Thank you much for holding this inquiry. Autistic people have so much of value that they can contribute to society if adjustments are made to respect our different ways of being and processing and contributing. It is also really important to acknowledge that our knowledge of autism is still in the early stages and that autistic people often have a range of other diagnoses (common to also have ADHD, EDS, Epilepsy, Intellectual Disability etc.) and different ways of processing (executive functioning challenges) that impact on life outcomes.
I also understand that there are autistic people severely impacted that need higher levels of care and the work that their families do to support and advocate is to be respected acknowledged and supported.
I request to remain anonymous as I am sharing details of my daughter’s life and struggle to get an autism diagnosis. People discriminate and I don’t want to expose her to that. I am also sharing my experience as an adult woman in my 40s realising I was autistic while pursuing a diagnosis for my daughter. We live in the country, remotely more than 600 kms from a capital city. I tried on a visit to the city to get a diagnosis a few years ago but was told I was ‘too high functioning’, which discouraged me and put more pressure on me once again to have to work it out for myself. If I had access to telehealth medicare rebated diagnostic service that understood women I’d do it in a heartbeat. Feel free to help bring that dream about in your National Autism Strategy recommendations so all women (or people who didn’t fit a stereotype of male autism) regardless of their location can access diagnostic services!
a. current approaches and barriers to consistent, timely and best practice autism diagnosis;
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Paediatrician lack of updated knowledge on best practice autism diagnosis An autism diagnosis is a difficult thing to get from medical and allied health professionals. Knowledge is constantly being updated on diagnosis however Drs training on developmental delays would be outdated from University if undertaken anywhere from 5 to 50 years ago. Particularly for girls that don’t fit a stereotype of what autism is or for other autistic people that don’t fit a male stereotype of what autism is. My daughter had a developmental delay diagnosis at around 3 which I got via a Private Paediatrician as the state diagnosis service had an over year waiting list. However it took another 8 years to get an autism diagnosis. Why? I was being asked a list of questions that focused on stereotypical male presentations of autism. My daughter did not line up trains. (some kids do, but it is not a pre-requisite, it is a behavioural observation). My daughter was very attached and affectionate to me and there seems to be misconceptions about eye contact or sociability in certain contexts that can delay diagnosis. Recommendations:
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Incentivise Paediatricians, Clinical Psychologists and for participating in professional development to refresh their knowledge on autism diagnosis current best practice.
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Review Medicare rebates for diagnosis items cost compared to time taken to diagnose so that a professional is being appropriately compensated for their time.
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(the cost saving of a diagnosis and referral for treatment compared to autistic people not understanding their identity for decades)
c. misdiagnosis and under representation of females in autism data, and gender bias in autism assessment and support services; You have a generation of autistic women who did not have access to diagnosis or assistance. Sometimes we are referred to as the lost generation. Some form of catch up access is required to be able to access an autism diagnosis. This also as I understand makes it more difficult for autistic people who are Aboriginal or from other ethnic backgrounds to receive a diagnosis. Yes there is under representation of females, but also other disadvantaged groups. I have a copy of the Paediatrician’s letters and reports from the time my daughter had a diagnosis of global developmental delay. When I read the reports back it is clear to me that had the health professional understanding of autism in girls that my daughter could have got a diagnosis at that time. It wasn’t until my daughter was in Year 5 that the thought crossed my mind that my daughter was autistic when I saw her on the margins of social play and she was not interested in watching a film with her peers. It was through her interactions with a friend that was more stereotypically autistic that I recognised how important diagnosis could be to a sense of identity and coping mechanisms. Please don’t make people seeking a diagnosis having to have a referral from a GP. Recommendation: Support access via telehealth to all women or people inquiring about an autism diagnosis to a specialist service with knowledgeable staff. People able to self refer to reduce barriers for accessing the service as speaking on phones or seeing a GP and speaking up can be a significant barrier to accessing services for autistic people.
e. the demand for and adequacy of Commonwealth, state and local government services to meet the needs of autistic people at all life stages;
State government education services are not adequate to meet the needs of autistic school children. There is some extra help after a diagnosis but it is shared. There is a special school or fit into mainstream. Fitting into mainstream is extremely difficult and is a cause of many of the mental health difficulties autistic adults face.
f. the interaction between services provided by the Commonwealth, state and local governments, including:
a. health and mental health, It is quite difficult to get access to the right mental health services for autistic people in times of crises. I’ve note the youth mental health service in the state where I live exclude autistic young people. A federally funded service Headspace doesn’t seem to have any particular knowledge on autism. The services that takes NDIS funding has a churn of workers. Regionally I have yet to find appropriate mental health supports for my teenager. Maybe Telehealth to those with actual knowledge on autism and manifestations of anxiety or depression and how effective treatment can often be different for autistic people?
