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.

Explosions and anxiety: Adult special needs life is a tough haul

My 26yo son, "#1", is pretty solidly in the 3-4th (bottom) percentile of cognitive abilities. It's a cognitive continuum of course; what's true of the 3rd percentile can also be true of the 10th or the 20th -- especially when lack of sleep or alcohol is involved. So this isn't just about special needs adults. It's something useful to understand for tens of millions of Americans.

The other day he exploded. No harm came of it, except to him. It's a behavior we've known from childhood though it's only with time we came to understand how closely tied it is to his anxiety.

It happened during an ice hockey game. We play together at local pickup games. He's a good mid-level adult hockey player, a step above me and our usual pickup skaters, but he's not a fitness guy. He gets tired towards the end of a game and, unlike a neurotypical player, he doesn't push himself. He just takes it easy. (This logical but socially wrong behavior isn't unique to #1.) This can irritate teammates who expect him to perform well.

In this case a teammate made a mildly inappropriate (for this kind of hockey) criticism of #1s lackadaisical play. Once upon a time I'd have made a similar comment, but I've learned it doesn't work. What works is to praise the things he does well. (This simple principle took me forever to learn and apply.)

I get those kinds of comments myself from better players sometime -- but I enjoy them.  It means I can guilt my critic into being a reluctant game-long coach. (Sadly this only works once, they don't really want to coach.) Or, if it's late in the game, I'll laugh and say "yeah, I suck". 

That's advanced stuff. In this case #1 was tired. He exploded with a red faced rant and various scary seeming threats. I was nearby though, so I sat between him and his critic and explained to the poor guy that my son was a special needs adult and that I'd sort things out. #1 hates to hear himself described that way (you would too) but the moment passed for everyone but my son. For him these things endure.

I've learned not to criticize these behaviors -- for him it's all about extinction-reinforcement. I was able to walk him through how I'd have handled the comment. It wasn't over though. He's been kind of wreck since. He's complaining of a variety of physical symptoms consistent with somatization (or some horrible disease that we'll feel very bad about -- my wife and I are both physicians). It's hard to understand his internal reasoning but his behavior is consistent with shame, guilt, and a deep fear of exploding again. His usual response to an episode like this is to replay it for years and avoid the setting. I don't know if he'll continue to do the pickup hockey. For now we're managing what we think is somatization (and not, say, some post-COVID neuropathy or lymphoma [1] or whatever) and working on resetting him.

Not a good day, but also not avoidable. But it could have gone much worse. It does go much worse. A lot of men with limited cognitive or emotional control can melt down like this. If police are involved and aren't at the top of their game it can escalate very badly. Even if police aren't involved it can turn into a physical fight with all of the problems that come from that. Most special needs adults, and most men, don't have a 60+ neurotypical father to sit between them and the guy they are excessively angry with.

It's a hard world out there. If you're one of the lucky guys with good emotional control and understanding it might help to know how this goes. If you're a cop -- I hope you're getting the autism/special needs training now being introduced into high performing police forces.

- fn -

[1] That's physician humor. Any symptom can always be early lymphoma.

See also:

• The Explosive Child and other books (2007)

Progress in adulting

 Progress in adulting

1. When asked to do something he doesn't want to do #1 rants for shorter and shorter periods of time and often then just does it. (Assuming he sees the point of it.) Or he comes up with a reasonable compromise.
2. #2 has a line on a reasonable government job that he can do well and that is well suited to him. (Government jobs have lots of accommodations and support for neuroatypical.)
3. #1 hasn't gotten a handle on his diet (he's classic 'metabolic syndrome') but he understands the need and sometimes he tries. He cheerfully does his 300 calorie a day bike trainer routine. Every day.
4. #1 has done a good job as a volunteer/aide for special hockey. (He can't really play because his shot is far too hard for our goalies and he never figured out how to shoot any other way.)
5. #1 has managed, so far, to avoid conflict with an adult coworker who bullies and torments him.
6. #2 has passed his community college courses so far and may be willing to do more technical coursework (that's likely to be a good fit for the gov job).
7. #2 has been doing a solid CrossFit derivative workout once weekly. He's willing to exercise 3 times a week and his strength and endurance are consistently improving.

