A Touch of Alyricism

Dedicated to the equally fascinating topics of autistic advocacy and the 'sisterly sophistries' of radical gender feminism. Other topics may occasionally crop up. Contactable at alyric@gmail.com

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Polemicist since Grade 8

Monday, March 19, 2007

A Siren’s Song of ALF


Alf, like the Naiads Harold Doherty refers to, is a mythical creature. Alf was born initially as a fundraising slogan on a coffee cup or some such on autistics.org and there he remained until a rookie reporter for the Times wrote a rousing if hastily researched piece on autistic advocacy citing Aspies for Freedom and the ‘Autistic Liberation Front’ (Alf). Harold found the article. The thing is, Alf, properly speaking doesn’t exist. The article, however, sparked one of those tangential forays familiar to spectrumites everywhere and Alf became flesh so to speak as a joke too good to pass up. [1] As is fitting with the lofty aims of the enterprise (think Che Guevara), Alf was conceived in the superhero mould. The fact that few of the participants had access to suitable costumes was brushed aside as mere quibbling. The result is, I think, impressive thanks to the Photoshop expertise of the resident legal eagle on Autadvo, Anne.

I don’t see Alf as a nymph in reverse drag. He’s a stocky character, balding, a slight paunch and a belligerent attitude. He’s not the sort who would bother with vocals on the Med. Far more likely, one would think, that if the occasion were sufficiently provocative, Alf would stride up in his workingman’s boots and deliver a kick where it might do the most good. This lot comes under the heading of serious provocation:

“ Those who oppose any effort to treat, educate or heaven forbid change an autistic child for the better. Do not listen to the siren’s call”. Or…..

“ Parents who seek to help their OWN children, not the ND’ers themselves but their own children, through attempts at cures are vilified by the ND movement.[2] And….

“ They [the sirens] will not help teach him/her to speak and read and brush his/her teeth.”

It’s hard to know where to start. “Cure” is something that implies that there was a biological something to be got over. We don’t as yet have a biological anything that points to the aetiology of autism and therefore an unequivocal path of intervention. We do know that there are a lot of autistic children who were apparently ‘cured’ with a variety of different treatments including biomedical interventions, chelation and ABA. Who to believe? I think no one, at this point in time. Anyone promising ‘cure’ had better take note of this article, which points out that these kids are as autistic as they ever were, which begs the question – are middle-schoolers more perceptive than ABA therapists, chelationists and peddlers of biomedical nostrums?

I think there is a case to be made that taking the ‘medically necessary’ path to clamouring for funding for interventions for autism may have been tremendously short sighted. It’s just too easy to shoot holes in the argument and that’s without getting into the demonisation of the entire spectrum to up the pity factor as far as possible, which has some interesting consequences - like wrecking your child’s future in advance, so why did they bother in the first place.

The argument for ‘treatment’ is better than cure but again, no one that I know of is against treatment per se. The whys and the wherefores however, might be up for debate. Though why that should incense Harold is mystifying. Surely if he’s pushing the position that his ABA should be mandatory, note, not optional, then he’s going to get a debate, like it or not. Best to start here with the things that Harold is convinced that some people don’t want autistics to learn, like to speak, to read and brush their teeth. It a pretty good list on the whole because it covers most of the situations, where to put it bluntly ABA would be in my view, not necessarily the optimal method for achieving one’s goals.

Dr Morton Ann Gernsbacher of the University of Wisconsin has this wonderful little article laying out beautifully the difference between speech and language. There is one. Just because you can’t say it, doesn’t mean you don’t know it. Speech is merely the physical manifestation of language. While it may be the most convenient form of communication, it is not the only means by any stretch of the imagination and for those who have difficulty in the production of speech, it may well be that it is a form of apraxia - the mind is willing but the muscle is weak. No amount of M&Ms will remedy this situation. What one hopes for is a therapist with enough know how to recognise that situation and how to remedy it. If this is an otherwise normal kid, the therapist would most likely be a speech language pathologist. If this is an autistic kid, the therapist could be an ABA trained therapist. The interesting thing about ABA therapists is that their academic background does not qualify them for a Bachelors or Masters in Science. There’s not enough Anatomy, Physiology, Neuroscience etc in their academics so they are awarded Degrees and Masters in Arts [3]. This is a serious issue and what, I wonder, are FEATBC and assorted affiliates about in mandating a therapy as ‘medically necessary’ when the therapists have such a dearth of biological knowledge.

