Wednesday, August 26, 2009

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.

Tuesday, August 25, 2009

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.

Sunday, August 23, 2009

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...

Friday, August 21, 2009

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...

Tuesday, August 18, 2009

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?

Monday, August 17, 2009

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!

Wednesday, August 12, 2009

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.,

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.,

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.


Eli Lilly and Company (2006). Prescribing Information (Prozac Label, 2006). Retrieved February 28, 2009, from

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

Friday, August 7, 2009

Blatant Bias

A quote in Edelson, 2006, which highlights a pretty blatant anti-autistic bias in the existing literature:

Other early researchers agreed on this latter point, including Rutter (1966b), who stated that many commonly used measures of intelligence are “usually unsuitable” (p. 91) for children with autism given their reliance on verbal subtests. However, in another chapter in the same book, Rutter (1966a) reported that 71% of children with autism in his sample had MR, a statistic obtained in a study that utilized the Wechsler Intelligence Scale for Children, a commonly used measure of intelligence with many verbal subtests (see Rutter & Lockyer, 1967, which is a report of the same study). Thus, despite the recognition that certain methods of intelligence determination were inappropriate for children with autism, they were still used; and data from these studies were then cited by subsequent authors. (pp. 72-73, emphasis in original)

Of course, that's only one of many types of bias highlighted in Edelson's paper. It's a pretty good read.

On Grief

My father died this morning.

This is not a comfortable thing to write. It took me nearly six hours from when I left the hospital to get to the point where I could even start. Although you can't see from reading this, the first sentence of this entry took me several minutes. I stopped writing and simply cried for a while after the first few words.

Dad was in the ICU of the Cleveland Clinic, Florida and was scheduled for a surgery to repair what I suspect was a renal aneurysm (and why is it that people think I don't understand medical terminology? I'd much rather if they didn't dumb things down "for me"; so much information is lost when they do...). The operation would have been today.

My father's heart was already giving out on him. I knew that it was just a matter of time.

That didn't prepare me for the sight of my father's corpse.

I won't cover what that was like. There are some horrors that words fail to adequately express.

My mother was there when it happened. I wasn't -- I was at home, asleep. I was planning to visit again after my practicum today so that I could be there for him before the operation.

For obvious reasons, neither the operation nor today's practicum will be happening. I wish I'd spent more time with him yesterday... but it's too late to do anything about that.

I also wish I hadn't been sick last week. In a true perversion of the sort that pops up from time to time, I managed to catch a throat bug from one of the kids at my practicum and was sick throughout most of the week. I didn't visit until yesterday, when I was informed that I was no longer contagious. At the time, I told Mom that I'd never be able to forgive myself if I gave him something and that made him worse. As it turns out, I shouldn't have worried.

My last words to him were that I was going to class, and that I'd see him tomorrow (well, today, strictly speaking). I wish I hadn't said them.

I think that everyone has regrets at times like these. I'm no exception. I just wish they didn't hurt so much.

Then again, I know why they hurt so much... and wouldn't change those reasons for the world.

I won't pretend that my father was perfect. To do so would be to insult his memory. I won't -- can't -- do that. He was as human as anyone else. He was stubborn, often cantankerous, and frequently forgetful... among other things.

I loved him. It's difficult to express how much it hurts me to use the past tense in that statement. Part of me is still in denial.

It's tempting to react with anger, to lash out at something -- anything -- for my loss. I know better. The medical personnel at the hospital did everything they could for him.

It just wasn't enough. By all accounts, they'd warned him that sitting up was dangerous for him in his current condition because it risked bursting the aneurysm. While I'll probably never know for sure (there won't be an autopsy), it looks like that's precisely what happened.

And, according to Blogger's timestamps and my system clock, I've now spent more than five hours writing this. It's been somewhat over eleven since the events I describe above. Not all of this time has been spent trying to type this up, but the vast majority has. It's just that difficult.

I won't be blogging much in the next few days. I won't even have much access to the Internet. Dad wanted to be buried up in his hometown in Andrews, South Carolina.

We'll be granting his request. We even managed to secure a plot next to his father's grave for him.

Emotional turmoil aside, I suppose I've been taking things about as well as could be expected. I cried, of course. I joined in with my family's prayers over Dad's corpse even though I'm not exactly religious. I came home and cried myself to sleep... and wasn't really feeling that much better when I woke up four hours later.

