What Do You Say?

Linda was in the local Toys R Us the other day (along with supermarkets, these stores give her 'Frequent Shopper Supreme Express Concierge Service' due to the six figures of extra revenue she brings into the stores each week) and again was on the line, when the cashier began engaging Grace. "Oh how cute, a pretty princess! Isn't she the prettiest little princess!". Linda tells me this woman has cute-sily verbally accosted Grace several times in the past and this day was no exception. When it came to payment time, Linda noticed one of those scanning donation flyers for Autism Speaks and decided to give. "Oh it's a worthy cause, a very good cause" the cashier said (Imagine the voice of Fran Drescher and you got the idea-r!). Linda says "Yea, I know it's a good cause. My 4 year old has autism and Gracie here is PDD."

Suddenly the air rushed out of the conversation and the women became silent and visibly flustered. So much so that she packed but forgot to ring up two DVD's she was buying (we took this as HER donation for autism). No more princess, no more cutesy comments.

Linda came home and said she was disturbed by the incident. I said "Well, what kind of response were you expecting from her? 'Gee, I'm so so sorry?' ' Wow she doesn't LOOK autistic.'?" In the woman's mind, she was put in the same position as saying "How's your husband?" to someone who just got divorced, lost him to cancer, or is going through some other unexpected trauma. You're stuck for words. "You're better off without him"; "He's out of pain?"; "You know, they're progressing so fast on that" Those lines could get you in deeper trouble than the "How's your husband" line that started it.

It got me to thinking, what response should Linda have given HER? With Autism Awareness Month on the doorstep, we all have a duty to raise consciousness about who our kids are and what we have to do to get them ready for the world. I was trying to think of a one liner, a quick superficial type comment that could resonate with the woman long after Linda left and would hopefully still be ringing the next time her or another parent with an autistic child came in the store. Something like "Yea, some autistic kids might throw tantrums because of the florescent lights, Gracie just tends to repeat entire Dora episodes and is not good with conversations with strangers, but hey, what kid LIKES to talk to strangers!" A little too long but close.

So, I'd like anyone's suggestion for trite, quick and impactful statements to use in the month of April; it may not get us free DVD's but it WILL help get the word out...

Conscientious Objective

War has been declared against those who are technologically challenged. We are bent on removing all indications of computer illiteracy. All children of parents afflicted with this disease deserve your pity and support. Many of these parents have been brought back from the brink of certain lifelessness and can be taught to behave like all of us online...

We must understand and accept those with bi-polar disorder. These bouts or euphoria and depression are not a problem to be fixed, but a way of being to be understood. We should allow them to decide for themselves if they wish to change.

Neither of these two statements make real sense, but in essence that’s what ‘battle’ lines are being drawn between the neurodiverse and many other groups advocating an all out war on autism. I'm really not trying to get into a discussion about what analogies can be drawn between bipolar and autism, I was just trying to make an extreme comparison to some non-life threatening (bipolar can be, I think) neurological disorder.

Wars are society’s way of mobilization, I know it’s not right, but what other metaphor do we use? War analogies provide rallying cries, stir feelings, promote conviction and imply a grand effort. But I guess what’s at the core of the discussion is the connotation that war brings. It’s the fact that the terms are too strong and negative to be used.: War, Battle, Combat and, what’s really at the core of this discussion, the word ‘HATE’.

But there is a war of sorts being fought for services, for awareness, for tolerance, for better diagnosis. I guess that's where the difference is, we are fighting FOR someone and not necessarily AGAINST anything except maybe fear, ignorance and prejudice-- against society’s perception of autism.

I guess you could rally around a relief effort banner; it’s the only other time we have mobilization. But like the tsunami, a relief implies some kind of disaster; and the same way you can imply a war against autism you can mis-attribute the disaster to those people on the spectrum rather than the condition of services, diagnosis, and insurance coverage.