Exercise for autism - the home mini-CrossFit program

A few weeks ago I posted about a mandated 300 calorie a day weight stabilization program for #1. I also mentioned there's a different program for #2. There's no mandate for his program -- it's something he and I put together. He dislikes exercise but feels it his duty to do it.

The program has 3 events each week that we do together:

- Depending on season either a 1h singletrack mountain bike ride or a 1h MN Special Hockey event.

- A few miles of walking or (depending on season) 2h family road bike ride or 1h outdoor ice skating loop*.

- Home mini-CrossFit

The home mini-CrossFit is a highly scaled version of a standard CrossFit workout -- perhaps 1/3 of the intensity and effort. We have a COVID home gym so we have a good range of options.  He does it with my wife and I; having Mom participate was key to building his confidence.

After some experimentation we've settled on a standard pattern. First the "WOD" (workout of the day) then the strength portion. The strength portion is standard power lifting, no Olympic lifts. We have a good set of dumbbells and a full rack and bar.

The WOD follows a standard pattern. It has four different movements that vary widely (movements are chose to also be a warm up for the strength portion since he won't do a separate warmup). The duration is always 16 minutes and each movement is done within 1 minute (so each of the 4 movements has 4 reps) or 2 minutes (each of 4 movements has 2 reps). Movement number is set so he has roughly equal time spent working and resting.

We've been doing this particular pattern for a few months and he's dramatically fitter and stronger. I don't think he realizes how much he's improved. Things that were hard for him a few months ago he now does while reading his phone. I have been gradually increasing the frequency and weight as he starts to finish in 15 seconds rather than 30 seconds. Sometime in the next year his bench press will pass mine.

I think most of the improvement is from the mini-CrossFit, though the singletrack ride would tire many adults and its certainly helpful. His exercise days are my rest days, but the effect is still impressive. It helps to be young.

* Years ago our entire family inline skated at the Metrodome every week or two all winter long. It was great and we'd do it again ... except that structure was torn down for an essentially useless Vikings football stadium.

Thanksgiving 2019 - update

Continuing in the vein of "how does the story end" (Jan 2019) #1 and #2 continue to mature and achieve. It would have been a great comfort 17 years ago to see #1 vault the 36" box jump at our family CrossFit Box. I didn't think he could jump that high. Wrong.

I guess I gave away the story there. After about a year of working with a personal trainer who is also a CrossFit coach #1 joined my box. He has done better than my fondest hope. Not least because coaches have hit just the right tone ... friendly, supportive, but also treating him much like every other adult. Same for our athletes. The power of expectations is hard to overstate.

And ... special hockey volunteer, plays adult rec hockey with me, works with and rides horses, special  olympics snowboarding, power lifting, golf, summer bicycling, works two part-time jobs ...

#2 had his best grade ever on a college exam. His studying is better. Started working in a minimum wage job filling popcorn bags but tells me he doesn't mind the boring work, likes using his hands, likes the money. Managed a challenging problem while working with a supportive teacher that would have melted him a year ago. Taken on a mentoring and support role with his special hockey colleagues. Continues his Tae Kwon Do training.

Both gentlemen are a pleasure to be with.

A (very) inclusive CrossFit gym - in Reno Nevada

Fitness is a problem for many people, not least special needs teens and adults. Diabetes and obesity are common in our population.

Diet is a factor — it takes a lot of cognitive work to outrun the American junk food industry. The special needs population is vulnerable to deceptive advertising implying health benefits of "sports drinks".

Exercise is also a problem. Special Olympics and Special Hockey programs are low volume — typically once a week. Group classes may be intimidating or unwelcoming. Incomes are low and gyms can be costly [1]. Workout music may be intolerable. The feel and odor of sweat may be unusually bothersome. Lastly, suffering for health is a bit abstract for many with special needs.

Today I learned of an extraordinary example of doing something more ...

