On Absurdly Poor Criticism And Advocate Misconduct, Part One

On September 14, 2013, exactly a month before I started writing this post, I was contacted by a colleague who expressed an interest in changes in behavioral practice since Lovaas's original methods and models of clinical treatment.

During the resulting exchange, I attempted to explain a variety of things related to behavior analysis, ranging from how ABA is not a treatment method to the relationship between ABA and PBS (the short version is that PBS is a brand-named philosophy regarding how to go about conducting and using ABA research). I also provided her with a number of assorted articles and writings on the subject, including a piece of my own work which acted as an overview.

I ended the exchange on something of a positive note, hoping that the information would help. The positive note, however, did not last.

This is what she wrote... or, at least, the currently-published version. There has been a rather spectacularly intellectually dishonest edit in the interim. It's, to put it mildly, an extraordinarily poor critique. The arguments are, by and large, spectacularly off-base, and her abuse of my writing is glaringly obvious (if not as much so as before the edits).

That said, I should probably discuss what this means and why it's a problem before I get into a detailed critique of the piece itself.

Contrary to what some people apparently believe, saying that a critique is poor does not mean that one disagrees with its conclusions or that the critique does not deal with real problems. It is saying that the critique misidentifies the issues involved and/or argues from a position of misunderstanding or prejudice.

In this case, the author is attempting to argue that all forms of applied behavior analysis are inherently unethical -- a very, very strong conclusion, one that simply does not follow from the evidence (such as it is) and arguments (such as they are) that she presents. Saying so isn't defending ABA, and certainly isn't excusing, justifying, or apologizing for the assorted abuses with which people have valid complaints.

This is important for several reasons -- not the least of which is that poor criticism serves to distract from real issues, detracts from good criticism, and confuses issues in ways that impair efforts to reform things.

To illustrate this, let's take a very different example, one that most of us can rapidly identify, easily understand, and generally make easy sense of: one of the more disgusting things which occurs whenever news story publishes a story about a black man raping a white woman.

Rape is obviously wrong: it's a gross violation of  a woman's bodily autonomy, a dehumanizing act which can easily (and often does) destroy her life. It is very difficult to think of a worse violation of someone's personhood... and the ethnicity and skin color of perpetrator and/or victim is utterly irrelevant to this.

Unfortunately, however, some people insist on making the moral issue here about race in a variety of ways. One of the simpler (and more vile) of these is to simply state that the act was wrong because a man like that (a black man, not a rapist) has no business sexually touching a White woman.

This is an absurdly poor (and racist) criticism of rape. It is one that needs -- urgently -- to be shouted down and combated whenever it pops up.

Referring to this sort of thing as poor discussion or off-base criticism is very much not excusing the heinous criminal act to which the alleged criticism was directed. It is simple truth.

The race thing serves to distract from the real problem. To the extent to which it gets attention, it's distracting people from paying that same attention to other, more relevant, criticisms.

But... let's say that some people actually took it seriously. Let's further say that they then tried to use it as the basis for political reform efforts.

These efforts would be useless at best and harmful at worst. In fact, that particular criticism can pretty much be considered a form of rape apology in and of itself: if the rape of a white woman by a black man is only heinous because of the race difference, what's wrong about a white man raping a white woman?

More, such "reform" efforts would likely target and harm completely innocent interracial couples. In fact, such prejudices and acts have historically caused very substantial harm in the form of blatantly racist legislation and various racial prejudices for just this reason.

Obviously, this has little directly to do with the ABA article which started this discussion, but does serve to illustrate a few very important points: 1) poor criticism is rarely helpful; 2) poor criticism is often harmful, even when its conclusions may be correct... and 3) stating that an argument is poor is not the same thing as stating that its conclusion is wrong.

In Part Two of this series, I will hopefully get to precisely why the specific critique that started this is poor and unlikely to be helpful. In Part Three, I will discuss just why I'm taking such pains to lay out these problems, why a simple blog post like that has lead to me starting an extended blog-rant, just what followed from the situation, and why it's taken me so long to post all of this.

On Autistics Speaking Day

Today is, once again, Autistics Speaking Day. Through happy coincidence, it also happens to be part of the early voting period in my state's election cycle during a major national election.

I live in Florida. Those of you familiar with practical politics here in the US should have some idea of what this means regarding the significance of my vote.

Guess what? I chose to make my voice heard in a far more significant way than a mere blog post.

It took, as it happens, about forty minutes, most of which was spent in a line. For those of you who go, I recommend bringing a book -- the paper kind -- because the legality of cell phones and the like in voting areas is... well, an issue. It's illegal to use them here; no idea about elsewhere.

And, if the person reading this happens to be a politician? Yes, people with disabilities vote.

And that means that we can vote for (or against) you.

In the end, as I said, that's far more important than a mere blog post. Today, for me, was not just Autistics Speaking Day.

It was Autistics Voting Day.

On Bad Parents

Today is Autistics Speaking Day. To follow in the tradition of last year, I'm going to take the opportunity to talk about something that I wouldn't normally blog about. Be forewarned that this is not -- at all -- a pleasant topic. In fact, it's downright disturbing. If you are a parent to an autistic child, this will be particularly disturbing to you. If you are autistic yourself, it will be equally disturbing in a completely different way. Be forewarned.

