A Thorn in My Pocket: Temple Grandin's Mother Tells the Family Story (31 page)

When did the psychiatric world release autism from its psycho-social shackles and turn it over to the bioneurologists? And why, despite the 1964 research linking autism to epilepsy, did it take until 1985 for the neurological information to reach the family pediatricians who were examining autistic children and advising desperate parents?

According to Gary Mesibov, Ph.D., psychiatry never gave any public explanation for this diagnostic change-over. Though Leo Kanner regretted his remark about refrigerator mothers, psychiatrists, as a group, didn’t acknowledge the shift, nor did they apologize for the pain they’d caused. Instead, they stepped quietly aside, allowing the term “infant schizophrenia” to fade discreetly away.

We mothers would have liked an apology. We deserve it. And so do the fathers. Today in Europe there are still anguished parents who are being led to believe in Bettelheim. Here in the States, what with books and magazine articles, he’s out of the picture, but that isn’t good enough. Even today, mothers in this country tell me their distress over pediatric ignorance and callousness.

“I was sent home with very little help and more questions.”

“He just went ‘Oh.’ He treated me like … he brushed me off.”

I was lucky. I look back at my first meeting with Dr. Caruthers and realize how carefully vague both he and Dr. Meyer were in their first diagnosis of Temple, Dr. Meyer simply calling Temple “a very odd little girl.” Perhaps both she and Dr. Caruthers sensed that I was young and naive. What would be gained by frightening me with an alarming label? Dr. Meyer was European; she might have believed in Bettelheim, but if so, she kept it to herself. Dr. Caruthers was a kindhearted old Yankee with progressive ideas. He recommended that Temple have an EEG to test for retardation, also to see if she had petit mal, a mild form of epilepsy. The autism/epilepsy connection wouldn’t be a known fact for another fifteen years, which in my books, puts Dr. Caruthers neurologically way ahead of his time.

It will take another time lapse before researchers begin to scale the neural complexities of human consciousness: exactly what is it that holds our five senses to a consistently relevant response? Where and how, in each passing moment, do nerves, emotion, and intellect intersect?

V. S. Ramachandran, M.D., Ph.D., in his book,
Phantoms in the Brain
,
*
explores what he calls the “internal construct” responsible for ordering “life’s chaos into a stable and internally consistent belief system.” By way of a lead-in, he discourses on “qualia,” an ancient philosopher’s term for “subjective sensation.” Dr. Ramachandran uses a color blind scientist to illustrate qualia, a scientist who understands the physical laws of color and wavelength processing but cannot actually “see” the color red.

Qualia are “aspects of my brain state that seem to make the scientific description [of red] incomplete—from my point of view.”

According to Dr. Ramachandran, once a qualis laden perception has been created, the brain is stuck with it. A good example is the familiar puzzle picture of a dalmation dog.

At first, the picture is all in fragments.
*

“Then suddenly everything clicks and you see the dog. The next time there’s no way you can avoid seeing the dog. Indeed we have recently shown that neurons in the brain have permanently altered their connections once you have seen the dog….”

The dalmatian picture may possibly throw light on one physical aspect of autistic consciousness. Somehow, the neurons in an autistic brain don’t appear to alter their connections in the same way as they alter for the rest of us. Yet here is what’s curious. If a person with autism can see the dalmation—and he may be able to, autistic people are good at figuring out puzzle faces incorporated into a landscape picture—he can see it just as easily upside down as right side up. Whereas you and I, if we turn the picture upside down, we can no longer construct the dalmation, even though our brain has already registered it, right side up. For us, the picture has lost its visual relevance—
from our point of view
.

What about emotional relevance?

With this quest in mind, I attend a lecture at the 92nd Street Y in New York City, given by behavioral neurologist Antonio Damasio, Ph.D. He has been presenting his studies on the nature of consciousness in a series of books beginning with
Descartes’ Error
.
*
At this lecture, Dr. Damasio tells us that we’re not thinking beings who feel, but feeling beings who think. In other words, the body informs the mind, not the other way around, as Descartes thought back in 1637.

Somehow, we’ve always known this. Despite Descartes’ faith in his “homunculus,” that little man sitting up in our brain telling us what to feel, we’ve always had a “gut” sense that something more than mere mental activity was producing our emotional take on life. “I feel it in my bones,” we say. Or “My heart sank.” Clear, everyday human hunches that more is going on somewhere else.

“Feelings point us in the proper direction, where we may put the instruments of logic to good use… They are the result of a most curious physiological arrangement that has turned the brain into the body’s captive audience.”

Dr. Damasio calls the entire process “the feeling brain.”

During the lecture question period, someone in the audience asks him, “Is there free will?”

He allows that there is “but not as much as we wish there were.”

Dr. Damasio opens his book,
Descartes’ Error
,
*
an exploration of the neurological connections between feeling and decision-making, with the hundred and fifty-year-old tale of Phineas Gage. In essence, it’s a nineteenth century story of a man whose skull was shot through by a tamping iron. Amazingly, Gage survived the accident, but his judgment and character were irrevocably changed. Today, Gage’s skull, which resides in the Warren Medical Museum of the Harvard Medical School, has been subjected to innumerable MRI’s and image scans. Though the scans show no destruction of the areas for motor function and language, Gage’s physical brain loss produced emotional and social lacks surprisingly similar to those evidenced by Dr. Damasio’s patients suffering from brain tumors in the same neural region. They are also similar to those experienced by people with autism.

