The Autistic Realm Australia (TARA) submission to the inquiry of the Senate Select Committee on Autism

July 2020

Emily De Rango, Anna Colbasso, Kylieanne Derwent, Kathy Isaacs, Yolande McNicoll, Stephanie Hook, Narelle McCaffrey

www.tara.org.au TARA submission to the Senate Select Committee on Autism

Executive Summary

The Autistic Realm Australia Inc. (TARA) welcomes the opportunity to provide a submission to the Senate Select Committee on Autism’s inquiry, and would welcome the opportunity to further contribute to the inquiry by giving evidence at a public hearing.

TARA is an Autistic-led not for profit association providing support, education and advocacy for Autistic people and the parents and carers of Autistic people in Australia. We are working toward a world where all Autistic people are free to be themselves, and are respected, accepted and empowered to lead meaningful lives of their choosing.

Currently in Australia, many Autistic people struggle with discrimination, social isolation, poor mental health and financial precarity. This is because we live in a society where both the general public and health professionals often have limited and inaccurate understandings of Autism, and we are unable to access the support we need to thrive. These challenges are especially great for Autistic girls and women, gender-diverse Autistic people, people who are diagnosed as Autistic as adults, Autistic people from culturally and linguistically diverse backgrounds and Autistic people with complex health needs.

Yet despite our challenges and the barriers we face, Autistic Australians have extraordinary strengths and capabilities. To harness these capabilities and create a society where more Autistic people can lead meaningful and satisfying lives, Australian governments, service providers and communities need to recognise the expertise and lived experience of Autistic people. By centring the voices and perspectives of Autistic people, Australia can create policies, programs and services that are appropriate, accessible, inclusive, and celebrate the diversity of the Autistic community. We can create public awareness campaigns that promote understanding of Autism and the Autistic community, and work toward a society that accepts and values all of its members.

This submission is founded on the contributions of Autistic Australians and parents of Autistic children, who provided in-depth insights and opinions on the inquiry’s terms of reference via an online survey published by TARA in February and March 2020. It is also informed by TARA’s five years of interaction with the Autistic adults and parents of Autistic children who are members of our support communities.

1 www.tara.org.au TARA submission to the Senate Select Committee on Autism

Recommendations All recommendations are premised on a fundamental cultural shift in approaching Autism that values and centres the voices, experiences and expertise of Autistic people, and recognises Autism as a natural and valid form of neurodiversity.

1. Increase acceptance and support for Autism and Autistic people in the community This should include investment in public awareness campaigns to improve the Australian public’s understanding and acceptance of Autism and Autistic people, with a particular focus on developing culturally relevant and accessible information with and for First Nations people and people from culturally and linguistically diverse backgrounds.

2. Develop national media policies on the portrayal of Autistic people Australian governments, Autistic-led organisations and media companies need to work together to develop guidelines that ensure Autistic people are portrayed in respectful ways that recognise their agency, and that portrayals do not fall into sensationalised or stereotypical tropes about Autism. There is a particular need to ensure the informed consent of any Autistic people portrayed in the media, particularly when that person is vulnerable and/or a child.

3. Increase public funding and support for Autistic-led organisations Advocacy related to Autism must be led by Autistic people, with governments supporting and working in partnership with Autistic-led groups to build their capacity for support, education and advocacy and achieve positive outcomes for the Autistic community. To coordinate self- advocacy efforts, public funding and support should be directed toward creating a peak body of Autistic-led organisations that is able to operate as a high-level advisory council for governments and other organisations.

Autistic people from diverse backgrounds must be afforded influential positions in all bodies that develop policy and practice guidelines relevant to Autism and Autistic people. All organisations that include Autism services or policy as part of their mission statement must engage in ongoing consultation with an Autistic-led organisation.

To support increased social engagement and peer connection, funding should also be directed toward Autistic-led sporting and community programs for Autistic children and adults.

4. Improve the training of healthcare providers, service professionals, decision-makers and educators regarding Autism, related conditions, and the needs of Autistic people Improved training must be created and provided to any practitioner who has any level of involvement with Autistic people; including but not limited to psychologists, psychiatrists, occupational therapists, counsellors, hospital staff, general practitioners and nurses.

Practitioners in rural and remote areas must have equitable access to this training, which should be co-designed and delivered by Autistic people and incorporate recognition and celebration of the wide diversity within the Autistic community.

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5. Increase access to high-quality affordable diagnostic and support services National diagnostic procedures must be developed in collaboration with Autistic people that are inclusive of differences in gender, sexuality, cultural and linguistic background, socio- economic status and geographic location. Effective and individualised support must be available to Autistic people across their life course, with a particular focus on improving support available for Autistic Australians living in rural and remote areas.

All diagnostic and support services must be trauma-informed and recognise the diversity and variety of presentations among the Autistic community. In light of COVID-19, policies and processes must also be developed to support vulnerable Autistic people during epidemics and similar crises, and mitigate the potential health and economic impacts.

6. Develop inclusive education policy and practices to support Autistic children A national education training package, co-designed and delivered by Autistic people, should be developed for all education settings to ensure a nationwide consistent standard for Autism education.

The package must focus on inclusion and acceptance of Autistic children within education settings, and set a standard for reasonable adjustments provided for Autistic children. Additionally, the training package should support educators to empower Autistic children to be self advocates rather than focusing on compliance and behaviour modification.

7. Improve NDIS support for Autistic people NDIS staff must be trained to understand and positively engage with Autistic people, and provide greater support and empowerment for Autistic people to plan and choose the services they need. NDIS funding for Autistic people must be consistent across the service and appropriate to our support needs.

8. Reject interventions that harm Autistic people Applied Behavioural Analysis (ABA) and other interventions that are predicated on suppressing Autistic behaviour must not be supported in government-funded programs. Governments must play a strong role through legislation and community awareness to outlaw and advocate against actively damaging alternative interventions.

9. Refocus research on therapies and interventions that would support improved life outcomes for Autistic people, rather than causes and cures All research pertaining to Autism or Autistic people should include Autistic people in its design and delivery. Research should have a trauma-informed and life course approach, that recognises the diversity and complexity of Autistic people’s lived experience.

10. Develop a National Autism Strategy founded on an Autism-positive framework The development, implementation and monitoring of a National Autism Strategy must include Autistic people in key roles. It must recognise and respond to the diversity within the Autistic community, and be premised on a holistic policy approach that works within the social model of disability.

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The Autistic Realm Australia Inc (TARA) The Autistic Realm Australia Inc (TARA) is a not for profit incorporated association providing support, education and advocacy for Autistic people and the parents and carers of Autistic people. As an Autistic-led organisation, we put Autistic people at the centre of our work. We honour diversity as Autistic reality, acknowledging and supporting all of our members whatever their history, expression of identity or support needs.

TARA is founded on the core position that Autism is a form of neurodiversity, a natural part of the diversity of human neurology.1 As such we repudiate all therapies aimed at compliance and suppression of Autistic behaviours, reject stigmatising and victimising language of any sort, and strongly reject attempts to “cure” Autism.

TARA works within the social model of disability, which recognises the impact that structural and environmental conditions have on a person’s ability to function and live a meaningful life. As such, we challenge preconceived ideas about the capacity of Autistic people, and reject simplistic labels that seek to categorise our abilities and challenges. We practise the principle that all behaviour is communication, and challenge the primacy given to verbal speech as an indicator of a person’s intellectual capacity or ability to live a meaningful live.

