Meet Carly, a 13-year old girl who has managed to challenge what experts think they know about
autism. What they have learned from Carly both stuns and excites them, because with the help of computer technology and behavioral therapy, this young girl has opened a window to the autistic world and revealed what it is like to be an intelligent,
“normal” girl trapped inside an autistic mind.
In Carly's case, conventional autistic behaviors such as rocking back and forth, self-hitting, and flailing arms were apparent at an early age. Many people, including doctors, assumed she was cognitively challenged . . . an assumption that held fast partly because she never developed the ability to speak. As a matter of fact, her autism was so severe her parents were advised that an institution may be the best place for her. Instead, they opted for
behavioral therapy - the type of therapy most often recommended for autistic children. And while Carly did make progress over the years, she never learned to speak.
But she did learn to write.Two years ago everything changed. In a move that surprised doctors and family, Carly found a way to voice her thoughts. It happened while she was working with a computer equipped with symbols and pictures she used as part of her therapy. Suddenly, she began spelling words. At first her communication was based solely on single words, but over time Carly began to write sentences with a stunning display of vocabulary. A computer program gave a “spoken voice” to her writing.
Carly's words made it very apparent that she was indeed intelligent and understood what was going on around her. She wrote that she could understand her sibling's jokes and even sent her father an email asking when she could go on a date – something most every 13 year old thinks about.
But perhaps the most revealing aspect of her new communication skills was her describing what it's like to have autism and why she behaves as she does.
Carly explains her behaviors. "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.
"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."
Autism advocacy.Carly has a lot to teach the world about autism and could very well shed some much-needed light on the mysteries of the disorder - just as Temple Grandin has done over the years.
Temple Grandin is known worldwide as the most accomplished adult with autism. Though she now has a Ph.D., she didn't speak until she was three and a half years old and communicated by screaming and humming. She was diagnosed with autism in 1950, and like Carly, it was recommended she be institutionalized. Also like Carly, her parents refused.
During Dr. Grandin's childhood, she managed to attract the attention of a mentor who helped her develop her talents and interests. She tells her story in her book Emergence: Labeled Autistic, which has been revolutionary in changing how autism is viewed. Dr. Grandin is living proof that autism doesn't automatically slam doors on personal or professional achievement.
Now she is a much sought after public speaker and states, “I have read enough to know that there are still many parents, and yes, professionals too, who believe that 'once autistic, always autistic.' This dictum has meant sad and sorry lives for many children diagnosed, as I was in early life, as autistic. To these people, it is incomprehensible that the characteristics of autism can be modified and controlled. However, I feel strongly that I am living proof that they can.”
One thing is for certain. Both Carly and Dr. Grandin offer much needed hope to parents of autistic children. As more is revealed about the thoughts and emotions of people with autism, the medical community will be much better equipped to help those afflicted live more fulfilling and rewarding lives.