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b. education, Please look into the adequacy of State Government education services for students with disabilities. In a mainstream high school it is a battle to get adjustments to meet the needs of the autistic student. For example my daughter has some assistance in early high school for a particular subject that she struggles with and gets out of some sport lessons. That is all + some meetings with her teachers and subject preference for electives on occasions. I’ve had meetings with the school teachers and coordinators etc. but never is the conversation these are all the different things other autistic students have found helpful, how would this fit with your child’s needs? If you asked the school they would say yes we offer adjustments for students with disabilities. Is asking parents/students what they want inclusion? I didn’t even know what to ask for to start with. Now I know a bit more, but still don’t think I know enough. Inclusion is giving the whole range of possible strategies available as options and then tailoring to the individual child’s needs. In primary school I occasionally received an Individual Education Plan for my child. I’ve never received a survey or a pamphlet from my daughter’s high school on what service she could receive or ask for with autism. – I have a certain amount of education and energy to be able to advocate (being autistic can make this harder if I get emotionally upset) for my daughter with her school. But what about other kids without someone to advocate or follow up as much? State government education is funded by grants, as a Federal Government you should hold states accountable for providing a right to learn for children in a way that is compatible with their individual needs. I guess that is a pipe dream, but in the meantime if you could consider: Recommendation: Hold State and Territory Governments accountable to survey parents and stakeholders on disability education provided at least annually as well as including hand outs on examples of services that can be provided so parents and support organisations know what to ask for.
There are particular programs in certain schools that accommodate autistic kids in primary schools. However it is a geographic lottery. City children are advantaged. In the city my daughter had a global developmental diagnosis delay at 3 and was fortunate enough to be accepted to a class for kids with developmental delays. My daughter was in a special program with 5 other kids in kindergarten. The teacher was amazing. This enabled my daughter to get back into mainstream school by half way through her second year at school. Particularly in high school some autistic kids would really warm to online learning small classes. Why are these autism programs only offered in city schools? What about country kids? Where is the imagination of State Governments? After Covid, think bigger.
Occasionally I get a glimpse of what inclusive education might actually be. Sadly this is from journal articles and not in real life for my daughter. https://www.tandfonline.com/doi/full/10.1080/00131911.2019.1566213 Autism, intense interests and support in school: from wasted efforts to shared understandings - Rebecca Wood
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The approach of following a students in depth interests is what we practice at home outside of school hours with my daughter and this has had the most positive results. I have NEVER heard the words curriculum modification or individualised learning uttered by my daughter’s high school. It isn’t even in their frame of vision, because State Government’s are not held to account for inclusive education. This is compounded by living regionally where the standards are in practice way worse.
c. employment, Interviewing techniques make it harder as an autistic person to display your worth. There are often thin slice judgements made negatively about you because you are different being autistic. Even in the way you move your body or speak See https://www.nature.com/articles/srep40700 Neurotypical Peers are Less Willing to Interact with Those with Autism based on
Thin Slice Judgments
Really take a moment to stop and think how this feels. Whereas an autistic person has a lot of ability to contribute. My skills are research, reliability, dependability, thinking differently, understanding others disadvantage, empathy and working well in a supportive team and mentoring others. It is through organisations I have worked up in and had time to act in a role that I perform more confidently at interview. I see positive ads in the federal public service that are more inclusive interview / recruitment models. How about State and Local Government. What are they doing? You could add diversity hiring practices into funding grants.
d. justice, and Justice is a good point to bring up safety. Safety is where my life went off the rails for a while and I went from being a taxpayer to a welfare recipient when I had children and was in an abusive relationship. What has this to do with being autistic? I was incredibly socially naïve. This can be predicted and screened for in autistic teenagers, to ensure social supports are in place. It was only because of my university education that I was able to get back into the job market and work my way up again to be again a taxpayer. (not saying you have to be a taxpayer, but trying to show the opportunity cost of not teaching about safety to autistic teenagers.) Recommendation: Fund online autistic peer reviewed education on relationship safety, particularly focusing on girls or those who are vulnerable to be taken advantage of by others. This is a cost effective model. The cost of domestic violence is so very much greater, and the loss time of contributing to society.
