Autism spectrum disorders affect one in 68 people. Now researchers are collecting information and DNA samples from 50,000 people with autism and their family members, and they're sharing that information with other top autism experts and researchers in the nation. They believe that such a large database of information will start to unravel some of the genetic mysteries behind the disorder.
With the swipe of a cotton swab, Ben Tarasewicz, 14, is providing researchers a valuable piece of the autism puzzle: his DNA.
Ben's mother, Andrea Tarasewicz, says that she believes "any information they can get from this that will help him or the next person, it's what we all should be doing."
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The SPARK autism study, which stands for Simons Foundation Powering Autism Research for Knowledge, is collecting medical and behavioral information, along with DNA samples.
"Simply by saying that we need 50,000 people with autism to be registered, we're acknowledging that there's so much more to know. And we need all of these people in this massive database," said Latha Soorya, Ph.D., an autism researcher at Rush University Medical Center in Chicago.
Having studied autism spectrum disorders for 25 years, Soorya believes a study of this scale will allow researchers to answer exactly what makes up the spectrum and why some people fall on it.
"That's gonna speed up research in a way that we don't have the ability to do now," Soorya said.
Researchers used to know of only one or two genes that played a role in autism. To date, 50 genes have been identified. Researchers believe, by the end of the study, it's possible they will have identified 300 genes or more, which will give them a better understanding of how genetics, biology and environment all play a role.
"The whole thing is going to make it easier for somebody else because the day-to-day grind is not an easy one," Andrea Tarasewicz said.
SPARK researchers are still looking for more people with autism and their families to sign up for the study. You can even do it online and receive a free sample collection kit that you can mail in. Those who participate will have access to care and support groups where they can share information and learn about any new developments researchers make along the way. You can go to sparkforautism.org for more information.