Ms Dachel Please Keep Your Opinions Out of My Backyard

Am I gettin' sensitized to dis stuff, or is this lady steppin' on MY turf, tellin' the government in MY state how to spend OUR money??? I'm puttin' on my JERSEY voice for dis witch, I'll be moa' civil-like below:

From the Independent, a local weekly newspaper in Northern Monmouth Co NJ...a letter to the editor:

We'll pay a terrible price for failure to address autism

I read Dan Newman's Feb. 21 report "Assembly bills aim to better autism awareness," and I'm honestly stunned by information provided. Mr. Newman tells us that the CDC has found "New Jersey to have the nation's highest reported rate of autism, in one out of every 94 children, whereas the national rate is one out of every 150 people." First of all, let me correct something in this story. The national rate is one out of every 150 children. There isn't a single study that has been able to find the one in 150 adults with autism. Any adult reading this is aware of children with autism, but they'd be hard-put to name even one autistic adult they know.

Nowhere in Mr. Newman's story do I get the sense that this is a health care emergency. He tells us that "Assembly Speaker Joseph J. Roberts Jr. recently announced his work on a seven-bill package designed to improve detection, treatment and awareness of autism in New Jersey." Detection? Treatment? Awareness? With a rate in New Jersey of one in every 94 children - including one in every 60 boys - it sounds like they're pretty good at detection. People must also be very aware of the numbers after the publicity New Jersey has gotten lately. As far as treatment, with the skyrocketing numbers, it's hard to imagine where anyone will find money for treatment.

This seems a strange way to address an epidemic. Where is Roberts' concern for the cause? Anything that affects so many children should be seen as an emergency. We need to stop it from happening to more children.

Remember polio? At the height of the polio epidemic in the 1950s, the disease affected one in 3,000 Americans. Polio was a health-care crisis. A massive effort was made to address it. Not so with autism. The U.S. Centers for Disease Control (CDC) - which gave us the new rate - still can't decide if this represents an actual increase in children with autism.

The CDC gets billions of taxpayer dollars each year to run health care, and they've been counting children with autism for over 10 years. They still don't know if all the autistic kids everywhere mean that there are more children who actually have autism. Officials merely repeat the old claim that autism isn't more common; doctors are better at diagnosing it and the CDC is now better at counting kids with autism.

Others are making the illogical claim that the new 1-in-150 rate proves that the rate hasn't changed since the 1980s. In The New York Times, "Study Puts Rate of Autism at 1 in 150 U.S. Children," Dr. Fred R. Volkmar, from Yale University School of Medicine, is quoted as saying, "It appears that the rates are unchanged over the past 20 years or so." In the Atlanta Journal Constitution article "Are Autism Cases on the Rise in US?," child psychiatrist Dr. Bradley Peterson tells us that "the numbers are comparable to what they were 20 years ago." The press never seems to demand that officials prove that autism hasn't increased. All we seem to hear about are autistic kids. Where are all the autistic adults who were missed in the past?

Show us the autistic kids from the 1980s who are now the autistic adults in their 20s and 30s at the same rate as children today. Where are the 40-, 50- and 60-year-olds with autism at a rate of one in 150? What are they doing? Lots and lots of parents desperate about the future for their autistic children would like to know. News sources never give us the proof and neither does the CDC.

Regardless of how many times we see the false claim that autism isn't increasing, no one can explain the numbers, and within the next five to 10 years these kids will begin to age out into the adult population. Imagine what it will be like when one in every 150 18-year-olds won't be going on to school or getting a job, but will be going on disability for life with autism. That isn't happening now because autism doesn't affect the adult population at anything like this rate. When it begins, it will directly coincide with the retirement of the baby boom generation.

We will all be paying a terrible price for the failure to address the autism epidemic. The words of Laura Bono of the National Autism Association are also a grim forecast for the future: "As those children reach adulthood, the U.S. is ill-equipped to care for them. Not only do we not have enough services for adults now, the light at the end of the tunnel is a train. Frankly, we don't know what we're going to do."

Anne McElroy Dachel
Chippewa Falls, Wis.

http://independent.gmnews.com/news/2007/0228/Letters/016.html

Ms Dachel:

While I wholeheartedly agree that we should be concerned with the latest NJ autism rates coming in at 1 in 94, however, I would like to disagree on several points in your assessment of this "health care emergency".

