In Autism: The Art of Compassionate Living, Jennifer Liss of WireTap writes about the efforts of parents to battle stereotypes about autism and to raise understanding. Autism mother and ex-CNN news anchor Lauren Thierry—-who made the Autism Every Day video—-describes how she tried to capture “autism every day” to combat myths of autistic persons as “idiot savants” and of autism as caused by bad parenting.
“The party line is supposed to be that anything that raises awareness you’re supposed to be happy about. That notion is 10 years old. At this point we need to be showing the world what the vast reality truly is.” She says that reality includes images of kids not sleeping through the night, banging their heads against the wall or running into traffic — not images of kids setting basketball records or passionately playing the violin.
Thierry told her subjects not to do their hair, vacuum or bring in the therapists. She showed up with her crew at their homes sight unseen and kept the cameras rolling as a mom literally wrestled with her son to get him to brush his teeth, as a 9-year-old had a public meltdown, as a 5-year-old had his diaper changed. And, as moms revealed dark and uncomfortable truths about living with autism.
One of those “dark and uncomfortable truths” that the article Autism: The Art of Compassionate Living refers to is the killing of autistic children by their parents. Dr. Karen McCarron, who allegedly killed her three-year-old daughter Katherine McCarron, is mentioned, as is Alison Tepper Singer, Senior Vice President of Autism Speaks an autism mother who, in the Autism Every Day video, talks about wanting to drive off the George Washington Bridge with her autistic daughter.
Both autistic and typical families have reacted with outrage and disgust to Singer’s statement — calling for her children to be removed from her custody and even drawing a connection between her and Karen McCarron. Thierry responds by calling Singer “gutsy and courageous.” She was expecting a call from Singer asking that the footage not be used. But that call never came. “You don’t say stuff like that — camera rolling — unless you are truly ready to play ball with the entire world,” Thierry says.
If most mothers of autistic children, Thierry responds, look hard enough within themselves they will find that they have played out a similar scenario in their minds. “If this is not your reality, then God bless you,” she says.
I am an autism mother and I have not played out a “similar scenario” in my mind.
I am more than familiar with the “autism reality” presented in the Autism Every Day video. My son Charlie is no savant—just learning to read some sight words and one great bike rider and ocean swimmer—-and he has done and does plenty of the behaviors (head-banging, biting, screaming on top of manhole covers in public places) that lead people to associate autism with words like “nightmare,” “devastation,” and “desperation.”
Is it really “gutsy and courageous” to say you have thought of killing your child? To kill your child?
Charlie and our family has been through every terrible autism experience—-the screaming at the doctor’s visits, the feces where they shouldn’t be, the bruises, the dwindling back account. You can read it on Autismland, every day.
As an autism mother, I share much with Thierry and Tepper Singer and the other parents interviewed in the Autism Every Day video and in Autism: The Art of Compassionate Living. I have seen a lot of darkness but it is always washed away with the light that shines from, that is, Charlie, my beautiful, precious, and happy autistic son. Of course we need to show compassion for parents who have difficult lives and have made sacrifices for their autistic children, but the majority of our compassion—our concern—needs to start with the autistic child, with autistic persons.
Otherwise, we are only reinforcing myths and stereotypes about autism.
And, as I wrote on Sunday, “Desperation” should not be a “fact” when raising a disabled child.