Yesterday Em was having a tough time. She has been talking about an indoor playground that closed some six years ago, expressing her upset that it’s now a store and asking that we build a new indoor playground exactly like it. We have discussed the idea that places go out of business and that we can’t bring them back, we’ve talked about what is required to build an indoor playground, but that it will not be exactly like the one that closed. We’ve discussed the concept of same and different. We’ve gone over the preliminary steps needed to be taken in creating any sort of space. Joe even thought she might like to build a model playground, complete with running water and electricity, but none of this has helped. She remains very upset. So much so that I began to feel certain her upset was not actually about this specific playground, but that this playground has come to symbolize loss.
“I want playground. I want to build it. Will take out the store and build a different playground has slides and a bouncy castle.”
I explained again that we couldn’t do that. Em then repeated how she wanted to build a playground and then said, “Bertie kitty can’t eat pancakes. Bertie kitty, the animal vet doctor, says no. Might get sick. Bertie kitty died.”
I nodded my head and said, “Bertie was old, Em. He didn’t die from eating pancakes. He died because he was very old.”
“I want to take it out!” Em pulled at the palate expander in her mouth and began to cry.
“I know you do, Em. But we can’t take it out yet. The orthodontist will take it out eventually.”
“Soon. I want to take it out now. I want to build it. I want to build new playground.”
It’s easy for me to get caught up in the literalness of Emma’s words. To get swept up in each upset individually, as it shows itself, veering from the closing of a playground, to the death of my cat, to the desire to have her palate expander removed. If I take each of these concerns separately and at face value, I can quickly become lost in each one. This is something I continually struggle with, not just with my daughter, but in life. I take things pretty literally and often try to compartmentalize each thing so as not to get overwhelmed. So in instances when Emma seems to be racing from one upsetting thought to the next, it isn’t my first thought to look for the common thread. But I am fairly certain I’m correct about my interpretation of what’s going on here. I think Emma is working through a number of difficult concepts that in her mind are all related. The playground closing and being replaced by a store that holds no interest for her, the death of my elderly cat Bertie, whom she loved, and the palate expander that she dislikes and wishes would be removed. I could be wrong, of course, but it seems to me they are all connected. They all fall under the heading of permanence and impermanence, or death.
As Emma learns to communicate better through both typing and verbally, we become better at listening and understanding her, her anxieties are becoming more obvious to us. As her communication skills increase, so does her obsessive compulsiveness, or so it seems to us. It’s entirely possible that Em has always had this degree of anxiety, obsessiveness, coupled with compulsivity, but we are only now becoming aware of just how difficult it is and how often it overwhelms her. Leaping from one upsetting scenario to the next is something I do too, particularly when I am tired. With Emma it’s all about things that are impossible to have, things that are gone and won’t come back or, as is the case with the palate expander, about change, literally physical change as she looses the last of her baby teeth and her permanent teeth appear.
As we continue to support Emma with her typing, we have noticed she is becoming more verbal. As she becomes more verbal she is expressing her anxieties, her concerns, as well as her desire to be heard. The more we listen, the more she has to say. Yesterday as we worked on her typing, I asked, “Em tell me two things you like doing and one thing that’s hard.”
Em typed, with my hand barely touching her forearm, “I like to bounce on the trampoline. I like to bounce on the bouncy castle. It is hard for me to work with mommy. You could help them work with mommy.”
“Thank you for telling me that, Em. Who should help me so it’s easier for you to work with me?”
“Pascal.”
Emma and Pascal take each other’s photographs - April, 2013
One of the things I’ve felt particularly confused by is why my daughter sometimes resists communicating. My thinking has been – why would she resist doing the one thing that will help her get along in this world more than perhaps anything else? The other day, I had a moment of clarity. I came a step closer to “getting it”. And now, I think I understand. Not only do I think I understand, but I am able to identify and relate to that resistance, because, I realized, I do it too! There are a number of things I resist doing, even while knowing that if I just did them I’d feel better and would be able to weather the vicissitudes of daily life a bit better. I’d be happier, calmer, less anxious, and yet knowing this, intellectually understanding that this is true, does not make my resistance any less.
