How doctors’ offices and queer culture are failing autistic LGBTQ people.

How Doctors’ Offices—and Queer Culture—Are Failing Autistic LGBTQ People

How Doctors’ Offices—and Queer Culture—Are Failing Autistic LGBTQ People

Outward
Expanding the LGBTQ Conversation
Feb. 6 2017 8:45 AM

How Doctors’ Offices—and Queer Culture—Are Failing Autistic LGBTQ People

Young man visits doctors office suffering with depression
Autistic people often have to "come out" to their physicians.

AlexRaths/Thinkstock

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Every patient presents their medical provider with a unique set of needs.

Even straightforward complaints or concerns can take on added complexity, depending on a person’s circumstances. Checking for an ear infection is simple on the surface, but when the ear in question belongs to an autistic child, measures to make that encounter as reassuring and comfortable as possible often require more attention. Creating a safe environment for gender or sexual minority patients to disclose information they may feel afraid to share anywhere else is essential for any provider who hopes to deliver good care to them.

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Autism, a diagnosis that can manifest in a variety of different ways, falls along a spectrum. Autistic people may process sensory experiences differently, have challenges with social interaction, or move in atypical ways, among other common characteristics. Some of these characteristics may be more noticeable in one autistic person and less in another, or pose more difficulties in different settings from one autistic person to the next. Meeting the needs of patients who are both LGBTQ and autistic may require an even greater level of awareness and attention. Unfortunately, that awareness and attention is often lacking.

As a physician, it’s never comfortable to stumble across an area where you don’t know as much as you should. For me, such a realization came not long ago when I spoke with a young gay male patient who was also autistic. As we talked, it occurred to me to ask how being autistic affected his ability to meet potential partners, and whether he found it challenging to interact with non-autistic (or neurotypical) gay men. That people who are both autistic and LGBTQ might face unique challenges in a majority straight, neurotypical world simply hadn’t dawned on me before then.

It turns out those challenges can begin long before adulthood. Autistic adolescents often lack information their nonautistic peers receive as a matter of course, particularly if they are LGBTQ.

“Autistic people, and people with other developmental disabilities, often do not have access to even basic sex ed in school, particularly if they are being served through the special education system,” said Julia Bascom, executive director of the Autistic Self Advocacy Network. “Behavior that is considered gender-nonconforming can be targeted for behavioral modification or perceived as a social skills deficit in need of correcting. Most social skill curriculums and support groups for autistic adolescents and adults presume all participants will be cisgender and heterosexual.”

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These concerns were echoed by Steve Silberman, author of NeuroTribes, a best-selling account of the history of autism and the growing neurodiversity movement.

“There’s a pernicious misconception that people with intellectual disability are incapable of feeling sexual attraction,” Silberman told me. “The mother of an autistic teenager I know, who is quite evidently trans, said that she wouldn’t even consider giving her teenager sex education, because they have ‘the mental age of a child.’ This is a very dangerous way to think, because that teen could end up in jail if they're not taught about the limits of appropriate sexual behavior. A teenager is a teenager, no matter what their diagnosis is.”

That special education programs wouldn’t include sex education curricula is one of those things that, sadly, doesn’t surprise me. (The problems that could stem from that lack don’t just apply to LGBTQ autistic teenagers, of course, and I’ll know to ask if all my patients on the autism spectrum are receiving comprehensive education going forward.) Unfortunately, even assuming autistic adolescents have access to the same sex education their neurotypical peers receive, it’s far too likely it will fail to include LGBTQ people.

However, it’s not merely the educational system that fails to recognize autistic people’s ability to understand themselves, or doesn’t recognize them as people with their own fully developed understanding of their gender and sexuality. When I talked with autistic people who were gender or sexual minorities, they expressed a strong desire to be heard and respected by medical providers as both autistic and LGBTQ.

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“A common misconception is the assumption that gender and sexuality are irrelevant to autistic people, or that our sexuality and gender identities are symptoms of our autism,” said Bascom. “These beliefs are not only inaccurate but also profoundly harmful to autistic people and are often used to prevent autistic LGBT folks from accessing LGBT spaces, authentic relationships, and transition-related health care. The reality is that autistic people can have a beautiful diversity of gender identities and sexualities, and we have the same right to self-determination as anybody else.”

For patients who are both autistic and LGBTQ, finding medical providers who are respectful of all aspects of their identity is important. Unfortunately, finding such providers can be challenging.

