On meltdowns

Writing this because I’m fairly sure I’m in for one during the next month as I can’t change the situation enough to achieve stress homeostasis. You can tell I’m stressed because I honestly can’t think of a more cognitively accessible way to phrase this concept than “stress homeostasis,” and people who’ve seen me commenting elsewhere probably know that writing has become a lot harder for me than I’m used to in the past few weeks.

So, as the above paragraph may have tipped you off: Autistic people don’t grow out of meltdowns. Or, at least, I didn’t and most autistic adults I know haven’t, either. Meltdowns can be reduced in frequency and managed through mindfulness and stress-management and what have you, but we don’t just grow out of them.

Meltdowns are not something that autistic people can control. We can manage them through trying to avoid conditions that cause them, but once those conditions are met, a meltdown is happening. If an autistic person is extremely upset and trying to retreat from you, let them go. I retreat when I know I’m going to melt down because I don’t want to upset people and I don’t want to damage anything. Let me go. Let me melt down. It will be easier for both of us if you let me leave. Do not follow me. Do not try to reason me out of it. Do not try to bully me out of it. Input will make it worse. A meltdown is a supercell storm of emotion, and reasoning with it is like trying to reason with a tornado.

There seems to be this myth that meltdowns are wholly sensory in nature. I don’t know about other autistics, but for me, meltdowns are rarely only sensory. Sensory contributes by lowering my meltdown threshold, but almost always meltdown cause is either a case of many little frustrations and then a final-straw moment or a case of too much change in a period if time for me to deal with or some combination.

A big thing for allistics to remember is that a meltdown trigger is often not the same as a meltdown cause. The trigger is whatever set it off. The cause is just that: the conditions that made meltdown unavoidable. For me, once conditions result in a stress level past a certain point – I call it my “meltdown threshold,” a meltdown is almost unavoidable. The only way to avoid it is to immediately go into what I call “meltdown avoidance mode,” (a term I believe I’ve mentioned on this blog before but don’t have time or energy to dig up the post) where I stop all social commitments and responsibilities and just devote two or three days to de-stressing. Even then, it doesn’t always work. If I realize I’m getting stressed before my meltdown threshold is reached, simply cutting back and making sure to follow my routine more is often enough to avoid the meltdown.

As a case in point: One time, a meltdown trigger was that the road to the theater was flooded so we couldn’t go through with the plan of going to see a movie, but that wasn’t the actual cause. The actual cause was that my week had been full of unannounced changes like getting called out of school for a doctor’s appointment without being told about it ahead of time and a pep rally in the gym I wasn’t warned about so on and so forth, plus a worse-than-normal bullying week. Frankly, even if we’d gone to the movie, the noise in the theater would’ve induced the meltdown anyway. I was past meltdown threshold at that point and any trigger would set me off.

Now I’m at the point when I can recognize I’m approaching or past my meltdown threshold and take steps to de-stress. Meltdown avoidance was a difficult, but very necessary, skill to learn. I wasn’t able to learn it until I was living on my own, though, because family was less-than-supportive on that front. At my worst, I had meltdowns almost daily. Now, I’m generally a few months between meltdowns. Meltdown avoidance as a skill has two parts: stress recognition and de-stressing. Stress recognition is what it sounds like: Knowing your own emotional signs that you’re getting stressed. De-stressing is also what it sounds like: Knowing what things lower your stress level and doing them.

I might have a meltdown in the next month just due to unavoidable stress and a lot going on. I can already feel myself getting close to it – the near-constant ache on the sides of my skull and in my stomach and behind my eyes that signals I’m way too stressed for my own good. I unfortunately can’t change the situation without life-altering consequences that I don’t want to face, so I just have to take myself away whenever my stress spikes so that if I do melt down, I don’t do it in a place where I’d upset others or damage things.

Procrastination and anxiety

If you’re wondering why I’ve been quiet, it’s this: I have an important exam coming up in a month. I am extremely stressed out about this. So any spare minute that I’ve been calm enough to study, I’ve been studying, and when I haven’t been calm enough, I’ve been playing video games to try to calm down enough to study.

So I figured I’d post about procrastination. Because it’s relevant. And because something on Tumblr gave me an aha moment.

Procrastination is not and has never been a matter of laziness for me. I can and am willing to do the work. Usually, I like the work and find it fun. I have a strong work ethic. I have worked till 3 AM on experiments, then gotten up and arrived at work on time the next morning. Hard work is not alien to me.

It’s not a matter of being unwilling to do the work.

It’s a matter of anxiety.

I fear failure. Probably more than anything else in the world. I fear being a failure. I fear fucking up. I fear the consequences of fucking up. Even contemplating that I might fail the exam brings tears to my eyes and ties my stomach up in knots so tight there’s no room for my breakfast. Failure terrifies me.

Because, to me, failing a thing is being a failure. As a person. If I fail a thing, I am a failure, and therefore I am worth nothing.

I literally think that if I fail a thing, my life will fall apart and everyone will hate and abandon me. That’s a lot of pressure I put on myself. Because to me, it’s not just “I take a few make-up courses and try again next year,” if I fail, it’s my life is over because I will be a failure.

