The first woman in space was the Russian cosmonaut Valentina Tereshkova, back in 1963. Since then, Russia has fallen somewhat behind other countries in gender equality; it’s sent only four female cosmonauts into space in the last five decades, compared to the U.S. National Aeronautics and Space Administration’s 49 women in space.
To make up for lost time, the country is now embarking on a new experiment. Yesterday, six Russian women locked themselves in a suite at Moscow’s Institute of Biomedical Problems at the Russian Academy of Sciences for the start of an eight-day experiment simulating the conditions of a space mission.
The point? To test women’s aptitude for space flight and to prepare for a potential all-female journey to the moon in 2029.
“We consider the future of space belongs equally to men and women and unfortunately we need to catch up a bit after a period when unfortunately there haven’t been too many women in space,” explained the project director Sergei Ponomarev in a press conference.
Roscosmos, Russia’s space agency, said the spacecraft for this crew is currently under construction and will be tested in unmanned flight in 2021, before the 2029 mission. The women in the simulation experiment, all of whom have backgrounds in medicine or biophysics and were carefully selected from a rigorous pool, are being tested on how well they work together, as well as their ability to perform several dozen scientific experiments.
After the announcement, Russian media bombarded the prospective astronauts with questions like how they will wash their hair, do their makeup, and survive without men. “We are doing work. When you’re doing your work, you don’t think about men and women,” one participant, Anna Kussmaul reportedly countered.
Igor Ushakov, the director of the Institute of Biomedical Problems, has nonetheless made some unusual comments on the initiative, noting: “They say that in one kitchen, two housewives find it hard to live together.”
When Nancy Larko, aged 84, went to see her doctor in Meadville, Pennsylvania, earlier this year, she thought her stomach pains was the result of something she’d eaten. Her symptoms had begun on Friday afternoon, but Larko, unconcerned, didn’t contact her doctor until the following Tuesday, after four days of discomfort. Her doctor said that it was a gallstone, but nothing to worry about; he kept her in observation overnight, then sent her home on Wednesday afternoon.
No one seemed to have noticed that Larko had had a heart attack.
Soon after she got home on Wednesday, Larko began experiencing chest pains. This time, she called her family and her doctor immediately. At the hospital, she was told that she had had two heart attacks over the past five days—and the first one had created a hole in her septum between the left and right ventricles, weakening her heart and almost completely killing the bottom part of the muscle. Two days later, Larko died.
The fact that Larko and her doctors missed her first heart attack is not an unusual occurrence—thousands of American women with heart disease are misdiagnosed every year, often with fatal consequences. Heart disease is currently the number-one cause of death among women in the U.S., killing more than all cancers combined. While men are more likely to be diagnosed with heart disease, according to the American Heart Association, women still made up slightly more than half of all its fatalities in 2011, the most recent year for which data was available. Women are also more likely than men to die in the year following a heart attack. In part, these disparities can be traced back to a bias older than modern medicine itself.
In the 1700s, the heart was linked to emotion—a vestige from the days of Aristotle, who believed that the heart was the seat of all feelings, particularly anger. The Scottish surgeon John Hunter was one of those who linked heart disease to emotional excesses. His own fatal heart attack was caused, according to his doctors, by his angry temperament.
In the late 19th century, the influential Canadian physician William Osler challenged this idea, arguing that heart disease was caused by stress, not anger. The typical heart patient, he believed, was a “keen and ambitious man, the indicator of whose engine is always ‘full speed ahead’”—a “well ‘set’ man from 45-55 years of age, with a military bearing, iron-gray hair, and a florid complexion.” For Osler, heart disease was almost a badge of honor, the mark of a hardworking capitalist man.
Multiple Risk Factor Intervention Trial, one of the first to establish a link between cholesterol and heart disease, involved 12,866 men and no women; the 1995 Physicians’ Health Study, which found aspirin to reduce the risk of heart attack, involved 22,071 men and, again, no women.
