Autistic for a Day

People often remark how articulate and clear-spoken our four-year-old son Zevin is. So, when just moments after the doctor pricked his skin with the needle, Zevin became a different person, clapping and flapping his hands as he tried to explain something, and making a high-pitched “eeeee” noise, it was both startling and disturbing. Normally a remarkably coordinated four-year-old, he began bumping into tables as he stumbled around the room. His cheeks and ears flushed and his lips became bright red.

And while this autistic-like symptoms were exaggerated and (thankfully) temporary, it was easy to see that this was a compressed version of behaviors we’d seen in varying spells in him before: the tense, aggressive energy, a whole different animal than the cheerful boyish tumult we welcomed.

We were in the allergists office at Northwest Center for Environmental Medicine, following up on a hunch that Zevin had more than just gluten intolerance. This was the second of three allergy tests for the day, but the most striking. The first was for soy, this second one for corn, and eggs was yet to come.

soy-corn-egg-allergy-reactionsThe morning long test began with a base-line pinprick: a tiny shot of glycerin in his upper shoulder, the control dose to ensure that any reactions we saw were not just due to needles or some other aspect of the test. Then came a dose of the allergen, followed by a ten minute observation of his behavior and skin reactions (at right), then another reduced dose of the allergen and more observation, and the cycle was repeated until the “no reaction” dose was reached.

His reaction to corn wasn’t a complete surprise: we’d already noticed that following meals with corn-based ingredients, he seemed to act wilder, obstinate and harder to reason with. We suspected it was corn, but it was so hard to tell because corn and corn derivates are ubiquitous in the American diet: 40% of all packaged goods contain corn derivates. As Michael Pollan puts it: if you are what you eat, most of us are corn.

More surprising was his reaction to eggs, which I’d personally been pushing on him as “the perfect protein”: he became limp, quiet and withdrawn, draping himself over Michelle. It would have been easy to believe he was just worn out from his corn-fed frenzy, but we knew him well enough to know that even an hour of frenzy wasn’t enough to wear him out this much.

Thankfully, the symptoms from the tests subsided, and we settled back at home to start planning next steps: a restricted diet and a course of desensitization (see The Allergy Buster in the New York Times) that would hopefully allow Zev to return to normal eating soon.

But as we ran over the clues we’d had over the years that some food allergy might be impacting Zev’s behavior and development, we kept coming back to an awful thought: what about all the kids who suffered from similar allergies whose parents didn’t know?

Imagine that your child has behavioral issues: maybe they’re acting out or maybe they’re withdrawn, maybe missing development milestones, having trouble with speech or aggression, or seem to be overly sensitive to stimulus and noise. Maybe you chalk it up to “that’s just the way my kid is”.

But maybe it isn’t. Maybe the food you’ve been eating yourself, day after day while you nursed, and then the food you’ve served for breakfast lunch and dinner, is causing a reaction in their body, in their brain, that is changing their behavior and development from what it “should be” to what “it is”.

The numbers of children diagnosed with autism, ADHD and food allergies have all been skyrocketing (see Diagnoses of Autism on the Rise, ADHD Seen in 11% of US Children, Food Allergies Among US Children). Some people think it’s just better (or overaggressive) diagnostic techniques, others think something has changed in our environment or food pipeline, or maybe some epigenetic shift caused by who knows what. It’s easy to see, though, how a persistent, system-wide allergic reaction in the body, or anything that changes how key nutrients are absorbed, could impact the brain development of a growing child.

2013-05-04 20.26.28The symptoms Zev was experiencing in that doctor’s office were a mixture of what would ordinarily be classified as autism or as ADHD: flapping hands, sub-par motor control, difficulty in focusing,  fits of irrational anger. His experience there was sudden and stark, because of the dose and the subcutaneous way it was administered, but a child with a similar allergy who ingested the allergen (corn, in this case), day in and day out, would experience a low-grade version of these symptoms all the time. Without the contrast to “normal” behavior, it would be easy to assume that that’s simply “the way my child is” and ignored.

Or maybe worse, assume he had a disorder, and medicate him.

In the short week since the test, and since we eliminated corn, soy and egg from his diet, we’ve already seen a calmer, more thoughtful, well-reasoned child (except when he’s tired, he is a four-year-old, after all). It’s been hard, but weighed against a lifetime of the alternative, we know it’s been worth whatever we have to do.

But we grieve for all the kids out there who may be on a path to special ed classes, medication or just tense, angry relationships with their frustrated parents.

What’s been most amazing is the number of people who seem to know that food allergies might be at the root of their children’s behavioral issues, but are unwilling to find out more, or to do something about it.

