"In science, a single observation may trump accepted truth . . ."
- Dr. Sidney Baker, introducing Elaine Gottschall at the Defeat Autism Now conference
Several months ago, Elaine Gottschall invited me to sit at her booth for the 2004 Defeat Autism Now conference (DAN) which took place April 15 through 19 at the Hilton Conference center in McClean, VA, twelve miles outside of Washington, D.C.
The following notes and observations are from and/or related to the conference. I attended for the chance to meet with Elaine Gottschall and Lucy Rosset*.
(* Lucy has been using the SCD for a decade years--another tale of diet sparing someone from the operating table.)
Background on DAN
In 1995, a group of thirty physicians and researchers, held the first Defeat Autism Now (DAN) conference in order to discuss treatment strategies. Approximately a year later they released their first publication, spelling out what would become the DAN protocol--biomedical methods for assessment and treatment of autism. Since then, the DAN conference has continued to meet at least once a year. As more people share information, the protocol has changed and the number of conference attendees has increased. Now the conference is held each Spring and Fall, with the latest taking place this past weekend in a Hilton conference center approximately twelve miles outside of DC. Instead of 30 people, 1,000 registrants attended, including 100 health care practitioners. Sessions lasted from Thursday through Monday with Saturday split into simultaneous sessions for doctors, parents, and nurses.
Diet and Autism
As far back as 19941, parents have implemented a gluten free/casein free diet (GFCF) in attempt to alleviate the symptoms of their autistic children. The resulting behavioral improvements led to the GFCF diet being adopted by the autism community2. As a result, it is also part of the DAN protocol. Indeed, a group of vendor booths at the DAN conference pitched everything from GFCF potato chips to gummy bears. However, although the GFCF diet has shown positive results for many, for others, improvement soon plateaus--or never comes.
More recent research3 has hinted at why GFCF has helped -- autistic individuals appear to have a leaky gut through which some proteins are inappropriately absorbed. Autistic indivudals suffer from bacterial and yeast overgrowth in the intestine. It is not uncommon for autistic children to have severe bowel problems--including chronic diarrhea and inflammatory bowel disease such as ulcerative colitis. Although the removal of these proteins can help, it appears from very recent research findings that healing the gut first will heal the leaky gut and prevent inappropriate proteins from crossing over the intestinal surface and activating the immune system.
Two years ago a group of mothers, with few options left, tried using the Specific Carbohydrate Diet to treat autism at the gut level. As with inflammatory bowel disease, the rationale of the diet remains the same: treat the carbohydrate malabsorption and bacterial overgrowth by eating what the digestive system is able to break down and absorb. This simultaneously nourishes the body and "starves" the harmful bacteria4.
I knew that the number of people using the diet to treat autism had steadily grown, with one e-mail list containing over 600 members but the DAN conference was my first "live" exposure . . .
DAN conference, Friday, 11am, Lobby of the Hilton Conference center
The conference sessions kicked off at 8:30am. Display booths from diagnostic laboratories and supplement companies dominate the hallway--full color, seven foot by 10 foot laminated displays with tables in front manned by sales reps--some dressed in suits, most wearing khakis and polo shirts emblazoned with their company names. Off of the lobby I locate a simple folding table manned by Lucy Rosset and Jody Goddard. Two sets of books sit on the table: Breaking the Vicious Cycle and Lucy's Specific Carbohydrate Cookbook. Besides the books are pile of xeroxed handouts containing the basics of the diet and web resources as well as notes from parents who have the SCD for autism. In back of us, Kirkland has set up a booth to sell GFCF food, including Just Pear--dried pears. To the side, an over-muscled rep and a waifish women pitch packaged GFCF food: chips, gummy bears, and soup.
I sit with Lucy. This is the first conference for both of us. I learn that earlier in the morning Dr. Sidney Baker, one of the conference founders, presented three case studies, including one of a long-time patient, Alex, "the kid who only got worse". In his talk, Dr. Baker extolled the SCD. During the last seven months, the kid who only got worse has been rapidly improving. Dr. Baker doesn't take the credit, saying Alex's mother tried the SCD diet as a last ditch attempt to help her son. The diet's effectiveness spurred Dr. Baker to prepare a lecture presenting his findings with Alex as well as two other children who have been doing remarkably well on the SCD.
