* * *
Eric Courchesne writes: «The development of normal social and language skills depends upon the comprehension and use of attention-directing gestures and the coordination of attention among objects and people». In order to comprehend a situation and respond normally within it, the child must be able to detect «salient changes in the environment», stay focused on «channels anticipated to provide relevant information», and effect «smooth, accurate, and rapid shifts of attention in response to attention-directing stimuli such as facial, gestural, and vocal signals during social interactions».[32] If this ability is impaired, the child — and adult — must make do with what we might call «behavioral echolalia», learning behavior as she initially learned speech. Both are learned through imitation; both are delayed in autism; and both are «echoed» exactly, not altered according to the situation. From such rote learning, we should expect strange results. What is relevant information for Jessy may well seem, by non-Martian standards, disconcertingly irrelevant.
So hear Jessy as she mulls over our near accident last week at a dangerous intersection. She was getting a cold that day, or thinks she was — she’s very interested in the exact time of onset of colds.
«That means I would have been hurt or killed as well as having a cold». I’m used to it, but even to me this sounds bizarre. It brings back, once again, a day from the long ago, watching my daughter, not yet two, crawling serenely away from us all. «There’s nothing the matter with Jessy», I told my neighbor. «She just has a distorted sense of what’s important». Words like that are hard to forget.
What’s important? What’s unimportant? How do we know? How dots she know, when what’s «salient» for her isn’t salient for you and me? One Sunday I tell her not to cook me any bacon. Jessy knows why; she knows all about cholesterol. «Because I don’t want you to have a stroke». So far, so good — very good. But then: «Does it count for taking a personal day?» It does, I assure her. And she thinks it over, working out the rule. «Even if not dead. Just in the family».
She picks up on the news now; that too is progress. When a local girl died in the bombing of Pan Am flight 103, Jessy took in the whole story — the planned Christmas dinner, the empty place, the wrapped presents under the tree — concrete, wrenching details that would be significant to anyone and are significant to Jessy too. She reaches for an appropriate response. «I shall use the big worry doll for grieving». Then she considers; she has smaller worry dolls, and there are hierarchies of grief. «I shall save it for if there is a death in the family». And finally, «But I’m sure it is much worse than if the kitty gone». Who can say she hasn’t got it right? Another time the news shows a terribly burned child. We’re told it was a nurse’s error. Errors, of course, are something she understands. It’s harder, though, to work out which of them are important and which unimportant when they’re all important to her. «This is an error that I [ought to] get upset. Never mind that typo on the computer!»
Over the years I’ve come to understand these episodes better. Of course she knows about important and unimportant; we’ve been working on that since she was able — at fifteen, maybe — to understand the words. She knows, too, that she isn’t sure which is which. So, with that busy mind of hers, so good at inferring the rules of numbers, at systematizing hierarchies, she’s trying to work out these rules. She reviews them again and again, trying to get them clear. There are rules for work — there are (a new word) priorities. There are priorities at home, priorities everywhere. They may not be Jessy’s own. They rarely are. But she has learned to accept them, if we give her time, if we take her through them gradually, step by step. It’s a process of negotiation, between us and her, between family needs and her own desires, between herself and the world. I’ve given striking examples, odd enough even to seem funny. Mostly, though, it’s a matter not of weird contrasts but of ordinary, everyday living.
As when, unexpectedly, we can’t go for our regular Saturday shopping. Daddy needs the car to visit his stepmother, a shut-in he hasn’t seen for months. Jessy, of course, is distressed, though now, mostly, she can control herself. This time there are no tears or screams, only the familiar, insistent questioning. If we can’t go to the supermarket, if we can’t get all the things on the list, what will happen?
