By Ileiren Byles
Staff Writer
No one really knows a thing about autism.
"We only know our children," said St. Albert resident Stacy Bodnar.
In a separate interview, Deborah Barrett-Jardine, president of the Autism Society of Edmonton Area, spoke the exact same words.
"Another mother will read what I have to say here and think I don't know beans," she said. "The range of autism spectrum disorder is so huge, no one has the same experiences."
Organizations that advocate for people with autism use coloured puzzle pieces as their symbol. 
"We use it because, for all of us, autism is a puzzle and we need everyone - every child, parent and professional - to bring their piece to the table," said Barrett-Jardine. "Our children are a puzzle to us. Sometimes there are moments of great lucidity, other times it's like they're on another planet. Some children are highly verbal and some won't ever speak. I knew a woman whose child died at about 40 years old and she never, ever heard his voice."

Altered states
The most common explanation of autism is simply that people with the condition do not connect with the world like the rest of us. Signals get crossed in the sensory department, most often making children hypersensitive to stimulation.
In the past decade, there has been a shift in thinking about autism, according to the Autism Society's Web site. Rather than seeing autism as a series of deficits in a person's functioning, autism is increasingly being thought of as a different way of thinking and processing. Adults with autism report being easily overwhelmed by a variety of sensory stimuli. Such an intense response to stimuli makes it exceptionally difficult for the person with autism to determine what stimuli are relevant and which can be ignored. 
"You know, when children are abused they can withdraw into themselves to protect themselves," said Barrett-Jardine. "I think that for these children, the overload of their senses is an abuse on their system and they withdraw into themselves literally and figuratively. When he was very little, my son would go down into the deepest darkest corner of the basement and that's where he was most comfortable."
Anthony Barrett, now 17, still doesn't talk much, but when he does the sensory links he makes are poetry.
"Black sky smells like licorice. Brown tastes like cinnamon," said Barrett-Jardine. "Colours are so important to him and he relates them to everything. It's probably a big portion of his world."
For Kyle, sensory overload made him averse to new situations.
"We couldn't do anything new. We couldn't go anywhere. He would scream for two hours," said Bodnar. "And food for us has been a huge issue. He can't even stand the smells of some foods. We even buy clothing and let it sit a month or two in the closet before he will try it on."
But, like Anthony, Kyle has found some wonderful words to relate some of those sensations to his parents.
"One of the things that has been immensely helpful for Kyle is cranial-sacral therapy with his chiropractor," said Bodnar. "And once when we asked what the adjustments felt like he said, 'Like frogs jumping.' "

Behavioural
While most people who don't deal daily with autism instantly think of Dustin Hoffman's portrayal in the 1988 film Rain Man, the reality is different for every individual. Autism is the most common developmental disability in children with one in 165 children being diagnosed, said Barrett-Jardine.. 
The problem is, there is no way to make a physical diagnosis of autism. There's no brain scan or blood test that points to autism.
"We did have Kyle's brain scan once," said Bodnar. "We found that the right side of his brain was larger than the left, but the doctor pointed out that medicine didn't necessarily have a database of brain scans of 'normal' children, so who's to say that isn't normal?"
A diagnosis of autism is based on behavioural analysis and the range of behaviours that fit are enormous. Those diagnosed with Asperger's Syndrome - on the 'mild' end of the spectrum - are high-functioning, very articulate and intelligent, but they cannot understand most social cues and the importance of relationships. On the severe end of the spectrum people with autism can have a complete inability to speak and even exhibit self-harming behaviours. Difficulty with language is common with autism and Bodnar suspects some of the more extreme behavioural problems come from frustration.. 
"Think about it. They can't tell you if they're hungry or if their stomach hurts," she said.
Kyle Bodnar loves hugs and pressure and being cuddled. Anthony Barrett spent most of his life not able to bear being touched.
"I remember once, when he was about three or four years old, he reached out with his foot and touched the very corner of my little toe," recalled Barrett-Jardine. That was the first time her son touched her voluntarily. "It was the most dramatic and meaningful thing."

