Tuesday, May 29, 2007

Journal Integrity

It happens from time to time that I will run across two separate sources of information that somehow relate to one another, and the combination prompts additional thought. Today, one of these circumstances occurred.
First was Kev's post titled "On Media, Neurodiversity, and Science". In it, Kev refers to the value of the scientific method and the value it has for ongoing progress in autism research. And, what's more, how those who espouse acceptance of Autism differ in their approach to information dissemination from those who espouse a cure for autism.

Then, a few hours later, I came across an interesting opinion piece in The Wall Street Journal. It was authored by Dr. Scott Gottlieb, former Deputy Commissioner of the FDA here in the U.S. Titled "Journalistic Malpractice", the article discusses the politicization of once-respected Medical Journals. He opens:

"As medical information is exploding and becoming more accessible, all of
us, particularly physicians, need objective sources to interpret data and
present a balanced view. Unfortunately, major medical journals that should
be filling this role often put more weight on pushing political agendas."

Which, of course, leads to the point - not dissimilar from that made by either of my two cited sources named above. That is - the proponents of the mercury/autism connection consistently cross the boundary between rational thought and self-delusion. They arbitrarily assign validity to various positions based not on truth, reality, or data, but instead based on what most closely matches their accepted world-view. They apply their efforts more towards propaganda than towards analysis of existing information. Their weapons of choice in the ongoing debates are public relations, political pressure groups, media blitzes (witness Generation Rescue's notorious full-page newspaper ad or, most recently, the United Methodist Church-Women's Division Simpsonwood Rally to be held next week), and tort litigation. And one battleground of choice is the medical journal.

The value of medical journals lie in their mission of "informing clinical practice and maintaining standards for how rigorous clinical research ought to be conducted." (from Journalistic Malpractice, Gottlieb). In other words, commonly accepted standards are assumed to be in place, so that when one reads information in a journal of science, it can be safely assumed that the information has been objectively and critically reviewed by a panel of expert peers. Since the peers are doing the "heavy lifting" in terms of critiquing the methodology and conclusions, the reader (and eventual applicator of findings) can "trust" that the information is good.

But wait! Even this vehicle is utilized by the mercury militia in their efforts to promulgate the ongoing, and harmful, myth about childhood vaccines and autism. An excellent description of the types of journals the maverick researchers who play in this sandbox subscribe to is found here. This article by Kathleen Seidel illustrates that lowest of the low in medical journals - JAPandS (Journal of American Physicians and Surgeons). This journal makes no bones about its position on vaccines, stating on its website (excerpted from Neurodiversity Weblog, referenced above):

"AAPS opposes “mandated vaccination,” calls for its members to
“insist upon truly informed consent for the use of vaccines,” persistently
questions the safety and efficacy of immunization to prevent infectious
diseases, and offers dire scenarios of supposed threats posed to children by
vaccination requirements for public school entry."

So, basically, the editors have taken the position that they intend on publishing research that conforms to this standard, reality be damned. This is where one can look to find the research of such doctors as Jeffrey Bradstreet or the Geiers (well, at least the senior Geier is a doctor).

In contrast, the Gottlieb piece is referring to to the New England Journal of Medicine (sister publication to The Lancet), known as a reliable, stand-up publication with strong ethical fiber. Gottlieb's article focuses mainly on last week's fiasco involving misleading conclusions published in the NEJM regarding the diabetes drug Avandia. It highlights the point that, even in the best ethical climate, politicization can and will frequently occur. It follows that in an environment such as JAPandS, editorial bias is almost assured.

One interesting aspect of this article is its discussion of drug-safety testing conducted by the FDA, which is a primary target of mercury militia spite and ridicule. In Gottlieb's words:

"When it comes to the issue du jour, drug safety, no description of
medical research in a medical journal comes close to the detail level or
scrutiny imposed by the FDA on study results before approval."
This statement jibes with a conversation I had a while back with a friend of mine who is a clinical trial director for a pharmaceutical testing company. I explained to her the theories advanced by those who believe in the whole FDA/CDC/Thimerosal conspiracy. She was astounded that anyone could believe that such a coverup was even possible. As she explained, drug testing and approval involves hundreds, sometimes thousands of people, and extremely rigorous standards of testing. If even one person of these hundreds decided to blow the whistle, the proverbial game would be over for any conspiracy.

