Be the Best You can Be

Please don't feed the nasty man

2008-07-21T18:19:00.000-07:00

Imagine there exists a nasty man of limited insight who's income depends on national attention.

Isn't giving him attention like feeding a bear with a bad tooth? He'll just come back for more.

Lessons from gene deletions affecting learning and autism both

2008-07-18T10:47:00.000-07:00

On the one hand, this article annoyed me. It demonstrates the usual confusion between association and causation, and it extrapolates from an exotic genetic disorder to the much larger group of children labeled as "autistic".

The reasoning errors, incidentally are not the journalist's. They come from the researchers. Researchers are as prone to this fallacy as anyone else.

On the other hand, it has some interesting hints. So I'll delete the worst parts, and focus on the interesting hints.

Autism Genes That Control Early Learning: Scientific American

A new genetic analysis of large, inbred Middle Eastern families... pinpointed six new genes that may contribute to autism ....

They report in Science that all of the linked genes are involved in forming new and stronger connections, called synapses, between nerve cells in the brain, which is the biological basis of learning and memory formation...

The researchers studied 88 families in which one or more children had been diagnosed with autism, and the parents of each autistic child were cousins. Marrying second and third—and even first cousins—is not uncommon in the Middle East...s

The team found a total of six mutations affecting genes that had previously not been linked to autism. The mutations came in the form of deletions, where part or all of both copies of the genes were missing in a child with the disorder. All of the genes are known to be involved in parts of the same process: creating and strengthening synapses...

...Walsh says the team believes these deletions—which in most cases found here only remove some, but not all, of the DNA that makes up a gene—may mean that the genes can regain some of their normal function. In fact, some of these genes may just be switched off. "This presents the possibility that in some kids we could get the gene going again without necessarily having to put it back in the brain," he says...

...Walsh notes that many children diagnosed with autism tend to show vast improvement when they are placed in environments that allow them to practice learning repetitively. He says that these activities essentially train the neurons to make up for their lost function.

From a science perspective it's another advance in studying neurodiversity, and it fits in the context that large numbers of "normal" people have significant neuro gene deletions.

From a parent's perspective, I was struck by the idea that these neurons can form connections, but they take a lot of persistence to form. In particular, highly repetive learning.

It's hard to do that kind of teaching in a conventional classroom. It bores most students and teachers to tears. This fits with our experience in trying to teach reading however ...

Guanfacine for ADHD in children with autism -- and a recent literature report

2008-07-15T12:43:00.000-07:00

Guanfacine in Children with Autism and/or Intellec...[J Dev Behav Pediatr. 2008] is basically reassuring. Guanfacine substantially improves ADHD behaviors in children with autism and similar cognitive disorders. It doesn't have other behavior score benefits. Side-effects were as expected.

I have a standing PubMed search on Guanfacine because it's a long used medication that was recently found to be an "alpha 2A adrenoceptor". That's making it the subject of extensive research, such as:

Guanfacine (Tenex) is not FDA approved for use in ADHD, but the recent crop of articles expect approval shortly. It has been widely used for several years. Our son has taken it for about 2 years.

The challenge is that this medication will be taken for a very long time by very large numbers of children, often in combination with Ritalin. There are sure to be surprises, both good and bad. We don't know it nearly as well as we do Ritalin.

Games for focal abilities: Set and visual perception

2008-07-14T18:26:00.000-07:00

Last week I wrote about focal abilities in the context of cognitive disability, and implications for employment in a distributed world. I was partly inspired by a friend who knew of an autistic child who was very good at the card game "Set":

Be the Best You can Be: Employment for special needs persons – hints from the classification of galaxies

...These [larger] disabilities are often offset by domains of relative, and even, absolute, strength, such as rapid pattern recognition in the card game “Set”, or rapid discrimination of large amounts of visual data. Tasks similar to the Galaxy Zoo classification, but with payment attached, might become an option – in time...

Since Child A has almost savant abilities to locate family members in a crowd, Andrew suggested I try him with "Set" -- a "game of visual perception".

The directions seem complex at first. Players choose groups of 3 cards from a larger set of 12 in which each of four attributes (color, shape, shading, number) are either identical or unique. I wasn't sure my son would get the game.

He saw me practicing as I thought about how to teach this, walked over, and started stamping out sets.

I guess he's played this before.

I'm not sure he's brilliant at Set, but for now he's much better than I am. Unsurprisingly, given his ADHD, he doesn't have much patience for the rules. He prefers to lay out all the cards, and pick out sets without keeping score.

It's great to have a game he can excel at, even though we'll need to be flexible with the rules.

Employment for special needs persons – hints from the classification of galaxies

2008-07-08T12:09:00.001-07:00

The Galaxy Zoo uses humans as “computers”. We’re very good at grouping things by resemblance, so hobbyists are used to group images of galaxies into “types”

... With your help, we've been able to collect millions of classifications, with which to do science faster than we ever thought possible...

…If you're already familiar with basic Galaxy Zoo analysis, click here to read the instructions and click here to take part. Galaxy Zoo 2 will go live in the near future featuring a much more detailed classification system, while further off we plan GalaxyZoo 3 with lots of exciting new data...

One amateur astronomer made an important original discovery.

Some persons on the autism spectrum with a personal interest in astronomy might be interested in the Galaxy Zoo today, but from a special needs perspective I’m mostly interested in where things might go in the future.

There will likely be tasks that humans do much better than computers for at least a few years. A few decades, I hope.

Some of these tasks will be open to people with focal cognitive disability. These disabilities are often offset by domains of relative, and even, absolute, strength, such as rapid pattern recognition in the card game “Set”, or rapid discrimination of large amounts of visual data. Tasks similar to the Galaxy Zoo classification, but with payment attached, might become an option – in time.

Incidentally, the first “computers” were humans. Even into WW II men and women did computational tasks by hand and were known as “computers”. (Engineers, of course, used slide rules until the late 1970s, but they weren’t called “computers”.) So this is a “back to the future” story.

Does Ritalin specifically target the prefrontal cortex?

2008-07-05T19:48:00.000-07:00

I've long been impressed by the unexpected safety of Ritalin (methylphenidate). It's rare for a medication to both alter brain function and have low toxicity, yet many years of use have given us little bad news.

