I just had a conversation with a friend. I am completely in awe of the fact that I’ve had a conversation at all. It has been exceedingly difficult to carry on conversations with people lately.
I think people have some illusion in their heads that I am just like a non-disabled person in my head except that I type rather than talk. Certainly that’s an area in which I can pass to some extent at some points in time, because I usually type in the sorts of sentences that most people consider normal.
Guess what? The inside of my head is weird too. I may use the same language you do when I type, but I take a different route to get there. I identify strongly with people — whether they type, speak, both, or neither — whose internal routes look like mine. I don’t identify as much with people who might move vaguely like me and type to communicate but whose brains work in far more typical ways than mine does when it comes to the process of language and communication. This is a major flaw in the way people divide us up into speaking and non-speaking as if that’s the major difference between us (and for that matter as if those categories are fixed, well-defined, and static, I used to be a nominally “speaking person” for instance).
Also guess what? Treating a person equally is not the same as treating them identically. If you have to pretend my brain works just like yours in order to see me as a person, you have a problem. And you are creating a problem for me: people who do this will almost invariably be incapable of seeing the extreme inequality they are perpetuating between us. Making wheelchair users climb stairs is not “equality,” and neither is pretending my brain works like yours if it doesn’t. To do this sort of thing to someone is not a compliment, it’s a form of erasure, you’re ignoring who they are and you’re putting barriers in their path that don’t have to be there.
If you read aloud what I am saying as I am typing, I can’t communicate.
If you finish my sentences for me, I can’t communicate.
If you talk over me, I can’t communicate.
If you rush me, I can’t communicate.
If you interrupt every time I pause to come up with words, I can’t communicate.
And sometimes if you get really close and try to stare at the words I’m typing, I can’t communicate (that’s usually on a speech-output device, and it’s situation-dependent whether that’s a problem or not).
This is not about me being a control-freak who wants to dominate conversations. This is not about me stepping on your hierarchical toes wherever they might be. This is not about some sort of social hierarchy I’m trying to climb. This is about basic access to communication, and people like me are already working really hard, usually on a full-time basis, to communicate with people whose brains work in ways totally different than ours, we just want some reciprocity here.
If you are a non-disabled speaking person, then I can’t shut my ears and ignore you the same way you can shut your eyes or turn away and ignore what’s on the screen of my keyboard. I can’t turn the volume up high enough to shout over you if you decide to shout at me. This is an actual imbalance in power when it comes to communication situations and if you routinely abuse it I will rapidly lose respect for you.
And it takes me effort to come up with words. You might not see the effort. You might look at how fast I type and the sorts of words I use and claim that there is no effort. This does not erase it, and it does not erase what happens when you decide to throw wrenches into my ability to talk to you right and left on the assumption that I’m really not cognitively disabled and I can handle it. The ability to spew words on memorized topics also does not mean anything about other topics (or about the constancy of this ability).
My friend was talking about how when other people besides her talk to me, they usually seem impatient, like they can’t wait the extra few seconds or minutes it takes for me to get words out. She said they don’t seem to understand that there’s no rushing this stuff. I’ve seen people do the same thing to her. She has the same trouble with language I do (stemming, as she pointed out, from the same fairly important way of processing the world we share, so not something we see as a bad thing in and of itself) but she talks and people never give her time to come up with words. People act like she’s done, or should be done, the moment she pauses, just like they do with me. (And they don’t always notice my pauses because it’s all done in typing.)
At any rate, it was great to have a conversation with someone, but boy has it been hard to get anyone else to slow down long enough to have a real conversation these days. I have a number of medical problems going on, and I was not even able to coherently explain them to a doctor on the phone.
There are a number of things that need to be done, and when staff are here it’s hard to talk to them because they’re not as familiar as my friend and they are busy a lot of the time and it’s hard to get the time for a conversation even if they’re the ones who are better than average at talking to me. Lots of stuff isn’t getting done. Lots of communication is not happening. Which is scary because I depend on these people to do things for me and I can’t tell them what needs doing, and there’s nobody else around to do it but me.
Then there’s the fact that most people — in general — seem to have far less accurate receptive language than they think they do, so even if I communicate something in perfect and precise language, it gets garbled by the time it gets to whoever needs to know it. And that has been happening a lot too.
And the fact that often if I tell someone something, that may be the only time for months I can say it (even if it’s urgent), and need to rely on them to write it down or otherwise find a way to remember it because I might not be able to say it again for ages.
