In September 2023, President Biden announced health care provider training, allocating over $8 million through 18 awards to train primary care medical students, physician assistant students, and medical residents in providing culturally and linguistically appropriate care for individuals with limited English proficiency, as well as those with physical or intellectual and developmental disabilities.
Individuals with severe and profound autism deserve special consideration when it comes to accommodating their health care needs, as they face unique challenges.
Adults with autism have an increased risk of premature mortality compared to the general population, with a mean age of mortality at 54 years compared to 70 years. This risk is even more pronounced for those with lower functioning abilities, where the mean age of mortality drops to 40 years. Limited research on health care barriers suggests that health services, funding, and physician training are not yet adequately meeting the needs of this population.
These individuals may struggle to communicate their pain or discomfort and may resist cooperating with medical procedures. Moreover, they may lack an understanding of nonverbal cues and find unfamiliar environments and procedures extremely frightening. It often requires years of desensitization programming and behavior modification for individuals with severe autism to become comfortable with medical tests and procedures. Some may even display aggressive or self-injurious behaviors when faced with medical procedures, necessitating collaboration and brainstorming among health care professionals and other caregivers. This is a complex issue.
The Biden administration believes that a mere $8 million can help individuals with intellectual and developmental disabilities access health care. However, addressing the challenges faced by this population is not as straightforward as such a small funding amount might suggest. Furthermore, by grouping this effort together with assisting individuals with limited English proficiency, the administration may overlook the distinctive nature of the challenges posed by severe/profound autism.
According to the National Council on Severe Autism, autism policy has shifted away from addressing the needs of children and adults severely disabled by autism, instead focusing on solutions more suitable for those with milder disabilities who can self-advocate. If this provider training initiative is intended to address the needs of individuals with severe/profound autism, the Biden administration risks trivializing the challenges faced by these families.
Irene Tanzman is a patient advocate and author of Abie and Arlene’s Autism War.
