Saturday, December 31, 2005


Traditionally we take a little time at the changing of the calendar to take stock of the past year, and make resolutions for the coming year. Well, what a year this has been!

In this past year, Sym and I have seen our little boy make great strides in overcoming the obstacles imposed by his autism. He still has a way to go in his recovery, but he will get there.

Five months ago I started blogging after having spent a couple of months visiting other sites. I got into this based on the arrogant supposition that I had a lot to say. Very soon after getting this site up and running, I found that I had a lot to learn. To all those who stopped by and kept the conversation going, I extend my sincere thanks whether or not you agreed with me.

Of course, the biggest event for my family this last year was Hurricane Katrina. To those who gave their good wishes and prayers while we were refugees, you have my eternal gratitude. As it turned out, my wife and I were extremely lucky in that we had jobs and a relatively intact home waiting for us, but the evacuation was (and the ongoing recovery for this region is) nonetheless frightening. While we were away, the computer became our lifeline. You helped us more than you can imagine.

Perhaps the coming year won’t bring any event so life-changing as Katrina, but then again, it might. We might see events that change our lives to in even more profound ways.

On Sunday, I’ll be in the kitchen stirring the pot of black-eyed peas that comprise the heart of the traditional New Year’s Day dinner for many families in the South. While cooking, I’ll be formulating several resolutions for the coming year, intending to become a better father, a better husband, a better brother, a better lawyer, a better this, and a better that. My resolutions are much like the New Year’s Day meal itself. We eat black-eyed peas because they’re supposed to bring good luck, and cabbage because it is supposed to bring wealth. It is highly debatable whether I have seen enough good luck or wealth to make even a coincidental connection to the meal, but I love tradition without regard for outcome.

That many, if not most, of my resolutions will be broken in a relatively short time does not necessarily imply a lack of dedication to being better. The simple truth is, resolutions are based on the world we faced in the last year. Each new year brings challenges that we simply cannot visualize in advance. All we can really do is hold onto core principles and make our way as best we can.

Happy New Year!

Friday, December 30, 2005


Liz Birt, one of the founders of Safe Minds, was killed the other day in an automobile accident while vacationing in Aspen, Colorado. I did not have the privilege of meeting or communicating with Ms. Birt, and that shall be a regret for the rest of my days. She was an inspiration to many of us.

Online tributes have been posted by Ginger and on the NAA’s site.

Saturday, December 24, 2005


. . . and it was always said of him, that he knew how to keep Christmas well, if any man alive possessed the knowledge. May that be truly said of us, and all of us! And so, as Tiny Tim observed, God bless Us, Every One!

Charles Dickens, A Christmas Carol

May we all keep Christmas well, today and hereafter,

Thursday, December 22, 2005


The reaction of NBC Chairman Bob Wright and his wife to their grandson’s autism was the same reaction many of us have; they decided to do something about it. Of course, the Wrights have more resources at their disposal than most of us. One thing that happened was a week of special reports several months ago on the NBC Nightly News and Today, which many felt gave too little exposure to the ongoing mercury controversy and biomedical treatments (with others, no doubt, feeling that any mention was too much). The other contribution by the Wrights was to found Autism Speaks, an organization that, thanks to its exposure on NBC, quickly became a fund-raising powerhouse.

Despite statements supporting research for biomedical interventions, Autism Speaks has, until recently, said little about environmental insults as a possible trigger for autism. Many saw this as an indication of its founder’s likely hesitation to offend the pharmaceutical industry that provides a major source of revenue for NBC. Perhaps those who thought that may have been a little hasty in coming to their opinions.

Autism Speaks recently issued a very balanced statement concerning a possible connection between mercury and autism. That statement reads, in part:
The body of evidence gathered through epidemiologic research to date does not currently support a causal relationship between thimerosal in childhood vaccines and autism risk. However, it is very difficult for even the best epidemiologic study to rule out the existence of small susceptible subgroups of children with autism in whom thimerosal exposure may have played a causal role. Unfortunately, there are currently no means of identifying individuals with increased mercury susceptibility nor are there proven methods allowing researchers to separate individuals with autism into groups more or less likely to have different sets of causes.

