AI and special needs adults: The AI Guardian is in sight

Over the past decade I've written on social media about the concept of an AI Guardian, but I realize I've never put it into a blog post [4]. With the release of the LLM AIs [1] including ChatGP4, ChatGPT plugins,  and recently GPT Agents (GPTs) the AI Guardian is much closer than I'd expected. So it's time to write something.

First, of course, I decided to ask ChatGPT. I've never seen the concept of an AI Guardian online, but evidently I've been looking in the wrong places. As of its April 2023 incarnation ChatGPT4 has quite a bit to say:

You: What do you know about the concept of an "AI Guardian" for special needs adults?

ChatGPT

The concept of an "AI Guardian" for special needs adults, particularly those with low IQ or autism, revolves around using artificial intelligence to provide support and assistance in various aspects of daily life. This concept is still emerging, but it has several potential applications: 

Safety Monitoring: AI can be used to monitor the individual’s environment for safety hazards or emergencies, alerting caregivers or authorities when necessary.

Routine and Schedule Management: AI systems can help in managing daily routines, providing reminders for medication, appointments, and other important activities.

Behavioral Analysis and Support: For individuals with autism, AI can analyze behavior patterns to predict and mitigate potential stressors or overstimulation.

Communication Aids: AI-driven tools can assist in communication, especially for non-verbal individuals or those with speech difficulties, by interpreting signs, gestures, or other forms of non-verbal communication.

Learning and Skill Development: AI can offer personalized learning experiences and skill development activities, tailored to the individual’s needs and learning pace.

Social Interaction Facilitation: AI can help in guiding and facilitating social interactions, which can be challenging for some individuals with special needs.

Health and Wellness Monitoring: Continuous monitoring of physical health, including vital signs, sleep patterns, and physical activity, ensuring prompt response to health issues.

This concept is still in its nascent stages and raises important considerations regarding privacy, ethical use, and the need for human oversight. It's crucial to balance the benefits of AI assistance with the dignity and autonomy of the individuals being assisted. As a physician with experience in health informatics [2], you'd appreciate that while AI can provide valuable tools, it cannot fully replace the nuanced understanding and empathy provided by human caregivers.

Well, that covered the bases. I would love to know what ChatGPT4 has been reading on this topic.

In our family iPhones and narrow focus AIs like Google Maps have been both an essential tool for independence and a screen addiction curse [3]. The ability to locate our children was key to them learning to navigate by bike and bus. Mapping tools compensated for very limited navigation ability. Calendaring helped with anxiety and organization. Notes and Reminders helped with memory and recall limitations. Beyond the obvious advantages of messaging we discovered both our children were better able to process text messages than verbal communication -- especially for difficult topics.

Now there is the near term prospect of far more support going forward. Monitoring email, messaging and apps for the scams and frauds that live on the cognitively disadvantaged. Monitoring financial transactions for worrisome trends and events. Monitoring home environments for worsening or dangerous conditions. Encouraging better diet and activity.  Acting as a job coach. Appropriately paced and reinforced lifelong learning. Guiding our children through the vast complexity of medical care. Even providing a form a companionship in time or facilitating finding company in the physical world. Doing, in other words, what Emily and I do after we are incapacitated or (inevitably) dead.

In the absence of personal immortality for Emily and I the AI Guardian is the best hope for our children's longterm health and happiness. Even as I have profound concerns about the disruption that comes with the rise of the modern AI I also have hope for a better options for the cognitively disadvantaged.

- fn -

[1] Some dislike applying the term "AI" to Large Language Models because they don't appear to be conscious or sentient.  Much of my professional career was loosely related to precursors of modern AI and there is absolutely no doubt that in 1995 we'd have called ChatGPT a bloody scary AI. The goalposts are mobile. LLMs are AIs by any reasonable definition. Insofar as we understand human cognition we do much of the same things that LLMs do.

[2] This "as a physician" bit startled me until I remembered that I'd given ChatGPT4 that information as a persistent context for our sessions.

[3] I tried writing a book on how best to balance these harms but I gave up when I finally accepted that there was absolutely no interest in such a book from the community I was writing for.

[4] A 2015 post on Google Inbox was the closest I could find on the topic of AI assistance. I tagged that nsAI for non-sentient AI.

On autistic meltdown and exhaustion

Via Twitter I’m reminded of two autism blogs that have passed on - Musings of an Aspie (ended Jan 2015) and Everyday Aspie (2017)/Everyday Aspergers (2016). @mxmackpoet called out 3 in particular [1]:

• From the Inside Out: An Autistic Shutdown – Everyday Aspie Feb 2017
• Where I Go When I Shutdown | Musings of an Aspie  Oct 2012
• Autistic Regression and Fluid Adaptation | Musings of an Aspie Dec 2013. This concept of transient autistic regression does not appear in the medical literature. Which speaks volumes about the miserable state of modern clinical research into autism in general, and post-pubertal autism in particular. I suspect the contribution of biology and environment varies by autism pathophysiology and age, but really we need the research.

All 3 match our family's experience from the (sort-of) neurotypical outside.

There is a lot of buried wisdom in these blogs written by people towards the neurotypical end [2] of the autism spectrum. It’s sad that these individuals no longer write on these topics, there really is no replacement for blogs and RSS notification mechanisms. I hope we reinvent them some day [3]. In the meantime I’ll use this post to remind me to explore. I hope one day our #2 will find these essays helpful.

