Many parents have experienced the heart-stopping moment of losing a child in a crowd, but for Glenda Gaither, the anxiety is always compounded by the fact her son, CJ has autism spectrum disorder. This makes it difficult for him to communicate to others, and it also makes him less aware of dangerous situations.
"I cannot explain to you the fear," she said, recalling the first time CJ wandered off from home. She knew he couldn't tell anyone his name or even ask for help if he needed it because he was non-verbal at the time.
She also knew there was an old well in the back of the property and children with ASD tend to be attracted to water.
"I had all these emotions going on," Gaither said, who called nearly all of her family members to search for him. "I was so, so upset."
CJ was eventually located less than a block from the house happily playing with a puppy in a neighbor's yard, but the incident illustrates how everyday situations are much more complicated when raising a child on the autism spectrum.
ASD, a set of developmental and neurological disorders characterized by impaired social interaction and communication skills, affects one in every 150 children and is much more prevalent in boys than girls, according to the Centers for Disease Control. In Georgia, the rate is closer to one in 131, according to the Autism Speaks regional office. It's referred to as a spectrum because it can manifest itself in slightly different ways for each child, and can range from the high-functioning, such as those with Asperger's syndrome, to the low functioning. The cause for it is unknown and there is no cure, but experts recommend that early diagnosis and intervention can improve a child's chances of functioning in society.
For three local parents and caretakers, the experience of raising a child with ASD has been a trying, frustrating, consuming and ultimately rewarding one.
Covington native Gaither has been organizing support groups and events in Newton County for the sometimes weary but dedicated families of children with ASD since 2001.
Her son, CJ, now 12, was diagnosed at 18 months of age and is now enrolled in programs at the Marcus Institute in Atlanta.
Linda Parker's grandson, Robbie, was not diagnosed until he was around 8 or 9 years old but is doing wonderfully now in a supportive program at Veteran's Middle School, she said. Looking back, she recognizes that her own son, Robbie's father, might have had ASD as well, but was never diagnosed.
Mary Rogers, whose 9-year-old son, Camron, and family used to live in Covington but recently moved to Conyers, described many of the daily frustrations and misunderstandings she experienced with the outside world regarding her son.
All three women described facing seemingly endless obstacles and fighting for the chance for their child to have a happy, full life.
"What you want for your child is the same as what we want for ours," Gaither said.
Children with ASD often have difficulty processing and integrating different sensory experiences. Sights, sounds, smells and textures that go unnoticed by other people, who unconsciously process and ignore them, can stand out excruciatingly to those with ASD and cause them to become upset.
"They hear every little thing," Gaither said.
Parker described how her grandson, Robbie, became overwhelmed by the music and noise while visiting a new church and began covering his ears and rocking.
For Camron, it's when the lights go out during lunch or movie times at school that especially upsets him, Rogers said. To give him a sense of control, he carries around a small pen-flashlight.
"It makes a world of difference," Rogers said. "He knows everything's OK and the lights will come back on."
Rogers described how food was a challenge for Camron, who eats only certain colors and textures. It was an enormous accomplishment when he recently cleaned his plate, the result of a food therapy program.
"I know it sounds silly to outsiders, but to my son, it makes the difference of a day going by smoothly or not," Rogers said.
Routines and the difficulty in straying from routines plays a big part in their lives.
Parker said it was difficult for her grandson to adjust from school to vacation and back again. Gaither said having extended school schedules for their kids often helps.
Even trying to play little league became a Herculean task, Rogers said.
While they were living in Covington, Camron had a wonderful experience playing Newton Recreation baseball under a coach who had a son with ASD. But the next year under a different coach was a very different experience, Rogers said. Camron had a meltdown on the first day of practice, which the coach made a wisecrack about, said Rogers.
It went downhill after that, she said, as she saw her son isolated and gradually excluded from practices.
"My son was too naïve to know he was being discriminated against," Rogers said. "But I did, and it hurt my heart."
All three caretakers expressed apprehension of their children moving out into the wider world.
While all parents might have these kinds of apprehensions, for those families with ASD children, even something as simple as going to a public bathroom can be nerve-wracking.
"When he has to use the men's bathroom, that's a scary thing, with all the stories that you hear," Gaither said.
"He's at the age where he doesn't want mommy to go with him to the bathroom," Rogers said, describing a recent incident at a restaurant. "He wasn't in there but three minutes and came out screaming 'The man, the man!'" It took a long time before she could calm him down enough to find out that a man standing at the sink had replied to Camron's greeting with a deep scratchy voice.
They also wonder what their kids will do once they leave school.
"After school, there's not anything for students once they graduate," Gaither said. "It's a huge concern for parents with special needs children,"
Therapy and Resources
The new emphasis on finding a cure for autism is great, Gaither said. But, "If you ask most families if they'd like to see research or resources, they'd say resources," she said.
She lamented how the programs their children needed are mostly located all the way out in Roswell or Atlanta, with very little available locally. Even though early diagnosis and intervention is key, parents often have to wait months just to get their children diagnosed, much less into programs, she said.
"Therapy is so important," Rogers said. "It makes a world of difference whether your child can make it in this world as an adult."
Unfortunately, the one-on-one therapy outside of school that makes that difference is often not covered by private insurance, Gaither said. Middle-class families who make too much to qualify for Medicaid can find themselves without access to the therapists and resources they need, she pointed out.
Besides having to deal with ignorance from the outside world, the caretakers expressed frustration at dealing with ignorance from people who should know about ASD, such as doctors and pediatricians.
"People that you expect to understand, they don't have a clue," Gaither said.
Gaither described how she once went to a gastrologist who claimed he had experience working with autistic children. But at the appointment, when her son became restless around the examining table, which he associated with shots, the doctor asked Gaither, "He's not going to bite me, is he?"
They also expressed frustration with how they felt like parents were not listened to by the experts, sometimes. They lamented how they would like to see more understanding from school authorities for things like absences due to doctor's visits and more adherence to the individualized education plans.
Despite all the challenges, the women also describe the joys of having children with ASD, whom they described as sweet and loving and having taught them the virtue of patience.
"They have interests, they have personalities," Gaither said. "If you take the time to talk to them, you might find you have a best friend."
"I wish things came easier for Camron, but never would I change one thing about him," Rogers said. "I'm blessed that God chose Camron to be mine."