Throughout the course of her high school career, Alyssa Hiles has not only kept autism from controlling her life, but has let individuals throughout the community know how to push forward with their own lives.
On Wednesday, Hiles continued her mission of giving back to those who have the disorder as Hiles, along with several members of the staff at Cincinnati Children’s Hospital, held an all-day event at the SOMC Life Center for interested families who held a desire to enroll for, or who wanted more information about, SPARK testing.
For Hiles, it’s simply another method that can help individuals understand the root of their own bouts with the disorder.
“It’s awesome,” Hiles said. “We’re just trying to spread more awareness about autism for the citizens of Scioto County and the entire Southern Ohio area. It’s the best because it’s more awareness for individuals who need it, and I get to bring SPARK into this movement.”
For Dr. Craig Erickson, who is an M.D. at Cincinnati Children’s, they’re more than happy to assist Hiles in her efforts to increase the awareness of autism research.
“It’s tremendous,” Erickson said. “We’re participating in SPARK because we want to bring these opportunities that are best practiced in autism to as broad of an audience and a population as we can. I really feel even better when we get out to the rural and smaller communities that don’t have ready access to large medical centers for opportunities like this. We’re super excited about it, and we’re really glad that there was interest in the Portsmouth area to make this happen.”
SPARK (Simons Foundation Powering Autism Research for Knowledge), has been designed for the sole purpose of building a research community where tens of thousands of individuals with autism — along with their families — can understand autism in a greater light.
Not only does this research go toward individuals in need, it also comes as no charge to the individuals who pursue the research, as the program is completely funded by the Simons Foundation Autism Research Initiative (SFARI).
The results of the research, according to the SPARK for Autism website, will go completely towards new autism research that will further advance the understanding of the disorder. Approximately 20,000 families are already enrolled in the program, which makes it the largest autism project in the country, and Cincinnati Children’s, on their own, have assisted “around 1,000 individuals who have been diagnosed with autism through the enrollment process,” according to Stephanie Booker, who is a research coordinator at the facility.
“It’s a national effort,” Erickson said. “We need to get broad participation to really harness new discoveries, because some genetic variants and other features of autism may only impact a small number of individuals. That’s why it takes 50 states all participating together to get the numbers necessary to advance this research. It really is a concerted, national effort to get the best data available to develop new discoveries related to autism that can lead to good treatments.”
All a person needs to do in order to get involved is to provide diagnostic history, medical history, and a saliva sample — which can all be done from the seat of one’s own home.
“The saliva is used for exome sequencing, which is top of the line genetic analysis,” Booker said. “Families do have the option to be notified if autism is found in their samples. Today, we are here in Portsmouth to assist families with the enrollment process and the saliva collecting process. That’s what we do across the board, so even if we’re not here in Portsmouth, we’re happy to assist from a distance by providing tips and tricks. Families can enroll online from their own home, have the kits shipped to them, and contact us for help if anybody can’t spit or has a difficulty spitting.”
“People can do the saliva testing at their homes, or they can come in and do it at Cincinnati Children’s,” Hiles added. “They’re also available if they need to ask questions. I just want to help advance the research study and give people an avenue to help understand the causes of autism and why they might have it. It’s about raising awareness to show how everyone is different. The research will help with knowing what makes up the differences.”
For Hiles, who has raised $6,926 to the Autism Project of Southern Ohio and presented the SPARK program to APSO members back in May, it’s all about understanding where everyone comes from.
“I have a friend who has Crohn’s Disease, and I learn everything from her,” Hiles said. “There’s a girl that I know who has diabetes. I learn everything from her. Everybody is different, but special and unique in their own way. That’s what I try to tell people.”
And that’s what makes Hiles’ mindset so special, according to Erickson.
“We think that it’s incredible that Alyssa is forwarding awareness in an effort to help others understand autism,” Erickson said. “To have advocacy to move forward research and good care in autism is big. SPARK is one element of that, and it’s incredible to see. As a researcher and a physician in the field, it’s wonderful to know that there are motivated families out there who appreciate these opportunities and want to help spread the availability. It makes it that much easier to do your work every day.”
Reach Kevin Colley at (740) 353-3101 ext. 1930 OR on Twitter @ColleyKevin7