I’m an Autistic Doctor. Here’s How to Improve Care for Autistic Patients.

— There are robust resources available to help

by Thomas Pineo, DO April 13, 2024

In 1983, I signed up for a paper route at the age of 13. Every morning, I rose early, got on my bike, picked up the papers, and delivered them to my subscribers. After that, I headed off to school and my other activities. I was once described as a hyperactive child, but, after starting that paper route, my mother was relieved to see me “settle down” for the first time in my life.

I delivered those papers without fail every day, through the warmth of summer, the cold and dark of winter, and the wet and rainy days of spring and fall. My father drove me if the weather was too severe, but mostly, I worked alone. And I did it all for 5¢ per paper and $14 per week. I had a job, and I loved it!

It would be another 40 years before I would recognize my own Autistic traits in that paper route. Those traits included the joy of the repetitive motion of my bike, the sensory gratification of the wind in my face, the calming effect that morning activity brought to my schoolwork, the comfort of a daily routine, and the determination needed to not give up.

When I was diagnosed with autism in my 50s, I joined the lost generation of Autistic adults who missed out on an autism diagnosis as a child. The prevalence of autism in children is 2.78%, but neurodivergent traits in the general population (including autism, OCD, ADHD, dyslexia, and others) can be found in as many as 15-20%opens in a new tab or window. I am not alone; there are many other undiagnosed Autistic and neurodivergent adults. In fact, Autistic adults are about 30 times less likely than children to be diagnosed.

As a physician, understanding autism and neurodivergence has helped me see how sensory and communication differences affect patient care. I recently cared for an elderly patient in the hospital with profound anxiety. He complained about how loud the hospital was and that he could hear conversations up and down the halls, all day, and all night. We talked about sound hypersensitivity, I offered him a set of earmuffs, and he smiled and thanked me. The next morning, I walked into the room as he was dozing with the earmuffs in place. When I gently woke him, he said he had slept well for the first time in years.

Healthcare providers need to watch out for neurodivergent traits in their patients. Healthcare is busy and we may not have access to comprehensive psychological evaluations to figure out which of our patients is autistic. We need to ask about sensory issues and be on the lookout for Autistic traits.

Jonna Eriksson, MD, PhD, developed a rapid screen which is a short autism screening questionnaire composed of the first five questions of the RAADS-14 Screen. This could be useful in busy healthcare settings, like hospitals or emergency departments. GIFTS is an acronym to help you remember the questions.

Groups: It is difficult for me to work and function in groups.

Interpretation of expectations: It is hard for me to know what others expect of me.

Feeling: It is difficult for me to understand how other people are feeling when we are talking.

Textures: Some ordinary textures that do not bother others feel very offensive to me when they touch my skin.

Social: I don’t know how to act in social situations.

Each question is scored using the following answers: True now and when young (3 points), True only now (2 points), True when young (1 point), and never true (0 points). 4 or more points out of 15 have a sensitivity of 93% and a specificity of 45-49% for autism.

When you encounter a patient with Autistic traits, create Autistic SPACE:

Sensory: Ask about sensory accommodations, like ear plugs or headphones; sunglasses; lowering the lights; and a weighted blanket. Find out whether the patient has an aversion to certain foods or fabrics.

Predictability: Give plenty of notice with planned tests or procedures. Narrate your work so that patients always understand what is about to happen to them.

Acceptance: Don’t judge Autistic traits as something that should be hidden or in need of correction. Rather, accept them as a normal part of human variation.

Communication: Verbal and nonverbal communication differences between healthcare personnel and Autistic patients are common. Ask questions to confirm understanding.

Empathy: Contrary to stereotypes, Autistic people do not lack empathy. We can be deeply affected by healthcare challenges. Be prepared to give more time and support during your encounter with Autistic people.

Recognizing and supporting Autistic patients will not only improve communication but will also improve satisfaction and create trust. Don’t be afraid to talk to your patients about Autistic traits. Breaking down stigma requires awareness and discourse.

I continue to bring the same joy of routine and determination to patient care as I brought to my paper route 40 years ago. And yes, I still love to ride my bike. Autistic traits can bring struggles, but they are also GIFTS.

Autism is a fascinating and complex condition, and Autistic people have many rich stories to tell. There are simple things, like hearing protection and light dimmers, that healthcare systems can do to improve the care of Autistic people. Learn more about autism and work with your healthcare institution to create Autistic SPACEs.

Online autism screening tools include the Autism Quotient (AQ)opens in a new tab or window or the Ritvo Autism & Asperger Diagnostic Survey-14 (RAADS-14). Helpful resources can be found at the Association for Autism and Neurodiversity and The Autism Society. Further information can be found in Caring for hospitalized Autistic adults and is this autism? A guide for clinicians and everyone else.

Thomas Pineo, DO, is a hospitalist and medical director at UPMC Community Osteopathic Hospital in Harrisburg, Pennsylvania.