On Saturday, pediatrician Paul Carbone opened the second day of Autism Speaks' national conference with insights into how families and doctors can create a better system for delivering family-based care for individuals with autism spectrum disorder (ASD).
“For me, this is a unique opportunity to speak to parents and providers sitting side by side,” Dr. Carbone said before delivering his advice to more than 300 parents, healthcare providers and educators. “Despite everyone’s best intentions, the partnership between parents and providers has been strained,” he explained. “If we can get them working elbow to elbow, things can get better.”
As a pediatrician, Dr. Carbone became actively involved in improving autism care after his son Ben was diagnosed with ASD around eight years ago. Dr. Carbone now works within the University of Utah’s Neurobehavior HOME program, which provides lifelong, comprehensive care for individuals with developmental disabilities. He is also the co-editor of Autism Spectrum Disorders: What Every Parent Needs to Know, published by the American Academy of Pediatrics. (Also available in Spanish, here.)
In his keynote address, Dr. Carbone drew on research and the experiences of families to identify the extraordinary challenges as well as the elements of success for building a lifelong medical home for individuals affected by autism.
“The medical home is not just a place where your child receives care, but a process that emphasizes ‘home’ as the headquarters,” he said. “It’s a place to feel recognized, welcomed and supported,” he added to applause. “It’s an integral part of a larger community-based system of services.”
The goal of this process, he explained, is a resilient family and a transition to adulthood that maintains continuity of care and maximizes meaningful community participation.
Identifying challenges to the parent-provider partnership
Mutual respect between parents and providers is crucial to creating a medical home, Dr. Carbone said. Yet his research has documented how the complexities of autism care – medical, educational and behavioral – can fray this partnership.
Many parents, for example, reported that their primary care physicians lacked expertise in autism and interest in coordinating their child’s multifaceted care. “My wife is the medical home,” Dr. Carbone quoted one father as saying. “She gets referrals and coordinates between physicians, two occupational therapists, two speech-language pathologists, teachers at school, a consultant and a behavioral specialist.”
At the same time, pediatricians in the study reported that they knew they should be coordinating care. But they lacked the time and training to address what they saw as daunting issues. “I do what I can but many times I feel that the family needs so much more,” he quoted one physician as saying.
Alternative therapies, he noted, were an often-cited flashpoint on both sides of the exam table – with parents highly interested and physicians deeply worried about safety and effectiveness.
The good news, Dr. Carbone reported, was that care within a medical home dramatically reduced stress on families and improved both parental understanding of controversial treatments and children’s overall care. Reducing stress on families and other caregivers, he noted, is one of the most important ways to improve a child’s wellbeing.
Building a better system
Dr. Carbone identified several examples of practices that built true medical homes for delivering family-centered autism care.
One was a pediatric group that gave parents a comprehensive plan that outlined all aspects of a child’s autism care. This came with a log that encouraged parents to track their child’s response to each new or changed treatment. The practice introduced autism-friendly “appointment tools” such as social stories. It also provided extra appointment time for children with autism.
Dr. Carbone described his own participation in a learning collaborative that promoted early autism detection and referral among 32 primary care practices.
“In trying to improve patient-care systems, one of the most important lessons we learned is that parent input is vital,” he said. “Parents force accountability and follow through. They provide energy and passion because they want to make the system work for future parents.”
Dr. Carbone also cited the crucial work that Autism Speaks Autism Treatment Network (AS-ATN) has played in developing pediatric practice guidelines for the treatment of medical conditions associated with autism. He highlighted, in particular, AS-ATN treatment guidelines on insomnia, constipation and attention deficit and hyperactivity disorder (ADHD).* Related AS-ATN publications include guidelines on the use of complementary and alternative medicine and psychotropic (behavioral) medicines.
Fostering a successful transition to adulthood
In addition, Dr. Carbone emphasized the need for parents and providers to focus on maximizing community participation for children and teens with ASD. “I’m passionate about meaningful activities being a way to define the health of those with disabilities,” he said.
“In the old model, we focused on fixing a medical problem,” he explained. “Instead, we need to look at how we can assist individuals in pursuing enjoyable activities and participating in community life.”
With parent permission, he shared the story of Harrison. When Dr. Carbone began seeing Harrison six years ago, the grade-schooler had severe communication difficulties. His behavior challenges and lack of bowel control kept him and his family from enjoying the outdoor activities they once loved.
The first step in Harrison’s turn-around was simply treating his painful constipation with a mild laxative. An assistive communication device enabled him to express his needs with less frustration.
Today, Harrison hikes with his family and enjoys featured roles in his high-school’s drama productions – roles that the cast designs around his abilities.
Ensuring brighter futures
“Our collective challenge as parents and providers is to create a system that emphasizes improved function, family-centered services and coordinated care,” Dr. Carbone concluded. “If this was easy, we would have done it long ago,” he added, ending his presentation with a quote by Babe Ruth:
“Never let the fear of striking out get in your way.”
Click here for complete coverage of this year’s Autism Speaks National Conference for Families and Professionals.
* The AS-ATN’s development of autism-related medical guidelines is made possible through its federally funded work as the Autism Intervention Research Network on Physical Health (AIR-P).