mrs cutler part two of like a thousand because i (still) can’t imagine i’ll ever stop talking about it

Hey, you were warned

As I said in yesterday’s post, I’d been scrambling throughout Mrs Cutler’s talk to capture her words on paper. Again and again, I found something that she had just said reverberating within the deepest part of me – dizzily spinning and vibrating and begging to be remembered. I desperately wished I’d thought to bring a video camera so that I could watch her again and again, rewinding and taking in the bits that meant so very much to me.

At one point in her talk she said, “People with autism so often need to make the uneasy moment – the moment at which they are overwhelmed by their environment – stand still so they can analyze it and memorize it. But there’s another moment coming and then another and another still.”

And I thought, “By God, yes.” But not just my baby girl, so overwhelmed at times by this life that comes at her a mile a minute and leaves her no time to translate and parse and process and internalize because Woosh!, here comes the very next piece of information and now it’s gone but wait, I’ll try for this next one or the one after that – and there I was, feeling that frenzy down to my soul – how was I going to make THIS moment stand still?

So I wrote as fast and as furiously as I could. When I had to, I wiped away the tears that blurred the words I was trying so hard to write. I was determined to record it all.

Many of the stories that Mrs Cutler told were from her book. Please read the book. Buy it, borrow it, tell your local library they NEED to have it. And no, you don’t need to have a child with autism or be an adult with autism or even know how to spell autism to read the book. Please, just read it.

In the instances where I recognized a story from the book, I allowed myself the luxury of bathing in her words without the pressure of writing them down. I knew I could come back to them later and take them in again at my leisure. Below you will find quotes pulled directly from the book. That’s why.

I’ve chosen to present her words without further commentary. Perhaps tomorrow I’ll add some of my own thoughts, but for now, I think it best to let Mrs Cutler’s wisdom stand alone. A couple of the quotes are simply fragments of sentences – all I could catch in the moment, but a phrase that dug deep, or, was, as Mrs Cutler would say, “Close to the bone.”

Enough from me. Here goes.

Ed note: Any errors, misquotes or heaven-forbid mischaracterizations of Mrs Cutler’s words are mine and mine alone. I’ve tried my best to be accurate, but don’t completely trust my ability to translate my own notes. I hope that if I’ve made an error, those who were there will let me know.

*

The extraordinary gifts and infuriating scramble that is autism

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Temple isn’t ‘cured’ of her autism. She is fulfilled – and she’s fulfilled in the way that SHE wants to be fulfilled. THAT is the goal.

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There are no answers. There are only choices. And making choices takes a kind of persistent courage.

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If something you’re doing isn’t working, change it. And you, too will be changed in the process.

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The problem with being a parent is that it’s on-the-job training.

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[When you are faced with a moment with doctors or teachers or any other experts that shocks you, that renders you speechless or throws you for a loop] DO NOT ACT in the moment. Go home. Think it through. Run it into the ground. and then write an e-mail. But DO NOT ACT in the moment.

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Autism is a buzz word, but no one really knows what the buzz is about. Nor do they really want to dive deep enough to find out. In that moment of meltdown, they (the onlookers) lose what THEY think THEY are. And then they are forced to confront the shame of their own identity.

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Autism is old and our discomfort with it is old. Its history of rejection is long and our history of explaining away our discomfort is longer. But once you get the hang of this, it’s not threatening anymore.

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Our neurology gives it to us for free, but it is not free to those on the spectrum.

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Quoting Temple on conceptual thinking, “I don’t go in for this flighty idea stuff. I work from the bottom up.” And she must, but it’s a great strategy.

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Autism uses up all the oxygen – it puts the other children in the family in the roles of helpers. But they are children too and have a right to the freedom of childhood. Yet when as parents we are no longer able to care for our autistic children, it is the siblings who will have to step up. We have no choice but to build strong, willing siblings and we must make sure that they don’t feel they have been shortchanged.

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I wanted her to have a choice in her own destiny.

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I had to learn that madness and terror are in us all, and it’s only by a hair’s breath that we are who we are.

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Temple’s journey is marked by shared concern and shared expertise. There was nothing more important than consistency between school and home.

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Now that they are all in their sixties, the rest of her class believes they ALL had a hand in raising Temple. And they did.

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Most of all you have to hang on to a sense of who you think you are.

*

The following are quotes from Mrs Cutler’s book, A Thorn in My Pocket. The book that you absolutely, positively need to read.

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I hold onto her hand and vow that I won’t let her freeze to death in that tempting snow drift, so I too, mustn’t go there or we’ll both freeze.

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Their innocence lost, they had to be braver and more generous than children should have to be.

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I’ve peered into the black hole, and I’m still alive … I make a second resolve: I will keep my head up out of the dark; I’ll allow myself to breathe. Have I been holding my breath all this time? Yes, and it’s been keeping me from thinking. I’ll breathe; I’ll think.

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The doctor is human. He will no longer intimidate me.

