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.

Autism after childhood - a profile of Donald Gray Triplett

Impressive.

John Donvan and Caren Zucker, writing for The Atlantic, have profiled Autism’s First Child - Donald Gray Triplett now aged 77.

Unlike some other media portraits, there is no doubt Mr. Tripplett has lived with one of the 10-500 variants of brain development we call "autism". Indeed, he and his caregivers defined the syndrome. The writing is respectful and sympathetic, but not sentimental. Mr. Triplett is not typical, but then is any autistic person typical?

Somehow, despite the story of an autistic savant who grew up in Forest Mississippi, they never mention Forrest Gump. I understand why they dodged that trap, but there's more than a passing resemblance.

The article is a legitimate work of science, in the same sense as Atal Gawande's analysis of medical cost variation for the New Yorker. This kind of qualitative study can't be published in today's shriveled medical journals, but this is work that identifies the failures of our presumptions.

Mr. Triplett, for example, learned to golf at 23 and to drive at 27, and he became a compulsive international traveler at 36. He never, however, became "normal". This article illustrates how poorly we understand the lifelong natural history of the injured, healing, and evolving brain.

The article also introduces us to the somewhat spectrumish researcher Peter Gerhardt. Gerhardt, a speaker for Spectrum Training Systems (WI), is one of the very few American researchers who studies autistic adults. (Yes, medical science does have structural problems.)

Gerhrdt, we're told, is developing a "program" focused on "adolescence to adulthood" at New York's (ABA intensive) McCarton School.  I followed up on that lead, but unfortunately he doesn't have a blog, though he does have a public Facebook page.

Dr. Gerhardt appears to have some ongoing relationship to the Virginia based Organization for Autism Research, the "only autism organization which focuses solely on applied research".

This is must read material for autistic persons, friends, families and caregivers. It's also a posthumous testament to the mad skills of Donald Gray Triplett's parents.

Google Scribe for special needs writing?

I'm typing this post with helpful from Google Scribe. As I type I get a popup list that lets me type a number or hit enter to autocomplete my sentences. It even suggests phrases based on what I type. I used to use something like this on my old Palm III; it was helpful there but it's somewhat distracting when I have a keyboard.

Lee Matthews has a good description ....

Google Scribe bookmarklet puts powerful autocomplete anywhere you enter text on the Web

... Ever wish you could leverage the power of Google Suggest anywhere?...

Those users might want to check out Google Scribe, a slick new Labs offering that brings Google's suggestion magic to any text entry field on the Web. Just visit the Scribe page and drag the bookmarklet onto your bookmarks bar, head on over to your favorite social site like Facebook or Twitter, and give it a go!

Once you click your bookmarklet, you'll see an activation notice appear. As you type, Scribe will display a drop-down list of suggestions, just like Google's search box does. You can press Enter to apply the first suggestion or 1-0 to pick any option in the list (or use your mouse if you prefer). Google Scribe also offers sorting options, and you can set it to "always on" or "on demand" mode...

For my test I installed the Google Chrome scribe extension, but I believe the bookmarklet will work with Safari. You hit Enter to accept the top suggestion with a space, a number to choose another, Esc to hide suggestions and tab to choose without a space.

I think it will work even if you're not logged into Google, though I expect a future version will learn from the words someone uses.

This technology is obviously helpful when doing small device text entry, but for a special needs writer with limited spelling skills it may be very interesting at all times. I'm going to try it with my son the next time he's working (under intense direct supervision!) on his Facebook page.

Lessons from two family bicycle outings

We did two family bike outings [1] recently. One was a flop. The other was a great success.

We have few pictures of the flop, lots of pictures of the success. The children watch the pictures on various screens. That's how we create (false) memories of perfect childhood.

"What is the secret to happiness, Oh Exalted One?" said the student.

"Editing." said the master.

The fiasco came first. Actually, it wasn't a fiasco -- but only because we bailed.

"What is the first lesson of special needs adventures, Oh Great One? said the student. 

"Know when to fold 'em" said the master. 

