Forgetting to eat, and food insecurity
Content warning: non-graphic mentions of eating disorders.
I started on (and almost finished!) a response to an interesting post from Lindsay recently, Born This Way–along with an older post linked from there which I had somehow missed previously–Doubly Deviant: On Being Queer and Autistic–but some combination of a buggy crashing browser/OS and WordPress fail lost better than an hour’s work in spite of multiple auto and manual saves in that time. With any luck, I will have the time and energy to get back to finishing that soon.
But, I haven’t been getting much writing done lately, pretty much having to focus on getting enough to eat as at least a three-quarter-time job. Not surprisingly, lack of food also hasn’t been making me feel the best ever (especially since I am Type 2 diabetic *facepalm*). Since this is apparently a very common problem for autistic people, I thought I would write about that some.
I have even been too overwhelmed and low on energy to pay much attention to several food-related threads on the Autistic Daily Living list lately! It’s darkly funny when you are having enough trouble with daily living that you can’t do more than lurk on a list dedicated to exactly that.
Last year, I wrote something else on this: Structured eating works! Yeah, it did work well as long as I could keep up with making food in advance, ready to heat or eat cold. (Actually, I gave that another go with the bento-inspired plan, but yeah.) But, besides the executive function stuff, I think the fatigue, brain fog, and pain from the D deficiency helped scuttle that plan. After a couple of months, I was back to realizing I hadn’t eaten anything all day once I was hungry enough to just stare blankly into the fridge hoping something convenient would appear in front of me. I’m hoping that, given some more information about why this kind of thing is a problem, I can figure out some better workarounds.
And it’s become a pressing problem recently, since I was already on the verge of too thin for me but have gone over again into low enough body fat that it’s messing with my hormones. Also, to go along with the results of the Minnesota Starvation Experiment, food obsession and eating disorder-type thought loops have been popping up again, which has been challenging to say the least. This has happened before–particularly when I lost a lot of weight quickly from illness–but now I can recognize them for what they are and hopefully continue to resist the urges to also purposely reduce my food intake in response. Or to consider the hunger signals a sign that I’m doing something right. 😦 (I’ve been going for booster doses of FA blogs, you bet!)
That would also be a big reason I’ve been taking a break from food blogging. Usually now I can handle that kind of thing just fine, but encouraging obsessing over food is maybe not so good with the disordered thinking around eating popping back up. Glad to have figured out that it’s probably coming straight from reaching a certain nutrient deprivation/food insecurity of a certain kind point, and I’m not just suddenly relapsing or anything! With any luck, that will become less of a problem again with decent nutrition.
Mr. U is taking a couple of weeks’ vacation time, so I am being reminded just by his being around that hey, food is a good plan. I do seem to need prompts to remind me. This also seemed like an especially good time (besides necessary, with noticing that I’ve been in starvation mode 😐 ) to try to come up with some better strategies to make sure I get enough to eat on some kind of regular schedule. A good expression of some of the task-switching problems involved, from one of Anne Corwin’s series on similar problems, On The Feeding of Quirky Mammals, Part 3:
Now, everyone alive probably experiences transition issues to some extent.
But I am mainly gearing this piece toward people who can relate to things like, say
…having a refrigerator full of food but ending up skipping dinner because you are in the living room and the fridge isn’t where you can see it,
…or going “WTF, brain?” upon realizing you’ve managed to read half a book and build up a Lego kit but somehow can’t figure out how to make yourself a sandwich, even though you’ve made sandwiches before and know intellectually what steps are involved.
…or repeatedly going “I’ll eat right after I finish [thing]”, even when [thing] ends up stretching over a period of many hours, as you know that you risk losing a ton of work and not being able to jump back into the task readily if you take a break.
If you’ve never experienced anything like this then you might have trouble imagining how anyone could (without it being something as simple as a “willpower issue”). But if you have experienced it you will likely know exactly what I mean when I say that transition issues are not really related to willpower (and can actually be exacerbated by trying to “push” too hard in a particular direction), and that they can exist even when someone is totally intellectually aware of the importance of proper nutrition, and highly motivated to live in a healthy manner.