Now FP reports on a study that suggests why Ritalin is both safe and effective for ADHD. It might not the drug we thought it was ...

FuturePundit: Research On Ritalin Mechanism Of Action

... In a paper publishing online this week in Biological Psychiatry, University of Wisconsin-Madison psychology researchers David Devilbiss and Craig Berridge report that Ritalin fine-tunes the functioning of neurons in the prefrontal cortex (PFC) - a brain region involved in attention, decision-making and impulse control - while having few effects outside it.

... Mounting behavioral and neurochemical evidence suggests that clinically relevant doses of Ritalin primarily target the PFC, without affecting brain centers linked to over-arousal and addiction. In other words, Ritalin at low doses doesn't appear to act like a stimulant at all.

Ritalin at lower doses appears to cause the prefrontal cortex (PFC) to be more sensitive to signals coming in from the hippocampus.

When they listened to individual PFC neurons, the scientists found that while cognition-enhancing doses of Ritalin had little effect on spontaneous activity, the neurons' sensitivity to signals coming from the hippocampus increased dramatically. Under higher, stimulatory doses, on the other hand, PFC neurons stopped responding to incoming information. "This suggests that the therapeutic effects of Ritalin likely stem from this fine-tuning of PFC sensitivity," says Berridge. "You're improving the ability of these neurons to respond to behaviorally relevant signals, and that translates into better cognition, attention and working memory." Higher doses associated with drug abuse and cognitive impairment, in contrast, impair functioning of the PFC...

I wonder if this will change thoughts about optimal dosing of Ritalin. I would very much like to see animal models studied to look for tolerance of Ritalin's alleged PFC effects.

When ADHD is an adaptive advantage ...

2008-07-05T12:09:00.000-07:00

First, the news article (excerpt from FuturePundit: Hyperactivity Gene Helps Nomadic Tribesmen?). Then the anecdote ...

.... Kenyan nomads do better with an ADHD gene whereas those who have converted to settled living do worse with this same version of the DRD4 gene.

A propensity for attention deficit hyperactivity disorder (ADHD) might be beneficial to a group of Kenyan nomads, according to new research published in the open access journal BMC Evolutionary Biology. Scientists have shown that an ADHD-associated version of the gene DRD4 is associated with better health in nomadic tribesmen, and yet may cause malnourishment in their settled cousins....

... A study led by Dan Eisenberg, an anthropology graduate student from Northwestern University in the US, analyzed the correlates of body mass index (BMI) and height with two genetic polymorphisms in dopamine receptor genes, in particular the 48 base pair (bp) repeat polymorphism in the dopamine receptor D4 (DRD4) gene.

The DRD4 gene codes for a receptor for dopamine, one of the chemical messengers used in the brain. According to Eisenberg "this gene is likely to be involved in impulsivity, reward anticipation and addiction". One version of the DRD4 gene, the '7R allele', is believed to be associated with food craving as well as ADHD. By studying adult men of the Ariaal of Kenya, some of whom still live as nomads while others have recently settled, the research team investigated whether this association would have the same implications in different environments.

While those with the DRD4/7R allele were better nourished in the nomadic population, they were less well-nourished in the settled population...

...It is possible that in the nomadic setting, a boy with this allele might be able to more effectively defend livestock against raiders or locate food and water sources, but that the same tendencies might not be as beneficial in settled pursuits such as focusing in school, farming or selling goods...

There's a personal connection.

Today we couldn't find child B at the pool. Since he has the classic Aspie tendency to wander, we became a bit anxious.

We recruited child A, who, among other traits, has pretty severe ADHD. He also has a weird visual talent. He can pick things or people he's interested in out of a very large amount of visual input -- almost instantaneously.

I told him we needed his "laser eyes" to find his brother, and I walked behind him. Zip. In 1-3 seconds he says "B is not in the big pool". He walks to where I can barely make out people in the diving pool. Zip. "B is by the climbing wall." A few minutes later I was able to spot Child B where Child A said he was.

In our society Child A is disabled. In a hunter gatherer society, at a slightly older age, he'd walk to high ground, spot game across the veldt, then head home to await delivery of the finest cuts of meat and play with his many children. I, in the same society, would be long dead.

Adaptation is local.

Update: See also an earlier post on the same theme.

Update 7/5/08: The Economist has a more detailed review.

Road vacations: better options than you might think

2008-07-05T08:38:00.000-07:00

Vacations with special needs children can be less than restful.

We have gone with long van-bound hotel-staying road trips for years. The first years, when the children were young and our techniques were less advanced, were like hang gliding around a tornado.

We did complex real-time calculations around video length, gasoline levels, food levels, drug levels, bladder volume, local geography, local facility expectations, weather and much more.

Now it's more like base jumping -- risky, but fairly predictable.

Here's a quick (very quick) post on advantages and recommendations for our family. The reality varies from trip-to-trip as we all age and change.

On the last trip we took our dog. That odyssey also involved a very politically challenging 50th anniversary parent celebration and several different family reunions at multiple sites. It spanned two nations, maybe 2,000 miles or so. My back blew out and I needed an ambulance ride to an ED about 60% through, then spent 3 days flat on the floor of the van until I invented a rig that allowed me to sit and drive.

And yet, and yet ... the children thought the trip went well.

Which is to say that if the vacation can work for the children under these circumstances, then the arrangement is more robust than even we expected.

Vacation for us? That was a funny one. Actually, if not for my back, I'd have had fun. I think my wife actually had a good time, and even I will remember the trip fondly after a few more weeks of forgetfulness.

Advantages and advice follow. I'll ask my wife to review and expand so this may develop further.

Advantages

In a moving van, no-one can hear your child scream.
Variety (external)
Consistency and predictability (internal)
They'll never see you again
You can stop the van, you can't stop the plane.
Flexibility

Tips

Small town parks, usually by schools.
Picnic, not restaurant
McDonald's drive through. (Same everywhere)
Avoid the big interstate (rest areas on I 90)
Avoid poor/destitute/hyper-urban areas (need breaks, need space)
Audio CDs ("books on tape") - superb. Little House in the Big Woods, Hank the Cow Dog
Activity bags: small toys, coloring books"Yu-Gi-Oh" cards and "duel disks".
iPod Playlists.
Movie in pm
Rituals: breakfast in room.
Gas station BID: bathroom, snacks
Swim in AM and PM
Ideally stay with one or two hotel chains (Baymont, AmericInn, Residence Inn)
Try to maintain your usual behavioral management regiment (ours fell apart on our last trip, no doubt)

Canadian revolution in mental health understanding ...