The focus on men extended to medical education as well. “When we were taught about it at medical school [in the 1970s and ‘80s], no one explicitly said, ‘This is a man’s disease,’” said the New England Journal of Medicine editor Harlan Krumholz, who started studying heart disease in young women in the early ‘90s as a medical researcher. “The case studies at that time, 20 or 30 years ago, were focusing on the man as the prototype of the problem.” Krumholz recalled the iconic drawings of Frank Netter, arguably the most famous medical illustrator of the 20th century—Netter’s illustrations, which medical students still use to learn about human anatomy and a variety of diseases, only rarely depicted women with heart disease.
The absence of female subjects in medical textbooks and in research papers means many doctors simply didn’t know how to treat heart disease in women, or even how to recognize it. Symptoms can differ by gender: Men are likely to get chest pains when they’re having a heart attack, for example, but women may instead feel discomfort in the neck, jaw, shoulder, back, or arm. Many women also experience nausea, vomiting, or a feeling similar to indigestion, as Larko did.
The Global Geography of Heart Disease
In a study published last month, Krumholz and his colleagues found that women under 55, in particular, may have symptoms that fall outside what’s currently considered typical. Among the women they interviewed, Krumholz said, “Almost all of them reported that they almost had to convince people, almost ‘sell’ the idea that they might have something serious. So many were telling us that their symptoms had been going on for a while but were neglected by the health-care system.”
Other research supports this idea. One 2005 study, for example, found that women are less likely to get tests to diagnose heart-related illnesses. And in 1999, a survey of physicians published in the New England Journal of Medicine found that doctors are roughly half as likely to recommend cardiac catheterization, a test that determines the severity of heart disease, when the patient is female. The same survey also found that women are less likely than men to get bypass surgery or balloon angioplasty to unclog blocked arteries.
Even so, the past two decades have seen some improvement. In 1991, the cardiologist Bernadine Healy became the first woman to head up the National Institutes of Health. Her appointment signaled a quiet but wide-reaching shift in how the medical establishment thought about women and heart disease: Under her leadership, the NIH began funding more studies focused on women with heart disease; meanwhile, campaigns like the American Heart Association’s Go Red for Women, founded in 2003, gathered momentum. In a 1991 editorial in the New England Journal of Medicine, Healy wrote: “Heart disease is also a woman’s disease, not just a man’s disease in disguise.”
But even with the increasing attention paid to heart disease in women over the past couple decades, it could still take some time to erase centuries of bias—not only within the medical community, but among women themselves. Many patients, like Larko, fail to realize that something is seriously wrong until it’s too late.
After Larko died, her grandson Evan Woods said, he talked to doctors and nurses about how his grandmother’s first heart attack could have gone undetected. Her symptoms were unusual, they told him; stomach pains weren’t enough to diagnose a heart attack. “How can they be unusual,” he said, “when it is more than half the population?”
In the 10th book in the original Goosebumps series, The Ghost Next Door, Hannah Fairchild is a tween on summer vacation with nothing to do but ride her bike and suspect her new neighbor of being secretly dead. It’s very much a 1993 book—she’s upset at her best friend who’s away at camp and ignoring her letters—and it doesn’t age as well as other beloved children’s books might, with a dragging story, very little action, and goofy cliffhangers. (At the end of one chapter, Hannah thinks there’s a hooded demon on her bed. At the start of the next, she sees it’s just a coat.)
Horror for Kids
So compared to The Ghost Next Door, the Goosebumps film adaptation starring Jack Black as the author R.L. Stine seems impressive. It’s got a slick adventurous feel, good scares, clever all-ages humor, and the right balance of sincerity and self-deprecation. But in another, crucial way, the earlier book feels like a much more modern work, despite being 22 years older.
The book inspired the film’s character of Hannah Stine, the author’s teenage daughter who teams up with her new neighbor Zach when the monsters in her father’s books come to life. But book-Hannah achieved a surprising amount of depth and agency in the story’s 124 pages, aimed at those with a fourth-grade reading level, no less. Meanwhile, the film reduces her to a thinly written, uncomplicated girl destined to serve only as a love interest to the main hero. In doing so, it betrays the ethos of gender equality built into the book series from the very start, and one element that made the Goosebumps series such a mega-selling phenomenon.
