To the Select Committee of Autism,
I am an adult female diagnosed with Autism without an intellectual disability. I was first diagnosed when I was 27 years old back in 2013. I have had four Autism assessments from different professionals and organisations between 2013 and 2020, all of which have diagnosed me with Autism. All assessments have used different tools to determine whether I had Autism or not. The last assessment was closest to the considerations around Gender outlined in the National Guideline by the Autism CRC; in that they incorporated the CAT-Q, a self-report measure of social camouflaging behaviors in Autistic adults. The only Autism assessment to provide me with a Level of Autism, Level 2, was my most recent multidisciplinary assessment.
The Autism CRC’s, A National Guideline for the Assessment and Diagnosis of Autism Spectrum Disorder in Australia (downloadable from their website), does a commendable job of outlining what professionals need to consider across Gender, Cultural and Linguistically Diverse Backgrounds, and Complex Mental Health issues. I fall into all three categories: I am a female Autistic (plus LGBTQIA+), my parents first language is not English, and I battled through complex mental health issues on my own. It is important that these considerations become a fundamental part of Autism diagnostic processes within Australia because, even now, it is not so.
The inconsistency in diagnostic processes is frustrating because it is a costly process with no guarantee of return on investment i.e. provision of supports. Speaking of my own experience, I have had to spend thousands of dollars, which I did not receive much recompense for, to try to prove that I require support to develop my skills around social engagement, employability, and other areas related to Autism. Even now, it is an ongoing process. Prior to NDIS (i.e. 2016 in most areas), obtaining funded supports was not really possible for those who received a late-diagnosis of Autism, unless you had very complex mental health issues and were under the care of mainstream mental health. A common assumption held by people, even now, is that you must be okay to have gotten so far and that your Autism must not be that bad. Another assumption is that you do not understand ‘what real Autism is like’ because you are high-functioning; this view-point often comes from parents of children with Autism with an intellectual disability. However, these viewpoints are rather obtuse. All Autistics will have ongoing issues with things like social communication, emotion regulation, executive functioning, and adaptive functioning. If individuals didn’t have these core characteristics of Autism, they would not be diagnosed with Autism in the first place. The point of Autism intervention is to help manage the associated symptoms of Autism, as there is no cure. It is a lifelong neurological difference. This is why, in the Autism community, there is a strong push for Autism Acceptance.
I have spent tens of thousands of dollars to try to remediate my Autism, before and after diagnosis, in a variety of ways. For example, I studied Social Work and Psychology to try to help myself through the vicarious process of helping others. I have worked on my mental health issues through professional development, including trauma resolution strategies (i.e. resolving emotional dysregulation). Nevertheless, in spite of my effort, I am still considered a Level 2 Autistic. The skills I have developed to function in the professional world does not translate well to the social world. Also, I cannot do away with my sensory issues. I am hypersensitive to sensory stimuli and I have Spatial Auditory Processing Disorder as diagnosed by an Audiologist, a condition which is not recognised by the NDIA although it is a
cooccurrence in Autism. The world, including my workplace, was not built for me and does not want to accommodate me even when I ask for support. I was told this directly by upper management i.e. I have to make myself fit into the workplace. I have to put in 110% effort to be on par with my peers because no one will meet me halfway. In the long-term, this pressure to over-perform tends to lead to burn-out. Hence why, anecdotally, a common complaint among Autistic adults is chronic fatigue and other stressor-based disorders. If more funding could be diverted into evidenced-based strategies to manage and/or resolve dysregulation, then that would make things easier for a lot of people. Once your central nervous system goes out of whack, it can be a very hard and long path to get it back to homeostasis or something close to it. I digress.
