Autism and the brain: PSTS and the altruism zone

Functional brain imaging continues to deliver some startling claims.

Follow Me Here...: 01/21/2007 - 01/27/2007

… Researchers at Duke University have shown with functional MRI that the degree of activation of the posterior superior temporal sulcus [PSTS], a brain region activated when people observe others' actions but not perform them themselves, correlated with personality ratings of subjects' degree of altruism…

The capacity to have an interior experience upon watching someone else's behavior similar to the experience of performing that behavior yourself may be a basis of the sense of inherent congruence between others' feelings and thoughts and our own, the ability to have a so-called 'theory of mind', which is an important developmental achievement for humans. As suggested in the article, this body of work may help explicate the neural basis for certain conditions, in which I am interested in my work as a clinical psychiatrist, in which the capacity for empathy or mutuality break down, such as antisocial personality disorder or autistic spectrum disorders.

… Two good starting point reviews of the nascent field of social cognitive neuroscience, which is built on these and similar observations and speculations, are these papers by Rebecca Saxe of MIT (Current Opinion in Neurobiology) and the Friths of London (Science). And, while I was browsing related materials, I came upon this paper by Chatterjee (Journal of Medical Ethics), which you might find intriguing if you are interested in this area at all. ...

FMH has some good links to explore. It’s worth remembering that sweeping claims in the neurosciences have a history of being wrong.

Friendship circle: a volunteer faith-based program of outreach to special needs families

I received a press release today on the “Friendship Circle” a rapidly expanding faith-based (Chabad-Lubavitch) outreach and support program for autistic persons and their families. I can’t vouch for the program, but I’m ok with passing on the press release and and a note from their web page. I’ve not heard of anything like the “Weinberg Life Village” — it certainly sounds impressive! (emphases mine)

Children challenged by Autism, other disabilities share laughter,  love and life lessons with Teen volunteers

West Bloomfield, MI:  The Friendship Circle now embraces over 4000 members internationally and includes a 22,000 square foot facility built by love, and it all grew from the simplest of questions, first posed in 1994.  "Who in the world is most in need of a friend?"

The first voice that came from the community was a mere whisper, but was finally clear. It came from a child.  A child challenged and isolated by unusual physical, mental, or emotional needs is missing a most important ingredient in the recipe for happiness, a friend to call their own.

It was not to be the only answer. As the Friendship Circle sought teen volunteers to develop as special friends of the little ones, it became clear that the gift of friendship enriched both parties. Teens grew and bloomed from the simple acceptance and unconditional love they experienced from their younger friends. As one teen volunteer phrases it, "When I am with these children I feel calm and soothed. I know there are no judgments being passed. I know they don't care what I look like...together we live in the moment, enjoying each second of each other's company". Or as another teen puts it, "I have learned that one hour a week is enough to change a life forever".  Teen volunteers have gone on to establish new Friendship Circle chapters near their colleges just to continue to enjoy the special bond they share with their young friends.

There was yet another answer to that original question. Parents of the special needs children were given the gift of a few hours each week when they knew their children were safe and being entertained by a friend. That precious time might be spent in activities as mundane as paying bills or having an uninterrupted telephone conversation, but are a gift by any measure. "We love our daughter unconditionally, and to know that others love her as well, even with all her behavioral difficulties, brings such a sense of peace to us", writes one mother.

Just twelve years later, a tiny 3 non-profit program that began with just eight volunteers in the Detroit area has grown to include more than 50 chapters across the U.S., Canada and Australia. It has also built, through private contributions, the 22,000 square foot Meer Family Friendship Center in West Bloomfield, Michigan. It was developed by consulting with a group of parents of children with special needs, therapists, educators and professionals from around the world.  The heart of the Friendship Center is the Weinberg Life Village, which gives the children and their friends the opportunity to practice activities such as banking, scheduling and keeping appointments with the salon, dentist or doctor, navigating traffic signals and buying tickets for the 22 seat movie theater. All this is in preparation for their eventual integration into society. Unlike the real world, there is no hurry, and skills can be practiced again and again. Best of all, they have a great time..

"Our mission for 2007 is to expand our circle of friends", states Executive Director Rabbi Levi Shemtov, "There is so many more programs that we can start and more families and volunteers that we can embrace if we would have more charitable funding. We feel confident that the organization has reached a place where it is ready to grow on many levels."

 For more on the Friendship Circle, please visit www.friendshipcircle.org, local chapter links can be found at www.friendshipcircle.com.

There’s more about the organization on their web site. They have expanded a bit beyond special needs …

The Friendship Circle - About Us, http://www.friendshipcircle.org/page.aspx?pid=47

The Friendship Circle provides assistance and support to the families of children with special needs as well as to individuals and families struggling with addiction, isolation, and other crises.

In addition to helping those in need, the Friendship Circle empowers and enriches its network of volunteers, the majority of whom are teenagers, by enabling them to reap the vast rewards of giving of themselves.

