It’s no secret that male and female autistics get diagnosed at vastly different rates. According to the NAS:
Various studies, together with anecdotal evidence have come up with men/women ratios ranging from 2:1 to 16:1.
Why is this?
Long story short, men and women with Autism present differently.
There could be a variety of reasons for this. Men and women do have literal structural differences in the brain, and different hormonal levels, so they’ll have different reactions to the same challenge (i.e. autism).
Another, more popular, theory is that these differences arise because girls and boys are socialized differently as children. Young girls are more likely to be encouraged to behave in certain ways, whilst young boys are more likely to be excused for their behaviour (not that it needs excusing). Young girls are expected to be social and are more likely to be forced into social situations, where we get more practice at “masking” and learning to mimic other people’s behaviour. We rote learn how to react in specific situations but the behaviour is shallow, and rarely has any deeper meaning than “last time I did this behaviour it was good”. We struggle to generalise across different scenarios and won’t always think to carry behaviour over from one situation to another, and we don’t really understand why some behaviours are good and some are bad. We just know that they are. As a result, we only do the “good” behaviours and we appear to be behaving neurotypically – a little shy or awkward or brash or sassy prehaps (depending on how self-aware we are at that particular age) but within the generally accepted range of “normal” human behaviour.
Women and girls learn to act in social settings. Unenlightened diagnosticians perceive someone who appears able, who has reciprocal conversation and who uses appropriate affect and gestures as not fulfilling the criteria set out in the international classification systems. Therefore a diagnosis is missed.
Social life did not come at all naturally to her. She used her formidable intelligence to become an excellent mimic and actress, and the effort this took often exhausted her. From the time she started reading at three and throughout her childhood in gifted programs, O’Toole studied people the way others might study math. And then, she copied them—learning what most folks absorb naturally on the playground only through voracious novel reading and the aftermath of embarrassing gaffes.
Personally, as kid I was outgoing and generally happy with little to no filter between my mouth and brain (but I mostly got away with because my thoughts weren’t too bad and I was a kid) but as I grew older me and my classmates grew more aware of the differences between them and me, I got bullied a lot, I grew more self conscious, and I began to get scared of speaking too much it case it came back to haunt me (which it did, frequently). Things are getting better these days as I have a lot more choice in who I hang out with since I left education.
Because I was largely behaving normally, I was developing normally, and my grades were good, my struggles were going largely unnoticed. I lacked the language to put my difficulties socializing into words, so I got told I was shy a lot (which I am, now, but that wasn’t the problem), I got told that everyone gets bullied (remember the rhyme about sticks and stones?), and I got told that “everyone likes to believe that they are different, that they are special, but they’re not” (I wasn’t trying to say I was “special”, I was trying to say that I needed help). It wasn’t until I got to my A-levels, and the nature of education changed from learn-and-churn to extrapolate-and-generalise, that my grades started to drop and some more serious mental health problems started to show (autistic burnout, most likely). These people were all well-meaning – but they failed to help me understand why I was different.
Finally, most of the research done has been on men. Most medical studies use male participants and test subjects – as a result we only recently found out what a female heart attack looks like, let alone female autism. This means a lot of doctors literally don’t know what female autism looks like.
“My mom agreed, and spoke to my psychiatrist, who didn’t want to change my diagnosis, because although autism was first described in the 1940s and these conversations took place in 2004, he had never heard of a woman with autism.”
(Quote source – a humour website nominally, but posts a lot of fascinating articles)
All the diagnostic tests are based on observations of male autistics, so at first glance we might not meet the criteria. Female autistics tend to have different forms of “special interests” as well. We don’t tend to fixate on “unusual” topics, instead we fixate on ordinary topics to an extraordinary degree.
The girls also had fewer (or perhaps less obvious) signs of “restricted interests”—intense fixations on a particular subject such as dinosaurs or Disney films. These interests are often a key diagnostic factor on the less severe end of the spectrum, but the examples used in diagnosis often involve stereotypically “male” interests, such as train timetables and numbers.
O’Toole’s obsessive focus on reading and finding rules and regularities in social life is far more characteristic of girls with autism than boys, clinical experience suggests.
For example – my special interest is my writing. I am obsessive about my own personal ficitonal universe I’ve created – but that could easily be mistaken for someone with a passion.
So we slip under the radar because we come across as less “odd” than autistic boys. When we finally crack and try to seek a diagnosis, we have no childhood history of struggling, so we are less likely to be given the correct diagnosis. Misdiagnosis of female autistics is incredibly common.
Especially in those who also happen to have depression and anxiety after a lifetime of undiagnosed struggling.
We need to try raise awareness, reassure those who are self-diagnosed or seeking a diagnosis that they’re not imagining things, bring more information to light about the differences between male and female autistics, and hope that we can ease the future diagnosis of those who need it.
And one final fun fact: although there is only limited research at this point, some studies suggests autistic people identify as “other” genders (i.e. not male or female) at a higher rate than the general population. Although it’s all a bit chicken-or-egg, causation-or-correlation at this point – we don’t know enough about eithier or the relationship between them to draw any big conclusions.