I have to start out noting that I’ve got problems with the received medical dogma about eating disorders.

I spent a few weeks in a children’s hospital ward where I was one of two kids (the other had cystic fibrosis) who wasn’t anorexic. The kids were encouraged to talk about what made them not want to eat, but then taught firmly that whatever reasons they brought up were not the real reasons. Except one: Control. Body image, no, that could never be it. Pressure to be thinner than your natural body type as a model, dancer, actor, or gymnast, no, that could never be it either. It was always some combination of a desire to control everyone around you, and OCD. That was it. It was final. It was all about you, never about your surroundings, and always a disease that you had totally independent of other factors.

I have watched a staff person who is insecure about her body and often doesn’t eat because of this, being taught the same thing by her therapist — she is “learning” (she did not know this, but apparently her therapist did) that it’s all about being a control-freak.

(If people wonder why I dream about being put on trial and having evidence submitted that I’ve done something I’ve never did, that is to be taken more seriously than I am… yeah.)

Anyway, that’s all to say, that conceptualizing a thing in this manner can automatically depoliticize it, and shift any and all responsibility off of the people who are encouraging a person to think in this way. With anorexia, there are tons of pressures, some quite explicit, to be thin at all times. Not that nobody can be a control freak in that particular manner, but it seemed strange to me that people’s bosses who told them to lose weight or else they’d be out of a job, were not the ones considered control freaks.

There are a number of pressures on autistic people and families of autistic people (but pressure on family becomes the family pressuring the autistic person, often against that person’s will) to adhere to strict diets of various sorts. Some are stricter than others.

There’s the gluten-free casein-free diet. There’s diets based on plenty of dubious forms of allergy testing. There’s “candida diets” given to people who don’t really have systemic candida overgrowth to begin with (such a thing is very rare, generally too dangerous and obvious to be overlooked for decades, is not the same as localized candida overgrowth such as on the skin, and occurs mainly in severely immunocompromised people, which means people such as people with AIDS, not even most people with autoimmune disorders or anything like that), but whose doctors tell them that the natural candida or other fungus in their system is really an infection. There’s all kinds of food additives that get considered absolutely unsafe and impure. There’s diets based on the color of the food. Fad/quack diets are really common and almost endless in their permutations.

This is not to say that nobody should change their diet, or that nobody has food allergies or intolerances, or diseases (such as, in my case, migraines, reflux, and early-onset gallbladder disease) that can react certain ways to certain sorts of foods. But when a person is told because they are autistic (or because they have some other incurable condition) then they must have these other things, something is wrong here. And even, for instance, with migraine triggers, not every migraine trigger triggers migraines in everyone. I don’t avoid the entire list of foods, just the ones that make my headaches worse, and just in the quantities that actually do make them worse (which for some is any at all, but others it’s okay to eat a little bit). A friend and I both have migraines, but have totally different food triggers. It’s also a safe bet that most people who claim you’re allergic to a huge number of different foods, or else prescribe diets based on your “electromagnetic field”, are incorrect. Real food allergies exist, but are often very severe (for instance, eating a peanut causing anaphylactic shock), and usually are a few very specific kinds of foods (and which ones, vary by age among other things).

Enter the idea of orthorexia. The term was coined about food fads, particularly spiritual and health-food food fads, but it applies equally here. It’s an obsession with eating only the most proper and pure kind of foods. You can read this Original Essay on Orthorexia by the guy who coined the term. He himself has experienced it.

He describes one of his patients, whose asthma he treated with a strict elimination diet:

Recently, Andrea came in for a visit and described the present state of her life. Wherever she goes, she carries a supply of her own food. She doesn’t go many places. Most of the time she stays at home and thinks carefully about what to eat next, because if she slips up, the consequences continue for weeks. The asthma doesn’t come back, but she develops headaches, nausea, and strange moods. She must continuously exert her will against cravings for foods as seemingly innocent as tomatoes and bread.

She was pleased with her improvement and referred many patients to me. But I began to feel ill whenever I saw her name on my schedule. The first rule of medicine is “above all, do no harm.” Had I really helped Andrea, or had I harmed her? If she had been cured of cancer or multiple sclerosis, the development of an obsession might not be too high a price to pay. But when we started treatment, all she had was asthma. If she took her four medications, she also had a life. Now all she has is a menu. She might have been better off if she had never heard of dietary medicine.