I'm grateful for the way my mom's taking charge of things. I've had to run some errands and take care of some things related to the arraingements we're making, but the lack of demands has let me work through things somewhat.

Writing this blog entry has helped, too.

I've also broken out what I semi-jokingly refer to as my "comfort research". By this, I mean the set of articles I have (but haven't read yet) that I'm fairly confident will be easy (emotionally speaking) to read through and will also be enjoyable and informative.

Or, to put it another way, I ransacked Michelle Dawson's and Morton Gernsbacher's CVs, grabbing every yet-unread article and book chapter from them that I could. I don't have everything (yet -- gotta love the ILL system), but good, unbiased research is, for me, extremely effective stress relief and a source of great comfort (especially when the articles aren't biased in their interpretation of findings!)... the main problem being that rereading an article is of much lesser effectiveness. I've also found a few articles by Meredyth Edelson that look quite promising. I'm not quite sure what I'll do once I've exhausted them, but I'll make do somehow.

I suppose this may seem to be a fairly unique way to deal with this sort of grief if you look at it from a superficial standpoint. The truth of the matter, however, is that it has a lot in common with more "normal" coping strategies. Many people, when grieving, seek comfort from a favored activity, a favored location, a favored food... the list goes on and on. I will admit that the specifics are unusual in my case, but that's about it.

The question becomes one of whether or not an outsider -- someone who doesn't know me or understand autism -- would understand the reaction... and what they'd make of it.

In any case, it's now been around thirteen hours since Dad died. It's been more than seven since I started writing this. I'm tired... and, frankly, I have arraingements to make.

I was planning a couple of blog entries for the next few days, reviews of a pair of articles which I think are pretty significant for the autistic community (even though one of them isn't on autism). They will have to wait. Hopefully, I'll be able to get to them next week.

Thursday, August 6, 2009

On Experience and Knowledge

There are times when I believe I've seen entirely too much of the evil and suffering in the world. Over the course of my life, I've seen children abused by their parents (sometimes in truly horrific manners), I've seen casual stupidity on levels that truly boggle the mind, and I've seen people totally undeserving of what happened to them suffer in spectacularly god-awful ways.

Of course, my instinctive reaction to this sort of thing is to try to understand it, so that may help account for the amount of horrible stuff I've seen. I'm not quite sure how -- it's not like I spent my childhood hanging around hospital burn wards (althout I am quite acquainted with what you see in them, thank you very much) -- but this reaction has certainly been influential in the course my life has taken.

I hate to see evil at work. Human stupidity frustrates the heck out of me. Seeing good people suffer is something that I never enjoy (and something that makes me want to help out in any way I can).

Despite this, however, I can't help but feel that I'm becoming a bit jaded at times. Hell, I barely even reacted when I first saw a certain work of a hate group that I won't dignify by mentioning by name here.

My reaction to a recent news story about the murder of an autistic child was a perfect case in point. When I read it, I found myself shocked.

No, it wasn't at the crime itself. Frankly, it takes more than finding out that some woman (appears to have -- I haven't evaluated the evidence in this case myself) burned her autistic child to death for financial gain to shock me. There have been cases where mothers did the same thing to their neurotypical children for lesser reason (and no, this is not intended as a statement that neurotypical children are "worth more" -- it's intended as a depressingly realistic acknowledgement that many people, including mothers of autistic children, percieve things that way).

It was the punishment meted out -- which is very much out of line with the usual pattern in these cases -- which did it. Perhaps attitudes are changing... or perhaps I'm just being overly optimistic. I hope it's the former.

And yes, I condemn this mother's actions in the strongest terms possible. There is no excuse whatsoever for the premeditated murder of a child.

I just wish it happened less often.

Tuesday, August 4, 2009

Management of Children With Autism Spectrum Disorders

Every so often, I find a research article that makes me want to celebrate. On the other hand, I also periodically find articles that make me want to slam my head against a wall in response to their sheer stupidity.

And, although it's rarer, I do occasionally find an article that makes me want to do both. For obvious reasons, it's almost inevitably different sections of the same article that do each. I haven't had the experience of having both reactions to the same sentence... or the same paragraph, for that matter.

I bring this up because that last is the sort of reaction that I had to this article (also findable here), which was published two years ago in the absurdly prestegious journal Pediatrics.

Entitled "Management of Children With Autism Spectrum Disorders", the article is basically a comprehensive introduction to autism, intended for general practitioners so that they can familiarize themselves with the field for whenever they get an autistic patient.

