The Age of Autism: Case 1 revisited

By DAN OLMSTED, UPI Health Editor   |   Aug. 15, 2005 at 9:45 AM
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The first person ever diagnosed with autism lived in a small town in Mississippi. He still does.

"Donald T." is now 71, and after a "miraculous response" to medical treatment at age 12, he appears to have recovered significantly since his original diagnosis as a 5-year-old.

His improvement is so striking, in fact, that it raises new questions about the disorder and its treatment.

Donald went on to graduate from college, where he joined a fraternity. He worked as a bank teller and belongs to the Kiwanis Club. He owns a handsome house with a large well-tended yard, drives a car, plays golf several times a week and travels the world solo. Recent itinerary: Rome; Palermo, Sicily; Corsica and Sardinia. This past weekend he was returning from Branson, Mo.

In short, he doesn't seem terribly autistic anymore.

"It sounds like he moved right off the spectrum," said one doctor whose practice includes scores of children with autism.

The treatment Donald received in 1947 was not intended to help his disorder, but to save his life. Donald had come down with an uncontrollable fever, stopped eating and had severe joint pain and stiffness that was finally diagnosed as juvenile arthritis, a rare autoimmune condition. Such problems occur when the body's own defense mechanisms go haywire, in this case causing inflammation that was destroying his joints.

After being treated for several months with gold salts -- then the standard therapy and still in use -- not only his arthritis but some of his most disabling autistic traits cleared up simultaneously.

We learned all this after we determined Donald's identity and that of his brother, whose law office is on the second floor of a building across the town square from the courthouse. The brother, although understandably taken aback when we showed up last Friday, was cordial and said he didn't mind being quoted by name, but because Donald has not responded to our request for an interview -- and we do not wish to intrude on his privacy -- we decided not to identify the family or the town at this time.

Medical researchers certainly know where to find Donald -- his brother said Johns Hopkins University medical personnel check in "about once a decade" to observe Donald's progress. It is not clear whether anyone at Johns Hopkins, where Donald was diagnosed, ever considered whether his striking improvement was related to the gold-salts treatment.

Upwards of a quarter-million U.S. children have autism, and diagnoses are rising. The cause is unknown. Medical groups and federal health officials have dismissed the "biomedical" approaches being tried by some parents and doctors as unproven and irresponsible.

"You have to keep in mind that the history of medicine is strewn with discarded treatments that people at one time believed in very, very strongly," Dr. Harvey Fineberg, president of the Institute of Medicine, said on NBC's "Meet the Press" earlier this month in response to a question about those treatments.

Such an approach, however, appears to have made the difference for Donald, at least according to the brother, who is his closest living relative -- and who was clearly unfamiliar with the current debate.

Donald's parents took him to Johns Hopkins in Baltimore at age 5 in 1938 to be evaluated by Leo Kanner, the leading child psychiatrist of his day. Kanner realized that Donald's behavior syndrome -- which included repetitive actions, limited and odd use of language and profound social disengagement -- was "markedly and uniquely different from anything reported so far."

Over the next four years Kanner saw 10 more such children, and in 1943 he published their case histories in a landmark paper titled "Autistic Disturbances of Affective Contact."

"There was a marked limitation of spontaneous activity," Kanner observed about "Case 1, Donald T."

"He wandered about smiling, making stereotyped movements with his fingers, crossing them about in the air. He shook his head from side to side, whispering or humming the same three-note tune. He spun with great pleasure anything he could seize upon to spin."

He also had what would prove to be characteristic speech patterns of autism, including affirmation by repetition. For example, if he wanted to get down after his nap, he said, "Boo (his word for his mother) say, 'Don, do you want to get down?'" Yet he could recite 25 questions and answers of the Presbyterian catechism and had perfect pitch (he still does).

In our interview, Donald's brother outlined what happened after Kanner's diagnosis.

"My brother was extremely nervous and excitable. Dr. Kanner, when they took Don up there, told my mother and father that the treatment he was going to recommend was, if they knew a couple out in the country -- a childless couple -- in his opinion (having Donald live with them) would be the best thing that could happen."

They found such a couple, and Donald began living on a farm about 10 miles from town in 1944, when he would have been 9 years old.

"In 1947, one February day I think it was, they came to (town) with Don. He had a bad fever and was obviously sick. My father and mother took him to all various places for examination -- they went to the Mayo Clinic, brought him back."

Because Donald's family was affluent -- his father was a Yale-educated lawyer -- they could afford the best doctors and knew where to find them, but nothing seemed to help.

"He lost his appetite and was terribly emaciated," his brother recounted, comparing his appearance to a concentration-camp survivor. "But anyway, my father was talking to a doctor (in a nearby small town) he happened to run into." He told the doctor, "It looks like Don's getting ready to die."

That doctor, without having examined his son, said, "What you're describing sounds like a rare case of juvenile arthritis."

Armed with that tentative diagnosis, his parents took Donald to a clinic in Memphis, where they "began to treat my brother with gold salts for 2 to 3 months."

The results were spectacular.

"He just had a miraculous response to the medicine. The pain in his joints went away." Donald has one fused knuckle to show for the nearly fatal affliction.

There was more good news.

"When he was finally released, the nervous condition he was formerly afflicted with was gone," his brother said. "The proclivity to excitability and extreme nervousness had all but cleared up, and after that he went to school and had one more little flare-up (of arthritis) when in junior college. They treated it with cortisone."

The interview with Donald's brother significantly adds to the information known about him and establishes a new timeline -- one in which the gold-salts treatment now appears to be a pivotal but previously undocumented event.

In a 1970 letter cited by Kanner, Donald's mother mentions "he had an acute attack of rheumatoid arthritis in 1955. Fortunately, this lasted only a few weeks. Physically, since that time he has been in perfect health. ... Since receiving his AB degree in 1958, he has worked in the local bank as a teller."

She was evidently describing the "one more little flare-up" that Donald's brother described as occurring in junior college. We found no reference in Kanner's writing to the life-threatening first onset of juvenile arthritis at age 12 or to the treatment that followed.

Instead, Kanner attributed Donald's standout success in later life -- most of the 11 initial patients were ultimately institutionalized or lived in extremely sheltered circumstances -- to the couple with whom he stayed for those four years.

Kanner wrote in 1971:

"Donald, because of the intuitive wisdom of a tenant farmer couple, who knew how to make him utilize his futile preoccupations for practical purposes and at the same time helped him to maintain contact with his family, is a regularly employed bank teller; while living at home, he takes part in a variety of community activities and has the respect of his fellow townspeople."

Yet, in our interview, Donald's brother cited the medical treatment and said it made a permanent difference in Donald.

"It sure did," he said. "He became more social," noting that just a few years later Donald was asked to join the college social fraternity, whereas people with autism are prone to isolation and do not usually acquire friends.

Would he call his brother autistic now, we asked? "It's just in certain areas," he said, citing a total lack of interest in dating or a life companion.

Donald's transformation, his brother said, "is the most amazing thing I've ever seen."

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E-mail: dolmsted@upi.com

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