With permission, this is a copy of the presentation that Roy gave at a conference for autism in May, 2008.
Communication Makes or Breaks a Life: This Boy’s Life-Saving Typing
I am Roy Bedward. My helpers today are Janet Abitz and Sally Young. Please look at my life story. Please look at the video of my life. I will be happy to answer your questions.
I just want to say that I’m so excited. It will be the most important thing I have ever done in my life. I can’t believe this is for real. It is all my dreams come true. Do you see why it might be exciting for me?
Please understand that I look like I don’t know much, but I am really very intelligent. Look into my heart and see yearning for much more. I want to try to tell the whole world how FC helps people like me. Before I could type, no one knew how much love was in my heart.
Thank you all for listening to my words. Please understand that I use people’s help in lots of ways, but please realize that all of this is my own work. Notice please the paintings that are on my slides. They are mine too. I want to thank you for being here today.
Typing is My Lifeline
I want to talk about how typing has changed my life in so many ways that I’m at a loss always for where to begin. I’m only now just understanding that typing is my lifeline to everything. I just thought it would pass as a temporary fad and that people would give up on me since I was not going to be able to type independently or learn to talk. I want to make my words so compelling that [non-believers] will not be able to ignore me.
Talking is Only One Half of Language
I want people to understand that even when someone can't talk, they can understand everything that is being said. Talking is only one half of language but people seem to forget that fact. They think not talking means not understanding. It is an erroneous assumption.
My Mind Is Good, Its Just Clouded Over With Autism
FC has helped me want to be better and want to keep living. My mind is getting clearer through typing. It feels like there is a mind in my head after all. If I can get my mind clear then there will be nothing stopping me. My mind is good, its just clouded over with autism.
Being a Ghost in One’s Own Life
Communication is everything. Without it, I am nothing but a wild animal. With it, I become more human both in my own eyes and in the eyes of others. It likens to being primarily a ghost in one’s own life. Remember that my body does not work under my mind’s control so body language is hit or miss and you probably won’t ever know which is a hit and which a miss.
Listen to these words on paper and try to imagine how you might be if you went for a whole day without talking. Then multiply that by a whole lifetime and you will understand how important communication can be.
I only learned this for myself a few years ago because before that I had never communicated an idea or a desire in my life. I’ll just say this, my life was no picnic then. Not that it is now, but at least there is the human man instead of the wild animal.
Communication is the key to pulling one’s weight in the world. Before I had words, I had no way to contribute to the world. This was a constant source of pain for me. I was nothing more than a baby in a man’s body. I need help with many things in the day and so I was always taking, never giving back.
Now with words, I hope to be making some small contribution to the betterment of the world and the improvement of the lives of others with autism. Let me just say that communication is everything.
Without Words, I Am Nothing
I want to tell about my important times when I could not communicate and I wanted to die. I wished I could die every day and I did not know why I was alive. It didn't make any sense to keep eating and drinking and sleeping when I was just an idiot in everyone's eyes.
You must understand that I never dreamed of being able to type or talk someday so it did not seem worthwhile to try to go on. Communication made living worthwhile. Without it there is no purpose or reason to go on. It makes or breaks a life. It gives me hope and reason for living.
People need to understand what it is like when you have no way to tell your thoughts. It is a prison of the worst kind. The people need to know that being able to tell others is what makes us human.
Before I could type, I was not seen as human, let alone as a man. I was at best a helpless baby. I cannot eat without making a mess. I cannot go to the toilet without help. I need help with cooking and dressing and most everything else in life. I am on the baby level of skill development. Without words, I am nothing.
I do have more to say about this. Before FC I did not think I was very smart. I often knew more than people thought but I did not think it was unusual to be able to read even when I was just a baby. I just knew about letters and words from the time I was little and I thought everybody else did too.
I Paid Dearly for My Title
Look at how many times in a day that you speak. Then multiply that by how many years old you are and then imagine not having been able to speak all those times. You might feel like you were crazy or like you might explode.
Then add on top of that the fact that people think you are retarded and talk to you in a loud baby-talk voice. Then add on top of that having a body that has a mind of its own and constantly does things without your permission. Then add on top of that the fact that you have only one crack at being a good kid before everyone writes you off as a behavior challenge.
This is my life so far. In the state institution, I was deemed the biggest troublemaker of all time and I paid dearly for my title.
Now that I have a way to communicate, I can at the very least be seen as a good guy in some people’s eyes. This might not sound like much but it can make all the difference in the world. Just being seen as a rational and intelligent man by one person can turn everything around overnight and make life worth living once again.
The Floodgates of My Mind
I want to tell about how typing changed me from being nothing more than a mindless baby into a man with something to offer to the world and especially to others with autism. I was only just the most idiotic thing you could imagine before typing. Then when I started typing, I got a glimpse of myself as more than an idiot. Once that happened, I was able to begin to grow and have thoughts that I could tell.
