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Gender norms may lead to women and people assigned female at birth being misdiagnosed
Past estimates have shown that boys and people assigned male at birth (AMAB) are four times more likely to be diagnosed with autism spectrum disorder than are girls and people assigned female at birth (AFAB).
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Why is that? Are there genetic factors that somehow make boys more vulnerable to neurodevelopmental disorders?
Perhaps.
But, as scientists are discovering, there may be more to consider.
As we learn more about autism, we’re also learning that it affects people differently. That’s one reason people with autism are now diagnosed as being on a spectrum. It’s an acknowledgement that there are different levels and severities to an autism diagnosis.
What’s more, the stereotypes we associate with gender may affect the way children’s symptoms manifest. And those same stereotypes can affect the way that parents, caregivers, teachers and others perceive a child’s behaviors.
That is to say that as a society, we expect (and accept) certain behaviors from some children but not others. And those expectations are highly gendered.
With that in mind, it seems likely that girls, women and people AFAB may well have higher rates of autism than we realized in the past. That’s because they may not always display the typical behaviors we’ve long associated with autism spectrum disorder. And when they do show signs of autism, they may not get the help they need.
“Anyone can be affected by autism — it just affects people differently,” says pediatric psychologist Meagan Adley, PsyD. “The more we learn, the more it seems that people are being overlooked, misdiagnosed or diagnosed later, and in turn miss out on the support they need. And gender can be a big factor in who gets diagnosed and who doesn’t.”
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We talked with Dr. Adley about how biological sex, gender roles and gender stereotypes affect girls with autism.
The symptoms of autism are relatively consistent across the sexes. It’s not necessarily that people who are biologically female or male have different symptoms of autism.
But gender norms can impact how their challenges are perceived by others. And gender expectations may influence how people with autism attempt to mask their social differences. More on that in a bit.
Dr. Adley says when behavioral health specialists work to diagnose a child with autism, they look for certain signs and symptoms, like:
Dr. Adley explains why.
There isn’t a definitive test for autism. Instead, healthcare providers use specialized evaluations and screenings that consider the ways people interact with others and with the world.
Those screenings were developed largely based on research done on cisgender men and boys with autism. And some researchers are suggesting that those screenings aren’t always sensitive enough to account for the ways autism manifests in cisgender women and girls.
Let’s break that down.
Sex assigned at birth, or biological sex, is a designation based on the genitalia people are born with, such as male or female. Gender refers to the social and cultural ways people express their identity.
In our society, gender has traditionally been viewed as a binary (woman or man), but there are countless gender identities. When a person’s gender aligns to their sex assigned at birth, it’s called being cisgender.
We (consciously or not) may hold children accountable to different expectations of behavior and interests based on an assumption of being cisgender. Dolls for girls. Trucks for boys. Obedience and sensitivity for girls. Rough-and-tumble assertiveness (even aggression) for boys.
Those expectations and stereotypes affect how we view children’s behaviors and make determinations as to what constitutes healthy childhood behavior.
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Recent research has suggested that girls with autism may be under-identified or given another diagnosis, such as anxiety or ADHD, because their symptoms can be easier to miss.
For example, consider a young girl who dutifully organizes her dolls from tallest to shortest repeatedly. She can’t sleep with her dolls out of order. In a parent’s mind, she may be perceived as being tidy, thoughtful and quiet. All positive, gender-affirming traits.
If a young boy consistently lines up his cars by size and worries when one of them is out of place, his parents may be more likely to question his behavior. They may wonder why he plays alone or doesn’t prefer to play demolition derby with his toys “like the other boys.”
In both cases, the children are engaging in activities that may be typical of a child with autism — a repetitive behavior. The difference is the parents’ view of their behavior. The parents of the young girl are satisfied with her behavior, while the parents of the young boy question it. And that’s based entirely on the gendered expectations they (and society) place on children.
“People often unconsciously hold on to beliefs from their own upbringing or from cultural norms about what is expected of children based on what we assume is their gender or gender identity,” Dr. Adley explains. “And the effects of that go far beyond the toys we buy for them or the ways we intervene when their behavior is thought to be unusual.”
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Eventually, those gendered expectations may lead the boy’s parents to seek medical attention, while the girl’s parents don’t see the behavior as a potential sign of autism.
As a result of social conditioning and cultural norms, girls may be more likely to engage in what researchers have called social camouflaging. That is, they may be more likely to try to blend in so as not to draw attention.
“This can especially be true for girls with higher-functioning autism who don’t show intellectual impairment,” Dr. Adley says. “Research suggests these girls may show more social interest. And any repetitive behaviors or restrictive interests may be less apparent. It can be more difficult to notice and for healthcare providers to diagnose.”
For example, kids with autism tend to prefer to play alone, rather than engage in group activities. Girls in the study, however, were more likely to attempt to “mask” their social challenges. They would still play independently but stayed closer to the group. Or they would “weave” in and out of play. The boys, on the other hand, would play solo while staying farther from the group. That made it more apparent that they were isolating themselves from the other kids.
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Additionally, girls with autism may be more likely to be aware of their social difficulties and work very hard studying how other girls interact to try to fit in. And girls’ restricted interests may also be missed because they are more likely to be age-appropriate interests, such as animals, princesses or celebrities, Dr. Adley adds.
Even if some kids with autism are able to “get by” or mask their difficulties in social situations, autism can still dramatically affect their lives. And they deserve help and support.
Autism is associated with a range of other medical conditions, including feeding conditions, poor sleep and epilepsy. And without treatment, like behavioral intervention or therapy, people with autism can also be more at risk for mental health conditions, like anxiety, depression or self-injury.
Parents and caregivers know their children best. If you’re concerned your child isn’t engaging with others or is having difficulty in social situations, start by talking with your child’s healthcare provider, like a pediatrician. They can help you understand the milestones your child should reach by their age and get support if your child isn’t progressing in a way that should be expected.
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