Contents

Acknowledgements

Inclusion Australia would like to thank the families and allies we spoke to for their generosity with their time, knowledge, and experience. This includes our member organisations and the individual members of Inclusion Australia’s Service for One Community of Practice and VALID’s Behaviours of Concern Peer Action Group.

We acknowledge the Traditional Owners of the land on which we live and work throughout Australia. We recognise their continuing connections to land, waters and skies and pay our respects to Elders past and present.

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Introduction

Introduction ……………………………………………………………………………………………………………………………………. 2

Background …………………………………………………………………………………………………………………………………….. 3

Guiding principles for engaging with autistic people with an intellectual disability …………………………………… 4

Who does the National Autism Strategy consultation process need to reach? …………………………………………. 8

How can the Strategy consultation process reach autistic people with an intellectual disability? ………………. 9

What does the Strategy consultation process need to hear about? ………………………………………………………. 13

Factors for facilitation success …………………………………………………………………………………………………………. 17

Future directions—what comes next? ………………………………………………………………………………………………. 19

Conclusion …………………………………………………………………………………………………………………………………….. 23

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Introduction

Inclusion Australia has been engaged by the Department of Social Services (DSS) to undertake a research project to provide information on key issues facing autistic people with an intellectual disability, to feed into Phase 2 of development of the National Autism Strategy (NAS): the national consultation process. DSS has expressed particular interest in understanding the gaps that currently exist, and how they might best be ameliorated through the development of the national consultation process. In particular, DSS was interested in who has been left out; how best to engage with those who have been left out; and what are the most important things this group should be asked about in consultations.

Our understanding is there is concurrent work being undertaken in several areas and that this report will contribute to DSS’ overall planning:

DSS is working with other representative organisations to conduct similar research projects with other communities
DSS is undertaking a mapping exercise to pull together information from relevant public consultations and submissions
The Autism CRC is also looking at the evidence base for development of the Strategy, including identifying gaps in evidence.

In this paper, we discuss the intersection of autism and intellectual disability and how the National Autism Strategy can find and highlight the voices of autistic people with an intellectual disability. We spoke to several different advisory groups, sector leaders, and families of autistic people with an intellectual disability about what they most needed to give their input into the National Autism Strategy.

The remainder of this paper:

Sets out several proposed guiding principles to guide the Strategy consultation
Considers who the Strategy consultation work needs to reach and how to reach them
Identifies elements of successful facilitation with this community
Suggests several important topics for the consultation to consider
Provides ideas for future work.

Background

Being autistic and having an intellectual disability can constitute a type of multiple marginalisation, with people facing intersecting and compounded marginalisation and discrimination. While there are shared barriers, there are also many differences among this group. Each autistic person with an inтелlectual disability is unique, and numerous factors contribute to their individual characteristics, experiences, and ultimate outcomes.

Some of these factors include:

Support needs—lower or higher
Family and trusted, informal (unpaid) supports, as well as paid supports
Fair access to a differential diagnosis for both disabilities
Access to healthcare, including preventative healthcare and check-ups
Access to school and education, and being safe at school
Communication method and access to preferred ways of communication
Work opportunities (supported employment vs. open employment)
Access to services and systems, like the Disability Support Pension (DSP) or the National Disability Insurance Scheme (NDIS)
Experiences with justice systems, restricted settings, and people with power
Experiences in emergency and crisis situations, including with first responders and police
Community attitudes and influences.

There is a lack of data available in Australia about the prevalence of intellectual disability among autistic people, and investing in further research is a key opportunity for the National Autism Strategy and its associated work.

Internationally, there is a growing body of research that points to a significant prevalence within this c cohort. For example, one Italian study estimated that 40% of people with an intellectual disability also had autism, while 70% of people with autism also had an intellectual disability.¹ In a review that looked at studies undertaken among population groups in the UK and the US, researchers estimated that between 40% and 60% of autistic people also have an intellectual disability.²

¹ La Malfa, et al. 2004. Autism and intellectual disability: a study of prevalence on a sample of the Italian population. Journal of Intellectual Disability Research 48(3), 262-267. https://doi.org./10.111/j.1365- 2788.2003.00567.x ² Buescher et al. 2014. Costs of autism spectrum disorders in the United Kingdom and the United States. JAMA Pediatr. Aug;168(8):721-8. doi: 10.1001/jamapediatrics.2014.210. PMID: 24911948.

Guiding principles for engaging with autistic people with an intellectual disability

We have identified the following principles to guide the development of the Phase 2 Strategy consultation process:

Different people will need to give feedback in different ways
The intersection of autism and intellectual disability is a multifaceted experience with compounding impacts
Consultations must be approached in a person-centred, trauma-informed, and outcomes focused way
Safety concerns must be recognised and addressed.

These are expanded upon below.

Different people will need to give feedback in different ways

Autistic people with an intellectual disability are diverse and have different communication and support needs. This means that some people will be able to give feedback themselves using a traditional survey or traditional consultation with the right documents and support. However, some autistic people with an intellectual disability will not be able to do this. They may rely on parents, families, or other support people to give feedback on their behalf.

It is critical that all autistic people with an intellectual disability are included in the Strategy and that the consultation process offers a variety of options to support this. To recognise this, there are two important elements for the Department to consider in designing its consultation approach.

The consultation process must provide different options and ways for the community to provide input, including mechanisms that support a range of communication methods. Alternatively, when asking about the experiences a person is having in different environments (e.g., health systems or at home), observing them interacting with that environment can be a way to record their feedback.

Additionally, the consultation process must understand and accommodate the critical voice of families and independent advocates in supporting people with complex support needs and sharing their experiences. Families we have spoken to already are concerned that there might not be sufficient opportunity for them to engage and share the experiences of their autistic family members with an intellectual disability. There must be specific opportunities for this to occur or we risk insufficiently capturing the voices and experiences of people with more complex needs.

Finally, consideration should be given to a targeted in-reach approach to connect with autistic people with an intellectual disability who live in closed or restricted settings, including group homes and the justice system. This is further discussed throughout this paper.

The intersection of autism and intellectual disability is a multifaceted experience with compounding impacts

People with a dual diagnosis of autism and intellectual disability may experience the world in a very different way to people with autism or intellectual disability diagnoses alone. Having a dual

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diagnosis, where that duality is not recognised or appropriately supported, can have compounding disabling impacts. This often means autistic people with an intellectual disability have higher support needs than people with autism or intellectual disability alone.

When working with autistic people with an intellectual disability, these differences—and the implications of those differences—must be listened to and embraced as part of the person’s context.

Autistic people with an intellectual disability may have very different experiences based on the order in which they received their diagnoses, and the supports they have or have not been given for each disability. We have heard that a diagnosis for both disabilities for the same person can be difficult to get, as diagnosticians have been known to choose not to perform additional diagnoses due to “not wanting to add labels” or a sense that “one diagnosis is enough”. There is a growing body of evidence of this within the academic literature.³

We have also heard that support can vary widely depending on the “primary” diagnosis; for example, Supported Decision Making is usually considered part of support and information for people with an intellectual disability, whereas it can be less common for this to be mentioned or included in supports and resources for people with autism as the primary diagnosis.⁴ The range of supports a person has access to and is able to use will vary widely for this cohort, and can depend on family resources and access to informal supports, including access to informal safeguards.

Understanding the compound impacts and multifaced experiences of this community is an important foundation for the Department in developing a consultation process that can meet their eeds and ensure their voices are included.

Consultations must be approached in a person-centred, trauma-informed, and outcomes-focused way People with autism and an intellectual disability are likely to be living in restricted environments, like group homes or hospitals, and they are over-represented in interactions with the criminal justice system. For many, those experiences are likely to have been traumatic.

Additionally, we hear from many autistic people with an intellectual disability and their families that they often face barriers like discrimination, insufficient understanding of their needs, and exclusion through their engagement in other services, including disability services, health, and education. This has often happened in multiple ways over many years.

As a result, for many autistic people with an intellectual disability—and especially those within the c cohort mentioned above, there is a “deep sense of mistrust” of government systems, particularly the

³ Allison, C., Auyeung, B., & Baron-Cohen, S. (2012). Toward brief “Red Flags” for autism screening: the Short Autism Spectrum quotient and the Short Quantitative Checklist for autism in toddlers. Journal of the American Academy of Child and Adolescent Psychiatry, 51(2), 202-2012. https://doi.org/10.1016/j.jaac.2011.11.003; Metcalfe, D., McKenzie, K., McCarty, K., & Murray, G. (2020). Screening tools for autism spectrum disorder, used with people with an intellectual disability: A systematic review. Research in Autism Spectrum Disorders, 74, 101549–. https://doi.org/10.1016/j.rasd.2020.101549 ⁴ Russell, G., Mandy, W., Elliott, D., White, R., Pittwood, T., & Ford, T. (2019). Selection bias on intellectual ability in autism research: a cross-sectional review and meta-analysis. Molecular Autism, 10(1), 9–9. https://doi.org/10.1186/s13229-019-0260-x

NDIS.

Consultations to develop the Strategy must recognise these experiences and the trauma that many people have been through, and seek to engage in a safe, person-centred, and trauma- informed manner.⁵

Safety concerns must be recognised and addressed People may have concerns about giving their feedback or making complaints to service providers, and whether they will be resolved in an appropriate manner or whether their speaking up will povoke retaliation.

This is not an unfounded fear. Numerous reports and inquiries have found that there is a well- founded fear of retribution for people with disability when speaking up and voicing concerns about support workers and service providers and that this can prevent complaints and reports of poor practice—including of violence, abuse, and neglect—from being made.⁶,⁷,⁸

There is also considerable evidence of feedback and complaints being made by people with disability not being acted on or addressed. The NDIS Own Motion into Aspects of Supported Accommodation Final Report (the Own Motion report) shows that there is inadequate transparency and communication about how serious incidents and issues affecting a person are being managed, as well as why those incidents occurred in the first place. Additionally, the Own Motion report also presented evidence pointing to deficiencies in the capability and culture of the workforce—including the extent to which some support workers and management “reflect the values and principles of the providers, and have the interests and quality of life of the people they support at the centre of how they undertake their work”—which create conditions in which people with higher support needs are at greater risk of experiencing negative outcomes due to poor practice, including human rights breaches.⁹

This helps to explain why many people—especially those with high support needs and/or people in supported accommodation like group homes, as mentioned at the beginning of this paper—do not feel listened to or supported to provide feedback and may fear the reaction, inaction, or potential retaliation from a service provider.

⁵ See, for example, guidance by the Blue Knot Foundation: https://professionals.blueknot.org.au/ ⁶ Victorian Ombudsman. (2015). Reporting and investigation of allegations of abuse in the disability sector: Phase 1 – the effectiveness of statutory oversight, Melbourne, p. 18. ⁷ Australian Senate Community Affairs References Committee. (2015). Final Report: Inquiry into Violence, abuse and neglect against people with disability in institutional and residential settings, including the gender and age related dimensions, and the particular situation of Aboriginal and Torres Strait Islander people with disability, and culturally and linguistically diverse people with disability. Retrieved from: https://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/Violence_abuse_n eglect/Report. ⁸ Gray, A., Forell, S., & Clarke, S. (2009). Cognitive impairment, legal need and access to justice. Justice Issues Paper 10. Law and Justice Foundation of New South Wales. Retrieved from: http://www.lawfoundation.net.au/report/justiceissues10. ⁹ NDIS Quality and Safeguards Commission. (2023). Inquiry Report: Own Motion Inquiry into Aspects of Supported Accommodation. Page 52. Retrieved from: https://www.ndiscommission.gov.au/resources/reports- policies-and-frameworks/inquiries-and-reviews/own-motion-inquiry-aspects

Ensuring Service Provider and System Non-Involvement in Consultations

To address this, ensure that service providers and systems are not involved directly in consultations and liaise directly with people giving feedback. Allow for anonymous feedback if possible. Use supported decision-making principles in the delivery of the consultations.

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Who does the National Autism Strategy consultation process need to reach?

As with all other groups, autistic people with an intellectual disability are the experts in their own experiences. Autistic people with an intellectual disability often have families, support people, organisations and support professionals involved in their lives. This means there are a range of different perspectives that may be sought, including:

Autistic people with an intellectual disability
Parents and families, including partners or spouses and/or other trusted supports
Friends and housemates
Support professionals, including support workers or therapists (of the person’s choice)
Individual advocates and advocacy organisations
Specialists who specifically work with autistic people with an intellectual disability and can discuss clinical factors and outcomes (e.g., speech pathologists who work with people who are nonspeaking).

Because autistic people with an intellectual disability are likely to have many different people in their lives in support roles, both formal and informal, it is important to be clear on who should and should not be a source of information, and to collect information using informed consent and supported decision-making approaches.

Service providers, particularly those who provide NDIS supports like Supported Independent Living, should not be the first port of call for providing information with or about autistic people with an intellectual disability about their lived experiences. While disability support providers can play a valuable role in connecting the people it needs to hear from to the National Autism Strategy consultation process, autistic people with an intellectual disability, alongside their families and informal supporters, should always be the first source of knowledge and guidance on who else to ask.

Some autistic people with an intellectual disability or families may want to include a trusted specialist practitioner (e.g., a speech pathologist, allied health practitioner or therapist) or a support worker to give input. This should be respected if it is what the person wants, there is good evidence of consent, and the professional has capacity to do so.

Individual advocates and advocacy organisations may have general knowledge and experience to share about the experiences of autistic people with an intellectual disability. This does not replace the need for individual consultations but can help paint a clearer picture of a range of experiences and the need for change.

How can the Strategy consultation process reach autistic people with an intellectual disability?

We recommend a multi-tier approach to ensure everyone has the opportunity to contribute to the development of the National Autism Strategy and is fairly represented in the Strategy output.

We propose the following way of working:

Tier 1: Data gathering from a wide range of people

Online surveys
Webinars and information sessions
Information and resources on how to contribute to the Strategy development
Allowing people to make submissions in whatever way works for them (text, audio, video, image, art)
Promotion via Disability Representative Organisations, advocacy organisations, and service providers.

Tier 2: Consultations that work for most people (online or in person consultations)

Group consultations via Zoom or online
Group consultations in person.

Tier 3: Individualised consultations for people whose voices might not be otherwise heard

Seeking expressions of interest for individualised consultations
Meeting directly with autistic people with an intellectual disability, and/or their families or support people, in the place of their choice
In-reach options, for example, visiting or connecting with autistic people with an intellectual disability living in restricted environments, like group homes, hospitals, or prisons
Finding and engaging relevant communities of practice, self-advocacy groups, and other lived experience groups or committees.

We are aware this model of consultation has considerable resource requirements and we do not expect every person who wants an individualised consult to necessarily be able to access one. However, we suggest that allocating a portion of the consultation budget to finding and consulting with people who may not otherwise be heard will result in a better informed and more inclusive Strategy.

Priority cohorts

Within the autistic and intellectual disability community, there is great diversity. It is important to remember that an individual autistic person with an intellectual disability is not going to necessarily represent their whole community. We have identified cohorts who we believe are least likely to be heard and represented through traditional consultation methods and offer solutions to capture and engage with these people.

People with high support needs or complex disability

Many people who have high support needs or complex disability, as well as their parents, families, and other support people, often miss out on representation in consultations and subsequent outputs.

Suggested approach

Allow interested people to submit expressions of interest for an individualised consultation. Ask them what they need to give feedback. Individualised consultations should have the option of visiting a person in their home to gather feedback if this is what would work best.

People who have contact with restricted settings like hospitals, the justice system, and

aged care

People who have experience with restricted settings and the justice system may be more difficult to access than other autistic people with an intellectual disability, but it is critical that their system experiences are captured. This includes system touchpoints such as early interactions with police or the justice system, short term hospital stays or medical experiences, and respite or short-term accommodation services.

Suggested approach

Connect directly with autistic people with an intellectual disability who live in closed settings via avocacy and legal organisations. Many advocacy organisations funded under the National Disability Advocacy Program¹⁰ work directly with people in group homes and in the justice system. The national peak body for disability advocacy services, Disability Advocacy Network Australia (DANA), is a useful place to start. Clearly brief organisations on the scope of consultation so they can find the right people to talk to.

Several advocacy organisations that are members of Inclusion Australia have specific expertise and programs working with people with an intellectual disability in the justice system, and we could facilitate connections directly. Our members also have substantial experience working with people living in group homes.

Advocacy organisations and legal services, like community legal centres, will also be able to provide input about the trends and experiences they have observed, highlighting the issues within these systems and how autistic people with an intellectual disability can be better supported.

State and territory public advocates and public guardians may also be able to provide input or share information about consultation opportunities with their clients.

¹⁰ https://www.dss.gov.au/our-responsibilities/disability-and-carers/program-services/for-people-with-disability/national-disability-advocacy-program-ndap

People living in group homes who may not have access to informal supports

Autistic people with an intellectual disability who live in group homes may not have access to support people or informal supports in the same way as others, particularly if they are older.

Suggested approach

As above re: connecting with advocacy organisations and public advocates / guardians. It would also be valuable to engage with service providers and connect with people using their services.

This could be done through National Disability Services (NDS), the provider peak body, or by directly contacting providers. Providers may have an internal Board, advocacy group, group home resident committee, or advisory committee made up of people they support or their family members or other trusted informal supports. If they do, present at an upcoming meeting about the Strategy and offer opportunities to get involved. For all the above priority cohorts, it is important to be aware that they may have factors affecting their participation in consultations and giving feedback, including health issues, sensory issues and overwhelm, or caring requirements. These can also result in last minute cancellations or reschedules. If rescheduling becomes necessary—even if it is last minute— do not presume the person has nothing to add. Try to work with them to find a way to make sure their voice can be heard.

How to get good information from autistic people with an intellectual disability, their families, and their support people

It is important to remember that a range of approaches will be needed for an effective and representative consultation process. Some people will be able to engage with the Strategy consultations themselves independently, while some may need support, and others may have families or support people give input on their behalf. All these groups have valuable feedback to give and should be engaged separately to ensure everyone can freely share.

Generally, we heard that the family members or other trusted informal supports of autistic people with an intellectual disability are anxious about their feedback being lost to the Strategy due to feedback and consultation options not being accessible or inclusive. For example, because of rigid consultation times and availability, short consultation windows for submissions, and expectations of physical attendance to give feedback—or for some, expectation of digital attendance as well.

There is also a concern that the voices of autistic people with an intellectual disability and/or complex needs will not be adequately captured if families or other trusted informal supports are not included in consultations.

We highly recommend that the Strategy deliberately prioritises hearing from the broadest range of people and experiences possible and has options available that allow people whose voices are not usually heard to engage.

Inclusion Australia and our members have a wide range of materials available to guide the delivery of inclusive consultations.¹¹ Some highlights are included below:

Easy Read document options must be included in consultation materials. If Easy Read is prepared to support a consultation, it should be developed and given to participants well ahead of the meeting time—preferably at least a week in advance, if not longer.
All online documents and forms must be offered in accessible ways, e.g., screen reader compatible and provided as Word docs rather than PDFs.
Surveys should have clear options to indicate who is completing the survey—the autistic person with an intellectual disability, their family, or other trusted informal or formal support. Some people we spoke to found that completing surveys as a support person did not allow them to accurately describe their family members’ diagnoses, making it difficult to capture prevalence of autism and intellectual disability.
Families need to be included and expected as important sources of feedback. Consider different surveys and consultations for autistic people with an intellectual disability and for families, where each is the primary voice.
Support workers have an important role to play in giving feedback with their client’s consent to do so. However, attending a consultation is unpaid work, and many support workers may not be able to afford to do this for their clients without financial support. If support workers are identified as an important group to speak to, we recommend exploring potential remuneration options for these groups when speaking about priority cohorts.

¹¹ See our Towards Inclusive Practice resources: https://www.inclusionaustralia.org.au/towards-inclusive-practice/.

What does the Strategy consultation process need to hear about?

Important topics to talk about

Autistic people with an intellectual disability have different and specific experiences unique to their community. To this end, we offer two lists of potential consultation questions: one of specific common themes identified in our consultation, which may be more commonly experienced by autistic people with an intellectual disability, and some overview questions, which allow consultation participants to self-identify the issues they most need heard and to affirm their place in the Strategy.

Please note that all questions have been aimed at autistic people with an intellectual disability by default. They will need to be translated into Easy Read and other accessible formats. They can be amended for parents, families, and other specific cohorts.

Specific themes and life experiences

These questions are intended to explore common themes experienced by autistic people with an intellectual disability to build an effective dataset. We have also included a ‘key outcome’ for each topic theme to help guide both conversation and the Strategy’s overall goals for this cohort.

Communication

What form of communication do you primarily use?
Have you been well supported to find an effective way of communicating?
If you did not have access to communication support when young, were you supported to access communication support when you were older?

Key outcome: Autistic people with an intellectual disability arrive at 18/school leaver age with a reliable, functional way of communicating that is not reliant on family or other informal or formal supports.

Risks and safety

Does anyone challenge or question your decisions due to risk concerns?
Are there things that happen to you at home that make you feel unsafe?
Are there things that happen to you in the community that make you feel unsafe?

Key outcome: Autistic people with an intellectual disability have personal autonomy and their human rights are respected and upheld.

Choice and control

When planning or decisions are being made about you and your life, are you included in that process?
Do you need any support to make your own decisions?
Are you getting the support you need to make decisions?
What choices have been made for you by other people that you don’t agree with?

Key outcome: Autistic people with an intellectual disability make their own decisions and have access to any support they need to do so.

Housing

Are you happy to live in a house with other people?
How many people would you like to live with (zero is an answer)? Why did you give us that answer?
What sort of home would you feel safe in?
If you could change anything about your housing situation, what would you change?

Key outcome: Autistic people with an intellectual disability have a living situation of their choice and feel safe at home.

Education

Did you feel safe at school? If the answer is no, why not?
Did you feel understood at school?
Do you feel like you learnt a lot at school? e.g., reading and writing
Did you get to do the things you wanted to do at school?
Were you included in activities at school?

Key outcome: Autistic people with an intellectual disability should be included in all aspects of school life and should expect to achieve similar learning trajectories and outcomes as other students.

Transition from school and employment

Did you get to choose what you did after finishing school?
Did you have a choice to work in a non-disability setting?
Do you have a choice in the work that you do?
Were you offered further study after you finished school?

Key outcomes: Autistic people with an intellectual disability can pursue their chosen pathways after leaving school.

Diagnosis and dual diagnosis

Was it easy to get a diagnosis for autism and intellectual disability?
Once you had a diagnosis, was it easy to get support?
Did your supports focus on just one of your disabilities?

Key outcome: Autistic people with an intellectual disability have adequate access to a differential diagnosis and are subsequently supported through a dual diagnosis lens.

Mental health

There is an increasing body of evidence that demonstrates that people with an intellectual disability—and it follows, autistic people with an intellectual disability—experience disproportionate violence, abuse, and restrictive practice from a young age. As a result, this means autistic people with an intellectual disability are at very high risk of trauma and psychosocial disability. 12

¹²Clark, L.L., Hext, G. and Xyrichis, A. (2018), “Beyond restraint: raising awareness of restrictive practices in acute care settings”, International Journal of Nursing Studies, Vol. 86, doi:10.1016/j.ijnurstu.2018.06.006.; Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. (2021). Nature and extent of violence, abuse, neglect and exploitation against people with disability in Australia. Centre of

FOR 21-29:756

• Have you been offered support for your mental health? • Have you ever felt very sad for a lot of the time? • Do you feel anxious or worried a lot of the time? • Has anyone every explained to you what mental illness is and who to talk to about it? • Has something scary happened to you that you remember and think about a lot? If yes, have you talked about it with someone?

Key outcome: Autistic people with intellectual disability have adequate access to education and support regarding their own mental health separate from their disability diagnosis.

System interactions

• How can the Strategy support the community to understand the needs of autistic people with an intellectual disability? e.g., not judging people negatively due to their behaviour. • Have you had a dysregulated behaviour misinterpreted as intentional that led to you having a negative interaction with someone?

• Do people make assumptions about you or feel threatened because of your dysregulated behaviours?

• Has anyone used power over you because of your behaviours, like being assaulted or arrested?

• If you have had negative experiences, what do you wish the other people had done differently? • Has your experience with your family member or other trusted informal supports in accessing out of home care services been challenging? o If yes, what were those challenges? How could changes be made? o If not, what about the experience worked well?

Key outcome: Autistic people with an intellectual disability can access the community safely and are supported by systems and people in power who don’t make assumptions about behavioural intent.

Transition from home

People who have transitioned from home

• Did your family member have choice and control over whether they moved out of home, where they moved to and when it happened? • What would help families and people they support transition smoothly from living at home to living independently in a supported environment? • Did your family feel supported in this transition from home to living independently? • What support did you have? How did it help? And what was the outcome? • What support would you have wanted or needed?

Research Excellent in Disability and Health. Retrieved from: https://disability.royalcommission.gov.au/system/files/2021-11/Research%20Report%20- %20Nature%20and%20extent%20of%20violence%2C%20abuse%2C%20neglect%20and%20exploitation%20ag ainst%20people%20with%20disability%20in%20Australia.pdf

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People who have not transitioned from home

Do you feel the current systems could support your family member to transition to living independently with support? If yes, what supports make you feel confident about this change? If no, what needs to change or what is missing?
Is there anything that is stopping your family member from transitioning to living independently with support?
Do you have any concerns about your family member transitioning from home into supported accommodation?

Key outcomes: Autistic people with intellectual disability to be supported in the process of transitioning from home to a supported living environment of their choice. Families of these individuals can easily access information and support to ensure a smooth transition that is not crisis driven.

Overview questions

These questions are intended to explore and highlight any intersecting experiences or issues that may not be captured by focussed consultation questions. Further, they also encourage engagement and collaboration with the Strategy as a whole. Referral and other support options would need to be provided.

What is working well in your life right now? You can talk about anything you need to.
What is not working in your life right now? You can talk about anything you need to.
What are the issues that are critical and need to be responded to quickly?
Are there any risks in your life that might become issues in the future?
How can we, through the National Autism Strategy, better support autistic people with an intellectual disability?
How can we involve you in an ongoing way in the co-design projects, outputs, and formulation of the Strategy?

…and one last top tip

Consultation questions are typically specific. They tend to ask direct questions with distinct measurable outcomes. However, for this cohort, many people may not have had an opportunity to have their voice heard before, and they may come with a wealth of experience to share on many topics. Be prepared to hear about any aspect of life that a person might need to talk about. This could include difficult topics such as health problems (e.g., constipation) or serious systemic failures (e.g., abuse and neglect). It could also include difficult emotions such as pain, grief, and anger. This is a valuable opportunity to learn about things that may feel outside the scope of consultation and to truly understand what the most important issues are for autistic people with an intellectual disability. This type of consultation requires a trauma informed approach and good support available. Provide support proactively and do not expect participants to have or provide their own.

Factors for facilitation success

A critical element of a successful community consultation is how the consultation is delivered. There are a range of factors that are involved in this and contribute to getting good feedback and data, including:

Building a safe and collaborative dynamic where people feel comfortable to give feedback
Asking relevant questions and exploring responses
Ensuring alternative accessible consultation methods
Providing support or referral if needed and leaving people feeling safe afterwards.

We have highlighted some key skills that are important to think about when consulting with autistic people with an intellectual disability. More information about engaging with people with an intellectual disability inclusively is available in our Towards Inclusive Practice resources.¹³

Skilled facilitation and co-facilitation

Skilled facilitation is critical to successful consultation, particularly when working with autistic people with an intellectual disability and their families. A good facilitator:

In the first instance, seeks advice on what setting would work best for the person to ensure a meaningful engagement and a willingness to be flexible. For example, going for a walk with them
Shares who they are, what they do, and what they will do with the information they collect
Takes the time to get to know the people giving information and makes them feel comfortable
Thinks about the people in the room and finds ways to address power dynamics so people feel safe to talk honestly
Asks good questions and engages with the answers people give
Makes sure everyone in the room is included and has a chance to have their say
Leave people feeling OK with what they have discussed
Follows up if people experience distress and knows what supports to offer.

While research on best practice for facilitators undertaking consultation work with autistic people with an intellectual disability is still emerging, the usual principles of good facilitation also apply. Facilitators should have specific skills and ideally should have completed facilitation training to enable them to gather data effectively.¹⁴ That is, in a way that is based in human-rights and inclusive practices that enables positive dynamics and trust to be built, as well as a consistent approach across all consultations.

¹³ Available on the Inclusion Australia website: https://www.inclusionaustralia.org.au/towards-inclusive-practice/ ¹⁴ Tesfaye, R., et al. (2019). Assuming ability of youth with autism: Synthesis of methods capturing the first-person perspectives of children and youth with disabilities. Autism, 23(8), 1882–1896. https://doi.org/10.1177/1362361319831487

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These can be autistic people with an intellectual disability, families, or other trusted informal supports.

Tools of the trade: documents, prompts, and consistency

For this cohort, it is important to consider the use of prompts as part of the facilitation toolkit. Not everyone will immediately know how to answer a specific question, especially if they are open ended (e.g., “What’s working for you in your life?”). Understanding how to guide the conversation if people need help ensures everyone has the best chance to give their answer. You could also provide an example answer so people have an idea of what to say, while being mindful of acquiescence.¹⁵ Allowing as much time as is required by the individual to process the questions and formulating a response will need to be factored in to time allocation for the engagement.

As with working with people with an intellectual disability who do not have autism, accessible documents are important. Have information for autistic people with an intellectual disability, as well as information for families, carers, and support workers, translated into Easy Read. Ask for any other access needs in regard to the document (e.g., languages other than English), and ensure all online documents and forms are accessible (e.g., for screen readers, fillable form fields, provided as Word documents rather than PDFs).

Consistency of data gathering is also important, particularly if there are teams on the ground in different areas or different organisations contracted to do the same work. Make sure training, language and materials are standardised, while allowing for flexibility of engagement for those who need it.

¹⁵ https://www.inclusionaustralia.org.au/resource/communication-its-not-a-spectator-sport/

Future directions—what comes next?

To write this paper, we spoke to many families and allies of people with an intellectual disability about who to consult with, what should be discussed, and how to make National Autism Strategy consultations accessible and effective. This process allowed us to capture the experiences of autistic people with an intellectual disability who have very complex needs and who are not generally heard through government consultation processes. Our project team also included people with direct and family lived experience.

Together, the people we consulted with provided valuable insight and had specific suggestions for what they thought would be the best actions to take as part of the Strategy process itself. We acknowledge that there will be space for these inputs later in the Strategy consultation timeline, but we feel it is important to capture and document these insights alongside the requested consultation data.

We suggest the following areas for consideration.

Specific investment in a dataset on the prevalence of autism and intellectual disability together

We have highlighted above the critical lack of data on the co-occurrence of autism and intellectual disability. Knowledge gaps affect all aspects of life for autistic people with an intellectual disability: everything from diagnosis to education to life outcomes.

We suggest that, as an action item, the Strategy aims to create a comprehensive data set on co-occurring autism and intellectual disability. This would include prioritisation of this data collection by the National Disability Insurance Agency, with the rollout of the new NDIS PACE ICT system and should align with the work being done on the National Disability Data Asset. There is significant data on life outcomes for people who are autistic or have an intellectual disability – enough to know this is an area that requires critical attention. But there is currently no baseline to effectively assess prevalence of both conditions together, life trajectories and life outcomes.

People with lived experience, as well as their family members and other trusted informal supports, should be actively involved in co-designing such a dataset at every step of the way. It is recommended that autistic people with an intellectual disability, their family members, or other trusted informal supports are deeply embedded in the project as co-designers, co-researchers, and testers in valued and engaging roles.

Representation of autistic people with intellectual disability – including those with complex communication and/or support needs

Families of people with complex needs have told us that so far it feels like the National Autism Strategy work is focused on, and led by, autistic people who do not have intellectual disability or complex communication or support needs. Many of the families we spoke to said they do not feel their experiences are being represented within the Strategy or the Oversight Council. This includes experiences more commonly experienced by autistic people with an intellectual disability such as interactions with the justice system, complex support needs and plans, non-speaking communication supports and styles, and abuse and neglect by service providers.

We acknowledge that there are more committee announcements to come, and this may change; however, if it does not, we recommend making an intentional effort to re-capture and represent this group in the development of the Strategy.

We suggest the following approaches:

Put specific engagement structures in place within Phase 2 of the development of the Strategy, to connect with this cohort. This means including consultations and measures that acknowledge the specific experiences and needs of this group, including specific data collection questions and measures that reflect these experiences.
Consider autistic people with an intellectual disability and parents as paid consultants to fill Oversight Council and Working Group experience and/or representation gaps.
Consider including subgroups within the existing National Autism Strategy working groups to reflect specific issues faced by autistic people with an intellectual disability. These could include a subgroup on behaviour supports or restrictive practices, justice system interactions, and service provider complaints and escalation. It is our belief that these issues should be specifically included in the Strategy and not segregated into a separate working group. These issues should be treated as relevant to all autistic people, not just those who also have intellectual disability.

Targeted, specialised training for support workers There is an opportunity for the Strategy to drive workforce capability to better meet the needs of autistic people with an intellectual disability.

We suggest the development of a pack of training resources specifically for working with autistic people with an intellectual disability (though these topics would have relevance to most autistic people, particularly those with complex support needs). This pack should be developed and held at the national level within the Strategy body of work so as not to be influenced by service providers or state registration/licensing requirements. We are not presently aware of these topics being covered by another organisation and feel there is a strong need for additional specialised training.

Family and Informal Supports

family member or other trusted informal supports on their own (e.g., a service for one¹⁷). While these options may be acknowledged by the NDIS and other relevant bodies, there is little guidance available for those exploring ways to manage complex supports. Data on these individualised support systems, the success of these outcomes and guidance for other families in similar situations would be valuable assets.

We recommend that the Strategy prioritises effective data gathering about the intersection of autism and intellectual disability in Australia. This includes rates of dual diagnosis, barriers to dual diagnosis and rate of misdiagnosis or misidentification, access to supports after dual diagnosis, and life outcomes for people with dual diagnosis.

¹⁷ https://www.inclusionaustralia.org.au/services-for-one-project/

Conclusion

We are very pleased to see DSS is interested in specifically exploring the experiences of autistic people with an intellectual disability in developing the National Autism Strategy. This cohort is not usually well represented in public consultations and community input processes, and data on their specific experiences is lacking as a result.

To consult with autistic people with an intellectual disability effectively, there should be options to allow people who experience more marginalisation to be represented. This includes people with higher support needs, and/or who are non-speaking or have complex communication needs. They may need individualised, flexible approaches, including offline and one-on-one consultations.

We believe that using an inclusive, trauma informed, and outcomes-focused approach will be an important part of the development process for the Strategy. We know that one of the best predictors of good outcomes is having good data, and with the right approach, this work could take a significant step in addressing noted data gaps. We hope that the Strategy’s engagements capture all the voices that need to be heard, resulting in an inclusive Strategy for all autistic people – including those who also have an intellectual disability.

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FPDN Community Consultation

June 2023

Key Issues facing First Nations Autistic People

For the Department of Social Services and the National Autism Strategy

Acknowledgements

FPDN gratefully acknowledges the funding and support from the Department of Social Services to undertake consultation with community to gain insight into autism from a First Nations perspective.

