Saturday, December 30, 2006

Autism: 8th most popular Google news search

Ahead of the 2006 NFL draft, but behind Martina Hingis:
Google Press Center: Zeitgeist

1. paris hilton
2. orlando bloom
3. cancer
4. podcasting
5. hurricane katrina
6. bankruptcy
7. martina hingis
8. autism
9. 2006 nfl draft
10. celebrity big brother 2006

Saturday, December 23, 2006

The special needs pendulum swings: parents at fault again?

If Carey had written this in Parenting as Therapy for Child’s Mental Disorders (NYT):
And now, some researchers and doctors are looking instead at how very superior parenting skills can help children with cognitive abilities do better with fewer medications ...
I'd have been encouraged. Alas, he wrote:
And now, some researchers and doctors are looking again at how inconsistent, overly permissive or uncertain child-rearing styles might worsen children’s problems...
The choice phrasing tells us a lot about Mr. Carey, or his editor's, true beliefs. The "bad parent" meme is comforting for those who mistake an easy child for superior parenting skills.

I'll mine the story for anything valuable, but first, my own prejudices - based in part on the literature and in part on experience. I suspect children can be sorted into 3 categories:
  1. Type I, neurotypical: Does well with even the most haphazard parenting, assuming love, caring and a safe home environment.

  2. Type II, focal and well defined cognitive disorder and isolated ADHD, Asperger's or high-functioning Autism: A personalized but reasonably stable mix of positive and negative reinforcers requiring at least twice the parenting input of the neurotypical, as well as professional assistance. This is what the article is describing.

  3. Type III, complex behavioral and cognitive disorders: Parenting books are good for a bitter laugh. Experienced and reputable professionals are quick to say the problem set is beyond their experience, the best try to help with a referral. A successful outcome is uncertain. Parenting input is four to five times the neurotypical and parental burnout must be actively managed. Professional assistance is mandatory but will require an exceptional skillset. The behavioral and medication program requires continuous quality improvement with active monitoring, feedback, review and modification. Interventions are often empiric -- experiments that are implemented based on measured results.
Now that I've vented a bit, is there anything of value in the article? Here are my excerpts, with emphases and links added. I've carefully deleted the language where the author's yearning for "discipline" leaks out ...
... In a study involving 128 families, psychologists at the university had found that about a third of parents who completed the program saw enough improvement in their children that they had decided that medication was unnecessary. The other two-thirds put their children on stimulant medication at school but at doses significantly lower those typically prescribed, said William Pelham, a psychologist who is director of the Center for Children and Families at [the University of] Buffalo and the senior author of the study. Eighty percent of the families who participated in the program, with follow-up parent training, decided that their children did not need medication at home.

.... Behavior modification for A.D.H.D. and for related problems, like habitually disruptive or defiant behavior, is based on a straightforward system of rewards and consequences. Parents reward every good or cooperative act they see: small things, like simply paying attention for a few moments, earn an “attaboy.” Completing homework without complaint might earn time on a Gameboy. Parents remove privileges, like television and playtime, or impose a “time out,” in response to defiance and other misbehavior.

And they learn to ignore annoying but harmless attempts to win attention, like making weird noises, tapping or acting like a baby.

... family-based programs insist that parents try to maintain a clear, neutral tone when instructing their children, or penalizing them.

Bluntness, for example, is a virtue. Saying to a child, “Would you put your toys back in the box, please?” turns a command into a question. Saying, “Let’s put your toys back in the box,” implies collaboration. An unadorned “Put your toys back in the box” is clearer for everyone, psychologists say, especially so for a child who is highly distractible.

... Their instructions to Peter and Scott became more precise, as well. Saying “Clean your room” is too vague and covers a half-dozen tasks, Roman Popczynski, the boys’ father, said. Peter might wonder where to start, or just decide it was too much to worry about, and give up, his father said. “Put your laundry in the hamper” is much more likely to get results, he said, and lead to the next clear step, like “Put your toys where they belong.”

Multiple commands are also confounding: “Put away your crayons, clear away the table, and organize your homework, please” leaves a child wondering which to do first, and whether it is too much work to finish.

