While one in four people diagnosed with Kanners/Classical Autism are female, only one in nine people diagnosed with high functioning autism or Asperger’s’ Syndrome are female. Many specialists agree that these numbers should be much higher, and some women and girls with Asperger’s may have slipped through the net, remaining undiagnosed despite the profound issues they have with social awareness and communication. There are many reasons why this might be happening, including Simon Baron Cohen’s theory that autism is an example of the extreme male brain and the distinct lack of representation of autistic women in books, television shows and other media. When most people think “autism” what comes to mind is Rainman, The Big Bang Theory or The Curious Incident of the Dog in the Night Time, all of which have principle male characters who conform to the ‘troubled genius’ stereotype we have come to associate with autism. In real life, it’s rarely that black and white.
Autistic women do exist. We are under diagnosed and under represented, but we’re still here. (And no, not all of us are obsessed with science, maths or comic books). I got my diagnosis of Asperger’s Syndrome when I was six years old. Since then I’ve met many high functioning autistic women who weren’t diagnosed until much later in life, often their early twenties, thirties or forties. The diagnosis of autism or Asperger’s Syndrome often came after several months of engaging with mental health services (or in one case, following an assessment for dyslexia). These women, whom I won’t name for the sake of their privacy, had struggled their whole lives with the knowledge that they were different. But they had no frame work for understanding this difference, and no additional support. Why don’t I know how I’m supposed to act in public? Why can’t I be like everyone else? In many cases, the price paid for such a late diagnosis was depression, anxiety and low self esteem.
Sarah Hendrickx, author of Women and Girls with Autism Spectrum Disorder, remained undiagnosed until she was forty three. She had already written several books on the subject of autism, and was married to an autistic male, yet her Asperger’s Syndrome still wasn’t diagnosed. Hendrickx stipulates that…
‘There are plenty of women with autism, but we just hide it better, make sense of it differently or present it in a way that slips under the radar of those looking for classic (male) indicators derived from the (almost) exclusively male research (or at least research that does not differentiate according to gender (Hendrickx, Women and Girls With Autism Spectrum Disorder, p. 15).
Personally, I think that women are better at masking their autism because from a young age, we are pushed to spend more time socialising, stereotypically “girly” play(ie: playing with dolls, playing house) also relies more heavily on social skills and empathy than stereotypically “masculine” play (ie: football, playing with cars). From a young age, girls are also taught to place far more value on their appearance than boys- this includes behaviour, not just make up and dresses. All of this points to the fact that being “feminine” is somehow associated with being social. Thus, girls with Asperger’s Syndrome learn to mask their autism from an early age if they are to interact successfully with their peers.
But what about the young girls who fail to mask their autism? In some cases (mine included) they receive an accurate diagnosis and schools make some effort to support their individual needs. This is undoubtedly positive. But for girls with autism, the failure to mask their disability often results in exclusion from the deeply social world of women and girls. Indeed, after interviewing a group of autistic women Hendrickx came to the conclusion that ‘the strong sense of not belonging with ones same sex peers, and feeling alienated from one’s birth gender is common for those with autism.’ (Hendrickx, Women and Girls With Autistic Spectrum Disorder, p. 158)
Personally, I do not recall feeling alienated from my birth gender or from other girls in particular when growing up. Rather, I felt that I didn’t belong with anyone my own age, particularly the people I went to school with, who sometimes bullied or spread rumors about me. (I now have the intellectual awareness that it’s perfectly normal for teenagers to spread rumors and gossip about one another, at the time I did not have this awareness and often felt I was being victimized). For me, the world of other teenagers was governed by a complex set of rules that required highly developed social skills In order to be understood. I did not possess these skills. My inability to read facial expressions also meant that any social encounter was fraught with anxiety. Does she really want to know how my day was, or is she just asking to be sarcastic? It’s safer not to engage.
The friends I had when I was a teenager were mostly male. At the time I felt that we were bought together by a shared interest, such as Marilyn Manson, Dr Who or preparing for the impending zombie apocalypse. Looking back, most of these boys had Asperger’s or other social/mental health issues. Indeed, they often expressed trouble understanding the social world of their male peers, just as I had trouble understanding the social world of my female peers. Being my misfit group of friends was like being at the Mad Hatter’s Tea Party. From the outside our social interaction looked chaotic, but inside we were safe and at ease because there was much less risk of being judged. ‘We’re all mad here.’ (Lewis Caroll)
I was often called a tomboy, something I came to resent as I got older, dressing hyper feminine in lacy skirts and corsets in an effort to remind my peers that I was still a girl, I just didn’t always know how to socialize with other girls my age. This sense of being on the outside, not connecting with others, seems to be a common experience for people with autism. According to Simon Baron Cohen ‘When we looked back on the childhoods of people with AS [Asperger Syndrome], they almost always tended to be loners… as for the female patients with AS, many of them recall being described as tomboys in their behavior and interests’ (Baron Cohen, The Essential Difference, p. 145).
While I’m aware that my interests weren’t typically feminine, they were far from typically masculine (I was never into football and beer). The same went for my male friends, some of whom enjoyed trying on my makeup and jewellery. I’ve never identified with Baron Cohen’s depiction of the tomboy autistic female with a systemizing brain (for further information, see my article “Gender, Empathy and Simon Baron Cohen’s Theory of the Extreme Male Brain”. I find it much easier to relate to Hendrickx’s theory that ‘rather than women with autism being more masculinised per se, both genders may be more androgynous’- (Hendrickx, Women and Girls With Autistic Spectrum Disorder, p. 27).
It’s my opinion that, for this reason, autistic people are more suited to socializing in mixed gendered groups. I know I feel more comfortable in this environment, as the conversation is usually interest based. In mixed gender groups behavior outside of the norm is also more tolerated, because we expect to find differences between men and women. The bulk of my male autistic friends seem to have female best friends, and vice versa. However, this can cause some confusion for the neurotypical community- you two hang out all the time but you’re NOT dating?? I could spend hours writing about the confusion autistic people experience around gender and dating, and how the expectations of others have the potential to tarnish what for us could be a completely innocent friendship. But all that belongs in another article.
If you’re going to take anything away from this article, let it be this:
- Autistic women do exist. We are under represented, and often misdiagnosed because autism presents differently in women, and most of the indicators that professionals look for when making a diagnosis are still based in male behavior and male psychology.
- Autistic women are often better at masking their disability, but this skill comes at a high price (misdiagnosis, a lack of appropriate support, social isolation and often extremely debilitating mental health issues).
- Being autistic has nothing to do with being more masculine, and I am no less of a woman than any neurotypical women.
It’s clear to me that female or male, high functioning or high support; autistic people have a different experience of gender. But the key word here is different, not less. The fact that autism presents itself differently in different genders is often overlooked, and if we are ever going to prevent autistic women being misdiagnosed and slipping through the net, this needs to change. Rather than simply dismissing autistic women as “tomboys”, professionals should examine how autism affects the female population in its own right. With the right support, an autistic female can learn to overcome her difficulties with communication and lead a full, active social life. But this support only comes after diagnosis.