The emotions of new parents can run the gamut. They’re in uncharted water. Even people who have spent a great deal of time around children will likely tell you that having their own is a new experience. For Eric and Cindy Everson, it was no different. They had been around children, but when they had their son, Shane, the world changed. “We were new parents,” Eric says, “we didn’t know what to expect.”
Still, they did recognize when Shane started missing milestones. He was late to crawl. Then he was late walking and they had him evaluated. When Shane started walking shortly after the evaluation, Eric and Cindy hoped all was well. But they were seeing other issues as well. Shane was not not babbling or making any noises, a key marker for learning language. He was not responding when his parents called his name. Finally the formal diagnosis came. Shane had autism, a neurodevelopment disorder. The communication problems their son had, repetitive behavior they had seen, problems with social interaction, these are all hallmarks of autism.
“We were devastated to think that our child was developmentally disabled, there was no cure. What’s his future going to look like? Will he talk? Will he walk? Will he do anything that typical kids do? … You start living first in denial, then you have to move forward and you have to research the best types of services and therapies and it’s overwhelming.”
When Shane was 3, his brother, Joe, was born. By the time Joe was 20 months, he, too, was diagnosed with autism. Recent research shows that having a child with autism increases the next child’s risk by almost 20 percent. At the time Joe was born, the estimates had been three to ten percent. There is no prenatal test to detect autism.
From the time their older son was diagnosed, Eric and Cindy entered a world of intense advocacy and managing all types of therapy for both their sons. “We’ve had a lot of people and tutors and different people going in and out of the house,” Eric explained. “We’ve had them in speech therapy, occupational therapy, different types of therapies and training. Cindy was kind of like the program manager.”
Joe has moderate autism and, Cindy says, is definitely “more exhausting.” When he was younger, he would run off down the street. One time he got out of the house in the early morning hours. A neighbor called to alert them at 5am. The Eversons put key locks on all the doors after that. Shane has mild autism, and as a young boy had problems with speech and sensory issues. Like many children with autism, he was obsessed with routine. He would want his parents to take specific routes when coming home in the car. If not, he would start screaming.
Erica Frieze is a clinical psychologist at the UC Davis MIND Institute. She says the obsession with routine is very common in children with autism. “Kids with autism like sameness,” she said, “and they like to follow rules. So when those rules are changed, it’s difficult for them.” When kids act out, she says, parents have to maintain consistency.
In California, parents are eligible for services for their children at one of 21 regional centers run by the state’s Department of Developmental Services. Autistic children typically need everything from speech therapy to occupation therapy, help with behavior, early education and the list goes on. Children receive services at these centers until they are 3-years-old. At that point, the child transitions to the local school district and its special education programs. Eric and Cindy say they were fortunate to be able to supplement state programs with therapists they hired privately. In addition, they have a strong support network of family and friends.
Shannon Rosa also credits a strong network of family and friends in supporting her and her husband as they raise their autistic son Leo, 11. But when Leo was diagnosed at age 2, they initially felt alone. They didn’t know anyone with an autistic child. At that time, there was no central place to go for comprehensive information, Rosa says.
Rosa had a career as an independent writer and editor before Leo was born. Since he was diagnosed, she has trained her skills on autism, writing widely on the subject in numerous publications and blogs. In 2010, she co-founded The Thinking Person’s Guide to Autism website. She was senior editor of a book of the same title, published just last month. It has 54 contributors, from parents to professionals to people with autism. The editors wanted to compile the latest information they could find about the condition. “The other thing that was really missing was an understanding of what life could be like in the future for anyone with autism,” Rosa says. “We have a section in there with essays by people with autism so parents can have a glimpse of the future.” (She adds that the book was an “all-volunteer project” and that all profits from sale are going to two autism non-profits.)
That glimpse of the future is especially close to Rosa’s heart. She criticizes the media for conditioning people “to fear autism as the worst possible thing that can happen to us.” Instead, she encourages parents of autistic children to work on understanding them, and helping them to develop as fully as possible. “I see my son as a happy child who needs support in a lot of day to day activities. He needs one to one supervision, but, within that, I want people to try to accept him on his own terms,” she says. “Pity is of no use for us. What does pity do for us? Nothing. … Pity closes off opportunities. Patronizing closes off opportunities. As parents, it’s a responsibility to have our child be the best they can be.”
And helping children be the best they can be involves fighting for services, she says. “I know people who have gone to the mat with the regional centers and have had to be savvy, fearless and tenacious to get that funding.” Rosa described learning to advocate for one’s child as “another education” parents need to embark on. Early intervention is critical, she says.
Back at the Everson home, Shane is now 15. His brother Joe is 12. Those early years of therapy have helped both boys tremendously, their parents say. Shane, who didn’t talk at all until he was 4, now won’t stop talking. He has a cell phone and attends some mainstream classes at his school. Joe has more significant language difficulties. His parents think it is unlikely he will ever be able to live on his own. “It’s interesting raising two autistic kids with such different needs,” Cindy Everson says. “All children have potential to reach; as parents we help them reach their potential. We’re doing that with our kids. We have two kids with autism that are affected differently and we try to do our best every day to help them reach their potential.”
From those first weeks of devastation and denial after Shane’s diagnosis, Eric and Cindy, have formed a rich family life. “We had to really come to that point of acceptance to let us really be able to accept the fact that our family is a different family, but that’s OK. Our kids have brought us so much joy,” Cindy says. “I feel like my character is stronger because of all the things they’ve taught me. You see progress and it becomes what you do. We have an awesome time with our kids.”