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Acknowledgements ………………………………………………………………………………………. 2 Executive summary ………………………………………………………………………………………. 4 About FPDN ………………………………………………………………………………………………… 6

Introduction …………………………………………………………………………………………… 7
Method …………………………………………………………………………………………………. 7 2.1 Scoping review ……………………………………………………………………………………………….. 8 2.2 Interviews …………………………………………………………………………………………………….. 10 2.3 The survey …………………………………………………………………………………………………… 10
Scoping review …………………………………………………………………………………….. 13 3.1 Disadvantage ……………………………………………………………………………………………….. 14 3.2 Misdiagnosis and delayed diagnosis………………………………………………………………… 14 3.3 Access to services…………………………………………………………………………………………. 15 3.4 Stigma and shame ………………………………………………………………………………………… 16 3.5 Education ……………………………………………………………………………………………………. 17 3.6 Care giving …………………………………………………………………………………………………… 17 3.7 Cultural model of inclusion ……………………………………………………………………………… 17
Findings …………………………………………………………………………………………………. 18 4.1 Interview findings ………………………………………………………………………………………….. 18 4.2 Survey findings …………………………………………………………………………………………….. 30
Discussion of the findings ……………………………………………………………………… 49 5.1 Health and diagnosis …………………………………………………………………………………….. 49 5.2 Justice …………………………………………………………………………………………………………. 52 5.3 Education …………………………………………………………………………………………………….. 52 5.4 Employment …………………………………………………………………………………………………. 53 5.5 Culture and community ………………………………………………………………………………….. 53
Recommendations ……………………………………………………………………………….. 54 Appendix A ………………………………………………………………………………………………… 56 Appendix B ………………………………………………………………………………………………… 58
```
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Executive summary

This report was written by First Peoples Disability Network (FPDN) as part of a consultation process with the Department of Social Services (DSS) to gain insight into key issues for First Nations autistic people. The consultation process involved four qualitative interviews and an online, anonymous survey disseminated through FPDN’s social media channels.

The consultation process covered topics such as education, employment, healthcare and the justice system. The findings are discussed within this report.

The recommendations from the participants in the consultation process are from both the interviews and the survey.

The recommendations for government and decision-makers are as follows:

Embed culture

First Nations culture, grounded in the cultural model of disability and First Nations understandings of neurodivergence, is to be embedded in each aspect of life for First Nations autistic people. This includes but is not limited to the areas of health, education, employment, the justice system, and housing. Having cultural safety and First Nations disability-informed liaisons creates a sense of belonging and safety for First Nations people.

Education

Further education needs to be provided for all service providers around autism. The autism spectrum is broad and fluid, meaning that support needs for an individual on a particular day may change on subsequent days depending on stressors, the environment, and general health. For example,

Additional supports

Autism and the accompanying supports need to be viewed through a strengths-based lens – not seen as a deficit. Supports are to be flexible and tailored based on individual, family and community need, such as having flexible accommodations at work, support workers within the justice system, a diversionary pathway away from the justice system, and bespoke learning plans within the education system. Additionally, having autism assessments fully subsidised by Medicare enables equity in access to assessments and diagnosis.

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About FPDN

The First Peoples Disability Network Australia (FPDN) is a national organisation of and for Australia’s First Peoples with disability, their families, and communities.

Consistent with our principle of community control, our organisation is governed by First Peoples with lived experience of disability. We are the custodians of the narratives of First Peoples with disability, their families, and communities, and we recognise this important responsibility.

First Peoples with disability and their families are amongst the most seriously disadvantaged and disempowered members of the Australian community. FPDN gives voice to their needs and concerns and shares their narratives of lived experience.

Our purpose is to promote recognition, respect, protection, and fulfilment of human rights, secure social justice, and empower First Peoples with disability to participate in Australian society on an equal basis with others. To do this, we proactively engage with communities around the country, seek to influence public policy and advocate for the interests of First Peoples with disability in Australia and internationally.

We follow the human rights framework established by the United Nations Convention on the Rights of Persons with Disabilities (CRPD), to which Australia is a signatory, and the United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP).

We work within both the social and cultural models of disability. The social model sees ‘disability’ to be the result of barriers to our equal participation in the social and physical environment. These barriers can and must be dismantled. A First Peoples cultural model of disability is based on enhancing wellbeing by fostering social inclusion, through the active participation of people with disability in community and cultural activities. A First Peoples cultural model is the only model that seeks to improve the human condition through positive affirmation, as distinct to

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1. Introduction

This report was created as part of a consultation process at First Peoples Disability Network, funded by the Department of Social Services to help inform the consultation process for the National Autism Strategy.

Within this report, the term autism is used rather than Autism Spectrum Disorder (ASD). The term autism or autistic is often preferred by the autistic community as it does not focus on deficit – or a disorder – but leans into the idea of autism as a constellation of strengths and areas needing support. In addition, this report uses both person-first language such as “person with autism” and identity-first language, “autistic person.” A growing number of people in the autistic community view autism as part of their identity and frame their language to reflect this.¹

The prevalence of autism in Australia was estimated at 1 in 150 people in 2017² and more recent estimates rate the prevalence at 1 in 70 people. ³ The rise in numbers can be contributed to a growing awareness of the breadth of indicators of autism in diverse populations. Despite a growing awareness of what autism is, there are still misconceptions about autism and discrimination toward autistic people.

2. Method

First Peoples Disability Network engaged in consultation with First Nations autistic individuals and carers. The Department of Social Services (DSS) funded this work and the consultation focused on investigating the key issues facing First Nations autistic people.

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This process was co-designed by First Nations and autistic individuals and involved:

a scoping review of the literature;
qualitative interviews; and
an online survey.

The consultation process culminated in this report.

2.1 Scoping review

The scoping review was conducted to understand the breadth of previous research around the experiences of First Nations autistic people.

The inclusion criteria for the scoping review focused on academic literature around First Nations people and lived experience of autism, whilst the exclusion criteria excluded research on Indigenous populations outside of Australia.

Initially, the search dates were for the last 10 years (2013-2023) however due to the limited published research in this area the cut-off dates were extended to include 2010-2023.

Keywords for the search were:

“First Nations”
“Autism”
“Aboriginal”
“Autistic”
“Aboriginal and Torres Strait Islander”
“Autism spectrum disorder”

The databases searched were:

ProQuest Central
Informit
PubMed
UOW library database

The search in four databases (see Figure 1) was refined through key word searches to create a manageable number of papers. After reading 200 abstracts, in keeping with the inclusion and exclusion criteria, 13 papers were retained (see Appendix A for included literature). The findings of the scoping review will be discussed in section three.

Figure 1: Scoping review method

Database search	Database search	Database search
ProQuest Central n=2,253 articles	Informit n=1 article	PubMed n=3 articles

| Database search UOW Library n=96 articles | Each abstract was read and checked against inclusion/exclusion criteria | 13 articles were retained for the scoping review |

| Each article was read and iteratively coded for themes |

2.2 Interviews

Qualitative interviews were conducted with four individual participants. Two participants were carers or parents of autistic people, and two participants were autistic people (see Table 1). The participants were a convenience sample, not a representative sample. Recruitment occurred through word of mouth and direct invitation from the consultation team at FPDN.

Table 1: Interview participants

Pseudonym	Role	Geographical location
Samara	Parent	Regional NSW
Aunty	Carer	Regional NSW
Irene	Autistic person	Rural Tasmania
Freya	Autistic person	Urban QLD

Each participant provided verbal or written informed consent for the interview process and the interviews were qualitative in nature: open-ended and semi- structured. The interviews were approximately 45 minutes in length in an online videoconferencing format or face-to-face. The interviews were recorded and then transcribed. Following transcription, the transcripts were iteratively coded and the analysis was checked by the FPDN policy team.

2.3 The survey

The survey was designed as a qualitative survey so that rich data could be gathered beyond basic statistics. Similarly, the qualitative design was chosen based on the short timeframe of the project as gathering sufficient quantitative data would take lenger than the time available.

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The survey questions focused on the following areas:

Demographics of respondents
Experiences of autism
Challenges and enablers for First Nations autistic people
Community and culture

These questions were a combination of multiple choice and text box responses and were preceded by a section that required informed consent (see Appendix B). The survey opened on Thursday 27th of April 2023 and closed on Monday 15th of May 2023. The survey was distributed through social media at FPDN. There were 42 responses to the survey. The age range of the respondents are

shown in Table 2.

Table 2: Age range of survey respondents

Q2 What is your age range?

[Image of a bar chart showing age ranges from Under 18 to 75+]

Geographical Locations

The geographical locations are shown in Table 3 where 79% of respondents were from urban areas (n=31), 10% from regional areas (n=4), 7% from rural areas (n=3) and 2% (n=1) from remote areas.

Table 3: Geographical area

[Image of a bar chart showing the distribution of respondents across urban, regional, rural, and remote areas]

The survey forced responses for question 4 “Are you a First Nations person?” and question 5 “Are you autistic?” where “no” responses exited the respondent from the survey and retained the respondents who were both First Nations people and autistic. The results of the survey were collated through the survey program, SurveyMonkey, and themes were iteratively analysed by a policy officer at FPDN. The findings of the survey were then relayed back through social media for those who had participated in the survey.

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The limitations of the survey were its small sample size where respondents were accessed through social media channels which required digital literacy and access to internet. Individuals in remote or rural communities may not have found the survey accessible.

Other accessibility issues included the short time frame for the survey, no option for carers to respond on behalf of the person they care for, and no Easy Read version of the survey.

For future surveys, an option would be to allow carers to respond on behalf of the people with autism that they care for. However, if this occurs, clear parameters need to provided so that the voice of the autistic people are heard, as unfiltered as possible, even when others speak for them.

3. Scoping review

The purpose of the scoping review of the literature was to obtain a broad overview of recent research around First Nations autistic people. The findings from this review can provide a foundation to identify gaps in current research and to build on existing research. Specific details of how the scoping review was conducted is found in the method section (2.1).

Of the 13 documents that were reviewed, 8 specifically commented on the lack of research around First Nations autistic people.⁴ Bennett and Hodgson⁵ contributed the lack of data to cultural bias from the medical community where First Nations communities have lower rates of autism diagnosis, and secondly First Nations communities may be wary of disclosing autism to authorities. The latter is a significant concern in communities that have been characterised by Stolen Generations, and ongoing removal of children from families.⁶ Lilley et al., (2020)

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alluded to the complexity of attitudes toward autism in First Nations communities which aligns with the lack of language around disability in Aboriginal communities.

Dr Avery, from the Warrimay Nation, reiterates this saying, “There’s not this overarching concept of disability…The cultural model of inclusion has said mate, just come and sit with us. It’s just a philosophy of difference.”⁷ This philosophy, the cultural model of inclusion, accepts disability as an aspect of the person, without it being pathologised.

The following sections outlines each of the themes from the scoping review of the literature. The sections are: disadvantage; misdiagnosis and delayed diagnosis; access to services; stigma and shame; education; care giving; and the cultural model of inclusion.

3.1 Disadvantage

Four of the papers outlined the disadvantage facing First Nations individuals and communities. Luke et al.⁸ referenced “early life factors” that may increase vulnerability to neurodevelopmental issues and long-term health disadvantage.

Health inequities include lower life expectancy for First Nations people and co- existing conditions⁹ and higher rates of disability compared to the non-Indigenous population.¹⁰ Intergenerational trauma was another factor due to ongoing loss of culture, displacement from country, and racism from the wider Australian community.¹¹

3.2 Misdiagnosis and delayed diagnosis

The reviewed literature observed the likelihood of misdiagnosis and delayed diagnosis of autism in First Nations individuals. Two main factors were given for this. One, was cultural factors such as where avoiding eye contact is a cultural norm.¹² It was noted that a lack of culturally appropriate diagnostic tools may contribute to misdiagnosis and delayed diagnosis of autism.¹³ Similarly, a 2010 study¹⁴ highlighted

had been diagnosed with schizophrenia but after a later assessment, 13 of these individuals were diagnosed autistic. The overlap of traits from schizophrenia co- existing with intellectual disability can mimic autistic traits, especially around social interactions and fixed or repetitive interests. Likewise, there may not be an awareness in the community about autism15 and a mistrust of medical labels.16

The second factor for misdiagnosis and delayed diagnosis were the barriers such as geographical location and socioeconomic practicalities.17 When living in regional, rural or remote areas, access to services can be limited.18 Wait times for services delay access to therapies and other necessary services. Socioeconomic barriers can also lead to delays in assessment and diagnosis as the process of assessment is expensive and often requires multiple referrals from health professionals. Similarly, it was found within low socioeconomic communities that disability and poor health was normalised.19

3.3 Access to services

Accessing services can be a challenge to people outside of urban locations, and for those from low socioeconomic backgrounds. The high cost of therapies and restricted access to therapies due to location means that supports for autistic people are limited.20 For example, in a project with Positive Partnerships21 it was recognised that greater supports were required for children in schools.

Ableism and racism intersect for First Nations people with autism and studies have found that First Nations people do not access disability services at the same rate as non-Indigenous people.22 Without equal access to disability support services, health and wellbeing outcomes can be compromised. Similarly, ableism and racism can exacerbate social exclusion, marginalisation, and poor relationships with disability support service providers. Social exclusion can also lead to poorer economic circumstances due to exclusion from the labour market.23

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A protective factor against ableism and racism was support from extended family and community.24 However, misinformation or delayed information around autism or support services can impact the support received for the person with disability. This is of particular concern for children with disability where access to services in the early years of important.25 Bailey and Arciuli26 write that “the ability of families to recognise children’s candidacy for support was viewed as a key factor related to service utilisation.” Without this recognition, needs may go unmet.

## 3.4 Stigma and shame
Stigma refers to an unfair or negative label – in this case, stigma around autism. Stigma can affect an individual’s willingness to seek help, it can contribute to social isolation, create fewer employment or social opportunities, and negatively impact self-efficacy.27 Likewise shame refers to a fear of disapproval from others, or being perceived as in the wrong.28 Stigma and shame are powerful determiners of whether appropriate support can be accessed. Racial prejudice contributed to stigma. Lilley et al.29 wrote that “a history of racist representations of Aboriginal and Torres Strait Islander families has led to a focus on dysfunction and the interpretation of cultural differences in parenting and child care as evidence of neglect and instability.” This stigma, or prejudice, disincentivises First Nations individuals from accessing support from disability services or government agencies in fear of having their children removed from their families.30

Likewise, feelings of shame may mean that parents or carers do not disclose their child’s autism diagnosis which then impacts on the level of support the parent or carer receives as well as the quality of support that the child receives.

A misunderstanding of autism from family or community can also contribute to shame and stigma. As there are overlaps in autistic traits with fetal alcohol spectrum disorders. For example, one study showed that a participant assumed the child had FASD instead of autism and that reflected badly on her as a mother 31

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3.5 Education
The literature reviewed did not focus on education, however references were made
around the limited choice in schooling for autistic children,32 and instances of bullying
at school, restrictive practices, and feeling that school is an unsafe place.33 As

schooling is a predominant activity in the life of a child and their family, it is important

not to underestimate the impact of an inappropriate schooling environment on the
child and their family. When school is seen as an unsafe place, parents and
caregivers are required to mediate in that environment, which can increase cognitive
and emotional load for the parent and caregiver. The impact on the student is also
significant as bullying and mismanagement of student behaviour can contribute to
experience of trauma.

3.6 Care giving
Within the literature reviewed, the primary care tasks included “assisting their

children, including adolescents and adults, with toileting, restricted food preferences
and the need for regular prompting to undertake tasks.”34 Another task was ensuring
their child’s safety, whether this was at home or at school or in public spaces.35

In addition to fundamental caring tasks, care giving tasks were attitudinal where
“mothers tried to convey a positive view of autism to others”36 whilst also allowing

their children to express themselves in ways that suit them even when behaviours
may be unconventional to neurotypical people.37

3.7 Cultural model of inclusion
The literature reviewed emphasised the importance of culture, community and

inclusion. For example, disability is not labelled but it is accepted and included in
community and culture.38 In another study, one participant stated that her autistic son
was “treated as an equal.”39 Equality also meant that disability labels were not
applied. Disability was considered a Western convention.40 Whilst equality and

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acceptance were given in First Nations communities, practically, there were

instances where it was difficult for an autistic child to be included in cultural activities.
The size of crowds and social expectations meant that it was impractical to attend.41

Studies showed that cultural safety was of high importance to families with autistic
children.42 Cultural safety can include cultural competency training for service
providers which can mitigate racism43 and it can include Aboriginal and Torres Strait
Islander support workers in each service sector.44 First Nations support workers and
liaison staff provide affirmation, cultural acceptance and belonging.

  4. Findings

FPDN undertook a consultation process with First Nations autistic people and

parents and carers to determine what the key issues were facing this cohort. The

consultation was dual phase comprising interviews and a survey. The findings from

both phases will be discussed in section 4.1 interview findings, and 4.2 survey

findings.

4.1 Interview findings
Four qualitative interviews were conducted with First Nations people and iteratively

coded. Themes were determined through frequency and relevance to the key

question “What are the key issues facing First Nations autistic people?” The findings

from the interviews are divided into subheadings reflecting the themes and all

participant names are changed to protect privacy. The pseudonyms of the four

participants are Samara, Irene, Freya and Aunty. More details about the interview

process are found in section 2.2 method section.

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4.1.1 Health

The autism journey

This section looks at the diagnosis journey for families around autism.

Samara, as carer for her young son, said, “We were at a routine check-up at 18

months with our first son Lucas and that was when we weren’t up-to-speed with

some of his motor skills and … communication.” The diagnosis journey was

unfamiliar to Samara who said, “it was really alien to even know that there were

signs and symptoms of being autistic.” The assessment process took “about six to

eight months to get that diagnosis.”

Irene was late-diagnosed autistic. They also had “ADHD and … some other multiple

forms of disability.” Irene’s daughter “has also been diagnosed autistic.”

As a child, Irene felt that they were different as they “felt like [they] didn’t fit in the

mould.” Irene said, “when I became a parent, even with my own daughter, I didn’t

pick the autism because she was like me. So, there was this whole narrative of ‘Oh,

she’s just like me. She’s sensitive, she doesn’t sleep. She’s weird with foods. She

likes structure. Oh, she’s just like me.’”

Accessing an autism assessment is different based on financial circumstance. Irene

noted that “the assessment time for a child in Tasmania who is accessing our state

government-based funded service … the wait time is up to two years for a young

person trying to access that.” However, self-funding the assessment through a

private system allowed for a quicker access to assessment. Irene said, “we are

financially privileged…and we were able to fund that…if she had not got her

assessment when she did, she wouldn’t have been able to have a lot of that early

support to help her when she was six. That’s the thing – the early assessment, early

diagnosis helps with extra supports.”

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Irene acknowledged that without an early diagnosis of autism, “we go through a lot of
trauma and violence by not knowing what we know.” Without knowing one’s autistic
identity and the susceptibilities linked to this, Irene said that “trauma and violence is
a big theme…I have over a dozen incidents of sexual abuse and sexual assault in
my childhood and teen years and…I think that that’s so important to be assessed
and supported early on.”

Freya also had a late diagnosis of autism. She said, “I didn’t grow up knowing I was
autistic so, you know, I in retrospect can see so many different autistic traits in
myself.”

*Health profile*

Freya has other health conditions co-existing with autism. She said “I have a very
complex health profile which means that I have a very big team of people involved in
my care and it’s not really a team that can be provided by your local AMS, Aboriginal
Medical Service…I literally see, or have seen…neurologists, neurosurgeon, neuro-
ophthalmologist, optometrist, gastroenterologist…immunologist, I have a dietitian, I
have a physiotherapist, I have an occupational therapist, I have a special hand
physiotherapist, I have a cardiologist, gynaecologist…” While there is immense
benefit in accessing multiple health professionals, Freya experienced an additional
load by coordinating the care and communicating her needs and medical information
to each health professional. She said, “I guess one of the things I struggle with is that
none of them talk to each other; there’s no coordination between my care so I have
to do all of the admin and record-keeping for that.”

Within the health service, Freya experienced discrimination around her presentation
as an Aboriginal person. She said, “none of the records they keep are ever accurate;
I’m always having to correct their records…because I’m fair-skinned that I constantly

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find that even if I’ve ticked ‘Yes, I’m Aboriginal’ the box gets unticked and so you
have to correct that as well…It makes me feel invalidated. It also makes me feel like
a small amount of shame as well.

Timothy also had multiple health conditions co-existing with autism. He had an
operation at 10 months old, had a traumatic head injury when he was 9 years old,
and has a diagnosis of schizophrenia although Aunty said, “he doesn’t take any
tablets for his schizophrenia.” Aunty also said that Timothy has ADHD.

*Burnout*

Freya spoke about the impact of autistic burnout, particularly around coordinating her
health care. She said, “When I’m in autistic burnout…trying to just coordinate all of
that just to get basic care is like yep.” Freya described the effects of burnout in this
manner: “I feel like my chronic fatigue gets worse, I get a lot more anxious – I have
like baseline anxiety that just sky rockets so I think really negatively, I get really
irritable, I also find too that my resilience for minor routine changes or disruptions is
out the door…I really struggle with social interaction; I find it really hard to reply to all
my messages from friends, I feel like my executive functioning goes out the window.
There are periods where I’m either non-verbal or I just really struggle to articulate
how I’m feeling or what I need.”

Burnout, for Freya, operates on a “boom and bust cycle” but Freya doesn’t have the
resources to take a break from work and other commitments. She said, “it comes
down to money for me; I have no savings, I financially support my dad, I have no
access to any form of intergenerational wealth so you know, I need to work minimum
four days a week to be able to be okay and that is particularly because my medical
fees…the amount in the past two days I’ve paid I would say close to a grand in
medical fees.” The medical expenses are ongoing and costly, and Freya said if she
were to “reduce my work days and if I was to try and access the DSP or whatever, I
wouldn’t be able to afford the specialists I need” so the cycle of burnout continues.

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4.1.2 Supports

Samara, mother of Lucas sees herself as “a very persistent person” who pursues
opportunities and supports for her child. She said, “as a mum, and as a carer, the
best way that we’re doing things at the moment is just making Lucas be safe in
whatever environment that he is in.” Lucas’s support needs go beyond his immediate
safety and include being accepted. Samara said, “I think just being a minority group
already as Aboriginal people, and then my son fitting into this minority of being
disabled as well, that it’s a challenge to be able to think about a future, his future.”

Timothy had already experienced the challenges of fitting in and finding a safe
community. Aunty said that Timothy “hasn’t got friends.” Another of Timothy’s
support needs is with emotional regulation. When Timothy was in a heightened
emotional state, Aunty said, “I used to argue with him and get into the same
argument but now I just sit there calm. I say, ‘You know you need to bring it down a
bit, don’t you?’” Aunty had found ways to help Timothy regulate his emotions.

4.1.3 Education

*Preschool*

Samara was adamant that the education system had to be culturally safe for her
autistic son, Lucas. She was able to access an Aboriginal pre-school for Lucas that
“was an inclusive environment where everyone was equal.” Samara recognised that
not everyone would find pre-school “somewhere that they feel is safe” however for
Lucas, he “loves the routine, and he loves learning new things” so it was a good fit
for her family.

*Primary and secondary school*

When Samara’s son was to begin primary school, she found that accessing
appropriate school was hard as Lucas required a position in a support unit at a

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mainstream school. She said, “we didn’t know that there was a process that you had
to do with the Department of Education, like a panel.” In addition to this, there was
the uncertainty of which support unit and school they would be allocated to. She
said, “you get given a radius of…50 kilometres…is it realistic for people to have to
travel 40ks to school every day, twice a day?”

Samara’s recommendation was that the “education system needs to work better with
supporting families with disabilities” and for it to be “moulded to what the individual
needs.”

Aunty, a carer for her grandson Timothy, found that when communication was absent
from the school, issues could occur. She said, Timothy “went into school one day
and his proper teacher wasn’t there and another teacher was there, so he played old
Harry and I had to go up and get him.” When Aunty asked Timothy why he caused a
fuss he said, “nobody told me that the teacher wasn’t going to be there.”

Irene and Freya, both autistic individuals, indicated that they didn’t struggle
academically at school. Freya attributed her academic ability to camouflaging her
autism and need for support. Irene said, “my behaviour in high school was really
poor because I was undiagnosed autistic and struggling in school…because I was
labelled as having a gifted IQ, they saw me as the smart kid that got good marks but
the wheels were falling off internally, but nobody saw that so I sort of slipped through
the system of getting support.”

*Tertiary*

At university, Irene pursued an autism assessment as “uni wouldn’t give me any
accommodations without that proof of diagnosis.” The need for formal diagnosis
creates an ableist and classist system where only individuals who can afford and
access assessments can receive supports.

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Similarly, trying to fulfil all the requirements of a university degree can disadvantage
an autistic individual, as well as others with chronic illness, disability, and financial
precarity. Freya had a mandatory work placement for master’s degree and said, “if
you have cultural responsibilities and need to take leave, if for instance, someone
dies and you need to take leave…absolutely no disability accommodations, despite
asking. They don’t really care about autistic burnout.” Freya also said that this was
similar at her university where “they just don’t see you as a whole person that has to
manage all these different challenges and barriers in life.”

4.1.4 Employment

Irene and Aunty outlined areas of strength and challenge around employment for
First Nations autistic people. Irene explained that “being a First Nations person…I
don’t ever feel like I’ve experienced direct discrimination because of that but…I think
it’s purely because I’m fairly privileged, financially privileged…I’m educated.”
Although Irene had not experienced racism, they explained that “over a year ago, I
left a workplace that had a lot of bullying and abuse in that workplace.” Irene
recognised the autistic strengths that contribute to their work, explaining that “we’ll
work extra, and we’re loyal, and I think in the workplace we can quite often put up
with more crap than what we should because of those traits that we have.”

Aside from bullying, Irene experienced discrimination through the ableist beliefs of
their work colleagues. They said, “it’s hard to call it discrimination because it’s really
hidden…if I’m at work and I’m in a staff meeting, I really like to have closed captions
when I’m in a space with a lot of people so I can read and keep track of what
everybody is saying, so it’ll be little things like someone won’t turn on the closed
captions…It’s assumed that everybody’s neurotypical, and you know, they don’t have
an understanding of autistic burnout or sensory overload.”

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Aunty explained that Timothy experienced issues in gaining employment. She said
that the employment agency “got Timothy a job but he can’t go…he doesn’t want
anybody to go and talk about his head injury.” To accept this job, along with the
support from the support worker, the workplace needed to be informed about
Timothy’s head injury and the impact that might have on his ability to work and
socialise. Aunty wanted the employment program to “think of his dignity” and not
disclose his head injury.

Aunty would also like government and employers to “take these kids on their merits”
instead of having a deficit approach around employment. She said, “Timothy’s not
alright by a long shot but he’s capable of working with somebody.” She would like to
see that opportunity, in a strengths-based environment, for Timothy.

4.1.5 Justice

Growing up, Irene’s father “was heavily criminalised and had multiple terms of
incarceration” which impacted Irene throughout childhood and adulthood. Irene, as a
child, also experienced the justice system. They said, “as a result of the trauma and
my lack of identity of who I was, I just started using lots of drugs and alcohol…I
ended up being charged as a juvenile.” This experience in the justice system was
“traumatic” due to their own father’s incarceration. Whilst Irene has now grown up
and works in an environment where they can “fight systems and power and prevent
violence” they “still have some element of not trusting in police.”

Aunty spoke about the police and their interaction with her grandson Timothy who
has “no filter” when it comes to speaking what he is thinking. Timothy had said, “’I’m
going to kill that one, I’m going to get a knife and stab him.’ So the police have got
him under the radar.” Aunty recognised the words as evidence of frustration and
being upset, whereas the police saw it as a threat. Later,

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“Timothy was tackled. He was riding his bike, he didn’t hear [the police] because he
had his ear plugs in which is what kept him calm, and they pulled him over and he
didn’t hear them saying, “Stop, stop” and they tackled him, you know.” This resulted
in Timothy “fighting them back, rip[ping] their clothes, scratched them, he scratched
them.” Timothy ended up in the cells at the police station where Aunty explained to
the police that Timothy had “a traumatic head injury” which makes him speak out
without thinking.

Aunty recognised that there had to be a way that Timothy’s conditions and
responses could be visible to police so that they could respond to Timothy
appropriately. She said that there should be an identifier to let the police have “a
better idea of what they are dealing with.” A similar practice has been implemented
through the organisation Hidden Disabilities Sunflower45 which has an opt-in lanyard
or badge to show that the wearer is disclosing they have a hidden disability and need
additional support.

Freya did not have direct experience with the justice system, however she was
familiar with the challenges that First Nations autistic people face. She said, “if you’re
an autistic Black fella, actively approaching the police because you want to report
something that’s happened to you, a type of violence, whether it be sexual violence,
physical violence, whatever, one, you’re likely not to be believed because you’re
Black, or you just feel like they’re not going to invest the same time or value or
resources into doing whatever you’re wanting them to do, but two, you’re not going
to be believed because you’re autistic and that compounds, it’s like well, what’s the
point?” Freya advocates for safe places for First Nations autistic people. She said,
“in terms of seeking justice, there needs to be other places autistic mob feel safe to
go.”

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4.1.6 Culture

Culture was an integral aspect for all interview participants. Aunty explained that
Timothy has “got the culture” and “knows all of his rellos.” She said, “all my kids, all
my grandkids, and all my great-grannies, they all know they’re Aboriginal…I always
say to be ashamed of yourself is to be ashamed of your mum and dad, and your
grandparents.”

Samara also spoke of the importance of culture. She said, “we reside on Country…I
think that if I’m on my own Country and I’m supported both spiritually, physically,
emotionally, then my kids are probably better off in that situation where they feel
supported and that they get the best out of who I am.” Having cultural goals
embedded in the NDIS plans was important for Samara and her family. She said that
cultural goals “might actually spark interest to look outside the therapy room for
once, and do their own research around the actual person and not the problem.” One
of the issues that Samara found was that there was “no option in the NDIS process
for us to embed cultural or culturally authentic goals.” Samara spends time educating
therapists and service providers about First Nations culture and the importance of
having culturally safe practices and using “First Nations artists and illustrators to
support the learnings for your children or the participants and their family to feel
safe.”

Both Freya and Irene were either unaware or disconnected to culture when growing
up. Irene said, “my ancestry was hidden in shame” but “when I connected with
community, I just felt like I’d come home.” Freya found that “moving closer to Country
allowed me to have not only more connection to places where my family had
lived…but also broader community and bigger histories in the area.”

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Freya and Irene also talked about the overlap between being First Nations people
and autistic where Freya didn’t feel “like I’ve ever felt shame from other mob…I
never felt weird about stereotypical autistic traits.” Irene commented that, “there’s
such a big cross-over there in that disability space of being Aboriginal and
neurodivergent – it blows my mind how many of us there are there, and in the queer
community, trans and gender diverse folk; huge cross-over there with being autistic.”

4.1.7 Community

Community closely links to culture. Freya said, “when you’re part of a community,
being able to access everything you need from the one place, rather than having to
constantly feel like you’re having to go to all these different services I think is
important.” Irene felt that connecting with community “felt like I’d come home.” Freya
also said, “it has been really nice too to connect with other mob who have my
specific disabilities.”

Community includes having specific First Nations support centres or liaisons. Aunty
said, “we’ve got to have somebody there that understands the Aboriginal way of
life…It’s a sense of knowing, a sense of belonging.” Aunty explained, “my son, for
instance, he works at the hospital as a wardsman…he loves his job but everybody
that goes in there, when they see him, they just feel a whole lot better, you know.”
Freya said that she would like to “access an Aboriginal Medical Service that has a
social and emotional wellbeing model of health care but because I need to see all
these specialists, it just doesn’t work for me but that means that my only option is
people that do not come from that Aboriginal health lens.” Even with the AMS, there
are limitations. Samara said, “just because they’re an Aboriginal Medical Service, or
a space that is for us, doesn’t still mean it’s accessible because communities have
this fear around confidentiality, or you know, your aunty or uncle is the health nurse,
or the mental health nurse, and sometimes people don’t want to tell their story to
their family members so they either don’t do that, they don’t get the support.”

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Freya found another aspect of community at university in the Aboriginal support unit.
She said, “amongst community at [the Aboriginal support unit] it’s like, we’re actually
in community together. We look after each other.” Freya experienced this community
and support when a family member died and the Aboriginal support unit at university
provided her with an emergency bursary, saying “don’t even worry about it. We’ll sort
it all out.” This gave Freya the time to grieve without financial stress.

4.1.8 Best Practice

The interview participants had the following advice for government and policy
makers. Their advice, coming from a place of lived experience, can be modelled as
best practice.

*Culture and cultural safety* are of high importance to First Nations individuals and
communities. Aunty spoke about the importance of Aboriginal support workers in
each field: in education, housing, employment and justice systems. Having culture
and community embedded in each domain provides a sense of belonging and safety.

Samara also spoke about embedding “a cultural component into NDIS plans” for
First Nations people. In addition to this, Samara said, “include us in the conversation”
around issues that impact First Nations autistic people. She said, “decisions are
made without us being embedded or even having a voice around it.” Including First
Nations autistic voices in issues that affect them ensures that solutions can be
culturally safe and appropriate.

Irene recommended that *education* is provided for teachers of First Nations autistic
students. This is particularly important as late diagnosis of autism can occur due to
cultural differences from non-Indigenous groups.

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Recommendations around education went beyond school. Irene also recommended
education within the justice system around autism with “better support in the justice
system for young people who are autistic”. Aunty echoed this recommendation,
saying that education needs to be provided for justice personnel on how to relate to
individuals with disability, including autism.

Other recommendations were in the form of *additional support* for First Nations
autistic people. Irene recommended “better access to assessment and diagnosis” of
autism. Additionally, Irene spoke of how “First Nations autistic people have so many
barriers to accessing the NDIS” with the recommendation of providing additional
supports to accessing the NDIS.

Freya recommended having “paid autistic burnout leave.” This recognises the
intense state of autistic burnout that many autistic people experience which impacts
on individual functioning.

A final recommendation around supports is “having an inherent understanding that
racism and ableism, they go hand-in-hand, they feed off each other and they fuel
each other.” First Nations autistic people experience intersectionality and
disadvantage around culture and disability.

4.2 Survey findings
Alongside the qualitative interviews, a 15 question, qualitative, online survey was
conducted over an 18-day period through FPDN social media channels. The
responses were anonymous and the percentages in this section of the report are

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rounded to the nearest whole number. Many of the responses have been kept in
their original form, such as spelling, punctuation and grammar.

The findings of the survey are shown in the order they were asked in the survey.

*Question 1* required informed consent to participate in the survey. *Question 2*
provided details of the age range of respondents (shown in Table 2, page 11), and
*Question 3* asked details of geographical location of participants (shown in Table 3,
page 12).

Q4 Are you a First Nations person?

97% of respondents indicated that they were Aboriginal (n=38).

2% of respondents indicated that they identify as both Aboriginal and Torres Strait
Islander (n=1).

Q5 Are you autistic?

61% of respondents said yes (n=24).

38% of respondents said no (n=15). A ‘no’ response exited participants from the
survey.

Of the 61% of ‘yes’ respondents, some respondents may not have a formal diagnosis
– which is evident in some of the survey responses. It is important to recognise that
self-diagnosis of autism is valid and important, particularly when acknowledging that
diagnosis is costly and inaccessible to many.

Q6 Did you know you were autistic when you were growing up? How did you
become aware?

The responses for this question were grouped into the following themes: knowing as
