Two parts of Sarah Heuser’s identity started to click into place when she was 16. Her autism diagnosis came two years later, after she watched an episode of “Boston Legal” and identified with a character on the autism spectrum.
She came to terms with the second part — that she was attracted to women — at 22.
“Autism for me was a lot easier to grasp and to accept than the gay thing was,” Heuser said.
Nationwide, one in 68 children are diagnosed with autism, according to the Centers for Disease Control and Prevention. In Utah, it’s greater, with one in 54 children being diagnosed.
And while 4.5 percent of Americans identified as part of the LGBTQ community in 2017, according to a Gallup Daily tracking survey, research and those in the autism community report much higher rates of people who have autism who also are LGBTQ than in the neurotypical population.
Research on the intersection is fairly scant and leans heavily on the transgender side of the LGBTQ spectrums. A study published in 2010 found that 7.8 percent of a sampling of children who had gender identity disorders had autism spectrum disorder.
Possible explanations are little more than correlation and speculation. The increased rates could have to do with people with autism caring less about what society thinks of them and therefore they are more likely to come out as LGBTQ. Another proposes that people with autism might form a fixation on gender, or that the formation of gender identity depends on cognitive, communication and social skills, which can be impaired in people with autism.
As awareness for autism increases, and more Americans come out as members of the LGBTQ community, the topic is gaining more attention and spurring discussions on the intersection of the two identities.
Jane Carlson, the director of the Melisa Nellesen Center for Autism at Utah Valley University, has seen more people with autism coming out as LGBTQ over the past five years as acceptance has increased.
“The assumption used to be that many, many people on the spectrum were asexual, that they didn’t identify as sexual beings,” Carlson said. “We thought it was related to their social deficits and they didn’t want to be in relationships and that just wasn’t a thing for people with autism, and now we know it is really related to difficulty navigating the situation.”
Carlson said the assumption is that people with disabilities aren’t going to develop and express their sexuality. Children who have an Individualized Education Program for special education aren’t getting sex ed in schools, and parents of children with disabilities often don’t talk to their children about it.
“The last thing they are thinking about is their children as sexual beings,” Carlson said. “They really are in the day-to-day and that is scary to think about.”
Laurie Bowen, the associate director of community outreach at the center, runs the Passages program at the school, a program for college students with autism. During interviews every year, she heard students talk about figuring out their sexuality.
She said a lack of sexual education can cause problems, especially when parents have bad reactions to their children coming out.
“Sometimes people might hear the LGBT and turn that off, like, ‘oh, we don’t have to deal with it,’ but you do have to deal with sex, regardless of how that is coming out,” Bowen said.
Dorothy Simister, a social worker at the center, said safety is a factor in whether people disclose they are LGBTQ. That can be difficult due to Utah’s conservative, religious culture, and there’s additional worries about depression and suicide, especially in two communities that already have high rates of both.
One 2014 study found that in a group of 372 adults diagnosed with Asperger’s syndrome, a form of high-functioning autism that’s no longer a diagnosis, 66 percent had reported suicidal ideation, 31 percent reported depression and 35 percent had plans or attempts at suicide.
Other studies report people with autism at seven to 28 times more likely to die by suicide than their neurotypical peers.
The LGBTQ community also experiences high rates of depression and suicide. A 2015 CDC study found that 29 percent of gay, lesbian and bisexual youth had attempted suicide at least once in a previous year, compared to 6 percent for heterosexual youth.
Simister said she has noticed that women with autism in particular are more likely to be gay compared to their neurotypical peers or men with autism.
She suggests parents talk to their children about the intersection of the two identities.
“Start with believing them,” Simister said.
The Melisa Nellesen Center for Autism has striven to become a safe space for people who have autism and are LGBTQ.
“This building tends to be quieter,” Simister said. “It tends to factor in those sensory needs.”
Resources and organizations that target the intersection of the two communities are practically nonexistent, although the center is talking about becoming more intentional about addressing the overlap. Carlson said organizations that serve the autism or LGBTQ communities can create practices for the other group intentionally, instead of as an afterthought.
Andy Sebastian’s 2013 diagnosis was the first step in realizing he was a transgender man. He was in his early 30s at the time, found a chart online about Asperger’s syndrome and realized it described him.
“It was like my entire life had context suddenly,” Sebastian said. “This explains the way I am with people. This explains my social difficulty, the way I research.”
It took a few more years for Sebastian to realize he was transgender, although he started suspecting it in 2001, when there wasn’t much media or many visible role models for the transgender community.
Sebastian suppressed it, and then began cosplaying. Validation came with people thinking he was male when he was in costume.
“I felt comfortable in public in a way I never had,” Sebastian said. “My sensory problems and my social problems were diminished greatly.”
Sebastian’s autism brings about sensory sensitivities to things like lights, sounds and tactile things like tags and sequins touching his skin. Some of that has minimized after transitioning, and Sebastian has learned to recognize the onset of sensory overload and remove himself from situations.