The TARA survey To ensure that our submission centred the voices and experiences of Autistic people, TARA developed a survey that provided our members with the opportunity to respond directly to the Senate Select Committee’s terms of reference. In a society where medical professionals and non-Autistic parents of Autistic children are often positioned as experts in Autism to the exclusion of Autistic individuals, we feel that these voices are essential to the committee’s process.

The survey was conducted online, and promoted through TARA’s two Facebook communities: one for Autistic parents and parents of Autistic children, and one for Autistic adults whose gender identity is other than cisgender male. TARA members also shared the survey among their own communities. The survey consisted of open-ended questions that related to each of the committee’s terms of reference for this inquiry. Responses were analysed and coded to determine common themes and issues, and quotes have been used to illustrate these themes. Unless requested by the respondent, all names attributed to quotes are pseudonyms, and quotes are presented verbatim with only minimal editing to address spelling where necessary.

1 Singer 1999

4 www.tara.org.au TARA submission to the Senate Select Committee on Autism

Survey respondents We received 44 responses to the survey. 33 respondents identify as Autistic, 5 believe they may be Autistic, and 6 are non-Autistic parents of Autistic children. Respondents are aged between 24 and 70, with 85% aged between 30 and 60. All respondents spoke English as their main language, and all but one were born in dominant English-speaking countries. The overwhelming majority of respondents were from white cultural backgrounds, reflecting barriers to diagnosis and awareness of Autism in culturally and linguistically diverse communities. 80% of respondents live in capital cities or major non-capital cities.

Reflecting the composition of TARA’s Facebook communities, 82% of respondents are cisgender women. Other respondents included transgender women; non-binary, agender and gender-questioning people; and a cisgender man. 64% of respondents identify as heterosexual, and 35% as LGBTIQA+. This high percentage correlates with a broader trend of Autistic people being more likely to be part of the LGBTIQA+ community.

The median household income of respondents is $1,600 per fortnight, and one third of respondents have incomes of less than $1,300 per fortnight. Of great concern, 9 respondents with children had household incomes of less than $1,000 per week. 78% of respondents have tertiary qualifications, including 36% with postgraduate qualifications, but only 38% are in full- time or part-time work. 33% of respondents are full-time carers of Autistic children.

40 respondents listed other illnesses, conditions, disabilities or neurodiversities they have as well as Autism, reflecting the high rates of co-occurring mental health diagnoses and chronic health conditions experienced by Autistic people.2 ● 30 have anxiety ● 24 have ADHD ● 18 have depression ● 17 have post-traumatic stress disorder ● 12 have chronic illnesses or auto-immune conditions ● 9 have gastrointestinal conditions ● 6 have obsessive-compulsive disorder

2 Lai et al. 2019

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Understanding Autism

Terminology and capitalisation The Autistic community strongly prefers identity-first language when referring to ourselves. This means we are “Autistic people”, rather than “people with autism”. This is a consistent and growing preference, and is also building momentum among family carers, although not as rapidly among professionals.3,4 The primary reason for this shift in terminology is the acceptance of Autism as an integral part of our lives, a filter through which we process the world, rather than being something separate from us as people.

We also choose to capitalise Autism because we consider “Autistic” to be a cultural identity rather than an individual difference. The Autistic community is a subculture with our own expectations, understandings, humour and ways of communicating. There is, too, an element of very Autistic humour in reclaiming a word intended to define Autistic people through the external perception of being ‘self-centred’ and ‘isolated from others’ as a community and cultural identity.

Defining “Autism” and the “Autism Spectrum” Autism Spectrum Disorder is defined as a developmental disability, one of many “mental disorders” included in the current edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). Until 1987, “gross deficits in language development” was one of the core diagnostic components of Autism,5 and it was widely believed that intellectual disability was far more commonly present than absent. Broadening of the concept of “Autism”, along with better case identification, have reduced this figure to around 25% of Autistic people who have no or limited speech past the age of 6,6 and 30-40% having an intellectual disability.7

Despite the growing understanding of Autism as a neurological difference, rather than as deficits in behaviour, social interactions or communication, health professionals and the general public often still understand Autism only through its perceived deficits, and conflate it with intellectual disability and lack of speech.

"I love being autistic. I love that I now know what makes me tick and what I need to thrive. But I don't like sharing my diagnosis with most people because they lack the understanding and look at me and my family through the lens of stigma and deficit" - KL, 42

3 Kenny et al. 2016 4 Bonello 2018 5 American Psychiatric Association 1980 6 Norrelgen et al. 2015 7 Fombonne 2020

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The DSM-5 currently lists three levels of Autism, reflecting different levels of support needs: level 1 indicates some support required, while level 3 indicates very substantial support required.8 These levels are not intended to reflect part of the diagnosis, but the support needs at the time of assessment. However, levels are frequently used as part of the description of the person's "Autism severity". This is also reflected in the common usage of phrases like “high- functioning” or “mild” Autism, contrasted with “low-functioning” or “severe” Autism.

This inappropriate use of labels creates problems for many Autistic people. When someone is labelled as "high-functioning", "level 1" or "mildly" Autistic (or the now defunct “Asperger’s Syndrome”), the very real struggles they experience at different milestones in life or in times of increased stress or burnout, have a tendency to be dismissed, and they may be blamed for "not coping" or "not trying hard enough". Conversely, when someone is labelled as "low- functioning", "level 3" or "severely" Autistic, the assessment at the time this label was applied may not reflect the person's capacity for development over their life, and may result in denied opportunities for advancement and achievement.

The terminology used to describe Autism has also led to misunderstanding and confusion about what the term “Autism spectrum” means. Functioning language and labels lead to the perception that the spectrum is a line from A Little Bit Autistic at one end to Extremely Autistic at the other. Instead, the “spectrum” refers to the constellation of skills of one Autistic person. Specifically, it illustrates the unusually wide variation that one Autistic person may have between one skill and another, and that our functional abilities vary under different levels of stress or sensory input, and fluctuate significantly from day to day and across our lifetime.

Rather than a two-dimensional line, the Autism spectrum is better illustrated as a variety of traits and functions that can vary from individual to individual. These traits include language facility, sensory sensitivity, executive function capacity, perceptual experience, motor skills, and more. Each Autistic person will have a different presentation in each area: One Autistic person may have a lot of sensory sensitivities and requires ear defenders every day to deal with sound, but be a great conversationalist. Another may be highly successful in a professional role that requires analytical thinking and attention to detail, but struggle to drive a car or do day-to-day tasks in a timely way.

Impacts of the medical model of disability for Autistic people The historical and current definition of Autism as a “mental disorder” means that Autism and Autistic people are most often positioned within the medical model of disability, which presents disability as an attribute of an individual, and frames the disabled individual as deficient or impaired compared to an individual without disability. This model, which often stigmatises disabled people, focuses interventions on removing these impairments or deficits from the disabled individual or otherwise rendering them undetectable.

8 American Psychiatric Association 2013

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In contrast, the social model of disability recognises natural diversity in people’s physical, intellectual and neurological capacities and abilities. Rather than a deficit located within the person, the social model understands disability as barriers preventing engagement and participation, and seeks to develop environments which facilitate ability. As Mike Oliver, who originated the social model concept explains: “The problem isn’t that I can’t get into a lecture theatre, the problem is that the lecture theatre isn’t accessible to me”.9

Environmental barriers may include:

● the physical environment, such as buildings with no wheelchair access, or glaring lights in public spaces (for those with vision or sensory processing disabilities), ● barriers of attitude, leading to discrimination or bullying, ● barriers of communication, which may involve refusing to communicate in a medium that is accessible for the disabled person (e.g. requiring telephone communication for those with auditory processing delays), or providing necessary information in a format that is inaccessible to those with disabilities affecting hearing, vision or cognition, ● systematic barriers, such as organisations which deny individuals the reasonable adjustments they require to be able to participate in work or community roles

Many Autistic people identify as disabled. However, we are not disabled because there is something inherently wrong with us, but because we live in a society that does not understand or accommodate our differences in processing and perception.

