What those in the know want the rest of us to know about the disorder
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 in the know’ would want the rest of us to know. Their responses follow.
Jane Webb and Griffin Nickels – “My Brother is Artistic”
“I was a school teacher for 27 years. While I was teaching I discovered that I really had a passion for children with learning challenges,” said Jane Webb, author and friend of 15-year-old Griffin Nickels of Noblesville. “I grew 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 that 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 raise 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, 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 get made fun of 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 Jane Webb and illustrated by Griffin Nickels is available online at www.amazon.com and www.barnesandnoble.com.
“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.”
Sharon and Steve – “Those who make a real difference”
*Editor’s note: The names in the remainder of this story have been changed at the request of those interviewed.
“Steve is a very highly functioning Asperger’s kid,” said Noblesville resident Sharon, mother of Steve, 13. “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 melt-down 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 that 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 over 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!”
Melanie and Jason – “Treated with kindness and understanding”
“People on the autism spectrum did not choose to have autism. Their daily life is a struggle as they cope with sensory issues, lack of communication skills and more,” said Melanie of Noblesville, mother of Jason, 11. “How would others feel if they had to deal with constant noise that literally hurts their ears, tags and threads on clothing that feel like a knife, etc.? That’s why we see unusual behavior. They are trying to cope. They are loved and cherished by their family members who often work day and night to provide an atmosphere of love, an environment that is safe and a family life that is somewhat ‘normal.’
“I would like to see all people be treated with kindness and understanding regardless of their diagnosis. I have done many presentations at Jason’s school, and I always stress to the kids that usually when they see someone acting different, their first thought is ‘They are weird.’ I would like their thought to be ‘Hmm, that’s different; I should try to understand how to be their friend.’
“We got help very early – age three. My attitude has always been that we would not let autism define our family. It has, though, in so many ways, but we just try to work around things and carry on. I have never been hesitant to get help when I need it.
“Two times that I can think of I had someone be so kind to me when Jason was having a ‘moment.’ Just to have people be less judgmental (you can feel it) would be enough.
“I wish others would try to find a way to enjoy the differences and be a better person because they got to meet someone who is special.”