“Profound Autism” Label Does Not Predict Strengths or Help Plan Supports

In their article “The Prevalence and Characteristics of Children With Profound Autism, 15 Sites, United States, 2000-2016,” Hughes et al ¹ observe that autism is a heterogeneous condition. They describe a subset of autistics using the Lancet Commission on the Future of Care and Clinical Research of Autism’s proposed administrative term “profound autism.” The intent of the term is to label autistics who will need lifelong high-level support. The term “profound autism” does not have any biologic or neurologic meaning. High-support needs are associated with being “nonverbal” or “minimally verbal” and/or having a score <50 on an intelligence quotient (IQ) test. The commission used these proxies to define a service and research population. ² The term “nonverbal” comes from the Latin verbum, which means “a word” or “language” and falsely implies that people who have sensory–motor difficulties with producing speech do not understand and cannot use language. Autistics who do not use speech reliably to communicate do typically have high-support needs. However, it is isolating, dehumanizing, and misleading for professionals making prognoses or planning services to make the false assumption that if autistics do not use speech reliably, then they also lack language. ³ As Hughes et al acknowledge, the validity of the term “profound autism” is highly debated.^4,5 However, they ignore the debate in their article and advance adoption of the label by determining prevalence estimates and stating that “additional studies are needed to . . . understand how profiles can inform decision-making for supports and services in addition to prognostic utility.” ¹ The label is not useful for predicting strengths or planning supports.

The article by Hughes et al fosters the misconception that people who cannot speak or who have a low score on an IQ test have little to contribute to their community. Speech is a complex sensory–movement skill. Many nonspeaking autistics learn to overcome sensory and movement disabilities to type or spell. Other nonspeaking autistics use word-based forms of augmentative and alternative communication. Autistics with IQ scores <50 may be underestimated because they lack the prerequisite sensory and motor skills for valid IQ testing. ⁴

With regard to planning supports, most children in the study met the case definition of profound autism by meeting only 1 criterion. The fact that the population of autistics with speech disabilities has little overlap with the population of people with IQ scores <50 indicates that the definition of profound autism is heterogeneous. Heterogeneity is the problem that defining a subpopulation was supposed to address, which argues against the usefulness of the definition. Lumping together people with speech and cognitive disabilities to determine prognoses or plan services leads to putting autistics with speech disabilities into programs designed for people with cognitive disabilities. Lumping autistics together with people with different neurology makes inappropriate service plans more likely than if assessments and services are individualized.

Service providers and autistics themselves have not called for a new label. Person-centered planning is based on goals and needs, not on speech abilities or IQ scores. Service needs depend as much on environment and skills as on functional strengths and limitations. The term “profound autism,” like the terms “high functioning” and “low functioning,” dismisses the service needs of people who do not meet the definition, and it ignores the strengths of people who do. Labeling people by their functioning level has been rejected by the disability community. ³

Institutional review boards were developed in response to unethical research on people with disabilities. The study by Hughes et al was exempted from review. However, it should not have been exempted from the responsibility of public health researchers to partner with people affected by being labeled with a pejorative term. ⁶ Nonspeaking autistics and autistics with intellectual disabilities would have pointed out the problems with the study before it was conducted. Hughes et al do quote the website of an autism organization that does not have any autistic board members and that has many position statements opposed by autistic self-advocacy organizations. Instead, they should have engaged representatives of the autistic self-advocacy community when designing their study. ⁶ Nonspeaking autistics and autistics with intellectual disabilities obtain college degrees, complete certificate programs, and lead organizations such as CommunicationFIRST, the Autistic Self Advocacy Network, and the Academic Autism Spectrum Partnership in Research and Education. Not all profound autistics speak, but they have plenty to say.