- fn -

[1] It may not be chance that these 3 articles were written in dark times of the northern year. 
[2] It’s not really a linear spectrum of course. It’s some multidimensional space we can’t visualize. People further from the neurotypical space aren’t able to communicate as clearly, these writers are translators.
[3] Or simply recultivate what still exists. Lots of things wax and wane over generations.

When imagination becomes memory

I think this is terribly important, but I’ve never seen it described. So, in a few minutes, I’ll share what I think.

Almost animals have memory, save perhaps the simplest single celled organisms. We think plants have a form of memory as well. There’s nothing uniquely human about memory.

Imagination is less common. It’s not uniquely human either; crows, wolves, cephalopods, cetaceans, primates — they all have some form of something that looks like imagination. We think humans have much more of it though. We can create memories of things that have not happened or did not happen. Imagination is a form of ‘false memory’ that we know to be false.

Except … when we don’t know it to be false. And there lies a problem — but I’ll come back to that.

When did humans develop the ability to create false memories and know them to be false? We think it is older than what we call “human” now — we think our fellow modern hominids, Neandertal, Denisovan and more had well developed imaginations. We suspect we have more of this talent though, and that we might have picked up additional abilities as recently as 50,000 to 75,000 years ago.

That’s very recent evolution, so it’s not surprising that, like strength and height, imagination might vary among people. It might vary in the ability to create “false” memories, and, perhaps independently, in the ability to know them to be false.

The latter variation is key. We know from research over the past forty years that it is relatively easy to create false memories in many people, but we also know that some study subjects, typically healthy university students, are more resistant to false memories than others. If we consider imagination as the generation of false memories that we know to be false, then similarly some people will be better at retaining the knowledge of what happened versus what they imagine happened.

So we know this ability to divide imagination from memory varies. It is plausible, and it fits my own experience, that people with “connectopathies” and other cognitive disabilities may have not only more limited imaginations, but also more difficulty separating the memory of what is imagined from all other memory.

I have seen this in someone close to me. When he was a child I would be upset that he was not telling me the truth, but over time I have come to believe that for him memory and imagination are inextricably blurred. What he imagines, what he wishes to be or have been, is poorly separated from what has been. There is just enough separation, I think, to create anxiety or agitation around the recall of false memory, but not enough to tell what is true memory and what is imagination.

I don’t think this problem is unique to persons with an IQ below the 5th percentile. I suspect it’s true for very many people, and it may explain why so many today are susceptible to novel kinds of media manipulation.

It’s a problem we need to research and understand both for persons with cognitive disabilities and for our society.

Special needs bike commuting -- it's cognitively demanding

This is probably more obvious to most people than it was to me. My judgment is distorted by a lifetime of urban bicycling.

It was very difficult to teach #1 and #2 to ride a bicycle (it would be easier today - we know more). Almost as hard as teaching them to swim. They did well in the end though. #1 competed in high school mountain biking and I think he is a relatively safe urban cyclist. His impulsivity and rigidity are balanced by native caution and seemingly strong visual processing. 

#2 has a substantially higher IQ than #1, but he’s a weaker bicyclist. We did a trial bike ride to school today; he did well with guidance but he was exhausted. I think the relatively simple ride was cognitively draining. #2 is closer to the classic Asperger’s pattern — persistent attention to the external world is very difficult. He may never be able to bicycle commute safely, though he does well mountain biking (and inline skating - remarkable balance there).

In retrospect I’m not sure urban bicycle commuting is cognitively less demanding than urban driving. There’s more time to plan actions, but there’s a lot more judgment involved. By comparison car driving is more rule-bound.

Special needs mountain/gravel biking, or bicycling on separated trails, works for #2. Bicycling on city streets - not so much.

Autism and interest depletion - leveraging routines, calendars and checklists

As #2 enters late High School his interests have narrowed considerably. This means he has fewer options if he bores of the interests he does have, and increasing amounts of his time are spent in passive and compulsive screen activities that seem to produce dysphoria and ennui rather than satisfaction or happiness. It’s a common trend that seems unlikely to lead to a satisfying or independent life.

Fortunately, he’s aware of this and, when he’s not working through what I think of as an “autistic-arrest” (sudden deterioration in perception of self and context, often associated with anguish and psychic distress), he’s interested in working on it. He’s had some success, including introducing new activities like mountain biking, weekly five mile walks and routine calendar review. We’ve created an inventory of his interests categorized by:

1. Enjoys with cravings -- time limited by parents/external actors
2. Enjoys with cravings -- no time limited (bouncing on exercise ball in in this group)
3. Enjoys but no compulsions — tend to get displaced by craving activities, but if initiated they are enjoyable for him
4. Sometimes enjoys, feels good after doing. All exercise except bouncing falls into this category.
5. Things to try — items we (he, us) have selected to try to broaden his interests and provide him with more options.

As per the book excerpt on calendaring, we’re working with him to create recurrent schedules for his Category 3-5 items, staring with book reading. He’s receiving a small stipend for each book completed; he finds it very helpful to have us give him a concrete reward for completion of a new or challenging activity. It’s a curious part of his temperament that we’ve all learned to leverage.