The thimerosal question has highlighted a number of points whose further consideration should significantly advance autism research. First, although genes are believed to play a major role in autism, more attention needs to be paid to mechanisms where genes exert their influence by altering susceptibility to environmental exposures and mechanisms by which environmental exposures may alter gene expression. Second, there is a great need, when studying environmental exposures, to find ways of identifying highly susceptible individuals. And, third, because autism is a complex condition possibly having multiple causes, researchers need to find reliable ways to distinguish autism subgroups with distinct etiologies.

I interpret that statement to express an opinion that the science is not yet at a point where a causal connection may be drawn, which, admittedly, implies that a connection may not be there to discover. Yet the statement also emphasizes the key element of genetic susceptibility that has not received enough attention from scientist for the hypothesized connection to be fully explored.

In its statement, Autism One spells out what it intends to do about helping us all move closer to resolving the controversy:
Autism Speaks plans to strongly support a multidisciplinary research agenda on environmental exposures and autism. We believe that projects acknowledging the role of gene-environment interaction and incorporating markers of exposure susceptibility and etiologic heterogeneity will be the most productive in the long-term. Given present knowledge, there is a fairly broad array of neurotoxic environmental exposures worthy of further study but, moving forward, the type and timing of exposures under investigation should continue to comport with emerging developments in autism neurobiology.

I feel the above expression of commitment should be welcomed. We need to look at the processes at work rather than focusing on a single hazard. Moreover, approaching the issue from the standpoint of genetic susceptibility should lead to a complete answer that will help end the controversy. I happen to think the role of mercury -- including thimerosal exposure -- will be clearly implicated by the type of research Autism One suggests, but the main point is to find the truth.

Autism One is now inviting researchers to submit grant proposals to study a wide array of questions:
We recognize the need for new approaches to making an objective diagnosis of autism, studies to explore exposures that might trigger autism in susceptible populations, and the applications of the latest technologies to identify the basis for familial susceptibility to autism. Intensive behavioral therapies are generally accepted to improve the outcome of autism in some children, especially when begun in early life. Studies to build on these successes and to better understand the predictors of who may or may not respond to behavioral therapy, and what augmentations to current therapies might improve the success rate, are certainly appropriate. These are a few examples of areas that would benefit from additional investigations.

Autism One’s stated interest in looking at the complex interaction of genetics and environment is laudable. Here’s hoping they follow all the leads to find the truth.

Tuesday, December 20, 2005


Today our son’s kindergarten class held its Christmas program -- and yes, it was called a “Christmas” program and not a “Holiday” program. The children, dressed like cowboys and cowgirls for a Wild West Christmas, approached the microphone in groups of two or three and recited little lines in between songs sung by the entire class.

When it came time for his lines, our little man performed like a champ. He walked up with the two little girls he was teamed with, and recited his part without a hitch, albeit with the articulation problems that make his speech a little difficult to understand for the uninitiated:
Next to the chimney we sit and wait,
We hope that Santa won’t be late.
Some hang stockings, but we put boots,
To be filled with sweets and horns that toot.

Not only did he get all the words out, just as we had rehearsed so many times, but he even pulled the mike a little closer to him and stayed a few seconds longer than his friends to relish the spotlight a little. My son has clearly inherited my proclivities to hamdom.

The songs were another story. From the first song, it became clear that our boy was over-excited. Instead of singing and dancing along with his classmates, he stood at the end of the line and stimmed. Apparently, our son’s excited inability to fully participate was anticipated, for his aide was sitting on the floor adjacent to the line, and he sat out most of the musical numbers in her lap.

Being the parent of an autistic child in a mainstream classroom tends to make one defensive. I stood poised to answer any ignorant comments or inappropriate eye-rolling with Kristina’s deceptively simple explanation of “my son has autism.” As it turns out, explanations were unnecessary.

To be sure, our son elicited more than his share of smiles and chuckles from the assembled parents, but I detected no hint of mean-spiritedness. Instead, it seemed like every person in the room was rooting for our little boy. How in the name of Father Christmas did we end up in such a pocket of enlightenment? After thinking about it awhile, the answer was obvious.

