The expectations trap

Four months ago we learned lessons from two family bicycle outings. One was an educational failure. The follow-up was a memorable success.

No denying, I was proud of that one. I wouldn't have thought it possible just three years before. If we weren't willing to risk failure, we wouldn't established a new baseline.

That's why I was willing to try another crazy idea. This time we tried a mass nordic ski event after dark in unfamiliar territory. This went well beyond last year's Nordic ski resort.

We applied what we'd learned. We studied satellite maps of the ski route and the surrounding territory, developing and revising our primary and backup plans. We researched parking in detail. We took a car and drove the route at night -- that's how we learned event map's major parking area was now a massive hole in the ground. We adjusted our plans accordingly. I took both our special needs guys with me on the event day to collect our race bibs -- so they could see the parking and starting area in daylight.

We left early on event day, which meant we got the prime parking garage rather than our fallback option. At the event we adjusted plans; one of our guys needed to race, so we aborted a rendezvous and left ten minutes early.

It was easy. The only glitch was a bit of overheating while fussing with race bibs indoors. I expected to need more of our contingency plans. As it was, I had only to track the son who's prone to getting lost. His brother with the oddball savant visual abilities raced far ahead, and, as expected, materialized from darkness whenever we reached a stopping area.

It was easy, but maybe it was too easy. Now I need to wonder if I've fallen into an expectations trap.

The expectations trap is what happens around 9th grade in most schools. Instead of the slow, tedious, work of developing reading and other academic skills, teaching focuses on "social skills". These can be fun for all involved, but for some it's too easy. They could do better. The expectations trap is inside the comfort zone; it closes options too soon.

I think I need to move my expectations up.

 

National Sports Center for the Disabled - summer and winter recreation in Winter Park, Colorado

Colorado's National Sports Center for the Disabled is an amazing resource.

... Founded in 1970, the National Sports Center for the Disabled's mission is to positively impact the lives of people with any physical or mental challenge through quality adaptive recreation programs in over 20 sports. The NSCD’s impact on lives is direct, immediate and visible. Over 23,000 lessons are provided annually...

The NCSD is located in Winter Park Resort, Colorado (map info - route 40 west of Denver). They serve our community ...

ADD, Amputation, Arthritis, Autism, Behavioral Health, Bone Disorder, Brain Injury, Cerebral Palsy, Deafness, Developmental Disabilities, Diabetes, Down Syndrome, Epilepsy, Fragile X, Hemophilia, Learning Disabilities, Little People, Multiple Sclerosis, Muscular Disorder, Muscular Dystrophy, Nerve Disorders, Neurological Disorders, Paraplegia, Post-Polio, Quadriplegia, Respiratory Disorder, Spina Bifida, Spinal Cord Injury, Stroke, Substance Abuse, Vision Loss/Blindness...

Of course the winter activities (2010 brochure) are amazing. It's the place I'd take my family for a snowboarding or skiing vacation. The NCSD will arrange for travel package reservations and they offer scholarships. They offer the "NCSD Broome House" condo reservations particularly for NCSD participants.

There are summer options too (2010 brochure)...

... NSCD Sports Camps, rafting, kayaking, canoeing, special camps, horse pack trips, therapeutic horseback riding, mountain biking, overnight river trips, fishing, camping, and rock climbing...

Definitely a resource worth remembering.

So why am I just learning about This now? It's been around for forty years.

There's something broken somewhere ...

What can we learn from extreme dog training

Two stories about what dogs can learn.

The first is about teaching word sounds to a border collie. It is, as best anyone can tell, a true story.

Dog Might Provide Clues on How Language Is Acquired

He bought Chaser as a puppy in 2004 from a local breeder and started to train her for four to five hours a day. He would show her an object, say its name up to 40 times, then hide it and ask her to find it, while repeating the name all the time. She was taught one or two new names a day, with monthly revisions and reinforcement for any names she had forgotten.

... In three years, Chaser’s vocabulary included 800 cloth animals, 116 balls, 26 Frisbees and a medley of plastic items...