Upstate Nevada - CrossFit Everyday Heroes

… Upstate Nevada is the first nonprofit facility for community fitness and is motivated by the philosophy that “nobody should be denied a healthy lifestyle due to physical, cognitive or financial impairments.” ...

… The Upstate Nevada board and staff run a community first, gym second … Inclusive and adaptive programs for any type of physical or mental impairments...

… Our Everyday Heroes program offers free or reduced price memberships for the following ...

-Adults with physical or cognitive impairments and their families

-Children with physical or cognitive impairments and their families

Wow. Very impressive. I’ve seen something a bit like this at CrossFit Icehouse in Fargo ND, but Upstate Nevada is at another level. I hope they share their learnings with the broader health and special needs community. 

- fn -

[1] OTOH, adults on disability support often have to spend down to avoid asset caps — exercise classes and personal trainers can be a healthy option.

How did the story end?

I started writing this particular blog in September of 2004. At that time Explorer #1 was 7 and #2 was 5. They are adults now.

The early years before this blog are a blur now. I think by the time I started writing we had developed a reasonably effective approach and seen some progress. The years between 2000 and 2004 were harder.

We aged a lot in those years.

Now this blog is infrequently updated. That’s partly because of my related book project, partly because adult Explorer challenges are personal, and partly because the complex educational and financial (SSD, etc) challenges we deal with now are managed by my wife — and she doesn’t blog. We’re specialized that way.

So the story continues, but the blogging is less frequent. For the few that have followed this blog I feel like I should provide a summary of sorts. For those who are starting on a similar journey it might help to know one ending, then maybe go back through past posts and pick out things of value.

In general our Explorers have done well. They are both adults, for now both have guardianship status. We have, to date, for the moment, avoided the catastrophes parents of special needs children justly fear.

#1 has cognitive disabilities. Once he was an “explosive child”. Now he reads and even writes a bit, albeit largely on his phone. He has two part time jobs (no benefits) and he has longterm disability status and thus some potential security after our deaths. He’s been a reliable employee. His self-regulation and planning ability continue to improve. He loves his family. His diet could be better; it’s a typical non-college US diet (i.e. terrible). He needs more exercise. He remains a pretty good athlete for someone who rarely practices. 

#2 is on the classic autism “spectrum". He is in a post-secondary transition program and is a B/C student at our local community college (he’s fine with a C). Sadly he has shown zero interest in learning coding —  the one path I think could lead to his financial independence. He is usually delightful but struggles with novelty, travel, and changes in routine. He has screen time issues but works them. His self-regulation continues to improve. His work capacity is limited, but growing. His diet and exercise are better than the US average. He is kind, sweet, compassionate, and a typical middle sibling peacemaker. His great strength is persistence. He has a bad day, but the next day he tries again.

Were I to have read this in 2002 I think I’d have felt relief. The story doesn’t end until the narrator dies; it could all change at any time. But for now, well enough.

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.

Catch 22: Special needs students in transition programs can't take community college classes in Minnesota

We’ve discovered  an interesting “Catch-22. It applies to Minnesota but may be common elsewhere.

In MN a student entering a state funded transition program cannot do courses at a community college — even if they pay for them directly and even if they were doing them while in High School through Minnesota’s PSEO program.

The reason is that Community Colleges require a High School diploma, but transition programs require that a student not have a High School diploma [1]. While in High School students may attend Community Colleges for advanced courses through programs like PSEO (MN), but not after finishing High School. Once a student is in a transition program they may likewise, through the transition program, be eligible to attend selected community college classes.

This catch-22 won’t snag many students. Most students entering transition won’t have been doing PSEO classes or be interested in most community college courses. It may, however, catch autism-spectrum adults with relatively strong academic skills. Our #2 falls into this category.

We’re sorting out our options, but wish we’d known this in advance.