We clearly have to step away from the 'autism is the enemy' type of speech, as well as the autism-as-trainwreck language. Autism, regardless of your views on causations, is a lifelong way of being for autistics and we can see how the language is received by those on the spectrum. I used to try the ‘hate the disease, love the child’ creedo, but that would imply that :
A: it is a disease and:
B: you can separate it from the child.
I can accept neither statement at this point. It is a disease only in that something is preventing her from communicating to the best of her ability. I can separate it only in that I can see past what’s blocking her from me.

This brings us to the ‘passive’ side of the discussion. While every step of the way, I want my girls to feel that they are sliced bread cubed (mathematically not culinar-ily), I feel I owe it to them to push every avenue I can. I want them to know that we have tried every reasonable approach. That something as trivial as money was not an obstacle; that time was not a consideration. “TO DO WHAT?”--- you and me and my girls figuratively ask? I want to improve their communication, their concentration, their mood, in short, I want to improve their chances in life.

My wife and I come from similar backgrounds; where praise was sparse, excellence was assumed and more was expected. Blame it on my roots…we’re pushing the girls the same way we push the other three. Not towards normalcy; just toward their excellence.

So can we use the war analogies? I think not. Too many battles are raging in real life with real people fighting and dying. War analogies have been used too many times to stamp out monsters like polio, small pox; to fight cancer, leukemia, muscular dystrophy. Leave the war analogies to the killers and maimers. Let autism fight the fight of passive resistance; but nobody’s gonna stamp out my girls in my lifetime…

Meanwhile…I think I’ll teach my dad how to blog…

Radar Built into Children

Scenario that prompted blog- Minor neck infraction brought on by standard Sunday night stress. Wife had touched my neck and I requested a neck massage (Very rare occurrence that I ask). Massage begins, one knead...lean in...two kneads...OK starting to find the spot...three kneads..."MOMMM"? Kneading stops...standard frustration ensues. "What"? Linda says..."Nevermind..." the response comes. I begin cackling uncontrollably, even the oldest finds the irony in the situation.

Parents have claimed radarlike abilities on their children; the ability to sense moods; to 'know' when something is wrong with their child. But I think the radar is reciprocal. Children have an uncanny ability to stop a serious conversation; ruin a mood; destroy the climax of a movie; come in just when they are being talked about; or arrive at just the moment a vulgarity leaves our mouths. They either KNOW when their interruption will be most destructive or they are just ALWAYS interrupting. I thing it's the latter, but that is just a way to ensure the former.

There was a great Baby Blues comic strip that illustrated the axiom that Linda and I have 5 minute conversations that last 12 hours. We have become experts at maintaining focus on a subject despite the verbal and physical battles that rage on around us. That is not really true, we can't focus on ANYTHING. "What was I doing?" is the single most asked question to ourselves. “I’ll talk to you later about it” is the top rated interpersonal phrase uttered. Only that, sure enough, as the conversation begins after we feel we are safe, inevitably a child will crawl out of the bedwork and present us with a hopefully sufficient enough conundrum to allow them to either stay up a little later...or win a position on the master bedroom’s floor.

We do have our defense mechanisms. Linda has this 'voice' that she has told me is her 'tuned out' voice. "MMMMmmm..." she says in mock interest as one of my sons drones on about a specific scenario in a video game. I found it amusing until she used it on ME once and didn't realize it until I pointed it out. It's a coping mechanism; it's the same way you have to filter out the 'noise' of all the information that surrounds everyone; you're in danger of missing good insider info though, but hey that's life. "MMMMMmmmm, the cat's stuck in a box of styrofoam peanuts? That's nice honey, go downstairs and play". As for my defenses, I only have a psychotic growl of “LEAVE ME ALONE” when my cup runneth over.

Meanwhile, the massages are that much more sweeter when they can be given. The conversations are more intense when we can have them. Although, whenever we get the time to have them, we always have this ‘twitch’ in anticipation of the incoming ‘whatever’ that we may get at any moment!

