Deep Dive In-depth analysis of important topics in autism.
Illustrations by
Pep Boatella

The lost girls

Misdiagnosed, misunderstood or missed altogether, many women with autism struggle to get the help they need.

by  /  19 October 2015
illustration by:
Pep Boatella

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.

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.

“You can see by meeting with me that I’m quite chatty and that people wouldn’t guess that I have Asperger’s."

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 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, 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-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 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 9 months of lessons, performed a Mozart concerto at her school.

20151019DeepDiveTheLostGirls-IL-350But 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.

Each accomplished target led to the next until at one point Maya, who is 5 feet 6.5 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 Galapagos, 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:

Social isolation, bullying and depression are not exclusive to girls with autism — boys experience them too. But for older girls with autism, the intricacies of their social world add layers of complexity.

In early childhood, boys and girls with autism are about the same. If anything, 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.

Rainbow chart: A color-coded guide can help girls with autism know whom they can hug and who just gets a wave. Photographs by Christina Pye

Rainbow chart: A color-coded guide can help girls with autism know whom they can hug and who just gets a wave.

Photographs by Cristina Pye

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.”

Ostracized and aware of it, adolescent girls with autism become highly anxious and depressed, and many develop eating disorders. This trend remains constant until late middle age, when clinicians suspect that, 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 program director Rene Jamison, 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.”

Growing up:

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.

Kaleidoscope: As she rearranges her room, Lula Haldane frets about getting older. Photographs by Christina Pye

Kaleidoscope: As she rearranges her room, Lula Haldane frets about getting older.

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 decode 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.

Lula’s periods began just before she was 10, and she is fully developed physically, a beautiful brown-haired girl who looks older than her years. Puberty has brought enormous unforeseen challenges. Although Lula has learned how to use sanitary pads and sometimes remembers to change them, she doesn’t always think to dispose of them properly. “I didn’t even realize how much instruction it took to deal with a monthly occurrence. I didn’t know where to go on the Internet or who to ask,” says Hillary Haldane, Lula’s mother. “Where is the tutorial on this?”

Lula also shows a preteen’s healthy curiosity in sex, but none of the embarrassment or hesitation that might typically accompany it. A boy at school Lula has taken a shine to comes up in conversation often. She might announce that she wants to touch his penis, or smell his crotch. When she has blurted out these comments in school, her teachers’ reaction has been to isolate her. Knowing it goads the adults around her, Lula has taken to doing it even more.

“As we go into middle school, this is the biggest fear I have: her saying these things and then being ridiculed or bullied for it,” says Haldane. Even more worrying for her parents is the sort of attention she might attract outside school: “It’s so terrifying with the sexual predatory behavior that she might face, especially because her body is quite developed, and her sexual curiosity, and how much more I have to consider what her behavior signals to others as opposed to if she was a boy on the spectrum.”

Deeper worries:

Safety is an enormous concern for women who cannot advocate for themselves, and it weighs heavily on families’ minds. For Karleen, whose daughter Leigh, 28, is a nonverbal woman with autism, fighting for her daughter’s dignity has become nearly a full-time occupation. (Karleen asked that her and Leigh’s last names not be included, to protect Leigh’s privacy.)

Leigh uses a few words but, for the most part, cannot follow commands or speak. The youngest of three siblings, Leigh, like Lula, lost speech at 15 months and was diagnosed at 2. But she is unable to care for herself at all, and because of her tendency to hurt herself and others, needs around-the-clock care. “When she’s anxious, Leigh can strip right down. She can be trapped that way buck naked, until she can get the anxiety under control,” says Karleen. When she has her period, Leigh’s anxiety can skyrocket so much that she might shred pads into tiny pieces.

Serious concern: Like many parents of girls with autism, Hillary Haldane worries about her daughter’s safety. Photographs by Christina Pye

Serious concern: Like many parents of girls with autism, Hillary Haldane worries about her daughter’s safety.

After years of searching, Leigh’s family, based in Belmont, Ontario, found her a residential program that created the kind of calm and routine that Leigh needs. But the agency must follow union guidelines on equal employment, meaning that it might pair Leigh up with a male attendant.

For the past two years, Karleen has been appealing to officials at every level of the agency to allow only female attendants to work with her daughter — to no avail. In fact, she says, the agency may have to refer Leigh elsewhere because it cannot afford the legal fees to explore whether the law would allow it to only hire female attendants.

