by Debra Muzikar
“Does Kevin know he’s autistic?” Keri Bowers asked me eleven years ago.
“Kevin is nine years old,” I said. “I don’t think he’d understand if I explained it to him.”
“It’s important you tell him,” she responded. “He needs to know why he’s different.”
This was a time when Kevin came home every day from school crying.
“Why don’t I get invited anywhere? I want to be like other kids, I want to have friends. I want to go to their home and play video games.”
The social skills training didn’t seem to help Kevin make friends. He felt lonely and excluded. It wouldn’t be until the next year I told Kevin about his diagnosis. I also told his entire fourth grade class.
“Artistic?” he asked.
“No…Autistic,” I said. “It allows you to see the world in a different way than most people.”
“Is that why I have an aide?” he asked.
“Yes, to help you in class.”
“I don’t want an aide. I want to be like all the other kids,” was his response.
I went on to explain to Kevin the strengths and deficits of autism. It didn’t seem to phase him.
Telling Kevin’s class was a little more difficult. Kevin’s teacher arranged for me to meet with Kevin’s class separate from Kevin. I received many questions.
“Is autism contagious?” one girl asked.
Others asked questions about why Kevin sometimes makes noises or flaps his hands. This made me realize why it’s important to give people information. Otherwise, they may have all kinds of misinformed thoughts. Fear is not autism’s friend.
“One child asked me if my son was going to die of autism,” a friend who spoke to her son’s class shared.
When I compiled The Art of Autism books I became aware of many autistic people’s stories. Relief at the diagnosis was a general theme among people who were diagnosed later in life.
“When I finally received the diagnosis, I felt blessed and relieved. The diagnosis meant I’m not crazy or psychotic – nor am I alone. . . I would’ve felt in the dark with the diagnosis if I hadn’t found Asperger’s so interesting. Receiving the diagnosis has been a liberating experience and has given me confidence,” Frank Louis Allen wrote. Others in the book echoed Frank’s words.
Yesterday a friend told me of an eight-year old boy who received a diagnosis of autism this week. His mom is struggling about how and when to tell him.
“I don’t want others to know he’s autistic. There is a stigma about autism and he can blend in right now,” she says.
I asked my Facebook friends what they thought about receiving the diagnosis and/or telling their child they have an autism diagnosis.
Andy Dreisewerd said he was told he was autistic when he was young and thought it interesting. “We are not on this planet to pass as typical,” he writes.
April Dawn Griffin writes “It’s nothing to be ashamed of. I told my kids right away…It helps to explain behaviors others find odd and its best to be honest. I was diagnosed late – I did know I was different and was reading psychology books from a young age because I worried about why.”
Linda Anderson says “Brent was diagnosed at 13 and he probably fully understood it at 19-20. He says it was a huge relief To know why he is so smart!!”
Marge Pamintuan, mom to five-year old Eddie, says “I explained it to Eddie in simple terms, how he thinks and feels the world in a different way. You know what he tells me? ‘I am autism, Mommy.'”
Martha who was diagnosed at age 50 writes “It would have helped me immensely to understand that I had some problems related to different neurological wiring, rather than being a weirdo or a loser. I learned to cope well throughout my life, but there was always so much strain…If you have ANY variety of autism, you KNOW that you’re different from other people.”
Rachel writes “I wasn’t diagnosed with Asperger’s until I turned 40. My mother is probably as well but remains undiagnosed. We both grew up being taught by our mothers to embrace our eccentricities. I learned to be (mostly) proud of my weirdness. In some ways it made me a target and also won me friends because of my confidence in being me. The flip side is I missed out on getting some of the supports I could have used during school. While I was bright and curious I now know I had a processing disorder.”
Marilyn told her son from age three. “We had tested for many things and I always told my son what we were testing for, the strengths and challenges… it was at a level he could understand. Self acceptance and understanding being the key reason.”
Giving a child the information they need to navigate a complex sensory and social world can only help that child.
Last year in Kevin’s College Success workbook, he wrote this about his autism. “I’m lucky I’m autistic because I see the world different than other people.”
Perspective is everything.