Adolescence and beyond

The years go by.

One SNC (special needs child) is doing very well. So well his teachers want to end his services and his IEP. We think they're premature, so we're negotiating for measurable milestones. If he passes those then we're ready to try the next grade without services.

Teachers and administrators have as much trouble with measurable milestones as, for example, software developers and physicians. Measurement is painful

Another SNC is also doing well in many ways, though we do not expect him to live without services. His written expression has improved greatly thanks to excellent teachers, and perhaps due to his fairly regular texting. He's done so well at texting that we've gone to an unlimited texting family plan. I hate the $360/year cost, but it's cheaper and more effective than paying for a writing tutor or for OT work. Too bad I can't pay for the family texting out of my health flex plan.

We're working through typical adolescent issues. We've had some luck with language modulation by setting up a sticker reward system for a day without any banned words. His siblings quality 100% of the time, my son hates it when they get a column of stickers (computer time or money) and he doesn't. Over the past two months this program has, to date, largely eliminated the paint blistering language issues we had.

I continue to be bemused and surprised by his computer skills. My wife is in the 98th percentile on her medical board exams (she used to be 99th but now practices very part time), but my low IQ son is much more skilled than she on our computers. He has an intuitive grasp of how software works, and delights in finding gaps in Apple's not-entirely-robust parental controls system.

Similarly he shifted fairly easily from a not-too-friendly Nokia phone to a user-hostile Windows Mobile phone. This is a peculiar facility we can use. (I'm inclined to buy him an iPhone. The two drawbacks are that for his demographic iPhones are both uncool (geezer phones) and very quickly stolen (for sale to geezers, presumably).

Our thoughts now look seven years ahead to supported living arrangements and to the possibility of residential occupational training programs. A colleague's son is entering one of the latter programs and I'm researching whether anyone is developing similar programs in Minnesota.

Understanding an unusual mind

One of the pop-psychology characterizations of autism is that it's a "model of mind" problem. Persons with autism, it is said, cannot "model" the minds of others. This is sometimes associated with claims that autistic brains have "mirror neuron" defects, and that "mirror neurons" are the physiological foundation for "model of mind" functions.

I call this "pop psychology" because it's very hard to test this class of theory. We simply don't know enough about how the brain works. My own personal speculation is that brain assembly is always problematic, and in the micro-evolutionary process of adapting brain infrastructure to "reality" various subsystems are repurposed (sacrificed) -- including those involved in modeling other brains.

Whatever the eventual utility of the "model of mind" theory, I find it useful to create my own model of my son's mind (actually not just one son's mind, but I'm simplifying here). It's a very different mind from my own, so I have to be thoughtful about how I model it. I can't use my own mind as a template for how his works. He has very different ways of "making decisions"; he has different values, different needs.

Creating a model of his mind is an iterative process. I make assumptions, test to failure, and revise. He changes too, and I have to revise my thinking. In this I'm guided by my three top special needs references:

1. 3 Steps to Yes: The Gentle Art of Getting Your way (Gene Bedell) - particularly important for the adolescent phase of life
2. Greene - The Explosive Child
3. Training exotic animals - a short NYT article - see also Kazdin
4. Be the Best You can Be: Reading about autism and ADHD - our personal favorites

My current model of his mind might be useful to those who need to create their own models of different minds. Here are the key aspects and some working implications of them:

1. He needs to know where he is in time. If he doesn't know, he becomes very anxious. He needs to know the detailed schedule for the day, and he needs to know the upcoming week to months schedule in less detail. It has been helpful to put paper calendars up with the high level timeline, and to give him a Google Calendar account that emails him daily agendas and sends appointment reminders to his phone.
2. He needs to know where he is in space. He becomes agitated in environments where he is not confident of his navigational ability (example: forest trails). GPS is our friend, since with it I can demonstrate good navigational ability. We work with maps as well. In new areas, I try to do extend familiar ground rather than introduce entirely new routes.
3. He is not strongly motivated by the feelings or opinions of others. He feels some need to please selected persons, but this is a small fraction of the motivation felt by neurotypical children. This is a significant challenge.
4. He doesn't like to see his siblings, or even strangers, upset. He can be quite sympathetic. This seems contradictory to #3, but if the upsetting force is him he's more likely to be agitated than sympathetic. Similarly his family is extremely important to him, but that doesn't necessarily change his behaviors.
5. He is motivated by near term rewards where the rewards are experiences he likes (treats, computer time, his movie pick, etc).
6. He is not motivated by money. Money tends to bother him, he feels compelled to spend it immediately.
7. He very often feels aggrieved and badly done by in comparison to his siblings. He doesn't easily translate relatively privilege limitations or time outs to his actions. This seems partly a cause and effect problem.
8. He is currently unable to understand the concepts of "trust" and "reputation". He does not understand that people will predict his likely future actions based on his past actions. This is a significant challenge but I think he can learn this. It is an educational focus.

The more I can model his mind, the better I can discover levers that can change his behavior. So I keep testing my model, and refining it.