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.

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.)

 

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:

• iWonder Surf for $15: includes whitelist abilities
• Safe Eyes Mobile for $20: they also make desktop apps

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.

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.

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 ...