Another Resignation at Autism Speaks

From Dr. Eric London.

Dr. Eric London has announced his resignation from the Autism Speaks Scientific Affairs Committee. London is the Director of the Autism Treatment Laboratory at the New York State Insitute for Basic Research in Developmental Disabilities. He is also Director of the New York State Autism Consortium and a member of the Autism Science Foundation's Scientific Advisory Board. He is the co-founder of the National Alliance for Autism Research (NAAR).

Dr. London's letter of resignation is below:

After three years of great hopes for Autism Speaks being the optimal vehicle to advance autism science and treatment, I regretfully and sadly must announce my dissociation from this organization, including resignation from the Scientific Affairs Committee.

Despite the very excellent work that Autism Speaks has done in the area of awareness and legal advocacy, there are many differences which I have with the organization, mostly concerning the direction and prioritization of the science program. There have been numerous decisions made which I believe have adversely impacted autism research and none of those decisions were made upon the advice of the Scientific Affairs Committee. The processes with which science decisions have been made have been contrary to my hopes and expectations when the NAAR-AS merger was effectuated.

If this were the only issue, I might have continued to try to work from within the organization to influence science policy and direction. However, the pivotal issue compelling my decision is the position which Autism Speaks is taking concerning vaccinations. The arguments which Dr. Dawson and others assert—that the parents need even further assurances and there might be rare cases of "biologically plausible" vaccine involvement—are misleading and disingenuous. Through its website and other communications, Autism Speaks has been influential and contributory in encouraging parents' doubts. By preferentially investing and advocating for the use of limited financial resources on the "biological plausibility" argument, the organization is adversely impacting the advancement of autism research.

Recent reports have documented significant outbreaks of measles and other infectious diseases which could have been controlled and even eradicated. The lowering of the vaccination rate has already led to deaths. If Autism Speaks' misguided stance continues, there will be more deaths and potentially the loss of herd immunity which would result in serious outbreaks of otherwise preventable disease. I further fear that if and when herd immunity is lost, there may be a societal backlash against the autism community.

In my role as an Autism Speaks Scientific Affairs Committee member, I would be lending credibility to an organization whose scientific agenda and positions I can no longer ethically support. Please accept my resignation, effective immediately. If anyone would like to discuss this with me further, please do not hesitate to contact me.

Sincerely,
Eric London, MD

Rethinking Autism in Vanity Fair

Vanity Fair has a short article about a new website, Rethinking Autism, which can briefly be described as a satirical pro-neurodiversity site featuring sexy videos that mock celebrity endorsements related to autism. These clever videos are a perfectly targeted and totally hilarious send-up of a certain former Playboy bunny's autism profiteering, and they had me rolling on the floor laughing. I've reposted one of them below. Jenny, you've met your match this time.

Poof! The Vaccine Lawsuit

My graveyard now has a new resident—the vaccine lawsuit, along with the profiteering quacks who spawned it:





For the occasion, I've composed a new version of "Puff, the Magic Dragon" by Peter, Paul & Mary. Enjoy.


[Chorus:]
Poof! The vaccine lawsuit
Lacked all sanity
Deluded schemers dreamed of loot
In the land of fantasy.

Without a shred of science
The rascals spewed out guff
Tied up with strings and sealing wax
And other fancy stuff.

[Chorus]

Together they would travel
In search of easy marks
To conferences and parent groups
Just like so many sharks.

Autism societies
Would bow to their brash claims
Publishers would print their trash
When the editors saw their names.

[Chorus]

Some urban legends live forever
But not so greedy quacks
Whose marketing plan was nothing but
Junk science and nasty attacks.

One fine day it happened
The court knew that they lied
And Poof! The vaccine lawsuit
Shriveled up and died.

With no more easy targets
To cheat and abuse
The quacks no longer could invent
False epidemic news.

Now known for what they were
Their lies could not shock
So all those slimy quacks just
Crawled back under their rock.

[Chorus]

Kristina Chew on John McCain's Autism Policy

…or, as the case may be, on his lack thereof.

As many of us noticed, McCain went out of his way to kiss up to the antivax crowd during the third presidential debate, in addition to his usual assortment of wingnuts and conspiracy theorists. Although McCain gave the distinct impression that he doesn't even know the difference between autism and Down syndrome, his ignorance didn't stop him from declaring that federal spending was needed to find the cause of autism—that is, when he wasn't promising an across-the-board spending freeze. (Obama was quick to point out that very obvious contradiction. You go, Barack! And here's a teensy hint, John—just about everyone whose fashion choices don't include a tinfoil beanie has figured out by now that autism is caused by genes, not vaccines.)

McCain's clumsy attempt at pandering failed to appeal to many parents of autistic children, as reporter Claudia Kalb mentioned in a Newsweek web exclusive interview with Kristina Chew of Autism Vox, who noted that McCain's comments "seem to betray a lack of knowledge or understanding about the kinds of things that autistic children need… He's sentimentalizing the children, but not looking at how we can help them, how we can teach them, how we can make things better." Another topic discussed in the interview was the tendency of politicians and others to overlook the needs and concerns of adults with disabilities.

That observation was certainly accurate. John McCain has overlooked people with disabilities so thoroughly in the course of his presidential bid that—with only two weeks to go before the general election—his own campaign admits that he hasn't even bothered to prepare a disability policy statement. That says far more about his attitude toward American citizens with disabilities than any platitudes spoken in a debate ever could.

Clifford Shoemaker Sanctioned for Unwarranted and Unseemly Conduct

Here's a bit of advice for anyone who may be foolishly considering abuse of the legal process to harass a blogger: Don't mess with a librarian.

