The female autism phenotype: Typical versus non-typical ASD in girls and women
Why is it that females tend to stay under the radar, or are even not considered at all, when certain mental health conditions are concerned? For example, they are diagnosed with both Attention Deficit Hyperactivity Disorder (ADHD) and Autism Spectrum Disorder (ASD) much less frequently than males. One possible explanation is that females tend to be better at camouflaging their symptoms and try harder to be part of their peer group. This camouflage strategy is also seen in females with high cognitive ability, who would rather give incorrect answers in tests in order to get average grades so that they fit in with their peer group. They gladly trade their identity for belonging.
“Is something similar happening with ADHD and autism, or is their prevalence lower in females?”
Female-specific research has only begun intensifying in recent years, so there is still much more we do not know than that we do. It certainly does not help that the diagnostic criteria for both ADHD and autism are based on primarily male data (i.e. the studies that provided background data for developing diagnostic criteria used mostly male participants) and may not at all be suitable for diagnosing females. Think of the issue of new medications being tested primarily on healthy, young males. Professionals have only in recent years begun to realise that certain medicines found effective for treating males are not suitable for females. Consider also the recent finding that treatment of cardiovascular disorders is very different for both genders. Similarly, the diagnosis and treatment of autism is likely to differ between males and females.
Indeed, we know that many of those females who do receive a clinical ASD diagnosis were initially referred for depression or anxiety, not for an ASD diagnostic procedure. We also know that many diagnosed females received a diagnosis because their symptoms were so severe they could not hide it (like females like to do) and it was impacting on their lives to the extent they just could not function. Often, one of the reasons for their symptom severity was a co-occurring learning disability or low cognitive level. And finally, we know that with male-biased diagnostics being used for ASD, females with masculine ASD symptoms are more likely to be identified.
“So, it appears that females who are identified as having ASD are either impacted very severely by it, or have male symptoms.”
It seems to me there is a continuum of autism severity in females, and only the small number of females at the upper end, those whose symptoms are very intrusive, are being identified. When studying ASD, we often distinguish between Typically Developing (TD) and ASD groups, of men and of women. Within the ASD spectrum, I would like to propose a distinction between typical female ASD and non-typical female ASD. Those individuals who are severely impacted by their ASD, to the extent that they are identified where most females with ASD are not, fall in the non-typical category. Those individuals who have the characteristics of the female ASD phenotype but are able to mask it and for various other reasons do not receive a diagnosis, fall in the typical ASD category. This would mean the vast majority of females, those with typical ASD, are not picked up at all. Indeed, some recent studies show that large numbers of females with undiagnosed autism may be going through the education system. Due to this lack of identification, they do not receive appropriate support, leading to social isolation, lower grades, loneliness, confusion, depression, and less future opportunities.”
“What about those many females who are not identified, what do we know about them? Well, nothing actually.”
Since they have not been identified and therefore have not been included in any scientific study; we unfortunately have no knowledge whatsoever on these females. We do know a little about diagnosed females. However, they have only been included in research in the past decade or so, and always in very small numbers, hence it is difficult to draw solid conclusions. But there certainly have been some interesting findings on these females. For example, diagnosed females show many similarities to males in terms of their need for structure, visual as opposed to verbal strategies, and low arousal environments. We also know females face the same academic struggles but are not as vocal as males: they do not like to ask for help, and will try to hide their difficulties. Indeed, females tend to ‘suffer in silence’ and pretend they are just a typical girl or woman. By doing so, females disappear into the mix of students. The limited information gathered from academic studies as well as from practice shows that females in comparison to males are better able to integrate verbal and non-verbal behaviours, maintain reciprocal conversation and initiate friendships, but not maintain these friendships. They generally present with less typically autistic (read: ‘male’) traits, considerably less and different restricted interests, less co-occurring conditions, and experience less problems at school. On the other hand, females have been found to show more sensory symptoms, greater impairments in empathic behaviour as toddlers, and more extensive social deficits overall, although some studies have also found higher self-reported and teacher-reported social functioning. This leads us to believe that the willingness or ability to maintain social ties may be differentially affected among females with ASD. For example, they tend to be better able to follow social actions by delayed imitation than their male peers. In childhood, they observe other children, are often led by them, and copy them, which again camouflages their symptoms. But females with diagnosed autism are also more socially aware than males and feel a need to interact socially.
“So, if even those females who are diagnosed with ASD are well able to mask their symptoms and hide the severity of their condition, what hope is there for all those with typical ASD?”
Well, we need large samples of females to participate in studies aiming to elucidate the female ASD phenotype. We need to look at females who have been tested for ASD and were found not to be below threshold for diagnosis, and examine their characteristics. We know what typical male ASD looks like, all we have to do is look at the DSM-V criteria. Now, we need to find out what typical female ASD looks like. This is exciting, because we need to work top-down. We already have some information on females with non-typical ASD, as they have been diagnosed and included in studies, and we also have information on typically developed females. Using the information we already have, and investigating large samples of females, we should work towards a female autism phenotype. And in the future, gender norming in diagnostic criteria. After all, I think we all agree women and men are quite different. Also women and men with ASD.
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