Submission to the Senate Select
Committee on Autism
17 July 2020
About the Submitter
JFA Purple Orange is an independent, social-profit organisation that undertakes systemic policy analysis and advocacy across a range of issues affecting people living with disability and their families.
Our work is characterised by co-design and co-production, and includes hosting a number of user-led initiatives.
Much of our work involves connecting people living with disability to good information and to each other. We also work extensively in multi-stakeholder consultation and collaboration, especially around policy and practice that helps ensure people living with disability are welcomed as valued members of the mainstream community.
Our work is informed by a model called Citizenhood.
JFA Purple Orange
104 Greenhill Road
Unley SA 5061 AUSTRALIA
Website: www.purpleorange.org.au
Facebook: www.facebook.com/jfapurpleorange
Contributors
Skye Kakoschke-Moore, Policy & Research Leader
Mikaila Crotty, Policy & Research Leader
Robbi Williams, CEO
Acknowledgments
JFA Purple Orange would like to thank members of the autism community who contributed to this submission by sharing their experiences with us.
© [July 2020] Julia Farr Association Inc.
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Contents
4.1.1. How agencies can build and uphold the Personal Capital of a client living with
autism 12
4.2.1. How agencies can build and uphold the Knowledge Capital of a client living
-
with autism
4.4.1. How agencies can build and uphold the Social Capital of a client living with
autism 26
- Summary and recommendations Citizenhood describes a situation where a person is an active and valued member of their
local community. The Model of Citizenhood Support is a framework to help a person live a
good life where there are perceived disadvantages through investment in four key areas:
Personal Capital (perspective), Knowledge Capital (information and skills), Material Capital
(tangible physical resources) and Social Capital (connection with other people).
This submission describes each of the four Capitals and uses case studies featuring people
living with autism to demonstrate how the actions of agencies can undermine or promote a
person’s Citizenhood.
By using the Model of Citizenhood Support, case studies and statistics we hope to
demonstrate for the Committee how proper investment in the welfare and life chances of
people living with autism by agencies can help to support them into involvement in
meaningful activities and participation in a network of relationships characterised by
acceptance, belonging and love.
In this submission the term ‘agency’ is used broadly to describe services such as government
departments, schools, workplaces and service providers. We have also drawn on statistics
produced by the National Disability Insurance Scheme (NDIS) and the Australian Bureau of
Statistics (ABS) in relation to the education, employment and social connection of people
living with autism to provide further context to the current life chances of this cohort.
We recommend:
Recommendation 1
All agencies working with people living with autism (and their families) should re-visit their
mission statements and business practices to ensure they uphold the clients’ Personal
Capital and do not undermine the person’s potential, strengths, self-worth, vision, control
and confidence as valued members of mainstream community life.
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Recommendation 2
Agencies should discover ways to get to know their clients on that person’s own terms,
including for example by placing a lesser reliance on formal tools and professional
methodologies and a greater reliance on the art of open-ended questioning and active
listening.
Recommendation 3
All agencies should conduct an audit of the information they provide to clients to ensure it is
accessible by people living with autism and does not make any assumptions of what that
person considers is in their best interests.
Recommendation 4
The Australian Government should establish a plan to increase the employment rate of
people living with autism in mainstream waged employment, with specified timeframes and
designated responsibilities.
Recommendation 5
Workplaces should be encouraged to include information and training for employees about
how to create and maintain inclusive working environments for people living with autism.
Recommendation 6
The NDIA review and evolve the planning mechanism so that Scheme participants living with
autism have authentic control and choice over how their individual budget is used to
maximise their life chances.
Recommendation 7
The Federal Government should provide sustained funding opportunities for peer support
networks run by and for people living with autism.
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Recommendation 8
An autism inclusion campaign, as well as more training in schools and workplaces about
autism and delivered by people living with autism should be rolled out nationally.
Recommendation 9
The Federal Government, through the NDIS and other relevant channels, should strengthen
the availability and quality of support to assist people living with autism to make ordinary
mainstream connections and take up their rightful place as valued members in community
life. This includes strengthening the model of LAC support within the NDIS.
We request the opportunity to appear before the Committee to discuss our submission
further.
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- Introduction JFA Purple Orange is grateful for the opportunity to provide this submission to the Senate
Select Committee on Autism.
Given the prevalence and incidence of autism in Australia this inquiry represents an
important opportunity to inform and refine the government and society’s approach to how
we support people living with autism. Recent statistics from the National Disability
Insurance Scheme show that autism is the primary diagnosis for 31 per cent of Scheme
participants, making it the largest disability cohort represented in the Scheme.1 In 2018
Autism Spectrum Australia revised its estimate of the prevalence of autism from 1 in 100 to
an estimated 1 in 70 people in Australia on the autism spectrum. That is an estimated 40%
increase or around 353,880 people.2 The Murdoch Children’s Research Institute postulates
this increase could be attributed to conceptual change, diagnostic substitution,
methodological differences and social-cultural influences.3 Significantly, these statistics
highlight the prevalence of autism across the Australian community and particularly within
NDIS participants; it is therefore essential for the wider Australian community to better
understand the experiences of people living with autism.
