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Schopler’s lifetime work to understand autism earns Massey Award

Eric Schopler feels almost embarrassed to say it, but he remembers his boyhood in 1930s Germany as being quite pleasant.

He grew up in the small village of Furth, home to another slightly better known expatriate named Henry Kissinger who would go on to make his mark on the world.  The town sat in the shadow of Nuremburg, and locals boasted with chauvinistic pride that the first train in Europe ran between their town and Nuremburg.

Schopler’s father was an attorney who could afford to support his wife and their two boys and little girl.

The family used to vacation in a country village between their home and Munich. Schopler remembers hiking with his brother John up to the ruins of a medieval castle that stood high on a mountain above the village.

They were lucky to be boys, too young to grasp the evils that lay ahead of them, evils that would lay ruin to their lives and seemingly idyllic country.

The Schopler family had lived in Furth since 1700 and were as patriotic as most Germans. Schopler’s father had served in the German army during World War I, and at his mother’s urging, had traveled to Munich in the early 1920s to help quell a Communist revolt.

None of that mattered after Adolph Hitler rose to power. It didn’t matter, because the Schoplers were Jewish. And slowly, inevitably, their once lofty place in their community began to crumble.

“The first thing that happened was I got kicked out of public school,” Schopler said. “And then we were no longer allowed to go in the public swimming bath in the river.”

Finally, in 1938, a group of town officials came to his father and told him they had seen the blueprints for wiping out all the Jews. They knew the freight that the death trains to Nuremburg would soon be carrying.

“They told him, ‘We are grateful for all you have done for this country. We think it is time for you to get your family and go.’ My Dad said, ‘I’ll try to go to the States and get a job.’ They said, ‘No, take your whole family and go.’”

Understanding autism

Schopler is near 80 now, and even though he has slowed down a bit he is not yet ready to stop. No matter that Schopler officially retired this summer from the University that has been home to him — and his work — for the past 41 years.

It is his work, he knows, that will endure long after he is gone. But there is still more work left to finish, he said.

In the early 1970s, Schopler, along with Robert J. Reichler and Barbara Rochen Renner, developed the Childhood Autism Rating Scale, or CARS. Using a 15-point scale, professionals evaluate a child’s relationship to people, body use, adaptation to change, listening response and verbal communication. The scale is used not only to classify autism but to assess individual variations important to the growth and development of each child, Schopler said, The categorization system is based on a comparison of CARS scores with the corresponding expert clinical assessments of more than 1,500 children.

“The reason why I’m still here now, even though I’m in my early retirement, is because I’m revising it to broaden it,” he said.

There is, for instance, a book in him he has to get out, and maybe two, Schopler said.

The first will be about autism, not just the side of it related to science, but the side connected to people that Schopler now considers part an extended family — his extended family — that now reaches across continents and to the reconstructed country he once fled.

These are families of children with autism involved in TEACCH (Treatment and Education of Autistic and related Communication-handicapped Children), the behavior management system that sprang into existence in 1972 when the General Assembly passed legislation to create the program in the Department of Psychiatry in the School of Medicine. The program was based on the rigorous empirical research that Schopler had conducted at the University since 1964.

Autism continues to mystify scientists more than half a century since it was first identified. The complex behavioral disorder encompasses a wide variety of symptoms, most of which usually appear before a child turns three.

Children with autism are unable to interpret the emotional states of others. They cannot recognize anger, sorrow or manipulative intent. Their language skills are often limited, and they find it difficult to initiate or sustain conversations. They also frequently exhibit an intense preoccupation with a single subject, activity or gesture.

The causes of autism remain unknown. The TEACCH approach is a behavior modification program focused around each child’s skills, interests and needs. Division TEACCH grew into the first statewide, comprehensive community-based program for autistic children and their families.

Today, Division TEACCH operates 10 regional centers in North Carolina serving more than 5,000 people with autism and has become a center for interdisciplinary training in autism. Professionals from over 45 states and 30 foreign countries from Serbia to Singapore have participated. Topics covered range from diagnosis and assessment to structured teaching and parent training.

It is also a program that offers a valued place for parents, which had not always been the case. Psychologists once believed that autism was an emotional disorder caused by bad parenting. Part of the story Schopler hopes to tell is how parents came to be viewed as a valued partner in helping their children instead of an adversary.

The second book will be about the state of education itself, a state that he believes has fallen into disrepair.