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“The secret of Goosebumps … was it was the first book series to appeal equally to boys and girls,” Stine told The Washington Post in 2012, on the 20th anniversary of the series, which has sold over 350 million copies. “In fact, these books were originally done for a girl audience. And then the fan mail started coming in, and it was half from boys.” Anyone who read just a handful of Goosebumps books in elementary school would find this bit of trivia unsurprising. Stine’s books regularly featured both boys and girls as likable protagonists fighting killer cameras, werewolves, or ventriloquist dummies.
The Goosebumps film likely intended to do the same—and rightly so, considering its audience on opening weekend was split evenly between males and females—but it fumbles most significantly with how it portrays its young heroine. The first big twist reveals that Hannah (Odeya Rush) is one of her father’s creations—a book character come to life. Stine tells Zach he wrote Hannah to be a good, normal teenage girl, someone to love and to act as his companion. Zach, who has a growing crush on Hannah, is devastated but agrees to hide her true identity. But it turns out that Hannah already knows: “A girl can only have so many 16th birthdays,” she tells Zach near the end with surreal matter-of-factness, before she’s swept back into a book along with the other monsters. Then comes the second twist: Stine surprises Zach by writing Hannah’s character to life again and destroying the book she came from, to guarantee she will never return to its pages. This is the happy ending; the fact that Zach will grow older and Hannah won’t doesn’t seem to be an issue.
The film dwells more on Zach’s sense of loss and existential frustration when he learns about Hannah. Meanwhile Hannah seems unrealistically at peace with it all—even though she’s kept trapped in her house, homeschooled by her paranoid dad, and forced to relocate countless times. She’s brave, funny, accessible, magical, and beautiful in the way only idealized girls can be. And she doesn’t have a say in her return to her book—Zach only realizes her fate once it’s too late. The film doesn’t try hard to make the case that Hannah’s as “real” as anyone else despite being from a book, though it easily could have. That’s Goosebumps’s implicit premise when it comes to the monsters, after all.
Compare this to The Ghost Next Door: The twist is that Hannah Fairchild herself is the ghost, and the revelation has more of an impact since she’s the protagonist, not the pretty sidekick and love interest. When she learns she died in a fire along with her whole family and was left stuck on earth without realizing it, the book makes an effort to carve out her disorientation and sense of grief.
Now, Hannah understood why sometimes time seemed to stand still, and sometimes it floated by so quickly. Ghosts come and go, she thought sadly.
It was all beginning to make sense to Hannah. The dreamlike summer days. The loneliness. The feeling that something wasn’t right.
Even earlier in the book, Hannah’s self-aware and determined—she agonizes over whether she’s doing the right thing by spying on her neighbor, she worries that he’ll think she’s crazy before concluding that maybe she is crazy. The film instead transfers all this emotional and psychological turmoil to Zach and Stine. And while movie-Hannah’s fate is controlled in the most literal sense by the men and boys in her life, book-Hannah picks her own destiny. When her neighbor is trapped in a burning house near the end of the book, she rushes into the flames to save him in an act of sacrifice that sets her free.
The film gives short shrift to its other female characters, too. The wonderful Amy Ryan (The Office, The Wire) plays Zach’s mom, but spends little time on screen influencing the plot. Jillian Bell (22 Jump Street, Workaholics), is hilarious as usual as Zach’s aunt, but her character is painted as man-crazy and desperate—and she later ends up with Stine. Zach’s dorky friend Champ has a crush on a popular girl, who appears once to make fun of him and then a second time for Champ to rescue her—and to reward him with a kiss.
Of the 10 highest-grossing films in 2015, two are kid-friendly and feature female leads: Inside Out and Cinderella. Goosebumps feels caught between the two. Its source material is a lot like Inside Out—deeply interested in the thoughts and emotions of girls. But the film itself is a lot more like the traditional and unabashedly heteronormative Cinderella—all the main characters end up in some kind of romantic relationship, which detracts from the already flat depictions of its women and girls. So when the climax of Goosebumps ends with Stine, Zach, and Champ standing around the closed book that swallowed up Hannah, it almost doesn’t matter that she returns a couple scenes later. By that point the film has already shown it doesn’t think she’s real, anyway.
In college, I had a male friend who once asked me if menstrual cycles had anything to do with the moon.