Our thinking about this has been supported by some archived 2007 writings by Joel Smith, an autism activist. (#2 adamantly refuses to read blogs or writings by people with autism, but I follow Joel’s current blog). Joel was using a PalmOS PDA back then, my book project is about smartphone use.

This Way of Life: Living With Executive Dysfunction (Joel Smith)

… Train yourself to follow a routine, with few deviations. The closer you follow a standard routine, the more likely you are to remember it … The more frequently you use a routine, the more likely it is to become a habit…

… solving the executive function difficulties probably won't solve the problem without you first solving the other underlying problems. In addition, your strategies will not motivate you to do a task you don't want to do. These strategies will only help you perform tasks that you want to do…

… Get rid of strategies that don't work. If, after a week you aren't able to establish the strategy, it probably won't ever actually work. If, after a month, you are still doing the strategy, you will probably be able to keep doing it…

… Sggab (amanda at autistics.org) finds that having someone else to watch over her helps her to complete tasks and overcome the problems with starting a task. Some people find that having others call and remind helps get a task done. However, others claim that such reminders only reinforce inertia, so this may be very individual specific…

… Kalen (news at paradox.freeserve.co.uk) says that an externally imposed schedule, such as the kind of schedule a student in formal education must follow, helps her start all her other routines, and also improves her overall functioning…

… I use a Palm Pilot to help organize my time. Even the cheapest Palms, such as the will help some who have executive function difficulties.

The most useful features of the Palm are the to-do lists and calendar. One of the advantages of some of the newer models is the "silent alarm" feature. Reminders can be set to alarm by vibrating instead of beeping, which allows you to get your reminders discreetly and without disturbing others in a class or event.

I also use an enhanced version of the Palm ToDo list, called “ToDo+”...

The entire article, and his reminders and checklist page, are well worth reading for other approaches to routines like eating, dressing, taking medications, paying bills and the like. I’ll be referencing his advice in the smartphone book.

Book chapter excerpt: Smartphone calendaring and special needs

For the book. Comments welcome …

Calendar management is one of the most powerful smartphone tools for independent living. Knowing what to do when takes a lot of memory stress away. The Calendar is where healthy and helpful habits are maintained. It can be very hard for spectrum Explorers to initiate new work, scheduling it on a calendar can be a good launch step. Special Hockey games, doctor’s appointments, work schedules, study schedules, screen break times, family outings, dates, holidays — it all starts with the Calendar.

That was true in the days of the family wall calendar, but the smartphone Calendar is a big improvement. It’s always at hand, appointments have reminders, and, best of all, it’s easy for one or more Guides to manage an Explorer’s Calendar.

Calendars are powerful but relatively easy to use. Every Explorer able to read at a 3^rd grade level will be able to use a smartphone Calendar app. The key is to practice and reward Calendar use. The “Guide’s Toolbox” chapter described a general approach, with the Calendar there are some simple specific techniques. One is to respond to most “when” questions by asking your Explorer to access and review their smartphone Calendar.  Another is to reward routine daily review of the current and next day’s Calendar. Some Explorers may be stressed by the imposed structure of formal Calendar, in this case you will need the usual mixture of patience, reward, pressure, support, persistence, strategic retreat, reframing, empowering and more persistence. Just like everything else that’s new and important.

Of course this assumes that you are also using a Calendar effectively! Actions and examples always mean more than words alone. You’ll want to be comfortable with your own Calendar use before you introduce Calendaring to your Explorer.

….

Apple and Google take similar approaches to Calendaring, but there are some important unique advantages for each one. 

Both Google and Apple have Calendar apps that work well with your smartphone. Both allow a Guide to remotely manage and review the Calendar from a web browser, including adding new items remotely. Both Google and Apple support invitations to Events, Event locations with integrated maps, and calendar overlays. Calendar overlays are pretty useful, they let users see several people’s color-coded events in a single integrated calendar. 

On the smartphone both Google and Apple are building “intelligent agents”, like Siri and Google Now, that use Calendar information to create reminders and suggestions.

Apple’s Calendar solutions have an advantage of simplicity — as long as you stick strictly to “iCloud” and don’t try to subscribe to any “Calendar feeds”. In my experience few people use Calendar Feeds, so as much as I personally love them this may not be a great problem. Apple’s Calendar solutions also work well even when an iPhone doesn’t have data services.

Google’s Calendar solutions are more powerful and far better at working with Calendar Feeds, not least because many schools, businesses and organizations use Google Calendars…

See also: Autism and interest depletion - leveraging routines, calendars and checklists.

Cognitive disability and AI assistance with Google Inbox.app. Suddenly, a new world.

Google announced nsAI (non-sentient artificial intelligence) assisted email today, it will debut in the Android and iOS Inbox.app.

My first thought was that this will be kind of annoying. A few minutes later I was thinking about AI-responses generating AI-responses and the various spam implications. I decided this would be interesting, exciting, maybe a bit scary. There will certainly be unexpected consequences.

Then I remembered how much iOS word and phrase completion has helped #1 son with texting and email. I remembered that I’ve been watching for more nsAI assistance to support both of my sons. 

That’s when I realized how big this announcement really is.