Do you understand?

I don’t think you do.

If you did, you wouldn’t tell me I shouldn’t stress. Maybe that I should be easier on myself, or that my assumptions about the consequences of things are wrong, but not that I shouldn’t stress. To my brain, success or failure is life and death. I can’t not be terrified about this.

And that is why I procrastinate. Because prepping for the test is dancing on the cliff’s edge, and sometimes I just can’t stare into the yawning chasm and think about how to avoid falling anymore.

Socially-acceptable cursing and how not knowing how to curse started me toward self-diagnosis

Post inspired by this post at suburp. So, when I was a kid, I had a bit of a cursing problem.

And by a bit, I mean a lot.

I’ve mentioned before, how I would do outrageous things without realizing they were outrageous? Yeah. Cursing out my third grade teacher when I was seven was one of those things. Er, probably more like several hundred. I cursed a lot.

I came by it honestly: Most of my extended family is military, and I spent all of my early childhood on military bases. In Canada, military people curse a lot. Like, it’s not uncommon when they’re hanging out for every third word or so to be a swear word. My parents were (are) both fairly free with the curse words when upset or angry. I modeled that.

On bases, in kindergarden and first grade, it wasn’t a big deal. Most of the kids, like me, grew up in houses where adults cursed a lot. So they cursed a lot. Teachers chided, but took it in stride. Second grade wasn’t a big deal because I had a great teacher and was rarely upset.

Third grade, though. Third grade was a disaster (with all my seven-year-old wit, I was referring to it as “turd grade” by the end of September, and that pretty much sums up my thoughts of that year even now). I was young for my grade (second-youngest in the class, youngest by over two months when you considered prematurity). I was bored silly by the work. I was so small for the grade, the desks dwarfed me and they had to get what the other kids called a “baby desk” from a kindergarden class room for me, since I was too small to be able to do work while “sitting properly” in the desk. The classroom was sensory hell. I didn’t know any of the other kids, and they didn’t like this new weirdo with her books and clumsiness and weird posture and stutter and vocal affectations.  So I had meltdowns. A lot. And I cursed. A lot.

This was a problem.

So parents and teachers worked with me. It’s okay to be angry, they said, but that’s no excuse for cursing. I should never curse, even if I was angry. It was inappropriate.

Of course, I’m very black and white. So, once I internalized that lesson, i stopped cursing. Completely. But expressing anger in normal words without cursing didn’t get people to pay attention. I needed a way to signal that I was angry. So I turned to my friend, the dictionary, and started making scripts with extremely descriptive language. And, because I was using dictionary language, not normal speaking language, the resulting scripts were, to put it bluntly, arcane. Stuff like, “Verily, I yearn to defenestrate that work sheet! Its uselessness is of brobdingnagian proportions!”

Which didn’t win me any friends at all. My parents thought it was amusing, evidence of my “dry wit” and “creativity” and “unusual perspective.” My teachers, I think, were made to feel inadequate when a 7-year-old who looked more like 5 was using words they didn’t understand. They got angry and treated me poorly as a result. My classmates were more convinced than ever that I was a weirdo.

All that said, it wasn’t really a noticeable problem until I hit university (before then, I was too much of a social pariah for anyone actually comment on it). One of my friends, about six months after I started uni, asked me, “I noticed – you never curse. Like, ever. Are you religious or something?”

Cue an awkward conversation where I explained that it was never okay to curse, and she talked me around to realize that I set a double-standard for myself, where I believed it was never okay for me to curse, but other people could curse as much as they wanted to. And that I had no understanding of when it was appropriate vs inappropriate for anyone to curse, but I assumed other people had some information I didn’t have and assumed that if they were cursing, it was okay for them to, but not okay for me to. After all, my parents and teachers said there was never an excuse for me to curse.

“This is gonna be weird, but, are you sure you’re not autistic?” said another friend of mine, who was himself diagnosed autistic. It wasn’t the first time he asked. It wouldn’t be the last. “Cuz I had that problem in Grade 10, for the same reason, but my teacher taught me when it’s okay. Seriously, you seem more autistic the more I talk to you.”

At the time, I brushed it off. But as my friends taught me when it was okay to curse and when it wasn’t – and also taught me some more useful scripts for expression of frustration than the ones I had been using – it stuck with me. Are you sure you’re not autistic?

I remembered the aha! feeling I got on reading Asperger’s syndrome diagnostic criteria at 15.

Are you sure you’re not autistic?

I remembered people on forums asking me the same question.

Are you sure you’re not autistic?

I realized I felt most comfortable and relaxed among my autistic friends. That I felt kinship with them. Like their struggles were mine in some way.

Are you sure you’re not autistic?

Eventually, I had to answer “No.”

“It’s just asthma.”

Pet peeve: “It’s just asthma.”

Even though it’s a thing I say sometimes (usually to reassure people hovering over me in hopes it’ll get them to stop hovering and/or to reassure people giving me the stink eye that my very loud and scary-sounding cough isn’t contagious), I hate the sentiment when it comes from nonasthmatics. Particularly in the form of horizontal ableism from other chronic illness folk and/or from people in positions of authority.

