Advocating for Yourself at Medical Appointments: Communication Tips for Adults with Neurologic or Neurodivergent Profiles

Navigating the healthcare system can feel overwhelming, especially for adults with acquired neurologic conditions (e.g., stroke, traumatic brain injury, concussion) or neurodivergent profiles (e.g., learning differences, ADHD, Autism). Medical settings often involve complex information, unfamiliar vocabulary, and high-stress situations, making effective communication at times challenging, but all the more important. This month, Cognition, Speech & Language explores practical tips and strategies to help you advocate for yourself confidently and effectively at medical appointments.

Understanding Self-Advocacy in Healthcare
Self-advocacy in healthcare means being able to express your needs, ask questions, and make informed decisions about your care. For individuals with communication challenges, this can be both empowering and necessary to ensure appropriate and effective treatment. Whether you’re managing a neurologic condition, navigating sensory sensitivities, or processing anxiety in medical environments, self-advocacy is a skill that can be developed with practice and preparation.


Common Challenges in Medical Communication
It’s important to acknowledge the unique barriers that adults with neurologic or neurodivergent profiles might face in healthcare settings, such as:

• Explaining symptoms clearly: Difficulty finding the right words or organizing thoughts can complicate conversations.
• Processing medical terminology: Understanding complex vocabulary and treatment options can be overwhelming.
• Sensory overload: Bright lights, crowded waiting rooms, or noisy environments can increase stress and make communication harder.
• Memory or attention difficulties: Retaining and recalling information discussed during appointments may be challenging.

These barriers are common, and with the right strategies, they can be addressed effectively.


Preparing for the Appointment
Preparation is key to effective self-advocacy. Here are some steps to take before your appointment:

1. Write Down Your Concerns: Create a list of symptoms, questions, or topics you want to discuss. This can help you stay focused and ensure nothing important is missed. It also allows for increased time to think and process your concerns thoroughly and without stressors before you enter the appointment. 
2. Use External Aids: Tools such as checklists, apps, or even visuals can help you organize your thoughts.
3. Bring a Support Person: A trusted friend, family member, or advocate can take notes, ask clarifying questions, or provide emotional support.
4. Request Accommodations: Contact the office ahead of time to ask for accommodations, such as extra appointment time, written explanations, or a quieter waiting area.

During the Appointment
Once you’re at the appointment, these strategies can help ensure effective communication:

1. Ask for Clarification: If something is unclear, don’t hesitate to ask for an explanation in simpler terms. For example, you can say, “Can you explain what that means in everyday language?”
2. Take or Request Notes: Use a notebook or app to jot down keywords or phrases during the discussion. If you need increased time to write or type, request it. If writing or typing is difficult, ask your support person to take notes for you or ask your physician to provide you with visit notes. 
3. Practice Assertive Communication: Be direct and respectful when sharing your concerns. For instance, you can say, “I’m experiencing this symptom, and I’d like to understand what might be causing it.”
4. Advocate for Sensory Needs: If sensory challenges arise, let your provider know. For example, you might ask for the lights to be dimmed or for a quieter exam room.

After the Appointment
Follow-up is an essential part of self-advocacy. Here’s how to stay organized after your visit:

1. Summarize Key Points: Take a moment to review and summarize the main takeaways from the appointment. This can help reinforce your understanding. This may include a review of any notes or visuals or talking with your support person. 
2. Reach Out with Questions: If you think of additional questions later, use patient portals to contact your physician directly or call the office for clarification.
3. Keep Medical Records: Organize your medical documents, such as test results, prescriptions, and visit summaries, in a folder or digital app for easy access. Sometimes this information is already organized for you in patient portals used by medical offices. Make sure that a patient portal is set up for you, and ask the office for any assistance if you need help understanding how to navigate it. 

How Speech-Language Pathologists Can Help
If you’re finding self-advocacy in medical settings particularly challenging, a speech-language pathologist (SLP) can be a valuable resource. SLPs specialize in:

• Developing communication strategies tailored to your needs.
• Creating personalized external aids, such as scripts or visual supports.
• Supporting memory, attention, and processing skills to help you navigate medical information more effectively.

By working with an SLP, you can build the tools and confidence needed to communicate your needs clearly and advocate for the care you deserve.

Advocating for yourself in medical appointments is a vital skill that can help you take control of your healthcare journey. By preparing in advance, using effective communication strategies, and seeking support when needed, you can ensure your voice is heard and your needs are met.
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Have you faced challenges when advocating for yourself at medical appointments? What strategies have worked for you? Share your experiences and tips in the comments below—your insights could help someone else on their journey!