Autism’s Lost Girls

I started talking between one and two. Growing up, I always had plenty of friends to play with: my army of cousins, and the kids on my block, who spent every okay-weather day racing bikes and playing manhunt. I was a polite little girl, always considerate of others. I got swept up in the Disney Renaissance, but the movies’ climaxes were always complicated for me. When Gaston fell to his death and Scar got devoured by hyenas, I felt a pang of sympathy for those loathsome villains.

They were frightened, and I couldn’t turn off my empathy for frightened creatures, even if they were the bad guys.

If my parents had taken me to a doctor and said, “We think our daughter’s autistic,” they would’ve been laughed out of the office.

So my parents weren’t concerned that I gobbled up Reese’s cups but spat out anything with peanuts. She’s a picky eater, they thought, never mind that my issue was texture, not taste.

If I cried hysterically after a long afternoon at the shopping mall, well, don’t all kids have tantrums? And my Harry Potter obsession was super common (hello, fellow 90’s kids). Maybe I just had a nerdy side?

Autism was seen as a nonspeaking boy rocking back and forth– and that’s pretty much it. Or maybe it was a socially awkward genius obsessed with train time tables. Of course, those are valid autistic descriptions under a broad spectrum, but either way, these over-simplified stereotypes in mainstream and professional understanding were squarely male.

But here’s the thing: I was an autistic child. I am an autistic adult. And I’m not alone; there are many girls and women and non-binary people like me, whose autistic traits go unrecognized because of their gender. Because as it turns out, autistic girls often present differently than autistic boys, and even mental health professionals are not always aware of the signs.

Medical Research Has a Girl Problem

The current approach to medical research is still woefully incomplete. “Scientifically verified studies” often means “studies that only (or mostly) tested the half of the population with Y chromosomes, and assumed those results apply to everyone.”

Autism is one such under-researched condition. What we know about symptoms of autism may really just be symptoms of autism in boys. Girls will often show different symptoms.

As a result, a belief emerged that autism is a boy condition. 1 in 59 children have ASD, and boys are four times as likely to be diagnosed. What can we do to help these boys? the neurotypical world asks. Why does it affect them so much more?

Well, autism doesn’t favor boys. The girls simply go ignored, or are misdiagnosed. It’s impossible to know how many lost autistic girls there are. What we thought was a large gender gap might be a lot narrower, or even nonexistent.

How Girls Present

Girls have special interests just like boys, but these interests tend to be more socially acceptable for girls, like fashion and horses. Most people wouldn’t bat an eye at a girl who always wants to play with her Barbies. I was crazy about Harry Potter, but at the height of 90’s Pottermania, what eight-year-old wasn’t?

There are also some differences in socialization. I was sometimes shy, but had no problem making friends in elementary school. Something shifted in middle school. Suddenly, I couldn’t navigate the complex, gossip-ridden world of tween drama; I still wanted to play pretend.

If you compare a snapshot of me at age 8 with me at age 12, they look like two completely different kids. No wonder my parents never considered autism–at the time, no one even knew that girls’ social difficulties can come later in adolescence. My issues were chalked up to puberty hitting me with the force of a freight train.

In reality, I was showing a characteristic that’s fairly common for autistic girls. But because we’re still stuck seeing the male model as the everyone model, we don’t recognize this as a symptom of autism.

Girls tend to be better at masking. Girls are often hyper aware of  social interactions, either because of biological differences or the way they were raised (personally, I think it’s more of the latter). They become mimics, masking so often that when they do come out as autistic, they get a lot of, “But you don’t act autistic!”

This might not seem like a bad thing–isn’t it good to be so “high-functioning?”–but masking comes at a cost. Masking causes stress, and many autistic women report feeling constantly exhausted. It could also cause suicidal tendencies, as some studies show that camouflaging is a factor in the high suicide rate among autistics.

The Consequences

There are consequences for overlooking girls. The girls themselves are no less autistic just because they aren’t diagnosed. I always knew that I was different, but didn’t know why. If someone told me, “Jude, you’re autistic, and that’s okay,” it would’ve saved me years of painful questions.