Virginia attorney Clifford Shoemaker, who attained instant infamy in the blogosphere two months ago when he issued a ridiculously irrelevant subpoena to neurodiversity blogger Kathleen Seidel in an attempt to intimidate her after she wrote about his vaccine litigation profiteering, has been sanctioned by the United States District Court for the District of New Hampshire. After the court quashed the subpoena in response to a well-crafted pro se motion, the court decided that sanctions were appropriate for Shoemaker's violations of Fed. R. Civ. P. 11(b)(1) and Rule 45(c)(1) in serving "a grossly overly broad subpoena intended to harass."

The court gave short shrift to Shoemaker's rambling argument that the amount of information set forth in the blog entries was suspicious, observing that "Shoemaker has not offered a shred of evidence to support his speculations. He has, he says, had his suspicions aroused because she has so much information. Clearly he is unfamiliar with the extent of the information which a highly-competent librarian like Ms. Seidel can, and did, accumulate."

The court further stated that Shoemaker's "efforts to vilify and demean Ms. Seidel are unwarranted and unseemly" and that "Clifford J. Shoemaker’s action is an abuse of legal process, a waste of judicial resources and an unnecessary waste of the time and expense to the purported deponent."

Unfortunately, the court did not see fit to order Shoemaker to compensate Ms. Seidel for his waste of her time and expense. The court merely ordered him to attend a continuing legal education program on ethics and on the discovery rules in the Federal Rules of Civil Procedure. The court did, however, direct its clerk "to forward a certified copy of this order, the motion to quash, the show cause order, and the response of Shoemaker and Seidel to the appropriate professional conduct committee of the Virginia State Bar in order that it may be made aware of Clifford J. Shoemaker’s conduct and so that those authorities may take whatever action they deem appropriate."

Perhaps there may be more sanctions in Shoemaker's future?

The Autism Recovery Hoax

I've seen a number of testimonials floating around on the Web from parents who declare that after a few years of X biomedical program or Y behavioral therapy, their child has now "recovered" and has been evaluated by reputable psychologists and found to have "no trace of autism."

Many of these parents appear to be sincere, unlike the hucksters who tout their endorsements. However, their claims reflect a basic misconception of how an autism diagnosis is made. Quite simply put, it is not possible under the DSM-IV criteria to have a "trace" of autism. The diagnosis requires a showing of significant impairment in certain identified social and communicative behaviors. Therefore, if a child or adult has autistic characteristics but does not have (in a clinical psychologist's subjective judgment) any significant problems associated with those characteristics, the psychologist will conclude that he or she is not autistic.

Indeed, because many autistic adults have become familiar enough with society's narrow behavioral expectations to be able to blend in (at least superficially) with the majority population, it is often extremely difficult for a psychologist to diagnose an autistic adult. Some psychologists will not even attempt to diagnose an adult unless he or she comes to the evaluation accompanied by a parent or another older relative who can accurately describe his or her childhood development.

The flaws in this diagnostic approach are pretty obvious. It's basically the equivalent of identifying a young girl as female based on evidence of significant female behaviors such as playing with Barbie dolls, and then declaring her to be miraculously recovered from her gender when she outgrows the Barbies.

Yes, there are many parents of so-called recovered children who have in fact seen significant changes in their children's behavior over a few years. To a large extent, these changes are attributable to the natural process of maturation. Just as girls outgrow playing with Barbies, autistic children outgrow behaviors like jumping on the couch and climbing on the furniture. Children also develop better language skills over time.

Some changes also may be related to psychological factors in the family. That is, if the parents react to the autism diagnosis with shock and despair, the child is likely to become very anxious as a result of observing the parents' distress and probably will have more behavioral issues because of that anxiety. If the parents then become convinced that they have found a wonder cure and that everything will be just fine, the overall level of anxiety in the household will decrease greatly, and the child's behavior will improve just because he or she is no longer feeling as stressed.

On occasion, alternative diets do have beneficial effects. Gluten intolerance and lactose intolerance are both fairly common in the general population. If an autistic child who happens to have one of these conditions is put on the popular GFCF diet, the child's digestion will improve, and he or she probably will behave better as a result of feeling better. This doesn't mean that the child is no longer on the autistic spectrum, however; it simply means that he or she is a healthy and happy autistic child.

A biomed enthusiast or behaviorism supporter may ask, perhaps, whether it really makes any difference if a child is described as "recovered" or as an autistic child who has developed a socially accepted set of behaviors. In either case, they may say, aren't we talking about the same positive outcome? Does it really matter what language is used?

The difference is, of course, that using the word "recovery" implies that autism is a disease. This in turn implies that autistic people are damaged, that the autistic way of being is inherently flawed, that it is not possible to be both healthy and autistic, and that (as Autism Speaks would have it) the entire autistic population ought to be eradicated.

There's also a subtler set of implications. When social conformity is equated with neurological health, the objective of "recovery" then becomes conformity for its own sake; just looking normal (whatever that may mean), rather than developing truly useful life strategies, is the ultimate goal. Instead of valuing diversity and helping every child to find a niche based on individual strengths and interests, we end up crushing an ever-widening array of human differences as our society lurches toward Camazotz. Becoming socially accepted, regardless of what is lost in the process, should not be assumed to be a positive outcome.

And then, of course, there's the implication that the hucksters want to create when they speak of "recovered" children: that autism is a tragic disease, and therefore if you are a loving parent, you'll gladly go into debt to pay for the latest and greatest miracle cure. If they honestly acknowledged the simple fact that autistic children mature over time, they wouldn't be able to stampede so many parents into buying unproven and possibly dangerous products and services.

Parents—don't be fooled by this hoax!

Clifford J. Shoemaker and Lisa Sykes: Putrid Lawyering

Before today, I hadn't written any blog posts that mentioned, even in passing, Shoemaker or Sykes or their dubious doings in the arena of vaccine litigation and autism profiteering. Nonetheless, it looks as if they've decided that I am part of the vast conspiracy whereby Big Pharma, the government, the Illuminati, little green space aliens with tentacles, etc., cruelly inflicted upon society a tsunami of little children who might otherwise have died from vaccine-preventable diseases, or something of the sort.

