Wednesday, June 3, 2009

Autism: Not just a child's disorder

When you think of someone with autism, who comes to mind: a child or an adult? The answer should be both, but most people consider this a disorder that affects children and disappears upon entering into adulthood.

Margaret Bauman, MD, founder of MassGeneral Hospital for Children’s Lurie Center for Autism – a multidisciplinary center providing expertise in neurology, developmental pediatrics, gastroenterology and psychiatry/psychopharmacology for children with autism – emphasizes the growing need for services for this aging population.

“The rate for autism is one in 150,” she says. “Clearly this is a disorder that affects a significant number of people, and we need to start thinking about how to address this population.”

The Lurie Center has been in existence since 1981. Many of its first patients, who were in elementary school at the time, are now in their 20s and 30s. Their families often try to help them transition into an adult medical practice by finding primary care physicians, but their searches are usually unsuccessful. Most adult PCPs have not been trained to deal with the disorder, nor do they have the extra time it takes to consult with these patients.

“A lot of the kids we saw originally are not kids anymore, but they stayed with us because there’s really no other place to go,” says Bauman.

Planning for the autistic adult population

Bauman stresses that medical professionals and institutions need to start seriously planning for the growing autistic adult population, as it is inappropriate to hand adults over to pediatricians. She recounts a situation where a 35-year-old autistic man who required a specific medical procedure came into a hospital and became upset, lashing out at staff. The medical staff was not trained in dealing with autistic patients and did not know how to handle this episode. Their protocol only exacerbated the situation and they ended up having to call pediatrics.

“This kind of situation demonstrates the lack of resources for adults with autism,” says Bauman. “We should be prepared for all autistic patients, regardless of their medical situation and regardless of their age.”

Autistic patients have special and complex medical needs. Many of them have gastroenterological problems that can be addressed when they’re children but need to be monitored as they grow into adults. Bauman said that The Lurie Center is adjusting to this growing population by recruiting two adult neurologists and will recruit an internist this summer. She said this is only the first step in their plan to further expand its adult services.

“Many of the people who came to The Lurie Center as children have gone to college, gotten married or have jobs in community,” says Bauman. “We provided them with tools to help them lead healthy, happy lives, but many of them will need continued therapy for the rest of their lives. It is up to us, as medical professionals, to address this issue now so we can ensure the best possible care for people with autism at any age.”

Learn more about MassGeneral Hospital for Children

Back to Top