The phone rang one recent afternoon inside the Bangor home of state Sen. Joseph Perry, interrupting a casual discussion of tax reform, the benefits of tenure in Augusta and why his city needs a new auditorium.
Perry waited several rings but couldn’t resist checking the caller ID. The life of a legislator, he said: Someone always wants something.
“Do you mind if I take this?” Perry asked politely.
Once he got permission, he walked into the next room and engaged in a brief conversation. A fellow lawmaker wanted to see if the senator could participate in a coming panel. “Well, I can’t do anything until I get the kids to school,” Perry said.
It was a simple statement, one any parent might make, but a glimpse inside the Perry household reveals anything but simplicity.
Perry and his wife, Jane, have two sons, 12-year-old Joseph Jr., and 8-year-old Kyle, who has autism. Their home is one of hundreds throughout Maine affected by autism.
For those who don’t understand the brain disorder — which is typified by limited social interaction and communication, and often accompanied by behavioral issues — diagnoses are like snowflakes: No two are alike.
Kyle is nonverbal. His communication comes from gestures, body language and a basic system of icons he uses to convey basic needs. He frequently needs sensory stimulation and requires almost-constant supervision.
Perry and his wife readily admit that Kyle can be a handful, but he’s a lovable, smiling, unique handful.
“He’s just living his life,” Perry said, watching Kyle bounce around the living room. “And, honestly, he’s really come a long way.”
In his 13th year of service in the State House, Perry has become more vocal and active in advocating increased awareness and screening for autism. At a time when politicians are vilified for giving in to their own special interests, Perry doesn’t mind carrying the torch for a cause he knows intimately.
His most recent initiative, LD 343, seeks to create an autism awareness license plate, with the proceeds going to education and early intervention efforts. Perry needs to pre-sell at least 2,000 plates to move the measure forward and recently created a Web site, www.autismplate.org, where people can learn more.
“I get questioned all the time on bills I introduce, but I don’t think anyone will really get too worked up about this,” he said. “Who’s better to advocate than someone who can speak to an issue from experience? It’s a citizen Legislature and each member has different expertise. This is part of mine, I guess.”
A puzzling disorder
Across the country, April has been designated as Autism Awareness Month. In 2007 the United Nations General Assembly adopted a resolution declaring April 2 as World Autism Awareness Day.
As diagnoses of the disorder increase every year, most agree that awareness is crucial.
“The biggest thing for people to understand is that autism is a spectrum,” said Cathy Dionne, executive director of the Autism Society of Maine and the parent of a 15-year-old autistic son. “It’s wide and it’s big.”
Autism spectrum disorders include autistic disorder, nonspecific pervasive developmental disorder and milder diagnoses, such as Asperger’s syndrome. According to the last count from the Maine Department of Education, 2,200 students enrolled in special education were diagnosed on the autism spectrum. Maine’s overall autism rate is 1 in 87, nearly twice the national rate of 1 in 150.
“Nobody really knows why Maine is higher,” Dionne said. “Everyone seems to agree that there is a genetic component but there appears to be an environmental factor as well.”
The rate of autism worldwide has increased dramatically in the last two decades. The rise can at least partially be attributed to changes in criteria provided by the Diagnostic and Statistical Manual, according to Dionne. Essentially, those changes created a broader category for autism spectrum disorders, which has led to more diagnoses.
The growing rate is still alarming, especially because there is no defined cause or cure for autism.
Few parents pay attention until it affects them personally. That’s the way it was for the Perrys.
“He was a perfect baby,” Perry said of Kyle. “There was really no sign that anything was wrong.”
By the time he celebrated his first birthday, though, Kyle hadn’t started talking, “But he wasn’t listening either,” his dad said. “We thought maybe he was deaf.”
When Kyle went to the doctor for a checkup at age 2, the tests began for something else.
“At the time, I didn’t really even know what autism was,” Perry said. “And what I thought I knew wasn’t really all that accurate.”
