Thursday, September 27, 2007

Juxtanother Juxtaposition

I popped on over to the Rescue Post today to see if the rapturous self-actualizing had settled down for a bit after Jenny McCarthy's whirlwind book tour of the U.S. media.

I immediately noticed another Juxtaposition. In case you missed my last post, it was a brief commentary on the interesting contrast between the way the autism research, political action, and parent communities have reacted to this past few weeks' news and media as relates to autism.
The two major issues can be boiled down to:
(1) a model/actress/mother of an autistic son has stated that she believes that her son's vaccinations caused him to become autistic and that the treatment she followed as a result of knowing the cause of his being autistic has caused him to no longer be autistic.
(2) an expert panel assembled by the CDC, including one powerful anti-mercury member who was 'in step' with all other experts and contributed to the design and methodology of the study, published a study that concluded that mercury body burdens, as measured by Thimerosal uptake, has not resulted in significant neurological abnormalities in a specific age cohort.

Gosh, what's an open-minded, clear-thinking person to do? Believe Ms. McCarthy, or believe the CDC's panel of experts, experts who represent a range of backgrounds and areas of expertise?

(To be fair, this argument is not all that simple. After all, the MMR or - as Ms. McCarthy refers to it - "The Autism Shot" does not contain and has never contained Thimerosal.)

So, now that you clear-headed and truth-oriented people out there are honed in on the issue, here's today's Juxtaposition, courtesy of the Rescue Post!

{Click this link}

Did you see it? Right there on the front page. A post by J.B. Handley, a truly lovely guy who considers autistic folks to be 'trailer-dwelling coo-coos' and once said to my friend Kev Leitch, "If we were on a rugby pitch, Kev, I'd put my boot in your eye and twist…" about how wonderful a spokesmodel Ms. McCarthy is for their cause:
Jenny McCarthy Missile Sinks USS Gerberding
by JB Handley
"I’m not sure why CDC employees wear sailor suits, but after Jenny McCarthy’s two week talk show romp, they’ll be bailing water out of battleship CDC for months to come .....
Through Jenny’s courage ... a national debate has emerged that is already forcing major change .....
It’s hard to fathom how many children Jenny has already saved."

Got the picture? Okay. Let's see how the same group reacts to the published, peer-reviewed study that included uber-mercury mom Sallie Bernard.
By Anne McElroy Dachel

"The fact the CDC has an obvious bias in showing that vaccines haven't damaged hundreds of thousands of children because they also run the vaccine program, isn't noted. .....
We are to believe the endless pharmaceutical advertising dollars that ABC, NBC, and CBS News get along with the New England Journal of Medicine and WebMD hasn't possibly influenced their reporting .....
Maybe someone at ABC, NBC, or CBS NEWS should tell us why we should be so confident that it's safe to inject mercury into children when the CDC can never show us the one test that matters. .....
What the news networks don't tell us is that maybe all these endless population studies are damage control--a desperate attempt, after the fact, to disprove a scientific truth ....."

Ahhh, now one sees it. The only rebuttal to be made by the mercury crusaders is based on conspiracy theory innuendeo.

And thus we have a second Juxtaposition.

Summary: When we place the two messages originating directly from base camp of the vaccines-cause-autism contingent side-by-side, it is plainly obvious that we are being told to ignore experienced, serious researchers and instead to follow the advice of a Hollywood actress/model-turned-Mom.

Wednesday, September 26, 2007


I have been following the vaccine/autism debate since around January 2004. This was the month that my oldest son was diagnosed with Autism Disorder. Upon initial exposure to the concept, I had no significant reaction. I was too wrapped up in trying to figure out an effective course of action - a feeling I have in common with virtually every parent of an autistic child. A few months later, after the initial phases of adjustment to our family's new circumstance, I began to hear more about the ongoing debate.

The debate began to matter to me when I mentally framed it in terms of how it may affect treatment decisions we would make for our son. As a result, I went off in search of knowledge. To make a long story short, a story that includes stops at EOHarm Yahoo! group, at PubMed, at LeftBrain/RightBrain, and at many points in between, I eventually arrived at my conclusion. And this was a conclusion that was not to be taken lightly, as I had another baby on the way and decisions about vaccination were imminent.

As a result of my evaluation of the available evidence, I unwittingly became a member of one of the autism community's 'camps'. This camp, this school of thought, believes that autism is not resultant from vaccinations, that an autism 'epidemic' has not been convincingly shown to have occurred, that an autistic family member is not a blight upon a family, that many autistic people show significant improvement over the course of their life in the absence of 'miracle cures', that those individuals who are most profoundly affected by autism are to be valued, supported, and are no less able to understand if we are treating them with dignity and respect than their "higher on the spectrum" brethren, and much more.

