Hannah Belcher and her mom walked into an assessment meeting with a young doctor. Together, they answered the physician's probing questions: was Hannah good at making friends? What about the little oddities in her behavior—her dislike for particular colors and textures, especially things that were moist? Then they talked about her preoccupation with certain books and movies and her trouble understanding other people’s emotions.
After three hours, the doctor said, “Usually I need some time to go through the evidence or talk it through with my supervisor, but I think the evidence is pretty conclusive.” Hannah had Asperger’s Syndrome. What may surprise you is that Hannah and her mom weren’t at the assessment because of a referral from a pediatrician or concerns from an alert elementary school teacher. As a matter of fact, Hannah was a 23-year-old woman with a psychology degree when she found out she was on the autism spectrum.
Hannah tells that story on her blog, Aspertypical, which she writes while working on her PhD. She’s not alone: females are usually diagnosed with autism a bit later than boys, and for a few women, the condition is missed until they’re in their twenties or thirties—or even beyond.
The reason for this is partly rooted in the story of how scientists 75 years ago took the first steps to find answers for families struggling to help their children. But ultimately, it’s because men and women are different, and often, so is how they experience autism spectrum disorder, or ASD.
In the beginning: all about the boys
When psychiatrist Leo Kanner produced a small study in 1943 that described autism for the first time, there were almost three times as many boys represented in his research as there were girls. Hans Asperger, for whom the so-called “high functioning” version of autism is named, published his own study in 1944, which looked only at boys. It makes sense, then, that as experts developed tools for diagnosis, they’d mostly be looking at characteristics of the males who were so heavily featured in the early research. Given that boy-influenced profile of autism, it’s not surprising that today four times more boys than girls have been diagnosed as having ASD.
Initially, some people believed girls couldn’t be on the spectrum at all; later, a consensus formed that ASD was just more rare in women, and when it did occur, was more severe. But as time goes on, experts are realizing that autism in women is not necessarily either of those things. It’s just different from autism in men.
Those differences often allow a woman to “pass” as neurotypical. For example, she may not be involved in the stereotyped “special interests” associated with ASD, such as trains or computer games. Instead, a woman’s interests may center on the arts or media with fantasy elements, like Disney movies or Lord of the Rings. Women on the spectrum bring an intensity to their hobbies that distinguishes them from their typical peers, but if those hobbies are acceptably “girly,” their wider community may not recognize how unusual they are.
What’s more, studies have also shown that women with autism are more motivated to socialize than men with autism. On their own, they can pick up skills to help them navigate the neurotypical world, though it may cost them an exhausting level of effort. Dr. Cynthia Martin, a clinical psychologist at the Child Mind Institute’s Autism Center, told me about one such example from her practice.
“A young girl I recently evaluated walked into my office with a big smile. She made eye contact, responded to my greeting, and then proceeded to ask if I like puppies, before telling me about a time that she helped watch her neighbor’s puppy. Had I not known better, I would have thought this little girl had excellent social skills!” Dr. Martin said. “I knew though, from her mother, that she always does well with greetings and that she tells everyone the exact same story. The story was not of her own personal experience, but instead from an episode of a cartoon.”
Boys with a developmental disorder may express their frustration with anger, which attracts immediate concern and attention. But girls are trained by society to appease, not get mad—and that includes girls with autism. “When girls are more cooperative and less disruptive, they are less likely to be referred for an evaluation even if they are struggling with social communication and social relationships. In other words, their vulnerabilities are masked by their strengths,” Dr. Martin notes.
In her book, Autism in Heels: The Untold Story of a Female Life on the Spectrum, Jennifer Cook O’Toole describes how women do their best to blend in with their neurotypical peers, using an arsenal of strategies to camouflage their social struggles. To avoid eye contact without bothering her conversational partners, O’Toole looks into the middle distance and angles her head just-so to convey a sense that she’s listening. She learned to do this through her involvement in the theater world—and indeed, being a woman with ASD often means living life as a sort of actress, memorizing social rules almost as though they are stage directions, or copying the dialogue from movies or TV shows. O’Toole, by the way, was diagnosed at 34.
One consequence of camouflage that’s perhaps too successful is that women with autism struggle not just to get a diagnosis but to have others accept that their condition exists. They can receive a string of misdiagnoses—being labeled with depression, borderline personality disorder, or anxiety disorders—and spend years treating those conditions, only to discover later on that all those were secondary sufferings influenced by the real obstacle: ASD.
Sarah Hendrickx was inspired to write her book, Women and Girls with Autism Spectrum Disorder, after she brought her son in for his own assessment appointment. She mentioned to the psychiatrist the family’s extensive history of autism, including her own position on the spectrum, which she learned of at age 43. She wrote about what happened next.