... Like most who try to use behavior modification techniques, the Popczynskis relied on a daily report card to keep a running tally of Peter’s specific problem behaviors, like wandering attention, ignoring commands or defiance, and his efforts to correct them.

For instance, at the beginning, Peter, then 7, would get a check mark every time he ignored more than two commands to do his homework, put away his toys or brush his teeth, but he would earn immediate praise if he got started. He received check marks when he slid off his chair at dinner, and earned approval if he stayed seated.

At bedtime he accumulated marks if he pulled delay tactics. A tantrum resulted in instant punishment: a timeout of 5 to 10 minutes, shortened for good behavior. The report card was posted on the refrigerator.

The Popczynskis started slowly. They measured how many marks Peter recorded in a normal day, and at first rewarded him if he reduced the number by even one: with an extra 15 minutes on Game Cube, for example. If he had more good days than bad ones over the course of a week, he got to choose from a bag of toys from the $1 store.

Mr. and Ms. Popczynski continued to raise the standard, one checkmark at a time, until Peter hit zero consistently.

“You want them to be able to succeed,” Mr. Popczynski said. “If you make it too hard, they’ll just give up, and so will you.”

The Buffalo program is more comprehensive than most: psychologists run a summer camp here, employing the same principles, and, during the school year, regularly visit the teachers of every child in the program. Those teachers who agree to cooperate — most do — keep daily behavior report cards for the child too, in effect providing full coverage for a child’s every waking hour.

... The Popczynskis did well in part because Peter’s difficulties were not severe, he was a capable student and his most disruptive behavior came out at home, Mr. Popczynski said. And the couple were able to share the many duties.

... Researchers have also studied a different approach to behavior treatment, called cognitive behavior therapy. This approach engages children directly, and signs up parents as helpers. The children meet in groups to speak with a therapist, and learn elementary ways to identify and manage their anger, frustration and hopelessness. The parents learn in sessions how to reinforce those lessons at home.

Studies find that up to three quarters of children who suffer from depression, anxiety or obsessive-compulsive disorder find relief of their symptoms with the help of this kind of therapy, which usually involves once-a-week sessions for a few months or so.

... “You can’t let your foot off the accelerator with something like behavioral modification for A.D.H.D., for example,” said Dr. Gabrielle Carlson, director of child and adolescent psychiatry at Stony Brook University School of Medicine, who used the treatment for her own son. “It’s like making changes in diet and exercise to lose weight: you don’t lose 20 pounds and then you’re home free and can eat ice cream and cake again. No, it’s a complete lifestyle change, and when you have a child with any of these psychiatric difficulties you have to stay on the program, for as long as it takes.”
The gap between the facts of the story, and the framing of those facts, is so large I wonder if the drivel came from an brain-dead editor rather than the journalist -- in which case Mr. Carey has my sympathies.

The behavioral modification and cognitive therapy interventions were appropriately presented in the context of specific conditions for which they're most appropriate. The Popczynskis are clearly doing 2-3 times the work of the standard parent, and they have had good success with a child how has a focal disorder, non-severe problems, and is academically successful -- exactly as one would expect.

The descriptions of the Buffalo program match the "state of the art" as we know it, though this approach needs modification for the Type III child. Emotional neutrality is not too hard to maintain when a child has merely shattered a family heirloom, rather harder in the midst of a sibling assault. Note that the teachers almost always were supportive of the programs, I suspect the best and most experienced teachers find the program merely formalized their routine practices.

I hope the behavior modification program becomes more widely available and continues to be covered by insurance programs. In the meantime, the center's web site has some resources to explore.

Update: Alas, the Buffalo program's website is just a skeleton, the 'resources for professionals' section is empty right now. Maybe later ....

Update 1/7/06: Mr. Carey responded to my inquiries. He did write the entire thing, so no editorial malfeasance. Alas, he didn't have the slightest understanding of my concerns, but the note was polite.

Sunday, December 10, 2006

Configuring a simplified computer: OS X shines again

Years ago there were child-oriented GUI overlays for Windows 3.1. Now there's nothing. Configuring a simplified or 'safe' version of XP is about impossible.

