I was formally diagnosed with autism and ADHD at the age of 44. I finally had an explanation for why so many things in my life seemed so much harder for me than for others. There was a reason I often felt like the people around me were having two conversations – one with words that I had full access to and one I could sort of sense was there but couldn’t access or even verify was real and not all in my head.
For all my relief at diagnosis, the clinical experience itself was traumatizing. The assessor experienced transference – crying and telling me how likely I was to be assaulted or killed. My subsequent diagnostic report (the first draft, anyway) blamed my autistic traits for my perceptions of the assessor’s misconduct and speculated that I was “interested in only what she enjoys and her happiness” and “seeming only … able to care about her own wishes or agenda” with zero evidence beyond the disproven stereotype that autistic people lack empathy.
While the extremity of my experience was unusual, having one’s autistic traits weaponized to undermine their perceptions and self-advocacy is quite common.
The Research-to-Stigma Pipeline
The prevalence of stigmatizing language embedded in scientific, diagnostic, and educational materials surrounding autism has a steep cost for autistic people. We can trace this harm from the biases embedded in diagnostic criteria and research policies to autistic people’s lived experiences.
There are more than 6 million autistic people in the US. More than 5 million of them are adults, yet only 4.3% of research funding examines the autistic lifespan after age 18. Meanwhile, autistic adults experience disproportionately high suicide rates (Bentum et al., 2024; Cassidy et al., 2022, 2022; Di Salvo et al., 2024; Kirby et al., 2024; Lai et al., 2023; Newell et al., 2023) and health problems (Croen et al., 2015) and tend to die earlier than non-autistic adults (Forsyth et al., 2023; Hirvikoski et al., 2016; Huang et al., 2024; Smith DaWalt et al., 2019). Here’s the most important part: our autism correlates with all these negative outcomes (that means the diagnosis appears alongside these other variables in predictable ways), but it doesn’t cause them.
As recently as 2025, autism has been framed as a “preventable disease” that “destroys families” (Seitz, 2025). Pathologizing diagnostic language classifies autistic behaviors as “persistent deficits” in social communication and interaction (CDC, 2024). A 2007 New York University Child Study Center’s “Ransom Notes” public service campaign likened a child’s autism diagnosis to their parents receiving a threat of lifelong harm from a kidnapper (Kras, 2010). O. Ivar Lovaas, founder of Applied Behavior Analysis (ABA), famously said, “You see, you start pretty much from scratch when you work with an autistic child… they are not people in the psychological sense… you have to build the person” (Chance, 1974).
The man who in 2015 described autistic children as having brains that are “gone” and compared autism to a “Holocaust” caused by vaccines is now the Secretary of Health and Human Services (White, 2015). My own diagnostician felt comfortable speculating that I was fundamentally incapable of caring about others—a conclusion he reached through decades of research that positioned autistic people as inherently selfish.
Lessons from Other Marginalized Communities
There is very little research on how this stigma impacts autistic people (Turnock et al., 2022), but there are decades of research on how stigma impacts other marginalized populations. The findings are devastating.
Twenty years of Native American mascot research shows that stigmatizing representations cause measurable psychological harm (Watts & Kallmaker, 2004; Davis-Delano et al., 2020). When Native youth are exposed to mascots like Chief Wahoo, they experience lower self-esteem, reduced belief in their community’s potential, and fewer achievement-related goals for their futures (Fryberg et al., 2008).
Sun et al. found that Black patients face 2.54 times higher odds of having negative descriptors in their electronic health records (2022). A scoping review of nine studies identifying stigmatizing language’s correlation with race in healthcare settings found similar results, warning “clinical notes that reflect clinician bias may harm the patient-clinician relationship and hinder or damage the establishment of trust” (Barcelona et al., 2024, p. 11).
The pattern is clear: when marginalized communities are researched without their meaningful participation, harmful stereotypes get embedded in “objective” documentation that follows people throughout their lives.
Current Research Failures
Today’s autism research landscape continues this pattern. The recent NIH-CMS partnership promises to advance understanding of autism through secure access to Medicare and Medicaid data—a massive investment in studying us without including our voices. This approach can only capture what’s already documented in biased medical records.
In contrast, my team’s Ohio Department of Developmental Disabilities-funded research with autistic and ADHD adults found that our community prioritizes preventing nervous system dysregulation for improving health—knowledge that would never appear in claims data because it emerges from understanding what it’s like to exist in an autistic body-brain, not how medical systems categorize our experiences.
What Community-Led Research Achieves
The alternative already exists, and it works. The Autism and Suicide Prevention Working Group, which includes autistic and nonautistic researchers, has co-created evidence-based crisis toolkits and resources (Resources | Autism Crisis Support by Lisa Morgan, n.d.). The Academic Autism Spectrum Partnership in Research and Education (AASPIRE) has used a community-based participatory research model for more than two decades, creating numerous survey instruments and research guidelines while conducting vital studies on employment and healthcare (Nicolaidis et al., 2019; AASPIRE Survey Instruments – Academic Autism Spectrum Partnership in Research and Education, n.d.).
My own all-autistic and ADHD team’s inspiration was the Tojisha-Kenkyu model developed at the University of Tokyo, where people with lived experience of a condition find commonalities among themselves before traditional research methods investigate biological and social mechanisms (Kumagaya, 2015). We conducted 734 research touchpoints with our community. The result was “Decide,” an app designed by and for our community that helps with decision-making challenges.
The outcomes speak for themselves: 77.3% of users reported improved awareness of how their actions affect their wellbeing, 100% found the community-designed app useful, and 55% felt calm while using it (with only 7% reporting anxiety) (Palma et al., 2025). These represent real people whose daily lives became easier because research finally centered their actual needs.
The Stakes Are Life and Death
Every diagnostic report using deficit-based language, every research study excluding autistic voices, and every funding decision prioritizing causation over community support contributes to psychologically harmful stigma.
My diagnostician’s claim that I’m unable to care about anything other than my own happiness could have shaped decades of how I understood myself and how others understood me. Multiply that by millions of autistic people receiving similar messages throughout their lives, and the connection between research practices and our community’s mental health crisis becomes impossible to ignore.
As federal agencies invest millions in new autism data collection, we have a critical opportunity to demand a different approach. We need to include autistic researchers as co-investigators, fund disability-led research initiatives, and audit existing diagnostic language for stigmatizing content using natural language processing tools already proven effective in healthcare settings.
The choice isn’t just about better research—it’s about whether the next generation of autistic people will grow up seeing themselves as valuable human beings deserving of support or as problems to be solved. The evidence from multiple marginalized communities is clear: when we control our own narratives, everyone benefits. When we don’t, people die.
Our lives depend on what comes next.
Dr. Shannan Palma is the Co-Founder and Co-Executive Director of the Autistic Self-Reliance Support Network, and the Founder and CEO of ITI Assistive Technologies Inc.
Sources
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