Lack of Drama?

First, a quick confession to make: I haven't seen Adam yet. I very much want to see the movie, but haven't had the chance due to other events in my life.

That said, I was reading the salon.com review of the movie, and was particularly struck by certain sections:

Autistic and Asperger's characters in movies are only beginning to move beyond the "Sidney Poitier phase," in which members of previously despised or misunderstood minorities are presented as symbols, saints or seers -- whose most important function is to provide other, more relatable and "normal" characters with the opportunity for moral and spiritual growth.

and

I understand that filmmakers are caught between a rock and a hard place in depicting this issue. If you make a thriller in which a serial killer or a child molester just happens to be a person with Asperger's, it would be seen as resuscitating ugly and untrue stereotypes. So instead we get a subdued, minor-key weeper, utterly conventional and glum, in which an Asperger's/non-Asperger's couple teach each other valuable life lessons.

The thing is, there's no shortage of potential for good movies with Aspies (or even all-out auties) as major characters. I'd love to one day see a movie (dramatized or otherwise) about the founding of ANI or the ASAN. Hollywood wouldn't even have to dramatize them much (except maybe for "believability"!) to get a good, if quirky, film out of either.

Of course, the two movies would necessarily be very different in tone -- ANI is very much a community-building organization and its story would be much more of a heartwarming, "feel good" movie than the ASAN's (which, by contrast, is very much an "dissatisfied underdog(s) try to change the world" story).

Perhaps a story of someone just going through life, dealing with constant descrimination? Voice-overs are excellent tools for narrating a character's thoughts, even if the actor "can't speak" about their opinions "on-screen". This sort of film could be excellent in exposing the ways our society subtly (and often not-so-subtly) discriminates against autistics.

I could go on and on... but, in the end, I know that I'll never make these films. I'm a researcher at heart, not a filmmaker.

On the other hand, there are others who I hold great hopes for... although I doubt that any of the above will be the movie(s) to show a true image of autism to the world.

I wouldn't hold great hopes for someone if I didn't have confidence that they could come up with better ideas than I can, now would I?

Huffington, woo!

After viewing the latest bit of quack-promoting stupidity at the Huffington post, I felt compelled to comment for some reason. I'm not quite sure why -- it's harder to take the author's ramblings seriously as an argument for her favored cause than it is to take Treevenge seriously an argument for abolishing Christmas.

Or, in other words, her rant is a pure appeal to emotion and a blatant pity ploy. I'm feeling particularly unsympathetic to those at the moment.

I wish parents would stop the "oh woe is me, I have an autistic child! Look at how I'm suffering!" ploys -- not only does this help perpetuate the environment of desperation that's feeding scum like the Geiers and Eisenstein, but is also actively encouraging harmful parental attitudes in ways that others have expressed far better than I can.

The fact that those selfsame autistic kids that they're complaining about are generally less than sympathetic to their whining is quite unsurprising. This stupidity regularly kills people like us.

One particularly nasty piece of her little rant, however, deserves specific attention:

One of the flimsy claims the insurance lobby makes for excluding autism is that its treatments are not proven. However, there are now hundreds of children who have recovered through IVIG, diet and chelation therapy. Further, there are thousands of cancer patients who die each year despite having received costly "medically proven" chemical treatments. The difference? There are ten thousand times more children with autism than cancer, and ten of thousands more coming down the pike each year who the insurance lobby don't want to treat. This is a tidal wave epidemic that government and society can longer ignore. As a champion in autism Rick Rollens often says: "Autism is the fire at the door."

Rick Rollens? A "champion in autism"? We're talking about the same piece of scum, right? Okay, so at least a few of his actions have shown some level of common sense, but that hardly excuses his actions over the years. We're talking about a piece of work who's referred to the existence of some of the people who I respect most in the world, the existence of people who I consider friends, and the existence of people like me as "this plague of a disease". We're talking about a guy who was instrumental in founding an organization dedicated to convincing our parents to torture us.

