08/07/2025
Autism Goggles
The Painful Path to Autistic Identity for Autistic Women
**the experience discussed in this post is not strictly binary. While women have suffered for decades with many misdiagnoses, so, too, have boys, men, and transgender girls who don't fit the entrenched stereotypes and white male bias.**
Though textbooks still tell us autism is four to five times more prevalent in boys than girls, I never have been one to believe everything I read. Current research suggests the prevalence of Autistic girls to boys is less than to 2:1.
I keep meeting young women, middle aged women and senior women, new autism diagnosis in hand, whose journey to diagnosis would read like sequels to 'One Flew Over the Cuckoo’s Nest': they were medicated, hospitalized, removed from regular schools, and placed in 'treatment' facilities, abused, bullied...but never diagnosed accurately. At least not as Autistic.
Oh sure, they were told they had ADHD, ODD, OCD, GAD, BPD...and later, anorexia or bulimia. They cut themselves and starved themselves-- but it was all just for attention and control, don't ya know (**sarcasm**)!!
And when they retreated, with great enthusiasm, to the comfort, company, and acceptance of the elaborate fantasy worlds they created--more labels: Schizophrenia. Bipolar.
What a shame. They endured both home and school without accurate consideration of their sensory or academic profiles. When the social and academic expectations overwhelmed them, things started to fall apart. Girls work hard to mask, mimic, and camouflage to fit in, and it takes a toll.
Meltdowns, if they didn’t happen at school, most certainly occurred when she walked through the door. Often, they did happen at school, where she was quickly labelled ‘trouble’ with a capital ‘T.’
She wouldn’t do her work because she couldn’t (teaching pace is too fast and homework load is too heavy), and rarely did the adults say, “if she won’t do this, there is something we haven’t taught her yet.” They never figured out that if she won’t, it is because she cannot—yet—because her learning needs were not met.
And because she was often precociously verbal and would not ask for help or say she didn’t understand something (as Autistic girls and women, we are notorious for being unable to reach out for help), teachers said she was just fine and cast that stunned Eddie Murphy-look when told the student is trashing her house when she gets home. ‘What is going on in the family to cause that behaviour, because she’s just fine in my class’ is most often the offensive response.
Or my personal favorite: ‘Perhaps you need to look at your parenting?’
We cannot reclaim the years that were lost to ignorance but we can hope that with self-awareness and support, some of these women will be able to reclaim their lives. In the meantime, though, we need to take another look at how girls are identified in order to avoid the pain for the child and the collateral damage in families as parents watch their child struggle.
Why, though, are professionals missing and misdiagnosing so many Autistic girls (and males or non-binary folk whose expressions of autism dont fit the stereoypes)?
Maybe because many of the Autistic characteristics that make parents frantic when seen in boys raise no red flags in girls. Consider:
1. Shyness is a considered feminine trait, so is no cause for alarm for many parents and teachers
2. The clumsiness and difficulty with team sports—same. Parents want their sons to be rough and tumble and athletic skill is highly valued, but no one’s freaking out if their daughter isn’t interested in playing soccer or lacing up skates.
3. Anxiety? There is far more tolerance and acceptance of girls who demonstrate anxiety or are ‘high strung’ than there is of boys. Society is alarmed when boys quake and cry with fear or panic. Not so much with girls.
4. Emotional dysregulation? No need to even write it out: when our little girls cry easily, they are ‘sensitive’ or ‘high strung,’ or drama queens.’ These are not words most parents like to use when describing their male children.
5. Autistic girls tend to try harder to fit in socially, and can become skilled at copying behaviours in order to fit in. This contributes greatly to falling through the cracks.
6. Like boys, girls may do things with their hands and fingers, but often, that involves twirling their hair. Cute, right?! Well, suffice to say it certainly doesn’t make most parents cart her off for an assessment.
7. The special interests of many Autistic girls are like typical girls: horses, animals, celebrities, anime, YouTube. The difference is the time spent on the interest and the intensity of the interest.
Regardless of the reasons, girls have suffered from not knowing that many of their challenges did not come from being lazy or from being inherently ‘bad.’ An autism identification could have given them the support they needed with things that were difficult and encouraged the cultivation of their strengths and interests so that they could be great at something.
I cannot change the past but I will tell you this: I am on high alert when it comes to spotting these often-creative little girls.
Any time I meet a mother who has an Autistic child, a funny thing happens when she tells me her other child—a daughter-- is very anxious and defiant...or anxious and shy...or anxious with ADHD...or just anxious. My A-DAR goes haywire and my questions begin in rapid-fire:
Does she reaaaaallllly love animals; love to draw/doodle/create repetitive designs/ love anime art; love graphic novels; have difficulty falling asleep at night; have issues with food; have a lot of anxiety around school (even if she’s a brilliant and successful student); have a hard time getting it together in the morning; have an eating disorder (nearly 30% of anorexic women are Autisticor have high Autistic traits).
If the answer to most of these questions is a bewildered ‘Yes,’ more traditional autism-related questions may follow and if they evoke similar responses...off they go to begin the whole assessment journey again.
Worth it? I’d say. For most of the women who have sought a diagnosis, it has given a great sense of self-awareness.
Now they have answers: why emotions can be so intense; why they have so much anxiety; why there is always the feeling of being different, of being outside of the group, not part of it; why they are compelled to find mistakes (not their own, of course, because that just hurts) and make sure to point them out; why they feel so misunderstood; why they are so disorganized; why they can never start something; why they keep endless lists and then get overwhelmed by them.
With knowledge comes power. Now that they know, they can find strategies for the things that are hard and celebrate the things they are so great at. And importantly, they can find support and community within the Autistic culture.
Here’s wishing for accurate and timely answers for all of our girls whose particular mix of character and charisma will ultimately bring them an autism diagnosis...and that someone rewrites the book to reflect the unique presentation of Autistic girls in a way that allows clinicians to easily identify them.
One last and important point: If you're considering autism as you look for answers, do your pocketbook and your daughter a favour and find someone who specializes or has expertise in the profle of girls, teen girls or women on the spectrum. It can make all the difference.
