The Invisible Women With Autism

It took 10 years, 14 psychiatrists, 17 medications, and nine 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 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 in this story.)

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.

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 with autism 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.

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, a professor at the Yale Child Study Center.

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, an 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 U.S. 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.

“Clinically, my general impression is that young girls with autism are different [from boys], but it has been very hard to show that in any kind of a scientific way,” says Catherine Lord, the director of the Center for Autism and the Developing Brain at Weill Cornell Medical College in New York City. On average, girls are more chatty, less disruptive, and less likely to be entranced by trains or moving vehicles than boys are, she says. However, she adds, this is also true of typical girls and boys, so it becomes difficult to separate gender differences in autism from gender differences in general.

Early studies estimated that at the high-IQ end, the male-to-female ratio is as high as 10 to one. 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, the 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.”

* * *

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 trouble 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 5 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.

Pep Boatella / Illozoo / Spectrum

But as the conversation turns more intimate, she and her mother reveal the agony that has formed the backdrop to her achievements. At 4, 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 on stage 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 400 grams in two weeks; that’s what I remember,” Maya says.

Kathy Koenig, an 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.”

as they are known to do in the general population, the differences in mood disorders between men and women with autism may even out.

There are any number of programs for people with autism that teach specific behavioral skills—improving eye contact or turning your body toward the person you’re speaking to, for example. But there is almost nothing to give adolescent girls the kind of emotional support that only comes from true companionship.

In the U.S., there seem to be just three such programs—one at Yale, one at the University of Kansas, and a new center in New York City.

The Yale program, which Koenig launched more than three years ago, brings girls with autism together for yoga, or to make jewelry or to watch the blockbuster movie Frozen—the same kinds of activities typical girls might do. There are different groups for young girls, teenagers and young women, with about 102 families registered in total. Some groups are purely social, but others offer training for interviews, or provide support for women in college.

The Kansas program, called Girls’ Night Out, goes one step further by pairing typical girls and girls with autism. Groups of girls might visit a hair or nail salon, a coffee shop or gym, or learn how to buy clothes appropriate for their age and the weather.

“I was worried at the beginning that people would think I was trying to change them, that I was focusing on appearance,” says the program director Rene Jamison, a clinical associate professor at the University of Kansas in Kansas City. But hearing from parents and from the girls themselves what a difference it has made to their confidence levels has been reinforcement enough, Jamison says.

Learning to brush their own hair or teeth and to use deodorant can make all the difference to teenage girls in social situations, Jamison says. “These are skills that other girls are picking up on naturally, and getting better at,” she says. “That’s not happening naturally for some of the girls we work with, and so, just like social skills, it has to be an explicitly taught thing sometimes.”

* * *

Even with early diagnosis, with social-skill and behavioral training and numerous other avenues of help, girls with autism and their families have little help coping with a key milestone: puberty.

Isabel Haldane, or “Lula,” as everyone calls her, is 11, and for most of her life has had multiple experts dedicated to helping her navigate the world, beginning with her anthropologist parents. Until she was about 15 months old, Lula seemed precocious, walking early and rapidly picking up words. Sometime between 15 and 18 months, she lost her words and began humming—the closest approximation of the sound, her mother says, is in the movie Finding Nemo when the character Dory is trying to imitate a humpback whale—during the day, and wailing in frustration all night. She also didn’t make eye contact or respond to her name, so by age 2, she was diagnosed with autism and recruited into an early-intervention program.

Since then, Lula has had combinations of speech therapy, playtime therapy, pivotal-response therapy—a form of applied behavioral analysis, the most common autism treatment—occupational therapy, and social-skills training. Starting at age 3, she placed into her local public school in suburban Connecticut, where she spends 11 months of the year, but she still has therapists who work with her for about five hours a week at school, and another hour a week at home.

Thanks to all this help, by age 5, Lula was mostly toilet trained and began to talk. By 9, she began sleeping through the night, and her parents could finally stop taking turns staying up with her all night. She scores below average on traditional IQ tests, but like many children with autism, she is adept at some things and stumped by others. She can shower, dress herself, pack her bag, and wait for the school bus at the bottom of her parents’ driveway, but she might do it all at 5 a.m., hours before she’s supposed to. She can read any word—“catastrophe,” for example, or “encyclopedia”—but ask her what the word means and she might respond with “I love Scott Walker” (a classmate, not his real name).

Many of the school’s students have known Lula since she was 5. But while the other girls have moved on to dance and gymnastics and music recitals, Lula is still mostly fixated on Hello Kitty. As kind as the girls are to Lula, they see themselves more as her protectors than as her friend.

