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Autistic women, do we even exist?

27/2/2016

12 Comments

 
Autism and women seems to be one of the bright new shiny things (that actually if you were looking were always there) currently being picked up by the media.  The plus side of this is that we (autistic women) are becoming more visible in our various guises.  This enables more women to recognise their autism, and parents of autistic girls to consider the possibility that perhaps their daughter might be autistic rather than deliberately difficult and awkward.  
It is sometimes suggested there should be special criteria for diagnosing women.  I disagree with this as I would argue that the underlying traits of autism are the same they just manifest differently in different people (and sex is a major difference between people).  Think about colour mixing, if you add yellow to blue you get green, which is very different to the purple you get if you add yellow to red.  However the yellow is still yellow, you just have to be aware that it looks different depending on how much is present and what colour it is being mixed with.

I don’t think medical practitioners should be the gatekeepers for autism any more than they should be the gatekeepers of sexuality. (I believe autism like homosexuality should be removed from diagnostic manuals and re categorised as a naturally occurring part of human diversity.)  Like homosexuality autism can only now be identified by observing behaviour, and this is necessarily contextual and dependant on the knowledge and sensitivity of the observer. Diagnostians have been known to refuse a diagnosis of autism on various spurious grounds my own list includes “he/she looked me in the eye”  (this to me is like telling someone they are not gay because they have flirted with someone of the opposite sex – it demonstrates a very restrictive and stereotyped understanding of the condition as well as ignoring the fact that people are able to behave in ways that do not reflect their inner feelings). My colleague at AutAngel, David Mery found a more extensive list gathered on the Everyday Aspie blog.  

However we are where we are, and currently medical practitioners are the people authorised to diagnose autism, and however much self-diagnosis with peer confirmation might be accepted within the autistic community many people only feel they are “really” have a right to claim their autistic identity after the benedictionof an official diagnosis.
So while autistic women are getting some airing in the media the idea (I would say myth) that there are more autistic men than women does not seem to be challenged, the posited ratio just seems to move a little.  I believe that there are as many autistic women as men, I base this belief in observing the world around me and the people I come across both those identifying and/or diagnosed as autistic and others.  I realise that people can brandish statistics at me that demonstrate I am wrong, but this begs the question of the validity of these statistics (just like you can find a quote in the bible supporting most views, you can gather statistics to show most anything) as they won’t include undiagnosed women and therefore could just be showing up the bias of diagnosticians. Not to mention the fact that due to the low profile of autistic women until recently women were very unlikely to even present for diagnosis.

Interestingly if you are a woman wondering if you might be autistic I think there are better books available to support you in examining this than there are for men in this position.  I have always recommended Women from Another Planet, as it is written by autistic women and unlike individual autobiographies, offers many different perspectives on what autistic lives can look like. This was published in 2003 so these women featured in it are real ground breakers in terms of being aware of their autism and willing and able to share their stories.   It is idiosyncratically organised (as befits something the product of a group of early autistic adaptors working together) and densely packed with a rich variety of experiences and viewpoints.

A more recent book on the subject is Women and Girls with Autism Spectrum Disorder by Sarah Hendrickx. This is organised in a more immediately accessible and convenient manner as well as giving diverse women the opportunity to speak to us. Sarah’s own voice comes through with engaging honesty and succeeds in addressing difficult topics with the consideration they deserve while maintaining her light humorous touch.  With the small caveat that Sarah uses the term “women with autism” where I would prefer “autistic women”  I would unreservedly recommend this book and hope that it will help increase the awareness that women are just as likely to be autistic as men. 

In fact it seems to me that there are many couples where both partners are autistic but only the man is diagnosed - because autism is so stigmatised it can be hard to address this but I think that decreasing stigma, and increasing awareness of autistic women will be helpful to these couples and society generally.
12 Comments

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    Autistic women, do we even exist?

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