The Need for Better Ways to Identify Girls with Autism

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“Are there any concerns with these?” I asked the nurse as I held baby Cate, preparing for her vaccinations.

The nurse filled me on the possible side effects and then added, “That’s it.  The only other concern you have when your child gets their shots is if they don’t cry.”

Catelyn got her shots.  She didn’t flinch.  Didn’t bat an eye, didn’t cry a tear.  Where Bobby would have fallen over in dramatic sobs, Catelyn sat stoic as a statue.

“Ummm, she’s not crying.”

The nurse just shrugged, “You’ve got a tough one there!”

(Things have changed of course.  Cate has seen enough scary shows that have involved a needle that she cringes when she sees one coming at her these days.  Although, she still doesn’t cry.)

When I look back, I see some of the things that stood out with Cate, getting her shots was one of them.

Her development was typical.  Just dotted with some of these oddities that left me a little puzzled.

Today, I got caught on an internet scroll.

As I scrolled, I got baited by a title.

“Don’t Overlook Autistic Girls”

I read that article, found here which also detailed the following information about girls with autism:

The study, led by the Children’s National Health System, found that autistic girls are often flying under the radar, undiagnosed and untreated, because their symptoms are different. Specifically, girls tend to camouflage their social deficits better than boys. They can be more aware of what social interaction should look like. They often strain to fake it, to appear “normal.”

So, what was the study?  I found that the Children’s National Health System did a study and discussed the findings on their website titled:

Girls Social Camouflage Skills May Delay or Prevent Autism Diagnosis: Study adds evidence to growing belief that current clinical tools fail to capture unique autism presentation in females.  January 4, 2018.

The study information can be found here, a brief excerpt from the abstract of the study reads as follows:

What About the Girls? Sex-Based Differences in Autistic Traits and Adaptive Skills

There is growing evidence of a camouflaging effect among females with autism spectrum disorder (ASD), particularly among those without intellectual disability, which may affect performance on gold-standard diagnostic measures……Overall, the findings suggest that some autistic females may be missed by current diagnostic procedures.

 

In the past, girls were diagnosed only if their symptoms were more severe.  According to Scientific American, in their article  (found here) the author points out:

“Autism – It’s Different in Girls”

“…if boys and girls had a similar level of such traits, the girls needed to have either more behavioral problems or significant intellectual disability, or both, to be diagnosed. This finding suggests that clinicians are missing many girls who are on the less disabling end of the autism spectrum, previously designated Asperger’s syndrome.”

 

I had questioned this notion in a previous post.  If the statistic is currently that boys are 4 times more likely to be diagnosed with autism than girls, could there be something on the diagnostic end that is overlooking the female population when it comes to diagnosing autism?

And let’s just be clear – why the need for better ways to identify girls with autism?

If girls are being overlooked because they are not meeting the diagnostic criteria that is fitting 4 times as many boys, then they are not getting the treatment they need. 

In our situation I took Catelyn in for help when she was 8 years old because she had become depressed.  Thankfully, the therapist picked up on autism right away.  She told me that yes, Catelyn was depressed, but that her depression was a buildup of the stress she was experiencing related to autism.  Cate would be treated for autism spectrum disorder.  She would get support and learn about herself and others – she would feel better and work through her depression.  And she does!

But what if we could have picked up on what Catelyn was experiencing earlier?

I am excited to see if and what changes will be made to the diagnostic criteria for autism based on gender differences.  I am excited to find more information is available about these gender differences.  I was even excited to recognize that others are trying to get the message out as well.

Remember that post I did about Julia, the muppet with autism on Sesame Street?  Well, as I scrolled again today I read that the decision to make Julia a girl with autism was done with a purpose: to draw awareness that there are girls on the autism spectrum and what autism may look like in girls as well.

The information is getting out there – which I think will continue to lead to more awareness of the autism spectrum and of gender differences as well!

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11 thoughts on “The Need for Better Ways to Identify Girls with Autism

  1. Sometimes I’m actually really thankful that there is no grey area, no question about Ben being autistic. He faces greater challenges but we don’t have to fight as hard to get the help he needs. No one thinks he’s just a bratty, misbehaving child.

    It’s great that doctors and researchers are looking closer at girls on the spectrum. Not to go off on a political tangent, but girls have a hard enough time in our society. Missing out on help and support because of a missing diagnosis just makes things harder.

    1. I think it is great that they are taking a closer look at girls on the spectrum, too. One of the analogies that I read referenced how heart attack symptoms for men are different for women – and they didn’t pick up on those differences for a while. So a lot of women and doctors thought they were fine, when in fact they weren’t. I am glad they are noticing the gender differences on the autism spectrum as well. I agree, girls do have a hard enough time in our society – picking up on these differences will hopefully help.

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