As the Committee will see from other submissions made by individuals, families and
organisations, life for people living with autism can be far from what could be described as
optimal. A variety of factors means it is easy for people living with autism to be
marginalised, underestimated and discriminated against. These factors include a lack of
public education and awareness about autism and inadequate supports available to
facilitate the involvement by people living with autism in everyday activities such as school,
work and recreation.
1 National Disability Insurance Scheme, COAG Disability Reform Council, Quarterly Report, 31 March 2020, p
- 2 Autism Spectrum Australia. 2018. Autism prevalence rate up by an estimated 40% to 1 in 70 people. [ONLINE] Available at: https://www.autismspectrum.org.au/news/autism-prevalence-rate-up-by-an-estimated-40-to-1-in-70-people-11-07-2018. [Accessed 15 July 2020]. 3 The Murdoch Children’s Research Institute. 2011. Do more children have autism now than before?. [ONLINE] Available at: https://www.mcri.edu.au/users/murdoch-childrens-media/blog/do-more-children-have-autism-now. [Accessed 15 July 2020]. 7
In order to address these issues, to guard against them re-occurring and to prevent new
barriers appearing in the future, JFA Purple Orange believes there needs to be proper
investment in a person’s welfare and life chances. One way to achieve this is by designing
and implementing a plan anchored on concepts such as those laid out in the Model of
Citizenhood Support.4 Broadly speaking, this Model is based on the premise that each of us
wants to live a good life, and this can be achieved through investment in four key areas of
Capital: Personal Capital, Knowledge Capital, Material Capital and Social Capital.
The purpose of this submission is to explain the key concepts contained in the Model of
Citizenhood Support and how they relate to the lives of people living with autism. We use
case studies and make recommendations for agencies that will assist them to help their
clients achieve Citizenhood. In this way we aim to address the following elements of the
inquiry’s terms of reference:
g) the social and economic cost of failing to provide adequate and appropriate services, including to support key life stage transitions of autistic people; and
k) the social inclusion and participation of autistic people within the economy and community.
In this submission the term ‘agency’ is used broadly to describe services such as government
departments, schools, workplaces and service providers. However, as one member of the
autism community told JFA Purple Orange, agencies are made up of people, and it is the
people who are responsible for their actions and hence the actions of the agency. This
should be borne in mind by readers, in particular those who may be part of agencies
working with the autism community - it is not possible for an agency to change for the
better unless the people working there do as well.
When preparing this submission JFA Purple Orange spoke with members of the autism
community in South Australia. The experiences they shared with us have been featured in
Case Studies where pseudonyms have been used to protect their privacy.
4 Williams, R. (2013), Model of Citizenhood Support: 2nd edition, Julia Farr Association Inc, Unley South Australia. 8
- Citizenhood Citizenhood describes a situation where a person is an active and valued member of their
local community. Their lifestyle is informed by personally defined choices and they are able
to grow through their involvement in meaningful activities and by their participation in a
network of relationships characterised by acceptance, belonging and love. Citizenhood
comprises roles that are valued by our communities; family member, friend, neighbour,
worker, club member, customer, etc. A summary of the Citizenhood concept, and the
associated imperative for people living with disability, is outlined in this short animated
media clip.
Citizenhood is dynamic in that it can rise or fall depending on a person’s specific
circumstances. For example, a person living with autism who is excluded from the
educational and social benefits of mainstream schooling is at risk of having their Citizenhood
diminished because of insufficient access to valued roles in mainstream community life, in
this case the valued role of being a mainstream student.
The concept of Citizenhood is not to be confused with the concept of Citizenship, which is a
much narrower construct typically referring to membership of a country.
3.1. Model of Citizenhood Support
The Model of Citizenhood Support is a framework for determining what kind of assistance
might be most helpful to a person in circumstances where there are perceived
disadvantages such as physical or mental impairment or a lifestyle characterised by a
relative poverty of resources and opportunities. By examining how a person can call upon
their four key areas of Capital (Personal Capital, Knowledge Capital, Material Capital and
Social Capital), it is possible to determine how a person’s life chances will enable them to
live a good life through exercising life choices. This submission will explain each of the four
Capitals and use de-identified case studies from people living with autism to demonstrate
how the Capitals can be affected by agencies.
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- The Four Capitals The Model of Citizenhood Support asserts the relative success or failure of systems of
personal support in advancing people’s life chances can be linked to the degree of attention
given to four main elements, called Capitals:
- Personal Capital (perspective)
- Knowledge Capital (information and skills)
- Material Capital (tangible physical resource)
- Social Capital (connection with other people)
4.1. Personal Capital
For a person to advance their chances of living a good life it is important for them to have a
sense of who they are, their worth and the vision or dream they are moving towards. There
are six important elements of Personal Capital a person may draw upon to advance or
uphold a good life: potential, strengths, self-worth, vision, control and confidence.
