Monday, April 30, 2007

New Generation Rescue Site

Okay, they finally got it up and running. Generation Rescue, purveyor of autism myths, home of the "rescue angels", creator of false hope under the guise of biomedical treatments for autism, has reworked and rewritten their unbelievably misleading website.
For those of you unfamiliar with the issue, GR sits at the epicenter of the mercury-causes-autism debacle. The founder, one J.B. Handley, is a crass, obnoxious individual who has basically staked his entire reputation, all of his credibility, on one premise - that autism does not truly exist, that it is actually mercury poisoning. At least that's what he has been quoted as saying in print, on TV interviews, in person on internet forums and blogs, etc. Conveniently, they put a link to one of these interviews on the site itself (though the link is not seeming to work currently). Here's one that does.
Over the last year or so, tremendous damage has been done to this failed hypothesis, most recently when the CDDS numbers in California showed that, as of Q4 2006, autism caseload was (still) on the rise, despite the almost-complete removal of thimerosal (mercury-containing preservative) from the childhood vaccine schedule back in 2001. Those who have all along supported this hypothesis despite a complete lack of evidence have grown more and more provincial in their defense of said position. The saddest thing about J.B. Handley's situation is that the behaviors of his own autistic son - absolutely promised by the father to be eliminated by chelation therapy (to remove mercury from the body) - can be construed as the final say-so on whether he is right or wrong, whether his credibility stays or goes. What an incredible burden to be placed on a child.
So anyway, the most noticeable thing when first viewing the new GR site is that something is ... different. The goalposts have not just been moved, it appears they have switched to a whole new sport. The shift in thinking (read: backpedaling) is apparent in the following statement: "We believe these neurological disorders ("NDs") are environmental illnesses caused by an overload of heavy metals, live viruses, and bacteria." Really? And no mention whatsoever that, for years, until just today, the site's main message was "Autism is Mercury Poisoning!" Hmmm. Seems like some explanations are in order. I'm not holding my breath.
There is a section on Treatment. Predictably, it contains short statements on such wonders as mercury removal (DAN! protocol, Cutler protocol), Dr. Yasko's RNA ... stuff (more on that here and here), Methyl B-12 and Valtrex, and Homeopathy. Wow. It reads like the who's who of unproven yet very expensive and time-consuming therapies. On the bright side, Lupron is noticeably absent, as are such marvelous treatments as medical marijuana and urine injections (though they list in their Hall of Fame a dealer of one of these treatments).
Anyway, other bloggers will do a much more effective job than I of covering all of the misinformation housed on this site. My point is this - it is stunning to me that GR has "reversed their field" without offering any explanation of how WRONG (or, at the very least, incomplete by their own admission) their message has been for all these years. It is frustrating to me that more parents may be exposed to this crappy science, and that some will allow it to dictate their understanding of, their treatment approach to, and their attitude towards their autistic children. It is amazing to me that the same die-hard group of researchers, bogus therapy sellers, and cure-dependent parents can continue to perpetuate the untruths found on this website. It is offensive to me that my son is being referred to, in essence, as a vaccine/mercury-"damaged" child, when in truth he is a wonderful, amazing boy who is neurologically divergent from the norm.

Wednesday, April 25, 2007

Consummate Professional

This post is dedicated to one particular individual who has been integral in support of Jason's comfort and development.
There are many contributors, to be sure, but some just have a natural flair, a knack, for total acceptance of Jason's quirks and foibles. This is a characteristic many of us aspire to, but that few of us (owing to our preconceptions and established world-views) achieve.
If the family is going somewhere, this person waits patiently and without urgency if Jason is taking a particularly long time.
If Jason needs someone who will hang around with him but not expect too much in the way of conversation, this is the guy who will do it.
If Lisa and I leave Jason outside alone and out of sight for a little while, he always volunteers to help keep an eye on him.
If Jason wants to be silly and run around, or maybe play a game of "monster tag", he is always a willing participant.

And all he asks in return for all of these hours of devotion is .... dinner. And a scratch behind the ears. You see, this individual I am referring to is Chance, the Amazingly Rotund Dog. Chance is 7 years old, yet displays the wisdom of an elder when it comes to meeting the needs of our little boys. He tips the scales at around 105+ pounds - that's a lot of love truckin' around our house on a daily basis.

"There is no psychiatrist in the world like a puppy licking your face."
-Ben Williams

Here is Chance in his natural habitat:

...his version of Autism "Support" Services:

...providing a shoulder to lean on:

...prepping the yard for a stimulating session of OT:

...coordinating with co-worker Smudge on a session of Floortime Therapy:

"Intelligent dogs rarely want to please people whom they do not respect."

-W.R. Koehler

Saturday, April 21, 2007

A Tale of Three Cities

I'd like to tell you about three cities.

