Communicating effectively with health care providers is very important for several reasons. For example, being able to communicate how your body feels can provide your health care provider with important clues to your health. Or communicating about the accommodations you may need during an appointment to help you feel comfortable may lead to a more successful appointment. There are many different ways to communicate with your medical providers. Below are some of our favorites.

There are several strategies that you can use to help you communicate effectively with your provider. You may find one or several of the strategies below helpful. Sometimes new strategies need to be tried several times in order for you to become comfortable in using them, so be sure to try the strategy(s) a few times before you decide if it is helpful to you.

About Me Form – this form summarizes important points that your doctor needs to know about you as well as provides a list of accommodations you may need in order to communicate effectively with the provider. Complete this form prior to your first appointment and give it to the provider during the visit. – About Me Form

Appointment Prep Form – this form helps to prepare you for the appointment and organize your thoughts regarding what you need the provider to know about your health. Complete this form prior to your first appointment – Appointment Prep Form

Body Check Form – If you have difficulty communicating your symptoms (a.k.a. the way your body feels) during healthcare appointments, completed versions of the Body Check Form can help. Either complete a Body Check Form the day of your appointment that captures your current symptoms of concern (if you have any) or gather your previously completed Body Check Forms (only the forms that were marked ‘yes’ to the question at the bottom of page 2). Sharing the Body Check Form(s) with your provider can help them understand your symptoms. – Body Check Form

A Pre-Recorded Symptoms Video – Sometimes describing your healthcare status to your doctor during a visit can be difficult, so pre-recording yourself describing your symptoms and/or concerns can be helpful. Alternatively, if you are unsure of your symptoms or find it challenging to put your concerns into words, you can record a trusted person or other provider explaining their observations of your symptoms. Playback your video for the provider during your visit. Tip: keep the video short (1-2 minutes maximum)

Anxiety strategies – Many times healthcare appointments can cause a great deal of anxiety. In turn, this anxiety can create further challenges in the ability to communicate effectively during the appointment. In order to support both your anxiety needs during a healthcare appointment, consider trying these anxiety strategies.

Interoception Advocacy Card for Doctor, Nurse, or Other Medical Provider

If possible, complete the forms/video a few days before your appointment. Especially if it is your first time using these communication strategies, it is best to give yourself enough time to complete them thoroughly. The more frequently you use these communication strategies, the more familiar you will become which will likely reduce the time you need to compete them. Store all of your forms in your Healthcare Notebook so that they are all stored in one place. This can make it easier to transport them to the appointment and access them when you need them during the appointment.

When you are first starting out, it is best to complete the communication strategies in a location where you feel comfortable. Maybe it is your bedroom, a quiet corner in your home, etc. You can sit, stand, pace, etc. Do what makes you feel most comfortable.

Finding ways to effectively communicate with your healthcare providers is an important part of your health. There are many ways to communicate–it can be through a verbal conversation during a visit—but there are also other options. The suggested communication strategies provide alternative methods or supports in helping you to communicate your health needs.

If helpful, complete the forms/video with a trusted person. This can be especially helpful when you are completing the forms/video for the first few times.

Review

About me Form
Therapist Called Ahead
Tips for Completing a Body Check Form
Appointment Prep form

Additional Resources:

AASpire Healthcare toolkit – Primary care resources for adults with ASD and their providers. https://autismandhealth.org

Emergency Chat

Smalltalk conversational phrases

Pain Assessment Tool by Beyond Commerce

Pain Tracker

Practice

Once your forms and/or videos are complete, it is time to practice using them before the appointment. You may not need to practice before all healthcare appointments, but when you are using the communication strategies for the first time or two, it can be helpful to practice.

Ask a trusted person to practice with you. They can play the role of a health care provider and you can play ‘you’, the patient.

During the role play-When they first greet you as if it is the start of the appointment:

  • Practice handing them the About Me Form. Think about what you will say when you hand them the form. Maybe it is something like, “This is form has important information about me that I need you to know. Will you please take a minute to read it?” (Tip: you can write what you want to say on the top of the About Me Form if you think you could have a difficult time remembering what to say during your actual appointment).
  • Moving forward in the appointment, use your appointment prep guide to answer the provider’s questions. You can either read from the form or show relevant parts of it to the provider and they can read it.
  • If you completed a Body Check Form as a way to communicate your symptoms/concerns, practice sharing this form with the provider when they are asking you questions about how you are feeling or to describe your symptoms/concerns.

If you have a Pre-Recorded Symptoms Video, practice playing this for the doctor as well.

Reflection

Did you use any of the communication strategies during your appointment?

If yes:

  • Which did you use?
  • What worked well?
  • What didn’t work well?
  • Was the provider open to using your communication strategies?
    • If yes, great.
    • If no, what is your plan for moving forward? Perhaps ask a trusted person for advice, or ask them to call the office before your next appointment to ensure the provider understood what you were communicating.
  • Is there anything you want to try differently for the next appointment?

If no:

  • What prevented you from using the communication strategies?
  • What is your plan for overcoming this obstacle(s) for your next appointment?
  • Do you need to ask someone to help you with this plan? If so, who will you ask?

Important note: Although it can be helpful for you to use strategies to help healthcare appointments go smoothly, it is also the responsibility of the medical provider to contribute to the success of your appointment. Sometimes an appointment may not go well because the medical provider lacks knowledge regarding autism. They also may not fully understand what you need from them to be successful during healthcare visits. Many providers are interested in learning how to better support autistic patients. However, you may encounter a provider that is not cooperative with your strategies and needs during a visit. In this case, here are a few suggestions:

  1. Talk to a trusted person about your concerns. Share with them the strategies you tried during your healthcare appointment and the response(s) of the provider. Sometimes it can help to get the input of a trusted person and they can help you determine next steps you should take.
  2. Share feedback with your provider via email or healthcare portal. After an appointment, send a short message to your provider about what they did that was helpful as well as a few things you would like to be done differently during the next appointment. This can establish open communication. When making requests for the provider to implement during the next appointment, it can be helpful to state the request and then explain how that will promote your success (for example: please turn off any overhead fluorescent lights because they are so overwhelming that it reduces my ability to focus on what you are saying).
  3. Seek a more supportive provider. If your insurance allows, seek out a different provider that may be more supportive during your visit. Many people find a new provider if they are not satisfied with the care they are receiving.   
  4. Start out with a provider that is knowledgeable in autism. To reduce the chance of being misunderstood or unsupported by a provider, before making an appointment, inquire about their knowledge of autism and experience with other autistic patients. Finding providers that have advanced understanding in supporting autistic patients can be a challenge at times, but they do exist. You can even try contacting pediatricians or pediatric specialists (e.g., pediatric Occupational Therapists) who tend to have more autism training than adult providers and ask them to consider accepting you as a patient/client (it can be helpful to explain to them why!).