“I just couldn’t do it, it’s too hard to totally change the way we eat,” we hear, over and over.

I get it. Honestly, if it weren’t for Michelle, I wouldn’t be able to do it either. I’m not “doing it”. I only eat well, and Zevin only eats well, because she does the hard work to make it easy. And I’m grateful for that.

Sometimes I wonder: what if a doctor in a white lab coat told people that there was this medicine their child could take, and it would cure their kid’s ADHD or autism, and the medicine was delivered in this special food, but it was important for the medicine to work, that they not eat anything except the special food. Would people do it?

Of course, the ‘medicine’ is just good, wholesome food, without corn or gluten or dairy or whatever the kid was allergic to.

But maybe the key to that story is the doctor “giving them the medicine”. Most people don’t know where to start when it comes to remodeling their diet. I hope that’s what Michelle’s work (and workshop) will help address. If it can help even one more child live a different, better life than he would have, it’s well worth it.

 

[5/10/2013: I should clarify, since it may have been ambiguous, that Zevin does NOT have autism or ADHD, not even a little bit. He does has food allergies that we’ve been carefully studying and addressing. What I was hoping to convey is that based on his reactions to foods, it might have been mistaken for something larger, and, if left unaddressed, could possibly have led to something more permanent. And I hope that no child with a similar make-up is given a mistaken diagnosis.]

26 Comments to Autistic for a Day

  1. Lisa says:

    Thank you so much for putting down in clear, relative terms what is happening in your home so that others may read it and be moved to take action to help their children and surely, in turn, their entire families. This article instantly brings to mind thoughts of several children of my friends and, as a teacher, of so many students. I am forwarding this immediately to those whom I know it will help.

  2. Jaci VW says:

    Modern food is altering the health of our generation and the ones behind us. Diet as a cure for behavior, speech, and neurological symptoms is not “quackery”, as some may say. So much of our physiology is influenced by what we put into our bodies. Those who say that GMOs are harmless are either living in a land of denial, or have too much to lose to admit the truth. We live in an age of allergies and neurological disorders (two of my three kids suffer food allergies and are affected by neurological and developmental disorders), and it is NOT just a matter of better diagnosing.

    • Cyncha says:

      I agree Jaci!Thanks for posting! I have many allergies myself, jokingly saying, “I have 15 allergies. and only 11 are to food!”. Corn and egg whites are really awful; corn is everywhere, hidden, and SO difficult to get away from! While my son is said by the allergist to NOT be allergic to corn, these cheap corn sugars are everywhere, and I believe he has a “sensitivity” to corn. Citric acid, which one can find on many labels, can be made from corn. BeFoodSmart.com is a good resource to check certain ingredients from labels on. While I was just told by the school psychologist that I am too picky about foods I beg to differ. I would bet I know a whole lot more abut foods and the gauntlet one has to run to eat healthy, not necessarily “conveniently”! Also, good to know is the allergist “Doris Rapp”, from Buffalo. She may be retired, maybe not still with us-I don’t know, but she has books and has done so much for showing that allergies DO indeed affect children. Check out her name at the library. I keep my son away from food additives, and dyes, but so much harder is corn derivatives! I guess that makes me an extremest kook, but then I’m the one who gets to be on the receiving end of fits, and tantrums! I need to address this because it’s written into my son’s IEP that he is on a very restricted diet and that he is very thin (which both his parents were as children, thank you very much!) Does anyone have any strategies for dealing with our school psychologist, who until recently has been a good ally? I don’t want to come off in a defensive, or militant way, but there are reasons for both these things that are written into my son’s IEP. I also wonder if I can write into it myself, and how I would do this. Thanks to anyone with ideas for me.

  3. Jennifer Froemel says:

    I am going through this same journey for my son and myself today. I think parents need to be better aware that there are more things happening and investigate rather than just going the medical route!

  4. Katie says:

    I appreciate and respect your journey to health for your son and your experience as you depict it here. It’s a bit of a leap, however, to claim that all, or even most, or even a significant percentage of behavioral problems in kids are due to food allergies or intolerances. There is a lot of money and effort being poured into autism research; it would be wonderful if the solution were as simple as removing a few foods from their diets. That is a lot easier than most of the efforts that parents spend on and for their children with disabilities. Also, your depiction of physicians as drug-pushers is disrespectful to a profession which is by-and-large trying to help these kids.