And that's hardly the most outrageous or offensive item in that paragraph. The blatant use of the whole autism/cancer thing is so unspeakably offensive as to be damn near unprintable. These are the idiots who call us insensitive?

I'm not even going to dignify her so-called "argument" using that analogy with a response. It's just too damn stupid.

I will, however, address the following:

One of the flimsy claims the insurance lobby makes for excluding autism is that
its treatments are not proven.

Actually, there is one proven "autism treatment", one thing which is consistantly related to better outcomes in every study I've read (that looks for it, anyway). The available evidence even suggests quite strongly that it's a causal relationship.

No, it's not chelation (of which the most complementary thing I can say is that it's less nasty than some of the other quackery out there). It's not megavitamins. It's not the mystic healing power of horses.

It's good, old-fashioned education... and no, I don't mean "special" education. Somehow, I don't see parents complaining that insurance doesn't cover it.

I do, however, see them ripping their hair out over the frustrations involved with IEP meetings. Given the level of psychosocial stigma that morons like this woman are perpetuating, every parent trying to get decent services for his or her child should be cursing her name.

And for the insurance companies not paying for quackery... seriously, lady. Could you imagine if emergency rooms were run that way? They only pay for evidence-based medicine for a reason!

Unemotional?

When I was a child, I used to laugh at all of the kids complaining about the generation gap between them and their parents -- my father is older than most of their grandparents. While some of my peers grew up hearing war stories about Vietnam, the ones I heard were decidedly different. You see, my father's eighty-eigth birthday is in a few months. He took time off from college to fight in World War Two.

Now, however, he's in the hospital. About an hour and a half ago, I found out the results of the latest tests. Simply put, my father is suffering from progressive heart failure.

When my mom told me this, I didn't know what to say. I've always known that Dad was old. Frankly, it's been rather hard to miss... but he's always been so energetic, so healthy, that the natural implication never really settled in, emotionally speaking.

Now, though... I keep thinking back on the times we spent together, what Dad has always meant to me. He isn't perfect. He's human. But... he's my father. I love him.

Mom didn't need to tell me what the doctors said about prognosis and the like. I know damned well just what the diagnosis means... especially to someone his age. Fortunately, they caught things relatively early on and think that they can do a number of things to help.

I want to go visit him, but I don't want him to see what this news has done to me. I know I won't be able to completely hide things from him, but I can certainly try to compose myself and do it... and if I didn't try, I know that I'd never forgive myself.

I'll be doing exactly that in a few minutes.

It's things like this that make me laugh at the fools who say that autistic people don't have emotions or can't care for other people. It's harder to find a more baseless stereotype... but it keeps perpetuating anyway. I'd normally try to find some sort of witty retort or other statement, but, frankly... I'm not in the mood. I have a visit to make.

Farley et al., 2009

Farley, Mahon, Fombonne, et al.'s recent article, Twenty-year outcome for individuals with autism and average or near-average cognitive abilities is a pretty interesting read for a variety of reasons. It certainly wasn't free of interpretive bias, and sampling bias was a major issue as well, but... still interesting.

First, to take care of the most blatant aspect of the sampling bias. Of the fourty-one people who the authors collected data on, thirty-eight (or 93%) were Mormons -- or, more specifically, members of the Church of Jesus Christ of Latter Day Saints.

It bears repeating: all but three of the respondants were members of that church. Nothing is said about the religious affiliations of those three participants.

Of course, the study's authors admit this... and then interpret it as potentially biasing the study in favor of superior outcomes. The authors don't even acknowledge the fact that the outcomes in their study could just have easily been biased in the opposite direction.

Anyway, there's a lot of interesting stuff in the paper. For the entirety of it, I suggest reading the paper itself -- there's no real substitute for that. It's worth noting that none of the intelligence tests used are valid for use on autistic individuals, however.