He asked it half-seriously, with a sheepish tone that implied he didn’t really believe that the moon’s gravitational pull caused blood to ebb and flow like the tides, but, well, just making sure, there was definitely no connection there, right?
A lot of my female friends have stories like these. One of them knows a guy who thought women could choose to begin bleeding the way people choose when to go to the bathroom. One time, when she mentioned something about needing to find a tampon, he asked her why she couldn’t just hold it in.
Another friend met a man at a bar who, after spotting a pad in her open purse, asked her if it was hard for women to poop during their periods. Not a great opening line for multiple reasons, but one of them is: Over the course of their very brief conversation, it became apparent that he believed women menstruated out of their butts.
Harry Finley believes none of these things.
Finley, 70, is the founder of the now-defunct Museum of Menstruation, or MUM. For nearly 20 years, he’s operated the museum’s website, a collection of thousands of pages of menstrual memorabilia from reusable pads to old magazine advertisements. Before that, he was the proprietor of the brick-and-mortar MUM, which he ran out of his basement in New Carrollton, Maryland, from 1994 until 1998. Through it all, he believes, he’s also been a beleaguered soldier, a one-man war against the taboos surrounding menstruation.
In recent years, this war has become easier to fight. Lammily, the doll nicknamed “normal Barbie,” now comes with period accessories. This summer, a woman ran the London Marathon without a tampon, bleeding onto her running pants. HelloFlo ads are adorned with hashtags like #MakeItVagical. In 2011, a British artist created the “Menstruation Machine,” a sort of high-tech chastity belt for men who wanted to experience the feeling of having a period.
Here’s the thing, though: Most of this taboo-busting is being driven by women, who are making peace with their bodies and dragging something considered shameful into the open. Men are welcome to belong to this movement, and to contribute to it. But for Finley, that’s not enough.
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If the woman proudly embracing her period is slowly emerging as a cultural trope, it’s long predated by the trope of the man who’s laughably clueless about the whole thing.
study, researchers asked a group of college-aged men to describe how they had learned about menstruation. The responses had a few common themes, the authors observed: The men had largely picked up snippets of knowledge from female family members and, later on, girlfriends, but by and large were still fuzzy on the basic mechanics of the female reproductive system. “Boys’ early learning about menstruation is haphazard,” the researchers wrote. “The mysterious nature of what happens to girls contributes to a gap in boys’ knowledge about female bodies and to some negative views about girls.”
At any rate, it makes for okay comedy. See here, here, and here for riffs on the same idea: LOL, guys don’t get periods. It’s one model of a limited number of models for the ways men can talk about menstruation: ignorance, or an academic interest, or even a fetishistic one.
Finley’s doesn’t fit into any of the models. A man who lived and breathed period kitsch for so many years is not ignorant, but neither is he a scholar. His curiosity doesn’t stem from anything sexual, either: “With girlfriends, the subject never came up. And if it did come up, I think I would have run,” he told me. “I just wasn’t interested.”
Don’t Let Them See Your Tampons
Finley traces his interest back to the identity it created, the chance it afforded him to be a little subversive. “The museum was kind of an act of freedom for me,” he said. “I grew up in a military family doing everything right, the straight and narrow. When other kids were swearing and stuff, I never did.”
His attraction to all things menstruation began when he was living in Germany as a graphic designer for the U.S. military in the 1980s. He started collecting old menstrual-product advertisements, he said, because the artist in him liked looking at renderings of women’s faces. But as his collection grew, that appeal was supplanted by what he called “the buzz of the forbidden”—the more ads he amassed, the more he felt like he had finally discovered the rebellion that eluded him in his early life. Here, finally, was a way for him to flout the rules.
When he returned to the U.S., he began going to drugstores and buying pads and tampons; soon, he was writing to researchers and menstrual-product manufacturers, some of whom sent him menstrual cups or old belts, the kind that women used to wear to hold disposable pads. A one-off thought he had back in Germany—“As a joke, I was just thinking one day, wouldn’t it be funny to start a museum of menstruation?”—became a more serious idea, and then a goal, and then, after thousands of dollars and thousands of hours of work, the thing that lived in his New Carrollton basement and consumed him for nearly half a decade.