In other words, I am writing this from the standpoint of someone who has been in the position of having figured out I’m hungry, knowing full well I should eat, knowing that I need a certain amount of water and nutrients to survive and function optimally, and having tremendous motivation — and yet still not eating well. Clearly if a person is in that situation, the issue is not going to be addressed by reading a book on willpower or studying up on vitamin ratios! But what will it be addressed by?
Exactly. “WTF, brain?” just about covers it. This can be very, very frustrating and make you feel stupid sometimes. I also get extra shame going sometimes because this sort of thing was treated as symptoms of mental illness in past–and, no, meds are just not gonna magically make this improve.++ And, indeed, the embarrassment, etc. won’t help you get some nutrition in, but is likely to make that more difficult.
Looking for some ideas, I ran across one post at Aspects of Aspergers that helped make some connections. To avoid repeating the commentary, I am tempted to paste in a reformatted and edited version of an e-mail I sent Mr. U (from the phone, thus the choppiness):
Was looking for more strategies for keeping yourself fed better (very, very common problem –and exactly why some relatives, including my Nana and biodad, have tended to get seriously underweight). Also ran across another very useful thing to keep in mind that I hadn’t actually put together before with the inertia and task switching things:
I see a very visual illustration of this in the fact that objects in my house remind me of what I need to do. I have started putting a glass of water in my kitchen, so that when I come down in the morning, I see it and drink it. I always refill it, so that whenever I see it, I drink it. Whenever my dad visits, he is always telling me I need to tidy my house and ‘put things away’, and he gets very annoyed by the mess – but the truth is that having things all out on display is actually a really helpful strategy for me. I have learnt not to put things in the closed drawers of my fridge, for instance, because I forget they are there. When I open my fridge, I eat things that I see. It’s not that I don’t know, at an abstract level, that there are drawers with food in them – obviously I know that, and I can remember putting the food in them – but it’s more that I don’t think of it while I’m focusing on something else.
Ties in with the list on fridge door idea, too. [List of contents so you don’t forget what’s in there until it goes bad. I keep forgetting to eat things intended for lunch, which are in plain sight.] I know I do this too, which helps with the clutter. (Mention in comments of there getting to be *too* much stuff out after a while, so it’s overwhelming. Erm, yeah. Along with browser tab clutter I’d already kinda connected.) And attempts at organizing that don’t take this need into account just don’t work out. Glad to see things connected!
Probably also one reason I did better with less clutter when living on campus: not just less stuff, but all open shelf storage except for the closet. Will have to give this a lot of thought with an eye to workarounds that actually work in a sustainable way.
This would also be why I rarely start cooking until reminded because you’re coming home. And then sometimes will get caught up doing something else and only be reminded again that food needs cooked when you get in. It’s not that I’m being lazy or not wanting food. I also get so hungry and hypoglycemic that it’s hard to get things together enough to cook, with all the steps that requires.
Yeah, I’m tempted to try cooking more at a time when I feel like doing that, to freeze. And maybe get a habit going of, say, pulling something out of the freezer when I get my coffee first thing. Just having a main dish ready would be very handy. If I can figure out how to get organized with the cooking, that would save a lot of task switching on a daily basis. Also do something similar with advance prep of stuff to eat during the day. (Which didn’t totally work out for me the last time, but I can hopefully find tactics that do work long enough to set a routine.)
I may also try to work around resenting schedules–even ones I make!–and give planned eating times another go. Some of these things should maybe make things less stressful, and I do spend enough time and energy stressing over this kind of thing that it’s harder to get that or other things done.
Guess I’ve been a bit embarrassed to admit how much trouble this kind of thing can be, but yeah. I don’t really rationally think that you will think less of me or treat me with less respect if I admit to having certain difficulties, but some habits really are hard to break (hackneyed for a reason).
