This World Autism Month, one statistic will appear everywhere: 1 in 4 autistic children meet the criteria for "profound autism." It's a powerful number, drawn from the CDC's first-ever prevalence study using the Lancet Commission's definition, and it has rightly focused attention on a population with significant, lifelong support needs. But as someone who has spent over a decade working with autism data at Autism Speaks and in academic research, I want to ask an uncomfortable question: what about the other three in four?
The emergence of "profound autism" as a category has been an important step in our field. The 2021 Lancet Commission on the Future of Care and Clinical Research in Autism argued that people requiring 24-hour care were being obscured by a diagnostic category broad enough to include individuals earning college degrees. The CDC's 2023 study, led by Hughes and colleagues, confirmed that 26.7% of 8-year-olds with autism met the profound autism criteria — defined as being nonverbal or minimally verbal, or having an IQ below 50. These individuals do need dedicated attention, research, and resources. I am not disputing that.
What concerns me is what happens to the conversation — and ultimately to policy and funding — when profound autism dominates the narrative to the exclusion of everything else.
The Mental Health Crisis Hiding in Plain Sight
Among autistic adults who do not meet the criteria for profound autism — the majority — mental health is quietly reaching crisis levels. Meta-analyses consistently show that anxiety affects 27% to 66% of autistic adults, and depression affects 23% to 40%. A 2024 national study of privately insured autistic adults found that 55% had anxiety disorders and nearly 43% had mood disorders, compared to roughly 17% and 13% in the general population. These are not marginal differences. They represent a population experiencing mental health challenges at three to four times the rate of their non-autistic peers.
Yet when the public discourse centers on profound autism — on individuals who may never live independently or communicate verbally — the mental health needs of autistic people who can speak, who may hold jobs or attend college, but who are struggling profoundly in ways that are less visible, tend to get pushed to the margins. Depression, anxiety, social isolation, and suicidality among autistic adults without intellectual disability are not less real because the individuals experiencing them can articulate their suffering. If anything, the ability to mask these struggles makes them harder to detect and easier to dismiss.
The Employment Paradox
Employment is another area where the profound autism framing creates unintended consequences. Some advocates within the profound autism community have emphasized that their children will never be able to work — a reality for some, and an important point about the need for lifelong residential and care supports. But this framing can inadvertently shape public perception of all autistic people as unable to participate in the workforce.
The data tells a more nuanced story. Estimates of unemployment among autistic adults range from 40% to as high as 85%, depending on the study and methodology. An 8-year longitudinal study from the Netherlands found that the largest group of autistic adults in their sample was characterized by stable unemployment over time. Only about 14% of autistic adults in the U.S. hold paid jobs, according to the National Autism Indicators Report, and those who do often work part-time at low wages.
These aren't people who can't work. Many are people who face barriers in hiring processes built around neurotypical social expectations, workplaces that don't provide sensory accommodations, and a broader culture that still misunderstands what autistic employees are capable of. When we allow "they can never work" to become the dominant narrative, we risk undermining the case for supported employment programs, workplace accommodations, and hiring initiatives that could transform outcomes for the majority of autistic adults.
The Funding Squeeze That Hurts Everyone
And then there's the funding landscape — which, in the current political environment, should alarm the entire autism community. Congress has approved nearly $1 trillion in cuts to Medicaid, set to roll out over the next decade starting in late 2026. The Department of Defense, which had been investing $15 million annually in autism research, did not include autism among its funded programs in 2025. The Administration's budget proposal cuts nearly $20.5 billion from NIH, about 40% of its current budget. University Centers for Excellence in Developmental Disabilities face potential elimination. And the Administration for Community Living, which funds disability research and independent living services, has already seen nearly half its staff laid off.
In this environment, a narrative that positions profound autism as the "real" autism — the autism that deserves resources — risks creating exactly the kind of scarcity argument that policymakers use to justify cuts. If the public and legislators come to see autism services as primarily benefiting a small population requiring extremely expensive lifelong care, it becomes easier to frame those costs as unsustainable. Meanwhile, the mental health services, employment supports, educational accommodations, and community-based programs that serve the broader autistic population get squeezed from both sides: too expensive to fund for the "severely disabled," and not severe enough to justify for everyone else.
This is not a hypothetical concern. Home and community-based services, which many autistic adults rely on, are among the first programs states are expected to cut when federal Medicaid funding shrinks. As Zoe Gross of the Autistic Self Advocacy Network has noted, states facing massive losses in federal Medicaid funding will cut HCBS first precisely because they are optional under federal law.
A Rising Tide Lifts All Boats
I want to be clear: the point of this piece is not to minimize the very real needs of people with profound autism. Families caring for individuals who require 24-hour supervision, who experience self-injurious behaviors, who cannot communicate their basic needs — they deserve every resource and every research dollar we can direct their way. The Lancet Commission was right that this population had been underserved and under-studied.
But the autism community is stronger together than it is divided into camps. When we advocate for better mental health services for autistic adults, we build infrastructure that also serves people with profound autism and their families, who experience extraordinarily high rates of caregiver stress and depression. When we push for employment supports and workplace accommodations, we expand public understanding of autism in ways that benefit everyone on the spectrum. When we fight Medicaid cuts, we are protecting the residential care that people with profound autism need and the community-based services that others rely on.
The alternative — a fractured community where profound autism advocates and neurodiversity advocates talk past each other, where different segments of the spectrum compete for a shrinking pool of resources — only serves the interests of those who would rather not fund any of it.
A rising tide lifts all boats. Better data, better services, better policy, and a louder collective voice — these benefit every autistic person, regardless of where they fall on the spectrum. The question this World Autism Month isn't which autistic people deserve our attention. It's whether we have the courage to demand attention for all of them.
As researchers, advocates, and policymakers, we have a responsibility to hold both truths simultaneously: that profound autism requires specialized attention, and that the majority of autistic people face challenges — mental health crises, employment barriers, inadequate services — that are no less urgent for being less visible. The data supports a both/and approach. The community needs one.
This World Autism Month, I'm asking for a bigger conversation. Not instead of profound autism — alongside it.