MS. CLARK

[Note: the following post is NOT about Dr. Buttar or about the relative merits of IV-EDTA; it’s about who I am and why I do this. Please keep that in mind when posting comments.]

Like most bloggers, I spend a little time every now and then checking out what other people are saying. I try to include blogs by people with whom I disagree and yet respect. One such blog I visit on occasion is Kevin Leitch’s Left Brain/Right Brain. Although Kev usually maintains an appropriate tone of civility, the public comments to his posts always seem to degenerate into bitter mud fights because people on both sides of the issue can’t seem to control themselves. For that reason, I decided not to post comments there as often as I once did. Sometimes, though I feel compelled to join in the conversation, hoping to make it a dialog of diverse ideas, but a recent experience shows the folly in doing so.

Kev posted his thoughts on recent reports that Dr. Rashid Buttar now offers IV-EDTA as a chelation protocol. I really don’t know Dr. Buttar; in fact, I may be the only person on the internet that does not have strong feelings one way or the other about the man. But I do maintain an interest in various biomedical protocols that are being tried in the autism world, and that interest includes finding out why IV-EDTA has been used by some doctors. I left a simple comment on Kev’s post trying to explain its place in the biomedical world, and, as could be predicted, the attack came. This time, it was from “Ms. Clark.”

Here’s an excerpt from the first salvo she fired in my direction:

Wade Rankin, you have no idea what you are talking about.

…

I wish you and your friends, and people like Craig Westover, would stop influencing parents to chelate their kids when you yourselves have no idea of what you are discussing. You pass around third-rate, third-hand knowledge and if you think that you couldn’t contribute to another child’s death you are wrong.

Where is your conscience in this?

I’m really appalled at your behavior, not that you should care what I think of you, but I really must comment. I hope you will all stop playing doctor before another child is killed.

Ms. Clark gives me far too much credit. If she saw my Site Meter reports, she would know my capacity for influence is pretty darn limited. Heck, I think I’m probably on a first-name basis with everyone who visits the site. And judging by the comments that are usually left, I can’t think of anyone who I’ve influenced to try any particular protocol. I can only think of one post that I devoted to the particulars of biomedical treatments for ASD, and that one was pretty much ignored (for good reason; it was not my best stuff). Even that one emphasized that parents who wanted to consider a biomedical approach should only do so in consultation with a qualified physician, and should educate themselves on every aspect of the process. I made the same point that I state pretty often whenever and wherever I write about all this; there is no one-size-fits-all solution.

After I responded at Kev’s blog to some specific mischaracterizations by Ms. Clark, she favored me with yet another comment, and that’s when I decided to write this post. I suppose I could have posted it as another comment to Kev’s blog, but that would have taken the discussion too far from his original point. In any event, Ms. Clark’s second comment that spurred me to respond went back to her original accusation:

You are influencing people to believe that autism can be caused mercury poisoning. That’s what I believe.

If my opinion is not true in the least, then no parents will say, “I’m sorry my child is dead now. I wish I hadn’t believed that autism was the result of mercury poisoning, but we thought that Mr. Rankin had some crediblity and that he must know what he was talking about since he’s a lawyer and educated, and he’s so nice, too.”

Ms. Clark probably doesn’t read much of what I write. While it’s true that I believe thimerosal exposure played a key role in the dramatic increase in autism rates in recent years, and I further believe it played a key role in the development of ASD in my own child, it’s not the whole story. Indeed, I am somewhat of a heretic in that I think ASD is too complex of an issue to place all of the blame on one factor. But that being said, I’ll accept as true that I have stated that mercury poisoning can help trigger ASD. I still find Ms. Clark’s estimation of my influence -- and her underestimation of the intelligence of parents with children on the spectrum -- to be laughable.

