A Few Things You Probably Didn't Know About Hyperbaric Oxygen Therapy

As with megavitamin "therapy", hyperbaric oxygen as a "treatment" for autism can be accurately classed as too much of a good thing.

In medicine, too much of a good thing can be a very bad thing, and the research reflects this. Essential nutrients can easily become poisons if you consume too much of them, and many of today's common medical problems can be laid at the feet of too much consumption of essential macronutrients... and macronutrients are generally far better tolerated than the micronutrients which are used to excess in "megavitamin therapy".

In fact, hyperbaric oxygen chambers allow for a greater exposure to oxygen than would normally be theoretically possible. Put into more technical language, a hyperbaric chamber allows for partial pressures of oxygen within the lung that wouldn't be possible without active pressurization.

While this isn't the only mechanism of action for HBOT (for instance, the increased overall pressure has therapeutic value when treating decompression sickness), it's the main one, and the one which most of the various explanations of HBOT as an autism treatment hinge upon. Specifically, increased partial pressure is increased effective in-lung exposure to oxygen, and this is supposed to increase oxygen content in the bloodstream, increase oxygen flow to the brain, etc., etc.

Oxygen qualifies as a drug when used this way. As with vitamins, it's quite possible to overdose on it. This is known by a variety of names, but the most common of these are "oxygen toxicity" (for the phenomenon) and "oxygen poisoning" (for the medical condition).

Frankly, oxygen poisoning can be nasty. At lower levels, oxygen is a very good thing. At higher levels... it isn't. In fact, oxygen has neurotoxic properties at high enough doses, and these doses are acheivable even without a hyperbaric chamber.

So, if that's the case, why is it that that we don't see autistic children vomitting, suffering from tunnel vision and shortness of breath, convulsing, twitching, and generally showing the symptoms of oxygen poisoning after HBOT? The answer is actually rather simple -- and says a lot about the people peddling HBOT for autism.

The partial pressure of a gas within a mixture is equal to the percentage of the mix formed of that gas times the total pressure of the gas. So, for instance, the partial pressure of oxygen in a gas mixture which contains 20% oxygen and is held at 1 bar (normal atmospheric pressure) is .2 bar. Doubling either the percentage of gas or the overall pressure of the mix will also double the partial pressure of oxygen, yielding a partial pressure of .4 bar.

It's worth noting that a partial pressure of up to about one bar (depending on altitude, weather patterns, and just about anything else that effects atmospheric pressure) is achievable without pressurization -- 1 bar is the partial pressure of oxygen in a pure oxygen "mix" at normal atmospheric pressure. Keep that in mind as I continue.

A recent paper, using fairly typical practice for HBOT treatment for autism, used a 24% oxygen mix at 1.3 bar of pressure. Doing the math, this yields a partial pressure of about .31 bar... or roughly equivalent to what could be acheived by using a 31% oxygen mix without the hyperbaric chamber. It's actually pretty trivial to go to a SCUBA supply shop and buy a tank full of a mix that's richer in oxygen than that.

Of course, typical air is roughly 21% oxygen, meaning that the gas they used was only trivially different from room air in terms of oxygen content; the increase in partial pressure was almost entirely achieved by a raise in pressure.

While this sort of level is typical in practice, however, it's worth noting that I've seen documentation of much more "intense" regimens, ranging up to 100% oxygen at 1.5 bar. Caveat emptor -- and beware oxygen poisoning.

Finally, I suppose I should also mention that there's a second theorized action mechanism, involving gas transport via blood plasma (as opposed to the hemogloboin-based transport of red blood cells), which is increased substantially under hyperbaric conditions. This mechanism is equally implausible for reasons which are much harder to explain, but I should probably mention it in the interest of fairness.

Still -- 1.3 bar isn't enough pressure to make much of a difference there, either.

A Quick Note On The H1N1 Shot

I just got my H1N1 shot. I don't feel any more autistic.

That is all.

A Brief Note

Two of the most accomplished autistics in the world discuss their histories here.

Note the common threads between how they were taught and educated.

According to many notable "authorities" on autism, this is precisely the wrong approach to take. I find this fact to be extremely interesting -- and not in a good way.

Some Recent Advocacy Efforts

Fellow bloggers Kim Wombles, Thelma, and Louise have started an effort to form a new autism organization, one which actually looks pretty good... if still young. I hold out great hopes for their efforts.

Edit: I somehow managed to miss Kathleen's involvement with the project. She deserves a mention as well. Again -- good luck!

At the same time, the anti-disease group PKIDs has released a pretty spectacular set of videos on the horrific costs that the decision not to vaccinate can impose on families. Sullivan of LBRB has blogged on them here, complete with embedded video.

In his post, however, Sullivan wrote the following:

For any who wish to comment that this has nothing to do with autism, I agree. Unfortunately, the autism community is one of the biggest sources of misinformation about vaccines and vaccine preventable diseases. If I can help PKIDs a bit with this post, I see that as a good thing.

I have to somewhat disagree. Ideally, he is right -- this shouldn't have anything to do with autism. His comment that the autism community is one of the biggest sources of misinformation about vaccines and vaccine preventable illnesses, however, hits the nail on the head.

The instant vaccines entered the autism discussion, the two became connected. Despite the fact that the connection is purely artificial, a product of quackery and delusion, it is very real... and very horrifying.

Watch those videos. I'm particularly fond of the Hib, Hepatitis, and pneumococcal disease videos, but the others are generally pretty good as well.

This is what groups like DAN and Generation Rescue are telling people to risk rather than accept a percieved risk of having their kids turn out like us. This is what they are telling people is better than autism when they advise parents not to vaccinate their children.

Frankly, I find that phenominally insulting.

Edit: Corrected a typo ("However" was missing an e).

A Note on Free Information

Bad information is far more common than good on the Internet, especially in complex and often ambiguous fields such as medicine. This should not be a surprise to anyone -- while it takes a great deal of effort to assemble good information, bad information is far easier to put together.

As such, finding the good information -- via free services, anyway -- is often a matter of combing for a metaphorical needle in a haystack, and the information you find is often highly skewed in a variety of ways even when it is of decent quality.

I regularly read blogs maintained by doctors and researchers, for instance. While they provide news and often-educational commentary, their commentary on basic issues is usually provided on an ad hoc and incomplete manner as parts of explanations on other matters. This is fine if you already understand the basic issues involved, but if you're trying to educate yourself on issues surrounding the use of the P value in hypothesis testing, for instance, comments on what Study X did wrong will only take you so far.

This is particularly vexing when running a blog and attempting to provide references for the concepts in question. I try to write my articles in such a way that a naive reader can educate himself on the relevant issues with a minimum of fuss; as such, I often need a bit more than I can easily find in other blogs.

Because of this, it was an extremely pleasant surprise for me to find out that one of my favorite basic introductions to P values and the general nature of statistical hypothesis testing is available for free. I'd originally gotten access to it through my university, so I didn't realize at first, but this really has renewed my awareness of the free articles available on the Internet -- and the value of the available literature on how to interpret the literature.

In other words -- I'm happy about this, even if I'm far less so about the way my left knee's acting up. Joint instability is not fun.

On Exhaustion

Over the last month or so, I have been pushing myself pretty hard on the social/political/advocacy front, mostly trying to fight a battle that I'm utterly unsuited for. This has left me rather thoroughly exhausted, emotionally speaking, and my blogging has suffered for it.

I'm sorry about that.

On the other hand, I can't allow peddlers of pseudoscientific medicine endanger children -- and especially not the children who have entrusted to my care. That sort of thing takes priority over blogging, no matter how exhausted my efforts leave me.

I also attended a colloquium presented by a very prestegious behavior analyst yesterday. Specifically, he was presenting research which attempted to determine whether conditioning research (originally done on pigeons) would apply to the use of FCT to reduce problem behavior in children.

The people implimenting the program weren't even blinded to the specific experimental hypothesis. Gyah. When the entire experimental response is explainable entirely by expectency effects, you know you have poor internal validity...

About Me

As part of the process of applying to Ph.D. programs, I've had to write a statement of purpose. What I wound up with was an unusually frank declaration of parts of my history that I don't normally talk about and of who I am today. It is perhaps longer than I'd originally intended, but that's fine by me.

I debated posting it here. Beyond simply being long and highly personal, parts are probably overly technical for a blog post. As such, I've reached a compromise of sorts and edited out two paragraphs, both of which are technical descriptions of past research projects.

