Don't be misled. I came across an article of some importance to those with children with ASD. However, the title of this article, as well as the opening paragraph, are extremely misleading and discouraging. It should be just the opposite.
I am referring to "Evidence lacking for special diets in autism," by Carlak Johnson of The Associated Press.
Mr Johnson reports that, "[a]n expert panel says there's no rigorous evidence that digestive problems are more common in children with autism compared to other children, or that special diets work, contrary to claims by celebrities and vaccine naysayers."
While this is technically a true reading of the panel's report published in the January issue of Pediatrics, the title of the article and the manner in which it is written, paint a very distorted view of the diets that many parents and professionals have found to help children with ASD, the connection between digestive issues and autism, and of course, those who employ such diets and believe there is a connection.
In truth, the article should have been entitled, "Experts call for more research concerning diet and autism."
The first paragraph should have read, "An expert panel has found that more research is needed to determine whether digestive problems are more common in children with autism. The panel also called for more research concerning the effectiveness of special diets now employed by the many concerned parents and professionals who work with children with ASD."
I mean, really, what message is Mr. Johnson trying to send when he compares "an expert panel" that "says there's no rigorous evidence" to the "claims by celebrities and vaccine naysayers"?
And, isn't it odd the way the second part of that sentence reads? It sounds like it says that the panel determined that "special diets" don't work. But, what it really says is that "celebrities and vaccine naysayers" belief that there is "rigorous evidence" supporting the use of special diets is incorrect.
Note the difference: the expert panel never, ever said that special diets don't work. It only said that there is a lack of "rigorous evidence" concerning the effectiveness of such diets, and the panel called for more research on this issue!
Words really do matter.
In fact, a careful reading of the actual report paints a very different picture. In a nutshell, the panel recognizes that (i) ASD children do suffer from gastrointestinal issues - some studies noting the prevalence of such issues to be as high as "70% or higher" in that population; (ii) there is evidence that these children have a more prevalent occurrence of food sensitivities and food allergies; and (iii) it is very important that these issues be treated since they may be the cause of many of the behavioral problems these children exhibit. The reason the study was undertaken in the first place was to determine whether there was an "evidence-based" diagnostic and treatment regime for gastrointestinal problems presented by ASD children!
And, while not finding well-structured studies that demonstrate that special diets help these children, the panel acknowledged the anecdotal evidence supporting such diets and called for more research in this area.
Specifically, the report found the following pertinent points:
1. The panel acknowledged that more research is needed on the prevalence of gastrointestinal issues and ASD: "The prevalence of gastrointestinal abnormalities in individuals with ASDs is incompletely understood" with "the reported prevalence of gastrointestinal symptoms in children with ASDs has ranged from 9% to 70% or higher." Furthermore, while "[m]ost of these studies had 1 or more methodologic limitations . . . the preponderance of data were consistent with the likelihood of a high prevalence of gastrointestinal symptoms and disorders associated with ASDs."
2. A specific gastrointestinal issue, i.e., "autistic enterocolitis" has not been indisputably established. The report does not state that "autistic enterocolitis" does not exist. Instead, it merely states that the study that "suggested" its existence is flawed, and therefore, in the panel's opinion, the existence of "autistic enterocolitis" has not been established.
3. At least one study found that 43% of children with ASDs have a problem with "altered intestinal permeability." However, the panel believes the "[e]vidence for abnormal gastrointestinal permeability in individuals with ASDs is limited," and that "[p]rospective studies should be performed to determine the role of abnormal permeability in neuropsychiatric manifestations of ASDs."
4. Nutritional deficiencies are presented by ASD children. "Nutritional deficiencies have been reported in patients with ASDs, which is not surprising because of the narrow food preferences of many affected individuals and/or purported therapeutic diets that might be nutritionally inadequate. In a study of 36 children with ASDs, regardless of unrestricted or restricted diet, essential amino acid deficiencies consistent with poor protein nutrition occurred more frequently than in age- and gender-matched controls."
