by Amy Stewart
APOORVA MANDAVILLI
The Lost Girls
FROM Spectrum
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 number 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 United Kingdom, 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.
Her conversation with psychiatrist number 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.
Girl Power
From its first clear description in 1943 by Leo Kanner, autism has been known to crop up in more boys than girls. But why this is so remains a mystery.
At first, scientists looked for the simplest explanation: that a boy who carries a faulty stretch of DNA on his single X chromosome develops autism, whereas a girl who inherits the same mutation would be unaffected because she has a second X chromosome to compensate.
But the search for this X factor went nowhere. “I think the thinking is now moving more to the idea that women are protected, which I know sounds like two sides of the same coin, but it plays out in a different way,” says Stephan J. Sanders, assistant professor of psychiatry at the University of California, San Francisco. The idea is that, for as yet unknown reasons, women can tolerate more mutations than men can, and so need a bigger genetic hit to develop autism.
A 2012 paper that laid out this “female protective effect” in autism marked a turning point in the field, bringing the topic of girls with autism into the spotlight. “Once the genetics community became interested in it, it just absolutely took off,” says Pelphrey.
Around the same time, Pelphrey and his collaborators won a five-year, $13 million grant to probe the differences between girls and boys with autism, as well as their unaffected siblings. They are recruiting 250 girls with autism between 6 and 17 years old at six sites across the United States. They plan to characterize the behavior, genetics, and brain structure and function of these girls and compare these findings with data from 125 boys who have autism, as well as from 50 children in each of the following groups: typically developing boys, typically developing girls, unaffected male siblings, and unaffected female siblings of children with autism. “We’re trying to address the question: Are girls different? And how are they different?” says Pelphrey.
A few studies have explored this question. There seems to be an overall consensus among scientists that at the more severe end of the spectrum—characterized by low intelligence quotient (IQ) and repetitive behaviors—there is little outward difference between girls and boys with autism. It’s at the other end of the spectrum that the science is fuzzier. Given the small numbers of women with autism in the studies, there are few definitive answers.
Early studies estimated that at the high-IQ end, the male-to-female ratio is as high as 10 to 1. The picture emerging from studies looking at girls with autism over the past few years suggests this ratio is artificially inflated, either because girls at this end of the spectrum hide their symptoms better, or because the male-biased diagnostic tests aren’t asking the questions that might pick up on autism in these girls—or both.
“For some males, you can make the diagnosis at least provisionally in your mind within 10 minutes of them coming into your office,” says Simon Baron-Cohen, director of the Autism Research Center at Cambridge University in the U.K. “Whereas for some of the women, it might take half an hour or not till halfway through a three-hour diagnostic interview before they’re revealing what’s behind the mask.”
Hidden Hurt
It takes hours to see glimpses of the pain Maya has endured over the years. She makes eye contact, pokes fun at herself, and takes turns in conversation—things people with autism are generally known to have tr
ouble doing. On a warm June day in London, dressed casually in a T-shirt and shorts, she looks like any other British 20-something. “You can see by meeting with me that I’m quite chatty and that people wouldn’t guess that I have Asperger’s,” she says.
Maya is proud of her accomplishments—and rightfully so. She excelled at school: she could read fluently by age five and began reading four or five books a week. She was lead violinist at her school, performing at the Barbican Centre in London, and can also play piano and viola. She taught herself to play the clarinet, and after nine months of lessons, performed a Mozart concerto at her school.
But as the conversation turns more intimate, she and her mother reveal the agony that has formed the backdrop to her achievements. At four, Maya had severe separation anxiety and screamed every time strangers entered her nursery school. Later, at her all-girls school, she sat by herself at playtime and read everywhere, even onstage at a cousin’s raucous wedding. She struggled with small talk, regularly made social faux pas—blurting out the denouement of a mystery, or reciting divorce statistics at an engagement party—and rambled on about her interests so long that her mother devised a secret gesture, a tap on the watch, to signal her to stop.
Any small disruption in her routine—dinner on the table 10 minutes later than promised, a late appointment, her little brother sitting in her favorite chair—could ruin her week. (“It’s not something I like about myself,” Maya says. “I can’t help having this need for wanting everything to be the same—but I do.”) She rarely got a good night’s sleep and had debilitating nightmares. She turned down invitations to “aimless” social activities such as shopping, and called other girls out when they flouted the school’s rules, turning would-be friends into enemies.
By the time she was 8, she was bullied so much at school that she became sick with anxiety every Sunday night. At 11, her parents finally switched schools, but she was bullied there as well—even on the 45-minute bus ride each way.
Looking for the common factor, Maya’s logical mind pinned the blame on herself rather than on the cruel social games of girlhood. “I thought: Everything’s different—the school’s different, the people are different, yet the bullying is the same,” she recalls. “Therefore, the only thing it can be is that something’s wrong with me.”
The bullying got violent and more vicious as she got older. She recalls one set of girls telling her that the world would be a better place if she weren’t in it, and that they felt really sorry for her parents. Ever honest herself, Maya believed them: “I won’t say things unless they’re true, so I thought, why would they?”
When she was about 12, Maya began secretly cutting herself. Like many girls with autism at this age, Maya was keenly aware of all the ways in which she was being excluded by her peers. She became intensely depressed, launching her long and dysfunctional relationship with the psychiatric establishment.
