6 Key Autism Differences in Women That Lead to Damaging Underdiagnosis Rates

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Autism differences in women is a topic I’ve touched on repeatedly in other posts. However, yesterday something infuriated me which made me think it’s time to dedicate a post to how autism looks different in women than it does in men. Autism presents differently across genders. ADHD and many other health conditions present differently between males and females. Why would autism be any different? Yet for some reason, this concept is entirely foreign to people. Unfortunately, this includes many people whose business it is to know.

I’m trying really hard to be patient with their ignorance. It’s not their fault they’re ignorant on this topic but also, it’s 2024. We have the internet and so much more research available so isn’t it kind of their fault? Okay, maybe not for the average person. But if you’re an educator or work in a field that is autism-heavy and don’t take time to learn about it? You’re making an active choice to remain ignorant.

And that’s the furious place of inspiration this post came from.

Autism Education in the Department of Education

I’m a legal scopist which is like a cross between a transcriptionist and a proofreader. I work for a company that does a lot of work for the Department of Education. For confidentiality reasons I won’t say which one but it’s a big city on the East Coast. Hoo boy can they be problematic. There is a lot of latent antisemitism for starters but that’s a rant for another time and place. Sure, maybe they have no reason to be better educated on Jewish culture. We’re a minority, I get it. You know what’s not a minority when your job involves determining supports for disabled students? Autism.

I have to be careful with how much detail I put here due to confidentiality reasons so I’m keeping things generic. Yesterday, I worked on a case that outraged me. A female student was diagnosed with autism at the age of 2. The DOE refused to classify her as a student with autism and insisted she has a speech and language impairment. They have not created an updated education plan for this student’s diagnosed needs since 2011 when she was in preschool. They have created education plans based on their insistence she has a speech and language impairment. However, they’ve failed to even provide those supports to this child for the condition the DOE claims she has.

Autistic Sense of Justice: Triggered

This student is now 15. Due to the DOE’s refusal to reevaluate this child, her parents sought (and paid out-of-pocket) for an outside neuropsychological evaluation. In this evaluation, the child was again diagnosed as (still) having autism. The DOE has continued to refuse to implement it and disregards it because the report. Their main reason cited for dismissing it? The report from the neuropsychologist doesn’t specifically list how many hours of Special Education Teacher Support Services the student should get. The report says she needs ABA methodologies implemented to be able to learn. Meanwhile, the DOE continues to claim she has a speech and language impairment.

The DOE said they had concerns about the methodology and conclusions of the neuropsychological evaluation. One of the assessments done was the ADOS-2, a standard autism assessment, that found she met the criteria for autism. A bit about ADOS-2: it’s been found to accurately identify autistic adults. There is an issue with a 30% rate of false positives for adults with psychosis. Again, this is a 15-year-old child with no history of psychosis. What is the DOE trying to imply with their claim that this assessment was inappropriate? The DOE countered that they conducted their own tests in 2022. Without naming any of the assessments used, the evaluator found her to be non-autistic. Why you ask?

Actual Things This Attorney Said:

• The report “paints a picture of a bright and engaged child”
• Child is more than capable of interacting with the evaluator
• Student is aware of her environment and social context
• She has skills that are more or less average for her age, particularly when it comes to test scores
• Child demonstrated “age-appropriate curiosity, verbality, and wit”
• Evaluator noted some verbal deficits, with average to above-average academic skills, and age-appropriate social skills

Autism Presents Differently in Women

I have a feeling that every autistic woman reading that list just got as angry as I was listening to him say it. Many, many autistic women went undiagnosed for decades of their lives because they are all of those things. We’re not obsessed with trains (for the most part). We do well in school. We can make eye contact. We’re expressive with both our tones and our faces. That’s why someone desperately needs to inform the DOE that just because a child doesn’t fit their stereotype of autism, doesn’t mean that child is not autistic. To help fight those stereotypes, let’s look at some of the ways autism looks different in girls compared to boys.

Less Obvious Repetitive Behaviors

Autistic people find repetition soothing which is why repetitive behaviors are common for us. Most people assume this means obvious flapping, rocking, or fidgeting habits. Girls are socialized to control our behaviors more than boys are so we learn to suppress things around others. We disguise our need for repetitive stimming behavior by rubbing a ring we’re wearing, twirling an earring around in its hole, running our fingers through our hair, or fidgeting with the fabric of something we’re wearing. Just because people don’t recognize the behavior as stimming doesn’t mean the autistic behavior isn’t happening.

Autistic Girls Are More Social

While we’re largely less social than our neurotypical peers, we do enjoy social interactions. We just need to socialize in manageable doses and require lots of downtime afterward. This can make scheduling social activities feel complicated for us. Girls are also more socialized than boys in terms of interactions so we tend to smile and make more eye contact than autistic boys. This isn’t just anecdotal either. A study done in 2022 found that autistic women present with less visible social impairments than boys. Another study found that the brains of autistic girls respond to social interactions differently than non-autistic girls while finding social interactions more rewarding than autistic boys.

Pretty Privilege

I know this one can be a bit controversial but I think it’s worth mentioning. There’s a conversation in the autistic community about pretty privilege and its impact on a missed diagnosis. We live in a world that favors good-looking people. This often results in people wanting to befriend you or getting a pass for certain things, to varying extents that are entirely context-dependent. In the case of autistic women, pretty privilege can result in autistic behavior being wildly misinterpreted. If a pretty girl says something blunt and unintentionally mean, people assume that she has a superiority complex or that no one’s taught her better because she gets by on looks. If a pretty girl’s behavior is a little odd, it’s just perceived as quirky, thus, the manic pixie dream girl fantasy was born. As long as she seems minimally social and passing grades, it’s hard for a teacher to flag any concerns.