This disabling social environment means that we are more impacted by our differences and less able to function effectively in our lives. It also means that we are far more vulnerable to other disabilities and chronic illness, particularly mental illness,10 and more likely to die earlier of preventable causes than the general population.11 This is in part associated with aspects of disability such as poverty from under-employment, and more broadly because of the trauma we experience from being Autistic in a society that does not value or support us. Additionally, our marginalised social position makes us vulnerable to exploitation and abuse, which only compounds our trauma. As just one example, Autistic women experience higher rates of sexual harassment, sexual assault and intimate partner assault than non-Autistic women,12 and are ten times more likely than the general population to die by suicide.13

9 Oliver 2018 10 Cashin et al. 2018 11 Hwang et al. 2019 12 Pecora et al. 2019 13 Hirvikoski et al. 2016

8 www.tara.org.au TARA submission to the Senate Select Committee on Autism

Diagnosis and prevalence

“Formal diagnosis is a privilege that is out of reach to many”: Barriers to diagnosis TOR a: Current approaches and barriers to consistent, timely and best practice autism diagnosis TOR c: Misdiagnosis and under representation of females in autism data, and gender bias in autism assessment and support services

Autistic people face multiple barriers to accessing a formal diagnosis, which can be insurmountable for many. The impact of not being diagnosed, of not understanding why we experience the challenges and differences that we do, and of not being able to access support to help us address those challenges, can be profound.

25 of our survey respondents have received a formal diagnosis of Autism. Reflecting the typical pattern of women and non-binary people being diagnosed later in life, 64% were diagnosed when they were 40 or older, and only one was diagnosed before turning 18. While the vast majority of us have known since a very early age that we are different to others, and in some cases suspected we were Autistic before accessing formal diagnosis, late diagnosis or a lack of diagnosis often means we are not able to access the kinds of interventions and support that would help us build skills to make our lives happier and more meaningful.

"It's common, especially for females such as myself, to fly under the radar as a child and therefore face a late diagnosis due to no fault of our own … Being undiagnosed has come at a huge personal cost to my welfare, including suicidal depressive attacks, from a very early age." - Eva, 30

Another major issue, reflected in our respondents’ overwhelmingly white cultural backgrounds, is the difficulty that people from culturally and linguistically diverse (CALD) face in accessing and receiving diagnosis of Autism. The experiences of white Autistic people are not generalisable to CALD Autistic people, and more research and effort needs to be committed to engage with CALD Autistic people and their communities. Of particular importance for Australian society is the lack of culturally appropriate information, support and services for Aboriginal and Torres Strait Islander communities.14 Just as Autistic people must be centred in all research, policy and services about and for us, TARA is adamant that First Nations sovereignty and self-determination must be recognised and practised in any and all activities related to these communities.

14 Lilley, Sedgwick, and Pellicano 2019

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"Your ability to access a timely diagnosis depends on your ability to pay”: expense and waiting times By far the greatest barrier to diagnosis that we encounter is the expense. Two-thirds of our respondents cited this issue, and many paid between $1,000 and $2,000 to access diagnosis through the private health sector.

For people who are not able to pay for private diagnosis, the waiting times in the public system can be prohibitively long. Even for those who can afford private assessment, wait times can be many months.

"We were told we’d wait 18-24 months for a free assessment through the public system, or we could pay out of pocket to go through the private system. We were fortunate; we could afford to pay over $1,000 for a private assessment, and had an appointment and diagnosis within 3 months. With the diagnosis reports we were able to access NDIS and early intervention. I know other families who can't afford to pay this kind of money, who have been waiting literally a year or more for an appointment, and who can't access early intervention without a diagnosis. It's totally unfair that your ability to access a timely diagnosis depends on your ability to pay." - Rachel, 41 (parent of Autistic child)

“A lot of doctors don’t know much about Autism”: Lack of skilled and informed medical professionals The other major barrier that many of us face is a widespread lack of training and understanding among medical professionals about Autism.15 Many of us have experienced medical professionals, including GPs, psychologists and psychiatrists, who have been unsupportive or actively dismissive of our experience and our desire to pursue assessment for Autism. These medical professionals espouse limited and stereotypical understandings of Autism, which creates barriers especially for women and other people who do not present with behaviours that are most associated with Autism.

“I couldn't get a referral from a GP or psychologist so had to self-refer. The psychologist told me it was ludicrous that I would 'want' a 'chronic disability' that 'can't be treated' when I already had another mental health diagnosis that supposedly could be treated. I think it's important for people's understanding of their own neurology to be taken seriously, and examined clinically in a comprehensive and efficient way. It's also important for people to have some options and information as to what's next, following diagnosis.” - Elizabeth, 33

The pervasiveness of this limited and often stigmatising understanding of Autism can also prevent many of us from considering Autism as an explanation for our experiences, which further prevents us from seeking a diagnosis.

15 Arnold, Higgins, and Trollor 2020

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These barriers are compounded for people who live outside metropolitan areas, who need to travel long distances to access diagnosis and support and may have significantly fewer options when it comes to choosing their health providers.

While many of our experiences with medical professionals have been challenging, those of us who have been fortunate enough to find skilled and supportive medical professionals who understand our Autism have found the process of assessment and diagnosis overwhelmingly positive and affirming.

“There are still medical professionals who think being female precludes being Autistic”: Underdiagnosing and misdiagnosing girls, women and gender diverse people The barriers to diagnosis are disproportionately felt by women, girls and gender-diverse people. As a result of this, the frequently cited 4:1 ratio of Autistic men to Autistic women appears to be based on a long-standing male bias in Autism research and diagnostic criteria, rather than true prevalence of Autism.16,17

There are two main ways in which this gendered barrier manifests: in a lack of awareness and understanding of more internalised presentations of Autism that women and girls often display, and the related issue of misdiagnosis of Autistic women and girls.

Even if we are able to access diagnosis, gendered barriers mean that women, girls and gender-diverse people find it more difficult to access appropriate support services. This lack of support is something that those of us who have come to recognise our Autism as adults, and those of us who are parents seeking assessment and diagnosis for our female or gender diverse children, have encountered.

“There are still medical professionals who think being female precludes being Autistic. This affects access to referral and to diagnosis. There is also stronger societal pressure on women and girls to fit into expectations of femininity, so our Autism gets missed.” - Jane, 46

Internalised or feminine Autism The stereotypes that everyone knows of Autism and Autistic people are predominantly male: Rain Man or the young boy obsessed with trains. Far less understood, both among the general population and medical professionals, are forms of Autism that are less immediately evident to observers, but are just as foundational to the Autistic person’s experience and just as capable of presenting both serious challenges and opportunities for how the Autistic person navigates the world.18

16 Loomes, Hull, and Mandy 2017 17 Rutherford et al. 2016 18 Muggleton, MacMahon, and Johnston 2019

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Some of the key traits of this more internalised kind of Autism include having intense interests that are more aligned with “typical” interests for the person’s age, gender and culture; being more likely to withdraw into anxiety, depression and self-harming behaviours rather than have angry or disruptive outbursts; putting more effort into social interaction and communication; and shyness and passivity in social situations.19

One of the most common traits of this type of Autism is camouflaging or “masking”: the practice of Autistic people actively working to suppress their Autistic traits in order to fit into neurotypical society.20,21 Because of social conditioning and gender norms, women and feminine-presenting people are more likely to use masking, however just because we are able to mimic “normal” behaviour does not mean that those of us who mask well are not being impacted by our Autism. In fact, the effort that camouflaging takes can have mental health impacts and cause stress, anxiety, depression and exhaustion.

