Marks Daily Apple
Serving up health and fitness insights (daily, of course) with a side of irreverence.
12 Jul

Autism: A Brain or Whole-Body Disorder?

LoRes 2You could say this post is a long time coming. In the last few years, I’ve lost count of the huge number of emails I get from parents with kids who have special needs either asking for advice or explaining how The Primal Blueprint has made a significant difference for their children. These are parents who love their kids for all their abilities and differences and who want to explore every reasonable lifestyle intervention they can to make their kids’ lives everything they can and should be.

I’ll state the obvious here. I’m not a disability expert, but I’ve been moved and motivated by these parents’ emails. From a general health perspective, I’ve wondered how our modern lives could be contributing to the epidemic. Likewise, I’m curious how research can illuminate potential benefits of lifestyle interventions. What is the biological picture behind the dysfunction in these conditions, and how can biology be harnessed to restore functioning? A recent approach focused on the whole brain and whole body is asking those exact questions – and finding answers.

Like most people, I have friends and acquaintances who are raising children with developmental or behavioral disabilities. Some of us here are raising children with these conditions. Some of us have nieces or nephews, family friends, or neighbors with these disabilities. Others in the PB community have these disabilities themselves. Regardless of our personal connection, we’ve all heard about the skyrocketing rates of developmental and behavioral disabilities like autism and ADHD. Recent studies show one in six kids in the U.S. has been diagnosed with a developmental disability – mostly resulting from the spike in autism and ADHD. There’s general agreement now it’s not solely a matter of improved diagnosis, and few anymore argue that it’s purely a genetic phenomenon. Simple math negates the possibility that a “genetic” condition would spike in the span of less than half a generation. Since 1995, autism alone has gone from a rate of 1/3300 children to 1/88 children. Prevailing opinion now connects the rising prevalence of these conditions with a confluence of some kind of genetic vulnerability with pivotal environmental factors that somehow set off this genetic potential.

Enter the growing focus on not just “whole brain” but even “whole body” research and intervention for these kinds of disabilities. Our bodies are incredibly complex systems operating with an intricacy conventional medicine is just beginning to grasp. Experts are increasingly applying these principle to the study of autism, ADHD, and other developmental and behavioral disabilities. They’re looking at elements as diverse as gut profiles, neurological connectivity, and gene expression. A picture is emerging as researchers study the surge of these conditions. The “genetic” root is relatively seldom the traditional, identifiable pattern in family lines. Rather, it appears many of these children have inherited a genetic risk factor characterized by a heightened sensitivity to “assaults” on the system from toxins, infections, and other environmental influences. As Nancy Minshew, a University of Pittsburgh professor of psychiatry and neurology explains, “Genes do not code for diagnoses. They code for proteins, which then go about creating an effect.” In other words, a cycle is set in motion. Is it possible to stop the cascade that unfolds and even reverse it – at least in part?

A New Focus for Autism Research

Dr. Martha Herbert, a Harvard pediatric neurologist who has studied autism for seventeen years, believes it can be done. She began research into autism with the same genetics-focused approach common to the field. In her words, she quickly found the picture to be much more complex. In her recently published book The Autism Revolution: Whole-Body Strategies for Making Life All It Can Be, Dr. Herbert explains how addressing basic coexisting medical issues and optimizing overall health can positively and sometimes dramatically impact the symptoms associated with autism. I’d definitely recommend Dr. Herbert’s book to anyone interested in learning more about a biological treatment approach to autism.

Initially interested in comparing MRIs of her patients, Dr. Herbert began to see an interaction of neurological functioning with other physical issues like poor digestion, low muscle tone, fatigue, frequent infections, nutritional deficiencies, and food allergies. She found that “treating health” ended up treating autism. Herbert describes the series of “vicious cycles” that often plague those with autism as one of “genetic glitches, oxidative stress, mitochondrial dysfunction, and weakened repair systems.” Biologically based treatment, she asserts, can support basic cellular health, aid neurological balance and connectivity, and promote healthier gene expression. It’s a systems biology approach that appreciates the interactions – both big and subtle.

In the meantime, experts were finding – and confirming – that seemingly unrelated factors like fevers or the use of certain steroids or blood pressure medications could almost instantaneously dial back autistic symptoms. These instances – as well as the basic progress of many individuals on the spectrum – suggested autism was perhaps more of a flexible “state” than a fixed “trait.” If this was possible, what could be done safely and systemically to take advantage of this potential fluidity?

Dr. Herbert outlines a whole host of lifestyle based suggestions surrounding diet, toxin free living, supplementation, sleep, sensory exposure, stress, and other daily factors. There’s too much to explain here, but let me summarize a few of her central points and put it in context for those who live Primally.

Nutrition Is Key

However it shakes out in the chicken versus the egg picture, individuals on the autism spectrum are prime targets for nutritional deficiencies, yet they’re more in need of nutrients than their typically functioning counterparts. As Dr. Herbert and others have found, individuals on the spectrum show signs of oxidative stress and impaired cellular dysfunction. Dr. Herbert explains, for example, that mitochondria dysfunction is much more common in those with autism than it is in the population as a whole. Research suggests a third of those with autism have mitochondrial dysfunction. As I’ve noted before and as Herbert explains, mitochondria are the energy centers or “furnaces” for cells. If your mitochondria are choking through their day, so are you. Fueling these furnaces means feeding them well. B-vitamins are critical as are minerals like magnesium and zinc. Not surprisingly, these are common deficiencies in many people on the autism spectrum.

Likewise, research shows basic toxin and cellular waste removal may not be as efficient in individuals with autism. Antioxidants are essential here, particularly the heavy hitters like vitamins C and E as well that powerhouse glutathione. Nutritional deficiencies mean the building blocks for glutathione (which the body produces itself) are in short supply. When glutathione levels are inadequate, a whole host of vital processes feel the impact. For one, the body can’t effectively dispose of cellular waste, a condition that then further feeds oxidative stress. Among other impaired activities is methylation, which is involved in producing neurotransmitters, managing gene expression, and creating functional cell membranes.

Dr. Herbert advises getting a full nutritional panel, eating a nutrient rich and clean (e.g. organic, grass-fed, “caveman” – yes, she really says this) diet, supplementing with oversight from a qualified physician with experience in autism disorders, and using Epsom salt baths to help the body detoxify in a safe and convenient way. Her dietary and supplementation recommendations are too complex to fully describe here, but some key nutrients she notes include B-vitamins, zinc, vitamin D, selenium, EPA, and DHA. The irony is, of course, that these children’s diets are often more likely to be deficient because of sometimes extreme sensory aversions to the taste, smell, texture, or even appearance of certain foods. In yet another example of vicious cycle, nutritional deficiencies (e.g. zinc) can contribute to these sensory aversions. She suggests correcting deficiencies and taking advantage of feeding clinics and sensory therapies to expand food tolerance.

Neurologically speaking, the connections between parts of the brain in people with autism, she found, are weaker than they are in typically functioning individuals. Other research suggests people with autism show hyperlocal connections, a concentration of connections within the brain – generally in the frontal cortex, and weaker “distant” connections throughout the whole brain. It began to make sense, Dr. Herbert suggests, that people with autism often exhibit lower functioning in complex, neurologically integrated tasks like language and socialization as well as a heightened sensitivity to sensory stimuli.

Options like music and certain play therapies cultivate connectivity because they use multiple sites in the brain simultaneously, but Dr. Herbert also stresses the importance of nutrition for neural health. She homes in on the role of astrocytes (glial cells), which act as the “interface between body, brain, and environment.” If they’re unable to perform their duties, here comes the cascade of neurochemical imbalance (including a dearth of relaxation-promoting GABA), oxidative stress, drained mitochondrial health, and cellular dysfunction. Again, it’s another downward spiral. Feeding the glial cells means incorporating copious essential fatty acids, especially EPA and DHA, as well as B vitamins, and magnesium. In the cases of those with autism, upper limits on nutrients like B6 may not apply the same way. Nonetheless, Dr. Herbert suggests working with a doctor who can find a therapeutic dose that doesn’t impose unwanted and risky side effects.

Immune Function (Especially Gut Health) Is Key

Remember those glial cells? Most of your glial cells are found in the digestive system rather than the brain. As Dr. Herbert explains, research is just beginning to understand the implications of this for autism disorders. Overall, she explains that gut bacteria has a huge impact on the brain. Abnormal gut bacteria can deplete nutrients and produce unhealthy chemicals Herbert calls “toxic trash.” Research has found, for example that the more p-cresol (a chemical produced by abnormal gut bugs) that was present in subjects’ urine, the more severe their autistic symptoms were.