In any case, the edited version is as follows:

My love of psychology started in the summer of 2002. At the time, I was a hopelessly naïve undergrad with all of the self-education and executive functioning skills that they teach you in a public school program for the emotionally handicapped. I was studying computer science even though I was quickly coming to understand that I wasn't terribly suited for the discipline and was overwhelmed by unfamiliar academic demands. In an attempt to find an easy class to bolster my GPA, I decided to sign up for an introductory psychology class.

It was a decision which changed my life.

For the first time, things which other people said and did – things which I'd never truly understood – started to make sense. Other people started to make sense, not because of projective heuristics which had never worked for me ("Put yourself in their shoes!"), but rather because of scientific theories laid out in a manner that I could actually understand. It took me a while to fully abandon my childhood dream of becoming a computer programmer, but once I did, I never regretted it.

Of course, this doesn't mean that everything was perfect. I found the scientific study of human nature to be endlessly fascinating, but it didn't exactly take me long to realize that many of the theories and rules I was studying simply didn't apply to me. My memory shows little to no primacy effect (and a very strong recency effect), my cognition tends toward algorithmic rather than heuristic processes, my sensory thresholds tested as far lower than those of any of my classmates… the list goes on and on.

In other words, it really drove home the fact that I was different, and that these differences from my peers were anything but minor. I even had a name for these differences: "Asperger's Syndrome".

When I'd first received the diagnosis, it had seemed like just another diagnostic label in a long series of often-inappropriate labels attached to me by psychiatrists. It was then that I started to realize that it was something more.

Throughout this, I continued to take every psychology class I could. My love of understanding, of knowledge, and of psychology was one of the few things that was constant during this time. It remains constant to this day – I am never quite so happy as I am when learning new things about my discipline of choice. I also came to enjoy cultural anthropology and scientific sociological approaches to small group dynamics, two disciplines whose overlap with psychology is rather difficult to deny.

At the same time, I began to seriously develop my ability to critically evaluate the scientific literature. I became interested in individual studies rather than books, I started to realize the gaps in our knowledge (although this process would continue to develop for a long time), and I started to seriously consider what I wanted to do with my knowledge.

Still hopelessly naïve and buying hook, line, and sinker into the oft-repeated clinical rhetoric that Asperger's was distinct from "proper" autism and was a more "mild" form, I started to both over-complicate and oversimplify things in my head. Desperately trying to understand how I was different from my peers, I sought to understand autism, figuring that the best approach to understanding answering this would be to understand the differences between the "autistic" and the "normal" groups, with myself being somewhere between the two. A number of details about my neurology and the way my brain works somehow got lost in the mix.

I felt that the best way to understand myself would be to come to understand the differences between an autistic mind and a non-autistic mind. To do this, I believed that the best place to start would be to run a series of external validity studies on the more noteworthy studies on non-autistic psychology, starting with Kahneman and Tversky's classic heuristics and biases studies. This would produce a baseline of sorts – not only of the areas in which differences could be found and targeted for further investigation, but also of those areas in which autistic and non-autistic processes were similar or the same.

Much to my disappointment, I soon found that while such studies had been done on occasion (e.g. De Martino et al.'s 2008 paper on framing effects), they'd been done only in a piecemeal and ad hoc fashion, and were often interpreted through a biased framework. I wanted to rectify that.

By this time, I had graduated and decided to spend some time getting clinical experience, both to shore up weaknesses in my understanding and to learn about autism-related clinical practice. At the same time, I used the time I was no longer spending reading coursework-related materials to focus more on reading about autism and related topics.

It took a while, but I came to understand just how naïve I had been. Tracing a number of the claims that I had taken for granted back to their origin, I soon discovered that many of them were based on shaky evidence – or were simply made up in a number of cases. I discovered that many of the researchers whose conclusions I'd previously accepted had little to no empirical basis for their statements, and that even the DSM description of autism had some pretty serious issues (e.g. the assertion that most autistic individuals are mentally retarded; see Edelson, 2006 for review and discussion).

I saw the state of the modern autism clinical community. I met children who'd been restrained and secluded by schools that didn't know how to deal with them. I saw intelligent, loving children drugged into a stupor by their clueless and frustrated parents. I met teenagers who had suffered even worse bullying than I had been in my own childhood. I met desperate parents who, not understanding scientific medicine, took pseudoscientific treatment approaches that endangered their beloved, if misunderstood, child's life. I read absurdly dehumanizing books about people on the spectrum, some even going so far as to dismiss the idea that we could have any sort of innate claim to humanity (e.g. Barnbaum's The Ethics of Autism).

I also both met and read the writings of "properly" autistic adults who were and are very much like me, facing many of the issues that complicate my life. I found others like me, and a community of people who both understood and accepted me. Bit by bit, my naïveté was stripped away.

It was in the middle of doing this that I, in an attempt to learn more about psychology and to attain clinical credentials useful in the world of autism, applied to Nova Southeastern University's postgraduate applied behavior analysis program. I learned about the early history of behaviorism, about biases in research, about the practical consequences of woefully inadequate ethical codes which are drastically under-enforced, and far, far more.

I also learned about the utter cluelessness and spectacular naïveté of many of today's professionals. In one notable incident, I had to correct a classmate – who had been working in the field of autism services for years – on the statement that the vast majority of autistics were mentally retarded (and got fervent denials of my correction even after I cited the relevant reviews). In another, my class reacted with shocked horror when I pointed out just how a professional could manipulate a client's family to worsen the client's self-injury (and provided a plausible, if highly unethical, motive for doing so). The thought that a professional who would put financial gain before a client's welfare could exist was apparently shocking to them. There were countless other such incidents, some of which involved my teachers.

This isn't to say that everything was bad (and, in fact, this was far from the case). It is to say that I started to understand just how badly things needed – and still need – to change. What had started as a simple quest for self-understanding grew to be more, because understanding is needed to produce that change. The practical consequences of ignorance are too great to ignore.

And, accordingly, I came full circle. I still want to conduct the external validity experiments I'd originally intended to, but I've come to understand that the importance of them – and of other, similar research – extends far beyond the realm of academic understanding and my personal quest for knowledge.

The fact that gaining that knowledge involves doing what I love and exercising my strengths is just icing on the metaphorical cake.

A Little Gem

I came across the following quote while reading Snodgrass, 1992 as part of my research into quackery:

Methylation of mercury compounds increases their ability to enter the CNS and
also prolongs their stay in the body. Since mercuric ions can be biomethylated
by cobalamins, persons taking large doses of folate and B12 may be more likely
to be harmed by mercury should they contact it. (p. 51-52)

The irony here is pretty spectacular.

Reference:

Snodgrass, S. R. (1992). Vitamin neurotoxicity. Molecular Neurobiology, 6, 41-73.

Why I haven't been posting that much lately

Around a week or two ago, I found out that this conference is to be held literally within walking distance of my house. To be blunt, it's a spectacular quack convention. Wakefield is keynoting (although the "keynote" will be delivered at the end of the conference in a notable break from standard protocol). The list of presenters is practically a "who's who" of the quack community, and the conference is to be held by one of the major national anti-vaccination organizations.

I am thoroughly disgusted by this and am presently trying to organize a protest. Unfortunately, this leaves me with limited time (and energy) to blog.

Relevant support -- from anyone who can provide it -- would be greatly appreciated.

Reasons Why The Autistic Community Should Fight The Anti-Vaccination Quacks -- A Working Document

This is the working document for a future entry. The items below are not in any particular order (I plan to do a countdown, listing them in ascending order of importance and descending number), and the below is not a complete list. I am more than open to suggestions and I will add links and references when I finally get around to posting the final document.


1. "Don't vaccinate your children because vaccines cause autism" demonizes autism, portrays autistics as "damaged goods", and contributes immensely to psychosocial stigma.

2. It's the right thing to do.

3. "Vaccines cause autism" is wrong -- in the sense of "incorrect". We have enough junk science in the field of autism even without the vaccine causation hypothesis.

4. The vaccine/mercury causation hypothesis is the nominal basis for a number of harmful quack treatments, such as chelation and the Lupron protocol.

5. Allies against the anti-vaccination quacks are generally highly motivated, skeptical, highly intelligent, and/or well-placed to help us fight other forms of quackery. The foot-in-the-door phenomenon applies, and the alliances formed accordingly can be used to our political advantage.
6. We can make a difference in the fight.

7. Sitting back and allowing one form of quackery to go unfought leaves the door open to others.

8. The anti-vaccination movement kills people. As the anti-vax movement targets the families of autistic children, this often means that it's us or our families who get sick and die.

