By Ileiren Byles
Staff Writer
In the ABCs of dealing with autism, the 'c' can stand for many things - compassion, caring, cure - but increasingly, it stands for 'cost.'
For the most diagnosed developmental disability in children, the costs are astronomical.
"Think about it. You're talking about someone's entire life," said Deborah Barrett-Jardine, president of the Autism Society Edmonton Area. "No one knows what causes this, no one knows how to treat it. There are many, many treatments available, but no one knows how any given treatment is going to work with any given child."
Barrett-Jardine is also a mom to Anthony who, at 18, is facing some severe reductions in funding available to him. 
"The younger your child is the more services there are available to him," she sighed. "There are lots in preschool, drop off considerably in junior high and drop off even more in high school. Anthony's just entering adulthood and benefits for persons with developmental disabilities are being cut back dramatically."
Stacy Bodnar and her son Kyle have been able to take advantage of some unique programs right here in St. Albert. In preschool, Kyle attended a special program that integrated children with special needs into the classroom and offered specialized services such as speech pathology, occupational therapy and classroom aides.
"We also investigated an IBI - intensive behavioural intervention program - where someone comes in to the home and works with your child one-on-one for 40 hours a week," said Bodnar. "But a full program can cost $70,000 a year and Alberta is one of the very few places where the government funds it."
Other provincial jurisdictions, British Columbia for example, have refused and taken the matter all the way to the Supreme Court of Canada, which backed that refusal.
Barrette Jardine said she understands that fight.
"We've got one in 165 children being diagnosed with autism. Governments are looking at that number when they're looking at kids who have these very expensive programs," she said. "And then they have to look at what are they going to do with all of these adults who have autism? It's got to be pretty frightening."
Barrett-Jardine looks at the future with a certain amount of trepidation.
"I don't even have a clue what's available if you're a 40-year-old person with autism," she said. "And, as a parent, I have to ask myself, who will advocate for my child when I'm gone? AISH offers a very low standard of living. I don't want my child doomed to poverty."
Parents of children with Asperger's Syndrome, a very high-functioning form of autism that comes with severe social difficulties, face even more challenges, said Barrett-Jardine. 
"The government wants to limit funding to individuals with below-average intelligence. Well, people with Asperger's have normal or high intelligence, so I guess they're just not mentally disabled enough to be helped. They're still, for the most part, incapable of supporting themselves but bright enough to be frustrated with it."
Even kids with more severe forms of autism can show remarkable intellect.
"I know my son's mind is capable of some remarkable things, but I don't think he would ever think, 'Hey, I should be out there supporting myself,' " she said.
Other costs involved with caring for someone with autism include things like security systems to contain children who are prone to wandering, ("They sure learn how to open locks quickly") and respite care ("If your child's case is severe, you may never get to leave the house.")
There are also many programs out there that promise miracle results, for a price. One conference that recently came through Edmonton offered parents a "win-win solution" for $2,150 US for a four-day seminar.
"I must have heard of a suggestion a week, all of which cost thousands of dollars," sighed Barrett-Jardine. "Parts of me resent those people who use it to make a buck. I think what it really does is play on the guilt and the love that parents feel.
"For me, I was a poor, single parent and none of those options were really available to me. But what if mom and dad are both working flat-out, trying to get by, but they're still more than willing to shell out $2,500 for a little bit of hope, and then there's minimal improvement for a little while and then nothing?"
ibyles@stalbert.greatwest.ca