Much can be said, in fact has already been said, about the (mis)behavior of many people who populate the camp on the other side of the vaccine/mercury debate. Their behaviors have been reprehensible in many cases - read just this one letter for some good examples of what I am referring to in terms of attitude towards autism and autistic people. Anyone has looked in on the EOHarm group in the recent past can vouch for the ongoing spite and malice that pervades their routine communications.

And so we come to the Juxtaposition. Juxtaposition is defined as ... "an act or instance of placing close together or side by side, esp. for comparison or contrast. " And this happened over the last week or so in the autism community.

Both camps feel vindicated in their views as a result of this juxtaposition.

The "Autism is mercury poisoning" camp (oh, wait, did they already change that message in response to a lack of data to support their position? Or did they commission their own phone survey in an attempt to support their position?) found validation last week and this week in the ongoing book tour of Jenny McCarthy. Jenny, as anyone who is reading this has got to know by now, is promoting a book in which she describes how: she believes that the MMR shot (yes, I know MMR does not contain Thimerosal) caused her son's autism and that various biomedical treatments, including the non-dangerous GFCF diet, have "rescued" her son from autism. 'Nuff said on Jenny, as plenty has been discussed elsewhere on the internet.

The other camp, my camp, the one who feels that the weight of scientific evidence exonerates mercury in childhood vaccines as a factor in Autism Disorder, also received some validation this week. Today, a study published in the New England Journal of Medicine concluded that

"...Our study does not support a causal association between early exposure
to mercury from thimerosal-containing vaccines and immune globulins and deficits
in neuropsychological functioning at the age of 7 to 10 years. "

Don't take my word for it, read the abstract yourself. The most obvious issue that the Mercury Militia will latch onto with this study is that it

"...did not assess autism-spectrum disorders."

And this criticism, as relates to the debate, is valid to a degree. However, the neuropsychological metrics that they assessed clearly fall within the scope of what are recognized to be traits involved in the Autism Disorder diagnosis.

"The outcome measures included speech and language indexes, verbal memory,
achievement, fine motor coordination, visuospatial ability, attention and
executive-functioning tasks, behavior regulation, tics, and general
intellectual functioning (Table C of the Supplementary Appendix). Measures of attention, hyperactivity, and executive functioning were based on reports from parents and teachers."

I'd like to direct you to this article by one Dr. Gilbert Ross. In the article, titled Vaccine Litigation over Mercury and Autism Puts Kids in Jeopardy, Dr. Ross promotes the view that not only have vaccines been exonerated - again! - as a cause of autism and other neurological disorders, but also that the continuing legal debate potentiates the risk of a stoppage in production of vaccines altogether due to legal liability. I think even some fringe anti-vaxxers might agree that this would not be a positive outcome in terms of public health.

The juxtaposition lies in the fact that one side of the debate has been in rapture over the occurrence that a B-list celebrity has taken to the airwaves to promote a book that discusses the author's belief that the MMR vaccine caused her son to become autistic, whilst the other side of the debate has been supported by a well-designed, large scale study that concludes that Thimerosal in childhood vaccines does not correlate with neurological dysfunction by the age range of 7-10. If the Scales of Justice were to weigh both current developments, here's one dad's opinion that the science outweighs the Indigo Mom's specious conclusions.

Saturday, September 22, 2007

Letter to CMS

In my last post, I talked about an email communication we had received from my son's school district regarding possible upcoming rules changes that would affect all school district's ongoing ability to provide transportation services for their special needs students.
I received some good comments on that post, including one from Another Voice that recommended some verbiage to include in any comments to the CMS. Another commenter, Club 166, also recommends submitting comments to your legislators on this topic. It occurs to me one small impact I can have to is to make it a little easier for people to comment to the CMS and their legislators by drafting a sample letter.

If you are a U.S. citizen, please consider commenting to the CMS. If you would like to use this letter, just copy-paste it to a Word document, edit it as you see fit, and follow this link to submit it.


Re: CMS-2287-P

The purpose of this comment is to express concern for the proposed rule changes (CMS-2287-P) that, if adopted, would eliminate schools’ reimbursements for certain services provided to Medicaid-eligible students, with the most immediate effect being the elimination of transportation services to students with IEP's.
As the parent of a child with special needs, I would like to comment that elimination of transportation to and from school would create a hardship for not only my own family, but many thousands of other families as well.
In reading a copy of the proposed regulations, it is clear that one prime motivating factor in making this proposal is to address the problem of excessive expenses to the CMS. The discussion of the regulations clearly implicates school districts' "... improper billing ... for administrative costs and transportation services."
It is unconscionable that the response to alleged fraudulent reporting/claims by the school districts is to eliminate the service altogether. Numerous alternative solutions exist, the most obvious of which is to install safeguards and auditing procedures that would eliminate the possibility of such fraudulent activity taking place in the future, thereby solving the problem while keeping the services intact.
Elimination of these services amounts to an injustice against disabled students throughout the United States of America.