9. Killing or recklessly endangering other people in the name of preventing people like us from existing is most certainly not acceptable.

10. Anti-vaxxers guilt-trip the families of autistic children over vaccinating their autistic child. This can have tragic consequences for autistic people.

11. The anti-vaccination crowd often acts as a concerted mob, bullying and acting to exclude people who disagree with them (and especially those on the spectrum who do so). This greatly adds to the difficulties in having reasoned discourse between autistic individuals and parents, and contributes to our exclusion from the discussion about autism. (Thanks to Kim Wombles)

On Attitudes

I don't think any regular readers of this blog will be terribly surprised to hear that the sort of attitudes they take and encourage their members to take is one of the things that most continuously frustrates me about the various parents' groups in the autism community.

It is worthwhile, however, to once and a while contemplate just what a healthy attitude is. It's also worthwhile to acknowledge that organizations dedicated to other disabilities often get it right.

I was recently reminded of this by a series of ads by United Cerebral Palsy. Some of them were especially classic.

These aren't all recent, of course, but they do help to illustrate what a healthy attitude towards a disability consists of. Now if only the autism organizations would start to follow UCP's lead...

Vaccination Quackery Revisited

The following is adapted from an e-mail I recently sent. The response I got was... "interesting".

I am a scientist by training. When asked scientific questions, I tend to answer them as a scientist. Scientific questions, like the question of whether vaccines cause autism, are not about belief. They are about evidence and facts -- and the fact is that the courses of action suggested by the anti-vaccination movement kill people. Worse, the advice and propoganda in question kill people, and not only the people who take it. This is why I take the time to study something before I comment on it or talk about it. I'm aware that bad advice and bad information kills.


I am not joking about this. I consider this sort of thing to be a (literally) deadly serious matter. I also don't make unqualified or categorical statements in this sort of matter without a lot of very strong evidence.


England has recently seen a resurgance of measels, resuling in considerable suffering and death. Australia has seen a tragic pertussis outbreak. A very large number of illnesses and deaths here in the US can be directly attributed to vaccination refusal. This is without breaking herd immunity -- and the thought of that happening (what happened in a small segment of Australia), frankly, scares me.


In addition to this, this sort of thing creates and exacerbates the problem of what are known as nocebo and harmful observer-expectency effects. To give you an illustration of how powerful nocebo effects can be, chemotherapy trials have been known to cause the control group (who are not recieving real drugs) to lose hair, start vomitting, and generally suffer all of the negative side-effects of chemotherapy... despite having only been given a saline drip.


This happens purely because said controls expect it to. It's not an effect of the drug, which they haven't been given.


Now, if this can happen with a saline drip (which is about as harmless as it gets), just what makes people think vaccines are immune from this? Things get worse when harmful observer-expectancy effects are factored in. Expectancy effects have killed people.


Of course, all of the above consequences could be forgiven if there were a legitimate danger the anti-vaccination groups were warning against. Leaving aside just how insulting the "don't vaccinate your kids because vaccines cause autism" rhetoric is (and how, exactly, do you think it makes autistic individuals feel when they see parents going on national television and advising other parents to risk both their children's lives and the lives of other people's children rather than risk having a child like them?), there is also the matter of the truth of these claims, which are pretty much universally bunk.


To provide an illustration of just how bad it is, the e-mail which provoked the original version of the above linked me to this website. I didn't have time (or the stomach) to go through and debunk everything said there, but I did provide an example to give her some idea of just how bad its information is.


The site's first citation to "prove" that flu shots are dangerous (and thereby presumably the one they regard as "best") is a paper by Mark and David Geier, which was published in 2003 in the Journal of American Physicians and Surgeons.


The authors of that study are infamous quacks who are guilty of academic fraud and who make their living by chemically castrating children. The "journal" it was published in is an infamous hotbed of quackery which, among other things, has published politically-motivated articles claiming that abortion causes breast cancer and that shaking your baby is safe (and that shaken-baby syndrome doesn't exist), racist articles with utterly absurd claims about illegal immigrants (e.g. this one), and articles condemning both the practice of science-based medicine (e.g. this one) and peer-review (e.g. this one).


And this is without going into the methodological quality of the article (poor) or any of the scientific tactics I'd use to demonstrate that the article was utterly, totally meaningless.


That is just one example. Think about it.

On "Restricted and Repetitive" interests

Everyone has their hobbies, their interests, and their experiences. These, of course, vary... but their usually is a pattern to them.


And no, I'm not referring to the relationship to one's life story. If that's incorporated, there's always a pattern to them.

This isn't to say, mind, that the pattern is always the same... or even of the same type. Every person has their own pattern of interests.

This pattern says a lot about that person, too... but this isn't really the forum for a discussion of that.


Perhaps more importantly, there's a relationship between components of this pattern. My interest in Japanese langugage, for instance, is strongly related to my interest in Japanese culture. This, in turn, is a portion of my interest in cultural anthropology. My interest in cultural anthropology is a minor focus area within my interest in the scientific study of people. To be more specific, that particular interest extends across psychology, microsociology, and cultural anthropology. How my interests in psychopharmacology and experimental methodology tie into this should be pretty obvious.


The thing is, autistic interests tend to follow generally different patterns than neurotypical interests. The connections (and definitions!) of autistic interests tend to be different as well.


To me, there's an infinite variety in the peer-reviewed literature. By reading through it, I can learn about endless topics, find out all sorts of really neat things... it's like an infinite and ever-expanding cornucopia of knowledge about whatever obscure topic I might want to learn about. I can get lost within that for hours, days... or even weeks.

To someone else, it probably looks like I'm just reading all the time -- a "restricted" and "repetitive" interest. But... what of the main activity of many biblical scholars? What do you call it when they not only read all the time, but read the same book? Similar things can be said of most, if not all, autistic perseverations.

To put it another way, both the degree to which something is "restricted" and the degree to which it is "repetitive" are highly subjective.

Of course, this isn't to say that an unusual pattern of interests doesn't come with its fair share of disadvantages. For instance, someone who loves sports can always find someone to chat with about the latest Cubs game (or whatever). Someone who loves romance novels can usually find someone to ask if they've read any good books lately.

Now... imagine the stares I'd get if I were to just casually ask someone, "Read any good methodology papers lately?"

That is, in my opinion, the largest problem with having a "restricted and repetitive" set of interests.

Megavitamin Stupidity, Part Two

As I observed in a previous post, people tend to think of the effects of having not enough of a vitamin, but tend to ignore the effects of having too much. As such, I've compiled a list of some of the known effects of the latter. This is not intended to be a comprehensive list or anything -- just a simple list of some of the health hazards of having too much of a vitamin in your system. It's not even a full list of the effects of every vitamin, just the few that were easiest to find data on. As I note below, my research methods for this were not anything special.

It's also worth noting that there are differences between chronic and acute vitamin toxicity. Acute toxicity generally requires a higher dose of the vitamin in question, while chronic effects occur from a lower dose over a longer period of time. Both can present substantial health risks.

Finally, parenteral administration is generally more dangerous than oral. There are a number of safeguards that normally prevent the body from absorbing a massive overdose of certain vitamins that don't necessarily apply to "vitamin shots" (thiamine comes to mind here).

My research strategy was hardly anything to write home about -- I went down to NSU's medical library and checked out a textbook. This isn't information that's hard to come by... unless you're trying to get it from the various fad "health gurus", from DAN doctors, or from other, similar sources.

So, without further ado...

• An overabundance of vitamin A is associated with hair loss, ataxia, bone and muscle pain, cheilitis, conjunctivitis, headache, liver damage, hyperlipemia, hyperostosis, membrane dryness, itching, pseudotumor cerebri, various skin disorders, and visual impairment. Vitamin A also acts as a teratogen, but this usually isn't relevant to the use of DAN-reccommended megavitamin supplements (i.e. I've never heard of a DAN protocol being used to treat a pregnant woman).
• Vitamin D poisoning can result in hypercalcemia, hypercalciuria, anorexia, nausea, vomitting, thirst, polyuria, muscular weakness, joint pains, diffuse demineralization of bones, disorientation, and irreversable calcification of the heart, lungs, kidneys, and other soft tissues. The vast majority of the death-by-vitamin-overdose case reports I've read (which may or may not be a representative sample) have been due to hypervitaminosis D.
• Vitamin B3 overdose effects depend on the specific form of the vitamin involved. Nicotinic acid toxicity is associated with vasodilation, burning or stinging sensations in the face and hands, nausea, vomiting, diarrhea, hyperpigmentation of the skin, abnormal glucose tolerance, hyperuricemia, peptic ulcers, hepatomegaly, and jaundice. Nicotinamide overdose has been known to cause liver damage and may cause cancer (further research was required according to the textbook I read, which was published in 2001. I have not conducted a search for more recent information).
• Chronic overdose of Vitamin B6 has been associated with neuropathy (motor, sensory, and peripheral), vesicular dermatosis, loss of reflexes, impaired touch sensation in limbs, dizziness, nausea, breast discomfort or tenderness, and photosensitivity.

