The Lost Girls

The Lost Girls

Apoorva Mandavilli

It took 10 years, 14 psychiatrists, 17 medications and 9 diagnoses before someone finally realized that what Maya has is autism. Maya loves numbers, and with her impeccable memory, she can rattle off these stats: that the very first psychiatrist she saw later lost his right to practice because he slept with his patients. That psychiatrist No. 12 met with her for all of seven minutes and sent her out with no answers. That during her second year at Cambridge University in the U.K., industrial doses of the antipsychotic quetiapine led her to pack on more than 40 pounds and sleep 17 hours a day. (Maya requested that her last name not be used.)

But those numbers don’t do justice to her story. It’s the long list of diagnoses Maya collected before she was 21, from borderline personality disorder to agoraphobia to obsessive-compulsive disorder, that begin to hint at how little we understand autism in women.

But those numbers don’t do justice to her story. It’s the long list of diagnoses Maya collected before she was 21, from borderline personality disorder to agoraphobia to obsessive-compulsive disorder, that begin to hint at how little we understand autism in women.

Her conversation with psychiatrist No. 14 went something like this:

Do you hear things that others don’t?
Yes. (Maya’s hearing is excellent.)

Do you think others are talking about you behind your back?
Yes. (Maya’s extended family is particularly gossipy.)

The psychiatrist didn’t explain exactly what he was trying to assess. Literal to a fault, Maya didn’t explain what she meant by her answers. She left his office with her eighth diagnosis: paranoid personality disorder.

Maya does have some of the conditions she’s been diagnosed with over the years — she’s been depressed since the age of 11, has crippling social anxiety, and in her teens, wrestled with anorexia. But these were just expressions of the autism that was there for anyone to see had they looked closer. “It’s all secondary to the Asperger’s,” says Maya, now 24. “I get depressed and anxious because life is difficult; it’s not the other way around.”

It’s not uncommon for young women like Maya to be repeatedly misdiagnosed. Because autism is at least three times as common in boys as in girls, scientists routinely include only boys in their research. The result is that we know shockingly little about whether and how autism might be different in girls and boys. What we do know is grim: On average, girls who have mild symptoms of autism are diagnosed two years later than boys. There’s some debate about why this might be so. From the start, girls’ restricted interests seem more socially acceptable — dolls or books, perhaps, rather than train schedules — and may go unnoticed. But the fact that diagnostic tests are based on observations of boys with autism almost certainly contributes to errors and delays.

As they enter their teens, girls struggle to keep up with the elaborate rules of social relationships. Cribbing style notes on what to say and how to say it, many try to blend in, but at great cost to their inner selves. Starting in adolescence, they have high rates of depression and anxiety — 34 and 36 percent, respectively. A few studies have also found an intriguing overlap between autism and eating disorders such as anorexia, although the studies are too small to estimate how many women have both.

Even after a girl gets the right diagnosis, she may be offered behavioral therapy and specialized lesson plans, but they’re essentially the same services offered to a boy in the same situation. Scientists and service providers rarely acknowledge the additional challenges being female may bring, whether physical, psychological or societal. There are no guidebooks for these girls or their families about how to deal with puberty and menstruation, how to navigate the dizzying array of rules in female friendships, how to talk about romance and sexuality or even just stay safe from sexual predators. Advocates and scientists in other disciplines have run up against and resolved many of these same problems, but in autism, the fact that boys and girls are different is sometimes treated as if it’s a startling new discovery.

In the past two to three years, there has been an uptick in the attention paid to the issues that affect women with autism. More money is now available for scientists to study whether and how autism differs in boys and girls. This past year, the journal Molecular Autism dedicated two special issues to research specifically exploring the influence of sex and gender on autism. “Almost overnight, we went from a couple of people talking about sex differences to everyone studying this as a major factor in the field,” says Kevin Pelphrey, Harris Professor at the Yale Child Study Center.

Unpublished results from Pelphrey’s lab confirm what common sense suggests: Women with autism are fundamentally different from men with autism. Autism’s core deficits may be the same for both, but when the symptoms intersect with gender, the lived experience of a woman with autism can be dramatically different from that of a man with the same condition.

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