Time to elaborate again on a comment response I made recently.
In response to my post about Martin’s golden week, I received this comment from a reader:
We are not on a biomed path as our son’s extremely restrictive food choices preclude this. Also his autism is visible throughout our family tree and heritable traits probably can’t be eliminated entirely by an altered diet. However our son’s behaviour varies considerably depending on who is looking after him and how secure he feels. Not all sides are helpful . . . while low-sal may well be helping don’t ignore the effect of his environment out of hand. There’s a lovely book called Uniquely Human about this sort of thing [that] might be worth a look. Thanks for writing—we are on a path much more to do with movement than food due to our family’s ASD presentation but we have the same burden of analysis and choices as you seem to! Bonne Chance
This was my response:
Thanks for reading! A few thoughts on your comment: I agree that environment is also relevant, and we pay a great deal of attention to environment and behavioral assists. But seldom (in my experience, never) do they yield an immediate effect; a substitute aide does not make a great day, or week—though a new aide certainly can change the course of the year. In terms of the biomed path, I don’t know of any child whose autism was corrected entirely by an altered diet. Diet is only the foundation of the healing path. Moving along that path requires supplementation, methylation assistance, detoxification, etc., specific to the child.
Genetic and inheritable traits also play a great role in my son’s condition. I would be naïve to think otherwise. Both my brothers have immune disorders, and psychological/psychiatric conditions (which I now would call health conditions) are endemic in my family. That does not mean my son’s autism cannot be lessened, if not resolved, through biomed. Epigenetics, neuroplasticity, and all that I know about the science of healing suggest otherwise.
In terms of your son having extremely restrictive food choices—well, that brings me to a paradox. In my experience working with biomed families, children who restrict their food choices are usually the biggest beneficiaries of biomed, once it gets going. The food aversions, which often have underlying digestive causes, tend to disappear once the irritants are removed from the diet. I would encourage you to give it a try!
But even if it’s not right for your family, that’s okay too. It sounds like you are doing a lot for your son in any event, and I hope it will get him where he needs to be. Whatever approach we take, we are all in this together.
These are the three points I’d like to discuss further:
- Picky eating is a reason to pursue biomed and dietary changes, not a reason to discount them.
- Genetics don’t always get to write a child’s future, at least not every aspect of the future.
- If picky eating or genetics are keeping you from pursuing biomed and/or dietary changes, that’s okay.
As to point 1—“There is no way I could do a gluten-free or dairy-free diet, because my son will eat only cheese tortellini, breaded chicken nuggets, and pretzels.” “I tried a special diet once, and she didn’t eat for three days. Literally. Finally I gave in because she would pass out otherwise.” I hear these statements frequently when other special-needs parents find out that we do biomed. I also hear their corollary, the failure-to-thrive argument: “My son is so skinny and small for his age, even though he eats a ton. I have to give him milkshakes constantly just to keep his weight up.”
Years ago, I attended a presentation by Dr. Arthur Krigsman. (Yes, I know Dr. Krigsman is controversial. At this point, I find that many doctors doing research and providing non-pharmaceutical medical treatment to children with autism are called quacks. I’ve had to get past that and start making my own decisions.) Although biomed parents (as far as I could tell) filled much of the audience, Dr. Krigsman was speaking as part of a panel discussion aimed primarily at physicians, and therefore much of what he said went over my head. I think I understood him to say that many children on the spectrum exhibit lesions and inflammation throughout the digestive tract, including in the esophagus and stomach. Dr. Krigsman calls this condition “autistic enterocolitis.” These lesions, like so much of what affects our children, originate from unbalanced immune response to normal gastrointestinal action. Picky eating, or food aversions, might be a sign of pain from such digestive troubles: Kids express their hurt by avoiding the foods that exacerbate that hurt. In such a scenario, a kid who is not eating, or is severely restricting his own diet, needs biomed. Like, really, really needs biomed, or some form of medical intervention to begin healing the digestive tract.
Speaking from my own experience, when Martin was young, before we started biomed, he “postured”: He would bend forward with his stomach tight and his fists clenched at his side. He also slept with “elevator butt.” (I stole that term from one of my law school classmates, who used to scratch the base of my cat’s tail, then yell “elevator butt!” when the kitty straightened only her back legs.) Martin frequently slept with his face smashed into the mattress and his butt in the air, as if to relieve pressure on his gut. Both the posturing and the elevator butt ceased within a few months of dietary changes. Whether he actually had enterocolitis, or just some lesser form of irritation, I don’t know. But he was in pain, and a restricted diet relieved that pain.