I've only been exposed to the lobby and the room with vendor booths but I'm not sure where all the people are, there's only a few dozen registrants wandering around, identifiable by the plastic enclosed name tags hanging from their necks. One or two people at a time drift to the table, several buying books, all taking handouts.
"Hey! Aren't you going to say hi?" I turn around to see Elaine. Elaine greets me and gives me a hug. I glance over her shoulder, hundreds of people stream out of the now open-doored ball room. The room is huge, a hotel worker says it seats 2,000. I'm not sure if 900 registrants means 900 individuals or 900 families. Elaine asks if I heard Dr. Baker's talk. But our conversation is soon lost--the booth is surrounded. Elaine is in demand. People swarm around the table asking about the diet, buying books, asking questions. The next ninety minutes fly by, every ten minutes, a mother comes up, eyes tearing:
"I'm so happy! You helped my child so much! My child has become so much better. Thank you so much."
The exchanges usually end with a short question, a hug, a request for an autograph, and a renewed surge of activity--people huddling around the table. Not only has Dr. Baker talked about his success but these other mothers are coming up to thank Elaine. Lucy and I glance at each other, smiling. We're in the same boat, both saved from surgery, on the diet 10 years and 7 years, respectively.
Mothers aren't the only ones. Several health care professionals stop by. Most of them began researching or treating autism because their children have it. One, graying hair, clean cut, the straight shooter, thanks Elaine and has a few questions, setting a time to talk later. Another doctor, a jumpy dynamo, maneuvers in, and leans over the table toward Elaine. His opening is something we've heard several times now:
"I had never heard of your diet. But a patient tried it and the kid kept getting better. She gave me the book."
Now usually comes the "thank you", the brief emotional release. But not this doctor, he's smiling but a bit of envy crosses his face, "It's so simple! It makes so much sense! It's so clear! I don't know why I didn't think of it! I should have thought of it! It surprises me that I didn't simply see it! I should have done it!"
He moves on, replaced by a new type, identifiable by their T-shirts, the Doctor Moms. They're a group of mothers who began using the diet within the last year and have a local support group. Over their regular clothes, they wear over-sized T-shirts. The backs emblazoned with "SCD Works! Thanks, Elaine!" They move around with an assured look. As they come into contact with people, the people turn toward us and head to the table.
Elaine smiles, happy, perplexed. "I can't believe this. Is this really happening?" She almost didn't attend. She's been asked to conferences before for IBD, she's always had to defend herself, under attack by the gastroenterologists (GIs), by the IBD associations, by pharma lawyers. No matter how many people she's helped, the mainstream IBD community won't do research. However, a small but growing number of GIs have started to use the diet for their patients and even themselves.
Within the last two months, a doctor and a GI resident, both with IBD put in remission by the SCD, conducted a survey. They gathered the medical records of fifty people diagnosed with IBD who used the SCD. With this data, they submitted a concise article to the Lancet, asking for further research. But that's the exception, most GIs still deny that diet can significantly effect the state of the gut.
But at the DAN conference, the SCD and diet seems to be the talk of they day. Dr. Baker's presentation, the Doctor Moms, the moms who found the diet on their own, the doctors and nurses buying the book. . . and the conference is just getting started. Tomorrow, Pamela Ferro will be speaking at the Nurse's Training. She's a no nonsense RN with an autistic child who was helped by the SCD. Now Ms. Fero runs a private practice treating autism with the SCD. Her growing practice now employs someone in the Cape Cod area as a fulltime cook--helping the mothers get started with the diet.
Lucy and I are working fast to keep books in stock. I'm already opening new boxes under the table. After lunch, the pace continues, with the crowds surging out during session breaks.