This is nowhere near a complete list, even from within the sole book which served as my reference. Think on that.

Reference:

Rucker, R., Suttie, J., McCormick, D., & Machlin, L. (Eds.). (2001). Handbook of Vitamins (3rd Ed., Revised and Expanded). New York, NY: Marcel Dekker, Inc.

A Brief Comment on Experimental Design

In a hilarious demonstration of why proper experimental design (and specifically data analysis) is so important, researchers managed to "show" (in a recent conference poster) that a dead salmon responds to human emotion.

Obviously, there was no such thing actually going on.

The correct conclusion? That if a study isn't properly designed (and I include analysis as part of the design), it's quite possible for it to find effects that aren't really there.

We see this sort of thing all the time in the field of autism research... and no small part of it is due to groups like DAN. Gyah.

Megavitamin Stupidity, Part One

The principle of homeostasis is one of the most basic in medicine. My experience with parents of autistic children has been that they don't understand this.

Oh, don't get me wrong -- it's not their fault. It's hardly reasonable to expect every parent of an autistic child to have an understanding of it.

To expect at least most them to have heard about it, yes -- it's covered in most high-school biology courses (or it's supposed to be). Understanding, however... let's just say that American high schools often fail in their goal of promoting understanding of the subjects they're supposed to teach.

In essence, however, the principle states that organisms exist in a state of balance, maintained by a series of feedback mechanisms. Too little of something important can be bad -- but so can too much of the same thing. While the relationship between insulin and blood sugar is perhaps the most common example of this referenced in a purely medical context in popular culture (mostly because of the conditions of hyperinsulinemic hypoglycemia and diabetes, each of which is defined by the a type of breakdown of this balance), there are countless others.

So -- why is this important for understanding the problems with megavitamins?

Well, the principle of homeostasis accounts for why the same thing can have radically different effects depending on how much of it is involved... or, for that matter, why extremely low amounts of it and extremely high levels of it can have the same or similar effects.

It's all about the dosing... which is where the problem comes in.

Vitamins, like all other chemicals (and yes, vitamins are chemicals -- get over it), are subject to this. Simply put, it's quite possible to overdose on them.

I have heard -- anecdotally -- mentions of a child overdosing on Vitamin C from drinking too much orange juice... but most of the stories I hear of involve supplementation.

No, not megavitamin supplementation, either. I'm talking about regular, normal, over-the-counter dietary supplements. There's a very good reason why modern multivitamins are really, really careful about their iron content, for instance (although that's technically a mineral, not a vitamin).

Vitamins are one of the classic cases of "a little medical knowledge is worse than none" -- and, as I write this, I'm visualizing an exchange:


"But it's good for you!"


"Yeah, well, it's good for you to have enough... too much and it becomes a poison. Homeostasis and all."


Anyway, the point of all of this (beyond general medical education) is pretty simple -- as with all drugs, it's quite possible to overdose on vitamins.


And yes, vitamins, when taken as suplements (at least -- their status as such when consumed in food is more debatable), are drugs.

There's even a medical term for this -- it's called "hypervitaminosis".

So, in short -- people always tell you about the health benefits of vitamins. They don't tell you about the hazards thereof. Going overboard is stupid and can risk serious health problems.

QED.

Next time, I'll detail exactly what happens with overdoses of certain vitamins. I think my readers will be unpleasantly surprised.

"I Am Autism"

Autism Speaks's latest video, "I Am Autism", is the single most offensive thing I've ever seen.

I'm not going to get into the issue of Autism Speaks's history of excluding autistic people, its repeated patronization of us, its... well, you get the idea. I'm just going to confine myself to the video.

I will, however, comment that I think this despite the fact that I grew up in the South Florida Jewish community and have read Mein Kampf in its entirety. I am also quite familiar with the Protocols of the Elders of Zion and have seen a translated brochure for Stalin World. During high school, I made something of a study of Soviet propaganda. Keep this in mind when I say that "I Am Autism" is the most offensive thing I've ever seen. It's that bad.

As I've tried to explain before, you cannot separate autism from autistic individuals. Anything said about autism is said about autistic people. Anything said about autism on a demographic level is said about the existence of us as a group; anything said about autism in a child is said about that child.

The following is, other than some changes in number (I changed a few uses of "I" to "we" for gramatical reasons) identical in meaning to the video. Hopefully, it will make just why the autistic community is so outraged a bit more apparent to anyone reading it:

(In sinister tones)

I am the existence of autistic people.

I am visible among your children, but I am invisible to you until it is too late.

I know where you live -- and guess what? I live there, too.

I hover around all of you. I know no color barrier, no religion, no morality, no currency. I speak your language fluently, and with every voice I take away, I acquire yet another language.

I work very quickly. The existence of autistic people works faster than pediatric AIDS, cancer, and diabetes combined.

And, if you're happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain.

I don't sleep, so I'll make sure you don't, either.

Having an autistic child will make it virtually impossible for your family to easily attend a temple, a birthday party, a public park, without a struggle, without embarassment, without pain.

You have no cure for me. Your scientists don't have the resources, and autistic people relish their desperation.

Your neighbors are happier to pretend that I don't exist. Of course, until it's their child who's autistic.

We are autistic people. We have no interest in right or wrong. We derive great pleasure out of your loneliness; we will fight to take away your hope. We will plot to rob you of your children and your dreams. We will make sure that every day you wake up, you will cry, wondering "Who will take care of my child after I die?"

And the truth is, we are still winning and you are scared, and you should be.

I am the existence of autistic people. You ignored me. That was a mistake.

And that's the first half. To try and translate the second, I'd need to change the semantics a bit more. Suffice it to say that it's a determined statement that people are getting together to rip their actual child out of the "shell" that we are.

In other words, it's based on the implicit philosophy that we're not real people and that they need to make us into real people.

Gyah.

Edit: Katie Miller did a brilliant parody of the video here. I'm still laughing.

Another Recent E-mail

On a note related to my previous entry, the following is the full (minus the addressing line) of a previous e-mail in the same conversation as the last one.

Thank you for your support.

It's worth noting that one of my introductory posts mentioned both that I've recently completed the postgraduate coursework for BCBA certification and that I perseverate on research... in addition to the fact that I am seeking additional (supervised) clinical experience.

The first and last of these should have indicated pretty firmly that I do not believe that seeking help for your children is inappropriate, as some of those on the list seem to think I do. If this were the case, I would neither have taken the time to gain credentials related to providing this help nor sought a job that involved providing it.

The first two, on the other hand... I am uncertain as to how to phrase this politely, but...

There are over 1,500 people on this list. Many, if not most, of them are parents of autistic children. Of that number, only one person has thought to write me off-list regarding anything I've said on it (excluding my statement that I was seeking work -- if that is included, the number increases to two). No one has thought to ask me about research studies (which I read for fun and have extensive knowledge of). No one has even thought to ask me to reccommend articles, studies, or references -- on list or off. This is despite the fact that autistic individuals almost inevitably acquire a tremendous amount of detailed knowledge of the subjects of their perseveration. Many, if not all, of you have extensive experience with this phenomenon.

What's more, we almost always enjoy talking about the subjects of our perseverations. Again, many, if not all, of you have extensive experience with this phenomenon. I assure you that I am no exception on this count... and would go so far as to say that I'm near-starving for intelligent discussion of the research (in large part since I can't afford to go to conferences all that often). I only know one other
individual on the spectrum who actively perseverates on research and is at anything approaching my educational level (in fact, I consider her to be considerably above it despite the fact that she has less formal education than me). I always look forward to and enjoy our interactions -- despite the fact that they seem to almost inevitably break down into a series of misunderstandings -- because I always learn a tremendous amount from them.

Additionally, the nature and frequency of my responses should have been a pretty substantial indicator of my willingness to respond to that sort of thing. I have even made explicit offers to provide information or to elaborate on points. I cannot recall anyone taking me up on any of these offers.

I'm aware that there are other factors potentially involved (a desire not to impose on me, for instance), but... over 1,500 people. Even if half of that number was composed of service providers, that would still be 750 parents.

