I have been a diagnosed Autistic person for more than half my life. This post is some observations of where we were, where we are now and where we might be headed in terms of respect and Neurodiversity and other good things.
When I was diagnosed in 1994, literally nobody i knew had heard of ‘Asperger Syndrome.’ I thought it confirmed that I would be a nerdy geek that everyone would bully me for the rest of my days. I was understandably more than a little reluctant to embrace my new ‘label.’ My mum was told that Asperger’s was incredibly rare and about one in 25 people diagnosed with Asperger’s were women. Apparently i was incapable of love, empathy and thoughtfulness and I didn’t like hugs.
Fast forward a couple of years to 1996. I had acquired a mental illness diagnosis and was in the psychiatric hospital. The chief doctor there had come across some young men on the Autism spectrum. They were bookish and conservative. I was an extroverted, purple-haired artist who smoked weed. Plus my Asperger’s diagnosis had been given by a clinical psychologist rather than a psychiatrist (I will not infer from this, but I will mention the psychologist was a young woman who had what were unconventional ideas a the time – she was vindicated by the weight of reality catching up with most of the arrogant male psychiatrists and is now very much a respected clinician. Yay for the young women with unconventional ideas!!). The upshot of this was that my Asperger;s diagnosis was not taken into account and I was misdiagnosed with borderline personality disorder.
A few years later I signed up wiht an employment service provider which worked with Autistic people. The predominant view at this service seemed to be that employment was A Bad Thing for Autistic people. Most of the jobs clients of the service got were within the service itself.
In 2004 I was asked to enrol in a teaching and facilitation course with a bunch of other Autistic adults. Once we had completed the course we would be able to give talks at schools. That was not the best thing I got form the course though, One of the participants was bestselling Autistic author Donna Williams – I still can’t imagine why she was there because it wasn’t like she needed assistance to do public speaking! In terms of my life though, Donna’s presence was, well if you believe in these things, I think it was destiny. Dona became my Autism world and literary mentor. She told me I should write my life story. A few people had suggested i do this but when a (at that time) nine times published author thought I should write a book, I thought it was probably time to do so.
The book was published of course. I don’t think I would be here writing this blog if it hadn’t been. The book was accepted by Donna’s publisher, Jessica Kingsley Publishers, and my life changed beyond recognition. I went to a lot of autism events. What I noticed most was the disconnect between what I experienced and what the non-autistic ‘experts’ said about people on the spectrum. Also a lot of parents I met seemed to act like that had been dealt a dud hand in the offspring lottery – sadly often in front of their children. I felt defensive and uncomfortable at these events.
My life took a major turn in 2007 when I moved to Canberra to be a Government official, middle class person and owner of lots of bright coloured, shiny jewellery In terms of inclusion for Autistic people – or conference speakers at least -things seemed to be changing a little. I was often the ‘colour and light’ at Autism events. They would get the ‘serious clinician person’ to do the whole day and then Jeanette would get fifteen minutes to relate something form my lifted experience. At the time I thought all this was pretty cool though.
In 2013 I was asked to give a talk for TEDx Canberra and then in 2014 my book on employment for Autistic teens came out. I discovered the Autism world properly then. I found out there was a mentoring organisation mostly run by Autistic people called the I CAN Network, there were lots of researchers who seemed genuinely interested in Autistic perspectives. The concept of ‘Neurodiversity’ was floating around. I liked it.
A couple of years later and we are in an odd place I think. Almost everyone – whether they identify as part of our community of or not – has had some exposure to ideas around Autism – media articles, family members or friends on the spectrum, seeing Autistic celebrities or even TV characters like Sheldon Cooper in the Big Bang Theory. In the actual Autism community, there are a bunch of passionate activists and advocates. I like to imagine I am somewhere within their number. Autism organisations led primarily by non-autistic people are increasingly being taken along with attitudes around Neurodiversity and inclusion – with varying degrees of success and commitment. In the wider world, I keep seeing (and sometimes contributing to) articles in mainstream publications about the value of Autistic employees but there is an employment participation rate for Autistic Australians of only 35 per cent. One of this year’s bestselling books worldwide is the excellent history of Autism and Neurodiversity, Neurotribes written by non-autistic journalist (and very awesome guy) Steve Silberman. Damaging nonsense about ‘Autism epidemics’ and vaccines and causation – while understandably very unpopular in the Autistic community – have somehow resulted in their own awful ‘movement’. In some countries ‘treatments’ which purport to ‘cure’ Autism but are actually dangerous and harmful to kids are sold. Abuse and bullying are rife – often in settings which are supposed to be supportive.
There is a term used by politicians which is a ‘patchwork economy’. I think we have a ‘patchwork’ sort of world in relation to Autism. I do think that in my 22 years as being a diagnosed Autistic woman things have improved a lot. But alongside Neurodiversity and respect, there is this subculture of ‘cures’ and anti-vax and charlatanism. There is still a very strong whiff of tokenism and disrespect in some organisations which are meant to be assisting us but don’t seem to want us to be at the table making decisions. And decisions on Autistic people really should have Autistic people largely involved – and listened to – in making the decision. So we are definitely not there yet, but I am beginning to get some idea of what ‘there’ looks like. Just finishing off with some oft quoted statements – and for good reason. If these principles were adhered to, my life would be a lot easier as I imagine would the lives of a lot of my Autistic peers and colleagues:
“Nothing about us without us”
“Different, not less”.
4 thoughts on “Activism and advocacy – The road from then to now ”
I lived with a diagnosis of bipolar II and a whole bunch of seriously harmful medications for amost 15 years before a good (female) psychologist stated that she saw no evidence of this and insisted that I look into an assessment for Asperger’s. She was right. Now, my life makes a whole lot more sense. But not before a lot of damage and stigma, unfortunately. Thanks for your post, I can relate to a lot of what you said…including the purple hair! 😉
I was only diagnosed about a yearish, maybe a year and a half ago (time is…not my thing). In that time I have learned so much about the competing “theories,” of autism and allism, advocacy and self-advocacy, etc. I think you summed it up really well.
I also think tumblr posts have really helped me. Listening to other autistic people talk about their experiences has been one of the most powerful things I’ve ever heard, and has helped a LOT in figuring out how to express what I feel, and how to make allistic people listen to us.
I think that’s part of why the patchwork world.
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