April 1st ushers in Autism Awareness Month and there is an excellent conference
that kicks off in Dartmouth, Massachusetts to start the month. “When the Belly is the Beast: How Intestinal Health Impacts Brain and Behavior,” is a symposium dedicated to exploring nutritional and biomedical approaches to treating autism. In addition to speakers on
gastrointestinal health, experts will address legal resources for parents of children with
autism and how to access services in the community. The event is sponsored by the Gottschall Autism Center, named after Elaine Gottschall, famed research and cell biologist who wrote
"Breaking the Vicious Cycle: Intestinal Health through Diet."
Gottschall pioneered the Specific Carbohydrate Diet (SCD), a grain, lactose and sugar-free diet designed to eliminate hard-to-digest complex carbohydrates and prevent harmful microbes in the intestinal tract from causing damage. Many children on the autism spectrum have underlying gastrointestinal issues that manifest as bloating, pain and diarrhea, as well as poor sleep, tantrums, repetitive behavior and crying at night. Because of their communication issues, children often express their physical pain in behaviors.
My son with autism suffered terribly for years because of his undiagnosed gastrointestinal problems. He was twice hospitalized for anxiety so severe, it manifested as intrusive thoughts that were long speculated to be psychosis. Ominous warnings of major mental illness were forecast and he was placed on adult levels of anti-depressants and anti-anxiety medications.
At the age of thirteen, his problems culminated in a diagnosis of Crohn’s Disease, an auto-immune disorder in which the gut is utterly diseased and nutrients cannot be absorbed by the body. Chronic in nature and life threatening, the shock of his new diagnosis left me beside myself with fear.
Hospitalized for six weeks during which his weight fell to sixty four pounds, he finally went home with a stomach tube surgically implanted in his belly through which formula was pumped, his only source of nutrition. I had been terribly wary of it, because a naturopath had speculated he was allergic to milk, but the doctors dismissed my concern and refused to consider diet as any component of the problem or solution.
Instead, they proffered Remicade, a chemotherapy agent that shuts down the immune system and was to be administered in two-hour infusions at the hospital twice a month for the rest of his life.
I felt physically ill at this prospect and quickly researched the drug, which turns out to carry a black box warning for causing lymphoma in adolescents, my son’s age group. A bevy of other harrowing side-effects including onset of rheumatoid arthritis convinced me that I would not consent to this treatment plan. Not coincidentally, it is also one of the top four profit grossing drugs in the entire world. It would cost two thousand dollars per infusion with the add-on of it having to be rendered in a clinical setting.
Defying the doctors was a dangerous course, as they wanted me to be declared an unfit mother. Through a series of miraculous events that I liken to finding Harriet Tubman’s underground railroad to freedom, I was led to a doctor in a neighboring state who specialized in autism, environmental medicine and immunology.
The first thing he did was give my son a food allergy test. It turns out that my child was allergic to almost everything that constituted his diet, including the milk being pumped into his system eighteen hours a day. And those killer doses of psychiatric drugs were further upsetting his stomach.
The doctor told me to slowly wean my son off the psychiatric drugs, supplanting them with oxytocin and nutritional doses of Lithium. We began the SCD diet and my son detoxed for a solid month, creating quite an ordeal. But after that, he became calmer and clearer and started to actually enjoy eating, as opposed to dreading it. With two ongoing prescriptions for his gut, low dose naltrexone to regulate his immune system, vitamins, supplements and diet, my son has gained thirty five pounds and is the healthiest he has ever been in his entire life. The Crohn’s disease has been in remission for over a year.
Sometimes, diet is disparaged as an expensive fad, but for us, it’s been a Godsend. My son’s SCD diet was very daunting initially and represented a paradigm shift in the way we approached food. But now, it’s hard to believe we ever lived any other way.
Fortunately, there is a great deal of online support and information available about the SCD diet and if anyone wants help, I would be happy to share what I have discovered in the way of websites, recipes and food sources.
I wish my son had that food allergy test years ago as it would have spared him so much pain and grief.
Consider having your child with autism tested for food allergies. You may discover no allergies to support introducing a casein-free, gluten-free diet or other food restrictions. Then you have the relief of a rule-out. But if your child is found to have allergies, adjusting his or her diet can vastly improve the quality of life — and may even save it.