When I tell people that I have Asperger’s Syndrome, I get a variety of responses. Some of the less impressive ones have been: “But you look alright at the moment,” and “I know I’m not a doctor, but I don’t think you have got it.” These have been from people who should know better – people who are, by profession, linked to the world of autism spectrum conditions.
It is perhaps not surprising though, given that almost all of the research, literature and diagnostic criteria have evolved from a starting point in the 1940s when Hans Asperger first identified the condition through studying groups that consisted solely of young boys. He noticed these children were all high-functioning but had difficulties with social communication and displayed repetitive behaviours.
Most people will recognise the same stereotype that is still perpetuated by the media – The Big Bang Theory’s Sheldon Cooper or Coronation Street’s Roy Cropper.
My son was diagnosed last year at the age of seven, with his love of lining up toy trains and regurgitating strings of facts. But during the long assessment period I came to learn that one size doesn’t fit all. My son doesn’t mind eye contact, he has a great sense of humour and he is extremely loving and affectionate. It was when I stumbled across some information on women and girls on the autistic spectrum that it suddenly dawned on me: Asperger’s can look even more different, and I have it too.
Clinical psychologist Professor Tony Attwood writes: “Girls and women who have Asperger’s syndrome are different, not in terms of the core characteristics but in terms of their reaction to being different. They use specific coping and adjustment strategies to camouflage or mask their confusion in social situations or achieve superficial social success by imitation.”
Many women with Asperger’s appear to have no problems on the surface. These girls, perhaps helped along by a higher than average IQ, use intellect to work out how to interact rather than learning it intuitively.
The disadvantage of this is that none of it comes naturally. A conversation with a friend may be accompanied by an interior monologue: Am I making enough eye contact? Don’t forget to ask her something about herself. Keep nodding and laugh at the right times… It is in essence, an act, a conscious effort, which is literally exhausting.
Asperger’s was barely heard of when I was a child, but I can’t help but wonder what difference a diagnosis would have made to me back then. I was lucky I had a large group of girl-friends in high school that I could hide amongst. But when one of my two best friends left for a different college and I had a falling out with the other one, for reasons I never fully grasped until years later, I was left on the edge of a group that I was starting to feel more and more distanced from.
Everyone else was growing up emotionally and socially, but I found the unstructured setting of free periods in the common room to be something far too excruciating to bear. I couldn’t understand the reason for social chit-chat or see the point to a lot of the conversations. I didn’t know how to be part of that. I suffered a kind of breakdown. I was depressed and anxious and most days would either fall asleep in lessons or have to leave the classroom in floods of tears. Years went by of failing to make meaningful friendships, self-medicating, bulimia and eventually, suicidal thoughts.
Many women have similar stories to tell. It is essential girls understand why they feel different to everyone else – they are not defective and it is not their fault. It has only recently started coming to light just how many undiagnosed women and girls remain, and how many young girls are still slipping through the net, despite increased awareness of autism in schools and health and social care settings.
This is because many of the myths of Asperger’s are still circulated as fact. I have attended training sessions that put far too much emphasis on the outmoded theory that autism is a manifestation of the “extreme male brain“, a term first coined by Professor Simon Baron-Cohen.
I also often hear the phrase: “people with Asperger’s have no empathy.” This is not true for many men with the condition, and even less so for women. Many women with Asperger’s join professions such as nursing and teaching, and research now suggests that people with Asperger’s experience higher levels of concern for others when witnessing their distress than neurotypical people do.
Although the medical profession is making advances in its understanding of Asperger’s, it takes years for new knowledge to be disseminated and for mindsets to change. In the mean time, the best all of us can do is talk about women with Asperger’s as much as we can, and hope fewer little girls will have to face a future of mental ill health and unnecessary struggles.
Michelle Parsons worked for five years for a charity that supports unpaid carers. She has two children with Asperger’s Syndrome; one is a little girl who is yet to receive a diagnosis. Michelle has a degree in Cultural Studies and Creative Writing and has just started blogging at aspergersanxietyadhd.wordpress.com
Photo: Stephen Woods
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