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.
“Happy”
Emma's Hope Book 
This one made me cry. Partly because of how frustrating it must be for the three mentioned in this blog post, and for my son, to have all this knowledge in their head and then to have such a hard time communicating it to others. And partly because so many people are so dismissive of them, or, if not dismissive, just don’t understand. The odds are just stacked against them.
My daughter is in the same situation. But she is also increasing her ability to type, and also expressing similar perspectives. All we can do is “signal-boost” these brave Autistic folks’ messages and not let the message of despair about autism that is broadcast by so many go unchallenged. The opportunity is huge, and a big piece of it is up to those of us who accept and embrace Autistic sensibilities and want to make sure they’re not disrespected or ignored! Yay and thank you Emma, and Ariane!
Thanks, this needed to be written. I have re-posted this on my facebook wall and hope everyone reads it. I think the inability to control one’s body is the number one reason kids like ours are misunderstood.
It does so much good to see all these affirmations. The problem that we have in our world is one that my brief time in the Marine Corps highlighted: Perception is Reality. That was a mantra – and it’s functional in the sense of training for war – but not in the subtle landscape of everyday life.
This is such a wonderful point… about survival, about instincts, about the very nature of perception and what that means…
Wow! This is so important to remember. May I ask, Emma, how did you learn to read and spell?
(Is it helpful to label things around the house or classroom with their names?)
As a teacher, how my students answer questions helps me to figure out what to say or what type of practice they need.
I can empathize with teachers who keep working on “too easy” concepts when a child has trouble controlling their response.
I teach math to gifted students (several also have learning disabilities or ASD) I am constantly adjusting – because a “too fast” explanation is as frustrating as one that is too slow.
Sarah – I will show this to Emma later this evening. She may be too tired to respond, but I will try to get back to you on this at some point in the next few days.
I’d just like to add that Emma’s teachers often have operated under the misunderstanding that what Emma “said” in response to a question, whether that was reading comprehension or a mathematical problem was what she “meant” and then would adjust the lesson accordingly. This was problematic because what she “said” was not what she meant to say. For years she continued to be sent home with basic math sheets as she could not give the correct answers, even though, she now is able to tell us through her writing, she has known the answers for many years. Even if Emma is given a pencil and asked to silently do the equations, she will not be able to write the correct answer.
Since Emma has begun using both the letter and number board, she is able to answer these questions consistently and accurately, but not with every person who attempts to work with her.
Emma and I are currently trying to train the staff at her school so that all may work with her using the letter and number board, but it is not a quick process and requires daily practice. A few are making great headway however and we are very hopeful the others will follow.
Thank you for your reply
(and Thank you Emma, I don’t fully understand how tiring it must be to answer questions, but I am appreciative and flattered if you do!)
I am glad that Emma is learning how to better communicate with you and her teachers. For me, how I understand math and the symbols that I use to write it are so closely connected that it is hard to separate them. However, you (or Emma) might enjoy and appreciate the beauty of math in these links: (I do not want to impose, or add work, but if you have a few minutes, you might enjoy these links)
Prime number patterns (my students begged me to leave this playing so they could keep watching it during lunch)
http://www.datapointed.net/visualizations/math/factorization/animated-diagrams/
Another favourite – the “mathemuscian” Vi Hart talks really fast, and bounces between math concepts that are perfect for elementary aged students, then connects to high school, university, and PhD level. I certainly don’t understand it all! But I think that her excitement and enthusiasm is almost the math version of watching an olympic athlete perform, or listening to an orchestra. (Beautiful, inspiring, fun, even we don’t understand all the nuance)
Start here: http://youtu.be/ahXIMUkSXX0
(my favourite video, and the first one I show my students … )
Sarah
Emma was too tired by the time we got home last night, as Tuesdays are the day we train her staff at her school. If you don’t hear from me in the next two days, please remind me. We are being inundated with questions and requests and I’m having trouble remembering who and where people are asking and for what…
Thanks for the links!
Sarah these links are so cool. Got more please?
Sarah, we are loving these links. More please if possible! Thank you!
Hi Sarah,
This is Emma’s response to your question.
“I learned by watching the words my mom read to me. I was able to read many years ago and could write, but didn’t have any way to show it.”
I then asked her, “Were you able to read when you were very young?”
Emma wrote, “Yes.”
I asked, “When you were a toddler?”
Emma wrote, “Yes.”
Emma, I would like your permission to post your words in our classroom for all of the adults to be reminded of the struggles you and those like you face each day. I, of course ,will give you full credit.
Hi Martha – I will show this to Emma this evening and get back to you. I’m pretty sure she will be very pleased to have you post her words in your classroom, but let me just double check.
A good plan.
Yes, go ahead and post. She is happy her words might be helpful to others.
Thank you, Emma ! Your words will help the adults in our classroom remember to be patient.
OMG, this post made me cry. I am so so glad our kids finally found a way to communicate with us and the world and we see how smart and sensitive they are and how much wisdom they were hiding inside. We are in the beginning stages of RPM, but I am so so hopeful that soon one day my son will be also able to tell me all his thoughts! Thank you for sharing your thoughts Emma and know that you are making huge positive changes in many people lifes!
Another great post 🙂
This disconnect between our minds and bodies is confusing to a lot of people. The autistic brain is bombarded constantly with so many perceptions and impulses that coordinating our actions can be a hopelessly
complicated task. It’s like different parts of me all fighting for control of my body.
I often find it very hard to explain how i can one day hold long philosophical conversations, and go completely non-speaking the next. Or can’t get any work done in school, but get a perfect score in a test. But at least I have the
advantage of being to show my competence at all. For all the ones who can’t it is that much worse, and it kills me to even think about it.