Temple, in her own book
**
makes an insightful observation on this:

According to Antonio Damasio, people who suddenly lose emotions because of strokes often make disastrous financial and social decisions. These patients have completely normal thoughts, and they respond normally when asked about hypothetical social situations. But their performance plummets when they have to make rapid decisions without emotional cues. It must be like suddenly becoming autistic. I can handle situations where stroke patients may fail because I never relied on emotional cues in the first place. At age forty-seven, [now fifty-seven], I have a vast databank, but it has taken me years to build up my library of experiences and learn how to behave in an appropriate manner.
***

I read Temple’s words and think of her struggle to deal with life, equipped only with logic and memory, her “gut” feelings too irrelevant to count on. I read Dr. Damasio’s statement, “Our minds would not be the way they are if it were not for the interplay of body and brain during evolution, during individual development and at the current moment.”

If Dr. Damasio is right, if human consciousness is composed of a series of interrelated neural procedures woven into the entire body system and our appraisal of it depends upon our “feeling history,” what does that suggest about Temple’s infant development when “feeling” first began to register on her? If from the hour she was born, Temple found all human touch alarming, how did that alarm emotion affect the neural growth of her feeling response?

If her only escape from alarm was in sleep, did oversleeping rob her of the stimuli she needed for the development and interconnection of the neural circuits that would in time become her feeling brain?

I was young and ignorant. I misread oversleeping as “a good baby.” It never occurred to me, nor might it occur to a mother today, to wake up an oversleeping baby.

Nevertheless, if you ask Temple today if she wants her autism “cured,” she says no. No matter how difficult her struggle for what we interpret as relevant, she wants to hold onto her feeling history as she sees it
from her point of view.

Unable to let go of these thoughts, I now brood on the feeling history of Temple’s siblings. Little has been said at conferences about the toll autism takes on siblings: the playground humiliations, the spoiled friendships, the invasion of their small play space at home. I think of my long-ago inability to explain Temple’s autism to the siblings, who were younger than Temple and often bewildered by her behavior. At the time, my own struggles seemed to be all I could handle, or thought I could handle, with the result that I told them nothing. I expected them to have an adult’s intuition and somehow, they managed to achieve just that. But it was asking too much of them and today, it troubles me. What about their feeling history?

Today, in Salt Lake City, Nancy Reiser M.Ed, the wife of Dr. David E. Reiser M.D., the long-ago psychiatrist/psychoanalyst who took me with him when he talked to the Fire Setter, counsels the siblings of autistic children, helping them to come to terms with their distress. She has a waist high, tabletop sand box, beside it a bookcase stuffed with every sort and kind of dollhouse figure, furniture, tree, bush, and pet. She tells her children they can play with all of it and make up scenes if they want to. Often children play out scenes of anguish.

“Sometimes,” Nancy says, “I take these two arm chairs and turn them on their side and throw a blanket over them. Like this, see? It makes a little cave a child can creep into. Sometimes, I offer her a lamp to take in with her. Then I knock on the door and ask if I may come in. I only come in if I’m invited.”

Often siblings confide to Nancy what they can’t bear to tell their own mother, for fear of hurting her feelings.

Nancy, sensing my elderly distress at this, says, “Every child should have two mothers. Lots of children need a ‘second mother,’ another adult who can listen and understand when their own mothers are burdened.”

My own feeling history?

I look back on the early years of raising Temple, those years when I hid and denied my feelings, and recognize today how my denial contributed to my inadequacy. But then I wonder if I could have survived without that denial? It gave me time to make room for hope—real hope, not Hallmark Card hope. Hope born of knowing the options and actively taking them on, that’s what brings nurture into play.
*

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.

Today, listening to the parents’ stories, I remember the Leave-it-to-Beaver world. I’ll always be grateful for the kind, protective haven it provided for Temple. But today I can see, along with all its good points, its limitations and denials. After I was divorced, my telephone rang only four times between Labor Day and Christmas. The first was for my Boston Symphony ticket. Permanent Friday afternoon Symphony seats were hard to come by in those days. The second was for the Irish girls. Good baby sitters were hard to come by, too. The third call was for my vote, and the fourth for my blood. I then remember, with a certain grim amusement, a neighbor’s outrage that I was at Harvard. Her son was the first in a long line of Harvard men not to be accepted as an undergraduate. She became convinced I was taking up his space.

It was a charming world, that Leave-it-to-Beaver world, one that I still miss, but one that never would have been suitable for Temple as an adult. I, too, had to leave. The feeling part of me couldn’t accept it for a lifetime identity. With a certain wistful sorrow, I’ve shed it and left it behind—an old snake skin, blowing away in the grass.

And Dick? What about his feeling history?

The idea that all existence, whatever its patterns, is essentially fluid and subject to change, was too threatening a notion for Dick even to contemplate. If nothing is fixed, then what was the point to the golden world he’d been born into? In the end, desperate to keep his life in a holding pattern, Dick saw my shifting choices for Temple and for myself as insane. It wasn’t an angry divorce maneuver but a deeply felt battle to defend his world from change.

And what a beautiful world it was—that life Dick introduced me to, all those years ago when I was a bride—its graceful patterns stretching back over the generations. The old family apartment in Boston, with the crackle of starched aprons as the maids circled the dining table. The summer house on the Vineyard with every room looking out on the dazzling blue Sound. The Sound lulling him to sleep at night with the soft slurp of its inland tide, the tip of each ripple bright with moonlight.