The other consideration with language remediation is the proliferation of Verbal Behaviour (VB) programs. The application of behaviour analysis principles to the acquisition of language has no empirical support in the literature as Mark Sundberg pointed out as recently as 2005. The manufactured jargon of it was tackled rather nicely by Noam Chomsky in 1959. Here’s what he had to say about the mand in light of behaviour analytic logic:

“a speaker will not respond properly to the mand Your money or your life (38) unless he has a past history of being killed.”

Why a rational human being would choose ABA to remedy a deficit in speech is lost on me. The basis of ABA is not nearly as sound as its practitioners make out, but I’m not about to repeat myself here. On a brighter note, consider this from jypsy as a sterling example of how to tackle problems in communication. It’s a beaut and one I hope gives lots of parents encouragement to find many ways of communicating with their autistic children.

“With the consistent and enthusiastic support of Alex’s teacher assistant and parents, Alex entered Grade 1 at Gulf Shore in September 1993, with the ability to use all of the following means of communication—sign language, gestures, Canon Communicator, picture communication symbols, infrequent vocalizations and an immerging ability to print words”

The second skill that Harold insists that folks don’t want autistics to learn is how to read. His irony meter must be broken. I’m hyperlexic myself and this idiosyncrasy is apparently as common as dirt on the spectrum. Not mind you that the level of reading skill is at the same level of comprehension. No, it is not but I suspect that too much is made of the disparity to protect those normal folks out there. Hyperlexia aside, which is nothing more than an enhanced ability to spot patterns, there are many issues here. What do you do with spectrumites for whom language is a foreign language? One might argue that breaking language tasks down into small bits might be of benefit, but there are two problems with this approach. Primarily, there is no evidence whatsoever that this is the case for autistics, and I might add somewhat forcefully that ABA is never going to contribute to the answer. Secondly, breaking things down into small bits is emphatically, the opposite of how a hyperlexic can learn. If deciphering patterns is a common gift of the spectrum, then spectrumites need access to enough bits of information to detect the inherent pattern. That much must be obvious and it should be equally obvious that assuming that the bit by bit approach has merit may lead to an awful lot of damage, given the ages at which this intervention is used.

This bit by bit approach to tasks is I think an artefact. The Skinner box for training rats and pigeons and the minimalist environments for training humans that ABA therapists use are one and the same. Pigeons are taught to perform a figure of 8 pattern by careful shaping of a series of approximations to the desired behaviour with copious amounts of reinforcement at each step. It is an assumption of gargantuan proportions that humans benefit from a similar regime and not simply for performance of a single task but for learning in general. Where is the evidence?

The third factor in Harold’s list of things that some folks would not like autistics to learn is cleaning their teeth. This skill one could postulate as the exemplar of a whole range of similar skills and the sort of thing for which ABA might truly be useful just so long as there are no confounding biological factors including sensory hypersensitivity. It is fact that contrary to the testimony of autistics, ABA takes no account of the effects of sensory issues such as the effect of the brush and the level of mintiness in the toothpaste as well as its texture (is this more or less burning to an autistic sensibility?). Sensory issues aside, I have it on good authority that for performance of a task, breaking things down into a sequence would be very beneficial [4]. The point here is that breaking things down into the component parts of a task might be important if the task has a motor component and apraxia is an issue. Otherwise, who knows?

It should be clear by now that I don’t have much of an opinion of ABA and the argument that we should not be against it because that’s all we’ve got is pretty empty. The folks using this tactic tend to assume that the therapy is harmless. That is probably not true according to the current literature. The problem I have with ABA is mostly around the concept of reinforcement. No matter what the therapy or procedure that ABA therapists adopt from elsewhere, and they have co-opted just about everything in the parents handbook, they always import reinforcement. Because that’s what makes it ‘work’. Most of their undergraduate career is spent learning to construct increasingly sophisticated schedules of reinforcement. The literature says that rewards (reinforcement) can seriously undermine learning – it’s called the “Overjustification Effect” and applies to adults as well as children. When you reward performance extrinsically, you remove the intrinsic reward – the kick you get from the sense of accomplishment. Now consider the average ABA program – and the kid is in there 8 hours every day. What chance that his learning has been seriously derailed by an unrelenting regime of rewards? The answer is that we don’t know with certainty, but there’s certainly a risk there especially apparently if the rewards and this includes the whole range of food reinforcers, do nothing to improve the perception of competence on behalf of the learner or are perceived by the learner as controlling, which includes all of the reinforcers in the behaviourist arsenal. That’s one sort of harm.[5]

