APRIL

April is upon us: The one month of truly pleasant weather in South Louisiana; the month where our thoughts turn to JazzFest! And it’s Autism Awareness Month.

If you’ve managed to find your way to this blog, chances are pretty good that you’re already aware of autism. In our house, we’re more aware of autism than we really want to be. But one is supposed to observe these events, so I thought I would list a few things about autism of which I am aware.

• I am aware that ⎯ despite what anyone may say to the contrary ⎯ we are in the midst of an epidemic of diagnosed autism.

Does that mean that the actual number of autistics has risen sharply? There is no way to answer that question. A convincing argument may be made for that to be true. On the other hand, it may well be that, from a quantitative standpoint, the number of autistics has remained stable. If that is the case, though, then it seems apparent that the severity of the clinical manifestations by which autism is diagnosed is greater in more individuals than before. In either case, there has to be a reason.

• I am aware that, at least for my family, autism is not a “living hell.” Neither is it a bed of roses.

I try not to blog too much about my son, and what we do for him. I can tell you this. We love our little boy for who he is, and we accept him unconditionally. We do not, however, accept what has been done to him.

Yes, there are many things we can’t do as a family because of l’il Rank’s autism. But we still manage to find joy in one another. I often say that a child’s autism bestows a special gift upon the parents; we get to celebrate little milestones and victories each day that other parents take for granted ⎯ that I took for granted with my other children. Being the father of an autistic child has made me a better parent to all my children.

That being said, autism presents challenges to development and to life itself. There is nothing easy about it, and the strain of dealing with it places a strain on family life. The irony of becoming a better parent to all my children is that there is less opportunity to be that better parent except with regard to the autistic child.

We are painfully aware that not all autistic children develop to become independent adults. Therefore, we fell it incumbent upon us to do whatever we can to see to it that our little boy will be just fine after we’re gone.

• I am aware that there is an unresolved controversy about the role of vaccines as a causal factor in the development of autism.

Some see the vaccine question as being two separate controversies: the role of thimerosal, and the role of live-virus vaccines (primarily the MMR). In all likelihood ⎯ and this seems to be the direction in which the research is heading given the likely involvement of the immune system ⎯ either or both can play a role. Anecdotally, problems with both metal toxicity and immune function are apparent in many autistic children, and treating those problems often results in alleviation of the clinical manifestations of autism.

All that being said, most of us who believe that vaccines played a role in our children’s autism also believe that neither thimerosal nor any live viruses would have caused the damage but for some genetic predisposition.

Are vaccines the only toxic exposure that can cause autism in a genetically predisposed individual? There is no reason to assume that the damage to the immune system caused by vaccines could not also be caused by other environmental insults. Exposure to lead, for example, could possibly be involved. Eating mercury-laden fish is often cited as a source of danger. If damage to the immune system is the key, then it stands to reason that there may be any number of possible insults that could cause problems. But the temporal connection between the rise in diagnoses of autism and additions to the vaccine schedule in the United States cannot be ignored, and thimerosal stands as a very likely culprit.

• I am aware that, for many autistic children, autism is treatable. Of course, the protocols that might be successful with one child will not necessarily work with another. The clinical picture is different for every autistic individual. Moreover, choosing an appropriate intervention implies not just looking at the causal factors in a particular case, but also weighing the known risks against potential benefits.

Okay, I said autism is “treatable.” Does that mean autism is “curable?” That depends on how we define “autism” and how we define “cure.”

If one defines “autism” as a genetic state of being, separate and apart from the clinical manifestations, then it cannot be denied that all of the protocols that could ever be devised are ineffective. On the other hand, if one defines “autism” based on a clinical picture consisting of various behaviors and/or dysfunctions, then anecdotal evidence suggests that successful treatment is possible.

“Curing” is a different question. Again, no known intervention can “cure” a person of his/her genetic predisposition for autism. Functionality, from both educational and social standpoints, is simply too fluid a concept to draw bright-line distinctions. As parents of autistic children, we struggle to find better words: alleviation, easing, healing, etc. Some of that struggle is tied up in the moral debate about the ethics of “curing” autism. Perhaps a better semantic construct could be found, but there is something so convenient about the word “cure” that I still tend to use it, but always keeping in mind the limitations of how far any intervention may take us and also how easily the word can be misunderstood.