First, as you stated, we need to stop this from happenning to more children. How do you propose we do that? Since I would assume you are pointing a major finger of blame at the theory that environmental causes like toxins in the environment and specifically thimeresol and other heavy metals in vaccines, I would point out that studies have proven no direct causal link between thimeresol and autism. Would you propose we spend our hard earned tax dollars continuing to disprove this relationship?

Personally, I'd prefer to see this money spent on services, detection and awareness. I'll leave the research to the ferderal money from the Combatting Autism Act and the 950+ million dollars earmarked.

Next, you characterize these 1 in 150 children as becoming an overwhelming burden on society once they reach adulthood. I would submit that a vast vast majority of those 1 in 150 are classified as Aspergers and mild PDD-NOS and will have no trouble being productive members of society. Besides, if we spend our hard-earned tax dollars on services, detection and awareness, we will be able to treat and help these kids earlier so that they may even lose their daignosis before 18, 12, 7 or even 5 years and earlier.

Lastly, I like to take exception to your challenge to find all the autistic adults. Remeber all those high functioning Aspergers and mild PDD-NOS children you characterize as burdening society? Well, they grow up and DO lead productive lives; maybe as chemists, technicians, computer programmers, scientists. Some may seem anti social and 'quirky', they're out there though.

Don't take my word for it, ask some of our local programs like IMPACT in Middletown that work with transitioning autistic teenagers; Bayshore Jointure Commission working with preschooler through high school; the countless other excellent programs in both public school systems and private programs; therapists and volunteer programs in the Bayshore area in Monmouth county. Better yet, come see what happens when we have more early intervention; good therapies; well funded school programs; and SOLID research into causes and strategies to help children AND adults. In short, our 1 in 94 number is a testiment to what happens when you take autism diagnosis and treatment seriously.

Very Truly yours,

Bill



Whew, dat wuz hard stayin' in character dat long! We know what we're doin' in dis state tho', an deeze people shouldn't be messin' wit MY backyard!

ND vs NT...WTF???

As many of you are aware, my 'hangout' on the internet, if you will, has been a message board called AutismWeb. My wife and I have been registered on the board since June of 2005 shortly before we moved (someday I should document our M*A*S*H-like move in the summer of '05). Linda has been off of the board recently onto other internet quests, I spent much of the time arguing the finer points on the Media and Politics side.

I have watched a transformation of AutismWeb (and myself to a certain extent) from an almost exclusively biomedical bastion to becoming more balanced, for lack of a better word, in its collective thinking. It was a bloody bloody battle in the Politics group about six months to a year ago, and skirmishes still break out from time to time. But, science and data-backing have become the norm on the Media and Politics side.

This critical thinking comes at a price however; the price that anything that has a lack of full scientifically studied backing, will be attacked and sometimes mocked. I will grant you that some therapies are more dangerous than others; some are less 'proven'. But these biomed parents are betting a healthy amount of time money and effort on these therapies. To have them cast aside as unproven and therefore unworthy is an affront to their belief systems.

I finally got to that word 'belief'. At times, I watch the fights on the boards and liken them to almost religious fervor; or should I say, the 'faith'-based biomed vs the rationalists, doubting the existence of a supreme 'cure' being. If you've ever been in an argument with a friend about religion, it either was not a real argument or you no longer have a friend. Attacking one's religion is not something that is taken lightly, the concept of cure is somewhat at the heart of the issue.

The Neurodiverse consider the word 'cure' as an assault against who they are. Pretty reasonable request, to have the essence of who you are NOT be considered a disease to be erradicated. The perception of having a war declared almost against your very existence could be very unnerving.

Being one who has wound up somewhere on the border of this war zone, in the no-man's land, I have a somewhat unique view of both sides, their weeknesses and strengths. Why people who have so much in common yet seem to be diametrically opposed to one another is beyond me. It's like those at the former Berlin Wall or those fighting in the Middle or near Far-east. We pit brother against brother, relative against relative. The two sides are so much alike. But each pushes the others hot buttons, we have two different ideologies facing off.

I guess all I'm saying is "can't we all just get along"? We have so much to fight for: better services; discrimination; research. But, I know like Palestinians and Jews; Indians and Pakistanies; North and South; we have a long way to go toward better understanding

Why?

Mommy, daddy, Aly, Jay Jay, Dee, Oreo, hair, teeth, toothpaste, cookie, juice, cuppie, blankie, baby, book, puppy, bear, Mickey, paw print, a clue, Dora, couch, socks, shoes, bye bye, clap, milk, boy, picky up, ball, bubbles, no, tub, no means no, Elmo, Big Bird, bitz, cheese, yogurt, Pooh, Tigger, boo, ouch, bibbie, apple, bar, cow, poop, bobo boooo, taste, more, read this.

