There is plenty of banter out there about whether using nutrition tools for kids with autism – including special diets – is an essential task, or a waste of time. Just last week, one of my own patients was told at Denver Children’s Hospital that it’s the latter. This sentiment is standard issue at most any major urban children’s hospital as well as most mainstream pediatrician’s offices. Another mom told me that her pediatrician said the American Academy of Pediatrics “does not recommend nutrition for autism”.
That really is a shame. I’ve watched kids lose an autism diagnosis in my practice over the years, with targeted nutrition intervention. Data show that using just one tool – a gluten free casein free diet – can make “significant improvements”, to quote one study from 2010 (it was even blinded, hard to do with food). If you place the phrase “gluten autism” into Google scholar, some seven thousand links pop up. If your doctor is telling you there is not enough research on this topic, the fact is, your doctor is not reading enough. There are studies, some poorly done, some tightly run.
This is not to even mention the dozens of other nutrition measures that may make or break strong progress for a child with autism features. Typically, in my practice, children need a series of nutrition adjustments and supports, within a closely monitored time frame, to feel and function better. GF CF diet may be a component of the whole picture, but is rarely the whole story.
Why the confusion, why the nay-sayers at our highest pediatric health care institutions? The answer is that nutrition assessments are generally not offered to children with a new autism diagnosis. Parents are left to navigate what might be a complex blend of nutrition, immune, and GI problems on their own. Not cool. All kids are different, and all kids need their own nutrition work up to identify what will work, and what won’t. If your providers haven’t done this yet for your child, they can’t truthfully tell you it won’t work. In this 2012 study on GF CF diets, the authors stressed that “various intricacies related to diet implementation and GI and immune factors” need sorting for each child with an autism diagnosis, to discern potential responders from non-responders. This is exactly what I do in my practice, for each child I meet.
But I digress. The real point here is not whether nutrition helps children. We know it does, whether a child has autism, cerebal palsy, or purple polka dots. In other words, it does not matter what a child’s developmental diagnosis is. There is always room to investigate if nutrition will make a difference for that child. And the good news is, it is relatively cheap to do – compared to all the other things you will spend money on, if your child has an autism presentation. Here are typical costs for usual interventions for a child with autism (click to enlarge).
* RDI is Relationship Development Intervention, one of many social skills teaching tools for persons with autism.
** Usual medications for autism can include Risperdal, Abilify, antidepressants, anxiolytics, seizure medications, or stimulants. Poly-pharmacy, that is, prescribing multiple psych meds for one patient, is common with an autism diagnosis. A 30 day supply of Abilify cost $1300 in Colorado in November 2014. Without health insurance, paying for these medications can easily run over $10,000 per year.
***Based on fees at the STAR Center in Denver, a clinic that uses occupational therapies to address feeding problems common in children with autism.
Each of these interventions, except using psych meds, requires weekly, twice-weekly, or daily visits with a therapist. That is what makes them so incredibly costly. And, they are open-ended prospects – that is, they don’t end. Children with autism features may continue to need rehabilitative or training services for as long as they have autism features, or for as long as you can pay for it. The life long cost of supporting a child with autism is now estimated to run into the millions of dollars. How can you afford to add nutrition?
Maybe you can’t afford not to! No matter what therapy your child is using, he has to be healthy to obtain benefits from it. A child who is in pain, has chronic inflammation, malaise, headaches, stomachaches, or missing nutrients that are essential for optimal learning will not learn as well, period. This is an old tenet that spawned the federal school lunch program (love it or hate it) back in the 1960s. What I repeatedly observe is that when a child’s body is freed up from inflammation, toxicity, poor growth patterns, or weak nutrition, they start to fly through those extra services. They also stop needing them so much.
A six month nutrition intervention program costs $1200 in my practice – cheaper than everything in the table above. This buys six consultations for an hour or so each, at monthly intervals for six months, as well as e mail support from me in between visits. At the end of six months, if we move at the pace I create for your child, you will know what nutrition pieces are most likely to enhance progress for your child, and you will have a plan to use them, from then on. You will know what to make for dinner, where to find the recipe, what supplements help your child, and what lab tests you may need to do next. You’ll know how much food your child needs, what foods are best for them, and how to gauge if this is working or not.
My goal is to identify and create a nutrition plan for your child, the one you can work with for the next year or two, in six visits, for $1200. You don’t have to spend time in my office twice a week for years at a time. I don’t have to come to your house to do therapy with your child. We’re done. If you want to check in with me two or three times a year after that to touch up your child’s care plan, great. But, nutrition interventions don’t require repeat visits week after week, year after year. They aim to quickly to identify nutrition problems that can impede your young learner, then implement strategies to eliminate those problems. There is some trial and error, as is true for any intervention your child is using. But there is not open-ended spending and arduous, slow progress – unless, of course, you want to stretch out your nutrition services to a pace so slow that they may not yield a benefit. That is why I offer a discounted program to complete six visits in six months: The pace matters.
Is there insurance coverage for this? That depends on your insurance plan, and on your child’s nutrition diagnoses. A diagnosis of “autism” never triggers nutrition services coverage. But, growth failure or failure to thrive can trigger services with a registered dietitian such as myself; many kids I meet have weak growth patterns, and this is how we code the care. We are, after all, correcting that. Many kids I meet have other problems that insurance may allow nutrition visits for, like anemia, mineral deficiencies, feeding problems, food allergy or intolerance, and so on.
What about other costs? You may have to pay for lab tests that your doctor didn’t want to order, or your insurance didn’t cover. You will likely have to buy some different foods, and this will change your food budget. And I usually recommend supplementation for most kids I encounter with autism features; they are eating such poor diets, are saddled with such disrupted gut biomes, or have so much inflammation that a few hand-picked naturopathic supports make them feel, learn, sleep, poop, eat, or function a lot better. Those come out of your pocket too.
As for lab tests, some of these may be accessible within your insurance networks or with insurance coverage. I always endeavor to find that path for families if possible. It doesn’t always work out that lab tests get covered. But I always work prudently to suggest only lab tests that will truly yield a game-changing bit of information for a child’s care plan.
What about all the stories of families who spent thousands on nutrition tools, to no avail? Here’s just a few examples what doesn’t work:
• Embarking on a special diet with no baseline nutrition assessment or lab data to tell you what might work
• Removing some but not all gluten
• Removing just gluten but continuing to use dairy and soy
• Removing gluten, dairy, and soy but not assessing or supporting gut biome (bowel infections)
• Using an elimination diet without enough total calories, total fat, or total protein
• Removing gluten, dairy, and soy but relying on processed, sugary foods instead of whole, real food
• Leaving mineral deficiencies or toxicity uncorrected
• Using supplements without professional guidance (wrong dose, wrong product)
• Spending thousands on lab tests out of pocket, that may not make meaningful changes to your child’s care plan
You can skip all those pitfalls, and many others I describe in detail in my book Special Needs Kids Eat Right, and get right to the point with a monitored, targeted, evidence-based nutrition intervention. Set up an appointment with me and let’s get started!
Thank you for posting this information. I shared much of your insights at today’s posting: “A PROFESSIONAL DIETARY INTERVENTION PGM FOR AUTISM,” http://biomeonboardawareness.com/a-professional-dietary-intervention-pgm-for-autism/
Thanks for sharing! Hope it is useful. – J.