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Brothers and sisters learn to live with autism

01:00 AM EDT on Sunday, October 26, 2008

By DON AUCOIN

The Boston Globe

Children toss balls of paper containing their concerns at the Autism Resource Center in West Boylston, Mass. From left: Chrissy Berard, center director Sue Loring, Jen Morgan and Todd Hamelin.


The boston globe / Mark Wilson

WEST BOYLSTON, Mass. A snowball fight had erupted inside a conference room.

Sue Loring, the director of the Autism Resource Center in this central Massachusetts town, had handed out pieces of white paper and instructed a dozen youngsters to write down “a worry you have about when you grow up.”

Then she told them to crumple the paper into “snowballs” and cut loose.

Once the flurry subsided, Loring asked the youngsters, ages 9 to 15, to pick up a snowball and read it aloud.

“I worry about where my brother will live when he grows up.”

“When Joey gets older, he is going to need some help.”

“He will punch me like he does now, and he will be bigger, and it will hurt.”

“Robby will get teased at what he does because he’s autistic.”

These were siblings of children with autism, and it was because of these kinds of concerns that the Autism Resource Center launched these monthly “Sibshops” to help them cope. Blending information and education with recreational activities, the Sibshops are designed to make the siblings of autistic children feel less alone and less burdened by responsibilities no one their age should feel compelled to shoulder.

Autism is a developmental disorder that affects communication and social interaction skills, and is often characterized by intensely repetitive behavior. It ranges from high-functioning Asperger’s syndrome to severe learning disabilities and mental retardation. However it manifests itself, for siblings it often adds a layer of pressure to be the “superkid.” For these brothers and sisters, the Sibshops are a sounding board that allows them to vent their complicated feelings.

“It really does help me,” said Todd Hamelin, a 15-year-old high school freshman from Fitchburg. “I can be myself. They all know what I’m going through.”

Hamelin often nodded or exclaimed in agreement as the youngsters took turns reading the contents of each scribbled message. Both of his brothers are autistic, but on that morning he seemed most concerned about his younger brother, who has Asperger’s.

“I think he’s likely to be successful, but he’s addicted to video games,” Todd told his fellow Sibshop participants. “I’m worried about his financial issues.” He also expressed concern about the social environment his brother will encounter when he enters high school. “I’m worried that he’s going to be teased.”

Reassuring words came from Loring, who has a 23-year-old son with autism, and from her daughter, Blithen Davis.

First, on the issue of teasing, Davis told Todd: “As long as he has a handful of friends, it doesn’t matter.” Loring then promised that, if necessary, she could conduct an awareness-raising workshop in the high school when the time came.

As for the question of money management, the adults told Todd (and the other children, who were listening closely) that professionals will shoulder that task when the time comes.

Jayne Paszko, who formerly worked at the center and who has a 36-year-old brother with autism, sought to calm the fears of the girl who, thinking of her own autistic brother, had written: “I worry that he won’t be happy.”

Paszko promised her that he would be, “as long as [he] has a purpose and is in a comfortable situation: having a job, something to do, just the basics in life, the things that we all want.” Loring added pointedly: “And having a sister who cares probably helps.”

A little help can make a big difference. The Autism Resource Center is a program run by the HMEA, a nonprofit human-services agency for individuals with developmental disabilities based in Franklin. The services the center provides to autistic children and their families include weeklong “Family Fun Days” in the summer that feature swimming, singalongs, fishing, canoeing, cookouts, crafts and games. Four years ago, the center launched the Sibshops.

On a recent Saturday, the adults included Loring, Davis, Paszko and Cindy Olmsted, the director of family support at HMEA, who has a 40-year-old brother with autism.

They assured the youngsters that service providers will be there to help their autistic brothers or sisters with housing, employment and health-care needs when they are adults. They emphasized that employers and the general public are more understanding about autism than they once were. They stressed that a job and a handful of friends could make all the difference.

The overall message: Though their autistic brothers and sisters will always need their love and support, the full responsibility for their care will not fall on the siblings.

“When I was younger and thought about having to take care of my brother, it was overwhelming,” Davis said. “But when you’re an adult, it’s not going to be a big, big deal.”

Some youngsters looked relieved; others appeared unconvinced. One boy voiced qualms about his autistic brother’s future. “When I tell him to turn out the light, he tells me not to boss him. I worry that when he gets a job, he won’t …” His voice trailed off. Loring finished his unspoken thought: “You’re worried he doesn’t have the social skills to hold a job.” The boy nodded.

That was Olmsted’s cue to begin talking about her autistic brother, Johnny, who works for the Marriott hotel chain. She acknowledged it has been a challenge for him at times, saying he was once suspended for three days for cursing at his boss. But she noted that he has a job coach who helps him, and that he generally fares well because “there are people around him that understand him and support him.”

Todd Hamelin’s 17-year-old brother, Kevin, has autism with mild mental retardation, and his 13-year-old brother, Ryan, has Asperger’s syndrome. He spoke of them with affection and pride. But his parents have yet to meet most of Todd’s friends, and Todd acknowledged the reason: He is reluctant to invite anyone to his home because of his brothers. Moreover, he is often anxious when the family is out in public. “They act pretty normal till they have a fit,” he said. “And then a crowd gathers. But we just keep going.”

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