Well, I didn’t intend to start with such a heavy topic when I haven’t really established a history of writing about autism yet, but I’ve wanted to write this ever since I wrote a research paper on autistic healthcare issues and access last year, so somehow here we are :P.
A couple quick statistics to lay the groundwork here: according to the CDC, 2.78% of children are diagnosed as autistic in the US (2023). However, the number of people who are actually autistic is almost definitely larger than this due to some individuals not being diagnosed until adulthood, the inaccessibility of a formal diagnosis to many people due to the diagnostic bias towards white boys at the expense of other demographics, and the financial barriers to obtaining one under the US healthcare system. So, we’re not as small a population as people might think. And…we autistics die, on average, 17 years sooner than non-autistics (Mason et al., 2021). Why is that?
Greater prevalence of various health issues
For starters, we’re more likely to have a whole collection of various physical and mental health issues. 36.74% of over 7,000 autistic respondents in a community survey self-reported having PTSD (Bonnello, 2022), compared to a lifetime prevalence of only 6.8% of the general population (National Institute of Mental Health, 2017). We’re more likely to have anxiety and depression (Lewis et al., 2021).
Physically, autistics have an increased risk for obesity, hypertension, high cholesterol, diabetes, thyroid disease, autoimmune disorders, gastrointestinal issues, sleep disorders, and epilepsy (Lewis et al., 2021), as well as cardiovascular disease and neurologic diseases (Mason et al., 2021). We’re also more likely to have Ehlers-Danlos Syndrome, with 8.3% of autistic survey participants reporting having EDS (Bonello, 2022), compared to a combined diagnostic rate of 0.2 percent for EDS and Joint Hypermobility Syndrome in the general population in a UK study (Demmler et al., 2019).
Some of these, like EDS, are probably genetic / naturally occuring (if I understand them right – not an expert on all these issues, obviously). Others, like PTSD, are more often a result of how society treats us.
Lack of access to healthcare
Despite all those issues, we’re more likely to face barriers when it comes to accessing care. Phone calls are a known struggle for many autists, yet some providers may only offer phone communication as a reliable means for scheduling and contact. Sensory aspects of care environments may be much more difficult for autistic patients to deal with.
The communication expected from patients by providers may also be a barrier. Auditory processing delays or the stress associated with maintaining one’s role in the social situation may impair a patient’s ability to understand and recall information and instructions provided to them verbally, or to think of what questions they need answered until after the appointment has ended. The time limitations of appointment slots may not allow providers to adequately answer a patient’s questions if they require a more detailed explanation than other patients of what to expect for or from something. Or if a provider goes off on a different social script than the one the patient prepared for, the patient may struggle to interject with the thing they wanted to talk about. Poor interception (processing of the sensory input from within your own body, such as thirst and pain and needing to pee) may make it difficult for patients to interpret what seems to be wrong and explain something the way a provider wants/expects, or to know when they should see a doctor in the first place.
Providers may disbelieve a patient’s reported high pain level because their body language doesn’t match how a neurotypical patient in great pain would act, or because they don’t believe the source of pain could actually be that painful for them since most people wouldn’t be that bothered. For example, I saw a tweet once in a Twitter discussion where the author was ranking things on the 1-10 pain scale and put having an IV at 10, above giving birth. (I didn’t think to save it at the time to cite more specifically.) That’s the kind of thing where a doctor would easily disbelieve someone, but it has a huge impact on a patient’s hospital experience and ability to get care.
Another factor too is financial resources – we’re more likely to be unemployed due to disability and/or employer prejudice (I’ve seen a shocking ~85% unemployment rate thrown around, but given that autistics who are too disabled to work (or work without accommodations) are more likely to be picked up by the diagnostic system than those of us whose traits can be masked well enough or are “professionally useful” enough to get by fairly well, I’m sure it’s not that bad actually), which means in America at least, we’re less likely to have the financial means to access care.