Kathleen Seidel reported yesterday that Shoemaker issued a subpoena to her in the case of Sykes v. Bayer—as to which she has no connection whatsoever, beyond her investigative reporting—demanding that she hand over all her correspondence with more than a hundred bloggers, including yours truly. Gee, I suppose we ought to feel flattered that our posts about diversity and civil rights are striking such terror into the craven little hearts of the snake oil brigade. The next thing you know, they'll be wanting us to appear personally in court to prove that we don't have green tentacles. (Note to self: after returning from secret meeting aboard flying saucer, inspect blog sidebar picture carefully to make sure all tentacles have been completely edited out.)

Not satisfied to stop there, his slime-o-matic subpoena also demands Kathleen's bank statements, tax returns, and "communication with any religious groups (Muslim or otherwise), or individuals with religious affiliations…"

Charming little bit of innuendo, wouldn't you say? I guess it's meant to suggest that the Evil Neurodiverse (tm) are now part of a Muslim-pharma-Illuminati-government-extraterrestrial conspiracy. Just call me ABFH Hussein.

Oh, and if you order right now, you'll also get Shoemaker's amazing miracle cleaver, which slices and dices the truth, shreds any semblance of dignity and decency, chops logic six ways from Sunday, and minces the duty of an officer of the court. Free tinfoil beanies to the first 100 customers!

I expect the judge finds this garbage a lot less amusing than I do. I also expect, though, that when Shoemaker gets his conniving ass sanctioned for conduct unbecoming a bottom-feeder, he'll just whine that the judge must be part of the conspiracy too.

Update, April 21: Kathleen's motion to quash the subpoena has been granted, and Shoemaker has been ordered to show cause why he should not be sanctioned.

Update, May 18: Shoemaker's tinfoil beanie tantrum gets even more clownishly ridiculous in the response to the order to show cause.

Update, June 24: Shoemaker has been sanctioned for his "unwarranted and unseemly" conduct in issuing the subpoena.

Autism Causation Mad Libs

After reading Bev's Aspie blog post generator, I was inspired to create the following Mad Libs story for your enjoyment. When I was a kid, I was a big fan of Mad Libs, which (for those who haven't seen them) are stories that contain blank spaces. One person reads the story to another; the listener, who hasn't seen the story, provides words at random to fill in the blanks when asked for verbs, nouns, etc. The results are often quite funny.

If you're in the mood for some merriment, feel free to print out this post and share it with a friend!


AUTISM CAUSATION


Autism is a ___________ (adjective) ___________ (noun) that involves ___________ (adjective) behavior. It may be caused by ___________ (noun), or perhaps by a combination of ___________ (adjective) ___________ (noun), ___________ (plural noun), and ___________ (adjective) ___________ (noun).

Because people in positions of authority have described autism as ___________ (adjective), some parents have become convinced that they need to ___________ (verb) their autistic children ___________ (adverb) by means of ___________ (noun). They may take their children to visit ___________ (plural noun) for therapies such as ___________ (adjective) ___________ (noun) or buy dietary supplements consisting of ___________ (plural noun) and perhaps also some ___________ (adjective) ___________ (plural noun).

This has been claimed to result in autistic children becoming ___________ (plural noun) who are indistinguishable from ___________ (adjective) ___________ (plural noun).


Grab a pencil and have fun! And remember, no matter how silly the answers end up being, they're probably going to make more sense than most of the autism causation and treatment claims out there.

Boycott Discover's Ignorant Ass

The lead article in the April 2007 issue of Discover Magazine is a truly godawful endorsement of autism quackery. I'm not writing a full review of it, as Interverbal already has provided a thorough critique, but here's a brief summary of why it stinks like a five-week-old dead fish:

The article begins with the tired old clichés of a suicidal autism mother and a cancer analogy. Then it claims that autism "can, in some and perhaps many cases, be successfully treated" and goes on to sing the praises of DAN! and the quack parade of Martha Herbert, Jill James and Amy Yasko. The author describes autism as a disorder caused by toxic exposure and says about one family's use of biomedical treatments, "Mercury chelation, in this particular child's case, was a near panacea." (Needless to say, the article never mentions that children have died from chelation or that it is widely used by quack alternative practitioners as a cure-all for everything from cancer to heart disease.) Verbiage such as "devastating derangements of autism," "trapped in a body that doesn't work," and "a mysteriously shuttered brain and body" appears prominently throughout the article.

Apparently the views of the author, Jill Neimark, regarding people with disabilities have not changed much since she interviewed Peter Singer several years ago and wrote that "he defends his points with powerful arguments."

Why boycott Discover for printing this article, you might ask, when ignorant garbage about autism shows up in the media all the time? Well, the short answer is that Discover is a geek magazine. Not just a magazine for sorta kinda semi-geeks, but a publication that has been read and enjoyed (until now) by large numbers of technology-loving, math-puzzle-solving, origins-of-the-universe-pondering AUTISTIC geeks.

To put it another way, Discover's dumbass management just took a big ugly chomp out of the hand that feeds them. And we can and should make them pay for it. Discover is one of the few products where the number of autistic buyers is significant enough so that we can wield some noticeable economic clout. What's more, it is a totally frivolous item that nobody really needs to buy, so there is no hardship involved in going without it.

Here are the addresses where we can write to Discover's editors and explain why we have no intention of renewing our subscriptions (or, for those who are occasional readers of the magazine, why we won't buy any more copies from the newsstands).


editorial@discover.com

90 Fifth Avenue, New York, NY 10011


Let's kick some quack-loving bigot ass.

