Friday, December 25, 2009

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:

Tuesday, December 22, 2009

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:

Wednesday, December 16, 2009

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.

Sunday, December 13, 2009

Wealth and med choice: the antipsychotics

Interesting results, annoyingly inflammatory interpretation ...
Children on Medicaid Found More Likely to Get Antipsychotics -

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.

Tuesday, December 01, 2009

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.

Sunday, November 22, 2009

Special education and assistive technology for OS X

Apple has revised two pages on their web site related to special needs (adaptive, assistive) technology:
The first two are now current with Snow Leopard, though I'm personally deferring an update to that Intel-only platform until either April 2010 or a new machine.

I don't see anything equivalent to Don Johnston's Co:Writer word prediction software, however 10.6 includes a new (I don't think this is in 10.5) word completion feature:
... Students can avoid spelling mistakes and reduce keystrokes with the word completion feature of the Mac. After typing a few characters, pressing the Escape key opens up a menu of words to choose from beginning with the characters they typed. It highlights correct word usage, and it’s available in most applications...
Co:Writer might work in an XP or Win2K VM, though I was unable to find any data on that.

Update: There is an OS X version of Co:Writer, it's being updated for 10.6. I realize that Don Johnston sales are almost entirely to schools, but I do think he might market it a bit. At the very least it ought to be listed on Apple's accessibility site. I'll write him about that.

Saturday, November 21, 2009

The homework workstation account

My 12 yo is a computer problem. He has trouble getting off the computer when his time is up [1] and, if not supervised, he visits inappropriate web sites.

On the other hand, his computer skills are a relative strength now. In the future they'll be the foundation for the cognitive aides he'll live with for the rest of his life. So I want to build those skills.

He's long had his own user account on our MacBook, with OpenDNS filtering and Parental Controls logging. He can use that with close supervision, but it's not appropriate for lightly supervised homework.

So I've created a new "homework" account that's really locked down ...
Be the Best You can Be: A simple English wikipedia

... I subsequently configured a user account on the family MacBook restricted through Parental Controls to Tar Heel Reader and Simple Wikipedia. This is effectively a homework account, in addition to the web readers it includes Calculator, Grapher, Dictionary/Thesaurus, Google Earth, AppleWorks and the weather, time and calendar widgets...
The homework account is useable with much less supervision than a standard account. In time I might make this available to all the children without time restrictions.

[1] I do too, but I'd hope right off if I faced the consequences he gets. The inability to adjust behavior to consequences is one of the gravest disabilities for many "explosive" children. That's why the fights we have are also valuable. If he can learn to manage the timed computer intervals, then he will have acquired a critical skill. Lately he's done quite well with an iPhone Timer running next to him. He likes the look of it, and the way the numbers move down. Even the alarm sound works. With this setup, and years of struggle, he's doing pretty well. Timer skills are key for him, so this is a double win.

Tuesday, November 17, 2009

A simple English wikipedia

The Simple English wikipedia was designed for people learning English ...
Simple English Wikipedia

This is the front page of the Simple English Wikipedia. Wikipedias are places where people work together to write encyclopedias in different languages. We use simple English words and grammar here. The Simple English Wikipedia is for everyone! That includes children and adults who are learning English...
Of course simple words are also helpful for many special needs readers.

This resource is worth further exploration.

Update 11/21/09: My 12 yo is comfortable reading the simple Wikipedia articles. That's not to say he volunteers to read them, but he's willing and able to read them to earn stickers towards Wii or web time.

I subsequently configured a user account on the family MacBook restricted through Parental Controls to Tar Heel Reader and Simple Wikipedia. This is effectively a homework account, in addition to the web readers it includes Calculator, Grapher, Dictionary/Thesaurus, Google Earth, AppleWorks and the weather, time and calendar widgets.

There was one catch. Simple Wikipedia (and wikipedia) are not compatible with Apple's "Parental Controls". It took all my geekery to figure out a solution (see last update).

Sunday, November 01, 2009

IQ and reasoning - not quite the same thing

This Scientific American article was written about smart people who don't reason very well (Mensa specializes in this group)...
Rational and Irrational Thought: The Thinking That IQ Tests Miss: Scientific American

No doubt you know several folks with perfectly respectable IQs who just don’t seem all that sharp. The behavior of such people tells us that we are missing something important by treating intelligence as if it encompassed all cognitive abilities. I coined the term “dysrationalia” (analogous to “dyslexia”), meaning the inability to think and behave rationally despite having adequate intelligence, to draw attention to a large domain of cognitive life that intelligence tests fail to assess.
The converse, of course, would be people with lousy IQs who still reason fairy well. They are able to solve real world problems much more effectively than IQ test problems.

My Google Reader Shared items (feed)

Saturday, October 31, 2009

Shoelace tying - this approach worked

This worked.

More than coordination or sequencing or geometry, the problem is frustration and discouragement. The key is to drop the skill down to something that is sure to work, then succeed at that, then add another skill. If failure occurs drop back a skill level. When a skill level is secure, move up.
  1. We practiced with a shoe on his leg, and good lace length.
  2. A practice session of ten tie-related acts earned 10 min of screen time (Wii, web, game).
  3. I started out holding one lace, looping the other one over it, and then my son had only to pull the second lace through.
  4. Then we graduated to the bottom tie.
  5. Then I would do the bottom tie and I would hold two loops, positioning one so it had only to be pulled through the other. (For a while I used thread to bind the loops. That was useful as well.)
  6. Then I would hold only one loop.
  7. Then he started tying the loops.
  8. Then he did the entire tie.
  9. Then he started working with the shoe on his lap.
  10. Lastly with the shoe on his foot.
In retrospect, this seems blindingly obvious. In reality we flailed around with this for years; if we'd started out this way we could have succeeded long ago. We'd left this task largely to the therapists that were supposed to know how to teach it, but in the end we had to develop our own curriculum. Not the first time for that.

The training approach has other applications.

PS. I owe this training methodology to Steve Yelon of MSU's OMERAD program. He developed this approach when doing skills teaching for the US Secret Service.

Thursday, October 29, 2009

Courage Center Camps on Facebook

Courage Center has a Facebook page where they're putting events information such as the Dec 19th alumni Holiday Party:

11:00 AM- 4:00 PM Saturday December 19, 2009

• Soup and sandwich luncheon
• Hayrides
• Cookie decorating
• Sledding
• Snowshoeing & Cross county skiing
• Campfire & songs

Wednesday, October 28, 2009

Assistive communication app for the iPhone and iTouch

Gradually, developers are turning the iPhone into an assistive technology device.
Proloquo2Go: Assistive communication for the iPhone and iPod touch

...Proloquo2Go [iTunes Link] is not your usual iPhone/iPod touch app. It turns the mobile device into a full augmentative and alternative communication device ...

