Rett syndrome is a rare, severe neurological disorder that affects mostly girls. It's usually discovered in the first two years of life, and a child's diagnosis with Rett syndrome can feel overwhelming. Although there's no cure, early identification and treatment may help girls and families who are affected by Rett syndrome. In the past, it was felt to be part of the Autism Spectrum Disorder. We now know that it is mostly genetically based.
The pace of scientific research is frustratingly slow. Many treatments that seem to make sense -- and that other parents swear by -- haven't been proven effective or safe, ineffective or harmful. Compounding this confusion, any number of charlatans stand ready to offer spurious cures.
"The information was so overwhelming and scary," remembers Debbie Page, whose son Gabe was diagnosed with autism in 2005. "It was a scary time of 'What is right?' 'What is real?' 'What do I need to focus on right now?'"
Paul A. Law, MD, MPH, and Kiely Law, MD, MPH, researchers at the Kennedy Krieger Institute (and parents of Isaac, a child with autism), last year launched the Interactive Autism Network (IAN). It's already enrolled the families of nearly 8,000 children with autism, offering targeted enrollment in research studies, rapid feedback on what is learned, and networking opportunities.
"Quite a number of these children are on more than 30 or 40 treatments at any given time, not including everything else they may have tried and stopped using," Paul Law tells WebMD. "One child is on 56 treatments at one time."
One problem is that as claims proliferate, it's difficult for parents to separate the wheat from the chaff, says autism researcher Susan Hyman, MD, of the Strong Center for Developmental Disabilities at the University of Rochester, N.Y.
"It's back to the future in autism: Everything that anybody has ever tried, from guided imagery to vitamins, is still out there," Hyman tells WebMD. "On the Internet, there is a tremendous explosion of information. But I don't know there is any more capacity to discern medically reviewed data from other data. And physicians are terrible at marketing. Evidence is just not as effective as advertising."
At the heart of the issue is the fact that what most people call "autism" is actually a spectrum of disorders that may or may not turn out to have different causes. That's why experts prefer the term autism spectrum disorder or ASD.
Normally, this includes the specific diagnoses of autistic disorder, Asperger's syndrome, and pervasive developmental disorder-not otherwise specified or PDD-NOS. One thing that complicates autism research is that different autism spectrum disorders may turn out to have different causes, may respond better to different treatments, and, perhaps one day, will have different cures. Today, however, ASD has no known cause, no one-size-fits-all treatment, and no cure.