Carly Fleischmann: Autistic Girl Who Used A Computer To Ask For Help (Updated)

Carly Fleischmann: Autistic Girl Who Used A Computer To Ask For Help (Updated)

Apr 02

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April 2, 2014 Update

Environmental Toxins Linked to Rise in Autism (Backup Copy)
By Dr. Mercola
Mercola.com
April 2, 2014

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IMPORTANT RELATED STORY FROM 60 MINUTES:

Apps for Autism: Communicating on the iPad

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YouTube Preview Image

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Carly was a severely autistic little girl unable to speak a word or connect to the world around her in any way. Or so everyone thought. That is until she turned 11 and something truly remarkable happened — she typed her first words: ”h-u-r-t” then ”h-e-l-p.”

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RELATED LINKS:

Carly’s Blog
Carly on YouTube
Carly on Twitter

• Evidence-Based Practices for Children, Youth, and Young Adults with Autism Spectrum Disorder (pdf)
Pulse on Autism

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TEEN LOCKED IN AUTISTIC BODY FINDS INNER VOICE

Unable to Speak or Connect to the World Until Age 11, Carly Fleishman Types: ‘I Am Autistic But That Is Not Who I Am’

By Alan B. Goldberg And Lauren Putrino
ABC News
August 6, 2009

Original Link

Her finger hovers over the keyboard, sometimes for hours, before she painstakingly begins to type:

“You don’t know what it feels like to be me, when you can’t sit still because your legs feel like they are on fire or it feels like a hundred ants are crawling up your arms.”

Something extraordinary happened to Carly Fleischmann, a severely autistic 14-year-old who, unable to speak, was once written off as mentally deficient.

“It is hard to be autistic because no one understands me. People look at me and assume I am dumb because I can’t speak.”

There are experts and skeptics who believe that nonverbal people like Carly are incapable of thinking or writing.

“I think people get a lot of their information from so-called experts but if a horse is sick, you don’t ask a fish what’s wrong with the horse. You go right to the horse’s mouth.”

Her words may never have been found if not for the relentless determination of her family, who never gave up on her. Carly’s story is how one child found her way out of the dense forest that is autism, and how her experience may unlock the mysteries of this baffling disorder.

Diagnosed with Autism, Carly Lost in Own World

Born in Toronto, Carly was 2 years old when it became clear she wasn’t keeping up with her twin sister, Taryn. When her parents, Arthur and Tammy Fleischmann, learned the diagnosis was autism they expected the worst — that one of their twins would never achieve milestones most take for granted.

“When you’re told your child is going to be developmentally delayed, that they might achieve the developmental level of a 6-year-old, it’s like being kicked in the gut,” Carly’s father recalls. “And so for us, we have expectations of one child who’s going to grow up and be independent and accomplish things that she wants in life, and one child, a big mystery, what’s going to become of her.”

In the beginning, Carly’s delays prevented her from walking and sitting up, but as she grew, it became painfully clear that Carly couldn’t speak. Like most autistic children, she was lost in her own world, perpetually swimming under water.

Experts told the Fleischmanns that early intervention was critical, and since Carly was 3, her therapy has been intensive and unrelenting, sometimes working with three to four different therapists daily for up to 60 hours each week. Her team, nicknamed Carly Inc., would constantly change therapies that weren’t working and streamline the ones that did. Carly made small gains, but nothing that ever seemed like real progress.

“When you look in Carly’s eyes, you can see an innate intelligence. So we never gave up,” her father recalls.

But if there was intelligence, Carly’s ceaseless rocking, flailing arms and tantrums hid any trace of it. Worse, she couldn’t speak, not one word.

Intensive Therapy Attempts to Find Way for Carly to Communicate

For many years, Nicole Walton-Allen, a clinical psychologist, led Carly’s therapy program.

“Her profile was that of a child who was severely autistic and more than likely moderate mentally retarded,” Walton-Allen told “20/20.” “I did not have any expectation that she would have a fluent form of communication. She was getting up and running around. Her hands were constantly in motion, flapping. She was drooling.”

Raising a child like Carly in a house with two other children wasn’t easy. Both parents were trying to make a living and keep the house going. Many nights Carly only slept four hours and, unable to control herself, still displayed disruptive behaviors. The family felt lost. Friends had suggested that they place Carly in a group home or institution, an idea her parents rejected.

“A 7-year-old in a group home, it’s horrifying. The thought of that is horrifying, giving up your child. I could never do it. Never do it. How can you give up your kid? No, no. You just keep persevering, you know,” an emotional father explained.

Most frustrating was Carly’s inability to speak. Her therapists desperately needed to find some way for Carly to communicate her thoughts. Thousands of hours over months and years passed, and Carly’s progress was excruciatingly slow.