A former public health nurse who worked in women’s shelters, Karleen is only too aware of the potential for abuse, particularly with male attendants. “I think this could be a huge issue in the future,” Karleen says. The equal employment opportunity law was meant to protect people’s rights, Karleen says, but is paradoxically harming women like Leigh who need support and cannot advocate for themselves. “If you are able-bodied and you can speak or you can gather support, then you can challenge that or work that legislation on your own behalf, but if you’re someone like Leigh, then how can you be protected?”

Different worlds:

Whether it is Leigh’s thorny legal situation, Lula adjusting to her budding sexuality or Maya’s run-ins with psychiatrists who misunderstood her pain, the issues that dog women with autism have everything to do with their gender. For the first time, scientists are beginning to incorporate what they know about typical girls and their social world to understand girls with autism.

For example, it’s been known for decades that boys’ and girls’ social worlds are starkly divergent and that they learn the rules to function in these worlds in disparate ways. “There’s really good data to show that in typical girls and boys, the socialization trajectory is different,” says Koenig. “People never took that into account when they’re studying autism.”

Girl brain: There are intriguing hints that in girls with autism, the social brain works differently than it does in boys with the condition. Photographs by Christina Pye

Girl brain: There are intriguing hints that in girls with autism, the social brain works differently than it does in boys with the condition.

The multisite project that Pelphrey leads is making headway into learning how girls with autism are different — both by recording their behavior and by scanning their brains. For example, one of the cardinal observations about autism is that people with the condition seem uninterested in, or at least disengaged from, social interactions. Intriguing brain imaging evidence from Pelphrey’s lab suggests that this is true only for boys with autism.

“The most surprising thing — it might not be surprising to the clinicians out there, but to the scientists — is that we’re seeing strong social brain activation or function in girls with autism, which is, strictly speaking, counter to everything we’ve reported ourselves and other groups have reported,” says Pelphrey. “Their social brains seem to be intact.”

The social brain is an interconnected set of brain regions, including the face processing fusiform gyrus; the amygdala, an emotion hub; and the superior temporal sulcus, which tracks other people’s attention and movements. Imaging studies have reported that the social brain is underactive in people with autism, but Pelphrey’s lab has found that if typical girls have the most active social brains and boys with autism the least active, typical boys would tie with girls who have autism somewhere in the middle. “That kind of blew us away,” he says.

Particularly interesting is the unpublished observation that in girls with autism, the social brain seems to communicate with the prefrontal cortex, a brain region that normally engages in reason and planning, and is known to burn through energy. It may be that women with autism keep their social brain engaged, but mediate it through the prefrontal cortex — in a sense, intellectualizing social interactions that would be intuitive for other women.

“That suggests compensation,” Pelphrey says. It also jibes with women like Maya saying they have learned the rules of social interactions, but find it draining to act on them all day. “It’s exhausting because it’s like you’re doing math all day,” Pelphrey says.

Pelphrey is right that this finding isn’t entirely a surprise to clinicians. Some scientists who regularly see women with autism have picked up on their remarkable ability to learn the rules enough to camouflage their symptoms — the way Maya has learned to. (“I don’t like making eye contact,” Maya says. “I do it because I have to and I know it’s appropriate.”)

This means clinicians have to be more creative when diagnosing women on the spectrum, rather than simply looking for, say, repetitive behavior, as they might with men. “Without their self-report telling you how stressful it is to maintain appearances, you wouldn’t really know,” says Francesca Happé, 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?”

“Without their self-report telling you how stressful it is to maintain appearances, you wouldn’t really know."

New understanding:

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.

After her disastrous encounter with the psychiatrist who decided she has paranoid personality disorder, a doctor who had been kind to her while in the hospital offered to take Maya back as a patient. It was only when Maya began complaining about the ridiculousness of offices being closed on ‘bank holiday’ Mondays (“Weekdays are for work!”) and how overwhelming it was for her to walk down a noisy street that the psychiatrist added up the signs to arrive at the correct diagnosis.

A full 18 months after Maya came home from the hospital, she went back to Cambridge for her final year and switched her focus from genetics to psychology and cognitive neuroscience. She burst into Baron-Cohen’s office at Cambridge one day while he was in a meeting, announced that she has Asperger syndrome and asked if he would supervise her dissertation on mirror neurons and autism. He agreed. She still had 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.”