Another Voice has left a comment to this post with several additional officials and their corresponding email addresses to which this letter, or something similar to it, can be submitted. Please do take the time to submit your comments.

Thursday, September 20, 2007

Go to the Back of the Bus!

We received an interesting email from my son's school today:

Regulations Proposed to Eliminate Federal Medicaid Reimbursement to Schools

After years of fighting back the federal government’s threat to eliminate schools’ reimbursements for certain services provided to Medicaid-eligible students, school districts throughout the nation were dealt a severe blow that could have a significant impact on their budgets. On August 31, 2007, the Centers for Medicare and Medicaid Services (CMS) formally released proposed regulations to eliminate reimbursement for Medicaid expenditures for school-based administrative activities and special education transportation services, thus marking the first step in the federal rulemaking process.
The September 7, 2007, Federal Register posting of the proposed regulations (CMS-2287-P ) indicates the proposed rule is estimated to reduce federal Medicaid outlays by $635 million in Fiscal Year (FY) 2009 and by $3.6 billion over the first five years (FY 2009–13). If adopted, California stands to lose more than $130 million annually in federal reimbursements for administrative responsibilities and certain home-to-school transportation services to students with disabilities (See August 18, 2007 Fiscal Report Article entitled, “Fight Continues on Proposed Federal Medicaid Regulations). The proposed rule would become effective October 1, 2008.
The CMS, under the umbrella of the federal Office of Health and Human Services, has consistently argued that the program is fraught with fraud and abuse, citing examples in New York and Michigan . Those claims have been strongly disputed by school agencies in those states. In response, President Bush eliminated the funding in his 2008 Federal Budget, and CMS started developing the regulations. However, the President’s proposed cuts have been rejected by the Democratic Congress, which has supported legislation to tighten up program requirements instead. The battle now moves to Congress; it will need to get language into a “veto-proof” bill to prevent the regulations from being implemented.
The comment period has begun and will end on November 6, 2007. CMS is charged with reviewing the comments and preparing a final rule. California and national education groups are preparing comments for submission and school agencies are also being encouraged to submit comments. Comments can be submitted in one of three ways:
1. Electronically. Submit electronic comments on specific issues in this regulation to Click on the link ‘‘Submit electronic comments on CMS regulations with an open comment period.’’ (Attachments should be in Microsoft Word, WordPerfect, or Excel; however, they prefer Microsoft Word.)
2. By regular mail. Mail written comments (one original and two copies) to the following address ONLY: Centers for Medicare & Medicaid Services, Department of Health and Human Services, Attention: CMS–2287– P, Mail Stop S3–14–22, 7500 Security Boulevard , Baltimore , MD 21244 . Please allow sufficient time for mailed comments to be received before the close of the comment period.
3. By express or overnight mail. Send written comments (one original and two copies) to the following address ONLY: Centers for Medicare & Medicaid Services, Department of Health and Human Services, Attention: CMS–2287–P, Mail Stop S3–14–22, 7500 Security Boulevard , Baltimore , MD 21244 .
A copy of the proposed regulations can be found at:
While doing so in a typically obfuscating way, what this document is saying is simply this: The Federal Government will no longer continue to subsidize school districts' expense of transporting students to and from school.
The original justification for covering the cost of medicaid-eligible (this definition covers many special needs kids) students' school transportation was that, since IDEA dictates that Medicaid must reimburse schools for costs incurred by meeting the requirements of that student's IEP, then transportation costs to and from the location of the school (in this translation, School = Medicaid Provider) are implied to be included in that reimbursement. The result of this is that most special needs students automatically are offered transportation to and from not just their own local school, but also (speaking from personal experience) to any other specialized schools or educational programs that are specified in the IEP.
Different people will draw different conclusions on this whole thing. Here are some of my thoughts:
  • -Students with special needs already have a number of cards stacked against them. Their families do too, in many cases, including financial and time constraints. It seems wrong to me to cut back services for this particualr population.
  • -Is it ultimately the school district's responsiblity to provide transportation for special education students, and they have pawned off that responsibility to the federal government through a Medicaid-based loophole? If so, any anger directed toward CMS for this would be better oriented toward the school districts to begin with.
  • -Notice the wording of the document we received. In quintessential, uber-liberal, teachers-union-backed form, the author implicates the Republican administration as the culprit, and the Democratic congress as the potential savior. Puh-lease - this is not a partisan issue, and if the power roles were reversed then precisely the opposite scenario would prevail. I grow incredibly weary of the insertion of partisan political gamesmanship into issues such as this, when basically the entire government is at fault. It is astounding to me that, considering the taxes collected by the government for just the activities of my one family - including sales tax, vehicle tax, property tax, income tax, captial gains tax, etc, etc, etc - the school district cannot afford to transport one of my three kids back and forth to school. It boggles the mind and offends the intellect. And it transcends political party. And the political discussion would be incomplete if it did not also include the educators' various unions.
  • -If you take the time to read the linked document, you may come away with the feeling, as I did, that the CMS may have a legitimate beef with the way schools are billing Medicaid. It says:
    "CMS has long-standing concerns about improper billing by school districts for
    administrative costs and transportation services. The U.S. Department of
    Health and Human Services Office of the Inspector General and the Government
    Accountability Office have identified these categories of expenses as
    susceptible to widespread fraud and abuse ... In fact, examining
    State-reported expenditure related to schools reveals that, in certain years, a
    number of States' reported school-based administrative expenditures approached
    or even exceeded their reported school-based direct medical service
    expenditures, which is clearly evidence of improper claiming in this area."
    So let me get this straight. Because the school districts improperly (fraudulently) claimed excessive administrative costs (does anyone doubt the truth of this?), we are now facing a situation where transportation could be cut off for special needs kids? My family will work around it if indeed it happens this way - other families may not be as blessed as mine. Other kids have disabilities requiring much more complex and expensive transportation considerations than mine. Other kids may be being raised by a single parent who has work schedule conflicts. Some families may not have the financial means to own a vehicle to get their kid to school (in which case they probably should have waited until better financial times to have a child, but that is a rant for another day). I hope the administrators who robbed the system lose at least one night of sleep over the results of their actions. But its not likely they will.
  • -Is there not a better way to distribute these funds? In other words, any given dollar that is collected from a taxpayer that eventually ends up being spent on Special Ed transportation is passing more desks, obviously, than is necessary. The money, apparently, is going from the Federal general fund to the State general fund, from there to the Medicaid general fund, then to the school district general fund, where it is appropriated to transportation costs. How many pennies are sucked out of each dollar at each step of the way? Is the tax-collected dollar worth, in your estimation, 90 cents of transportation? 43 cents? 7.5 cents? I have no idea, but I'm guessing 7.5 is closest to accurate. If I ran my business like this system is being run, I'd have to close up shop tomorrow.