Breakthrough: Carly Emerges from Silent, Secret World

Therapists introduced picture symbols that would allow her to communicate her needs. For example, if Carly wanted chips, she would point to the picture of chips.

But then one day, three years ago, when Carly was 11, she was working with two of her therapists when she started to feel sick. Unable to communicate what she needed, she ran to a computer and began to type for the first time.

First she typed the word “H-U-R-T” and then “H-E-L-P” and then she threw up. Her therapists were shocked: They had never specifically taught her those words, and they wondered where she had learned them.

Carly’s typing showed them that there was a lot more going on inside her head than they had thought. For the first time she was able to communicate independently. After nine years of intensive therapy, and not much to show for it, Carly was finally emerging out of her silent, secret world.

When first told of Carly’s breakthrough, the family didn’t believe it. They had every right to be skeptical. Carly refused to repeat the exercise for her parents and her other therapists.

Because nobody apart from two people had ever seen it, the skeptics were desperate to see proof. Going forward, the plan was to use tough love to get Carly to type. If she wanted something, she had to type for it. And it worked. Several months later, Carly started to type, and what came through her finger, typing one letter at a time, with fluency that no one could believe, was simply remarkable.

Carly: “I am autistic but that is not who I am. Take time to know me, before you judge me. I am cute, funny and like to have fun.”

Typing Unlocks Mystery Behind Her Behavior: ‘I Want Something that Will Put Out the Fire’

Through her torrent of words, Carly began to unravel some of the mysteries behind her often wild behavior, like banging her head.

Carly: “Because if I don’t it feels like my body is going to explode. It’s just like when you shake a can of coke. If I could stop it I would but it is not like turning a switch off, it does not work that way. I know what is right and wrong but it’s like I have a fight with my brain over it.”

Carly started to realize that by communicating she had power over her environment, and she wasn’t shy about expressing her desires and frustrations.

Carly: “I want to be able to go to school with normal kids but not have them getting upset or scarred if I hit a table or scream. I want to be able to read a book by myself without having to tell myself to sit still. I want something that will put out the fire.”

For the first time, Carly was able to have conversations with her parents, even instant-messaging her father at his office. Her family stopped looking at her as a disabled person and instead met the funny, sassy, intelligent girl that had been trapped inside. They also said they were “horrified” that for most of her life they spoke in front of her as if she wasn’t there.

Carly: “I want people to know that no one is telling me what to say and I don’t have a hand up my butt like a puppet.”

Despite Progress, Constant Care Still Needed

For all her progress communicating, Carly still needs constant supervision. A family member or aide is always at her side, directing her through simple daily tasks like brushing her teeth, fixing her hair, even eating. Nothing is easy. But like most teens, Carly likes music, boys, clothing and of course going to the mall.

Carly has been very clear that she sees herself as a normal child locked in a body that she has little to no control over. So in public, everything has to be broken down and planned to control her impulses. In the past she has wandered off, even stolen goods.

Side by side with her twin sister, Taryn, it would be easy to dismiss Carly as intellectually challenged. That is, until you ask her a question. For instance, Why do autistic kids cover their ears, flap their hands, hum and rock?

Carly: “It’s a way for us to drown out all sensory input that over loads us all at once. We create output to block out input.”

Carly’s brain, unlike most of ours, is overwhelmed by the senses of sight, sound, taste, smell and touch. She calls it audio filtering.

Carly: “Our brains are wired differently. We take in many sounds and conversations at once. I take over a thousand pictures of a person’s face when I look at them. That’s why we have a hard time looking at people. I have learnt how to filter through some of the mess.”

To help keep Carly calm — and keep her impulses in check — she listens to music, swims and even does yoga, which has helped with her breathing and posture.

Carly’s family and therapists emphasize that no one is physically directing her to type, as some skeptics, they claim, have suggested.

“This isn’t some spontaneous event,” Carly’s mother, Tammy, insists. “This is entirely Carly. No one is touching Carly’s fingers, no one is moving anything, no one is prompting her or telepathically insinuating what she should type.”

Dr. Nicole Walton-Allen, an early skeptic, concedes: “In retrospect, it is quite clear that Carly obviously had skills that we were not aware of and she needed a vehicle to express herself.”

Sense of Humor, Awareness Baffle Doctors

One of the things that makes Carly so unique is her tremendous sense of humor. For instance, this exchange with her therapist:

Barb: “How cute are you?”

Carly: “I’m so cute blind people stop and stare.”

Her brother Matthew is also a favorite target.

Carly: “Matthew smells so bad skunks run and hide.”

Besides her obvious spunk and tenacity, Carly is empathetic and recognizes the love and sacrifice her family has made for her, something she conveyed to her father on his birthday.

Carly: “Dear Dad, I love when you read to me. And I love that you believe in me. I know I am not the easiest kid in the world. However you are always there for me holding my hand and picking me up. I love you.”