I walk her through it. We do need a great many things, but we can get them at the downtown market. It becomes clear, however, that the particular items that Jessy has in mind, Stella D’oro cookies and Orville Redenbacher popcorn, are not available downtown. Considerable talk, then, about this, as I present the possibilities: we can do without cookies, we can do without popcorn, we can buy another brand. Jessy acknowledges these alternatives, which she knows well enough. Reluctantly, repetitively, she acquiesces. But that is not the end of the process. Finally, she repeats to herself (in question form, but she knows the answer) the correct priorities: «Is it more important to go see Winifred than to get popcorn and Stella D’oro?» I have, of course, spent the last half hour telling her exactly that, that Winifred is lonely, that she hasn’t seen Daddy for months. Though her question is «rhetorical», I answer, «Yes». And Jessy is now ready to affirm the principle no normal seven-year-old needs to have made explicit: It is more important to go see a shut-in relative than to get popcorn.
* * *
Jessy was nearing twenty when one of the young companions set her a new goal. Taking a sheet of paper, Joann wrote at the head of it, THINKING OF OTHERS. She helped Jessy think of a few things that might consist of. They listed them. The formal layout helped focus Jessy’s attention; the examples gave the social abstraction specific, concrete meanings. Jessy has spent the ensuing twenty years extending those meanings into something that may be called a general concept.
At first it was a behavioral category, its instances specified and rewarded. Then, as Jessy got the idea, she began to come up with her own examples. Not that she had miraculously acquired insight into other people’s feelings; you still had to — still have to — tell her you are sad, and her ritualized «I hope you will feel better» is not really very comforting. Thinking of Others remained touchingly concrete: «I put nutmeg instead of cinnamon in the pudding because I know you don’t like that». She told us she didn’t need us to make an Easter egg hunt for her anymore — but she made one for us. When two good friends came to visit she put two lollipops and two Nabisco wafers by their bed, bought with her own money. She even began to connect her own experience with other people’s; remembering when she lost her wallet, she could reflect, «If I find a wallet with identification I will call that number and ‘I found a wallet’ and that person will be so relieved!» The situation was hypothetical, but the attribution of feelings, even the adjective, was correct.
Thinking of others, of course, is hard when you don’t have a «theory of mind» to allow you to see something from another point of view. Even in the unemotional, physical world, Jessy can’t do this. She locks the door behind her when she leaves for work, even though she knows I’m still inside and there’s no need to. She scrapes the ice off the windshield on the passenger’s side, her side, leaving the driver’s side obscured. She thinks I can see what she sees; if she knows something, she thinks the person she’s talking to knows it too. We are back in chapter 3, with the Sally- Anne test. For years we wondered; now we know that in autism it is the cognitive, not the emotional, handicap that is primary.
Nevertheless, in social life it is the emotional that is salient. It is that handicap, that lack, that we notice first, that troubles us most as we try to communicate to our autistic child, as we did to our other children, that extraordinary triumph of thought and feeling we call the Golden Rule. «How would you feel», we asked them, if Tommy hit you, grabbed your cookie, told you he hated you? Clever George Bernard Shaw said not to do unto others as you would have them do unto you because tastes differ. But even that iconoclastic reversal recognizes the rule’s emotional core, as the fact that we call it a rule recognizes its cognitive, generali
zable element. But by whatever combination of rational and emotive we ourselves understand — and feel — it best, whether we elevate it to a religious principle or reduce it to simple good manners, whether we honor it in the breach or not at all, it is the foundation of civilized social life.
Jessy was late into her teens before it made any sense to try her on «How would you feel if». And even then her own translation reveals what she made of it: «Tit for tat».
It was my own failure of imagination. Of course I’d learned that I couldn’t rely on words alone to reach Jessy’s understanding; I had to illustrate any new idea through action. Unfortunately it is far easier to illustrate Socrates’ negative formulation of the rule than Jesus’ positive one. I do something nice for you. It feels good. That’s how people feel when you do something nice for them. You want them to feel good, don’t you? Even to me it doesn’t sound compelling. The Socratic version is more immediate: Don’t do unto others as you wouldn’t have them do unto you. Maybe Tommy did hit you, but don’t hit him back.
