Select Committee on Autism, Department of the Senate, Parliament House, Canberra, ACT 2600. To the Committee, Introduction My name is David Cameron Staples. I am a son, a husband, a father, a professional worker in IT, I have lived in Melbourne my whole life, and I am on the Autism spectrum. Or, as we autists tend to prefer, I am “autistic”. Since I received my Asperger’s Syndrome diagnosis in 2010 at the age of 37, I have been reconciling myself with this new revealed identity, relearning how to better manage myself and my relations with others, and, over the last few years, attempting to advance the cause of Autism advocacy and access in my workplace at the University of Melbourne. Please note that what follows is based on my own experience and understanding. I am not a researcher (although I do make an effort to stay abreast of the research), and I do not speak for the University of Melbourne. I speak as an advocate for myself, and for my autistic kin, including those who aren’t so lucky as to be able to speak on their own behalf, easily or at all. I have tried to highlight key points below by bolding the main point and applying callout marks in the margins, as in this paragraph. I would make more recommendations for where to go next, but I think the main problem is that either we still don’t understand the question well enough yet, or else that it’s blindingly obvious what the answer is, but no-one’s done anything to implement it yet. Contents Introduction 1 Contents 1 Terms of Reference A — Current approaches and barriers to consistent, timely and best practice autism diagnosis 3 On a series of barriers: personal experiences. 3 On a series of barriers: the current context 4 On the final insult 4 Terms of Reference B — The prevalence of autism in Australia 5 On the progress of epidemiology 5 On diagnosis levels by age cohort 6 On hiding the condition, and the effects of hiding 7 On what is being hidden from 8 Terms of Reference C — Misdiagnosis and under representation of females in autism data, and gender bias in autism assessment and support services; 9 Terms of Reference D — International best practice with regards to diagnosis, support services and education, effectiveness, cost and required intensity; 11 On diagnosis 11 On treatment 11 Terms of Reference E — The demand for and adequacy of Commonwealth, state and local government services to meet the needs of autistic people at all life stages; 14 Terms of Reference F —The interaction between services provided by the Commonwealth, state and local governments, including: i. health and mental health, ii. Education, iii. Employment, iv. justice, and v. Housing; 15 Terms of Reference G — The social and economic cost of failing to provide adequate and appropriate services, including to support key life stage transitions of autistic people; 15 On the tyranny of numbers 15 On the want of a nail 16 Terms of Reference H — The adequacy and efficacy of the National Disability Insurance Scheme (NDIS) for autistic people, … 16 On gaining entry to the NDIS: a case study 16 Terms of Reference I — the development of a National Autism Strategy and its interaction with the next phase of the National Disability Strategy; 19 On what shouldn’t need to be said 19 Terms of Reference J — The adequacy of funding for research into autism; 19 Terms of Reference K — 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; 20 On advocacy and consultation 20 Terms of Reference L — Any bill that relates to matters within the scope of this inquiry that is referred to this committee; and 20 Terms of Reference M — any other related matters. 21 On the possibility of an adequate summary 21 Terms of Reference A — Current approaches and barriers to consistent, timely and best practice autism diagnosis On a series of barriers: personal experiences. In 2009, after a period of slow and increasing exposure to the concept of Asperger’s Syndrome and the Autism Spectrum, the sense of self-recognition I felt in autists’ descriptions of their own internal lives and experiences of the world had become too strong to deny. At the end of 2009, the day before my 37th birthday, I made a public statement on my blog identifying as autistic. With the encouragement of my wife, I began the search for an official diagnosis at the beginning of January. I eventually received that diagnosis on the 30th of September of that year, and I consider myself lucky to have gotten it that quickly and easily. By the first week of January, I had made attempts to find out how to get a diagnosis, and become more frustrated than enlightened. The Autism Victoria (as it was then) website was less than helpful, especially for someone who was coming in confused, ignorant, and anxious. The site itself did not seem to be laid out in a way which made any logical sense to me, and while looking for answers to the question “how can I find out if I am autistic”, was led a merry chase around the site, eventually ending up with a statement that “Autism Victoria is able to assist you to locate an experienced psychologist.” and a link. The link led to the “Contact Us” page, and no further information. I put in a request for help to the email address listed, and received in reply a few days later a PDF containing a list of psychologists and their contact details. Autism almost always involves some form of Social Anxiety. Making a phone call is difficult and stressful at the best of times. A long list of phone numbers to cold call is as good as a large fortified wall to someone with social anxiety. It got even better when, on going through the list and looking up websites and the like, I found that many of them were taking child referrals only, or female referrals only, or both. Or didn’t answer my attempts to contact them. Or whose websites were so tonedeaf to autistic ways of thinking that it was obvious that they either didn’t want me to contact them, or else if I had I would only have frustrated both them and myself in the attempt to communicate. (And I despaired at the prospects of the children taken there by their parents). After a while of this, I went to a GP to ask for advice. I ended up having to explain first to him what Autism is, then why I thought I should be tested for it. He agreed, but was of no other help. I went to the Counselling Service of the University where I work. They were of no help either. I was eventually recommended The ASD Clinic1 by a friend, and they had a straightforward website, with the answers easily available to the questions I was asking, and next to none of the fluff which had warned me away from the other clinics I had found. They also had a waiting list, but they were straight with me, and let me know they’d take me on. It turned out they were on that list from Autism Victoria, but it was so daunting working through that list that I hadn’t made it that far. The cost was more than $700, which was not a trivial expense at the time. I got my diagnosis. It took almost seven months, a great deal of personal support, and a large dose of good luck. On a series of barriers: the current context Since then, I have spoken to other people who have wondered whether they might be on the spectrum, and been wondering what to do next. I’m not sure the situation is very much better now. Autism Victoria are now Amaze2 . And while they have greatly improved their website, one of the things which annoyed me in the beginning is still there: the first question the site asks is to ask the reader’s relation to autism: I am: … an autistic person; a parent or carer; newly diagnosed (a new category since my first quest); a professional; an educator; or an employer. What there is not is a “looking for diagnosis” option… the need for which might be considered a symptom in itself. Autists are literal, and there is no obvious category there for “I don’t know”. An autist who is looking for advice on how to find out if they are autistic or not will not see a category that refers to them. By clicking hopefully, one might find the Autism Advisor service, one of the services being around “assessment and diagnosis”, but it’s not immediately obvious for those seeking help where to find it. And, as I will describe later, Amaze has other problems not of its own making to deal with. To be clear, I am not raising this to get that specific site changed, but to highlight a more systemic problem: there is no easily findable pathway for people who think they are autistic to get to the point of getting a diagnosis. There is no obvious way to find out how one can get a diagnosis as an adult, or who to ask to find out, and little help getting to the point of receiving one.