People may vary in the degree to which they see the inherent worth in themselves, their
capacity to take up a life of active Citizenhood, and what that might look like. The degree to
which we give ourselves permission to do these things may depend on the life experiences
we have had. These life experiences will often involve how other members of society
perceive us and interact with us. Some people living with autism have told JFA Purple
Orange they feel as though their diagnosis puts them “in a box” and they are stereotyped.
One interviewee told us:
While autism awareness is growing, I’m not sure acceptance is growing at the same
rate. A lot (of us) have internalised ableism from messages we’ve received which
makes it harder for us to disclose we are autistic because we will be stereotyped.
There’s still a lot of minimising and discounting (of autistic people) and you feel as
though you’re not free to be yourself.
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As the quote above demonstrates, for people living with autism (and their families), their
life experiences may mean they have not had the opportunity to believe in their own
inherent potential or strengths and have a diminished view of their self-worth. They may
not have had the opportunity to imagine a good life for themselves, feel they lack the
control they need to make positive chance or may lack the confidence to do so.
Case Study 1 – Personal Capital – “Would they have noticed if I hadn’t told them?”
When Jenny* was on a placement as part of her university degree she told her new
colleagues she was autistic. After this discussion one colleague would routinely ask Jenny
why she didn’t socialise with her work mates more and told Jenny she had to spend more
time with others. Jenny told JFA Purple Orange:
“Even when I explained I used my breaks as quiet time to work and that my performance
would suffer without this time to prepare, I was still told I should socialise more. This made
me regret telling my colleagues about my diagnosis and I wondered, would they have
noticed if I hadn’t told them? Once I had the autism label, it was like some of my colleagues
were looking for ways I was different.”
In this example Jenny noticed that others interacted with her differently after she told them
she was autistic. This had the potential to diminish Jenny’s Personal Capital as she was made
to feel different and her behaviours were more closely scrutinised than others’ in the same
workplace.
Increased vulnerability resulting from low Personal Capital can lead a person to come into
contact with informal and formal supports such as welfare (Centrelink) and the National
Disability Insurance Scheme.
Unfortunately, for some people the experience of accessing welfare has resulted in a
diminished capacity to see their inherent worth, their strengths, and the possibility of a
valued and fulfilling role in the world. This happens because the person is a passive recipient
of welfare services: passive in the sense they are not an active partner in the decisions
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about how those services happen and recipient in the sense that the person’s role is to be
the receiver of other people’s efforts rather than the giver of their own. This is not to
suggest that the financial assistance provided by Centrelink is always unhelpful. On the
contrary, thought should be given to how these payments could be used to grow a person’s
capacity rather than perpetuating the current disconnect between welfare and personal
growth.
4.1.1. How agencies can build and uphold the Personal Capital of a client living with autism
Opportunity exists for agencies (including government departments and service providers)
to help an individual build their Personal Capital. This can be achieved by the agency
recognising it has a fundamental obligation to uphold a person’s Personal Capital. This
means the agency must carry out its endeavours in ways that do not inadvertently (or
intentionally) undermine a person’s view of their own potential, their strengths, their
personal vision of what might be possible in their life, and their personal leadership as a
decider and actor.
Case Study 2 – Personal Capital – Tertiary education setting
Sarah* was an autistic student5 in tertiary education in South Australia. She was told by the
institution’s Disability Adviser she should change her enrolment to part-time because of her
autism. After speaking with others, Sarah learned this Disability Adviser would routinely give
this advice to other autistic students, regardless of their personal circumstances or
preferences.
During her studies Sarah was involved in a group project and on the day of their
presentation one of the other group members arrived unprepared and Sarah’s group had to
present without them. At the end of the presentation the lecturer, who was aware Sarah
was autistic, told Sarah in front of the class that she should be really proud to have
5 In this submission JFA Purple Orange uses the language “person living with autism”. However, we have honoured the individual language used by interviewees in the quotes and case studies. This is why phrases like “autistic student” and “autistic person” have been used in these contexts. 12
continued on with the presentation and that she should go home and tell her mum about it.
None of the other group members were addressed in this way, making Sarah feel
uncomfortable and questioning why she was singled out by the lecturer.
In Sarah’s case it appears the Disability Adviser and lecturer had lower expectations about
Sarah’s abilities than she did, which had the potential to undermine Sarah’s Personal
Capital. Rather than making assumptions about Sarah’s ability and potential, the Disability
Adviser and the lecturer should have focused on what they could do to help Sarah grow her
potential, strengths and view of herself.
