Do you have a child on The Spectrum? I like to capitalize The Spectrum; it seems kind of cool. I read Hannah Roisin's article titled, "Letting Go of Asperger's", with some skepticism, since I pretty much loathe anything she writes. But I found a miraculous thing on the internet: a sense of connection. I was touched by her article about her son, diagnosed at age 10 with Asperger's. She wrote with sensitivity and nuance about her son's diagnosis, minus much of the shock and awe that her writing usually generates. Then I saw, off to the side, a small icon saying, "We’re inviting readers to send in their own experiences with family autism spectrum diagnoses." So I accepted their invitation.
The story of my daughter’s autism diagnosis began a year before she was born.
My son, her older brother by 18 months, was diagnosed with a speech delay at about fourteen months of age. He was social enough and a curious little boy, but there were no words issuing forth, and the pediatrician recommended early intervention.
He was speaking in spades within a few months of starting the intervention, and it was quickly discontinued. I concluded that I had over-reacted, and so begins the story of my daughter’s diagnosis.
When she appeared to have a speech delay, I thought, “I’m not over-reacting this time. It’s just like her brother. I’m not worried.” When I noticed her fixation on particular toys, carrying them around for days at a time, I thought, “Huh. It’s like her brother’s security blanket, but she uses a toy. Except it changes from time to time.” When her first steps were in a perfect circle, on our little bathroom mat, observed in the mirror while I was brushing my teeth, I thought, “That’s talent. This girl needs no straight lines.” I had no idea how correct that presumption would turn out to be.
I, like thousands of parents who harbor dark suspicions in their heart of hearts but aren’t ready to say them out loud, Googled “autism”. I found as much to dissuade me as I did to confirm my suspicions. Did she say any words? Well, yeah, she said words. At two years old, words are often disconnected and disjointed. Did she make eye contact? Sometimes. Did she seem interested in other people? Well, when she was hungry or needed something, she certainly seemed interested in me.
Then one day came the play date that changed it all. Every parent of a child on the spectrum can tell you about that play date. You watch the other kids, then you watch your kid. Your friend’s kid is rolling a dolly around in a stroller, calling for Mommy to watch. Your kid is sitting silently in the corner, holding a toy screwdriver. When she gets up, it is to tread the border of the rug. Suddenly you know that your kid has autism. The diagnosis is but a formality.
Then begins the real journey, into “Where on the Spectrum Will my Child Fall?” The diagnosis is nothing; absolutely meaningless, compared to the horror, anxiety and sheer panic of “Where on the Spectrum Will my Child Fall?” When a doctor hands you a list of suggested therapies and time which should be allotted to said therapies, you add up the hours in your head and say, “This adds up to 80 hours a week”. The doctor says, “This is what’s suggested.” The underlying suggestion really is that if you want your child to fall on a more acceptable place on the spectrum, you better get on the horn and start these therapies. Pay no mind to the fact that you secretly feel like you are torturing your poor darling child. Pay no mind to the fact that the therapies don’t seem to really gel with your child. If you play the game of “Where on the Spectrum will my Child Fall”, you win or you die. (No essay about autism diagnosis is complete without a Game of Thrones reference, in my opinion) No one dies, of course, but it’s an apt metaphor; the feeling that your child will end up on the “wrong” end of the spectrum feels like a little bit of death.
I think my favorite day of the long journey of my daughter’s diagnosis was the day I realized that she was not an Aspie, she was not one who would “grow out” of autism, she was not “verbal but quirky”. When I came to the end of the game of “Where on the Spectrum Will my Child Fall” and realized that we were way farther down on that spectrum then I had ever thought, a burden was lifted off my shoulders. I didn’t need to play that terrifying game anymore. I had my answer, and now we could all move forward with helping our girl to become her best self. We finally knew what we were up against.
We have come to a wonderful place where we know who our girl is. Her style of communication is uniquely her own. It doesn’t involve a lot of speech or writing, and often her communication doesn’t even involve another person. More than anything it involves art, which was a surprise to us. Though she sometimes expresses frustration with a world that doesn’t always understand her needs, her artwork is full of color and joy. It communicates to us who our daughter really is, and answers the question, “What is going on inside that girl’s head?” There’s a nutty sense of humor and so much love in there. She has a website that shows some of her drawing and clay work and photography, and animation. It’s www.elliecastellanos.com, for anyone interested. The inside of her head is a neat place, you should go explore it.
Our journey of our daughter’s diagnosis will never end, because children grow and learn and change. If you accept a “diagnosis” as a static point in time for your child, if you accept that a diagnosis comes from a doctor or clinic and not from your own knowledge of your child, you will never really know your child. So diagnosis is a daily event in this household. My daughter was diagnosed with autism twelve years ago, but what that really means is anyone’s guess.