High-Functioning Autism: Preparing Your Young Adult To Take Charge of Healthcare

It may seem overwhelming for your high-functioning child with autism to learn to navigate and take charge of their own healthcare. But the good news is that it is possible with patience and practice. Here are ways you can get started on the transition.

Start Early

The more time your child has to get used to new information and routines, the more comfortable they’ll feel in a new situation. Because these children — and adults — don’t understand innate responses or generalizing from situation to situation, they need explicit modeling of what to do and visual reminders for new circumstances. And time to practice, practice, practice!

Find Cooperative Adult Doctors

As your child becomes a young adult, there is a natural transition from being cared for by a pediatrician to having an adult primary care physician (PCP). It can be challenging to find a PCP who understands young adults on the autism spectrum and is willing to work with them. That’s partly because autism is a childhood diagnosis, so adult doctors are not as familiar with it, and it takes patience when a high-functioning autistic adult needs extra time.

To get started, you can:

• Ask your child’s pediatric doctors for recommendations for adult doctors
• Interview the adult doctors before your child turns 18 so you can be involved
• If possible, find a doctor's office that offers sensory-friendly environments to reduce anxiety
• Try to schedule a visit with your child before they turn 18 so you can attend

Create a Script

After you find an adult doctor for your child with high-functioning autism, help your child learn what to say and do at the appointment. Together you can create a written script, so your child has a visual reference if needed. Practicing the script will help lessen your child’s anxiety about this type of social interaction and build their self-confidence.

You can help your child by:

• Role-playing so they can practice interacting with an adult doctor
• Asking the new doctor if your child can video the visit on their phone to refer to afterward
• Help your child organize the videos and photos on their phone or paper scripts in a binder for easy reference

Other Ways to Prepare for the Visit

It can help to inform the healthcare provider in advance of your child’s diagnosis along with information on how your child prefers to communicate, sensitivities and any autism-related behaviors that might take place during the visit. In addition, consider teaching your child some of the strategies you already use:

• Minimize wait time by asking for the first appointment of the morning or the afternoon (immediately following the office lunch break). Another way to reduce potentially stressful waiting time is to call from the parking lot and ask if the doctor is on schedule. If appointments are running behind, ask the staff if they can call you shortly before the provider is ready to see your child and then go into the office.
• Allow your child to bring a comfort item, such as a favorite stuffed animal, toy or blanket, to the doctor’s office.
• Ask for an accommodation. For example, some children on the spectrum prefer to stand rather than sit during an exam. If that’s true of your child, ask whether the nurse or doctor can do some things while they are standing. To make shots less painful, request a numbing cream be applied first.
• Ask about the support staff in the office. Sometimes a nurse or medical assistant has more time than the doctor to explain treatments, procedures and medications.

Managing Prescriptions

Learning to manage prescriptions takes practice for all teens. For high-functioning young adults with autism, the key is to break down the process into manageable steps and have your child master it one step at a time. Start by taking photos of each prescription bottle and adding them to your child’s phone or medical binder. Once they have a visual reference, you can start teaching them about reading labels, understanding how to take the medication and learning how to get refills.