It's a nice idea -- and the journal it got published in is probably the one which pediatricians are most likely to read. Unfortunately, a good bit of the information contained within is biased or just plain wrong.

Now, to be fair, the article is two years old and a lot of the studies refuting points in it were published in the last two years (thanks, Michelle!). Some of it, however, was just plain wrong, even with what we knew then... and to say that the clinical philosophy statement is questionable is a major understatement.

To quote:

The primary goals of treatment are to minimize the core features and associated deficits, maximize functional independence and quality of life, and alleviate family distress. (pp. 1162-1163)

The first clause of this, "to minimize the core features and associated deficts" comes in direct conflict with the remainder for the simple reason that autism isn't just a set of deficits. "Minimizing the core features" of autism includes those srengths as well as weaknesses -- it's trying to turn an autistic person (to the degree possible) into a non-autistic person. This is pretty thoroughly appalling... but almost to be expected.

The article also drags up the whole theory of mind myth, the joint attention thing, the myth of the "need" for intensive behavioral intervention... the list goes on and on. In general, it drags up a crapload of invented, so-called "knowledge" and passes it off as truth.

Hell, it even manages to miss the fact that autistic children learn and develop in ways completely out of line with neurotypical developmental timetables and skill hierarchies.

The worst section of the paper, however, is the section on applied behavior analysis. The errors start with what ABA is... and just keep piling up from there. If you believe the article, ABA is:
... the process of applying interventions that are based on the principles of learning derived from experimental psychology research to systematically change behavior and to demonstrate that the interventions used are responsible for the observable improvement in behavior (p. 1164).

... umm, no.

Cooper, Heron, & Heward's (2007) textbook, Applied Behavior Analysis (2nd Edition) is pretty much considered (for the time being, anyway) the definitive reference on ABA. Its definition is:
Applied behavior analysis is the science in which tactics derived from the priniciples of behavior are applied systematically to improve socially significant behavior and experimentation is used to identify the variables responsible for behavior change (p. 20).

In other words, Myers et al. are wrong on two major points:
  • ABA is a science. The process of using tactics derived from that science is technically referred to as clinical practice based on ABA. While this may seem like quibbling, it's actually a fairly important distinction. Like any science, ABA offers predictions -- "what will happen if I do this?" -- theories, and very little else... although there are certainly interventions derived from it and experimental tests of those interventions (with the tests falling under the "ABA" category, but the manuals arguably not).
  • Practice based on ABA does not use "the principles of learning derived from experimental psychology research". ABA-based methods use the principles of behavior derived from EAB and ABA research. While some of these can be described as (or can act as) principles of learning, EAB and ABA research is only a subset of experimental psychology research... and much of the non-behavioral research has been devoted to learning. Simply put, Myers et al.'s definition suffers from both deficiency and contamination.

I could go on to critique the other various errors in this section... but won't. Frankly, the fact that the article couldn't even get the definition of ABA right about sums up the accuracy of the article's ABA section... and makes me wonder how the heck it got published in Pediatrics of all places!

While I'm not overly familiar with the developmental treatment models, there are a number of issues with the article's section of them as well... although, to be fair, some of these may be flaws in the actual models themselves. The DIR model, for instance, "targets the core impairment in social reciprocity" (p. 1165) despite the fact that while such a deficit does exist, it certainly doesn't lie with autistic children!

The section on speech and language therapy is comparatively good (which shouldn't be confused with an unqualified "good"), but the recommendations the article makes regarding social skills instruction are, frankly, abominable from an etical standpoint (not to mention that it drags up certain fallacies regarding joint attention yet again).

I'm not even going to get into the section on comparative efficacy. Let's just say that it's at least better than the section on ABA... which means that it at least got the definition of its subject matter right.

The section on sleep disturbance, however, was just plain scary. Benzodiazepines? Zolpidem? Trazodone?!? By contrast, the reccommendation of zaleplon was almost understandable.

Its section on psychopharmacology wasn't much better.

There was also one line which made me blink and react in a manner fully consistent with typical usage of the acronym WTF. Specifically: "However, if a child with an ASD presents with symptoms such as chronic or recurrent abdominal pain, vomiting, diarrhea, or constipation, it is reasonable to evaluate the gastrointestinal tract."

This needed to be said?

