Select Committee on , 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 . 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 .” 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 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 Clinic 1 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 Amaze 2 . 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. Finding a helpful clinic or professional is hit-or-miss, and, in my experience, relies on the pure dumb luck of asking the right person.

1 https://www.theasdclinic.com.au/

2 https://www.amaze.org.au/ On the final insult

Further, Medicare does not cover Autism assessment or diagnosis for an adult. The cost is currently more than a thousand dollars, and is not subsidised under Medicare for an adult patient. Even if you can find a place to get an assessment, the cost will make it practically impossible for many, including the people who most need it: those who don’t have the support of their parents, those who haven’t been able to get or keep a job, those who are already at the limit of their endurance keeping up with surviving day to day, and have no overhead for improving their circumstances or chasing down answers.

Where there is medicare assistance for autism diagnosis, it stops at the age of eighteen. That leaves entire generations, who were born before there was any understanding of the breadth and depth of the autism spectrum, to their own resources to gain the diagnosis which may be the key to obtaining supports, resources which may well meagre precisely because of that condition and the lack of supports which only a diagnosis could obtain. This would seem to be the very definition of a Catch 22. The barriers to obtaining a diagnosis for an adult are formidable.

Terms of Reference B — The prevalence of autism in Australia

On the progress of epidemiology

When there is a spectrum disorder in the process of being recognised and described, it is natural to concentrate on the most serious, disabling, and non maskable cases first. Indeed, it’s likely for these cases to set the standard so high that less intense cases may not even be recognised as the same condition. This describes the course of Autism definition and diagnosis over the years. Kanner’s view on the condition was different to that of Asperger, and they may not have considered each other’s descriptions to be of the same syndrome. It wasn’t until the DSM IV that Asperger’s Syndrome and Autism were described in the same context (the differences being that Asperger’s was defined as having a lack of intellectual disability, and a lack of language delay). In DSM5 they were merged into Autism Spectrum Disorder, where it was recognised, among other things, that the Autism symptom of “abnormal function in language” could very well be met without needing to be a “delay”. 3

3 That is: abnormally fast language development, with vocabulary well advanced of that expected by age, can also be a sign of autism, being one of the characteristics of the “little professors” whom Asperger described. Some doctors, notably people like Allen Frances, have claimed that Autism is being overdiagnosed, and that the rising numbers are an artifact of more open diagnostic criteria. There are two main responses to this argument: first is that when you discover a syndrome which has been present but unrecognised, the natural progression is that the numbers go from zero to a few, and then accelerate while more is learned about the condition and how to diagnose it. Increasing numbers is not a sign that there are more autists than there used to be, but that we are getting better at detecting the ones who have always been there. The second argument is that, when the diagnostic standards are checked and compared, there is no diagnostic inflation. 4 So Dr Francis was explaining a pattern that doesn’t exist. When I was a child, there was no such thing as “Asperger’s Syndrome”, and “Autism” was certainly not a concept which would be applied to someone like me. It was with better understanding of the condition that it was realised that the symptoms can be subtler than was previously realised, and that a condition can be disabling without being casually obvious. Identification of autism is improving all the time, as diagnostic tests improve, and as teachers and parents and people generally become more familiar with the signs which indicate that testing might be a good idea. 5

On diagnosis levels by age cohort

But that doesn’t help the Gen-X autists out there, especially those who have been able to more-or-less hide, or “mask” their autism. (Also known as “passing”, a term borrowed from the LGBTIQ+ usage.) Those who have struggled, but gotten through with no more explanation than “being odd”, or “being weird”, or “eccentric”, or “he’s just like that”. Much less the Baby Boomer autists, and older still. There is no reason to believe that the proportion of autists in a population by age cohort has been increasing. 6 Which means that there are millions of undiagnosed autists around the

4 https://theconversation.com/is-psychiatry-shrinking-whats-consi dered-normal-142477

5 The autism rate in 2000 was estimated at 1 in 150, the rate in 2006 at 1 in 110, 1 in 68 in 2010, and about 1 in 60 now. There are several theories for this increase, and some of the leading theories are: that there is an epidemic of autism; the diagnostic definitions are broadening; diagnostic standards are getting better at detecting the less obvious but still real cases; or some combination of these. Wing and Potter state (Wing, L. and Potter, D. (2002), The epidemiology of autistic spectrum disorders: is the prevalence rising?. Ment. Retard. Dev. Disabil. Res. Rev. , 8: 151-161. doi:10.1002/mrdd.10029): “The evidence suggests that the majority, if not all, of the reported rise in incidence and prevalence is due to changes in diagnostic criteria and increasing awareness and recognition of autistic spectrum disorders. Whether there is also a genuine rise in incidence remains an open question.” There hasn’t been any identification since then of a rise in incidence after accounting for improving diagnosis.