Case Study 3 – Personal Capital – Ignored by a service provider
Susan* visited a telecommunications provider with her husband in a busy suburban
shopping centre in order to change her internet plan. She explained to the sales assistant
that she was starting her own small business and the account she needed upgraded was in
her name. Susan then said she was autistic and asked if they could talk somewhere away
from the noise and bright lights. As soon as Susan revealed her autism the sales assistant
stopped addressing her and only addressed her husband, despite the fact that plan was for
Susan and was in her name. Following their visit Susan’s husband was sent the survey asking
him to rate his experience in the store that day.
In this situation the service provider did not uphold Susan’s Personal Capital and actively
undermined her by assuming her husband was the more appropriate person to
communicate with about Susan’s internet plan.
Recommendation 1: All agencies working with people living with autism (and their
families) should re-visit their mission statements and business practices to ensure they
uphold the clients’ Personal Capital and do not undermine the person’s potential,
strengths, self-worth, vision, control and confidence as valued members of mainstream
community life.
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Agencies can also consider how they get to know their clients, including their clients’ life
experiences and the effect of this on their Personal Capital. When assessment tools and
other methodologies are driven by an agency’s own time and resource constraints, the
agency will not get to know their client well.
For example, specific questions generate specific answers and often only derive sufficient
information for the agency to calculate a measure of fit within the agency’s own offerings.
Even though such approaches might be described as individualised planning, or even
person-centred planning, they are in fact service-centred planning because the attempts to
understand the person are framed in the context of the agency’s worldview, not the
person’s world view.
The risk of service-centred planning exists for any agency that already has ideas in mind (or
arrangements in place) for assisting people in similar situations. It is important that an
agency does not wholly rely on the assumption that arrangements that proved helpful to
one person will prove to be just as helpful for another person with similar issues. For
example, a member of the autism community told JFA Purple Orange that some NDIS
Planners are making assumptions that people living with autism all require the same types
of supports and are including these supports in plans. These assumptions are taking away
from the individualised planning approach intended by the NDIS.
Recommendation 2: Agencies should discover ways to get to know their clients on that
person’s own terms, including for example by placing a lesser reliance on formal tools and
professional methodologies and a greater reliance on the art of open-ended questioning
and active listening.
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4.2. Knowledge Capital
Each individual has a personal store of information and skill which we use to make decisions
and take actions. This information also helps us to understand and describe our potential,
grow our capacity and exercise personal agency. In the Model of Citizenhood Support, this
store of information and skill is known as Knowledge Capital.
Knowledge Capital has two important considerations: how we make the best use of what
we know and can do, and how we acquire new knowledge and skill. For people living with
increased vulnerability, which can include people living with autism, issues with access to
information, and filters applied to information before it is received by the person, can
impede that person’s Knowledge Capital.
It is important to understand what filters have been applied to information before it is
provided to a person so that one might assess the relative value of that information. In the
context of people living with autism, filters can take a variety of forms including family
members, friends, teachers, government agency staff and employers. Where assumptions
are made about the capacity of a person living with autism to understand information (or
their potential level interest in the information being provided), this can act as a filter which
has an impact the six elements necessary for a person to uphold a good life: potential,
strengths, self-worth, vision, control and confidence. It is therefore necessary for agencies
as well as family members to understand how they might be underrepresenting or
misrepresenting information in their exchanges with people living with autism.
Case Study 4 – Knowledge Capital – The doctor’s phone call
Samantha* was in her early twenties and living with her parents when her doctor called the
house. Rather than discussing Samantha’s medical issues with her directly, he instead spoke
to Samantha’s mother, a clear breach of Samantha’s privacy as an adult. Samantha believes
this would not have occurred if she was not autistic.
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In this situation the doctor undermined Samantha’s Knowledge Capital by requiring her
private information to be communicated to Samantha through the filter of her mother.
4.2.1. How agencies can build and uphold the Knowledge Capital of a client living with autism
In the Model of Citizenhood Support, when seeking to help a person, an agency (or
individual agent) has a fundamental obligation to uphold a person’s Knowledge Capital and
to build on it. This means the agency must carry out its endeavours in ways which do not
inadvertently undermine the person’s access, understanding and use of their Knowledge
Capital.
In order to ensure an agency is not inadvertently undermining a person’s access,
understanding and use of their Knowledge Capital , they may need to engage in deeply
thoughtful and highly intentional steps to assist the person to access information that may
eventually prove meaningful, especially in the context of advancing the person’s life
chances. In order to achieve this, an agency should consider how it makes information
available by conducting information audits on a regular basis. This audit should identify
where an agency is prioritising their own interests over the interests of the people it claims
to serve and should consider what role the agency plays in facilitating access to information
possessed by others.
Recommendation 3: All agencies should conduct an audit of the information they provide
to clients to ensure it is accessible to people living with autism and does not make any
assumptions what that person considers is in their best interests.
