Why Healthcare Providers Need to Recognize and Respect Neurodiversity
Growing up as an undiagnosed autistic girl, I had many “behaviors” that baffled my parents and medical professionals. Seemingly unprovoked meltdowns, ritualistic, repetitive movements, and episodes of compulsive self-injury were explained away as a part of puberty, or diagnosed as a litany of mental illnesses. Throughout the years I received poor treatment from doctors and psychiatrists who ignored physical symptoms in order to focus on mental health issues. It seemed like every physician I encountered was only capable of seeing a superficial version of me – the pre-pubescent “tantrum” thrower, the “dramatic” teenager – and the treatment I received reflected that I wasn’t taken seriously as a patient and a whole person.
As an adult I was diagnosed with autism, and the new label offered an alternate explanation for many of the conflicting psychiatric diagnoses I had been given. The meltdowns and self-injury were symptoms of sensory overload, and the repetitive movements were actually stimming – a perfectly normal form of expression and self-soothing. I discovered the thriving online world of neurodiversity and autistic self-advocacy, and soon realized I was not the only one who had been dismissed and mistreated.
Everywhere I looked, autistics shared anecdotes of abuse and accounts of dehumanization at the hands of medical and psychiatric professionals.
Because of my experiences, when I began the capstone project for my degree in disability justice, I knew I wanted to address healthcare access issues faced by autistic patients. For my research, I recruited fourteen adults professionally or self-diagnosed with autism and asked them to share stories of positive, negative, typical, and ideal healthcare interactions. The interview results were the same across the board: healthcare professionals dismiss autistic patients, which leads to anxiety and a tendency to avoid seeking care, which in turn correlates with dramatic health disparities and premature mortality rates found in the autistic population.
There is limited research on the health and healthcare of autistic adults, but existing studies agree that autistics face higher rates of a variety of diseases, as well as disproportionate rates of mental illness and suicide. Recently, a large study in Sweden uncovered rates of premature mortality 2-10 times higher in autistics compared to the general population, with an average life expectancy 16 years shorter than non-autistics. Even if autistics have a greater genetic predisposition to poor health, the mistreatment carried out by physicians exacerbates this. In fact, the healthcare provided to those with psychological, social, and intellectual disabilities (including autism) is so poor that the World Health Organization declared it a hidden human rights emergency in 2012.
In my discussions with autistic patients, they shared accounts of physicians holding back important information, ignoring obvious symptoms, and minimizing their concerns. When describing their ideal appointment, one individual stated their frustration, saying: “I would not have my symptoms blamed on my neurotype.”
Another person summarized their struggle: “(in an ideal appointment) all of my concerns would be taken seriously. That is literally it. I am so tired of doctors dismissing what I have to say.” It is no wonder the health outcomes of autistic adults lag behind their non-disabled peers when they feel set up for failure before even setting up an appointment.
Above all, my study adds to a growing body of research emphasizing the need for medical professionals to work with autistic self-advocates, treating them as competent and facilitating a patient-centered, neurodiversity-focused approach to care. Yes, there may be unique challenges, and patients may need outside-the-box accommodations, but addressing these concerns should be a part of providing high-quality accessible care. As one research participant explained, “I would like more focus to be put on how I am feeling rather than how I look or how I act, and not be treated like I am ‘difficult’ just because my disability is more complex than having a cold.” Autistics, “difficult” or not, need access to care, and until harmful trends are addressed, health disparities will persist.
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Hello Stacy Stanford,
Great job on your post! I would like to comment on it and share what I feel are relevant aspects of my experience with you. Let me preface my comments by saying that I do not have a formal diagnosis of autism. As such, it has not guided or impacted my healthcare; however, through my own examination of my behaviors and the levels of understanding commonality I feel with the autistic community, I believe that I should have been evaluated for it long ago.
My primary caregiver – my mother – never considered the possibility that I would be neurodivergent and did not look or pay attention to whether I showed any of the signs. As a result, I never considered it myself until I was in college.
Without this diagnosis, my healthcare proceeded typically until I was diagnosed with a brain tumor at 14 years old that necessitated surgery, rendering me a TBI survivor. Even now, I wonder if the tumor would have been discovered earlier had healthcare providers responded differently.
Many stereotypes guide social behavior around teenage girls. Their behavior is often said to be dramatic and hormonally motivated due to puberty. These stereotypes that place a stigma on being a teenage girl during a development period already marked by difficulty.
I think that the fact that society remains so receptive to these stereotypes can, at least partially, explain why autism diagnoses are frequently overlooked in girls and women. The ways that autistic behaviors are atypical regarding the populations of men and boys in which autism has been studied.
Because you were a child at the time, I am guessing that the healthcare providers deferred to your parents. Mine certainly did, and in general, it feels like this is the norm. In this sense, problem behaviors must have gained the attention of the parents. But there’s a huge thing overlooked here.
In order to perceive these things, the attention of the parents must be drawn. Yet, keep in mind that the only way their observance will make any difference is providing that they are both in tune with looking for it and are psychologically open to recognizing its prevalence. In the case of my parents, they were not psychologically open to the possibility and therefore didn’t register whether there were signs or not.
The same applies to providers – they must be psychologically prepared for the possibility of autism diagnoses. The fact that you were dismissed and misdiagnosed so many times indicates that the practitioners you saw either held an internal cognitive bias or that they weren’t practicing the skill of active listening. Implementing strategies to recognize and combat implicit bias, as well as practicing active listening, both require levels of skill that are necessary for competent healthcare providers.
I’m sorry that the healthcare system mistreated you, but please rest assured that you are not alone.
Keep on keeping on!