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 today, 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 5 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.)
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TRANSCRIPT:
(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.
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Landon Bryce at ThAutcast covers this post here.
YouTube link here.
This blog entry is also featured at the Thinking Person's Guide to Autism. You can comment here, at the YouTube site, or at TPGA, if you would like to.
Ariane Zurcher did an interview with me on this topic at Emma's Hope Book.
Another interview with Ariane Zurcher, which will be in two parts:
Non-Speaking (at Times) Autistic Provides Insight Into Communication Differences, Part I
Non-Speaking (at Times) Autistic Provides Insight Into Communication Differences,
Part II
Thought on September 27: My various levels of "functioning" boil down to this some days. And, in most of the areas in which I "function," not being able to speak is "BAD." It's scary to put this out there, because part of my thinks "Oh, no one will ever hire me again, and the people I *do* work for (and do good work) will get rid of me because they will think that if I can't talk I can't think (even though I am doing perfectly good work for them!)
Oh, Paula. This is so powerful. I could see your half-smile, thinking, well, here, let me just try this. Then after "not trying (sarcasm)," I could see the sadness. And knowing how that makes *you* feel, an adult who *knows* it's a joke, oh... the pain it must cause so many children.
ReplyDeleteImportant topic Paula thanks for covering it
ReplyDeleteVery powerful. Very enlightening. Very profound. Thank you for sharing. I would say you are a significant pioneer in the field of understanding autism. Ya' made my day.
ReplyDeleteJacks Dad, you just made my day, too. :)
DeleteThank you. This is important. http://thautcast.com/drupal5/content/trying-talk
ReplyDeleteThank you for covering this, Landon. I love the images you are using for this topic lately.
DeleteI regularly have "IM ONLY" days at my job at Intel. Never thought this to be out of the ordinary and my boss/coworkers always supported it. it is just how I flow.
ReplyDeleteDid you have a discussion with co-workers, or did they just accept it without questioning, or did you ask for accommodations? That's neat that you get to do that!
DeleteThank you. I'm autistic and lose speech in a couple of ways, and even though I know other people who lose speech, I've never come across someone who's managed to phrase how it feels.
ReplyDeleteThank you. I am really happy that I seem to have been able to capture what this is like for a lot of people.
DeleteThank you. Will share as widely as possible, both on FB/Twitter and more importantly with M's teaching/support team.
ReplyDeletePhenomenal. Thank you for sharing this. This is so important.
ReplyDeleteI appreciate this deeply, Paula. I think the sometimes speechless feature of autism is mysterious to many, and you have illustrated this so clearly.
ReplyDeleteThis comment has been removed by the author.
ReplyDeleteSo, it's not "the ability to speak is equivalent to wiggling your toe," it's the ability to speak when one cannot physically do it is equivalent, or parallel, or something, to not being able to do something else (wiggling toe) that one typically can do. And typically, I can speak somewhat, although it is NOT at all like "typical speech production," even when I am sounding a bit typical (which some people think I never quite manage).
Delete(Entered what I wrote as part of the main article.)
DeleteWatching you not talk took me back to the times i can't talk which do not happen often. When i get highly emotional I either can not talk or i can only repeat a word or phrase. ( like a stuck record) It is as if my thinking and speech parts of my brain are no longer connected. I just feel and it is not translated into words. I could make sounds but that would do no good. I don't know if i could write. I have never tried that. It does not feel under my control.
ReplyDeleteI don't know if it is anything like this for you but i thought i would tell you to see if it is similar or not.
I posted this on You tube but I wasn't sure if it went on.
Nora, thank you for posting this. I think what you are writing is very similar to what I experience. Not completely sure, but what you write seems to make sense, and the sounds that aren't words- often I can't make anything more than little sounds, and I usually don't bother to try.
DeleteThank you for making this video & writing the accompanying blog post, Paula. <3
ReplyDeleteWonderful that you are bringing more attention to this, Paula! It's a reality that so many of us regularly face. Thank you! <3
ReplyDeleteHi – Will you please post a link to your important Blog at The Autism Community at vorts.com? Our members will really appreciate it.
ReplyDeleteMembers include: Those living with Autism, parents of children with autism, their families, friends, support groups, etc.
It's easy to do, just cut and paste the link and it automatically links back to your website. You can also add Articles, News, Photos, and Videos if you like.