    • Kathie Wilson says:

      I know many parents of children with autism, who WERE willing to change their entire diet to alleviate the symptoms of autism in their children – and in EVERY case, it has. I also know many parents of children with autism, who steadfastly adhere to their doctors’ advice, and in nearly every case improvement has been slow if it comes at all.

      I realize how difficult it is to change entrenched attitudes about ‘home remedies’, and realize that we really ARE what we eat. And I love the kinds of foods that my nephew, for example, will never be able to eat, without regressing back into the autistic behaviors that have COMPLETELY DISAPPEARED since his mother drastically changed his diet. We perceive these changes as a result of eliminating them.

      I was incredibly lucky with my sons’ health – neither of my kids was afflicted with any developmental issues, and they suffered little if any from allergies. But if my own son had had those symptoms, or had been diagnosed with either or both, I would hope to have had the same amount of tenacity and intrepidness as his mom, and do whatever it took to reverse the progression of the disorder.

      J. lost his autism diagnosis several months ago. His development is now on par with that of his developmentally appropriate peers in communication and social interaction, and his behavior has improved dramatically. He is no longer plagued with digestive issues, and he is an all-around happy little boy. I think even the possibility of that outcome, is worth removing certain foods from the family diet, at least on a trial basis.

      Why doesn’t everyone??

      • My 4 year old daughter was diagnosed with autism almost a year ago. We had tried a gluten-free and dairy free diet and saw only a very small improvement after 9 months. I’m so glad we didn’t stop there. We decided to try the Specific Carbohydrate Diet (very similar to GAPS), which is one part elimination diet, and one part digestive healing diet. It has taken time, but one year later, she is on the road to recovery. We are beyond grateful to have learned that taking care of food allergies/sensitivities/maldigestion problems can make such a huge difference for kids on the spectrum. This information is so worth sharing!!!!

      • Cheryl says:

        Becky that is awesome!

      • Cheryl says:

        I totally agree with you Katie Wilson.

    • Candi Duncan says:

      Katie, I don’t think they were implying that food is the cure for every child. It is the cure for their child and it needs to be taken in that context. They found the answer for their child and they are excited to share. I personally had to go the food route when my autistic daughter was out of control and IT DID help her. Though she was not “cured” of her autism the transformation in her behavior was clearly for the better and I to wanted to share what I learned. And as far as them being “disrespectful” of medical professionals, I think you need to stop and listen to what they are really saying. Specific foods were a major contributor to the autistic like symptoms of their son. They changed the food he was eating and he got better. This clearly cannot be denide. And the medical profession refuses to acknowledge this (as a whole…though some are coming around). All of the Dr.’s I talked to gave me no help. I had to figure it out on my own and they did to. This article is in no way trying to disrespect the medical profession as much as it is only bringing to light the truth of their ignorance at this present time. When I know more more about how to cure my daughter’s health and emotional problems then the “professionals”…well, it’s a little hard to put much faith in them. I’m sure they are as I am….frustrated that we had to figure it out on our own.

    • Melissa says:

      Dear Katie. For proof of these statements, please visit http://www.biomedheals.com/ and meet a little boy named Anthony Ruckman who has indeed been healed of autism spectrum disorder by diet and detox supplements. I watched him grow up on his family blog before his mother switched to this more public forum and I saw all his autism symptoms though videos and daily blog entries and I saw him start regular main-stream kindergarten this school year. 🙂

  5. Jordan says:

    Hey Katie: I certainly did not mean to imply that all, or even most, of behavioral problems in kids are due to food allergies. If there’s a phrase in there that suggests it, let me know and I’m happy to correct. Likewise, as I come from a long line of Western physicians, I do not believe nor do I think I was implying that doctors are just “drug pushers”.

    What I do think, and I what I think I wrote, is that there is a non-zero, significant number of children who’s problems are being treated with drugs, but could be solved through diet. If that’s true of even one child, and this post helps that child, I’ll consider my time well spent.

    What defines “significant” (since that’s where we may have a genuine disagreement)? I say even one.

  6. Good, Jordan – this article is a very good one for highlighting to parents the link between a sensitized immune system and autism. However, it is very important that parents understand the underlying cause, so that existing children suffering from this affliction don’t become worse and future children can also be saved from it.

    So the question must be asked – what is it that sensitizes the immune system and is experienced increasingly frequently by children today (and now has been also by their parents and grandparents too, which increases the sensitivity of the children), and far more than a few generations ago (before autism was first recorded at all, 70 years ago)? Surely the most obvious answer is a procedure that is widely administered and is deliberately designed, e.g. by the inclusion of the heavy metal aluminum, to sensitize the immune system (and well documented to do so), and that is vaccination.