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She no longer plays with her feces, but she still has tantrums, still goes into wild giggling and spitting. Though I must clean up after her, I’m not allowed to join her in that enchanted land. Tantrums are hard to handle, but exclusion breaks the heart.

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To Hell with Bettelheim – and diagnosis – and myths! I, too, will improvise for the safety of my young.

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Of the headmaster of the school where Temple will spend her early years – He has two requests: “First, let us stay in close communication. If there’s any kind of difficulty, we want to be able to talk it over with you honestly. If that’s not possible, then teaching will be impossible too.”

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Yes, Temple still has tantrums, and no, they’re never easy. The tricky part is figuring out what she can manage and when she’s using a tantrum to get her own way. There’s a bit of the manipulator in all of us.

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If lose track of my own life, how can I coax Temple to look for hers?

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“Please don’t write about autism,” the psychiatrist says. “We don’t know what it is, we don’t know what to do about it. You will only hold out hope and there is none.” That’s her sum total diagnosis? Rage stomps through me. Every imperfection I’ve witnessed among the retarded (ed note: please remember this was a different era in which the word had not yet taken on today’s connotation) and brain-damaged seems more bearable, more explainable, more humane than this quick dismissal. But I soon realize it isn’t a dismissal, it’s a plea, an open admission of medical bewilderment. The psychiatrist is conscientious, she’s achieved good results with some of her less desperate patients, children whom she calls affectionately “sand in the machinery.” But here her conscience stops.

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I think it is at this time that Temple asks me, “Why am I different?” She doesn’t ask, “Am I different?” but “Why am I different?”

“I don’t know why,” I tell her, “but don’t worry about it. We’re each of us different, each given traits that work for us and against us. What is important is to understand the traits so you can run them, and they don’t run you.

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Love the best in yourself, treat yourself tenderly, carefully, help yourself grow. And as you grow, you’ll find you want to make the best grow in those around you. And in doing this, without really knowing why or when, we each gain a stake in each other. That’s love. That’s the glue that holds us together.

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I take another leap to my maturity. Thanking the doctors, I gather up my coat, and thinking of the Alice in Wonderland picture of Alice rising up amid the playing cards, fight the urge to dismiss them all in Lewis Carroll’s words:

“Who cares for you? You’re nothing but a pack of cards!”

At my rising, faces close, notebooks snap shut. The dust motes dance in the sun bars and there’s a general looking at watches. The meeting has been a competition of wills and for the first time I know that I know more than these doctors.

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How much it must have cost this stiff little man with his faintly sneering mouth, to swallow his Viennese pride and conclude that [...] he and his colleagues had summed up autism the wrong way around, and that, perhaps, he had looked at me the wrong way around.

The last time I saw him, he rose from his power chair. “Mrs Grandin, you have done a job that has put the entire staff of Children’s Hospital to shame. Do you realize it is as rare as if Temple had recovered spontaneously from Leukemia?”

I treasure his words. His blessing.

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Adolescence is hard enough for any child, but autistic adolescence is something devised by the devil.

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Autism isn’t an exotic disorder, out there somewhere on its own, the fault of mercury or inoculations, waiting to be “cured” if we throw enough money at it. Autism is an exaggeration of what lies in us all. And studying it has been my form of exorcism.

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Know that you and your child will come through. Yes, That’s how I’ll begin.

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You’ll know more, feel more – be awed, puzzled, scornful of sentimentality and less willing to accept the obvious.

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You’ll survive, that’s what. You’ll find your footing and stagger up onto dry land holding on tight to your child. You’ll limp, but you’ll make sense. There’ll be good days and nightmare nights, moments of great pride and days when you want to slink out of sight. But it won’t be raw knees in the undertow.

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But what of the identity of our child who, we’ve just learned, is autistic? A child whose take on the world physically, socially and emotionally is distorted by a sensory scrambling neither we nor the doctors can fully understand? Is that why she can’t speak? Can’t bear to be touched? How will we talk to each other? How will we live without touching each other? My baby who can’t bear to look into my eyes? And here’s the catch. A baby needs a mother to know she’s a baby. But a mother needs a baby to know she’s a mother. The sensory scrambling facing my child is reinforced by the emotional scrambling facing her parents.

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When the usual responses can’t grow, consciously and unconsciously, a whole family is changed.

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From early babyhood when Temple didn’t like to be touched. she appeared to be bored with my attempts to play with her. and as a result, made me feel snubbed and rejected. Had Temple been born later in my sequence of four children, I would have played peek-a-boo with her and hugged her anyway whether she liked it or not. Instead, I behaved toward her like a girl who’s been scolded for being “too forth-putting,” another Victorian warning for young ladies considered too bold. I went out of my way not to offend Temple with my touch and games. Wrong! Wrong! Wrong! Temple wasn’t a Victorian, she was a baby!

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Occasionally a father will speak to me after a lecture [...]. Autism is harder for men than women. Women bring life into the world and on the whole we pretty much accept what comes. Our bodies and our dispositions are built for flexibility. We swell with each pregnancy, then slip back into our old shape. Our breasts fill with milk and empty. We take in what comes and we give out what we can. We accept.