An added complication to the diagnostic process for adults is the requirement to engage with a psychiatrist to get their stamp of approval on your Autism assessment. Psychiatrists are hit-and-miss, and the ones with a higher degree of Autism knowledge have very long wait lists e.g. 2021 and beyond. What is more, some psychiatrists seem to think that their 50 minute initial engagement with you is enough to supersede an Autism assessment, which takes at least 5 hours of face-to-face time, from allied health professionals whose sole focus on a day-to-day basis is Autism. For example, the last psychiatrist I saw did not even know there were levels of Autism now (this change occurred back in May 2013), and her understanding of Autism was limited to information from 30-40 years ago! She actually spent a good part of 20 minutes telling me that I was trying to be a square peg trying to fit in a round hole, and that I should have pursued a career in something like Engineering because it does not really require soft skills i.e. my social difficulties were the result of ‘intelligence’, and that I had Schizoid traits. Little did she know, I am actually quite terrible at mathematics. It might be the way my brain is wired or how I was taught, but I always failed mathematics including general mathematics. I was also a poor performer at Chemistry; I had a teacher scream at me once in High-School for making her look bad, due to me failing an exam (because it brings down the class average). So, Engineering was not a realistic option for me. It may be an option for other Autistics whose strength lies in that area. In the end, I am left with little choice but to engage in a career path that require strong soft-skills to pay my bills, unless everyone would prefer for me to sit on the disability support pension. My point here is that there needs to be a standard for who can diagnose Autism i.e. a clearer level of educational attainment specific to Autism.
I work in a job which allows me to read Autism assessments and reports on a daily basis. Anecdotally, I can say that there is great variance in how Autism is assessed in Australia. A lot of Psychiatrists and Paediatricians, in their reports, do not specify what assessment tools they have used to diagnose Autism in a person. In fact, some Paediatricians have disregarded the findings of allied health professionals. For example, I read two Autism assessments performed by two different clinical psychologists from different time-points, who both agreed that this particular child had Autism Level 1, however, the Paediatrician ended up giving this child a Level 2 diagnosis without justifying the whys of it. I have also, anecdotally, known people who have shopped around to get a Level 2 diagnosis for their child because the original diagnosis was a Level 1. Because it is known, through online and offline discussion, that the NDIA usually rejects access for those with a Level 1 Autism diagnosis. In saying this, you could also argue for the point of Autism not being a stagnant thing, with levels of Autism fluctuating across the lifespan in response to life events e.g. going up in response to an increase in mental health issues, life transitions, etc., and then going down in response to skills acquisition.
On the topic of parents, Autistic parents and parents of children with Autism seem to
perpetually struggle with the raising of their children. For Autistics (diagnosed, undiagnosed and late diagnosed), this is partly tied to their lack of comprehension about what they are getting themselves into when they decide to have children. It is widely known that Autistics tend to have a higher chance of having children with Autism. So, they then have to deal with the impact of their Autism and their child’s/children’s Autism. This then leads to the Autistic parent struggling and reaching out for support. For Neurotypical parents of Autistic children, it is likely the difference to their own neurology is what they struggle with (i.e. double empathy problem). Anecdotally, I know that both groups have children and teenagers who seem to lack basic life skills (e.g. catching the bus, cleaning their room, preparing a meal etc.). I would like to point out here that there is a difference between those who have and do not have an intellectual disability. I am speaking more for those without an intellectual disability. I cannot really offer a solution to this issue and can only bring light to it, as I do not have children myself and my parents both had their own issues. In fact, I was a parentified Autistic child, having to help my mother out with basic things like phone-calls, forms, resolving points of crisis, etc. My dad died when I was ten, and there is a whole other issue surrounding that. I did not have the option of falling back on my parents for support in a number of areas. I just had to do things. So, all I can say is that parents, both Autistic and Neurotypical, also require support to develop their personal capacities in response to the ‘demands’ of having an Autistic child.
This brings me to my final point, the need for equitable supports for all Autistics. It is my understanding that the Autism CRC has developed a best practice approach for supporting Autistic individuals that was commissioned by the NDIA. It would be beneficial to release some of the key findings around evidence-based practice approaches to the public, so tax payer funding is not wasted on things that are not really needed, including the cattle-pronged approach to developing independence. It may also mean that a larger number of Autistics can be supported, which is the most important thing. No one should be left out. The NDIA, after all, has provided access to 113,470 Autistics, although Australia is reported to have well over 200,000 Autistic individuals.