What to expect • What to bring
The first visit with a new PCP
What to expect
For many autistic people, knowing what to expect is one of the best ways to reduce stress and anxiety about new situations and experiences. One suggestion to make a first appointment feel less overwhelming is to schedule an office tour. Arrange to meet the staff, be shown around the office and ask any questions. As part of that visit or on a separate occasion you could schedule a meet-and-greet appointment with the doctor. This will allow time to ask questions with the reassurance that no physical exam or treatment will be involved. It also creates an opportunity to discuss any accommodations that would help make the visit better for you or your teen/young adult. If the first visit does turn out to be for a physical exam, injury or illness, the process itself will be like a visit to the pediatrician. It will involve waiting in the waiting room, then being called back to have some basic measurements including vital signs taken.
Those could include some or all of the following:
- Weight taken by having you stand on a scale;
- Height taken be standing with your back up against a wall;
- Body temperature taken most likely with a digital thermometer either orally, through the ear or even with a wand swiped across your forehead;
- Heart rate measured by taking your pulse, typically with the medical assistant placing two fingers on your wrist where they can feel your pulse and counting the number of beats;
- Oxygen level measured with a pulse oximeter, a noninvasive, pain-free, digital device placed on the index finger for a minute;
- Blood pressure measured with an arm cuff that is inflated like a balloon and becomes tight for a second before it deflates. The doctor or medical assistant listens for pumping sounds as notes when they are heard on a gauge attached to the cuff. You can watch a video of what an autistic patient can expect with a blood pressure test, courtesy of The Ohio State University Center for Autism Services and Transition (CAST).
If necessary, the PCP may have you undergo some procedures during your visit. You can watch more videos courtesy of CAST of the more common ones below:
You will most likely be asked to change into a gown for the physical part of your exam. If you are not told, ask whether it should be open in the front or back, if you can keep undergarments on and where you can put your clothes. If you have sensory issues with a gown, you should make the doctor and their staff aware of this when you make the appointment or during your tour or meet-and-greet visit and come up with a plan to handle this. The doctor will then come in, review your medical history, ask you questions about your current health, ask about issues or concerns and then do a physical. This will involve touching and the use of instruments on the body, including a stethoscope to listen to the heart. If you or your child has had issues in the past with any part of a physical, the doctor and staff should be made aware ahead of time so a plan can be made to handle this.
During transition planning, it is common for parents/caregivers to begin stepping out of the exam room for part of the visit when a child reaches adolescence. So some young adults may already be used to speaking to their doctor one-on-one. However, it is always up to the individual whether they have someone present for all, some, or none of the visit. The doctor should accept whatever the preference is, though if a parent or support person is present, the doctor should direct their communication to the individual and allow them to communicate their own needs as much as possible. It is important to note that once an autistic person turns 18, doctors talk to them, not parents/caregivers. We will cover ‘Turning 18’ more in the Considerations section. Confidentiality between patient and doctor is legally known as the Health Insurance Portability and Accessibility Act, or HIPAA. This law does give privacy rights to minors (people who are under age 18) for reproductive and sexual health, mental health, and substance abuse services. Check your state’s minor consent laws for more information.
What to bring
Before arriving at your first appointment, it is a good idea to make sure all your medical records are transferred to your new PCP. You should contact your pediatrician’s office about having records sent to the adult PCP. Sometimes time prohibits this. Regardless it is a good idea to bring your medical record file, just in case. It can reduce stress at the appointment and make it run more smoothly. Your new doctor may require you to fill out forms. Ask about this when you make your appointment. If there will be forms, ask if you can get them in advance or find them online or in a patient portal, which doctor offices and large healthcare systems are increasingly using. Be prepared that these forms may ask for duplicate information. Be patient with them. You will likely be asked to provide an insurance card and a driver’s license or photo ID at every medical appointment. Parents or support people may also need to provide a driver’s license or photo ID to enter the facility.
Many autistic people find that verbal communication can be challenging in stressful situations such as medical appointments, so they find it helpful to write or type out their concerns in advance. Some individuals may need support to do this. Even if the individual is not ready to communicate with the doctor one-on-one, doing so with a parent or support person who can take notes is a good step in self-advocacy. In addition to the necessary documentation and paperwork, consider other items that could make the experience more comfortable. For someone with sensory issues, think about bringing sunglasses or headphones. Make sure phones or other tech devices are charged, and if possible, bring headphones to avoid disturbing other patients. If you have trouble with waiting rooms, call ahead and find out if your provider is running on time. If there is going to be a delay, ask how long. Ask if it is ok if you delay your arrival then, or if you can check-in on time and then go wait somewhere more comfortable until you can be seen.
