Fear, Loathing, and Autism Speaks

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.

8 thoughts on “Fear, Loathing, and Autism Speaks

  1. Reblogged this on Walkin' on the edge and commented:
    “You have been given a beautiful, rare, intense, precious responsibility. Do not screw this up.” Traveling Monkey

    me – Autism Speaks – Corporate – YOU’RE SCREWING THIS UP.

  2. Thank you for this. I found you through Diary. Reblogging this. I need to get my thougths together before I blog myself. And I am SO writing to Autism Speaks. My local AS people that I met when my DS was first diagnosed are so NOT this woman, I’m almost surprised it’s the same organization. Grrrr/Sigh

  3. All I can summon up right now is, WOW!!!! Maggie is blessed to have you guys as parents and you are blessed to have such a beautiful child in your lives. I wish I could articulate what is in my heart right now, but all I can come up with is, Go mother bear, protect your cub. You and Tom are awesome people and I am so proud to say that I’m your Nana and I love you all so much.

  4. I sit here, tears pouring down my face. Tears of pain, and tears of joy. I’m about to turn 50 this year. Until May of last year I spent my life knowing two things with certainty. One was that my Mum loved and loves me, and two that I was retarded and never going to amount to anything whatsoever. Mum just loved her different, challenged and challenging daughter, Pop would have happily had me vanish into thin air, and was no doubt secretly thrilled when I was 17 and he said “don’t let the door hit you on the way out” I took it literally [It's what I do, I miss things, take things exactly as they are said] packed what I could carry on my bike and left. Mum died shortly after that, and I had no interest in ever seeing Pop again. In 2003 I got word of his death, and it had about the same impact on me as someone saying the sky is blue. He’d died to me, to my little heart on the first day of kindergarten when I had a meltdown and they had to come and get me.

    I found your blog because of something you wrote on Everyday Feminism. Your piece “How Feminism Changed Us as Autism Parents” and kept reading from there.

    I grew up in a twilight zone universe where neither Autism, nor Aspergers existed. I grew up KNOWING for certain I was retarded, useless, would never amount to anything and the world would be better off without me. I also grew up knowing Mum loved me and was doing everything she could for me within the limitations of her own health issues. All the best parts of me I got from Mum, the parts that until recently where my certainty that I was a retard and a blight on humanity I got from Pop. Thankfully, I really am me mother’s daughter. To be sure, I’m not even completely certain that Pop was my father. But that’s not important.

    May of last year, someone I adore, someone I’d walk over hot coals – okay, bad example, I wouldn’t notice hot coals – someone I treasure deeply sat me down and gently introduced me to Autism and used her 20 something daughter as an example I could relate to, mostly. Because to me, her daughter was brilliant, funny, and beautiful, just like her Mum. I pointed out that I didn’t see anything wrong or different about her daughter, that she was one of the cooler people I’d met. She went on to point out that her daughter and I shared many things in common, and that sometimes, it was like herding cats. She pointed out that her daughter had never been diagnosed because resources weren’t available or within reach. She pointed out, that I wasn’t retarded (my word, not hers) and that maybe, just maybe I might want to look into this some and perhaps find answers and hope I’d never considered before.

    Thankfully I didn’t go looking at “Autism Speaks” which is a good thing, because I’d probably not have handled that well. Instead I found my way, our way, to resources and professionals that took Autism in adults and women seriously and with great respect. So January of this year I was mentally and emotionally ready to hear that yes, I was on the spectrum. That I’d done a wonderful job getting around my deficits (thanks Mum) and surviving Pop’s constant violence and abuse. I’m pretty certain he never wanted me to start with, but to be told when I was 8 and couldn’t read at all that the follow year I’d have to be put into remedial education was when things really got bad with him. I remember him bellowing at the folks at school “my kid’s not a retard” and that was when it became my name.Growing up I heard that – or some variant of that – more than my name from him. Thanks to Mum’s patience and understanding of my different view of the universe, I came from way behind and started the following year with the reading, comprehension and vocabulary of a Master’s student. (Thanks Mum!!!)

    So in my journey of discovery, growth, and healing, finding the statements from “Autism Speaks” made me realize early on, they DO NOT speak for me and brought back some of that pain of growing up on the spectrum before it officially existed. I’ve not had the best life, but certainly not the worst, and probably the biggest issue that held me back was one Maggie will it sound’s like never have to face. I never learned how to have anything like a safe or healthy relationship with a man. Married a horrible excuse for a human being that was just like Pop and treated me worse than even Pop managed, but I’ve held several, successful careers over the years, and am now investing in my own healing, growth, and journey of discovery. Sounds to me like your girls are going to be in much better shape than I was at 17, and aren’t going to be over impacted by the horrible, ableist thinking at “Autism Speaks.” And thus my tears pain at the remembering, and the horrible thinking at “Autism Speaks” and of joy knowing that your girls have great parents and a bright future. Thank you so much for your blog.

    • It just dawned on me that I should also point out that I took my girlfriend’s daughter with me, and she got diagnosed officially, finally, and her college’s office of disability services is helping make her trip through college a bit easier by taking into account some of the differences in how she does things. That was the main reason I went after diagnosis so seriously, because I knew the hell I went through with school, and if she could have less friction and more traction, this would be a good thing. So I managed to help her and her Mum accomplish something they’d not been able yet to do.

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