Email me if you need any help or would like me to do it for you. I hope you consider sharing with us.
Please feel free to share as often and as much as you like.
The Autism Community: http://www.vorts.com/autism/
Thanks,
James Kaufman, Editor
Thank you so much for this post...it is moving as well as fascinating, and to me shows great courage. May I ask: how would you compare your experience of these nonspeaking periods to the feeling one has while asleep and dreaming a scene in which one wants to speak or cry out, but cannot?
ReplyDeleteHi Joel, Thank you for your comment. My experience of these nonspeaking times are just that I can't talk. There is nothing surreal or dreamlike about it at all. It's about like if you couldn't speak because you had laryngitis. The video looks a bit different because I was TRYING really hard to talk! Usually I don't bother trying unless I really have to because I am in a meeting or something. Usually I can skirt around it and I mostly get my speech back in a few minutes. But, other than not speaking, I feel about the same as usual, except if I am more tired or have more sensory overload (some of the reasons for not speaking). This is a good question. Would you mind if I posted the question as a status update on my Facebook page, so I can talk about it there with more people?
DeleteJoel, the analogy to a sore throat is not the best, but it does explain that when I can't talk, everything else is pretty much the same (other than sensory overload or being overwhelmed or tired). It's more like the epidural thing. With the epidural, I could not move the lower half of my body, but I could still talk and interact with the medical people.
DeleteI love the experiments. That's how science is done. Make a guess, test it, and publish the results, repeat.
ReplyDeleteAs a fluent person, i probably wouldn't understand any of it, except that i have mild fear of heights. Six years of daily exposure to heights in a safe setting have made this a non-issue. One day i noticed to my surprise that i could lean on the glass railing and look down over 100 feet with only mild feedback. But i have friends with more severe versions, and there are things they simply can't do, like walk down stairs.
It feels emotionally based. And, it's obviously total nonsense. I have taken precautions, planned it out, i'm totally safe. There is no reason to avoid looking down as that won't change anything. Stress, sleep deprivation make it worse.
I'm not saying that your speaking issue is a phobia (my guess is that it isn't), just that it might have things in common. For example, i don't find being exposed to heights exhausting, just debilitating, and a bit humorous. Not everything neatly matches up.
I find that i can prepare myself for a heights event by relaxing. I really can't describe what it is that i do. But, take a deep breath, shrug your shoulders and let them drop, and imagine that a huge weight you've been carrying has been lifted. If i have the hiccups, i can relax a bit below my stomach, and they're gone. Try it. Then see if talking is easier. Try it without the camera. The camera is stressful for me, anyway.
Given any two people, one finds task A easier, and the other finds task B easier. There often are alternative ways to learn things that help. For example, if you think visually but are relatively poor at arithmetic, perhaps the Japanese abacus (soroban) will help. It's not simply how hard you work; it's also stumbling into the right technique for you. There are lots of people who have difficulty speaking, but can sing. This is fairly common for people who have suffered a stroke.
Stephen, I have a fear of heights. And, I also went skydiving. I am still not sure why, but I ended up with about 615 jumps, or maybe 625, wish I could remember. But, every time I had to go up a 4 ft. ladder to hand a tool to someone, I had white knuckles! No, it's not a phobia, because I have those too, like.... SPIDERS. And, for a short time, I had a fear of driving over bridges, which I had never had. I had that one starting July 4 one year, two days after I was in a car accident, even though the accident was nowhere near a bridge. I guess I drove over the bridge too soon after the accident (within 48 hours) and somehow my mind made a connection between accidents and bridges. It finally "wore off" after about 2 years. The last time I drove over my "scariest bridge," I couldn't remember if I had crossed the bridge yet or not (I also get lost easily)! Stumbling into the right technique is a really important concept, I think! I would like to learn more about people who can sing but not speak. I think I will try taking the breath thing- because it's an experiment! But, since it's not fear-based I am not sure. There's only one way to find out!, as I often say.
ReplyDeleteGood links:
ReplyDeletehttp://mamabegood.blogspot.com/2012/12/use-your-words-non-verbal-speech-and-aac.html
http://emmashopebook.com/2012/12/06/eeeeeeeeeeeee/
http://emmashopebook.com/2012/11/26/excitement-impatience-and-waiting/
http://emmashopebook.com/2012/11/19/the-problem-with-scientific-studies-and-typing-with-emma/