There is also an entire page called The Psychology of Idealistic Diets with links to articles about orthorexia.

Basically, a lot of these diets appear at first to make people feel better, because of the same thing that happens to people who starve: There’s a sort of giddy euphoria and extra clarity that happens in early stages of nutritional deprivation. Probably occurs in order to get people clear enough to go find more food. But then when that goes away, then they feel like they need to eliminate more foods in order for it to work again. And so on and so forth.

Also, when you’re not getting enough food, you get obsessed with it, so that all you can think about is what you’re going to eat, and how you’re going to get it. This is why dieters in general are so food-obsessed, and one reason I refuse at this point to restrict my diet any more than absolutely necessary. It’s like that guy said, do you want a life or do you want a menu?

A lot of people also start to feel superior to, and look down their nose at, people with less restricted diets. They say that either those people aren’t as committed spiritually, or are throwing their health away, or aren’t committed enough to their values. I’ve received more than one impassioned lecture from people who insist if I don’t do such-and-such a diet then I only have myself to blame if (insert horrible thing and/or health problem here) happens to me People can become evangelical about diets, much like Luke Jackson’s insistence in one of his books that every autistic person of any kind should try the gluten-free casein-free diet, and many parents’ insistence that parents who don’t do the diets on their kids are to blame if their kids remain autistic.

I am, by the way, an ex-vegetarian, an ex-vegan, and an ex-adherent to all sorts of quack diets that were pushed on me pretty hard. I have had people who adhere to all of those diets insist that I ought to go back to them, and in a few cases insist that I “wasn’t doing vegetarianism and/or veganism properly” if I was unhealthier that way (and believe me, I was unhealthier, and not for lack of supplements — although I note, with all of these diets, it’s way easier to adhere to them the more money you have, so there gets to be an element of classism in this stuff too). Some people become adamant that it’s the person’s fault if various diets make them unhealthy, and feel superior to people who “do those diets wrong”. (Note: I don’t care if other people are vegetarians or vegans or anything else, but I do care when they insist that if I am not, there is something wrong with me. Or that I don’t care about animal rights — in fact part of my reasons for lack of vegetarianism are on animal rights grounds that I find more compelling than animal rights arguments for vegetarianism.)

People also substitute dieting for political or spiritual action. They feel more pure, on both political and spiritual levels, if they adhere to exactly the right diet.

At any rate, I mean this post as a warning, especially to autistic people, who are both over-targeted for fad diets (just like with anyone with an incurable condition) and more likely to carry anything of this nature through in the most absolute manner possible. Having been through this, as well as pressure to act like this (especially when I totally rejected orthorexic eating patterns), I’ve meant to post a warning like this for a long time. For whatever flaws there are to it, orthorexia is a useful concept to keep in mind.


About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Developmentally disabled, physically and cognitively disabled. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died in 2014 and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

20 responses »

  1. “in fact part of my reasons for lack of vegetarianism are on animal rights grounds that I find more compelling than animal rights arguments for vegetarianism”

    That sounds interesting – would you care to elaborate?

  2. It’s not something I’m used to explaining, so this explanation will only be partial.

    Basically, I consider animals (including humans), and plants, to all equally want to be alive. You don’t need a brain to have a drive for survival — all life has a drive for survival, or it wouldn’t survive long (try killing a plant without fully succeeding, or even spraying for mold in your bathroom, and you’ll see what I mean). And equally, all life feeds off of other life in some way. To embrace vegetarianism out of specific respect for animal life seems, to me, to be setting ourselves outside of that system in a very artificial (and somewhat elitist) way. Many of the animals that we would refuse to eat “out of respect for animals,” eat other animals, and will always need to eat other animals. It seems to me that it’s not a mark of respect, for humans (an omnivorous species, pretty much designed to eat certain animals, plants, and fungi) to set ourselves outside the entire system in that sort of way. Rather the opposite, it seems to be simultaneously fearing and running away from death, and embracing death for everything in all the wrong ways.

    I had nagging doubts of that sort the entire time I was a vegetarian, and it’s one reason (health reasons were the other immediate reason) that I stopped. I had been essentially guilt-tripped into vegetarianism to begin with, but I could tell the ideas behind it seemed to lack some sort of solidity.

