Understanding autism


What those in the know want the rest of us to know about the disorder

Griffin 2

Autism Awareness Month has come to an end, but those who deal with autism every month have a few things they would like 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:

trianglesWendy K. and Jimmy: A journey of hope

“Our concerns particularly arose over (Jimmy’s) language regression,” said Wendy K. of Australia, the mother of Jimmy.“That took us to the path of seeking the advice of a pediatrician who, on our very first appointment, said, ‘Your son has autism.’

“He painted a fairly bleak picture for our son. As it turned out, our boy is at the most severe end of the autism spectrum and has needed some very specialized help during the years.

“I said to my husband, ‘I want to come to the U.S. (from Australia).’ I’ve heard this is where great programs are, and in particular, I’d heard about the Behavior Analysis Center for Autism (in Fishers). And what I saw just blew me away.”

Scott Dueker, Jimmy’s therapist from BACA in Fishers, spoke of Jimmy’s progress.

“When his mom tells me something he (Jimmy) has done at home, that he’s learned here and he’s translating to home, it makes me feel wonderful because we know he’s learning,” Dueker said. “He’s gaining generalization skills. The things he’s learning here he can take into his home and into the community and be successful.”

scan0002Sharon and Steve: Those who make a real difference

“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 meltdown 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!”

PBJane Webb and Griffin Nickels: “My Brother is Artistic”

“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 makeGriffindifferent. 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.pdfand www.handsinautism.org/pdf/sensoryman.pdf.

snowMelanie 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 11-year-old Jason. “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, a safe environment 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 ‘He or she is weird.’ I would like their thought to be, ‘Hmm, that’s different; I should try to understand how to be his or her friend.’

“We got help very early – age 3. My attitude has always been 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.”