2008-06-21T05:52:00.000-07:00

This Canadian Globe and Mail series focuses on common disorders with onset in adolescence and adulthood, but it's entirely relevant to cognitive disorders that present in childhood and at birth.

Gordon's Notes: An astounding series on mental health disorders

... astounded by their special series on mental health: Breakdown: Canada's Mental Health Crisis.

The title is misleading, there's nothing particularly Canadian about the stories. The portrayal of schizophrenia (let us honor the Bigelow family) and David Golbloom's review of the mission of the Mental Health Commission of Canada are among the best writings on mental health I've seen anywhere...

... Canada evolved the endless commission as an alternative to civil war. So the Mental Health commission may have an impact both in Canada and the US...

Canada is often 5-10 years more advanced than the US, so this is a strong indicator of cultural change that's likely to occur here -- sooner with Obama, later with McCain, but still on the way.

Autism spectrum disorders as disability vs different ability – a recent debate

2008-06-05T08:47:00.001-07:00

Writing in the Britannica blog, John Pitney replies to a Stanley Fish article …

Stanley Fish and Autism –John Pitney - Britannica Blog

In an entry on his New York Times blog, Stanley Fish wonders whether autism is just another “difference” like race or sexual orientation….

… Fish hints that autism may be a superior form of existence. “A genetic difference is often adaptive and can be regarded as an advance in the evolutionary process…

… Apparently Fish gets his knowledge of autism from another movie, Rain Man. (If you haven’t seen the picture, it portrays Dustin Hoffman as an autistic adult who can perform amazing feats of memory.) In real life, few autistic people have savant skills. Among those who do, a large portion have severe problems with other areas of life such as toilet training. It’s ridiculous to compare them to the X-Men.

Fish takes his cue from the “neurodiversity” movement, which questions whether we should see autism as a disease or disability. Like adherents of this movement, he fails to make the crucial distinction between autistic people and the condition itself…

… That is reckless. Autism is not a personality quirk. It is a complicated neurological disorder that involves the entire brain. It affects speech, language, body movement, memory, and emotion. It comes in many varieties and degrees of severity, but even the “mildest” forms are life-shaping disasters.

Fish might still object that the “disorder” label stigmatizes something that is merely a “difference.” To say that autism is just a difference is like saying lung cancer is just a different form of cell growth and that painful wheezing is just a different form of respiration.

In his play Professional Foul, Tom Stoppard writes that “you can persuade a man to believe almost anything, provided he is clever enough.” Stanley Fish is a very clever man, and other clever people will derive fleeting amusement from his comparison of autism to mutant superpowers. He will now move on, and apply his drive-by cleverness to other topics.

Meanwhile, he has done real harm by trivializing the struggles of autistic people, including my little boy.

During the 1970s there was a populist “revolt” against psychiatry. Schizophrenics weren’t mentally ill, the rebels claimed, they simply “thought differently”. They should not be strongly encouraged, much less forced, to seek treatment.

To put it mildly, this did great harm. The dark side of this meme persists in Scientology today.

Fish is so wrong on so many levels, not the least of which is a profound ignorance of how natural selection works. I think, though, as with the “don’t treat schizophrenia” movement, there’s an element of truth among the mire.

I’ve written previously about the legitimate scientific foundations for thinking about diverse minds, the fuzziness of our diagnostic categories, the astonishing prevalence of major genetic defects in seemingly neurotypical brains, and (elsewhere) about visualizing neurodiversity.

So for me Fish is mostly wrong, and Pitney is mostly right. In our world and in most conceivable worlds, the diverse disorders we crudely categorize as “autism” are severely disabling a source of sorrow and suffering for autistic person and their families. And yet, even so, there are people (electrical engineers, software engineers, etc) with traits that are highly adaptive in the modern world, even when these traits overlap to a certain extent with high IQ Asperger’s, which in turn overlaps with the most functional end of the so-called-autism spectrum disorder.

If we could “remove the autism” entirely from our children, they would be different people. Lung cancer, to use Pitney’s example, is not a part of a person. Heck, lungs aren’t a part of a person – not really. Aspects of a mind are the person, including disabling aspects. It’s not so easy to separate autistic persons from their disorder.

So if I had magical powers I’d “fix” some of the afflictions my children have – no doubt – but I would not want them to be different people. Some of the traits would have to remain – parts of the people I love – things they would not abandon lest they lose themselves.

Behavioral programs: the latest iteration of our sticker chart reward system

2008-05-26T19:18:00.001-07:00

We've evolved our reward system over about 6 years and much trial and error, so I figure it's worth passing on.

I've mentioned it briefly in the context of the behavior mod philosophy we follow:

Be the Best You can Be: Changing behavior in children: Kazdin for most and what we do now

...We've returned to using a sticker chart of about 7 columns by seven rows. Each act is rewarded with praise and a sticker, a column gets a bigger-than-average privilege (ex: 20 minutes on the Wii) or a quarter (the sibs prefer the money, of course the same system must apply to all), a full chart gets a treat or $2.00...

One particular constraint is that we have 3 children who spam the working labels from neurotypical to (for the moment) Asperger's to a a combination of autism, cognitive disability, anxiety disorder, hyperactivity, etc.

So we needed one solution that would work for all of them, and that would be balanced. Every child needs to earn rewards at about the same rate, regardless of absolute accomplishments. (We have a family, not a corporation.)

Given that constraint, and a lot of experimenting, here's the current configuration. It's worked for over a month, which is fairly long by our standards.

Children earn stickers based on individual goals. Awakening, getting dressed, and going downstairs without rousing siblings earns 3 stickers for one of the children. All kinds of acts get 1-2 stickers. We constantly look for opportunities to give positive reinforcement.
Doing 1-2 pages in supplementary home study curriculum books we use earns a sticker.
One column of stickers is good for either 25 cents or 10 minutes on the computer.
An entire chart of stickers is good for either $2.00 or a family outing to the child's favored destination (often this is lunch out -- the $2.00 is way cheaper).