I can just picture parents sitting around discussing worries over their child, and one says to the other: “Let’s go to that nice lawyer’s blog … you know, the one who talks about everything but science. He’ll tell us what to do.” Give me a break. I concentrate my efforts on issues other than the science of autism. I tend to address educational issues, the semantics that unfortunately separate the biomedical and neurodiversity communities, the hypocrisy of some vaccine manufacturers, the ridiculousness spouted by one particular doctor, and the propriety of seeking a cure for ASD. The closest I come to writing about scientific issues comes when I discuss the lunacy of the IOM’s reliance on very flawed epidemiological studies. To a certain extent, science has to be mentioned as part of my general discussions, but science is not the focus. I’m more interested in improving the tone of the dialog than I am in trying to win a debate.

Ms. Clark apparently feels my failure to debate anyone on the scientific studies is because I either haven’t looked at the science or because I don’t understand it:

You have bought a lie if you think that in any way your child has become autistic because of mercury in vaccines and that any form of chelation will help an autistic child become less autistic.

If you can counter my statement with science then do it. But you can’t.

I have looked at the science. I don’t know what you are looking at but it’s junk if it’s telling you that any treatment to remove any heavy metal is going to cure your child or in any way rewire his brain.

Teaching him can rewire his brain, up to a point. Mercury is not going to stop him from learning and taking out imaginary or real mercury is not going to improve his learning to the point where he can learn not to be autistic.

What about the minicolumns, what about the Purkinje celsl[sic]? What about the extra white matter. Have you read any of Casanova or Courchesne’s work?

It might surprise Ms. Clark to know that I have looked at the types of studies she mentions, including some of the work of Dr. Manuel Casanova and Dr. Eric Courchesne. In fact I even understand them pretty well. The fact that certain brain architecture is found in some autistics does not necessarily tell me that the clinical indications by which our children are diagnosed with ASD were not triggered in whole or in part by an environmental insult. Nor does the fact that an increase in brain size -- after birth -- has been noted to coincide with diagnosed autism does not necessarily mean that environmental insults, including but not limited to mercury poisoning, do not play a role in causing autistic dysfunction. A decrease in Purkinje cells certainly makes sense in all models of autism to explain the hows but not the whys.

All the studies Ms. Clark mentions, along with numerous genetic and neurological studies not usually cited by “our” crowd, have a place in our developing understanding of the autism spectrum. The biological and clinical studies we more often cite (e.g., James, Burbacher, Hornig, Deth, Wakefield) also contribute to our understanding of the problem. But none of the studies begins to tell the whole story. Despite a mountain of paper, science has only begun to scratch at the surface of autism. We can’t even agree on what autism is!

And that’s why I avoid debating science; there’s simply not enough to debate. Until we know enough to start putting together the pieces, all we can do is talk in broad generalities. That’s why the main comment I make on science is that we need more of it.

I will gladly admit that Ms. Clark may know more than I about the specifics of some studies bearing on a particular model of autism. But just as I believe ASD is too complex to be explained by an explanation that it is merely misdiagnosed mercury poisoning, I likewise believe that neurological studies do not tell the whole story. I cannot and will not debate someone who refuses to acknowledge that autism is about more than what the brain looks like.

It is no secret that I believe we are in the midst of an autism epidemic (something Ms. Clark disagrees with, I know), that the epidemic results from increased exposure to environmental insults in genetically predisposed children, and that it may be possible to reduce or eliminate some of the clinical manifestations of ASD by various protocols. I don’t claim to be an expert in any of this. I am only a parent trying to make sense of it all.

THE OTHER EPIDEMIC

Lately, it seems I’ve been talking a lot with other parents about school issues. Every parent of an autistic child in a public school knows the frustration of trying to get appropriate services for their child. Every school system in the nation that accepts federal funding is obligated to provide those services under the Individuals with Disabilities Educational Act (“IDEA”). Getting an agreement on what is “appropriate,” however, can sometimes seem as likely as the New Orleans Saints making it to the Super Bowl.

Recently, I wrote of a relatively positive experience in dealing with our local school system. For the first time, the movers and shakers in the system (as opposed to the principal and teachers who have supported us for awhile now) met with my wife and me, and actually seemed interested in cultivating a partnership to provide my son with the best possible opportunity to advance.

I remain cautiously optimistic about this year, but progress is agonizingly slow. Our son is getting more attention on the basic services the school is used to providing (i.e., a little speech therapy and a little sensory integration). The more intensive therapies autistic kids need are still absent, but there are definite signs that we might start seeing them. All in all, our experience is a little better than it was last year. Sadly, that little bit better beats the experience many other parents across the country are reporting.

