My first voice output device was big and only let me use eight symbols at a time. Howie made a book with over a hundred symbols and categorized them to put on the voice output device when I would be in different situations. Wow, to think about it, Howie had no life. Just joking. He had a girlfriend at the time, who he later married.
A little bit after I got my first voice output device, I was already growing out of it. My parents, with the guidance of Barb and Howie, ended up getting me a computerized voice output device, which changed my life. The voice output device had words scrolling at the top of the symbols. My photographic memory started taking in those images/words.
A couple of years later, Howie and Barb started coming up with a spelling program. The program was really clever and I recommend it for anyone wanting to teach someone with autism. They showed me pictures with text and would first get me to match Scrabble letters to the text. Once I was able to match, I then had to spell the word without seeing the text. It was all sight learning. There is something I never told Howie or Barb: I already had over two thousand words in my head that I was just processing and their program started getting me to understand what to do with those words.
I find it weird, but I have never been asked what was going through my head the first time I spelled. The truth is, as you probably read in my dad’s chapters, I was feeling sick that day. Oh wait, I forgot you haven’t read his chapters. So, I was feeling sick the first time I spelled. Howie pulled me over to Barb and I just felt achy all over. I remember thinking I didn’t want to use my voice output device, so why are they making me? I knew Howie wasn’t going to let me go without getting me to say something. I just wanted them to know I was not in a good place and then, in my head, I saw the word help, a word that had been on the main page of all my voice output devices since the beginning. I started to spell it: H E L P. I then pulled away to lie back on the couch when Howie pulled me back. I think they were shocked and I, well, I didn’t really process my accomplishment yet. I felt really nauseated and threw up a little in my mouth when Howie pulled me back to spell. I was placed in front of the voice output device again and, well, you know, I wrote “teeth.” In my head, I was just trying to think of a word that would describe what just happened in my mouth. In hindsight, I should have written the word mouth, but I was just a kid.
I didn’t fully understand what I had done until a day or two later. It took time for me to process that part of me, again. I was proud of my accomplishment but did not know how really big it was. It would open a world for me I really wasn’t sure I wanted to be in. Don’t get me wrong. The ability to communicate my wants and needs is great; however, with great abilities come greater expectations.
A month after I started typing, all new and creative programs emerged. I remember my silly brother Matthew running around my house with a label maker labeling everything. Howie made me look at every word I walked by. Just to tell you how crazy my brother and Howie were, they labeled the toilet and every time I sat down, Howie made me point to the word. It was really crazy but helped me start to audio filter the label with the word.
As the months went by, I started to get new voice output devices that would help me showcase my newfound skill. I started using a device called a Lightwriter that made me feel like I was even more different than everyone else. All my other devices always piqued people’s interest with all the pictures and their shocking talking ability. Because of that, I never felt different but with my Light-writer I never got the same reactions, and I got more strange looks than curious looks. After I kept pushing away these devices, Howie looked into getting a computer for me. He found an amazing program called WordQ that had word prediction and also had the feature of text-to-speech so I could have a conversation with anyone in a room or around the corner.
Sitting at a computer brought new and familiar challenges to me. I have been quoted as saying: “My body feels like a can of Coke that has been shaken for hours.” Now sitting down at a table and writing a sentence took all of my concentration and strength. I would find, after talking for only five minutes, as soon as I would stand up, it felt like someone opened the can of Coke and I would just explode. I would have to get out all this built-up energy by jumping, running, and rocking. To look back at it now, I wonder what my mother and father thought about it. Here I was, a girl that was now able to spell but freaking out after sitting so calmly?
More challenges always seemed to present themselves. I had a hard time using both hands and if I would bring my left hand up to help me type I found it got in trouble. So I would concentrate not only on typing but on keeping my hand down and out of trouble.
My ability to keep the amount of focus and concentration I needed to type was always a challenge. There were times I would just refuse to type for days and months. I never thought of it as giving up or quitting but more of taking a small break or rest. I know what you’re thinking. How would I express myself or get my needs met if I couldn’t talk? The fact of the matter is I found not talking a challenge, but I think it was also easier in ways. I was able just to run in to the kitchen and grab what I wanted or just point to something and people were so glad I pointed, they would just give it to me.
If I had to pick a point in my life that really made me excited to be able to type it would have been my bat mitzvah. My sister had her bat mitzvah speech all ready to go and no one really knows this, but I had mine made up as well. I write all my work in my head and regurgitate it onto the screen. I even knew who I wanted to read my speech for me. At one of my sessions with Barb and Howie, I told them my goal. I told them I wanted Ellen DeGeneres to be my voice. Barb was shocked, and Howie said, “Okay, let’s talk to your parents and see what we can do.”
I started to write Ellen a letter and every time my finger hit the keys, I got more excited. Like I said before, I had the whole speech written in my head, but getting it on the computer seemed to take forever.