Men are built to resist and stand fast, their muscles are hard to the touch, the need physical strength to hold them to their honorable intent. The downside of honor is shame.

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Another says, “I look at my child and I see myself.”

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Then slowly, with no innate concept, no intuitive clue – conscious intelligence her only guide, and even then not sure – she’s taught herself over the years to prepare her face “to meet the faces that you meet.”

How bright and brave of her to want to meet us anyway, armed with such a flimsy mask.

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Scientists like to present studies they can prove and back up with statistics. They hold a longtime scunner against the word “imagination,” preferring the safe pomposity of “conceptual leap.” As if “imagination,” given its head, might run off in any old flighty direction and meddle with accepted facts.

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Quoting Dr Eric Hollander – “It helps the species to have a broad range of different traits … People in the autism spectrum who have extraordinary mathematical, visual and artistic ability. You need them just as you need people who have extraordinary social abilities …”

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At every autism lecture today I meet denying parents and I wouldn’t want to rob them of that first reaction. I see my young self in them, and remember – while my young self was stalling around denying – my extraordinary good luck. Not brains, not insight, no so-called courage. Just plain old “good luck.” I pray a little comes their way. And along with the luck, some extra money. At a time when I needed it, I had money.

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It’s taken me all these years to understand the rigidity, the tension, the temper, the obsession – the traits Dick so despised in his daughter – they were all his own. And who was there to help him in his childhood, long before anyone had coined the word “autism?”

Now at last I see it. My rage is gone now; sorrow hits, and I ache to forgive.

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Traits are gifts. Dr Hollander is right in noting that they survive because the human species needs them. Nevertheless, upon occasion they can combine and produce too much of a good thing, and that in essence, is what autism is: an exaggeration of the family traits. In our family, they’re splendid traits, with a splendid history.

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Today I am astonished by Temple’s worldly accomplishments, but what I love most about her is her courage. Despite the hazards of her autistic landscape, she’s never hesitated to go “through the little door,” with no guarantee that what’s on the other side will ever make sense to her.

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I’m here. That’s what matters. Survival is a statement, a conviction that the game is worth the candle. I’ve learned to love the game, learned to climb up and peer into the gears, pistons squeaking up and down at cross purposes. Amazing.

*

Please click HERE to buy A Thorn in my Pocket. Because I haven’t even begun to scratch the surface here.

20 thoughts on “mrs cutler part two of like a thousand because i (still) can’t imagine i’ll ever stop talking about it

  1. This…this is amazing. You took it all and put it together perfectly. I am going to read this over and over. Those quotes, I can hear her voice through yours.

  2. The quotes from her lecture…the exerpts from her book…they leave me breathless, craving more. I just ordered the book. I HAVE to read this….

  3. So much valuable stuff here. Thank you for posting.

    The paragraph about fathers certainly resonates with me, but so do so many others. I think I shall be reading Mrs. Cutler’s book in the near future.

  4. I am in tears. I am at a loss for words. These quotes and snippets from her book….I am buying this book today and then passing it on and on. Thank you Jess, for sharing this with us. Thank you Mrs. Cutler, for blasting through the mountain and leaving a trail for us to follow.

  5. I love this —> “There are no answers. There are only choices. And making choices takes a kind of persistent courage.”

    Thank you. Now, off to the the interlibrary loan site!

  6. Oh my word… thank you so very much for taking time out of your life to share this experience with us. My husband and I are both scrambling to read her book starting now. Every one of these things cuts right to our middle. Thank you a billion times for taking time to share!!!

  7. Thank you so much for sharing!!! As someone very VERY new to this diagnosis your work & insight is so helpful & appreciated – you are making the path for those of us that are following behind… *Ü*

  8. I wish Mrs. Cutler had the benefit of this community that your diary has created when she was raising her daughter. I keep thinking that she must have felt so alone….like me….until I found you! What an amazing post. Thank you for writing it and keep them coming!

  9. I had to walk away from this a few times to let her words sink in and really process. So many emotions, so many thoughts. I am sad to know there is not a single copy of her book listed anywhere in our state library system in Delaware! I’m ordering my own copy so I can nibble away at it.

    The two things which resonated most immediately for me:

    “There are no answers. There are only choices. And making choices takes a kind of persistent courage.” This reminds me that even on the days I am feeling so utterly defeated and overwhelmed, it is a choice. I can choose to do something about it or I can choose to wallow. Ok, fine, some days I wallow; I am choosing to not deny the emotions or stuff them down.

    and this: “Autism is harder for men than women. … We accept.

    Men are built to resist and stand fast, their muscles are hard to the touch, the need physical strength to hold them to their honorable intent. The downside of honor is shame.” This resonated so keenly after some struggles watching and listening to my husband with our son. Ms. Cutler’s words reminded me of what i already knew; my husband just wants to fix it and does not know what to do or how to be when he can’t or doesn’t see that the real way forward is acceptance.

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