The Accidental Anorexic or At the Intersection of Autism and Eating Disorders

Well.

Turns out I have been eating under the lowest recommended calorie rate (1200 for women) for many, many years, for the majority of most days of the week. If I'd been doing this intentionally, I'd be an anorexic. Nobody in the medical field wants to believe that someone can do this accidentally and still be overweight and relatively healthy.

But I don't have a good relationship with my stomach. When I was a kid, I joked that I had a cast iron stomach because I could eat anything. Didn't realize that my definition of "anything" was pretty limited, actually, and didn't include spicy food at all. Well, I didn't like spicy food. Why would I eat it?

Here's the thing though. I didn't eat because I was hungry, or because food tasted good. I ate food that didn't taste bad to me (there's a big difference there!) and I ate because I had to. My mom insisted on it. But she wasn't making me eat just to eat; she insisted on it because "you have to have food to make your body go." In other words, if I wanted to do stuff, to go anywhere and do anything, I had to have food.

So I ate. Rather reluctantly and out of habit. And that's the autism at work. I didn't have a good relationship with food and taste and my stomach simply because I don't have a good grasp on any of my emotions and physical sensations. I often get them mixed up, and rarely, even now, know what I'm feeling.

If my stomach feels "bad" I have two options: one, I'm hungry, or two, I'm sick. I've developed a plan based on experimentation. I eat something, and if I feel worse, then I'm sick and shouldn't eat more; if I feel better, then I was hungry. You already see how this is a problem. Sometimes if you're very hungry, eating a little bit can make you feel worse as your stomach says, hey, just getting used to being empty down here, what'd you do that for?! And if you're sick, you're using more energy trying to get rid of the infection, so you actually need more food.

Now that I have an official eating disorder (binge disorder, not anorexia), I have to eat no matter what my stomach is telling me, or what I think it's telling me anyway.

It's working better this way, to be honest. Last week I had a horrible stressful day and I didn't want to eat anything. I wanted to throw the whole bedamned food plan out the window and just not eat, do what I wanted to do when it came to food and not what I should be doing.

After all, people have cheat days, right? People have fasting days? Some people even have it as part of their religion. Just one day won't hurt. And I felt so nauseous.  I really, really, didn't want to eat.

But I did it anyway. Thank goodness for autistic routines. I've been doing this food "three times a day plus snacks" since January and it's been enough to trigger a routine. So it was honestly easier to eat what I'd brought to eat when I'd planned to eat it than fight the routine ... Even though I badly wanted to just skip the whole thing.

And by that evening, I felt much better and was glad I hadn't thrown over my recovery for one stressful day.

Because the autistic routines can be made to help you or you can be at their mercy, but if you're using one to help you and you break it, even for a moment, even for a day, you risk shutting the whole thing down. It's like part of my brain is a bratty child that if it can't have its routine, then I can't have that routine either. Ever again.

The biggest problem with therapists is they don't realize this. They don't understand what a powerful tool an autistic routine can be in recovery and they don't understand how incapable some of us are in understanding our feelings...even hunger. So they try to make us flexible in our eating choices (no, because to me, flexibility means "yes, I don't have to eat when I'm stressed, Whoo hoo!") and try to submerge the routines because for neurotypical people, "inflexible routines" rapidly become distressing to them.

Whereas to people like me, it's helpful, useful, and calming to have routines. I don't have to worry I'm going to make myself too skinny or too fat. I have my food routine and my calorie counting app to ensure that I'm eating enough even when stressed and not eating too much even when bored or happy.

I wish people who specialize in helping people with eating disorders could also sub-specialize in helping people who are autistic with eating disorders. Judging by the statistics I've come across in researching how to "make me better" (as far as the eating disorder goes), female autistic people have an awfully high incidence of eating disorders.

But I'm the in middle of it and even I keep discovering the interplay between the two. I just want someone to have discovered this already and put viable options out there, not just the stuff they tell neurotypical people to help them recover.

Humph. Also, I found out that resetting my metabolism is going to take probably a year at the least and I'm not even at the beginning yet ... You have to get back up to what your true maintenance calories are before you get to say "now I'm resetting my metabolism." So what, I'll have "recovered" by 2018? The end of that year?

And I think I will always have the "stress means don't eat" response ... Just like an alcoholic who hasn't had a drink in many years, but still can't go into a bar.

But hey, good news on the food control front: I had the opportunity to binge on chocolate chip cookies, homemade, my worst binge food, on a Saturday which is my worst binge day, and I had two. Two that were planned and in my calorie allowance for the day.

Am I Pretty?

