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From: National Autism Strategy Secretariat NationalAutismStrategySecretariat@dss.gov.au Sent: Wednesday, 2 August 2023 2:13 PM To: redacted: s47F - personal privacy; Taylor, Samantha Cc: redacted Subject: FOR INFORMATION AND COMPLETION PLEASE: National Autism Strategy Oversight Council background information and Council membership pack for Samantha Taylor [SEC=OFFICIAL:Sensitive]

Attachments: FOR INFORMATION: Final National Autism Strategy Oversight Council Terms of Reference [SEC=OFFICIAL]; FOR CONSIDERATION AND COMMENT: National Autism Strategy Oversight Council draft 16 August 2023 meeting agenda; Autism CRC research and community insights reports; and draft update for the Oversight Council website [SEC=OFFICIAL:Sensitive]; Research papers from selected Disability Representative Organisations for discussion at the 16 August meeting and the Autism CRC response to a Council member’s question [SEC=OFFICIAL]; National Autism Strategy Oversight Council membership pack — Australian Government members (D23 788384).DOCX; National Autism Strategy Oversight Council membership list at 7-8-23.DOCX

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:

• 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 NationalAutismStrategySecretariat@dss.gov.au 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

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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 NationalAutismStrategySxxxxxxxxxx@xxx.xxx.xx Subject: RE: FOR CONFIRMATION PLEASE: Samantha Taylor attending the National Autism Strategy Oversight Council redacted: s47F - personal privacy in person meeting on behalf of [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 .

redacted: s47F - peWarm Regards

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 redacted: s47F - personal privacy in person meeting on behalf of [SEC=OFFICIAL]

Good morning redacted: s47F - p

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.

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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 redacted: s47F - personal privacy of Social Services redacted: s47F - personal privacy 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)

********************************************************************** 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 **********************************************************************

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DOCUMENT 1.1

From: National Autism Strategy Secretariat NationalAutismStrategySecretariat@dss.gov.au Sent: Thursday, 27 July 2023 5:48 PM To: MANSFIELD, Luke; redacted: s47F - personal privacy redacted redacted redacted Cc: National Autism Strategy Secretariat; Autism Policy Subject: FOR INFORMATION: Final National Autism Strategy Oversight Council Terms of Reference [SEC=OFFICIAL] Attachments: National Autism Strategy Oversight Council Terms of Reference_FINAL D23 430955.DOCX

Oversight Council Members

Please find attached the ratified Terms of Reference for the Oversight Council.

As agreed at our last meeting on 3 July 2023, the Terms of Reference were circulated for one last opportunity to reflect any ‘show stopping’ changes. Following this, Clare and myself, as co-chairs, have finalised the Terms of Reference. Thank you to everyone for their carefully considered input. We look forward to working with you on the important substantive next phases of our work: hearing from the autistic community and designing the components of the strategy.

Regards

Luke and Clare

Luke Mansfield (He/Him) Group Manager, Disability Strategy Group Gender Equality Network Champion Department of Social Services

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. 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

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DOCUMENT 1.1.1

Australian Government

Department of Social Services

National Autism Strategy Oversight Council

Terms of Reference

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DOCUMENT 1.2

From: National Autism Strategy Secretariat NationalAutismStrategySecretariat@dss.gov.au Sent: Monday, 24 July 2023 5:34 PM To: MANSFIELD, Luke; redacted: s47F - personal privacy redacted redacted redacted redacted Cc: National Autism Strategy Secretariat; Autism Policy; redacted: s47F - personal privacy Subject: FOR CONSIDERATION AND COMMENT: National Autism Strategy Oversight Council draft 16 August 2023 meeting agenda; Autism CRC research and community insights reports; and draft update for the Oversight Council website [SEC=OFFICIAL:Sensitive] Attachments: Community_insights_and_unheard_perspectives.pdf; Research_evidence_policy_and_landscape_mapping_to_inform_the_National_Autism_Strategy_Appendices.pdf; Research_evidence_policy_and_landscape_mapping_to_inform_the_National_Autism_Strategy_Final_Report.pdf; National Autism Strategy Oversight Council meeting agenda — in-person meeting 16 August 2023 DRAFT (D23 773478).DOCX; Oversight Council Update post 03072023 meeting website update_Fos circulation to OSC (D23 785526).DOCX Importance: High

Hello Oversight Council members

Thank you for confirming your availability to attend the fourth Oversight Council meeting on Wednesday 16 August 2023 (10 am to 5 pm AEST) at the Department of Social Services office in Tuggeranong, Canberra.

To provide you with sufficient time to prepare for this meeting, we are sharing the draft meeting agenda and two Autism CRC research and community insights reports for the Council’s input and consideration.

1. Draft 16 August Oversight Council 16 August meeting agenda

Attached is the draft Oversight Council meeting agenda for your review and comment by COB Tuesday 1 August 2023. Please return your comments and input (in tracked changes) to the National Autism Strategy Secretariat by email at NationalAutismStrategySecretariat@dss.gov.au. You can also add your input and comments to the draft agenda on the Oversight Council GovTEAMS site at National Autism Strategy Oversight Council meeting agenda in-person meeting 16 August 2023 DRAFT (D23 773478).DOCX (sharepoint.com).

2. Autism CRC research and community insights reports

In preparation for the Oversight Council meeting, attached are two Autism CRC research and community insights reports (with appendices) for pre-reading. These reports will be discussed at the 16 August meeting.

• Community insights and unheard perspectives: Recommendations for inclusive community engagement in the National Autism Strategy (June 2023)
• Research evidence, policy and landscape mapping to inform the National Autism Strategy final report (June 2023)
  • Research evidence, policy and landscape mapping to inform the National Autism Strategy appendices (June 2023).

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3. Remuneration of your time spent preparing for Oversight Council meetings and other Oversight Council business

To ensure timely remuneration of your work in preparing for this meeting (with the considerable attached reading material) and for other Oversight Council business, we encourage you to record your time spent on this work and submit invoices to the Secretariat by email at NationalAutismStrategySecretariat@dss.gov.au as soon as you are able to do so. The Secretariat will support and work with you individually for a smooth remuneration process.

4. National Autism Strategy Oversight Council website update about the 3 July 2023 meeting

Attached is the draft update to the National Autism Strategy Oversight Council | Department of Social Services, Australian Government (dss.gov.au) webpage following the 3 July Oversight Council meeting. Would you please review this webpage draft update and confirm your agreement or provide feedback (in tracked changes) to the secretariat at NationalAutismStrategySecretariat@dss.gov.au by COB Tuesday 1 August 2023.

5. Secretariat staffing change

We recently welcomed redacted: s47F - personal privacy, Policy Officer, to the Secretariat team. redacted: s47F - personal privacy will assist with secretariat administration as redacted: s47F - personal privacy moves into the policy-focussed work of the Autism Policy Section. We thank redacted: s47F - personal privacy for her work and support in the secretariat space. redacted: s47F - personal privacy will progress with the administrative arrangements for the upcoming meetings and support the Oversight Council, including with accessibility needs and supports. redacted: s47F - personal privacy will also manage the travel and accommodation bookings and remuneration of non-government Council members for their time spent on Oversight Council business.

The minutes from the 3 July meeting will be circulated shortly to the Council for your comments and feedback.

If you have any questions, please contact the Secretariat by email at NationalAutismStrategySecretariax@xxx.xxx.xx. You can also call redacted: s47F - personal privacy, Director, Autism Policy on redacted: s47F - personal privacy or the assistant directors – redacted: s47F - personal privacy, redacted: s47F - personal privacy, redacted: s47F - personal privacy on redacted: s47F - personal privacy or redacted: s47F - personal privacy on redacted: s47F - personal privacy.

Kind regards

redacted: s47F - personal privacy on behalf of the National Autism Strategy Secretariat

redacted: s47F - personal privacy (she/her) Assistant Director Autism Policy/National Autism Strategy Secretariat Disability Support Branch, Disability Strategy Group Department of Social Services redacted: s47F - personal privacy 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.

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DOCUMENT 1.2.1

AutismCRC

Community insights and unheard perspectives:

Recommendations for inclusive community engagement in the National Autism Strategy

Cheryl Mangan, Hayley Clapham, Brendan James, Olivia Gatfield, Stephanie Malone

June 2023

autismcrc.com.au

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Community insights and unheard perspectives:

Recommendations for inclusive community engagement in the National Autism Strategy

Cheryl Mangan Autism CRC

Hayley Clapham Autism CRC

Brendan James Autism CRC

Olivia Gatfield Autism CRC

Stephanie Malone Griffith University

ISBN: 978-1-922365-54-5

Citation: Mangan, C., Clapham, H., James, B., Gatfield, O. & Malone, S. (2023). Community insights and unheard perspectives: Recommendations for inclusive community engagement in the National Autism Strategy. Brisbane: Autism CRC.

Cover artwork: LeeAnn Koesters, Layers of Community, 2016 Autism CRC Art Celebration entry.

“Our autistic community is our strength through the layers of support that we share in our peers, families and professionals. No two autistic people are the same shape or colour but with the right layers of support we celebrate neurodiversity.”

Copyright and disclaimer

The information contained in this report has been drafted by Autism CRC to assist knowledge and discussion to support the development of the National Autism Strategy. Copyright in this report and all the information it contains vests in Autism CRC.

You should seek independent professional, technical, or legal (as required) advice before acting on any opinion, advice, or information contained in this report. Autism CRC makes no warranties or assurances with respect to this report. Autism CRC and all persons associated with it exclude all liability (including liability for negligence) in relation to any opinion, advice, or information contained in this report or for any consequences arising from the use of such opinion, advice, or information.

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Acknowledgements

The authors acknowledge the financial support of the Australian Government Department of Social Services.

This work would not have been possible without the significant contributions of the autistic and autism community members who generously shared their experiences, ideas and perspectives through the Community views survey and the co-design workshops and interviews.

The authors would also like to thank Professor Dawn Adams from Griffith University, for their contribution to this work with the Community views survey undertaken as part of the Landscape Mapping of the National Autism Strategy Domains.

Autism CRC

Autism CRC is the independent national source of evidence for best practice in relation to autism across the lifespan and the spectrum.

We provide the national capacity to develop and deliver evidence-based outcomes through our unique collaboration with autistic people, families, professionals, services providers, researchers, and government. Together, we are addressing agreed needs and co-producing outputs with these stakeholders for the benefit of the community.

Autism CRC was established in 2013 as the world’s first national, cooperative research effort focused on autism under the Australian Government’s Cooperative Research Centres (CRC) Program. We receive funding from a number of sources, including the Australian Government.

Autism CRC is no longer part of, or associated with, the CRC Program.

autismcrc.com.au

A note on terminology

We recognise that when referring to individuals on the autism spectrum, there is no one term that suits all people. In our published material and other work, we use the terms ‘autistic person’, ‘person on the autism spectrum’ or ‘person on the spectrum’. The term ‘autistic person’ uses identity first language, which reflects the belief that being autistic is a core part of a person’s identity. Autism Spectrum Disorder (ASD) is diagnostic terminology used by the healthcare sector and is used in the context of a person being ‘diagnosed with Autism Spectrum Disorder’.

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Table of contents

Executive Summary ………………………………………………………………………………………………….. 5

1. Introduction ………………………………………………………………………………………………………. 7
2. Methods: Co-production and co-design ……………………………………………………………… 8

2.1 The co-design process ……………………………………………………………………………………………… 9

2.1.1 Research: Literature and environmental scan ................................................ 11
2.1.2 Problem definition and solution ideation: Community views survey ........ 11
2.1.3 Problem definition and solution ideation: Workshops and interviews .... 12
2.1.4 Idea validation and testing: Summary insights ideation .............................. 13
2.1.5 Delivery: Developing the recommendations for the Community engagement plan ................................................................................................... 14

3. Findings from the research phase: Literature and environmental scan ……………… 15

3.1 Diversity of autism …………………………………………………………………………………………………… 15 3.2 Intersectionality ……………………………………………………………………………………………………….. 15 3.3 Co-occurring conditions and disabilities ……………………………………………………….. 16 3.4 Target groups ………………………………………………………………………………………………….. 16 3.5 Limitations of national data ……………………………………………………………………………………. 25 3.6 Community engagement with target groups ……………………………………………………….. 25 3.7 Moving into the problem definition phase ……………………………………………………….. 26

4. Insights from the problem definition phase ………………………………………………………. 27

4.1 Community views survey participants ……………………………………………………….. 27 4.2 Workshop and interview participants ……………………………………………………………………. 29 4.3 Insights from participants: barriers and challenges to reaching and engaging autistic people in public consultation ……………………………………………………………………. 30

4.3.1 Community views survey results: barriers to autistic people having their say ................................................................................................................... 30
4.3.2 Workshop and interview insights: barriers to reaching and engaging all people to have their say ..................................................................................... 34

5. Insights from the solution ideation phase ………………………………………………………… 45

5.1 Participants ……………………………………………………………………………………………………………… 45 5.2 Community views survey results: potential solutions ………………………………….. 45 5.3 Workshops and interview insights: potential solutions ……………………………………….. 50 5.4 Community views survey: preferred participation methods …………………………… 59

5.4.1 Idea validation and testing: Summary insights ideation .................            60

6. Recommendations for inclusive community engagement …………………………………. 61

Recommendation 1 ……………………………………………………………………………………………….. 61 Recommendation 2 ………………………………………………………………………………………………. 61 Recommendation 3 ………………………………………………………………………………………………. 61

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Recommendation 4 ………………………………………………………………………………………………. 61 Recommendation 5 ………………………………………………………………………………………………. 61 Recommendation 6 ………………………………………………………………………………………………. 61 Recommendation 7 ………………………………………………………………………………………………. 61 Recommendation 8 ……………………………………………………………………………………………… 62 Recommendation 9 ……………………………………………………………………………………………… 62 Recommendation 10 ……………………………………………………………………………………………. 62

6.1 Understanding who is, and is not in the conversation ………………………………………… 63

Recommendation 1 ............................................................................................................. 63

6.2 Making information easy to understand for everyone ………………………………………… 64

Recommendation 2 .................................................................................................           64

6.3 Addressing barriers to accessing information ……………………………………………………… 65

Recommendation 3 .................................................................................................           65

6.4 Partnerships to address cultural barriers and sensitivities …………………………… 66

Recommendation 4 .................................................................................................           66

6.5 Allowing time for meaningful engagement ……………………………………………………….. 67

Recommendation 5 .................................................................................................           67

6.6 Addressing consultation fatigue ……………………………………………………………………… 69

Recommendation 6 .................................................................................................           69

6.7 Navigating discrimination and trauma and acknowledging past experiences ….. 70

Recommendation 7 .................................................................................................           70

6.8 Co-production and co-facilitation with autistic people from diverse backgrounds and life experiences ……………………………………………………………………………………………….. 72

Recommendation 8 .................................................................................................           72

6.9 Tokenism, power dynamics and valuing contributions ………………………………………… 73

Recommendation 9 .................................................................................................            73

6.10 Diverse participation methods ……………………………………………………………………………….. 74

Recommendation 10 .................................................................................................          74

7. Next steps ………………………………………………………………………………………………….. 76

Appendix A: Inclusive & accessible meeting strategies …………………………………………. 77 References ………………………………………………………………………………………………….. 80

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Executive Summary

Why we did this work

The Australian Government aims to develop a National Autism Strategy that meets the needs of all autistic people. The development of the National Autism Strategy must involve a wide range of stakeholders from diverse backgrounds including the groups whose voices and perspectives often remain unheard. This work aimed to identify these groups and determine appropriate methods for engagement in the Strategy consultation.

What we did

A co-design process was implemented through five phases: Research, Problem definition, Solution ideation, Idea validation and testing, and Delivery. The phases of the co-design process, and methods employed, were:

• established an autistic advisory group and defined target groups (n=5) – research phase
• autistic-led literature and environmental scan on best practice community engagement and target group definitions and key considerations - research phase
• co-produced Community views national survey (n=645) - problem definition and solution ideation phases
• co-delivered workshops and interviews (n=42) with autistic individuals (n=30) who identified as part of the target groups, and representatives from peak bodies, autism and/or disability organisations with (n=14) significant expertise and firsthand experience in engaging with the target groups - problem definition, solution ideation and, idea validation and testing phases
• co-produced Community engagement plan – delivery phase.

What we found

Explored through the co-design process, the data showed significant overlap between the various methods employed to define and understand the groups that require a tailored or adapted approach to actively participate in the development of the National Autism Strategy.

These groups were determined as autistic people who are also: First Nations; from culturally and linguistically diverse backgrounds including migrants and refugees; LGBTIQA+; have an intellectual disability; lived in cared or supported accommodation; lived in rural and remote communities; experienced incarceration; experienced homeless; people whose primary method of communication is not spoken language; ageing autistic people and ageing carers of autistic people and; children and young people.

The literature, problem definition, solution ideation, idea validation and testing phases of the co-design process garnered clear recommendations for inclusive community engagement. These are:

• written information should be readily accessible and conveyed in easy-to-understand language, such as easy-read or plain English, accompanied by visual aids
• ensure communications about the National Autism Strategy and opportunities for engagement are not wholly reliant on access to technology
• work through and with organisations that have longstanding and trusted relationships with various community groups

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• allow adequate time for people to prepare, process information and respond meaningfully
• consider the information and stories that have already been shared during other government consultations
• facilitate individuals’ understanding of the direct impact of their contributions or how their input can lead to positive change
• ensure topics of distress and trauma are treated with the highest level of sensitivity and compassion, with options for follow-up support
• ensure meaningful involvement of autistic people with diverse cultural backgrounds and life experiences in decision-making processes, consultations and activities
• foster a culture of equity and transparency, recognising and valuing all contributions, and ensuring confidentiality is maintained
• facilitate engagement through diverse methods and platforms, allowing individuals to select an approach that aligns with their needs and preferences
• ensure that community engagement processes consider culturally appropriate questions about the intersectionality and attributes of various stakeholders
• ensure that community engagement processes consider the importance of capturing the diverse backgrounds and experiences of the autistic community.

Next steps

The community insights and recommendations established through this body of work have informed the development of a Community engagement plan which outlines the process for involving all stakeholders in the development of the National Autism Strategy. These findings highlight that there is no ‘one-size fits all’ approach to the promotion of, and engagement in, co-design and consultation. Further, they emphasise the importance of an inclusive approach, enabling people to engage in ways that suit their individual needs and preferences – to ensure all voices and perspectives have equitable opportunity to be heard.

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1. Introduction

The Australian Government aims to develop a National Autism Strategy that meets the needs of all autistic people. A comprehensive National Autism Strategy development must incorporate the perspectives and ideas of a wide range of stakeholders from diverse backgrounds, and professional and life experiences. This inclusive approach encompasses autistic people, their families and carers, and those who work to support them.

However, there are several groups, some of which are identified in the Australian Government response to the Select Committee on Autism inquiry report: Services, support and life outcomes for autistic Australians, that may require a targeted focus. These include autistic people who are also: First Nations, from culturally and linguistically diverse backgrounds, LGBTIQA+, have complex needs, are women or girls, living in regional and remote locations as well as disadvantaged and vulnerable cohorts of the community1. For these groups, an adapted or more tailored approach will be necessary to enable engagement in the development of the National Autism Strategy.

Every autistic person is unique, each having different backgrounds, identities and often other disabilities and co-occurring conditions. These different aspects of a person’s identity are influenced by biological, social, or cultural factors that can have a significant impact on the way people experience the world. These aspects may include gender, sexuality, sex, race, ethnicity, disability, and age, as well as other characteristics such as socio-economic status and education.

‘Intersectionality’ refers to the ways in which aspects of a person’s identity can overlap to create unique experiences of discrimination, disadvantage, and inequality. These experiences of intersectionality can significantly influence an individual’s health and well-being, and access to and use of services, support systems and opportunities. Recognising the diversity of the autistic community means acknowledging the important role of intersectionality in understanding and responding to the needs of all autistic people.

Within the context of a national strategy, these factors can significantly impact a individuals’ willingness and capacity to actively participate in public consultation processes. Without effectively reaching and engaging these groups, many of which face multiple challenges and disadvantage, their voices and important perspectives may remain unheard.

To gain a deeper understanding of intersectionality and its impact on community engagement, Autism CRC undertook a co-design process. This included a literature and environmental scan on best practice community engagement for the target groups listed above, a series of workshops and interviews and input from the Community views national survey. This process took place from January 2023 to June 2023. A detailed breakdown of activities is described in section 2 of this report.

This report provides an overview of the significant considerations for the target population groups that may require a tailored or adapted approach to actively participate in the development of the National Autism Strategy. It highlights insights derived from the co-design process, incorporating direct quotes and recommendations from participants involved. The report concludes with a series of recommendations.

