While there are many autism services available to pediatric and preschool-aged patients, as children progress from teens to adults, access to autism care is often more limited. Tisa Johnson-Hooper, M.D., a pediatrician at Henry Ford, is working to change that. Here she outlines goals to set and what to expect during the healthcare transition process for individuals with autism.
Autism Care Goals For Teens And Adults
According to Dr. Johnson-Hooper, two primary care goals for people with autism are maximizing independence and providing safety.
Maximizing independence
Everyone with autism should be assessed by a medical professional for various levels of independence. “The inability to live alone does not preclude independence; with appropriate support, individuals can still develop skills and achieve their fullest potential,” says Dr. Johnson-Hooper. “This independence can extend to all areas of life, including food choices, individual preferences and personal abilities. Even small decisions are meaningful and should be respected.”
Some key skills that you might consider working on include:
- Doing chores
- Participating in activities of daily living (getting dressed, personal hygiene, etc.)
- Using money
- Cooking and preparing food
- Making appointments
Specific to the healthcare transition, other skills to focus on include:
- Knowing what their medications are for
- Taking medications independently
- Naming their allergies
- Knowing their medical needs
- Scheduling medical appointments
Providing safety
Part of this increased independence plan is making sure individuals with autism both feel and are safe within their communities.
Exploring and wandering may be common behaviors your child or teen exhibits, but this can put them in dangerous situations. Some safety practices you might put in place:
- Make sure your child can swim
- Install additional locks or sensors at home
- Establish family emergency and safety plans, including a fire safety plan
- Review internet safety practices
- Provide proper sex education and teach about sexual activity boundaries
- Discuss the dangers of experimental use of drugs and alcohol
“When it comes to healthcare, look for providers that are uniquely equipped to modify care to meet your child’s needs,” says Dr. Johnson-Hooper. “Since behavior is often a key way to communicate, modifying workflows and using appropriate tools to meet each patient’s sensory, communication and behavioral needs can help them succeed and build independence.”
Starting Your Healthcare Transition Process Early
GROW Center for Autism & Intellectual/Developmental Disabilities
While your child may not age out of pediatric care until they are an adult, it is important to begin healthcare transition planning while they are young. (Dr. Johnson-Hooper recommends around age 12 or younger.)
“Starting this process young can help prepare you and your child for their future health care,” says Dr. Johnson-Hooper. “It gives parents and providers more time to present children with early opportunities for independence.”
Your provider’s role
Health care providers can use health skill readiness assessments to help evaluate what independence skills your child may need to work on. From there, your child’s primary care provider can help guide and prep your child’s progress by providing resources, anticipatory guidance and structures to parents to help present opportunities to your child.
Parent or guardian’s role
Lots of practice (and patience) is needed to help individuals establish new skills. Not only is it up to parents and guardians to present these skills, but they must be prepared to teach in a way that can be regularly reinforced. Dr. Johnson-Hooper recommends this approach:
- Have your child see you do a skill
- Have your child perform the same skill
- Have your child teach you how to do the skill
This cycle may need to be repeated several times before new skills sink in. Parents can also take advantage of social stories and visual prompts to support their child performing the new skill.
Additional resources
“One of the biggest concerns that we see is that once individuals with autism age out of pediatric care, they often end up using the emergency room as their main source of care instead of their primary care provider,” says Dr. Johnson-Hooper . “Fortunately, there are programs and resources available to help families prevent gaps in insurance coverage and to guide them in understanding and navigating guardianship and supported decision making options.”
Local organizations such as The Arc Michigan, Autism Alliance of Michigan and Michigan Alliance for Families advocate for individuals with intellectual and developmental disabilities by providing everything from legal resources to education transition planning.
Additionally, Dr. Johnson-Hooper recommends working with community health navigators to support your child’s unique healthcare needs and to find additional resources for your family that are close to home.
Reviewed by Dr. Tisa Johnson-Hooper, Medical Director of the Generational Resilience Opportunity & Wellness (GROW) Center for Autism and Intellectual/Developmental Disabilities. She sees patients at Henry Ford Medical Center – Harbortown.
