Women and Autism: facts and thoughts

A big recent research project that analyses a number of epidemiological studies on autism, reported an approximately 3:1 male to female ratio of ASD (Autism spectrum disorder) diagnosis. There has been a long debate over the past years on the reasons that lead to this discrepancy, and it seems that there are definitely more than one factors involved. Taken in mind that recent studies on twins did not show any evidence for the existence of sex-specific genetic differences between male and female autistic individuals, it has been assumed that there must be specific mechanisms by which females may be relatively protected from developing autism. The theory of higher genetic threshold for ASD in females in relation to males has also been described, something that hasn’t been confirmed yet though. Another theory that attempts to explain the different prevalence of autism in males and females, suggests that female hormones may play a role in it. Elevated levels of fetal testosterone have been shown by researchers to be involved in the development of ASD, and there have been some findings of higher levels of testosterone in autistic females as compared to typically developing females.

Missing a diagnosis

Regardless of of hormonal or other idiosyncratic factors affecting the incidence of autism in females, it is more than certain nowadays that unfortunately some (or more) autistic females are missed by current diagnostic procedures, or are misdiagnosed. Females tend to get diagnosed predominantly when their autistic traits are significantly and visibly debilitating. Clinicians are especially missing the girls and women who are on the less disabling end of the autism spectrum, also known as Asperger’s syndrome.

Besides being very often overlooked as autistic, females tend to be diagnosed with other disorders instead. Some of the false diagnoses include eating disorders, ADHD (especially since autism and ADHD symptoms tend to overlap), OCD (repetitive and restricted behaviours of autistic individuals can look a lot like OCD), bipolar disorder (emotional dysregulation can cause some autistic women to be misdiagnosed as bipolar and vice versa). A significant number of autistic people get also misdiagnosed with clinical depression, anxiety and personality disorders. What causes all this confusion though?

Different brains?

It seems that the brains of autistic women are markedly different from non-autistic women. Behavioural studies and neuro-imaging findings suggest autism manifests differently in females compared to males. It actually seems that autistic female brains may resemble more to typically developing male brains than neurotypical female or autistic male brains, especially when it comes to their social abilities. This potentially means that by overlooking the fact that a girl is behaving like a boy we are actually missing a potential diagnosis. Additionally, autistic girls show less repetitive behaviour than autistic boys. They also have socially acceptable obsessions such as research, music groups or movie stars which makes it even more difficult to identify their hobbies as special interests and consequently as an early sign of autism.

Females can camouflage better

Autistic traits may be better camouflaged in females, something that is often called masking. This could mean that current diagnostic procedures may be biased against females, something that comes in contrast with the traditional belief that females are simply at reduced risk for developing ASD. Having been developed with a predominantly male sample, ASD tests and diagnostic procedures are likely better at capturing autistic traits as they present in males. Therefore, females currently being identified may be those with autistic trait profiles that are closest to the average male profile of autism.

Autistic women seem to be compensating more for their social deficits, though they struggle just like autistic men. Females on the spectrum have been described as being like swans: ‘they seem to be gliding gracefully across the surface of life, but in reality they are paddling furiously under the surface just to keep afloat’. This is believed to be due to greater social pressures on women that makes them involuntarily choose to camouflage. Social life does not always come naturally to autistic females, but they use their high intelligence to mimic and they become ‘chameleons’ when needed. Autistic females study people and manage to learn at least some of the social rules via observation, reading books or watching films, and they eventually apply these rules to everyday social situations. Unfortunately excessive masking has been shown to result in identity crisis, high rates of anxiety, depression, suicidal thoughts, and burn out.

Autistic women against patriarchy

To analyse the background that leads autistic women to these behaviours, one would have to dig really deep and investigate the unequal relationship between the two genders from the beginning of human time. Women are trained and expected to be quiet, fade into the background and adjust their behaviours in order to blend in, while it is totally acceptable for men to stand out in a good or a bad way. Women, autistic or not are accepted when they are pleasant to look at, are ‘nice’ to everyone and when they comply with the loving mother or conformist wife prototype. They cannot afford to be eccentric, blunt or demonstrate too much confidence.

And that is where the problem lies. Autistic women often find it difficult to identify the norms they are expected to follow, and even when they do, if they can’t see the point then most of them can’t bring themselves to break their necks and try. Not unlikely autistic males, they have little patience or respect for things that seem (are) stupid. Autistic women and men are natural non-conformists and usually have very strong opinions about what’s fair and not. Their lack of filter commonly described as ‘being too honest’ or ‘too blunt’ comes in vast contrast with what our patriarchal society considers feminine and socially appropriate. That is why they choose to mask. They mask hard because they are smart enough to know that social isolation is often not unlike a death sentence. They end up living an exhausting life, often being misunderstood as lazy, eccentric and being difficult. And this leads to all sorts of mental health problems, including social anxiety, depression, suicidal tendencies and burn out.

I think we need to start looking at those quiet girls and women who sit in the background, are intensely absorbed in their interests, and seem to be a bit odd or rude when they speak up their minds. Awareness when it comes to female autism is still at its infancy if any, and this is why all health professionals need to be trained in recognising autistic females. This quirky young woman you met at your practice is not necessarily a self centred narcissist. The girl with the food disorder that visits A&E does not necessarily suffer from anorexia nervosa and anxiety is often a symptom of something else. To paraphrase what the author and psychologist Maria Konnikova has written in her book The Biggest Bluff: ‘pay attention’. Current ASD tests and diagnostic procedures are still based on the traditional autistic male prototype, can therefore be misleading and urgently need to be changed.

Identifying these women and dealing with pathological masking is immensely significant in order to tackle mental health issues in autistic girls and women. If healthy and thriving, autistic women have so much to offer to society and all sorts of contributions to make to all scientific and professional fields. It is therefore brighter than daylight that we would all benefit from finally giving them a voice and by acknowledging and accepting their existence.