I come out of most hospital visits in what feels like shock, and taken off my ADHD meds, which sometimes get replaced with other medications that are intended to stabilize me. And every time, I fight through severe/paradoxical side effects for months while desperately fighting to have my other conditions seen/treated. In these times, all I can do is focus on survival. I can’t process anything that happened… events leading up to the hospital admission, or the trauma experienced while hospitalized. I’m just… stuck, with near-debilitating anxiety, feeling lost and hopeless.

When I am once again treated with my ADHD meds, things begin to improve, but it’s not an immediate thing. What does happen… is those memories start to return. Intrusively. Frequently. Painfully. And the grief-laden anger is almost overwhelming. Regardless of the cause of the episode, the outcome is essentially the same. Loss. It didn’t have to happen again, and the last time had devastating impacts in every area of my life.

And each time it does, my medical trauma compounds. Trauma responses worsen, my nervous system gets more sensitive, and any trust or sense of safety I have in accessing care is shattered again.

I remember the people in the wards with me… I think about some of them often. But I also remember how people with cognitive disabilities (presumably most were autistic) are “managed”. In a way, it made me grateful that they didn’t acknowledge my diagnosis. But it also leaves me with a sense of helplessness, when I feel like they could be experiencing similar medication challenges to mine, and have no way to communicate that.

During a hospital stay in 2020, I saw a person who would later become a significant driver in my efforts at advocacy. At the time, I’d just noticed him being helped to walk down the hallway, or being taken to his room, I hadn’t had any interaction with him. But in late 2021, I came across a news article and was shocked to see his face.

Man in Ottawa Hospital more than 19 months, sedated, restrained and getting sicker

I felt ill. I couldn’t imagine being confined like that. I thought about medication challenges I’d had, and started to read and research more about medications and how autistic people can have more sensitivities and paradoxical reactions on some. I started to reach out to mental health professionals I’d met through social media, and organizations that sought patient engagement (in research, and in patient care), looking to share my experiences. I can’t help him directly… but maybe I can help inform changes in care that benefit others. I’m beyond grateful for the organizations that I’ve engaged since then.

But over the years and hospital stays I’ve seen other things that I’ll never forget… people who were suffering and misunderstood, just wanting to be heard, believed, seen.

Fact: Autistic individuals are more susceptible to trauma and developing PTSD than neurotypicals, and trauma responses/emotional flashbacks, and meltdowns can all be mistaken for mood or personality disorders. They also experience more negative/paradoxical effects and are more sensitive to medications. Yet autism and PTSD (and ADHD, for that matter), and their impact on treatment seem to be largely ignored/dismissed in acute psychiatric care settings I’ve experienced.

I won’t stop trying to change that. For my own sake, and for the sake of those I met/remembered along this journey.