It takes 5-6 days to fill out a chart. We used to give money directly as a reward, but that flopped. The stickers can be exchanged for money, that works better for us.

OS X 10.5: time limited computer access

2008-05-22T20:43:00.000-07:00

Update 5/30/08

Since my original post I installed 10.5.1 and upgraded to 10.5.3. I discovered the shortest possible setting for time limited computer access is 30 minutes (per day).

I need a range where the low end is 10 minutes.

Sigh. Apple engineers need more children.

I also don't recommend regular people install an OS X update to an existing system until the DVDs actually ship with 10.5.3 or later. My install experience was unsettling.

--
Both the Nintendo Wii and computer access (Flash based games) have been big behavior modifiers for the #1 son.

In particular, we used Wii/computer time rewards to get him dressed and downstairs in the morning. His normal tendency was to wake up his sibs, which they did not appreciate.

Combat on first awakening is a bit draining.

Problem is, he's having increasingly severe problems stopping at his allotted time. We had some success with various incentives and disincentives, but he's broken through them.

So he's off computer and Wii altogether while we reevaluate.

Which is why, despite knowing that it's still pretty buggy, I placed an order for Mac OS X Version 10.5.1 Leopard. The killer feature is that 10.5 allows parents (administrators) to set time quotas on user accounts. When the quota is exhausted, the account logs out.

I'm going to give it a try, in the context of limiting access to less enchanting web sites. If he can manage that we'll walk up the enchantment scale. Stopping is a key self-regulatory behavior, so we'd like to use this to teach him some self-monitoring skills.

It won't be easy. It's never been easy. (Ok, so baseball is surprisingly easy ...)

PS. The current version of OS X is 10.5.2, the update from the DVD version is free. We expect 10.5.3 to be released in the next week. My guess is that 10.5.4 will be quite high quality and 10.5.3 will be respectable.

Microsoft's Guardian Angel patent - a sign of next generation support

2008-05-11T07:43:00.000-07:00

The bad news is that Microsoft's lawyers consider something as obvious and inevitable as "Guardian Angel" to be patentable. America's current software and process patent laws are insane. At a minimum persons evaluating patents need to be well grounded in science fiction.

The good news is that this is something I have been hoping would emerge sooner rather than later. The value for special needs persons, including the majority of us who develop special needs in our 70s and 80s, could be enormous -- especially when combined with ubiquitous robotics.

United States Patent Application: 0080082465 (Microsoft Guardian Angel)

An intelligent personalized agent monitors, regulates, and advises a user in decision-making processes for efficiency or safety concerns. The agent monitors an environment and present characteristics of a user and analyzes such information in view of stored preferences specific to one of multiple profiles of the user. Based on the analysis, the agent can suggest or automatically implement a solution to a given issue or problem. In addition, the agent can identify another potential issue that requires attention and suggests or implements action accordingly. Furthermore, the agent can communicate with other users or devices by providing and acquiring information to assist in future decisions. All aspects of environment observation, decision assistance, and external communication can be flexibly limited or allowed as desired by the user.

Many persons with cognitive limitations can operate well under ordinary and predictable circumstances. Any disruption to routines, however, can be overwhelming and dangerous. Technology of this nature can make a broader educational, work, and personal life possible.

Thinking differently about different minds

2008-05-10T11:30:00.001-07:00

Friends and families of special needs children and adults know that (soon to be obsolete) terms like "autism", Asperger's, and "mental retardation" cover an enormous spectrum of variation.

That variation requires a customized management program to make each person "the best they can be", but we don't have the science or the people to begin designing and implementing new approaches.

Maybe we can start by realizing that all minds are different ...

What if we could see the diversity of minds?

... human brains are actively evolving now. To quote Hawks (via Marginal Revolution):

We are more different genetically from people living 5,000 years ago than they were different from Neanderthals...

Active brain evolution means lots of variation. Most of the variations are mostly marginally harmful, some quite disabling, some both advantageous and problematic. They all mean that brains are less alike than the bodies we see.

The variation doesn't end there. Brains, among other things, run minds. Minds, among other things, run memes.

Brain, mind and meme give three platforms for variation and selection to play on. It's a recipe for combinatorial variation.

So it's plausible, that if we were able to see minds the way we see bodies, we'd find a very entertaining sidewalk. Some pedestrians would be twenty feet all and thin as posts, others ten feet wide with an extra limb and a tail. Some covered in fur, others green and yellow with antennae...

When we absorb the reality that the cosmetic diversity we dislike, celebrate or ignore is only a pale shadow of the diversity of minds, we'll start "thinking differently" about how to approach the development of all minds.

From that may come smarter, better, and, yes, cheaper, approaches to making special needs minds the best they can be.

Autism turns into Asperger's - how did that happen?

2008-05-04T21:04:00.000-07:00

"Sam" (pseudonym) isn't "autistic" any more. Now he has "Asperger's".

He used to have "autism", so what happened? What was the key intervention?

Was it abstention from immunization? No, he gets poked regularly.

An alternative or experimental medication? No, he's never taken any medications (unlike his sib - we treasure medications when they're valuable).

An intense program of behavioral therapy? No, he's mostly inherited the fringes of the home built behavioral program his older brother needs.

Dietary changes then? Vitamins, supplements, abstention from gluten? Well, he only accepts a very limited diet, but it contains a reasonable amount of gluten, wheat, etc. He's finally accepted his sister's daily multivitamin, which might help avert scurvy.

A quiet, calming, nurturing home environment? *Cough*. No.

A brilliant set of therapists and teachers? Actually, we've been pretty lucky with his school teachers and he's had some very good therapists. So points there maybe.

Really, though, as you've probably guessed by now, the "transition" is due to two things:

The slow change in the definition of "autism".
The unstudied and mysterious natural history of disorders of the developing brain.

First, the change in definition.

"Sam" had significantly delayed and disordered language development, that, in combination wiht other findings that gave him a "slam dunk" diagnosis of "high functioning" autism. It used to be, "once autism, always autism", even if the subsequent course looked more like Asperger's.

Well, definitions, like species, evolve. The new fashion is to make the labels "descriptive" of the current state, perhaps as part of a recognition that we really don't know what the heck these things are beyond "developmental brain disorder".