Yet, as has been shown time and time again, when the radical views of the mercury militia are contrasted to virtually any mainstream standard of epidemiology, biology, or even logic, the folly of their position is exposed. Of course, whenever the slippery supporters of this so-called theory come close to having a showdown with reality, they can (and will) easily reinvent their positions. And therefore the debate rages on and on and on, ad nauseum.

Sunday, May 27, 2007


This is a partial list of some things that I did today, or that happened to me today. Everything I put on this list is true.

Today I added blueberries to my cereal to give it a little extra 'pop', as well as some antioxidant power.
Today I encouraged my son Jason to swim "overarm" so he could successfully race his brother (armed with a floatie) to the end of the pool.
Today I filled my wife's mini-van with gas to the tune of around $40. It was only a half-tank.
Today I fed my baby boy his bottle while parked in a box-store parking lot, the a/c running, the kids in the store with their Mom, listening on the radio to Michael Savage talk about the new immigration bill passed by the U.S. Senate on AM 760.
Today I fed an Australian Lorakeet sweet nectar while it was perched on my extended hand.
Today I considered the fact that my autistic son may find his joy in working with animals, and may not.
Today I ate a Tangelo, fresh off the tree. Next week maybe some peaches will be ready.
Today I realized that I have spent over 3000 days with my wife, and just how lucky of a man I am.
Today I play-acted - using action figures - Diego (Dora's cousin) hang-gliding from a glacier to save a Sloth who was stranded on a mountain, and drove him off to safety in a dogsled pulled by a dolphin. What the hell am I teaching my kids?
Today I watched my dog - a black lab tipping the scales at over 100 lbs. - sitting in a patch of wispy pink flowers and lovingly savoring a fresh avocado that had fallen off a tree. How I wish I had the camera at that moment.
Today I grew angry - yes, actually became angry (mildly, as I have a very long temper) at my son Colin for crying too much. Colin is under 5 months old. I should be clubbed for that particular emotion at that particular time.
Today I met a one-eyed African antelope, who chose not to shun me even though I had no food pellets to offer him. He also patiently stood while my son Jason petted him roughly.
Today I drove almost 100 miles.
Today I realized - not for the first time - that my son Tyler's emotional enthusiasm makes him as endearing as it does frustrating. That kid is a handful!
Today one of my sons fed ice cream to another one.
Today I watched 1-1/2 episodes of a great sitcom called Scrubs, and thoroughly enjoyed every hilarious minute of it.
Today Tyler chose a Fox (which was actually a Lemur) and Jason chose a Rhinoceros. This is no indication of personality type - it was just random selection.
Today I had a delicious, warm quesadilla of fresh Cotija cheese with roasted Jalapeno peppers, accompanied by sweet corn cake and pork carnitas, prepared Michoacan-style.
Today I read a passage from a book from a wonderful author. It said,"Love is only embarrassing to those who cannot love." I immediately wanted to grab my wife and kids, pull them into a town square (any town will do) and declare my undying love for them. But they are asleep. Maybe tomorrow.
Today I enjoyed that special sensation of chilly night air caressing my mildly sunburnt cheeks. I love that.
Today Jason said the following to just about anyone he met: "What's your name? I'm Jason. I'm a boy." Have any words sounded sweeter? I don't think so. Especially when a little over a year ago we did not know if Jason would be able to speak.
Today I realized that blogging is tremendously draining on one's imagination and creative furnace, and I have new-found respect for those I have read over the past couple of years.
Today I realized that my life is moving forward at a hasty pace, and there is little I can do to stop it, much less slow it down. Therefore, I am going to go along for the ride and try to make sure that I and my loved ones arrive at the end in the best possible condition.

All in a Dad's day's work.