The psychiatrist questioned my diagnosis, asking who had diagnosed me. He asked how I could have autism because I didn’t look like I had autism and I was having a two-way conversation with him. I replied that maybe it’s because I’m an adult and a woman. He looked at me incredulously and said, with obvious contempt, "Are you trying to tell me that being a woman makes a difference?" . . .
I knew there was nothing I could say. I shut up and hoped that we could just continue what we had come for. I waited until we had left the room before I cried and exploded with frustration. I wish this was the only occasion where I have had to justify my diagnosis because I don’t look autistic enough, but it isn’t and it won’t be.
Besides the struggle to wrest a diagnosis from a world that too often sees autism as a men’s issue, the intersection of womanhood and autism presents its own unique puzzles. Perhaps the most potent struggle: relationships.
“I’ve found in my experience that I’m a lot more trusting than my neurotypical peers, and this leads me to not always see when someone has duplicitous intentions,” Amy Gravino told me. She’s a certified autism specialist, writer, and consultant who’s been diagnosed since age 11. “I believe what people say up front, because I’m very up front. That leads to a lot of women on the spectrum being taken advantage of. When people can see your heart so clearly, it’s so much more vulnerable to being broken and being abused.”
Research has repeatedly found that people with autism are sexually victimized at stunningly high rates, sometimes two to three times the rate of the general population. It’s not just an inability to read social cues that poses a threat: the social isolation women on the spectrum often experience puts them at risk, too.
“Because we often don’t have a lot of the same learning experiences we can end up in abusive relationships not even realizing they’re abusive,” Gravino says. “We don’t always realize what abusive behavior even looks like. We think, ‘If a guy wants to always know where I am and whom I’m with, that must mean he really cares about me!’ Or, ‘I don’t know what I’m doing, therefore I have to listen to him.’”
In Autism in Heels, for example, Jennifer O’Toole describes a gift her then-boyfriend once gave her before she went on a beach vacation: a white undershirt with “Hands off, I have a boyfriend” hand-painted on the chest and the word “Taken” on the back. “God help me, but I thought it was the cutest, most romantic thing ever,” she writes. She had a friend take a picture of her wearing it as a souvenir.
“Often times women on the spectrum are made to feel they aren’t allowed to have standards,” Amy Gravino says. “That makes us vulnerable, because we’re accepting any crumbs that are thrown at us, at the same time not realizing how much danger we could wind up in.”
Friendship, fraught with peril
From an evolutionary perspective, friendship for women is a survival strategy. By forming alliances with each other, we can protect ourselves and our families even though we usually aren’t as physically powerful as our guy counterparts. But for women with ASD, navigating those relationships with female peers is not easy.
For one thing, the same vulnerability that can make women on the spectrum easy prey for sexual abusers also puts them at risk for bullying and exploitation from “friends.” They can be manipulated by “mean girls” into humiliating themselves or even taking part in bad behavior, and then be convinced to take the rap when their friends get caught. Liane Holliday Willey, who was diagnosed at age 35, devotes an entire chapter in Safety Skills for Asperger Women: How to Save a Perfectly Good Female Life to dispensing advice on how to socialize safely, admitting that “it took me decades before I could openly admit how many times others had victimized me.”
“My best friend is a woman and is a wonderful person, but it’s not been easy,” Amy Gravino told me. “One of my biggest fears is that I’ll eventually drive away all of my friends, just by virtue of being the way that I am . . . the other thing that I’ve had to learn is that sometimes a friendship might end, and it’s not my fault. Many autistic people operate from a place that if something goes wrong, it’s automatically my fault—I’m the broken one, the autistic one. It took me a very long time to get out of that head space and realize it’s not necessarily my fault if a friendship goes belly-up.”
Gravino has struggled with friendships that ended abruptly and without explanation, being ghosted by a former close confidante who dropped her cold. “For me, that’s absolutely the most devastating thing, to not know why,” she says. “Because how on earth can I know what I did wrong if nobody says, ‘This is what happened?’ ‘I don’t deserve to have friends, I’m too difficult to love’—that’s what I believed about myself for a very long time.” With hindsight, she gained the perspective that she is not responsible for carrying the burden of toxic friendships.
Gravino has leveraged her insights on the ASD experience in her busy life as a TEDx speaker, coach, consultant, and writer. She’s authoring a memoir about her experiences navigating the landscape of relationships and dating as a woman on the spectrum. Addressing women who may be seeing an image of themselves emerging in this description of autism, she says, “I know it’s scary. But if this is a part of who you are, you’re still the same person you’ve always been. This just helps to fill in those missing pieces. And know that the journey is different for everyone. There’s no one way to be a person with autism.”