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Square Pegs fills in intersection of Queer and autistic identities

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Photo courtesy of Zack Siddeek
Photo courtesy of Zack Siddeek

The LGBTQ community is one in which connections can be found based on shared experiences. It is these common experiences that unite us, that help us find solidarity with others who feel the same as we do, and reaffirm that we are not as weird and isolated as we may have once believed.

Not all Queer identities are the same, of course, and when race, class, and ability are added into the mix, our experiences can once again feel isolating, even within Queer spaces.

For members of the LGBTQ gang who also find themselves on the autistic spectrum, their intersecting identities can lead them to feel excluded from Queer spaces, due to a lack of understanding and access needs not being met.

Square Pegs support groups
Seattleite Zack Siddeek saw a need for more local organizations for those on the autistic spectrum, so he stepped in to run Square Pegs, a network of social groups for autistic adults, in 2016.

Founded in 2011, Square Pegs is a conglomeration of about 18 separate groups that meet once a month. Since its origin, the organization has broken into smaller groups, including those specifically for Queer and nonbinary autistic people and autistic women.

"The cross-pollination between the Queer community and the autistic community is quite prevalent," said Siddeek. "I would guess that at least anywhere from 25 to 45% of autistic folks are Queer."

The LGBTQ-specific subgroups of Square Pegs provide spaces for people to connect with others who might share the same experiences. "I've just heard a lot of folks in the groups I have run say that they appreciate finding those who have had the same experiences they have," added Siddeek, "whether it be trying to come to terms with both their trans and autistic identities or trying to find support from their families, only to find rejection and ostracization.

"In regards to how it helps folks, a lot have said it's been great for their mental health. It's been great for just having a community and a sense of belonging. It sort of helps them realize that they're not alone. When you're in an intersection of an intersection, you know it's so hard to find others like you."

Siddeek has taken on an important role in Square Pegs, overseeing the recruitment of new group facilitators and providing some light training and background support to group leaders. In his position, he has come to see many of the ways autistic people have to adapt to fit in with other groups, especially when they try to become more active in LGBTQ spaces. This can become very strenuous on autistic people, who are essentially forced back into the closet by hiding their disability in order to be accepted in social circles.

"Autistic folks often have to deal with what we call 'masking.' It's hiding, essentially, our autistic traits for the comfort of the non-autistic people around us. That also directly impacts how we socialize with others. It can just be exhausting. Social groups are a great way for folks to not have to put that burden on themselves."

Left out of the LGBTQ community
While the LGBTQ community is big on accepting others and proudly coming out of the closet, some Queer spaces are still exclusionary toward autistic people. "A lot of the LGBT spaces are in loud and crowded noisy bars, with lots of bright flashing lights and all of that, and all of that makes it inaccessible spaces for autistic folks out there," said Siddeek.

"A lot of people have said that they just really don't feel like they have a space in the Queer community because of that, and it has been really hard for them to find their identity and a place of belonging. So that's something that needs to be looked at."

Rick Grossman, who leads an LGBTQ Square Pegs meetup on Thursday nights, echoed Siddeek's remarks about the inaccessibility of many Queer spaces. "When I hear shouting it reminds me of anger and I want to pull away from that," he said. "And then of course in a bar, you just can't hear anyone.

"Also, whether I'm on the spectrum, or for other reasons, I just tend to be on the shy side, and the environment there is just very competitive."

Grossman has experienced a fair share of social isolation, due in part to the way the general public has been socialized to understand both sexuality and disability. "I find it very difficult to make friends," he explained. "I believe that people just don't like me. I can never really quite connect with anyone. At the least, I come off as quirky to people, and people tend to avoid that. I have some different opinions on things and different ways of approaching things, and I think people want to connect with people who are like themselves."

When it comes to putting his autism into words, Grossman explained that he often experiences what others might describe as being lost in translation. "There's some set of norms, body language, word usage, whatever, and I just don't get it," he said. "As a result, I can piss people off."

"People have very different impressions of me, who I am," he added. "I just don't get it. People are angry at me and they insist because, you know, I have two arms and two legs, that it's a willful choice or something, and I frankly have no idea, and I am constantly asking people, 'What am I doing that gives you that impression?' And either people aren't observant enough, or they're maybe trying to be kind.

"It's kind of like suddenly landing on another planet and playing a game, but you don't know what the rules are, and everyone assumes you know."

Unequal access to health care
Accessibility is the main issue when it comes to mainstream acceptance of people with LGBTQ and autistic identities. Not only in physical settings, but also when it comes to access to healthcare.