These communication problems don’t stop because a person acquires speech, typing, or both. Being able to form sentences on particular topics doesn’t mean what a lot of people think it means. My friend had to spend over half an hour with me today trying to work out what my body was doing wrong. Most people, including most medical professionals, aren’t willing to take that kind of time, but as she pointed out you can’t rush this kind of cognition. There’s a few things I do rapidly, but a lot of things I have a Barliman Butterbur orientation towards, I do it slowly but I can “see through a brick wall in time”.
And time is what most people seem totally unwilling to give me. It often seems in life in general (not just communication situations) like everyone is going around too fast to keep up with, and then getting mad that people like me can’t keep up, treating us like we’re just slowing them down on purpose to fulfill some weird internal need or something, or like we don’t belong there at all mucking up their perfect frenetically-paced world. If you push me for speed, you’ll get shutdown at best and a meltdown at worst, and either way the more pressure you put on for speed the slower I’ll do something. This is not defiance or passive aggression. It’s an inability to work under certain kinds of pressure. It’s a clogging of that little tiny hole at the front of my mind that I have to push vast amounts of information in and out through. There is no speeding up the rate at which I think and respond to things.
And if people would just take a tiny bit more time, these things would be much less of an issue.
Ballastexistenz 
This sounds very familiar.
Just today I had a conversation with someone in which I momentarily paused to process what they were saying. About 15 seconds into the pause, the other person asked me if I was upset, and then pointed out that sometimes I seem to “get quiet” when I’m upset. And at that point I realized that I am generally *not* upset when I get quiet — it’s that being expected/forced/encouraged to respond before I’m ready throws me off to the extent that I start getting upset.
And things just start getting worse because if I attempt to communicate before I’m ready, I can start coming out with stuff that utilizes vocabulary related to the situation at hand, but that does not actually represent any actual processing of the situation. In short, I will say sentences that sound like “something” but that really don’t mean much…and then that can lead to another problem in which I then try to explain that I didn’t really mean what the other person thought I meant, after which they will argue that since they “understood” what I was saying, I must have really meant it. Argh. In any case, I definitely understand the need for time, regardless of the communication context.
That sounds frustrating. Something I do, if I know I’m going to need to talk about something, but I also know that there’s a chance (sometimes a very high chance) that I won’t be able to talk about it when the time comes, or that I won’t be able to express myself very clearly or at all, is that I try to write it down ahead of time when I’m able to think well enough to do so. That way I can either hand it to them (though I’ve found people are a lot less happy about being handed a piece of paper instead of being talked to. You’d think they’d be happy that I took the time to make sure I’d be able to communicate with them, knowing ahead of time that it would probably be a problem for me.), or try to read it to them, or if I’m feeling particularly articulate, just glance at it now and then to jog my memory.
There have been plenty of instances where we needed to see a doctor or a teacher or somebody and it was urgent, but while waiting outside their office we realised we’d forgotten how to speak again, so we had to leave. It’s very frustrating when this happens. But sometimes writing things down ahead of time has helped us a little bit.
My first thought when I read some of this post was that I almost wished I could take it and post it in the office of every manager at my job who’s ever given me a hard time about the speed at which I do things.
“If you push me for speed, you’ll get shutdown at best and a meltdown at worst, and either way the more pressure you put on for speed, the slower I’ll do something.” This describes me perfectly, and people have commented on it. Those are the times when I wish there was some way to actually show them the neurological “glitch” in my processing so they’d shut up and leave me to do my job the best way I know how.
“There is no speeding up the rate at which I think and respond to things.” Perfectly stated, and totally relevant to my own situation, too. It’s as a college counselor once put it to me many years ago when I was having issues with the effect this processing speed situation was having on my academic progress: “You just have to accept slow processing as part of your disability…” Yes, but the real problem comes when OTHER PEOPLE fail miserably at that same acceptance. I know I’m in trouble when they start talking to me like they think my slowness is intentional, or when they get all confused because I “seem to be highly intelligent, so why do things take so long”. Sometimes I feel like giving up on them ever really understanding well enough so I can be my own version of a productive citizen…
Yeah, that’s the other thing: I don’t really, internally, almost ever, have a problem with the speed at which I do things. I have a problem when the speed at which I do things comes into conflict with the speed at which I’m expected to do them. Some people think I must be really frustrated if it’s slow or difficult to do something, but in general if I’m not under time pressure and have no urgent desire to get something done right now, I’m not frustrated by the time it takes. (I don’t even perceive time in a standard way so I don’t necessarily perceive the slowness when it’s there.)
