AZ: Paula, you've described yourself as a "non-speaking (at times) autistic."
Yes. I think the phrase "non-speaking at times" captures my experience and also that of others who do have speech capabilities but can't always access them. I could also say "partially speaking" or "intermittent speaker." Just because one can speak at times does not mean speech is a reliable form of communication for that person. Also, when a person can speak part of the time, others may not notice they are having trouble speaking. I have sometimes not been able to speak and other people just thought I was "being quiet" or did not have anything to say; that dates back to childhood.
AZ: Why did you make a video of yourself not speaking?
I made the video because we need to change ideas about "high-functioning" and "low-functioning" autistics. Not being able to speak is equated with "low-functioning." A constellation of characteristics are said to be true exclusively of "LF" people, such as self-injurious behavior, toileting difficulties, and not being able to speak or having limited speech, while "HF" people are said to have another set of characteristics, also fairly stereotypical, such as being "geniuses" who are good at computer programming and lack empathy.
These binary divisions don't address the wide variety and range of characteristics of autistic people and paint a limited picture of individual autistics, many of whom defy (not necessarily on purpose!) the expectations surrounding their "end" of the autism spectrum. I have always known I can't speak on an entirely predictable basis, but the conversations about non-verbal people assume that I have a different experience when in fact it's not so different at all. I will talk a bit later about the very thought-provoking responses I have had to my initial posts and your interview with me published on Emma's Hope Book. The comments and questions demonstrate that we are still in the initial stages of understanding the links between speech production, language, thought and ultimately, communication.
AZ: Can you talk about how and why you sometimes are unable to speak?
I can't say I speak most of the time, since most of my waking hours are not spent talking. I showed on my video even when I am alone I frequently can't talk. I don't need to talk at those times, but I am very aware that if I were suddenly presented with a situation in which I needed to talk, I would not be able to. I am, however, usually able to make what some autistics have called "speech sounds," which means that I can say something even if it is not exactly what I wanted to say.
I have several reasons for not being able to speak at any given time. I distinguish between not being able to talk at all and having trouble with word finding, which does not make me lose speech but can have some interesting results when I find a word that is not the right one! I can go in and out of speech several times during the course of a day.
The following list includes reasons for my not being able to talk at times. These are not in any particular order: sensory overload, being tired, reading or seeing something disturbing, thinking more in visual images than in words, trying to talk when other people are talking too fast and not taking turns, which I'd like to add is not limited to the autism spectrum, although a lot of literature exists about teaching us to take turns. Some of that teaching is necessary, but I think it should be introduced to non-autistics as well!
AZ: Are there other things that make speaking difficult?
Yes. I have big chunks of time when I don't talk much at all because I am mostly alone, like when my son spends the weekend with his dad or during the day when he is in school and I am doing writing work. After a weekend spent primarily not talking, I am not used to it and have trouble getting started again. It does not take more than half a day of not talking before I need to urge myself to take it up again. It's the inertia of not doing it; plus, I have to remind myself, sometimes consciously, of how to move my muscles (mouth, lips, larynx) and intentionally will myself to speak, which does not always work. Sometimes my son will ask me "Mommy, are you having a hard time talking?" and if I manage to say "Yes," I am able to start talking again, although I can have a hard time formulating sentences and finding words for a while.
AZ: Of all the items on the list, which ones affect you the most?
The thing that will stop me cold, suddenly switching from being able to speak to not being able to utter a word, is seeing, reading or hearing something that is distressing to me. For example, I write indexes for non-fiction books. Some of them have very graphic descriptions of things like genocide or war. I did my "make myself talk experiment" on a day when I was using voice recognition software to do data entry for a book that had 10 chapters of very harrowing material. Since I am a visual thinker, not only was I reading the book, but also seeing it in my mind, like an awful movie that I did not want to watch. I found myself typing instead of dictating, and realized I had been doing so for maybe half an hour. I said to myself, "Why did I switch to typing?! I don't want to be typing!" and my experiment was underway. I spent the next two hours trying to make myself talk, with no success. I was online at the time, so was typing to people telling them about the experiment. Some of them were a bit concerned that I was trying to force myself to talk when I couldn't, but I needed to find out if I would be able to talk if I tried really hard.