If there is one thing I love about blogging, it is finding out via comments how many people agree or disagree with me.

Also, please note that the proper means to submit comments are included at the end of the school's email. If you would like to have input on this, this is your chance. The comment period lasts until November 6.

Monday, September 17, 2007

A Simple "I'm Sorry" Will Suffice

I came across a blog entry today that kind of dampened my mood. I am not nearly as deeply involved in autism advocacy issues as some of you are - I tend to leave many of the most serious issues to those who I feel have more credibility than I do in various contexts. However, this particular thing really irritated me and left me with an uneasy feeling.
The perspective I bring in this case is one of a father who wants to see all of his kids have great opportunities in life. Opportunities unspoiled by ignorant or selfish people. I realize that I cannot ultimately control my kids' exposure to things like this, but it still rankles me when I see the type of prejudice and lack of understanding that I just read.

I am referring to the following blog post:

First of all, notice that in this post the author does not actually mention Autism. He refers to a guy who occupied the seat next to him on a flight who was overly absorbed in his Blackberry Device. He uses language such as this:
"Here are several things he did NOT do during the time we were confined together:
Respond to polite observations (”I wonder how long we’re going to be on the ground here”)’;
Get up, even once, to stretch his legs or use the restroom;
Watch a movie or use the personal in-flight entertainment system;
Eat the in-flight meal, although he does have a few hot nuts;
Drink anything except water with a bit of cranberry juice in it. "

In a follow-up post, he initiates the term "Blackberry Autism". Here is the link for that post:

I know nothing about this guy - he may be the nicest, most thoughtful and well-intentioned person in the blogosphere. Based on what I read, which compares "The Guy in Seat 12A" - a Blackberry addict -with an autistic person (not otherwise specified), I am thinking he could use some impetus to stop for a moment and consider the effect his words have on a population to which I suspect he means no direct harm. But it is very inappropriate for him to use his personal (mis)understanding of a real disorder to coin a new phrase.
Let's draw some comparisons. In his list of the passenger's behaviors, he writes that the person did not "Get up, even once, to stretch his legs or use the restroom". But his ensuing post did not use the term "Blackberry Paraplegism." He writes that this guy did not "Watch a movie..." but his ensuing post did not use the term "Blackberry Blindman." If you read his tags, you will notice that he also refers to ADD, Alzheimer's, and Bipolar. It seems like a bit of a pattern is developing, though admittedly I have not taken the time to read those tagged posts.

