I’ve written about Ido and his book and blog, both entitled Ido in Autismland, before, ‘here‘, ‘here‘, and ‘here,’ but want to devote today’s post to Ido’s latest blog post because Emma and I read his post this morning and Emma added some of her own thoughts to what Ido wrote.
Ido begins by talking about having just finished up his junior year at a non special education high school. (I originally wrote “regular,” but then amended that because I no longer know what any of these words even mean, much less how derogatory they sound.) Ido then addresses parents and then professionals and finally ends the post with a few encouraging words to other Autistic non-speakers.
After Emma and I read his post, I asked Emma what she thought. She wrote, “I thought it was decidedly helpful to read Ido’s writing. He tells strong truths lived. Teaching wasted talkers about life not run on word fuel.”
“Word fuel.” Can we just take a moment to fully appreciate that? “Teaching wasted talkers about life not run on word fuel.” There’s more, so I will disregard my urge to just end this post with that.
I asked Emma if she had anything she wanted to add to the paragraph he addresses to parents. Emma wrote, “Parents – you must address your fears and doubts first, and then have caring words of encouragement for all word thinkers.”
I then asked for her thoughts on the paragraph addressed to “professionals”. Emma wrote, “Teaching tedium does nothing, but water down ideas. Lethargy is the lesson learned.”
“Lethargy is the lesson learned.”
Ido ends his post with a few words directed to Autistics like him. Emma then wrote, “Work today, knowing each day pleases the necessary work of tomorrow. Having hope, and loving, believing parents will make work easier.”
Emma and I are speaking at the upcoming icare4autism conference here in New York City, July 2nd. Over the weekend I asked Emma what she thought the topic of our talk should be. She wrote, “Let’s talk about mind/body disconnect and how that makes people misunderstand someone like me…”
I told her I thought this was an excellent topic particularly as this conference will most likely not have an audience familiar with the idea of there being a mind/body disconnect or if they are, what that actually means. In fact this is one of those topics I wish I’d known about from the beginning. It would have been so helpful had someone explained to me, when Emma was diagnosed, what it meant. Perhaps more than anything it is the body/mind disconnect that caused me to make all kinds of assumptions about my daughter, which I now know were incorrect. Because she did not look at me or turn her head toward me when I spoke to her, I assumed she wasn’t listening. Because she said things that I couldn’t understand or were disconnected from my questions, I assumed she didn’t understand the question. I believed the words she spoke were the words she intended and meant. It didn’t occur to me that I was wrong. It didn’t occur to me that she was thinking a great many things, but had no way of communicating all that she knew and thought.
Both Ido Kedar and Naoki Higashida talk about how their bodies do not do as their brain requests. Tracy Kedar, Ido’s mom, writes in the introduction to Ido’s book, Ido in Autismland, “Imagine being unable to communicate because you have a body that doesn’t listen to your thoughts. You want to speak and you know what you want to say, but either you can’t get words out, or what comes out are nonsensical sounds or the same embedded phrases you have said thousands of times. Imagine your face staying flat and blank when inside you are furious, sad, or wanting to smile in greeting.” Later Tracy writes, “Since you cannot express your thoughts, only you know that you are intellectually intact.” And still later Tracy writes, “Imagine being stuck in an educational program, year after year, that is designed for a preschooler who learns slowly. You are bored, frustrated, angry, misunderstood and more than a little hopeless.”
Emma has written about some of this before, but in the next month will be writing about her experience with the “mind/body disconnect” more. I will be reading her thoughts and insights at the conference and adding my experience of what I once believed. Emma will then answer questions from the audience time permitting, by writing on her keyboard.
I asked Emma what she wanted to call our presentation. She wrote, “Let’s call it – Rethinking Your Beliefs About Autism”
Five years ago I was in a bad, bad place. Life felt unbearable. The future loomed ahead shrouded in fear. I could not imagine a life that was not bleak and filled with pain. There were times when I could not bear the thought of another day. There were times when I felt it was all too much. People would make kind suggestions, but none of their words made sense to me. I was sinking and saw no light. I thought it was because of my specific circumstances. I thought it was because I was the parent of a child who, I was told, couldn’t and didn’t understand most of what was said to her. I was told she couldn’t comprehend this world. I was told concepts like less and more, time, currency were beyond her ability to grasp. I was told she was in her own world. Despite all the years of therapy, there was no hope of her being mainstreamed, she did not make the sorts of leaps forward that other people’s children had.