I know being mindful and in the present gives me clarity and a sense of calm, I do not otherwise have. I know this, and yet find it extremely difficult to be completely present for more than moments at a time. My daughter has little problem with this. In fact, Emma is far more comfortable in the moment than anywhere else. I remember when we were inundated with therapists coming and going during those early years of fear and panic. Richard and I used to comment on the irony that Emma was completely present and in the here and now far more easily than we were and yet we were constantly encouraging her to talk about tomorrow or yesterday or any number of other topics that had little to do with NOW. We were pushing her to move away from the bliss of this moment to join us in the fear and anxiety of the non-present moment, all for the sake of the larger picture, which in our minds was to have her join us in our world. Even though our world was fraught with expectations, hopes, dreams, wishes and the inevitable disappointment those things often bring.
We used to joke that if we could bottle what Emma came to naturally we would have no cause for worry. And that really is the crux of most conversations. They are usually not about the here and now. They are almost always about some other time, some other idea, some other person, some other concern that is not now. And yet…
I resist being in the present and Emma resists being pulled out of it. And yet, we non-Autistics continue to insist our world is better, or superior even as many spend thousands of dollars going on spiritual retreats, reading books about meditation and going to workshops to teach us how to “sit”. So the question I am now asking myself is this: Can I find the grey area of encouraging Emma to communicate with me, something that is difficult for her and pulls her from the bliss of now, while giving her plenty of time to be present and just be? And what about my own resistance? Can I learn to meet Emma in her blissful place of now and resist the urge to go off in my mind to somewhere else?
Of course there’s always a danger in interpreting my daughter’s behavior as any one thing. Her resistance, like mine, is probably made up of many things, and this could be just one reason. Or I may have this entirely wrong and her resistance is about something that hasn’t even occurred to me. Or perhaps it isn’t resistance at all and is something else or I may find, next time we type together and when I ask her why, she will tell me something I hadn’t considered. And that’s the beauty of all of this, I can’t and don’t know until she tells me. Until then it’s just speculation and me projecting my stuff onto her. So that’s more for me to be aware of – seeing when and if I do that and understanding that I am.
Henry and I sharing a moment of laughter at Emma’s antics
One of the main questions I had when I began considering facilitated communication for my daughter was whether it was applicable. After all she has some language, she has no problem pointing and is even able to type with her two index fingers. If given sentences to copy she can type them pretty quickly on her own without anyone physically touching her. So why would we even consider supporting her? Wouldn’t that be a step backward? These were my thoughts as I began investigating FC. *Please remember as you read this, I claim no expertise in facilitation, I am very much a beginner and am learning and questioning as I go.
Let me tackle these questions as best I can ~ Why did we consider supporting her typing when she already can type independently and has some language?
Em’s language is unreliable to us. I do not mean this as criticism, but as fact. We (and I am not only including my husband, but all non Autistics who come into contact with her) cannot know that if asked something her verbal answer is what she actually means. She relies a great deal on scripts and we do our best to interpret them, while knowing that we may be entirely wrong in our interpretation. Obviously if Em yells “No!” and then bites herself, we aren’t completely clueless. We understand that she means to say no and is unhappy with whatever it is that she is protesting. But the less obvious communications are not so clear. We do our best, but our best often falls short. I am not one who believes my neurology is superior to my daughter’s. I believe my neurology is greatly enhanced by the hundreds of accommodations I get in life and because our society is set up to help those like me operate in this world with fewer limitations than are available to my daughter. But that is probably a topic better served in a separate post.
When I went to the Autcom Conference this last fall, it was the first time I had witnessed so many of all ages communicating with a facilitator. It was a mind blowing experience. Seriously I felt as though I was on a mind altering drug for two days. Seeing so many communicate in this way was a transformative experience. It opened my eyes to what was possible. It was impossible for me to witness children, young adults, people my age with everything from severe physical challenges to few physical issues, all communicating their thoughts by typing and not ask, could this help my daughter. Some had some language, many had none, others read what they wrote, and still others did not. Some required help isolating their index finger, some had support at the wrist, many had support at their elbow, others were supported with a light touch on their shoulder and still others required no physical support at all. As I watched all these people, as I listened to their words, I kept thinking about my daughter.