David Kirby: Truce, My Ass

Thanks to Joseph for this post's title, which refers to David Kirby's article claiming to seek a truce with neurodiversity activists. This is what I have to say about that:

You really don't get it, Kirby, do you? This is not an academic debate for any of us on the neurodiversity side. It's a real-life war. Unlike you, Kirby, we don't have the option of just walking away and going back to our previous lives. Those lives no longer exist. All the bigoted stereotypes that you and your cronies splashed all over the international media made sure of that. Now we're a despised minority race of second-class citizens struggling with prejudice and discrimination, our civil rights in jeopardy at every turn. Governments and private organizations are funding prenatal screening research to identify and abort autistic children. We're on the brink of eugenic extermination worldwide.

Those of us who are autistic face the prospect of spending the rest of our lives in the grim limbo to which those with Down Syndrome already have been consigned—existing only as isolated survivors of a routine eradication scheme, regarded by society as blunders of nature who never should have seen the light of day. Likewise, neurodiversity activists who are parents understand that if society's intolerant attitudes do not change, their children soon will have to face that nightmare scenario. What parents would want such a horrific future for their children?

To make myself completely clear, Kirby, the reason you're our enemy is because of your disgusting display of bigotry toward autistic people, not because of your opinions (however ignorant) on the thimerosal hypothesis or "biomedical" approaches in general. As Kevin Leitch recently pointed out, neurodiversity is a broad-based philosophy of respect and social acceptance for all people, regardless of their neurological configuration. It doesn't require its adherents to hold identical opinions about the causes of autism, the merits of alternative medicine, or dietary choices. Many of us take dietary supplements to improve our health. Like anyone else, autistic people can benefit from a healthy diet and regular exercise. Some of us find meditation or other "alternative" methods of reducing stress to be helpful.

We have no quarrel with caring and respectful parents who reasonably believe that a particular alternative diet or treatment is helpful for their child, and we have no animosity toward people who want to discuss potential causes of autism rationally and politely.

But when it comes to the greedy quacks who knowingly endanger autistic children with bogus medical treatments and frighten parents with a nasty barrage of false horror stories; to the self-proclaimed charitable autism advocates who envision a world eugenically cleansed of autistic people; and to the publicity-scrounging media vultures who deliberately fan the flames of bigotry, knowing full well how much damage they are doing, for their own personal gain —

No quarter.

Number Needed to Treat

The title of this post refers to a way of measuring the effectiveness of pharmaceutical drugs and other medical treatments. The concept of Number Needed to Treat (NNT) was developed by epidemiologists to help consumers make more informed decisions about medical care by advising them, not of relative risks, but of the number of people who must get a treatment for a single person to benefit.

Here's an illustration of how the NNT concept works: Let's suppose somebody invents a new drug to prevent teenagers from becoming obsessed with gangsta rap. The manufacturer advertises that teenagers who are treated promptly with the drug when their parents first catch them listening to gangsta rap are 50 percent less likely to develop GROD (Gangsta Rap Obsessive Disorder). Sounds pretty good, doesn't it? Parents who value their hearing, their sanity, and household peace should all rush their teenagers to the doctor, right?

Well, no. Not exactly.

In this hypothetical scenario, what the manufacturer hasn't mentioned in the advertisement is that, out of 100 teenagers who listen to gangsta rap, only 4 of them become obsessed with it. Taking the new wonder-drug reduces that number to 2, making a gangsta rap obsession "50 percent less likely." As you can see, that statistic would seriously mislead parents because it was never very likely that any particular teen would become obsessed with gangsta rap. Because 100 teenagers had to be given the drug to prevent 2 instances of GROD, we would calculate the NNT for this particular drug as 50, meaning that the drug had to be administered to 50 people in order to benefit one.

You can find a more detailed explanation of the NNT concept in a recent article on the Slate website.

What does all of this have to do with autism? Well, we often see claims by biomed proponents that a particular treatment, supplement, or what-have-you is 50 percent effective at "rescuing" children from a lifetime of being trapped in their autism and unable to communicate. Leaving aside the awkward fact that not a single one of these claims has ever been supported by legitimate peer-reviewed studies, let's just wander back into the Land of Unlikely Hypotheticals for the moment and imagine that someone actually did perform a valid study confirming such a claim. What would it mean for parents who had just been told that their young child was on the autistic spectrum?

As I mentioned in a recent post, research has shown that approximately 90 percent of children on the autistic spectrum develop speech by age nine. (C. Lord et al, "Trajectory of language development in autistic spectrum disorders," in Developmental Language Disorders: From Phenotypes to Etiologies, 2004.)

Several older studies were discussed (thanks, Joseph and David) in the comments to that post, indicating that the percentage of Kanner autistics who developed speech by adulthood was between 30 percent and 50 percent. Not all autistics who lack functional speech as children are in the Kanner category, but many are. And we know that in past years, such children often were institutionalized at a young age, with no speech therapy and no reasonable opportunity to learn speech. According to the National Autistic Society, the ratio of Kanner autistics to the entire autistic spectrum is about 5:91 (this is based on studies conducted in the UK). So I think it's reasonable to estimate that at least 3 percent of today's autistic spectrum children will learn to speak after the age of nine.

There are also autistics who rely on alternative methods of communication. Facilitated speech has gotten a significant amount of media attention, but there are many methods. Unfortunately, some non-speaking autistics who could benefit from augmentative communication devices have been unable to get the devices as a result of being "written off" by ignorant people who assume that they are incapable of learning. As more advanced technology becomes widely available and society's attitudes toward autistic people improve, I expect that more autistics will be able to benefit from these devices. At present, however, I do not believe there are any accurate statistics on how many non-speaking autistics can learn to communicate by alternative means. Considering how often we see the topic mentioned on the Internet and elsewhere, though, we're probably talking about another 3 percent of the total autistic population (that's a conservative estimate).