The goal for my son is simply put. I want him to be able to function independently in a world he understands and in a world that understands him. I want him to appreciate all of the nuances of interpersonal interaction and of an idiomatic culture. I want every door of opportunity to be open to him.

Some of that requires making society more aware of autism and everything it entails. And some of that requires being aware of what my wife and I can do to help our son handle the challenges of autism.

FAMILIAR FRIENDS WITH NEW PROJECTS

This week saw the launch of two sites that are worth drawing your attention to: a new blog and a new resource page. Both are from familiar voices of reason who are more interested in finding right than being right.

IAN’S NEW BLOG

The bloggosphere has become the great marketplace of ideas. A blogger throws out his/her thoughts and opinions, and a discussion starts among readers who leave comments. Sometimes the ensuing discussions are thought-provoking; other times they are just provoking.

I have been very lucky to receive the comments I get on this blog. For the most part, they have been intelligent and civil. Among the comments that have impressed me the most ⎯ on this blog and on others as well ⎯ are the thoughts of Canada’s Ian Parker. Indeed, I once devoted a post to one of his comments. We do not agree on everything (I am certainly more liberal, maybe more aggressive, on the issue of appropriate interventions), but Ian is one of the most level-headed and open-minded individuals I have come across in the on-line discussions.

I am delighted to report that Ian now has his own blog, A Shade of Grey. His decision to do so stems from his frustration at the sorry state of the debate:

. . . I also see a discussion that is increasingly polarizing, in which accepting that others have different views is giving way to an advocacy that rejects other viewpoints as unenlightened, wrong, or not yet at their level of “awakening”. This used to be a hallmark of the more activist element within the anti-vaccine crowd, but is also becoming increasingly apparent in the “autism is natural variation” crowd too. It is one thing to oppose some of the more contentious attempts to cure autism, e.g. chelation, or lupron (which IMHO is just nuts), or to reject the concept of treatment for oneself. But as this challenge to the more contentious bio-med practices is morphing into a more direct challenge against even mainstream accepted methods of investigating and potentially treating autism, I think it is time for more moderates to join the debate.

Ian’s first post, “Autism ⎯ It’s Not Always A Natural Variation,” is an easily understood lesson in genetics and epigenetics, focusing on the incidence of autism in identical twins. He readily admits that his analysis does not support a specific environmental factor that may act in concert with genetics, but his conclusion is that there may often be an external factor at work. That being the case, Ian’s opinion is that “investigating and potentially treating autism in those cases in which it is ‘caused’ rather than inherited is not a priori an ethical violation of one’s natural genetic expression or right to ‘be’ autistic.” I recommend the entire post to one and all.

Just as there is a wide spectrum in the manifestations of autism, there is a wide spectrum of opinions regarding the causes and proper interventions. I do not think of myself as being “anti-vaccine,” but I am probably closer to that “crowd” than Ian is. Ian seems to be exactly what he pronounces himself to be, a moderate who is tired of the mindless and counterproductive rancor. Honestly held opinions must be subject to challenge if they are worth holding. I, for one, am delighted that Ian is here to keep us all honest.

BRETT’S NEW PAGE

Brett, from 29 Marbles has consistently been one of the most balanced autism bloggers around, often pushing his own views to the side to ask the questions to which there are no easy or pat answers.

Being one of the few people who seems to fit in with all of the different sub-communities in the autism world, Brett is probably the ideal person to create a resource page, and that’s what he has done. It's too soon to say what will set his new page, Autism for Parents, apart from other resources for parents. This what Brett says about his purpose:

My purpose in creating this site is to hopefully help parents navigate the challenges of raising an autistic child. Parenthood is challenging enough when you think you know what to expect from your kids, but when you really don’t have a clue it can feel like you’re breaking new ground that no one has been on before. I’m here to tell you that there are many others who have trod this ground. My hope is that those experiences of other parents (myself included) will help finding your way a bit easier.

In the past, Brett has written of his hopes for what some of us call “cure,” “healing,” “alleviation of dysfunction,” and/or “[insert favorite euphemism for ‘cure’ here].” At the same time, he understands that there are social, cultural, political, and economic issues that transcend the scientific possibilities. Sometimes the question is not can we cure autism but should we cure autism. For my family, the answer is “yes,” but I have to acknowledge the same may not hold true for everyone.