Dr. Herbert stresses that we don’t know when the abnormal gut profile takes root, but everyone’s gut immune system is established early on. She suggests incorporating fermented and cultured foods, using a probiotic supplement, avoiding over-sanitation, eliminating artificial additives, and limiting carb intake. While some experts poo-poo diet elimination techniques, Dr. Herbert says she’s seen more than enough evidence in research and in her patients to suggest that these elimination diets (e.g. gluten, casein) can make a critical difference. The key is to give it time – some three to six months – to judge real change and to work with a physician who can differentiate between “die off” (e.g. yeast) transitions and other health responses when looking at any coinciding setbacks.

Some Final Primal Words

Our lives – and our children’s lives – are so vastly different today than they were just a couple of generations ago. These differences are embedding themselves faster than we sometimes appreciate. I wonder if it’s just simple coincidence that many new treatments for autism spectrum, ADHD, and other developmental and behavioral disabilities are homing in on maximizing what I’d call the basics of healthy development itself – enhanced nutrient density, increased time outdoors, more exercise and movement, rich play opportunities. To be sure, many of these are often adapted for particular therapeutic purposes like specialized social play therapies, music therapy, or Anat Baniel’s movement methods. Nonetheless, these approaches prioritize the building blocks of physical, cognitive, and socio-emotional development.

It’s true there are plenty of children with autism or ADHD who grew up eating real, organic, even Primal food, who played outside nonstop, and lived with fewer household toxins. Likewise, there are millions of kids walking around without a disability who have been fed a steady diet of fast food, candy, and junk food. As Herbert and others suggest, it’s a complicated, confounding picture we’re dealing with. It can seem random and unjust.

I can’t say I know this from personal experience with special needs in particular, but I’ve seen friends wade their way through the tangle of emotion and services as well as the confusion of expert opinions. (It’s a pattern that also obviously holds in other “expert” based arenas as well like health care.) Just because the bulk of research goes down a certain path doesn’t mean you have to. Often the best, most sensical and personally effective means for bettering one’s health and life are to be found in the margins, the up and coming or as-yet little understood approaches.

Make no mistake. I’m all for the importance of good research. I look for confirmation. I know, however, that effective options don’t always get studied or published with the same frequency as conventional choices. As the folks at Brain Parenting put it, “the ‘good science’ metric is often wielded like a stick against parents or teachers who try new and novel techniques to help kids with unusual brains. Parenting doesn’t just rely on ‘good science.’ It also relies on observation, and derives great power from the narrative.”

The research on whole brain, whole body intervention doesn’t negate the importance of traditional interventions like speech and occupational therapy, social therapies, etc. It doesn’t nullify the call for medications that can actually make a positive difference in the lives of those with autism, ADHD, or other similar conditions. It doesn’t undercut the significance of parental love and acceptance. And, inevitably, it doesn’t offer a simple or universal resolution to the difficulties imposed by autism or other developmental and behavioral disabilities. As Dr. Herbert explains, it’s not about promising a cure but revolutionizing the way we think about and address these developmental and behavioral conditions. The whole brain, whole body approach seeks to harness the basics of biology – cultivating the power of cells, the fitness of whole systems, and the potential of brain plasticity – to foster the healthiest and richest life possible for every individual whether he/she is disabled or not.

Thanks for reading today, everybody. I hope you’ll offer your own thoughts and perspectives. I’ll look forward to reading your feedback.

You want comments? We got comments:

Imagine you’re George Clooney. Take a moment to admire your grooming and wit. Okay, now imagine someone walks up to you and asks, “What’s your name?” You say, “I’m George Clooney.” Or maybe you say, “I’m the Clooninator!” You don’t say “I’m George of George Clooney Sells Movies Blog” and you certainly don’t say, “I’m Clooney Weight Loss Plan”. So while spam is technically meat, it ain’t anywhere near Primal. Please nickname yourself something your friends would call you.

  1. {sigh} This just makes me think more and more that I have some version of Aspie’s. All the sensory… well, my family (and I) have always viewed it as my “hysteria” and “hypersensitivity” … let’s call it sensitivities; my complete and total unwillingness to eat vegetables (yes, my gorge rises, and I have to spit it out) — and dammnit! I’m 56!

    Some reading raised the wistful hope that maybe supplementing with zinc would let me eat veg (nope). Magnesium? Not so far (but I still have hope).

    I cannot express how frustrating it is to wish to eat paleo/primal — and just be unable to overcome my reaction to vegetables (a reaction along the lines of running screaming out of the room). {sigh} I’ve quit grains as much as I can (still have some rice… because an all-meat diet also makes me quail, too).

    I guess I need to go investigate the feeding of autistic kids to see if some techniques might apply to my own ‘disability’ when it comes to eating good foods.

    Elenor wrote on July 12th, 2012
    • GAPS diet gives step-by-step implementations and phases. Perhaps even sipping bone broth could get you part of the way there? It’s a process, but well worth it. Good luck to you.

      momof2groks wrote on July 13th, 2012
  2. I’ve been working with my ADHD/oppositional son for over a year on diet. Problem is, he wants to “fit in” at school and resists even though he feels better on a good diet. For those who don’t have kids with special needs – this is way harder than it looks. You can be the best parent in the world and try to feed your kids the best food. But everyone else in their lives will feed them candy and freezy pops and get mad at YOU for suggesting that your kid shouldn’t eat that. I’ve gone 30 rounds with the school this past year about donut parties, freezy pops, and hot chocolate. Why do other parents and teachers not get this? Don’t feed my kid junk! And while you are at it, don’t feed your kid junk either!

    simpson wrote on July 12th, 2012
    • AMEN. It defies comprehension that my 4 year old is bombarded with the garbage at school even after a celiac diagnosis. Keep fighting the good fight, there is nothing more powerful than the fierceness of a mother’s love. And yeah- it is so easy to make flippant comments about feeding your kids healthier food but until you’ve been treated like a moron by family members who are mad that your kid isn’t allowed to eat candy or found candy wrappers in your childs’ backpack you have no idea how hard it is to take those things all the out of their diet. Sadly if people sneak that stuff to your child, even as little as once a week, the child never quite lose their taste for it. Thus the vicious cycle continues. Anyone whose has a child with these pecial needs that has a supportive family and school: you are blessed indeed!

      Christina208 wrote on July 13th, 2012
    • TRULY. One teacher bought my ASD kid a HFCS soda, from the machine in the teachers’ lounge, never asked parents if this was okay!!! UGH! And there IS a district policy in place, against that. She had the gall to ask us for money for it afterward.

      Linda wrote on July 13th, 2012
      • I dread this actually next year, his first year away from me all day. I already had to request NOT to get a certain teacher, who talked during the open house tour about how she loves to bake and make special treat with her K class…”brownies, stuffing, cookies, jello, lemonade….” My little guy tugged on my arm and said, “Mama, I can’t do any of that, I hope I don’t get this classroom.” I headed into the office with a Dr’s note for the diet, and said I do not want that classroom for my child.
        At this point, my 6 year old (who has been on the diet for 3 years) knows what he can and cannot eat, and knows even to decline things like playing with regular play-doh and getting floride treatments and chewing colored tablets on the day the dentist visited his Safety camp. (I reward him with some berries when he gets home to reinforce his doing the right thing when it comes to avoiding unhealthy foods or dyes.)
        Ironic, isn’t it, that the people who are stuffing their kids with cheetos and M&M’s are treating you like it is child abuse to deny them this garbage? I get that too. You know what, my kids are delighted at a birthday party with a small fruit salad that I bring from home, so if the people around them would stop making such a BFD about “Your poor kids can’t have any ice cream or cake!” they would never think twice about it. It is HARD when everyone around you seems to want to sabotage your progress, or they don’t believe that a treat here and there could do much damage. Maybe not for their kids, but our kids are another story.
        Good luck to the parents trying to do the right thing.

        momof2groks wrote on July 13th, 2012
        • How in the world are they allowed to do this? It is so frustrating! My child’s preschool class has FIVE children out of 15 with allergies and yet each parent would get assigned a snack week- pretty hard to provide snacks for an entire class with various peanut allergies, gluten allergies, and dairy allergies. Halloween, Christmas, Valentine’s always means a backpack FILLED with actual candy. I don’t understand why kids need to be fed garbage in the same facility that is supposed to be building their minds- and with the ever increasing incidence of allergies, and even childhood obesity I find it to be totally irresponsible and negligent to be feeding children this stuff. Ugh.

          Christina wrote on July 13th, 2012
        • one comment:

          homeschool (yes it is a tough decision but what you are all dealing with at school and amongst “normal”peers sounds like more work to me…)

          ravi wrote on July 13th, 2012
        • Ravi, I was homeschooled as a child and only wish I could afford to do the same:) It was a wonderful experience and if you are doing that for your kids, they are truly blessed!

          Christina208 wrote on July 13th, 2012
      • My mother attempted to send a note to my down syndrome sister’s school some time back saying that she didn’t want her drinking cow’s milk because she had heard cutting out grains, dairy, and sugar had helped downs syndrome kids function better- and was told that it was against the law- that by law, she needed to drink the cows milk unless she had an allergy (that would have to be proved with blood tests and a dr. note). Totally despicable.

