Doctor Visits for Neurodivergent Folks

If there is one thing I have learned about myself in my own autism journey that has also been supported by the clients I have been working with, it's this: doctor's appointments are exhausting. I know I struggle to make appointments for myself, even when I know I need them, and getting through the appointment successfully is typically hit-or-miss. It's especially difficult if the appointment has multiple purposes beyond a wellness check, especially if I have questions needing answers and when I find I have to advocate for myself.

I have been working with a number of late-diagnosed autistic adults who have all shared their individual struggles with doctor's appointments. Whether it's a regular wellness visit with the primary care physician, a gynecologist, or some other specialist, or a visit with a doctor to discuss questions or problems, we all seem to be struggling to make these appointments work for us. And I want you to hear right from the start that these appointments are for us. Neurodivergent people, especially those raised as female here in the south, have a tendency to put the feelings of others ahead of our own, or at least as important as our own, and in at least this one specific situation, we don't need to.

Meeting with a doctor is 100% about us and our needs.

We don't need to protect the doctor or ensure we are living up to the "shoulds" that show up. I think this is the first big place of freedom for neurodivergent people when it comes to making it through doctor's appointments. We get to set many of the rules and ask for what we need - so the first step is in figuring out what those needs are.

Sensory Accommodations

The doctor's office is especially difficult on the senses. The temperature tends to be too cold, the lights tend to be too bright, and the environment overall is typically too stale and clinical. What sensory accommodations would benefit you in your next visit? Here are a list of some suggestions that have been helpful for myself and/or my clients:

• Dress for the office and not for social norms. Wear what is most comfortable and feels most safe for you, despite the pressure of social norms to wear "appropriate" clothing. If visiting the gynecologist and needing to be undressed, request to be undressed only to the point that it is necessary and to be allowed to redress as soon as possible (e.g., some folks keep themselves fully clothed on their torso and immediately put their bottoms back on after the physical exam at the gynecologist; some people find wearing sunglasses or winter hats and wrapping up in blankets to be helpful in the exam room as well as wearing noise-cancelling headphones in the waiting room).
• Inquire about the medical necessity of any physical exam and/or touch. While physical exams are recommended within certain durations of time, it may be possible to stretch the time beyond what is average (e.g., having a pap test is typically done once a year; however, some folks prefer to extend to every 18-months, 2-years, or even 3-years depending on medical necessity and risk factors).
• Request to schedule a visit with your doctor with the sole purpose of experiencing the environment, familiarizing yourself with the schedule of events, and getting to meet your doctor and ask questions without the pressure of any physical exam or medical procedure. This can help in preparing for the more invasive or physically intense visit and aid in planning to best regulate for and during that visit (e.g., it's easier to know what to wear and/or what comfort items to bring when you have been to the location before). This visit also allows for asking important questions without the pressure of impending physical contact.
• Request an appointment time during which there are typically fewer people and/or when the wait time is the least likely to be long.
• Request that your doctor explain any physical touch fully prior to the touch happening and/or stating what is about to happen before it happens. It's also reasonable to request the rationale for any and all tests, procedures, exams, prescriptions, etc.
• Give yourself permission to not make eye contact if that is unhelpful for you during the visit.
• If physical contact is necessary, request additional support, for example by requesting numbing cream before a shot or blood draw or pain/anxiety medication for other types of procedures.

Additional Accommodations

Beyond the sensory accommodations, there are other accommodations that are reasonable and extremely helpful for neurodivergent people. Many neurodivergent folks have executive functioning difficulties, which can impact appointments. It can also be difficult to know the expected social norms involved in the appointment process.

• Request additional appointment reminders if remembering scheduled events is difficult.
• Bring a trusted person to the appointment and ask them to assist in ways that would benefit you (e.g., some people will ask their support person to ensure that the pre-determined list of questions are answered and concerns addressed; some neurodivergent people also benefit from having a support person to "translate" medical information in a way that is more effective for them).
• Some people prefer to stand during appointments (when possible) as opposed to sitting on the exam table or in a chair.
• Practice relaxation techniques (e.g., meditation, deep breathing, visualization, etc.) in preparation for the visit so you will have specific tools to use during the appointment. Consider using relaxing music, stimming, and other regulating techniques during the more stressful/difficult parts the visit.
• Request to send questions/concerns in writing prior to the visit, either through a medical portal of some type or through email.

Here's another important thing for my fellow neurodivergent people to know: there is no rule about whether you should or should not disclose your neurodivergence with your doctor. For some people, disclosure is anxiety provoking and adds to the stress of the interaction. For other people, disclosing can help them to feel more comfortable in then behaving in ways that work for them and in asking for accommodations. Some clients have shared that they doubt their doctor's understanding of their particular diagnosis. Many autistic women report that medical professionals question or sometimes even outright argue with their diagnoses. And here's where I get in to a couple of other really important concepts with my clients:

It is not your responsibility to educate your doctor. It is also your right to ask for what you need and to change doctors when needed and when possible.

While it's not your responsibility to educate your doctor on issues related to your mental health, neurotype, and/or functioning, some doctors are absolutely willing and interested in learning more about their patients in order to best serve them. In these situations, suggesting your doctor read certain books/websites/articles/blogs can be helpful in framing how they interact with you (and their other neurodivergent patients).

Check out the companion blog to this one, WHat doctors need to know about neurodivergence, where I talk to clinicians/medical professionals about how they can make their practice more neurodiversity-affirming, too. Feel free to share it.

Those doctors are the ones I value in my own personal life and tend to recommend to my close friends and family when they are looking for quality medical providers. It can be helpful to speak with your trusted friends and family about their experiences when looking for a clinician for yourself.

When and if you experience a medical professional who is not as willing to learn or is not inviting and accepting of your needed and requested accommodations, it is absolutely reasonable to request another provider, whether that is someone in the same practice or moving to another practice completely. You do not owe any medical provider anything - they are there to help their patients.

Even the most neurotypical people can find medical appointments stressful, so be kind to yourself in the days/weeks leading up to the appointment and the time after the appointment as you recover.

Give yourself the time and space to recover in whatever way works for you. Some folks like to get right back to their normal schedule and others will need some quiet rest. Do what works for you in each moment.

Some people find that in allowing themselves the things they need before, during, and after medial appointments, they are no longer affected as intensely and as negatively as they did prior to meeting those needs, which benefits them in the long run. You deserve this kind of care. Why wait?

What has worked for you/your loved ones in relation to making it through medical appointments? What do you wish your doctor knew? Feel free to send me your thoughts!