“I’ll go through many sleepless nights to hear that. I’ll spend every penny we have to hear that,” Fleischmann says.

He also notes that Carly’s breakthrough was the result of thousands of dollars spent on years of intensive therapy. It’s the kind of money most families unfortunately could never afford to spend on their autistic children.

A year after we first met Carly, she is happier, calmer and more independent. She also has her own internet blog and twitters regularly, answering questions from people all over North America about her experience with autism.

And Carly continues to mesmerize people by trying her hand — that is, her finger — at writing a novel called “The Elephant Princess.”

But experts we spoke to said Carly’s abilities are extremely rare and that her case should not raise false hope.

The Fleischmanns know that Carly is not out of the woods. She will likely require considerable support for the rest of her life. But Carly knows that she now has a voice that can help other kids. She looks at herself as someone who can make a mark on the world.

Carly: “I think the only thing I can say is don’t give up. Your inner voice will find its way out. Mine did.”

Selection from Carly’s Forthcoming Novel “The Elephant Princess”:

“I want you to close your eyes and imagine a girl all alone in the middle of the jungle. All she can hear are the sounds of the animals. But what she does not know is that the sounds aren’t just random sounds. In fact, the animals are talking to each other. People think that a lion’s roar is its way to scare you. But let me tell you from experience that a roar is not just a roar. Actually a roar can mean many things depending on the tone. I think that humankind is just oblivious to things that have been around for many years. I think humans are so silly. See us animals are much smarter because we understand what is going on around us. But that’s another story for another day.”

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AUTISM BREAKTHROUGH: GIRL’S WRITINGS EXPLAIN HER BEHAVIOR AND FEELINGS

Doctors Amazed By Carly Fleischmann’s Ability To Describe The Disorder From The Inside

By John McKenzie
ABC News
February 19, 2008

Original Link

Carly Fleischmann has severe autism and is unable to speak a word. But thanks to years of expensive and intensive therapy, this 13-year-old has made a remarkable breakthrough.

Two years ago, working with pictures and symbols on a computer keyboard, she started typing and spelling out words. The computer became her voice.

“All of a sudden these words started to pour out of her, and it was an exciting moment because we didn’t realize she had all these words,” said speech pathologist Barbara Nash. “It was one of those moments in my career that I’ll never forget.”

Then Carly began opening up, describing what it was like to have autism and why she makes odd noises or why she hits herself.

“It feels like my legs are on first and a million ants are crawling up my arms,” Carly said through the computer.

Carly writes about her frustrations with her siblings, how she understands their jokes and asks when can she go on a date.

“We were stunned,” Carly’s father Arthur Fleischmann said. “We realized inside was an articulate, intelligent, emotive person that we had never met. This was unbelievable because it opened up a whole new way of looking at her.” This is what Carly wants people to know about autism.

“It is hard to be autistic because no one understands me. People look at me and assume I am dumb because I can’t talk or I act differently than them. I think people get scared with things that look or seem different than them.” “Laypeople would have assumed she was mentally retarded or cognitively impaired. Even professionals labelled her as moderately to severely cognitively impaired. In the old days you would say mentally retarded, which means low IQ and low promise and low potential,” Arthur Fleischman said.

Therapists say the key lesson from Carly’s story is for families to never give up and to be ever creative in helping children with autism find their voice.

“If we had done what so many people told us to do years ago, we wouldn’t have the child we have today. We would have written her off. We would have assumed the worst. We would have never seen how she could write these things  how articulate she is, how intelligent she is,” the grateful father added.

“I asked Carly to come to my work to talk to speech pathologists and other therapists about autism,” said Nash. “What would you like to tell them? She wrote, ‘I would tell them never to give up on the children that they work with.’ That kind of summed it up.”

Carly had another message for people who don’t understand autism.

“Autism is hard because you want to act one way, but you can’t always do that. It’s sad that sometimes people don’t know that sometimes I can’t stop myself and they get mad at me. If I could tell people one thing about autism it would be that I don’t want to be this way. But I am, so don’t be mad. Be understanding.”

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YOU ASKED, SHE ANSWERED: CARLY FLEISCHMANN, 13, TALKS TO OUR VIEWERS ABOUT AUTISM
ABC News
February 20, 2008

Original Link

Carly Fleischmann, 13, is autistic, but after years of training, is able to articulate her feelings and thoughts. She provides rare insight into a world few people understand, and she answered some of our viewers’ questions below.

Question: “Millions of people saw your story on ABC News. Thousands have written letters of thanks to you. You are an incredible inspiration to so many families. Everyone is very proud of you. How does this make you feel?”

Carly: “I am so happy. I got a big gift from people around the world. Among so many kids with autism they chose me to be an advocate for autism. Where should I get behind a cause like this? I am so glad that I am able to help people understand autism.”

