I learned I was autistic in 2015, when I was 45 years old. I had been autistic my whole life, of course—why did it take so long to find that out?
From age five, I knew I was different from my peers. I couldn’t understand how other girls spoke or thought. (When they pretended to feed dolls or rock them to sleep, it made me queasy to imagine the inanimate lumps of plastic as babies.) These girls talked to one another all the time, but didn’t seem to exchange any actual information—I couldn’t see the point of a conversation unless it was to give or receive facts. I knew that the way I experienced these situations was inherently “wrong,” and I thought I had to do everything in my power to blend in. It went that way for decades.
My route to diagnosis was complicated. As with many autistic people, I had extreme sensory issues, so I was unable to cope with loud noises, strong smells, and bright lights, which gave me migraines. I felt overwhelming fear a lot of the time, and couldn’t understand or identify my emotions. When I saw doctors about my difficulties, I was told off for wasting their time or misdiagnosed with a host of things, including generalized anxiety disorder and (my favorite) bad luck.
Shortly before my autism diagnosis in 2015, I was (correctly) diagnosed with a connective tissue disorder. While I underwent tests, I began sobbing uncontrollably because the tests were very intense, the room was too hot, and the lights were way too bright. A nurse recognized this as not a tantrum, but the effects of sensory overload on an autistic person. I initially dismissed the nurse’s interpretation. Upon further investigation, I found thousands of women like me online. They described trouble with workplace politics, the inability to socialize in a group, and finding they simply couldn’t navigate life’s unwritten rules. It was as if they were describing me. Soon after, I received an accurate autism diagnosis.
The delay in proper diagnosis may have to do more with my gender than with the expressions of my traits: When it comes to autism research and recognition, autistic women are left behind. There is no consensus on the statistical gap in autism as it occurs in men and women, but it’s understood to be significant: A 2017 study published in the American Academy of Child and Adolescent Psychiatry suggests around three men for every one woman are autistic, but that research impacting diagnosis often assumes the ratio is four men to every one woman—and that the variation between studies indicating this can be significant. (The National Autistic Society in the UK clarifies that the ratio of diagnosed men to women has been variously reported in a range between 2:1 and 16:1.)
Francesca Happé, director of the Social, Genetic and Developmental Psychiatry Centre at King’s College, believes hundreds of thousands of women and girls are currently undiagnosed. She is using a grant to investigate gender differences in autism, which she and many others feel is long overdue.
In an interview for Broadly, Happé tells me, “Research on autism has systematically neglected and excluded women and girls—researchers often thought that they’d get so few women that they left them out entirely.”
Many diagnostic tools that use interviews, specific tasks, and the categorization of behaviors resulting in quantitative scores for autism analysis were developed according to male phenotypes. The basis for this dates to the origins of autism’s known history. Leo Kanner’s pioneering 1943 research on autism was based on a study of three girls and seven boys. Hans Asperger studied only boys affected by the syndrome he described in his 1944 book about the spectrum. “What we think we know about autism is what we know about male autism,” Happé says.
Prevalent modern autism studies have focused on trying to prove the contentious “extreme male brain theory,” which is based on the idea that autism is the result of having a brain that systemizes rather than empathizes. These studies have not been particularly helpful in understanding why so many women and girls with autism are misdiagnosed, or simply overlooked.
A longstanding gender bias in research is not the only inclusivity issue women with autism face. Cultural representations of autism recall geeky men, or boys lining up toy trains—think of characters like Raymond Babbitt in Rain Man and Christopher in The Curious Incident of the Dog in the Night-time. Raymond has extraordinary counting abilities and an intense interest in numbers, and Christopher spends much of his time at home engaging in mainly science-based hobbies. While autistic girls often have interests of similar intensity, they tend to be in line with those girls are commonly socialized to explore. For example, they might focus on a particular boy band, horses, or makeup. The difference is that the autistic girl will know literally everything there is to know about the band.
Part of why I didn’t recognize my own autism was because I am hopeless at math and science, and, as a writer, I literally communicate for a living. Plus, I’m a woman: The few people I had ever come across who were diagnosed as autistic were men or boys, and I didn’t see anything of myself in them.
