The growing number of patients with autism spectrum disorder has prompted Massachusetts General Hospital to respond with a program to train every employee—from doctors to cafeteria workers—to recognize these patients and learn how to best to approach and care for them throughout the hospital.
The effort, known as the Autism Care Collaborative, is part of a groundbreaking new initiative supported by the Ruderman Family Foundation, based in Israel and Newton, Mass.
For a person with autism spectrum disorder—a range of neurodevelopmental disorders that can cause social impairments, communication difficulties and repetitive patterns of behavior—the hospital experience can be overwhelming with its unfamiliar faces, bright lights and peculiar noises.
Simply being approached by someone who is attempting to put a hospital bracelet on a person’s arm can trigger an extreme reaction, says Ann Neumeyer, MD, medical director of the Lurie Center for Autism at Mass General.
“The fear response of a nonverbal person with autism spectrum disorder might be misinterpreted as aggression especially in a large adolescent,” Dr. Neumeyer says.
Striving for Inclusiveness
Jay Ruderman, president of the Ruderman Family Foundation, knows that every family has been touched by disability of some kind. His is no exception. He watched his late father, Morton Ruderman, a successful businessman from Malden, Mass., gradually become disabled by alpha-1 antitrypsin deficiency. It is a disease that impairs breathing. More recently, a nephew was diagnosed with autism.
The Ruderman Family Foundation is supporting an array of services at Mass General intended to build awareness of the needs of people with autism.
The Ruderman Family Foundation, which has the dual mission of advocating for people with disabilities and broadening Israeli understanding of the American Jewish community, is supporting an array of services at Mass General intended to build awareness of the needs of people with autism. For example, a series of educational videos, created by Mass General’s Knight Nursing Center for Clinical and Professional Development, is already being used to train staff throughout the hospital to work with patients with autism.
“Coming to a hospital, for anyone, is a scary process. It’s intimidating,” Mr. Ruderman says, speaking at his Newton office where posters of his foundation’s many philanthropic projects adorn the walls. “And for someone with a disability like autism, you can multiply that many times.”
Approaching Patients with Autism
“Most doctors, unless they have a family member with autism, have never received training in autism,” explains Dr. Neumeyer. Sometimes, for example, it’s best to talk with the parent about how to best approach a new patient with autism in a way that won’t alarm him or her.
The goal of the Autism Care Collaborative is hospital-wide, says Peter Greenspan, MD, vice chair of the Department of Pediatrics and medical director of MassGeneral Hospital for Children. In the two years since its inception, Dr. Greenspan says, the Autism Care Collaborative has moved forward in four important areas: clinical, educational, administration and communication.
Learning to Navigate the Hospital
For example, clinical staff members on three adult hospital floors are already training intensively to understand the needs of autistic patients as they transition from pediatric to adult care units. Down the line, this effort will expand to the entire hospital.
Parents have created a 48-page picture book showing patients what to expect during typical hospital procedures and tests.
In addition, the collaborative has developed the role of a patient navigator, a person who helps autism patients and their families understand how to make their way around the hospital beyond the pediatric wards. The navigator also supplies general support to patients and families.
The collaborative has created a questionnaire for parents to share information about how hospital staff can best approach and communicate with their individual autistic family member. That information is transferred to the hospital’s electronic records system and can be accessed by clinicians throughout the hospital. Parent members of the collaborative have also written a 48-page picture book showing patients what to expect during typical hospital procedures and tests. The Ruderman Family Foundation’s support has been crucial to these efforts.
Christopher McDougle, MD, director of the Lurie Center for Autism, applauds the Ruderman Family Foundation’s support for raising awareness about people with autism across the entire hospital. “People with autism are often misunderstood and undervalued,” Dr. McDougle says. “The Autism Care Collaborative helps bring them into the mainstream of the Mass General community.”
A Model for Other Disabilities
Everyone involved hopes the program created by the Autism Care Collaborative can be used as a model for other hospitals and, eventually, as a template for improving the hospital experience of people with other disabilities as well.
That’s an important goal for the Ruderman Family Foundation, whose philanthropic philosophy is to advocate for a more open, accessible society for all people with disability. “Our target is not people with disabilities but general society and making sure people in society are more aware and inclusive of people with disabilities,” Mr. Ruderman explains.
“We are truly grateful to the Ruderman Family Foundation for their support on this important project,” Dr. Neumeyer says,”and also to the Mass General Hospital administration which recognized this need, and to my hospital colleagues who are devoting countless hours to ensure the success of our efforts.” She emphasizes that additional philanthropic support is crucial, because most of this work is not covered by insurance.
For more information about how you can support the Autism Care Collaborative, please contact us.