Becoming a “Positive Deviant” for Autism
(Continued from Fighting Complacency – Part 1)
How in the world do we beat our son’s Autism?
I have no idea.
I have no f*cking idea.
But, if others have, why not my son?
I was (just) putting in place the standard systems and processes that I’ve been told (and have no reason to doubt) are “best practices” for kid’s with autism.
It is a fascinating book.
Near the end, he talks about “The Bell Curve” – how performance of large groups following similar processes are expected to be distributed over a bell curve – with most of the results clustered around the average.
But there are outliers.
Both good and bad.
… so, what is the difference?
Dr. Gawande had a section in the “Bell Curve” chapter on “Positive Deviants” – the statistical outliers doing much better than average.
The case study used was Cystic Fibrosis. And the improvements in its treatment.
It was compelling.
If you think about Bell curves, you expect the outliers to be doing the same thing as everybody else, they just happen to get better results… statistics, random distributions…you know, math.
But that isn’t the case at all for Cystic Fibrosis.
The best performers blow away everyone else.
And they do it year after year. It doesn’t change from year to year as you would expect from random results.
Because they don’t follow “Best Practices”.
They have “KICK A** PRACTICES”.
Instead of “doing what the guidelines say”, they fight each and every symptom of Cystic Fibrosis constantly:
- They target 100 percent + of lung capacity for their patients and work to make sure that happens.
- They’ll insert a feeding tube to make sure that the patients get enough food if their weight is below normal.
- They deeply interview each patient to make sure they really understand what is going on…what is working and what isn’t.
- They watch deeply for any changes and JUMP on them if things start slipping.
- They’ll make up new therapies or raise the level of therapy … anything to get MORE AND BETTER RESULTS.
- They consider “Best Practices” a look back at history – a floor of minimal therapy, not a target for their patients.
.. and, as a result, their patients live longer than average.
Much, much longer.
Their oldest patient (as of the year the book came out, was 67 – while the average life expectancy for Cystic Fibrosis was 33)!
33 years !!!!!!!!
I want that for my son’s battle with Autism.
I want to find a way to go beyond “Autism Best Practices”.
I can’t really ask the school or healthcare provider to do this, however. The systems aren’t set up that way… and I’m not ready to go there … yet.
There is a lot we can do, but we’re going to start modestly.
Because we don’t know what we are doing.
We’re putting together a Home IEP (definitely need a better name)… my wife’s great idea.
So, here is the draft:
Our Home IEP (Version 0.1 – February 2016)
The big goal – move our son as quickly as possible to at least “age typical” expressed state – “lose the diagnosis”. We may never get there, but that is our goal.
Crazy goal – get our son to be “Most popular” kid is school! (this is truly crazy as neither my wife nor I were really “popular”).
1. Improved socialization – Go to a park on non-rainy days/non-major activity days. Target 5 days in 7.
Main parent – Me on weekdays. Go to a park and give our son as much chance to be near other kids to observe and play. Hopefully, he’ll start playing with other kids at some point, but the only way to get better at being social is to have increased social opportunities.
This is on me. It is really easy when the kids get home from school to sit down, relax, turn on the TV… or just have the kids play around the house.
2. Improved socialization – Play-dates with family friends. Target – twice a month?
Main parent – My wife. Talk to friends about getting together more regularly with kids of near ages to both of our children (especially our son) to get increased chances for casual peer play and other kid play. If we don’t think this is enough, reach out and cultivate other options (contacts at both schools, our local school, Meetup?)???
My son “high five-d” another child spontaneously yesterday for the first time. As he really doesn’t interact with other kids, this was a big step.
How do we cultivate this????
3. Improved socialization – other?
Main parent – both. Find other opportunities for increased peer age and other children activities for our son???? How much do we think we can do?
4. “Peripheral auditory response” – how do we get our son to respond to his name and other peripheral sounds?
(The single biggest symptom that other’s might observe that is not-typical for our son is that he is totally unresponsive to his name. Call his name, and he doesn’t turn his head. It is so bad that before we had the autism diagnosis, we thought he might have some level of deafness)
Main parent – both. “Marco Polo” and other games or something suitable for getting response to his name and other sounds that are not in his immediate focus.
5. Verbs – how do we get them into our son’s vocabulary?
Main parent – both. Books? I found those flash cards for speech therapy?
(This is a weird thing. If you look at kid’s books and materials, they have tons of “nouns”, but not a lot of verbs. Our son is good at labeling things, but not at expressing more complex ideas – basically, we have a lot of one-word sentences with him… it is a real communication challenge.)
6. Other stuff?
Main parent – both. What other things do we want to take on and when?