Local Family Struggles with Autism Diagnosis

I am a close acquaintance of a local couple, Tom & Alicia Stanley (names changed for privacy reasons), who have a three-and-a-half year old autistic son.

Autism Diagnosis

Around Noah’s second birthday, Tom & Alicia noticed disturbing changes to his behavior: he became socially withdrawn, rarely making eye contact; he displayed repetitive behaviors, such as walking in circles; and, he was not acquiring language skills at the usual rate, speaking mostly gibberish or an occasional understandable word.

The Stanleys had Noah evaluated by a pediatrician specializing in developmental problems, who diagnosed him with Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS), sometimes referred to as atypical autism. PDD-NOS falls under the umbrella diagnosis of Autism Spectrum Disorders, which also includes classical autism and Asperger’s syndrome.

The specialist recommended that Noah begin Applied Behavior Analysis (ABA), which is the most widely practiced behavioral therapy for autistic children. For over a year now, Noah has received 3 hours of in-home ABA therapy each weekday. He also receives another 20+ hours of ABA therapy each week through special education classes at the Cambridge public schools.

From talking with Tom & Alicia, and from my own observations, I think it is accurate to say that Noah has improved only slightly. His progress has been very slow & incremental. His social & language skills and his level of functional behavior (feeding himself, toilet training, etc.) are still markedly delayed.

Tom, who has a PhD in neuroscience and is working on a post-doc fellowship at Tufts, began doing exhaustive autism research on the net. Tom became convinced that he and Alicia needed to combine the biomedical approach for autism treatment with Noah’s ABA therapy.

The biomedical approach begins with a comprehensive assessment of the child’s state of health, including a battery of blood & urine lab tests. Specially-trained ‘DAN!’ (Defeat Autism Now) doctors and dieticians closely examine the child for any of the biomedical factors which are believed to trigger autistic behavior, including food sensitivities or elevated blood levels of heavy metals.

Virtually all of the biomedical practitioners recommend a gluten-free, casein-free (GFCF) diet, because, the practitioners believe, autistic children digest gluten and dairy products differently than non-autistic children. Partially-digested gluten & dairy proteins or peptides are carried from the gut by the bloodstream to the brain opiate receptors, causing the child’s nervous system to be constantly “drugged”, affecting every aspect of the autistic child’s behavior.

Gluten-Free Casein-Free Diet Forbidden Foods

I recently spoke by phone with Carol Englender, MD, who has treated hundreds of autistic children over the last 20 years at her practice in Framingham. Dr. Englender strongly endorses the gluten-free casein-free diet: “It’s a good starting place and it’s very beneficial. I’ve found that it works for probably 85-90% of the kids that I’ve seen. They become more alert…sometimes they’ll start talking. Their behavior improves.”

Dr. Englender acknowledges that the causes of autism are multifactorial, and not just related to the child’s diet. She mentions a number of other factors which likely play a role: genetics; childhood vaccinations; environmental pollutants, including heavy metals, pesticides, and plastics; and, a poor maternal diet during pregnancy.

Noah has been on the GFCF diet for about three months now, but Tom & Alicia report no dramatic improvement. Working through his understandable discouragement, Tom said to me, “There is always progress, but it’s very, very slow. I cannot see any time when he is not in his own world. His social skills, speaking, language…it’s actually the same as it was a year before.”

About James Bedsole

James is a Boston-based freelance journalist and medical professional. Raised in Memphis, TN, James moved to Massachusetts in the 1980's.


One thought on “Local Family Struggles with Autism Diagnosis

  1. Just stumbled upon your blog while searching for coconut oil references and saw this article in the side bar. Please recommend that this family read the book “Gut and Psychology Syndrome” (aka, GAPS), by MD-neurologist and Master’s in Clinical Nutrition, Dr. Natasha Campbell McBride. I have personally seen it make a HUGE difference in the lives of two children with the same diagnosis. One of them is my own child. I hesitate to use the word “cure,” because autistic stimming symptoms return if the two, unrelated children stray from the GAPS diet . . . but a strict diet is a small price to pay to have your child back. Some GAPS parents report that strict adherence is often only a must for a couple of years. GFCF is not enough for some kids it turns out. It was not enough for my child. My child did not improve much at all with GFCF, but the GAPS Diet gave me my child back!

    Posted by Registered Nurse and Mom of Similar Child | June 15, 2012, 8:57 pm

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