I am autistic. When I read the APA’s statement responding to the White House, I was struck less by what it says, and more by all the things it doesn’t say — the real, lived risks that autistic people face every day. I want to speak up, because this is not just an academic debate. For many of us, these omissions are matters of health, dignity, and sometimes survival.
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What I see, from lived experience
When your brain develops differently, it’s not just about communication or behavior. It means you often deal with other health problems: sleep doesn’t come easily, digestion can be a mess, stress and sensory overwhelm are constant. Simple things for others — pain, illness, tiredness — are often missed or misinterpreted when you're autistic. Medical professionals might think “that’s just part of their autism” rather than investigating further. It’s exhausting. It’s risky.
Being autistic means being more vulnerable in so many ways:
to co-occurring physical illness (things like epilepsy, heart issues, immune problems)
to mental health challenges (anxiety, depression, suicidal thoughts)
to being dismissed or misunderstood by systems that weren’t built for us
What the data says — to back up the urgency
Here are findings from peer-reviewed studies that show what we’re up against. These are not theoretical: they show measurable harm.
Study / Location Key Finding(s)
New South Wales, Australia (2019) — “Mortality and Cause of Death of Australians on the Autism Spectrum”** Over a cohort of ~35,929 autistic individuals (ages 5-64), the mortality rate was ≈2.06 times higher than the general population. Co-occurring intellectual disability (ID), epilepsy, mental health conditions, and chronic physical health conditions increase risk.
Sweden — Hirvikoski et al., “Premature mortality in autism spectrum disorder” (2016) In that nation-wide population register study, autistic adults died on average 16 years younger than people in the general population. Causes of death included natural causes (epilepsy, cardiovascular, respiratory) and suicide. The risk was even higher for those with intellectual disability.
Global meta-analysis — Catalá-López et al. (2022) Across 27 studies with over 640,000 individuals, people with autism had significantly higher mortality from both natural and unnatural causes: risk ratio (RR) for all-cause mortality among people with ASD was ~2.37 times higher than non-ASD populations.
Life expectancy studies — O’Nions et al. (2023) Compared to U.S. national mortality statistics, autistic men’s life expectancy was reduced by ~6.1 years; for autistic women, ~12.3 years.
How the DSM-5 / Institutional Frameworks Make Things Worse
Because the DSM-5 defines what counts as “autism spectrum disorder” in the U.S., it has huge real-world effects: diagnosis, access to services, insurance coverage, funding for research. But:
It tends to treat autism as primarily a psychiatric/behavioral category, which focuses attention on mental health, communication, and behavior, often at the expense of physical health and co-occurring conditions.
It fails to capture many of the sensory, regulatory, medical, and physical health differences that autistic people frequently experience.
Because DSM criteria are used by insurers, healthcare systems, schools: if those systems don’t “see” or recognize the physical health risks, they don’t allocate resources to them.
There is often a gap between what the research shows and what the DSM criteria acknowledge; that gap can mean delay or denial of needed care.
What I want/What needs to change
This is what feels essential, from where I stand:
1. Acknowledge mortality & health risks openly
There needs to be transparency. When statements talk about vaccines, treatments, diagnoses, but leave out that autistic people are statistically more likely to die younger — that’s erasing something very real.
2. Collect better data in the U.S.
We need large population-based studies here, including on causes of death, physical health conditions, lifespan, and how those differ across support levels, intersectional factors (race, gender, etc.).
3. Revise diagnostic & service frameworks to include physical health
DSM revisions (or supplemental guidelines) should reflect the research: co-occurring medical issues, physical risk factors, not just mental health/behavioral profiles.
4. Training & awareness for health professionals
Providers need better training to avoid “diagnostic overshadowing” (where physical symptoms are dismissed as “just autism”), to understand how sensory, communication, and cognitive differences affect how people experience illness, pain, and care.
5. Policy & funding that respond to full health needs
Insurance, healthcare systems, public health policy must address not only therapies for behavior but also prevention, early detection, and treatment of physical health conditions. Support systems (accessibility, accommodations) matter.
I want it to be clear: autism isn’t just about being different in how you think or communicate. For many autistic people, it means living inside a body that needs more care, more understanding, and more protection. We deserve statements, research, and policies that acknowledge that reality. Because to leave it out is not just ignoring discomfort — it is, too often, an oversight that costs lives.