A couple of weeks before my bat mitzvah, my life changed forever. All my hard work, all the hard challenges I had to overcome to write my long speech felt worth it. My mother and father sat me down and told me that Ellen saw my letter and agreed to read it. There is no greater feeling than knowing you can do something that may have seemed impossible. From that day forward, I welcomed challenges.
My life had changed. I started to write on social media websites and writing my own blog. I felt that I needed challenges in my life so I challenged myself to be on Larry King Live and to even be invited to a conference called the Annual International Technology & Persons with Disabilities Conference at CSUN in San Diego. These challenges kept me thinking and knowing that I am capable of doing anything and everything I set my mind to. Well, I mean of course, my whole life I was told I wouldn’t talk and here is my voice talking to you.
My recent challenge has had to do with me attending a typical high school. In case you’re wondering if I succeeded with that goal, all I can tell you is the principal has chased me around the school and I broke the captain of the football team’s nose. Just joking. I made lots of friends this year and had my first real party at my house. I even went out to a movie with a group of friends and didn’t need a worker. As for schoolwork, I got A’s on a lot of my assignments and had a fun time learning.
A wise man once told me that a seed needs love and nurturing to become a flower and a caterpillar needs time and persistence to become a beautiful butterfly. So that’s why I say everyone has an inner voice that is waiting to come out and all they need is you.
Thank you for reading my dad’s book about my life, and I promise my book, written by me, will come out soon so you don’t have to read my dad’s chapters. Just joking.
Or am I?
A Conversation with Carly: The Truths and Myths About Autism
I’m not sure what to make of the fact that I’ve gotten to know my daughter more by conversations she’s had with others, answers to questions posed by strangers, and her blog posts than by any direct dialogue. I guess I’m j
ust grateful for the opportunity, however it comes. What I am certain of is that even at the young age of sixteen, Carly has already had a profound impact on those affected by autism.
Of the thousands of questions, words of support, and comments from Carly’s followers and readers through various social media channels, there seem to be several recurring themes. It has been Carly’s mission to help debunk the myths and share the truths about life with autism. Here are some of the observations I thought you might find compelling.
When it comes to the unusual behaviors exhibited by many who have autism, sometimes there is a method to their madness.
Q: dillon @CarlysVoice Hi Carly, i have written to you before, My question for you is this, My children have often overheard people say to us, oh you poor dears, we dont feel that way we feel very lucky. How do you as one who has autism feel when you hear this? I would like to have an idea how our boys feel at these times, as they dont speak but thru sign.
A: I hate when that happens my moms friend just had a tragic accident happen and she had one of her two autistic sons pass away and people told her its for the best. It’s really sad the way society views the importance of life just because he was different does not mean he did not have any importance or any things to teach us. We all have feelings even if we don’t often show it at times.
Q: kevin @CarlysVoice I have a 16 yrs who has a fascination with cards, numbering as like the clock on a VCR. Do you have any thoughts why?
A: Repetition is always a good way for us to stim. Visually stims like seeing numbers & repeating it in our head/out loud are always great.
Q: SgtMgt @CarlysVoice My 6yrold son gets sad and cries often, & I cant figure out why. Do U have any suggestions how I can figure out what is wrong?
A: It could be many things. Is he on any medication I have had lots of extreme mood changes like crying and being angry for no reason. It was because of the medication It could be things that are happening earlier in the day or days that he is just processing through now.
Q: SgtMgt @CarlysVoice When you are w/your family in public and someone seems curious, how do you prefer your family to address your situation?
A: To tell you truth I never really have had a talk with my family about that. If I am with my mom she will either tell them what is going on or tell my dad what morons they are. My dad just looks away from them and tries to move us on if he can. I think the real way to handle it is just to go up to them and tell them I am Autistic and answer any questions they might have. But sometimes I cant do that because I am to worked up.
Q: Bonnie1018 @CarlysVoice you mentioned you would miss a few things about being autistic . . . what would you miss? #Autism
A: I would miss spelling to some one 4 the first time & seeing there face. Setting a goal that every on thinks is to high and braking it.
Q: Momtweets @CarlysVoice What thing about being autistic do you like? What’s the worst thing about being autistic?
A: I like when I shock people because they think just because I’m autistic I am not smart. The worst thing is not being able to control my self even though I know what I am doing is wrong.
Q: caringchild @CarlysVoice Whats it like being a silent observer of things going on around U? When you found your voice did it open the world to U?
A: Being able 2 hear things that people don’t know I hear or I’m in the room but don’t think I hear them is cool some times. But some time you don’t want to hear things that you do. Spelling has helped open some of the world to me.
A person who cannot speak may still have plenty to say.
Q: manly7678 @CarlysVoice My 5yo daughter has #Autism & is non-verbal, but she has a definite spark in her eye. Your story fills us with hope.
A: I go to school every day with kids that are Autistic And some of them are non verbal but I have no doubt in my mind that they all have inner voices and they just need to find away to get there inner voice herd. So if you have a feeling your daughter has a inner voice don’t give up till she is heard.