“It feels as though society just thinks I'm not "Autistic enough" because I'm smiling, maintaining eye contact, have a job etc. But being able to do these things doesn't mean I'm not struggling. And it doesn't mean that I'm not Autistic and that I don't need understanding and support.” - Eva, 30

While this form of Autism is currently often associated with women and girls, and may be more common for women, we strongly reject any simplistic binaries of a “male Autism” and a “female Autism”. In particular, Autistic people of all genders can perform camouflaging behaviour.22

“I believe there is the autism that sticks out. An extroverted kind of autism that has received all the attention. Now we are seeing the introverted, internalised autism. The autism only the autistic person may be aware of. The autism that people have learnt to mask. The autism that bothers no one but the autistic person. The autism that is dismissed. It is not a male or female trait, it is more part of their personality.” - KL, 42

Misdiagnosing girls and women Another impact of society’s limited understanding of Autism, particularly internalised presentations of Autism, is that many of us are misdiagnosed with other conditions.23,24 Among our respondents are Autistic people who have been misdiagnosed with bipolar disorder, borderline personality disorder and psychosis, before receiving a correct diagnosis of Autism.

Many Autistic people live with depression, anxiety and post-traumatic stress disorder, either as a consequence of the stress and trauma of living as Autistics in a neurotypical world or due to other circumstances, and many of us also have ADHD. However, this type of co-occurrence is

19 Lai and Szatmari 2020 20 Muggleton, MacMahon, and Johnston 2019 21 Lai and Szatmari 2020 22 Lai et al. 2016 23 Luciano et al. 2014 24 Takara, Kondo, and Kuba 2015

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quite different from the experience of misdiagnosis that many of us encounter when trying to understand our neurology.

Misdiagnosis with serious mental illnesses or personality disorders stems from a lack of understanding and a failure to recognise Autistic people who don’t fit into the stereotypical profile, and has profound and long-lasting consequences. Not only do we miss out on the knowledge and support that would help us to manage our lives as well as possible, but misdiagnosis can also mean we are prescribed inappropriate medication - often powerful psychoactive drugs that can profoundly affect our mood and ability to function - and inappropriate support interventions that can be at best unhelpful and at worst, actively damaging. Indeed, some of us choose to avoid seeking formal diagnosis for Autism because of the fear of misdiagnosis.

“Looking back it’s pretty clear I was having autistic meltdowns and sensory overload, but the idea that an intelligent articulate girl could have autism just didn’t exist. Instead I was put on meds that made me feel like a zombie - I felt like I was going crazy.” - Danni, 40

“I find our people pretty much anywhere I go”: Prevalence of Autism in Australia TOR b: The prevalence of autism in Australia

As Autistic people acutely aware of the multiple barriers to assessment and diagnosis, and the limited understanding of Autism in the community, we believe that the rates of Autism in Australia, and worldwide, are likely to be higher than current diagnostic rates suggest. We welcome the increased rates of diagnosis, but rather than being evidence of increasing prevalence of Autism we simply see it as more Autistic people being recognised for who we are.25

Increasing diagnosis and community understanding of the true prevalence of Autism is incredibly important. As discussed above, limited and stereotypical understandings of Autism, and the stigma often associated with Autism, prevent us from accessing the support we need. Many of us who only learned of our Autism later in life have struggled for decades with a sense of our difference, but without any understanding of why. This can have devastating consequences for our mental health and wellbeing, and our ability to build meaningful and satisfying lives for ourselves.

“I believe there are far more than are diagnosed. I know it is quite possible to go through life believing that you are merely broken, perhaps not trying hard enough, or maybe really not a good person, as you've been told by others, and have no idea that in fact you are autistic.” - Beth, 42

25 Fombonne 2020

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Support services and providers

“There are too many providers and programs with outdated ideas about autism”: Inadequate and inappropriate services and support TOR e: the demand for and adequacy of Commonwealth, state and local government services to meet the needs of autistic people at all life stages TOR f: the interaction between services provided by the Commonwealth, state and local governments, including: health and mental health, education, employment, justice, and housing

People with disabilities experience multiple barriers in accessing health care and other services, and the quality of the service they receive is often lower. This is true for Autistic people, who are less likely to have their physical or mental health care needs met, and have poorer experiences of communicating with their health care providers.26,27

Both in the responses to our survey and in broader conversations in our communities, we overwhelmingly find the current services available to Autistic people to be insufficient, and in many cases inappropriate to our needs. Our experiences with service providers are often marred by their lack of understanding of Autism, and a deficit-based approach that sees our Autism as a problem to be fixed. Women and gender diverse people also experience disbelief about their Autism, which further impacts their ability to access appropriate services. For some of us, this experience of stigma and fear of discrimination leads us to hide our diagnosis from service providers, which makes it more difficult for us to access the support we need.

“They are not Autism-friendly”: Services are not meeting the needs of Autistic people Navigating and accessing services is a serious challenge for many Autistic people. Coordination between different kinds of services - including health, education, employment and housing - is often insufficient, making it difficult for us to receive the wraparound support we may need. This is amplified for those of us who live outside of metropolitan centres and those who experience other forms of disadvantage.

As Autistic people, we also face specific obstacles in accessing services because of the executive function and communication challenges that are part of our Autism. Executive function relates to a person’s ability to undertake planning, prioritisation, and understand and navigate complex social and bureaucratic structures. Communication challenges can include requiring more time to absorb and understand information, and difficulty in comprehending information delivered verbally.

26 Raymaker et al. 2017 27 Arnold, Higgins, and Trollor 2020

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This makes it extraordinarily difficult for us to get the support we need, especially for those of us who need access to multiple services both within and outside of the health field. For Autistic people, often women, who are in care-taking roles for their families, this challenge is compounded further: not only do they need to seek out services for their own support, but also those needed by their children and other family members.

Alongside the challenge in navigating access to services, Autistic parents seeking services for their Autistic children can also face unsupportive and even hostile responses from service providers. Our respondents report being criticised for their parenting, and being accused of exacerbating or even causing their children’s challenges. The very real threat of discrimination can therefore make Autistic parents extremely hesitant to engage with service providers.

Even if we are able to navigate the service system, however, it is far from certain that we will receive the kind of support we need. Many of our respondents noted that the services they engage with do not understand the needs of Autistic people, and are predicated on highly medicalised and deficit-focused approaches to Autism that not only fail to meet our needs, but can be actively alienating or upsetting:

“There are too many providers and programs with outdated ideas about autism. They make me feel very wary. Every time I have looked for psychological or speech services for myself or my children, they fall well short. The ableist language, the pathological approach, the false narrative and scaremongering are all very off putting.” - KL, 42

Reflecting this, the majority of services that do exist seem geared around crisis support or interventions for Autistic children, with little support available for Autistic adults. This is especially the case for those of us who are able to live independently, but struggle with meeting the demands of everyday life. When these services do exist, they are typically delivered by private providers and therefore are unaffordable for many of us.