I also suspect that’s why I got into the habit of keeping a drink at hand, BTW, besides growing up with an undiagnosed diabetic who drank a lot: if it’s right there, I usually remember to drink it. Unless the glass goes empty and I keep putting off refilling. Not so practical with food, though keeping things visible to snack on might help. (Have seen other people mention doing this, too–and kinda wish I’d tried it then!) Also harder to notice, with a drink ready all the time, if you gradually get thirstier, yeah…
I wouldn’t describe experience in quite the same terms as this person, but yeah. My focus is not usually so fixed on one thing, but it’s so easy to get preoccupied. And then you’re just not feeling the hunger after a while, until you get stomach pain or low blood sugar symptoms hard to put off “just a little while longer, until I finish X”. (Yes, I did used to take advantage of this tendency–and try to stay somewhat on guard against slipping into it again.)
Sorry to go on and on, but those is also at least partly trying to get thoughts down while I’m still on the subject. (Thus also sending it to my other account.)
Not so easy to follow, possibly. But, that does include mention of a workaround for food that I had been considering: freezer cooking. In a way, it’s lucky that I do actually enjoy cooking when I’m in the mood to do it and not under a lot of time pressure. (Since I can go in the kitchen to start cutting vegetables at 5 p.m., and not have food ready until 9 or 10. When it should be a quick and easy dish. Seriously.) With a running inventory written in dry-erase marker on the door. Besides reigning in the “ghost poverty” cheapness (“must save 50p per unit in exchange for more work required!” *facepalm*) and keeping more low-prep and ready-to-eat things on hand, that might help.
The freezer list in on the fridge door because our fairly standard British refrigerator is shorter than I am, with the freezer compartment on the bottom. Get down in the floor, or write both lists on the top… At least it has more freezer space, with handy basket drawers, than the “little freezer cube on top” ones I was used to raining poorly-stacked packages of food on my head in the US. (“Don’t buy the turkey. Please, no!”) Still, we may get a dedicated freezer once we figure out where to put it.
With any luck, my brain will reliably be able to connect the text with the actual item. As a bonus, maybe there won’t be the lone dessicated pieces of food lurking in the freezer so much! (Did I mention that I hate wasting food? And I just threw another batch of assorted crap away.) As reflected by the “pasta sauce?”–starred for quicker attention!–I need to pick up more labels before freezing much more stuff. 😉 Although that can lead to some interesting combos, like rajma curry on a cheesed-up baked potato, instead of chili–which was good enough to try again on purpose. (I am going to have to try the cumin rice from that recipe!)
My piecemeal attempts at making extra or just freezing leftovers have come in handy if I actually remember the food is in there. (I have trouble stopping automatically cooking at least an extra hospitality portion, even though nobody ever drops by at mealtimes–so we often have leftovers!) With any luck, I can also save a lot of time and energy by, say, setting aside one day every week or two to get a grocery delivery and cook multiple things to freeze–maybe hooking Mr. U in for some assembly line duty. Maybe in close proximity to the (oh-so-handy) veg box delivery, so less fridge Tetris–to get the small fridge temporarily mostly stuffed with veggies!–is required.
I have hesitated to try this in past, in part because it seemed lazy *headdesk*, but it is definitely worth a try. (Can’t tell I picked up some disablist messages, which didn’t always even make sense, growing up, eh? Including from someone who herself had a chronic pain and fatigue condition. 😦 ) As is making a better go at packaging up multiple lunches and snacks in advance, so I don’t have to think about it every night like I was doing before.
I may try setting eating reminders during the day with an alert tone that doesn’t get on my nerves too badly, so that I hopefully won’t just go “oh crap, the calendar app nagging me again!” and ignore it. Demand resistance, yay! Mr. U has also offered to text me reminders, but I hope that won’t be necessary.
As it is, my days end up too often arranged around cooking supper (even if I actually get started late, I’ve been thinking about it for hours and getting less able to cook in a sensible manner from the stress!), and it ends up being a huge energy drain and time-related stressor on a daily basis. It’s hard to get other stuff done. That’s less than ideal.
Mr. U has been at least semi-aware of the problem, and has volunteered a couple of times to cook after he comes in from work. He enjoys cooking anyway. I appreciate the gesture, but I just don’t feel right about that (disability shame is probably part of it, yeah). I’d rather figure out how to work around the problem(s) for when he’s not around, anyway. Which isn’t intended to sound grim; he goes on business trips, and there is always during the day to deal with.
