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.
Stacy Stanford is a physically disabled, mentally ill, and autistic self-advocate and activist. She graduated from Westminster College in 2016 with a customized Bachelor’s degree in Disability Justice, and she is involved in Utah politics as a vocal advocate for expanded healthcare access. Stacy is happily married, and is a doting “mom” to a herd of dogs and cats. She and her husband own an Etsy shop, and she enjoys creating art and jewelry that is social justice-oriented, sassy, and uplifting. In her spare time she really enjoys doing the dishes.