These recommendations have informed the development of a Community engagement plan, which outlines the process for involving all stakeholders in the development of the National Autism Strategy. This plan is a separate document accompanying this report.

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2. Methods: Co-production and co-design

Co-production involves the inclusion of autistic individuals as equal partners, alongside families, carers and those who work to support them, throughout the entire project. In the context of co-design, this means that the team (which includes autistic people) collaboratively define the approach, identify relevant questions, and jointly design and facilitate engagement activities.

Co-production provided the framework for this body of work. Autistic collaborators and team members played instrumental roles in shaping the initial approach, co-developing survey questions, co-facilitating workshops and interviews, conducting analyses, and contributing to the development of this report. In addition, an autistic advisory group (n=5) was formed to identify those groups within the community that may require a more targeted or adapted approach to enable engagement in the development of the National Autism Strategy.

The autistic advisory group identified the following groups, including those already identified by the Australian Government, as those that may require a targeted or adapted approach. Throughout this report, they will be referred to as “target groups.”

The target groups were:

• First Nations people
• people from culturally and linguistically diverse backgrounds including migrants and refugees
• people with an intellectual disability
• people whose primary method of communication is not spoken language
• people living in cared or supported accommodation
• ageing autistic people and ageing carers of autistic people
• children and young people
• people who identify as LGBTIQA+
• people living in rural and remote communities
• homeless people and
• people who are incarcerated.

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2.1 The co-design process

“It felt like a safe place to contribute to the discussion and [was] respectful of all viewpoints.” Autism CRC Co-design workshop participant (2022)

At its core, co-design is a collaborative problem-solving process. It is an investigative and creative process that brings together people impacted by a challenge or need and those with the knowledge and technical skills, to jointly create solutions. It aims to empower and put people with lived experience at the center, sharing the decision-making power to identify and understand existing needs, research and practice, and ideate and design possible solutions that address real-life challenges.

Co-design is an effective approach for exploring problems, uncovering unknown contexts, addressing unanswered questions, and ensuring that diverse opinions and experiences are heard. It serves as a powerful process to bring together stakeholders with varied skills, perspectives, and expertise, fostering collaboration to explore potential solutions that are valuable to all stakeholders.

In this project, the goal was to co-design a set of recommendations for inclusive community engagement – to inform the development of a Community engagement plan for the National Autism Strategy.

As shown in Figure 1, the co-design process encompassed five phases, each building on the previous phase: research, problem definition, solution ideation, validation and testing, and the delivery of a Community engagement plan. In this report, we will refer to this approach as ‘co-design’.

Figure 1: Co-design process overview

The co-design process encompassed five phases, each building on the previous phase: research, problem definition, solution ideation, validation and testing, and the delivery of a Community engagement plan. In this report, we will refer to this approach as ‘co-design’.

Figure 1: Co-design process overview

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The specific activities undertaken within each of these stages are detailed in the table below.

Table 1: Co-design activities

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2.1.1 Research: Literature and environmental scan

The literature and environmental scan primarily focused on essential definitions related to the target groups, estimating the prevalence within the autistic population, and identifying significant factors concerning communication and engagement requirements. In the environmental scan, the emphasis was on uncovering instances of best practice in working with the identified target groups.

The literature and environmental scan was conducted from February 2023 to March 2023, using Google Scholar, Google, Australian government agency websites and journal articles. Keywords and key search terms relevant to the scope and focus of the literature scan were identified. These encompassed terms associated with autism and disability, such as autism, ASD, autistic, disability, disabled. Additionally, terms searched specifically included prevalence, definition, representative organisations, and engagement methods for working with autistic people, intersectional and targeted community groups.

2.1.2 Problem definition and solution ideation: Community views survey

An online Community views national survey was used to capture the thoughts and perspectives of the autistic community and other relevant stakeholders (e.g., families/carers, teachers, health professionals) in relation to the National Autism Strategy. The survey included co-produced questions, developed with autistic team members and members of the advisory group, to garner insight into the main issues that may make it challenging for autistic people to have their say, and the preferred methods for providing input and feedback in the development of the National Autism Strategy. In the survey, three questions were asked:

• How would you like to have your say?
• What do you think are the main issues that make it hard for autistic people to have their say?
• Is there anything else you would like us to know about how to give autistic people the opportunity to have their say?

For the first question, participants responded by indicating their support/preference for six pre-determined methods (e.g., online/paper based, interview). For the remaining questions, participants provided written responses indicating their thoughts. These three questions were added as the final section of a larger Community views survey informing the National Autism Strategy (Landscape Mapping of the National Autism Strategy domains) conducted by Griffith University and Curtin

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University, commissioned by Autism CRC. The Community views survey received full ethical approval from Griffith University and was live from 13 March 2023 until 5 May 2023.

In total, 1,562 people clicked through to the larger Community views survey, with 645 people choosing to answer the questions relating to methods to support autistic people having their say in the development of the National Autism Strategy.

Data analysis and synthesis

Two methods were used to analyse the data. For the first question (“how would you like to have your say?”), the percentage of participants selecting each option was calculated. For the two open-ended questions, inductive content analysis was used. This technique means that categories and codes were developed from the responses provided by the respondents, thus ensuring that their specific ideas and perspectives were reflected. As such, each response provided by the respondents was read and coded, with similar responses grouped together into codes. Given the number of respondents, initially many codes were developed. Similar codes were then combined into categories.

The number of respondents who provided a response that reflected a category was then calculated. This provided an indication of how many people considered this category to be important to consider when asking the autistic community for input into the National Autism Strategy.

To ensure that the categories discussed in this report represent the perspectives of the community rather than an individual, only those categories mentioned by 5% or more of respondents were included.

2.1.3 Problem definition and solution ideation: Workshops and interviews

Workshops and interviews provided a forum to delve into the factors that may hinder autistic people from having a say when participating in public consultation. Workshop and interview participants were encouraged to reflect upon these barriers, either focusing on a specific target group or more broadly. After discussing challenges, participants were prompted with questions to stimulate discussion of potential solutions. Here the participants explored inclusive methods and processes to enable all autistic people to participate in public consultation related to the National Autism Strategy.

The workshops were 2 hours in duration, and interviews were up to 1.5 hours. All interviews and workshops were co-facilitated by an autistic collaborator/team member. Workshops and interviews were video recorded, with the consent of participants, and transcribed for ease of data analysis.

Autism CRC’s inclusive meeting protocol was used to promote a safe and accessible workshop environment. This included inviting people to participate in a way they felt comfortable, with the camera on or off, using the chat function instead of speaking, and enabling follow-up input from all participants. Autism CRC’s inclusive and accessible meeting strategies protocol is provided in Appendix A.

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These practices also supported a trauma-informed approach which was underpinned by the following principles of safety, trust, choice, collaboration, empowerment, and respect for diversity. These principles, which align with Blue Knot’s (2023) foundational elements of a trauma informed service, are described in more detail in section 3 of this report.

To cater to the diverse needs and preferences of the participants, autistic participants were given the option to engage in ‘autistic people only’ workshops or contribute their insights through interviews. This ensured that they had opportunities to engage in a manner that best suited their needs and preferences.

Seven workshops and eight interviews were held between March 2023 and June 2023, engaging 42 stakeholders including autistic people (71%), families/carers of autistic people (45%), representatives from organisations that work with autistic individuals (47%) and representatives from autistic led organisations (11%).

Note: The total percentages add to greater than 100% as some respondents identified as being in multiple groups (e.g., autistic and/or organisation representative and family member).

Data analysis and synthesis

Data were analysed through thematic analysis to inform recommendations for inclusive community engagement in public consultations. Data was first organised by target group (First Nations, culturally and linguistically diverse, LGBTIQA+ etc) and then classified into barriers or solutions. From there, thematic analysis was conducted to identify common themes for each target group. These target group-specific themes were then consolidated to create overarching themes. Acknowledging that many in the autistic community, identify with multiple groups and belong to multiple communities, this approach ensured the recommendations were inclusive of all target groups, and all other stakeholders.

2.1.4 Idea validation and testing: Summary insights ideation

A summary of the information and ideas shared in the workshops and interviews was provided to the participants for validation and further input. Participants were also invited to comment on the ideas and provide examples of how this might work in practice.

Providing additional feedback on the workshop summary was optional. Twenty-three participants (54%) provided further input in the validation process including 18 (78%) autistic people representing themselves and 5 (21%) representatives of organisations.

This step enabled participants to offer additional ideas and insights, which were then analysed and synthesised along with the survey data and inputs from the workshops and interviews.

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2.1.5 Delivery: Developing the recommendations for the Community engagement plan

The insights from the literature and environmental scan, Community views national survey, workshops, interviews and feedback from the validation process, have been synthesised into a series of recommendations for inclusive engagement. This includes clear direction on how these recommendations might be put into action in the context of the National Autism Strategy consultation process. These recommendations have informed the development and delivery of a Community engagement plan, which is a separate document accompanying this report.

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3. Findings from the research phase: Literature and environmental scan

The literature and environmental scan was the key activity of the research phase. It sought to provide an understanding of the diversity of autism and intersectionality that can impact community engagement in national consultation processes. Further, this assisted in clarifying the problem to be investigated in greater depth through subsequent surveys, workshops, and interviews.

3.1 Diversity of autism

Every person on the autism spectrum is unique, with individual strengths, interests, and challenges. Autism is a neurodevelopmental condition characterised by differences in social interaction, communication, behaviours, and interests. The presentation and impact of autistic traits can vary widely in nature and intensity between individuals; and in the same individual over time, as can their needs and nature of engagement with service sectors.

Life outcomes for people on the autism spectrum and their families have been and continue to be far from optimal on many dimensions including school completion, education, and employment outcomes. Today, we better understand that it is often an individual’s co-occurring conditions, circumstances and non-inclusive environment that are disabling. As a result, the significant strengths and interests of autistic individuals have often not been recognised and engaged for their and the community’s benefit.

3.2 Intersectionality

Autistic people are in every community, and always have been. Autistic people are people of colour. Autistic people are immigrants. Autistic people are a part of every religion, every income level, and every age group. Autistic people are women. Autistic people are queer, and autistic people are trans[gender]. Autistic people are often many of these things at once. The communities we are a part of and the ways we are treated shape what autism is like for us.

Autistic Self Advocacy Network (2023)2

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Intersectionality is a framework for understanding how the different aspects of a person’s identity intersect to create unique experiences of discrimination, disadvantage, and inequality. This includes experiences of health, and wellbeing, and access to use of services, supports and opportunities.

Different aspects of a person’s identity are influenced by biological, social or cultural factors. This may include, but is not limited to gender, sexuality, sex, race, ethnicity, disability, and age, as well as other characteristics such as class and education. Recognising the diversity of the autistic community, means acknowledging the important role of intersectionality in understanding and responding to the needs of all autistic people.

3.3 Co-occurring conditions and disabilities

In addition to varied experiences associated with intersectionality, autistic people also experience other disabilities and/or conditions at a much higher rate than non-autistic people. Known as co-occurring conditions, these include: intellectual disability, learning disabilities, attention deficit hyperactivity disorder (ADHD), anxiety disorders, depression, sensory processing disorder, sleep disorders, epilepsy, eating disorders and obsessive-compulsive disorder.

A US study on the prevalence of co-occurring medical and behavioural conditions found that 95% of children had at least one co-occurring condition or symptom. Results suggested that co-occurring conditions are more prevalent as autistic children get older3. Further, an estimated 50%-70% of autistic people experience mental health difficulties4.

Autistic people often have co-occurring conditions and other disabilities. For people with a co-occurring health and mental health condition and/or disability, their engagement in co-design and consultation may be influenced by several factors:

• Attitudinal – Stigma, prejudice, discrimination, and stereotypes
• Environmental – venues, room layout, facilities, seating, lighting, technology
• Demographic – location and transportation
• Communication – hearing, speaking, reading, writing, and or understanding information.
• Condition or disability specific – type, nature of the condition and/or disability and impact on daily living.

3.4 Target groups

Table 2 presents a summary of each target group, including estimates of the autistic population and key considerations for fostering inclusive engagement. Through analysis of the literature, close links between barriers to service and key considerations in inclusive engagement were identified. As a result, barriers to service were noted in the findings, whenever it applied.

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Table 2: Target group definitions and estimates

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3.5 Limitations of national data During the literature scan, it became evident that there are significant limitations to the amount of available information and data on these target population groups within the autistic community in Australia. This reflects the current national data sets, which are fragmented and inconsistent, resulting in an inadequate understanding of the true representation of these target groups. Examples in the national data include: • The lack of or limited available data of different population groups • Inconsistent data collection standards • Inconsistent definitions for sampling of population groups. Examples in the literature include: • Small sample sizes for different population groups, meaning the data may not be representative of all members of the population group • Samples limited to children, therefore lacking insight from autistic adults • Reliance on inferences drawn from studies in the UK & US • Suggestions or inferences made, but no reliable primary source cited. 3.6 Community engagement with target groups The key considerations for services and community engagement with the target groups have emphasised the highly recommended approach put forth by the autistic advisory group. This approach advocates for the implementation of a trauma-informed perspective in all engagements involving autistic individuals, their families, and the professionals who support them. It is important to acknowledge and (seek to) understand the impact of trauma and negative experiences in people’s lives. This may include experiences of social exclusion and isolation, discrimination, intersectional marginalisation, and socio-economic disadvantage. The evidence affirmed that autistic people often have co-occurring mental health conditions, including post-traumatic stress disorder (PTSD) and complex PTSD. They may also experience daily stressors and demands, associated with limited or absence of support and navigating systems, and barriers to education, healthcare and disability support. For autistic people who are homeless, incarcerated or low-income, additional stressors may arise as they may struggle to meet basic needs. These experiences of trauma and adversity can lead to feelings of mistrust, vulnerability, disbelief that change will occur, and a reluctance to trust institutions (including government), or actively participate in engagement and consultation processes. Our trauma informed approach was underpinned by the following principles, aligned with Blue Knot’s (2023) foundational elements of a trauma informed service: • Safety: Promote an environment that encourages emotional as well as physical safety. The facilitators were welcoming and used strength-based language. Options were provided for contact before and after the workshops and interviews. • Trust: Honesty and transparency about purpose of engagement and how input will be used. Clear and direct communication was provided in advance of workshops and interviews with ways to opt-out or contribute anonymously.

• Choice: Clear and direct communication about what to expect prior to engagement, so people could make informed choices. Information was provided in advance of workshops and interviews, including ways to contact the organisers to ask any questions, or discuss concerns. • Collaboration: Working together to jointly solve problems. Clear communication of the values and purpose of the co-design process was made available in pre-workshop or interview preparation guide. • Empowerment: Respecting individual communication needs and preferences. People were invited to participate in a way that works for them and that they would feel most comfortable with, (e.g. using chat, turn camera on or off, moving around or stimming). • Respect for diversity: Acknowledging that people have multiple identities that influence who they are and their life experiences. Recruitment sought to engage a wide range of stakeholders including autistic people with diverse intersectional experiences37. 3.7 Moving into the problem definition phase The literature and environmental scan in the research phase provided valuable insights and understanding of the key issues facing the target groups. This provided an opportunity to garner even greater insight into the diversity of the autistic community, and key challenges to address in community engagement related to the National Autism Strategy.

4. Insights from the problem definition phase

An overview of the diversity of the autistic community, intersectionality and target groups derived from the literature and environmental scan was provided in the workshop and interview preparation guide. Additionally, a summary of these key points was presented at the outset of each workshop. This approach effectively framed the problem space, establishing a shared understanding among participants regarding the specific target groups under discussion.

Throughout the survey, workshops, and interviews, participants were prompted to consider both the challenges and potential solutions. This approach fostered ideation and exploration of inclusive methods, processes that could significantly enhance engagement in public consultation processes.

A total of 695 stakeholders across workshops (n=42), interviews (n=8) and the national Community views survey (n=645) were engaged. A breakdown of participants in each activity is detailed, followed by results for the problem definition and solution idea phases separately.

4.1 Community views survey participants

In total, 1,562 people clicked through to the larger Community views survey, with 645 people choosing to answer the questions relating to methods to support autistic people having their say in the National Autism Strategy. Some people identified as being in multiple categories (e.g., autistic person and researcher) meaning that the percentages add up to more than 100%. Nearly half (n = 282; 44%) of the respondents were autistic and 59% (n = 378) were parents, family members, or caregivers of autistic people. Respondents also identified as educational professionals (n = 151; 23%), allied health professionals (n = 110; 17%), mental health professionals (n = 69; 11%), medical professionals (n = 35; 5%) and researchers (n = 68; 11%).

Figure 2: Community views survey respondents by stakeholder group

Medical professionals _ 35 Researchers [I cs Mental health professionals [NM co Allied health professionals x 110 Education professionals x 15:

Avtistic is 2° 2

Parents, family members or caregivers —— 378 | |

Most of the respondents identified as a woman (n = 495; 77%), followed by men (n = 82; 13%) and non-binary (n = 45; 7%). Seven people identified as a different gender, while eleven preferred not to answer the question.

Figure 3: Community views survey respondents by stakeholder group

Men

Non-binary 7% Women

77% Prefer not to say

2%

Other gender 1%

The most common age range of the respondents was 50-64 years old (n = 217; 34%), with 18- to 29- year-olds (n = 54; 8%) and 65+ year olds (n = 36; 6%) being the least represented.

Over half of the respondents identified as neurodivergent (n = 339; 53%), and 17% identified as LGBTIQA+ (n = 112). When asked, 12% of respondents identified as having a physical disability (n = 80) and 2% reported having an intellectual disability (n = 15). Only 0.2% (n = 1) identified as non- speaking, with 2 respondents using AAC (Augmentative and Alternative Communication) full-time (0.3%) and 16 respondents using AAC part-time (3%). Two percent (n = 13) identified as Aboriginal and/or Torres Strait Islander, and 9% identified as being culturally and linguistically diverse (n = 55).

4.2 Workshop and interview participants

In total, 42 stakeholders were engaged- including autistic people, families/carers of autistic people and representatives from organisations that work with them.

Out of 42 participants, 30 were autistic and representing themselves (not an organisation), 5 were representatives from autistic-led organisations, all autistic themselves, and 14 were representatives from peak bodies, autism and/or disability organisations.

All participants were aged over 18, with the most common age group being 30 to 39 years.

Figure 4: Co-design participants by age representation

60 +e 18 to 24 *\ 1 6%

25 to 29 8% 50 to 59

23% ee

40 to 49 21%

30 to 39 36%

Figure 5: Co-design participant

Representatives from peak bodies and disability organsisations 31%

1

Autistic individuals Representatives representing from Autistic-led themselves organisations 60%

9%

All 30 autistic people in the workshops and interviews identified with at least one form of intersectionality, as shown in Figure 6.

Figure 6: Autistic participants and identified intersectionality

Experienced incarceration Lived in rural and remote areas Non-speaking

Lived in cared or supported accommodation

Intellectual disability

Experienced homelessness, or risk thereof Culturally and linguistically diverse Parents and carers

LGBTQIA+

Individuals with significant expertise and firsthand experience in engaging with the target groups were involved in the workshops and interviews. The greatest level of experience was focused on working with LGBTIQA+ individuals, those residing in rural and remote communities, and individuals with intellectual disabilities. Figure 7: Participants knowledge and experience with target groups

4.3 Insights from participants: barriers and challenges to reaching

  and engaging autistic people in public consultation

Well understood problems are the key to finding solutions. In the co-design process, survey, workshops and interviews were used to explore the problem space and gather ideas about potential solutions. The following section reports on the Community views survey responses, workshops and interviews.

4.3.1 Community views survey results: barriers to autistic people having their

   say

The Community views national survey data showed that approximately: • 1 in 5 respondents highlight challenges to accessibility as a barrier to autistic people having their say. • 1 in 5 respondents highlight that methods often do not take into consideration the communication differences or challenges experienced by autistic people. Ranking of issues identified by all respondents, and by respondent group is shown in Table 3.

Table 3: Fifteen most frequently identified barriers to autistic people having their say

Note: The total percentages add to greater than 100% as some respondents identified as being in multiple groups (e.g., autistic and family member).

4.3.2 Workshop and interview insights: barriers to reaching and engaging all

   people to have their say

Data gathered in response to the key barriers and challenges in reaching and engaging target groups, are presented in table 4 below. It is worth noting that these key barriers and challenges were largely consistent with those identified in the national Community views survey responses, however, the workshops and interviews provide the opportunity to develop a deeper understanding of the challenges.

Table 4: Insights from workshops and interviews: barriers and challenges to people having their say

5. Insights from the solution ideation phase

In the survey, workshops and interviews, participants were invited to consider the challenges and solutions in the same session. This allowed for ideation on inclusive methods, processes, and potential solutions that could facilitate meaningful participation.

