Autism in Minorities: A History of Misdiagnosis
In a powerful new essay for Undark, Steve Silberman, author of the 2015 book “NeuroTribes: The Legacy of Autism and the Future of Neurodiversity,” uncovers the troubling history of clinical bias and misdiagnosis of African-Americans with autism. Long thought to be a “white” affliction, Silberman explains how clearly autistic black children were diagnosed with anything but — from attention-deficit/hyperactivity disorder to generic “mental retardation.” Readers can share their thoughts on this sad legacy in the comments below.
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With so many colleagues and friends as educators and health care providers, I’ll be sharing this important piece. The disparities access to care are already upsetting, and recognizing the additional layers of autism misdiagnosis in minorities is critical.
In addition to the extra difficulty being properly diagnosed, the stigma in the black community is a factor, as you stated. So often we have heard it’s a discipline issue! It also is so sad that even when they have gotten the medical diagnosis, many parents feel the need to keep it “secret” and feel shamed or embarrassed to say their child has autism.
Like other people are saying, thank you for sharing this. I feel it is very important to put this on as many people’s radar as possible. I think things are changing for the better. I have worked in an innercity school for 10 years and I have met many students of color diagnosed with autism. In my community, the people who think terrible things like: “they just don’t know any better.” when looking at young people in my school’s behavior is starting to dwindle.
THANK YOU so much for this piece! I’ve read Neurotribes and I’m familiar with your studies. I am an African-American mother of an African-American son who has autism. He is 16-years-old and you cannot imagine the relief it is to finally see some real attention being paid to the racial disparities among individuals with autism. The work here is just the beginning. As I read the article, I immediately began thinking of all of the other cultural barriers that can affect the diagnosis–living below the poverty line or living in a rural community. The sometimes debilitating isolation that comes with being doubly-marginalized (black and autistic) is often overlooked in the mainstream as well as communities of color. I appreciate your effort in bringing these issues to the light.
> I immediately began thinking of all of the other cultural barriers that can affect the diagnosis–living below the poverty line or living in a rural community.
Definitely. Thanks so much, Kristie!
Thank you for this article! I’m following along to see how this discussion develops. I appreciate the fact that others are finally talking about this! I’ve long felt it to be the elephant in the room in many a discussion about autism. Addressing the stigma within minority communities is still in it’s infancy. That’s a barrier that has to be destroyed from within. I’m also excited to discover others engaged in that work. Thank you again for this article!
Thank YOU, Samantha!
That’s an excellent point, Camille, and I’m especially glad to hear you make it and speak out on this issue as the founder and director of The Color of Autism Foundation. It’s really important – and something we want to try to do generally at the magazine, and specially with this piece – to not only give visibility to issues that need more attention but to give visibility to groups like your own that are working to make a difference. I mean that seriously.
Thanks for your support!
One of he biggest issues is the failure of the large national organizations to meet communities of color where they are. For years, they’ve failed to forge partnerships with grassroots organizations that have outreach in these communities. This oversight has caused a disconnect between the underserved and the large organizations. There’s a very clear breakdown of communication when you have large NPOs that “speak”, but don’t listen. You can’t tell people what they need without finding out what they want!
> You can’t tell people what they need without finding out what they want!
Exactly, Camille. Thanks!
Steve, thanks for mentioning The Color of Autism Foundation in your piece. It’s difficult to foster a meaningful relationship with a community that you have no ties to?