Most anyone who is part of the Autism Community, would recognise the name Dr. Temple Grandin. But would you recognise the name: Eustacia Cutler?
By: Patrick Springer, INFORUM / Fargo, North Dakota
Colin Vieweg possesses a level of maturity beyond his years. He’s also prone to pronouncements delivered with an air of erudition that have earned him an affectionate family nickname: the Little Professor.
He started to read at the age of 3, a skill that was well established by kindergarten, leading him to announce: “Mom, I’m bored. I already know how to write my name.”
“He’s always been so bright and so charming,” his mother, Emily Vieweg, says. “He’s just a happy kid.”
Happy, but also troubled at times. Colin has an inability to read social cues that makes it difficult for him to form friendships. Small changes can loom as big disruptions, and his mood can abruptly switch from sunny to stormy.
The first hint of problems surfaced at age 5, when his mother noticed he was “a little bit hyper.”
His problems in social interactions weren’t evident when he started school. As a preschooler, in fact, he was enrolled in a special education program as a “typically developing peer” to provide a good model for disabled children.
But as he progressed in elementary school, problems became evident. At first specialists attributed his problems to a learning disorder. He was given a diagnosis of oppositional defiant.
Then, a therapist recognized symptoms that previously were overlooked. Colin has Asperger’s syndrome, an autism spectrum disorder.
Along with difficulty in social interactions, hallmarks of Asperger’s include repetitive routines or rituals, peculiarities in speech and language, including speaking in an overly formal manner or in a monotone, and taking figures of speech literally. Clumsiness is sometimes a factor.
At first, Vieweg was unwilling to accept that her son had an autistic disorder. The therapist said: “That’s fine. You can disagree with me.”
But in time, after reading about Asperger’s syndrome, she came to accept the diagnosis and its consequences.
“I said, ‘OK, he has Asperger’s. This is what it is,’ ” Vieweg says.
That was the beginning of her evolving understanding of a condition that partly defines her only child.
It took her another year to arrive at the conclusion that there was nothing intrinsic about her son to change; his brain just works in a different manner than most.
“You don’t have to fix him,” she says. “We have to teach and guide, but I don’t want to change who he is.”
Colin’s early days in school were difficult, but his family now is grateful for the way he is handled by a team of teachers and a specialist at Fargo’s Carl Ben Eielson Elementary School.
Switching from one class to another can cause anxiety, so Colin is alerted in advance so he can ease into the transition, with help from a teacher.
Because loud noises and a lot of activity can be bothersome, Colin is in a smaller “adaptive” physical education class. For the same reason he avoids riding on the school bus, and is allowed to use a different staircase.
Also, if he feels overwhelmed, he can seek refuge in an office.
A set of seemingly minor accommodations have made a big difference in helping Colin cope with the challenges of school, his family says.
After school, his maternal grandmother, JoAnne Vieweg, picks him up and takes him to her home in south Fargo. His first half hour is spent “decompressing” from the stresses of navigating social interactions all day at school that would seem routine for most.
He finds solace in a corner of the living room at the computer, where he is chuckling at some Chuck Norris jokes, and with his portable video game console.
From time to time, he emerges from his absorption to join a conversation between his mother, grandmother and a visitor.
“I was ignored by the teachers a lot,” he says of his early days at school.
His mother asks, “Is that how you felt?”
“That’s how it was,” he says.
The early tendency from some of his teachers was to blame Colin’s difficulties on parenting, JoAnne Vieweg says.
With time came greater understanding, including the realization that his temper flare-ups – his family calls them meltdowns and Colin calls them emotional storms – are best to let pass.
“You wait until he’s calm,” JoAnne says, adding that he can’t think clearly in the moment, or even recall what happened during a meltdown.
His disabilities are more than offset, his mother and grandmother say, by his abilities.
“He can build anything,” JoAnne Vieweg says. “He’s exceptionally talented in music. He has a beautiful singing voice.”
“Perfect pitch,” Emily says. “There’s just so many things he can do.”
Barb Stanton will never forget the first child she diagnosed as having Asperger’s syndrome.
His mother was sitting in her office, crying as she recited a litany of problems he’d had, in public and private schools. In desperation, she turned to home schooling.
Nothing worked. No one had the answers.
The boy, seated beside his mother, calmly corrected his mother’s recollection of dates and other details.
Suddenly it became clear to Stanton, an individual and family therapist, that the boy had Asperger’s. She realized that she had probably missed the condition in other children she had seen.
Later, she would be the professional who diagnosed Colin. Those like him, on the high-functioning end of the autism spectrum, are often overlooked or misdiagnosed, Stanton says.
“There’s not an obvious disability until something happens,” she says. “They have such amazing skills and talents and yet there are other things they just have difficulties with.”
Because of their abilities, high-functioning autistics often are told, in so many words, “You’re so smart, why can’t you?” Stanton says.
“A lot of these kids are blamed for behavioral problems when it’s how their brain processes,” she says.
“There’s certainly a tremendous lack of services in this community for children and adults on the autistic spectrum,” Stanton says. “What these kids need more than anything is understanding and compassion.”
Emily Vieweg worries about the day when Colin will leave home.
She sums up her view of the uncertain future with one word: “Terrifying.”
Will her son be able to cope with the many changes that go with the transition to college?
She hopes that he will be able to gauge his reactions with other people; that he will be able to recognize when others try to take advantage of him.
“I want him to be properly protected,” she says. Once Colin is adult, she wonders whether she will be able to protect him in the way she can now.
“Legally what will I be able to do to support him and protect him?” she says. “I think one of the things I think about is what skill sets is he going to need?”
Those with Asperger’s syndrome have difficulty with what are called executive functions: organizational skills, being ready for class, remembering homework assignments, breaking long-term projects into manageable pieces.
“That I see as a potential issue for him,” JoAnne says.
It will take time to provide answers for those questions. In the meantime, the Viewegs know what helps. A key ingredient is his relationship with his teachers.
“He needs to know that the teachers like him and want him to succeed,” Emily says. “He feels more comfortable knowing he has friends.”
She’s thankful for the support she has, from her family and others in the community. As a single parent with a special needs child, she is devoted to her son around the clock.
Some of her friends have accused her of hovering, but Emily thinks of it as monitoring.
“Ever since he’s been tiny, I’ve been mama tiger, protecting my cub,” Emily says. “I’m going to protect my kiddo.”