Autism and Isolation
When Bobby Meredith was 18 months old he could count to 20, say his ABCs and call his parents by name. But just as his speech and social skills were supposed to develop further, they stopped.
Today, Bobby is 12 years old. Before his 3rd birthday he was diagnosed as severely autistic. He’s one of many children who struggle with a disorder with no clear cause or cure.
The Autism Society of North Carolina says Autism Spectrum Disorder (ASD) covers a broad range of disorders from autism to Asperger’s syndrome. The disorder impacts a person’s ability to process what is happening around them. Autism affects the brain so that many children with ASD have varying degrees of difficulty with communication, behavioral and social interaction skills.
According to the TEACHH Autism Program Web site, between 25 and 30,000 people in North Carolina have been diagnosed with autism. The site says that autism is one of the most common developmental disorders affecting one out of every 166 children. Despite these numbers, it’s a disorder that many parents feel the general public still doesn’t understand.
Dwight and Deborah Meredith were living in Atlanta when Bobby was born. One of the reasons they moved back to their native North Carolina was to try to find better support services for Bobby. It took time, but now they feel their son is getting the help he needs. Bobby attends the McIver Education Center in Greensboro, a public school for special-needs children.
Bobby does not talk, but he is affectionate with his parents and 14-year-old brother Jesse. He shows clear signs of intelligence. For instance, when computer games from Amazon.com started showing up in the Merediths’ mailbox, Dwight did some digging and discovered Bobby had gone online and ordered them.
However, the two main goals in Bobby’s first IEP (Individual Education Plan) were talking and toilet-training. Years later, those are still goals that Bobby is working toward.
“We’ve made lots of progress, but it is a stubborn fact that those remain at the top of our list,” Dwight says. “Bobby can’t say ‘I don’t wish to do that now, I’ll do it in a minute.’ He has very few ways to communicate this pressure. Because he is bound by routine he wants things to work, he wants it to be the same. When one of his music devices doesn’t work because the batteries are dead, it’s a major crisis, because Bobby just wants things to be right and he has no way to express that.”
Because children with ASD have difficulty communicating, it often leads to public tantrums when they want to express themselves. For parents, this means being very selective about the places they go or the restaurants where they eat. For some, it leads to a feeling of isolation.
Some parents of autistic children are finding solace by meeting with each other at Calvary Baptist Church in Winston-Salem. Danielle Horsley has been going to these parent meetings to talk about her son Aaron, 5, who was diagnosed with severe autism when he was 14 months old. She says the group is a place parents can get together to share ideas and hear other people’s stories.
“Mostly we share information. We’ve found different things that help our children and different things we’ve done. We’ve been so alone it’s nice to hear what other people are doing,” Horsley says.
Jan Badger is also part of the parent’s group at Calvary. Her son Riley, 3, was diagnosed as mild to moderate on the autism spectrum when he was 2. The cause of ASD is not known, but Badger saw warning signs when Riley was a baby.
“There is speculation I think that Riley was born with something, because when he was very little and we would hold him in front of a mirror, he wouldn’t even look,” Badger says. “I would be tapping on the mirror, and he would look everywhere but at that baby in the mirror.”
Badger says the parents’ group gives her a chance to be around other parents who understand what it’s like to be out in public and have their child throw a tantrum.
Like Bobby Meredith, Riley lost his language when he was about 18 months old. Recently, however, Riley has started work with a therapist on sign language. Badger says since the therapy began Riley is speaking in complete sentences and making eye contact.
“As soon as we started him on sign language the words started coming,” she says. “It was like his brain needed that to make the connection.”
The Merediths have also seen great improvement in Bobby’s behavior since he began working with Russell Morgan of Morgan Support Services. Morgan is a CAP (Community Alternatives Program) worker that the Merediths chose from a list provided by Bobby’s case manager. Morgan works with Bobby for several hours each day Monday through Thursday and spends every other Saturday with him as well. In addition to working with Bobby on specific goals such as going to the bathroom on request, Morgan is Bobby’s “outlet to the community.” He takes Bobby to the mall, to McDonald’s for his favorite milkshake and other places. Morgan says he has never worked this closely with one person and their family.
“In all the experiences I’ve had, I’ve never been as mentally involved with a family situation as I am here just because you’ve got parents ... they are not just sitting back watching,” Morgan says. “They’re in the game. They are actively playing and almost by osmosis you’ve got to get in the game, too.”
Even though Bobby is progressing, the Merediths know the clock is ticking. Bobby will have to leave the school system when he is 22, and they want to make sure he has the skills he needs to be able to live in a good place when they are gone.
“At some point we need Bobby to have a set of skills that make him a candidate for some other arrangement of living where he can be permanent, safe, treated with respect and maybe a little love, and he can find some measure of peace and happiness,” Dwight says.
“Ten years are going to pass in the blink of an eye. We have a lot of ground to cover in the next 10 years, and we’ve got no time to waste.”
The road can be very challenging for parents of children with ASD. Sometimes progress is measured in very small increments, but the love between the Merediths and other families of children with ASD is readily apparent and strong.
“Aaron is one of the biggest blessings in my entire life,” Horsley says. “He is a sweet, wonderful special child. He is always smiling; he may not be smiling at me. It’s a hard thing [sometimes] to have him, but at least he’s happy.”
“[Riley] has nothing to be ashamed of,” Badger says. “He’s a bright little kid, he just has a different way of learning.”
For More Information
Autism Society of North Carolina
Triad Regional Office
810 Warren St.
The Guilford Center
201 N. Eugene St.
Children’s Developmental Services Agency
Wake Forest University Baptist Medical Center
3325 Silas Creek Parkway
Children’s Developmental Services Agency
122 North Elm St. Suite 400
Michael Huie, a freelance writer, lives in Winston-Salem and is the father of one.