The end of autism

No, the problems of suboptimal neurodevelopment are not going away. The concept of "autism" has lasted longer than I'd expected, but the assault continues ...

Syndromic autism: causes and pathogenetic pathways. [World J Pediatr. 2009] - PubMed result

... Genetic syndromes, defined mutations, and metabolic diseases account for less than 20% of autistic patients. Alterations of the neocortical excitatory/inhibitory balance and perturbations of interneurons' development represent the most probable pathogenetic mechanisms underlying the autistic phenotype in fragile X syndrome and tuberous sclerosis complex. Chromosomal abnormalities and potential candidate genes are strongly implicated in the disruption of neural connections, brain growth and synaptic/dendritic morphology. Metabolic and mitochondrial defects may have toxic effects on the brain cells, causing neuronal loss and altered modulation of neurotransmission systems...

Of course even if we abandon use of the term "autism" in quality clinical care and research it will remain tightly bound to service delivery. It will take decades to remove the concept from legal, reimbursement, educational and policy frameworks - and the slow, ponderous, archaic evolution of the DSM "classification" will keep it in psychiatry texts.

Autism will be preceded, I hope, with the end of "Asperger's" - at least in scientific writing. "Asperger's" will join "the planet Pluto" in the netherworld of meaningless terms. Within 10 years "autism" should also be replaced with a classification of neurodevelopmental disorders (the neuroconnectopathies?)

It's not mere pedantics. Names are powerful. Names determine how we interpret research results, how we predict outcomes, and, above all, how we decide which therapies to try first, and how we assign services and support. More precise names for the the complex mix of neurologic injury and repair we currently call "autism" will mean less time wasted on ineffective treatments, quicker use of what works, better targeted research, and more creative thinking.

See also:

• Be the Best You can Be: diagnostic definition
• Be the Best You can Be: Controlling nerve cell connectivity - more developments
• Autism turns into Asperger's - how did that happen?
• Be the Best You can Be: Autism: the label given to a wide and diverse variety of neurodevelopmental disorders (May 2007)
• Be the Best You can Be: Autism no more -- the end of a diagnosis (Dec 2006)
• Be the Best You can Be: Psychiatric diagnoses: 200 years behind
• Be the Best You can Be: Very annoying: the diagnostic criteria for Asperger's are not all that useful (2005)
• Be the Best You can Be: A breakthrough in understanding the genetics of schizophrenia -- and perhaps of autism too

TAGteach - dog training for special needs learners

TAGteach is a training methodology that uses the "clicker" operant conditioning approaches best known from dog training, together with positive reinforcement strategies, to teach special needs and other learners.

A Wikipedia article on Karen Pryor provides the best overview. I hadn't realized that the clicker training started out with BF Skinner in the 1930s. My primary exposure to Skinner came in the 1970s when he was terribly unfashionable, it's funny now to realize he pioneered many approaches I currently favor. He was wrong to think that humans were fully environmentally determined (seems silly now), but right that training humans is not much different from training birds, dogs, primates and dolphins.

I'm going to start following the TagTeach blog, though I do detect a few reddish flags. There's a bit too much confidence that this method solves all problems. Experienced special needs parents know there's no perfect solution to all learning and behavior problems, and that solutions come and go (often several times!).

That caveat aside, it looks like TagTeach includes some techniques here we can add to our repertoire. Consider one example from "Denise" ...

One of the many things "Robert" is working on is writing. His writing goal is to draw a vertical line....

My plan was to tag Robert for 1) touching the marker, 2) holding the marker, 3) holding the marker in a writing position, 4) touching the tip of the marker anywhere within the opening of the stencil, 5) moving the tip of the marker within the stencil, and then (hopefully, eventually), drawing a line within the stencil...

... he tried to take a juice container from the counter so I knew I had access to something he wanted.

So: I gave Robert a sip of juice and tagged him. Then I showed him the marker which he took and threw across the room. I tagged him as soon as he touched it, ignored the throw, and gave him a sip of juice...

This scenario illustrates the use of positive reinforcement (juice for Robert, treats for a dog), stepwise teaching (almost always a good idea) with victory at each step, extinction (ignore the thrown marker) and using the click to mark success and "stop the clock".

Nice example.

Thanks BK for the referral!

See also:

• TAGteach: Basics Article #1: TAGteach - Get the Point!
• TAGteach: Basics Article #2: Give Them What They Want
• TAGteach: Basics Article #3: Peer Tagging
• TAGteach: Basics Article #4: Incorporating TAGteach into Your Own Lessons
• TAGteach: Basics Article #5: Incorporating TAGteach into Daily Routines
• TAGteach: Basics Article #6: Using TAGteach to Get and Maintain Focus
• TAGteach: Introducing TAGteach: Lessons Learned
• TAGteach: Using a Verbal Marker
• TAGteach and Autism - Skill and Faith
• Changing behavior in children: Kazdin for most and what we do now
• Training exotic animals, husbands and difficult children

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Brain changes related to intense remedial reading programs

Remedial reading programs are common - but I don't think there as intensive as this paper published in Neuron ...

