During his first visit to the doctor’s office, Bobby fled from the waiting room, ran outside the building and hid in the parking lot.
During his second visit, the 22-year-old’s anxiety was just as palpable. Bobby began jumping in place, repeating dialogue from his favorite TV show and complaining that the office’s bright, buzzing fluorescent lights hurt his eyes and ears. Because he refused to allow any care providers to touch his body, his initial physical examination again had to be postponed.
Bobby — who is diagnosed with Pervasive Developmental Disorder-Not Otherwise Specified, a subtype of autism that has since been folded under the umbrella diagnosis of autism spectrum disorder — is one example of how seemingly straightforward primary care medical visits can pose complex and challenging experiences for adults with ASD.
What helps and hurts the office experience
“Adults with autism spectrum disorder face unique challenges to receiving optimal medical care due to a number of factors,” said Leah Stein Duker, assistant professor of research at the USC Chan Division of Occupational Science and Occupational Therapy.
These factors include difficulties with communication, challenges making health care decisions, overstimulation within the clinic environment and a lack of ASD-specific training for providers, she said. Some physicians interviewed in a 2013 survey, for example, erroneously considered autism as only a childhood disorder.
There is limited research detailing the specific needs of adults with ASD during primary care health encounters.
Leah Stein Duker
“There is limited research detailing the specific needs of adults with ASD during primary care health encounters, and even fewer evidence-based strategies to facilitate these experiences,” Duker said. “They are often fraught with serious difficulties for the patients, their caregivers and their practitioners — this means that the quality of their medical care is not what it could be or what it should be.”
Awareness and acceptance
April is National Autism Awareness Month, an annual public service campaign for increasing awareness, acceptance and celebration of people on the autism spectrum. But unfortunately, there are no professional standards or agreed-upon best practices for primary care encounters with autistic adults. This is a population that will only continue growing as the wave of children who were diagnosed with autism beginning in the early 1990s — and which grew exponentially throughout the ’90s and ’00s — comes of age.
Duker hopes to change that with a new research grant she recently received from the American Occupational Therapy Foundation. The grant will fund Duker’s study, “Environmental Barriers and Facilitators for Adults With ASD During Primary Care Health Encounters,” in which she and her team will conduct interviews with adults with ASD, their caregivers and their providers to better understand the types of problems they face during primary care. The interviews will form the basis for a preliminary intervention plan that will likely include target strategies such as physician education, caregiver training, tips for promoting patient–provider communication and decision-making strategies for patients and caregivers.
“My objective is to improve health care services for adults with ASD, which can ultimately enhance both short- and long-term outcomes for this vulnerable and underserved population,” Duker said.
What about Bobby?
At a presentation during last month’s annual conference of the American Occupational Therapy Association, Duker and her colleague Beth Pfeiffer, associate professor at Temple University’s College of Public Health, highlighted Bobby’s case to demonstrate how occupational therapy successfully helped Bobby’s primary care providers improve his overall care access and experience.
His occupational therapist and the medical office nursing staff developed a verbal and visual “picture schedule” for each phase of subsequent office visits in order to help Bobby know what to expect. To reduce his anxiety, Bobby’s family reviewed the picture schedule and did role-playing with him during the week prior to each visit.
The occupational therapist worked with office staff to section off a “quiet area” of the waiting room with dimmed lighting, a sound machine to muffle office noises and walls painted a soothing light blue color.
In-service training was given to the physicians and staff about strategies to support successful visits, including the value of visual cues and alternative methods of communication. The office also established a scheduling policy to ensure that patients with developmental and sensory needs like Bobby can book appointments when the clinic is not as busy, giving him extra time to complete exams and work with families and caregivers.
These are seemingly simple tips that can go a long way toward improving the total primary care experience for adults with ASD.
“Truly patient-centered care is respectful and responsive to individual patients, whatever their specific preferences and needs might be,” Duker said. “I see a future in which our medical system delivers exactly that.”
More stories about: Autism