Despite my daughter’s language she was not communicating at the level I was witnessing. At a certain point I had to ask myself this question ~ If we gave her the right support, would she not be able to communicate at a more complex level than she currently is? And the answer to that question was, yes. Yes because from a very young age she has demonstrated a level of thinking that is far beyond what she has ever been able to verbalize. I’m going to quickly backtrack to say, our goal for our daughter was always that she be able to express her thoughts verbally. Our thinking was, if we could just get her to speak everything else would fall into place. But I am beginning to realize this goal was limiting her and us in how we helped her. I now feel strongly and believe that speech is not the end goal, though communication is. Giving her the tools to communicate effectively in whatever form that may take has become our new goal. If that enhances her ability to speak, wonderful, it will be one more thing she can use to navigate life.
FC is all about resistance. This idea of resistance was the single biggest misconception I held about FC. I couldn’t understand why I would offer resistance when what I wanted was for her to type her thoughts. It seemed counterintuitive. But just as my daughter prefers verbal scripts, she also tries to type those same verbal scripts if given the opportunity. Resistance provides her with several things, it does not allow her to impulsively type just any key, it doesn’t allow her to type out favorite default scripts and it gives her time to think and then type the thought that is in her head. When done well she is able to communicate complex and sophisticated thoughts. I am not suggesting that she is suddenly writing sonnets or quoting Shakespeare, but she is capable of typing extremely self-reflective and introspective ideas which go way beyond anything she has ever been able to verbalize. When she is “in the zone” and by that I mean has a facilitator who knows what they’re doing and is giving her the proper amount of resistance her entire demeanor changes. She becomes intensely focused and there is a kind of calm that overtakes her. It is as though she is tuning everything else out. It is just her, the screen and the words she is typing.
I hope I’ve done her experience of this process justice, but until she decides to describe it herself, my interpretations will have to do.
*Judy Endow made a very insightful comment below and so I am amending the above sentence as it is an assumption that I cannot know to be true. That sentence should be:
I hope I’ve done her experience of this process justice, but until we are better able to facilitate our daughter so that she can describe the process in her own words, my interpretations will have to do.
For those of you who rely on FC to communicate I’d love to hear if my description of what I’m witnessing resonates and is at all accurate or reflective of your experience when typing.
Last night we returned from the Institute on Communication and Inclusion’s facilitated communication conference in Syracuse. I cannot quote Em on this blog any more. Going forward I will write about my reactions, thoughts and words. And while I feel a little mixed about this decision because I think her words are proving to be far more eloquent and astonishing than mine, it is the only decision I can make given what she is saying and what we are learning. Having said that, the conference was all I’d hoped for and so much more. We met many wonderful families, other children Em’s age and younger, adults, young adults and teenagers, all of whom communicate through FC and are in varying stages of becoming independent. A number of the presenters had gained full independence and had gone on to get their undergraduate and graduate degrees.
For those of you unfamiliar with FC, it is a method of support, which provides resistance to the typer, in Em’s case to help her slow down and not impulsively hit whatever key is closest, or to perseverate or write some of her default scripts. A facilitator is never to direct the typer’s hand, but is there to offer emotional, physical and, as needed, verbal support, to help establish a rhythm so that the typer is free to communicate in ways they are not able to verbally. Ideally this support is then faded over time allowing the typer to communicate independently. Learning to facilitate properly and well is not simple nor is it easy, though it looks ridiculously easy when watching someone who’s been doing it for more than a few decades. It requires patience, practice, confidence (in both yourself and in the person you are facilitating) and calm.
As a non Autistic, fully speaking person who can both speak and communicate through writing, relatively easily, it is often difficult to understand what the process is like for those who cannot. It is easy to view someone who is non-speaking, who has fine and gross motor challenges, who may script or make vocal, seemingly nonsensical utterances, as a person who is the sum total of what we see. If that same person then displays insights, a brilliance and clarity regarding their surroundings, thoughts and life, a sensitivity and intensity of feelings for themselves and those around them, our limited non autistic brains have trouble making sense of what may seem to us to be a disconnect. However it is imperative that we not remain locked inside our limiting assumptions. It is imperative that we open our minds to the idea that not only is there far more going on than we might assume, but that all human beings have the desire to communicate and connect with other human beings, despite what we think or how we interpret another’s behavior.