Now let's add these percentages together. If 90 percent of all autistics learn to speak before age nine, and 3 percent begin speaking at a later age, and 3 percent do not speak but can communicate by other methods, what this means is that 96 percent of all autistic adults can communicate. Just as in my NNT illustration of teenagers and gangsta rap, only 4 percent of the children who would be receiving the hypothetical scientifically-proven biomed treatment would fall into the non-communicative category from which it was intended to "rescue" them, and only 2 percent actually would be "rescued." Once again, the NNT for this treatment would be 50, if such a treatment existed.

To put it another way, even if there really were a biomed treatment that had valid research studies supporting a claim that it could effectively "rescue" half of the autistic children who would otherwise spend their lives being unable to communicate, for every child who was "rescued" with this treatment, another 49 children would be dosed unnecessarily with drugs that could endanger their health. Those wouldn't be good odds even if there were legitimate scientific backing for the biomed peddlers' claims. Given the fact that no such proof exists—it's just lunacy to put children at risk like that.

Child Abuse Accusations: Enough

I'll admit that I have been known to write long, sarcastic rants bitching people out (sometimes unfairly) if I think they're jerks. Still, there are some very basic lines that I won't cross. Making accusations of child abuse to score points in a debate is one of them.

There has been quite a lot of this from both sides of the biomed debate recently, and it needs to stop. This sort of behavior intimidates decent parents who may not even be involved in the biomed debate but just want to blog about their family's life with an autistic child. They're very likely to have second thoughts about starting (or continuing) a blog when they see threats to report parents for abuse because they use biomed products, or threats to report parents for neglect because they are not using any therapies, or wild accusations that all the parents on one side or the other are beating their kids.

And we need more parent blogs, whether or not they agree with everything we have to say. We need more people writing about the real-life experiences of raising autistic children so that society can see many points of view, not just the grossly distorted propaganda of Autism Speaks and other slimeballs who use images of hopelessness and of child murder as a deliberate tactical ploy to manipulate parents' emotions and exploit them financially.

What's more, I really hope that the child abuse accusations are just idle rants and that no one has been following through on threats to call child protective agencies. You know what happens when an autistic child gets put in foster care while suspicions of abuse or neglect are investigated? Marcus Fiesel happens. Routine drugging to make a child docile happens. About 85 percent of children in foster care in the United States are on some sort of psychiatric drug, sometimes multiple drugs (and by the way, this has nothing to do with the recent increase in the number of children identified as autistic; it's been like that for decades). Physical and sexual abuse by other foster children with serious emotional problems can happen, even when the foster parents are decent and responsible. A news article that I read in the wake of the Marcus Fiesel murder cited a research study showing that children who have been in foster care have a higher rate of post-traumatic stress disorder than combat veterans.

I don't care how much you hate a certain parent's opinions, think he's a total asshole, or believe that his kid would be better off with almost anyone but him. Unless you know that his kid is in actual danger (and you don't, because all you've seen is a lot of Internet hot air, which tells you almost nothing about how he treats his kid in real life) you have no business making a child abuse report that could result in the kid being unnecessarily placed in foster care. Nobody has the right to put an innocent child at risk because of a personal vendetta against the parent. Not ever.

But You Use Therapies

One of the Autism Hub bloggers, Soapbox Mom, wrote about an argument she got into on a biomed parents' forum. After she posted about acceptance, some of the parents on the forum called her a hypocrite because she took her son to speech therapy. If she could love and accept her autistic child while using this therapy to improve his speech, they argued, then how could she criticize parents who were using biomed treatments with the hope that their kids' speech would improve? After all, they were trying to change their autistic kids in the same way, weren't they?

Soapbox Mom got frustrated because she couldn't think of a good, quick answer to that argument. And to be frank, there isn't one. Acceptance is about love, understanding, and positive attitudes, not about the use or avoidance of particular therapies or diets or supplements or drugs. There is no list of Good Therapies with a Neurodiversity Seal of Approval. It all depends on the reasons for making the decision.

Like anything else, it is possible to choose speech therapy for the wrong reasons. Most parents who take a child to speech therapy want to help the child to communicate more effectively and to feel less frustrated. Certainly that is a good thing, but there are some scenarios where it might not be a respectful and accepting choice.

What if a minimally verbal autistic teen has been in speech therapy for many years, has made very little progress in learning to speak, finds the therapy pointless and depressing, and is much happier communicating in sign language or with a keyboard?

Or what if a child has no trouble speaking clearly enough to be understood, but the parents insist on speech therapy anyway because they are embarrassed about having an autistic child and want to get rid of all traces of his natural monotone voice and make him indistinguishable from his peers?

In the Deaf community, speech therapy is a hugely controversial issue. For many years, hearing parents were advised to teach their children to speak as clearly as possible, rather than teaching sign language. The goal was to help their children fit into mainstream society. Deaf activists contended that this choice showed a lack of respect and acceptance.

Can a parent who uses biomed treatments be a loving and accepting parent? I believe that this also depends on the family's particular circumstances and the reasons for that choice. There is a subculture of alternative medicine enthusiasts who take dietary supplements with every meal, chelate themselves periodically, and undergo other detoxification regimens to cleanse themselves of the pollution in the modern environment. If an autistic child happens to be born into such a family, he's going to get all sorts of biomed treatments, but that doesn't necessarily mean that his parents hate his autism, are cruel or uncaring, or lack respect for him. To the contrary, some of these families are crystal-gazing New Agers who brag about what a wonderfully spiritual and enlightened Indigo Child they have. If their child weren't autistic, they would still give him a gazillion supplements with every meal and treat every skinned knee with alternative therapies. That's just part of their culture.

