Meltdowns

I’m sorry for my long absence. In the first little bit of the year, I’ve had an extremely rough time.
I’ve had to make one of the hardest decisions of my life. I cut off all contact with my dad. I can’t explain in a single blog post why that was necessary; I’d have to tell you my entire life story. After a lot of thought and analysis, I realized that I simply can’t be mentally and emotionally healthy while having a relationship with him. Since then, I’ve been mostly recovering and trying to keep up my schoolwork as well as I can. I’ve had little energy for anything else, thus the lack of activity here.

I started this post a few days after the first meltdown. I couldn’t finish it then, so I’m coming back to it now.


Meltdown 1

Boyfriend and I come home after a terrible visit with my dad. After being picked apart, disrespected, mocked, invalidated, and made to feel like a worthless mess, I stand up and demand to be taken home. My dad drives us home in silence while I internalize all of the messages I’ve received, both explicitly and implicitly, that I’m a useless and ungrateful failure.

We get home.

I sit down, in silence.

Then I start telling boyfriend what I think. I’m a failure. I’ll never amount to anything. I’m not really autistic, I’m just a lazy girl who doesn’t want to be responsible. I’m a liar and a fake, and I’ve been fooling us both all along. You deserve someone better, and you should leave me before I ruin your life. We’re going to be poor because I’m useless. None of the things I’m feeling are real.

He counters. Calmly, he uses logic to refute my statements. You couldn’t possibly fool me so completely – you’d have to be a genius at acting. We’re not going to be poor, because I can work and you’re going to college and you’re good at what you do. Besides, we don’t need a lot of money. You’re amazing and you’re exactly what I want and need. You really are autistic, and your thoughts and feelings are real. I can see it. There’s no way you could pretend to be autistic this well. You’re a good person, and we’re going to have a good and happy life.

I sob uncontrollably. Sobs that feel like being turned inside out.

He holds me with firm, even pressure. I begin to quiet. But I’m still very conflicted. I ask again. Am I a failure? Am I really autistic? He answers all the questions I can think of, with his calm and patient logic. He tells me how much he loves me and that he thinks I’m amazing.

I feel a bit lighter. I squeak and bounce. This feels good. I do it more. I squeak and bounce and flap around the house. Then, I sit in my office chair with my knees up to my chest and rock back and forth. “I’m a (my name) ball”, I say. Then I say it again, and again. I sing it in various tunes for a time, while rocking and twirling my hair. Boyfriend encourages my stimming.

I start to want to talk about what happened again. I want to process it. I try to ask boyfriend what he is thinking, but the words won’t come out. They’re in my head, neatly ordered in their sentence, but when I try to speak them, all that comes out is “think think”. I can’t make my voice do the inflection that indicates a question. I pull up a google doc, and write that I can’t talk and need to type instead. He asks if he should type as well, and I type that it’s okay if he just talks. We carry on a conversation like that for quite awhile, trying to make sense of what happened and trying to regain my grip over my own reality. It’s hard, and I have to fight for it, but I begin to be able to think rationally again.

Eventually, I just start talking. I don’t really think about it; it just happens. My boyfriend asked me something, and a word popped out of my mouth. I’m not totally okay yet, but I’m beginning to feel like me again. I keep stimming all night and end up calm enough to sleep.

 

Meltdown 2

Only days after the first meltdown, boyfriend and I are awoken at 8 in the morning by an unceremonious knock at the door. It’s Friday, and our day off. Boyfriend scrambles out of bed to get the door, and we find out that our landlord decided to install all new windows in our apartment that day. Yes, without sufficient notice and in the middle of winter.

At first I start panicking. I hyperventilate and pace around the apartment while waiting for the workers to arrive and begin the installation.

They arrive, and I run into the office to hide. I feel numb at this point, and sink into myself.

Then the noises start. I don’t know or care what they’re doing; all I’m aware of are the painful noises bursting into my head and invading my consciousness. The cold slowly creeps in, and soon our entire apartment is freezing.

They begin working on the office window. I run to the bedroom, only to find a gaping hole and searing bright light.

I try to go back to the living room, but it’s not safe either. It’s filled with strange men and pounding noises and vicious light. Our furniture is moved and the room is unfamiliar. There is no safe place.

I freeze in the hallway. I am a scared animal with nowhere to run.

My eyes dart everywhere, avoiding the light and looking for a place to hide. I feel the workers looking at me, and am dimly aware that they probably think I’m crazy. But I can’t look at them, or even acknowledge them.

I realize then that our kitchen has no windows.

I dart through the hostile living room to get to the kitchen. I might’ve nearly run into someone, but I’m not sure. I couldn’t process what was going on around me.

In the kitchen, I sit in a ball on the floor with my knees pulled tightly to my chest. I plug my ears, close my eyes, put my head down, and rock back and forth. After a little while, my boyfriend finds me and brings me a blanket (which I promptly put over my head) and ear plugs. He sits down with me. We stay like that for awhile, I don’t know how long.

Finally, the job is done and the workers are leaving. I’m cold, disoriented, angry, and sad. I begin to realize I’m hungry too. My boyfriend and I decide that the best thing to do was to get our environment back to normal, and then eat our normal breakfast. We did, and then we were mostly okay.

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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.

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.

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.