Autism and the transition to adult healthcare

Today’s response is from developmental pediatrician Daniel Coury, medical director of Autism Speaks Autism Care Network (ACNet). Dr. Coury is also the chief of developmental-behavioral pediatrics at Nationwide Children’s Hospital, in Columbus, Ohio.

Our teenage son, who has autism, will soon be aging out of the pediatric practice where he has a medical team coordinating care for a number of medical issues. As we start planning his transition to adulthood, we’re wondering whether there are medical guidelines for the lifelong care of individuals with autism.

Thank you for your very important question. Too many young adults with autism fall off the map, so to speak, in the transition from pediatric to adult healthcare. Within the Autism Speaks Autism Care Network (ACNet), we’re working hard to help families prepare for this transition, beginning in adolescence.

I’m happy to report that one of our centers – the Vanderbilt Kennedy Center, in Nashville – has taken the lead in developing the kind of guidelines you seek.

Vanderbilt's online guidelines for healthcare providers

Health Care for Adults with Developmental Disabilities is an online tool kit for primary-care physicians. Importantly, it contains a healthcare “Checklist for Autism.” This checklist guides the physician through autism-specific considerations and recommendations for medical issues including sleep, dental health; gastrointestinal health, sexuality, mental health and much more.

The “considerations” section of the checklist highlights physical and mental health conditions that frequently co-occur with autism. The “recommendations” section lists useful exams and tests with their suggested frequency.

When it’s time for your son to transition out of pediatric care, we suggest that you bring this checklist to his new primary care doctor. What’s more, the recommendations aren’t limited to adults. They likewise include guidance on pediatric healthcare. So you may want to share it with your son’s current medical team as well.

If your son’s new doctors have little experience with autism, you might likewise share the Vanderbilt tool kit’s section on “Communicating Effectively” with patients who have developmental disabilities.

ACNet/AIR-P treatment guidelines

Not coincidentally, many of the guidelines in the Vanderbilt tool kit’s “Autism Checklist” are based on best-practices developed by clinicians in the ACNet. This work was made possible by the ACNet’s role in the formerly federally funded Autism Intervention Research Network on Physical Health (AIR-P) which was supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS).

The journal Pediatrics previously published a number of our best-practices research reports in a special supplement. You can access the entire supplement – or direct your son’s physicians to it.

We look forward to the day when we have Autism Centers of Excellence for adult healthcare modeled after the ACNet’s pediatric care centers. Until then, our clinicians continue to educate community physicians on the special healthcare and communication needs of individuals with autism throughout their lifespan.

We wish you and your family the best. Please contact us again to tell us how your son is doing.