Again and again and again.

TW: murder, suicide, murder-suicide, ableism, and victim-blaming

It’s happened again.

Another parent has decided to murder their autistic kid.

RIP Robbie. You did not deserve what your mother did to you.

The article is fucking disgusting, too. All of the “distraught mother” tropes and all the painting the victim as the villain and his murderer as the victim.

And I’m so damn tired that every single time some parent decides that disabled kids aren’t worthy of life, we have to have a huge fucking fight over whether or not we’re people and deserve to have our murders treated as such.

I just wish that just once allistic people would STFU and let autistic people grieve for a murdered one of our own in peace without having to fight over whether or not we’re people and whether or not our murders actually count as murder-murder.

See also: Cue allistic parents whining, “But services!” as if that excuses anything in 3… 2… 1…

Stress and executive function

One thing that is a major challenge for me, especially now that I’m (mostly) managing my own schedules is how stress makes my executive function skills evaporate.

In the past week, I’ve: missed 3 important appointments, 1 party I promised to attend, and 3 meetings.

I forgot to register for summer session until the secretary for my program emailed me and asked if I was dropping out.

I am unable to focus on studying for more than 5 minutes except when I focus so strongly I forget to eat anything all day until 4PM.

I’ve missed every class of a seminar course this month.

I double-booked a party with my martial arts responsibilities, when I’ve been attending martial arts on the same time and day for the past five years. How do you forget something you’ve attended at that time and day for five years?!

I’ve forgotten to get milk for three days, and forgotten that we’re out of milk for 3 days, and am thus starting a dry cereal bowl collection in the fridge because it hasn’t occurred to me once to put the damn cereal back in the damn box.

And I put my damn shirt on inside-out this morning.

I’m so fucking scattered that I need my partner to help me stay on task when I’m cooking lest I burn the place down by doing something foolish like sticking a jar of oil on a hot burner. Which has been done by me before when I was this stressed.

My shit, it is not together.

This has been a case study of what stress can do to a person’s executive function.

On Functioning Labels

I had a post go wild on Tumblr, so I figured I’d cross-post it here since people seem to like it there. Because the point is important and apparently people think I made it clearly. But please do go read Alyssa’s post first since I think she did a better job than me.

Alyssa of Yes, That Too has already done this but I want to just to add an extra narrative backing up her point about Hillary and Rose.

Here’s a tale of two women:

Claire is in her mid-20s and has only lived on her own for eight months of her life, during which time she nearly set fire to her apartment on three different occasions. She has times where she is unable to speak, and even when speaking, she is unable to reliably modulate volume, tone and language to her audience. When stressed, she often resorts to AAC to make communication easier. She typically makes eye contact only under duress, and often doesn’t look at people she’s talking to at all. She has difficulty understanding nonverbal communication and is unable to reliably tell the difference between lying, sarcasm, and honesty. Claire dresses entirely in soft cotton clothing with some stretch to it – her outfit of gym pants, T-shirt, sneakers or boots in the winter with a sweater is worn so often it’s jokingly referred to as her “uniform.” She will only wear the colors black, grey, blue and dark red. She refuses foods with uncomfortable textures and as a range of sensory sensitivities. When anxious or stressed, she often chews on her fingers, and when overloaded, she will bang her head on walls, bedposts or her chair. If furniture is not available, she will hit herself instead. In the classroom, she alternately fidgety and so utterly absorbed that she doesn’t notice change of schedule. Claire is utterly unable to maintain organization and relies on an elaborate system of alarms, reminders, emails, lists, and fridge notes to remember appointments, chores, due dates, and suchlike, with varying degrees of success. She relies heavily on others to remind her to do various activities of daily living, like eating and drinking. She is able to hyperfocus for extremely long periods of time, and if allowed to hyperfocus on her special interests, she will forget to eat or sleep without prompting from another. This is especially problematic, as Claire has a number of chronic health conditions that require daily maintenance and compliance with a regular medication routine and a medical diet.

Carey is also in her mid-20s and currently lives with her partner of almost 4 years. She is currently a PhD student with an MSc and several years of work experience. While conducting full-time research as the head of her own project, she has been teaching herself chemical engineering course material to pass her comprehensive exams. This year, she also began to self-teach German in prep for an international post-doctoral position she hopes to win at some point in the future. She volunteers in science outreach and with a number of activist causes, in addition to being active within the student government at her university. She has prepared talks that have been delivered at international conferences and assisted in course development for upper-level undergraduate and graduate courses. Carey has several scientific publications in the works, all of which are likely to be published in high-impact-factor journals. Organization and socialization have been challenges her whole life, but she’s developed workarounds for her issues that allow her to get the most important things done reliably. She manages her health conditions competently and is often praised by her doctors as being an extremely knowledgeable patient who can sometimes teach them things about the latest research.

How would you identify Claire’s functioning level? What about Carey’s?

Think about it for a moment.

