What follows is an interview I conducted this morning with Emma about stimming. Emma patiently tried to explain to me what stimming is like for her.
A: Is it okay to ask you some questions about stimming? (For those of you unfamiliar with the term, stimming is a repetitive action or verbal output.)
E: Stimming is fun. And I am in calming and obedient service to those who are in charge.
A: Are you being facetious when you write “obedient service to those who are in charge?”
E: (Smiles) Yes. (Laughs) The stim is a great way to roam around feelings that are too intense. You treat me like a baby.”
A: Are you speaking specifically to me or are you using a more universal “you”?
E: All people out there. Bloated feelings despair and anger me. Almost all feel too much to manage and I cannot be present all the time.
A: Can you tell me more about stimming?
E: I am not able to write about stimming because words cannot describe it.
A: Can I ask some specific questions about it though?
E: Yes. (Leans over and gives me kisses on my cheek.)
A: Is stimming ever not fun?
E: Yes. When feelings are too extreme, even a good stim won’t help.
A: Is there anything that will help?
E: A lot of patience and love. Acknowledge my attempts to self-care and do not cause me more pain by trying to change or control me.
A: What happens if someone stops or tries to stop you from stimming?
E: It makes thick feelings worse.
A: Do you ever feel stuck in repetitive loops?
E: Yes, but so do others who are not autistic, but they are called passionate and are looked up to instead of looked down on.
A: Yesterday you wrote: “Raging beasts of pain masquerading as stims cause many to misunderstand.” Can you elaborate on that?
E: Stims alter the persistent anxiety of life so that I am able to function as well as I am.
A: So you weren’t saying stims are painful as much as that they help you cope with the pain and anxiety you often feel?
E: It is impossible to describe to all who have not experienced a lot of distress. Day after day I am scared of people’s opinions about me because they can harm me with their beliefs about my lack of intelligence. People treat those they believe stupid, very badly. I am not stupid.
A: I know you aren’t! You are the smartest person I have ever met!!
E: (Smiles and squeezes my arm.) I am intelligent and cannot speak with the same brilliant words that are in my mind.
The timer goes off.
E: Now we are all done!
A: Yes we are! Thank you Emma for your patience with me and helping me understand.
Addendum: I asked Emma just now if I could ask her one more question. She told me that I could.
A: Do you like the word “stimming” ?
E: No.
A: Is there another word you’d prefer?
E: Yes, but words are not as meaningful to me as they are to those who talk all the time.
A: If you could choose any word other than stimming, what would it be?
“People do not believe me” was what Emma wrote on our last day in Texas last week. Prior to that sentence she wrote a message to Richard and me that left me in tears because it expressed her gratitude for believing in her and for fighting for her right to be thought competent and intelligent.
One day my daughter will be able to write what she feels and believes independently, of this I have absolutely no doubt. When that day occurs, she can choose what and when she wants to write such things, but for now, I will keep this post to my own views and opinions.
As many of you know, it was not so very long ago that I was one of those people Emma was referring to. I have a great many feelings as I write that sentence, but as I trace back what was going on and why I didn’t or couldn’t or wouldn’t believe in all, that it turns out, she is capable of, it wasn’t that I didn’t want to, it wasn’t that I didn’t hope, it was that everything I saw, heard and thought was muddied by what I read and was told and was confirmed by what I thought I was seeing.
When I met people face to face (as opposed to reading their words or hearing of them) like Barb Rentenbach, Tracy Thresher, Larry Bissonnette, Amy Sequenzia, young Nick, Joey, Jamie, Jenn, Mark, Tito, Sarah and countless others who do not speak, or whose spoken utterances are not in keeping with what they write, I began to question what I once believed. It was during a presentation Barb Rentenbach and Lois Prislovsky gave at the Autcom Conference in the fall of 2012 that I thought, okay, maybe, just maybe, my daughter is not saying what she intends to say. At that same conference I went to another presentation with Larry Bissonnette, Tracy Thresher, Pascal Cheng, Harvey Lavoy where a young boy, younger than Emma, typed on his iPad extremely insightful comments pertaining to the topic and again I thought, maybe, just maybe my daughter is like that boy and I just have to find a way to help her communicate.
