GATES — Despite the fact that Johnathan Casserly and his twin sister, Brianna, were born seven weeks early, at first they both seemed to be happy and healthy babies, their mother, Ana, recently told the Catholic Courier.
Before the twins had reached their second birthday, however, Casserly noticed that while Brianna had learned to talk, Johnathan didn’t speak or make eye contact. She asked her son’s pediatrician if Johnathan could have an autism-spectrum disorder, but the pediatrician told her she was merely jumping to conclusions, she recalled.
During a family vacation to a beach a few years later, however, Casserly noticed Johnathan was terrified of sand and refused to walk on it. She brought him to a doctor at Rochester’s Strong Memorial Hospital, where 4-year-old Johnathan was diagnosed with autism.
The doctor told Casserly not to expect any miracles, but she said she was not about to give up on her son.
“I told him the next time I see you, my son is going to know how to speak, how to read,” she said.
Casserly became her son’s strongest advocate, hungrily seeking out information about autism-spectrum disorders. After arming herself with knowledge, she worked with the Spencerport and Gates-Chili school districts to make sure her son received all the services and assistance he needed to help him succeed.
Casserly is planning to bring Johnathan, now 8, to see the doctor soon. Not only does her son now read and speak, but he’s also good at math and using computers, she said.
Johnathan’s struggle is not unique. Autism-spectrum disorders occur in approximately one out of every 150 8-year-old children in the United States, according to the Centers for Disease Control and Prevention’s Autism and Developmental Disabilities Monitoring Network.
Autism-spectrum disorders — including autism — are developmental disabilities that are usually characterized by impaired communication and social interaction, as well as the presence of unusual, repetitive or severely limited behaviors and interests, according to the CDC. Children with autism may appear to develop normally, only to later withdraw and become indifferent to social engagement, according to the National Institute of Neurological Disorders and Stroke.
Autism is usually diagnosed when children are between the ages of 18 months and 3 years old, according to Lynn Cole, director of the Andrew J. Kirch Developmental Services Center at Golisano Children’s Hospital at Strong.The Kirch Center serves nearly 800 children with autism-spectrum disorders each year, and the center provides diagnostic assessments for thousands of children annually, she said.
“A diagnosis is kind of a double-edged sword,” Cole said. “Having a diagnosis is a bit of a relief because most families have realized there’s something not quite right with their children for a long time.”
After learning more about their child’s disability, many parents are able to better understand and interact with their children. When parents know exactly what they’re dealing with it’s also easier for them to work with school officials and determine what type of intervention services their children need, Cole said.
“On the other hand, it’s quite difficult to cope with, because you have a diagnosis of what is often considered a lifelong disability,” she added.
It’s impossible to predict with any certainty how each child will mature and how his or her skills will develop and improve, she said. While these children will probably struggle with some things for the rest of their lives, they do have strengths, which are sometimes underestimated by the general public.
“Many children (with autism-spectrum disorders) do well with skills that require memorization and factual knowledge,” she said.
Casserly said she is proud of Johnathan’s progress. He attends Florence Brasser Elementary School in Gates and is enrolled in religious-education classes at St. Theodore Parish in Gates, where he recently made his first Communion. Learning may be more challenging for Johnathan and other children with autism-spectrum disorders, but Casserly wants people to know that parents of such children only want the same opportunities for their children that are granted automatically to other children.
“They’re not different from your children,” Casserly said. “Please, when you see the child, don’t see the disability, because they’re all the same inside. Take away the labels.”
EDITOR’S NOTE: For more information about autism-spectrum disorders, visit the Centers for Disease Control and Prevention at www.cdc.gov or the National Institute of Neurological Disorders and Stroke at www.ninds.nih.gov.