Wednesday, May 23, 2007

The Forum

It has been said that strength lies in community. And so it is with the online autism community.
Online can be found any number of media in which autistic individuals, professionals who work with autistic people, and parents of autistic children can go to for information, conversation, debate, humor, support, and sharing. Those of us in the world today are the beneficiaries of what still seems to me to be amazing technology that facilitates this communication.
And each "movement", as it were, has its leaders. A man who I view as a leader in the community of autism acceptance is Kevin Leitch. Kev has been a visionary in defining formats for discussion online about all things related to autism, and one of his most recent efforts has to be considered one of his best. I am referring to the Autism Parents' Forum.

Before I go any further in describing the forum, I must also give accolades to another leader in the autism community - Estee. Estee made the APF possible by dedicating space on the TAAP server. Thanks, Estee! And readers - please take the time to look at Estee's blog and The Autism Acceptance Project's website - they are wonderful.

Back to the Forum. It is divided up into numerous topics, including areas of discussion such as education, current media that focuses on autism, "Ask Autistic People", and medical issues, to name a few.
Want to discuss Home Education? Look here.
Care to talk about something clever, cute, or funny your child has done or said? Check this thread out.
Would you like to discuss a recent news article on autism? Post comments here and see who joins you for discussion.
Some of us proud parents just want to post a picture of our adorable child. That's what the gallery is for (members only!).
Want to talk about a cure for your child's autism? Then find another place, because the Forum is not geared towards this type of discussion.

After 1123 posts to date, there has yet to be found any rancorous debate on the APF. It was founded by Kev to be a "safe haven" for positive, productive discussion to the benefit of all autistic individuals in society - and to benefit parents who are more worried about their children having a positive outcome in life than whether or not they are autistic. Myself and two wonderful ladies - Sharon in Ireland and Bullet in England - moderate the forum, and will strive to maintain a positive, productive environment in which comfortable discussion of many topics can flourish.

Looking forward is this bit of good news. Having successfully established the Forum, Kev's next ventures include the Autism Parents Hippodrome (where parents race wild-eyed stallions on an oval track - wagers are welcome) and the Autism Parents Coliseum (where parents pit their gladatorial skills against one another in battles to the death).

Wednesday, May 16, 2007

Pushing and Pulling

This post is dedicated to the several people in my life who are about to, have recently, or might soon bring a baby into the world. For those of you who are reading this who are "veterans", your knowing grin will suffice as a reaction.

Anticipating parenthood consists of analyzing anecdotes, predicting sleep deprivation, planning for perfection, barely suppressed joy, and fear of the unknown. Of course, this does not capture all of the tremendous range of emotions one experiences prior to inviting a new life to join your family and, yes, the world, but it covers a few major points.
Experiencing parenthood is another thing altogether. In the first month or two, you realize that anecdotal advice only works with other people's children - not yours. You realize that the generalized fear of sleep deprivation is a pale reflection of the real thing. By around 6 months, all your plans to be the "perfect" parent in every way have evaporated more quickly than your diaper budget has. Your barely suppressed joy has blossomed into full elation (especially since baby's first smile). And your fear of the unknown has simply shifted forward, always staying about 2-3 weeks ahead of wherever you and baby are at this exact moment. Welcome to parenthood.
Now I will summarize for you what, in my experience, is a barely adequate encapsulation of the next few years of parenting. Keep in mind two things: My oldest son is 5-1/2 years old (288 weeks, or 66 months for those of you who have young enough children to still think in terms of weeks or months), and he is also autistic. That never figured into the pre-parental plans, but there it is anyway! The age of my children (and therefore the experiences I have had) and the fact that I parent a child with atypical needs (and therefore the experiences I have had) color my view of parenting. Edit these biases out as you see fit.
My summary consists of the following two words: Pushing and Pulling. I have found that parenting consists largely of these two acts. Both physically and metaphysically, literally and figuratively, actually and metaphorically, a hell of a lot of pushing and pulling goes on in our household each and every day.
You pull the kids with you as you do "parent"-type things (like grocery shopping). You push them to eat things they don't want to. You pull them along to school. You push them to realize their potential - even if its only to speak a word or to create a collage of their favorite things. You pull them away from the TV to see a rarely-glimpsed Hummingbird Moth perched on a wall (ooooh, aaaaah).
They do some pulling and pushing of their own. They pull you out of melancholy thoughts of a difficult day by proposing a lively game of "Daddy Burrito" (don't ask...). They push your otherwise-stoic demeanor into fits of near-hysteria over such things as spilling milk on the keyboard or seeing how much water they can splash outside the bathtub.
They push your limits of patience while pulling you into a higher state of tolerance. You pull their little attitudes towards discipline while pushing their inquisitive minds towards ... further inquisition.
So, like champions of tug-of-war and sumo wrestling, we push and pull our way through the process of parenting.