- fn -

[1] In practice though either adaptation or modification a MN student with an IEP (includes “special needs”) will typically have the credits to graduate. To maintain eligibility for transition program education for ages 18-21 the student may attend graduation, but the diploma is not placed in their hands. So, they finish High School at age 18, but they don’t actually graduate. This bizarre ritual must have its roots in the slow evolution of law and regulation. It might, for example, be rooted in an era where students “failed grades”; perhaps states chose 21 as a maximum age that anyone could spend in public high school regardless of grade. When post-secondary transition programs were created perhaps they were subsumed into this framework. I’m only speculating, but it would be consistent with how structures of law and regulation evolve.

Adventures of the autistic family - the Duluth Traverse mountain biking trail.

So we did this. We’ve come a long way in 7 years. It’s not like there weren’t issues, but, really, it is kind of amazing.

Autism - updating my thinking

This blog is about two very different people with atypical minds connected by family. One is now an adult, the other is almost there. I call them #1 and #2.

#1 wants to be independent. He does less with me now, and more on his own. That’s a sad thing for me, but I’m hardly the first father to miss time with an adult son. #2, at the moment, wants Dad time even as he takes on new things that test his limits. Things like joining a neurotypical high school mountain biking team [1].

Seeing him in that setting I have more insight into how his world looks. When he’s stressed I see him move into a mode where the world fades away to only two people — #2 and Dad.

It’s a kind of extreme focus, a tunnel vision. Even the environment fades away. In cold rain, on a muddy dirt road, surrounded by a team I’m responsible for, I need to stop and give him full attention for an extended discussion of my inadequacies. I see him enter ‘full aspie’ mode, then respond to a threat of decreased screen time by resuming motion, followed by the  beginning of a stereotypical dialog. The dialog begins with me accepting responsibility for my faults, then I provide a structured apology, then he performs an analysis of what went wrong, followed shortly by an often perceptive self-analysis, then a return to the world.

Over time the cycle seems to go more quickly. The progress is encouraging, even though the journey is longer than he yet realizes.

#1 carries the autism label. He meets criteria and it helps with services. Autistic is not a great description of him though. He’s more complex. Greene’s “Explosive child”, (see my 2007 reading list) might have the best description of #1.

For #2 autism is a helpful label, and books on “autism” feel relevant. Including one I first read in 2013; and recently reread (emphases mine) …

Autism, Inside and Out - Download The Universe (review and exposition by Steve Silberman of the NeuroTribes blog)

… Harmon … published “Autistic and Seeking a Place in an Adult World," an account of the search for employment by a young artist named Jason Canha. While dozens of news stories a week speculate about candidate genes, environmental factors, and other possible causes for the condition, Harmon zeroed in on the practical issue that all families face when their kid “ages out” of services: How are they supposed to support themselves and learn to live independently?…

… The controversy over the term mindblindness -- and its relationship to compassion and empathy -- is one of the most yawning abysses in autism discourse, and too deep to do justice to here. Suffice it to say that Baron-Cohen made things worse by muddying the distinction between an inability to parse social cues in real time — which seems to be the cognitive issue unifying all points on the spectrum — and empathy, which is more like a capacity to care about how another person is feeling...

… Anyone who has spent time with autistic people can tell you that they're intensely concerned with how other people are feeling, to the point of being overwhelmed. But they often can't piece those feelings together from the usual clues of facial expression, tone of voice, and body language. At the same time, however, autistics are often adept at reading each other’s emotional states from signs that would be opaque to their typical peers…

The thing missing from this short essay, a thing I see in #2, is how dynamic his autism state is. At peak performance he has low-normal perception of his surroundings including some social cues, under stress that falls away. There’s great variability. The essay does capture #2’s empathy and compassion for other people.

- fn -

[1] The mountain biking community has quite a few people on the spectrum. In retrospect that makes sense. There’s a rhythmic swing/bouncing motion to trail riding, especially on flow trails. There’s a social aspect of doing things together, but mostly one is riding the bike and managing the terrain. Conversation is limited and one can always talk about the bike. For #2 most exercise is excruciatingly boring, but mountain biking demands focus and attention. It’s a good spectrum sport.

Exercising with autism: working within the energy budget

A post about energy levels and autism activity reminded me how #2 has managed his mountain biking team participation.