a child; knowing because of friendships; through noticing difficulties; through a child’s
diagnosis; through late diagnosis.

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*Knowing as a child*
Two respondents knew that they were autistic in childhood. One wrote, “Yes. Thru
testing when I was 9” and the other wrote, “Diagnosed as a child, the information
was withheld from me until I was ~15 years old.”

A third respondent knew they were autistic as a child but did not have it confirmed
until adulthood. They wrote, “I knew I was autistic as a kid, because my best friend
was autistic and I identified with a lot of the same experiences as him. However,
when I told my mum about it, she was adamant that I was not autistic, so I let it go. I
circled back to the realisation in 2020, when I watched the show Everything's Gonna
Be Okay.”

*Knowing because of friendships or significant others*

Family, friends and medical professionals were influential in helping respondents
seek an autism diagnosis. One respondent wrote that they “Had no Idea. Became
aware when my brother-in-law was doing his masters concerning autism and
education.” Another wrote, “I became aware later in my early adult life around 24
years old. There were many things that didn't add up about me and my behavior
growing up. I was only diagnosed as ADHD and not Autism despite having a sibling
diagnosed with Autism and a mother who now realises she has Autism too.”

Others wrote, “No I found out recently. I became aware from other autistic people
encouraging me to explore diagnosis,” and “No, I was late diagnosed with ADHD at
21 years old and a year or two later my GP (who was autistic herself) suggested I
seek a diagnosis for autism.” Lastly, a respondent wrote, “No I did not know. It wasn't
until I met other autistic females and did my own research, that it started to make
sense.”

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*Through noticing differences or difficulties*

For some respondents, the awareness of being autistic was due to noticing
differences in themselves and/or experiencing difficulties that were not common to
neurotypical individuals. Some respondents wrote, “No. I just felt different. Others
seemed weird to me,” and “No, I became aware due to extreme struggles with social
aspects of life and ease with academic and intellectual aspects of life. I have not
been diagnosed as I am worried about the consequences.”

Another respondent became aware of being autistic through the experience of
burnout: “But I became aware from other autistic people as an adult, who saw traits
in me. I also had huge autistic burn out at 30 that I couldn’t explain until now I have a
diagnosis.”

A carer of a young autistic person wrote, “I'm my daughter [name] 21 voice yes she
knows she's different. She went into quite world at 7 months old cramping every day
and night. At 11 months mal seizures she's highly intellectual and autistic.”

Growing up in a remote community delayed a diagnosis for one individual. They
wrote, “No, I grew up in remote places where there weren't many other children. I
interacted with adults and that's what I was comfortable with - I talked early, and a
lot. It wasn't until I was in my early 30s that I was formally assessed and diagnosed
due to some relationship issues and problems with my work environment.”

*Through a child’s diagnosis*

In the late-diagnosed autistic community it is not uncommon to recognise autism in
oneself after a child’s diagnosis. The following three respondents explained that this
was true for themselves. One wrote, “No. Thru son's diagnosis.” Another wrote, “No,
I had no idea growing up. I did not realise until my daughter was diagnosed with BPD

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and I just knew the diagnosis was wrong. This sent me down multiple rabbit holes
that ended with my daughter getting an ADHD and ASD diagnosis as an adult, then
realising I too am an ADHDer and I’m Autistic.” And the last respondent wrote, “No.
In recent years, my 3 youngest children have all been diagnosed with ADHD and
ASD.”

*Late diagnosis:*

Other respondents did not provide context around their late diagnosis. They wrote,
“No, late diagnosed at age 39,” “No I was diagnosed when I was 50” and “No, I was
only diagnosed last year.”

Q7 How old were you when you became aware that you were autistic?

There were 19 responses to this question. The ages of the respondents are shown in

Table 4. The age range was between 7 years of age and 52 years of age.

Table 4: Aware of autism

| Age of autism awareness or diagnosis | Total of respondents |
| --- | --- |
| 7 | 1 |
| 8 | 1 |
| 9 | 1 |
| 15 | 1 |
| 22 | 1 |
| 23 | 1 |
| 24 | 1 |
| 26 | 1 |
| 32 | 1 |
| 33 | 1 |
| 34 | 1 |
| 35 | 1 |
| 38 | 1 |
| 39 | 1 |

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| 40 | 1 |
| 42 | 1 |
| 50 | 1 |
| 52 | 1 |

Q8 How have you found accessing early intervention and supports?

This question was intended to gauge respondents’ interaction with early interventions
for young autistic people. However, the wording and context of the question meant
that early interventions and supports were interpreted as interventions and supports
that were available soon after the autism diagnosis. The responses to this question
were grouped as positive experiences, challenges to accessing support, and not
trying to access support.

*Positive experiences*

From a carer’s point of view, their daughter had a positive experience with early
interventions and supports: “Yes she was already attending SDS school she had all
early intervention and support from school and early age.”

*Challenges to accessing support*

The responses to this section were brief and highlighted the difficulties in accessing
support, whether it was intervention as a child, or support as a newly diagnosed
adult. The responses are:

* “Terrible.”
* “I was never able to access early interventions or supports.”
* “Difficult via NDIS system access.”
* “Expensive, traumatizing & difficult.”

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* “Haven't found any.”
* “Absolutely inaccessible. Especially as an adult recently diagnosed and
deemed "highly functional" by most doctors, psychs and most alloistic [sic]
individuals.”
* “Hard. And expensive.”
* “Challenging.”

*Did not attempt to access support*

Some respondents did not try to access interventions or supports for autism.
Reasons included not needing support at the time, an autism diagnosis later in life,
and sourcing supports privately without government help. Their responses are as
follows:

* “I haven’t.”
* “This is n/a for me, as I found out at 40 and my daughter found out at 21. One
thing I can say though, is getting in to see a psychiatrist is near impossible,
and access to a diagnosis is further denied through extremely high costs for
assessments.”
* “Ok I have managed myself with my psychologist for the past 10 years.”
* “I haven’t accessed early intervention or supports.”
* “My diagnosis was missed as a child so I did not receive early intervention or
supports.”

Q9 What are your experiences of accessing or being in education settings
(school, uni/TAFE, or other education settings)?

This question aimed to ascertain whether being a First Nations autistic person has
had an impact on education. This section is grouped into the themes of positive
experience, difficulties, social impact, and racism.

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*Positive experience*

Positive experiences were where both parent and child were supported. One
respondent wrote, “As her mum I learnt everything about this new journey we were
both on from 11 months old. Learning basic sign workshop. Learning about
intellectual disability. Pod book workshop at her SDS school. Behavior in children
and adolescents workshops throughout the years. Learning everything about
disability packages NDIS workshops.”

Another respondent wrote that their educational experience was “Good. It is difficult
to navigate administrative and enrolment tasks, and it is difficult to manage the social
aspect. Overall I enjoy being in education settings but there are challenges. I have
an IEAP which was easy to arrange but still challenging to implement on my own.”

One respondent did not cite difficulties and did not seem to need support in their
educational setting. They wrote, “I was not aware that I was autistic when I was at
school or studying.”

*Difficulties in educational settings*

Other respondents experienced difficulties in educational settings and had
comments like, “It's difficult,” and “Frustrating and debilitating,” and “Practically
impossible. Most of the disability support is around depression and anxiety rather
than neurodivergence and chronic health issues. Universities and staff are mostly
unwilling to support you at all and leave it all to the individual to work out. My
previous units disability service and the Indigenous officers at the uni were not willing
or knowledgeable to support me.”

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Others wrote about lack of supports which increase challenges. One respondent
wrote, “There was no neurodiversity support at my school, just corporal punishment
& I dropped out at 15 years old.” Another wrote, “My diagnosis was missed as a kid
so I did not access any special requirements during school. I struggled at university
and was not able to get reasonable accommodations for ADHD, so I left. Overall
school was pretty traumatising for me and university was also inaccessible for me.”
And a further respondent wrote that the education experience has been difficult and
“I am struggling now I am doing a research degree at [university].”

*Social issues*

There were also specific difficulties around social communication or interaction. One
respondent wrote, “School was ok. I was very socially awkward” and another wrote
that did not quite fit in as they were “not part of the 'in' group. Not many friends.”

Two other respondents were okay within the educational environment but still
struggled socially. One wrote, “It was ok for me luckily but I struggled with
understanding peers and struggled with teachers not explaining things” and another
wrote “Ok personally except school bullying but my son had bad bullying and has
dropped out of uni twice.”

*Racism*

One participant highlighted the harmful impact of racism within educational settings.
They wrote, “Schooling was always a struggle for me and my daughter as well. This
was made even worse through the racism we experienced for being Aboriginal. We
were often told by teachers that there was no point taking the time to teach us, as we
are ’just dumb Aboriginals’. I now have an undergraduate, masters and doctoral
degree, and am now working as a Postdoctoral Research Fellow. This was only

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made possible through the support of my parents during my younger years, who re-
taught me what I needed to learn at school, in ways that I could understand. These
ways are deeply Aboriginal - they used storytelling to help me learn and solidify my
learning.”

Q10 What are your experiences of accessing and engaging with health
services?

This question looked at experiences around health services. Positives included
engaging with First Nations health services, and challenges focused on dismissal of
symptoms or lack of support.

*First Nations health services*

Aboriginal Medical Services (AMS) were important for the following respondents.
One wrote, “I have for her a lot of services our own Koorie community and
mainstream.” Another wrote, “Not too bad the AMS is good.”

Another respondent had mixed experiences with the AMS. They wrote, “My
experiences have been mostly neutral with the occasional invalidating responses to
sharing that I am Autistic and need considerations and understanding. I am treated
like I am weird for disclosing that by most health professionals or met with some sort
of reaction of disbelief. This happens even in Aboriginal and Torres Strait Islander
health services.”

*Challenges*

One respondent wrote that their experience with the health system was “Fine”.
However, others had experienced multiple challenges. One respondent wrote that
the experience has been “Frustrating and demeaning,” and another wrote “not good.
I am still trying to access a mental health care plan through my GP. I keep getting
hand balled around to different doctors and nothing explained well enough for me to
understand.”

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Access to neurodivergent health support has also been a challenge: “I’ve been
dismissed and ignored many times with my mental health struggles that all turned
out to be autism and ADHD related,” and “Accessing health services that specialise
in adult ADHD and ASD is near impossible. Not only is it extremely hard to even see
a psychiatrist in the first place, once there, you need to have the excess resources to
fund the appointments! It’s definitely a position of privilege, a luxury.” Similarly,
another respondent wrote, “I think they are exhausting and there are so many hoops
to jump through it’s almost not worth it most of the time. I stopped pursuing an

autism diagnosis after seeing 2 psychiatrists who told me they couldn’t see how I
met the criteria (I didn’t realise how much I unconsciously masked at this stage).”

Others wrote that their experiences have been “very difficult,” “traumatizing &
isolating,” and “overall, terrible. I have many chronic health conditions that I am still
trying to get help for but doctors don’t listen or help very well. Often my physical
health problems are dismissed due to weight and I have been diagnosed with more
than 5 mental illnesses and never been diagnosed with autism.”

Lastly, accessing appropriate support has been challenging as “Providers sometimes
won't see me unless I have NDIS” and they are “not quite believed as I present as an
educated person.”

Q11 If relevant, what are your experiences of accessing or being engaged with
mental health services?
This question has overlaps in the previous health question. Responses to the
question about mental health experiences are grouped into positive and challenging
experiences.

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The unsure responses are based on: “That's a hard question to answer as her mum
she's 21 years old special needs highly intellectual and autistic young youth but her
mentality is not of a 21 year old she's still child like age. Very hard to answer this I
have different views on mental health” and “Average.”

*Positive experiences*
The positives are often interwoven with challenging experiences. One respondent
wrote, “Good now but I couldn’t access them as a young person. I only can see a

counsellor now because mine is free under a program.” Another wrote, “I am
fortunate that recently I have managed to find a psych I click with and had a
Psychiatrist until recently who believed me and diagnosed me. Beforehand I was
always left wondering why counselling and services never clicked for me and what I
needed in them to be helpful. If there was more awareness about Autism in First
Nations and femme presenting people I could have started my true healing journey
earlier.”

*Challenging experiences*
The challenges centred on wait times, affordability, and lack of information around
mental healthcare. Respondents wrote, “They gaslit TF out of me!” “early years
terrible better in the last 10 years,” and “traumatizing & isolating.”

Wait times were frustrating for some respondents who wrote “not good. I am still
trying to access a mental health care plan through my GP. I keep getting hand balled
around to different doctors and nothing explained well enough for me to understand,”
and “They're all booked out in my area. Some have wait lists that are closed.”

Another wrote, “I have only seen the psychiatrist for diagnosis and drug related
appointments for my ADHD. I cannot afford, or would even want to, go to a
psychiatrist for ASD. There is little affordable options for ASD support unfortunately.

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My daughter found a good online service ... It allows her to access support 24/7. She
has found this especially useful for her anxiety. She has been to multiple mental
health providers and found them mostly lacking.”

Other challenges included the overlap of identity and gender. One respondent wrote,
“I have had a really bad time with psychology and psychiatry. I have had unsteady
mental health treatment since I was 14. I have seen psychologists, counsellors,
psychiatrists, been in inpatient programs and day programs. I have had
psychologists blame my problems on being Indigenous and being transgender - that
I must be extremely confused about my identity. I have been put on excessive
amounts of medication because I was deemed aggressive and dangerous when I
had not displayed any of this behaviour - I had just expressed that I felt angry.  I am
luckily now seeing a psychologist … who specialises in neurodivergence and trauma
who I am finally receiving adequate care from.” Another wrote, “Have been
diagnosed with Chronic depressive disorder. No consideration for what I know is
autism.”

Lastly, one respondent wrote about the challenges of discrimination: “Mental health
services particularly public system have always been challenging to access and
discrimination is rife.”

Q12 What are your experiences of accessing, being in, and maintaining
employment?
Employment experiences are highlighted in this section. However, for two
respondents, this question was not applicable: “N/a. I'm a kid” and “Nil.”

Other respondents did not have a definitively positive or negative experience. One
respondent wrote, “I have not had an issue with this, but I do think there is an
interesting thing happening at the intersection of mental comorbid conditions. I
personally do not see ADHD or ASD as brain disorders, although I recognise the

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need to frame them this way to ensure people get support. They are simply different
types of brains, and the issue is multifaceted, with social norms being one major
impacting factor. I think the intersection of ADHD and ASD in my life has positioned
me to easily ’fall under the radar’ so to speak, with an interesting balancing or
compounding effect when the two converge. Where the compounding happens and
the outcome is not socially accepted or desirable, this is where I am suddenly seen
as ‘a problem’ that needs fixing. It is in those instances of my life, where having
issues at work can be a struggle. This non-acceptance of being different only further
exacerbates this, making ‘the problem’ seem even worse. On the positive, I have
found when I am in a good environment, one that understand me and values the
unique attributes I bring to my work, I flourish. Finding the right type of work for each
person unique intersectionalities is so important.” And another respondent wrote that
they have achieved stable employment through the flexibility of their work place: “I
used to struggle with maintaining employment and have been through maybe 20-30
jobs since I started working at 14. I’m in stable employment now but only because I
work with mob and they are flexible to my needs and accommodations (working from
home, use of tools to manage sensory issues etc).”

*Challenges*
The challenges around employment were linked to underemployment,
unemployment, and social issues.

One respondent wrote, “Extremely difficult. Despite having lower support needs I can
barely hold down a job. I experienced extreme burn out when I worked my first full
time job at 18 and have never returned to full time work since. I became physically
unwell and mentally overloaded in a full time role and was questioned about my
health constantly by my employer. I now stick to maximum 2 days of work per week
and I also study full time which works better for me. I worry about my future as I don’t

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feel I have the capacity to work full time but it feels like there’s no other way to keep
up with life and expenses.” Another wrote, “My son struggles it took him till 25 to gain
steady work and its only packing shelves at [supermarket] despite his very high IQ
and grade 12.”

Socially, employment creates challenges. One respondent wrote, “It’s always been a
struggle due to social expectations, and misunderstandings and communication,”
and another wrote, “Have been able to maintain full time employment but often find
myself the target of bullying, and a convenient person to blame or not believed.”

Others wrote that employment has been “Variable. Inconsistent” and “I have always
had a hard time staying employed with one company. I usually will leave and start a
new job as I don’t feel enough support with career progression and understanding
the internal systems (it always feels too hard).”

Racism was also a concern where a respondent wrote, “Very difficult. Most
workplaces are unaware and ill equipped to support Autistic people. There was
always some form of racism and ableism at every job I have been it. It is scary and
exhausting and makes keeping employment difficult. Which in turn effects my
finances, mental health, physical health and social health” and another cited their
gender difference and traumatic background as challenging in the workplace: “very
difficult I am also transgender disabled and … from stolen generation”

Q13 If relevant, what are your experiences with the justice system?
Discussing experiences within the justice system can be a sensitive topic. The
survey responses to this section were distinct in either yes, there was interaction, or
no, there was not.

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The no responses are shown in the dot points:
* “Nil.”
* “Nil.”
* “Not applicable.”
* “I have not had any experience with the justice system.”
* “N/a.”
* “I have a diploma of Justice. No trouble with police.”
* “None.”
* “I haven’t had any experience with the justice system personally.”

The interactions with the justice system are detailed as follows.

One respondent provided a detailed response: “I have only had to deal with the
justice system once, when my daughter stole something as a teenager. I had a very
different experience to my daughter, as she was ’the delinquent’ and when I arrived
and was not the mother they expected to see, their whole demeanour and treatment
of my daughter changed. This was mostly the police that worked in the city at the
time. At the court the judge had a similar reaction and said to her ‘look around you -
look at your mother - you are not meant to be here!’ and he let her go. I dare say this
will be different for anyone who doesn’t look a socially preferred way (presenting as
white, middle to upper class, cis, heterosexual, able bodied, ‘healthy’ BMI).”

Whereas the other responses were brief: “Horrific and abusive,” and “do not wish to
discuss.”

Q14 How has your culture and community contributed to who you are as a
First Nations person?
The responses to this question focused on acceptance, and challenges. The
acceptance responses are diverse in content and provided below:

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* “As her mum my daughter is always with me out and about in our [city] Koorie
community and events to learn her culture. I advocate for our Koorie children
and adolescents within our Koorie community all who have attended SDS
school's and locked behind a lock gate though out there education. Next step
after graduation is disability centers mainstream she not in one. I use her
carer's to take her out I don't trust these centers.”
* “I’m accepted for who I am.”
* “I’ve been supported by so many mob online and in person who are also
autistic. I believe it’s more accepted in our communities.”
* “We are more vulnerable to and sensitive to attacks on our identity and less
able to respond calmly and appropriately. Very painful. But with supportive
mob its fantastic.”
* “I secretly think most Aboriginal people are naturally neurodivergent. Perhaps
because trauma also causes neurodivergence. I find it MUCH easier to know
my place in community than in mainstream spaces.”
* “It's not a big deal with mob. I'm accepted for me.”
* “I think my culture is what has allowed me to be successful in my career. My
parents used storytelling to teach me as a child, where the schooling system
failed me for being Aboriginal and Autistic. The acceptance of individuality in
the context of a collectivist culture makes a huge difference as well.”
* “Knowing that my community is always there to support me lessens my fears
in the world as an autistic person. There are less social pressures when I am
around mob rather than whitefellas. I know my role in community and it feels
good.”
* “I have found that having community particularly other autistic mob in my life
is so so incredibly important to my well-being. Knowing I’m not alone is so
validating and feeling understood by other mob is always really special.”

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*Challenges*

The challenges were around exploring identity. One respondent wrote, “It has been
hard still trying to explore my identity and belonging,” and another wrote, “Through
my culture I am more patient with myself and realise that I am not a broken and
useless person. Autistic people are protected and honoured in culture. Unfortunately
within community the experience is different, especially if you are disconnected like I
am. Some members of my community are incredibly ableist and do not understand
and will even mock you for it. It makes engaging really hard.”

Q15 What would you like the government to know about the strengths or key
issues facing you as a First Nations autistic person?
Three broad themes encapsulate the survey data for this question. One is around
community, and the others are around identity and the supports needed for First
Nations autistic people.

*Community*
Respondents wrote about the importance of community and having culturally safe
centres: “We need our own cultural safe disability centers for our own young youth,”
and “Community is very important and being in mob spaces because they're more
accepting of me as I am.”

*Identity*
Furthermore, identity was inextricably linked to being a First Nations autistic person.
One respondent wrote, “We go undiagnosed for too long. Many of our kids are
diagnosed with ODD when they are autistic and are then criminalised. The
diagnostic system is TOO expensive for most people especially mob. There are no
mob in the diagnosis and autism support spaces.” Another respondent wrote, “I think
they need to look at the whole picture and not use the standard reductionist

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approaches that are all too familiar in Australia’s health system. People need to be
understood as having multiple identities that intersect and form who we are. Our
culture is an important part of our identity, so cannot be forgotten when considering
Autism. A truly holistic approach is needed. Also, there is a need to make
assessments available, as the associated costs and lack of practitioners available,
make this completely inaccessible to the vast majority of First Nations peoples.”

Other respondents wrote, “That Aboriginal people are Black first and foremost, we
cannot leave it at the door to work in the APS where they insist you’re an APS
person first and Black second. Also its really hard to keep your autism 'quirks' under
control to live and work in the neurotypical world,” and “Our identity does not exist in
a vacuum. Policies need to be made to support every facet of an individual’s
experiences. We are not one dimensional people. It needs to be more than
mindlessly splashing cash too and there needs to be better support and
acknowledgement of First Nations Autistic people leading the way and creating
support services for neurodivergent Mob. The solution is not to have autistic non
Mob taking up space.” Others wrote, “Get us to help you translate cultural values in
mainstream contexts because we can see where the patterns converge,” and
“Strengths - autistic First Nations people are so incredible in so many ways. Brains
wiring differently to see the world in ways neurotypicals may not, with a cultural lens
as well mean we have unique viewpoints and experiences. Issues - accessing
culturally safe doctors / diagnoses, trouble accessing health system as it is
somewhat carceral and dehumanising.”

*Support needs*
Coming from the intersection of First Nations and autism, some respondents wrote
about the need for specific supports. One wrote, “We can’t work at the same
capacity as everyone else but we still deserve to live. Help us get into activities and
jobs that utilise our skills and strengths. For me I’m really good at uni and I spend a

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lot of time volunteering, but the social and financial pressures that come with a job
destroy me. Please give us financial assistance and take away the limitations that
come with an autism diagnosis so we can receive help without fear.” Another
respondent wrote that issues facing First Nations autistic people “are cumulative and
people need to stop bullying mob who act/are non stereotypical Blackfellas. Also
JOBS needed that recognise diversity of traits!!!!” Lastly, one respondent wrote that
there are “complexities of who we are we are differently intersected like myself.”

   5. Discussion of the findings

This section briefly combines the data from the interviews and the survey and

discusses the themes from the combined data.

5.1 Health and diagnosis
*Disability model*
Autism assessment in Australia adheres to the DSM-546, or equivalent resource,

which speaks of autism as Autism Spectrum Disorder (ASD) with deficits in key

areas: social communication and social interaction and restricted, repetitive
behaviours. This definition is part of a medical model of disability which focuses on
deficits, disorders or malfunction.47 Although acknowledging the challenges of a

disability or medical condition is important, when it is it the only lens in which it is

viewed it can be problematic and have negative connotations.

An alternative lens, the social model of disability recognises disability as a result of

societal and environmental barriers where society is held responsible for removing
the barriers.48 The social model of disability creates space for disability to be part of
one’s identity.49 There is a growing movement where many people in the autism

community identify as autistic (identity-first language) rather than a person with

autism (person-first language).

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Within the First Nations community another model is important. This is the cultural
inclusion model of disability which accepts and normalises disability and its impacts
without labelling it as a deficit. This creates space for inclusion.50

*Timeframes around assessment*

Irene talked about the current wait time for autism assessment. The extended wait
period was about 2 years in the public system in their state in Australia. Anecdotally,
this is not dissimilar to other states in Australia. When wait times for autism
assessment are extensive then supports are denied to the autistic individual and
their family. Irene, who paid for an assessment for their daughter through the private
system, said how beneficial the lesser wait times were because it meant that their
daughter could receive timely supports before early childhood interventions ceased
at seven years of age.

Age of autism diagnosis is important because understanding the strengths and
support needs of autistic people enables the autistic individual to accept themselves
and to build support networks. For the interview participants, two knew in childhood
that they were autistic, and two were late diagnosed as adults. Similarly with the
survey data, four individuals were diagnosed autistic in childhood and the remaining
fourteen were diagnosed in adulthood. The delay in diagnosis can lead to “trauma
and violence” (Irene) and social struggles. A recent French study51 stated that
sexual violence, which affects 30% of the female population is up to three times that
level for autistic females. The vulnerability of autistic women potentially can be
mitigated if the individual is aware of autistic traits and potential risk factors for
victimisation.

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Similarly, a 2017 paper52 framed the late and misdiagnosis of autistic women as
systemic violence where supports and accommodations are not given due to lack of
diagnosis within the education system and employment; health and wellbeing are
impacted due to sensory needs; and friendships and relationships are impacted
because autistic needs are not recognised. Recent autism diagnosis rates of male to
female in Australia is four to one53 with explanations for this difference focusing on a
different female presentation of autistic traits, masking and mimicking.54 Less
research has gone into understanding non-binary and gender-diverse lived
experience of autism and assessment.

Accessing a timely autism assessment can be influenced by financial privilege and
geographical location. For First Nations autistic people in rural or remote areas,
accessing assessment may not be possible due to the costs involved in the actual
assessment, transport, and accommodation. In addition, to have an autism
assessment, individuals may need to take time off work which can increase the
financial burden. Similarly for First Nations people from low socioeconomic
backgrounds – the costs involved in accessing an assessment may be beyond their
means, further disadvantaging the autistic individual who does not receive timely
supports and interventions.

In terms of mental health, having an autism diagnosis could potentially help mitigate
the risk factors around suicide. Current statistics indicate that autistic people are six
times more likely to attempt suicide compared to non-autistic people.55 In another UK
study a study found that 10% of individuals who died by suicide had autistic traits
which indicated a likelihood of undiagnosed autism.56 These disturbing statistics
highlight the need for timely, culturally appropriate, and financially accessible
assessments of autism.

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5.2 Justice
Further disturbing statistics are present in the justice system for First Nations people.
The Australian Law Reform Commission57 stated that First Nations people, which
represented approximately 2% of the Australian population, were over-represented
within the justice system at 27%. Likewise, Amaze, in a parliamentary inquiry into
Victoria’s criminal justice system, confirmed that autistic people were
overrepresented in the criminal justice system.58 It should be noted that statistics are
unavailable on the intersection of First Nations and autistic people around the rate of
incarceration. Without this data it is difficult to quantify the impact of intersectionality.

5.3 Education
Educational experiences of autistic respondents were mixed in the survey and
interviews. Some indicated that they had exceptional and culturally safe places for
themselves or their children. Others reflected on experiences that were “awkward”
(survey response), involved bullying, and not fitting in socially. Some of these
experiences were still present in tertiary education with participants indicating that
there was not sufficient support for autistic learners, and educational dropout rates
were significant.

The concern with inadequate learning supports for First Nations autistic learners is
that education attainment levels will be low, perpetuating a cycle that impacts
employment and further education. Dr Scott Avery said that young Aboriginal people
were often seen as “Bad Black Kid”59 where disability was misinterpreted as deviant
behaviour and the student was then largely unsupported in school. This educational
response meant that educational outcomes were often poor, leading to poor
employment outcomes and becomes a “matriculation pathway into prison.”60

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5.4 Employment
A good work environment was one where individuals felt valued. One survey
respondent said, “when I am in a good environment, one that understand me and
values the unique attributes I bring to my work, I flourish.” A good environment also
included accommodations in the workplace. One survey respondent spoke about
having flexibility around needs such as “working from home, use of tools to manage
sensory issues.”

Difficulties around employment centred around “social expectations, and
misunderstandings and communication” (survey response) and lack of support
around “career progression” (survey response). Racism and ableism were also
highlighted by survey respondents.

Understanding the challenges and strengths of employment and unemployment for
First Nations autistic people is very important. Statistics from 2018 showed that the
unemployment rate for autistic people was 34% which was around 3 times higher
than people with disability (10%) and over 6 times more than people without
disability (4.6%).61 Likewise “the unemployment rate for Aboriginal and Torres Strait
Islander people were higher than those for non-Indigenous people, across all age
groups.”62 There is no indication of what the unemployment rates are for the
intersection of First Nations and autistic people. It could be hypothesised that the
intersection could elevate the unemployment rate for this cohort.

5.5 Culture and community
Within the interviews and survey data, having First Nations people as support
workers and liaisons was important. Having community to support First Nations
autistic people meant that it was easier for autistic people to know their “place in
community” (survey respondent). Another survey respondent said that having

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exposure to First Nations culture facilitated success in career, and another said that
they know their “role in community and it feels good.” This sense of belonging
facilitates a sense of safety which can minimise anxiety in First Nations autistic
people.

Alternatively, when First Nations autistic people are removed from Country – whether
for employment, access to housing, or for medical appointments – there is a
disconnect from culture and community. For some people, this leads to a
phenomenon known as “heartsick” which manifests in physical symptoms when off
Country.63 Conversely, connecting with culture, community and country is grounding
and provides safety and belonging.

   6. Recommendations

The recommendations are taken from both the interviews and the survey. The
recommendations for government and decision-makers are as follows.

   6.1 Embed culture

        First Nations culture, grounded in the cultural model of disability and First
      Nations understandings of neurodivergence, is to be embedded in each
      aspect of life for First Nations autistic people. This includes but is not limited
       to the areas of health, education, employment, the justice system, and
      housing. Having cultural safety and First Nations disability-informed liaisons
      creates a sense of belonging and safety for First Nations people.

   6.2 Education

       Further education needs to be provided for all service providers around
       autism. The autism spectrum is broad and fluid, meaning that support needs
        for an individual on a particular day may change on subsequent days

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educating police officers on how to approach an autistic person creates tools
    to de-escalate emotions and behaviour that are due to autism.

6.3 Additional supports

   Autism and the accompanying supports need to be viewed through a
   strengths-based lens – not seen as a deficit. Supports are to be flexible and
    tailored based on individual, family and community need, such as having
    flexible accommodations at work, support workers within the justice system, a
   diversionary pathway away from the justice system, and bespoke learning
    plans within the education system. Additionally, having autism assessments
    fully subsidised by Medicare enables equity in access to assessments and
   diagnosis.

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Appendix A

Scoping Literature Review References

American Psychiatric Association, ‘Stigma, prejudice and discrimination against
people with mental illness,’ https://www.psychiatry.org/patients-families/stigma-and-
discrimination, accessed 2 December, 2022.
References

Bailey, B., & Arciuli, J. (2020). Indigenous Australians with autism: A scoping review.
Autism, 24(5), 1031–1046. https://doi.org/10.1177/1362361319894829

Bennett, M., & Hodgson, V. (2017). The missing voices of Indigenous Australians
with autism in research. Autism: the International Journal of Research and Practice,
21(1), 122–123. https://doi.org/10.1177/1362361316643696

Bourke, J., de Klerk, N., Smith, T., & Leonard, H. (2016). Population-Based
Prevalence of Intellectual Disability and Autism Spectrum Disorders in Western
Australia: A Comparison With Previous Estimates. Medicine (Baltimore), 95(21),
e3737–e3737. https://doi.org/10.1097/MD.0000000000003737

Lilley, R., Sedgwick, M., & Pellicano, E. (2019). “We Look After Our Own Mob”:
Aboriginal and Torres Strait Islander Experiences of Autism. Macquarie University.
https://research-
management.mq.edu.au/ws/portalfiles/portal/114274862/114273488.pdf

Lilley, R., Sedgwick, M., & Pellicano, E. (2020). Inclusion, acceptance, shame and
isolation: Attitudes to autism in Aboriginal and Torres Strait Islander communities in
Australia. Autism: the International Journal of Research and Practice, 24(7), 1860–
1873. https://doi.org/10.1177/1362361320928830

Lilley, R., Sedgwick, M., & Pellicano, E. (2021). A hard slog road: Aboriginal and
Torres Strait Islander women talk about loving and supporting their autistic children.
Disability & Society, ahead-of-print(ahead-of-print), 1–26.
https://doi.org/10.1080/09687599.2021.1947193

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## Luke et al. (2022)

Luke, C. R., Benfer, K., Mick-Ramsamy, L., Ware, R. S., Reid, N., Bos, A. F., Bosanquet, M., & Boyd, R. N. (2022). Early detection of Australian Aboriginal and Torres Strait Islander infants at high risk of adverse neurodevelopmental outcomes at 12 months corrected age: LEAP-CP prospective cohort study protocol. *BMJ open*, *12*(1), e053646. [https://doi-org.ezproxy.uow.edu.au/10.1136/bmjopen-2021-053646]

Positive Partnerships, ‘Autism. Our Kids, Our Stories. Voices of Aboriginal Parents Across Australia’.

## Puszka et al. (2022)

Puszka, S., Walsh, C., Markham, F., Barney, J., Yap, M., & Dreise, T. (2022). Towards the decolonisation of disability: A systematic review of disability conceptualisations, practices and experiences of First Nations people of Australia. *Social Science & Medicine* (*1982*), *305*, 115047–115047. [https://doi.org/10.1016/j.socscimed.2022.115047]

## Roy & Balaratnasingam (2010)

Roy, M., & Balaratnasingam, S. (2010). Missed diagnosis of autism in an Australian Indigenous psychiatric population. *Australasian Psychiatry : Bulletin of the Royal Australian and New Zealand College of Psychiatrists*, *18*(6), 534–537. [https://doi.org/10.3109/10398562.2010.498048]

## Shochet et al. (2020)

Shochet, I. M., Orr, J. A., Kelly, R. L., Wurfl, A. M., Saggers, B. R., & Carrington, S. B. (2020). Psychosocial resources developed and trialled for Indigenous people with autism spectrum disorder and their caregivers: a systematic review and catalogue. *International journal for equity in health*, *19*(1), 134. [https://doi-org.ezproxy.uow.edu.au/10.1186/s12939-020-01247-8]

## Tolchard & Stuhlmiller (2018)

Tolchard, B., & Stuhlmiller, C. (2018). Chronic health and lifestyle problems for people diagnosed with autism in a student-led clinic. *Advances in Autism*, *4*(2), 66–72. [https://doi.org/10.1108/AIA-01-2018-0002]

## Wilson & Watson (2011)

Wilson, K., & Watson, L. (2011). Autism spectrum disorder in Australian Indigenous families: Issues of diagnosis, support and funding. *Aboriginal and Islander Health Worker Journal*, *35*(5), 17–18. [https://search-informit-org.ezproxy.uow.edu.au/doi/10.3316/informit.670577298035246]

--- 
                                                                        
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## Appendix B

Yarning about autism

### Survey questions

Your stories matter.
This survey asks about your experience as an autistic First Nations person. Your responses will help inform the consultation process for the National Autism Strategy that the government is creating. More information about the National Autism Strategy can be found in the following link (National Autism Strategy).
Specifically, questions will be asked about the key issues that affect you as a First Nations autistic person.

### Are there any risks?

There are no known risks in being involved. The survey is online, anonymous and accessible. The survey questions may bring up some unhappy times. If this happens, you can call 13 YARN (13 92 76) which is a 24-hour crisis line.

This survey will take approximately 10 minutes of your time and there are 15 questions. Some questions will ask you to tick a box, others will ask for written information.

You can choose what questions you answer and what questions you do not want to answer.

### Q1

By ticking the ‘agree’ box, you consent to your survey answers being used by FPDN to inform the National Autism Strategy.
[tick box – one only]

- Agree
- Disagree

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## Demographics

This section asks questions about demographics

### Q2 What is your age range

[tick box – one only]

- Under 18
- 18-24
- 25-34
- 35-44
- 45-54
- 55-64
- 65-74
- 75+

### 3 What area do you live?

[tick box – one only]

- Urban
- Regional
- Rural
- Remote

### Are you a First Nations person?

[tick box – one only]

- Aboriginal
- Torres Strait Islander
- Aboriginal and Torres Strait Islander
- No

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## Q5 Are you autistic?

[tick box – one only]

Yes

No

This section asks about your experiences of autism.

## Q6 Did you know you were autistic when you were growing up?

[text box]

## Q7 How old were you when you became aware that you were autistic?

[text box – 1 sentence]

This section asks if you have found the following topics challenging or easy.

You are welcome to write as much or as little about each topic in the box below each question.

## Q8 As a First Nations autistic person, have you found accessing early intervention and supports challenging or easy?

[text box]

## Q9 What are your experiences of accessing education as a First Nations autistic person?

[text box]

## Q10 What are your experiences of accessing health services as a First Nations autistic person?

[text box]