g. the social and economic cost of failing to provide adequate and appropriate services, including to support key life stage transitions of autistic people; The cost I observed for my daughter of a later diagnosis is that she is still coming to terms with her autistic identity and sensory differences. This makes teenage years quite hard, when there is the most social pressure to be the same as everyone else. An early diagnosis in childhood is really important in that it will always have been part of that child’s identity. This can reduce mental health issues as supports are already in place. I’m really sad reflecting on my daughter’s sensory sensitivity to noise. I didn’t know about this when she couldn’t speak, or even when she could speak. We just didn’t realise, all I knew was that by the end of the day she was so overwhelmed and tired and it made the last few hours of the day so very difficult. If only the Paediatrician had been better educated.
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From what I have observed from other autistic women executive functioning and being supported in this is often the crucial make or break between being able to hold down a job and earn a living, or participate in society. In particular for women with Autism and ADHD this can be a big challenge. Please recognise this when you consider women for NDIS. Being able to control and manage thoughts and actions is needed for so many aspects of daily living. Without support for executive functioning many autistic women can slip through the cracks.
h. the adequacy and efficacy of the National Disability Insurance Scheme (NDIS) for autistic people, including:
a. autism understanding within the NDIS, From my understanding around 25% of participants in the NDIS are autistic. I’m worried that you are worried about how you can afford to support autistic people and their families with the cost blow out of NDIS. Maybe your economic calculations are wrong, what is the economic cost/loss of autistic people not contributing and being included in society? What online learning or orientation is there for NDIS staff? Is it adequate, has it been peer reviewed by autistic NDIS staff and autistic community members? That is the gold standard. The other issue is that service providers receiving funding from the NDIS should also do training on understanding autism. – I have felt judgement/annoyance from my daughter’s service providers, they should understand that autism is mostly genetic and extended family members may be autistic themselves and to be better focused in their customer service. Recommendation: NDIS training on autism be compulsory for all NDIS staff. Any module be developed in consultation with autistic adults and families accessing NDIS services and include stories from autistic adults, autistic children and families.
It seems unfair that sometimes advocacy by advantaged parents results in a large funded plan compared to some of the Aboriginal kids that I see in the community I live in who don’t have anyone advocating for them in a way that maximises support.
NDIS funding reports should be made public on plans average funding by postcode. I suspect that transparency of such data may fuel effort into working harder to remove structural inequalities in the NDIS.
i. the adequacy of funding for research into autism; There seems a lot of focus on ‘cure’ and not on supporting autistic people who exist. Once you understand that autism is 80% genetic origin the why seems less important than helping people to live their best life.
j. the social inclusion and participation of autistic people within the economy and community; My daughter has struggled with not wanting to go to high school at times, because the school don’t make enough adjustments for her sensory sensitivities. The school environment can be overwhelming, intense and too much. I can see how being educationally disadvantaged with social challenges then feeds into less employment. NDIS does not cover education which is why the rights of autistic children to education access need to be encouraged. How can the Federal Government assist State Governments to do the right thing in education inclusion?
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k. any other related matters. I think it is really important to acknowledge that our understanding of autism is still quite limited. I have only in recent years started to understand about the key role concepts such as executive functioning and interoception play in autism. I’ve seen autistic kids with pathological demand avoidance profiles that struggle very hard with the schooling system. This profile doesn’t seem recognised in Australia yet by diagnostic clinicians.
I have a lot better hope for my daughter’s identity as an autistic person and her knowledge of her own strengths. We encourage these constantly and hope she will be able to make a career to support herself for the future.
I work full time, I contribute economically to our country, I’m privileged in many ways. However I’ve also faced quite a few challenges in my lifetime where my contribution to society was diminished due to being autistic. In particular anxiety and my way of processing made it quite difficult in my teens and 20s to speak out loud with confidence. This made it difficult at time getting through my 2 Uni degrees and on occasions in the workplace. Some autistic women can be quite vulnerable to abuse as in the past I had a tendency to believe people’s words. Through comparing actions to words of people I have better protection now.
Thank you for caring and taking the time to look into the services, support and life outcomes for autistic people in Australia.
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