I have never been an overly Politically Correct kind of guy. I do respect people's desire to be referred to in a certain way, and will adhere to that to the best of my ability, but am most definitely not a "PC" purist by any stretch of the imagination. But I also have a protective streak as relates to my kids. And I think this kind of reference specifically casts autism in a negative light - no talking? no smiling? no response to polite observations? These are textbook prejudices - ones that I myself held just a few years ago.
I encourage anyone reading my words - some of whom may be tempted to give him a piece of your mind, to sit tight for now and refrain from doing so. I have always found that the "let's attack the opposition!" approach creates more hard feelings than good ones. But it would be nice if this blogger noticed my comment (assuming it is passes moderation - still pending at the time of this post) and made some kind of response indicating that he has tried to understand the issue I raised. We'll see.

***Update: The blogger - his name is Stanley Bing - has responded to my comments and clarified his reasons for choosing to coin the phrase "Blackberry Autism" (see the first of the two links). He is allowing a link to here after reading my recommendation that he considers the issue further, which seems like a stand-up thing to do.
For anyone coming over from that site, I recommend that you visit the Autism Hub. The Hub is a central point for bloggers on the topic of autism, many of whom are autistic themselves. You may learn, by reading the thoughts of those who are immersed in the Autism community that Autism is not necessarily what you thought it was. Also see the link on my sidebar to The Autistic Distinction, which is a worthy treatise on Autism. In the sidebar you will also find a list of autistic bloggers - if you have time, I recommend reading them.

***Update #2: At the time of this update, over 24 hours after the previous one, Mr. Bing still has not actually posted the comment in which I put the link to this site. It is unfortunate that what could have been an excellent learning opportunity for he and his readers has been lost.

A Member of the Hidden Horde?

It is one of the great ongoing debates within (and without) the autism community - the so-called 'epidemic' of autism over the last 10-15 years.

Were I to point you to all of the excellent posts and articles on this topic, the list would be unbearably long. Suffice it to say that this topic has been rehashed over and over by lots of people with all kinds of agendas. In the final analysis, to me anyway, it appears that there may be a somewhat higher prevalence of ASD individuals than there were a couple of decades ago, but that the increase, assuming there actually is one, is nowhere near the what the commonly accepted prevalence figures from then and now would indicate.

The reasons that there seems to be higher prevalence are well-documented. First, the diagnostic criteria used now are tremendously broader than what were used in the past. Autism Disorder itself has been redefined into a "spectrum disorder", indicating by definition that it now encompasses a large spectrum of individuals with varying presentations of diagnostic criteria.

Beyond that, awareness has increased dramatically. In circumstances ranging from pediatrician visits to casual play-dates, autism is talked about openly and regularly. This most certainly has an effect on parents who may be concerned about their child's behavior and may seek additional information or a diagnosis, as well as on those who take part in the referral process (pediatrician to speech therapist to pediatric neurologist to developmental psychologist, or some variation).

Add to that the increased level of acceptance of autism as a legitimate diagnosis and the result will be even higher prevalence numbers. 20 years ago, if a psychologist settled on autism as a diagnosis, it was an extremely rare evaluation with tremendous implications for the patient and his/her family. Nowadays, for the reasons listed above, it is a less mysterious and abstract diagnosis. Increased levels of understanding lead to a mutual and synchronous increase in acceptance between clinicians and patients' families that make it 'easier' to settle on ASD as a diagnosis.

Another factor is the way services are doled out. Many families will push for the autism diagnosis over others for the simple reason that they are more likely to receive services either from the government or from their school systems. It may easier in California, for example, to receive behavioral therapies for a child Dx'd with Autism Disorder than it is for a child with a combination of Dyslexia and ADHD. Therefore, the parents of this theoretical child may push for an Autism diagnosis to receive what they consider to be the most appropriate services.

Also included in this category are younger siblings of children who have been diagnosed with Autism, who may receive funding for early intervention because they fall into a higher risk category (not because they have been officially diagnosed). Once these kids are on the books, so to speak, if they develop typically are they ever removed?

Considering that we have had changes in definition, changes in reporting, changes in diagnostic criteria, changes in the way society views and understands autism, is it even possible to have a discussion comparing prevalence levels now to then? It is all pure speculation at this point, though the arguments I have grouped together above certainly lead one to believe that any increase that may have occurred is less than what the 'numbers' would indicate.

One interesting question on this topic is: If you think back throughout your life, can you think of one or more people who, in retrospect, knowing what you do now, may be someone who today could be diagnosed as being on the Autism spectrum? Personally, I can think of 1 who I think would almost certainly receive the diagnosis today, as well as a few other possibilities.

Those who argue for the existence of an epidemic have a refrain, "Where is the Hidden Horde of autistic adults?" In my opinion, the (offensively monikered) Hidden Horde is all around us if we know what to look for.