There are also wider societal implications. If autism isn’t a “boy” condition, then our entire view of autism is limited and inaccurate. If the gender gap doesn’t really exist (or is narrower), then the “alarmingly high” autism rates are actually much higher. Instead of viewing autism as a recent epidemic, maybe these high numbers indicate that autism is a normal, inherent part of humanity.

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9 Responses

  1. I’d like to hear more, but not sure how to frame questions, other than, what are other differences?

    I’d like to know what to look for in family, as it would seem likely there are autistic women among them.

    1. This is mostly anecdotal, but the undiagnosed autistic women I know tend to appear very introverted. We keep a lot of our traits hidden, but there are subtle signs. They might seem nerdy or passionate about their interests, even if they refrain from talking about them a lot. They might be capable of deep discussions in small groups or one on one, but freeze up in a crowd or around unfamiliar people. They’re probably very sensitive, compassionate, and empathetic. They will likely still have sensory issues, and might share that they hate crowds, loud noises, certain textures, etc. They could have anxiety, eating disorders, ADD, or OCD, or be diagnosed with another mental disorder.

      I wish I could be more specific, but it’s hard since girls/women tend to be so good at masking.

      1. Oh … you’ve just described me (apart from the eating disorder and ADD). That was very helpful, thank you!

  2. This sounds like my childhood. Except when I was 12-14 my mom got stage 4 cancer, survived but my dad died immediately after. Instead of being confused by middle school and high school, I was able to ignore them by focusing on growing up too fast. Most people attribute it to ptsd…but I lack connection developmentally with that age group. Severely.

    We need to talk about it more on what autism looks like for women. Especially those who may have masked most of their life. Just because we have learned how to navigate things doesn’t mean we’re done. Or that we will continue. Anxiety/stress/ptsd/all these things that I can now see as my autistic identity get covered up in separate categories

    1. I’m so sorry to hear about your loss.

      You’re right that women have needs even if we are good at masking. Masking takes such a toll on mental health. I’ve noticed that I’m so much more relaxed when I can open up about my autism around other people. Being open improved my quality of life, even if it’s only with a few trusted people. People can’t deny who they really are, and it puts a lot of stress on autistic women and girls to have to fake it so much.

  3. At least you did get diagnosed eventually. Children of my generation, regardless of gender, were not diagnosed as autistic unless they exhibited characteristics similar to the character portrayed by Dustin Hoffman in Rain Man, or were sufficiently non-social to the point where they were placed into mental institutions. And I suspect that this type of condition is more prevalent among boys. I wasn’t diagnosed as being autistic until I was 60, so had to find my own way in the world.

    As far as masking goes, I presume boys are “allowed” to be more nerdy than girls, and particularly in my youth, the ideal male was often considered to be the strong, silent loner – think of the many heroes and super-heroes of the 1950s and 1960s. I was simply a quiet loner and preferred my own company to that of others. This was an almost acceptable “male characteristic” but I suspect if a girl exhibited such characteristics, there would have been much more pressure applied to fit in.

    Unfortunately, in the society I grew up in, while being the strong silent type was acceptable, being otherwise “different” was dangerous if one was male. Physical assaults were considered “character building”, and was often used to bring boys into “acceptable” behaviour. I quickly learnt the necessity of masking as being set upon by an unruly group of my peers was always a painful and bruising affair.

    I simply assumed everyone masked (although I didn’t know there was a word for it then), but others did it more successfully and didn’t slip up as I frequently did. After 60 years of social conditioning, I find the habits that I acquired to protect myself very hard to put down, but I’m working on it. Yes, I still fear letting my mask drop in any social gathering, and even after all this time masking hasn’t become any easier. In fact, I think it becomes more difficult to maintain simply because when you’re my age (70) masking requires just as much effort, but we have less available in resources, mentally and physically to apply to it.

  4. I wonder… how is this possible that we are literally shouting about this and science doesn’t hear it/discredits it… and then, in 10 years, someone will make the great ‘hallelujah’ discovery… and we’ll be on to the next thing that has been so ridiculously ignored.

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