6 Parner ET, Schendel DE, Thorsen P. “Autism Prevalence Trends Over Time in Denmark: Changes in Prevalence and Age at Diagnosis.” Arch Pediatr Adolesc Med. 2008;162(12):1150–1156. doi:10.1001/archpedi.162.12.1150 , which says “Shifts in age at diagnosis inflated the observed prevalence of autism in young children in the more recent cohorts compared with the oldest cohort. This study supports the argument that the apparent increase in autism in recent years is at least in part attributable to decreases in the age at diagnosis over time.” world. Some of these people may suspect autism as their underlying condition, and might be searching for diagnosis, or searching but unable to obtain it, or in denial of the need to get a diagnosis, or afraid to get a diagnosis in fear of discrimination, or resigned to there being no point in getting a diagnosis at this stage of their lives. The short of it: autism is underdiagnosed among older generations, and the older they are, the less likely they are to have been diagnosed if they are at all capable of passing.7 This has consequences: the ability to deal with the slings and arrows of outrageous fortune is degraded by meltdowns, shutdowns, burnouts, and general reduction of energy from aging. So even if someone has been able to keep up a mask of normality their whole life, this may well fail with age. This isn’t helped by analyses which fail to even consider this effect, and presume that because most diagnosed autists are children, most autists are children. 8 The truth is closer to the case being that children are the most tested for the condition, and it is extremely difficult for an adult to access diagnosis, and, in a sick irony, the harder to access the more they need one. Were you to believe the papers put out by the NDIS, you would be told that I am, as a 45 year old autist, part of 0.1% of the population, based on data from a study comparing two cohorts of ten year olds, two years separated. As if there was no significant change in condition between current children’s diagnostic contexts and mine, such as the condition not being recognised when I was ten. The NDIS, in this respect, seems to be in the same tradition as President Trump regarding Covid19: if you don’t test for it, it doesn’t exist.

On hiding the condition, and the effects of hiding

That mask is something which isn’t to be dismissed lightly either. Consider how something as harmless as left handedness was treated in the past. Difference is punished, and autism is defined as a cognitive and social difference, even if it’s not recognised as such.

7 See, for example, Cassidy S, Bradley P, Robinson J, Allison C, McHugh M, Baron-Cohen S, “Suicidal ideation and suicide plans or attempts in adults with Asperger's syndrome attending a specialist diagnostic clinic: a clinical cohort study.” Lancet Psychiatry . 2014; (published online June 25.) doi: 10.1016/S2215-0366(14)70248-2 , which describes in its introduction some of the systemic causes of lower diagnosis rates in adults.

8 Consider, for example, the graph in the NDIS Outcomes for participants with Autism Spectrum Disorder powerpoint on slide 17, which appears to state outright that there is a higher prevalence rate in children than for adults, citing beforehand two papers which are explicitly about childhood diagnosis and do not directly address adult diagnosis at all. https://data.ndis.gov.au/reports-and-analyses/outcomes-participants-autism-spectrum-disorder citing Whitehouse, A., Evans, K., Eapen, V., & Wray, J. (2018). A National Guideline for the Assessment and Diagnosis of Autism Spectrum Disorder in Australia . Australia: Autism CRC. and May T, Sciberras E, Brignell A, et al., Autism spectrum disorder: updated prevalence and comparison of two birth cohorts in a nationally representative Australian sample, BMJ Open 2017;7:e015549. doi: 10.1136/bmjopen-2016-015549 All autists mask their autism to the best of their ability most of the time , and this masking is a continual effort, requiring energy and concentration. Diagnosis can give the insight necessary to realise why one has difficulties in certain situations, and insights into how to manage these situations. The symptoms of autism can be acute, such as a meltdown (which can range in severity from acute heightened anxiety and adrenaline response, to a full blown panic attack), or existential, like the inability to reliably recognise faces, or the inability to implement complex plans, or the inability to switch between cognitive modes quickly enough or multitask well enough to be able to listen to a lecture and make notes at the same time. Both of these conditions can cause damage, either the sudden shock and long recovery from a meltdown, or the slow degradation of the self caused by not being able to do something which everyone around you says should be easy. How much worse do you think these are when you have no idea what is happening to you or why? Much less how you can avoid or mitigate these difficulties. It is difficult or impossible to prevent injury to yourself, or to treat injuries that happen, if you don’t understand what’s wrong or different. A friend compares it to a situation she saw once where a racehorse broke its leg mid-race, and in shock and confusion and panic kept trying to stand up on the shattered leg. Without a comprehension of what’s wrong, the most likely result is to make everything worse. Without a diagnosis, the compounding effects of meltdowns and burnouts will result in a less functional person than one who understands what’s going on and can effectively take care of themselves. This isn’t just resulting in a less functional person, this is removing that person’s skills and aptitudes from the economy. There’s also the problem of self-esteem. Most of the signs and symptoms of autism are also commonly described using less complimentary terms. “Executive Function Disorder” is more easily labelled “laziness”. Auditory Processing Dysfunction and Prosopagnosia are also “rudeness”. Attention Deficit issues are also “distraction”. These more common terms carry moral force, and they all add up to “I am a morally bad person”. And because abilities in autists are so often variable from context to context and over time, there’s always the voice in the back of the head of “you can read quantum physics textbooks … you write quantum physics textbooks, so why can’t you clean your room? You can remember who won the battle of Aleppo in 1400, why can’t you remember to pay the electricity bill? Why don’t you recognise me in the hall? Why don’t you ? What’s wrong with you? ” Without an explanation, the alternatives are internalised. It must be because I am lazy, forgetful, rude, a bad person . This degradation of one’s self-image lasts even after diagnosis, because decades of believing it and internalising it and having it reinforced by everyday experience takes a lot of getting over. But knowing makes a big difference. But then, consider how many people out there right now have depression, low self esteem, unexplained anxiety, and generally hate themselves because they don’t know better than that they are horrible people and they deserve it. That is why adult diagnosis is important. On what is being hidden from