It's this kind of change in definition that confounds naive research. It's the first part of "Sam's" reclassification.

The second part of the reclassification is "Sam's" course. In many ways he's done very well. We're happy, but how unusual is that?

We don't know.

We really don't know the "natural history", that is, the expected course, of these disorders. I've been tracking the medical literature on this topic, and there have only been a handful of studies tracking the course of children labeled as "autistic". As in maybe 1-2 half-decent studies.

We don't know if it's common to improve, we don't know if one can see pre-adolescent improvement and then adolescent regression, we don't know much at all.

It's pretty hard to study treatments of a disorder when you don't know how it usually goes!

Working memory can be improved by training

2008-04-30T19:26:00.000-07:00

In experimental subjects, which are usually undergraduates majoring in psychology, working memory can be improved (emphases mine) ...

Memory Training Shown to Turn Up Brainpower - New York Times
... The key, researchers found, was carefully structured training in working memory — the kind that allows memorization of a telephone number just long enough to dial it. This type of memory is closely related to fluid intelligence, according to background information in the article, and appears to rely on the same brain circuitry. So the researchers reasoned that improving it might lead to improvements in fluid intelligence.
First they measured the fluid intelligence of four groups of volunteers using standard tests. Then they trained each in a complicated memory task, an elaborate variation on Concentration, the child’s card game, in which they memorized simultaneously presented auditory and visual stimuli that they had to recall later.
The game was set up so that as the participants succeeded, the tasks became harder, and as they failed, the tasks became easier. This assured a high level of difficulty, adjusted individually for each participant, but not so high as to destroy motivation to keep working. The four groups underwent a half-hour of training daily for 8, 12, 17 and 19 days, respectively. At the end of each training, researchers tested the participants’ fluid intelligence again. To make sure they were not just improving their test-taking skills, the researchers compared them with control groups that took the tests without the training.
The results, published Monday in The Proceedings of the National Academy of Sciences, were striking. Although the control groups also made gains, presumably because they had practice with the fluid intelligence tests, improvement in the trained groups was substantially greater. Moreover, the longer they trained, the higher their scores were. All performers, from the weakest to the strongest, showed significant improvement...
... No one knows how long the gains will last after training stops, Dr. Jaeggi said, and the experiment’s design did not allow the researchers to determine whether more training would continue to produce further gains.

Fluid intelligence is a part of what determines IQ scores on tests.

I reviewed the PNAS abstract, but there wasn't much there (psychologists don't do structured abstracts, alas). The PDF costs money -- PNAS isn't part of the "open access momvement". I'd like to know how big the improvements really were.

One of my children's working memory is very limited. A 10 to 15% improvement might make a big difference in what he's able to do. If other studies replicate these results we might hope to see a training program developed.

Update 7/5/08: Hoisted from comments, by Martin of MindEvolve:

I was so impressed that I splurged for the full study. The improvements weren't subtle. Over the course of 19 days, the number of objects held in working memory just about doubled, and scores of raw intelligence increased by as much as fifty percent.

I was so impressed that I contacted Jaeggi and her team and developed a software program using the same method so that anyone can achieve these improvements at home. (For just $9 more than purchasing the study!) ...

Martin is marketing a product he's developed here, but he's been at this for a while. So it's intriguing ...

Special needs children and family income

2008-04-30T11:52:00.001-07:00

The only surprise here is that that family income decrease is only about a 14%, though the total cost was estimated at closer to 25% of income. (via FuturePundit: Autistic Kids Lower Parental Income, emphases mine):

The costs of raising kids with developmental defects is very high

New research suggests that the average household with children with autism not only spends thousands of dollars toward educational, behavioral and health care expenses each year, but also suffers from a lesser-known cost that hits them up front – a sizeable chunk of missed household income, perhaps as much as $6,200 annually....

...“That’s a staggering 14 percent loss,” Montes said. “We presume this may be strongly related to a lack of appropriate community-based support resources and services...

The study, published in April’s edition of Pediatrics... is based on data from the National Household Education Survey on After School Programs and Activities in 2005, a telephone questionnaire that drew on parents of more than 11,000 children, kindergarten-age through eighth grade. Parents reported if their child had an autism spectrum disorder, or ASD (that is, if he or she had ever been diagnosed with autism or a pervasive developmental disorder), their total household income and their highest level of education. Several other demographic details were collected, including the parent’s age, type of family (two parent or otherwise) and whether they lived in an urban or rural locale...

...Data collected from 1999 to 2000 showed that each year U.S. taxpayer dollars collectively pay $12,773 of the annual education expenses associated with each child with autism. In spite of this assistance, ASD-affected families still bore the brunt of the financial burden. Between un-actualized income (again, estimated near $6,200) and extensive out-of-pocket ASD-related expenditures – one 2006 national study from the University of Rochester estimated that these families paid nearly $5,300 more than other families – this direct-to-family cost may exceed $11,000 each year...

The authors speculate that the income shortfall may be affected by milder developmental disorders in the parents, however the interaction is complex. Because the projections adjust for parental education, which would be affected by relatively subtle parental disability, a parental disability effect may be already accounted for in the model.

In our situation (adopted children) the income decrease is probably closer to 50%. We still do very well, so no complaints there! The key point is that the burden of cognitive disabilities is very high and lifelong.

This study provides an economic motivation, if we need any, to justify research in identifying the causes of cognitive and behavioral disabilities and creating prevention and mitigation strategies. Prevention, of course, won't help our family very much, but I think there's a lot (lot, lot) more we could do on the mitigation side.

The candidates and disability policy

2008-04-22T13:15:00.001-07:00

Crooked Timber's Michael Berube has summarized the disability policies of the three contending candidates:

Crooked Timber -- Disability and Democracy.

McCain's policy is fairly simple ...

... Yes, well, McCain’s disability policy is much easier to summarize: (a): we need to cut costs; and, following from (a), (b): don’t become disabled...

Clinton does a very good job ...

... A Hillary Clinton Administration would be quite good on disability/ health and disability/ employment, and generally good for my kid – this one, not the college senior who turns 22 today...

but her web site does a poor job of displaying her disability policies.