Why do most school systems do such a bad job teaching autistic kids? In part, it’s money. Delivering the intensive therapies our children need costs money, and many systems are already stretching every dollar (although many waste more than they stretch). In recent years it has just been easier for schools to deliver minimal services and see which children can improve on their own. Those who can’t find their own way wind up in segregated classes where they won’t distract the typical kids. Special autism classes fill a real need for kids that aren’t ready for an inclusive setting, but too many systems use them as a final destination.

It would be interesting to see how many kids could successfully stay in inclusive settings if they received the therapies they need on an individual basis. For some children, that means ABA, Greenspan for others, Verbal Behavior for some, and RDI for others. Instead, most schools cling to a one-size-fits-all philosophy, and they institute one-size-fits-few programs that incorporates very little from any of the above-listed programs.

Tina Giovanni writes a terrific blog called Autism 911. Tina is a teacher with years of experience working with autistic children, and she brings a unique perspective to the discussion. Recently, she used a very descriptive phrase for the attitude of too many school systems: “the epidemic of denial.”

It’s too true. As long as schools can deny there’s a problem of immense proportions, they can redirect their resources in other directions they may feel will reap greater rewards. In the meantime, our kids don’t get what they need to learn to function independently.

I’m still not sure how serious our local school system is about being partners in our son’s development. We’re determined that he will stay in an inclusive setting, and that he will progress both academically and socially. Although the change in attitude by the system has not been as complete as we would like, there has been enough movement that I am willing to assume that the administration is acting in good faith. And isn’t that ironic? A school system that has its resources stretched because of Hurricane Katrina is finding a way to bend and stretch a little more, while other systems across the nation are still finding ways to deny.

A NINE-YEAR OLD FINDS THE WORDS

You may be aware that a documentary, entitled Finding the Words, has been produced for airing on PBS. The film will examine the hypothesized link between vaccines and the onset of ASD, as well as the use of biomedical interventions. Originally scheduled for this past summer, it is apparently now slated for April. In the meantime, the San Fransisco Chronicle posted a story about one of the children featured in the documentary.

Nine-year old Humza Iqbal developed many of the signs of autism at an early age. Judging by the account in the Chronicle, Humza was profoundly autistic. Over the years, his parents tried various behavioral therapies, with limited results. Then, after seeking a way to help her son’s gastro-intestinal problems, Humza’s mother, Sara, found a new path.

She found information on the Internet about diets that were free of gluten -- wheat protein -- and casein -- dairy protein. Other parents said they’d found these diets alleviated gastrointestinal symptoms and resulted in behavior and learning improvements. She ordered videotapes about the dairy- and wheat-free diet and started Humza on one. She began attending conferences run by Defeat Autism Now, an education and advocacy group that believed autism could be treated biomedically.

In the first days of the diet, she agonized as he refused foods she offered him. But then, slowly, he started to eat pureed food. Within about three weeks, she said, she noticed a difference in his digestion problems and his behavior. After a month and a half on the diet -- and receiving behavioral therapy at the same time -- Humza began looking at his parents.

Sara Iqbal delved deeper into the biomedical approach, adding supplements and weekly intravenous glutathione treatments. As is commonly reported among those of us using a biomedical approach, the Iqbals noted the association between new improvement and the addition of new elements into the protocol.

And what was the result? This is the observation by Katherine Seligman, the Chronicle reporter:

He has grown into an articulate child who excels in school and has friends and play dates and all the ordinary trappings of a 9-year-old life. He comes home from school, does his homework (“I don't like to procrastinate,” he says the first time I meet him), then might read, pop in a video game or play with his sisters who, he admits, sometimes bug him.

Predictably, Humza’s pediatrician says he’s not sure whether the remarkable progress came about because of the behavioral therapies, the biomedical ineterventions or just the passage of time. But Humza’s mother has a definite opinion.