From the very beginning of the school year, our teacher made sure that the other children understood their classmate’s “difference.” On occasion, we’ve heard from other parents how much their kids talk about our son, and we’ve never been sure how to take that. But now we know.

The other parents of the class have been getting lessons in compassion from their children. Those children accept our son as one of them. And their parents are not going to be caught being less mature than the average kindergartner.

Despite a spirit of cooperation on the part of our local school system, my wife and I are still struggling to get our son the services he needs to realize his potential. Much of the problem appears to be that the special education personnel seem unprepared to deal with the level of autism -- both quantitative and qualitative -- we now see in our schools. It then becomes incumbent upon the parents to become the specialists, and educate the educators about what needs to be done. That process can become frustrating. Until I see the process fail, however, I’m not prepared to say that our local school district has become mired in what Tina Giovanni calls the “epidemic of denial.”

In the meantime, we’ve been given a glimmer of Christmas hope, not by the special education teachers and specialists, but by an extraordinary kindergarten teacher and the children of her class.

Friday, December 16, 2005


I don’t write much about the emerging science looking at hypothesized biological causes of Autism Spectrum Disorders (“ASD”) for a variety of reasons. One of those reasons is that, as a lay person, I don’t want to be perceived as giving unqualified expert opinions. But even lay people are capable of understanding the basics of science, just as lay people are capable of understanding the basics of my field (law) given a little effort. Parents of autistic children need to take note of ongoing scientific developments if they want to understand what is going on with their children. A very interesting new study has been the subject of internet discussion the last couple of days that deserves mentioning.

Researchers, based at the University of Texas Health Science Center set out to determine if a link can be drawn between environmental releases of mercury and the incidence of autism. The abstract reads as follows:

The association between environmentally released mercury, special education and autism rates in Texas was investigated using data from the Texas Education Department and the United States Environmental Protection Agency. A Poisson regression analysis adjusted for school district population size, economic and demographic factors was used. There was a significant increase in the rates of special education students and autism rates associated with increases in environmentally released mercury. On average, for each 1000lb of environmentally released mercury, there was a 43% increase in the rate of special education services and a 61% increase in the rate of autism. The association between environmentally released mercury and special education rates were fully mediated by increased autism rates. This ecological study suggests the need for further research regarding the association between environmentally released mercury and developmental disorders such as autism. These results have implications for policy planning and cost analysis.

The implications of this study, scheduled for future publication in Health & Place, are obvious. If environmental mercury has a casual connection to autism, then shouldn’t the same hold true for the injection of thimerosal into our children? Critics will argue that a possible link to environmental mercury discharges diminishes the impact of thimerosal by showing an alternate causal source. (The underlying causation theory of this study is that the burning of fossil fuels discharges inorganic mercury into the air, which, after being deposited onto soil or water, is converted into toxic methylmercury by chemical reactions or exposure to bacteria.) On the other hand, common sense (there I go again, resorting to common sense) dictates that if environmentally released mercury poses a danger, wouldn’t mercury injected directly into children be even more dangerous? And assuming the danger posed by mercury in general, it’s hard to argue against thimerosal being the most pervasive source of mercury exposure, at least prior to the much ballyhooed, and debateable, cut-back of thimerosal in vaccines.

I have often stated that autism is too complex a problem for us to oversimplify explanations for a cause of the recent ASD epidemic in the United States. But a hypothesis that mercury exposure, particularly from childhood vaccines, is a big piece of the puzzle makes sense to me. So when I see a study that links mercury and autism, I take note.

The Texas study is not going to be immune from criticism. I expect that we will see some commentary decrying the use of a Poisson regression analysis. I am not a statistician, and I would certainly invite any comments from those who are better versed in that discipline than I am. That being said, my understanding is that a Poisson distribution predicts probabilities of occurrence based on average rates in a discrete time period. If I understand the Texas study, the regression was used to account for demographic differences between various school districts included in the statistics. But the use of any regression analysis opens up the study to claims of bias.