I blamed myself, I blamed my husband, I blamed the environment, I blamed my father, I blamed… There were so many things to blame, but all it did was leave me bereft, empty, and in the middle of the night I would lie awake and cry. I cried for myself, but I also cried for my child. I loved my child. I ached for my child and what seemed to be her inevitable future. Along with the ache for what might have been, but was not, was the sad, dark, bleak despair that seeped into every aspect of my being. I had fantasies of “heading north”. I would smile weakly at my husband and joke, as I gathered my wallet and keys for a quick trip to buy milk at the grocery store, “I may not be back.” Richard would grin and maybe we would even chuckle, but there was a part of me that wasn’t laughing. There was a part of me that meant it. I wanted to leave all that pain behind me.
There are those reading this who will cringe at this description. There are those who will judge me and what I once felt. There are those who will point out how self involved all of this sounds. They will say, but how could you not see that what you were feeling was affecting your child? There are parents who have children just like mine who never felt what I’ve described, who will not be able to understand or relate, who will read my words and shake their heads in horror. I understand those responses too, because now, I catch myself feeling those feelings too.
My daughter has defied everyone’s expectations, including ours. She is writing now.
She is writing such incredible words. Sometimes a sentence may take her five minutes to construct. I would cheerfully sit for thirty minutes or however long it takes for her to express herself. Parents hear about my daughter and they say, “Ah, but my child isn’t like that.” And so I ask, “How do you know?” Parents say, “I know my kid. He/she isn’t able to understand.” I once believed that too. And so again I ask, “How do you know?” Parents say, “I know my child better than anyone.” I once said this as well. I thought I knew. I believed what others told me. She would laugh and then run full force into a cement wall, using her head as a batting ram. We would get the dreaded phone calls from her school. All those doctors, therapists and teachers, all those IEPs where she was described as unable, incapable – “Emma is unable to decipher simple text.” “She does not know the value of a penny.” “We will continue to work on sight words.”
Today my daughter is enlightening me. If you want to know more, read “How We Got Here“. Just the other day Emma wrote, in response to an incident at school, “You must remember how stressful it is not being able to tell anyone my silent screams of disconnection.” Her school is now trying to learn RPM so that she can write with them too.
I cried when she wrote that. I cried because I didn’t know until recently. I cried for all the years when she had no way of telling us. I cried for all the times I didn’t believe. I cried for all the children who are just like her, right now, who cannot tell anyone about their silent screams. I cried for every single parent who has ever felt the way I once did. I cried for every single child of those parents and for all the times I heard about a child who was writing to communicate, just as my daughter is now, and how I didn’t believe she would be one of them. I cried for all the times I heard about an Autistic child or adult and consoled myself by saying, “they are an anomaly.” I didn’t dare hope that one day my daughter might be writing the things she now writes. I didn’t dare hope, it hurt too much.
To the parents who feel overwhelmed with fear and despair – I was once just like you. Had I found a secret online group of parents feeling and talking the way I once did, I would have joined in an instant. I’m grateful now that I didn’t find such a group because there’s another way. I found another way, but not before making many, many more mistakes. This blog documents a number of the mistakes I’ve made over the years, but not all of them.
If there’s one thing I want to say, it’s please, dare to hope. Without that we are all lost.
*As always, I asked Emma for her permission to publish this post.
Emma gave me permission to quote her words, written this past Sunday.
“Please remember that my mind tells my body and my mouth to do all sorts of wonderful things constantly, but they don’t obey.
“Sometimes I want to scream. I am trying so hard, but no one notices and they are annoyed instead of understanding.”
Emma wrote this in response to her gymnastics teacher, but it applies to so many instances where she confounds those around her by doing things she knows she shouldn’t, things she doesn’t want to do, doesn’t intend to do and yet does anyway. Typically people assume she is doing these things because she doesn’t care, or is trying to be mischievous, or “wants attention” or any number of assumptions people make when witnessing her actions. But in speaking with Emma, it is clear how incorrect these assumptions are. As Emma wrote, “I am trying so hard, but no one notices and they are annoyed instead of understanding.”
Sydney Edmond is an Autistic young woman who describes herself as “… locked inside a body that won’t cooperate.” Sydney published a book of poems, The Purple Tree and Other Poems. Recently Sydney gave a lecture to a group of Special Education students and educators at a high school. She generously gave me permission to reprint some of her lecture here.
