Wampum

Hope, Buzz and Secretin

The autism community received some bad news last week when it was announced that the clinical trials of secretin as a treatment for autism produced no greater benefit than a placebo.

That news was not particularly surprising as previous studies had failed to show any benefit to from secretin therapy (links via Derek Lowe who has an excellent post on the subject).

With regard to the story of secretin in the autism community, the Times knows the words but does not have the melody:

In 1996, Parker Beck, an autistic boy in New Hampshire, was given secretin to help diagnose gastrointestinal problems, which afflict many children with autism. His mother, Victoria Beck, soon noticed an improvement in his development and began to suspect the secretin.

When the Becks tried to obtain more treatments for Parker and his medical records from the University of Maryland, where he had the diagnostic procedure, they were rebuffed, Mrs. Beck said. The family then learned that the university was applying for a patent on using secretin in autism. When the Becks told the university their history, the university listed her as an inventor and assigned her the patent rights. She in turn licensed them to Repligen, whose president, Walter C. Herlihy, has two autistic daughters.

The news was reported on television and in newspapers in 1998 and 1999 and led to a flurry of interest in secretin. Some parents obtained the version for pancreatic disorders. Some ordered it from overseas.

A “flurry of interest in secretin” does not do justice to the reaction of the autism community to the news reports about secretin.

My son was diagnosed in 1997. At that time, all I knew about autism I had learned from Rainman, and I had never heard of secretin. That quickly changed.

By 1997, secretin had taken the autism community by storm. It was the miracle that was going to save our kids. The vendor sections of various autism conferences were filled with people selling secretin in vials, secretin in lotions, videotapes about secretin therapy, books about it, advice on the dosages and number of treatments and various other items. Numerous people were claiming complete cures. Children who had never spoken before, were said to have been given a shot of secretin and on the way home had calmly said, “Mother, what are we having for dinner tonight? I may be in the mood of pizza.” No claim of the effectiveness of secretin was too outrageous to be believed.

At an autism conference I attended, a researcher noted that the evidence to support the buzz did not yet exist. He was booed as roundly as a stock analyst in 1998 suggesting that dotcoms be avoided until they had earnings.

I do not have the words to adequately describe the buzz that surrounded secretin within the autism community. Remember the buzz about Segway before it was revealed to be a scooter too complex for George W. Bush to operate? That was a slight murmur compared to the buzz generated within the autism community by reports about secretin.

Human secretin, swine secretin, herbal secretin (which as far as I can tell is an oxymoron) and synthetic secretin were all hawked relentlessly to the parents of autistic children. The price of secretin skyrocketed. People were paying $2,000 for an amount of secretin that before the buzz had cost about $30. It is not an exaggeration to say that parents were mortgaging their homes to purchase secretin for their kids. We now know that a sugar pill would have been equally effective.

Please note that all of that buzz was generated by the fact that a few autistic children had improved after being given secretin for digestive problems. The autism community could not wait for double blind and placebo tested trials. We wanted our miracle and we wanted it now.

How could so many people be so willing to believe in a miracle cure based on so little evidence? I know some of those people. They are not stupid or ignorant. They are bright people with advanced degrees, good jobs and an understanding of the scientific method. They also have autistic children.

They bought the buzz and, in some cases, bought the secretin at exorbitant prices because secretin represented hope. They desperately needed hope and they had no other place to turn to find it. The hucksters were selling hope and were willing to charge all the market would bear.

It is not just secretin that is sold as a proxy for hope. From where I sit writing this, I can look at part of a bookcase. From here, I can see literature about secretin, ABA, holding therapy, Son Rise, play therapy, sensory integration therapy, horseback riding therapy, auditory integration therapy, glutton/casein free diets, the TEACHH program, the picture exchange communication system, vitamin therapy and Lovaas. A lamp blocks my view of the rest of the literature. I think some of those therapies are useful and others are shams. Secretin may yet be shown to help a sub-group of autistics. None are miracle cures. The one common characteristic of those therapies is that they offer some measure of hope to a desperate group of people.

Last summer, Pat Cooper, the mother of Torrance Cantrell, helped members of her church hold down her eight year old autistic son during an exorcism. The exorcism was supposed to drive the autism demons from his body. The church members sat on Torrance, compressing his chest until he was no longer able to draw breath. He died during the "service."

Ms. Cooper did not want to harm her child. She permitted and participated in the the exorcism because it offered hope, she needed hope and hope was not available from any other source.

The secretin story is really no different.

Posted by Dwight Meredith at January 13, 2004 01:08 PM | TrackBack