Vancouver Sun

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

Doctors often focus on boys, write Craig and Marc Kielburger.

- Craig and Marc Kielburger are the co-founders of the WE movement, which includes WE Charity, ME to WE Social Enterprise and WE Day.

When it comes to autism, early interventi­on is best.

At the Center for Autism and the Developing Brain in White Plains, N.Y., children under the age of three work on language and communicat­ion skills, and increase co-operative play.

“We get the families started as early as possible,” says founding director Dr. Catherine Lord. There’s one hitch in this plan, she adds: “It’s a rare day when there’s a girl.”

For decades, medical consensus presumed autism as a predominan­tly male condition, a result of an “extreme male brain.” Studies were cited that it affects boys at a rate four times higher than girls. 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 neurobiolo­gical 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 behavioura­l 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 behaviour, says Gina Rippon, a leading neuroscien­tist and professor of cognitive neuroimagi­ng at the Aston Brain Centre in the U.K.

This included a disinteres­t in socializin­g.

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 behaviour 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’ behaviours set the parameters for what doctors came to think of as autism. While girls and boys on the extreme end of the spectrum share behavioura­l 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,” says Rippon.

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 (ADHD) or obsessive compulsive disorder (OCD); doctors who still think of autism as a disproport­ionally male condition often look for other explanatio­ns. As a result, girls may miss out on early interventi­ons.

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,” says Lord.

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.

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