Obama's plan is "... remarkably enough, at once broader and more specific than Clinton’s". For example:

... proposes “a comprehensive study of students with disabilities and transition to work and higher education” – something that (a) has never been done and (b) is of great interest to teenagers with disabilities and their loved ones. “As president,” we’re told, “Barack Obama will initiate such a study and task his Secretary of Education with researching: the barriers that keep students with disabilities from seeking and completing higher education; the barriers that prevent students from making a direct transition to work; the extent to which students with disabilities are able to access loans and grants; reasons college students with disabilities drop out at a higher rate; and best practices from schools that have effectively recruited and graduated students with disabilities that can be implemented more widely.” This is, as you might imagine, a (cough) special interest of mine. But that’s not just because I have a 16-year-old with Down syndrome. In recent years I’ve had many fine students at Penn State – twenty-year-olds with dyslexia, or Asperger’s Syndrome, or arthritis, or mild cerebral palsy – request “reasonable accommodation” from me on final exams. And I’ve been amazed and appalled at how few many of my colleagues (here or elsewhere) seem to believe that they’re under no obligation to provide reasonable accommodation for everyone. (Guess what? If you teach in the United States, you have that obligation! It’s a real federal law!) So I’m thinking that “a comprehensive study of students with disabilities and transition to work and higher education” might not be a time-wasting exercise for disabliity-policy wonks. I’m thinking that it might actually make a world of difference for students with disabilities – in high school, in transition, and in college...

Among the topics Berube reviews are:

limitations on the ability of insurers to discriminate on the basis of preexisting conditions
fudning of IDEA (the grossly under-funded Individuals with Disabilities Education Act).
federal employment support for persons with disabilities
Tom Harkin's ADA Restoration Act (overturn Supreme Court decisions that have limited the ADA's scope).
Genetic Information Nondiscrimination Act (GINA), which prohibits discrimination on the basis of genetic information by employers and health insurers. (Tom Coburn has blocked passage of this in the Senate).

The bottom line of course is that either Hilary or Obama are light years better than McCain for persons with disabilities and their supporters.

Wanted: a class action lawsuit on academic skills testing for special needs children

2008-04-16T20:16:00.000-07:00

I don't have time to sue the State of Minnesota, but I'd be glad to sign on to a class action suit. I don't want any money -- in fact I'll donate towards a lawsuit.

I wouldn't mind the state's standardized testing program if my son was being tested on something he's studied. If he were being tested on third grade rather than fifth grade material I'd be pleased to participate. That's not how the unthinking robots who wrote the No Child Left Behind law chose to proceed however:

"The Minnesota Test of Academic Skills (MTAS) is Minnesota’s alternate assessment based on alternate achievement standards. The MTAS is part of the statewide assessment program and measures the extent to which students with significant cognitive disabilities are making progress in the general curriculum. The MTAS in reading and mathematics was administered for the first time in spring 2007. Beginning in 2007-2008, the MTAS is administered in reading, mathematics and science.

In order to meet federal NCLB requirements, the MTAS has been aligned with the academic content standards established for all students (i.e., Minnesota Academic Standards). Alternate assessments based on functional skills or skills that are taught at an earlier grade level may not be used for AYP calculations..

So my child loses about two weeks of education (which he greatly needs) and spends most of the day eating candy and playing word games after spending a few minutes pointlessly scribbling on material he can't possibly follow. He's stressed and depressed, and the ordeal has barely begun.

His score will then become a problem for his school, which will be motivated to get him to move on and out, thereby showing nice year-on-year improvement.

This is child abuse. Heck, I feel guilty of child abuse for not keeping him home -- no matter what the law says.

Come on you hungry lawyers! Go for it. Rip their throats out. Get rich and make us happy.

Please.

Changing behavior in children: Kazdin for most and what we do now

2008-04-13T05:06:00.000-07:00

I spent challenging years learning what Kazdin more or less gives away in a few paragraphs plugging his book (good Amazon ratings so far).

Here's Kazdin's summary in Slate ...

How to really change your kid's behavior. - By Alan E. Kazdin - Slate Magazine

... You begin by deciding what you want the child to do, the positive opposite of whatever behavior you want to stop. The best way to get rid of unwanted behavior is to train a desirable one to replace it. So turn "I want him to stop having tantrums" into "I want him to stay calm and not to raise his voice when I say no to him."

Then you tell the child exactly what you would like him to do. Don't confuse improving his behavior with improving his moral understanding; just make clear what behavior you're looking for and when it's appropriate, and don't muddy the waters by getting into why he should do it. "When you get mad at your sister, I want you to use words or come tell me about it or just get away from her. No matter what, I want you to keep your hands to yourself."

Whenever you see the child do what you would like, or even do something that's a step in the right direction, you not only pay attention to that behavior, but you praise it in specific, effusive terms. "You were angry at me, but you just used words. You didn't hit or kick, and that's great!" Add a smile or a touch—a hug, a kiss, a pat on the shoulder. Verbal praise grows more effective when augmented via another sense.

If you don't see enough of the desirable behavior, then you can work on it using simulation play. Wait for a peaceful moment and then propose an exercise. "Let's see whether you can stay calm and just use words when I say no to you. I'm going to say no—remember, this is just pretend—and you stay calm, OK?" You can even switch roles as part of the game. Most kids delight in playing the parent and saying no to the parent playing the child.

Your objective is to arrange for as much reinforced practice as possible, which means you want your child to have many opportunities to practice doing the right thing and then be reinforced in the habit by receiving rewards. Your praise is the most important reward, but you can also add little age-appropriate privileges (staying up for 15 more minutes before bedtime, choosing the menu for dinner), goodies (little five-and-dime gadgets for younger children, downloads or cell-phone minutes for older ones), or treats. And, yes, you reward successful let's-pretend simulation sessions, too. This won't go on forever. A brief but intensive period featuring lots of reinforced practice, often somewhere between a couple of weeks and a month, can make long-lasting or even permanent changes in a child's behavior.

Going ballistic never helps, but explanation aimed at improving a child's understanding can actually play a useful part in this approach. When combined with reinforced practice, explanation has been proven to speed up the acquisition of behavior. So, yes, go ahead and explain why it's important to show respect to parents or to play nicely with others. The understanding your child achieves will resonate with the experience of doing the right thing and being rewarded for it. The deep, nuanced science on this topic all points to reinforced practice as the key, but the greater understanding that comes from explanation is an optional add-on that can help good behavior develop more quickly.

