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New Research Collaborative to Study Severe Autism

Study will enroll 500 to 1,000 severely affected children and teens through specialized psychiatric hospital units in six states
October 14, 2013

The recently founded Autism and Developmental Disorders Inpatient Research Collaborative has received a $1.2 million grant to study the needs of children and teens with severely disabling forms of autism. The collaborative consists of hospitals in six states with inpatient units that exclusively serve individuals with autism and other developmental disorders.

Most large studies of individuals with autism have focused on verbal and less severely affected individuals, says Principal Investigator Matthew Siegel. Dr. Siegel directs the Developmental Disorders Program at Spring Harbor Hospital, in Westbrooke, Maine. The hospital admits many children with autism for 30 days or longer – often because they’ve become aggressive or self-injurious.

“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,” Dr. Siegel says. The collaborative study seeks to better understand severe forms of autism in order to develop effective treatments. Researchers will take blood samples for genetic analysis and study behavior, including the ability to communicate and regulate emotions. The study is being co-funded by the Simons Foundation and the NLM Family Foundation.

“I’m so hopeful that with this research we can help the kids who need the most help,” Dr. Siegel says. In addition to Spring Harbor Hospital, study sites will include Bradley Hospital, East Providence, R.I.; Hampstead Hospital, Hampstead, N.H.; Sheppard Pratt Hospital, Baltimore; Children's Hospital Colorado, Aurora, Colorado; and Western Psychiatric Institute & Clinics, Pittsburgh.

The Children’s Hospital Colorado and Pittsburgh’s Western Psychiatric Institute & Clinics are also members of the Autism Speaks Autism Treatment Network (AS-ATN).

“Having a network of hospitals specially trained to work with individuals who have extremely challenging behaviors provides us with a unique opportunity to better understand their treatment needs,” says Clara Lajonchere, Autism Speaks’ vice president for clinical programs. “This work wonderfully complements the AS-ATN’s mission to develop evidence-based standards for comprehensive medical care.”

Editor’s note: Last year, Dr. Siegel hosted a live webchat introducing Autism Speaks Challenging Behaviors Tool Kit. Read the full transcript here.