Tuesday, December 28, 2010

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) ...

...  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.

Wednesday, December 01, 2010

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.

Thursday, November 25, 2010

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.

Tuesday, November 23, 2010

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.)

Saturday, November 20, 2010

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.

Thursday, November 18, 2010

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.

Tuesday, October 19, 2010

Autism after childhood - a profile of Donald Gray Triplett


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.

Saturday, September 18, 2010

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.

Saturday, August 21, 2010

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.


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.

Friday, August 13, 2010

iPad, iPod Touch and iPhone in autism

When the iPad was first unveiled last January, one excited blogger wrote ...

Gordon's Notes: Computing for the rest of us: The iPad and the ChromeBook
... Think about your family. If it's big enough, your extended family will have at least one person who's, you know, poor. They may have cognitive or psychiatric disabilities. Or you may have a family member who, like most of American, can't keep a modern OS running without an on call geek. These people are cut off...
By 2011 the combination of a $400 iPad (and iTouch for less) and $15/month VOIP access will start to replace a number of devices that are costly to own and acquire, while providing basic net services at a rate that other family members can subsidize. Not to mention something pretty, which, speaking as someone who grew up poor, ain't a bad thing.
Steve Jobs - friend of the poor and the outcast. I wouldn't have guessed (ok, so I did predict this a year ago)..

Since then I've noted how well an iPad can work in practice for special needs persons (most elderly people are special needs, but don't tell them that) and I've configured an iPad-mini (aka an iPhone) for an adolescent with autism, ADHD, anxiety and low IQ.

Now we're reading slightly breathless reports of magical interactions of autistic persons with the iPad environment. I suspect there's some hype and wishful thinking going on, but I also believe there's some reality. These platforms are bringing communication and support technologies to populations that were previously unserviced. They are also making it possible for neurotypical non-geeks to deploy and maintain these tools at a price most families can afford.

The current iPad generation still require a desktop computer (relatively modern PC or a Mac). That's a serious roadblock to widespread deployment. There's no technical reason for this, but there may be business reasons. Apple may be unwilling to wipe out their legacy devices sales just yet. I think there's a 70% chance, however, that iPad 2 will not require a desktop device.

If you have the money and the geekiness, there's no real issue with buying and using an iPad 1.0 with your special needs person of any age (do read my writeup on the iPhone for special needs adolescents though). For most people, however, the iPad 2 or iPad 3 will be more interesting. You want to watch for a device that doesn't require a legacy desktop machine. (In our new world, Windows 7, for example, is legacy.)


Monday, August 09, 2010

Adolescent computing - the iPhone and iOS solution

I've written over 30 posts about computer use and the low IQ special needs child. Now I'm dealing with computer use and the low IQ ADHD/Explosive special needs adolescent. This has some special concerns.

One is vulnerability. Most special needs adolescents are vulnerable netizens, susceptible to abuse, fraud, and manipulation. This is also true, incidentally, of many neurotypical adults and most elderly adults.

Another issue is judgment and self-control. This is an issue for any adolescent (was for me, anyway), but for the "explosive child" external restrictions are particularly important. Unfortunately recent changes in net technology (https, multiple data streams, etc) have broken a lot of parental control software. OS X parental controls, in particular, are utterly broken.

Even as one computing platform wanes, however, another waxes. The iOS (iPhone, iPad, iPad Touch) platform is a better match to the needs of many special needs children and adolescents. You can read about one iPhone setup through this post and related links.

The first steps are to active iOS "restrictions", including disabling Safari, YouTube and App installation. The next steps are to add apps that further the parental agenda, while engaging your special needs child. These are some of the apps we use (note despite his disabilities my son has a knack for software, not all persons of similar IQ will use the same apps):

  1. Calendaring: His iPhone Calendar app shows our family calendar, school calendar, and his calendar as well as birthdays and holidays. He is very anxious when he doesn't know his schedule. The calendar anchors him. He can edit it, he can see what's coming up. All calendars synchronize to Google Calendar feeds. (See setup link, above).
  2. Contacts: I edit them for him on our Google App domain. They help him remember people. I will show him how to add pictures to them.
  3. Notes: He likes to make notes in the basic app. I will introduce Dragon Dictate soon to make note taking even easier.
  4. iPod: His music of course, but also all loaded with ultra-high quality educational documentaries such as BBC's 2001 documentary "The Blue Planet" ($6.40 for 8 hours). When he's dying of boredom he can now watch TV even without a data connection. Some TV, that is. (Cue evil parental laughter.)
  5. Camera: He loves to take pictures. I do need to monitor this. Not all his pictures are equally appropriate.
  6. Maps: Learning his environment.
  7. Google Earth: obviously
  8. Weather, Clock (timer is valuable), Light, Calculator, Voice Memos -- all frequently used.
  9. NYTimes - he reads the sports (follows the Mets).
  10. Public Radio - so far he hasn't used it.
  11. SkyVoyager and Star Walk: wishful thinking. He won't use these without some thought from me.
  12. Games -- all serving some educational end - Checkers, tChess Lite, UNO, Solitaire, Virtuoso (piano), Matches (memory), MemoryMtrx (short term memory), Mental Maths and Math Drills.
  13. Wolfram Alpha and Wikipanion: Homework aid without Google search.
  14. MobileMe iPhone location: we know where his phone is, anyway.
In future posts I'll update and revise the list of helpful apps.