Monday, May 14, 2007


There are many "beaten paths" in the realm of the Autism blogosphere. One path that I have found to be only rarely taken is the one that discusses the delicate balancing act performed by parents between having a successful career and having a happy family. These terms, in some minds, are mutually exclusive. To other minds, they are akin to necessity. In mine, well ... let's just say they do not conform to traditional paradigms.
I have, by many definitions, a "successful" career. I am pleased and relieved by this. If I had to pick a word (which I don't, but for the sake of argument...), I would settle on 'fortunate' as the best one to describe my 13 years in the floral industry. I am the beneficiary, the porter, the trustee, the caretaker, and the workhorse (mind you, a workhorse is only 1/2 species removed from an Ass) of the Family Business. Our business procures and distributes fresh flowers to a very diverse customer base throughout North America. Our pleasure and pain lie in dealing with a beautiful, fickle, fragrant, perishable, emotion-driven, price-sensitive, color-saturated, margin-bereft product that would just as soon expire in the cooler as flourish on someone's dining room table. Oh, the drama!
So anyway, I wake up each morning (just like you), thoughts brewing (just like yours) on the various topics of my own personal life and its inevitable clash with my professional life (schedules, trips out of town, preschool graduation ceremonies that clumsily overlap important meetings, a complete breakdown in personal energy and motivation coinciding with a complete breakdown of one of our trucks' transmissions). And, like all of you reading this, I strap on my boots (or whatever footwear applies in your circumstance) and march out to work.
Now I would like to head off this diatribe by quoting a passage I just read this evening in a book by my Very Favorite Author. The Very Favorite Author is Mark Helprin. If anyone reading this blog has not yet discovered the pure joy of reading this man's literature, I suggest that you run - run! - to the nearest bookstore and purchase any one of his books. They are so damned good, they will forever recalibrate your opinion of what you thought you knew was good.
The setting: An old man - late 70's - and a young man - 17 - by happenstance end up walking together 70 km from one spot in Italy to another over the course of two long days. The old man, full of wisdom, is just getting the measure of the young man in this passage:

"I'm going to tell you something that you may or may not understand, and I want
you to memorize it and say it to yourself now and then, until, someday, you do
"Is it long?"
"Go ahead."
"Nicolo," Alessandro said.
"Nicolo," Nicolo repeated.
"The spark of life is not gain."
"The spark of life is not gain."
"Nor is it luxury."
"Nor is it luxury."
"The spark of life is movement."
"And furthermore..."
"If you really want to enjoy life, you must work quietly and humbly to realize your delusions of grandeur."
"But I don't have them."
"Start to have them."

Now I'm not going to sit here and proclaim that I have gathered every hidden meaning and potential nuance contained in this short passage, but I will say this: To me, it means that no matter what you thought your goals were when you started the journey (read: career, parenting, etc), the very fact that the goal has transformed to something else while you thought you were watching intently is what, by extension, gives meaning to our day-to-day existence. I know as well as you do that to wake up, tighten the proverbial bootstraps, and head out for another day's work is not easy, but it is in our commitment (not the "gain", not the "luxury") that we find our color, our movement, our love.
And therein lies the balance between career and family. It's not about reaching a career goal - how could it be, since the goal changes more quickly than we can conceive of it for even the briefest moment? The endpoint changes (movement), the value of achievement changes relative to immediate concerns (color), the joy experienced from the process shifts from topic to topic (love). Too much gain on one side, too much luxury on the other, and the balance is lost between the two. Having a child with special needs, for those of us who are so destined, means that our scales have more weight on both sides - the reward side, and the challenge side, and the balance struck between the two has been - at least in my case - just perfect.

Saturday, May 12, 2007

Best-Case Scenario

Yesterday, we completed the two-month process of establishing Jason's IEP for the upcoming school year.
I will make a bold statement here, knowing that many factors can effect the outcome of this IEP over a year's time: Jason has ended up with a best-case scenario.

