Here is a letter I emailed to friends and family today...
Dear Family and Friends around the Globe:
Today (Wednesday, April 2nd) is the first World Autism Day, as proclaimed by the United Nations, and even CNN will be dedicating the day to the topic. This is an interesting day for our family because our son was diagnosed with Sensory Processing Disorder (SPD) in August 2007. He was not diagnosed with autism (although we continue to have follow-up evaluations with a developmental pediatrician). However, since many children with autism also have sensory-related issues or SPD diagnoses, I have been learning much about autism in the past months. To help his SPD, we started weekly Occupational Therapy (OT) sessions soon after receiving the diagnosis and started a “sensory diet” at home and at day care (which basically means that you incorporate sensory-rich activities throughout the day). Also through my research on SPD, I happened upon some information on the “gluten-free, casein-free (GFCF) diet” and learned that many kids with autism are improving in various ways from this intervention. We decided to give it a try for him and see if we noticed any differences. So, we started the GFCF diet in October 2007 and noticed some pretty immediate, remarkable improvements. We’ve stuck with it, and it’s “second nature” at our house now.
I don’t really have any profound thoughts or information to share on this first World Autism Day, but I felt like it was a good time to reach out and say hello to you all and let you know what we’re up to here at our house. Since I know autism, sensory processing disorder, and the GFCF diet may be foreign to many of you, I will include some information below that I have found helpful. You never know when somebody you know may be affected by autism and/or SPD, so I figured this information might be helpful for others as well.
I hope this day finds you healthy and happy!
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What Is Sensory Processing and SPD?
“Sensory Processing” is a term that refers to the way the nervous system receives sensory messages and turns them into responses. All of us are constantly managing sensory messages. Sight, sound, touch, taste, smell – the five familiar senses that let us hear the clock ticking in the background, feel the breeze blowing in the window, smell the cookies baking in the oven – come instantly to mind, but we’re also constantly managing sensory messages from two less familiar sensory sources. Sometimes called the “hidden” senses, the proprioceptive and vestibular senses give us our perceptions of speed, movement, pressure on our joints and muscles, and the position of our bodies. It is your sense of vision enabling you to see the words on this page, your vestibular sense signaling that you are sitting upright while you read, and your proprioceptive sense letting you know how much resistance is needed to hold up the book [laptop]. Most of us are born with the ability to receive sensory messages and organize them effortlessly into the “right” behavioral and physiological responses. [. . .] Sensory Processing Disorder exists when sensory signals don’t get organized into appropriate responses and a child’s daily routines and activities are disrupted as a result.” [From Sensational Kids by Lucy Jane Miller]
SPD Diagnosis
“Currently, SPD is not covered by the Diagnostic and Statistical Manual (DSM) categories, and its absence limits awareness of the disorder and contributes to the misdiagnosis and inappropriate therapeutic treatment of children. The DSM classifies all childhood and adult mental health and developmental disorders.” [From the Sensory Processing Disorder Foundation]
The GFCF Diet
Contrary to conventional medical wisdom, many now believe that autism and autism spectrum disorders are treatable and recoverable, and a growing number of non-conventional doctors (called “Defeat Autism Now!” or “DAN!” Doctors) are practicing a “biomedical approach” to autism treatment and recovery. Nutritional therapy, or dietary intervention, is considered to be one part of this protocol (and the first, most basic step). There are six different diets that can be used in the biomedical approach, and the gluten-free, casein-free (GFCF) diet is one of those (and the most well-known). The GFCF diet is being used to treat autism, but it also is being used for asthma, allergies, and Attention Deficit Hyperactivity Disorder (ADHD), and a slew of other issues as well (including SPD).
What is Gluten?
Gluten is present in wheat, rye, barley, and oats. Gluten is a protein that has a sticky, gluey texture that helps give wheat products the ability to bake properly. A large percentage of the American population has a deficiency of the particular enzyme that breaks down gluten. This enzyme is called DPP4 and is also involved in the digestion of milk products. When the DPP4 enzyme fails to do its job, gluten is only partially broken down. This creates partial proteins, or peptides, that can sometimes mimic the chemical composition of opiates. These peptides are also very similar to the innate human opiates called endorphins. These opioid peptides frequently cause feelings of spaciness, and even intoxication, in kids who don’t have enough of the DPP4 enzyme, and who are therefore intolerant to gluten and casein. These feelings of intoxication can become very appealing to kids, and the pleasure they create can make it hard for kids to give up gluten and casein. [From Healing the New Childhood Epidemics by Kenneth Bock, M.D.]
What is Casein?
Casein is one of the primary proteins in milk and all milk products, including cheese, cream, and butter, and it’s the hardest of these proteins to break down. An insufficiency of the DPP4 enzyme results in only a partial breakdown of casein, creating a peptide (partial protein). This mischievous protein can create caseomorphins that cause the same type of intoxication, contentment, and pleasure as the morphine-like substances that can come from gluten peptides. This intoxication can result in cravings, and in the strong attachment that so many kids have to milk. [From Healing the New Childhood Epidemics by Kenneth Bock, M.D.]
Beyond GFCF
The GFCF diet is considered to be just part of the puzzle. Other aspects of the biomedical approach include supplements (vitamins, minerals, etc), detoxification, and medication. Currently, we are doing the GFCF Diet 100%, and we dabble every now and then (as needed) in the anti-candida (yeast) diet. We are doing some supplementation, but nothing too crazy right now.
Links of Interest
My blog!
One-page brochure: “Why My Child Is on a Special Diet”
Autism Overview
SPD Overview
DSM Criteria for autism spectrum disorders
SPD Symptoms Checklist
10-weeks to going GFCF
Autism recovery stories
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