Intensive program in Montana aids social skills of kids with autism

From The Missoulian in Montana:

POLSON, Mont. — Like a pint-sized presidential candidate, Dominic DiGiallonardo (pictured) struts his 5-year-old self through the halls of Polson Middle School.

As he roams the corridors encountering staff and students, he confidently greets people by name and stops to shake their hand.

Custodians turn off vacuum cleaners to welcome the youngster, and in return they receive a compliment from the little guy.

"Hi Mike," Dominic says to one member of the cleaning crew. "Good work."

So charming is the blue-eyed boy, a passel of seventh-grade girls stop their lip-gloss applications and locker decorating to smother him with attention.

This is not a rare occurrence, insists the little star's older brother. "The girls really love him," says 12-year-old Danny DiGiallonardo.

As he moves on to greet more people, Dominic's jaunty gait — sometimes on tiptoes, sometimes a wee bounce —shares a remarkable likeness to Winnie the Pooh's friend, Tigger.

There's so much joyful exuberance in this little person, the kindergartner's presence brings smiles to all who encounter him.

Watching as his brother cheerfully chats with the girls, Danny smiles, too.

With a maturity beyond his years, he says quietly, "Dominic used to be a huge challenge. Now I don't even think of him as a kid with autism, as a special ed kid because he's improved so much."

Welling up with emotion, Lisa DiGiallonardo explains that a new program offered by the Montana Department of Public Health and Human Services is doing more than improving the life of her middle son.

"The Children's Autism Waiver is saving my family," Lisa says. "Before we had access to this program, my husband and I were held captive in our home by Dominic's autism for three and a half years."

Extreme anxiety hardly describes the kind of terror-filled behavior that Dominic used to exhibit, Lisa says. His sensory processing and nonverbal disorders made going out in public nearly impossible.

The ordinary sights and sounds of daily life, like shopping for groceries or watching a basketball game in a school gymnasium, were so overwhelming the boy would unravel into a screaming riot, throwing himself to the floor and banging his head on anything he could find.

"It was horrible," Lisa recalls. "If someone rang our doorbell or approached us when we walked outside, or if someone said 'hi' to him, he would just melt down. And when I say melt down, I mean ear-splitting screams, lashing out and crying and it would take 20 minutes or more to console him."

As Lisa and her husband, Bob, waited for medical professionals to come up with a diagnosis, the family struggled with the inevitable stares they got when and if they tried to venture out of their home.

"Here's Dominic with bruises and cuts all over his forehead — bruises and cuts that never went away because he was constantly head banging. I know we were being judged," Lisa says. "And I know there were times when people thought Dominic was just being a brat, but we knew better.

"We just didn't know what was the matter."

Relief and heartache came when Dominic was 3 years old; Lisa and Bob were told what they had long known in their hearts.

Dominic's poor communication and social skills, his relentless self-injury and his obsessive desire to line up objects fulfilled many of the criteria under the broad diagnosis known as autism spectrum disorder.

"It felt good to finally know what Dominic had, but the outcome for the disease was really scary," Lisa says. "There's a lot science doesn't know about autism, but from all the research we did, we were told that either Dominic wouldn't ever live a normal life, or he might improve if we could give him one-on-one attention for eight hours a day every day of the week.

"And that was the hardest part. Here's something that's been proven to help your child get better, but you can't do it," she says. "Imagine doing this while caring for an infant and a husband and older child."

Bob, a seventh-grade English teacher and basketball coach, remembers that awful time not so long ago.

"I'd be home to help after school and on weekends," he recalls. "And it was really tough. We were just in survival mode trying to make it through the day.

Life changed exponentially for the better when the family's phone rang seven months ago and they were told Dominic was accepted into the Children's Autism Waiver, a new program that serves 50 children and provides 20 to 25 hours of intensive in-home training and rehabilitation services.

When the DiGiallonardos applied to be in the program nearly six months earlier, they felt like it would be a longshot, that it would take a miracle to get in.

Only 50 children would be accepted, and those children would be picked by lottery.

Launched in 2009, the $2 million program is funded by a combination of state and federal funds to provide service to the youngest victims of autism, children between the ages of 15 months and five years.

"Nobody really knows what causes autism — there is some general agreement that it is genetically based — but that hasn't really been determined," says Jeff Sturm, development disability program director for DPHHS. "But we are seeing some positive signs with early intervention programs, and the model we put together for this program is based on that."

The same research has also produced other hopeful outcomes.

"The cost of lifetime services for a person with autism is estimated to be $3.2 million, and these early intervention programs can reduce that cost by nearly two-thirds," Sturm says.

Montana's health officials are committed to expanding the pilot program, which provides three years of professional and expert intensive training and support for families and children with autism.

The ultimate goal is to improve the life of children in the program, and to make parents professionals in the treatment of their children while helping them gain the expertise to continue and sustain the child's gains.

"There is some real hope here to improve the quality of life for these children and their families," says Bob Runkel, Developmental Services Administrator for DPHHS. "And there certainly is a real need for this kind of assistance."

Autism numbers are on the rise in this country, says Ann Garfinkle, a University of Montana special education professor and national expert on autism.

Twenty years ago, one in 10,000 children were diagnosed with autism; today, one in every 110 children has the disorder.

"Seventy-five percent of the increase is accounted for by the reclassification of the disorder — and while the definition of autism has gotten better, the criteria for autism spectrum disorders has gotten bigger," says Garfinkle, who is the point person for the state program and provides the training and technical assistance for the care providers who work with families.

Today, the disorder has five different disabilities under its umbrella, but generally they lead back to similar symptoms: poor social skills, impaired communication abilities and repetitive behaviors.

Although the Children's Autism Waiver has not yet graduated the first class of its 50 students, initial feedback is astoundingly hopeful.

The data, Garfinkle says, underscore another optimistic projection. It's quite possible that at least 20 percent of the children who have participated in the Children's Autism Waiver will be able to attend general education classes without support.

Her hope is that the program continues to expand. Each family receives about $150,000 in expert services for the three years they are enrolled in the program. While the cost seems high to some, Garfinkle knows it would cost families more than $100,000 per year in the private sector, and would therefore be inaccessible to most.

Dominic, his father boasts, now loves to go to the grocery store. He loves taking the school bus.

The progress hasn't come without hard work, Lisa acknowledges.

Danny is proud of his brother, but he worries.

"I hate the fact that kids talk about the special ed kids differently, and Dominic is going to have to deal with that on some level," he explains.

"But he's changed a lot, especially when you look at the video that was taken when he was diagnosed when he was 3. People talk about hope for Dominic. I don't need hope. He's already improved and he'll continue to improve — I guarantee it."