One heading of particular interest, however, was the section on the participant's history with law enforcement. Of the participants, fourteen (or 34%) were found to have a history with law enforcement. This almost seems to support the "autistic criminal" stereotype until you take a closer look.

You see, what's really interesting is just how this is defined. Two of those cases "occured only in early childhood".

Umm... yeah. I'm not quite sure what to say to that.

Moreover:

Behaviors resulting in intervention by law enforcement officers included performing maintenance tasks in restricted areas without any formal relationship to the business; observing children in public from a short distance; engaging in dangerous driving behavior under instructions from peers; sexual behavior aimed at a peer with developmental disabilities; stalking peers in pursuit of friendships; running from a police officer in a reportedly suspicious manner; and failing to pay parking tickets.

So, the participants engaged in inappropriate Good Samaritan acts. Yeah, I can see this happening.

At least one accepted a dare from a peer that involved dangerous driving practices? Good God, an entire generation defined their identy by that sort of stunt! NTs do that sort of crap all the time!

It'd be nice if they gave us figures on the frequency of that, though.

Similarly, the bit about sexual behavior aimed at a peer with developmental disabilities? There's more than a bit of ambiguity there -- for one thing, just what sort of sexual behavior? Was the peer a willing partner in this? Given some of the stuff I've seen, I wouldn't be terribly surprised if this was a case of parents using the police to bust up an autistic romance. Running from a police officer in a reportedly suspicious manner is equally suspicious in and of itself.

And really. "Failing to pay parking tickets"? Again, no further details were provided. Was this a deliberate thing? Was it a matter of inadequate supports leading to problems caused by executive functioning issues? Just how many tickets were involved? This really doesn't provide us with much.

In short -- that neat little statistic tells us almost nothing... and, again, kids whose only history with the police was getting separated from their parents and getting brought back by a police officer as a small child really don't deserve to be counted in the same statistic as those with adult criminal histories. The construct validity here is apallingly poor.

Actually, though, there was one thing that stood out. None of the issues listed were violent crimes... or even "classic" criminal behaivor. None.

Well, maybe the sexual behavior one, but that's so incredibly meaningless as it's written that it could be pretty much anything.

Of Mothers and Mothers

There is nothing I hate hearing more than dichotomous theories about people -- that is, any attempt to divide people into two groups and neatly pidgeonhole people into one group or the other. That said, I can't deny that any community has a homogenizing effect on the people in it.

This is also true of the various groups and camps of the parents of autistic children... except that they're also part of a larger community. Between member interchange, between-group exchanges, and the emphasis on support, a number of truly absurd and harmful ideas have become nearly mainstream.

It doesn't help that the quacks take as much advantage of this as they can, making as many quick bucks as they are able... at the expense of the children who they're being paid to help.

Often, however, the attitudes that these "biomedical" scams promote are more harmful than the treatments themselves... which is quite impressive given just how harmful some of them are.

Recent posts at Age of Autism have stirred up something of a storm on this topic. Admittedly, it's a bit of a tempest in a teacup -- which is to say that it's pretty darn small as storms go -- but it already produced a nice little kick in the pants for the AoA idiots.

Said article is one of the most eloquent expressions of what's wrong in the community of parents of autistic children that I've ever seen. Way to go, Michele!

Edit 7/21/2009: See here for another excellent response.

A Brief Guide to Some Autistic Resources on Autism

At my practicum today, I got into a brief discussion with someone about autistic writings on autism (and related issues) and the sheer quantity of autistic educational resources on the subject available online.

In the end, I promised her a brief guide to the sites and such that I thought she should know of. This is by no means complete -- it's just a few of the resources I could think of off the top of my head.

Autism Network International was the first real autistic autism organization and, to this day, remains the centerpiece of the autistic community. While rather plain, the ANI website contains a good bit of useful information, notably including a great deal of information on ANI's annual conference/gathering, Autreat.

ANI's coordinator, Jim Sinclair, also used to have a personal website with some very significant articles -- including several of the seminal works of the autistic community. While it's no longer on the 'net due to the actions of its web-host, it's still easy enough to get to those resources thanks to the Internet Archive.