...When signing is not available or appropriate, using an AAC device may well be. AAC devices use combinations of symbols, words, sounds and technology to allow people without functional vocal abilities to communicate. The cost of such devices range from around US$3,500 to US$8,500 for something about the size of a Speak and Spell...

...In contrast, the Proloquo2Go app has a price of US$189.99...
At the moment medicare doesn't reimburse for the app and iTouch, since there's a well intended but obsolete single-purpose device rule with medicare. That's likely to change.

It will be interesting to see how the worldwide market will transform these kinds of solutions, both on the iPhone and on Android.

Behavior management and special needs children

I’m putting together a list of posts and references related to the adaptation of animal training methods to the behavior management of special needs humans …

Not much so far, but I’ll add more.

Update 2/18/2010: added many more.

Saturday, October 24, 2009

Unexpected wins and special needs

I’m reasonably good at predicting what two of my children will like and do.

I’m much less accurate at predicting the interests and abilities of my most exceptional son. Sometimes I guess high, but more often I guess low.

When we started playing baseball, I never thought he’d be a competitive and eager ballplayer. His recent soccer playing was completely unexpected. Yes, he is the weakest player on his school team – but he continues to go to practices.

He’s learned more math than I expected he would. I’m glad I listened to the advice of the mother of a girl with Downs syndrome. She told me her daughter got more out of sitting in mainstream history classes than she’d expected.

Today, though, he really surprised me. We’ve had great struggles with him getting off the computer when his earned time has ended. This is where multiple disabilities meet; the limited effectiveness of any punishments or of delayed rewards, frontal lobe dysfunction, ADHD, time perception, limited flexibility, frustration, lock-in, planning issues, and typical adolescent maternal/son power struggles exacerbated by all of his disabilities.

These challenges had led to a rule that both parents had to be present for his computer use; mostly so I could be the enforcer.

A difficult situation, but these challenges are also opportunities. He’s fighting over something he wants to do, but it’s extremely hard for him. It tests his weaknesses. To succeed he must develop new skills and strategies that will work in many life situations. The prize is worth the struggle.

His younger sibs don’t have the dual parent constraint. For my son, this indignity was the last straw. He was ready to deal, and he knew we had a strong position. Nine years of living the Greene approach have made him a seasoned negotiator.

The deal was that he’d use a countdown timer on one of our phones. He had to stop use immediately on the alarm with no parental words at all (it helps this is an iPhone alarm – tasteful and elegant). He had to do this five times in a row. If he succeeded he would revert to having the same privileges as his siblings. I wrote out the rules and five checkboxes and put it on the kitchen wall.

He succeeded on his first run, somehow managing to earn 5 wins in 3 days. (It hadn’t occurred to me that he could take his computer time in shorter segments, thereby shrinking his trial period. I’m intrigued by his intuitive ability to invent strategies like this – without being able to verbalize them.)

So he’s back on the same routine as his sibs – though he’s obligated to forever use the timer. Timer skills, of course, are very helpful for ADHD children and adults. As we’d planned.

Of course I expect he’ll regress. We’ll be back to the struggle again, and he’ll have to earn another five checks in the row. (As I wrote this, however, he completed a 10 minute segment brilliantly – stopping a game in mid-move. I’d have bet $40 he wouldn’t do that.)

Whatever happens now, victory is ours. We now know he can do this, eventually we will win. We, as in he and us.

This afternoon we try mainstream hockey. Another giant challenge. He has many more challenges in his life than I do.

Ok, maybe not many more. Comparable, anyway.

Update 2/18/2010: We still struggle with the computer, but we've definitely made progress. I'd forgotten we used this program (my own disabilities - aging brain) and I might try it again. He did succeed in the hockey program -- really better than I thought he would.

Saturday, October 17, 2009

Accelerated aging in special needs caregivers

The 2009 Nobel Prize in Medicine was given for research on aging, including research on telomere shortening (a marker of accelerated aging) related to stress. When I first read of this in 2004 I learned the research was done on women caring for sick children.

Yes, fellow special needs caregiver, it’s not just your imagination. You are getting older faster.

So what can we do?

Well, first I’ll make the case for why we should invest some of our precious time to longer living. For one thing we know we’re going to be parenting until we check out. We need to stay healthy to do that, so investments in health can be justified by parenting mission as well as selfish priorities.

So you should be sure to … err … uhh …

Actually, we don’t know if there’s anything that can lesson this accelerated aging, and we’re sure there’s no way to reverse it. The best we can do is make some educated guesses …

  • Sleep may be more important than we’ve suspected. So we may need to weight it more highly than even diet or exercise. Don’t sacrifice sleep for exercise – it may be an unwise trade.
  • Don’t smoke. Of course nobody should, but it’s even worse in our situation.
  • Watch your stressing. Sometimes we treat stressing as a badge of honor, but it’s probably bad in itself.
  • Exercise.
  • Keep your social networks. Best of all – exercise with friends.
  • Eat good, eat less.

Exercise and sleep are the problem. They both suck time, and time is one of the things we don’t have. This research doesn’t help make time, but it does give us different priorities.

Oh, and probably stresses us too.

Incidentally, unless Obama’s health care reform passage works, you can expect questions from your health insurer about sick or special needs children. They’ll want to be sure to avoid insuring us …

See also

Understanding why reading is hard

I’ve been fascinated by the evolutionary neurobiology of reading since about 1980, when I was an exchange student at Williams College studying neurobiology. That’s when I realized that human reading was preposterously strange. It was a novel idea at the time, but I didn’t pursue it. Now, thirty years later, reading is finally being recognized as a bizarre human achievement.

I particularly appreciate this essay of Maryanne Wolf, hidden inside a NYT blog posting. Here she is concerned about how reading will develop as we move away from paper  …

Beyond decoding words – Maryanne Wolf (NYT blog Oct 2009)

Maryanne Wolf is the John DiBiaggio Professor in the Eliot-Pearson Department of Child Development at Tufts, and the author of “Proust and the Squid: The Story and Science of the Reading Brain.”

After many years of research on how the human brain learns to read, I came to an unsettlingly simple conclusion: We humans were never born to read. We learn to do so by an extraordinarily ingenuous ability to rearrange our “original parts” — like language and vision, both of which have genetic programs that unfold in fairly orderly fashion within any nurturant environment. Reading isn’t like that.

Each young reader has to fashion an entirely new “reading circuit” afresh every time. There is no one neat circuit just waiting to unfold. This means that the circuit can become more or less developed depending on the particulars of the learner: e.g., instruction, culture, motivation, educational opportunity. [jf: and individual biology, which she bizarrely omits from this list]

Equally interesting, this tabula rasa circuit is shaped by the particular requirements of the writing system: for example, Chinese reading circuits require more visual memory than alphabets. This “open architecture” of the reading circuit makes the young reader’s developing circuit malleable to what the medium (e.g., digital online reading, book, etc) emphasizes.