... The 1,022 words in Chaser’s vocabulary are all proper nouns. Dr. Pilley also found that Chaser could be trained to recognize categories, in other words common nouns. She correctly follows the command “Fetch a Frisbee” or “Fetch a ball.” She can also learn by exclusion, as children do. If she is asked to fetch a new toy with a word she does not know, she will pick it out from ones that are familiar...

The second story is from The Awl (via Brad DeLong)...

It’s a week before the biggest day of her life, and Anna Williams is multitasking. While waiting to hear back from the Ivy League colleges she’s hoping to attend, the seventeen-year-old senior at one of Manhattan’s most exclusive private schools is doing research for a paper about organic farming in the West Bank, whipping up a batch of vegan brownies, and, like an increasing number of American teenagers, teaching her dog to use an iPad.

For the last two weeks, Anna has been spending more time than usual with José de Sousa Saramago, the Portuguese water dog she named after her favorite writer...

Anna takes José Saramago’s paw in her hands and whispers in his ear. He taps the iPad and the web browser opens. José Saramago gives a little yelp.

“It’s entirely conceivable that a dog could learn simple computer functions,” says Dr. Walker Brown, the director of the Center for Canine Cognition, a research facility in Maryland. “Word processing, e-mailing, even surfing the web: for many dogs, the future is already here”...

Alas, the second story is a parody. It is fiction. After reading the first story though ...

Given enough time, patience, and interest a dog can learn the rudiments of language. It goes slowly. It takes insane persistence (Is Pilley Aspergerish?), but one word a day adds up over time. I'm sure someone, somewhere, is now training their dog to use an iPad. They will make the Awl story partly true (maybe not the word processing though).

There are lessons for those of us who work with special needs children ... teens ... and adults.

My eldest's verbal processing tests at the pre-primer level. He reads at somewhere between third and fourth grade. And yet, he does truly remarkable things with his iPhone. He continues to learn. HIs learning is slow, but faster than Chaser. Alas, he's not as keen -- unless one were to count the increasingly sophisticated iPhone games he plays.

Alas, he has only a few years of formal education left. I have some concerns, even now, about how much will be done in the next few years. "Life skills" are needed, but he is not going to stop learning at 19. I think, given time, he could read at the fifth or sixth grade level -- which starts to work him into the normal range. I suspect he'll never have strong receptive language, but he may do more with reading and writing. He already converses more effectively by text than by spoken language.

His digital skills are exceptional -- an order of magnitude better than some of his linguistic reasoning skills. There are things to work with.

Somehow I have to figure out how he will continue to be taught, and to learn, until he's at least fifty ...

Victory: The war against 20th century psychiatric diagnoses is all but won

I started rabble rousing about the fallacies of psychiatric classifications (diagnoses, nosologies) about eight years ago. Five years ago I went public, since that time I've labeled 29 posts as "diagnostic definition" related [1] including my most recent rant...

... We're due for another DSM edition, but I doubt that will be any better.

The good news is that in the last 8 years it's become clear to every researcher that all of the common neurospychiatric conditions, from "ADHD" to "ODD" to "Autism" to "Aspergers" to "Bipolar disorder" to "Schizophrenia" are very rough categorizations of thousands of different "phenotypes" (where a phenotype is the end-result of the interaction between genes and environment) that are themselves dynamic over the lifetime of the brain. (Even after adolescence, we see major changes in schizophrenic symptoms between 20 and 50.

Over the last 3 years we've seen that many different combinations of diverse gene variants, combinations, "malfunctions" and prenatal genetic express modification can produce superficially similar clinical presentations that we squeeze into the garbage bins of "mental retardation", schizophrenia, and "autism spectrum disorder". Most surprisingly, many brains with extraordinary genetic disorders appear normal.

This classification problem isn't simply an annoyance for researchers and industrial ontologists. It has important legal, educational, financial and, yes, clinical implications. The legal, educational and financial implications are large but outside the scope of this post. Suffice to say there is a reason that the diagnosis of "autism" has exploded while the diagnosis of "mental retardation/DCD" has shrunk (clinically speaking both diagnoses are about equally useless)...

