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Discrimination And Diagnosis: The Lost Girls On The Autism Spectrum

Girls on the less extreme end, whose autism manifests differently than boys, have slipped under the radar.

07/31/2017 14:23 EDT | Updated 07/31/2017 14:23 EDT
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When girls fixate on dolls or books, when they're obsessively neat or shy and quiet, that's seen as normal—deferential female behaviour.

When it comes to autism, early intervention is best.

At the Center for Autism and the Developing Brain in New York, children under three work on language and communication skills, and increase cooperative play.

"We get the families started as early as possible," explains founding director Dr. Catherine Lord. There's one hitch in this plan: "It's a rare day when there's a girl."

For decades, medical consensus presumed that autism as a predominantly male condition, a result of an "extreme male brain." Studies show it affects boys at a rate four times higher than girls.

Girls on the less extreme end, whose autism manifests differently than boys, have slipped under the radar.

That thinking is starting to change.

New research has uncovered a blind spot for women and girls on the spectrum, a gender bias that leaves them undiagnosed.

A complex neurodevelopmental condition, autism is a spectrum of characteristics that are different in every individual. To complicate matters, there are no brain scans or blood tests to diagnose autism.

In the absence of physical tests, doctors rely on behavioral assessments that come with their own biases. Right from the outset, doctors focused on boys because they tended to exhibit the most obvious signs of atypical behavior, explains Gina Rippon, a leading neuroscientist at the Aston Brain Centre in the UK. This included a disinterest in socializing.

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Sad caucasian autistic little girl

Young boys are stereotypically rowdy and sociable. So when boys obsess with maps or avoid group play in favour of time alone, society recognizes that behavior as neurologically atypical, a symptom of their need to categorize and find routine. When girls fixate on dolls or books, when they're obsessively neat or shy and quiet, that's seen as normal—deferential female behaviour.

Early focus on so-called boys' behaviors set the parameters for what doctors came to think of as autism. While girls and boys on the extreme end of the spectrum share behavioral patterns and are diagnosed in roughly equal numbers, girls on the less extreme end, whose autism manifests differently than boys, have slipped under the radar.

"It's become a self-fulfilling prophecy," Rippon says.

It's not uncommon for parents to be told their daughters can't be on the spectrum, according to Beth Finkelstein, executive director of Felicity House, an autism support group for women. Girls are often misdiagnosed with attention deficit hyperactive disorder or obsessive compulsive disorder; doctors who still think of autism as a disproportionately male condition often look for other explanations. As a result, girls may miss out on early interventions.

With more understanding and attention, the lost girls on the autism spectrum will not be lost for long.

A correct diagnosis brings with it an ecosystem of support, from educational accommodations to social services. For many, there is also a sense of community. Rippon, Finkelstein and Lord have each met women diagnosed later in life who found relief in the knowledge.

"Knowing that other people experience the world in a similar way is incredibly helpful," Lord says.

As new research—and vocal parents—expand how we think about autism in girls, doctors are creating new services to meet their needs, from amending diagnostic tools to new guidebooks that help navigate puberty and social relationships.

With more understanding and attention, the lost girls on the autism spectrum will not be lost for long.

Craig and Marc Kielburger are the co-founders of theWE movement,which includes WE Charity, ME to WE Social Enterprise and WE Day. For more dispatches from WE, check out WE Stories.

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