And that, of course, is the problem at hand. No one really knows the ultimate effects of an immersion in a digital medium on the young developing brain. We do know a great deal, however, about the formation of what we know as the expert reading brain that most of us possess to this point in history.

In brief, this brain learns to access and integrate within 300 milliseconds a vast array of visual, semantic, sound (or phonological), and conceptual processes, which allows us to decode and begin to comprehend a word [1]. At that point, for most of us our circuit is automatic enough to allocate an additional precious 100 to 200 milliseconds to an even more sophisticated set of comprehension processes that allow us to connect the decoded words to inference, analogical reasoning, critical analysis, contextual knowledge, and finally, the apex of reading: our own thoughts that go beyond the text.

This is what Proust called the heart of reading — when we go beyond the author’s wisdom and enter the beginning of our own.

I have no doubt that the new mediums will accomplish many of the goals we have for the reading brain, particularly the motivation to learn to decode, read and experience the knowledge that is available. As a cognitive neuroscientist, however, I believe we need rigorous research about whether the reading circuit of our youngest members will be short-circuited, figuratively and physiologically.

For my greatest concern is that the young brain will never have the time (in milliseconds or in hours or in years) to learn to go deeper into the text after the first decoding, but rather will be pulled by the medium to ever more distracting information, sidebars, and now,perhaps, videos (in the new vooks).

The child’s imagination and children’s nascent sense of probity and introspection are no match for a medium that creates a sense of urgency to get to the next piece of stimulating information. The attention span of children may be one of the main reasons why an immersion in on-screen reading is so engaging, and it may also be why digital reading may ultimately prove antithetical to the long-in-development, reflective nature of the expert reading brain as we know it…

Now if we could just figure out how to actually make some of this knowledge useful in teaching reading to children who struggle with it.

[1] Some very recent breakthroughs have expanded this understanding – The evolutionary wonder of reading – hints from intracranial electrophysiology.

Wednesday, October 07, 2009

Special needs criminals

The average IQ of an inmate is about 87. Since 75 is usually considered mental retardation, there are a lot mentally retarded persons in prisons. Even the average prisoner is borderline retarded.

Prisoners are a special needs population.

Hold that thought. Now, readers with children on the "explosive" spectrum, raise your hand if you have not contemplated your future adult child behind bars. Ahh, as I expected. No hands are raised.

We know some of our children don't respond normally to near term consequences - much less long term consequences. They pretty much only respond to immediate consequences and rewards. The future, for them, is a foreign land.

People studying prisoners, have come to similar conclusions from a different direction ...
Economic View - A Smarter (and Cost-Efficient) Way to Fight Crime -

LAW enforcement policy in the United States rests implicitly on the “rational actor” model of traditional economics, which holds that people take only those actions whose benefits exceed their costs.

This model says that crime will be deterred if the expected punishment is strong enough — a prediction that has not been borne out in practice...

Mark Kleiman, a professor of public policy at the University of California, Los Angeles, says there is a better way. In a new book, “When Brute Force Fails,” he argues that instead of making punishments more severe, the authorities should increase the odds that lawbreakers will be apprehended and punished quickly.

... most criminals are not the dispassionate rational actors who populate standard economic models. They are more like impulsive children, blinded by the temptation of immediate reward and largely untroubled by the possibility of delayed or uncertain punishment.

The evidence suggests that when hardened criminals are reasonably sure that they will be caught and punished swiftly, even mild sanctions deter them. But not even the prospect of severe punishment is effective if offenders think they can get away with their crimes...

... Experimenters have found, for example, that even long-term alcoholics become much less likely to drink when they are required to receive a mild electric shock before drinking. Many of these same people were not deterred by their drinking’s devastating, but delayed, consequences for their careers and marriages...
Mr. Kleinman advocates a particular policing strategy that is effectively designed for a special needs population. The idea is to concentrate resources to increase the probability of capture for a targeted subgroup. The theory is this group will respond to the probability of capture -- perhaps even if the actual punishments are less severe (hence less costly). They will then change their behavior, which frees up resources to target the next sub-group (dynamic policing).

Reducing criminal behaviors is one outcome that police, wardens and parents can all agree on.

In the meantime, and in the hope of avoiding outsourcing grown child housing and care responsibilities to the penitentiary, it's useful to think about that punishment/probability of detection equation when trying to change the behavior of special needs children.

It's not the intensity or duration of the consequences that we should be thinking about, it's ensuring a high probability that any misdemeanors will be rapidly detected. The focus is on vigilance ...

Tuesday, October 06, 2009

This a really bad idea ...

A woman decides to try treating her son's autism with cannabis..

Not surprisingly, since she wrote an article about it, she feels he's doing well.

This is such a bad idea -- though I can understand why a parent might be so desperate they might try it.

Let me name the reasons why you shouldn't consider following along ...
  1. Cannabis is not a placebo. Cannabis is not a "safe" but worthless herbal remedy. Cannabis is big-time pharmacologically active stuff. It has tons of effects. Maybe some of those efffects will help some brains; there's some thought that it accelerates neuronal connection death -- and that could even be therapeutic. Probably other effects will hurt other brains. Maybe it will both hurt and help. Maybe it will help for a while, then really hurt. Nobody knows.
  2. Anyone remember thalidomide? It was supposed to be great for morning sickness, which is why it was given to my Canadian mother. In the US though the FDA didn't approve it. (My mother didn't take it, so I have all my limbs.) I don't think the FDA approves of treating neuroconnectopathies with cannabis.
  3. People running an experiment are famously fabulously lousy judges of how well it works -- even when they're not deeply invested in declaring success.
  4. The placebo effect on aggression can be enormous. Even if the Cannabis was marginally helpful, or somewhat harmful, we should expect a very large placebo effect in this kind of experiment.
  5. Any parent with judgment this bad (or desperation this great) is going to be a very poor scientist. So even if we disregard the experimental design (open) and placebo effect, we should still be very skeptical of this report.
  6. Heck, let's try Scotch. LSD. Heroin. Maybe all three, in combinations. On alternate days. When you're going to experiment on this scale, there are no limits.
Ok, but even if running this radical experiment on your child is a very bad idea, could cannabis play some useful role someday in treating some autism spectrum disorders? Well, in 2004 I wrote of the endocannabinoids ...
[a] .... book I've quite appreciated, written by an adult who'd suffered from severe ADHD/Explosive disorder, emphasized how severe his withdrawal syndrome was from marijuana, and provided anectdotal evidence that for children with ADHD marijuana is a particularly disruptive drug.

Given all of the above, it does not seem to be a great leap to a speculative relationship: Buspirone and endocannabinoids and "Explosive Disorder"/ADHD.

