Kennedy Krieger Institute's Center for Autism and Related Disorders is one of 21 sites across the country helping recruit families like the Wilsons for the largest autism study ever conducted in the U.S.
The Wilsons hope the study will eventually help others in the journey of raising a child with autism.
"One thing, I think for all autism parents, the scariest thing is what happens to my child when I die,” Stephen Wilson said.
It’s the reality he and his wife Lisa face.
"So I think that's what we're trying to figure out. Who is going to take care of Phoenix when we're not around,” says Stephen.
Phoenix, who is six now, was diagnosed with autism around the age of two-and-a-half.
His mom, Lisa, started seeing signs even earlier than that.
"We started seeing the signs right around 18 months," she said.
Stephen says, "He really couldn’t express his needs. He couldn’t tell us what hurts what he wanted, what he needed."
For many parents like the Wilson’s, the road ahead would be challenging.
Every child on the spectrum is different. Phoenix’s biggest challenge was communication.
"I guess you would consider him totally non-verbal or emerging verbal," says Lisa.
But call it a parent’s intuition, Lisa says, she always knew someone was inside.
“He never really had a blank stare. My son looked at me, my son was just in there. I just needed a way to get him out. And really Kennedy Krieger pushed us or helped us to get the communication device and that’s when I knew. Ninety days with having a communications system, he was talking back to us," she said.
The Wilsons say they’ve been fortunate to have Kennedy Krieger Institute nearby, a center focused on pediatric developmental disabilities and disorders, like autism.
To aid in research, Kennedy Krieger Institute's ‘Center for Autism and Related Disorders’ is taking part in a national campaign called "SPARK," bringing together the largest community of people for the same project.
Doctor Ericka Wodka, a Pediatric Neuropsychologist, with the Center for Autism and Related Disorders says, "The SPARK initiative is really trying to better understand from more kids why they have autism and why that's important is autism is on a spectrum."
Dr. Wodka says currently researchers only know what causes autism in a very small proportion of kids who have it.
She says, "There have been genes and DNA differences identified. So a specific, either duplications or deletions in their sequencing that have been linked with the development of autism."
Dr. Wodka continued, “By looking at what causes autism we can better understand what we need to do for the children and their families to really improve their lives.”
Participation is designed to be easy. You can even sign up at home.
Once you’re in, you’ll fill out some medical and family history and receive a small kit.
“What you do is spit and fill it up to the line close the top shake it and send it back off and then you've completely participated,” says Dr. Wodka.
For the Wilson’s, signing up for the study was a no brainer.
Lisa says, “If we can make anybody’s life better any portion of people on the spectrum lives better, it’s well worth participating in the study.”
The goal for the SPARK campaign is to get 50,000 participants, so far they have around 18,000 across the country.
There is no age limit, almost anyone can take part in the study.
There is an upcoming registration event on Aug. 26, hosted by the Center for Autism and Related Disorders at Kenney Krieger Institute. To learn more click here.
