A Thorn in My Pocket: Temple Grandin's Mother Tells the Family Story (25 page)

“Grief, rage, guilt, denial—it all courses through us. Then comes the next shock. We, the parents we thought we were, in a world we thought we understood, have in a single moment, become painfully and permanently changed.

“Identity. That vital and fragile core of our being, born of moments when we feel the most ourselves, acquired consciously and unconsciously over the course of our years, slowly visible to us and to the world while at the same time being shaped by us and the world.”

“That’s not like you, a friend says. And we agree. Or perhaps we say nothing and think to ourselves, That’s all you know!” Either way, another layer of identity is laid down.

“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 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.

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

Yes, that’s more like it.

A wedding party of Sikh Indians in full regalia is making an entrance through the open door next to where I’m sitting. They’ve come for an English civil service marriage prior to their own wedding ceremony.

Two grandfathers parade in, white-bearded and brilliantly turbanned. How Victorian London must have adored India, that exotic jewel they stole for their queen’s crown. Next comes an ancient grandmother, her orthopedic shoes sticking out from under her best sari. Then the groom, a blue turban setting off his glossy black beard. Last the bride, story-book beautiful, her red silk, gold trimmed sari rippling in a halo over her long black hair, her perfect features set off by a gold caste mark.

Applause leaks down the stairway, overhead I can hear chairs being pushed back. Fifteen minutes and it’s my turn to speak. I gather up my notes, I know what I want to say.

As I go up the stair, I take a last look at the story book couple and wonder what will be their future? They look so like an Edmund Dulac illustration for
Bluebeard
.

After an introduction, I tell the English mothers the first truth I’d stumbled on, all those years ago: if I didn’t survive, Temple wouldn’t survive. Somehow, we’d both have to grow up. I to raising Temple along with my puppy self. Temple to learning to act like a normal citizen of this planet. But that led to the question: what is normal and normal for what? Hard on its heels came another question: why had I been unwilling to act on the fifties diagnosis that Temple was an “infant schizophrenic” when her father and the rest of the world accepted it?

Well, when I look back, I see that my so-called brave stand wasn’t really all that brave, or all that clear. No doctor ever directly recommended institutionalizing Temple, neither Dr. Caruthers, nor Temple’s Viennese doctor. Perhaps doctors in those years didn’t recommend that sort of thing straight out, but waited for a parent to suggest it? I remember when neighbors asked me what autism was, I’d say “infant schizophrenia,” and feel a inward shudder. Even with that, I didn’t take in the full implication of what I was saying. Instead the words felt vaguely aggrandizing of Temple’s oddity, important enough to make her more acceptable to the neighbors. Putting Temple in an institution never crossed my mind, nor did I ever dream that Dick would seriously go that route.

But as soon as I’ve considered that absurd old dream, I recall Dick’s ceaseless intention to do just that. Even after Temple had graduated from an accredited high school, he was still trying to arrange for her to go to a classy home for the retarded. How could I have ever been blind to his intention? But I was. That’s the oddity of denial. In those days we didn’t talk openly about personal matters, it wasn’t considered the thing to do. With a subject as touchy as Temple’s autism, neither Dick nor I ever allowed the words to surface.

That I didn’t take in fully either Dick’s intention, nor the “infant schizophrenia” label, was probably lucky. There’s something to be said on the side of denial, particularly when one is an immature twenty-two. The world I’d been reared in, the world I married into, didn’t ask for much from me but social grace. Talent, curiosity, and passion weren’t encouraged, in fact were actively discouraged. The old Victorian saying, “Be good, sweet maid, and let who will be clever,” still reigned in the “cold roast” Boston of my young years. Nevertheless, the label’s brutal slap left its mark.

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 the sequence of my 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!

The pain from this young error explains why it matters so much to me today to talk to mothers. In the rush to hear the bizarre details of autism, the world brushes aside the toll it takes on its caregivers and this indifference contributes to the guilt all parents carry.

Another point: Temple was born a little before the big Bettelheim push, and today it occurs to me that it may have been her salvation. After all, what would I have done a few years later, if Temple’s doctor had recommended that she be placed under Bettelheim’s care? It was one thing to hold out against Dick, but could I have had the nerve to hold out against a doctor? What kind of argument would I have marshalled? Life and its timing—unlike a movie story—can be extraordinarily haphazard, and sometimes that works in your favor.

After all, a movie story is crafted schematically out of back plots and character sketches, assembled into emotional “beats,” which are then nailed together into deliberate arcs, to make a dramatic wagon for actors to climb aboard and drive. Along about twenty minutes into the movie comes what’s called in scriptland “the first turning point.” The wagon gives a lurch, the actors roll about and shove each other, the beats turn into fist fights and the wagon threatens to come apart. But it doesn’t. If it did, that would be the end of the movie and you wouldn’t get your money’s worth. A movie wagon is built to take the actors, and you along with them, all the way to a second turning point, at which point it will give a final lurch and rush to THE END.

