Imagine being asked a simple question, say a question about whether you’ve ever been to New Zealand. Now you know perfectly well that you’ve never traveled to New Zealand, though you have a pretty good idea of where it’s located, however it’s not a place you’ve spent much time thinking about and it wasn’t even on your top-ten-must-travel-to-before-I die list. But when you opened your mouth instead of saying, “No, I’ve never been to New Zealand, why do you ask?” all you could manage to say was, “Yes!” and not just a sullen sort of yes, but a happy, eager and enthusiastic “YES!”
So now the person begins talking to you about New Zealand and maybe they’ve just returned or they were born and raised there and they go on and on and then say, “What was your favorite place in New Zealand?” Well, since you’ve actually never stepped foot in New Zealand this question is impossible to answer and so maybe you say “vanilla cake” because the one thing you know about New Zealand is that people are referred to as Kiwis and your only reference to kiwis is when you tried an actual kiwi once and didn’t care for it, but your favorite thing to eat is vanilla cake and besides vanilla cake makes you happy and this conversation is making you anxious because you said “YES!” when you actually meant “no” but things have moved on so quickly that you are feeling tremendous anxiety and wish you could just go somewhere away from this voice that is speaking so quickly about a place you’ve never been to nor have any interest in.
They look at you with that look, it’s a mixture of irritation and surprise, like they cannot decide whether you are purposefully making fun of them, or are tuning them out because you’re rude and have no manners or because you are actually hungry and are wanting to eat some cake. So they give you the benefit of the doubt and say, “Yeah, well we can’t eat vanilla cake right now and anyway we were discussing New Zealand, so I’d like you to focus so that we can continue.” Feeling frustrated and maybe even ashamed that they think you’re rude, you try to make a friendly overture by saying, “I like vanilla cake.” But instead of smiling they look even more angry and so your anxiety kicks into high gear and you bite your hand to center yourself and because you are overwhelmed with frustration.
Suddenly all thought of New Zealand and anything else gets tossed out the window, because here you are biting yourself to center yourself and also cope with how frustrated you are, but all it does is make the other person furious. You are so completely misunderstood and without the means to explain, you are caught in a web of other people’s assumptions. “Stop it! We do not bite!” the person scolds and maybe they grab your hand and hold it done at your side. Their grip is firm, so firm, it actually hurts, and they look so angry that it’s scary too. They are restraining you and glaring at you and all because your mouth wouldn’t obey your mind and said, “Yes” when you meant “no”.
I have no idea if this is what it’s like for my daughter or others who have what I call unreliable spoken language, but these are the kinds of scenarios I imagine and wonder about. Is this what it’s like? One day she will tell me, but in the meantime, there are others who are now writing about similar things, when their mind knows but their body is unable to do as their mind wants. This is what Ido writes in his book, Ido in Autismland:
“… my mom asked me to hand her a bag. I kept handing her a piece of paper the bag was near.”
“It happens less often now but it was common when I was small in my ABA drills. I wanted to touch a card but my hand had another plan so I had to redo drills until my hand got it. Not my head. It knew everything. My hand had to learn the drill. It’s something for the neurologists to study. This is why so many parents think their kids don’t understand them.”
“…as soon as I try to speak to someone my words just vanish. Sure, sometimes I manage a few words, but even these can come out the complete opposite to what I want to say.”
What would that be like? How would it feel to be completely misunderstood, your every action misinterpreted by someone else who believes you meant something that you did not?
Tracy Thresher types during a Q&A at the ICI Conference ~ July, 2013
I am reading Ido in Autismland: Climbing out of Autism’s Prison by Ido Kedar. This is another one of those MUST READ books. Ido is a non-speaking Autistic teenager who learned to write his thoughts by pointing to a stencil board using Soma Mukhopadhyay‘s RPM method. Ido now types on an iPad. When I first received a copy of this book, I admit, I was put off by the subtitle. You see, I was one of those people who once believed my daughter was trapped inside a prison that I called “autism” and for a long time I absolutely believed this. This thinking led me to believe that if I could cure her, if I could remove her “autism” she would be released from its prison. It was also this thinking that caused me to say how much I loved my daughter, but hated her autism. Once I discovered blogs written by Autistic people I began to reassess these various beliefs and finally began to understand how my thinking was actually harming her. I’ve written about some of this ‘here‘, ‘here‘ and ‘here‘.
