If you ask someone to name famous people (fictional or non-fictional) who are known for having autism or being “on the spectrum”, Rain Man is often the top favourite, possibly followed by Sherlock Holmes (especially in his recent incarnation by Benedict Cumberbatch). Sheldon in the Big Bang Theory is another. Very rarely will anyone come up with a woman’s name. So are there really very few women with autism, or is it just that we have too narrow a view of what autism looks like?
The term autism or autism spectrum disorders (ASD) refers to lifelong behavioural difficulties associated with a wide range of problems (hence the “spectrum”), usually to do with social skills. People on the spectrum can, at one extreme, have severe learning difficulties, including challenging behaviour and the absence of language, or, at the other extreme, have normal or even extraordinarily high levels of ability, possibly in particular areas such as music or maths.
An extreme male brain?
Historically, autism has been characterised as a male disorder, four or more times more common in boys than girls, although at the more impaired end of the spectrum the quoted ratio is more like 2:1. This is often how people think of autism, of the “nerdy” male, quite socially impaired and with strange and quirky special skills. This is supported in research by the existence of theories such as the “extreme male brain”, where it is suggested that ASD is an exaggerated manifestation of “systemising”, a particular male way of thinking associated with a very focused interest in, and need for, predictable rules and systems.
But there is increasing awareness that the apparent maleness of the condition may be more to do with the failure to recognise autism in girls and women who, at the less impaired end of the spectrum, manage to fly under the diagnostic radar, and are spotted much later than boys.
Here Come the Girls, a film by autism researcher, Hannah Belcher, shows how different the female experience of autism is compared with the male experience. A common thread is how much harder women find it to get their difficulties recognised (“you can’t be autistic, because you make eye contact”) or how much older they are before they are diagnosed.
There are several possible explanations for this. This difference could be biological, with a “female protective effect” associated with having two X chromosomes that reduce the impact of genetic factors in girls. This means there would need to be a much greater number of adverse genetic factors before the condition showed up. This would explain why girls who do get diagnosed with ASD tend to be at the more impaired end of the spectrum. This has been confirmed by a recent study of 10,000 fraternal twins, which showed that girls with ASD came from families with a much higher incidence of autism in other family members or who show evidence of autistic traits such as social awkwardness or obsessions.
It could be that there is a “gendered lens” when it comes to diagnosis, a form of self-fulfilling prophecy, where thinking of autism as a male problem makes it less likely that a girl will be given a diagnosis. Or it could be that the process of diagnosis itself is somehow geared towards spotting boys. For example, parents of girls on the spectrum have said that the examples given to help them answer questions about their children’s unusual interests and obsessions are much more slanted towards “boy-type” interests. The parent might be asked: does your child have an unusual obsession with metal objects, lights or street signs? But their daughter’s obsession might be more to do with particular animals or dolls or pop stars.
Hiding in plain sight
Or it could be that girls have a range of “camouflaging” behaviours. Possibly because girls are more likely to be encouraged to be well-behaved and socially sensitive, they have a greater awareness of the importance of social rules and conformity, of being sensitive to others, or forming friendship networks. To do this, they realise they need to learn how to imitate expected behaviour. This is a common theme among women on the spectrum who describe the exhausting process of continuously monitoring and copying the social interactions that appear instinctive to their “typical” peers. This has been dubbed the problem of “hiding in plain sight”.
There is increasing awareness that our current understanding of autism is “missing” the girls. This is an important step, as it is commonly accepted that early identification and access to the right support services are key in determining a better future. A sure sign of greater interest is the emergence of Saga Noren, a fictional detective in The Bridge, who is commonly described as being on the spectrum. The National Autistic Society’s Autism in Pink campaign has identified key issues, and researchers are focusing on the female autism conundrum.
April 2 marks the beginning of world autism awareness week. Famous landmarks around the world will be “lit up blue” proclaiming “it’s all right to be different”. Let’s hope this message reaches girls on the spectrum too and that we stop thinking of autism as a boy thing.