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Teaming up against autism

Children with Autism Spectrum Disorders suffer from a myriad of health issues. Now the University of Minnesota is taking first steps on an initiative to consolidate and streamline care while searching for causes of the disorders.

16-year-old Jack Sullivan and his mother, Caryn Sullivan

Jack Sullivan had just turned 2 when his parents‚ Caryn and Ted‚ began to worry. Jack’s language development stopped after he had learned about 20 words; then it seemed that he was always moving. But when they voiced their concerns‚ they were simply told that children acquire skills at different rates.

One day Caryn and Ted left Jack with his grandparents to make a simple trip to the store. “When we returned‚ Ted’s parents were distraught‚” Caryn recalls. “They said they were calling Jack’s name over and over‚ but he didn’t turn around and respond. They have 7 children and 16 grandchildren‚ and they knew something wasn’t right.”

Now it has been more than 14 years since Jack was diagnosed with autism. During those years‚ the Sullivans have visited more than 40 health-care professionals in several states to address Jack’s many developmental and medical concerns. He has struggled with food sensitivities all of his life‚ as well as with frequent vomiting‚ chronic constipation‚ and trouble falling asleep.

Since Jack’s diagnosis‚ Caryn has devoted much of her life to being his researcher‚ scheduler‚ and advocate. She quit her job as an attorney to devote all of her time to Jack and his three siblings.

So Caryn was eager to help when she met professor of pediatrics Scott Selleck, M.D., Ph.D., earlier this year and learned about the University of Minnesota’s new Autism Spectrum Disorders (ASD) Initiative.

“If I can help people have an easier time dealing with this disorder than we have‚” Caryn says‚ “I’m happy to do it.”

Scott Selleck, M.D., Ph.D., is spearheading the ASD Initiative's basic science research component.

Searching for answers

Through the ASD Initiative‚ a diverse group of University experts—from pediatrics‚ developmental biology‚ genetics‚ neurobehavioral development‚ and clinical services—is coming together to find better ways of treating children with autism and related disorders. Initiative leaders are seeking start-up funding to begin establishing a comprehensive medical care site for children with autism. In the future‚ they envision offering the best evidence-based evaluation and treatment to patients in an environment where research can flourish.

And the need has never been greater. The diagnosis rate for ASDs has skyrocketed in the last several decades—rising from 1 in 2‚500 children in the early 1970s to 1 in 150 children today—making autism the most common developmental disability in the world.

ASDs haven’t received much attention from researchers in the past. In fact‚ clinicians are just now beginning to realize that autism is not a single disorder: it’s a family of related syndromes with different causes and‚ potentially‚ different cures.

Selleck‚ who directs the University’s Developmental Biology Center‚ is spearheading the ASD Initiative’s basic science research component‚ which includes collecting DNA samples from children with ASDs and their siblings. “I think this will eventually lead to earlier diagnosis‚ which is critical for success‚” Selleck says.

Meanwhile‚ associate professor of pediatrics Michael Reiff, M.D., will oversee the Autism Spectrum Disorders Program‚ providing medical care and referrals. And Michael Georgieff, M.D., professor of pediatrics and child psychology and director of the Center for Neurobehavioral Development‚ will help manage the collaboration between scientists‚ physicians‚ and other health-care practitioners.

Their immediate goal is to provide more accessible and more seamless health care for families facing autism spectrum disorders.

“Children with autism often have an array of medical complaints‚” Reiff says. “The clinical part of this program is being established with the expectation that by coordinating care‚ we’ll be able to serve families better.”

In the long term‚ those involved with the ASD Initiative hope to crack autism’s genetic code and halt its rapid growth.

“People with autism are a very eclectic group‚” says Robin Rumsey, Ph.D., L.P., assistant professor of pediatrics and a pediatric neuropsychologist. “We’re going to collect data on how different kids respond to specific therapies and treatments. Then we’ll build a database that looks specifically at outcomes.”

A critical need

For families like the Sullivans‚ the treatment piece is critical. They have been frustrated—and exhausted—by the lack of available care options for Jack.

Three years ago‚ Jack’s younger sister‚ Julia‚ was diagnosed with a rare blood disease that required a bone marrow transplant.

But that was a completely different experience‚ Caryn says.With Jack as her donor‚ Julia received a bone marrow transplant at the University of Minnesota Children’s Hospital‚ Fairview that saved her life.

“I am struck by this irony‚” Caryn says. “Julia was cured of a rare blood disease‚ yet her brother‚ who has autism‚ with a 1 in 150 incidence‚ will likely never be cured. I know that it’s because the autism mystery is as yet unsolved.”

That’s why the Sullivans have become proponents of the University’s ASD Initiative‚ which is still in its early planning stages. “My dream is that researchers at the U will find some answers‚” Caryn says. “My dream is that families who receive an ASD diagnosis will‚ in the foreseeable future‚ be able to take their children to the University and receive comprehensive medical care.

“Having a place like that 14 years ago would have changed our lives.”

What are Autism Spectrum Disorders?

Autism Spectrum Disorders (ASDs) are a set of related developmental disabilities including autism‚ Asperger syndrome‚ and pervasive development disorder “not otherwise specified” (also called PDD-NOS). These disorders cause impairments in social interaction‚ communication‚ sensory processing‚ and behavior.

The cognitive functioning of individuals with ASDs ranges from severely delayed to intellectually gifted. However‚ nearly all of those on the spectrum suffer from deficits in day-to-day functioning.

Children with autism and related disorders also are often afflicted by gastrointestinal‚ neurological‚ and respiratory problems.

Researchers currently don’t know what causes the majority of autism spectrum disorders. A very small percentage of ASD cases have a clear genetic cause or are related to medical conditions such as tuberous sclerosis or Fragile X syndrome.

Source: Centers for Disease Control and Prevention

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