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.

Smartphone calendaring: a brief survey

i’m collecting some data on how people do calendaring on their smartphones to support my special needs smartphone for independent living book project. If you’re reading this before December 20th 2015, can you please fill out this 2-3 min, 3-7 question survey? Thanks!

Autism and the police: St Paul Police Department Western District leads

Most of the autism meetings I attend have a largely white audience. Tonight’s ‘CARE Project Meeting’, hosted by the St Paul Police Department with help from the Autism Society of Minnesota, was different …

AUSM - Autism Society of Minnesota - CARE Project Meeting

Officer Robert Zink and the St. Paul Police Department will host an open meeting about its CARE Project (Cop Autism Response Education). Officer Zink and the department invite the community and other precincts to participate, learn more, and offer suggestions on the CARE Program.

Dec. 14, 2015 from 6:30-8 p.m.

St. Paul Police Department
389 Hamline Ave. N.
St. Paul, MN 55104

It was an impressive presentation to a diverse audience, including several who’ve had unhappy and sometimes well publicized problems with local police (transit police came up a few times). Despite that history the audience was supportive, seeking more action sooner rather than something different.

Officer Zink has two children on the autism spectrum, with the help of supportive Chief he’s been leading a police-community initiative to improve the police encounters with teens and adults on the spectrum. He’s been at this in for a few years, but now he’s morphed into a 1-man community service organization with a taser on the side. Obviously one man can’t do this alone; the SPPD is scrambling to scale up. That’s why they marketed this particular meeting..

It’s early days. They don’t yet have an informational handout to share with our local health systems. There’s a unofficial Facebook Page, otherwise communication is small scale - except for a recent newspaper article. They’re working to train local officers to manage escalations, understand meltdowns, and, in one case, manage large scary angry men with M&Ms (Officer Zink has an amusing story of running into a Walgreens, jumping to the front of a long line, and running off to a squad car with the candies. That was probably not a happy queue.)

There’s an optional registration program so, in theory, police called to a household because of a crisis, such as assault of a sibling or parent or self-harm, will know how to respond. Our family will be completing the contact form:

The SPPD western division is setting up protocols for contact before 911 calls, including home call introductions. Less predictably, they’re setting up post-911 follow-up visits as well.

Bottom line: One of the most encouraging autism community developments in several years.

Special needs smartphone: draft sample sub-chapter on Google Nest Cam use

Early version …

….Some people with cognitive disabilities may be prone to impulsive anger, and may need monitoring when home with siblings but no parents. A teen with ADHD and autism may alleviate boredom by pestering a sibling. Head injury related to seizure activity could lead to extended unconsciousness. Kitchen hygiene neglect may be causing roommate or landlord problems.

These are all familiar problems for supporters of special needs teens and adults. In each case we’d like to be able to peek around the corner, even while we’re at work or simply away from home. We can do just that with a smartphone and some gear, we can even make warnings and ultimatums come out of thin air.

The gear is something like Google’s “Nest Cam”, formerly known as the DropCam. The Nest Cam is marketed as a home security device for $200 plus a $100/year fee for access of up to 10 days of stored video. At the moment it requires a WiFi network; Nest doesn’t sell a mobile cellular version.

For the situations mosts of us are dealing with we don’t need the stored video, we just need to be able to launch the Nest Cam app on our iPhone or Android and see what the camera shows. The Nest Cam has a speaker; the app lets us “speak” from the camera and see and hear responses. It’s not suited to conversation, but it works well for “Stop That!”. The smartphone software can be be used with multiple Nest Cams.

There are less expensive competitors, but the Nest Cam comes with excellent Android and iOS smartphone software and lifetime access to secure, reliable, on-demand streaming video backed by Google’s infrastructure. For our particular needs it’s the only solution worth looking at.

The Nest Cam has a single power USB power cord. It can be mounted on a wall, but most users will place it on a convenient shelf. It’s relatively easy to connect it to an encrypted home WiFi network. When you connect to a Nest Cam from a smartphone it begins streaming video to a secure Google server and from there to your phone. At that point you can see, and more importantly hear, what’s happening at the camera locale. Depending on what you’re seeing you may sign off, phone, or use the built-in speakers to deliver a suggestion.

The standard Nest Cam configuration turns a red light on when in use, but the light can be disabled. If the video-active light is disabled there’s no way to know if the video is streaming or not.

On demand notification-free monitoring has an ominous flavor. In practice, of course, it depends on the context. The average teenager does not want Mom or Dad doing secret observation, but if it keeps their older brother calm and well behaved around the XBOX many will welcome it. In some cases a special needs teen or adult will find the existence of the camera calming, so that in practice it is rarely used.

In other cases the camera may be masked and the video light will warn that an audio channel is opened. Then video may be enabled or not depending on the circumstances. In other circumstances video might be activated only if both text message and phone call go unanswered. There are many ways to use this technology wisely and to everyone’s mutual satisfaction….

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.

529 ABLE accounts and supplemental needs trusts for disabled adults - a few bullet points

We set up the legal aspects of a supplemental needs trust for #1 several years ago — including a taxpayer ID for the trust. Then we kind of dropped the ball; I don’t think I quite understood the next steps in setting it up.

Today we reviewed current law with a specialist attorney. This is much too complex a topic for me to fully describe in a blog post tonight, but I’ll share some of the key points I wrote about.

