A Year In Review

Today is the last day of the year 2010. It is something of a tradition on this day to spend some time looking back on the year that has gone by, thinking and reflecting on the events which have occurred.

Normally, I do so privately. This year, I am doing a portion of it publicly -- on this blog.

For me, the year started off with the Zakh Price case. There are some situations that you just can't leave alone; for me, that was one of them. I won't discuss what my role in the whole matter was, but I did play one. I don't know if I, personally, made a difference... but I don't really care. As of the last I heard from the family (which was late summer or early fall), Zakh was doing quite well... and the situation had been resolved in a favorable fashion. In my honest opinion, that's all that really matters.

In other news, Andy Wakefield lost his medical license that month, and I very much enjoyed the 2010 CARD conference (although it was marred by one highly bigoted pseudo-scientist pretending at a neurology presentation). I was actually at the conference (or, more accurately, in my room at the conference hotel) when I found out about Wakefield, and it was all I could do to avoid waking my neighbors with a whoop of joy.

Then I got back and immediately (i.e. the very next day) went in for a much-needed knee surgery. I was on crutches for more than two months.

I discovered that the James Randi Educational Foundation is physically located not that far from my house... down the street from a psychic and across the street from a chiropractor. I've very much enjoyed their periodic open houses... and Randi himself is quite entertaining (and a breath of fresh air).

On the advocacy front, the Geiers moved into my metaphorical backyard and started peddling the "wonders" of chemical castration to the parents of local autistic children, shielded by a number of highly-influential political figures and using a local radiologist as their local patsy. I've been trying to "deal with" them ever since.

I got into a long and protracted series of misunderstandings that I still can't figure out a way to rectify (and that is still bothering me). Actually, that technically started last year... but it continued (and got a great deal worse) this year.

I resumed the MS Counseling program at Nova Southeastern University... and promptly had my first major issue with a postgraduate professor. It says something when it takes a flat-out written statement of intent to discriminate (in the form of deducting points for autistic literalism) for me to consider something a "major issue". I also got my first postgraduate B... in his class. Had it been any lower, I'd have challenged it; as is, I have the written notice available and thoroughly documented to show anyone who questions me about it.

Honestly, what sort of professor does something like that in writing? Seriously!

In a bit of irony, it was actually a bit worse: I received that written statement literally the week before I was scheduled to speak at Autreat. I'll get back to that in a bit, but the sheer hilarity of the timing has lead to a number of jokes since... especially since the professor was aware of both my diagnosis and my presentation.

I also did a brief internship at a small local school for individuals with severe developmental and intellectual disabilities. The kids there were very interesting (and very different from any population I'd previously worked with). Incidentally, for any parent from here on who tells me that I don't know what kids like theirs are like (to insinuate that their child is more severely disabled than any I've worked with)... yes, I do. Working with that population can be a serious mind-fuck, and I do not shy away from the use of that particular vulgarity in this case.

Then my internship ended (with the end of the academic year) and I started working for a behavior services company in Dade County. I've been doing part-time human resources work for them... which does, at least, help pay my expenses.

And, of course, I gave my first conference presentation: a presentation on pseudoscientific medicine in the field of autism. I've done related blog posts here and here, and I posted the PowerPoint slides to the Autreatinfo Yahoo group. I've also uploaded the slides here, if anyone wants to take a look. (Note that I verbally departed from them at several points. I'd be more than happy to explain in more detail if anyone asks in the comments.)

The presentation was two hours long, involved one hundred and fifty-five PowerPoint slides (of which five were references and suggested further reading), and contained thirty reference citations (not counting duplicates). During the preparation, I read far more than this -- my lit review for the thing involved over two hundred peer-reviewed articles and five books... of which, two were med-school textbooks.

