Summary: It is time to share what a successful professional autism dietary intervention program can look like for autism management.
“Special Diets and Nutrition For Autism: Why They’re Cost Effective,” is such an interesting read from Judy Converse MPH RD LD, a registered dietitian since 1989, who then self taught herself, beginning in 1996, diet impact for her son’s growth, feeding, and developmental challenges at birth. She then expanded training to learn biomedical intervention for autism, becoming a DAN practitioner, and ultimately provided instruction in nutrition for Autism Research Institute, US Autism and Aspergers Assocation, National Autism Association, and many others. She has lectured for many local and national audiences about the profound impact nutrition and a healthy gut have on the developing brain as well as authoring three books and created the first web-interface accredited learning module for health care providers on nutrition and autism in 2007.
Actually, there is a lot of science on the success of dietary intervention for autism:
Readers of my work are no stranger to the published science and ongoing studies looking at the food – autism interactions. Some of the latest of such are summarized in posts:
- “FOOD MANAGING IBD & AUTISM: THE STUDIES,“ (scroll down to “Now for the Food Studies”) and read “SCD and other Studies for Autism,” which includes the Johnson Center for Child Health & Development: Research ongoing evaluations:
- SCD in 20 children ages 2-6 years with gastrointestinal problems that have been diagnosed with autism. Enrollment is now closed; they will eat a SCD diet for 16 weeks (all food is provided) and blood, stool, and questionnaires will be obtained. The contact for more information on this study is intake@johnson-center or call 512.732.8400.
- Performing a retrospective study of 600 children with a diagnosis of autism, ages 2-21 years, who were seen on an outpatient basis at the Nutrition Clinic at Thoughtful House Center for Children in 2009. The will compare the intake of calories, carbohydrates, protein, fat, vitamins, and minerals from food at baseline and follow-up dietary consultations and assessments. The prevalence of dietary inadequacy of these nutrients in this patient population diagnosed with failure to thrive (FTT) will also be evaluated. Enrollment is now closed.
- This prospective treatment study is enrolling up to 50 children, ages 2-21 years, diagnosed with ASD with documented evidence of ileitis, colitis, and/or duodenitis, and lymphoid nodular hyperplasia. They are evaluating the tolerability and efficacy of an Elemental Diet in the amelioration of gastrointestinal symptoms by conducting a prospective open trial of administering a nutritionally adequate elemental diet in this patient population. They will quantify symptomatic changes in GI presentation as well as quantify anthropometric and biochemical changes. Enrollment is now closed.
- Assess bone mineral density status for 80 boys, ages 4-8 years, diagnosed with autism or neurotypical controls. This study will determine if bone mineral density is correlated with: nutritional status, vitamin and mineral levels, symptomatic GI presentation, and antropometric measurements. Enrollment is now closed.
- Collaborating institutions include:
- The Johnson Center for Child Health & Development : Research
- Lawrence Livermore National Laboratory
- NIH National Human Genome Research Institute
- University of Arkansas
- University of Texas – Southwestern
- University of California – Davis/MIND Institute
- University of California – San Diego
- University of Kentucky
- University of Seattle
- Wake Forest University
- “DIGESTIVE ENZYMES & DISEASE W/FOCUS ON AUTISM,“ (upper gastrointestinal endoscopy with biopsies) found insufficient digestive enzymes in autism, citing:
- 2011 Harvard Medical School large study (intestinal biopsy of 199 children and adults with autism 10% have maltase deficiency, 16% had sucrase deficiency, 62% had lactase deficiency,
- “Autistic disorder and gastrointestinal disease”, Horvath et al, Current Opinion in Pediatrics 2002, 14:583–587, for 90 participants: 49% had at least one deficient enzyme activity, and 21% or more had deficiencies in two or more disaccharidase enzymes. The most common deficiency was lactase and maltase deficiencies followed by low activity sucrase, palatinase, and glucoamylase.