Another point to consider is that many of the biomed parents are autistic themselves (heredity being what it is) or have significant autistic traits. So when they respond to arguments for acceptance by yammering on about the biomed wonder of the week, maybe that's just a perseveration speaking, rather than a rejection of the idea of acceptance. Such parents may be misguided, but they're not necessarily our enemies, and we should not assume (as to those who haven't said anything hateful) that they don't care about their children's feelings.

To be clear, I am not in any way suggesting that those who peddle bogus treatments should be given the benefit of the doubt. Quacks who prey on vulnerable parents by spewing horror stories about autism are liars, thieves, cheats, frauds, and total scum, and they deserve to be kicked around without mercy. But they are most effectively targeted by pointing out their lack of professional qualifications and their lack of sound science—not by questioning the motives of the parents who have been taken in by their slick schemes. We don't always know the parents' motives. (Unlike the quacks, whose motives are greed, greed, and more greed.) Ultimately, the best way to end autism quackery is to demonstrate that the horror stories are false and that there are large numbers of happy and thriving autistic children and adults.

Praising ALA, Continued

Warning, rampant potty humor and troll-baiting ahead.


I often blog about crap in the figurative sense of the word, but this post is about the real kind. You know, the stuff you flush every morning, unless you're constipated. For those unfortunate sufferers, there's a recently developed yogurt product that contains a new kind of bacterial culture intended to make people more regular.

Well, you guessed it. I ate some of that yogurt. I don't know what the hell I was thinking. As if it's not bad enough that half the foods on America's supermarket shelves are made with high fructose corn syrup from genetically engineered plants, now I've got some weird new kind of bacteria running amuck in my gut. Did it make me more regular? Yeah, sorta. But ever since May, I've been shitting heaps of little round turds that look like rabbit pellets. I wonder if the yogurt makers put bunny DNA in the bacteria. I'm keeping a close watch to make sure I don't sprout whiskers or a fluffy white tail (and if I do, my faithful readers will be the first to know). Let this sad tale be a lesson to anyone who sees nothing wrong with putting strange new organisms in the world's food supply.

While I was trying to figure out what to do about it, I flipped through a book of nutritional advice and noticed that its recommended remedy for rabbit-pelletized doo-doo was milk thistle supplements and alpha lipoic acid (ALA). Naturally that made me think of a certain troll who worships at the altar of ALA. When we last visited the fascinating adventures of Deacon JBjr, he was passing the collection plate at the Curebie Church of Everlasting Conformity and exhorting the worshippers to bow before ALA's holiness.

Just out of curiosity as to whether the stuff had any worthwhile uses at all, I went to the health food store and bought a thirty-day supply of milk thistle and ALA, which I have been taking for the past month. Being a fair-minded person, if I had experienced any miraculous effects from ALA, I'd have given the Deacon a more impressive title. He could have become the Lord of the Loo, the Director of Dung, the Cardinal of Crap, or the Mullah of Manure. I would've tooted joyfully unto ALA while worshipping on the porcelain pew. The Curebie Church would have had its very own rapper on the crapper, singing an ode on the commode.

But sadly, ALA had no apparent effects. I'm still crapping little pebbles that look like they came from the bottom of a riverbed. This gives rise to two plausible alternative hypotheses: either those newfangled bacteria are super-tough little buggers, or ALA is, well, crap. I'm inclined to believe that ALA, although it may be loo-crative for those who sell it, is flushworthy. Sorry to be a party pooper, John.

Oh, and by the way, I'm still autistic. Which is a good thing. I would be seriously pissed off if ALA turned me into a sheep.

** this blog is a baa-free zone **

Lupron Blues

Kathleen Seidel deserves a Pulitzer Prize in investigative journalism for her Significant Misrepresentations series of articles on the Neurodiversity Weblog, which has thoroughly exposed the Geiers' misrepresentation of their professional qualifications, the total lack of any scientific support for their use of a powerful chemical castration drug on autistic children, and the false insurance claims that have been submitted in connection with their scheme. If prosecutors are on the job, I expect we'll see—in the very near future—several indictments for insurance fraud and conspiracy to commit insurance fraud.

No doubt Mark Geier and David Geier and their crooked accomplices are crying the blues right now, and I've got just the song for them:

Based on "Smuggler's Blues" by Glenn Frey:

There's trouble for the quacks tonight,
I can feel it in my bones.
Quacks who abuse autistic children
With injections to block hormones.
False claims of precocious puberty,
Outrageous insurance fraud.
They thought they'd keep it on the q.t.,
But the truth is out, by Gawd.
They thought they had the ticket
To easy money in their hand.
But Kathleen Seidel blew the whistle,
And things didn't turn out the way they planned.
Bye-bye to the nice house in Silver Spring,
They'll soon be off to jailbird-land.

Too bad for the Geiers it went down like this,
But we've seen through their ruse,
It's the end of their sick business,
It's the Lupron Blues,
Lupron Blues.

The quack doctors and the woo-woos,
All the ways they broke the law,
The pay offs and the rip offs,
And the things nobody saw.
No matter if it's EDTA or Lupron, you know
You've got to file false insurance claims
So you can get some dough.
There's lots of shady characters,
Lots of dirty deals.
Don't talk about insurance forms,
In case somebody squeals.
It's the lure of easy money,
It's got a very strong appeal.

Perhaps you'd understand it better
Standin' in the Geiers' shoes,
It's the ultimate in quackery,
It's the Lupron Blues,
Lupron Blues.

See it in the headlines,
You hear it ev'ry day.
They say they're gonna defeat autism,
But we won't go away.
Autistic Pride Day in Miami, calling for justice in L.A.,
Fifty million of us worldwide,
I mean we're here to stay.
Demanding civil rights from London to Peru,
The bigots want to destroy us,
But there's nothin' they can do.
Autistic people in every neighborhood,
Living next door to me and you, me and you.