        Christina208 wrote on July 13th, 2012
        • I’d say she should try and find a doctor who will write a note. (DAN! doctors might be a good place to start?) From what I have read, Down’s does have a lot of cross-over with ASD in the fact that there are methylation issues, depleted glutathione, and a very high rate of gluten intolerance.
          My son’s note says, “X is on a grain-free, dairy-free, corn-free, soy-free, low carbohydrate diet free from all artificial colors and preservatives. This is a medically necessary diet.”
          Yes, to anyone who just thinks the problems that plague this generation is just a result of better diagnosis, how do you explain the kids who have immune systems that are so out of whack, that exposure to peanuts can KILL them? Did you have peanut free schools or classrooms or lunch tables when you were growing up? There weren’t special peanut-free schools so we just didn’t see these kids because they weren’t mainstreamed. Start digging and see for yourself how the 4A’s (ASD, Asthma, Allergies, and ADHD) are interconnected and share the same root causes.

          momof2groks wrote on July 13th, 2012
    • It is hard, my son is the only kid at school with the healthy lunch! He gets lots of praise from the teachers but the kids look at his food like he is nuts for being willing to eat it.

      What helped me was to tell the school they are allergic to certain foods. This worked very well particularly with my special needs daughter! We also tell the children they are allergic/sensitive to certain foods and should not eat them, that has worked well too because now they will ask if a particular food has such and such ingredient in it. This does not solve all the junk issues but it has cut way down on them for sure.

      Mama2SPD wrote on July 13th, 2012
  3. Would suggest everyone watches this lecture by Dr Natasha Campbell-McBride on Gut health and how it effects our health. She has had lots of success treating Autism ADHD etc with her GAPS diet which is basically paleo.

    http://vimeo.com/10507542

    Clippies wrote on July 13th, 2012
  4. I am a moderator on the GAPSHelp Yahoo group and I read stories of autism being healed with a caveman diet all the time. The first stage of GAPS is meat, vegetables, fat, and homemade, fermented foods. It’s amazing what removing grains and other sugars will do.

    Kristina wrote on July 13th, 2012
  5. Thank you for another interesting article and comments! I, too, have a son with Aspergers, and he is a very picky eater and very stubborn. He’ll go hungry rather than eat something that threatens his taste buds and oral sensory issues. As a result, he is very slim, though full of energy and life. He loves sandwiches, hot dogs,crispy/crunchy veggies but hates milk and meat. Good suggestions here in the comments to get your child to eat more nutritiously. Someone suggested getting your child to drink a smoothie with extra veggies and yums in it–I’ll have to try that. And get him tested for gluten and celiac issues.

    Jenn wrote on July 13th, 2012
  6. the Article on Autism is spot on. As a supplement, please check out Stephanie Sereff’s article on Autism. She’s an MIT PHD and is amazing. Article is at http://stephanie-on-health.blogspot.com/2008/11/sunscreen-and-low-fat-diet-recipe-for.html
    and she has many more on similar topics at her home page at MIT located here http://people.csail.mit.edu/seneff/
    Her articles really moved me towards Primal. Hope it helps all.

    Roger wrote on July 13th, 2012
  7. I am glad you addressed this. I have a child with an ASD diagnosis (not classic autism), and I recently changed herto a higher protein diet, adding the “mitochondrial cocktail,” to her regimen, a collection of vitamins and supplements including CoQ-10, carnitine, and creatine. I have not seen an improvement, and do not really expect to, but I will happy if this helps her functioning in even the most subtle ways, and perhaps prevents degeneration. She does have a mutation in one of the respiratory chain enzyme genes, but our local children’s hospital genetic and metabolic dz department said it was not one to worry about, and denied an evaluation, despite her low muscle tone nad cognitive / communication problems. I said to heck with that, did my own research (as I have for my LADA diabetes) and assembled the supplements. Since she is a growing kid, I have seen her make developmental progress, since, and it would be easy to attribute to the supps and protein. I will continue them, make no mistake — but I also know they may not have anything to do with her advances. When you have a kid with a developmental delay, you do anything — and keep doing it.

    Linda wrote on July 13th, 2012
  8. In addition to diet, test for heavy metals using Andrew Cutler’s protocol and test for ammonia. Mercury, usually from a mother with mercury dental fillings, is an extremely common problem with autistics. The urea cycle is often suboptimal too, or simply overwhelmed by pathogens that produce ammonia in their damaged guts. This leads to stressed adrenals, an effect similar to a hangover, and assorted other problems. If symptoms subside after a thorough gut-clearing event, if I may be indelicate, ammonia is very likely a problem. AKG is the primary treatment for ammonia but there are a few other supplements to look into. Healing the gut helps but may prove inadequate.

    Brian wrote on July 13th, 2012
    • Ammonia and mercury were issues with my son. We are due for a second round of testing soon, and I wonder if he has had improvement. I will looking into AKG, thank you.

      momof2groks wrote on July 13th, 2012
      • A couple of links to help you out:
        http://savingsavannah.org/2012/06/19/the-good-and-the-bad-viral-protocol-part-two/
        http://health.groups.yahoo.com/group/frequent-dose-chelation/
        Search for “ammonia” in the FDC group. There’s some relevant info in Cutler’s “Amalgam Illness” book. I’m looking into arginine AKG (A-AKG), lysine and ornithine now. If I understand correctly arginine should be paired with lysine. Ornithine I’m less certain about.

        Gut health is very important since bad gut bugs produce ammonia. Soft drinks wipe out bicarbonate that’s critical in the beginning of the urea cycle for processing ammonia.

        Ammonia is a strong adrenal stimulant too, so if you’re wondering what’s driving adrenal stress that’s a likely culprit.

        Brian wrote on July 14th, 2012
  9. I am beyond thrilled to see this post. I’m yet another person with an autistic family member. My little sister was diagnosed at age 3 and my father was sent home with the advice to make her comfortable for as long as possible and then be prepared to institutionalize her for her own benefit and for that of the family. This was around 2001. Bless him for not taking “no” for an answer and embarking on his own search which connected him to other parents of autistic children and, eventually, led him to the Autism Research Institute and the DAN! Protocol.

    The first year my dad attended the DAN Conference, the bulk of it was “get rid of the gluten and casein. We don’t know why it works, but it seems to really make a difference.” The next year they had an explanation for it as well as further research on other interventions to try and every year they continue to build with more research to back the suggested therapies. I had the pleasure of attending the conference in Dallas two years ago and the people and the research involved are incredible. It KILLS me that so many people, including scientists and health professionals, won’t even read the literature or entertain the thought that a neural disorder can have anything to do with nutrition or the physical environment.

    I’ve watched my little sister grow from a non-verbal three year old to a social pre-teen sitting in the same classroom as her “normal” peers and consistently performing well at, and enjoying, school. My family watched, literally, as the fog lifted for her after the removal of gluten and casein and we’ve watched how her behavior worsens and the stimming/flapping increases after an ice cream cone. You cannot logically argue that this is coincidence. Her responses to diet changes are repeatable and isn’t having a repeatable result one of the litmus tests that we use to judge good research?

    The bottom line for me: What is there to lose? There’s not a list of side effects that comes along with removing gluten and casein. Yes it makes things harder than just grabbing take-out, but isn’t our health and that of our children worth it? And wouldn’t you rather try a less invasive dietary approach before agreeing to antipsychotics or institutionalization? I’m all for appropriately prescribed and managed psychotropic meds and they’re absolutely necessary for some folks, but as a health care provider and as a rational human being, I can’t support jumping straight to an intervention with very serious risks and side effects when there are less risky, but still effective alternatives.

    I really want to see the AMA get on board with a whole-body approach to autism treatment. Well, actually, I want them to get it together for pretty much every other condition as well.

    Laney wrote on July 13th, 2012
    • Laney, Right on! I love our DAN! doctor, and you cannot argue with our results either.
      The last three years have actually made me want to get a holistic nutrition degree, and then follow that with an OT degree. Right now, the people running most traditional therapies seems quite resistant (and even hostile) to Bio-Med and other therapies. Nothing makes me sadder than being in a room full of kids with ASD, munching on their lollipop rewards for doing a good job at therapy. For us, the foundation of a healthy diet allowed for much quicker progress in the traditional therapies. I’d love to open a Therapy practice that uses diet as an integral part of a therapy plan, instead of ignoring that whole piece and giving the kids lollipops or making s’mores as a part of the plan to get them to eat varied textures. *shudder*

      momof2groks wrote on July 13th, 2012
      • *Shudder* indeed. I will never understand the hostility toward the parents who are willing to put it all on the line and spend every moment fighting for their kids. I wish more people understand that it is HARDER to say no all time, harder to not let them have the lollipop or piece of cake and harder to make them play outside when they’d rather be watching TV- but instead you’re somehow being cruel to your child and they just can’t wait to step in and undermine you by trying to give your kid the very food that is poisoning them. I honestly wonder how long the willful blindness will continue before people HAVE to face the facts. What will the autism rates be then? 1 in 3?

