Autism study aims to collect DNA samples from 50,000 people

With massive autism study, researches hope to answer what makes up spectrum

HOUSTON – 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. They believe 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 his DNA, believed to be a valuable piece of the autism puzzle.

“Any information they can get from this that will help him or the next person, it’s what we all should be doing,” said Andrea Tarasewicz, the boy's mother.

The Simons Foundation Powering Autism Research for Knowledge, or the SPARK autism study, is collecting medical and behavioral information, along with DNA samples.

Dr. Latha Soorya, an autism researcher at Rush University Medical Center in Chicago, explained the goal.

“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," Soorya said. "And we need all of these people in this massive database."

Having studied autism spectrum disorders for 25 years, Soorya said 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. They’re hopeful it will give them a better understanding of how genetics, biology and environment all factor in.

"The whole thing is going to make it easier for somebody else, because the day-to-day grind is not an easy one,” Tarasewicz said.

SPARK researchers are still looking for more people with autism and their families to sign up for the study. 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. Visit this website to learn more.

Symptoms of autism

The severity of these symptoms varies greatly, but all people with autism have some symptoms in the areas of:

1) Social interactions and relationships: problems in developing nonverbal communication skills, such as eye-to-eye gazing, facial expressions and body posture.
2) Failure to establish friendships with children the same age.
3) Lack of interest in sharing enjoyment, interests or achievements with other people.
4) Lack of empathy. People with autism may have a hard time understanding other peoples’ emotions such as pain or sorrow.
5) Limited interests in activities or play: an unusual focus on pieces (for instance, rather than focusing on a toy car, the child might focus on the wheels of the car).
6) Delay in, or lack of, learning to talk. As many as 40 percent of people with autism never speak.