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## Q11 What are your experiences of accessing mental health services as a First Nations autistic person?

[text box]

## Q12 What are your experiences of accessing and maintaining employment as a First Nations autistic person?

[text box]

## Q13 What are your experiences with the justice system as a First Nations autistic person?

[text box]

This section asks about community and culture

## Q14 How has your culture and community helped you as a First Nations autistic person?

[text box]

## Q15 What would you like the government to know about the key issues facing you as a First Nations autistic person?

[text box]

Thank you for taking the time to do this survey. Your stories are important to us.

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Endnotes

1 AutismCRC, ‘Language choices around autism and individuals on the autism spectrum,’ accessed 9 May 2023;
Kristy Forbes, ‘Intune Pathways,’ accessed 9 May 2023; Raising Children, ‘Autism language on
raisingchildren.net.au,’ accessed 9 May 2023; Yellowladybugs_autism, Instagram, accessed 9 May 2023.
2 Australian Institute of Health and Welfare, ‘Autism in Australia,’ 2017, accessed 9 May 2023.
3 Autism Spectrum Australia, ‘Autism prevalence rate up by an estimated 40% to 1 in 70 people,’ 2018,
accessed 9 May 2023.
4 M Bennett and V Hodgson, ‘The missing voices of Indigenous Australians with autism in research,’ Autism:
The International Journal of Research and Practice, 2017; R Lilley, M Sedgwick and E Pellicano, ‘“We look after
our own mob”: Aboriginal and Torres Strait Islander Experiences of Autism,’ Macquarie University, 2019; R
Lilley, M Sedgwick and E Pellicano, ‘Inclusion, acceptance, shame and isolation: Attitudes to autism in
Aboriginal and Torres Strait Islander communities in Australia,’ Austism: the International Journal of Research
and Practice 2020, 24(7): 1860-1873; R Lilley, M Sedgwick, and E Pellicano, ‘A hard slog road: Aboriginal and
Torres Strait Islander women talk about loving and supporting their autistic children,’ Disability and Society,
2021: 1-26; C Luke, K Benfer, L Mick-Ramsamy, R Ware, N Reid, A Bos, M Bosanquet and R Boyd, ‘Early
detection of Australian Aboriginal and Torres Strait Islander infants at high risk of adverse neurodevelopmental
outcomes at 12 months corrected age: LEAP-CP prospective cohort study protocol, BMJ Open, 2022, 12(1); I
Shochet, J Orr, R Kelly, A Wurfl, B Saggers and S Carrington, ‘Psychosocial resources developed and trialled for
Indigenous people with autism spectrum disorder and their caregivers: a systematic review and catalogue,’
International journal for equity in health, 2020, 19(1); B Tolchard and C Stuhlmiller, ‘Chronic health and
lifestyle problems for people diagnosed with autism in a student-led clinic,’ Advances in Autism, 2018, 4(2); K
Wilson and L Watson, ‘Autism spectrum disorder in Australian Indigenous families: Issues of diagnosis, support
and funding,’ Aboriginal and Islander Health Worker Journal, 2011, 35(5).
5 M Bennett and V Hodgson, 2017.
6 R Lilley et al., 2021.
7 S Avery, ‘Culture is Inclusion,’ 2019, accessed 29 May 2023.
8 C Luke et al., 2022, p 1.
9 B Tolchard and C Stuhlmiller, 2018.
10 B Bailey and J Arciuli, ‘Indigenous Australians with autism: A scoping review,’ Autism, 2020, 24(5): 1031-
1046; R Lilley et al., 2021.
11 C Luke et al., 2022.
12 R Lilley et al., 2019.
13 C Luke et al., 2022; R Lilley et al., 2022.
14 M Roy and S Balaratnasingam, ‘Missed diagnosis of autism in an Australian Indigenous psychiatric
population.’ Australasian Psychiatry: Bulletin of the Royal Australian and New Zealand College of Psychiatrists,
2010, 18(6): 534-537.
15 R Lilley et al., 2020.
16 B Bailey et al., 2020.
17 C Luke et al., 2022.
18 R Lilley et al., 2022.
19 R Lilley et al., 2020.
20 R Lilley et al., 2019.
21 Positive Partnerships ‘Autism. Our kids, Our Stories. Voices of Aboriginal Parents Across Australia,’ p. 14.
22 B Bailey and J Arciuli, 2020; S Puszka, C Walsh, F Markham, J Barney, M Yap and T Dreise, ‘Towards the
decolonisation of disability: A systematic review of disability conceptualisations, practices and experiences of
First Nations people of Australia, Social Science and Medicine, 2022, 305.

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## Source release page 87

23 S Puszka et al., 2022.
24 B Bailey and J Arciuli, 2020.
25 B Bailey and J Arciuli, 2020.
26 B Bailey and J Arciuli, 2020, p. 1038
27 American Psychiatric Association, ‘Stigma, prejudice and discrimination against people with mental illness,’
2022, accessed 29 May 2023.
28 R Lilley et al., 2020.
29 R Lilley et al., 2021, p. 20.
30 B Bailey and J Arciuli, 2020.
31 R Lilley et al., 2020.
32 B Bailey and J Arciuli, 2020; R Lilley et al., 2019.
33 B Bailey and J Arciuli, 2020; R Lilley et al., 2019; R Lilley et al., 2021.
34 R Lilley et al., 2021, p. 10
35 R Lilley et al., 2021.
36 R Lilley et al., 2021, p. 14.
37 R Lilley et al., 2021.
38 R Lilley et al., 2019.
39 R Lilley et al., 2020, p. 1865.
40 R Lilley et al., 2020.
41 R Lilley et al., 2020.
42 B Bailey and J Arciuli, 2020; R Lilley et al., 2020.
43 B Bailey and J Arciuli, 2020.
44 R Lilley et al., 2020; R Lilley et al., 2021.
45 Hidden Disabilities, ‘A hidden disability is a disability that may not be immediately obvious,’ 2023, accessed 5
June 2023.
46 American Psychiatric Association, ‘Diagnostic and statistical manual of mental disorders: DSM-5-TR,’ 2022,
accessed 23 May 2023.
47 Australian Government, ‘Disability Discrimination Act 1992,’ 2018, accessed 13 January 2023.
48 People With Disability Australia, ‘Social model of disability,’ 2022, accessed January 9, 2023.
49 APA, ‘Conceptualizing disability: Three models of disability,’ 2022, accessed 9 January, 2023.
50 S Avery. ‘Culture is Inclusion,’ 2019, Advocacy Sector Conversations Forum, accessed 9 January, 2023.
51 F Cazalis, E Reyes, S Leduc and D Gourion, ‘Evidence that nine autistic women out of ten have been victims
of sexual violence,’ 2022, accessed 23 May 2023.
52 M Blakemore, G Robertson, S Hansford, T Richardson, J Dalcombe, S Smith and N McCaffrey, ‘Multiple and
intersecting forms of discrimination against autistic women,’ 2017, accessed 23 May 2023.
53 AIHW, ‘Autism in Australia,’ 2017, accessed 23 May 2023.
54 Autism Awareness Australia, ‘Understanding Autism: Women and Girls,’ 2021, accessed 23 May 2023.
55 P Jachyra, J Rodgers and S Cassidy, ‘Autistic people are six times more likely to attempt suicide – poor mental
health support may be to blame,’ 2022, accessed 23 May 2023.
56 S Cassidy, S Au-Yeung, A Robertson, H Cogger-Ward, G Richards, C Allison, . . . S Baron-Cohen, (2022).
‘Autism and autistic traits in those who died by suicide in England,’ The British Journal of Psychiatry, 2022,
221(5): 683-691.
57 Australian Law Reform Commission, 2018. ‘Disproportionate incarceration rate,’ 2018, accessed 23 May
2023.
58 Amaze, ‘A fair and accessible criminal justice system for autistic people,’ 2021, accessed 23 May 2023.
59 S Avery, ‘Culture is Inclusion,’ 2019, accessed 29 May 2023.
60 S Avery, ‘Culture is Inclusion,’ 2019, accessed 29 May 2023.
61 ABS, ‘Disability, Ageing and Carers, Australia: Summary of Findings,’ 2018, accessed 25 May 2023.
62 ABS, ‘Census of Population and Housing: Characteristics of Aboriginal and Torres Strait Islander Australians,’
2
63 Person

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DOCUMENT 1.3.4

# Lessons learnt

for an Australian National Autism Strategy

>

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## Preface

Autism Asperger Advocacy Australia, known as A4, appreciates the opportunity to bring some initial material to the development of Australia’s National Autism Strategy (NAS). A4 prepared the following brief for the NAS Oversight Committee and its Working Groups.

The Australian Autism Alliance (the Alliance) is providing a separate brief to the NAS Oversight Committee that includes a “stakeholder mapping” describing Australia’s autism sector, and other pertinent information.

The following brief aims to outline issues and tries not to deliver conclusions. That is the task of the NAS Oversight Committee and its Working Groups.

A4 was created in 2002 as a national grassroots organisation to provide systemic advocacy for Autistic Australians and others affected by autism.

The Department of Social Services recognise A4 as a disability representative organisation (DRO) for autism on its [DRO webpage](https://www.dss.gov.au/disability-services/programs-and-services/representative-organisations).

A4 is a member of:

*   the Australian Federation of Disability Organisations (AFDO),
*   the Disability Australian Consortium, and
*   the Australian Autism Alliance (the Alliance).

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## Contents

Preface ..........................................................................................................i
Introduction .......................................................................................................... 1
  What is “autism”? ............................................................................................. 2
  Autism is a distinct disability .......................................................................... 3
  Senate Inquiry .................................................................................................. 4
A National Autism Strategy for Australia ...................................................... 5
International experience...................................................................................... 6
  Behaviour science and autism ......................................................................... 6
Australian experiences of autism strategies and plans ..................................... 6
  National ............................................................................................................. 6
  State level plans & strategies .......................................................................... 9
    Victoria's Autism Plan .................................................................................. 9
   South Australia’s Autism Strategy ............................................................ 11
   ACT – autism abandoned. .......................................................................... 11
Lessons from Intellectual Disability ................................................................. 12
General Lessons ................................................................................................. 13
  What doesn’t work .......................................................................................... 13
  What works ..................................................................................................... 13
Conclusion .......................................................................................................... 14
Annex A. List of Lessons Learnt ....................................................................... 15
Annex B. A4’s suggestion on terminology ......................................................... 16
Annex C. Senate Autism Review Recommendations ....................................... 19
Annex D. Autism in the NDS 2010-20 .............................................................. 23
 NDS 2010-20 .................................................................................................. 23
 ADS 2021-31 .................................................................................................. 24

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## Lessons Learnt

### Introduction

The Australian Bureau of Statistics (ABS) estimates that there were:

- 13,200 Autistic Australians<sup>1</sup> in 1998, and the estimate grew to
- 205,200 Autistic Australians<sup>2</sup> in 2018.

The 15-fold increase in the number of people diagnosed with Autism Spectrum Disorder (ASD) over 20 years needs to be recognised and addressed; this substantial increase in the number of autistic people needs serious attention from government at all levels.

The following material aims to help Australia’s National Autism Strategy (NAS) Oversight Committee and its working groups hit the ground running. It brings together some of the available information.

### Reasons for having a NAS include:

- Autistic Australians need substantially improved life outcomes, and
- the Senate Select Committee on Autism inquiry recommended “that the Australian Government develop a National Autism Strategy”.

As the government’s NAS webpage says, “People within the autistic community have called for a dedicated National Autism Strategy.” The website recognises reasons that include:

- “For many autistic people life outcomes in education, vocation, health and family functioning continue are worse than they should be.”
- “There is a 20-year gap in life expectancy compared with the general population.”
- “Autistic people are also around 7 times more likely to be unemployed than people without disability, and they have a higher risk of homelessness.”

Life outcomes for Autistic Australians are significantly worse than is acceptable. There are issues specific to autism that need particular attention.

While the NAS must identify issues that particularly affect Autistic Australians, its development is likely to inform government about some issues that go beyond Autistic Australians. The development process should inform some aspects of policy, strategy, and programs in ways that benefit all Australians with Disability (AwD), not just Autistic Australians.

<sup>1</sup> [https://a4.org.au/sites/default/files/buckley prevalence 2004.pdf](https://a4.org.au/sites/default/files/buckley prevalence 2004.pdf)
<sup>2</sup> [https://www.abs.gov.au/statistics/health/disability/disability-ageing-and-carers-australia-summary-findings/latest-release#autism-in-australia](https://www.abs.gov.au/statistics/health/disability/disability-ageing-and-carers-australia-summary-findings/latest-release#autism-in-australia)

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## What is “autism”?

Autism is a complex subject – the simple terminology that is often used is unclear.

The South Australian Autism Strategy Discussion Paper collects most of the descriptions of “autism” used in Australia. But only ASD has diagnostic criteria.

There is no clear definition of “autism”. `redacted: s22(1)(a)(ii) - irrelevant material` promotes the use of the terms Autism Spectrum Condition (ASC), possibly abbreviated to “autism”, for the broader spectrum. And Autism Spectrum Disorder (ASD) for a subgroup of autistic people who need support in both Parts A & B of the formal diagnostic criteria, where the term “disability” relates to an autistic person’s support needs.

A recent paper<sup>3</sup> said:

> Autism Spectrum Condition (ASC) is a neurodevelopmental condition that causes anatomical and functional differences in the brain, resulting in difficulties in social communication, repetitive behaviours, and restricted interests (Hadjikhani 2014). The definition of autism historically focused on deficits. Neurodiversity is an emerging term that moves away from a focus on deficit to a focus on neurological differences (Zolyomi and Tennis 2017). This model views [Autistic] disability as being caused by the failures of the environment to accommodate the autistic person’s needs (den Houting 2018), and recognises that autism is also associated with strengths, particularly in the areas of attention to, and memory for, detail and a strong drive to detect patterns (Baron-Cohen 2017).

There are no agreed criteria for ASC but that may not be an issue if there are not resources or support needs tied to the term.

The DSM-5, that describes formal diagnostic criteria for Autism Spectrum Disorder (ASD), is a manual of “mental disorders”. Clearly, this is a deficits and medical perspective.

Historically, “autism” was regarded as a rare and severely debilitating condition.

More recently, the terms “autistic” and ASC encompasses a much broader spectrum of conditions or differences extending beyond “disability”. Many more people are now described as Autistic than was the case in the past.

There is a risk that people who are severely disabled by their autism, who need substantial or constant support, can be forgotten as they are unable to speak up for themselves. Too often, their absence and lack of voice or participation in Autistic conversations is forgotten, un-noted.

<sup>3</sup> Jones, S.C., Akram, M., Gordon, C.S. et al. Autism in Australia: Community Knowledge and Autistic People’s Experiences. J Autism Dev Disord 51, 3677–3689 (2021). https://doi.org/10.1007/s10803-020-04819-3

                                
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## Lesson 1

To be effective, a National Autism Strategy must recognise and respect the whole autism spectrum; it must deliver a spectrum of strategy that matches the heterogeneous Autistic population it aims to support.

Autism is a distinct disability

What follows in this report is based on the view that Autism Spectrum Disorder (ASD) means a person has an Autism Spectrum Condition (ASC, or autism in short) and needs support for both Part A and Part B of their DSM-5 diagnosis.

Many Autistic Australians would like the National Autism Strategy to recognise and promote ASC as a distinct condition. Government and the community generally should:

*   Recognise that ASC is a distinct neuro-logical difference,
*   Appreciate that autistic neurology has a spectrum of functioning at the individual level that aspects of autism vary from beneficial or advantageous to disabling or debilitating,
*   Accept that increased “autism awareness” results in increasing recognition and diagnoses. There may also be other reasons contributing to increasing ASC numbers.
*   Understand that ASC is not a type (nor subtype⁴) of intellectual disability or mental illness.
*   Know ASC often co-occurs (and interacts) with other conditions; often resulting complex presentation.

“Autism” is not as a type of Intellectual Disability (ID) or mental illness.

Many people in the health sector believe “70% of autistic people have an intellectual disability”. Apparently, they also think that addressing the needs of people with intellectual disability will “solve” the problem for the 70% of autistic people with ID … and the other 30% don’t matter as they only have “autism”.

More recent data indicates that currently 25-35% of autistic people have an intellectual disability.

Both the DSM-5 and the ICD-11 treat ASD as a primary disability; they ask that the diagnostic report for ASD also indicate with/without ID. The DSM-IV put PDDs on Axis I, while ID (then called Mental Retardation) was on Axis II. Clearly, the authors of those diagnostic criteria regard ASD as distinct from ID.

ASD is also distinct in that it is a disability with increasing diagnoses as a proportion of the population. Most other disability types have a stable or decreasing proportion of the population.

⁴ The DSM-5 says ASD with two severity rankings, with or without IT, with or without language delay, etc. The DSM-IV had PDD (including autism, Asperger’s and PDD-NOS) on Axis I while ID was on Axis II.

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## Senate Inquiry

The Senate Select Committee on Autism Inquiry report (March 2022) executive summary says:

> Life outcomes for autistic Australians are unacceptably poor. This comes at an enormous personal, social and economic cost.
> Meaningful systemic changes would have an enormous impact, with instances of good practice demonstrating how this can be achieved.
> The drivers of poor outcomes for autistic people are complex and interrelated.
> Generic disability strategies have proven ineffective at improving life outcomes for autistic people.
> A National Autism Strategy should form the centrepiece of efforts to improve outcomes for autistic Australians.
> The National Autism Strategy should be person and family-centred, address whole-of-life needs for all autistic people, and include targeted actions to support vulnerable cohorts.
> The National Autism Strategy should be co-designed by the autism community.
> Accountability will be critical to delivering genuine change.
> Key priorities for the National Autism Strategy should be guided by the recommendations of this inquiry.
> The effectiveness of the National Disability Insurance Scheme for autistic Australians should be the focus of a separate inquiry.

The Inquiry’s report motivates a National Autism Strategy and includes 81 recommendations.

Senate Autism Review Recommendations below suggests how responsibility for the Inquiry’s recommendation might be assigned to the NAS’s four main working groups.

                                
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## A National Autism Strategy for Australia

The Government’s webpage on the National Autism Strategy says:

There is a growing number of Australians on the autism spectrum and with other neurodevelopmental conditions. For many autistic people life outcomes in education, vocation, health and family functioning continue are worse than they should be.

There is a 20-year gap in life expectancy compared with the general population.

Autistic people are also around 7 times more likely to be unemployed than people without disability, and they have a higher risk of homelessness.

People within the autistic community have called for a dedicated National Autism Strategy.

A National Autism Strategy will improve life outcomes for all autistic people in Australia. It will provide, for the first time, a coordinated national approach to services and supports for autistic

The overall problem, or challenge, for the National Autism Strategy is to deliver increasing and lasting improvement in life outcomes, well-being, health, social and economic/financial participation, etc. for all Autistic people in Australia.

Government interest in a National Autism Strategy may be due mostly to autism now being the most numerous primary disability type in the innovative National Disability Insurance Scheme, a development that was unanticipated when the Scheme was conceived. The Productivity Commission’s initial report said that it expected 9% of Australians with profound disability were autistic. In 2018, the NDIA told Senate Estimates that it expected the level Autistic NDIS participants would decrease from 28% or NDIS participants to around 20% at full scheme roll-out, but instead Autistic participants increased to 35% at this time.

Reports® from the Australian Bureau of Statistics (ABS) series of Surveys of Disability, Ageing, and Carers (SDACs) indicate repeatedly that Autistic Australians have especially poor outcomes in education, employment, life, etc. These indicators provide a possible starting point for creating Australia’s National Autism Strategy.

Development of an effective strategy is a major challenge as it has not been done before. While it will not be cheap, it is likely that it can be achieved through redeploying existing funds, but targeting them better at delivering substantially improved outcomes for Autistic Australians in their diverse settings and needs.

> 5 https://www.abs.gov.au/statistics/health/disability/disability-ageing-and-carers-australia-summary-findings/latest-release#autism-in-australia

5
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## International experience

There are two reports on Autism plans, strategies, and programs from overseas. They are reports:

1. from Amaze, a member of the Alliance.
2. prepared with A4 by the Global Consulting Group.

The summary of, and lessons learnt from, these reports are:

> Lesson 2. Autism is a problem elsewhere, not just in Australia.
> Lesson 3. Others have not solved the problems yet … it’s difficult (a wicked problem, no easy answers). This means that expecting “a complete solution” is unreasonable, unachievable … but substantially better outcomes for everyone are achievable.
> Lesson 4. Experience suggests outcomes are better realised when autism is better defined/understood, and the rights of Autistic people are recognised and respected.
> Lesson 5. The autism spectrum needs a spectrum of responses, strategies, policies, and programs across most areas of government to achieve equitable outcomes for Autistic people.
> Lesson 6. Better outcomes need serious effort and money.

## Behaviour science and autism

The role of behaviour science in services and supports for autistic people is perhaps the most challenging and contentious subject for Australia’s National Autism Strategy. The subject is usually ignored in government strategies and plans, especially outside the USA.
A4 was not asked to address it in this document but we believe that the issue needs to be on the agenda for the NAS.

## Australian experiences of autism strategies and plans

>

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## FOI 24/25-1567

• The Helping Children with Autism package (HCWA, 2007) was a substantial step forward, but it was under-funded. At the start, the PM of the day told the autism sector that HCWA was “just a beginning for autism”, but the follow-up, the Better Start program, had nothing to do with autism.

The final report on HCWA<sup>6</sup> contains 34 recommendations. There was no discernible action on any of them. Australia dropped the ball on autism.

The HCWA package lacked a review process and resilience.

• The National Disability Insurance Scheme (NDIS, 2013) has so far, after 10 years of operation, failed to appreciate the need for an autism-specific response despite “autism” having surprisingly (for the NDIA) emerged as the most numerous primary disability type in the Scheme. The NDIS experience so far shows governments have difficulty getting disability strategy, policy, and programs to work effectively. And autism is an especially challenging part of the disability landscape.

• While health sector may recognise ID occasionally, autism is mostly ignored or avoided. For example, the Department of Health and Ageing created a national Health Roadmap for Intellectual Disability without any reference to autism. The impact of the widely held misconception in the health sector of 70% autism co-occurrence with ID (see *The DSM-5*, that describes formal diagnostic criteria for Autism Spectrum Disorder (ASD), is a manual of “mental disorders”. Clearly, this is a deficits and medical perspective.

Historically, “autism” was regarded as a rare and severely debilitating condition.

More recently, the terms “autistic” and ASC encompasses a much broader spectrum of conditions or differences extending beyond “disability”. Many more people are now described as Autistic than was the case in the past.

There is a risk that people who are severely disabled by their autism, who need substantial or constant support, can be forgotten as they are unable to speak up for themselves. Too often, their absence and lack of voice or participation in Autistic conversations is forgotten, un-noted.

Lesson 7. To be effective, a National Autism Strategy must recognise and respect the whole autism spectrum; it must deliver a spectrum of strategy that matches the heterogeneous Autistic population it aims to support.

• Autism is a distinct disability above), is enormous and disappointing.

• For more than a decade, the ABS SDAC has been reporting abysmal employment and education outcomes for Autistic Australians yet little or nothing was done.

<sup>6</sup> ARTD Consultants, *Evaluation of the Helping Children with Autism Package* (FaHCSIA components), Technical report, FaHCSIA (27 January 2012).
[https://www.dss.gov.au/sites/default/files/documents/10-2014/hcwa-technical-report.pdf](https://www.dss.gov.au/sites/default/files/documents/10-2014/hcwa-technical-report.pdf)

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## FOI 24/25-1567

• Australia’s refusal to develop a meaning approach to clinical practice standards or professional registration relating to behavioural supports⁷ continues.

Lesson 8. An effective National Autism Strategy needs to be:

a. Resilient, robust and effective – safe and protected from bureaucratic erosion.
b. Reviewed formally and regularly (at least bi-annually)

General disability programs and policy usually ignore autism, or at least trivialise autism.

The National Disability Strategy 2010–20 (NDS, see Annex D. Autism in the NDS 2010–20 below) cited HCWA and claimed there were 8 ASELCs – when there were only ever 6 of them. The NDIS abolished HCWA and few of the ASELCs survived their transition to the NDIS. These autism-specific programs did not survive bureaucratic and political review processes. They were not resilient.

Australia's Disability Strategy 2021–31 (ADS), the successor of the NDS, did not adequately address the need of Autistic Australians ADS. Despite the emergence of “autism” as the most numerous primary disability type in the NDIS, the only mention of “autism” in the ADS 2021–31 (see Annex D. Autism in the NDS 2010–20 below) is the final add-on in a list of disability types that warrant consideration for built and natural environment. The many other priorities for Autistic Australians did not rate mention.

The National Disability Data Asset has yet to properly validate data relating to Autistic Australians. The test cases for the developing National Disability Data Asset (NDDA) do not inspire confidence.

• Incredibly, the Early Childhood Supports in NSW test case does not mention autism or autistic at all. It does refer to “intellectual/learning” and “psychosocial” disability.

• The NDDA Pilot - South Australian Test Case: Education to Employment test case mentions autism/autistic and Asperger’s disorder together. It reports (Table 3) that there are 2,107 students with Autistic/Asperger’s disorder in contained in the Department of Education data, or (Table 4) that there are 1,704 students in the DSNMDS data with autism. NDIS data indicates there were 9,243 NDIS participants with autism as their primary disability aged 7 to 14

⁷ See [https://a4.org.au/node/1071](https://a4.org.au/node/1071), [https://www.policyforum.net/policy-needs-of-autistic-australians-must-be-met/](https://www.policyforum.net/policy-needs-of-autistic-australians-must-be-met/) also published in Fairfax papers:
[https://www.canberratimes.com.au/comment/behavioural-needs-of-autistic-australians-must-be-met-20151023-gkhark](https://www.canberratimes.com.au/comment/behavioural-needs-of-autistic-australians-must-be-met-20151023-gkhark), [https://www.brisbanetimes.com.au/comment/behavioural-needs-of-autistic-australians-must-be-met-20151023-gkhark](https://www.brisbanetimes.com.au/comment/behavioural-needs-of-autistic-australians-must-be-met-20151023-gkhark),
[https://www.theage.com.au/comment/behavioural-needs-of-autistic-australians-must-be-met-20151023-gkhark](https://www.theage.com.au/comment/behavioural-needs-of-autistic-australians-must-be-met-20151023-gkhark), [https://www.watoday.com.au/comment/behavioural-needs-of-autistic-australians-must-be-met-20151023-gkhark](https://www.watoday.com.au/comment/behavioural-needs-of-autistic-australians-must-be-met-20151023-gkhark) and
[https://www.smh.com.au/comment/behavioural-needs-of-autistic-australians-must-be-met-20151023-gkhark](https://www.smh.com.au/comment/behavioural-needs-of-autistic-australians-must-be-met-20151023-gkhark)

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## F0I 24/25-1567

 years (and 2,734 more aged 15 to 18 years) in South Australia in December 2021. It seems that the NDDA only found about 1 in 5 autistic students … and didn’t notice that there was an issue with the result.

* Figure 5 in the Services and supports used by people with disability and mental illness/psychological distress in Victoria test case seems very much at odds with other reports of the mental health of Autistic people.
* The other two NDDA test cases do not even mention Autistic people.

Clearly, the NDDA will need to do far better than this if it is to have any prospect of supporting a National Autism Strategy.

The NDDA will need financial and economic data in addition to the data that it is already planning to incorporate.

The NDIS could become a key element of Australia’s National Autism Strategy as it is well funded compared to overseas attempts provide equitable outcomes for Autistic citizens, but:

* the NDIS needs to recognise ASD as a distinct disability that needs ASD-specific responses; and
* major commitment is needed beyond the boundaries of the NDIS8.

The 2021-22 Federal Budget provided mental health funding for autistic people.

[https://archive.budget.gov.au/2021-22/bp2/download/bp2_2021-22.pdf](https://archive.budget.gov.au/2021-22/bp2/download/bp2_2021-22.pdf)

Supporting the Vulnerable

* ...
* $11.1 million over two years from 2021-22 to improve outcomes for people with complex mental health needs including people with cognitive disabilities and autism spectrum disorder.

The autism sector awaits the outcomes.

### State level plans & strategies

Several state level plans and activities are discussed below.

* Victoria’s Autism Plan
* South Australia’s Autism Strategy
* The ACT’s response to its Health Ministers review request.

Other states have shown interests in autism, but time limits A4’s ability to report on these here.

8 The NDIS cannot be “the only lifeboat in the ocean” – see [https://www.abc.net.au/news/2023-05-10/ndis-eligibility-disability-services-bill-shorten/102326822](https://www.abc.net.au/news/2023-05-10/ndis-eligibility-disability-services-bill-shorten/102326822) and many other reports.

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## Victoria’s Autism Plan

The Victoria’s former Department of Health and Human Services has a webpage for the Victorian Autism Plan. It says:

The Victorian Government is developing an autism plan to better support people with autism, which will include short, medium and long-term actions over five years.

The plan is a key commitment from Victoria’s response to the Parliamentary Inquiry into Services for People with Autism Spectrum Disorder, which made 101 recommendations to improve supports, services and inclusion for people with autism.

The Inquiry into services for people with Autism Spectrum Disorder Final Report (June 2017) says (p252):

It is also anticipated that not all children who access early intervention services under the NDIS will require a funded package once they are adults. This is in line with emerging research on early intervention, which affirms that it can reduce ongoing health care, social and economic costs associated with ASD, and improve an individual’s ability to participate in the mainstream. In terms of national guidelines for early childhood intervention, the early childhood intervention sector has produced its own set of national guidelines following industry and workshop consultations.
Recent research commissioned by the NDIS has critically evaluated the effectiveness of different therapies for children with ASD.

> 939 See Early Childhood Intervention Australia, ‘National Guidelines – Best Practice in Early Childhood Intervention’, ECIA, accessed 12 April 2017, <www.ecia.org.au/resources/best-practice-guidelines>
> 
> 940 J Roberts and K Williams, Autism spectrum disorder: Evidence-based/evidence-informed good practice for supports provided to preschool children, their families and carers, 2016, accessed 27 April 2017, <www.ndis.gov.au/html/sites/default/files/Early%20Intervention%20for%20Autism%20research %20report.pdf>

Note that the ECIA Guidelines referenced above have limited relevance for autistic children.
The only mention of autism in the Guidelines says:

The role of direct intervention by specific professionals
In addition to the body of evidence for the ECI sector there are also other bodies of evidence that suggest specific intervention for children with specific needs, such as autism spectrum disorder that lead to improvement in childhood development and skill development.

While the Guidelines mention “other bodies of evidence” for autism, they do not reference any specific evidence. It is not clear what evidence they mean.

> 9 Now available at https://www.eciavic.org.au/documents/item/1419
> 10 The link to this document is now https://www.ndis.gov.au/media/863/download

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## FOI 24/25-1567

Basically, this means that the ECIA Guidelines are largely irrelevant for autistic children.

In practice, all the NDIA's internal reviews of NDIS Plans relating to early intervention for young autistic NDIS participants, that A4 has seen, show that the NDIA's internal reviewers referred to the ECIA Guidelines but ignored the autism-specific “research commissioned by the NDIS [that] critically evaluated the effectiveness of different therapies for children with ASD”.

In matters before the AAT, the NDIA contests vigorously<sup>11</sup> the “other bodies of evidence” for autism and the advice Roberts & Williams (2016) provided to the NDIA.

What the NDIS offers for autistic children is not what the Victorian government assumes. The Vic. government really needs to check up on their expectation; it should not rely on assumptions.

> Lesson 9. Assumption is the father of the greatest f**k-ups.

A recent commentary, *Opportunity Autism: Next Steps for Victorian Autism Policy* (June 2022), does not indicate much progress. Most of the reporting relies on data collected in 2018 (which is a long time ago in relation to autism data). It provides little or no evidence of progress.

Perhaps a major part of the problem is the lack of whole-of-government commitment. Autism is not mentioned in Victorian budgets; this is a sign that Victorian treasury and finance departments are not on board with Victoria’s Autism Plan. There is no discernible financial commitment nor reporting requirement from the plan.

These are the same issues as are identified above in relation to strategies and plans from overseas.

## South Australia’s Autism Strategy

South Australia’s government has embarked on creating its first Autism Strategy and Charter.

The initial focus seems to be in diagnosis and education.

In the past, South Australia appeared to have one of the most comprehensive and reliable diagnostic services in the country.

More recently, the NDDA used SA data for one of its NDDA Pilot - South Australian Test Case: Education to Employment test case. A4 does not consider the pilot test case to have been a success in its data reporting in this instance (see above). It seems A4 disagrees with the NDDA team on this.

The webpage for SA’s Autism Strategy (see [https://autismstrategy.sa.gov.au/](https://autismstrategy.sa.gov.au/)) appears to be a pseudonym for a page on the more generic disability site (see [https://inclusive.sa.gov.au/have-your-say/autismstrategy](https://inclusive.sa.gov.au/have-your-say/autismstrategy)). SA’s autism sector needs to be wary of this approach; the needs of Autistic people usually

<sup>11</sup> so far, without success at hearing in matters relating to preschool-age children.

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## ACT – autism abandoned.

In 2018, the ACT Health Minister asked his department to review health services, including mental health services, for people with either (or both) intellectual disability or autism.

The record shows that the ACT Health Department responded by setting up a Mental Health Services for People with Intellectual Disability Working Group. It ignored autism.

It seems that ACT Health, like much of Australia’s health service sector, believed that

> “The majority of people identified with autism spectrum disorder also have an intellectual disability (about 70%), group advised it would be appropriate to address these groups within this strategy.”

It seems that this misbelief justifies ACT Heath’s ignoring the distinct autism-related need of Autistic Canberrans; they only recognised intellectual disability.

Subsequent discussion with officials and politicians delivered various promises and commitments … but no progress. No doubt COVID-19 is their excuse.

The ACT has a poor track record in disability-related issues. The ACT government’s response to its Board of Inquiry into Disability Services (the Gallop Report) was to defend its officials, who were described as “unreliable witnesses”, instead of responding properly to the Inquiry findings. There is a strong lesson in that experience.

## Lessons from Intellectual Disability

Repeatedly, Australian governments had been told about especially poor health, well-being, and life outcomes for Australians with Intellectual Disability. The Burdekin Report (1993)¹² is an example: it described “dual diagnosis”¹³ as intellectual disability and mental illness.

Various services were set up in response to the Burdekin Report, but it is hard to find them now. The processes of government and bureaucracy has left most of the services created in response to the Burdekin Report in ruins or barely in existence.

Apparently, neither the Victorian Dual Disability Service nor the ACT Mental Health Service for People with Intellectual Disability had even the resources to mention COVID on their webpages.

¹² B. Burdekin (1993), National inquiry into the human rights of people with mental illness, https://humanrights.gov.au/about/news/speeches/burdekin-national-inquiry
¹³ More recently, the term “dual disability” seems to have emerged.

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## Lesson 10
An effective National Autism Strategy needs protection from the processes of government and bureaucracy; it needs to be resilient.

The ACT service on its webpages says:
> Our Mental Health Service for People with Intellectual Disability provides assessment and treatment to people with a known or suspected intellectual disability and a known or suspected mental illness/disorder, including Autism Spectrum Disorder.
Autism is a neurological disorder/difference, not a mental illness. Some people have autism (with/without ID) and mental illness.
Now that most Autistic people do not have intellectual disability, this leaves autistic people without ID but with mental illness unable to access ACT mental health services.
Building services that cater for specific combinations of mental illness and disability simply will not meet the needs. Some combinations of co-occurrent health and disability conditions will always be left out in that approach.

## Lesson 11
Australia’s health system needs to be inclusive of AwD.
> Health services should observe the education sector’s Inclusion attempts and learn from their successes (and avoid their failures).
> Successful health services for AwD will also need substantially improved autism-specific expertise.
Surely, no one is surprised that the part of the mental health system that is meant to support people with co-occurring mental illness and intellectual disability is under-resourced when the mental health sector generally is struggling.

## General Lessons
To be successful, a National Autism Strategy needs to be modelled on other successful government strategies and programs. Unfortunately, there are relatively few models for success in the disability sector. We need to look elsewhere.

## What doesn’t work
In recent time, government policy is to operate as close to the brink of disaster as possible. Recently, this seems to have been tested by stressors like COVID-19 and climate change. Areas of government like disability, aged care, veteran’s affairs, land & water management, education, early childhood, employment, health (especially mental health), transport, energy, etc. struggle.
Government in Australia usually asks for solutions in its consultations. Politicians and government officials are keen to rush to implement “solutions” before they properly understand the problem.

13
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Many people suggest that we need more data about autism (or disability more generally) to properly understand the problem.

A4 argues that before getting more data, government needs to show that it can use properly the data it already has. The ABS SDAC data has described outcomes for Autistic Australians since 2006. However, governments (state/territory and federal), the Productivity Commission and the NDIA ignored these data that showed:

*   autism numbers increasing substantially,
*   especially poor education and employment outcomes.

The NDDA did not validate the results that it got in its pilot test cases.

Lesson 12. Ignoring data and other evidence does not work.

What works

A4 suggests that we need to look beyond the disability sector for examples of successful and relevant strategies. As indicated above, successful strategies rely on evidence.

Understanding of a problem depends on good data. So far, the NDIA has failed abysmally in its understanding of autism which is the reason for many of its current problems.

The NDDA didn’t understand the problem sufficiently and didn’t check its results.

Creating an effective NAS for Australia will depend on developing and maintaining real autism expertise to create and sustain the NAS.

An effective strategy:

*   has both an Inclusive approach that integrates services and support within the mainstream whenever that can be made to work successfully.
*   will recognise autism as a distinct neurology that needs specific services that are different from other disability services. There must be a clear understanding that autism is not the same as, or a subtype of, intellectual disability … though the two often co-occur, and need to be addressed in combination.
*   is resilient and sustained through entrenched commitment with strong monitoring, reporting, and accountability for positive outcomes.

The National Agreement on Closing the Gap, although it has yet to solve the problems, it appears to have the resilience and accountability needed to deliver outcomes in the long term. Notably, it has annual reporting to parliament with consequent annual debate.

Australia’s NAS could entrench parliamentary reporting World Autism Day (2nd April each year).

Key indicators of success will include improved well-being and employment outcomes for Autistic Australians. Well-being outcomes stand on health and

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## Conclusion

The development of a National Autism Strategy, done well, is a major task.

The above material is intended as initial food for thought.

An effective National Autism Strategy needs:

*   Whole-of-government commitment and Funding
*   Comprehensive coverage of all the challenges relating to all Autistic Australians.
*   Longevity and resilience of outcomes.

A4 is available to comment further on the issues raised above, or on anything we missed in this quick introductory scan.

On behalf of the autism sector, A4 wishes the Oversight Committee and its Working Groups every success in this endeavour.

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## Annex A. List of Lessons Learnt