I cannot do the conference justice in a single post or even several posts. Far too much was covered, there were too many moments of discovery, insights, moments when it all began to make sense and fall into place, but I will say this – if there was one thing, just one thing I wish someone had said to me and I could have done when we first got Em’s diagnosis, it would have been this, ”Believe in her intelligence.” I am not talking about wishful thinking or believing in fairy tales and magical potions or waking up to a child who is able to verbally express themselves with power and poignancy. I am talking about believing in her ability to understand and articulate far more than I was able to see or acknowledge and finding ways to help her do so. This is a glitch in my specific neurology, not hers. This is the detrimental glitch in most non Autistic, speaking people’s neurology. We have a terrible time believing that without language there can be a deep, complex and layered thinking process that is often poetic and nothing short of mind blowing. Without suspending our entrenched beliefs about what we think is and isn’t possible our children will have a difficult, if not impossible, time “proving” us wrong because they will not be given the tools they need to do so.
I do not feel particularly articulate at the moment and I’m extremely emotional. I am holding so many opposing emotions at once. I am angry, furious at how autism and autistic people are depicted and talked about. I am in a state of near apoplectic outrage at the presumptions that currently exist regarding this underserved, largely segregated population. I feel furious with the limited thinking, the prejudice, the hatred and cruelty routinely shown to autistic people. And yet, I am overwhelmed with gratitude and love for those who continue to speak out, who continue to fight the ingrained beliefs so that my daughter and those who are right behind her might have a better life than they currently have.
Um no. No. Not at all. Nothing typical about it. This. This is why I don’t envy any other family, this is what I treasure about MY family. This is exactly why, this conversation, this seemingly common, innocent, no-big-deal conversation…. yeah. Because this conversation has never been uttered before until this morning. And weirdly Nic and I were talking just five minutes before, while the three of us had breakfast about the importance and magic of being present. We were discussing how this moment, right now, this second will never be repeated. We may have moments like it, but this one? Nope. Never again.
And as we were talking about all of this, Nic interrupted me and we had the above conversation, the one I’ve just transcribed. It may seem un-noteworthy to many of you, you may be thinking, so what? Or who cares? But to me, this conversation that other families have, perhaps on a daily basis and don’t think twice about, they are little nuggets of pure gold because these moments with my children are gifts, each one of them, pure gifts that I am so lucky to have.
In Buddhism there is emphasis on being present and practice and it isn’t easy. It’s a simple concept, but definitely not easy for most of us to actually do. And yet, when I am able to really show up for this moment the joy is beyond description.
I will leave you with one more snippet.
Later this morning as Em and I walked toward her school, we stopped at a red light. As we waited she linked her arm through mine. Not a single word was exchanged. We waited, a mother and daughter, side by side for the light to turn green and once it did we made our way to the entrance to her school. As Emma entered the gymnasium where the children and teachers were waiting, one of Em’s classmates called out, “It’s Emma. Yay! It’s Emma. LOOK! Look! It’s a cupcake, I love cupcakes!”
And Em looked back at me and grinned before running to greet her friend.
In Judy Endow’s book, Paper Words, she describes the process she went through to communicate. She writes about the “bridge pieces” or information storage system she experienced, “Then world-people might see the little bridge pieces stuck onto the sides of all these stone islands.
“Bridge pieces just hanging there serving no purpose (other than to underline the fact that a bridge was meant to be there, but isn’t) little bridge pieces going nowhere with gray -matter g a p s where the bridges should be.
“Perhaps then the world-people might come to understand that even though she may know all the info that’s needed to answer their question or to produce a reciprocal response to keep up with her part of their conversation, sometimes it takes a lot of her time to jump in a boat and float around in that gray-matter space of her mind floating in the g a p s trying to find all the right islands of stone that might hold any relevant data pertinent to the subject at hand.
“Sometimes it’s a cumbersome task to access information in this manner and at other times it is downright impossible.”
Judy’s book is incredible on so many levels and I hope she will forgive me for butchering the placement of her words, because my blog would not allow me to replicate what she does in her book. However, I will try to explain. She literally breaks the sentences apart in meaningful ways. There are the words she’s writing, but there is another layer of meaning to be gleaned from her words, and that is how and where she places the words on the page. As an example of the above quote, these words are placed in such a way as to create islands of words, separate from each other and yet the meaning overlaps, but the placement of the words (the islands) do not. This requires the reader to visually leap from one island of words to the next, just as she describes her thought process must do. It is a wild experience to read in this way and further illustrates her struggles with “bridge pieces” (information storage), “gaps” (information processing), and canoe transportation (information retrieval).