5.1 Participants

For information regarding participants in the Community views survey, and workshop and interviews, please refer to sections 4.1 and 4.2 respectively.

5.2 Community views survey results: potential solutions

The Community views survey included an open question regarding how to give autistic people the opportunity to have their say. • Approximately 1 in 3 respondents drew attention to the importance of ensuring flexibility to support the diversity of autistic people’s communication and response preferences.

Ranking of the additional information provided, relevant to supporting autistic people to have their say, is shown in Table 5.

Table 5: Ten most frequently reported methods or considerations to support autistic people having their say

Note: The total percentages add to greater than 100% as some respondents identified as being in multiple groups (e.g., autistic and family member). The two categories ranked 4= were endorsed by the same number of respondents overall.

5.3 Workshops and interview insights: potential solutions

In the co-design workshops and interviews, participants were asked to identify potential solutions regarding reach and engagement. The solutions are mapped against key challenges and are summarised in Table 6.

Table 6: Insights from workshops and interviews: key challenges and potential solutions

5.4 Community views survey: preferred participation methods

The Community views survey asked participants to indicate which of the listed methods supported autistic people to have their say. Data analysis showed that approximately: • 4 in 5 indicated online or paper-based surveys as a way that autistic people can have their say. • 1 in 2 indicated interviews over the phone or online were an effective method for autistic people to have their say • 2 in 5 respondents indicated that group discussions (or focus groups) were an effective method for autistic people to have their say.

Table 7: Percentage of respondents who identified pre-determined methods as effective for autistic people to have their say

Note: The total percentages add to greater than 100% as some respondents identified as being in multiple groups (e.g., autistic and family member).

Respondents were also provided with the opportunity to suggest additional methods to support autistic people having their say (listed as “other” in Table 6). Additional suggestions included: • online discussion boards that are available for longer time periods to allow for processing time; • expressive art (e.g., digital, painting, drawing, music); • clinician facilitated or supported interviews. It is important to note that multiple respondents indicated autistic people should be able to contribute in any way they find possible, with numerous options offered so the autistic person can choose the method most appropriate for them.

5.4.1 Idea validation and testing: Summary insights ideation

A summary of the information and ideas shared in the workshops and interviews was provided to the participants for validation and further input. Participants were also invited to comment on the ideas and provide examples of how this might work in practice.

Participation in this was optional. 23 participants (54%) provided further input in the validation process including 18 (78%) autistic people representing themselves and 5 (21%) representatives of organisations.

This step enabled participants to offer additional ideas and insights, which were then analysed and synthesised along with the survey data and inputs from the workshops and interviews to inform the recommendations.

6. Recommendations for inclusive community

engagement

In addition to conducting a literature and environmental scan, valuable insights were derived from the Community views survey and the workshops and interviews. There was significant overlap and taken together, this information provides clear recommendations for inclusive community engagement.

Recommendation 1 Ensure that community engagement processes consider culturally appropriate questions about the intersectionality and attributes of various stakeholders.

Recommendation 2 Written information should be readily accessible and conveyed in easy-to- understand language, such as easy-read or plain English, accompanied by visual aids.

Recommendation 3 Ensure communications about the National Autism Strategy and opportunities for engagement are not wholly reliant on access to the internet or technology.

Recommendation 4 Work through and with organisations that have longstanding and trusted relationships with various community groups.

Recommendation 5 Allow adequate time for people to prepare, process information and respond meaningfully.

Recommendation 6 Consider the information and stories that have already been shared during other government consultations, and facilitate individuals understanding of the direct impact of their contributions or how their input can lead to positive change.

Recommendation 7 Ensure topics of distress and trauma are treated with the highest level of sensitivity and compassion, with options for follow-up support.

Recommendation 8 Ensure meaningful involvement of autistic people with diverse cultural backgrounds and life experiences in decision-making processes, consultations, and activities.

Recommendation 9 Foster a culture of equity and transparency, recognising and valuing all contributions, and ensuring confidentiality is maintained.

Recommendation 10 Facilitate engagement through diverse methods and platforms, allowing individuals to select the approach that aligns with their needs and preferences.

6.1 Understanding who is, and is not in the conversation

The literature and environmental scan revealed noticeable gaps in data reporting on the prevalence of autistic people and their intersectional experiences. This gap was further explored through workshops and interviews, where participants demonstrated a keen awareness of the perspectives of those who were not present in the discussions. A fundamental challenge arises when we lack awareness of the intersectionality of individuals ‘present in the room’, making it difficult to identify who might be missing.

The survey responses from the community, or lack thereof in certain groups, reinforced the limited representation of certain groups, such as First Nations people, culturally and linguistically diverse people, older adults (including aging carers of autistic people), people with co-occurring intellectual disability, homeless people, and those living in cared or supported accommodations. These groups possess valuable insights into their experiences, and it is crucial to ensure their perspectives are heard. Without addressing this underrepresentation, these groups will continue to be overlooked in policy and service provision.

During the workshops and interviews, the role of gatekeepers was highlighted. It was acknowledged that in certain situations, such as within accommodation providers, or the justice system, access to autistic people may need to be facilitated through these individuals and/or organisations.

Recommendation 1 Ensure that community engagement processes consider culturally appropriate questions about the intersectionality and attributes of various stakeholders.

How this works • Throughout the process ask, who are we hearing from and who is being excluded? • Balance the need to respect people’s privacy with the need to gain necessary information, by only asking what is necessary. • Communicate why this information is necessary to obtain. • Include the option to opt out of answering questions about personal characteristics. • Include stakeholders to identify questions and needs of the community in data collection.

6.2 Making information easy to understand for everyone

Communication plays a crucial role not only in obtaining information but also in making individuals feel included, valued, comfortable, and heard. Taking the necessary steps to ensure accessible communication enables opportunity for the community to participate fully in national consultation.

In the Community views survey, lack of consideration of accessibility was the most frequently identified barrier to autistic people having their say in a national consultation process. In the workshops and interviews, it was noted that information is not always easy to understand. One participant shared their difficulty in understanding information that did not use plain language or visual aids, stating “with the big words, I don’t really understand what they are”.

Easy Read is widely promoted as the best practice for accessible communication for individuals with an intellectual disability. This also aligns with the Migration Council Australia’s (2022) recommendation that effective communication should involve presenting information in a language that is easily understood, at an appropriate comprehension level, and from a trusted source.

Taking the time to ensure information is accessible is necessary to ensure individuals can meaningfully engage and contribute to the National Autism Strategy.

Recommendation 2 Written information should be readily accessible and conveyed in easy-to- understand language, such as easy-read or plain English, accompanied by visual aids.

How this works • Write all communications in plain language, in words everyone can understand quickly and without using jargon. • Information should be inclusive and respectful of cultural differences and include the embedded culture and representation of disability. It should cater to different age groups and be presented in multiple accessible formats such as plain English, multi-language, and Easy Read with visuals and Auslan sign language. • Ensure budget provisions for translation of written communication into Easy Read and different languages. • Information should include details about the National Autism Strategy, how to be involved, the importance of having a say, point of contact details, FAQs, and visual maps for in-person activities. • Present information in multi-media formats including social media, audio, video for easy translation, and infographic or visual format. • See the Australian Government’s Style manual for guidance on accessible writing and communications particularly for Government communications .

6.3 Addressing barriers to accessing information There are various factors that can impede people’s access to online information and their ability to provide input through online platforms. A significant portion of autistic individuals in Australia reside in remote and very remote areas, where reliable internet access may be limited. Additionally, access to technology can be significantly restricted for individuals who are homeless, incarcerated, or living in supported and cared accommodations. This limitation is often due to their reliance on others for information and technology access, or in cases where access is provided, it is subject to strict regulations.

Further, even when access is available in some form, there is an additional barrier of digital literacy or familiarity. Internet-based channels like social media or media campaigns are less like to reach individuals facing this barrier, particularly those experiencing homelessness or living in rural and remote areas.

The limitations of internet-based communications were affirmed in the workshops and interviews, where participants suggested that many people may not be aware of the National Autism Strategy, or opportunities to become involved. This may be more significant for autistic people who are isolated, ageing autistic people and ageing carers of autistic people who are often left out of the loop, as well as children and young people.

A consistent message conveyed throughout the co-design process emphasised that access to technology and digital literacy should not serve as barriers to raising awareness about the National Autism Strategy or engaging in its development.

Recommendation 3

Ensure communications about the National Autism Strategy and opportunities for engagement are not wholly reliant on access to the internet or technology.

How this works

• Ensure an offline, paper-based version of all communications are available.
• Encourage active participation through traditional media and communication channels, such as newspapers, television, local councils, and community groups, whenever there are opportunities for involvement.
• Targeted recruitment and communication, through trusted organisations and community groups for people from different cultural backgrounds.
• Information and public awareness campaigns should be promoted through the following channels: – local community groups, leaders and service providers – local councils – community settings – government services – healthcare settings – educational institutions – advocacy and peak body organisations – disability, justice, health and aged care services.

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6.4 Partnerships to address cultural barriers and sensitivities The National Autism Strategy will be strengthened by input from a wide range of stakeholders including autistic people with a range of cultural backgrounds and life experiences. A key recommendation throughout all co-design engagements was the importance of adopting a partnership approach and collaborating with trusted organisations who are deeply rooted within communities.

These organisations can support engagement in the National Autism Strategy in several ways. They can leverage their networks and audiences to foster broader awareness of the National Autism Strategy and encourage active engagement. Additionally, organisations can offer specific guidance on cultural appropriateness, effective engagement methods, and appropriate language use. Because of their existing relationships, they can also provide culturally sensitive support to individuals before, during, and after engagement events and activities.

The literature affirms the value of this approach, emphasising that cultural appropriateness encompasses more than just language translation and behavioural considerations. It extends to respecting cultural sensitivities and addressing topics that may be ‘triggering’ or distressing to certain groups.

It is important that individuals can input into the National Autism Strategy in a culturally sensitive and safe manner. This is especially important for First Nations people and culturally and linguistically diverse communities, including refugee groups. Throughout the co-design phases, the value of co- leadership and co-production, particularly with autistic people of similar cultural backgrounds and life experiences, was emphasised. This approach ensures cultural relevance and promotes psychological safety in any engagement.

Recommendation 4

Work through and with organisations that have longstanding and trusted relationships with various community groups.

How this works

• Engage a mix of peak bodies and “grassroots” community organisations, nominated by autistic people.
• Develop key messages and base communications that can be tailored by organisations to suit the needs of their specific population group.
• Partner with organisations that have the capacity for and commitment to co-leadership and co-production with autistic people who identify with specific intersectionalities.

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6.5 Allowing time for meaningful engagement During the workshops and interviews, participants shared their experiences of not being given adequate time to process information, prepare their responses, or contribute after consultation activities. Individuals with intellectual disabilities expressed that insufficient time for processing hindered their ability to express their ideas effectively. Similarly, insufficient time also posed a significant barrier for non-speaking autistic individuals who described the communication process through various methods as exhausting and time-consuming. They emphasised the need for substantial preparation, as exemplified by one participant who was non-speaking stating, “just to put this into context, it took me approximately 8-10 hours to type and produce these answers (for the one-hour co-design interview), over the period of 2-3 weeks.”

This was consistent with the Community views survey findings which indicated sufficient time should be provided to support the processing of the questions and the construction and delivery of responses (whether written or verbal). This may be, for example, through providing a long lead-time for the submission of a survey or providing interview questions prior to the interview.

Furthermore, it was noted that families and carers, who are often responsible for day-to-day support, may have limited time available and may prioritise immediate needs over policy-related matters. Contributing to initiatives like the National Autism Strategy can create additional pressure for them. Given these considerations, it is crucial to provide individuals with adequate time to prepare, process information, and respond.

Recognising the role of preparation in alleviating anxiety, it is necessary to provide adequate information in advance. For workshops, interviews, meetings, and events this encompasses agendas and schedules as well as event and venue guides. By providing these resources ahead of time, individuals will have an enhanced opportunity to prepare themselves, enabling greater capacity for contribution and an increase in meaningful and productive engagement.

Recommendation 5

Allow adequate time for people to prepare, process information and respond meaningfully.

How this works

• Ensure an early communication plan that includes information about objectives, processes and a calendar of events that will allow people to plan ahead.
• Ensure sufficient time for preparation by sending event guides, meeting agendas and questions at least one week in advance. These guides should encompass the following components: – Detailed agenda including a comprehensive schedule with time stamps, clearly indicating when participants will have the opportunity to contribute. This helps individuals plan and allocate their time effectively. – Instructions for accessing or attending the meeting: Provide clear instructions on how to access the meeting, whether it is in person or virtual. Include any necessary login details, links, or visual directions to the physical location or venue layout. – Specify who will be attending the meeting. This information allows participants to familiarise themselves with the individuals they will be interacting with, promoting a sense of inclusion and preparedness.

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• Provide opportunities for families and carers to access (free) respite or support to attend meetings and consultation events.
• Allocate sufficient time for consultations, ensuring a structured approach that allows for preparation, response preparation (especially for non-speaking autistic individuals), processing, decompression, and post-consultation feedback opportunities.
• Throughout the process, provide reminders or check ins with people to see if they would like to contribute or if they have anything further to add.

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6.6 Addressing consultation fatigue While not explicitly highlighted in the literature and environmental scan, or the Community views survey, a common sentiment of consultation fatigue experienced by the autistic community was indicated in the workshops and interviews. Many individuals expressed a sense of exhaustion from repeatedly recounting their personal experiences to the government and various other organisations. This included recent reviews and initiatives like the Senate Select Committee on Autism inquiry, National Disability Insurance Scheme review, Australia’s Disability Strategy, Early Years Strategy, Senate Select Committee Inquiry into School Refusal, Senate Select Committee Inquiry into disruption in Australian classrooms, and state-based initiatives such as the development of South Australia’s Autism Strategy.

In the workshops and interviews, it was expressed that families, especially those with young children on the autism spectrum, may experience a sense of being overwhelmed by the substantial amount of research and the numerous requests for engagement and consultation. Another significant challenge identified was the difficulty of engaging individuals when they are unable to see the direct impact of their contributions or how their input can lead to positive change. Participants emphasised the challenge of prioritising consultations amidst the immediate needs that require their attention.

One important suggestion was for the National Autism Strategy to consider the insights shared in previous government consultations. Additionally, emphasising that maintaining ongoing communication and providing follow-up on the utilisation of input are foundational to developing trust and providing transparency. This continuance of communication is a key element in conveying what actions will be taken based on the contributions. Thus, ensuring stakeholders are informed about the tangible outcomes resulting from their participation.

Recommendation 6

Consider the information and stories that have already been shared during other government consultations and facilitate individuals understanding of the direct impact of their contributions or how their input can lead to positive change.

How this works

• Consider the information (and data) that people have already shared in other government consultations, inquiries, and research activities.
• Provide clear communication up front about community engagement and consultation activities, what will be asked of them as well as information about how their input will be used in the development of the National Autism Strategy.
• Provide a consistent point of contact for questions, contactable via accessible multi-methods (webform, email, post, phone etc).
• Create a visual representation, such as an infographic or timeline, that illustrates the relationship between the National Autism Strategy, previous consultations/inquiries, and potential future developments. This visual aid can enhance comprehension and provide a clear overview of the policy landscape.

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6.7 Navigating discrimination and trauma and acknowledging past experiences During workshops and interviews, many participants spoke about instances of discrimination, mistreatment, and trauma faced by autistic individuals. Participants also expressed feeling disregarded, not being given due attention, or being misunderstood - resulting in diminished confidence and self-doubt when sharing their viewpoints. One participant stated, “It can be challenging to believe that your voice deserves to be heard…”. Non-speaking autistic individuals conveyed similar sentiments, frequently unsure if their thoughts and intellect were genuinely recognised by others.

The literature and environmental scan highlighted the occurrence of institutional trauma, particularly among individuals who have experienced homelessness, First Nations communities, culturally and linguistically diverse (CALD) groups, and individuals who have had experiences involving the criminal justice system. Also, the increased occurrence of psychological distress and suicide rates within the LGBTIQA+ community emphasises the importance of conducting all engagement and consultation activities with sensitivity and compassion. This extends to all target groups, community engagement and consultation will be best facilitated by trusted organisations that understand the unique intersections of each target group and can support people before, during and after the engagement.

Facilitating a tolerant, sensitive, and secure environment for individuals to comfortably share their experiences and concerns is paramount to engagement with the National Autism Strategy. The government bears the responsibility to guarantee the safety and confidentiality of this environment, by the provision of suitable support before, during, and after these engagements.

Recommendation 7

Ensure topics of distress and trauma are treated with the highest level of sensitivity and compassion, with options for follow-up support.

How this works

• Embed a trauma-informed approach throughout the entire process, encompassing safety, trustworthiness, choice, collaboration, empowerment, and respect for diversity. This approach should be evident in all aspects, including the provision of information and conduct of consultations.
• Training should be extended to all individuals engaged in facilitating co-design and consultation activities for the National Autism Strategy, as well as those involved in developing communications. The training should cover the following areas: – Mental health first aid – Neurodiversity-affirming practice – Trauma-informed practice.
• Encourage people to engage with their personal and professional support networks. Provisions should be made for the inclusion of support people in co-design or consultation events and meetings, as required.

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• Offer comprehensive guidance on self-support before, during, and after participation.
• Include trigger warnings for content that some people may find distressing.
• Provide information on necessary accommodations or supports, the option to have a support person present, the ability to opt out of certain topics, and access to mental health professionals experienced in working with autistic people.
• Use strength-based language that promotes understanding and acceptance of autism.

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6.8 Co-production and co-facilitation with autistic people from diverse backgrounds and life experiences The concept of collaboration, including through co-production, and shared facilitation was raised consistently by all stakeholder groups in the interviews and workshops and the Community views survey. The importance of involving diverse community representatives in communication development and co-facilitation of community engagement events was also reinforced in the literature and environmental scan.

Implementing visible co-production, including co-leadership and co-facilitation in; governance, workshops, interviews, working groups, forums, and meetings promotes increased and genuine collaboration. Developing a culture of inclusive collaboration is integral to meaningful engagement with marginalised groups and those who have faced discrimination.

Recommendation 8

Ensure meaningful involvement of autistic people with diverse cultural backgrounds and life experiences in decision-making processes, consultations, and activities.

How this works

• Co-production of the design of consultation events and activities including all written communications, agendas, schedules, and questions.
• Testing ideas and draft documents with autistic people including those from culturally diverse backgrounds (e.g. First Nations, culturally and linguistically diverse) as well as people with a range of co-occurring conditions including people with an intellectual disability.
• Collaborate with autistic-led and community-specific organisations, including autistic leaders that have experience working with the target group and existing trusted relationships and connections.

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6.9 Tokenism, power dynamics and valuing contributions Power sharing and transparency is important to help people understand how their contributions are utilized and fosters meaningful engagement. The Community views survey highlighted a barrier to contributing to the National Autism Strategy feeling as though they might not be listened to, doubting the effectiveness of the process, and feeling powerless to effect change.

During the workshops and interviews, participants expressed a common concern in public processes that their contributions may be undervalued, and perceived engagement as a superficial ‘checkbox exercise’, even if that was not the intention of the organisation or people asking for input. Concern was also raised regarding certain stakeholders not being represented accurately when people speak on behalf of others. It was also reported that people with an intellectual disability, children, or others were spoken about rather than directly engaged. This barrier highlights the presence of a power imbalance, and privilege within consultations, which further contributes to the sense of powerlessness in making improvements. Further, aging autistic individuals felt overshadowed by younger voices, and aging carers were not approached for their input.

The recommendations from the literature, survey, workshops and interviews highlighted the importance of establishing trust between respondents and the individuals/organisations seeking their perspectives. A crucial aspect of building this trust is through clear communication about the process, including information on data access, data usage, and the confidentiality of responses. It is also essential to provide feedback on how the responses have contributed to shaping outcomes, including those related to the National Autism Strategy.

Recommendation 9

Foster a culture of equity and transparency, recognising and valuing all contributions, and ensuring confidentiality is maintained.

How this works

• Support and accommodations addressing communication needs and preferences.
• In all communications, highlight the practical benefits and expected outcomes of ‘having your say’.
• Provide personalised acknowledgement when contributions are received and clearly outline how people’s input and ideas will be incorporated into the development of the National Autism Strategy and follow up with actual outcomes.
• Provide reassurance and value individual contributions, recognising that individuals are giving personal information and sometimes sharing deeply traumatic experiences that may leave them feeling vulnerable.
• Acknowledge that some people may not identify or be connected to any community group.
• Be aware that it may be unsafe for some people to disclose aspects of their intersectionality or that some may be uncomfortable with sharing certain aspects.
• Seek consent and explicitly inform people about the levels of privacy maintained.
• Provide people with appropriate payment for their time and contributions.
• Provide clear information about the scope, goals, and parameters of the consultation.
• Take a personal approach – introduce the National Autism Strategy and the people working on it, including government representatives. Provide relevant information for example their motivations for being involved, their personal goals or the outcomes they expect to achieve.