Last week I attended a several-day-long business conference in another part of the state. Over dinner, I was having a conversation about autism with a few business colleagues. All of them, of course, were of the belief that there is, indeed, an epidemic of autism and believed, of course, that vaccines or environmental toxins probably caused it. Of the 5 people, however, only one knew someone who was autistic or had an autistic family member. Interestingly, here are 5 adults who all believe in an autism epidemic but who do not know any autistic people. So anyway, I explained some of the reasoning against the belief in the epidemic. I then asked "the question" that I mention above, and explained some of the behaviors one might observe in an undiagnosed autistic adult, just giving a general idea to help them think it through.
So one guy pipes up and says, "Oh, you mean someone like my Uncle." After further questions and explanations, here is the description of his uncle:
He works in the family business, at a supervisory level. He has had the same set of responsibilities for over 25 years - he performs them with absolute unflagging precision. At the same time, he has no interest in any goings-on outside his sphere of responsibility. He is friendly and outgoing, but has no long-term friendships outside his own family (where he is cherished for his loyalty and eccentricity). He tends to make acquaintances uncomfortable with his social behaviors. For example, he speaks in a tone just a little too loud for the atmosphere, regardless of whether the atmosphere is quiet or loud to begin with. He makes fleeting eye contact, and 'flicks' his eyes to and away from whomever he is speaking with. His first question for a new acquaintance is always "So where are you from?" When he receives his answer, he immediately responds with "Buffaloes!" or "Gamecocks!" or "Huskies!" The significance of this response is that this is the mascot for whatever NCAA football team is most closely located to where that person is from. He knows all of them. And then, for the duration of the acquaintanceship, he will repeat that mascot name each and every time he sees that person, no matter how frequently. It's like his way if saying "Hi". He "lives independently" (my colleague's choice of terms) in a family-owned rental property. His brothers help him manage his household finances (not by giving him money, as he earns a nice income, but just by helping get bills organized and paid and helping organize insurance and retirement plans and whatnot). He drives, but only a little because he does not like to.
So, readers, what do you think? Is he autistic? Is he a member of the Hidden Horde? If he were born today, would he be diagnosed with Autism Disorder or maybe Asperger's? Or perhaps most interestingly, if he had been diagnosed as a child, would his life look different today?

Thursday, September 13, 2007

On Parental Variety

On a daily basis, I sell flowers.
Upon my arrival at work, the first thing I do is the microeconomic equivalent of "stop and smell the roses" - in this particular case, I walk into our giant refrigerator to analyze our inventory position on any number of floral varieties that we are currently stocking, and based on the predicted market for each variety *that day*, I set prices. I then email and fax the price list to our customer base, and the day's commerce immediately begins. Over the course of a year, well over 1,000 varieties of flowers move through our warehouse and alternative distribution systems. To fully digest and be comfortable with the diversity included in those 1,000 varieties takes some breadth of experience and learning.

When considering diversity, one must have perspective. My reference to 1,000 varieties of flowers seems to exist on the outward end of the spectrum of potential diversity. 1,000 varieties? That seems to be so many. Until one compares the number to groups or categories with virtually infinite variation. Such as the group: "Parents".

"Parents" is not just your typical noun. It is tremendously loaded with all kind of culturally predetermined connotations. It is loaded with personal experiential bias. The human experience contains unfathomable variation in range of experience, but all of us are "parented" in our youths. Regardless of whether one's personal translation of parenting refers to biological or institutional entities, parenting happens for all of us. Even the lack of parenting equates to an experience of being parented in absentia. As a result, all of us who then choose to become parents ourselves enter this Faustian Bargain with some bias.

It occurs to me that one of the most powerful determinants of a person's ability to experience life in a positive way is the blend of that person's characteristics with his/her parent(s) characteristics. It does not require a world-class literary critic to notice that I am intentionally using value-neutral language in this discussion. If I were to do so - to assign value to parenting 'types' - the point that I am meandering my way into making would become moot. Or, to restate the issue, assigning value to parental technique would be counterproductive to this discussion by diminishing the fact that parenting is very difficult and very rarely performed perfectly. To offer perfection, therefore, as an attainable ideal, puts this consideration out of the reach of all of us.

I read today a most excellent post by Brett. Brett is a guy who has been there, done that as realtes to parenting. Brett has raised an autistic son who is now 15 years old. I am stealing from his trove of earned wisdom on making some of the statements you are reading now.

Here is one of Brett's statements. "Parenting is hard, mainly because it is a long-term investment of time and effort (and money, of course) with a high degree of uncertainty about the final outcome." This hit home with me. It says to me that parenting, as a long-term venture, does not finish out the way it starts. It does not present opportunites for clear choices, but instead provides endless areas of gray from which to carve out a black and white scenario. Is this different for the parent of a special needs child than it is for a typical child? As a man who fills both roles, I can confidently answer, "NO!".