Now, what if I were to tell you they’re both me? Tell me, am I low-functioning or high?

This? Is why I and most other adult autistics I know think functioning labels are bullshit.

The thing!

Allistic people in general have this obnoxious habit of substituting nonsense words when they can’t think of the correct word for what they want to say. I wouldn’t mind that on its own – goodness knows I do it enough when having my own word retrieval issues or stutter problems – but the big problem is that they seem to expect everyone else to understand what they mean by it.

They get away with this because, by and large, other allistic people are able to puzzle out what they mean through a combination of guesswork, nonverbal cues, and social intuition. This creates a problem wherein they then expect everyone to be able to puzzle out what they mean.

An example, pulled almost verbatim from many real-life interactions of this sort, to illustrate the problem:

Person: Can you hand me the thing by the thing on the other thing?
Me: *blank stare* What?
P: The thing! By the thing on the other thing. Can you hand it to me?
Me: I don’t know what you’re talking about. What do you mean?
P: *speaking slowly and gesturing* The thing. By the thing. On the other thing.
Me: I don’t understand. What thing?
P: You know what I mean!
Me: No, I don’t!
P: God, you’re useless! I’ll do it myself!

When I was a kid, the above exchange would often see me grounded for “being difficult” or “being rude” or “talking back.” But I did not and still do not understand what people are talking about, and I am baffled at how allistic people can figure out as nonsensical a phrase as “the thing by the thing on the other thing.” What thing? What are you talking about?!

I will offer some advice, as a person who very often has trouble with words and is bad at emoting and doing the sort of nonverbal gesture-communication that allistics seem so fond of. If you (general-you, I include all people capable of communicating with language in this, though most people with speech issues probably already know about it) find yourself interacting with a person who is not understanding what you’re meaning about when you substitute a nonsense noun for a word you can’t think of at the moment, don’t take it personally. The other person is probably not aggravating you intentionally. They probably honestly have no fucking clue what you’re talking about.

So, here’s what works for me, since I can’t do the gesture-thing allistics do all the time: Describe what you’re talking about. Talk around the thing you’re having trouble finding the name of. I’ll give you an example of me talking with someone when I wasn’t able to make the word “snowman” happen:

Me: Those kids look like they’re having fun.
Person not looking out the window: Yeah? What are they up to?
Me: They’re building a – a. A. A, um. Crap. Thing.Person: A what?
Me: It’s big and rounded and white and bumpy. Has a carrot face.
Person: Snowman?
Me: Yes! Exactly. A snowman. They’re building a snowman.

And the conversation continued from there. Neither of us got aggravated or upset, and it didn’t spark a fight (by contrast, getting angry and calling someone names will spark a fight). Talking around the word giving you trouble allows meaningful conversation to continue and prevents excessive aggravation or frustration on either end because some communication is still happening.

This, like giving directions to misplaced objects, is another way that I find autistic people in general tend to have superior communication skills to our allistic peers. We know how to keep communication happening when we blank on a word because most of us have no choice but to figure it out as we grow up, due to our language and communication difficulties. This is another case where accommodating a disability will actually make your life easier, too – now, rather than grinding the conversation to a halt while someone plays 20 questions with you, you can keep meaningful communication going. The blanked-out word becomes a pothole rather than a roadblock to communication.

Take advantage of the workarounds autistic people and those with speech impediments have learned to effect communication. You might be surprised at how effective they are.

Open your eyes.

One thing that’s always been a marvel to me about allistic people is that when they point at a specific thing, others can understand what they’re pointing at. Even if it’s something small and hard to notice.

I can’t do that.

When I was a kid, it used to aggravate my parents. Exchanges would go as follows:

Me: Where’s the [item]?
Mom: It’s over there. *points*
Me: *looks* *doesn’t see it* Where?
Mom: There. *points more emphatically*
Me: *looks again* *still doesn’t see it* I don’t see it.
Mom: It’s right there! Open your eyes!
Me: They are open! I just don’t see it!

Or you could substitute “Open your eyes” with “You’d have better luck if you weren’t looking with your eyes closed,” both of which are expressions that it took me until yesterday to realize are not in fact accusations of groping about with my eyes shut but in fact disparaging remarks about my observational skills – which is fair enough because to mangle a metaphor, I’m someone who could easily miss the forest because I’m examining the bark patterns on the tree right in front of me.

