The Interactive Autism Network is a huge data gathering and research project by the Kennedy Krieger Institute with sponsorship provided by Autism Speaks. Created in January of 2006, IAN's purpose is to track data about families of children with autism, including data about non-autistic siblings. The organization has been compiling the results from the surveys and has just released the latest data from their treatment series, this time the focus was the use of special diets.
Frequency of Dietary Treatments
In the study, there is treatment data on 6,295 children and of those, 1,034 (16.4%) are on a special diet (or diets) as part of their treatment plan. Of the specialized diets, the most commonly used dietary intervention is the GFCF diet. An artificial preservative/sweetener/dye free diet (like the Feingold Diet) comes in a distant second. Other less-commonly used diets are a sugar/carbohydrate-free plan, a yeast-free diet, a soy-free diet and then a variety of other non-specific plans.
Learning About the Diet
The survey went beyond simply inquiring as to what dietary interventions parents used, but how the parents heard about the diet. When looking at the GFCF diet, 33% of the parents stated that they learned of the diet through the internet. Only 27% of parents learned of the diet from their doctors while 22% of responders heard of the GFCF plan by other parents or friends.
Symptoms
The survey also queried parents on the symptoms that the GFCF plan addressed. The number one targeted symptom was gastrointestinal issues with 88% of parents responding that the GFCF diet was chosen to improve a child’s GI problems. Other symptoms that the GFCF diet targeted include allergy/immunological concerns, maladaptive behaviors, social issues, communication deficits, stereotypical behaviors, executive function issues and neurological concerns.
Treatment Burdens
Compared to other treatment options, undertaking the GFCF diet was not as much of a burden on time or finances. The largest modification taken among families using the GFCF diet was finding a new doctor; however only 16% of families had to find a new doctor to oversee the diet plan. The second most frequently cited burden was the need to travel more than 100 miles for treatment support with 8% of families on a special diet travelling this distance. Surprisingly, 7% of the families reported that one or more of the parents had to quit their jobs in order to participate in the GFCF diet plan.
Efficacy of GFCF Diet
As with any autism treatment option, assessment of the efficacy of the intervention is in order. Of the parents in the survey, 16% noticed minimal improvement, 19% noticed a very high level of improvement, 27% categorized the improvement seen in the high category and 38% reported a moderate level of improvement.
The GFCF diet is easily the most common, and thus most studied, dietary intervention used to treat autism spectrum disorder symptoms. The IAN report, found in the All About Research section of the IAN website, concludes with the following warning, “If you are considering trying the GFCF diet, there is one important step you can take to keep risk as low as possible. A major concern is making sure growing children receive sufficient nutrition as certain aspects of their diet become restricted."
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