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National Network To Focus On Severe Autism


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A first-of-its-kind research network is forming with an eye toward better understanding autism by studying kids who are most severely affected by the developmental disorder.

Six inpatient psychiatric facilities across the country that specialize in treating individuals with autism and other developmental disorders are coming together to form the new initiative known as the Autism and Developmental Disorders Inpatient Research Collaborative.

While significant resources have been devoted to autism research in recent years, those behind the new effort say large studies have generally failed to include individuals at the severe end of the spectrum.

“There is so much that remains unknown about autism … and those most severely affected by the disorder both deserve our attention and are likely to provide us clues for understanding the core features of autism,” said Matthew Siegel of Spring Harbor Hospital and the Maine Medical Center Research Institute who is working with his colleague Susan Santangelo to spearhead the new project.

The network will be looking to better understand the genetics behind the communication, intellectual and psychiatric components of autism in hopes of developing more individualized treatments for the disorder, organizers said.

In addition to Spring Harbor Hospital in Westbrook, Maine, the network will include Bradley Hospital in East Providence, R.I., Hampstead Hospital in Hampstead, N.H., Sheppard Pratt Hospital in Baltimore, The Children’s Hospital Colorado in Aurora, Colo. and Western Psychiatric Institute & Clinics in Pittsburgh.

The new effort is funded with a two-year $1.2 million grant from the Simons Foundation and the Nancy Lurie Marks Family Foundation. In that time, researchers plan to enroll 500 individuals at the hospitals in their study.

“In the short term, this will raise the standard of care in the participating hospital units and inform best practices for psychiatry units in the U.S. and abroad,” Santangelo said. “Ultimately we intend to make this study the launching point for future autism research that will unlock some of the mystery surrounding this disorder.”

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Comments (5 Responses)

  1. Lynne367 says:

    As the parent of a very severely affected child with autism, I know how underserved this population is. However, this endeavor alarms me. Severely affected people with autism usually have a host of biological problems: GI disease, autoimmune dysfunction, PANDAS, even untreated Lyme disease is not uncommon. All to often undiagnosed GI disease leads to terrible self injurious behavior that is a manifestation of terrible pain.

    This program is entirely psychiatric- the oldest model of autism treatment and the LEAST effective with severely biologically affected autistic children. There are no GIs, no immunologists, no toxicologists at all in this treatment network. It is all about drugs and, tragically, sometimes restraints and ECT.

    Our most vulnerable citizens deserve so much better. NO more ECT and no more restraints. Find out WHY the child is in pain and treat the underlying medical condition, don’t just drug the behavior.

  2. Mary Duehlmeyer says:

    It is about time that any attention is given to children and adults on the more severe end of the spectrum. When over 50% of children and adults have both autism and cognitive issues, it is surprising that the focus has generally been on the higher functioning population. They have been discriminated against by the very people who should be working to support their needs as well. Unfortunately, they will never be what is considered the “poster” children/adults for success. Therefore not as marketable. What happens to them when they age out of school? As a parent of a young man on the spectrum as well as other disabilities, there is nothing out there. No continuum of education services directed by professionals with the knowledge and training he deserves. I continue to advocate for his needs and the needs of others who need ongoing support after 21 or 26.

  3. AK's mom says:

    My son has had severe autism since his mmr shot. My son is turning 9 and this year after some new treatments-coconut oil – fuel for thought product, and more new ones after years on basically the same supplements my son has started to point, waive and say some words. Churchs have been praying for my son a lot this year. Never give up pray and keep searching for what is causing the problems. My son also has had severe gi issues for years. Hbot was the first treatment that helped after years of seeking help as he could not gain any weight. Any treatment for autism must address the GI problems.

  4. AK Mom says:

    We also started speak fish oil this year. Great product. My son is starting to say words now at age 8.

  5. Sarah says:

    From the article: “The network will be looking to better understand the genetics behind the communication, intellectual and psychiatric components of autism in hopes of developing more individualized treatments for the disorder, organizers said.”

    Autism now affects 1 in 88 American children and 1 in 54 American boys. Autism cases have increased about 15-20% every five years. Environmental factors (toxins) signficant role in the dramatic increase. Why are environmental toxins not being seriously looked at? Why is envrionmental factors being pushed aside with so much focus on genetics. There is no way autism increase is soley genetic. Toxic exposures in the child’s environment have to be part of the conversation. Genetics alone does not cause autism. Any national focus group on autism needs to be honest, look at this in the context of environmental exposure and include experts who have a background in toxicology not just psychiatrists.

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