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.

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.

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.

Tips for managing one Asperger's athlete

Both #1 and #2 are physically active. This is very much by design and lifelong persistence. #1 often enjoys team sports and personal bicycling, but these activities are also agitating, disturbing, and anxiety provoking. He’s very sensitive to criticism, very insensitive to advice and feedback, and by nature macho and blunt. That is a hard combination, but #2 is harder.  I think #2 may be more typical of the active Asperger’s athlete.

#2 does not like exercise. He does it because it helps him psychologically as well as physically and because he wants to please me. I encourage it because it’s critical to his mental health. He is poorly connected to body signals — so I have to remind him to drink water, to eat, and adjust clothing to temperature. He dislikes this advice and when he’s stressed he reacts badly — but he is learning to use “I don’t want water” as a signal that he’s moving into a difficult mood zone. He does best on a full stomach in cool or cold weather and poorly in hot conditions.

#2 dislikes some activities less than others. Special hockey works for historical reasons and because his brother does it. It helps that the ice is cool. Currently he least dislikes mountain biking, cross country skiing and inline skating. He has liked climbing in the past but climbing gyms are a poor location for a meltdown (which still happen). He does all these things at what I consider a novice pace; far slower than he could manage if a bear were after him. Only hockey triggers bursts of impressive speed. His pacing doesn’t change even when he becomes skillful; he handles inline skating terrain with aplomb, but always slowly.

Unsurprisingly I’m almost always his one-on-one coach. There can be other coaches around though; such as on the High School Mountain Biking team he rides with. I sometimes think about what tips I might give those that are interested in helping people on the spectrum. In order of decreasing confidence I came up with…

1. Ask parents/guardians what works and what to avoid.
2. He won’t remember your name or that of any other riders. He won’t recognize your or anyone else if you see him on the street. He won’t remember you without cues. If you see him in a social setting say “Hi, I’m X. I am one of your coaches. It is good to see you. See you at practice. ” That’s about right.
3. His limits are psychic, not physical. He very rarely approaches any kind of physical limit, long before that he feels emotionally exhausted. At the very best he can do about half of what a novice can do.
4. He thinks social interaction and manners are a very good thing. He also finds them exhausting. This frustrates him as he wishes he could do them. He likes a short greeting, but dislikes any questions. He is temperamentally unable to engage in typical social conversation; for him insincerity is a crime. (He’s very sympathetic to people in distress if he recognizes the distress. He loves counseling people by letting them vent.)
5. Give intermittent low key positive feedback. Understated, brief, positive. “Nice climb ___” is good. Minimize enthusiasm.
6. Avoid any criticism of the form “you’re doing x, you should do y”. He has a wildly exaggerated response to well intended criticism; he plunges into despair.
7. Give feedback in the form of “It’s ___ I’m going to ___”. For example: “It’s hot - I’m taking off my jacket.”, “I’m thirsty, I’m going to drink water.”, “I’m going to go fast down this bit so I can quickly climb the other side."
8. He can be unexpectedly talkative. Polite responses are good. You don’t need to contribute much, just occasional topic related verbal prompts.

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.

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.

My book to be: The special needs smartphone for independent living

I’m working on a book with a working title of Special Needs Smartphone. I don’t think that will be my final title, but it’s a good description. It’s a book I’m well placed to write; I have years of experience with two very different special needs smartphone users, I’m a geek, I’m used to writing, and I have the opportunity to do it. I’m not expecting to make money, but I do hope to make a positive difference. The book will cover both iOS and Android (that’s not easy, by the way :-).

I’m writing this book for parents and other supporters of teens and adults with a range of different minds. This includes teens and adults with IQs of 60-70 and limited reading skills, but it also includes normal IQ autism spectrum teens managing disabling preoccupations or aversions to some independent living skills. Some on the spectrum, for example, might find calendaring painful, have an aversion to lists and schedules, or be unfortunately prone to getting lost.

The goal of this work is to support independent living and mitigate harm that can come to a vulnerable population living with a tool of amazing, sometimes frightening, power and versatility.

I’m considering publishing options and a kickstarter campaign, but my default assumption is that I’ll self-publish through Amazon print-on-demand and self-fund. For the community I’m trying to reach I think a printed book is essential, eBook is secondary.

At some point in the next few weeks I’ll launch a domain and blog/tweet under my “true name” to promote the book and support readers. Until then I’ll have some posts here; I like blogging as a way to think about what I’m working on and some of these posts should be useful in themselves. You can get a feel for what’s coming by reviewing the Best You Can Be blog posts I’ve written on this topic over several years (Technology tag). One caveat — the book tone will be lighter and brighter than my usual somewhat dour style (I blame my Scots ancestry).

If you have ideas, advice, want to recommend a publisher or just want email notification of publication, please email me at jgordon@kateva.org or leave a comment below.

I’ll let you know how it goes.

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.

Techniques for negotiation with people on the autism spectrum

Negotiation is a big part of parenting any child, but the toolkit varies.

