Massachusetts General Hospital creates program to provide specialized medical care for adults with autism

From The Boston Globe:

Massachusetts General Hospital is creating one of the first comprehensive programs in the nation to provide specialized medical care to adults with autism, a group whose numbers are poised to surge as tens of thousands of children diagnosed with the developmental disorder grow up.

The hospital plans to announce Tuesday that it will receive $29 million, the fourth- largest gift in its history, from Nancy Lurie Marks and her family foundation in Wellesley, in part to add a major adult component to its pediatric autism program. The money will also allow the hospital to expand its services for children with autism, who now wait up to a year for an appointment, conduct extensive research, advocate for patients, and train physicians.

Foundation staff and autism specialists said many physicians are hesitant or unsure how to talk to and examine adult autistic patients. Their behavior can include rocking and repeating stock phrases - or not speaking at all - and that can lead to serious gaps in care and an over-reliance on psychiatric medications.

Autism “is treated as a childhood disorder but it’s lifelong,’’ said Clarence Schutt, director of the Wellesley foundation, which is a leading funder of autism research and whose grant to Mass. General is its largest ever.

Many adults with autismcontinue to see their pediatricians well into their 40s, while others go long periods without a physical or dental exam. Still others are misdiagnosed, with doctors missing complications such as sleep apnea or gastrointestinal pain because the patient cannot communicate the problem, doctors and families said.

“I am still struggling to get certain services,’’ said Stefanie Sacks, 43, of Lynnfield. “Once you turn 22 you fall off the face of the earth. Some doctors are afraid to touch me.’’

While Sacks has a regular neurologist at Mass. General, until recently she had trouble finding the right primary care doctor closer to home. One physician spoke to her in “a stern, impatient voice,’’ said her father, Irving Sacks, and she curled up into a ball. Another had never treated a patient with autism, but refused to read the literature the family provided, she said. “I have a great person now,’’ she added.

It is unclear how many adults have autism, said Peter Bell, executive vice president of Autism Speaks, a national advocacy group. Some may never have been diagnosed or been misdiagnosed with mental retardation. However, about 26,000 children a year are being diagnosed with autism or autism-like disorders, a number that began to surge in the 1980s - it’s not known whether the rise is real or reflects better diagnosis. About 150,000 to 300,000 of these children will age into adulthood in the next five to 10 years.

In Massachusetts, the number of school-age children diagnosed with autism nearly doubled in five years, reaching 7,500 in 2007, according to the state Department of Education. Autism and autism-like disorders now affect 1 in every 138 of the state’s children, according to the Nancy Lurie Marks Family Foundation.

A small number of children with autism recover with early therapy, but most do not.

Bell said that while he knows of two autism clinics in the United States that treat adults, nothing “comes close to the kind of plan Mass. General is looking at. This is tremendously exciting, and I hope others will follow.’’

He said Mass. General’s plan reflects a growing realization among advocates and medical specialists that “there’s an onslaught of children that are going to become adults in the next five to 10 years who require lifelong care and support, and that’s what we’re not prepared to handle right now.’’

One of the new center’s primary goals is to train primary care and emergency room physicians and nurses, as well as those who work in surgery, in diagnosing illness in this group of patients and in techniques to improve their interactions.

Dr. Ann Neumeyer, a Mass. General neurologist who will be the medical director of the new Lurie Family Autism Center at the hospital, said pediatricians are used to caring for children who don’t communicate, but this is new territory for most physicians who treat adults. An adult with autism might punch his head with his hands and a doctor will treat him with an antipsychotic medication, she said, when the real problem is reflux. “They might be acting out pain in a nonverbal way,’’ she said.

David Surett, 37, who lives in Framingham, waited a year to get a special breathing machine to treat his sleep apnea, his family said, because specialists apparently did not think he could handle the device due to his disability. His family enlisted his Mass. General neurologist and autism specialist, Dr. Margaret Bauman, to advocate for him. “He does fantastic with the machine,’’ said his mother, Carol Surett.

Marks, part of the family that had a controlling interest in the publisher Harcourt General Inc. and Neiman Marcus, has a close adult relative with autism. She began her foundation in 1977

Her gift to Mass. General will pay for a range of new specialists and programs, including an electronic patient data repository for research, adult neurologists, social workers to help adults find work and housing, and a communication program to evaluate children and adults for devices such as computers that produce speech when a patient types on a keyboard. Bauman, who founded the hospital’s multidisciplinary LADDERS program for children with autism, will become the MGH Distinguished Scholar in Autism, an endowed position, as part of the gift. She said the money will allow the hospital to hire at least 10 more doctors.