    Autistic symptoms simply do not start developing out of nowhere in previously normal unvaccinated children.

    Despite the scourge of infectious diseases having long past, indeed even essentially by the time the first few vaccines (that are still given today) began to be administered on a large scale 70 years ago(1), the majority of parents today are still being hoodwinked into crediting the pharmaceutical industry (the same one that was implicated for Nazi atrocities during WWII(2)) with its vaccines (and antibiotics), and thinking that their children are somehow vulnerable unless they receive these repeated deep invasions from the State.

    Meanwhile, the unsensitized children have more robust health all round, including with respect to resistance to infection(3). Despite the occurrence of outbreaks in 100% vaccinated populations, disease notifications(4) in unvaccinated children are zero for some targeted diseases and almost zero for the rest, except for whooping cough and chickenpox, but the vaccines for those diseases are now being admitted to lack effectiveness for preventing infection(5) anyway. (Parents ought to also be aware of observer bias(6) and vaccine-altered disease symptoms artificially reducing the diagnosis rate in the vaccinated(7))

    Those sensitivity responses described in this article are of no benefit in protecting a child, and neither is any (also vaccine-induced) sensitivity response that occurs in a vaccinated child upon exposure to a targeted disease. The response is at best unhelpful, and at worst, inappropriate and potentially dangerous, e.g. “atypical measles”(8), which only occurs in vaccinated children. A normal, unvaccinated, properly nourished child responds normally and effectively to infections, often without even showing any symptoms, and the child even benefits from the exercise (unless the process is badly managed), just as with other forms of exercise.

    References:
    1. http://childhealthsafety.wordpress.com/graphs/
    2. http://en.wikipedia.org/wiki/IG_Farben_Trial
    3. http://www.vaccination.inoz.com/unvaccinated.html
    4. http://www.cdc.gov/mmwr/mmwr_nd/
    5. http://www.news.com.au/breaking-news/states-ending-free-parent-whooping-vaccine/story-e6frfku0-1226350174856
    6. http://www.ncbi.nlm.nih.gov/pubmed/9755264
    7. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1082800/pdf/0046-04.pdf, pg 358, col. 2
    8. http://www.medterms.com/script/main/art.asp?articlekey=6593

  7. Katie, I’m sorry you’re offended, but the poster is correct. Don’t get personally offended or think that your child does not have ANY medical issues and ONLY behavioral problems/ADD/ADHD/Autism without any rhyme or reason. Investigate biomedical approaches and test your child with the poster’s approach as well as IgG and IgE bloodwork and then tell us all about how very healthy your neurologically impacted child is. Please and thank you.

    I’m a mom to a boy who was diagnosed autistic and to “get him on SSI, because he’s going to be disabled for life” before his 2nd birthday. He will be 4 on Friday and he is neurotypical. Much of the credit came from addressing his personal medical needs, including an autoimmune disease and changing his diet to whole foods prepared from scratch and avoiding inflammation-causing foods like grains and dairy.

    I know this will upset you to hear that your child is NOT “just autistic” and that there is no hope, as some idiot in the medical field has told you, but you CAN improve your child’s neurological functioning and overall well being with food, allergy testing, extensive labwork and addressing the complex medical issues and gut dybiosis that exists in so many of our children right now.

    1 in every 6 children has a chronic illness – asthma, autism, allergies, diabetes, cancer – CDC 2011.

    BELIEVE that there is hope, and there ARE answers out there for your child if you fervently research, constantly question and never give up trying to help them prior to medicating them. Don’t give a pill, give nutrition, give the right things to them that they need. Get answers first, then go from there.

    Check out the Great Plains Laboratory for an Organic Acids Test – it’s just urine. Or alletess or alcat for complex IgG blood testing of foods.

    You can do this, don’t resign yourself to the fate some doctor has told you, demand all that your child deserves from their life. Check out tacanow.org – they have info on biomedical interventions for children on the autism spectrum and beyond.

    • Absolutely! Like Denise, I’ve seen it with my own eyes! A ‘simple’ infraction of foods he can’t tolerate can turn my mostly recovered (as of Jan 2012 no longer meets criteria for autism) son into a child with severe autism (non-verbal, stimming, toe-walking, no eye contact, aggression, etc).

      Just as research has shown that diet/preservatives/etc can bring on adhd behaviors, there is some that show it can bring on autism symptoms! Autism is simply the behaviors. You have to investigate in order to find the cause!

      Ditto TACANOW.org as well! The help, support, guides are there for you if you decide to seek it!

