What exactly do worms have to do with autism? Good question.

As faithful readers know, in the first of my many previous lives I was occupied as a clinical psychologist (preparation for dealing with engineers [ain't it the truth - and I'm an engineer - ed.] on a full time basis in my current life). My training was heavily focused on autistic children at a time when the autism diagnosis was very new, and I remain to this day aware of many of the treatment modalities for the illness. When I came across the article that used the phrase "worms" and "autism" together, I was hooked.

The true story is about a family at wits end with an autistic teenager, a near-adult child who had descended into physical self-abuse, violent behavior, and the very real possibility of accidental death. The father, Stewart, began a systematic study of anything, including alternative therapies, that might have helped. Having tried everything from anti-psychotics to behavioral therapy to no avail, his thorough Internet search provided a glimmer of hope. Here is a lesson to be learned: It was a glimmer he could see that no one in the field of Autism research recognized.

The glimmer was work by a team of researchers at the University of Iowa on Crohn's disease. Students of the autoimmune disease noted epidemiological evidence that people who emigrated from an undeveloped area such as India, where the disease is unknown, to the developed world (specifically, the U.K.) faced a serious and significant increase in the probability of developing Crohn's. In addition, in the U.S., studies on children living in rural southern states where pig farming is common -- as are the worm infections that come from living close to them -- epidemiologists found no bowel disorders. As programs were implemented to stop the worm infections, autoimmune diseases became far more prevalent.

The great breakthrough came from wondering if, instead of looking for something in the environment that caused the disease, scientists should be looking for something that was missing, something that allowed the disease to thrive with its absence.

Armed with an assortment of indirect pointers, specifically an experimental treatment in Iowa that involved ingesting the ovum of porcine tapeworm, as a possible remedy for Crohn's disease and ulcerative colitis, the father wrote a medical white paper that piqued the interest of researchers in his area. After spending years working with the FDA to obtain the permission to perform a clinical test on his son, the ovum were obtained and ingested. After a false start, the dosage was adjusted and within ten weeks the results were in. Obviously, I don't have to go into details of the complete remission of symptoms; I wouldn't be writing about it if it didn't work famously. I will simply report that the autistic behavior simply went away.

But that is only part of the story. The story of the initial failure is interesting in its own right. It illustrates how failure of an experiment does not necessarily mean failure of an idea.

After obtaining permission to administer the treatment from the US Food and Drug Administration (FDA) under "compassionate use" rules, Stewart and Hollander navigated customs protocols to import OvaMed's formulation of T. suis ova, called TSO. They had Lawrence drink a solution containing 1,000 of the roundworm eggs every two weeks for 5 months beginning in early 2006.

The results were beyond disappointing. Lawrence's aggressive and agitated behaviors abated for just four days during the entire 20-week treatment period. "There were only those four days," Stewart recalls. "Each day subsequent, he went right back to his old self."

Stewart started looking at residential schools where Lawrence could live under the constant supervision of healthcare professionals. "We couldn't live like that anymore. We were at our wit's end," he says.

But when Stewart contacted OvaMed's president Detlev Goj to inform him of the dispiriting results, his hope was renewed. Goj told him that Lawrence's response to the low dose of worm eggs--1,000 ova every two weeks as opposed to 2,500 in the promising Crohn's and ulcerative colitis trials--actually fit the profile of a potential responder. He recommended that they give Lawrence 2,500 eggs every two weeks for a period and see what happened. Stewart relayed the information to Hollander, and they prepared to conduct another trial, this time at the full dose.

The Johnson family anxiously awaited the effects of the full dose of TSO on Lawrence's violent behavior. Within 10 weeks of the higher-dose treatment, the autistic boy stopped smashing his head against walls. He stopped gouging at his eyes. The paralysis and frustration that held him and his family prisoners in their own home lifted. The freak outs ceased. "It wasn't gradations," remembers Stewart, who had always kept meticulous notes on Lawrence's disorder and the interventions they had attempted. "It just went away. All these behaviors just disappeared." Elated, Stewart called Lawrence's doctor, Eric Hollander. "He was stunned, because all of that behavior set was gone," Stewart says. "He was speechless, as I was."

Hollander and Stewart recognized the potential importance of Lawrence's reaction to TSO, and after a year or so of closely monitoring the boy's progress, the researcher asked Stewart to present their findings to his colleagues at the Seaver Autism Center during its annual conference in 2007. Stewart did so, and the team at the research facility, one of the most prominent in the nation, was intrigued. "They were very impressed," Stewart recalls. "It was very well received."

There are a lot of interesting points in the comments. I liked this one.

helminthic therapy by Herbert Smith

[Comment posted 2011-01-31 23:17:46]
I wonder why Stewart Johnson doesn't try the longer living hookworms (Necator Americanus) and whipworms (Trichuris Trichiura). They are harmless in small numbers, don't reproduce inside the host either but they live between 2 and 5 years, so the child would not have to take TSO every 2 weeks and it's significantly cheaper.

I was able to put my severe Crohn's disease in remission by getting both of these organisms.

You should also check out Worms Schizophrenia.

Cross Posted at Power and Control