During Dr. Krigsman’s presentation, I couldn’t help but think of “Jonas,” a boy I know with undiagnosed behavioral issues that resemble seizure-related oppositional defiant disorder. At the time, Jonas would eat nothing but processed yogurt drinks or green shakes. I searched for a way to raise the issue of entrocolitis with his mother, a single woman constantly overwhelmed with managing Jonas’s behaviors and shuttling him to various therapies, including eating therapy. I never found the right moment, or non-threatening way, to bring it up. I consider that a shortcoming.
I don’t believe that “autistic enterocolitis” is the only reason a kid on the spectrum might avoid foods. Martin’s friend Bobby, who is on a GFCFSF diet, limits himself even further because of taste and texture issues. He will not eat soft or chewy foods. Martin himself would be happy to repeat his two or three favorite foods every meal. I consider that a form of perseverative behavior. Again, these are issues best addressed (in my world view) through biomedical intervention, to resolve what’s causing the aversions or perseveration—although I don’t discount the complimentary role of behavioral therapy, such as RDI.
As to the child who allegedly needs milkshakes to put on weight, if a boy eats and eats but cannot gain weight or grow taller, plainly he has a health problem that is not being addressed. His body is not processing the food’s nutrition adequately, which means he probably isn’t getting the foods that his body can process. Which brings me to dietary changes . . . .
As to point 2—I have heard from parents who say they don’t have any reason to bother with biomed because genetic mutations are to blame for their child’s autism. I get that. I really do. Once you discover what havoc genes can wreck, it can feel almost pointless to try altering the course. Even without the genetic component, it can feel almost pointless. I’ve been at this six years, and we aren’t “there” yet, wherever the heck “there” is. But consider two factors. First, genetics are often a predisposition, not a path certain. Genetics might set the stage, but environmental factors often raise the curtain. You know my favorite environmental villains: processed foods, glyphosate, pesticides, C-sections, antibiotics, vaccines (gulp! I said it again), pollution. Carrying the silly set-the-stage analogy further—if environmental factors raise the curtain, then altering the environmental factors can change lower it again. Even if, for example, a vaccine activates an MTHFR mutation, interventions to restore the immune system can calm the mutation.
As I wrote in response to the blog comment above, I recognize the role Martin’s genetics played in his development of autism. Without going into too much detail (even though FindingMyKid is written anonymously, I feel icky about compromising privacy), my family has genetic gifts—for example, we are “book smart” and breeze through standardized exams, and we are not prone to obesity—and shortcomings. Both my brothers have immune disorders. The elder suffers from a wide range of food and environmental allergies, plus eczema and chronic bronchitis. The younger has environmental allergies. Long before I produced Martin, I myself fell victim to depression, a disease also prevalent in my husband’s family. There’s addiction on both sides of the family tree. So when it comes to immune and related disorders, genetics were not in Martin’s favor. Genetic testing has confirmed the existence of mutations that make him susceptible to autism.
As I understand the history, decades ago we might have been advised against vaccinating Martin at all, based on immune disorder in the immediate family. Let’s add that Martin’s vaccinations followed Pitocin, loss of heart rate during labor, an unplanned C-section, antibiotics in the NICU, and plenty of immune insults I don’t need to repeat again.
The way that I look at it, Martin’s genetic predisposition to immune disorder made him vulnerable to the effects of environmental factors, and now makes our path to recovery more arduous. But it is no reason to abandon him to (perceived) fate.
Then there’s the matter of epigenetics. According to this helpful webpage, epigenetics is “the study of potentially heritable changes in gene expression (active versus inactive genes) that does not involve changes to the underlying DNA sequence—a change in phenotype without a change in genotype—which in turn affects how cells read the genes.” That means that environmental circumstances can cause genes to be silenced or expressed over time. We can influence which genes express themselves, and how. I’d like to seize that power, to whatever extent I manage.
As to point 3—I’ve said this from time to time, and it bears repeating: You don’t need to approach autism biomedically to be my friend. Doesn’t that sound ridiculous? Because this is a blog about biomedical recovery from autism, and because I unabashedly favor biomed, I worry that I must come off as an intolerant person. Since FindingMyKid is written anonymously, I have to ask you to take my word for this: My blog personality and my live personality are different. By now, a large percentage of my acquaintance comprises families affected by autism. Half of those families, I estimate, are pursuing biomedical recovery. The others are not. It’s like having friends who don’t love the New York Rangers, or even hockey in general. I prattle about the Rangers, they listen kindly, and then we find connection in whatever petty topics non-hockey people enjoy. When it comes to friends who have children on the spectrum but don’t pursue biomed, I answer questions (when asked) about what we are up to, I ask what they are up to, and we find connection in the stuff we both know, like sleepless nights, IEP meetings, adaptive sports.
I had the advantage of implementing dietary changes when Martin was just two years old, when he was more malleable. Maybe you don’t want to change your child’s diet because he’s picky, or underweight, or you’re skeptical about biomed. Or maybe dietary changes are too much to manage with a large family, or small budget, or unsupportive co-parent. Maybe knowing your child’s genetic make-up has convinced you that biomed interventions would be fruitless. Maybe you are making satisfactory progress with behavioral therapies. That is totally fine.
