Response to Letter to the Editor: “‘Profound Autism’ Label Does Not Predict Strengths or Help Plan Supports”

We appreciate the letter by Kripke-Ludwig ¹ and the opportunity to further clarify our article’s ² intent on the newly proposed classification of “profound autism.” The Lancet Commission, which describes itself as being composed of “clinicians and other health-care providers, researchers, advocates, self-advocates, and parents,” developed the definition of profound autism to indicate a group likely needing services and support throughout their life span. ³ As Kripke-Ludwig states, those who meet the criteria for profound autism may benefit from services and support, such as augmentative and alternative communication tools and therapy to overcome sensory and movement disabilities, to help them meet their full potential. Many questions have been raised about the term profound autism, and our study addressed some of these questions by contributing population-based data. ²

The validity of the definition of profound autism is not well established. However, these same critiques by Kripke-Ludwig could be (and have been) applied to autism as a whole. ⁴ The wide variability in symptoms, lack of common etiology, and differences in needs among people with autism were motivating factors in developing a specific subgroup. To determine whether this term is useful or meaningful, many studies will be needed. Our study applied the definition of profound autism to population-level data. Using these data, we were able to describe the characteristics of this population, understand changes in prevalence over time, and determine differences by sex, race and ethnicity, and geography. ² This research was a start to evaluating this term and understanding how common it is for people with autism to meet the criteria and whether the term disproportionately includes individuals with certain characteristics. Kripke-Ludwig cited the data from our article—that most individuals met the criteria for profound autism by meeting only 1 of the criteria—to make an argument about the heterogeneity of the characteristics of individuals in this group. This use of our data illustrates the purpose of our research: to contribute data to advance our understanding and discussion of this group. With additional data and discourse, the definition of profound autism may be refined or modified, much like the criteria for autism have evolved over time.

Specifically related to our findings, stratifying groups with profound autism and non–profound autism revealed trends and disparities that are masked when examining autism prevalence overall. ² Those who meet the criteria for profound autism are a minority among people with autism, and their proportional representation among those with autism has decreased over time. Black children had a higher prevalence of profound autism than White children did. Wide variation across sites in the prevalence of non–profound autism indicates likely differences in community autism screening and identification practices for those for whom autism is less apparent. As the prevalence of children identified with autism rises and the composition of those identified with autism changes, findings such as ours can be helpful to monitor changes and identify disparities to help communities focus identification and support efforts. The Centers for Disease Control and Prevention is providing population-level data about profound autism to support planning and continuing discussion about the term.