But in reading Ido’s book and because I wrote directly to him and his mom about my initial reaction to the subtitle, I have come to understand that his reference to “prison” refers to being imprisoned in a body that does not obey what his mind wants, a mouth that does not say the words he wants to communicate and a society that perceives him as someone he is not. But more importantly this is Ido’s story and is about the way he perceives autism as it relates to himself and what he has been through as a result. To not read this terrific book because of semantics or because Ido’s perception of autism as “illness” is one I found unhelpful and even harmful to my family and daughter, would mean I would have missed reading a great book written by a really insightful and wise young man who had to fight against prejudices and preconceived ideas about who and what he was capable of. This is Ido’s story and what a wonderful story it is!
In the introduction, Tracy Kedar, Ido’s mother, writes,
“The ideas in this book challenge many assumptions long held by professionals working with autistic people. In our own experience, Ido broke free in spite of, not because of, the mainstream thinking today. If we had continued to rely on the specialists and educators who dominated Ido’s early years, if he had not been able to find a way to show me that he could read and write, and if I had not finally trusted my own eyes and impressions, Ido would still be stuck as he was, locked internally, underestimated and hopeless. It is time for our understanding of autism to undergo yet another paradigm shift, and Ido, along with other non-verbal autistic communicators, is a pivotal guide.”
*The use of bold is mine, used for emphasis and is not in the book.
Just as a quick aside, Soma’s RPM method begins with written choices, progresses to a stencil board with the student pointing to the desired letters with a pencil, then to a laminated alphabet board and eventually to an iPad and computer. Soma or the person doing RPM does not come into physical contact with the student and once the student has moved to a laminated board, she even encourages the student to hold the board themselves. The final step is to move from the laminated board to independently typing on an iPad or computer.
This quote was written by Ido in 2008 regarding his body and mind and how the two do not obey each other.
“Time after time people assume that I don’t understand simple words when they see me move wrong. Understanding is not the problem. It’s that my body finds its own route when my mind can’t find it.”
Again in 2008, Ido writes about his life before he learned to communicate using RPM.
“They misinterpreted my behavior often. For example, I remember that during my ABA supervisions, I sometimes ran to the window over the parking lot in an attempt to show them that I wanted to go to my car. They didn’t understand how a non-verbal person might be communicating. Once, when I got really mad I urinated in my seat, but the supervisor just thought I couldn’t hold my bladder.
“But even worse was that they didn’t support me when I began to communicate. Maybe they assumed I was too dumb, or they simply couldn’t see what I had learned because I learned it in a different way than their methods. The response to everything was to give me drills. If I had a dollar for every time I had to touch my nose, I’d be rich. I remember one day they realized that I hated being told to touch my nose, so they brilliantly switched the command to “touch your head.” I felt like a prisoner of these theories and methods…”
“On Being Silent and Liberated from Silence”
“Can you imagine silence your entire life? This silence includes writing, gestures, and non-verbal communication, so it is a total silence. This is what a non-verbal autistic person deals with, forever. Your hopes dim, yet you persevere in going to ABA or Floortime (play focused treatment for autism) or speech therapy, all to no avail. The therapists can’t help and you despair, and only you know that your mind is intact. This is a kind of hell, I am certain.
“The experts focused on stim management, or drills of rote activities, or silly play like finding things in Play Doh, over and over, on and on. But they never taught me communication. I shouted to them in my heart, “I need to communicate!” They never listened to my plea. It was silent.
“I could read from an early age. I could write too, only my fingers were too clumsy to show it. In school I sat through ABC tapes over and over and added 1+2=3 over and over. It was a nightmare…”
Ido writes how when he was seven years old his mother supported his hand in an effort to have him help write invitations to his birthday party and how she could feel he was attempting to move his hand and in this way realized he could write. But things did not immediately change. No one believed him or his mother.
“My ABA team tried to convince my mom that she was wrong. This hurt me so much because I thought they’d be happy for me and teach me how to communicate better.”
My daughter has asked that I read Ido’s book to her, so I am. It has opened up a whole discussion about communication, what it means to not be given the tools to do so, what is autism, what it means to be autistic, being in a body that often does not do as one would like and what others believe as a result of actions you often have little if any control over.
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.”