More than that, autism is still a discriminated-against condition. I have spoken with people who have a diagnosis, and kept it a secret, even from their close co-workers. They are unsure about how to come out to their colleagues, and unsure, sometimes even afraid of the consequences. Will they be discriminated against? Will behaviours which are now just “that’s how they are” become pathologised? Will it be held against them? Will there be legal consequences? Will there be social consequences? Stereotypes exist, and have strength. Will I be thought of as being like Sheldon Cooper? Like Rain Man? As a screeching neckbeard in a basement? And the disclosure of an autism diagnosis is a complicated thing: in one sense it’s a continual thing over a lifetime. There’s always the question in the back of your head whether you should tell them now that you’re on the spectrum, or later, or wait until it comes up, or hide it at all costs. In another sense, it’s a bell that can’t be unrung. An autism diagnosis must be disclosed to, for example, insurance companies. I have personally been refused income insurance because I have an autism diagnosis. We are still seeing whole families denied permanent residency and citizenship in Australia because one of the children has a disability, including autism. 9 We are not unique, though. Should I want to seek permanent residency in another country, I would expect to be denied solely on the basis of my autism diagnosis. And if you disclose at work, what will that do? Sure, it’s illegal to be fired because of a disability, but what about being frozen out? When one is passed over for promotion, is it from merit, or from discrimination? If we request accommodations, will they be granted? Will they be resented? Will their presence be used as a reason to fire me? Will their absence result in my being unable to work well enough, and be a reason to fire me? What does the “reasonable” in “reasonable accommodations” mean, anyway? (I’m serious there: no-one seems to be able to provide an adequate working definition.) Even if a workplace turns out to be brilliant and accommodating, there’s that fear that it won’t be.

9 A very quick Google search brought up Maria Sevilla and her son from Townsville in 2015, Dr Nasrin Haque and her daughter from Sydney in 2017, and the Triwibono family in Canberra and the Custudio family in Queensland in 2019. Those are just the ones from the first page of google relating to autism as the reason. This is a known problem, and an outrage in its own right. Terms of Reference C — Misdiagnosis and under representation of females in autism data, and gender bias in autism assessment and support services;

When I first learned about autism, the accepted ratio of male:female autists was about 10:1. Current estimates are that the ratio is somewhere between 4:1 to 3:1, and females tend to be less likely to be severely affected (where “severity” is measured in terms of intellectual disability and severe communication dysfunction). There are several theories about the differing representation and presentation of autism in females versus males. At this point, none of these theories has been entirely convincing, and very likely some combination of parts of all of them has an effect. There are organic theories, including

● The Extreme Male Brain theory of Baron-Cohen, which many female autists feel to be misguided at best and insulting at worst, also known as the Systematizing Brain Theory, or E/S. 10 11 This is gender essentialist, and has been critiqued as, among other things: over-extrapolating from small statistical differences; assuming organic causes for social behavioural differences; and in what Neuroscientist Cordelia Fine summarised as “Neurosexism” 12 ● The Protective Effect theory, that there is something in female hormones or the female structure of the brain which protects against the worst effects of autism ● The, for want of a better term, Feminine Affect theory, which is that the special interests of autism in girls tend towards socially acceptable forms, including learning to socially fit in. That is, that the expression of autism in females tends to be sufficiently socially conformant as to be more difficult to detect.