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6.10 Diverse participation methods The National Autism Strategy consultation should include perspectives from the multiple cohorts that it will impact- autistic people, their families and carers, and those who work with them. This will require a range of consultation methods that enable community engagement, in ways that suit individual needs and preferences, to facilitate an inclusive and comprehensive co-design and consultation process.

The autistic community is diverse. Embracing a human rights approach, everyone should have the opportunity to contribute to the development of the National Autism Strategy. Ensuring that individuals can contribute in a manner that suits their needs and preferences is essential to reaching and including a wide range of perspectives.

The Community views survey responses emphasised the importance of providing diverse engagement methods and formats to accommodate individual needs and preferences. A preference for online and paper-based surveys was expressed by different stakeholders, including autistic individuals, families, and professionals. However, it is important to acknowledge that this preference was indicated through an online survey, suggesting that people were already inclined and able to engage with a survey format. Phone or in-person interviews and focus group discussions were also indicated as preferred options. Additionally, an ideas wall, an online platform for sharing and voting on ideas, garnered positive feedback.

The importance of involving families and professionals working with autistic individuals was identified during the workshops and interviews, alongside the provision of direct avenues for autistic people to share their input. This includes the consideration of groups such as children and young people as well as individuals living in supported accommodations, those who require support or translation services for access or have gatekeepers to their access.

A key recommendation, therefore, is that a range of accessible methods should be used to support the diverse communication skills and preferences of the autistic community. While this can include online and paper-based surveys, other methods that are accessible to those with different communication skills and preferences should be available.

Recommendation 10

Facilitate engagement through diverse methods and platforms, allowing individuals to select the approach that aligns with their needs and preferences.

How this works

• Methods used to gain the perspectives of autistic people should be co-produced and/or co- designed with autistic people
• Conduct pilot-testing of participation methods, surveys, questions, and activities with several autistic people with different needs, preferences, and intersectionality
• Offer a variety of engagement and consultation options that facilitate direct involvement and active participation in all activities. These options should accommodate diverse communication methods such as: – verbal communication – choice boards

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– nonverbal cues (body language, facial expressions, eye movements) – written responses, text-based communication, – visual supports (PECS, AAC devices), and – sign language interpretation.

• Consider the involvement of translators, interpreters, communication partners, family members, support persons, and assistive technology.
• Provide multiple avenues for engagement, both online and offline, catering to individual and group preferences, age-specific considerations, cultural appropriateness, and a range of formats including surveys, forums, meetings, social events, community gatherings, and individual visits. These options should allow for flexible contributions and customisation to meet the unique needs of each person involved.

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7. Next steps

The Australian Government has made a commitment to the co-design and development of the National Autism Strategy that is firmly based on evidence and shaped by the experiences of autistic people, their families and carers and the people who work to support them. The goal of the National Autism Strategy is to establish a comprehensive approach that spans the entire lifespan. It seeks to enhance access to assessments and diagnosis, promote better integration and coordination of services, provide improved support for parents and caregivers of autistic individuals, foster social inclusion, and enhance educational, employment, and health outcomes for autistic Australians. The development of the National Autism Strategy must involve a diverse range of perspectives so it can truly meet the needs of the autistic and autism communities.

The community insights and recommendations established through this body of work have informed the development of a Community engagement plan which outlines the process for involving all stakeholders in the development of the National Autism Strategy. These findings highlight that there is no ‘one-size fits all’ approach to the promotion of, and engagement in, co-design and consultation. Further, they emphasise the importance of an inclusive approach, enabling people to engage in ways that suit their individual needs and preferences – to ensure all voices and perspectives have equitable opportunity to be heard.

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Appendix A:

 Inclusive & accessible meeting strategies

1 May 2023

Document purpose The aim of this document is to set out strategies and protocols for chairing meetings that promote equity in accessibility, engagement, and contribution.

Prior to the first meeting

• Provide information about what to expect during the meetings, including: – names and photos of members, chair and co-chairs – protocols (please see below section) – location of the meeting, if in person, directions on how to get there.
• Attendees and members surveyed about any requirements, including that of interpreters. This should reflect collaboration and power-sharing, rather than ‘offering accommodations’.
• Provide an optional session dedicated to checking technology and familiarisation with the platform. This should be scheduled at the time of day consistent with when meetings will typically be held. Alternatively, the beginning of the first meeting should allow dedicated time for technology problem-solving.

Prior to each meeting

• Send agendas and any pre-reading in advance, ideally 1-2 weeks.
• Agendas should clearly identify items for group discussion, as well as at what point motions will be voted on. The agenda should have background information to enable members to decide in advance whether they wish to contribute to the discussion and/or how they may vote on motions.

During the meeting

• Closed captions should be turned on
• Protocols (see below) to be affirmed by the Chair
• Breaks should be proportional to meeting length e.g. a 10-15 minute break every hour for meetings greater than 60 minutes.

Protocols

• Participation – members to participate in any way they feel comfortable. Specifically, have cameras off; use the chat function instead of speaking; and move around, stim and use sensory tools during the meeting.
• Accessibility – members to mute themselves when not speaking – regularly take 20-second pauses to allow people to process information – comments in the chat should be read out by the Chair or a designated person – ‘space’ to contribute may need to be created so every person may input.

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• Contributions – all members to:  respect that everyone has different experiences, perspectives, and opinions  allow everyone to talk and provide their input  avoid acronyms and jargon, and if repeatedly used, definitions to be provided in the chat  respect people’s pronouns and language preferences e.g. person on the autism spectrum, an autistic person  use strengths-based language that promotes understanding and acceptance of autism. – members afforded an opportunity to process the meeting information and contribute via email or phone within a period of time to be determined by the Chair (typically 7-days). Ideally notes from the meeting distributed immediately to facilitate this. – Chair to enable ‘space’ to allow all members to contribute. Members encouraged to use the virtual raise-hand function or raise their hand on camera to enable the Chair to create ‘space’. After ‘pauses’ (see accessibility), the Chair can invite contributions from “those who have not yet had an opportunity to contribute”. – if a member is speaking for more than 3 mins, the Chair may need to interrupt. Members should be advised at the beginning of the meeting that if they are interrupted, they can continue to type in the chat or email the additional contribution to the chair (via written, video or audio formats). These may be made available for other members, at the discretion of the Chair.

Physical environment Structuring the physical environment appropriately can make people feel comfortable and lead to increased engagement and participation. Information about the physical environment should be sent out prior to the meeting.

Consideration needs to be given to all aspects of the environment:

• Lighting – avoid bright, fluorescent, or flickering lights – use adjustable lighting, including blinds – if there is no option, let people know in advance if there is fluorescent lighting. You can suggest they might like to bring a cap, sunglasses, or tinted glasses.
• Odours – ask people to avoid wearing perfume or strongly scented deodorants – have catering away from seated/work areas – check the cleaning schedule and products to be used because the smell of cleaning products can be overwhelming.
• Décor – visual ‘clutter’ can be distracting for some people, and for others, it can lead to sensory overload. Where possible choose rooms that:  do not have brightly coloured or highly patterned: carpets; curtains/blinds; furniture; ceilings; walls; or artwork;

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– avoid using ceiling fans, if possible. These can be visually distracting as well as noisy.

• Sound – small group activities can be noisy. Break-out rooms are ideal. However, if this is not an option, ensure the groups are as far away from each other as possible. – bathroom hand dryers are very noisy, particularly in a small area. If there are hand dryers:  unplug the hand dryer or put an ‘out of order’ sign on them; and/or  provide paper towels and a waste bin.
• Temperature – individual experience of what is a comfortable temperature varies. If possible, ask participants whether they would like it cooler or warmer – room temperatures are not always adjustable, therefore, in advance of the event, encourage individuals to bring layers of clothes so they can make themselves comfortable.
• Chill out room – a quiet, low sensory space for people to use if they need a break from the environment. – ideally, a chill out room will have a variety of comfortable seating, water, low lighting, device charge points, sensory tools and instructions for use of the room displayed.

For more information, see Autism CRC Sylvia Rodger Academy Guidelines for creating inclusive environments

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28 Hill, A. O., Lyons, A., Jones, J., McGowan, I., Carman, M., Parsons, M., Power, J., & Bourne, A. (2021). Writing themselves in 4: The health and wellbeing of LGBTIQA+ young people in Australia. Melbourne: Latrobe University.

29 Australian Institute of Health and Welfare (2022). Rural and remote health. Australian Government. Canberra. https://www.aihw.gov.au/reports/rural-remote-australians/rural-and-remote-health. (accessed 19 February).

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30 National Disability Insurance Agency (2020). Participants across remoteness classifications. NDIA, Australian Government. Canberra. https://data.ndis.gov.au/media/2486/download?attachment (accessed 24 February 2023).

31 Infrastructure Australia (2019) An Assessment of Australia’s Future Infrastructure Needs. The Australian Infrastructure Audit. Australian Government. Canberra. https://www.infrastructureaustralia.gov.au/publications/australian-infrastructure-audit-2019 (accessed 20 February).

32 Australian Institute of Health and Welfare (2019). The health of Australia’s prisoners 2018. AIHW, Australian Government. Canberra.https://www.aihw.gov.au/getmedia/2e92f007-453d-48a1-9c6b-4c9531cf0371/aihw- phe-246.pdf.aspx?inline=true (accessed 10 February 2023).

33 Australians for Disability Justice (2017). The provision of services under the NDIS for people with disabilities who are in contact with the criminal justice system: Submission to the Productivity Commission. https://ddwa.org.au/wp-content/uploads/2017/12/ADJ-People-with-Disabilities-in-the-Criminal-Justice-System- for-the-Productivity-Commisison-March-2017.pdf (accessed 15 Februrary 2023).

34 Australian Institute of Health and Welfare (2021). Australia’s welfare 2021 glossary. AIHW, Australian Government. Canberra https://www.aihw.gov.au/reports-data/australias-welfare/australias-welfare- snapshots/glossary (accessed 10 February 2023).

35 Australian Institute of Health and Welfare (2022). People with disability in Australia. AIHW, Australian Government. Canberra. https://www.aihw.gov.au/reports/disability/people-with-disability-in- australia/contents/housing/homelessness-services (accessed 10 February 2023).

36 National Health Care for the Homeless Council (2014). Outreach & Enrollment Quick Guide: Promising Strategies for Engaging the Homeless Population. https://nhchc.org/wp-content/uploads/2019/08/outreach- enrollment-quick-guide.pdf (accessed 1 March 2023).

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Our values

Inclusion Valuing lived experience

Innovation Solutions for long term challenges

Evidence Truth in practice

Independence Integrity through autonomy

Cooperation Capturing opportunities together

Independent national source of evidence for best practice

autismcrc.com.au

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DOCUMENT 1.2.2

AutismCRC

Research evidence, policy and

landscape mapping to inform the National Autism Strategy

Appendices

Dawn Adams, Sonya Girdler, Stephanie Malone, Wenn Lawson, Annette Carroll, Ocean Colville, Kate Simpson, Emily D’Arcy, Emily Jackson, Lydia Timms, Valeska Berg, Patrice Whitehorne-Smith, Tanya Picen, Bahareh Afsharnejad

June 2023

autismcrc.com.au

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Research evidence, policy and landscape

mapping to inform the National Autism Strategy

Dawn Adams Griffith University

Sonya Girdler Curtin University

Stephanie Malone Griffith University

Wenn Lawson Independent Researcher

Annette Carroll Griffith University

Ocean Colville Griffith University

Kate Simpson Griffith University

Emily D’Arcy Curtin University

Emily Jackson Curtin University

Lydia Timms Curtin University

Valeska Berg Curtin University

Patrice Whitehorne-Smith Curtin University

Tanya Picen Curtin University

Bahareh Afsharnejad Curtin University

ISBN: 978-1-922365-55-2

Citation: Adams, D., Girdler, S., Malone, S., Lawson, W., Carroll, A., Colville, O., Simpson, K., D’Arcy, E., Jackson, E., Timms., L., Berg, V., Whitehorne-Smith, P, Picen, T., & Afsharnejad, B. (2023). Research evidence, policy and landscape mapping to inform the National Autism Strategy: Final report. Brisbane: Autism CRC.

Cover artwork: Jasmin Pradha, Spiral of diversity, 2018 Autism CRC Digital Art Celebration entry.

“My image is made up of words that describe diversity, what it means and how important it is. The words all make a spiral shape across the page.”

Copyright and disclaimer The information contained in this report has been drafted by Autism CRC to assist knowledge and discussion to support the development of the National Autism Strategy. Copyright in this report and all the information it contains vests in Autism CRC.

You should seek independent professional, technical, or legal (as required) advice before acting on any opinion, advice, or information contained in this report. Autism CRC makes no warranties or assurances with respect to this report. Autism CRC and all persons associated with it exclude all liability (including liability for negligence) in relation to any opinion, advice, or information contained in this report or for any consequences arising from the use of such opinion, advice, or information.

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Table of contents

Appendix A: Ethical approval for survey ……………………………………………………………………. 1

Appendix B: Survey ………………………………………………………………………………………………….. 3

Appendix C: Diagnosis …………………………………………………………………………………………… 22

Appendix D: Early intervention and support ……………………………………………………………. 37

Appendix E: Primary and secondary education ……………………………………………………….. 57

Appendix F: Postsecondary education ……………………………………………………………………. 74

Appendix G: Employment ……………………………………………………………………………………….. 79

Appendix H: Housing design …………………………………………………………………………………. 96

Appendix I: Justice ………………………………………………………………………………………………… 115

Appendix J: Mental health services ……………………………………………………………………….. 127

Appendix K: Physical health services ……………………………………………………………………… 151

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Appendix A: Ethical approval for survey

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Other project monitoring: The HREC or Ethics and Integrity Team may inquire into the conduct of any project. The Chief Investigator is responsible for the prompt provision of such information when requested.

The HREC or delegate(s) may conduct an audit of the project at any time.

Variations: Prior written approval is required from the HREC for any modification to the approved project (in accordance with Booklet 6 of the Griffith University Research Ethics Manual). Variations requests can be submitted by email to research-ethics@griffith.edu.au.

Unexpected events: If an unforeseen event occurs that may have an ethical impact upon the project, or unexpected significant risk factors emerge, immediately notify the Secretary of the HREC (ph: 373 52069 or research-ethics@griffith.edu.au).

If the continuation of a participant’s involvement in a project may be harmful, immediately withdraw the participant and advise the Secretary of the HREC (ph: 373 52069 or research- ethics@griffith.edu.au) of this action.

If the risks associated with the project are found to be disproportionate to the expected benefits suspend or modify the research project and immediately advise the Secretary of the HREC (ph: 373 52069 or research-ethics@griffith.edu.au) of this action.

Complaints or concerns about ethical conduct: Immediately notify the Secretary of the HREC (ph: 373 52069 or research-ethics@griffith.edu.au) if any complaints are made, or expressions of concern are raised in relation to the ethical conduct of the project.

Conduct project as approved: The project must be conducted according to the application approved by the HREC including continuing compliance with the conditions outlined in this letter and with the National Statement on Ethical Conduct in Human Research (2007) - Updated 2018, The Responsible Conduct of Research policy, the Australian Code for the Responsible Conduct of Research and any other relevant regulatory and legislative requirements.

The Chief Investigator has ultimate responsibility for the conduct of the project and is responsible for ensuring all others involved conduct the research in accordance with the above.

Please contact the Office for Research Ethics and Integrity team at research- ethics@griffith.edu.au should you require further information.

Yours sincerely

Professor Eleanor Milligan Chair Griffith University | Human Research Ethics Committee (EC00162)

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Appendix B: Survey

Link to copy of the survey. Note this is not the link that was provided to the participants as that survey has now ended, but it is an exact replica of what the participants saw.

https://www151.griffith.edu.au/redcap/surveys/?s=NJHJHN4HN49DMTTP

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Have your say: Informing the National Autism Strategy

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Before you begin, you can read some more information on the survey by ticking the boxes below. If you would just like to begin the survey, please scroll down to the next question.

Show me the topics that the survey covers

Show me more information on how the survey topics were selected

Show me more information on the survey format and accessibility options.

Start of survey

The questions below help us to know a little more about the people who complete our survey.

Please tick the boxes that best describe you. You can tick more than one box.

• Autistic Person
• Family/Carer of Autistic Person
• Education Professional
• Researcher
• Allied health professional
• Medical professional
• Mental health professional
• Social Worker
• Disability support worker
• Other (please describe)

What gender do you identify with?

• Man
• Woman
• Non-binary
• Prefer not to say
• Other (please describe)

What is your age?

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Do you personally identify as any of the following? (you can select multiple).

• Neurodivergent
• LGBTQIA+
• Having a physical disability
• Having an intellectual disability
• Aboriginal and/or Torres Strait Islander
• Culturally and Linguistically Diverse
• Living in out of home care or supported accommodation
• Non-speaking
• A full-time user of non-spoken communication tools (e.g. signs, Augmented or Alternative Communication; AAC)
• A part-time user of non-spoken communication tools (e.g. signs, Augmented or Alternative Communication; AAC)
• Other (please describe)

We are asking these questions to see whether people with co-occurring or intersectional identifies are represented in our sample, and whether this affects people’s experiences. By doing this, we can begin to understand more on how people with intersectional identifies can have their needs met equitably.

Press “submit” to move to the next page of the survey.

<< Previous Page Submit

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Education

Would you like to answer the questions on education?

• Yes
• No

Education includes preschool, primary school, high school and higher education - like TAFE, college or University.

Question 1. What are three problems that autistic people experience with education?

You can list up to three things or leave the box blank.

Additional information

Question 2. What do you think is causing these problems?

You can list up to three things or leave the box blank.

Additional information

Question 3. What do you think could prevent or reduce these problems?

You can list up to three things or leave the box blank.

Additional information

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Question 4. What is working well, or has worked well, for autistic people in education?

You can list up to three things or leave the box blank.

Additional information

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Have your say: Informing the National Autism Strategy

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Employment

Would you like to answer the questions on employment?

• Yes
• No

Employment includes things about preparing for work, finding, getting and keeping a job.

Question 1. What are three problems that autistic people experience with employment?

You can list up to three things or leave the box blank.

Additional information

Question 2. What do you think is causing these problems?

You can list up to three things or leave the box blank.

Additional information

Question 3. What do you think could prevent or reduce these problems?

You can list up to three things or leave the box blank.

Additional information

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Question 4. What is working well, or has worked well, for autistic people in relation to employment?

You can list up to three things or leave the box blank.

Additional information

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Have your say: Informing the National Autism Strategy

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Health care services

Would you like to answer the questions on health care services?

• Yes
• No

Health care services can include things like hospitals, or professionals such as doctors, specialists, dentists and allied health professionals (e.g. occupational therapists or physiotherapists).

Mental health care providers such as psychologists or psychiatrists are covered under the mental health services section.

Question 1. What are three problems that autistic people experience when accessing, or trying to access, physical health care services?

You can list up to three things or leave the box blank.

Additional information

Question 2. What do you think is causing these problems?

You can list up to three things or leave the box blank.

Additional information

Question 3. What do you think could prevent or reduce these problems?

You can list up to three things or leave the box blank.

Additional information

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Question 4. What is working well, or has worked well, for autistic people in relation to health care services?

You can list up to three things or leave the box blank.

Additional information

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Have your say: Informing the National Autism Strategy

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Mental health services

Would you like to answer the questions on mental health services?

• Yes
• No

Mental health services include the professionals that provide mental health care - like psychologists, psychiatrists, mental health nurses and counsellors. It also includes things like inpatient services and support lines - like Lifeline and Beyond Blue.

Question 1. What are three problems that autistic people experience when using, or trying to access, mental health services?

You can list up to three things or leave the box blank.

Additional information

Question 2. What do you think is causing these problems?

You can list up to three things or leave the box blank.

Additional information

Question 3. What do you think could prevent or reduce these problems?

You can list up to three things or leave the box blank.

Additional information

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Question 4. What is working well, or has worked well, for autistic people when using or trying to access mental health services?

You can list up to three things or leave the box blank.

Additional information

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Justice System

Would you like to answer the questions on the justice system?

• Yes
• No

The justice system includes the police, legal professionals and courts. It also includes being in custody, being detained or being in prison. It is also sometimes described as the criminal justice system.

People who interact with the justice system may be victims of a crime, people who are accused of a crime, or witnesses.

Question 1. What are three problems that autistic people experience in relation to the justice system?

You can list up to three things or leave the box blank.