But with no convenient Tommy at hand, the best I could think of was, I fear, the worst. There were plenty of things Jessy did unto others that she wouldn’t like done to her. She snapped. She hit — not hard, but she did. She even came at one good friend with a rake. All I could think of was to do the same thing to her, as far as possible in exactly the same way. Jessy didn’t like loud, sudden noises. She certainly didn’t like being hit. Nobody had ever come after her with a rake, but if they had, she might have been frightened but her feelings wouldn’t have been hurt. Socrates’ rule brought her no nearer to understanding why her friend Tracy never came back. It’s not surprising she made it into tit for tat, and experienced it not as teaching but as punishment. Only the capacity to imagine other people’s feelings can distinguish tit for tat from the Golden Rule, the Old Law from the New. And it’s not enough to imagine them; you have to put them before your own. That’s hard enough for normal human beings.
Nevertheless, slowly, slowly, it begins to happen, even for Jessy, even through tit for tat. «Why aren’t you unpacking the groceries?» Jessy asks angrily. «Why aren’t you helping in the garden?» I reply, and she understands. Or we arrange to feed her brother’s cats for four days: he will come stay with her when we go away. You help me, I help you, is fair exchange. How many people never get any farther?
But Jessy is going farther. Now she spontaneously verbalizes the principle Joann taught her half her life ago. Someone gives her a book about insects. It has a scorpion on the cover, and Jessy is interested in the story I tell her, that when her brother was a baby in Ceylon a scorpion almost bit him but we killed it. Her busy mind works it over. «So if a scorpion had bit him, then would have no brother». Pause. «And that’s a good reason to cry even if it [makes you] exposed to cold». And then, astonishingly, «Because it’s better to feel sick than selfish».
It’s a highly hypothetical outcome for a healthy brother in his midforties. I’m even more joyful when principle leads to action. Last year she put the cat’s water bowl outside the bathroom when she took her shower. It wasn’t pure altruism, for she did not want to hear Daisy scratching at the door. Still, by her lights she had earned the right to say, as she did, «That is thinking of others». But this year — I was already working on this book — she thought, not of Daisy’s comfort, but really, truly, genuinely, of her father’s.
We were walking together on the beach. It was windy and cold, and she decided to go up to the house for a sweatshirt. She came back wearing it, but there was something else over her arm. Her father’s jacket! Forty years of growing! It was worth the wait.
* * *
Charity begins at home, but there is more to thinking of others than thinking of your own family. Very early we provided a jar in the kitchen «for the poor children», and Jessy contributed her penny too. Poor children had no nice house, no good food, no Christmas tree. She must have taken some of that in, because it was many years before she could verbalize «others» that she made her book about the poor Indian family. But it was not until recently that her enthusiasm for weather phenomena propelled her beyond such unrealized generalities.
For days the big news on the Weather Channel was Hurricane Mitch. Jessy followed its course with interest; hurricanes can be classified, their changing strengths expressed in numbers. TV showed her Mitch’s results: mud slides and devastation in countries she’d never heard of, Nicaragua, Honduras. I marked the newspaper reports for her and she read them. «Honduras is one of the poorest countries in the Western Hemisphere». «Over 6000 people died. Over a million lost their homes. Over 10, 000 were injured and over 5000 disappeared. Over 80 bridges were destroyed and countless roads are impassable». We went through our closets. Willingly Jessy took the bags to the collection point; spontaneously she applied her phrase, «That is thinking of others». At the benefit carol service, she was enthusiastic as she put her own five-dollar bill in the basket. She even used the word «charity», which I didn’t know she knew. (Still, she suggested next day that the people in Honduras could «evacuate», take a plane, a ship, to somewhere else, and had to be reminded they were too poor.)