In her chapter entitled,”People Are Not Interchangeable” Judy Endow writes, “…meaning that if PERSON ONE has a conversation with her today …then tomorrow she can’t speak her response to PERSON TWO even if both persons belong to the very same group sometimes when she knows what she’s talking about and the person to whom she is speaking acts like he doesn’t understand her the first thing she does is to repeat herself saying her exact words over but if the person still acts confused she begins to wonder… this may be one of those times when she needs to be talking to PERSON ONE but because both of them are in the same group it somehow makes perfect sense to her to be talking to PERSON TWO but this kind of mistake rarely works out so she must always remember the rule that she made for herself: ”People are NOT interchangeable.”
Again I couldn’t duplicate the arrangement of these words on this blog, an arrangement that serves to visually recreate the issues she describes having.
As I read Judy’s powerful book it was impossible not to reflect on my daughter. How often has she said something that I did not/ could not understand? How many times has she spoken to me about something or someone who I didn’t understand the context of, but that she seemed to know and understood me to know as well. Only I did not. How many times did I think – what am I missing? And now I wonder, was she speaking to me, assuming I was PERSON TWO, while PERSON ONE might well have known exactly what she was referring to? How many times have I been PERSON ONE and then explained to PERSON TWO what I thought was meant?
It happens often.
Emma doing one of her favorite “finger mazes” – 2013
I’m impatient. I know this about myself. Impatience serves me to do a great many things. It propels me to take action rather than not. It makes me push harder, try harder. My impatience, which usually begins with tremendous optimism can descend rapidly into disappointment and discouragement. Fortunately I am also fiercely determined and dogged in my reluctance to give up which helps mitigate some of my impatience or maybe it just makes me confused. 😕
However, there are a great many things that are not helped by impatience, things like learning a language, learning to type or learning almost any new skill. These are things that take time, practice and patience. So I have to recognize this and continue despite my impatience. This comes up over and over as I work with my daughter. But in working with her, I’ve also come to recognize something else and that is my expectations. Huge expectations, coupled with impatience can do harm. I see that. I’ve been very aware of how it affects me, but how does it affect Em?
I am learning how to support Em in her communication. For example we will read a story together, such as a book Emma chose recently entitled, Who Pooped in the Park? The story details a family outing where the two kids are upset when they don’t see a great many wild animals on their hike, but learn to identify what animals live in the area by the markings they leave. During our session together I asked Em, “What were some of the animals the family identified? One animal starts with the letter b.” Emma then typed, “There was a bear and ciyoty and a deer.” Other than misspelling coyote, this was a terrific answer and correct. We went on to discuss another name for animal poop, which is scat and that all living things produce “waste” of some kind. After our session was over, Richard asked, “So how did it go?”
“It was fine,” I answered.
“It sounded great!” Richard said with enthusiasm.
“Yeah, I guess,” I replied. And then I had a tiny flicker of realization. I was feeling disappointed in our session. I was hoping for some brilliant, philosophical insight. I was hoping that we would have a conversation that blew my mind and when I realized that, I also realized that my desire, my expectations, my impatience had caused me to not fully take in how terrific our session had been. It also made me see how my response may have felt to Emma. Here she was working hard, doing something that does not come easily and doing it really, really well, yet I had not responded with the kind of unbridled enthusiasm I would have hoped for had our roles been reversed.
During our next session we talked about her birthday, which she is very excited about, and the party and various events we’ve planned for her. I tried hard to be aware of my response to what she was typing. I became increasingly aware of my expectations as they arose and did my best to silently acknowledge them before responding with genuine enthusiasm and appreciation for Em’s work. As a result our session was more fun for both of us. Later when I spoke to a friend about all of this he pointed out that most communication is not wildly brilliant, philosophical or even necessarily enlightening. And of course, he’s right. The majority of our communication with one another is about pretty basic stuff. Learning how to communicate basic things is relevant and important. But my impatience and expectations make me forget that.
I have learned over the years that if I want to change a behavior I need to have awareness that I’m doing whatever it is, I then need to have some degree of acceptance that I’m doing it before I can begin to make little changes to it. Those little changes repeated and added up can, over time, create bigger changes. Admitting aloud I am doing whatever it is can be very helpful as well. Without taking these steps however, I have no hope of changing the way I do something.
