07-21-2006, 04:34 AM
By the way I am copying this article out of a magazeine. I am not sure if this is leagal or not, please let me know if I am breaking any laws.
BOY WONDER
Once we stoped trying to "fix"our autistic son, we started to appreciate the world as he saw it.
It was a moment I'd been dreading, and still, it managed to take me by surprise. When Ethan, the oldest of our three sons, was diagnosed with PDD-NOS, at first it sounded almost as though the neurologist, who had a few missing social skills himself, was speaking a foreign language. Then I realized that he was using a clinical term: "Do you mean autism?" I said, staring at the three-year-old boy I'd spent the whole morning prepping for this trip to the doctor's office: making sure he was well-rested, well-fed, boned up on his limited vocabulary -- all to escape this exact, life-ending diagnosis.
"That's it!" the doctor said excitedly. "PDD means he hasn't got every trait of classic autism, but it's still very serious. Basically you'll hope he can one day write a check, hold a simple job, things like this."
It took all my concentration not to cry in front of this man. I asked if there were any books he could recommend.
He thought for a while, as if he'd never heard the question before. Finally he said, "Rain Man is a good movie. Have you ever seen that one?"
Ethan was never a typical baby. He was colicky and allergic, beset from the start by skin rashes and a chronic runny nose. Ethan was also late to the milestones first-time parents anxiously wait for. He smiled at nine weeks, crawled at nine months and walked at 16 months. "The late end of normal," our smiling, bow-tied pediatrician said. But as time passed, the list grew: He had words by two years, but didn't combine them. He didn't point, didn't wave bye-bye, and blinked stupefied at a knot of doting adults clustered around him. Worse still, he seemed happiest playing alone, dribbling sand through his fingers. The more I read, the clearer it was: The Rain Man doctor may have been an oaf, but he wasn't wrong.
While scientists can't say definitively what causes autism -- genetic and environmental factors are both suspected of playing a role -- the incidence of the disorder has seemingly exploded overnight in this country. It's now estimated that 1 in 166 children are diagnosed somewhere along the autistic spectrum -- a rise of about 1,000 percent since 1990. The cause of the increase is a hot topic of debate. Lately, that debate has focused on the possible role of thimerosal, a mercury-containing preservative. Thimerosal was first added to vaccines in the 1930s, but children's exposure to it rose sharply in the early 1990s, when the mandatory vaccine schedule included more shots at an earlier age. (Most, but not all, vaccines given here are now thimerosal-free.) The federal Centers for Disease Control and Prevention and other public health agencies have so far ruled out a vaccine-autism link, but some doctors and many parents believe one exists. More studies are planned.
It's hard for anyone coping with autism not to be drawn into the debate. But for us, agonizing over what may have caused Ethan's autism was far less critical than researching the daunting array of therapies, all bearing the same urgent caveat: The sooner you start, the better the outcome; the more you do now, the further your child will go later in life. With autism, "wait and see" is not an option. And so the battle begins.
Some doctors estimate that up to half of autistic children like Ethan have gastrointestinal problems because they can't digest common proteins found in wheat and dairy. An aggravated, permeable intestine may allow these proteins to seep into the bloodstream and onto the brain, where they have an opiate effect. There are no extensive scientific studies yet to back this theory, but anecdotal evidence is so strong that many parents at least try a gluten- and casein-free diet to see if it will help. In Ethan's case, diet changes have made a big impact on his ability to digest and absorb food, grow properly and function better.
Other therapies we've tried have helped too. At three, Ethan had few words and even fewer play skills, so we started with a modified form of applied behavioral analysis (ABA), a one-on-one approach in which vocabulary, games and compliance are taught by a therapist who breaks down learning into basic components. Words are taught in a simple format without distractions. Three pictures are laid out. "Point to truck," the therapist says. Later, the words get more abstract: "Point to big," or "Point to long." Eventually the child says them himself.
The approach baffles some parents. How can it help a child learn play skills or how to relate to other children? In the end, there are arguments for and against any therapy. The answer, always, is that each child is different. You try what you can and see what works. For Ethan, the ABA format helped his brain start to organize itself. He began to learn how to learn.
Over time, his therapy became more like play sessions that tapped into his great passions: music, instruments, machines. In the frantic push to check off tasks mastered, we didn't want to lose sight of the ultimate goal -- a boy who played with other children, could tell us what he needed, and was interested in more than dribbling sand. We tried many therapies: floor-time play, sensory integration, auditory integration, music therapy. The good news is that these therapies do work, and autism today is far less often a life sentence of withdrawal and self-injury than it was in the past. For Ethan, that's meant an end to long, mysterious crying jags and tantrums that ruled much of his early life. He's happy now, delighted by countless peculiar pleasures, like leaf blowers, motorcycles and Thomas Edison.
