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Articles: Alan Emond, Pauline Emmett, Colin Steer, and Jean Golding Feeding Symptoms, Dietary Patterns, and Growth in Young Children With Autism Spectrum Disorders Pediatrics 2010; 0: peds.2009-2391v1-20092391 [Abstract] [PDF]

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Concerns and Observations

John Stone   (21 July 2010)

Journal of Pediatrics: Nutrition Doesn't Matter For Kids?

Judith M Converse MPH RD LD   (22 July 2010)

Concerns and Observations 21 July 2010
John Stone, writer UK editor, AgeofAutism.com Send letter to journal: Re: Concerns and Observations JohnDanStone{at}gmail.com John Stone	Dr Emond [1] sits on the UK's Joint Committee on Vaccination and Immunisation [2] a body which oversees national vaccination policy. The controversy over autism and vaccination goes back at least to the publication by Wakefield et al[3] in the Lancet in 1998, and although that journal has now retracted this article concern over autism and vaccination remains live for many parents. Moreover, in an earlier article relating to autism and bowel disease in which Emond also did not disclose his JCVI interest the Wakefield/Lancet controversy was prominently cited by the authors who including Drs Golding and Steer [4,5] present as well on his occasion, while Wakefield et al were also subject to polemical comment in a linked editorial[6]. Emond et al only detected an ASD rate in this study of 62 in 10,000 while Baird et al found a rate 116.1 in 10,000 [7] in a population of UK children and Baron-Cohen et al found a rate of 157 in 10,000 [8]. It should be noted that although great play is made of the ALSPAC project's prospective data, the most important data regarding diagnosis and diet seems to have been collected retrospectively, and is therefore likely to be incomplete and unreliable. A great many studies link autism with dietary and digestive concerns and it is probable that those studies which do detect an issue are simply more sensitive than those which do not [9,10,11,12,13]. [1] Alan Emond, Pauline Emmett, Colin Steer, Jean Golding, 'Feeding Symptoms, Dietary Patterns, and Growth in Young Children With Autism Spectrum Disorders' Published online July 19, 2010 PEDIATRICS (doi:10.1542/peds.2009-2391) [2] JCVI membership (last modified 15 July 2010), http://www.dh.gov.uk/ab/JCVI/DH_094748 [3] Wakefield AJ, Murch SH, Anthony A, et al. Ileal-lymphoid-nodular hyperplasia, non-specific colitis and pervasive developmental disorder in children. Lancet 1998;351:637–41. [4] B Sandhu, C Steer, J Golding and A Emond, 'The early stool patterns of young children with autistic spectrum disorder', Archives of Disease in Childhood 2009;94:497-500, http://adc.bmj.com/cgi/content/full/94/7/497 [5] John Stone, 'Observations and Concerns' Eletter, ADC 28 July 2009, http://adc.bmj.com/content/94/7/497.full/reply#archdischild_el_8593 [6] Atoms, http://adc.bmj.com/content/94/7/i.full [7] Baird G, Simonoff E, Pickles A, Chandler S, Loucas T, Meldrum D, Charman T,'Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP)',Lancet. 2006 Jul 15;368(9531):210- 5,http://www.ncbi.nlm.nih.gov/pubmed/16844490 [8] Baron-Cohen S, Scott FJ, Allison C, Williams J, Bolton P, Matthews FE, Brayne C, 'Prevalence of autism-spectrum conditions: UK school-based population study', Br J Psychiatry. 2009 Jun;194(6):500-9, http://bjp.rcpsych.org/cgi/content/full/194/6/500 [9] Campbell DB, Buie TM, Winter H, Bauman M, Sutcliffe JS, Perrin JM, Levitt P, 'Distinct genetic risk based on association of MET in families with co-occurring autism and gastrointestinal conditions', Pediatrics. 2009 Mar;123(3):1018-24, http://www.ncbi.nlm.nih.gov/pubmed/19255034 [10] Buie T, Fuchs GJ 3rd, Furuta GT, Kooros K, Levy J, Lewis JD, Wershil BK, Winter H, 'Recommendations for evaluation and treatment of common gastrointestinal problems in children with ASDs', Pediatrics. 2010 Jan;125 Suppl 1:S19-29. [11] Whiteley P, Haracopos D, Knivsberg AM, Reichelt KL, Parlar S, Jacobsen J, Seim A, Pedersen L, Schondel M, Shattock P, 'The ScanBrit randomised, controlled, single-blind study of a gluten- and casein-free dietary intervention for children with autism spectrum disorders', Nutr Neurosci. 2010 Apr;13(2):87-100, http://www.biomedsearch.com/nih/ScanBrit- randomised-controlled-single-blind/20406576.html [12] Keen DV, 'Childhood autism, feeding problems and failure to thrive in early infancy. Seven case studies', Eur Child Adolesc Psychiatry. 2008 Jun;17(4):209-16. [13] Yap IK, Angley M, Veselkov KA, Holmes E, Lindon JC, Nicholson JK, 'Urinary Metabolic Phenotyping Differentiates Children with Autism from Their Unaffected Siblings and Age-Matched Controls' J Proteome Res. 2010 May 13, 'Urinary Metabolic Phenotyping Differentiates Children with Autism from Their Unaffected Siblings and Age-Matched Controls'J Proteome Res. 2010 May 13, http://www.ncbi.nlm.nih.gov/pubmed/20337404 Conflict of Interest: Autistic son
Journal of Pediatrics: Nutrition Doesn't Matter For Kids? 22 July 2010
