Autism’s Lost Girls4 min read

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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  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. Author

      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. Author

      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.

      1. Agreed. Faking is so hard. My mental healthy got worse as I got older with it…anxiety mostly. But I have that core group I can express to.

  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.

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