“People need to know, because Society apparently thinks autistic people are lacking intelligence. Our wandering wayward eyes and hands flapping, screaming, and anxious stimming don’t help, either. But in truth, we polish our souls deep down inside where they can’t see us, while our dastardly bodies act in ways we can’t control. That’s right. I told you I have lousy control over my behavior. Can you relate? Perhaps you have moments when your body does things without your permission? When you lose control and shout at someone or hit out? Well imagine what it would be like if you were just the opposite, and were always out of control with little solid gold moments when all the pieces come together and knowledge passes impulse? For those moments we are the captain of our ship and we feel unbelievably perfect. But, passing time wipes it away. Possibility becomes disability again. Look at your fellow students with autism deeply and with patience. We are in here. And we are exhausted, panicked, and lonely.”
Ido Kedar, who wrote the book Ido in Autismland writes about the body/mind disconnect he experiences, as well as the embarrassment he then feels when his body does not do as he wishes.
“I feel it’s time autistic people finally say what it’s like to be drilled in flashcards over and over when your hands don’t move to your thoughts, or to have your teacher say in front of you that you can’t count because your stupid hands refuse the right number you’ve counted in your head. I remember standing miserable and embarrassed, holding the wrong number of straws and hearing my teacher say, “It’s clear he has no number sense,” as if I couldn’t understand or had no emotions either. When I think of these frustrating experiences I am grateful I am not in that situation anymore. But many of my friends still are. That’s why I cry for them.”
Sydney Edmond, from her recent lecture, wrote:
“I found freedom and wonderful joy when, as a ten year old, I was taught how to point to letters on a Letterboard and spell what I wanted to say. I eagerly worked, and within a few months, I was able to communicate. In the beginning, I needed a lot of support. I couldn’t even point my finger when I wanted to. My body, as usual, did not cooperate. I had to force it to, so all my words, stored away for ten years, could finally come out into the world. Do you want to know what I asked for? Well, I asked to have my own pizza. And then I asked to learn ballet. And piano. And I asked to learn about history. I was thirsty to learn. I finally had a way to ask questions that let people know I was intelligent. Soon I learned how to type on a keyboard and have a lovely voice added to my words. I went back to school to prove I was intelligent. I had been tested and told again and again I had the intelligence of an infant. Having a method to communicate turned it around. My language comprehension was college level in 8th grade when I was actually given a means to show what I knew.
“Loads of us, people all over the world, type to communicate. I am one of many, and we all want people who cannot speak to have the opportunity we are enjoying. I hope that my words today might spark a willingness to proceed on the journey of a lifetime. I hope one of you will take action to give a voice to someone who cannot speak.”
Ido, Sydney and Emma all began writing to communicate by using a letter board. All of them discuss what it is like to have a mind that “…tells my body and my mouth to do all sorts of wonderful things constantly, but they don’t obey.” Each of them describes their experience, whether that includes frustration, embarrassment, or shame and what it is like to be so thoroughly misunderstood.
I am grateful to each for allowing me to reprint their words in the hope that others will begin to reconsider their assumptions and how they then respond.
Yesterday I quoted Ido Kedar, whose book, Ido in Autismland is his account of what it’s like for him as a non-speaking, Autistic, teenager. The quotes I used were specifically about his experience with ABA, the acronym for Applied Behavior Analysis. (Ido also has a blog of the same name.) A couple of people accused me of “falsehoods” and spreading “inaccurate information”. One person wrote, “I have never read so falsehoods in one post in my life. You clearly have zero understanding of ABA or the methods used in its approach.” Except that the bulk of the post he was objecting to was made up of quotations from Ido’s book about his experiences as an autistic person.
I asked for clarification and was told, “Falsehoods being projected do not need to come as a quote from you directly. This is your blog and you are the one responsible for providing accurate information. If you are going to show a quote from a student, then maybe you should also factor in that the particular therapist the student had was not a very skilled one or a qualified one at that.” Except to make such a claim that “this particular therapist was not skilled or qualified” would be inaccurate and something I cannot possibly know as I’ve never met the therapist being referred to. Evidently telling a lie is acceptable if it’s done so in favor of another’s opinion, however quoting someone’s firsthand experience is reason to be accused of creating falsehoods.
Another commenter wrote, ” The posts regarding ABA on this blog are grossly inaccurate. Unfortunately, the author of this post (and subsequent commentary) are so misinformed on the topic that they are not able to recognize exactly how inaccurate the information is. For those of us who understand the field, this can certainly be frustrating.” Except that so many being referred to and who were commenting are Autistic. In fact a couple of those who commented yesterday are teachers and work directly with Autistic children, one is a professor and teaches disability studies to special education educators at the university level. These are a few of the people this commenter believes to be “misinformed” and even went so far as to scold, “I urge you to become better informed on the topic.” It would have been comical had it not been so upsetting to read the condescending tone and level of rage this one post and comments inspired.
