Craig Williams chuckled when he recalled his son’s first foray onto the basketball court. Instead of missing the backboard or kicking the ball out of bounds like his less-than-athletic pee-wee peers, he flung it into the Bloomington Sportsplex bleachers.
“I’m sitting there in the stands thinking, ‘That is different,’” dad said with a smile. “That is not like the other kids at all.”
Williams sprinkled a 61-minute conversation about his son with similar moments of reserved but good humor. But his countenance hardened when he reflected upon a recently unearthed photograph of father and son at 9 months old.
“That was before I knew he was autistic,” he said.
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Soon after that memorable moment was captured on film, Williams and his wife started noticing odd behaviors from their oldest. Before he could stand, the boy was transfixed by spinning objects. And from the moment he started walking, he spun in circles and paced a lot. He ran back and forth between their stairs and couch, over and over and over.
“Everyone would say, ‘That’s kind of funny,’” Williams said. “I’d think, ‘Funny yeah, but there’s something going on here.’”
It wouldn’t be until the boy started school that the family made the trip to Riley Hospital for Children in Indianapolis, where a team of specialists evaluated him. Near the end of the process, after mother, father and son had all been interviewed, the parents asked one of the doctors for her insight.
“Oh that’s Asperger’s,” she told them.
Williams explained his family’s approach to their child’s Asperger’s Disorder in an e-mail to The Bloomington Alternative. They are private about it, he wrote, except with select friends and the schools. But he did agree to an interview to discuss his experience. Craig Williams is not his real name.
"While Asperger’s is commonly referred to as autism, clinically speaking it is not."
Over a locally brewed pale ale at a downtown eatery, the father of two often referred to his son as “autistic,” as he did when reminded of the photo. “He has Asperger’s,” he said. “He’s not profoundly autistic.”
While Asperger’s is commonly referred to as autism, clinically speaking it is not. It’s one of five Pervasive Developmental Disorders (PDD), along with Autistic Disorder, Pervasive Developmental Disorder–Not Otherwise Specified (PDD-NOS), Rhett’s Disorder and Childhood Disintegrative Disorder.
Because of similarities in symptoms and diagnostic criteria, Asperger’s, autism and PDD-NOS are collectively known as Autism Spectrum Disorders (ASDs).
The PDD-NOS category includes “atypical autism,” which the Diagnostic and Statistical Manual of Mental Health Disorders, Fourth Edition (DSM-IV) says differs from the other two in a number of ways. The onset of symptoms, for example, appears at later ages.
One criteria for Asperger’s and Autistic Disorders is an onset before age 3, according to the DSM-IV, which is published by the American Psychiatric Association. And the two disorders share the same criteria for social and behavioral impairments.
Impaired language, on the other hand, is a component of Autistic Disorder but not Asperger’s. Linguistically, children with Asperger’s develop normally. They use single words by age 2 and understandable phrases by 3, the DSM-IV says.
Nor do children with Asperger’s experience the “clinically significant” delays or impairments in cognitive development that kids with autism do. Asperger’s falls on the “high-functioning end” of the autism spectrum.
“Aspies,” as they are sometimes called, are not only intellectually equal to their peers, they are often gifted. Williams said it has become common practice to retroactively assign Asperger’s diagnoses to historically significant figures. A Google search for “Asperger’s and genius” confirmed: Lewis Carroll, Charles Darwin, Albert Einstein, Thomas Jefferson, Wolfgang Mozart.
Williams said his son exhibited many of the typical Asperger’s traits. He began manifesting symptoms at around 1. And his early obsession with spinning objects was more than a catalyst for tops as presents. “You see that with Asperger’s,” he said. “It’s kind of a marker.”
"Linguistically, children with Asperger’s develop normally."
His son’s verbal abilities developed normally, but “in a funny way.” Family and friends called him the “little narrator” because he never referred to himself in the first person, for example.
And he has some exceptional abilities, especially his talent for drawing. “The way I explain it to him is, ‘Can anybody draw like you?’” Williams said. “No. Truly, no. Your dad can’t draw as well as you.’”
Eighty percent of the time, Williams added, his son appears normal. “By looking at him, if you had a conversation with him, you’d think, ‘Wow, what a precocious, bright young kid,’” he said.
But over time, you’d see the behaviors. Your conversation, for example, would be one-sided. “He doesn’t know when to give someone time to speak,” Williams said.
And there will always be that other 20 percent of the time, like when his son puts his head and fists down and “just rubs along the floor,” he added. “He does that at home, and it’s okay. But he’s going to do that in the classroom at some point.”
