Everybody loves to give diet suggestions to people with autism (or their parents). The range of regimens that has been suggested to me is a veritable rainbow, including:
The GFCF Diet - gluten-free, casein free
The Elimination Diet – for allergies
The “Forks over Knives” Diet – plant-based
The GAPS (gut and psychology syndrome) Diet – whole foods, no grains, lots of meat
The Paleo Diet – eat like our ancestors…lots of meat
The Anti-Inflammation Diet – no gluten, no nightshades, no sugar
Also, The Body Ecology Diet, The Specific Carbohydrates Diet (SCD), The McDougall Diet…even The Jenny McCarthy Diet…
I appreciate the good intentions behind these suggestions and I am grateful. It is not the recommendations that bother me; it is, quite simply, not knowing who’s correct! Surfing the internet is no help. Some claims around diet reek of pseudoscience, some are blatantly commercial, most seem genuine and sincere. Each contradictory mandate has scientific backup and heartfelt endorsements.
Barring any clear consensus, we try to live by Michael Pollan’s simple edict:
Not too much.
Rather like…The Mediterranean Diet.
We eat mostly whole foods, follow a vegetarian lifestyle and yet do not eschew the occasional pint of Ben and Jerry’s (in the People’s Republic of Vermont that might well be unpatriotic!). This works for us, for the most part.
Nonetheless, we are gearing up for a full-on trial of a combined GFCF/anti-inflammation diet. I am taking a few months to read about these, and combine them. I want to figure out what, if any, supplementation we will utilize; so far we are looking at probiotics and vegan DHA and Omega 3’s. I also need time to process what the diets will entail and to get ready for what looks like major sacrifices in an already-tweaked diet scenario. Our spectrum comes complete with a variety of neurological and emotional differences and, as vegetarians, we already don’t eat the way most people do. I am reluctant to add yet another layer of difference!
Oh, and I want to make this shift in such a way that the kids don’t notice too much, or feel deprived, and yet know enough to graciously turn down food that’s not included in this “adventure.”* I want to truly make it an “adventure,” tastewise, but a lot of the gluten-free products are ultra-refined and some have a sandy texture, while the vegan products are often made of isolated or hydrolyzed (huh?) soy protein. I think I can do this for the three to four months I hear it takes to see a difference; facing a longer span feels daunting.
As well, I wonder if these dietary changes will “work” – and what that would even mean: I don’t think there is anything about G that needs to be fixed! So why start a “treatment?” Will I become one of “those” people? You know, the ones who drive restaurant workers crazy? For nothing? Is this a super bougie bougie project or profoundly worthwhile?
In addition to the conflicting reports on diets and autism, I am confused by findings that genetics may play a much larger role in autism than previously surmised. The suggestion that diet can “cure” autism was potentially belied by a recent New York Times front-page story about research into genetic links with autism (http://www.nytimes.com/2012/04/05/health/research/scientists-link-rare-gene-mutations-to-heightened-risk-of-autism.html). With advances in genetic testing and analysis, the prevalence of genetic links with autism is expected to increase exponentially from this juncture.
Still, environmental and other factors (such as diet) can strongly influence the real-world expression of our genetic blueprints. The study of epigenetics may ultimately show that dietary changes correlate strongly with autism – or not.
I applaud all families and individuals who make positive changes in diet that lead to improved health on any level. And I know from personal experience that some of the sensitivities that tend to accompany those on the autism spectrum and those close to it (such as those with sensory processing differences) can be mitigated by changes in internal (eating, drinking, tasting) or external (seeing, hearing, smelling, feeling) exposure.
G and I do have some severe chemical and sensory sensitivities. G gags and gets reflux from many foods. He is highly sensitive to certain sounds, types of touch and tastes. For me, it is more about smells and visuals. I will get an aura then an excruciating vomiting migraine after walking down a cleaning-product aisle or smelling certain scented lotions. There are times when I need to walk with my eyes mostly closed, under certain lighting conditions or when there is too much going on visually. G sometimes makes tubes out of his fingers to look through, so as to limit visual input to a manageable and intriguing subsection.
We both have bumpy skin on our arms and legs, which, I have recently learned from “The Autism Revolution,” may be a sign of Essential Fatty Acid deficiency. On the other hand, some sources claim these bumps are due to food or environmental allergies.
It is, literally, a lot to take in.
If I could wave a magic food item and change something, what would that something be? Would I make us not always tell the truth and be upset when others, by our lights, don’t? NO! Would I make us suddenly able to cold-bloodedly navigate what we both view as brutal social scenes? NO! Would I make us see the world just like neurotypical people do? NO! (Everybody sees the world a little differently anyway!)
I would sooner change the rest of the world than some of these qualia. Nevertheless, would it be nice for both G and I to be more flexible, more interpersonally perceptive, less obsessive? Perhaps. But what if we went too far in the other direction and were then overly flexible, social-climbing dilettantes? I’ve always admired Aristotle’s Doctrine of the Mean, which posits a lack and an excess for every virtue** -- and counsels us to find the middle ground. A whole system approach to balance might enhance weak skills (lacks) while retaining strong ones (those that are “just right”). But just how might diet per se do that, exactly?
Here are some relevant lacks and excesses:
Virtue: focus: Would it be easier if G could get from his bed to his clothes in the morning without being distracted by every interesting item en route (Lego? Floor board? Cat hair? Sure!)? Maybe. But what if one day, during that process, he discovered the secret to nuclear fusion or the alchemy of waste to water?
