Can and Can’t

Since I’ve discovered that I’m autistic, I’ve been grappling with identifying and accepting my limits. One of the hardest things to figure out is if I really can or can’t do something. I have built up years of pushing myself to do things while ignoring the signs of detrimental effects. People had so many expectations of me, and I basically did everything I could to live up to them, while paying an extremely high price. There were so many things like this that I actually wasn’t even aware of the more subtle effects; I had never experienced them not being there. I felt, and was told, that the things I was struggling with were just normal life, and that there was something wrong with me for being unable to happily do them like everybody else. I’ve felt that way since I first went to school at age five and literally couldn’t cope.

I’ve had to deal with this sort of dilemma more than usual lately because of the holidays. There are always more expectations and invitations this time of year than I could deal with even if I wanted to. And I don’t. But that doesn’t prevent me from feeling like a disappointment every time I decline. Because of the years of conditioning, part of me always feels like I should say yes – especially to the things that “aren’t that bad”. It’s easy to say no to a party with 30 people; I’ll be a wreck for at least the next week afterwards. But what about the smaller things that cause some stress but are (in society’s/the other person’s eyes) not a big deal? Where do I draw the line between can and can’t?

Literal thinking can also make it harder to discern and communicate can and can’t. If I say I can’t do something, then it must mean that I cannot physically do the thing (like I can’t morph myself into a cat at will). So, I shouldn’t say I can’t do something if in reality I can make myself do it. This is what my brain tells me. I feel like if there’s any way I can possibly do the thing, then I shouldn’t say I can’t. And if I do, then I’m a bad, selfish, weak, overly self-indulgent person.

But of course, that sort of thinking just leads to more pushing and then more berating myself when the thing ends up being too much for me.

I’ve been finding that it’s helpful to look at it in terms of cost. If something costs more than is reasonable, then it’s okay to say I can’t do it – simple as that.

Let me give you a visual:

cost-of-doing-something

I’ll elaborate on using some examples from my own life. It is important to remember that the placement of things on the scale fluctuate due to other variables (like environment, stress levels, and mood).

  • Fun things like reading, gaming, and relaxing at home with my boyfriend have no cost at all and would be at 1. These are actually rejuvenating.
  • Chores around the house have some cost, usually ranging between 2 and 4 depending on other variables.
  • Grocery shopping can sometimes be as low as 3, while other times it can go up to a 7; it depends on how I’m doing that day.
  • Spontaneously changing plans can be quite costly, depending on the plans and other variables. Something small like deciding to go out on Sunday instead of Saturday because of rain is usually a 4 or 5. Sudden “let’s go out to dinner tonight!” invites are at least a 7. Unannounced visitors showing up is an instant 9 – if that happens, you are looking at a full-blown meltdown.
  • Family gatherings with a lot of people are always at least a 6 and can go all the way up to a 9. Said family is quite dysfunctional (which you’ll see in future posts), so a lot of the cost has to do with that.

I plan to use my scale the next time I wonder whether or not I can (healthily and reasonably) do something.


If it sounds like I’ve got all of this under control, well, I don’t. What I think and how I feel don’t yet align, and the tendency to just push myself to do something “because I should” is still very strong. And when I am able to honestly say that I can’t do something because the cost is too high, I still feel bad about it and wonder if I just made up the “can’t” in the first place in order to get my way. I’m writing this post partially to convince myself that I don’t just make things up, and that I really can’t do some things that others consider normal.

Still, intellectually I know that constant self-sacrifice is not healthy. I’ve done it, and the times in my life that I sacrificed the most correspond with the bleakest periods of depression. No one’s expectations or wishes should come at the expense of another’s mental health. Also, no individual should always be the one to bend in a relationship. A healthy relationship is one in which both people accommodate each other; otherwise, it’s abuse. I was raised to think that I was bad if I didn’t acquiesce to the other person’s requests. I was supposed to be compliant, agreeable, and selfless at all costs. And because of the guilt I was conditioned to have, it was almost impossible to say no. I was taken advantage of constantly, while still being told that I wasn’t doing enough. Even if I forced myself to go to all of the holiday events, I’d still be told “you didn’t talk much”, or “you should spend more time with so-and-so”, or “why can’t you be more cheerful?” My best wasn’t good enough. I could give everything I had and still be a disappointment. I’m slowly learning that that doesn’t mean I’m defective; it means the expectations were unreasonable.

