Wednesday, February 28, 2007

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.

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,


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!


Mike said...

That is an excellent rebuttal. Are you sending it to the editor who published Ms Dahel's letter?

Jennifer said...

Thank you for posting this, and welcome to blogging. I look forward to reading some more from you (and you have a lovely insight)!


Phil Schwarz said...

Excellent, Bill.
Except for one thing: they don't need to "lose the diagnosis" to be successful.
Truth of the matter is more and more of them will succeed in life, and they will *always* sense, feel, and think differently than the majority.
And *that's O.K.*
How do I know this?
I know it because *I* am one of the so-called "hidden horde".
Were I born late enough in the last century that I'd have been of school age after the appearance of Asperger's syndrome as a diagnostic category, I would have been diagnosed more quickly than you can say "Fred Volkmar".
I've learned a bit about how to navigate an overwhelmingly non-autistic world since my childhood, and I learned some critical sensory coping mechanisms growing into adolescence, so I don't appear quite as different from my peers as I did then, but I'm still me inside.
Not only that, but let me strike a further chord of fear in poor Ms. Dachel's heart: I have *added* cars to that metaphorical oncoming train she thinks she sees. I have a wonderful teenage autistic son, and a wonderful teenage daughter in the broader phenotype.
There are more of us out there than is convenient for the story Ms. Dachel wants to sell.

I suggest that she sit down and stop making fraudulent arguments in the newspapers...
... and that she let her *son* stand up and speak his mind.
(She will admit, when pressed, that he is capable of doing so, won't she?)
Knock f'ing knock.
He's *there*.
He has his *own* opinions.
Let him answer the door, lady.
And unlike your listmates, I don't go putting my arm through anybody's windows.

-- Phil, born in NJ :-)


Yea, I'm sending my reponse verbatim. I just don't get the level of disinformation for what the autistic population really is; the seemingly lack of urgency for therapies; the apparent contempt for those on the spectrum.

I was where she was a year or two ago, but I've done the research. We can always argue about what type of therapies to use; but to discount thereapies almost completely??? I understand the need to research, but at the EXPENSE of helping those at the spectrum? I'm sorry, I'm not buyin'....

Thanks for stopping by,

Do'C said...

An excellent letter in my opinion (whatever that's worth), Bill. I'm looking forward to reading more from you too.

PS: don't forget to turn on word verification, it will slow down some of the spammers.


Well, it's pretty much verbatim from my blog, except for the last paragraph, but it's in the local paper:

Thanks for the word verification tip



Sorry and damn these HTML tags anyway if this don't work...

Do'C said...

Bill, for links use the html tag < a >

There's a brief explanation/exmaple at this site.

Feel free to e-mail if you have any questions. You're also welcome to practice with this at my blog (there is live comment preview so you can see if what you're typing is working most of the time). Just don't click submit and the practice won't even show up.


Eloquently put-very insightful.