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, howver, 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.

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.