Helping Teens on Autism Spectrum Transition to Adulthood
Kristin Sohl, MD, FAAP
April 5, 2022
A patient I will call Matt was 8 years old when I diagnosed him with autism spectrum disorder. I didn't know what his future held, but as we got to know each other, we learned together.
He learned how to contribute to his doctor’s appointments, and I learned about his interests and how to help him reach his goals. At 12, he struggled to find his way in school. At 16, he wanted to drive, but there were bumps along that path that were frustrating. We worked through them by making plans that included managing his autism, anxiety, and ADHD as well as setting short-term goals to help him succeed. By 18, he had his driver’s permit and had mastered the names of his medicines, refilled them on his own, and started to lead his medical visits. He is now 20, a high school graduate, and he has his first job at a local grocery store.
I love seeing him thrive on his own terms. It's an honor to be there for each step of his journey.
We all go through transitions in life from an infant to a toddler, a preschooler to a kindergartener, from elementary school to middle school, from youth to adulthood, and many more. Some of these transitions just happen and no one makes special plans, while others go more smoothly when we prepare.
If your patient has autism spectrum disorder, preparing them and their caregiver(s) for the transition to adulthood can be a game-changer.
Here’s what we know: People on the autism spectrum tend to like predictability. Change can be hard, and transition to adulthood is all about change. Body changes due to hormones, environment changes with school and health care, and life skill changes with responsibilities and roles are just a few of the changes that start happening around age 12 and continue into adulthood. Legally, things change at 18, too.
What is your role as a pediatrician? Is it different for a person with a special health care need such as autism spectrum disorder? It is.
There are many special health care needs, and ASD is one of them. Pediatricians play a vital role in the transition process, and there are several steps to supporting an autistic teen through transition to adulthood:
- Learn the steps.
- Provide anticipatory guidance.
- Stay connected with regular visits.
- Engage the autistic teen and help develop their voice.
It is recommended that pediatricians start discussing the transition to adulthood when the patient is 12. Transition steps may include physical and behavioral changes with adolescence, health care changes, plans after high school, legal changes after age 18, and daily living skills needed to support independence.
“When we think ahead to the next stage in an autistic teen’s life, we can give them plenty of time to prepare for it.”
Pediatricians are the trusted source for childhood guidance. When we think ahead to the next stage in an autistic teen’s life, we can give them plenty of time to prepare for it. An example includes sharing information about puberty earlier so the family has more time to practice hygiene with the child and prepare for physical changes. Similarly, engaging the teen in conversations about decision-making is a key skill for adult health care. Practicing this with you will set them up for success as they transition to a physician who treats adults.
The American Academy of Pediatrics and national partners have resources to help caregivers and patients plan. In 2018, the AAP co-authored a clinical report with the American College of Physicians and the American Academy of Family Physicians on the transition from pediatric to adult health care. Got Transition also has useful resources for transition and health care.
Regular doctor visits are crucial to staying connected with autistic teens. You are their trusted resource for health care. It will be important to emphasize the role you play as they get older, both for routine preventive health visits and the transition to adulthood. Helping teens with autism know what to expect at their visits with you is a great way to keep them connected.
Engaging youth with autism spectrum disorder is critical to navigating the transition to adulthood. As a pediatrician, you play a key role in modeling how shared decision-making looks with teens and helping them practice. Each visit is a chance to develop their self-advocacy skills around medical decision-making and next steps toward independence. When they are engaged in setting their own health and wellness goals at a young age, it allows for a smoother transition.
Be sure to work with all teens to build skills to navigate health care, such as making appointments, filling prescriptions, and medical decision-making. Some practices enjoy making transition plans with their patients and engaging office staff in helping to teach the basics of “adulting” in health care.
No matter what developmental stage, pediatricians know how to help guide children, teens, and families to success. Guiding the transition to adulthood for youth with autism spectrum disorder is one more great opportunity to support your patients.
*The views expressed in this article are those of the author, and not necessarily those of the American Academy of Pediatrics.
About the Author
Kristin Sohl, MD, FAAP
Kristin Sohl, MD, FAAP, is a professor of clinical child health at the University of Missouri and is the executive director and founder of ECHO Autism. Dr. Sohl also is the chairperson of the AAP Council on Children with Disabilities Autism Subcommittee.