        Christina208 wrote on July 13th, 2012
  10. I have been a member of the Trying_Low_Oxalates Yahoo forum for two years, and have read about some amazing improvements people are seeing in their autistic children (or themselves). It is a very supportive group, and has some real science behind it. I’ve also recovered about 90% from my fibromyalgia following a low oxalate diet, and list members have also seen huge improvements in vulvodynia, interstitial cystitis, and other pain syndromes.

    Most of these children are GFCF, and many are soy and sugar free, and a substantial portion also on GAPS. But in so many cases, reducing oxalate load and increasing appropriate supplements has led to very significant improvements beyond these other excellent programs.

    For a quick introduction, check out the following website: lowoxalateinfo.com

    ColoGrassFed wrote on July 13th, 2012
  11. After reading this post I saw a study that claimed autism has no link whatsoever to celiac disease. I don’t believe it, the 2 diseases have striking parallels. So, The researchers concluded that adjusting an autistic child’s diet is “risky and dangerous”! Huh…?

    the happy girlfriend wrote on July 13th, 2012
    • But pumping an infant full of mercury lead arsenic and thimeresol is safe

      Mike wrote on July 13th, 2012
    • It is rather odd and alarming, isn’t it, that celiac (autoimmune) and autism (most likely autoimmune) seem to be on the same statistical increase trajectory? That is, these conditions were almost unheard of 25 years ago, but now the (conservative) rate is 1 in 100. The book Wheat Belly lays a lot of the blame on the toxic, immune reactive plant that wheat has been bred into. If wheat is allergenic/immune reactive, then it’s no surprise that children with autism improve on the GFCF diet because wheat is eschewed.

      CR wrote on July 13th, 2012
      • It is definitely odd and alarming. Kills me how people don’t want to accept such parallels. Most disheartening is that these ‘experts’ can’t just say ‘well, there’s no proof so don’t get your hopes up’. Instead they have to say ‘do not take your child off gluten even if you ‘think’ it makes them sick without a diagnosis’. My son with celiac had lost all of his vocabulary at age 2 when I first had him take the blood test (for ‘wheat allergy’) and was told he was fine. Thank God I took him off gluten anyway. Thank God I didn’t just lie to myself and say his horrendous and often painful symptoms couldn’t be that because of the blood test. A year and a half later he finally got properly diagnosed as celiac. I cannot imagine what my now 4 year old’s life would be like if I had taken that advice. He has a long road to go but at least his worst issues now are language delays and not an utter inability to speak or communicate at all. These people are totally morally reprehensible. I saw something like this on the today show that said giving up grains ‘wasn’t safe’ and that GF was a fad. They are not only ignoring research that could help people, they are ACTIVELY encouraging them to IGNORE their bodies and thus stay sicker. Sick, sick, sick. (Sorry to rant, but it really does upset me like nothing else in this world).

        Christina208 wrote on July 13th, 2012
        • Even commenters on the thread are making the absurd claim that the explosive increase in autism is just due to ‘expansion of the diagnosis’ and ‘better awareness.’ That’s right, we just didn’t notice them before! Talk about denial – out of graduating class of 90, six of my classmates have children with autism – children who were on target developmentally and were verbal and engaged but regressed into non-verbal, still-in-diapers past five, very, very ill children.

          I grew up in the 70s and nobody, I mean nobody in my peer group had autism. Or their siblings. I work in a large urban library and I see many adult homeless and group home residents and not ONE has autism – bipolar disease, addiction, fetal alcohol syndrome, schizophrenia yes, but autism, NO. I guess people deny the epidemic because it’s too painful and horrible to accept the manmade catastrophe that has befallen these children.

          Bless you for refusing to give up until you discovered what was making your precious child so sick. What would have become of him if you had?

          CR wrote on July 13th, 2012
        • I know how you feel. While my son who has autism has been making great progress on the gluten free casein free diet my brother who is of all things a pediatrician will not accept the fact that this diet is helping. I asked him what pediatricians are doing to treat autism and he just has no answers. My sons first pediatrician who was a family friend and my pediatrician when I was young basically told my wife that ” at least there is hope for my daughter”. He had no problem giving my son 5 vaccines at once but when asked how to treat the condition that he may have triggered they just shrug their shoulders At least DAN doctors are willing to try things. I’m sure some of it is crap but if even some of it helps isnt it worth trying. I don’t see the pediatric medical community doing anything accept pushing more vaccines and making money off of them. It’s very upsetting to watch this happen to this country Maybe when 1 in 2 children have autism someone will do something

          Mike friedlander wrote on July 13th, 2012
        • It makes me crazy when people say it is a fad, it is dangerous, or it is not healthy to give up grains. You have nothing to lose and everything to gain by trying it for a few weeks. Most people who do see such great results, they never look back, and then it makes them mad to think about all of the doctors and experts who tried to keep them eating the grains and low-fat diet. AGHHHH!

          momof2groks wrote on July 13th, 2012
  12. Thank you for this very important post, Mark. A very cogent theory of autism, or the epidemic that is most likely being mislabeled autism, is that it is an extremely complex, multifactorial autoimmune/neuroimmune disorder in which the immune system malfunctions and begins shutting off blood flow to key parts of the brain. Brain inflammation/microglial activation also results. Once the immune system goes haywire it opens door to all sorts of viruses and bacterial infections (HHV6, Epstein Barr, Lymes) that further wreak havoc. The result is a devastating disease process that manifests itself in autistic like behaviors.

    The explosive growth in autism is most likely due to the increasingly immune reactive world we are living in – our compromised diet (I’m sure your readers know about Wheat Belly, the highly allergenic, immune stimulating crop wheat has been bred into), our toxic burden, GMOS, AND, perhaps, a vaccine schedule that has quadrupled since 1980, when the epidemic really began to take off. (1 in 10,000 to now as much as 1 in 36 boys in CA. Yet many experts will argue that this is just an expansion of the diagnosis, and then wonder why the public won’t trust them. “Nothing to see here, folks! It’s ALWAYS been this way…Yet people know what they see with their own eyes!)

    I had a graduating class of 90 girls and six of us have children with so called autism. And we’re not talking quirky, socially awkward left brainers who are good at math, but rather very ill children who lost all speech and are still in diapers at 8 years old. Many also have horrible GI and immune issues. These were children who were on track developmentally, who were verbal, loving and engaged and then either crashed or slowly slipped away around 22 months like someone with Alzheimer’s. (Interestingly, many children with ‘autism’ have a family history rife with autoimmune disorders (rheumatoid arthritis, Diabetes 1, Celiac, Crohn’s), which suggests a genetic vulnerability to an immune system malfunction.
    http://pediatrics.aappublications.org/content/124/2/687.full.pdf

    In any case, since autism is most likely autoimmune, any food that is allergenic and causes an immune response (wheat, dairy) should be eschewed. The Primal Diet is an excellent diet for children with autism to follow.

    CR wrote on July 13th, 2012
  13. Okay, I was going to start with the next paragraph, but I realized that I need to preface this comment with this: I don’t hate you, I don’t hate parents of children with autism, I don’t hate parents of adults with autism and I don’t hate autistics. I also don’t think you ignored useful information (that was available to you) or came to a *biased* conclusion, per se. I hope you’ll read this through.

    I’m really, really sorry to see you talking about autism. Most people have no CLUE what they’re talking about on this topic, you included. When they shut up and treat it like any other topic they have no clue about, I don’t get annoyed.

    But they don’t. Everybody’s got an opinion (and a platitude and a tragic narrative and a sarcastically-delivered piece of fallacious logic and loads and loads of pity and fear and grief) and everybody feels like THEY know what’s going on, and clearly no one else does. Part of that might have to do with the fact that autism research is in a similar state to nutrition research.

    Let me repeat that: the state of autism research and public understanding is similar to public understanding of and bias of research into nutrition, health and diseases of civilization like diabetes.

    Now, I hope, you see why I started off a little miffed at you having anything to say on this topic.

    So let me tear down a few misconceptions here:

    1. “Nobody knows anything about autism! It’s a total mystery!” …No. First of all, arguments about the cause(s) of autism are, first and foremost, political. Political? How can autism be political when you’ve never heard the Democrats or the Republicans argue about it? If anyone responds to this saying they’re really, really interested, I will explain. So anyway, second, there’s a lot of research, lots of it biased, but it’s not something where nobody has any idea at all. But third, not knowing why it happens isn’t the same thing as not knowing anything about it.

