Coping with autism

Victoria Clayton • E-mail

When Lisa and Alan Bryant of Dothan, Ala., had their son Jarrett, he was such an easy-going, low-maintenance baby that by the time he was 2 years old, Lisa had given birth to another son, Jacob. Then the family’s world changed drastically. Jarrett, now 7, had been diagnosed with autism.

“We knew nothing about autism except what we’d seen in the movie ‘Rain Man’ and of course it’s nothing like that,” Lisa Bryant says. As a toddler, Jarrett became unresponsive. He didn’t babble or talk, he didn’t hug or cuddle, he didn’t play with his toys or other children and he didn’t respond to pain. “One day he got out into the backyard and we found him standing in the middle of a bed of ants," says Bryant. "He wasn’t making a sound. It was as if he was totally detached.”

To make matters worse, their younger son was also diagnosed with autism at age 2. “That was just devastating," she says. "Hearing it a second time around was even worse.”

And Jake’s behaviors were even more dangerous. He’d climb on top of furniture and rip wallpaper off the walls.

“With Jake we also got no sleep," she says. "If we could get him to bed, it might be 1 a.m. Or if he went to bed he might get up at 2 a.m. and stay up the rest of the night running around the house.”

With two boys requiring so much care and therapy, Bryant says she and her husband would feel isolated and desperate if not for other parents of children with autism. “Sometimes you feel so alone in this and the only thing that helps is to talk to someone who has been there,” Bryant says.

As the number of cases of autism grows, many parents across the nation are grappling with the stress of the diagnosis and turning to other couples for support. Besides the anxiety and the high demands on parents' time and energy, autism can also take a heavy toll on family finances and put a big strain on relationships.

Reaching out to other parents can literally be a matter of life and death, according to Katherine Robertson, the mother of a daughter with autism and founder of the Northern New York Clinic, an autism treatment center in Watertown, N.Y.

“When people don’t feel like there’s anyone out there like them or anyone to help them they become desperate,” says Robertson. She notes at least two examples of parents who committed murder and suicide because they couldn't deal with the disorder.

'Don't bring that child'
Robertson and others in the field encourage families to seek out one another. Many families can’t count on their relatives, Robertson says. In some cases they even shun them because they don’t understand autism.

“Some [extended] families will say, ‘You come, but don’t bring that child.’ Or they make it known that the child isn’t welcome," she says. "It makes it all that much harder on the parents. So I tell people to look for a group. Call their public-health department or ask teachers, speech therapists and pediatricians.”

Some autism information Web sites also link to state-by-state directories of services and groups.

Parents who have come up empty in their local communities have also started their own groups. In Bryant’s town, she helped kick-start the Autism Support and Encouragement Group, sponsored by Southeast Alabama Medical Center. “We put ‘encouragement’ in there because you desperately need encouragement when you’re facing this,” says Bryant. Other parents have started local support groups — some for just parents of children with autism and some for parents of a variety of special-needs children.

Michelle Pappadia of Ellicott City, Md., has three children affected by autism. She started a gluten-free, casein-free diet support group by advertising in her elementary school newsletter. The diet is something she believes has helped her children enormously. In the diet support group, which now boasts 120 chapters nationwide, members swap recipes and tips. But Pappadia says all pertinent support groups are worth investigating.

“I tell everyone to either join a support group or start one,” says Pappadia. “I’ve joined almost all of the support groups I’ve heard of. Some have moms’ nights out and include all moms of children with disabilities. The best thing is that you don’t feel like you’re the only one going through this. You leave feeling really good. But you can also find suitable babysitters and lots of other resources through these groups.”

MORE FROM AUTISM: THE HIDDEN EPIDEMIC?

Autism: The hidden epidemic? Section Front

More U.S. families in the grip of autism As autism cases soar, a search for clues Inside the autism treatment maze How families connect to cope with autism Virtual world teaches real-world skills Read responses from our readers Vote: What's behind the rise in autism? Autism resources, treatment and support Autism: The hidden epidemic? Section Front   Add Autism: The hidden epidemic? headlines to your news reader: