Note: This post is a pre-cursor to last week's SCD seminar.
Pam Ferro's voice mail will not accept any more calls. Emails bounce back, saying her in-box is full. Currently, her active patients number over 200. The wait list continues to grow, but she cannot work longer hours. Treatments take patience and cannot go faster. Despite Ferro's requests for assistance, little help has emerged from the mainstream medical community. Ferro, a nurse based in Mattapoisett, Mass., treats autism spectrum disorder by using diet.
Autism spectrum disorder (ASD) now affects 1 out of every 150 children in the U.S., according to the Center for Disease Control. Children with ASD exhibit symptoms that vary greatly, from delays in learning language and lack of social range interaction to becoming withdrawn and self-abusive. Within mainstream medicine, there is no known cure. The only well-studied treatment consists of teaching behavioral skills.
Many parents run out of conventional options. One of them, Desiree Winterhalter, was given Ferro's contact information after a chance conversation in a health food store.
At age 18 months, Winterhalter's son Max stopped remembering his numbers and colors. He suffered from diarrhea and vomiting. At age two, his cognitive development halted; he also stopped growing. His doctors labeled Max "FTT": failure to thrive. None were able to help.
Winterhalter says, "I was desperate. Something was changing with Max. He was a mild-mannered toddler but he began having tantrums, picking up toys and throwing them. Max has two older brothers and I knew this wasn't normal behavior."
In Ferro's experience, Max's loss of skills, changes in manner, and digestive problems fit the profile of a child beginning to show symptoms of autism spectrum disorder.
Ferro showed Winterhalter how to change Max's diet. Within a month of feeding Max specific foods, he woke one morning and said, "Mommy, I don't have a tummy ache." Max soon re-learned his colors and numbers. Now, at age eight, Max is back on the normal development schedule, and above average in his class.
Desiree says, "I attribute Max's recovery completely to diet."
However, for mainstream medicine, dietary treatment of ASD is fraught with controversy. Doctors and researchers disagree on whether people with ASD have gastrointestinal issues. In addition, the medical community labels ASD as a neurological disorder--not something that diet can help.
Yet Ferro notes that her ASD patients have some type of digestive issue, ranging from constipation to colitis. To treat these problems, she uses the Specific Carbohydrate Diet, or SCD. Originally created for celiac disease and inflammatory bowel disease, the SCD eliminates most complex carbohydrates and processed foods.
Ferro says, "On the SCD everyone does better: we are even seeing a response in teenagers and adults. We see improvements in language, cognition, behavior, mood, sleep, and of course bowel function."
According to Breaking the Vicious Cycle, Elaine Gottschall's book about the SCD, specific carbohydrates are not digested properly, leading to bacterial overgrowth and in turn the production of acids and gas. As Ferro explains, "These intestinal conditions result in a leaky gut and contribute to intestinal damage and behavioral changes."
However, without definitive studies, doctors will not accept the idea of diet influencing autism. Autism Speaks, an advocacy group that funded $36.6 million in autism research in 2008, has started to studies to address the issue.
Marianne Toedtman, the Assistant National Director of Outreach and Resources for Autism Speaks, says, "Parents for many years have been saying of their children: 'He has diarrhea.' 'He doesn't have bowel movements.' 'He holds his stomach all the time'. Doctors have never been able to diagnose the situation. There is a concerted effort to understand this more and validate it."
But Ferro will be waiting a long time for validation of the SCD. Study results will not be available for years. In addition, dietary studies are focusing on the gluten-free/casein-free diet (GFCF), a diet well known in the autism community through advocates such as Jenny McCarthy. The SCD used by Ferro is more restrictive than the GFCF--removing more carbohydrates as well as all additives. No one currently has plans to study the SCD.
Dr. Martha Herbert, a pediatric neurologist and assistant professor at Harvard Medical School, agrees with Ferro's approach. She says, "I've seen the SCD working for kids with autism and other diets too. I'm not ready to weigh in on one diet being 'the one.' However, we're missing a very big boat in terms of what can help people because of a dismissive attitude toward dietary intervention."
Ferro doesn't want others to miss that boat. Her own son, 17-year-old Isaiah was diagnosed with regressive autism as a toddler. He lost eye contact and the ability to verbally communicate. He suffered from diarrhea and constipation. One year he missed 50 days of school due to severe abdominal pain.
After he started the SCD in 2002, Isaiah's digestive issues cleared up within one week. As the months progressed, Isaiah became calmer, happier, and able to participate socially in school. This year, Isaiah's seventh on the SCD, he gained entrance to a competitive music special program for autistic children, playing piano at the Boston Music Conservatory.
Despite success, Ferro cannot handle any more patients because the SCD diet takes time to introduce. Autistic children are notoriously picky eaters. Their diets consist of few foods. They may avoid certain foods due to color, texture, or both. Many parents lack confidence to even attempt dietary changes.
Ferro says, "Having one child with autism is like having six children. Parents usually have to oversee their school programs and therapy while trying to manage their minute-by-minute care. These families are struggling on every front and we tell them, 'Change the way you eat'--and these are kids who don't eat."
To introduce the SCD, Ferro has long conversations with family members on how to transition. She helps parents read through Breaking the Vicious Cycle, the book that explains the diet. They take time to look at recipes, buy the ingredients, and finally spend a day cooking. In addition to the diet, she may include supplements for conditions such as clostridia, yeast overgrowth, or vitamin deficiencies.
Ferro says, "Introducing the SCD may take weeks if not months. But the children respond so beautifully that parents see it is worth the effort."
Despite lack of mainstream support, Ferro remains determined to share her clinical knowledge. She has prepared educational materials for other nurses and taught at autism conferences. Ferro says, "I just did a program for nurses at New Hampshire's Saint Anselm College."
Locally, Ferro has enlisted parents of former patients to assist families new to the diet. Jill Rainville, whose son was helped by the SCD, visited the kitchens of several local families to demonstrate cooking.
In 2006, to help with SCD outreach, Pam Ferro founded a non-profit, the Gottschall Autism Center. The board members of the Gottschall Autism Center include three doctors, two nurses, and two lawyers, all of whom have been touched by autism through a child or relative. All of them have been helped by Ferro.
In May, the Ronald McDonald House Charity awarded the Gottschall Autism Center a $10,000 grant to prepare a seminar for parents of autistic children. Scheduled for October 2, Pam and eight volunteers will host the seminar at Rachel's Lakeside, a banquet facility located in Dartmouth, Mass. Ferro hopes to teach over 100 people how to use the SCD.
To accomplish this, the seminar organizers will be taking over the kitchen at the facility. All of the food, from soups and chicken to banana breads and snacks, will follow SCD guidelines. Part of the presentation will be a movie of four local families using the SCD: going into their homes, seeing them cooking for their kids, listening to their suggestions.
Pam says, "Our goal is that when they leave the seminar, they will understand the diet. We want them to smell it, touch it, and taste it. We'll show them how to be organized so they can use it at home." Pam's group wants the families to leave armed with information and to feel confident that they can use the diet.
Until a few years ago, few methods existed to treat autism. Now, though, diet can help. Pam says, "The nice thing about SCD is that parents don't need intense treatment where they give their kids IVs and drugs and frequent lab work ups. It is just food. You can get your kid 90 percent better just by changing his or her diet."