Making the Hospital Accessible for Individuals with Autism

The growing number of patients with autism spectrum disorder (ASD) prompted Massachusetts General Hospital to initiate the Autism Care Collaborative (ACC). With the support of the Ruderman Family Foundation, the ACC team set forth to build awareness of the needs of people with autism.

“For a person with ASD the hospital experience can be overwhelming. 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.

“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 co-director of the ACC. In the three years since its inception, Dr. Greenspan says, “the ACC has created a series of training videos for clinical, service and administrative staff; developed protocols to facilitate the movement of patients throughout the hospital; designed guidelines for admission and care; and created the autism care questionnaire.”

To facilitate implementation, ongoing training, and direct support for patients and families, the ACC team also recommended the creation of a new hospital-based navigator position. Earlier this year, Karen Turner, OTR/L, stepped into this new role. An occupational therapist by training, a veteran Mass General clinician, and a systems thinker, Karen is focused on building capacity at Mass General and beyond. As she works directly with patients and families to improve their healthcare experience, Karen is developing and refining systems and supports, and collecting data with an eye toward the broad dissemination of best practices for the care of individuals with autism in a hospital setting.

Karen is already making a difference for patients and their families. Recently, she was deployed to help colleagues in the intensive care unit when a nonverbal 25-year-old man with ASD was admitted. She met with the family, and created a care plan to guide his clinical team as they worked to address the urgent medical issues that brought him to Mass General. In anticipation of his release, Karen worked closely with caregivers to ensure that resources were in place for his home care.

Julie O’Brien, Lurie Center Family Support Clinician, said “I work closely with our families on a daily basis and the difference that Karen has already made when one of our adult patients like this is hospitalized is huge. The combination of her clinical expertise, knowledge of hospital systems – and empathic ‘in the trenches’ involvement with families – changes the entire hospital experience.”