I think I can stop now. When Scientific American starts to talk about the problems with our current classifications of mind and brain disorders the war is over (emphases mine) ...

Slipping the 'Cognitive Straitjacket' of Psychiatric Diagnosis

...  In a recent article in the American Journal of Psychiatry, a Swedish team of researchers led by Paul Lichtenstein studied 7,982 twin pairs. They found a heritability of 80% for autism spectrum disorders, but also found substantial sharing of genetic risk factors among autism, attention deficit hyperactivity disorder, developmental coordination disorder, tic disorders, and learning disorders.

In another recent article in the American Journal of Psychiatry, Marina Bornovalova and her University of Minnesota colleagues studied 1,069 pairs of 11-year-old twins and their biological parents. They found that parent-child resemblance was accounted for by shared genetic risk factors: in parents, they gave rise to conduct disorder, adult antisocial behavior, alcohol dependence, and drug dependence; in the 11-year-olds these shared factors were manifest as attention deficit hyperactivity disorder, conduct disorder, and oppositional-defiant disorder. (Strikingly, attention deficit disorder co-occurs in both the autism spectrum cluster and disruptive disorder cluster.)

... , DSM disorders do not breed true. What is transmitted across generations is not discrete DSM categories but, perhaps, complex patterns of risk that may manifest as one or more DSM disorders within a related cluster. Second, instead of long-term stability, symptom patterns often change over the life course, producing not only multiple co-occurring diagnoses but also different diagnoses at different times of life.

Please read the above excerpt. I tear up looking at it.

This is progress! This is what Osler did for medicine in around 1900 when he tore down the outworn and deceptive strictures of 19th century medicine. He had to throw out the old ideas to move medicine forward. At long, long, last psychiatry, and neurology, are ready to be refactored.

The battle may rage for years, but the war is done. It's just mopping up now.

Now we can move forward.

[1] Greene's Explosive Child, by the way, led the way in 2005 by setting aside non-useful ICD-9 and DSM classifications in favor of a label that tied symptoms to effective management.

Schizoprhenia and a suspicious retrovirus

Researchers have long looked for an infectious cause of schizophrenia, especially because of a relationship between a child's birth month and the later development of schizophrenia. The focus though has been on a maternal infection.

Now there is interest in an endogenous retrovirus as a contributing factor in the development of schizophrenia. This virus is present in the DNA of most of us, though there might be secondary infections triggers that would activate a quiescent retrovirus. It's quite speculative, but noteworthy.

Naturally everyone who wasn't already looking for an endogenous retrovirus in autism will redouble their efforts.

As always, there's a large caveat about this type of research. Autism and schizophrenia are labels we place on a variety of cognitive disorders that likely have diverse causes, courses, and therapies. Even if this early work bears fruit, not all of what we currently label "schizophrenia" will be related to a retroviral infection.

The hardest behavioral intervention

Our Husky mix loves to play hide and seek. She stalks the gate, bolts through an opening, and runs with joy. She races across the neighborhood then hides for the seek. She cannot be seen, she is a natural predator. She'll do this for an hour or so, waiting for us to walk nearby then bolting past us.  Eventually she's sated, and she comes to us. Until recently she got a treat on the return, because our expensive experts told us that's what we needed to do.

Running, playing with the pack, eating the treat. Doesn't get better than that. We spent more money than I care to think about on this problem, consulting with the best experts. None of the expert advice worked.

Kind of like with our eldest. Almost everything that's worked with him we invented.

Lately, we've been trying the hardest behavioral intervention of all our our mutt. Doing nothing. Extinction is the technical name, it's how to train husbands, exotic animals, and special needs persons. When she runs, we don't pursue her. We leave the gate open. We go for a walk. We wait. It's painful because, of course, there are cars out there. Even very smart dogs don't really understand cars; even seeing eye dogs don't get them.

She's coming back sooner now. We greet her with subdued affection and without treats. If she survives the cars, I think this will work. Of course if she ever actually ignores an open gate and comes to us, she will be rewarded. (We also stopped playing chase games. That was my bad.)

