In a February 2021 Facebook Live presentation sponsored by Seattle Children’s Hospital, Jill Escher, the president of the National Council on Severe Autism (NCSA), called for splitting the autism spectrum.

In some individuals, autism spectrum disorder (ASD) presents as a serious developmental disability affecting communication, learning, motivation, and all aspects of daily living. These individuals require 24/7 level care. Others on the spectrum have mild differences in social skills and sensory perception. This latter group may contain some who possess high IQs and hold advanced degrees. They are independent and can follow health care advice.

Health care professionals cannot get a proper understanding of a population that varies so greatly in its presentation from person to person. Health care policymakers and lawmakers cannot retrieve clear data and make informed decisions on such a broad population.

Retrieving and analyzing data about a specific population helps us understand health care disparities and assists us with quality and costs of care. Population health carries the promise that evidence-based practices for a particular condition will reach patients faster and in a more organized fashion. When the population is so haphazardly defined, this may be difficult to accomplish.

If the American Psychiatric Association (APA) and others split the spectrum into well-defined categories, big data could help us retrieve meaningful information about those on all parts of the spectrum. Analysts could compare the information for those diagnosed with various types of autism versus that of the general population.

Families in the severe autism community know that there is an enormous problem with health care disparities for their significantly disabled loved ones. Individuals who live in group homes, shared living, or intermediate care facilities may not receive colonoscopies every five years after age 50. Staff/caregivers may not have the resources to do the preparation and make the procedure happen. Individuals with severe autism may not have access to healthy foods and exercise. Obesity can be an issue. These problems may not exist for those at the mildest end of the spectrum.

Some individuals diagnosed with autism need specialized instruction to cooperate with hearing, vision, and other medical tests. Many never receive this specialized instruction. There may not be accommodations for behavioral health screens for the severe autism population. Costs of care are higher for those on the autism spectrum. But are costs higher for the entire spectrum? Most likely, the higher costs are for severe end of the spectrum. If the individual cannot express himself, we don’t know where to look when a health care problem arises. This may increase the cost of care.

Legislative advocacy has become difficult for the severe autism population since the DSM-5 lumped Asperger’s syndrome with autism spectrum disorders (ASD). Further complicating the matter, a new population recently emerged who identify as “autistic” without having a diagnosis from a qualified health care professional.

Without a clear distinction for various parts of the spectrum, we are comparing apples and oranges. We will not render meaningful information, and we make it difficult for the entire spectrum, but especially for those most affected.

Health care professionals can help the autism community:

• Contact the American Psychiatric Association (APA) and ask them to consider splitting the spectrum into clearly defined diagnostic categories in the Diagnostic and Statistical Manual (DSM).
• Help the National Council on Severe Autism (NCSA). Urge family members of those on the severe end of the spectrum to consider becoming involved with the NCSA.
• Advocate for a wide range of service delivery settings to fit the diverse needs of individuals on the spectrum.
• Support research on intervention and services specifically geared towards the more severe end of the spectrum.

Irene Tanzman is a patient advocate and author of Abie and Arlene’s Autism War.

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