So, for the part that I'm not really sure how to phrase politely -- just what sort of impression do you think I get from these facts?

In addition, every post I've made has included a link to my blog. Many of the posts there are aimed at helping parents at some form or another. Many of them talk about things that I've mentioned only briefly on this list.

I have not, to date, recieved a single comment on any of them from anyone who arrived there by following this link. I also have the ability to make this statement.

Actually, I'd go so far as to say that I haven't recieved any indication that anyone here has even followed that link except for the one person who thought to write me off-list regarding something I'd said on it... who mentioned having done so in a private e-mail.

What sort of impression do you think that makes?

I'm bringing this up because, apparently, many on this list have accused me of not attempting to (or being unable to) take another's point of view or to empathize with another's positions. In fact, this is one of many largely unfounded autism stereotypes... and, if it is true in this case, it most certainly is not unique to my side of things. The above example was, frankly, the gentlest and least potentially controversial way I could think of to point that out. There are many, far harsher and more critical, ways I could have chosen.

This way also had the advantage of pointing out a resource that some of you may have missed.

A Recent E-mail

The following is from a recent e-mail sent in response to an accusation that I lacked empathy after my attempts to explain that anti-autism hate speech is offensive to several curebie parents. I've modified it somewhat (taking out an introductory dependant clause in the first paragraph and removing a parenthetical reference to another list-member) to better fit the format of this blog and to respect the privacy of the individuals involved, respectively.

It's not so much that I'm oblivious to the idea that my words may cause pain as that I view that pain as unavoidable. "Autism" is a description of a set of neurological and psychological differences -- differences in the way our brains work when compared to yours. Setting aside the question of whether or not those differences are deficit-driven and/or pathological, how exactly do you think it makes us feel when our parents say that they hate the way we think and view the world? That is what autism is.

"Love the child, hate the autism" is impossible. You cannot separate the way someone's brain works -- the way they think, the way the feel, the way they remember things, the way they view the world, all of which are described by the reification we call autism -- from who they are.

What's more, children grow up... and an autistic twenty-five-year-old is a very, very different creature from an autistic five-year-old. When your children grow up and view these conversations, how do you think they'll feel, given what I described above? Leaving aside the question of whether or not vaccines "cause autism", how do you think that your children will feel when they see you advising people to risk their child dying rather than growing up to be like them? Is that not saying that a life like theirs is worse than death? How do you think any child would feel, growing up to read their mother's public and published accounts of how raising them was a "nightmare"? We've lived through that.

This, not merely the quackery (although that is awful), is the worst aspect of the whole DAN-and-Generation Rescue phenomenon... and I sincerely doubt that anyone on this list wants their child to go through this sort of pain.

I am painfully aware of what this sort of thing does to a person. I have had the unfortunate experience of seeing people go through this. It is not pleasant. This is a major understatement.

So -- when given the choice of trying to prevent this, and causing pain to parents as they mourn the loss of a "normal" child who was never born, or staying quiet and watching as countless children grow up to experience the same unspeakable heartache that countless friends of ours have lived through... what would you do? When confronted with the memory of someone's tear-filled face as they ask why their (loving, but misguided) parents hate them, what would you do?

(For the record, the last question above is the result of my attempt to translate some of my own experiences into neurotypical terms. Distraught expressions play a role in neurotypical cognition that they do not in most autistics' emotional processes. I've never physically been there when asked that question... but that doesn't matter to me; the emotions would have been exactly the same.)

On Science Fiction and Identity, Part One

What is it that makes us who we are?

Really -- it's an important question. Philosophers have been debating this for milennia... in large part because they've realized just how inportant it is. It's not a simple question. It's not an easy question. It's not a question that we have a definitive answer for.

Tackling this question involves grappling with the deepest aspects of philosophy, to struggle with the essence of humanity, and to seek answers that may not even exist.

It's also not a question that science can answer. Sure, science can inform the debate -- I've long since lost count of the number of studies I've seen on issues related to this -- but it's fundamentally a philosophical question, not a scientific one.

Today we have three major groups exploring this issue, all from different angles and all producing different sorts of results. The first two -- philosophers and scientists -- are pretty obvious. The third category -- science fiction authors (some fantasy authors do this, too, but let's not get too deep into the issue of the blur between the genres) -- are a pretty uniquely modern phenomenon, but have been quietly (or, occasionally, not so quietly) exploring a number of complex philosophical issues in the background of our culture for quite a while now. Many of these explorations have to do with issues of identity and humanity.

They've even been doing it in a manner that's a lot more accessable to the "average joe" than most philosophical treatises.

I'm not saying that a Star Trek episode is as important in the grand scheme of things as a major philosophical treatise, mind. I'm just saying that they often explore the same issues, albeit from different angles.

It's rather akin to how the ancient Greek morality plays explored the philosophy of ethics, really.
I'm also not saying that every science fiction story qualifies. Many don't.

The fundamental question explored by science fiction, however, is "What if?" It is from this angle that science fiction authors address the question of what makes us who we are.

While a philosopher explores issues of what makes us who we are, he does so through careful argument and discourse. When a scientist does so, he seeks factual answers and reasons based on emperical evidence. When a science fiction author does so, he sets up a scenario and shows the (hypothetical) consequences.

The products of this sort of exercise vary from beloved classics to pieces of pop culture. They have been known to lead to some pretty interesting (if obscure) philosophical debates between fans... and have a considerably higher "geek appeal" factor than Descartes.

Sorry, Rene, but your work just doesn't have what it takes to be debated by Vulcan-eared Trekkies at a geek convention. Roddenberry has you beat on that count... and no, I don't use "geek" as an insult. I've earned my geek stripes, thank you very much.

And, of course, all of this begs the question -- why am I bringing this up on an autism blog?

Well, I plan to indulge my inner geek when I write about issues of identity and autism. I can't write purely serious science and philosophy pieces all the time, now can I?

Answering Machines

I hate answering machines. I really, really do. I hate voicemail, too.

Okay, so I don't really hate mine. I can listen to messages someone else has left me just fine.

I just have trouble leaving messages.

And yes, this can act as a barrier to employment -- I get incredibly awkward when trying to leave someone a message... and three guesses what that does to the impression my message leaves a potential employer with?

On the More Subtle Forms of Discrimination

Ever since I completed my last practicum, I've been job-hunting. Not only do I need income, but I need additional supervision time before I can sit the BCABA exam.

I've done the full coursework for the BCBA exam, but I need to get a Master's before I can sit that one. The need for additional supervision is just part of that.

Anyway, that last part means that I need to find employment in a fairly narrow field. I'm not particularly picky about the broader type of program I'll work in, but I am picky about ethics. Frankly, I believe that the code of professional conduct that the BACB enforces is absurdly insufficient (and insufficiently enforced, but that's another matter). I've already had to throw out several of the opportunities that I've found because of this. I categorically refuse to implement a program that involves restraint or seclusion, for instance.

One of the big obstacles towards me finding work in the field, however, is that I don't know who's hiring. Online listings haven't been much help here, either.

Normally, social networking strategies make finding a job -- or at least finding who's hiring -- under such circumstances fairly easy. I am spectacularly bad at them... and saying so is a massive understatement.

In as far as this is inseparable from the fact that I am autistic (let's not go into the chicken-and-egg mess that a discussion of causal attribution here would get into), this problem could be viewed as the result of a form of statistical discrimination. Personally, I just view it as an annoyance and another one of life's many challenges.


Another example of this sort of thing that I've run across has been in the realm of employment applications. Since college, I've accumulated what I like to think is a pretty good collection of professional references. My academic references aren't bad, either.

However... due to their nature (i.e. most of them are people I've worked with), I'm S.O.L. when a potential employer asks for non-family, non-professional references. Sure, I know people outside of work and family, but there aren't exactly that many who I would feel comfortable with asking something like that. It's a real dilemma, and not an easy one to solve (especially since I did two practicum semesters at my postgrad university, meaning that I've worked with most of my professors).

And to think that this is supposed to be the easier set of references to get.

What's worse is that I know exactly why they want that sort of reference. It's hard to be upset with them for that.

That doesn't change the fact that it can easily be a major barrier to employment for an autistic individual.

Scary, scary figures

I recently came across this piece by the LA Times. Frankly, I'm scared. Epidemiology may not be my field, but this is far, far worse than I'd imagined.

