Exploring autism's secrets: Duluth family enrolls in largest ever autism research project
Duluth News-Tribune - 9/18/2018
Sept. 18--When Steve and Jeannine Morgan heard about the SPARK for Autism study, the timing wasn't the best.
It was December 2016 and the couple, who live in the Woodland neighborhood with sons Dylan and Henry (now 6 and 2), had their hands full. Dylan had been diagnosed with autism spectrum disorder six months earlier. They'd already enrolled him in a clinical study at Duke University that would prove to be arduous.
On Halloween, Jeannine had been diagnosed with lung cancer. The prognosis was concerning. She was living with the effects of chemotherapy and radiation.
"And I went, 'Great, another thing,'" Jeannine recalled.
But the Morgans looked at the study's purpose ("to speed up research and advance our understanding of autism to help improve lives") and what would be required of them (a relatively simple process).
They decided it was doable, and worthwhile. "It's just kind of being in the loop, knowing that we are part of helping them get more information," Jeannine said.
They signed up, and now they are among 13,266 families (as of last week) enrolled nationwide in a massive research project with sites at 25 medical schools and autism research centers.
The hope is to get more of a handle on a vexing lifetime disorder.
"We don't know very much (about autism)," explained Dr. Suma Jacob, a physician researcher at one of those sites. Her lab at the University of Minnesota focuses on neurodevelopmental disorders such as autism.
"Some individuals have intellectual disabilities; others don't," Jacob said. "Some individuals don't speak at all; others do. So the range of functioning is so broad. That makes it complex even at a clinical level."
Understanding why it happens is just as complex, Jacob said. Not long ago, it was hoped that it would be found that a single gene or a handful of genes were responsible for the disorder. "In the last decade or so, it has become very clear that there may be hundreds of genes involved," she said. "Since it's a complex disorder with many, many genes involved ... we're discovering and figuring out over time you need lots of people in order to make these discoveries."
That's why the Simons Foundation, which funds scientific research, launched SPARK (an acronym for "Simons Foundation Powering Autism Research for Knowledge").
The launch was inauspicious, at least from a Minnesota perspective, Jacob said. The date was April 21, 2016 -- the day Prince died. A media event introducing the project in Minnesota quickly fizzled, she said.
The long-term study is the largest ever conducted on autism, Jacob said, but researchers want it to get larger. The goal is for 50,000 families to participate. Jacob said the project is well known in the Twin Cities, but less so in Greater Minnesota. That's why Natasha Lillie, the study's coordinator in Minnesota, reached out to the News Tribune. She made the connection to the Morgans. Believing in the project's worth, they were willing to share their story.
'A happy kid'
Dylan, the star of the story, was present for an interview in the downstairs family room of the Morgans' home, along with a box full of Legos, toy sharks and toy dinosaurs. Along with Steve and Jeannine, a reporter and a photographer, the family's two cats also participated. Bruce, the family's sociable goldendoodle dog, wasn't there but dearly wanted to be.
Dylan belied any image of autistic children as withdrawn and antisocial. He eagerly demonstrated the chomping mouth of one of the toy sharks to the guests.
"What dinosaur is that?" his mother asked as he held another toy.
"A pachycephalosaurus," Dylan responded, as if that were the most known fact imaginable.
"He's a happy kid," Steve said, explaining their son's default mood.
But his parents had prepared Dylan for this visit, Jeannine said. New situations, noises and bright lights can be traumatic. The sounds of automatic flushing toilets and hand dryers in a public restroom will have him covering his ears.
The signs that something might be amiss showed themselves when Dylan was about 2, Jeannine said. But he wasn't officially diagnosed as level one, the mildest level on the autism spectrum disorder, until June 2016. The Morgans followed recommendations, placing Dylan in speech therapy, physical therapy and occupational therapy.
At the end of that October, Jeannine received the cancer diagnosis, and soon after, they agreed to the Duke University clinical trial. The next September, the Morgans brought Dylan to Duke -- four months after Jeannine underwent an open lobectomy, the removal of one lobe of her right lung. (As of her last scan in August, there's no evidence of the cancer in her, she said.)
That first phase of the clinical trial -- designed to determine the effect of cellular therapy on autistic children -- required three days. At times, Dylan had to be sedated; he had to undergo diagnostic tests, including an MRI. They returned at the end of March of this year and will make one more trip at the end of this month.
By contrast, participation in the SPARK study is simple. A kit came in the mail, and all four of the Morgans provided a sample of saliva. Then they mailed the samples back to the U of M. The hardest part, Jeannine said, was getting enough saliva out of Henry.
That's not atypical, from what Jacob said.
"Sometimes spitting and actually collecting the spit is more challenging than they expect," she said. "They can call our site, and they can talk them through it."
The researchers are particularly interested in families like the Morgans, with both biological parents, the individual with autism and one sibling who does not have autism, Lillie said. But that's not required to join the study, and even people who are adopted and have autism can join.
The Morgans' participation in the research is largely altruistic. Data suggest autism is becoming more common, Jeannine said. The prevalence has climbed from 1 in 150 children in 2000 to 1 in 59 now (based on 2014 data), according to the U.S. Centers for Disease Control and Prevention.
They want to be part of helping researchers find answers about autism, the couple said.
But participation also gives families access to the latest findings on the disorder. "You'll continue to be part of the knowledge as it grows over years," Jacob said.
"I want Minnesota to have these opportunities," she said. "We are excited that it's available, and we want families to know about it."
Meanwhile, the Morgans are doing everything they can to help Dylan make the most of his potential. He's in first grade now, after completing a kindergarten year that had its challenges, they said.
"Our goal is not to let his autism diagnosis fully define him," Jeannine said. "We want him to show us what he can tolerate, what he enjoys. We want to give him those experiences."
To learn more
Those interested in signing up for SPARK or getting more information can call (612) 624-0116 or email firstname.lastname@example.org.
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