This blog is about Emma. It has always been about Emma. Every now and again I post something about statistics or links to other children or adults who have been diagnosed with autism, the occasional news item, but for the most part, Emma is the star of this blog. Today however, I feel compelled to write about the children and adults with disabilities who have been institutionalized. The defenseless portion of our population who do not have parents or families to advocate and defend them for whatever reason.
Yesterday I happened upon an article in the New York Times about a 13 year old boy with autism who was sat on and ultimately crushed to death in the back seat of a van while being taunted, “I could be a good king or a bad king,” by a state employee who was hired to care for the child. The article goes on to describe in graphic detail the abuse that occurred, the repeated hospitalizations, the horrifying conditions of the Oswald D. Heck Developmental Center, a state run home for children and people with disabilities near Albany, New York. An institution which routinely hires high school drop outs, people with criminal records, histories of drug and alcohol abuse and little or no training to care for our most vulnerable.
It is difficult not to console oneself, while reading such an article, with the idea that this was an isolated incident or at least a problem within this specific institution. Sadly it is not. Another article, also in the New York Times, which ran a few months ago about the systematic abuse that continues in several group homes was equally horrifying. The BBC ran a piece just last week on the terrifying cruelty and abuse in homes caring for the disabled in the UK. In fact, once I began digging around it wasn’t hard to find countless articles about rampant abuse taking place in group homes, state run facilities, institutions, privately run group homes all for the disabled, those diagnosed with autism, downs syndrome, cerebral palsy and the like. What was incredible was the amount of actual video footage of the abuse, testimony from witnesses, doctors, nurses, hospital records, irrefutable proof and yet it continues.
We talk about torture, the horrors of genocide all in the context of war and yet we have people, here in America, doing unspeakable things to our disabled population and it goes unnoticed, in fact it is even condoned within many of these homes. There is a “keep your eyes open and your mouth shut” policy at many of these homes. We have a burgeoning population of defenseless, often non-verbal children and adults who are being raped and tortured. If you object to the use of the words “rape and torture” consider this from the NY Times on March 12, 2011 by Danny Hakim:
“At a home upstate in Hudson Falls, two days before Christmas in 2006, an employee discovered her supervisor, Ricky W. Sousie, in the bedroom of a severely disabled, 54-year-old woman. Mr. Sousie, a stocky man with wispy hair, was standing between the woman’s legs. His pants were around his ankles, his hand was on her knee and her diaper was pulled down. The police were called, and semen was found on the victim. But the state did not seek to discipline Mr. Sousie. Instead, it transferred him to work at another home.”
The BBC report on May 31, 2011 – “…Wayne restrained Simone, an 18-year-old who suffers from a genetic abnormality, by pinning her down under his chair for half an hour. Another member of staff holds her in a headlock, despite the fact she shows no signs of resistance.
The footage also shows Simone being subjected to two cold showers in a single day with staff pouring mouthwash and shampoo over her she screams, saying: “It’s cold mum”.
That afternoon, with temperatures just above freezing, Wayne is filmed taking Simone into the garden and pouring a jug of cold water over her head. He only relents and takes her inside after she lies listlessly on the ground, convulsing with cold.
When Simone is unable to sleep that night staff repeatedly pour cold water over her in the corridor, before holding a cold fan to her face.
The day ends with staff dragging her into her room and forcing her to take a paracetamol while Graham, another member of staff, plays the role of German commandant shouting: “Nein, nein, nein”. Despite the serious nature of the abuse Kelvin, a senior nurse, refuses to intervene.”
We say things like – “never again,” we want to believe we learn from our mistakes, from history and yet there is no evidence to support this kind of thinking. The population that is being abused in all of these reports are our most vulnerable – children and adults who cannot speak out, who cannot accuse, who cannot defend themselves. And yet it goes on. There is nothing new about any of this. The reports of abuse are haunting, horrible, beyond description, the brutality, the sadism, the cruelty is inhuman, all the more so because it is children and adults with disabilities being victimized.
And yet it continues.
What can any one of us do?
We can begin by confronting and honoring what is happening by speaking out against it, by demanding the politicians we vote into office are aware and are willing to take a stand. This is not a problem that will go away because we want it to, because it’s too painful to read about. It will only end when we decide it deserves our attention as much as the populations of various countries we have chosen to defend by sending our troops to.
Emma's Hope Book 