At the table, we're under the skylights, square glass panels rise upwards, forming a pyramid-like dome over our heads. The sun's heat magnified, coming straight down on us. But we barely notice. During lulls, Lucy and I exchange notes on the diet and our experiences with colitis, and, I listen to her stories about selling her cookbook on her website. To order you call a toll free number, which rings at Lucy's house. She spends at least twenty hours a week on the phone, taking orders, answering questions, dispensing advice. I'm surprised to hear about the people who call, from all over the country, from all over the world.
Dan Conference, Friday 6:30 pm, Hilton guest room
Dozens of people gather in Dr. Baker's suite. I recognize several of the Doctor Moms. Name tags identify another doctor, several nurses, a nutritionist with a master's in public health. A bartender takes breaks to circulate around the room, a platter of SCD hors d'oeuvres in her hand.
Dr. Baker bangs on a glass to get attention. We're here to celebrate, to thank Elaine. But first he introduces Judy Gormand, the mother of ten-year old Alex, the "kid who only got worse", Dr. Baker's most challenging, unresponding patient. The room quiets, the facts striking as she tells Alex's story:
Seven years of diarrhea. Doctor after doctor. The DAN protocol backwards and forwards. Chinese medicine, cranial sacral therapy, flying to Ireland twice to see a healer. In the summer of 2002, Alex developed self-abusive behavior, scratching, biting, banging his head against the wall. Always covered in blood. Beginning to smash things, the remote control, then the phone, the TV, glass. After five years of doctors someone scoped him. Diagnosis: colitis and cryptitis. Prednisone stopped the self-abuse, helped the gut heal. But he couldn't get off the drugs. Cutting down, getting nearly off, meant going to the toilet 15 times a day. He ate one meal every other day. Always sick. Teachers said they couldn't teach him. He was in too much pain. He couldn't stay still. "All we can do is try to make him comfortable in class." In September 2003, the doctor said he had to get off the prednisone. He risked developing steroid psychosis.
Hands holding drinks drop to people's sides. Judy continues. "I was ready to take him, hold onto him, and jump off a bridge, end the pain for both of us."
Sitting in the house, in despair, she scanned the bookshelf. She saw Breaking the Vicious Cycle, a book bought five years ago, on the advice of a woman whom she ran into at a DAN conference. She opened the book and read. And read. That night, she started Alex on the Specific Carbohydrate Diet.
Seven months later. Alex is off of all meds. He has 1-2 bowel movements per day. Hyperactivity gone. He can sit still. Learning has increased. Teachers awed . . .
The room, the expensive suite, we are all in tears. Judy presents a plaque to Elaine, the 83 year old fireball is speechless. We all applaud.
Dan Conference, Saturday morning, Hilton conference center
Lucy, Jody, and I keep the table operating as a steady stream visits. Two of us are there at any time. During one break, I peak in at a session, a doctor drones on about vitamin this and that, each supplement description starting off with statistics:
"It helped 51% of the patients, for 43% it had no effect, and 6% become worse."
Twenty supplements, similar stats. What do you do? Try one at a time? Take everything? What happens when you mix supplements? I watch hundreds of parents scribbling desperately in their notebooks. No wonder the Doctor Moms look ecstatic at finding something that helps their children. Every parent here is halfway to being a biochemist and part way to bankruptcy--supplements and diagnostic tests don't come cheap. But that doesn't matter, you can see it, the concern. For each family at least one child's health is at stake. Coming to DC for the weekend, paying hotel fees, conference fees, buying books, supplements, talking, talking, taking notes, learning from other parents, from the doctors. It's all worth it for even a little improvement. The doctor continues.
"For CoEnzyme Q, we found that it . . . "
I head back to the table.
Lucy ran out of her cookbooks about an hour ago. She's been keeping track of orders on slips of papers, dispensing cooking advice, addressing patients questions about dairy. Less than half a dozen copies of Breaking the Vicious Cycle remain. Within 20 minutes, the rest are gone. Even the one display copy we keep has been claimed and paid for--to be picked up at the conclusion of the conference.
