Why It's Harder for Girls to Get an Autism Diagnosis
According to the Centers for Disease Control and Prevention (CDC), autism is four times more common in boys than in girls. The autism community, however, debates the accuracy of this statistic. Is autism more common in boys? Or are boys more likely to be diagnosed?
Until relatively recently, researchers and experts didn’t do a great job recognizing how autism can look different in girls, causing far fewer diagnoses.
As a result, an unknown number of girls and women on the spectrum may go undiagnosed or receive a diagnosis later in life, restricting their ability to get the resources they need to support their well-being. Now, largely thanks to the advocacy efforts of actually autistic women, that’s starting to change.
How Is Autism Different for Girls?
Julia Parish-Morris, Ph.D., a scientist at the Center for Autism Research and faculty member at Children’s Hospital of Philadelphia, said one of the biggest differences researchers found between boys and girls on the spectrum is “behavioral camouflaging.” Also called masking, many autistic girls learn to hide their autism traits so they can “weave” in and out of their peer groups and adapt to the social surroundings.
“What we’re finding is that girls can fly under the radar, and it happens in a bunch of different ways,” Parish-Morris told The Mighty. “They tend to look more at faces than boys. They tend to speak more about social topics than boys. They tend to narrate in ways that are more typical of typical girls than boys with autism, but there are critical ways that they overlap.”
Parish-Morris demonstrated one of these differences in her research on narration and autism. In a study published in March in the journal Molecular Autism, researchers measured narration and storytelling language among autistic boys and girls compared to typical boys and girls. Study results showed autistic girls and typical girls used similar numbers of “cognitive process words” like “think” and “know,” while autistic boys used significantly less.
Autism can’t be diagnosed using a medical model lab test, so family members, teachers, experts and autistic people rely on behaviors they see or feel to make a diagnosis. Girls might look like they are adapting socially similarly to their typical peers compared to autistic boys who more often experience isolation, a marker used to diagnose autism. As a result, girls aren’t even referred for an autism evaluation.
Though autistic girls may look like they’re engaged with their peers, it may not feel that way to them. Mighty contributor Lauren Alex Hooper explained how it felt to grow up not knowing she was on the spectrum in her article, “We Need More Awareness of Autism in Women.” Hooper wrote:
I never felt like I quite fit in anywhere. I felt like I was stuck behind glass, separated from everyone else and unable to break through it. Everything seemed so much easier for everyone else; everything they seemed to do effortlessly took all of my energy, leaving me exhausted. I couldn’t understand why I just couldn’t cope as well as everyone around me. For some unknown reason, I couldn’t function as well as everyone else and that made me feel like I was broken. Despite all of this, no one clocked that there was a problem, not a doctor, not my family, not me.
Why Aren’t Girls Being Diagnosed?
Hooper’s experience of not getting a diagnosis — and many people in her life not even considering the possibility — is not uncommon for girls and women on the spectrum. The criteria used to diagnose autism favors the way autism presents in boys and men.
Most evaluators will only diagnose girls with autism when they present with a lower IQ because otherwise, girls don’t meet enough of the “classic” male-centric autism symptoms. Boys are more likely to receive an autism diagnosis regardless of their IQ because they fit enough of the other autism symptoms. Parish-Morris said the criteria favors boys because girls are mostly absent from autism research.
“Most of the research that was conducted was in boys,” Parish-Morris said. Even when studies look at both genders, there are usually far fewer female participants. As a result, autistic girls are compared to autistic boys when they should be compared to typical girls. This change would provide a more accurate picture of the autism spectrum in women.
Gender role socialization also can’t be ignored in the context of autism. By age 3, children begin to express their gender identities, which are influenced by the world around them. Girls are generally raised (or learn) to prioritize social connection and relationships, which may put more emphasis on the importance of social masking for young women. Parish-Morris said research hasn’t considered transgender, non-binary or gender non-conforming folks yet.