Pep Boatella

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.”

36 responses to “The lost girls”

  1. William Ray says:

    I feel terribly bad for Maya’s long journey, and I’m glad she’s finally found some peace with her diagnosis, but the article/writer’s belief that this experience is somehow uniquely female, is way off base.

    Some boys experience almost the exact same trajectory, and have just as much trouble with their condition being recognized – probably because the “experts” have the preconceived notion that boys’ (high-functioning) autism fits a simplistic pattern, and that boys’ social mechanisms are simply “video games and sports”.

    It’s quite depressing to see people with the wisdom to realize “these people are different, and we need to look at them as individuals”, who are simultaneously willing to say “but those people, over there, they’re all part of that group, and everything’s better for them/they don’t need individual consideration”.

    • Helene says:

      At no point does this article imply that boys on the spectrum have an easier time. It’s simply highlighting the ways autism might present differently in girls or how their trajectory can be distinct because of their gender. If you were looking for an article on how autism presents in or affects boys, you have a tremendous catalog of studies and research to choose from – this isn’t that. I think you’ve entirely missed the point of this article.

      • Ganondox says:

        I’ve always related more to the descriptions of autism in girls than in boys. What does that make me?

        • Jay says:

          There is an easy explanation. As someone with AS and a background in mental health, my experience is rather than “male” and “female” autism, there is “male type” and “female type” autism. For exam, my husband, daughter, sister, youngest brother, father and father in law, all fit into the male stereotype of autism. On the other hand, myself, my other brother and my brother in law all fit into the “female type” of autism – social (but at great emotional energy cost) and not always quite getting social interactions right.

          The male type aspies in the family are all in stereotypical aspie fields – IT, maths and engineering – while, me, my brother and brother in law are in much more people-based careers – I’m a nurse with a background in psychology and neuroscience, and my brother and brother in law have both worked in teaching and as missionaries.

          It’s not that autism symptoms are purely expressed by gender, rather it’s just that autistic people are like neurotypical people – there are “feminine” people most of whom are female, and “masculine” people most of whom are male.

          That’s my theory based on what I’ve studied and observed. I would love one day to go back to uni and do a masters and PhD on the gender-typed issues in autism diagnosis.

      • Otter jesus DMCA says:

        That’s literally the entire point of the article. The point of the article is to say, “even though autistic women struggle just as much are less then autistic men it’s somehow worse for autistic women so funding and research should go to them cause autistic men had their turn.”

        It’s incredibly sexist and illogical.

    • Otter jesus DMCA says:

      Exactly. This article claims somehow autistic women have unique challenges but fails to prove that. In fact it basically shows that society actually cares more about autistic women then it does autistic men.

      Autism is still considered a male issue though which is why basically no one cares and everyone seems fine with autistic people committing suicide and getting murdered constantly. If it’s a male issue it’s not important.

  2. Danie says:

    As the parent of an 8 year old girl on the spectrum, I found this a fascinating and terrifying read. Thank you.

    • Laura G. CO says:

      Danie, me too. My daughter is almost 7 and reading this was heartbreaking. My daughter is very high functioning and brilliant, and also on spectrum. She is already at the realization stage and she’s punishing herself. It’s a fight and struggle almost everyday being the advocate and parent of a kiddo with Aspergers or any type of autism. My reason for replying is there seems to also be very little community, especially with the high functioning kiddos. Would you like to exchange email and get to know each other a bit…or something? It might seem crazy to reach out like this but it’s truly very rare for us to meet little girls around my daughter’s age that struggle. Maybe we can form a sort of community. Anyway, if interested my email is 🙂 Have a great day!

  3. Candiece says:

    Great book on being a girl with aspergers!! Deals with sensory issues, sex, friendships, dating, marriage, having kids etc!! It has advice to parents as well… Since I’m an adult I just use the advice for myself and hopefully with my loved ones reading it.. They’ll get a better understanding of how to treat me. 😉

  4. Fantastic article. Thank you so much! If you are a girl or woman with autism, or the parent of a girl with autism, please join our Facebook page to spread the word.

  5. Insatiable Booksluts says:

    That last line is exactly why girls need a diagnosis, regardless of their ability to appear to cope.