Lesson 1. To be effective, a National Autism Strategy must recognise and respect the whole autism spectrum; it must deliver a spectrum of strategy that matches the heterogeneous Autistic population it aims to support.

Lesson 2. Autism is a problem elsewhere, not just in Australia.

Lesson 3. Others have not solved the problems yet … it’s difficult (a wicked problem, no easy answers). This means that expecting “a complete solution” is unreasonable, unachievable … but substantially better outcomes for everyone are achievable.

Lesson 4. Experience suggests outcomes are better realised when autism is better defined/understood, and the rights of Autistic people are recognised and respected.

Lesson 5. The autism spectrum needs a spectrum of responses, strategies, policies, and programs across most areas of government to achieve equitable outcomes for Autistic people.

Lesson 6. Better outcomes need serious effort and money.

Lesson 7. An effective National Autism Strategy needs to be:

  a. Resilient, robust and effective – safe and protected from bureaucratic erosion.
  b. Reviewed formally and regularly (at least bi-annually)

Lesson 8. Assumption is the father of the greatest f**k-ups.

Lesson 9. An effective National Autism Strategy needs protection from the processes of government and bureaucracy; it needs to be resilient.

Lesson 10. Australia’s health system needs to be inclusive of AwD. Health services should observe the education sector’s Inclusion attempts and learn from their successes (and avoid their failures). Successful health services for AwD will also need substantially improved autism-specific expertise.

Lesson 11. Ignoring data and other evidence does not work.

--- 

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## Annex B.A4’s suggestion on terminology

A proposal from A4 on language around autism

Terminology issues arising in the autism sector include:

*   identity-first vs person-first language;
*   the disorder vs condition debate.

Paul Micallef explains the identity- vs person-first language issue well at [https://www.youtube.com/watch?v=RpRhgfRfXBM](https://www.youtube.com/watch?v=RpRhgfRfXBM). As we understand it, more autistic people who express an opinion on the issue indicate that they prefer identity-first language. They prefer “autistic person” over “person with autism”<sup>14</sup>. Preferences vary, and the individual preference and context should be used as guidance.

Perhaps the wise approach is to use personal preference when known, otherwise assume identity-first is more often preferred.

The main point of this note is the disorder vs condition debate.

Current use of the term “autism” is unclear: some people mean and Autism Spectrum Disorder (ASD), some mean Autism Spectrum Condition (ASC), and some are less specific as to what they mean. Briefly, the origin and meaning of some terms are:

*   Autism Spectrum Disorder (ASD) – is the name used in the DSM-5 and the ICD-11. These are a medical model diagnostic with diagnostic criteria … that include “needs support” in relation to parts A & B of the diagnosis.
*   Autism Spectrum Condition (ASC) – substituting “condition” (for “disorder”) thereby indicating that the autism spectrum broader than just “disorder”. Wikipedia says some people “see autism as part of neurodiversity, the natural diversity in human thinking and experience, with strengths, differences, and weaknesses. From this point of view, autistic people often still have a disability, but need to be accommodated, rather than cured. This perspective has led to significant controversy among those who are autistic alongside advocates, practitioners, and charities.”

Regrettably, the controversy is increasingly divisive: as discussed in the Washington Post and elsewhere.

> Over the past two decades, as the autism spectrum has broadened to include those with milder traits, this fight has flared into an all-out war that plays out online and in person.

Many autistic people prefer the term Autism Spectrum Condition (ASC) over Autism Spectrum Disorder (ASD). They prefer “condition” rather than “disorder”. S. Baron-Cohen said (14/5/2015) that “the term ‘disorder’ (not just

<sup>14</sup> I’m told that many deaf people feel very much the same way.

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for autism but for any atypical behaviour), but that word may be a legacy
from an earlier period in the history of psychiatry”¹⁵. He says that:
   • “'condition' is a less hard-hitting and more respectful concept”; and
   • “whether we opt for ASD vs. ASC, it should not affect insurance cover”.

Some people say that they are autistic but, rather than needing support, they
need “acceptance”, “accommodation”, and/or “awareness”. They can function
effectively in inclusive environments with “accommodations” and respect for
(appreciation of) their difference. They regard their autism as a condition
that is just part of their nature, not a disorder.
A4 is also aware that being functional certainly does not require/expect being
normal (whatever people think that means). Most autistic people function
differently in many respects without being disordered or dysfunctional. The
emerging terms, neurodiversity-affirming, neuro-affirming, or neuro-
nurturing can be used to label this approach.
A4 accepts the argument that “autism” is broader than “disorder”. For some
autistic people, perceptions of “disorder” can be due more to unsatisfactory,
inappropriate, unsupportive, or disorder environments than to the person’s
differences.
On the other hand, some advocates argue that adopting ASC terminology
hides the impact of severe or profound autism. They suggest that ASC omits
the extremely serious impact of autism on those who most severely affected.
The challenge with using the broader term, ASC, is that there are no
accepted criteria as the basis for diagnosis.
At the same time, A4 recognises that some autistic people need help, even
therapy, to learn to function effectively in their environments.
Some autistic people need supports.
Whitehouse discusses the issue of creating/introducing a “profound autism”
term here. A recent article cites some data. You can google “profound autism”
to see numerous articles on the subject.
A4’s suggestion is that both terms, Autism Spectrum Condition (ASC) and
Autism Spectrum Disorder (ASD), be used intentionally to describe all or
part of the autism spectrum respectively.
A4’s suggests that, rather than replace the ASD term with ASC, we use ASC
more broadly to include people whose condition is mitigated through
awareness, acceptance and accommodation, and restrict ASD terminology to
situations where disability support is essential, where disability cannot be
mitigated through external (social and environmental) accommodations.
Both terms are required.

¹⁵ [https://insar.confex.com/imfar/2015/webprogram/Paper19861.html](https://insar.confex.com/imfar/2015/webprogram/Paper19861.html)

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## FOI 24/25-1567

And the word “autism” or the phrase “autism spectrum” mean ASC; they
have the less specific, less medicalised, meaning. Basically, “disorder” relates
essentially to “needs support”<sup>16</sup>.
A4 proposes that through using both terms, ASD and ASC, we avoid
wanting/needing to introduce the term “profound autism”. This is like
avoiding the term high-functioning autism.
The proposal works best if we understand that there are no hard borders
between ASC & ASD, or between ASC & neurodivergent.

Bob Buckley, A4 Co-convenor
1/6/2023

<sup>16</sup> though the boundaries for that are also unclear.

                               
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## Annex C. Senate Autism Review Recommendations

The Senate Select Committee into Autism handed down its report in March 2022. It made 81 recommendations to be considered for the implementation of a National Autism Strategy. The NAS Oversight Council and Working Groups will co-design and develop the strategy, with working groups in four key areas.

* Social inclusion
* Economic inclusion
* Diagnosis, supports and services
* Health and Mental Health

Members of the Oversight Committee and Working Groups are comprised of representatives of the autism community, researchers, and government representatives. The recommendations from the Senate Select Committee into Autism will be distributed between the working groups to compile data and other information into the four areas. The recommendations from the autism inquiry are listed below and have been dispersed amongst the working group topics below in the table. Green represents a recommendation that spans across all 4 working groups, orange across 3 working groups, yellow across 2 working groups and no colour across 1 working group. Responses to recommendations relevant to multiple working groups will need coordination; they need more attention from the Oversight Committee.

| Social inclusion | Economic inclusion | Diagnosis, supports and services | Health |
|---|---|---|---|
| X | X | X | X |
| X |  |  |  |
|  |  | X |  |
|  | X |  | X |
| X | X | X |  |
|  |  | X |  |
|  |  |  | X |
|  |  | X |  |
| X |  |  |  |
|  | X |  |  |
| X |  | X |  |
|  |  |  | X |
| X |  |  |  |

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# FOL 24/25-1567

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FOIL 24/25-1567

ou

tt
dh:

th il :

22
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## Education and Justice Issues

Education and justice issues are major topics deserving specific attention.
These topics were not assigned to specific working groups. The table below suggests which of the recommendations may relate to education or justice.

### Social inclusion and Diagnosis, supports and services

| Education | Justice |
|---|---|
| 14 | xX |
| 39 |  |
| 46 |  |
| 47 |  |
| 48 |  |
| 49 |  |
| 50 |  |
| 51 |  |
| 52 |  |
| 53 |  |
| 54 |  |
| 55 |  |
| 56 |  |
| 73 |  |
| 74 | xX |
| 75 | xX |
| 76 |  |
| 77 |  |
| 78 |  |
| 81 | xX |

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## Annex D. Autism in the NDS 2010-20

NDS 2010-20
See
https://www.dss.gov.au/sites/default/files/documents/05_2012/national_disability_strategy_2010_2020.pdf

### 5 Learning and Skills

…

#### POLICY DIRECTION 4

Improve pathways for students with disability from school to further education, employment and lifelong learning.

…

##### Current commitments 2010

Commonwealth, State and Territory governments are committed to improving early intervention and support for children with autism. The Commonwealth helping Children with Autism initiative ($190 million) includes:

*   establishing eight Autism Specific Early Learning Centres across Australia
*   funding for early intervention therapies
*   PlayConnect Playgroups (autism-specific playgroups)
*   Early Days family workshops
*   professional development for teachers, school leaders and other school staff
*   workshops and information sessions for parents and carers.

New Medicare items are also available for children aged under 13 years (for diagnosis and treatment planning) and under 15 years (for treatment).

A number of States and Territories have introduced autism plans designed to help children with autism and their families get the specialised support they need, and to make the community more welcoming and inclusive. Plans include measures designed to strengthen the capacity of the workforce to respond to children with autism, provide greater support to children and families, especially at times of transition, improve access to educational opportunities, and improve our understanding of autism.

…

                               
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## 6 Health and wellbeing

…

**POLICY DIRECTION 2**
timely, comprehensive and effective prevention and early intervention health services for people with disability.

…

Intensive educational and behavioural interventions have produced positive outcomes for children with autism (Commonwealth Department of health and Ageing, 2006).<sup>17</sup>

…

**Current commitments 2010**

*   Improved access to health services for people with disability through new Medicare Benefits Schedule items including Intellectual Disability health Check and Chronic Disease management; and new items under the helping Children with Autism initiative and the Better Access initiative for mental health services.

ADS 2021-31

**Policy Priority 4:**

The built and natural environment is accessible

…

> “[U]niversal design and built environment accessibility often needs to go beyond access for people with physical impairments and should include design for other issues such as hearing impairment, cognitive impairment, psychosocial disability, or autism” (Senate Community Affairs References Committee 2017)

<sup>17</sup> M Prior & J Roberts, *Early intervention for Children with Autism Spectrum Disorders: guidelines for best practice*, Department of health and Ageing – Commonwealth Government, 2006, p. 2
Note: this document is no longer available on the [https://health.gov.au](https://health.gov.au) website. The full report and the associated booklet can be downloaded from [https://a4.org.au/node/965](https://a4.org.au/node/965)

                               
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## Autism in Australia

Data and Its Sources

> Autism Aspergers Advocacy Australia (A4)

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## Table of Contents

Disability in Australia ............................................................................................................................... 4

Autism Spectrum Disorder in Australia ................................................................................................... 5

  ASD: diagnosis rate vs prevalence ....................................................................................................... 6

Autism in the ABS SDAC .......................................................................................................................... 7

  Education and employment .............................................................................................................. 13

  AIHW autism report .......................................................................................................................... 13

Autism in DSS Carer Allowance (child) data .......................................................................................... 14

  ASD and Carer Allowance history ...................................................................................................... 20

  ASD data from the ABS SDAC and Carer Allowance (child) ............................................................... 20

ASD in Australia's states and territories ................................................................................................ 24

Autistic women and girls ....................................................................................................................... 26

Autistic NDIS participants ...................................................................................................................... 28

Autism prevalence research and commentary ..................................................................................... 31

   Australia ............................................................................................................................................ 32

  Overseas ............................................................................................................................................ 32

Gaps in understanding autism .............................................................................................................. 33

Conclusions ........................................................................................................................................... 34

                                        1

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## Figures

Figure 1. ABS SDAC disability estimates: Australians with disability - 2015 ........................................... 4

Figure 2. ABS SDAC estimates: Percentage of Australians with disability - 2015 .................................... 4

Figure 3. Number of Autistic Australians ................................................................................................ 9

Figure 4. Autistic Australians age breakdown ....................................................................................... 10

Figure 5. Diagnosis rates for Autistic Australians .................................................................................. 11

Figure 6. Growth rate (rate of increase) for Autistic Australians .......................................................... 12

Figure 7. Increasing autism diagnosis rates by age group ..................................................................... 12

Figure 8. Autistic children aged 0-15 years registered for Carer Allowance (child) .............................. 16

Figure 9. Autistic children aged 0-15 years registered for Carer Allowance (child) .............................. 16

Figure 10. Autistic children aged 0-15 years registered for Carer Allowance (child) ............................ 17

Figure 11. Age breakdown .................................................................................................................... 18

Figure 12. Increasing numbers of autistic children — Carer Allowance (child). ................................... 18

Figure 13. Diagnosis rate (percentage) by age for year of birth 2003................................................... 19

Figure 14. Diagnosis rate (percentage) by age for year of birth............................................................ 19

Figure 15. Reported diagnosis rates by age from ABS SDAC and Carer Allowance (child) in 2015 ....... 20

Figure 16. ABS SDAC and Carer Allowance (child) — autistic Australians aged 5-14 years .................. 22

Figure 17. ABS SDAC and Carer Allowance (child) — ASD diagnosis rates for Australians aged 5-14
years in 2015 ......................................................................................................................................... 22

Figure 18. ABS SDAC and Carer Allowance (child) — annual growth.................................................... 23

Figure 19. Percent of autistic Australians in each state/territory.......................................................... 24

Figure 20. Percent autistic Australian children receiving Carer Allowance (child). ............................... 25

Figure 21. Percent of NDIS participants with primary disorder/condition is ASD................................. 26

Figure 22. Percent Autistic female Australians – ABS SDAC vs Carer Allowance (child) by year. .......... 27

Figure 23. Percent Autistic females Australians by state - 2018. .......................................................... 27

Figure 24. Percent Autistic females Australians by state and age band. ............................................... 28

Figure 25. NDIS participants - primary disability - December 2022 ...................................................... 29

Figure 26. NDIS Plan budgets by age (years) December 2022 .............................................................. 30

Figure 27. NDIS participant numbers by age (years), December 2022 ................................................. 30

Figure 28. Autistic NDIS participants by state, December 2022 ........................................................... 31

                                        2

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## Tables

Table 1. ABS SDAC summary information ............................................................................................... 8

Table 2. Autistic Australians by age (thousands) ..................................................................................... 9

Table 3. Autistic Australians by age (percentage of population) ........................................................... 11

Table 4. Summary data from Carer Allowance (child) ........................................................................... 15

Table 5. ABS SDAC rates vs Carer Allowance (child) data ...................................................................... 21

Table 6. ABS SDAC 2015 rough proportions of Autistic Australians by state/territory ......................... 24

Table 7. NDIS participants - primary disability - December 2022 ......................................................... 29

Table 8. Participant numbers vs Plan Budget ........................................................................................ 30

                                        

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## Disability in Australia

The Australian Bureau of Statistics (ABS) conducts an occasional Survey of Disability, Ageing and Carers.

> [Image not converted to Markdown -- "Figure 1. ABS SDAC disability estimates: Australians with disability - 2015" -- check the source PDF page for the actual content]

The number of people with disability is not evenly distributed. The age group with the most disabled people is the 65-69 year old age band. The number of people aged 60-69 years with a disability is double the number age 40-45 years.

No one has fully explained the drop in numbers from 10-14 year to 15-19 year age group. Part of this decrease is likely due to the change from parent-reporting to self-reporting in the survey data collection: some young people reject being labelled as "with disability".

> [Image not converted to Markdown -- "Figure 2. ABS SDAC estimates: Percentage of Australians with disability - 2015" -- check the source PDF page for the actual content]

                                        

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## FOI 24/25-1567

Older people are more likely to acquire or develop disability.

It is misleading to present an average disability rate for disability in general across all ages.

Some disability types have later onset (e.g., dementia, MS, sensory impairment, spinal injury, ...) and
some are associated with reduced lifespan. Some disability types, such as ASD and intellectual
disability, are usually life-long.

This variability means the disability sector is very diverse. It is unwise and inappropriate to generalise
about people with disability.

## Autism Spectrum Disorder in Australia

Autism Aspergers Advocacy Australia (A4) reviews and analyses data from various sources hoping to
understand the nature and experience of autistic Australian and their associates. A4's focus is
national advocacy, so its focus is on national data.

A4's main sources of national data related to autistic Australians are:

- The Australian Bureau of Statistics (ABS), especially its Survey of Disability, Ageing and Carers
  (SDAC) that it conducts occasionally (every 3 years since 2009)
- annual summaries of autistic children (aged 0-15 years) receiving Carer Allowance (child)
  from the Department of Social Security (DSS, formerly FaHCS and FaCHSIA)
- quarterly datasets from the NDIS (since full-rollout in 2019, but not all Autistic Australians).

A4 appreciates the access it has to these data. Without these data sources, understanding of ASD in
Australia would be far more limited.

Other sources of data about autistic Australians include:

- Medicare
- HCWA data
- NDA and NMDS data from AIHW
- NDDA (in development)

The following reports on Australian data relating to "autism", Pervasive Developmental Disorders (up
to 2013) and Autism Spectrum Disorder (since 2013).

The DSM-IV, when it was published in 1994, indicated that the prevalence of Autistic Disorder was 4
per 10,000. It did not provide prevalence estimates for Asperger's Disorder or PDD-NOS. In the
1980s, prevalence for the wider autism spectrum was estimates to be around 10 per 10,000 (see
here). The expectation was that 2 in 5 had Autistic Disorder and the rest (3 in 5) had Asperger's
disorder or PDD-NOS.

Australia's population in June 1995 was 18,100,000 so the expected number of autistic Australian
(0.1%) was 18,100; about 7,240 with Autistic Disorder. Diagnosis of PDDs increased substantially
through the 90s. Even so, by 1998 the ABS estimated that there were just 13,200 autistic Australians.
Australia had low diagnosis rate for Asperger's Disorder and diagnosis rates for PDD-NOS were largely
unreported.

Despite increases in autism diagnosis rates starting in the 90s, governments in Australia failed to
increase services and supports for the growing number of autistic people. From the perspective of an
ausic individual, existing services were increasingly diluted. The lack of essential service for Autistic
Australian became chronic.

Australian Governments persist with their unsupportive attitude to ASD today. For example, the
planning for the NDIS did not recognise that ASD diagnoses were increasing. Senior NDIA officials

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were delighted to hear that the increase in autism diagnoses from 2012 to 2015, for the first time,
comprised more autistic people with mild or moderate disability than those with severe or profound
disability. They do not appreciate (discernibly):

1. that the needs of the increasing numbers of autistic people with severe or profound
disability still need to be addressed;
2. most autistic people with so-called "mild or moderate ASD" also needs acceptance, services
and supports;
3. autistic people have poor employment and participation prospects even if their autism is
considered mild or moderate;
4. there should always have been more autistic people with mild or moderate disability —
there may be substantial and persistent under-diagnosis of less severe ASD; and
5. time has shown much greater levels of autism under-diagnosis for women.

## ASD: diagnosis rate vs prevalence

Most reporting of ASD rates/levels in populations are based on number of diagnoses. We can
observe (count) the number of diagnoses but determining true prevalence is difficult.

ASD prevalence is the proportion of people who have ASD. Published data is always based on some
process for determining who is autistic and who isn't. Differences in interpretation of autism
diagnostic criteria account for some of the difference in reporting.

The challenge is to understand and explain the observed increasing ASD diagnosis rates and how
they relate to ASD prevalence.

Generally, the expectation is that diagnosis rates are similar to prevalence. Any difference between
the two is due to a combination of small numbers of misdiagnosis and missed diagnoses. But the
substantial increases in diagnosis rates for ASD tell a different story.

Typically, researchers blame changing criteria for at least part of the increase — but the diagnostic
criteria for ASD have changed relatively little. In particular, the criteria did not change to allow easier
diagnosis from 1994 when the DSM-IV was published to 2013 when the DSM-5 was published. The
changes from the DSM-III to the DSM-IV, then to the DSM-5 all tightened autism diagnosis criteria so
changes to the criteria do not contribute to increasing autism diagnoses, those changes were meant
to reduce/limit increasing autism diagnosis rates.

Generally, people say "changing criteria" when they actually mean "broader" or "better"
interpretation of (unchanged) diagnostic criteria.

Differences between "diagnosis rate" and "prevalence" for ASD are due to a combination of:

* undiagnosed ASD - some people simply don't seek a diagnosis, other are given other
diagnoses.
* misdiagnosed (or over-diagnosed) ASD - when a person is diagnosed incorrectly with ASD
* data inadequacy.

An autistic person may be undiagnosed (without an ASD diagnosis) for a range of reasons:

* they may be young and are yet to be diagnosed. Various datasets indicate that the ASD
diagnosis rate in young children is well below the rate observed in older children.
* a child may be waiting for an ASD assessment — especially when waiting for government
diagnostic services that mostly have unacceptably long waiting list.
* people associated with an autistic child may not be aware of ASD nor of its signs.
* some families cannot afford to pay for an ASD assessment — the Medicare item funds only a
fraction of the cost of a private assessment.

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* for adults, diagnosis is often more complex or difficult to obtain.

Some people are misdiagnosed with ASD when they are not autistic. Suggested reasons are:

* some clinicians may mis-interpret symptoms and diagnose ASD incorrectly
* there are claims that some parents (or schools) demand an ASD diagnosis
* there are some claims that some clinicians diagnose ASD so a child can access services they
need and cannot be accessed without the diagnosis
* data collection should be wary of self-diagnosis ... also must ask the right question.

Many autistic people have comorbid conditions: other diagnoses may be recorded but a comorbid
ASD diagnosis may not be recorded/registered ... either at time of diagnosis or during subsequent
data collection. For example, systems that ask for a primary disability may not record other
diagnoses.

The available data suggests that there are substantial levels of undiagnosed ASD among Australian
adults. The ABS estimated there were 6,200 autistic Australians aged 20 years or over in 2003. In
2012, they estimated 12,900 autistic adults and 14,500 in 2015 aged 30 years of older. ABS SDAC
data from 2018 estimate ASD diagnosis rates for autistic adults (25+ years of age) in Australia start at
0.8% and drop substantially from there.

## Other prevalence papers

Williams K , MacDermott S , Ridley G , Glasson EJ , Wray JA: The prevalence of autism in Australia:
can it be established from existing data? J Paediatr Child Health 2008; 44:504–510
https://onlinelibrary.wiley.com/doi/10.1111/j.1440-1754.2008.01331.x

Fombonne E: Epidemiological surveys of autism and other pervasive developmental disorders: an
update. J Autism Dev Disord 2003; 33:365–382
https://link.springer.com/article/10.1023/A:1025054610557

Fombonne E: Epidemiology of pervasive developmental disorders. Pediatr Res 2009; 65:591–598
https://www.nature.com/articles/pr2009131

Prevalence of Autism Spectrum Disorders in a Total Population Sample, Young Shin Kim, M.D., Ph.D.,
Bennett L. Leventhal , M.D., Yun-Joo Koh, Ph.D., Eric Fombonne , M.D., et. al.
https://doi.org/10.1176/appi.ajp.2011.10101532

## Autism in the ABS SDAC

The Australian Bureau of Statistics (ABS) collects data including population data and data for its
Survey of Disability, Ageing and Carers (SDAC). The ABS uses its SDAC data to estimate the number of
autistic Australian. Note that when smaller numbers reported in these are estimates have significant
estimation errors.

In 2004, Bob Buckley (A4 Convenor) asked the ABS for estimates of the number of autistic Australians
from the 1998 and 2003 SDAC data. He published1 the estimates that the ABS provided.

At the time of publication of the DSM-IV in 1994, autism prevalence was generally regarded as being
around 1 per 1,000 (or 10 per 10,000). In June 1995, Australia's population was 18.1 million so the
expected number of Autistic Australians was 18,100. The ABS SDAC estimated in 1998 that 13,200
Australians were autistic or 72.9% of the expected number, so from the outset autism was
substantially under-diagnosed in Australia.

1 Buckley, B, Autism/ASD diagnosis rates in Australia, Proceedings of 2004 Australian Biennial Autism
Conference, Autism Aspergers ACT, Canberra, Australia (see https://a4.org.au/node/918 ).

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Since the ABS’s 2009 SDAC data collection, the ABS produced its own reports on "Autism in
Australia".

* 44280.0 Autism in Australia, 2009
* 4428.0 - Autism in Australia, 2012
* 4430.0 - Disability, Ageing and Carers, Australia: Summary of Findings, 2015 - "Autism in
Australia" is part of the larger SDAC report
* 4430.0 Autism in Australia, 2018 - part of the Disability. Ageing and Carers Australia findings.

Each report has an associated spreadsheet that provides more detail than is shown in the reports.

The ABS SDAC 2018 estimates that:

* 205,200 Australians were autistic2 — a 25.1% increase on the 2015 estimate.
* 83% of autistic people were aged under 25 years3.
* 22.7% of autistic people were female, a female to male (other?) ratio4 over 1:4.
* 68.9% of autistic people have severe or profound disability (core activity limitation).

The ABS released a series of estimates (and associated risk of error) from its survey data collections
showing statistical aspects of Australia's autistic population.

| year | 1998 | 2003 | 2009 | 2012 | 2015 | 2018 |
| --- | --- | --- | --- | --- | --- | --- |
| autistic Australians '000s | 13.2 | 30.4 | 64.6 | 115.4 | 164.0 | 205.2 |
| increase | | 130.0% | 112.5% | 78.6% | 42.1% | 25.1% |
| annual increase | | 18.6% | 13.4% | 21.34% | 12.43% | 7.75% |
| severe or profound disability | | 87% | 74% | 73% | 64.8% | 68.9% |
| 0-14 years old | 80.3% | 66.4% | 65.2% | 56.7% | 53.4% | 60.0% |
| female | 16.8% | 17.8% | 21.9% | 19.6% | 22.7% |

Table 1. ABS SDAC summary information

The ABS SDAC dataset allows a range of analyses.

The increases in ASD diagnosis rates are remarkably high. The data show a greater than 15-fold
increase is autism diagnoses from 1998 to 2018. Other major disability types are stable or
decreasing.

Some of the increase in numbers is due to Australia's population increase.

2 Citing averages for disability ASD is misleading as diagnosis rates for ASD vary substantially by age; the
average diagnosis rate across all ages is not meaningful.

3 While research indicates life expectancy for autistic people is reduced, reduced life expectancy is not sufficient
to explain low numbers of autistic adults. Apparently, Australia has significant under-diagnosis of Autistic
adults.

4 There is increasing recognition that gender is a more complex issue in the Autistic sector.

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Figure 3. Number of Autistic Australians

Data from 2003 show 87% of autistic Australians had severe and profound disability compared to
68.9% in 2018. This suggests chronic under-diagnosed of mild and moderate ASD in Australia may be
moving slowly in the right direction.

The ABS SDAC provides estimates separated in to 5-year age bands. The ABS varies the bands
provided between the survey years to allow for higher error rates when numbers are small. Values in
italics were derived from the data provided.

| | 1998 | 2003 | 2009 | 2012 | 2015 | 2018 |
| --- | --- | --- | --- | --- | --- | --- |
| 0-4 years | 1.0 | 1.2 | 3.5 | 6.0 | 6.2 | 10.8 |
| 5-9 years | 10.5 | 8.2 | 19.4 | 33.0 | 41.9 | 49.0 |
| 10-14 years | | 10.8 | 19.2 | 26.4 | 39.4 | 50.3 |
| 15-19 years | 1.7 | 3.9 | 11.4 | 21.8 | 26.4 | 40.2 |
| 20-24 years | | 6.2 | 3.7 | 11.5 | 20.0 | 19.8 |
| 25-29 years | | | 2.8 | 3.5 | 11.9 | 15.6 |
| 30-34 years | | | | 3.2 | 5.1 | 7.1 |
| 35-39 years | | | 4.6 | 2.7 | 2.5 | 3.5 |
| 40 years and over | | | | 7.0 | 6.9 | 8.4 |
| Total | 13.2 | 30.4 | 64.6 | 115.4 | 164.0 | 205.2 |

Table 2. Autistic Australians by age (thousands)

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Figure 4. Autistic Australians age breakdown below shows estimates of Autistic Australian in 2018 .

## Figure 4. Autistic Australians age breakdown

The clear feature of these data is that most Autistic Australians are aged under 25 years. In 2018,
over half (53.7%) of autistic Australians were aged under 15 years.

The population of Autistic Australians is distinctly different from the population of people with
disability more generally (see Figure 1 and Figure 2 above):

* the scale is different;
* the proportion of people with disability is relatively stable, while the proportion of Autistic
Australians is experiencing substantial growth (see Table 3 below); and
* the age profiles of the groups are very different.

Diagnosis rate is often easier to understand than raw numbers: it adjusts for increasing population.
The following Table shows diagnosis rates broken down by age across the years.

| | 1998 | 2003 | 2009 | 2012 | 2015 | 2018 |
| --- | --- | --- | --- | --- | --- | --- |
| 0-4 years | 0.078% | 0.095% | 0.245% | 0.401% | 0.399% | 0.687% |
| 5-9 years | 0.399% | 0.617% | 1.441% | 2.325% | 2.727% | 3.054% |
| 10-14 years | | 0.788% | 1.385% | 1.899% | 2.793% | 3.318% |
| 15-19 years | 0.012% | 0.287% | 0.780% | 1.493% | 1.796% | 2.697% |
| 20-24 years | 0.043% | 0.043% | 0.234% | 0.706% | 1.193% | 1.138% |
| 25-29 years | | | 0.178% | 0.206% | 0.666% | 0.831% |
| 30-34 years | | 0.036% | 0.036% | 0.201% | 0.291% | 0.381% |
| 35-39 years | | | | 0.173% | 0.159% | 0.203% |

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1998 2003 2009 2012 2015 2018

40+ years | | | 0.067% | 0.062% | 0.072%

Table 3. Autistic Australians by age (percentage of population)

ABS SDAC Autistic Australians (percent estimate)

O4 59 10-14 15-19 20-24 25-29 30-34 35-39 40+

Figure 5. Diagnosis rates for Autistic Australians

In 2018, a child aged 5-14 years was 44 times more likely to be diagnosed autistic than an adult over
40 years of age. The ABS says, "males were 3.5 times more likely than females to have the condition

an”
8

Some people see autism prevalence differently (see http://a4.org.au/node/1449). Some claim that
autism/ASD prevalence is stable at around 1.1% of the population. Professor Andrew Whitehouse,
Director, CliniKids, Telethon Kids Institute, said that Australia’s autism diagnosis rate was now in line
with other countries at around 1.1 per cent.

If the true prevalence of ASD is 1.1%, then 14 of every 15 autistic adults in Australia aged 40+ years
are yet to be diagnosed which means very few adults receive the services and supports that they
need for their ASD. And about 3 in 5 children aged 5-14 have an ASD diagnosis but they are not
autistic — which means they may be getting inappropriate services and supports and missing out on
different services that they need. If ASD prevalence is 1.1% of the population, then there are massive
ASD diagnosis errors in Australia for most ages; ASD diagnoses are wrong far more often than right.

Frankly, this is hard to believe; it is much more likely that the 1.1% uniform prevalence estimate is
wrong.

Figure 4 below shows the annual growth in the number of autistic Australian children and as a
fraction of the population (compensating for population growth).

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Figure 6. Growth rate (rate of increase) for Autistic Australians

Part of the increase in numbers over time relates to Australia's growing population. Following shows
the growth in diagnosis rate (ABS calls this "prevalence") for "autism" as a proportion of Australia’s
population.

The data collected in 2012 seems anomalous. There is some speculation that this increase may be
associated with the introduction of the HCWA package.

The following shows the variation in growing diagnosis rate across age ranges.

Figure 7. Increasing autism diagnosis rates by age group

Growth in the age range 5-14 years is relatively stable; more stable (the line is flatter) than for the
whole population. Autism diagnosis is growing fastest mostly for Australians aged 15 years and over.

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These data do not support the hypothesis that increasing growth in diagnoses was due to the HCWA
package.

## Education and employment

Some of the most valuable measures reported from the ABS SDAC is the unacceptable education and
employment outcomes observed for Autistic Australians. Just read what the report says.

> Autism and education
> 
> ...
> 
> In 2018, 92.3% of young people (101,900) aged 5 to 20 years on the autism
> spectrum attending school had some form of educational restriction (92.3%),
> including a small number who were unable to attend school because of their
> disability. Two in five (40.8%) of the children attended a special class in a
> mainstream school or a special school.
> 
> Of the 106,600 young people (aged 5 to 20 years) with autism who were
> attending school or another educational institution, 77.7% reported experiencing
> difficulty at their place of learning. Of those experiencing difficulties, the main
> problems encountered were fitting in socially (59.8%), learning difficulties (55.3%)
> and communication difficulties (51.5%).

and

> Autism and work
> 
> ...
> 
> The labour force participation rate was 38.0% among the 94,600 people of
> working age (15-64 years), living with autism spectrum disorders. This is
> compared with 53.4% of all working age people with disability and 84.1% of
> people without disability.
> 
> The unemployment rate for people with autism spectrum disorders was 34.1%,
> more than three times the rate for people with disability (10.3%) and almost eight
> times the rate of people without disability (4.6%).

Note that there had been very little progress on these challenges through the series of reports.

## AIHW autism report

In 2017, the AIHW used ABS SDAC data to produce produced its report about autism: see
https://www.aihw.gov.au/reports/disability/autism-in-australia/contents

Much of this report's content is similar to the ABS report. For example, it uses the term "prevalence"
instead of diagnosis rate.

The report describes "an overall prevalence rate of 0.7%, or about 1 in 150 people". We have already
described this "statistic" as misleading since this "average" figure describes just two tiny age bands;
most age ranges have a substantially different diagnosis rate.

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One of the more "interesting" claims in the AIHW report is that just 88% of autistic Australians "were
identified as also having disability" even though the DSM-5 diagnostic criteria for ASD require the
diagnosing clinician to report that the person at least "needs support" in the two key diagnostic
areas. This may be at odds with the ABS reporting from the same data collected in 2015, that 64.8%
of autistic Australians had severe or profound disability (this rate rose to 68.9% in 2018).

The AIHW report suggests that:

* 27% of autistic school students have intellectual disability.
* 29% of autistic adults (those over 15 years of age) are unable to work.

The AIHW goes on to describe data it collects for the National Disability Agreement.

## Autism in DSS Carer Allowance (child)
data

The DSS database for Carer Allowance (child) is another source of data about autistic children in
Australia. These data summarise autistic children in Australia from 0-15 years inclusive (ages 0-4
years are usually aggregated due to lower numbers).

Autism Aspergers Advocacy Australia (A4) has analysed and reported on data from the Centrelink
Carer Allowance (child) database since 2006 (the first report was in A4 Update Dec 2006).

Subsequently, the data was published as Williams K, MacDermott S, et. al. (2008), The prevalence of
autism in Australia. Can it be established from existing data? (published here or here). The article
observed that:

> This study has shown that Centrelink [now described as DSS Carer Allowance
> (child)] is the most comprehensive single source of national information about the
> number of individuals seeking funding with a diagnosis of autistic disorder or
> Asperger disorder.

A4 has obtained summary annual data summaries from DSS (formerly FaHCS) from 2004. Since 2013,
the datasets have included Autism Spectrum Disorder (DSM-5). The continued availability of these
datasets is a luxury; rarely is population data available as an ongoing series and in detail that allows
analyses like the following.

These data describe the population of autistic Australian children who registered for Carer Allowance
(child). This means that a health or allied health professional signed a comprehensive document as
evidence of the child's formal autism diagnosis.

These are not sample data; they are population data. As population data, there are no error
estimates: "errors" are people who have not been diagnosed or have a diagnosis but have not
registered to receive Carer Allowance (child) — either because they are unaware of the allowance or
because they have not completed the registration process. Consequently, these data are
conservative, an under-estimate of ASD diagnosis numbers.

The data presented below are for "primary disability". There are a few (additional) children who
register with autism as a secondary disorder.

Table 4. Summary data from Carer Allowance (child)Table 4 below shows the number of autistic
children registered for Carer Allowance (child) in June of each year. The "increase" column shows the
annual increase (the number of new registrations) each year, assuming there are no deaths or drop-
outs.

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| year | total 0-15 | increase | rate
(0-15 years) | rate
increase | rate
(5-14 years) | peak*
rate |
| --- | --- | --- | --- | --- | --- | --- |
| 2004 | 14,495 | | 0.34% | | 0.450% | 0.50% |
| 2005 | 16,549 | 14.1% | 0.39% | 13.7% | 0.513% | 0.62% |
| 2006 | 19,975 | 20.7% | 0.47% | 20.1% | 0.620% | 0.71% |
| 2007 | 23,786 | 19.1% | 0.55% | 17.8% | 0.745% | 0.83% |
| 2008 | 28,648 | 20.4% | 0.65% | 19.0% | 0.891% | 1.01% |
| 2009 | 34,084 | 19.0% | 0.77% | 17.4% | 1.051% | 1.18% |
| 2010 | 40,358 | 18.4% | 0.90% | 17.3% | 1.240% | 1.43% |
| 2011 | 46,726 | 15.8% | 1.04% | 15.0% | 1.421% | 1.63% |
| 2012 | 52,943 | 13.3% | 1.15% | 11.6% | 1.595% | 1.89% |
| 2013 | 58,018 | 9.6% | 1.25% | 7.9% | 1.723% | 2.05% |
| 2014 | 65,976 | 13.7% | 1.40% | 12.2% | 1.929% | 2.21% |
| 2015 | 72,508 | 9.9% | 1.52% | 8.5% | 2.076% | 2.31% |
| 2016 | 79,134 | 9.1% | 1.63% | 7.5% | 2.245% | 2.50% |
| 2017 | 84,460 | 6.7% | 1.72% | 5.4% | 2.349% | 2.58% |
| 2018 | 91,992 | 8.9% | 1.85% | 8.0% | 2.545% | 2.84% |
| 2019 | 91,704 | -0.3% | 1.83% | -1.5% | 2.513% | 2.88% |
| 2020 | 102,944 | 12.3% | 2.03% | 11.2% | 2.799% | 3.41% |
| 2021 | 107,703 | 4.6% | 2.10% | 3.6% | 2.911% | 3.58% |

Table 4. Summary data from Carer Allowance (child)

*Peak rate is the highest rate of diagnosed autism for any 1 year age group (mostly one of 12-14
years)

Figure 8 below shows increasing numbers of autistic children in Australia.

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Figure 8. Autistic children aged 0-15 years registered for Carer Allowance (child)

Figure 8 above shows visible dips in growth in 2013, 2017 and 2019. These are more apparent in a
chart showing annual growth (the 2nd derivative for the mathematically inclined).

Figure 9. Autistic children aged 0-15 years registered for Carer Allowance (child)

Plotting the rate (or proportion as a percentage) of autistic children in the population removes the
effect of population growth.

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Figure 10. Autistic children aged 0-15 years registered for Carer Allowance (child)

Figure 10 above shows the growth rate for Carer Allowance (child), that is the difference between