  3. Neophobia means fear of anything new. I’ve never heard it in reference to eating before, but I assume it’d be fear of new food, and that you’re talking about general autistic pickiness.

    Orthorexia has pretty much nothing to do with that. It doesn’t occur without external exposure to certain ideas, and those ideas are about how eating a restricted diet (of one form or another) is the only possible way to physical or spiritual health, and that deviating from that will lead to the decline of either (and may require some sort of renewed vigilance or even penance). Reread the top stuff about my concerns about medicalizing this, it’s not an individual thing and it cannot occur in isolation.

  4. I think anything that allows one to intensely focus on one thing, allows the person to not think about bigger problems. I think you are right on, though, with the draw, the power of feeling superior or more pure through diet.

    I know someone who ate soap, not just because of pica, but partly because of a desire to cleanse himself/herself of something that was bothering his or her conscience, that should have been dealt with straight on.

  5. The context I’ve heard neophobia used in is describing wild rats. In that context, it goes like this:
    Wild rats living near humans, stealing grain and such to survive and chewing holes in their buildings and such. Human decides to try to kill the rats with poisoned food. Many rats die, but not all, and those that survive have strong neophobia towards food, meaning they are scared of new food and cautious to only eat food they know isn’t poisoned. For that reason, they are far harder to exterminate.
    I’m hesitant to try new foods because I’ve had plenty of experiences where I taste a new food, don’t like it, but because I tasted it I have to finish it. I am most definately not orthorexic, since about all the worrying about food & health I do is a) remembering to eat, and b) trying to eat meal-like things if I’m feeling dizzy, because I have a tendency to blood sugar problems. I’ve had some people suggest various diets for me to try, but I’m not interested. I am kind of interested in trying the hypoglycemia diet because it might make me have less headaches, dizziness and crankiness, but so far it’s too much work.

  6. Oh, Ghod, the fad diets. During our teenage years our mother picked up a book talking about how all kinds of “undesirable behavior” in children was actually the result of food allergies, and put us on this Remove All Sources Of Possible Allergic Reaction radical diet, which mostly consisted of water, rice, and Ry-Krisp crackers, if I’m remembering correctly. (Which did nothing except make us really hungry all the time.)

    Orthorexia was a useful concept for us, also, when we first ran across it– mainly because we used to be very vulnerable to accusations that What You’re Doing Will Harm/Destroy You and Those Around You, and many people who push fad diets use that kind of guilt-tripping to do it. The funny thing was, when we were stringently staying away from Bad Foods, we actually didn’t feel morally superior to those who didn’t; we kind of envied them their lack of hangups. There have actually been several Bad Foods we ended up dumping from our diet because they had obvious negative physical effects on us (not just nonsense like “your colon will be full of years worth of rotting food”), but we’ve also had to minimize our consumption of some things that are generally considered to be very good for you, for the same reasons.

  7. I’ve noticed something about “correct” diets and progressive politics.

    I do think buying, eating and encouraging a market for locally grown and organic foods is a good thing, that can have a positive impact on the environment. I think it is a useful thing people can do to address environmental concerns.

    BUT, for certain people on the left, it’s becoming all about the food. Buying the ‘correct’ food isn’t just treated as supporting a desireable business model; it’s the decisive mark of virtue. Some people seriously act as if they’re single-handedly stopping all pesticide use, bringing down the entire corporate agri-buiness structure, breaking human dependence on fossil fuels, building community, and acheiving a higher spiritual plane just by purchasing a basket of organic apples from a local co-op.

    In my experiences, the people who take things to this level are usually the ones who have impassioned beliefs, but little or no other political involvement. It seems that food purity becomes a substitute, and in some sense a justification for all of the other compromises in their lives. And as they feel more morally compromised, it becomes more important that the correct foods become the be-all, end-all solution to the world’s problems. Because if eating correctly is the only way you’re meeting your ideals, it’s not good enough to make an effort or do one useful thing; it has to be virtuous enough to justify your entire life.

    I’m not sure how that ties into autism. There seems to be an idea about disability in general that people should do as much as they possibly can to fix it, regardless of the cost, as though achieving normality justified any amount of time, money, effort, and pain. The extreme diet restrictions might have something to do with that.

