Why Women With Autism Are Invisible

The CDC just reported that while 1 in 54 boys are diagnosed with autism, only 1 in 252 girls are. Some advocates say women and girls with the disorder just aren’t getting the help they need.

Autism spectrum disorders are big news lately. But even as overall diagnoses climb (a child’s chance of getting diagnosed with something on the spectrum rose 20 percent between 2006 and 2008), women and girls with autism may be missing out. The perception of autism as being a disease that’s a function of “an extreme male brain,” as one expert put it recently, makes it harder to help autistic girls. As Liane Holliday Willey, who has Asperger’s and is the author of “Pretending to be Normal: Living With Asperger’s Syndrome,” put it, “Females are grossly underdiagnosed with autism. We do not ‘present’ as loudly as boys do.”

Wendy Lawson, author of “Build Your Own Life: A Self-Help Guide For Individuals With Asperger Syndrome” and a self-described autistic woman, adds that she thinks girls on the spectrum may be underdiagnosed because if they have obsessive interests (often a feature of spectrum disorders), these are more likely to be socially acceptable than the obsessions of boys with autism. Girls, she says, might get into reading or animals, which seem normal, “so people don’t pick up on our social difficulties.”

Jennifer McIlwee Myers, who has Asperger’s and is the author of “How to Teach Life Skills to Kids with Autism or Asperger’s,” concurs. She says boys on the spectrum are more likely to respond to their difficulties with anger and aggression, while girls are more likely to “deal with issues quietly,” cultivating extreme “niceness” and imitating other girls’ behavior. Boys who have the vision problems that sometimes go with autism spectrum disorders may hit other boys, she explains, while girls might instead cling to other girls. And a boy who attacks other kids is going to get intervention a lot faster than a girl who cries quietly every day. Myers says there are “a lot of invisible girls” who are autistic but never get help, because nobody notices.

This can cause problems later on. Willey says that when it comes to dating, women on the spectrum tend to be targets of physical and mental abusers. “We are the women with date rape stories,” she says. Myers agrees that women with autism “have a big target on us for guys who are users, because we won’t pick up on it and somehow they know that.”

Even with kind partners, they can have trouble communicating their needs in relationships, and figuring out if their feelings are reciprocated. Myers thinks dating might actually have been easier for women on the spectrum “when it was regimented,” when social conventions like dance cards and courting determined how people acted. Now that coupling up is more “free form,” women with autism have a hard time.

And spending your life imitating and pleasing people can cause other problems. Myers says she’s met women who have just been diagnosed with Asperger’s as adults and now have no idea who they are, because they’ve spent their whole lives trying to act like other people. For women like this, “everything they like” is about not making people mad and not being singled out as different — when they’re diagnosed as adults, they have to build a whole identity from scratch.

The first step to solving these problems, say advocates, is actually diagnosing autism in girls. Lawson says, “there needs to be a more feminist approach to autism which is often seen as owned by men,” and that doctors and treatment programs need “an understanding of how autism is experienced by females.” Willey agrees, arguing that the problems of diagnosing autism are similar to those surrounding heart disease: “We now know the calling cards of a heart attack for men, are in many ways different for women. When we better describe autism as it effects women, we can better diagnose.” Often, according to Myers, this will mean paying attention to the kid who’s being quiet, not just the one who’s acting out.

But Willey says there’s another step too: another support system for females. “We are by nature, more prone to self-injury and self-blame when we are confused by our world,” she says. “So as a first measure, we need supports that will immediately bring us help that keeps us from hating and hurting ourselves.”

And she adds that women on the spectrum could use help when they have kids of their own. They’d benefit from “direct instruction on parenting and mentoring both our daughters and sons, not because we are incapable of being good moms and role models, but because we might miss some of the more subtle points of parenting like helping our kids be accepted by other kids or helping our kids navigate the complicated school systems and non-academic challenges.”

Willey notes that girls on the spectrum do have one advantage over boys: little girls are raised to be more nurturing. While a neurotypical girl might not know her classmate is autistic, she might notice that classmate’s odd behavior or dress and offer advice. Willey explains, “This might mean a ‘normal’ little girl would help an autistic girl learn how to act in groups, how to dress appropriately for an event, how to take care of personal hygiene issues, or even how to handle peer pressure — whereas a ‘normal’ little boy might simply ignore the autistic boy on the playground or the odd little boy who doesn’t bathe often enough.” This can be a big help since aid from peers “helps the brain begin to form structures […] that will help the individual control (or overcome) the more more obvious signs of autism.”

In fact, matching autistic kids with neurotypical peers who help them learn social skills is one form of therapy for autism — the Association for Science in Autism Treatment says it “increases attending and commenting skills to peers, play and conversation skills, and social interaction.” But kids won’t get therapy if they aren’t diagnosed, and Myers says the best advice she can give doctors who want to help girls with autism is simple: “just evaluate them.”

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