The Mac situation is much better: Configuring a simplified OS X machine: Simple Finder.

This is a good solution for younger children, elders (we'll all be there if we're lucky), and anyone overwhelmed by the staggering complexity of modern computer systems. Alas, there aren't a full suite of applications to match the Simple Finder -- maybe soon? (I need to play with Front Row and the Apple Remote a bit more to see what one can do with those.)

Saturday, December 09, 2006

Autism no more -- the end of a diagnosis

The diagnosis isn't quite dead, but it's in the ICU:
Entrez Nat Neurosci. 2006 Oct;9(10):1218-20. Time to give up on a single explanation for autism. Francesca Happe, Angelica Ronald and Robert Plomin are at the Institute of Psychiatry, Kings College London, De Crispigny Park, London SE5 8AF, UK.

... We argue that there will be no single (genetic or cognitive) cause for the diverse symptoms defining autism. We present recent evidence of behavioral fractionation of social impairment, communication difficulties and rigid and repetitive behaviors. Twin data suggest largely nonoverlapping genes acting on each of these traits. At the cognitive level, too, attempts at a single explanation for the symptoms of autism have failed. Implications for research and treatment are discussed...
A diagnostic concept that doesn't correspond to etiology, manifestation, prognostic course or therapeutic intervention is, clinically speaking, useless. The diagnosis of autism will remain important as a label for obtaining research funding, for creating budgets, and for obtaining resources for care and treatment; but as a clinical concept it's on its last legs. We'll have to come up with new ways to think about a large variety of neurobehavioral disorders. Schizophrenia, as a concept, is in similar shape. Sometime in the next 20 years they'll both join 'dropsy' and 'soldier's heart' in the bin of discarded diagnoses.

This is very good. In science as in books of magical fantasy, power begins by knowing the name of the enemy....

Seeking: LCD with 60-80 ppi/dpi at optimal resolution

Who would ever want a 17" LCD display with a 1024x768 native resolution?! It's so wrong. It's likely to only have VGA input, probably barely works with a modern OS, and most people would want at least a 1200 or 1400 pixel horizontal resolution at this display size.

Ahh, but what about persons with diminished vision? OS X 10.4 does not scale the UI very well. XP seems to do a bit better with changing font dpi settings, but it doesn't hold up in real world use (too many apps expect a fixed dpi). LCDs don't run well at anything less than maximal resolution, and that resolution expects 80-120 dpi. I want about 60-80 dpi for the person I'm buying for (macular degeneration, post-lens replacement, etc).

I think a 17" LCD with a 4x3 aspect ratio and 1024 horizontal might do, but they're dreadfully hard to find. I might do better with a cheapo 19-20" squashed" (16:9 or 3:2 - DVD friendly) form factor with 1200 horizontal ...

Update 12/9/06: Turns out NexTag is great at this sort of thing. I really need to pay more attention to them. Alas, I can't find a 17" with 1024, 15" is the largest display.
The 19" 1280s look more promising, though there really very few options ...
Suggestions welcome!

Update 12/11/06: See the comment describing the value of the 20" iMac display with the Ctrl-mouse wheel zoom feature. A usenet comment from rtn corrected my assertion about LCDs and sharp display -- with a DVI interface the display is also sharp at integer fractions of the maximal resolution (edited slightly):
LCDs produce sharp results at their native res, and also typically at integer fractions thereof, if you use a digital connection, like DVI or HDMI.

Get a 1600x1200 and run it 800x600, or 1920x1200 wide* and run it at 960x600.

Using a 30in 2560x1600 at 1280x800 is also a possibility, and you wouldn't even need a dual-link DVI card.

* First make sure the graphics card/chip can be configured to emit custom resolutions, as 960 horizontal isn't exactly std.

Regards, Bob Niland
In practice 17" CRTs are still on the market that will cost less than a 1600x1200 LCD panel, and they're sharp at a wide range of resolutions, so this probably won't affect my buying decision this time around. In future, however, as 1920 resolutions become commonplace, the 960 horizontal option for persons with vision limitations will become relevant.