"LGBTQ autistic folks have much worse outcomes than either autistic or LGBTQ folks. It's not like 1 + 1 = 2 in this case; it's like 1 + 1 = 8 or 9 in a lot of cases, so it can be really hard for them to find really good supportive mental health services for a big variety of reasons," Siddeek said, explaining how both LGBTQ and autistic identities often lead to mental health issues, such as depression and anxiety. And when an individual holds both identities, the likelihood of struggling with mental health is multiplied.

For autistic people who aren't enrolled in the Developmental Disabilities Administration, which is about 70% of them, there are no real formal mental health supports, so most have to use local mental health systems, especially because most are on Medicaid.

The community has a suicide rate that is nine times greater than the general population, and Siddeek believes it is directly related to the fact that mental healthcare is so inaccessible and hard to find. (There's also an 80% unemployment rate among autistic people.)

Jack Duroc-Danner is another LGBTQ group leader in Square Pegs. He has struggled in the past to find healthcare providers who understand his identities. "A lot of times, therapists aren't properly trained in either LGBTQIA identities or autism," he said, "but then when you combine the two, a lot of times doctors and therapists struggle with how to deal with this population. Just trying to exist as either one in society is challenging, but when you're both it just sort of just amplifies difficulties.

"And then there's also the other identities that we have, because we all contain identities that intersect. So, you know, race, class, access to resources, all of these things also intersect with these identities."

Finding therapists and programs that can understand LGBTQ people on the autism spectrum becomes even more difficult for those who don't seek a diagnosis. "I've not been diagnosed," Grossman explained. "The process... is expensive, it is long, it requires interviews with your elementary school teachers, your parents, etc. They're all dead.

"And what do I get after that? A piece of paper that says I'm on the autistic spectrum, and what does that do? There are no special programs for adults on the autistic spectrum. The only thing in Seattle is a peer support group, and we just get together and complain and talk about our problems. There's no special therapist to help us."

Don't ask, don't tell
There are many reasons why this lack of adequate mental health access exists, but a lack of authentic dialogue around the experiences of autistic people is ultimately what it comes down to.

"I think one of the biggest barriers we face, and research has shown this, is that when autistic people are around non-autistic people it sort of puts the non-autistic people in a heightened sense of anxiety, just because of the different way we interact and socialize," said Siddeek.

"So, research has shown that [white] autistic folks face implicit bias at a level similar to what folks of color encounter, and so that impacts us everywhere, from schools to forming friendships to trying to get and hold jobs...

"I think a lot of it just comes down to the idea that difference is a bad thing, difference creates discomfort, and what autistic people are taught from our parents and our providers is that success means being indistinguishable from our peers," Siddeek said.

"We have to hide our autistic traits to have the best outcomes, but what the research is now showing us that the more energy we as autistic people spend hiding our autistic traits, the more likely we are to have suicidal ideation, depression, and anxiety. And I know there's a lot of [correlation with] the LGBTQ community there as well.

"I think it starts with not necessarily being afraid of difference, not seeing difference as creepy, and being more accepting of the different ways autistic folks might socialize with others and engage with others. I know it's easier said than done, but that's what needs to happen for my people to stop dying, essentially."

With the general public often failing to understand the experiences of the autistic community, and often pressuring them to mask their condition to assimilate, systems continue to serve neurotypical people without considering the needs of neurodivergent ones.

Autistic people of color face even more struggles. "The way our autism is seen is directly impacted by the color of our skin," Siddeek said. "Like if I'm having a meltdown in public, for instance, I probably won't have to worry about getting shot by the police, but for Black and Brown autistics, that's always on the forefront of their minds, and it just puts all the more pressure on them.

"For a lot of us, autism is an invisible disability. Autistic folks of color, similar to women, may not be particularly believed if they disclose that they're autistic, and they will have to fight much harder to get the services and support that someone like me would."

Not all autistic people are asexual
The fight to be seen and believed is common among autistic adults, especially when it comes to sexuality. "Disabled folks are much less likely to receive sex education," said Siddeek. "That can lead to very high rates of sexual assaults and boundary violations, especially for women and female-bodied folks."

The people who most often serve as gatekeepers to those services are parents and guardians, who are sometimes very uncomfortable with their differently-abled children learning about sex and sexuality. This has led to society forming expectations around differently-abled people that are just not accurate. Often those with physical or intellectual disabilities are assumed to be asexual, with neurotypical people unable to understand that adults with disabilities are still adults and still experience sexual desire.

