Trigger warning: fear-mongering, ableism, othering of autistic people.
A little more than two years ago, I began to wonder.
A little more than a year ago, we pushed beyond our initial pediatrician response and reached out to specialists.
On Valentine’s Day, 2013, Margaret received an official diagnosis of classic autism.
Ten days prior to Margaret’s diagnosis I watched a military doctor at RAF Lakenheath administer the ADOS test, the final component of the diagnostic process. I had, I thought, made peace with the idea–we had been told months earlier by a developmental pediatrician that we should “begin to prepare” ourselves for a diagnosis. The occupational therapist we saw prior to that was relieved we had said the word “autism” because that meant “I can say it too. We can’t mention it unless the parents do if there’s no official diagnosis. Parental reactions are too incendiary.”
Too incendiary. Remember that.
Because Lakenheath is hours away from our home and we had an early appointment, no babysitter was possible. It was agreed that I would be in the room while Tom wrangled Moira elsewhere. The doctor looked at me with very kind eyes as I asked “You’re SURE? You’re SURE this isn’t just a speech delay? This is the diagnosis you’re recommending? YOU’RE SURE?!” She was sure. She was right to be.
The world went white. It buzzed. I couldn’t make out anything else she said through the giant, booming voice in my own head, drilling through the buzz and taking me by the shoulders and getting into my space and shouting, BELLOWING, in my brain:
“Do. Not. Screw this. Up.”
The next forty-five minutes are a blur. We were handed the American Pediatric Association’s book about autism and sent on our way. We went to the RAF commissary for snacks for the drive home. I staggered around the aisles, still buzzing (“DoNotScrewThisUpDoNotScrewThisUp”) paying for the food, somehow. Going back to the car and lasting maybe 15 minutes, maybe 15 seconds, maybe an eternity–maybe, in a way, I’m still there–until I broke into great whooping sobs.
“It’s so big, Tom.” I wailed. “This is so big.”
It is a small comfort to me that I didn’t, even in the white-noise depth of the moment, say that it was too hard, or too sad, or too bad. It is a small comfort to know that even then, way down deep, I knew the truth of the matter was not that this–not that autism–was tragic, but that the enormity of what I really needed to understand meant that the ice-cold, brutally reptilian voice of my maternity had to leap over the doctors and the rhetoric and the fear to speak the loudest:
You have been given a beautiful, rare, intense, precious responsibility. Do not screw this up.
But why the wait? If the diagnosis was so certain, and we knew and had educated ourselves and surrounded ourselves with a community of autistic adults and teens, people who filled us with hope and pride and joy, why did we wait? Nearly 13 months lagged between our first questioning and our first serious action.
We were afraid. I was afraid. The conflated rhetoric surrounding diagnosis, decrying doomed marriages and bankrupted futures and finances, was as immense as the confusion we felt. The biggest organization of them all was the first we turned to: Autism Speaks. Some of what they wrote was useful, but some of it was clouded in language that unsettled me deeply (discussed here in this fabulous, must-read post by Jess of A Diary of a Mom). I wanted to give them the benefit of the doubt for so long. They are the largest. They have the biggest reach. Awareness surely counts, yes? Surely with enough work they’ll grow to include autistic people more and more in their upper echelons, yes?
Last night I read Autism Speaks co-founder Suzanne Wright’s Call to Action DC. My blood boiled and my head buzzed as it has not done since that cold, cold February day when we became sure that this thing–this condition that people spoke of in the hushed tones saved for the sick and the dying–was going to touch our lives. An excerpt from the introduction, the tone of which does not improve over the length of the piece and which, if you read the post from A Diary of a Mom, is sadly indicative of an alarming linguistic trend:
This week is the week America will fully wake up to the autism crisis.
If three million children in America one day went missing – what would we as a country do?
If three million children in America one morning fell gravely ill – what would we as a country do?
We would call out the Army, Navy, Air Force and Marines. We’d call up every member of the National Guard. We’d use every piece of equipment ever made.
We’d leave no stone unturned.
Yet we’ve for the most part lost touch with three million American children, and as a nation we’ve done nothing.
We’ve let families split up, go broke and struggle through their days and years.
Now that, my dear friends and family, is what should call for an incendiary response.
Margaret is not missing; she was never lost. She is not ill. My family is not broken, we are not a tragedy, and the enormity of my rage requires that I have to, HAVE TO, resort to incendiary language here to decry this steaming pile of utter horseshit in the strongest terms I can muster:
Autism Speaks: my child, our children, our friends, our family, is not a crisis.
HOW FUCKING DARE YOU declare that we are?
Autism Speaks, you may not speak for us. You may not speak for me. You may not speak for my child. Your blue lights and puzzle pieces may not cast shadows on my home. Autism does not destroy families. They are destroyed by fear. This is why children suffer: because their families become convinced that their children are inevitable ticking time bombs of incomprehensible burden. Futures are bankrupted because nobody believes in presuming competence and investing in real, genuine, dignified accommodation; we are too busy being told to be afraid to see what is possible.
I hope like hell that Margaret never reads anything like what Suzanne Wright has written. I know that this is an impossibility. The actual words change, the people change, but the attitudes don’t change as quickly. Much as it sickens me, she will lose her innocence. What terrifies me–what shakes me to my very core–is the utter loathing in Suzanne Wright’s words. Oh, how I dread the possibility that Margaret may internalize that loathing; how I dread that her joy may crumple and her hope may shrivel from the core out. We must, MUST not support these attitudes. We must turn away from fear-mongering, othering, and martyrdom.
We are turning away from Autism Speaks.
Our family gets one chance. One chance to raise our daughter to adulthood. One chance to make a difference. One chance to turn to joy.
And we cannot–we dare not–screw this up.