09/06/2026
Iโm Cyndi Wall, the Digital Content Coordinator for NCSA. Iโm also the mother of a 35-year-old son with profound autism, and I have spent more than three decades as an autism advocate.
I asked Jackie Kancir, Executive Director of NCSA, for permission to use this platform to share my concerns about the IACCโs refined definition of โprofound autism.โ She agreed, but I want to establish that the concerns and opinions that follow are entirely my own.
There is much to celebrate in IACCโs new Strategic Plan. Families of people with severe autism have fought for years to bring attention to medical complexity, regression, wandering, dangerous behavior, and lifelong caregiving needs. I am one of them.
But I have serious concerns about the new definition of profound autism, particularly the decision to move away from intellectual disability as a qualifying pathway.
IACCโs definition applies to people age 8 or older with autism who have minimal or no functional speech, including those who are nonspeaking, use single words or 2 to 3 word phrases primarily for basic needs, wants, or protests, and/or have limited ability to engage in flexible, reciprocal, or generative communication. They must also require continuous or near-continuous supervision and substantial assistance with activities of daily living. Intellectual disability is neither required nor presumed.
The concern about presuming intellectual disability in nonspeaking people is legitimate. Lack of verbal speech should never automatically be interpreted as lack of understanding or intelligence.
But intellectual disability was never required under previous definitions of profound autism. It was one pathway.
That distinction is critical.
Protecting one group should not make another disappear.
The term โprofound autismโ did not begin with IACC. The Lancet Commission introduced the designation in 2022 to draw attention to people with autism with significant impairments and lifelong, round-the-clock support needs who were being underserved and underrepresented in research.
That approach was examined more closely in a 2026 consensus study led by Matthew Siegel and colleagues. The resulting research definition required severe adaptive impairment and adult supervision for health and safety, along with severely impaired cognitive ability, reflected by an IQ below 50, and/or extremely limited verbal communication.
Importantly, the researchers were well aware of the problems with IQ testing in this population. Ninety-six percent of respondents agreed that people with profound autism can struggle to complete IQ assessments. There was considerable disagreement over what IQ cutoff should be used, but only 32 percent agreed that IQ should be excluded from the definition altogether. The final definition therefore retained severe cognitive impairment as one pathway alongside minimal verbal ability.
We should absolutely protect nonspeaking people from being wrongly presumed intellectually disabled. But we should not accomplish that by making people with genuine, severe intellectual disability less visible. Some people with autism genuinely have intellectual disability. Recognizing that reality does not diminish the competence or potential of nonspeaking people whose cognitive abilities may have been underestimated.
"Presuming competence" is a principle for how we treat and communicate with someone. It is not a determination that the person does not have an intellectual disability.
There is another tension here that deserves consideration. We are increasingly hearing that many nonspeaking autistic people have sophisticated language and cognitive abilities that they express through spelling, typing, AAC, or other forms of communication. I am not here to debate those claims.
However, if we accept that a nonspeaking person is independently expressing complex thoughts, feelings, academic knowledge, or written language through another modality, then that communication should matter. The fact that the words do not come out of the personโs mouth should not, by itself, make their autism more โprofound.โ
At the same time, someone with more spoken language may have severe intellectual disability, extremely low adaptive functioning, profound behavioral and safety challenges, and require lifelong 24-hour care.
Why should the first person have a clearer pathway into profound autism than the second?
There is no one in the autism community who fights harder for caregivers of people with severe and profound autism than Jackie Kancir. Her commitment to making caregivers and their children visible is unparalleled.
I spent time with Jackieโs daughter, Jadyne, during NCSAโs Washington, D.C. trip last year. She has a bit more spoken language than many people I have met with severe or profound autism. She also has significant communication/articulation challenges that leave her extremely vulnerable and difficult to understand, even with AAC assistance.
Whether Jadyne meets IACCโs new definition may now depend on how broadly โlimited ability to engage in flexible, reciprocal, or generative communicationโ is interpreted.
Yet there is no ambiguity about the severity of her disability or the intensity of her lifelong support needs.
If someone like Jadyne has profound adaptive impairment, requires lifelong supervision, and has a genuine intellectual disability, should her place within โprofound autismโ depend on whether her communication is judged limited enough?
That should concern us.
The strongest consensus in the Siegel study was actually around something other than IQ or language. There was 97 percent agreement that people with profound autism require adult support for basic needs and 24/7 access to an adult for safety. There was also 97 percent agreement that adaptive functioning is significantly below age expectations. The authors described the need for adult support as a core defining feature of profound autism.
Perhaps that is where our main focus should be.
Communication matters. Cognition matters. Presuming competence matters. But so do adaptive functioning, safety, independence, behavior, and the intensity and permanence of lifelong support.
Profound autism was created because people with the greatest disabilities were becoming nearly invisible within an autism spectrum that had grown extraordinarily broad.
We should not solve one problem of exclusion by creating another.
If a narrowed definition of profound autism leaves profoundly disabled people with intellectual disability outside the very category created to make their needs visible, then the definition needs more work.
The definition of "profound autism" was always AND/OR Intellectual Disability. It did not need to be removed from the definition.
Sincerely and respectully submitted,
Cyndi Wall - Aliesmom