At 15, to keep herself occupied during the unstructured summer holidays, Maya began volunteering with boys who have autism—at first only because the organization was around the corner. She never made the connection that she might have something in common with them. She brought one of the young boys home to visit once, and still neither her father, a physician, nor her mother, a clinical virologist, picked up on any similarities.
“My picture of autistic was what this little boy was like—and that’s not what Maya’s like. He was nonverbal, disruptive,” her mother, Jennifer, says. “I would not have made the connection with all the unhappiness she experiences.”
The bullying stopped at 16 when Maya was moved into a new class at the school. But soon after, she became obsessed with controlling her weight. Like many other adolescent girls with autism, she developed an eating disorder. The way she sees it now, that preoccupation was an outgrowth of another aspect of her autism—her love of numbers. “I was obsessed with decreasing the number of calories I ingested, and the numbers on the scale going down,” she says. Anorexia also resonated with her perfectionistic streak. “It’s fine if it’s something like learning musical instruments,” she says. “It’s not so fine if you decide to starve yourself, because I wanted to do that to perfection as well.”
Over the next two years, Maya became “a master of disguise,” hiding her food and exercising in secret, even on a family safari in Kenya in July 2009. “You know what I remember about that trip? I remember that I gained four hundred grams in two weeks; that’s what I remember,” Maya says.
Each accomplished target led to the next until at one point Maya, who is five feet six and a half inches, weighed just under 44 kilos (about 97 pounds). “The anorexia has been, from my perspective, possibly the most difficult thing to cope with, out of all the things we have gone through,” says her mother, Jennifer.
In August 2009, relenting to her parents’ pleas, Maya went back to her first psychiatrist. She emerged with six diagnoses, including anorexia, generalized anxiety, bipolar disorder, and agoraphobia.
In October of that year, despite the ongoing anorexia, Maya’s parents drove her to Cambridge University, her life’s dream until that point, crying all the way home because they were so worried about her. At first, Maya seemed to thrive—she enjoyed her classes, and made friends who were “quirky” like her, her mother says. But soon, she stopped talking about her new friends, and when her friends would knock on her door, she simply wouldn’t answer. The depression that had come and gone since she was 11 resurfaced. “I didn’t want to socialize, I didn’t want to see anyone, it was too difficult,” Maya says. She also began taking overdoses of her meds, enough to get her on the radar of the local mental health team.
Maya’s second year was the same. She continued to struggle with anorexia: “It clocked that my goal was to weigh nothing.” Then one day, her counselor at Cambridge pointed out that even if she had no fat or muscle, she would still carry the weight of her bones. “Therefore, I could never weigh nothing, even if I was dead,” Maya recalls thinking. As is the case for many people with autism, facts hold great power for Maya. The logic of the counselor’s statement got through to her like no amount of pleading from her parents had. “I realized that what I was doing was completely pointless. I was never going to get where I wanted to.”
The relief from the decision to stop controlling her weight carried Maya through her second year. The family once again went on an exotic holiday, this time to the Galápagos, and Maya seemed at peace. She swam with the dolphins—and she ate.
But back at Cambridge for her final year, she again sank into a deep depression. Her mother, who had rented an apartment in town and slept on Maya’s floor one or two nights a week, urged her to leave university so she could focus on feeling better. Quitting went completely against the grain for Maya. “I don’t give up on things,” she says. “I hate it when plans change. My plan was to finish school, go to university, graduate. My plan was not to get so depressed that I had to leave university.” But four weeks into the term, after getting no help from a university psychiatrist (the one who allotted her seven minutes), she made the difficult decision to leave.
Far from making her feel better, however, leaving Cambridge made her feel as if she had no future. Overweight and sluggish, she slept through her days at her parents’ house. On the 29th of December, after going out to lunch (which Maya finds stressful), cooking her family dinner (which she loves to do), and a pleasant and unremarkable night of watching television with them, Maya took more than 30 tablets of paracetamol (acetaminophen), about 15 codeine pills, and all the quetiapine she could lay her hands on.
“Nothing was getting better,” she says. “I just gave up; I’d had enough of life.”
A short while after taking the pills, Maya panicked that she was still awake, and that she might begin to vomit, something she dreads. She woke her parents and, within a half hour of arriving at the emergency room, fell into a coma.
Social Networks
In early childhood, boys and girls with autism are about the same. If anyt
hing, girls appear to be more social—whether because they actually are or are just perceived to be. As they edge closer to adolescence, however, girls with autism lose this early social advantage, becoming less and less likely to have friends, and more likely to be isolated. “It can be very, very tough for them,” says Pelphrey.
For some girls, that may be a result of having mostly been in classes with boys who have autism. But even for girls who are placed in mainstream schools, the rituals of female adolescence can be boring or bewildering.
Adolescent boys tend to socialize in loosely organized groups focused on sports or video games, allowing a boy with minimal social skills to slide by, says Kathy Koenig, associate research scientist at the Yale Child Study Center. “For girls, socialization is all about communication, all about social-emotional relationships—discussions about friendship, who likes who and who doesn’t like who and who is feuding with who,” Koenig says. “Girls on the spectrum don’t get it.”
Adolescence can be a confusing time for any young girl, but for a girl with autism, “trying to make friends and not understanding why the friendships aren’t lasting, or why you’re not being included when people are making plans” can be incredibly isolating, says Baron-Cohen. “You’re aware enough to know that you’re failing, basically.”