An interesting axis to explore. So I fired up and entered the search terms: endocannabinoid buspirone. Intriguingly that led to the article cited here, a mouse study [found that] Endocannabinoid CB1 disruption did produce a peculiar mouse behavior -- anxiety/withdrawal in unfamiliar settings, aggression/activity in familiar settings. Hmmm. That sounds interesting.

It will be very interesting over the next few years to see how the Buspar, endocannabinoid, CB1, ADHD, PDD, explosive child, EBD, CCBD (complex cognitive behavioral disorder) axis evolves. Look for some interesting work on children with EBD using PET scans and Buspar. We are probably five to ten years from well understood therapies however -- even if this relationship holds up...
Yes, there are lots of reason to be curious about the endocannabinoids -- in animal studies.

Just don't do this on your kids.

Managing net access

Computer misuse isn't a uniquely special needs problem, but problems with abstract concepts of trust and responsibility can make things harder.

After discovering the limits of our supervisory capabilities we're augmenting them per this post ...
Gordon's Tech: Web filters - return to OpenDNS

... I figured we could restrict access to watched machines. Yeah, if we weren't so distracted that might work. The logs, though, tell me that ain't doin' it.

Multiple computers with multiple accounts on each computer doesn't help. Neither does running OS X, there's not much of a market for OS X access management (see: Children Online: Web Filters); they are sold but I can't find any reviews from anyone I trust [1]. There might be a market except Apple bundled Parental Control into the OS.

Oh, wait, why not use Apple's Parental Control features? Because they're $#!$#!$ broken and they've been $&*^%^% broken for years...

Thursday, October 01, 2009

Different minds, Different paths

In most anything to do with thinking, my eldest son and I aren’t in the same league.

For now. In 25 years, if I’m still living, we might be a lot closer.

Even so, every so often, he solves some problem better than I can.

It’s not only the near-savant visual processing abilities that help him find his (frequently) lost brother. Nor his exceptional navigation skills that have corrected my driving since he was about 3 years old. He also has an unusual ability to come up with good solutions to sequencing/routing traveling salesman type problems. That might be why, when he’s in the mood, he’s very good at the game ThinkFun RushHour (traffic jam).

I was reminded of that this morning on the way to work. We were chatting about how we’d manage some family routing issues on the way to work, and, seemingly without effort, he gave me the answer I’d missed.

So my challenge, as ever, is to figure out how he can leverage what he’s good at, while managing the things he can’t do. Being the best he can be …

Saturday, September 26, 2009

Mobile phone use with special needs children – more lessons learned

Three months ago, as grade school ended, we let our 12yo son carry a T-Mobile PayGo phone (an old phone we had lying around, unlocked after its AT&T contract ended).

We did the usual thing with posting rules and so on – but they were soon forgotten. In fact, I only remember the rules because I reread my prior post!

So how did it go? Was our son able to handle the complexities of a semi-modern cell phone? (His Nokia is much harder to use, for example, than an iPhone)

It has gone well and he’s done well with the phone. I think having the phone connection to us has been terribly important during his first weeks in Junior High. It’s been a great self esteem boost – one of the few times he can resemble his neurotypical classmates. We had some concerns that he was pestering a former classmate, but we’ve checked into that and it’s good so far. He’s proud of his phone, and careful with it.

On the other hand, he burnt through the T-Mobile minutes pretty fast. I also discovered that, contrary to expectations, I couldn’t get any information from the T-Mobile site on what numbers he was calling. That made me nervous.

After he went through $10 in a week I gave up on the Pay-G plan sand moved his phone to our AT&T family plan ($10/month, $20-$30 or so fee for the new number).

I want him to text as a way to develop some basic communication and writing skills so I signed up for that great 21st century scam – the text plan (200 messages/month, but remember one pays to receive (grrrrrr) as well as send, so this is only about 3 messages sent a day).

I hated to pay for the text messaging, but if it helps him with written language it’s well worth much more. I also opted to try another $5/month service - “Smart Limits for Wireless”. It includes …

Text/IM Limits: I set to 100
Download Limits: I set to zero since he doesn’t have a data plan.
Browsing Limits: Also set to zero
Time of Day Restrictions: none yet
Allowed Numbers: these are numbers one can use even during restricted times. None yet.
Blocked Numbers: Useful if he’s harassing someone
Content Filters

I limited him to about 100 text messages, so with those he receives he might stay under 200. The big thing is the IM limits and the tracking. I’ll report back on how well it works.
I didn’t want to deal with Voice Mail, so I set the phone to forward to a Google Voice number that sends me transcriptions of any messages.
So far this has been a successful experiment. If it continues to go well I may get him a used iPhone with a data plan – so he can carry a much more powerful aide.

Update 10/6/09: Still very successful, and much more essential than I'd expected. Junior High School is somewhat unpredictable, and having a cell phone when soccer is canceled sure helps.

Tuesday, September 08, 2009

Abercrombie & Fitch humiliation of autistic child - no apology

There's a sickness in the culture of this clothing retailer. Emphases mine.
Abercrombie & Fitch fined in MOA discrimination case |

A judge ordered retail giant Abercrombie & Fitch to pay $115,000 for discriminating against a 14-year-old autistic customer at its Mall of America store.

The civil penalty, the largest of its kind in at least two years, came four years after store employees refused to let the autistic teen join her older sister in a fitting room because of the clothing chain's anti-shoplifting policy. The store refused to relent even after the sister, and later the girls' mother, explained that the 14-year-old couldn't be alone because of her disability.

The confrontation humiliated the girl, who testified that the incident made her feel like a "misfit."

"She was singled out and required to hear her sister and mother repeatedly ask for accommodations based on her disability, in front of a long line of customers, at a store that markets itself to young people as a purveyor of a particularly desirable 'look' " administrative law judge Kathleen D. Sheehy declared in her ruling.

When several complaints to the company were ignored, the girl's mother, Elizabeth Maxson of Apple Valley, took the case to the Minnesota Department of Human Rights. The investigation encountered fierce resistance from Abercrombie & Fitch, a New Albany, Ohio-based company that posted $3.5 billion in revenues last year. The company even denied that the girl, identified only as M.M. in court documents, had a disability until the first day of the administrative law hearing in April. She was diagnosed as autistic at the age of 2.

In her ruling, Sheehy found that Abercrombie & Fitch violated the Minnesota Human Rights Act and ordered the company to pay the girl $25,000 for mental anguish and suffering. The company also was ordered to pay $25,000 to the state as a civil penalty, $41,069 in attorney's fees, $20,441 to the human rights department for its expenses and $3,753 in other expenses.

Abercrombie & Fitch also was ordered to post signs in its seven Minnesota store explaining that disabled individuals should seek out a sales associate to obtain an exception to the company's policy allowing only one person in the fitting room at a time. The company also must provide an hour of training for all employees in Minnesota who interact with the public to make sure they understand how to help disabled customers.