The first city is really more of a hamlet. It is known as Colin's Landing. Colin's Landing is a quiet place, only recently having broken ground on its important buildings. As it is in its infancy, Colin's Landing has lots of development yet to undergo. There is very little hustle-bustle, and the streets are generally quiet. Strangley, Colin's Landing seems to not yet have found a schedule. It is as likely to be busy at 3 a.m as it is at noon. And even when it is busy, not a lot gets done. And many things still need to be implemented for a smooth transition to a larger village to be complete. The sewers, for example, are still under construction. As a result, backups and leakage occur frequently. This used to be easily manageable, but as the population steadily grows the problem becomes ... less savory. Fortunately, the citizens' needs are as simple as they can be - if everyone has a warm blanket, someone to snuggle with, is able to eat every 3 hours or so, and has a few simple diversions, then morale is very high. City developers are happy that manufacturing industries have been attracted to Colin's Landing's positive economic climate. Such players as diaper manufacturers and household cleaning supply distributors seem to have set up shop quickly and effectively. Mayor Lisa played a significant role in developing these industries, and manages their growth efficiently while putting their products to use on a daily basis through favorable government contracts. Colin's Landing is a simple, wonderful, comfortable place to visit.

Our next city is Tylertown. This place is a kick. The bars stay open late, even though they only serve chocolate milk and apple juice. Dancing in the streets is not only acceptable, it is de rigeur. Founded only four years ago, Tylertown seems to have grown so fast that it faces urban sprawl soon. City planners are in a moderate state of panic about their ability to control growth while still ensuring safety for the citizenry. Some of Tylertown's most prominent citizens include the Power Rangers and Scooby-Doo (side note: recently, a crime ring was broken up that was operating out of the old cemetery. And it would have worked, too ... if it weren't for those meddling kids!) There are swingsets in every park, and the local tee-ball team, "That's MY Ball", is last in its division but having fun doing it. Despite the protestations of water-control advocates (named Steve), many residents have a permit for carrying a concealed squirt gun. Politics are blustery and over-the-top, consisting of one-man filibusters on citizen's rights to control their own property and to eat dessert for dinner. Tylertown, while very fun, is not a relaxing destination. Everything happens very fast, emotions run high - for better or worse - and chaos is the name of the game. Tylertown has a bright future ahead of it, and getting there is half the fun - just ask the citizenry.

And last, but certainly not least, is San Jason. San Jason is the oldest city in D county, and well-deserving of its reputation for serene beauty and measured pace. Though there really is no "Saint" named Jason, it was determined by city founders that the honorific would be applied due to the city's beatific nature. This city is incredible in its scope, humbling in its complexity, and somehow comforting to a degree not found in many cities its age.
When driving the streets of San Jason, two things are readily apparent. First of all are the cars. Remarkably, they resemble Lightning McQueen, 'Mater, Sally, and Doc Hudson. Not just some of them - all of them. And, what's more, sometimes they just sit there - all lined up in perfect order. Also of note is that there are no other cars - just these cars repeated over and over. A complete lack of diversity juxtaposed with an overriding sense of "rightness". Second, although the street-map seems like a perfect grid when viewed from above, in reality the streets lead you to very unexpected places. Its as if a non-neurotypical mind designed the whole plan in an attempt to confound us NT drivers. Given enough patience, you will get where you need to go. It just might take you a little longer to get there. And don't be afraid to make a few stops on the way. My personal favorites are the ice cream shop (they serve 31 flavors, all of them chocolate) and Tidmouth Station (where Thomas, Percy, Gordon, and James sleep after Very Productive days spent being cheeky and fussy most of the time). Another interesting aspect of San Jason is that the restaurants all only serve three or four different kinds of foods. Oh well, "...when in Rome..."!
San Jason has one very special feature - it is called Autism Meadows. This place is a wonder, and it is the pride and joy of the city planners. Autism Meadows sets San Jason apart from most 5-year old cities, and gives a special air, a special ambiance that other cities can't seem to match. There is a certain level of introspection, a lack of hostility, a uniqueness that is only to be found in this location. Sure, not everyone appreciates it. Some neighbors are even uncomfortable with it - they think it may reduce their property value or create "disturbances" in the neighborhood. But any real estate agent who has done their research would set them straight. Autism Meadows is a fine place, full of interest and wonder, and just about anyone I've met who has visited - despite the fact that it is not often listed in the tour guides - agrees that once you visit Autism Meadows, you realize that San Jason is one of the neatest, most special cities you could ever experience.

In summary, D County has several wonderful destinations to choose from. They all have their charms, they all have their shortcomings. I hope you will visit these interesting locations and enjoy them like I have. Touring each one is a life-changing experience that is to be treasured and cherished.
The best news is that every county you have ever visited has wonderful cities just like these. Don't focus on the road too much, or some of them will pass in a blink. Stop at each city, town, hamlet, or village and see what it has to offer. You never know what treasures you might find.