Also, to be honest, not only would it be a schedule disruption but I get thrown off balance to the point that I just have to go away and stop looking when somebody else is messing around in the kitchen and moving stuff around so I can’t find it later. (Which is, indeed, not great especially since it started out his kitchen!) That kind of ties back into the “organizing through apparent clutter” thing, to the point that I am tempted to remove some cabinet doors so I might actually put stuff back in there more promptly instead of leaving it on the counters where I can see it. Preferring not to have other people working in the kitchen may resemble control freak behavior on the surface, but it’s different, if still annoying.
Another related problem: getting stuck in a culinary rut, if I’m not careful to avoid it. One post that I found by accident, looking for info on dealing with medical-related PTSD (and, yeah, going back through the archives at First, Do No Harm I kept getting triggered–not only with crappiness related to size): Autism + fat = bad care from doctor (who won’t listen). (BTDT, still half-expecting that kind of treatment because my BMI runs 27-28 even when, erm, undernourished enough to screw with my hormones.) It’s a rather long quote, but I can’t figure out how to shorten it while keeping a decent description of the problem.
While all of this was going on, of course, I tried several times to bring up another problem I’ve been having. I mentioned my autism before, right? Well, one of the problems associated with it is that I often have a lot of trouble planning things. Without a routine, I can take ten times as long as most people when I do something because I have trouble picturing in my head what I’m going to do next and how to deal with things on the fly. I partially solve this by planning things in writing before I do them, and of course I have routines for important things like taking a shower, cleaning my apartment, or going to school or work. Wouldn’t, in fact, be able to manage either school or work without them.
One thing, unfortunately, that hasn’t responded to that strategy is meal-planning, cooking, and eating. If I use a routine–as I’m doing now–I start to eat the same things every day. Currently, my diet consists of oatmeal and a peach for breakfast, an egg-and-cheese sandwich, fruit jell-o, and yoghurt for lunch, and either frozen spaghetti or soup for dinner. I am well aware this puts me at a serious risk of nutritional deficiency diseases; I’ve seen it happen to other autistic people, and it’s just not something you want. I take a multivitamin, but that’s just not going to cover all your bases when you are eating the same thing every day. I’ve tried to bring up this problem with my doctor several times. All I ever get are pamphlets on extremely basic nutrition and recommendations about Weight Watchers.
He simply cannot seem to get it into hs head that I am not asking about weight loss. What else could a fat woman possibly ask about, right?
I’ve studied nutrition. I know exactly what a good diet consists of. The problem is that if I were to focus on getting myself a perfect diet, I would have to drop other important things like going to school. There is only so much time in your day when you have problems with planning to the point that you didn’t learn how to take regular showers until you were twenty.
My problem isn’t a lack of information about what to eat, or bad self-control, or too much fast food, or any of the other things he seems to think about me. It is that I do not have a skill I need, and have tried to learn it, but have not been successful, and would like someone to teach me. I need, probably, an occupational therapist–not a dietician or a diet support group–but when you are on Medicaid, you have to go through your GP to get anything like that. He doesn’t seem to understand why I could possibly be worried about nutritional deficiency, since I am “obviously” eating enough. He doesn’t seem to understand that nutritional deficiency can and does happen to 200-pound women, if they are autistic and eating the same thing every day just to be able to eat anything at all. I really don’t know how to solve this, and it is driving me up the wall. I really don’t want to spend another twenty years learning how to do something somebody could just have taught me how to do…
From past experience, I would be afraid to even mention that kind of problem to a medical professional in the first place, with some of the mental health-related interpretations that could be placed on it. (Argh, weird! Can’t care for yourself! Possibly a danger!) Nor would I expect them to have any idea what might help, even if they did take the problem seriously. It’s frustrating, and I hope she found something that works for her. But, yeah, another quote from e-mail commentary to Mr. U, link added:
Another uncomfortably familiar common problem, having run across the post more or less by accident. (Cheese and oatcakes, anyone?!) [And fruity yogurt, and bananas…]
I’ve mostly been relying on suppers for variety, and it takes a lot of time and energy not to get into serious ruts with that. (Incidentally how we were getting spaghetti several nights a week before, when I was younger, with everybody exhausted from work/school and nobody in the house having that kind of planning as a strength.) Was interested to see someone suggest the freeze stuff in advance approach, too.
