Safe Minded Mom is happy

Living with autism

Catherine Lutz - Aspen Daily News Staff Writer


Sat 06/30/2007 10:01PM MST

Like most teenagers in the Roaring Fork Valley, Bill Bernard is athletic -- an avid hiker, mountain biker and kneeboarder who takes full advantage of the recreational opportunities offered here.

But unlike most of his fellow Aspen High School graduates, the 19-year-old is continuing classes at the school, and has a support group working with him every day to help find him a trade.

Much of what Bill does seems like normal teenage activity, but if you look more carefully, there's something different. One of Bill's favorite things to do is swing in a hammock in the backyard. The repetitive motion calms him, and he'll sometimes read a book or recite song lyrics or a movie script -- in its entirety from memory -- while swinging. He can also tell you all about fruit bats, his favorite pirate is Captain Hook, and he is a stickler for order -- walking through a room he will close all doors and arrange chairs until they're perfect.

Bill has what's commonly known as autism -- more specifically, he has an autism spectral disorder. People with these disorders have developmental disabilities that range from mild to severe, which is why someone with ASD is often referred to as being "on the spectrum." Every person with ASD is unique in his or her level of disability, but the disorder is characterized by impairments in social skills, play activities and communication. An autistic person does not look any different, and is usually as physically capable -- if not more so -- than anyone else. It's the result of a neurological disorder in which, as one person put it, the "long-distance connections" between various parts of the brain that control things like emotion, memory and other skills developed normally through time are "broken."

ON THE RISE
Bill was born in 1987 in New Jersey, the state with the highest rate of ASD in the country -- one in 100 children are diagnosed there. Many people believe that rates of autism rose dramatically with children born in the '80s and '90s -- although no definitive study had ever been done until a few years ago. Now there's much debate over whether autism is more prevalent, or if the identification and classification of autism spectral disorders is simply becoming broader as it becomes more understood.

...

Numbers are on the rise in the Roaring Fork Valley as well, although again, there are no definitive statistics from the past to compare. Seven kids significantly enough impacted by autism are receiving services in the Aspen School District, according to Superintendent Diana Sirko -- more than a few years ago but it's uncertain by how many, she said.

An estimated 30-40 students in the schools from Aspen to Parachute are in special programs for autistic children, said Troy Lange, special education director for the Mountain Board of Cooperative Educational Services, which works with 10 central Colorado school districts on special education programs and services. That's a fivefold increase from just five years ago, he said, although "I do think we're catching up with better identification and better understanding of the needs of kids, and that's why it seems like there's more cases."

Because autism is only emerging from the scientific shadows even as more and more families are dealing with it, school districts, social services administrators and professionals working in the field are in the process of learning as well. When the Bernard family moved to Aspen five years ago, Bill was the only person they knew in the high school to have autism. An autistic senior in Basalt High School this upcoming year is the first to have gone through the Basalt school system.

...

The good news is, "because there's more interest and information out there about autism, it creates more advocacy and money being spent on research, signs and trying to understand the genetics of autism," said Osaki. "If we get to the core we can develop programs that develop peak skills. And a deepening understanding (by the general public) will help."

A DAY IN THE LIFE
Bill graduated with his class last year, but is entitled by federal law to continue with his education until he's 21. This summer, he is participating in the Extreme Sports Camp for kids with autism (which his mother Sallie co-founded and where his brothers Fred and Jamie are counselors) -- a local program in its seventh year that emphasizes recreational activity. Bill also has two full-time aides -- called paraprofessionals -- who spend days with him studying, doing sports and working on his transition into a working life.

...

In his last year at school, part of the emphasis was on job testing. So Bill was given the task of setting up the lunchroom, and they found that something like straightening and stacking chairs was something he both enjoyed and that centered him.

Everything Bill is working on these days is focused on this transition into a typical adult working life with some measure of independence. He and Vince and Amanda Christian -- a classmate of Bill's who is his other summer aide -- work on learning and life skills five days a week. In the mornings, they typically hang out at the Bernard home, reading, writing, and doing chores and exercises like working on his daily journal. The idea is to have him focus on and complete a task -- something that may not be more work than with some teenagers but takes more methodical instruction.

"It's making lists," explained Vince. "All these things we take for granted we have to back up a couple of steps and understand the pre-requisites."

In the afternoons, they have started visiting various local organizations that allow him to come in and work. One day it might be going to the Aspen Center for Environmental Studies and pulling weeds. On Tuesdays, they typically visit the Aspen/Pitkin County Animal Shelter, where Bill will walk a dog and give the animals water, for example.

"It's Bill learning how to do a task, complete a task and have a supervisor," said his mom, Sallie Bernard. "It's less important what that job is."

One of the family's ideas is that maybe Bill could get a job at the Snowmass Conference Center, where he can put his organizational skills to work by setting rooms up for conferences. The whole team is now working towards seeing what clicks with him -- and making sure that he can work towards being successful at whatever he does.