    • Alice says:

      Very much agree. I’m disturbed by Happe’s implication that autism diagnosis is inherently a bad thing to be avoided if possible- it should be seen as a useful tool to help people understand themselves, not a label. I’ve heard too many parents refusing to diagnose their children because they don’t want them ‘put in a box’ or they think the child is ‘doing okay’.

      I also think this reflects Baron-Cohen et al’s continuing insistence on social impairment as the be all and end all of autism, rather than looking at other possibilities such as sensory difficulties. As this article shows, autistic women who are coping socially are still very likely to develop problems like anorexia and depression, often precisely because of the effort they expend to ‘pass’. The idea that social difficulties are the only reason to give a diagnosis is a dangerous myth.

      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?”

      • Apoorva Mandavilli says:

        Dear Alice, I think Francesca Happe’s point is not that a diagnosis is inherently a bad thing–I did her a disservice if that’s how her quote reads. What she was saying is that in most cases a diagnosis is helpful, but we should not assume that everyone needs or wants one. Her point is that we should evaluate on a case-by-case basis, and take the individual’s wishes and circumstances into account. I hope that clarifies things.

      • Ganondox says:

        I’m really not a fan of Baron-Cohen’s theories, I completely agree he puts way to much emphasis on the social aspects.

      • Jay says:

        Even if someone appears to be coping, diagnosis can be life alteringly positive. I know it was for me. Because even those who appear to be great at coping, eventually have periods of less coping – and having a label can mean getting the right help at those times.

  6. Aaron Barr says:

    If more scientists would speak up about their findings in all areas, perhaps we could put to bed this notion that men and women, boys and girls, are all the same. They are not the same, but the social engineers are hell-bent on proving that they are. Whatever happened to “equal but different”? Glad this author is pointing out that there actually are differences between men & women.

    I can relate to a little to the struggles this lady has gone through. While I am a man, I am constantly getting rediagnosed. For the time beings, I suppose, I’ve been identified as Bipolar with Borderline Personality Disorder. I have to say though, I am still not sure if that’s quite right. There are many aspects of Aspberger’s that I identify with, but they don’t all fit, so I am reluctant to even bring that up with my therapist. *sigh*

  7. Magdalena Reguła says:

    Girls with mild symptoms are being diagnosed two years later than boys? Really??? Girls with mild symptoms don’t get diagnosed at all, they will self diagnoze themselves when they’re turning 40 and still then people will tell them, they’re making this up as they’re ‘just a bit different’.

    • Laura says:

      I diagnosed myself at 28. Last year at age 35 I went to my university’s counseling center. They gave me some ridiculous diagnoses and they said it was absolutely impossible that I have (or ever had) Asperger syndrome, mainly because I can carry on a conversation. It doesn’t matter that my life experiences fit completely with the experiences that other AS women have had. This is why psychologists and psychiatrists are dangerous. They have a god complex where they absolutely believe that they can never be wrong. I tried to show them articles explaining the symptoms of autism in girls and women, but they would not even look at them. They said that because I was trying to prove them wrong that I was actually verifying my diagnoses. It is simply impossible to reason with them. My suggestion is to go to an autism clinic, and don’t bother with anyone who isn’t experienced with treating women with autism.

    • Otter jesus DMCA says:

      40 year old women are claiming they’re autistic? LOL autistic men are usually dead before we turn 30.

  8. Darla R. Hitchcock says:

    This article pretty much describes my life. I’m 57, and I hide it really well, but there it is!

    • Otter jesus DMCA says:

      And it describes my life and I’m a guy… well I’ve never found any kind of success and there’s no hope for me but… yeah… autistic women and autistic men are not different.

  9. Heather Jean Clemons says:

    I know that my daughter is one of these girls like Maya. I do autism research and its glaringly clear to me as well as many therapists who have spent time with her. She is chatty though and doesn’t hand flap (but she does blow air in and out of one nostril ad nauseum) and is obsessed with Pokemon but so are other kids. She has never had a close friend or been invited to parties and on and on. Everyone describes her as SO SMART. But because of the lack of repetitive behaviors/restrictive interests + the chattiness they would only give her the SCD diagnosis along with ADHD and a mood disorder DMDD. They also have tried so many meds that don’t seem to work. She is getting progressively worse and is now 10 and in and out of the psych hospital. I want an ABA therapist and the therapy she really needs but can’t get it without the diagnosis. Does anyone know where to go/who to go to who is good at recognizing ASD in these types of girls?