Since innocence and asexuality are often ascribed to autistic people, it can be very hard for those who are Queer to be accepted when they try to come out. This was Duroc-Danner's experience. "I was in high school, I was a sophomore or a junior," he said. "It was one of those things where, in general, my family was accepting of LGBTQIA individuals, but at the time, what they were told by my therapist was that I was too developmentally delayed to understand the difference between friendship and sexuality and I was just confused. I didn't understand why they wouldn't believe me when I said how I identified, but what I realize [now] is [that] it was because this was the early 2000s, [when] Lesbians were, for lack of a better word, popular. My therapists and parents thought I was just copying what I saw in People magazine.

"On one hand, they were accepting of these identities, but on the other hand, they didn't think I could be LGBTQIA, because they didn't think I could ascertain the difference between friendship and sexuality."

While Duroc-Danner's family eventually came around and accepted him for all his identities now, this is not always the case for others.

"I had no friends as a child. I couldn't relate to people and they couldn't relate to me," Grossman remembered. "It wasn't until junior high school that I had a friend. We sat next to each other in science class. I don't know how we became friends, but we just did. We did everything together through high school. In high school, I officially came out, and I guess the pendulum swung a little too far, and maybe I talked about being Gay too much, but he just said he couldn't see me anymore."

While Grossman's story is from the '70s, it still reflects many of the experiences felt by autistic LGBTQ people today.

Fighting shame tactics
Grossman grew up at a time when families were ashamed to have a disabled child or an LGBTQ child. The stigma around a diagnosis is what led Grossman's parents to never seek one for him.

"My parents had expectations of what I was going to do to fulfill their dreams, and that never really worked. I wasn't the kind of student my mother expected of me. I was pretty much considered a failure by the family," he said.

When he came out as Gay, he recognized that the path his parents expected him to follow was not for him. Today he still struggles to see himself outside of the failed expectations of his parents.

Siddeek had a similar experience when it came to hesitation from his parents, although they eventually did receive a diagnosis for him. "My pediatricians flagged me for potentially being autistic when I was two, and my parents didn't pursue a diagnosis until I was ten or eleven," he said. "It's a very common story, and right now a lot of parents want their kids to lose their diagnosis or lose their autism. That's what a lot of them see as success, and a lot of providers have bought into that as well.

"From what I've seen, we can't stop being autistic; we can just repress our symptoms, and that leads to really bad outcomes as well, ten or fifteen years later."

The rejection that early stigmatization from family members creates can be very detrimental to young people trying to form an identity. "I think the autistic community and the Queer community are the only ones where we don't share the same identities as our parents," said Siddeek.

Acceptance and representation
What the autistic community needs, like all marginalized communities, is acceptance. For the LGBTQ community, greater acceptance came about through media and conversations, once people collectively decided to stop hiding and assimilating, LGBTQ people were able to find spaces and communities where they could be celebrated. With time the general public grew to understand more about these identities, usually gaining education through media representation.

However, when it comes to the autistic community, this tactic has not been quite as successful. "Historically, the education has not been happening from autistic people ourselves," Siddeek said.

Organizations like Autism Speaks, which have done more harm than good for autistic people, are often led by neurotypical "allies" and parents, who give the impression that autistic people are incapable of speaking for themselves.

Hearing directly from autistic people is the best way to get authentic representation. Siddeek encourages people to find creators on TikTok and YouTube who talk about their own experiences. These sources are much more accurate and organic.

When the media does attempt to feature stories about autistic people, they need to collaborate with actual autistic people when coming up with their stories, plots, and characters. Representations such as Sia's film Music tend to perpetuate stereotypes and caricatures of autistic people, leading to further misinformation among the general public.

"When you look at the media, even today, the number of characters who are queer and neurodiverse are vanishingly rare, and when you add in queer, neurodiverse, and not white, then it becomes practically nonexistent," Duroc-Danner added. "There is a problem, in movies and TV, with a lack of diversity behind the camera. It's still very hard to find accurate representation of queer and neurodiverse [people] in media, and actually, I see it showing up more in children's media, like with She-Ra."

Still, Duroc-Danner has hope that we are entering into a new world when it comes to a greater understanding of disability. "There's going to be a cultural shift in attitudes around disability," he said, "in large part due to COVID and how so many people are going to need some sort of long-term support, whether it's due to long- term COVID syndrome or having to deal with the trauma of seeing loved ones die of COVID. Regardless of what it is, there are going to be a lot more people who will either be disabled or need some kind of assistance, and because of that, it will shift our cultural conversation."

A shift in acceptance may also help a younger generation of parents seek a diagnosis without internalized bias or stigmatization.

The first step to seeing these changes is to just start talking about them. All communities can do better in becoming more accessible to people with autism. The conversation can begin with you. How are your social circles accepting of people with different abilities? What stereotypes do you still carry?