We talked to people diagnosed with autism and leading experts about how sociological factors, academia, and the media are letting women with autism down.
This article originally appeared on VICE UK.
Having autism is tough. We endure lower rates of employment, higher rates of bullying, enough social fuck-ups to make Mark Corrigan or Michael Scott seem like a charming, polished socialite, and a lifetime of explaining to skeptical, uninformed people that autism doesn't make you fucking Rainman. It's hard.
It's even harder if you're female, too. VICE recently reported on how autistic women in the UK are being failed by the NHS, with a survey conducted of more than 100 women by Autism Women Matter, suggesting that many women found it difficult to get a diagnosis, as well as being refused referrals for treatment.
Men are diagnosed with autism far more than women, with the ratio generally regarded as being around 4:1 male to female. With Asperger's syndrome, it's a ratio of 15:1. Why is this? And what can be done to assure that females with autism are getting the help and support they need?
There are many reasons why women are diagnosed far less than men. For a start, women tend to be better at masking their symptoms. In The Complete Guide to Asperger's Syndrome, Tony Attwood states how, at school, girls are generally better than boys at socializing, usually because girls are expected to be more social. They cope by copying other behaviors, using "intellectual abilities rather than intuition to determine what to say or do." Through no fault of their own, this makes it harder for women to get diagnosed.
This ability to mask symptoms can, in some cases, lead to secondary disorders, meaning that a possible autism diagnosis is overlooked. For example, anorexia is a disorder that is heavily linked with autism. According to Autism Agony Aunt and author Kate E. Reynolds, 20 to 30 percent of anorexic patients are perfectionists, exhibiting rigid modes of thinking and behavior—characteristic autistic spectrum symptoms.
Perhaps, though, the main reason why females don't diagnosed is more simple – men. As Carol Povey, Director of the NAS's Centre for Autism states, "Past research into autism has concentrated overwhelmingly on males, meaning that the way we understand the condition, culturally and clinically, tends to be based on the experiences and behaviour of men and boys," she says. "It could be seen as a form of unintended structural discrimination." As an example, this study states how 85.8 percent of the participants in autism research by respected journals were male.
Women with autism have been found, on the whole, to be diagnosed far later in life than men, and are fare more likely to be either misdiagnosed or not diagnosed at all—frequently, they're mis-labelled as having some sort of personality disorder or mental illness instead. A first person account in the Guardian in January detailed how it took one 24-year-old woman three years and three separate GPs to get a formal diagnosis. One doctor claimed she couldn't be autistic because she had a boyfriend. Another had to look up in a book what Asperger's was.
When I asked my own GP to be referred for an autism diagnosis three years ago, my doctor spent ten minutes talking about something called aspergillosis. This was after he'd told me about the time his sons had been on Countdown and met Carol Vorderman, showing me the relevant photos. Of course, my experience isn't indicative of people's wider experience with their doctors, but if my parents hadn't forked out more than $400 for a private consultation, I highly doubt that I—white, male, and much more "likely" to have autism—would have got a formal autism diagnosis.
"It's a sort of double discrimination: being female, and being disabled." –Monica Blakemore of Autism Women Matter
In the NHS's guidance for dealing with people with autism, there were no provisions for women's differing needs. As Monica Blakemore, founder of Autism Women Matter, told VICE in January, "It's a sort of double discrimination: being female, and being disabled."
I talked to Laura (not her real name), a university student at a London, who was diagnosed with Asperger's syndrome at the age of eight. She was lucky her diagnosis was fairly quick—her mother was "pushy," due to the hard time she was having at school at the time.
"I've always had very strong interests for certain lengths of time," she tells me. "At that point it was animals. All I wanted to read about animals. We had to keep a reading diary noting what we have read, and, after noticing my lack of variety, my mom banned me from reading them. Not that she could stop me, but I was such a slow reader that I would then be accused of having nothing in my reading diary. I got so scared of reading that I physically couldn't read anything more complex than, say, Animal Ark, for years.
"Playtime was always the worst. At first it was OK. It was a time that I could spend alone, talking to the trees or playing 'ball on the wall,' but that was time that I could get away. Then the teachers got involved. It was hell, being forced to join games I had no interest in with people who had no interest in me. It was like an outdoor prison."
Things got better for Laura at secondary school, as she learned to act more neurotypical and her teachers and fellow pupils became more understanding. But her experiences show how ignorance—not just of girls with autism but of autism generally—is still prevalent in society.
Certain academic spheres are letting women (and men) down by pedaling the idea that autism is a "male" disorder. Simon Baron-Cohen, cousin of Sacha, is one of Britain's most renowned autism experts and, over a decade ago now, came up with the Extreme Male Brain theory. He was the brainchild behind a series of tests which suggested that males score higher at systemizing and females score higher at empathizing, which, according to him, proves that autism—with its apparently low empathetic tendencies—is an inherently male disorder.
There are many criticisms of this theory. As Reynolds says, "Terming the thesis as the 'extreme male brain' introduces gender into the issue when adhering to a description of signs and behaviors might have been more appropriate."
Also, the theory doesn't appear to take sociological influences into consideration. This article from Baron-Cohen in 2003, listing stereotypical hobbies for men and women as "anecdotal evidence," I think, speaks of a general lack of consideration for sociological factors.
Plus, the theory intimates that people with autism lack empathy. I profoundly disagree with this. It's not a matter of lacking empathy—it's a matter of understanding, which I discussed for VICE in ' My Autism Doesn't Make Me a Robot'). The theory may not be in itself sexist, but it probably doesn't help the plight of women with autism if their disorder is seen, rightly or wrongly, as a "male disorder."
"We need to improve understanding of autism in every sector of society so that the unique difficulties women face will be recognized and more will face a diagnosis." – Carol Povey of the NAS's Center for Autism
So what can be done to improve things? The consensus is that earlier diagnoses are imperative. "All research shows that an earlier diagnosis of ASD, followed by appropriate interventions, will optimize the person's life chances," says Reynolds.
Povey says the issue is one of understanding: "We need to improve understanding of autism in every sector of society so that the unique difficulties women face will be recognized and more will face a diagnosis."
Steps are being taken, thankfully. The NAS has been involved with Autism in Pink, a project looking into the experiences of women with the goal of developing new approaches to support and education. Dr. Judith Gould, who works at the Lorna Wing Center for Autism, is amending the questions asked of girls during the diagnosis process. Plus, according to Povey, the Lorna Wing Center has seen an increase in women seeking diagnosis in recent years—all very positive things.
A big effort is still needed so that more women get a proper diagnosis, though. More research, more studies, and, perhaps most of all, a concerted effort to reach out to women and change the male biases that, under the surface, still dominate the world of autism.
Update: This article has been originally stated that studies say one man is autistic for every 4.3 women. It has since been corrected to state that studies say one woman is autistic for every 4.3 men.
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On the subject of mental health, my good friend recently lost his brother. Suicide is the biggest cause of death in men between the ages of 20 and 45—men are often afraid to reach out and talk about their problems, and we need to change that. If you have any spare change, please donate to Campaign Against Living Miserably (CALM).