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Autism Research Misses Minorities as Study Subjects

Minority students are less likely to be identified with autism, but they are out there.

But most research into effective educational interventions has concerned white, English-speaking males with autism—prompting questions about whether some interventions touted as evidence-based are really the best fit for students who come from different backgrounds.

A report on this topic, "Racial and Ethnic Diversity of Participants in Research Supporting Evidence-Based Practices for Learners With Autism Spectrum Disorder," was published online in March in the Journal of Special Education. 

Elizabeth West, the lead author of the study, said she has observed such mismatches in classrooms of diverse systems. She said one commonly used tool, called the "picture exchange communication system," is an evidence-based practice that uses picture cards as a communication tool for students who have limited speech.

But "I see people using them with children who just immigrated, and the family doesn't speak English. When I speak with the family, they don't recognize the symbols," said West, who is an associate professor of special education at the University of Washington. Those families may not feel comfortable communicating with their child through that method, she suggested.

For the study, the researchers looked at 408 peer-reviewed, published studies of evidence-based practices for autism intervention.

The majority of those studies—335— didn't report the race, ethnicity or nationality of their subjects at all, even though most of the research was conducted on a single test subject. It's important to track the demographics of those students in order to be sure that an intervention is really generalizable, the review noted. 

Of the 73 studies where race was among the factors noted, 63.5 percent of the participants were white. Multiracial participants made up 20.6 percent, while 6.8 percent of study subjects were black, 5.2 percent were Asian, and 2.5 percent were Hispanic.

Middle Eastern participants made up 1.3 percent, and only one Native American participant was reported.

Overall, 74 percent of the study subjects were male, 15 percent were female, and 11 percent went unreported. 

That most of the study subjects were white and that in most studies, race wasn't considered a factor worth noting was "completely shocking" to the team involved in writing the paper, West said. 

"You'd think it would be a huge factor in establishing an evidence-based practice," West said. "When you're doing a study, you have to describe your participants well." 

West also said that the handful of studies that did have students of other races and nationalities participating did not attempt to draw any broader conclusions based on participants' backgrounds. 

Research money should be focused on boosting these efforts, West said. Also, she added that researchers should also carefully describe the participants in their studies, rather than assuming that race, ethnicity, or nationality is an irrelevant factor. 

"We have a sense of 'what works,' but for whom?" West said. "We really need to go out there and recruit more diverse kids for our studies." 

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