    • Apoorva Mandavilli says:

      Dear Heather, Thanks for sharing your daughter’s story. Where you can go to for an autism diagnosis really depends on where you live. There are a few autism centers in the world where there are clinicians adept at recognizing autism in girls. I’m not an expert, so I would suggest contacting one of the scientists I quote in the story for more information. I know that a couple of parents have taken a printout of this story to their local doctors to convince them of how different autism looks in girls. You could also try that.

      Good luck–I hope your daughter has the very best outcome you wish for her.

    • Cecilia Virgen says:

      Hi Heather,
      My story is a bit lengthy, I’ll try to shorten it. I have 6 children, 4 boys-1 with ADHD, 1-typical, 1-with ADD and 1-with ASD and 2 typical girls (supposedly). My brother-in-law was diagnosed with Asperger’s about 5 or so years ago, I believe my husband has it also (undiagnosed) and I have seen my youngest 19 year old daughter struggle with her depression/anxiety and so called borderline personality disorder, I truly believe that she has ASD also. So far she has be evaluated 3 times with no ASD, but with the mentioned diagnosis. She to began cutting like Maya (in this article), I found out in her freshman year of high school. It devastated us, we didn’t know what to do. I search for therapy for her and found it. Years later she still cuts and is on medication. We are going through Kaiser for a re-evaluation with a specialist in ASD. I hope to get the answers I am looking for, to better understand why she is the way she is. It will not change anything but will better explain to the family the reason she is the way she is. Good luck to you, and never give up because mother knows best. We as mothers have our instincts that never fail us.

      • Jay says:

        Sadly for many with ASD, cutting becomes their way of coping with the torture of sensory processing issues. The pain of cutting is the only coping mechanism that works to distract them. Too many psychs miss this though and wrongly label them with personality disorders instead of helping to treat the sensory problems

        • Cecilia Virgen says:

          Hi Jay, well guess what since my last post my daughter has had yet more diagnosis; Communication disorder, because it is the closest to ASD according to Kaiser specialist. The interesting thing about our experience with them was that I spoke up about everything that I have been reading about the DSM being gender biased as far as the criteria focusing inmates and not on females. He even said he appreciated my honesty about my daughter’s symptoms and not lying about them to get that DXs. He said that maybe in the future if the DSM is revised or they add to it they might be able to include more criteria based on both genders. Since girl’s symptoms, specially the higher/milder are so different than the boys.
          Then just recently she saw another Psychiatrist at Kaiser and diagnosed her with Avoidant Personality Disorder. Honesty, I never heard of it. I have read up on some information about it and it just seems that all the disorders given to her overlap in one criteria or another. She had been seeing an individual therapist that is familiar with individuals on the Spectrum and she is happy about it, but now with the new Dxs of APD she is not sure about her since therapist does not know anything about it. She is seeing her every other week, but she cut again this week which she hadn’t done in a while. But she is very anxious when it comes to school. Thanks for listening, most time I have no one who understands.

  10. Ettina says:

    I sympathize with parents worrying about the safety of their nonverbal adult daughter, but banning men from providing care is not the solution. Women can be abusive too, so such a sexist approach will not eliminate risk of abuse.
    My thoughts on how to protect her:
    a) what AAC methods, if any, have been tried? I know far too many nonverbal individuals who reach adulthood without any real attempt to teach them to use any communication other than speech. All nonverbal individuals, regardless of cognitive ability (which is hard to assess in this group anyway), need to be offered a communication system with core vocabulary, along with appropriate education to learn how to use it. If she can communicate, she’ll be able to speak for herself and report any inappropriate behavior.
    b) limiting the number of different people involved in intimate care. The more people provide intimate care, the greater the risk that one of them will be abusive. And if this care is provided only by people who are well known to the individual, then it’s easier for them to learn rules of privacy. Why worry about being naked with a stranger if that happens everyday anyway?
    c) respect her right to say no, especially when it comes to her body. She may not speak, but she can say no with behavior. As much as possible, this should be respected. Too often disabled individuals are taught to be compliant regardless of how they feel about what they’re doing. One of the big problems with this approach is that they will be just as compliant to an abuser as they are to anyone else.
    d) have her in a center with patients who can speak, and check in with those patients. A fellow patient is more likely than a staff member to report inappropriate care to a family member. They have less loyalty to the program and the workers.