Update 8/10: I received a comment praising the use of a browser product, "mobicip" that claims to substitute for Safari on the iPhone.

Unfortunately there are two reasons to be concerned about this product.

The first is that comment was fraudulently submitted. It purported to be from a user, but "DrJim" was a link to the vendor site. The comment appeared to be machine generated. These techniques violate Google's terms of service, and they are a good marker for a fraudulent enterprise.

The second reason is that mobicip's pricing is deceptive. In addition to the product purchase you must sign up for an annual subscription to get the "whitelist" functionality you truly need.

A NYT times bits post has the best available information on this topic from a source I trust. In addition to mobicip they mention:

If I had to choose one I'd look first at iWonder Surf.

Update: In the space of a week this $@! kid of mine has found two loopholes in the security I set up. He discovered that Google Earth has a wikipedia layer, and that clicking on those links triggers an embedded browser than runs when Safari is disabled. He eventually found ways to navigate to places he's not allowed to go. Then he found that a suite of utilities included, for no good reason, the ability to run iGoogle within the app.

Sometimes I wonder about quite low IQ test results.

Thus far he's been so delighted in his discoveries that he shares them with me. I reward him with for the invention, but then delete the app. (Good-bye Google Earth.)

Update 8/28/10: Wikipanion bit the dust. He found some interesting topic pages and pictures. Too bad there's no World Book app. A surprisingly large number of apps have embedded WebKit browsers that are not disabled when Safari is disabled. Apple needs to provide parental controls for disabling WebKit use. I wish Apple would hire me to run their parental controls effort.

Update 9/20/10: #$#$%! Public Radio.app has a $#$@ embedded web browser. Forget the thesis of this post, Apple's iPhone parental controls are as broken as can be. The good news is my son delights in showing them to me. When you have a sub 5th percentile measured IQ, and read 3 grade levels behind, it's a real confidence builder to show your Dad you've outfoxed his security.

Update 10/31/10: Today he was caught again. This time he'd learned to use the New York Times.app search function, then to click on a hyperlink, then to escape to full web search. I've stripped every non-Apple app from the phone. This really is a serious problem.

Update 9/20/2013: Many years later, iOS 7 finally fixes the webkit hole.

Sunday, August 08, 2010

Cognitive evaluation and motivation - trickier than it looks

One of my sons has substantial measured cognitive disabilities including base IQ and a range of social functions. By most recent evaluations he's borderline "mentally retarded". (A nasty phrase that's enshrined by legal statutes. Of course there's no true binary state, this is all continua.)

Which is why our titanic struggles over his misuse of internet resources are puzzling. This ought to be the mismatch of the decade. In every measure of knowledge and cognitive measurement there should be no contest between him and me.

And yet it is a struggle. Mostly I win, but he wins some too. He's proven OS X Parental Controls, for example, are utterly broken. (I have more to write about iPhone for special needs adolescence. There's more promise there, starting with disabling Safari and YouTube.)

Yes, he has a knack for software. It's not savant level, but he might be 60% for age -- that's far beyond his other cognitive skills. It's not only that however. He can be very inventive in solving the problems I create for him.

It has something, I think, to do with his alien motivations. He's not particularly motivated by neurotypical concerns like parental approval or even peer approval. This means he barely exerts himself in measurement settings where most people would at least make a go of it. Where he is motivated, therefore, he performs significantly better than his testing would suggest possible.

Of course in most domains he can't perform in the neurotypical range no matter his motivation, but the reality of his peculiar (and highly problematic) motivational structure does mean most testing will underestimate his maximal abilities (though they do predict his performance in the settings we care about).

I suspect he is not unique.

Sunday, August 01, 2010

Treating autistic symptoms with oxytocin

Oxytocin plays some roles in human social behavior and empathy. Back in 2005 I wrote about the possibility of using this in autism treatment.

Alas, five years later the studies are still pretty modest -- Promoting social behavior with oxytocin in high-fu... [Proc Natl Acad Sci U S A. 2010]

Since the drug is off-patent, there may not be enough money to motivate research and production. Frustrating. We need better treatments ...

Tuesday, July 27, 2010

Minnesota Online Special Needs Directory

It's published by Jenzi Silverman at the UMN Dept of Educational Psychology. It's very plain -- there's not even notation of last revised date. I don't find the organization terribly useful, it's crying out for an embedded Google search box, but it's the only place I found an (obsolete!) link to the interesting Eagan ProAct agency that works on employment skill development.

Clearly I need to create a custom google search for MN special needs resources and show Jenzi how to embed it in her directory page. More on that soon (I hope).

Monday, July 26, 2010

iPad for special needs

Gordon's Tech: Grandma's iPad - A user guide and review was written for low vision elderly, but there's a substantial intersection between the needs of the elderly and those of special needs kids and adults.

Sunday, June 27, 2010

Managing screen time limits - a new tactic has some success

We've had good success with trading time limited computer access for behavioral goals. We've had a problem however when the time is up. It's very hard to stop, especially during a game.

I'm sympathetic, but with this sort of thing our son does better with firm boundaries. On the other hand, this has led to some difficult battles. As the #1 son moves further into adolescence, it's harder for Mom to enforce rules.

Still, this is a battle worth fighting. Tracking time, recognizing a deadline, then overriding the desire to continue are great executive function exercises. It's push-ups for his frontal lobe.