Methodology aside, the real criticism we may expect is that the study can only show association and cannot show causation. That is a criticism with which the authors of the paper agree:

. . . these results indicate that the association between mercury release and school district special education rates was completely accounted for by increased rates of autism. This indicates that, in Texas, the increase in special education rates attributable to environmental mercury can be explained by increases in autism. The results of this study are consistent with our prior nation-wide study where an association between various developmental disabilities and environmentally released mercury was observed at the state level (unpublished manuscript). However, the results of this report should be interpreted with caution for a number of reasons.

First, this is an ecological study that precludes interpretation at the individual level. We have used aggregate units in this analysis to investigate differential rates of autism as a function of pounds of mercury at the county level. While we properly addressed the potentially biasing effects of clustering (school districts nested within counties) by utilizing appropriate analytic methods (e.g. multilevel-analysis), individual data are required to make a better case for the observed associations and their interpretations. Nevertheless, ecological studies of this type are often an important first step in identifying subsequent areas of investigation.

Second, a causal association between environmentally released mercury and developmental disorders cannot be determined from this cross-sectional data. Data availability permitting, future studies could investigate this association by using longitudinal data where changes in mercury levels over time may be used as a predictor of the rate of change in developmental disorders over time.

Third, we should consider that school-based administrative autism data, such as these, are only a proxy for true community prevalence. However, these autism rates are most likely biased downward.

R.F. Palmer, et al, Environmental Mercury Release, Special Education Rates, and Autism Disorder: An Ecological Study of Texas.

My own reservation with the Texas study is the same problem that any statistical analysis has. It cannot prove causation. Indeed, I would be hypocritical if I did not acknowledge the weaknesses of a statistical analysis like this one after so often criticizing the epidemiological studies relied upon by those who deny a connection between vaccines (particularly those containing thimerosal) and the triggering of ASD because the input data can be too easily manipulated -- by either design or error -- to be a reliable indicator of causation. There is no such thing as a perfectly designed analysis as long as the conclusions depend on arbitrary decisions concerning what data to use, and how to use it.

So as enticing as the Texas results are, let’s not overstate the case. The study is no more than what the authors call it: “a necessary first step in identifying plausible contributing factors of risk for developmental disabilities.” I could certainly quibble with the use of the term “first step,” as I believe the first steps have already been taken.

On the other hand, let’s not understate the case either. The Texas study is an important step toward gaining an understanding how a combination of genetics and environmental factors can trigger ASD; it’s another piece of the puzzle. It cannot be ignored; it must be followed up.

Tuesday, December 13, 2005

SOME HURRICANES WON’T GO AWAY (But New Orleans is still New Orleans)

For a while back in late August and early September, this autism blog turned into a hurricane blog, chronicling my family’s evacuation from South Louisiana, our time away, and our return. Around here we still live with Katrina every day. I’m lucky enough to live in a part of the New Orleans area that got up and running pretty quickly, although “up and running” is a relative concept.

Our area’s struggle to rebuild is being played out in the national press. The other day, the New York Times printed an editorial noting the critical point in time at which New Orleans finds itself. The City and State need to devise a real blueprint for the future, but all efforts will be meaningless unless the federal government is willing to not just rebuild, but improve the levee system to withstand a category-five hurricane.

Rebuilding the physical city is only half the battle for New Orleans. The other half is to recapture the culture of the City. No other place has the unique mixture of music, food, and soul of New Orleans. And no other City celebrates Mardi Gras the way we do. Some of the traditions were imported from elsewhere (primarily Mobile, Alabama), but New Orleans is the place everyone thinks of when Mardi Gras is mentioned.

Mardi Gras is the culmination of the liturgical season of Epiphany. Starting on January 6th (i.e., twelfth night of Christmas), various organizations in town start the celebration with balls and banquets that will last through the season that ends on the day before Ash Wednesday. (Mardi Gras literally translates as “Fat Tuesday,” meaning it is the last day for fatted meat before entering the Lenten season of penitential fasting.) Technically, only the last day is Mardi Gras, and the rest of the season is referred to as “Carnival.” But modern usage has now bestowed the tile of Mardi Gras on the entire season.

