siin 1997, when I was 3 years old, my parents acknowledged that having a daughter who did not speak was unusual. At first, they thought I might have a hearing loss. however, I was diagnosed with autism. This childhood diagnosis unlocked answers and opened the door for me to receive special education services and interventions such as speech and occupational 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 recognition and access to services was a huge privilege that I do not take for granted.
But not every autistic person has 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 imagine a child: probably a boy, probably white, and either little or no talker on a topic of their choice. While Autism Spectrum Disorder (ASD) is found in about 1 in 54 children, they do not have all the tools, family support, or education to receive child 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 blacks and Latins are also diagnosed later due to health care bias.
All of this explains why many autistic people are not diagnosed until adulthood. Autistic adults with a delayed diagnosis often report feeling different from their peers, and many begin a search for answers to self-discovery. Adult identification is starting to focus more on the inclusion of women and non-binary individuals, as people of the opposite sex are more likely to report autistic traits and undiagnosed autism than their same-sex counterparts. The landscape of autism is changing, as is our definition of who is autistic.
For women, the diagnosis can be accompanied by unique challenges. “While women have historically been misdiagnosed, there is no ‘female presentation’ of autism,” said Tara Killen, MS, autism therapist and founder of Thriving Autistic, a nonprofit organization that supports autistic adults. Killen explains that the concept of “female presentation” comes from the idea that the intense passions of women and girls are considered socially acceptable and are regarded as high veils and high camouflage – often out of a need for personal safety and conditional social acceptance. “It’s not just women who show up like that,” adds Killen. “They are also trans men who have been socialized as women, or men or as non-binary individuals.”
The landscape of autism is changing, as is our definition of who is autistic.
Adriana White, a 37-year-old Latin American librarian with autobiography, agrees. “Gender identity is a spectrum. “Many autistic people do not fit in well with this traditional binary sex,” says White. “Personally, I was a very boyish girl who preferred sports and video games, but still I am judged by people’s expectations for girls. Most people saw me as a very shy and quiet girl and had no idea about the level of stress I had in my head. “In fact, White was misdiagnosed with bipolar disorder before being diagnosed with ASD.
Killen says that misdiagnosis is common, especially those of borderline personality disorder and bipolar disorder. Although it is possible to be autistic and have co-morbidities, he says these other diagnoses are consistently applied incorrectly to autistic adults when they reach autistic exhaustion at work or school. “Exhaustion occurs when our ability is offset by the demands of the environment,” he says. “For people with autism, it has a very different recovery path.”
Tasha Oswald, PhD, a therapist who affirms neurodiversity and founder of Open Doors Therapy, agrees, but notes that the experience of burnout may seem different to women and people with autism of the opposite sex. He says to think of this exhaustion as the accumulation of all the invalidity they have faced in life. “It’s an exhausting process,” says Dr. Oswald. “They walk with a lot of shame and have something that looks like a disaster to many of them.” For some people, says Dr. Oswald, burnout can lead people to seek out mental health services – and this can eventually lead them to learn more about autism.
How (and why) adults learn that they are autistic
For many autistic adults, self-discovery leads to a formal diagnosis – and this happens more often because of the pandemic, Killen says. In a lockdown, many adults started working from home in their own environment. “[They] “They found that they were much happier and did not have to try to do all the things and try to meet the social expectations that they normally had to meet,” says Killen. This has led some people to try to understand why this happened.
Curiosity led White, a librarian, to discover that she was autistic about five years ago. It happened because I wanted to know more about autistic students who did not fit into the mold of young, white men. “The more I read, the more confident I became that this was why I always felt so weird and so lonely for so long,” she says. When White shared her autism diagnosis with her family, it led to a moment for everyone: White’s mother suspected she might be autistic, as well as an older cousin. “My family did not know what autism was in the ’70s and’ 80s, and the professionals were not really looking for autism in Puerto Rican girls,” says White.
“Professionals were not really looking for autism in Puerto Rican girls.” – Adriana White
Dr. Oswald notes that for many autistic people who are marginalized by either sex or race, their mask is misinterpreted as shy and sensitive – to avoid being considered difficult or strange. “They try to fit in with the white, heterosexual culture,” says Oswald. “It’s another level of concealment besides gender and race. It’s so important to recognize the different levels of coverage that are happening. “
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 computer professional, writer and streamer, felt she had to learn the answer to understand her neurology. He says getting an official diagnosis was like “this very moment with a light bulb I had when I went out as a trans”. It took decades to get to this point, he says. Although her parents knew she was autistic when she was 8 years old, their stigma prevented them from telling her or seeking services to help her. “Because of this decision, I spent 30 years secretly – in bullying, without knowing who or what I was, I was in pain, I was confused, I lost,” he says.
Sweeney, who is trans, also faced the crisis from dubious professionals. “[It became] “A trend that increased in proportion to the number of my psychic visits, incidents and prescriptions, which then intensified as I made the transition and started presenting women,” she says. Before finally being diagnosed with autism, he went through many misdiagnosis and prescription treatments to, as he puts it, “understand what had already been discovered.”
“I spent 30 years covering – receiving bullying, not knowing who or what I was, I was in pain, confused, lost.” – Erin Sweeney
While most people think of self-diagnosis or formal diagnosis as a personal situation that depends on emotions and finances, circumstances differ around the world. Hazan Özturan, a 30-year-old woman living in Turkey who identifies with the nearest perpetrator, explains that where ze lives, it is almost impossible to access an official diagnosis. “There is no clear way to get a diagnosis,” says ze. “The closest thing to a diagnosis is a disability report, which may or may not be renewed when the person is an adult.” However, ze would like a formal diagnosis if possible, although ze is not sure if it is a choice in zir country.
The power of autistic pride
In a world that often focuses on the suffering faced by people with disabilities, the sense of pride that autistic people experience when they are diagnosed is life-changing. A discovery shared on the Internet may mean that it is flooded with congratulatory messages from other autistic people, in stark contrast to the pity that some neurotypists may share.
“Autistic pride changes lives in many ways,” says Dr. Oswald, noting that many of her clients feel that a burden has been lifted from their shoulders and feel that many of their fears may no longer hold them back. Sweeney feels very proud as an autistic and trans person. “From discovering and exploring myself and my determination to live ‘uncovered’, I found a ton of joy in the aspects of myself I used to cover,” he says. “I find that I enjoy talking and socializing – as long as my needs are met. That led me to start streaming my video game on Twitch and a possible new avenue of skills and support I was not aware of. “
With this sense of community and pride, people who find out they were autistic later in life feel they have a place to belong — and that is invaluable. “Knowing I’m autistic has greatly improved my mental health,” says White. Instead of feeling overwhelmed or defective, adults with autism find that their diagnosis can help them create the happiest and healthiest life that …we-I deserve.
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