    • Otter jesus DMCA says:

      If someone tried to ban women from providing care they’ve be labeled a misogynist.

      • NorahW says:

        Well, the poster you replied to has just said that banning men is not the answer. I thought that was a bad idea when I read it too. Furthermore, it’s not supported by the union or the facility that the young woman lives in. So apparently banning men isn’t exactly seen as kosher either.

  11. incarnatus est says:

    Sad. I am on the Spectrum. I embody the fears of the mothers. I was targeted by older men when I was young who were attracted to my autism. I was also bullied at school and then in relationships. The abuse I sustained would made you cringe. Then I got sick and could not tolerate the drs because of the sensory issues. After that, I was in a disfiguring accident which was pretty much the end for me. I tried to end my life but then realized I can go back now. Though I am almost 50, I have reverted to about 12, when the trauma began, ,and I live there now, not talking, not letting people in because that is how I am safe. No one will ever come into my safe place again.
    Because I was not diagnosed when I was young, no one made any provision for me. I am now alone, often homeless with autism which is horrifying and dangerous. However, I do not try to pretend I am normal anymore which never worked anyway and for the first time since 12, I feel I can protect myself by not letting anyone in.

  12. Charley Warder says:

    This was a really interesting article for me. As a transgender girl with asperges, I often questioned whether I had asperges before I came out because I did not have symptoms like the boys on the spectrum I was supposed to be like.

    There is a lot of evidence to suggest that trans women are born with biologically female brains, so I suppose I support the theory that it is the way the female brain interacts with autism that makes us different and not just because women grew up in different circumstances, since I have these ‘female’ asperges traits but didn’t grow up as a girl.

    Once I realised I was trans, and found some information on female specific autism traits, suddenly my deviations from the typical guys on the spectrum made so much sense!!

    • Claire Cameron says:

      Hi Charley, thanks for your insightful comment. You may be interested in this story, which we published earlier this year, on how trans people with autism are redefining gender identity and what it means to have autism:

    • Jay says:

      Not just M2F trans people either. My experience is there are lots of very masculine, very hetero males out there with “female type” autism, and same with straight feminine females. Gender, sexuality and masculinity/femininity are three separate issues.

      Just as some neurotypical men who are 100% straight and/or 100% cisgender can still be very feminine, and some neurotypical women who are 100% straight and/or 100% cis can be very masculine, autistic people who are 100% straight and/or 100% cisgender can also display the type of symptoms/qualities of autism that is opposite to their gender.

      My siblings and I all have AS and are all 100% straight and cis. Yet is me and one of my brothers who display “female type” AS qualities, and my sister and other brother who display “male type” AS qualities.

      Maybe it is time we throw out all these stereotypes of “masculine” = male, and “feminine” = female, for both autistic and neurotypical, gay and straight, and trans and cis. Sure there are types of behaviours more common in straight cis women, M2F trans and gay men versus straight cis men, F2M trans and gay women, and it’s easier to label those as “feminine” and “masculine”, but can’t we all just accept that all human behaviour is a spectrum, all humans have a mix of masculine and feminine traits, and those don’t always line up with a person’s biological gender, neurological gender or their sexuality – and that is the case for both autistic and neurotypical people.

    • Otter jesus DMCA says:

      I’m not Trans these traits you speak that I have too aren’t gendered. It’s called a spectrum for a reason.

  13. Otter jesus DMCA says:

    This article is offensive and contributes to the stigmatization of autistic men. It encourages people to claim autistic men are more likely to rape, murder, and be pedophiles with 50GB of child porn on their computers.

    Autistic women are not special.

  14. Gail Garsia says:

    I’m a woman too. Only found out I’m probably an aspie at age 45, and it’s frustrating. I’ve been flapping my fingers ever since I can remember, couldn’t recognize my father at age one year because he was gone for a few days and didn’t shave, couldn’t understand sarcasm, make friends, light a match or ride a bike, went on and on about cats. And my own parents, who’d learned psychology in college, didn’t have a clue!

    The said I was just ‘like that’.

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