Black families becoming more aware of autism

JAZELLE HUNT | 4/21/2014, 10:14 a.m.
As Camille Proctor watched her 1-year-old son, she knew something wasn’t right
Ari, Camille Proctor’s son, was diagnosed with autism at 15 months old. Courtesy of Camille Proctor of The Color of Autism

WASHINGTON (NNPA) – As Camille Proctor watched her 1-year-old son, she knew something wasn’t right. He played with others and enjoyed affection, but he never spoke. He also walked on his toes. His pediatrician assured Proctor that her son was probably just developmentally delayed.

At 15 months old, she learned that wasn’t the case – he was officially diagnosed with autism spectrum disorder, a group of developmental disabilities that can cause significant social, communication and behavioral challenges.

“My son didn’t have the telltale signs, but I figured it out without the diagnosis. I had to basically force a diagnosis for my son so he could get the services he needed,” Proctor said. “But it was hard because now I had a name for what his problem was, but that wasn’t helpful for me going through it every day.”

Autism diagnosis rates are skyrocketing. In 2012, the Centers for Disease Control reported that 1 in 88 children had a disorder on the spectrum. By last month, that number had jumped 30 percent to 1 in 68 children.

Although autism rates are highest among Whites, particularly males, studies show that African American children are usually diagnosed much later than their White counterparts.

Because little is understood about autism, information and resources are hard to come by, especially for families of color. Because of that, in 2009, Proctor launched The Color of Autism, a nonprofit organization dedicated to advocacy, awareness and knowledge among Black parents, connecting families to local services, and providing one-to-one support.

“I have exhausted my 401(k) and my son’s father did too, because nobody told us all we needed to do was fill out this 100-page document, get it approved, and he could get all these services for free,” Proctor stated. “I only found out because another parent at my son’s swim class asked if I was going to put him in hippotherapy [therapeutic horseback riding targeted for autism], but I said I couldn’t afford it. And she told me Medicaid would pay for it.”

Part of the dearth of information aimed at Black families is because concerted, grounded research did not begin until the 1980s (before then, ASD therapy consisted of electroshock therapy, institutionalization and drugs). Few researchers have chosen to examine how the spectrum manifests in people of color.

A research team at the UCLA Center for Autism Research and Treatment is working to change that. Dr. Daniel Geschwind and his team have been identifying and studying the genetic causes of autism, how those genetic anomalies manifest in ASD symptoms, and how treatments can be designed around this information. Last year, Geschwind was awarded a $10 million grant from the National Institutes of Health to expand his research to study African American genes.

“After 10 or 12 years of doing this … I started to realize that from a public health standpoint, it’s time to apply the success [of previous research] to other groups. We lead the field in finding these genes, and I think the next step is the inclusion of underrepresented minority groups in genetic studies – I feel very strongly about that,” Geschwind said. “It’s incredibly important because now, when a person with European genes comes into the [Autism Center] clinic, there’s a 1 in 10 or 1 in 5 chance we can get a diagnosis for them. We assume that would be almost essentially the same for someone with African ancestry, but we actually don’t know.”