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.

ABLE Plans and Special Needs Trusts

#1 is now on either SSI or SSDI or both. Yeah, we’re not sure. Might even have changed. This is a lot weirder than I expected.

There is, with one or the other, apparently a peculiar incentive for caregivers to retire at 62 rather than, say, 67 (something to do with family Social Security caps and spouses). There’s also something in there about Medicare with MA Backup after two years on SSDI, claims that it’s best to do at least one year of SSI before SSDI, 9 month income averages, retroactive payments that can be clawed back and so on.

The accounting is interesting — trying to stay below income and asset caps.

With SSI/SSDI we can get an ABLE 529A account so that he can save without running over his asset caps. The funds can only be used for things that improve health/mobility/function — but that’s could cover a lot of ground. Maybe mobile data services? Fitness services? Golf gear? Bicycle?

The best discussion I found on ABLE plans was in the respected Bogleheads forum:

You are not going to find any 529 ABLE plan with no annual account fee and expense ratios of 0.1%, certainly for non-residents. I call the reason for this the "529/HSA Effect". While they might be quite popular among Bogleheads, only a distinct minority of the population takes advantage of either of those plans. With volume comes competition and lower costs. Now consider the minuscule population eligible for 529 ABLE accounts. If they hadn't been smart and piggy backed on Section 529, they would be even more expensive.

ABLE plans will have the same pattern as the majority of HSA accounts. Their owners will be making a number of withdrawals throughout every year such as by a debit card. Compare this to retirement accounts, where most withdrawals only happen in retirement and then maybe once a year. This adds significant administrative costs.

529 plans, especially ABLE accounts can only be administered by a state. When does a state see money and not figure out a way to skim off the top. The dirty little secret is that a significant portion of program management fees goes to the state. For example, Maryland and Oregon take 0.30% in administrative fees themselves in their 529 ABLE plans.

The best I have seen so far is LA ABLE for Louisiana state residents only. No annual fee, no program management fee and 0.07%-0.15% for six Vanguard funds, including the four LifeStrategy Funds. There is a state alliance of GA, KY, MO, NH, OH, SC, and VT that offers funds with asset based fees of 0.31%-0.34% for those state's residents (0.57%-0.60% non-residents).

For non-residents the National ABLE Alliance of AK, CO, DC, IL, IA, IN, KS, MN, MT, NC, NV, PA and RI. Offers funds with asset based fees of 0.34%-0.38%. Their program management management fee is 32% and I'm sure the states gets a significant chunk of that. The underlying expense ratios are 0.02%-0.06% (based on fixed portfolios using Vanguard, Schwab and iShares funds/ETFs). They have a $15 ($11.25 e-delivery)/qtr account fee.

The best plan for non-residents based on cost might be Tennessee's ABLE TN, offering Vanguard and DFA funds with asset based fees mostly in the range of 0.35%-037% (Wellington at 0.35%) with no account fees. As always the devil is in the details. E.g. the plan does not offer a debit card.

Do your own due diligence. You can check all the available state 529 ABLE plans here. 529 ABLE Accounts

Ugh. Much higher fees than I’d hoped for.

We’re working on the special needs trust. We’ll probably use Vanguard to hold funds, have to dust off old Trust documents to create the trust. Good discussion on Trust and home purchases here.

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

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

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

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

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

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

- fn -

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

Adventures in Special Needs travel: Hawaii

The family went to Hawaii. Two special needs adults, one neurotypical daughter and two parents. There was a lot of planning work and a lot of on-the-fly adjustment. We chose Honolulu/Waikiki because our Explorers are more comfortable with concrete than with nature. The trip was a success, in part because, by sheer luck, the atypical rainfall spared both golf outings with #1. 

