Autism Is A Feminist Issue

06/04/2017 08:31
Laura James

When you think of autism your mind will likely conjure up that geeky guy from IT or a little boy obsessively lining up his toy trains. It's almost impossible not to succumb to these stereotypes because they are the references we most often see.

There are, though, many women and girls out there struggling to understand why they are different and trying hard to find their place in the world.

Like me, many will have been bounced from doctor to doctor and many may have been written off as neurotic or attention-seeking. Or, perhaps worse, misdiagnosed and treated for a condition they do not have. Often autism in women is mistaken for a mental health issue, such as Borderline Personality Disorder or Bipolar Disorder.

Hans Asperger - who, in 1944, first described the syndrome named after him - originally believed that no women or girls were affected, although clinical evidence later caused him to revise this thinking.

In the early 1980s, a research study into gender ratios in childhood autism found that among those with so-called high-functioning autism or Asperger's syndrome there were as many as 15 times more males than females.

A 2012 study by the National Autistic Society (NAS) found that only 8% of girls with Apserger's syndrome were diagnosed before the age of six, compared to 25% of boys. And in 2015, the ratio of men to women using NAS adult services was approximately 3:1. In those using NAS schools it was approximately 5:1.

The reasons for the under-representation of females with autism are many and complex. Women and girls often become adept at masking their traits. While boys seem more able to do their own thing, we put all our energy into fitting in. It comes with a high price tag - living a lie can be exhausting and overwhelming. We try to control our meltdowns, turning everything inwards. While boys may explode, we implode and the cost to our mental wellbeing can be high.

The diagnostic criteria for Apserger's were based on observations of the behaviour of only men and boys, which is extraordinary when you think about it. To try to compare the behaviour of a women seeking a diagnosis is an exercise doomed to failure.

Girls can more often feel the compulsion to interact socially, leading to them mimicking the behaviour of the girls around them. Research indicates that many will engage in more imaginative play than is the case with boys. They may also escape more often into an imagined world or lose themselves in fiction, as I did with the books of Jilly Cooper, using her books as a guide to life!

Finally, the special interests of girls with autism may be similar to those of neurotypical girls, meaning they may not be picked up as clearly. Many little girls love horses, but an Aspie girl might think about them every waking moment if they are among her special interests.

If, like me, there is a physical condition co-existing with autism, misdiagnoses can become even more complicated. I have Ehlers Danlos Syndrome (EDS), a genetic connective tissue disorder often found alongside autism. Research into this apparent link is in its infancy, but the dots are starting to be joined.

Social media has been instrumental in helping many of us find out about our autism. Online, we have been lucky enough to come across other women who share the same struggles and the same gifts - and when this happens it can be a remarkable moment. Suddenly, after years of feeling alone and adrift in the world, we discover an entire community waiting to welcome, support and sustain us.

I was in my mid-40s when I finally received my autism diagnosis. Initially, the feelings were of relief and a vindication. Everything and nothing had changed in that moment. After decades struggling to understand myself, suddenly I had the answers. My life, however, remained the same. I still had to go to work every day, to pay the bills, care for my children, cook supper.

To try to process the myriad complicated feelings I began writing, charting the year after my diagnosis, which became my book. The title, Odd Girl Out, describes perfectly how I feel about my place in the world.

I am lucky to be in a solid marriage of 20-plus years. Many autistic women struggle with this. We tend to be trusting and take things at face value. While our neurotypical sisters are often adept at spotting predatory men or those who don't have their best interests at heart, we are often slower on the uptake.

I am hopeful, though, for the next generation of girls growing up now. Female autism is getting more airtime. Sesame Street's latest character, Julia, is an autistic girl; books like mine and Rachael Lucas's amazing young adult novel, The State of Grace, are starting conversations around female autism; and the NAS's brilliant new TMI film, Make it Stop, features Holly, a 12-year-old autistic girl.

Steve Silberman, author of Neurotribes, has been quoted as saying that autistic adults are "fighting the first civil rights battle of the 21st century". I am hopeful we will see women at the forefront of this fight.

Laura's new book, Odd Girl Out, publish by Bluebird, is available from today.

laura james

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