Abercrombie & Fitch has appealed the fine to the Minnesota Court of Appeals.
Four years. That's how long the Maxson family had to fight this, while Abercrombie's lawyers sat back and waited for them to give up. Even so the fine is pathetically small; for a company this size a meaningful fine would be on the order of $100 million, not $100 thousand.

Even so, Abercrombie and Fitch not only fails to apologize, they appeal the fine. Minnesota clearly needs much bigger fines.

... Developed and launched a comprehensive training curriculum. It includes e-learning based programs focused on diversity awareness and skill building, as well as, an innovative and provocative approach to education that we call reality-based learning. This approach is unique in that we base the learning on real-life issues that may take place in our store environment and reflects our work culture. The training scene is enacted by actors/inclusion experts during the training program, so that we can generate an interactive dialogue about how to solve relevant management issue...
Of course this statement follows a 2005 class action lawsuit for discrimination. Abercrombie and Fitch paid out $50 million for that one, but it obviously didn't touch their corporate culture.

This is one retailer we can do without. Don't shop there.

Sunday, September 06, 2009

Special needs: Mobile communications and surveillance

Posting has been light over the summer. It's been a great summer for us, with all of our children, diverse and neurotypical alike, making progress on different curves.

Now things will pick up again. Our Aspie dude is more assertive about doing his own thing, which means we have to work harder to get him the things he needs but doesn't want. Our complicated guy is entering junior high, which means we have a lot less control and awareness of what's going on.

There's guaranteed turbulence ahead, which should make for more posts.

In the meantime, I've been moving forward on the mobile/messaging strategy I outlined a few months ago ...

... We are starting out with a minimal cost phone and a simple pay-as-you-go T-Mobile plan. When the money is spent the phone stops working until we 'refuel'. For now we share a single number and phone, though if Google Voice ever goes live each child will get a lifelong GV number....
Recent events showed that we made the right call on the cell phone. When our eldest ran off into a crowd of 300,000 people or so a combination of his exceptional navigation skills and the "child phone" meant we didn't need to fuss with police searches.

Now, since Google Voice has opened up, I've also gotten him a Google Voice number and email through our Google Apps family domain. Both of these are under our control -- so his voice mails get routed to both parents as do all his incoming email. I also have the ability to track his outgoing emails. He won't have access to the Google Voice or Google email credentials until he's older. The Google Voice number will be his for life.

My next question will be whether to stay with current T-mobile phone or move him to a smart phone (Android or iPhone). It would be very helpful to be able to track his movements by his phone. We can be do that through AT&T's tracking service (designed to track children) on any phone (if we move him to AT&T), through Latitude on an Android phone or Blackberry, and through MobileMe on an iPhone.

Yes, he'll be entering his teen years under close surveillance, though I'm expecting he won't know of it. This guy gives new meaning to the world 'vulnerable'. Over time I hope we all succeed enough that he migrates from surveillance to on-demand-assistance using the same infrastructure.

Tuesday, August 04, 2009

Neurodiversity moves closer to mainstream

Asperger’s Syndrome, on Screen and in Life is a NYT article about several new movies and books about Asperger's syndrome.

It could be considered a marker in a social movement towards greater acceptance of, and adaptation to, neurodiversity.

Saturday, July 25, 2009

Scientific American goes nuclear on Ritalin

Edmund Higgins, a clinical associate professor [1], has written a blistering attack on Ritalin, and gotten it published in Scientific American – a magazine that’s presumably sharing the industry’s revenue problems.

Dr. Higgins compares Ritalin (methylphenidate) to methamphetamine. This is the rhetorical equivalent of comparing a human to Hitler; it’s chemically correct but it’s the mark of a crank. It’s a Godwin’s Law violation.

On the other hand, as someone who’s child has been on Ritalin and other ADHD meds for years, I’ve long had the same sort of concerns. Ritalin has an astounding safety record, but we’re messing with the neurochemistry of a rapidly evolving brain over a period of years and decades. I personally wouldn’t use this, or any other, long-term psychiatric medication medication in my child unless all other options had been exhausted and the disability and risks of non-treatment were severe. I’ve previously made the comparison to treating cancer. Nobody should expose a child to life threatening chemicals with severe long term effects– unless the alternative is worse.

Another point in Higgins favor is his interest in animal models. Given the immense difficulty of studying psychiatric medications in children, animal models are pretty much all we’ve got. So let’s see what he says about the animal models, stripping out some inflammatory rhetoric and considering only studies of meds used to treat ADHD. Note that much of this research is more recent that a 2006 review of mine that was pretty reassuring, but that means it won’t have been validated by other researchers …

Do ADHD Drugs Take a Toll on the Brain?: Scientific American

Edmund S. Higgins is clinical associate professor of family medicine and psychiatry at the Medical University of South Carolina and co-author, with Mark S. George, of The Neuroscience of Clinical Psychiatry (Lippincott Williams & Wilkins, 2007) and Brain Stimulation Therapies for Clinicians (American Psychiatric Publishing, 2009).

… In an experiment published in 2003 psychiatrist Eric Nestler of the University of Texas Southwestern Medical Center and his colleagues injected juvenile rats twice a day with a low dose of methylphenidate similar to that prescribed for children with ADHD. When the rats became adults, the scientists observed the rodents’ responses to various emotional stimuli. The rodents that had received methylphenidate were significantly less responsive to natural rewards such as sugar, sex, and fun, novel environments than were untreated rats, suggesting that the drug-exposed animals find such stimuli less pleasurable. In addition, the stimulants apparently made the rats more sensitive to stressful situations such as being forced to swim inside a large tube. Similarly, in the same year psychiatrist William Carlezon of Harvard Medical School and his colleagues reported that methylphenidate-treated preadolescent rats displayed a muted response to a cocaine reward as adults as well as unusual apathy in a forced-swim test, a sign of depression.

In 2008 psychopharmacologist Leandro F. Vendruscolo and his co-workers at Federal University of Santa Catarina in Brazil echoed these results using spontaneously hypertensive rats, which—like children with ADHD—sometimes show attention deficits, hyperactivity and motor impulsiveness. The researchers injected these young rats with methylphenidate for 16 days at doses approximating those used to treat ADHD in young people. Four weeks later, when the rats were young adults, those that had been exposed to methylphenidate were unusually anxious: they avoided traversing the central area of an open, novel space more so than did rats not exposed to methylphenidate. Adverse effects of this stimulant, the authors speculate, could contribute to the high rates of anxiety disorders among ADHD patients…

… In February 2009 neuroscientists Yong Kim and Paul Greengard … injected … mice with either methylphenidate or cocaine daily for two weeks. Both treatments increased the density of tiny extensions called spines at the ends of neurons bearing dopamine receptors in the rodent nucleus accumbens. Compared with cocaine, methylphenidate had a somewhat more localized influence; it also had more power over longer spines and less effect on shorter ones…

Furthermore, the scientists found that methylphenidate boosted the amount of a protein called ΔFosB, which turns genes on and off, even more than cocaine did…

So when I strip out everything else, the bulk of Higgins’ article is coming from 3 animal studies in 2003, 2008, and 2009. All of the studies involved injecting methylphenidate, which is not how it’s used in humans. Injecting Ritalin is a mark of abuse with pretty different pharmacology from oral use.

