By Daniel Coury, medical director of the Autism Speaks Autism Treatment Network (ATN). Dr. Coury is a developmental-behavioral pediatrician at Nationwide Children’s Hospital, in Columbus, Ohio, - one of 14 ATN centers across the United States and Canada.
The primary mission of the Autism Speaks ATN is to improve health care for all individuals with autism. While our work is autism focused, our clinicians and researchers look at the health of our patients from a much broader perspective. We try to consider all aspects of their lives beyond the care they receive at our centers.
Recently the Maternal and Child Health Bureau of the US Health Resources and Services Administration awarded the ATN $15 million to continue its work as the Autism Intervention Research Network on Physical Health (AIR-P).
This federal funding builds on the ATN’s core funding from Autism Speaks. More specifically, it funds research that enhances the physical health of people with autism.
I’m pleased to describe a few of the new AIR-P projects that our ATN clinicians and investigators have begun this fall:
Improving dental care
One of our new AIR-P projects will directly address oral health in children with autism.
While oral health is a common problem area for children and adolescents everywhere, it can pose special challenges for those who have autism. As many of our families know well, autism-related sensory issues and challenging behaviors can interfere with good daily dental hygiene. They can likewise make trips to the dentist frustrating, even traumatic if not impossible.
We’ll be developing strategies and video demonstrations to help families develop proper tooth-brushing skills as well as increase the success of their visits to the dentist. The result will be gold-standard tools useful to both families and dental professionals. These will build on the existing Autism Speaks Dental Tool Kit for families and our ATN/AIR-P’s Tool Kit for Dental Professionals. (Download these and other evidence-based guides from the Autism Speaks tool kit page here.)
Promoting a successful transition to adulthood
Another of our AIR-P/ATN research projects will develop strategies for ensuring a successful transition from pediatric to adult health care. With 50,000 teens with autism reaching adulthood each year, this is a national priority.
Of course, the transition to adulthood also involves changes in educational and vocational systems of support. Our researchers will include these considerations as part of the ATN’s “whole person” approach to health care. Importantly, this research project is built on the questions and concerns that our families have brought to our research planning.
Improving autism expertise among primary-care providers
Another huge challenge for our families is access to doctors who understand the special medical needs of children and teens who have autism. We continue to hear from families worried about their primary care provider’s lack of understanding. We likewise hear from primary care doctors concerned that they lack the knowledge and skills to help families affected by autism.
We are directly addressing these needs with ECHO Autism – a telehealth program that will provide remote training for pediatricians and other primary care doctors across North America and abroad. At the core of this program will be multidisciplinary teams of autism specialists at 11 of our 14 ATN centers.
In particular, ECHO Autism will focus on improving health care for children with autism in underserved communities.
To learn more about this program, also see
“Autism Speaks Autism Treatment Network expands telehealth outreach.”
Over the seven years, the AIR-P has greatly benefited from the leadership of pediatrician James Perrin of Massachusetts General Hospital. His understanding of children with special health needs and his experience improving their systems of care has set our agenda for the years ahead. In recent years – with Jim’s increased duties as president and then past-president of the American Academy of Pediatrics – we began the transition of his leadership roles to other members of our team.
Going forward, we are very fortunate to have sociologist and autism specialist Karen Kuhlthau, also of the Mass General, assume the leadership of the ATN/AIR-P. Dr. Kuhlthau has been working as an AIR-P investigator for several years. She brings experience with the issues affecting our families and their quality of life.
The AIR-P funding will help support many other research activities across the ATN in the year and years ahead. I look forward to sharing more details on these projects with you in the months ahead.