And then there are the social theories, including that

● Given identical autistic behaviours in a boy and a girl, especially things which present as shyness, quietness, and preferring to sit and read over running and playing

10 Baron-Cohen S, Wheelwright S. The : an investigation of adults with Asperger syndrome or high functioning autism, and normal sex differences. J Autism Dev Disord. 2004;34(2):163-175. doi: 10.1023/b:jadd.0000022607.19833.00

11 Baron-Cohen S, Richler J, Bisarya D, Gurunathan N, Wheelwright S. The systemizing quotient: an investigation of adults with Asperger syndrome or high-functioning autism, and normal sex differences. Philos Trans R Soc Lond B Biol Sci. 2003;358(1430):361-374. doi:10.1098/rstb.2002.1206

12 Katherine Bouton, “Peeling Away Theories on Gender and the Brain”, New York Times Aug. 23, 2010 https://www.nytimes.com/2010/08/24/science/24scibks.html games, this will be noticed in a boy and more likely lead to an autism diagnosis, where it will be socially acceptable and praised in a girl, and ● Social pressure on girls to fit in and conform is much stronger than on boys, so girls feel much more pressure not to stand out, and so fixate on blending in with their peers out of sheer self-preservation.

I am not able to give first hand anecdotes on the female experience of autism, but most of the autists I know personally are female. And they report that getting a diagnosis as a woman or girl is more difficult, and they get much less leeway in displaying autistic signs and symptoms. They are judged more harshly than men for overt , or showing executive dysfunction, or avoiding social situations, and they don’t get to escape typically feminine social obligations. Friends who are autistic women have their own theories, with similar amounts of handwaving and theorising on little data. One is that there is a combination of all the above, such that women who are sufficiently autistically “unfeminine” do not marry, and over the millennia this results in a selective breeding effect, such that the sex-ratio is affected and the typical presentation is sexually dimorphic. But she also freely admits that this is getting dangerously close to “Evolutionary Psychology” territory, and no better than a Just-So Story in a scientific sense. Until the presentation in women and girls is better understood, I would expect there to be much underdiagnosis of autism in females of all ages.

Terms of Reference D — International best practice with regards to diagnosis, support services and education, effectiveness, cost and required intensity;

These are several, very disparate topics.

On diagnosis

The best practice for diagnosis would seem to be a one-on-one session with an experienced professional, where there is an interview with the prospective autist, if possible with their family, and an intelligence test which is analysed not to gain a single “IQ” number, but to look for characteristic differences in subscores. It is often the case that even where an autist has learned to mask their communication difficulties, there are still characteristic telltales in IQ subscores, such that someone might be, say, at the 99th percentile for spacial awareness or general knowledge, but the 50th percentile for working memory. The whole point of the IQ tests, of course, being that they are calibrated such that most people should score roughly the same in all the subtests. While communication skills can be learned and mimicked well enough to pass an interview, these statistical distributions in an IQ test are a lot harder to mask. On treatment

Best practice everywhere for “treatment” for autism is still in flux, and there is no single answer. Indeed, it may be that there is no single answer, and that you can’t just treat all autists as variations of the same person, and expect the same result. Any more than you could with any person. There is a strong tendency for Applied Behavioural Analysis (ABA), and variants of this practice, to be touted (in some places, enforced 13 ) as the one true therapy for autists, and in some cases, for some purposes, it may be very helpful. But as a general and default approach to autism “treatment”, it has some serious deficiencies. ABA was developed by Dr Ivar Lovaas 14 on the basis of Skinnerian Conditioning 15 . The explicit goal of ABA is to use to enforce “normal” behaviour – indeed, to train a child to become indistinguishable from their peers. (This state is labelled a “cure”.) The reason for a behaviour is explicitly irrelevant. All that matters is that “aberrant” behaviour is suppressed, and “normal” behaviour is enforced. Whatever “aberrant” and “normal” are defined to mean. The first problem is that Lovaasian ABA, strictly applied, is dehumanising: training a child to do what they are told or be punished. Most behaviours which are a source of comfort or stress-relief in autism (and among people as well) are pathologised and targeted for elimination. Fidgeting is interpreted as stimming, and stimming is forbidden. As put it in her poem Quiet Hands 16 :

When I was a little girl, I was autistic. And when you’re autistic, it’s not abuse. It’s therapy.