Parenting can be viewed in so many ways - joyful, impossible, taxing, rewarding, unpredictable, even unavoidable and mundane depending on cultural mores. It can be happy and sad at the same time, difficult and easy in the same day, structured and chaotic in the same hour. Within a five minute time frame we can experience unquenchable enthusiasm for our childs' potential accompanied by paralyzing dread of that potential not being realized.

I cannot thank my own parents enough for the efforts they put forth in raising me. I have a great brother who also benefitted from their exhaustive efforts at providing us with opportunites. Due to our personal shortcomings - none of which could or even should have been perceived through my parents' rose-colored glasses at the time - my brother and I failed to thrive in any number of settings we were placed in. At the same time, we did succeed in other settings. I only hope that I can provide my own children with the same opportunities that I had as a youth, knowing that each one of them will fail at some and succeed spectacularly at others.

Good parenting can sometimes be viewed as less a case of "right and wrong" than it is of parents doing their damnedest to provide the maximum potential of best-case scenario for their kids given the prevailing circumstances. Based on this philosophy, things such as autism, deafness, Down syndrome, ADHD, blindness, MR, MD, etc. should be viewed less as an 'impediment to' good parenting and more as an 'invitation to' good parenting.

Wednesday, September 12, 2007


Recently, there have been several blogposts around the community on the topic of recovery. As I watch my own son develop over time, I think it would be prudent to make some comments on this issue.

First, some background. My son Jason was diagnosed in January 2005 with "Classic Autism", or "Kanner's Autism". For those familiar with the DSM-IV's diagnostic criteria, there are basically 12 points of diagnosis falling into 3 major categories. Jason was diagnosed as exhibiting 10 of the 12 categories of diagnosis, with 2 being untestable as he had shown at that point no verbal language abilities that could be tested. Upon follow-up testing around 14 months later, he was diagnosed as exhibiting all 12 points. It is important to understand that in most of these categories, his characteristics were not on the extreme end of the possible spectrum of behavior. For example, under (c)(3) "stereotyped and repetitive motor mannerisms (e.g hand or finger flapping or twisting, or complex whole-body movements)", he had several such movements but nothing that was easily observable. Most common for him was very regular hand-clenching, especially when focusing on something such as a book or video, that was very intense and sometimes caused his whole body to shudder with the effort. Another was repeatedly dropping small items from above his forehead to the floor, with the intent to make them fall through his field of peripheral vision. So, using this category of diagnosis as an example, he was displaying the full spectrum of diagnosable autistic behaviors but none of them in their most severe form (such as biting oneself or hitting one's own head repeatedly).
Now he is just under three years beyond his time of diagnosis. And, at this point, he is the type of kid that could be used as an example of a 'recovered' child. Keep in mind that I am using 'recovered' the way someone selling an autism cure may use the term - most often I hear the definition "indistinguishable from his/her peers". To someone unfamiliar with Autism Spectrum Disorder, or someone who only spends a limited amount of time with Jason in a fairly non-problematic setting, Jason has indeed become, in many observable ways, "indistinguishable from his peers" My wife and I know this only means that, in the course of his natural development, some of his most outward behavioral tendencies that are 'autism indicators' have gone away. The onset of verbal language also went a very long ways towards reducing the 'obviousness' of his autism. Does this mean he is any less autistic than he was 2 years ago? Not based on my understanding. What it does mean is several things:
- He has learned effective ways to deal with his sensory integration issues in ways that are not as outwardly expressed as his previous methods were.
- His ability to communicate has increased our understanding of him and his of us, leading to improved ability on both sides to understand and accommodate otherwise difficult situations.
- His ongoing skill acquisition has made it easier for him to progress through his typical days without as much frustration or as many obstacles to success.
- We, as parents, have accepted and understood that expecting him to conform his behavior to situations that his typical peers may be able to is not a fair expectation in many circumstances.

In case someone reading this is new to my blog, it is worth mentioning that we did not choose to treat Jason's autism with biomedical interventions - you know whose that are said to 'cure' autism. As I have stated before, I do believe certain 'biomedical' treatments are appropriate for certain autistic children and adults, though it is certain that none of them will cure the individual of their autism (an example would be that we give Jason melatonin to help him fall asleep more easily. Him getting more sleep may improve his attention and tolerability thresholds, which may give the appearance of 'lessening' his autistic behaviors, but it certainly does not cure him of autism. And even still, we don't give it to him to lessen said behaviors, we just give it to him because falling asleep at a decent hour is healthy for a young child).
I guess one takeaway point here is that, even though I am the parent of a child who could theoretically be paraded across a stage at an Autism One conference as Exhibit A of the latest cure, the claim would be patently false even if we had provided that treatment. We may believe that it was the BM intervention, and if so our belief would be wrong. So if any parents are reading this who have not yet decided which side of the fence they fall on as relates to choices in how to proceed with treating or educating their autistic child, please consider this point carefully. I am certainly not the first to make this observation, but it bears repeating from time to time.