Carnival kicks into high gear in the week-and-a-half before the big day, and the streets are filled with parades put on by private clubs called “krewes.” We line the streets to listen to high school bands play with a beat that could not be reproduced anywhere else, and to catch beads and trinkets thrown by float riders. We place our small children in home-made seats atop step ladders so they can see, and more importantly be seen by the riders who will shower the youngsters with goodies.

The parades form the centerpiece of the celebration, but they are not the whole story. On Mardi Gras itself, “marching” clubs make their way downtown from the Irish Channel, stopping at various watering holes. The “Indian tribes” of the African American community make their own way through the streets, wearing feathered costumes that rank among the finest folk art in the nation, and raising their voices in chants that helped to form the unique brand of New Orleans funk that contributed to the development of rock and roll.

And everywhere, throughout the season, families and friends gather simply to share a good time in New Orleans style.

In 1979, the parades were cancelled due to a police strike in New Orleans, but Mardi Gras went on in a hundred different ways all over the City. That was the year we realized that Mardi Gras was not something we did, but was part of who we are. As we say down here, you know you’re a New Orleanian if you think purple, green, and gold (the Mardi Gras colors) actually look good together.

Many people -- including a large number of “refugees” who have not yet been able to return home -- are saying that New Orleans cannot afford Mardi Gras this year when so much of the City needs fixing. It’s an easy argument to make, and it makes perfect sense. That is, it makes perfect sense for anyplace other than New Orleans.

Obviously, things will be different. Mayor Nagin, who understands all too well that celebrating as we have before makes little sense, has ordered a scaled-back Carnival season as far as parades go. But if we had no parades at all, New Orleans will still observe Mardi Gras. Chris Rose, the great columnist for the Times-Picayune explains it all better than I can. Before you say you can’t understand why we would want to celebrate anything, read what he has to say. Let me know if you don’t understand all of the local references, and I’ll gladly explain.

Sunday, December 11, 2005


With just two weeks to go before the big day, I’ve had a real Christmasy weekend. Last night was the firm Christmas party, and I managed to get through the evening without making an ass of myself. Today we took the little fella to see Santa, and he waited patiently in lined to sit on the lap of the jolly old elf.

I use things like Santa pictures to provide a visual record of my son’s descent into autism, and the gradual decline of his autistic symptoms. From the excited look on his face before his regression, to the blank expression of a little boy who would only stand in front of Mr. C, to the happy smile of a boy trying to forge a relationship with Santa. A good picture just makes for a happier Christmas.

We try to do Christmas right around the Rankin house. Like many people in post-Katrina Louisiana, we decided to scale back our decorations a little. That means it only took me one full day instead of two to string up the lights outside. Although we have not done “the full Griswold,” you can see our house from a pretty good distance at night.

The radio stays tuned to holiday music, and we actively seek out Christmas movies on television. Every year I add to a long list of Christmas movies I love. From old favorites like White Christmas to newer movies like Elf. I’ll sit and laugh with National Lampoon’s Christmas Vacation or get into a little more sentimental mood with Love Actually. I’m still trying to figure out an appropriate reaction to Bad Santa, but I think I liked it.

There are five movies I consider classics, with at least one viewing of each being required for a complete Christmas season. In reverse order my favorites are:

5. Miracle on 34th Street (1947)

This one’s been remade a couple of times. Nothing can touch the original for two reasons: Natalie Wood as the little girl struggling with what to believe and Edmund Gwenn as the real deal.

4. It’s a Wonderful Life

Because NBC now owns the exclusive air rights to this movie, we don’t see it quite as much as we used to. It’s worth a little extra effort to catch it.

3. The Polar Express

It’s rare that a movie can become a classic from the moment it is released. This one qualifies. Believe.

2. A Christmas Story

In what other movie can you hear Santa utter the immortal words: “You’ll shoot your eye out, kid.”

1. Scrooge (a/k/a A Christmas Carol) (1951)

Dickens’ classic tale of redemption has been made and remade more probably than any other story. At least two of the versions have been entitled Scrooge, including my favorite, the 1951 movie starring Alistair Sim as the miser. He never stoops to stereotypes playing Ebeneezer, and every moment rings true.