A great university, Schopler believes, must encourage the clash of ideas, not cloister the like-minded. It worries him that it is possible at some universities to major in English without a lick or line of Shakespeare.

This unshakeable belief in the value of a classical education was soaked into his bones at the University of Chicago where he encountered such renowned educators as Mortimer Adler and Robert M. Hutchins, the former chancellor. Schopler believes, as Adler and Hutchins once did, in the unshakeable notion that there is such a thing as great books, works of genius worthy of being considered timeless and universal, and ever relevant to society.

“I owe most of my education values to Mortimer Adler,” Schopler said. “Adler was a Jew and he not only developed the Encyclopedia Britannica, but also the Great Book Series that was published out of the University of Chicago at that time.”

The books included the works of Aristotle and Saint Augustus and Saint Thomas Aquinas, who for Schopler spoke to “a sort of coherent voice.”

“The saying used to be, ‘You should come to the University of Chicago where you have Jews teaching Catholicism to atheists,” he said.

Recognition for a lifetime’s work

Through the years, Schopler’s work has earned him many honors. In 1985, he received the O. Max Gardner Award, which since 1949 has recognized faculty in the state who “made the greatest contributions to the welfare of the human race.”

In 1993, he received the North Carolina Award, the highest civilian award bestowed that is sometimes referred to as the “Nobel Prize of North Carolina.”

Several months before his official retirement, Schopler received a C. Knox Massey award.

Nominating him for the award were Gary Mesibov and Lee Marcus, the current directors of Division TEACCH.

In the citation, they wrote of their longtime colleague: “Dr. Schopler and successive generations of his colleagues and students conducted research that probed the neurological bases of autism; developed an innovative diagnostic and treatment tools that are still widely used today; devised a coherent system of visual supports, organizational strategies and material and environmental modification methods for teaching people with autism; and established that parents were not to blame for their child’s condition (as was commonly believed at the time) and could, instead, be productively enlisted as ‘co-therapists’ in their child’s treatment.”

Schopler said he felt good about winning the Massey, and felt even better about donating the $6,000 award to TEACCH.

“You feel grateful when you spent 30 years in a place that has been supportive of your efforts to do things that are somewhat controversial and tolerates that and supports you in that,” Schopler said. “I always felt like I got overpaid for doing something I love to do.”

Doing his part

And that is why Schopler, even today, still believes in the search for timeless truths in an age when science has cast the very idea in question.

If there is one thing he has learned it is that human nature is what it is and always will be. The capacity for good and evil, kindness and cruelty, lies in all of us, and within each of us is the capacity to choose what we will be.

Over the years, Schopler has come to understand that people are capable of both love and bestiality and that education may hold the best hope of promoting the idea that people can choose to live together peacefully.

“The thing that I learned is that when the thugs come to run the government  — and it doesn’t matter whether they are Fascists or Stalinist Communists or Nazis — when the thugs are in charge, things go bad for the people,” he said.

It was with this understanding that Schopler, 10 years after the end of World War II, returned to the little village where his family used go in the summer, where his father would hunt and fish and where Schopler and his little brother climbed castles.

It was on the occasion of his honeymoon that he and his wife went with another couple from the United States. He was not sure what he would find, or how he would feel toward the people he had left behind.

“I went back to this village and met those people who I had loved who had seemed not at all part of this political stuff,” Schopler said. “I got there and they embraced me. My friend, a fairly prominent academic guy from this country, was so distressed by my doing that, that he walked away from us. He couldn’t understand how a Jew could do that.”

What his friend could not see, Schopler said, was the difference between the personal and the political.

“At the political level you don’t know the individuals involved,” Schopler said. “It’s not personal and it can’t be personal. We try to act like we can love everybody in the universe equally. It’s impossible.

“I think ordinary people want to take care of people who are deprived or handicapped. We saw it in New Orleans. You’ve seen it in Africa — you can see it anywhere that people share the last little bit of what they’ve got. On the other hand, if they are filled with hate and the drive to conquer, then that impulse is not allowed to flourish.”

In his own work, in a different way, Schopler has done what he could to treat people with the dignity and respect he believes all people deserve. In the bigger scheme of things, that work may appear small. But the best we can hope for, Schopler suggests, is to do all that is possible to help the people within our own small circle of influence — and then do all that is possible to make that circle grow.

In this way, Schopler’s influence now encircles the globe.

Originally published by University Gazette: Oct. 5, 2005

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