Autism is not a boys’ club.
To mark International Women’s Day, I’m dedicating this post to all of the autistic women and girls who are repeatedly denied a formal Autism Spectrum Disorder (ASD) diagnosis by medical professionals, and are forced to navigate neurotypical structures and institutions by themselves.
This is the reality for autistic women and girls, myself included, who had to wait 28 years to understand why my brain is wired differently. It’s a fact that more men than women are diagnosed with autism. Various studies suggest that the ratio of autistic males to females ranges from 2:1 to 16:1. The most-up-to-date estimate is 3:1 (National Autistic Society). But don’t let these stats fool you. It does not mean that men are more likely to be autistic; it means that men are more likely to be diagnosed. There are autistic women out there, except, more often enough, the doors to a diagnosis are slammed in our faces because we just don’t seem ‘autistic enough’.
So why is this the case? Is it because parents of autistic girls are not picking up on the early signs? Are clinicians too reluctant to diagnose girls as autism has always been about having a ‘male brain’? Are researchers failing to conduct representative studies on autism and producing results from a sample of autistic boys? I believe it’s all of these things…and more. But, I believe the issue starts with the diagnostic tool itself.
In the UK, an autism assessment involves a number of tick box questionnaires filled out by the autistic person, the psychologist or the parents of an autistic child. There’s also an observation conducted by the psychologist to monitor body language, tone of voice and other cues that might point towards autism. I took these tests last year and encountered issues with the content of some of these questions. To put it bluntly, I told my psychologist that the questions sounded like they were written for a teenage boy; not a 28 year old woman.
Here’s an example statement: “I am fascinated by car number plates” to which I had to answer on a scale of one to five, with a 5 being a definite ‘yes’ and a 1 being a definite ‘no’. I knew what the question was attempting to find out — whether my brain liked numbers and predictable patterns which according to decades of research (on boys, nonetheless), is an autistic trait. I was suddenly faced with a dilemma. I’m in no way obsessed with car number plates; in fact I hardly notice them. However, I do find comfort in predictable patterns. So do I choose 4? What if I put 1 — would the psychologist say that I’m not autistic enough? Another statement from the test: “I enjoy reading train timetables.” I mean…they are useful, but I’d much prefer reading a book. Again, I didn’t know which number to circle because if I circled a 1 or a 2, perhaps the psychologist would think I’m not autistic enough. This self-doubt continued throughout the assessment.
“Not autistic enough”. This phrase is what most autistic women think when we are either seeking a diagnosis or having just received a diagnosis. It’s classic imposter syndrome that follows women, neurotypical and neurodivergent alike, everywhere. More worryingly, this phrase is also uttered by some psychologists whenever they assess a woman or a girl for autism. We will not solve this disparity when it comes to diagnosing women and girls until the actual diagnostic tools, together with the clinicians using them, recognise that gender differences do play a part in diagnosing autism.
Early socialisation still shapes autistic girls’ and boys’ identities. Neurotypical and neurodivergent boys are encouraged to play with cars and trains while neurotypical and neurodivergent girls are encouraged to be social and nurturing. Ultimately, these early roles influence our actions and behaviours. Therefore, if the autism diagnostic questions are skewed towards typical ‘boy’ activities and stereotyped behaviours, then where does it leave autistic women and girls?
As autistic women have been taught (or rather forced) to be nurturing and social our whole lives, as well as nudged towards more ‘girl friendly’ activities as a child, it is very hard to suddenly stop performing these gender roles that were placed upon us from birth. As a result, when we encounter the diagnostic questions about liking number patterns and being obsessed with trains and cars, we choose ‘no’. Similarly, when we maintain eye contact and smile at the psychologist when taking the test, our autism is not taken seriously. Why? because these are behaviours that, according to clinicians, autistic people don’t normally display. What clinicians need to recognise is that these behaviours are what autistic women display. Since we have been socialised to accommodate people’s feelings and to be polite, it’s within us to make eye contact and smile at people, despite how uncomfortable we feel about doing so. This is called ‘masking’ and should be taken into account when women and girls are being assessed for autism.
There is finally some recognition among medical professionals that there is indeed a ‘female autism phenotype’ — in other words autistic females have characteristics which don’t fit with the profile. But is this being reflected in the diagnostic materials? No. Is this being taught to psychologists? Hardly. According to author and autistic scientist Dr. Camilla Pang, autistic women and girls are more likely to be diagnosed as anxious and as a result, an autism diagnosis is overlooked. While autism is a neurotype and inherent, how women and girls present their autism is partly due to how we were socialised.
A five year old girl who likes logical patterns, prefers reading to creative play with others and doesn’t see the point in social chit chat is labelled ’strange’ and is forced to become a ‘proper little girl’. In doing so, her autism is erased until she can mask no more and at the age of 28, is sitting in a psychologist’s office asking why she feels out of place in this world; when all along she could have had a diagnosis that would have helped her to navigate the harsh neurotypical world.