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.

7 thoughts on “Putting Autism in its Place

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  1. There were four of us born within the space of five years. One of my brothers and I have very sharp, though somewhat differing, memories of our childhood together. My younger sister and my other brother can’t remember that much. My sister often says to me that if I didn’t remember it, she wouldn’t know what happened. Oh the temptation…but I try to tell the truth as I remember it.

    Living with autism in the family can lead to getting comfortable with uncertainty….which really is a good skill/way of being.

  2. On drmercola.com he posts an audio interview with Neurologist Dr. Natasha Campbell-McBride. Dr. McBride recently shared a common thread that may be linking these and other environmental factors together, namely brain toxicity stemming from gut toxicity, otherwise known as Gut and Psychology Syndrome (GAPS). She cured her own son of autism using an all-natural treatment involving dietary changes and detoxification, and her hypothesis is in my view one of the most relevant.
    In her research, Dr. Campbell-McBride discovered that nearly all of the mothers of autistic children have abnormal gut flora, which is significant because newborns inherit their gut flora from their mothers at the time of birth. Establishing normal gut flora in the first 20 days or so of life plays a crucial role in the maturation of your baby’s immune system. Babies who develop abnormal gut flora are left with compromised immune systems, putting them at higher risk for suffering vaccine reactions.
    If your baby has suboptimal gut flora, vaccines can become the proverbial “last straw” — the trigger that “primes” his/her immune system to develop chronic heath problems.

    Dr. McBride has a book out with dietary suggestions and very simple urine and stool tests that can be ordered through various places at a reasonable cost. Please pass the word and give it a shot. It worked for her.

    A Mom

  3. When I reflect on my past experiences, I have to tell you that your boy- and you- had a profoundly positive impact on my life, and in many ways helped to shape the clinician I have become. While I still remember your boy as the bright and happy first-grader I knew, it is amazing and wonderful for me to read your anecdotes about the young man he has become. I have been following your blog for the past several months, and it makes me so happy to know he has come such a long way.

    1. I tried to reply to this once – I am trying again. I can’t tell you how thrilled we are to hear from you, and we know from your work with us that you must be a huge help to those you work with now. Our boy has a treasured “book of memories” with your photo in it. If you email me at lettershead@gmail.com I will send it to you. We still have the letter writing folder you made for him next to his bed, and I thought of you especially when he fell in love with snorkeling – you told us you thought he would love it and he did. Thank you, thank you for getting in touch – it means more to us than you will ever know, especially in these crazy days of transition to adulthood. How did THAT happen??

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