How I got here
I first knew autism as an ER physician, caring for patients who often arrived in crisis – overwhelmed, shutting down, sometimes restrained because we didn’t know what else to do. If you had asked me then what autism was, I probably would have told you something like this: autism is a neurodevelopmental disorder that leads to challenges with social skills, repetitive behaviors, speech, and nonverbal communication.
Because that is what I was taught. Western medicine diagnoses autism the same way we diagnose pretty much everything: we compare what we observe – symptoms, exam findings, lab values, images – against a standard of normal. We look for the deficit, and we fix it. And we do it inside a framework that divides the body into separate systems.
As an ER doctor, thinking about medicine in this way makes me good at what I do. It guides my practice, it alleviates suffering, and it saves lives.
But autism, like the other diagnoses in the DSM, is different. Appendicitis is an inflamed appendix. A heart attack is a blocked artery. Autism isn’t diagnosed by an underlying pathology at all. It is diagnosed by its traits. The DSM describes some of what autism looks like, but not what it is.
And so, for years, I – a well-trained physician – and the many good, caring professionals around my son missed his diagnosis. When his feelings grew too big to contain – the meltdowns, the sounds he couldn’t tune out, the days he simply couldn’t go – we saw behavior to manage. I remember my child melting down on the kitchen floor while I wondered what I was missing.
My son was ten when he was formally diagnosed. We had suspected it a year earlier, when my husband began to explore his own neurodiversity, and I – emerging from deep burnout – began to explore mine. Suddenly I was looking at my whole family tree and seeing neurodiversity everywhere.
When you live with and love autistic humans, you realize the medical definition of autism is wholly incomplete. After his diagnosis, and after my tearful read of the list of deficits and challenges he would face in his life, I felt even more urgency to understand autism, both as a concerned mom and as a curious physician-scientist. My physician brain longed for the common thread. What does it mean to be autistic?
When I attended the World Autism Conference, I put my MD credentials on my name badge, hoping to connect with my physician peers. But the Western medical community was largely absent. This was an autism conference created for and by the autistic community. I took a seat in the back row and listened.
The people in that room, while honest about the challenges of navigating a world not designed for them, didn’t see autism as much of a medical diagnosis at all. They saw it as a way of being human.
As a more focused strategy for using attention.
Monotropism describes autism not as a series of deficits, but as a difference in how attention is focused and distributed. Where most minds spread attention broadly across the environment, skimming and scanning, the monotropic mind focuses narrowly and intensely. Inside that beam, details cascade with vivid clarity. Outside it, things barely register at all.
I am forever grateful for the beautiful neurodiverse minds who wrote the original paper on monotropism in 2005, and for the many people whose writing, stories and lived experience have helped me understand it.
Monotropism opened the door, and the physician-scientist inside me couldn’t resist walking through it. I spent the next several years reading everything I could get my hands on, trying to understand the biological basis for monotropism and how it connects to so many other theories that explain autism so well: the Intense World Theory of Henry and Kamila Markram; predictive processing accounts, like Van de Cruys’ HIPPEA and Lawson, Rees and Friston’s aberrant precision theory; and Lisa Feldman Barrett’s theory of constructed emotion.
Now I write and research where that lived experience meets the science: attention, prediction, emotion and the biology of overwhelm. It has changed how I parent and how I practice medicine.
I’m glad you found your way here. Let’s explore together.