Towards the end of September, the blog The Thinking Person's Guide to Autism hosted a series of exchanges referred to on-site as the Self-Advocate/Parent Dialogues. If you haven't read it, I strongly recommend you do so -- including the comments. Yes, I know that's ten-eleven (depending on how you count) blog entries, many of which have an inordinate number of comments. I make this recommendation anyway -- and recommend it strongly.

During that exchange, a lot of issues -- many of which are very important -- relating to the parent/self-advocate divide in the modern autism world were discussed. By and large, the parents present were interested in helping their child and were willing to respect and try to understand the viewpoints and interests of autistic people. And, while I can't directly confirm this, I strongly suspect (and have no reason to disbelieve) that those parents love their children and wanted to do what they could to help them. I believe (and have no reason to disbelieve) that, to those parents, their involvement in autism issues was not primarily about themselves or their personal interests and desires, but rather about trying to raise their children.

One fact, however, was not mentioned during that dialogue, and it's a simple fact that while the above can almost certainly be said about the parents who participated in the Dialogues, it certainly cannot be said about all parents. Put another way, not every parent of an autistic child is a good parent.

"Good" and "bad" are relative, of course, and everyone makes mistakes. I'm not trying to demonize or stereotype the parents of autistic children here.

Still, there's an attitude among parents' groups characterized by the presumption that each parent loves their child and is generally trying to raise their child as best they can. There are three real problems with this -- and I've already discussed the first one. Specifically, parents are human and thus fallible. Even if a parent is trying to raise their child as best they can, this doesn't mean that they are.

The second problem with that presumption is far simpler. It simply isn't true.

I know I've repeated myself here. This was deliberate. The point needs to be driven in -- preferably with a metaphorical sledgehammer.

For years, I've been reading coverage of parents doing truly awful things to their children. Take for instance, Marguerite Famolare, as quoted in this article about the Judge Rotenberg Center. According to her, the center's systematic torture of her child is great -- after all, if she shows him the remote control to his shock harness:

He'll automatically comply to whatever my signal command may be, whether it is 'Put on your seatbelt,' or 'Hand me that apple,' or 'Sit appropriately and eat your food,'" she says. "It's made him a human being, a civilized human being.

I have to rather strongly disagree with her definition of humanity. Beyond this, I think that the quote speaks for itself.

Then there's the case of Karen McCarron, who I recently learned is trying to appeal her well-deserved sentence and get a new trial. Her story is, in a way, much simpler to explain -- she murdered her daughter and blamed her actions on said child's reified neurology. According to her lawyer, McCarron believed that Jesus would bring her child back, sans certain reified aspects of how she learned and experienced the world.

I did not select these two cases at random. While I could have picked from a lot more, including many not on that list (which is rather outdated at this point), they serve as illustrations of the fact that there are some phenomenally bad parents out there. Some of said parents have autistic children.

More importantly, however, they serve to illustrate another factor -- the ways in which certain attitudes prevalent in the autism world can be used as justifications for truly monstrous acts towards autistic people. When I object to, for instance, the reification of autism, I am doing so for damned good reason. When I talk about psychosocial stigma, I am not talking about something even remotely close to trivial.

Finally, these cases are public -- they have public documentation which I can link to. Trust me, I have a lot of examples from personal experience. I've spent a surprisingly large amount of my professional life trying to clean up the messes that bad parents and poor parenting decisions (of various sorts) have left behind.

The third problem with the attitude I referenced is central to the attitude itself and not the underlying beliefs. There is an old saying that "sympathy for the guilty is treason to the innocent." The saying -- and the underlying meaning behind it -- apply here. Yes, parents of autistic children often function without adequate support, are stressed, are under incredible pressures, etc. If, however, we choose to allow this to detract even one iota from our condemnation of this sort of parent's inexcusable actions, if we say that Karen McCaron's actions were "really about a lack of support" or some such, we are essentially arguing that the act of torturing or murdering an innocent child is excusable.

I disagree with this in the strongest terms possible.

Such actions need to be condemned. We, as a community, owe that duty to Karen McCaron's and Marguerite Famolare's victims.

I have, at this point, been writing this blog entry all day -- essentially dropping everything else in my life to do so. It is, however, phenomenally difficult for me to do so. As I type this sentence, it is 6:17 in the evening. I have been writing this almost since I finished breakfast.

As the amount of time I've spent on this text implies, this is not an easy topic for me to write about. I don't even like to think about parents such as those two. I originally intended to write far more about them than I did... but gave up on several (actually rather important) points simply because I couldn't bring myself to write them. In fact, I even dropped one major and prominent example of bad parenting from my list -- simply because I didn't think I could stand writing out another paragraph detailing such behavior. I know for a fact that I will regret that decision.

I would love to think that every parent was a good one, that (all) parents could be trusted to act in their child's best interests, and that we could count on parental love to ensure that our parents would be our allies.

Unfortunately, I know all too well that this is simply not true.

An Open Letter to Buzz Aldrin

Today is Autistics Speaking Day. For those of you who are unfamiliar with the event, it's an autistic reaction to the highly-misguided "Communication Shutdown Day", a day in which we autistic people make as much online "noise" as possible... on the day in which hordes of people are voluntarily abstaining from our preferred means of communication.

I won't discuss why the whole idea is a bad one. Others have already done so -- far better than I ever could. Instead, I'm going to post an open letter to one of the major participants in this farce.

