Getting past labeling kids

  • Article by: TIFFANY GEE LEWIS , Special to the Star Tribune
  • Updated: March 26, 2012 - 7:17 PM

Whether children have OCD, autism or other disorders, parents and experts caution against using it as their defining characteristic.

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To most people, Ethan Burgoyne is your everyday 10-year-old: often quiet, fiercely competitive, wild about sports.

But Ethan was found to have high-functioning autism at age 2. Ethan doesn't know his exact diagnosis. Neither do most of his friends, sports coaches and church teachers. And that's just fine with his mother.

"I don't want it to be the main part of his identity," said Tiffany Burgoyne of Edina. "I don't want him to think, 'I'm Ethan and I'm autistic.' It's just the way his brain works, and it's wonderful."

From ASD to OCD, there is an alphabet soup of disorder labels being attached to kids these days. And while an official diagnosis in early childhood often is necessary for children with special needs to get access to resources, parents worry that a label may define -- or, worse, limit -- their children.

"We never want it to be a defining characteristic of the kids, more than any other, like height, hair or skin color," said Scott R. McConnell, a professor of educational psychology at the University of Minnesota.

According to McConnell, any diagnosis should be looked at as just another tool in the box to help parents understand and help their children. It's important to remember, he said, that one child with Asperger's syndrome might behave vastly different from another.

Burgoyne is selective when it comes to telling people about Ethan's autism, but she's quick to open up when the need arises.

A few years ago, she saw her oldest son, Trevor, getting increasingly frustrated with Ethan because he couldn't catch on to concepts quickly. She explained to Trevor that Ethan had autism. That knowledge helped Trevor have more empathy for his brother's struggles, Burgoyne said.

That's an approach that can set children up for success, said Rebecca S. Banks, co-author of the book "Bright Not Broken: Gifted Kids, ADHD, and Autism."

Instead of using broad labels, which are widely misunderstood, Banks suggests that parents explain the specific behaviors or situational challenges a child may have. If a child struggles with verbal communication cues, a parent could let a teacher or coach know by saying, "My son is a much better communicator on paper."

Whether or not parents decide to divulge the diagnosis, it's essential that they talk about their children's issues when they present themselves, said Diane M. Kennedy, author of "The ADHD Autism Connection" and co-author with Banks of "Bright Not Broken."

Informing the child

When and how to tell children about their own diagnosis also can be a difficult decision for parents.

Banks believes that a child should be told at some point. As children get older, especially in the college years, knowing more about their disability can help them to be advocates for themselves.

For Sheila Brown of Woodbury, telling her son Trenton about his Asperger's syndrome proved to be a turning point in his development.

"When I sat him down and explained it to him, he thought a moment then said, 'It's like describing the desert to someone who just walked through it, but didn't know what it was called.'"

Still, parents fear that if children learn they have a disability, they'll limit themselves or use the label as an excuse.

"You need a child to understand that [they] think and learn differently, but be firm that it is never to be used as a crutch," Kennedy said. "The goal is to teach them to use their gifts so they can advocate for themselves."

That means being understanding while still setting realistic expectations for behavior and achievement.

Burgoyne has come to realize that the autism diagnosis helps explain her son's behavior, but doesn't excuse it.

"As his mother, I need to help him have the appropriate behavior," she said. "He's got to live in a non-autism world, and I've got to figure out a way to help him live in that world."

Set for success

For children with special needs to succeed, parents, teachers and others need to highlight their strengths.

"The disability is important because it hampers life," said Kennedy, "but as parents, we also know our children are unique. They're incredible people. So it's important not to bask in our weaknesses. Where you need to live is in your passions. That is where you will excel and go far."

Burgoyne, for example, praises Ethan in math, where he excels, but also encourages him in reading, where he struggles. She has frequent discussions with him about friendship and what's happening in the social scene at school.

In the formative years, it's essential to empower children at their own level, said Deedee Stevens-Neal, director of Fraser School, a local early childhood center that specializes in children with special needs. She acknowledges that this can take perseverance.

"Parents have to look in the long run and say, 'What do I want my child to be able to do?' Then encourage them to go farther and farther," she said.

She added that it's crucial not to deliberately put children in a situation they can't handle.

"If they have ADHD and have a hard time sitting still, don't take them to a two-hour movie," she said.

Brown initially encouraged Trenton to take an interest in sports, but both learned (after many failed attempts) that athletics wasn't his thing. Instead, he got involved in Boy Scouts, which allowed him the social interaction he needed without the competition.

Trenton is now an aerospace engineering major at Iowa State University and a member of a service fraternity. He uses disability resources for note-taking and test-taking, but he doesn't let his diagnosis define him.

"He's very accepting of himself," Brown said. "He's figured out how to be himself and not have angst over it."

Tiffany Gee Lewis is a St. Paul freelance writer.

  • RESOURCES FOR PARENTS AND CHILDREN

    • "What to Do When Your Brain Gets Stuck: A Kid's Guide to Overcoming OCD (What-to-Do Guides for Kids)" by Dawn Huebner and Bonnie Matthews.

    • "Asperger's: What Does It Mean to Me?" by Catherine Faherty.

    • "The Survival Guide for Kids With ADD or ADHD" by John F. Taylor.

    • "Learning Outside the Lines: Two Ivy League Students With Learning Disabilities and ADHD Give You the Tools for Academic Success and Educational Revolution," by Jonathan Mooney and David Cole.

    • "Bright Not Broken: Gifted Kids, ADHD, and Autism" by Diane M. Kennedy and Rebecca S. Banks, with Temple Grandin.

    • "Quirky Kids: Understanding and Helping Your Child Who Doesn't Fit In: When to Worry and When Not to Worry," by Dr. Perri Klass and Dr. Eileen Costello.

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