It was the first time I’d really considered the disconnect between speech and intent. It was the first time I began to wonder whether all this energy being placed on output of spoken language was the best way to help her communicate. You see, up until then I bought into the idea that if we could just get her to talk, we would be giving her the tools she needed to say what she thought, that the words that came out of her mouth were indicative of what was going on in her mind. We even would give her spoken prompts, say a sentence and have her repeat it, as though if she could just repeat the words, even though they were dictated and not her words, they would make sense and the connections would be made. And when they didn’t seem to build to a critical mass, instead of questioning the push for spoken output, I questioned what was going on in her brain.
This was a huge mistake, it turns out. Huge. But I didn’t understand. I didn’t see the error in this thinking. I could not believe. Not yet.
And then I met these wonderfully resilient, creative, intelligent people who did not communicate through spoken words, but instead wrote beautifully, poetic words that put together made equally gorgeous sentences that spoke of insights and wisdom and hope and strength and courage and compassion and I was blown away. At first I thought each person was an anomaly. I told myself they couldn’t possibly be representative of many, they had to be one in a million… and then I met more and more and eventually, even I could no longer doubt what I was seeing and witnessing, this critical mass… this unleashing of hundreds of voices, each unique and yet all…. all were communicating what was in their minds and many spoke of that disconnect that occurred between a thought and what then came out of their mouths.
“my mouth constantly talks different from what I think…” Emma wrote.
“People do not believe me.”
“Yes,” I told her, “but that is changing… that will change.”
It is my promise to my daughter. I will not stop writing until it is no longer necessary to say these things.
You’ve described yourself as a “nonspeaking (at times) Autistic.
“Yes, I think the phrase “nonspeaking at times” captures my experience, and also that of others who do have speech capabilities but can’t always access them. Because one can speak at times does not mean that speech is a reliable form of communication for that person. Also, when someone can speak some of the time, others may not notice that 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.”
Why did you make a video of you not speaking?
“I made the video because we need to change some of the 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 of only “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 a regular basis, but the conversations about “nonverbal” people assume that I have a different experience when in fact it’s not so different at all.”
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 wanted to say. I have a number of 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 has some of my reasons for not being able to talk. 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 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!”
Are there other things that stop you from being able to talk?
Another thing that will stop me from being able to talk is to have big chunks of time where I am not talking because I am mostly alone, like when my son spends the weekend with his dad. 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, 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 bit.”
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 disturbing. I write indexes for nonfiction 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 ten chapters of very disturbing material. I used VRS a lot at that time to save my wrists and fingers for playing the organ. Since I am a visual thinker, not only was I reading it, 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. My answer was provided after two hours, in the form of a small squeak. That’s the only sound I could make after all that trying. I had two realizations as I finally ended my experiment, still not able to talk except for that squeak. 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 got “mad” at 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 thing I realized is that maybe I should be carrying 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 disturbing and thus making me not able to talk are not that dramatic. It can be someone saying something that I did not expect them to say (not limited to “bad” things) or anything unexpected or surprising.”
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 thread on my blanket and other tiny little interesting things; I have no idea if 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 being that way. I spent quite a few decades having times of not being able to speak, including the entire day once, and being angry at myself for not being more “brave.” Reasons include some social ones, such as being afraid of another person for whatever reason, feeling “on the spot,” having a particularly anxious day, people interrupting me. I think people were not aware they were interrupting me, as my speech was so tentative. Other reasons include being tired, having more visual thinking and not the accompanying language-based thinking, since my thinking is visual with an audio soundtrack and the soundtrack sometimes drops out for whatever reason. Sometimes the lighting or the color green will render me speechless. I love green! It is very mesmerizing! It often makes me unable or disinterested in speaking, especially the green of a large field of grass. Eeeeeeee!!!!!”
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.
One of my ongoing word-choice problems is “French toast.” Early in the morning, I can’t think of “French toast,” for some reason. I ask my son if he wants “Um, um, um, um, …. uh… (then I draw a square shape in the air, since I can see the French toast clearly in my mind) … um, square things!…. French toast!” Since my son now knows that “square things” means French toast, sometimes we just stop at “square things” and he says yes or he will say, “Mommy, I want square things!” and we laugh and I make the French toast.”
Does it trouble your son that you can’t talk at times, or have trouble saying what you mean?
“My son is very good at talking about things he doesn’t like, 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 ways of communicating with him, just not talking. I write, point, use some of 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.”