The diet seems to be the talk of the conference. More evidence comes from a supplement vendor, they approach the table twice, asking to "be taken off the list". It turns out that their product contains ingredients not allowed on the diet. Someone posted this information to an autism e-mail list. They want our group, sitting at the bare fold out table, to endorse them. They man a flashy display booth which probably cost more than a used Honda. The vendors ask politely, they plead, they look angry, but the diet does not change. Elaine has spent the day attending sessions but during breaks she's also been approached by supplement sellers.
"I empathize with these people. They're trying to make a living. I just wish they sold refrigerators instead."
People still come to the table. Information hungry. I catch another vendor watching us, arms folded. Unhappy. Not many people come to his booth--his firm's products wouldn't be allowed on the diet. A few other vendors pick up the SCD informational hand-outs, sit at their booths, and read.
The day ends well. Lunch out in the sun. Dinner with Elaine and Lucy. Elaine happy but worried about her voice, she's been talking non-stop. Although she's been attending sessions as a listener, people keep asking questions. Tomorrow she's scheduled to speak at 8:30 am.
DAN Conference, Sunday, 8:05 am, main lecture room
Yesterday three sessions ran simultaneously. Today, everything is in the big conference space. I go early to mark a seat. A few dozen people are stand in the room, scattered. The place can hold well over a thousand and it seems empty. A man with a press badge and a camera stands in the back. He's saying something about Elaine, how well she spoke at the Nurse's Training the day before. Elaine went to listen to a session but so many people wanted to ask her questions, they called her up to speak on the panel.
By 8:30 the room is packed. I had also saved Lucy a seat in the front. One of the conference heads starts off, followed by Dr. Baker who starts:
"In science, a single observation may triumph accepted truth . . ."
He goes on to tell the story of the coelacanth, an ancient fish believed to have died off 70 million years ago. It was a scientific fact--until someone caught one off of the South African coast. He leads into autism and then introduces Judy, Alex's mother. She talks about Alex, the autism, colitis, cryptitis, self-destructive behavior, always bleeding, the whole thing. When she finishes, the room sobs.
"I'm up here today because I don't want anyone to go through what we went through . . . Elaine is the ultimate mother hero . . . She did whatever it took to heal her daughter . . ."
People wait anxiously, wanting to hear what she has to say. She tells her story.
The daughter with ulcerative colitis who saw every doctor in Manhattan. No hope. Age eight, right before the operation, her daughter waiting on a gurney. A doctor walking by looks at Elaine, stops.
"What are you so upset for? Well, why are you upset, you're the one who did this to your daughter."
Angry. Flustered. Depressed. She took her daughter home. A friend planned to come that night to comfort her. On the way up the stairs of Elaine's apartment, the friend ran into an acquaintance. They talk. The acquaintance says, "She should talk to my friend whose two celiac twins were cured."
Within 48 hours of this chance meeting on a staircase, Elaine was in the office of Dr. Haas with all of her daughter's medical records. After that the story becomes familiar. Daughter placed on diet. Daughter completely regains health.
Dr. Haas was in his nineties and passed away not long after. In the library, Elaine finds books talking about certain foods which shouldn't be given with upset intestines--such as milk. None of the other city doctors mentioned anything about food. And here it was, in books, some dated before 1900. Why wasn't food a consideration when treating ulcerative colitis? Elaine's husband Herb appraises the situation.
"I'm able to make a living for us. You'd better go out there and find out what happened."
That's when Elaine went back to school and picked up the thread of knowledge which she has been passing on for forty years. Forty years!! And only now beginning to get serious attention. I asked her about how she did this for so long.
"There's only one way to go once you get on that trail."
Her presentation moved to the science, to the two big screens, one on either side of the podium, showing a Powerpoint presentation. The microscope showing the injured intestine versus the healthy intestine. The line diagrams in Breaking the Vicious Cycle coming to life. The thick mucosal layer looking more threatening than Shelob's web in Lord of the Rings. The science given dramatic photos.
When she finished, all rose for a standing ovation. Later, after the presentation, a woman, attending the conference for the sake of her autistic child, told us how her husband, a doctor, had decided to treat autism full time.
As the next speakers started, Lucy, Elaine, and I stole away to the restaurant, for a celebratory drink.