He is one of the more consistent attendees of practices, but he doesn’t do a full practice. He started out doing about half a practice. Over time that’s edged up to perhaps 2/3 of a practice. He goes at a pace that feels very slow to a near 60yo father/coach — but he goes.

His consistency is remarkable. It’s the same with inline skating. He shows up. He goes at his own pace. He does it.

He is almost always limited by his “emotional energy”, not his lungs and muscles. He loves to talk to me while he does things; if we talk on a topic he’s excited about he doesn’t get tired. If the activity is not exciting, or the conversation or audio isn’t engaging, he tires quickly. I think he does better with inline skating and mountain biking because they if one doesn’t focus they can be painful. During our winter walks he listens to the podcasts he loves, then talks about them with me.

It turns out that one can improve fitness even if one’s heart rate doesn’t peak and sweat is minimal. He is going further and faster, though never with great effort.

I’m impressed.

Special needs urban bicycling - what streets are safe?

A few weeks ago I wrote about trying residential-urban (Saint Paul, MN) bicycle commute with #2. I realized he wasn’t ready, so we’re focusing on his mountain biking. He rides with a team I manage. It’s hard work for him, but he keeps persisting. I now do a scaled practice with him — about 50-70% of our novice rider practice routine. I got the scaling idea from my own CrossFit hobby — where I’m about 50% of the male athlete standard.

At that time I wrote that #1 was doing relatively well with his bike commuting. He has quite different cognitive traits; the two boys have complementary strengths. 

Then, on a family outing, #1 took off on a 4 lane (2 each way) 50mph+ roadway. I’m pretty sure he knew I would not approve, but he wasn’t just yanking my chain. He was also showing off how fast he is, specifically much faster than his father. (I already knew that!). I didn’t say anything at the time, but his bike was grounded when we got home.

It took a while to figure out a good approach to letting him ride streets again. I started out investigating local traffic skills classes; I thought I’d adopt that curriculum for him, maybe do a hands-on course together. I decided it was the wrong fit though. Many of the skills he already did well, some of the curriculum wasn’t relevant to real world commuting, and many of the topics were too abstract.

I realized we had two issues that were relatively unique to #1. One is long term hard. He has had words with people in bicycle trails/paths [1] and, as is typical when he experiences conflict, he now avoids all bicycle paths.[2]

The other is a simpler problem. He can’t easily classify roads into relatively safe vs. relatively dangerous. This isn’t obvious — try making up the rules! It took me a while to come up with a set of ‘safe riding places’. The current list with some familiar examples is:

It has a bike lane - like Fairview or Summit
It has a bike path - but you have to use the path (Shepherd bike path)
It is a "bike avenue" with bike pictures - like Jefferson
Speed limit is 35mph or less (NOT 45, 50, 55) AND has one lane (on each side if two way)

We’ve been over the list several times; he sometimes forgets the magic speed limit. It has helped to go over how few people survive being hit at 40mph (basically nobody, not that 35mph is so great). I put these rules, together with a checklist of essential ride items [3], into a note on his iPhone (using a browser interface to his iCloud account, as described in my Smartphones for All book).

Being as he is, it doesn’t work to get a simple agreement on these things. I keep his road bike locked, before I unlock it, he has to show he’s carrying the necessary gear, then he has to review the safe ride place rules (using is iPhone if needed). Only then do I unlock and wish him well.

He’s starting to transition to a routine. That’s a good sign; once he has a routine it tends to stick. 

Wish us luck.

- fn -

[1] I suspect this is mostly his fault, but addressing that is part of a long hard slog
[2] It is annoying to have pedestrians in the dedicated bike trails instead of the neighboring walking trail, but well tempered adults know to live and let live. #1 perseverates about these conflicts, I think they replay visually like a tape loop he can’t purge.
[3] He has quirks about carrying things. Nothing can be attached to his bike. He can’t explain why he dislikes taking his ID card or something with my number on it. His iPhone has his medical info, emergency contact and the like. I’m going to get that information written on back of his “must-carry” State ID. His iPhone shares his location using Apple Find Friends so we can track his long rides.
[4] As a teen and even as an middle-aged adult I’ve ridden more dangerous roads than the one he got grounded for. One of the unfair features of a monitored special needs adult is that you don’t get to do the stupid things your father did.

