Constable: How saliva samples can help nationwide autism research
No one's sure what causes it, and no one knows how to cure it. But lots of people living with autism can help researchers across the nation Saturday at Giant Steps, a therapeutic school in Lisle for students diagnosed with autism.
“We all have to be part of this,” says Andrea Tarasewicz, whose Lisle family already has donated their DNA samples to the cause. Tarasewicz, her husband Bob, and their kids Jacob, Abby, Max and Sam hope the research can help Ben, 16, the youngest member of the family and the one on the autism spectrum. But they also note the research could help people who are just starting down the rough road of autism.
“It's good if I can hook you up and make your road a little less bumpy,” Andrea Tarasewicz says. “This is a hard, hard road.”
When Ben, who now attends school at Giant Steps, was a baby, he wouldn't crawl from carpet to a wood floor, couldn't tolerate adults with facial hair and threw fits in his highchair. As a teen, he sometimes throws his glasses out of moving cars, swears at inopportune times or throws fits in public.
“I want for him the same thing I want for my other kids,” his mom says. “Happiness, health and independence.”
The research goal to collect 50,000 DNA samples sits at just under 10,000, says Holly Lechniak, a licensed clinical social worker and outreach director for the Autism Assessment, Research, Treatment & Services Center at Rush Medical Center. More than 20 leading medical schools and autism research centers around the nation are part of the research effort. Working with the Simons Foundation Powering Autism Research for Knowledge (SPARK), Lechniak will collect medical and behavioral information in addition to the DNA samples.
“I've collected a lot of spit in my day,” Lechniak says. By compiling the DNA of people on the autism spectrum and their parents, researchers can learn more about the genes linked to autism.
“We've identified 90 genes that have been linked to autism,” Lechniak says. “Many researchers believe there may be between 500 and 1,000 genes involved in autism.”
The research is complicated because autism is complicated. Some kids on the autism spectrum do not communicate and need constant care. Others have advanced degrees and careers. Officials believe the causes of autism are just as complicated.
“What we know now is that there is not just one cause of autism,” Lechniak says.
Tarasewicz says some of her relatives also have children with autism, but she also says there must be more to autism than genetics.
“I don't think it's all genetics,” she says. “It's absolutely fascinating to me. It's a little bit of this, a little bit of that.”
The SPARK study wants families. “We can learn the most when we have the individuals and both parents, but they don't have to have both parents to participate,“ Lechniak says. The researchers hope to find “the reasons for the causes of autism, but also, down the line, potential treatments,” she adds.
To register, email Lechniak at SPARK@rush.edu or phone (312) 563-2765. The appointment takes about 20 minutes. Walk-ins are accepted from 9:30 a.m. until 1:30 p.m. Saturday at Giant Steps, 2500 Cabot Drive, Lisle. Participants in this Autism Awareness Month event are eligible for Amazon gift cards of up to $50 if a person with autism and both parents give DNA samples.
“We also can connect families to other studies and other opportunities for research,” Lechniak says.
For teenager Ben Tarasewicz, whose DNA swab video is used to illustrate how simple the process is, the research is personal. In moments when the teen feels like talking, he tells his mom: “It's hard. Sometimes I can't behave right and sometimes I can't talk to people.”
He started therapy before he was diagnosed at age 7, but his mother says the family would have done even more earlier if they knew more about autism. Research could provide some help and even answers. As for now, the main question about autism can't be answered.
“When,” Ben asks his mom, “will it go away?”