After all of that, however, the article had some truly outstanding points. Its coverage of complementary and alternative medicine (AKA "woo") is excellent (barring, perhaps, its coverage of facilitated communication, which I can't comment too much on). One line that comes to mind as particularly noteworthy is:

Some treatments, such as intravenous chelation, may be particularly dangerous and should be discouraged. One child with autism died as a result of chelation with edate disodium... despite the facts that a causal association between mercury and ASDs has not been demonstrated, there is no scientific evidence that chelation is an effective treatment for ASDs, and the effectiveness of chelation therapy to improve nervous system symptoms of chronic mercury toxicity has not been established. (p. 1174, chemical formula of edate disodium omitted)

Another worthy line:

Educational programs should be individualized to address the specific impairments and needed supports while capitalizing on the child's assets rather than being based on a particular diagnostic label. (p. 1167)

In short, I have highly mixed feelings about this article... but at least reading through the contents of the reference section will keep me busy for a while.

Sunday, August 2, 2009

Charlie and the Chocolate Factory

Reminiscing on the past can lead to a number of shocking revelations. For instance, I just realized that it's now been more than four years since I took my undergraduate abnormal psychology class.

At the time, in 2005, we were given a fairly simple assignment for one of our major class projects: to write some form of educational material for people getting into or involved with the field (at a fairly simple level) that covered some of the issues surrounding it.

I chose to write a rather sarcastic commentary on the then-current state of the psychiatric establishment. Of course, nothing's really changed since then, at least not regarding the issues my commentary was directed toward, so it's equally valid as a commentary on the psychiatric establishment today.

To make my commentary, I went through one of my old childhood favorites, Roald Dahl's classic book Charlie and the Chocolate Factory, in one hand, and a copy of the DSM in the other. The resulting effort was an essay that I'm still quite proud of to this day.

And yes, it's extremely sarcastic.

Anyway, the essay, in its entirety, read:

In past years, many pathological behaviors both in children and in adults were attributed to poor parenting. Today, however, we know that many, if not most, of these are actually due to neuropathology – malfunctions in the brain. Take, for instance, the behaviors observed both during and shortly before young Charlie Bucket’s visit to Mr. Willy Wonka’s Chocolate Factory.

Charlie’s family is a classic case of a family struggling to cope with mental illness. Charlie’s grandparents, despite a lack of any physical infirmity, have not left their bed in years. They show a chronically depressed mood, markedly diminished interest in almost all activities, chronic hypersomnia, psychomotor retardation, constant fatigue, and show some signs of diminished cognitive capacity. The expense of caring for the four of them on a single worker’s income has forced the family into extreme poverty, a factor which has likely contributed to their state. While Grandpa Joe’s depression appears to go into remission following Charlie’s receipt of the Golden Ticket, there is a considerable chance of a relapse.

Although it is unlikely that the family could afford the expense, new drugs such as Prozac® would likely help the grandparents enjoy their golden years without the constant cloud of depression that has long haunted their family.

Charlie himself, while not suffering from any diagnosable mental disorders, is suffering from severe malnutrition due to a diet consisting solely of bread, margarine, potatoes, and cabbage, with the sole exception of an annual chocolate bar. This merely serves to underline the difficulties his family is undergoing due to their struggle with the grandparents’ illness, however, and is only worthy of note in that it puts him at considerable risk for a variety of potential future problems.

Willy Wonka, the owner of the chocolate factory through which Charlie takes his tour, is suffering from a manic episode with psychotic features throughout the tour. In addition to constant talking, extreme distractibility, psychomotor agitation, and a lack of care for the severe injuries suffered by many of the children during the tour, Wonka shows signs of past periods of extreme, goal-directed activity. Additionally, his episode shows mood-incongruent psychotic features, as evinced by his belief of the existence of a nonexistent country (Loompaland) and the blatantly impossible origin of his assistants, the Oompa-Loompas, who are, frankly, even wonkier than Wonka, although not diagnosable at present. As he also shows signs of at least one past episode of depression, a tentative diagnosis of Bipolar I Disorder, Most Recent Episode Manic (296.44) can be given. However, a chemical analysis of some of his more esoteric confectionary may reveal some psychoactive agent, in which case the tentative diagnosis may be replaced with a substance-induced mood disorder with manic features.

Augustus Gloop is another example of a poor soul suffering from a textbook case of Binge Eating Disorder. While his lack of control of his eating resulted in a trip through the factory’s plumbing, drugs such as topiramate and antidepressants show promise for preventing such accidents in the future.

