The Interactive Autism Network (IAN), a project collecting information online from families of children with autism spectrum disorders (ASD) throughout the United States, reports that more than 16% of participating families are using special diets to treat their child's autism. Of all the special diets, the gluten-free/casein-free (GFCF) diet is the most commonly used. Parents report high cost and some inconvenience, but also high expectations for their child's improvement coupled with an evaluation of the treatment as low risk.
|Please Note: These Findings Are Preliminary
The analyses presented here by the Interactive Autism Network are preliminary. They are based on information submitted over the Internet by parents of children with autism spectrum disorders (ASDs) from the United States who choose to participate. They may not generalize to the larger population of children with autism spectrum disorders. The data have not been peer-reviewed -- that is, undergone evaluation by researchers expert in a particular field -- or been submitted for publication. IAN views participating families as research partners, and shares such preliminary information to thank them and demonstrate the importance of their ongoing involvement.
We encourage autism researchers investigating these topics to apply for access to the IAN database. Contact firstname.lastname@example.org.
Special Diets in Autism
The use of special diets to treat symptoms of autism is fairly widespread.1,2 Researchers who have surveyed families of children with ASD report frequent use of these diets, with figures ranging from 15% to 38% depending on the study and whether a family is asked if they are currently using a diet or have ever used one.3,4,5,6 Analysis of IAN data yielded similar findings: 16.4% of families participating in IAN and reporting on treatments say they are using at least one special diet as part of their child's treatment regimen.
Most of the diets being used to treat autism involve removing one or more specific substances from a child's diet whether that substance is wheat (or gluten), milk (or casein), soy, sugar, yeast, eggs, or artificial colors, flavors, preservatives, or sweeteners. Whatever the case, it is believed that a certain substance is either causing autism symptoms or making them worse. Its removal should therefore help matters.
The autism-focused diets in most common use are the gluten free, casein free, or gluten-free/casein-free (GFCF) diets. Gluten is a substance found in wheat and wheat products. Casein is found in milk and other dairy products.
Why are wheat and milk at the heart of the most popular dietary interventions in autism? In brief, there is a hypothesis that, in certain individuals with ASD, substances resulting from the breakdown of gluten and casein are passing through the intestines to reach the blood stream and the rest of the body. Once there, it is proposed, they create major problems.
There are several variations of this idea. All begin with the notion that some people with ASDs have intestines that are more permeable or “leaky” than they ought to be. The cells lining the intestines are supposed to keep many potentially toxic substances out of the bloodstream, away from the rest of the body and especially the brain. A “leaky gut” lets these through. Once they are through, they can have a variety of negative effects.7,8
Through the digestive process casein and gluten break down into peptides. The original “leaky gut” hypothesis emphasized that these peptides are opioids -- substances that behave much like morphine in the body, impacting the development and functioning of the brain.9,10 It has also been suggested that children with ASDs have an allergic reaction to such peptides.11 A more recent view is that these peptides may evoke a dysfunctional non-allergic immune response. Activation of mast cells, which play a major role in allergic reactions, immunity, and inflammation, may lead to a cascade of events resulting in gut-blood-brain barrier permeability with ASD and gastrointestinal (GI) problems as the end result.12,13
One group of researchers investigated whether it is only children with ASD and GI abnormalities who have some kind of immune reaction to common dietary proteins like those in milk. They compared immune response in children with ASD who had GI problems (some on restricted diets and some not); children with ASD who did not have any GI problems (some on restricted diets and some not); children with non-allergic food hypersensitivity (some on restricted diets and some not); and typical children. Their findings suggest that there may be defects of innate immune response in children with ASD and GI issues but not in children with ASD and no GI issues.14
So far, there have been only two randomized controlled trials conducted on the GFCF diet, with mixed results.15 In Norway, Knivsberg and colleagues worked with children who had a diagnosis of autism as well as peptides in their urine – a sign of “leaky gut” as described earlier. Only twenty children participated in this twelve month study, ten on the diet and ten in the control group. The people judging the outcome were “blinded”; they didn't know who had been on the diet and who had not. Children, parents, and researchers all knew who had been on the diet, however. Children who received the intervention did improve compared to those who had not. Their autistic trait and social interaction scores were lower, while overall ability to communicate and interact improved.16
Another study, this one taking place in the U.S., recruited 13 children with autism. They placed half the group on the GFCF diet and half on a regular diet for six weeks, then switched the groups and continued for another six weeks. In this study, parents and observers were “blinded.”17 In contrast to the Norwegian study, no significant effects of the diet were found. In addition, eight parents were unable to correctly identify when their child had been on or off the diet. Despite this, parents of seven of the children reported improvements in language, decreased hyperactivity, and decreased tantrums.
Were the researchers missing something, or were hopeful parents seeing something that wasn't there? It has been shown that parental expectations can influence how a child's behavior and progress are viewed. In one study, for example, parents who were told their child had received a sugar drink rated their child as more hyperactive than did parents who were told their child received a sugar-free drink. (In truth, all the children in this study were given a sugar-free drink.)18
Consider the case of secretin. Following a news story reporting that a child with autism dramatically improved after receiving this hormone during a medical procedure, secretin was hailed as a possible cure for autism. A number of clinical trials later showed that secretin was not effective in the treatment of autism.19 In one such study, 30% of both the group receiving secretin and the group receiving a saline-solution placebo showed improvement, according to parent and teacher reports. The researchers concluded that secretin was not an effective treatment for ASD compared with the placebo. Regardless, 75% of participating parents, when informed of the study's result, continued to express belief in the potential benefit of secretin as an autism treatment.20
This demonstrates why having a control group and “blinded” observers are so important. Based on parent and teacher report alone, and without a placebo-controlled group for purposes of comparison, secretin would have appeared to be effective in at least some cases.
