Tuesday, July 22, 2008

New Depths of Idiocy

Okay, I am finally peeved enough about Michael Savage's inane rants about autism over the past few days to invest a few moments' time in writing about it. The fact that this has been discussed exhaustively elsewhere bears no inhibiting influence on my need to write about it - I need to get this off my chest and move on.

Perhaps I have been slower to react to this due to the fact that I have listened to Michael Savage's talk show over the years. I have a lengthy drive home, and for the sake of diversity I often change up the listening material I garner from the radio. Someday I hope to be able to afford these products and therefore to while away the car time in a state of continuing-education bliss. In the meantime, I have spent too many hours listening to the likes of this blowhard.

So when I initially heard about the controversial statements he had made, I said to myself, "Self, this is no big deal. Savage insults somebody at this level of magnitude virtually every day. Its his shtick, nobody will pay attention to this garbage. Plus, if you put virtually anyone in front of a microphone for three hours a day, every day, foot will insert into mouth at some point."
Self was wrong. When Savage went on his little diatribe about autism diagnoses being a fraud, a play for the welfare of the state, the autism community and the greater disability community came unglued. Deservedly so.

So, Michael Savage went into damage control mode. Or at least his deranged little version of damage control, which reeks of conspiracy theory, paranoia, and a complete lack of respect or understanding of autistic people and those who love them. I maintain that Ben Stiller is a modern-day comic icon due to his ability to play roles that just make us cringe to watch. Witnessing Savage's self-inflicted, ego-driven tailspin was every bit as cringe-producing as anything Stiller has acted out on camera.

Though I missed the Talk Show Tour de Farce that occurred last night as a means to defuse the situation, I did tune in to The Savage Nation for the last time today to hear this guy sputter his way through what is hopefully his Swan Song as a radio personality. I was utterly fascinated to hear him spin his web of obfuscation and red herrings as a means of deflecting attention from the ugly truth of his bigotry on this topic. Here is how the reasoning goes:

Michael Savage believes that the APA, the AAP, and Big Pharma all conspired to have the diagnostic criteria broadened in the 90's. This was done in an effort to promote the sale of more SSRI's (anti-depressants, anti-anxiety).
Pediatricians are envious of other doctors, such as plastic surgeons, due to the disparity in income (does anyone see echoes of anti-vax sentiment in these statements, hmmm?). "They", meaning the AAP, therefore conspired with drug makers to invent this new Dx so that both groups could increase their revenue and profit margins. (Apparently Savage is not aware that pediatricians are not involved directly in the diagnosis of, or treatment of, autism).
Parents are vacuous, drooling, knuckle-dragging, self-centered morons who buy this line from the aforementioned triumvirate and submit their kids to a parade of narcotics in the name of controlling their behavior. These same parents take no responsibility for the behaviors of the kids they brought into the world, allowing them to scream and carry on. Nothing a good beatin' wouldn't solve, right Dr. Savage?
Do you get the picture he is painting? As I listened today, he had the gall to say (and I am paraphrasing - this is not a direct quote):
"You should be lauding me as a hero, not reviling me - for bringing this subject to your attention. I am the defender of the defenseless!"
Can you believe this guy? He actually discounts an entire category of people, is excoriated for it in the national media, then tries to recast himself as some sort of martyr who only has the kids' best interests in mind!

Most readers of this blog (all 17 of you) have the critical thinking skills to know a Purveyor of Woo when you see one, right? Well, as further example of Michael Savage's debased version of critical thinking skills, let's just examine a few of the "headlines" from MichaelSavage.com, shall we?

The Life-Saver Heart Surgeons Never Tell You About
This 23-cent miracle could save your life!
Billion dollar drug company found a cure for cancer ... and TOLD NO ONE!!!
They hid the cure to sell you more drugs!
(or, perhaps most telling of all...)
Support the Michael Savage Legal Defense Fund
(Donations are not tax deductible)

Does this give you an idea of who we are dealing with, and why I assumed the whole thing would receive no airtime whatsoever? Nobody really takes this guy seriously, or so I thought.
I truly became outraged only today when listening to this bigot (as opposed to observing the commentary on the internet) made me realize that many of his listeners will actually buy into and support this line of crap. Autism is known as "the hidden disability", and its subtle presentation in many people can cause extensive problems in day-to-day interactions. My friend, Bev, is the best I know at capturing this aspect of autism and presenting in a fashion that makes it easy for people like me to understand. She exquisitely and poignantly describes some of the challenges and issues that my son will be facing as life progresses, and thousands of others like him.
Shame on Michael Savage for using his bully pulpit to try to make life more challenging for my son. Shame on him for discounting the struggles of autistic people. Shame on him for ignoring the existence of autistic adults (they're not all little kids, ya know?). Shame on him for scoffing at the need to accommodate and support people with special needs. Shame!