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4.3. Material Capital
The Model of Citizenhood Support asserts two main types of Material Capital: Personal
Material Capital and Public Material Capital, and both need to be addressed to advance a
person’s life changes towards a good life.
Personal Material Capital is the tangible assets owned or controlled by a person themselves,
such as money, housing and personal effects. Public Material Capital are tangible assets
within our communities, both publicly and privately owned, which are available for the
broader population to use. Examples of Public Material Capital include public
transportation, shopping malls, telecommunication networks and outdoor spaces like the
beach. These assets are instrumental in a life of active Citizenhood as they are typically the
platform for a person to connect with others.
4.3.1. Personal Material Capital
Where a person experiences low Personal Material Capital, otherwise known as poverty,
this typically translates to poor or no housing, difficulties with costs of food and utilities, and
less involvement in community life because of the difficulties meeting the costs of public
transportation, entertainment and so on. The experience of poverty dramatically reduces
the range of choices available to a person, because many choices in life are dependent on
people having money. Fewer choices mean fewer opportunities, and few opportunities
means less Citizenhood.
Low Personal Material Capital makes it harder for a person to access Public Material Capital;
it’s much harder to get to the beach, the shopping mall or the concert if you can’t afford the
bus fare to get there. People can experience difficulties accessing Public Material Capital
separate from financial means, particularly where these assets are not accessible. For
example, a person living with autism or their family member may find noisy, bright and busy
supermarkets inaccessible due to the sensory challenges they pose. If in its design the bulk
of Public Material Capital is inaccessible to sections of the community, many of those people
will be less able to engage in community life on the same basis as others, and this cuts
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people off from an almost incalculable range of possibilities – for growth, for work, for love,
for belonging.
People need to be able to access Material Capital in support of active Citizenhood. This
includes maintaining current Material Capital and also growing Material Capital. If a person
needs assistance because of increased vulnerability, the formal agency (or individual agent)
has a fundamental obligation to uphold that person’s Material Capital. This means the
agency must carry out its endeavours in ways which help maintain, and do not inadvertently
undermine, the person’s ownership or control of personal material resources, or the
person’s access to publicly availably amenities.
In order to achieve this, the agency must provide assistance in a way that demonstrates
they respect and show care for that person’s belongings. They must also take care to avoid
practices which diminish a person’s access to mainstream Public Material Capital and
instead should assist a person to take advantage of this capital. A powerful example of this
is the creation of ‘special’ services for people living with disability, such as segregated
schools and workplaces. While often well-intentioned, the creation of ‘special’ settings for
people living with disability mean this part of our population are less visible to the broader
community which could lead to some people believing that public amenities and other
mainstream community resources are not suitable for people living with disability.
4.3.2. Meaningful paid work
In order for a person to advance their Personal Material Capital, two elements are required:
finding meaningful paid work and creating personalised budgets. Earning a living wage is the
primary way most people maintain and grow their Material Capital; therefore meaningful
paid employment is a powerful way to advance a person into a life of active Citizenhood. As
one person living with autism told Purple Orange:
“being able to maintain paid employment has increased my wellbeing massively. It’s
helped me be more resilient when I’m dealing with people discounting and
minimising me (because of my autism) and when systems are being inflexible”.
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According to the Australian Bureau of Statistics, the labour force participation rate for
working age people living with autism in 2018 was 38 per cent, compared to 53.4 per cent of
all working age people living with disability and 84.1 per cent of people without disability.
The unemployment rate of people living with autism was 34.1 percent, which was more
than three times the rate for people living with disability and eight times the rate for people
without disability.6 In 2018, 65 percent of NDIS participants aged 25 and over living with
autism were employed in an Australian Disability Enterprise, with a further 13 percent in
open employment at less than award wages. Only 16 percent of NDIS participants aged 25
and over living with autism were in open employment with full award wages, compared to
33 per cent for all disability types.7
JFA Purple Orange spoke with people living with autism about their employment
experiences which are described in Case Study 5 below.
Case Study 5 – Material Capital – Employment experiences
When asked about her experience revealing her autism diagnosis to colleagues, Tina* told
JFA Purple Orange:
I thought disclosing at work would free me up because I wouldn’t have to camouflage
anymore, but it’s put me more in the spotlight. I get questioned a lot. If I talk about feeling
anxious, that gets focussed on by others. Colleagues advocate for me when I don’t need it or
want it. For example, they will contact my manager saying, “we think Tina is stressed”, when
really they are the ones who are stressed about a situation. Revealing my autism has limited
me in workplaces. I have not been given opportunities for higher roles. People treat you as
though you are less capable or skilled. They won’t invite you to social gatherings and it
changes the way you are spoken to. I once told an interviewer about my diagnosis and you
could feel the level of respect drop in the room.