Because the unspoken other half to that statement is typically, “… it’s not like you have a real chronic illness.”

And internalizing that sentiment has led me to do some very foolish things, like finish an exam before I went to the ER, or like finishing a very strenuous martial arts test with my lung function in the red, like not getting a flu shot when offered (long story), or like staying home from the ER because even though my PF was bottoming out at 180 when my PB is 680, it was “just asthma” and it wasn’t like it could kill me (uh, yeah, it could. Don’t do that, by the way. It’s a bad idea).

I am chronically ill. Asthma is a real chronic illness. And anyone who disagrees with me on that can trade my body for theirs so they can recover from the pulled muscles and bruised sternum and burst blood vessels I gave myself in a flare-up last week for me.

That is all.

What happens when you get two people who are bad at phone convos on the phone with each other.

Here’s the tail end of an actual phone conversation I had today, with a coworker who likewise hates talking on the phone, presented without comment.

Him: So we’ll do that, and on Monday you can finish that up, then?

Me: Yep.

*awkward silence*

Him: So…

Me: Yes?

*awkward silence*

Him: … is there anything else?

Me: … No? No, I don’t think so.

*awkward silence*

Him: Well, if there’s nothing else, I’m going to hang up now.

Me: Okay.

*awkward silence*

Him: Right. Hanging up now.

Me: Mm-hmm.

*awkward silence*

Him: Bye.

Me: Oh, okay. Bye.

*he hangs up*

Why you should listen to people with disabilities over our parents

A lot of people seem to falsely equate Augmentative and Alternative Communication (ACC) with parents speaking for their kids. I’m going to discuss the difference between the two, why AAC is good, and why parents speaking for their kids is bad, followed by a bit about why “nothing about us without us” is a thing in disability rights.

AAC is an umbrella term for a variety of communication methods that exist to help people who cannot communicate well enough with speech. Stephen Hawking’s computer is a form of AAC. So is sign language. Contrary to some misconceptions, AAC does not delay speech development in kids, and actually might help speed it up.

Some who need AAC are able to independently develop a form of it – consider the various types of “home sign” that Deaf children often develop with their families when they don’t have access to schooling in a formal sign language. On a more personal note, when I was a kid, I took to carrying a notepad and pen for when my stutter became impossible to communicate through, and when I got older, I often would communicate emotional things to my parents via letter or email because I knew if I spoke to them in person, I would be unable to adequately communicate with them about it. Others who need AAC are unable to independently develop their own form of AAC, and are left without the ability to communicate complex thoughts and feelings until someone teaches them one or more formalized AAC method(s). While those learning AAC may require assistance from a parent, paraprofessional, or therapist to communicate, the eventual goal is for the person in question to be able to communicate independently. AAC, thus, exists as a tool to help those with speech and language challenges to express their own thoughts, wants, needs, and desires without interference from others. It exists to enable them to use their own voices. Furthermore, while the AAC user may need help to express their thoughts, the thoughts expressed are theirs, not what someone else thinks their thoughts might be.

By contrast, when parents speak for their kids, that is the parent using hir judgement to guess at what their kid might want. The parent might, if they are very empathic and know their kid quite well and presume competence, get very close to what their kid wants. But they might not. In many cases, even well-meaning parents who try to speak for their children with speech and language challenges presume their children to be incompetent due to ignorance. Even when the parents understand their kids’ wants, needs and thoughts adequately, bystanders, classmates and strangers are unable to attain this same level of understanding, and the disabled person is thus left in an infantilized state of forced dependence on their parents – and that is the best case scenario, when the parents genuinely understand their kid and want to help hir be understood. Worst case scenario, the parents are actually completely misunderstanding what their child is trying to communicate, and leaving their child’s needs and wants unmet. Given that people with normal communication abilities very commonly misjudge each others’ wants and needs, odds are far more likely that, when faced with a person who communicates atypically, an ordinary person will misjudge the atypical communicator’s needs and wants severely.

Furthermore, allowing parents to speak for their children is problematic as it presumes that disabled people are incompetent to do so themselves. Every NT I’ve ever spoken to can remember a time when they were a child and their parents spoke for them in something and got it wrong. They remember the frustration and the embarrassment of others talking over them and the humiliation of being chided for trying to correct someone who was speaking for your wants and getting it wrong. I ask NT people who’ve had that experience: Consider what it would feel like at 16. Or 26. Or 36. Or 76. Consider how upsetting it would be to grow up where those around you spoke for you rather than asking you what you wanted. Where they made assumptions about what you wanted rather than asking, and where your actual thoughts and feelings were doubted to even exist, when they were considered at all.

That’s how people with cognitive and developmental disabilities are treated all the time.

“Nothing about us without us” is a rallying cry of the cognitive and developmental disability communities for a reason. And that reason is this: We are excluded. When you presume to speak for us, you exclude us. We are presumed incompetent. When you assume we need you to communicate for us, you assume us incompetent. We are neglected. When you don’t bother to find out what we actually need, you neglect us.

The truth is that we are competent. Don’t ask our parents to speak for us. Ask us. Don’t push our voices aside and speak for us. We can speak for ourselves.