- Another study, Gastrointestinal abnormalities in children with autistic disorder”, Horvath, et al, 1999, for 36 participants: 25 (69.4%) had Grade I or II reflux esophagitis, 15 had chronic gastritis, & 24 had chronic duodenitis. Additionally the number of Paneth’s cells in the duodenal crypts was significantly elevated in autistic children compared with non-autistic control subjects, and low intestinal carbohydrate digestive enzyme activity was reported in 21 of 36 children (58.3%), although there was no abnormality found in pancreatic function and 75% of the autistic children (27/36) had an increased pancreatico-biliary fluid output after intravenous secretin administration.
- The “1st International Symposium on the Microbiome in Health and Disease with a Special Focus on Autism”, Little Rock, Arkansas, June 2014, noted micronutrient deficiencies (low biotin and Vit K) in autistic.
- And this most recent post, “2 AUTISM STUDIES ARE SEEKING PARTICIPANTS: MICROBIOME & CONSTIP,” which shares a new food study, funded by Autism Speaks, looks are remedying chronic constipation and the effects on autism symptoms (and another study noted on this post looks at the microbiome).
- My favorite autism researcher, Paul Whiteley, is also a member of ScanBrit, which was/is a meeting of minds between the group he works with and other research groups based in Denmark and Norway, who want to experimentally examine the question of whether a diet devoid of foods containing gluten and casein might be able to impact on the presentation of autism in children. This post on his blog entitled “Autism and the GFCF diet: ScanBrit episode 2″ speaks to what seems to be working for many autism and notes“These preliminary observations on potential best responder characteristics to a gluten- and casein-free diet for children with autismrequire independent replication” “That sentence, taken from a recent (pre-print) publication I was very peripherally involved in writing, isprobably the most important thing to take from the paper by Lennart Pedersen and colleagues* and certainly is a message that I would be very keen to promote.”
- Another Whiteley post, “Food and ADHD: lessons for autism?” is worth a read as it also pertains to autism since “we know that autism and ADHD can occur alongside each other and the association seems quite strong. We also know that some people with autism seem to be affected by diet; whether as a consequence of co-morbid conditions such as coeliac disease or through less well-defined connections. “
- In fact, Whiteley is also the author of the book “Autism: Exploring the Benefits of a Gluten- and Casein-Free Diet: A practical guide for families and professionals Paperback” – April 30, 2014 which is an invaluable resource. The ScanBrit initiative found autism improvement on a gluten-casein-free diet along with reduced ADHD (common in autism) with the most pronounced benefit occurring for those aged between 7 to 9 years.
- Last, Whiteley authors two blogs: Questioning Answers is where he describes and discusses various research into autism spectrum and related conditions. Gutness Gracious Me is where he discusses various gastrointestinal research. Nuff said there about how important this expert feels diet is to autism management.
You’ve seen the slide below but it bears repeating here as it demonstrates the success of eliminating certain food groups for autism:
Despite all the above… diet intervention for autism, in 2014, is still NOT recommended mainstream, which is incredible realizing that 1 in sixty-eight US children have autism (with prevalence increasing alarmingly)
This 2014 paper, Practice Parameter for the Assessment and Treatment of Children and Adolescents With Autism Spectrum Disorder continues to NOT recommend dietary intervention for autism (despite noting that 90% of parents use complementary and alternative medicine for such) and instead focused on teachers, behavorial psychologists, and speech and language pathologists support. The rationale was (see the paper for the actual citations):
“Although most alternative or complementary treatment approaches have very limited empirical support for their use in children with ASD, they are commonly pursued by families.155 It is important that the clinician be able to discuss these treatments with parents, recognizing the motivation for parents to seek all possible treatments. In most instances, these treatments have little or no proved benefit but also have little risk.7 In a few instances, the treatment has been repeatedly shown not to work (e.g., intravenous infusion of secretin156 and oral vitamin B6 and magnesium157[rct]), or randomized controlled evidence does not support its use (e.g., the gluten-free, casein-free diet,158 ω-3 fatty acids,159 and oral human immunoglobulin).160[rct] Some treatments have greater potential risk to the child directly (e.g., mortality and morbidity associated with chelation161[cs]) or from side effects owing to contaminants in “natural” compounds or indirectly (e.g., by diverting financial or psychosocial resources). For a detailed review of alternative treatments, see Jacobson et al.162 and Levy and Hyman.163 Although more controlled studies of these treatments are needed, it is important that the family be able to voice their questions to health care providers. Families may be guided to the growing body of work on evidence-based treatments in autism.164 “