“Yes, there are some who understand that my medical and mental health needs directly correlate to my gender and sexual identity, but it is not an easy thing to find,” said Rox Herrington, an autistic trans man. “It took me years to find doctors who understood how to relate to me, and there are still many times where I mention that I’m autistic and that I’m transgender that I will be immediately shut down.”

“As a genderqueer, nonbinary trans person, I've found that it is possible to find health care providers who are very competent with transgender/gender-nonconforming people, but they are highly unlikely to also be competent in working with autistic people in a non-pathologizing way,” said Lydia X.Z. Brown, chair of the Massachusetts Developmental Disabilities Council. “Likewise, most health care providers I might feel comfortable sharing about being autistic with, and who would be more likely to be more respectful and non-ableist, seem not to have much experience working alongside [transgender/gender-nonconforming] people.”

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I am sorry to admit this pervasive ableism has too often informed the way I’ve interacted with autistic patients, LGBTQ or otherwise. Regardless of their gender or sexual identity, autistic and other disabled patients have every right to have those identities acknowledged by their medical providers. Everyone who delivers care to autistic patients should be sure they’re aware of the full person in front of them, not a preconceived notion of what they may or may not understand about themselves.

It was also dismaying to see how many people told me they don’t tell medical providers they are autistic because they fear being patronized or dismissed. Just as LGBTQ people should feel no inhibition from sharing information about themselves with their physicians, people with any kind of disability should be able to walk into a doctor’s office and feel confident they’re going to receive care that is respectful and meets their needs. Clearly the medical community has work to do when it comes to how we care for our autistic patients.

However, it’s not only medical providers who fail to make autistic people fully welcome and at ease. Many told me they don’t feel that the LGBTQ community creates space for them, either.

“There’s a long history of blatant ableism among gay men, unfortunately,” said Silberman, who is gay but not autistic. “Certain aspects of the gay male urban subculture are so caught up in looking young and fabulous, working out a lot, and coming across as sexy and supercompetent, disabled folks have to struggle for visibility and respect.”

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Events that cater to mainstream gay audiences are often inhospitable to autistic people. “When I go to LGBT events, I am still berated by people using the r-slur freely,” I was told by Emmanuel, an autistic, trans gay man. “Many LGBT events are not accessible to autistic people. LGBT events are often crowded, have live and/or very loud music, food stands, and clubs often have bright flashing lights, all of which are sensory inputs that the vast majority of autistic people are hypersensitive to. There is often no ‘quiet zone’ for us to retreat to when we experience sensory overload.”

“I wish more neurotypical LGBTQ people understood that when you make all spaces party or cruising spaces, or don’t create spaces that are more geared toward calm and quiet discussion, without any spaces for respite, you exclude many autistics,” echoed Herrington.

“I’ve never really felt like I belonged in the general LGBTQ community,” I was told by an autistic lesbian, who requested that I not use her name. “I feel very supported as a lesbian in the autistic community because, among the autistic people I know, a lot are queer women.” She continued, “I feel like even disabled straight people can relate to some aspects of being queer because disabled sexuality is so often erased or treated as perverse.”

Many people I heard from expressed similar sentiments of feeling more accepted as an LGBTQ person among fellow autistic people than vice versa. One of the first things I saw when I visited the Autistic Self Advocacy Network website was a statement supporting the needs of trans autistic people. If LGBTQ communities are going to be welcoming to autistic members, making an effort to hear from them directly about what they need is a necessary step.

Autistic people and LGBTQ people have a history of being marginalized, and of being subjected to treatments meant to make them conform to an expected idea of what is normal. Medical providers are obligated to recognize the real needs of all their patients, regardless of their sexuality, gender identity, or neurology. For autistic LGTBQ people, the obligation is all the more pressing.

But the obligation extends further than that. It’s not just physicians who owe autistic people consideration and respect. It’s everyone, particularly those of us who are gay, lesbian, bi, or trans and know all too well what it feels like to be excluded.

After all, in the words of an email I received from Luke Aylward, a gay autistic man from Leeds, England, “I’m immensely proud of being autistic and don’t see why anyone should be ashamed of disclosing it. Anyone who has a problem with being autistic isn’t really worth your time.”

Daniel Summers is a pediatrician in New England. He writes about medicine and LGBTQ issues.