“I almost wished I could take it and post it in the office of every manager at my job”
Or to all the people I’ve known who that thought it was entertaining when I spoke one word at a time. Or who take it as some sort of compliment when it’s obvious that I’m trying to form an reply very carefully, because they take the need for a carefully crafted response as proof of the brilliance of their argument. Tripping me up in language is not an accomplish, getting me comfortable enough to where the language flows freely is!
Not to mention the people who hang up on me all the time and then hang up on the relay service too when I try to use that.
And the doctor who once actually walked out of the room when I was talking to him because he (and he explicitly said this) viewed it as wasting his time to wait for me to say anything.
And the lady who worked in the disability field who told someone I had an overly-developed sense of entitlement because I actually expected people to regard me as a participant in discussions.
Then there’s the fact that most people — in general — seem to have far less accurate receptive language than they think they do, so even if I communicate something in perfect and precise language, it gets garbled by the time it gets to whoever needs to know it. And that has been happening a lot too.
I see this all the time in people around me. People who would bristle immediately if you suggested they had any kind of language problem, who nonetheless entirely misunderstand precise and straightforward language directed at them. In fact it’s so common that the person who doesn’t do this at least some of the time is extremely rare. Which makes me worry that I’m probably doing it too. I’m neurotypical, but interact regularly with people who are not in several different directions. If I’m mishearing or misinterpreting, then I’m doing my friends a serious disservice.
I tend to pause in the wrong places when I’m talking, usually mid sentence and usually whilst I’m trying to think of what to say, or I’m just gathering myself. At any rate it leads plenty of people to interrupt me because they register a pause and presume I’ve stopped. However, if they actually paid attention to the words they would realise I’ve not got to the end of the sentence and am therefore still speaking. It’s very annoying and the whole “give me time” sums up very much what I feel about being interrupted.
This is my absolute favorite post I have ever read here. I still find it incredible how many people honestly believe that I do this intentionally. I have been accused of pausing or speaking very slowly in order to “get attention” when in many cases, it is the very existence of this “attention” that exacerbates the slowness. Also, it is assumed I have nothing to contribute to a conversation, since clearly if I did, I would have come in “on cue”. When I use cues that are reasonable to me, such as raising my hand to indicate I would like to speak, people laugh or shake their heads or become otherwise clearly irritated. Then, of course, I am the one to blame for the silence that follows.
I am constantly learning from you. Thank you.
The pace of life is really crazy and I’m sure it must be very stressful. All of the “If you” statements in your post apply to a lot of NT people too. It is so frustrating for me to think I’m having a real conversation with someone, when by their actions of finishing my sentences and talking before I finish it’s clear that they really just want me to hurry up so they can move on to the next thing.
I’m not sure today’s hectic pace is so good for NTs either. A few years ago I read an interesting book by Dr. Peter Whybrow called American Mania: When More is Not Enough. Dr. Whybrow “shows how human biology is ill equipped to cope with the demands of the 24/7, global, information-saturated, rapid-fire culture we not only have created, but that we have come to crave” (from the book website, http://www.peterwhybrow.com/books/americanmania/ ). I am thankful every day for the lessons that my autistic son has taught me in slowing down and savoring the seemingly small everyday miracles.
When I used to stammer or stutter badly, I hardly do so now, I didn’t like it when people finished my sentences for me.
Not finishing a person’s sentence for them, talking over them, rushing them, and interrupting them every time they pause, is simply being considerate and courteous.
Life today is too stressed and rushed. The movement for slow campaigns to reduce the current hectic pace of modern life and encourages people to take time. There are slow cities and slow food, and a book “In Praise of Slow”. I don’t know the name of the author.
Wow Amanda (and others), is this ever familiar! Especially when I’m apprachign overload, I have quite a lot of communication difficulties. So I might hav edifficulty coming up with words and then repeat the fist part of the sentece several times as to not lose track of it (I use speech). Fortunatley, people don’t interrupt all that often, but even the question “finish your sentence please” which is meant as an encouragement, causes me to lose track of what I was trying to communicate. And yet when I stay quiet for a while, people tend to ge tupset because I seem to be ignoring them (I’ve been trying to find non-verbal ways of showing that I don’t ignore them, but havent’been able to yet).