5. There is evidence that at least some ASD children do respond to dietary interventions. However, the panel believes that more data is needed before dietary modifications can be routinely recommended. "Anecdotal reports have suggested that there may be a subgroup of individuals with ASDs who respond to dietary intervention. Additional data are needed before pediatricians and other professionals can recommend specific dietary modifications. Dietary modifications such as removal of milk for symptoms of lactose intolerance may be approached empirically, as with any other pediatric patient with consistent symptoms. The data on the value of specific diets being effective in the treatment of individuals with ASDs are difficult to assess. Many dietary modifications are believed to have a beneficial outcome, although placebo effects are likely to be high in this setting. The few studies in the literature are difficult to interpret without adequate control groups.
"Many parents and care providers have observed and reported improvements in problem behaviors with nutritional or medical interventions. Some of these therapies are based on purely observational reports; many are based on studies that may have reached erroneous conclusions because of recruitment bias, lack of validated or standardized outcomes, or inadequate controls. . . . Anecdotal reports that restricted diets may ameliorate symptoms of ASDs in some children have not been supported or refuted in the scientific literature, but these data do not address the possibility that there exists a subgroup of individuals who may respond to such diets."
6. While not endorsing a "gluten-free" or "casein-free" ("GFCF") diet, the panel does recognize that in at least one study, parents of ASD children who undertook these special diets "reported positive subjective clinical changes while their child was on the GFCF diet." Moreover, the panel does not explicitly discourage the use of such diets.
"Few studies have examined the effects of a casein-free diet, a gluten-free diet, or combined GFCF diet on the behavior of individuals with ASDs. To our knowledge, only 1 double-blind placebo controlled study has been published to date. In this double-blind crossover trial of GFCF or typical diet in 15 children with ASDs, there were no differences in measures of severity of ASD symptoms, communication, social responsiveness, and urinary peptide levels after 12 weeks. Nevertheless, after being informed of the results, 9 parents wanted to continue the diet and reported positive subjective clinical changes while their child was on the GFCF diet. . . . Parents need information to help plan a balanced diet within the restrictions imposed by the chosen diet. Given the real hardships associated with implementation of a strict GFCF diet, additional studies are needed to assess risk factors and possible markers that identify individuals who might benefit from these diets."
7. The panel recognized that immune problems have been reported in ASD children, and that research exists that suggest such problems may impact neurodevelopment. However, the panel notes that a direct relationship between immune dysfunction and ASD needs to be proven.
"There has been research to suggest that immune responses can influence neurodevelopment and that significant immunologic alterations may play a key pathogenic role in some individuals with ASDs. We are now able to accurately define immune status in individuals with ASDs. Well-defined studies are needed using larger sample sets and age- and geographically matched controls, with extensive immune analysis, to determine the precise relationship of immune dysfunction to clinical symptoms."
8. Moreover, there are preliminary findings that suggest a relationship between gastrointestinal inflammation and gastrointestinal symptoms associated with ASDs. Additional investigation into such a relationship is needed. "A few studies have suggested a relationship between gastrointestinal inflammation and gastrointestinal symptoms associated with ASDs. The gastrointestinal tract is the largest immune organ in the body, containing up to 80% of Ig-producing cells in the body. . . . These studies suggest an underlying chronic inflammatory process in some individuals with ASDs and co-occurring gastrointestinal disturbances. . . . These findings should be considered preliminary and will require confirmation."
9. Gut flora, health and disease are significantly related. Additional research concerning the relationship between gut flora and ASDs must be performed. "The microbiological ecosystem of the gut is complex and poorly understood but likely plays a significant role in both health and disease. Few researchers, however, have attempted to critically examine the relationship of gut microflora to ASDs. Future studies will require molecular approaches aimed at identification and quantification of microbial species. If an association is identified, it may lead to novel treatment trials."
In summary, the panel noted, [a]ccrual of new knowledge will advance our approach to the management of ASDs and co-occurring medical conditions. Recognition that problem behaviors might indicate an underlying medical condition will facilitate diagnosis and treatment and ultimately improve the quality of life for many persons with ASDs. This expert panel has addressed considerations in the diagnostic evaluation of gastrointestinal symptoms in individuals with ASDs that may lead to effective treatment options, with the hope that patients will have better access to enlightened care."
"Enlightened care." I like the sound of that.