2 X chromosomes mark the spot
Salutations ladies and gentlemen! I hope all has been well, my week has been intense. I had to help setup my mother's surprise 50th birthday party and I went to the Sci-Fi Film Festival. But enough about me, let's get on with the show. This week I won't be covering females on the spectrum and I will tell you why. As a man I feel that couldn't provide an accurate representative of how females on the spectrum are being treated. So I have asked the brilliant Jeanette Purkis to write this weeks' blog. She is a fantastic advocate who has even given TED talks! With out further ado, here is a little bit about Jeanette.
Jeanette Purkis is the autistic author of ‘Finding a Different Kind of Normal: Misadventures with Asperger Syndrome’ – an autobiography, and ‘The Wonderful World of Work: A Workbook for Asperteens.’ Jeanette works full-time in Government administration. She gives talks about living well with autism in a variety of forums, including autism conferences and TEDx.
The agenda around gender - women and the autism spectrum by Jeanette Purkis
I spent my childhood and adolescence being told I was different from others - my peers, my family, the world in general. One school of ‘Jeanette is different’ was positive: I was gifted, I wrote poetry, I understood concepts which many adults had yet to master. Sadly my difference did not only result in positive feedback. I was also a target for every bully and sexual predator I came across. By the time I had finished school I had minimal self-esteem. I didn’t value myself and I felt there was something fundamentally wrong with me. I longed to fit into the world my schoolmates inhabited, but I had no idea just how to do that.
I left home at 17 and got a job but before long I was receiving welfare payments and was involved with an older man who was a criminal. When I gained my Asperger’s diagnosis I was in prison. Apparently my diagnosis was quite clear cut - I was told that I fulfilled all the DSM IV criteria for Autism. This was in 1994. The Asperger’s diagnosis was a relatively new thing in the English speaking world. My parents were told that Asperger’s was very rare in women and that for every twenty boys with Asperger’s there was but one girl. At that point, the psychiatric profession did not have a great awareness of autism in boys, let alone in girls. So when I found myself in a psychiatric hospital in 1996, the rather arrogant chief psychiatrist flatly refused to accept that I had autism. Instead, I was told that I had borderline personality disorder. A diagnosis of this condition led to a lot of judgement and prejudice from staff in every hospital and mental health service I encountered over the next few years. I also doubted my Asperger’s diagnosis and when I met men or boys on the autism spectrum, I saw all the differences between them and me, rather than points of commonality. To make matters worse, the arrogant chief psychiatrist seemed to pop up wherever I went. I eventually started seeing a different psychiatrist but I still had a lot of doubt around my diagnosis.
After a while I wrote a book about my life as an undiagnosed - and misdiagnosed - Aspergirl. I soon discovered that many of the other autistic authors were women: Donna Williams, Temple Grandin, Liane Holiday-Willey and Dawn Prince-Hughes to name a few. Despite meeting other women on the spectrum, I still doubted my diagnosis. Maybe I didn’t have autism? Maybe I was just a manipulative liar wanting sympathy (a message which I had received from a number of people in the world of mental illness). As time when on, I started speaking at conferences about autism. I was invited to speak at an event in Brisbane which was aimed at women and girls on the autism spectrum. I gave my talk and looked out at a room full of hundreds of other women who turned out to be similar to me in a lot of ways. The second day of the conference focussed on participation and discussion among women on the spectrum. I then knew that I was home - as each woman told her story, I could relate. By the time I flew back home to Canberra I knew that without a doubt I was an autistic person: and an autistic woman at that. I had finally found my place to belong. I have not looked back ever since. I now have a great number of Asperwomen friends. I facilitate a group for women on the spectrum and I am firmly within the camp of autistic (female) self-advocacy.
Some thoughts on women and girls on the autism spectrum
- girls with autism can hide their ‘differences’ tin order to fit in. This can mean we do not get diagnosed until we are older. It also means that parents can see that things are difficult for their daughters but schools do not pick it up as Aspergirls are spending all their energy fitting in at school and only show stress and meltdowns at home.
- Girls on the spectrum have some general similarities with boys on the spectrum but there are often differences, including in areas such as social skills and the topics of passionate interests. Aspergirls often have a deep and intuitive connection to the natural world, particularly with animals and may be focussed on creative output such as art, music or poetry,
- Girls on the autism spectrum often have low self-esteem often as a result of repeated bullying or abuse. This can lead to mental health issues and self-harm, even at young ages. It is crucial to value and build self-respect and self-worth in girls and women - and boys and men for that matter - who are on the spectrum.
- Girls and women on the spectrum can be easy prey to abusers and bullies. We often seem very innocent and naive. Sadly not everyone who comes across someone who appears vulnerable responds with support and respect. Many people see that vulnerability as an opportunity to exploit and victimise. Teaching girls on the spectrum self-protection skills and self-confidence is vital, as well as raising awareness and combatting violence and abuse in society.
- Girls and women on the spectrum are often highly empathetic and intuitive.
- It is important to understand that autism is an individual condition. ‘If you have met one person with autism you have met one person with autism’. Girls and women on the spectrum are as varied and different as the rest of the human race. Despite some common experiences there is no specific ‘type’
- Women and girls with autism spectrum conditions may be undiagnosed and misdiagnosed, especially with things like schizophrenia and borderline personality disorder. This can result in some horrific invalidation and even abuse in the psychiatric world. A correct and early diagnosis of autism spectrum condition or Asperger’s is best. It is important for the medical profession, guided (or goaded) by those advocates amongst our number, to gain understanding about autism and how it manifests in women and girls.
- Because of the general lack of awareness of how autism ‘works’ in women, a lot of adult Asperwomen are self-diagnosed. There are a number of psychologists and clinicians who specialise in diagnosing and working with adult women on the spectrum. These include Hearts and Minds Clinic and clinical psychologist and author Tania Marshall. Aspect also has specialist psychologists on staff for diagnosis.
A couple of web-based resources around self-advocacy for women on the spectrum include:
Autism Women Matter - www.autismwomenmatter.com
Autism Women’s Network - http://autismwomensnetwork.org
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