Q: My teenage son has autism and I want to help him through the transition to adulthood, including adult healthcare. How can I do this?
A: We all go through transitions in life. Some of these transitions happen quietly, like when your baby has become an active toddler. Others flow more easily when we prepare and plan.
If you are a parent or caregiver of someone with autism spectrum disorder, preparing yourself and that person for the transition to adulthood can be a game-changer. Planning can make the difference between a successful transition and a stressful situation, both for the autistic adolescent and for their parent or caregiver.
You may feel overwhelmed, but you are far from alone. Over the next decade, an estimated 707,000 to 1,116,000 adolescents will reach adulthood and exit school-based autism services. And they will need ongoing medical care and support in their daily lives.
Here’s what we know: Autistic people tend to like predictability. Change can be difficult, and the transition to adulthood is about change. It starts around the age of 12 and continues into adulthood: bodily changes caused by hormones, environmental changes with school and health care, changes in life skills with responsibilities and roles and much more. Legally, things also change at 18.
It’s a good idea to start thinking about the transition to adulthood when your child is around 12 years old. Giving autistic teens time to plan and prepare can make a huge difference. Transitional stages can include health care planning, what to do after high school, legal changes after age 18, and daily life plans.
Do not hesitate to seek advice and support from your pediatrician. Pediatricians can help you find an adult healthcare specialist, for example. They can also guide you to local and national resources to help you and your child create plans for the future.
GotTransition.org is an example of a trusted resource with information about transition and healthcare. There’s a quiz, resources, helpful calendar and FAQs for you and your child to help them prepare for the transition to adult care.
Regular visits with your pediatrician are key to staying in touch with them as a trusted resource who knows your child and their needs. As a child and youth expert, they can guide you and your child through the next stages of development into adulthood.
Pediatricians can model what shared decision-making looks like with teens and also help them practice these skills. Each visit to the pediatrician gives your child a chance to develop skills around medical decision-making and helps them become independent.
A critical part of transitioning into adulthood is helping your child develop their voice to advocate for their own health and wellness goals. Work with your pediatrician and child to develop these skills to navigate their health care, including making appointments, asking the doctor questions, learning about medical confidentiality, filling prescriptions on their own, and keeping track of health care information.
When children are engaged in setting their own health and wellness goals at a young age, it allows for a smoother transition.
The transition to adulthood is marked by many milestones. Just like when your child went from infant to toddler and through the many stages that followed, your pediatrician is an essential partner at this stage of development.
As a team, young people with autism, parents, caregivers and pediatricians can plan and successfully transition into adulthood.
Dr. Kristin Sohl is Professor of Clinical Child Health at the University of Missouri and Executive Director and Founder of ECHO Autism. Sohl also serves as chair of the autism subcommittee of the AAP Council on Children with Disabilities. For more information, visit HealthyChildren.org, the AAP’s website for parents.