Why Are Minority Children with ASD Left Out of Research?
A 2016 study speaks to how we can diversify participants in autism research.
Posted Aug 30, 2018
My co-author for the post this month is Yasamine Bolourian, Ph.D. candidate at University of California, Riverside.
This week, one of my Ph.D. students sent me this article about how to improve recruitment and retention of minority children with autism in genetic research. This topic is close to my heart as both a neuroscientist and assistant director of a free screening clinic for autism. This combines my two passions: helping those who are underserved and underrepresented, and increasing our knowledge and understanding of autism. I wanted to use this post to summarize the findings of the article, and also to talk about some research we are conducting at UCR to help with these efforts.
The most critical part of this type of research is understanding why it is conducted. We know that autism does not discriminate, and prevalence seems equal across cultural and ethnic groups. However, there are huge racial and ethnic disparities when it comes to diagnosis and access to services. Further, individuals from lower socioeconomic status groups, and those from racial and ethnic backgrounds other than non-Hispanic Caucasians are underrepresented in research. There are multiple reasons for this disparity in research participation, including: exclusion of non-English speakers in research studies, lack of effective recruitment efforts in these populations, and distrust of researchers and/or methods from individuals in these communities.
These issues have widespread implications. For example, if research about how to best help families of children with ASD is done primarily with non-Hispanic whites, then *that* is the population for whom those findings are accurate, and that is the population the research benefits. By continuing to recruit and research only certain populations, we perpetuate the cycle of research not being applicable to or benefiting minority children and their families. It makes sense, then, that research groups want to break the cycle and be more effective in broadening diversity in research samples.
In the article I was sent, researchers discussed strategies for increasing research participation of Latinos in a genetic autism study. They utilized culture-specific parent-centered strategies in order to specifically recruit Latino participants. These strategies included:
- Partnering with a well-known community-based organization which serves Latino families of children with disabilities.
- Research staff discuss information directly (face to face) with parents attending conferences and resource fairs put on by the organization.
- Having a bilingual Latina recruiter and research team member available to answer questions and provide recommendations/follow-up care.
These strategies were highly successful. 82.5 percent of participants were Latino, and 67 percent of parents spoke Spanish as their primary language. Interestingly, half of the families in this study were recruited by "traditional" methods (e.g. flyers in clinics and waiting rooms), and half were recruited via the parent-centered strategies (support groups and by personal invitation from other parents). Perhaps most importantly, Latino families were significantly more likely to have been recruited via the culture-specific parent-centered strategies compared to non-Latino families.
These findings provide a helpful template to help other research centers diversify research participation, including our own at the SEARCH Center:
- Our Center has recently begun working with Fiesta Educativa, a non-profit community-based organization whose mission is to provide information and training to Latino families on how to access disability-related services and resources in order to meet their children’s needs. This collaboration has opened up pathways that connect us with Latino parents of children with special needs. For instance, active parent members have agreed to speak about our studies at their support groups and to invite other parents to participate in our research.
- Our team of doctoral-level graduate students attend community events, such as parent workshops and conferences hosted by local schools or autism networks. Here, they man our information table, pass out our study flyers, and talk one-on-one to families about research opportunities at our Center.
- Lastly, SEARCH Staff includes a bilingual coordinator, as well as several bilingual graduate students and volunteer research assistants, all of whom are fluent in written and oral Spanish. This has been helpful not only in minimizing language barriers to recruitment and other research activities, but also in helping us provide educational access and screening and consultation services to Latino families.
Overall, we hope to be as successful in our efforts as the 2016 study. I am optimistic about the efforts to increase diversity in research, and hope to see more studies like this in the future!
Zamora, I., Williams, M.E., Higareda, M. et al. J Autism Dev Disord (2016) 46: 698. https://doi.org/10.1007/s10803-015-2603-6