The heart of Scrooge comes toward the end when Ebeneezer, for the first time in many years, decides to seek out the company of others. He goes to the home of his nephew, Fred, to seek forgiveness and share in the joy of the day, but he isn’t at all sure what reception he might find. Scrooge is let into Fred’s house by a young maid, a person that wouldn’t have even registered on Scrooge’s consciousness just 24 hours before. Now he looks to her for encouragement, and it is only after she gives him a little nod, that Ebeneezer can walk into the room where his nephew’s party is being held.

The scene between Scrooge and the maid, in which no words are spoken, is among the finest 30 seconds of film ever presented. That brief encounter reminds me that nobody is truly alone at Christmas. All one has to do is reach out a little.

Enjoy the holidays.

Thursday, December 08, 2005


It’s so ironic that some people say that we, who believe environmental factors may have triggered our children’s autism, only believe that because we feel guilt because we did not produce genetically perfect children. They just don’t understand that most of us feel no guilt at all about genes we can’t control, but we do feel guilty about not learning more of the dangers to which we exposed our children.

We feel guilty that we did not take seriously the buzz that was starting about mercury in vaccines. We feel guilty that we did not heed the warnings about pregnant women eating tuna. We feel guilty about our complicity in exposing our children to hazards that may have contributed to their autism.

Ginger puts our guilt into perspective. It’s a good read.

Tuesday, December 06, 2005


For months now I’ve been trying to understand why there should be such a gulf between the neurodiversity community and the biomedical communities. Of course, to call either group a “community” is a bit of a misnomer. There’s enough diversity of thought (euphemism alert: “diversity of thought = rancorous disagreements) that both sides claim ownership of the adage about herding cats. But certainly the conflict between the two groups seems insurmountable at times.

I have opined before that the differences in thought between the NDers and the biomeds is really just a matter of semantics, and it really comes down to a single word: “cure.”

I have tried in the past to explain that I don’t think trying to help a child move past the more problematic aspects of autism is irreconcilable with supporting the dignity of autistics. Sometimes, however, it’s hard to be heard when the more extreme members of either community are shouting out absolutes.

One of the voices that sometimes cuts through the noise is that of Ian Parker. I really don’t know much about Ian, except that he occasionally visits this site and leaves great comments. In response to a recent post, and the comments it brought, Ian wrote the following. I thought what he said was important enough to bring it out of the comments section and put it front and center. After quoting a few of the folks who left comments, Ian wrote:

I don’t want to put words anyone’s mouth, but it sounds to me like the authors of some of the comments in this post do not see autism as a disease (in some cases the quote is illustrative, in others I’m also bringing in an interpretation of a pre-existing body of writing). The definition of disease I’m using is

“an impairment of the normal state of the living animal or plant body or one of its parts that interrupts or modifies the performance of the vital functions and is a response to environmental factors (as malnutrition, industrial hazards, or climate), to specific infective agents (as worms, bacteria, or viruses), to inherent defects of the organism (as genetic anomalies), or to combinations of these factors.”
Source: Merriam-Webster's Medical Dictionary, © 2002 Merriam-Webster, Inc.

The reason I bring this up is that I may be misinterpreting, but it seems to me that more than a few who subscribe to a ND POV often bundle together the ideas that a) autism is not a disease but another way of thinking, with b) if one believes in treatment for autism (as distinct from co-morbidities) then one is not being respectful, and c) that therefore one either wishes to deny autistics their rights or may influence autistics to feel that they are not deserving. If I’m interpreting their words correctly then I have to disagree.

On the first point, I would suggest that autism can be both a disease and another way of thinking. Some of what I’ve read suggests that a common thread among autistics is a tendency to have an impaired ability (which is NOT the same as no ability) to carry out Emotional Coordination and Experience Sharing. From Dr. Gutstein’s “Solving the Relationship Puzzle,” pg. 33: “While typical children carry out Emotional Coordination effortlessly… it is actually a highly complex process, requiring the integration of a number of different brain centers. Success requires rapid attention shifting, careful observation and evaluation of subtle emotional states, an awareness of personal space and internal reactions to a number of other elements. If at any point even one of the many components does not function, the entire process of Emotional Coordination breaks down.” Presumably this at least occasional “break down” is responsible for some of the social impairments that many with autism face.

