By DAN OLMSTED, UPI Senior Editor | Nov. 9, 2006 at 7:37 PM
WASHINGTON, Nov. 9 (UPI) — Does it matter that Donald T., the first child diagnosed with autism in the 1930s, also had a rare and mysterious autoimmune disorder that nearly killed him?
The disorder, called Still’s disease, is a systemic form of juvenile rheumatoid arthritis (JRA) in which the immune system inexplicably attacks the body. The cause is unknown but might be some kind of outside exposure like a virus, experts say.
As I’ve noted before, both Donald’s arthritis and his autism appeared to improve significantly after treatment with gold salts, then a standard remedy for JRA. But doctors at Johns Hopkins Hospital, where Donald and 10 other children were first diagnosed with the distinct disorder called autism, never seemed to notice the possible connection.
They credited gold salts with curing his JRA. But they believed the improvement in his autistic symptoms was due to an unlettered but loving farm couple Donald went to live with near his hometown in Mississippi — at their suggestion. The clear implication was that Donald’s own parents — his father was a “brilliant” Yale-educated lawyer — might have contributed to his autism through poor parenting or some other family dynamic. That kind of mistaken (and fundamentally arrogant) assumption has haunted the search for autism’s cause ever since.
But back to Still’s disease, which beset Donald in 1947 when he was 12 years old and living with that farm couple. According to my interview with his brother in 2004, Donald’s sudden illness was so baffling that even the Mayo Clinic couldn’t diagnose it. Instead, a doctor in a nearby town finally suggested JRA based on a conversation with Donald’s father, who told him, “It looks like Don’s getting ready to die.”
Here’s how Leo Eisenberg of Johns Hopkins described it in the 1956 scientific paper I recently came across:
“The (farm) boarding arrangement had to be terminated when Donald … developed an undiagnosed illness manifested by fever, chills, and joint pains. He became bedridden and developed joint contractures. On the basis of a tentative diagnosis of Still’s disease, he was placed empirically on gold therapy with marked improvement. …
“The clinical improvement in his behavior, first observed during his rural placement, was accelerated during and after his illness and convalescence at home. He was able to enter and graduate from high school. At present he is doing well in his studies at a Junior College, where he was elected a class officer. He plans to attend a small local liberal arts college.”
Put aside the glaring lack of interest in gold salts’ possible impact on Donald’s autism, and focus instead on how strange this situation was.
Because Donald’s was the first case of autism ever formally diagnosed, trying to estimate its prevalence at the time is no easy thing. Suffice it to say that autistic children were rare; let’s use the widely accepted early figure of 1 in 10,000 children (it’s more like 40 per 10,000 today).
Now, how rare is Still’s disease? It looks to be even rarer, but for simplicity’s sake let’s put it at 1 in 10,000 as well. Doing the math — 10,000 times 10,000 — suggests that having the two separate disorders just by chance is a 1-in-a-billion shot. Effectively, Donald would have been the only person in America in 1947 who just happened to have both.
And on top of that, he’s autism’s Case 1?
Oh, brother. This does not compute. In search of answers, I went back and looked up Still’s disease. It’s named for Sir George Frederic Still, an English physician who first described it in 1887. One of the characteristics was a peculiar, transient “salmon-pink” rash.
That reminded me of something — Pink’s disease. Pink’s (also called Pink) was a mysterious and sometimes fatal affliction in children: “The symptoms include weepy red rash, peeling skin, lethargy, anaemia, sensitivity to light, respiratory distress and general ill health,” according to the Pink Disease Support Group. Other sources refer to the “joint pains.” It’s fatal in about a quarter of cases.
And what caused Pink’s?
“Pink Disease is babyhood mercury poisoning. Some babies are hyper-sensitive to mercury, and if those babies are exposed to mercury, they get Pink Disease. The most commonly used product containing mercury was teething powder, but other products frequently used on babies also contained mercury.
“After it was discovered that mercury was the cause of Pink Disease in 1947, mercury was removed from all teething powders and Pink Disease became rare.”
An intriguing article from 1943 in the Journal of Pediatrics is titled “Pink Disease (Infantile Acrodynia),” the formal name of the disorder. One section begins, “The Nervous Child and Pink Disease. — The manifestation of pink disease in older children … has received comparatively little attention by the English-speaking word. …
“It is of interest that such children as these are disturbed emotionally; they are ‘nervous children’ and … they conform to the ‘nervous child’ syndrome. “
“The nervous child.” I can’t help but remember that the first scientific report of autism, by Leo Kanner at Hopkins, was in a journal called … The Nervous Child. Nor can I forget how Donald’s brother described the impact of the gold salts: “The nervous condition he was formerly afflicted with was gone. The proclivity toward excitability and extreme nervousness had all but cleared up.”
It was, he said, a “miraculous response to the medicine.”
I’m not suggesting Donald had Pink’s disease. But I do wonder if his remarkable recovery across the board should have raised a lot more questions a long, long time ago.