Learning About Autism: Becoming My Own Expert


A miserable winter holiday sent me on a journey of self-discovery. Snowed in the house, Tyoma, E and I chafed against each other. We three were sick, bored and joyless. Happy Frickin’ Holidays. Complaining about spending time with your loved ones is awful, but this was a drudgery so deep that I became convinced something terrible was wrong with our entire family.

What to do?

I decided, no more Wretched Winter Holidays (or daycare for Tyoma). In January, we hired another respite worker (number three), to give us some breathing space on the weekends without having to import a relative. We would find a better path.

February vacation week came quickly. Nine days of Tyoma at home all day with no daycare loomed. Without a clear plan, I fretted over the break for weeks. Ultimately, Tyoma can’t change, but maybe I could change. We could have fun like we used to.

Thus, I planned a massive documentation frenzy. Every detail would be recorded. A specialist outside the school system had to exist. With facts and figures, I could present them to said professional and say, “look at this.” The specialist, awed by my spectacular effort, clarity, and organization, would cry, “Aha!” and delineate an effective coping plan without speech or play therapists. Problem solved. Happiness achieved.

Tyoma’s history since his autism diagnosis required assembly. I had information—masses of papers, documents, and handwritten notebooks. Although I kept most of the paperwork together, it was only sporadically organized. A few hours of work and my collection took shape nicely. It felt so satisfying to punch holes, label, and bind. I love rows of nicely organized notebooks! Life was already looking up!

My next step brought me back to LiveJournal. Here, I’d publish my accumulated data. Maybe I could help somebody feeling lost. The act of typing helps me assimilate information. I could have new insight and not even need a specialist! Woo! More optimism!

February break came and went. I kept detailed notes. Two things came out of this. First, being with T was entertaining when I had something to do as he took “organization” breaks (he likes me to sit with him and talk to himself). Part of the problem is my own boredom!  Second, without hubby around, both Tyoma and I were less distracted and the days floated by. I continued my blogging project with zest, and even switched to a more modern platform, despite needing to paste it in entry by entry.

"Here, darling, let's tumble that autism right out of you!!!"
“Don’t be frightened, darling! We’ll tumble that wicked autism right out of you! Plus your brain will be April fresh!!”

The empty days in my long-neglected LiveJournal, told a story in themselves.  I journaled halfheartedly after Tyoma was diagnosed in 2009; writing seemed frivolous compared to my need to understand him. Self-exploration could wait. My world became the world of autism therapy. I investigated prominent buzzwords: ABA, RDI, Floortime, sensory integration. Books were bought, read, and re-read. I surfed the internet and marveled at the ridiculousness of the autism treatments: chelation, hyperbaric oxygen therapy, and sinister nutritional supplements. Regardless of epoch, certain shady souls would gladly sell you any fantastic (or fatal) potion.

Cartesian doubt fell upon me. Does anyone really understand autism? The metaphor of autism as a puzzle seems apt, yet the puzzle is not a person who has autism. The puzzle is sorting out the theories, information, and treatments touted by those who build careers around autistics.  I must become my own specialist. Self-reflection just might become important again. Optimism squared.

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