How to find a PCP • Questions to ask • What to do about autism
Finding a primary care physician
How to find a primary care physician (PCP)
One of the best sources for finding an adult medical provider is your pediatrician. If they have someone they recommend, ask them to make a call to the new doctor’s office on your behalf or write you a referral script. Caregivers should also check with their own PCP to see if they will accept their autistic teen/young adult or if they can make a recommendation. If you are near any of the 20 academic institutions and children’s hospitals in the ACNet, you can check with them or their website for recommendations. Or you use Autism Speaks Resource Guide to search for ‘Primary Care’ local to you. Alternatively, you can check with your health insurance provider. Many have a searchable list of doctors covered by their plans on their website.
Questions to ask a perspective PCP
Once you find a perspective PCP, it is a good idea to call their office and ask the following:
- Do they treat any autistic patients?
- Are they willing to see a new autistic patient?
- What autism training do they have?
- What autism training does their staff have?
- Do they have a transition process? If so, what is it?
- Do they honor parallel care during transition phase and how do they coordinate sharing of info?
Think about the answers and if you are comfortable with them, schedule an appointment for an introductory visit.
What to do if the PCP has little experience with autistic people
Our collective knowledge of autism has outpaced the training the medical profession receives in caring for autistic patients. The ACNet is trying to close this gap. One site, Vanderbilt Kennedy Center, in Nashville, TN, has taken the lead in developing the kind of guidelines you seek. Health Care for Adults with Developmental Disabilities is an online tool kit they produced for primary-care physicians. Importantly, it contains a healthcare Checklist for Autism. This checklist can guide a physician through autism-specific considerations and recommendations for medical issues including sleep, dental health; gastrointestinal health, sexuality, mental health and much more. The “considerations” section of the checklist highlights physical and mental health conditions that frequently co-occur with autism. The “recommendations” section lists useful exams and tests with their suggested frequency.
When it’s time to transition out of pediatric care, we suggest that you bring this checklist to your or your child’s new PCP. We also suggest if your new doctors have little experience with autism, you might likewise share the tool kit section on Communicating Effectively with patients who have developmental disabilities. Many of the guidelines in the toolkit are based on best-practices developed by clinicians in the ACNet with the work made possible by the ACNet’s role in the formerly federally funded Autism Intervention Research Network on Physical Health (AIR-P) which was supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS). The journal Pediatrics previously published a number of ACNet’s best-practices research reports in a special supplement. You can access the entire supplement or direct your PCP to it.
Provider perspective: Tips for managing the switch to a primary care physician
By Matthew O’Brien, PhD, BCBA-D, Clinical Psychologist, University of Iowa Hospitals & Clinics, Center for Disabilities and Development
Switching from the pediatrician to a primary care physician can seem like a big challenge for an autistic young adult and/or their caregiver. But starting with finding the right provider to managing the first visit, here are some helpful things to think about:
- Whether you have a referral from the pediatrician or found a PCP through your health insurance, it is a good idea to reach out to perspective doctors and make sure they are open to working with an autistic patient. Even if they don’t have experience with autistic people, if they say they are open to it, that is a good sign. It is an opportunity for you to learn together and for you to teach them more about autism.
- It is good to schedule an appointment just to meet the new PCP. This initial appointment could be longer than a regular medical visit. It should be more a meet-and-greet.
- One valuable thing is for an autistic young adult and/or their caregiver to develop an introduction tool kit. All too often providers do not spend enough time with patients and the patient feels they are with someone who doesn’t know them well. This addresses that. I emphasize full disclosure here. This should state who you/they are, some accommodations that have helped with visits in the past and some challenges. It is also important to share what you want them to know beyond the medical basics. Include social and mental health. It should include sensory issues and aversions. But keep it digestible for the provider.
- Ask for visuals and picture sequences for procedures and even of the office location. This works well with all patients with anxiety.
- A big issue in medical care with autistic people is disability etiquette. I don’t think it’s a bad thing for an autistic young adult or for a parent to also be an educator. You are the expert on your or your child’s diagnosis. It is ok to share or ask questions about your experience and information you have gathered. It is ok for the provider to learn from you. It is also ok for them to research the information you provide further, as that is how they were trained.
- If you experience a provide who is condescending or treats the autistic young adult as a child, it is ok to find a new provider who does not engage in such barriers. When you don’t have other options, it is a good idea to be honest and say why you’re uncomfortable. As a provider if an autistic patient or their family told me they were uncomfortable and I could rectify the situation, I would. I think most providers want to do good work. We want to do better and learn.
- Re-establishing a relationship with a new provider can take time. No one is comfortable the first time. So plan to make it as rewarding as possible. Go with someone or with something special or plan to do something special after the appointment.