Dear Mr. Aldrin,

When I was a child, the Apollo missions were a great inspiration to me. They truly stand out among the achievements of mankind as a spectacular triumph of science and a shining example of what man is capable of if we truly try. You, along with the other Apollo astronauts, were my childhood heroes. Your triumphs fanned the flames of my love of science, helping raise it from the bare embers of a childhood interest into a lifelong passion. Your successes comforted me when things seemed hopeless, helping to reassure me that even the seemingly impossible was often within reach.

Today, I am a graduate student in Nova Southeastern University's M.S. Counseling program and working towards board certification as a behavior analyst. My dream is to go into psychological research and to help raise the standards of the discipline to the point where psychology and the other "soft" sciences can be legitimately compared to the "hard" sciences in terms of methodological rigor... and to come, bit by bit, closer to the countless truths I seek. This is not to say, however, that I do not face substantial challenges in reaching my goal.

The worst of these challenges are prejudice and fear. You see, I have a disability. One of my professors flat-out told me (in writing, no less) that having it was unprofessional... in a course where a third of the course grade was participation and professionalism. My clinical ethics textbook states that I am not human. Fear-driven efforts to create a world without people like me in it have already claimed countless lives throughout the world, including at least ten innocent babies in California... this year alone. There's even a clinic within easy driving distance of my house dedicated to chemically castrating people like me.

My disability is most commonly called "autism".

This is why it hurt me so incredibly much to hear that you, one of my childhood heroes, has been raising money for a fear-mongering antivaccine group dedicated to the goals I mention above. I can only hope that you did this out of ignorance; the thought of you having done so knowingly just hurts far too much.

As you may or may not know, the proceeds from Communication Shutout Day go to the program's "global partners". In America (outside Colorado), this means Giant Steps, the Hollyrod Foundation, and the National Autism Association. It's this last which is the most concerning.

The National Autism Association is an anti-vaccine group dedicated to promoting untested, unproven, and often dangerous "treatments" for autism. They praise intravenous chelation (which risks death and brain damage, and, more importantly, involves pumping an irritant into a child's veins for at least two hours at a time). Their 2009 conference, which was held within walking distance of my house, featured a keynote presentation by Andrew Wakefield (whose unethical conduct and Mengele-like "experiments" were largely responsible for major measles outbreaks throughout Europe), a presentation blaming my neurology on MSG in vaccines, and a presentation on why my neurology should be considered a disease (among countless other things). One of their past conferences even involved a keynote from an infamous quack who makes his living chemically castrating autistic children (and who is responsible for the clinic near my home). They recently were involved in a concentrated effort to effect legislation here in Florida which would have effectively banned the flu vaccine. I am perfectly willing to provide references and further information on any of these assertions on request.

Mr. Aldrin, you are old enough to remember many of the diseases which vaccines prevent. For instance, with polio alone... the iron lungs, the countless children who were crippled for life... to groups such as the NAA, bringing back these things is worth it if it means not having people like me or my friends around. You should also remember Jonas Salk and his heroic dedication to the welfare of the children of the world. To groups such as the NAA, Jonas Salk and countless others like him are villains. I find it difficult to express the sheer perversity of this.

I will admit that the NAA has also campaigned against the more "classic" abuse of children with disabilities in the forms of seclusion and restraint. This, however, mainly serves to help legitimatize them and to help them lend support to other, wackier anti-vaccine organizations such as Generation Rescue, SafeMinds, and the National Vaccine Information Center. In a recent conference presentation on the NAA, I referred to them as a "gateway organization" because of their function in such groups' recruitment tactics.

I won't pretend that this is the only thing wrong with Communication Shutout Day. I strongly encourage you to read what Ari Ne'eman of the Autistic Self-Advocacy Network has written about the matter ( http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=122 ) and to peruse the various online writings relating to Autistics Speaking Day and the reasons for it.

In the meantime, however, I have to go to bed tonight knowing that one of my childhood heroes has chosen to raise funds for a group whose dedication to creating a world without people like me in it is so strong that they are perfectly willing to sacrifice the lives of countless innocents to create it.

Sincerely,

Alexander Cheezem

The Bigotry Defense?

Some of you may be familiar with the Alex Barton/Wendy Portillo case. For those of you who aren't, it started two years ago, when a kindergarten teacher (Portillo) had her class list off why they didn't like an autistic classmate (Alex Barton) and then had them vote him out of her class. To briefly summarize a really, really long story, Alex is now doing quite well academically in a different school district (although he still bears emotional scars), Wendy Portillo is back in the classroom (retaining her tenure) and again abusing students, and Alex's mom, Melissa, has filed a federal lawsuit against the Portillo and the St. Lucie County school district.

I'm writing this blog entry about that last one. You see, the school district's defense is apparently going to be something along the lines of the argument that the incident didn't hurt Alex... because autistic children can't understand -- or be hurt by -- "negative social feedback" (or, in other words, someone else doing something nasty to them).

No, I'm not joking.

After going through quite a bit of trouble, I've managed to obtain some of the documents that the district's submitted in their defense. Specifically, I've obtained the "expert testimony" that they commissioned from two doctors: Dr. Sue Antell and Dr. Max Wiznitzer.

These are quotes from public documents available on PACER, albeit not for free. I had to jump through a lot of hoops to get them (although, admittedly, most of these were technical -- I didn't bring a memory card with me when I went to visit my school's law library, the law library's one computer set up for PACER access was an antiquated technical nightmare, and I didn't want to unnecessarily spend money to get the documents from my home system), but they're still technically public domain. As such, I've uploaded them to RapidShare to cut down on the metaphorical red tape. Feel free to host them elsewhere.