6 Australian Bureau of Statistics. 2019. Autism in Australia. [ONLINE] Available at: https://www.abs.gov.au/AUSSTATS/abs@.nsf/Lookup/4430.0Main+Features102018. [Accessed 9 July 2020]. 7 National Disability Insurance Scheme, Outcomes for participants with Autism Spectrum Disorder, 30 June 2018, p 75. 19
Bianca* explained her frustrations about the lack of education and awareness of autism in
workplaces:
You feel like you have to establish yourself and prove yourself before anyone knows you have
a disability so you’re not automatically stereotyped. People don’t know how to cope if I am
having an escalation. They don’t know how to support me but they don’t have discussions
about how to support me either. Workplaces don’t have Access and Inclusion Plans or
mentors and there are few peer networks for autistics in paid employment. There’s not much
education for workplaces around autism. This has impacted my career aspirations.
Julia* revealed how the working from home arrangements imposed as a result of COVID-19
were beneficial for her:
Working from home has been great. I don’t have to worry about what I look like to other
people. I don’t have to go through driving an hour to and from work and all the
concentration that requires. It’s meant I’m free to be creative and sit in solitude which I need
to concentrate for long periods of time. I’ve been able to escape into hyper-concentration
phases without being interrupted – I’ve at least doubled my productivity since working from
home. COVID-19 has given me opportunities to participate in more things because they are
being held online. I’m worried about ‘returning back to normal’ because this new normal has
been better for me. I’m nervous workplaces will reduce these online opportunities for
external engagement.
The experiences described in Case Study 5 together with employment statistics
demonstrate the challenges many people living with autism face when trying to find and
maintain a job, particularly in open employment at full wages. Given the importance of a
living wage to a person’s life chances, the challenge for agencies is how to maintain a strong
focus on assisting people into authentic employment paying a living wage, and to firmly
resist the temptation to conclude such a goal might not be possible for people with certain
types of vulnerabilities, including autism.
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Recommendation 4: The Australian Government should establish a plan to increase the
employment rate of people living with autism in mainstream waged employment, with
specified timeframes and designated responsibilities.
Recommendation 5: Workplaces should be encouraged to include information and
training about how to create and maintain inclusive working environments for people
living with autism.
4.3.3. Personalised budgets
The availability of a personalised budget advances a person’s Material Capital because the
person has control over additional material resources, which can result in improvements to
the person’s circumstances.
Creating personalised budgets means a person has choice and control over how to spend
funding provided to them. An example of this in Australia is the National Disability Insurance
Scheme. According to the most recent Quarterly Report (2019-2020 Q3) released by the
NDIS, 31 per cent of Scheme participants had autism as their primary diagnosis, the largest
disability cohort represented in the Scheme.8 However, participants living with autism were
less likely to choose who supports them and what they do each day than participants with
other disability types. Only 34 percent of participants aged 25 and over reported they
choose who supports them, and 47 per cent choose what they do each day (compared to 55
per cent and 64 percent respectively for other disability types).9 These statistics suggest that
the increase in Personal Material Capital provided by the NDIS is not necessarily translating
into improvements in the person’s circumstances where they are a Scheme participant living
with autism.
8 National Disability Insurance Scheme, COAG Disability Reform Council, Quarterly Report, 31 March 2020, p
- 9 National Disability Insurance Scheme, Outcomes for participants with Autism Spectrum Disorder, 30 June 2018, p 71. 21
Chart 1 - NDIS participants and choice
70
60
50 40 30 20 10
)
Choose who supports them Choose what they do each day
B@ Autism 25 years + @ Other disabilities 25 years +
Recommendation 6: The NDIA review and evolve the planning mechanism so that Scheme participants living with autism have authentic control and choice over how their individual
budget is used to maximise their life chances
4.4. Social Capital
The nature and extent of our connectivity to other people represents Social Capital, and is an asset that can be used to advance a person’s life chances. The Model of Citizenhood
Support proposes two main aspects of Social Capital: Connection and Fellowship.
Connection refers to the transactions that happen between people. Fellowship on the other hand refers to the depth of those transactions. Fellowship can range in depth from the pleasant familiarity of chatting to the same checkout operator during our weekly shop, or a regular cuppa with the neighbours, acquaintanceships, friendships, and close relationships. But none of these fellowships can grow or be sustained without the initial and subsequent connections shared by the people involved. Social Capital can be considered to be low if the person has few connections and relationships. The consequence of low Social Capital is
isolation and loneliness. 22
Unfortunately for many people living with increased vulnerability, daily life is characterised
by the receipt of services and not much else; as though the goal of service delivery seems to
be to get people clean, dressed, fed, moved and “therapied” with the rest of the time being
“filler”. In this way, people are at risk of being trained to see their life goals in terms of
service recipiency rather than growing social networks.
