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.”
Help on the Web
To most parents of children with autism, online support has also become critical. There are online chats and hundreds of message boards devoted to family exchanges. Bryant found her doctor by going online to a regular Tuesday night chat group of parents (several of whom are also health care professionals).
Many message boards and chats offer support and encouragement but the practical advice is just as useful, according to Bryant. “You can get tips on how to handle certain behaviors or ask other parents if their children had weird reactions to certain medications.” You can even talk with others about the impact autism is having on your marriage or other children.
The Internet has also become a place for families of kids with autism to organize and flex their muscle, which is another type of coping strategy, points out Laura Bono, who has a 15-year-old son with autism and is a spokesperson for the National Autism Association.
“Some of my friends feel better if they can go to a support group and cry and talk about how hard it is. We feel better if we can fight to make a change,” says Bono. NAA families stay in touch via the computer and convene occasionally for conferences and political rallies.
Indeed, parent-based groups are responsible for successfully lobbying the government for an additional $50 million in funding for autism research and treatment, according to Dr. Sarah Spence, director of UCLA’s Center for Autism Research and Treatment. Her facility is one that has benefited from family activism.
“You hear a lot about families that fall apart because of something like autism,” says Spence. “But [in my work] I have to say I’ve been in awe of the families who figure out ways to cope and seem to come together. They all help each other get through this. It’s pretty incredible. It’s an honor to be in their presence.”
Bryant says it’s true: “Believe it or not, this experience can bring you closer.”
Victoria Clayton is a freelance writer based in California and co-author of the new book "Fearless Pregnancy: Wisdom and Reassurance from a Doctor, a Midwife and a Mom," published by Fair Winds Press.