Cure's a losing proposition,
But one too few refuse.
It's slick marketing of prejudice,
It's the Lupron Blues,
Lupron Blues.

Hijacked Lives

Blogging can get nasty sometimes. That's just a fact of life in the 21st century. Usually trolls and their noxious rants don't bother me, but every now and then, I see a comment so putrid and disgusting that it just needs to be picked up with a wad of virtual toilet paper, flushed, and a large amount of Lysol sprayed on the screen to get rid of any residue.

No, I'm not referring to any comments posted on my site (although some of the recent ones haven't been particularly sweet-smelling, either). I'm talking about a reeking verbal turd that was deposited on Kevin Leitch's blog by a bio-woo-quack-shill whose claim to infamy includes blatant insurance fraud and chemical castration of autistic children.

Kev wrote about the close personal bond that has developed between his family and the McCarron family, and he also discussed the irresponsibility of journalists who describe murders of children with disabilities in such a way as to imply that the killer's behavior may be understandable. I have rarely seen such emotional depth in a blog post, such genuine expression of caring and concern. I have great respect for Kev's decision (which can't have been easy) to put such intense feelings out there on the Internet for the whole world to see.

The above-mentioned woomeister, for whom I have such total contempt that I won't even bother to mention his name, promptly responded to Kev's post with this sneering comment:

"You’ve officially hijacked the tragedy of Katie’s murder and turned it into a platform for your anti-biomed activism."

That's one of the most wrongheaded and despicable accusations I've seen in a long time. It certainly reveals a lot about the mindset of certain folks in the biomed camp, with their rampant paranoia and their manipulative attitude toward other people's feelings and lives generally. In the Alternative Quackiverse, up is down, day is night, the scientific method is a tool of satanic conspirators, and no one expresses any concern about children's lives unless it's part of a calculated propaganda scheme to sell a new bogus cure. Apparently, the bio-woo-spin doctors find it totally incomprehensible that anyone really could care about the life of an autistic child.

The Katie McCarron online memorial had nothing to do with "anti-biomed activism." Most of the posts written by the participating bloggers, including mine, didn't mention biomed at all. The memorial was about disability prejudice and the consequences of a hateful social attitude that divides children's lives into one of two categories—perfect or worthless.

Although biomed quackery exacerbates and feeds upon such prejudices, neurodiversity is not the opposite of biomed. Nor is it the opposite of child murder, or torture, or any other isolated issue. Neurodiversity is a broad-based philosophy of valuing human life and respecting neurological differences. It stands in opposition to the ignorant prejudices that have hijacked and devalued the lives of so many autistic people, of so many human beings with various differences—no matter how these prejudices may be expressed.

I've started to cry, on several occasions, while reading posts on Autism Diva's website that apparently were meant to have a cheerful tone, such as a description of graduation day at a high school for autistic children. One of the graduating students spoke about how she felt when she enrolled at the school:

"I didn't end up here by mistake. I wasn't going to make it in any other school and so out of necessity I accepted my differences, the whole scope of them. I was by no means happy about it, this was not any kind of liberating experience where I finally felt okay with who I was, this was more of a surrender than anything else. I was pissed that I had gone as far as I had through life being a total freak and not even knowing the extent of it."

She went on to say that her feelings about the school changed because she made friends for the first time and began to view her experience of being rejected by society as a "gift of imperative individuality."

I found this story heartbreaking.

More than 50 years ago, the United States Supreme Court banned racial segregation in the schools, in a thorough and well-reasoned opinion that cited psychological studies of the emotional harm done to children who were treated as belonging to an inferior race. What has our society learned about diversity and equal rights since then? Have we learned anything at all? Once again, we have a system of de facto segregation of the children of a minority group, who are regularly bullied, often excluded from mainstream schools or placed in separate classrooms, and made to feel that they deserve no better treatment because they are genetically inferior "freaks" who cannot be part of society, no matter what they do.

Hijacked lives.

Rashid Buttar's Dirty Laundry

After reading Kevin Leitch's exposé of the many frauds of Rashid Buttar, I was inspired to create this tribute to one of America's most versatile con artists.

Based on "Dirty Laundry" by Don Henley:

He makes his living off quackery and abuse
There's always something--something he can use
People are easy to confuse
They love Buttar's dirty laundry

Well, he coulda had real certifications, but fake ones fit the bill
They just have to look good, they don't have to be real
He's always got a cure-all pill
And lots of dirty laundry

Quackin' when he's up
Quackin' when he's down
Quackin' when he's up
Quackin' when he's down
Quackin' when he's up
Quackin' when he's down
Quackin' when he's up
Quackin' all around

Says he's an expert in food science, and autism besides
He can sell you cures for cancer with a gleam in his eye
It's interesting his cancer patients still die
That's Buttar's dirty laundry

Using IV-EDTA
Is the kid dead yet?
You know, the nurses in his office got a running bet
No decency and no regret
Just heaps of dirty laundry

We all need to find out what's going on
We all need to know just how far it's gone
We're not going to leave Buttar alone
Let's hang out his dirty laundry

Quackin' when he's up
Quackin' when he's down
Quackin' when he's up
Quackin' when he's down
Quackin' when he's up
Quackin' when he's down
Quackin' till they're stiff
Quackin' all around

Dirty little secrets
Dirty little lies
He's got his dirty little fingers in everybody's pie
He loves to cut your bank balance down to size
He loves his dirty laundry

He can do conspiracy theory
He can dance and sing
When it's said and done, he hasn't shown you a thing
We all know that crap is king
With Buttar's dirty laundry

Getting Religion

Enter the Most Exalted Reverend, stage left.

