The Neurodivergent Guide to Advocating at Your Next Medical Appointment

Make sure to understand how to advocate for yourself at medical appointments to ensure you feel empowered at appointments. 

Advocating for yourself at medical appointments can be a daunting task; you may have medical anxiety in general, meaning you get anxious when you come into contact with medical information or you go inside a medical facility, or you might experience anxiety about a particular provider or diagnosis that makes it difficult for you to express your needs in medical appointments. 

If you are Autistic or ADHD, it can be even more challenging to not only attend medical appointments, but also more difficult to communicate your needs and your feelings in medical appointments. You might feel confused during appointments after being overloaded with information or you might even experience a shutdown during medical appointments. A shutdown occurs when your nervous system gets so overwhelmed, you might feel yourself “shutdown” where you become nonverbal or less verbal, feel yourself retreating inward, or find it difficult to move physically or follow directions. 

Why advocacy is important for neurodivergent people

Advocating for your needs can sometimes feel overwhelming, but it can be necessary to make sure your provider understands your unique needs. Maybe you need to advocate for certain treatments or even for accommodations during medical appointments. These accommodations can look like wearing headphones during your appointment or ensuring information from the appointment is typed for you. Feeling comfortable with advocating for your medical needs can also help you navigate complex information and ensure your providers are taking your symptoms seriously. 

If you’re Autistic/ADHD/AuDHD, it can be easy for you to mask through appointments. This means you might consciously or subconsciously minimize your symptoms (“it’s actually not that painful, I can get through most days”) or you forget entirely to bring up your concerns.

To disclose or not disclose an Autism/ADHD diagnosis with your doctor

You might also be questioning whether or not to disclose an official or self-diagnosis of Autism or ADHD to your medical provider. As with all disclosures, there are risks and benefits to sharing that information with your medical team. On one hand, sharing this information with an informed and affirming provider can help them better understand your sensory needs and might even help them form a better treatment plan or come to a diagnosis faster (there are a number of medical issues and chronic illnesses associated with neurodivergence). On the other hand, sharing a diagnosis with a provider who is not neurodiversity affirming or does not understand these diagnoses, you might experience the provider dismissing your concerns further (i.e. “You can’t be Autistic, you make eye contact” or “You can’t be ADHD, you have a professional job”) or you might experience ableism or similar biases in your appointment. Each neurodivergent individual gets to decide if and when to disclose this part of this identity.

Keep reading for 7 ways you can advocate for your needs at medical appointments so you can feel less stressed attending these appointments while also ensuring your concerns are addressed appropriately and professionally. 

1. Write down your concerns to present at the appointment  

Bring a journal or even a note on your phone with you that lists current symptoms, including when they first started and any noted triggers. Bring a list of topics you would like to discuss with your provider and any questions you would like to ask your provider. By writing these items down, you are more likely to bring them up and less likely to forget your points as medical anxiety can cause you to feel less organized or less able to communicate your needs. 

You might also include:

• Relevant tests and imaging

• Documentation of previous diagnoses

• Photos or documentation of symptoms (when they occurred, severity, etc)

• List of medications and past procedures

2. Bring a support person 

Having a support person in the room can be an easy way to help you not only ease your anxiety of going to the doctor, but they can also assist you in advocating for your needs, sharing information with the provider, and writing down any information from the provider that you will need to remember. It can also help to keep you motivated to use your advocacy skills by using another person to body double if you’re neurodivergent. 

3. Ask “How did you come to that diagnosis?” 

If you believe your provider might be dismissing your symptoms and offering a diagnosis you are unsure of, it is perfectly acceptable to ask “How did you decide on that diagnosis?”. Not only can this question help you understand how your provider is conceptualizing your case (and can help clear up any confusion), but it can also help you see if your provider is truly considering all of the information you are presenting. 

4. Ask “What are my differential diagnoses?” 

A “differential diagnosis” is a term describing another diagnosis that may explain your symptoms. For example, if a provider is diagnosing you with ADHD, they might have a differential diagnosis of Bipolar 1 disorder as these mental health diagnoses share common traits. Bipolar 1 would be another, less likely diagnosis that would explain your symptoms and guide treatment. If your provider is unable to provide differential diagnoses, it might be a sign they are not considering all of the symptoms or may be unsure how certain diagnoses present. 

5. Ask “How did you rule out these differential diagnoses?” 

If you are unsure about a diagnosis or differential diagnosis from a provider, you can also ask “How did you rule out these other potential diagnoses?”. A well-informed provider should be able to integrate test results, procedural results, and patient-reported data to rule out certain diagnoses. They should be able to clearly explain how certain diagnoses were ruled out. 

You can also say “I know sometimes serious symptoms can look like non-serious symptoms. How can you tell that my symptoms are not related to a more serious condition?”.

6. If the provider only offers weight loss as an option for treatment, ask “Does this diagnosis/health concern also show up in people who are smaller than me?” 

Anti-weight bias and sizeism are unfortunately common in the medical system. It can lead to incorrect diagnoses, issues with medication dosages, and more. Sometimes asking the question “Does this occur in people who weigh less than me/are in smaller bodies?” can help to put the oneness of the question of weight back on the provider and help to advocate for your issues to be considered through a Health At Every Size lens.

7. If your provider denies a test

If your provider denies to you a relevant test or procedure, you can ask them to document their refusal and the reasons for that refusal in your chart.

If you experience medical anxiety at doctor’s appointments or similar medical appointments be sure to check the 7 coping tools you need to lessen your anxiety at medical appointments. If you need to, you can save this blog post on your phone to bring with you to medical appointments to share with your provider.