“At present, you can have a well supported autistic life if you are in a great financial place. If you are struggling to make ends meet, affordable wrap around services just don’t exist.” - Lisa, 50

“Trying to force them to be someone they’re not at the expense of their wellbeing”: Harmful interventions and Autistic children Many government-provided therapeutic services for Autistic children are based on Applied Behaviour Analysis (ABA), a behavioural modification intervention that aims to “correct” Autistic behaviour through positive and negative reinforcement from the practitioner and the children’s other caregivers.

15 www.tara.org.au TARA submission to the Senate Select Committee on Autism

ABA, and other practices like it, are premised on the idea that Autism is a disorder that must be corrected, and that Autistic people are “better” when we behave in ways that are indistinguishable from non-Autistic or neurotypical people. We reject this goal as fundamentally flawed and inappropriate: this kind of intervention can be successful in suppressing Autistic behaviours and making Autistic children behave in ways that appear neurotypical, but at a devastating cost.

The USA-based National Child Traumatic Stress Network notes that children with intellectual and developmental disabilities are highly likely to experience trauma, particularly where their interpersonal communication is affected, and that the children’s’ inability to communicate their trauma results in high-level behavioural challenges.28 So many of the so-called "challenging behaviours" associated with Autism are a response to being unable to communicate trauma, and not "behaviour" as defined in ABA.

They also note that the behavioural therapies like ABA do not help these young people recover from trauma that they have experienced, and instead only reduce the “challenging behaviours”, by teaching the child to camouflage and suppress their distress. This is the opposite of good trauma-informed practice: ignoring distress and imposing suppression of responses only compounds trauma and demoralisation, and puts the person at high risk for mental health issues and suicide.

A recent study of PTSD in Autistic adults shows that 40% of those assessed had probable PTSD within the past month, and 60% had probable PTSD at some point in their life.29 (In comparison, 3.5% of the general population has PTSD, and 9% have had it at some point in their lives.) Furthermore, Autistic adults who had been subjected to ABA were more than twice as likely to have PTSD symptoms than those who had not experienced ABA.30 This is a natural consequence of our being systematically directed away from and even punished for our trauma responses, distress, or natural behaviours and ways of engaging with the world.

Autistic adults almost universally condemn the practice of ABA, and we are deeply concerned that the majority of publicly-funded services for Autistic children use an intervention that directly harms and impedes these children from living happy and meaningful lives as Autistic adults. Autistic parents and neurotypical parents of Autistic children need support to help their children flourish, but these therapeutic services must be based on acceptance of Autism as a neurotype and premised on supporting us to understand our unique strengths and challenges and build meaningful lives.

“Everything is based on "fixing" the autistic person rather than supporting them to live their best life possible” - Jac, 34

28 Trauma and Intellectual/Developmental Disability Collaborative Group 2020 29 Rumball, Happé, and Grey 2020 30 Kupferstein 2018

16 www.tara.org.au TARA submission to the Senate Select Committee on Autism

Outside of government-provided services, the stigmatised and limited understanding of Autism within the community means that many parents of Autistic children are vulnerable to unscrupulous individuals and businesses who promote dangerous and harmful “treatments” to “cure” Autism, often at a high cost. These include potentially lethal interventions like encouraging parents to force their Autistic children to drink bleach; and subjecting children to chelation therapy, a process of injecting them with ethylenediaminetetraacetic acid, which is only clinically recommended for heavy metal poisoning.31 Other unproven “treatments” include the use of homeopathy and essential oils, which are at best ineffective and at worst, dangerous to the health of Autistic children.

"When a child is newly diagnosed parents often jump onto the Autism Merry Go Round carting their child to specialist after specialist. The constant schedules, exhaustion, car trips, long waits in professional offices can send the message to the child that there is something wrong with them ... There are many other activities such as art therapy, music therapy or equine therapy that can be incorporated into the child's life early on without making them feel they need to be fixed at a very young age" - KD, 47

“NDIS is a battlefield”: NDIS is failing Autistic Australians TOR h: the adequacy and efficacy of the National Disability Insurance Scheme (NDIS) for autistic people

Because of our need for support, many Autistic people engage with the NDIS. However, many of us find it a stressful, demoralising and even traumatic service to engage with. The system itself is challenging to navigate for all the reasons mentioned earlier in this submission, and NDIS staff are not trained to positively engage with us. As a result, the NDIS is not successful in supporting Autistic children and adults to live their best possible lives.

“As an adult I have not sought NDIS support. For my son, I have refused for him to attend any planning meetings. I plan and talk to him about his goals and needs. The NDIS system is deficit based and he does not need to hear himself spoken about in negative terms and finds this distressing (this leads to self harm) – the world already does this enough” - Mimi, 49

The most common experience among our respondents of dealing with the NDIS is one where our Autism or that of our children is poorly understood, and our stated needs are not listened to and considered within our plans. Many NDIS planners do not appear to have training in Autism and how it manifests in both children and adults, and as a result make decisions for our plans that are inappropriate and contrary to the recommendations of our medical professionals.

31 Davis et al. 2013

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"For my son's 2nd plan I was directed by an NDIA Review Officer to have him re-assessed at a cost of approx $3000 because they needed to know if he was still autistic. She was unaccepting that autism was a lifelong developmental disability and suggested that children grow out of "it" and adults did not need support." - Mimi, 49

"We have to fight so hard to have basic services funded like speech therapy, occupational therapy and psychology and then unqualified NDIS planners make decisions and cut funding even when specialists have said it is needed to support the child" - Jane, 46

We typically encounter very little support to empower us in planning our service needs and choosing services. In many cases, while choice may be technically available, the services we need do not exist or we are not properly empowered to investigate the available options and make a good choice. This is especially the case for those of us with complex needs, who overwhelmingly experience NDIS as unsupportive.

We experience a lack of consistency between planners, which leads to Autistic people with similar needs receiving very different levels of support. Funding is often insufficient to meet our support needs, and funding allocations can be misaligned with what we require.

For some respondents, self-management of NDIS plans has proved to be an empowering experience, but many of us who engage with NDIS feel frustrated, stressed and overwhelmed. Far from it helping us to live more satisfactory lives, engagement with NDIS can be severely detrimental to our wellbeing.

"The whole process is humiliating, de-humanising, traumatising, abusive, dis- empowering and suicide-inducing. And I am not using any of those descriptive words flippantly. I am serious about the amount of damage that the current NDIS system inflicts" - Gemma, 58

“Listen to Autistic people”: Toward best practice diagnosis, services and education TOR d: international best practice with regards to diagnosis, support services and education, effectiveness, cost and required intensity

The current services for diagnosis, support and education available to Autistic people in Australia are lacking. In order to reform them, governments and service providers must include Autistic people in influential positions on decision-making bodies that develop policy and practices for service delivery, and fund and support Autistic-led organisations that build the capacity of our community to effectively advocate for our needs.

18 www.tara.org.au TARA submission to the Senate Select Committee on Autism

Central to any efforts to reform services must be a reframing of Autism as a natural and valid neurological diversity. There must be a conscious shift away from a medicalised deficit-based approach toward one that accepts Autistic people as we are, and recognises our strengths as well as our challenges. As well as policy and practice changes, this reframing needs to include investment in campaigns and educational efforts among service providers and the general public to increase awareness and acceptance of Autistic people. The recent public awareness campaign co-created by Amaze and the Victorian Government is an excellent example of this kind of work, but far more needs to be done.

