Over the past few weeks, I have had multiple encounters that have indicated that somehow my choice whether to disclose my neurology in some way has affected these such interactions. Here is one of them; the rest will follow in other posts.
At a hospital, during a life-threatening emergent situation, my treating doctor felt it was appropriate to berate me for a half an hour regarding two complaints regarding my care under her supervision. Approaching shutdown, I asked for a break in our discussion. She did not stop, nor did the patient advocate indicate that she should. The outcome was a full-on meltdown where I went non-verbal, rocking, fists-clenched and leaving nail indents in my palms. The doctor continued insisting I needed to make choices. Verbally. I stutter-shouted “I am autistic!” At which time, she approached me, began to softly stroke my shoulder. I again shouted, “DO NOT TOUCH ME!”
As I was using items in my recovery bag, including my Willebrand brush, essential oils and a picture of my family to ground myself, I could hear her talking to my friend. “If I had only known she was autistic, I would have assigned her a sitter. I would have approached her care with more…” More what? Compassion? Attention to detail? Less berating?
(Please note: it is in my medical records at that hospital (where I received ALL of my medical care for THREE years while living in that area) that I’m diagnosed with Autism Spectrum Disorder- it’s second on the list of my history. And, I told the nurse upon intake that I was taking one of my medications to help me with “transitional depression and anxiety associated with my autism.” I know that's what I said, word for freakin’ word. Because that is the phrase I worked really hard to come up with to explain why I’m on that medication. I say it exactly the same way. Every. Single. Time.)
Additionally, I heard every word of their sidebar conversation. I know my sweet, bedside friend initiated the conversation and moved the doctor further and further away from my bed purposely. She was getting the doctor off my back the best way she could. But during my regulation and recovery period, I heard EVERY word. I heard the doctor talking about her experience with autism. I heard her apologize that she “didn’t know.” I heard it all. I remember it all, considering I was still very unwell.
But here’s my point: in what situation is it appropriate to base a person’s medical care on their self-disclosure of a neuro-development disorder that has nothing to do with the medical emergency? My autism had nothing to do with the fact that my blood pressure had been in the 80’s/50’s with an elevated heart rate of 120+ for most of that day. Nor did it have an effect on the treatment plan for my anemia that was approaching the stage of oxygen deprivation of my organs although the hemorrhaging had stopped.
Is this to say that every time I’m receiving medical care from this point on, every medical professional (nurse, CNA, doctor, orderly…) to enter my presence, I need to introduce myself and follow that with “I’m autistic?”
I mean, I’m not shy about my diagnosis. I’m not ashamed of it and I do share it when I’m being triaged. Or, I bring it up when I’m struggling to understand something. Or, when the doctor asks if there is anything that could further affect the treatment. But, this specialist that came in the ER room that day was one member of a parade of care providers in and out. Especially with me going in and out of being fully conscious.
It all comes down to knowledge and compassion. Or lack of it. I hope that the rise of television shows that are including “outed” autistic people will help many of the neuro-typical population to understand and be educated on autism. Because this type of ignorance not only affected my treatment and mental state that night. It traumatized me while I was going through a medical trauma. And continues to with that doctor’s judgement has me questioning every interaction I have with people in the medical field since then.
Because…one extreme adverse outcome can put my brain in a place to feel unsafe with the people whose job it is to help me be healthy.
So, for now, I suppose… “Hi. Nice to meet you. I’m autistic,” is where I’m at when I’m being seen for a primary care appointment to diagnose a UTI or in the emergency room to be evaluated for a potential blood clot.
But my challenge to you, dear reader…fill in the word “autistic” above with the following words: sad, obsessed with Pokémon, scared of cats, narcissistic, sarcastic, shy, fun, witty…you get the point, I think. Do those affect a person’s medical care? If so, we need to have a further conversation about this.
Which hospital is going to be the first to have a neuro-diversity panel conversation with me?
No comments:
Post a Comment