We should have known better. Actually, we did know better. I just forgot. I chose a new route we'd never explored. I didn't measure distances carefully. I didn't adjust when the weather turned hot and humid. I wasn't sure of the exact route, so we I revealed anxiety inducing uncertainty early (the captain must always know). I didn't outline the rules well enough, and I didn't specify queuing order.

Inevitably we had meltdowns. Mercifully the wisest one declared it was time to bail, even though I wanted to push on. We got back to the car, drove for ice cream, didn't have a bad day overall. Hours of preparation, 25 minutes of riding, but it could have been a lot worse.

When we did the postmortem it we knew we were off our game. Time to do better. We'd registered for the big St Paul Classic bicycle tour, so we knew another chance was coming. This time we remembered our lessons.

We studied the route in detail, using direct surveillance and satellite images and maps. We tracked the forecast. One week before the ride, in good conditions, we took the kids for our target distance on a representative stretch. We planned a van drop off point, so the kids would ride the target 6.5 miles without a turnaround. I took son #1 from our house to the start 1 day prior, using a route I'd researched and memorized and printed for him. We took all the kids for a car tour of the entire route -- so that two of them would know the full route was too long.

We had snacks. We had liquids. We had firm queue rules - son #1 and son #2 to be separated by mother #1. Son #1 had a phone in a saddle bag. Everything was ready in the garage.

On the day of the ride we were dynamic -- adjusting departure to suit son #2 morning malaise. We adapted and returned to the plan.

It was fantastic. Every child met their goal tired and happy. Son #1 did the 17.5 mile loop - even I got some exercise when I sprinted from the van group to catch him. (He could go ahead because he's oddly cautious and he's a wizard with  his iPhone -- not something that fits his measured IQ).

Complete victory. Based, of course, on lessons from a fiasco.

Some people have to spend a fortune to climb Mt. Everest to test themselves and rise to great challenge. We only have to register for a bike ride. An unexpected advantage of the special life.

[1] Teaching two kids on the spectrum to ride bikes was one of the substantial achievements of my life.

Rethinking neuropsychiatric diagnoses

I started bemoaning the classification (aka ontology, nosology) of neuropsychiatric disorders about 8 years ago. I'm not the only one. One of the things I liked about Greene's Explosive Child book is that he is clearly unimpressed with the DSM IV nosology.

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).

The clinical implications are what matter to most of us. Autism is a fine diagnosis for getting hugely beneficial school and family services, but if it leads to pure therapeutic choices or misguided interventions then it's harmful. If we lump too many conditions into one bucket, we risk choosing the wrong interventions because they don't match the bucket.

I'm hopeful that over the next decade we'll see a revolution in thinking about neuropsychiatric disorders, and the evolution and diversity of mind. We'll become more empirical about what works and what doesn't, and recognize that the brain at 8, 14, 17, 20, 30 and 40 may be very different. We'll always need classifications, but they may be more akin to "Ritalin responsive" than to "ADHD".

Progress has been slow, but it's coming.

Brain scans for autism diagnosis - a lesson in press interpretation

There will probably be some discussion about a diagnostic test for autism that sounds very accurate ...

[citation needed] - trouble with biomarkers and press releases

... The latest issue of the Journal of Neuroscience contains an interesting article by Ecker et al in which the authors attempted to classify people with autism spectrum disorder (ASD) and health controls based on their brain anatomy, and report achieving “a sensitivity and specificity of up to 90% and 80%, respectively...

It's being marketed as a screening test for autism.

Not.

In a technical but very well written post Tal Yarkoni adds to a takedown by Carl Henegan writing for the Guardian (he's Director of the Center for Evidence Based Medicine at Oxford). Briefly, it's interesting science, but the spin is a load of hooey.

Yarkoni and Henegan walk through the basic statistics of pre-test and post-test probability. I say "basic" because the math is high school, but there's nothing simple about the underlying concepts. Most physicians learn them for an epi exam, and forget them within a week. The true summary of the research is "The method relies on structural (MRI) brain scans and has an accuracy rate approaching that of conventional clinical diagnosis."

So, no, it won't be useful for screening any time soon. On the other hand, it might be a big help in understanding many brain disorders, and even in redefining the classification of developmental disorders of the brain.