Wednesday, August 10, 2016

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.

Monday, July 18, 2016

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.

Thursday, July 14, 2016

Besides this blog: Facebook page for my book project

My posts are always intermittent, but they’re a bit less frequent as I’ve been posting on my book project in a Facebook Page: I’ll create some ‘check it out’ posts in future for people who don’t do Facebook, but if you’ve been assimilated there you might “Like” that Page.

Here are some recent posts of possible interest to people reading this blog. You don’t need to login to Facebook to read them, just dismiss the annoying dialogs that might appear:

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.

Sunday, June 26, 2016

Ella enchanted: understanding ODD

#1 has more than a few features of oppositional defiant disorder. Especially before his meds kick-in.

It occurred to us today that it's the opposite of the heroine's curse in "Ella Enchanted". Instead of saying yes to everything he must oppose it, even if he has no particular objection.

There is something comforting about the struggle.

Saturday, June 18, 2016


“Pride goeth before the fall” doesn’t mean first you lose your pride then you fail.

It means “the famine goeth before the plague” or “the herald goeth before the king”. Get cocky, hit the wall. The sin of Hubris.

Did that one this weekend. Asked too much of my guys. 

It could have been worse. Ended up being a lot of driving for me and a lot of stress and yelling for #1, but there was nobody around but his brother. I could have handled my own frustration better, but I think we all survived with minimal scars. The car didn’t crash. Nobody rode their bike over a cliff.

The morning after I did my retrospective. What was I thinking?! I should have done the math. On an event that combined a new setting and not one but two novel and high stress activities all of which were weather dependent… what were the odds it would work out? Maybe 1/5.

That’s hubris. We’d had a string of successful adventures and I got cocky.

I should have had more contingency plans and I should have had at most one novel and stressful challenge to meet.

I get to try again this weekend …

Tuesday, June 07, 2016

Atypical minds and developmental support: we haven't learned much in 15 years

I wrote the first ‘best you can be’ post almost 12 years ago. #1 was 7 then, #2 was 5. E and I already had years of experience with cognitive disabilities, autism spectrum, and atypical minds. We already understood how worthless the classifications we’d studied in medical school were. Autism, ADHD, Asperger’s (defunct now) — very rough labels that are primarily useful for obtaining services and perhaps for initial medication selection.

We thought there would be progress. 

There really hasn’t been much that we’ve seen. We still have most of the original classifications (frozen in DSM V) and I haven’t seen any useful research emerge. We’re going nowhere.

If someone were to drop a few million dollars on me I’d start by defining 5-8 axes of thinking/feeling — measures of things like external-word vs. internal-world orientation, spatial processing, impulsivity, short-term memory, etc. Things that can be tested and measured. 

I’d mine the existing literature for axes to study, but otherwise I’d toss out most of it. Test a few thousand late teens/early adults and plot them on a “spider graph”. Run the analysis to see if there are any useful clusters. If there are useful clusters, then name them. Use that as the basis for future research.

Basically, start over.

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.

Tuesday, May 31, 2016

Beware passport process post-guardianship

We’re renewing #1’s passport. Should be routine, but he is now in guardianship.

The post-guardianship passport process is currently undocumented. Our local passport office didn’t know the process. We’re now told we need not only the letter of guardianship but also the court order. All certified. The letters we’ve received on this have been misleading or incomplete.

It is an amazing mess going on for 2-3 months now. Our next stop will be to contact the office of our local Senator.

Be warned.

Sunday, May 22, 2016

Universal data access for all Americans - what would it look like?

The NYT has another “digital divide” article, this time using Detroit. I think they might be doing a series on this topic.

The problem of net access isn’t unique to Detroit, it applies to every low income American, which includes pretty much every special needs adult. A smartphone (net phone?) isn’t an option, it’s a necessity for modern life [1]. That’s one the reasons I’m writing my book on smartphones for special needs teens and adults.

It’s not hard to give everyone a smartphone. We’ll be drowning in cheap Android devices soon. The problem is data access. Home WiFi, which is notoriously unreliable and complex, costs at least $35/month in most markets. Home WiFi is too complex for most people to maintain anyway. Cellular data costs about the same per month, but it’s tricky to meter and it’s per-person, not per-family. For a family of five we’re looking at $175 a month — too much for a low income family.

So we need some universal mobile data access that everyone gets. Something around 1GB a month. That’s enough to support essential interactions, but not enough for streaming video. 

I’m thinking we’ll either end up with something that’s funded by advertising (Facebook, Google) [2] or a public mandate. It might be a good idea to do both. Either way it will need to incorporate some kind of intelligent data use and filtering.

Whatever happens supporters of special needs adults should be engaged.

[1] Many government programs still have ancient web sites that don’t work well on a smartphone browser. The good news is that hackers are tearing those web sites apart, so they’ll need to be upgraded. In time we may need to bring ADA suits against government web sites that are not smartphone accessible.

[2] Low income advertising, best seen on daytime TV, is often predatory. That is, it’s advertising for services and products that are largely harmful scams. That will be a problem.