  8. J: Yeah, I’ve noticed that one too. That’s part of what I was referring to with the vague reference to classism, because I’ve found that often the people who do that, have the money/resources/etc to do that. And then talk all the time about how doing that’s the only way to be a good person and wonder why people below a certain income bracket don’t hang around them very much. (Although that’s common with a lot of stuff that requires a certain amount of money to do, not just food stuff.)

    Where it comes in with autism is more in the health-food end of it than the political-food thing (there can be overlap there, but also non-overlap). Then it gets more like, if we remain autistic, we’re not eating right, etc.

  9. I think eating disorders could be validly seen as a over extended desire to control: it’s trying to control the uncontrollable (your own body’s reaction to food, and how other people perceive you).

    Dealing with an elderly parent, I can safely assert that if you want to have a reason not to eat something, you can always find it. And then she wonders why she loses weight.

    BTW: “with migraine triggers, not every migraine trigger triggers migraines in everyone”–have you ever considered a career in writing tongue twisters?

  10. A lot of people discuss trying diets as “free” or almost free, with no negative consequences. Having experience with dieters, though, I know this to be false. My mom dieted herself into obesity. She was very thin yet complained of needing to diet. She concentrated on artificial sweetners and buying anything that said “lite”. She got into the fads throughout the years. She still does.
    She is now on a variety of meds to deal with her diet-induced health problems. She can’t think independently with making menu choices. She’ll abstain from “bad” foods and overeat the so-called “good foods”.
    I know this varies from the type of dieting you’re discussing. But it leads to the same manias.
    Yet, people are very dismissive of any negative side effects of trying diets. My son is very picky, so even if I tried to put him on a diet, I’d probably just starve him. He’d probably think I was punishing him.
    I actually work hard to instill in him not to be nutty over food. We don’t enforce the 3 Squares, no cleaning your plate, and I don’t buy him diet food of any kind. He manages to get his nutrition and calories and he manages to burn it off. That’s the best I can hope for.

  11. Agreed with a lot of this discussion, especially the horrible way in which anorexia (like just about every other sort of mental distress or “self-destructive” behaviour) is individualised and therefore depoliticised by the medical system, and the classism inherent in many forms of veg*ism, health-food obsession, etc.

    I’m vegetarian, but more for (what i see as) environmental/sustainability reasons than “animal rights” reasons (I’m not entirely sure what i think of the concept of “animal rights”, mostly because of the number of people i know into it who agree with Peter Singer about disabled people) – farming animals takes up far more land and energy than farming plants with the same nutritional value to humans. There’s also the fact that I’m very uncomfortable with the concept of keeping animals in captivity (partly because of how much it reminds me of keeping humans in captivity, ie institutions), but that’s really an argument against *farming* animals, not against *eating* them (I don’t have an ethical problem with hunting for food, as long as it’s sustainable, ie not endangering species).

    Ettina – I have some problems similar to you, but tested negative for any sort of blood sugar abnormalities, and for all the other conditions doctors thought could have caused my symptoms (constant or near-constant hunger, inability to put on weight, headaches and dizziness related to waiting too long to eat). I have been told by someone working for an autism-related organisation that these symptoms are actually more likely to be sensory integration problems (thus, they’re the same as what eveyone feels, but I just find it harder to deal with because of my neurological differences), which doesn’t make me happy because it implies there is no possible physical solution for it…

    I don’t really know what to do about people with orthorexia – I know one woman who won’t eat anything not grown organically, is a ridiculously strict vegan (won’t even eat stuff cooked by other vegans just in case it had something accidentally non-vegan in it), won’t take supplements, and has all sorts of other irrational beliefs about food and health (such as, for example, that *all* animals, not just humans, can live on a vegan diet, which is what i suspect caused one of her cats to have the kidney failure it died from) – she seems impossible to convince of anything by rational means, however, so while i still worry for her (surprise surprise, she looks very unhealthy and malnourished, and *clearly* has major fatigue problems) i’ve given up trying to talk to her about food/health politics…

  12. Thank you for this – it’s very timely. I’m seeing a friend who I think I’m ‘losing’ to veganism in a couple of days, and I’m reading this and the links, and while there are no easy answers it might make me less likely to just go in there and yell at her :)

    I also have the headaches-dizziness when not eating (I never forget to eat, just if food is not available, like being very busy or out). I’d always assumed it was 100% metabolism/blood sugar, but a sensory integration aspect sounds interesting.

