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  • Writer's pictureVeronika Bajnoková

No One Listens to You: How Medical Research Has Failed Autistic Queers

Updated: Jun 24

“At the end of the session, he just said ‘You were looking me in the eyes, so I don’t think you have autism.’ It was such a hard hit for me.”

Dorothy has spent an entire session looking at her doctor’s eyebrows, advocating for herself to be referred to a psychiatrist who would be able to help her navigate her new life in the Netherlands as an autistic person. “Why wouldn’t I try to make eye contact when I’m in a high-stakes situation trying to get my point across? And he just dismissed me like that.”

Dorothy O’Brien was diagnosed with autism in adulthood and now she’s learning to understand the symptoms through work on her camper van. Ⓒ Veronika Bajnoková

Dorothy O’Brien was officially diagnosed with autism in Slovakia a year and a half ago when she was 24. Ever since she moved to the Netherlands with her boyfriend last summer, she’s been relentlessly trying to convince Dutch medical professionals that her autism diagnosis is valid and needs therapy guidance. So far, without any luck. “There is a long waiting list for therapy, and I am not even on any of the waiting lists.”

Bias in the female to male with ASD ratio Ⓒ Veronika Bajnoková

Just like Dorothy, most autistic women and queer people remain undiagnosed into their adulthood. Because traditional research used to see autism as solely male diagnosis, the understanding of autism symptoms and the tests for diagnosis which are still used are tailored to the male perspective. 

While it was previously believed that only one in five autistic people are women, most recent research suggests that there might be as many autistic women as men. However, these statistics still fail to represent queer individuals like Dorothy, that do not fall within the gender binary.

Misdiagnosed at 16

She was first diagnosed with depression and anxiety when she was 16. But when she saw people speak up about autism on social media, she started doubting this diagnosis, as she felt her symptoms did not match the official diagnosis. “I did my own research into it, I wrote a ninety-page document about why I thought I was autistic, and I brought that to my psychiatrists. That’s definitely not a sign of my autism,” she laughs. 

“The psychiatrist said that in her opinion, I don’t look autistic,” Dorothy remembers the response she was met with after the official test results confirmed she was autistic. “There is a very strong image of what autism is in most people’s heads. And it is a young boy who plays with trains. I am none of those things.”

“There is a very strong image of what autism is in most people’s heads. And it is a young boy who plays with trains. I am none of those things."

Most women and queer people who were assigned female at birth never get diagnosed with autism because they develop strong skills in camouflaging the symptoms, also known as masking, and train themselves to adapt in various situations. Hiding one’s personality might cause children to become more shy and introverted, which used to be seen as a typical feminine trait. 

“There’s also a difference in what an autistic adult looks like, to what an autistic child looks like,” Dorothy says recognising autism in adults is more difficult because most acknowledged symptoms are usually observed in childhood. “I was so done. I spent half a year trying to contact doctors and get someone to listen to me. It was very heartbreaking, but also not unexpected.”

Dorothy is working on the van together with her boyfriend Braňo: “I'm now learning the skills that I lost with his help while unmasked, and I'm learning to enjoy it again.” Ⓒ Veronika Bajnoková

All you need to do is be a good zebra

Even though the psychiatrist did not agree with the test results, Dorothy received her autism diagnosis on paper. “When I was diagnosed with depression, my brain kind of saw it as something I should fight,” Dorothy says the diagnosis changed her perspective on the way she was struggling. “There is this quote I saw: ‘If you're raised with horses, but you're a zebra, you will never be a good horse, but you can be a good zebra.’”

The diagnosis helped her make sense of her symptoms and listen to her body. For instance, she always struggled with eating textured food: “Tomatoes - I hate when they burst in my mouth. Watermelon - the crunch and sponginess of it? No.” But she also experiences hyperfixations: “Some things just tickle your brain in the correct way. I can listen to the same song twelve times in a row.”

“If you're raised with horses, but you're a zebra, you will never be a good horse, but you can be a good zebra.”

