Wednesday, September 26, 2012

A Video Explanation From a Nonspeaking (at times) Autistic

Paula C Durbin-Westby

I am not a completely nonspeaking Autistic, of course. Many people have seen me speak and some do not even know that I lose speech at times. My loss of speech is temporary, and can last a few seconds to a few hours or the good part of a day. Sometimes it really is the good part of the day, as I often find talking to be exhausting and it's nice to not have to do it, even if it is because I temporarily can't do it.

The following short video clip is part of what is going to be a longer video. I have about 5 or 6 of the segments made, but need to get to a much faster Internet connection to upload them, and need some more time to edit it all into one video. Here's for starters. This one was made recently, when I was not able to speak.

For me, not being able to speak does not always coincide with "social anxiety." I was at home, with only the dogs around. No social anxiety. I also was a bit tired all day because I had insomnia the night before, which made me less likely to be able to talk. I only have so much energy. Various things precipitate my not being able to speak: being tired, being overloaded, trying to talk when other people are talking too fast over me, reading or seeing something disturbing, thinking more in visual images than in words. Or, in the case of yesterday, because I was not speaking to anyone but working at the computer, I was "not used to talking anymore" and so had trouble getting started again. It does not take more than half a day of not talking for whatever reason before I need to sort of urge myself to take it up again.

Not being able to speak is very much like, and perhaps exactly like, having an epidural and not being able to wiggle your toe because you are numb from the waist down. I had an epidural once. I tried to wiggle my toe. I tried a lot. It was an experiment! A doctor saw me and said "Cut it out!"

"Cut what out?"

"You're trying to wiggle your toe." (How could he tell?!)

He said that attempting to wiggle my toe was making all the nerves fire that led from my brain to my toe, only nothing was going to happen. He explained that I was wasting precious physical energy that I would need for recovery (kidney stone procedure). About five years ago I tried another experiment -- to talk when I could not. I tried to force myself -- mind over matter! -- and had that same feeling. It's like the nerves that go from my brain to my mouth have disconnected, temporarily.

Regarding the analogy to an epidural. The analogy is more than a simple comparison. The epidural kept me from being able to wiggle my toe, of course, even though all the neurons were firing (although I was having fun trying until the doctor sort of yelled at me). I felt physically exhausted, even though nothing had moved! And, the day I did the two-hour experiment to try to make myself talk, I felt that same feeling of physical exhaustion and thought "I have had this experience before..." and remembered the epidural episode. Probably the process is not exactly the same, but for me (and this might not apply to anyone else, but probably does for some Autistics and others with communication disabilities), it was the same experience and feeling, trying to do something I could not physically do, and being exhausted from trying. During the time I was doing the two-hour "trying to talk" experiment, I was perfectly able (of course!) to write to people and say "Hey, I am trying to make myself talk! This is hard!", with some people writing back, concerned that I should just wait until I started talking again. I had to explain to them that I was doing an experiment on purpose. :) After two hours, I emitted a squeak. I realized that no one, including me, would be able to interpret a squeak, although they might recognize that I was trying to communicate something. It was then that I decided to carry an autism card with me, in case something happened like being the witness to a crime or overloaded in the airport and not able to speak. I also carry writing materials. I don't have any AAC device, yet, and a lot of time it's easy to write, but you can see for yourself how long it takes!

I will write more in the coming few days and weeks. I have been wanting to make one of these for a long time but I had to have a time when I could not talk and I wanted to make a video and I remembered to do it and I was not having a bad hair day. ;)

(One clarification: At the part when the text says "I guess I should try harder" and then I say "That makes me sad," I don't mean sad about not speaking. I mean sad about people saying "Oh, you should just try harder" about things that people can't do, or can't do as easily as others, and especially when children with disabilities hear that.)



(In general there is mostly silence, sort of white noise in the background most of the time. The scratching/scritching sounds are me writing with a black magic marker on sheets of paper.) First sheet of paper:

OK, right now? I am not able to talk. I am going to try a little experiment. Let's see if I can make myself talk."

Then it shows me trying to talk. I am really trying to even move my mouth but I am not able to do it much. So then I write a note (scritching sounds). I am smiling while I am writing this. Then I try once more to make some sounds

"I can't even move my mouth! I thought I would do that...." (means I thought I would be able to move my mouth and get started on talking.) Then I am smiling while I write the next one:

"I am probably not trying hard enough."

But then, that makes me start to look sad, on the video. I write another piece of paper

"That was supposed to be a joke, but it makes me sad. :( "

Then I add to that: "Especially for KIDS." And I do not look very happy at all.

My last piece of paper says: "OK, this is SO not working. ttyl. (Type to ya later.)

Then I smile a little bit and wave goodbye.

A version of this essay was previously posted at