There’s a great deal of talk about autism and how our children and autistic adults need to work on a whole range of things, but there isn’t a great deal of conversation in the general population about our own neurological deficiencies. It seems to me that if we are going to continue to have this ongoing discussion of deficits, it’s only fair that we begin to detail our own as well. Now that’s a conversation I look forward to having. And while we’re at it, let’s include the positive aspects of Autistic neurology as well, because a little balance is a good thing!
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.”
Recently someone commented on the “I Believe” post. She wrote: ”She is communicationg to you, she communicates to you ever day. With her body language, with her expression, with her unusual use of language.”
I loved receiving this comment (I love receiving all the comments people have sent over the past year, they are always informative, interesting and often provocative), which adds to the earlier discussion in the post “Embrace-ness-ness” regarding how we view intelligence in non-verbal people and what that means.
As I have mentioned before, my father spent the last 15 years of his life in a wheelchair and though he was cognitively unimpaired, he was treated differently, almost as though people thought his brain had somehow been damaged too. His accident and disability profoundly altered my view of the world. I came to see first hand the pain and suffering caused by people’s responses and misunderstandings of his disability.
When we are out in public with Emma, she is a free spirit. I have never seen her look in judgement at another human being, no matter how deranged they may appear. Emma will sit next to a homeless person on the subway without a second thought. If someone smiles at her, she will smile back. Emma is without malice. She is utterly void of judgement. And yet, I see the looks of fear and confusion on the faces of those who see her and do not understand what they are seeing. I see how their eyes watch her and then move to us, trying to find a clue as to why this child is behaving so oddly. Many times people assume she is behaving as she is because of our parenting or lack of parenting. We have been given well meaning advice from countless strangers over the years, people who feel they are, no doubt, helping us. Yet, if we tell them she is autistic, this explanation is rarely met with understanding.
Autism is an almost meaningless word, at this point. It covers such a vast array of behaviors and issues, it is no wonder people feel confused. Many people know someone who is autistic and assume all autistic people must share the characteristics of that person. This could not be farther from the truth however. There are people who are verbal, non-verbal, semi verbal, highly verbal, but echolaic, verbal with perseverative tendencies, etc. Some people who have received the autism diagnosis are highly functional, go on to have successful careers, excel in their chosen fields, others maintain jobs, never missing a day of work, while others cannot hold a job and will need assistance for the rest of their lives. Meeting one person with autism is like meeting one person anywhere. If that person is not able to communicate in a language we know, it doesn’t mean they can’t communicate or do not want to.
We all want to communicate. Perhaps the single most destructive belief about autism is that those who are diagnosed with it have little desire for human interaction. Just because they may not be able to communicate their desires in ways we are used to, does not mean the desire doesn’t exist. If I want to communicate with Emma I just have to spend time with her. She communicates with me in a wide variety of ways constantly.
Emma with her beloved balloon string – recovered from the laundry hamper.
For more on Emma’s balloon string and her journey through a childhood of autism go to: www.EmmasHopeBook.com
This weekend while working with Emma on her literacy program I showed her an index card with the words – Put the bus here – written on it. I then pointed to a place on the table to the right of her and waited. A frog, airplane, bus and kid were all laid out in front of her. Without hesitation she picked up the bus and placed it where I was pointing. Were Emma a neuro-typical nine year old child this would not elicit the inward gasp of excitement I found unable to stifle. But Emma is not a neuro-typical nine year old child. Emma is a moderately autistic child with massive pervasive neurological issues affecting her speech, imagination, reasoning, ability to conceptualize, communicate, initiate and interact. To witness her reading and understanding what she’s just read with an action demonstrating comprehension is nothing short of miraculous.
And it fills me with hope.
If Emma is capable of reading, then it stands to reason she will be able to write as well. What will she choose to write about? What does she think about? How does she feel? Is she aware of her differences? Does she wish she had friends the way her brother Nic does? Does she know communicating is more difficult for her than for other people? What is it like to be Emma?
Other autistic children and adults, many of them non-verbal have found ways to communicate to us about their world.
One such person is Carly Fleishmann, a non-verbal autistic teenager who has found her voice through typing and now has her own blog: Carly’s Voice
I cannot know what the future holds for Emma. What I do know is that if we continue to do everything in our power to help her, she will one day be able to answer our questions and communicate with us. One day Emma will be able to let us in. One day…
For more on Emma’s journey through a childhood of autism go to: EmmasHopeBook
