By now nearly everybody knows a family that’s been touched by autism. After all, the condition affects one in 50 school-aged children, a recent government survey found. Yet despite the vast numbers, many parents of autistic kids feel isolated and misunderstood, says Lisa Goring, vice president of family services for Autism Speaks, an advocacy organization. To help bridge the gap, we asked a group of moms to share the biggest misconceptions so we can all be better friends, better parents — and better people.
- Our kids feel life deeply.
People think autistic children don’t feel much, but the opposite is true. “Many kids with autism have so much emotion that they don’t know what to do with it,” says Jackie Siebel, a Port Huron, MI, mom of five; both her 7- and 9-year-olds have the condition. Here’s how Carol Meerschaert of Paoli, PA, explains it: “Imagine you’re wearing the itchiest sweater you ever wore and that the room you’re sitting in has annoying, buzzing lights, and stinks. How easy would it be for you to focus on school and make friends?” Both of Meerschaert’s children have Asperger’s syndrome, a type of autism that affects a kid’s ability to socialize. “It’s like a flood. It’s hard for them to process their own emotions, let alone everyone else’s.”
- Discipline won’t cure them.
Autistic kids aren’t simply misbehaving when they melt down in public. They’re struggling to control themselves in unfamiliar situations. Jackie Siebel’s 9-year-old, for instance, becomes overwhelmed in crowded places, often hitting himself or throwing things. “He pleads with me to make his brain stop,’’ she says. That’s not something you fix with a timeout. “If it was as simple as spanking, autism would be cured,” she says.
- Our kids long for friends.
One of the most frustrating misconceptions is that children with autism aren’t interested in sleepovers or playdates. On the contrary: “Ethan craves friendships,” says Heather Blint, a Minneapolis mom to a 7-year-old son with Asperger’s. Blint senses some classmates shun her son because he acts oddly sometimes, like when he can’t sit in his usual bus seat. But when kids understand what autism is, they tend to be more accepting. Shauna Hiatt, a Payson, UT, mom of three autistic kids, agrees. When a boy once said, “You’re weird,” to one of her sons, she told the boy it was autism that made him behave differently. “The boy said, ‘Oh, okay. Cool.’ Kids just want to find similarities and play,” Hiatt says.
- We want your questions!
It’s really easy to slip into judgy-parent mode when you see another kid doing something considered inappropriate. But autism is an invisible condition, says Siebel. “You can’t look at a child and know he has it.” Alicia Carter has heard the whispers about her boys, 4 and 5, who both have autism. But when a neighbor, who knew of the tantrums, asked with concern, “Is there medication for that?” Carter answered her eagerly. She explained that because most medication used to control behavior turns her sons into zombies, she avoids it. “It gives me the chance to spread information,” says Carter, who lives in Sevierville, TN. Shauna Hiatt also wants people to ask questions. “Everyone is afraid to say the wrong thing,” Hiatt says. “But there is no wrong thing as long as the underlying intent is not harmful.”
- We have plenty to celebrate, just like you.
The big achievements just might be a little different. For instance, most parents take for granted their children’s spontaneous hugs or the time spent playing together. But for parents of kids with autism, such affection or interaction is fleeting or absent. “That’s why when it does happen, it’s just amazing,” says Bonnie Zampino. So when her 9-year-old asked her to play a game with him after school, she was absolutely thrilled. “That is just huge. He never wanted to play with me before,” says Zampino, who’s from Harpers Ferry, WV. And sometimes, the big moments are just like everyone else’s: When her son won a starring role in the third-grade play, not only did her family attend, but so did her boss and co-workers!
If you know someone with autism or want to get a handle on this complex brain development disorder, check out our list of helpful books for kids and parents.