There is personal altruism, and there is citizenship. Though I’ve worked hard on one, I’ve held back on the other. So I was surprised this year when amid vague talk concerning the next election Jessy informed me that the president can’t have a third term and that President Roosevelt had almost four. When on earth did she learn that? Then I remembered Marilyn, one of the most inspired of the Jessy-companions, tireless in thinking up activities Jessy could enjoy and interactions that could extend her social behavior. Marilyn must have told her. Jessy was already twenty-two when Marilyn lived with us. Ronald Reagan was running for president, and Marilyn thought Jessy should register to vote.
We didn’t think so. Much as we thought the country could use another vote against Reagan, it didn’t seem right it should come from Jessy, who barely knew he was alive and had no idea what he or any other president might do. Jessy remained unregistered.
Fast forward. We’re in the kitchen glued to the television, listening to the three-way debates of 1992, when suddenly Jessy pipes up, «You’re talking about the deficit!» Already interested in bank statements, she knew about deficits, and she didn’t like them. We’d also been talking about store closings; her sister had closed one of her shops, because of something called a recession. I showed her a report of another Main Street store closing something to read, something to expand awareness. I certainly wasn’t prepared for Jessy’s question: «Is it because of Bush?»
I attempt to explain that many factors go into a store closing, that it’s not the fault of just one person, even the president. But Jessy needs clear, definite answers; she’s already lost interest. Yet not altogether. Next day the local paper continues the story. Guess what! I read that about Newberry’s and it is because of Bush!
Shift forward again. Its 1999, and there’s not a deficit but a surplus. Jessy hasn’t noticed; she doesn’t know that word. Shall I tell her about it? She’d have no doubt whom to vote for. After so many years, is it time for Marilyn’s efforts to bear fruit?
I don’t know. Parents have their limits, and not just from aging. As her father couldn’t take her as far in math as she could go, so I don t know if I can, if I want to, if I should, propel Jessy into a citizen’s responsibility. Yes, she pays taxes, the concrete sign of it, and she understands at least some of the things that taxes go for. But can I take her to register, knowing her interest rides on the simplicity of an obsession— worse, that her vote would be no true choice but a mere echo of what we told her? Yet there are other single-issue voters, after all, and this issue is preferable to many I can think of. I don’t know. I just don’t know.
* * *
But I do know there’s progress, that Jessy’s still growing. That she’s not merely, passively, being taught, but taking in hand her own journey toward empathy, thinking about it, wording at it. Now, as I write, she is re
viewing, confirming her social rules. Should she refuse when she’s asked to work overtime? «Only if I have another appointment, like giving blood. Because thinking of others is important». To think of others you have to notice how they feel. «I will learn by the voice when someone is irritated. Loud». Four days later: «I will remember how people feel when they get irritated. First the voice is loud and abrupt. But expression could be wrinkle face. Like frowning».
«Sometimes can tell when people are happy even if not smiling because can tell by the face. When people are happy eyes always glow and face shine like sun. And if people are sad face always looks gloomy like clouds. And between happy and sad like partly cloudy». Jessy said that twenty years ago, and joyfully I wrote it down. But did she say it or know it? Years went by and I heard nothing like it again. Maybe Joann told her that; maybe she only picked up on it because of sun and clouds. But now it’s spontaneous, now she’s noticing, now she’s focusing on those subtle indicators. Now she’s beginning to understand. When her load of magazines and catalogs breaks the janitor’s recycling bag, on her own she goes and gets him a new one. And she tells me, I felt so bad for that janitor! Let the millennium begin.
Chapter 10
«I guess Darth Vader learned from consequences! Like me!»
Inside the kitchen folder there is, not an envelope — an envelope’s not big enough — but another folder. It’s full and it grows fuller. It’s labeled Social. Its bulk is a reminder of what we slowly realized: that after the years of easy teaching, years of discovering the possibilities of what Jessy could learn, even excel at, there remained the wide expanse of things she could never excel at, that she could learn only partially and with the greatest difficulty.
Exiting Nirvana e-2 Page 13