I’ve reinstalled Inbox.app on my iPhone and Ill be planning how to transition both of my sons to the new platform and how to introduce the concepts of nsAI assistance to our local educational system.

This is how the future comes crashing in.

Imagining my son's memory

I want to understand how my son thinks, including how he remembers things. I think I can use that knowledge to help him be the best he can be. If I understood his mind, for example, I might be table to distinguish his memories from inventions and deceptions.

This kind of understanding isn’t easy. Not everyone thinks alike. Some “normal" people seem to think with visual images, other people, like me, do almost no visualization. Understanding the normal mind is hard, but my son’s mind runs on extra-buggy wetware. It’s even harder to model.

One clue comes from self-reports of people like Temple Grandin, an autistic adult and self-described intensely visual thinker. She writes about accessing ‘filmstrips’ to retrieve event data. Alas, my son’s mind, as best he can report, doesn’t work that way. [1]

Whether he visualizes or not I question the reliability of his memory. It’s not only that he has a hard time learning new things, he also seems to genuinely believe many things that are not true. These are generally plausible and self-consistent things that he would wish were true, but we know they are unfounded. I wonder if a fragmented memory architecture means that he is particularly vulnerable to the kinds of invented memories that are relatively easy to create in many adults. Maybe having a visual memory makes one particularly prone to invention of memories by visualization?

My experience with his memory, incidentally, fits with stories of low IQ adults who, under police interrogation, confess to crimes they didn’t commit. It’s easy to imagine him creating new memories out of suggestions.

- fn -

[1] It’s not easy to get him to try cognitive exercises (he suspects I have an ulterior motive, like, for example, changing his behavior), but I’ll try to get him to do the “window exercise” (count number of windows on one’s home, supposedly easiest for visualizers).

Delusional aversion in special needs: maladaptive learning?

As #1 moves to adulthood he shows many cognitive improvements — including better planning abilities. Improvements in some areas inevitably expose disabilities in other areas; we must then choose which to work on and which to wait on.

One of those newly defined disabilities is something we have started to call “delusional aversion”. For example - a sudden, inexplicable and emotionally intense aversion to a mountain biking site. If you didn’t know him better you’d think some terrible and unspeakable secret trauma had occurred there. That does not seem to be the case — though we can’t rule out some minor issue like someone speaking sharply to him, or some brushing grass creating an unpleasant sensation.

Once these aversions develop they are strong and persistent. You could not, for example, pay him enough to put a big bag under his bike seat. He will often produce “explanations” for the aversion, but they are illogical. If pressed he will respond with angry speech. They are classic “fixed beliefs without rational explanation” — delusions in other words. I suspect they are structurally not all that different from the well studied delusions of schizophrenia and they, of course, are very much like phobias.

We think of these delusional aversions as a form of dysfunctional associative learning. He associates something unpleasant with a location (human memories are strongly bound to place), and his disability rapidly amplifies a “single-exposure” learning circuit. I suspect this is a fairly common issue with dogs and other learning animals, but most humans are better able to control these associations. He cannot.

The accumulation of aversions is disabling across a wide range of activities of daily life. So this is a problem we’d like to address.

Naming and framing a cognitive disability is a first step to mitigating it — but we don’t yet know the next step. Presumably we can borrow from techniques used to treat phobias, particularly desensitization and association-subsitution. That’s hard and slow work though, and he’s very difficult to motivate. He does not see these accumulating aversions as a problem, and it’s hard to treat a problem a person doesn’t have.

We may try a bit more of a cognitive tack. This is definitely a reach — introspective cognition is very hard for him. It is not, however, impossible. If he can begin to label his aversions as non-rational learning…

(Incidentally, as one approaches guardianship age these are things to note down for the benefit of court hearings.)

"Explosive Child" Greenes has web site for "Disruptive Mood Dysregulation Disorder" kids and caregivers

#1 and I went snowboarding today. Which doesn't sound like much except that for him snowboarding has been more aspirational than real, and I'm a 50+ Dad.

I knew he needed me doing it with him, and what we both needed was bunny hill time. Not lessons, we did some of those years ago -- a borderline fail then. We needed sliding time in decent conditions.

Which we got. There were some anxieties of his I had to work around, some on the fly strategy invention, and of course I had to learn to snowboard (yay quick iPhone wikihow consultation) -- but we succeeded. Good runs on the greens for both of us. We stopped when he wanted to quit -- at a successful moment.

On the way home I thought of how far he's come since ages 3-7. Those were tough years, they left their marks on our faces. When I started this blog we were just emerging from the worst of it. By then we were experts in applying the lessons of Greene's "The Explosive Child", which I wrote about in 2007. 

It occurred to me that I ought to send Greene a thank you note. That led me to a relatively new site and organization of his, called Lives in the Balance. Nice to see the team working there. 

You can Tell Your Story | Lives in the Balance. I figured that would be one way to say thanks...

For our cognitively impaired multi-label son, ages 3 to 7 were hard. Very hard. I'm glad I don't remember them all that well; I do remember contemplating splitting the family so I could care for him away from his sibs.

We studied the Explosive Child intensively. It wasn't the only thing I studied -- operant conditioning with extinction of negative behaviors and rewards for positive behaviors was essential too.

