Why leave the pediatrician? • Transition timeline • How to start
Planning for adult medical care
Why do adults have to leave the pediatrician?
Many wonder why they have to leave their pediatrician – someone they are familiar with and may have taken care of them almost all their life. The simple answer is: human needs change as we age, and medical professionals specialize to follow the lifespan. Specifically, pediatricians are primary care specialists trained to identify and treat developmental, behavioral and physical conditions in infants, children, adolescents and young adults. After four years of medical school, they spend three years studying pediatrics as medical residents because children's bodies function much differently than adult bodies and go through many stages of growth and maturity. Take a newborn. They are seen by a hospital pediatrician before they are discharged and then released with instructions to see a pediatrician for their first well-visit 2-3 days after they leave. The American Academy of Pediatrics then recommends that they are seen six times by their doctor before their first birthday. It is the start of an amazing, rapid period of growth and development that lasts through puberty and helps determine a person’s health for the rest of their life. It is good thing that pediatricians focus on this time of life.
Not all pediatricians have the same age limit but many stop seeing patients over the age of 18 to remain focused on their specialty. The exception is if your family sees a family medicine specialist, a primary care doctor who focuses on general health care for people of all ages, from newborn to seniors. In that case, there is no need to transition to a new medical provider into adulthood. But if you or your child are among the majority who see a pediatrician, it is important to switch to a primary care physician (PCP) who cares for adults. Among them are internists, who only treat adults, and the above-mentioned family physicians. Sometimes both of these are referred to as general practitioners. For the purpose of this guide, we will refer to the collective group of primary care physicians who see adults as PCPs.
PCPs treat acute issues, or those that come on suddenly like coughs and fevers, as well as help to prevent and monitor chronic illnesses like high blood pressure and diabetes. They often focus on preventative healthcare, including screenings, vaccinations, and lifestyle. They are also able to make referrals to specialists and connect patients to other healthcare services, such as physical therapy or mental health services. Many PCPs utilize physician assistants, nurse practitioners and/or clinical nurse specialists in their practice settings who can help guide care. PCPs are generally set up to interact directly with the patient rather than going through a parent like with the pediatrician. Their offices look different too — typically there are no primary colors, nurses or assistants in character-themed scrubs or rewards offered at every visit.
Timeline for transition:
breakdown by age
Switching to adult care does not happen with the flick of a switch at age 18, 21 or when a child is no longer covered by a parent’s health insurance. Instead, it is a process, and doctors agree parents/caregivers should start planning for the transition between ages of 12-14. Note: The Individuals with Disabilities Education Act (IDEA) requires schools to provide transition planning services for students with disabilities before the student turns 16. That planning must include strategies to build independent living skills. Making healthcare decisions and coordinating care is deemed an essential independent living skill. Therefore, preparing students with disabilities to take on these roles during adulthood should be a component of any student’s transition plan. Autism Speaks Transition Tool Kit can further help you or your autistic teen/young adult chart a full path to transition. The following is a general timeline, adapted from various ACNet sites.
Under Age 12
Obtain copies of:
- social security card
- passport
- birth certificate
Start a medical record file with the above and:
- Medical history
- Diagnostic materials
- Medicine list (including current and past prescription medications)
- Developmental or educational testing results
- Vaccination history
Start establishing comfort in the medical settings by noting for your child all the things that make a pediatrician a pediatrician and how they look different from your own doctor.
Age 12-13
- Request an updated psychological assessment.
- Have a conversation with your pre-teen/teen to teach them about their health. They should know their diagnosis, what it means for them, any co-occurring conditions they have, any medications they take and why, and any allergies they have.
- Talk to your pre-teen/teen about adult medical care and the need to plan for it.
- Start to research adult primary care providers; look for autism experience and expertise.
Age 14
- Discuss sexual development, sexuality and healthy relationships.
- For girls and those with female anatomy, consider scheduling the first gynecological visit. Most will not need a pelvic exam. We focus on Obstetrics and Gynecology and what to expect and when in the Finding a Specialist section.
- Assess your child’s readiness for healthcare transition using the federal program GotTransition’s Transition Readiness Assessment Questionnaire.
- Encourage your child to ask the pediatrician questions about their health.
- Encourage your child to start having time alone with their doctor during their visit, if safe. Start small and gradually increase it over time.
- Talk to the pediatrician about a plan for transitioning to an adult primary care physician. Share this timeline with them.
Age 15
- Consider what specialists you/your teen will need for co-occurring conditions and research them.
- Talk to your teen about what to do in case of a medical emergency. Again, make sure your teen can tell a first responder (EMT, ER nurse) what their diagnosis is, any medications they are on and any allergies they have.
- Identify supports needed during a doctor visit and start practicing them. For instance, if taking adult pill medication is a goal, versus liquid form, ask your pediatrician to try that out. Note: These goals will look different for every teen.
Age 16
- Discuss the referral to adult specialists with current pediatric specialists.
- Explore providers for additional areas including dental and vision care.
- Explore the idea of starting to have overlapping annual appointments both with a primary care physician and the pediatrician.
- Assess your child’s readiness for healthcare transition again using GotTransition’s Transition Readiness Assessment Questionnaire.
- Practice or have your teen practice making a doctor’s appointment.
- Review, modify and solidify the transition plan with the pediatrician.
Age 17
- Schedule appointments with all pediatric specialists to ensure transfer of care.
- Explore the idea of overlapping or joint appointments with both the adult and pediatric specialists.
- Ensure your child can identify their medical problems, medications and allergies without parent/caregiver support or at least know how to access that information.
- Teach your teen to carry contact information for medical needs in their wallet or cell phone. Or set up a Medical ID on their smartphone.
- Make a copy of your teen’s medical record file and share it with them.
Age 18
- Have final appointments with pediatrician and pediatric specialists.
- Confirm adult providers have all relevant medical records.
- Confirm appointments with adult care specialists for any relevant co-occurring conditions.
- Review consent with your young adult. Independence and privacy are legal rights at age 18 unless caregivers have guardianship. The medical providers will now speak with the autistic young adult instead of the caregiver. The young adult can give the okay for caregivers to be at appointments and to have their medical information shared with caregivers.
- Consider scheduling a follow-up visit or phone call with providers to report how it went in order to prepare for a successful next appointment.
Every person is different
It is important to remember that every person is different. This timeline is a guideline and may vary for you. You or your autistic teen or young adult may have just started the healthcare transition process at 17, 18, even 20 years old. That’s ok. You can still follow the steps.
Additionally, rest assured all pediatric doctors are familiar with and sensitive to the transition process. There is grace and wiggle room in the timeline. It could take many years, which could provide a more comfortable transition, and could be staggered among doctors if multiple specialists are involved.
How to get started
It is one thing to have a timeline to transition in front of you. But it is another thing to be ready to make the switch.
How do you know if you are? As mentioned in the timeline, GotTransition, a program of The National Alliance to Advance Adolescent Health to improve the transition to adult medical care, can help you figure that out. It has both a quiz for youth and young adults and one for parents/caregivers that will help measure your readiness and offers helpful next steps for you depending on how you answer it.
