Have you met IAN?

IAN is the Interactive Autism Network. It’s a data-gathering survey system, which asks parents or individuals with autism to provide as much statistical data as possible. You’re asked to give info all sorts of topics – in return, you get to be part of a surging community, where you can see what other families have done, what is scientifically valid, what has yet to be proven (or in my opinion, will never be proven). You also get invites to studies in your geographic area, and first looks at data-driven articles. The most recent one concerns diet interventions, specifically, what I have long suspected, that it is going to be difficult to enact a large Randomized Control study for dietary studies, but that it’s on the agenda for resolution.

The main page is www.ianproject.org  – yes, it’s supported by Autism Speaks. If you’re an autistic adult, please don’t let that put you off. Most of us parents don’t see our kids as a puzzle – it’s autism that we’re slowly putting the pieces together for, wanting to see our kids happy, see them live their lives to the fullest. It’s going to take lots of cooperation, and in the case of the IAN project, long hours of boring questionairre fulfillment on www.ianresearch.org . My critique of how IAN operates right now is this: it moves incredibly slowly. There is one question per frame. Most commercially driven survery sites contain a few at once, but additionally, they zip along at a high speed, because, frankly, our attention spans are short. For the IAN thing, these folks probably need to remember that we’re many of us overtired, strung out, and have not tons of free time.

Once you start the process, telling yourself all the while that it’s going to help everyone in the long run, you may fall asleep, but reawaken, and then take a break in www.iancommunity.org, where you can see all of the reports from the past few years, see height/weight data (comparing not only kids on the spectrum to their “NT” siblings, but more specifically between different types of ASD’s; ex.-  kids with an Autism or Asperger’s diagnosis appear to be taller both than unaffected siblings and kids with PDD/NOS), join the forums, but mostly see science in action.

Regardless of how you feel, or what you think about your family’s experience with autism, you should go and participate.