You know, don't you. You know if you're pretty, or attractive, or cute, or handsome, or whatever adjective strikes your fancy as something you want to be.

But I don't. I have no clue if I'm pretty or not. I have absolutely no idea whether looking at my face gives people pleasure because they find it attractive or repulses people because they find it unattractive. I don't think I'm ugly, mainly because it seems like there are few truly ugly people (or at least, that I think are really ugly) and those people get uncontrollable physical reactions from others.

In other words, people flinch when they see a really ugly face but they control the reaction and try to pretend it didn't happen. Something along the same lines as when they realize that someone is missing an arm or leg and is wearing a prosthetic. That same wince and cover-up. People don't do that to me so I don't think I qualify as ugly.

Am I pretty, though? Maybe it shouldn't matter. I'd like to know, even if it doesn't matter.

But there is literally no one you can ask that question of and get a straight answer. I've thought about this (probably too much) a lot and gone through a whole host of people I could ask.

My mom. Nope. She's going to tell me I'm pretty (and probably add something about pretty is as pretty does, or something religious). She's going to think that I'm pretty because she loves me, and cares about me, and obviously, if you ask the question, am I pretty, you do not want the answer of "no" even if it's true.

Unless you're me.

My siblings. Nope again. Same reason as my mom, with the added confusion of sibling rivalry and teasing going on. No matter what they said, I couldn't trust it to be truth--they could be teasing me or just fed up with me that day and say "you aren't."

My friends. Well, of course they aren't going to tell me I'm unattractive. Your friends aren't supposed to say things like that. Even I've learned that. And, oddly enough, not the hard way, the way I learn most social interaction rules. So they're useless for the truth in this situation.

My enemies? If I could identify who was someone who truly disliked me vs someone who just doesn't care, even if I could, that's a stupid idea. They're going to want to hurt me. Depending how subtle they are, they're going to tell me I'm unattractive (no matter what the truth), or they'll tell me I am attractive but "let" me overhear them mocking me for asking the question later, and saying to one of their friends that they can't believe I asked such a stupid question but they just "didn't feel right" telling me the truth so of course they told me I was pretty.

People who don't know me and don't care? Well, it's a very odd thing to ask a random stranger. If it's a guy, they'd think I'm flirting, and say I'm pretty so I keep flirting with them (given that we've already established I'm not ugly). If it's a woman, it kind of depends on what kind of person she is and how her day has been; if she likes to cut other women down or build them up; if she's under a lot of stress, etc. But most likely the answer will be that "you're pretty" because everyone knows that telling someone she's not pretty, especially if she's acting all vulnerable and childlike by asking you directly, is a good way to really make someone's day very bad. And most people don't want to make you feel bad--not if they're total strangers.

So that's it. All the different groups of people I could ask. And not a single one could be trusted to tell me if I'm actually attractive or just okay to look at.

And why don't I know? Everyone else seems to have a good idea if they're attractive or not. Is it because of the prosopagnosia, that I can't remember my own face once I turn away from the mirror? I don't seem to repel my own self in the mirror, but that just could be because I'm used to me.

Or is it something with the autism, making me not able to see a physical worth judgement that my culture holds dear but I don't understand?

In any case, sometimes it bothers me. Like a tiny hangnail, so tiny you forget which finger it's on when you actually get to a location with a nail clippers. Just a little bit.

Am I pretty?

Disaster at the Post Office

It's been one of those horrid weeks were everything just piles on top of everything. Because I had to take Colby to the vet on Friday, I hadn't been able to get enough done at work, so I had to come in on Saturday (not a normal work day for me), and because I had to come on Saturday, I also had to fit in a visit to the post office and grocery shopping. The post office was before work since it would close by the time I left.

I only had one package to mail, something I'd promised to mail by that day on swapadvd.com. I also had potentially a friend's birthday that night and nothing purchased for them. And there, at the post office, like a lifeline from a friendly rescue officer, was a gift card display.

And it had the restaurant gift card where she likes to go, and it was a "set your own price" gift card. Absolutely perfect.

So I tried to buy it while mailing my package.

And the system tells the poor clerk only after it runs my credit card that I can't use a credit card to buy the gift card (I always have before, although never at the post office, and not at Walgreens but there's a big sign on the gift card display at Walgreens letting you know you can't use a credit card but must have debit or cash). There was no sign on the post office display. I checked.

And then the stupid system won't let her cancel the gift card purchase, get this, because it already ran the credit card. It won't use the credit card for the payment, but it won't let you remove the item it won't let you buy.

I don't have cash. It makes me feel vulnerable and with four anxiety disorders (or is it five now? I've lost track) I don't need to do something that makes me more anxious.