Luck aside — some things that worked well:

1. Direct flight. A five hour mechanical delay (Delta) was stressful though.
2. Single residence located in Waikiki with kitchen and good parking. We ate most meals there. Nearby groceries. Many things we could walk to.
3. Fairy detailed advanced schedule that we then swapped around based on weather.
4. Copious research.
5. Explorers now independent enough they could stay in hotel room or go off on their own in many settings.
6. Private tour (“Oahu Private Tours" <jason@oahuprivatetours.com>). We got lucky with our guide too; #1 is on his best behavior with young women.
7. We rented a van (very expensive in Hawaii by the way).
8. Good attractions for our Explorers: Zoo, Aquarium, Waikiki beach, Paradise Cove snorkeling (quiet, no Hanauma stress), Foster Botanical Gardens (tranquility), Diamondhead hike, “Edge” restaurant hotel table that was near beach so we could mix food and sand…
9. English language generally worked, McDonalds and Subway ubiquitous.

It was a very big expense of course few families could afford it. We did it this one time because we could manage cost and the children are leaving school settings, entering work, moving out soon, etc.

It’s perhaps useful to know this can be done — and the general approach might work for others. It’s a long way from our 2010 family trip to a nordic ski resort and 2008 road vacations but I don’t think we’re quite ready for, say, a week in Korea.

When imagination becomes memory

I think this is terribly important, but I’ve never seen it described. So, in a few minutes, I’ll share what I think.

Almost animals have memory, save perhaps the simplest single celled organisms. We think plants have a form of memory as well. There’s nothing uniquely human about memory.

Imagination is less common. It’s not uniquely human either; crows, wolves, cephalopods, cetaceans, primates — they all have some form of something that looks like imagination. We think humans have much more of it though. We can create memories of things that have not happened or did not happen. Imagination is a form of ‘false memory’ that we know to be false.

Except … when we don’t know it to be false. And there lies a problem — but I’ll come back to that.

When did humans develop the ability to create false memories and know them to be false? We think it is older than what we call “human” now — we think our fellow modern hominids, Neandertal, Denisovan and more had well developed imaginations. We suspect we have more of this talent though, and that we might have picked up additional abilities as recently as 50,000 to 75,000 years ago.

That’s very recent evolution, so it’s not surprising that, like strength and height, imagination might vary among people. It might vary in the ability to create “false” memories, and, perhaps independently, in the ability to know them to be false.

The latter variation is key. We know from research over the past forty years that it is relatively easy to create false memories in many people, but we also know that some study subjects, typically healthy university students, are more resistant to false memories than others. If we consider imagination as the generation of false memories that we know to be false, then similarly some people will be better at retaining the knowledge of what happened versus what they imagine happened.

So we know this ability to divide imagination from memory varies. It is plausible, and it fits my own experience, that people with “connectopathies” and other cognitive disabilities may have not only more limited imaginations, but also more difficulty separating the memory of what is imagined from all other memory.

I have seen this in someone close to me. When he was a child I would be upset that he was not telling me the truth, but over time I have come to believe that for him memory and imagination are inextricably blurred. What he imagines, what he wishes to be or have been, is poorly separated from what has been. There is just enough separation, I think, to create anxiety or agitation around the recall of false memory, but not enough to tell what is true memory and what is imagination.

I don’t think this problem is unique to persons with an IQ below the 5th percentile. I suspect it’s true for very many people, and it may explain why so many today are susceptible to novel kinds of media manipulation.

It’s a problem we need to research and understand both for persons with cognitive disabilities and for our society.

Qustodio "parental" controls for iOS - no longer compatible with modern web

My Qustodio review [1] was delayed because I signed up for the School (professional) version rather than the Home version (long story, not interesting). The two versions seem to have a lot in common, but there important differences. The Home version has an iOS app for managing users, the School version must be managed by a desktop browser (no app, no support for iOS browsers).

Unfortunately I discovered fatal flaws to Qustodio’s approach that mean I won’t be testing their home version. The short version is that they route all traffic through a VPN that isn’t compatible with modern requirements for SSL connections. 

For reference here at the notes I prepared on reviewing school/professional version.

—————————-

The “School” version of Qustodio is marketed to small schools, non-profits and libraries. I signed up for the 5 device $10/month plan.

Like the Family (home) version the school version manages desktop and mobile devices, but I only looking at their iOS device support. I installed on 3 iPhones, two in active use by my Explorers, one a test phone for my book project. This is what I found.

