A recent experience with a medical professional triggered an old response in me: the reminder that I don’t trust neurotypical people. When they are trying to be “kind” or “gentle,” when they imagine that they are communicating in an “appropriate” way or are trying to blunt the edge off some hard truth—I only hear that they are lying to me. And lying doesn’t help me as an autist, not in any way at all.
The specifics of the situation were a medical professional telling me about a positive cancer screening I’d just gotten. I’d received the results several days before by email, and I hadn’t freaked out about them at all. But when the medical professional called and assured me numerous times that it “wasn’t cancer” and insisted that I shouldn’t freak out, it had the opposite effect than was intended. Because I’ve had experience with people telling me that everything was fine (for instance, when my daughter died in utero at 42 weeks pregnancy), I began to suspect that this neurotypical person must be lying to me. And so I began to freak out.
Being “nice” often reads to me as something to be suspicious of. As a child, I learned that people who pretended to be nice to me often had an ulterior motive, such as wanting me to do their homework. Or, much worse, they were being nice so that they could trick me into something to humiliate me. But even as an adult, I am impatient with people who imagine that disguising the truth with buffers of lies is helpful in some way. I’ve been told a thousand times how my way of interacting with others is too blunt and that I need to learn to speak in a more roundabout way, but I still cannot fathom why other people think of this as kind or helpful in any way.
What is far more useful (to me, as an autist) is a discussion of facts. Give me the percentage of false positives, the percentage of pre-cancerous polyps, and the statistics on what the rates of survival on this kind of cancer are. Yes, I find that helpful. I don’t understand why other people would not find it helpful. I don’t want a medical professional to lie to me about the statistics. I just want the facts. And while I’m aware this is strange, I don’t get it. And I don’t know of any way to try to communicate what would help me to medical professionals. Posting “autist” on my chart seems to get entirely the wrong response.
I’m also well aware of the fact that neurotypical people don’t think that they are lying when I feel like they’re lying. Their roundabout style of communication seems normal to them, and me calling it lying sounds ridiculous and exaggerated. Nonetheless, it feels like lying to me, which is not telling the truth, is it not?
Straight talk can be a difficult thing to get. I've found I get the most cooperation with my need for facts, data, and no soothing bedside manner when I specify to my non-white, female primary care provider that I will not accept referrals to specialists who are older white males. I can't tolerate condescension or patronizing attitudes and have managed to avoid a lot of it by asking my PCP to help me by not referring me to male practitioners of my own generation and race.
Makes sense to me to have the stats with a little professional guidance.