No amount of lists or scales can possibly undo years of pushing myself and paying the price, but they do help.This post was hard for me to write; there’s obviously still a lot of complicated and tumultuous emotions tangled up in all of this. The words felt wrong. Every asserted truth was followed by guilt and contradictions. I’m tentatively grasping the right to take care of myself, but it’s tenuous. Thankfully, my boyfriend, with his clear and logical approach, is a constant source of validation and reassurance. I think I can do it.

Advertisements

On Food, Sensory Issues, and Social Pressure

If one really thinks about it, food is a pretty intense multi-sensory experience. When you eat, you’re experiencing and responding to a variety of tastes, smells, textures, consistencies, and temperatures. You’re also looking at it, and experiencing it’s color, shape, and visual texture. Then, you’re interacting with the food; touching it, scooping it, or cutting it, and then chewing it. And afterwards, there’s the feeling of having eaten; the body feels different when it’s full. That’s a lot of sensory input all packed into one experience. For someone who processes their senses differently, foods that are considered normal or even delicious can be unbearable.

These are some of the major things that I simply cannot eat, and why. Hopefully this list will shed some light on what it’s like to have food-related sensory issues.

  • Beef. Especially ground beef or steak. It’s the texture here that’s the problem; ground beef is crumbly and steak is chewy. Despite really trying to enjoy steak many times (my parents made a fuss over it), I will gag if I attempt to eat it. I also can’t proficiently use a knife and fork to cut food, so things like steak are a struggle to deal with.

  • Potatoes. This includes french fries, mashed, baked – any potato. This one is again texture-based. Potatoes have a grainy, mushy texture that I just can’t stand. They also make me feel too heavy after eating them.

  • Corn. With this one, it’s the smell and the taste. Both seem sickly sweet to me. If someone even opens a can of corn in the same room as me, I will have to bolt before I get nauseous. So, considering the above entries as well, shepherd’s pie is a nightmare in a casserole dish to me.

  • Certain cooked vegetables. Specifically: carrots, peas, broccoli, green beans, and cauliflower. All of these have a common mushy-grainy texture that is very repulsive to me. I also really dislike the tastes of these. I could not make myself eat any of these.

  • Cake. Particularly the North-American, frosting covered kind. It’s just way too sweet, and sweet things make me sick.

  • Very rich foods. This includes butter, heavy cream, non-skim milk, pudding, non-light cream cheese, and probably others that I’m forgetting. But you get the picture. I’ve a very low tolerance for fat content in my food, and all of these will make me feel sick and heavy. Oddly enough, I love cheese.

  • Peanut butter and jelly sandwiches. I can’t stand these; I can’t even bite one without cringing. They’re too squishy and mushy, and the consistencies clash. They’re also weirdly sweet and moist. Yeah, I just can’t.

  • Carbonated drinks. I simply can’t handle the bubbles. They make me feel sick to my stomach. I could not get through a can of Coke without feeling very, very ill. Even sparkling water is too much.


Social Pressures

While the sensory issues surrounding food were bothersome, confusing, and sometimes downright appalling, the social pressures were worse.

As you can see from the above list, many of the foods I can’t handle are common North-American fare. In my childhood, I was considered a notoriously picky eater, and this was a problem. This led me to make myself eat certain things that I could tolerate with some effort but really didn’t enjoy (like ground beef and potatoes); it was a form of passing. Eating those foods meant I was behaving myself and not being “difficult”. I learned that my likes and dislikes were wrong, and that if a family member says a food is good, then it is. With some foods though, no amount of self-control could make me eat them. I remember once being told that I had to sit at the table after dinner until I ate my broccoli. I’m not sure how long I sat there, but eventually bedtime came and I still hadn’t even touched the broccoli. My parents let the broccoli thing go after that.