I’d like to clarify a few things… Let’s take ABA out of this, I do not care what the “therapy” is being called, if it is not respectful of the person it is meant to help, if it uses dehumanizing techniques such as electric shock, restraints, isolation rooms, repetitive testing requiring the person to master an action before being allowed to move on, it is not a therapy I will ever support. If a therapy is meant to teach compliance, teach someone whose neurology and sensory issues do not make sitting still simple or easy, who cannot listen, attend and make eye contact all at the same time, I question it’s objectives. If a therapy is looking to “fix” another’s neurology, make that person “indistinguishable from their same age neurologically different peers” I will continue to speak out against it and will encourage others to do the same. If the therapy in question does not presume competence at its core and does not take into account the person’s specific neurology and sensory issues, it is flawed. If these ideas are threatening to some, so be it.
So let’s stop talking about ABA specifically, because it seems to me the conversation continues to get derailed about what ABA is or isn’t, how some practice it or do not, how it has or has not evolved, instead, let’s discuss these other concepts. And if you believe something that goes against what I’ve just said, fine, quote me in the comments section, tell me why you disagree, back up your ideas with examples, preferably with words from Autistic people and I will happily listen. Accusing me of “falsehoods”, “inaccuracy”, being condescending, lashing out and making personal attacks are not comments I will allow through moderation.
Colin sent me this graphic, something I think we can all relate to…
I finally did something I’ve never done before. I’ve closed down any further comments on a post I wrote about the ethics of ABA. I continue to get up to thirty views on that post daily, now over a year later. Most of the comments are coming from ABA therapists who write in defense of ABA, which is fine, except most of them are saying the same thing and my response is also to repeat what I’ve said before, but I’m also getting comments from people who are furious that I dare suggest ABA is anything but wonderful, so instead of endlessly repeating myself, I have shut comments down, just on that post.
If you are an ABA therapist, it is your obligation to, at the very least, read what those who are autistic and were given ABA as children are saying about it. If nothing else, please read Ido Kedar’s book Ido in Autismland where he describes what it was like to be a non-speaking autistic child, with a body that does not do as he would like, and who was given hours of ABA therapy every day for years.
Ido writes:
“It frustrates me to look back at how my ABA teachers drilled me endlessly in basic skills only to say it wasn’t mastered because I had inaccurate pointing. I knew everything so easily. I was bored to tears but my apraxic hands would go to the wrong card so they thought I didn’t know “book” or “tree”. I did it over and over. It was the worst. The assumption that people don’t understand if they reply incorrectly is a huge misconception. ABA is built on this erroneous premise.”
Again from Ido in Autismland:
“My ABA teachers would talk baby talk and tickle me to reward me. I cared that they see me as smart, so I tried, but I think it was pointless. I often felt that they couldn’t see my potential, just the drills. I feel it’s time autistic people finally say what it’s like to be drilled in flashcards over and over when your hands don’t move to your thoughts, or to have your teacher say in front of you that you can’t count because your stupid hands refuse the right number you’ve counted in your head. I remember standing miserable and embarrassed, holding the wrong number of straws and hearing my teacher say, “It’s clear he has no number sense,” as if I couldn’t understand or had no emotions either. When I think of these frustrating experiences I am grateful I am not in that situation anymore. But many of my friends still are. That’s why I cry for them.”
Regarding eye contact, Ido writes:
“I can listen better if I don’t look at the person. I can look, but it’s not pleasant. In ABA I had to look in people’s eyes with a timer. It was so torturous I did it, but with terrible anxiety.”
Anyone reading this, I hope will be asking themselves what the objective is to insist someone “look at my eyes”. Would we prefer someone looks at us and pretends to listen to what we’re saying or that they listen? If someone is not able to do both, is there any point in insisting they do so anyway?
Again in Ido in Autismland:
“In ABA supervision I had to do drills in front of a supervisor with all my teachers. Then they’d talk about me in front of me to decide how to improve my performance. It’s miserable to be an object of study especially because they never realized I understood what they were saying. The consequence of testing me in front of people is that I grew embarrassed and ashamed inside. By analyzing me in front of me, usually wrong, I grew resentful. It was so frustrating I don’t like remembering it to tell it now. It’s over for me, thank God, but not for other kids so I have to share this to help them too.”
Rather than continue to quote Ido’s book, I urge you to read it. This is one person’s experience, but it is also an experience that a great many have said they understand and had as well. For those who believe in ABA’s benefits, I just ask that you consider Ido’s words, echoed by so many. There is no “winning” this argument. All of us have, I believe, similar goals, and that is to do what proves most helpful for our children.
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.
Emma's Hope Book 