“Look! There’s our silver lining.” My friend pointed to the blackened sky, the full moon hidden by swollen clouds yet rimming their tops in silver. It was Saturday night and I’d driven The Divorce Mobile, top down–my friend riding shot gun–down to south of Nashville to a Mayberry-like community where California music business types retire and yuck it up with the local yocals. One of Nashville’s best art galleries is a town hub and twice a year the owner puts out a fine spread of grub, hires a stellar band (this is Nashville,) and throws a grand party. And the art never disappoints either.
Like me, my friend never lets a chance to cut the rug–or the lawn, in this case–pass her by. A third person joined us and eventually a few others. We urged the wall flowers there–those tapping their toes and trying to jig while stayed glued to their seat–to join us. “No,” declined one woman. And then, a few moments later, she came to me as I stood at the drink table, having run into some late arriving friends. “Here, my brother will dance with you,” she said. She pointed to him, he looked at me. I looked at him….Hmmm. Cute guy. We joked around a bit and then he asked me to join him for a dance. Very limber. Very uninhibited. Did I mention cute?
Then the party ended. Too soon. He was in this sweet spot that night in search of land and I mentioned I had a lead for him. He grinned and said, there was a reason for us to meet that night. And then, a few moments later I turned to my late-arriving friends again and told them the latest about Grace’s art–invitations to show in New York, Washington and possibly Florida. Turning to cute guy, I gave him the context: “My teen daughter has autism and is an artist,” I said. He looked at me and grinned again. “There’s another reason we were supposed to meet. I have a cure for your daughter.”…Suddenly the mood dampened, my face, I’m sure, grew hard, my smile disappeared and though I’m pretty aware of my own body language, I stood there most of the rest of the evening with arms crossed or in some form of “cutting off.”
I am intentionally sparing the details of what this supposed cure was, but cute guy’s sibling came along and the two of them proceeded to repeatedly interrupt me as I attempted to answer their questions and explain some about our history. My late-arriving friends stood there rapt. Watching. Listening. At one point, one of the friends said: “I bet you’ve heard this a lot.” Yes. I have, I told her.
Yes, I have. So many times. Though I think the last time was probably three years ago–someone selling organic frozen food–had tried to hawk a cure for my daughter’s autism. In 14 years, I’ve seen cures du jour come and go: hug therapy, shadow therapy and patterning. Actually, those three predate me. And for the sake of history, let’s not forget the Bruno Bettleheim Refridgerator Mothers legacy that for decades blamed “cold mothers.” On the heels of those theories came discrete trial training, Louvas-style. I was accused by ABA (Applied Behavior Analysis) local and online evangelists of “abandoning my child,” “abusing” her, even, in my refusal to sit her at a kitchen table eight hours a day while a parade of college students at $10 an hour sashayed in and out of my house drilling her. My choice to do what I believed was right for my child was likened to refusing to give her chemotherapy had she of been diagnosed with cancer. I’m not making this up. And, when we appeared on a national television talk show about autism and Grace’s art, I endured a backstage, harsh, lip curled questioning of a less than warm-fuzzy commentator “had I done ABA with my child?” (The comment necessitated a trip to my therapist once I returned home.)
And, you know what? Those Evangelists? They lost their faith. And their children are still not cured. Like mine. ABA was replaced with intravenous chelation, bone marrow transplants, blood transfusions, a myriad of off-label medications, oxygen treatments…the list goes on. And on.
My daughter is no longer a recently diagnosed preschooler. She’s 17. We have survived a myriad of user-friendly interventions, most proven, some not-so. I’ve traveled this arduous journey a decade-and-a-half, nearly, gripping all the while to my sense of self, my truth and and an aim to always honor her Spirit. The Evangelists are parents who began their own journey with their children at the same time. And then there are whole communities of them out there. Some are still searching for “The Cure.” Some of them still bitter. Some of them still asking: Why?
As the cure-promoters continued to be in my face that beautiful otherwise blissful Saturday night, I came back at them. They had ONE piece of the autism puzzle. ONE. I agreed with the validity of their one piece. But I told them that the spectrum was far too complex to generalize their theory to all. I stressed genetics. Genetics almost always came first (with exceptions for things such as birth trauma,) and then environment. I answered their questions about what I thought was the source of genetics. And I pushed back that my child was not broken. One questioned how I could say that. My child, I told them was perfect as she is. And I questioned them: What if the reason for the increase in their numbers was something spiritual? What if a child with autism is born to teach us to serve? To be tolerant? To just BE in this world?
Yes. I’ve heard it many times that there’s yet another brass ring out there. Saturday night reignited old stuff in me. Old autism baggage. Long ago I chose to embrace our lives with all of its’ extra challenge incumbent with my daughter’s diff-ability. Do not tell me she’s broken. Do not tell me that you’ve got a cure for her. You can shove that cure, cute guy. We are fine just as we are. If you want to dialogue with me, if we can put down our defenses and exercise some nonviolent communication principles maybe we can hear one another. Please respect my journey. This is my Truth. I embrace it. I cherish it. It is who we are. Perfectly imperfect. And so it is….