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Living with autism
When Ashley, of Thomasville, was diagnosed with Autism 13 years ago it was estimated that only 4 children in 10,000 developed the disease. Today, estimates claim as many as six in 1,000 children are autistic. Some believe the rise in cases is due to better diagnoses and a wider range of cases that are now known to be related. Others believe environmental factors are playing a role. Whatever the cause for the increased number of cases, parents like Linda and Jerry Edwards who have an autistic child say more awareness of this little-understood condition is needed. Like many parents, Linda Edwards believes Ashley's early vaccinations, especially MMR (measles, mumps, rubella) vaccine that once contained a mercury-based preservative called thimerosal are the cause, but no explanation yet for the cause of autism and its related disorders has been embraced by the medical community. "She got so sick for a week after the vaccination, and she was different afterwards," Edwards said. "I'm convinced the MMR vaccination had something to do with it." Edwards also doesn't believe some claims that autism is currently being over diagnosed. "There are stigmatisms (repetitive, obsessive movements often with the hands in many cases) that are attached to autism." The early diagnosis was heartbreaking. "We didn't have the Internet back then, and I got a book out of the library that was written in 1974 about autism. It basically said autistic children would just have to be put away," Edwards said. Since that time the Edwardses have learned much about the condition, reading current research, and attending sym- posium on the condition. The hidden blessing was that Ashley was the Edwardses youngest child. "If she had been in the middle, I wouldn't have been able to give younger children the attention they would have needed," she said. Taking nothing for granted Imagine for a moment not being able to recognize the emotions on people's faces. Think for a moment about all the slang and euphemisms most of us use in our day to day communication and imagine taking it all literally, or having no concept of what even basic words mean. Ashley has had to work through all of that. "We had to label everything, what words meant, what actions were" Linda Edwards said. "We made plates with different facial expressions on them to learn what emotions were being displayed." In the early years there were also the tantrums autism brings and the difficulty socializing with other children. In elementary school, "they ignored me," Ashley said. After elementary school, Ashley was home schooled. "She learned to read in school and we've worked a lot on learning new words," Linda Edwards said. She gets out the "word bank" a box of index cards with words written on the front and the definitions written on the back. "Sometimes we'll spend a day learning about a new word. We'll look at the definition and find the meanings of those words to help her learn." But she hasn't been alone. Edwards said living in a small town has made it easier. "When word got around about Ashley, people wanted to help, they care here. I think if we were living in a big city, we'd be all alone with it." The Velveteen Rabbit When Linda Edward read the story of the Velveteen Rabbit to Ashley years ago, she cried. The story is of a young boy's stuffed toy rabbit, who wants to be real and learns he is different from the real rabbits. "Ashley said she feels like the Velveteen Rabbit," Edwards said. "She knows she's different from other children, but she's learned to accept herself and love herself." Ashley said it can be difficult for her to talk to other kids. "I'm shy," she said. "Sometimes I want to talk to people, but I don't know what to say." If she could change something, "I would change my personality, because I'm too shy." The future Edwards fears the day when this young woman with autism is an adult with autism without her mother. "Children with autism or Downs Syndrome get a lot of sympathy and support from the public at large, but adults don't," she said. "I worry about her life as an adult and what it will be like."
There is no cure for Autism, and it never stops making demands on family and friends. Edwards goal for her daughter is as challenging as it is simply stated. "I just want her to reach her full potential."
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