My hope is that Brett stays true to form, and that he provides solid information and links concerning the interventions many of us are using, as well as a balanced guide to the debate on whether such interventions are the right thing to do.

A VERY MINOR MILESTONE

I always laugh when anyone implies that this blog is an influential voice in the autism debate. I look at my Site Meter™ numbers, and the obvious question is “who the heck is out there to be influenced?"

The internet is indeed a wondrous thing. After talking forever about creating a “marketplace of ideas,” the world finally did so. Now anyone who thinks their opinion has any value, can throw a few thoughts out into cyberspace and see if anyone agrees. It occurred to me that it might be cool to be a part of all that, but I quickly discovered that I had as much to say about the sorry manner in which the debate on autism was being conducted as I did on the substantive issues. I don’t think I’ve had much of an impact on either the debate or the way it is conducted, but somebody out there reads and either agrees or disagrees with what I write.

I installed Site Meter™ a week or so after getting the blog on-line about eight months ago, so it accounts for nearly all of the visitors I have had (those who came before the meter’s installation were part of what commerce usually calls a “soft opening”). Sunday night, around 10:22 p.m. CST, I passed a milestone: my 10,000th official visitor.

Ah, 10,000 hits . . . or as Orac calls it, a “slow week.” But what the heck, I just feel gratified to get any readers at all.

It occurs to me that I could get better numbers if I posted more frequently like some people do. But unfortunately I keep pretty busy between my job and doing my share of the child-care thing.

I have also noted that my numbers shoot way up when I post something that people find controversial. I guess most people love a good argument but frankly, I get enough of that on the job. Although I won’t shy away from a fight, I really don’t need to go looking for one. So I guess I have to be content with my relatively low number of visitors. I like to think I attract quality as opposed to quantity.

Here’s what I know about number 10,000. He or she logged on from Gladwyne, Pennsylvania (using, ugh, Internet Exporer), and stayed about two-and-a-half minutes. There was no referring page, listed, so he/she apparently knew his/her way to the site before this visit.

So, number 10,000, let me offer you my thanks, along with this laurel and hearty handshake. Please accept them on behalf of all the other people who stop by. Return when you will, and know that all are welcome to join in the discussion.

ANOTHER STEP

By now, many of you have seen the news item from few days ago about the results of a new thimerosal study from the M.I.N.D. Institute. According to Isaac Pessah, the toxicologist who led the study: “What we found was rather unexpected.”

Using mice (unlike Dr. Mady Hornig’s study, this group used a non-susceptible strain), the group found that thimerosal, proportionate to the amounts a child might receive in vaccinations, had an impact on dendritic cells, which are key elements of the immune system. As Dr. Pessah explains:

“They take up those foreign substances [identified in the article as bacteria, viruses or other antigens such as vaccine ingredients] and process them,” he said. “Once they do that, they migrate to the lymph nodes to present their information to the other immune cells, which can activate a global immune response.”

What the study found was that dendritic cells are “extremely sensitive” to thimerosal exposure:

Specifically, the thimerosal disrupted the normal biological signals that take place in cells, Pessah said. At lower concentrations, the signal disruption caused an inflammatory response; at higher concentrations it caused cell death.

“One could imagine that as concentrations of thimerosal vary in the organisms, you could get a plethora of unwanted or uncontrolled effects,” Pessah said.

And those effects could vary depending on the organism’s genetic background, he said.

The significance of all this should be apparent to anyone who has followed the ongoing controversy surrounding the possible (some of us would say “probable”) link between thimerosal and the diagnosis of autism. Many autistic children have immunological problems including allergies and gut problems. Many of those problems appear to relate to the yeast issues that may or may not be linked to some autistic behaviors.

Moreover, the theorized damage thimerosal does to the immune system may help explain how live-virus vaccines, such as the MMR, may do further damage that helps trigger diagnosable autism.

The research group has been careful to avoid calling their findings a smoking gun. And they are right; the study does not, in itself, prove a connection between thimerosal and autism. Dr. Pessah calls it a “framework” for further study. I call it another step in a long journey. But I believe that when the day comes that we say the connection has been proven, we will look back on this study as one of the most significant steps on the path.