The Friendship Circle was founded in 1994 by Lubavitch Foundation of Michigan, a branch of Chabad-Lubavitch. Since then, the Friendship Circle has been providing assistance and support to the families of children with special needs as well as to individuals and families struggling with addiction, isolation, and other crises through our Daniel B. Sobel Friendship House.

The Friendship Circle is committed to serving all members of the community regardless of religious affiliation.

In addition to helping those in need, the Friendship Circle empowers and enriches its network of volunteers, the majority of whom are teenagers, by enabling them to reap the vast rewards of giving of themselves.

The Friendship Circle consists of five parts - volunteers, children, parents, staff, and supporters. The true beauty of the Circle is how all of the elements link together to form a seamless community of friendship.

Just as a circle has neither end nor beginning, our community offers promise, hope and love that have no bounds. Who can say who benefits the most from the Friendship Circle programs - the child with special needs who learns how to ride a bicycle, or her parents who get a much needed break, or the volunteer whose spirit soars to new heights?

Through a wide range of services, projects and facilities, including the Morrie and Sybil Fenkell Volunteer Club and the Friendship Circle Fellowship Program, the Friendship Circle is able to touch the lives of thousands of people each year. The success of the Friendship Circle has inspired similar programs throughout the United States and Canada. By offering guidance and instruction to these organizations, the Friendship Circle is able to welcome many more families and volunteers into its midst.

The Meer Family Friendship Center was opened in 2005 – home of the Ferber Kaufman LifeTown building (opened in April) and the Daniel B. Sobel Friendship House (opened in September.)

The majority of the Friendship Circle’s innovative work with children with special needs takes place at the Ferber Kaufman LifeTown building, a 20,000 square-foot state-of-the-art facility, which serves as a therapy and activity center, social meeting place, and hub for our network of volunteers, professional staff, and supporters. The most striking feature of LifeTown is the Weinberg Life Village, a unique, interactive world where children with special needs, our Special Friends, can have fun while they practice important life skills through role play.

At LifeTown, children with special needs and their parents and siblings find a place that has been specifically designed to meet their needs. LifeTown is more than a community center or a therapeutic facility—it is a house of friendship.

The Chabad-Lubavitch are a branch of Hasidic Judaism with a strong emphasis on emotional connection, community interaction, and the integration of good acts with spiritual observance. Jewish clients might anticipate a certain amount of quiet (or not so quiet) proselytizing, but Christians and atheists would probably be left alone. I don’t know how they’d do with Islamic clients.

Scientific American on the "pillow angel"

The News Editor for Scientific American comments on recent media excitement about the care of a severely disabled child: Pillow Angel Parents Deserve Credit, Not Blame: BLOG: SciAm Observations. I agree.

Lesson: No black keyboards for the visually impaired

I learned a lesson, that I passed on via an Amazon review:

Amazon.com: Microsoft Digital Media Pro Keyboard: Electronics

I bought this keyboard under unusual time constraints for my mother's Mac Mini. Yes, Microsoft does supply a quite good driver driver for OS X that enables all the features.

As an OS X keyboard it's not bad if one remembers to turn on F-Lock (OS X makes good use of function keys but XP does not, which is ironic if one knows the history of the function key). There's no 'eject' button but it's easy to remap the 'Messenger' key to be an eject button. It has a sleep and logout button that are very handy; note that the the modern Mac keyboard lacks both of these.

The main problem for an elderly or visually impaired person, however, is that the black keyboard with white lettering just doesn't work. It's also very complex and daunting with lots of special functions of dubious utility, and some of the most useful buttons (sleep, log out) are tiny. The numbered favorites occupies a lot of wasted space and are pretty worthless for most of us.

Not a bad keyboard, though a bit whizzy and silly, for most OS X and XP users. It's not a good choice for the elderly or visually impaired however.

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

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.

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.)

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.

• 15" and 1024x768
• 17-20" and 1280x1024

The 19" 1280s look more promising, though there really very few options ...

• 19" Samsung LCD, 1280 x 1024 for about $250 might work ... It has both VGA and DVI, but I think it's almost unavailable.
  
• AOC LM960 is another budget 19" LCD at 1280, but it's working display is probably smaller than the Samsung.
• HP Pavillion F1905E
• HANNS-G JC-199D
• FUJIPLUS FP-988D

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
http://www.access-one.com/rjn

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.

NYT on polypharmacy in the young

I imagine Gardner Harris started this New York Times Health review thinking he'd expose a terrible practice of indiscriminant medication of the young. However he began, its obvious by the time he'd met with a few families and experts he'd been humbled. These families and children are suffering greatly; there are no good answers.

The one lesson we can all draw is humility. The title "proof is scant" is unusually well chosen and inarguable. We just don't know. Each of these children is an experiment of one.

If we funded psychiatric research in this country (the GOP appears to have an ideologic opposition to pyschiatry) we'd treat each child as an experiment, and gather every bit of data we could on risks and benefits in a national database with robust privacy protections (anonymized data). We definitely can't rely on the pharmaceutical companies; we've found negligence and possibly fraud in their research practices in the past few years.

Until we get a government that respects science in general, and psychiatry in particular, progress will be slow indeed.