“Had we stayed with the conventional therapies, I don’t think we would have made the initial headway we made in the first month (with biomedical treatments),” said Sara Iqbal. “We’d add another supplement and boom, we saw a change. We looked at it as a disease. The more we started fixing, the more he improved.”

Is Hamza “cured?” The article does not use the word in relation to his progress; in fact Ms. Seligman notes that a part-time “special circumstance assistant” is still assigned to the young man by the school district. That aide, nevertheless, is rarely needed, and:

A school psychologist who observed Humza in early October found he consistently paid attention in class. He asked questions and practiced independently in his handwriting workbook. He got along well with other kids and they appreciated him, she wrote. Overall, she concluded, his social and academic behavior was “appropriate when compared to his peers.”

So Hamza clearly needs less help than most autistics in dealing with school. But again the question becomes whether he is “cured.”

A few weeks ago, I was part of what Ginger called a “blog swarm,” addressing the reason many of us are seeking what some call a “cure” to autism (see Why and Why, Part 2). One of the questions that came out of those posts was whether it was appropriate to cure the dysfunctions of autism when that same process might diminish the cognitive strengths that often accompany the condition. It was a fair question, and I concluded that potential improvement had to be weighed against potential improvement in individual cases.

The Chronicle article does not clarify what special abilities, if any, Humza had before his parent’s remedial efforts, or even whether he was able to even communicate any abilities or gifts he had. After the intervention, however, Hamza seems to be a child of above-average intellectual abilities. Just look at the second quote from the article above; how many nine-year olds correctly use the word “procrastinate?”

Humza has scored at an advanced level in math, and he also has literary interests. The following is from the interview he had with the reporter:

We started talking about what he likes at school -- P.E., especially a kickball game called Two Touch. And he loves reading – “Charlie and the Chocolate Factory,'” “James and the Giant Peach” and “Matilda,” although the author “doesn't use as much craft” in that one, Humza said.

Hamza’s story may just be an anecdote. I’m sure Sara Iqbal can accept that. It seems, though, that we hear more and more of these anecdotes every day.

Autism is different for each autistic person. There is no one-size-fits-all solution. But Sara Iqbal seems to have found an answer for her son. Of course, some do not think a solution is needed for their own condition; not everyone wants to be “cured.”

How does Hamza feel about being “cured?” The Chronicle article doesn’t specifically address that, but a clue might be found in a letter he wrote his mother.

In January, Sara Iqbal returned from a trip and was annoyed to find the house in such a mess and not one of her three kids willing to help clean up. Humza went upstairs to finish his homework, but came down later, handed her a letter and hugged her. “I thank you for everything not just now but always,” he’d written. “I fully thank you I can’t even write how much I thank you because it is way, way, way, way (x10) too long. Love, Humza.”

GEAUX TIGERS!!

Final score:

LSU 16

Bama 13

OF MICE AND MERCK

A reporter for the Los Angeles Times recently wrote of a major development in the treatment of learning disorders. It seems that clinical trials are about to start on protocols for certain learning disabilities, which scientist believe can be alleviated with Lovastatin, a drug used primarily to treat high cholesterol. Lovastatin is marketed by Merck under the name, Mevacor.

What does this story have to do with autism? Nothing. What this story highlights is hypocrisy.

The newspaper story doesn’t mention whether Merck funded the laboratory studies that gave rise to the upcoming trials, but the company will surely participate in the trials. And if all goes well in the trials, Merck stands to make a lot of money. Of course, there is nothing wrong with a corporation making money or helping to develop treatments. But participation in the trials and subsequent profits would be an act of hypocrisy on Merck’s part.

The discovery that Mevacor might be useful for this purpose came about when Dr. Alcino Silva, a neurobiologist at UCLA, was approached by a former student who hypothesized that statins would impede a body’s overproduction of a protein called Ras, which many believe leads to some learning disabilities. So how did they test the hypothesis?

Postdoctoral fellow Weidong Li in Silva’s lab tested the theory using specially bred rats that had the neurofibromatosis 1 mutation and had previously been shown to have learning problems similar to those seen in humans with the disorder.

In one test, he trained adult mice with the mutation to follow a blinking light to obtain a food reward. After the animals received the drug, their performance improved 30 percent so that they outperformed normal mice.