Thursday, April 19, 2007

Role Reversal

Tonight my wife and I attended a very interesting meeting at our sons' school district. The meeting constituted a reversal of roles. Tonight the school was learning.
Let me explain. The Special Ed Director of our district - a very small district in a semi-rural area tucked away in the middle of busy Southern California - called a meeting for all parents of students who are autistic. When we arrived, she had the white-board divided into 3 sections: Defining the format of ongoing meetings like this one, Short Term District Goals, and Long Term District Goals. The big surprise was that all that appeared under the Titles was - empty white board. Did she seriously mean to ask us our opinions on what form meetings and goals would take? Shock! Once we picked ourselves up off the floor, we got down to business.

In attendance were 4 other moms, my wife and I, and - get this: the school psychologist, occupational therapist, and autism services consultant (a third-party provider) - all on their own personal time. A positively positive brainstorm session ensued, beginning with establishing the format and regularity of the meetings to be held in the future. It was decided that once every other month, alternating mornings and evenings, for 1+ hour sessions, we would meet. Additionally, one extra meeting for transitional assistance a few weeks prior to each school year. Then we got on to goals:
Short Term Goals
Improved collaboration between mainstream teachers and Sp.Ed. service providers, where applicable...
Extra support for new school year/Fall transition in the form of trained "floaters" who are available to kids, parents, teachers, and even classmates to answer questions and help resolve issues..
Assign a permanent spot on the PTA for a parent of an special needs child (not necessarily autism)...
Consider a Buddy system, wherein NT kids of same-grade would "pair" with students in the Sp.Ed. classroom for defined periods of time. Use this as an "award" for the NT kids - something they aspire to earn. (This idea makes me uneasy. I think it accentuates differences, and a caste system is implied, even if the intended outcome is positive. Any input on this would be appreciated)...
Begin a "Resource Center", beginning with two titles - My Friend with Autism and Rules

Long Term Goals
Sensitivity Training - many different methodologies were discussed on this topic, but no consensus reached. The idea is a good one, though, if implemented with forethought and care...
Sibling Inclusion, wherein all siblings of special needs students would have some fun (bowling, swimming, etc) and be provided an informal forum in which they can share experiences and develop friendships...
Fundraising for special events and services. One mom owns a skin-care clinic, and could provide free sessions. One mom makes gift baskets that could be sold. I own a wholesale fresh flower distributor, and could sell bouquets. We could make it work!

Well, if by this time any of you have decided to immediately put your home on the market and move to our school district, then rest assured that you can hang out here on the weekends for BBQ's and a few icy cold ones.

When roles are reversed like they were tonight, that's what I call PROGRESS.

Wednesday, April 18, 2007

Credit Where Credit is Due

Anyone who has dwelt upon the various talking points of the ongoing debate between what I will loosely refer to as "cure" vs. "acceptance" philosophies has come across this one:
How does one know when a particular treatment/intervention is working?
The short answer, so as not to keep you in suspense, is: One doesn't.

The issue, taken in its entirety, is far more complex than the short answer implies.

Before proceeding, a definition of "treatment" would be beneficial. For the purpose of this discussion: ABA, IBI, IVIg, Sensory Integration, Secretin, Music Therapy, ALA, Hippotherapy, Floor Time, RDI, Chelation, Auditory Integration Therapy, Seroquel, SLT, GFCF diet, Lupron, OT, etc, etc, etc...
All of the above listed treatments were conceived of to reduce/moderate/eliminate behaviors associated with Autism Disorder ( a questionable goal, but that is a topic for another post). Needless to say, some are far more dangerous and invasive than others, and some far more adequately researched than others as well.

