It has long been known that African American students are disproportionately diagnosed — over-diagnosed? — with learning and other disabilities. Ed Week cites 2008 government data from the Equity Alliance at Arizona State University according to which African-American students are “nearly or greater than twice as likely as white students to be classified with emotional or intellectual disabilities.” Nirvi Shaf at Ed Week’s On Special Education blog provides more statistics to underscore the extent of the problem:

While African Americans make up approximately 17 percent of public school enrollment, they account for 31 percent of students identified as having mental retardation or intellectual disabilities, 28 percent of students labeled as having an emotional disturbance, and 21 percent of students who have learning disabilities. Some of these categories aren’t pure medical diagnoses, calling judgment, and perhaps bias, into play.

The National Association for the Education of African American Children with Learning Disabilities is addressing this discrepancy by seeking to train parents to better advocate for their children. The Association aims to use grant money from the Oak Foundation to create 20 African American master teachers and train more than 1,100 parents to advocate for their children.

Stating that “advocacy and special education go hand in hand,” Shah points out that parents who are the proverbial “squeaky wheel” and actively seek out diagnoses and services “do have a leg up over parents who rely on schools to do the heavy lifting.” Parents should not be faulted for needing to learn how to advocate for a child. My husband and I have been advocating for our son Charlie‘s education for the past 12-plus years and it is never easy. Education doesn’t just teach Charlie academics, but is preparing him for his whole life. When you have this thought in mind, and you’re trying to figure out “goals and objectives,” “services” and a “behavior intervention plan” for your child, emotions readily intrude into a parent’s carefully thought out requests and a little training in advocacy can go a long way.

Race and the Diagnosis of Autism

In a parenthetical remark, Shah makes an observation that suggests the extent to which race plays an unacknowledged role in “what” a child is diagnosed with:

I have been told by some special educators that while some white students are diagnosed with having autism based on their characteristics, sometimes, black children with identical behavior will wind up with a diagnosis of emotional or behavioral disturbance based on parents’ persistence, or lack thereof.

Such a claim may sound shocking. But race and ethnicity do play a role in what diagnosis a child might receive.

In 2010, a study found “clusters” of autism in southern California and the San Francisco Bay Area — in areas where parents were “older, white and highly educated.” Such parents may be more likely to have access to more resources (to hire lawyers and their own therapists and advocates) as well as the time to demand services and educational programs for their children and therefore have children who are more likely to be diagnosed with autism.

Despite the study’s findings, parents of autistic children have tended to shy away from such research that correlates parental levels of education and race with autism diagnoses. In the past, parents who were professors, physicists and in similar professions were singled out by psychiatrist Leo Kanner, who first described infantile autism in 1943. The belief was that such highly educated parents were themselves the cause of their child being autistic, due to the mistaken idea that intellectual parents were emotionally withdrawn from their children.

We now know that autism occurs across all races and ethnicities and among parents of all educational backgrounds and economic status. We need to acknowledge that race does play a role in the diagnosis of disabilities in children. Research has shown that rates of learning disabilities and conditions such as attention deficit hyperactivity disorder are notably lower in Asian American students, in some cases due to shame about a family member being diagnosed with a disability. A family may keep such information within itself or not even seek diagnosis for a disability. School personnel may themselves be less likely to suggest a learning disability in an Asian American student, due to an unacknowledged adherence to the “model minority” myth of Asian American students being routinely successful academically.

Today, as we celebrate Martin Luther King, Jr. day and the victories of the civil rights movement, we still need to realize unconscious assumptions and beliefs that may influence our thinking even about something like a “clinical” and “medical” diagnosis of learning and other disabilities. A diagnosis can determine what kind of education a child receives, so it is a powerful tool. All parents should be empowered to advocate for their children to receive the most appropriate education possible.

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