These 50 odd words I found pinned up to the freezer in the garage last week. I had found them unpacking last year and we had put it there as a place of unobtrusive reminder of the words that Liv had spoke befor she regressed beginning in January 2004. Luckily, we had found them while packing for the move to Monmouth Co NJ from Sussex Co NJ mid 2005. I would have hated for that small piece 5"X8" white paper to have been lost. It's evidence of the world that she left behind more than 3 years ago.

Mommy, dada, no, hi. These are the discernable words she says now. Not on cue; more like as pop outs. That is not to say that she does not communicate now; she can 'get' and communicate dozens of concepts, sometimes prompted, sometimes spontaneous. She is obviously deeper in thought than she was when she was a toddler. I just miss having the chance to communicate concepts like pointing out fleeting beauty; naming things and having the concept repeated and understood; running, tackling hellos; tearful goodbyes. I know I'm being selfish; these kind of things are no longer part of her. Just as satisfying actions have replaced them and these things I wish for may well resurface later.

I miss them just the same...

Bill

The Other Reason We are Exceptions to the Rule

With the autism rate unofficially now at 1 in 150 and, in my opinion, soon to be 1 in 100, I started thinking about how else we are 'handicapped'. In between breaking up fights, coercing my oldest to do some housework, changing diapers, and having a 2 minute conversation with Linda that took 4 hours, it hit me. What's the average # of kids per family? 2.3, right? Just for arguments sake, let's put numbers to the family size (stats from the 'out of thin air' website):

19%- No kids
17%- 1 kid
23%- 2 kids
21%- 3 kids
15%- 4 kids
5 %- 5 or more kids

Believe me, the last group is definitely disabled. I'm thinking of printing '1 in 20' t-shirts for all of us in that last group. Somehow we wound up in that last group. Don't know how (literally we KNOW, but figuratively we can't figure out why). As I am so found of saying, parents of 4 or more are selectively brain damaged. We forget what it is like and have another. But, I think the day is coming where we can be classified and help could be given us for this disability we suffer. Some of the classifications could include:

PDD-NOS- Purchase Diapers Daily-Never on Sale.
Monetary Apraxia- Inability to keep money in the bank
Ought-to-clean-that Spectrum Disorder- Slow changing of color of carpet based on the food and drink-stuffs being served (and spilled).
Aspringers Syndrome- Buying pain relievers in bulk.
GF CF diet- Good Food Caught Fire, we ain't eatin' good tonight

Just the general pathos of having no life should be enough to illicit some kind of fund raiser for those of us stricken with this debilitating disorder.

Example of my stream of conscienceless life:
4:45- I came up with the above idea for a blog entry, Begin typing
4:55- "Hold this", Linda says, and I begin typing with 1 hand, holding a urine sample in the other.
5:01 "Wait, Bill. I can't do this by myself, come here. I wind up with 2 urine samples, typing ceases
5:03- With Linda now 'testing' urine I am now charged to do a bath on one while monitoring the other's bubbles-in-the-sink playtime.
5:06- I now try and continue typing in the bathroom while watching two in the tub.
5:08- Give up typing in the bathroom. Too much going on, as I am also preparing dinner in the next room while older in the tub watches younger.
5:18- Pass Liv out of tub and off to Linda as she is done testing, now devote myself exclusively to supper preparation.
5:28-6:03- I serve as wait staff for 3 of the 5. Cook for all 5; Linda is waitress for the 2 GFCF patrons. No tips received...yet again.
5:41- 6:16- Wait staff squeezes in dinner
6:17-8:12- Bus staff takes over; successfully hire temp to empty dishwasher; threaten bodily harm to anyone not cleaning; household falls in and out of complete anarchy. Amazingly, two youngest are in bed.
8:13- Finally get back to blog

With proper therapy these people CAN be helped...

Bill, Linda, Aly, Jason, Dillan, Liv and Grace


PS If you don't already know, please do not be offended by my parodying of Autism, our two youngest are there on the spectrum. I invoke my poetic license to make fun of it.

AUTISM AS AN HISTORIC STRUGGLE FOR RIGHTS

It just occurred to me that for the first time in history, a group with literally, in some cases, no voice is gathering together in, for the most part, physically no place, for their rights to exist as individuals and a group.