Another difficulty that you highlight is with speaking (or typing) relatively clear sentences that yet werent’what you were meanign to say. Usually this happens when I’m asked to finish my sentence, cause I’m distracted and start with a new sentence all over again, that may not have as much relevance as the one I had wanted to say.
By the way, I also seem to have some difficulty speaking (and typing, unfortunately) “on purpose”, ie. like I knwow what I want to say (or write) but when I get to actually saying/writing it, I can’t find the words. IN fact, I have a few posts on my blog that I wish I’d been able to write just a little while earlier, eithe rin Dutch (my native language) or in English (so I could translate) so that I could’ve shown them to the staff, who have a habit of encouraging writing as a means of communication (which is a good thing), but have hte mistaken assumption that my typing is free from communication difficulties (an dindeed there are fewer difficulties, but they are still there).
In addition to plain old impatience and misunderstanding, I think the issue for a lot of people who may rush you is fear of silence. A lot of people seem to feel the need to fill silences in conversations, afraid that the silence will drag out and it will become “awkward.” I used to have this urge when talking to a friend of mine who has more silence in her speech than most, but over the years I’ve learned to just savor a nice friendly silence. We are both NT, so our silences are usually between sentences when there is nothing to say. Luckily for me (and my clients) I became comfortable with this before I ever started working with people who need extra time to speak. But I can imagine, if my childhood self had been around them, I would have probably caused a lot of frustration and hurt feelings with my “helpful” sentence completions and conversation-jumps.
Astrid,
One thing I do when I’m in the middle of a sentence and I’ve forgotten a word is wave my hands around in a circular motion, as if I’m trying to stir the word up from the bottom of a muddy river. This may be a somewhat idiosyncratic gesture, but at least my friends and family tend to “get it” that I’m still working on the phrase. However, they tend to jump in with suggestions, which might make things more confusing.
I’m printing this out and putting it up in my cubicle. Sometimes I think that you are actually explaining deep rooted problems in neurotypical people, also. Maybe it is just more noticeable or elevated in the autistic person but you really, really get things spot on. You had me in tears. Those that just have a way with words talk so much and so loud, others just eventually quiet down and the loud ones think they must be the leaders. I’m so glad that on the Internet, the only way to turn up the volume in a blog is to speak the truth and actually have people listen, really listen, because they are reading it all.
Just today someone “corrected” me and told me to “use language.” The person then repeated “Use LANGUAGE.” It made no sense to me as I was talking, with my MOUTH, and using LANGUAGE. I guess that’s what it was: I speak English. I still don’t know what the person meant and really don’t care to ask. This is someone I just recently told that I am autistic. Maybe the person thinks saying “Use LANGUAGE” is the way to get an autistic person to speak faster/more accurately/say what they WANT to hear etc. As a result, I did not say much of ANYTHING for about an hour (and then I left) whereas preceeding that, I was doing OK, at least to my way of thinking.
The whole episode seemed very odd to me, considering that I just recently disclosed being autistic. I suppose the more people I tell, the more odd experiences I will have. On the other hand the person also asked everyone in the room to introduce themselves by name, which I think was done for my benefit since I have difficulty recognizing faces. So it’s not like someone was “out to get me.” Probably just does not know what to do with the new info about me.
People generally do talk over me, interupt me, finish my sentences, suggest alternatives to what I just said, correct me, rush me etc. I am generally a speaking person, although I’ve started to learn just how much I do NOT speak at times. I used to think I was being “shy” but it’s actually temporary loss of the ability to speak.
I learned something from your post, which I had not thought of before, which is not to read over someone’s shoulder when they are typing. I don’t know that I’ve done that but I have kind of looked very hard at someone’s keyboard just because I had never seen one before. I suppose curiosity can be annoying. Maybe it would be like you looking in my mouth every time I open it to talk!
=) found your entry through the disability blog carnival. you hit lots of proverbial nails on the head in this entry. very well put indeed! thank you =)
I get a weird reaction to my speaking sometimes, and have taken to thinking of a few friends as ‘translators’ because of it. I can say something, get a reaction that is completely wrong, have one of these friends say it (sometimes even word-for-word), and get the desired response. Still haven’t figured that out.
I also do the odd pauses, even when writing. I use ellipses (or just three dots) to indicate where my thinking and my typing weren’t in sync. Of course, I don’t do this in formal writing, but sometimes I have to go back and clean it up.