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.

Hockey as a guide to behavioral interventions

#1 and I made our first trip to the yearly USA Hockey Disabled Hockey Festival, special hockey division.

Watching two of his hockey issues I realized they mapped well onto behavioral issues.

He’s a strong player, but very weak at passing. He also over-responds to aggression or even accidents, rapidly escalating. (Sometimes, to his credit, the emotional response is so strong he removes himself from play. Which isn’t a great response, but not the worst. Fortunately this is special hockey, a more forgiving place.)

I think both of these match onto more global issues.

Passing is cognitively hard and, unless one has skilled teammates, often unrewarding. Instead of scoring a goal, the puck goes to the opposing team. The only reason a strong player passes to a weaker player is because of social pressure and social rewards. Turn-taking type behavior in other words. #1 is weak at this kind of interaction; he doesn’t “feel” the social pressure.

Handling escalation is also tricky. #1’s sister can set him off with a look. (If she’s in a bad mood this works well to spread the feeling.) He is unable to respond with an equal or lesser action; in part because he mis-remembers the initial provocation. In his memory it is far bigger than it was; though in hockey the aggression is often flagrant*.

Both of these issues will factor into our summer behavioral program goals. Special hockey will give us a concrete way to manage progress. If he passes the puck, and returns an elbow with no more than an elbow, then we’ll have made real progress.

* Parenthetically, we have a bit of a referee problem in special hockey. If they come from regular hockey they overlook the routine illegal roughness that is hard for even neurotypical players to handle (fights!) and is well beyond what special hockey players can manage. Conversely, if they are used to less competitive special hockey they are unprepared to see elbows thrown and sticks slashed. It’s a hard job.

Employment - an unexpected direction for #1

Our #1 has always straddled the borderline between (legal) disability and non-college employment. Much as he has been on the borderline between participating in conventional sports (rec hockey, adult hockey) and assisted sports (special hockey). 

That trend continues. During a work rotation through the first year of his ‘transition program’ he was offered part-time (50%) conventional employment doing warehouse work. Not enough to live on, but perhaps a problem for qualifying for disability, supplemental needs trusts, 529 ABLE plans, housing support, medicaid and more.

He is, of course, quite excited. We have, of course, mixed feelings. We haven’t focused on managed savings, budget training, debit cards and the like. That seemed years away, and likely to involve only trace amounts of money. What happens now to his transition program? Do we now get him his (deferred during transition program as is the peculiar norm) high school diploma? Do we divert his income into “room and board” that we can in turn invest in an S&P index fund for him?

What about transportation? He hasn’t completed transit training and it’s a difficult 1 hr bus ride to his job site. We are fortunate he is a strong cyclist, the weather is decent, and there’s a safe 30 minute route to work.

I suspect he will tire of employment once the novelty wears off. That has been a common pattern with other activities on the far side of disability. He is older though, and we see signs of more executive function. Flexible we remain…

Dating and relationships on the spectrum: AUSM presentation and reading list

#2 and I attended the first of a planned series of Autism Society of Minnesota (AUSM) presentations: Dating and Relationships: How Does This Work?

It was awesome.

There were two parallel tracks. A track for spectrum teens 12-19 was led by Jeannie Uhlenkamp, author of  The Guide to Dating for Teenagers with Asperger Syndrome. A session for professionals and parents was led by Sara Pahl and Dawn Brasch. The teen track would have been challenging given the variety of interests and learning features. My track is best summarized as “so we’re not the only ones”; between #1 and #2 I could have spoken to every topic. (And suggested a bunch of additional topics for a future “advanced” track.)

The frank discussion of the legal aspects of spectrum sexuality and choices was particularly appreciated.

This needs to be turned into a video series for wider use. I understand the AUSM has plans in that direction.