Q: bearclaw @CarlysVoice At what age did u feel you had a breakthrough, even if u couldn’t voice it yet? #Autism
A: I think when I was around nine I really was able to audio filter what my sister had to say and I wouldn’t believe it.
Q: chag61 @CarlysVoice Please explain how you can organize your thoughts and type but you cannot speak . . is this a possibility for all who are autistic.
A: We all have the ability to spell. Work on simple words and make sure we are always around words. We are looking at things all the time.
Q: aaronr @CarlysVoice How did u learn 2 communicate so well on your PC & can low functioning kids w/#autism be taught likewise? Thx!
A: We all have a inner voice that needs to come out and we just need some one to believe in us and push us to get it out.
Q: Devina @CarlysVoice My brother has autism and he doesnt communicate with us in ways we understand. Any ideas/tips on what we can do? Thanks!
A: When I was younger I started talking with pictures. It was a great starting point on learning 2 spell bcs the pictures had labels on them.
Q: anne @CarlysVoice yes I have a question Carly. Do you think facilitated communication can be taught to anyone?
A: I don’t use facilitated communication so I really don’t know. I spell on my own with out any holding my hand or whispering in my ear.
The five senses are anything but independent of one another, especially for many living with autism.
Q: Tammy @CarlysVoice Carly, I almost don’t want to bother you because you seem like you will be busy for days answering all the questions we people have for you, but I hope you don’t mind me asking you anyway. You can take days to answer if you want. Take your time, no rush. Here is my question. My 14 year old is always using her hands like a puppet and talking to them. Besides humming, hand flapping, etc . . . what kind of environment or activities calm you the best? She reinacts a lot of the movies she sees with her hands speaking to them as if they were people. She holds her hands up in front of her face, almost like she were talking to someone. She does it all the time. I’m not sure what it’s about. Is this stimming? Is their a way to stop it? Should I stop it?
A: It sounds like your daughter is audio filtering. This is actually a good thing and don’t let any therapist or doctors tell you it isn’t. As she gets better at it her hands will stop moving and she will be able to understand your words and things around her better. Tell her I say keep it up girl friend.
Q: PatZ1 @CarlysVoice Besides humming, hand flapping, etc . . . what kind of environment or activities calm you the best?
A: Flapping and humming and rocking does not calm me down it helps me cope with stuff around me. #Autism
Q: DCxQueen @CarlysVoice My cousin has autism, she doesn’t like clothes at all, have you had trouble with that? Is there anything what could help?
A: I use to hate the feeling of clothing rubbing and tuching my body. Especially if they got wet. Get rid of tags. I like wearing shirts a lot better since I started wearing a bra. Feeling is still hard to put up with but i am getting use to it.
Q: Myseth @CarlysVoice Are you aware of dangerous situations like crossing the street and what you would need to do if a car was coming.
A: Yes, but that is really hard. 2 many sounds to take in & sights & smells & it gets over whelming thats why we have a hard time waiting.
Q: toni @CarlysVoice my little boy only eats toast. He will smell the food and not try it at all. He is nearly 4. I will try forever but why?
A: Lots of food can be over powering. See if you can find a dip he likes. Add it to different food even if its grouse to you.
Q: Tileguy12 @CarlysVoice Do you hum or spin? If so do you know what makes you do that? My son does it all day. Thanks.
A: Its a way 2 shut down all my other senses & just focus on one. Huming normaly is followed by covering your ear to change sounds. Its masking.
Q: Cjboy09 @CarlysVoice what kind of music do you listen to? calming ja
zzy type? pop? Etc.
A: I like lots of different music but it also depends on how I am feeling. I like stuff that has a beet or base when I need to stim. I find music at night that has calming voices helps me sleep and stay a sleep.
Q: DailyDose @CarlysVoice My 5yr old often stares off to the side not turning his head just using his eyes wide eyed and almost straining. Why?
A: When I was young I couldnt stare directly at things. I was looked out the corner of my eyes and even though U think hes not looking he is.
Q: DailyDose @CarlysVoice What do you mean when you say “i take over a thousand pictures of a persons face when i look at them”?
A: It’s the way I describe how we see. All the images come at us at once. It is so overwhelming.
Q: pressdough7 @CarlysVoice When stimming, what is going on? Is it relaxing, a need, defense mech., centering (proprioceptive) . . ? I’ll be watching in Aug.
A: Drs. have the definition of stimming wrong. Stims are when you make or create output to block sensory input or over load.
Q: jhannah5 @CarlysVoice Am i the only person with a child who dips pizza in hummus? Danny’s autistic so i guess that makes it OK, LOL!
A: Its funny you should say that. A lot of times when autistic children and adults eat food, we have a hard time with textures and smells. It can be a little over barring some times. We block these things out buy adding dips to mask the problem. I like dipping my pizza in mustard and at camp I dip my food in ranch dressing.
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