And, yeah, I’ve seen other people–many autistic, yeah– talk about the assumption that if you look like you’re getting enough food, obviously you couldn’t be having any kind of nutritional problems. (To go along frequently with the if you look “high functioning” in some way, you can’t be having any real problems, which she implied too.) Kinda figure that helped override the common medical knowledge that celiac *will* leave you with deficiencies, for that matter. Especially with lazy bigoted GP who kept outright insulting me (and not wanting to hear about actual problems, and denying birth control I could tolerate, and…) because of BMI. That was OTT, but still normalized enough that I thought I had to put up with it.
Oh yes, was also struck again by the 200 lbs. as a lot for any young woman to weigh thing, rather than “a lot for me as an individual”. I can’t be more than 20 under that now, judging by past experience. Keep seeing things like that, with the emphasis on numbers over people or any kind of nuanced judgment. Very, very common theme.
Not that the last bits are relevant in this context, other than in a “gee, society sure doesn’t help you develop less screwed-up eating habits” kind of way. But, I thought I’d leave them in. (BTW, my blood pressure must still be running lowish normally, in spite of insulin resistance–used to be 100/55 or so–since it keeps getting measured at high normal or slightly elevated when I’m (a) in pain or other serious physical distress, or I wouldn’t be there; (b) having panic attacks because I really don’t want to be there, even so; and (c) frequently with too tight a cuff–who knew it wasn’t supposed to hurt?!+ So far I’ve avoided prescriptions being pushed at me. Knock wood.)
The idea is that, before we worry about nutrition (i.e., “instrumental food”) we’ve first got to HAVE food. Enough of it. Consistently. And it’s got to be acceptable to us (which, for some people, might mean not coming from the garbage, or meeting certain standards of preparation) and it’s got to taste reasonably good. A little variety is nice, too…
For most of us, this becomes apparent for the second reason listed above — when we’re hungry. I’m sure you’ve noticed how cake and fried foods and whatnot become SUPER MASSIVELY APPEALING when you’ve either missed a meal or started a diet.
It’s not because you lack willpower or have an inborn preference for BAD, BAD JUNK FOOD — it’s because those foods are naturally jam-packed full of what you need right that instant: energy. Meaning, calories — most of them coming from carbohydrate (whether it’s starch or sugar) for instant energy, and fat for MOAR energy (and tasty, creamy mouthfeel, to boot.)
So, extend this to someone who doesn’t have enough food on a regular basis. In my neighbourhood, which is poor, corner stores sell Ensure and Boost individually for about $2, right up in a big display near the counter. You find empty bottles of the stuff laying around on the sidewalk next to smashed beer bottles.
Actually, when I was having trouble eating for various reasons the last time I was back in the US, I filled in the gaps some with sugar-free Carnation Instant Breakfast mixes. Made with soy milk once I’d reached my lactose limit for the day; good thing my tolerance is not super low, since that’s full of milk powder! (The hospice staff were recommending that over exorbitantly priced specialist diabetic Ensure-alike. And it also came in handy for me, as caregiver.) And it helped a lot. I would try it now if you could buy it in the UK.
The whole post made total sense to me, and I am interested in reading more from Ellyn Satter. (Everything that’s come up over at The Fat Nutritionist has sounded very reasonable.) No matter why you’re short on food or have an unreliable supply of it, your body knows and reacts. I have been craving high-energy stuff, and am going with it for now, and worrying about better variety later. And trying not to feel bad about some veg box contents going to waste, since I’m wanting the higher-energy stuff and don’t feel like messing with fresh veggies as much when I haven’t eaten most of the day! I also feel less bad, with some validation, about having to cave and start eating meat again to get the energy and nutrients I need, over the “instrumental” value of doing the wild pescetarian thing. Especially if you’ve already got special dietary requirements (celiac, diabetes, extra minerals for rebuilding bone), something’s gotta give, past a certain point.