The influence of gender roles socialization factors into why research misses girls on the spectrum as well. For example, a 2014 study looked at differences between young males and females on the spectrum. Researchers found that autistic girls showed less hyperfixation on specific interests. However, as Scientific American pointed out, examples of interests used during diagnosis often feature more stereotypical boy interests instead of a mix of gendered or non-gendered interests to better diagnosis girls.
Why It’s Important to Get an Autism Diagnosis
Actually autistic adult women report being misdiagnosed with other conditions such as obsessive-compulsive disorder (OCD) to depression, social anxiety, ADHD and other mental health conditions before getting their autism diagnosis.
While autistic women can have more than one diagnosis, in many cases, doctors missed autism and ascribed a pathologizing diagnosis instead. Mighty contributor shared what it took for her to get the correct diagnosis in her article, “Why It Took 19 Years for Me to Be Diagnosed With Autism.” She wrote:
My psychiatrist basically said that ‘girls do not get autism’ and that I didn’t have autism ‘because I cried when my Granny died.’ He decided that I had a personality disorder instead, but not which one. I have come across a lot of girls later diagnosed as autistic who were given a personality disorder diagnosis earlier in life.
The cost of masking neurodiversity, especially for long periods, takes a toll on autistic women. Research has shown people on the spectrum who camouflage their autistic traits report feeling physically, emotionally and mentally drained. In one 2017 study conducted in the U.K., many autistic adults surveyed said after masking, they needed serious time to recover.
“[Masking is] associated with things like more risk of anxiety and depression,” Parish-Morris added. “As you get older, feeling like you can never really be your authentic self, you’re always having to put on a show. And at the same time, those behaviors that save you a little bit socially also make so you’re not getting access to the services and supports that you deserve. It’s this double-edged sword.”
And, of course, missing girls on the spectrum means they do not have access to early intervention resources or support. Many autistic women grew up thinking there was something wrong with them, emphasized by misdiagnoses that focused on a “fix.” Early intervention can provide a pathway for young autistic women that honors their neurodiversity and put supports in place to make the world they live in a little more accepting.
Mighty contributor Abby Thomson encapsulated this in her article, “How Getting My Autism Diagnosis Helped Me Find Myself,” writing:
Because of the lack of diagnosis, I was most commonly known by my peer group as a ‘weirdo.’ I was interested in different things, different music, a different style of clothes. I had what I now know as ‘special interests,’ most of which were obscure and nobody could relate to them. I had severe anxiety throughout my childhood. Looking back, I can now put this down to autism, but it was so scary not knowing why I felt the way I did for such a long time.
How to Get Support as an Autistic Woman
It’s only in the last 10 years or so researchers and experts began to realize they were missing many girls on the spectrum. That awareness grew largely out of the efforts of actually autistic women who wrote articles and books, started support groups, spoke at conferences and self-advocated in their personal and professional lives.
“A lot of the progress in this area has been driven by autistic self-advocates who are adult women,” Parish-Morris said. “Even after not being recognized and not being understood, these women just have incredible resiliency and are able to pull together and draw a lot of support from one another and really affect good change.”
Parish-Morris said some of the best resources about autism for women and parents out there have been created by actually autistic women. If you’re a female or parent a daughter and have questions about autism in girls, Parish-Morris recommended looking online for books, articles and support groups from women on the spectrum, in addition to checking in with up-to-date autism centers like the Center for Autism Research in Philadelphia.
To get you started, these Mighty articles written by actually autistic women have helped others in The Mighty’s autism community:
- Being Diagnosed on the Autism Spectrum in My 40s
- I’m Autistic and Proud to Be Who I Am
- 5 Autism Stereotypes I Would Like to Dismiss
- Why It Took 19 Years for Me to Be Diagnosed With Autism
- 10 Things Parents With Children on the Autism Spectrum Need to Know
What are your favorite resources from women on the spectrum? Share in the comments below!
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