Autism in adult women often comes with late diagnosis

B.n 1997, when I was 3 years old, my parents recognized that having a daughter who did not speak was unusual. Originally, they thought that she might have had a hearing disorder; however, I was diagnosed with autism. That childhood diagnosis opened up answers and opened doors for me to receive special education services and interventions like occupational and speech therapy. I was eventually told about my autism when I was 9 years old, which gave me a sense of pride, identity, and awareness of my unique strengths and weaknesses. Early identification and access to services has been a great privilege that I do not take for granted.

But not all autistic people have an experience like mine. First, a brief summary: Autism is characterized by differences in communication, repetitive behaviors, and sensory processing. It is most often diagnosed in children, which is why when people think of autism, they usually picture a child: most likely a child, probably white, and who speaks minimally or speaks a great deal on a topic of their choosing. While autism spectrum disorder (ASD) is identified in about 1 in 54 children, not everyone has the tools, family support, or education to receive childhood diagnoses, especially those who are even more 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 Latino children are also diagnosed later due to health care 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 on a quest of self-discovery for answers. Adult identification is beginning to focus more on including women and non-binary people, as gender diverse people are more likely to report autistic traits and undiagnosed autism than their cisgender counterparts. The autism landscape is changing, as is our definition of who is autistic.

For women, receiving a diagnosis can present unique challenges. Tara Killen, MS, autistic therapist and founder of Thriving Autistic, a nonprofit organization that supports autistic adults, says, “While women have historically been underdiagnosed, there is no ‘female presentation’ of autism.” Killen explains that the notion of a “feminine presentation” stems from the idea that the intense passions of women and girls are considered socially acceptable, and we are seen as great masking and great camouflage, often out of a need for security. personal and conditional social acceptance. “It’s not just women who present themselves like this,” adds Killen. “It is also trans men who have been socialized as women, men or non-binary people.”

The autism landscape is changing, as is our definition of who is autistic.

Adriana White, a 37-year-old autistic Latinx librarian and children’s book writer, agrees. “Gender identity is a spectrum; many autistic people don’t fit neatly into that traditional gender binary,” says White. “Personally, I 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 an extremely shy and quiet girl, and they had no idea the level of anxiety I had in my head.” White learned to mask so well that the chance of being diagnosed with autism was small. In fact , White was misdiagnosed as having bipolar disorder before receiving an ASD diagnosis.

Killen says misdiagnoses are common, primarily those of borderline personality disorder and bipolar disorder. While it is possible to be autistic and have co-occurring conditions, she says these other diagnoses are incorrectly applied to autistic adults when they reach autistic burnout at work or school. “Burnout occurs when our capacity is outstripped 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 that the experience of burnout may look different for women and gender-diverse autistic people. She says to think of this burnout as the accumulation of all the invalidations you’ve faced in life. “It’s an exhausting process,” says Dr. Oswald. “They walk around with a lot of shame and have what looks like a meltdown for a lot of them.” For some people, Dr. Oswald says, burnout can drive people to seek mental health services, and that can ultimately lead to learning more about autism.

How (and why) adults learn they are autistic

For many autistic adults, self-discovery leads to an official diagnosis, and it’s been happening more often because of the pandemic, Killen says. In lockdown, many adults began working from home in their own environments. “[They] they were finding that they were much happier and that they didn’t have to try to do all the things and try to meet the social expectations that they normally have to meet,” says Killen. That led some people to try to find out why this was so.

Curiosity led White, the librarian, to discover that she was autistic about five years ago; she 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 certain I was that this was the reason I had always felt so strange and alone for so long,” she says. When White shared her autism diagnosis with her family, there was something of a surprise moment for everyone: White’s mother suspected she might be autistic herself, as did an older cousin of hers. “My family didn’t know what autism was in the ’70s and ’80s, and professionals weren’t really looking for autism in Puerto Rican girls,” Ella White says.

“Professionals weren’t really looking for autism in Puerto Rican girls.” —Adriana Blanco

Dr. Oswald points out that for many autistic people who are marginalized by particular gender or race, their masking is misunderstood as shy and sensitive, to avoid being thought of as difficult or strange. “They’re trying to fit into white straight culture,” says Oswald. “It’s another level of masking besides gender and race. It is very important to recognize the different levels of masking that exist.”

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 broadcaster, felt she needed to know the answer to understand her neurology. She says receiving a formal diagnosis was like “the very moment the lightbulb went off 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 prevented them from telling her or seeking services to help. “Because of that decision, I spent 30 years masking: being stalked, not knowing who or what she was, in pain, confused, lost,” she says.

Sweeney, who is transgender, has also faced trial by dubious professionals. “[It became] a trend that increased proportionally to my number of psychiatrist visits, incidents and prescriptions, which then also amplified when I transitioned and started presenting as femme,” she says. Before finally being diagnosed with autism, she went through multiple misdiagnoses and prescribed treatments to, as she puts it, “discover 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 that depends on feelings and finances, circumstances differ around the world. Hazan Özturan, a 30-year-old man who lives in Turkey and identifies more with the authigender, explains that where he lives ze it is almost impossible to access a formal diagnosis. “There is no clear cut way to get a diagnosis,” he 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 he’s not sure if it’s an option in his country.

The power of autistic pride

In a world that often focuses on the suffering faced by people with disabilities, the sense of pride autistic people experience upon receiving a diagnosis is life-changing. A discovery shared online can mean receiving a flood of congratulatory messages from other autistics, in stark contrast to the pity some neurotypicals may share.

“Autistic pride is life changing in many ways,” says Dr. Oswald, reporting that many of her clients feel like a weight has been lifted from their shoulders and feel like many of their fears can 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 have found much joy in the aspects of myself that I used to hide,” she says. “I am finding that I love to talk and socialize, as long as my needs are accommodated. This has led me to start streaming my video games on Twitch, and a potential new avenue of skills and support that I was unaware of.”

Having that sense of community and pride has led people who found out they were autistic later in life to feel like they have a place where they belong, and that’s invaluable. “Knowing that I am autistic greatly improved my mental health,” says White. Instead of feeling broken or flawed, autistic adults find that their diagnosis can help them create happier, healthier lives that—us-deserve.

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