Autistic Health Care Advocacy

By Ann Oldendorf, MD

I am a retired urologist and a mom who will never retire. My two children are now young adults, but they continue to seek my guidance as they learn their new roles in society. My son, who is the eldest, was diagnosed with autism at age 3 in 1999. Somewhere around age 2, his verbal abilities regressed and he withdrew into his own world, hand flapping and gesturing. At the time, I knew little about autism but I immersed myself in the literature and became my son’s advocate in both the medical and educational world. The valuable lessons I learned from parenting my autistic son  became an incredible asset to me in my medical practice.

Below, I’ve listed what I have learned over the years in hopes that our experiences might help you navigate the medical experience more smoothly.

Making A Medical Appointment

1. Share the diagnosis of autism along with the reason for the appointment and request a provider who may have experience with autistic patients.
2. Request additional time for the appointment if necessary.
3. Request a readily available exam room or quiet room if your family member finds a waiting room too stimulating. Appointments tend to run “on time” when they are first morning or first afternoon appointments so ask for one of those if possible.
4. Inform the scheduler if the patient is verbal or non-verbal, and if ancillary communication devices will be used. Schedulers often provide important notes on the schedule to inform the medical staff ahead of time so that they may be more prepared for the appointment.
5. Ask if you may fill out any paperwork ahead of time or provide this information on an online patient portal. This will reduce waiting time.

Preparing for the Appointment

1. Make sure that the physician’s office has any pertinent medical history and test results prior to the appointment day so that these may be reviewed ahead of time. This can also reduce wait time.
2. Prepare your family member for what to expect. Consider using visual aids or storybooks to explain what will happen. Most offices will consider a pre-appointment visit to allow the patient to become more familiar with the office setting. This may help you identify potential sensory triggers (such as noise, lighting, etc.) that may be avoided on the day of the appointment!
3. Prepare the provider with an introductory short letter. This should describe how the patient prefers communication, any interests or likes/dislikes, and any particular triggers to avoid. Does the patient self-stimulate and if so, how? Keep a copy of this for all medical appointments and hospitalizations. Bring this with you on the day of the appointment.
4. Make a list of the issues you want to address during the appointment. It is easy to forget what you want to ask and having a note allows you to jot down items during the discussion as well.

The Appointment

1. Allow yourself extra time as needed to park and find the office. Rushing adds to the stress and may trigger meltdowns.
2. Bring soothing items, such as weighted blankets or favorite toys/books and personal items for listening to music or watching a video.
3. Consider bringing something to drink or a small snack. Hunger will lower one’s ability to manage stress.
4. Let the provider know if the patient needs extra time to answer questions. Many providers are unaware of the “8 second rule” which allows time for a person to process and understand what you are asking or saying. The provider needs to listen and be patient.
5. Many autistic patients have difficulty with interoception – the ability to sense the internal state within our body. Examples of this are feeling hunger, the need to urinate, or sensing pain. Not understanding our internal state makes self-regulation challenging, and not being able to communicate pain to a physician is especially challenging. If the patient struggles with the interoceptive sense, let the provider know this and you may have to educate them!

Communication is the key to navigating a medical appointment and this is true for all patients, not just those on the spectrum. As I have learned, some advance planning can make a large difference in the outcome of the experience for both the patient and the provider.

Ann Oldendorf, MD, is a mother of two and an Adjunct Clinical Urologist at the University of Michigan. Her eldest son was diagnosed with Autism at age 3 and is now a Civil Engineer. She and her husband enjoy visiting their children and traveling.

GO BACK TO ISSUE 17

Read more articles on “How Self-Advocates are Changing Health Care” in Zoom Autism Magazine, Issue 17:

Cover Story

Feeling Comfortable and Understood by My Medical Community by Chloe Rothschild
Includes Chloe’s Tips for Self-Advocacy in Health Care

Feature Stories

• Why I Became Passionate About Autistic Advocacy in Health Care by Lydia Wayman
  A Letter from our Guest Editor
• Health Care Self-Care on the Spectrum by Delaine Swearman
• How Serious are Health Care Issues in the Autistic Community? by Campbell Teague

Big Question

What is the Most Important Thing for Doctors to Know about Treating #ActuallyAutistic Patients?

Our Columnists

• Cummings and Goings: Hope and a Fighting Determination! by Conner Cummings
• Showing My Body the Grace It Deserves by Gretchen McIntire
• THE VIEW FROM HERE: A Glimmer of Hope for Those Who Struggle by Daniel Derrico
• How We Manage the Fear and Anxiety of Doctor Visits by Megan Amodeo

Discover more Zoom Issues:

• Issue 13: Family
• Issue 14: Trailblazers
• Issue 15: Powerful Women
• Issue 16: Traveling the Spectrum Way!
• Archived issues on the Zoom Home Page

More autistic-written articles and author interviews on our blog

What does Zoom have to do with Geek Club Books nonprofit mission?

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