• Special needs trusts, supplemental needs trusts, and, I think, the new 529 ABLE plans all require proof of disability, specifically the inability to work with reasonable supports. (If you think about this too much your head will hurt — especially given current fashion (consensual hallucination) for non-adaptive workplace employment.)
• The assumption behind all of these plans is that #1, sooner or later, receives SSI benefits of $720/month and medical assistance (yeah, extreme poverty). The old-school approach was for the $720 to be paid to a care business which would use it for room and board and provide $92 (precisely) back for spending money. That approach is now being replaced by fairy dust and wishful thinking by something else that nobody quite understands yet.
• Somewhere to the side of these SSI payments are something called “waivers”; funds that can be used to pay for a personal care attendant. There used to be a special waiver program for developmental disability but those funds are exhausted. Now there’s one underfunded program of waivers that covers both physical and cognitive disability (CADI). These are not relevant for us quite yet.
• The “best” way to establish legal disability, and hence eligibility for what we’re interested in, is to receive SSI disability. That can take a while. An alternative route is to work with #1’s physicians on some legal disability statements. We’re doing both.
• In general, if you get money when you’re on SSI, through any means, you lose SSI contributions and your maximum bank balance is $2,000. Except see below.

Ok given the above, what about the ABLE and the Trusts?

• Special needs trusts are not of interest to us. These are funded by the disabled person’s money, typically as the result of a legal settlement.
• 529 ABLE plans are not yet operational. There’s real uncertainty about how much supervision/independent control there will be, and fees are likely to be relatively high. These can be funded at a maximum yearly contribution of $14K and a maximum total balance of $100,000. The money is under the direct control of the named beneficiary — which for #1 would mean huge candy purchases. If the beneficiary dies the balance typically goes to the state. I’m not clear on exactly what 529 money can be used for, I believe housing and education are the big ones. We’re not focused on these yet but depending on what they can be used for they might be a complement to supplemental needs trust.
• 529 ABLE plans can have tax-free investment growth, but unlike educational 529s they can’t be transferred.
• Supplemental needs trusts are what we’re doing now. Money from the supplemental needs trust doesn’t reduce benefits as long as it’s not paid directly to #1 and it’s used to buy “things”, like clothing and bicycles and iPhones and mobile service — but not “food or shelter”. Not shelter, that is, except that the trust can “contain” (own) the title to a residence. A supplemental needs trust has an associated taxpayer ID (the attorney gets this).
• The Supplemental Needs Trust is basically funded by our will. So there’s not much in it until we both die.
• The big deal with a Supplemental Needs Trust is real estate. Assume we buy a residence that #1 and others live in. While we’re alive we’d typically own it and he’d pay rent (legal requirement) out of SSI payments. When we die the Title is willed to the Trust, presumably along with money to pay taxes and the like. I think.
• The supplemental needs trust can be liquidated. There are no tax advantages to this trust.

Yes, this is a mess. I’ve probably mangled it, but it was in bad shape to begin with

 

See also:

• A grave problem with 529 plans and special needs children 5/2009
• Sundry notes from a meeting on special needs and the law 5/2009

Update 2/2016: 

Our attempt to work with #1’s psychiatrist on disability opinion was a dismal failure. She wanted nothing to do with it. I suspect that might be common. So I think SSI judgment may be only route.

Special needs smartphone: looking for a Notes app with a difference

I’m working on a book about iOS and Android smartphone use by special needs teens and adults; It will have a special focus on supporting independence. The project is in its early stages, but sometime in the next few weeks it should get a companion domain and a blog. In the meantime I’ll have a few posts here on related topics.

One of the things I don’t have an answer for is the “deletion problem”. My #1, for example, hates clutter. On an iPhone that means he compulsively closes open apps, deletes his browser history, old email, saved images, iMessages and even the Notes I’d like him to have. Notes that consist of things that it would be useful for him to remember.

The only thing he doesn’t delete are his Contacts.

From a psychological perspective this is interesting, but since he has significant memory disabilities it’s rather self-defeating. So I’m looking for a solution in the myriad of iOS note-taking / extended memory solutions. My high level requirements are:

1. Plain text support (anything more is either “nice” or unwanted complexity).
2. Search
3. Web client (key to a support person creating or contributing to notes). Native clients are a plus, but the support model I’m using must include Chromebook
4. Efficient backup/restore of all or part of a notes collection from the web client and/or the ability to make some subset of notes read-only for our smartphone user.
5. Simplicity.
6. An exit strategy — ability to move content to another solution if needed.
7. At least a 3-5 year expected lifespan (which is a long time in this market)

Apple’s native Notes.app comes close to meeting my requirements. It even has limited undelete functionality on iOS, but as of Dec 2015 not via iCloud [1]. (I investigated Apple’s legacy support for Google (Gmail) IMAP notes sync, but this does not allow remote authoring or backup and has other limitations.)

I personally use Simplenote; it can be paired with nvAlt on OS X to allow bulk import of a standard set of text files, but that’s a geek-only solution. There’s no backup or import ability in the Mac client.

Anyone have ideas?

- fn -

[1] Apple’s support article on iCloud Notes data backup is a bit humorous. “… Copy the text of each note and paste it into a document on your computer, such as a Pages or TextEdit document. Save the document to your computer.” Must have been painful to write that!

Update: Shawn Blanc’s 2013 post has some good ideas. Reviewing it I see Simplenote eliminated Dropbox sync, and Justnotes.app, which Shawn liked, has been discontinued. Byword, Nebulous Notes, and Notesy use Dropbox as a sync repository; Byword and Nebulous Notes are complex but Notesy might be an option. Microsoft OneNote is powerful and impressive, but also complex.

Update 2: Simplenote.app allows sharing of note by the email addressed associated with a Simplenote account. Shared notes can be collaboratively edited, which is good and bad. On the other hand, if one collaborator deletes a note then they are only removing themselves as a collaborator — every other collaborator keeps the note. So this may actually work reasonably well, with the additional option to use nvAlt (Mac) or ResophNotes (windows) for more robust backup and restores.