Before typing I never used words in my head. It was all just how I felt and how things impacted my tender nervous system. It was just a mishmash of sensation. Then I started to use words when thinking to myself. That opened the floodgates of my mind and it has not stopped flowing or should I say gushing since that fateful day.
I think about things all the time even when I'm sleeping. I'm thinking now in words that I hope to tell some day. I just don't ever have enough hours to get all the backlog of words out. The pile waiting just keeps growing and growing. It is my hope someday to type independently or maybe even speak so I can get caught up. [Having the back log of words] creates tension in my body, but at least some of them are getting out now and relieving some of the pressure. It is my hope that the scales will tip some day and more will get out than are being created.
Cleaned Out of All the Mourning of My Whole Life
I’m ready to tell how it feels to not be able to talk or tell your feelings. It is like my whole life changed overnight when I first told my mom I loved her. It was the first time I told my feelings to anyone and I could not believe how it felt. It felt like I was cleaned out of all the mourning of my whole life. It was amazing but what came after was just as amazing. It turned everything dark into a rainbow of bright colors. It made me see that life was more than just trying to get through the next hour or minute.
I think I believed that my life was nothing more than eating and sleeping with some hard time in between. To tell the truth I thought I would be better off dead but I could not figure out how to kill myself. It was so hopeless. I never dreamed I would get the gift of words in my lifetime. Who would have thought that crazy redheaded kid who was such a troublemaker would have much to say?
I Want to Tell How Typing has Changed My Life
It has given me hope for my future. It has taken me from being an idiot to being a somewhat intelligent guy. It has made me feel like a man instead of a baby. It has taken me from the edge of suicide to a somewhat satisfying life. It has given me a way to do this presentation. It has given me a way to tell my mom I love her. It has helped me tell staff things I like and don’t like. It has helped staff manage me better. It has made my behavior one hundred percent better.
I Did Not Know I Was Different
I was born with the thing that people call autism but I did not know I was different from everyone else until I heard my mom crying one day about me.
I was sad to think I made her so sad but I still did not know how I did that. It was not until much later that I began to understand what it all meant. Then when I was a little boy, I was sent to the state institution and spent those years in great despair and trying to escape.
I was successful only in getting staff angry and in making a name for myself as a troublemaker.
I then got free and started school. That was when I learned to use FC. That was the day I knew there was hope for my life. After high school I went to work at Goodwill Industries. That is where I am now.
I hope to write a book some day. I want to help others who don't talk.
Just One Tiny Slice of the Pie
[ What do you think about finding a cure for autism?]
I’ve thought about it and I believe cure is the wrong word to be using. Cure implies illness and I think autism is more of just a different perspective on the material world. You understand that when I say material world I mean pretty much your whole world because you normal folks hardly know anything exists beyond the material sphere that we inhabit. However, anyone with autism will tell you that this is just one tiny slice of the pie.
I might like to add that I hope the readers will understand I don’t mean to sound condescending or arrogant but it really is such a small piece of the big picture. Let me explain this more fully. I have vision that sees beyond the immediate context and hearing that hears more than just sounds. It is difficult to describe but I can tell you that there is so much more to the universe than you will ever know by just using narrow vision and limited hearing. When you open your senses to all that exists more comes to you than you can ever imagine.
Autism is a Way of Looking at Life and the World
Autism is not what most people think. It is a way of looking at life and the world. It isn’t necessarily a tragedy or a disability. It is all in the eyes of the beholder that makes it so awful. Autism is letting things enter as they are and not filtering out certain things that seem unlikable. If you let everything in just as it is you have a different take on life and the world. You learn to accept things as they are and not as you would like them to be.
Autism Gives the Real World a Sense of Magic and Color
I want to begin writing a book about how autism works in the real world and about how the real world impacts autism. I think they live a very symbiotic relationship that makes both of them more able to be valued and loved. Autism gives the real world a sense of magic and color that is lost on those without autism. The real world gives autism an endless supply of sensations with which to work.
Its No Picnic
The most important thing you can do for us is to start with the belief that we are intelligent. Nothing erodes the will to life, or even the desire to be good, faster than being seen as stupid. Liken this to being a baby in a man’s body. That is a sad and sorry thought. Please understand that this man is stuck in here and it is no picnic to be here [in my body].
The Bane Of Autism
Never think I'm not paying attention when I'm not looking because I'm always paying complete attention to everything. I just can't begin to say how much you miss when you make your attention narrow and focused. It is the bane of autism to be able to attend to way too much. It is not easy then to be in a more focused state, but I can do it when I need to, or when I have the opportunity to type.