Things started to get better around ages 7-9. We had more challenges, especially as he got older and stronger, but somehow his judgment developed just a bit ahead of his physical strength. The biting went away, the hitting went away...

He learned to read - at least to around 6th grade level. He learned many other things too -- hockey, swimming, snowboarding, biking, mountain biking, baseball, wrestling (ugh), xc skiing... Many more.

He's almost 17 now. Who knows what lies ahead. Things could go south at any time, but that's true for any of us.

He's come a long way.

The Explosive Child was the most important book we ever read ...

PS. Visiting the site I learned the "Explosive Child" has a new DSM-5 label: Disruptive Mood Dysregulation Disorder - replaces the misused 'bipolar disorder' for kids like #1. There's a comic outlining the evolution of the label, which is as good and as bad as any of 'em .... "PIA", Conduct Disorder, Oppositional Defiant Disorder, Intermittent Explosive Disorder, Pediatric Bipolar Disorder, Disruptive Mood Dysregulation Disorder.

Special needs and population health management

Buried in a discussion of improving care of patients who spend a lot of time in emergency rooms, and who cost health care systems a lot of money, is a very interesting phrase

Practicing Award-Winning Population Health | McKesson Better Health

... HCMC decided to open the Coordinated Care Center after its internal studies showed that 3 percent of its patients were responsible for about half of its total costs. To ensure a focus on those high-cost patients, the care center has admitted only patients who had been hospitalized at least three times in the previous 12 months.

... HCMC realized that drug use, homelessness, mental health issues and cognitive impairments are “the kinds of things that fuel super-use,” he says, so it structured the Coordinated Care Center around multidisciplinary teams that include not only doctors but nurse care coordinators, social workers, behavioral health workers and drug abuse counselors who “work together on the underlying problems.”...

Drug use and homelessness are always included in discussions of health care costs, but I do not recall ever seeing mention of cognitive impairment, and of programs specifically targeting cognitively impaired adults who are seen in emergency rooms.

I'll be tracking this.

My son learns algebra on his iPhone via DragonBox

Friggin awesome.

That's what I got from the look on #1's face when he solved an equation with x on one side, and a numeric expression on the other. He was doing algebra, he knew it, he was proud.

Damn, that was the best $6 I've ever spent.

#1 is entering 10th grade next year in the special needs modification program. He reads at about a 4th grade level (perhaps less) and struggles with basic arithmetic and time calculations. Despite years of practice he can't do long division by hand. Despite this reality, he declined the standard transition programs for a regular junior high academic schedule -- though we worked him down from three languages to one.

Algebra is one of the items on his junior high dream list. That seemed reasonable to me. We weren't getting anywhere with our old arithmetic drills - he was bored and frustrated. Further progress will require years of slow practice on real world problems, and use of his iPhone calculator. Seemed a good time to try something different. So, for his summer homework, we decided to try DragonBox, a French-Norwegian iOS/Android/Windows/OS  X math "game" we'd used with my daughter on an appnetizen's advice (Thanks Jonathon!).

He's been doing it for summer homework several days a week. Sometimes he'll randomly flail at it until the problem is solved, but watching him I could see something else developing. Something that perhaps played to his near-savant visual processing strengths. With DragonBox he was learning negation, reduction, balanced operations, add zero, divide one - basic algebra. A little bit of progress every day - on his iPhone, as a game.

Today he got to the level where the graphical icons were replaced by numbers and variables. When he solved the numeric expression he blushed with pride and joy.

That's worth $6 I'd say.

Now we'll work with transferring these skills to paper. I will do paper operations in parallel with his app operations, then see if he'll replicate on paper what he does in DragonBox (step-by-step), and so on. Maybe it will work, maybe it won't, but in our family we believe in declaring victory early and often (and so life is an unending series of wins, until we die).

I've bought the high school version of the app for #2 and #3 - and I'm following the We Want to Know team's blog.

See also:

• Adaptation versus Modification: Critical code words in understanding K12 special education. (plus Settings)
• Status June 2013
• The end of High School, the end of dreams: transition hardness
• Apple's iPad/iPhone App store has a special education section: It's still there
• Math fact drills for an Asperger's child - two excellent solutions: worked well to a point.
• Be the Best You can Be: Judo moves on an atypical mind: Plan iMac: 1/2010. This one worked ok, but he mostly uses the Learning account when he can't have phone time.
• Different minds, Different paths: 10/2009. I'd forgotten how well he did with the game "rush hour".
• Adolescent special needs: Sometimes Judo works 3/2013

Anthropology of the alien mind

As a neurotypical [1] parent of an atypical mind I often feel like a human anthropologist visiting an alien world. Sometimes I imagine I can understand #1's thinking, and sometimes I know I can't.

I know he has an IQ less than half of what I once had [2], but often he has insights I miss. He solves the world in a different way; usually a much inferior way, but sometimes his methods are better.

He can't explain them though; he can't translate his inner states and reasonings to verbal form, or even to an internal model of himself [3]. He can't tell me why he suddenly won't go to hockey practice because he doesn't know himself.

Perhaps he saw something disturbing on the long and twisty road to the distant arena. Maybe it's a joint practice, and there's someone on another team he wants to avoid. Maybe he's feeling anxious, and he wants to know that his father will enforce the rules and consequences he relies on. Rules he is, as yet, unable to internalize.

