Interesting: study finds autism studies rarely consider diversity of participants

Autism is still highly studied, but a new study has found that the research used to identify “evidence-based practices” very rarely reports racial and ethnic status of its participants and this could be an issue for helping kids with autism.

From the press release:

“I think teachers and researchers can tend to categorize these methods with the label evidence-based practices and assume they will be effective when that’s not always the case,” said Jason Travers, assistant professor of special education at the University of Kansas and a co-author of the study. “In our field we’ve been working to identify practices that are effective for students with autism. By clarifying how racial and ethnic diversity of participants impacts intervention effects, we can increase the probability of educational benefit.”

Travers and co-authors examined 408 peer-reviewed, published studies of evidence-based practices for autism intervention. Only 73 of them, or 17.9 percent, reported the race, ethnicity or nationality of participants. And of those, white children comprised a large majority. Of the nearly 2,500 participants in the studies, only 770 reported race, and 489 or 63.5 percent were white. Multiracial participants comprised 20.6 percent; black and Asian participants represented 6.8 percent and 5.2 percent, respectively; Hispanic/Latino comprised 2.5 percent; Middle Eastern participants made up 1.3 percent, and only one Native American participant was reported.

The study was co-authored by Elizabeth West, Talya Kemper, Lisa Liberty, Debra Cote, Meaghan McCollow and L. Lynn Stansberry Brusnahan and was published in the Journal of Special Education. The authors are members of the diversity committee on the Council for Exceptional Children’s Division of Autism and Developmental Disorders.

In the field of special education and autism research, there is a debate about whether race is an important factor to consider in whether a young person will respond to an evidence-based practice. The authors argue it is important to consider.

“We looked into race because other researchers suggested it may be underreported in the intervention resistance literature. Race is also a proxy to other factors we need to know about, such as poverty, nutrition, socioeconomic status, exposure to toxins, parents’ primary language, immigrant status, whether parents were likely to get prenatal care and many others that can be deleterious to educational outcomes,” Travers said.

One concern with the studies not considering race is most of them used single-case experimental designs, which only require one or a few participants. The authors confirm that autism can be a difficult topic around which to build multiparticipant studies. It can also be difficult to recruit and retain participants who lack resources often necessary to take part in such studies. For that reason, the authors call for grants from federal and research funding agencies specifically for studies that are designed to recruit a diverse body of participants.

“We’ve relied heavily on single-case experimental design in autism research,” Travers said. “Participant race isn’t always something that influences whether an intervention is effective in a single-case experiment. But it’s worth reporting because race may be associated with other factors that may influence responding. The low reporting overall and the large percentage of white participants may be a problem of convenience or resources. But this presents a risk of assuming an intervention will be as effective for diverse learners with autism.”

The researchers argue that teachers of students with autism are by and large passionate, driven professionals who want to do the best for their students but might not be able to do so if they are not given the best possible tools. It is also important to consider that an evidence-based practice that is effective for some children may not be for others. By clarifying who benefits from different interventions and why, we might better serve racially and ethnically diverse students with autism, Travers added.

“Research is needed to A) better understand reluctance to participate among diverse members of society; B) improve recruitment and retention of diverse participants in autism spectrum disorder intervention research and C) contribute to the development of standardized methods of collecting and storing detailed information about participants that are conducive to systematic reviews and meta-analyses of intervention efficacy for learners with distinct profiles,” the authors wrote.

Abstract of the study:

Selection of a special education evidence-based practice (EBP) requires developing an understanding of what interventions work as well as for whom they are effective. This review examined participant characteristics in the EBP literature for learners with autism spectrum disorders (ASD) identified by the National Professional Development Center on Autism Spectrum Disorders. Results indicated very limited representation of diverse participants in the entire body of research, and when reported, White youth represented a large majority of study participants. This work is an attempt to begin to better understand the extent that various contextual factors are reported in a body of literature used to identify EBPs. Implications for ASD research are discussed along with recommendations for future research.

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