My preference always would be to have my attention going to all things equally. Then I never am caught off guard by something happening that I don't know about. I can always feel things coming before they actually happen. I think it is a way of feeling safer and somewhat in control of my life. I don't think it was always this way, but probably got reinforced at the state institution, where you always had to watch your back and front and your top and bottom and sides. It was not a pleasing picture, believe me.
Yes, it is important for people to understand that it [being over-focused] is not really being focused as much as it is being unfocused and pretending to be focused. It is a different kind of focus when you are just lining up cars or when you are writing words for a presentation. The word-writing takes much more energy and more focus . Even when lining up cars you can be paying attention to many things. It just looks like focus but it's a fake.
The Cement Mixer
I want to write a book on autism from my perspective. I want to tell my readers how it feels. It feels like being in a cement mixer all the time. There is a constant spinning and tumbling that happens whenever I move or try to go some place. Having a soda or a linear object helps me keep the spinning at bay but sometimes it breaks up thelines of defense. Then I’m in big trouble because it takes me very quickly then I have to bolt after something to shore up the fences around me that keep the spinning at bay.
First, I want to tell how it feels when it stops. It is the most calm and peaceful feeling in the world, everything becomes soft and quiet and light. It is dark when I’m in the spinning. I don’t mean just light and dark light but rather light and dark thoughts. Light being happy and healthy thoughts and dark being scary, mean, and vicious ones. It is hard to type dark ones [thoughts].
Momentary Hell on Wheels
I have more to say. I want people to understand that bad behavior is not always intentional. It is often a disconnection between intention and body. It looks like intentional but from the inside, it does not feel that way. In fact it feels like momentary hell on wheels. Imagine having your body do things that are totally appalling to you.
It is the worst kind of humiliation. It makes me feel like a failure in the most fundamental way. It is the curse of autism. It is the greatest curse of my quite cursed life. It is the most embarrassing thing you could ever imagine. Please if you don't learn anything else from me, please learn this. If you can believe this then we are on our way.
Do Not Believe Body Language
I want to tell that they have it all wrong and that we are not retarded but instead we are highly intelligent and advanced people. The next most important thing for them to know is to not believe body language. It betrays me at every turn.
I'm Just A Tiny Passenger Riding Along
I’m happy to be here even if I don’t look like I am. I just get caught in a rut that won’t let go of me. It is like being in a river and trying to fight the current but not being able to because the current is so strong. I love it when I can swim hard enough to beat the current but that isn’t very often. It is as if I am in a strong current that pulls me down under the depth of the water and makes me feel as if I might drown. I know I won’t literally drown but I’m not so sure. I think I might not ever have control again. It just is scary believe me.
It makes everything so damn hard you would not believe it. It carries its own real dangers too. Because when it carries me out into the street, it becomes a matter of life or death. I know and understand that and yet am helpless to change it in the slightest. Please know I am trying my best. The most horrible part is people think I’m doing these things on purpose. If they only knew how untrue that was.
Think of how a train moves along a track and think of how many options it doesn’t have. It can only go fast or slow or stop. Nothing more in its resume. I love typing this kind of stuff to you but like the train, I can only type fast or faster. I do not make all of my movements on purpose. Sometimes they take over my body. When that happens, I'm at my body's mercy. It is the train and I'm just a tiny passenger riding along.
It Is Like A Volcano Inside Me
I was mad at staff and at the rest of the world too. I don’t know why. Typing about my anger is a good step in the forward movement of my life. I think it has been trouble-causing for me for a long time. Now I know what has been hiding under there in the basement. I look to others like such a happy guy, but underneath it all, I’m seething most of the time. It is like a volcano inside me. The time it erupts is arbitrary. It builds up and then erupts at the slightest provocation.
I Don’t Want To Be A Helpless Baby Anymore
I’m very mad today. I hate myself so much. I think I’m the most incompetent person in the world. I can’t even do the smallest task alone. I hate being so dependent on others. I know it isn’t my fault, but why did I have to be born this way? I love being independent but can only do one or two things that way. I’m completely dependent on others for most everything that matters in life. How the hell am I supposed to feel good about myself?
I believed for so long that I would be able to talk someday and that helped me swallow the bitter pill of these other things. But now I’m losing hope about talking, so then what am I left with? Nothing. I’m nothing. I can’t even go to the bathroom without help. I think it’s a shameful thing to be a man but not be able to piss alone. I don’t want to be a helpless baby anymore.
Everyone Has Their Own Idiosyncrasies
[Editors note: The setting is Border’s coffee shop. As usual, Roy is holding his favorite object, Dino - a toy dinosaur.He is also grinding his teeth. A man at a nearby table is annoyed by the sound and thinks it is the dinosaur making the noise. We explain the situation to him but he seems unconvinced.]
