As an interesting aside, I got a call yesterday from the director of a study (who had evaluated her at 24 months) wanting to see our daughter’s developmental screenings from 6 and 12 months as part of an effort to identify early signs of autism. I hope as time goes on, we can identify these kids earlier and earlier. Again, here EI eligibility starts at birth … can you imagine what progress could be made if a child was identified at 6 months of age and therapies started at that point?

The list of members in the Neurodevelopmental Disorders Work Group is indeed impressive. What struck me most was that we both live autism day-to-day, but their lives couldn’t be more different than mine! Yet both essential!

A big, obvious question is how to address these as children get older. I don’t feel remotely smart enough to answer that. Perhaps when we read their draft in a couple of months we’ll be able to better see the implications of their proposal in our everyday lives.

Before I forget, the DSM working groups cover all sorts of disciplines and specialities, and neurological disorders are well represented by their respective experts. You can see the list of members of the Neurodevelopmental Disorders Work Group responsible for this effort. Several of the names don’t ring a bell to me – which doesn’t mean a thing about their qualifications – but a few I’ve heard of. Dr. Volkmar wrote this enormous, comprehensive book – A Practical Guide to Autism – which is about the size of a good phone book. I bought it a couple of weeks ago, and it might take a year to digest even half of it. I recommend going to that page and reviewing their credentials. I did today for the first time and found it very informative. I left feeling quite impressed with that group.

Early Intervention – at least in our experience – seems to have a relatively low threshold to entry into the program, especially when compared to the school systems. Admittedly, the J-Man had so many qualifying issues that it may have seemed like an easy threshold to us.

As the age of autism diagnosis steadily gets younger, this is perhaps going to create some interesting issues with EI. I think EI eligibility starts at 18 months of age pretty much everywhere in the U.S. That was about 2 1/2 years ago for us, and just that recently, ages of autism diagnosis seemed to be rarely younger than 2.5 years old, at least according to the evaluators we worked with. However, it’s been pretty steadily heading toward that 18-months-old range in some cases since then. I’ve been wondering whether an autism evaluation will come as part of determining EI eligibility rather than doing it well into EI like we did.

Anyway, there’s the added level of complication with the schools in that eligibility for school services is defined under IDEA, which may or may not jibe with what’s in the DSM. Autism is a recognized disability under IDEA. In some nebulous part within the zone of PDD-NOS seems to be the current boundary between eligibility and not. I really feel for parents in many school districts trying to navigate IEPs with a PDD-NOS diagnosis. In some places, it’s no big deal; in others, it’s like clawing for every inch. I agree that ‘PDD-NOS’ turning into ‘autism’ could really solve a lot of those problems.

I just found out that IDEA is up for renewal in Congress next year. That makes me breathe hard just thinking about it. The two big issues will be whether the funding is going to be there and whether the definitions of disabilities and the educational requirements will remain at least as strong as they are now. Funding is going to be a war until the economy improves. That hurts my brain to ponder right now. I’ll deal with that tomorrow.

One interesting point, from my perspective of a toddler diagnosed within the last four months, is that her neurologist already diagnosed her as “on the spectrum” as opposed to having one specific label. [Admittedly, the paperwork does state PDD-NOS, which is what qualified us for Early Intervention.] His partner is big into the politics of Autism and they are already choosing to diagnose only as “on the spectrum” as oppose to one subset of the ASDs. Especially the kids that are caught early, as it will evolve as they mature. That leads me to believe that the overall trend will be towards a general spectrum diagnosis instead of a specific label.

Perhaps most important will be to put funding behind services for kids on the spectrum. When EI and school districts can have the appropriate financial resources to give these kids the interventions they need, then hopefully parents won’t have to be fighting quite as hard. I have to believe that it is in the best interest of all educational entities – EI and school districts being the obvious two – to give these kids as much support as they need to be successful. And the only reason that I can think of for them NOT to do that is lack of funds.