Historical Autism study enters fourth year, giving families answers, hope
Some kids with autism and their families are finally getting some answers about their diagnosis. The largest autism study in history -- called "spark" -- is entering its fourth year, and researchers at OHSU are helping to uncover some of the mystery.
Alex Wise may just be Spiderman's biggest fan. The shoes, the mask... he even has some web shooters.
"He loves his superheroes... he loves his legos," says his mom, Megan Wise.
And the five and a half year-old has made huge strides in the last couple of years all because of advanced behavioral therapy for his rare form of Autism called "Baraitser-Winter Syndrome."
"It's night and day - the progress he's made," says Daniel Wise, Alex's father. "It explained the behavior and helps us kind of approach it in a way we could actually help him and help us better deal with the sensory processing issues."
Daniel and Megan Wise got the specific diagnosis for their little guy after joining SPARK - the largest study on Autism in history.
"For every family, finding some answer is really meaningful," says Dr. Brian O'Roak, who leads the OHSU team as part of the national SPARK study.
"We're rapidly making progress on the causes of Autism - in particular the genetic causes," O'Roak says.
Researchers have identified a couple hundred high-risk genes linked to Autism, and they think there are a couple hundred more left to find. Scientists think Autism begins developing when the baby's 20 weeks along in the mother's womb.
"We need to understand how that development is changing so we can understand how individuals with Autism's brain work differently," Dr. O'Roak explains. "So if we can understand how the brains work differently, we'll be able to design targeted interventions."
Interventions that could change so many families lives
"There's absolutely nothing to lose," Megan Wise says. "It helps science it helps other families. We can further research. I think it's a win-win situation."
Especially because their insurance denied the genetic testing repeatedly. SPARK's the only reason they have a diagnosis, which helped them learn about potentially life-saving information.
"We actually did find a small issue with his heart and with his ear," Daniel Wise explains. "So we're going to be able to take care of that... set him up for happiness down the road."
That way, their little superhero can thrive.
All you need is an Autism diagnosis. You fill out information, do a cheek swab, and send it off to a lab. Researchers are especially interested in the trio -- a child, and mom, and dad -- for the genetic portion of the research.
Vist the Spark at OHSU webpage here.