Story URL: http://news.medill.northwestern.edu/washington/news.aspx?id=93475
Story Retrieval Date: 5/24/2013 9:03:39 AM CST
PDD-NOS: Pervasive Developmental Disorder - Not Otherwise Specified, "a condition on the spectrum that has those with it exhibiting some, but not all, of the symptoms associated with classic autism. That can include difficulty socializing with others, repetitive behaviors, and heightened sensitivities to certain stimuli."
Asperger's Syndrome: "A neurological disorder that, like others on the spectrum, is marked by difficulties in communication and social interaction. The set of characteristics easily identified with the condition was first identified by Austrian pediatrician Hans Asperger."
Autism spectrum: The concept that there are varying degrees of the disorder -- so one autistic person may not display the same characteristics as another.
Information courtesy of AutismSpeaks.org
WASHINGTON – Eleven-year-old Sam Debold is a pretty remarkable kid. He’s got perfect pitch – play a note and he’ll identify it and replicate it – and he’s an expert ice skater. He can tell you, with little hesitation, what day of the week your birthday fell on.
“This year? It’ll be on a Tuesday.”
“That was on a Sunday.”
Sam’s got his dad’s nose and his mom’s smile. And, most of the time, he’s all smiles.
But his cheery demeanor and boundless energy – don’t try to keep up with him when he blazes past on his bike – can’t begin to tell the whole story of Sam. He’s faced an uphill struggle since he was a toddler.
Just before Sam turned three, doctors told his family he has PDD-NOS – a mouthful of letters and a bombshell of a diagnosis. Sam has a form of high-functioning autism.
That trip to the doctor is one his mom remembers with painful clarity.
“When we got it (the diagnosis), it’s one of those days I still remember what clothes I had on, where the car was parked in the parking lot of the doctor’s office, what the weather was like,” said Vicky Debold, Sam’s mom. “It was almost as if the world just stopped. And it took a good week, week-and-a-half, before I felt like I wasn’t crying all day long.”
Having autism can mean many things. Some people just have trouble with social interaction. Others can’t speak and need constant care.
“We say autism spectrum disorders because autism affects people with varying degrees,” said Carin Yavorcik, spokeswoman for the Autism Society of America. “Maybe they just have trouble with social instances. Maybe there are communication issues. One of the most important things to know is that it’s treatable.”
Sam has had extensive treatment. The Debold family rallied around him after his diagnosis. At the time, Sam had lost almost all of his verbal ability.
“He had always been a little delayed in his development,” said David Debold, Sam’s dad. “He started speaking later than normal. But when he did start his speech, he was learning certain syllables. He was learning certain words, and at some point it just stopped. We weren’t quite sure what to make of that.”
With an exhaustive plan – that encompassed everything from a dairy-free diet to speech and music therapists – Sam’s personality re-emerged. His parents aren’t sure what it was that brought Sam out of his non-verbal fog. But Sam started kindergarten on time, something doctors thought might never happen.
“That was a very, very exciting day, the day he got on the school bus to actually go to school to kindergarten, I was like ‘yes!’” Vicky said with a smile and a pump of her fist.
A SIMILAR DIAGNOSIS, A DIFFERENT LIFE
John Elder Robison, 50, has achieved great success in life. He’s the owner of a luxury car restoration company in western Massachusetts. He’s hit the road with the band KISS – making many of their memorable pyrotechnics – made amplifiers for Pink Floyd and is a New York Times bestselling author. Robison is also married and has a teenage son.
But if you had met him 20, 30 or even 40 years ago, you probably wouldn’t have been able to see the fruitful life that lay ahead.
Robison’s childhood was isolated and lonely; he dropped out of high school as a result. Robison wasn’t being difficult or misbehaving. It was because he had undiagnosed Asperger’s syndrome – a high-functioning form of autism.
“My business dealt with the public and through the company I became friends with a therapist,” Robison said. “And one day he came in with a book and he said, ‘you know therapists learn not to diagnose their friends if they want to have friends, but I’ve got this book that describes you to a T.’”
Robison said for many years he felt there was something wrong with him, something that may never be fixed.
“I had tried to convince myself that I wasn’t a sociopath or retarded or any of these other things but you hear that stuff and it kind of has a corrosive effect on you. You never really get away from believing that maybe it’s true. Reading about people like me in that book was just the most liberating and remarkable thing.”
A DISORDER THAT BRINGS SPECIAL GIFTS
Though there are obvious disadvantages to being diagnosed with autism – from social isolation to bodily twitches, all in varying degrees in each person -- there are some unique gifts that can come from the disorder.
Sam Debold is an expert at recalling dates and he’s a stellar athlete. He traveled with his hockey team to Canada to compete in a tournament; Sam scored three goals in one game.
“He’s got some amazing things that he can do that I’ve never met anyone else who he could do,” said his mom, Vicky.
Robison said he can “see into music,” which is what allowed him to hit the road with the band KISS. He can tinker with electronics and cars – something that helped him build up his car refinishing business from nothing.
He also wrote about his life with Asperger’s in his book “Look Me in the Eye,” a reference to his own difficulty looking into people’s eyes when he talks to them – a common trait among people with Asperger’s.
A common misconception about autism of any sort is that the diagnosis equals a life-long sentence for an unhappy and unfulfilled life.
Perhaps the worst of all misconceptions is that someone with autism can’t love or feel emotions. But watch Sam snuggle up to his favorite stuffed animal – a light brown dog named Buster – or look at the lumbering Robison pet his old, blind dog behind the ears and you’ll see a very different story.
“You hear people with autism can’t love or can’t show affection. It’s definitely not true,” said Yavorcik of the Autism Society of America. “The individual may show it in a different way.”
She should know. She has a 20-year-old brother who has high-functioning autism.
“I don’t live at home any more but when I come home, my brother comes running and screams my name,” she said. “He’s so happy to see me.”