He found a group for transgender adults, but getting in required making phone call, which is stressful for him. He also had to do an interview before getting into the group.
“It was alienating for me and I never went,” Sebastian said.
He later found a retreat for transmasculine people.
“It was scary at first, but as soon as I was in the environment I realized this is what it feels like almost to being neurotypical,” Sebastian said.
For Sebastian, the two identities are intertwined.
“Being trans and being autistic are so symbiotic to me, they are tied to each other,” Sebastian said. “I have a hard time separating what’s being caused by what sometimes.”
Navigating two worlds
Kay Mildenhall had gotten the hang of the social rules of the straight, cisgender community as a teenager. And then came realizations about sexual identity, gender identity and a whole new set of rules.
“There were things to learn and mistakes to make,” Mildenhall said, who uses they/them pronouns.
On one date, a lack of familiarity with lesbian culture, and specifically a disinterest in the band Tegan and Sara, ended up being a major turn off for Mildenhall’s date.
When Mildenhall was at Brigham Young University, they were afraid of coming off too strong to people and didn’t get the hint whenever someone was flirting with them.
When navigating the worlds of autism and the LGBTQ community, Mildenhall has been asked how they know they’re LGBTQ because they have autism.
“Autistic people do know how they feel,” Mildenhall said. “The problem is feeling too much and not knowing how to communicate it.”
An unofficial group for LGBTQ students at BYU was quiet and comfortable for Mildenhall, although things would get overwhelming when meetings got loud, like during a movie.
“I usually hear way too much at once,” Mildenhall said.
Most LGBTQ spaces tend to be loud. Mildenhall has been to Pride, but most autistic people they know back out.
They’ve also seen exclusion in the LGBTQ community of those who have autism and don’t fit behavioral norms. They want groups to use a diverse set of communication tools and wording to be attractive to everyone.
“What a person can do to help inclusion of LGBTQ autistic people is to understand that not everyone who is LGBTQ has to be extroverted,” Mildenhall said. “I know a lot of austic LGBTQ people who aren’t.”
Finding a fit
Heuser’s girlfriend told her on her second date not to touch her. Heuser hadn’t tried, and actually didn’t want to be touched, either, only she never would have brought it up on her own.
“I don’t really like to touch people until I know them very well,” Heuser said. “She is the same way.”
Heuser, a benefits specialist at ScenicView Academy in Provo, a nonprofit school for people with autism, first ventured into the LGBTQ community as an overly-invested ally angry about The Church of Jesus Christ of Latter-day Saint’s stances on the LGBTQ community.
She developed a phobia to people whispering, which meant every time someone leaned over to whisper during church services was torture for her.
“It’s worse to me than nails on a chalkboard,” she said.
She stopped going to church, and then began coming to terms with her sexuality identity. She started trying to date girls and went online, where she put in her bio that she has autism and was able to find other gay women.
Four years into their relationship, Heuser and her girlfriend fit. Neither can stand what they call “mouth sounds,” like someone playing with their tongue or eating, so they sit far apart when they eat. A lot of the things Heuser navigates with her autism her girlfriend has brought up.
Work is usually enough social activity for Heuser for a day, and staying over at her girlfriend’s place was tough at first.
“I can’t sleep in new places, so the first three times I slept at her house, I didn’t sleep all night,” she said.
She’s never been to Pride Month events, and she disliked a gay bar the one time she went to one.
“That was super loud and there’s tons of people, and drunk people aren’t sensory-friendly people,” Heuser said. “They’re loud, they’re smelly and they want to touch you, which is the worst thing in the world.”
It makes it difficult for Heuser to find LGBTQ spaces that are also autism-friendly, since many LGBTQ spaces and events are loud, packed with people and involve alcohol.
She’s faced people who are resistant to accept her LGBTQ identity due to her autism. Growing up, people would claim she wasn’t gay, but admired females or had a special friendship with them. She accepted that, until she thought about how she’d panic at the idea of marrying a man, and then realized she didn’t have to marry—or even date—men.
She was able to find out more on the internet, where she could read without worrying about breaking social rules.
“All of the social rules that were demonstrated for me were heterosexual,” Heuser said. “I didn’t get any of the social rules on how to be a part of the queer community.”
When she brings up that she’s gay, people say she knows she’s gay because she’s intelligent, but for people with autism who need greater levels of support, they wouldn’t know what they feel.
“I don’t think you have to be incredibly academically intelligent or anything like that to know feelings,” Heuser said.
She warns against trying to talk people with autism out of their own identities, since people with autism tend to see things as cut and dry.
“As much as you may think it’s shameful for them to be something, on a psychological level, it’s much more harmful to try to beat it out or talk it out of someone or scare or shame it out, which is what people tend to do,” Heuser said.