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.

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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.

Echolalia as Comfort

On a recent trip to the grocery store (which is often a stressful experience for me), this happened:

When we got to the checkout and started unloading our things onto the conveyor belt, I noticed that we forgot to put our lemon in its own little bag. There was a moment of inward shock as I realized this and worried about what I should do.

I said: “Oh, our lemon isn’t in a bag.”

Boyfriend said: “It’s not bagged.”

We figured there wouldn’t be much point in running back for a bag, so we just put the lemon on the conveyor belt as is. And then I proceeded to repeat “it’s not bagged” softly to myself. It’s not bagged. It’s not bagged. It’s not bagged. After doing that for a bit, I felt much calmer and was actually kind of enjoying myself. Boyfriend was having fun too, and was also occasionally saying “it’s not bagged” back to me. If the cashier noticed, he didn’t let on, and he certainly didn’t treat us differently because of it.

Later, when we got home, I would sometimes just start saying “it’s not bagged!” while bouncing and flapping. It ended up being one of the better grocery trips we’d had, and neither one of us was particularly drained afterwards.


Echolalia is the verbal repetition of words or phrases.

When I say something echolalic, my mind goes into a state of pleasant blankness and focuses just on the words. I feel light, airy, and far away from my worries. The situation feels simple and factual, and I’m able to be calm.

Usually, I repeat a word or phrase I’ve just heard (or said) that I like, either because of the way it sounds or how it sums up a situation or idea. In the case of “it’s not bagged”, it was both. Repeating a simple word or phrase is reassuring and comforting. In the above example, it helped me process something unexpected (the lack of lemon bag) in an already trying situation (the sensory overload of the grocery store), and turn it into something fun.

Even now, when I think “it’s not bagged” I get that pleasant blank feeling and remember the positive experience grocery shopping. It also reminds me of the wonderful feeling of acceptance when I realized that my boyfriend really didn’t mind me echolaling in public. He actually found it endearing and fun.

For me, echolalia also often overlaps verbal stimming (which I do a lot of, like really a lot). I first heard this adorable Korean song “I love Egg”  [watch the Korean version. Warning: flashing colors at the beginning of the animation] when I was about 16. In it, there’s a phrase that sounds to me like “ung pung pung” that I just love even though I don’t know what it means. Now, at 23, I’ll often say “ung pung pung” in the same cute voice as in the song when I’m happy or excited about something. Not only does it help me express the feeling, it also helps me experience the feeling. When I say it, I feel more immersed in my own happiness and excitement. And if I say it when I’m not particularly happy, I’ll actually feel a little wave of happiness.

So, in a way, both “it’s not bagged” and “ung pung pung” are about increasing comfort. The former comforted me in a stressful situation and now reminds me of that comfort, and the latter expresses and amplifies my comfort. Simply put, echolalia makes me feel better.