Health Care Appointments Make You Go “EEEK”? Consider These Tips

Going to the doctor can be stressful at times for some people. Whether you are the person supporting someone with Intellectual Developmental Disabilities (IDD) and Autism or you are a person with IDD and Autism, there are simple ways to make navigating appointments a smoother and a more positive experience.

Before the Appointment

Prior to going to the appointment, it can help to create a health summary by listing diagnoses, medications, allergies, and communication preferences. This helps providers understand needs quickly.

Using visual schedules can help as well by breaking down the visit into steps. Include things such as what happens when checking-in, how long the wait might be, what the exam room might look like, and the checking-out process. Visuals can help reduce anxiety and build predictability.

Having comfort items on hand such as headphones, fidget tools, or a favorite blanket can help with sensory discomfort. And it never hurts to call ahead to request specific accommodations. These may include asking for a quiet room, some extra time to adjust, or support staff. Most of the time the provider is happy to help make those adjustments to ensure things go as well as possible.

At the Appointment

During the appointment, the self-advocate should be encouraged to take part as much as able. They should also be supported to speak up about their needs. They may need to ask for more time or have things explained in a different way, so the information is understood.

If the person uses a communication device or tool, these things should be brought to the appointment and used. Encourage the healthcare provider to address the self-advocate and allow them time to respond. Some communication tools may include a tablet, a communication board, pen and paper, or a mobile phone. It can be helpful to have the support person take notes or ask if the visit can be recorded to review after returning home. This can help in remembering key points of the visit.

After the Appointment

When the appointment is over, it can help to review the summary of the appointment and any further instructions for care. Take time to discuss follow-up appointments or diagnostic testing. This can help to understand what may be necessary in the future.

Sharing the experience with the medical provider can also make future trips better. Explore what worked and what might need some adjustments. Keep a folder with the information about the appointment and any accommodations made. Clear records like this and communication with the team can make future visits easier.

Resources

Further, there are several resources available to help prepare for medical appointments. Check out a few below:

AASPIRE Healthcare Toolkit

• Created by autistic adults and researchers
• Offers personalized healthcare accommodation reports, appointment prep worksheets, and provider communication tools
• Explore the Toolkit – These can be found at https://researchautism.org

Autism Speaks Toolkits

• Guides including:
  • Blood Draw Toolkit
  • Dental Guide
  • Challenging Behaviors Toolkit
  • Adult Diagnosis Toolkit
• Browse Toolkits – The link for these resources are available at https://macautism.ca

Informing Families Health Toolkits

• Offers condition-specific resources (Autism, Down Syndrome, FASD)
• Includes printable forms, transition guides, and wellness tools
• Visit Informing Families – These resources and more can be reviewed and downloaded at https://informingfamilies.org

Healthcare should be accessible, respectful, and empowering for everyone. With a little preparation and advocacy, medical visits can become a positive part of the wellness journey.