Recently I've had some success with flipping the problem around. As well as punishing him for going past his time limits, I'm rewarding him for finishing early. He gets to rollover unused minutes, and he gets three stickers (8 stickers = 10 minutes computer time) if he finishes before the timer completes*.

This has worked better than expected. We remind him prior to logging him in, and we remind him about about 4 minutes before the end. He's getting good at ending 1 minute early (or a bit less, since he knows we round up. There are times I wonder about how accurate his IQ testing is.)

Eventually, if he continues to succeed, we'll dial back on the reward but he'll always be allowed to rollover unused time.

It's surprisingly hard for us to come up with these judo moves; it's easy to get stuck in a pattern of confrontation.  When they work though, it's satisfying.

* We use a visual timer that has become popular in the special needs population.

Adolescence - continued ...

It would have been nice if our pediatric endocrinologist had been right and we had been wrong. Nice, but unlikely.

So our eldest guy with disabilities both a teen and physiologically adolescent. We've moved into phase II of the "great game" of his life.

It is a good time to review the objectives we've held since studying the most important book every written.
  1. Avoid serious irreversible harm to others.
  2. Avoid serious irreversible harm to self.
  3. Avoid America's well funded special needs residential care program
  4. Maximize the cognitive skills that will be most useful to him in work and in life. Reading and social intelligence of course, but also leverage his relative gift for technology use.
  5. Maximize his physical health and personal happiness.
  6. Find the best possible adult residential arrangement with the most feasible independent living option.
  7. Find him employment he enjoys.
  8. Set up a support system that can outlive us.
See also

Wednesday, May 26, 2010

Adolescence and beyond

The years go by.

One SNC (special needs child) is doing very well. So well his teachers want to end his services and his IEP. We think they're premature, so we're negotiating for measurable milestones. If he passes those then we're ready to try the next grade without services.

Teachers and administrators have as much trouble with measurable milestones as, for example, software developers and physicians. Measurement is painful

Another SNC is also doing well in many ways, though we do not expect him to live without services. His written expression has improved greatly thanks to excellent teachers, and perhaps due to his fairly regular texting. He's done so well at texting that we've gone to an unlimited texting family plan. I hate the $360/year cost, but it's cheaper and more effective than paying for a writing tutor or for OT work. Too bad I can't pay for the family texting out of my health flex plan.

We're working through typical adolescent issues. We've had some luck with language modulation by setting up a sticker reward system for a day without any banned words. His siblings quality 100% of the time, my son hates it when they get a column of stickers (computer time or money) and he doesn't. Over the past two months this program has, to date, largely eliminated the paint blistering language issues we had.

I continue to be bemused and surprised by his computer skills. My wife is in the 98th percentile on her medical board exams (she used to be 99th but now practices very part time), but my low IQ son is much more skilled than she on our computers. He has an intuitive grasp of how software works, and delights in finding gaps in Apple's not-entirely-robust parental controls system.

Similarly he shifted fairly easily from a not-too-friendly Nokia phone to a user-hostile Windows Mobile phone. This is a peculiar facility we can use. (I'm inclined to buy him an iPhone. The two drawbacks are that for his demographic iPhones are both uncool (geezer phones) and very quickly stolen (for sale to geezers, presumably).

Our thoughts now look seven years ahead to supported living arrangements and to the possibility of residential occupational training programs. A colleague's son is entering one of the latter programs and I'm researching whether anyone is developing similar programs in Minnesota.

Monday, May 03, 2010

Understanding an unusual mind

One of the pop-psychology characterizations of autism is that it's a "model of mind" problem. Persons with autism, it is said, cannot "model" the minds of others. This is sometimes associated with claims that autistic brains have "mirror neuron" defects, and that "mirror neurons" are the physiological foundation for "model of mind" functions.

I call this "pop psychology" because it's very hard to test this class of theory. We simply don't know enough about how the brain works. My own personal speculation is that brain assembly is always problematic, and in the micro-evolutionary process of adapting brain infrastructure to "reality" various subsystems are repurposed (sacrificed) -- including those involved in modeling other brains.

Whatever the eventual utility of the "model of mind" theory, I find it useful to create my own model of my son's mind (actually not just one son's mind, but I'm simplifying here). It's a very different mind from my own, so I have to be thoughtful about how I model it. I can't use my own mind as a template for how his works. He has very different ways of "making decisions"; he has different values, different needs.

