Autistic Women and Gender Diverse People Are Often Diagnosed Late—Here’s Why
- Tara Killen, MS, Tara Killen is an autistic therapist and the founder of Thriving Autistic.
- Tasha Oswald, PhD, Tasha Oswald, PhD is a neurodiversity-affirming therapist and founder of Open Doors Therapy.
But not every autistic person has an experience like mine. First, a brief recap: Autism is characterized by differences in communication, repetitive behaviors, and sensory processing. It's most often diagnosed in kids, which is why when people think about autism, they typically imagine a child: most likely a boy, probably white, and either minimally speaking or very talkative about a subject of their choice. While autism spectrum disorder (ASD) is identified in about 1 in 54 children, not everybody has the tools, family support, or education to receive childhood diagnoses—especially those who are further marginalized by race and gender. Historically, boys are four times more likely to be diagnosed, girls are identified and diagnosed later than boys, and Black and Latinx children are also diagnosed later due to healthcare biases.
All of that explains why many autistic people don't receive a diagnosis until adulthood. Late-diagnosed autistic adults often report feeling different from their peers, and many embark upon a self-discovery quest for answers. Adult identification is beginning to focus more on including women and nonbinary people, since gender diverse people are more likely to report autistic traits and undiagnosed autism than their cisgender counterparts. The landscape of autism is changing, as well as our definition of who is autistic.
For women, getting diagnosed can come with unique challenges. Tara Killen, MS, an autistic therapist and the founder of Thriving Autistic, a nonprofit supporting autistic adults, says, “While women have historically been underdiagnosed, there is not a ‘female presentation’ of autism.” Killen explains that the notion of a “female presentation” comes from the idea that the intense passions of women and girls are seen as socially acceptable, and we’re viewed as high masking and high camouflaging—often out of necessity for personal safety and conditional social acceptance. “It isn’t just women who present like this,” Killen adds. “It’s also trans men who have been socialized as women, or men, or nonbinary people.”
The landscape of autism is changing, as well as our definition of who is autistic.
Adriana White, a 37-year-old Latinx autistic librarian and children’s book writer, agrees. “Gender identity is a spectrum; many autistic people don't fit neatly into that traditional gender binary," White says. "I personally was a very tomboyish girl who preferred sports and video games, but I was still judged by people's expectations of girls. Most people saw me as just an extremely shy and quiet girl, and they had no idea of the level of anxiety I had going on in my head." White learned to mask so well that the possibility of being diagnosed with autism was small. In fact, White was misdiagnosed with bipolar disorder before receiving an ASD diagnosis.
Killen says misdiagnoses are common, primarily those of borderline personality disorder and bipolar. While it’s possible to be autistic and have co-occurring conditions, she says these other diagnoses are consistently misapplied to autistic adults when they reach autistic burnout in work or school. “Burnout happens when our capacity is outweighed by the demands of the environment," she says. "For autistic people, it has a very different recovery path.”
Tasha Oswald, PhD, a neurodiversity-affirming therapist and founder of Open Doors Therapy, agrees, but notes the experience of a burnout may look different for women and gender diverse autistic people. She says to think of this burnout as the accumulation of all the invalidation they've faced in life. "It’s an exhausting process," Dr. Oswald says. "They walk around with a lot of shame and have what looks like a breakdown for a lot of them.” For some people, Dr. Oswald says, burnout can lead people to seek out mental health services—and that may ultimately lead to learning more about autism.
How (and why) adults learn that they're autistic
For many autistic adults, self-discovery leads to an official diagnosis—and it's been happening more frequently due to the pandemic, Killen says. In lockdown, many adults began working from home in their own environments. "[They] were finding they were so much happier and didn’t have to try and do all the things and try to meet the social expectations that they normally have to meet,” Killen says. That led some people to attempt to figure out why this was the case.
Curiosity led White, the librarian, to discover that she was autistic about five years ago; it happened after wanting to learn more about autistic students who didn’t fit the mold of young, white males. “The more I read, the more sure I became that this was the reason why I had always felt so odd and so alone for so long,” she says. When White shared her autism diagnosis with her family, it led to a sort of a-ha moment for everyone: White’s mother suspected that she herself may be autistic, as well as an older cousin. “My family didn't know what autism was back in the '70s and '80s, and professionals weren't really looking for autism in Puerto Rican girls," White says.
"Professionals weren't really looking for autism in Puerto Rican girls." —Adriana White
Dr. Oswald notes that for a lot of autistic people who are marginalized by either gender or race in particular, their masking is misinterpreted as being shy and sensitive—to avoid being thought of as difficult or strange. “They’re trying to fit in with the white, heterosexual culture," Oswald says. "It’s another level of masking in addition to gender and race. It’s so important to recognize the different levels of masking going on.”
Some autistic people may choose to receive a formal diagnosis, but it can be a long and challenging process. Erin Sweeney, a 42-year-old IT professional, writer, and streamer felt she needed to know the answer to understanding her neurology. She says that receiving a formal diagnosis was like “that same lightbulb moment that I had when I came out as trans.” Getting to that point took decades, she says. Although her parents knew she was autistic when she was 8 years old, stigma kept them from telling her or pursuing services to help. “Because of that decision, I spent 30 years masking—being bullied, not knowing who or what I was, in pain, confused, lost,” she says.
Sweeney, who is transgender, also faced judgment from doubtful professionals. "[It became] a trend that increased proportionally to my number of psych visits, incidents, and prescriptions, which then also amplified when I transitioned and began presenting femme,” she says. Before ultimately being diagnosed with autism, she went through multiple misdiagnoses and prescription treatments to, as she puts it, "figure out what had already been discovered."
"I spent 30 years masking—being bullied, not knowing who or what I was, in pain, confused, lost." —Erin Sweeney
While most think of self-diagnosis or formal diagnosis as a personal situation dependent on feelings and finances, circumstances differ across the globe. Hazan Özturan, a 30-year-old who lives in Turkey and identifies closest to autigender, explains that where ze lives, it is almost impossible to access formal diagnosis. “There is no clear way to get a diagnosis," ze says. "The closest thing to a diagnosis is a disability report, which may or may not be renewed when the person is an adult.” Still, ze would like a formal diagnosis if possible, though ze is unsure if it is an option in zir country.
The power of autistic pride
In a world that often focuses on the suffering that disabled people face, the sense of pride that autistic people experience upon receiving diagnoses is life-changing. A discovery shared online can mean being flooded with congratulatory messages from other autistics, in stark contrast to the pity that some neurotypicals might share.
“Autistic pride is life-changing in so many ways,” Dr. Oswald says, reporting that many of her clients feel a weight has been lifted off their shoulders, and they feel a lot of their fears may no longer hold them back. Sweeney feels immense pride as an autistic and trans person. “Since my self-discovery and exploration, and my determination to live ‘unmasked’, I’ve found a ton of joy in the aspects of myself that I used to cover up,” she says. “I’m finding that I love talking and socializing – providing my needs are accommodated. This has led me to start streaming my video game play on Twitch, and a possible new avenue of skills and supporting myself that I’d been unaware of.”
Having that sense of community and pride has led people who discovered they were autistic later in life, to feel that they have a place they belong—and that is invaluable. “Knowing I’m autistic greatly improved my mental health,” White says. Rather than feeling broken or flawed, adult autistics find that their diagnosis can help them create the happier, healthier lives they—we—deserve.
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