From Forbes Magazine's
Pharma & Healthcare Blog
By Emily Mullin
March 30, 2016
Autism affects individuals from all sorts of different backgrounds, but a new study suggests those from ethnically and culturally diverse families are not well represented in autism research. Instead, behavioral interventions and treatment programs for autism are largely tailored to white, middle-class children.
The findings, which appear in the Journal of Special Education, underscore the need to recruit study participants from all walks of life in order to develop effective care plans and therapies for children with autism spectrum disorder.
“The concern is that practitioners are taking these evidence-based practices that have only been applied to white children or predominately white children and are applying them to diverse children or those who may speak another language other than English,” said lead study author Elizabeth West, an associate professor of special education at the University of Washington, in an interview.
One such intervention is the picture exchange communication system (PECS), a program designed for nonverbal autistic children that uses pictures and symbols to encourage communication. But for culturally and linguistically diverse families who don’t understand the meaning of these symbols or have no context for them, this system is a barrier rather than a tool for autistic children in these communities.
As a result, West said some families may not be using these types of practices at home. This shows a need to adapt and adjust learning and behavioral interventions for a wide variety of people, she said.
To conduct their study, West and her colleagues analyzed 408 peer-reviewed, published papers on evidence-based practices for autism interventions in youth. They found that just 73 of these studies, or 17.9%, reported the race, ethnicity or nationality of participants–a lower number than they expected. In studies that did report this information, white children were a large majority.
In most of the studies, the 2,489 total participants’ race, ethnicity or nationality was not described or disclosed. Of the 770 participants whose characteristics were described, 489 or 63.5% were white. Multiracial study participants comprised 20.6% of the 770 described subset; black and Asian participants represented 6.8% and 5.2%, respectively; Hispanic/Latino comprised 2.5 percent; Middle Eastern participants made up 1.3%, and one Native American participant was reported.
Studies from 2013 and 2014 indicate that Caucasian children with autism are diagnosed differently, and often at significantly higher rates, than black, Asian, Hispanic, Middle Eastern, Native American and multiracial children.
Since children of middle- and upper-class white families tend to have better access to healthcare resources, including a pediatrician who monitors child development, white children might be more represented in these studies because they are diagnosed with autism at a younger age, West said.
“We do know autism does occur in culturally and linguistically diverse populations, but they’re identified a lot later in life,” West said.
Another factor that may contribute to the age at which autistic children in diverse populations are diagnosed is the language barrier for parents and family members.
West and her colleagues focused on race because it can often be an indicator of poverty, nutrition, socioeconomic status, exposure to toxins, immigrant status and whether parents were likely to get prenatal care and many others that can be deleterious to educational outcomes–factors that clinicians need to take into consideration when recommending a care plan tailored for a specific child.
West said a challenge of recruiting participants from diverse backgrounds is that these populations have historically been reluctant to participate in research studies.
Researchers know it’s difficult to recruit and retain people who lack the time and resources, such as reliable transportation, that are often needed to take part in such studies. For this reason, investigators need to better understand ways in which to design studies for participants of diverse backgrounds, the authors say.
“We think that if we do a better job of being more culturally responsive in reaching out in more appropriate ways to communities, we’ll be able to partner and have more diverse participants represented in our studies,” West said.
The researchers point out that an evidence-based practice that is effective for some children may not be for others and that healthcare practitioners should examine the degree to which positive results reported for a narrow group of participants effectively translates to autistic children from traditionally underrepresented groups.
By determining who benefits from different interventions and why, practitioners might be able to serve racially and ethnically diverse patients.