Coping
The first reaction for many parents when their child is diagnosed with autism is panic mixed with guilt. 
"It's 'why me? What did I do wrong?' " said Bodnar. "But that changes as you go on. It used to be that I'd go to meetings with therapists and there'd be the box of Kleenex out for me. It's still out, but now the tears are because of pride in his accomplishments."
Heading into junior high, Kyle has a supportive group of friends who are "just amazing," said Bodnar. "I'm actually going home tonight to prepare for his very first sleepover."
Her expectations for her son have changed.
"Six years ago I would have told you that Kyle would be living with us for the rest of his life. Now, I don't know," she said. "He's an absolute expert on hockey statistics and he's great on the computer. Maybe he could be a statistician for the Oilers. I would encourage him to go to university."
She credits an innovative preschool program at Vital Grandin School and her family's own perseverance in exposing Kyle to new things.
"That preschool program had six special needs kids and six normal kids in a fully integrated classroom, with a teacher, two aides, an occupational therapist and a speech pathologist. Where else are you going to get something like that?" she said. "I think we were just trying to live normal life. But I truly believe Kyle has had success because we went out into the community."
Anthony, approaching 18, has been mentioning the name of a girl in the next classroom, chuckled Barrett-Jardine. "I realized he had a crush. Now, I understand crushes and maybe what it feels like to not know what to do or maybe not have it responded to in the way you'd like," she said. "And he's learned to hug. I feel much more of a sense of connection with him."
One of the biggest barriers both boys face is the expectations of others.
"These children usually look normal," said Barrett-Jardine. "And people don't adjust their expectations."
Bodnar recalls a stranger in a grocery store complaining that she didn't "control your kid."
"I think we, as a society, really need to start becoming more accepting of all differences, all disabilities," she said. 
While both Bodnar and Barrett-Jardine are ready to fight every step of the way to make sure their sons have the very best opportunities available to them, neither of them is hot on the hunt for a cure.
"If autism were undone right now, what would that be like, really?" she asked. "I know Anthony as he is and as he is includes autism. And I love him as he is. If you're always trying to fix your kid at what point do you just love him?"
Bodnar agreed. 
"These children bring you a whole different set of joys. They certainly bring you patience," she laughed.
ibyles@stalbert.greatwest.ca


-------------------------------------------

Every year, when school starts, Stacy Bodnar writes a letter to her son's classmates to help them understand Kyle's point of view. These are some excerpts from the Sept. 2005 letter.
For those of you who don't know me, my name is Kyle Bodnar and I have Autism. I would like to tell you what that means for me and my family and what that may mean for you as we get to know each other ...
I've been working pretty hard the last eight years between my house and school to learn the skills I will need to be successful at school. This is where you have, and will, play a big part for me and you hardly have to do anything. I learn best from watching my school friends and doing the things that they do. So by you just being a kid I'm learning skills that don't come naturally to me. You see, when you have autism you don't understand how to interact with others and you don't know how fun it is to have friends because you like being by yourself ... Learning to play with other kids either alone or with a bunch of kids together is hard for me as it is for most kids with autism. Last year I learnt a lot and discovered that having friends is really cool! I love being invited to people's houses and I love having people over to my house as well. 
I find some things fascinating that you probably haven't taken the time to notice, like how cool it looks for sand to run through your fingers, and as it falls how it slides down the sides of the pile; or how cool it is to watch the credits at the end of the movie roll off the screen - where do you think all those words go? ... 
These things all make me feel good inside ... so good sometimes that I do them over and over again and get really excited and talk about things over and over again in a loud and excited voice. I hope I don't hurt your ears. I don't mean to. It's just my way of showing how happy and excited I am. If I am getting too carried away, it helps if you stand next to me and talk straight to me ...
Another important thing for you to know is that unless I'm looking right at you, I probably won't pay very much attention to you. Don't get frustrated with me - just get my attention by getting at my level and getting right in my face before you talk to me ... Sometimes, just touching my arm and saying, "Kyle, look at me!" is all it takes ...
One other thing about me is that I LOVE hugs and squishes, and cuddling. It makes me feel calm inside and helps me to settle down so I can attend to tasks.