“I don’t think there’s an epidemic [of women being diagnosed with autism],” Catherine Lord, PhD, a professor of psychiatry at the David Geffen School of Medicine at UCLA and co-developer of the assessment tool known as the Autism Diagnostic Observation Schedule (ADOS), tells SELF. “I think we’re just getting better at identifying people, and people are also seeking this diagnosis, which they wouldn’t have 50 years ago.”
Megan Anna Neff, PsyD, a psychologist and founder of the educational platform Neurodivergent Insights, was diagnosed with autism as an adult after seeking a diagnosis for her child; a common path, she says. (It’s a topic that comes up a lot on Reddit.)
With profound autism—severe intellectual disabilities or being non-verbal, for example—girls may be slightly more likely to meet autism criteria, but on the other end of the spectrum, there hasn’t been a great understanding of what autism could look like in females. For example, autistic girls tend to be more verbal, Wendy Ross, MD, director of Jefferson’s Center for Autism and Neurodiversity and advisor for the Autism Society, tells SELF. This could ultimately influence whether a young girl fits the diagnosis based on standard screenings for the disorder.
Long before the ADOS-2—the updated version of the ADOS that is often considered the gold standard tool for autism diagnosis—was commercially available in 2001, “the tools that we were using weren’t looking for people that were verbal,” says Dr. Ross. They also weren’t really looking for girls. “Typically boys are more commonly affected by almost all neurodevelopmental disorders,” Dr. Lord says. “People just had this preconception that it didn’t happen in girls.”
Additionally, most medical research in autism has been done in children—specifically white boys, says Dr. Ross, and ASD has generally been shown to be nearly four times more common in boys than girls. Boys also may have more overt, easily identifiable behaviors that point to autism, such as flapping or looking out of the corner of their eye, Dr. Lord says.
Yet, missing autistic women may also come down to societal norms and expectations, Maura Sullivan, CEO of The Arc of Massachusetts, a group that works to enhance the lives of people with intellectual and developmental disabilities and autism, tells SELF. “We really teach girls from a young age to mask behavior that isn’t as ‘appropriate.’”
It’s well-reported that girls with autism—specifically those without severe intellectual disabilities and with high verbal skills, are more likely to have learned to “mask”—or watch a situation and almost role play or adopt the behaviors of others—and perhaps, be missed by diagnosticians because of it. Because of masking, “theory of mind,” or innately taking the perspectives of others—often impaired in people with autism—can also be easier to miss in girls, says Dr. Ross. (Struggling with theory of mind might look like not easily understanding that something you said hurt someone else’s feelings, but understanding it if the person explained to you exactly what happened.)
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