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Saturday, October 30, 2021

Including High-Support-Needs People in Autism Research

In The Politics of Autism, I discuss research priorities.

At The Journal of Autism and Developmental Disorders, Audrey Thurm and colleagues have an article titled "Making Research Possible: Barriers and Solutions For Those With ASD and ID." The abstract:
Participation in research can provide direct and indirect benefit to individuals with autism spectrum disorder (ASD), their caregivers, families, and society at large. Unfortunately, individuals with high support needs, including those with intellectual disability, cognitive disability or minimal verbal ability, are often systematically excluded from research on ASD. This limits the ability to generalize discoveries to all people with ASD, and results in a disparity in who benefits from research. This piece outlines the importance and extent of the problem, which is part of a broader lack of inclusivity in ASD research. It also provides examples of studies that have directly addressed issues that arise when conducting inclusive research and makes recommendations for researchers to reduce disparities in research participation.

From the article:

We must focus on ways to be more inclusive in studies that aim to be generalizable to all people with ASD, which must include people with ID. However, we must also remember that people with ID+ASD may require focused study, particularly around etiology and treatment. To achieve these goals, a comprehensive approach is required, including a) increased fexibility for study engagement to reduce participant and family burden, b) increased workforce training, including clinical training around ID for professionals (e.g., pediatricians, psychologists and psychiatrists), research staf, community liaisons, and others who may work directly on improving research methods for this population, c) new methods to increase the participation, compliance, and success of individuals with ID in clinical research (e.g., mobile technology, telehealth, telemetric assessments, use of alternative and augmentative communication), including both standardized and non-standardized measures, and most importantly, d) an overall goal of research that is relevant and useful for people with ID+ASD. This is to ensure there is better inclusion of, and more rigorous reporting of, cognitive abilities in study participants.