The second problem is that Lovaasian ABA considers “normal” behaviour to be the sole consideration. The internal state is irrelevant, as is how much stress and concentration is required to maintain that façade of normalcy. Lovaasian ABA is not concerned, by design, with the internal state of the child; only with their compliance. And if the goal is “indistinguishability”, then the provision of accommodations and supports is not just pointless, it’s actively counterproductive. A similar mindset was at the heart of the Oralist movement in Deaf education history. And if you ask a Deaf person now what they think of Oralism, then you will likely learn lots of new swear words in Auslan.

13 Notably in the USA, where ABA is typically the only “treatment” for autism covered by Medical Insurance.

14 http://thelovaascenter.com/about-us/dr-ivar-lovaas/

15 “The program, created by , is derived from work done by B.F. Skinner in the 1930s.” https://www.appliedbehavioranalysisprograms.com/faq/lovaas-approach/

16 https://juststimming.wordpress.com/2011/10/05/quiet-hands/ It doesn’t help Lovaas’ argument to learn that he published papers on using the same ABA techniques for Gay Conversion “Therapy” 17 , and that he’s quoted as having said

“You see you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense – they have hair, a nose and a mouth – but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build a person.” 18

More modern interpretations of ABA have, mostly, moved away from this strictly Pavlovian approach,19 but it still relies on intense and extended training, and on suppressing “unwanted” behaviours. The autistic child does not get to choose which behaviours are unwanted. Moreover, even with the best and most empathetic practitioner, at the heart of ABA, in practice, is teaching the child that they aren’t allowed to say “no”. This is, needless to say, a dangerous thing to train into anyone, but so much more for someone who already has difficulties reading the intent of other people. 20 At its most extreme, ABA leads to the Judge Rotenberg Center in Canton, Massachusetts, which featured, until 2020 when the practice was finally banned by the FDA, the use of strong electric shocks on autistic children to enforce obedience and unquestioning compliance.21 This is, obviously, an extreme example. And yet it was allowed to continue giving electric shocks to children for decades, and it has been fêted by such groups as . And when ABA isn’t implemented in such a doctrinaire fashion, that is used as an explanation for it not working.

17 Rekers, G. A., & Lovaas, O. I. (1974). “Behavioral treatment of deviant sex-role behaviors in a male child.” Journal of applied behavior analysis , 7(2), 173–190. https://doi.org/10.1901/jaba.1974.7-173 ; https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1311956/

18 “After you hit a child, you can't just get up and leave him; you are hooked to that kid" , O. Ivar Lovaas Interview With Paul Chance in , 1974 http://neurodiversity.com/library chance 1974.html

19 The trouble with this is: how far away from Skinnerism can ABA get before it isn’t ABA any more? Many of the people I’ve seen defending ABA are arguably not using ABA, but a more-or-less Skinner-influenced method of training life skills. Put simply: if the goal isn’t to forcibly eradicate all outward signs of autism regardless of the comfort or desire of the subject, it isn’t ABA.

20 Henault (2005) found that children with developmental disabilities have a 1.7 times higher rate of sexual abuse than in the wider population. Henault, I. (2005) Sexuality and Asperger Syndrome: The need for socio-sexual education. In K.P Stoddart (Ed) Children, Youth, and Adults with Asperger Syndrome (pp. 110-121). Philadelphia: Jessica Kingsley Publishers.

21 Including the case of Andre McCollins in 2002, who was tied down and given thirty one shocks. Initially for not taking off his coat, but after that for such “infractions” as tensing in expectation of a shock, and of screaming in pain from a previous shock. Footage of this torture was released by the court when he sued the Judge Rotenberg Center in 2012. A news article on the trial which contains some of the footage is available at https://www.youtube.com/watch?v=4cbFlVn-lX8. You would notice that other patients show minimal reaction to his screams: this is because reacting to someone else’s punishment was itself cause for punishment. While there may be great, and passionate support for ABA in the therapeutic community, and among neurotypical parents of autistic children, its reputation within the community of autistic people is that, even at its best, it’s scarcely better than abuse. 22 23 There are studies 24 which have shown that the PTSD rates in autists who have undergone ABA are higher (47%) than those of Vietnam veterans 25 (30%). I’m not trying to make the case that ABA should be banned altogether, but I do think that there is a case that its use should be more restricted, more regulated, and far more considered than it too often is now. ABA is behaviour modification more than it is treatment or education, and that should only ever be used as a last resort for health and safety reasons, never as a first go-to, and never for cultural homogenisation, or for convenience. We also need more research into childhood interventions and adult coping training which don’t result in such high collateral damage to the people it’s ostensibly helping.