For now, here is a reading list from today’s session:

• The Guide to Dating for Teenagers With Asperger Syndrome: Jeannie Uhlenkamp: 9781934575536 (by the speaker). Despite the title this also works for #1, who is on spectrum but not Asperger.
• Dating For Dummies: Joy Browne: 9780470892053: Amazon.com: Books. Not written for spectrum teens, but recommended by speakers.
• Socially Curious and Curiously Social: A Social Thinking Guidebook for Bright Teens and Young Adults: Michelle Garcia Winner, Pamela Crooke: 9780884272021 (illustrated)
• Decoding Dating: A Guide to the Unwritten Social Rules of Dating for Men with Asperger Syndrome (Autism Spectrum Disorder): John Miller: 9781849057806
• The Autism Playbook for Teens: Imagination-Based Mindfulness Activities to Calm Yourself, Build Independence, and Connect with Others (The Instant Help Solutions Series): Irene McHenry PhD, Carol Moog PhD, Susan Kaiser Greenland JD: 9781626250093
• The Aspie Teen's Survival Guide: Candid Advice for Teens, Tweens, and Parents, from a Young Man with Asperger's Syndrome: J. D. Kraus: 9781935274162

Smartphone for all: "Parental" controls and managing messaging abuse

It’s hard to get good information on managing smartphone use for a vulnerable person — aka “parental controls”. Especially for Smartphones.

Vendors sites often promise more than they can deliver and provide little information on how they work. Vendors are also understandably reluctant to discuss side-effects and problems. The tech resources I trust tend to dislike the whole idea of parental controls (writers are too young!), and Google search results are dominated by vendor sites, spam blogs, and under-resourced newspaper columns. Parents and “Guides” (supporters of vulnerable users, aka “Explorers”) are truly at sea.

Ok, so “At sea” is a bit polite. Screwed is probably more accurate. The next time your TV tells you that that it’s “easy to monitor your child’s smartphone use” you have my permission to put a brick through the screen.

It’s hard to get reliable information, but I need to cover this topic in my smartphone for all book. So in this post I’m going to share my current impressions — I’d love to get comments here or elsewhere. My impressions are certain to change as a I learn more. For insight on Android solutions I need to credit a review by Brian Hall [1]; just ignore anything he says about iOS and iPhones. For example, he is impressed by the ability of third party Android apps to track location or limit app installation — but those capabilities have long been part of every iPhone. I don’t blame Brian, it’s hard to know both Android and iOS [2] and content farm writing is hard work.

My impressions:

• Brian’s article focuses on filtering and restricting rather than monitoring. For a vulnerable adult I think monitoring is just as important — but it’s harder to do.
• iOS (iPhone) has far better built-in restriction options than Android, but it needs better texting/messaging controls and it needs time limits [3]. If you want to restrict or eliminate Text Messaging on a stock iPhone you need to both disable iMessage [4] and have a mobile carrier that allows restriction or monitoring of SMS texting (typically for a non-trivial monthly fee).  A parent or Guide may consider something like Facebook Messenger (https://www.messenger.com/) [5]. Messenger’s web client makes it easier to monitor than SMS or iMessage — assuming one has control of an Explorer’s credentials. It can be used separately from Facebook.
• It’s easier to extend Android than iOS, so Android plus a separate app and service has some advantages over iOS. This may be particularly true for texting controls. I don’t know how these impact device reliability or usability, I read that some of them are difficult to install. From Hall’s review I’d say Norton Family Premier is the only solution worth looking at, but it has weak texting/messaging controls
• This party solutions for iOS leverage the tools Apple built for corporate iPhones. These tools are limited but they are well tested. The main strength is web filtering and monitoring, but that’s less useful in the Facebook age when, for many “Explorers”, browsers can be disabled with little impact. (Disabling the browser is easy to do on iOS, but requires a third party product on Android.)
• Social networks (Facebook, Snapchat, Instagram, etc) can only be monitored by using a user’s credentials; that is, by assuming their identity. This probably violates the Terms of Service of these businesses and it’s too complex for many Guides or Parents to take on. I do discuss it in my book though.