Here's the other side of the story: We've fought this battle for nearly seven years, and we haven't -- in all honesty -- won. We don't have a boy anyone would say is a miraculous example of recovery or even of particularly high-functioning autism. When you start down this road, you read about kids who recover enough to enter first grade showing no signs of autism. You dream of one day telling such a story yourself. Is it sad to admit you can't? In truth, less and less so.
All the families I know who wage this war come to a point where they lay down their arms. Sooner or later, battling the disorder starts to feel like battling the child. When your son has enough words to tell you he likes dribbling wood chips because it makes him feel calm, that it's a way for him to sing inside his head, you think, Huh. Okay. Fair enough. When he laughs at the same intersection whenever you go through it, and says, "I don't know, I just love that traffic light," you think, Well, there are worse things to love. He is who he is. Autism is part of it.
You also come to see how autism is a cloud with its own silver lining. Ethan's passions and room-pacing joy at the prospect of a concert, of Halloween, of a stay in a hotel with a pool are so total, it's impossible for those around him not to be infected by it. I know families who plan trips around train rides and planetarium visits, who cover their walls with pictures of the 43 U.S. Presidents or the four Beatles. They do it because their child's interests are so precise, so absolute, that -- while laboring to teach them the skills they need to function in the world -- these parents learn something too: the pure joy of arbitrary passions.
Ethan is ten now, and it takes all of three minutes to spot his differences, in the way he rocks slightly when he's excited, or buzzes in a circle around someone he's just met, repeating the last thing they've said to him ("Hello, Ethan! It's nice to meet you!"). He attends a regular public school, with the help of an aide, and has friends, though those he loves most are Daryl and Stu, the custodians who let him help with vacuuming, and "Mama," the dishwasher who lets him scrape trays after lunch. He loves these people because they're kind, gentle souls and also, I think, because they work with interesting machines. Waging this battle has taught us to be grateful for all these people and the small but immeasurable acts of kindness we witness daily. It's also taught us to celebrate modest victories, to see and count the smallest blessings, and to adopt a new perspective on defining success for all of our children.
Overall a prety positive article, although there is some suport of "touchy" therapies, they seem to have the jist of autisms true meaning.
BOY WONDER
Once we stoped trying to "fix"our autistic son, we started to appreciate the world as he saw it.
It was a moment I'd been dreading, and still, it managed to take me by surprise. When Ethan, the oldest of our three sons, was diagnosed with PDD-NOS, at first it sounded almost as though the neurologist, who had a few missing social skills himself, was speaking a foreign language. Then I realized that he was using a clinical term: "Do you mean autism?" I said, staring at the three-year-old boy I'd spent the whole morning prepping for this trip to the doctor's office: making sure he was well-rested, well-fed, boned up on his limited vocabulary -- all to escape this exact, life-ending diagnosis.
"That's it!" the doctor said excitedly. "PDD means he hasn't got every trait of classic autism, but it's still very serious. Basically you'll hope he can one day write a check, hold a simple job, things like this."
It took all my concentration not to cry in front of this man. I asked if there were any books he could recommend.
He thought for a while, as if he'd never heard the question before. Finally he said, "Rain Man is a good movie. Have you ever seen that one?"
Ethan was never a typical baby. He was colicky and allergic, beset from the start by skin rashes and a chronic runny nose. Ethan was also late to the milestones first-time parents anxiously wait for. He smiled at nine weeks, crawled at nine months and walked at 16 months. "The late end of normal," our smiling, bow-tied pediatrician said. But as time passed, the list grew: He had words by two years, but didn't combine them. He didn't point, didn't wave bye-bye, and blinked stupefied at a knot of doting adults clustered around him. Worse still, he seemed happiest playing alone, dribbling sand through his fingers. The more I read, the clearer it was: The Rain Man doctor may have been an oaf, but he wasn't wrong.
While scientists can't say definitively what causes autism -- genetic and environmental factors are both suspected of playing a role -- the incidence of the disorder has seemingly exploded overnight in this country. It's now estimated that 1 in 166 children are diagnosed somewhere along the autistic spectrum -- a rise of about 1,000 percent since 1990. The cause of the increase is a hot topic of debate. Lately, that debate has focused on the possible role of thimerosal, a mercury-containing preservative. Thimerosal was first added to vaccines in the 1930s, but children's exposure to it rose sharply in the early 1990s, when the mandatory vaccine schedule included more shots at an earlier age. (Most, but not all, vaccines given here are now thimerosal-free.) The federal Centers for Disease Control and Prevention and other public health agencies have so far ruled out a vaccine-autism link, but some doctors and many parents believe one exists. More studies are planned.
