For years, autism has gone largely undiagnosed or mistreated amongst the black community, as research and funding has been geared toward white, affluent communities. This has been a problem since autism came into public consciousness in the 1940s, but in 2016, it’s high time we find a solution.
Autism first came into public consciousness as a diagnosable disease thanks to child psychiatrist Leo Kanner, who studied patients at Johns Hopkins Hospital and wrote a paper in 1943 describing what he called “early infantile autism.” This breakthrough paper described 11 children who were highly intelligent but displayed a “powerful desire for aloneness” and an “obsessive insistence on persistent sameness.” Kanner is considered one of the finest psychiatrists of the 20th century, and his diagnosis of autism was a huge breakthrough for the medical field.
However, none of those 11 children he worked with in his study were black, despite the fact that many of the hospital’s patients at that time were low-income people of color. This unfortunately set the precedent for autism being seen as an illness that only affected the affluent upper class white demographic. Kanner helped perpetuate this untruth by believing that ASD disproportionately affected those who came from very ambitious, upper middle class families.
Obviously this thinking has no basis in fact, but even in 2016, we’re still seeing the need for more racial diversity in the diagnosis and treatment of autism in people of color. A 2010 report by researchers at the Washington University School of Medicine found that African Americans are severely underrepresented in genetic databases for autism research. This lack of research on a huge demographic has led to misdiagnoses including mental retardation and ADHD.
Advocacy groups are working to change public consciousness on this important issue. The nonprofit foundation Color of Autism seeks to highlight the disparities by educating and assisting African American families with children on the spectrum. A recently published anthology called All the Weight of Our Dreams highlights the voices of people of color living with autism. And while NPR covered the challenges of autism and racial bias earlier this year, we need more mainstream media attention on improving this disparity. Greater awareness that autism has nothing to do with the color of one’s skin can lead to earlier diagnosis, and in turn, earlier interventions and better care.