How I'm Encouraging My Daughter to Accept Her Autism
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My cell phone rang with a call from “Home.”
“Hello, this is the Autism Association. Would you like to get rid of your daughter’s autism?”
Across my kitchen, I spied the caller: my 11-year-old autistic daughter, Sophie. She watched me with a sly smile, acknowledging the ruse.
“No,” I said. “She would not be my wonderful daughter without her autism.”
“OK, bye!” She hung up.
I rushed across the room to squeeze her and tell her that I would never want to change who she is. I hope this is a consistent message, but fear it is muddled by all of the interventions in her life, like learning supports, speech and occupational therapy.
Since she was diagnosed at age 5, I have worried that the message we have been sending our daughter is, “you are perfect, but…” So, as much as possible we have ignored the diagnosis in our daily life. We were lucky that Sophie moved comfortably enough in the world with just a few intermittent sensory aversions like loud, dark theaters — or maybe it was just that keeping to herself or her stim of running and humming did not draw much attention from other kids.
“Autism” always seemed too dramatic of a word to share. Just uttering it weighed on a conversation, made it seem like our lives were somehow burdened and scary. In an effort to normalize it and brush it off with the nonchalance that Sophie would announce, “I’m done talking now,” I started using it beyond my close circle of friends and family. Most often I dropped it in the context of how lucky I was that my daughter was not susceptible to emerging social pressures. “Oh, we’re exempt from needing camouflage leggings on account of autism and not caring!” This light chatter seemed to surprise people and put them at ease.
In third grade, with most kids growing more aware, I decided to use the word with Sophie and talk to her about her autism. I was struck by the oddness of teaching someone about herself, especially someone who was so content to be herself. I began a few sentences, “you know how you…” and then told her there was a name for it all. Then I slipped an autism book onto her bed and hoped my job was done.
At her class party in fourth grade, I held my arm around Sophie as we watched a video her teacher had produced. A boy spoke, halting here and there, maybe with a slightly high pitch. Sophie elbowed me. “He’s autism,” she said in an exaggerated, knowing way.
I waited a beat for her to draw a connection, but none came. “You know you’re autistic, right?” I said.
So much for my timeline. That was when her exploration of autism began. After that she would ask, “What would I be like without my autism?” And I would say, “you would not be you.” Then I would remind her that she was someone who told the truth, who loved to be in nature, who was committed to protecting every animal.
In fifth grade, she and the psychologist began discussing what autism was and I suggested a class art project based on an artist with autism. This would be a subtle coming out in a safe environment with kids who had known her since kindergarten. It felt like time to solidify some understanding and compassion before they graduated to middle school. Sophie would have a chance to share that she too had autism if she wanted to, which it turned out she did not. She had the school psychologist tell me. Was Sophie trying to spare my feelings, or did she feel pushed by me?
I told her that she could just enjoy the lesson. The day of the project, she was the first to sit down in front of the board. Before anyone else could hear, she blurted, “This artist has autism and I have autism. There, I said it.” None of the kids seemed to notice.
But her questions did not stop. So far, she has called me on the phone twice impersonating the “Autism Association,” asking if I want to be rid of her autism. Does she need the distance of the device and the false identity to share her thoughts or fears? Does she feel shame? Or is it just play? When I see her across the kitchen calling me, I hope she is just seeking reassurance of my love as any child might, while I worry that she is creating a space for me to share a harsh truth.
Recently, she might have given me a clue. We were cuddling in her bed after reading, close but without having to look in each other’s eyes, which might have given her the same distance as the phone had before. “Can you beat autism?” she asked.
Happily, the world’s current understanding of autism is that there is not one understanding. It is so different for each person that I don’t have to lapse into a false narrative that we are hunting for a cure so that no one will suffer as we do, because we are not suffering. We are living a complicated but joyful life as a family.
“What do you mean?” I asked.
“Do I always have to have help?”
“Do you want to work to not need help?”
“We do that every day,” I said.
That focus on the concrete goal ahead must have settled her mind more than the promise of a cure, because instead of looking bashful as she did when she hung up the phone after her phony call, she looked right at me and issued her usual goodnight: “You are dismissed.”