What Is Medical Care Like for Autistic Adults?

Poor healthcare may be more common than not in the autistic adult population.

Posted May 07, 2018

The summer that my autistic son Nat turned twenty-five, our lives changed in a completely different, unexpected direction: health issues. I think I started noticing something was happening with Nat in September of that year. Nat lived with a caregiver at that time, so we only saw him on weekends. One morning Nat came into his day program with puffy eyes and they called me to discuss it. “He was hanging his head, quiet, not talking to himself, not walking around. I asked him some ques­tions—he started crying a little,” they said.

“What questions?” I broke in, also wanting to cry. But I knew. For months I had been worrying that someone somewhere was abusive to him. I kept asking him, in ways I thought he’d understand, “Is someone being bad to Nat? Are you hurt? Do you like your job?” But Nat has profound communication challenges, and he can’t usually answer those sorts of questions.

What I did not realize but that I know now is that Nat likely was suffering from a fractured rib—something we were to learn about a year later, from an emergency room x-ray. But at the time, I had no reason to suspect this; after all, the reason we went to the emergency room was to check for appendicitis – which he did not have. No one thought to give him an x-ray. Among the doctors there in the ER, there seemed to be no real knowledge of how to interview Nat, what protocols to follow. It felt like the examination there was mostly just guesses.

Eventually, by June it became clear that something scary was indeed happening. I had to face it: the odd hesitation, the immovable silence had been happening since September. We went to Nat’s neurologist from childhood, who ultimately sent us to a specialist in New York. But this doctor canceled, telling us that Nat was too old for his prac­tice. He referred us to another specialist, who told us the same thing. Nat’s psychiatrist started him on new medication for mood disorders, which helped but only somewhat.

It wasn’t until a year later that we would discover a telltale fist-shaped bruise on Nat’s chest, and another ER visit confirmed broken ribs – again. But I wondered if the doctors should check him for more than that – sexual assault, perhaps. They did not. Once again, I found myself feeling very dissatisfied with the lack of definite procedures here. It seemed to me that because he is an autistic adult, medical professionals throw up their hands in helplessness.

We are not alone in this kind of experience.

Phylis F., a New York parent of a thirty-year-old autistic, deaf, and manic daughter wrote to me about when her daughter had impacted teeth: “She woke up from the anesthesia and asked to use the toilet. The staff refused (because she was too groggy to walk) and offered a bedpan. She had no idea what it was!! Five nurses and the surgeon held her down for 20 minutes, unit l could convince them to take her to the bathroom in a wheelchair! The worst stories are nearly abusive.” Later on, Phylis was thrilled to find The Complete Guide to Autism Healthcare by Anita Lesko, BSN, RN, MS, CRNA. Phylis wrote to me: "She is a Registered Nurse Anesthetist who was diagnosed with autism in mid-life. After looking it over briefly, I was wowed by its breath, depth and understanding!"

No matter what your issues are on the autism spectrum, autistic adults are likely to have problems getting adequate medical treatment. Chloe Rothschild, an autistic woman living in Ohio has written for The Mighty about her experiences with medical professionals. In one piece, an open letter to doctors, she explained: ‘Communicating how my body feels has always been difficult for me. When asked if something hurts or how it feels, I may reply I don’t know. It’s just so hard to put my body’s feelings into words. Be patient, give me extra time to type on my iPad. Please don’t rush me.”

There are some wonderful exceptions out there in the medical community, who are deeply concerned with the lack of autism experience or communication strategies among healthcare professionals. Dr. Taruj M. Ali, a pulmonologist and medical director of the sleep lab at Pulmonary Associates of Richmond wrote: The patience and time needed to truly get to know a patient, how they communicate and what their ailments are is hard to do in this metric-driven world of medicine.”

Dr. Ali's experience is corroborated in Dr. Dora Raymaker et al.’s study on the barriers to healthcare, which showed that in terms of being misunderstood by their healthcare professional, autistic adults felt misunderstood 20% more than non-autistics. Fortunately, Dr. Raymaker could direct me to one of the most helpful resources I’ve come across, and which she and several highly experienced and respected autistic professionals created: the AASPIRE Healthcare Toolkit, created by autistic adults and medical professionals as a way “in” to the system of healthcare.

So far, this is the only resource I’ve found that actually gave me an idea about how to navigate Nat’s healthcare. If my own son, with parents who are about as hyper-vigilant as they come -- has experienced such cursory and sometimes negligent medical care – how much more dire might the situation be for the rest of the vulnerable and rapidly increasing autistic adult population?