In a Different Key: The Story of Autism (19 page)

It would always strike Rimland afterward how, on the one hand, Mark was
“a perfectly normal-looking infant,” and on the other, how clearly he could see that there was “something dramatically wrong with him.” He was walking at eight months, and speaking in full sentences at one year, very early for both of these milestones. But Mark never spoke
to
anyone, and he never said “Mommy” or “Daddy.” From the start, he had cried inconsolably, been almost impossible to nurse, and went stiff against the hands of both his parents—all signs of a condition that their pediatrician, despite thirty-five years in practice, did not recognize as autism. Neither, for that matter, did Rimland, who, despite his PhD, could later say with certainty that he had never even heard the word at that point.

It was Gloria who had the first flash of insight that Mark’s behaviors might have a name. While she was watching him one day, a faint
memory reached her, a recollection of taking a psychology course in college, where the case of a strange child had come up—a boy who was endlessly restless, usually inconsolable, and whose language seemed disconnected from any actual intention to communicate.

When she mentioned this to Bernie, he headed straight for the garage, where they kept all their old schoolbooks. He opened a lot of boxes that day, flipping through every book with the word “psychology” on the spine, scanning for the case Gloria thought she remembered. When he finally returned to the house, he had one of the books with him, a particular page bookmarked by his thumb. “Autism,” he said to Gloria. “It’s called autism.”

—

I
N
R
IMLAND
’
S MIND
, the diagnosis was less an answer than a question he would spend the rest of his life pursuing. Autism, this rare condition: what caused it, and—even more important to him—what would make it go away? With his two-year-old’s future hanging in the balance, he headed to the library to see what more he could learn. Gloria’s textbook had made it clear that the condition was extremely rare, so it was likely that its causes would be thinly researched and quite possibly unknown. To his surprise, however, the first few articles he found told him that the origin of his son Mark’s autism was well established. His wife, Gloria, had caused it.

Like Ruth Sullivan, Rimland never bought it—not for a moment. He couldn’t, not when he immediately saw two compelling reasons for finding the idea preposterous. One was the data—specifically, the lack of it. He was a numbers man, and he could see that no one writing about refrigerator mothers was actually offering any sort of scientific or statistical backup for it. The level of scholarship on this, he was shocked to see, was abysmal.

The other reason was Gloria herself. Bernie had seen her with Mark, how carefully she tended to him, how gently she worked with him. Besides, Mark’s odd fit into the world had been obvious from birth. He had seen that too, and he had watched Gloria work to adjust to Mark’s distinct ways.

So as he pondered what these books and articles on autism were
saying about her, he felt himself getting angry. It wasn’t just the baselessness of the refrigerator theory. It was the insult of it. These people—Bettelheim and his colleagues—were falsely accusing his own wife, this marvelous woman who had been giving up everything just to keep up with the challenge of Mark, of causing his autism. Over the next days and weeks, this ire chewed on him.

But at the same time, it awakened something in him: a resolve to clear Gloria’s name, and that of all the other mothers so ridiculously and scandalously accused. In the coming years, the quiet, clean-cut, bookish man he had always been—just Bernie—would be replaced, little by little, by Rimland, the man with the big beard, the dominating presence, and the uncompromising personality: the agitator, the advocate, and the instigator.

Rimland always thought of autism itself as his primary enemy, as a foreign entity that needed to be defeated. But his war against autism necessitated a campaign against conventional thinking and those who espoused it.

In the beginning, this meant taking on the denizens of the psychiatric profession who saw mothers as the cause of autism. But in order to prove them wrong, he would need ammunition.

In 1958, Rimland set out to get his hands on every published report, every study, every case history in existence that even hinted at autism. He did this at night, on weekends, and between giving IQ tests to sailors while he was traveling. The information he needed was scattered all over the place in various books, journals, and libraries around the United States. As much as he could, he went to these places himself, relying on his handwritten notes and his own near-photographic memory, because photocopying was prohibitively expensive.

