Dreams of One True Autism Resource and Getting Beyond Oral History

Last night we had our more-or-less-once-a-month family night at school, which basically means many of the parents from the three levels of autism classes (Pre-K, K-2nd, 3rd-5th) get together at school either with the teachers or with outside experts from the community and discuss a particular issue that we’re all struggling with. Not surprisingly, the issue we choose to focus on for the month always fans out into a multitude of other things we’re dealing with.

These are always great evenings, both for learning so much from each other and for fellowship with other parents. It often connects us with some great resources in the community, too. For example, we’re meeting in a couple of weeks with the special needs trust attorney we connected with at a previous family night.

One major issue that dawned on me last night was that without these nights at school there’s so much valuable expertise and information we’d miss out on. The collective experience between the dozen or so families that regularly come to these, the teachers and therapists, and experts from the community who come speak to us is amazing. We get together in the room and share what we know, have learned from our own experience, or found out from our research. We are in a sense passing down an oral history of what we’ve learned to each member in our little tribe of great parents.

It’s a godsend that we can do this, but it’s also incredibly inefficient. We’re all the time reinventing the wheel. Someone goes through the process of filling out paperwork for disability services or getting a handicap placard or resubmitting claims to Medicaid, learns a lot, but that learning isn’t easily preserved. So the next person who goes through it may not know which of us to ask, tries to get some part of the way down the road themselves, gets as lost as the person before them did, gets frustrated, and so on. Eventually they’ll find a person who has already been through whatever the problem is (well, assuming someone has), talk to them, and start to get unstuck. But in the meantime, so much time and energy is lost – time and energy none of us have to spare. Facebook groups, listserves, forums, Twitter, blogs, etc. all have an equivalent problem – little of the information posted is preserved in a way that can easily be accessed later by the entire autism community.

But how do we preserve this knowledge? I’ve given serious thought to developing a wiki for our school. That would at least be a start. Obviously there’s information everywhere online, but that’s both a blessing and a curse. There’s so much information scattered everywhere, but it’s rarely that organized, often out-of-date, wrong, or perhaps even intentionally false, and quickly too overwhelming to do anything with. I don’t need eleventybillion pages of information about something; I just want someone to give me the freakin’ answer to my question.

I dream of a central repository of process knowledge, “How do I do X?” sorts of information and instruction sets. Yeah, I realize that a lot of our challenges aren’t easily reduced to instruction sets, but a number of things can be. For many other issues, at least people can generate a few, high-quality ideas to get people started or nudged a few more feet down the path. I know it’d be a monumental undertaking, but collectively we are wasting God knows how many billions of hours a year trying to find information we need about how to do everything from the simple to the complex.

Would it be possible just to have some resource that filters out all the roaring noise about vaccines, causes and cures, controversial treatments, and whatever else and just gives practical, day-to-day information we need like how to fill out this frackin’ form for disability services or what the hell all these acronyms mean? The end result of all of our yelling and infighting and carrying on is that this sort of resource does not exist because what energy we have left over after being parents is consumed by all this other stuff. And it’s great that we are spending so much time and effort on the critical work of educating the world about autism, but it’s also essential that we remember to educate each other on how to live and do the best for our children.

I know it’s unrealistic to expect one site to handle everything, but humor the ideal a little. Even the process of aiming toward that goal should yield something a bazillion times better than what we have now. I’d rather have potentially ridiculous and unrealistic goals than have all of us keep pounding our keyboards in frustration.

Anybody interested in talking about this further? It would obviously be an enormous undertaking requiring a whole lot of people, but there are more than a whole lot of us out there and I know we’re all tired of banging our heads against our computers trying to find what we need. Maybe one of the greatest gifts we can give each other is saved time. Together we are stronger than we are on our own.

Oral traditions eventually developed writing, libraries, and ways to communicate large quantities of information quickly. In a way, maybe that’s a roadmap for us, too. Perhaps we don’t even need a map. Maybe all we need is to just sit down and start writing and connecting the dots for each other.

Posts that hopefully are similar:

• Pointers and Tips on the IEP Process (Guest Post!)
• What’s Your Autistic Toddler Like Now? (Part 1)
• We’re All Afraid
• ‘Twas the Day Before the First Day of Preschool
• And Now We Will Hold You To It
• Living It
• What’s Your Autistic Toddler Like Now? (Part 2)

Tagged as: Features, Internet Resources, Perspective, Preschool, Reflections, School