There are others, particularly of the sort that are generally unavoidable when therapy is used as a substitute for education. Note, the therapy may be utterly necessary, but the necessity does not mitigate the effects, though a lot of parents like to put a gloss on it. A couple of my favourite glossy bits are as follows.

This is a parent’s view of ABA: “a structured setting in which a trained professional can work with Jason on staged but natural terms that makes sense to him and that he can generalise to other places and times.” Nope, this is not an artificial situation, if we get to call it natural, but then so are schools. ‘There are, however, some grand assumptions and inconsistencies in that short sentence.

From the same parent: “Jason also spends about thirty minutes of the two-hour session leading the activities by selecting what he wants to do most.” The parent earlier informed us that the activities are selected by the therapist, which is just fine but this then becomes a really lousy example of promoting self-actualisation.

Harold talks about changing ‘an autistic child for the better’, a prospect that concerns me not at all, since it’s practically impossible to change anybody, though it would be interesting to speculate what exactly he means by that. This sort of rationale reminds me of Douglas Adams line: “If you try and take a cat apart to see how it works, the first thing you have on your hands is a non-working cat “ - ditto for autistic child. What is it about the child that should be changed? Is there some measure of ‘normal’ available for comparison, because let’s face it - “normal isn’t necessarily wonderful” [6]. Here’s a normal mother, a perfectly nice and loving parent I might add talking about her clever autistic daughter.

“Every single thing she knows, she learned from ABA. This is fact. Except for the things that seem to be her gifts. She spelled words with refrigerator magnets long before ABA therapy. She plays the piano almost in spite of ABA therapy. She taught herself to read without the use of ABA therapy. Adding and subtracting. She was obsessed with numbers and sequences of numbers before ABA.”

Her critical thinking skills may be normal but I wouldn’t want anyone else to learn them.

What is truly baffling about this paragraph is the complete disregard for a lot of learning –Why? And the substitution of ABA - for what? The question needs to be asked. Why couldn’t the therapist or the parent latch on to the ways this kid has so obviously demonstrated learning – real learning, no facsimile and use that tried and true method to have the child learn whatever else they think the child needs to learn? After all, it obviously works. Strange, but this isn’t a singular phenomenon. Michelle wrote a great piece on the above and added the testimony of a Canadian MP. Same thing, a clever child learnt all sorts of things but take a look at what this bloke considers the acme of learning goals?

“He's now one of the most amazing kids -- he will look you in the eye and he will understand you when you ask him to do something.”

Imagine the outcry there would be if this philosophy was applied to the educational system. Autistic kids get a different standard and there are, I suspect, one large and a multitude of little reasons for that. The major reason is that what the autistic child does not do and what Mr Lake referred to specifically is ‘look you in the eye’. In other words there is no automatic emotional response or acknowledgement of the parent in a way that the parent would interpret as such. Every ABA program out there starts with the teaching of eye contact on the principle that joint attention and compliance, both signalled by eye contact, are the keys to learning. They may very well be, for a typically developing child, but we have it on very good authority that this may not at all be the case for autistic children, far from it. It is becoming quite clear that autistic perception is a different breed of normal and that by and large it is super sensitive. The face is apparently such a busy landscape that paying attention to both it and doing anything else simultaneously may be impossible. Pushing for this sign of normal may be the worst thing you could do, no matter that it fulfils an emotional need of the parents. One could conclude that the towering edifice of ABA therapy is built on a total lack of empathy. Empathy is, after all, the ability to imagine things from someone else’s perspective.

