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How Misdiagnosis Can Become a Nightmare for Girls on the Autism Spectrum

Textbooks tell us autism spectrum disorder (ASD) is four to five times more prevalent in boys than girls. I never have been one to believe everything I read. I keep meeting young women, new ASD diagnosis in hand, whose childhood stories 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 with ASD.

Oh sure, they were told they had ADHD, ODD, OCD, GAD… and later, anorexia or bulimia. They cut themselves and starved themselves — but it was all just for attention and control, don’t ya’ know!

And when they retreated, with great enthusiasm, to the comfort, company and acceptance of the elaborate fantasy worlds they created — more labels: schizophrenia, bipolar or immature.

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.

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,” or, “Obviously, if she won’t, it is because she can’t.”

And because she was often precociously verbal and would not ask for help or say she didn’t understand something, teachers said she was just fine and cast a stunned look when told the student is trashing her house when she gets home.

“What’s going on in the family to cause that behavior,” 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 lack of understanding, 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 girls with autism? Maybe because many ASD characteristics that make parents frantic when seen in boys raise no red flags in girls.

Consider:

1. Shyness is a feminine trait, so is no cause for alarm for many parents and teachers

2. Clumsiness and difficulty with team sports is the same. Parents seem to value athletic, rough and tumble sons, but no one’s freaking out if their daughter isn’t interested in playing soccer or lacing up skates.

3. Anxiety? There’s 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? When our girls cry easily and often, the behavior is dismissed without concern because, well, girls can be sensitive or dramatic, you know (sigh). These are not words most parents like to use when describing their male children.

5. Girls on the spectrum tend to try harder to fit in socially, and can become skilled at copying behaviors in order to fit in. Many have a friend (it is maintaining relationships that can be a challenge).

6. Like boys, girls may do things with their hands and fingers, but often, that involves twirling their hair. Cute, right? Suffice to say, it certainly doesn’t make most parents cart her off for an assessment, though this is classic sensory behavior.

7. The special interests of many girls on the spectrum are similar to typical children: horses and cats in particular, animals in general, social justice, Cosplay, Japan, or celebrities. The difference is the time spent on the interest and the intensity of the interest.

Regardless of the reason, girls have suffered from not knowing that many of their challenges did not come from being “lazy” or from being inherently “broken” or “naughty.”

An autism diagnosis could have prompted the support they needed with things that were difficult, and encouraged the cultivation of their areas of interest so they could be great at something.

I cannot change the past but I’ll tell you this: I am on high alert when it comes to spotting these often-brilliant girls.

Any time I meet a mother who already has a child with autism, a funny thing happens when she tells me her “typical” daughter is very anxious and defiant… or anxious and shy… or anxious with ADHD… or just anxious. My A-DAR goes haywire and the questions come 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?

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 may 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 relief and 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.

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 girls and ASD.

A version of this story originally appeared on Autism Goggles.

Getty image by PhenomArtlover