Why can't I just ask for what I want?

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Verbal communication is my bane. I'm adept on the keyboard, I have plenty of drawn out time to think of the right word, phrase it the right way to communicate my point.

Then get me talking, and it's all, "crap! That's not what I meant to say."

Case and point. I'm anxious about developing a type of liver cancer called cholangiocarcinoma (CC). It's nasty, painful, nearly impossible to treat and nearly always fatal. I have an autoimmune disease that puts me at very high risk, around 3% per year, for developing CC.

It's one of the hardest cancers to detect. The two "cheap" ways don't work for me because of the complexity of the rest of my diseases. I have high liver-function tests b/c of my main disease, and a co-morbid liver disorder causes my 'triple-test' cancer antigen markers to always show that I have cancer, even though I don't. The next method of testing is a newly developed and expensive (ie, $6,000+) radiology exam.

Did I mention I'm anxious about it? I'm not quite to the point of needing therapy or Paxil, but I do lose sleep and boy-oh-boy, sometimes I really, really want a beer. I don't drink, for obvious reasons.

So I want more frequent screening. If the cancer is caught early, they can surgically remove it with ~ok~ survival odds. If it's caught late, ur dead. Period. It can go from non-symptomatic to fatal in less than 6 months.

If I was NT, I could call up my doc and say, "Hey doc, I want to screen for CC more often. How can we do that?" Since I'm aspie, I know those are not the words that will come out of my mouth. So I write those exact words down, I'm going to read them to my doc, like a script.

But noooo. When I talk to the doc, what do I say?? "Um hi. Yeah. I k-k-called. This is Zedition. Um, w-w-one of your patients. Um, how can we, um. Is it ok if we can. Um, can we t-t-test for ko, k-k-cholangio k-k-carcinoma more often?" /facepalm FML.


It's not like I can't speak. Ask me about coding SAS or Excel VBA, and I'll talk your ear off. Want to know the difference between cohort vintage and survival models for estimating cash flows, I'll lecture on those topics as smooth as Milton Friedman. Put me in front of a room full of highly trained MBA's and tell me to present a business plan I wrote plus a Q&A session, no problemo. Ask me if I like strawberry or chocolate better, and I'll respond like a half-wit with my facial nerves paralyzed with Novocaine. In my comfort zone of my areas of expertise, I'm fine. At the same time, I'm incapable of clearly telling people what I want, bizarre, but true.

Does anybody know of a good work-around for this? Is there any good way to clearly and concisely ask for things that you want or need?

Does the doc know you are Aspie?

Seems the simple answer is to write him/her a letter. You've admitted to being good at it. Play to your strength.

I hear you. It can even be hard for me to admit to myself what I want. I used to think that this is a result of being gay, and being in the closet for many years. Once I started being honest with myself about my ASD, I realized that this is really because my brain has trouble processing things that matter to me a lot. I think it happens for three reasons:

1) When I want something badly, talking about it, sometimes even thinking about it directly, can be become very over-stimulating. Talking about an important issue can make me shut down and seem more "autistic" than I usually do, including being less verbal.

2) Because I know how hard it is to communicate clearly with NT people, I have a hard time trusting that I will do a good job of it. I don't trust myself to communicate clearly, so it becomes very hard to try.

3) I have a great deal of anxiety regarding things that worry me, and the anxiety can prevent me from being to think about them clearly and formulate a good plan for saying what I need to say.

What works for me in personal life is to figure out what I need to say about an important issue when I'm alone, practice saying it to myself, then waiting until an opportunity comes up to say it. I wonder if practicing would help you. I also wonder if you could email your doctor or drop off a note-- this is an important issue, so it seems like a good idea to use the written word, if that's what works best for you.

Thanks for writing about this-- it's something that makes me feel really isolated and sad, sometimes. And I hope that you both get the extra testing you need, and always get the results you want.

I've written letters to express myself more clearly--this is a good way to make sure you don't forget to communicate something.

I understand completely, and I even understand why writing and sending a letter might almost seem just as impossible ... and especially when dealing with a doctor who sees ever-how-many patients per day and with only a few minutes actually scheduled for each.

Your letter *might* be your best bet here, and keep it simple if you do decide to write and send one. Do not tell the doctor (or even bother reminding him of) any related facts and/or details he already knows. Just write and say you would like to have quarterly testing for "X" in order to avoid ever even getting close to the six-month threshold for any possibility of effective treatment ...

... and if that does not get the job done, you will likely have to source and pay for the extra tests on your own.