If you've done any dog training lately you'll discover the same approach is very popular with canines. No more yanks on the training collars, effusive praise and food rewards for correct behaviors. I was very skeptical of that approach for our dog Kateva, but I must admit she's an awfully sweet and reasonably well behaved 1.5 year old.

Kazdin doesn't mention it in his summary, but this conditioning approach comes from animal training, where it's coordinated with with the use of "extinction". As Amy Sutherland discovered in her immensely popular NYT article, it works for adults and killer whales alike. For a complete guide to child rearing, I'd suggest the above summary in Slate together with my summary of Sutherland's article. You can read the two within ten minutes and be ready -- for neurotypicals anyway!

Of course I shall venture my opinion on this topic, I would say I am as expert on the childhood portion as most. For the top 80% of the temperament curve any non-abusive approach to child rearing will more or less work for almost every child. So for most family's Kazdin's approach, or any reasonable approach consistent with the temperaments of family and child, will work well enough.

For much of the next 18% I will guess that something like Kadzin's approach, augmented by basic extinction methods and some loss of privileges for various sins, is required for a reasonably successful childhood. (As to adolescence I have no experience and no predictions.)

Most children with high functioning autism fall into this 18% range.

For the most challenging 2% ... well, a miracle is helpful. In my reading list post I recommend Greene, The Explosive Child combined with extinction, positive direction, and rewards. I agree with Kadzin that for these children punishments have little impact on behavior, but some symbolic measures they may be needed to provide a sense of justice (and comfort) to both the sinner and the injured.

We've recent added to this with my wife's version of "applied behavior analysis". She did the reading on this so I can't provide references, but there's psychological judo involved. With the most challenging 2% one very quickly runs out of positive incentives. The range of behavioral interventions needed to provide health, safety and education are so large that all practical measures of praise and reward are piled so high as to be irrelevant. It's the behavioral analysis of "printing money"; the currency is so devalued that a wheelbarrow is needed to buy a loaf of bread.

The trick then is to "revalue the currency". All privileges are removed, and even things like "sugar on cereal" are redefined as privileges. Rights are limited to nutrition, shelter, education and love. Then one seeks actively for all signs of good behavior, no matter how small and new, and rewards them with praise and concrete measures. We've returned to using a sticker chart of about 7 columns by seven rows. Each act is rewarded with praise and a sticker, a column gets a bigger-than-average privilege (ex: 20 minutes on the Wii) or a quarter (the sibs prefer the money, of course the same system must apply to all), a full chart gets a treat or $2.00.

As of today, then, we apply a mixture of Greene, Kazdin (before we knew of him), reward/extinction, Applied Behavior Analysis modified, symbolic punishments in the cause of a child's sense of "justice", as much exercise as a child will tolerate, medications, and many leaps of imagination and experimentation. The experiments usually fail, but some will work, at least for a time, when retested at a later date.

The effective cessation of Minnesota's waiver services program for persons with cognitive disabilities

2008-04-11T20:26:00.000-07:00

Two months ago I wrote about Waivered services and the Personal Care Attendant program:

.... Which brings me back to the PCA (personal care attendant) topic. The AuSM has an excellent handout called Services for Children with ASD (scan PDF 103K) I'll summarize here and expand upon:
TEFRA: medical assistance, but qualification based on disability ... TEFRA will help pay for PCA Services and Waivered services.
PCA services (see esp MN PCA Choice Option)....
Waivered services (see MR/RC (mental retardation) waiver and CADI waiver). The CDSC waiver option (consumer-directed community supports) "parents of minors may be paid for daily care tasks." This has a special appeal for us (below)...

Recently my wife attended a seminar that included a discussion of waivered services. The bottom line -- the DD waivered services program is out of money and is well into yet another crisis of care. I'll run through some history and summarize the current story.

Developmental disability (DD or MR/RC (mental retardation) waiver) waivers began in 1981, as part of an effort to move persons with mental retardation/DD out of CF-MR facilities (institutional care facitlity for mental retardation). Families and guardians received the money equivalent to the cost of institutional care, and the threshold for funding was set at the level of disability requiring institutionalization in 1981.

Now there are waivers for DD, CADI (people <65 style="font-style: italic;">hey pay more in fees than they get in funds.

The funds do not increase once the client is out of school at age 21.

Essentially the program has been on a downward spiral since 1981, but it gets worse. The DD waiver program used for persons with autism and mental retardation is not getting any more waivers? [I need to clarify if is a funding freeze or a reduction.]

The waiting list is long for what waivers exist, and you move up it depending on the intensity of your need. It will be a long long time before anyone without a crisis of care gets one of these waivers -- when pressed, the speaker thought you could wait 5-10 years or longer. One consequence is adults with DD no longer have funds available to move out of their parents home. Eventually the parents are too aged to care for the children ...

So in 1981 persons with DD were institutionalized. Then the institutions were closed, but the funds went to the community. Now the funds are going away, but there are no more institutions.

The CADI (nursing home level disability) waiver still available. It requires full disability requiring nursing home level care. These have primarily been used physically disabled people and persons with schizophrenia or other severe mental health disorders. In some areas they are being used for the DD population.

In addition to the above we learned of the following MN programs:

community support grant: up to $11K or so per year, have to have MA, can't use for PCA but does provide flexibility
family support grant: $250 per month, income limit about $85K
2009 may bring a new program -- 1915J. I found this blurb: "The 2007 Minnesota Legislature authorized the Department of Human Services (DHS) to pursue approval of a state plan amendment for implementing a self-directed supports option in Minnesota. The amendment, referred to as the 1915(j), would allow Medical Assistance (MA) beneficiaries to be in charge of their own personal care services (PCA), instead of having those services delivered by an agency."

I'll update this with corrections and additions.

A breakthrough in understanding the genetics of schizophrenia -- and perhaps of autism too

2008-03-29T19:42:00.001-07:00

A major publication in Science on the genetics of schizophrenia is summarized in Gordon's Notes

Gordon's Notes: What is schizophrenia? Not what we thought.

... note only 15% percent of "schizophrenics" fit this pattern. I'll summarize the key implications:

Schizophrenia is not a disease. It's the name given a fairly large number of unique disorders of brain development that have, among their endpoints, social withdrawal, hallucinations, and fixed beliefs.

