Putting Autism in its Place

There's more than one way to get lit
There’s more than one way to get lit

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.

The Oracle

I have been reading the letters that inspired – and continue to inspire – LettersHead.  She really was ahead of her time; Mom should have been a blogger.  Her words are inspiring, sweet, maddening, crazy, funny, wise.  The best ones are family updates with a little local history thrown in followed by “I have been reading the Encyclopedia Brittanica on [insert topic here]” with a page or two xeroxed and stapled to the letter.  When I read them now I can understand exactly the way she felt as she sat at the typewriter tapping them out, cigarette burning on the ashtray to the right, Hershey bar half out of the wrapper to the left. We may not be passionate about exactly the same things but in large part we are both driven to do what is right for our families and to express it, explain it and expound on  it early and often.  At least once she signed my name to a Letter to the Editor because she had met her quota for the month.

But a key thing I loved about her was that while on paper should could be relentless, most of the time in person, with the family around, she was such fun.  I so wish she had taken the time to write down the stories she spun after dinner – a little less L’Osservatore Romano and a little more Spy Magazine.  Both she and Dad had such great stories about the early and mid 20th century (their WWII courtship is a novel in itself) and they were good at telling them. I know that most of us (with some very notable exceptions) do not do them justice in the retelling.

I admit there were days when those postage-paid envelopes with the telltale IBM Selectric type address on them stayed on the counter for a bit until I was ready to open them – but I’m glad I did and I’m glad I kept them.

Me again.

I think it was the purported demise of the Postal Service that did it. When I said when I started LettersHead because people aren’t writing letters anymore I never thought it would come to this.  It could also be that, after 10+ months of benign neglect I checked in on LettersHead and found out it went on without me, collecting hits and links and daring me to start writing again or pull the plug for real.  Or maybe it’s because my kids are in school and I broke my foot and I can’t drive and I tend to drink too much coffee.  In any case, Lettershead is back and I am going to try again at an epistolary narrative.  Cabin fever aside, some things have happened over the past few months that seem to removed some of the roadblocks to writing; I need to test those barriers to see if they are indeed ready to tumble.  As my friends would say, “good luck with that.”

But I didn’t really give up on the random slice-of-life observations that appeared in this space before.  Autism drops too many choice moments into my life for that, so those can be found at the blog I started in my endless quest for useful places to put things that are cluttering my mind.  It’s called I Wouldn’t Have Missed It and you can find it here.

Finally, I have to give credit to my dear friend M. over at Life in A Skillet.  She sent me As Always, Julia and she proves time and again that blogs are both worth reading and writing if you put equal parts heart and mind into it.

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