Overlap with the trans and broader LGBTQIA+ community
More than 1 in 6 autistics – 18.7% – identified as transgender in the aforementioned community survey (Bonnello, 2022). 12.32% of autistic respondents identified as asexual, compared to just 4.14% of non-autistic respondents in the same survey (2022). Autistic respondents were also more likely to be gay, lesbian, bisexual, pansexual, and “other,” with a greater portion of the autistic than non-autistic population identifying as such in all categories, and only 34.92% of autistic individuals identifying as heterosexual compared to 63.40% of non-autistic respondents (Bonnello, 2022). This means that the LGBTQIA+ experience, and especially the ace and trans experience, is a key part of the autistic experience.
The suicide rates are important here. Autists have a 9 times greater chance of suicidal ideation and 5 times greater chance of a suicide attempt compared to the general population (Lewis et al, 2021). According to the Trevor Project, 45% of LGBTQ youth seriously considered attempting suicide in the past year, including more than half of transgender and nonbinary youth (2022 or 23). Therefore, we’re (I’m also non-binary) most likely contributing to each other’s suicide rates / lifespan statistics. Key point here: LGBTQIA+ rights/acceptance includes autistic rights/acceptance, and vice versa. Part of supporting either community is supporting the other.
Conclusion
Something I’d like to see more info on is a breakdown on demographics. For example, how does the average lifespan for an autistic white cis man compare to an autistic Black trans woman? Can we separate LGBTQIA+ and non-LGBTQIA+ autists in data to measure the difference that overlap makes? There are so many combinations of lived experiences, that while 17 years is an eye-opening stat compared to nothing, we could go so much deeper still.
The big point I want to end with is a reminder that a lot of these problems are a result of how other people treat us, not things that are inherent to being autistic (or LGBTQIA+). They shouldn’t be used as talking points for why being autistic is a tragedy, but as an argument for why we as a society need to do better at accepting and respecting human diversity. Which is why I think the issue is important for people to be aware of, so we understand how important it is to do better in terms of listening to the autistic community, trusting and accommodating people when they (say they) operate differently instead of trying to force neurotypical ways of operating on everyone, etc.
P.S. On a happier note, happy Pride Month!
~ Your friendly (virtual) neighborhood aroace enby queer person
References:
Bonnello, C. (2022). Results and Analysis of the Autistic Not Weird 2022 Autism Survey. Autistic Not Weird. https://doi.org/10.1007/s10803-020-04696-whttps://autisticnotweird.com/autismsurvey/?fbclid=IwAR3wyD7QKwUQJ3lPY2Fd4mk0-9wGRWgrBS9obShTQT1TnOxEjQ5bcbERvvM
Centers for Disease Control and Prevention. (2023). Data & Statistics on Autism Spectrum Disorder. National Center on Birth Defects and Developmental Disabilities. https://www.cdc.gov/ncbddd/autism/data.html.
Demmler, J., Atkinson, M., Reinhold, E., Choy, E. Lyons, R., & Brophy, S. (2019). Diagnosed prevalence of Ehlers-Danlos syndrome and hypermobility spectrum disorder in Wales, UK: a national electronic cohort study and case-control comparison. BMJ Open, National Library of Medicine, 9(11), e031365.
Lewis, L. F., Ward, C., Jarvis, N., & Cawley, E. (2021). “Straight Sex is Complicated Enough!”: The Lived Experiences of Autistics Who are Gay, Lesbian, Bisexual, Asexual, or Other Sexual Orientations. Journal of Autism & Developmental Disorders, 51(7), 2324–2337. https://doi.org/10.1007/s10803-020-04696-w
Mason, D., Ingham, B., Birtles, H., Michael, C., Scarlett, C., James, I. A., Brown, T., Woodbury-Smith, M., Wilson, C., Finch, T., & Parr, J. R. (2021). How to Improve Healthcare for Autistic People: A Qualitative Study of the Views of Autistic People and Clinicians. Autism: The International Journal of Research and Practice, 25(3), 774–785.
National Institutes of Health. (2017). Post-Traumatic Stress Disorder (PTSD). National Institute of Mental Health. https://www.nimh.nih.gov/health/statistics/post-traumatic-stress-disorder-ptsd.
It keeps inserting an image telling me the page doesn’t exist when I copy the link despite the fact that I’m literally looking at it as I’m writing this, but the LGBTQIA+ stats are from the Trever Project’s “Facts About LGBTQ Youth Suicide.”
Can you write more about it? Your articles are always helpful to me. Thank you!