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;

As far as Commonwealth services go, my understanding is that this boils down to the NDIS. And the whole point of the NDIS is that State and local government services are subsumed into or made redundant by NDIS provision. Is there demand? Of course there is. Is there anyone providing services to meet that demand? Everywhere I go to look, whether state or council level, it directs me to either independent specialist groups, peak bodies like Amaze, or the NDIS. The only exception is for school-related supports, and that’s all handled within the various state departments of education.

22 Shona Davison (2019), “Does ABA Harm Autistic People?” https://autisticuk.org/does-aba-harm-autistic-people/

23 Elizabeth Devita-Raeburn (2016), “The controversy over autism’s most common therapy”, Spectrum https://www.spectrumnews.org/features/deep-dive/controversy-autisms-common-therapy/

24 Eg., Kupferstein, H. (2018), "Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis", Advances in Autism , Vol. 4 No. 1, pp. 19-29. https://doi.org/10.1108/AIA-08-2017-0016

25 Eg., O'Toole, B., Pierse, K., Friedrich, B., Outram, S., Dadds, M., Catts, S. (2019). Combat, Posttraumatic Stress Disorder and Health of Australian Vietnam Veteran Conscripts and Volunteers in the Three Decades After Return. Journal of Military and Veterans' Health , 27(1), 42-57. https://jmvh.org/article/combat-posttraumatic-stress-disorder-and-health-of-australian-vietnam-veteran -conscripts-and-volunteers-in-the-three-decades-after-return/ This is a trick question: outside the NDIS and the specific cases of primary and secondary education, there do not appear to be any government services to meet the needs of autistic people at any life stage. I have more to say about the NDIS in my response to ToR H .

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;

What interaction? What services?

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;

On the tyranny of numbers

Current estimates are that the rate of autism in the population is at somewhere between 1% and 2%. The Australian Bureau of Statistics 26 says that in 2018 there were 205,200 Australian (diagnosed) autists. (I make the point that this is certainly an under-reporting of the true number.) Assume, for the sake of argument, that fully half of these people are sufficiently disabled, whether through the severity of autism, or through a comorbid condition such as an intellectual disability, to never have the capability of meaningfully entering the workforce or living independently. (This isn’t a proportion based on any data, but to make a point on the economics of it all.)

26 4430.0 - Disability, Ageing and Carers, Australia: Summary of Findings, 2018 https://www.abs.gov.au/AUSSTATS/[email protected]/Lookup/4430.0Main+Features102018 So that’s roughly 100,000 people who would require lifelong care and support. Without adequate appropriate services, they would rely for this on their families, and that would effectively remove those people from the workforce as well. And then there are 100,000 people who could participate in the workforce, except…

On the want of a nail

Without supports at school, are they going to be able to gain a year 12 education? Without supports at university, even if they have gained admission, how many drop out because they can’t, or don’t know how to, deal with the new environment and demands? How many have difficulty getting a job because they don’t interview well? How many lose jobs quickly because of interpersonal issues they may not even be aware of? How many end up unwell or homeless because they don’t have anyone around to remind them to self-care or seek health care or pay the bills? 27 How much wasted potential is in those 100,000 people, who haven’t been as lucky as I have been? I have a wonderful and supportive wife and family. I have a very well-paying job with awesome, understanding people. I have the support I need without needing to ask the government for it. And I am fully aware that I have been amazingly lucky at every step of the way. Had I not met my wife, or had the good sense to propose, or not found the job I did with the people with whom I have worked, I could easily be in a very different condition right now. Being able to live a decent life shouldn’t be down to luck. And more than that, for those of us who have been that lucky, or that determined to push through the difficulties and disabilities, whether or not they knew that that’s what they were doing, how many of them are hiding their true selves to maintain that success? How many are zombies when they get home because they’ve spent their working days doing their jobs, and consciously pretending to be normal at all times, terrified of being found out? How much wasted effort is there, in this masquerade of normality? How much desperation and unhappiness is society demanding of its autistic members, to the end of not having to be aware of our presence?

