Courtney McClear has autism and, for the first time, her relatives believe they can do something to find out why.
The McClears plan to sign up Saturday for a nationwide study of the genetics of autism, a program called SPARK, that aims to collect DNA from 50,000 people with the condition and their relatives to give researchers an influx of new data.
How to join SPARK studyWhat: People with autism and their parents or legal guardians and up to one sibling without autism who is 18 or younger can participate in the SPARK study, which stands for Simons Foundation Powering Autism Research for Knowledge, by signing up online or in person and submitting a DNA sample.
When and where: DNA collection events from 10 a.m. to 1 p.m. Saturday at Right Fit, 7101 S. Adams St., Unit 7, Willowbrook; or 2 to 5 p.m. at Turning Pointe Autism Foundation, 1500 W. Ogden Ave., Naperville
Details: Registration is recommended to attend a DNA collection event. To register, contact Katy Heerwagen at the Autism Assessment, Research, Treatment and Services Center at Rush University Medical Center in Chicago at (312) 563-2765 or Kathryn_A_Heerwagen@rush.edu. To sign up online, visit https://sparkforautism.org/?code=rush
Courtney, 17, along with her mother, Theresa McClear, and her 14-year-old brother, JP, each will submit a saliva sample or cheek swab to help researchers still searching for a definitive answer on the factors that lead to autism.
"We're excited about this research study because every doctor we've gone to, we've asked what causes autism and no one can answer," Theresa McClear said.
With DNA collection events scheduled Saturday in Naperville and Willowbrook, other suburban families of children or adults on the autism spectrum can participate, too. Each family can enroll the individual with autism, his or her mother and/or father, and up to one sibling 18 or younger who doesn't have autism.
Joining the study, which aims to finish gathering its 50,000 participants nationwide during the next two years, may help solve the mystery of what creates the social and behavioral abnormalities of the disorder, said Katy Heerwagen, research coordinator for the SPARK study at the Autism Assessment, Research, Treatment and Services Center at Rush University Medical Center in Chicago.
"We know there are some genetic components of autism that are passed on from one generation to the next," Heerwagen said. "We also know there are genetic mutations or genetic changes that happen in the child unrelated to the parents or relatives on either side."
The SPARK study will give researchers fresh data to study such genetic mutations and other links that could determine what causes autism.
As a parent researching her child's diagnosis, McClear said possible explanations have run the gamut: Is autism genetic? Does it come from "something you wash your hair with?" Do vaccines cause autism, as some have continued to believe despite mounting scientific evidence to the contrary? Or is it something in the environment?
McClear said it's important for parents to get a conclusive answer so they'll know how to act and what to avoid to prevent autism in future generations.
The answer affects siblings, too. Courtney's 12-year-old sister McKenzie, for example, is concerned about the genetic risk of autism and says she plans to adopt children instead of having her own.
Finding the cause matters to more people now than ever, because the number of children diagnosed on the spectrum continues to rise.
Some estimates, including the 2016 Autism and Developmental Disabilities Monitoring report by the Centers for Disease Control, say an autism spectrum disorder has been identified in 1 in 68 children in the U.S. The prevalence has increased from the 1980s, when it was 1 in 10,000, through the 1990s, when it became 1 in 1,000, to a 2012 estimate of 1 in every 88 kids, according to the Autism Science Foundation.
Finding out the why behind that trend is where the SPARK study comes in. Started about a year ago, the study, which stands for Simons Foundation Powering Autism Research for Knowledge, aims to speed the pace of autism research by inviting the entire autism community to participate, even families in which the person with autism was adopted or families with parents who have divorced.
Heerwagen said the study can be completed online from anywhere in the country. Families sign up, provide their address and then receive a DNA collection kit in the mail to submit a cheek swab or saliva sample.
Suburban families also can attend one of the two community DNA collection events this weekend in the Western suburbs -- the first outreach events the Rush autism center is hosting to promote study participation.
At the events, families can get help collecting a DNA sample from their relative who has autism, as some adults and children with the disorder -- including Courtney -- lack the motor skills in their mouths to easily spit or swab their cheek on their own.
Staff members from the Rush autism center will be on hand from 10 a.m. to 1 p.m. Saturday at Right Fit, 7101 S. Adams St., Unit 7, Willowbrook, and from 2 to 5 p.m. at Turning Pointe Autism Foundation, 1500 W. Ogden Ave., Naperville, to help with registration and DNA sample collection.
The study so far has enrolled 37,545 people across the country.
"If we want to answer the questions that we still have about the genetic components of autism," Heerwagen says, "we need a large number of people and a lot of information."