How Qustodio (school) works

Qustodio uses Apple’s iOS device management technology. They install a “Configuration Profile” that  allows remote configuration of some of Apple’s built-in Restrictions. The installation is simply downloading the Profile from a link. Once installed all net traffic is routed through a Qustodio VPN. 

When Qustodio is installed the iOS VPN setting will be enabled. A user can toggle it off but this is really a UI error, it will turn itself back on.

Customer support and leaving Qustudio: C

I worked with customer support to see if I could switch my account from School to Home. Customer support was responsive but they are not native English speakers. They may be relying on translation software. They didn’t understand my question. (I’m pretty sure there’s no way to do that transfer.)

To leave Qustodio one must first delete the Profiles from each device. To delete one must know the password that was emailed to the account manager during installation. There’s no way to retrieve that password from the management panel (there must be a way for customer support to retrieve it!). [Update: It’s obscure, but if you go to Settings and Devices and delete a device you’ll see a warning dialog that shows the removal password for the device.]

The next deletion step is to find the Profiles. On one device the Profile was under the main Settings menu, in two others Profiles were under Settings:General:Profiles. I have no idea why there were two different locations, it didn’t seem to be related to the installation method.

The uninstall process doesn’t scale to a large number of users, the “school” product is aimed at very small schools.

The future of the product: D-

Google is slowly rolling out their own web based device management platform for families. They are responding to pressure from regulators. This could be a big deal, because Android’s built-in parental controls were lousy. Apple, again responding to pressure from Europe and even large investors, may also provide a web based way to manage devices. Even if Apple does a poor job these two developments may kill the home user market and Qustodio’s school solution is pretty limited.

Alas, there’s an even bigger problem - see Usage.

Installation: B

Installation isn’t too bad as long as you don’t try following the directions for the Home version! Create  user in the web management console, then either send an email to their device or use a browser on their device to navigate to www.qustodio.com/pro/downloads. Then click the links and complete the install. Just be sure not to save the management console password to their device when prompted.

Usage: F

Alas, the Qustodio VPN doesn’t handle SSL connections correctly. Google treats it as a “impersonating” connection, other sites produced an ERR_SSL_PROTOCOL_ERROR message. OS X parental controls had similar issues 5 years ago; since then SSL connections have become standard. Today nobody would consider this acceptable. The final nail in the coffin is Qustodio’s web site doesn’t address the problem. That suggests a limited future for their iOS product.

- fn -

[1] I’ve been spelling it “Qustudio”. It’s actually Qustodio. I wonder how they came up with that name. I’ve gone back and fixed up my old posts. 

Update 2/17/2018: Qustodio never responded to my questions about their VPN service. In addition to the issues above #1 son was being routinely asked for his VPN password. I removed all the phones from the service, and found when you delete a device you are given the device password. So it’s available, but obscure. Then I removed all accounts and closed my account. Account closure seemed to work, now I have to see if billing stops.

Vulnerable user support: Qustodio review and PC Magazine parental control page

It’s been a while since I reviewed MMGuardian and similar parental control apps. The last time I did this I promised to took at Qustodio, but life got in the way. Now I’m back to the topic, preparing to update one of the tougher chapters in my book - Smartphones for All.

I signed up for Qustodio and quickly ran into some issues with possibly outdated documentation. I say “possibly” because there may be some quirks related to my subscribing with an old test account they gave me. So I’ll get to evaluate their user support too. I’ll put that post out after I get things fixed.

In the meantime I’ve put out a call for feedback on use of “parental control software” to support vulnerable iPhone users of all ages. I’d particularly like to hear from users of Qustodio and MMGuardian with iPhones.

PC Magazine (I remember their glory days!) did a pretty thorough review of Qustodio, through it I found their “parental control and monitoring reviews” stream. The latter is a good general resource, but they should have included MMGuardian.

The Qustodio review makes much of how ‘old’ the Qustodio site looks. I didn’t bother me, but having an ‘old’ looking site can be a marker for weak financials. The review is Android-centric, that makes sense because there are effectively no parental controls with Android. If you want something you need to pay. iOS devices have built in restriction abilities so they get less attention. They still hit most of the key points for an iOS users, but my review will be more extensive.