I am an Autistic woman. I was diagnosed with Asperger syndrome in 1994, a time when few people outside of a select group of mental health professionals knew anything about the more ‘Aspie’ part of the Autism spectrum.
When I got my diagnosis, I was told that being a woman with Autism was really rare. Most people on the Autism spectrum were boys. They lacked empathy, they did’t understand nonverbal cues, they couldn’t hold conversations, they were kind of flawed geniuses and liked maths and physics. Oh, and they all liked trains apparently, or trams and buses if they were a bit atypical. Of all these attributes, none of them involved people with Asperger’s being girls. Girls on the spectrum were – according to psychiatric wisdom – an anomaly. So I was an anomaly amongst anomalies and nobody knew anything about how to make my life better. I didn’t take this news very well.
As I progressed through life in a somewhat haphazard manner, I developed a mental illness. I found myself in a hospital in country Victoria. The chief psychiatrist told my parents that I couldn’t have Autism as I was sensitive, and didn’t like maths or trains and most of all, I didn’t fit the limited number of Aspies this man had treated, all of whom were boys. I gained a diagnosis of Borderline Personality Disorder – apparently a very common misdiagnosis for Asperwomen, and spent the next few years being told how dysregulated my emotions were and what a nasty manipulative little attention-seeking borderline I was. Not nice.
Eventually, I came to terms with my Asperger’s diagnosis. I saw a psychiatrist who specialised in treating people on the Autism spectrum. I got in touch with Autism Victoria (now known as Amaze) and borrowed books and videos from their library. I came across author and advocate Wenn Lawson. authors Donna Williams and Liane Holliday-Willey and of course the amazing Temple Grandin. Apparently I was in good company. I made a valiant attempt to join the ranks of notable Auties by writing an autobiography, but I still hadn’t met a lot of women on the spectrum. I had the occasional twinge of doubt that maybe to be Autistic I needed to like maths or trains or something.
A couple of years later I was asked to speak at a conference about women and girls on the Autism spectrum. The first day was your standard Autism conference: A bunch of speakers – including me – standing up and talking about what we were experts in to a group of mostly clinicians with a smattering of Autistic people. But the second day of the conference was for women on the spectrum only. I was in a huge room filled with other spectrumites…girl spectrumites at that. I have not doubted my membership of the Autism club ever since. I felt like I was in a room full of people just like me. It was wonderful!
I now belong to a sort of network of Autistic women – there’s quite a few of us. We’re all advocates and we work to raise awareness of Autism among women. I have discovered that women on the Autism spectrum are generally a little bit different to our brothers in the Autie club. There are still issues for some of us in regard to getting a diagnosis or even if we have one, of getting professionals to understand out Aspiness is there, albeit in a female sense. Things have certainly improved since my days in the 1990s with nobody believing a sensitive, literary, artsy girl could be on the spectrum, but there is still a ways to go.
I am involved with a great advocacy organisation called Autism Women Matter which works on these sorts of things. Here’s their website: http://www.autismwomenmatter.com – check it out. It’s good. My friend Tania Marshall has also written a great book on girls and Autism called ‘I am ASpiengirl’ –www.aspiengirl.com – which I strongly recommend.
Being an Asperwoman is a huge part of my identity thee days. I’m so glad I never listened to the Dr Doubtfuls and instead sought out a world where I fit in. I really hope that others can find the same sense of belonging and inclusion as I have.
Jeanette hard at work doing some advocacy (and loving it)