The mathematics of mass vaccination are complicated, and the level of vaccination required to achieve herd immunity varies between illnesses (or even strains of the same illness), but I can't think of any illness where a vaccination rate of 13.5% is enough to provide such an effect. That is, admittedly, the most extreme example on the list, but I could say the same of a vaccination rate of 50%, which is much more common. Generally speaking, a vaccination rate of anywhere from 85% to 95% is required for herd immunity to provide any real protection.

They might have well posted this data as an article, and labelled it, "California kindergatens are fertile breeding grounds for some of the nastiest diseases circulating in the world today!"

I'm beginning to suspect that it'll take a genuine tragedy to stop Jenny and her brand of idiots. In the meantime, her kill count keeps rising... and, for every additional unvaccinated child, the scope of the inevitable tragedy, when it comes, grows.

As I said, I'm pretty thoroughly scared by this.

Dan Marino Autube Response

I recently did a recorded speech for the Dan Marino Foundation's Autube project. Overall, I'm pretty happy with the content of the speech, but... less so... about how it came out on the recording. I suppose that I still need work as a public speaker.

For what it's worth, the audio of my speech is available here. It was in response to Ari Ne'eman's question of what the largest issue is in autism education today. The full text of my speech was as follows:

Hi, I'm Alexander Cheezem, an adult on the autism spectrum and a member of
the self-advocacy community.

I must confess that when I heard that Ari would be introducing education as this month's topic, my first response was to inwardly groan and to think to myself, "Are there any controversies in autism that don't tie into education?" To be honest, I think that the answer to that is "no". Beyond simply the issues involved in educating autistic students, we must consider how we educate parents, professionals, and even the educators who will be teaching the students we're talking about educating... regardless of who those students might be. And then there's the issues of peer education, community education, and employer education, just to name a few, each of which comes with their own metaphorical can of worms.

Personally, I don't believe that these issues can really be separated. Each impacts and informs the others.

That said, it cannot be denied that some issues are more fundamental than others. For instance, many of the controversies in autism education today center around the issue of what the goal of educating autistic students is, and disagreements on that issue further complicate the subsequent debates. Until a consensus is reached on these issues, the clinical and special education communities will remain divided against themselves.

In turn, it is important to keep in mind the limitations of the methods we're talking about. While it's true that brain plasticity is a complex issue and educational methods can alter the brain in strange ways -- the cases of the hippocampi of London taxi drivers and the effect of prolonged blindfolding on the visual cortex being prime examples -- the underlying neurological differences that we refer to as "autism" are not fully understood and, in some cases, not even accepted as existing. The best evidence is, however, that no current educational intervention addresses them.

Or, put another way, it is not possible to make an autistic person quote-and-unquote normal through education. It may be possible to make an autistic person act like their neurologically typical peers, but it is my belief that insufficient scientific and ethical scrutiny has been given to the issues associated with this.

For instance, autistic people have a number of atypical strengths. A number of authors have explored these extensively in their work, much of which is published in peer-reviewed journals and largely ignored by the autism education establishment.

Additionally, many behaviors that seem "odd" to neurologically typical individuals serve or may serve important functions for persons of autistic neurology. Rocking, hand-flapping, and so-called "stereotyped" play styles come to mind, but there are others. Teachers also often want to quote-and-unquote teach behaviors which serve an adaptive function for typically-developing children but may be useless, stressful, painful, frightening, or otherwise maladaptive to an autistic child, such as pointing, eye contact, or quote-and-unquote appropriate gaze. It is my belief -- and the belief of many others -- that the ethics of these attempts need far more attention.

Moreover, value-laden and supposedly scientific judgements of what people "should" be have historically been prone to error. One of the more famous examples of this was the psychiatric diagnosis of drapetomania, popular in the mid-1800s, which pathologized the desire of slaves to free captivity. Other, more recent examples include left-handedness and homosexuality.

It's worth noting that all of these involved humiliating, painful, or otherwise harmful so-called "treatments". The suggested "cure" for drapetomania was whipping. "Treatment" for left-handedness often involved artifically disabling the left hand in order to force the victim to use his or her right hand in its place.

As for homosexuality, the less said about the so-called Feminine Boy Project, the better. Suffice it to say that at least one of its victims later attempted suicide... and that that is only one of many examples of the harm it caused that I could throw out. The Feminine Boy Project was, however, just one of many humiliating, harmful, and otherwise unethical attempts at treating the supposed mental disorder of homosexuality.

In short, even the idea of normalization runs across a number of ethical problems that have been largely ignored by the educational establishment.

Beyond those inherent in the idea of normalization for normalization's sake, however, there are larger ethical issues. For instance, is it approprate for our educational system -- as a subsidiary of our government -- to decide what is or isn't an acceptable aspect of our children's future identities? The ethical debates here are long and hard, but rarely applied to issues of autism.

Is it appropriate for any group to determine what is or isn't acceptable behavior or necessary knowledge for another group without that group's involvement?

My response to that one is to echo the central credo of the disability rights movement: "Nothing about us without us!"

And, of course, we then proceed to get into the tangle of issues that I mentioned at the beginning. Welcome to the wild and wonky world of autism -- where nothing is ever as simple as it seems. The tangles often give me headaches, and I deal with them every day of my life.

Another Example of Bias in Science and the News

I'll also have to admit that neuroscience isn't my area of expertise... or even an area of particular interest for me (beyond the subfield of cognitive neuroscience, which is of interest to me to the extent to which it provides useful evidence for theories in cognitive psychology). This isn't anything against the field -- I just don't personally enjoy reading these studies nearly as much as I do other sorts.

That taken care of, a recent MSNBC piece contains the following quote from an autism researcher whose name they didn't spell (but I very strongly suspect, based on my knowledge of autism researchers, the pronunciation given to the researcher's name, and his stated institutional affiliation to be Dr. Eric Courchesne -- please correct me if I'm mistaken):

We discovered that at birth the brain is near-normal in size, but by about twelve months of age the brain has grown too large, too fast, which suggests that mechanisms that regulate how the brain grows have been derailed in this disorder.

I pulled this specific quote because it's an excellent demonstration of a peculiar form of normocentric bias that pervades much of the autism world. There are a number of other problems with it, but for now I just want to focus on that one. It's worth noting that there are a number of other spectacularly problematic quotes in the piece, however.

I was going to go on a rather long rant about the subject, but then I realized that someone else had already done a pretty spectacular job of highlighting the problem. In essence, he's assuming that there's a single, "good" course of brain development (the one that most children show) and that all deviations from this course must be harmful. This is not the case.

Another case of "abnormal" growth that I can point to is in the hippocampi of London taxi drivers, a direct result (as far as we can tell) of the fact that they have to memorize a simply absurd amount of information regarding the layout of a pretty large and chaotic city... unless they navigate by GPS, and those that do don't show the "abnormal" growth I'm talking about.

Given the known functions of the hippocampus, this shouldn't be too surprising.

So I won't deny that the patterns of growth the doctor is talking about are interesting. I do think, however, that his interpretation is completely inaccurate and highly biased. If anything, I think the reports he's citing are evidence in support of the EPF model of autism... but we'd need further research to get something directly citable (without a lot of interpretation and discussion) as evidence in a primary paper on the subject.

Modelling Coolness

Google recently did a page on using its SketchUp software in teaching autistic children. This is obviously not an "autism intervention", but is still a pretty cool toy... and, frankly, if it's easier for a child to use than an alternate method such as drawing a floorplan (which, apparently, it is for at least some children), then I say to go with what works.

SketchUp does look pretty cool, to be honest, and looks far better than some of the 3D modelling software I played with when I was a kid. Given the fact that I'm comparing a modern product of a major corporation to 1990s cheapware, this shouldn't be much of a surprise. Beyond the obvious increase in featureset, however, it looks like they've done a great deal in terms of ease of use. Way to go, Google!

I'm not too sure what to think of "Project Spectrum" (some of the lesson plans are better than others), though I do have one major comment on the intro.

Guys, would you please stop reifying autism already? Autism is not something that "affects individuals' communication skills and ability to deal with social interactions". Autism is a description of, among other things, people's communication skills and ability to deal with social interactions. Gyah.

On the Media

As I noted in a previous post, I had my wisdom teeth out recently. I'm only starting to come out of the narcotic haze of the painkillers now (and will need to take another shortly), so my plans to start job-searching will have to wait. No, this isn't because of the pain -- it's because of how badly the painkillers effect me. Still, while I have a few lucid moments, I might as well comment on all of the stuff I've missed.

For one thing, I haven't been able to read any peer-reviewed journal articles. This... really, really sucks, from my perspective. More than any of the other effects of the hydrocodone they gave me, the fact that it pretty much destroys my attention span to the point that I can't read research articles drives me ready to tear my hair out.

