Last Tuesday, journalist and author Emily Bazelon gave a talk on girls and autism at TEDxWomen 2012. The link to the video of her talk found its way into my inbox three different times last week. Each time, the sender asked some version of the same question – “What do you think of this?”
Each time, I balked at answering. I simply couldn’t bring myself to watch it. You see, the link was titled, “The Particular Tragedy of Autistic Girls” and well, that wasn’t exactly inviting to a mama who sees her girl as anything but a tragedy.
But it made its way into my inbox again this morning, and finally, I couldn’t ignore it. I bit the bullet, praying that the title was simply misleading. What I found was profoundly disappointing.
I don’t doubt that Ms Bazelon had the best of intentions when she spoke. She seems like a lovely woman, and, for all appearances, one who wants to make things better for girls like my daughter and the women they will become. Unfortunately, I fear that she’s doing far, far more harm than good.
She begins by delineating autism. High Functioning Autism, or Asperger’s, she explains, is marked by “the profound social difficulties of autism with a normal to high IQ.” Later, she will tell us that “Classic Autism means low IQ.” As I trust my audience to know, this is an oversimplified, artificial, inaccurate and desperately misleading bifurcation of the autism spectrum. (See a prior post on the topic HERE.)
Sadly, this early oversimplification sets the stage well for what follows.
Ms Bazelon tells us about meeting a young teenager named Kaitlyn, who has Asperger’s Syndrome. In the course of her talk, she asks us the following question.
“What if you’re a girl like Kaitlyn and, through no fault of your own, your empathy sensors are essentially blocked? You get to school and you just can’t access all the social cues and ways of being in the world that seem to come easily to other girls.” Later she will ask, “But what if you are a girl like Kaitlyn - A girl with an empathy deficit?”
Throughout her talk, her own words will betray the absurdity of her assumption that Kaitlyn has ‘blocked empathy sensors’ or, indeed, ‘an empathy deficit.’ Yet, undaunted by her own inconsistency of thought, she will persist in perpetuating the stereotype until the bitter end.
“Kaitlyn would hear other kids talking and she felt intensely left out,” she will say. “While it’s hard for [autistic girls] to express empathy, they care a great deal about what their peers think,” she will add. She will even tell us that when she last checked in with Kaitlyn, now in her last year of high school, she told her that she is writing a book about animal spirits. I thought surely that last bit would give Ms Bazelon pause, but no such luck.
My daughter, who was diagnosed at age three with classic autism and has since been re-diagnosed with PDD-NOS, is the most empathetic creature I’ve ever encountered. She is, in fact, so empathetic as to be challenged by the intensity of empathy in and of itself. Much of her anxiety comes from her inability to filter her empathy. There is no hierarchy of caring for her. A baby crying in the distance is just as upsetting to her as her Mama crying in front of her. “What happened to the baby?” she will ask without fail, “Did it fall out of its Mama’s arms?”
That said, my daughter’s social challenges stem not from an empathy deficit (or ‘blocked empathy sensors’ if you’d prefer) but in communicating her empathy to other people in the way that they expect it to be communicated. Dragging a cardboard book across my face to dry her Mama’s tears might not look to Ms Bazelon like empathy, but I can assure you, that’s precisely what it is.
As she begins to wrap up her talk, Ms Bazelon says, “I would like to tell you that it gets better for girls like Kaitlyn and Marguerite – for girls with autism when they get older, but sadly, that’s not sometimes not the case.” And then she asks the question, “So what can we do to help girls and women with autism?”
Well, I would argue that one of the first things that we can do is to stop making assumptions about who they are and what they feel – or don’t. We can TALK to them. And when we do, we can LISTEN to what they have to say – in whatever mode or capacity they are able to ‘say’ it.
We can stop wedging them into the narrow theories to which we’ve grown attached over the years and begin to open our ears and — and our hearts — to the idea that, maybe, just maybe, *real* empathy starts when we realize that neurotypicals aren’t the only ones who experience it.
Brooke, comforting her sister, July, 2011
I’d encourage Ms Bazelon, and anyone else with an interest in the topic, to check out Rachel Cohen Rottenberg’s fabulous website, Autism and Empathy.
Click HERE for one of my favorite articles on the topic.
Ed note: I fear that my gratitude to Ms Bazelon for shining a light on some of the very real challenges faced by autistic girls and women may be lost in the fact that I have taken issue here with the WAY in which she went about doing so.
So, for the record, I do appreciate her efforts, and in no way, shape nor form do I want to shut down the dialogue. To the contrary, I want to ensure that we delve more deeply into it, engaging autistic girls and women when we do so that THEY can lead the conversation and lead us to a better understanding of their experience.