Autistic writer Sara Gibbs says, “Mainstream representation of autism in entertainment has been predominantly male,” she says. “When it was first suggested that I might be autistic, the profile of autistic women was so unfamiliar to me that I dismissed the idea out of hand.”
It’s not just the perception of autistic people in entertainment, but the social perception of girls and women themselves, that may contribute to their underdiagnosis. “Autistic meltdowns can look like tantrums, and due to being extremely emotionally sensitive or being overwhelmed by sensory input, girls and women can be dismissed as hysterical, overreacting, or as drama queens,” Gibbs says, touching on longstanding tropes meant to undermine women’s experiences: Hysteria was used in the United States as a catchall medical diagnosis for women’s health issues and only declassified as a mental disorder in the US in the second half of the 20th century. The stereotype lingers, though—and has a lasting impact on autistic women, says Gibbs: “Behaviors that parents would investigate in boys are ignored in girls because it’s ‘just how they are.’”
Going undiagnosed for so long had a profound impact on my well-being. In my teens, I was misdiagnosed with something called hyperventilation syndrome and prescribed very addictive tranquilizers. I ended up in rehab for three months. Alongside my knowing something was wrong but no doctor having been able to help, I began to suffer from anxiety, had frequent panic attacks, and became hypervigilant about every physical sensation I experienced.
Happé says late diagnosis contributes to autistic women suffering from depression and anxiety. “We know enough to say that late diagnosis is detrimental to mental health,” she says, and her research suggests that this comes in part from women with autism "camouflaging" their symptoms into adulthood. “Since we know that on average women and girls get diagnosed later than men and boys, it wouldn’t be a surprising conclusion that their mental health suffers more.”
For Gibbs, late diagnosis included a lack of credulity from others. “Several people in my life saw my autism diagnosis as a cry for attention, as opposed to seeing symptoms that led them to believe that as part of autism,” she says. “Whenever I see someone I haven’t in a while and explain my diagnosis, I always brace for their challenging it—which is often silenced by my husband backing me up.”
While there is a swath of women like me, school-age girls continue to experience delayed diagnosis. Broadly spoke to Natasha Harding, the mother of a young autistic daughter who believes her daughter would have been diagnosed quicker had she been a boy.
“Lexi lashed out at people and was very solitary,” Harding says. “Her speech was non-existent, but the first time I went to the GP about it, they said it was typical toddler behavior. At her two-year check-up, she wasn’t speaking at all and wouldn’t follow any of the instructions the health visitor gave her. Still, they said she was completely fine.” Eventually, Harding got a private educational psychologist to asses Lexi at preschool, and they began to talk about autism.
Emily Swiatek, an autistic employment consultant for the National Autistic Society, feels there is a more positive future to look forward to. She says intersectional feminist movements are galvanizing autistic women to advocate for themselves, and “find deeper levels of connection and solidarity in the same way we see within the body-positivity movement.”
For Swiatek, this has personal resonance. “Getting my diagnosis opened me up to have much greater female friendships, and a lot of them are around feminist issues. Like other areas of intersectionality, we need feminism that’s open to autistic women, and to remember, too, that this isn’t just about white autistic women." (To add to Swiatek's point concerning intersectionality: Neither does inclusivity only matter to cis autistic people—gender-dysphoric people with autism are also gaining new and necessary recognition.)
I don’t think autistic women have been consciously excluded from feminist movements—it’s more that we haven’t been central to anyone’s thinking. That appears, however, to be changing: Social media campaigns like Nicola Clark’s #SheCantBeAutistic are publicly collecting and challenging “dismissive responses women have received from clinicians, friends and family,” as Clark wrote recently in The Guardian.
Highlighting the way autistic women and girls have been dismissed may make a difference in diagnosing autism in girls and women, as could new research like Happé’s. Additionally, primary care doctors need to be trained in how to spot autism in girls, and we desperately need more fictional depictions of female autism and for more autistic women and girls to tell their own stories so it becomes something we easily pick up on and recognize. People like me shouldn’t have to wait decades for a diagnosis that will help them make sense of their lives.
Odd Girl Out: My Extraordinary Autistic Life, a memoir by Laura James, is out now from Hachette Book Group.