According to the 2019 NDIS report ‘Outcomes for participants with autism spectrum
disorder’, 34 per cent of Scheme participants living with autism aged 15 years to 24 years
old reported having no friends other than family or paid staff, and 41 per cent of
participants aged 25 and over reported having no friends other than family or paid staff.10
This compares to 25 per cent of other disabilities in those age ranges reporting they have no
friends other than family or paid staff. Only 36 percent of over 25 year old’s living with
autism reported being involved in a community, cultural or religious group in the last 12
months, which while low, is on par with other disability types.11 The prevalence of social
isolation in the autistic community was affirmed in a 2018 survey conducted on behalf of
Amaze which found that 52 per cent of autistic people reported feeling socially isolated.12
These statistics suggest that people living with autism are more likely to have Connection
than Fellowship with other people in their lives and that as the person living with autism
enters adulthood they are less likely to have friends outside of family and paid staff.
10 National Disability Insurance Scheme, COAG Disability Reform Council, Quarterly Report, 31 March 2020, pp
67 and 71 11 National Disability Insurance Scheme, Outcomes for participants with Autism Spectrum Disorder, 30 June 2018, p 71
12 Amaze, Talking About Autism, Guidelines for Respectful and Accurate Reporting on Autism and Autistic
People, p 10. 23
Chart 2 - Percentage of NDIS participants living with autism who report having no friends other than family or paid staff
45
40
35
30
25
20
15
10
5
0
15-24 year olds 25 years + Other disability (15 years +)
No friends other than family or paid staff
Case Study 6 – Social Capital – “Autistic people can get lonely”
While discussing the concept of Social Capital with Tina*, she told JFA Purple Orange:
It’s vitally important for people to know the idea that autistic people don’t want friends is so
wrong. Some of us love seeing people and are very social. Others say they feel as though
they use up all their energy at work and they just want to relax. But because people make
assumptions that we don’t want to socialise, autistic people can get lonely.
When the NDIS statistics pertaining to social connection were discussed with a person living
with autism, they looked at the information from a different perspective. They advised that
for some people living with autism, lots of social connection with others may not be
something this is actively sought or wanted. It is important then noting that while the NDIS
statistics provide an indication of the level of social connectedness, they do not necessarily
reflect whether the Scheme participants with autism who were surveyed want to be more
socially connected. Consideration must therefore be given to how we can better support
people living with autism who want to be more socially connected achieve this. Where a
person’s circumstances are significantly challenging enough to be disabling, we must
contemplate how we can support them to make new connections in mainstream
community life.
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The Model of Citizenhood Support asserts that where a person lives with increased
vulnerability it may be more difficult for them to move into opportunities that build
connection, which has an impact on their Social Capital. A typical system response to this
has been to set up special opportunities or services for the person, albeit with hopefully
good intentions. However, these special opportunities typically involve grouping people
living with disability, or where one-on-one support is dominated by the worker being the
main conversation holder with community members. The result of these sincere but
misjudged efforts is that the person’s Social capital is not grown, and is often actually
diminished. By their nature, special services present narrower opportunities to access and
build ordinary social connections. This inhibits the advancement of the person’s Social
Capital, giving rise to the need for more special services. This becomes a vicious circle,
where a person with lower capacity to build social connections is referred to special
services, whose efforts only serve to make the issue entrenched, which in turn results in
more special services.
While school students living with autism enjoy a higher rate of participation in mainstream
schools (60 per cent compared to 53 per cent of other disability types), this inclusion does
not carry over into weekends or after school, with only 34 per cent of children with autism
spending time with friends or participating in mainstream programs during those times.13
Even more concerning is that children living with autism feel less welcomed and actively
included in those activities compared to children with other disability types.14 This
separation from mainstream activities at a young age risks entrenching segregation as the
child grows older, inhibiting the advancement of their Social Capital and potentially giving
rise to the need for more special services, thus perpetuating the vicious circle described
above.
13 National Disability Insurance Scheme, Outcomes for participants with Autism Spectrum Disorder, 30 June 2018, p 61. 14 71 percent of children living with autism reported feeling welcomed or actively included compared to 82 percent of children with other disability types. National Disability Insurance Scheme, Outcomes for participants with Autism Spectrum Disorder, 30 June 2018, p 61. 25
4.4.1. How agencies can build and uphold the Social Capital of a client living with autism
If a person needs assistance because of increased vulnerability, the formal agency (or
individual agent) has a fundamental obligation to uphold and advance that person’s Social
Capital. This means the agency must carry out its endeavours in ways which help maintain,
and do not inadvertently undermine, the person’s social connections. The agency should
also be mindful of the role it can play in supporting a person to advance their Social Capital
by organising its supports in ways which continuously present opportunities for the person
to make new connections in mainstream community life, and to maintain and deepen
connections so that true mutual fellowship emerges.
Case study 7 – Social Capital – Women’s social group
Beth* was in her 20s when she was strongly encouraged by a disability service provider to
join a social group for autistic women. The members of the group had no say in the activities
that were organised for them. On one occasion they went to an arts and crafts event where
they were told to make pom poms, an activity the women felt was not age appropriate for
them. This group did not provide opportunities for the women to build connections with the
wider community and the members were not empowered to take ownership of the group
and determine what activities were to be arranged. In this situation the organisers of the
social group were not advancing the Social Capital of the group’s members.
