Monday, March 19, 2007

My Kind of Research


photo credit-Staci Peters

Lately my two selves have been somewhat at odds with each other-my science educated self and my parent self.

As a person trained in the scientific method and believing in things that I can test and measure, one of the first things I did when we got a diagnosis of autism for Buddy Boy was to immerse myself in reading as much research as I could get my hands on. If there were things out there that were proven to help, then I would find them and get that help for him.

One of the first things I discovered was that there was a bunch of new age, hocus pocus kind of stuff out there that had absolutely no science behind it. Sure, on an initial scan of some of the literature talking about causation and "cures" there were things that seemed to make some sense. But when I looked with a critical eye, looking for hard data, there was just no "there" there for most of this stuff.

My reading did seem to indicate that we had "missed the boat" by not instituting ABA therapy before the age of three (Buddy Boy was almost 4 when doctors stopped talking about sensory integration disorder, probable ADHD, and language delay and finally uttered the "A word"). I read up on ABA therapy anyway, and quickly realized that classic ABA therapy consisted of basically putting my kid into a Skinner Box, which I wasn't really too fond of (note: I know that all "ABA" isn't created equal, so don't all pounce on me if it's working for you).

The parent side of me has always wanted to protect my son, nurture him, instill a love of learning and an ethical base, then turn him loose on the world to do great things (what I'm sure we all want, basically). Upon getting a diagnosis, and as Buddy Boy's OCD behaviors and touchy temperment became more evident, the parent in me has wanted to put emphasis on getting the best supports educationally and socially that I can for my son, so that he has the best chance of living independently and being a productive member of society.

I have thus become much less enamored with research, especially into causation. Forget population statistics, genetics, and the environment. I have an "n" of 1 to take care of. If something isn't directly helpful to us in caring of our son, then it's a lot less interesting to me. Sure, I still follow all types of research when I come across it, but following most research has become a side issue rather than the main event.

So it was with some interest that I read this announcement from researchers at Georgetown University.

Using advanced brain imaging techniques, researchers at Georgetown University Medical Center have watched how humans use both lower and higher brain processes to learn novel tasks, an advance they say may help speed up the teaching of new skills as well as offer strategies to retrain people with perceptual deficits due to autism. ...


Rather than being aimed at isolating 100's of genes that contribute to autism (important stuff, just not too helpful in the here and now for me), they looked at something that is going to be important to Buddy Boy for the rest of his life, learning.

...In the March 15 issue of Neuron, the research team provides the first human evidence for a two-stage model of how a person learns to place objects into categories discerning, for example, that a green apple, and not a green tennis ball, belongs to "food." They describe it as a complex interplay between neurons that process stimulus shape ("bottom-up") and more sophisticated brain areas that discriminate between these shapes to categorize and "label" that information ("top-down"). ...


I've always thought that Buddy Boy's inability to remember the names of any of his classmates (with a couple of notable exceptions) was at least partly due to the way his brain filed away peoples' faces. If these researchers can shed some light on how we file away things in our memory, then concrete methods at assisting those with trouble with these pathways could be designed.

These kinds of studies are, to me, the kinds of studies that will shed some light on what specific kinds of supports are the most helpful in preparing my son to live independently. And that's a great thing, no matter how you slice it.

Joe is 210

6 comments:

Joeymom said...

Oh my goodness, someone is out there doing something USEFUL?

We just came back from looking at another hippie place today. It is stunning how many folks want $3000-$5000 dollars to "cure" a kid. Flat fee, just get out the checkbook and it will be all better. Scary how many folks must do it, too.

David N. Andrews MEd (Distinction) said...

There's many of us out here trying to do something useful (I posted about my own research in a comfortable Yahoo group recently, and someone was amazed that the result of it was something beneficial to the person being studied).

That 'cure' thing is very scary...

Lisa/Jedi said...

We have been finding some of the recent research to be of practical use, too. At an autism conference that my husband attended last fall, they presented a couple of papers that changed how we're doing things with Brendan. One showed that even the keyboard interface is not optimum for some kids with AS, which we've been finding true for Brendan, & are getting ready for him to start to use voice-recognition software instead. Another paper looked at how kids with AS visually track when in a classroom setting & discovered that the more gesturing the teacher makes, the less info they take in. We made his teacher aware of this, & she has experimanted with where his desk is placed in the room to optimise his ability to concentrate. Pretty cool stuff...

Club 166 said...

It's always cool when you come across something that's really useful.

I also hope that the "bad karma fairy" visits all of those that prey on desparate parents just looking for some help.

kristina said...

That fairy would be rather busy then.....

VAB said...

I certainly know what you mean about how lacking in meaning a lot of arbitrarily chosen measures can be. Our SLP recently said that the problem is that testers decide in advance what skills they are going to be tested and, no matter what happens during the test, they keep testing those skills. But neurologically diverse kids often have very narrow areas where they are very strong and use those areas to compensate for other areas where they are weak. If the test misses that area of strength, not only will it not accurately represent what the kid is capable of in the overall, you also miss out on incredibly valuable data in terms of designing an educational program. She believes in interactive testing in which, when a tester finds a strength and a weakness, they switch to a subtest that focuses on the strength. In traditional testing, you just stop when you find the weakness. That results in very flat results. Interactive testing apparently results in spikier results, which means more data to work with.

I also think it would be useful if testers asked parents and teachers, "What can this kids do?" and then set about trying to find out what the kid is using to do it. An evaluation that explains why a kid can do what they can in fact do is much more useful than an evaluation that only accounts for what they cannot do.

As parents, I guess we can look at these crude black and white results as process of elimination data. If our kids aren't doing what they do because of X, Y and Z processing capacities which are what NT kids rely on, then it must be something else. There are, thanks to the testing, that many less trees to be barked up.

And it may not even be that our kids are doing well because of some particular splinter competence. It can also be a sum-is-greater-than-the-parts thing, as you mention. My understanding is that, in ASD kids, integration of competences is more likely to be a weakness than a strength. So if integration is, in fact, working as a strength, we would definitely want to find out how that came about and how we can encourage development of more of the same.

You are right to feel that, while there are some pictures that can be drawn perfectly well in back and white, there are others than can only be represented in shades of gray.