MOST EXALTED REVEREND: Hallelujah, amen, welcome all ye righteous brethren and sisters to the Curebie Church of Everlasting Conformity. If ye have faith as a mustard seed, ye shall say to an autistic child, "Be thou cured," and that child shall sprout wool and hooves, yea, verily, and shall become a perfect bleating sheep, indistinguishable from the flock. (Mustard seeds available at very reasonable discount prices from our friendly neighborhood DAN! practitioner after the service. Praise the Lord!)

CHILD: That's not a sheep! It's a boy with wool glued all over him.

MOTHER: Shh! Shh!

Enter Deacon JBjr, holding the collection plate.

DEACON JBjr: ALA is God! There is no God but ALA! Bow humbly before the sacred altar on which standeth the holy bottles of common dietary supplements! Empty thine pockets into the collection plate! Amen!

CHILD: The Most Exalted Reverend has no clothes.

MOTHER: Say "baa," or I'll have to chelate you again.

Enter a Snake Handler, carrying a cage full of rattlesnakes.

SNAKE HANDLER: Yea, though we walk in the valley of the shadow of death, chelation will not harm us, if only we have faith! Pick up a rattlesnake and be saved by the power of God!

DEACON JBjr: You mean ALA.

SNAKE HANDLER: Whatever.

CHILD: What is the Most Exalted Reverend doing with that worshipper who dropped his pants and bent over?

MOTHER: That's enough, young man! I'm giving you a shot of Lupron when we get home!

Enter the High Inquisitor, garbed as an Opus Dei penitent, holding a bloodstained whip.

HIGH INQUISITOR: The earth is flat! Evolution is an atheist plot! Autism is caused by alien transporter devices beaming mercury into our brains, hence we must wear our tinfoil beanies at all times! Any heretic who speaketh the evil words "scientific proof" shall be burned at the stake forthwith!

CHILD: Ulp!

MOTHER: (Pats child on head) You mean "baa," dear.

MOST EXALTED REVEREND: Let us all turn to page 666 in our hymnals and bleat together in brotherly love.

CONGREGATION: Baa! Baa! Baa!

Mighty Big Fleas

There's an old country saying that "if you lie down with dogs, you'll wake up with fleas."

That saying often comes to mind when I look at blogs and comments by parents who have gotten involved with a biomedical program of some sort. I don't mean the hardcore fanatics who build paranoid conspiracy-theory websites that reflect a total disconnect from reality. Rather, I'm talking about well-intentioned, mostly rational parents who claim that they're just trying different options to help their child, that a particular diet or therapy has been good for their child, and that everyone ought to respect their right as parents to make decisions in their child's best interests.

Well, okay, I don't have a problem with parents who want to try reasonable alternative diets for children who have food intolerances, as long as the children are getting proper care from competent doctors and are not being abused or malnourished. Unfortunately, that often is not the case when we're talking about "biomed" in general. There has been some discussion recently on the autism blogs about the responsibility of bloggers for the consequences of their words; and in my view, that applies with equal force to careless advice, careless stereotypes, and careless endorsements.

This is what I have to say to parents who assert that they are "curing" or "recovering" their child (or similar language) through biomed: You need to understand that when you write something like that, you're not just recommending the nice nutritionist who sold you some vitamins and advised you not to let Johnny stuff himself full of junk food. By making such a broad statement, you are condoning and perpetuating and, by association, making yourself morally culpable for the worst abuses of biomed.

So far, that includes the quack treatment of chelation, which can be fatal. Although some autistic children have been fortunate enough to survive intravenous chelation, they have been put through much unnecessary pain and suffering with no medically proven benefits. The long list of bogus cures has expanded to include injections of gold salts, a rheumatoid arthritis remedy that is known to be highly toxic. Biomed quackery knows no bounds and no shame: there is even a "protocol" for using chemical castration drugs on autistic children.

As horrifying, abusive, and life-threatening as these fraudulent therapies are, it can fairly be argued that the worst crime of the biomed hucksters has been their routine use of hateful and dehumanizing language to describe autistic people. By referring to autism as a plague, an epidemic, an abyss, etc., they have deliberately created a very profitable (for them) culture of despair in which some parents desperately try every sham therapy that comes down the pike, believing that the risk to the child is justified because it's better to be dead than autistic. And it is only a short step, as we have tragically seen, from biomed's cynical marketing of despair and hopelessness to a bleak social environment so bereft of decency and tolerance that some consider it morally justifiable to murder an autistic child.



Them's some mighty big fleas.

Vampire Hobbit Porn Really Is More Popular Than JB Handley

The inspiration for this post came from Kevin Leitch, who recently wrote a blog entry about the unpopularity of Handley's latest site, and from a commenter called M, who responded to Kev's post by suggesting that Handley is "less popular than vampire hobbit porn."

My curiosity got the better of me, and I decided to investigate whether that hypothesis might be true. So I did a search for vampire hobbit fanfiction. (Google showed 32,500 results. Be afraid. Be very afraid.) After discovering some truly bizarre stuff, including a Yahoo group called Pervy Vampire Hobbit Fanciers Anonymous, I picked a suitably creepy story entitled We Wants It.

(For those who are mildly curious but aren't quite bold enough to read the story, Gollum the gay vampire gets a craving for Frodo's tasty throat.)

After that, I went to the Check Page Rank site, put in the URL of the site where the vampire hobbit story was posted (hope.rosiesamfrodo.com) and found that its page rank was 1. Then I checked the page rank of putchildrenfirst.org, which was zero, a big fat goose egg.

So there you have it: Gay vampire hobbit porn really is more popular than JB Handley's asinine conspiracy theories.

Tough toenails, JB. Maybe you ought to add the Dark Lord of Mordor and a few perverted orcs to your list of alleged autism epidemic conspirators. You'd probably get a lot more readers.