Parents Push for a Wider Spectrum of Autism Research

Parents Push for a Wider Spectrum of Autism ResearchMany parents of children with autism have often been ahead of his doctors and caregivers in coming up with new ways to help their children.

Science and medicine coming around to parents’ view of the condition, and a more nuanced outlook is slowly emerging: Autism is not just an issue with the brain.

Many people with autism are extremely unwell, with physical symptoms ranging from sleep disorders to seizures, energy and immune issues to digestive troubles. Parents have long observed that treating those symptoms can noticeably improve the lives of children with autism, even if doesn’t cure them.

“There’s a whole slew of other symptoms,’’ besides the communication challenges, social impairments, and repetitive behaviors that are the core, defining traits of autism, said Dr. Gary W. Goldstein, president and chief executive officer of the Kennedy Krieger Institute, a Baltimore research institute that focuses on disorders of the brain, spinal cord, and musculoskeletal system. “A fair percentage have gastrointestinal problems, at least when they’re young, that may even outweigh the autism.’’

Treating these physical symptoms might also improve core traits of autism, said Pat Levitt, director of the Zilkha Neurogenetic Institute at the University of Southern California, where those studies are just beginning to examine this question.

Every child with autism is different, Goldstein, Levitt, and others said, and so every treatment plan has to be. Andrew W. Zimmerman, director of clinical trials at the Massachusetts General Hospital’s Lurie Center for Autism, said he thinks researchers are just starting to distinguish among different types of autism, which should eventually suggest different treatments.

Spotting autism early and using Applied Behavior Analysis, a method of teaching missing social and behavioral skills, can be extremely effective, specialists said. Now that the range of autistic behaviors is better understood, Goldstein said 90 percent of children on the spectrum can be diagnosed by age 2.

Goldstein, of the Krieger Institute, said that although a cure is still a long way off, he’s never been more optimistic about the direction of autism care and research. The field, which used to understand little about the condition and not do much beyond make people comfortable, now attracts some of the best and brightest researchers and doctors searching for fundamental causes and treatments.

Harvard neurologist Karen Weintraub firmly believes that autism involves the whole body, “I have come to believe that just as autism is not simply a genetics problem, it is not simply a brain problem, either. As a physician, I’ve seen so many autistic children with similar medical problems that I can’t believe it’s just a coincidence. And we know through thousands of scientific papers and an ocean of clinical experience that the health of the body can affect the function of the brain.”

Weintraub adds, “At this point, I think there is enough evidence to say that while autism certainly involves the brain, it is really a problem of the whole body, including the brain, from molecules to cells, from organs to metabolism, from immune to digestive systems.”

Goldstein credits parents for having gotten scientists’ attention, helping to bring about a steady stream of research, including a provocative parent-funded study published last week in the journal Nature showing that bone marrow transplantation in mice can dramatically improve symptoms of Rett syndrome, a genetic condition that often causes autism.