We’ve used “Three Steps to Yes” (persuasion for geeks), Kazdin’s extinction/reinforcement, Greenes Explosive Child (above all) and more for working with #1. It’s made him a skilled negotiator, which isn’t a bad skill to have. For #3, so far, standard parenting tools suffice.

#2 is different — he’s classic Asperger [1]. He needs a different set of negotiating techniques — such as the set outlined in a recent NYT essay on Hostage Hoiidays. Another addition to the toolkit - I particularly liked the obviously-fake-but-genuinely-effortful apology, the focus on vocal inflection, the techniques of partitioning/minimizing and “Track II” / 3rd party interventions.

Special needs parenting is very educational.

[1] We have no useful terms for taking about these complex neurological disorders, but he resembles the original stories. Remarkably he was classically autistic as a young child, once upon a time we weren’t supposed to revise that early label. Lots of nonsense in our dying classifications…

See also

• Understanding an unusual mind 5/2010
• Persuasion, adolescence, and the joys of prison life 4/2010
• Reading about autism and ADHD - our personal favorites 11/2007 (Explosive Child)
• Training exotic animals, husbands and difficult children 6/2006
• Gordon’s Notes: Negotiation 2014: A compilation of state of the art techniques 11/2014

You never know ...

One of our family's big achievements in our early years with special needs and autism was teaching both boys, #2 with classic autism (now "Aspergers") and #1 with more complex disabilities, to swim.

This took years of persistence and patience, fueled by Emily's hatred of preventable drowning. Try and fail. Try and fail. Pool one and two. Teacher five and six. Again and again. Money spent and lost - more than many could afford. Private and group. Family practice.

After years of this they could swim enough. After that it was improvement. #1, if he were motivated, could be competitive in butterfly -- a stroke I can't do. (I'm a strong swimmer.)

#2 just passed his "pre-lifeguard" course.

You never know.

Autistic "swingers" should consider inline skating

I touched on inline skating in a previous post about exercise for the autistic teen, but after a recent skate with #2 I think it deserves a post of its own. To explain why, I’m going to start with a novel way to divide up the “autism” world.

There are lots of ways to name and classify variant minds, and most of them are headed for the trash heap. In that context I think we’re free to name our own. So today I’m going to divide the world of non-adaptive [1] variant minds into swingers and unswingers.

Swingers are the autism-spectrum teens and adults who love to swing. They are the teens who tear apart the Rainbow play sets built for children [2]. Unswingers may share the legally useful diagnosis of “autism”, but they have no interest in rhythmic motion.

Swinger and unswinger autism isn’t a typical diagnostic divide, but I suspect it’s a useful division — with implications for health and behavior. We have kids on both sides of that divide — one swinger and one unswinger.

Which brings me back to inline skating. #1, the unswinger, has no interesting in inline skating outdoors. He can’t explain his feelings verbally, but my guess is he considers it dangerous and uninteresting.

On the other hand #2 is a swinger, and inline skating is one of the few outdoor activities he clearly enjoys. Cross-country (nordic) skiing is another one. In both cases, but especially with inline skating, there’s a rhythmic motion of core muscles and a sensation of falling and rising, floating and flying. In other words, a swinging sensation.

#2 has the typical motor coordination problems of Asperger’s syndrome, but he’s a strong swinger — and an increasingly strong inline skater. His technique is still weak, but over many years it’s slowly getting better. More significantly, he’s comfortable over urban streets and sidewalks — terrain that defeats many stronger inline skaters [3]. He’s generally not tolerant of scrapes and falls, but he shrugs them off when skating [4].

I don’t know of any other summer activity that has the rhythmic rise and fall of the swing. So for swinger-positive teens, and with recognition that anything out of the basement is risky, I recommend a look at inline skating. With, it should not need to be mentioned, wrist guards and a very good helmet that should be replaced every 3-5 years and with ANY head impact. [5]

[1] Non-adaptive, meaning not competitive in our current environment, an environment that requires a high degree of emotional control, cognitive flexibility, and social interaction. In this environment it’s not only “autistic” minds that are disadvantaged.

[2] I’m working on reinforcing the existing structure so it will withstand #2’s adult wait and swinging style.

[3] It’s a bit surprising how many club skaters, who can be very fast on smooth trails, do poorly on urban landscapes. 

[4] There’s a reason that inline skating is not as popular as it was when boomers were younger. It’s a contact sport. I’m a strong inline skater, and every few years I find a way to fall.

[5] I wear a helmet when bicycling, but I recognize there are valid arguments that for some people, in some conditions, the benefit of a bicycle helmet is less than I would have thought. With inline skating I am as certain as death and taxes that a helmet is beneficial and wrist guards are very helpful. With any non-trivial impact the helmet needs to be replaced — like air bags helmets are single use devices. They should also be discarded after 3-5 years even when pristine — they compressive material degrades with time and sunlight.