So there it is. I am not ant-ABA, which smacks of blind opinion with nothing much in the way of foundation, so much as very critical of it. Something that completely escapes the zealots and idealogues like Harold, is that things don’t change unless there’s a concerted push. So a therapy like ABA, which doesn’t have an empirical leg to stand on, is propped up and continues to be propped up by parents traumatised into overlooking its gross deficiencies for lack of an alternative. At least that’s what they’re led to believe. Though it needs a fair amount of drastic surgery to make it a better fit for autistic learning and sensibilities, it has some things going for it, like structure and single therapists rather than processions of them, making the environment more predictable. It would be better if the structure imported what we know of the learning and perceptual styles of autistics and ABA is not well suited to learning from other professional areas – too insular by far and they aren’t scientific so they’ve always got that internal handicap. It makes the parents feel that they are doing something. It’s great for the kids that the parents now have ‘expectations’, whereas before it was mostly worry.

As for the ‘canard’ of doing nothing, I’m fairly amazed that Harold threw that one into the ether. But that’s a lawyer for you. If you don’t have the facts, play the person. It usually obfuscates the issues for a while. But this is not a court of law with a memory span limited to the case in question. Not at all a good strategy as we know from experience, with a great tendency to backfire.

End Notes

1. Poor Harold. I doubt that he’s capable of understanding that lots of folks might find the concept of a liberation front, with all the sequelae of power plays, prosetylising, slogans and propaganda, faintly ridiculous. But then he hasn’t had the benefit of DKM’s wisdom. Here’s David K March on a very similar concept – Aspergia.

From what I can see, this "Aspergia" thing has a 350-degree

blind-spot. It's self-absorbed, self-indulgent, and reckless in its potential effects for those of us who have no choice but to function in NT society. I don't want to be "represented" by these people any more than I want to be "represented" by Dr. Skulldug Fraudulini, Psy.D.”

Frankly, if there were such a thing as an Autism Liberation Front, it’s not likely that I’d be among the membership.

Editorial note: The link to the pic of the ALF was removed temporarily until I checked that it would be OK to provide a link. It is in the public domain.

2. There is no person alive who could be said to be an ND’er, unless you happen to believe in multiple personalities, which I don’t. A single person cannot be neurodiverse.

3. This is worth a post all on its own. I was thunderstruck, appalled, amazed and a whole lot of other adverbs to find just how unqualified ABA personnel are to deliver any kind of therapy involving biological attributes.

4. Amanda Baggs of the blog ballastexistenz said to me once that this was important for her, so I would guess that it is important for a lot of autistic folks though maybe not everyone of them and maybe not for every task. I’d like to go back in history and unearth Tolman, who made the very important distinction between learning and performance.

5. Consider the reports of parents about their children falling apart without their ABA program. That could quite literally be true. The thing about etching new pathways in the brain, rewiring, that ABA practitioners like to allude to, is that some paths are rather easily laid and very difficult to eradicate. This is pure speculation, but I did wonder when I heard some of the reports. Addiction medicine tells us that addiction, correctly speaking is the etching of the dopaminergic pathways in the reward system of the brain. Specialists recommend drugs like naltrexone to assist the withdrawal phase. If, as seems quite plausible, these kids have become addicted to rewards, then perhaps they need medical assistance to get over it.

6. Dinah Murray’s line.

5 Comments:

Blogger abfh said...

A single person cannot be neurodiverse.

Very well said. Neurodiversity is an attribute of the human species as a whole, like racial diversity and gender diversity.

That superhero picture cracked me up. I wonder if Harold knows that the Autistic Liberation Front is now a discussion group on Second Life. I'm not involved with SL, but I think that's a great place for it, anyway. I wonder if Harold would get the joke if someone sent him an invitation to a meeting. Think he'd panic and write another apocalyptic post?

7:21 AM  
Blogger jypsy said...

Thanx Alyric but... I thought it was decided that pic wasn't for public consumption...

9:35 AM  
Blogger Alyric said...

Could be right jypsy, but this pic is out there on the web. I'll ask Anne. In the meantime, I'll take out the link and put in an explanation of some sort.

4:36 PM  
Blogger Jannalou said...

I didn't really think much of it before, but I remember being told once - I think by the first ABA consultant I worked under - that autistic kids learn wholistically, and the point of ABA was partly to teach them to learn in smaller chunks.

8:04 PM  
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