Judgment does not become us.
Thanks so much again for sharing all these valuable information in your son’s journey to recovery. I would like to add that there might also be two other groups of families. Those not doing biomed because they do not kmow it even is an even an option… and another group that would be interested but unfortunately can’t afford it 😦
I hope you have a good week!
Hi, just wanted to share my experience with going GFCF. My son was 4.5 around the time we started biomed, the doctor suggested we try GFCF even though he showed no allergy to either gluten or dairy. At the time his diet consisted primarily of toast (wheat bread), milk, cereal, 1-2 fruits and packaged wheat based snacks. He showed no signs of stomach distress to me. So I was VERY hesitant to start given his severely restricted diet. But at that point I was willing to just try (for 30 days) anything that might help him, his language, his socialization, his sensory issues, etc. Well, we went really slow, swapping out one gluten or diary food at a time with a GFCF food, that itself took a few weeks and lots of meltdowns. And then once 100% GFCF we aimed to stay GFCF for 30 days. At 30 days we didn’t see any changes but contrary to what I expected, he was starting to finally try some new foods (probably b/c he was hungry) and they were healthier foods. For that reason alone we continued. And then about 3 months in, the MOST AMAZING THING HAPPENED. He slept though the night for the FIRST TIME EVER. We didn’t make a connection but it started happening more consistently. We had not really started any other biomed yet b/c the diet itself was a lot, so I was able to figure out that the all night sleeping was likely from going GFCF (they say it can take up to 3 mo to fully get gluten out of your system). Did it make his other issues better…no. But the fact that he started sleeping through the night really changed our lives, because I could not handle the lack of sleep. In retrospect, I realize even though he didn’t have outward gut symptoms, he must have had some sort of distress from gluten that prevented him from sleeping. I also realized in retrospect he used to do quite a bit of posturing (leaning his stomach over the sofa, or lying down across my lap) which at that time I thought was him just acting silly. Just wanted to share my story b/c I was so nervous to start and the results were not what I originally hoped for, but it was unexpectedly beneficial and SO worth it. Do I hope to be able to introduce gluten and dairy again one day…yes! But for now its really not as hard as when we first started 🙂
We started seeing changes 1 week after the diet (more attention, less tantrums). Even his preschool teachers noticed a change in behaviour… Then 4 months later we tried giving him again milk to see if we would notice a change. We only gave him mac and cheese a few nights and we saw a significant regression in his behaviour in terms of anxiety. He started crying about every little thing! He would start talking about the same topic for ever!! We stop the mac and cheese and it took almost 5 weeeks for him to be himself again. Not sure why since milk is supposed to get out of the system much faster than gluten….
Hi there, I recently pulled together a lot of new research on autism and the conclusions I drew from it had a lot of biomed-related implications. If you have a moment, would you like to look over it and give your input? http://petticoatgovernment.blogspot.com/2017/03/its-time-to-end-autism-epidemic-part-1.html
Hi! I took a look! Very science-intense, and I don’t science well, so I might not be the best commentator. One question I would ask would be what your perspective is: From what angle are you approaching the autism issue? I wasn’t able to find an “About” page on your blog, or any biographical information other than “independent researcher.” I would love to know how you became connected to the issue.
Autism (of the Asperger type) runs in my family. I’m thus very interested in recent advances in understanding the etiology and epidemiology of autism.
From a recovery perspective, or prevention? I looked at some of the earlier posts, such as the SIDS/vaccine connection.
Prevention, mostly. Based on how early (as early as six months old) babies show brain differences that can be used to determine who will be diagnosed as autistic later, there appears to be some sort of brain structure mis-development issue involved in autism. As we know from traumatic brain injuries, once brain damage has occurred, recovery is very slow if at all.
That said, the brain continues to change throughout life–although never again at the rate of early childhood–so it’s never too late to promote optimal brain development and function through effective nutritional support of the two enyzmatic pathways that convert homocysteine to methionine. So there is some hope for amelioration and improvement of autism, not only prevention, in my hypothesis.
Interesting. For sure, neuroplasticity as a field has been emerging. That being said, I think there are many cases in which the issue is not brain “misdevelopment” but constant misfires caused by a gut-related stimulus, such as excess propionic acid. (I recall some work on this from, I think, Western Ontario.) For example, in the case of three-type repetitive and antisocial behavior, simply reducing the excess propionic acid can abate the behavior and return the brain to typical function. That would come solely from the gut/immune approach. But then every case is different.
Cool! That’s a new avenue for me to look at. B12 and propionic acid are interrelated in animal development in ways that are still being figured out. http://europepmc.org/articles/PMC4169190