27 That is a serious question: how many? I am not aware that any statistics are taken of these numbers. Terms of Reference H — The adequacy and efficacy of the National Disability Insurance Scheme (NDIS) for autistic people, …

On gaining entry to the NDIS: a case study

I have not had need to call on government assistance for my autism, and in that I count myself extremely lucky. Not everyone is so lucky. I’m thinking especially of a friend of mine. She is of a similar age to me, and when we were children there was no category of autism which included us. So she, like me, wasn’t able to be diagnosed until well into adulthood. Only it’s not that simple. She has several children, many of whom are also on the spectrum. With a spread of children over the years, up to her youngest not long in school, she has been able to see the progress of getting support for people on the spectrum, not least in the search for a diagnosis and support for herself, because, as is a very common story for women of her age, it wasn’t until her children started to be diagnosed and she became exposed to information on the spectrum that she realised that the same description explained most of her own difficulties over her entire life. Her view is not a good one. And her view of the NDIS, from the experience of trying to access it, is not one which can easily be described in language fit for a Senate Submission. She has been finding the process more and more difficult over the years, with more and more roadblocks and delays and red tape and obstruction. And the introduction of the NDIS has made it worse. Without going into all the ins and outs of her story, which would be worthy of investigation in its own right, it boils down right now to this: She is certain that she is autistic, but to gain support requires proof. She is not relying on guesswork, because she has a diagnosis, but could only afford to get the one page summary of diagnosis, not the full diagnostic report. She cannot afford to spend the more than $1000 to obtain a new diagnostic report, in no small part because the effects of autism on her working life have left her unemployed and close to poverty. She is trying to find out if the NDIS can help by subsidising this diagnosis, but she can’t get on the NDIS without the detailed report, so no. And even then, it would only count if she had been diagnosed, and then been under treatment for it for a couple of years . Which isn’t covered by Medicare, and she can’t afford. She also has anxiety and depression issues, which will be familiar to anyone on the spectrum. They are a perfectly normal and rational response to being autistic, and struggling with supporting oneself and one’s family without help. These issues would most likely go away if she had support and help with the autism, but they are being treated separately. She has been told that she might be able to get on the NDIS with those conditions alone, but she would have to demonstrate that she is resistant to treatment, which means going on to antidepressants and other medications, which she doesn’t want to do because what’s the point of that if it’s not going to do anything to address the underlying condition? She has been trying to get assistance from the NDIS, and been given the runaround by a bureaucracy: people who promise to help and don’t, paperwork which turns out always to have been filled out wrong, authoritative statements on necessary steps which turn out to be incomplete or wrong, and an absolute refusal to help in any way whatsoever. This is all complicated and abstruse bureaucratic procedure, which requires planning, meticulous organisation, and lots and lots of personal interaction. For a person applying for help with a condition which is practically defined by Executive Dysfunction and Social Anxiety. It doesn’t help that, despite my friend being a deeply intelligent, erudite, and well educated woman, she has difficulty understanding the language in the NDIS forms and communications. I do not believe this to be a problem on her end. It’s like promising to provide assistance for wheelchair users, providing they can climb over a wall. A wall which looks three feet tall from a distance, but grows taller as you approach. She has been trying to get help from Amaze, and they have been doing everything in their power; but in what they’re allowed to do, and in what they have the resources to do, they are limited. And while the promise of the NDIS was great, in practice it has resulted in the systematic shutting down of any organised and funded support structure short of it. There is no way to get a bit of help, or to go to the State government or local council for help, because those structures have all been shut down and subsumed into the NDIS. For all the promise of the NDIS, the current structure looks more like deliberate cruelty: holding out the promise of assistance, under the Catch 22 situation that if you are able to prove to their satisfaction that you need it, you have proved that you’re functional enough not to need it. Never mind the permanent damage the very attempt to access it is causing: mentally, and physically in stress. My friend has ended up in hospital with stress-induced cardiac arrhythmia. Because of this process, which no official body is able or willing to help her with. And she can’t just give up, because it’s not just for her, she’s also fighting for access for her children, and so that she will be able to support her children. Her executive function difficulties make it hard enough keeping up with the demands of everyday life with multiple school-aged children, let alone supporting those childrens’ autism, let alone with navigating the seemingly hostile NDIS bureaucracy. She needs help just to apply for help, and help to access the help is promised just as soon as she successfully accesses the help. And round and round she goes. She would very much like to make a submission to this Committee, but she fears that even if there was enough time left to do so, she is already far beyond her resources. She is looking after several children, while attempting to get diagnoses and assistance from an organisation which almost seems to be deliberately keeping her from being able to access them. She is trapped in a middle place. If she had been severely affected, with moderate or severe communication difficulties, even without an intellectual disability, then she would have had people to advocate for her, and to do the bulk of the work to get assistance for her. But she is highly articulate, and very intelligent, and so the disabilities she does have – in understanding less than direct speech, in executive dysfunction, in social anxiety – become disabilities not just in everyday life for herself, but in her efforts to be an advocate for her children. She is not just disabled, her disabilities are actively preventing her from receiving assistance to mitigate the effects of her disabilities. She is also concerned that if she were to report directly about her experiences with the NDIS, that this would be held against her in their deliberations. She may well be unnecessarily paranoid in this regard, but her experience so far is that anything which can be held against her will be, and she cannot afford to take the chance.