Two other tests provided similar results.

“We think we have a real, fundamental reason to be optimistic,” Silva said. “Now, we are ready to go and treat the human disorder.”

Many of you are probably aware of the ground-breaking study by Dr. Mady Horning, of Columbia University, which showed the impact of thimerosal on immune-suppressed mice. That study provides much of the foundation for proving the connection between thimerosal and autism.

I’m really not certain if Merck promulgated a formal response to Dr. Hornig’s study, but we may safely assume that they did not issue any proclamations using the adjective “ground-breaking.” We do know that various parties, including one doctor with a connection to Merck, criticized the study, with the most common criticism being that mice do not provide a good model for the human brain for things like developmental disabilities.

Now Merck stands to profit from experiments that rely on the reliability of mice brains as being good models for humans. I can only hope that Merck will take one of two actions. They can issue a statement acknowledging that Dr. Hornig’s use of mice in her experiments was valid (I know better than to expect them to agree with the results of the Hornig study). The second option is to insist that language be inserted into the informed consent forms for the trials, telling the patients (or the patients’ parents) that the manufacturer of the drug to be administered cannot vouch for the reliability of the underlying experimental work because they do not believe mouse studies to be valid.

Silence would be hypocritical.

HERE WE GO AGAIN

I suppose I should be grateful to Paul Offit. It seems that any time I start to worry that I won’t be able to think of anything to write about in this blog, Dr. O goes and says something that cries out for a response. Well, he’s done it again.

Not too long ago I posted my thoughts on Dr. Offit’s paranoia about the American legal system. Once again, he has seen fit to pontificate on that subject, and once again he shows just how little he knows about the law and how little he thinks of lay people.

In an editorial called “Vaccine Courts,” published in the Long Beach Press Telegram, Dr. Offit discusses why he thinks the so-called “vaccine court,” which is really part of the United States Court of Claims, is far superior to the court system to which any other defendant would be subjected. And he does it in the most irrational manner.

Dr. Offit devotes the first six paragraphs (of a 16 paragraph article) to an absurd comparison between the American court system and the Instant Replay system used by referees in the National Football League. In Dr. O’s opinion, submitting cases against vaccine manufacturers to civil juries is akin to submitting instant replay decisions to 12 non-football fans.

The first reaction to a comparison between a foot ball game and a serious matter concerning the legal rights of our children is to take offense, but it’s really just Dr. O’s rather clumsy way of saying he too considers legal proceedings to be serious:

Few football fans would accept this. Yet we're perfectly willing to accept this scenario when it comes to complex questions about pharmaceutical products and medical wrongdoing. Jurors, without any knowledge in these fields, are specifically asked to determine their validity. They often explain their verdicts by first saying ‘‘The science was way over my head, but ...”

For a guy who supposedly doesn’t become involved as an expert witness, Dr. Offit seems to think he knows what happens with jurors. With all due respect, Doc, I think I have a little better idea.

For over 20 years, I have litigated civil cases, almost exclusively defending corporations and insurance companies. Most of those cases have involved technical evidence of one sort or another, including issues of medical causation, engineering, and various scientific fields. Customarily, after a verdict is rendered, informal discussions tend to spring up between lawyers and jurors in the courthouse hallways. The lawyers like to hear what they did right and what they did wrong, and the jurors always have questions about those little things that can’t come out in the courtroom. Not once have I heard jurors declare after a trial that the technical information was over their heads. Rather, what I usually hear is gratitude that the evidence was presented in such a way that they were able to understand the subject; they genuinely appreciate having learned something.

Another thing jurors appreciate is someone who does not talk down to them or patronize them. People always want to know about courtroom tricks; what successful litigators know is that there are no “tricks.” There is just careful preparation. That includes assuming the people on the jury will understand a technical explanation that is clearly expressed, and then mapping out an easily-understandable presentation. It also means retaining an expert witness who not only understands the field, but can communicate that understanding by neither talking over juror’s heads nor talking down to them. Most lawyers who complain that “jurors are too stupid to get it” are merely trying to deflect attention from their own laziness.

