Tuesday, May 28, 2013

Are Wealthy White Kids Over-Diagnosed with Autism? Are We Cheating Poor Minority Children?

A new study out from the Journal of Special Education (hat tip, Christina Samuels) finds that there is a “disproportionate representation” of white children diagnosed with autism spectrum disorders. While fifteen years ago (1998-1999) black children were overrepresented as autistic in American classrooms,  that number has decreased every year. Now, black children are far less likely than any other race – Asian , white, American Indian, Hispanic – to be classified as eligible for autism services.

Less and less, race is a proxy for socio-economic levels. But there's still some correlation and that correlation appears to exist in this study, which also reports that Asian students are now almost as likely to be diagnosed with autism as white students. In other words, white and Asian children are now twice as likely to be labeled "autistic" as black, Hispanic, and American Indian children.

The study is important on two levels. First, New Jersey has long had the reputation of disproportionately classifying poor and minority students – especially African-American boys -- as eligible for special education services. (Camden Central High School, for example, classifies a full third of their students as  meeting the qualifications for one of the dozen or so different disabilities that result in eligibility for special education services.) This trend of overclassifying black boys is  often ascribed to incentives like extra state and federal aid available for kids with disabilities,  the lack of other ways to provide  (necessary) extra services engendered by poverty, not disability, and NCLB-related concerns about lowering school-wide standardized test scores. (A small percentage of kids with disabilities are allowed to take alternative portfolio-like assessments.)

But the trendlines for autism are different than those for other disabilities.

There’s a sense, I: suppose, in which autism is a designer disorder. For reasons that escape me, a label of “autism” seems to have far more cachet than a label of “multiply-disabled” or “preschool handicapped.”*  The diagnosis process itself involves lots of tests and doctors and, sometimes, savvy advocacy from parents.  Standard treatments for autism (Applied Behavioral Analysis in particular) are expensive and hard to implement in a standard public school day. It's cheaper for a public school to provide services for kid with labels like "learning disabled" or "cognitively impaired" or "emotionally disturbed."  (Witness the thriving industry in NJ of private schools that serve kids with autism.)

There’s research on this.  A paper from the Department of Preventive Medicine and Community Health at New Jersey Medical School reports that in NJ, autism spectrum disorders are diagnosed in 17.2 cases per 1000 children in homes with median incomes above $90K and only in 7.1 cases per 1000 children in homes with median incomes less than $30K.  Also see “Socioeconomic Inequality in the Prevalence of Autism Spectrum Disorder: Evidence from a US Cross-Sectional Study,” which notes that “as parental education and wealth increase, the chance that a child with autism will receive an accurate diagnosis also increases. A number of investigators and recent reviews of the epidemiology of autism have concluded that any association observed between autism risk and SES has been due to such bias.”

And, by the way, a  2003 study of Camden City found that Camden’s rate of autism among schoolchildren was half that of NJ’s average.

Are we accurately diagnosing wealthier children with autism (rates in NJ now stand at the really scary 1 in 49 kids) and underdiagnosing poorer children? Or are we overdiagnosing wealthier children and underdiagnosing poorer children? Is there something in the water in Short Hills that’s damaging young children’s neurology?  Or does navigating NJ’s special education labyrinth, especially the autism maze, require more resources and advocacy skill than those available to families in Trenton?
 

*Full disclosure: my youngest son has Fragile X Syndrome, which can cause behaviors similar to autism and, in a minority of cases, causes severe autism. We've been luckier than that,  but Caleb has “autistic-like” symptoms and is regarded as “on the spectrum.” It’s complicated. Technically he’s classified as “Other Health Impaired.”

2 comments:

  1. re: cachet of autism as a diagnosis, from my view it seems related to to the aspie-pride movement, as well as the "autistic cognitive style" concept (coined by Tyler Cowen?), and the visibility of writers like Temple Grandin.

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