Nothing about us without us – different not less

Jeanette Purkis

I think we’ve developed a ‘patchwork’ sort of world in relation to Autism.

By Jeanette Purkis

I’ve been a diagnosed Autistic person for more than half my life. Here are 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 I would be a nerdy geek that everyone would bully 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 a psychiatric hospital. The chief doctor 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, yet 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 with an employment service provider who 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 worked at were within the service itself.

In 2004, I was asked to enroll 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 … destiny. Donna became central in my Autism world and a 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. 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. My life changed beyond recognition. I went to a lot of autism events. I noticed the biggest disconnect was between what I experienced and what the non-autistic ‘experts’ were saying about people on the spectrum. Many parents I met seemed to act like they’d 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 brightly-colored, shiny jewelry. In terms of inclusion for Autistic people – or conference speakers at least – things seemed to be changing a little. I was often the ‘color 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.

In 2013, I was asked to give a talk for TEDX Canberra. In 2014 my book on employment for Autistic teens came out. This is when I discovered the Autism world properly. I found out there was a mentoring organization mostly run by Autistic people called the ICAN Network. There were lots of researchers who seemed genuinely interested in Autistic perspectives. The concept of ‘Neurodiversity’ was floating around. I liked it.

Jeanette Purkis Temple Grandin Tim Sharp
Jeanette with Temple Grandin and artist Tim Sharp

Now a couple of years later I think we are in an odd place. Almost everyone – whether they identify as part of our community 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’m somewhere within their number.

Autism organizations 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 see (and sometimes contribute to) articles in mainstream publications about the value of Autistic employees. Yet there is an employment participation rate for Autistic Australians of only 35 percent. 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 resulted in their own awful ‘movement.’ In some countries ‘treatments’ which purport to ‘cure’ Autism but are dangerous and harmful to kids are touted. Abuse and bullying are rife – often in settings which are supposed to be supportive.

I think we’ve developed a ‘patchwork’ sort of world in relation to Autism. Although in my 22 years as being a diagnosed Autistic woman things have improved in regard to Neurodiversity and respect, there is this subculture of ‘cures,’ anti-vax and charlatanism. There is still a very strong whiff of tokenism and disrespect in some organizations 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 the decision-making process. 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.”


Jeanette Purkis is an author, public servant and passionate advocate for Autistic people and their families. She is the author of ‘Finding a Different Kind of Normal: Misadventures with Asperger Syndrome’ – an autobiography, and ‘The Wonderful World of Work: A Workbook for Asperteens‘- an activity book about employment for teens on the Autism spectrum. Jeanette has also contributed to other books, journals, blogs and websites. Jeanette has a diagnosis of Asperger Syndrome and atypical schizophrenia.

This blog was originally published on Jeanette’s website under the title “Advocacy and Autism: The Road from Then to Now”

You may also like by Jeanette Purkis:

Autism and Mental Health Strategies for those with a Dual Diagnosis

The Employment Shift: Tips for Autistics

One reply on “Nothing about us without us – different not less”
  1. says: Wendy H.

    I have a wonderfully creative 26-year-old autistic daughter who I love more than anything. She sees life in positive and unique ways and lightens our lives. We can totally relate to your journey and find your view of the current state of things to be very accurate. Thanks for sharing.

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