successive years. It shows growth both in the actual numbers and in the rate/proportion of autistic
children.

Figure 10 shows that the rate of growth appears to be decreasing generally. The glitches (dips) in the
graph may be relate to:

* 2005-2006 increased when Asperger's Disorder was added to Carer Allowance (child)
* 2007: a small dip as families focused on the 1000 hours campaign and the imminent Helping
Children with Autism (HCWA) package.
* 2013: saw the publication of the DSM-5 ... which may have delayed some diagnostic
assessments.
* 2017: is the start of the NDIS full roll-out.

Figure 11 below shows the percentage of children receiving Carer Allowance (child) for their
diagnosis of Autistic Disorder, Asperger's Disorder or Autism Spectrum Disorder in 2021.

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Figure 11. Age breakdown

Since 2013, DSS provided aggregated data for the 0-4 year age range so a single rate is shown for that
age range.

Figure 12 below shows an age breakdown of growing ASD diagnosis rates in Australia.

Figure 12. Increasing numbers of autistic children — Carer Allowance (child).

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As above, recent (since 2013) DSS provided datasets with aggregated data for the age range 0-4
years. These aggregated values are shown for the 2021 series in Chart 2 above.

Figure 13. Diagnosis rate (percentage) by age for year of birth 2003.

Figure 14 below shows how the age of diagnosis varies over time.

Figure 14. Diagnosis rate (percentage) by age for year of birth.

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A notable feature of this chart is the small fraction of autistic children who are diagnosed in time to
access government funding for early intervention. Substantially less than half the autistic children
born in any year are diagnosed by age 7 years when early intervention funding cuts off5.

Subsequent analyses include:

differences between the states and territories

diagnosis rates from females and males

## ASD and Carer Allowance history

From the outset, children with Autistic Disorder were eligible for Carer Allowance (child). In 2004, A4
negotiated eligibility for children with a diagnosis of Asperger's disorder.

In Dec 2006, A4 published a short analysis of the data it received from the Centrelink database on
Carer Allowance (child) (see 2006, Update Issue No. 7). Soon after, AABASD also produced a report
and a research paper6 using these data.

During the planning of the Helping Children with Autism package, A4 worked closely with FaCHSIA
(now DSS) staff to understand the population of autistic children.

## ASD data from the ABS SDAC and Carer Allowance
(child)

Data from these two sources at the same can be compared.

Figure 15. Reported diagnosis rates by age from ABS SDAC and Carer Allowance (child) in 2015

5 This may change; the NDIS is lifting the age to 9 years inline with WHO guidelines.

6 Williams K , MacDermott S , Ridley G , Glasson EJ , Wray JA: The prevalence of autism in Australia: can it be
established from existing data? J Paediatr Child Health 2008; 44:504–510
https://onlinelibrary.wiley.com/doi/10.1111/j.1440-1754.2008.01331.x

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The following table compares the data from these sources for the age range 5-14 years.

| | ABS SDAC
‘000s | ABS SDAC
rate | Carer Allowance (child)
'000s | Carer
Allowance
rate |
| --- | --- | --- | --- | --- |
| 1998 | 10.5 | 0.399% | | |
| 2003 | 19.0 | 0.704% | | |
| 2004 | | | 12.163 | 0.450% |
| 2005 | | | 13.891 | 0.513% |
| 2006 | | | 16.786 | 0.620% |
| 2007 | | | 20.203 | 0.745% |
| 2008 | | | 24.210 | 0.891% |
| 2009 | 38.6 | 1.413% | 28.721 | 1.051% |
| 2010 | | | 34.021 | 1.240% |
| 2011 | | | 39.443 | 1.421% |
| 2012 | 59.4 | 2.114% | 44.807 | 1.595% |
| 2013 | | | 49.162 | 1.723% |
| 2014 | | | 55.896 | 1.929% |
| 2015 | 81.3 | 2.759% | 61.191 | 2.076% |
| 2016 | | | 67.313 | 2.245% |
| 2017 | | | 71.878 | 2.349% |
| 2018 | 99.3 | 3.218% | 78.565 | 2.545% |
| 2019 | | | 79.098 | 2.513% |
| 2020 | | | 88.977 | 2.799% |
| 2021 | | | 93.437 | 2.911% |

Table 5. ABS SDAC rates vs Carer Allowance (child) data

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Figure 16 below shows these figures in graphical form.

Figure 16. ABS SDAC and Carer Allowance (child) — autistic Australians aged 5-14 years

Figure 17. ABS SDAC and Carer Allowance (child) — ASD diagnosis rates for Australians aged 5-14
years in 2015

Juxtaposing these data shows their resemblance. The shape and the scale of growing ASD diagnoses
in both these datasets are similar. It seems that not every family of a child they identify as autistic
decided to register for Carer Allowance (child) or completes the registration process successfully.

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A chart of the growth in the diagnosis rates makes the pattern of growth in the data sets clearer.

Figure 18. ABS SDAC and Carer Allowance (child) — annual growth

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## ASD in Australia's states and territories

Table 6 below shows ABS SDAC 2015 percentage results for autistic people in the population of each
state for all ages. These data show very rough relative proportions only.

| Autism by state
ABS SDAC 2015 | |
| --- | --- |
| ACT | 0.6% |
| NSW | 0.6% |
| NT | 0.6% |
| Qld | 0.8% |
| SA | 1.0% |
| Tas | 1.0% |
| Vic | 0.8% |
| WA | 0.5% |

Table 6. ABS SDAC 2015 rough proportions of Autistic Australians by state/territory

Figure 19. Percent of autistic Australians in each state/territory.

Different datasets show the substantial differences in ASD diagnosis rates between the different
Australian states and territories.

Carer Allowance (child) data is population data for children aged 0-15 years for children registered to
receive Carer Allowance (child) with Autism Spectrum Disorder (DSM-5), Autistic Disorder (DSM-IV)
or Aspergers Disorder (DSM-IV).

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Figure 20. Percent autistic Australian children receiving Carer Allowance (child).

In 2018, NDIA officials estimated that autistic NDIS participants would be 20% of the full NDIS roll-
out. But so far (as at October 2018), NDIS data published in the NDIS Quarterly Reports Year 5 Q1
indicate 29% nationally of participants are autistic.

The following shows different rates of autistic NDIS participants in the different states & territories.

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Figure 21. Percent of NDIS participants with primary disorder/condition is ASD.

At this stage, the NDIS has been rolled out for around 65% of Australians. The roll-out strategy may
affect the distribution in some states.

The differences between states in the above figures deserve analysis.

## Autistic women and girls

Concerns have been expressed about under-diagnosis of autistic women and girls. Figure mf-fig1.
below shows the recent increase in ASD diagnoses for Australian women and girls. 20% female is a
1:4 female:male ratio.

A 1:3 female:male ratio, with over 25% of Autistic Australians are female, was exceeded for Autistic
children aged 0-15 years by mid-2021.

The two main sources of ASD data sometimes includes this type of information.

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Figure 22. Percent Autistic female Australians – ABS SDAC vs Carer Allowance (child) by year.

Note: the apparently higher rate in the ABS SDAC data for 2012 looks anomalous.

Female percentage by state/territory.

Figure 23. Percent Autistic females Australians by state - 2018.

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Figure 24. Percent Autistic females Australians by state and age band.

Figure 24 above suggests that most states/territories also see increasing diagnosis of girls over time -
the percentage of younger girls is higher.

See also:

* https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4164392/
* https://www.autism.org.uk/about/what-is/gender.aspx
* https://www.autismawareness.com.au/could-it-be-autism/autism-and-girls/

## Autistic NDIS participants

At 34.77%, autism has surprised the NDIA by emerging as the most numerous primary disability type
in the NDIS (Dec 2022).

| Primary disability | Participants | rate |
| --- | --- | --- |
| ABI | 17385 | 3.03% |
| Autism | 199367 | 34.77% |
| Cerebral Palsy | 17468 | 3.05% |
| Developmental delay | 56811 | 9.91% |
| Down Syndrome | 11595 | 2.02% |
| Global developmental delay | 13312 | 2.32% |
| Hearing Impairment | 25615 | 4.47% |

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| Intellectual Disability | 87212 | 15.21% |
| Multiple Sclerosis | 9938 | 1.73% |
| Other | 7361 | 1.28% |
| Other Neurological | 21811 | 3.80% |
| Other Physical | 19633 | 3.42% |
| Other Sensory/Speech | 2154 | 0.38% |
| Psychosocial disability | 59512 | 10.38% |
| Spinal Cord Injury | 5697 | 0.99% |
| Stroke | 8592 | 1.50% |
| Visual Impairment | 9877 | 1.72% |
| total | 573340 | 100.00% |

Table 7. NDIS participants - primary disability - December 2022

Figure 25. NDIS participants - primary disability - December 2022

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While autism is the biggest primary disability type in the NDIS, it is not the biggest contributor to
overall NDIS Plan commitment in dollar terms. Table 1 below contrasts participant numbers with
their NDIS Plan budgets for the two biggest disability types in the NDIS.

| | Plan
participants | Budgets |
| --- | --- | --- |
| Autism | 34.8% | 19.2% |
| Intellectual Disability | 15.2% | 24.1% |

Table 8. Participant numbers vs Plan Budget

The remarkable difference between the share of NDIS participants and their plan budgets is due to
differences in the age profile and costs of plans at the different ages.

$180

$160

Thousands

$140
$120
$100
$80
$60
$40

$20

—8—ALLNDIS

—® Autism 7

—#— Intellectual Disability

=—®— Other disability

10 20 30 40 50 60 70

Figure 26. NDIS Plan budgets by age (years) December 2022

14

12

Thousands

10 |

=—@=— Other disability

—& Autism

10 20 30 40 50 60 70

Figure 27. NDIS participant numbers by age (years), December 2022

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A4 expects that:

* around 30% of autistic NDIS participants also have an intellectual disability;
* there are autistic people who list other disabilities as their primary disability; and
* a significant percentage of adults with intellectual disability are undiagnosed autistics.

The large numbers of young ‘other’ disability types is due to the Developmental Delay (DD) and
Global Developmental Delay (GDD) categories that are only applicable up to ages 6 and 5 years
respectively.

These data suggest that most children diagnosed initially with DD or GDD are subsequently
diagnosed as autistic. This suggests that more effort put into early diagnosis would achieve better
outcomes.

The proportion of autistic NDIS participants varies between states.

Di

Figure 28. Autistic NDIS participants by state, December 2022

## Autism prevalence research and
commentary

The research literature contains various reports on the prevalence and incidence of autism. The
methods used to collect data vary. Few provide population data.

If one accepts that autism is associated with a person’s neurology, then it does not change through
the person’s life. If the neurology were known and could be identified (perhaps through genetic
indicators), then theoretical incidence is just the birth rate needed to achieve the prevalence of
autism in the population.

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## Australia

In addition to the information above, reports of autism prevalence in Australia are variable.

There are other data sources described in the research literature.

Some references follow.

* Prior, M. (2003). Is there an increase in the prevalence of autism spectrum disorders?.
Journal of paediatrics and child health, 39(2), 81-82.
https://onlinelibrary.wiley.com/doi/abs/10.1046/j.1440-1754.2003.00097.x
* Buckley, B, Autism/ASD diagnosis rates in Australia (2005), Proceedings of 2004 Australian
Biennial Autism Conference, Autism Aspergers ACT, Canberra, Australia (see
https://a4.org.au/node/918 ).
* Glasson, E. J., MacDermott, S., Dixon, G., Cook, H., Chauvel, P., Maley-Berg, A., & Wray, J.
(2008). Management of assessments and diagnoses for children with autism spectrum
disorders: the Western Australian model. Medical Journal of Australia, 188(5), 288-291.
https://www.mja.com.au/system/files/issues/188 05 030308/gla10841 fm.pdf
* Williams, K., MacDermott, S., Ridley, G., Glasson, E.J. and Wray, J.A. (2008), The prevalence of
autism in Australia. Can it be established from existing data?. Journal of Paediatrics and Child
Health, 44: 504-510. https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1440-
1754.2008.01331.x
* Randall, M., Sciberras, E., Brignell, A., Ihsen, E., Efron, D., Dissanayake, C., & Williams, K.
(2016). Autism spectrum disorder: Presentation and prevalence in a nationally representative
Australian sample. Australian & New Zealand Journal of Psychiatry, 50(3), 243-253.
https://journals.sagepub.com/doi/abs/10.1177/0004867415595287?journalCode=anpa
* May, T., Sciberras, E., Brignell, A., & Williams, K. (2017). Autism spectrum disorder: updated
prevalence and comparison of two birth cohorts in a nationally representative Australian
sample. BMJ open, 7(5), e015549. https://bmjopen.bmj.com/content/7/5/e015549.abstract
* May, T., Brignell, A., & Williams, K. (2020). Autism spectrum disorder prevalence in children
aged 12–13 years from the longitudinal study of Australian children. Autism Research, 13(5),
821-827. https://onlinelibrary.wiley.com/doi/abs/10.1002/aur.2286
* Nielsen, T. C., Nassar, N., Boulton, K. A., Guastella, A. J., & Lain, S. J. (2023). Estimating the
Prevalence of Autism Spectrum Disorder in New South Wales, Australia: A Data Linkage
Study of Three Routinely Collected Datasets. Journal of Autism and Developmental Disorders,
1-9. https://link.springer.com/article/10.1007/s10803-022-05887-3

## Overseas

* Wing, L. (1993). The definition and prevalence of autism: A review. European child &
adolescent psychiatry, 2, 61-74. https://link.springer.com/article/10.1007/BF02098832
* Williams, J. G., Higgins, J. P., & Brayne, C. E. (2006). Systematic review of prevalence studies
of autism spectrum disorders. Archives of disease in childhood, 91(1), 8-15.
https://adc.bmj.com/content/91/1/8.short
* Sun, X., & Allison, C. (2010). A review of the prevalence of autism spectrum disorder in
Asia. Research in Autism Spectrum Disorders, 4(2), 156-167.
https://www.sciencedirect.com/science/article/abs/pii/S1750946709001068
* Bakare, M. O., & Munir, K. M. (2011). Autism spectrum disorders (ASD) in Africa: a
perspective. African journal of psychiatry, 14(3), 208-210.
https://journals.co.za/doi/abs/10.10520/EJC72892

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* Parner, E. T., Thorsen, P., Dixon, G., De Klerk, N., Leonard, H., Nassar, N., ... & Glasson, E. J.
(2011). A comparison of autism prevalence trends in Denmark and Western
Australia. Journal of autism and developmental disorders, 41, 1601-1608.
https://link.springer.com/article/10.1007/s10803-011-1186-0
* Elsabbagh, M., Divan, G., Koh, Y. J., Kim, Y. S., Kauchali, S., Marcín, C., ... & Fombonne, E.
(2012). Global prevalence of autism and other pervasive developmental disorders. Autism
research, 5(3), 160-179. https://onlinelibrary.wiley.com/doi/full/10.1002/aur.239
* Kopetz, P. B., & Endowed, E. D. L. (2012). Autism worldwide: Prevalence, perceptions,
acceptance, action. Journal of social Sciences, 8(2), 196.
http://www.ikefoundationforautism.org/e-library/Autism%20Worldwide.pdf
* Hahler, E. M., & Elsabbagh, M. (2015). Autism: A global perspective. Current Developmental
Disorders Reports, 2, 58-64. https://link.springer.com/article/10.1007/s40474-014-0033-3
* Boilson, A. M., Staines, A., Ramirez, A., Posada, M., & Sweeney, M. (2016). Operationalisation
of the European Protocol for Autism Prevalence (EPAP) for autism spectrum disorder
prevalence measurement in Ireland. Journal of autism and developmental disorders, 46,
3054-3067. https://link.springer.com/article/10.1007/s10803-016-2837-y
* Chiarotti, F., & Venerosi, A. (2020). Epidemiology of autism spectrum disorders: a review of
worldwide prevalence estimates since 2014. Brain sciences, 10(5), 274.
https://www.mdpi.com/2076-3425/10/5/274
* Li, Q., Li, Y., Liu, B., Chen, Q., Xing, X., Xu, G., & Yang, W. (2022). Prevalence of autism
spectrum disorder among children and adolescents in the United States from 2019 to
2020. JAMA pediatrics, 176(9), 943-945.
https://jamanetwork.com/journals/jamapediatrics/article-abstract/2793939
* Zeidan, J., Fombonne, E., Scorah, J., Ibrahim, A., Durkin, M. S., Saxena, S., ... & Elsabbagh, M.
(2022). Global prevalence of autism: A systematic review update. Autism Research, 15(5),
778-790. https://onlinelibrary.wiley.com/doi/full/10.1002/aur.2696
* Talantseva, O. I., Romanova, R. S., Shurdova, E. M., Dolgorukova, T. A., Sologub, P. S., Titova,
O. S., ... & Grigorenko, E. L. (2023). The global prevalence of autism spectrum disorder: A
three-level meta-analysis. Frontiers in Psychiatry, 14, 1071181.
https://www.frontiersin.org/articles/10.3389/fpsyt.2023.1071181/full
* Maenner MJ, Warren Z, Williams AR, et al. Prevalence and Characteristics of Autism
Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities
Monitoring Network, 11 Sites, United States, 2020. MMWR Surveill Summ 2023; 72 (No. SS-
2): 1–14. DOI: http://dx.doi.org/10.15585/mmwr.ss7202a1

## Gaps in understanding autism

The above material does not provide adequate information on the health, well-being, and life
outcomes for Autistic Australians. There is insufficient information about where Autistic Australians
live, what happens to them in Australia’s when they are embroiled in Australia’s injustice systems, or
in emergencies. Information given to the Disability Royal Commission suggest that outcomes in all
these areas are unsatisfactory.

Education and employment policy and programs might be improved though more detailed
understanding of how autistic people are affected in those contexts. Basically, better data is likely to
contribute to better policy and programs.

The developing National Disability Data Asset (NDDA) faces a substantial challenge to report on the
lives of Autistic Australians and to fill in the gaps in existing data sources.

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## Conclusions

In Australia:

* numerous sources of data describing an Autistic population. There is a level of agreement
between some of the data sources.
* autism diagnosis rates are increasing significantly.
* diagnosis rates for adults are much lower than for children.
* average age of autism diagnosis in children is above 6 years of age.
* diagnosis rates observed vary substantially with time and differ by age, gender and
state/territory. Estimating a single figure for autism prevalence in Australia’s population is
misleading: such a figure …
  * does not represent prevalence in either children or adults and
  * will be out of date quite quickly.
* gaps in data describing autistic lives need to be addressed so that policy and programs to
improve well-being are shown to be effective.

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DOCUMENT 1.4

Australian Government

Department of Social Services

# National Autism Strategy Oversight Council Membership Pack
## Oversight Council — Australian Government members checklist

Please return the full membership pack to the National Autism Strategy Secretariat at
NationalAutismStrategySecretariat@dss.gov.au by COB Friday, 11 August 2023.

If you have any queries, please contact the National Autism Strategy Secretariat.

| No. | Document and required
information | Included /
Not included | Comment |
| --- | --- | --- | --- |
| 2. | I have read and signed the *Conflict
of Interest Declaration*. | Yes / No | |
| 3. | I have read the *Privacy Collection
Notice*. | Yes / No | |

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# National Autism Strategy Oversight Council member
## Conflict of Interest Declaration

I, (NAME)

of (ADDRESS)

declare that to the best of my knowledge, and after making diligent inquiries, I have:

* subject to any declarations below, no actual, perceived or potential conflict of interest in a
financial, professional or other nature that would prevent me from exercising the role
without bias or other inappropriate influence, to participate in the National Autism
Strategy Oversight Council to provide independent, practical, expert, research and
professional advice on the development, finalisation and launch of the National Autism
*Strategy*.
* no personal obligation, allegiance or loyalty which would in any way affect my advisory
contributions in relation to the role on the National Autism Strategy Oversight Council.

I also agree that:

* I will immediately notify the National Autism Strategy Oversight Council Australian
Government and autistic co-chairs in writing (copied to the National Autism Strategy
Secretariat by email at NationalAutismStrategySecretariat@dss.gov.au) if an actual,
perceived or potential conflict of interest arises that has not already been declared in this
declaration.

Declarations:

* I agree to take any steps reasonably required by the Oversight Council co-chairs to
resolve or otherwise deal with any declared actual, perceived or potential conflicts of
interest.

SIGNED:

DATED:

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# Privacy Collection Notice for National Autism Strategy
## Oversight Council members

The Department of Social Services (the Department) is committed to ensuring the privacy and
confidentiality of the personal information of its National Autism Strategy Oversight Council
(Oversight Council) members. The Australian Privacy Principles (APPs) under the Privacy Act 1988
(Cth) and the Australian Privacy Principles (APPs) set out in Schedule 1 to that Act govern how the
Department handles your personal information.

### 1. Collection of your personal information

1.1. The Department collects personal information, including sensitive information, directly
from its Oversight Council members, in relation to you and your nominated emergency
contact and nominated proxy, as requested in the National Autism Strategy Oversight
Council Pack. This includes:

1.1.1. name and contact information for you, your nominated emergency contact and
nominated proxy;
1.1.2. details of any declared conflict of interest you may have;
1.1.3. information about your employer and business interests; and
1.1.4. banking details for remuneration purposes.

1.2. Before providing us with personal information about your nominated emergency contact
and nominated proxy, please let them know that you intend to do this, and provide them
with a copy of this Privacy Collection Notice.

### 2. Use and disclosure of your personal information

2.1. Personal information the Department collects from you is used to communicate with you
and your nominated emergency contact and nominated proxy if required. If you do not
provide the requested personal information to the Department your ability to fulfil your
functions as an Oversight Council member may be limited. We may also disclose your
personal information to the Australian Government Department of Health and Aged Care,
the Department of Education; the Department of Employment and Workplace Relations;
the National Disability Insurance Agency; the Department of the Prime Minister and
Cabinet (with members on the Oversight Council) and other entities, bodies or persons for
the purposes of administering and reporting on the functions and activities of the
Oversight Council or as described in paragraph 2.3.

2.2. In particular, by providing your personal information to the Department you consent to:

a. the Department naming you as a member of the Oversight Council to the Australian
Government Department of Health and Aged Care, the Department of Education;
the Department of Employment and Workplace Relations; the National Disability Insurance
Agency; the Department of the Prime Minister and Cabinet and the public;

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b. the Department naming you as a member of the Oversight Council in any reports
published by or on behalf of the Oversight Council, which may be made publicly
available;

c. the Department providing your name to regulatory bodies to enable it to carry out
relevant checks, such as working with children and vulnerable people registration
checks and criminal record checks.

d. if your appointment to a Council is due to a nomination by an organisation
(Organisation), you consent to the Department communicating with the Organisation
in relation to your appointment and performance with the Oversight Council.

2.3. From time to time, the Department enters into arrangements with third parties to provide
administrative and other services to the Department. These include administrative,
payroll, banking, IT, auditing, reporting and insurance services. These entities may have
access to your personal information for the purposes of providing services to the
Department in relation to your appointment and remuneration or the performance,
functions and activities of the Oversight Council.

2.4. The Department will not disclose your personal information overseas. Disclosure of your
personal information by the Department will comply with requirements of the Privacy Act
1988 and the APPs (www.legislation.gov.au/Details/C2014C00076).

### 3. Privacy Policy

3.1. The Department of Social Services privacy policy contains further detail about how we
handle your personal information including how you may access your personal
information, how to seek the correction of your personal information, how to make a
complaint about our privacy practices and how we will deal with your complaint.
Our privacy policy is available at www.dss.gov.au/privacy-policy. In relation to
paragraph 2.1, further details on how the:

a. Department of Health and Aged Care handles your personal information can be found
at www.health.gov.au/resources/publications/privacy-policy

b. Department of Education handles your personal information can be found at
www.education.gov.au/about-department/resources/department-education-
complete-privacy-policy

c. Department of Employment and Workplace Relations handles your personal
information can be found at www.dewr.gov.au/about-department/resources/dewr-
privacy-policy

d. the National Disability Insurance Agency handles your personal information can be
found at www.ndis.gov.au/about-us/policies/privacy

e. Department of the Prime Minister and Cabinet handles your personal information can
be found at www.pmc.gov.au/about-us/accountability-and-reporting/information-
and-privacy/privacy-policy

3.2. You should promptly notify the Department if the personal details you have provided in
the *Personal and Business Details Form* become out of date.

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DOCUMENT 1.5

# National Autism Strategy Oversight Council attendees
## Wednesday 16 August 2023 — in-person meeting
Department of Social Services office, 71 Athllon Drive, Greenway ACT

Time: 10 am — 5 pm (AEST); 8 am — 3 pm (AWST); 9.30 am — 4.30 pm (ACST)

## Attendees — Oversight Council members (in alphabetical order by surname)

| Name | Personal
pronoun | Community and sector member or organisation
representative |
| --- | --- | --- |
| Clare Gibellini | She/her | Autism Community and Sector co-chair |
| Luke Mansfield | He/him | Department of Social Services co-chair
Group Manager
Disability Strategy Group, Department of Social Services |
| Josie (Josephine) Barbaro | She/her | Research and professional sector member |
| Renay Barker-Mulholland | She/her | Autism Community and Sector member |
| `redacted: s47F - personal privacy` | He/him | First Assistant Secretary
Primary Care Division
Department of Health and Aged Care |
| `redacted: s47F - personal privacy` | She/her | Assistant Secretary
Student Learning and Disability Branch
Department of Education
(shared Council representation with Paula Sheehan) |
| `redacted: s47F - personal privacy` | He/him | Autism Community and Sector member |
| Victoria Gottliebsen | She/her | Research and professional sector member |
| Jenny Karavolos | She/her | Autism Community and Sector member |
| Seb (Sebastian)
Langdon-Macmillan | He/him | Autism Community and Sector member |
| Heidi La Paglia Reid | She/her | Autism Community and Sector member |
| Andrew Pfeiffer | He/him | Autism Community and Sector member |
| `redacted: s47F - personal privacy` | She/her | First Assistant Secretary,
Social Policy Division
Department of the Prime Minister and Cabinet |
| `redacted` | She/her | Assistant Secretary
Targeted Employment Policy Branch
Department of Employment and Workplace Relations |

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| Name | Personal
pronoun | Community and sector member or organisation
representative |
| --- | --- | --- |
| `redacted: s47F - personal privacy` | She/her | Director, Disability Strategy and Schooling Policy
Student Learning and Disability Branch
Department of Education
(shared Council representation with Dannie Edmonds) |
| `redacted: s47F - personal privacy` | He/they | Autism Community and Sector member |
| Samantha (Sam) Taylor | She/her | General Manager, Childrens Taskforce
National Disability Insurance Agency
(replaced `redacted: s47F - personal privacy` from 7 August 2023) |

## Attendees — Department of Social Services (DSS)

| Name | Personal
pronoun | Role | Reason for attending the meeting |
| --- | --- | --- | --- |
| `redacted: s47F - personal privacy` | — | Branch Manager
- Disability Support
Branch | Provides the Council co-chairs and the Council with the
DSS perspective, advice and support, if requested. |
| `redacted: s47F - personal privacy` | She/her | Director
National Autism
Strategy Secretariat | Provides co-chairs and the Council with the DSS
perspective, advice and support, if requested. |
| `redacted: s47F - personal privacy` | She/her | Assistant Director
National Autism
Strategy Secretariat | Provides secretariat advice and support to the DSS
managers and the Council. Primary minute-taker.
Records action items. |
| `redacted: s47F - personal privacy` | She/her | Assistant Director
National Autism
Strategy Secretariat | Provides Secretariat advice and support to the DSS
managers and the Council.
Monitors Microsoft Teams meeting chat and relays
questions and responses to the co-chairs. |
| `redacted: s47F - personal privacy` | She/her | Assistant Director
Autism Policy | Observer. Provides autism policy and consultation
advice and support to the DSS managers and the
Council. |
| `redacted: s47F - personal privacy` | She/her | Assistant Director
Autism Policy | Observer. Provides autism policy and consultation
advice and support to the DSS managers and the
Council. |
| `redacted: s47F - personal privacy` | She/her | Policy officer
National Autism
Strategy Secretariat | Provides secretariat advice and support to the DSS
managers and the Council. Supplementary minute-taker
and records action items. |

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DOCUMENT 2

From: National Autism Strategy Secretariat <NationalAutismStrategySecretariat@dss.gov.au>

Sent: Friday, 11 August 2023 1:16 PM

To: `redacted: s47F - personal privacy`
Taylor, Samantha; `redacted: s47F - personal privacy`

Cc: `redacted: s47F - personal privacy`
National Autism Strategy Secretariat

Subject: Your visitor parking arrangements for your attendance at the National Autism Strategy Oversight
Council meeting at the Department of Social Services on Wednesday 16 August 2023
[SEC=UNOFFICIAL]

Attachments: Department of Social Services visitor car parking information.docx

Good afternoon all

Thank you for confirming your attendance at the National Autism Strategy Oversight Council meeting on
Wednesday 16 August 2023 (10 am to 5.40 pm AEST) at the Department of Social Services Canberra office (Enid
Lyons Building, 71 Athllon Drive, Greenway ACT 2900).

We have booked all day basement visitor car parking for you in the Enid Lyons Building and arranged for our security
desk and security guards to be prepared for your attendance.

Attached is a map of the Enid Lyons Building with some directions on how to access your visitor car park.

On the day, please drive around to the front entrance of the Enid Lyons Building (revolving doors with the Precinct
Café adjacent to the security desk) where there are car park holding bays and attend the security guards’ desk. The
security guards will assist you in accessing your basement bollard visitor car spaces.

Please call me if you have any issues.

Kind regards

`redacted` (she/her)
Assistant Director

Autism Policy/National Autism Strategy Secretariat
Disability Support Branch, Disability Strategy Group

Department of Social Services
P: `redacted: s47F - personal privacy` | M: `redacted: s47F - personal privacy` | E: `redacted: s47F - personal privacy`

The Department of Social Services acknowledges the Traditional Owners of Country throughout Australia, and their
continuing connection to land, water and community. We pay our respects to them and their cultures, and to Elders both
past and present.

1

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DOCUMENT 2.1

# Department of Social Services (Canberra)
## visitor car parking information
Enid Lyons Building, 71 Athllon Drive, Greenway ACT 2900
## National Autism Strategy Oversight Council meeting –
Wednesday 16 August 2023 (10 am to approx. 5.40 pm)

Page 857 of 911

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## Source release page 159

Page 858 of 911

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## Source release page 160

DOCUMENT 3

From: Taylor, Samantha

Sent: Friday, 11 August 2023 3:00 PM

To: National Autism Strategy Secretariat

Cc: `redacted: s47F - personal privacy`

Subject: RE: FOR INFORMATION AND COMPLETION PLEASE: National Autism Strategy Oversight Council
background information and Council membership pack for Samantha Taylor
[SEC=OFFICIAL:Sensitive]

Attachments: S Taylor National Autism Strategy Membership pack.pdf

Thank you — my management pack is attached. Sam

Samantha Taylor PSM

General Manager

CEO Office

National Disability Insurance Agency
M `redacted: s47F - personal privacy` E `redacted: s47F - personal privacy`

Delivered by the
National Disability
Insurance Agency

The NDIA acknowledges the Traditional Custodians of Country throughout Australia and their continuing
connection to land, sea and community. We pay our respects to them and their cultures and to Elders past,
present and emerging.

From: National Autism Strategy Secretariat <NationalAutismStrategySecretariat@dss.gov.au>
Sent: Wednesday, August 2, 2023 2:13 PM
To: `redacted: s47F - personal privacy` Taylor, Samantha
Subject: FOR INFORMATION AND COMPLETION PLEASE: National Autism Strategy Oversight Council background
information and Council membership pack for Samantha Taylor [SEC=OFFICIAL:Sensitive]

Good afternoon/`redacted` and Sam

Thank you for informing us that `redacted: s47F - personal privacy` has resigned and that from 7 August 2023, Sam Taylor will be the
NDIA representative on the National Autism Strategy Oversight Council. Please see the National Autism Strategy
website at National Autism Strategy | Department of Social Services, Australian Government (dss.gov.au) for more
details about the Oversight Council and development of the Strategy.

1

Page 859 of 911

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## Source release page 161

To assist with Sam’s briefing for the NDIA representative role on the Oversight Council, attached is some background
information on the Oversight Council. This includes recent emails to the Oversight Council providing the:

* Terms of Reference (operating principles) for the Oversight Council
* draft 16 August meeting agenda for the Council’s feedback
* Autism CRC community insights and research reports and disability research reports for pre-reading before the
Oversight Council meeting in Canberra on Wednesday 16 August 2023 (10 am to 5 pm). The meeting will be held
at the Department of Social Services (DSS) national office at 71 Athllon Drive, Greenway ACT
* the most recent list of Oversight Council members, including a list of DSS secretariat staff and their roles and
responsibilities, particularly during Council meetings.

Sam, would you please complete and return the attached Oversight Council membership pack to the secretariat by
email at `redacted: s47` by COB Friday 11 August.

The minutes from the most recent Oversight Council meeting on 3 July 2023 will be circulated to the Council next
week for agreement.

The final 16 August meeting agenda and meeting papers will also be circulated to the Council early next week to
prepare for the 16 August meeting.

The Oversight Council has a GovTEAMS collaboration site at GovTEAMS Dashboard to share ideas, resources and to
provide feedback on Oversight Council meeting papers. I’ll ask `redacted: s47F - personal privacy`, Assistant Director, Autism Policy
to contact Sam to assist in arranging access to this Oversight Council collaboration site.

Please let me know if you need more information.

Kind regards

`redacted: s47F - personal privacy`

`redacted: s47F - personal privacy` (she/her)
Assistant Director
Autism Policy
Disability Support Branch, Disability Strategy Group
Department of Social Services
P: `redacted: s47F - personal privacy` | M: `redacted: s47F - personal privacy` | E: `redacted: s47F - personal privacy`

The Department of Social Services acknowledges the Traditional Owners of Country throughout Australia, and their
connection to land, water and community. We pay our respects to them and their cultures, and to Elders both
past and present.

From: `redacted: s47F - personal privacy`
Sent: Wednesday, 2 August 2023 8:46 AM
To: National Autism Strategy Secretariat <`redacted: s47`>
Subject: RE: FOR CONFIRMATION PLEASE: Samantha Taylor attending the National Autism Strategy Oversight
Council in person meeting on behalf of `redacted: s47F - personal privacy` [SEC=OFFICIAL]

Hi `redacted: s47F - personal privacy`

`redacted: s47F - personal privacy` has resigned and finishes up this Friday – Sam Taylor (she/her) is GM of the Children’s
Taskforce and she will attend going forward.

Sam’s details;

M `redacted: s47F - personal privacy` E `redacted: s47F - personal privacy`

2

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## Source release page 162

FOI 24/25-1567

If you need any further information, please don't hesitate in contacting me .

Warm Regards
`redacted: s47F - personal privacy`

`redacted: s47F - personal privacy`

Executive Support to Samantha Taylor PSM
General Manager – Enterprise Process Improvement
General Manager – Childrens Taskforce

Mobile: `redacted: s47F - personal privacy` email: `redacted: s47F - personal privacy`

From: National Autism Strategy Secretariat <Naxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx@xxx.xxx.xx>
Sent: Wednesday, August 2, 2023 8:42 AM
To: `redacted: s47F - personal privacy`
Subject: FOR CONFIRMATION PLEASE: Samantha Taylor attending the National Autism Strategy Oversight Council in person meeting on behalf of `redacted: s47F - personal privacy` [SEC=OFFICIAL]

Good `redacted: s47F - personal privacy`

I hope you’re well.

I wanted to confirm if `redacted: s47F - personal privacy` will be attending the National Autism Strategy Oversight Council meeting on Wednesday 16 August (10 am to 5 pm) at the Department of Social Services office in Canberra.

I noticed that the 16 August meeting invite had been sent to Samantha Taylor who accepted this meeting invite. Is Samantha attending the 16 August meeting on `redacted: s47F - personal privacy` behalf?

If so, would you please send me Samantha’s position details and personal pronouns, e.g. she/her or they/them so I can update our attendees list and What to expect from the meeting document for our Oversight Council members.

Please call me on my mobile number below, if needed.

Many thanks

`redacted: s47F - personal privacy`

`redacted: s47F - personal privacy` (she/her)
Assistant Director
Autism Policy
Disability Support Branch, Disability Strategy Group
Department of Social Services
P: `redacted: s47F - personal privacy` | M: `redacted: s47F - personal privacy` | E: `redacted: s47F - personal privacy`
The Department of Social Services acknowledges the Traditional Owners of Country throughout Australia, and their continuing connection to land, water and community. We pay our respects to them and their cultures, and to Elders both past and present.

----Original Appointment----
From: `redacted: s47F - personal privacy` On Behalf Of Taylor, Samantha
Sent: Tuesday, 1 August 2023 4:25 PM
To: National Autism Strategy Secretariat
Subject: Accepted: National Autism Strategy Oversight Council in person meeting [SEC=OFFICIAL]
When: Wednesday, 16 August 2023 9:00 AM-5:00 PM (UTC+10:00) Canberra, Melbourne, Sydney.
Where: Canberra, A.C.T (Location to be advised)

3
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FOI 24/25-1567

********************************************************************** IMPORTANT: This e-mail is for the use of the intended recipient only and may contain information that is confidential, commercially valuable and/or subject to legal or parliamentary privilege. If you are not the intended recipient you are notified that any review, re-transmission, disclosure, dissemination or other use of, or taking of any action in reliance upon, this information is prohibited and may result in severe penalties. If you have received this e-mail in error please notify the sender immediately and delete all electronic and hard copies of this transmission together with any attachments. Please consider the environment before printing this e-mail **********************************************************************
********************************************************************** IMPORTANT: This e-mail is for the use of the intended recipient only and may contain information that is confidential, commercially valuable and/or subject to legal or parliamentary privilege. If you are not the intended recipient you are notified that any review, re-transmission, disclosure, dissemination or other use of, or taking of any action in reliance upon, this information is prohibited and may result in severe penalties. If you have received this e-mail in error please notify the sender immediately and delete all electronic and hard copies of this transmission together with any attachments. Please consider the environment before printing this e-mail **********************************************************************

4
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DOCUMENT 3.1

FOI 24/25-1567

> [Image not converted to Markdown -- "Australian Government Department of Social Services logo" -- check the source PDF page for the actual content]

# National Autism Strategy Oversight Council Membership Pack
## Oversight Council — Australian Government members checklist

Please return the full membership pack to the National Autism Strategy Secretariat at NationalAutismStrategySecretariat@dss.gov.au by COB Friday, 11 August 2023.

If you have any queries, please contact the National Autism Strategy Secretariat.

| No. | Document and required information | Included / Not included | Comment |
|---|---|---|---|
| 2. | I have read and signed the *Conflict of Interest Declaration*. | Yes / No | |
| 3. | I have read the *Privacy Collection Notice*. | Yes / No | |

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FOI 24/25-1567

> [Image not converted to Markdown -- "Australian Government Department of Social Services logo" -- check the source PDF page for the actual content]

# National Autism Strategy Oversight Council member
## Conflict of Interest Declaration

I, (NAME) SAMANTHA TAYLOR

of (ADDRESS) LEVEL 9, 300 ELIZABETH ST SURRY HILLS NSW 2010

declare that to the best of my knowledge, and after making diligent inquiries, I have:

* subject to any declarations below, no actual, perceived or potential conflict of interest in a financial, professional or other nature that would prevent me from exercising the role without bias or other inappropriate influence, to participate in the National Autism Strategy Oversight Council to provide independent, practical, expert, research and professional advice on the development, finalisation and launch of the National Autism Strategy.

* no personal obligation, allegiance or loyalty which would in any way affect my advisory contributions in relation to the role on the National Autism Strategy Oversight Council.

I also agree that:

* I will immediately notify the National Autism Strategy Oversight Council Australian Government and autistic co-chairs in writing (copied to the National Autism Strategy Secretariat by email at NationalAutismStrategySecretariat@dss.gov.au) if an actual, perceived or potential conflict of interest arises that has not already been declared in this declaration.

Declarations:

* I agree to take any steps reasonably required by the Oversight Council co-chairs to resolve or otherwise deal with any declared actual, perceived or potential conflicts of interest.

SIGNED: [Handwritten Signature]

DATED: 11 AUGUST 2023

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## Source release page 166

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> [Image not converted to Markdown -- "Australian Government Department of Social Services logo" -- check the source PDF page for the actual content]

# Privacy Collection Notice for National Autism Strategy
## Oversight Council members

The Department of Social Services (the Department) is committed to ensuring the privacy and confidentiality of the personal information of its National Autism Strategy Oversight Council (Oversight Council) members. The Australian Privacy Principles (APPs) under the *Privacy Act 1988* (*Cth*) and the Australian Privacy Principles (APPs) set out in Schedule 1 to that Act govern how the Department handles your personal information.

### 1. Collection of your personal information

1.1. The Department collects personal information, including sensitive information, directly from its Oversight Council members, in relation to you and your nominated emergency contact and nominated proxy, as requested in the National Autism Strategy Oversight Council Pack. This includes:

1.1.1. name and contact information for you, your nominated emergency contact and nominated proxy;

1.1.2. details of any declared conflict of interest you may have;

1.1.3. information about your employer and business interests; and

1.1.4. banking details for remuneration purposes.

1.2. Before providing us with personal information about your nominated emergency contact and nominated proxy, please let them know that you intend to do this, and provide them with a copy of this Privacy Collection Notice.