We've Forgotten What's Normal

I have three of those T-shirts that Linda had the kids make for father’s days past; you know, the ones with the hand prints of your kids that say "Best Dad, Hands Down"? I have one from mid 1999 with one set of handprints; one later with 3 sets of prints: then one with 5 sets. Linda and I were married in '88 and we had 5 years of childless bliss; then we had Aly and had 5 years of a single child (childfull bliss, not quite, but still fun). Then, in the course of 5 years we had 4 more.

In the first 10 years, we had given ourselves plenty of time to adjust to new phases of life; these last 5 years, life has barely given us time to breathe. Someday I detail it out, but today, I want to focus on trying to find out which way is up, and to see if anyone else is suffering from this 'normalcy vertigo'.

These last three years, we have been transformed from a large, 'normal' family, to one dealing full time with special needs children. We've learned more than we've ever expected (or wanted) to know about ANY disorder. We have readjusted our outlook on the future. We have re-geographied ourselves. We have had to reassess what we considered 'normal'.

The 'What to Expect...' toddler/ preschooler books are now in the landfill (maybe I’ll write “What to Expect, the Autism Years”). Potty training, formerly fretted over at 2 or 2 1/2 , is now almost a far-fetched fantasy. Imaginary play that was, in the past, a source of amusement and endless game playing is now a mere memory and something relegated for the 'older' 3. Some many things taken granted for the first 3 times are now things we must scratch and claw for.

Despite, or maybe because of, the mayhem, I have found myself hyper aware of every advancement they make, perhaps 10 times more than I relished accomplishments of our first. Talking, reacting, imitating, defending their ‘turf’- once milestones that were whipped by at 70 mph are now watched with dumbfounded deliberate exuberance, like teenage boys passing a hitch hiking girl in a short skirt. I somewhat feel like a cured cancer patient who gets a new view of life; he may have half a lung, but he has a whole new perspective on the world.

I feel torn, because I feel bad for the older three. They had several years of normalcy before being thrown around in this storm. But they are young, strong and resilient. They do take it hard sometimes, but from the autism perspective, they take it in stride and are regulars at the monthly sibling support group at Livie’s school. They miss out on so much though; so many lost opportunities because we are tied both financially and physically to caring and development of Grace and Liv.

It’s like having two families; maybe something like merging two divorced families together. “We did things like this in the past but now things have to be done this way because of the ‘other’ family”. Except, like a dog with 3 legs, we know nothing else; we hobble along as if it was never an issue. We/they take it for granted that outings must be planned for far in advance; that disappointment over missing things because of time constraints is sometimes the norm.

I could go on and on with the details. Maybe I can do a “Child of the Month” and detail out their unique ways of dealing with this autistic life. But anyway, as you probably have already said to yourself “What is ‘normal’ anyway”? With extended families, weird relatives, divorce, gay marriage and adoption, single parent households, grandparents/relatives raising children, there IS no such thing. We had felt we were out of the ordinary because Linda and I have maintained our marriage for almost 20 years; now we’re not normal for another reason: 2 autistic kids. I guess I wouldn’t want it any other way…

Mating Habits of Household Inanimate Objects

I bet you were aware of this phenomenon without actually thinking about it. It has recently been discovered that ordinary household items have the ability to procreate. Research is ongoing as to the nature of reproduction, but evidence is mounting of these reproductive qualities being legitimate and posing a real threat to households across the globe. Being in a house of 7 plus other living creatures, I find I see this phenomenon at a faster pace than other households. Here are some examples to look out for:

