Autistic Patient and Caregiver Voices: Healthcare Has to Change

August 21, 2023

Why are positive relationships important in healthcare?

Numerous studies show that when patients have a positive relationship with their doctor, they are more likely to adhere to their medical treatment. Better adherence is associated with better health outcomes. Unfortunately, overall, autistic patients and their caregivers have low levels of satisfaction with their healthcare interactions.

More autistic voices are needed.

In a peer-reviewed published article entitled, “’Respect the way I need to communicate with you:’ Healthcare experiences of adults on the autism spectrum,” the authors provide numerous examples and quotes on difficult healthcare interactions that often center around communication issues, sensory difficulties, and provider’s assumptions, misconceptions, and lack of knowledge about autism. In addition, parents of patients with autism often report that physicians do not take their concerns or suggestions seriously and that they “don’t have a voice.”

Our Healthcare Experiences Survey

As part of the Advancing Healthcare Initiative, Autism New Jersey launched a Healthcare Experiences Survey in October 2022. While it will remain open so we can continue to hear the voices and lived experiences of autistic patients and their loved ones, we presented the current results to the Autism New Jersey Healthcare Consortium members in July. Each member expressed great interest in the results and agreed that it motivated them to improve healthcare for New Jerseyans with autism.

General Findings

Our results reflect similar themes and level of satisfaction as other published surveys. The chart below shows the average scores of how much families and autistic individuals agreed with various statements regarding their interactions with healthcare providers. A score of 0 would reflect that they did not agree with the statement at all, and a 100 would reflect full agreement with the statement. As you can see, overall, respondents do not agree that their interactions have been positive.

Some Individual Responses

In addition, many of those who filled out our survey also provided poignant personal experiences that highlight the impact of these negative experiences with healthcare.

There were a lot of bad experiences over the years,

from her being held down for bloodwork draws and being taken to the emergency room due to a problem behavior when all it did was reinforce the attention she was seeking (she was not injured, it was just their protocol).

The worst was dealing with her cancer care….Nurses, doctors, and aides were not able to follow the recommendations of the psychological team. She had problem behaviors as a result….I couldn’t figure out how to get around the multiple systems coordinating and communication re: services. …. People never learned how she communicates and didn’t use her communication device.

I could go on.

My mom says most people don’t know how to give me enough time to respond

and don’t know how to respond with respect for my dignity. I use AAC voice output, and [there was a] new person every time. Also, the nurses were always asking my mom, or they were not reading my chart, so they didn’t know I use AAC. I was not okay in general practice until I got a doctor who specializes in geriatrics, so she was knowledgeable about communication disorders. Also, pediatric urologists didn’t listen to my medical history from my mom, and they kept missing my problem.

The psychiatrist who was a friend helped me without getting paid.

Generally, physicians are well-intentioned,

but are clearly frustrated by nonverbal and severely intellectually disabled individuals who cannot relate to what they are experiencing.

So the outcome has been a failure to diagnose serious conditions (life-threatening conditions) as physicians “dismiss” caregiver concerns and fail to order needed testing.

The Path Forward

Hearing these experiences combined with the knowledge of the health disparity experienced by those with autism is what motivates us to continue our work with the Advancing Healthcare Initiative. Through our Power of Connection, we plan to provide meaningful and credible information throughout the autism and healthcare communities as well as lead a large-scale collaborative approach to improvement via our Healthcare Consortium.