A is for ... acknowledgement?
A week into Autism Month (April to the unaffected), and I have typed, cut, pasted, and deleted, on a loop, as I’ve wrestled with what to say about the time of year my daughter and her peers – 1 in 59 and still estimating – are meant to take the spotlight. Nothing printable on April 1. On April 2, it is tempting to wade into the awareness-action-acceptance debate. Outpourings of love for people with autism alternate with calls for action on my social media feed, highlighting divisions within the community that remain, frustratingly, the same. Depending on your point of view, parents either don't love their children enough to accept them as they are, or parents are failing their children if they leave a single treatment stone unturned. Neither side is easily convinced by the other. The feeling that I'd be furthering an argument I can't possibly win leaves me still feeling blocked.
Tell a story, I whisper to myself. You’ve been gifted with a family that supplies plenty of material. The first week in April wears on, and finally thoughts take shape. A day in our life floats to the top.
It’s an early Friday morning in December, and Leah has a teenager’s dream ahead of her: A day and a night of uninterrupted time with her mother. I’ve assigned myself the task of ensuring that her ambulatory EEG – needed to make sure Leah’s brain remains seizure-free – goes the full 24 hours. She will spend that time within sight of me at all times.
This is attempt number two. The first one ended in about four hours, when Leah’s desire to shower on schedule overrode the order to stay dry and allow the equipment to do its work. If your kid has never walked up to you carrying a fistful of electrodes … well, you haven’t missed much, except for the aggravating realization that there is no way you’ll be able to stick them back on.
Which brings us to our second try. With shower times agreed upon, Leah reclines in an oversized leather chair, freshly washed and dressed for a pajama day. The same tech who prepared her for attempt number one patiently dots her scalp with electrodes and wraps her head in bandages. If she feels any irritation at having to address the same head twice, it doesn’t show. She makes Leah as comfortable anyone with a bouquet of wires attached to their scalp can be, chatting to her in the saccharine tones of a preschool teacher talking to one of her charges.
I swallow twin feelings of aggravation and guilt as I listen. Leah is 17. Underneath self-stims and limited pragmatic language lies age-appropriate comprehension. Talking about her within her hearing is always a bad idea. Talking down to her is worse; she is likely to ignore you until she decides it’s time to eat you for lunch. This woman has been unfailingly kind – something we’ve learned not to take for granted from providers – and is as invested as I am in bringing Leah’s EEG in for a successful landing. Hence, the aggravation-guilt cocktail that I am trying mightily to ignore as I focus on getting out of the office before Leah’s patience runs out.
Mixed emotions
April’s autism fanfare triggers a similar mixed bag of gratitude and angst in me. I can’t deny that my community’s ability to acknowledge autism has progressed since 2003, the year of Leah’s diagnosis. Maybe the blue lights and the widely circulated puzzle pieces have inspired more kindness too, and a greater awareness that compassion is a more effective tool than disdain.
Yet our world is still disappointingly far from true comprehension. What must it be like for Leah to be in her late teens and still be addressed as a small child? The contents of her iPad screen, never far from her reach at medical appointments, can be misleading. Most often, she rotates through YouTube videos of popular preschool shows, with occasional visits to Ariana Grande or, for a few interesting weeks, to a movie trailer for The Revenant. It may seem logical to connect dots from preschool taste to preschool-level cognition, but autism often defies expectations. Familiar, beloved characters provide comfort, ease anxiety, and give Leah a respite from a world that can be overwhelming. They are not the only indicators of what her brain can handle.I educated the EEG tech about exactly none of this, choosing instead to focus on the positives we encountered in that office. I was 24 hours away from knowing whether we’d need a third attempt and chose to endure, rather than risk bursting the goodwill bubble. If I could do it again, I might have thanked the tech and told her that Leah is happiest when addressed as a typical teen. Perhaps the next a-word to ponder is acknowledgement. As in, presumption of competence. Or an understanding that underneath exteriors that can be hard to fathom are unique individuals, who deserve above all to be known.