The most interesting of these articles is Nestler et al in 2003 [2], an article with a rather strange title (emphases mine – incidentally, Nesler is the last listed author, so why did Higgins credit the study to him?) …

Methylphenidate treatment during pre- and periadolescence alters behavioral responses to emotional stimuli at adulthood.

Bolaños CA, Barrot M, Berton O, Wallace-Black D, Nestler EJ.
Department of Psychiatry and Center for Basic Neuroscience, University of Texas Southwestern Medical Center, Dallas, Texas 75390-9070, USA.
Biol Psychiatry. 2003 Dec 15;54(12):1317-29.

BACKGROUND: Methylphenidate (MPH) is a psychomotor stimulant medication widely used for the treatment of attention-deficit/hyperactivity disorder (ADHD). Given the extent of prescribed use of MPH, and because MPH interacts with the same brain pathways activated by drugs of abuse, most research has focused on assessing MPH's potential to alter an individual's risk for adult drug addiction. Data examining other potential long-term behavioral consequences of early MPH administration are lacking, however. METHODS: We investigated the long-term behavioral consequences of chronic administration of MPH (2.0 mg/kg) during pre- and periadolescent development in adult rats by assessing their behavioral reactivity to a variety of emotional stimuli.
RESULTS: The MPH-treated animals were significantly less responsive to natural rewards such as sucrose, novelty-induced activity, and sex compared with vehicle-treated control animals. In contrast, MPH-treated animals were significantly more sensitive to stressful situations, showed increased anxiety-like behaviors, and had enhanced plasma levels of corticosterone.
CONCLUSIONS: Chronic exposure to MPH during development leads to decreased sensitivity to rewarding stimuli and results in enhanced responsivity to aversive situations. These results highlight the need for further research to improve understanding of the effects of stimulants on the developing nervous system and the potential enduring effects resulting from early-life drug exposure.

Why did I say that was a “strange title”? Because an article on rats in a journal called Biol Pyschiatry would normally contain the word rats in the title.

If we simply scaled the dose to humans, but the way, this would be 80 mg (twice daily?!) by injection – which would be a whopping abuse dose in humans. The article has gotten very little attention in the past six years, being cited only four times of which two appear to be reviews.

A related articles query produced a very large number of similar rat studies, including one that, surprisingly, found no effects (surprisingly, because these look like “fishing expedition” studies, when you include publication bias they almost always show some effect.) These are boom times for rat studies of methylphenidate, probably reflecting new NIH funding.

On review I’m left with several only mildly related conclusions …

  1. I’m happy the animal studies are being done. I’d like to see fewer fishing expeditions, and more replication of results. For example, repeat the Bolanos study with a larger group, maybe a different clonal line, and see if the same results appear. These need to be registered studies, so we don’t get messed up by publication bias (which is a huge problem in the low cost animal studies domain). I would really like to see more studies of tolerance effects in rats.
  2. Higgins may turn out to be correct (lots of people are suspicious that stimulants can be used so long, including me) but I think he’s got a crank agenda. His article is more inflammatory than the evidence supports. A more sober article would have been welcome.
  3. You shouldn’t put children on psychoactive medications without a very good reason. Of course that was always true.
  4. Don’t assume any other medications are in any way safer – Ritalin has been studied far more than, say, Stratera.
  5. Scientific American is running out of money. We’ll know they’ve hit rock bottom when they do an article on the scientific evidence for Creationism. They should have known better than to publish this article in its current form.

[1] I have a similar sort of title today, and have had similar roles in the past. In the hierarchy of academia, this title carries less glory than research assistant.

[2] Parenthetically, why does PubMed make it so very hard to find the link to a citation? It’s like they’re trying to hide things.

Monday, July 13, 2009

Autism Society of America: Summer Tips

Last summer we passed on our experience with years of autism on the road. It was tough when the kids were younger, but our last few trips have been fairly agreeable. They even did pretty well when my back put me flat on the van floor for a few days.

We're going for another two week road trip this August, and everyone's looking forward to it.

So we can vouch for some of these Autism Society of America Summer Travel Tips (my comments in square brackets)
  • Plan in advance. Call ahead and inform the airline, hotel, resort and cruise line of the individual’s situation and inquire what special accommodations - fridge, inside room - are available. [We stick with road trips or relatively solitary low stimulation cabins. I don't think we'd try a cruise. Fridge inside the room - definitely. Calling ahead? Never have. It would just make most places too anxious.]

  • Bring the individual’s bedding if you think that will make him more comfortable. [We bring "blankies" and other comfort objects.]

  • Be realistic in selecting vacation destinations with environments you believe the individual can handle. [We like to get experience first in more limited environments. We've gradually extended our airplane distance.]

  • Book low season on a cruise or at a resort so there will be fewer guests and the staff will have more time to devote to your needs.

  • Travel by car if flying or other public transportation seems too difficult. [Definitely.]

  • Choose hotels/motels with kitchen suites or room service so you can eat some of your meals in your room. [Definitely]

  • MP3 players with headphones, loaded with favorite music, can soothe individuals who are disturbed by noises. Personal DVD players can also help make a long trip more enjoyable. [Absolutely, but we stagger them. It's easy to overdose. Music for a while, then books on tape/CD, then one movie a day.]

  • Don’t hesitate to explain the individual’s situation to others you may encounter, including flight attendants, hotel staff, employees at the amusements you visit, and other vacationers. ["Autism" is a good cover story for a lot of things.]

  • Prepare the individual before and during the trip on what to expect that day. [One of our kids needs a pretty detailed schedule, but he's surprisingly good about deviations. He just has to know the plan.]

  • Adhere as closely as you can to the individual’s normal routine. [Huh? The normal routine doesn't involve travel. Maybe they mean bedtime rituals?]

  • Whatever happens, stay calm. [When one parent gets stressed too much, they take a walk. It would be tough to do it solo.]

Sunday, July 05, 2009

The perils of judgment

Take one:
Two children, one dog, one weather beaten father. July day, maybe a bit hot. Lovely though.

One child shouts too much. The other seems old to be so cranky and tearful. Dad seems a bit passive. Really, he should put his foot down.

Parental grade: C-, and that's only because fathers get off easy.
Take two:
Two children with autism and a few more challenges besides. A day of bicycling (yes, and that was a great victory x 2) with Dad to a secret trail, rappelling down a bluff face to the river, playing with the dogs, tossing balls, drawing in the sand, exploring the river, drying sandy feet and managing wet underwear.