Creating a model of his mind is an iterative process. I make assumptions, test to failure, and revise. He changes too, and I have to revise my thinking. In this I'm guided by my three top special needs references:
  1. 3 Steps to Yes: The Gentle Art of Getting Your way (Gene Bedell) - particularly important for the adolescent phase of life
  2. Greene - The Explosive Child
  3. Training exotic animals - a short NYT article - see also Kazdin
  4. Be the Best You can Be: Reading about autism and ADHD - our personal favorites
My current model of his mind might be useful to those who need to create their own models of different minds. Here are the key aspects and some working implications of them:
  1. He needs to know where he is in time. If he doesn't know, he becomes very anxious. He needs to know the detailed schedule for the day, and he needs to know the upcoming week to months schedule in less detail. It has been helpful to put paper calendars up with the high level timeline, and to give him a Google Calendar account that emails him daily agendas and sends appointment reminders to his phone.
  2. He needs to know where he is in space. He becomes agitated in environments where he is not confident of his navigational ability (example: forest trails). GPS is our friend, since with it I can demonstrate good navigational ability. We work with maps as well. In new areas, I try to do extend familiar ground rather than introduce entirely new routes.
  3. He is not strongly motivated by the feelings or opinions of others. He feels some need to please selected persons, but this is a small fraction of the motivation felt by neurotypical children. This is a significant challenge.
  4. He doesn't like to see his siblings, or even strangers, upset. He can be quite sympathetic. This seems contradictory to #3, but if the upsetting force is him he's more likely to be agitated than sympathetic. Similarly his family is extremely important to him, but that doesn't necessarily change his behaviors.
  5. He is motivated by near term rewards where the rewards are experiences he likes (treats, computer time, his movie pick, etc).
  6. He is not motivated by money. Money tends to bother him, he feels compelled to spend it immediately.
  7. He very often feels aggrieved and badly done by in comparison to his siblings. He doesn't easily translate relatively privilege limitations or time outs to his actions. This seems partly a cause and effect problem.
  8. He is currently unable to understand the concepts of "trust" and "reputation". He does not understand that people will predict his likely future actions based on his past actions. This is a significant challenge but I think he can learn this. It is an educational focus.
The more I can model his mind, the better I can discover levers that can change his behavior. So I keep testing my model, and refining it.

Sunday, April 18, 2010

Suspect with little evidence: The action of psych meds on injured brains is unpredictable

Another in a series of things I suspect but cannot prove ...

I suspect that the actions of psychiatric meds on injured brains cannot be predicted.

If this were true, it would not be surprising. It's hard to predict how psych meds affect even intact brains. In the injured brains of autism, mental retardation, and (presumably) schizophrenia we expect to find unusual neurotransmitter distributions, injured connections with recovery bypass routes, and areas of atypically high and low activity corresponding to injury and compensation.

If this were true, it would not mean we should avoid these meds. It would mean that we should look for unexpected side-effects, and perhaps be cautious about how we interpret response and failure. It would also mean that medications might be unexpectedly effective in atypical contexts.

Anyone know of any research on this? I doubt any research exists, there's unlikely to be funding for it.

Tuesday, April 13, 2010

iPad for accessibility – and special needs?

Josh de Lioncourt has written a review of iPad use for visually impaired persons. He’s pretty positive, though reading between the lines I’m guessing version iPadOS 4.1 will be much better (4.0 is due out this fall, I expect 4.1 @ Feb). It does seem like Apple turned a corner with the 3GS iPhone; previously they’d taken a big step backwards with the Classic to OS X transition.

An essential feature for visually impaired persons is VoiceOver, Apple’s robust screen reader. These same technologies are also very helpful for people who struggle to read. Voice commands help those who struggle to write, and predictive text entry helps students who have trouble typing.

The same features that make the iPad accessible to a large number of Americans who don’t use computers well also make it interesting to the special needs community. It is relatively simple to use, very easy to maintain, and much more resistant to virus infection than traditional computing devices.

The next generation iPad will almost certainly support video conferencing (that’s far more likely than adding a camera). There are many uses of that kind of technology in providing support to special needs teens and adults.

It’s a new world indeed.

Sunday, April 11, 2010


My daughter leaves Zen Shorts out each night for her dolls to read.

One of the parables retold is about fortune. This moment's fortune may be the future's misfortune; this moment's misfortune may be tomorrow's gift.

Yesterday we came within an inch of life shattering tragedy. There was an unlucky accident born of special needs adolescence.


The cost was small compared to what might have been. Lives have changed, judgments have been revised. Yesterday's future is gone, today's future is new.


You never know.

Thursday, April 08, 2010

Persuasion, adolescence, and the joys of prison life

Low IQ special needs adolescence does not come as a "thief in the night". It comes as a ton of bricks.

Behavioral management, which was never terribly effective, has become even less effective. We may still have a "paradoxical permission" effect, whereby when we give permission for an annoying behavior it becomes less attractive. I'm not sure we have even that however.

Medications are still available, but of course side-effects may be less tolerated.

Which is why I'm turning, with a measure of desperation, to my favorite sales book: Three Steps to Yes: The Gentle Art of Getting Your Way by Gene Bidell. I hope I can use some of Bidell's techniques to change my son's choices.

Bidell emphasizes understanding your Prospect's recognized and unrecognized needs and aversions, then figuring ways to meet them to get the sale. The Prospect "needs to win", for example, so find a way they can win and you can lose -- while still getting the Sale.

Understanding my son's world is a real challenge. He combines the limited knowledge of an early teen with a limited capability to understand and assimilate new knowledge.

I think, for example, that I erred by describing prison as the outcome of particularly poor choices. In my son's mind, I now realize, prison means no school, association with the police and K9 dogs he loves, comforting concrete instead of disturbing nature, agreeable routines, few challenges, plain meals, lots of television, regular exercise, no frightening choices, no concerns about employment, and congenial like minded peers.

In his mind, prison is not a bad thing, it's a bit heavenly. The worst bit is that in some ways he's quite right. He might actually find a well run low security prison more congenial than the alternatives.

So I need to persuade him that there are better options than prison (even if I'm not entirely sure there are - but that's a different story). Juvenile detention, for example, does include math class. It doesn't provide much police contact, and there are no K9 dogs. Most of all, there are no girls and his companions may not be very friendly.