Additional Information

Question 2. What do you think is causing these problems?

You can list up to three things or leave the box blank.

Additional Information

Question 3. What do you think could prevent or reduce these problems?

You can list up to three things or leave the box blank.

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Question 4. What is working well, or has worked well, for autistic people when using or trying to access the justice system?

You can list up to three things or leave the box blank.

Additional Information

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Have your say: Informing the National Autism Strategy

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Housing

Would you like to answer the questions on housing?

• Yes
• No

Housing is about where people live.

Question 1. What are three problems that autistic people experience in relation to housing?

You can list up to three things or leave the box blank.

Additional Information

Question 2. What do you think is causing these problems?

You can list up to three things or leave it blank.

Additional Information

Question 3. What do you think could prevent or reduce these problems?

You can list up to three things or leave the box blank.

Additional Information

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Question 4. What is working well, or has worked well, for autistic people in relation to housing?

You can list up to three things or leave the box blank.

Additional Information

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Autism diagnostic services

Would you like to answer the questions on autism diagnostic services?

• Yes
• No

We acknowledge that the term ‘diagnosis’ can be distressing for some autistic people. The term ‘diagnosis’ is used here it but it means the same as ‘formal identification’.

Question 1. What are three problems that autistic people, and their families/carers, experience with autism diagnostic services?

You can list up to three things or leave the box blank.

Additional Information

Question 2. What do you think is causing these problems?

You can list up to three things or leave it blank.

Additional Information

Question 3. What do you think could prevent or reduce these problems?

You can list up to three things or leave the box blank.

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Question 4. What is working well, or has worked well, for autistic people in relation to autism diagnostic services?

You can list up to three things or leave the box blank.

Expand

Additional Information

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Early Intervention and Support Services

Would you like to answer the questions on early intervention and support services?

• Yes
• No

reset

Early interventions or supports are those offered in the early years of a child’s life, generally up to 8 years old. Examples of early intervention and supports include language and behaviour skills, occupational therapists or support workers.

Question 1. What are three problems that autistic people, and their families/carers, experience when accessing, or trying to access, early intervention or support services?

You can list up to three things or leave the box blank.

Expand

Additional Information

Question 2. What do you think is causing these problems?

You can list up to three things or leave it blank.

Expand

Additional Information

Question 3. What do you think could prevent or reduce these problems?

You can list up to three things or leave the box blank.

Expand

Additional Information

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Question 4. What is working well, or has worked well, for autistic people when using or trying to access early interventions and supports?

You can list up to three things or leave the box blank.

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Appendix C: Diagnosis

Appendix C-1: Content analysis categories

Question 1: What are three problems that autistic people experience when accessing, or trying to access, diagnosis services?

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Question 2: What do you think is causing these problems and sample quote from responses?

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Question 3: What do you think could prevent or reduce these problems?

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Question 4: What is working well, or has worked well, in relation to autistic people accessing physical health services?

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Appendix C-2: Umbrella review search terms

Databases Searched

(title, abstract, and key words)

• PsychINFO
• Education Resources Information Centre (ERIC)
• Medline
• PubMed
• EMBASE
• CINAHL
• Cochrane Database of Systematic Reviews
• Scopus
• EBSCO Education Source
• Web of Science
• Epistemonikos

Search Terms

The following search terms were used to identify relevant articles

Inclusion and exclusion criteria

Systematic reviews (SRs) were included in the umbrella review if they met all the following criteria:

1. The SR was a meta-analysis or a narrative synthesis (i.e., a SR without a meta analysis). A review was considered “systematic” if it: (1) included a clear statement of the purpose of the review; (2) described the search strategy (e.g., key search terms, multiple relevant databases, specification of search limits); (3) indicated the criteria used to select studies for inclusion; (4) presented all findings relevant to the main purpose of the SR; and (5) used a method of quality appraisal for each included study.

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2. The SR reported on assessment and diagnosis for autism. SRs including diagnosis for other conditions in addition to autism could be included if results were reported separately for autistic individuals.
3. The SR focused, at least in part, on one of the following four areas: a. Recommendations to guide medical and allied health practitioners in assessing and diagnosing autism b. Clinical tools and processes that contribute to timely and accurate assessment and diagnosis for autism (e.g., consideration of diagnostic accuracy, location of assessment, single vs. multidisciplinary team, professional knowledge and experience etc.) c. Considerations regarding personal (e.g., gender, age) and environmental (e.g., residential location, financial resourcing) factors in assessment and diagnosis for autism d. The views and experiences of the autistic and autism communities regarding assessment and diagnosis for autism.
4. The results of the SR were relevant to one or more of the following questions related to guiding clinicians’ practice in assessment and diagnosis: a. What guiding principles should be followed in the assessment and diagnosis of autism? b. In making a referral, conducting a functional, medical, and/or diagnostic assessment: i. When should this be considered? ii. Who should be involved? iii. In what settings should it occur? iv. What knowledge, skills, training, and support were required? v. What information should be collected? vi. How should information be collected vii. How should decisions be made? viii. What should be the outcomes? ix. How should information be shared? c. How should the quality and safety of assessment and diagnostic services be ensured?
5. The SR was published as a thesis, conference paper, scientific report, or peer-reviewed journal article.
6. The SR had a full-text copy available in English.
7. The final literature search was conducted in the last 6 years (2017-2022). If the search end date was not stated, then the SR was published in the last 6 years. There were no restrictions placed on the design of the studies included within each SR.

SRs were excluded if they met any of the following criteria:

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1. The SR failed to meet one or more of the above inclusion criteria
2. The article was an umbrella review or “review of reviews”
3. The SR incorporated theoretical studies, text, and opinion as their primary source of evidence
4. The article was a protocol for a SR only
5. The SR focused exclusively on research related to understanding aspects of autism outside of the assessment and diagnostic process (e.g., aetiology, neuroimaging techniques, prevalence, developmental trajectories, factors impacting likelihood of autism including biomarkers, accuracy of screening tools and universal screening programs)
6. The SR had been superseded by an updated version of the same review (completed after full-text review of all SRs for all other eligibility criteria).

The SR was presented in a report, that has since been superseded by a scholarly publication (completed after full-text review of all SRs for all other eligibility criteria).

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Appendix C-3: PRISMA diagram

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Appendix C-4: References

Boshoff, K., Gibbs, D., Phillips, R. L., Louise Wiles, L., & Porter, L. (2019). A meta-synthesis of how parents of children with autism describe their experience of advocating for their children during the process of diagnosis. Health and Social Care in the Community, 27(6), e143-e157. https://doi.org/10.1111/hsc.12691

Brown, M., Marsh, L., & McCann, E. (2021). Experiences of fathers regarding the diagnosis of their child with autism spectrum disorder: A narrative review of the international research. Journal of Clinical Nursing, 30, 2758–2768. https://doi.org/10.1111/jocn.15781

Clarke, L & Fung, L. K. (2022). The impact of autism-related training programs on physician knowledge, self-efficacy, and practice behavior: A systematic review. Autism, 1-15. https://doi.org/10.1177/1362361322110201

Dorlack, T. P., Orrin B. Myers, O. B., & Piyadasa W. Kodituwakku, P. W. (2018). A Comparative Analysis of the ADOS-G and ADOS-2 Algorithms: Preliminary Findings. Journal of Autism and Developmental Disorders, 48(6), 2078–2089. https://doi.org/10.1007/s10803-018-3475-3

Ellison, K. S., Guidry, J., Picou, P., Adenuga, P., & Davis III, T. E. (2021). Telehealth and Autism Prior to and in the Age of COVID-19: A Systematic and Critical Review of the Last Decade. Clinical Child and Family Psychology Review, 24, 599–630. https://doi.org/10.1007/s10567-021-00358-0

Guan, X., Zwaigenbaum, L., & Sonnenberg, L. K. (2022). Building Capacity for Community Pediatric Autism Diagnosis: A Systemic Review of Physician Training Programs. Journal of Developmental and Behavioral Pediatrics, 43(1), 44-54. https://doi.org/10.1097/dbp.0000000000001042

Howes, A. E., Burns, M. E., & Surtees, A. D. R. (2021). Barriers, Facilitators, and Experiences of the Autism Assessment Process: A Systematic Review of Qualitative Research with Health Professionals. Professional Psychology: Research and Practice, 52(5), https://doi.org/10.1037/pro0000413

Lebersfeld, J. B., Swanson, M., Clesi, C. D., & O’Kelley, S. E. (2021). Systematic Review and Meta-Analysis of the Clinical Utility of the ADOS-2 and the ADI-R in Diagnosing Autism Spectrum Disorders in Children. Journal of Autism and Developmental Disorders, 51(11), 4101-4114. https://doi.org/10.1007/s10803-020-04839-z

Legg, H & Tickle, A. (2019). UK parents’ experiences of their child receiving a diagnosis of autism spectrum disorder A systematic review of the qualitative evidence. Autism, 23(8), 1897-1910. https://doi.org/10.1177/1362361319841488

Lockwood Estrin, G., Milner, V., Spain, D., Happé, F., & Emma Colvert, E. (2021). Barriers to Autism Spectrum Disorder Diagnosis for Young Women and Girls: a Systematic Review. Review Journal of Autism and Developmental Disorders, 8(4), 454–470. https://doi.org/10.1007/s40489-020-00225-8

Loubersac, J., Michelon, C., Ferrando, L., Picot, L. M, & Baghdadli, A. (2021). Predictors of an earlier diagnosis of autism spectrum disorder in children and adolescents: a systematic review (1987–2017). European Child & Adolescent Psychiatry. https://doi.org/10.1007/s00787-021-01792-9

Meimei, L & Zenghui, M. (2022). A systematic review of telehealth screening, assessment, and diagnosis of autism spectrum disorder. Child and Adolescent Psychiatry and Mental Health, 16(1), 1-15. https://doi.org/10.1186/s13034-022-00514-6

Rivera-Figueroa, K., Marfo, N. Y. A., & Eigsti, I. M. (2022). Parental Perceptions of Autism Spectrum Disorder in Latinx and Black Sociocultural Contexts: A Systematic Review. American Journal on

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Intellectual and Developmental Disabilities, 127(1), 42-63. https://doi.org/10.1352/1944-7558-127.1.42

Sainsbury, W. J., Carrasco, K., Whitehouse, A. J. O., McNeil, L., & Waddington, H. (2022). Age of Diagnosis for Co-occurring Autism and Attention Deficit Hyperactivity Disorder During Childhood and Adolescence: a Systematic Review. Review Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s40489-022-00309-7

Valentine, A. Z., Sophie S Hall, S. S., Emma Young, E., Brown, B. J., Groom. M. J., PhD; Chris Hollis, C., & Charlotte L Hall, C. L. (2021). Implementation of Telehealth Services to Assess, Monitor, and Treat Neurodevelopmental Disorders: Systematic Review. Journal of Medical Internet Research, 23(1), e22619. https://doi.org/10.2196/22619

van ’t Hof, M., Tisseur, C., van Berckelear-Onnes, I., van Nieuwenhuyzen, A., M., Daniels, A. M., Deen, M., Hans W Hoek, H. W., & Ester, W. A. (2021). Age at autism spectrum disorder diagnosis: A systematic review and meta-analysis from 2012 to 2019. Autism, 25(4), 862-873. https://doi.org/10.1177/1362361320971107

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Appendix D: Early intervention and support

Appendix D-1: Content analysis categories

Question 1: What are three problems that autistic people, and their families/carers, experience when accessing, or trying to access, early intervention or support services?

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Question 2: What do you think is causing these problems?

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Question 3: What do you think could prevent or reduce these problems?

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Question 4: What is working well, or has worked well, in relation to autistic people when using or trying to access early interventions?

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Appendix D-2: Umbrella review search terms

Databases Searched

(title, abstract, and key words)

• CINAHL
• Cochrane Database of Systematic Reviews
• EBSCO Education Source
• EMBASE
• Education Resources Information Centre (ERIC)
• Epistemonikos
• Medline
• PsycINFO
• PubMed
• Scopus

Grey literature search:

• Google advanced search (limited to first 100 results per search)
• PROSPERO
• Abstracts submitted to International Society for Autism Research (INSAR) conferences, and identification of corresponding full text publications.

Search Terms

The following search terms were used to identify relevant articles

Inclusion and exclusion criteria

Systematic reviews were included in the umbrella review if they met the following inclusion criteria:

1. The review was a systematic review, with or without meta-analysis. A review will be considered “systematic” if it: (1) includes a clear statement of the purpose of the review; (2) describes the search strategy (i.e., key search terms, multiple relevant databases, specification of search limits); (3) indicates the criteria used to select studies for inclusion; (4) presents all findings relevant to the main purpose of the review, including those that did not favour the intervention; and (5) uses a method of quality appraisal for each included study

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2. The systematic review reports on at least one non-pharmacological intervention that targets the acquisition of developmental or educational skills
3. The systematic review includes at least one clinical trial (RCTs), quasi-RCT, and/or controlled clinical trial. Systematic reviews that include studies with other designs will be included only if they also feature at least one randomised controlled trial (RCTs), quasi-RCT, and/or controlled clinical trial
4. The systematic review reports summarised, quantitative data on the impact of the intervention on one or more of the main outcomes of interest (described below)
5. The systematic review is published in a peer-reviewed journal or published as a publicly available scientific report
6. The systematic review has full-text copies available in the English language
7. Systematic reviews that report on interventions that were trialled in children on the autism spectrum (0-12 years of age). Systematic reviews that include children described as increased likelihood or suspected of autism will be included only if the review also included children on the autism spectrum. Systematic reviews that specify in the aims and/or search criteria that studies including children with developmental conditions other than autism (e.g., Down syndrome, global developmental delay) were specifically targeted, will only be included if outcomes were reported separately for children on the autism spectrum. Data will also be extracted from reviews which report on caregiver outcomes as described in the outcomes section
8. Priority for inclusion will be given to systematic reviews that are either limited to, or report outcomes separately for younger children (within the age range of 0-12 years). Where there are no systematic reviews identified for a specific intervention that meets this criterion, we will include systematic reviews that report outcomes for children both within and beyond the 0-12 age range.

Systematic reviews were excluded from the umbrella review if they met the following inclusion criteria:

1. Systematic reviews that do not meet the criteria to be considered “systematic”
2. Umbrella reviews, rapid reviews, or “reviews of reviews” Systematic reviews that did not include at least one RCTs, quasi-RCT, and/or controlled trial.
3. Systematic reviews that did not report on at least one non-pharmacological intervention that targets the acquisition of developmental or educational skills
4. Systematic reviews focussing solely on dietary, sleep, exercise, chiropractic, massage, acupuncture, reflexology, kinesiology, shock therapy, neurofeedback, transcranial magnetic stimulation, or hyperbaric oxygen therapy interventions. While non-pharmacological, these interventions are beyond the scope of the review

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5. Systematic reviews focusing solely on techniques (defined as one specific strategy) rather than an intervention (i.e., a collection of techniques)
6. Systematic reviews that did not report summarised outcomes of interest relevant to the current umbrella review
7. Systematic reviews that incorporate theoretical studies, text, and opinion as their primary source of evidence
8. Theses, conference papers, newsletters
9. Systematic reviews where full-texts are not available in English
10. Systematic reviews that report on interventions with children with other developmental conditions that are not autism, or where outcomes for children on the autism spectrum specifically cannot be extracted and those that only include children described as increased likelihood or suspected of autism
11. Systematic reviews that do not involve children ≤12 years of age and/or include individuals over 18 without a separate analysis of younger children. If a systematic review for a specific intervention is identified that reports outcome separately for children 0-12 years of age, then we will exclude systematic reviews of the same intervention that involved children over 12 years of age without a separate analysis of younger children.

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Appendix D-3: PRISMA diagram

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Appendix D-4: References

Akemoglu, Y., Muharib, R., & Meadan, H. (2020). A systematic and quality review of parent implemented language and communication interventions conducted via telepractice. Journal of Behavioral Education, 29(2), 282–316.

Bejarano-Martín, Á., Canal-Bedia, R., Magán-Maganto, M., Fernández-Álvarez, C., Lóa-Jónsdóttir, S., Saemundsen, E., . . . Posada, M. Efficacy of focused social and communication intervention practices for young children with autism spectrum disorder: A meta-analysis. Early Childhood Research Quarterly, 51, 430–445.

Binns, A. V., & Oram Cardy, J. (2019). Developmental social pragmatic interventions for preschoolers with autism spectrum disorder: A systematic review. Autism & Developmental Language Impairments, 4(1), 1-18.

Boshoff, K., Bowen, H., Paton, H., Cameron-Smith, S., Graetz, S., Young, A., & Lane, K. (2020). Child development out- comes of DIR/Floortime TM-based programs: A systematic review. Canadian Journal of Occupational Therapy, 87(2), 153–164.

Case, L., & Yun, J. (2019). The effect of different intervention approaches on gross motor outcomes of children with autism spectrum disorder: A meta-analysis. Adapted Physical Activity Quarterly, 36, 501–526.

Chang, Y. C., & Locke, J. (2016). A systematic review of peer-mediated interventions for children with autism spectrum disorder. Research in Autism Spectrum Disorders, 27, 1–10.

Ferguson, J., Craig, E. A., & Dounavi, K. (2019). Telehealth as a model for providing behaviour analytic interventions to individuals with autism spectrum disorder: A systematic review. Journal of Autism and Developmental Disorders, 49, 582–616.

Flippin, M., Reszka, S., & Watson, L. R. (2010). Effectiveness of the picture exchange communication system (PECS) on communication and speech for children with autism spectrum disorders: A meta-analysis. American Journal of Speech-Language Pathology, 19, 178–195.

Fuller, E. A., & Kaiser, A. P. (2020). The effects of early intervention on social communication outcomes for children with autism spectrum disorder: A meta-analysis. Journal of Autism and Developmental Disorders, 50, 1683–1700.

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Appendix E: Primary and secondary education

Appendix E-1: Content analysis categories

Question 1: What are three problems that autistic people experience with education?

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Question 2: What do you think is causing these problems and sample quote from responses?

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“Re sensory issues - lack of understanding e.g., a (female) kid could prefer clothing that feels secure but uniform is a loose fitting dress. Only alternative option appears to be boys uniform but this has other social implications.” (ID 897)

“Lack of understanding and/or flexibility to accommodate changes to the sensory environment for autistic people. e.g., noisy corridors, not providing learning alternatives to participating in swimming carnivals (strong smells and noise), not providing accommodation alternatives on school camps to noisy bunk rooms” (ID 1131)

Accommodations and supports for autistic students are insufficient, and the capacity, knowledge and resources required to accommodate/support autistic students are lacking

(e.g., lack of ability/capacity to make accommodations; lack of understanding how to support students).

“| think a lack of flexibility around school rules and providing accommodations often comes from school staff not having adequate understanding/knowledge of autism (e.g., treating a student’s sensory sensitivity as a behavioural problem they can choose not to do, or a student getting in trouble for not demonstrating “Whole body listening” rather than recognising they may find it easier to listen without making eye contact).” (ID 817)

“There are tens of thousands of Non Verbal Autistic school students across the country, particularly in special schools who have NO means to communicate. Often, NO individualised AAC (high tech or low tech) & most teacher, special ED & assistants or aides aren’t familiar with using an AAC’s & the rights of the child to communicate, ALL day, every day, across every domain.” (ID 925)

10%

Teachers are unsupported and overworked (e.g., educators are time poor, under resourced, and overloaded)

“Education staff are overworked, underpaid, and given no incentive to pursue continuous professional development opportunities.” (ID 532)

“Teachers don’t have the time or the resources to support Autistic individuals and find it overwhelming. In many conversations with teachers they are typically empathetic and want to help, however they become exhausted because they find they can’t do the things they need to do properly and so what they are able to do doesn’t work” (ID 1006)

10%

Teaching methods, learning activities, content, or assessment may not be suitable for autistic children, or accommodate their needs

(e.g., pedagogy is one-size-fits-all; teaching methods don’t take into consideration challenges of autistic children (e.g., co-occurring ID).

“A lot of vital information is given verbally during lectures and our processing is different. It can be hard to figure out what information is needed or how to capture it all while the lecture is happening.” (ID 330)

“Graphic/visual representations are really hard to get right but really important for students with certain learning styles as they might not function as just a “reminder” of the concept the way it does for most, but to re-explain concepts over and over again that we fundamentally understand but cannot articulate well without prompting.” (ID 821)

Lack of society or community education about or acceptance of autism

(e.g., poor societal attitudes towards those who are divergent/different; societal unwillingness to change attitudes).

“A dominant narrative of autism which is driven by non-autistic voices who are given disproportionate media coverage in relation to autistic issues.” (ID 343)

8%

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“Social narrative around Autism being a disease or condition requiring cure instead of focusing on removing barriers to quality of life, celebrating strengths and being pro-autism in our acceptance of autistic people.” (ID 1020)

Lack of understanding of the heterogeneity of autism in terms of profile and needs (e.g., reliance on stereotypes; lack of awareness of the diversity of autistic students).