Constant negotiation, pushing the envelope of abilities and anxieties. The dog's pretty easy, but she gets upset if she can't see and touch all of her pack - especially when she's in her bike trailer.

Parental grade: Off the charts that neurotypical parents use.
Me, I don't judge nobody.

Thursday, July 02, 2009

Tar Heel Reader - online picture book library

Years ago I thought about starting a web site for friends and families to create short picture books for children with reading difficulties.

I never got very far, but, happily, the University of North Carolina went all the way (their reading center also sponsors the summer literacy program at Camp Courage Minnesota our son recently completed). I've read a few of these online picture books and they're really quite good.
Tar Heel Reader

... Welcome to the Tar Heel Reader, a collection of free, easy-to-read, and accessible books on a wide range of topics. Each book can be speech enabled and accessed using multiple interfaces (i.e. switches, alternative keyboards, touch screens, and dedicated AAC devices). The books may be downloaded as slide shows in PowerPoint, Impress, or Flash format.

You may write your own books using pictures from the huge collection at Flickr or pictures you upload....

... We have books that are intended for teenagers who are just learning to read. You may find some books that are inappropriate for your students; don’t use those. We recommend you learn about the Favorites page as a way to present your students with reading choices that you approve...

.... This site is a result of a collaboration between Center for Literacy and Disability Studies and the department of Computer Science at the University of North Carolina at Chapel Hill.
We'll see how well they work with our struggling reader.

I've asked them if they'll look into a version of the site optimized for an iPhone/iTouch.

Update: they have a blog, but as of 7/3/09 the feed doesn't work quite the way one would expect. Try this URL instead: It worked for me.

Tuesday, June 16, 2009

Behavioral therapy for emotional disorders

This NYT article was about behavioral therapy for so-called "borderline personality disorder", which could better be renamed "emotional disruption disorder" ...
Personal Health - An Emotional Hair Trigger, Often Misread -

... Dialectical behavior therapy, a derivative of cognitive behavior therapy, helps patients identify thoughts, beliefs and assumptions that make their lives challenging and then learn different ways of thinking and reacting.

In effect, Dr. Linehan tells patients, “Your problem is that you don’t know how to regulate yourself, and I can teach you how.” She said thousands of therapists have been trained in dialectical behavior therapy, and many others practice it without special training...
I'm generally sympathetic to cognitive therapy approaches. I like the idea of teaching adults to recognize dysfunctional thoughts and assumptions and manage them directly.

I think all adults learn this as a part of getting wise and wizened, the trick is to teach it more quickly to people who have a harder time learning self-regulation.

Sunday, June 14, 2009

Early intensive intervention in autism - what's the evidence?

In the past six months I've been repeatedly reading about the immense value of intensive early intervention in the outcome of children with cognitive disorders and autism.

This surprised me. I follow the literature from a distance, and I don't remember a landmark study that defined the clinically significant (rather than statistically significant) benefits of intense early intervention. I especially don't remember a study describing the kind of early intervention.

I figured I'd missed something, so I did a quick review and found these studies ...
Turns out I missed .... nothing.

There's no significant new evidence, and damned little quality evidence of any kind to guide recommendations for early intervention of any kind by any party. The "conventional wisdom" about "intensive early intervention" appears to be more wishful thinking than evidence based.

This is damned frustrating. Intensive interventions strain financial and personal resources for society and families. In the absence of evidence we don't know how best to spend that money, time and energy -- on speech therapy, cognitive exercises, early education programs, adaptive sports, parental training, respite care, behavior modification programs, alternative communication strategies, cosmic ray therapy (ok, I made that one up) ...


Ok, now back to our regular programming.

Special needs and mobile phones: Why we're starting young

In our community neurotypical children begin carrying mobile phones between the ages of 10 and 15. Many parents prefer to defer use of a mobile phone as long as possible.

How should cognitive disabilities and special needs affect the timing of first phone use?

Since cognitive disorders such as ADHD and autism may limit abilities to use a phone effectively or correctly, one approach would be to delay or defer use. Of course even a child with strong executive functions can lose a phone, so there are strong economic reasons to delay use.

We've chosen instead to move the use date forward, to the earliest time that a cognitively disabled child is likely to be able to follow basic phone rules.

I was mildly surprised by this. I thought we'd favor delay, but when we thought things through the reasons for moving sooner became quite strong.

We are starting out with a minimal cost phone and a simple pay-as-you-go T-Mobile plan. When the money is spent the phone stops working until we "refuel". For now we share a single number and phone, though if Google Voice ever goes live each child will get a lifelong GV number.

Our reasons to move now are:
  1. The phone is a mild status symbol, a sign of "normality". For a cognitively disabled child status symbols of any kind are exquisitely rare. For us the middle school years loom grimly ahead.
  2. Mobile phones are almost essential now. We can start training in the pre-adolescent/early adolescent years when we have more leverage.
  3. Once our children are able to safely use a mobile phone, we'll be able to experiment with different social and independent settings. They will have more learning opportunities.
  4. The phone will open some opportunities for "at a distance" social interactions; we want to see if this will provide options for our ASD kids.
  5. Mobile phone skills are essential for many employment opportunities. Training early is an advantage.
  6. At this time we can afford to replace a lost low end phone.
  7. Location tracking is becoming common. This is valuable for all children, but especially valuable for children who are easily lost (many Asperger's children).
  8. The future.
The last is a big reason. I've owned an iPhone for a year now. The opportunities to deliver cognitive aids, training materials, and support systems through these mobile- computers-that-you-can-by-the-way-talk-on is immense.

Just as computers opened (fitfully and erratically) new opportunities for blind persons, so too may these technologies allow the cognitively disabled to take on new life opportunities and employment. We want to explore these options and leverage what's available starting now. Some time in the next 1-3 years the child phone will be an iPhone-equivalent.

To improve the chances of return if it is lost we've replaced the "wallpaper" with a photograph of a handwritten plea to return the phone.

Lastly, this is taken from our current "phone poster" ...
Phone Rules

1. Don’t dial 911 unless it’s a serious, real, emergency.
2. Only dial from the Names list.
3. Don’t call the Voice Mail number.
4. Keep the phone in your pocket when it’s not in use.
5. Remember your phone manners.
6. If you break the phone rules you lose your phone day (or days).
7. Only use the phone on your phone day.


1. We know who you call.
2. Anyone you call gets your phone number.
3. It costs us money when you use the phone.
4. If you do well with the phone we’ll add other names to the number list. You will need to pay two stickers for each call.

Monday, June 08, 2009

iPhone 3GS - accessibility, vision, and speech

The iPhone 3GS will be on sale June 19th. It's the first phone/mobile device I know of to market accessibility features. Since it has no physical keyboard, that's arguably overdue.