Sunday, September 9, 2007

DAN! Linebacker

Tell me, how useful would it be to have one of these guys at most DAN! practitioners' offices on a typical day?

Can't you just picture it?
Dr. Whitelie is speaking to his patients' parents, lines of concern etched upon his forehead. "Our testing indicates that what your son needs," he says , adding a pause for dramatic effect, "is 2 hours per day with this ionizing foot detoxifier." Footsteps ........... *SLAM*! Dr. Whitelie is hurled against the wall of his office, breaking the framed diploma from 'Winthrop Online University'. His Board Certifications fly all over the office ... oh, wait he has no Board Certifications. His Foot Detoxifier is broken into a hundred pieces.

Yup, Terry Tate, DAN! Linebacker.

(Note: This post is done in humor, and I wish no physical harm on any DAN! practitioner, except maybe the one who is a child molester.)

Thursday, September 6, 2007

Not a Machine

Numerous readers will have reached this post by viewing the main page of the Autism Hub, reading its Title, implying that the post holds some element of razor-edged controversy or perhaps some scintillating yet subtle commentary on life as an autistic person or as someone who loves an autistic person.

I apologize, but you may have been misled. Instead, you will hear about a child's emergence (wait emergence the right word?),

a child's improvement (no, that doesn't really capture it),

a child's advancement (woah, that implies the the prior state is subordinate to the current state of existence),

a child's blossoming (nice flowery word, but encumbered by the same baggage as 'advancement'),

a child's change (there we go)

from a 'machine' to a 'little person'. I am talking about our baby, Colin. So if you visited here today looking for a commentary on autism, you might have clicked on the wrong blog. If, on the other hand, you want to learn something about Fathers (scientific evidence exists that 100% of autistic people have fathers) then read on.

And here is the groundbreaking news I have for you today:
Fathers (and those who don't agree here will surely flock from all points to attack me based on this statement) do not truly connect with our babies until somewhere between 6 and 8 months of age. We just don't. Its not that we don't try - God knows we try our asses off. We rock and cluck and soothe and wipe and swaddle and hug and disinfect and bathe and bottle-feed and swab and tickle and smooch and show off and strap in and burp and worry and watch and carry and swing and we do it all while hoping to make that 'connection'. This doesn't mean it works. I am the Father of three now, so I can speak with some authority when I say that personification is extremely difficult in the absence of understandable feedback. Read that carefully - the operative words are understandable feedback. What I mean is that Moms, whose exposure to the baby and all of his or her little expressions of need from the cellular level to the diaper-processing level, seemingly have an innate ability to bond with and understand our babies, and we Men do not. Oh we try - how we try! But any Father I know will agree with me that only around the age when you receive that chin-thrusting smile do you realize that your baby has turned from a little machine into a little person. And Wow! what a fun mutual experience that is for both parties. (That's the best part, you know. When one of you realizes it, you both realize it.)
Somewhere out there is a father, probably more than one, who is in the first 6-7 months of their first child's life and is thinking to himself, "This smug blogger dude has it all wrong - I am totally in tune with my little guy/gal!" My only response can be: wait a few months, wait until your baby stops smiling and starts beaming at you. She doesn't look at you, she grabs you with her eyes and accompanying impish grin. He is not laughing, he is belly-laughing - at something you did! Then, and only then, will you realize that what you thought, a few months ago was a firm connection, was just practice for the real thing.

And of course, in complete defiance of my first paragraph (yes, young readers, us thirty-somethings runs out of windmills to joust and eventually begin rebelling against our own selves, even within the limited context of a few paragraphs of writing) I am going to tie this into autism. Its the whole machine thing. I do realize that some fathers watch their 6+ month olds turn from babymachines into little guys and gals, and at some later point change again. I realize this because I have experienced it. "Regressive Autism" is not a defined thing, certainly not an official diagnosis, but many thousands of parents will define the point of development when they began to note divergent development patterns - even regression of acquired skills. This period - usually accompanied by an autism diagnosis within a few weeks or months - is a critical zone of decision-making for parents who have not already been through it (and, I guess, maybe for those who have as well). This is the point when us Fathers (and Mothers) must introspectively examine our attitudes towards our autistic kids. Did they diverge from the expected path of development? Did they acquire a disability? Have they been poisoned by Big Pharma and Big Government? Are they ... machine-like?
Anyone who reads here with any regularity knows this Dad's answers to these questions.

Oh - did I mention that my baby boy Colin turned from babymachine into 'little guy' over the last few days? That, my friends, is what prompted this little monologue on fatherhood.