If you interpret the condition described in the quote above as meeting the definition of a disease then autism could be classified as such, regardless of views of whether other symptoms (e.g., sensory integration difficulties, etc.) are part of the pathology or “merely” co-morbidities. I would argue that there’s nothing pejorative in the above statement, and that the described condition DOES NOT a priori diminish other cognitive or reasoning capabilities. Difficulty in integrating incoming information does not invalidate the thought processes of autistics, or render them more or less distinct, diverse, or valuable, regardless of whether the thought processes are influenced by genetics, environment, or both. The above does suggest a disease state though. And Kev, just as you mentioned in posts this week that you fear an autism = mercury link may force certain types of treatment on your daughter, I fear that “autism as merely an alternate state of being” lets people off the hook for treating an expensive disease on the grounds that it is not a disease at all.

For the record, my daughter is not part of an RDI program, although it is something that we (my wife and I -- our 29 month old daughter very much enjoys some of the activities but has yet to state an opinion) are interested in pursuing and are currently looking into.

Second, implying that calling autism a “disease” or suggesting treatment shows a lack of respect suggests that disease, treatment, and respect for the person cannot go together. I think it would surprise and anger a lot of people to hear that the three cannot co-exist. Are people with CF considered less worthy of respect? How about MS? Cancer? Angelman Syndrome? Down’s Syndrome? Depression? All of the above are recognized as diseases. Or is autism the only disease for which those afflicted are unworthy?

There is a legitimate concern that some people may see any physical, mental or neurologically based disease as rendering a person less “whole” or less “worthy.” But the issue is with the person who holds such thoughts, not with the person who has the disease. The answer is to educate and enlighten those who hold these opinions, not to deny that the disease exists and label it as an alternate way of being, giving people a way to ignore it.

Third, the linkage is made between belief that autism is a disease and the lack of rights of an autistic person, through either denial by others or lack of assertiveness due to self-worth issues. My daughter is entitled to all of the same rights as anyone else, including the right to treatment (coupled with the right to not be subjected to unnecessary or risky treatments), the right to security of person, the right to an education, and the right to assistance (equality of opportunity) to enable her to become the best, happiest, and most self-actualized person she can be. As a parent I'll do my best to teach her to stand up for herself and exercise those rights. By recognizing her autism and challenging it, my goal is to give her opportunities and choices for her to make that she might not otherwise have. I don’t believe that this will change her personality or thought processes. But I do believe that it will add to her capabilities. Not doing all that I can -- if I believe that it will help her -- would be a denial of her rights.

I will oppose anyone who seeks to deny her rights because they see her as unworthy or less deserving, for whatever reason, including her autism. But I will also oppose those who feel that her right to treatment interferes with who “they” think “they” are or who my daughter should be. I respect others’ right to treat or not treat, depending on their view of risk and effectiveness. But it sounds like not all on the other “side” are willing to allow me the same latitude, implying that I am disrespectful or want to deny them their rights if I disagree with them.

Sunday, December 04, 2005


It’s been quite a week in the autism blogosphere. And at the center of the “firestorm” (as Kevin Leitch called it) was none other than J.B. Handley, the co-founder of Generation Rescue.

Around the time I was trying to explain that I do not subscribe to everything said or done by Mr. Handley and Generation Rescue just because I have the audacity to actually say positive things about him and it, Mr. Handley’s recent cyberprank came to light. For those who have been away from their computer for the last week or so, Mr. Handley purchased domain names that were similar to the names of blog sites of Orac, JP, and Autism Diva. The similarly named sites sent users to the Generation Rescue site.

After much howling and gnashing of teeth -- too much howling and gnashing in my opinion -- JB issued an apology to Autism Diva and relinquished one of the new domains to her, but retained the other new domains. You can read JB’s explanation for yourself -- and judge that explanation for yourself -- in the comments to Ginger’s post on the subject. As for myself, I will not judge JB or his actions one way or the other.

In general, I agree with Ginger’s assessment of the man:

The picture that I am getting of Handley is of a well intentioned, pissed off bull in a china shop. He is mad about what was done, and is being done, to his, and other autistic children; and he is pushing back with his full weight to fix the problem. ... and he has a lot of weight to throw around.

