Why The Term Profound Autism is Needed

What is Profound Autism?

Simply stated, people with profound autism require lifetime, 24/7 care.

The definition of autism has evolved over the years, creating an increasingly heterogeneous spectrum. While the entire spectrum deserves recognition and support, profound autism is a term intended to provide clarification about autistic people who:

• Require 24/7 care from an adult caregiver throughout their lives;

And also:

• Present with an IQ below 50;
• or have minimal or no language.

Based on previous work by the Lancet Commission^[1] published in 2021, the Centers for Disease Control released their first prevalence study^[2] on profound autism in April 2023.

The research concluded that:

• The percentage of 8-year-old children with profound autism among those with autism was 26.7%. This means that 1 in 4 children with autism have profound autism.
• Compared with children with non–profound autism, children with profound autism were more likely to be:
  • female;
  • from racial and ethnic minority groups;
  • of low socioeconomic status;
  • born preterm or with low birth weight;
  • have self-injurious behaviors;
  • have seizure disorders;
  • and have lower adaptive scores.

Why the need for the term profound autism?

• People with profound autism consistently experience unique, devastating, and often unseen challenges that require solutions, not only for them but for their caregivers.
• Research indicates that the proportion of studies that included those with profound autism has decreased significantly over time.^[3] The continuing recognition of profound autism will open the doors to more inclusive research. Only then can targeted advocacy increase access to critically needed supports and services for this marginalized population.

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^[1] Lord C, Charman T, Havdahl A, Carbone P, Anagnostou E, Boyd B, Carr T, de Vries PJ, Dissanayake C, Divan G, Freitag CM, Gotelli MM, Kasari C, Knapp M, Mundy P, Plank A, Scahill L, Servili C, Shattuck P, Simonoff E, Singer AT, Slonims V, Wang PP, Ysrraelit MC, Jellett R, Pickles A, Cusack J, Howlin P, Szatmari P, Holbrook A, Toolan C, McCauley JB. The Lancet Commission on the future of care and clinical research in autism. Lancet. 2022 Jan 15;399(10321):271-334. doi: 10.1016/S0140-6736(21)01541-5. Epub 2021 Dec 6. Erratum in: Lancet. 2022 Dec 3;400(10367):1926. PMID: 34883054.

^[2] Hughes MM, Shaw KA, DiRienzo M, et al. The Prevalence and Characteristics of Children With Profound Autism, 15 Sites, United States, 2000-2016. Public Health Reports. 2023;0(0). doi:10.1177/00333549231163551

^[3] Stedman, Amy & Taylor, Briana & Erard, Michael & Peura, Christine & Siegel, Matthew. (2019). Are Children Severely Affected by Autism Spectrum Disorder Underrepresented in Treatment Studies? An Analysis of the Literature. Journal of Autism and Developmental Disorders. 49. 10.1007/s10803-018-3844-y.

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