I want to say here that I do realize that parents are often concerned about their child’s nutrition. I think for my Mom, that was the main issue. And she did help me find things, like fruit and chicken, that are nutritious and enjoyable for me. For my Dad, however, it was more than that. He made me feel that my food preferences were a problem and that I was inconveniencing others. For example, he used to get upset with me for not liking birthday cake. It was a celebration, and I had to participate in eating the cake or I was ruining other people’s fun. How other people’s enjoyment of an event was dependant on whether or not I ate cake is completely beyond me. And birthday cake is not nutritious.

When I became a teenager, I decided I wasn’t going to force myself to eat certain foods. If it was a struggle just to get something down, I refused to eat it. Beef, potatoes, milk, and butter went out the window (not literally, though that might’ve been fun). This caused my Dad to tell me that “One of these days you’re going to have to start eating normal food”. Of course, “normal” was the aforementioned foods that he really liked and I didn’t. There are other “normal” foods that I like, but never got the chance to try because the menu was largely determined by my Dad’s preferences. So during that time I basically had microwaveable pasta or bagels for dinner. If there was salad, I’d eat that. I wasn’t allowed to get in anyone’s way and make something different for myself. At family gatherings, I was thankfully allowed to bring my own food (usually just more microwave dinners), but I was then made to feel bad about it. I had to profusely apologize to my grandmother (who often did the cooking for family events), and I felt like I was bothersome and pushing my luck. From my perspective, my Dad and relatives had an air of “you’re getting more accommodations that you deserve”. Sometimes, even what I chose would be criticized for not being special enough for the event. Again, apparently me eating a bagel at Thanksgiving was somehow taking away from other people’s turkey.

I also had social pressures from peers surrounding food. Elementary school classmates would tease me for not liking cake, ketchup, french fries, or candy. Even in my 20s, I’ve been ridiculed for not liking fries. When I was in art school (more on that in another post), an acquaintance had fries and offered me one. I declined, saying “No thanks, I don’t like fries”. Then, no fewer than five people who were in the room (some of whom I’d barely spoken to) turned to me and exclaimed things like “What!? You don’t like fries?” and “Who doesn’t like fries?” and “What’s wrong with you?”. No, I don’t like fries, and who the fuck even cares?

Over my food preferences, I’ve been called weird, strange, unnatural, wrong, difficult, attention-seeking, a problem, and “just trying to be different”.

 

I’m Not Picky

Yep, that’s right, I’m not actually picky. The number of foods I like far outnumbers the ones I dislike, and my boyfriend and I never bump up against any pickiness.

Since I’ve been living independently with my boyfriend, I’ve discovered that there are actually quite a lot of things I like. I love most Asian foods, including curry, sushi, noodle dishes, soups, chicken dishes, and fried rice. I also like fish (as long as it’s not battered), chicken, tofu, shrimp, almond milk, avocados, pasta, and most Mexican dishes. On the vegetable front, I like bell peppers, spinach, cabbage, cooked onions, zucchini, butternut squash, tomatoes, and bean sprouts. I’ve also discovered that I like the light or low-fat versions of things that I thought I disliked, like peanut butter and sour cream. I just never had the chance to try many of these things growing up. I’ve found that if I stick to things that are spicy, citrusy, crispy, crunchy, springy, light, and are integrated dishes, there are many things I like. A lot of the foods I like have directly opposing characteristics to the foods I dislike (compare mushy steamed carrots on the side to crispy red peppers sauteed in an Asian noodle dish). That’s not a coincidence.

Cooking my own food with my boyfriend has really helped too. That way, we can control exactly what’s in it. And cooking is surprisingly fun. We’ve found many really good and really easy recipes, and we have a Pinterest board displaying them all visually (don’t worry, we haven’t got any “cauliflower pizza crust”, or “pasta made with zucchini strips” – just yummy, easy to make things). We also plan out all of our dinners for the week on Monday, which has the double benefit of keeping us calm, and avoiding two hour long “what do you want for dinner?” conversations. We’ve been told we’re rigid about food, but the way we do it really works for us. Now, I enjoy food much more than ever, I don’t feel like my preferences are wrong or bothersome, and I actually have a much healthier diet.

