In recent years, advocacy and policy discourse has introduced the term “profound autism,” often used to refer to autistic people with high support needs. While this terminology may seem descriptive, lawmakers should note that “profound autism” is not a diagnosis recognized by the DSM‑5‑TR (the Diagnostic and Statistical Manual of Mental Disorders, Text Revision). Its use risks conflating social policy decisions with clinical science—and may inadvertently create inequities in access to services.
What the DSM‑5‑TR Actually Says
The DSM‑5‑TR defines Autism Spectrum Disorder (ASD) as a single diagnostic entity characterized by differences in social communication and the presence of restricted, repetitive patterns of behavior. Within ASD, clinicians note three severity levels—Levels 1, 2, and 3—which describe the amount of support required across two domains: social communication and restricted/repetitive behaviors.
- Level 1: Requires support
- Level 2: Requires substantial support
- Level 3: Requires very substantial support
Importantly, these levels denote support needs rather than competence, functioning, or intelligence. The DSM does not subdivide autism into “mild,” “moderate,” or “profound” forms.
Adaptive Functioning Is Not the Same as Intelligence
Many proponents of the “profound autism” label reference limitations in adaptive functioning—skills required for daily living, such as communication, self-care, and social participation. However, adaptive functioning measures reflect how well an individual’s skills meet environmental demands, not their cognitive ability or potential. Two autistic people with similar IQ scores may have very different adaptive profiles depending on context, supports, and opportunities.
Equating low adaptive skills with “profound” autism collapses these distinctions and obscures the real issue: the adequacy of supports and accommodations provided.
A Service Gap, Not a Diagnostic Gap
Policymakers sometimes adopt new labels hoping to better target funding for people with higher support needs. However, diagnostic labels are not mechanisms for allocating services. Funding decisions—whether under Medicaid, IDEA, or state disability agencies—are policy frameworks, not clinical ones. Misframing a political or administrative category as a medical diagnosis risks excluding people who do not fit neatly into that label, even when their needs are equivalent.
The Risk of Politicizing Diagnostic Categories
Reifying “profound autism” into policy language gives a political construct the weight of clinical validity. This conflation can:
- Undermine diagnostic integrity by introducing non‑scientific terminology into legal and funding systems.
- Create arbitrary eligibility barriers based on unrecognized criteria.
- Divide the autistic community and reinforce stigma by implying a hierarchy of “real” vs. “less real” autism.
Evidence‑Based Policy Recommendation
Lawmakers should ground legislation and budget decisions in functional support needs, adaptive functioning data, and evidence‑based service criteria—not in unofficial diagnostic labels. The DSM‑5‑TR already provides the clinical framework needed to describe varying levels of support. The policy challenge is to ensure systems are flexible and adequately resourced to meet those needs without resorting to categories the field itself does not recognize.
This Is Not Autism 