Let this process, approached in a spirit of cooperation by the school staff and administration as well as my wife and I, serve as a guide for how these things should unfold.

It started a couple of months ago, with an IEP meeting intended to set the IEP goals. While my wife and I were urgently wanting to move on to the discussion of placement (mainstream or Special Ed, classroom aide involvement, etc), the administrator who headed the process would not allow the meeting to broach that topic. It was explained carefully and concisely that the content of that meeting was to consist of just one thing: IEP goals. We protested this, based on the idea that goals cannot be accurately set without knowing what learning environment our son was to be placed in. Instead of derailing the entire meeting, though, we simply asked that our objection be recorded in the IEP notes and allowed the meeting to move forward productively.
Numerous goals were recommended, discussed, and agreed upon. We left that meeting knowing that the goals were good, but not knowing how they would be achieved.

We then got to work on determining how best to make a case that Jason can succeed in a mainstream classroom with the help of a full-time Classroom Aide trained in topics related to Autism. Here is how the logic flows:

Jason, under LRE (Least Restrictive Environment), has the right to be educated in a mainstream classroom if he is academically and behaviorally up to the task. We know that he is.
Jason, once "accepted" into the mainstream classroom, must be provided whatever learning supports he requires to successfully complete the academic requirements of the grade level (in this case, Kindergarten).
The district is required, under FAPE (Free and Appropriate Education), to provide Jason the minimum level of service required for the "success" criterion (completing the grade-level requirements) - no more, no less.
Thus, the burden was on us to "prove" to the school that Jason needed SLT and OT, and most importantly (and expensive to the district) a full-time aide. The district had already stated that Jason should/would continue to receive SLT and OT services. This left the all-important aide issue.
We did this by focusing on three areas where Jason needs support:
  1. Meeting his IEP goals: Since the goals had already been agreed upon by the IEP Team, we demonstrated that the goals could not be met without the support of an aide.
  2. Successfully Completing Curriculum: Since Jason requires such basic supports a help gripping a pencil properly, and responding to multi-step verbal instructions, he will need ongoing support from an aide to complete his classwork.
  3. Succeeding in Classroom Behavior: Jason is not the type to spontaneously engage his peers, nor is he likely to easily adapt to classroom rules and expected behaviors. Oh, sure he can do it, but not without some help along the way. For this purpose, and aide is also required.

Having listened to our case, the district agreed that our submitted reasons were sufficient justification to hire (or assign) a full-time Classroom Aide for Jason next year. Without our working knowledge of the IEP process and its associated legal guidelines and student rights, without a proactive and student-oriented school staff and administration, without full cooperation among everyone involved in the process, this outcome could not have been achieved - at least not without much rancor and debate.

Special thanks go to Grandma and Poppa for watching the boys and taking Jason to his horseback riding session while we conducted the meeting.

I must end this post now, as my wife and I need to go do the "IEP Victory Dance".

Monday, May 7, 2007

Mark Twain on Autism II: It's Personal

In my last post, I offered part one of a two-part interview with the amazing wordsmith, Mark Twain. What follows is part two:

Mr. Twain, I see that you have more than just a cursory familiarity with some of the science behind current knowledge of autism causation and treatment. But I would like to diverge from that topic for a while and discuss what autism is really all about. This is where your opinions as a wise and venerable ethicist and humanist are so valuable.
When I first learned that my oldest son was autistic, I was, well, crushed. I well remember the ensuing days of scrambling for answers, for understanding. I have been quoted as saying that I will always regret my initial response, in that I failed to understand that the diagnosis did not rob me of the "perfect" son, but instead that it had rewarded me with a son who is perfect - in his own ways. This realization has brought much joy and relief into what was a difficult situation.

Every man is a suffering-machine and a happiness-machine combined. The two
functions work together harmoniously, with a fine and delicate precision, on the
give-and-take principle. For every happiness turned out in the one department
the other stands ready to modify it with a sorrow or a pain--maybe a

But I still must acknowledge my sorrow, as it were. Though I have come to learn otherwise, it was as real and intense a feeling as I have ever known.

