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Halo

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Girl's writings opening new window on autism

TORONTO ? A 13-year-old named Carly is challenging the conventional notions of autism, demonstrating emotional skills that lay hidden for years, until one day, a computer helped her reveal to the world what it's like to have her condition.

From an early age, it was clear Carly had autism. As a young girl, she would often rock back and forth for minutes on end, flail her arms and hit herself repeatedly. Equally troubling, she never gained the ability to speak.

Her father, Arthur Fleishmann, says many people who didn't know her assumed she was intellectually challenged.

"Even professionals labelled her as moderately to severely cognitively impaired. In the old days you would way mentally retarded, which means low IQ and low promise and low potential," he says.

Arthur and Carly's mother Tammy were advised to place her in an institution. Instead, they opted for an intensive therapy called ABA -- Applied Behavioural Analysis, the kind of therapy now recommended for kids with autism but because of the expense and the need for specially trained therapists, isn't available to all children.

While Carly made progress through the therapy, speech continued to elude her.

"We tried hard to get her to talk but it wasn't in the cards for Carly," says her speech pathologist Barbara Nash-Fenton.

Then, two years ago, Carly surprised everyone. Working with a computer equipped with pictures and symbols, she started typing and spelling words. At first it was just words -- help, hurt, head, teeth -- but soon she was assembling sentences.

She typed then as she does now -- slowly using only finger -- and the words she wrote stunned all who knew her.

"All of a sudden these words started to pour out of her," says Nash-Fenton. "And it was an exciting moment because we didn't realize she had all these words."

"It was one of those moments in my career that I'll never forget."

Writing reveals secrets of autism

As Carly learned to write better, she began describing what it was like to have autism and why she does what she does, such as making odd noises and hitting herself.

"It feels like my legs are on fire and a million ants are crawling up my arms," Carly has written about the urge to hit herself.

"I want to be like Taryn," she has written of her twin sister, who does not have autism.

With her single typing finger, Carly has been able to demonstrate her emotional intelligence and witty sense of humour to a family who says they were stunned by what she revealed.

"We realized that inside was an articulate, intelligent, emotive person that we had never met. She was 10 at the time, and we just met her for the first time at 10 or 11 years old," says her father Arthur. "This was unbelievable because it opened up a whole new way of looking at her."

Through her writings, Carly has joked about her "yucky" siblings, shown that she understands their jokes and revealed a curiosity about boys -- even asking when can she go on a date.

"Inside, she is a perfectly normal 13-year-old girl. She has crushes, she likes music, she wants to be treated like every other 13-year-old," says her father.

Carly also has expressed her frustration about her condition and about how the world misunderstands her.

"It is hard to be autistic because no one understands me," she writes. "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. It feels hard. It feels like being in a room with the stereo on full blast."

Autism specialist Dr. Wendy Roberts has read some of Carly's writing and watched her on video. She says Carly is certainly unique in her abilities and provides some fascinating insights into the condition of autism.

"I think the initial reaction is that it is incredibly remarkable," she says. "It is amazing to think that somebody who has not been able to put her thoughts into words now has a mechanism to get some of her ideas across."

Roberts says it's unclear whether Carly's unusual language abilities makes her a rare case or whether her new writing skills are the result of her intensive training.

She says it's rare for someone with autism to have apraxia -- the inability to speak despite an understanding of language -- as well as such an obvious command of written words. Roberts says it may be that Carly possesses unique abilities that make her a rare case, or it may be that her early and intensive training simply drew the skills out.

"What she does is quite uncommon but there hasn't been a really good look at kids with severe apraxia to see what could they be taught with intense teaching," says Roberts. "And that really begs the question of are we giving children enough intensive intervention to see if we are missing a fairly small percentage of kids who have this ability. There may be children being missed because they have not had access to therapy."

"From a broader perspective it puts pressure on us to develop interventions that will allow written language to develop... so that we can develop more effective interventions."

The benefits of ABA therapy

Carly's parents say they are so grateful that their daughter was able to discover this way to communicate because it has made them rethink autism and made them realize that they made the right decision to provide Carly with intensive therapy.

"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," says her father Arthur. "Then what would she be today?"

"We never would have seen she could write these things. Can you imagine? We would have never have gotten out of her how articulate she is how intelligent she is," he says. "Now, she tells us stories, she teases her brother. She just does it in a different way, she does it with her computer."

Carly's writing has progressed so far in the last two years, she's now starting to write a book. It's a take-off on herself and she's already come up with the title: "Elephant Princess."

Her writing has also helped her therapists help her more effectively.

"We've actually learned a lot about Carly," says her therapist Howard. "Since she has been able to type she has been telling us how it feels to be in her skin -- like ants are crawling up her arm. For us, this is very important. It helps with how we treat Carly, even how doctors treat Carly.

"I think Carly has a lot to teach us."

Carly has said she would like to tell the world about what it's like to have autism, so that others can understand what it's like.

"Autism is hard because you want to act one way but you can't always do that," she has written.

"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 me that I don't want to be this way but I am. So don't be mad. Be understanding."
 

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