It's hard for anyone coping with autism not to be drawn into the debate. But for us, agonizing over what may have caused Ethan's autism was far less critical than researching the daunting array of therapies, all bearing the same urgent caveat: The sooner you start, the better the outcome; the more you do now, the further your child will go later in life. With autism, "wait and see" is not an option. And so the battle begins.
Some doctors estimate that up to half of autistic children like Ethan have gastrointestinal problems because they can't digest common proteins found in wheat and dairy. An aggravated, permeable intestine may allow these proteins to seep into the bloodstream and onto the brain, where they have an opiate effect. There are no extensive scientific studies yet to back this theory, but anecdotal evidence is so strong that many parents at least try a gluten- and casein-free diet to see if it will help. In Ethan's case, diet changes have made a big impact on his ability to digest and absorb food, grow properly and function better.
Other therapies we've tried have helped too. At three, Ethan had few words and even fewer play skills, so we started with a modified form of applied behavioral analysis (ABA), a one-on-one approach in which vocabulary, games and compliance are taught by a therapist who breaks down learning into basic components. Words are taught in a simple format without distractions. Three pictures are laid out. "Point to truck," the therapist says. Later, the words get more abstract: "Point to big," or "Point to long." Eventually the child says them himself.
The approach baffles some parents. How can it help a child learn play skills or how to relate to other children? In the end, there are arguments for and against any therapy. The answer, always, is that each child is different. You try what you can and see what works. For Ethan, the ABA format helped his brain start to organize itself. He began to learn how to learn.
Over time, his therapy became more like play sessions that tapped into his great passions: music, instruments, machines. In the frantic push to check off tasks mastered, we didn't want to lose sight of the ultimate goal -- a boy who played with other children, could tell us what he needed, and was interested in more than dribbling sand. We tried many therapies: floor-time play, sensory integration, auditory integration, music therapy. The good news is that these therapies do work, and autism today is far less often a life sentence of withdrawal and self-injury than it was in the past. For Ethan, that's meant an end to long, mysterious crying jags and tantrums that ruled much of his early life. He's happy now, delighted by countless peculiar pleasures, like leaf blowers, motorcycles and Thomas Edison.
Here's the other side of the story: We've fought this battle for nearly seven years, and we haven't -- in all honesty -- won. We don't have a boy anyone would say is a miraculous example of recovery or even of particularly high-functioning autism. When you start down this road, you read about kids who recover enough to enter first grade showing no signs of autism. You dream of one day telling such a story yourself. Is it sad to admit you can't? In truth, less and less so.
All the families I know who wage this war come to a point where they lay down their arms. Sooner or later, battling the disorder starts to feel like battling the child. When your son has enough words to tell you he likes dribbling wood chips because it makes him feel calm, that it's a way for him to sing inside his head, you think, Huh. Okay. Fair enough. When he laughs at the same intersection whenever you go through it, and says, "I don't know, I just love that traffic light," you think, Well, there are worse things to love. He is who he is. Autism is part of it.
You also come to see how autism is a cloud with its own silver lining. Ethan's passions and room-pacing joy at the prospect of a concert, of Halloween, of a stay in a hotel with a pool are so total, it's impossible for those around him not to be infected by it. I know families who plan trips around train rides and planetarium visits, who cover their walls with pictures of the 43 U.S. Presidents or the four Beatles. They do it because their child's interests are so precise, so absolute, that -- while laboring to teach them the skills they need to function in the world -- these parents learn something too: the pure joy of arbitrary passions.
Ethan is ten now, and it takes all of three minutes to spot his differences, in the way he rocks slightly when he's excited, or buzzes in a circle around someone he's just met, repeating the last thing they've said to him ("Hello, Ethan! It's nice to meet you!"). He attends a regular public school, with the help of an aide, and has friends, though those he loves most are Daryl and Stu, the custodians who let him help with vacuuming, and "Mama," the dishwasher who lets him scrape trays after lunch. He loves these people because they're kind, gentle souls and also, I think, because they work with interesting machines. Waging this battle has taught us to be grateful for all these people and the small but immeasurable acts of kindness we witness daily. It's also taught us to celebrate modest victories, to see and count the smallest blessings, and to adopt a new perspective on defining success for all of our children.
Overall a prety positive article, although there is some suport of "touchy" therapies, they seem to have the jist of autisms true meaning.