I'm not going to comment over-much on them. I'm going to let what they wrote speak for themselves. I will, however, clarify a bit on both.

To start off with, there's this section of Dr. Antell's testimony -- delivered before she ever met or examined Alex (whose full name is Caleb Alex Barton, although he does not respond to "Caleb"):

... Based upon this review, it is my opinion that CAB probably does have Autism, a disorder of language, executive functioning and social relatedness, which profoundly impacts upon how a child perceives and reacts to the language and behavior of other people.

It is further my opinion that the events described would not be expected to have any long term impact even upon a typical child who might appreciate more of what was going on around him. As they grow up, children experience numerous negative or unpleasant experiences with peers, teachers and parents. Such experiences are part of the normal experience of development. They serve to help a child develop an appreciation for the impact of his behavior on others in his world, and are important in the development of sympathy, empathy, and altruism. This is quite different from the constant and chronic bullying which we unfortunately see somewhat among older children, or the chronic systematic emotional abuse of a child by the adults in his life. In any child with Autism, such experiences are going to be processed quite differently. Depending on the extent of the pragmatic language dysfunction, the lack of social relatedness, and the impairment in the ability to appreciate another's point of view (what psychologists call "Theory of Mind") it is quite likely that many, if not most children with autism would simply have no emotional connection to such events. While they might encode and recall the "script" (i.e. the language used and the actual events), their ability to be emotionally impacted by what is almost entirely a language based experience would be anticipated to be exceedingly limited. This is not to imply that Autistic children cannot experience trauma. Rather it attempts to distinguish between possibly unpleasant events which are the result of linguistic exchanges from more primitive responses which might involve non verbal actions, or verbal communications which would produce feelings of fear or terror which are generated by non cortical brain regions.

Beyond this, we have the opinion of a qualified child psychiatrist that CAB suffered no emotional distress as a result of this incident, and another who described behavior with autism but not PTSD.

Based on the foregoing, it is my opinion to a reasonable degree of neuropsychological probability that CAB has not demonstrated any real evidence of emotional distress as a consequence of the events of 5-21-08. It is further my impression that he does not require any ongoing treatment, and depending on his ability to appreciate what is happening in such therapy, that this poses a risk of creating a trauma where none actually exists.

Two clarifications: "The events described" were the vote-out incident. The same is true of "the events of 5-21-08".

And then there's Wiznitzer's testimony:

In summary, Caleb Barton is an 8 year old boy with a diagnosis of an autism spectrum disorder (Asperger disorder) and behavioral features labeled as attention deficit hyperactivity disorder (including compatible rating scales). He has a history of challenging behaviors in kindergarten with no details of his behavioral functioning since that time (except for the report of Dr. Coleman). School records document impairment in social interaction with peers (supported by psychiatric evaluations). Assuming that his diagnoses are accurate, it would be difficult for a child with a significant impairment in socialization (compounded by the social issues associated with ADHD) to fully process and comprehend the impact of negative social feedback from peers (as stated by Dr. LoSardo "on some level he probably didn't get social significance"). Therefore, this type of event would not be expected to result in PTSD.

Dr. Wiznitzer's testimony is nowhere near as bad as Dr. Antell's... but really.

To the St. Lucie County school board, however, I have only one thing to say.

Some Links That May Have Passed the Neurodiversity Community By

Just as a series of quick notes while I try to recover some strength for next week's midterms:

Not too long ago, two reporters of my acquaintance wrote an excellent article for the Miami New Times regarding the Geiers and their political antics. They blogged on the affair (and what it says about the media) on Thursday; the entry is of general interest to the autism-relevant communities.

Almost exactly one week ago, Peter Bell and Geraldine Dawson of Autism Speaks held a pair of "forums" here in South Florida, one in Miami and one in Boca Raton. A recording of the Boca Raton forum is available in two parts here and here. I spent a good part of the week transcribing various parts of these recordings -- trying to get a record of the more notable quotes and timestamps in them. I've finished with Part One (Bell's presentation), but have yet to even start on Part Two (Dawson's presentation and the subsequent Q&A). This is unfortunate, as there's some genuinely good/useful stuff in that part.

Cleaned up somewhat, my transcript (which has various notes, etc.) reads as follows:

Part 1/Ross:

10:31 : Their advocacy efforts -- "a way in which we give the autism community a voice."

12:52 : Start of a discussion of his son's "regression".

13:14 : Implicit endorsement of the opioid excess theory (and the GF/CF diet).

14:42 : Start of the "duplo discussion" (sequence RE son's play styles)

15:28 : "... he basically disappeared in front of our eyes."

21:08 : "We're also, ah, as I said, getting ready for the adult years, um, we're actually, we had our first meeting, ah, about, ah, guardianship last week, um, which we'll be going through when he turns eighteen in January..."

25:54 : "And autism today, in some people's estimation, is an epidemic. Um, certainly the increase in the last twenty years, which we, uh, estimate at about six hundred percent, um, has reached epidemic proportions. It is better understood; um, I think most researchers would say that it's not well understood yet. We, uh, have some ideas about what some of the causes might be, um, but, ah, we certainly don't know what probably is behind the vast majority of the cases. Um, it is considered a spectrum disorder, um, I mentioned, ah, before, ah, how there are different types of autisms, um, and uh, certainly we refer to autism these day, these days as autisms, and, uh, that there are multiple types of autism. It is, by and large, considered to be a treatable disorder, ah, this notion of 'recovery' is real. Uh, and I use the quotations over 'recovery' because it's more or less a term that's defined by no longer meeting the criteria of autism after having been previously diagnosed with it, um, and it is believed that anywhere between maybe ten to fifteen percent of cases of autism, um, the child does recover or ultimately lose his their diagnosis."