And I don't have a debit card. I don't like them. I don't like my money going "poof" out of my bank account before I have a chance to verify the purchase. If I go home and my credit card receipt is wrong, I can go back and have it fixed and even if the store won't fix it, the credit card company will. The bank for a debit card? No so much.

There we were. The frustrated clerk. The line growing ever longer behind me. The confused and frustrated manager who came to help the clerk. The line growing ever longer. Time ticking away where I needed to be at work doing work things. And the other clerk, yanking out a cash bill from her own wallet and saying, exasperation written all through her voice and body at the idiot who doesn't use cash or debit, "I'll buy it for my son."

I said "thank you." I apologized repeatedly to the people in front of me, the clerks and the manager. I didn't apologize to the people behind me in line because there were too damn many of them and that many people terrify me--what if one of them is the unreasonable, angry, violent sort?

I didn't want to say thank you. I wanted to say, "You should be able to cancel a transaction that won't go through, and if you don't know how to do it, get flippin' IT on the phone and make them work on a saturday just like the rest of us."

I didn't want to be forced to be grateful to a woman who only did it to get me out of there in the first place.

But I did, because that's social anxiety. Never stand up for yourself or what you believe in because there's always going to be someone more powerful than you, louder, angrier, more violent, more something, who will make you regret it.

So when I went grocery shopping after work to a place that would have taken my credit card for a gift card purchase and would have had that gift card, I totally forgot about it, because it was so late in the day.

And because it was so late in the day, and the birthday girl wasn't even going to be there until 10:30 so I'd just be leaving the card and gift and not actually seeing her anyway, and I was exhausted and frustrated and just so tired, I didn't even go to the whole shindig, just stayed home and slept through supper and then had to get up and eat supper anyway because of the stupid eating disorder where I can't skip meals anymore. No matter how tired I am.

The whole thing feels like such a colossal waste. I have to keep reminding myself that the whole reason I went to the post office in the first place, to mail my package, was actually successful and I did actually do what I set out to do, even though it took longer than it should.

Not Going Back

I've been thinking about the visit to L-- (the registered dietitian and counselor) and I don't think I'm going back.

I had been leaning toward giving her a second chance, a chance to prove that she can stretch her thinking to encompass my autism in the aspect of eating disorders, but I have changed my mind.

I don't owe her a second chance. What I do owe is myself: I owe myself the kind of protection I would give my child if I had one.

L-- didn't listen, but instead strung together a series of catch phrases I uttered, put them together out of context, and came up with a cookie cutter diagnosis that doesn't even fit. (I sincerely doubt you can be anorexic without knowing what you're doing, and until I started using the app to track my food intake, I had no clue I was restricting my calorie intake as much as I was. How can I then be anorexic? Isn't the base of it deliberate calorie restriction for a variety of reasons (body dysmorphia, searching for control in an uncontrollable world, etc?) You can't do intentional calorie restriction if you don't even know you're doing it).

She wants to teach me how to eat naturally. IE, she wants to teach me how to eat the way a neurotypical person does, despite being told that I've never eaten that way in my entire life. An autistic person is going to eat differently--digestive and food issues aren't part of the diagnosis for autism but they are so common that perhaps they should be.

But I'd give her a second chance for all that.

No, where it breaks is my new special interest: food. She wants to take something that gives me so much joy, fascination, entertainment, and happiness and turn it into something shameful, a part of the eating disorder, something to be overcome and ignored.

No way in hell I'm letting her do that to me. I haven't had this much sheer, unadulterated fun with anything for a very long time. To a neurotypical professional like herself, I'm sure it looks like the obsession that's part of an eating disorder.

Special interests certainly are obsessive, I'll grant that. But obsessions that come with mental illnesses like eating disorders don't bring peace and joy into your life; they make your life worse.

And, simply put, I didn't start this special interest until after the binge eating was under control and no longer a problem.

So now I simply have to tell her.

*sigh*. Something that would be so easy for a neurotypical person and is so difficult for me. One simple, terror-filled, dreaded phone call. I hate phone calls; making them or receiving them.

Eating Disorder and Meeting a Registered Dietician

So today I met with L---, a registered dietician and a counselor/therapist specializing in eating disorders.

Now I know I have binge/starve disorder. The evidence is clear. I've been using myfitnesspal app to keep myself from doing it; from eating too little during the week when I'm stressed out from the social and sensory issues at work and eating too much on the weekend to make up for it. Since the beginning of the year I've been successful at doing this.