### 2. Use and disclosure of your personal information

2.1. Personal information the Department collects from you is used to communicate with you and your nominated emergency contact and nominated proxy if required. If you do not provide the requested personal information to the Department your ability to fulfil your functions as an Oversight Council member may be limited. We may also disclose your personal information to the Australian Government Department of Health and Aged Care, the Department of Education; the Department of Employment and Workplace Relations; the National Disability Insurance Agency; the Department of the Prime Minister and Cabinet (with members on the Oversight Council) and other entities, bodies or persons for the purposes of administering and reporting on the functions and activities of the Oversight Council or as described in paragraph 2.3.

2.2. In particular, by providing your personal information to the Department you consent to:

a. the Department naming you as a member of the Oversight Council to the Australian Government Department of Health and Aged Care, the Department of Education; the Department of Employment and Workplace Relations; the National Disability Insurance Agency; the Department of the Prime Minister and Cabinet and the public;

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## Source release page 167

FOI 24/25-1567

b. the Department naming you as a member of the Oversight Council in any reports published by or on behalf of the Oversight Council, which may be made publicly available;

c. the Department providing your name to regulatory bodies to enable it to carry out relevant checks, such as working with children and vulnerable people registration checks and criminal record checks.

d. if your appointment to a Council is due to a nomination by an organisation (Organisation), you consent to the Department communicating with the Organisation in relation to your appointment and performance with the Oversight Council.

2.3. From time to time, the Department enters into arrangements with third parties to provide administrative and other services to the Department. These include administrative, payroll, banking, IT, auditing, reporting and insurance services. These entities may have access to your personal information for the purposes of providing services to the Department in relation to your appointment and remuneration or the performance, functions and activities of the Oversight Council.

2.4. The Department will not disclose your personal information overseas. Disclosure of your personal information by the Department will comply with requirements of the Privacy Act 1988 and the APPs (www.legislation.gov.au/Details/C2014C00076).

### 3. Privacy Policy

3.1. The Department of Social Services privacy policy contains further detail about how we handle your personal information including how you may access your personal information, how to seek the correction of your personal information, how to make a complaint about our privacy practices and how we will deal with your complaint.

Our privacy policy is available at www.dss.gov.au/privacy-policy. In relation to paragraph 2.1, further details on how the:

a. Department of Health and Aged Care handles your personal information can be found at www.health.gov.au/resources/publications/privacy-policy

b. Department of Education handles your personal information can be found at www.education.gov.au/about-department/resources/department-education-complete-privacy-policy

c. Department of Employment and Workplace Relations handles your personal information can be found at www.dewr.gov.au/about-department/resources/dewr-privacy-policy

d. the National Disability Insurance Agency handles your personal information can be found at www.ndis.gov.au/about-us/policies/privacy

e. Department of the Prime Minister and Cabinet handles your personal information can be found at www.pmc.gov.au/about-us/accountability-and-reporting/information-and-privacy/privacy-policy

3.2. You should promptly notify the Department if the personal details you have provided in the *Personal and Business Details Form* become out of date.

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DOCUMENT 4

FOI 24/25-1567

From: Taylor, Samantha
Sent: Monday, 14 August 2023 7:48 PM
To: National Autism Strategy Secretariat
Cc: `redacted: s47F - personal privacy`
Subject: RE: FOR INFORMATION: A pre-brief with Luke Mansfield, DSS National Autism Strategy Oversight Council co-chair [SEC=OFFICIAL:Sensitive]

Thanks `redacted: s47F - personal privacy`. S

From: National Autism Strategy Secretariat <NationalAutismStrategySecrexxxxxx@xxx.xxx.xx>
Sent: Monday, August 14, 2023 10:37 AM
To: Taylor, Samantha `redacted: s47F - personal privacy`
Cc: `redacted: s47F - personal privacy`
Subject: FOR INFORMATION: A pre-brief with Luke Mansfield, DSS National Autism Strategy Oversight Council co-chair [SEC=OFFICIAL:Sensitive]

Good morning Sam

I contacted Luke Mansfield’s executive assistant and executive officer to arrange a pre-brief discussion for you and Luke tomorrow morning before the National Autism Strategy Oversight Council meeting this Wednesday.

`redacted: s47F - personal privacy` `redacted: s47F - personal privacy` or `redacted` should be in touch with you shortly about Luke’s availability.

I look forward to meeting you on Wednesday.

Many thanks

`redacted: s47F - personal privacy`

`redacted: s47F - personal privacy` (she/her)
Assistant Director
Autism Policy
Disability Support Branch, Disability Strategy Group
Department of Social Services
P: `redacted: s47F - personal privacy` | E: `redacted: s47F - personal privacy`
The Department of Social Services acknowledges the Traditional Owners of Country throughout Australia, and their continuing connection to land, water and community. We pay our respects to them and their cultures, and to Elders both past and present.

From: Taylor, Samantha `redacted: s47F - personal privacy`
Sent: Friday, 11 August 2023 4:51 PM
To: National Autism Strategy Secretariat <xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx@xxx.xxx.xx>
Cc: `redacted: s47F - personal privacy`
Subject: RE: THANK YOU AND FOR CONSIDERATION: Your signed National Autism Strategy Oversight Council membership pack and a brief chat with the DSS Council co-chair [SEC=OFFICIAL:Sensitive]

Thank you so much. I would very much appreciate a pre-brief with Luke. I’m new to this space and want to make sure that I’ve got a good understanding of the commonwealth position. I could do a call with Luke on Tuesday (between 9.30-12). He has my number I think.

Thanks S

1
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<a id="source-page-169"></a>

## Source release page 169

FOI 24/25-1567

Samantha Taylor PSM
General Manager
CEO Office
National Disability Insurance Agency

M `redacted: s47F - personal privacy` E `redacted: s47F - personal privacy`

> [Image not converted to Markdown -- "Delivered by the National Disability Insurance Agency logo" -- check the source PDF page for the actual content]

The NDIA acknowledges the Traditional Custodians of Country throughout Australia and their continuing connection to land, sea and community. We pay our respects to them and their cultures and to Elders past, present and emerging.

From: National Autism Strategy Secretariat <NationalAutismStrategySecretariat@dss.gov.au>
Sent: Friday, August 11, 2023 4:13 PM
To: Taylor, Samantha
Cc: `redacted`
Subject: THANK YOU AND FOR CONSIDERATION: Your signed National Autism Strategy Oversight Council membership pack and a brief chat with the DSS Council co-chair [SEC=OFFICIAL:Sensitive]

Good afternoon Sam

Thank you for returning your signed National Autism Strategy Oversight Council membership pack.

We look forward to meeting you at next Wednesday’s Council meeting in Canberra.

As you’re a new Oversight Council member, would you like us to arrange a brief meeting/call for you with the DSS Council co-chair, Luke Mansfield? My apologies that we haven't raised this with you sooner.

Luke is unavailable on Monday 14 August but I may be able to arrange a 10–15 minute chat for you with Luke on Tuesday 15 August or before the meeting on Wednesday 16 August, if you’re available.

Please let us know if you or `redacted: s47F - pe` need anything else.

Many thanks

`redacted: s47F - personal privacy`

Assistant Director
Autism Policy/National Autism Strategy Secretariat
Disability Support Branch, Disability Strategy Group
Department of Social Services
P: `redacted: s47F - personal privacy` | E: `redacted: s47F - personal privacy`

2
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## Source release page 170

FOI 24/25-1567

The Department of Social Services acknowledges the Traditional Owners of Country throughout Australia, and their continuing connection to land, water and community. We pay our respects to them and their cultures, and to Elders both past and present.

From: Taylor, Samantha
Sent: Friday, 11 August 2023 3:00 PM
To: National Autism Strategy Secretariat <NationalAutismStrategySecretariat@dss.gov.au>
Cc: `redacted`
Subject: RE: FOR INFORMATION AND COMPLETION PLEASE: National Autism Strategy Oversight Council background information and Council membership pack for Samantha Taylor [SEC=OFFICIAL:Sensitive]

Thank you — my management pack is attached. Sam

Samantha Taylor PSM
General Manager
CEO Office
National Disability Insurance Agency
M `redacted: s47F - personal privacy` E `redacted: s47F - personal privacy`

> [Image not converted to Markdown -- "Delivered by the National Disability Insurance Agency logo" -- check the source PDF page for the actual content]

The NDIA acknowledges the Traditional Custodians of Country throughout Australia and their continuing connection to land, sea and community. We pay our respects to them and their cultures and to Elders past, present and emerging.

From: National Autism Strategy Secretariat <NationalAutismStrategySecretariat@dss.gov.au>
Sent: Wednesday, August 2, 2023 2:13 PM
To: `redacted: s47F - personal privacy` Taylor, Samantha `redacted: s47F - personal privacy`
Cc: `redacted: s47F - personal privacy`
Subject: FOR INFORMATION AND COMPLETION PLEASE: National Autism Strategy Oversight Council background information and Council membership pack for Samantha Taylor [SEC=OFFICIAL:Sensitive]

Good afternoon `redacted: s47F - p` and Sam

Thank you for informing us that `redacted: s47F - personal privacy` has resigned and that from 7 August 2023, Sam Taylor will be the NDIA representative on the National Autism Strategy Oversight Council. Please see the National Autism Strategy website at National Autism Strategy | Department of Social Services, Australian Government (dss.gov.au) for more details about the Oversight Council and development of the Strategy.

To assist with Sam’s briefing for the NDIA representative role on the Oversight Council, attached is some background information on the Oversight Council. This includes recent emails to the Oversight Council providing the:

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## Source release page 171

FOI 24/25-1567

* Terms of Reference (operating principles) for the Oversight Council
* draft 16 August meeting agenda for the Council’s feedback
* Autism CRC community insights and research reports and disability research reports for pre-reading before the Oversight Council meeting in Canberra on Wednesday 16 August 2023 (10 am to 5 pm). The meeting will be held at the Department of Social Services (DSS) national office at 71 Athllon Drive, Greenway ACT
* the most recent list of Oversight Council members, including a list of DSS secretariat staff and their roles and responsibilities, particularly during Council meetings.

Sam, would you please complete and return the attached Oversight Council membership pack to the secretariat by email at NationalAutisxxxxxxxxxxxxxxxxxxxxx@xxx.xxx.xx by COB Friday 11 August.

The minutes from the most recent Oversight Council meeting on 3 July 2023 will be circulated to the Council next week for agreement.

The final 16 August meeting agenda and meeting papers will also be circulated to the Council early next week to prepare for the 16 August meeting.

The Oversight Council has a GovTEAMS collaboration site at GovTEAMS Dashboard to share ideas, resources and to provide feedback on Oversight Council meeting papers. I’ll ask `redacted: s47F - personal privacy`, Assistant Director, Autism Policy to contact Sam to assist in arranging access to this Oversight Council collaboration site.

Please let me know if you need more information.

Kind regards

`redacted: s47F - personal privacy`

`redacted: s47F - personal privacy` (she/her)
Assistant Director
Autism Policy
Disability Support Branch, Disability Strategy Group
Department of Social Services
P: `redacted: s47F - personal privacy` | M: `redacted: s47F - personal privacy` | E: `redacted: s47F - personal privacy`
The Department of Social Services acknowledges the Traditional Owners of Country throughout Australia, and their continuing connection to land, water and community. We pay our respects to them and their cultures, and to Elders both past and present.

From: `redacted: s47F - personal privacy`
Sent: Wednesday, 2 August 2023 8:46 AM
To: National Autism Strategy Secretariat <xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx@xxx.xxx.xx>
Subject: RE: FOR CONFIRMATION PLEASE: Samantha Taylor attending the National Autism Strategy Oversight Council in person meeting on behalf of `redacted: s47F - personal privacy` [SEC=OFFICIAL]

Hi `redacted: s47F - personal privacy`

`redacted: s47F - personal privacy` has resigned and finishes up this Friday – Sam Taylor (she/her) is GM of the Children’s Taskforce and she will attend going forward.

Sam’s details;

M `redacted: s47F - personal privacy` E `redacted: s47F - personal privacy`

If you need any further information, please don’t hesitate in contacting me .

4
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## Source release page 172

FOI 24/25-1567

Warm Regards
`redacted: s47F - pe`

`redacted: s47F - personal privacy`

Executive Support to Samantha Taylor PSM
General Manager – Enterprise Process Improvement
General Manager – Childrens Taskforce

Mobile: `redacted: s47F - personal privacy` email: `redacted: s47F - personal privacy`

From: National Autism Strategy Secretariat <Naxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx@xxx.xxx.xx>
Sent: Wednesday, August 2, 2023 8:42 AM
To: `redacted: s47F - personal privacy`
Subject: FOR CONFIRMATION PLEASE: Samantha Taylor attending the National Autism Strategy Oversight Council in person meeting on behalf of `redacted: s47F - personal privacy` [SEC=OFFICIAL]

Good `redacted: s47F - p`

Good morning

I hope you’re well.

I wanted to confirm if `redacted: s47F - personal privacy` will be attending the National Autism Strategy Oversight Council meeting on Wednesday 16 August (10 am to 5 pm) at the Department of Social Services office in Canberra.

I noticed that the 16 August meeting invite had been sent to Samantha Taylor who accepted this meeting invite. Is Samantha attending the 16 August meeting on `redacted: s47F - persona` behalf?

If so, would you please send me Samantha’s position details and personal pronouns, e.g. she/her or they/them so I can update our attendees list and What to expect from the meeting document for our Oversight Council members.

Please call me on my mobile number below, if needed.

Many thanks

`redacted: s47F - personal privac`

`redacted: s47F - personal privacy` (she/her)
Assistant Director
Autism Policy
Disability Support Branch, Disability Strategy Group
Department of Social Services
P: `redacted: s47F - personal privacy` | M: `redacted: s47F - personal privacy` | E: `redacted: s47F - personal privacy`
The Department of Social Services acknowledges the Traditional Owners of Country throughout Australia, and their continuing connection to land, water and community. We pay our respects to them and their cultures, and to Elders both past and present.

-----Original Appointment-----
From: `redacted: s47F - personal privacy` On Behalf Of Taylor, Samantha
Sent: Tuesday, 1 August 2023 4:25 PM
To: National Autism Strategy Secretariat
Subject: Accepted: National Autism Strategy Oversight Council in person meeting [SEC=OFFICIAL]
When: Wednesday, 16 August 2023 9:00 AM-5:00 PM (UTC+10:00) Canberra, Melbourne, Sydney.
Where: Canberra, A.C.T (Location to be advised)

5
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FOI 24/25-1567

********************************************************************** IMPORTANT: This e-mail is for the use of the intended recipient only and may contain information that is confidential, commercially valuable and/or subject to legal or parliamentary privilege. If you are not the intended recipient you are notified that any review, re-transmission, disclosure, dissemination or other use of, or taking of any action in reliance upon, this information is prohibited and may result in severe penalties. If you have received this e-mail in error please notify the sender immediately and delete all electronic and hard copies of this transmission together with any attachments. Please consider the environment before printing this e-mail **********************************************************************
********************************************************************** IMPORTANT: This e-mail is for the use of the intended recipient only and may contain information that is confidential, commercially valuable and/or subject to legal or parliamentary privilege. If you are not the intended recipient you are notified that any review, re-transmission, disclosure, dissemination or other use of, or taking of any action in reliance upon, this information is prohibited and may result in severe penalties. If you have received this e-mail in error please notify the sender immediately and delete all electronic and hard copies of this transmission together with any attachments. Please consider the environment before printing this e-mail **********************************************************************
********************************************************************** IMPORTANT: This e-mail is for the use of the intended recipient only and may contain information that is confidential, commercially valuable and/or subject to legal or parliamentary privilege. If you are not the intended recipient you are notified that any review, re-transmission, disclosure, dissemination or other use of, or taking of any action in reliance upon, this information is prohibited and may result in severe penalties. If you have received this e-mail in error please notify the sender immediately and delete all electronic and hard copies of this transmission together with any attachments. Please consider the environment before printing this e-mail **********************************************************************
********************************************************************** IMPORTANT: This e-mail is for the use of the intended recipient only and may contain information that is confidential, commercially valuable and/or subject to legal or parliamentary privilege. If you are not the intended recipient you are notified that any review, re-transmission, disclosure, dissemination or other use of, or taking of any action in reliance upon, this information is prohibited and may result in severe penalties. If you have received this e-mail in error please notify the sender immediately and delete all electronic and hard copies of this transmission together with any attachments. Please consider the environment before printing this e-mail **********************************************************************

6
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## Source release page 174

DOCUMENT 5

FOI 24/25-1567

From: National Autism Strategy Secretariat <NationalAutismStrategySecretariat@dss.gov.au>
Sent: Thursday, 31 August 2023 3:29 PM
To: Taylor, Samantha; `redacted: s47F - personal privacy`
Cc: National Autism Strategy Secretariat
Subject: National Autism Strategy - Oversight Council Diagnosis, Services and Supports Working Group Representative [SEC=OFFICIAL]

Dear National Disability Insurance Agency

The Department of Social Services’ (the department) is currently developing the National Autism Strategy (the Strategy).

To support the development of the National Autism Strategy, an Oversight Council was established in May 2023. Members include representatives from the autistic community and sector, the research sector, and the Australian Government.

As part of the governance arrangements, the Oversight Council will be supported by four Working Groups: social inclusion; economic inclusion; diagnosis, supports and services; and health and mental health (already established and being led by Department of Health and Aged Care).

The working groups will explore particular issues and ideas arising from the national consultations and provide advice to Oversight Council to inform development of the National Autism Strategy.

The Oversight Council will be responsible for tasking the working groups to undertake deep dives on relevant issues. It is anticipated the Working Groups will meet on a fairly regular basis over the next 2-3 months (possibly every 3 weeks). All meetings will be held virtually.

We are seeking a nomination from your department to be a member of the Diagnosis, Services and Supports Working Group. Ideally, members should be at the SES Band 1 or EL2 level.

The department strives to represent diversity in our working groups and that is extended to our Government representatives. Lived experience is highly valued in this forum.

If you could please provide your nominations by Friday 8th September

If you have any questions, please contact the Secretariat by email at NationalAutismStrategySecretariax@xxx.xxx.xx or `redacted: s47F - personal privacy`, Director, Autism Policy, at `redacted: s47F - personal privacy` or on `redacted: s47F - personal privacy`.

Yours sincerely

Luke Mansfield (He/Him)

Group Manager, Disability Strategy Group

Gender Equality Network Champion

Department of Social Services
P: `redacted: s47F - personal privacy` E: `redacted: s47F - personal privacy`
M: `redacted: s47F - personal privacy`
EA: `redacted: s47F - personal privacy`
EO: `redacted: s47F - personal privacy`

1
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## Source release page 175

FOI 24/25-1567

I strive to ensure inclusive arrangements where everyone can participate. If there is something needed to support you in an upcoming meeting with me, please let my office know.

The Department of Social Services acknowledges the traditional owners of country throughout Australia, and their continuing connection to land, water and community. We pay our respects to them and their cultures, and to Elders both past and present.

2
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## Source release page 176

DOCUMENT 6

FOI 24/25-1567

From: Taylor, Samantha

Sent: Monday, 11 September 2023 9:13 AM

To: NationalAutismStrategySecretariat@dss.gov.au

Cc: `redacted: s47F - personal privacy`

Subject: FW: National Autism Strategy - Oversight Council Social Inclusion Working Group Representative [SEC=OFFICIAL]

Luke,
Thank you for the opportunity for the National Disability Insurance Agency (NDIA) to provide nominations for the social inclusion, economic inclusion and diagnosis, supports and services working groups.

Please see below our nominations:

**Social Inclusion working group**
* `redacted: s47F - personal privacy` EL2 Director, Agency Policy - `redacted: s47F - personal privacy`

**Economic Inclusion working group**
* `redacted: s47F - personal privacy` EL2 Director, Research and Evaluation - `redacted: s47F - personal privacy`

**Diagnosis, Supports and Services working group**
* `redacted: s47F - personal privacy` EL2 Director, Children's Taskforce - `redacted: s47F - personal privacy`

If you require further information, please let me know.

Sam

Samantha Taylor PSM
General Manager, Policy Advice and Research
General Manager, Childrens Taskforce
General Manager, Enterprise Process Improvement
National Disability Insurance Agency

M `redacted: s47F - personal privacy` E `redacted: s47F - personal privacy`

> [Image not converted to Markdown -- "Delivered by the National Disability Insurance Agency logo" -- check the source PDF page for the actual content]

The NDIA acknowledges the Traditional Custodians of Country throughout Australia and their continuing connection to land, sea and community. We pay our respects to them and their cultures and to Elders past, present and emerging.

From: National Autism Strategy Secretariat <NationalAutismStrategySecretariat@dss.gov.au>
Sent: Thursday, August 31, 2023 3:57 PM

1
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## Source release page 177

FOI 24/25-1567

To: McNAUGHTON, SCOTT <SCOTT.MCNAUGHTON @ndis.gov.au>; `redacted: s47F - personal privacy` Taylor, Samantha `redacted: s47F - personal privacy`
Cc: National Autism Strategy Secretariat <NationalAutismStrategySecretariat@dss.gov.au>
Subject: National Autism Strategy - Oversight Council Social Inclusion Working Group Representative [SEC=OFFICIAL]

Dear National Disability Insurance Agency

The Department of Social Services’ (the department) is currently developing the National Autism Strategy (the Strategy).

To support the development of the National Autism Strategy, an Oversight Council was established in May 2023. Members include representatives from the autistic community and sector, the research sector, and the Australian Government.

As part of the governance arrangements, the Oversight Council will be supported by four Working Groups: social and health and mental health (already established and being led by Department of Health and Aged Care).

The working groups will explore particular issues and ideas arising from the national consultations and provide advice to Oversight Council to inform development of the National Autism Strategy.

The Oversight Council will be responsible for tasking the working groups to undertake deep dives on relevant issues. It is anticipated the Working Groups will meet on a fairly regular basis over the next 2-3 months (possibly every 3 weeks). All meetings will be held virtually.

We are seeking a nomination from your department to be a member of the Social Inclusion Working Group. Ideally, members should be at the SES Band 1 or EL2 level.

The department strives to represent diversity in our working groups and that is extended to our Government representatives. Lived experience is highly valued in this forum.

If you could please provide your nominations by Friday 8th September

If you have any questions, please contact the Secretariat by email at NationalAutismStrategySecretariat@dss.gov.au

Yours sincerely

Luke Mansfield (He/Him)
Group Manager, Disability Strategy Group
Gender Equality Network Champion

Department of Social Services

I strive to ensure inclusive arrangements where everyone can participate. If there is something needed to support you in an upcoming meeting with me, please let my office know.

The Department of Social Services acknowledges the traditional owners of country throughout Australia, and their continuing connection to land, water and community. We pay our respects to them and their cultures, and to Elders both past and present.

2
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## Source release page 178

DOCUMENT 7

FOI 24/25-1567

From: National Autism Strategy Secretariat <NationalAutismStrategySecretariat@dss.gov.au>
Sent: Wednesday, 18 October 2023 4:18 PM
To: Taylor, Samantha `redacted: s47F - personal privacy`
Cc: `redacted: s47F - personal privacy`
Subject: RE: Proposed alternative National Autism Strategy Oversight Council December 2023 meeting date [SEC=OFFICIAL]

Good afternoon Sam

Thanks for confirming you can attend the proposed Oversight Council meeting on Tuesday 12 December in Canberra.

We hope to receive majority Council consensus by COB tomorrow for the Tuesday 12 December meeting. We will then send the meeting placeholder to lock the date in the Council members’ calendars.

Many thanks

`redacted: s47F - personal privacy`

`redacted: s47F - personal privacy` (she/her)
Assistant Director
Autism Policy
Disability Support Branch, Disability Strategy Group
Department of Social Services
P: `redacted: s47F - personal privacy` | E: `redacted: s47F - personal privacy`
The Department of Social Services acknowledges the Traditional Owners of Country throughout Australia, and their continuing connection to land, water and community. We pay our respects to them and their cultures, and to Elders both past and present.

From: Taylor, Samantha `redacted: s47F - personal privacy`
Sent: Wednesday, 18 October 2023 3:48 PM
To: National Autism Strategy Secretariat <NationalAutismStrategySxxxxxxxxxx@xxx.xxx.xx>
Cc: `redacted: s47F - personal privacy`
Subject: RE: Proposed alternative National Autism Strategy Oversight Council December 2023 meeting date [SEC=OFFICIAL]

I can attend. Thanks S

From: National Autism Strategy Secretariat <Naxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx@xxx.xxx.xx>
Sent: Wednesday, October 18, 2023 10:58 AM
To: `redacted: s47F - personal privacy` Taylor, Samantha `redacted: s47F - personal privacy`
Cc: MANSFIELD, Luke `redacted: s47F - personal privacy`

Subject: Proposed alternative National Autism Strategy Oversight Council December 2023 meeting date [SEC=OFFICIAL]

Hello Oversight Council members

1
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## Source release page 179

FOI 24/25-1567

Thank you for your feedback on the proposed Oversight Council meeting date options in December 2023.

Due to the number of Council members who are unavailable for the proposed December meeting dates (Tuesday 5 December and Thursday 7 December 2023), we have an alternative date of Tuesday 12 December (10 am to 5 pm AEDT) for the in-person meeting in Canberra.

Please confirm your availability for an all-day in-person meeting on Tuesday 12 December 2023 by COB Friday 20 October, if possible.

We understand that December is a busy period and want to lock the meeting date in your diaries as soon as possible. We also understand if you need to send proxies for this meeting.

Please contact the secretariat if you require any assistance.

The secretariat will forward the meeting invite to secure the meeting date in people’s diaries as soon as majority Council consensus is reached.

Kind regards
`redacted: s47F - pe`

`redacted: s47F - personal privacy` (she/her)
Director
Autism Policy • Disability Support Branch
E `redacted: s47F - personal privacy`
P `redacted: s47F - personal privacy` • M `redacted: s47F - personal privacy`

Ngunnawal Country. PO Box 9820 Canberra, ACT 2601

Note: I work flexibly, Monday — Thursday. I have sent you this message because it’s a good time for me. I do not expect you to read, respond or action it outside your regular hours.

> [Image not converted to Markdown -- "Know Your Country logo" -- check the source PDF page for the actual content]

The Department of Social Services acknowledges the Traditional Owners of Country throughout Australia, and their continuing connection to land, water and community. We pay our respects to them and their cultures, and to Elders both past and present.

********************************************************************** IMPORTANT: This e-mail is for the use of the intended recipient only and may contain information that is confidential, commercially valuable and/or subject to legal or parliamentary privilege. If you are not the intended recipient you are notified that any review, re-transmission, disclosure, dissemination or other use of, or taking of any action in reliance upon, this information is prohibited and may result in severe penalties. If you have received this e-mail in error please notify the sender immediately and delete all electronic and hard copies of this transmission together with any attachments. Please consider the environment before printing this e-mail **********************************************************************

2
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## Source release page 180

DOCUMENT 8

FOI 24/25-1567

From: National Autism Strategy Secretariat <NationalAutismStrategySecretariat@dss.gov.au>
Sent: Thursday, 19 October 2023 8:21 AM
To: `redacted: s47F - personal privacy` Taylor, Samantha; `redacted: s47F - personal privacy`
Cc: `redacted: s47F - personal privacy` Autism Policy
Subject: For Information: Summary of National Autism Strategy Submissions to 2 October 2023 [SEC=OFFICIAL]
Attachments: Summary of NAS submissions to 2 October_ (002) OSC.docx
Importance: High

Good Morning Oversight Council members,
Please find attached the latest report from The Social Deck on Submissions as at 2 October 2023.

Whilst this report is not for further circulation, we hope it is a useful document as you work through the next set of tasking questions for the Working Groups.

We expect to have the next report from The Social Deck by the end of the month.

Any questions please contact nationalautismstrategysecretariat@dss.gov.au.

Kind regards

National Autism Strategy Secretariat
Disability Support Branch, Disability Strategy Group
Department of Social Services

E: NationalAutismStrategySecretariat@dss.gov.au

The Department of Social Services acknowledges the Traditional Owners of Country throughout Australia, and their continuing connection to land, water and community. We pay our respects to them and their cultures, and to Elders both past and present.

1
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DOCUMENT 8.1

FOI 24/25-1567

> [Image not converted to Markdown -- "Certified B Corporation logo" -- check the source PDF page for the actual content]

> [Image not converted to Markdown -- "The Social Deck logo" -- check the source PDF page for the actual content]

# National Autism Strategy consultations

## Summary of questionnaire responses and submissions (as of 2 October 2023)

16 October 2023

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# Contents

Overview ...................................................................................................................................... 3

Demographics of questionnaire respondents ............................................................................... 3

* Other identity groups .......................................................................................................... 4
* Location .............................................................................................................................. 4

What does a National Autism Strategy need to achieve? ............................................................. 5

How can the Strategy support the rights, autonomy and diversity of the Autistic community? .... 6

What needs to improve so Autistic people are better supported across their whole life? ............ 7

What can be done to better support Autistic people from different population groups? ............. 7

What might help to improve people’s understanding of autism? ................................................. 8

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## Overview

This document provides a summary of the 265 questionnaire responses (see demographic details below) and 11 written and/or emailed submissions received as of 2 October 2023. It builds on the data and themes presented in the previous iteration of this report, which covered questionnaire responses and submissions to 20 September 2023.

10 written or emailed responses were received from individuals, including from Autistic people, family members of Autistic people, and health professionals working with Autistic people. 1 written response was from an organisation working with Autistic people.

## Demographics of questionnaire respondents

**258 individuals** had completed the questionnaire as of 2 October 2023, along with **7 representatives of organisations**:

The following table shows the numbers of people who identified as being Autistic people, family members or carers of Autistic people, etc.

| | |
|---|---|
| I am an Autistic person / a person with Autism | 141 |
| I am a family member of an Autistic person (or people) | 146 |
| I am an informal carer of an Autistic person | 55 |
| I am completing this as a carer/trusted friend of someone with profound or high support needs | 14 |
| I am looking into whether I might be Autistic | 27 |
| I am looking into whether someone in my care might be Autistic | 3 |
| I work with an Autistic person or people | 68 |
| I’m a disability support worker | 5 |
| I work as a health, education or other professional | 71 |
| Children or Early Childhood Services | 5 |
| Allied health | 3 |
| Educational institution | 2 |
| I work for an Autism or disability organisation | 21 |
| Autism sector organisation or advocate | 3 |
| Disability organisation | 1 |
| Disability service provider | 5 |
| I work in federal, state/territory or local government | 22 |
| Other interest | 19 |
| Prefer not to say | 1 |

3 Summary of questionnaire responses and submissions (as of 2 October 2023)

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### Other identity groups

| | |
|---|---|
| Aboriginal and/or Torres Strait Islander | 4 |
| Culturally or linguistically diverse background (CALD) | 28 |
| LGBTIQA+ | 65 |
| People with disability (other than Autism) | 70 |

### Location

#### State/territory

| | |
|---|---|
| Australian Capital Territory | 14 |
| New South Wales | 85 |
| Northern Territory | 0 |
| Queensland | 51 |
| South Australia | 13 |
| Tasmania | 9 |
| Victoria | 66 |
| Western Australia | 18 |

#### Type of area

| | |
|---|---|
| Major city | 174 |
| Inner regional | 64 |
| Outer regional | 13 |
| Remote | 3 |

4 Summary of questionnaire responses and submissions (as of 2 October 2023)

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## Summary of responses by question

### What does a National Autism Strategy need to achieve?

A large number of questionnaire responses and submissions highlighted the importance of the strategy **raising awareness and understanding of autism** and the lived experience of Autistic people (mentioned in 41% of responses). This included raising awareness among the wider community of the diversity of autism, the value Autistic people can bring to society, schools and workplaces, and addressing existing stigma and preconceptions involving Autistic people. It was noted that there is a need to move away from making accommodations for Autistic people and towards more inclusion in general, as well as raising awareness as a way to increase compassion and positive responses in the community towards Autistic people.

A large number of responses also highlighted the need for the strategy to result in **better access to supports, services and resources** for Autistic people (mentioned in 41% of responses). This included a number of comments highlighting the need for better recognition of the support needs of Autistic people by the NDIS, along with many comments focusing on the need for improved access to trained or specialist health workers. The importance of improved access to mental health support for Autistic people was noted, along with the need for consistent and up-to-date education for medical professionals at all levels. It was suggested that there is a need for comprehensive and holistic healthcare, especially for LGBTQIA+ Autistic people who currently struggle in accessing appropriate healthcare, as well as greater recognition and support of health and allied health professionals with specific expertise in working with Autistic people.

Many respondents highlighted the need for the strategy to support and enable **more individualised support and services** for Autistic people which recognise and respond to their unique circumstances and needs (mentioned in 34% of responses). It was noted that there is a need for a better understanding of “all different sub types of Autism”, a more person-centred approach to supporting Autistic people, and for Autistic people to be involved in all aspects of the strategy’s development and implementation.

Many respondents noted that **better educational support and outcomes for Autistic students** would be a key outcome of the strategy (mentioned in 30% of responses). It was suggested that there is a need for improvements to the education system to ensure it is person-centred and evidence-based, and that there is a need for better individualised support for Autistic students to help them achieve their full potential. It was noted that the strategy should result in Autistic children having access to quality inclusive education and should address existing negative or traumatic experiences for Autistic students in school settings.

Many respondents also suggested the strategy should result in **improved diagnosis processes and outcomes** for Autistic people (mentioned in 30% of responses). It was noted that making access to diagnosis for adults both affordable and attainable is important, and that there is a need for training, education and clearly communicated, meaningful guidelines for all involved in diagnosis. The need for better access to diagnostic assessments “for women who present differently” was

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highlighted, along with the need for improved diagnosis and early intervention for Autistic children.

Multiple responses also focused on the need for the strategy to result in:

* **Better outcomes in general** which will improve the lives of Autistic people (mentioned in 27% of responses).
* **Improved support in workplaces** and in the employment sector for Autistic people (mentioned in 20% of responses).

### How can the Strategy support the rights, autonomy and diversity of the Autistic community?

A large number of respondents highlighted the importance of the strategy being based on a **person-centred and individualised approach** to supporting the rights, autonomy and diversity of the Autistic community (mentioned in 53% of responses). It was noted that the strategy needs to be strength-based, based on the input of Autistic people, and reflective of the diverse range of experiences, skills and abilities of Autistic people. It was suggested that the strategy must clearly reflect the fact that not all Autistic people are the same or share the same characteristics, must include and respond to the perspectives of people who are not able to clearly communicate their needs, and should result in inclusion of Autistic people in every level of decision-making.

A large number of respondents noted that the strategy can support the rights, autonomy and diversity of the Autistic community by **raising awareness and understanding** among the wider community (mentioned in 47% of responses). It was suggested that current stigma and preconceptions about Autistic people are leading to them being alienated, infantilised or mistreated, and that there are significant issues currently with a lack of understanding of what autism is and what it can be like to live with autism. It was suggested that the strategy could result in campaigns that “challenge stereotypes and misconceptions and highlight the unique strengths and perspectives of Autistic individuals”, and that specific focus should be placed on raising awareness and improving understanding in the education and employment sectors.

The importance of **improved and more accessible services and supports** to support the rights, autonomy and diversity of the Autistic community was highlighted by some respondents (mentioned in 23% of responses). This includes the need for better support for Autistic people in health and allied health settings, improved training and education of carers and support workers, and better support for Autistic people in the justice system.

Some respondents noted the importance of **improved educational outcomes for young Autistic people** (mentioned in 19% of responses), while some highlighted the need for **better support and understanding among employers and in workplaces** (mentioned in 17% of responses).

Some respondents also highlighted the importance of **clear outcomes, implementation and accountability** as a result of the strategy (mentioned in 15% of responses).

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### What needs to improve so Autistic people are better supported across their whole life?

Many respondents noted the need for **improved support and funding** to ensure Autistic people are better supported across their whole life (mentioned in 42% of responses). It was noted that there is a need for support across all life stages, along with improved investment in ensuring all environments are safe and appropriate to the needs of autistic people. Some comments here focused on the need for improved NDIS funding, along with improved funding of health and allied health supports. The need for specific support for young adults and adults with autism was highlighted, along with the need for improved funding for social supports and programs for Autistic people.

Related to the above, many respondents highlighted the need for **improved access to support services** (mentioned in 40% of responses), including more availability of support in regional areas, improved access to health and allied health supports, and better availability of specialist supports, activities and programs for Autistic people, including access to ‘autism specific’ health services. It was suggested that there is a need for better coordination of, and collaboration between, support services, along with accessible options for regular review and support of Autistic adults.

Many respondents highlighted the need for **better education and training of a range of professions who engage with and support people with disability** (mentioned in 31% of responses) including teachers and health professionals. It was noted that many vulnerable students are not receiving support from well-trained staff in educational settings, and that more health professionals need up-to-date education in identifying and supporting Autistic people.

Some respondents also highlighted the importance of improved:

* **Awareness of autism and inclusion of Autistic people** in all aspects of society (mentioned in 28% of responses).
* **Processes and outcomes for diagnosis** of autism (mentioned in 26% of responses).
* **Housing, employment and financial outcomes** for Autistic people was also highlighted (mentioned in 25% of responses).

### What can be done to better support Autistic people from different population groups?

A large number of respondents highlighted the need for a **person-centred and individualised approach** to ensuring there is better support for Autistic people from different population groups (mentioned in 44% of responses). It was noted that the individual needs and circumstances of Autistic people from diverse backgrounds need to be recognised and fully understood, and that Autistic people should be involved at all stages in informing, developing and implementing supports, services or policies designed to improve their lives. The importance of culturally specific and appropriate support services and workers for Autistic people from diverse backgrounds was

