This post will be longer than usual, but we’re dealing with some time-sensitive issues and events so please bear with me and settle in for a while or come back soon when you can devote a little more time.
Most people who know The Masked Blogger in my everyday life know that my grandson is affected by Autism Spectrum Disorder. It’s termed “Spectrum” because their are many, many levels of severity, ranging from the “low” end typified by Asperger’s Syndrome to the “high” end which is usually an almost total turning inward of the individual, resulting in very little interaction beyond the basics with the “outside” world. In between are several different levels. That is just a layman’s overview of the disorder; for a more exact definition you should check out sites such as the National Institute of Mental Health (NIMH), the Autism Society of America, the Center for the Study of Autism and Autism Resources. Current observations express a possible diagnosis of Asperger’s Syndrome in my grandson, but we will have to wait another year or two for a more precise diagnosis.
I don’t think I’ve ever written about Autism or of its connection to The Masked Blogger in any of my blogs because Blog Princess expresses a much greater knowledge of its effects and brings with her an everyday experience with it that I could never adequately express. She doesn’t like for anyone to paint her as a great parent for simply doing what any loving parent would do; the very best that they could for their child. I understand that. But as I said to Blog Girl today, being a good parent is in and of itself difficult when all things are equal. Throw in the exceptional challenges that Autism brings and that difficulty factor is multiplied exponentially. Blog Princess and my son-in-law consistently rise to that challenge and more often than not they overcome or deal with the difficulty in an exemplary fashion.
It’s funny. I always wanted to be her hero, but in the last 5 years she has become mine.
Autism Spectrum Disorder currently affects every 1 in every 166 children in the United States alone. Efforts to identify the causative factors are taking place on several fronts. Is it environmental, genetic, chemical, hormonal or caused by certain vaccinations, diet or other agents as yet unknown? There are a lot of possibilities, but as yet no one has been able to say with any certainty, “This is the definite cause of Autism Spectrum Disorder”. The obvious course of action is to continue to increase research and testing, but that costs money. I want to take a few moments to address 2 aspects of that need. One is the giving aspect, one is the taking aspect.
Tomorrow (Sunday) night the Comedy Channel will hold its first live, on-air and online special event, Night of Too Many Stars: An Overbooked Benefit for Autism Education. This event will be held at New York City’s Beacon Theatre beginning at 8pm EST and will feature top comedians and performers. One of the funniest show hosts ever, Jon Stewart, will be hosting. Here’s a lineup of the comedians and performers who will be appearing:
Will Arnett
Jack Black
Steve Carell
Kristin Chenoweth
Stephen Colbert
Elvis Costello
Jimmy Fallon
Will Ferrell
Will Forte
Fred Armisen
Ricky Gervais
Norm Macdonald
Christopher Meloni
Moby
Oscar Nunez
Mike Myers
Bob Odenkirk & David Cross
Amy Poehler
Paul Rudd
Borat Sagdiyev
Adam Sandler
Amy Sedaris
Martin Short
Tony Sirico
Ben Stiller
Triumph the Insult Comic Dog
Brian Williams
I imagine that during the course of the show there will be an opportunity to donate to the efforts to raise more money for research, testing and education. That’s the giving aspect I mentioned earlier.
The taking aspect comes from, of all places (surprise, surprise) a U.S. congressman.
Last Sunday I was watching This Week with George Stephanopoulos when they ran a clip of actress Patricia Heaton (Everybody Loves Raymond) asking people to contact Texas congressman Joe Barton regarding the use of his position as Chairman of the House Energy and Commerce Committee to hold up the Combatting Autism Act 2006 that has been already been unanimously approved by the U.S. Senate back on August 3rd.
Here are some high points of the CAA 2006 bill:
* Allocates approximately $900 million in spending on autism over the
next five years. This is approximately double what would have been
spent with straight-line continuation of existing programs.
* Authorizes a 50% increase in spending for biomedical research in autism
from the $100 million which the NIH currently claims to be spending.
* Creates a legal requirement for Centers of Excellence in Environmental
Health and Autism, to research “a broad array of environmental factors
that may have a possible role in autism spectrum disorders.” These
Centers are authorized with funding of $45 million over the five-year
life of the bill.
* Requires the director of NIH to develop and implement a strategic plan
for autism research and a budget to fund this plan, taking into account
recommendations of a public/private committee (the Interagency Autism
Coordinating Committee) which it requires to include at least one-third
public members, including a person with autism and a person who is the
parent of a child with autism. This new authority and accountability
makes the director, in effect, the “autism czar.”
* Provides grant programs for states to develop autism screening, early
diagnosis and intervention programs for children — perhaps the most
important thing that could happen, short of a cure.
The CAA 2006 bill has already been co-sponsored by a multitude of representatives in the House and already has a majority of representatives ready to approve it once it is brought to the floor for a vote. However, the bill must first pass through the House Energy and Commerce Committee and Chairman Barton has stated to CNN that he will not consider the CAA 2006 until and unless the Senate passes his NIH Reform bill (watch this first part of a 3 part video, then click on the links to the other 2 parts). He is, in effect, holding the CAA 2006 bill hostage until his own bill is passed over in the Senate. What a totally selfish, self-serving act by a man who was elected to represent people! Chairman Barton is one of those Republicans who, as Barney Frank said, believes in a right to life that begins at conception and ends at birth.
I don’t have any argument with Chairman Barton’s own NIH bill and there is a need to move the larger NIH reform bill, but autism needs special attention and funding that is not handled in the Chairman’s bill. You have to wonder at the morals and ethics of a man who would deny our children the assistance they need for his own ego. On his website Barton tries to say his NIH bill must come first so that politics are removed from the process, yet he himself is politicizing the issue with his unreasonable demand.
If you’re so inclined, might I suggest a call, e-mail or fax to Joe Barton’s office, Speaker Hastert’s office or Majority Leader John Boehner’s office demanding that the CAA 2006 bill be released to the floor for a vote. I generally tend to think that politicians will ignore comments by non-constituents, but in this case a groundswell of indignation from across the country might just move these men to do what is right for a change. It can’t hurt to try. You might also contact your own representative (if he or she is Republican) and urge them to make the same calls to the men above and to prove it, expressing that if your representative can’t support children and families affected by autism then you won’t be able to support them in the next election.
Watch the Night of Too Many Stars: An Overbooked Benefit for Autism Education tomorrow night if you’re able and contact the politicians noted above if you’re so inclined. More Comedy and less of a certain Congressman. An autistic child or a family affected by autism will thank you. And I thank you.