Thinking back to that time, I am astounded that I managed to keep my sanity. I was, for a while, not only recovering from knee surgery (on crutches), but doing that internship, preparing that presentation, continuing my advocacy work, and taking a course load and a half of postgraduate classes. Yes, I took 150% of a semester's postgraduate coursework over the summer... on top of everything else. It was not particularly smart of me, and I really haven't quite fully recovered from all of that. The fact that most of my "recovery" time was spent working part time while taking a full course load (not, fortunately, the extra-full course load I took on over the summer) of classes while working part time certainly didn't help. My active participation in various student organizations and continuation of my advocacy work didn't help, either.

Fall, by contrast, was fairly... routine. There were a couple of crises which I can't really talk about, and work has been rather frustrating for reasons that I also can't talk about here, but I tried to use the time to recover. I failed.

I also grew pretty thoroughly sick of the MS Counseling program for a variety of reasons, most of which focus on the high bullshit content of many of the courses. I will be reviewing my "diversity studies" textbook later, but I've already reviewed my so-called "ethics" text. Of the two, the "ethics" book was the better one.

As the year pulls to a close, though, I'm filled with some degree of renewed optimism. For one thing, I've switched programs as of the upcoming semester (and I sincerely hope that the MS General Psychology program will actually involve considerations of evidence!). For another, my new program is a thesis program... which means actual research as part of my graduation requirements!

I suspect that several of my regular readers will find my thesis of interest... and yes, I do already know exactly what I'm going to be doing for my thesis. I will comment more on it after I've actually started doing it... but I suspect that one reader of this blog will find it very interesting: it falls under the category of behavioral sciences meta-research and was actually inspired by some of her comments.

The change won't delay my graduation too much... but my new classes are ones which I can hopefully actually enjoy. I am very much looking forward to them.

Hopefully I'll be able to catch up on my accumulated e-mails sometime next year. I'm something like three thousand behind...

So, in conclusion... for everyone reading this, happy new year!

Edit: Corrected a really embarrassing typo.

On My Recent Conference Presentation

My Autreat presentation went pretty well, I think. I uploaded the slides to the conference's Yahoo group, if anyone's interested.

Or, alternately, feel free to ask and I'll send them to you.

On the flip side, things have been extraordinarily hectic here. Between an "interesting" (one of my professors has decided that deducting points from my grade for autistic literalism is acceptable behavior), being swamped with schoolwork, and being otherwise preoccupied, I haven't really been able to spare much energy for blogging.

That said, however, I really should have written more. Sorry.

In any case, I just realized that I'd only posted one of the two essays I sent in as supplementary material for my presentation. As such, I'm posting the other:

How does it harm autistics?

Pseudoscientific medicine intended to "cure autism" harms autistics in a wide variety of ways. First and most obviously, the treatments themselves are often harmful. The financial harm to families is often substantial, with many families spending simply absurd amounts of money – some even mortgaging their homes – to pay for "treatments" that can be considered fraudulent at best. Many pseudoscientific treatments require considerable effort to implement while delivering illusory or placebo-equivalent benefit (or even producing harm). Families become emotionally invested in the method, and are often incredibly disappointed when it doesn't work. Sometimes the family avoids this disappointment by seeking out ever deeper and darker depths of woo.

The acceptance of pseudoscientific medicine promotes substandard care due to undertrained practitioners who bypass the relevant licensure requirements. It imposes double-standards on pseudoscientific and scientific practitioners, standards which inevitably favor the pseudoscientists and undermine the constant efforts of scientific practitioners to improve standards of care. It provides false knowledge of how to deal with real problems, and encourages people to ignore, disregard, or remain ignorant of a wide variety of standards of medical and research ethics, and encourages default logic in treatment.

It provides countless confounds to research aimed at helping professionals understand and help autistics and interferes with the conducting of such research, making it harder for genuine scientists to recruit participants.

It encourages the reification of autism, demonizes our neurology, and acts to dehumanize autistics. It promotes a culture of desperation and prevents acceptance of our differences. It legitimatizes the exploitation of us and our neurology by various political groups. It even distracts from real issues and endlessly complicates the discussion on autism.