27:22 : "The earlier you get it, the better the outcomes are going to be."

28:28 : "We're fortunate in that, in the mid-1990s, several national organizations were established, one of which Jackie referenced, was, which was the National Alliance for Autism Research, which had an amazing presence here in South Florida, largely because of Jackie and all the efforts that she did. Ah, another organization that was founded around the same time was Cure Autism Now, which was based out of Los Angeles. And CAN and NAAR, really, between the two of them are largely responsible for having created what is now the research -- autism research -- field, which, ah, probably totals or numbers at least two thousand scientists around the world who have dedicated their careers to autism."

29:07 (Continuing): "Um, the DAN! movement also happened around the same time, um, and sure some of you have, ah, seen DAN! doctors and so forth, and, ah, certainly, uh, this whole attitude of thinking of autism as something that they can actually ameliorate and make better and so forth, um, again, I think also contributed to that whole notion."

30:19 : (Some credit-mongering/AutSpeaks bragging. Not really politically useful, but worth listening to.)

32:58 : "We're also very involved in family services; this was a department that was formed not long after the merger with Autism Speaks, and that's about helping families, ah, live a better life through quality of life for those who are living with autism today." (compare the numbers)

35:15 : "We're very proud of, um, what we're able to do in terms of helping families."

(Discussion of what they do to "help families".)

51:10 : Community grants in Florida. Total $136,435 over three years. Compare Geri Dawson's salary.

51:56 : "Uh, we have funded, uh, four different CARD programs throughout the state, um, as you found listed here."

54:41 : "So let's shift gears and talk a little bit about advocacy and, uh, what we do in government relations, and, as I said before, this is all about giving those that have autism and their families a voice. Ah, I will do a little bragging down here and say that our AutismVotes website, which is AutismVotes.org, did recieve a Webbie award, basically being one of the best healthcare sites, ah, that's available, ah, for political campaigns."

(Lots of credit-seeking.)

56:39 : "And we've also to ha-have more dialogue with the office of disabilities. We do recognize that autism is part of the larger disability community, and so we've started to make some inroads in helping to figure out what place autism has in that, within that spectrum."

1:07:43 : "Believe me, when I go home tonight, and it probably won't be until tomorrow morning when we all wake up, 'cause I get home very late, uh, in the wee hours of the morning, but I'm very cognizant of the fact that when I wake up tomorrow morning and see my seventeen-year-old son, it's going to be hard to think about the progress that we've made, 'cause he still has autism, and his life is very challenging."

(Closing remarks from the 1:07:43 timestamp are well worth listening to.)

1:09:37 : "It is still a public healthcare crisis, or a 9-1-1, so to speak, um, we have to make sure that people recognize that we have, for the most part, an unexplained six-hundred percent increase in the last two decades, and we need to understand why. Um, and there is absolutely a sense of urgency in terms of what we need to accomplish in order to get the answers that we need."

1:10:31 : "I think it's also critically important that people with autism have a voice in this. Um, and even if you're not able to communicate verbally, doesn't mean you're not able to have a voice. Um, I know we, as uh, a-y'know my son is is marginally, ah, communicative, ah, or verbal, um, and y'know it's hard to really get a sense of what is it that he wants out of life and what is his future, but y'know what, we, we go through great, um, ends to try to figure out what it is that he wants, um, and I think that we have to, as a community, stop and listen, and listen to the individuals that have autism, and, and have them be a part of what we're, what kinds of decisions that we're making on their behalf."

In Response to Ven Sequenzia

I recently came across this petition, which states that the Brittish GMC's "persecution" of Dr. Andrew Wakefield is "akin to the persecution of Semmelweis." I also noted that signer #1,144, who left a rather long and rambling comment, was a Mr. Ven Sequenzia (assuming, of course, that he is not an impersonator).

I wouldn't normally respond to such, considering, but I happen to know Mr. Sequenzia, both by reputation and in person. He is, after all, the president of Florida's branch of the Autism Society of America.

Of course, the very fact that Mr. Sequenzia signed a petition of this sort is a problem. His comment was more of one. As such, I'm going to branch out somewhat and write a reply of the sort used by some of my fellow bloggers.

I met Dr. Wakefield several years ago and also listened to him testify to Congress, read some of his research and felt that there was something there that could affect or impact some children on the autism spectrum. While I understand there is a feeling from the medical community that anyone who questions the medical establishment is a nut case or is trying to insight panic, I get the sinking feeling that the medical establishment is doing the same thing here.

Umm... no. First off, there's a long tradition -- within the medical establishment -- of questioning established belief. It's called "science".

Questioning established beliefs -- and testing them to see if the evidence supports them or not -- is the bread and butter of science. Questioning the way you go about this and trying to find better processes for testing your beliefs is also a very large part of the scientific process.

Of course, like everything else, science has rules. A very large part of the matter is the fact that Wakefield didn't follow them.

I respect that there is a question of research and how it is accomplished. I also respect that there are several medical professionals that believe they are right. That doesn't mean they actually are right. The biggest problem with autism, the medical community and families dealing with it, is the need for everyone to be right. The problem is, there is no right or wrong. There is only what you and your child or adult with autism has to live with every day, what you can do to address how it affects your family and how to treat the issues that arise.

