Challenges of Autism
12:00 am
Tue November 9, 2010

Autism and Parenting: Challenging, But Also Enriching

Parents across the board would probably agree that becoming a parent is a lesson in managing chaos and tolerance. And research shows that parents raising a child with autism experience higher stress levels than parents of children with other disabilities.

But some parents of children with autism say their child’s diagnosis has enriched their lives in ways
they never would have imagined.

As part of our series Challenges of Autism, NHPR Correspondent Sheryl Rich-Kern sat down
one evening with the parents of an 11 year-old boy
with autism.

Here’s their story.

Like every other parent, Don and Sue waited eagerly for their child’s milestones to appear. They waited for the walk that would turn into a run; the babble of words that would blend into sentences; the ear for stories that would encourage reading.

The Mousseaus have two boys. Donny is 13. Zachary is 11.

When Zachary was a toddler, Don and Sue began to notice he wasn’t reaching some of those milestones.

"The typical time you would think a child would start talking, babbling, Mom, Dad, things like that. By the eighteenth month, we knew there was something odd, something was off."

At ages two and three, Zachary didn’t seem to want to interact with other kids. He seemed to live in his own world. One group of doctors diagnosed his symptoms as full-blown autism. Another said he had something called pervasive developmental disorder-not otherwise specified.

That diagnosis is given so often, doctors call it PDD-NOS. It’s another form of an autism spectrum disorder.

A few years later, a third doctor told the Mousseaus that Zachary also had severe apraxia, which means he can’t make vocal sounds.

"All the wiring that happens that makes us talk wasn’t happening with him, wasn’t coming naturally. He didn’t speak his first clear words until he was seven years old."

Zachary’s mom, Sue Mousseau:

"At first we were shocked, devastated. At that point, you try to – hey Zach, shhh. We did all the research we could about autism. We tried to say OK, what could we do to make this kid’s life better, and our life, because it was very difficult. One of the biggest things he had was OCD behavior, which I think that’s the more difficult (Zach making noise) – I’m talking to Sheryl, OK? I’ll see you in a minute, OK? The OCD is really, really tough to deal with, even now, and it was back then, too."

Many children with autism need to follow schedules. And they seem to like repetition.

Zachary has the good looks of a lanky adolescent. Yet he has the quirky enthusiasm of a three year old.

Each night before bed, Zachary plays with his Thomas the Tank Engine train set and watches a Barney video. The same episode every night.

"And then he may get sick of this and get another video and watch that every night for three, four weeks. And then he wants me to sing all the songs." (Sue begins to sing.)

Zachary’s OCD — or obsessive compulsive disorder — means he doesn’t like to deviate from routine. Car rides are a challenge because Zachary likes to go the same way every time.

And if the Mousseaus vary their route to a destination? Zachary gets upset.

"We were going to Boston. Got on the highway and he didn’t like the way I went and he was just screaming and yelling. He freaked out so bad. Donny got so frustrated he screamed at him and broke down and started crying. Susan and I realized we’re not going to make it to Boston. We were 20 minutes out and we turned around and came home."

"When Zachary is 18, he’s going to be a bruiser. We have no idea what he’s going to be like at 18. I had no idea what was going to be like at 11. I had no idea how far he could come. There’s hope that between now and the time he’s a young man, that things can continue to change for the better, for him, and for us, so that we can have a little more of a normal life in some ways."

That hope springs from the fact that Zachary has surpassed certain expectations. Now he does want to play with other kids.He does notice the world around him more.He can read. And write.

"He’s still socially inept. He doesn’t have the social behavior as a typical child would have. He’s behind too. Like screaming at a kid. Like, screaming, noooo."

As any married couple will attest, having children changes your relationship. Then, add autism to the mix.

It’s put a lot of stress on marriages. The national divorce rate is almost 50 percent and in special needs families, it’s almost 80 percent. So if you have a marriage that’s not already strong, it can break it easily.

The Mousseaus are quick to admit they’ve had trying times.But they say they’ve also grown together from the experience.

"I can remember in high school people that were just different from us because they weren’t outgoing socially. It changes your perspective on all people. It makes you a little more tolerable."

Don and Sue Mousseau have developed close ties with other families of special needs children. Their involvement with that community, they say, has led them to get active in causes like the Special Olympics.

"We’ve introduced him to a community that doesn’t care what other people think and doesn’t care about anything other than competing and having fun and showing that they can do things."

Zachary’s parents assess his progress one year at a time. They’re excited by any progress, they see it as a gift, but they’re reluctant to set long-term goals.

The Mousseaus believe the therapies he received early on made a difference.

And they hope other treatments will, too.