7 Summary of questionnaire responses and submissions (as of 2 October 2023)

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highlighted, along with the need for respect of cultural practices and understandings surrounding diagnosis.

The importance of providing **more funding and support for Autistic people from different population groups** was also highlighted (mentioned in 23% of responses), including more funding within schools, more funding for outreach to specific population groups, improved supports within communities, and more specific health, mental health and allied health services for individual population groups. It was also noted there is a need to recognise and enhance the work being done by advocacy, support and community organisations to support Autistic people from different population groups.

It was suggested that there is a need for **more training and education for a wide range of services and workers** who are supporting Autistic people from diverse population groups (mentioned in 18% of responses). It was noted that teachers and school staff need training to be able to better support Autistic children who have other diverse support needs, and that training and education is needed for all health, mental health and allied health professionals who are working with Autistic people from specific population groups, including women, older people, people from CALD backgrounds, First Nations people and LGBTIQA+ people. The idea of recruiting, training and supporting staff from diverse population groups to enable improved support for Autistic people within their own communities was also suggested.

The importance of **more awareness, education and public promotion of autism** and the lived experience of diverse population groups was also highlighted (mentioned in 16% of responses), with it noted that there is a need for more inclusion of Autistic people from diverse backgrounds in the media and in public education campaigns. It was also suggested that more culturally relevant and population specific education, training and resources need to be developed for Autistic people themselves, as well as their families, carers and communities.

Some respondents noted the need for **improved support from health services** that is responsive to the specific needs of Autistic people from diverse population groups (mentioned in 15% of responses), while some highlighted the need for **better support for Autistic children within school settings** (mentioned in 13% of responses).

### What might help to improve people’s understanding of autism?

A large number of respondents noted the need for **awareness-raising and public education** to improve people’s understanding of Autism population groups (mentioned in 52% of responses). It was suggested that media coverage, TV shows and podcasts should include information about autism and depictions of the real lives and positive attributes of Autistic people, and that greater public awareness will result in increased inclusion, respect and positive relationships for Autistic people. It was noted that more education around “what it means to be autistic and what the strengths are” will result in more positive employment, social and educational outcomes for Autistic people.

8 Summary of questionnaire responses and submissions (as of 2 October 2023)

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Many respondents highlighted the need to improve understanding of autism among **teachers and educators** (mentioned in 31% of responses) and among **health workers and services** (mentioned in 31% of responses). It was noted that health professionals and educators need a better understanding of what it means to be autistic and how this can “look different between males and females”.

Many responses noted the need for **programs of training and education** for people working with and supporting Autistic people (mentioned in 29% of responses), including “truly inclusive, neuroaffirming education”. It was suggested that mandatory professional development should be implemented for a range of services who interact with and support Autistic people, including police, the justice system and all health and allied health services.

It was also noted that, to improve people’s understanding of Autism population groups, there is a need to:

* Facilitate increased social and community inclusion for all Autistic people, including through targeted community, social and sporting programs (mentioned in 17% of responses).
* Show the diversity and individual experiences of Autistic people throughout all awareness-raising activities and initiatives (mentioned in 15% of responses).
* Improve awareness of autism in workplaces and among employers (mentioned in 15% of responses).

9 Summary of questionnaire responses and submissions (as of 2 October 2023)

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DOCUMENT 9

FOI 24/25-1567

From: National Autism Strategy Secretariat <NationalAutismStrategySecretariat@dss.gov.au>
Sent: Thursday, 19 October 2023 3:41 PM
To: `redacted: s47F - personal privacy`
Cc: MANSFIELD, Luke; `redacted: s47F - personal privacy`
Subject: Your availability for the four proposed 2023–24 National Autism Strategy Oversight Council standing meetings to task the working groups [SEC=OFFICIAL]
Attachments: NAS Working group meeting schedule.docx

Hello Oversight Council members

Thank you for your feedback on arranging additional Oversight Council one-hour virtual meetings to task the Social Inclusion; Economic Inclusion; and Diagnosis, Supports and Services Working Groups. These meetings include developing, refining and endorsing questions for the three working groups to research and report back to the Council.

Attached is the 2023-24 meeting schedule for the three working groups with the following four proposed standing Oversight Council meetings to task the working groups:

1. Monday 30 October 2023 — Oversight Council meet to agree second set of tasking questions
2. Monday 20 November 2023 — Oversight Council meet to agree third set of tasking questions
3. Monday, 8 January 2024 — Oversight Council meet to agree fourth set of tasking questions
4. Monday, 22 January 2024 — Oversight Council meet to agree fifth set of tasking questions.

Please confirm your availability for the proposed meeting times in the Doodle poll by COB Wednesday 25 October 2023.

The secretariat will forward meeting invites for the four meetings on Thursday 26 October 2023.

Kind regards

National Autism Strategy Secretariat
Disability Support Branch, Disability Strategy Group
Department of Social Services

E: NationalAutismStrategySecretariat@dss.gov.au

The Department of Social Services acknowledges the Traditional Owners of Country throughout Australia, and their continuing connection to land, water and community. We pay our respects to them and their cultures, and to Elders both past and present.

From: `redacted: s47F - personal privacy`
Sent: Monday, 16 October 2023 9:49 AM
To: Autism Strategy Secretariat <NationalAutismStrategySecretariat@dss.gov.au>; `redacted: s47F - personal privacy`
Cc: Autism Policy <AutismPolicy@dss.gov.au>; `redacted: s47F - personal privacy`

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`redacted: s47F - personal privacy`

Subject: Re: FOR ACTION PLS: Early actions from 26 September Oversight Council meeting [SEC=OFFICIAL]

Hi `redacted: s47F - pe` / All,

I hope everyone had a great weekend.

Thank you for the attached information and effort you put into these. It is very much appreciated and helps us organise ourselves.

To support our clarity:

1. It is assumed the date of the next face to face NASOC meeting is not the 7th Dec as there is an Economic Working Group scheduled.
2. It is indicated that all the Working Groups will be working on the NASOC's questions in similar timeframes. Given the Diagnostic working group has had its 2nd session already is there any lessons learnt from that Working Group to be shared?
3. I will add it to a poll of some sort but think its worth it that we meet with the Co- Chairs so we can explain / get feedback regarding the questions to calibrate before the next lot of questions are refined.

In regards to the Social Deck document - thank you. Regarding the Community Engagement Stats that you sent out under separate cover on Friday are you seeking more promotion from us all and is there any particular groups to target that are underrepresented and won't be covered by the targeted focus groups?

Thanks in advance.

Kind regards
`redacted: s47F - personal`

From: `redacted: s47F - personal privacy`
Sent: Saturday, October 14, 2023 3:41 PM
To: `redacted: s47F - personal privacy` MANSFIELD, Luke `redacted: s47F - personal privacy` ; National Autism Strategy Secretariat <xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx@xxx.xxx.xx>; `redacted: s47F - personal privacy`
Cc: `redacted: s47F - personal privacy` Autism Policy <xxxxxxxxxxxx@xxx.xxx.xx>; `redacted: s47F - personal privacy`

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`redacted: s47F - personal privacy`

Subject: RE: FOR ACTION PLS: Early actions from 26 September Oversight Council meeting [SEC=OFFICIAL]

Hi `redacted: s47F - persona` and everyone

Hope you are all having a lovely weekend.

I have attempted to put together a calendar of working group meetings and when the Oversight Council could meet to discuss tasking questions (please see attached). I appreciate that what makes sense or is logical to me isn’t the same for everyone. So if the attached doesn’t work for you, please let me know and I will think of another way to pull it together.

A couple of things to note:
1. I have indicated the Oversight Council will meet on a Monday to discuss tasking questions. Obviously this day may change depending on the outcome of your Doodle Poll. However, a Monday meeting does allow time for the questions to be circulated to working groups at least one week before their meetings
2. There is no need for a meeting next week, as the working groups are currently working through the first set of questions you have tasked them with
3. The Diagnosis, Support and Services working group have requested fortnightly meetings, so you will see they are on a slightly different timeline
4. There is a three week period in December/January to hopefully allow people to have a bit of a break. We can adjust this as needed
5. Once we settle the Oversight Council meeting date for December things might need to move slightly
6. I have included working groups meetings up until February. This doesn’t mean the working groups will cease in February
7. Once the draft Strategy is out for public consultation, the Oversight Council will still task the working groups based on feedback we are receiving from this round of consultation.

I have also included (attached) the first report for the Social Deck. I thought we had previously circulated this, but apologies if I missed that. DSS should be receiving the second report shortly.

Any questions please let me know. Hopefully I have addressed DSS actions below.

Regards
`redacted: s47F - pe`

`redacted: s47F - personal privacy` (she/her)
Director
Autism Policy • Disability Support Branch

Ngunnawal Country

E `redacted: s47F - personal privacy`
P `redacted: s47F - personal privacy` • M `redacted: s47F - personal privacy`

Note: I work flexibly, Monday – Thursday. I have sent you this message because it’s a good time for me. I do not expect you to read, respond or action it outside your regular hours

From: `redacted: s47F - personal privacy`
Sent: Friday, 13 October 2023 6:42 PM
To: `redacted: s47F - personal privacy` MANSFIELD, Luke `redacted: s47F - personal privacy` ; National Autism Strategy Secretariat <xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx@xxx.xxx.xx>

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Cc: `redacted: s47F - personal privacy`

Subject: Re: FOR ACTION PLS: Early actions from 26 September Oversight Council meeting [SEC=OFFICIAL]

Good Afternoon Team,

I am writing to you all to provide a summary of the meeting we held earlier this week to discuss questions and more importantly the process for tasking the Working Groups, including incorporating the Social Deck community engagement reports to help shape and prioritise questions.

In attendance we had some of the NAS Oversight Council Community and Government Representatives.

It has been proposed as a refinement of the process to help us meet the Working Group Tasking commitment and keep momentum going that:

1. NASOC Government and Community Reps have ONE standing meeting of 45 minutes to develop/ refine questions for all 3 working groups. A standing meeting forces us to take the time out and ensure we are responsive and timely. Currently relying on resolving things through GovTeams is problematic given the many competing priorities including a number of parties are deeply involved with DRC Report review and NDIS Review.

2. The meeting will be at least half way (if not sooner between working group meetings) that way :
   * to receive and review the regular Social Deck Community Engagement feedback information drops;
   * to craft and/or refine questions as a group and identify prereading materials;
   * for relevant NASOC working group members (who have nominated) to have a standing meeting with the respective Working Group's Co-chairs shortly after to share and socialise the questions, refine as appropriate and take into consideration feedback/ lessons learnt from the prior Working Group session
   * for finalised questions and pre reading materials to be made available to working group members so they have approx a week to review.
   and then the cycle continues.

**ACTIONS FOR DSS:** to achieve the above can we please have asap so we can schedule the relevant meetings:
* a schedule of the working group meetings (last known to have 2-3 week intervals) - preference would be 2.5 to 3 weeks from the last working group meeting for each respective working group) at least for the next meeting to get it right. (Note: Apologies if this exists and I have missed it).
* provision of the Social Deck Community Engagement feedback information drops available to DSS to date (if they have been loaded on Govea's it would be helpful to receive an alert from the NAS Secretariat).

**ACTIONS FOR NASOC REPS:**
* if I have missed anything from the meeting feel free for anyone to add in

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* please respond to the Doodle Poll I will send out in anticipation as I am guessing for this to be effective we need to meet next week unless I have missed the schedule ?

Thanks in advance.

Kind regards
`redacted: s47F - personal`

`redacted: s47F - personal privacy`
Co-Chair, Australian Autism Alliance
M: `redacted: s47F - personal privacy` | E: `redacted: s47F - personal privacy` | chair@australianautismalliance.org.au

From: `redacted: s47F - personal privacy`
Sent: Tuesday, October 10, 2023 7:50 AM
To: National Autism Strategy Secretariat <xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx@xxx.xxx.xx>; `redacted: s47F - personal privacy`
Cc: `redacted: s47F - personal privacy`
Subject: Re: FOR ACTION PLS: Early actions from 26 September Oversight Council meeting [SEC=OFFICIAL]

Dear `redacted: s47F - per` / All,

Please find attached identified questions for the purpose of tasking the working groups, noting we have a meeting early this morning to discuss further, including with our NASOC Government representative colleagues.

Also we have identified in the document the proposed question for the Diagnosis, Services and Supports Working Group for their meeting this coming Thursday 12th October 23.

Please do not hesitate to contact us with any queries.

Kind regards

NASOC Community Reps

`redacted: s47F - personal privacy` (she/her)
Co-Chair, Australian Autism Alliance
M: `redacted: s47F - personal privacy` | E: `redacted: s47F - personal privacy` | chair@australianautismalliance.org.xx

5
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From: National Autism Strategy Secretariat <Naxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx@xxx.xxx.xx>
Sent: Thursday, September 28, 2023 12:35 PM
To: `redacted: s47F - personal privacy`
Cc: National Autism Strategy Secretariat <xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx@xxx.xxx.xx>; `redacted: s47F - personal privacy` Autism Policy <xxxxxxxxxxxx@xxx.xxx.xx>
Subject: FOR ACTION PLS: Early actions from 26 September Oversight Council meeting [SEC=OFFICIAL]

Hello Oversight Council

Apologies for the delay in sending this email. With delayed planes and changes to travel, yesterday did not go to plan for me.

Below is the agreed first set of actions from the meeting on Tuesday 16 September:

| Number | Action | Outcome |
|---|---|---|
| 1. | Circulate the proposed first tasking questions for the working groups | Draft questions attached for comment by Monday 9 October 2023 |
| 2. | Circulate further information on organisations DSS have been engaging with as part of the consultation | To be circulated on Friday 29 September 2023.<br><br>A regular report on all consultation and engagement events will now be sent to you every Friday |
| 3. | a. Summarise the discussion on the guiding principles for Oversight Council input.<br>b. Oversight Council to provide up to 3 draft vision statements for review | Paper attached summarising the guiding principle discussion and seeking input for the vision statement. Council to respond by Monday 9 October<br><br>Please note this co-drafting process is ongoing. |
| 4. | Oversight Council to provide any comments or amendments to the draft National Autism Strategy Framework. | Paper attached. Council to provide feedback by Monday 9 October |

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| 5. | Circulate the working group members and the Terms of Reference. | Attached<br>For your information only. No further action required |

A full list of actions from the meeting , and key decisions, will be circulated shortly. We will also send a poll for preferred meeting dates and times for the November and December Oversight Council meetings and the updated Oversight Council work plan.

Again, apologies for the delay in getting this information to you.

Thanks
`redacted: s47F - pe`

`redacted: s47F - personal privacy` (she/her)
Director
Autism Policy • Disability Support Branch
E `redacted: s47F - personal privacy`
P `redacted: s47F - personal privacy` • M `redacted: s47F - personal privacy`

Ngunnawal Country. PO Box 9820 Canberra, ACT 2601

Note: I work flexibly, Monday – Thursday. I have sent you this message because it’s a good time for me. I do not expect you to read, respond or action it outside your regular hours.

The Department of Social Services acknowledges the Traditional Owners of Country throughout Australia, and their continuing connection to land, water and community. We pay our respects to them and their cultures, and to Elders both past and present.

7
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DOCUMENT 9.1

FOI 24/25-1567

| Monday, 16 October 2023 | Tuesday, 17 October 2023 | Wednesday, 18 October 2023 | Thursday, 19 October 2023 | Friday, 20 October 2023 |
|---|---|---|---|---|
| | | | | |
| Monday, 23 October 2023 | Tuesday, 24 October 2023 | Wednesday, 25 October 2023 | Thursday, 26 October 2023 | Friday, 27 October 2023 |
| | Economic Inclusion Working Group 3-5pm<br>(Considering 1st set of questions) | Social Inclusion Working Group 2-4pm<br>(Considering 1st set of questions) | Diagnosis Supports & Services Working Group 2-4pm<br>(Considering 1st set of questions) | |
| Monday, 30 October 2023 | Tuesday, 31 October 2023 | Wednesday, 1 November 2023 | Thursday, 2 November 2023 | Friday, 3 November 2023 |
| Oversight Council meet to agree second set of tasking questions for Working Groups | | | Oversight Council meeting | |
| Monday, 6 November 2023 | Tuesday, 7 November 2023 | Wednesday, 8 November 2023 | Thursday, 9 November 2023 | Friday, 10 November 2023 |
| | | | Diagnosis Supports & Services Working Group 2-4pm<br>(Considering 1st set of questions) | |
| Monday, 13 November 2023 | Tuesday, 14 November 2023 | Wednesday, 15 November 2023 | Thursday, 16 November 2023 | Friday, 17 November 2023 |
| | Economic Inclusion Working Group 3-5pm<br>(Considering 2nd set of questions) | Social Inclusion Working Group 2-4pm<br>(Considering 2nd set of questions) | | |
| Monday, 20 November 2023 | Tuesday, 21 November 2023 | Wednesday, 22 November 2023 | Thursday, 23 November 2023 | Friday, 24 November 2023 |
| Oversight Council meet to agree third set of tasking questions for Working Groups | | | Diagnosis Supports & Services Working Group 2-4pm<br>(Considering 2nd set of questions) | |
| Monday, 27 November 2023 | Tuesday, 28 November 2023 | Wednesday, 29 November 2023 | Thursday, 30 November 2023 | Friday, 1 December 2023 |
| | | | | |

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| Monday, 4 December 2023 | Tuesday, 5 December 2023 | Wednesday, 6 December 2023 | Thursday, 7 December 2023 | Friday, 8 December 2023 |
|---|---|---|---|---|
| | | Social Inclusion Working Group 2-4pm<br>(Considering 3rd set of questions) | Economic Inclusion Working Group 3-5pm<br>(Considering 3rd set of questions) | |
| Monday, 11 December 2023 | Tuesday, 12 December 2023 | Wednesday, 13 December 2023 | Thursday, 14 December 2023 | Friday, 15 December 2023 |
| | | | Diagnosis Supports & Services Working Group 2-4pm<br>(Considering 3rd set of questions) | |
| Monday, 18 December 2023 | Tuesday, 19 December 2023 | Wednesday, 20 December 2023 | Thursday, 21 December 2023 | Friday, 22 December 2023 |
| | | | | |
| Monday, 25 December 2023 | Tuesday, 26 December 2023 | Wednesday, 27 December 2023 | Thursday, 28 December 2023 | Friday, 29 December 2023 |
| | | | | |
| Monday, 1 January 2024 | Tuesday, 2 January 2024 | Wednesday, 3 January 2024 | Thursday, 4 January 2024 | Friday, 5 January 2024 |
| | | | | |
| Monday, 8 January 2024 | Tuesday, 9 January 2024 | Wednesday, 10 January 2024 | Thursday, 11 January 2024 | Friday, 12 January 2024 |
| Oversight Council meet to agree fourth set of tasking questions for Working Groups | | | | |
| Monday, 15 January 2024 | Tuesday, 16 January 2024 | Wednesday, 17 January 2024 | Thursday, 18 January 2024 | Friday, 19 January 2024 |
| | Economic Inclusion Working Group 3-5pm<br>(Considering 4th set of questions) | Social Inclusion Working Group 2-4pm<br>(Considering 4th set of questions) | Diagnosis Supports & Services Working Group 2-4pm<br>(Considering 4th set of questions) | |
| Monday, 22 January 2024 | Tuesday, 23 January 2024 | Wednesday, 24 January 2024 | Thursday, 25 January 2024 | Friday, 26 January 2024 |
| Oversight Council meet to agree fifth set of tasking questions for Working Groups | | | | |

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| Monday, 29 January 2024 | Tuesday, 30 January 2024 | Wednesday, 31 January 2024 | Thursday, 1 February 2024 | Friday, 2 February 2024 |
|---|---|---|---|---|
| | Economic Inclusion Working Group 2-4pm<br>(Considering 5th set of questions) | Social Inclusion Working Group 2-4pm<br>(Considering 5th set of questions) | Diagnosis Supports & Services Working Group 2-4pm<br>(Considering 5th set of questions) | |

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DOCUMENT 10

FOI 24/25-1567

From: National Autism Strategy Secretariat <NationalAutismStrategySecretariat@dss.gov.au>

Sent: Friday, 20 October 2023 8:50 AM

To: MANSFIELD, Luke; `redacted: s47F - personal privacy`

Cc: `redacted: s47F - personal privacy` Autism Policy

Subject: For Noting: National Autism Strategy engagement statistics at 19 October 2023 [SEC=OFFICIAL]
Attachments: National Autism Strategy Engagement Stats @ 19 October 2023.docx

Importance: High

Hello Oversight Council members,

Please find attached for your noting the National Autism Strategy engagement statistics report for the week ending 20 October 2023. We will continue to send you these weekly engagement updates on a Friday.

Cheers

`redacted: s47F - personal privacy`

Stakeholder Engagement • National Autism Strategy

E `redacted: s47F - personal privacy`
M `redacted: s47F - personal privacy`

Note: | work flexibly. | have sent you this message because it’s a good time for me. | do not expect you to read, respond or action it outside your regular hours.

The Department of Social Services acknowledges the traditional owners of Country throughout Australia, and their continuing connection to land, water and community. We pay our respects to them and their cultures, and to Elders both past and present.

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DOCUMNT 10.1

FOI 24/25-1567

> [Image not converted to Markdown -- "Australian Government National Autism Strategy logo" -- check the source PDF page for the actual content]

# National Autism Strategy Engagement Stats @ 19 October 2023

### Public Consultations

| Event Name | Date | Registered | Capacity |
|---|---|---|---|
| Cairns - Autistic Voices forum | 24/10/23 | 7 | 20 |
| Cairns - Community Forum | 24/10/23 | 33 | 60 |
| Mature & Older Autistic Persons online focus group 2 | 25/10/23 | TBA | 20 |
| Brisbane - Autistic Voices forum | 26/10/23 | 20 | 20 |
| Brisbane - Community Forum | 26/10/23 | 59 | 70 |
| Brisbane - Autistic Voices forum 2 | 26/10/23 | 15 | 20 |
| Lismore - Autistic Voices forum | 27/10/23 | 9 | 20 |
| Lismore Community Forum | 27/10/23 | 21 | 60 |

### Communications

#### Communications from DSS Engage Page

| | |
|---|---|
| NAS Mailing List Subscriptions | 762 |

#### Communications from Autism Policy Mailbox * please see footnote

| | |
|---|---|
| NAS Mailing List | 271 |
| Total email subscriptions | 1033 |

### Submissions

| | |
|---|---|
| Submissions since 5 October | Total |
| Responses to the guided questionnaire | 304 |
| Submissions | 17 |

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DOCUMENT 11

From: National Autism Strategy Secretariat <NationalAutismStrategySecretariat@dss.gov.au>

Sent: Friday, 20 October 2023 1:39 PM

To: MANSFIELD, Luke; `redacted: s47F - personal privacy`

Cc: `redacted: s47F - personal privacy`

Subject: For review and comment: National Autism Strategy Oversight Council draft 2 November virtual meeting agenda [SEC=OFFICIAL]

Attachments: National Autism Strategy Oversight Council meeting agenda — virtual meeting 2 November 2023 _DRAFT (D23 1133891).DOCX

Hello Oversight Council members

Thank you for confirming your availability to attend the sixth virtual Oversight Council meeting on Thursday 2 November 2023 (10 am to 5 pm AEDT; 9 am —4 pm (Brisbane); 9:30 am — 4:30 pm (Adelaide); 7 am —2 pm (Perth); and 8:30-3:30 pm (Darwin).

Attached is the draft meeting agenda for your input and comment by COB Wednesday 25 October 2023.

Please provide your feedback on the agenda to the secretariat on the Oversight Council GovTEAMS site at National Autism Strategy Oversight Council meeting agenda — virtual meeting 2 November 2023 DRAFT (D23 1133891).DOCX or by email at NationalAutismStrategySecretariat@dss.gov.au. My apologies for the shorter than usual notice.

Please contact the secretariat if you have any accessibility or support needs for this meeting.

Kind regards

`redacted: s47F - personal privacy`

`redacted: s47F - personal privacy` (she/her)

Director

Autism Policy * Disability Support Branch

`redacted: s47F - personal privacy`

`redacted: s47F - personal privacy` M `redacted: s47F - personal privacy`

Ngunnawal Country. PO Box 9820 Canberra, ACT 2601

Note: | work flexibly, Monday — Thursday. | have sent you this message because it’s a good time for me. | do not expect you to read, respond or action it outside your regular hours.

KNOW YOUR COUNTRY

THIS EMAIL COMES TO YOU FROM

NGUNNAWAL COUNTRY

> The Department of Social Services acknowledges the Traditional Owners of Country throughout Australia, and their continuing connection to land, water and community. We pay our respects to them and their cultures, and to Elders both past and present.

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DOCUMENT 11.1

OFFICIAL

FOI 24/25-1567

## National Autism Strategy Oversight Council – meeting agenda

| Forum and theme | National Autism Strategy Oversight Council <br><br> Topic: Drafting the National Autism Strategy and working group key outcomes | Location | Microsoft Teams – Microsoft Teams link to the 2 November meeting <br><br> Please contact the National Autism Strategy Secretariat if you need additional IT support |
| --- | --- | --- | --- |
| Date | Thursday 2 November 2023 | Time | 10 am – 5 pm (AEDT); 9 am – 4 pm (AEDT – Brisbane); <br> 9:30 am – 4:30 pm (ACDT – Adelaide); <br> 7 am – 2 pm (AWST – Perth); and 8:30–3:30 pm (ACST – Darwin) |
| Council co-chairs | • Clare Gibellini <br> • Luke Mansfield | Minutes | Key decision points and action items only to be recorded by the Department of Social Services secretariat support staff |

**Legend:**
- National Autism Strategy (NAS)
- Department of Social Services (DSS)
- Terms of Reference (ToRs)
- Oversight Council (the Council)

**Stakeholders**
Any one of or combined: NAS Oversight Council; DSS; Australian Government; Minister for Social Services; state and territory government(s), Autistic and Autism Community; Working Groups, National Roadmap to Improve the Health and Mental Health of Autistic People Working Group; The Social Deck.

**Purpose of the meeting**
This meeting is for the Oversight Council to identify content and prioritise areas for action to guide drafting of the preliminary National Autism Strategy. The meeting discussion will focus on the:
- review of working group outcomes
- tasking the working groups with further priority actions and topics for research and reporting back to the Council

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- determine the structure and content of the preliminary NAS, including how to incorporate the following findings in the draft Strategy:
  - early findings of the national community consultations/community feedback
  - the key outcomes of the working groups
  - the draft structure of the NAS based on the Council’s feedback.

### Breakout sessions for Oversight Council members – standing item

Oversight Council members to hold a breakout session where the Council members split into three groups/the DSS-led working groups’ focus areas (social inclusion; economic inclusion; and diagnosis, supports and services) to explore the information received from The Social Deck, and develop themes for the Strategy and next tasks for the working groups.

The three Council breakout groups return to the main Council group, provide a summary of their discussions, hear an update on the National Roadmap to Improve the Health and Mental Health of Autistic People Working Group and identify any intersectional issues/implications. This allows time for discussions and questions with all Council members.

### Pre-reading in order of priority to read as necessary for agenda items 1, 2, 3, 4a and 4b, 5 and 6:

The following 12 documents were prepared by the DSS NAS Secretariat and are to be sent by the Secretariat to Oversight Council members in the updated 2 November meeting invite on ## October 2023.

**Agenda item 1: Welcome and meeting overview:**
1. The final 2 November 2023 meeting agenda, incorporating Council members’ changes provided on ## October 2023.
2. What to expect from the Oversight Council 2 November meeting guide.

**Agenda item 2: National consultations and community engagement events update:**
3. Update on the national consultations (finished on 30 October 2023) with early findings and statistics of the community engagement and consultations – at ## October 2023

**Agenda item 3: Group breakout sessions to discuss initial national consultation findings, themes for the NAS and tasking of the working groups**
4. Update on the national consultations (finished on 30 October 2023) with early findings and statistics of the community engagement and consultations – at ## October 2023 (same as document 3 above).
5. Paper reporting on Social Inclusion; Economic Inclusion; and Diagnosis, Supports and Services working group outcomes – an update on research and findings on the topics and issues tasked by the Council.
6. Paper: proposed priority topics and questions for working groups to research and report back to the Council.

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7. Tasking of the Social Inclusion; Economic Inclusion; and Diagnosis, Supports and Services Working Groups.

**Agenda item 4: Main Council discussion on preliminary national consultation findings, themes for the preliminary NAS and tasking of the working groups**

Nil papers for agenda item 4.

**Agenda item 5: Update from the National Roadmap to Improve the Health and Mental Health of Autistic People Working Group**

8. PowerPoint presentation: An update from `redacted: s47F - personal privacy`, the Department of Health and Aged Care member of the Council, on the progress of the National Roadmap to Improve the Health and Mental Health of Autistic People Working Group.
9. Autism CRC PowerPoint presentation on the co-design process for the National Roadmap national consultations.

**Agenda item 6: Structure and content of the preliminary NAS**

10. Continue to refine the draft potential National Autism Strategy structure (a diagram prepared by DSS based on the 31 August workshop outcomes and updated with the Oversight Council members’ insights).
11. Paper: vision statement and guiding principles for the NAS (incorporating Council members’ feedback).
12. Paper: summary of interconnected national and state and territory strategies and plans.

**Additional documents provided to support agenda item ## that CAN BE read for the meeting BUT DO NOT have to be read:**

The following documents will be sent by the Secretariat to the Oversight Council in the updated 2 November meeting invite on ## October 2023:

13. ##this section can be completed following the Council’s feedback on this draft agenda##

**Additional documents provided but NOT to be read for the meeting**

Nil

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| Aligned to Terms of Reference item | Agenda item | Time | Duration | Lead | Action | Verbal/ paper | Purpose/outcome |
| --- | --- | --- | --- | --- | --- | --- | --- |
| • Purpose of Oversight Council <br><br> • Meeting frequency and format <br><br> • Membership | **Agenda item 1: Welcome and meeting overview** <br><br> a) Acknowledgement of Country <br><br> b) Welcome and apologies <br><br> c) Meeting overview | 10–10:10 am | 10 minutes | Co-chairs: Clare Gibellini and Luke Mansfield | Members to note | Verbal | — |
| • Purpose of the Council <br><br> • Phased development of the Strategy <br><br> • Priorities and work program | **Agenda item 2: National consultations and engagement events** <br><br> • Update on engagement activities, including early findings, themes and statistics to inform Council breakout group discussions at agenda item 3. | 10:10–10:30 am | 20 minutes | Clare Gibellini and Luke Mansfield | Members to discuss and note | Paper: Community engagement and consultations update – ## October 2023 | Council is informed of the early findings, including themes, of the community engagement activities which closed on 30 October 2023 |

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| Aligned to Terms of Reference item | Agenda item | Time | Duration | Lead | Action | Verbal/ paper | Purpose/outcome |
| --- | --- | --- | --- | --- | --- | --- | --- |
| • Purpose of the Council <br><br> • Phased development of the Strategy <br><br> • Priorities and work program <br><br> • Working groups | **Agenda item 3: Group breakout sessions to discuss initial national consultation findings, themes for the NAS and tasking of the working groups** <br><br> • Council members split into three DSS-led working groups’ focus areas (social inclusion; economic inclusion; and diagnosis, supports and services) to explore the preliminary consultation findings from The Social Deck, and develop themes for the NAS and next tasks for the working groups. <br><br> • Review updates/reports on the progress of the working groups. <br><br> • Identify priority actions to task the working groups. | 10:30–11:40 am | 70 minutes | Clare Gibellini and Luke Mansfield | Members to discuss and workshop | Paper: Community engagement and consultations update – ## October 2023 <br><br> Paper reporting on working group outcomes <br><br> Paper: Proposed priority topics and questions for working groups to research <br><br> Paper: Tasking of the working groups | The Council identifies themes and priority actions from the initial national consultation findings and working group research outcomes for populating the draft NAS <br><br> Identify proposed priority topics for research and priority actions for tasking the working groups to complete in November 2023 |
| — | **20-minute break** | 11:40 am – 12 pm | 20 minutes | — | — | — | — |

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| Aligned to Terms of Reference item | Agenda item | Time | Duration | Lead | Action | Verbal/ paper | Purpose/outcome |
| --- | --- | --- | --- | --- | --- | --- | --- |
| • Purpose of the Council <br><br> • Phased development of the Strategy <br><br> • Priorities and work program <br><br> • Working groups | **Agenda item 4: Main Council discussion on preliminary national consultation findings, themes for the preliminary NAS and tasking of the working groups** <br><br> • The three Council breakout groups return to the main Council group, provide a summary of the groups’ findings. | 12–1:10 pm | 70 minutes | Clare Gibellini and Luke Mansfield | Members to discuss and main Council to workshop findings | Verbal | The Council identifies themes and priority actions from the preliminary national consultation findings and working group findings for populating the draft NAS <br><br> Tasking priority actions to the working groups to complete in November 2023 <br><br> The Council identifies proposed priority action areas for the preliminary NAS |
| — | **40-minute lunch break** | 1:10–1:50 pm | 40 minutes | — | — | — | — |

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| Aligned to Terms of Reference item | Agenda item | Time | Duration | Lead | Action | Verbal/ paper | Purpose/outcome |
| --- | --- | --- | --- | --- | --- | --- | --- |
| • Purpose of the Council <br><br> • Phased development of the Strategy <br><br> • Priorities and work program <br><br> • Working groups | **Agenda item 5: Update from the National Roadmap to Improve the Health and Mental Health of Autistic People Working Group** <br><br> • Update on the progress of the National Roadmap to Improve the Health and Mental Health and Autistic People Working Group <br><br> • Presentation by the Autism CRC on the co-design process for the National Roadmap national consultations <br><br> • Identify any intersectional issues and implications with the preliminary NAS. <br><br> • Additional time for questions and answers from all Council members. | 1:50–2:30 pm | 40 minutes | Clare Gibellini and Luke Mansfield <br><br> `redacted: s47F - personal privacy` or Department of Health and Aged Care representative to provide an National Roadmap Health Working Group update <br><br> Autism CRC presenters: Cheryl Mangan and team | Council members note and discuss | PowerPoint presentation: Progress of the National Roadmap to Improve the Health and Mental Health of Autistic People Working Group <br><br> Autism CRC PowerPoint presentation on the co-design process for the National Roadmap national consultations | The Council identifies intersectional issues and areas for alignment, such as priority action areas in the health and mental health sectors, in the National Roadmap and the NAS to guide the drafting of the NAS in November 2023 |
| — | **10-minute break** | 2:30–2:40 pm | 10 minutes | — | — | — | — |
| • Purpose of Oversight Council <br><br> • Timeframe of the Council <br><br> • Priorities and work program | **Agenda item 6: Structure and content of the preliminary NAS** <br><br> • Endorse the draft vision statement and guiding principles provided by Council members. | 2:40–3:40 pm | 60 minutes | Clare Gibellini and Luke Mansfield | Members to discuss, note and endorses | Paper: Continue to refine the draft potential National Autism Strategy structure (a diagram prepared by DSS | Endorse the vision statement and guiding principles for populating in the draft Strategy <br><br> The Council provides guidance on the |

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| Aligned to Terms of Reference item | Agenda item | Time | Duration | Lead | Action | Verbal/ paper | Purpose/outcome |
| --- | --- | --- | --- | --- | --- | --- | --- |
| • Phased development of the Strategy | • Determine the structure and content of the preliminary NAS (further to the meeting morning workshops) to guide drafting of the NAS in November 2023, including: <br><br> o preferred language for a human rights-based NAS <br><br> o vision statement and guiding principles <br><br> o priority themes and actions from initial national consultation findings/community feedback <br><br> o key findings of the DRC Report and NDIS Review for <br><br> o working group key focus area outcomes <br><br> o consider and align with interconnected strategies and plans, including Australia’s Disability Strategy 2021–2031; National Agreement on Closing the Gap; Senate Committee on Autism Report; Victorian and South Australian Government Autism Strategies; Early Years Strategy (in development) etc. | | | | | based on the 31 August workshop outcomes with the Oversight Council members’ insights). <br><br> Paper: vision statement and guiding principles for the NAS (incorporating Council members’ feedback) <br><br> Paper: summary of interconnected national and state and territory strategies and plans | structure and content of the NAS for drafting the NAS in November 2023. |
| — | **10-minute break** | 3:40–3:50 pm | 10 minutes | — | — | — | — |

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| Aligned to Terms of Reference item | Agenda item | Time | Duration | Lead | Action | Verbal/ paper | Purpose/outcome |
| --- | --- | --- | --- | --- | --- | --- | --- |
| • Purpose of Oversight Council <br><br> • Timeframe of the Council <br><br> • Priorities and work program <br><br> • Phased development of the Strategy | **Agenda item 7: ## for Council members to populate** | 3:50–4:35 pm | 45 minutes | Clare Gibellini and Luke Mansfield | Members to discuss and ## | Verbal or paper TBC | TBC when Council members provide an agenda item |
| • Meeting frequency and format <br><br> • Priorities and work program <br><br> • Phased development of the Strategy <br><br> • NAS Secretariat | **Agenda item 8: Planning for next meeting:** <br><br> • Planning and themes for the next in-person Council meeting in Canberra scheduled for Tuesday 12 December (10 am – 6 pm), including a post-meeting social event <br><br> • Proposed meeting topics include: <br><br> o review of the draft NAS before it is released for public consultation <br><br> o the Council reporting to the Hon Amanda Rishworth MP, Minister for Social Services, on the progress of the working groups and draft Strategy to be released for public consultation. | 4:35–4:45 pm | 10 minutes | Clare Gibellini and Luke Mansfield | Members to note and discuss | Verbal | Council members determine possible agenda items for next Council meeting |

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| Aligned to Terms of Reference item | Agenda item | Time | Duration | Lead | Action | Verbal/ paper | Purpose/outcome |
| --- | --- | --- | --- | --- | --- | --- | --- |
| • Meeting frequency and format <br><br> • Priorities and work program <br><br> • Phased development of the Strategy <br><br> • NAS Secretariat | **Agenda item 9: Other business and meeting closure** <br><br> • Members to raise other business – Review: reflections of lessons to date and any adjustments that need to be made <br><br> • Summary of actions and next meeting, including scope for the Hon Amanda Rishworth MP, Minister for Social Services, to attend for an update on the NAS development. | 4:45–5 pm | 15 minutes | Clare Gibellini and Luke Mansfield | Members to note/raise other business | Verbal | — |

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Acknowledgements

Introduction

Introduction

Background

Guiding principles for engaging with autistic people with an intellectual disability

Different people will need to give feedback in different ways

The intersection of autism and intellectual disability is a multifaceted experience with compounding impacts

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Ensuring Service Provider and System Non-Involvement in Consultations

Who does the National Autism Strategy consultation process need to reach?

How can the Strategy consultation process reach autistic people with an intellectual disability?

Priority cohorts

People with high support needs or complex disability

Suggested approach

People who have contact with restricted settings like hospitals, the justice system, and

Suggested approach

People living in group homes who may not have access to informal supports

Suggested approach

How to get good information from autistic people with an intellectual disability, their families, and their support people

What does the Strategy consultation process need to hear about?

Communication

Risks and safety

Choice and control

Housing

Education

Transition from school and employment

Diagnosis and dual diagnosis

Mental health

FOR 21-29:756

System interactions

Transition from home

People who have not transitioned from home

Overview questions

In addition to skilled facilitation, we also recommend employing co-facilitators with lived experience.

Tools of the trade: documents, prompts, and consistency

Future directions—what comes next?

Specific investment in a dataset on the prevalence of autism and intellectual disability together

Representation of autistic people with intellectual disability – including those with complex communication and/or support needs

Family and Informal Supports

Conclusion

FPDN Community Consultation

Acknowledgements

Table of Contents

Executive summary

Additional supports

About FPDN

1. Introduction

2. Method

FOI 24/25-1567

2.1 Scoping review

The databases searched were:

Figure 1: Scoping review method

2.2 Interviews

2.3 The survey

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Table 2: Age range of survey respondents

Geographical Locations

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3. Scoping review

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3.1 Disadvantage

3.2 Misdiagnosis and delayed diagnosis

3.3 Access to services