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August 15, 2005
By DAN OLMSTED
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."
E-mail:
dolmsted@upi.com
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