A Thorn in My Pocket: Temple Grandin's Mother Tells the Family Story (27 page)

“Because,” Temple says “the animal rule is, ‘You don’t kill where you eat.’” That’s a rule she can understand intellectually, but understanding eye signals, which are emotional and ever shifting, still escapes her. Yet without eye signals, how can you develop empathy? Again it’s
Star Trek’s
Mr. Spock, who can’t fathom why humans are so emotional.

Considering these wicked neural bites—concepts, context, eye signals, empathy—it’s not surprising that the life of a person with autism may end up being one of self-absorption. This can be a bit of a heartbreak for parents. When autistic children have been taught how to react in an emotionally appropriate way, we tend to assume an empathy that perhaps isn’t possible. That’s when we get hurt.

Gertrude Stein was once quoted as saying, “There’s no there, there.” Exactly who or what she was remarking about I can’t vouch for, but when you see how these key lacks limit spontaneous reactions, they’re words to keep in mind. Because autistic people can be missing the core sensibility that most of us come equipped with, what we teach them—not only about prepositions and eye contact, but about emotions and face signals—they will accept literally and live by. I agree that, without this “figured out” teaching, an autistic person might be doomed to a life of confusion. Nevertheless, it’s important to remember that the empathy we’ve taught him, is ours. The eye signals are ours. We have imposed our reactions on him and he may lack the emotional ammunition to challenge them. It behooves us, therefore, to be very sure we are giving him our best.

In her younger years, Temple found it hard to clarify the difference between conclusions she’d reached on her own, and those she’d acquired from somebody else. Certain emotions, like her very honest feeling for her squeeze machine, were unmistakably hers. Others, though she presented them as hers, sometimes had a secondhand feel. Yet, given the terms of her autism, how could she know the difference between reactions she’d beachcombed and those that were legitimately hers?

What comes to mind is the long ago incident of Temple’s expulsion from high school, when a bunch of school girls called her “retard,” and Temple threw a book at one of them. It was years before Temple told me she couldn’t read their faces then, can’t always read faces today, may perhaps be still missing that particular sliver of life. Back then, she certainly had no way to know whether the girls were her friends or whether she was the target for their ridicule. By the same limitation, if she couldn’t read their faces, how could she be sure what her face was supposed to look like in return? Was it a joke? Should she laugh? Or was it that particular brand of female malice? All she could do was lash out blindly.

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, homemade mask.

As if all this weren’t enough for an autistic person to contend with, there’s also the challenge of asymmetry. As humans, none of us is evenly balanced. Our face is lopsided, and so is our body. For no apparent reason, our heart is on the left and our stomach on the right. Our brain, too, is lopsided, the left side working for organization, the right in the service of beauty and art.
*

My next pursuit is to find out how our lopsidedness affects autism.

In search of an answer, I pay a visit on Eric Hollander, M.D., Professor of Psychiatry and Clinical Director of the Seaver Autism Research Center at Mt. Sinai Hospital in New York City. Tall and friendly, Dr. Hollander ushers me into his sunny office. On the bookshelf behind him, prominently displayed, is the published program supplement of his 2001 Seaver Autism Research Center Symposium with a picture of Temple on the cover. It seems Temple delivered a key lecture that year to an international assembly of doctors. My feelings? Picture a Norman Rockwell illustration of motherly pride.

How would I describe Dr. Hollander? Well, for starters, what intrigues me is the slow measured tone of his voice, in direct contrast to the import of what he’s saying. He could be delivering a carefully tallied balance sheet to a board room of bankers. Is it a kind of shyness? Or is it years of hiding his hunches behind the graphs and charts of acceptable medical fact? 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. Yet here’s Hollander, his measured cadence addressing cutting edge speculations on the lopsided nature of autism and Asperger’s.
*

“As far as the differences between Asperger’s and autism…there are some people who believe that the only difference has to do with speech and language…. Autism with good language functioning is really to look at Asperger’s…. There are other individuals who believe that…one is a right brain illness and the other is a left brain illness. Autistic brains evidence a left brained lack and therefore, have developed an excess of right-brained skills. Whereas Asperger’s brains evidence a right-brained lack and have developed a left brain excess. Autism and Asperger’s may very likely be right-brained and left-brained illnesses.”

Dr. Hollander keeps using phrases like “there are those who believe,” so I ask him directly does he, himself, believe it? He thinks a moment, then nods. Right away I suspect his careful measured voice to be protective coloring.

“Autistic people have extraordinary visual/spatial skills and ability to integrate visual memory. Whereas Asperger’s individuals evidence a right brain deficiency, lots of problems with visual/spatial skills, but advanced verbal and language skills…”

“You know, the thing that really is amazing about individuals in the spectrum, there are real peaks and valleys. Some skills that are really deficient and other skills that are really extraordinary. Temple’s a good example, there are these particular areas where she’s really extraordinary…Clearly she has extraordinary visual, spatial skills.” (On the deficit side, Temple herself will tell you she can’t balance on one foot, walk a chalk line, or do algebra.)

