So I wrote and rewrote a whole column for this week. And then I scrapped it.
Around midnight, what it was that I really wanted to write about came to me. I got into bed and noticed the book The Reason I Jump beside the bed. I’ve read this book, have given it to others and recommended it to many. Like many people who have reviewed the book online, I found it beautiful, interesting and fascinating to read.
But unlike many of those same reviewers, I didn’t find it particularly helpful.
It didn’t help me understand the reason Georgia barks, repeats the same questions for years or needs help in the very specific ways that she does. Many web reviewers talk about how helpful the book is, in the same way one might talk about a guidebook for a foreign city or a legend on a particularly complex map.
But I simply was unable to take the things I learned about Naoki Higashida and apply them to Georgia. A few things struck me as I read the book, but they were more like a familiar scent twigging a vague memory than a concrete comparison to Georgia’s behaviours.
For anyone who hasn’t yet read the book, it is a translation of the thoughts of a then-nonverbal middle school boy with severe autism. Nagoki Higashida spelled them out, literally and painstakingly through the use of an alphabet grid, in order to answer the questions people most frequently had about his behaviours. Higashida’s ideas are translated by KA Yoshida, who’s married to David Mitchell, the author of Cloud Atlas and the foreword to The Reason I Jump.
Many people have referred to the book as an ‘opening up’ or ‘accessing’ of autism, and while that’s great in spirit, I worry about that claim for two reasons. First, it dilutes the pure value of the narrative in the book. The prose is beautiful, sad and challenging. To say that it fulfills some kind of generic purpose – to help the rest of us ‘understand’ autism – is really giving it far less value than the text deserves. Second, it assumes that all one needs is a kind of guidebook for autism and voilà, all those people with autism are all figured out.
I suspect that a travel guide for Italy won’t help you in the mountains of Nepal just as one account of autism can’t possibly help you understand ‘what it’s like’ to have autism. One single guidebook for autism will only ever give you insight into one single person’s experience.
When Georgia was smaller, she was not what you’d call ‘purposefully verbal.’ In other words, she said a lot of stuff but it wasn’t tied to a purpose, like getting what she wanted or communicating something in a determined way. She’d be outside on a beautiful day and look around at the trees and say, “Bells.” She would enter a room, look at the ceiling and say, “Stove”.
I spent hours and days, scratching my head and trying to figure her out. Bells, bells, bells. Stove, stove, stove. I’d rack my brain trying to think what it might mean. I’d ask her simple questions, show her pictures of stoves, take her into the kitchen and talk about cooking and heat and appliances.
She was, for many years, a true mystery to me. For two or three years she spent her days being a ‘mellow’ baby, but would sometimes wake up at night, screaming and inconsolable. I’d be awake with her for hours, doing everything I could think of, to calm the child who could not be soothed. She wasn’t sick or hungry or feverish. She didn’t seem scared or upset. But she cried and cried.
Over time, I labeled this behaviour. I decided that it must be frustration. I concluded that she was incredibly frustrated with not being able to communicate in order to get what she needed during the day, and the result was a build-up of frustration that came out in the middle of the night. So the next time she woke up screaming and crying, I reacted to what I was calling her frustration.
The label didn’t necessarily help me to stop her crying but it did help me to cope with the crying. I didn’t lose my patience as easily. I could find that place inside myself that was calm, even in the midst of my own fatigue and exasperation. It helped me to put a label that I could understand onto behaviours that I could not, for the life of me, figure out or make better in any appreciable way.
When she was older, she was enrolled for a few years in a wonderful private school for kids with autism and developmental disorders. The founder of the school, Simone, talked to me about the dangers of translating Georgia’s behaviours in order to make them understandable to me.
When she first talked to me about this, I remember feeling immediately defensive. While I may have appeared to be focused on what she was saying, I was doing that whole “uh huh…” thing inside my head. It was one of those moments (we’ve all had them) when you’re listening to someone whom you know, deep down, is 100% right, but you need to get all your inner talk done before you can really listen. That inner talk is the stuff you’ve been telling yourself for so long, and that you know isn’t correct – but, dammit, it makes you feel better to tell it to yourself. So there.
My inner talk was telling me that she was wrong and that I wasn’t translating Georgia’s behaviours into something else – I was ‘understanding’ Georgia! And I was the one who knew Georgia best. Even though I couldn’t ask Georgia to tell me what she was thinking, I knew her. I knew what she was feeling and I knew it best. There wasn’t anything but an accurate reflection of what she really felt. Uh huh. Cue eye roll at self.
At the time, Simone and I were talking about how Georgia would repeat the same question to me, over and over. I found this most difficult in the car, with just her eyes and baseball cap visible to me in the rear view mirror, repeating the same question. No form of distraction would work, nor could any radio station stop the questioning. Driving home after a long, tiring day of work, I would listen to the questioning begin and continue all the way home. If we were going somewhere different, the volume and speed of repetition would increase. It was a test of my patience.
I decided that this was anxiety. Anxiety about something: the trip, the car ride, the destination. When I talked to Simone, she gently warned me against labelling this as something with a specific quality or emotion. She suggested I just think about the questions as information, as Georgia’s attempt to engage in meaningful conversation. It was just information. The interaction was just conversation.
These were still labels on the behaviour, yes, but without the attempt to fit them into a construct I called anxiety orfrustration.
This was one of the most valuable but most difficult things to hear — and process, and try to remember. Rather than labelling her demand for an hour-by-hour schedule as agitation or worry, I need to remember that this was not something that necessarily required translation.
But the desire to translate Georgia’s behaviours into something comprehensible is still there. Her ever-improving communication skills mean that translations are less often necessary. “I’m sooooo mad!” and “I hate this too much!” are easy-to-understand statements, especially when accompanied by teenage posture and attitude. I’m thrilled she’s found a crystal clear way to voice her feelings and needs — even when it’s not what I want to hear. But she remains a complete enigma to me at times, and some days I’d love a guidebook to shepherd me through the mystery that is Georgia.
Sometimes the mystery that is Georgia is simply delightful.
I know now that when she used to look up into the trees and say “bells,” she was looking for wind chimes. I know now how much she loves that sound, and that she can spot the tiniest dollar store glass wind chimes hanging on a stranger’s porch as we drive. She points them out and smiles.
We have a backyard filled with wind chimes of all types: bamboo, shells, wood, and aluminum, chimes with spinning birds and tiny crystals, with wind gongs and eclectic shapes. On a warm summer afternoon, you’ll find her sitting on the swing, books spread around her, digging her toes into the grass to make the swing go and listening to the collection of wind chimes sounding softly in the warm breeze.
When we go outside for a walk, she’ll still look up into the trees or on a porch and say wistfully, “bells.” I know that she’s heard a tiny sound somewhere close by. When we both spot them, we smile at each other with something I’m pretty sure is just like understanding.