For people who do not have difficulty speaking, they 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. If I don’t play the organ almost every day, it’s almost like I forget how to play it. That’s why I always practice on Saturday night and Sunday morning before church. There is no way I can go in there cold and play like I want to. Think of something like delivering a presentation. For most typical people, there will be good days and bad days, presentations you wish you could do over, and days when you were really “on your game.” Or, think of your favorite sports team and player. Some games are not so good; other games the team really does well. But playing the organ or hitting a home run is not an essential life skill (ballplayers and organists feel free to disagree!). But 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 anything else, but is more noticeable and pronounced when it’s something that is expected of everyone, and when one can do that “expected thing” most of the time. Maybe for some of us talking is an extreme sport, in the sense of having to really work, practice, try hard, take risks, and think consciously about what we are doing, whereas for some people the ability to talk is very natural and not even a conscious effort.”
Talk about the idea of language and thinking.
“I have read more than one author who opines that without language there is no thought. Nothing could be farther from the truth. Language includes both written and spoken words, as well as picture-based communication systems like PECS. Not talking (and also not writing) does not equate with “not being able to think,” “being lost in an unknown world” or anything other than specifically not being able to talk. For some people it could mean a lack of focus on “the present moment” (how many people are fully present in each moment anyway?!) or not being able to think in words, which is another one of my reasons for not talking. But it is not, generally speaking, accurate to assume that because someone can’t talk, they can’t think. You wouldn’t look at someone who has a tracheostomy tube and go “Oh wow. That person can’t think!”
What is it like when you’re unable to speak while in public and are expected to?
“It’s a bit nerve-wracking, but only in situations where people do not know me well and are expecting that I can speak like a non-autistic person. I try to anticipate what I will need to be able to communicate at those times but I can’t always build in my own supports. When I am with friends, it’s no big deal if I can’t talk or can’t talk much. In work situations it’s more difficult for me to feel calm about it. Unfortunately this expectation is not limited to people who don’t know much about disabilities, so that I have had to really struggle at autism-related events where there really aren’t accommodations for Autistic ways of communicating. It’s an ongoing process for nondisabled people to learn about communication differences and to anticipate them so that Autistics and other people with communication disabilities aren’t doing most or all of the work to create our own accommodations.”
How do people react to you?
Really, I mostly don’t get reactions, because often the times that I can’t speak coincide with the other person continuing to talk, maybe because they think I don’t have anything to say, or that they are like “Well, if she’s not going to talk, I will!” I do get all kinds of reactions, from total acceptance to “you could if you wanted to- try harder” kind of thing that made me feel sad when I was making the video. Sometimes people don’t believe me when I say (in speech or writing!) that I have trouble talking. I have to be very clear that I mean not being able to talk at all. I have learned that “trouble talking” might mean not saying the right thing, or stage fright, and “I can’t talk right now” can mean “I am too busy to deal with you” rather than that I literally an unable to speak with words coming out of my mouth! I have had a few mixups when people did not know I meant “I can’t talk right now” very literally. Sometimes people just don’t quite believe me and think I am making it up. I am not sure why they would think I would go to that much trouble! There are also people who have never heard me stutter, who think that I don’t, even though I tell them I do. They are going to get treated to another video in a few weeks! I was finally able to capture myself stuttering at a time when I also had the webcam with me.”
Are there things that help you speak after a period of not speaking?
“I mostly just have to wait. I don’t particularly want to talk a lot, but I need to. It’s just one of those things that is expected, and it is expected that if I can do it some of the time, I can do it all of the time. It might seem that someone who can speak but loses speech at times would want to find ways to prevent speech loss, but I often welcome not being able to talk. It gives me a break from the exhausting task of speech production. My idea of the perfect conversation and this is ideal for a number of my Autistic friends, too, is two laptops or mobile devices or text-based equipment, but we can be in the same room together writing to one another. I don’t get a lot of this because I live in a rural area and most of the people I write to are long-distance. Some friends locally are very accepting but we don’t have any alternative setup other than me scribbling on paper. I also get way overloaded by hearing other people talk, as it challenges my auditory processing abilities and I can only take so much talking. If other people, whether or not they can speak, would type to me, I think I could get a lot more accomplished with the interaction with that person. Or, at least I think I could. If writing is not that person’s strongest form of communication, it will be a limit for that person. We should not be expected to always accommodate “talkers” and not the other way around. But it does take extra effort on my part because people can’t tell just from looking at me that I am a person who sometimes can’t access speech.
Ideally, we could take turns using each person’s communication strengths and weaknesses, assuming we are able to do that much. Of course, sometimes it just won’t work.”
Emma's Hope Book 