Rimland also wrote letters to investigators he could not meet in person, mailing them off to New York, London, and Amsterdam, soliciting details on their unpublished cases and seeking leads to other write-ups by other researchers that he might have overlooked. No one had done this before—pulled together all the reported cases of autism to create and analyze a profile of this little-known condition. He devoted more than two years to this search, until he was convinced there probably was not a single reported case of autism out there that he had
missed. Altogether, he found somewhere in the region of 230 cases written up in some detail. Then he started reading.

Rimland’s goal was to produce a document that would examine the refrigerator-mother theory as scientifically as possible. If the theory held up, he would admit it. But if, on the other hand, the evidence was weak or lacking, then he would go on the attack.

It was not even a close call. As soon as Rimland began teasing out a few basic facts about the world’s known population of autistic children, the mother-blaming concept completely collapsed. This started with his discovery that nearly every mother raising a child with autism was also bringing up children who did not have the condition. It made no sense that these women, presumed to be more poisonous than wasps, would only sting once.

Rimland also noted the complete failure of psychotherapy to make autism disappear. Presumably, an illness that was psychogenic in origin would yield to such treatment. The attempt had been made several times, Rimland found, and always with dismal results. In one group of 42 children, the 29 who underwent a supposedly high-quality cycle of psychotherapy showed no progress at all. They “went nowhere,” according to the study Rimland read. The remaining 13 children had received either inadequate therapy or none at all. Ironically, only some children in this second group made enough progress to start school.

The refrigerator-mother theory presumed that some sort of trauma had occurred early in the life of the child. This might include the birth of a sibling, a stay in the hospital, or the absence of a parent. But there was no pattern of such inciting events in the lives of the 230 children he had read about. On the flip side, neither could Rimland find evidence of children who had acquired autism as a result of such events occurring early in their lives. He also found that the much-reported observation that parents of autistic children were cold, distant, and self-absorbed personalities did not apply to at least twenty-three of the families in his database, who were described as noticeably warm, vivid personalities.

As for the mothers observed handling their child with uncertainty in a doctor’s office or answering a clinician’s questions in a voice that sounded flat and spiritless, Rimland reasoned that these behaviors,
taken as evidence of “coldness,” could just as plausibly have been the result of exhaustion and confusion, a result of the child’s seeming indifference to his mother’s loving words and touches.

Yet another possibility that occurred to Rimland was that the behaviors observed in parents might be clues to a genetic component to autism. Perhaps both parent and child were manifesting variations of the same underlying predisposition, inborn in both, passed down from parent to child as a matter of inheritance. Or perhaps, if not strictly genetic, it could be the result of something in the environment acting upon both parent and child with differing severity.

At bottom, Rimland’s database was throwing off all sorts of clues that autism might be rooted in the human organism itself, and none to suggest that bad mothering had anything to do with it. He was sure that the psyche was beside the point, and that autism was biology.

Knowing he was getting out of his depth, the experimental psychologist went back to reading, and began to teach himself genetics, biochemistry, neurophysiology, nutrition, and child psychology, which he had specifically avoided in graduate school, because he never saw it coming in handy for the career he had planned. To reassure himself, perhaps, that he was not wandering too far off course himself, he decided to start running his ideas by a noted expert in the field: Leo Kanner.

Rimland started writing to Kanner at least as early as 1960, with a deference befitting the situation. Rimland was a young, unknown experimenter with a lot of questions he wanted to ask. Kanner was the world’s leading child psychologist, Berlin-trained, with four decades in practice and a condition named after him in the textbooks. Indeed, in his earliest letters, Rimland was downright fawning.
“Only Churchill comes to mind when I think of writers,” he wrote of Kanner’s scholarly prose, “whose…rhetoric demonstrate[s] similar mastery.”

The flattery worked. Kanner clearly read Rimland’s letters closely, as well as at least one “brief paper presenting my findings in very rough form.” He
encouraged Rimland to keep going.

