Posted by Autism Speaks Assistant Director of Public Health Research Amy M. Daniels, PhD, and Assistant Director of Dissemination Science Lauren Elder, PhD.
Last week we had the privilege of serving as panelists at an inspiring film screening and autism awareness event in New York City. Colored My Mind is both a powerful documentary and a non-profit foundation created by five moms of children with autism. Their goal: “to raise awareness around autism and bring extra light to the disparities in diagnosis and treatment in Black and Brown communities.”
The screening and discussion was hosted by several Viacom employee groups. Our panel moderator was Autism Speaks board member, actress, author and activist mom Holly Robinson Peete.
As many of our readers know, Autism Speaks has a very special interest in reducing the age of autism diagnosis and treatment nationally and worldwide. In particular, our Early Access to Care initiative emphasizes closing the gap in autism awareness and services in ethnic and other underserved communities. We continue to fund research on identifying their needs and addressing them in practical and culturally respectful ways.
One of the major themes that emerged from the evening was the importance of “community” in raising awareness and helping families get the care their children need. In their film and panel discussion, these moms helped us understand the problems that result when the media doesn’t adequately represent minorities in its portrayal of autism. One mom recalled being told “Blacks don’t get autism!” when sharing the news of her own child’s diagnosis.
As panelists, we were able to answer many questions about autism and share what we’re learning about disparities in screening, diagnosis and treatment in underserved communities.
Just as important, we listened.
Much of what we heard helped validate Autism Speaks efforts. For instance, the mothers on the panel expressed how they wished they had resources like Autism Speaks 100 Day Tool Kit when their autism journeys began! They also enthusiastically supported our efforts to reach out to underserved African American and Latino communities through trusted local networks such as churches, schools and community centers.
“We need to take ‘fear’ out of the picture,” one mom said.
“We need to create a new language around autism for our communities,” another concurred, explaining that parents need to learn how to “lovingly” educate friends, neighbors, police and others about autism.
How timely that this panel discussion took place as we enter February, a time when we honor the rich history of African Americans. As we celebrate this history, we want to redouble our year-round efforts to break down barriers to timely diagnosis, treatment and lifelong support for all. We’re so grateful to be part of this effort.
And we’d love to hear from you. Please write us at ScienceChat@autismspeaks.org.
Through its Early Access to Care initiative, Autism Speaks is funding research and community resources aimed at lowering the age of diagnosis and increasing access to early intervention – with a special focus on underserved communities. Learn more about the initiative here.