Happy! Because of IMFAR & Despite Trial By Fire (Yes, Literally)

Image: Selfie of me & Leo. We are a pale-
skinned, dark-eyed duo. His hair is curly &
brown, mine is short & red.

April's autism awareness/acceptance marathon wore me out, as it does most people involved in autism-centric advocacy. Plus the International Meeting for Autism Research (IMFAR) came right on April's heels, and also wore me out. In a (mostly) worthwhile way. And all by choice.

But, both sappily & sincerely, any fatigue vaporizes when I spend my first day home from IMFAR driving around with Leo, and he turns to me with a big smile and declares, "Happy!"

Dude, me too. I'm glad to be back with you and back to our regularly scheduled program. I'm glad that your AAC trial period was a success. I'm glad that the pool is now lovely and warm and swim-ready and we've entered the insta-bliss period of the year.

(...and I'm glad you and your sisters were deeply asleep the night after I got home from IMFAR and woke at 4:30 AM to the smell of smoke. I thought perhaps you or your sisters had decided to experiment with matches or candles (scary but it happens), but quickly realized you were all asleep. Then I followed the smell out the front door, looked across the street -- and saw a wall of flame and smoke, complete with extra-loud crackling campfire noises. I am glad you all stayed asleep while I called 911 and your dad ran across the street to discover that the fire was actually the front patio furniture and built-in benches [BBQ mishap] and that the residents were all OK if, initially, deeply asleep. You might have enjoyed watching him put out most of the fire by himself until the residents and then firefighters pitched in. And I hope you were listening later on when I lectured you about fire safety and keeping the damn long dry grass cut short -- wildfire safety is no joke in these hills, especially not during this super-dry season. We are all spectacularly lucky the entire neighborhood didn't go up. I think I'll continue sleeping with at least one window open until we get some rain.)

But back to IMFAR. Carol Greenburg and I provided live coverage on Thinking Person's Guide to Autism Twitter and Facebook, and you can do a keyword search of the abstracts to see what researchers were presenting. I was pleasantly surprised by conference's progress in terms of minimized pseudoscience (Arthur "scope 'em" Krigsman's "autism is GI immunoinflammawhatzit" poster was a quackery holdout, and was adjacent to an NIH/Hopkins poster stating that immunological abnormalities in autistic kids were "unrelated to autistic symptomatology"). Another surprise: The emphasis, front-and-center acknowlegment that autistic people grow up and age, and that perhaps we need a whole hell of a lot more research into what autistic people who are not kids need?

Image: A swirling, blurry multi-colored carpet
seen from overhead, with a leg & shoe
coming in from the right.

IMFAR as an four day immersive experience was of course very very overwhelming, with all the info and social firehosings. My brain is still rebooting. I found this photo of the conference hotel carpet on my phone amidst the other IMFAR pics -- and, yeah, that's what it felt like. Especially since my computer's trackpad gave out, giving me a 35% chance of being able to click on objects at any time, coupled with flashing and dancing screens, and constant attempts to auto-define words anywhere near my cursor. Really fun, that, especially during live-tweet sessions. (Perhaps Stephen Shore, who was sorely missed this year, could use a similar experience as one of his sensory/disability simulations.) The real-world effects of my computer still being f'd up is that my IMFAR reporting is coming out in trickle rather than traditional firehose mode. But it's coming, so stay tuned.

Thankfully I was able to focus my mindpowers and force my computer to mostly cooperate during the SFARI-hosted IMFARchat TweetChat, during which science communicators, reporters, and autism org reps chatted about autism science & research topics & priorities. And we met so, so many wonderful people during IMFAR and learned, so, so many wonderful things. Carol and I also stayed with my wonderful best friend from high school and ate wonderful food and saw wonderful whale sharks. I am glad I went.

Video description: Whale Sharks! In an Aquarium! With people walking around underneath them!

That gladness was not confined to The Peach State: IMFAR inspired me to take immediate advocacy action in the real world. Right before I left for Atlanta, Leo needed a blood draw. He doesn't like them, but he's usually a sport. His phlebotomist was not; despite my attempts to advise about Leo's needs and concerns and to please not objectify my son, that phlebotomist was vocally less than respectful about Leo in front of Leo. And here's where I will admit to one of my personal failings: I shrink from confronting hostile people IRL. Especially when Leo needs all of my attention, and is extremely distressed. Which means, furious as I was, the phlebotomist got no blowback from me beyond WTF face.

Image: Academic Presentation Poster: "Autism Comes to the
Hospital: Perspectives of Child Life Specialists."
Blue bar on top, three columns of text paragraphs
superimposed on a gray caduceus.

I ruminated and fretted about the incident and my being a goddamn wimp throughout IMFAR. Until I came across the IMFAR poster Autism Comes to the Hospital: Perspectives of Child Life Specialists, which describes tools and strategies for helping de-stress autistic kids in medical situations, and emphasizes the need to train medical staff about autistic needs. So when I got home, I contacted Leo's medical office, let them know who the offender was, let them know what had happened -- and sent them the poster abstract so they could start working on making autism-accommodating tool kits of their own. They took my concerns very seriously and are talking with the phlebotomist.

Just so glad to be home. (And that I had a home to come back to.)