    2. “Peer-reviewed published studies are the place to find information about autism, right? That’s going straight to the experts!” No, it’s not. Look, I ADMIRE you for scouring the actual scientific literature on topics like nutrition and fitness, but in this case, that is not where to find the actual knowledge. The actual knowledge is in adult autistics and parents of autistics. Researchers don’t know what they’re talking about.

    3. “Seeing the bad things associated with autism improving means the person became less autistic.” This really SOUNDS reasonable, doesn’t it? It sounds like a tautology, right? But it isn’t. “Autistic” is a kind of brain; some of what are called symptoms of autism are ways that autistic people react to stress. Further, just like good nutrition and fitness and not being mistreated allow neurologically normal people to function and learn better and do things they didn’t necessarily think were possible, they allow autistics to do that, too. Think about a child who’s already stressed out (the hypersensitivities mean they will pretty much invariably be). Now think about that child WITH the normal health issues from eating the SAD diet. Now think about that very same child, changing NOTHING except… take away the SAD diet and accompanying issues. Whether autistic or not, the child will be easier to deal with and happier.

    4. I know you don’t know this, and I know you don’t mean it this way, and I know I’m going to get replied to by fifty million parents of kids with autism saying I’m wrong. The fifty million parents aren’t the ones whose brains are metaphorically depicted in your picture for this post. I don’t ask that you take it down (it’s a warning to others that you don’t know what you’re talking about! :D), but I do ask that you remember for next time (I hope there isn’t a next time, but just in case…) that the puzzle piece design is offensive to many people.

    You know a lot about a lot of things. Please continue to focus your blogging efforts on the topics that you’re, frankly, an expert on. I won’t leave your blog over this; you’re a wonderful resource. But I hope you’ll go back to making posts that are full of information and well-researched ideas for promoting health.

    Quiet Reader wrote on July 13th, 2012
    • Why shouldn’t Mark talk/post about autism? He prefaced his post by saying that he has no personal experience. He offered a book that delves into the kinds of diets/treatments that are allowing people on the spectrum some relief from their symptoms. He explains that he has gotten letters from many parents explaining how changing the diet has made their life better. If you believe people should listen to the parents about what works, and Mark says that sometimes the answers are not found in journals but on the margins, it seems like you agree with him.

      As far as the puzzle piece goes, that kind of gives me an idea of where you are coming from. I see puzzle piece bumper stickers at therapy on cars of moms who are only seeking conventional treatment. I have seen puzzle piece jewelry on moms of kids who were developing normally and then regressed into autism and accompanying health disasters, and these moms have sought out Bio-Medical treatment for their children to help them regain their health. The only people I am aware of who HATE the puzzle piece are people who believe that autism is just how certain brains are, and we should just accept it and move on. (Neuro-Diversity movement.)

      Personally, I don’t have an autistic child, but a child who had all kinds of underlying health concerns that made him demonstrate autistic behaviors. I don’t really like the puzzle, per se, but more because it is a symbol used by organizations like Autism Speaks which does nothing to actually help autistic people, nor people with underlying health issues that result in autistic behaviors. As far as my son goes, looking at his underlying health issues as a puzzle that needs to be pieced together is highly appropriate. I don’t find it offensive, but I am not going to slap one on my car.

      I think someone on here before mentioned that in many cases, a complex series of systemic health concerns is actually being misdiagnosed as Autism in some people, and I agree with that, because if you fix the roots and the autistic behaviors disappear, then it wasn’t just how the brain was and would always be.

      And if a child is suffering with severe GI issues, we should not be so complacent and just say, “Oh, that’s just part of autism.” Autistic kids deserve treatment for their underlying medical issues that are causing them pain, same as NT kids. And if treating the gut or treating the viruses helps them neurologically, all the better.

      My guess is that you are an adult with ASD (Aspie), and you hate the idea of all these parents out there trying to fix autism, because you don’t feel like you are broken. Great. I am happy for you. I don’t think you are broken either.

      But my son practically had a neon sign pointing to his belly showing me where he *WAS* broken, and it was on me to fix it. I don’t really know how it worked, but I do know that after getting certain things out of his diet he: stopped toe walking, stopped rolling on the carpet all the time, stopped pressing himself belly first into furniture and flopping himself awkwardly and hard over our ottoman backwards, stopped dropping to the ground out of nowhere like his bones were made of jelly, stopped stuttering, stopped grinding his teeth and pinching me all day long, stopped head-butting me in the face every time I had him on my lap to read a story or put his shoes on.

      What his DAN! doctor suspect from his test results is that he has an underlying mitochondrial issue, which can explain almost all of his issues:

      http://www.epidemicanswers.org/epidemic/biological-dysfunction/mitochondrial-dysfunction/

      What I am trying to say is that I do not feel you are wrong for your feelings of this article. Of course you aren’t broken, of course you find the puzzle metaphor insulting, of course you bristle at the idea of fixing autism.

      But, as the saying goes, if you know one autistic person, you know ONE autistic person. Your situation is not the same as the one I was facing with my son. For me, I think MORE articles like this need to be put out there, because people need to realize that they have choices about how they want to tackle these things.

      momof2groks wrote on July 14th, 2012
    • I’m sorry, but who gives you the right to claim truth and say there is none in this post? I’m a mother of a child with autism. I’ve read Dr. Herbert’s book (among many others). I’ve read through research in many special needs areas, and I observe and work with my child daily. I also used to work with young adults on the spectrum in a learning services capacity. Perhaps you are on the spectrum. Even still, you should understand that you are one of millions who experience varying symptoms in varying degrees and in varying ways. Your response is offensive in its self-righteousness approach and condescending attitude.

      Jen wrote on July 14th, 2012
      • You’re right, I shouldn’t say there’s nothing correct here at all. Mark is actually right that “behavior problems” can be caused/exacerbated by poor nutrition, etc.

        In fact, now that I think about it again, my annoyance was uncalled for. I’m used to some really offensive things starting the way Mark’s post did, and I went into it with a chip on my shoulder ready to think I was going to read something that I’d be completely justified in tearing to shreds if I wanted to risk getting flamed for it. So I didn’t go into that response in a good mood. :/ Honestly, if I hadn’t come into it expecting something much worse, I might’ve let it slide as something that suggests some interesting ideas, says some things that are true but not well-known and has a few misconceptions.

        And I confess I worry because Mark has posted on here about autism before in passing, and I thought then that he ought not to get into that (I stand by that statement; truth on this topic is to be found far more often in people like– well, just as one example, you– than in whatever doctors and research Mark has found).

        Thank you for informing me that, with regard to courtesy, my reply crossed a line. I’m sorry; condescension and self-righteousness were uncalled-for.

        In fact, the more I consider your points, the more I think you may be right, and I wrong. Maybe instead of telling Mark to shut up and pointed out things he doesn’t know about the can of worms he’s opening, I should have added my knowledge to his and everyone else’s on this thread.

        I also realize that part of my very visceral reaction to this post may have come from knowing it would bring more “tragedy” comments. While I’m completely right to think people need to stop feeling like “yes, I think autism is horrible!” is a useful thing to add to any discussion that about autism that isn’t specifically a debate about cure (since it’s a majority position and it can be safely assumed that in most contexts besides autism-centric communities, almost everyone agrees), that’s not really Mark’s problem. I also confess that I’m a little surprised that Mark did NOT trigger at least one or two really vocal anti-cure, autism-pride activists to start a flame war here, especially because statements like “[t]here’s general agreement now it’s not solely a matter of improved diagnosis, and few anymore argue that it’s purely a genetic phenomenon” are… well, that’s false. There ISN’T general agreement, but I guess this isn’t the part of the internet where you find the vocal “you didn’t notice before and this epidemic stuff is all made up” people.

        Let me make the reply I SHOULD have made:

        Mark is correct that overall physical health affects mental well-being and behavior. It’s true that illness and poor diet should be considered as possible causes of “bad behavior”, as well as many other kinds of stressors (such as sensory overload from types of clothing, lighting, speech or background noise). Because some research does show that a much larger minority than in the general population have the kind of gut issues that absolutely require a GFCF diet, that’s definitely something to experiment with; at the same time, there are people for whom it didn’t help at all. Those for whom it does work, I believe, tend to be people for whom it turns out to have been only exacerbating underlying issues (but for them, going GFCF can mean the difference between nonverbal with frequent meltdowns and communicative and happy, though still autistic; that’s probably where the mistaken “GFCF cures autism” idea came from).

        However, what isn’t specifically a problem with this post, but rather with the discourse in general, is that some important ideas have been left out.

        1. Biomed is worth trying. However, the most important thing with an autistic child is to remember that the autistic child is– a child! He or she needs time to play and learn. He or she may need to be able to interact with parents or peers in a manner appropriate to his or her age AND neurology. (This will not necessarily be the same as how parents and neurologically normal children interact.) Finally, he or she shouldn’t be forced into anything so painful that it will result in PTSD, which is an occasional risk with some types of treatment, particularly because autistic brains may process certain types of stimuli as painful which don’t hurt normal people.