Dogs and humans - same difference. We're in a good spot with our #1 child now. It's been that way for a few months; but there was a bad time before it. There will be more bad times ahead; probably worse than those we've known. That's our life. It's a way go get old fast, and maybe wise too.

During this good time, we've been applying extinction methods on some obsessive behaviors that caused us significant distress. We don't deny the behavior, instead we a version of it officially approved and regulated - though with an undertone of muted disappointment. We've stripped the behavior of all emotion and context. It's not gone entirely; it may never go. It is, however, very much diminished.

Extinction is a good behavior modification technique. It's very hard to apply, but sometimes you have to go with what works.

Apple's iPad/iPhone App store has a special education section

The iPhone/iPad App Store has a section devoted to special education. I was able to find some announcements from the end of October, so it's quite new.

There's a lot there, from sign language to communication to accessible readers to language development apps.

This opportunity to market and sell focused special needs apps could be a very big development. I'm excited, I've written before about our own experiences with my son's iPhone, including the weaknesses in iPhone parental controls. He's probably moved beyond most of these offerings, but we'll be examining them in more depth. (Lately he's been using the money to earn to buy games, which is an improvement on using it to buy candy.)

Livescribe Echo note taking pen - records and indexes lectures

Journalists love the Livescribe Echo smartpen, a pen/recording/digital ink combo. It's a bit of a specialty item for journalists, but for Asperger's and other special needs students I can see how it might be helpful.

See:

• This column will change your life: Note-taking | Life and style | The Guardian
• The Pen Gets Mightier - Magazine - The Atlantic
• My new favorite gadget: Livescribe Pulse pen - James Fallows - Technology - The Atlantic
• Livescribe Echo Smartpen Lets You Do Almost Everything | Gadget Lab | Wired.com

Understanding a different mind: memory organization and receptive language

I wrote about my son's memory and processing disabilities two days ago. Today I read a Zimmer article on the routers in our brains, and how consciousness goes offline during even simple decision making tasks. I think we'll hear more about this "router" dysfunction hypothesis, particularly in the context of autism, schizophrenia and other disorders of cognition and consciousness.

The "offline when making decisions" model is something I'll be watching for in him.

Understanding a different mind: memory organization and receptive language

As my oldest son moves into his adolescence, his mind continues to change. Observing him, I get new insights into how his mind works.

He has a pen pal now, a young woman who is studying special education. She started writing him as part of a school program, and has continued on. She is a wonderful correspondent.

My young adolescent tells her stories to impress her. They aren't, however, true stories.

They are generally plausible stories, no more or less impressive than the things he actually does. Often they are things he has done, just not things he has done recently. On the other hand, he omits adventures that I, in his place, would certainly include.

I think he's dissembling a bit, but mostly I think he doesn't really remember what happened yesterday. He may remember it in detail six months from now, but at the moment it's lost to him. So, like an Alzheimer's patient, he fills in the gaps. He tells a story.

His memory dysfunction is a profound handicap all by itself.

His inability to process speech is probably related to this memory dysfunction. It's not usually obvious to anyone, even to us, but he struggles to process  even relatively simple sentences. He will often react negatively to a request, but, if he's given a minute or two to think about it, he will usually reverse himself. I think he needs time to try to reconstruct the sentence, to understand its meaning.

Curiously, as his reading slowly improves, largely due to his email and texting, his written communication is becoming stronger than his verbal communication. He understands ideas that are written as words better than the same ideas spoken aloud. He can read and reread printed text, gradually building understanding and reinforcing his limited short term memory. Spoken words are hard to reprocess.

He has other disabilities, but also some useful strengths. He's quite good with his iPhone, and with software and devices of every variety. Already his calendar, which I can edit from my desktop, is turning into a history of what he has done as well as what he is going to do. He takes hundreds of pictures of construction vehicles (an obsession), but in time the phone photo library will become a history of things he has done, places he has been. We often discuss things by text message; I think he finds that easier than spoken communication.

The phone record, including a record of where he and his phone are, may have other value as he gets older. Many cases of false imprisonment seem to involve people like him, people with such disordered memories that they can choose guilt for any crime. His prosthetic phone memory may protect him.