A gut reaction: Conference to explore intestinal health and its effect on autism

A gut reaction: Conference to explore intestinal health and its effect on autism
By ALEXIS HAUK
ahauk@s-t.com
March 24, 2011 10:50 AM

Chances are, you've heard the statistics: 1 in 110 children have an autism spectrum disorder, according to the Centers for Disease Control and Prevention. The estimated lifetime cost of caring for someone with autism is $3.2 million.

But on April 1 in Dartmouth, a group of nationally recognized experts will assemble for the Gottschall Autism Center's conference to address a potential intervention method you're probably not as familiar with. The conference, titled “When the Belly is the Beast: How Intestinal Health Impacts Brain and Behavior,” will explore nutritional and biomedical approaches to treating autism.

“A few years ago, dietary intervention was really looked down upon by doctors. False hope and garbage like that,” says Wendy Fournier, president of the National Autism Association. “We were looked at like crazy parents. Now the science is catching up.”

One method of dietary intervention is the Specific Carbohydrate Diet (SCD), a grain-, lactose- and sugar-free meal plan originally designed for people with irritable bowel syndrome. The theory behind the diet is that restricting hard-to-digest complex carbs – found in such high-fiber foods as grains, starches and many fruits and vegetables – keeps harmful microbes in the intestinal tract at bay, relieving stomach distress.

Pam Ferro, RN, president of the Gottschall Autism Center, has tended to children on the autism spectrum for 15 years, during which parents have consistently reported gastrointestinal issues in their children: bloating, pain, diarrhea, as well as behavioral manifestations of this discomfort, like poor sleep, tantrums, repetitive behavior and crying in the middle of the night.

“Who can focus and concentrate and stop humming when you're in so much pain?” Ferro says.

“I think what we're seeing is that a lot of kids with autism have undiagnosed medical problems and it's because they have communication issues,” Gottschall Center Executive Director Cheryl Gaudino says. “You can't tell someone ‘my tummy hurts.' You express it in behaviors.”

These behaviors can include “toe walking” as well as pressing down on a chair to relieve the stomach pressure. Gaudino's 14-year-old son Ryan was diagnosed with autism at the age of 3 and started almost immediately with dietary intervention (gluten-free, casein-free) “cold turkey,” which Gaudino says was rough – three nights of screaming, not sleeping and not eating.

Gaudino describes the process of weening her son off of gluten and casein (at the time that he was 4, the only biomedical intervention available, according to Gaudino) as similar to coming down off drugs. After the “withdrawal” symptoms subsided and Ryan adjusted, Gaudino began to notice positive changes: Her son could make eye contact, and his “stimming” diminished (stimming is short for “self-stimulation” and is seen in repetitive movements, common in ASD). Ryan has been on the SCD for the past five years.

“It's really a paradigm shift as to how we eat. It's really about getting back to organic foods as much as possible,” Gaudino says. “Before, it was pretty much like, ‘Oh, that's autism.' That weird walk or that weird gait or that diarrhea 20 times a day. ‘That's just autism.' It's not. It's an underlying medical problem that, once addressed and fixed, can really affect the child's functioning.”

In a vicious cycle, kids with ASD often crave the same foods – macaroni and cheese, chips, hot dogs – that make them feel so bad. Ferro says when working with families at the Gottschall Center on switching over to the SCD, “Preparation is key.” She tries to match recipes as closely as possible to what the child is already eating, and encourages parents to put as little pressure as possible around food; even if their kids refuse at first, they will eat eventually.

Ferro began working with her niece, Tonya Silvia, last August, after Silvia and her husband, Marco Ferreira, noticed changes in their 2-year-old son, Brenden, symptoms such as speech delay and stimming by flapping his arms.

“One night I called Pam because (Brenden) was outrageously screaming and crying,” says Silvia of Westport. “(I said,) ‘There's something wrong with him, I don't know what to do.' So then she said, ‘Let's just try this diet.' ”

Though Brenden did not receive an official ASD diagnosis, Silvia says he was borderline enough to begin early intervention treatment and the SCD at the same time. Improvements emerged three weeks later: Brenden's diarrhea got better and he was able to communicate what he wanted verbally, instead of just screaming and crying. And while Brenden's speech hasn't returned fully, he no longer stims.

“I think most of it is the diet,” Silvia says, though Brenden is also still undergoing early intervention. Silvia points to the dramatic shift in demeanor that happens when she occasionally lets her son break the diet and have a slice of pizza at birthday parties – he becomes extremely hyper and turns his ears bright red.

Not that the diet isn't a ton of work for Silvia, who's a stylist at Cost Cutters in Fall River with three kids ranging from ages 1 to 15. Sometimes her mother comes over to help with the cooking. But, “You've got to put your mind to it, because it's your child,” she says.

Fournier, whose 11-year-old daughter has been on the SCD since age 4, believes that the surge in ASD cases is tied to an increase in toxins in the environment, which she says would explain the increase in cases of asthma and attention deficit disorder, as well as autism.

“The big question is, we have kids with autism and their gastrointestinal systems are not working right, so what happened?” she says. “Absolutely it has to be an environmental thing, because the only other option is that it's solely genetic. It's absolutely impossible to have a genetic epidemic. If the genes can mutate to cause the increase that we've seen in autism, it would take, like, a hundred years for that to happen.”

Other speakers at the conference will include Dr. Martha Herbert, pediatric neurologist at Massachusetts General Hospital, presenting “Autism as a Chronic Whole Body Treatable Environmental Illness.” Herbert is an assistant professor of neurology at Harvard Medical School and an internationally renowned researcher, speaker, author and expert on the genetics and neurology of autism.

“Gluten, Leaky Gut, and the Autism Spectrum Disorder: How to Connect the Dots” will be the topic of a workshop led by Dr. Alessio Fasano, professor of pediatrics, medicine and physiology at the University of Maryland School of Medicine; Fasano is also director of the Mucosal Biology Research Center and medical director at the Center for Celiac Research at the University of Maryland.

Ferro will present “Gastrointestinal Pathology and the Use of the Specific Carbohydrate Diet in Autism” and “Mothers of Children with Autism: Strategies to Improve the Outcome of Health and Relationships.”

Additional workshops will be held on finding resources, legal basics for parents, safety and wandering, and transition to adulthood.

For more information on the Specific Carbohydrate Diet, Ferro recommends:

* www.pecanbread.com

* www.breakingthe
visciouscycle.com.

CONFERENCE DETAILS
What: “When the Belly is the Beast: How Intestinal Health Impacts Brain and Behavior”

When: 8 a.m. to 4:30 p.m. April 1

Where: Rachel's Lakeside, 950 State Road, Dartmouth.

Registration: $65, includes continental breakfast, lunch, conference program booklet and an Autism Resource Guide. Visit www.Gottschallcenter.com for complete conference information and online registration.