Wednesday, February 29, 2012

Gates Foundation Shared Learning Collaborative - a special education angle?

I came across the Shared Learning Collaborative ( while attending a conference in Silicon Valley. It's a Gates Foundation funded initiative to enhance American education by providing an open source framework for disseminating and evaluating educational interventions.

The conference was on analytics, so there the SLC representatives emphasized the process of gathering (anonymized) data on learners and interventions, with the goal of matching student traits to a large repository of traits and outcomes [2]. In the ideal world, the system provides a personalized education program. The vision reminded me of the training module in Neal Stephenson's The Diamond Age.

They're not thinking about special education, but of course when I hear "personalized learning strategies" the connection is painfully obvious. Whatever is developed for 'the bottom 10%' [1] is likely to overlap significantly with what our learners need. I'm particularly interested in lifelong learning and training for special education teens and adults; when you're fighting for every bit of freedom that's possible lifelong education takes on new meaning.

The SLC is in early startup phase. Normally I wouldn't track them at this point, but Gates Foundation money is a significant asset. I signed up to be notified of progress. The site doesn't mention this, but they have a twitter feed @slcedu.

[1] I suppose they could also be focusing on the top 10% who will work for Silicon Valley, but it's pretty clear that the Foundations interest is the bottom 30% of the student population -- the group that, as adults, will be shut out of the world economy. That group overlaps with our population.
[2] The same vision that has been a part of electronic health records since the 1970s.

Wednesday, February 01, 2012

Autism redefined - DSM 5 and the services dilemma

I've claimed frequently over the past six years that the diagnostic term "autism" is virtually meaningless. That doesn't mean this is entirely a good idea ...

New Definition of Autism May Exclude Many, Study Suggests - Benedict Carey -

Proposed changes in the definition of autism would sharply reduce the skyrocketing rate at which the disorder is diagnosed and might make it harder for many people who would no longer meet the criteria to get health, educational and social services, a new analysis suggests...

... The definition is now being reassessed by an expert panel appointed by the American Psychiatric Association, which is completing work on the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders, the first major revision in 17 years. The D.S.M., as the manual is known, is the standard reference for mental disorders, driving research, treatment and insurance decisions. Most experts expect that the new manual will narrow the criteria for autism; the question is how sharply...

... Under the current criteria, a person can qualify for the diagnosis by exhibiting 6 or more of 12 behaviors; under the proposed definition, the person would have to exhibit 3 deficits in social interaction and communication and at least 2 repetitive behaviors, a much narrower menu...

Obviously, I agree with the DSM authors that the current definition of "autism" is not particularly useful. On the other hand, it's tied by law and legislation to a wide range of services and protections. So we need to be very careful about we replace it with. This is particularly important during our current era of slow economic growth, capture of that feeble growth by the most wealth Americans, and a rapidly aging population. There are ever more legitimate and powerful competitors for special needs funds; reclassification will be embraced as a big money saving opportunity.

To be sure, the fundamental problem is that "autism" gets special treatment over other brain disorders (ex: schizophrenia). There's no logical reason why this should be true, or why children in some school districts with "learning disabilities" get support while children with low IQ don't. That's why nobody has "mental retardation" any more; why assign a meaningless diagnosis when another equally meaningless diagnosis provides better services? For us doctors, that's a "no brainer".

We need to fix that problem, but it's not going to disappear. So any reclassification better have big returns. A new classification has to have a big impact on research, treatment, prognostic accuracy or management. This refactoring of the DSM classification doesn't promise much of anything -- except cost savings.

If there isn't a big impact, then we might as well flip the problem around, and redefine "autism" as "cognitive disability, cause unknown". That way we keep the legal protections and services associated with the word "autism", we expand those services to cover everyone who needs them, and we start with an intellectually honest classification that promises nothing and delivers nothing.

Then we start afresh - and begin to classify brain dysfunction based on pathophysiology and objective assessments.

See also:

Advice for Aspies who hate to lose

#2 (aspie) says he hates competition.

That's not precisely true. He loves to win. The problem is, he hates to lose. He really hates to lose. [1]

Tonight that meant he was stressing big time about a spelling bee.

We talked it through. I suggested he turn the problem around. He's not competing to win, he's competing to get through the experience. He's competing with his own disability. Doesn't matter if he cries or not, just that he gets through it. One day, maybe, he'll learn to lose gracefully. Then he'll be able to compete.

He did well with that.

[1] This is a big contrast to #1 (autism, adhd, etc). #1 likes to win, but he doesn't mind losing. That's why he can be a baseball pitcher -- something I could never imagine doing. I was a lot more like #2.