But coming to terms with the diagnosis also means unmasking, Dorothy explains. “You learn certain tasks while masking but then you lose the ability to do those tasks,” she says she used to do a lot of handiwork as a child. But when she started building a living van with her boyfriend, she suddenly couldn’t figure out how to get the physical work done. “The memories of doing it are there but they’re kind of fuzzy. It’s like there’s no connection between the memory and the physical skill.”

Dorothy explains how she experienced the process of unmasking through the handiwork on camper van. Ⓒ Veronika Bajnoková

Autism, transness, and transhumanism

Valentine* has a similar experience with the process of unmasking, as she lost the ability to perform up to the productivity standards imposed by her surroundings: “I stopped forcing myself to perform academically as rigidly as before.” She self-diagnosed around two years ago and since then has taken university studies at her own pace. “I was always the overachiever. So a kid who always got good grades was never perceived as autistic.” 

A 2020 study of over 500,000 adults found that 24% of transgender respondents had been diagnosed as being on the autistic spectrum.Ⓒ Veronika Bajnoková

Recognising that she is autistic coincided with coming out as trans. “I see neurodivergence very much connected to queerness,” she explains. “Both have to do with deviance.” Recent research suggests that a higher percentage of autistic people identify as queer than the general population, as autistic people rely less on social norms, thus, are more open about their sexual orientation or gender identity.

“When I played Cyberpunk 2077, I locked myself in my room for an entire week. It penetrated every facet of my life for a while,” Valentine explains how she got absorbed by a videogame in which human lives are transformed by cybernetics, exploring the boundary between a human and a machine. “I liked the prospect of transcending what we often think are unmalleable and unquestionable boundaries of what it is to be human.”

The idea of transhumanism was appealing to Valentine also because of her own transness. However, the intersection of her autism with queerness is the reason why she never sought an official diagnosis. “I am glad that I never got a formalized diagnosis for autism, because I just don’t see any benefits to it,” she argues.

Valentine playing Cyberpunk 2077: “I structured my whole life around it - I started listening to music and reading literature that made me feel transhuman.” Ⓒ Veronika Bajnoková

Diagnosis can be a blessing and a burden

When Valentine first realized she might be autistic, she took standardized tests online and brought the results to her therapist. “They weren’t very receptive, even though the results indicated a significant chance that I would be diagnosed with autism,” she argues. “And all they said was ‘Yeah, maybe you have autism, maybe you don’t.”

After that, she never brought it up with her therapist again. “Queerness has always been pathologized by psychoanalysis,” Valentine says that official autism diagnosis could be an obstacle to receiving proper queer healthcare. “For people diagnosed with mental illnesses or neurological disorders, accessing gender-affirming healthcare is way harder.”

“I am glad that I never got a formalized diagnosis for autism, because I just don’t see any benefits to it.”

A study conducted last year was the first one to ever document the hardships of autistic queers trying to access gender identity healthcare. For many transgender and non-binary people, it is not uncommon to be told that those diagnosed as autistic are unable to know their own gender identity. 

Dorothy’s autism also intersects with her queerness, she says: “I don’t comprehend social structures and cues. The idea of man and woman is just very foreign.” But she still wants to have children in the future, which presents different complications for her than for Valentine. “The therapist here in the Netherlands implied I shouldn’t have children because autism is hereditary.”

“The therapist here in the Netherlands implied I shouldn’t have children because autism is hereditary.”

This was the very opposite of what Dorothy wanted to hear. “I don’t think I’m going to get anywhere with this guy,” she sighs with disappointment. But if she wants to get a doctor who can help her navigate through life with autism, she needs to get a recommendation from this therapist first. “Maybe I will figure out in my therapy journey that I am not meant to be a parent. But I won't know unless I try. It's important for me to at least try.”

*Name Valentine is a pseudonym. The interviewee requested anonymity on the account of personal security as hate crimes against transgender people are on the rise.

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