Actually, I have been interested, since I’ve been doing more reading, in just how much food insecurity of various kinds I grew up with and internalized to the point of having trouble throwing stuff away–not just from economic pressures, though we did always have enough to eat even if it took a lot of effort sometimes, but from engineered scarcity on a more individual level. Severely restricting your own diet is inflicting food insecurity on yourself and sometimes on the people around you–and it shows in some of the behaviors that come out when you do that. (I think a lot of my mom’s troublesome food hoarding had more to do with her eating disorder than our actually being poor a lot of the time.)
More good commentary here: Hierarchy of Food Needs: How Do You Get GOOD Food When There’s No Food? | A Black Girl’s Guide To Weight Loss (even if I don’t like the blog’s emphasis so much, for me at least):
What is novel food? “At this level on the hierarchy, the prospect of wasting unappealing food is less risky, and experimenting with novel food becomes a possibility. Seeking novelty is a natural tendency with respect to human endeavor. However, fearing waste, a person functioning at a lower level on Satter’s Hierarchy of Food Needs is unlikely to choose unfamiliar food prepared in unfamiliar ways. Almost half of surveyed low-income parents say they avoid introducing new food items because their child doesn’t want them.
Lastly, and (to me) most interestingly… the concept of instrumental food: “The person functioning at the apex of Satter’s Hierarchy of Food Needs reliably gets enough to eat of rewarding food and has food acceptance skills that are good enough to allow him or her to eat a variety of food. That person is thus in a position to consider choosing food for instrumental reasons: to achieve a desired physical, cognitive, or spiritual outcome.” So basically, most people who “shop purely organic” or are “strict vegans, and advocate that you do the same” are in this group. Far more privileged than the people they’re trying to influence to live like them. Just sayin’.
Ouch. Mr. U and I were just discussing last night, when I was trying out a new recipe (good, with about twice the meat used for a main dish without rice), that I know I hesitate to try new things because it might turn out inedible. We can, however, afford to say “Forget it. Time for delivery!” and just throw it away if it’s nasty. I do wonder how much of this “must not waste!” factor is from trained food insecurity ideas and how much is from getting the disability-related undernutrition going. And how much of the food repetitiveness autistic people are kind of known for might be coming from not being sure you will always have access to stuff that is nutritious and decent-tasting, especially with sensory issues and all the other complicating factors thrown in. (Including poverty, especially for a lot of adults.)
This ended up being a pretty scattered post, but I just decided to throw a bunch of stuff out there having to do with the problems I’ve been running into with getting reasonably fed.
Any kind of feedback would be very welcome from anyone who has encountered similar problems! I’d be very interested in what has worked for you, or pointers to more information that might be useful.
+ With the (never officially diagnosed) D deficiency/osteomalacia, for years I have also shown the Trousseau sign of latent tetany with a normal blood pressure reading inflation period–or however long it takes them to inflate, listen, frown, inflate some more, etc.; maybe it sounds funny when the cuff is too small? 😐 At the very least my arm and hand did indeed go into obvious spasm, which ought to suggest that something is not right. And I’ve gotten fussed at for my arm jerking involuntarily. Which hurts like bejeezus in itself. All of which is a different story entirely, but…
++ I thought maybe I should clarify that bit of snarkiness. I was not suggesting that this is really how medications work, but that an appalling number of people (including some doctors, who should know better) seem to think they do. And will get frustrated and sometimes take it out on the medicated person when it becomes obvious that, no, “we” will likely not eventually find medication(s) that will render the person totally non-weird acting and able to lead a “normal” life in ways considered important. If the treatment just doesn’t work, maybe it’s time to reconsider the base assumptions there.
Gave up on the normality bit a while back, and am trying to get on with the living. Sometimes some non-medicalized, non-stigmatizing practical help with learning how to deal with difficulties would be nice, though. (Such as, oh, the stuff discussed here.) Based in a recognition that, hey, people do experience life differently at some levels also considered important–and it does not pay just to assume that reasons for encountering a particular difficulty are one size fits all. That kind of help ought to be available to anyone.
BTW, I am also not setting myself up as somehow inherently different from–much less better than–people who have “real” mental illnesses. That would be particularly bizarre, though that does not stop some people. (The post I was going to link to there is on a blog which has since gone private. But, the gist was pretty much what was discussed here, with a lot of awesome commentary and examples of cramming things that don’t fit into constructed binaries.)