When the rules are applied, not for missing a practice, but for breaking a promise [4], he is not angry or sad. He is cheerful. He seems relieved. His guard rails are intact.

I am training for First Contact.

[1] More or less: What if we could see the diversity of minds?
[2] As I age we may yet converge!
[3] Arguably neither can "we", cognitive research has shown many of the mental-state stories we tell ourselves are false. They are often post-hoc explanations with little relationship to how we think.
[4] Hockey is important for many reasons, but most of all as a safe lab in which to learn the rules of adult life and of employment. 

Mainstream special education - #1 did a ton of work in last year's world history class.

When I clean out the kid's notebooks I take photographs of selected writings and diagrams. I can't keep all their work, but I can keep the pictures. Today it was time to recycle my son's 9th grade world history notes. That's the course for which I wrote an adaptive textbook in world history, similar to the "human geography" text I'm writing now.

He did a ton of work. I hadn't remembered how much he did, but wow, he worked hard. (We worked hard!). He did that work despite a teacher who, like one of his current teachers, struggled with grading special needs students. If he'd felt encouraged, he would have done even more.

I struggle with this kid a lot. Sometimes things get hard -- and I have to find ways for the two of us to just have fun together [1]. In the midst of this struggle I can miss how much he does.

Yeah, I doubt he retained all that much about China's dynasties, but I think some of it's rattling around in his head. More importantly, he developed some more reading and organizational skills. He reads at a 3rd grade level -- but mainstream 3rd graders don't do the work he did.

Today, in the geography homework I made for him, he evaluated flight paths from Minneapolis to Beijing on a world map and a globe and then compared the results to the NWA web site. I swear I saw a light go off. Later I found our globe near his bedroom.

Mainstreaming is very hard, but it's not a bad thing.

[1] A round of 9 hole golf can go a long way (his sport, not mine). I can't be improving him all the time.

Google's Project Glass - it's for special needs too

Google is marketing lightweight "Glass"(es) that include a constant computer connection and enable recording and transmission of surroundings.

Google is frantically marketing this to young, healthy people. This mystifies everyone.

There is, however, a market ...

Gordon's Notes: Google's Project Glass - it's not for the young: 

... We don't mind having something identifying people for us,  recording where we've been and what we've done, selling us things we don't need, and warning us of suspicious strangers and oncoming traffic. We are either going to die or get demented, and the way medicine is going the latter is more likely. We need a bionic brain; an ever present AI keeping us roughly on track and advertising cut-rate colonoscopy...

Anything that helps cognitive function in the elderly can also improve the life of special needs adults. Google Glass may be important for our community.

Motivation and creativity: Adolescent special needs and crime

Number one proudly showed mother a bag of candies. The facility went to DEFCON 2 - on Mother's day morning. This was his way of confessing to a hot crime.

These are the mornings where we are reminded that, even in difficult economic times, society has ample housing for special needs adults. 

Not that he's doing all that badly. In mid-adolescence his behavior is much improved on years past, and quite a bit better than when he was three to five years old. Alas, the room for error is also much less; a 15 yo doesn't get the latitude of a 5 yo. It probably helps to register with the local police [1], but overall the stakes are higher. Of course.

So, DEFCON 2 it was. Fortunately, we're professionals. Mother calmly asked how he'd come across the candy on a Sunday morning bike ride. He had a ready answer. A construction crew friend gave it to him. Of course this would violate the no-accepting-gift rule, but it is true that he's gotten gear from the construction guys he "supervises" during the work season. Candy on Mother's Day Sunday though? Even he knew that wouldn't fly.

There were two places he could have picked 'em up from, and I hit the managers at both. One didn't carry the candy sample, but the other had jackpot. The good news is he'd paid for 'em, and the clerk remembered how much he pulled out. Stealing from my wallet is more of a learning opportunity than a crisis. Heck, a friend of mine did much worse as a kid and he's a judge now.

Still, there were bad things to rule out. Stealing from my wallet was a problem, but getting paid off by an adult would be far worse. We needed to know where the money came from. Fortunately we were set for the real third degree. The best way to corner a perp, after all, is start with the answers. 

Good cop, bad cop again. The method that works best is calm silence and some leading questions - "We know you know we know". Repeat back what he confesses, guiding him along. Take breaks when he stalls; let him spin out the alibis until they crack. Let him choose who to talk with.

That's where it got interesting. His second alibi was quite creative. It built on a friend's story and through in a bunch of persuasive detail. It only had two big fractures. One was that he got a trophy so big it wouldn't fit in our car -- so he left it at home. He forgot to claim that he'd won a cash prize, thus suggesting he'd stolen cash from the till. Lastly the event took place a week ago -- and there's no way he could hold onto cash that long.

Still, it was the best creative story he's ever told. I didn't know he had it in him. Even as the interrogation proceeded I took mental notes; now I could raise the bar for his creative school work.

Eventually he confessed. He put the remaining funds back in my desk drawer -- easier than handing it over to me. I said owed me $4, so we mowed the neighbors lawn and I called that even. The hardest thing for him was the idea that despite paying me back he didn't get to keep the candy. So I came up with a way for him to earn another $1.50 from his piggy bank and some work and we retrieved one candy box from the garbage.