Perhaps it is more meaningful to ask, "How doesn't pseudoscientific medicine harm autistics?" It would certainly be a far shorter list.

It's worth noting that the list in the presentation itself was longer -- I added several items after I wrote the above. Sometimes "Gyah" doesn't quite cut it.

A Bit More on Autreat

In a recent discussion in an online forum, I attempted to explain Autreat to several parents of autistic children. In the process of doing so, I made a statement which I realized managed to capture a good bit of the Autreat experience in a few short sentences. To wit:

It was a serious autism conference, with a very illustrious set of both attendees and presenters... the llama thing and the make-your-own-kalimba lessons notwithstanding.

The Return from Autreat 2009

As much fun as Autreat was, the trip back was... well, generally less enjoyable. Frankly, with all of the obstacles that seemed to pop up (including flight delays -- yes, that's in the plural -- getting spectacularly lost on the way to the airport, and other miscellany) I was starting to feel like an NFB officer trying to attend an ACB conference.

Then, when I finally arrived at Fort Lauderdale airport, still wearing the shoes (in more than one sense) and generally feeling good about things, it took Mom less than five minutes to start talking about how she's been cleaning the house... and how she'd completely disrupted one of the systems I use to ensure that I have everything with me when I leave in the morning.

She also catagorically refused to let me put anything back the way it was, saying that it was a "mess". In other words, she was more concerned about the appearance of the house (and specifically having the table by the door that I usually exit through remain free of papers) than my ability to be successful academically. Of course, she didn't see it that way -- as it took me several minutes of trying to get a word in edgewise (and quickly approaching meltdown) before I could even begin to explain why I wanted to do so. Even after I did, I seriously doubt she understands... and I doubt she ever will -- mainly because she doesn't want to.

Edit: Corrected a pretty nasty revision error.

Autreat, 2009

I've been debating what to write about Autreat. Frankly, there's so much to say that it's nearly overwhelming. I literally don't know where to start.

I think, however, that it would perhaps be best to focus on one aspect of the experience. While what I'm about to say is literally true, that isn't why I chose it. Perhaps some of the readers of this blog will understand.

I brought three pairs of shoes to Autreat. The first of them was a fairly fancy pair of Calvin Klein dress shoes. They're easily the most fashionable shoes in my wardrobe and pretty obviously not designed for my feet: my feet are far wider than most, especially at the toes, than most of equivalent length. The shoes in question, however, are not only sized for a normal foot, but taper off almost to a point at the tip. All of this makes them the least comfortable shoes I regularly wear... but they're also the ones that make me look the best.

The second pair was the set that I wear the most. They're sized much more appropriately for my feet and are reasonably fashionable, being composed almost entirely of black leather. Unfortunately, I rarely have the time to get them properly polished (and this has been historically true), leading them to have acquired a good bit of visable wear and tear. These were the shoes I wore on the trip to Autreat -- the other pairs were in my baggage.

The third, and final, pair was one that I brought almost on a lark. I decided that I'd need clothes to wear in the event of incliment weather, and fished out a pair of waterproof shoes that I hadn't worn in years.

I'd bought these shoes back in my undergraduate years. At the time, I didn't know much (okay, anything) about fashion, and I'd liked them because they had all of the features of high-grade hiking boots: they offered excellent support, good traction, were extremely comfortable, and had a Gore-Tex lining (meaning that they're waterproof, but still breathe like a normal shoe). As I've learned about fashion in the years since, however, I've come to realize just how much of a disaster they are in terms of fashion.

Not only do they literally not go with anything else (due to unfortunate choices in coloration on the part of the designers), but they're ragged as Hell. I wore them literally every day for most of two years, and they show it. Several of the latches for the laces have broken; the laces themselves (which aren't the ones which originally came with the shoes anyway) have broken and are held in the shoe by simple knots. Loose threads stick out from parts of the shoes... but they're still the single most comfortable pair of shoes I own.

At Autreat, I wore them almost every single day. No one noticed... unless and until I pointed them out.

Even then, nobody cared.