Question: “Hi Carly, after years of not being able to speak, what does it mean to you to be able to tell people what you want to say?” — Greg from Erie, Penn.

Carly: “greg it feels so awesome to ask for things. So how do you speak?”

Question: “Carly, I am so happy you found a way to communicate with those around you! My question is what was it like dealing with autism and coping with the frustrations of not being able to communicate your thoughts, feelings, desires and dislikes to your loved ones?” — Ailyn from Miami, Fl.

Carly: “Ailyn it just sucks when I am alone. I feel very sad when mel goas away. I always yell when I feel like people so don’t understand why I am sad.”

Question: “What can you suggest to me, as a teacher and a parent of young teens with autism to help them?” — Jerry and Marieanne Vincent

Carly: “be patient. Try getting a computer. Give them chips when they type.”

Question: “What one thing do you think my autistic child would want me to know about him?” — pgklim

Carly: “I think he would want you to know that he knows more than you think he does. He is lucky to have nice parents.”

Question: “Do you believe the behaviour therapy helped you and do you think intensive therapy has anything to do with you not only finding a voice, but knowing what to say now that you’ve found the means?”

Carly: “I think behavior therapy helped me. I believe that it allows me to sort my thoughts. Unfortunately it can’t make me normal.”

Question from Carly’s therapist, Mel: “Carly, you have come so far in the last year with all your success. Why do you think in the last year or so you’ve come so far and are able to communicate with more and more people?”

Carly: “because first howie (Carly’s therapist) believed then dina (another therapist) did. Believing helped. Then time went by and dina left and time went by. Then a miracle happened you saw me type. Then you helped me forget that I’m autistic. You treat me like I’m normal.”

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12 comments

  1. thanks for your time for providing valuable info about the topic. I am a fan of ones website. Keep up the nice job.

  2. Rebecca Boyd

    Hello, Im a mother of two beautifull austic kids, one is a 14 yr old boy, and my other one is a 8 yr old girl. Your amazing courage, and inspiration has encouraged me to try this new way of communicating with my kids. Thank you.

  3. Hi Rebecca. Be sure to check out this story from 60 Minutes: “Apps for Autism: Communicating on the iPad” – http://bit.ly/tI9BeD

  4. Hi David ~ Once again, you’ve chosen an important topic to highlight. I’m really glad to have seen these video clips. My sister has a son with cerebral palsy. He is 28 and can only say a few words. His situation seems similar enough to the autistic kids that i wonder if using an iPad might help him as well. I ‘m going to recommend this to my sister, to look into.

    Thanks for all you do!

  5. Glad you’ve found this page helpful, Bonnie. Here’s hoping the information posted here can help your sister and her son. I can only imagine how challenging and difficult things have been for all concerned, especially your sister. Tell her hi for me…

  6. Kassie

    Carly’s story is amazing. . . I’m not autistic, but I feel like this is an amazing real life story that people need to see. Autistic children seemed to be under-looked and passed by as if they didn’t exist. Carly, if you ever see this, you are an amazing person and I wish you the best of luck.

  7. Aariel Williams

    I love Carly’s story. It was so inspirational. I have autism, except I have HFA. I didn’t talk until I was four and have two remarkable savant skills: art and calendar memory.

  8. wandy

    Simply amazing!!!:)

  9. dylan

    Hi Carly. Your story astounds me, and may change our society’s perspective on people unable to speak. My name is Jacob, and I have “Asperger’s” (form of autism). I’m verbal, but I struggle with many similar things as you. I stimm, yell, bite my fingers, hit my head, have sensory overload, and avoid eye-contact. I think if you didn’t have apraxia, you’d also be labled “Asperger’s” (milder autism). Many kids with nonverbal autism don’t have apraxia, and suffer more with cognitive skills as simple as up and down, or night and day. Don’t think you’re at rock botton because you’re most certainly not! I’ve seen far more severe cases of autism than yours.

  10. dori gearwar

    I saw Carly yesterday on the TV show the Doctor’s I was just simply blown away by Carly. God Bless her and stay strong you have paved the way for the entire world to better understand autistic children. Dori

  11. mavi

    My mom died this September. I have ASD. My father, auntie, brothers, uncle and grandfather are asking me to resume school. I am in 4th year hi school in the Philippines. I refuse to go back. Please help me.

  12. Kimberly

    My brother is autistic . I never understood why he did the things he did but I always knew he could communicate by written word .he could write letters just like Carly types words her story touched me because she is helping the world see there is a person inside that wants to get out . I often feared what I couldn’t understand in some ways it’s hard being a family member just as much as the disabled person in some ways because of the lack of communication and out bursts . I’m thrilled for Carly and I’m buying the book she wrote in hopes of understanding what my brother maybe experienceing so I can help him more.

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