Virtue: moderation: What if I got “cured” and stopped making my lists? I love my lists! I got my lists from my sensory-challenged Mama! Or what if G stopped loving pokemon and heavy metal and started liking Jack Johnson and weapons and cars?
Virtue: wisdom: As a dear friend said, “You can’t and don’t want to change who you are, you just want to do whatever you can to remove the bullshi+ that keeps your true essences from shining.” In Yoga philosophy, that bullshi+ is the only true ignorance, and is called Avidya (literally, not-knowing). Of course I want G to be comfortable in the world, his best and whole self. When we are overwhelmed by sensory processing differences and their repercussions, we miss a lot. There are things we do not, then, know. But who is to say there are not things we know that others do not?
Virtues: acceptance, empathy: The fundamental question seems to be: should we medicate our differences? Cleaning off the gook that hides our true Selves from ourselves a la Yoga philosophy is one thing (and many sensitivities that cause overload and impede processing may be “gook” in this model), but trying to squeeze everyone into one neuro-psychological paradigm is another. Who defines this difference? Do we each decide for ourselves?
I might be able to get behind improvements in some of our chemical and sensory sensitivities if our emotional and mental sensitivities remained undiminished. In general, though, I fall pretty squarely in the pro-neurodiversity camp. Then again, my son is (and I am) relatively high-functioning.
That being said, what else might diet affect? In other words, why bother?
Well, there is the diarrhea.
We haven’t got the steadiest stomachs in our Full Spectrum household. Let me amend that “we:” Pardner and Z are tanks, able to eat anything with complete physical equanimity; G and I are muy delicato.
In a word, we have diarrhea. You think you have diarrhea? No. We have more diarrhea. Gas, too. We keep a box and toilet paper (“the kit”) in our car. On car trips, we may stop more than once an hour. Before going anywhere by any conveyance we assess the necessity for a preventative poo.
An example from last week: We were one hour into an ostensible six-hour drive to my twentieth Bryn Mawr reunion when G announced that he had pooped his pants. He kept asking, “Are you mad at me?” and I kept telling him that I wasn’t. I felt terrible for him – and unenthusiastic about what we would need to do to deal. As soon as I could, I pulled into a gas station. G ran in, yelling, “Where’s the bathroom?” to no one in particular, with Z and I trailing him. In the bathroom, he discovered with great rejoicing that he had been wrong. An hour later, we weren’t so lucky. Then we hit traffic around New York City and were bumper to bumper for four hours with no way to pull over. Between traffic, bathroom stops and incidents, that drive took almost ten hours. I vowed never to go anywhere again.
And I wonder: Will G be traumatized? What could I have done differently? How can I avoid these scenarios in future?
One possible explanation for G’s and my stomachs is our swimming in the Rio Tuira in La Palma in the Darien jungle in Panama. This cool and refreshing river is rife with alien (to us) parasites that we have brought home with us upon occasion. Might I suggest that maybe after three days in the heat of the Darien jungle in Panama you too would stop caring that the outhouses all empty into the river and dive in and allow your child to do the same, along with all the other kids?
Another possible explanation is lactose/casein and/or gluten intolerance, which seem anecdotally common in people with autism. Or perhaps our digestive systems are impacted by some or all of the various lacks (beneficial flora, good gut bugs, DHA, enzymes) or excesses (bad gut bugs, toxic heavy metals) that people on the spectrum tend to present in their guts. We need to reach that elusive Digestive System Mean – and the path is unclear.
Whatever the case may be, our Full Spectrum household is always just a Yo-kids Squeezer away from the scatological. I am hoping that switching to Soy-gurt will help.
Whole body approaches are designed to improve connections between and within our various systems and that is one reason diet appeals to me. I guess if I could wave a magic food item and change something it might be how completely befuddled I feel about what we should eat!
I may have to take a “my bad” on this one:
1. “I don’t know…”
I don’t know what the right diet is for us. Should we nix dairy? Cut out wheat? All gluten? Gluten and dairy seem to be the biggest offenders, stomach-wise. Or, as some suggest, should we steer clear of All grains? No soy, too? Then we just eat nuts and dried beans for protein? Well aren’t beans pretty…gassy?
2. “I messed up…”
I pooped my pants…or you did -- because I couldn’t get you to a bathroom fast enough.
I grumped when I got confused and felt bad about feeding you a meal that I worked hard to purchase and prepare. My choices seemed good by one standard but not by another.
3. “I’m sorry.”
A while ago, G and I experienced an extended weak-stomach period. I asked my Laotong (“old same” – a term for lifelong best friend in Mandarin) Lili – a bastion of practicality as well as magic -- “How many times a year is it normal to poo in your pants?”
“None,” she informed me, much to my surprise.
I had thought one or two seemed reasonable, under the best of circumstances. She clearly and unilaterally disagreed.
However, Lili recently returned from a stomach-challenging trip to Ethiopia and I am hopeful that she will change her conservative stance on reasonable-poops-in-pants per year.
But in case she doesn’t, we are still looking into diet.
Full Spectrum Mama
* I casually mentioned our new “diet” to G and he asked me not to use that word “because it makes me feel fat.” I explained the various alternate meanings of the word, but we decided to refer to our dietary changes as an “adventure” instead.
** For example:
cowardice – courage – foolhardiness
impatience – patience – inertia
gluttony -- temperance – insensibility