The word autism describes a spectrum of conditions usually diagnosed in early childhood and marked by difficulties in communication and social interaction, and sometimes by repetitive behaviors. A lifelong neurological condition, autism affects one in every 49 children in New Jersey. The exact cause remains a mystery.
Children with autism may have problems talking with you, or they may not look you in the eye when you talk to them. They may have to line up their pencils before they can pay attention, or they may say the same sentence again and again to calm themselves down. They may flap their arms to tell you they are happy, or they may hurt themselves to tell you they’re not. Some never learn how to talk. Because people with autism can have very different features or symptoms, healthcare providers think of autism as a “spectrum” disorder.” Asperger’s syndrome is a milder version of the disorder.
The cause of autism is not known, and while there is no cure for the lifelong condition, treatment can help. Treatments include behavior and communication therapies and medicines to control symptoms.
Families benefit from support that goes beyond information about their child’s behavioral and developmental needs. Parents need information about available therapies, dietary concerns, school-related services and resources that many do not even know are available. And they need to understand that behavioral issues are often accompanied by medical problems. For example, children with autism often suffer from gastrointestinal issues such as constipation and heartburn. But because some children with autism are often nonverbal, it is difficult for parents to recognize symptoms that can best be assessed by a gastroenterologist. Access to a multidisciplinary approach to treatment provides patients and their families with a choice of professionals from various medical disciplines, including pediatric neurologists, sleep specialists, pediatric gastroenterologists, speech-language and occupational therapists, physical therapists, geneticists, child psychologists and nursing and family support coordinators.
At Saint Peter’s, for example, the Pediatric Developmental and Behavioral Division at The Children’s Hospital has teamed with Drexel to develop a number of studies to address the needs of children with autism and developmental disabilities. One study looks at the link between autism and pancreatic enzymes, which help with digestion and may play a role in the gastrointestinal problems that occur with some types of autism. Another study, funded by the National Institutes of Health, is looking at genetic markers for certain behavioral disorders to help identify and treat them better. The Children’s Hospital at Saint Peter’s has joined a network of other healthcare institutions, including the Children’s Hospital of Philadelphia, the New Jersey Institute of Disabilities and the Rutgers University Genetics Department and Graduate School of Applied and Professional Psychology. This network provides access to even more clinicians, researchers, families, educators, students and advocacy agencies, all located within a 10-mile radius of each other in Middlesex County.
A family-centered, comprehensive approach ensures that the needs of patients and families are met on the road to solving the puzzle of autism.
Courtesy of Barbie Zimmerman-Bier, M.D., director of the Division of Developmental and Behavioral Pediatrics, at The Children’s Hospital at Saint Peter’s University Hospital, and Genevieve Kumpapley, PharmD., an oncology clinical pharmacist specialist at Saint Peter’s. Both are mothers of children with autism. Dr. Kumapley, who co-founded MyGOAL (My Gateway to Overcoming Autism) with her husband, works as a parent advocate with Dr. Zimmerman-Bier. To find out more about autism and Saint Peter’s Developmental and Behavioral Pediatrics programs, call 732-339-7045 or visit http://www.saintpetershcs.com/autism/
Information about support services, including monthly support group meetings, is available at http://www.mygoalautism.org/, http://www.autismnj.org/, http://www.poac.net/