The accessibility feature set includes UI zoom, speech recognition (commands), screen reader and speech UI. The device also includes a 3 megapixel camera with broad light sensitivity and autofocus including macro focus. The iTouch 3GS, due out in the fall, will have similar features.

This suggests several applications for persons with disabilities:
  1. Magnify text and other sources: This is trivial. The iPhone 3GS will be fun for macro microscopy, but it will also be a very practical text magnifier.
  2. Read text: The iPhone 3GS has sufficient resolving power to turn text images to text, and it can read the results.
The iPhone 3GS is a very interesting platform for delivering solutions to persons with a range of sensory and cognitive disabilities.

Tuesday, May 19, 2009

Sundry notes from a meeting on special needs and the law

  1. Parents of special needs children may wish to initiate guardianship proceedings before a child turns 18. These are typically limited and are reviewed yearly by the courts. They can be reversed at any time.
  2. Adults over 18 can pay rent to parents to live at home, this can reduce income that may count against social security/disability benefits.
  3. A supplemental needs trust can own a home that a special needs adult lives in. (See also: 529 plan problems and special needs).
  4. 529 plan problems and special needs (important)
  5. Relatives naming a special needs child or adult in a will should name their supplemental needs trust as the beneficiary.
  6. Wills should be supplemented by a Letter of Intent that can guide ongoing care and support of a special needs adult or child after the death of their caregiver. This is not a legal document, it is typically a summary of their likes, dislikes, quirks, preferences, etc.

A grave problem with 529 plans and special needs children

Many people fund 529 plans to support a child's post-secondary education or training.

Please consult your attorney before acting on anything here, but our understanding is that this is a problem for special needs children.

The trouble is that if a child has 529 assets in their name when they turn 18, the assets over $3000 mean they will not qualify for disability associated medical assistance until the assets are depleted.

Instead some advisors suggest the creation of a supplemental needs trust (not a special needs trust). These can shelter funds for a special needs adult so that disability and medical assistance support is not impacted.

The supplemental needs trust can also fund education. For example, one could purchase tax free municipal bonds in the trust. The fund trustee, usually a parent or family member, can then use the funds to pay for education or training.

Some employers will also allow certain high income employees to defer compensation. It may be possible to then shift the deferred compensation to the fund. This definitely requires attorney review!

If you already have a 529 plan assigned to a special needs child, it can be shifted to another family member before the child turns 18.

To repeat -- you should not act on anything in this post without consulting a very experienced financial consultant or attorney. For example, Wikipedia has conflicting statements on the topic.

Saturday, May 16, 2009

Software services for cognitively disabled persons

Sure, this is marketed for "elderly" users. The reality is that it's a solution for cognitively impaired persons, it's just that a lot of them are elderly.

Not all though. This approach is what we need for many young adults and adults with cognitive disabilities ...
Easier E-Mail for the Older Generation - The New Old Age Blog -

... Mr. Hughes got together with his business partner, Ali Syed, to design an e-mail system that no senior could resist: no logins or links, no ad boxes or news flashes, no pokes or Twitters — only personal e-mail messages and photographs, with a caregiver making sure that everything is running smoothly. 
They named it PawPawMail and created a Web site, Anyone can use the software for $5 a month and run it on any virtually P.C. or Mac, including old clunkers gathering dust in the back of closets.

... What distinguishes PawPawMail from other programs is that it is a managed system aimed at caregivers as well as seniors. “PawPawMail is built entirely around the idea of two users,” Mr. Hughes said in a recent e-mail message. “The senior user who actually uses the e-mail account, and the caretaker/manager who helps set the senior up, gets his or her address book going, and screens mail from unknown sources to prevent contact from all the ridiculous number of scams that are directed at seniors...
This is something I've hoped to see for some time, and that I've often contemplated doing myself. I hope Mr. Hughes business grows well.

Friday, May 15, 2009

Camp Courage Minnesota: Teaching reading to persons with cognitive disorders

I just came across this 2004 post (which I’d written, but forgotten) …
Gordon's Notes: Strategies for teaching reading to the cognitively disabled
… has a web site with lots of additional material...
Strategies for Teaching Reading to Students with Severe Disabilities
... Dr. Koppenhaver notes that, in his research … he and his colleagues found that the cognitive processes of learning to read for students with severe disabilities are almost identical to those of typically developing students. The only difference is in their ability to demonstrate skills through standard assessment measures.…
.. See also the UNC center for literacy and disability studies.
It reminds me to write about literacy programs for persons with cognitive disabilities.
Our son is enrolled this summer at Minnesota’s Courage Camps literacy camp from June 28 to July 3 (2007 description). It’s directed by Koppenhaver and his students …
… This unique session is for struggling readers (all disabilities), ages 12-18, who would like a positive literacy experience. Educators under the direction of Dr. David Koppenhaver and Dr. Karen Erickson, national literacy experts, will be working with campers to determine literacy needs and intervention strategies to begin to address those needs… Campers must be ambulatory and independent with self-care….

David Koppenhaver's web site is:
Koppenhaver is one busy guy. My wife met with the camp director who’s also a paragon of productivity and energy.

We were concerned the camp would be a bit on the dull side, but the program is pretty appealing for an active teen. We don’t, however, underestimate the challenge of getting our 12 yo to go and stay there.

There really isn’t time for a large amount of reading practice, the core value is the individualized assessment and customized reading development program. The camp also trains local educators, several of whom will teach at Highland Jr High School where my son is going this September. At least one other MN Special Hockey athlete will attend.

Update 6/7/09: We visited the Courage Center Camp in May. It's an amazing facility. I hope to have pictures up and link to them. The camp has a twitter feed and a blogspot blog.

Update 6/26/09: The pictures are on a public Picasa web album.

Update 7/3/09: We're back from camp. The session costs us $800. I think the cost may be adjusted by income, but we're fortunate enough (really) to pay full freight. Our son had a very positive experience. It was his first extended time on his own, and he flew through it, largely taking care of himself. He did much better than we'd expected.

On the other hand, as a reading intervention it wasn't so hot. He tested out much worse than he has at school, which is very depressing. Was he fatigued? Not participating? Or is he truly unable to retain reading skills - or, even worse - are his cognitive abilities deteriorating? I hope it's the first two, but I do fear he rapidly loses reading abilities.

The test results, though tough to hear, are, obviously not a flaw of the program. I was disappointed, however, in how limited the recommendations and prescriptions were. I'm proud of myself for only presenting a glassy smile (ok, maybe a quick grimace) when we were urged to "read lots". (Honest, I didn't scream and I didn't rend my garments.)

We did get a useful referral to the Tar Heel Reader site, and we do know our money went to a good cause, so no regrets. I don't think we'll do it next year though. We need to come up with something different, and I think we'll have to do it ourselves.