Speaking for Those Who Cannot Speak

Or is it speaking for those who cannot articulate; or acting for those who cannot speak; or just plain raising a child? Which direction am I/should I go with regards to the betterment of my young autistic children?

Are we experimenting with biomed (obviously), ABA (possibly), speech, OT, physical therapies (could be)? We have this unprecedented opportunity with early diagnosis to figure out what is the best way for an autistic child to learn. Why shouldn't we try or why (better yet what or when) is it wrong to try? Aren't we trying to see what autistics need early in life, when they could most use a way to communicate, control their issues of concentration, help their functionality within this neurotypical world? I feel we are at square one with autism therapy/training and parents of young uns' are stuck holding the research bag.

It goes to my original shock of the neurodiverse attage of understanding without changing. Even the most fervent of the 'diverse' of the neurodiverse must agree that something should be done for a young autistic child, the issue is always what. What is invasive? I see a lot of talk around the objections to what is deemed as trying to make a child look and act more 'normal'; but for me, it's a blurry line between normalcy and improving a child's condition. My example is my 3 year old, Grace, is having trouble with transition. I think transition is not necessarily an autistic trait but it seems like the work to get Grace to transition easier is made more difficult by her ASD tendencies of wanting sameness and control over her world. Writing that I am again confronted by what is 'normal', what is pushing too hard, what is a tantrum of a three year old vs what is an outcropping of an autistic tendency.

It's back to 'difficult to get it'; how do we take these therapies, these studies, the politics, the day to day existence and desire to make things 'easy' and mold them into a cohesive attack (oops, thorry, used a military term) a cohesive strategy of giving my children what they need vs what is best for me? Kinda between a rock and a hard place, dancing the line between all of what the schools and science says should be done vs what an autistic adult may consider crossing the line into 'normalcy indoctrination'.

The people looking at the neurodiverse movement have to see the symbiosis between the autistic parents (parents of autistics) and the autistic adults. Autistic adults need to look at the opportunity to assist the next generation with advice and guidance; the parents need to look at the opportunity to change the views of the schools and the system to a view of assisting the growth of this generation vs societies attempt to create NTND's.

Why does Hamlet's soliloquy seem to keep popping in my mind with regard to the decisions that I need (want, could) make for my children:

Thus conscience does make cowards of us all,
And thus the native hue of resolution Is sicklied o'er with the pale cast of thought,
And enterprise of great pitch and moment
With this regard their currents turn awry And lose the name of action.

We are in a position to do something (that clock is always ticking in the back of my mind,though I try not to listen). It is a great noise coming from all angles about what to do, all we really want is what's best for them. But is it action or inaction that we should be doing? Is it their balance or ours that we are seeking?

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!