Monday, July 21, 2008

On Support

I just read a great column in the Washington Post by Ann Bauer, and I wanted to share it with you.

Please read the article in its entirety here. You will need to register (free) in order to access the page.

One of my main goals in keeping this blog and participating in online and real-life advocacy efforts is to try to promote the concept of supporting autistic people. I remain immensely dismayed by the overwhelming occupancy of cause and cure issues in the national rhetoric on the topic of autism. It is far too often that autistic adults and those who are transitioning into adulthood are ignored - they are victims of the autism community's unnerving inability to move beyond the vaccine and mercury causation belief systems. These belief systems pigeonhole the range of discussion and seemingly override most other concerns within the community. These belief systems result in a worldview that narrows the definition of "support" to a set of medical interventions sold to parents with still-young children. To put it in a different way, one a friend recently mentioned, the broader autism discussion has been "framed" - the narrative has been set in the public's mind - to imply that all autistics are young children who are the victims of their toxic environment.
One unintended result of this misappropriation of ongoing focus and energy on the vaccine issue is that it inevitable draws resources from known areas of shortfalls. One such area is aiding young adults with their transition into adulthood.

Let me give you a quote from Ms. Bauer's piece:
"My grown son has autism. And while I wouldn't trade him -- the person to whom I gave birth -- for any other, I wish that his disability were as recognizable as Down syndrome and that we, his parents, were more effective at helping him achieve a satisfying life. Right now, we're flummoxed by the issues that arise as a child with autism veers into adulthood: higher education, employment, independent living, romance. In all these areas, family members of those with Down syndrome have figured out a cohesive, workable system of support."
I think Ms. Bauer hit the proverbial nail on the head. I think she has voiced the concerns that parents of adult autistics have been asserting for a long time now. Is this situation improving? I certainly hope so, but obviously not at a pace that has helped Ms. Bauer's son.

Another quote:
"Third -- and most important -- they have carved out a place in society for
their children. It's a hackneyed myth that people with Down syndrome are
uniformly happy, but it is true that they have the capacity for joy and that
their community has ensured they have a breadth of options -- career,
marriage, dignity.

This is what we who love people with autism must do"
Thank you for that, Ms. Bauer.
You see, I have long wondered what happens when the last biomedical treatment
has been tried, and the resignation sets in that autism truly is a lifelong disability.
Or when a child who has been held out in public as being an example of a "cured",
or "recovered", by his or her parents has problems as life's stages unfold. Problems
that he or she is not "supposed" to be having.
Well, hopefully those of us who have been working towards societal acceptance,
who have been shooting holes in the "autism is worse than cancer" mindset, who
have decided that respect and dignity freight more effectively in autistics' lives
than panic and pity, hopefully we will have made enough of a difference in
society that those kids, too, can pursue their individuality in a way that preserves
their happiness and sense of fulfillment.

So how do we go about that? How do we improve services and life transitions for
autistic people? In an interesting parallel, a really good post hit the Autism Hub today
by Joel Smith on that very subject. In it, Joel - an autistic adult himself who has the strength
of experience behind his words - spells out specific areas on which supporters and
educators of autistics can focus for the most positive impact. Please give it a read.

Ann Bauer and her son. Joel Smith and the Autism Hub. My son J. Let's keep writing our
own narrative.

Note: Apologies for the formatting problems with this, and other, posts. Blogger's software is
just abysmal when it comes to basic formatting.

Tuesday, July 8, 2008

The Importance Of ... Postcards

I have written from time to time on the importance of "community". Community takes many forms, and in the autism vernacular is used in many ways, some as cold and unfeeling as a word included in a clinical calibration of goal establishment, such as "subject will spend 45 minutes per day, 5 times per week, in a community-based setting".

