NOT A DISEASE

Dear Persons,

As a family of vegetarians, we’re always on the lookout for veg-friendly places to eat when we go on the road. We recently ended up at a gluten-free establishment in the Midwest. Pretty good food! But I won’t mention the name because I did a bit of stealth activism there and I don’t want to make any assumptions about the owner or staff or clientele… 

You could get your own water and bus your dishes etc. toward the back of the restaurant, as well as use the bathroom. And there was also a help-yourself bookshelf full of stuff to read back there. I am always down for a good read, so I took a look. 

Well, the books consisted almost entirely of books about autism. But not just any books. 

“Cure Autism With This,”  “Cure Autism With That,” “Get Rid of Autism With The ___ Diet”—you get the idea.   

I felt ambushed—and horrified. I’ve spent all my parenting years trying to get my kids to love themselves as they are. Sure, I’ve read my share of books about the various nuances of our lives, such as adoption, autism, racism, neurodiversity, learning differences, behavioral differences, trauma, etc. 

And hey, yay healing! We all have stuff to heal. 

Heal away! If, in fact, it’s something that needs to be and can be healed. 

But I’ve always operated in a context of acceptance and diverse perspectives. This felt like a full-on, unilateral assault on being autistic—however well-meaning. 

I quietly went back to my table, took out my mini travel notebook and began to write. Then I went back to those shelves and placed a note in each book: “Autism is a neurology not a disease.” 

And on the long drive home from our trip, I thought about the ways our culture pathologizes so many things that might better be treated as normal and healthy aspects of the human condition. 

Being shy? A serious condition. Same-sex love and desire: a psychological disease? Until shockingly recently, the majority of people, including some scientists and doctors, thought so. Cellulite: abnormal but “curable” (hah!).  Are you little bit weird? That’s weird. Maybe kind of…spectrum-y? Better treat it. 

We even treat getting older like a disease. In fact, I’m embarrassed to admit (even to myself) how much of my internal dialog consists of self-criticism over my age spots or crepey skin. How ashamed I feel on a very gut level about aging, despite being a feminist and never, ever ageist with others. 

Um…HUH? What’s the alternative? 

When will we wake up to the full range of beauty?

Thanks and love,

Full Spectrum Mama

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Diet II – A Poem

We were driving home from Grandmother and Grandfather’s house in one of those monsoon-like storms that seem to be getting less uncommon when G informed me that he had to go, “really this time.” Through the downpour, I could barely make out that the next exit claimed to have a gas station; even the exit itself was barely discernable. Somehow we found our way to the first – closed – gas station then turned around to try to find the alleged gas station in the other direction. When we couldn’t find that one, we pulled into a likely-looking lot, surrounded by promising woods and a bit secluded. A police car pulled in after us. I explained to G that getting out of the car in the pouring rain and heading for the woods wouldn’t be appropriate at that particular moment. As I drove my courageous, whimpering son back onto the highway at a snail’s pace, the following poem popped into my head, almost in its entirety:

Villanelle -- Mad Diarrhea

(with apologies to Plath*)

I ate some food, therefore my insides churned

I bade my time, held what I held too long

(I thought that I could fart – but I was wrong)

The probiotics go sliding in with happy song

And also I ingested some sweets, and that was wrong

I ate some food, therefore my insides churned

I dreamed I ate some gluten and then cheeses round

And in the roadside woods “released” both upon the ground

(I thought that I could fart – but I was wrong)

Fermented food topples from my fridge, fibers abound

Exit possible allergens and yet…not diarrhea

I ate some food, therefore my insides churned

I fancied certain diets for our health and to live long

But I grow hungry and I want some bread

(I thought that I could fart – but I was wrong)

I should have stopped at the gas station instead

At least when you go there they’ve got tp

I ate some food, therefore my insides churned

(I thought that I could fart – but I was wrong)

Alllllrighty then…I promise, no diarrhea posts for at least a month.

Love,

Full Spectrum Mama

* This was one of my favorite poems back in the day:

Villanelle - Mad Girl's Love Song

            By Sylvia Plath

I shut my eyes and all the world drops dead;

I lift my lids and all is born again.

(I think I made you up inside my head.)

The stars go waltzing out in blue and red,

And arbitrary blackness gallops in:

I shut my eyes and all the world drops dead.