At the same time I need to come up with a better future alternative for him to work towards - and I need to come up with it very quickly.

Any ideas?

Update: In our community the local police are happy to enter a special needs person into their database with a special "tag" including disability and contact information.

Tuesday, April 06, 2010

A new behavioral intervention: adding calendaring

It's easy to persuade someone who can reason about past and future, and who can connect actions and consequences.

It's much harder to influence someone when reward or consequences must instantly follow action, where the past is forgotten and the future is inconceivable.

So we would like to make the future more real, more tangible. Something that he can interact with. We need to do it in a way that leverages his skills.

How do we do that?

We know that despite a quite low IQ he has a relative talent for devices and computers. They are natural to him, more comfortable and familiar than forest or water or rock. He struggles with many things, but not with software. Plan iMac has been successful. He's done well with his mobile phone, and texting seems to have advanced his writing skills.

So I've added a Google Calendar to his Gmail account - both on our family (free) Google Apps domain. He can view his parent's free/busy time and subscribe to other calendars of interest to him. I've populated his calendar with school events, and "invited" him from our calendars for events of interest. By necessity we have to plan a long way out, so he can see major events coming from many months away. He's awaiting the arrival of a Wii game -- I've put the estimated arrival time on his calendar.

My goal is that he interact with time through the calendar, that he begin to have a sense of future and past. I expect he will add his own events. Calendar items send SMS reminders to his phone (default 30 minute warning).

If he can develop a sense of time, then maybe we can return to teaching about deferred rewards, and then have more ways to change his behavior.

Update 5/26/10: We ran into a calendaring problem. We can't give my son unlimited Google access since his Google Image searches are not necessarily family friendly. We can't, however, using OS X parental controls, block Google Image search without also blocking calendar access. So this plan is on hold for the moment.

Not recommended: special needs spelunking

This actually worked, but I wouldn't try it the same way again.

We took two "spectrum" kids on the regular guided tour of Wind Cave National Park.

One of them was on the verge of bolting for the half the 60 minute tour, then he settled down. The other was tearful, anxious and had his ears covered and eyes largely closed for about 50 minutes, though after 30 minutes he was doing better. By the last 10 minutes he was almost ready to start.

It's very hard to exit one of these tours. You need a guided escort to take the elevator hundreds of feet to the surface. Yes, it was a bit much for our guys. They need a more gradual introduction. We should have started with the small-time gaudy tourist-trap type caves that are easy to enter and exit. Then we could have worked up the to the real thing.

It can be done though. Not saying it should be done ... this way.

Monday, April 05, 2010

A prosthetic conscience for special needs persons

Some special needs teens and adults may wish to do well, but have a great deal of difficulty modeling the impact of their actions. Impulse disorders, limited abilities to abstract, and autism-associated disabilities may all make a prosthetic conscience useful ...
Gordon's Notes: A conscience for robots - and for humans too
... Some humans too would benefit from a prosthetic conscience. It might allow persons with disorders of conscience to function more effectively in the modern world. Our prisons are full of low IQ individuals with a limited capacity to model the impacts of their actions on other persons. A prosthetic conscience might allow them to avoid prison, or to have great success after prison life...

Thursday, February 18, 2010

Adventures in special needs – A Nordic ski resort

At one point in my life if I felt I needed a challenge I’d ride my bike a few thousand miles, or explore a foreign land.

Now I can dwarf those experiences with a simple four day outing to a Nordic ski resort.

I’m still recovering from this challenge. It was successful, but it did push the envelope.
We started a few months ago with one neurotypical child and two on the “autism spectrum” (a somewhat meaningless concept, but we don’t yet have a better classification). One child had done some snowboarding with limited success and had refused any skiing of any sort. Another had done some downhill skiing and decided, after a single face plant, that downhill skiing was insane. A third had very nervously descended a bunny hill.

We ended with all three navigating intermediate cross country ski trails in the wilderness (really) of northern Wisconsin.

The unique challenges here included:
  • Three children, two parents. This stuff isn’t easy even for neurotypical children and it was very rare to have all three in a reasonably good mood at the same time.
  • Weather. These children are used to winter, but an autistic meltdown can take a long time to resolve. Sitting around at 10F for an hour can be a problem, and they don’t necessarily respond to cold in a rational way.
  • Clothing. See weather. Spectrum kids and adults can be resistant to logical dressing.
  • Gear. Actually, this was easy. Cross country skiing fear is much more comfortable than downhill or even snowboarding gear.
  • Unfamiliar environment, atypical stimuli: Northern scrub forest, harsh winds, knowledge that there really are wolves and cougars in the woods (even if they usually stay out of sight) – all troublesome. One child has a very strong need to always know exactly where he is in relation to the home base and to all family members – the first time on a trail was extremely scary. (The second time was easy however – his location memory is exceptional).
  • Different schedules: One child takes hours to come online and peaks in the afternoon. Another rockets at dawn and is done by noon.
The full story of how we made the transition for all three over about two months would take a book to tell. It required genuinely Machiavellian manipulation of sibling relationships and a wide variety of motivators.

