Expanding the autism evidence base: Strategies to increase participant representation.
Academic Article
Overview
abstract
There is a lack of representation of racially diverse individuals who are multilingual from low-income households in autism research. This calls into question the generalizability of research findings derived from predominantly White, English-speaking samples. In this article, we bring forth an important argument about why we as an autism field should work to expand representation in research samples. We also discuss strategies that can be used to work toward this goal. We detail the recruitment and retention of 94 Spanish-English bilingual Latinx (primarily Mexican and Central American) families from low-income households across a large urban city and its surrounding communities in the United States for an assessment validation study. We use the method of this study as an example of how to engage and include underrepresented populations in autism research, describing the efforts that were implemented to engage families and community-based organizations serving this population. We conclude the report by summarizing culturally sensitive strategies researchers can use to engage populations of different races and ethnicities from low-income households in their own research studies, in hopes of increasing representation in the autism science field and ensuring that research findings are applicable across populations, including those who have been historically underrepresented.Lay AbstractIndividuals of different races and identities from low-income households and their families are not adequately represented in research. This makes it difficult to know whether autism research findings apply to traditionally underserved individuals of color, since participants included in studies are usually White and speak English. We use our own study, where we successfully recruited 94 Spanish-English bilingual participants who are from Mexico and Central America but are currently living in the United States in low-income households for an assessment study, as an example to describe the strategies that were helpful to recruit participants with these sociodemographic characteristics. We end the article by discussing strategies that are culturally appropriate for researchers to consider when working with autistic populations of color who are from predominantly low-income households and their families.