This conflict between their social and intellectual development creates unique challenges for kids with Asperger’s, and those who interact with them, Williams said. “They appear so capable of being normal, but they can’t be.”
"'Aspies,' as they are sometimes called, are not only intellectually equal to their peers, they are often gifted."
The appearance of normalcy makes it difficult for the families of children with Asperger’s to accept them as special-needs kids, Williams said. Their primary problems involve dealing with other people, and that tendency is masked when they are small. Much of their interaction with other children is “parallel play” – one plays with blocks, the other colors – so it’s often hard to recognize the social impairments.
“It’s when they start to get older and share things that you start to notice it,” Williams said. In their case, it happened during the pre-school years. “He just wasn’t playing well with other kids.”
But even then acceptance came hard. “I don’t think that we were avoiding it necessarily,” he said of seeking a diagnosis. “But in the back of our minds, we knew there was probably something.”
They also did not want to slap a label on their child at age 3. “We probably, subconsciously, avoided a lot of that stuff because we wanted to make damned sure that there was a problem here.”
Williams likened the recognition process to Elizabeth Kubler Ross’s five stages of grief: denial, anger, bargaining, depression, acceptance. The first four were no longer options once the young Williams started to school. He got segregated from other students at recess. He got sent to the principal’s office. He got sent home.
After his kindergarten teacher suggested they have the boy tested, it took some time to work through the family pediatrician, specialists at Riley and school psychologists and administrators. But once there was an Asperger’s diagnosis, their son began special education classes.
"A Google search for 'Asperger’s and genius' confirmed: Lewis Carroll, Charles Darwin, Albert Einstein, Thomas Jefferson, Wolfgang Mozart."
The worst of the school problems subsided some time ago, but to this day those early experiences still haunt Williams. “When my office phone rings, I think it’s the school,” he said.
While he has grown more comfortable with the school’s ability to address his child’s special needs, Williams still worries about the school setting, whether it is best for his boy. The “metric” he now uses to measure his son’s well-being is self-esteem. He recalled an incident from a large gathering at school one evening.
“I watched my son run across the cafeteria,” he said, “and he went and stood by a wall. And this other girl, who was probably about his age, started running towards him, and the minute she saw him, she turned and ran the other way.”
Williams said he was most likely the only person in the crowded room to notice. But his son is aware of his differences.
“Late at night, when they’re going down to sleep, that’s when kids really open up to their parents,” he said. “I’ll say, ‘Why did you get sent home today?’ And he’ll say, ‘I was a bad kid. Yeah, I’m bad. Nobody wants to play with me dad. Nobody will hang out with me. Everybody runs away from me.’”
“Just think what it’s going to be like when he’s 13,” Williams said. “They’re not even trying to be mean now. Wait till they become mean.”
Williams has no difficulty empathizing with his son’s pain. The parents of children on the autism spectrum likewise experience ostracism.
He cited an infamous incident this past July at Smitty’s Restaurant in Edmonton, Canada, when the family of a 5-year-old girl with autism was asked to leave after she started screaming and pulling her hair. According to the Edmonton Sun, the girl was upset that the type of pizza she wanted was not on the menu.
"MCCSC data show students receiving special education under the autistic category jumped 360 percent from 1998 to 2008, from 51 to 184."
The girl’s mother said on a Facebook page that the restaurant manager told her, "If this is how she acts with autism, you shouldn’t take her out in public.”
Williams said the reactions parents get aren’t always that blunt, but the message is usually clear.
“People think, ‘Jesus, what the hell kind of parent are you?’” he said. “’You got a brat. Can’t you control that kid? Just tell him to shut up.’”
While such reactions are like “knives in the back,” Williams said he understands them and doesn’t blame the parents. After all, it wasn’t that long ago that he didn’t “get it.”
But he said individuals would be well-advised to adapt. Citizens with developmental disabilities in general, and autism in particular, constitute a large segment of American society. And their numbers are dramatically increasing.
According to data from the Indiana Department of Education, 17 percent of students in the Monroe County Community School Corp. (MCCSC) receive special education. The percentage has increased 4 percent in the past decade.
MCCSC data show students receiving special education under the autistic category jumped 360 percent from 1998 to 2008, from 51 to 184.
Only somewhat tongue-in-cheek, Williams suggested a day’s worth of awareness-raising events called, “Get Over It, Bloomington, It’s Autism.” He paraphrased a youth with high-functioning autism he once saw on a video: “I’m not the one with the problem. It’s everybody else.”
Indeed, many children with Asperger’s have bright futures, Williams added. “When you think about somebody like my son, there’s no reason why he can’t live a perfectly productive life. He’s not broken.”
Steven Higgs can be reached at editor@BloomingtonAlternative.com.