        2. If you really want to know about autism– especially if you’re a parent of an autistic child– the best place to find answers is not in the scientific literature. The absolute BEST resource would be an autistic adult whose presentation is close to what you’re interested in. Second best would be a parent of an autistic child similar to what you’re interested in, or an autistic adult who presents somewhat differently. Third best would be a parent of an autistic who presents differently. Next comes the full text of studies if you’re able to understand them, then professionals who work with autistics all the time, THEN professionals who don’t (like regular doctors). The abstracts of and any reporting on studies are likely to be so biased and inaccurate as to be worthless. (And the general population still thinks autistics ain’t got no feelin’s, they’re made o’ Indian rubber!)

        3. Finally, if you have an autistic in your life, ESPECIALLY if it’s your child, it’s important to consider said autistic’s self-worth and mental health. It can be easy to get caught up in trying to “fight” autism, out of a normal and healthy and good desire to help your child, and end up accidentally giving said child (who may not yet be able to fully understand protestations to the contrary, and may not be able to do the work of taking your perspective at all, but let alone if it isn’t spelled out clearly!) the impression that what you actually are trying to get rid of is that child. It’s not accurate– but it’s an EASY impression to give by accident, and if the child can’t talk, you may not know it’s even happened. When this happens, it’s very damaging, sometimes as much so as any of the child’s symptoms.

        So, finally, Jen, thank you for taking me to task on that. I appreciate it.

        Quiet Reader wrote on July 14th, 2012
        • I disagree that the best place to look is an autistic adult. Our kids are facing a very different set of environmental triggers and circumstances than adults with ASD. As one previous poster put it, we are dealing with an “epidemic that is most likely being mislabeled autism, is that it is an extremely complex, multifactorial autoimmune/neuroimmune disorder.” I do not think that what is labelled autism in 20+ year olds is the same as what our young kids are facing when they get a diagnosis on the spectrum. Our kids are also very physically sick, which may or may not be the case for people in the older co-hort. (I don’t know, I did read Temple Grandin’s book in my book club, and she discussed all of her GI issues, so maybe there is a component of that connection for some?)

          You could look at my son and see his bloated belly from a mile away and talking to other moms and reading lots of blogs and forums and lots of trial and error helped me figure out exactly what kind of diet he needed. (GFCF would not have worked for him to get his belly better, though it did get him sleeping). With a few easy tests, the underlying co-morbid conditions he was facing were identified and treated, eliminating physical discomfort and lessening the neurological symptoms. Don’t you think that my son was grateful to be able to sleep without pain for the first time in his life? The days of him moaning and flopping around in his crib and having night-terrors were over when I switched his diet. In fact, on the Mother’s Day card he made for me at preschool, one of the questions was what do you love most about your mommy, and he said, “She works very hard to help my tummy feel better.” Gosh, it really seems like I am somehow psychologically damaging him by trying to fix his co-morbid conditions, aren’t I?

          When we talk about his diet or supplements, we discuss it in terms of getting help for his belly. Lucky for him, we all follow the same diet as a family, and his Daddy has a lot of the same digestive issues, so he knows this is just how our family eats. I have asked him how he will talk to his friends at school if they ask him about his lunch, he said “I will say that my belly does not digest well, and I have to Eat Like a Dinosaur.”

          I think in all of you navel gazing, you are not giving parents like me enough credit that we know enough to tell the difference between an approach that will help, and an approach that could hurt. The very first thing I ask myself before beginning anything is “Could it hurt him in some way?” I also talk to him about what we are going to try, why, and make sure he is okay with trying it.

          Changing his diet was a no brainer, and we all embraced the change as a family. I would never fix a special meal for him and then hork down a bunch of pizza in front of him. Our whole family has gotten healthier and I tell him all the time that learning how he needed to eat really helped his Daddy with many long-standing health issues.

          Giving him a few supplements was also a no brainer. B-12 shots, probiotics, ADP and glutathione breathing treatments all made sense for him according to his test results. He does them all with no problem.

          The Sensory Learning Program took a bit more of a leap of faith, but we were rewarded with a child with better motor control, stabilized energy levels, and really swift progress in his PT/OT. (He was rewarded with a giant Lego set!) And yet when I was researching the program, I read on smug ND websites that it is all a bunch of woo and quackery that is trying to take advantage of stupid parents who want to cure autism. That is so inaccurate and condescending. It was nice for my son to finally be able to run without tripping, to ride a bike without tiring-out, to climb at the park without being scared that his arms can’t hold himself up, to make it through his half day at school without staring like a zombie and hunching over his seat because he was so exhausted from having such low muscle tone.

          He also does a work-out program and Tai-Kwo-Do with his daddy who is very into fitness, and we are getting some Brain Gym activities going as well. We work on getting his belly better and getting his muscles stronger. We are helping him, not hurting him.

          I think you need to take a step back and let parents make whatever decisions they find appropriate for their family without somehow making it about you. No one is implying that high-functioning independent autistic adults are some tragedy that needs to be fixed. It is a tragedy to have a happy, healthy, smiling talking baby suddenly regress physically and emotionally and have diarrhea for months and stop interacting with the world. That did NOT happen to my son, thank God, but it has happened to people in my circle, and damn right that is a tragedy. And when those kids get better (physically and emotionally) damn right it is worth the fight and worth sharing and discussing with other parents. It didn’t matter how much love I gave to my son, holding his hand all through the night and trying to comfort him when he cried. When he was in physical pain, he was not happy. In my experience, parents are not trying to “fix” autism as much as they are trying to stop their child’s physical pain.

          momof2groks wrote on July 15th, 2012
        • momof2groks, good for you working so hard to help your son’s digestive issues. I don’t know what the Sensory Learning Program is, but if that also worked for you, I’m glad to hear it. If it’s some kind of OT thing, I’m surprised that anyone would discount how useful those can be. (Speaking of medicalish therapies, if he has auditory issues, you might eventually look into auditory integration training. I’ve heard that some methods are quack-ish, but the one I had worked. Just make sure the tape doesn’t accidentally get stuck. Happened to me, was NOT fun. Oh, and the results are largely temporary, but the timescale for wearing off is years and personally, I’m all grown up now and there’s still a significant amount of residual benefit.)

          I would love to hear more about why you feel that autistic adults and autistic children have totally different conditions. I’d never considered that possibility; to be honest, I’m still not seeing it. As for co-morbids in adult autistics, I’ve heard of low lung volume, central pain, asthma, epilepsy, anxiety disorders (which, IMO, are probably largely physical illnesses that are being misdiagnosed), achromatopsia, hypothyroidism, catatonia and I can’t think of anything else off the top of my head. (Well, besides PTSD, but that doesn’t really count.) On the other hand, I can also think of adult autistics who don’t recount tales of childhood (PHYSICAL) woe as bad as your son’s, so it’s possible.

          Also– I’m the sort that usually gets overlooked by people like you, or passed off as “oh, CLEARLY this one doesn’t REALLY have anything wrong”, but at four, your son seems to have better communication with you than I had with my parents at more than twice that age. If you’re aware that discomfort is behind so much of what’s going on with your son, if you’re ALREADY aware of that, your son is lucky to have you. That’s not what happened to me and it’s not what I usually hear about happening to others. As a rough guideline, I’d suggest that the older the autistic, the more likely they were to have been misunderstood as having behavior problems because of their discomfort (whether illness or sensory-processing-related); as such, a lot of autistics are skeptical (and rightly so) when they hear that a parent knows what’s best for their autistic kid. Luckily, you seem to be more with it than some of us had to deal with. Like, a LOT more with it. I’m grateful for that.

          I wish you– and your son– luck in navigating this world.