“Poor understanding of ASD and its highly variable presentations (e.g., interpreting some as oppositional), especially in biological females” (ID 677)

“Every person is different on the Autism Spectrum. Why tick one box when there are millions to tick. Not all Autistics are the same.” (ID 863)

Peers and others lack understanding of autistic social styles and preferences

(e.g., double empathy problem; communication breakdown between autistic and non-autistic students).

“A lack of education for non-autistic children on how autistic people socialise. If there’s no middle ground, all the pressure is put onto the autistic person to cross the divide in communication style which is a lot of energy and effort, which could otherwise be used to learn and participate in education.” (ID 21)

“Lack of education to children about neurodiversity - bullying is a recognized problem, but still not enough is being done to educate neurotypical children.” (ID 975)

12

Ableism/stigma/othering/safety/lack of tolerance/judgement

(e.g., ableist conceptions and design of schools; opportunistic and oppressive treatment of autistic people).

“Discriminatory attitudes towards children who display behaviours of concern” (ID 1052)

13

Teachers hold negative attitudes or having a lack of compassion towards, or interest in, autistic students.

(e.g., lack of care from mainstream education; lack of interest).

“| would say lack of awareness and understanding, but schools are given so many opportunities to learn that | can’t help but feel that there is a lack of interest in understanding and supporting, from some teachers, certainly not all” (ID 471)

Schools not communicating/collaborating with allied health professionals/disability services.

(e.g., schools need to allow more allied health visits to autistic students; to collaborate and consult with allied health professionals more).

“Lack of resources (including time) for allied health professionals to teach teachers and school staff about how to use AAC.” (ID 170)

6%

Class sizes are too large, the student to teacher ratio is poor and schools are understaffed (e.g., class sizes are too large; not enough staff or support staff).

“Outdated models of schooling - 1 teacher per class with limited or no access to team teaching and support from properly trained/qualified specialist teachers” (ID 703)

“Class sizes are too large. One teacher is expected to manage a class with several children individualised needs and this is an unrealistic expectation and quality education is not provided.” (ID 998)

6%

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Schools are often focused on behaviour and behaviourist strategies

(e.g., focus on behaviour rather than underlying needs; behaviour management strategies are reactive/punitive).

“Thinking we are behaving badly just for the fun of it etc. Concentrating on how we “disturb” other people’s lives instead of seeing how and why we are having a hard time.” (ID 342)

“It doesn’t help that because school is an extremely stressful environment for autistic children, they are often materially disruptive to classrooms, and so teachers see them as a problem that needs to be fixed, rather than as a person in a fragile emotional state.” (ID 784)

6%

17

Government, education departments and school leaders have not prioritised inclusion of autistic students.

(e.g., there is a lack of consequences for not following policy)

“Lack of understanding by Principals and the education department to know that students with ASD, have the “right” to an inclusive education to reach their full potential and to have the same rights as other neurotypical students.” (ID 171)

“Lack of oversight and accountability. Until there is something like a Disability Education Commissioner which can proactively investigate breaches and misconduct, educational institutions will continue to other-ise autistic students, cover up bullying, and mistreat disabled students as a whole.” (ID 1433)

5%

Support is lacking for undiagnosed autistic students, and diagnosis is delayed by wait times and teachers’ inability to recognise diverse autistic presentations

(e.g., delayed diagnosis; diagnosis increases access to supports in school).

“School does not understand that if a child has autism, that their simple screening in the school setting does not reverse a diagnosis made by clinical psychologist/speech pathologist/paediatrician” (ID 484)

“Access to timely assessment processes within the public system to support students with autism and educators. It can take years, particularly in regional areas. Until diagnosis is formalised, access to funding both through the education system and via NDIS leaves people struggling longer than necessary.” (ID 797)

5%

Autistic students mask or conform to neurotypical standards

(e.g., expectations of autistic students to mask and conform; forcing neuro-normative behaviours and expectations on children).

“The dominant deficit-based view of Autism being that Autistic children should be encouraged to conform socially and academically, rather than be valued intrinsically for their differences.” (ID 290)

“You make the child attempt to make all the change - psychologists, OT, Speech therapy - then wonder why they are so anxious and unhappy. They can’t be their true selves.” (ID 599)

5%

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Question 3: What do you think could prevent or reduce these problems and sample quote from responses?

% of all Factors that could prevent or reduce the problems experienced by autistic people in respondents ane relation to education and sample quotes from responses who stated this issue

Increasing pre-service and in-service training on autism for all school staff, and especially for educators

(e.g., training for staff/teachers/lecturers/tutors; training in university).

1 “Increased PD for ALL educators on the broader issues of neurodiversity, most notably its 41% heterogeneity and that one strategy is not EVER appropriate for EVERY student” (ID 354)

“Making PD on the issues that Autistics have with accessing appropriate education, and solutions, compulsory for all educators.” (ID 385)

Increasing educator and broader community awareness and acceptance of autism, and treating autistic students with respect, kindness, tolerance and empathy

2 (e.g., teach acceptance rather than trying to change neurodivergent individuals). 18%

“Public education and awareness programs to increase understanding of the diversity of autistic experience.” (ID 343)

Increased and improved funding and resources to provide autistic students with the staff and environment they need for an equitable learning experience

(e.g., funding to address sensory environment (light/sounds/sensory rooms); funding for teachers’ aides).

“Funding should be provided to schools to address the sensory aspects of the environments e.g., sounds, light, quiet spaces, sensory rooms” (ID 14)

“Better funding for LEARNING issues. Such as tutors at School or experienced Teacher Aides and give them the time they actually have been assigned for that child” (ID 793)

Actively consulting and collaborating with autistic and neurodivergent people, and employing more autistic teachers, consultants, policy/curriculum planners and leaders in education

(e.g., ask autistic people what they need and implement this; autistic input into school building design).

“It should be a requirement that a certain percentage of staff fly under the neurodivergent flag 4 themselves. Not only does this lend an autie voice to the situation academically speaking (thus 15% supporting the different ways auties learn or require support), it provides openly proud auties to be role models for not only ND children but also to NT children which can only lessen bullying and promote acceptance” (ID 63)

“Inclusion of the autistic voice as standard. Not ’increased“ Inclusion - this should be a non- negotiable prerequisite. “Nothing about us without us.”” (ID 68)

Ensuring schools are designed to minimise sensory overwhelm and include spaces that autistic people feel safe and comfortable

(e.g., environment modifications; quiet spaces enabled by universal design principles).

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“A purpose built sensory room in every school, where autistic students can go to have some quiet time.” (ID 530)

“Foster a more relaxed learning environment that is not the traditional desk set up. Allow the students to go to a safe place when needed whether it’s outside or in an area in the room.” (ID 594)

Reducing class sizes and increasing the number of teachers and aides/support staff in classes (e.g., reducing class sizes benefits everyone; more aides for autistic students)

“If schools reduced class sizes this would produce a lot of welcome change and opportunity. Reducing class sizes benefits everyone - students, teachers and other staff, as well as anyone in those cohorts who also happens to be autistic or neurodivergent.” (ID 72)

1%

Adapting pedagogy, instruction and assessment to better meet the needs of autistic students (e.g., neurodivergent pedagogy will benefit all students; permit alternative assessment types) “Develop autistic style teaching methods” (ID 477)

“Making educational content available in a range of contexts - lectures, videos, readings, images, hands on doing.” (ID 664)

11%

Increasing and improving education, information, and research on autism (e.g., additional autism research; neurodivergence education).

“More research should be done with diverse communities to better define Autism and give a clearer picture of this neurodivergence.” (ID 767)

“Educate the wider community about autism, break down the fear and stigma associated with a diagnosis” (ID 1443)

1%

Increased collaboration, communication, and planning between autistic students and their parents, teachers and allied health team

(e.g., listen to parents as they are experts on their child; all stakeholders planning together).

“More in depth conversations with parents/guardians/students with a carefully chosen team so that parents aren’t having to explain everything to each teacher every term for the rest of the schooling life. It’s exhausting, particularly for parents who are autistic.” (ID 1081)

“Establishment of better and more regular avenues of communication between school teachers, service providers and families.” (1D 1542)

1%

Increasing accommodations/individual plans for autistic students, as well as understanding of how and why to make these accommodations

(e.g., allowing personalised adjustment (not standard adjustments); information for teachers on what accommodations autistic students may need and why they are important).

“Allowing adjustments that are meaningful and personalised to actually help the individual rather than just selecting standard adjustments.” (ID 41)

“Information made available to educational professionals as to the likely requests from NDs for alternative treatment, and the reasons why such requests are not simply special pleading, but in fact a [sensible] way of assessing the true capabilities of NDs.” (1D 308)

10%

Providing multiple options for education settings and or educational options

“True inclusion - ensuring Autistic child can regulate at school and in the classroom. Not outside or at home. Outside the classroom is called exclusion.” (ID 359)

“Changing the education system to make it more flexible and inclusive.” (ID 533)

10%

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12

Government/school leadership initiatives to reduce stigma and tackle discrimination

(e.g., change in education policies so all students are supported; leadership committing to embracing diversity; government legislative changes).

“Leadership is not fully versed in the DDA [Disability Discrimination Act] and DSE [Disability Standards for Education] - they should have to pass a compulsory training and assessment on it every couple of years the same as we do CPR and Protective behaviours.” (ID 50)

“Mandatory reporting to outside authority if incidences of restraint and seclusion.” (ID 349)

9%

Adapting or developing the curriculum to enable autistic students to have choice, to study their interests, and to have their learning needs met

(e.g., re-imagining of the curriculum to be delivered through student directed learning; appropriate curriculum for those with intellectual disability).

“Allowing autistic people to create learning opportunities based on special interests.” (ID 91)

“Embedding understanding of invisible disabilities into curriculum, with concepts such as different ways of communicating, different ways of socialising, different ways of learning etc.” (ID 166)

7%

Increasing student access to autism diagnosis (e.g., fast track diagnosis; changes to assessments to reflect heterogeneity of autism profiles).

“Free diagnosis/functional assessments, etc.” (ID 288)

7%

Supporting educators to build relationships with, and meet the needs of, autistic students

(e.g., support for teachers to meet the needs of autistic students; support for staff and students; teachers need more support to develop relationships with autistic students).

“Ensuring teaching staff are supported through understanding and modelling inclusion in education” (ID 188)

“Focus on connection between teacher and student so that they can pick up early cues and prevent issues rather than react once it’s too late” (ID 929)

6%

Teaching all students about autism and autistic communication styles, in a neutral way, just as education is provided about cultural diversity

(e.g., teaching about different communication styles; bridge and understand differences).

“Greater education about neurodiversity at a young age in the same manner that cultural differences are explicitly taught.” (ID 74)

“Double empathy - teach all children from a young age about accepting the differences in neurobiology and that everyone is equal not less - everyone needs to learn about differences in communications styles and that one is not better than the other - just different” (ID 535)

6%

17

Increasing flexibility around delivery and enrolment options for autistic students

(e.g., flexibility for part time enrolment for autistic students; flexible delivery options (i.e., learn from home).

“More flexibility for kids with autism for part time enrolment or project-based learning.” (ID 194)

“Our daughter needed to get to the point that she was extremely depressed and suicidal, self- harming before we could access distance education. It was very distressing and traumatic and she has been working to find herself for the last 3 years at Sydney distance high school” (ID 357)

5%

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Using collaborative and supportive behaviour strategies and understanding reasons for behaviours

(e.g., teach kids to regulate instead of focussing on behaviour; develop affirming terminology/techniques for behaviour support).

“Behaviour management - develop supportive crisis strategies to reduce distress instead of punishment and trying to repress negative behaviour” (ID 81)

“So many behavioural issues are resulting from teachers not understanding the [sensitivities] that neurodivergent people have or their learning styes.” (ID 753)

5%

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Question 4: What is working well, or has worked well, in relation to autistic people in education?

% of all What is working well, or has worked well, for autistic people in education, and respondents sample quotes from responses who stated this issue

When educators have knowledge about autism, value autistic students and treat autistic students well

(e.g., when educators have positives attitudes towards autistic students; when autistic students are valued intrinsically and not pressured to conform or change)

“Individual educators who care and have lived experience” (ID 1545)

“As a professional advocate who often delivers PD on Neurodiversity to teachers, | am seeing an increasing number of them who are pretty passionate about learning more, and | am always very enthusiastic in affirming this when | meet them.” (ID 1467)

34%

When accommodations are made, and autistic students are supported at school

(e.g., when accommodations are made for autistic students around assessments/environment/curriculum; accommodations for communication methods).

2 “Adaptations to assessment and curriculum that are person-centred and respond to the 24% individual communication and sensory needs of the student.” (ID 1521)

“There is now a greater focus on accommodations and an awareness of the challenges for autistic people via personalised learning plans.” (ID 151)

When the curriculum, pedagogy and instruction methods are tailored to autistic students’ needs

(e.g., being flexible around learning processes; ensuring instruction is clear and direct).

3 “Educators who…acknowledge that ND individuals learn differently and that can include needing 18% to move, sensory changes, and executive functioning support” (ID163)

“For my child, child-directed learning. He learns an incredible amount but not in ‘conventional’ ways.” (ID 1170)

When attitudes or approaches to supporting autistic students are positive or neuro-affirming (e.g., when positive attitudes are taught to students; positive attitudes towards behaviour).

“Higher profile/raised awareness of autism through campaigns, charitable works, celebrities (e.g., 4 Chloe Hayden) and media (e.g., TV shows like The A Word or Atypical)” (ID 673) 17%

“| think peers are getting better at understanding their Neurodiverse peers (bullying aside). This doesn’t help the students who don’t openly identify as Autistic/ ND, but I believe that student peer attitudes are shifting somewhat.” (ID 1157)

When education institutions, health and disability professionals, autistic adults and families collaborate to support and listen to the autistic student

(e.g., collaboration with the autistic student, all stakeholders, allied health professionals, educators, autistic adults, parents).

5 “Timely, regular, clear, concise communication and shared goals between educational staff, 16% parents and support personnel! (therapists, support workers).” (ID 654)

“IEP meetings where the student is present and is empowered to speak for themselves and is seen as capable of doing so and is listened to. [This] began to happen from about year 9, for my [oldest] child, to a degree.” (ID 1419)

When the physical environment is adapted to autistic sensory needs

(e.g., better access to low sensory spaces/break out spaces). 14%

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“My art teacher let me sit in the art room by myself during lunch times. [I] could unmask, and either have a space where | could more easily focus on my assignments, or where [I] could be creative.” (ID 70)

“Classrooms that have a quiet space, allow fidget toys and movement breaks, dimmer lights, have visual [schedules], allow noise cancelling headphones, allow alternative to school uniforms and school shoes if their is a sensory issue around clothing.” (ID 427)

When learning delivery structures, modes and locations suit the autistic student

(e.g., when delivery modes and locations are flexible and suit the autistic student, including flexible/non face-to-face delivery modes/off campus and distance locations).

“Online/self paced learning has been amazing for myself and many Autistic people | know. It allows engagement as a pace that suits us and revision of verbal instruction is easier. There is less energy spent on masking and putting up with the barriers and more on learning the content.” (ID 772)

“Managed attendance - acknowledging that education is exhausting for students and allowing managed attendance is consultation with families” (ID 702)

13%

Nothing/not much/unsure

“Not much to be honest. Mostly these are bandaid strategies that work for that environment at a superficial level. This causes other problems later in life because real skills are not developed - lower rates of employment, education, etc. and social isolation, anxiety, depression, misdiagnosis, suicide, and all sorts of other damage.” (ID 627)

“Nothing has worked for me. | spoke to the teacher, spoke with the co-ordinator, wrote letters. nothing was done and they shrugged it off.” (ID 1039)

12%

When autistic students’ education is supported by policies, laws, leadership and/or funding (e.g., specific policies such as the Disability Act and Victorian Disability Inclusion Policy)

“Some progress in policies recognising that support for disabled students needs to extend beyond the classroom and include the school environment and participation more broadly (as seen in the recent Victorian Disability Inclusion policy)” (ID. 246)

“The principal of his school is passionate about supporting people with disabilities to achieve equitable access to the curriculum, and achieve their goals.” (ID 1251)

12%

When the education system works for the autistic student

(e.g., increased discussion around school systems for autistic students; availability of different school systems).

“At the time he was in year 9 it was recognised he was struggling both socially and academically and was finally removed from the mainstream classes and placed in Special ED class where he started thriving at long last. This recognition should have come much earlier.” (ID 1119)

11%

When class sizes are small and autistic students have 1:1 support form staff (e.g., small classrooms, 1:1 support/teaching).

“My daughter’s Autistic primary school is amazing. They have small class sizes (6-8 kids with a teacher and 2 assistants).” (ID 489)

“Individual educators who took the time (even if stretched resource-wise) to spend the time one- on-one for my child to learn and then once he had learned in an individual setting away from others, he could then apply this learning with his peers.” (ID 831)

11%

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12

When autistic students are supported to form strong social relationships at their place of education, free from bullying and criticism

(e.g., connecting with non-autistic peers, connecting with autistic peers).

“In situations where autistic people come together and learn with each other they can often help each-other.” (ID 218)

“Being grouped with friends (safe people) or with others who either like to stim loudly like us, or are sensory avoiders like us. Basically to work with peers who have similar tolerances for sensory stimuli.” (ID 1097)

9%

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Appendix E-2: Umbrella review search terms

The following search terms were used for the respective databases:

Cochrane, Embase, Emerald, ERIC, Medline, PsycINFO, PubMed, Web of Science

(autis* OR ASD OR ASC OR Asperger* OR pervasive developmental disorder OR PDD) AND (systematic review* OR scoping review OR narrative review OR systematic literature review* OR systematic quantitative literature review OR evidence synthes* OR meta-analy* OR meta- regression*) AND (teacher* OR assistant* OR coach* OR educat* OR trainer* OR instructor* OR tutor* OR school OR class OR inclusi*) AND (belief* OR perception* OR attitude* OR confidence OR self- esteem OR self-efficacy OR self-concept OR competence OR attitude* OR perspective* OR awareness OR knowledge OR pedagog* OR approach* OR teaching method* OR strateg* OR practice* OR instruct* OR support* OR program* OR accommodat* OR modif* OR adapt* OR adjust* OR develop* OR training OR professional development OR teacher education)

Scopus

(autis* OR ASD OR ASC OR Asperger* OR “pervasive developmental disorder” OR PDD) AND (“systematic review*” OR “scoping review” OR “narrative review” OR “systematic literature review*” OR “systematic quantitative literature review” OR “evidence synthes*” OR meta-analy* OR meta- regression*) AND (teacher* OR assistant* OR coach* OR educat* OR trainer* OR instructor* OR tutor* OR school OR class OR inclusi*) AND (belief* OR perception* OR attitude* OR confidence OR self- esteem OR self-efficacy OR self-concept OR competence OR attitude* OR perspective* OR awareness OR knowledge OR pedagog* OR approach* OR “teaching method*” OR strateg* OR practice* OR instruct* OR support* OR program* OR accommodat* OR modif* OR adapt* OR adjust* OR develop* OR training OR “professional development” OR “teacher education”)

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Appendix E-3: PRISMA diagram

Identification of studies via databases

Records identified from: Cochrane (n = 27), Embase (n = 924), Emerald (n = 165), ERIC (n = 178), Medline (n = 648), PsycINFO (n = 736), PubMed (n = 2,604), Scopus (n = 786), Web of Science (n = 938)

Total records: n = 7,006

Duplicate records removed automatically by Covidence and manually before screening (n = 4,486)

Records screened (n = 2,534)

Records excluded (n = 2,437)

Full-text reviews completed (n = 95)

Studies excluded following full-text review:

• Reason 1: Did not focus on teachers or teacher factors (n = 35)
• Reason 2: The focus was on child factors, such as behaviour modification (n = 33)
• Reason 3: Did not focus on autism or autism studies were not reported separately (n = 10)
• Reason 4: Review was not systematic (n = 7)

Studies included in umbrella review (n = 12)

(Template from Page, M. J., McKenzie, J. E., Bossuyt, P. M., Boutron, I., Hoffmann, T. C., Mulrow, C. D et al. (2021). The PRISMA 2020 statement: An updated guideline for reporting systematic reviews. BMJ, 372 (71). doi: 10.1136/bmj.n71)

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Appendix E-4: References

Blumenthal, L. S. (2019). Measuring teachers’ knowledge of autism and its treatment: a quantitative review. [PhD Dissertation]. St John’s University, New York.