Grief can take care of itself, but to get full value of a joy you must have
somebody to divide it with.

Yes, and that's exactly what happened. Not only my wife and I , but also my son's wonderful grandparents kind of banded together at the outset and determined that we would, no matter what, provide for his happiness. At the time, we weren't quite sure how to judge what form that happiness would take.

You cannot depend on your judgment when your imagination is out of

Thank you for iterating the problem so well. I, at that point, had no "imagination" as to what Jason's outcome might look like. And therefore I did not know how to approach it. So there we were, trying to connect with Jason, and poring over all available literature and pursuing the list of resources that had been given to us at Children's Hospital at the time of diagnosis. Wow, what a mental exercise it was to try to accommodate all of this new information.

When you fish for love, bait with your heart, not your brain.

With all due respect, that is easier said than done, Mr. Twain! But I see your point. And very soon, as we began to understand the nature of Jason's ways of interacting with the world - and how they differed from ours - we began to set aside our initial prejudices and see Jason for who he really was all along.

When we do not know a person--and also when we do--we have to judge his size by
the size and nature of his achievements, as compared with the achievements of
others in his special line of business--there is no other way.
His achievements were indeed noticeable and significant. We began to venture out with him more often, we learned to grow thick-skinned against the inevitable scorn that came from having a beautiful, physically healthy child who was apparently unruly and undisciplined to the unacquainted observer.

Each man is afraid of his neighbor's disapproval--a thing which, to the
general run of the human race, is more dreaded than wolves and death.

Yes, well, as any parent of a young autistic child will tell you - that is a hurdle which must soon be overcome if the parents are to fulfill their role of exposing their child to fun and interesting experiences in the community. And, with all due respect, I don't believe your statement holds true for all people, perhaps most especially autistic people who may not be as "honed in" on gaining the approval of their social contacts. At least in the case of my son, just spending some time by himself and pursuing a favorite hobby makes him, well...

...as happy as a dog with two tails.

Well said, though he probably won't express his happiness quite so emphatically. I still do worry about his future, though. Well, if the truth be known, I worry just as much about my other two boys, but in Jason's case the worries are more ... well ... targeted. Things such as bullying. Things like gaining a fulfilling job as an adult. Things like developing close friendships that will help him through the harder times in his life. Well, time will tell how each of these circumstances bear out, but we believe that if self-esteem and self-respect are in place, everything else is eminently possible. And that, therefore, will be the focus of our goals for our son.

We can secure other people's approval if we do right and try hard; but our
own is worth a hundred of it, and no way has been found out of securing

I see you do understand what I mean by this, then. And also you see my ultimate challenge as a father to this great kid.
Well, Mr. Twain, as opposed to an interview, this seems to have turned into somewhat of a dad-therapy session. Thank you for offering your time-tested insights, and I would like to offer you the final word on this broad subject.

People are different. And it is the best way.

Friday, May 4, 2007

Mark Twain on Autism: The Science

I recently sat down for the first in a two-part interview I plan to report on here on this ‘blog. The subject of my interview was world-renowned autism expert, quotesmith, and humanist Samuel Clemens, a.k.a. Mark Twain.
We covered several major topics relating to autism. Today’s post will deal with one important area - the science. Causation and treatment are the main topics. What follows is a transcript of the interview.

Thank you so much for agreeing to this interview, Mr. Twain. As your literary record shows, you have been quite a significant contributor in many areas of knowledge. Today I would like to tap into your expertise on a particular subject – the science of autism. For the benefit of the reader, lets start with some basic questions that will establish your position on some of the more controversial aspects of this topic.
Okay, in looking at the issue in an overall sense, there seems to be a body of evidence that is driving a small portion of our medical, research, and parents’ community to believe there exists a legitimate base of studies that would support the hypothesis that Mercury (in particular that contained in Thimerosal) can cause Autism Disorder.

“It was just a snow-flurry on a warm day: every flake was distinct and perfect,
but they melted before you could grab enough to make a ball out of them.”

I think I see your point – that the some of the research stands well enough alone, but that the sum of the results does not necessarily point to causation.

“You can find in a text whatever you bring, if you will stand between it and the
mirror of your imagination.”

