Ben Harsy, 5, plays with a dinosaur on a chair in his family’s living room in their house…
As his mother, Crystal, sits on the edge of the footstool in front of her son, Ben continues to concentrate on his dinosaur, immersed in his own world.
At 12 months old, Ben said his first word, “bye-bye.” He would look at a person and even wave. His vocabulary expanded to “ma-ma” and “dad,” but somewhere between 15 and 18 months, development stopped. Ben would no longer make eye contact with anyone except his parents and his grandmother, and even that was a struggle.
When taken out in public, he wouldn’t smile. Though he was a happy child at home, when in public, people would remark on his somber demeanor. His mother didn’t understand why Ben seemed to be pulling away from the world.
“You could almost start to feel this emotional disconnect,” Crystal said.
When he turned 2, Ben was most content on his own; unlike a typical child his age, he wasn’t getting into things or causing trouble. He never seemed to seek interaction. When playing with toys, instead of imitating the sounds of cars or racing them around the house, he would line them up in a row.
Crystal said that any time she would suspect there was something wrong, Ben would seem to be fine. However, the red flags piled up until the Harsys could no longer deny them, especially since his speech hadn’t developed past a few words.
“The hardest part is when you’re doing the research, wondering what it could be,” said Brice, Ben’s father.
They began early intervention speech therapy, but no one mentioned autism until Ben was almost 3 years old and visited [CASD]…
“I don’t think I’m exaggerating when I say it’s second to losing your child in death,” Crystal said of the change in Ben from the first year of his life to the third.
“It was like his soul was taken away from us and we fight every day to bring him back.”
…In Southern Illinois, the Center for Autism Spectrum Disorders is the only option for treatment outside of limited services available in schools or traveling to St. Louis or another metropolitan area.
“We are the place that provides assessment of children with autism, we get the call from the mother or we get the referral from the physician or other service providers,” [said Dr. Anthony Cuvo, a professor of behavior analysis and therapy at Southern Illinois University in Carbondale and the director of CASD.]
They also provide a variety of intervention or therapy services, as well as teaching, research and serving as a resource for area schools. If they’re lucky, they get the kids at 2 or 3 years old, where early intervention is critical.
After a semester of individual therapy, where staff will get to know the children, their strengths and areas that need work, the children will then be taught basic skills, working one on one and with a group, the goal being full inclusion in a classroom setting.
“We’re just lucky to be in the vicinity of a treatment service facility,” Crystal said. “These are services that aren’t even close to
being widely available.”
Ben was originally diagnosed in the moderate range. He had very limited communication skills, some sensory issues, some repetitive behaviors and a limited capacity for social interaction.
“His communication and social interaction have seen the greatest strides,” Crystal said. "Both of those areas still have the furthest to go. He’s learned to greet people, make eye contact and speak first.
“He’s learned to play with kids his own age, appropriately. Before, he just wanted to stay in his own world. He was very content, happy, a loving child - but he did not care to interact with the rest of the world.”
…The Harsys believe they did everything new parents were supposed to do; read books on care, took Ben to the doctor and followed every instruction carefully.
“When you start to notice something isn’t going right, you feel like you’ve failed somewhere as a parent,” Crystal said. “We still don’t know why, so we still wonder what we might have done to make it different.”
…“They should be initially concerned about any developmental delay,” Cuvo said.
Anomalies parents might notice in motor behavior, language acquisition and social behavior might not be related to autism, but should be brought to the attention of a pediatrician.
“The American Academy of Pediatrics recently came out with a recommendation that children be specifically screened for autism, that this should be part of ‘well baby’ checks at 18 months and 24 months, that they be screened for autism in addition to the normal developmental screening,” Cuvo said.
…For [CASD], Dr. Cuvo would like to see more space and resources to be able to treat more children. However, in a larger sense, the parents need to be empowered.
“What we need is for parents to have the resources so that they can shop for or obtain the kinds of services they need for their
children,” he said.
…“One of the things we know is that the parents of children with autism are an extraordinarily strong group,” he said…
“Good things are happening nationally in terms of autism and I think that the insurance and funding will follow.”
Ben has only been in treatment a short time. At this point, in a casual setting, one would never guess he is autistic.
“I can look back and say it was only two years ago he didn’t speak at all,” Crystal said. “Now he’s kind of like every other typical kid…”
The Harsys worry about Ben’s future as any other parent would about their child. They’re optimistic because of the growing awareness of autism…