“Whole Person,” Family-Centered Medical Care Addresses The Individual’s And The Family’s Unique Set Of Needs And Challenges In Autism
Over 400 attendees from across the U.S. and around the world participated in the first national conference for families and professionals, “Treating the Whole Person with Autism: Comprehensive Care for Children and Adolescents with ASD.”
Autism Speaks, the world’s leading autism science and advocacy organization, organized and hosted the conference in collaboration with educational partners at Nationwide Children’s Hospital (NCH), The Ohio State University Wexner Medical Center, the American Academy of Pediatrics (AAP), and the Health Resources and Services Administration (HRSA).
“Autism Speaks’ Autism Treatment Network (ATN) is a key initiative aimed at improving the health and well-being of individuals with ASD,” remarked Daniel Coury, M.D., ATN medical director and chief of Developmental & Behavioral Pediatrics at Nationwide Children’s Hospital. “It provides “whole person,” family-centered medical care which aims to address the individual’s and the family’s unique set of needs and challenges. We’re excited to build upon these efforts through this national conference with Autism Speaks and our other conference partners.”
The conference provided a forum for both families and professionals to learn about current guidance for addressing associated medical issues, and developing approaches to care that integrate behavioral and medical approaches across the lifespan.
“The theme of this conference, treating the whole person, reflects our ultimate goal of helping individuals with ASD to have healthy and successful lives,” stated Geraldine Dawson, Ph.D., chief science officer at Autism Speaks. These themes were highlighted by the two conference keynote speakers. Ricki Robinson, M.D., M.P.H., co-director of the Descanso Medical Center for Development and Learning, who served as the first speaker, encouraged practitioners to view individuals with ASD through a wide array of “lenses” that together paint a total picture of the child’s life. These lenses include the child’s physical and mental health, behaviors, intellectual interests and creative pursuits. By seeing the whole child, treatment and care plans can be tailored to address the individuals’ needs.
Peter Gerhardt, Ed.D., director of the McCarton Upper School and chair of the Scientific Council for the Organization for Autism Research, emphasized the need to continually think of the changing care needs across the lifespan. Dr. Gerhardt stressed the importance of making optimizing adult outcomes a much higher research priority. In particular, he noted the need to identify and focus on meaningful knowledge and skills vital for independence and fulfillment. This emphasis on care across the lifespan was further supported in the presentation by Marsha Mailick Seltzer, Ph.D., professor and director of the Waisman Center at the University of Wisconsin. A key point was the importance for researchers, clinicians, and advocates to expand their view of autism beyond childhood and to consider individuals with ASD within the context of their families. Her team’s research on adolescents and adults with ASD looks at how ASD symptoms change across the lifespan. They observed in their data that overall there is stability or some improvement in symptoms and behavior problems over time. However, they noted that there can be stage-related changes, a critical one being the exit from high school, after which improvement in symptoms slows. Moreover, after high school, income level becomes a risk factor in the worsening of problem behaviors with those in low income groups at greatest risk regardless of intellectual ability.
The conference included general science sessions providing recent developments on health-related issues for individuals with ASD, and concurrent sessions tailored to families and professionals, respectively, that provided practical examples and discussion on the identification, management and treatment of medical conditions often associated with ASD. The sessions addressed immune dysfunction in autism, metabolic dysfunction, gastrointestinal dysfunction including the GI microenvironment and impaired carbohydrate digestion, nutrition, sleep disorders, the prevalence and management of psychiatric disorders and challenging behaviors, an overview of cognitive behavioral therapies, and the trajectories of development during adolescence and adulthood. The meeting concluded with family perspectives on how to coordinate and provide care both at home and in the clinical setting.
Some highlights include the presentation by Alessio Fasano, M.D. which was focused on the relationship between genes and environment in the GI problems in individuals with ASD. Dr. Fasano, professor of pediatrics, medicine and physiology, and director of the Mucosal Biology Research Center and the Center for Celiac Research at the University of Maryland School of Medicine, noted that progress is being made in the field to better understand the biology of the gut environment but that to be effective in leading to treatments, it is going to be important to integrate the findings across these areas to “connect the dots” in building a full picture of the nature of GI disorders in ASD. Brent Williams, Ph.D., associate research scientist at Columbia University reported on his on-going research looking at impaired carbohydrate metabolism in individuals with ASD, which highlights that GI dysfunction may be attributable to distinct molecular and microbial mechanisms in individuals with ASD.
“Our hope is that both the families and the clinicians who attended this conference left with practical information that they can use in their everyday lives at home or in their clinical practice.” remarked Clara Lajonchere, Ph.D., vice president of clinical programs at Autism Speaks, and chair of the conference planning committee. “Our aim is to hold this conference annually to ensure that the community at large benefits from what is being learned through research and clinical practice.”