There are some quick lessons, however, that one might apply to a variety of similar special needs adventures.
  1. Food: As a result of the climate, exertion, and anxiety the children needed to eat five times a day. If they were short on food they all melted down. We needed to keep them fueled with solid, high fat, high protein meals.
  2. Everyone melted down sometime, including the neurotypical child. Interestingly they rarely melted down all at once, perhaps because there was a strong sense of group solidarity. Each child felt their parents had gone insane and they needed to look out for one another.
  3. Choose a friendly resort in decline with a very good pool. The downsides of the resort people having limited knowledge of what worked and what didn’t was outweighed by the warm water swimming pool. The need to serve to the smoking, drinking, and spending snowmobiling market meant our kids oddities went unnoticed.
  4. Our mobile phones were useless, but we had modern digital “walkie-talkies”. These things are cheap and absolutely amazing. REI has very good ones.
  5. It would have been better to have had a third person along, but it was doable.
  6. You need to be fully on your game. Get lots of sleep. Plan carefully and be ready to abandon every plan. Have contingencies for your contingency plans, and be ready to abandon those. Know when to retreat and when to advance.
  7. Find a local expert and review all the trails in depth. In our case one parent woke early to scout out trails in advance and plan routes – that worked well. Get the best possible maps. Have a compass.
  8. Carry a big pack to hold clothes, jackets, reserve materials, etc.
  9. Be ready to stop a passer by and send them for help. We never had to do this, but you have to be psychologically ready to bail.
  10. Establish a routine very early. Our was: TV and breakfast while Dad scouted routes. Swim. Eat again. Skiing. Eat again. Game room/rest/computer use. Eat. Ski/Other. Eat. Swim. Video.
  11. Bring chocolate on the trail.
  12. Lower the room temperature before dressing. Open a window and discretely turn off the heat. This is a big help.
  13. Overdress. They need to be warm at the start. Clothes can be removed and placed in the backpack.
  14. The kids snow pants were too heavy. We’d have done better with lighter wind pants over the nylon loose stretchy pants our boys favor. Invest in clothing.
There’s much more, but those are the ones I can remember. The most disabled child who we thought least likely to succeed turned out to be a wizard – he skied circles around us wearing only a long sleeve shirt when the wind chill was probably 10F. Everyone succeeded, all our goals were met, and the parents will eventually recover.

Update 2/1/2012: Years later we've done this several times. The biggest issue lately was with our neurotypical daughter, who gets anxious about downhills and loathes falling behind her brothers. Which is to say, we were totally victorious. Until I reread this by accident, I'd forgotten how hard it was to get this initial success.

Behavior motivation: text message controls

One of my charges combines substantial cognitive and psychological disabilities with a profound insensitivity to common motivators.

Yes, this is challenging.

On the one hand, he has substantial limits. In a modern post-industrial society, he is profoundly disabled. In this he has a lot of company – in our emerging world many neurotypical males with an IQ below 120 have unknowingly joining the world of the effectively disabled.

On the other hand, he often performs far below his maximal abilities. Sometimes that’s because his peak performance is very dependent on environmental factors such as medications, time of day, sleep reserves and satiety. Quite often, though, it’s because he doesn’t respond well to any behavioral motivators, including extinction, operant methods/positive reinforcers, negative reinforcers (time out, privilege loss) and peer groups. That’s not to say they don’t work at all – it’s just that there’s a great disconnect between behavioral tool and response. Instead of power steering, you turn the car by dragging a foot.

When he is motivated, his learning and performance increase dramatically – sometimes into the normal range or even beyond. I remember one hockey practice where fast skaters got to stop sooner than slow skaters. He vaulted from the bottom 20% to the top 10% – without seeming to work all that hard. He then returned to his usual easy pace. When he’d misplaced his prized mobile phone the child who can’t remember anything recited a Temple Grandin-style video-recall linear recitation of everything he’d done with the phone – from the morning to the last moment he touched it.

So we’re always looking for new motivational tools to close the motivation gap and bring his behaviors closer to his maximal abilities. Anything he shows a strong interest in is fodder for behavioral motivation.

The most recent motivator comes from a combination of his technology love and the AT&T parental controls on his mobile phone account. He has grown very fond of texting.

One the one hand, we really want to encourage his texting. It is by far his most common form of written expression. He texts a teenage neighbor, who is kind enough to reply. He texts his school mates. He texts me.

On the other hand, anything he likes that much is a lever.

The way we currently use the texting leaver is we pay $15 a month (vastly cheaper than far less effective reading/writing tutoring) for 1,500 messages. This is well below his current use of about 500 texts a month. I then use the AT&T parental controls ($5/month) to set a cap. If he meets various various behavioral goals, such as working on math homework, he never sees the cap. If he’s not motivated, he runs out of text messages.

It’s just one more lever. We have to be careful not to overuse it, but every one we add helps move us forward.

See also:

(Honestly – these are good. On putting this list together I realize I’d forgotten some effective approaches I’ve used in the past.)

Thursday, February 04, 2010

The sad story of the autism vaccination scam

Rahul Parikh, on the occasion of Lancet withdrawing the fraudulent Wakefield Autism/immunization paper, reflects on its legacy.

It's a sad story. Wakefield, who ought to be in prison, prospers. Parents agonize over immunization. Misguided publicity hounds perpetuate fraud. Children suffer from preventable illnesses. Credulous advocacy groups waste time and money chasing a lie.

There's no justice. It will take another decade to get this fraud behind us.

Tuesday, February 02, 2010

Residential occupational training for special needs adults - Eastern New Mexico Special Services

Eastern New Mexico university offers a residential training program for adults with special needs. They are part of the western educational region, so it’s local tuition for neighboring states.