Doc Offit’s football analogy misses the mark. In a courtroom, we don’t bring in 12 people who know nothing and expect them to make a decision without guidance. The situation is more akin to watching the replay with able commentators telling us why the ruling on the field should be upheld or overturned.

Jurors have a judge to guide them in applicable legal principles, and expert witnesses are used to guide them in technical areas. In admitting expert testimony, courts are guided by what has come to be known as the Daubert rule to keep “junk science” out of the courtroom, a process which involves the expert showing that his opinion was derived in a scientifically acceptable manner before the jury ever sees the witness.

That is not to say that miscarriages of justice do not occur, but they are not as common as many people seem to think, and those ridiculous jury verdicts the press loves to report are more often than not reversed by the trial court or the court of appeal. In general, however, referring disputes to the common wisdom of 12 (or sometimes six) disinterested (which is not the same as “uninterested”) individuals works quite well.

The whole idea of the jury system is to bring in people from a broad cross-section of our society, and choose a group of 12 who can take a fresh look at a dispute. Over 20 years of practice has left me jaded and cynical about many aspects of the American legal system, but not about the role of the jury in that system. That’s because those 12 people are rarely jaded and cynical when they step into the courtroom and take their seats in the jury box. Most are eager to serve and do their best to learn about why a dispute exists, and what can be done to resolve the dispute. In short, jurors listen. A special master, a magistrate, or even the finest judge, on the other hand, is far more likely to have formed a definite opinion before formal evidence is presented. The more specialized the tribunal, the more likely the fact finder is to have formed a premature opinion.

And that brings us to “Vaccine Court.” Vaccine Court operates as part of the United States Court of Claims, which ordinarily handles claims arising out of government actions. Before a claim can be brought against a vaccine manufacturer in a state or federal district court, the plaintiff must first file his/her claim in Vaccine Court.

The selling point for the creation of Vaccine Court was that it would handle the claims more quickly than most courts. Of course, “quickly” can be a relative term. And “quickly” is not always the right thing. The “Master Autism Petition” in Vaccine Court is now in a bit of a holding pattern, which will hopefully allow the science of the controversy to get a little more settled. A more-settled science in this case should make true justice more possible, at least in theory. But justice always becomes problematic when you put it into the hands of an elite group.

Almost every commercial endeavor one can undertake in this world carries with it the risk that one may be sued for a bad outcome. It is simply part of the cost of doing business. Sometimes, groups with very good lobbyists get a little extra protection. For example, here in Louisiana (generally considered a plaintiff-friendly state) before a patient can sue his/her doctor for medical malpractice, the claimant must first file a claim with a state agency. That claim is heard by a panel of three physicians, with an attorney guiding them. Even if the panel determines that there was no malpractice, the plaintiff can still file an ordinary suit. Plaintiff lawyers refer to the panel as a “speed bump.”

Vaccine Court is also a speed bump. If that body determines there is a valid claim, an award is made. If the plaintiff is dissatisfied, an ordinary suit can be filed. That is, a suit can be filed if the plaintiffs and their attorney still have the money and fortitude to fight a defendant who, to that point, has not incurred one penny of cost in the fight.

That’s right. In Vaccine Court, the plaintiff is technically suing the government, so government lawyers vigorously defend the claim at taxpayer expense. And where does the money come from if the Vaccine Court makes an award? It comes from a fund that was created by per-dose taxes on vaccines, a cost that was passed on to the patients who received the shots.

In his editorial, Dr. Offit doesn’t directly describe all the current legislative moves by which the industry with the sweetest immunity deal ever seeks to throw a little more honey into their jar. He simply mentions that it makes sense to have flu shots included “in advance of the next pandemic.” But the tone of his writing makes it clear that, like some others, Paul Offit would be very happy to see Vaccine Court become the only avenue of available “justice.”

Paul Offit is ready to discard over 700 years of legal tradition because he thinks only doctors are intelligent enough to understand science. His arrogance is breathtaking.

WISE WORDS FROM A NINE-YEAR OLD

Today, Ginger at Adventures in Autism presents an amazing essay by a nine-year old boy with autism. In it, he tries to explain what it's like to be autistic. It should be required reading for every educator in this country.