Autistic exercise: options for the distracted teen

#1 and #2 are both on the spectrum. They have some things in common - rigidity, solipsism, love for family — but they’re pretty different people. This is particularly true when it comes to exercise, the balm for all things from mood to brain development to physical health.

#1 is a jock. Hockey, baseball, bicycling, mountain bicycling …. adaptive sports or mainstream sports — he likes motion and he’s pretty skilled. #2 is different, he likes screens, books and Lego. #2 is also dangerously distractible; while #1 is quite good on a road bike #2 terrifies me and passing drivers alike. Neither boy likes hot weather and bugs. The good news is that #2 generally willing to exercise with me, and I love to exercise.

So now I have to come up with an exercise program for #2 that’s safe, effective and enjoyable. I’ll start with a short list of activities that I think of as suited to screen-oriented teens with high functioning autism …

• Minnesota Special Hockey: Be great if we had more ice time, but this works well during the season.
• Running: If you know many runners you can tell quite a few are on the spectrum.  Indoor treadmill with a screen can work.
• Climbing (indoors): Outdoor climbing is dangerous for the distractible, but indoor is fairly safe. Great exercise and, again, appeals to many on the spectrum.
• Swimming: a bit boring, and teaching #2 to swim took great patience and some money, but safe and works all year round
• Inline skating: again, there are quite a few on the spectrum. A rhythmic swinging type of activity.
• Weight training: solitary, methodical, quiet, can listen to music or podcasts…
• Exercise bike/ elliptical / treadmill: Especially if paired with a screen. (You get unlimited screen as long as you stay above 5 miles an hour…)
• Trampoline: Risky, but bouncing is good
• Mountain biking: #2 on the road is scary, but he’s great on even reasonably technical trails
• Martial arts: We tried this years ago and it failed, but he’s older now. A possibility, though group interaction is challenging.
• XC Skiing: he is an excellent XC skier — but the season is sadly short. (This year was pretty good though.)

I think we can work with this. We live in Minnesota so we need a range of indoor and outdoor activities to cover the entire year.

Some other sources of ideas:

• How to motivate teens/adults with autism to exercise - Laura Shumaker
• Physical Fitness | Family Services/Health and Wellness | Autism Speaks Extensive set of links at end

Special needs update Sept 2013: High School again

Quick notes that might be of interest to caregivers ...

• #2 son ("aspergers", college-bound, grade 9) has started high school at a local teache-run project-based granola-heavy charter school program. This will be an interesting experiment. Our primary concern will be college requirements and getting passable scores on college entry exams. 
• #1 son (various, not college, grade 11) did quite well over the summer learning Algebra via DragonBox. He's excited about his Algebra 1 text; he does better at algebra than he did with arithmetic. It's a relief to have him finally "allowed" to use a calculator and forget trying to do long division. He's also (finally) doing "shop" (mechanical skills are deeply unfashionable in American high schools) and is very keen on that as well -- and he's learning useful skills.
• We've made fantastic progress in social acceptance and support of the neuro-atypical over the past forty years, but we're still in early days with "gender relationships". That will the frontier over the next twenty years, then we'll tackle senior issues ...
• Managing #1 son as an almost 17 yo is much easier than managing him as a 4-5 yo. He used to only respond to positive feedback, which is like rowing a boat with one oar. Now he has some understanding of consequences and of the near future, so we have one and a half oars. On the other hand, the stakes are far higher, the quirks more complex, and the cost of mistakes far greater. At least we're holding our ground though.
• #1 son did pretty well at his summer "job" working with horses at a (jewish) summer camp. That camp has been good to our (gentile) family.
• #1's high school is hell bent on serving the elite white community (see this, this and this), which means it's competing with academic-strict white charter schools. Big focus on strict grades, no retakes, etc. On the other hand, his teachers seems an experienced and sensible group -- including the brilliant one who is going on maternity leave (shouldn't be allowed -- just bring baby to class :-).
• St Paul schools have realized that their systems for net filtering and use controls are completely broken [1]. Their response is to edge towards a "zero tolerance" policy of net misuse. This will be a problem for quite a few teenage boys, but it's an almost impossible problem for teenage boys with substantial frontal lobe dysfunction. On the other hand #1s stealth is astounding [2] and his special ed teachers scoff at the written policy. So we'll track this.
• Along the lines of Come a long way we recently competed the St Paul Classic. We toured the route by car a week before the event, and we've done portions of it many times, but it still went remarkably well. #1 easily completed the 30 mile route, and was a safer and wiser rider than every other teen and 80% of the adults.

[1] I completely sympathize - there is literally no way to fight this without a LOT more help from Apple and Google -- neither of which show the slightest interest in helping parents or schools. This is especially true because the same technologies that protect us from hackers (and the NSA) also break old-tech filters. Ultimately though I blame parents -- who don't pressure Apple/Google to pay attention.

[2] HIs ability to cover his net tracks is a weird pseudo-savant feature akin to his freaky visual processing. These kinds of capabilities are why I remain unsure of his future limits.