This does, however, present a somewhat unique opportunity as I go over the news I've missed. This entry is going to be of a special format -- as I catch up, I'm going to post a brief summary of each article dealing with autism, a link, and a comment on just how offensive the media coverage of the story was.

To start with, take this piece, whose main offence was to equate all developmental disabilities. As this is supposed to be reporting on abuse of persons with developmental disabilities... this really shouldn't be the case. The nature of the disability in question should be at least stated. It is insulting to spread the stereotype that all persons with developmental disabilities are "mentally incompetent".

Any broad category of disabilities covers a huge range of issues. The term "physical disability", for instance, can cover anything from a trick knee to quadriplegia. "Developmental disability" is only different in that it covers a greater variety of issues... many of which are only issues because of the lack of available societal supports.

On the other hand, the article does a good bit to highlight issues of abuse. I have mixed feelings about it.

Next, we have this piece, dealing with an Aspie contestant in a talent show, deserves particular mention for being exceedingly odious. For one thing, the entire piece is based not on what Mr. James (the contestant in question) can or can't do, but rather on a judge's prediction on whether or not he can cope with the stress of being on the show.

The language of the article itself, however, is so blatantly offensive it's absurd. Even the title is offensive -- "Asperger's sufferer will not..." indeed! The first line of the article repeats the theme: "The X Factor contestant Scott James, who suffers from Asperger's syndrome..."

Excuse me. Asperger's is a description of the way your brain's wired. You don't suffer from Asperger's (or autism) any more than you suffer from liking classical music (and, in fact, it's harder to separate "Asperger's" from the rest of you than it is said like). Saying that someone "suffers from" Asperger's (or autism, or...) is around as offensive as saying that someone "suffers from being Jewish".

Next, a local piece on the whole sign fiasco. Decent coverage... except I'm going to need to withdraw my earlier declaration of respect for Ms. Wallace. When the heck will these people realize that the cancer thing is even more offensive?

Then there's this piece which deals with an Aspie surfer... and deliberately calls up the whole lack-of-empathy stereotype. Enough said.

Next, this bit on the murder of a twelve-year-old autistic boy. This article actually manages to avoid being offensive. Way to go, UPI! Of course, the incident itself is another story, but at least the coverage wasn't bad.

This article on a summer camp for autistic kids actually looks pretty cool. Beyond its continuous reification of autism and oversimplification of the research, the article actually makes the program look decent... which should not be taken as an endorsement. All that really means is that the program isn't setting off any red flags based on this article.

This article covers the opening of a new school in a spectacularly uninformative fashion. Kudos to the author, though, for its opening line.

An article in the National Post details the (hopeful) end of a truly obscene saga of an autistic Canadian who got trapped in Kenya. Nothing too bad about the article, but, again, the story itself is pretty offensive.

According to this piece, an autistic child whose school was attempting to deny him the ability to bring his service dog with him won a victory in court. I do, however, feel sorry for Ms. Crook. While it involves skipping out of the chronology of the articles, it's worth noting that there's a considerably more offensive follow-up story by ABC here.

Really, when will the media learn that Autism Speaks doesn't speak for autistics?

Anyway, next up is a Salt Lake Tribune article on a couple who's been charged with abusing thier autistic son. Again, good coverage for a nasty incident.

This piece tries to hold out an autistic nineteen-year-old who recently became an Eagle Scout as an inspiration. At least it's better than most such attempts... which isn't saying much.

Finally, the Onion's latest effort in mocking Obama concluded with a pretty damn offensive bit about Biden and Asperger's.

Well... that's a few days in the news for me. No, this wasn't really atypical.

P.S.: It looks like the Psycho Donuts fiasco has come to an end. Cool.

Edit: It may just be the painkillers kicking in, but I find this incredibly amusing for some reason.

On Finding Things Out From Unlikely Sources

Not all of the blogs I follow are run by people who I agree with. In fact, some of them have downright offensive content.

Beyond the obvious reasons (e.g. keeping an eye on one's enemies, being aware of arguments against positions I hold so I can prepare for when they're inevitably used against me), I also occasionally find out information of interest from them. By this, I don't mean information of interest about what they're up to (I'd file that under the category of "the obvious reasons"), but rather information about the neurodiversity movement.

You see, they're usually doing the same thing that I am -- namely, keeping an eye on the other side of the "debates" (kinda hard to call it a debate when the "other side" doesn't regard you as capable of rational argument, but I digress...). The fact that they report it from a position which is biased against us doesn't change the fact that they do report on said news.

This comes in handy on occasion. For a variety of reasons, I sometimes miss information that really would have been of interest to me... or that I'd find comment-worthy.

I was rather firmly reminded of this yesterday when I came across some information at one of them.

I won't link to the post... or to the blog in question. I don't want to raise that... person's... Google ranking any. I will remark that his hate-filled invective has managed to generate a response blog which typically comments on the blog's inane deluded ramblings... which often somehow manage to be more offensive than Encyclopedia Dramatica's entry on the word "offended".

No, I won't link directly to that, either. If you are morbidly curious enough to want to see a page which actively attempts to be the most offensive thing on the Internet, please don't say I didn't warn you. I probably wouldn't even bring it up if I wasn't under the influence of narcotics, but, in my current mental state, I literally can't think of a better way to convey just how offensive That Person's hate speech is.

In the midst of one of his hate-filled rants, however, he managed to mention something genuinely interesting, something that I wasn't aware of.

You see, I'm almost certainly not going to be able to attend this year's AutCom conference. It's a simple matter of funding -- I blew most of the money that I could have used to go there by going to Autreat instead. As I knew I wouldn't be able to go, I'm afraid that I didn't check out the agenda for the AutCom conference in as much detail as I should have.

Simply put, That Person mentioned (in as offensive a way as possible) that Amanda Baggs would be re-presenting her talk from Autreat at AutCom. This drew me short for a moment -- to say that Amanda's talk had been good would be a major understatement.

I checked over the agenda to confirm... and there it is. I don't know if Amanda will be representing her talk exactly as she gave it at Autreat or if she's revised and/or made additions. Either way, I can't reccommend it enough.

And no, Amanda's isn't the only breakout session which appears to be a rehash of an Autreat presentation. Right now, I'm really wishing I could go to AutCom.

Who knows, I may be able to find a way. It'll just be extremely tricky.

And this entry took me well over twenty four hours to write. Gyah, the painkillers are effecting my functioning level...

On Timing

I finished my program this week. I suppose I'll need a new sub-heading for my blog, even though I'm going to start applying to Ph.D. programs soon.

For now, however, I'm going to just kick back and relax... and get my wisdom teeth out (an hour or two from now). It was pretty hard to work an appointment for that in around my practicum schedule.

And I'm going to start job-searching (for supervised fieldwork) on either Monday or Tuesday, depending on how much pain I'm in. Either way... new sub-heading, here I come...

Adults on the Autism Spectrum Leave the Nest: Achieving Supported Independence

From the very beginning of this book, I had mixed feelings about it. The author actually has a pretty good understanding of and background in disabilities and writes from that perspective. On the other hand, the author's understanding of autism is pretty thoroughly flawed. That said, however, the program talked about in the book was put together through emperical eclecticism (i.e. "do what works") and that has somewhat compensated for some, if not all, consequences of the author's lack of understanding.

Or, to put it another way, her heart's in the right place. This is surprisingly common when dealing with the clinical community.

This is also ironic given that one of case studies in the introduction was specifically selected for the purpose of illustrating the harm that misunderstanding a disability can cause. This case study is decidedly not the only one contained within the book which illustrates this problem. The author's selection of which case study to select to illustrate the problems which can arise when a disability is misunderstood is, in itself, a case study in the ways in which the author misunderstands autism.

This is not to say that the case study she selected -- that of a client who had multiple misunderstandings and encounters which, among other things, led to him being placed in "residential remedial care for boys with sexual deviancies of all kinds" (p. 22) and eventually being sexually exploited -- doesn't illustrate some of the problems that misunderstandings can cause. It's just that another of her selected case studies -- that of a girl whose parents misunderstood the nature of her disability and considerably underestimated her potential -- is far better as an illustration of this... even though the author selected it because it "typifies the newer practice, taking advantage of whatever help is available" (p. 15).

I'm also not trying to say that she's uneducated. The opposite is the case. She just misunderstands autism in the same ways that much of the clinical establishment does... which makes sense, given that she's getting her information from said clinical establishment.