• Dishes, cups, bowls, forks, knives always seem to procreate, they will spontaneously generate at the sound of the dishwasher running. Dirty dishes are the only variety that regenerate; clean ones are an endangered species. They are a stealthy bunch and always resurface exactly half way through the load. Use of paper products will lessen the infestation, but may lead to the scourge of excess garbage.
• Laundry is the fastest breeder, by far; it moves like dandelions on time lapse photography. It can be seen spreading outward from hampers and upward and outward in laundry rooms. It is only the dirty variety that is fertile, as with the dishes, the clean variety is on the endangered species list. Socks reproduce, but curiously their offspring have little resemblance to the parents and they normally have only one child. Only remedy for these is lack of proper hygiene and subsequent loss of friends
• Fast food toys or as I like to call them "seconds upon seconds of playing enjoyment" . These can be controlled with proper diet.
• I've noticed lately that stuffed animals appear to be spontaneously generating. As we all know though, science has disproven this theory, it has now been discovered that Beanie Babies bring their own special eggs and fertilize other unsuspecting sewn creatures. These are overrunning my daughter's room and are beginning to get a foothold in my sons' room as well. if anyone knows a good exterminator in NJ, drop me a line

I'm sure research will uncover other hazards in this area, if you have any sightings, contact the Center for Dust Control (CDC). I am off to write my thesis on another area of household theory, Physics of Children and Households. Some topics I am working on:

• Magnetic Attraction of a child to the phone at the ear of a parent. May simply be an attraction to anything busy.
• Law of Spills occurring during moments when time is at a premium. Close correlation to bowel movements of toddlers and proximity to time needed to leave for school.
• Volume of parent's voice in inverse relation to the relative ease and desirability of the task. Wives claim this continues into husbands as well.

Freethinker

I had to write a note about Liv's recent independent forays into the world of cognition.

Last week, she made a leap in her PECs program, Picture Exchange Communication System for those who do not know (including me, I had to look it up!). She had been working off of picture from the cover. But last week at school, she found her cover empty, so she proceeded to open her book and go through the pages until she found what she wanted and pulled off the picture she wanted! Her teachers were shocked because no one had been working on this with her. To make sure it was not a fluke, they tried it twice more and both times she picked out some different things she wanted. She also repeated it at home this weekend!

OK, one thing is...one thing, but another thing is ANOTHER THING! Today, she came in from riding a bike with Aly and the therapist. She was thirsty and when no one was quick on the draw, there was a cup and a small bottle of juice on the dining room table, so...she just poured herself a glass! Again, nothing she was working on; this is no where close to what she normally does. Her fine motor has been getting better over the past month, but this was unexpected!

It's obvious to us she is paying attention, she's just picking this stuff up from watching us, her teachers and, oh yea, her little sister. Both Grace and Liv have been playing with some kid percussion instruments lately. The teachers say and we agree that we have to push her a little more, she's really beginning to progress and maybe she's just bored and needs new challenges.

Sorry to fill a post bragging, but you have to sit back and admire the view when you hit high ground!

Bill

Prescription for Success?

Linda made a comment this morning that somewhat shocked me: "For the last few months, Liv has been off of all prescription medications she'd been on since 2004"! We have fought to loosen bowels then fought to solidify them; fought with reflux, vomiting, inflammation as well as pain and supposed allergies. She's been on Xantac, Singulair, Miralax, then Sulfasalizine, Pentasa, Prilosec (note: correct spellings on pharmaceutically-invented names has never been my forte nor priority). We have run the gamut to try and help her with her gastrointestinal issues

Today, she has had far fewer night wakings, better moods, quicker cognitive processing time. Most of her bowel movements have been regular; if temporarily blocked, instead of a 'prescription', we are instead using slightly larger doses of magnesium than her normal daily dose and she is clearing up.

Yea, I could attribute all of this improvement to growing out of the 'gut' phase; yea yea 'no epidemiological study has found a connection togatroinblahblahblah'. As always, my problem with epidemiological studies of autism is using the whole of the group to study and dispute specific issues. If entire set A is not caused by or have symptoms of thing B then the broad relationship is disproven, but the specific issue for specific subsets remain. Kinda like trying to find out what causes cancer by looking at the whole 'cancer' group. Autism is complex (IMHO, of course) and no simple solution nor symptoms exist. It could also be that the stress of being non-communicative is causing some GI issues. Anything except what we are doing could be the thing that could be helping her.