Unlike many autistic people, Bill's communication skills are "phenomenal, as long as it's something he wants to talk about," according to Vince.

But Bill also struggles with anxiety and self-absorption; he sometimes panics or has a hard time focusing on what he's supposed to do, Sallie explained. And unlike other people who may either naturally get past or even repress those typical kinds of challenges, Bill needs some coaching to learn how to deal with them.

"Kids with autism are perfectionists, so when something isn't perfect and they can't figure out how to express it ..." said Vince, "they're usually frustrated with themselves."

Honing decision-making skills and getting past the tough times is hard work, but it does pay off for Bill in new skills, confidence and energy, and every day furnishes a new success.

"Bill is in a groove right now," his mom said. "We're very happy."

MOVING FORWARD
Awareness of autism and progress on helping the thousands of children afflicted by it is definitely progressing in the right direction. A federal bill authorizing nearly $1 billion to combat autism through research, screening, early detection and early intervention was passed late last year, and just recently the funding was appropriated. Politicians like Sen. Arlen Specter and Rep. Diana DeGette have
championed autism funding and research.

...

Seeing things grow from the ground up is good, said Sallie Bernard.

"I think it's been a positive," she said, explaining that in New Jersey, autistic kids had their own schools with a one-size-fits-all program that didn't allow kids as much individual attention as they needed and kept them segregated from other kids. "Coming here they had nothing. And it was sort of good because everyone's open. People are less judgmental and have an open attitude."

lutz@aspendailynews.com

Editor's note: This is the first in an occasional series of articles about children and young people living in the Roaring Fork Valley with autism. The next article will appear later this week.

(Emphasis added.)

Watching billionaire Sallie Bernard grind the word "autism" into the words "mercury poisoned" with a heel of her Gucci loafered foot until the two separate conditions have become one in the fevered minds of many parents has not been a "good" experience for those of us who are fond of rationality and science and ethics. Many of us who don't have the inclination, or the spare hundreds of thousands of dollars, to hire PR firms and phony investigative "reporters" to propagate our views onto an unsuspecting public, have been watching in shock and dismay the efforts of Sallie and friends to terrify the planet into believing that thimerosal in vaccines caused a "generation of kids" to be "pushed over the edge into the Hell that is autism" (Kirby, 2005). Ever since she put her name on, "Autism: a novel form of mercury poisoning" and paid Medical Hypotheses to publish that amateurish, hysteria driven hype-othesis some of us have been reeling with every thought of the hubris of Sallie Bernard and gang.

Sallie Bernard was one of the founders of Coalition for SAFE MINDS, then she became president of Cure Autism Now, ensuring that CAN would fund some thimerosal studies (which they have, but for some reason they don't get much play) and now Sallie dear is on board at Autism Speaks.

For someone who has been at the helm of a few autism mercury/biomed/cure organizations, presumably with her finger on the pulse of every new finding in autism treatments, and who has not been short on cash since even before her before her triplets were born prematurely, isn't it amazing that her son Bill is still autistic? What does that say about the likelihood of anyone being able to CURE their kid of autism NOW or ever? How many people bought her Autism=Mercury Poisoning hypothesis? How many people bought her friends' hype over the supposed great curing value of chelation? How many people have been frightened off of vaccines because of things Sallie wrote on the Autism-Mercury Yahoo! Group? How many people were swayed into believing vaccines can cause autism by her appearance on video on Erik Nanstiel's "FAIR autism media" site. How much of her influence was behind getting Dr. Robert Hendren hired as the director of the MIND Institute?

This woman made a bit of her billlions off of BIG PHARMA. On her corporation's website it says her firm includes "pharmacies" among the types of clients they have worked with. The website lists Merck specifically as a client, one wonders if Merck is what they meant by "pharmacy". It might seem a little petty to point this out, but considering how many times Autism Diva has been falsely accused of taking money from "Big Pharma," the fact that queen mercury mom Sallie Bernard actually has taken money from Big Pharma is just a little beyond ironic.

Thanks in part to Sallie Bernard a generation of kids are seen as walking iatrogenically diseased waste dumps, "toxic train wrecks" with ruined bodies badly in need of chelation and myriad other whacked-out quack therapies. But she's happy to be in Aspen where people are "open" and "less judgmental." Guess what, Sallie dear? There are actual, real life, breathing kids out there who judge themselves every day as "poisoned" when they are NOT.

Thanks, Sallie. Thanks loads. We all hope you continue to live your happy little life there in Colorado with your happy non-judgmental neighbors.

Best wishes to your son, of course, but consider yourself judged as scientifically-uninformed, appallingly self-centered and a danger to public health by an unhappy neighbor over here in upstate California.


Autism Diva
Tace atque abi