Imagination? I’m not sure I would brush it off quite so easily. After all, these are respected scientists and researchers who have publicly proclaimed that they “know” this hypothesis to be true!

“Between believing a thing and thinking you know is only a small step and
quickly taken.”

But, Mr. Twain, of course you realize that the issues involved in establishing causation are incredibly complex, and certainly this hypothesis may stand as at least a starting point to really understanding what causes autism.

“Some things you can't find out; but you will never know you can't by guessing
and supposing; no, you have to be patient and go on experimenting until you find
out that you can't find out. And it is delightful to have it that way, it makes
the world so interesting. If there wasn't anything to find out, it would be
dull. Even trying to find out and not finding out is just as interesting as
trying to find out and finding out, and I don't know but more so.”

I understand that, but I think what the folks who pursue this hypothesis are really trying to do is determine the cause so that a cure can soon follow. Think about how miraculous that would be!

“The difference between a Miracle and a Fact is exactly the difference between a
mermaid and seal. It could not be expressed better.”

I apologize if I have overstepped my boundaries on this, Mr. Twain. I did not realize you felt so strongly on this issue. So, to clarify, it has been your opinion that the hypothesis that Mercury causes autism has no validity?

“It was not my opinion; I think there is no sense in forming an opinion when
there is no evidence to form it on. If you build a person without any bones in
him he may look fair enough to the eye, but he will be limber and cannot stand
up; and I consider that evidence is the bones of an opinion.”
Fair enough. Now, aside from the strict Mercury adherents in the causation/treatment debate, there are numerous other “players”. Perhaps we could branch off into discussing some of them. Since it is a current event, perhaps we could begin with a brief discussion of Generation Rescue and their new website. Until now, this organization has always proclaimed, loudly and clearly, that autism is a misdiagnosis for mercury poisoning. Now it seems they have broadened their scope to include general environmental insults, non-specific viruses, and non-specific bacteria. What is your initial reaction to this change in the message from Generation Rescue?

“You are a coward when you even seem to have backed down from a thing you
openly set out to do.”

Strong words, Mr. Twain! Though I understand you have a bit of a past with GR. Did you not once send them a letter in response to their inquiry on the efficacy of one of their recommended treatments? If so, what did the letter say?

“Dear Sir (or Madam):--I try every remedy sent to me. I am now on No. 67. Yours
is 2,653. I am looking forward to its beneficial results.”

On the subject of letters, I also seem to recall you had sent one to a Mr. Arthur Allen prior to his public debate with one Mr. David Kirby, author of Evidence of Harm. In it, you exhorted Mr. Allen to swallow his disbelief that Mr. Kirby could actually stand up before a group of scientists and proclaim that his mercury/autism theory had validity. Could you recount for us the contents of that partcular letter?

“My Dear Sir:
But you are proceeding upon the superstition that Moral
Courage and a Hankering to Learn the Truth are ingredients in the human being's
makeup. Your premises being wild and foolish, you naturally and properly get
wild and foolish results. If you will now reform, and in future proceed upon the
sane and unchallengeable hypothesis that those two ingredients are on vacation
in our race, and have been from the start, you will be able to account for some
things which seem to puzzle you now.
Sincerely yours,
Ah, yes. But, after the debate, you must have been at least a bit impressed by Mr. Kirby’s deft damage control since the 2006 CDDS figures put the last nail in the coffin of the mercury aficionados just one day prior to its occurrence. If you will recall, he immediately shifted his argument from vaccines being the source of mercury to things such as coal-burning factories in China and crematoriums in the U.S. I believe he even had some figures to back his argument up.

“Figures often beguile me, particularly when I have the arranging of them
myself; in which case the remark attributed to Disraeli would often apply with
justice and force: "There are three kinds of lies: lies, damned lies and

My last question for this segment of the interview is this, Mr. Twain. There is a movement in the medical community known as DAN! These doctors (and non-doctors) follow the tenets of some of the theories you have so unflinchingly discredited throughout this interview. What advice do you have for parents who are considering working with a DAN! Doctor to “cure” their child’s autism?

