Team Spellbound prepares for the 2011 Walk Now for Autism Speaks event in St. Louis
We're gearing up for this year's fundraising drive for autism research. Help kids like my son Eric to live full and fruitful lives while we research treatments for this affliction. The St. Louis walk is on October 15, 2011, and our goal this year is $500. Please, consider donating $25 or more on Team Spellbound's donor page. If you live close to the St. Louis area and you would like to participate in the walk, e-mail David V at david@purplenote.com.
Everyone who donates $40 or more will be entered into a random drawing to win one of two gently used copies of the famously rare theremin recording, Theremin Noir, released in 2000 on now defunct November Music. Featuring Rob Schwimmer on theremin, Uri Caine in violin, and Mark Feldman on piano! As heard on Spellbound over the years, this incredible performance liberally swerves between jazz, classical, and avant-garde and is one of the true gems of the theremin repertoire.
Spellbound's official charity is the Walk Now for Autism Speaks
What is it?
Autism is a neurological brain condition that inhibits a person's ability to communicate and process sensory input. Its victims, usually diagnosed around age 2, are unable to lead normal, self-sufficient lives and are usually fated to assisted living facilities for their whole lives. Although autism has existed for as long as people have, and first formally identified in the 1940s, the condition only came to the public's consciousness after the release of the motion picture Rain Man in 1989, where Dustin Hoffman played an autistic adult in a role that won him an Academy Award.
Since then, societies have begun paying attention to autistic people and identified other similar conditions, now to the point that autism spectrum disorders have passed Down's Syndrome as the leading developmental disorder in children in most countries. Estimates are exceedingly difficult because of changes in record keeping and symptom diagnosis, but the most realistic number is that 1 in 250 people have an autism spectrum disorder, and 1 in 3000 have severe enough conditions to eliminate the likelihood of self-sufficiency in their lives.
Autism isn't a disease or disorder, but a syndrome (a collection of symptoms) that covers a wide range of conditions. Classical, or core, autism is rather rare, and most sufferers never learn to speak. Many have severe issues with sensory input and are profoundly disturbed by loud sounds, bright light, and rough clothing. The character of Raymond Babbitt in Rain Man depicted a person on the upper end of this portion of the spectrum.
On the other end of the spectrum, people with Asperger's Syndrome or Hyperlexia may not be diagnosed at all, but may stumble through childhood as awkward, socially delayed loners and grow up to be eccentric, but usually independent, adults. They benefit most from early intervention and therapy, especially regarding social skills. Several famous people in history are suspected of having the symptom's of Asperger's Syndrome, including Albert Einstein and Isaac Newton.
Debates rage viciously over autism's supposed causes. The bottom line is we don't know why it occurs, although we know it is sex-linked (4 out of 5 autistic children are boys) and has a large genetic component (siblings have a 1 in 4 chance of being autistic as well). We also suspect that autism is, in fact, a group of similar appearing but pathologically unrelated conditions with a myriad of causes, which may be why so many myths and urban legends surround its supposed cause, how effectively it can be treated, and whether or not cures exist. The most reliable scientific studies demonstrate no correlation with any specific external cause, and most people with autistic symptoms do not respond to medical treatments of any sort.
Why do I care?
My son, Eric, was diagnosed with Pervasive Developmental Disorder, in the middle of the autistic spectrum, in 2003. Needless to say, it shook our family to its foundation and forced us to revise many hopes and dreams we had for him for the future. Eric can occasionally be overheard on the program, usually asking me some embarassing question in the middle of a voiceover. :-) Eric is a charming 10-year-old who has a measure of warmth and affection that many autistic children lack. Eric can speak, although most of his speech is stereotypical (he repeats memorized phrases to communicate) and his ability to create spontaneous speech, express his feelings and answer "why" questions is severely limited.
Eric gets good care from our public school, the Fox C-6 School District in Arnold, MO, but they are the exception to the rule -- most public school care for autistic children is mediocre to poor because older methods of special education do not tend to benefit autistic children. Most parents must dig deep into their pockets to pay for the extensive speech and sensory therapy that autistic children require.
Who are they?
Although I actually prefer the Autism Society of America, for their impartial and open-hearted approach to advocacy, I appreciate Autism Speaks for their national Walk Now events. Originally "Walk Far for NAAR" (the National Association for Autism Research), NAAR merged with several other organizations a couple years ago. I'll admit, I wasn't fond of it...some of the organizations NAAR merged with are suspect in my book, such as Cure Autism Now and the original Autism Speaks organization, continuing to preach the mercury and vaccines myths and promoting treatments that are unproven, and some high profile people have quit Autism Speaks's board over their insistence in plunging more money into vaccine research. Still, they do fund good work to support families, and these Walks are the most public demonstration of support presently existing. So, if not Autism Speaks, then donate to the ASA.
And think of Eric when you do. :-)