A good number of cases of "autism" and "schizophrenia" are different manifestations of overlapping sets of mutations.

There may be"no genes for most instances autism and schizophrenia". There are sets of large scale mutations that are similar between close genetic relatives, but similar appearances are resulting from disorders of quite different components of brain development.

One in twenty seemingly normal people have big, ugly looking mutations that ought to be messing up their brain development. Yet they seem "normal". Seventeen in twenty persons with "schizophrenia" do NOT have these nasty scattered "sledgehammer" mutations. (So called because it's as though something took a sledgehammer to the genome.)

The age onset of schizophrenia is determined by when the disordered developmental genes are activated. There's a lot of this going on in late teen years. The implication is that the same thing explains why "autism" presents around ages 2-3, and why it can seem to appear fairly suddenly. This may also explain why some conditions seem to improve at other ages. Schizophrenia syndromes often improves in middle age, for example.

If every person with autism has a somewhat unique disorder, then treatments and prognosis are also unique. This validates the age old practice of asking someone with a cognitive/psychiatric disorder what treatments have worked for relatives.

I'm seeing a growing consensus that "autism" will turn out to have a similar picture. The trend is clear, autism is also going to turn out to be a diverse collection of disorders of brain development and injury response with diverse genetic causes. These as yet unnamed disorders will turn out to have different prognoses and different therapies.

Wanted: A new profession of neurotherapy

2008-03-29T07:18:00.001-07:00

I don't ask for much.

So I won't ask for any miracle cures. I would, however, like to see a new profession.

I'd call it cognitive therapy, but that name's taken. So I'll call it neurotherapy for now.

A neurotherapist is a cross between a coach, teacher, occupational therapist, speech therapist, trainer, psychiatrist and neurologist.

A neurotherapist studies a child or adult with cognitive disorders and creates a profile of abilities, talents, disabilities and traits.

The neurotherapist then establishes up an empirical program of training, and studies the response across aspects of the individualized cognitive profile.

Some aspects respond to training. These receive special attention. Others respond poorly, they may be approached through different modalities. Over time a repeated failure of one aspect to respond to training means time and energy shift to other aspects.

A neurotherapist looks for collections of traits that may support employment or important skills. The neurotherapist designs training interventions that combine areas of relative strength that can compensate for areas of weakness.

Of course there's a wee problem with insurance payments and professional certification, but if we can squeak by that little detail I'm sure we could make progress. The first neurotherapists would likely be privately employed speech and occupational therapists looking to do much more than they're currently able to do.

Are you a speech or occupational therapist based in the Twin City region and looking to be one of the world's first neurotherapists? Send me a note: jfaughnan@spamcop.net.

Guanfacine and lessons about off-label drug use

2008-03-27T20:08:00.001-07:00

Guanfacine, marketed as Tenex, was once used to treat hypertension. These days it's also used, off-label, for the management of behavioral disorders in children.

Very off-label. You won't find this mentioned in most drug references. You also won't find mention that guanfacine alters the course of neuronal development in mice, or that Guanfacine ... Improve Paired Associates Learning, but not Delayed Matching to Sample, in Humans:

Neuropsychopharmacology (1999) 20 119-130.10.1038/sj.npp.1395238...

... The present study compares the effects of two alpha2-agonists, clonidine (0.5, 2, and 5 g/kg, PO) and guanfacine (7 and 29 g/kg, PO) in young healthy volunteers on their performance in visual paired associates learning (PAL) and delayed matching to sample (DMTS) visual short-term recognition memory tests.

In the PAL test, clonidine 2 and guanfacine 29 g/kg improved the subjects' performance.

In the DMTS test, clonidine at 5 g/kg delay-dependently impaired performance accuracy, and at 2 and 5 g/kg it also slowed responses. Guanfacine had no effect on DMTS test performance. Clonidine 5 and guanfacine 29 g/kg equally increased subjective feelings of sedation and reduced blood pressure.

The results suggest that both clonidine and guanfacine facilitated PAL learning by improving "frontal strategies," but only clonidine disrupted "mnemonic processing" decreasing DMTS accuracy. The greater selectivity of guanfacine for alpha2A-adrenoceptor subtype may explain the different profile of action of the drugs.

This isn't a new study by the way, it's nine years old. It turns out there's an extensive literature on Guanfacine and cognition, much of it based on animal studies done in the 199os.

More recently, guanfacine is being studied for the treatment of schizotypal personality disorder because "there is evidence that guanfacine enhances cognition and diminishes impulsivity". In fact, today there are 19 Clinical Trials that reference guanfacine, one of which was completed and resulted in a publication in January 2008 -- "Guanfacine extended release met the primary and secondary efficacy end points. It was well tolerated and effective compared with placebo." (Clinicaltrials.gov, by the way, is impressive.)

Phew. I thought I was relatively clued into this world, but I'd have bet real money there wouldn't be any studies of Guanfacine in children -- it's off-patent. I'd have been very wrong.

So what lessons can I draw about off-label med use from this experience:

We didn't learn much from the responsible clinicians. I suspect that's typical.
You won't learn about off-label medication use by reading medication references -- they tend to avoid these topics.
Clinicaltrials.gov is very impressive. Enter your off-label drug there and learn.
scholar.google.com and PubMed cover the publication field, though I've found odd bugs in the former (links pointing to the wrong article).
Animal studies are particularly interesting.

Does this mean we're more comfortable with use of the drug? Yes, somewhat -- particularly because of the Jan 2008 publication in Pediatrics. I really hadn't expected to see real trials in children. On the other hand, guanfacine seems to be a relatively powerful medication, and we really don't know what the effects of longterm use are on the developing brain. It could be helpful in the short term and harmful in the long term (see: estrogen).

I've created an RSS feed in PubMed for guanfacine, so I'll be notified of new publications.

Google for Non-Profits

2008-03-18T19:13:00.000-07:00

Google for Non-Profits doesn't have a lot of new things, but Google is putting them all in one place. Great stuff for special needs related organizations. The big three are:

Free online advertising (Google grants)
Google Apps for non-profits (a terrific infrastructure, see Minnesota Special Hockey).
Checkout: Google processes credit card donations - for free!