“[Best-practice services] wouldn't make you feel like Autism is a pathology or something terrible. Being Autistic is who I am, and explains my many strengths, as well as my challenges.” - Eva, 30

"Services would focus on helping children and young people to develop their skills and talents to live happy lives, participating in the community. It would not be designed to "train the Autism out of them", but to help them to become their best selves and take part in the community" - Jane, 46

Moving toward best practice services must also include increased access to well-trained health professionals and other providers. Autistic people need providers who can undertake assessment and diagnosis, and deliver services in a timely manner and in a way that suits our individual needs.

We also need greater understanding of our communication needs, and flexible communication options to allow us to engage successfully with our service providers. Many Autistic people have challenges with verbal speech communication, so a best-practice approach for us will include routine and reliable availability of augmentative and alternative communication channels such as Auslan or Key Word sign, letterboards, text-to-speech synthesisers and apps, communication cards, as well as simple options such as emailing, rather than speaking on the phone.

Finally, a best-practice approach to services must support the needs of Autistic people across their life course, especially at key transition points for education, employment and living arrangements. It must also support the families and carers of Autistic children and Autistic adults with high support needs.

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Social inclusion and community

“We are valuable and loyal employees, steadfast friends, and generous and giving partners”: Social inclusion and exclusion of Autistic people TOR k: the social inclusion and participation of autistic people within the economy and community TOR g: the social and economic cost of failing to provide adequate and appropriate services, including to support key life stage transitions of autistic people

As Autistic people, we currently experience marginalisation and social exclusion within many spheres of Australian society. We have challenges in participating in society because of our Autism, but the far greater barrier we face to social and economic participation is the stigma and discrimination we encounter from others. The costs of this exclusion include poverty, poor mental health and wellbeing, social isolation, and the loss of contributions that Autistic people can make to our communities. Addressing the stigma that we face and consciously building a society that is more accepting of diversity will not only support Autistic Australians to participate more actively, but will also support the social inclusion of many other marginalised communities.

“It can be very isolating and our world seems to keep getting smaller”: The social isolation and marginalisation of Autistic Australians

Unemployment, underemployment and employment discrimination 42% of Autistic adults in Australia participate in the workforce, lower than the overall rate of employment for people with disabilities (53%).32 This low rate reflects the fact that for Autistic people, our ability to participate in employment is predicated not only on our unique challenges and abilities, but also on the presence or absence of supporting and enabling structures such as personal and family relationships, workplace accommodations, and support services.

However, the types of employment accommodations and support services that we require are rarely available. Most employment interventions are premised on the idea that Autism is a problem that the Autistic person must address and change in order to be able to engage in work, and there are very few interventions that encourage workplaces to adapt to Autistic employees and support us to use our unique strengths and capabilities.33

32 Scott et al. 2019 33 Scott et al. 2019

20 www.tara.org.au TARA submission to the Senate Select Committee on Autism

As a result of this, many Autistic people are not able to utilise their full capability in work. Many of us work in roles that are below our qualification and skill levels, and often receive poorer conditions and lower pay than non-Autistic colleagues in similar roles.34 Chronic stress and burn-out is common, and in some cases leads to us being unable to work at all.

While some of our respondents have developed careers based on self-employment, contract and consulting work to enable them to better control their work environment, many others wrote about their grief and frustration that they were not able to meet their potential.

“I have always worked in jobs that are well below my capabilities because of the toll that the commuting, politics, and social aspects take on my well-being and ability to contribute in a way that suits my needs while also enabling me to contribute in a meaningful way.” - Gemma, 58

As well as a lack of appropriate workplace supports, many Autistic adults experience active discrimination and bullying within the workplace and in hiring practices. This makes gaining and maintaining employment even more difficult. Conscious and unconscious bias on the part of employers and other employees negatively impacts our ability to succeed in job selection processes, and once in employment it can create a hostile work environment for us. Many of us avoid disclosing our Autistic identity for fear of discrimination, but can still experience it because of our “unusual” or “abnormal” behaviours.

“At my last job my boss mocked and criticised me in front of my colleagues for doing autistic things like fidgeting with pens, being really detail-focused and not making the right facial expressions. It was so awful. I hadn’t disclosed that I was autistic and I was scared to do it in case it made things even worse.” - Danni, 40

"Supporting me would mean that I could be open about being autistic, and not fear discriminatory or bullying behaviour from people I work with ... It means that I could openly ask for supports and accommodations at work to meet my own needs” - Mimi, 49

These barriers to successful and sustained employment mean that Autistic adults in Australia are far more likely to experience economic hardship and poverty, and the associated social consequences.

"Lack of support means Autistic people may leave education early or stay in education for many additional years. Either way, this means we don't get jobs, develop financial independence or move out of home at the same rates as the general population. The cost to us is lack of independence, self- determination, financial stability" - Jane, 46

34 Scott et al. 2019

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Social isolation and the importance of peer communities As well as the challenges and discrimination we face in employment, Autistic people are also vulnerable to social isolation. Again, this is due to a combination of the inherent challenges with communication and social engagement that many Autistic people experience, and the negative consequences of a society that is at best uninformed, and at worst discriminatory and hostile toward Autistic people.

The challenges we face in building and maintaining interpersonal relationships can leave us without strong social and community networks and for many of us, the effort of maintaining employment and necessary life tasks leaves us without the energy to participate in our communities in a meaningful way.

“I find the real world exhausting and can only manage it in small doses. This makes me feel less productive than most people and less worthy somehow. I struggle with that. It can be very isolating and our world seems to keep getting smaller.” - KL, 42

These challenges would be much easier to navigate, however, if we were not also subject to exclusion, bullying and discrimination. The experience or fear of these can make many of us wary of attempting to forge new social connections.

“Autism often comes with surprising gifts and talents, but the level of ignorance and bigotry that sometimes surfaces in public comments about autism is both distressing and destructive, as well as wasting what could be our significant contributions to the community.” - Sue, 70

Some of us have found valued and supportive communities in interest-based organisations like sporting clubs and artistic groups. Many of our respondents, however, pointed to Autistic peer communities as an important place for connection, support and understanding. These communities, TARA amongst them, provide a space for Autistic adults to share their experiences with people who are similar to them, and foster an environment of acceptance and celebration of Autistic reality.

“My social life is almost totally Autistic now, and since my diagnosis. My quality of life has just blossomed! I have friends. Real friends. Friends who understand me. Both in the 'real world' and online. My life has improved so much because I live WITH my Autism. Not in ignorance of it, when I felt like such a failure as a human being.” - Anna, 56

Many of these communities are wholly or mostly online, in Facebook groups and other forums. This not only allows Autistic people across Australia and the world to connect, but also provides a more accessible form of community for the many Autistic people who find face-to- face social engagement challenging and tiring.

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“I feel more included by these [online Autistic] communities than I have ever felt in my life” - Ashley, 28

“Having Autistic peers is crucial to our wellbeing and we need a place to find our tribe.” - Jane, 46

While there are undeniably gaps in accessibility for online communities - including for culturally and linguistically diverse Autistic people, and people without access to internet and computer technology - the importance of these groups for helping Autistic people to build positive social connections that value and accept them as they are cannot be overstated.35

“Diversity is the reality of the human condition”: What social inclusion looks like To support the social and economic inclusion of Autistic people in Australia, we need widespread efforts across all spheres of our society. Autistic people will only be able to live up to their potential when Australians are genuinely aware and accepting of Autistic peoples’ needs and experiences, and our schools, workplaces and other institutions create the flexible environments that would help us thrive.

