IntroductionWhen I had to have surgery recently, I also had to write a brief explanatory letter to explain autism and medical background to the surgeon and others who would be dealing with me after surgery. It was a hair-tearing-out experience to try to get organized enough to write it, I wrote some of these things in on the page in pen, and I did not cover everything (the potential for doctor-related flashbacks was notably absent). But it fit on one page, and the surgeon told me he wished all of his patients would write a letter like this before surgery. I am putting a slightly modified (for privacy and clarity) version on the web. Anything in [square brackets], such as [insert name here], goes over the real name of something or someone in the original document.
A version of the following letter was photocopied and put in my chart. Partly as a result of the letter, this was my easiest hospital stay ever, with the exception of a couple of women at the end who did not appear to have read it and who presumably got a lecture from their boss. I am putting it on the web so that people who find it difficult to write letters of this nature might know where to start. The LetterMy name is [insert name here]. I receive services from the [name of center] Regional Center. My service coordinator is [insert name here]. His phone number is (xxx)xxx-xxxx. My main in-home support worker is [insert name here]. Her number is below under emergency numbers. My general doctor is [insert name here]. Her phone number is (xxx)xxx-xxxx. My surgeon is [insert name here]. His phone number is (xxx)xxx-xxxx. He is the one who told me to come to the emergency room if I still had severe pain after taking the maximum dose of the Vicodin he prescribed. He prescribed it for pain that we think is related to a 2-centimeter gallstone he found recently. I have autism, a developmental disability that can affect communication, sensory input, thinking, and movement, and I do not have reliable communicative speech. I use a keyboard to communicate at all times, and need my keyboard accessible to me at all times. If I say something with my mouth and type the opposite on my keyboard, believe what is on the keyboard. If I say something with my mouth that is destructive, treat it like a vocal tic the same as you would if I had Tourette's syndrome. Because I have difficulty processing, remembering, and responding to information, I prefer to have someone I know with me at all times, to remember things for me and to help me communicate. Please tell me what you're doing before you do it, because that helps me process information. My body language and other aspects of communication can be counterintuitive to someone who is not familiar with me or with autism. I use a wheelchair part-time because of movement and stamina problems that sometimes crop up for autistic people during adolescence for unknown reasons. I wear dark glasses sometimes to prevent sensory overload and migraines (especially under fluorescent lights) and help me process visual information better. I take the following medications:
I AM ALLERGIC TO HALDOL, PROLIXIN, PENICILLIN. (AND BAND-AIDS -- PAPER-TAPE WORKS FINE THOUGH.) If you have the need to give me any phenothiazine or other neuroleptic drug, please be aware that I have had life-threatening reactions. Watch for jaw clenching shut, tongue swelling, or throat closing, and give Cogentin or something else to stop this reaction immediately, or I will die. Do not use these kinds of drugs for psychiatric or behavioral reasons; only give them for medical reasons. I am at a high risk for tardive dyskinesia after having been on them four years, and I also had a tendency toward extreme reactions to begin with. I have had dangerous drops in blood pressure and/or increases in heart rate as a result of certain medications. Please keep an eye on these things if I'm incapacitated and unable to tell you what's going on. I have also had problems with medications lowering my seizure threshold and causing seizures. (I have a suspected complex-partial seizure disorder, but some medications caused atonic and myoclonic seizures. I had a myoclonic seizure Tuesday night from Vicodin, and have also had migraines.) KEEP ME ALIVE AT ALL COSTS. I have a notarized protective medical decisions document that you can photocopy for your files, and it includes durable power of attorney. Because [herbal medication] is an herbal drug and not everyone knows the guidelines around it, I'll mention here that the official guidelines for surgery and medications are not to take [herbal medication] for 48 hours beforehand. It can interact with other drugs. Please look up its interaction with a drug before giving me that drug (within whatever amount of time is relevant since I have last taken [herbal medication]). I know it can interact with sedating drugs, and I think it might interact with blood-thinning drugs. Please be very careful. If it all relevant, I am also prone to constipation and have had blockages of that nature before, as a result of medications, so please take precautions/be aware of that, if necessary. Emergency telephone numbers:
Copyright © A M Baggs, 2004 |
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