Lula feels any social rejection acutely. She has memorized the birthdays of all of her friends but knows she is only invited to two parties a year. On a recent afternoon, as she arranged and rearranged her Hello Kitty-themed room, she perseverated about not seeing her friends at camp and about not wanting to get older.

Francesca Happé, the director of the MRC Centre at King’s College London. “They have good imitation, good intonation in their language, body language—surface behavior isn’t very useful for a diagnosis, at least for a certain set of women on the spectrum.”

Overall, the concept of compensation in women with autism hasn’t been well studied, Happé says. Compensation could be cognitive—learning the rules intellectually rather than instinctively, as Pelphrey describes it—or social, such as learning to mimic others. There are also societal factors at play. “Are we more tolerant, at least in some Western societies, of a girl who is very, very quiet and socially aloof, compared to a boy? I don’t know; I suppose you could say we have higher expectations of women,” says Happé. “All of these are hypotheses and they’re only interesting if they’re testable.”

A few teams, including those led by Happé and Baron-Cohen, are trying to find ways to get behind the masks. Baron-Cohen’s group is developing what he calls a “faux-pas test.” If a woman is getting by learning social rules one rule at a time, as Maya has, she’s bound to make a lot of mistakes, he says, because she’s likely to encounter a situation for which she hasn’t yet learned the rules. Happé is similarly creating tests based on real-life scenarios in which her team asks women not only why somebody said something, but also what they themselves would say next. “That really trips people up. It would require them to, on the spot, get it,” she says.

Baron-Cohen, Happé and others caution, however, that in some cases, women may have learned to cope enough that they don’t actually need a diagnosis.

“If they’re coping, do they want to think of themselves or for others to think about them in that way?” asks Happé. “Then it becomes a big ethical issue, doesn’t it?”

* * *

In Maya’s case, learning she is on the spectrum took some getting used to. But she says she’s very glad to have an explanation now for all of the difficulties she thought were unrelated to one another.

After she came out of her coma, Maya spent a week in intensive care and nine weeks in a terrifying psychiatric unit with severely ill patients. One threw a boiling cup of tea at a nurse, and another head-butted a nurse so hard that her teeth went through her lip. In the early days, Maya deliberately burned her arm with the hot water available for making tea, and threatened to try to kill herself again as soon as she got home.

But as the weeks passed, she started to feel better. She was given an antidepressant that seemed to work for her, and she lost the weight she had gained when taking quetiapine. She met a young woman who has since become her best friend. Then, several months after she left the hospital, she got the autism diagnosis.

Asperger syndrome, and asked if he would supervise her dissertation on mirror neurons and autism. He agreed. She still has bouts of depression, but her stay in the hospital taught her how and when to ask for help. “When I came out of hospital, I basically lived along the lines of ‘if it’s stressful, don’t bother doing it,’” she says. “Nothing is worth getting that depressed.”

The university accommodated her diagnosis, allowing her to take her exams alone and with breaks in between, and in June 2014, despite some ongoing depression, Maya graduated from Cambridge. “If you can go in two-and-a-half years from being locked in a psych unit to graduating from Cambridge, you can do anything, really,” Maya says.

After graduation, Maya worked for a year at a local primary school, supporting boys with autism in the class. She didn’t tell the school she has autism, and successfully held down the job all year. She enjoyed it so much, in fact, that last month she began training to be a primary-school teacher, specializing in mathematics, and plans to either teach mathematics or work with special-needs children. And this time, Maya revealed on the application form that she has autism. “She agonized about it a lot; she didn’t want people to prejudge her,” says Jennifer.

Outside of her teacher training, Maya spends time with her best friend, even going on a holiday together “with massive success,” and has dated men on the spectrum. Most of all, she is committed to learning how to take care of herself the way only she can. One day this summer, she went on a “fun run”—“which as far as I’m concerned are two words that should not be put in the same sentence,” she says—a loud and colorful obstacle course that Maya researched thoroughly online and prepared for with ear plugs. When she has a bad day, she has learned to wind down with multiple episodes of Grey’s Anatomy, which she has watched enough times to be able to fake being a doctor. She and her brother now laugh about her need to sit in the same seat at the dinner table, and her parents have learned to respect her need for solitude, despite their fears about what she might do when alone.

She has also been talking about her autism—at town-council meetings, to groups of teachers and trainee therapists—and helping to train the staff at doctors’ offices to accommodate people with autism’s need for order and quiet.

Maya still gets depressed, still rarely has a night free of nightmares, and may still go into a tailspin if her routines are disrupted. But she is better than she was at asking for support—and often gets it from a therapist who specializes in autism whom she sees every other week, or more often if necessary.

“The more I understand myself, the more I can explain to other people what I find difficult, and the more they can help me,” she says. “Life isn’t easy for me, but I understand myself so much better now.”

This article appears courtesy of Spectrum.