Indeed, autism is a puzzling disorder for many. The awareness ribbon for autism is even made of puzzle pieces.
The Perrys have come to accept their son’s diagnosis but it wasn’t always easy.
“There’s a lot of self-blaming,” Perry said. “As a parent you think, ‘There must be something I did or didn’t do.’ Eventually, you get beyond that.”
The biggest concern when Kyle was diagnosed was that he might somehow change.
“I was terrified,” Jane Perry said. “He was this good-natured, positive, smiling kid. I was afraid we would lose that.”
So far, they haven’t.
A normal life?
One recent evening, the Perry family planned a dinner at the Olive Garden restaurant. Joseph Jr. had made the honor roll at school, a cause for celebration.
But while most parents might consider a night out no big deal, it’s monumentally trickier for parents of autistic children.
“There’s a lot of pre-planning and then about a half-dozen backup plans,” Perry explained.
While the Perrys were dining, Kyle was restless and often made loud noises, another common behavior of autistic children.
“I think there were a lot of people who were thinking ‘Why can’t you control your son?’” said Perry. “They just don’t know.”
Most who are diagnosed with autism also have unique and sometimes compulsive behaviors. Kyle, for instance, has to have certain toys handy. And, his parents always keep gum around, although they watch the pack closely because, “He’d eat the whole pack if we let him,” Jane Perry said.
His favorite drink is chocolate milk, but he insists on drinking it through a straw from a small paper carton. Sometimes, his parents cheat and fill the carton from a gallon jug.
But, there are more serious drawbacks associated with Kyle’s disorder.
He ruined his dad’s laptop recently with what his older brother referred to, almost gleefully, as a “tap dance.” He accidentally drank from a bottle of fingernail polish a while back. Now every cabinet in the house is locked. And, he has wandered off before, once inside a hotel in Quebec City, once in the woods near his grandparents’ house in Holden.
Perry said even his in-laws, who interact with Kyle regularly, don’t fully grasp the particulars of autism. “I’m not sure I do,” the senator said.
That’s where agencies such as the Autism Society of Maine come in.
“We educate a lot of people on how they can advocate for themselves,” Dionne said. “And we can offer hope. We can assure people that it does get easier.”
She said Perry has been a tremendous resource during his tenure at the State House.
“It’s nice to know you can go to him and he understands what’s at stake,” Dionne said, adding that the senator’s conflict of interest in this case is a blessing. “That’s how I ended up [at Autism Society of Maine]. For me, it’s nice to be on the phone with a parent and be able to say ‘I do understand.’”
That’s one of the reasons Perry introduced his autism license plate bill. It’s a small way to help more people understand.
As for Kyle, Perry and his wife know full well that he’ll likely never be able to live on his own. They have made their peace with the inevitability of having to take care of him into adulthood. Now they relish any progress Kyle makes, however slow the process may seem.
“We just want him to have as normal and productive a life as possible,” Perry said. “That’s all any parent wants.”
What to do to boost autism awareness
Autism Society of Maine and other organizations throughout the state and country are recognizing Thursday as World Autism Awareness Day and April as National Autism Awareness Month.
Society officials said there are many ways to spread the word about the growing need for concern and awareness about autism, and April provides a special opportunity to educate the public. Here are just a few things you can do:
— Wear an autism puzzle ribbon, lapel pin or other awareness identifiers Thursday and throughout the month of April.
— Call Autism Society of Maine at 800-273-5200 to request a free autism awareness packet, which includes colored posters, ribbons, stickers and information about autism to post at your local library and other public places.
— Come to Autism Society of Maine’s open house from 10 a.m. to 2 p.m. Thursday, April 16, at its office at 72B Main St., Winthrop.
— Seek sponsorships during April for the society’s Walk for Autism, which will occur May 3. Proceeds from this event will fund the group’s seventh annual summer camp for children with autism spectrum disorder and other programs.
— Dust off your bikes and get ready for the society’s Ride for Autism, which will be held July 18 in Kennebunkport.
More information is online at http://www.asmonline.org.