The ‘Gentle Giant’
One student’s quest to be refined rather than defined by Asperger’s syndrome
7:30 p.m. Feb. 21-23, 7:30 p.m. March 1 & 2 and 2:30 p.m. March 3
Swisher Theater, Jacksonville University, 2800 University Blvd., Arlington
Tickets: $10 general admission; $7 seniors & military; $5 students; free to JU students, faculty and staff
The Center for Disease Control (CDC) reported in 2012 that 1 in 88 children are on the autism spectrum, an increase of 23 percent since 2009 (78 percent since 2007). ASD affects nearly five times as many boys as girls. It's estimated that one in 54 boys are on the spectrum.
Earlier studies that blamed parents (so-called “refrigerator mothers”) and vaccinations for ASD have been largely discredited. A vast majority of scientists and researchers now agree that there is a genetic component to the disorders, and many believe that ASD might be caused by genetic predisposition in conjunction with certain environmental factors.
The most important thing for parents to do is to act quickly whenever there is a concern about a child’s development:
Talk to your child’s doctor about your concerns.
Call your local early intervention program or school system for an assessment.
You do not need a diagnosis to access services for your child.
Ian Jordan Chaille is a typical student at Jacksonville University. Like most college juniors, Chaille, who will be running the soundboard for the school’s presentations this week and next of “Laundry & Bourbon” and “Lone Star,” two one-act plays written by the late James McLure, thinks a lot about his future after graduation. The 21-year-old computer animation major and film minor dreams of landing a job at Pixar.
When he isn’t in class or studying, he likes playing “Halo” on Xbox 360, listening to heavy metal, hanging out with his friends, watching science fiction and Coen brothers’ movies — he’s a big fan of “The Big Lebowski” — participating in collegiate activities like the Alpha Psi Omega society, and riding rollercoasters (he holds season tickets to four amusement parks). And in the summer, he teaches private swim lessons and coaches children ages 4 to 18 on the local Argyle Waves Swim Team. He also has Asperger’s syndrome.
Like many with Asperger’s, Chaille comes across as quirky, even nerdy, lighting up when he talks about public transportation. Though he has a car and lives 15 minutes from campus, most mornings he boards a 6:40 a.m. bus to get to an 8 a.m. class. Visiting a new city is an exciting opportunity to experience its public transportation system. Rather than evoking abject terror, his first trip on the New York City subway system evoked palpable elation. He even likes — brace yourself — Greyhound.
“Even if it’s not the train, it’s the bus, as long as it’s public transit; I adore that,” he said.
Chaille was 3 years old when a teacher suggested that he wasn’t developing on the same schedule as his peers. His mother, Deborah Jordan, an assistant professor of theater at JU, didn’t waste any time having him tested. She already knew there was something different about her son, who was speaking in complete sentences by the age of 2. “I thought he was a genius,” she said, adding, “I still do.” At 4 years old, Chaille was in a classroom with other children of varying exceptionalities — or areas of functioning significantly different from the established norm — but it wasn’t until he was 6 that he was officially diagnosed with Asperger’s.
“I just happened to be at Nemours; the woman that was shadowing the woman at Hope Haven read his diagnosis and said, ‘He’s Asperger’s,’” Jordan said. Three years might seem like a long time, but many wait much longer for a diagnosis, particularly before this decade brought a greater awareness and access to information about Asperger’s and other autism spectrum disorders (ASD). The Internet is rife with horror stories about people with Asperger’s being misdiagnosed, medicated and treated for conditions they did not actually have, placed in classroom settings with children with far more serious developmental disorders and, in rare instances, even being institutionalized, for years before finally receiving an accurate diagnosis.
It took almost two decades for Matt Blocker, co-founder of the local group Adults With Asperger’s (meetup.com/Adults-with-Aspergers), to be diagnosed. “His initial diagnosis as an infant was cerebral palsy, which is a very generic term that is related to what they thought was brain damage,” his mother, Eileen Blocker, said. “He had hypotonia — low muscle tone — and a few other things, so they just assumed.”
At 17, Matt Blocker, who is now 34, was diagnosed with Asperger’s. “By the time somebody said that, I felt like there were autistic tendencies, but it really didn’t matter for us because he was an adult,” she said.
So what is Asperger’s?