    I love food, and the study of food, and all the weird and wonderful and non-nutritional ways that humans interact with it. Taboos and ‘good’ foods seem to be as old as humans – orthorexia is tapping into something very deep.

  13. “I’d always assumed it was 100% metabolism/blood sugar, but a sensory integration aspect sounds interesting.”

    well, what i mean is, the metabolism/blood-sugar thing is absolutely there, it’s just the same as what all or nearly all “normal” people experience, but the sensory integration issues associated with being autistic mean I/we notice it more and/or can’t cope with it as easily/the same way…

    Tho i *hope* that’s not true, because it then means there’s nothing physical/chemical that can be done to “treat” it… grrr, i dunno…

  14. Great post. I now have an accurate diagnosis of my step-mom who has somehow gone to doctors who found nothing yet insists on traveling with her own food becuase she believes she is so ‘allergy-prone’ that she will become allergic to any food she eats more than a couple days in succession.
    I work with autistic kids and am gluten-intolerant. I don’t become autistic if I eat breat. I get grumpy and short tempered from the nutrient deprivation (and somewhat irregular). Food allergies are real but generally just cause headaches and irregular BMs. Thank you again.

  15. This is a late response to this post, I realize, but I did want to bring up the fact that social pressures can work in the “other” direction in some cases. I am not a strict vegetarian but I usually avoid most meat because I have a lot of sensory issues related to the texture. And I’ve had plenty of people get hostile toward me for my preference…telling me things like, “You’re going against nature by not eating meat!” and, “People like you would just die if you lived in the Stone Age”.

    I also have had people harass me for the size and content of my lunches (I don’t like to eat a lot in the middle of the day because long lunches disorient and sedate me, and I eat a lot of vegetables simply because I like them, not because I’m trying to follow any kind of fad). I’ve taken a long time figuring out nutritional stuff, and the way I eat now is the result of a process of figuring out how to feed myself things that (a) I can prepare and store easily, and (b) that don’t do weird things with my blood sugar, since I used to have what I thought were “panic attacks” but that turned out to be reactive hypoglycemia episodes. So, I certainly don’t expect my diet to cure anything or give me magical powers…I’ve just found a way of eating that works for me, and it is very annoying to have people come along and tell me that I need to start eating more hamburgers or that not having cake at some kind of event means I’m being a “snob” or thinking I’m “better than everyone else” for abstaining.

    While orthorexia is problematic in that it’s generally based on some kind of pseudoscientific idea, I think it’s related to a bigger problem that consists of people being too nosy and controlling with respect to what other people are eating.

  16. My son has PDD, which falls in the autism spectrum disorder. Because he is now 3 1/2 he now only qualifies for services through the Chicago Public Schools. His difficulty is with food. Because this doesn’t affect him educationally the school system doesn’t give this issue precedence. He only eats a few things over and over again, and sometimes doesn’t want to eat. Since he doesn’t lose weight the doctors don’t respond to my requests for help. He gags and says everything is yucky and won’t even attempt to try things. The doctor suggested mixing supplements into his milk. I didn’t want him to notice it so I only started with 1 teaspoon, Alas he noticed and now it’s been approx. 2 months since he’s had milk. They say he has sensory issues. He hates to be dirty and doesn’t even like to have a drop of water fall on him, but has gotten progressively better. My issue is with food and I don’t understand how I can help him eat more of it. The gerber food has to go. I feed him gerber to make sure he gets nutrious food but he sometimes tell me he’s hungry even after having several jars of Gerber but just won’t eat anything else. Or at times he’ll ask for something, take one bite and then gag and then will start crying. I’d appreciate any advice you may be able to give me. You’ve made me realize that there are an infinte amount of possibilities for my sons future. I can now breath easier, through you I have come to realize my son will be just fine.
    Thank You,
    Dallia Aguilar :) Dallia74@aol.com

  17. shiva,

    I’m a vegetarian (most of the time) for the same reason as you and I get all kinds of people, mainly meat-eaters, lording it over me when I choose to have a steak. I’m of the opinion that it’s like contributing to charity; I can do the 20 bucks a month and I’m not a hypocrite for not donating my entire income. I eat very little meat, and sometimes I treat myself because I still miss how it tastes. I think this is better than nothing and it’s part of my identity as an environmentally conscious person. Other people think it makes me a hypocrite. So I end up doing my occasional meat in secret, which I hate.

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