I dreamed that you bewitched me into bed

And sung me moon-struck, kissed me quite insane.

(I think I made you up inside my head.)

God topples from the sky, hell's fires fade:

Exit seraphim and Satan's men:

I shut my eyes and all the world drops dead.

I fancied you'd return the way you said,

But I grow old and I forget your name.

(I think I made you up inside my head.)

I should have loved a thunderbird instead;

At least when spring comes they roar back again.

I shut my eyes and all the world drops dead.

(I think I made you up inside my head.)

A Petite Follow-Up Spectrum

Ah, summer: that special time when school is out and those of us who are primary caregivers to young children and who either cannot afford to send them to camp all summer or choose not to (or both) find ourselves faced with long days full of endless possibilities of a nonetheless limited sort. The luxury of choosing to be at home with the children during the summer is not one I have during the school year, and its result for now is a piquant combination of gratitude and exhaustion.

The other morning, Pardner was about to leave the house for a fourteen-hour day that would start at the farmers’ market and end with restaurant cleanup. He asked me what my plans for the day were.

I pictured the day ahead of us – a minefield of possible tantrums and stomach upsets for starters, the dull hours of the “I have nothing to do” chorus, the sweet and cherished snuggles, unexpected giggles and opportunities (responsibilities) to create memories of a carefree, wonderful childhood.

“Well, we’ll probably head to the farmers’ market later and we do have some parties to go to...” I ventured.

“Must be nice,” he chuckled.

“Well, if you must know, I might like to do some writing for my much-neglected blog or tackle my course prep or practice yoga or take a nice long run or even sit in the hammock and read a book while eating bonbons today but those things are not among my options,” I retorted, somewhat defensively…

At said farmers’ market I ran into a girlfriend who was there with her “surprise” child – conceived while she was on birth control in her early forties and her two daughters were in their early tweens and her life had begun to free up. I told her about the above exchange and she laughed heartily, resignedly, only slightly bitterly…

Some school-less days, we spend the whole day looking forward to that treasured half hour after the kids are in bed, that bit of time we have to ourselves before we pass out. In summertime, official bedtimes stretch out -- for us, 7 and 8pm become 9 and 10 and later.

And then sometimes, as soon as they are in bed, we miss them! Right?

That said, here’s what I currently am able to offer, given my summery circumstances: a petite follow-up spectrum to selected past posts:


“Tommy” (from “Would you rather…I”)
I found out that I was right: Tommy’s elderly mother did pass away and he did have to move. However, he didn’t have to go too far: he was taken in by his Aunt, who lives closer to the center of our small town. He has brothers who are very devoted to him in the neighborhood to boot! He now strolls happily with his walking stick around the town square, which has been called one of the most lovely in New England.

Figure I: The Empty House up the street, which was Tommy’s home. It is no longer quite so sad to see.

Tripping/Boundaries (Toilets)/Diet/Diarrhea

We have been gluten and casein free for over a month.



Those of us with weak stomachs still have ‘em – G’s is about the same and mine is noticeably worse. Migraines? Worse. Red mask-like skin? Worse. Reflux?  Worse.

Compensatory eating has also become a factor, insofar as we resent not eating certain foods and those substitute items we do eat are generally awful (so naturally we need to eat more of them).


I understand, though, that this process can take at least three months, so we are sticking with it for now. As for the fake-gluten and fake-dairy items- avast ye terrible products (with a few notable exceptions, such as GLOW cookies). I wager it’s time to focus entirely on whole foods, not wheat/dairy replacements.  I also wager we ultimately will end up moving toward a diet much lower in wheat and dairy, much as we did with soy after Mothering magazine published a damning article about soy in 2004 (and we realized we were eating 6-8 servings a day of soy!).*

It being summer, we have ventured a few perhaps ill-advised jaunts to visit the ocean and family. Restaurants are pretty much out of the question since the only vegetarian item ever available for kids seems to be macaroni and cheese. Mac and cheese seems to hold great desirability and nostalgia for G in particular: “Remember when we used to eat maccy?” he recently asked with a tear, subsequently admitting that our “adventure” with this GFCF diet has been “really, really hard.” I wondered aloud if Z felt the same, and was met with a sheepish, sad nod. That kind of suffering seems hard to justify without any surety around whether a GFCF diet is a solution for us; still, we will go the three-plus months needed for a clear indication.

