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Biomedical Troubleshooting 101: Is There An Autism Diet?

Biomedical interventions for autism can get a little overwhelming

Recently I held a “Biomedical Troubleshooting” session at the Imagine! Colorado offices, sponsored by Autism Society of Boulder County.  Both veteran and newbie parents showed up – parents who had done everything from heavy metals chelation and special diets, to nothing but behavioral interventions – but across the board, the same questions were asked:  Which diet does my kid need for an autism diagnosis?  What lab tests? Special food, weird meal routines, hours in the kitchen making bone broths and nut milks – is it worth it?

Well, there is no “diet for autism”. Every child with autism in my practice is unique. There are several nutrition and GI problems that come up often with an autism diagnosis, and these are treatable. I map those for families, using clinical standards for nutrition assessment as well as functional nutrition lab tests that look deeper for problems. Find the trouble, make a plan to fix it, and children feel, function, learn, grow and behave better. Nutrition perfectly supports and complements all your child’s other interventions. All are important. But none unravel underlying physiological barriers to progress the way a targeted nutrition program can.

It comes down to being a nutrition detective, and finding that nutrition understory that is meaningful in your child’s case. Whether you have placed your child on Gut and Psychology Syndrome diet (GAPS), Specific Carbohydrate diet (SCD), gluten – casein free (GFCF), low oxalate (LOD), Body Ecology diet, yeast free diet, Paleo, Feingold, or no diet at all – you first need to know if it’s the right measure for your child. I meet families week after week who implement special diets without expert help.  Sometimes it works wonders… and sometimes it just drives a family nuts.

This didn’t emerge anew in the last few years, just for kids with autism. I’ve been a registered dietitian since 1989. In both my graduate and undergraduate training, much emphasis was placed on infant and child health, and how nutrition impacts these.  Since about the mid 1990s, “biomedical treatment for autism” tools have tapped tenets in pediatric nutrition, and expanded on that evidence base with an integrative medical approach. This works for kids with any chronic condition – from autism, to ADHD, epilepsy, growth or feeding problems, Down’s syndrome, or severe behavior and mood problems. And, good news, pieces of this may be accessible within insurance networks you already have.

For instance, before you leap into provoked urine toxic metals tests, spaghetti squash fries, and methylcobalamin injections (all of which their place when indicated), knock off the simple stuff first with your mainstream physician.  These are things that can also profoundly impact a child’s behavior, sleep, growth, learning, appetite, immune function, or development – and may prevent progress with more novel therapies if left unaddressed:

1 – Is your child underweight, below 5th percentile for age for body mass index (check here), eating enough  most the time?  A shortage of just one or two hundred calories a day over the long term is enough to derail a child. In fact, low body mass index is linked to more frequent, more severe infections in kids, as well as more difficulty with sleep, behavior, focus, and attention.

2 – Does your child hold it together through the school day, then blow up or show rage and reactivity once home?  Does this shift abruptly with a hefty snack? Check usual calorie needs for kids here, to see if your child is coming up short.  Check usual protein needs here.  You can also work with your provider to screen for bowel infections, and rule out inflammation from foods with food allergy and food sensitivity testing – both of these can drive mood swings, anxiety, and appetite in kids. If your in network provider isn’t familiar with thorough testing, this is my niche – schedule a free ten minute chat to talk to me!

3 – Got iron? Iron is key for learning, focus, attention, mood, behavior, sleep, and immune function.  Some children with autism don’t absorb or metabolize this typically; anemia and poor iron status are common problems for children with or without autism, across the US.  Balancing iron metabolism is crucial for kids. Ask your pediatrician to check ferritin, serum iron, and transferrin to get a sense of whether diet or supplements can help. Ferritin levels below 30 – though considered “in reference range” – usually correlate with lesser ability for focus, attention, and behavior – plus more frequent infections – in my experience. Since iron can become toxic if used incorrectly, don’t use iron supplements for a child without your provider’s input.

4 – Got pica? If your child puts non-food items in his mouth often, eats non food items, has oral tactile sensitivity for certain food textures, or has difficulty swallowing or tolerating food textures in his mouth, then a review of mineral intakes from foods or supplements is in order. These symptoms can signal problems like poor status for iron or zinc, or heavy metals exposures. Eating non-food is called pica, and is a classic flag for mineral imbalances. Learn more about pica here. Correcting mineral balance can dramatically improve behavior, mood, self regulation, anxiety, rageful reactions, and more.

5 – Gut biome – the bacteria populating your intestines – is crucial for digestion, absorption, and even immune function. Is your child dependent on Miralax or reflux medication? Needed antibiotics? These can disrupt that biome, and change how foods and nutrients are digested and absorbed. If your child isn’t able to pass comfortable stool daily without prescription medications, then screen for bowel infections or inflammation from foods. Many functional nutrition lab tests can define the biome in enough detail to direct treatments, so chronic constipation or diarrhea can be resolved. Normal passage of stools means optimal uptake of nutrients, and this means the brain gets what it needs to function every day.

6 – If you feel you’ve done it all and just want to throw in the towel, two thoughts: One, call me and let’s see if you really un-turned all the possible stones. Two, call me, and let’s discuss how to explore immune dysregulation (autoimmune reactions, immune deficiency) as an underlying piece of an autism presentation. Promising treatments are becoming more and more available and I am happy to pass these resources on to my patient families.

There are many other nutrition-detective steps I take in practice to bring children through assessment. We create a sequence that fits your family. In fact, nutrition intervention may be one of the least expensive and most beneficial tools you engage. I offer new patient families a six month, six visit Nutrition Transition package for at $1200 that maps the journey, from lab tests to supplements, foods, recipes, and meal plans. We move at a good clip and get results. I find discounted supplements and lab test fees where possible for my patient families, and throw in free copies of my books too.

Jumping out of sequence can backfire, which is why many families have mixed results when using nutrition care, biomedical tools, and special diets for autism. But working a methodical, professionally monitored nutrition plan may afford your child a few nice leaps, before you order up a $3500 battery of tests with an out-of-network doctor and pay thousands for six hours of his face time. For more info on sequencing, troubleshooting, and using nutrition-focused tools for autism, see Special Needs Kids Eat Right and Special Needs Kids Go Pharm-Free. And, call me!

Pediatrics: Terrible Diets OK For Kids With Autism

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Mac and cheese pizza. For real.

According to new research on growth, food intakes, and kids with autism, these kids tend to eat terrible diets, but this doesn’t affect growth or nutrition status.

Hmm. 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, 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 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 , 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 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.

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