Ok, I'll confess...I wrote this a year ago, and this week I had too much to do to write something new, so I'm reposting.
BUT>>> I just learned something new!
The autistic community is saying that "people who learn to mask earlier present differently", since most men who are diagnosed late seem to have the exact "female" presentation of autism too... (and yes, I stole this quote directly from a comment on my TEDx talk. Fascinating, and makes a lot of sense....)
That said: Here's what I wrote a year ago. I'll follow up with more info on autism next week:
I must admit, in the past few days I’ve fallen into my favorite rabbit hole: Research. This time around it’s girls on the autism spectrum, and WOAH, I’m kind of mind blown.
There is not a lot of solid research out there, but there is a lot of information, and even more questions.
In this post, I’m going to focus on “high functioning” autism, what was formerly called Aspberger’s and is now called autism spectrum disorder Level I. This post is not meant to be exhaustive; in fact, it’s quite the opposite. I will outline the main details, discuss possible next steps and leave you with a list of resources for further reading, watching or contacting.
To start: high functioning autism (from herein I’m just going to say autism) in girls looks VERY DIFFERENT than in boys. In fact, the difficulty with this difference is that autism in girls is very often missed...and professionals at this point have no idea how often it’s missed because there is not enough research.
Why the lack of research? Because what we typically think of as autism is more prevalent in males...that repetitive, stuck on one topic, lacking social understanding/awareness, hand-flapping type of behavior is what stereotypical autism in MALES looks like. But guess what? It doesn’t look that way in females. So, scientists and researchers have often taken data on males, and not noticed the females, because it was assumed that autism in females looked the same (which it does, sometimes).
But not always…
I mean, let’s think about the stereotypes for typically developing boys vs girls for a minute…
Boys are loud, not as emotional, like cars and trucks, enjoy physical play and are emotionally less mature than females. Girls are quieter, more emotional, like dolls and nurturing, are less physical in play and are emotionally more mature.
Well, here’s the part that’s been missed: It’s the same in autism.
Girls with autism can appear totally normal, or at least basically totally normal. Girls with autism tend to “mask” their symptoms, meaning they hide them. They learn the social rules, don’t necessarily have a difficult time with eye contact, want to have friends, enjoy playing with toys in typically acceptable ways and can have a give and take conversation without difficulty. Some of this is inherent, and some of it is learned. They naturally want to be social and have friends, so they compensate by learning the rules for making friends.
And this works out pretty well...generally...until right around puberty, when the social “rules” for girls get more complex, and possibly even the “rules” for personal care (bra, regular showers, deodorant, etc) become more significant. Often it’s around this time a girl with high functioning autism will start to really show their difficulty. She might lose friends, become more anxious, show signs of depression or even develop eating disorders (recent research shows that Anorexia is somewhat common for girls on the spectrum, possibly because it’s a tangible number for them to regulate or possibly from anxiety or both).
There are so many nuances, it’s difficult to diagnose. And, the tests that have been developed to assess autism are based on the male presentation of traits, which means females are often missed there as well.
Interestingly, brain scans of girls with autism vs typically developing boys at the same age look very similar...suggesting that the social part of a typically developing boys brain is the same as the social part of a girl with autism at the same age...whereas a typically developing girl at the same age would have more activity in the social area of their brain, and a boy with autism at the same age would have far less.
The prevalence of autism is thought to be at least 3x more common in boys than in girls. According to AutismSpeaks.org, in 2020 1 in 34 boys were identified with autism, as opposed to 1 in 144 girls that were identified with autism. Most children aren’t diagnosed until after 4 years old although they can be reliably diagnosed at 2 years of age. Girls are often not diagnosed until much later, and frequently go through several diagnoses before being identified as having autism. Most commonly, they are diagnosed with ADHD, and then roughly 4 years later they get the diagnosis of autism. The missed diagnoses can lead to not only lack of intervention (particularly early intervention) but also anxiety, poor self esteem and increased isolation.
There are so many questions, with answers only just beginning to surface. One question I have is: how many undiagnosed females are there out there, and how will this affect the prevalence? If autism really is as rampant as this may suggest, perhaps our world needs to adapt to our children rather than the other way around. Even without a diagnosis we can give support to our girls that have anxiety, social isolation or other issues (maybe stemming from autism and maybe not). However, the quest for a proper diagnosis can be very important and helpful for not only the individual with autism but also the family, and it can help provide more diagnostic information to improve what is known about autism in girls, including research and testing guidelines.
So...what to do? Well, if you have questions about autism and your daughter, start with your pediatrician. If they don’t have an answer, contact an autism advocacy group (can be found online and listed in resources below). You can also ask your daughter’s school...begin with the teacher (or the special education team if she is already on an IEP or 504). Be prepared to be prepared...meaning: bring information with you. What we’re talking about is a fairly new way of looking at autism, and it may not be widely acknowledged. So bring articles, examples, questionnaires (all outlined in resources below) and be prepared to not take a simple no for an answer. Diagnosing can be the hardest part, but that’s a whole other post…
Check out this handy reference, posted by the MindInstitute in Sacramento, Ca:
Further Reading (articles):
Videos to watch:
Books to Read:
Women and Girls with Autism Spectrum Disorder: Understanding Life Experiences from Early Childhood to Old Age
by Sarah Hendrickx, Judith Gould
Girls Growing Up on the Autism Spectrum: What Parents and Professionals Should Know About the Pre-Teen and Teenage Years
by Shana Nichols
Camouflage: The Hidden Lives of Autistic Women
by Sarah Bargiela, Sophie Standing (Hardcover)
Spectrum Women: Walking to the Beat of Autism
by Barb Cook, Michelle Garnett (Paperback)
Autism Advocacy Groups: