Growing up with autism

During a recent first-grade class session at the McDonogh School in Baltimore, 7-year-old Aidan Wade gave an impromptu discussion on what it's like to have a sibling with autism.

"My brother Conor is 11, but his brain thinks he's 5," said the Baltimore boy. "He acts kind of different, but that's OK."

Aidan's words reflect a broad spectrum of attitudes that one might find in siblings of children with autism, a complex set of developmental brain disorders. How a sibling reacts is often dependent upon the severity of the autism, where the child with autism falls in the birth order and how parents model behavior they expect from each of their children.

Siblings of children with autism can face difficulties forming healthy sibling bonds, some studies suggest. Researchers from the University of Washington found in 2007, for example, that some young siblings they studied used fewer words and social smiles than those without autism in the family. The study found that parents reported some "social impairments" in siblings as young as 13 months.

Siblings can face the prospect of tantrums and unexpected behavior from brothers and sisters with autism. They might have to compete for attention. But they can also learn empathy early, experts say.

"We know that there are special demands growing up in a home with a child with autism," said Cathy Groschan, a social worker in Kennedy Krieger Center for Autism and Related Disorders. "But if children view their parents and their peers as responding positively to their sibling's disability, and if they have good factual understanding of the disability, they tend to have positive relationships and a positive outcome."

Peter Bell, vice president of Autism Speaks, a New York-based autism science and advocacy organization, says one thing siblings of children with autism learn is tolerance. "Many of these siblings grow up knowing that a brother or sister might be a little bit different than others," Bell said.

The Pennington, N.J., resident has a 17-year-old son, Tyler, with autism, and two younger children, Derek, 15, and Avery, 11.

"They see it as a part of everyday life and OK to be different and unique," Bell said, "and that sometimes there will be good and bad days, but at the end of the day, you are who you are and what you stand for."

Autism Speaks says that an estimated one in every 110 children is diagnosed with autism, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined. And Bell said that many services for children with autism are not covered by insurance, creating significant financial strains on families.

That, he says, sometimes affects what a family has to spend in general, let alone on each child. But he added that siblings of children with autism generally adapt well to the challenges, and because of it foster a keen sense of selflessness and caring.

Some grow up to devote themselves to careers in autism awareness and research.

Conor Wade was diagnosed with autism about two weeks after younger brother Aidan was born, said their mother, Alisa Rock of Baltimore. "Aidan has not known anything different," she said.

"The first couple of years were more stressful for us. My older son did have challenging behaviors, and Aidan didn't understand why Conor would have tantrums, bit his hand or hit [Aidan]," said Rock. "Conor had tantrums from age 5 to 8 at varying levels of intensity, but he could have them for hours."

When Conor turned 8, that behavior subsided significantly, and the two of them became very good friends, Rock said. "Aidan took on the caregiving role, and I was able to say to him, ‘Keep an eye on your brother,' or ‘Help me here.' "

Rock said that Conor's tantrums have recently returned.

She added, "Aidan doesn't understand. He doesn't remember those challenging behaviors, and he's feeling very stressed with the re-emergence of those behaviors. But still, he's a happy-go-lucky kind of kid with a positive attitude."

Marlo Lemon of Randallstown calls her 5-year-old twin boys Matthew and Joshua a "double blessing." To hear her tell it, the boys have been a blessing to one another as well.

Matthew has autism. Joshua, born a minute earlier, does not.

"Joshua is such a good big brother, and though he's older by just a minute, he takes his responsibility very seriously," said Lemon, who also has a daughter, Victoria, 4. "No matter what Joshua's doing, he wants Matthew to be included. If we're in a public place, and Matthew wants to run off, Joshua will say, ‘Mommy, I'll go get him.' "

Lemon said that for a time, Matthew would run away from Victoria, but she and Joshua eventually got him engaged in their activities. And, in making sure that he fits in with all they do, they show him that he, too, must put his plate in the sink after meals.

Sometimes, however, the two wonder: Is Matthew going to talk someday? Why is Matthew allowed to jump on a chair and eat chicken nuggets while they cannot?

There are times, Lemon says, when she and her husband, Frissell, must devote 90 percent of their attention to Matthew, "and I need them to be good, because you never know if Matthew is going to run off."

But Lemon said she and her husband get plenty of family support; both sets of their parents live within 20 minutes of their home. She added that she makes individual time for each of her other children as well.

For Lemon and Rock, their children without autism were either born after or close in age to the one who has the disorder.

Trish Stone of Towson had her first two children, David, 22, and Megan, 18, well before her son Matthew, 8, who has autism. She also has a younger daughter, Kendal, 6.

"When Matthew was born, they were both excited about having another sibling," said Stone of her elder children, "and then it became difficult. They weren't used to it, and like some other families, it caused a distance between them.

"Shortly after that, David learned how to drive, and when he could get out of the house he did. Megan was 11, and she began to take on the parental role. It was tough on each one of the siblings in different stages, but they ended up being more compassionate and caring than typical siblings."

Many youngsters with siblings who have autism get involved with programs and organizations that promote autism awareness and research. Some have been soliciting donations for Kennedy Krieger Institute's autism research and treatment programs, a task that used to be solely the work of adults.

But this year, a group of about 19 kids and young people, ranging in age from 6 to 20, began doing some of the fundraising. They call themselves Kids Who Roar. They also planned some of the activities at a Kennedy Krieger event to be held Sunday at Oregon Ridge State Park in Cockeysville.

There will be a bike ride called ROAR, short for Ride for Autism Research. Riders pay $5 to $30 to register and pedal anywhere from 5 to 50 miles. Hikers have a similar arrangement for jaunts through the park. This year, thanks to ideas offered by the kids committee, there will also be a dinosaur dig, where toddlers can burrow for hidden treasures, as well as a place to make your own beaded bracelet, and a jump rope station.

Those involved in the fundraising include Hunter Gillin, 15, of Owings Mills, whose 17-year-old brother Johnny has autism. Hunter says that he and Johnny are best friends, that they enjoy watching movies, wrestling or just hanging out. In fact, he says it wasn't until he was 11 that he even discovered Johnny had autism.

"Johnny and I have been best friends through the years, and it really didn't matter," said Hunter. "But I had a couple of friends come up to me, and they were just asking questions, nothing mean or anything, but they would ask, ‘Does your brother have autism?'

"I said, ‘No, I don't think so.' Then I went up to my parents and they sat me down and explained the whole thing to me."

Gillin's experience reflects how many children with a sibling who has autism seldom view the development disorder in a negative way, if at all.

"Our goal has always been to see our son first, and his autism second. We have focused on, and celebrated, what Johnny can do, instead of what he can't," said Pam Gillin, the boys' mother

"Because Johnny is the oldest, his other siblings accepted him at face value — they didn't know that he should be any different," she added. "They saw that he was a great reader, well before they could read, and was a master at puzzles. They genuinely saw him for his strengths."

That's why Pam Gillin, who works at Kennedy Krieger, said that there the motto is, "If you've met one child with autism, well then, you've met one child with autism."

"There are many perceptions of autism, affected children, and their families," Gillin added. "These perceptions may be reality in one family, but not in another — so it's important to put them aside altogether and take each child with autism as they come."

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