Now it is the GFCF diet that needs to be put to the test. The two trials done so far were contradictory and extremely small. Considering the widespread use of the GFCF diet, much larger randomized controlled trials are urgently needed. Fortunately, at least one of these is now being carried out by the National Institute of Mental Health.
One crucial issue will be whether the diets are effective (or not) for specific groups of children with ASD. Are there certain subgroups, such as those with GI issues, who are most likely to be helped by this intervention? Are there other groups for whom the diets do little or nothing? To guide treatment decisions, it is crucial to identify not only whether a treatment is effective, but also for which group of children.
Much of the overlap in diet use is the result of thorough parents reporting on the gluten-free, casein-free, and gluten-free/casein-free diets. Even accounting for such duplication, which reduces our total diets from 2,009 to 1,318, the GFCF diet is by far the most frequently used dietary intervention. Diets focused on removal of artificial colors, flavors, preservatives, and/or sweeteners are a distant second, followed by sugar or carbohydrate-free or restricted diets, yeast-free diets, soy-free diets, and a variety of others. (See Figure 2.)
Because the GFCF diet is considered a “complementary and alternative” treatment, we wondered how families had learned about it. Who had most influenced them to try it? Despite the fact that the diet is categorized as an alternative treatment, 27% of the 800 families who answered this question were influenced by their doctor to try it. Thirty-three percent were convinced to try it by what they had read on the internet, while another 22% said other parents or friends had recommended this intervention. (See Figure 3; percentages add up to more than 100% due to rounding.)
What symptoms did families hope the GFCF diet would alleviate? Looking at Figure 4, it is clear that it was hoped the diet would treat a wide variety of symptoms, from social relatedness to executive function. The most frequent symptom of concern, however, was gastrointestinal distress, which makes sense considering the theories underpinning the diet.
Parents wrestle with many pros and cons when making treatment decisions. These include weighing the cost of the treatment, the risk it involves, and other burdens it will impose against hoped for results. Of course, trying something that will at least do no harm is a very attractive point in a treatment's favor. One likely reason for the popularity of the GFCF diet is that 95% of parents felt the diet presented no or minimal risk. (See Figure 5.)
Expectations for improvement, on the other hand, were quite high. Over half the parents expected the GFCF diet to yield at least moderate improvement in their child. (See Figure 6.)
There were some extraordinary and inconvenient measures parents didn't need to take to obtain the GFCF diet. Only 16% said they had needed to find a new doctor to oversee the diet, while 8% said they had had to travel more than 100 miles (perhaps to see this doctor or to find specialized food products). Seven percent said they had had to quit a job, possibly to oversee and manage their child's special diet. (See Figure 7.)
Parents didn't expect the diet to be free of inconvenience, however. As shown in Figure 8, more than 80% expected a moderate to very high level of burden when starting this intervention. After all, a diet may involve making menus, learning new recipes, changing family habits, and coping with a child's resistance to a new routine or to new foods. In addition, removing all wheat and milk eliminates many everyday foodstuffs, from crackers to cheese, from bread to ice cream, not to mention most fast food. The GFCF diet therefore requires shoppers to read every label, and to find substitutes for many common foods. These substitutes may be expensive, available only at specialized stores or by mail order.
|It may be that parents were willing to take on anticipated burdens in exchange for what they perceived as low risk combined with high potential for improvement. As for financial impact of the diet, the majority of parents report that it costs somewhere between $51 and $500 per month to provide it. (See Figure 9.)
After a child begins a diet, most parents are pleased with the results. The vast majority (82%) report definite improvement in their child's skills. How much improvement? That varied a great deal, as shown in Figure 10. About half reported a “minimal” or “moderate” level of improvement, while the other half reported a “high” or “very high” level of improvement.
|A word of caution: The information reported here reflects only parents' evaluation of current treatments. Because any treatment a child is currently receiving must be considered worthwhile by parents, we expect ratings to be fairly high at this point. As data are collected over time, and families can report on treatments they have dropped, there likely will be more negative reports, not just on this treatment, but on many treatments. Add to this the major impact of the placebo effect found in many autism treatment studies, and it is wise to take these findings as very preliminary and as yet incomplete.
Although it can be inconvenient and expensive, the GFCF diet is popular because parents feel it may offer at least modest benefits with low risk.
If parents are considering trying the GFCF diet, there is one important step they 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. For example, one study showed children with ASD had thinner finger bones than other children, and this was especially true for those on casein-free diets.21 Parents should make sure to consult with their child's pediatrician or another physician or nutritionist if they decide to undertake any kind of special diet.
If you have comments and insights about these preliminary findings, please share them in the research-focused IAN Community Discussion Forum under “IAN Research Reports” and then under “Special Diets.” Your feedback may influence future research.
(Any member of the public may view these discussions, but to post, you must join IAN Community. Go to www.IANcommunity.org and click “Join IAN.”)
The Interactive Autism Network is the nation's largest online autism research project. Its mission is to accelerate the pace of autism research. Families affected by autism answer questionnaires over the Internet, from the comfort of home. Researchers apply to IAN to use the resulting data, or to find participants for their local studies. The IAN Community (www.IANcommunity.org/), meanwhile, provides evidence-based basic information on autism spectrum disorders, articles by leading researchers in the field, and reports on IAN's latest findings.
On Dec. 3, Newsweek.com published an article entitled "A New Diet Villian," which looks at the growing popularity of gluten-free diets. The story quotes Peter Bell, executive vice president of Autism Speaks. Click here to read the story from Newsweek.com
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