“Supporting Autistic people would help so much! I would have been able to contribute so much more to society, cost so much less on mental health services etc needed over long-term. I have lots of strengths and talents ... but I've just spent so much energy, time, resources etc struggling to get by!" - Eva, 30

Part of this change would include recognising and harnessing the strengths that many Autistic people have in areas like logic and pattern recognition, creative problem solving, and the “outside the box” thinking that comes from our different perspective on the world.

"There is a huge range of abilities and disabilities associated with autism. But generally speaking, I believe many of us are honest, earnest, empathetic and clever. We follow logic, we work hard and are frequently effective problem solvers. Our slightly different approach to the world can be the approach that finds the quirky solution, the clever twist that overcomes problems. We are valuable and loyal employees, steadfast friends, and generous and giving partners" - Sue, 70

It would also mean accepting and respecting Autistic people’s behaviours, perspectives and communication styles. Rather than continuing with an approach that demands Autistic people conform to non-Autistic norms, we strive for a society that accepts and welcomes our differences. This kind of accepting, flexible and diverse society would not only support greater wellbeing and inclusion for Autistic people, it would also benefit many other groups in Australian society. As just two examples: flexible working environments would enable broader

35 Crompton et al. 2020

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economic participation for other people with disabilities, parents and carers, and many others. Acceptance of diverse modes of communication and expression would support the social inclusion of culturally and linguistically diverse people, people with mental illnesses, Deaf people, and many others. There is nothing to be lost, and everything to be gained, by working to create a society that is inclusive of difference and diversity.

“Diversity is the reality of the human condition. At every turn, when segregation has been removed, business, communities and individuals all see a benefit. Racial desegregation, gender desegregation, decriminalisation of same sex relationships have all made society richer and better … Ignoring the contributions that Autistic people can make must necessarily harm society through: lost ideas; the financial cost of supporting those who are not permitted to work to their ability; social harm of treating people as damaged or broken; costs of health services arising from trauma, PTSD, psychological harm, physical and emotional violence done to Autistic people because of their perceived strangeness or difference from non-Autistic people.” - Joanna, 48

Research, strategy and advocacy

“Support us to live our best lives”: Autism research and strategy development TOR i: the development of a National Autism Strategy and its interaction with the next phase of the National Disability Strategy TOR j: the adequacy of funding for research into autism

“We could be such valuable assets and allies if we were listened to”: Centring Autistic voices in strategy development We welcome the plan to develop a National Autism Strategy to complement the new National Disability Strategy. As this submission highlights, Autistic people encounter many of the same challenges and barriers to social participation as other people with disabilities, despite the wide variation in how each person experiences their Autism. As such, we support the social model of disability and the holistic policy approach that underpinned the first National Disability Strategy and recommend a similar breadth of focus in the Autism Strategy.

We are adamant that the strategy must have an Autism-positive framework at its core and that its development, implementation and monitoring must be led by Autistic people. As Autistic people engaging in consultation processes, our perspectives are too often regarded as secondary to those presented by medical professionals or non-Autistic parents of Autistic children. In the development of the Strategy it is therefore especially important that the lived experience, needs and interests of Autistic adults and children are consciously sought and centred.

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“The voices and lived experience of adult Autistic people need to be prioritised over parents of Autistic children. We were those children. Those children will grow up to be us. While any parent knows their child best, Autistics know Autism best. We could be such valuable assets and allies if we were listened to.” - Anna, 56

Additionally, the Strategy must recognise the diversity of the Autistic community and the ways in which Autistic people in other marginalised communities experience compounded and intersecting disadvantage.

“I have little interest in finding a cause”: Research funding and focus Reflecting the dominant medicalised and deficit-based approach to Autism, current research is largely focused on the “basic science” aspects of Autism, seeking to understand its causes and correlations. However, there is strikingly little research undertaken with the goal of finding therapies, services or other interventions to support Autistic people to live more meaningful and functional lives.36

Our respondents overwhelmingly expressed frustration and concern with the current research focus, especially where it intersects with the calls from some parts of the community to find a “cure” for Autism. Instead, we recommend that funding be directed toward research that examines therapies and interventions that would support improved life outcomes for Autistic children and adults.

“I have little interest in finding a cause, aside from the potential to learn more about how to diagnose more effectively and better understand the differences with non-autistic people. I am concerned about all the focus on treatment and cure, as though autism is a disease. We need help, not eradication.” - Beth, 42

"Stop trying to find a cause or cure. We are not broken, we are just different. Support us to live our best lives and we will in turn contribute more fully to society" - Jac, 34

This research needs to include examination of the experiences and needs of Autistic adults and teens along with Autistic children, to provide a strong evidence base for a successful life course approach to support. It needs to be grounded in a trauma-informed approach, and recognise the co-existing physical, neurological and psychological conditions that many Autistic people live with.

Additionally, as with the development and implementation of the National Autism Strategy, we believe that Autistic people must be included as research partners as well as participants, and that research and research priorities must be openly communicated to the Autistic community.

36 Pellicano, Dinsmore, and Charman 2014

25 www.tara.org.au TARA submission to the Senate Select Committee on Autism

“Nothing about us without us”: The importance of Autistic advocacy TOR l: the capacity and sustainability of advocacy, self-advocacy and self-determination supports for autistic people, including mechanisms to self-represent to government as enshrined in the United Nations Convention on the Rights of Persons with Disabilities

Autistic people have been advocating for their needs and rights for at least the last thirty years,37 and in Australia we are fortunate to have many strong and committed Autistic advocates. We stand behind the principle of “nothing about us without us”, and are adamant that all advocacy related to Autism must be led by Autistic people. As with the development of the National Autism Strategy, while we believe that health professionals and parents of Autistic people have an important role in advocacy, those voices must not be prioritised over those of the Autistic community.

“Listen to us. People talk over autistic people all the time. Governments and society need to actively seek out autistic people to hear what we have to say. Non-autistic parents of autistic children are not representative of our community. We need people to listen to us and take action based on what we say.” - Joanna, 48

In addition, we must expand capacity and opportunities for self-advocacy within the Autistic community to include Autistic people from culturally and linguistically diverse backgrounds, and those with diverse genders and sexualities, communication methods and intellectual abilities.

“Policies should be developed with autistic people from a wide range of backgrounds. They should be the primary source for consultation and policies developed without this input are unlikely to be very helpful for us.” - Beth, 42

In order to achieve this, governments must commit public funding to Autistic-led organisations and support the creation of a peak body for Autistic-led organisations that can coordinate nationally and act as an advisory council to governments and other organisations. We call on government to work in partnership with these organisations to build the capacity of Autistic people to articulate our needs and perspectives in policy- and practice-based environments. We also call on the government to ensure that these environments are founded in a strengths- based approach to Autism, and accept and celebrate Autistic culture.

37 Dekker 1999

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Takara, K., Kondo, T., and Kuba, T. (2015). ‘How and why is Autism Spectrum Disorder misdiagnosed in adult patients? From diagnostic problem to management to adjustment’, Mental Health in Family Medicine 11: 73–88.

Trauma and Intellectual/Developmental Disability Collaborative Group (2020). The impact of trauma on youth with intellectual and developmental disabilities: A fact sheet for providers, National Center for Child Traumatic Stress, Los Angeles, CA and Durham, NC.

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Appendix: TARA survey

The following survey was designed to collect data relating to our community and the Terms of Reference. The Terms of Reference are restated and contextualized for ease of understanding.

Introduction The Autistic Realm Australia (TARA) is collecting responses from Autistic people to form our submission to the Senate Select Committee's inquiry into Autism.

The survey includes demographic questions about you, and questions that relate to each of the terms of reference that the Select Committee is including in their inquiry.