Ilja my older son has the same problem…sometimes I think it is harder for him #1 i didnt find autistic voices until he was 14 and so i didnt understand the disconnect either and #2 because he has been taught basically to pass until he fails so people dont see he is in need of more support than they perceive he does.
My younger son is much more impacted and a lot like Emma except he doesnt even have unreliable speech. But he was fortunate enough that I had my mind and beliefs change when he was just a toddler so i hope that I am providing a foundation for him to have the confidence when as he grows older and he is subject to many more perceptions of him that he can not internalize and know he is intelligent and other people out there know it and together we will fight to make everyone see.
Your sons are lucky to have someone who believes in them. That is the most important thing. So many autistic people are hurt by all the anger and negativity and sometimes they lose faith in people. When that happens, what is there left to keep fighting for ? We need to always keep having hope.
Beautiful hard truths expressed here. It’s time for the world to listen ❤
I wonder how I can help. I have lots if time, being retired. Are there ways to find out if there is need in our own communities? Who would you contact. I read Peyton Goddards book ” I AM INTELLEGENT” and it has had a tremendous impact on me. I worked with challenged children for many years as a nurse, and I knew in my heart so many were trapped in their illness. I didn’t know how to help. My prayers are with you Emma.
Hi Kathy,
It is wonderful that you’d like to help. However if I could just make a gentle suggestion, please beware of using language like “illness” to describe a kind of neurology. This is the sort of wording that is rampant and used by most organizations and the medical establishment and is really destructive and unfortunate. Neurology is not an “illness” it is a type of neurology. The distinction is an important one as it changes how one then views those who have a different neurology.
As far as your question regarding finding out “if there is need in our own communities?” I urge you to contact ASAN – http://autisticadvocacy.org They have chapters in other places I believe and may be able to direct you to one near you.
Such a wonderful post – so many insights. Ido titles one chapter in his book “in a body with a mind of its own” – something that so startled my husband Norm and me (Norm has cerebral palsy) since he’d long been describing his experiences in exactly the same way with the same words. Disabled people with CP are generally understood by most as not responsible for spasticity. It just happens, and no one would try to do behavioral remediation. Sadly, Autistic people are often blamed for their inability to control their bodies – it’s seen as volitional.
And, Kathy – wonderful that you are recognizing what’s going on for people, but be so cautious about the narratives that posit people as “trapped” or as “ill”. Helping may not be the answer – solidarity might…
Hello! I have been following your blog for just a short while and I want to thank you for the sharing that you do. I am a neuropsychologist. I have been working for eight years with a nonverbal girl diagnosed with Rett Syndrome named Sophie. She is the central player in my forthcoming book NEW FRONTIERS IN SENSORY INTEGRATION that will be released very soon. Emma is an inspiration for Sophie, and I am talking with Sophie and her mom about starting a blog. Rett Syndrome is an extreme form of autism in some regards. Some disagree with categorizing it as autism but the similarities are obvious from a communication and social engagement standpoint. I am inspired by the availability and simplicity of the letterboard. Sophie uses an eye gaze device that she is gaining proficiency with but it is very complex and difficult to master. I relish the accessibility of the letterboard. I appreciate Emma’s clarity and how she is honored in these communiques. I am grateful for your willingness to share your experiences with others. I feel this is of the greatest value. I can’t thank you enough. Stephanie Mines, http://www.Tara-Approach.org.
Hi Emma,
We are so proud of you and your mom!!
With Love,
Roberta and Joey L.
This post hit home for me. Although I’m not autistic, I completely understand the embarrassment of not being able to control your body’s actions because of what your mind tells it. I am epileptic so occasionally, my mind takes control and I may stare off into space for a bit (petit mal seizure) or I may fall to the floor and have convulsions (grand mal seizure). People tend to look at me as if I’ve lost my mind. Some even make comments. Even family members who know about my neurology say things, which still shocks me. I always get embarrassed and apologize for creating such a commotion (because a huge crowd always gathers, esp if it’s a grand mal).
Emma and everyone like her is amazingly strong to deal with everything they go through each day. They are all bright shining stars in this bleak world. I look up to each and every one of them! Thank you, Ariane, for this post. It is one that was definitely needed! I am sharing it in the hopes that others will better understand autism’s “little quirks” when these people are trying so hard to communicate.
Omg I cried. I can talk out loud but I wish it was acceptable in society for me to write instead because that’s when my true feelings, thoughts etc can come out as intended. I cry for the kids and adults that feel so locked inside because I know how frustrating it is!!!!
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Can you please give more information about the letterboard you mentioned that Ido, Sydney, and Emma use? Are there resources I can access for my students?
Thank you for sharing.
Hi Amy,
You can find both the letter board (it was actually a stencil board in the beginning & later we moved to the laminated letter board) – http://www.halo-soma.org/store.php
Also this is a video of one of Emma’s first presentations using the stencil board – http://youtu.be/RD805XUuF8c
Beginning at around the 3:30 mark on this 9 minute video you’ll see me show the laminated board and then Emma writing with the stencil board.
Now Emma types on a bluetooth keyboard that is synced to her iPad. – http://www.amazon.com/Kensington-KeyFolio-Removable-Keyboard-K39512US/dp/B005Y1CYSQ/ref=sr_1_2?s=electronics&ie=UTF8&qid=1416749124&sr=1-2&keywords=kensington+keyboards
I do not know what Ido or Sydney use at this point. Ido may have graduated to typing on any computer.
IMHO, this post shows the importance of early intervention not for teaching Autistic people how to be ‘good little neurotypicals’, but for enabling them to communicate. Don’t give an Autistic child AAC when they’re ten years old, give it to them when they’re three (if not younger).
To correct myself: Don’t give a non-speaking Autistic child AAC when they’re ten years old, give it to them when they’re three (if not younger).
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