The Unusual Suspects

“They ‘cloned’ themselves on a popular girl in their class whilst at school, imitating their conversational style, intonation, movements, dress-style, interests, and other mannerisms, in minute detail.”

That anecdote isn’t from a spy thriller. It’s what women in a research study on autism told scientists about their daily lives. They described the experience of trying to navigate a world of social norms they lack the intuition for. And they described the anxiety, stress and exhaustion that comes with keeping up the facade.

Those feelings are far worse for women who don’t even realize they’re on the autism spectrum.

Recent research now suggests that an entire subgroup of girls and women with Autism Spectrum Disorder, or ASD, are slipping through the cracks and going undiagnosed.

“Much of the behavioral research has been conducted using all-male or mostly-male study groups.”

People on the autism spectrum sense and make sense of the world in fundamentally different ways yjan those who are neurotypical. Senses entangle. Sound and touch are overwhelming. Laser focus can develop on seemingly random objects or topics. Communication is frustratingly difficult. And you can forget about trying to make sense out of the myriad of illogical social conventions that dot daily life.

Chances are, when you think of someone on the autism spectrum, you picture a boy. For good reason, too. Most clinical psychologists consider simply being male a risk for developing autism. Currently, the number of males diagnosed with ASD is roughly double the number of females. Some estimates, however, suggest that it could be higher: four or five times that of females. Why? For a long time, that question has been met with a collective shrug by the medical community. Some suggest that the second X-chromosome females carry may offer a kind of protection, allowing genes to “absorb” more mutations like armor absorbs impact. And while there is some evidence to support this, it’s not overwhelming or conclusive.

Since autistic boys appeared to be more common, most of the diagnostic criteria were developed from observations of those boys. Even much of the behavioral research has been conducted using all-male or mostly-male study groups.

In recent years, however, there has been an increasing debate over whether this apparently skewed sex ratio is altogether accurate.

There are several illnesses and disorders that manifest differently in men and women. Famously, researchers only recently discovered why women were more likely to die of a heart attack than men. The symptoms we commonly hear about, like chest pains and shortness of breath, don’t always occur in women. They may experiences fatigue, back pain and nausea instead.

It’s also common for girls with ADHD to be misdiagnosed with ADD because they tend to be less aggressive and impulsive than boys with the disorder. Their problems arise more from daydreaming whereas boys tend to be more disruptive.

Depression can get tricky, too. Men tend to be more aggressive and have higher rates of alcohol and substance abuse. Women are more likely to ruminate on negative feelings or have bouts of crying.

In these examples, the differences can be boiled down to two things: biology and culture. It is biology that causes different heart attack symptoms in women, but it is likely culture that drives substance abuse in men with depression. Most of the time, though, it’s murkier. Aggression in boys with ADHD may be biological, but boys also tend to “act out” in class more often than girls do, which draws attention to the disorder.

It is this murky space that is the likely cause of why so many girls and women who lie on the highest-functioning end of the autism spectrum, are going undiagnosed.

Studies in children with ASD have hinted at differences between boys and girls on the autism spectrum. General conclusions are that girls on the spectrum have fewer repetitive behaviors than boys, and their interests are not as narrow and are perceived as more “appropriate.” Girls’ social and communication skills tend be a little better than boys’, as well.

While these differences may not matter much in diagnosing a child who may be non-verbal or have other obvious characteristics of autism, it does matter when you get to the other end of the spectrum.

Interesting, at this highest-functioning end, the type that used to be called Asperger’s Syndrome, the disparity between boys and girls with autism is at its greatest. The estimate is roughly 10-to-1.

One study done in adults with ASD found that women had better communication skills than men. Notably, the individuals they studied were “equally autistic” as children, meaning that women had somehow been able to find a way to compensate for their challenges in communicating as they grew older.

“Some girls can ‘camouflage’ their ASD in a way that many psychologists don’t immediately pick up on.”

Anecdotal evidence suggest that women simply learned these skills (or learned enough of a social script in order to “fake it”) because of the different ways boys and girls are socialized. Girls’ social worlds during childhood and adolescence are heavy on talking or doing activities that involve lots of talking. Boys, on the other hand, typically get together to play sports or video games, activities that don’t require the same level of social skills girls employ. The difference, as stereotypical as it might be, might be enough to help girls “camouflage” or “mask” their ASD in a way that many psychologists don’t immediately pick up on.

It took a decade and nine wrong diagnoses for one woman with Asperger’s to finally get the treatment she needed. Unfortunately, she also deals with social anxiety and depression because of the years she spent wondering what was “wrong” with her and why she couldn’t fit in with other girls her age.

The attention autism has received in recent years and the understanding it has bred is a remarkable achievement. But there is still more work to be done to ensure we’re taking care of everyone on the spectrum, not just the usual suspects.

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