Parents of children with autism often lack good treatment options for this still mysterious developmental disability that can be accompanied by myriad medical problems. That is why six leading medical institutions — including the Autism Center at the UW — are joining forces with physicians and parents to form the nonprofit Autism Treatment Network.
Major goals of the network are to develop standards of treatment for people who have autism and to build a national autism database, said Geraldine Dawson, director of the UW’s Autism Center. The database will store information on the range of medical conditions from which people with autism suffer and those treatments that have been tested and have been found to be effective.
In addition to the UW Autism Center, other medical institutions joining the Autism Treatment Network are Massachusetts General Hospital in Boston, Baylor College of Medicine in Houston, and the Cleveland Clinic in Cleveland, as well as individual physicians at Oregon Health & Science University in Portland, Ore., and Columbia University Medical Center in New York. Other partners in the network include the Northwest Autism Foundation and the Cure Autism Now Foundation, a leading funder of autism research.
“There are hundreds of thousands of children and families in the United States struggling with autism,” said Seattle businessman Richard Fade, a co-founder of the Autism Treatment Network. “They face a tremendous challenge. This is especially true with regard to medical issues and access to treatment. There are still large gaps in our overall understanding of the disorder.”
Dawson said the Autism Treatment Network is being modeled after the Cystic Fibrosis Foundation and the Children’s Cancer Network, which have spurred dramatic gains in medical science’s ability to treat those conditions.
“All too often when parents are reeling from getting a diagnosis of autism, they are put in a position of making decisions about treatment with few physicians or centers that can guide them,” she said. “And later on, because many physicians focus on autism solely as a communications and behavior disorder, they fail to recognize medical conditions that are associated with autism. Many children with autism are nonverbal and have trouble expressing them themselves, so they have difficulty explaining their symptoms.”
Dawson noted that gastrointestinal problems, sleep disorders and food allergies are among the medical conditions which may be prevalent in children with autism. According to parents some are being treated successfully for these issues. However, no organization of medical institutions has undertaken careful study and committed to establishing treatment guidelines for care.
Making front-line physicians aware of such information and proven treatments is a primary goal of the new network, and at the UW Autism Center this effort has been given a boost with a $1 million donation by Fade and his wife. This gift will be used to create a fellowship for training young physicians to go out into the community and treat autism. The Fades, who have a family member with autism, made a $5 million donation in 2000 to help found the UW Autism Center.
Autism is the most common developmental disability in the United States, affecting more youngsters than childhood leukemia, diabetes and cancer combined. It affects about one in 166 children according to the Centers for Disease Control and Prevention. Autism is a spectrum of developmental disorders that interfere with a child’s ability to communicate or relate socially with other people. Those afflicted have a restricted range of activities and interests. Some are high functioning, but many children with autism have some form of mental retardation.
“For other developmental disorder, such as Down syndrome, physicians are alerted to the kinds of medical conditions that these children suffer and have guidelines for treating them, but there is nothing like this yet for autism,” said Dawson. “Historically, creation of the Autism Treatment Network will be a very important development in the way we view and provide treatment for children with autism.”
For more information about the UW Autism Center, see http://depts.washington.edu/uwautism/.