For those of you who might be interested, the study’s abstract, with a link to a free pdf file of the complete report, which will be published in Environmental Health Perspectives, may be found at this link.

A FRESH LOOK

Congress has asked the National Institute of Environmental Health Sciences (“NIEHS”) to take a fresh look at the possible link between thimerosal and the development of autism. A letter sent to the NIEHS by eight members of Congress (Senators Joseph Liberman and Debbie Stabenow; and Representatives Dave Weldon, Dan Burton, Carolyn Maloney, Joseph Crowley, Chris Smith, and Maurice Hinchey) explains the reasoning. It reads in part:

We hope that NIEHS can bring its expertise to the issue of thimerosal. Many of us in Congress are concerned about the possibility of an association between autism and thimerosal in vaccines. While we understand that the Institute of Medicine (IOM) has determined that the evidence thus far does not support an association, we know that for too many the issue is still not resolved. The exposure of American children from 1990to 2001 to thimerosal was unique it was 75 percent greater than their European counterparts who are the focus of the majority of the epidemiological research on this issue upon which the IOM relied. This period coincided with an autism epidemic now affecting I out of every 166 children. Additionally, thimerosal is by weight 50 percent ethylmercury, which is a potent neurotoxin. The level of thimerosal in these vaccines exceeded the EPA oral daily dose limit for methytmercury by over 120 times at the 2, 4, and 6 month pediatric visit. Therefore, we believe that there is room for a closer look on any potential association between thirnerosal exposure and the risk of autism, both to learn new information and to solidify the public’s trust in vaccines.

The Congressional letter notes the IOM’s reliance on the Vaccine Safety Datalink (“VSD”), maintained by the Centers for Disease Control (“CDC”). Indeed, the big complaint with a recently published study by the Geiers is that they used a less-reliable source of data. The clear intent of Congress is that we compare apples to apples in determining whether the reduction of thimerosal use in vaccinations has had an impact:

Thus far, with regard to thimerosal and autism, the CDC has studied and reported on this database only once. That study was based on data collected prior to the removal of thimerosal and failed to explicitly compare the outcomes of children who received thimerosal-containing vaccines (TCVs) with those who did not. The VSD now includes live years of additional data. We are aware that the CDC is presently preparing to conduct further analysis of the VSD to investigate the post-thimerosal data. Unfortunately, as the lOM pointed out in its April 2005 report on VSD access, a CDC-led study on thimerosal and autism could be viewed with much skepticism and may not he accepted by the growing number of parents with concerns about vaccine safety and the possible links between thimerosal and autism. If the federal government is going to have a study whose results will he broadly accepted, such a study cannot be led by the CDC. It is for these reasons we believe that NIEHS is the most appropriate entity to lead such an investigation.

Specifically, Congress has asked the NIEHS to convene a workshop with representatives of “the CDC, the autism community, members of the public concerned about vaccine safety research, and external academic researchers” so that everyone can try to agree on how to use the VSD information to answer the big question: has thimerosal contributed to the increased incidence of autism?

This will be an important inquiry, to be sure. It’s hard, though, to get too excited about the prospects. First, the Congressional letter was not completely accurate when it referred to the removal of thimerosal from vaccines. As is well-known, thimerosal is still widely used as a preservative in most flu vaccines. Moreover, the commonly held belief that most “preservative-free” vaccines are “thimerosal-free” has been challenged. Although thimerosal is not used as a preservative is most vaccines, it is still used as part of the manufacturing process of some vaccines. Filtering the thimerosal out may be an imperfect exercise, and there is an ongoing debate as to the exact quantity of the “trace amounts” that are being found.

Still, it cannot be denied that the thimerosal exposure in today’s vaccines is negligible compared to what it was. And so the numbers should be going down if thimerosal is a causative factor. That does not necessarily mean there are five years of post-thimerosal data available. Considering the shelf life of the vaccines manufactured prior to the phase out, along with the delay in diagnosis for autism, there may only be a year or two of solid numbers, which may not be enough to show a real trend.

Another thing that needs to be addressed is the combined impact thimerosal may have with other factors, including live-virus vaccines. If the input from the “autism community” is limited to concerns over whether “autism is a misdiagnosis for mercury poisoning,” the study may well miss the possibility that thimerosal exposure is but one in a series of insults to the immune system that may eventually lead to a diagnosis of autism.

