Thursday, May 25, 2006

The case against corporal punishment - revisited

Gordon's Notes: Using pain to prevent secular humanism is really about corporal punishment in general. It's very relevant to the care of special needs children, who may not respond in expected or predictable fashions to the usual parenting approaches.

Monday, May 15, 2006

Minnesota Special and Sled Hockey: 2006/2007 Season

The MN Sled Hockey association had a beta trial last fall, and they're read for a full season:
Minnesota Special and Sled Hockey: Minnesota Sled Hockey Web Site

The Minnesota Sled Hockey Association has a web site! They're taking registration info for the 2006/2007 season.
Great group with great leadership. (No comments on the photographer, that was me :-).

Saturday, May 13, 2006

Adaptive ballet

I'm pretty familiar with adaptive sports, but not with adaptive ballet. The world of ballet has always seemed fundamentally harsh and cruel -- no place for an "imperfect" child. In this case a therapist found a way around the cruelty of the ballet ...
Given a Chance to Be Little Ballerinas, and Smiling Right Down to Their Toes - New York Times By COREY KILGANNON

With its practice bar, mirrored walls and lush orchestral music, the small dance studio in Bayside, Queens, seems like countless other ballet schools that nurture the dreams of little girls.

... this studio holds one special class a week for dancers whose movements do not exactly exhibit the refined control of a prima ballerina. There are no lithe leaps, perfect pirouettes or pointed toes here. Most girls cannot walk or stand, much less make a shallow curtsy. Their crutches and walkers lie nearby and their customized ballet slippers are stretched over leg braces.

The eight little ballet students, who have cerebral palsy and other debilitating physical conditions, are assisted in class by teenage volunteers with strong healthy bodies and infinite patience. The teacher is Joann Ferrara, a physical therapist who owns and runs Associated Therapies, where most of the girls go for treatment.

... "Every little girl wants to be a ballerina, and my daughter wanted to know why she couldn't," said Maria Siaba, whose daughter Veronica, 7, is in the class. "I would bring her into a ballet school and they said, 'We can't accommodate her.' Outside, I'd have to explain to her that she couldn't do what all the other girls are doing."

For an hour a week, Veronica and seven other girls from Queens escape a world plagued by awkward physical motion and enter a room where elegant music is played and they get a taste of movement that is graceful, smooth, supple and refined. Ms. Ferrara teaches only the basics of ballet. The girls do not perform full pliƩs or pirouettes, and they are lifted for leaps...

... "I just want them to feel the sheer joy of moving and to be proud of themselves," Ms. Ferrara said. She began the dance class three years ago after hearing repeated laments from the families of girls she treated. "The parents all said their daughters wanted to take ballet like all the other girls, but no ballet schools would accept them," she said.

She recruited a group of teenagers to assist the dancers and paired them up. Most pairs have been together ever since....

.... The girls had their annual recital last Sunday in the auditorium of the Mary Louis Academy in Jamaica Estates. Backstage, assistants were pulling ballet slippers over the bulky plastic sheathing and hinges of leg braces, and helping the girls put on white tights and pink tutus. Pink fuzzy tiaras were adjusted and pink tambourines and fairy wands were distributed. The dancers were bursting with excitement as they checked their makeup and hair in the mirror.

Monica resolved that during the recital she would try to stand for the first time in front of her dad, John Chaffardet, who was in the audience.

Veronica sat in the lap of her helper, Christina Arfsten, 16, of Flushing, and said her favorite ballet was "Swan Lake" because "it's about a girl who works very hard and never, ever gives up."

The audience included some of Ms. Ferrara's other patients, who watched proudly and shed tears of pride, not pity. For the finale, "When You Wish Upon a Star," the dancers held shiny paper stars. When the music stopped, Jessica held hers aloft and yelled, "Yea, we did it."

The audience bathed the girls in cheers as Ms. Ferrara handed each ballerina a red rose. Monica held her rose in one hand and used the other to steady herself with her ribbon-wrapped cane. Heather gently released her and beamed as she stood by herself, held up by applause and her father's quivering smile.
If you're not teary eyed at this point, you have a heart of stone.

Autism reviewed

Update 5/13: Since first writing the post I've kept below, I've realized that the review bothers me.

I think I know why; it's fundamentally superficial, if not supercilious. The reviewer assumes a mantle of perspective and wisdom, but on reflection he seems more haughty than wise. His pretended compassion rings false, his professed admiration of "heroic parents" smells of gratitude for a burden avoided.

