UF launches new autism program

It’s memorable when children begin to recognize letters, but it can be a milestone when an autistic child learns some of the alphabet.

So says Marilyn Valentin, whose 7-year-old son recently entered the University of Florida’s Autism Program.

“The challenge is to get him to concentrate, to pay attention at school and to learn to do simple things,” Valentin said. “He’s all over the place, all the time.”

Autism is not a learning disorder, according to Mark H. Lewis, Ph.D., a psychiatry researcher in UF’s College of Medicine, but the defining features of autism – social and communication deficits as well as restricted or repetitive patterns of behavior – make learning more difficult.

More common than once thought, autism affects two to five out of every 10,000 children, with signs beginning before age 3. Symptoms usually occur in combination and with varying degrees of severity, so one size treatment does not fit all, according to Jodi Star, M.D., who directs the new Autism Program at UF.

The program channels the wide-ranging efforts of researchers and clinicians from throughout the university into a new, multidisciplinary approach to autism. Other autism efforts, local school systems and clinicians are encouraged to become involved as well. Outreach efforts peak on Jan. 28 with the Department of Psychiatry’s autism conference at the university.

The program’s multi-faceted approach is designed to enrich the lives of families affected by autism. “The value for kids with autism and their families is they can come to us and get services that are adjusted to their areas of need or disability,” said Regina Bussing, M.D., chief of child and adolescent psychiatry in the College of Medicine. “For example, a child may need genetics assessment, psychological testing, speech therapy and medical management. Based on a thorough multidisciplinary team assessment, we can provide a range of interventions.”

Currently, the UF autism team – which includes child psychiatrists, behavioral analysts, speech and language pathologists, nurses, health psychologists and pediatricians – is finalizing a comprehensive initial assessment questionnaire that will enable parents to easily provide patient information before their first appointment, a process utilized at centers of excellence around the country, said Star.

It is not uncommon for children with autism to have had multiple prior evaluations, in areas such as speech, occupational therapy and psychology. Gathering this information prior to assessment can assist with diagnosis and expedite treatment.

“This allows the health-care team to get a sense of a child’s needs, problems and past assessments so we don’t start from scratch,” Star said.

“We have a medical director in Dr. Star who is both a board-certified pediatrician and a child psychiatrist,” Bussing said. “That’s an important combination, because the needs of children with autism are unique. These children do not communicate or present symptoms in a conventional way. Sometimes pediatricians become stymied and need to consult with a child psychiatrist. We are fortunate to have a clinic director who combines that expertise.”

Bussing said UF professionals in association with UF’s McKnight Brain Institute have formed a collaborative group of diverse experts to tackle autism not only in the clinic, but also in the research laboratory, where Lewis has directed grant-writing efforts. Lewis’s research effort is focused on repetitive behavior, such as rocking movements and hand flapping. “Sometimes the behavior can even be self-injurious, such as head-banging,” he added.

The program also has plans to expand into animal research areas.

“With respect to animal studies, the extent to which we can successfully model repetitive behaviors gives us a tremendous advantage in our ability to understand neurobiological mechanisms,” Lewis said. “It will help us develop more effective treatments.”

Beyond the clinics and laboratories, UF reaches out through the Center for Autism and Related Disabilities (CARD), with offices in Gainesville and Jacksonville. CARD works with families, caregivers and professionals to optimize the potential of people with autism and related disabilities. It augments advocacy and education efforts, Bussing said.

CARD professionals are invaluable, Valentin said.

“They ask about behaviors you need help with, and they help you set up your house,” Valentin said. “They provide a lot of good advice.”

As for her son, Valentin is optimistic that his condition will continue to improve. His difficulties in sleeping, which Star said are typical of autistic children, have been reduced in response to medication.

“He wouldn’t sleep at all on some days. Autistic children never seem to get tired and, when they do go to sleep, it’s in the morning when you’re supposed to be awake,” Star said. “For now, we would love for him to grow up and become more able to stay in one place, at least for 10 minutes.”

Meanwhile, faculty leaders of the Autism Program are preparing to host the fourth annual Autism Conference at UF’s McKnight Brain Institute on Jan. 28. Initially convened to improve collaboration between the various UF autism initiatives, the conference has grown in scope and attendance from year to year, Bussing said. The conference this year will also feature an internationally renowned expert on autism, Isabelle Rapin, M.D., professor of neurology and pediatrics at Einstein Medical College in New York, whose lecture on contemporary issues in autism etiology and treatment will be open to interested professionals and the public. Call (352) 392-8373 for more information about this lecture.