“Asperger’s is a form of an autistic spectrum disorder; it’s on the high-functioning end of the spectrum. These are kids who typically have normal language abilities but have social skills deficits and some idiosyncratic tendencies,” said Dr. Michael J. De La Hunt, division chief of psychology and psychiatry at Nemours. “They have a hard time relating and empathically understanding how other people think and feel. They tend to be somewhat awkward and quirky. But they also typically, stereotypically maybe, tend to be extremely bright and talented, at least in one specific area of interest.”
ASD encompasses a wide range, including exceptionally gifted individuals who have never required treatment, cognitively delayed individuals with severe sensory sensitivity and little or no language skills, and everything in between. Though there are similarities among those within the spectrum, particularly within each sub-classification, there is no one-size-fits-all set of symptoms, treatments, medications or possibilities. People on the autism spectrum are, well, people — each as unique as a fingerprint or a strand of DNA.
People with Asperger’s often struggle to communicate the depth of their affection to the people in their lives; common stereotypes (which many believe are false) are that Asperger’s permanently inhibits an individual’s capacity for love or socialization.
But Chaille is not defined by these stereotypes. Mercy Carver coaches the swim team with Chaille and has known him since he joined the team at the age of 9. “He’s really helpful, sweet; he likes to help and really does care about everybody,” Carver said.
“If I were to describe [him], it would be my ‘gentle giant,’” his mother said. “He’s a very sweet boy; where he got that sweetness, I don’t know; it didn’t come from me.”
Chaille, who is 6 feet, 4 inches tall, says he has fun running the soundboard. “I love interacting with actors, with the stage manager and with the director herself.” His mother is directing the two plays.
There are characteristics that people with Asperger’s often share. “Their chatter tends to be expounding on in-depth topics that are of great interest to them, but not of great interest to the person they’re talking to,“ De La Hunt said. “There’s a certain tone in their voice. Professorial tone, nerdy, nasal tone, that’s a real tip-off.”
Hans Asperger, for whom the syndrome is named, discovered the condition simultaneously with Leo Kanner in the 1940s. Asperger referred to the children he studied as “little professors.” At the turn of this century, a Wired magazine article of the same title referred to high-functioning autism and Asperger’s as “The Geek Syndrome.” Matt Blocker’s nickname is “Mattipedia” because of his extensive knowledge of numerous topics. Particularly for someone his age, Chaille has a profoundly mature, thoughtful way of discussing himself and the world.
Both Blocker and Chaille have chosen careers in computers, a relatively common vocational path for high-functioning people on the spectrum.
Another similarity Chaille shares with Blocker and others with Asperger’s: He was bullied in childhood. In 2012, the Interactive Autism Network at Kennedy Krieger Institute released preliminary results of a nationwide survey. The survey found that children with ASD are three times more likely to be bullied (63 percent reported being bullied at some point in their lives; 39 percent within the last month) than siblings who were not on the spectrum. The study also found that children with Asperger’s are nearly twice as likely to be bullied as other children within the autism spectrum: 61 percent of children with Asperger’s reported they were currently bullied, compared to 28 percent to 37 percent of others on the spectrum.
Being bullied and having emotional rigidity — a frequent symptom — coupled with social difficulties, often cause children within the spectrum to become frustrated, even angry. But De La Hunt pointed out, “Anger is an issue, but not violence. [It] has more to do with low frustration tolerance.”
Eileen Blocker recalled a painful moment when her son was 7 or 8. “On the way to school … he asked me, ‘Am I retarded?’ ” she said.
“If there’s one thing that has broken my heart all the time raising [Chaille] is seeing how little tolerance and patience people have with people with behavioral issues,” Jordan said. “Autism and Asperger’s [are] a disability, just like if you needed a ramp.”
Neither Blocker nor Chaille looks back with much bitterness.
“I didn’t have that many friends back then, but what I’m just happy about in the end is that I still stayed myself,” Chaille said.
Matt Blocker wrote about bullying via email — a method of communication he prefers. “[I’m] not really bitter at all, it's just another thing that really helped me become the person that I am today.”
Chaille offers some recommendations to help those who don’t understand ASD: Limit children’s exposure to violence and teach them about ASD and other conditions. Jordan spent much of Chaille’s childhood educating other people about Asperger’s.
“We’re not really like everybody. Look it up, research a little, don’t be clueless and continue to be clueless about it,” he said. But he doesn’t regret being born with Asperger’s.
“There’s no cure for autism, and I’m really glad there isn’t, because if we were all the same, the world wouldn’t be very much fun.”