Transitioning from Pediatric to Adult Care

It can be a challenging time as autistic patients leave the services of pediatric practices and enter a health care system for adults that is less familiar with their needs and less prepared to meet them. There’s no required age for this transition to happen, but it is usually between the ages of 18 and 22, and can happen as late as age 26. See our articles on insurance for more information about important decisions at ages 22 and 26.

Got Transition, a site focusing on health care transitions, is a valuable resource for families and self-advocates. It offers a readiness assessment tool, a transition timeline, and a robust frequently asked questions section.

There are a few key steps involved when transitioning from a pediatrician to an adult primary care provider (PCP).

Consider a “meet and greet” pre-appointment

For autistic people who require high levels of support, setting up an additional appointment when booking the patient’s first visit with their new PCP can be helpful. It can be reassuring for caregivers to meet alone with the PCP before the patient’s first visit to establish if the clinician is indeed a good fit. (Most insurance providers will cover this kind of consultation, but it’s always good to check.) Because the transition from pediatric to adult care often comes at a time when other big transitions are afoot, it may also be helpful to talk about any planned transitions from school to work or adult services either at the caregiver-clinician visit or at the first appointment.

As part of the HMS Clinician Course, Dr. James Bath, Primary Care Provider for Autistic Adults at the Lurie Center for Autism, helped to develop an Initial Visit Patient Profile form to facilitate a positive clinician-patient exchange of the key information during this transition.

Transfer medical records

Once the new PCP is in place, it’s important to make sure that health care records are transferred to the new practice. Be sure to include specialist records as well as those from the pediatrician. These records should include all appointment notes as well as results of lab work, imaging, or other tests, so the new PCP has access to health history as well as current medical concerns.

Tips on transferring records:

Most clinicians use electronic health record (EHR) systems to store medical data, but sometimes different vendor systems are incompatible. It’s best to ask the receiving clinician’s office if there is anything you need to do on your end to facilitate a successful handoff.

Be sure to include records from specialists and evaluations such as neuropsychological reports (if these were completed through a school district, they will not be in the electronic medical record, but digital copies should be available from the provider).

If you’ve used a patient portal, download and keep copies of all records, as you will no longer have online access to this information once you leave a practice.

The difference between Electronic Medical Records (EMR) and Electronic Health Records (EHR)

Although the terms Electronic Medical Records (EMR) and Electronic Health Records (EHR) and are often used interchangeably, there are importance differences between them. EMRs are digital patient records and charts, while EHRs are that and more. EHRs are more comprehensive and include tools for prescribing medications electronically, ordering labs, streamlining internal and external communications, and sharing data.

Medication

Some things to keep in mind about medication:

Keep a list of all medication, dosage, instructions, and prescriber information and bring it to the first appointment. Keeping a master list will help to ensure that there are no missed doses during the transition process.

Discuss both current and past medication use with the PCP, including reasons for any past medication discontinuation, so a full medication history is clear.

Remember to pass along any new medication orders to care team members who distribute medication, such as day program providers, group home staff, teachers, therapists, or home care aides.

Care team communication

Dr. Bath reinforces the value of communication during the transition from pediatric to adult care, and establishing a role as an essential part of the health care team. He notes that “The most integral part of having a successful health care transition is that we as the providers are listening to the families and the patients, and what their experiences have been and what has been successful and what has not been so successful, because that history is invaluable.”

During the first appointment, patients and caregivers should explain how they choose to be addressed, including preferred pronouns. Many people choose to be called by their first name or a nickname, while others opt for Mr., Miss, or Ms. The use of “Mom” and “Dad” might best be left behind in the pediatric office, and generalized terms may feel uncomfortable or condescending (for example, “pal” or “sweetie”). Personal identity and the terminology around it can be especially important for autistic self-advocates, so this is a key conversation.

Susan Senator, and AAHR subject expert and parents of an autistic adult, discusses the language of autism in Psychology Today, “Please don’t call my autistic son “Buddy.”

Like a general pediatrician, PCPs coordinate care across specialties, so it’s important to make sure they are aware of other clinicians providing care. That may or may not be clear through the medical record alone, so it can be helpful to have a list of names and contact information for all specialists and other providers on hand for the PCP.

Maura Sullivan, the parent of two autistic young men, understands the need for balance when communicating about health — that everyone needs to be part of the conversation and to participate in care in whatever way they are able.

As my kids transition, I want more of their voice to be heard and less of my voice to be heard

- Maura S.