Special Services - Occupational Training Program

The Special Services Department provides services to students with disabilities. We maximize educational and career opportunities, assist disabled students with integration into the university community, and accommodate those students with services needed to allow full participation in all programs. Our certificate program is designed for students who, with appropriate training, are able to obtain positions in competitive employment. We currently have a three semester program, with a second year being developed. This second year will focus on independent living skills and employment.

Entrance Requirements:

A vocational evaluation less than 2 years old. (Either call our office to schedule, or obtain one privately).
Complete documentation and full disclosure of medical/developmental disabilities.
18 years of age or older.
Ability to self-medicate with no assistance.
Independently awaken to alarm/attend classes regularly and on time.
Maintain appropriate hygiene/laundry/dorm room.
Demonstrate effective communication skills and appropriate behavior.
Meet minimum entrance requirements for the selected study discipline.
We have a zero tolerance for any drug/alcohol use and students will adhere to the Standards of Behavior as outlined in the campus handbook.

Certificate of Occupational Training Courses:

Vocational classes and practicum’s/Job seeking skills/resumes
Independent Living I, II, III and labs. Advanced IL for second yr.
Recognizing Conflict/Conflict Management
Physical Education (adapted)
CPR/First Aid
Driver’s Education (optional) with lab
The College Experience

The Special Services Occupational Training Program leads the student to a Certificate of Occupational Training (COT). There are several career programs available (see course catalog). Vocational training emphasizes hands-on instruction, including 12-20 hours per week of on-campus classroom, lab, and off-campus practicum experiences. The technical skills taught in each career field prepares the student for competitive employment in that discipline.

Occupational Training Areas:

Auto Mechanics
Certified Child Care Attendant
Floral Design
Food Services
Certified Nursing Assistant/Home Health
Office Skills
Refrigeration and Air Conditioning Maintenance
Sanitation, Building Maintenance, and Grounds Keeping
Veterinary Assistant

Special Topics:

Animal Healthcare
Stocking and Merchandising
Dorm Life & Independent Living

Students are provided opportunities to build positive social skills and demonstrate appropriate social behaviors by living at Sierra Vista Village. Although supports are in place to assist our students with the social challenges of living on-campus, all students are considered adults and are expected to adhere to university policy and standards of behavior. Our department has staff available between 7:00 a.m. – 10:00 p.m. Monday through Friday to assist students in their transition to dorm life, learning domestic skills, and making good decisions now that they are living independently.

Students and parents must remember: our educational program is geared toward students with disabilities; however, all students are adults, and must be able to live in the dorms and attend all classes and work sites with no assistant. Each student is expected to take responsibility for their educational and personal success or failure, and demonstrate maturity and behaviors appropriate for a college campus.

Although second year students are allowed to live in the apartments on campus; first year students live in the dorms.

Independent Living classes and labs are required courses for the COT program. In addition to labs, students choose a one hour elective from the following as part of the lab requirements:

Sign Language
Support from the Special Services Department:

Academic and tutoring support is provided as needed.

Computer Labs are open for students to use
Limited health concerns are seen by our Certified Family Nurse Practitioner.
Campus Security 24/7
Social Events

Resident activities are held, such as movies, dances, B-B-Q’s, and day trips. We also have Special Olympics and the snow skiing club.

Residence Hall

Our students gain independence as they display responsibility. Staff supervision is active until curfew and, as with any college student; our student’s are expected to adhere to dormitory rules and regulations:

Curfew: 10:00 p.m. M-TR - 12:00 a.m. FR-SAT
Sign in/out log
Weekend check out
Weekly room inspections
No opposite sex visitation in rooms
No private transportation for the first semester

Our career training allows students to learn marketable vocational skills, as well as practical life and independent living skills. We pride ourselves on the (avg.) 75% employment placement of graduates. Graduates leave our campus with verification of training (COT), certifications, valuable life experiences, and positive personal growth.

Verification of Training

COT from Eastern New Mexico – Roswell, an accredited university.
Checklist showing technical skills mastered in the chosen discipline.

The web site has additional materials …

Google suggests an article marketing a vocational assessment program for additional background  …

Marla Wittkopf is the vocational evaluator with the Special Services Department at Eastern New Mexico University-Roswell (ENMU-R) in the state's southeastern area. Marla has been with ENMU-R for seven years and is a tenured faculty member at the institution. The Special Services Department is part of the Developmental Studies Division, and ENMU-R is a branch of ENMU-Portales. This past academic year, Marla tested 115 students, most of whom subsequently enrolled in the Special Services Occupational Training Program.

The mission of Special Services is to provide occupational and social skills training for  students with disabilities who come from across the United States. Although the program can accommodate students without disabilities, the great majority of them have various disabilities. Many have learning disabilities, and throughout their lives they've been constantly told about all the things they can't do.  "It's neat to see their reactions when we help them realize all the things they can do," said Marla.

The program offers students vocational evaluations, counseling, and training within a work setting of their choice in the Roswell community. If program graduates decide to remain in the Roswell area, Special Services staff are often instrumental in aiding them in finding  employment in their chosen occupations.

