Researcher visits South Dakota for 'largest autism study' attempted

Argus Leader

Jamison and his mom Jessica Fox talk about Jamison's autism and how they work with him as a family in their home Monday, Aug. 7, in Sioux Falls.

Jessica Fox and her family have shared nearly everything with autism researchers in Minnesota, right down to their DNA.

The Sioux Falls family gave up details about their life: Jessica’s pregnancy with her son and how they raised 15-year-old Jamison, who doctors said wouldn’t speak when he was first diagnosed with autism.

All of it goes to an expert in the Twin Cities, in the hope their experience could help other parents and children diagnosed with autism. Jessica hopes her experience can spare other moms some heartache.

►More: South Dakota's mental health spending shortchanges early treatment for kids, critics say

“I lost count of the nights that I spent sitting in front of his door, crying in the hall, because I didn’t know what to do next,” Jessica said.

An autism researcher at the University of Minnesota is in Sioux Falls to meet with health care experts in Sioux Falls and Vermillion this week to discuss her work. She is also hoping to recruit other local families, willing to participate in a massive national study to better understand autism and its causes.

Mackenzie, from left, Jamison, and Samantha listen to their mom Jessica talk about when she was first told Jamison was autistic.

The SPARK study will combine data from 50,000 individuals with autism and their families, said Dr. Suma Jacob, a psychiatrist and associate professor at the Minneapolis-based university.

The university is participating with 20 other sites on a project Jacob called “the largest autism study that’s been attempted in the U.S.”

“We need very large numbers of individuals affected by certain kinds of disorders in order out learn more about it,” Jacob said.

Funded by the Simons Foundation, the main goal of the SPARK study is to improve understanding of autism. Learning more about what causes and contributes to the disorder means gathering large amounts of data, Jacob said.

That’s why she’s hoping to find more families during her visit.

►More: Mental health classes a hard sell for S.D. parents

“We know that when we’re studying complex things that have genetic risk, we need large numbers of individuals to make sense of that data,” Jacob said.

Russ Fox wants to know more about his son’s autism, but he’s also interested in learning more about himself and his family’s DNA.

Before he discovered a knack for math and a passion for accounting, Russ struggled in school. He wonders if he grew up affected by some of the same symptoms affecting his son.

Jamison's dad Russ Fox says he is interested in the genetic part of the autism study because he wonders if he has any traits of autism he might have passed to Jamison.

“When he was diagnosed, the only thing I knew about autism was ‘Rainman,’” Russ said, talking about the Hollywood movie staring Dustin Hoffman.

Genetic testing is key to the research and gaining a better understanding how autism affects children. Autism often runs in the family, but unlike an inherited disorder it isn’t passed by a single gene. Instead, researchers for SPARK have already found at least 70 different genes that can cause autism.

“There’s a broad range of symptoms, so there can be individuals that are functioning very well, but have just some traits,” Suma said.

Jamison has already proved doctors wrong. The chatty teenager is far from nonverbal. He likes talking about shop class and loves doing impressions.

“If our experience helps somebody else down the line,” Jessica said, “then that will have made it all worth it.”

Jamison Fox was diagnosed with autism at a young age. His mom Jessica was told he may not be verbal. Jamison surpassed what doctors predicted for his life.

LEARN MORE ABOUT THE RESEARCH

Parents who are interested in learning more about SPARK, or want to join, should visit the research project's website at www.sparkforautism.org/uminnesota.