There has been a great deal of controversy in recent months regarding the video released by Autism Speaks, titled Autism Every Day. This week saw the release of an article written by Jennifer Liss of WireTap which includes an interview with the filmmaker, Lauren Thierry, which is nicely deconstructed by Kevin Leitch on Left Brain/Right Brain. In the interview, Thierry defends the controversial comment made in Autism Every Day by Alison Tepper Singer, the mother of an autistic child, who says that she would have driven herself and her autistic child off a bridge had it not been for her neurotypical child, who needed her. The article quotes Thierry this way:
"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 absolutely horrified.
I have been the mother of an autistic child for almost seven years. I have never once, not for a single, fleeting, fraction of a moment, thought about harming either him or myself. If I ever do experience such a thought - even if it is a brief flash of a half-thought - if the idea of doing harm to Bud or to myself in any way enters my mind - I will pick up the phone instantly, and I will get help. I will book an appointment with a counselor. I will acknowledge that something is wrong, and that thinking about hurting a child - ANY child - is a sign that a person can no longer manage on her own. I will not write it off as just the sort of thing that happens when you're living with Autism Every Day.
Let me be clear. I do not take issue with Ms. Singer's statement, which I imagine was a hard and painful personal truth - though I do question the wisdom of revealing it in the presence of her child. I do, however, take issue with the extrapolation of the director, Ms. Thierry, who universalizes Singer's personal truth and paints it as the rule and not the exception.
Ms. Thierry's comment is not just inaccurate and offensive; it's also reckless, irresponsible, and dangerous. If an autism mother so desperate as to have homicidal and/or suicidal thoughts were to read it, she would see her deepest fears realized in its message: your desperation is born of autism; it is part of the package; we all feel it; it will never get better. I would imagine that this sort of bleak perspective on the future might make a desperate person take otherwise unthinkable action. I am not being dramatic here. Sometimes it happens. And then it happens again.
Some autism bloggers, among them Kev and Ballastexistenz, have suggested that Ms. Thierry deliberately staged the interviews she did with the mothers who appear in Autism Every Day so that their lives would appear as bleak and hopeless as possible. The article reports:
"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. The result is a window into an exhausting world of interminable work."
In other words, let's take everything we know about what will help a child with autism to be well-regulated, and then let's do the opposite. Had Ms. Thierry filmed us, Bud would have been dysregulated by the very presence of strangers in our house without warning - never mind the video cameras, or my being in the room with him but giving my full attention to someone else, and saying things that were making me distressed. And if I were saying in front of him that HE was what made me distressed? I can't begin to imagine how that would affect him.
So I encourage Ms. Thierry to film a sequel, using hidden cameras, and I volunteer to appear in it. She can follow us around on a typical day as long as she agrees that in the editing she will show the whole day, and not just the worst bits. Yesterday was a pretty typical Mom-and-Bud day; it would have been the perfect day for her to film. She'd have gotten the footage she was after: me bleary-eyed after waking up much earlier than I'd hoped, a few battles of wills, some difficult transitions, a bathroom accident or two.
She'd have gotten some beautiful footage as well: Bud and me at the lake, holding hands and counting "one-two-three," then him diving under and surfacing, his eyes glued to mine waiting for me to ask if he was okay; Bud sitting nose-to-antenna with a beautiful yellow butterfly; Bud lounging in his beach chair, singing and eating an ice cream cone and getting more ice cream on his face than in his belly; Bud and me burying each other in the sand and giggling, then me building a sand castle as Bud looked for rocks to play the roles of King, Queen, Knight, Dragon, Princess and Bud; Bud and me making up a song to the tune of the musical meadow instrumental from his Reader Rabbit game; Bud smashing water balloons on the driveway - first against the garage door, then by throwing them up in the air, then by tossing them two at a time, each new smash a little different from the last as Bud continued to discover that sometimes new is even better than familiar; Bud and me cuddling up at bedtime, as through heavy lids he smiled at me and told me it had been an easy day.
You see, around here, this is autism every day. There are challenges, there are difficulties, there are struggles. But at the end of the day, when the tallies are totalled, there is more joy, there is more beauty, there is more love. Even with autism. Every day.
My hair is not done. My house is not vacuumed. There are no therapists in sight.
We're ready for our close-up, Ms. Thierry.