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)

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.

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.

Smartphone for All: Examples of using Apple Notes.app or Google Keep.app to extend memory and independence

A Smartphone for All: book excerpt, from a chapter on using Notes. 

This post has been updated with some excellent additions by Deb T. In addition to being a part of the book, it also illustrates how complex a special needs adults independent living really is.

————

Whether an Explorer is following the Apple Way or the Google Way their notes will look very similar. They’ll typically start with a handful of Notes created by a Guide, but the number will grow over time. Some Explorers will add their own Notes. 

Most Explorers will prefer to browse Notes rather than search for them. Typically Notes will be ordered by the date they were last changed with the most recently changed Notes at the top. The first line of a Note will typically show as the Note title, so make it descriptive.

If an Explorer is using the Search ability they are probably also creating and editing their own Notes. When using this function it’s helpful to put likely search terms in the note, perhaps as a list of words at the button of a Note.

Notes can be organized into named collections called “Folders” in Apple Notes.app or organized by “Labels” in Google Keep.app. This adds complexity however and should only be considered if an Explorer has more than 50 notes and really dislikes using Search.

There are many ways to use Notes to extend an Explorer’s memory. The following table gives a few examples taken from real world experience; this table also shows how complicated an Explorer’s routine can be.

Many of these Notes hold non-sensitive or public information, but some require that both the Explorer’s smartphone and Cloud information are truly secure. We reviewed this in Setting up an Explorer’s Smartphone including an encrypted smartphone, long letter-number smartphone unlock codes, fingerprint identification, a responsible Explorer, short timeout auto-lock, and a strong Cloud password.  Some low end Android phones may not be encrypted, don’t put confidential information into Google Keep on those devices. In the table below items that require a secure device are italicized.

 

Note Title	What’s in the Note
Banking information	Bank account information, how to make deposits or withdraw money or find balance, ATM PIN code if Explorer has difficulty remembering it, numbers to call for a lost or stolen credit card.
Bicycle	Bike maintenance advice, serial numbers, what to do if lost or stolen.
Budget	Notes about when bills are due, how to pay, wise limited on spending.
Church, Temple, etc	Names of religious leadership, times of services, people who are part of religious life, social events coming up.
Clothing sizes	Sizes for clothes, boots, shoes.
Combination locks, PINs and passcodes	We all have too many of these. A single Note is a good way to hold them all, but of course this requires a secure smartphone and a secure Cloud.
Dates	Important dates, such as birthdays and anniversaries. (Duplicates what’s on the Calendar, but often useful to have separately.)
Emergency Information	Who to contact in case of an emergency. This is not the Emergency information that’s part of Apple Health.
Family photos	How to view family photo shares.
Financial worker	For many Explorers the Financial Worker (benefits admistration) is separate from the Social Worker and there are different procedures to follow. Some Explorers will want Notes combined, others will like separate notes.
Fun stuff	Notes to support local recreation, leisure and fun activities; a helpful resource for independent time scheduling. An Explorer or Guide may use this Note when working on the Calendar. For example: movie theater, pizza and sub delivery, church, etc. Gym information might go here instead of the Gym Note.
Gym information	Open hours, class schedule
Home	Apartment/group home details including contact numbers (also in Contacts), look out procedure, how to request maintenance, how to work with the rental office.
Library information	Schedule, library card number, WiFi procedure.
Medical history, dental and health insurance numbers	To share with caregivers, particularly in an emergency. Includes major medical problems, current medication, providers, people to contact, insurance numbers.
Neighbors	Names and addresses of neighbors, particularly for Explorers who have difficulty remembering names or matching names to people. This may duplicate what’s in Contacts.app (address book) but is helpful to have separately.
Passwords and credentials	Username, passwords, web site address (URL), “Secret questions” with the answers used.
Relatives and special people	Names and birthdays of extended family and special family friends. May be combined with Neighbors.
Residential program manager/staff contacts	Some of these will also be in Contacts, but this is important information for many Explorers. It deserves a separate Note.
Smartphone tips and how to	Basic smartphone tips. If appropriate for Explorer a reminder of how to find the smartphone manual (example: iBooks).
Social worker	Name of social worker and how to work with them, particularly around bus and transit services. The Transit Note might refer here, and the Social worker information might also be in Contacts.
Social Security and Disability Information	Contacts and details, spending limits and reporting requirements.  Date of next follow-up (this would also go in the Calendar).
Sports teams and social group	For each sports teams and social group useful information such as link to team calendar, names and numbers of coaches and players.
Staff and aides	Names of support staff and contact information. This will also be in Contacts.app
Transit	Guides to transit including bus pass information if applicable. Reminder of how to use a transit app to get bus information.
Travel and packing	Packing and travel advice for a short trip.
Web addresses	Generally web addresses will be part of other Notes or they’ll show up on the Credentials page, but in some cases it’s useful to have a short separate list.
WiFi locations and WiFi passwords	Explorers need WiFi to backup their smartphones or download new apps, but they may not have WiFi at home. In some cases it may be useful to list locations and passwords, such as Coffee shops or the Apple Store. Library WiFi information may go here or in the Library Note.
Work and work training program.	Supervisor and care manager and any work requirements or procedures including transportation arrangements.

 

This is a long list, but the the more independent an Explorer is the more their Notes collection will grow. A Guide should start with 4-5 Notes then work with an Explorer to build out the Notes collection.  Many Notes may begin as information sent in an Email; very few Explorers will search email for reference information.

Some Note content overlaps with Calendar and Contacts. A moderate amount of duplication is needed, but too much becomes a maintenance burden. The appropriate location will vary by Explorer, but the Calendar is particularly important.

Most Explorers will learn to update and manage their Notes; that is a great life skill to encourage. Managing Notes includes deleting obsolete Notes, a Guide will want to make Notes review, including deleting obsolete Notes, a part of their scheduled weekly Explorer support time.

Curbi - iOS controls for special needs teens and adults

curbi gives parents, guardians and other caregivers the monitoring technology Apple built for corporate customers. It’s $7/month “Per household”.

You can’t use it with school iPads because they already have similar “management profile” technology installed. It should work with home devices.

It’s something I’m considering.

Spectrum connections - social club for teens and young adults (MSP) on the autism spectrum

Spectrum Connections Meetup group for social outings among teens and young adults. We haven’t tried it but we’ll see if #1 or #2 are interested.

#1 would be very interested if girls were involved. Unfortunately autism disorders have an official gender ration of 4:1 or 5:1. In the disability setting the ratio feels more like 8:1.

For #1 this ratio might be the worst thing about his cognitive disabilities. Along with not being able to go to university of course.