But our family life, from September 1949 to August 1962, didn’t follow any tidy construction rules. It had its emotional beats all right, but they were confused and I denied them or concealed them or didn’t even know what they were. The turning points arrived in misplaced jolts, so there was never anything to do but hang onto the sides of the wagon, careen along as best we could, and in the words of Mrs. Huckle, do our “veddy, veddy best.”

In the open question period that follows each lecture—I now lecture often for Future Horizons—experienced parents want to know specific details: how did I deal with this or that problem. But those who’ve just learned their child is autistic are still too much in shock to ask public questions. They’re the ones who seek me out in private, the ones for whom I’ve learned to take a long time washing my hands in the ladies’ room, where invariably one of them slips alongside me.

“Have you got a moment?” she’ll ask. There amid the flushing toilets, the roar of the hand dryer, she pours out her grief over the loss of the child she thought she’d bear, the maternal role she thought she’d play out. She reminds me of a photo I once saw of a teenage autistic boy. The camera had caught him, eyes shut, leaning over sniffing at a door latch. His face is contorted into a distressingly grotesque grimace. Over what? Joy in smelling things? Recognition of a familiar latch? His idea of a smile for the camera? All I’m told is that he’s making wonderful progress and smelling is the way he identifies things. In the background of the photo, slightly out of focus, his mother watches him. The blur of her anxious face is all there is to her story.

It’s the same kind of distress a caregiver must suffer over an Altzeimer patient. The person whom the caregiver has known and loved—who once loved her in return—has disappeared. So a piece of the caregiver has disappeared too. But it’s the caregiver who feels the loss.

Often women come up to me with secret questions about God, questions they don’t dare ask their pastor, or a parent, or perhaps even their mate. “Do you believe in God?” they whisper, looking frantic and not wanting to be overheard. They’ve been raised to believe that God loves them, that His eye is on the sparrow.

“Then why isn’t His eye on
my
sparrow?” Autism feels to them like a spiritual betrayal.

Occasionally a father will speak to me after a lecture, interesting because autism is a five to one male disorder. Autism is harder for men than for 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 give out what we can. We accept.

Men are built to resist and stand fast, their muscles are hard to the touch, they need physical strength to hold them to their honorable intent. The downside of that honor is shame. One father tells me, “Everything you said your husband went through, I had to go through before I could accept my child.”

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

A cowboy father with haunted eyes tells me his child’s autism is the price of his horse whispering. “I can talk to horses. I know how to train them, I can make a horse do anything. But I can’t talk to people. That’s why it’s my fault my child is autistic.”

An Asian father is past explaining. His wife protests, murmuring softly, “We must learn to live without hope.” No, he intends to confront me with his question:

“What if we can’t stand it?”

I recognize in that moment, that Dick couldn’t stand it either. And in exactly the same way. It was too crazy, too dark, too close to his own edgy soul. His shame went underground and turned into rage against me.

As I wrestle with the questions parents ask, I discover that my relationship to them will not be to tell stories or give specific, “how to,” advice, but to give them—from the vantage point of years—an overall insight to carry them through the daily strain of raising an autistic child. To do a good job of that, I will have to learn for myself the basic problems of the autism disorder.

What do we mean by contextual thinking and conceptual thinking? What produces mind sidedness? Over systemizing? Obsessive and repetitive behavior patterns? How does a lack of eye contact affect empathy? Ego? Exactly what is the full syndrome of autism?

The full syndrome of autism. That’s the ticket. Time to start on that trip up the Nile.

*
Today Temple notes the importance of using the restrictive interests of an autistic person to motivate him into serious study.

**
Hampshire Country School was a hands-on school with high ratio of teachers and psychologists to students. In effect, it was private tutoring far in advance of its time.

*
Because of the sound volume on the band stand, key changes are signalled by fingers. Up for the number of flats, down for sharps. Key of C, a "C" with forefinger and thumb.

*
Temple Grandin.
Thinking in Pictures
, Vintage Books, 1995.

Chapter 9

Looking for the Source

My first look at today’s medical research on autism takes me to Pittsburgh to interview Dr. Nancy Minshew, Associate Professor of Psychology and Neurology and head of the Autism Project at the University of Pennsylvania Medical Center.

I find her small and breezy and immediately want to call her “Nancy.” She and Joyce Douglas, who’s introduced me, are clearly old chums, Joyce having been president for many years of ABOARD, Pittsburgh’s parent association for autism. Pittsburgh is a city that functions like a small town; everybody knows each other and gives real credence to Hillary Clinton’s line that it takes a village to raise a child.

Dr. Minshew talks hard and fast, racking up her points with a mammoth compilation of research data. Her intensity seems to spring from a determination to change the destiny of Pittsburgh’s autistic young. After all, they’re the children of her friends.