The answer to my question came after two hours, in the form of a small squeak. That's the one sound I could make after all that trying. I had two realizations as I finally ended my experiment. The first was that it reminded me of when I had an epidural for a procedure and tried (yet another!) experiment to see if I could wiggle my toe. The doctor was annoyed with me and told me I was actually wasting physical energy I would need to recover from the procedure. I had the same feeling of exhaustion from trying to make myself speak. The other was that maybe I should carry an autism card with me in case I was at the scene of something upsetting, like an accident or crime, and could not talk to first responders. Some things that I find troubling and that stop me from being able to talk are not that dramatic. It can be someone saying something that I didn't expect them to say (not limited to "bad" things) anything unexpected or surprising.
AZ: What are your earliest experiences of not being able to speak?
When I was a child, there were many times when I could not speak. I think very early on, I was not very aware that I could not talk at times; I simply did not talk when I couldn't. I definitely spent a lot of time looking at things like dust motes in the air and the threads on my blanket and other tiny little interesting things; I have no idea whether anyone tried to talk to me and got a response, how fast a response they got, and whether or not I was conscious that I wanted to say something but couldn't. In later childhood I was more aware that I was both not speaking and wishing I was. I attributed loss of speech to being shy and was angry at myself for not being more brave. I spent a few decades having times of not being able to speak, including the entire day once, and telling myself to "TALK!" but was unable to.
AZ: When did your views regarding your inability to speak at times change?
After I learned about autism, I started thinking more about the reasons I lost speech. I met people who either could not talk at all, could not always reliably access speech (like me!), stuttered (like me, again), had trouble finding words, or had to say other words, circling around until the right one was selected, such as one of the "big words" I used to get teased about in school.
AZ: Does it trouble your son that you can't talk sometimes or have trouble saying what you mean?
My son is very good at talking about things, but I don't assume that he would feel entirely comfortable directly telling me things he doesn't like about me. The things he does say indicate support rather than discomfort. A few times I have been annoyed at myself for stuttering and he says "Mommy! Don't ever be mad at yourself for stuttering!" or, a few times, "Mommy. Stuttering. It's a way of life." I don't not communicate with him, so he does not feel ignored. I use alternative methods of communicating with him, just not talking. I write, point, use my extremely limited repertoire of ASL signs. I once was writing to him about what to wear to church and he wrote back "Yes, mother dearest!" He (as is true of most people I write to) matches my communication mode and writes back. I have written to him (and to others) "You don't have to write to me; I can hear you!" He has noticed and told me that when he comes back from visiting his dad I "seem different." We have talked about his coming back as a transition point -- the house is suddenly noisier and definitely "talkier." I have often said that my child talks to think, so we are quite different in that way. I am working on what would make the transition from "kid gone" to "kid in the house" an easier one for both of us.
AZ: People who do not have difficulty speaking may have trouble understanding how someone might be able to speak in one situation and then not able to in another. Can you talk more about this?
Some abilities are not there every single time a person wants to access them. This is true for all people, but for an autistic person, these fluctuations in abilities and access to abilities might be more pronounced. Think of your favorite sports team and player. Some games are not so good; at other times the team really does well. But hitting a home run is not an essential life skill. When it comes to anything considered really basic, like being able to talk, a sense of mystery surrounds the topic, when a person can do it one time and not another. I maintain that it's not that different than anything else, but it is more noticeable and pronounced when it's something that is expected of everyone and when one is able to do that expected thing most of the time.
This interview has been broken into two parts. Stay tuned for part two.
Ariane Zurcher can be found on her blog: Emma's Hope Book.
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