Reaching underrepresented communities in autism research

Despite major advances in autism research over the years, there is still a lot we don’t know it. One big problem, is that many communities are underrepresented.

Dr. Robin Kochel is an Associate Professor of Pediatrics/ Psychology at Baylor College of Medicine and Associate Director of Research at the Texas Children’s Hospital Autism Center. Dr. Kochel is also the lead on a landmark study, “SPARK for Autism”.

“SPARK stand for the ‘Simons Foundation Powering Autism Research for Knowledge’. Basically we're trying to enroll families into what will be the largest U.S.-based study of individuals with autism and their family members," Dr. Kochel says. "We're looking to enroll 50,000 individuals across the country. Basically we're collecting both clinical information as well as genetic information through a saliva sample.”

Dr. Kochel says in order to get the most accurate picture of autism they need everyone to participate who is affected.

“Right now we know that families of color are currently underrepresented in the collection,” Dr. Kochel says. “So we're trying to initiate some new strategies to try to reach those communities and involve their participation.”

Dr. Kochel says one of the things researchers are focusing on the understanding more about genetic etiologies for autism.

“So that's certainly one of the hopes is we'll be able to identify more new genetic causes for autism,” Dr. Kochel says. “Again, along the same lines, we want to be able to match individuals up with the best treatments for them. So we're hoping that maybe some genetic information will be helpful in order for us to really think more about precision medicine going forward.”

Families interested in participating can learn more information at