He kept his day job, opening the museum by appointment on weekends to lead tours for guests, most of whom were women, few of whom visited alone. “There were very few single women who came by themselves,” Finley said. “They usually came with someone else. Sometimes it was a man, and I always had the feeling they were bodyguards.” To give his collection a sense of authority, he assembled a MUM board of directors that included Philip Tierno, the pathologist who helped to identify a link between tampons and toxic-shock syndrome in the 1980s.
Partly in an effort to make visitors more comfortable and partly to embarrass the ones who snooped, he bought a box of tampons and put it in the bathroom cabinet, with a sign encouraging people to help themselves.
There’s only so long a guy can play willing host to strangers who are visibly uncomfortable in his presence. It’s an exhausting way to live, as a novelty even, or especially, in one’s own home. After a few years, it began to wear on Finley. He wrote to museum directors, asking them to take the collection. And then, when it all became too stressful and too frustrating, he tore the museum apart and placed all the items in storage. He decided to build a website about his collection, which he could update on his own time.
The Tampon: A History
Bobel, who has spoken with Finley about ways to raise money for a new home for the museum, thinks funding, not maleness, is his biggest obstacle. In fact, she thinks his gender may be a boon to eventually getting it off the ground.
But if the new museum happens, Finley doesn’t want to run it. “I don’t have to be the boss. I don’t want to be the boss. I understand the objections to that,” he said. He imagines his collection as a themed wing of a larger women’s-health museum, something he can support from a greater distance. “I could be a board member, and maybe have Men’s Night every Wednesday or something … If they aren’t hostile to men, if they don’t discourage men from coming in, it could be a tremendous thing.”
When I think about it—about a Men’s Night at a women’s-health museum, about my colleague’s answers, and about my own discomfort—I think of this: A few months ago, during a weekend with my boyfriend’s family, his sister asked us to pick her up some tampons when we went on a grocery run. When I grabbed a box with cardboard applicators, my boyfriend all but knocked it out of my hands.
“Those are like sandpaper,” he said. “Get the nice ones.”
In a weird way, it’s a sweet story. Here’s a guy who a) cares about his sister, and b) is mature enough to acknowledge that his sister has a vagina without making a fuss about it.
But also, here’s what I hate: that I still felt the need to preface that with in a weird way. Yes, his sister’s vagina is, conceptually, an awkward combination of words. But on the other hand, why should he care about her discomfort any less just because it happens to be in that part of her anatomy? And why, in a story about a man and a woman and a box of tampons, is the woman the one who can’t be a grownup about it?
This is what Finley believes he’s up against—people like me, who see strangeness where they should see compassion. The writer Ann Friedman may have summed it up best when she shared a recent Vice profile of Finley in her weekly newsletter: “I wish I wasn’t so creeped out by the man who runs a menstruation museum out of his basement.” She wishes. But she is.
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In a note on an earlier version of this story, my editor wrote: “Is he a bridge to a better future? Or an eccentric symptom of our crappy present?”
I know Finley used to think he’s the former. I know he no longer does. I would say he’s more the latter, I guess, but even that doesn’t really seem to fit. The clueless bro is a symptom; Finley is something else, a little more tragic and infinitely more frustrating.
People talk about “reclaiming periods”—and implicit in that is the idea that there’s someone to reclaim them from. That’s Finley’s problem: In an narrative of Lammily dolls and women who bleed through marathons, there’s not a model for a male savior. As well intentioned as he may have been—and he was well-intentioned—he, not menstruation, became the taboo he was fighting against. He was always trying to tell a different story.
It’s unclear if he still wants to tell it. For a brief window earlier this week, the thousands of pages of the MUM website temporarily vanished. In their place was a note from Finley. “These were the best, most exciting things I’ve done,” it began. “[The museum] opened many eyes and minds, including mine.”
But “to avoid further nastiness,” he continued, “I’m eliminating the museum.”
He signed off: “MUM was the word!” A nod to the museum, and also an order, or a promise, to keep something quiet—it felt like a fitting eulogy.
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.”
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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.
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.”
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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.”