She also tries to view autism from the perspective of a conceptual framework intended to handle injury- or illness-induced brain damage. To paraphrase Michelle Dawson, she likes to view autistic brains as broken versions of non-autistic brains despite the fact that this view of autism is not what the evidence supports.

I won't get into the construct validity of the book's description of executive functioning. I won't get into the issues associated with trying to teach autistics NT-style executive functioning skills and why I'm not surprised that such efforts often hit major roadblocks (for crying out loud, autistic people need autistic executive functioning skills!). I'm not even going to get into the various problems I noticed in the program the book details (most of which follow from the flawed understanding of autism it's based on).

I will, however, note that the program appears to have done some actual good... and is certainly a step in the right direction (i.e. it's better than full-out institutionalization and the situations many of the clients came from). I am, however, unaware of any peer-reviewed outcome study and the book only provides case studies as evidence.

A couple of other points:

• Chapter 1 ("What Are Neurodivelopmental Disabilities?")... gyah! Overgeneralization based on a biased sample, much? I know you're working from your experience, lady, but you should have learned about sampling bias well before you got your Ph.D.! And, to boot, that's not the only problem with the chapter -- just the one which stands out the most.
• The book writes off autistics who do not recieve early intervention. This is particularly interesting given the fact that one of the case studies is of a man who didn't recieve such intervention and who managed to hold a job for thirty years.
• The continuous buy-in to the idea of adult autistics as physically grown-up "large children" is just plain offensive.

So, in short, this is basically a manual for a program that appears to be better than most institutions. That's not a bar that's terribly hard to reach... and it's lacking evidence on several critical elements that would determine whether or not it qualifies as an institution itself. I very much would not reccommend this book to the parents of an autistic child.

A clinician trying to design a program might find it interesting, though -- I'd just have to caution them that the program in question had more than its fair share of flaws and insure that they interpreted it through an appropriate framework.

Of course, I may have to revise my opinion in the future. One book, written by one of the people who designed the program, is hardly enough evidence to base a final judgement on. If I find something out about the program that isn't in the book (or that I missed during my read-through -- I did, admittedly, skim some sections), who knows what my opinion might change to?

Billboard Fiasco

Perhaps understandably, I have been in and out of touch a lot as of late. Last weekend, I unexpectedly found myself cut off from the 'net for... well, pretty much the entire weekend. I had 158 e-mails in my secondary e-mail account (which I don't use for mailing lists) when I got back. Newsfeeds and the like? Didn't get 'em. I'm still catching up on blog posts.

As a result, I managed to miss a pretty interesting event, something that's truly unusual in the disabilities field.

It started out pretty typically: York County, PA's Autism Society decided to try some truly uncreative advertising. Upon noticing, a number of autistic (and non-autistic) people promptly complained. This included a letter from the ASAN.

That's where things got strange.

In only a few hours, the president of York's ASA chapter wrote back... and apologized. The ad campaign was promptly withdrawn.

Wow... an autism organization actually taking responsibility for a mistake and apologizing to the autistic people they offended? Who'd've thought?

I'd never heard of Ms. Wallace (the president of ASA-York) before this. She's now earned a good bit of respect from me. Way to go!

On Shock

I'm mostly caught up on the newsfeeds and blogs that I follow. This is after effectively missing three days, and dedicating most of two days specifically to catching up.

Somehow, I think I try to follow too much.

Writing on the articles I've been planning to review will, however, have to wait... as I literally can't find my copies of them. I'd print out replacements, but my printer's broken, and I find it difficult to review an article while needing to switch between windows to read it and write about it.

While looking, however, I found my printed copy of what is easily the worst article I've ever read. In other words, it's the closest thing I have to a prototype of "bad science" in the peer-reviewed literature.

And no, papers in Medical Hypotheses and the like don't count. They're not peer-reviewed.

Anyway, that paper is a "wonderful" little piece (notice the sarcasm) by van Oorsow, Israel, von Heyn, & Duker (2008) entitled "Side effects of contingent shock treatment".

I originally came across this paper around a year ago. I summarily ignored it.

I came back to it, however, earlier this (calendar) year. As part of one of my classes, I was required to do a brief review of the literature on one topic and summarize the methodology of a few papers on it. I chose contingent electrical stimulation -- not because I liked the topic, but rather because I viewed it as an excuse to familiarize myself with the literature on it... and thereby improve my ability to counter that literature.

My paper's section on this steaming pile of crap reads:

Van Oorsouw et al. (2008) attempted to evaluate the side effects of the use of contingent shock to treat the "severe problem behaviors" (p. 513) of nine students at the Judge Rotenberg Center (JRC) in Canton, MA who showed "severe forms of SIB and aggressive behavior" (p. 514). The shock devices used were JRC's graduated electronic decelerator model one (GED-1).

A nonconcurrent quasi-multiple baseline across participants design was used. The length of baseline in each subject was the difference in time between their arrival to JRC and court approval for the use of contingent skin shock. During baseline conditions, DRO procedures, a token system, a response cost system, and contingent restraint were in effect. These procedures were also in effect during treatment conditions (van Oorsow et al., 2008).

During treatment conditions, skin shock was delivered contingent on SIB and/or aggressive behaviors. Subsequently, a staff person or teacher who administered the shock would explain the contingency and prompt the student to continue what they were doing prior to the shock (if needed). Following this, the electrodes would be rotated slightly and the time of administration would be recorded (van Oorsow et al.,
2008).

Four categories of target behaviors were also recorded: positive verbal and nonverbal utterances (PVNU), negative verbal and nonverbal utterances (NVNU), socially appropriate behaviors (SAB), and off task behaviors (OT). Van Oorsow et al. (2008) defined these behavior categories only by example.

Data was recorded by 10s partial interval recording based on 10-min videotapes of randomly chosen points of time in the participants' day. All recordings were selected so that teachers and staff were not applying reinforcing contingencies within them. Average IOA was 95.48%. Data was analyzed by visual analysis by seven clinicians. Mean agreement for change across clinicians was 78% for PVNU graphs, 92% for NVNU graphs, 91% for SAB graphs, and 89% for OT graphs. Agreement ranged from 57% to 100%. All participants were evaluated as having either improved or not changed in each category. Group analyses were not conducted (van Oorsow et al.,
2008).

Data on one participant ("S.S.") was not taken in regard to SAB because she had "severe mental retardation, and who, by definition, failed to show any form of SAB" (van Oorsow et al., 2008, p. 522). Despite this assertion, S.S. is listed as a girl with moderate mental retardation and autism within the study's demographic table. Van Oorsow et al. do not provide support for this assertion.

Additionally, this design is not appropriate for a full analysis of side effects, as it only allowed for the possibility of four specific negative effects (i.e. lowered PVNU, increased NVNU, reduced SAB, and increased OT) and only included nine participants. As it is common practice to report effects that occur in less than one percent of the treatment population as side effects of a treatment and to take them into account when planning a course of treatment, the number of participants was too small to allow a comprehensive evaluation of side effects. Additionally, it is common practice to take into account a wide variety of effects, including those that are only directly available as private events (c.f. Eli Lilly and Company, 2006). As such, the study fails to provide sufficient support for van Oorsouw et al.'s (2008) assertion that "the objection that CS should not be used due to associated negative side effects, fails to be inconsistent with the results of this study" (p. 523).

This, of course, is only a tiny fraction of the problems with the paper. For one thing, I have reason to suspect that they misrepresented their procedure in the article. A careful reading of the article and comparison to publically available documentation will indicate that standard procedure at JRC involves a change of setting and activity schedule upon receipt of court approval for the use of shock, something that the article did not report. Assuming that this was the case... well, let's just say that the ethics of their procedure were even shittier than my summary suggests.

And, of course, since it was a purely methodological paper, I didn't even begin to directly touch on the ethical problems with what they did. Suffice it to say that they were many and manifold.

For instance, one of the subjects was an eleven year old boy whose only diagnoses was oppositional defiant disorder and "mild" mental retardation. Another was a nineteen-year-old woman who had a diagnosis of post-traumatic stress disorder.

Words fail me here. The horses and deer are prancing.

Oh, and there are the usual randomization issues, selectivity bias... yeah, all of those. Poor, poor study on so many levels it's not funny.

References:

Eli Lilly and Company (2006). Prescribing Information (Prozac Label, 2006). Retrieved February 28, 2009, from http://www.fda.gov/cder/foi/label/2006/018936s076lbl.pdf

van Oorsouw, W., Israel, M., von Heyn, R., & Duker, P. (2008). Side effects of contingent shock treatment. Research in Developmental Disabilities, 29, 513-523.