Even EWG has updated the Dirty/Clean list to include organophospates due to studies such as Neurodevelopmental disorders and prenatal residential proximity to agricultural pesticides: the CHARGE study, which found that “about one-third of CHARGE study mothers lived, during pregnancy, within 1.5 km (just under 1 mile) of an agricultural pesticide application. Proximity to organophosphates at some point during gestation was associated with a 60% increased risk for ASD, higher for third-trimester exposures, and second-trimester chlorpyrifos applications. Children of mothers residing near pyrethroid insecticide applications just before conception or during third trimester were at greater risk for both ASD and Development Delay (DD), with odds ratio ranging from 1.7 to 2.3. Risk for DD was increased in those near carbamate applications, but no specific vulnerable period was identified. CONCLUSIONS: This study of ASD strengthens the evidence linking neurodevelopmental disorders with gestational pesticide exposures, particularly organophosphates, and provides novel results of ASD and DD associations with, respectively, pyrethroids and carbamates.”
I actually had one autism parent tell me, “Good one!” when I recently suggested they try gluten- and casein-free protocols.
What are the finanacial costs of not pursuing dietary intervention for autism?
Judy Converse MPH RD LD, specializes in integrative, evidence-based nutrition for babies, kids, and teens since 1998. Her practice, “Nutrition Care for Children” specializes in supporting those who have failed with conventional medical measures for food allergy, feeding/growth concerns, feeding clinics, tube feeding, asthma, ADHD/ADD, autism, Asperger’s syndrome, mood concerns, PANDAS, or seizure disorders. She incorporates tenets of many disciplines, including Weston-Price, organic foods, special diets (GAPS, SCD, Paleo, GF CF, LOD), and judicious use of supplements and herbs.
Her post, “Special Diets and Nutrition For Autism: Why They’re Cost Effective,” provides some startling typical long term costs for usual interventions for a child with autism (based on fees at the STAR Center in Denver, a clinic that uses occupational therapies to address feeding problems common in children with autism):
* RDI is Relationship Development Intervention, one of many social skills teaching tools for persons with autism.
She notes that the life long cost of supporting a child with autism is now estimated to run into the millions of dollars.
What the medication costs alone are:
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.
What dietary professional intervention for autism can look like (excerpted from “Special Diets and Nutrition For Autism: Why They’re Cost Effective“):
Judy Converse’s goal is to identify and create a nutrition plan for your child which you can work with for the next year or two, in six visits for $1,200. Each visit entails about an hour or so and occurs at monthly intervals for six months. There is email support in between visits. At the end of six months, you will know:
- What nutrition pieces are most likely to enhance progress for your child and have a plan to use them, from then on,
- What to make for dinner and where to find the recipe,
- What supplements help your child,
- How much food your child needs, what foods are best for them, and how to gauge if this is working or not, and
- What lab tests you may need to do next.
What you won’t need to do:
- Spend time in my office twice a week for years at a time,
- Have her come to your house to do therapy with your child. Following the six month consultation, she is done. If you want to check in two or three times a year after that to touch up your child’s care plan, great.
- 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.
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.
- 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.
Some clues for those that were unsuccessful in incorporating nutrition strategies for autism, as to what does NOT 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,
While I have not read Converse’s book Special Needs Kids Eat Right, you may want to consider it if you are incorporating nutritive support for your child. Note: I also have no personal experience with the “Nutrition Care for Children” practice, but I will say that I liked what I saw on the website and would very much consider contacting them if it makes sense for you.
I only wanted to share with you a professional’s insights into what seems to work for this groups autism clients, and what doesn’t work I thought equally thought provoking, for successful dietary intervention.
Last updated: March 23, 2016 at 5:28 am for SEO optimization.
In health through awareness,