Different Speech Patterns

In another recent study, researchers found that autistic girls have different speaking habits than boys do. This study analyzed spoken conversations rather than using standardized responses. The findings showed that autistic girls use plural personal pronouns (we, us, they, them) and social words (friends, family) almost twice as much as autistic boys do. These words serve a purpose and that’s to indicate social belonging. An autistic child may use such language while misreading the level of closeness with who they’re speaking about. To a one-time DOE evaluator, it would be difficult to catch that disconnect and easy to believe the child was doing better socially than they actually are.

Autistic Girls and Boys Play Differently

One of the early indicators of autism is how a child plays and engages with their environment. Autistic children (and adults) have a tendency to line things up while playing. Boys are expected to be a bit rough and tumble so it’s quite noticeable when an autistic boy spends most of his play time lining items up in a row. Comparatively, if an autistic girl is seen frequently lining up toy animals it looks like she’s setting up a farm scene. If she’s lining up Barbies, people assume every Barbie is getting a wardrobe change without realizing it’s because autistic children struggle with imaginative play and don’t know what else to do with Barbies. Additionally, research has shown that in settings like recess, autistic boys tend to play alone while autistic girls hover on the edge of other groups of kids and observe.

Autistic Women: Masking Experts

Many autistic women with average or above-average IQ end up using their intelligence to observe and assess those around them. This allows them to develop coping mechanisms and how to imitate others. This doesn’t mean that internally we feel differently than male autistics in similar situations. We don’t become less autistic, we just learn how to mask. Autistic women learn to fake small talk even though we hate it. We learn to act how we’re expected to act because that’s what society expects of women and it’s harder on us when we don’t fall in line. This doesn’t mean we’re not autistic, the way that DOE attorney seems to think. We’re definitely still autistic and we’re definitely exhausted from having to put more energy into keeping up with day-to-day life.

Autism Differences in Women and Underdiagnosis

Between the differences in communication, speech patterns, and socialization there are plenty of reasons to blame for why so many autistic women go undiagnosed until adulthood. Almost all research on autism into the ’90s was almost entirely focused on males. In my opinion, that means we can also blame some sexism among the researchers and not just inherently blame it on the autistic women whose symptoms had the audacity to present differently. For generations, it was easier for medical professionals to label autistic women as hysterical, bipolar, or as having borderline personality disorder than it was to consider they were autistic.

I think another factor related to sexism when it comes to the underdiagnosis of autistic women is how people talk about hormones. I think every woman has some kind of trauma from growing up and having feelings or concerns dismissed as being ruled by hormones. If a pre-teen or teenage autistic boy has a meltdown, so many parents try to get to the source of what could be making him act so illogically. If an autistic girl has the same reaction, it’s dismissed as hormones and the endless mystery that is women. *waves fingers witchily*

Why It’s Important to Know Autism Differences in Women

More people, especially those who work in related fields, should be taking the time to understand autism differences in women. Without that diagnosis, many undiagnosed women develop anxiety, depression, eating disorders, and low self-esteem. Having a diagnosis is a life-changing (and often life-saving) framework to have. Without it, you have a stomach-wrenching number of women who have been misdiagnosed, institutionalized, had eating disorders go untreated (or treated incorrectly), pushed on medication that they don’t need, or end up in abusive relationships

If you haven’t read it yet, Autism in Heels has a very insightful chapter about the preponderance of eating disorders among autistic women. It really drives home the point that by failing to understand what autism looks like in women, we are quite literally letting many of them die or get horrifyingly close to it before someone finally takes a different approach. You can find my review of Autism in Heels here.

Doing Better by Autistic Women

The reality is that there are even structural brain differences between autistic women and autistic men. I’ll stick to my current rant for now but if you want me to do a breakdown of that research in a separate post, let me know in the comments. The fact of the matter is that society needs to be doing better by autistic females.

Do I expect every DOE attorney to be an expert on autism? No. But if they’re going to be arguing whether a child deserves services for a diagnosed condition, they should at least know the basics and not just stereotypes left over from the ’80s. And while I may give a minor pass to DOE attorneys, I sure as shit do not give one to the DOE evaluators whose literal job it is to know these things before making decisions that will impact that child’s entire life.

This also has to do with generational cycles. With high heritability rates, autism tends to run in families. An autistic mom needs different supports and tools than a neurotypical mom does. If that mom is undiagnosed and not working with the right framework, at the very least they’re going to have a very dysregulated household. At worst, emotional neglect or even abuse could happen. Undiagnosed parents may also unknowingly delay their child getting a diagnosis because the behavior seems normal to them. Now you have another generation of children being dismissed and not getting the support they need.

Bringing Awareness to Autism Differences in Women

Personally, I am exhausted from the widespread ignorance regarding the gender differences in autism. Help me fight these stereotypes by sharing this post with a friend (and maybe some DOE attorneys if you know any.) Together we can be (even more) argumentative and use our love of correcting people for good. If you have your own story of mind-blowingly ignorant “you can’t be autistic, you’re a girl” stories, please commiserate in the comments!