Postscript: a few days before the deadline for submissions to this Committee, she discovered that she has been accepted onto the NDIS. All she had to do was drive herself to the very limits of endurance to do it.

Terms of Reference I — the development of a National Autism Strategy and its interaction with the next phase of the National Disability Strategy;

On what shouldn’t need to be said

I have one recommendation here, which I cannot stress strongly enough: Include Autists at all stages of planning and implementation.

Nothing about us without us.

To plan an autism strategy without including autists is like planning a sexual equality strategy, and not including women.

Terms of Reference J — The adequacy of funding for research into autism;

I am not privy to the amount of funding, or to the priorities of research centers like the Olga Tennison Autism Research Center (OTARC) 28 at La Trobe University or the Autism CRC, or the University of NSW.

28 https://www.latrobe.edu.au/otarc I am a participant in the Australian Longitudinal Study of Autistic Adults, which in its paper on the cohort profile 29 makes many of the same points I make elsewhere in this submission. I will note that another of the points made in the introduction of that paper is that there needs to be much more research into the wellbeing and outcomes of adult autists.

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;

On advocacy and consultation

Does the government consult with ASAN 30 on these matters? Beyond representations from self-advocacy groups like ASAN, or from individual autists on an ad-hoc basis when they happen to accidentally discover there’s something like a Senate Select Committee, in process, and have the capacity to be able to make a submission, there is no mechanism for representation, self- or otherwise for autistic people to government, and little to no support in the wider world. For better or worse, it would seem that it’s every autist, alone against the world. At least, that’s certainly how it feels most of the time. If some sort of representative or consultative body is formed, please let me be the first to volunteer to be on it.

29 Arnold S, Foley K, Hwang YI, et al., Cohort profile: the Australian Longitudinal Study of Adults with Autism (ALSAA) BMJ Open 2019;9:e030798. doi: 10.1136/bmjopen-2019-030798

30 The Autistic Self Advocacy Network for Australia and New Zealand ( http://www.asan-au.org/ ), which was founded on the model of and associated with ASAN ( https://autisticadvocacy.org/ ), founded in the USA in 2006 by Ari Ne'eman and Scott Michael Robertson. Terms of Reference L — Any bill that relates to matters within the scope of this inquiry that is referred to this committee; and

I know of no such bills, nor am I qualified to comment on them if I did.

Terms of Reference M — any other related matters.

On the possibility of an adequate summary

This subject is much, much bigger and more complex than can be adequately addressed in even such a bloated submission as this one. Books can be written on the complexities and subtleties and contradictions of autistic life. Books have been written: as fiction 31 , as reference32 , as biography 33 and autobiography 34 . And books will continue to be written. The Autistic condition is a human condition, and that means it’s complex and hard to summarise. And, as the old saying goes, “if you’ve met one person with autism, you’ve met one person with autism”. If you want to see some of the depth and breadth of the autistic experience, I would recommend going to the Autistics Speaking Day website 35 , and going back over the years of submissions, describing facets and shards of what it’s like to be autistic. I can’t speak for all autists, because I don’t know them all. But if I can speak on the behalf of those who can’t communicate adequately well for themselves, then it is my honour and my duty to do so, lest they be left with no voice at all. Or, worse, people speaking over them, and claiming to do so in their name.

If there is one piece of advice I can give the Committee, it is this:

31 E.g., Mark Haddon, The Curious Incident of the Dog in the Night-Time ; Graeme Simsion, The Rosie Project and sequels.

32 E.g., Dr Tony Attwood, The Complete Guide to Asperger's Syndrome ; and Sean Barrin, The Unwritten of Social Relationships

33 E.g., Oliver Sacks, An Anthropologist on Mars ;

34 E.g., Temple Grandin, Thinking in Pictures ; , Look Me in the Eye.

35 https://autisticsspeakingday.blogspot.com/ This issue is bigger than can be adequately addressed in one submission, or by one Committee. It will require an extended process, iterative and inclusive, which actively seeks input from the community and listens to it. Which includes autistic people at its core as active members of the process. And which is always learning and growing from experience.

Thank you for giving me this opportunity, and for listening.

Yours, David Cameron Staples.