I ask Dr. Hollander for an official medical definition of autism and Asperger’s.

“Autism is a multi-genetic disorder where there is difficulty in three domains: social interaction/social deficit domain, speech and language, narrowness of interest and repetitive behaviors. Asperger’s is related to social deficit and behavior domain. Children with Asperger’s have normal speech and language, or very often very advanced speech. Whereas autistic individuals often have a deficit.”

Today’s definition also includes people with milder and varying degrees of autism-related conditions, which has raised the ratio of autism from one in five hundred, to one in two hundred. However, the ratio of males to females remains at five males to one female.

Whether the rise in autism is due to more specific diagnoses, or whether it’s actually on the increase, is an open question, and one that concerns doctors deeply.

My interview with Dr. Hollander took place in 2001. Since then, the lopsided aspect of autism have been explored more fully by Simon Baron-Cohen, Ph.D., whom Dr. Hollander presents at his 2003 Symposium. Dr. Baron-Cohen’s field of study is Asperger’s, where the ratio of males to females jumps up to ten to one. Asperger’s people often have exceptional intelligence, but lack a sense of social exchange and empathy. Without help, they can end up as long-winded bores holding forth endlessly (and brilliantly) on their own interests, oblivious to ours. Not so long ago we called them eccentric and avoided them if we could, leaving them bewildered and lonely.

Dr. Baron-Cohen has come forward with a new evaluation of this unhappy phenomenon: the extreme male brain. The left side of the brain is known to be the systemizing side. Dr. Baron-Cohen attributes its over-systemizing, (the big Asperger’s problem) not just to a lack of development of the right side, as Dr. Hollander put forward in 2001, but to an excess of testosterone. (A theory proposed earlier by Hans Asperger.)

“I suggest,” Dr. Baron-Cohen writes, “that two neglected dimensions for understanding human sex differences are empathizing, and systemizing. The male brain is defined psychometrically as those individuals in whom systemizing is significantly better than empathizing, and the female brain is defined as the opposite cognitive profile. Using these definitions, autism can be considered as an extreme of the normal male profile.

“… Systemizing is our most powerful way of understanding and predicting the law-governed inanimate universe. Empathizing is our most powerful way of understanding and predicting the social world. Systemizing and empathizing are entirely different kinds of processes…. And ultimately … are likely to depend on independent regions in the human brain.”
*

Dr. Baron-Cohen backs up his research findings with impressive data, but notes that not all men are systemizers and not all women are empathizers.

Both Dr. Baron-Cohen and Dr. Hollander note that the exaggerated asymmetry of autism and Asperger’s usually appear in a milder form in other members of the family.

“Fathers and grandfathers (on both sides of the family) of autistic individuals are over-represented in occupations such as engineering, which requires good systemizing, but in which a mild impairment in empathizing would not necessarily be an impediment to success.” Simon Baron-Cohen
**

“We’ve been very interested in the repetitive behavior domain. There are some autistic individuals who have these special interests they get absorbed in … very narrow, restrictive, repetitive interests…and when we look in the family, the parents also have these special repetitive interests … It doesn’t mean that the family members have autism. No. What they have is a one-key symptom domain…” Eric Hollander

Dr. Hollander winds up our interview talking about the value to the human race of temperament and exaggerated traits:

“It helps the survival of 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, and people who will take great risks and others who can anticipate problems and are risk avoiders. People with bi-polar [manic/depressive] illness can be extremely creative. We also need obsessive-compulsives. You want all these traits in the population. They don’t become disorders until they cause marked stress or interfere with functioning in some way.”

The research of both men brings to mind Darwin’s “survival of the fittest,” in that it refers to more than a mere competitive nature “red in tooth and claw.” It also means survival of the gene fittest to serve the species.

Taking leave of Dr. Hollander, I depart ruminating on his list of exaggerated human traits, how we rely on them with no thought of the toll they take on human nerve. Actors, particularly comics, are known to be manic depressives, but, whatever the cost to them personally, they never let us see their downside.

And who dreams up those peculiar train schedules: the 11:59, the 8:03? An obsessive does, that’s who. And we want him to be obsessive; we’re counting on those extra minutes.

At a Salt Lake City conference, I run into an engineer/ computer expert who has an autistic boy. He and his wife have been giving family statistics and, as the man puts it, “gallons of blood” to a huge autism genetic research program at the University of Utah. The engineer and Dr. William McMahon, the project’s “principal investigator,” have become fast friends. The engineer laughs, “We recognize that we’re both obsessive systemizers.”

Well, there it is.

The engineer’s words, the doctors’ words. It all points to what I can no longer put off examining: how the genetic traits on both sides of our family have contributed to Temple’s autism.