How One Experience Changed the Way I Approach Medicine

By Stephanie Lowell and Hasan Khan

Medical school is jampacked with learning – from basic sciences including anatomy, physiology, pharmacology, microbiology, genetics and more; to clinical rotations that range from surgery to psychiatry; to understanding intersectionality and social determinants of health, and so much more.  At each of the medical schools in Massachusetts, Operation House Call (OHC) is a small piece of the curriculum, but the unique focus on learning from the lived experience of individuals with autism or IDD and their families has an outsized impact on how these students will practice medicine in the future, regardless of what field of medicine they choose to pursue.

OHC is an experiential learning program that teaches young medical professionals the essential skills and mindsets to provide high quality, equitable care to individuals with autism and intellectual and developmental disabilities (IDD).  Students learn in class from a curriculum delivered by a combination of parent instructors and individual self-advocates. This didactic learning is followed by a home visit – where students can get to know a family in the OHC network in an informal context, outside of clinical responsibility. They learn not just about their experiences with healthcare, but about who they are as people and what their day-to-day life is like. After the visits, they write reflections on what they learned, including thoughts on how this experience will shape their own practice of medicine.

“OHC is an experiential learning program that teaches young medical professionals the essential skills and mindsets to provide high quality, equitable care to individuals with autism and intellectual and developmental disabilities (IDD).”

We could talk about the impact of OHC with statistics like, for example, that we reach over 1200 students per year, or have a network of nearly 250 families who host home visits.  We could share feedback from students about the class, including comments such as, “It was so powerful to hear directly from people impacted by IDD,” or “This was by far the best didactic session I’ve had throughout all of third year.”  Or we could talk about how the experience opened students’ eyes not just to how they might provide great care to future patients with IDD, but also become advocates for a more inclusive system.  As one student noted: “As a medical professional, I have a unique opportunity to use my voice to advocate for policy change that can have tangible impacts for patients.”

But there’s really no better way to share the true impact of our program than by sharing (with his permission), the written reflection from a recent participant in our program, a 3rd year medical student at Tufts University School of Medicine, Hasan Khan

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"On my first shift in the Pediatric Emergency Department a couple days ago, I was trying my best to understand the flow of the ED—I’d never worked in this environment and each new clinical setting always brings with it a torrent of idiosyncrasies, unwritten rules, and that’s-just-how-we-do-it-here’s. Scrambling to find which way was up in a new patient’s chart, my eyes locked in on this 11-year-old’s past medical history: “ASD”. Like a movie flashback, I recalled not four days prior when I got to hear from XX and her son YY about their own experiences in the ED and the advice they shared on talking to autistic patients.

 Being only two months into our clinical rotations, this moment also happened to be my first time caring for a patient with autism. I noticed how the rest of the team reacted to seeing those three letters in the chart—all they really wanted to know was, “Is he verbal?” Glossing over just how reductionist that question is, this patient just happened to be an easy communicator for non-autistic folk, and it reminded me first of something YY said—"Don’t underestimate anyone, more is understood than you would expect.”

Second, just because an autistic patient is “verbal” does not mean all communication they use may be spelled out for you: behavior is communication. From the website resources, I read about a patient refusing to walk, who ended up having a broken leg unaddressed for multiple days. From XX, we heard her describe how much time it took to realize that a young boy she was working with was running away from her all the time simply because he was thirsty.

Lastly, XX explained how her son YY would often answer medical questions like, “Are you in pain?” with a “no” or whatever other response he thought would please the asker.

NONE of these concepts were part of my learning, up until meeting YY and XX—and if it was, it did not stick like it will now. I don’t question the skill and experiences of the ED staff, but I’m left wondering—how has our care come to this when it could be so much better without that much effort? YY likes to meet new people by asking their birthday—would it not be a simple improvement to the patient chart to add in unique patient needs within the “ASD” diagnosis? Why should we let only three letters try to tell us as personal and complex a story as each autistic person has?

I heard once that there are as many versions of autism as there are people with autism. Hearing from YY and XX as well as the whole OHC experience have taught me that that fact cannot, should not be disempowering—it calls on us as providers to learn, chart, and literally talk with all our autistic patients and their caretakers about their unique needs and communication styles, no matter how “verbal” or “intelligible” they may be to non-autistic people.

In the end, we were fortunately able to help the 11-year-old boy in the ED, and he walked out with his mom in brighter spirits than how he came in. It was a privilege to apply what I learned from XX and YY so soon after meeting them, and I’m excited to continue doing so throughout my career, no matter what clinical setting I end up in."

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At OHC, we are so incredibly proud to work with medical students like Hasan, and to see the future doctors we teach enter the field of medicine with both the skills and mindsets critical to providing truly inclusive care.

About the Authors

Stephanie Lowell is the Director of Academic Programs and Partnerships for Operation House Call (OHC), a program of the Arc of Massachusetts, and serves as parent instructor in our medical school programs. Operation House Call partners with medical, nursing, and allied health professional schools to teach essential skills and mindsets needed to provide equitable and inclusive health care for patients with intellectual and developmental disabilities (IDD), including autism. In addition to her work with OHC, Stephanie has more than 20 years of experience as a trusted advisor to leaders across sectors on strategic and organizational priorities. Her younger son Andy is a sweet and resilient teenager with refractory epilepsy and IDD and has participated in OHC home visits for more than 10 years.

Hasan Khan is a third year MD student at the Tufts University School of Medicine in the class of 2026. He serves as DEI Representative for his class on the Boston campus with interests in medical humanities, artmaking, and storytelling. A member of the Health Justice Scholars Program, Hasan hopes to focus his career on caring and advocating for the underserved, and he enjoys volunteering and performing clinical research with local Adaptive Sports organizations. He is proud to call himself a queer Muslim from the woods of Sharon, Massachusetts.