“Medicine has its office, it does its share and does it well; but without hope
back of it, its forces are crippled and only the physician's verdict can create
that hope when the facts refuse to create it.”

As always, a very profound insight Mr. Twain.

This concludes Part 1 of this 2 part interview with esteemed humanist Mark Twain. I hope you will join us for Part 2 – Mark Twain on the Autism: The People

Tuesday, May 1, 2007

Metamorphosis: Blogging Against Disablism

dig·ni·ty (dĭg'nĭ-tē) n. pl. dig·ni·ties
1. The quality or state of being worthy of esteem or respect.
2. Inherent nobility and worth

I have come to learn that this is what its all about. It wasn't always this way for me.
A little over 2 years ago, my oldest son was diagnosed with autism. At first, this was a tremendously wrenching event for my wife and I. Until that point, I had never come face-to-face with disability. Aside from the occasional encounter with a disabled person, I lived in a disability-free world. I was a disablist by default, without even knowing it. I had never even taken a bare moment of my life to consider disability seriously. Prior to judging me harshly for this admission, read on. It gets worse, and it also gets better.
On the drive down to Children's Hospital for the developmental evaluation recommended by our pediatrician and the speech therapist, I was accompanied by my just-turned-three year old son. On the drive home, a mere 5 hours later, the spectre of Autism was strapped in the carseat behind me; silent, brooding, thieving the child my wife and I had conceived. Around me, on the busy highways of Southern California, thousands of people were going about their business on a typical sunny day. Meanwhile, I had been given the herculean task of raising a "disabled" son.
And so began my metamorphosis. Little did I know at that time, in January of 2005, that my eyes would be opened to a world that had existed around me all my life, immediately within my grasp, but that I had not been aware of. The metamorphosis did not begin immediately. The initial shock was quickly supplanted by a predictable episode titled "OhMyGodWhatDo WeDoNow!" We filed with the state for services. We contracted with an agency for behavioral therapy. My parents immediately became involved in trying to help. We were referred to friends of family who had experience with autism. On and on it went. We were reacting to the autism, we believed that our family had the power to defeat this thing that had infiltrated our heretofore "innocent" lives. This went on for months, and I do not regret what was accomplished in terms of Jason's well-being (he is a very happy child who is thriving in so many ways) But what I did not realize was happening concurrently, and was most profound in framing all of our future endeavors regarding my autistic son, was that I was undergoing a metamorphosis. And here is the epiphany my wife and I had that led to this awareness:
My son was born possessing dignity. He possesses "the quality or state of being worthy of esteem or respect". Autism did not change this. I, in my ignorance, allowed my perception of him to change in the few short moments it took for a psychologist to utter the words "diagnosis: autism". My son did not change in that moment - I did. And I will live my life regretting my brief lapse into self-pity. I momentarily robbed him of his dignity. Thank goodness I have recovered, and returned his dignity to him. Can you imagine the devastation I could have caused him had I not changed my views? He is a real person, and he deserves a father who appreciates and respects him for who he is. I grew up under the guidance of two parents who stubbornly and openly valued all I had to offer, no matter my shortcomings, and it is chilling when I realize just how close I came, however briefly, to robbing my own son of that same benefit. My metamorphosis in my views of "ability" vs. "disability" is one of the most profoundly positive things that has happened to me. And to whom do I owe the credit? To my son, Jason, who will someday understand that he has done as much to raise his father as I will ever do to raise my son.
Prologue: On Friday last, my wife and I took the boys to the local pizza place. As we were fighting the dinner table battles commonly found in a family with two young boys and an infant ("No, pepperoni is not a frisbee!" or "Sometimes lemonade is pink, please drink it anyway" or "The baby is too little to eat a meatball"), in walks a man with his wife. This man was missing both his forearms - in their place he had prosthetic limbs. What was far more noticeable about him was his booming laugh and big smile. I do not believe he knew anyone in the restaurant, yet he stopped to chat with a few people on his way to the counter. A few years ago, I would remember the limbs, not the laugh. I would have unintentionally robbed him of his dignity before he ever had a chance to say "Hello" to me.
This post is my submission to join the effort for Blogging Against Disablism Day. Thank you to all my fellow bloggers for helping to protect the dignity of my son.