AGGRESSIVELY SEEKING PARTNERSHIPS

An item posted on the site of the St. Petersburg Times has an all-too-familiar ring to the average parent of a child on the autism spectrum:

When her daughter Sydney was 3, Kathy Swenson enrolled her in prekindergarten at a Hillsborough County school. But Sydney wasn’t getting the services that Swenson thought were crucial to her development.

“I wasted three years of Sydney’s life,” she said as she stood in front of more than 40 people, including two state representatives and Hillsborough’s new school superintendent. “We want a partnership, not a pity party.”

Ms. Swenson, tired of trying to fight for what her child is entitled to under the Individuals with Disabilities Education Act (“IDEA”), wound up starting a new school to specifically address the needs of children like Sydney. But to make it work, she’s looking to the local school system for funding:

“Instead of fighting me, embrace me, because I can take you where you need to go in one year instead of five,” she said.

Like many parents, Kathy Swenson has learned far more about how to deal with autism than most of the so-called experts. And her cry is the same one many of us shout out. The schools are required to give our children the same opportunity to be educated in the least-restrictive environment that is reasonably possible. “Let us help you,” we say to the schools, “use your resources wisely to accomplish that task in the most efficient and effective way possible.”

In Hillsborough County, the new school superintendent said all the things we’re used to hearing. She said that the system does not have enough certified teachers because those teachers can earn more money in schools elsewhere. It’s always about the money, isn’t it? But that superintendent was at the meeting and actually listened to what the parents were saying, and she offered some hope in that they were looking at other systems across the nation to see what was being done to attract and retain teachers. Moreover, the superintendent vowed to talk over the parents’ concerns with her staff, and she made a frank admission:

“There are some situations you have told me about today that should not have occurred,” she said. “We have a lot to learn.”

With that attitude, they may be on the right path in Hillsborough County, but the superintendent needs to understand that it will take more than keeping teachers. Those teachers need to work with the parents to determine and meet the individual needs of each autistic child, for they are all individuals with unique strengths and weaknesses.

My wife and I hope that we are on the right track in St. Tammany Parish, Louisiana. Like many parents of autistic children, we tried to work through the usual process of evaluations and I.E.P. meetings. But despite being in a school with a principal who is willing to “think outside the box,” and who believes in integrating “special” students into the general student body, we still weren’t able to get our son what he needed at school. Without going into too much detail, we felt like last year was wasted.

So far this year, even with the chaos caused by Hurricane Katrina, we are off to a far better start. Before the start of the school year, we sent correspondence to the superintendent of our system that made it clear that we were not satisfied with the status quo, and we laid out specifically what we expected the school to do for our son this year. That led to a meeting between the superintendent and my wife, Sym, who brought along our friend, Sheila Ealey, who was at that time in the process of starting a new school program for ASD kids in the New Orleans area (a project that literally drowned in the post-Katrina flooding less than two weeks later). A little bit into the conversation, the superintendent decided that a new meeting was required: one with her special education team present.

A couple of weeks ago, we finally had that hurricane-delayed meeting. True to her word, the superintendent brought in the head of special education, the system’s top speech therapist, the head of occupational therapy, and a couple of other staff members who needed to be in the loop. They listened as we (well, to be honest, Sym did most of the talking) explained how the system must move beyond using cookie-cutter solutions because each autistic child falls somewhere different on the spectrum. We made clear what our son needed, and they gave us an idea as to how they would try to meet those needs.

Everything has not turned completely around instantaneously. We are still struggling to get some of the school therapists to understand what works with our son. But slowly they are starting to realize that although our expertise may not match theirs in their respective fields, we are the experts when it comes to our son. Things may not be perfect, but we’re finally moving in the right direction.

Would all this have come about if we had not made it clear that we would do whatever was necessary to get our son everything he was entitled to under IDEA? I don’t know. But I believe our school system is acting in good faith, and I hope that we are helping them realize that there may be different ways of serving the autistic community. I hope that the progress they see our so make will change the way they approach educating all autistic children. And it all begins with allowing parents to be partners.