Autism Acceptance Month includes Light it Up Blue day, and people find themselves reminded, pummeled and delighted by blue lights everywhere. It’s hard to know how to feel about the hoopla when we try so hard not to let autism dominate our lives. That’s why I moved my autism posts to their own blog. To be honest, though, those were the posts that got the most hits when I began writing Lettershead back in 2009. Much as it would lovely to be vastly popular and widely read, Lettershead is about trying to keep some perspective and focus on ideas that are not directly informed by autism.
Autism casts a long, blue shadow, however. Sometimes it feels like I spent my early years escaping the shadow of alcoholism only to turn and face autism. It was good preparation, as it turns out. An anxious person by nature, living with an alcoholic taught me to be flexible and to live with a specific kind of uncertainty about what each day would bring. In recent years I discovered that if I replace the word “alcoholic” with “autistic” in the Al-Anon daily meditation book, it works beautifully, if not in exactly the same way.
The most dangerous thing I allow myself to do is look back and see the years in my between alcoholism and autism and idealize them. I think everyone indulges in this during a standard-issue mid-life re-evaluation. We see high school, college, single life, some point in our youth as something that slipped away accidentally rather than as part of a progression to a fuller life. George Bernard Shaw had it right: youth is wasted on the young. What I’ve come to appreciate by looking back is the value of the cumulativeness of my experiences. For all the randomness of my choices, they all seem to have prepared me for the life I have now, unexpected and unpredictable as it is.
Laurie Anderson said in a great interview with the New York Times that she has “zero time for nostalgia,” and that is a phrase I keep in my head because the world is changing so rapidly that I want our kids to know what the world used to be like without getting myself stuck there. In the process of talking about the past it also occurs to me that for all the good experiences we try to create for other people, we have no control over how they see or will remember it. I have no idea what my parents were thinking half of the time they were raising us, but it’s clear to me now that regardless of their intended blueprint, my own memories were built by me and there isn’t a lot they can do about it now. The reality of a large family is that there are as many versions of the truth as there are people. Our children haven’t even left home yet and they are already constructing versions of their childhood that bear little resemblance to the one I thought we gave them.
And autism? It is a changeable, petulant child all on its own. The disorder I learned about in 1998 is unrecognizable to me. I was not a refrigerator mother, my child’s brain is not empty, limited eye contact does not mean a lack of engagement, and we enjoy a level of love and empathy we were told was impossible. It morphs and changes along with the boy, advancing and receding on a schedule known to no one. It’s a cat, a bowl of Jell-O, a dish of mercury, a block of granite. I will follow it, chill it, contain it, haul it around, chip away at it – whatever it takes to deny it center stage. That’s the job, that’s my job, and every day it will change and still be the same. It’s not something I planned for, but I know it’s what I was meant to do.
After all of my hand wringing yesterday afternoon, perspective arrived in the evening. After a patchy, overcast weather all day, a thin stripe of sunshine lit the trees across the pond followed by a pink sky, promising a lovely day today.
And as I watched the full moon rise after the light faded, my boy mention as he passed me, “I planted a seed in your garden today.”
“Yes. I planted my nectarine pit in the garden so that it would grow into a tree.”
Never much of a gardener before, I began planting new things each September since 2001 as a way of reminding myself to appreciate where I am now and to invest hope in the coming spring. The result is a garden that gives me more joy than I ever imagined. This year’s bulbs sit in a box in the garage waiting to be planted, but it’s good to know something went into the ground on the 11th. Now, to figure out where he planted it and keep the chipmunks away from it.
Finally, we stumbled on the Science Channel’s Rising: Rebuilding Ground Zero and it was gratifying to see something emerging, at last, from the ashes of that day. No false reality TV drama, just stories and extraordinary images of the new buildings and the memorial and how they are being built. The series is several hours long and worth every minute. Thank you, Steven Spielberg.
Our boys play a game called cats versus dogs, and as you can see, one side of the room is mostly cats and the other dogs. The game involves a fight modeled on the battle scene in The first Chronicle of Narnia movie, The Lion the Witch and the Wardrobe. Devised by my older son with ASD, it involves charging horses and airborne animals colliding all over the place, accompanied by epic music and battle cries. If you look very closely, the animals and toys that are neither cats nor dogs are divided up (roughly) by good guys and bad guys – Captain Hook with the dogs, Peter Pan with the cats, etc. After the battles, we notice that cats and their friends always win, and the ensuing conversation goes something like this:
“When you play cats versus dogs, who wins?”
“They’re the heroes; dogs are villains.”
“Because dogs chase cats. Dogs are villains because they are too jumpy.”
“So the cats are good because they get chased by the dogs?”
“You’re a good kid, you always root for the underdog.”
“No – the undercat.”
“Thank you!” I said, not very politely. At which point another of my children said, “If I had called you a furious cow, you would have gotten really mad at me.” I agreed, adding, “But he got that from somewhere else, and on top of that he loves cows – the furious part is the insult, not the cow part.” Point taken.
Even though I shouldn’t be pleased that the autistic trait of drawing speech from movies and TV is so prevalent in our boy, I have to admit I get a kick out of it. When he was small, people at the local pool thought he was British because he drew so many of his phrases from the exceedingly polite Kipper cartoons: he would stand next to the diving board and pipe up, “You have a go!” Considering all the movie lines people throw around these days, it’s really not so undesirable – it’s a useful kind of shorthand. As he has grown and developed more of his own, original speech, his reliance on scripts appears most often when he is upset and words come less easily. Knowing that the phrases come from somewhere else takes some sting out of the confrontation and allows us all to laugh (most of the time). After the cow exchange we set about documenting the latest vocabulary of annoyance, and its sources:
- “Exactly WHEN did you go insane?” – Ice Age
- “I’m not interested in your excuses!” – Sir Topham Hatt, Thomas the Tank Engine
- “You’re a cowardly chicken, you really are.” – Porky Pig
- “You are shrewd, rude, mean and dangerous.” – Chicken Little
- “I hate you, rabbit.” – Yosemite Sam
- “Foom!!” – This is the noise made when Sylvester the Cat’s head ignites in frustration.
- “YOU get out! This is MY swamp.” – Shrek
- “Well? Where’s the REST of me?” – Daffy Duck
- “I’m going to go to the hospital for a NEW one.” – so old no one remembers, including him
- “You’re just. . .different.” Howard Bannister in What’s Up Doc?
- “Murderer” – Scar in the Lion King (complete with Jeremy Irons accent)
- “You’re a looney duck and a cowardly cat, you really are.” – Porky Pig.
- “Madam, you WON’T” – Merlin in The Sword and the Stone
and, my all time favorite from What’s Up Doc: “Who is that dangerously unbalanced woman?!”
That would be me.
What does it matter where people go? Anywhere, anywhere, I don’t know.
– A. A. Milne.