Judith M Converse MPH RD LD, pediatric RD Nutrition Care For Children LLC Send letter to journal: Re: Journal of Pediatrics: Nutrition Doesn't Matter For Kids? judy{at}nutritioncare.net Judith M Converse MPH RD LD	According to this research, kids with autism tend to eat terrible diets, but this doesn't affect growth or nutrition status. I'm a licensed registered dietitian who has been in practice for more than ten years, working with special needs children. I have quantified food intakes and assessed growth patterns on hundreds of children with autism. My experience in practice strongly disagrees with this conclusion, but I will leave it to a parent to illustrate with her own quote how preposterous this study’s conclusion is (as printed in The Chelsea Standard (http://bit.ly/bFLRrg Parents Adjust To Life With Autistic Child) "...he suddenly stopped talking. He stopped eating any food except for pretzels. Instead, he ate sand, wood and rocks." The message from the Journal of Pediatrics on this permits clinicians to conclude that this should trigger no particular concern. It's okay for kids to eat nothing but pretzels, sand, wood, and rocks. No medical intervention required. Did the research mean to suggest this is only okay for kids with autism? In a fashion similar to how it has become acceptable and too frequent for young school children with autism to be tazered (as in http://bit.ly/a3PDj8), but not typical kids? Is this where we are going - classifying children with autism as something other than human? I've seen eating patterns like this in kids with autism many times. Any classic nutrition text describes "pica". This research even noted that the children with autism had pica at nearly six times the rate of their typical peers – but inexplicably, the authors don’t mention that finding in their discussion or conclusions. Mercury poisoning, lead toxicity, poor zinc status, copper imbalance, or iron deficiency tend to accompany an eating pattern like this, in any child. Pica is not benign; it is associated with poor impulse control and obsessive compulsive behaviors - common features for children with autism - and with dangerous exposures to metals that can injure the brain. This is just one of many nutrition problems I routinely find when I assess children with autism. In fact, in 11 years in practice, I have never encountered a child with autism who did not have a treatable nutrition problem. They do typically eat extremely limited diets. It isn't unusual for me to see no more than three items on a food diary: "Gogurt x 3; chocolate milk 4-5 cups/day; plain noodles, 1 big bowl" …and this is what a child will have been eating year in and year out. It's no stretch to intuit that this will leave any child bereft of adequate nutrition to learn, grow, sleep, thrive, or behave to their potential. We would never leave a typically developing child on a diet of nothing but literally only coffee cake and milk for years (another example from my practice). What happens to children who eat like this? My case files illustrate that they get sick more often, become constipated, behave poorly, acquire anemia, acquire deficits of nutrients that impair them functionally, can't focus, don't sleep, and may not grow as expected, just for starters. But now, we can rest assured knowing that this is okay, as long as your child has autism, thanks to this research. I noted astounding methodology flaws in this paper that let the data show - essentially, nothing. Here's where the study went wrong – the errors are many, and egregious: 1) The study group was disproportionately small compared to the control group: There were only 79 children with autism, but nearly 13,000 typical control children. This diffuses differences that might exist between the two groups. The controls will present such a wide swath of eating patterns as to make any difference with the small clinical group vanish. 2) The authors used a tool called a food frequency questionnaire that mothers filled out. This is a nutrition researcher's weakest instrument for assessing diets. It doesn't actually quantify a food intake. Rather than tell you what nutrients a child is actually eating - how many calories, how many grams of protein or fat, or how much iron or vitamin A daily - it just tells, for example, whether or not a child may have eaten a piece of fruit this week, or not. It is better suited to population nutrition studies, where thousands of food intake records are compared between one population group or another. It is not adequately informative for a study of this type with a small data set of 79 kids, because it doesn't describe what the kids actually ate. 3) The authors mixed diet strategies in the test group. Some children were using special diets, some were not. This is confounding. In practice, I observe that children with autism on special diets eat more nutritious food intakes than those who are nutrition-treatment naive. 