In other words, my belief in the vitamins/minerals helping her GI issues (according to some people) I am the same as a baseball player with a hitting streak with very dirty and smelly socks because I have not changed them for fear of breaking the luck. Problem I see is that much of what we are doing is not irrational bead-counting, it's common sense nutrition. It's more like the extra batting practice or a new stance in the batters box, more science than superstition. Ooooh, baseball's coming soon! Not a fan per se; more a fan of the IDEA of baseball, a la Field of Dreams, the Natural or Bull Durham.

I won't get into conspiracy theories that state that big pharma will bury 'home remedies' in order to push their own, study-backed, and infinitely more profitable versions of 'cures'. Nor will I rail further on the hypocrisy of for-profit companies controlling what and how 'cures' are brought forth and are judged more on how much they will make than how much they will help. Sorry... I got into it and railed...

I guess the difference in our maturity in this quest to help Liv is just that. We are no longer trying or doing things to 'cure' her of autism. We are doing things to help her mood, to better concentrate, to make her feel more comfortable so she can help herself.

Trying existing pharmacologicals, natural or otherwise, to solve problems either not covered by specific prescriptions/therapies or inadequately covered by them. That's how I would define our involvement in biomedical interventions at this point. I'm surprised how many of those you would not suspect, are really closet 'biomed' parents as well.

Hey Bill, I got an Idea!

I would like to do a half funny, half serious analysis of a problem that I, and my other namesake, Bill Gates share a common interest in. If successful, since we share a same name, I would like to humbly request a mear 1/2% of his wealth or even salary!

Bill is concerned over the lack of technical workers available in the US. He is proposing we 'beef up' our education process to better train our children in the ways of science and mathmatics.

ARTICLE
Gates also called on lawmakers to give more resources and attention to improving the teaching of math and science — knowledge essential to many of today's jobs. Another recent federal study found 40 percent of high school seniors failed to perform at the basic level on a national math test. On a national science test, half of 12th-graders didn't show basic skills.

"We simply cannot sustain an economy based on innovation unless our citizens are educated in math, science and engineering," Gates said.

Legislation moving through the Senate, backed by Democratic and Republican leaders, seeks to get more people to become math and science teachers and would improve training for them. The bill also seeks to get more highly trained teachers in poor schools and would offer grants to states to better align their teaching with what kids should know to succeed at a job or in college.

Well, I have an addendum to this legislation... let's figure out better ways to educate the autistic. After all, many are technically inclined, task and number oriented and are maybe more than willing to take on the drier, less social oriented demands brought on by many jobs in this field.

Gates said the nation's economy depends on keeping the country's borders open to highly skilled workers, especially those with a science or engineering background. Federal law provides 65,000 H1-B visas for scientists, engineers, computer programmers and other professionals every budget year. High-tech and other employers say that's not enough.

Hey, Aspies can fill that 65K !
If we look at the numbers from the IOTA consortium (Institute of Thin Air for those in the know), we have some 1,000,000 autistics in the population. If 70% are able to function in society on an independent basis and we say that less than 10% of those are under educated, we have our 65K target.
I know I'm over generalizing saying autistics are prone to science, engineering and computers; but it's better than saying they are prone to head-banging, feces smearing and are just 'shells'!

Anyway, with this Austistic (or Aspie)Improvement Act, we would identify those children on the spectrum, put them into accelerated classes in their specialty of choice, and have them out in the workforce in less than 10-12 years! The only need is to have some choice classrooms and specially trained teachers who can learn to deal with the special educational challenges of autism.

Hey, we can even IMPORT Aspies from other 3rd world countries. The US could become a hub for autism training. We could have a technical university to rival MIT (MIT is already devising ways to syphon off our best talent, no doubt-- we'd probably be syphoning off theirs!). Heck if we need to fill in some seats, we could even reinstitute thimeresol in vaccines and manufacture autistics if you believe the rhetoric being espoused!

I really think that Mr Gates would go for it. After all, he is a closet Aspie, right?

PS
Case and Point, they're already getting started with the design!

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