LGBTQ+, Autism, discrimination, and lack of health care

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Individuals with disabilities or who identify as LGBTQ+ often encounter difficulties in navigating the American health care system. A new study from the University of Kansas has found that people with autism spectrum disorder who identify as LGBTQ+ have greater health disparities than their peers, including being denied service or being told by doctors they couldn’t be transgender because autism would prevent them from understanding their own sexuality.

The study also found these individuals had higher rates of mental illness, smoking and poorer overall health, despite having higher educational attainment than their peers. That finding counters a large body of research showing higher education normally correlates with better health outcomes. Overall, the findings indicate medical professionals and policymakers have much work to do in recognizing and addressing the health care needs of individuals with autism, those from gender and sexual minorities and the intersectionality of these identities.

For the study, researchers analyzed data from the National Survey on Health and Disability (NSHD), developed at KU. The data revealed a high rate of self-reported LGBTQ+ identities among individuals with autism spectrum disorder. The majority of previous research on those with autism who also identify as gender/sexual minorities has focused on youth and/or were conducted in Europe. KU researchers supplemented survey data by conducting interviews to learn more about participant experiences in the American health care system. The results showed adults with autism who are LGBTQ+ experienced worse health and health care access barriers than straight, cisgender respondents with autism.

“What we found in interviews with individuals was they had this identity of having a disability and being LGBTQ, but often those two weren’t viewed as compatible with each other,” said Jean Hall, one of the study authors. “Both identities are misunderstood and underserved.”

The study was written by Hall, director of the Institute for Health & Disability Policy Studies in KU’s Life Span Institute; Katie Batza, associate professor of women, gender & sexuality studies at KU; Carl Streed Jr. of Boston University; Brian Boyd, director of Juniper Gardens Children’s Project in KU’s Life Span Institute; and Noelle Kurth, research associate at the Institute for Health & Disability Policy Study. It was published in the Journal of Autism and Developmental Disorders.

Among the findings, respondents were more than twice as likely to self-report a mental illness or psychiatric condition and twice as many poor physical health days per month than straight, cisgender respondents with autism. The former’s smoking rates were almost 10 times higher than the latter as well. While nearly all respondents had health insurance, those who were LGBTQ+ reported much higher rates of unmet health care needs. Notably, 35.7% of LGBTQ+ adults with autism reported being denied services. All of these disparities are indicative of structural discrimination within society at large as well as within the medical field.

Interviews indicated individuals were reluctant to seek health care because of previous negative experiences and attitudes of health care providers. That stigma can lead to lack of treatment, which can manifest in numerous health problems, and respondents also had higher rates of post-traumatic stress disorder than their peers.The study was written by Hall, director of the Institute for Health & Disability Policy Studies in KU’s Life Span Institute; Katie Batza, associate professor of women, gender & sexuality studies at KU; Carl Streed Jr. of Boston University; Brian Boyd, director of Juniper Gardens Children’s Project in KU’s Life Span Institute; and Noelle Kurth, research associate at the Institute for Health & Disability Policy Study. It was published in the Journal of Autism and Developmental Disorders.

“When going to their providers, they would often have to choose ‘I’m not going to tell them I’m autistic’ or ‘I’m not going to tell them I’m LGBTQ+,” Kurth said. “They knew what they were doing. They’ve had to negotiate the health care system for years and had a lot of negative experiences.”

Several respondents reported continuing to see pediatricians into adulthood due to difficulty finding other providers willing to work with adults with autism spectrum disorder. The study also found that LGBTQ+ individuals with autism were more likely to have private insurance, while straight, cisgender respondents with autism were more likely to have public insurance such as Medicare or Medicaid. The findings suggested private insurance less adequately covered the needs of the study group.

“That could be because providers who accept public insurance see more people with disabilities, but we want to look at that further in future research,” Hall said.

Above all, the study found that individuals with autism who are LGBTQ+ have higher unmet health care needs, which often result in numerous negative outcomes. That indicates that providers and policymakers alike are in need of greater understanding of both populations. Providers especially could benefit from better preparation, either in medical school or in continuing education, on how to serve people with disabilities and/or who are gender and sexual minorities. Study authors noted data from the National Survey on Health and Disability are publicly available, and they plan to share their findings with medical professionals as well.

Being both, I agree that healthcare is a big issue. It's next to impossible to keep a primary care doctor for any length of time, between communication problems and prejudice. I've been through so many doctors, and I don't even have many health concerns - just mainly need check-ups and my sleeping med - but something always seems to go wrong. When I was younger I used to lie about my sexuality but still had the communication problems, then I got to the point where I was tired of lying, and noticed after I came out as lesbian that I got treated much worse. I would never want to tell a healthcare provider that I am on the spectrum too! I just "fake normal" as hard as I can to get by for a visit or two until things invariably go wrong - and take less medication than I'm prescribed in order to stockpile it until I can find a new doctor. I do everything I can to stay in good health so I don't have to go very often, and am very lucky that I haven't had any major health problems yet.

I'll never forget the time I found a weird lump in my lower abdomen, in my late 30's. I was terrified that it was cancer, and went to a new doctor (hadn't been to one in many years after some bad experiences). She gave me the usual inquisition about birth control and sexual activity - I tried to be evasive but was so nervous that she knew I was lying and kept grilling me until I admitted my partner was a woman. Then she became so angry and disgusted, and told me I should never say that, and refused to even examine me. I was too terrified to even try to go to another doctor for a year, and went into a severe depression. The lump kept getting bigger but I felt like I would rather just die than experience that kind of contempt again. Finally I found the courage to try going to new doctors and eventually learned that the lump was just a benign fibroid. (One gynecologist I saw treated me even worse than that first doctor, but by then I had been so depressed for so long that I was numb emotionally.) If that lump had been cancer, I would be dead.