      • Cheryl says:

        TACANOW.ORG is WONDERFUL!
        I agree with both of you 100% (Jackie and Denise)
        So nice to see parents on the right track.

  8. nhokkanen says:

    To Katie:
    Autism research has more to do with politics and researcher preference than area of need. Also, doctors are hamstrung by their medical trade unions that divert attention from iatrogenic sources, such as vaccines. Medical error is the nation’s 3rd largest cause of death; reputations and income are on the line.

  9. Denise says:

    An injection to test for allergies isn’t always reliable. Better would be to give him eggs from pastured hens that are free-range and not fed GMO and then see if it is really the eggs or what the chickens are fed.

    • Cheryl says:

      I thought the same thing!
      I went to a conference with Dr Sears as one of the speakers and he said there has been MANY times a patient’s test will come out clean no sign of allergies or sensitivities. But he took the patient off of gluten and casein and they showed MASS improvements.

  10. Carmen says:

    Thank you for sharing on this topic. We have lived this very thing with our child and have experienced the complete, life changing turnaround that came from dietary intervention and other natural means. We started with the Feingold Diet. http://www.feingold.org. After several years following it with amazing success, we went on the GAPS diet and my daughter experienced a remarkable healing. Now at age 10 she can tolerate almost any food with no ill effects. It has been a difficult road to travel for sure. It takes a lot of sacrifice. But every bit of it was worth it to have my child who is now healthy and happy.

  11. Nancy R Merrill says:

    As an adult I am lactose intolerant. High Frutose Corn syrup causes the same reaction as dairy products. My health is excellent. I eat pork/beef about once a month if then. No fried foods. No soda pop or fast food. There is so much junk in food. Causes diabetes, high blood pressure, bad health. FDA allows junk in our food. Schools serve junk food to the kids. The younger generation will never live as long or be as healthy as the baby boomers. Altho alot of baby boomers have bad health from eating junk. Research your health and food. The doctors are getting kickbacks for pushing certain meds. Research yourself if you care about your health!!!

  12. Muriel Hykes says:

    I took my sons to see Dr. Rapp, another famous clinical ecologist, when they were very young after watching her on the Donahue Show. We saw violent, screaming, thrashing from strawberries, wheat,depression from milk, pretty much anything that might get a kid put on dangerous psychotrophic medications these days. The boys were treated with sublingual drops of the allergens and continued until Blue Cross of NE PA decided they didn’t want to pay for it anymore.

    I recommend everyone who has money read Is This Your Child by Dr. Rapp and seek the services of a clinical ecologist instead of drugging your child.

  13. STEPHANIE HARVEL says:

    I FINNNNNALLY JUST BREATHED A SIGH OF RELIEF…AND ACCEPTANCE. WE WERE NEARLY RAMRODDED INTO AN AUTISM DIAGNOSIS AT 12 MONTHS! I JUST KNEEEEEW THERE WAS SOMETHING ELSE GOING ON AND WITH AN ELIMINATION DIET, ALL OF THESE ‘SYMPTOMS’ LITERALLY DISAPPEARED. WE ARE STILL BEHIND ON SPEECH…LIKE COMPLETLEY..BUT HE IS CATCHING UP…AND LOVING HIS MAMA…WHICH HE WOULDNT DO BEFORE..AND PLAYING…AND SMILING…THIS WAS AN AMAZING READ. YOU ARE SO RIGHT. WHAT IF SOMEONE DOESNT KNOW….XOXOXOXOXOXOXOXO

  14. Teah says:

    I’m glad that you are looking at food as being the potential source for what ails your child, but I wanted to mention, as some of your readers have already commented, that it may not be the “food” per say, but the fact that almost all food now is genetically modified. From the yeast cultures that makes our cheese, to our grains like corn, and our fruit like mango’s, and soon our fish. In other words, it may not be corn, but the fact that corn is no longer corn anymore, but a strange and altered shadow of what it used to be. I would suggest looking into this. I myself have had my own health challenges and I was only able to really turn things around all together when I started to eat strictly organic and make most of my food at home, in additional to the other positive changes I made in my life. I still struggle with this because the demands on my time are many, and the kitchen has become the room I spend more time in than any other, but it has become a necessity, and no longer a choice. My best wishes to you and your family in this journey. Take care.

  15. THANK YOU, THANK YOU, THANK YOU for sharing this information!!!! So many people and families suffer for years before identifying a food allergy as an underlying cause of their problem-whatever it may be for them. Food allergy issues can create such a wide variety of reactions. Many parents find it astonishing to discover something as seemingly harmless as an egg can create such dramatic responses in their child.

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