Over time, as their relationship developed, their correspondence took on a more relaxed tone, like that between mentor and protégé.
Kanner must have known that Rimland’s investigations were moving the younger man in a direction that would correct the sullied record on mothers and autism—much of which had been Kanner’s doing in the first place. Kanner had not yet found the opportunity to recant. But he was making amends another way: by taking Rimland seriously, nudging him along in his efforts, encouraging him to continue developing the theory that autism was organic in nature. It was an extraordinary act of mentorship toward a man he had never met and whose work risked discrediting his own to some extent.

Rimland hit a wall, however, when he approached Bruno Bettelheim.
Rimland’s first letter to Bettelheim was a request for names of families he could contact in the Chicago area, where Rimland had found a lab that could run blood tests for some chromosome studies he was trying to organize. By this time, 1965 to 1966, Bettelheim had read some of Rimland’s writing and knew he was being directly challenged on his own psychogenic theory of autism.

“I…shall give you no help,” Bettelheim wrote in response to Rimland’s request. He told Rimland he could never cooperate with someone capable of such “ill-conceived…erroneous and biased judgments.”

Rimland wrote a second time, asking Bettelheim for copies of
“any reprints, reports or references” related to his cases—a routine professional courtesy. This time, Rimland hit a much deeper nerve, possibly on purpose. Rimland knew that while Bettelheim wrote often for the popular press about autism, he never exposed his work at the Orthogenic School to peer review. Even the progress reports Bettelheim was supposed to provide annually to his main funder, the Ford Foundation, had shrunk in size over the years to just two or three pages.

Bettelheim’s response was scathing. He informed Rimland that the progress he was making with the children in his care required no written proof: what he saw with his own eyes was evidence enough. Then he threw in a dash of analysis of Rimland himself:
“You see, feelings are unimportant to you, and to me they are the most important thing in dealing with human beings.”

—

B
ETTELHEIM WAS LIKELY
rattled because, in 1964, Rimland had pulled all of his research together and turned it into the book that would become the definitive takedown of the mother-blaming theory of autism.

Putting his findings between hard covers had been Gloria’s idea. She had watched Bernie’s “paper” grow, over four years, into a treatise hundreds of pages long. Sometime during 1962, she mentioned that he should start thinking of it as a book. Rimland took her point and began pulling it all into shape, with chapters and a title—
Kanner’s Syndrome of Apparent Autism
. Only one copy existed at that point, and it was all in Rimland’s own handwriting—he didn’t even know how to type.

He approached his secretary at the navy lab, asking if she would be willing to take on the job for some extra cash. She agreed, and over the course of several nights and some weekends, she typed her boss’s words onto a “ditto master,” which Rimland then ran through a ditto machine—cranking out duplicates one page at a time. Once the “books” had been stapled and the envelopes stuffed and stamped, Rimland headed to the post office with dozens of thick envelopes addressed to researchers and psychiatrists around the country, specifically ones he hoped would take the time to read his work, including Bettelheim and Kanner.

He also sent a copy to a small scientific publishing house, Appleton-Century-Crofts. The timing was a fluke; the firm’s publishers had recently come up with the idea of giving out an award that year, honoring the best new “distinguished manuscript in psychology” that it could find. They wanted to make the award an annual prize, no doubt to bring some honor and prestige to the firm itself, so they hoped to find a truly dazzling and deserving manuscript to start with.

Rimland’s manuscript must have struck whoever read it as just the thing they were looking for, because soon enough, Rimland received a letter informing him that he had won the Century Psychology Series Award of 1962. There was no check in the envelope—it wasn’t that kind of prize—but the letter promised something of far greater value to Rimland than any amount of cash: publication.

Two years later, in 1964, after a good deal more editing, revising, and narrowing down, Rimland’s book finally made its public
appearance with a new title. It was called
Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior
. Kanner’s name wasn’t in the title any longer, but he gave Rimland an immeasurable boost by agreeing to write a foreword to the book. There could be no better endorsement than one from the man already known as the
“father of autism.”