4) Food questionnaires were filled out by parents. In practice, I find that parents vary widely for how accurately they report what their kids eat. I routinely facilitate this piece of the nutrition assessment process because parents inevitably make gross errors. This is a tremendous weakness in the only data actually collected by the authors (other data came from pre- existing health records). 5) The authors were allowed to invent then use their own contrivance, something they called a "food variety score". There is no precedent to support that this is a valid instrument or not. 6) The authors refer to growth data but do not include it. BMI is referenced but excluded. I routinely find in practice that children with autism fall into growth regression or growth failure, so I was eager to see this information. The authors instead vaguely state that "Weight and height measurements collected by health visitors as part of health surveillance were extracted from the Avon Child Health Computer database." and "At the age of 7 years, all children in the ALSPAC were invited to a special research clinic at which they were weighed and measured." Were the children with autism anthropometrically assessed or not? Where is the BMI comparison? What is a “special research clinic” (is it like Dr Wakefield’s infamous birthday party?), and were the children assessed, or just invited to be assessed? 7) The authors refer to hemoglobin data but don't include it. I have found many children with autism to be in poor iron status - again, I was eager to read this piece. The data simply isn't there and once more, sweeping conclusions are made anyway. Additionally, hemoglobin status alone is not sufficient to support the statements made here about iron status between these groups. Iron status was not measured; the disparity of size between the two groups is too large to find a difference; and, children with autism who begin diet corrections may correct an iron deficit, thereby further confounding the data. 8) The authors state that energy (calorie) intakes and many nutrient intakes were comparable in both groups. But they never measured these. Energy and nutrient intakes were never actually quantified in the study at all. Note that none are reported either. There is an inane table in the article's appendix that lists several nutrients in a comparison of frequencies of intakes that is oblique at best, invalid at worst. It looks impressive, with a long list of individual nutrients followed by statistical test measures, but it states virtually nothing. Odds Ratio (OR) is not a quantity. This table deceives readers with an impression that nutrients were quantified. The only accession the authors make about this is in the cryptic title of the table: "Details of the Diet of Children With ASDs". What exactly is meant by “details”? Another "Dietary Comparison" table in the text lists macronutrients, again giving the impression that these were quantified. Again the table only gives statistical test measures, not quantities. Readers are left to simply trust that the authors interpretations are valid; there is no actual data given for us to assess ourselves. Nutrients intakes were never in fact quantified and compared at all - but the authors make sweeping conclusions anyway about the comparable levels of nutrients eaten by both groups, claiming that there are no notable differences. This appears to be intentionally misleading. This statement astonished me: "No differences were found between children with ASDs and their peers in the balance of carbohydrates, protein, and fats consumed, which suggests that satiety mechanisms are not impaired in ASDs. No differences were apparent in minerals in the diet, including iron and calcium." Note that the authors gingerly say "balance of" nutrients, not actual amounts of nutrients. Stating that "no differences were apparent" is not valid because measures to quantify differences were not used. Mineral intakes were not quantified, and no one assessed mineral status in signs, symptoms, or lab studies. Did the authors begin with a bias, then consciously fulfill it with poor methods, to discourage families from approaching nutrition care for children with autism - an approach riddled with controversy? It's an easy argument to make, as the facts in child nutrition prevail here to expose the crippling weaknesses in this work. The medical community can't have it both ways. If a diet of wood, rocks, and sand is bad for a typically developing kid, it's bad for any kid. No amount of busy looking tables can hide bad work - but it's an old trick in the academic press. This appears to be a hastily done study that tapped a large existing data set to make it seem more valid than it is. Shame on Journal of Pediatrics for supporting it. Articles like this one do a tremendous disservice to families grappling with autism who need nutrition screening and care for their children. Conflict of Interest: Author is a lic. reg. dietitian who provides nutrition assessment, monitoring, and care for children, including children w autism.