Genovesi, E., Jakobsson, C., Nugent, L., Hanlon, C., & Hoekstra, R. A. (2022). Stakeholder experiences, attitudes and perspectives on inclusive education for children with developmental disabilities in sub-Saharan Africa: a systematic review of qualitative studies. Autism, 26(7), 1606– 1625. https://doi.org/10.1177/13623613221096208

Gómez-Marí, I., Sanz-Cervera, P., & Tárraga-Mínguez, R. (2021). Teachers’ knowledge regarding Autism Spectrum Disorder (ASD): a systematic review. Sustainability, 13(9), 5097. https://doi.org/10.3390/su13095097

Gómez-Marí, I., Sanz-Cervera, P., & Tárraga-Mínguez, R. (2022). Teachers’ attitudes toward Autism Spectrum Disorder: a systematic review. Education Sciences, 12(2), 138. https://doi.org/10.3390/educsci12020138

Han, C., Cumming, T. M. (2022). Teachers’ beliefs about the provision of education for students with Autism Spectrum Disorder: a systematic review. Review Journal of Autism and Developmental Disorders https://doi.org/10.1007/s40489-022-00350-6

Kossyvaki, L. (2021). Autism education in Greece at the beginning of the 21st century: reviewing the literature. Support for Learning, 36(2), 183–203. https://doi.org/10.1111/1467-9604.12350

Lüddeckens, J. (2021). Approaches to inclusion and social participation in school for adolescents with Autism Spectrum Conditions (ASC)—a systematic research review. Review Journal of Autism and Developmental Disorders, 8(1), 37–50. https://doi.org/10.1007/s40489-020-00209-8

Nuske, H. J., Hassrick, E. M., Bronstein, B., Hauptman, L., Aponte, C. A., Levato, L., Stahmer, A. C., Mandell, D. S., Mundy, P. C., Kasari, C., & Smith, T. (2019). Broken bridges—new school transitions for students with autism spectrum disorder: a systematic review on difficulties and strategies for success. Autism, 23(2), 306–325. https://doi.org/10.1177/1362361318754529

Petersson-Bloom, L. (2022). Strategies in supporting inclusive education for autistic students—a systematic review of qualitative research results. Autism & Developmental Language Impairments 7, 1–15 https://doi.org/10.1177/23969415221123429

Richter, M., Popa-Roch, M., & Clément, C. (2019). Successful transition from primary to secondary school for students with Autism Spectrum Disorder: a systematic literature review. Journal of Research in Childhood Education, 33(3), 382–398. https://doi.org/10.1080/02568543.2019.1630870

Russell, A., Scriney, A., & Smyth, S. (2022). Educator attitudes towards the inclusion of students with Autism Spectrum Disorders in mainstream education: a systematic review. Review Journal of Autism and Developmental Disorders https://doi.org/10.1007/s40489-022-00303-z

Tomlinson, C., Bond, C., & Hebron, J. (2020). The school experiences of autistic girls and adolescents: a systematic review. European Journal of Special Needs Education, 35(2), 203– 219. https://doi.org/10.1080/08856257.2019.1643154

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Appendix F: Postsecondary education

Appendix F-1: Umbrella review search terms

Databases Searched

(title, abstract, and key words)

• Cochrane
• EMBASE
• ERIC
• Emerald
• Medline
• PsycINFO
• Pubmed
• Scopus
• Web of Science
• Google scholar

Search Terms

The following search terms were used to identify relevant articles

Inclusion and exclusion criteria

General inclusion criteria are below. The study must meet all of these to be included.

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1. The article reports on a review of the literature that was undertaken systematically. A review will be considered “systematic” if it: (1) includes a clear statement of the purpose of the review; (2) describes the search strategy (i.e., key search terms, multiple relevant databases, specification of search limits); (3) indicates the criteria used to select studies for inclusion; and (4) presents all findings relevant to the main purpose of the review
2. The article must focus on autistic (human) participants, or if it is part of a review on broader conditions, the articles on autistic human participants must be reported on separately
3. The article must report on articles relating to an aspect of employment
4. The article must be published in a peer-reviewed journal.

The exclusion criteria are listed below. A study only needs to meet one of these criteria to be excluded:

1. Articles or reviews that do not meet the criteria to be considered “systematic” (for example (for example, narrative and unstructured reviews, primary studies, opinions, commentaries, letter, book chapters, conference abstracts or editorials)
2. Umbrella reviews, rapid reviews, or “reviews of reviews”
3. Reviews that do not focus on autism, do not report autistic participant studies separately or do not report on human studies.

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Appendix F-2: PRISMA diagram

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Appendix F-3: References

Adams, D., Simpson, K., Davies, L., Campbell, C., & Macdonald, L. (2019). Online learning for university students on the autism spectrum: A systematic review and questionnaire study. Australasian Journal of Educational Technology, 35(6), 111-131.

Anderson, A. H., Stephenson, J., & Carter, M. (2017). A systematic literature review of the experiences and supports of students with autism spectrum disorder in post-secondary education. Research in Autism Spectrum Disorders, 39, 33-53.

Anderson, A. H., Stephenson, J., Carter, M., & Carlon, S. (2019). A systematic literature review of empirical research on postsecondary students with autism spectrum disorder. Journal of Autism and Developmental Disorders, 49, 1531-1558.

Dallas, B. K., Ramisch, J. L., & McGowan, B. (2015). Students with autism spectrum disorder and the role of family in postsecondary settings: A systematic review of the literature. Journal of Postsecondary Education and Disability, 28(2), 135-147.

Davis, M. T., Watts, G. W., & López, E. J. (2021). A systematic review of firsthand experiences and supports for students with autism spectrum disorder in higher education. Research in Autism Spectrum Disorders, 84, 101769.

Duerksen, K., Besney, R., Ames, M., & McMorris, C. A. (2021). Supporting autistic adults in postsecondary settings: a systematic review of peer mentorship programs. Autism in Adulthood, 3(1), 85-99.

Flegenheimer, C., & Scherf, K. S. (2022). College as a developmental context for emerging adulthood in autism: A systematic review of what we know and where we go from here. Journal of Autism and Developmental Disorders, 52(5), 2075-2097.

Furuhashi, Y. (2021). Support for Higher Education Students with Autism Spectrum Disorder. Psychology, 12(4), 567-579.

Gelbar, N. W., Smith, I., & Reichow, B. (2014). Systematic review of articles describing experience and supports of individuals with autism enrolled in college and university programs. Journal of Autism and Developmental Disorders, 44, 2593-2601.

Kuder, S.J., Accardo, A. (2018). What works for college students with autism spectrum disorder. Journal of Autism and Development Disorders, 48, 722–731.

Kuder, S. J., Accardo, A. L., & Bomgardner, E. M. (2021). Mental health and university students on the autism spectrum: A literature review. Review Journal of Autism and Developmental Disorders, 8, 421-435.

Morris, I. F., Matta, C., & Fung, L. K. (2022). A scoping review of peer mentoring programs for autistic college students. Review Journal of Autism and Developmental Disorders, 1-18.

Nachman, B. R. (2020). Enhancing transition programming for college students with autism: A systematic literature review. Journal of Postsecondary Education and Disability, 33(1), 81-95.

Nguyen, L., Jack, S., Ketelaar, M., Di Rezze, B., Soper, A. K., & Gorter, J. W. (2020). Understanding the essential components and experiences of youth with autism spectrum disorders in peer mentorship programmes during the transition to adulthood: A qualitative ethnography. Child: Care, Health and Development, 46(6), 667-681. meta-

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Nuske, A., Rillotta, F., Bellon, M., & Richdale, A. (2019). Transition to higher education for students with autism: A systematic literature review. Journal of Diversity in Higher Education, 12(3), 280- 295.

Paskins, R. T., Brady, A. M., & Schultz, J. C. (2018). Applied interventions in college settings to assist adult students with autism spectrum disorder: A systematic review of the literature. Journal of Applied Rehabilitation Counseling, 49(3), 39-45.

Stark, M. D., & Lindo, E. J. (2022). Executive functioning supports for college students with an autism spectrum disorder. Review Journal of Autism and Developmental Disorders, 1-11.

Toor, N., Hanley, T., & Hebron, J. (2016). The facilitators, obstacles and needs of individuals with autism spectrum conditions accessing further and higher education: A systematic review. Journal of Psychologists and Counsellors in Schools, 26(2), 166-190.

Widman, C. J., & Lopez-Reyna, N. A. (2020). Supports for postsecondary students with autism spectrum disorder: A systematic review. Journal of autism and developmental disorders, 50(9), 3166-3178.

Zeedyk, S. M., Tipton, L. A., & Blacher, J. (2016). Educational supports for high functioning youth with ASD: The postsecondary pathway to college. Focus on Autism and Other Developmental Disabilities, 31(1), 37-48.

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Appendix G: Employment

Appendix G-1: Content analysis categories

Question 1: What are three problems that autistic people experience with employment?

% of all Problems experienced by autistic people in relation to employment and sample respondents quote from responses who stated this issue

Experiencing discrimination, stigma, stereotyping, and bullying (e.g., Autistic people are suffering discrimination, stigma, stereotyping and bullying because of their autism and this is affecting their ability to gain and/or maintain employment)

“Discrimination in the workplace. Employers will not accept difference as a part of the application process, and if they do, you are shoved into some sort of “autism appropriate” occupation.” (ID 935)

31%

Access to flexible work environment and supports from employers

(e.g., Autistic people are having difficulty accessing supports or flexibility in the workplace that enable them to work well.)

2 “Workplace accommodations that are being asked for are being denied, ignored or “forgotten” 30% about.” (ID 162)

“Lack of freedom in some workplaces to do work in way that suits (e.g., everyone having to do work in same way and in same place rather than having freedom to work in quiet space or in way that still gets job done but feels more natural to the autistic person).” (ID 1022)

Challenges of navigating the neurotypical socialisation governing workplaces

(e.g., It can be difficult for autistic people to “fit in” at work because the way they communicate 3= and socialise may be different.) 27%

“Being misunderstood, and considered ‘rude’ in the workplace, for example from not saying hello to everyone in the morning, or being too blunt with others.” (ID 1322)

Lack of understanding about autism and the capabilities and needs of autistic people

(e.g., Many employers and co-workers have very little knowledge about the strengths and needs of autistic employees.)

“Very little understanding concerning autism with employers.” (ID 452)

27%

Navigating how to find a job and its related processes

(e.g., attending interviews etc, can be challenging when you may not communicate and behave in the same way as neurotypical people.)

“Speaking for myself, getting though an interview to get a job felt like a major challenge, why | haven’t changed companies in many years. Small issues for social norm like struggling with eye contact and small talk through to talking about self and thinking on the spot, topped off with rejection sensitive dysphoria.” (ID 911)

24%

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Workplaces not suitable for autistic people (e.g., Autistic people often feel uncomfortable in their workplace)

“Environmental barriers such as open plan offices, noisy and bright environments, no options for low-sensory spaces to work in or have breaks in.” (ID 1494)

12%

Workplace not accommodating for sensory issues

(e.g., The sensory issues of autistic people are not taken into account and accommodations are not always made by employers.)

“Working environments are not set up to accommodate individuals with sensory issues (uncomfortable chairs, loud music, open offices, fluorescent lights.” (ID 1215)

10%

Keeping a job and meeting its requirements

(e.g., Autistic people may have challenges in keeping a job and meeting the usual requirements expected of employees.)

“Maintaining employment due to demands that lead to Autistic burnout living.” (ID 1330)

“Work schedules not accommodating for periods of regulation after intense periods of high social demand.” (ID 602)

10%

Lack of training about working with an autistic person

(e.g., Most employers and work colleagues do not have any training in how to interact and work with autistic people.)

“Employers/Employees not taking the time to actively listen, learn and understand the person, how they see things.” (ID 1285)

9%

Limited job opportunities for autistic people (e.g., Job opportunities for autistic people may be limited.)

“Hard to get employed sometimes due to many reasons such as presenting awkward/shy/weird in interviews, or feeling anxious to apply for jobs in fear of the unknown- in my case, it was easy to get employed for a job | applied for but | found that | burnt out very quickly and had to quit after 6 months” (ID 1472)

9%

Workplace demands being incongruent with autistic traits

“Their honesty makes them enemies of co-workers and superiors because they are unaware of the social hierarchy, and don’t understand that people take offence at honest evaluations of reality, which is observed by the autistic outside the social awareness that their truthful evaluation of reality puts others and their performance in question.” (ID 469)

8%

Fear of disclosing diagnosis

“People with autism find it hard to disclose being autistic when apply to and maintaining employment still. As Employers still see people with autism as being a liability, and should be treated as such. This can lead to having people with autism being let go or not being hired because of reasons related to their disability but not strictly their disability.” (ID 940)

8%

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Getting a job — lack of support or practical guidance

“In my experience with master 19, there are no specific strategies in place to help him get a job, no training or prospects, no workplace training or anything. His CBS COMMUNITY BRIDGING PROGRAM, are not tailored to his needs.” (ID 1350)

“Not enough support people for extended periods of time to support the people transitioning into the workforce.” (ID 1331)

7%

Deficit-based model/ people are dismissive of abilities

“Colleagues and superiors underestimating our abilities due to our behaviours such as stimming.” (ID 1297)

“Not being competitive with job applications, neurodiversity is generally not seen as an advantage and a judged as less desirable in interviews or from resumes (if it is mentioned).” (ID 180)

7%

Burn-out and fatigue

“Burnout from working multiple days in a row.” (ID 1097)

7%

In the job: lack of communication ,task instructions from management/work

“Lack of clear communication eg work requests are implied.” (iD 245)

6%

Selection for advancement - leadership/ management roles

“Much of promotions/salary increases is not tied to actual performance but more to ‘How good can someone bargain’, ‘How good can they sell themselves’, ‘How much are they liked by their superior).” (iD 374)

“Performance reviews and management which are biased towards neurotypical staff.” (ID 481)

5%

Fitting in — Masking

“Masking to appear neurotypical causes burnout.” (ID 51)

“Burnout due to masking - Lack of understanding in the workplace (communication differences, uniform requirements, etc).” (ID 288)

“Having to mask to look normal rather than being able to show passion.” (ID 1169)

5%

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Question 2: What do you think is causing these problems?

% of all Factors causing the problems experienced by autistic people in relation to respondents Bank employment and sample quote from responses. who stated this issue

Lack of understanding, awareness or acceptance of autistic people, leading to ignorance and misinformation

(e.g., There is a general lack of understanding, awareness and acceptance of autism in the community. This leads to ignorance and misinformation being perpetuated in the workplace.)

“Ignorance and stereotyping about autism. Being scared of difference, being scared of problems.” (ID 48)

58%

Lack of training and education about autism in the workplace

(e.g., Very few employers, HR officers or other staff have any education or training about autism and how it might impact employees.)

“HR understanding of what autism is, inclusion education for all staff members.” (ID 233)

32%

Lack of support from employers

(e.g., Many employers do not give adequate support or accommodations to their autistic employees.)

“Lack of accommodations in workplaces for autistic people.” (ID 151)

“Lack of ongoing support and empowerment to sustain and retain people once they commence work.” (ID 959)

31%

Workplaces’ ableist culture and limited willingness to change.

(e.g., A lot of employers are not willing to make changes to the ways they have always done things.)

“Inability to adapt to change, update knowledge and show compassion to autistic employees.” (ID 753)

26%

Discrimination, stigma, stereotyping, and bullying at work

(e.g., Autistic people are often a target of workplace discrimination or bullying.)

“Discrimination - which is hidden, not overt enough to fight.” (ID 639)

“Co-workers perception of flexibility and supports as preferential treatment increasing potential for bullying.” (ID 1020)

24%

Communication and interaction issues

(e.g., There is a lack of understanding that autistic people may communicate or interact with people differently.)

“Being reprimanded and discouraged for communicating in more comfortable ways i.e. email rather than face-to-face, or needing to ‘smile’ to be considered friendly.” (ID 842)

21%

A workplace culture dominated by deficit-based models of autism and not acknowledging the autistic employees’ strengths

(e.g., Most employers seem to know about the challenges that autistic may bring to the workplace, but know nothing about their strengths.

“Lack of knowledge about the special skills, talents, attributes, thinking, and communication styles people with autism have and can bring to a workplace.” (ID 1440)

15%

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Finding a job can be taxing for autistic people

(e.g., Very few accommodations are offered to or made for autistic people which would make the process of getting a job easier for them.)

“The people making the recruitment decisions and then managing staff don’t know anything about autism and/or don’t communicate with the autistic person to ask what they need to participate in recruitment processes or function in their role.” (ID 159)

13%

A dominant capitalist culture (e.g., Profits are valued more highly than people.)

“Capitalism. Yeah | know, but a system that atits core values profit ahead of societal good definitely contributes.” (ID 1075)

9%

Limited job opportunities for autistic people (e.g., potential employers not being willing to take a chance on employing an autistic person.)

“Attitudes that we will cost money to accommodate so its not viable to employ us.” (ID 1410)

8%

Workplace environment not accommodating for autistic people’s needs (e.g., The needs of autistic people are often not able to be met in the workplace environment)

“Office layouts, particularly open-plan or shared offices, without individual offices, or quiet places to work. This environment, as well as having to mask / camouflage for extended periods of time, is exhausting to neurodiverse people, and actually prevents me from working effectively.” (ID 1458)

8%

Limited support available to autistic people in workplace

(e.g., Some employers expect the autistic employee to work out what accommodations they want, rather than working with them to accommodate their needs).

“Placing the burden on people with disabilities to actively set out reasonable adjustments that can be made.” (ID 873)

8%

Lack of flexible working options

(e.g., Many employers do not realise that accommodating for autistic needs will increase productivity; do not allow flexible working arrangements.)

“Companies believing that flexible working arrangements will decrease productivity or needing to be open during business hours and needing employees to work then.” (ID 1051)

8%

Lack of support (incl DES problems, services)

“Disability employment services employ untrained and ignorant people, many will push autistic people into roles they wouldn’t succeed in and force them to undergo training with organisations that are unable to provide learning support.” (ID 81)

“Many autistic adults are just thrown onto Jobseeker or The DSP [Disability Support Pension] and left to their own resources, hopefully with a carer to assist. There is no suggestion of actually finding them a job with an authorised employer, nor is there any suggestion of their job provider attending an interview with them, they are literally left to fend for themselves. Carers (if they have any) are then involved in trying to help the person find work.” (ID 915)

6%

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Workplaces not suitable - difficult to meet expectations, not enough sick leave, unstable jobs

“Unnecessary/unfair expectations about what is expected at work, besides doing the job you are paid to do.” (ID 157)

“Lack of willingness to make changes - actually have people working in different ways/times in a work setting as it ‘might not be fair on the average work staff. Missed the whole point.” (ID 1096)

6%

Lack of financial support/ incentives for employers, Government funding

“No financial incentives or penalties for employers to fulfil obligations in providing a safe supportive workplace.” (ID 134)

“Lack of knowledge and awareness. Perceived lack of time and/or funding to implement inclusive processes and procedures and invest in physically accessible workplaces.” (ID 558)

6%

17

Education and training is lacking for autistic people

“Lack of education and programs that adequately support the rights of autistic people to have access to employment that is safe and meaningful to them.” (ID 624)

“Difficulty getting post school training in TAFE or other institutions.” (ID 1208)

5%

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Question 3: What do you think could prevent or reduce these problems?

% of all Factors that could prevent or reduce the problems experienced by autistic people in respondents 3 relation to employment and sample quote from responses who stated this issue

Education and training for employers and staff at workplaces

(e.g., Improving education and training about autism for all staff would improve understanding, 1 awareness and acceptance of autistic employees.) 36%

“Training for employers and people generally around what autism actually is. Social health campaigns around autism, neurodiversity and disability in general may also help.” (ID 882)

Accommodations, mentorship, and supports from employers

(e.g., Making accommodations and providing mentors and/or other required supports to autistic 2 employees will enable them to work to the best of their ability.) 33%

“Accommodations within the workplace to enable autistic people to work to the best of their ability.” (ID 1158)

Realistic representations of autism in social media, showing what employing an autistic person means

(e.g., There needs to be more realistic depictions in the media of autistic people and what it is like to employ an autistic person. This would give potential employers a better understanding of what it might look like for them.)

“Increased promotion of what employing an autistic person looks like and avoid standardised perceptions -i.e., they are great at IT and prefer to work on their own because they don’t like making friends.” (ID 690)

“Autistic people being showcased, promoted and presented as role models within their workplaces. Reframing of autistic people being different, not difficult.” (ID 852)

14%

Improved understanding of autistic strengths

(e.g., There needs to be a better understanding of the strengths that autistic people can bring to the workplace.)