The Special Services program is unique in the country in that Special Services students live in dormitories on campus, just as students without disabilities do. "They get the real college experience that way, and it also challenges them to learn important new skills," said Marla. "Their days are broken up into two parts, classroom work in the afternoons, and practicum job site training in the mornings. Living away from home in a dorm setting is a big, big change for most of them, and they take classes to help them adjust to living on their own. They take such courses as independent living, conflict resolution, and adaptive physical education."

At graduation, students are awarded certificates of completion that list all of the work skills they have mastered--at least 75% of the job's specified skills. Seventy percent of those who begin the program graduate, and about 75% of the graduates are successfully placed in jobs after they complete the program. "And often the three semester program builds their self-confidence to the point that they want to continue their formal education," said Marla. "It serves as a springboard for students who want and are able to earn their Associate's degree."…

… Many of the students enter the program with specific occupational goals in mind, and it's often the case that their goals are unrealistically low or unrealistically high. "It's not unusual for them to come in saying they want to be physicians or lawyers. Pro3000 and the work samples help them see very clearly where their abilities are compared to the occupational requirements…

… "Many of our students come in having been beaten down all their lives, people always telling them all about what they can't do. Of course they're discouraged," Marla said. "I stress to them that everybody has their own, personal ways of doing things, and we all have areas of strengths. There's no one 'right way' of doing things. We help students discover what they can do. We also provide assistive devices and adaptive procedures  (accommodations) where needed. We view those as the equivalents of the reasonable accommodations employers are required to provide disabled workers under the Americans with Disabilities Act….

Friday, January 29, 2010

Special needs computing - the iPad and the ChromeBook

Interesting developments for providing communications, work, life and cognitive support to persons with cognitive disabilities ...
Gordon's Notes: Computing for the rest of us: The iPad and the ChromeBook

.... Think about your family. If it's big enough, your extended family will have at least one person who's, you know, poor. They may have cognitive or psychiatric disabilities. Or you may have a family member who, like most of American, can't keep a modern OS running without an on call geek. These people are cut off. They can barely afford a mobile phone, and they won't have both a mobile phone and a landline. They will have little or no net access. They may have an MP3 player, but it's dang hard to use one without a computer.

By 2011 the combination of a $400 iPad (and iTouch for less) and $15/month VOIP access will start to replace a number of devices that are costly to own and acquire, while providing basic net services at a rate that other family members can subsidize. Not to mention something pretty, which, speaking as someone who grew up poor, ain't a bad thing...
We'll be able to deliver some interesting cognitive rehabilitiation services on this kind of platform.

Saturday, January 23, 2010

Judo moves on an atypical mind: Plan iMac

If you told me my 13 yo's measured IQ and reading levels 20 years ago I would not have received the news well.

Among other things, I might have assumed someone like him would be institutionalized.

In reality, things are more hopeful, interesting, and challenging. Whatever level he tests at, he seems to extract the information he is interested in from printed materials -- including newspapers. His reading interests are regrettably focal, but I can work with them.

He can barely print and his hand printed spelling is very poor. On the other hand, he's oddly good at old-style dumb-phone texting. There's something about tapping out each character that helps him slow down and process words. So I've given him texting privileges, and, each day, once school is out, I start texting him from my iPhone. I loathe the high cost of texting, but as an educational aid for my son it's extremely cheap. My superficially indulgent mobile phone experiment has been a robust success.

So how did he figure out the phone? How is he able to tweak every obscure setting despite the awkward UI? How did he learn to text? I can't explain this, any more than I can explain his peculiar game skills and non-verbal visual talents. All I can do is look for opportunities to leverage his strengths against his weaknesses. The struggle feels like a cross between dance and judo.

I've just introduced a new move. The early signs are encouraging.

First, some background. For years we've had to sharply restrict his TV access because he became agitated after watching commercial TV (he does much better movies and commercial-free DVDs).

Being TV free has disadvantages. Besides the loss of the electronic baby sitter (I'd use it if I could), I suspect he could learn from selected videos; his visual processing is far stronger than his auditory processing.

For similar reasons we've had to restrict his computer time, even though he has a relative knack for computer interaction. I have been amazed by his ability to bypass my home security measures. Recently he guessed an obscure password; I suspect he intuited it through a mixture of seeing it partly typed and then coming across it in a different setting. How can someone who tests so very badly be consistently breaking my computer security? There's something there I should be able to use.

So now I've made another Judo move. After years of restricting his computer access I've seemingly reversed course and created a "Learning" account on an iMac I've moved into an area we can supervise. This account provides him and his siblings unlimited access to homework resources, educational web sites, his email and twitter, encyclopedia, educational and scientific videos, iTunes U and the like. It does not, however, give him any access to the web sites and game software he loves to use. To get to that material he will have to hack through OpenDNS and OS X Parental Controls. A good challenge.

Today I saw him playing with Scratch, a visual programming language he learned in grade school. Interesting.

I'll report on how Plan iMac turns out.

Saturday, January 02, 2010

Latest sticker chart innovation: discouraging sibling torments

When one sib is verbally annoying another, the victim gets stickers for non response (self-control). This initiative is a component of our recent "politeness initiative".

On the one hand the aggressor does wish to unilaterally reward a sibling with stickers (which are exchanged at a per-column incremenet for hard cash, Amazon credits, and screen time). On the other, the sibling practices self-control.

Works well for an Asperger/explosive mix. For the moment. Of course nothing works indefinitely, so we'll rotate it in and out of the mix over time.