          Quiet Reader wrote on July 15th, 2012
        • Thank you, Quiet Reader, for taking the time to respond to the rebuttal to your original comment. I have to admit that I was taken aback by the aggressiveness of your first comment but at the same time couldn’t quite figure out what you were really trying to get at. Now I think I understand more.
          As a parent of a severely autistic child (and with Down Syndrome too, no less!) I know what it means to walk that fine line between acceptance and ‘cure.’ As an American, I also understand that we are raised with the attitude that anything, with a little bit of hard work and technology thrown in, can be overcome, goddammit! But as a mother who has married an Italian and has lived most of my adult life in Europe, I also have seen the other side, the love and acceptance that almost all parents have for their children, disabled or not. Not to say that Americans don’t love and accept their children too, but hey, there’s a hell of a lot of pressure to just bust our way out of our present situation, no matter what! That pressure can be overwhelming…
          When I came across the paleo/gaps diet possibility, I saw it as a way to try something that could help my child in the most natural, holistic way possible. It couldn’t hurt, right? What is there to lose? In the same way, I always resisted, despite some of the excellent reviews, to therapies like ABA, which seemed to ‘train’ the child to behave properly. When I heard one parent say ‘hell, you get could get an elephant to do anything with this method,’ I really couldn’t tell you if that was a positive comment or not! Your comment about pushing autistic children too hard, to the point of PTSD, really hit home for me.
          I agree that we must be careful in getting caught up trying to fight autism rather than learning to just love and accept our child for who they are. I adore my son, but if I can help him to improve rather than continue on that slippery slope downward, which is what I was experiencing, then that is all I ask. To see your child suffer, him waking up at 3am every night, in the dark, laughing at the top of his lungs at God knows what, is not a happy picture. If I can help him, WITHOUT MEDICATION, to sleep through the night, then I will do that diet no matter what.
          I understand your concern that parents will try only to fight autism, in the desperate hope of curing their child, but I think all we ask is to go uphill, rather than downhill. The love and acceptance is already there.

          tracyinbarcelona wrote on July 15th, 2012
      • I have little patience with anyone in the autism acceptance community (which is full of SELF-DIAGNOSED adults, by the way, and parents who have given in to resignation) who go after parents who are desperately trying to recover their children.

        If all we are is our brains then I hope all of the ‘autism acceptance’ crowd stick to their philosophical guns when they or their loved ones start to descend into Alzheimer’s/Parkinsons dementia, or the myriad other diseases (AIDS dementia, Pick’s, tertiary syphillis, Lyme’s) that can cause radical cognitive changes.

        My once verbal, connected, joyful son’s descent into ‘autism’ was no less terrifying than watching a loved one slide into dementia. He wasn’t born this way. His autistic condition is no more ‘who he is’ than my friend’s grandmother’s late stage Alzheimer’s was her. Almost every parent I have spoken to who has a child with this new wave of autism describes the same awful process.

        In fact, I would like us to change the name of autism to “infantile on-set Alzheimer’s”. It looks like the same microglial activation occurs, so that wouldn’t be too far off. Google “microglial activiation Johns Hopkins and autism” to see the research John Hopkins is conducting.

        CRMS wrote on July 15th, 2012
        • Quiet Reader-
          I think in replies, you reap what you sow, and your first reply annoyed the holy heck out of me, but your most recent one is heading in the direction of mutual understanding. Thanks for that.

          Before I had kids of my own, I was a teacher. My first year teaching, I had a student who had Asperger’s. I not only had him in my class, but in a small after-school club I coached. The first few weeks of school he did not look up much, but after getting his bearings and getting to know me in a small group setting, he’d look up at me in class and make a silly face when no one else was looking. This kid was delightful beyond measure, and I remember wishing I had a roomful of kids just like him.

          Then his mom sent our team a letter that he was having panic attacks every night, certain that he was failing all of his classes, and spending hours and hours on his homework making sure everything was perfect. He would not use an eraser. If he made a mistake, he crumpled up and threw it away and started over. I started to think about how when I graded his papers, his handwriting looked like it had been printed off a printer, it was so perfect. After reading her letter, instead of thinking of it as really fantastic, I pictured him bawling over these pages to get things that precise. It made me feel very helpless, because he was amazing at school, but really so stressed at home. She asked us to please print him an up-to-date grade sheet at the end of the day, or at least a few times a week, so he would know he was doing well. Some of the teachers thought this was ridiculous, but I just thought, “Here’s this fantastic kid, who works so hard to hold it together at school, and then falls apart at home.” I did what I could for him.

          I came across that letter this summer when I was sorting through my teaching things. Even more than when I first read it, it made me feel like someone was squeezing my chest. My son is 6 now and doing quite well, but for a while, he was that smart, precocious, verbal child who was great outside the home and then fell apart at home.

          People in my own family still do not believe me that there was ever anything “wrong” with him. It doesn’t matter that I have evals from OT’s and PT’s listing all of his global motor delays, nor that he qualified under the autism umbrella for free early intervention through our preschool after assessment by professionals. People who only see him for a few hours in party settings (the ideal environment for my little sensory seeker BTW!) felt that they could pass judgement both on him and on me. So yeah, I am a bit prickly about being judged on these things, because no one is an expert on my child other than me. I quit my career to take care of him. I do get being annoyed if someone who does not know you (me) makes an assumption that there is not anything really “wrong” with you nor has there ever been. That is BS and if I implied that I am sorry. (Wrong is not the best word to use, I am not really sure how else to put it.) I don’t know what you have been through, but it certainly seems like you have come out the other side well, which is what I hope for my child. (He is fine and will be fine, I already know that, but I do think I possible have a bit of PTSD myself from his first three years when no one would help me and I didn’t know how to help him. That is an awful feeling for a mom, one I would not wish on my worst enemy.)

          As far as different co-morbids between adults and children on the spectrum, I think there are different co-morbids with everyone, and you can’t generalize really because if you know one person with autism, you know one person with autism. I don’t think there is one path to autism, but many ways to get there, so what works for one may not work for another. I guess I just feel like this generation of kids has had more immune system assaults (did you see my previous comment about the exploding peanut allergies? Interconnected) so perhaps what works for kids 6 and under is going to be different.

          As for the SLP, it is a combined auditory, photo and vestibular therapy. Apparently, using the tri-modal therapy makes them work better than any one alone. And I don’t really get why people are so negative about to, but they are. Even at his therapy office, they tried to talk me out of doing it. Here’s the article, anyhow.

          http://www.wired.com/medtech/health/news/2007/05/brain_hack

          For us, the diet and the SLP were the two best thing we have done for him, both of which are mocked and made fun of on ND websites. Now, we are looking into HBOT, which is supposed to be great for mito. Don’t know if we will do it or not, but we will make that decision as a family, and I am done looking at or reading ND website, because they are hostile. I feel like I owe it to him to give him the best treatment option we can afford so he will not have to struggle in school.

          My best to you.

          momof2groks wrote on July 16th, 2012
        • momof22groks, yeah, I probably should’ve been more polite to begin with. I’m sorry, but I’m also glad we ended up understanding each other. You’re not alone, by the way; you know this already if you’re as familiar with the autism community as you sound, but there are definitely others out there experiencing similar things. SLP sounds weird, but then, a lot of things that help autistics sound weird. Thank you very much for sharing that information. Knowing that it really does work, I’ll respond properly if someone ever asks me about it.

          CRMS, I’m sorry for your loss. That said, I believe you mischaracterize “autism acceptance” parents when you claim that they have given in to resignation. Perhaps the parents you’ve met have been that way; those I’ve met haven’t, and try very hard to help their children learn, grow and not hurt.

          Quiet Reader wrote on July 17th, 2012
  14. My 8 year old son was diagnosed with a complex tic disorder last year and i believe well on his way to a Tourette syndrome diagnosis in a years time.The doctor said it was genetic and that changing his diet would not help but couldn’t hurt. I said “bugger you,it’s my son and I am not sitting by and letting him get worst”. First we removed junk food mainly all preservatives, additives and colours especially and the severe head nodding got less but still there and the vocal tics was a constant . He moved from one or two types of tics every week it seems. I heard parents on forums had great success when they removed gluten and casein from their kids diet. I also came across paleo around that time too and put the whole family on the paleo lifestyle. The change in my son has been miraculous, he still tics slightly if he gets very hot , when he is excited or nervous but the constant every day tics that he had no control over are gone.

    Betty wrote on July 14th, 2012
  15. People are starting to realize why being primal is good for everyone:

    http://9gag.com/gag/4759491

    primal_guy wrote on July 14th, 2012
  16. Fellow autism parent friends of ours, my wife, and I personally have spoken with Dr. Herbert several times over the years. Some of us know her very well (I do not). But, if you get her in a closed room, she will tell you with confidence the primary environmental assault triggering the genetically prone, is vaccines. She will only tell you in private company and if she already knows you know. She will not say it in a public forum; she will not admit it to people who don’t/ refuse to know, nor will she write about it. If she does, her work will not be published. As we say, she doesn’t want to get “Wakefielded” (the fate of Dr. Andrew Wakefield, who was politically assassinated by large special interests – oh and btw, his partner, Dr. Walker-Smith was exonerated for any wrong doing in the same study that gave Wakefield such infamy). I know that a lot of you will raise holy heck over this post because you believe vaccines are the holy grail of modern western medicine (and I don’t necessarily disagree with you), but for our kids, the kids who have been vaccine injured, they are literally the most destructive substances that could be legally injected into our children. And Dr. Herbert is not alone. We travel all over the country so we can see doctors who actually “get it”. Our pediatric neurologist gets it. Our pediatric gastroenterologist gets it. Our pediatric geneticist even gets it. They just don’t talk about it publicly because they want to stay in practice and be able to accept insurance. The message is clear from the global medical industrial complex: DO NOT MESS WITH VACCINES or you will be railroaded – pure and simple. What i don’t get is this: Vaccines are pharmaceutical drugs. every pharmaceutical drug lists side effects, many of which can be very serious and some can even kill. Everyone seems comfortable with this fact, even if you may get an erection lasting more than 3 hours. ;) Why do we somehow think that when it comes to vaccines – none of those risks apply or that these risks are so infinitesimal that they could never happen to our kids? Yes, they study for safety for individual vaccines (which could be a whole other post) but they have never once tested in totality the safety of the 49 doses of 14 vaccines by the time our kids are 6 years old. Without even getting into the unholy alliance between HHS and large pharmaceutical special interests, (not the least of which is the latters total protection from lawsuits pertaining to vaccine injury – again a topic for a whole other post), it just seems like common sense that if we alter a child’s immune system 49 times by the time their little body reaches 6 years old, there will be autoimmune consequences at some point. Asthma, ADHD, allergies, childhood rheumatoid arthritis, and yes autism – all autoimmune disorders. According to the CDC, 43% of American children suffer from these disorders/diseases today. Probably better diagnosis too? :) If you add childhood obesity, that number is over 50%. The wealthiest country in the history of mankind and our kids have less than a 1 in 2 chance of being healthy?! Go ahead and start the “baby killer” rants now. I think I’ve heard them all at this point, but always look forward to some new ones.

    Mark, loved the book and the blog!

    Autism Dad wrote on July 14th, 2012
    • Well said. Vaccines are pure evil. My own brother a pediatrician gave my dad Paul Offit’s book about how vaccines have no role in autism. Is this especially hurtful my son is a vaccine injured child. The reality is Dr Offit makes a shit load of money off of his vaccines therefore nothing will ever change unless one of his kids is vaccine injured then maybe he will change his tune. He states that a child can receive 10,000 vaccines and be fine. I’d like to see him get 10,000 vaccines and see how fine he is

      Mike wrote on July 14th, 2012
    • I wonder why it is that when this topic comes up, the accute illnesses that we vaccinate against matter so much more than the chronic and debilitating disorders that are now being linked to vaccines? Why does a baby who is killed or injured by a vaccine matter less than a baby who is killed or injured by an infectious disease?

      Oh, and I have heard the same thing about many high profile doctors- for example, I have heard that neither Dr. Oz nor Dr. Sears vaccinates their own children, though they tow the CDC/AAP party line in public. That is curious, but not really if you follow all the dirty behind the scenes politics about what happens to people who step out of line.

      I don’t know how many times someone has told me, “There has only been one doctor who has ever linked vaccines to autism, and he was a fraud. It has been disproven time and time again, and you need to stop reading mommy blogs and start basing your information on science.”

      And yet, if You read GAPS, Dr. Natasha Campbell McBride discusses the link. If you reading “Healing the 4 A’s” Dr. Kenneth Bock discusses the link. If you read anything by Dr. Jerry Kartzinell, he discusses a link. And if you talk to or see a DAN! doctor or even a more holistic minded doctor, they will tell you there is a link. The first person who mentioned a link to me was a licensed and practicing MD. The DAN! doctor we see says that my son’s genetic vulnerabilities coupled with HOW he was vaccinated are the root cause of his issues. Our GP said (after looking at my notebook of test results) that he would not vaccinate anyone else in our family, and that I need to watch the hospital staff like a hawk and tell them that my son had a vaccine reaction and that we are opting out of all vaccines when I have my new baby. He says his kids got vaccines, but his grandchildren are all unvaccinated…because there are too many unknowns and too many new ones on the schedule.

      So it is funny how the media and people in the bloggosphere portray this issue as one of paranoid parents who are ignorant of science verses doctors and scientist, when we are going to Dr. appointments and specialists and are being told behind closed doors, “STOP vaccinating!” Or “Vaccines played a part in your child’s medical issues.” This is not an unusual story that I hear from my Bio-med group, from people all over the country. Doctors do get it, but they only say it behind closed doors.

      But the tide is turning, I think, and more and more people are getting that this is indeed a man-made epidemic. It is getting harder to deny something that is right in front of all of us.

      If anyone is interested in news and activism about environmental autism, check out The Canary Party, a group which advocated for environmentally and medically injured people.

      momof2groks wrote on July 14th, 2012
    • If what you say of Dr. Herbert is true, then the way she approaches the subject in The Autism Revolution is very troubling. While she talks about problems with environmental toxins and an inability to detoxify normally as being and underlying condition in ASD, she also says how important the national vaccine program is. In the chapter I just finished, a mom who wants to prevent ASD in her 3rd child after having 2 on the spectrum mentions that she opted out of the flu shot during her pregnancy, and on the next page Dr. Herbert advocates moms getting the flu shot before getting pregnant. The flu shot, which as Mark has written about has poor efficacy and still contains mercury, is a bad idea for anyone, much less a person who already has two children on the spectrum. I actually find her whole approach in the book of skirting the issue of vaccines very disturbing, especially if she actually believes they are a key factor. She is really toeing the CDC part line in this book.

      momof2groks wrote on August 10th, 2012
  17. Fantastic article and thank you for all replies which many of are in keeping with my thoughts re Vaccination. As for diet there are fabulous results with Forever Living Products of Peaches Aloe Vera, Omega 3 and Forever Kids vitamins.
    http://www.honeybee.myforever.biz/
    This quality product of Aloe Vera gives results and detoxes the gut allowing it to absorb the nutrients and has been known to improve symptoms.

    Anne Aitken wrote on July 14th, 2012
  18. Thank you for this post! I’m a former elementary school teacher with a dual credential in both elementary and special education. I’ve seen my fair share of kids with special needs. I witnessed 2 kids whose behaviors were completely transformed by a GFCF diet and am now 100% convinced that nutrition plays a key role in disorders such as autism and ADHD. I left the education field at the end of last school year to pursue my passion. I’m now a student at the Institute for Integrative Nutrition and intend to blend my teaching experience with my holistic nutrition education. My plan is to start my own holistic health coaching service where I coach families of kids and teens with special needs on diet and nutrition changes. It’s disappointing that many people in education (and the medical field) don’t see a link between nutrition and developmental disorders. I want to change that and prove there is a link. Thank you for inspiring me with this post.

    Stephanie wrote on July 14th, 2012
    • Great plan, Stephanie. Is it an online program you are looking at? If so, i would love the name or the link. This is my field of interest as well. I also used to be a teacher.

      momof2groks wrote on July 14th, 2012
  19. GcMAF was discovered last year to have a great level of success in treating the symptoms of autism. As this is an immune system regulator, the fact that Dr Bradstreet (USA) and Dr Antonucci (Italy) are both reporting a success rate of over 85% would indicate that there is a viral/immune system breakdown problem. Perhaps there are viruses living in the blood/brain barrier which are associated with the gut bacteria? The research is young, but the results are outstanding. Research continues; Dr Bradstreet gives much more detail on his website together with letters from parents, or find out more about the 46 peer reviewed scientific papers behind GcMAF at http://www.gcmaf.eu. The feedback from the parents indicates that there are a lot of variables to be taken into account with the diet, but there is a lot of benefit from working through the options.

    Lesley Banks wrote on July 16th, 2012
  20. “The irony is, of course, that these children’s diets are often more likely to be deficient because of sometimes extreme sensory aversions to the taste, smell, texture, or even appearance of certain foods.”

    This is exactly the problem I have with my child, who has been diagnosed with both ADHD (when she was 6) and Autism Spectrum Disorder (when she was 8). She is now 9 years old and only eats a handful of foods – all of which are highly processed. Peanut butter sandwiches, boxed mac and cheese, chicken nuggets, sugary yogurt, and applesauce are what she survives on. I would love to put her into occupational therapy to try to improve her eating habits, but my insurance will not cover it because it’s “not medically necessary.” She also has a malformed palate, which is a physiological issue that can also cause picky eating. I eat very clean and know how horrible processed foods are, yet I am forced to feed my daughter this garbage or watch her starve. It is so unbelievably sad and frustrating and I have no idea how I can change it. If anyone has any suggestions, please email me at becky.slaughter@gmail.com

    Becky wrote on July 18th, 2012
  21. Hey, guys! I know this is an older post, but I’d just like to point out the case made by my genetics teacher recently on this subject: He was saying how it wasn’t vaccines (i know this post doesn’t delve into that, but he was going on a rant about how much he hated Jenny McCarthy for saying it was caused by vaccines) but the recent spike in the 90’s was a result of a change in diagnosing the disease. Apparently, its a broader diagnosis and more kids are getting flagged for being autistic. He joked and said his wife would probably be on a low range because she’s so intelligent and has weird social habits lol

    Johnny wrote on December 10th, 2012

Leave a Reply

If you'd like to add an avatar to all of your comments click here!

© 2014 Mark's Daily Apple