What those in the know want the rest of us to know about the disorder
Autism Awareness Month has come to an end, but those who deal with autism every month have a few things they want others to remember all year long. With one in 88 children diagnosed with autism, the situations that arise from dealing with this disorder are not simply left to parents alone.
Current asked what those more familiar with autism would want the rest of us to learn and understand. Their responses follow:
“A lot of people talk about people with autism as patients. I don’t think our kids are sick. There’s nothing about them that’s not whole,” said Mary Rosswurm, executive director of the not-for-profit Little Star Center in Carmel.
A parent of a child with autism, Rosswurm understands firsthand the challenges that such parents face. Often the first challenge, she said, is deciding to see a physician.
“Parents need to not wait,” Rosswurm said. “If they think there’s something going on, they need to get (their children) diagnosed. Early intervention is key.”
Rosswurm also said a recent boom in the creation of centers for autism has made it difficult for parents to know where the best place is for their child to go.
“I think it’s scary right now that centers treating autism are popping up all over the place, because it’s a specialty, and people are doing it for profit,” she said. “Right now it’s easier in Indiana to open up a center and say you serve kids with autism than it is to open a dog care center.”
Nevertheless, finding the right place for their children can be one of the most important decisions parents make, Rosswurm said, and can go a long way toward lightening some of their load.
“My goal at the end of the day is to be the soft place for parents to fall,” Rosswurm said. “They have so many battles … I want this to be the easy part of their day.”
More information about Little Star Center can be found online at www.littlestarcenter.org. Look for a profile on the nonprofit in the May 15 edition of Current in Carmel.
Sharon and Steve
Editor’s note: The names in this section have been changed at the request of those interviewed.
“Steve is a very highly functioning Asperger’s (syndrome) kid,” said Sharon of Noblesville, mother of Steve. “Too often, his behavior has been classified as ‘bad’ and as his mom, I was judged as allowing ‘bad’ behavior.
“We went through many years when Steve’s tendency toward meltdowns and violence – stemming from frustration at not ‘getting’ the world – inhibited the whole family. Outings sometimes resulted in judgment or well-intentioned advice at how to get back on track with my wayward child.
“Steve is much better now because of our determination to not let Asperger’s be the thing that defines him. The things I learned from our social worker and implemented at home were so helpful they inspired both of us to keep trying. As the stress level in Steve’s life slowly reduced, he was able to gain more control over his response to frustration. We’re on a good path and have lots of tools.
“The thing that helped me the most during the years was when people took seriously my suggestions and guidance about how to deal with Steve. Often, teachers or day care workers would ask for help in dealing with him. I spent a lot of time and effort trying to pass on the tools I had learned, but often, my comments were rejected. On the other hand, when an adult tried my suggestions, very often Steve would respond positively. I am so grateful for those people – they made a real difference in Steve’s life!”
Jane Webb and Griffin Nickels
“I was a school teacher for 27 years. While I was teaching, I discovered I really had a passion for children with learning challenges,” said Jane Webb of Noblesville, author and friend of 15-year-old Griffin Nickels. “I developed as a teacher and as a person just as a result of having them (children) in my class. One of my students with autism had a younger brother. When this younger brother would visit us in class, he would say ‘My brother is artistic.’
“I found there are not a lot of books, especially picture books, designed to help create an understanding of autism. That basically is how the book ‘My Brother is Artistic’ came to be. The passion I have for children with autism, the desire to increase awareness and the lack of resources all propelled me forward to write this book.
“Beth and I are good friends. When the manuscript was done, I called her to get her opinion. When I finished reading it, there was dead silence on the other end of the phone. She was crying because she was so touched by the book. It was her that asked if her son Griffin – who has autism – could do the pictures. I was reluctant at first because I wasn’t sure how he would do with deadlines, or having to change a picture. It ended up working out beautifully.
“Autism does make Griffin different. He would be teased and shoved around. Because of the book, his classmates now see him as a famous illustrator. Just ask him and he’ll tell you – he is the most famous illustrator in Noblesville.”
The book “My Brother is Artistic,” written by Webb and illustrated by Nickels, is available online at amazon.com and barnesandnoble.com. For more information on autism, visit www.handsinautism.org/pdf/WIAbrochure.pdf and www.handsinautism.org/pdf/sensoryman.pdf.