Other notable autistic organizations include AutCom, the ASAN, and GRASP. Of them, I'm associated with two (AutCom and the ASAN) and have mixed feelings about the third. Despite this, it cannot be denied that GRASP has a pretty large set of articles available, many (if not most) of which are very much worth reading. AutCom also has an article library, but my opinion on the matter is that said library is very much in need of updating and housekeeping.

Autistics.org hosts a wide variety of resources, as well. While their resource library is the most obvious (even if it needs updating and expansion), it's hardly the only one. Amanda's non-site, ISNT, and even Amanda's blog are all excellent reads.

Speaking of blogs, the Autism Hub is the best place I know of to find autistic bloggers. Keeping an eye on the Hub's update lists (and the articles) means effectively keeping an eye on the back-and-forth discourse of the autisic community... or at least a notable subsection of it.

Neurodiversity.com, hosted by Kathleen Sidel, contains an extensive collection of indexed links to resources on pretty much any autism-related topic you can think of.

Up in Canada, autistic autism researcher Michelle Dawson hosts a site called No Autistics Allowed. Beyond her excellently-researched, extremely thorough commentary on some of the issues with ABA, NAA also has a number of articles on... well, quite a bit, notably including a lot on the Canadian government and her dealings with them.

And, of course, that's just the beginning.

Edit: In my initial posting of this, I forgot to mention this list. Very, very extensive list of links. Admittedly, the list focuses on a single issue, but many, if not most, of the resources it links to don't.

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.

A Lecture

Today, the practicum students at my site had a training. Officially titled, "The Behavior Communication Connection" and subtitled "The Nature of the Connection", it was essentially a lecture on the differences between modern ABA-based techniques (notably including PBS techniques) and the crap that some idiots practice and have historically practiced.

This isn't to say that modern ABA-based techniques are perfect. It's to say that they're better than the ethics-challenged stupidity that some people equate with them. Now if only we could get people to stop practicing said ethics-challenged stupidity...

In any case, other than one slide, it was a fairly decent presentation... although I will admit that I made my fair share of points and am evaluating it with those incorporated.

That one slide was entitled, "Why do Students with Autism have Difficulty Communicating?" Leaving aside the person-first formulation (and why is it that the people promoting this sort of language never ask the people with disabilities themselves? It's not like we've been keeping our opinions secret...), the answer was quite revealing.

Specifically, it stated: "Children with autism do not have the skills of typically developing children that assist in the acquisition of communication skills."

The most revealing part of this is the fact that it proceeded to give ten examples. Of them, six were false and four were drastic oversimplifications.

Autistic kids lack the ability to maintain attention? ... yeah. Right. This is even funnier given that the next item states that autistic kids lack the ability to shift attention. The contradiction should be pretty obvious.

Autistic kids lack the ability to take the perspective of others? Disregarding the fact that this is a skill which neurotypical kids "lack" relative to adults, my experience has been that autistic kids are quite good at taking the perspective... of other autistic kids. The fact that they can't take the perspective of non-autistic kids is something that's a given, but neurotypical kids can't take the perspective of autistic kids, either. Issues of this sort happen cross-culturally, too. I mean... people from other cultures blow the tiniest things out of proportion. What the heck is the big deal with accidentally showing someone else the bottom of your shoe?

Yes, that's sarcasm.

The next item, that autistic kids have overselective attention, is so rediculously oversimplified that it's not even funny. I've commented on this before, but autistic sensory systems process data in ways that are completely different from the ways that non-autistic sensory systems do so. Of bloody course they're going to find different things salient!

This is followed by a statement that autistic children lack in the ability to use new experiences to relate to previous experiences. Umm... no.

The slide continues along these veins for a while. I would, however, like to answer the question from my own experience.

Why do autistic students have difficulty communicating?

Because the people they're trying to communicate with ignore them when they try.

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.