So, to those people who have no difficulty at all following a point and get aggravated with that person who just seems to be too lazy to really look for a thing, I offer some advice and things to keep in mind:

  1. The person looking for the thing is just as aggravated with their inability to follow your point as you are.
  2. They are not doing this to be difficult. They are doing this because they literally are not able to register that they’re looking at the thing they want, for whatever reason. Yes, I know it might be right in front of their face. Believe me, it doesn’t matter. Obvious to you does not mean obvious to me. I wish I could explain what gets me to notice something, but I can’t.
  3. If pointing isn’t working, pointing more emphatically won’t work either.
  4. Neither will yelling.
  5. Or insulting.
  6. What is far more likely to work is clear directions relative to a landmark in the room. “Next to the printer on top of the blue book,” is something I can work with. “Over there” is not.
  7. Directions should be explicit and descriptive. Avoid meaningless word substitutions if the name of a thing escapes you. I will write more on this in a later post, but for now, suffice to say that if you can’t think of the words “printer” or “book,” describing what you’re talking about is a lot more useful. “Next to the thing that makes words on paper on top of the blue thing you read,” is directions I can follow. “Next to the thing on the thing,” is not.

I hope this helps allistic people improve their direction-giving abilities rather than just relying on a steadily more-emphatic series of points. The benefit of this is that even allistic people, in my experience, prefer the kind of specific and exact directions I tend to give (due to my inability to follow points, I don’t see the, erm, point of pointing). Allistic people I know will come and ask me for directions to things or where stuff is rather than my allistic coworkers because they know they’re not going to play 5 minutes of “Hotter/Colder” with only a point to go off. They’ll get my directions, and go and find it easily.

So rather than pointing, try giving explicit directions the next time someone asks you where something is. You might be surprised at its efficacy.

How I ask for help

Another post inspired by meatspace goings-on, like my previous.

So, I’ve been thinking a lot lately of the process of asking for help. Mainly because, due to the emotional state I described in my post on meltdowns and a meltdown that I correctly predicted followed by an almost-all-weekend shutdown, I realized that I was (and am still, to a lesser degree) completely overwhelmed.

So I’m going to write a bit about the process of realizing I’m in over my head, and asking for help.

Asking for help is complicated. It involves several steps. First, you have to realize you’re in trouble. Then you have to understand how you’re in trouble. Then you have to evaluate – correctly – whether you can manage on your own. If you decide you can’t, you have to admit to yourself that you need help. Then you have to think about what kind of help I need, evaluate what kind of help others are able to give, and decide on what is likely to be most helpful, given the resources of those around you and your current needs. Second-to-last, you have to ask for help, and finally, you have to avoid beat yourself up into non-productivity over needing help. The last step is not necessary for everyone, but is for a lot of people.

For me, I’m generally unaware of my own mental state unless I’m at an emotional extreme. So recognizing that the tight feeling in my stomach and my increasing problems with executive function and procrastination are all due to anxiety from feeling totally overwhelmed? Hard. Very hard. I’m still pretty much at the point where I can recognize that I’m stressed but not necessarily why and even if I can recognize the why, I might not be able to figure out the how. So, for this situation: I’ve known I’m stressed about something since January. I figured out that it was my exam causing the stress in March. And it was this week that I realized that how I’m stressed out is that I’m feeling overwhelmed because I didn’t know how I was going to get all the studying I needed to do done while also working full time. After two meltdowns and a shutdown in just one week (which is more meltdowns and shut downs than I’ve had in the preceding six months).

Evaluating whether I can manage on my own accurately is also hard, but for reasons less to do with stuff inherent to who I am (like the difficulty registering my own emotions) and more to do with stuff I’ve learned growing up. I’ve internalized this must-be-Wonder-Woman imperative that I can’t ever admit difficulty or overwhelm or weakness because This Isn’t Hard ™. So. I have to peel by my tendency to brush off my own distress and really evaluate: Is this currently within my ability to do on my own? If the answer to that is no, then I have to get myself to accept that I need help. Which is also hard, for the same reason. Usually (this month being no exception), I have to induce several avoidable meltdowns and/or shut-downs before I realize that I need to do something.

If I manage to get myself to accept whether I need help? Then I have to figure out what would help. Which is also hard, mainly because of my tendency to catastrophize. I have to divorce anxiety-jerkbrain from my thinking process and honestly evaluate what I need more of. Do I need more time? Do I need an extra set of hands? Etc.

Then I have to think about what other people can do for me. This is extremely difficult for me, because I have a hard time keeping track of who is good at what and who has which authorities and resources. Once I’ve figured out who can give me what, and what they’re likely to be willing to give me, I have to figure out who would be best to ask: Which person is most likely to give me something really useful?

Then I have to ask. Which is always awkward and I don’t really have a good social script figured out for, so mainly I just rehearse the conversation over and over and over in my head but sometimes screw it up by overcompensating on the don’t-seem-nervous front and instead coming off like an arrogant asshole.

Finally, regardless of what the other person does, I have to avoid beating myself up over needing help. I have to stop the “This isn’t hard! Everyone can do this, so why can’t you? Maybe you’re just lazy!” mental monolog that gets started every time I admit weakness.

And, that’s asking for help for me. It’s not easy. And that’s why people should teach autistic kids how to ask for help, and that their requests for help will be respected. Because otherwise you get twentysomething adults who take three months to even realize they probably should ask for help and another month to figure out how.