4 “Start valuing people as people and believing that they can be contributing members of society.” 13% (ID 1251)

“Asking people about their strengths and preferences and accommodating those where possible.” (ID 440)

Training and accommodations for autistic people applying for a job

(e.g., Potential employers need to make adjustments to the process of employing people, so it will be more inclusive.)

“Relook at how we value workers in a society, what is required in a job interview and what is unnecessary. (e.g. If you have typed up a resume and are applying online, you don’t need to input your resume into specific boxes, and then upload your resume and a cover letter that doesn’t get read. That is so difficult for a neurodivergent person to complete! So many steps.” (ID 935)

11%

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Increased financial support/ incentives for employers, government funding (e.g., The government should give financial support to employers to employ more autistic people.)

“Financial incentives for private businesses to hire and retain autistic people e.g., no payroll tax on autistic employees, along with financial penalties for discriminating against disabled employees which are strong enough to deter and easy to enforce so that they are actually effective.” (ID 195)

“To help influence societal change enforce quota systems in all government departments to employ people with autism. Allow government to act instead of just talk. Actively advertise and communicate the benefits of employing people with autism and celebrate the unique skills, talents and qualities they bring to a workplace. We’re not all good just at IT stuff!” (ID 1436)

11%

Improve understanding, awareness and acceptance of autism in the workplace

(e.g., Employers and other staff should have a better understanding and awareness of autism and be more accepting of autistic differences)

“Acceptance of different work styles and preferences, including for sensory regulation.” (ID 187)

“Increased employer knowledge and understanding of how autism could effect an individual in the workplace and how best to support them with succeeding.” (ID 372)

11%

Boost inclusivity culture at workplace.

(e.g., There needs to be more willingness to change and improve attitudes towards including more diverse people)

“A top-down culture change that is precipitated by open communication about differences. Changes to policies and procedures affected by the employee lifecycle. Opening up a channel for employees with neurodiversity (or disability in general) where there is forum for constant communication to senior levels of management. Awareness training for all would be- or already are- managers, regardless of whether their employees have disclosed disability.” (ID 1415)

11%

Improve discrimination, stigma, stereotyping and bullying in the workplace

(e.g., There should be a willingness to make changes to workplace procedures and policies to protect autistic people)

“Improve stigma around autism by education (sic) the public. Supports in the workplace available to all” (ID 1411)

“More stringent policies that businesses must comply to for Neurodiverse people Easier way to report any instances of bias and other negative issues Rewarding businesses for being neurodiverse friendly. Not superficially ND [neurodiverse] friendly.” (ID 417)

8%

Develop job readiness programs for autistic people

(e.g., Autistic people need help to prepare for work from organisations and people such as Disability Employment Services, support workers and other programs.)

“Having more readily available access to workplace training that can be geared to a variety of workplace types and sizes.” (ID 330)

8%

Listen to the thoughts and ideas that autistic people have

(e.g., Autistic people often know what they want or need, so ask them to share that information)

“Fund autistic led organisations to help autistic workers develop self-advocacy skills.” (1D 343)

“Include input from autistic staff in designing position descriptions.” (ID 532)

8%

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Work-place suitability - improve building design/ physical environment to account for sensory needs

“Consideration given to environments and work practices that are good for all humans - spaces that dampen noise or allow for quieter spaces for de-regulation of emotions.” (ID 41)

“Building design should incorporate sensory friendly design. This is a universal design aspect that actually could benefit everyone not just Autistic people so should be standard practice.” (ID 90)

5%

12=

More/ better access to support

“Support to prepare for work, find suitable employment prospects, develop application and interview skills, understand customer service, develop social communication skills for the workplace.” (ID 408)

“Autistic governing body- Someone who knows work rules in and out that can appear on behalf of the autistic person. Anywhere at any time. Is payed by the government.” (ID 1125)

5%

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Question 4: What is working well, or has worked well, in relation to autistic people accessing employment?

% of all What is working well, or has worked well, in relation to autistic people accessing employment respondents and sample quote from responses who stated this issue

Flexible workplace arrangements

1 (e.g., Autistic people work best when they feel supported and their workplace needs are being met; 24% flexibility contributes significantly to that.)

“Giving reasonable accommodations to the work environment to make it more accessible.” (ID 51)

Supportive employers who promote inclusivity

(e.g., Inclusive employers support autistic employees to work the way that suits them best.)

“My first two bosses gave me lots of space to grow my own interests and they also allowed me extra time. They celebrated when | was right and also when | was wrong. | had two great bosses.” (ID 185)

23%

Accommodations at work supporting autistic peoples’ sensory needs

3 (e.g., When autistic sensory needs are met, autistic people feel valued and can work well.) 22% “Sensory needs met whether it’s regular movement breaks, lighting dimmed, work from home so noise and other sensory needs are met.” (ID 75)

Colleagues who embrace inclusivity and neurodiversity

(e.g., When other staff are accepting of neurodiversity, it is easier to feel comfortable at work.)

“People who are understanding and accommodating of differences even if they do not experience those challenges themselves.” (ID 422)

17%

Employment that matches autistic people’s interests or strengths 5 (e.g., Autistic people work exceptionally well when their work tasks match their strengths.) 12% “If you manage to get a job and itis a role that suits your strengths you do an amazing job.” (ID 88)

Nothing has worked or I do not know

(e.g., For some people, nothing they have tried seems to have worked, or they do not know what is likely to work for them.)

6 “Nothing has worked well. ASD [autism] is taken advantage of, their technical ability, paid less for 11% working harder, paid less than anyone else, male or female. Taken advantage of their deep and often knowledge especially their special interests.” (ID 469)

“| have no idea. I’ve not managed to keep one job for longer than a few years.” (ID 436)

Educating employers and their staff about autism

(e.g., Having education sessions about autism and neurodiversity can help staff to be more accepting and understanding.)

“Workplace education campaigns focused on neurodivergent conditions (I lead this recently at my workplace with great success).” (ID 246)

7%

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Workplace routines, consistency, and clear instructions

(e.g., Having regular routines and clear instructions helps autistic people to be competent and confident at work.)

“Explicit workplace feedback, with constructive information to help them know how to improve.” (ID 1079)

6%

Supportive and autism-friendly recruitment process (e.g., Changing the recruitment process to make it more inclusive can help autistic people to gain employment.)

“A great example is Reframing Autism’s options when interviewing for a job. For example, do you want to answer questions in writing, in a recording or in a telephone interview? This is a really good practice, I think” (ID 479)

5%

Supported employment programs

(e.g., Supported employment can be a meaningful alternative for those who may find employment on the open market to be unsuitable.)

“Supported employment is a viable option for some autistic people like my son - his provider [name of a service provider] in WA is amazing - they support his mental health challenges every day and expand his work capacity. Lots of disability advocates criticise supported employment but it does have a place for some people.” (ID 859)

5%

Autism-specific employment or internship opportunities

(e.g., Positions that are created specifically for autistic people give them opportunities to learn and show employers their skills and strengths.)

“Specialist internships for autistic people (a long work trial where they get paid, but are also learning).” (ID 190)

5%

Being self-employed or work in a family business

(e.g., Self-employment or family businesses give autistic people opportunities to utilise their strengths in a workplace of their own, or with people who know them well, who will support them to succeed.)

“Supporting entrepreneurship and self-employment for autistic people. | was self-employed for much of my working career so | could design my working schedule to suit.” (ID 190)

5%

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Appendix G-2: Umbrella review search terms

Databases Searched

(title, abstract, and key words)

• CINAHL
• Cochrane
• EMBASE
• ERIC
• Emerald
• Medline
• PsycINFO
• Pubmed
• Scopus
• Web of Science
• Google scholar

Search Terms

The following search terms were used to identify relevant articles

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Inclusion and exclusion criteria

General inclusion criteria are below. The study must meet all of these to be included.

1. The article reports on a review of the literature that was undertaken systematically. A review will be considered “systematic” if it: (1) includes a clear statement of the purpose of the review; (2) describes the search strategy (i.e., key search terms, multiple relevant databases, specification of search limits); (3) indicates the criteria used to select studies for inclusion; and (4) presents all findings relevant to the main purpose of the review
2. The article must focus on autistic (human) participants, or if it is part of a review on broader conditions, the articles on autistic human participants must be reported on separately
3. The article must report on articles relating to an aspect of employment
4. The article must be published in a peer-reviewed journal

The exclusion criteria are listed below. A study only needs to meet one of these criteria to be excluded:

1. Articles or reviews that do not meet the criteria to be considered “systematic” (for example (for example, narrative and unstructured reviews, primary studies, opinions, commentaries, letter, book chapters, conference abstracts or editorials)
2. Umbrella reviews, rapid reviews, or “reviews of reviews”
3. Reviews that do not focus on autism, do not report autistic participant studies separately or do not report on human studies.

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Appendix G-3: PRISMA diagram

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Appendix G-4: References

Anderson, A., Moore, D. W., Rausa, V. C., Finkelstein, S., Pearl, S., & Stevenson, M. (2017). A Systematic Review of Interventions for Adults with Autism Spectrum Disorder to Promote Employment. Review Journal of Autism and Developmental Disorders, 4(1), 26-38. https://doi.org/10.1007/s40489-016-0094-9

Barbaro, D., & Shankardass, K. (2022). Work-Related Social Skills Interventions for Individuals with Autism Spectrum Disorder Throughout the Life Course. Review Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s40489-022-00317-7

Bunt, D., van Kessel, R., Hoekstra, R. A., Czabanowska, K., Brayne, C., Baron-Cohen, S., & Roman- Urrestarazu, A. (2020). Quotas, and Anti-discrimination Policies Relating to Autism in the EU: Scoping Review and Policy Mapping in Germany, France, Netherlands, United Kingdom, Slovakia, Poland, and Romania. Autism Research, 13(8), 1397-1417. https://doi.org/10.1002/aur.2315

Bross, L. A., Travers, J. C., Wills, H. P., Huffman, J. M., Watson, E. K., Morningstar, M. E., & Boyd, B. A. (2020). Effects of video modeling for young adults with autism in community employment settings. Career Development and Transition for Exceptional Individuals, 43(4), 209-225.

Bury, S., Hedley, D., Uljarevic, M., & Gal, E. (2019). The autism advantage at work: A systematic review of the evidence concerning the relationship between restricted and repetitive behaviours and interests and work performance. Journal of Intellectual Disability Research, 63(7)(7), 652.

Carnett, A., Neely, L., Gardiner, S., Kirkpatrick, M., Quarles, J., & Christopher, K. (2022). Systematic Review of Virtual Reality in Behavioral Interventions for Individuals with Autism. Advances in Neurodevelopmental Disorders, 1-17.

Chen, B. B., & Yakubova, G. (2021). Evaluating the Effects of Video-Based Intervention to Teach Vocational Skills to Transition-Age Youth with Autism Spectrum Disorder: an Evidence-Based Systematic Review. Review Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s40489-021-00282-7

Davis, K. S., Kennedy, S. A., Dallavecchia, A., Skolasky, R. L., & Gordon, B. (2019). Psychoeducational Interventions for Adults With Level 3 Autism Spectrum Disorder: A 50-Year Systematic Review. Cognitive and Behavioral Neurology, 32(3), 139-163. https://doi.org/10.1097/wnn.0000000000000201

DePape, A.-M., & Lindsay, S. (2016). Lived Experiences from the Perspective of Individuals with Autism Spectrum Disorder: A Qualitative Meta-Synthesis. Focus on Autism and Other Developmental Disabilities, 31(1), 60-71. https://doi.org/https://doi.org/10.1177/1088357615587504

Eilenberg, J. S., Paff, M., Harrison, A. J., & Long, K. A. (2019). Disparities Based on Race, Ethnicity, and Socioeconomic Status Over the Transition to Adulthood Among Adolescents and Young Adults on the Autism Spectrum: a Systematic Review. Current Psychiatry Reports, 21(5), Article 32. https://doi.org/10.1007/s11920-019-1016-1

Fong, C. J., Taylor, J., Berdyyeva, A., McClelland, A. M., Murphy, K. M., & Westbrook, J. D. (2021). Interventions for improving employment outcomes for persons with autism spectrum disorders: A systematic review update. Campbell Systematic Reviews, 17(3), e1185.

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Frentzel, E., Murphy, K. M., Geyman, Z., Fong, C., & Rasmussen, J. (2022). Using Research-Based Strategies to Improve Job-Related Social and Communication Skills Among Adults With Autism Spectrum Disorder: A Scoping Review. Journal of Applied Rehabilitation Counseling, 53(4), 279- 302. https://doi.org/10.1891/JARC-2021-0013

Hayward, S. M., McVilly, K. R., & Stokes, M. A. (2018). Challenges for females with high functioning autism in the workplace: a systematic review. Disability & Rehabilitation, 40(3), 249-258. https://doi.org/10.1080/09638288.2016.1254284

Holwerda, A., van der Klink, J. J., Groothoff, J. W., & Brouwer, S. (2012). Predictors for work participation in individuals with an autism spectrum disorder: A systematic review. Journal of Occupational Rehabilitation, 22(3), 333-352.

Hedley, D., Uljarević, M., Cameron, L., Halder, S., Richdale, A., & Dissanayake, C. (2017). Employment programmes and interventions targeting adults with autism spectrum disorder: A systematic review of the literature. Autism, 21(8), 929-941.

Jacob, A., Scott, M., Falkmer, M., & Falkmer, T. (2015). The costs and benefits of employing an adult with autism spectrum disorder: A systematic review. Plos one, 10(10), e0139896. https://doi.org/10.1371/journal.pone.0139896

Le, T., Rodrigues, B., & Hess, L. G. (2021). Video Modeling Use in Work Occupations for People With Autism: A Systematic Review. American Journal of Occupational Therapy, 75(3), 1-13. https://doi.org/10.5014/ajot.2021.041921

Lindsay, S., Osten, V., Rezai, M., & Bui, S. (2021). Disclosure and workplace accommodations for people with autism: a systematic review. Disability & Rehabilitation, 43(5), 597-610. https://doi.org/10.1080/09638288.2019.1635658

Lorenc, T., Rodgers, M., Marshall, D., Melton, H., Rees, R., Wright, K., & Sowden, A. (2018). Support for adults with autism spectrum disorder without intellectual impairment: Systematic review. Autism, 22(6), 654-668. https://doi.org/10.1177/1362361317698939

Lounds Taylor, J., McPheeters, M. K., Sathe, N. A., Dove, D., Veenstra-VanderWeele, J., & Warren, Z. (2012). A Systematic Review of Vocational Interventions for Young Adults With Autism Spectrum Disorders. Pediatrics, 130(3), 531-538. https://doi.org/10.1542/peds.2012-0682

Khalifa, G., Sharif, Z., Sultan, M., & Di Rezze, B. (2020). Workplace accommodations for adults with autism spectrum disorder: A scoping review. Disability and rehabilitation, 42(9), 1316-1331. https://doi.org/10.1080/09638288.2018.1527952

Mak, G., & Zhao, L. (2020). A systematic review: the application of virtual reality on the skill-specific performance in people with ASD. Interactive Learning Environments, 1-14.

Munandar, V. D., Morningstar, M. E., & Carlson, S. R. (2020). A systematic literature review of video- based interventions to improve integrated competitive employment skills among youth and adults with Autism Spectrum Disorder. Journal of Vocational Rehabilitation, 53(1), 29-41. https://doi.org/10.3233/JVR-201083

Murray, N., Hatfield, M., Falkmer, M., & Falkmer, T. (2016). Evaluation of career planning tools for use with individuals with autism spectrum disorder: A systematic review. Research in Autism Spectrum Disorders, 23, 188-202. https://doi.org/10.1016/j.rasd.2015.12.007

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Ogawa, Y., Itani, O., Jike, M., & Watanabe, N. (2021). Psychosocial Interventions for Employment of Individuals with Autism Spectrum Disorder: a Systematic Review and Meta-analysis of Randomized Clinical Trials. Review Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s40489-021-00285-4

Pillay, Y., & Brownlow, C. (2017). Predictors of Successful Employment Outcomes for Adolescents with Autism Spectrum Disorders: A Systematic Literature Review. Review Journal of Autism and Developmental Disorders, 4(1), 1-11. https://doi.org/10.1007/s40489-016-0092-y

Schall, C., Wehman, P., Avellone, L., & Taylor, J. P. (2020). Competitive integrated employment for youth and adults with autism: Findings from a scoping review. Child and Adolescent Psychiatric Clinics, 29(2), 373-397.

Schwartzman, J. M., & Corbett, B. A. (2022). Depression and Employment Outcomes in Autistic Adults: A Systematic Review. Review Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s40489-022-00331-9

Scott, M., Milbourn, B., Falkmer, M., Black, M., Bölte, S., Halladay, A., … & Girdler, S. (2019). Factors impacting employment for people with autism spectrum disorder: A scoping review. Autism, 23(4), 869-901.

Seaman, R. L., & Cannella-Malone, H. I. (2016). Vocational skills interventions for adults with autism spectrum disorder: A review of the literature. Journal of Developmental and Physical Disabilities, 28(3), 479-494. https://doi.org/10.1007/s10882-016-9479-z

Smith, D. L., Atmatzidis, K., Capogreco, M., Lloyd-Randolfi, D., & Seman, V. (2017). Evidence-Based Interventions for Increasing Work Participation for Persons With Various Disabilities. OTJR: Occupation, Participation & Health, 37, 3S-13S. https://doi.org/10.1177/1539449216681276

Speyer, R., Chen, Y. W., Kim, J. H., Wilkes-Gillan, S., Nordahl-Hansen, A. J., Wu, H. C., & Cordier, R. (2022). Non-pharmacological Interventions for Adults with Autism: a Systematic Review of Randomised Controlled Trials. Review Journal of Autism and Developmental Disorders, 9(2), 249-279. https://doi.org/10.1007/s40489-021-00250-1

Walsh, E., Holloway, J., McCoy, A., & Lydon, H. (2017). Technology-Aided Interventions for Employment Skills in Adults with Autism Spectrum Disorder: A Systematic Review. Review Journal of Autism and Developmental Disorders, 4(1), 12-25. https://doi.org/10.1007/s40489-016- 0093-x

Weld-Blundell, I., Shields, M., Devine, A., Dickinson, H., Kavanagh, A., & Marck, C. (2021). Vocational Interventions to Improve Employment Participation of People with Psychosocial Disability, Autism and/or Intellectual Disability: A Systematic Review. International Journal of Environmental Research and Public Health, 18(22), Article 12083. https://doi.org/10.3390/ijerph182212083

Westbrook, J. D., Fong, C. J., Nye, C., Williams, A., Wendt, O., & Cortopassi, T. (2015). Transition Services for Youth With Autism: A Systematic Review. Research on Social Work Practice, 25(1), 10-20. https://doi.org/10.1177/1049731514524836

Zhou, K., Ma, S., Gu, Z., Li, S., & Liu, X. (2022). Meta-analysis of vocational skills intervention in adolescents with Autism Spectrum Disorders. Journal of Developmental and Physical Disabilities, 1-27.

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Appendix H: Housing design

Appendix H-1: Content analysis categories

Question 1: What are three problems that autistic people experience in relation to housing?

% of all Problems experienced by autistic people in relation to the housing and sample quote respondents from responses who stated this issue

Access to affordable living accommodations

(e.g., low availability of public/social housing; complex housing pathway; high rental costs; 1 inadequate government assistance for housing)

48%

“Lack of support to get and sustain housing NDIS is not appropriately supporting or funding this.” (ID 105)

Timely access to public housing as currently there is a long wait list

(e.g., shortage of social/public housing; results in living with family or trying to get private rentals in a 2 competitive rental market)

21%

“It takes a long time to get public housing and they are often dependent on family or rental market… [there is] huge shortage in current rentals and public housing, [and] waitlist is huge.” (ID 705)

Ability to cover the costs related to housing (e.g., unemployment or under-employment of autistic people affects ability to afford housing within budget; high costs of living)

“Cost vs income - which may be lower due to not being able to work full time or struggling to find work. Poor work prospects leading to low incomes. Lack of access to employment opportunities reduces income and makes housing unaffordable” (ID 48)

19%

Suitability of accommodation to autistic needs (e.g., interpersonal challenges with shared housing; limited consideration for the best fit housing options for autistic people)

4 “Relationship difficulties in share housing situations, including conflict arising from the person’s 18% particular sensory, privacy & communication needs. Sometimes it is better that they live alone with a pet, being able to access housing with (a) pet, rather than being told they cannot.” (ID 168)

“Lack of suitable options for those who can’t live in group settings or with family - need bespoke options” (ID 790)

Ability to choose from a variety of housing options (e.g., lack of a range in living options)

5 “Lack of understanding and putting those who don’t want to live in a group home no other option 17% but to do so” (ID 409)

“Lack of consideration of what an individual might require and the different types of housing needed for different groups of people on the spectrum” (ID 416)

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