You are welcome to answer as many or as few questions as you feel comfortable with.

All responses are anonymous, but there is an option at the end of the survey to confirm if you would be willing for your responses to be quoted in TARA's submission, and to state if you would be willing to speak to the committee if the opportunity comes up.

If you have any questions about the survey, or if you need any assistance in completing it, you can send a message to The Autistic Realm Australia Inc at https://www.facebook.com/autisticrealm/

Your experience of Autism These questions are to record if you and/or your children are Autistic. TARA regards self- identification as a completely valid affirmation of Autism.

Are you Autistic? • Yes • No • Maybe

Have you received a formal diagnosis of Autism? • Yes • No

If you have a formal Autism diagnosis, how old were you when you received that diagnosis?

Are you the parent, carer or guardian of an Autistic child or children? • Yes • No

Has you child or children received a formal diagnosis of Autism? • Yes - 1 child

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• Yes - 2 or more children • No

How old was your child or children when they first received a diagnosis? (Please fill in one response per child.)

Apart from Autism, do you have any other diagnoses, conditions, disabilities or neurodiversities? • ADHD • Intellectual Disability • OCD • Dyslexia and/or dyscalculia • Dyspraxia • Depression • Anxiety • Bipolar • Schizophrenia • Borderline Personality Disorder • Post-Traumatic Stress Disorder • Chronic illness/autoimmune disorder • Ehlers-Danlos syndrome • Positional Orthostatic Tachycardia Syndrome • Epilepsy or other seizure conditions • Gastrointestinal disorders • Cerebral palsy • Multiple sclerosis • Arthritis • Paraplegia or quadriplegia • Prefer not to say

Demographics These questions help us understand a bit about you, so we can relate your experience and that of other survey respondents to the broader Australian community.

What year were you born?

What gender do you most identify with? • Cisgender Female • Transgender Female • Cisgender Male • Transgender Male • Nonbinary • Intersex • Agender • Prefer not to say

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What is your sexual identity? • Heterosexual • Gay • Lesbian • Bisexual • Pansexual • Queer • Asexual • Prefer not to say

What is your current relationship status? • Single, never married • Married or in a monogamous domestic partnership • In a polyamorous relationship • Widowed • Divorced • Separated • Prefer not to say

What is your highest level of education? • Primary school • High school up to Year 10 or equivalent • High school up to Year 12 or equivalent • Certificate I - IV or equivalent • Diploma, Advanced Diploma or equivalent • Bachelor degree • Postgraduate degree • No schooling completed • Prefer not to say

Which of these best describes your main occupation? • Student • Business owner • Full-time parent or carer • Retiree • Working full-time • Working part-time • Working casual hours • Unemployed • Prefer not to say

What is your fortnightly household income before tax? (Please include all sources of income, such as wages, government payments, business income, etc.) • No income • $1 - $299 • $300 - $599 • $600 - $799 • $800 - $999

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• $1,000 - $1,299 • $1,300 - $1,599 • $1,600 - $1,999 • $2,000 - $2,499 • $2,500 - $2,999 • $3,000 - $3,499 • $4,000 - $5,999 • $6,000 or more • Prefer not to say

What type of city, town or region do you live in? • Capital city • Major non-capital city (100,000 or more residents) • Large or medium town (10,000-100,000 residents) • Small town (200-10,000 residents) • Rural area • Remote area

Are you Aboriginal or Torres Strait Islander? • No • Yes, Aboriginal • Yes, Torres Strait islander • Yes, both Aboriginal and Torres Strait Islander

What country were you born in?

What is the main language you speak at home? • English • Other

How would you describe your ancestry and/or cultural background?

Responses to the Terms of Reference Questions These questions are based on the inquiry’s terms of reference - the questions and issues the committee are considering. You can read the full terms of reference here: https://www.aph.gov.au/Parliamentary Business/Committees/Senate/Autism/autism/Terms of Reference

Diagnosis and prevalence Tell us about your experiences of getting or seeking an Autism diagnosis. What made it difficult? What would make it easier? How do you think the diagnostic process *should* happen?

Do you have any thoughts or experience about whether Autistic people are common in Australia?

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There are more boys and men diagnosed with Autism than girls and women, even though there are more women in Australia than men. Is there a difference in the way girls and women are diagnosed and supported?

Are there more Autistic men than women, or are men just more likely to get a diagnosis?

Do you have any experience with misdiagnosis or with gender bias in the diagnostic process or support services? If so, please describe your experiences.

If you are a non-binary or transgender Autistic person, please tell us about your thoughts or experiences.

Services Do you currently access any Autism support services? • Yes • No • No, but I have in the past

What kind of services have you used? • Occupational Therapy • Speech Therapy • Art and/or Music Therapy • Psychology or counselling • Psychiatrist • Support worker • Assistance animal

How well do you think the support services provided by the Government or Council meet the needs of Autistic people? Please explain your answer.

Please describe what you think support services would be like if they were really helpful and supportive for Autistic people.

Which other kinds of services have you accessed? (options provided for accessed in the last 12 months, or accessed ever) • Health Services • Mental Health Services • Education Providers • Employment (both workplaces and employment services) • The Justice System • Housing Services

What was your experience like using the above services?

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How do you think supporting Autistic properly will help the rest of society (communities, workplaces, the Government)? What kind of problems do you think *not* helping Autistic people creates? (May include financial cost, lost ideas, unfinished qualifications, work hours, health)

NDIS This section will talk about your experience of accessing NDIS as an Autistic person, either for yourself, or on behalf of your child(ren).

How well do the NDIS staff you’ve dealt with understand Autism? (Please explain, and give any examples that will help us understand)

Is the Early Childhood Early Intervention Pathway for Autistic children useful? Why or why not?

How well does the NDIS support Autistic people with complex needs?

How well does the NDIS support and empower Autistic people to be involved in the planning process?

How well does the NDIS support and empower Autistic people to choose and control the support services they use?

National Autism Strategy A National Autism Strategy is a whole-Government strategy to support Autistic Australians. It means there are policies about helping Autistic people in all government departments that manage areas affecting Autistic people's lives - e.g. education, research, employment, health and mental health, diagnosis, and community accessibility. The next questions will ask about things that might be included in a National Autism Strategy.

What would you like to see in a National Autism Strategy if one was developed?

What would you like to see being done in Autism Research? Are the right things being studied?

Do you think enough money is put towards Autism research? Please explain why you think that.

Social inclusion How do you participate in your communities as an Autistic person? Do you feel included? Community participation may include necessary interactions, like shopping or appointments, as well as doing activities with people or groups other than your family. It may also mean either in person or online.

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What are your experiences of employment as an Autistic person? Examples might include finding work, disclosing your Autism, asking for adjustments in the workplace, staying in work, bullying, Autistic burnout, etc.

Advocacy How can Australian governments and society support Autistic people to advocate for ourselves and represent ourselves to governments? Examples might include how the Government consults with us about our needs, how they design policies and make decisions that affect us, clarifying with Autistic people what discrimination on the grounds of Autism looks like, appointing an independent group to ensure discrimination issues are dealt with, etc.

Use of Information Questions about how we can use your information in the submission.

Would you be willing to have any of your responses quoted in the TARA submission? Any details which would identify you will be removed from the quote. • Yes • No

What name would you like attached to the quotes? This can be your real name, a made up name or nickname, or no identity at all.

If we have the opportunity to speak at a hearing of the inquiry, and you would you like to join us to speak, please enter your name and email address here:

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