I Am Autistic and Was Abused as an Emergency Room Patient
In May 2009, I had a violent meltdown that lead to law enforcement and an ambulance ride to the ER. Upon arrival I was greeted by a screaming baby, which my ears could not tolerate. I covered my ears and began screaming in distress, and immediately I witnessed the ignorance, prejudice and abuse of my junior high and high school past crashing down on me in adulthood.
Several people were in the room asking questions like, “What’s your name?” “What meds are you on?” “Stop screaming, you’re scaring the lady in the bed next to you!” On top of this, the baby was still screaming, which I was reminded “isn’t its fault!” in a derogatory yell. I reminded the nurse through tears that I have autism and sensory processing disorder and cannot help my response, either. That brought a threat, “If you can’t be quiet, then we’ll have to give you Haldol. You can’t take Haldol? (I am allergic) I thought you didn’t want to talk to me. Why are you talking to me now?” When I refused to take it, she went to get security.
I picked up the phone and called my mom, remembering to dial 9 first, as I am familiar with hospitals. When my mom talked to the nurse, the security guards left. I reminded her it is her duty to know the basics of autism and not my responsibility to educate her.
After four hours, with my mom holding my ears each time the baby cried, the case worker came and spoke with me, made out a customary wellness plan, and then I was discharged.
How could this situation been handled differently?
If you are a nurse or any other member of the medical community, you know the first rule of medicine is do no harm where there is no harm. De-escalate the situation! Don’t make a bad situation worse by being sarcastic or yelling. Find out why your patient is in distress. Do what you can to make them as comfortable as possible (even if that means simply not being a jerk). Take your patient seriously. If they tell you they are allergic to a particular medication, listen.
The nurse I dealt with was reported to her supervisor. I can’t stress enough the importance of having an advocate to speak for you if you are unable. This goes for everyone. Someone in your family should have a list of your meds, your doctors’ phone numbers and a copy of your living will if you have one. This person should be a primary contact like a parent, grown child or spouse, and ideally he or she should live near you.
Lastly, report abuse of anyone on the spectrum. Don’t settle for just an apology. I’ve been thrown out of another hospital because they couldn’t keep me from using the chain of command. I chose to report the abuse I witnessed and personally experienced as a patient.
If you are interested in learning more about law enforcement training efforts to help autistic people, here is a police training video. If you need to report abuse, Google who to contact in your area. In Illinois, you can report abuse anonymously here. You can also report abuse here.
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