Going to a healthcare appointment can be anxiety producing for many people for many different reasons. For example:

  • Going to an appointment can cause anxiety because it is is a change in schedule or daily routine. –How will this change my normal routine? How long will it take to get my routine back to usual?
  • Not knowing what to expect at the appointment can cause anxiety–Will it go well? Will I be heard and understood? Will my needs be met? Will I remember to share all that I want to share with the provider?
  • The overwhelming sensory environment experienced on the way to the visit, at the visit and after the visit may cause anxiety—Will I feel overwhelmed? Will I be regulated enough to communicate with the provider? Will my sensory needs be accommodated for during the appointment?
  • Negative past healthcare experiences can also cause a great deal of anxiety for new appointments—Will it be the same frustrating situation as last time?

Going to healthcare appointments are a necessary part of caring for your health needs, so it can be really helpful to learn strategies to help manage your anxiety and help you feel comfortable and successful at your healthcare appointments. There are many different ways to manage your anxiety for healthcare appointments. Below are some of our favorites.

There are several strategies that you can use to help you manage your anxiety during healthcare appointments. 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.

Before Appointment Card – The purpose of this card is to provide a visual reminder of an upcoming healthcare appointment and to help you remember to take the steps needed to be prepared. Usually preparing for an appointment in a strategic way can help to reduce some of the anxiety you may experience over healthcare appointments. – Before Appointment Card

Healthcare Notebook – The purpose of this notebook is to provide a visual support to guide you through the 3 main aspects of a medical appointment (check-in, seeing the doctor, check-out). There can be a lot happening during a medical appointment—lots of steps to follow, things to remember, etc. Having a visual guide can help you cue you to remember certain steps which can in turn help reduce anxiety. Additionally, the inside of the notebook can be a great place to store important forms such as your Appointment Summary Form as well as a few of your communication strategies such as your About Me Form and your Appointment Prep Form.

Appointment Summary Form –  Many times, a lot of important information is shared during an appointment—new diagnoses, changes to medications, follow-appointments, etc. It can be a lot to understand and remember, which can understandably cause a lot of anxiety. The purpose of this form is to provide a written summary of the important information from your appointment as well as provide you with concrete steps to follow after the appointment. You can refer back to this form after the appointment to help you remember exactly what was discussed and exactly what you need to do next.

Sensory Bag – The purpose of this strategy is to create an easy way to bring regulation strategies with you to healthcare appointments. To create a sensory bag, gather items that help you to feel regulated, comfortable and/or help you to cope with the sensory environment and put them together into a portable bag. The following are examples of items that you may wish to include: ear plugs, noise cancelling headphones, essential oil in a favorite scent, fidgets such as putty or squeeze balls, a piece of Lycra to wrap around your body for deep pressure, etc. Bring this bag with you to your healthcare appointments.

Communication strategies – Many times the need to communicate during 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 communication and anxiety needs during a healthcare appointment, consider trying these communication strategies.

If possible, create/print these strategies a few days before your appointment. Especially if it is your first time using these anxiety strategies, it is best to give yourself enough time to prepare them thoroughly. The more frequently you use these anxiety strategies, the more familiar you will become which will likely reduce the time you need to prepare them.

When you are first starting out, it is best to prepare the anxiety 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.

Going to healthcare appointments are a necessary part of caring for your health needs, so it can be really helpful to learn strategies to help manage your anxiety and help you feel comfortable and successful at your healthcare appointments.

If desired, it can be helpful to prepare the strategies with a trusted person, especially the first few times that you are using them.

Review

Appointment Prep Form
Healthcare Notebook
Visual Appointment Card
Appointment Summary Form
Sensory Bag for Healthcare Appointments

Additional Resources:

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

Practice

Once your strategies are prepared, 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 anxiety strategies for the first time or two, it can be helpful to practice.

Ask a trusted person to practice with you. Although each healthcare appointment will likely be a little different, it can be helpful to practice using the strategies beforehand to help you determine how they will best work for you. The trusted person can play the roles of the office staff (health care provider and receptionist) and you can play ‘you’, the patient.

During the role play go through the steps of the appointment from check-in, during the visit and check-out:

  • Arrive for your visit with your Healthcare Notebook and Sensory Bag in hand. On the outside of your Healthcare Notebook, the Check-in Card should be attached and visible. On the inside of your Healthcare Notebook should be a few copies of your About Me Form, Appointment Prep Form and a few copies of the Appointment Summary Form. Practice checking-in, referring to your Healthcare Notebook (Check-in Card). While you are waiting in the waiting room, practice using something from your Sensory Bag to help with regulation.
  • Moving forward in the appointment, when you are called to visit in the provider, you can move the cards on your Healthcare Notebook so that the Seeing the Doctor Card is visible. Refer to the card to help guide you through the visit.
  • Once you are finished with the provider, move on to practice the check-out process, making sure the Check-out Card on your Healthcare Notebook is visible. As the card reminds, practice having the Appointment Summary Form completed before you leave the appointment. This will help you understand the next steps you need to follow after the appointment.

Reflection

Did you use your anxiety strategies?

If yes:

  • Which did you use?
  • What worked well?
  • What didn’t work well?
  • Is there anything you want to try differently for the next appointment?

If no:

  • What prevented you from using the anxiety 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!).