by Amy Stewart
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 United States, 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.
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 5:00 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.
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 w
omen 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.”
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.”
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?”
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 had 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’s 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 earplugs. 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.”
CHARLES C. MANN
Solar, Eclipsed
FROM Wired
A FEW MINUTES AFTER I meet E. V. R. Raju, a vision pops into my head. I can see him on one of those lists of the World’s Most Important People released by the likes of CNN, Forbes, and Time. Besides the obvious entrants like the president and the pope, the lists always also include a few buzzy, click-generating names: Emma Watson, perhaps, or Bono. Raju is certainly not in either of those categories. He is the environmental manager of a coalfield in northeastern India.
The Jharia coalfield, where Raju works, is India’s biggest and most significant, covering some 170 square miles. It has been on fire, calamitously, since 1916; entire villages have collapsed into the smoking ground. Raju’s job is to put out the fire, so that his company can roughly double the mine’s output in the next five years. Whether—and how—he can perform this task will have much more effect on the future of the world than anything, with all due respect, likely to be accomplished by UN-addressing actresses or aging Irish rock stars. In other words, if one were compiling a list of the World’s Most Important People, Raju should be on it.
