When Helping Shows FASD is Complicated
Life is complicated with its if’s and and’s and but’s. It’s alright to be crazy, just don’t let it drive you nuts…
Back in 2007, I discovered that the Wikipedia entries for FAS and FASD were sparse, meandering, and in need of updates (check out this older version for comparison). Anyone is allowed, even encouraged, to edit Wikipedia, so I set about helping reorganize it according to history, diagnostics, and interventions, plus update it with more current terms research.
Boy, helping out showed me that FASD is complicated!
You can look up the history of edits (my username was MLHarris), and I was pretty proud of the changes based on my experience, observations, training, and research reviews. The article had improved so much, in fact, that one of the Wikipedia editors nominated and scheduled it as a Featured Article, which would have highlighted FASD to the broad audience of Wikipedia users.
Then it happened—Bam!
A senior/administrative editor halted the Featured Article status. She started re-editing the hours of work I had done, and she deleted so much, even proposing to delete the FASD article and leave only the FAS!
It Felt Like Everything I Had Done Was Wrong
It was all professional (you can read it in the “Talk History” of the article), but I felt like I was talking to someone who didn’t know or care about FASD and was only concerned about the “rules” of editing Wikipedia articles. So, I tried to learn the Wikipedia editing rules and fit all the information within their guidelines, but the rules were too complicated.
I gave up and moved on to other projects.
Then last March 2013, I downloaded a free iPad app from Starbucks called Wikiweb, a reader that visualizes the connections among Wikipedia articles. It made me remember those FASD articles, so I entered Fetal Alcohol Spectrum Disorder to see what would happen.
This is what popped up: (Click it for a readable version)
The FASD article is in the very center (bright green), and all the spokes out lead to articles it references (in olive). There’s only a few second tier connections showing (in brown), because activating more made the pictograph too jumbled to read.
That’s a lot of connections, and it shows FASD is complicated in a major way!
Then it occurred to me: That’s how FASD is in the real world… complicated.
I had a hard time writing about it inside the rules of Wikipedia and just gave up. But a person living with FASD can’t just give up. They live with a lot of connections and triggers we know and even more we don’t.
Folks with FASD exist in a world full of complicated rules (like Wikipedia!) and have to navigate through all that all the time.
It’s amazing to make it through a day without a meltdown (or only a few). It’s amazing to tolerate us when we lay blame for something that’s not their fault. It’s amazing to keep going and not give up. It’s something to be proud of and celebrated and supported.
It reminds me of my pal Morgan Fawcett, who explains it so well. I’m going to end with his video in which he talks about living with FASD. It’s a good reminder to me as a psychologist but also as a foster parent. FASD is complicated, but it’s also amazing.