The truth is, a child that does not connect with other children can still have deep ties to their loved ones, even if their "snuggles" are fleeting. A child with an obsession for pattern and structure can still be sweet, kind, funny, charming and loving -- and not only to his (or her) parents.

A child who has a full (by human standards) range of emotional capabilities can, in contrast, still be nasty and spiteful. An adult who is autistic can be a good friend and honorable, an adult who is not autistic can be vile. The disorder, or the lack of the disorder, is not the person.

The parent of an autistic children may be heroic (or not), but this is not unique. There is a vast amount of suffering in the world. Only a privileged and lucky few in the wealthy world grow to adulthood without a good serving of pain. Most of us bear burdens, even joyful burdens, and perhaps to bear them well is somehow a credit, but it is not a rare thing.

-- Original Post

The London Review of Books has a fairly extensive discussion of autism. Parts of it are good, parts are confused, parts are bad. It doesn't hang together all that well. Worth a quick scan. He does bring up one of the more interesting questions -- what really is the natural history of autism?

I've a hunch that autistic behaviors wax and wane during a child's life (makes it darned hard to tell what's really helping or hurting) but that many higher IQ autistic children will show significant improvement given a reasonably supportive environment .....

Tuesday, May 09, 2006

Autism and facilitated communication

A SCIAM blogger has a good review of thestate of "facilitated communication" as a method for helping autistic persons communicate their thoughts and needs. I think respectful and sympathetic skepticism is indicated, along with a willingness to look for benefits, irregardless of actual mechanism. Physicians know many "placebo" treatments are powerful and valuable. The tough question is how much to pay for them.

Thursday, May 04, 2006

Pten gene knockout and "autistic" mice

[See the updates. The BBC article is misleading about why this is important.]

Knocking out a gene in mice [suspected to be involved in some autism in humans] creates a wide range of behavioral disorders that bear some resemblance to a part of "autism" in humans:
BBC NEWS | Health | 'Autistic' mice offer gene clue

... The University of Texas team looked at mice where the Pten gene - which has already been linked to other brain disorders - was deleted in the mature nerve cells in the cerebral cortex and hippocampus areas of the brain.

These regions are associated with higher brain function such as learning and memory.

The mice behaved in a number of socially abnormal ways, compared to another group of mice from the same litter.

The genetically altered mice were socially less skilled, being far less likely to be curious about new animals coming into the cage.

... The genetically altered mice were also less likely to build nests or look after their young, but were more sensitive to stressful stimuli, such as loud noises or being picked up.

An examination of their brains showed they also had the increased brain volume and enlarged heads seen in people with autistic spectrum disorders.
At the least this will help us with understanding how the brain works and develops. It is way premature to suggest a connection with autism. Removing the visual cortex also impairs one's social responses; social function is very high level and requires a lot of things to work properly. Any cognitive knockout will impair it.

We should hear fairly soon if there's a subtype of "autism" (whatever that is) that has problems with this particular gene, and whether it somehow affects "mirror neurons" (whatever they are) more than other neurons.

Update 5/4/06: I googled on [Pten Autism]. Turns out there's reason to suspect this gene is related to the 'big head' subtype of autism in humans. The researchers were probably doing the knock out in mice to f/u on that theory. So the connection is more plausible than the BBC report alone suggests. I search on [Pten "mirror neuron"] finds the two terms appearing on news pages together, but as of this moment I didn't get a hit that found a specific mirror neuron problem related to Pten. My old speculation has been that "mirror neuron" depletion might be a secondary response to a deeper defect, a kind of "salvage" or "scavenging" response to a deeper injury.

Update 5/4/06b: Ok, I'm sorting this out. I think this is big news in the near term. If these researchers have created a "mouse model" for a subtype of autism then we've made a big advance in understanding and either preventing or (less likely) treating autism. It's impossible for a non-evil society to experiment on humans, or even primates. We still consider mice to be fair game. They reproduce quickly, their cheap, and we understand their biology very well.

Monday, May 01, 2006

Preventing schizophrenia: not yet

A study testing whether schizophrenia in teenagers could be prevented has failed. It didn't tell us the treatments don't work, it did tell us the approach is not practical today.

We need better ways to identify young people with incipient schizophrenia, and safer drugs with fewer side-effects, before we can try this again.

I don't know what makes pyschiatrists think early treatment would prevent development of symptomatic schizophrenia. Maybe it's entirely too early for this sort of study. Do we really know enough about the disorder?