Sometimes, when I am applying "real" autism stuff to our little corner of the autism world, I need to get my arms around how terms or circumstances apply in our life - how does something like "community involvement" or any of its variations play out in our family dynamic?

To answer this question, I will use a minor occurrence from last Tuesday. You see, last Tuesday J received two postcards in the mail. Ask yourself the last time you received two postcards the same day! Heck, when is the last time you received one postcard?

The first postcard is from J's kindergarten teacher. Now, please be aware that Jason is done with Kindergarten. He graduated. Just ask anyone who lives around here, and they know, since J told everyone he saw - very loudly and at the expense of any other greeting, "I graduated Kindergarten!" - for the last 3 weeks.
The teacher, Mrs. D'Nealian, was simply one of the most perfect people that could have come into J's life at the time she did. Mrs. D'Nealian runs a tight classroom, with lots of rules. Mrs. D'Nealian has all of her rules in writing, at eye level, all over the classroom. Mrs. D'Nealian uses very concrete ways to help young learners identify good and bad behaviors (such as the "VIP" chair), Mrs. D.Nealian welcomes parents to be involved in the classroom, and also welcomed a full-time aide for one of her students (that would be J). For perhaps the greatest example of the type of things that occur in Mrs. D'Nealian's classroom, read The Best Story Ever!. Here is the back of Mrs. D'Nealian's postcard to J, probably written on a plane somewhere between here and Chicago:
(Postcard has been cropped to protect personal information. It is signed, "Love, Mrs. D'Nealian")
Is it just me who is struck by the importance of this type of small, simple action on the part of this teacher? Please keep in mind that Mrs. D'Nealian has never had an autistic student before. She is a general ed. teacher, and J had a mainstream placement for Kindergarten.

And, truth be told, Mrs. D'Nealian is one of a long line of perfect people who have entered our lives as a result of being part of J's "community". Some examples:
J's first therapist just sent us pictures of her new baby, still in touch after moving away two years ago.
J's second therapist had both of my sons walk down the aisle in her wedding. That was the day that J took a bite out of the wedding cake. The bride's response? She laughed the loudest of anyone.
J's third therapist is a lasting friend, and even gave our other son, T, his first fish (named Tony).
J's fourth therapist is also a lasting friend, and is the source of one of our great dogs, Marley (hey, there seems to be a pattern developing here.)
J's fifth (and last) therapist weathered some storms of defiance from a newly assertive J with a stiff upper lip, and still took the time to come see the Autism Hub presentation in January.
J still gets mopey from time to time and mentions that he misses N, his former SLT.
J's Special Ed Coordinator at school has proven to have his best interests in mind, and even took it upon herself to start a district-based Autism Parents group for the purpose of sharing information and putting together some simple social activities for our kids (such as an Easter Egg hunt).
J has had some wonderful aides at school, who have been by his side through much of his period of positive development over the last two years of his full inclusion at school.
J's therapeutic horsemanship teacher has also become his swim instructor, and she and her sister are also housesitters for us now. She also is working in the same capacity with Baby C now (Yikes! Don't ask about that yet).
I know I am forgetting some people here, there have been so many that have been a positive force in our family's life.

They don't tell you this stuff at the time of diagnosis, do they? They don't tell you all of the good things that come along with the challenges and difficulties. Maybe they should. It is my understanding that some parents of children born with Down Syndrome are given a "Congratulations" gift bag on the birth of their child. How would autistic children benefit if the same were to happen with our kids?

Of course, I mentioned at the beginning of this post that J received two postcards that day, and leaving out mention of the second would be a travesty. You see, J's Grandma and Poppa have been the most impactful on J's life of anyone. From simply accepting him for who he is and all the foibles that come along with him, to dedicating themselves to taking both older boys on a surprise "adventure" every Saturday that they are in town (they are part-time residents of our area), to the big trip coming up in a couple of weeks. Grandma and Poppa are taking our two older boys to Colorado, without Mom and Dad! Its a big adventure!
Grandma and Poppa know J and T are nervous about their biggest adventure of all. Grandma and Poppa know that J loves trains, and that he will be excited to see one in Breckenridge. Grandma and Poppa know J responds well to things that are written down and is able to reference images easily. Grandma and Poppa are perfect grandparents for J and T.