Basically, food is a very personal thing, and individual preferences should be respected. No one should be made to feel inadequate, defective, or problematic simply for not being able or willing to eat certain foods. If it’s a sensory issue, chances are the person can’t just “learn to like it”.

Holiday Reform

Since about the middle of October, I’ve been getting increasingly anxious about the approaching holiday season. Like jittery, physically ill anxious. For the past few years I’ve been trying desperately to like Christmas (or to at least appear to) and berating myself harshly when I fail. But this year, which will be the first holiday season since I discovered my autism, I’ve been able to accept that I don’t like it. I just don’t. It’s a stressful, overly social, event with sensory attacks waiting around every corner. Plus, I’m an atheist. And going into autumn, I felt the tremors of an incomprehensible avalanche of stress hurtling towards me.

So I made a list.

I listed all of the things I find stressful about the holiday, by category. You can take a look at it here: Why is Christmas Stressful? (the rest of this post will make more sense if you do). Just making the list made me feel a lot better and more in control of the situation, which is definitely a good thing. I later went over the list with my boyfriend and then my Mom, and we came up with some practical solutions to make this Christmas not so bad. I’ll be straight up here: if I had my way, I’d simply forget about Christmas and never celebrate it again. But, my boyfriend actually does want to celebrate it (thankfully in a quiet, laid-back, autism-friendly way), and I’m going to compromise with him.

Here are the solutions we came up with:

  • We’re going to only have decorations up for one week, and we are going to keep them minimal and in one room only. This way, the decor situation will be contained and won’t overload me as much.

  • We’re going to eat the same food in the same amounts as we usually do. This will help keep things more routine, and avoid me feeling sick because of sweet foods or just too much food in general.

  • My boyfriend and I aren’t getting surprise gifts for each other; instead, we’re going to pick out something for both of us together.

  • We’re not going to wrap said something, in order to avoid the sensory issues giftwrap causes.

  • We’re also not going to leave wrapping, boxes, bags, or any other crap lying around the house. I need my space to be neat, and taking the time to put things away is worth it for me.

  • We’re getting gift cards or just Christmas cards for other people. This will help in both limiting the time spent in public, and in reducing the stress of picking out gifts.

  • Social events will be limited in frequency and duration. They will also be planned with rest periods in between them.

  • On Christmas itself, we’re going to mostly stick to our usual routine.

  • We’re not doing the whole “week of festivities” thing. It’s mostly going to be a normal week.

  • New Year’s will be acknowledged, but we’re not doing anything to celebrate.


So, overall, this thing is going to be much less of a big deal than it usually is. Keeping things routine and sense-comfortable is very important to me, as is having lots of time at home. I don’t ever expect myself to be all “yay Christmas!”, and it’s actually liberating to not have that expectation anymore. Still, it would be nice to not dread December so much, and to make it through without a meltdown or a lot of stress. I’m already feeling better than I usually do at this time of year, so that’s a good sign. Just knowing that something is being done, and that those who matter are supporting me and not thinking I’m a monster, is a big relief.

I know I can’t be the only autistic person who finds the holidays to be a stressful ordeal. So I hope my solutions (or just thinking about it in general), are helpful to others in some way.

On Diagnosis

One of the first things my Mom asked me when I told her about my autism discovery was: “Why do you want to get diagnosed?”

Huh.

At that point, I hadn’t even considered not getting diagnosed an option. Perhaps it was a bout of black and white thinking, but I thought that if there was something about me that could be diagnosed, then it should be. Her question challenged me to think about diagnosis in a more meaningful way, and I’m glad she asked. She encouraged me to think of diagnosis as a choice rather than a requirement, and at the same time validated my self-diagnosis. Well done, Mom.