I want to say that I'm really happy to be here and I'm sorry I'm making trouble. I just can't stop [grinding my teeth]. Sometimes I don't even know I'm doing it. It keeps happening when I'm thinking hard or trying to block out other sounds. It is my protection from hearing too much. It also helps me think because it gives me something to do when I think. I'm sorry to say that it is largely outside of my control. I hope I can keep it under wraps for now.
Everyone has their own idiosyncrasies. I just happen to have one that is loud and irritating. It's just my luck. Hope I can tell him I'm sorry. I don't want to cause more trouble. But it is hard to know what is the best thing to do when these things happen. I'm not a good judge of proper etiquette in coffee shops. I'm only a guy who grew up in the state institution and what did we know about etiquette?
I just want to look normal, but hard as I try I can't quite pull it off. I'm doing everything right except this one little thing and it is the thing that blows the whole scene. I'm hoping that I can make up for my one indiscretion by being extra good in all other areas. I just want to be a regular guy having coffee but without the coffee. Only thing that I can say more about this, without running it into the ground, is that I'm sorry he didn't understand and I'm sorry I couldn't apologize to him. I don't want to make him the bad guy.
I Love It When People Really Like Me For Who I Am
I want to tell about the way I see things. I see the future of people in my life. I see who is good and who doesn’t really get me. I can feel the energy toward me. If they don’t like me they have energy that feels like spikes in my skin but if they have good energy I love the feeling on my skin. It is soft.
I am pleased to tell I can spot a friend from miles away by their voice, and by the way they touch me, and in the way they move their bodies to help me do things that I can’t do alone. All of these things together create a picture that is whole and that tells me who they are. I love it when people love the Roy who I am and not who I might be in the future.
Love Heals All
Love heals all. Love for others is only my hope. Love for me is not real. Love gets real when it is returned. Love might make a fool of me but it is a fool’s paradise. I think love is the only way in or out. It is the best defense against hate. It is the only thing we ever really know for sure. It is the most tangible thing we have of God.
It gives us more than we can ever know. It gives more to me than anything else. It makes life worth living and living worth more. It begins with babies and blooms. It remembers the beginning of time and the beginning of each of us. It is the only thing in the world that can free us from our chains. It believes in us and gives us strength. It visions us into ourselves and makes the future real.
Love of The Hearts Way
My heart is only love for you. The heart holds so much of who we are and of who we might become. It is the place where we are linked to both the past and the future. The heart loves what it loves with no real ability to have reasons or anything that makes sense to the mind. It just takes things in their raw form and welcomes the God in each person leaving the rest at the door.
My Life with God
This music is magic for my ears. It makes me think of the past times that I have seen miracles with my own eyes and have not been able to explain them except as miracles.
I remember one time when I told God I hated him and then the sun came out and there as a huge rainbow. How could that be anything but a miracle?
I’m hoping I can build my writing into a book. I will start by writing my life with God. I have always talked to God even though I was greatly angered by my autism. I forgot to be thankful for all that I did have in my life. Let’s just say that I loved and hated God all at the same time.
Please Listen To My Heart
Please listen to my heart. Please forgive these clumsy words. Just hear me from my open heart to yours. The language of my heart speaks eloquently, While my fingers grapple for the letters one at a time. My mouth has nothing to say. Heart language remembers the beginning and forsees the end. It holds my whole life in one single glance, And tries to convey everything at once. Words on the other hand, Break it all up into a thousand tiny pieces, Which never go back together again.
If You Could Live Inside My Skin
If you could live inside my skin for a moment or a day, You would see the shadows there. They hover around the body’s outer form. They help and hinder all at once, But they are no more. Now colors have taken their place. And even though I know they will return, I have seen the colors and been awakened to their beauty And the possibilities they bring to me. They are glowing inside my skin and radiating out my body. Don’t disrupt them so they will leave, And I will be left again, With only dark and lonely shadows to keep me company. I’m done now. It is fun to write poetry but I helped myself to more words than I deserve. I don’t deserve words. They are too good for me.
Its No Longer a Mystery to Me
Before I had words, I never understood how other people like to be together with others. Now I understand. It is fun to share ideas and have another person know what you are thinking. It is no longer a mystery to me why people like being together.
Does anyone have questions?
I’m more happy and more hopeful than ever before in my life. It will come to pass that I will be able to be all of myself with none stuck in too much autism - just enough to keep the beauty and lose the obnoxious behavior. Then I will be all Roy and not all autism as I sometimes am now. It’s a long battle but we are gaining ground.
I think I'm ready to go now. I'm all typed out. I want to thank all of you for your help and enthusiastic support. I love being able to tell others about autism.
You are good students. I'm happy to teach you more. It is something I have been dreaming of for a very long time. It is my purpose in life, I believe. I hope you find it worthwhile too.