A good days work overall. I'd already ordered a cash box, but I don't want to remove temptation entirely. Instead I'm going to put my wallet in the cash box, but leave $5 in my drawer. When the money goes, I'll know we have a learning opportunity. If he passes on $5, I'll move it to $10. 

Training.

[1] In our community the police like to know which teens are special needs. This won't make any difference under emergent circumstances, but if they're called for shoplifting or they pick a kid up it can.

Autism redefined - DSM 5 and the services dilemma

I've claimed frequently over the past six years that the diagnostic term "autism" is virtually meaningless. That doesn't mean this is entirely a good idea ...

New Definition of Autism May Exclude Many, Study Suggests - Benedict Carey - NYTimes.com

Proposed changes in the definition of autism would sharply reduce the skyrocketing rate at which the disorder is diagnosed and might make it harder for many people who would no longer meet the criteria to get health, educational and social services, a new analysis suggests...

... The definition is now being reassessed by an expert panel appointed by the American Psychiatric Association, which is completing work on the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders, the first major revision in 17 years. The D.S.M., as the manual is known, is the standard reference for mental disorders, driving research, treatment and insurance decisions. Most experts expect that the new manual will narrow the criteria for autism; the question is how sharply...

... Under the current criteria, a person can qualify for the diagnosis by exhibiting 6 or more of 12 behaviors; under the proposed definition, the person would have to exhibit 3 deficits in social interaction and communication and at least 2 repetitive behaviors, a much narrower menu...

Obviously, I agree with the DSM authors that the current definition of "autism" is not particularly useful. On the other hand, it's tied by law and legislation to a wide range of services and protections. So we need to be very careful about we replace it with. This is particularly important during our current era of slow economic growth, capture of that feeble growth by the most wealth Americans, and a rapidly aging population. There are ever more legitimate and powerful competitors for special needs funds; reclassification will be embraced as a big money saving opportunity.

To be sure, the fundamental problem is that "autism" gets special treatment over other brain disorders (ex: schizophrenia). There's no logical reason why this should be true, or why children in some school districts with "learning disabilities" get support while children with low IQ don't. That's why nobody has "mental retardation" any more; why assign a meaningless diagnosis when another equally meaningless diagnosis provides better services? For us doctors, that's a "no brainer".

We need to fix that problem, but it's not going to disappear. So any reclassification better have big returns. A new classification has to have a big impact on research, treatment, prognostic accuracy or management. This refactoring of the DSM classification doesn't promise much of anything -- except cost savings.

If there isn't a big impact, then we might as well flip the problem around, and redefine "autism" as "cognitive disability, cause unknown". That way we keep the legal protections and services associated with the word "autism", we expand those services to cover everyone who needs them, and we start with an intellectually honest classification that promises nothing and delivers nothing.

Then we start afresh - and begin to classify brain dysfunction based on pathophysiology and objective assessments.

See also:

• Very annoying: the diagnostic criteria for  are not all that useful 11/2005
• Autism turns into Asperger's - how did that happen? 5/2008
• Redefining mental retardation and autism - the revolution ahead 3/2006
• Psychiatric diagnoses: 200 years behind 11/2006
• Autism no more -- the end of a diagnosis 12/2006
• Autism: the label given to a wide and diverse variety of neurodevelopmental disorders 5/2007
• The end of autism 12/2009
• Rethinking neuropsychiatric diagnoses 9/2010
• Victory: The war against 20th century psychiatric diagnoses is all but won 12/2010
• The twilight of "schizophrenia" 4/2011

Nature November 2011: Special issue on Autism, Mottron's view of the employed autistic and Calgary's Ability Hub

The Nov 2011 issue of Nature (v479, n7371, pp5-144) focuses on "The Autism Engima". It includes 3 reviews/news articles and 1 research article:

• Special issue on neuroscience: The autism enigma - introductory editorial
• The prevalence puzzle: Autism counts - a thorough 'news' review of the prevalence of autism. I came away with the impression that novel environmental changes might account for 0-20% of the increased diagnostic prevalence of autism, but that most of it is better diagnosis and reclassification. Studies of adults suggest that autism was far more common than most imagined -- these children were invisible.
• Scientists and autism: When geeks meet - autistic traits may be advantageous in some careers, but the hypothesis that assortative mating accounts for autism clusters doesn't sound too solid.
• Changing perceptions: The power of autism - this one is a research article, and is behind a closed-science paywall. Science Daily has a summary: Autistic people superior in multiple areas: Scientists must stop emphasizing autistics' shortcomings, expert urges.

I followed up on the Mottron article and came across an excellent National Post article ...

Autism’s advantages: Researcher says autistics need opportunities more than treatment | News | National Post

Because autism — characterized by repetitive behaviours, restricted interests and preoccupations and difficulties in basic social and communicative behaviours such as eye contact, intonation and facial expressions — is a lifelong disorder, parents can be caregivers for life. But as the population ages and parents get sick and die, there’s an even greater need to integrate people with autism into society by giving them the skills they need to become independent adults, experts say. Children tend to be the focus, autism organizations admit. Adults are overlooked.

“After 18 years of age they’re not kids anymore and they’re forgotten,” Dr. Mottron said over the phone this week from Lyon, France. “People have a cliché, that if he’s autistic you can do nothing with him. That’s not true. The fact that you have some terrible autistic life is not representative of autism in general.”