One of the frustrations people living with autism told JFA Purple Orange about was the need
to take up the role of educator due to the lack of community awareness and understanding
about autism. We were told how it can be “frustrating and tiring” explaining your diagnosis
to another person and there is a tension between wanting to act on ‘teachable moments’
and a reluctance to do so due to the frequency with which these moments present
themselves. However, when a person living with autism connects with another autistic
person, the pressure to play the role of educator is removed. As a result, members of the
autism community also told JFA Purple Orange about the importance of making connections
with other people living with autism.
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Case Study 8 – Social Capital – Building connections with the autism community
Julia* described for Purple Orange why building connections with other autistic people was
important for her:
It took a long time for me to work out what friendship is, what work friends are, what
romantic intentions look like. The beginning of the journey was meeting my husband and
him being so relaxed and open about who I was. Then having the (autism) diagnosis and
deliberately seeking out my community and discovering there was a whole world of people
like me, people with similar life experiences who enjoyed shorter periods of contact and
online friendships. I have friends now, people I can call if I need to talk about things. People
who I can have conversations with and not have to worry about making eye contact. Autistic
people assume we are all competent in every area to start with.
As demonstrated by Case Study 8, peer support for people living with autism is an important
way to find fellowship and mutual support. Relationships with other people living with
autism were described as “safe” by interviewees, and provided opportunities for them to be
themselves. Greater investment should be made by the Federal Government in establishing
and maintaining peer support networks run by and for people living with autism, for
example through Individual Capacity Building grants.
Recommendation 7: The Federal Government should provide sustained funding
opportunities for peer support networks run by and for people living with autism.
The peer support provided through connecting with other people living with autism is
important, however, this should not lead to an assumption by society that these
connections are the only relationships people living with autism need or want. Furthermore,
peer support does not replace the importance of our mainstream communities becoming
more welcoming and inclusive of people living with autism as part of a diverse community.
The lack of community awareness and understanding about autism may be acting as a
barrier for people living with autism developing connection and fellowship with the broader
community, and thus advancing their Social Capital. More capacity-building in schools,
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workplaces and other agencies would assist in bridging that knowledge gap and remove the
need for people living with autism feeling as though they need to adopt the role of educator
when they are confronted with ignorance or naiveite. This training should be delivered by
people living with autism. A national campaign to increase autism inclusion (not just basic
awareness) would help to ensure a broad reach of information about autism into the
community and make it easier for people living with autism to access opportunities for
connection and fellowship to the extent they want.
Recommendation 8: An autism inclusion campaign, as well as more training in schools and
workplaces about autism delivered by people living with autism should be rolled out
nationally.
Recommendation 9: The Federal Government, through the NDIS and other relevant
channels, should strengthen the availability and quality of support to assist people living
with autism to make ordinary mainstream connections and take up their rightful place as
valued members in community life. This includes strengthening the model of LAC support
within the NDIS.
- Conclusion The Model of Citizenhood Support provides a framework for assisting people experiencing
vulnerability to advance into a life characterised by engaging in meaningful activities and
genuine, respectful relationships. JFA Purple Orange hopes that by providing case studies
demonstrating how an individual’s Personal, Knowledge, Material and Social Capital can be
affected by agencies we have provided the Committee with insights into how agencies can
assist people living with autism achieve a good life.
We request the opportunity to appear at a public hearing for this inquiry in order to discuss
our submission further.
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- References
Amaze, Talking About Autism, Guidelines for Respectful and Accurate Reporting on Autism
and Autistic People
Australian Bureau of Statistics. 2019. Autism in Australia. [ONLINE] Available at: https://www.abs.gov.au/AUSSTATS/abs@.nsf/Lookup/4430.0Main+Features102018 [Accessed 9 July 2020]
Autism Spectrum Australia. 2018. Autism prevalence rate up by an estimated 40% to 1 in 70 people. [ONLINE] Available at: https://www.autismspectrum.org.au/news/autism-prevalence-rate-up-by-an-estimated-40-to-1-in-70-people-11-07-2018. [Accessed 15 July 2020]
National Disability Insurance Scheme, COAG Disability Reform Council, Quarterly Report, 31
March 2020
National Disability Insurance Scheme, Outcomes for participants with Autism Spectrum
Disorder, 30 June 2018
The Murdoch Children’s Research Institute. 2011. Do more children have autism now than before?. [ONLINE] Available at: https://www.mcri.edu.au/users/murdoch-childrens-media/blog/do-more-children-have-autism-now. [Accessed 15 July 2020].
Williams, R. (2013), Model of Citizenhood Support: 2nd edition, Julia Farr Association Inc,
Unley South Australia
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