There are numerous obstacles to knowing which, if any, of these treatments are effective in achieving their desired results. Among these are the Placebo Effect (applied to observers as well as subjects) and the distortion produced by applying numerous treatments simultaneously, which is most often the case. The logical and scientific analyses embodied by these effects are legitimate, but they completely overlook the really important issue: How will a person change and develop over time in the complete absence of "named" treatments? Or, to put it another way, does a good ol' dose of understanding, love, dignity, and familial "safe-harbor" help an autistic individual to achieve all, and more, than the named treatments can?
And this is where we arrive at the point of the discussion. Let's give credit where credit is due.
And I would submit that credit is due to the autistic person him/herself. They are the ones who hold the ultimate responsibility for their outcome. It is through their own efforts that they succeed in becoming the people that they want to be! It may come as a surprise to many parents that autistic kids, just like neurotypical kids, progress through various stages of development - each one with its own set of benefits and detriments. Its called growing up. And "treatment" is not required for a child to grow up.
There are many parents out there who continually trumpet their efforts as being the catalyst for their child's success. One mom recently, in an incredibly vainglorious display, posted a video showing her son's "episode" at the local DAN! doc's office receiving IV chelation. Regardless of what one believes of the efficacy of chelation therapy, consider the point that her cheerful, inquisitive, friendly, autistic son's changing behaviors were being attributed, in his mother's eyes, to the intravenous drip from a plastic bag - not to the boy himself. And therein lies the fallacy. It seems to be very difficult for some people to ascribe positive behavioral changes in an autistic person to the person themself, and not some external factor. Furthermore, many parents claim too much credit for their role in "recovering" their child.
This discussion is not intended to imply that the actions of parents are not meaningful, that the duties of parents are not significant. It would require a fool to believe that autistic children need any less guidance or support than neurotypical ones. And I will be the first to admit that, in many cases, a higher degree of commitment is required to guide our autistic kids through the complexities they will encounter at all stages of development.
In my family, we have selected a modified version of ABA, speech therapy, and some OT to help our son gain important skills. But ultimately, he is the one who has to actually do the work.
My point is solely this: Let's give credit where credit is due - to the kids, adolescents, young adults, and adults themselves. Not to the aforementioned treatments, which can only serve to assist the natural, human processes that will take place regardless of what neurological conditions prevail.

Tuesday, April 17, 2007


When considering what I may have to offer to the blogging community that discusses autism and Neurodiversity, I first had to consider what areas are already covered. The truth is, just about all of them.
Not Mercury takes a scientific approach to the issues, with a strong measure of humanism thrown in. Ditto for Dad of Cameron. Autism Diva keeps a close eye on the MIND Institute and expounds on all things affecting the welfare of autistics around the world. Bartholomew Cubbins is the maker of the best anti-quackery videos to be found anywhere. Joel gives us the autistic perspective on ethics and morals. Prometheus exposes the flaws in logic that lead all of us down the path of false conclusions, while shedding a very bright luminescence on the flawed arguments of the Mercury Militia. Club 166 ruminates on family life, while Estee continually reminds us of how wonderful it is. MOM-NOS makes me want to hug Bud, though I haven't even met the little guy. Amanda, through her blog and videos, has given more mileage to autism awareness than ASA has accomplished in years. And Kathleen, oh gosh, remind me never to get on your bad side. Also, please remind me to never enter into a logic debate with Interverbal, as I will most certainly lose (he is probably critically analyzing my last statement, even though it compliments him). Let me not forget Kev, that pot of gold at the end of the Google rainbow, who is the most commonly used launch pad for autism acceptance the world has ever known - literally.
I know there are many of you who I have not included on this list, and no offense is intended by the ommission.
I would strongly encourage any visitor here who has not reviewed the aforementioned blogs and any others that are included in the Autism Hub to do so.

The question remains - what can I offer? Hence the name of my blog - One Dad's Opinion. Since I am seemingly unable to keep up to pace with the science, I am left with ... opinion. Since I am neurotypical and cannot accurately speak to the autistic perspective, anything I offer there is ... opinion. But I AM a Dad, and therefore I can speak about fatherhood utilizing ... well ... opinion. So there you have it. If you are interested in this Dad's opinions, you've come to the right place.

Friday, April 13, 2007

Taking up the Pen

I have never kept a diary or any kind of journal. I didn't work for the school paper. I struggle with Thank-You notes. Interoffice Memos do not come easily to me. When I handwrite I only use block letters, as cursive is a skill lost to me since junior high.
And yet here I sit, writing.
I am a husband to one, father to three, son to two, brother to one, brother-in-law to four, uncle to three (so far), and employer to around 40.
I have one son, my oldest, who was diagnosed with autism about two years ago. Though at the time this discovery was a very difficult and emotional event for my immediate family, we have come to learn that my son's neurological differences are value-neutral. They are neither good nor bad. They are what they are. And I am an improved person for having been fortunate enough to have this little fellow impact my life.
It occurs to me that, years from now, these words will be accessible to all three of my sons. At this very moment these words are able to be read by the other people who I value so much in my life. In no way do I mean to diminish their impact on me by applying focus on my oldest boy. What makes the impact he has on me so notable - and provides the primary motivation for putting my thoughts "on paper" - is this:
Through the experience of raising him through his first 5+ years of life, I have unlearned so many things I thought I knew and learned so many things I never expected to care about. This is also true of my other two boys (one of whom is 4 years old, the other 3 months), but is certainly accentuated by his behavioral and sensory differences.

As I explore and improve on the process of posting my thoughts to a silent audience, I may talk about any number of things, including the flower business (my profession), marriage (my foundation), fatherhood (my devotion), and autism (my inspiration).
For those of you who are interested in stopping by for a look; thanks for reading, and please feel free to comment.