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.

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.