My primary surprise is how hard it is to support safe use of old school SMS/Messaging. It seems to have never occurred to Apple that this would be a good option to provide, and, of course, Android defers all of those concerns to third party developers.

 

- fn -

[1] Published on a content-farm site with a name suspiciously reminiscent of Tom’s Hardware, a famous geek resource. Such is the state of the 2016 web. Once BYTE would have done a fabulous review, but it died long ago. I think we pay a price for that kind of absence.

[2] So have sympathy for me!

[3] Time limits are usually more important for children than for independent adults with cognitive disabilities. Lack of texting/messaging controls are annoying though.

[4] Log out of iMessage in Settings, then lock accounts in restrictions.

[5] Yes, Facebook, famed invader of privacy and exploiter of customers is now the “safer” option. For now!

Smartphone for all: the Guide is impersonating the Explorer. There's a problem there...

It’s only in writing or teaching something that we come to understand it. I’ve been guiding my two special needs Explorer’s using their iPhones for at least five years, but I only today realizes why the Guide role works — and why it might get harder.

I’ve put the key concepts into a book chapter (Smartphones for all) about Guide tools:

A Guide could implement many of the recommendations of this book by working on an Explorer’s smartphone every evening. You could take it in your hand and review emails, enter Calendar items, update Contacts, review Facebook Group membership and so on.

You could do that, but it wouldn’t be practical even if your Explorer lived with you. If your Explorer is an adult with their own residence it’s even less practical.

The Guide’s role is possible because of two features of today’s digital world. One is that information on a smartphone is commonly synchronized (actively duplicated) with a secure online store. The other is that it’s possible for a Guide to assume an Explorer’s identity if they know the Explorer’s digital credentials, typically their “user name” and password. These two features weren’t designed to make the Guide role possible; nobody at Google or Apple has been thinking about Guides and Explorers.

It’s easiest to understand this using an example like a Calendar. A capitol-C Calendar is how this book identifies a calendar viewed and managed by an application like the iPhone’s Calendar app (Calendar.app). A Explorer views today’s Events (appointments, scheduled things they need to do) on their iPhone, but the same Events are stored online. A Guide, using the Explorer’s credentials, can manage the Explorer’s Calendar Events using a web browser. Whatever changes the Guide makes will, typically within a few minutes, appear on the Explorer’s iPhone.

The ability to assume an Explorer’s identity is a tricky issue. Many children use their elderly parent’s credentials to their online banking, and bank staff know this very well, but it’s also explicitly forbidden. Google and Apple usually know a smartphone’s location and more or less know where a computer is located — having the same digital person in two places will trigger email warnings. For at least the next few years this will be manageable, but we Guides need to all encourage Apple and Google to support proxy users, either by better  ways to share things like Contacts and Calendars, or by formally supporting someone like a Guide. The good news is that aging parents are going to drive changes that will also support younger Explorers.

I’m pretty sure neither Google nor Apple have thought much about the needs of a special needs smartphone user, though Apple in particular has done quite a bit of work to support persons with motor, visual and auditory disabilities (“accessibility”). So they probably haven’t considered why hacking into someone’s email might be a feature, not a bug. I expect it will get harder for one “person” to be in two places at the same time; we might in time see more than warning emails.

There are several reasons for optimism though. When we leave our computer at home logged into our online accounts, and work with the same data on our smartphones, our digital self is in two places at once. A second reason is that the education market has similar needs for a supervising person to work with a student’s account data.

Most importantly however my generation are going to create large numbers of customers who are being supported by their children.

Current trends are encouraging. Banks are adding authorized surrogates and Google and Apple will likely do the same. Google already has the concept of an “Inactive Account Manager” to provide authorized access to a second user in the event of death, disability or disappearance. Apple has the concept of the iCloud “Family” for sharing media and locations. Both Apple and Google support some sharing of things like Calendars.

We have multiple market needs and the outlines of several solutions. So I think the ethical impersonation that allows me to be a Guide is going to go legit. Maybe this blog post will help a bit, and I’ll try to get something like this into a bigger forum. I’m hoping the book will help a bit too. Know anybody at Apple or Google who wants a copy?

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.