“Ignite” talks are presentations composed of 15 slides that automatically rotate every 20 seconds, meaning they’re only 5 minutes long.

Since I’ve been working on a similarly sized presentation to introduce my ideas on a comprehensive ASD curriculum planning & tracking tool, and since March 1-4 is Global Ignite Week, I wondered whether there are others in our community who would like to present a short presentation in this style.

There’s certainly more that can be done, but perhaps some focus might be an interesting way to get ideas on the table and excite each other about what we’re thinking in the background.

Please leave a comment if you’re interested in presenting or helping organize such an event. If there are only a few of us, perhaps we’ll piggyback on some NYC events that same week.

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“Stealing” money from special education?

by Rick Colosimo on January 11, 2010

This article on the siphoning of stimulus funds for special education to general education is one of the few I’ve seen in the WSJ on special education. By itself, I think that’s a major achievement — it means that special education and the plight of students and the often under-funded special education departments is getting more attention.

My fear is that even good people, friends and relatives, colleagues and classmates, will see this as a good idea, as a way to protect general education kids. My fear is that they won’t think about the tremendous needs of so many of our children, not just those on the spectrum but also those with other developmental disabilities, those who are deaf and blind, those with dramatic medical problems.

This isn’t “budget realignment;” this isn’t “creative accounting:” this is stealing the future from these kids. If our “educators” do this indirectly now, how long until they do it directly? Is it just a matter of time?

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When research isn’t science

by Rick Colosimo on November 27, 2009

Some time ago, a link to this quasi-review article crossed my desk. Briefly, it explains why, in the author’s opinion, the subject articles on genetic research in autism are somehow untrustworthy or flawed.

In some ways, it’s well-written. I like the bibliography. It’s all Nature, Science, NEJM, and Nature Genetics.

But to me, the real story is what’s not on the page. It’s too bad the author didn’t cite leaky gut papers from those journals or anything related to his “environmental” arguments/theories/guesses. That’s the real story – he can complain about these genetic studies because they’re published and methods are revealed and all the rest is an open book — including funding sources, conflicts of interest, and even access to many of the underlying samples. In some cases, the journals themselves require researchers to share all their data even if the lab wants to keep some of it private so they can look for more publishable findings.

Anecdotal evidence isn’t. Much of what is passed off to parents as “research” or “science” or “medicine” is so opaque or poorly structured that no one writes about it critically. It’s not deserving of criticism, and the practitioners who operate in this way don’t really complain about being shut out of mainstream scientific discourse. They haven’t even ante’d up the price of admission to the discussion.

I asked a research scientist once about whether there was any point to telling these other doctors and “researchers” (and I feel compelled to put it in quotes) about what constitutes a reviewable study. The response: all they have to do is read the journals and they can see what types of studies get published in terms of study design, replication, confirmatory evidence, and disclosures about ancillary matters (conflicts of interest and funding).

When you think about it like that, you see that the real reason the “alternative” and “biomedical” research is ignored or rejected is that it just doesn’t get presented in a way that looks like what society has spent hundreds of years refining as science and the scientific method.

Yes, it’s true that this post is aimed at discussions about the science of autism. But the same issues are there when it comes time to select specific interventions for remediating reading problems for children with learning disabilities. Some things work, and some don’t. If there isn’t research supporting the use of a particular intervention in the circumstance that a specific child presents (not just children in general or dyslexics or “most” autistic children) and if another reasonable intervention isn’t identified, then good advocacy demands that an IEP include a process for determining whether progress is being made and whether that progress is satisfactory.

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Comprehensive medical record planning

November 2, 2009

This article on the VA’s electronic records experience should be energizing autism service providers around the country, but I fear that it isn’t.
The doctors involved have their own electronic records issues, and they’re almost certainly uncomfortable with anything that could make them responsible for inappropriate disclosures of information to non-medical providers, HIPAA releases notwithstanding.
The private [...]

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Planning for your first IEP

October 30, 2009

What advice do you need to help you think about your child’s first IEP? This guide gives you some principles and tips to help you think about how to plan for your first IEP.

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