Even after that, though, I decided that I do want an official diagnosis. Still, I was at least able to feel that my self-diagnosis was worth something, which gave me time. I clearly needed a lot of time, considering that I first discovered my autism in January and I still don’t have a diagnosis. Since then, I’ve come up with quite a few reasons why a diagnosis would be right for me:

 

Validation

While I’m generally very confident in my autisticness, I sometimes have low points of insecurity and emotional desperation in which I wonder if I’ve simply fabricated this whole thing. I think that maybe I am indeed just a lazy, selfish girl who doesn’t try hard enough and should just learn to tough it out. And I’m just making excuses to avoid living a normal, productive life. Because I’m really an irresponsible person. Since I’ve been told as much in various ways throughout my life, that’s a message that has stuck with me. Having a diagnosis would be hard proof that I could use in those moments to drive that destructive voice away. And hopefully rob the thing of some of its power so it can’t come back as strongly the next time. I think in part, it’s about aligning my self-image with my actual self.

 

Accommodations

There are some things I’d want, especially when comes to employment, that might be hard to get without a diagnosis. For example, I want to be able to work from home. I couldn’t handle actually going to work everyday, and I wouldn’t be very productive if I tried. But at home, I’m a very fast and productive worker (and I have experience freelancing and going to school online to back this up). While I know that every autistic person doesn’t need this particular accommodation, I think my needing it would make a lot more sense to an employer if I had a diagnosis.

 

Not Needing A Disclaimer

I want to be able to say “I’m autistic” without also having to add in “well, I’m self-diagnosed, but I’ve done a lot of research, and poured over the diagnostic criteria, and everything fits so well, and the people who know me best agree”. While I know how thorough I’ve been in my self-diagnosis (seriously, we’re looking at hundreds of hours of research and analysis here), others do not. I’d like to stop feeling like I have to convince people.

 

Professional Analysis

Since I don’t know exactly how the process will go, this is more of a hopeful reason. I’d like whoever diagnoses me to give their own observations and analysis of me. A cognitive profile of some sort would be great; I just find that sort of thing so interesting, and I think more knowledge is always good. Plus, for most of my life I’ve wandered around really not knowing how I present to others, and a diagnostic situation seems like a good place to ask and get honest feedback.

 

But that’s not all to say that I don’t respect self-diagnosis. Far from it. In these past 11 months since I diagnosed myself, I haven’t been walking around thinking that I “might be” autistic; I’ve been walking around thinking that I am autistic. In fact, it’s become a big part of my identity. Sometimes, I even forget that I’m not professionally diagnosed. So, I fully respect those who feel that getting a diagnosis is not right for them, and I don’t consider the self-diagnosed to be “fake autistics”. I think if someone gets really into learning about autism, analyzes themselves critically, and really sees themselves in the stories of other autistic people, then they’re probably autistic. And since there is no standard chemical test or brain scan for autism, that’s about all the confidence we can have right now anyways. Everyone should simply do what they decide is best for them.

My boyfriend was actually at first going to remain self-diagnosed, even though I had decided I wanted a professional one. Fortunately, he doesn’t suffer from the same self-doubt I do. He just looked at it logically, and everything pointed quite clearly to him being autistic; that was enough. He recently changed his mind, though. Now, he’s found that there are some accommodations he’d like at work, and wants a diagnosis to help him ask for them.

I’ve been thinking a lot about diagnosis lately, and I’ve began more intensely working on getting one. A large part of that work has been meticulously going over the diagnostic criteria and supporting the things that fit with real world examples – I’ve a few pages of notes on it now. I want everything written down in case I freeze up and can’t speak well in the interview. An even bigger part of this work has been simply mentally preparing myself for actually making contact with a professional and getting this officially started.

Still, I’m scared. I’m scared of the logistics of getting diagnosed. Of making contact and scheduling an interview and getting on the bus and going to a new place and meeting new people and talking about myself. I’m also scared, to a degree, that I’ll be told I’m not autistic and then I’ll have to face that it really was all in my head.

But, I’m getting braver. This thing is starting to reach some sort of critical mass where the drive to have a diagnosis is bigger than the anxiety surrounding it. I think I’ll be able to do it soon.