I remain skeptical that even a well-designed epidemiological study can prove or disprove biological causation. Nevertheless, to the extent that epidemiology can provide important clues, I am happy that we may have a truly independent study.

SEEKING THE TRUTH

As I have made clear on a number of occasions, I most assuredly am not a scientist. Like most people with a decent and well-rounded education, however, I am capable of understanding how science works.

I have been worried about how long it would be before we can gain a complete understanding of autism spectrum disorders because of the differences in clinical indications among autistic individuals. Finally, it seems that someone in the scientific community gets it. The M.I.N.D. Institute (Medical Investigation of Neurodevelopmental Disorders) at the University of California, Davis announced a new project last week. The press release read, in part:

Called the Autism Phenome Project, the large-scale, longitudinal study will enroll 1,800 children ⎯ 900 with autism, 450 with developmental delay and 450 who are typically developing ⎯ who will undergo a thorough medical evaluation in addition to systematic analyses of their immune systems, brain structures and functions, genetics, environmental exposures and blood proteins. Children will be 2 to 4 years old when they begin participating in the study, and their development will continue to be evaluated over the course of several years. The first phase of the research is funded by the UC Davis M.I.N.D. Institute and philanthropic donations.

“Children with autism clearly are not all the same,” said David G. Amaral, research director of the UC Davis M.I.N.D. Institute and co-director of the project. “The tremendous variation leads us to believe that autism is a group of disorders rather than a single disorder ⎯ several autisms versus one autism. We are determined to provide the specific biomedical and behavioral criteria that accurately define distinct subtypes.”

I am not as familiar as I would like to be with the Institute. My general impression is, though , that regardless of the leanings of any individual faculty members, the M.I.N.D. Institute as a whole has shown a very balanced approach to the various controversies surrounding what many of us believe to be an epidemic. The divergent viewpoints of cognitive behaviorists and biomedical scientists have all been entertained with an apparent aim to find the truth.

Unfortunately, there are no shortcuts to the truth. Findings after several years will, frankly, come too late for many of us to make practical use of them with our children. Even so, this project, in the words of Dr. Amaral, hopes to “shorten by decades the road to discovering the causes and treatments of autism.”

Until the Phenome Project has published its findings, and perhaps afterward, the bitter arguments over causes and treatments will continue. We can only hope that the individual members of the team can lay their egos aside to keep their eyes on the prize, that their eventual findings will actually provide a true insight into ASD, and that those of us who have a stake in the answers can all lay our individual egos aside to accept the truth if the truth is indeed laid before us.

THE COURAGE OF CONVICTIONS

The history of race relations in New Orleans is as unique as everything else about the city. Perhaps it is because of the history of free persons of color even in the evil days of slavery, or perhaps it is because of the fluid boundaries between neighborhoods in the city, that saw predominantly black blocks next to predominantly white blocks, but New Orleans dealt with the civil rights struggle earlier than most cities in the South.

Tensions didn’t resolve completely and, like virtually everywhere in this country, we still have a long way to go. Nevertheless, progress came earlier to New Orleans than many other places. That’s due to the courage and integrity of people of good will, both African-American and white.

One of the pioneers of the struggle in New Orleans passed away the other day. Jack Nelson was a white lawyer, a member of the privileged class who could have sat on the sidelines. Instead, he incurred the wrath of his peers by joining a noble cause and lending his personal credibility to able African-American attorneys whose valid arguments otherwise might have been summarily dismissed by the white establishment of the time.

Mr. Nelson defended activists who sat at white-only lunch counters and those who dared to stand up to the Klan. He helped to bring pressure on Tulane University to speed up the desegregation of that institution.

The Times Picayune published a moving obituary in this morning’s paper, which I encourage you to read. It includes some of Mr. Nelson’s own words, including a story that helps to explain what prompted this man to risk so much for people he didn’t know:

I remember one day I was at the park with my two little daughters and they were pulling me to go on the carousel and I was resisting. And finally we were approaching the carousel and I saw a black man standing there with his two daughters and we passed him and we got on the carousel. And as we went around, I watched this fellow as he was standing there, holding his daughters’ hands. And I kept wondering what he was telling them.