Mike Teavee, whose lack of attention and hyperactivity lead to an unfortunate case of being shrunken and stretched by a toffee machine, was likely suffering from Attention-Deficit/Hyperactivity Disorder. While the single day of observation is insufficient for diagnosis, he shows a failure to pay close attention to details, has difficulty sustaining attention in regards to things other than television, often does not listen when spoken to, is constantly “on the go”, talks excessively, and frequently interrupts and intrudes on others.

Veruca Salt, who would once be called a “spoiled brat”, is now known to have Oppositional Defiant Disorder. While the requisite duration of at least six months has not been directly observed, Mr. and Mrs. Salt’s reactions indicate that her frequently losing her temper, arguing with adults, blaming others for her misbehavior, and refusing to comply with adults’ requests and rules has been part of a longstanding pattern of behavior. While the fact that her parents allow and encourage her behavior is a likely contributor to her problems, they would likely diminish with the administering of an antidepressant or neuroleptic.

Of course, the drugs mentioned above have side effects. Prozac®, generally considered to be among the safest of the psychoactive drugs clinically used today, has been known to cause headache, tremors, dizziness, asthenia, insomnia, anxiety, agitation, sleep disturbances, drowsiness, fatigue, excessive sweating, nausea, disturbances of appetite, diarrhea, bronchitis, rhinitis, weight loss, muscle pain, joint pain, chills, sexual dysfunction, and frequent urination. In a vast minority of cases (.1%), it may cause abnormal gait, ataxia, hyperkinesia, hypertonia, lack of coordination, neck rigidity, extrapyramidal symptoms (including tardive dyskinesia), convulsions, an inability to tolerate light, myoclonus, vertigo, migraines, tinnitus, hypesthesia, neuralgia, neuropathy, acute brain syndrome, confusion, delusions, hallucinations, manic reactions, paranoid reactions, psychosis, depersonalization, apathy, emotional lability, euphoria, hostility, amnesia, increased libido, dry mouth, constipation, urinary retention, visual disturbances, diplopia, mydriasis, hot flushes, chest pain, hypertension, hypotension, syncope, heart attacks, arrhythmia, tachycardia, vomiting, stomatitis, dysphagia, belching, esophagitis, gastritis, gingivitis, glossitis, melena, chronic thirst, abnormal liver functioning, asthma, dyspnea, hyperventilation, pneumonia, epistaxis, generalized and peripheral edema, hypoglycemia, hyperprolactinemia, anemia, lymphadenopathy, acne, alopecia, arthritis, bone pain, bursitis, tenosynovitis, abnormal ejaculation, impotence, premature menopause, amenorrhea, abnormal breast growths, cystitus, dysuria, urinary incontinence, amblyopia, cysts, and malaise. However, the benefits to drug use outweigh the risks overall, especially in people as obviously pathological as those observed in this tour.

Saturday, August 1, 2009

My First FBA

I completed my first FBA yesterday. For reasons of confidentiality, I won't get too much into just what it was about, but it ran into a number of ethical issues (not the least of which is that the child in question is transitioning into Kindergarten in around a week).

That said, I'm particularly proud of one line from my suggested behavior plan, which I managed to get my supervisors to approve. The line in question is under the heading of "suggested preventative strategies" and reads:
  • Allow [the child] to engage in harmless types of self-regulatory behavior.

The plan goes on to define "self-regulatory behavior" as explicitly including (but not being limited to) rocking and hand-flapping.

Of course, this is also followed by a line stating that any behavior which poses a physical danger to the child or his peers or cannot be accomidated within classroom activities is not harmless. It does, however, state that reasonable steps to accomidate this sort of thing within said activities (such as leaving room between him and other students so that he doesn't accidentally hit them while hand-flapping or providing a rocking chair for some seated activities) should be taken.

Aaah, if only all behavior plans had that sort of line...

Edit: Corrected a minor typo (the "m" in "limited" was missing).

Psychiatric Times versus the DSM-IV

The DSM-IV is a problematic document in many ways. I've dabbled, off and on, with trying to explain the issues... but been quickly overwhelmed each time I try. There are just too many of them.

A recent blog entry by Dr. Sara Hartley over at the Psychiatric Times manages to do a far better job of this than any of my attempts. Oh, I don't agree with her about the DSM-V (which is looking more and more like a train wreck with every press release), but she does a good job of explaining some of the issues with what we have now.