Umm... no. To throw out a few examples: if you chemically castrate a child in the name of pseudoscience, that is wrong. If you falsify data and violate the Nuremberg Code in the name of personal financial gain, killing countless children in the process, that is wrong.

This, of course, is in the moral and ethical sense. The factual sense is a great deal more straight-forward... and every bit as complicated in its own way.

Sure, there are treatments that help some. There are also treatments that harm some. I am all for making sure that families don’t get harmed and don’t subject their child with unnecessary treatments.

Yes, and how do you know what really helps and harms? That's the real question -- and people are horrendously bad at answering it. Science, as a whole, is built around methods to compensate for the various things which mislead and deceive us. Ignoring the "rules" of science (which do allow you to "break" a number of the "rules" -- provided you can justify doing so -- and remain within the bounds of good scientific practice) means letting these various biases creep back in.

In medicine, where the costs of false beliefs are often measured in millions of dollars and thousands of lives, good science is especially important and fraud is especially costly. This is a large part of why Wakefield is so hated by many people.

What I don’t understand is how many children have been harmed by Dr. Wakefield’s research?

The short answer is "thousands". Wakefield's academic fraud single-handedly caused a series of major outbreaks of vaccine-preventable disease within Brittan. The anti-vaccine movement which he brought back to prominence has already caused many more such outbreaks. Here is a small sampling of relevant documentation.

On top of that, there's the matter of the children Wakefield harmed directly. While the absolute magnitude of harm may pale next to the above, these children were Wakefield's direct responsibility -- often entrusted into his care as a physician. It is difficult to explain the sheer magnitude of misconduct represented by a physician ordering a medically unnecessary colonoscopy and lumbar puncture of a patient under his care for research purposes. It becomes difficult to even contemplate the sheer magnitude of misconduct and irresponsibility involved when a physician also fails to get approval from the relevant ethics committees and informed consent. It's a clear violation of pretty much any of the relevant medical ethics codes and constitutes the committing exact same violations that Josef Mengele was famously guilty of... and then some.

Of course, this disregards things like the stigma created by the anti-vaccine movement and the resources needlessly spent countering Wakefield's efforts to undermine the world's disease prevention programs. Factoring them in only makes things a great deal worse.

How many have been helped by it? How many children are better because of it? Has anyone from the medical establishment studied that? I doubt it. If so, please get me the information.

I would argue that the answer to this is "none", but the truth is rarely that simple. Sheer serendipity means that some children have benefited from the increased attention on gastrointestinal issues in autistic children, for example, and I'm pretty sure that Wakefield's fraud has been generally beneficial to the college funds of the children of DAN doctors.

The concern I have is how the medical community is always looking for ways to prove someone else wrong. Isn’t the purpose of medicine to treat an individuals’ health issue and provide support to the family dealing with that issue?

To an extent -- although the most of findings against Dr. Wakefield have to do with his practice of medical science, not medicine per se. The purpose of medical science is to find out what is and is not true as well as what does and does not work.

This said, I would like to point out that the findings against him include him ordering unnecessary (and not clinically indicated) invasive, dangerous, and risky medical procedures for research purposes. In other words, he hurt and risked the lives of patients under his care for no benefit to them. He also lied to their families, claiming that certain procedures were "routine" when they were anything but.

If so, then why is everyone so polarized about the possibility that something could contribute to helping these children be in less discomfort?

"Because some people understand science and others don't," is the short answer. Those of us do realize that the vast, vast majority of promising new treatments -- for anything -- don't pan out. As most treatments involve substantial risks and notable side-effects, this means that using an untested treatment outside a formal research protocol (and sometimes even then) is flat-out irresponsible.

There are 1 million opinions about what autism is, what it isn't, what caused it, what doesn't cause it, how to treat it, how not to treat it, etc., etc. These opinions come from medical experts, parents, individuals living on the spectrum and everyone in between.

Yes, and in as far as many of these deal with facts, most of them are wrong. Any decent scientist knows this. That is why claims need to have evidence behind them, why we focus our investigations on those most likely to be true. When scientists have to divert their energies to investigating those theories without good evidence behind them, we all suffer. Nothing beyond a basic understanding of probability and game theory is required to understand that.

I know that when my daughter was diagnosed the number was 1 in 2,000 (girls). Now it is 1 in 91. I few years ago I was at a conference and I spoke to a respected expert on autism from northeast. This expert vehemently denied that there was any increase in the number of cases of autism. This doctor stated it was purely “better diagnosis and medical professionals looking for the signs”. This same doctor and many others have now retracted that position and admit there are more cases and something must be contributing to it, including the environment.

You're forgetting changes in diagnostic criteria and their practical implications. There may have been a true increase in the "real" autism rate over the last few decades, but all evidence is that if there has been one, it's been tiny, and not at all as significant as you are trying to portray.

Several years ago there was a communication method that was discovered in Australia called Facilitated Communication (FC). A professor from New York brought it to the US. There was much excitement about the prospects of a new communication method for individuals with autism. Many non-verbal individuals with autism started to communicate for the first time in their lives. Some stopped having tantrums, some started to relate to their environment better, some even started to speak for the first time. It is believed that many of these non-verbal individuals were intelligent, but their disabilities (autism) was hindering us from seeing through the behaviors and actually believe that these people had a new way to communicate. Well, the medical establishment was afraid of the ramifications of such a possibility and started demanding double blind studies, etc.