I understand JB being pissed off; I’m pissed off too at what happened to my son and the children of others I have come to know. My anger tends to get channeled a little differently than JB’s, but I certainly understand where his attitude comes from. Still, there’s no denying that JB, on occasion, has pushed the envelope of civility.

Did he cross any lines by purchasing domain names that three bloggers chose to leave unprotected? The on-line debate that sprung from this incident has included accusations of legal, or at least ethical, breaches. Those accusations might be accurate if JB’s intent was to deceive unsuspecting surfers into thinking they were visiting a blogger whose viewpoint is distinctly different from that featured on the Generation Rescue site. I doubt, though, that was JB’s intent. He strikes me as being intelligent enough to understand that nobody is going to believe that Orac, JP, or Autism Diva would ever endorse the Generation Rescue site.

That being the case, I see JB’s little prank as being humorous, albeit a tad sophomoric.

Speaking of humor that some might find sophomoric brings me to the other big event in our little corner of the Web: the appearance of The Proffit Motive. All of a sudden a blog parody appeared, the name being an obvious nod to that noted defender of vaccines and thimerosal, Paul Offit. One section, lampooning the owners of the former blog entitled, exceeds the boundaries of propriety and acceptable satire. Other than that one section, however, the site is wickedly funny, and includes faux comments from stand ins for various familiar names. The objectionable section of the parody managed to open the site up to great criticism, and the critics predictably placed the blame on Mr. Handley. Never mind that JB denied any involvement. And never mind that the satire of The Proffit Motive shows a bit more subtlety than is JB’s style. In the eyes of some, J.B. Handley has become the de facto cause of all things unsavory in the ongoing discussion of autism, its causes, and its treatment.

J.B. Handley has become a much larger figure to those who disagree with the biomedical community than he is within the community. He has become an obsession to many who ignore what some of us have to say, preferring to believe that we are all Generation Rescue clones who believe exactly the same thing. Well, I am getting a little tired of being told what I believe.

As I have said on many occasions, I disagree with JB and Generation Rescue about the contention that autism is nothing more than a misdiagnosis for mercury poisoning. I believe that autism is autism, and is caused by a combination of genetic and environmental factors. Nevertheless, it bears stating that I believe that the most prevalent environmental trigger for ASD in the recent past has been mercury, particularly in the form of thimerosal in vaccines.

With the “misdiagnosis” theme being so prominent a part of the Generation Rescue site, and with JB’s tactics and rhetoric being so extreme at times, some suggest that I should disassociate myself from JB. The first time that was suggested, my immediate reaction was that there was no association to “dis.” I have never met JB, I’ve never spoken with him, and I’ve never exchanged emails with him. But it’s really not that simple; there really is an association of sorts.

First, the most obvious connection is that I have a link to the Generation Rescue site. Frankly, that’s not much of an association. If you look at my links, I include several blogs that deal with ASD, and I doubt that you can find a whole lot of consistency of opinion among us. I even include links to Kathleen Seidel’s neurodiversity site and Kev’s blog, albeit in their own special section (primarily because I’m not sure how they would feel being “associated” with my other links). All of my links are there for a simple reason; all add an important voice to the types of discussions we should be having. That is, these voices would be heard if we all weren’t too busy with silliness.

So it’s not just a link that creates an association with JB. It’s really a matter of us sharing a goal. We both believe that our sons regressed needlessly into autism, and we both want to do something about it. We may disagree on the nature of the problem, but we agree on a major contributing factor. Moreover, we agree on the basic approach to intervening in our sons’ disorder to try and alleviate the resulting dysfunction -- or as we sometimes call it, a “cure” -- although we might not follow the exact same protocols.

JB and I might disagree on many particulars, and his style is certainly not mine, but there can be no denying an association. That does not mean I condone everything he has done or might do. It simply means that I will keep a link to his site, and I will keep the car’s bumper decorated with the “Autism is Reversible” bumper sticker my wife picked up from a Generation rescue table at a conference. It also means that if we ever meet, I will thank JB for what he brings to our struggle.