Never has the ability ever existed for people with a communication and social disorder to band together. With women's rights, rights for African Americans and even gay rights there was mobility, numbers, and vocality; this time, the revolution will be blogged. With this movement, I almost envision a dispassionate Stephan Hawkins-like voice giving a passionately written speech. Not a wildly cheering crowd but a potentially deafeningly precise voice at whatever would be genuinely considered harmful to their existence. It's not hard to hear the passion in many of the voices of the autistics, even if it only can be delivered in the written form.

It is surreal that a group of people almost literally discovered and 'incorporated' a little more than 20 years ago with the DSM III criteria, has taken the tool of the day, the ONLY media they could have gathered together in and achieved levels of understanding and comprehension literally impossible just a few years earlier. They (we) have discovered each other; formed groups, formed opinions, discovered common symptoms, dreams, abilities and indignations. Parents found a way to network; Autistics found a voice, both individually and as a group.

Being a parent of young autistic children, I feel like an outsider, watching what's going on but not yet affected by it. But to steal someone else's phrase: if you're watching it, you're part of it; if you're close enough to see it, you're in it. I understand the indignation that many autistics and their families feel about the language being used to describe autism and what should be done. Words like: combating, War, Defeat, Cure, Disease certainly do not invoke a sense of well being when you are in the 'crosshairs' of what they are 'defeating'.

I have been defending the language with something akin to 'the ends justify the means'. That those using the language are only trying to help autism get into the mainstream media and mainstream money. With the advent of the combating Autism Act and that Autism Speaks has gained national notoriety, it seems this has been accomplished. Now is an opportune time to attempt to take hold of the reigns from those who may have been misguided or single minded in their quest to 'save' their children from unseen enemies.

While my sentiments have been with the autistic 'pride', I shall endeavor in the future to be more vocal in the attack of inflammatory language and pressure those large organizations to change their attitude and rhetoric. It's not a war, it's their life...
Bill

AUTISM BLUEPRINT

I made a comment today on the AutismWeb board and I wanted to expand on it a little. The discussion was along the lines of "If you could cure autism with a pill". I'm going to plagiarism my own stuff:

"The 'magic pill' certainly puts a different spin on it all. Implications of changing who they are at the core is disturbing (especially in the genetic manipulation category). I would prefer to work with the 'architect plans' we were given and use the best materials and find the flaws that can be corrected as we build. I would hate to think that I messed with the 'Frank Lloyd Wright' plans to come up with a cookie cutter ranch..."

I liked the Frank Lloyd Wright reference and, as I thought about it, it had more and more connections to my life dealing with a autistic daughter:

• Frank Lloyd Wright buildings went notoriously overbudget, those of dealing with the spectrum, nuff said
• Buildings were often leaky...Again...spectrum...nuff said
• Frank himself, if I recall, was notoriously tough to deal with, not to the extent of many autistics.
• He made the most of the space he had... What was that one house called? Waterfall or something like that. I imagine my daughter has created a beautiful personal space; even if it has only enough room for herself and her fingers in front of her face! She's letting us visit more and more lately.
• His buildings are arguably some of the most beautiful in the modern age. You KNOW MY daughter IS the most beautiful in the modern age. Actually, its 4 way tie with the other girls in the house.

Alright, turned sappy, thanks for listening,

Bill

GOTCHA!

Could also be that I had less than 75 minutes left to think up something for April Fools Day. Sorry...APRIL FOOLS

WHY DO AUTISTIC KIDS HATE THEIR PARENTS?

Maybe the question should be why do ASD people hate parents of autistic children? Or should I go the other way and just say why do kids hate their parents? My oldest being 11, I am only now learning recently of this 'kids hate their parents' syndrome. Being the parent of an autistic 3 year old (as well as four other children of various NT ranges of disfunctionality), I find the level of venom coming from various sources disturbing. Being a parent of an autistic child who chooses to try various biomedical approaches, I am feeling as if I have to explain EVERYTHING I do for my child. I assure you, nothing I am doing with my child is life threatening nor life altering (nor do I expect it to). All I am looking for is better responses to her various therapies.
I guess I WAS looking for a "cure" at one point, but my knowledge and expectations have shifted from that of finding the 'antibiotic' to finding the right type of therapies to reach her and have her be able to reach me. Why should vitamins and diet be met with such a backlash of anger though? No need to answer that, I know who the anger is mostly pointed at, I just wonder why it flows down to the parents.
Which brings me back to my title. Do you think my Liv is going to grow up to hate what I tried to do for her? I certainly hope she has the presence to formulate and to express it to me!

Sorry for a disappointing inaugural post. I just felt that if I post graffitti on all your blogs, that you have the opportunity to draw on my walls...Bill