Mostly I just wanted to know how much damage I did to myself, how long it will take to recover, what my metabolism is supposed to be and how much I'm supposed to eat (calorie-wise) without gaining or losing weight.

She thinks I have anorexia ... based apparently only on my current weight and my extreme disinclination to gain weight. She didn't really listen to my explanations of why my weight is there (yes, it's a little underweight, but only when I don't have any water in me--I weigh myself every morning after I pee just so I have a steady baseline, but in actuality I weigh more than that). Or my explanation of why I don't want to gain weight (because I did, without realizing it, and nearly went obese because of that, and it's damn hard to lose weight the right way, without destroying your body, and I don't want to do it. I didn't have to do it this time because of grief and the nausea that caused, but that's what led into the development of the eating disorder.)

So she isn't listening to me.

I don't know if I want to go back. I don't know if maybe I should go back and try to explain. I'm not very good at standing up for myself against authority. I don't like disapproval and I don't like judgement.

And even I, blind as I am to facial expressions, caught her eye roll when I mentioned the app. You'd think an app like that would be a useful tool for a dietician. She thinks she can train me to eat "naturally."

Again, not listening to me. I did try to explain that my natural eating pattern is to eat when I'm hungry and not eat when I'm not, but that stress and anxiety make me not hungry when I should be, so I have no idea when I'm actually supposed to eat ... and this is my natural eating pattern because it's what I've been doing all my life.

But she didn't hear that.

Any more than other people hear what I say. I'm getting way too used to being able to babble without anybody paying attention even if they're supposedly listening. Nobody can repeat back what I said anyway. I really should just stop talking. Or at least stop talking so much. Where's selective mutism when I need it? (That only shows up when I'm dealing with major big authority, like a cop or a judge. When it's severely not helpful to be nonverbal.)

But that's another issue.

What I don't know is how to explain to L--- that she's trying to take my crutch away from me without letting what's broken heal first. She said multiple times "how would I feel about learning to eat without using the app / depending on the app / etc". Basically, I feel like to her, entering all her food in and eating that way would be intolerable so she thinks it should be to everybody and that I'm doing it out of what, desperation?

But really, for me, it's fun. It's like a game. I'm enjoying finding out how many calories are in how much volume of food. I'm having fun searching out new recipes and new ways of making old favorites that are healthier and lower calorie (so I can eat more and not be hungry).

See, during the week I'm not hungry and I get aggravated because the app is telling me I still need to eat food to compensate for my calorie expenditure. That's because I'm stressed from work (the aspects of being autistic in a demanding sensory environment that offers no consideration for it). But during the weekend, I'm starving, because my brain is used to fueling up during those two days of not being at work and thinks that this time, I won't have food again come monday and we'd better get it in now.

Four months of eating the same amount of calories every day, weekdays and weekends, do not compensate for 40 years of starvation rations during the week and over-consumption of calories during the weekend. Not to my brain, anyway. I do hope it doesn't take another forty years of eating equally to retrain my hunger signals ... I'll be 80 before I can count on my normal hunger signals to eat properly!

That's why I went to L---. I wanted her to tell me how long it'll take before it'll be easier. Before I can let myself eat what I want to on the weekend without having the very bad feeling that I'm wanting way too much. The app shows me that what I want to eat on the weekend is usually far more than I should be having ... not if I want to keep it balanced with the weekday.

Anyway, food and keeping track of it and learning all about it and making new versions of old favorites and finding new favorites ... it's become one of my aspie special interests. I used to like collecting books and dvds, but that lost its pull sometime last year. So I had this blank area waiting for a special interest to develop, and there it is, food and everything to do with it. Poof, like magic.

I'm even thinking about taking an online nutrition course, one of those free-from-major-college-like-Harvard courses. Not sure I want to study regularly though. I'm having too much fun doing this helter-skelter, in whatever order I choose.

I guess it's hard for a non-aspie to understand that. It must seem like I am doing this app out of a desperate search for something to keep me from gaining weight (thus her conviction of anorexia). Maybe I didn't emphasis the "not losing weight" part enough, or maybe a neurotypical person just can't be led to understand the utter fascination and fun a special interest gives an autistic person.

I have another appointment next week. They're expensive, and I have to file the insurance myself. Perhaps I will give this one more try. Maybe I can explain, sort things out. Maybe I can just get her to tell me what I wanted to know in the first place and let all the other stuff alone.

Still stings that she wouldn't listen to me, though. She did, however, say that it would be interesting and complicated (in a good way) to work with me due to how my autism intersects with the eating disorder ... so maybe she's willing to try to listen, especially if I tell her she didn't? People don't usually react well to that, though.