Umm... no. Scientific methodology requires that claims be substantiated. The proponents of facilitated communication made extraordinary claims about the efficacy of their intervention. If it actually worked -- and they'd had the evidence to back them up -- this wouldn't have been a problem. They did not, however, have this evidence.

For a while, it appeared that facilitated communication did indeed work. Realizing that a very large number of things could make an intervention appear effective when it really wasn't, however, scientists investigated.

An ineffective intervention -- even if it appears effective -- is merely a waste of time and resources. It is generally considered unethical to use an intervention which is known to not work. More than that, however, was at stake with facilitated communication, as you noted yourself in your next sentence.

The fact that these children stopped tantruming or communicated that some individuals were abusing them both physically and sexually made the medical community even more concerned.

The very fact that such accusations existed made determining the reliability of facilitated communication even more critical. If the accusations were true, any weakness in the evidence supporting facilitated communication could have been used to help the guilty parties get away with their crimes. If facilitated communication did not work, however, then these accusations were by and large false... and innocent men and women were being accused of things they did not do.

As it turned out, facilitated communication didn't work. While the facilitators believed it did, the vast majority of the "successes" of facilitated communication really depended on something called the ideomotor reflex. Facilitators were essentially using the children's hands as pointers on a Ouija board.

This was not a new problem, either. The parallels with the repressed memory debacle, just to throw out one example, are striking.

Of course, there is no proof that it didn't work in all cases -- it's quite likely that it did in some. The more fundamental problem, however, was that the facilitators couldn't tell whether it was working or not, tending to think that it was working when it really wasn't. This, in turn, lead to the "fall" of facilitated communication.

It's a shame, in many ways, that this happened. The philosophic base of facilitated communication was far better in a lot of key respects than the philosophic bases of most autism interventions.

They couldn’t believe that non-verbal, beautiful children (and adults) could possibly be the target of such abuse. They also were so concerned about these children, that they made it their mission to disprove the communication method entirely, without allowing time for further investigation or time to work with the individuals communicating to see if maybe there was anecdotal evidence of it being a reality.

No, they conducted that further investigation, as per the rules of science. Contrary to your insinuations, good experimental design does not consist of ensuring that an intervention cannot pass the examination. It consists of ensuring that tests are as fair and thorough as realistically possible.

Anecdotal evidence is subject to all sorts of bias, ranging from selection bias to expectancy effects. This is why few scientists trust it or view it as reliable.

No, we had o subject these people to testing and blocking the facilitator from knowing anything and disprove the possibility of it being real, because it would have thrown out 50 years of thinking that people like my daughter had an IQ of 35. The medical professionals that test IQ even admit that the standard tests aren’t valid for autism in many cases. The sad part is no one who was associated with FC claimed it was a cure. No one claimed it to be anything more than a communication method for some individuals on the autism spectrum.

That is what was tested, but that was only part of what was claimed.

Today, Amanda Baggs who has autism communicates through typing independently and she started out using FC.

The question is whether she learned to communicate because of FC or despite of it. Another part of the problem is whether what they had could properly be called "facilitated communication", as I've seen several descriptions which most certainly don't match what the peer-reviewed literature describes. I could discuss this for quite a while longer, but I do not see what the FC debacle has to do with Wakefield's misconduct and fraud.

The odd part is that medical establishment says she never used FC or that she is not communicating herself, even though she does it independently.

Umm... no. I won't deny that elements within the clinical establishment say this, but this sort of blanket statement is a drastic mischaracterization of the clinical and medical establishments.

Does this sound at all familiar to the current situation with Dr. Wakefield?

Nope.

Obviously, we are talking about completely different issues, but the same medical community that challenged FC challenges every possible thing that could upset the “established thinking” because they care about you and I and our children on the spectrum.

Umm... no. Again, the medical and scientific communities challenge every novel claim because science is the testing of claims.

I do believe they care, but I think they care more about being right then about being open minded to other possibilities. The scientific community spends their entire life trying to disprove things.

Umm... no. As I've written above, science is about testing things. As such, scientific claims are tested. This is very close to tautology.

The interesting part of all this is the fact that many believed to be on the autism spectrum are some of the brightest people on the planet - Einstein, Bill Gates, Temple Grandin, etc. People thought Einstein was crazy at the time. It is a normal reaction to try and disprove things.

Put bluntly, you are confusing burden of proof and assimilation bias... and the way you are defending a "doctor" who deliberately risked the lives of his patients for personal gain is disgusting.

It is our nature to be that way. Individuals with autism and their families deserve every opportunity to investigate anything that can help them to become more productive and happier citizens.

They also deserve accurate information and good ethics. The irony here is overwhelming.

If a child has a gut problem and eating a different diet can help, then why shouldn’t they have that? If there is a chance that one child is affected negatively by a vaccine, an environmental insult, a dose of antibiotics, etc. shouldn’t we be able to question the establishment and where appropriate provide remedies to address the problem?

If the child really does have a gut problem, then yes, that's accurate. If the child's parents are being lied to and told that the child has a gut problem when he really doesn't, that's another matter.

Similarly, the whole vaccine thing has been thoroughly investigated. It's not what's going on. Get over with it and move on.

Isn’t it our duty as citizens and parents to question the powers that be and when we think there is a problem to question it? I am not a conspiracy theorist, but the current climate sure seems to be one of covering up, diverting attention and condemning anyone who questions the status quo.