In his commentary, Dr. Mottron cites recent data, including an epidemiological study from Korea published this June that found the disorder is three and a half times more prevalent than common statistics suggest. “Among these 3.5%, about two-thirds have no adaptive problem at all,” he said, meaning they function relatively normally in society and should be able to take on a job.

... Ms. Dawson said it’s unfair to categorize someone as low functioning or high functioning. She and Dr. Mottron believe many tests that are used to determine level of functionality are inappropriate. Less commonly used tests such as Raven’s Matrices, which doesn’t require verbal instruction to complete, can actually reveal very high intelligence levels.

“To estimate the true rate, scientists should use only those tests that require no verbal explanation,” Dr. Mottron wrote in his paper. “If we were to measure the intelligence of a person with a hearing impairment, we wouldn’t hesitate to eliminate the components of the test that can’t be explained using sign language; why shouldn’t we do the same for autistics?”

Ms. Dawson said an entire session at this year’s International Meeting for Autism Research in San Diego focused entirely on finding out how to measure the intelligence of non-speaking autistics, who might be considered low-functioning....

... The founder of Specialisterne, a Danish company that has helped more than 170 autistics find work since 2004, said it’s OK to start such a movement with people who would be considered higher functioning.

“If we will be able to run a business on the skills of medium- or low-functioning, I’m not sure,” Thorkil Sonne said from Copenhagen. “But everyone deserves a chance to feel that they can produce something that others appreciate.”

... the Sinneave Family Foundation’s Ability Hub, a 17,000 square foot centre on the University of Calgary campus dedicated to helping people with autism gain life skills and work training...

... The Ability Hub opened in October and is just one of a few new centres devoted to getting autistic adults ready for the real world, said its executive director, Dr. Margaret Clarke, who has spent a career working with people who have autism — the Ability Centre is under construction in Whitby, Ont., and the Pacific Family Autism Centre to be built in Vancouver.

“Around the world we know that average lifetime cost to society to an individual with autism … is $3.4-million per individual. Three-quarters of those costs are incurred in adulthood largely around services to enable and facilitate individual vocations,” Dr. Clarke said, adding that some data suggests every dollar you invest in pre-vocational programming for people gives you a $7 return. “I actually think that number is going to be even better in the area of autism because individuals with autism have a great capability to learn, they’re just often held back by specific skill deficits or not given a chance.”

Information wants to be licensed?

We're always on the lookout for new therapeutic interventions, particularly behavioral interventions for our guys.

Since we're physicians, we're used to finding those interventions in handbooks, manuals and the like. Knowledge that comes with a creation history, but that is public.

Of course even in medicine that's not quite true. I've always been struck by how little ophthalmology, for example, is actually written down. Yes, there are lot of ophthalmology textbooks, but they seem to leave out a lot of the actual practice of eye care. Orthopedics was the same way. General medicine had the best public coverage.

In the 1980s medical-process patents began to appear in clinical practice [1], though, surprisingly, Congress actually moved to limit their impact in 1996. In Nursing care several "instruments" are owned by publishing companies and cannot be used without license.

There are similar issues in science, particularly in genomic research. The "iceman" (Otzi) genome is still a carefully held sequence, worth fame and grants to its owners. Archeologists are infamous for restricting access to ancient documents (ex: Dead Sea Scrolls).

So in the worlds of science, engineering and medicine there's a spectrum of open knowledge.

We're discovering that much of behavioral therapy for autism tends towards the closed end of this spectrum; many programs are patented and unpublished.

I'm unsure how important this is. It may be that patented programs are not only "secret" but also unstudied. Idiosyncratic therapeutic interventions may be harmful or wasteful (in this world, since time is limited, wasteful is harmful). Perhaps we're better off not knowing what's in them.

On the other hand, secret knowledge is yet one more obstacle to information sharing in the cognitive disability community. It's a part of a bigger problem that's getting more of my attention...

[1] Link intentionally made to a NEJM restricted access article.

High School: don't assume staff actually communicate

#1 is now in High School. He seems to like it and we're proud of what he is doing. On the other hand, the school is short resources.

That's not a surprise. The lesser depression has been persistent. We were a bit surprised to learn, however, that at least one of his mainstream teachers didn't know much about his disabilities -- or even that he had an IEP.

We shouldn't have been surprised though. We're physicians, and we know docs have trouble communicating about patient care. I used to tell my patients to always copy notes and results and hand carry them between caregivers. It was by far the safest way to pass information.

So we've drafted a summary of #1 and sent it to all his teachers. Now they know a bit of his story, what his disabilities are, what he likes, what works best, etc. Seems to be helpful.

That leaves his aide(s). (Supposed to be plural, but it looks like he's got about 1/3 of an aide in 1 class.) Schools, for reasons I can guess at, make it very hard for parents to communicate with aides. Everything is supposed to go through the (overloaded) teacher.

There's a fix though. My son carries a "planner". We've started using that to pass messages to his aides through him. They write notes in the planner -- such as the assignments #1 invariably "forgets". (One advantage of a defective memory subsystem is that "forgetting" is an awfully convenient excuse.) Old paper and ink technology goes where email can't.

Update: Things get better.