White Matter and Reading in Children - Health Blog - WSJ

... Researchers found that kids who were weak readers fared poorly on a common measure of white matter in a key region of the brain. But after 100 hours of intensive reading instruction, the kids showed significant improvement in white matter (and in reading). Similar children who didn’t get the intensive instruction didn’t show improvement. The study included 47 weak readers and 25 strong readers, and the kids were between ages 8 and 12...

The abstract doesn't tell us much about the reading program, and the full text article is not freely available at this time. I'd love to know what program they used.

Wealth and med choice: the antipsychotics

Interesting results, annoyingly inflammatory interpretation ...

Children on Medicaid Found More Likely to Get Antipsychotics - NYTimes.com

New federally financed drug research reveals a stark disparity: children covered by Medicaid are given powerful antipsychotic medicines at a rate four times higher than children whose parents have private insurance. And the Medicaid children are more likely to receive the drugs for less severe conditions than their middle-class counterparts, the data shows.

Those findings, by a team from Rutgers and Columbia, are almost certain to add fuel to a long-running debate. Do too many children from poor families receive powerful psychiatric drugs not because they actually need them — but because it is deemed the most efficient and cost-effective way to control problems that may be handled much differently for middle-class children?...

These sorts of studies irritate me. Not because they're unimportant, but because they are relatively easy to do, they are prone to error in interpreting diagnostic data, the level of discussion is usually weak, and there's rarely any follow-up. To be meaningful we'd have to fund far more difficult and expensive ethnographic studies (aka "qualitative research"). We rarely do that.

I have two early thoughts about this particular study. The relatively trivial one concerns the "conditions" clause. This usually refers to ICD-9 coded diagnoses (sometimes DSM coded, which is a hacked offshoot of ICD-9). Since these diagnoses are crafted to meet insurance reimbursement rules they are strongly influenced by payment source. So they are not a reliable data source for this kind of study.

The more interesting discussion point concerns what is meant by "actually need them" and "cost-effective". We have personal experience, as we have one child whose consulting pediatric psychiatrist long offered the use of anti-psychotic meds. We were able to avoid their use, but only because we have relatively large resources in many dimensions. Managing some autism-spectrum/"explosive child" disorders without, or even with, the most powerful available medications is extraordinarily challenging.

Our choice to forego their use was not based on a great dislike of these medications. If we had failed we would have used them. We might need them in the future. It is rather that we had relatively great, but not inexhaustible, private resources. The differentiator was not what our insurance could pay, but rather what we by virtue of training, education, income and temperament were able to do.

No society, not even Sweden or Norway, would be able to provide similar resources to every needful child. We should expect antipsychotic medications to be used more often among those with fewer private resources.

Four times more often? That does need to be investigated -- but remember that the billing diagnostic data is suspect, and that many of these conditions have a hereditary compoment. They may impact the parents, and impacted parents will be far more common in the medicaid population (because, of course, their income will be very low).

Now that I've said all of the above, I'll switch to the other side of the debate. There are almost no medicaid psychiatrists, and even fewer medicaid pediatric psychiatrists. Heck, there are almost no psychiatrists anywhere. There is a smoldering crisis in the expert psychiatric care of poor children. I would be very interested in a study comparing the use of antipsychotic medications in medicaid American children vs. a comparable Canadian group. Even with all of the objections I've raised, I can believe this is a major contributor to the findings. We need either to pay medicaid psychiatrists far more money, or we need to find an alternative way to deliver psychiatric-type services to this population.

Motivation and performance - two versions

A son of mine doesn't do all that well on his IQ tests.

Of course that's not the whole story. He's relatively good, for example, at "rationalia"; he can solve fairly complex problems that he cares about. This "reasoning" capability is now thought to be fairly distinct from IQ, this also explains why some very smart people make very odd choices.

The "cares about" part is relevant to two recent stories.

One concerns shoelace tying. We'd made very good progress, but then he seemed to lose interest and regress. So I was preparing for a new attack when, one day recently, he started negotiating for a book he wanted me to buy him (he's a bibliophile, sometimes he even reads them). I jumped on it as a reward for what I estimated would be a 2-3 weeks of practice to achieve a goal of 5 successful ties on two on-foot shoes.

My son instead insisted he could do it immediately. Skip the training - go straight to the test. I demurred; I feared he'd get frustrated and meltdown. We worked out the details and, of course, he immediately completed the test and got the book.

The second story concerns my locked down iPhone. He's shouldn't to be able to access the web browser. Except that he discovered a back door through a generated hyperlink within a Twitter app he uses that gave him an embedded browser view he could manipulate. He's not supposed to be smart enough to hack my bleedin' phone.

I don't think his IQ tests are wrong. I do think there's a bit they don't quite capture.