I used to feel sorry for servers who have to deal with “picky” people at their tables. Now my feelings are more mixed, knowing, as I do, how hard it is for families with possible intolerances who are trying to have a rare treat: a nice, non-depressing meal out with their kids.

If, for instance, after close perusal we find that the only vegetarian, gluten free, casein free item on a menu is a frittata with potato crust and then are told, “Oh no, we don’t have that today, we only have the bacon-cheddar quiche,” are we, Full spectrum Mama, justified in going into a fugue state?

Also, we are coping with G’s anxiety around driving anywhere further away than 20 minutes. I don’t want car travel to become a phobia for him, so we have a policy now of stopping as often as he even suspects he might need to go. Two hour trips can turn quickly to four, but then again he only needed to stop twice en route to Cleveland (ten hours). Go figure. I cannot decipher if there is any correlation with any particular types of the limited foods we are still eating.

The other day I was reading The Autism Revolution (not entirely uncritically) during my lunch and I found out that several factors in G’s life -- including birth by C-section, being gestated by a mother with an autoimmune disorder and antibiotic use during the first month of his life (in the NICU) -- may be affiliated with compromised immunity, increased inflammation and allergies, and, finally, autism.

A few minutes later I checked my email and my beloved cousin, Loon, had sent me a link to “Tending the Body’s Microbial Garden,” by Carl Zimmer
(http://www.nytimes.com/2012/06/19/science/studies-of-human-microbiome-yield-new-insights.html?_r=1&emc=eta1), which basically makes very similar points. For instance, Zimmer describes how vaginal chemistry changes during pregnancy so that when babies pass through the birth canal they are coated with and ingest Lactobacillus johnsonii, thereby promoting a healthy immune system through the skin and facilitating digestion. Babies born by C-section do not receive these benefits. While we may take some steps to improve the health and population of gut bugs, baseline gut health is set to some degree during the first month of life.

I resolved to learn more about which foods and supplements might be at least somewhat helpful, and to at least try to reset our baselines! Zimmer’s article, however, questions the efficacy of currently available probiotics and discusses the emerging field of fecal transplants as an increasingly accepted procedure in the medical field.

So I was telling Pardner about all this reading…and he began to look increasingly uncomfortable. As it began to dawn on me that he apparently suspected I might be contemplating something rather “out there,” I decided to take this very concept – which, actually, up to that moment, had not occurred to me -- and roll with it:

Figure II: Horror, dread, incredulousness: Pardner, at the very moment I suggested he place some of his excrement in capsules for G and me to use as suppositories in a sort of “at-home fecal transplant,” since, “after all, I am a doctor!” **

“You need help!”/ I need help!

I am raring at the bit to try out my handy new phrase, “I need to find a way to get us out of this trap,” which was offered by a dear friend in response to my overuse of “You need help.” Of course, Z has chosen the last few weeks to be a shining beacon of peace with sporadic detours into insta-mega-tantrums far too shattering to bow in the face of gentle words. It’s as if she can sense when I feel I have our situation somewhat under control and is able, however briefly and incompletely, to relax and/or sidestep my handy new tools. Smartypants.


Bike Riding
It is with profound ambivalence that I share with you the news that G is now at long last able to ride his bike. He himself is jubilant and wants to go faster and faster!

However, the question remains as to whether or not he should ride a bike. That is, he is able to balance and peddle, yes. Other stuff, like stopping the bike, turning, riding on the proper side of the road and listening for cars remains elusive.

Paying Attention
Yesterday, G said, “When you said that it sounded like you were upset.” What was wrong? Nothing! We-e-ell, maybe I was being simultaneously talked-at by two small persons, but otherwise I was FINE.

So he picked up on that tiny bit of irritation? Amazing, especially for what may have been the first time he has ever noticed such a thing.  Oh, happy (not even slightly persnickety) summer day!

Love,
Full Spectrum Mama

* I couldn’t find the article, "The Whole Soy Story, The Dark Side of America's Favorite Health Food," by Kaayla T. Daniel, in the Mothering archives, but I did find this response: http://www.foodrevolution.org/mothering.htm
** (of philosophy)

Diet I – Diarrhea

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:

“Eat Food.

Not too much.

Mostly Plants.”

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.

Gotta go!

Love,

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

See also:http://plato.stanford.edu/entries/aristotle-ethics/#DocMea