They were just standing up there like little statues. They wanted to go on that carousel as much as my daughters did and yet they were just standing there. I kept wondering what would I tell my daughters? No, you can’t go? Well, why can’t we go? That was an important moment in my life: It made me say, “There’s something wrong. This isn’t right.”

I am constantly amazed that the pivotal events of some men’s lives would go completely without notice or thought by most of their contemporaries. What sets the great ones apart is the vision to see what is important and the willingness to do something about it. I practice a profession that includes the skills and position to change the world, and yet so few of us leave any real legacy. People like Jack Nelson put me to shame and make me proud at the same time.

A RETURN TO CIVILITY

I apologize for being away for so long; it’s been a little hectic at work. In the time I’ve been away from blogging, I’ve been thinking a lot about a post ballastexistenz did around the time we were having a somewhat strained conversation going on here a couple of weeks ago.

I became a regular reader of ballastexistenz a couple of months back after I arrogantly pointed out that I included links on this page to blogs expressing various points of view in the autism world. Anne Bevington very sagely pointed out that all of the blogs I linked to were by parents, with none by adult autistics. So I went on a search to find some good ones, and I did. The best of them is by ballastexistenz. It’s not always a feel-good read, and I sometimes see things that strike a little too close to home. But she writes very well ⎯ a compliment that would be the same if she was neurotypical by the way ⎯ and I like a good challenge to my psyche and opinions every now and then.

In any event, a couple of weeks ago, ballastexistenz posted a piece entitled Pretty social illusions that struck a nerve:

There’s a group of people out there, fairly amorphous to me because I do not keep track easily of who is who (so I hope I don't get asked who it is), who seem to believe something like this: “If we are nice to autistic people, and we make appropriate ritualized gestures of ‘respect’ towards autistic people, and we get along socially with autistic people, and we meet them halfway, then it does not matter what we do to our children in the name of helping them, because our children are all individuals, and we are meeting these autistic adults halfway by deigning to at least talk to them.”

Some autistic people have been okay with this, encouraged by it. I have been mostly mystified by it.

There are some who have accused me from time to time of using politeness as a shield to hide behind as I spread a message of hate. So my first thought, in light of what was going on over here at the time, was that this was directed at me. Then I heard the voice of Carly Simon in my head, singing “You’re so vain; I bet you think this song is about you . . .”

Regardless of who ballastexistenz was referring to, her words prompted me to examine my actions and motives. The message I got from her post (and I would encourage anyone who is interested to read it as anybody’s interpretation of another’s words cannot perfectly capture the intent), is that some of us use the trappings of manners and respect to hide a dangerous mindset. I hope that’s not the impression I give anyone, although some comments to my pasts posts indicate that impression is out there.

I’m still relatively new to the world of autism, and I’m trying to find some answers. Part of my process for doing that is to talk with people ⎯ including people who agree with me and those who don’t. But I cannot listen to what someone else is saying if I’m shouting. So I try to maintain an air of civility.

I have written before of the lessons of respect I learned from my father. He also taught my brothers and me lessons in manners. For him, and for us, politeness was never a veneer to hide ugliness. Politeness was, and is a means of showing respect.

As an attorney, I am guided by certain rules when making an argument. For example, when I write an appellate brief, I must comply with the following:

The language used in the brief shall be courteous, free from vile, obscene, obnoxious, or offensive expressions, and free from insulting, abusive, discourteous, or irrelevant matter or criticism of any person, class of persons or association of persons, or any court, or judge or other officer thereof, or of any institution. Any violation of this Rule shall subject the author, or authors, of the brief to punishment for contempt of court, and to having such brief returned.

Uniform Rule 2-12.4, Louisiana Courts of Appeal

The reason for that rule is not just to keep things pleasant. The idea is to keep everyone’s focus on what really matters.

Yes, I tend to be polite and respectful. It’s how I was raised; it’s a part of who I am. Respect, however, does not mean an agreement with everything someone else says. Respect means understanding that someone else just might be correct about something. So I try to listen. Sometimes, I go back and reexamine an issue. Lately, I’ve been reexamining some of the things that were said a couple of weeks ago, and who knows where that will lead.

Civility and respect are not silly veneers intended to mask anything deceitful. They are important means of helping to build a better society in a pluralistic ⎯ a diverse, if you will ⎯ world. These are the lessons I try to pass on to my children.