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Autism studies may ignore key ethnicity information

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Laura Geggel
25 February 2014

More than 70 percent of autism studies don't record the ethnicity of their participants, and fewer than half of the studies that do analyze the impact of the data, reports a review published 4 February in the Journal of Autism and Developmental Disorders.

This shortcoming could hinder researchers from spotting important trends in the diagnosis and treatment of autism.

It also makes it difficult to replicate those studies, make comparisons with other work or generalize the findings across different ethnic or racial groups with the disorder.

For their review, the researchers examined 491 studies published in even years from 2000 to 2010 in three journals: Autism, Journal of Autism and Developmental Disorders and Focus on Autism and Other Developmental Disabilities.

Overall, the Journal of Autism and Developmental Disorders had the best track record, with 36 percent of its 303 articles reporting ethnicity data. Autism was close behind at 34 percent. Only 11 percent of the studies in Focus on Autism and Other Developmental Disabilities included this type of information.

In total, 138 studies included information about the ethnic origin of their participants, but only 64 of them analyzed ethnicity as a factor. Ethnicity proved to be a significant factor in 12 of the 64 studies and didn’t affect the results of 26 others. Another 26 studies were too small to draw firm conclusions about the role of ethnicity.

Basing research on large, diverse study groups can reveal risk factors specific to particular ethnic or cultural groups. For instance, one of the dozen studies that analyzed ethnicity data found that several factors elevate the risk of hospitalization for children with autism, including adoption and living in a single-parent home. And it found that African-American children with autism have a particularly high risk of being hospitalized for the disorder.

An extended hospital stay drives up treatment costs and places the child in an unfamiliar setting, which children with autism find particularly difficult to cope with. Identifying autism in African-American children early would improve their access to diagnosis and treatment and prevent these hardships.

However, African-American parents are sometimes reluctant to screen their children for autism, delaying diagnosis, according to one study. This may explain why some African-American children are diagnosed later than other children.

In another example of the importance of culture, a study found that Islamic families highly value interventions that improve their children’s communication in Arabic so that the children can practice their religion. Professionals aware of this may be able to match therapists who speak Arabic with these families.

Even when the results of a study apply equally across ethnic groups, information about ethnic origin can inform clinical practice and diagnosis. For example, 1-year-old infants later diagnosed with autism show more repetitive behaviors than typically developing babies do, regardless of their ethnicity.

Taking ethnicity into account can also uncover important differences in prescription rates and health care access. One study found that Hispanic children with autism are less likely to be prescribed medications for autism and related conditions such as depression than are white and African-American children.

This may be because Hispanic children have fewer symptoms that respond to treatment or receive fewer prescriptions from their doctors than other children do. Only a study that includes ethnicity in its analysis can resolve questions like this one.

News and Opinion articles on SFARI.org are editorially independent of the Simons Foundation.

Comments

Name: Mark Baker
27 February 2014 - 1:21AM

Yes, ethnicity may turn out to be an important factor in autism. Researchers have already discovered many risk factors for the disease. Autism doesn't just happen - women need to take control of their environment and lower their risk factors for the healthiest new baby. See Dr. Debby Hamilton MD's new book Preventing Autism & ADHD: Controlling Risk Factors Before, During & After Pregnancy.

Name: Anonymous
28 February 2014 - 3:20AM

hi mark, can you link me to a site with any information on race and ethnicity regarding autism? I am researching this topic and am having a hard time finding any information.

Thanks

Name: Laura Geggel
28 February 2014 - 3:59PM

Hi Anonymous,

Check out the links under “Related Content” at the bottom of the article for more coverage about ethnicity, race and autism. Here are several more stories that SFARI.org has written about the topic:

http://sfari.org/news-and-opinion/news/2011/researchers-track-down-autism-rates-across-the-globe
http://sfari.org/news-and-opinion/specials/2012/outlook-autism/culture-diverse-diagnostics
http://sfari.org/news-and-opinion/blog/2010/culture-shock

Thanks for reading SFARI.org,
Laura

Name: Atiya
5 March 2014 - 4:36PM

While I understand the need of Arabic speaking families, or any language for that matter, to desire the child to comprehend in the parents language, not knowing or understanding Arabic does not prevent one from practicing Islam.
While I personally know that understanding Arabic does enhance the experience, statements like the ones above marginalize other people from a way of life.

I would expect that articles are throughly researched not only for their science but their social aspects as well.

Name: jeanann kerr
29 March 2014 - 5:39PM

I think we need to use Occam's razor on this problem. The studies I have been reading are working with too many variables though these facts may be true enough. We need to look for causes.

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