Talking to Doctors

Someone wrote to an online autistim group to say that he was having a hard time communicating effectively with his doctor. I responded:

It sounds like you and I have the same kind of experience when we try to communicate with doctors. I even find the same kind of mis-comprehension happening with my physical therapist, but luckily the results haven't been serious (yet). Even when she understands my words/sentences, my actual meaning doesn't come through the right way to her. Very strange. And I do think she is being as open and sincere as she can be.

With "my" doctor (a young man I have seen three times), the problem is worse because it is more important to me (for very pragmatic reasons) to be able to communicate with the person I depend on for medical care. But it's such a struggle every single time (every sentence, almost) that I usually give up and leave feeling defeated. When the doctor starts out (because of the way the system works) short of time, short of attention, short of knowledge (about the patient in question)....there is no viable basis for the kind of work we (Aspies) require if clear, functional communication is going to happen.

I really am beginning to think that the only way I'll ever achieve minimally satisfactory communication with a doctor is if I can find someone to act as my aide and interpreter. This would not be a small task. It would require the person to spend time getting to understand (from my POV, of course) what the issues are -- the issues of medical concern and the issues of what kind of treatment/response I'm looking for. And the aide and I would have to practice ("role play") how the aide could participate in the communication with the doctor in a way that would keep my POV clear and get all my issues addressed without making me feel like the situation was being taken out of my hands.

My sister used to be able to perform that aide function for me. She could go along with me to the doctor and make sure I didn't walk out at the end of the appointment feeling unheard and misunderstood. But alas, we now live in different countries, different time zones. I'm supposed to be an adult and do stuff like doctor visits on my own.

A couple of ANI (Autism Network International) members, I think, have persuaded medical professionals to allow them to communicate with them in writing during face-to-face appointments (either writing on paper by hand or using a portable keyboard instrument of some kind). Like you, I, too, feel I express myself better in writing than orally, but I dread the kind of struggle I am afraid I'd face if I tried to get "my" doctor to take the time to read.