It certainly is such in anti-vaccination circles. In scientific circles, it's only condemning of those who break the rules of science in the name thereof (e.g. Wakefield).

As for parents -- note above. They, like autistic individuals themselves, deserve accurate information and good ethics. The scientific process is designed to produce the former. Many of the findings against Wakefield include bypassing safeguards designed to ensure the latter.

Yes, there are many who try to capitalize off of the less fortunate and parents and individuals with autism are targets for this. I understand that the medical community feels it has to protect us from everything, but we are intelligent people and I am tired of the condescending attitude that prevails in the medical community.

Intelligence doesn't assure good critical thinking skills. Jenny McCarthy and her followers illustrate this pretty spectacularly at times.

I also suggest that you start to learn about medical bioethics. Frankly, your comments show a startling ignorance of the subject.

We have rights, we have free will, we can read, we can judge for ourselves.

Well, yes. The same can be said of us (ie. autistic individuals). Doctors are well aware of this -- that is the reason why there is a requirement for informed consent which is pretty thoroughly enshrined in medical bioethics.

Allow us the opportunity to challenge your opinions, no matter how many letters you have after your name. Allow us to question your motives as well.

Science is all about this. Again, as stated before -- there are rules to science. Learn them. Follow them. Then, and only then, will your criticism make sense to doctors.

If I didn’t challenge the school system about my daughter’s needs, she would be in a much different place today. If I didn’t challenge the notion that she had the ability to communicate, she would be in a much worse place today. The sad part is, the reason people believe what I say is because of who I am, not because it is true or false. It is unfortunate, because so many more could be in a better place, if people believed in them too.

This is a pretty blatant red herring argument. School personnel aren't medical personnel, and the school system's attitudes and actions are not those of the medical establishment.

That said, I'm neither saying that doctors are perfect, nor that there isn't room for improvement in how things are done. Giving credit where credit is due and assigning blame where it belongs, however, are basic principles of ethical behavior. Medical doctors no more deserve the blame for the school system's misbehavior than my sixth-grade math teacher deserves the blame for the abuse I suffered in high school.

Your long, rambling, and incoherent defense of a monstrously irresponsible clinician and a spectacular academic fraud, however, is simply disgusting on multiple levels. Please -- study the issue more before you commit like this. As is, your actions are likely to cause more harm than good.

Edit: I just ran across this interview excerpt, which deals with a lot of the scientific issues I'm talking about above in a manner far better than I ever could. Read. Enjoy, too -- it's utterly hilarious in addition to being absolutely right.

Restraint & Seclusion Legislation National Call-In Day

Today is Restraint & Seclusion Legislation National Call-In Day. Lacking the energy to do a proper write-up, I'm just going to copy ASAN's announcement on the topic.

I've made one minor alteration, by removing a text-based spelling out of a URL and replacing it with a link.

Dear Friends, Advocates and Community Members,

In one week, Congress will come back in session. The Autistic Self Advocacy Network (ASAN), in conjunction with the Alliance to Prevent Restraint, Aversive Interventions and Seclusion (APRAIS), is asking you to join us in a National Call-In Day on Thursday, January 21st to tell your members of Congress to support the Preventing Harmful Restraint and Seclusion in Schools Act (H.R. 4247/S.2860) introduced last month by Representatives George Miller (D-CA) and Cathy McMorris-Rodgers (R-WA) and Senator Chris Dodd (D-CT). This legislation would provide students with and without disabilities vital protections against abuse in schools. We are providing details on how to contact your members of Congress -- please distribute this announcement widely.

WHAT YOU CAN DO:

Please call this coming Thursday and encourage your friends, family and coworkers to participate by dialing the Capitol Switchboard at 202-224-3121 and asking for your Congressional representative to Co-Sponsor H.R. 4247, and your senators to Co-Sponsor S. 2860.

• To find out the names of your US Senators and Representative, click here
• Ask for the offices of your US Senators and Representative
• Ask to speak to the person working on education issues
• Identify yourself as a constituent and the organization that you represent (if any)

Message: " I am calling to urge (Senator y) to cosponsor S.2860, legislation preventing harmful use of restraint and seclusion in schools."

Message: "I am calling to urge (Representative z) to cosponsor HR 4247, legislation preventing harmful use of restraint and seclusion in schools."

Thanks for your advocacy. Increasing congressional support for these bills will help move them through the legislative process towards enactment. Please call on January 21, 2010 and tell your friends and family to join you. If you are interested in doing more, please e-mail us at info@autisticadvocacy.org for information about how you can arrange a meeting with your representatives to explain why this bill is essential or visit www.tash.org/aprais to learn more.

Regards,
The Autistic Self Advocacy Network and the APRAIS Coalition

On Exhaustion, Part Two

I have memory issues -- pretty significant ones, at that. Without the extensive use of mnemonic devices and various external memory aids, I wouldn't be able to make it through the day. Despite this, my memory significantly outperforms most people's in many respects. It's one of the many ironic aspects of my life.


When I'm especially tired, however, another aspect of this pops up. My memory issues get worse and worse as I sink into exhaustion. As if this wasn't bad enough, however, when my exhaustion passes a certain point, I start to actually misremember various things. While this starts with minor details, it progresses if I don't get some desperately-needed rest.

I passed that point yesterday.


This is very much not a good thing. Fortunately, I detected what was going on pretty early and excused myself from an ongoing advocacy case to get the rest I needed. I won't be doing any direct work in that for a while.