Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Zisk, Alyssa Hillary. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Zisk, A. H. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from

Wednesday, October 12, 2016

It's not just teachable skills

Sometimes (like, oh, yesterday and today) I see people talking about supported housing programs or transition housing programs (I think the difference is that transition ones are supposed to be short-term, though depending on how they decide when to move someone on, that might not work out.) And usually, if it's neurotypical people wanting to create programs to help autistic people, there's a big focus on teaching certain "independent living skills."

That means they want to teach things like:

  • How to safely use a stove (don't burn down the house)
  • How to effectively use a stove (actually make the food)
  • How to use the oven
  • How to use a microwave
  • How to do dishes
  • How to order take-out/delivery (unclear if this is over the phone or online)
  • How to do laundry
  • How to make a bed
  • How to make a phone call
  • How to clean the bathroom (because all the pieces in one go is apparently a single task??)
I know how to do all these things. I really do. A program that's aiming to teach me these skills may or may not reflect that, because no, I am not going to interact with people all day and still make myself dinner or make a phone call to order delivery, and my ordering delivery online is iffy too. With the meal plan I have at university, I can (and often do) go get the food and bring it back to my room where there are not people. However, if you can find a way to test only whether or not I know how to do the thing, not whether or not today is a day when I can actually do it after considering various other factors, you will find (as I already know) that I can do all these things. 

This doesn't mean I can live "independently" (alone, without a meal plan, needing to cook all my own food and do all my own laundry, scheduling my own appointments, calling the people who don't take email and who I can't get to in person to make the appointment, and on and on. 

In fact, the closest to living "alone" I've ever gotten was an academic year abroad where I had a roommate, but there wasn't a meal plan and my friends were on another continent, meaning that they were not able to come help me. This did not go well. (It did not help even a little bit that I was extra stressed out by knowing the administration had tried to keep me from coming at all once they found out I was autistic and that they made a few attempts to have me sent home during the year. Seriously, that sort of "don't let them try because disaster!" is just about a self-fulfilling prophecy, because everything is harder when stressed.) The mess was made vaguely manageable because:
  • When the roommate was making or getting food, she would usually ask if I wanted any/to come with. This meant that I would get at least that meal.
  • My mother actually shipped me snacks that did not involve any kind of preparation. She also shipped me menstrual products after I discovered that none of the stores near me sold tampons. Only pads. 
  • The program's academic advisor helped me put my half of the room into some semblance of order during our "academic" meetings more than once.
  • The program's residence advisor would actually *bring me meals* when I hit the "can keep up with my academic work or keep myself fed but not both" times. 
  • This was the *international* "dorms," which doubled as a hotel, and therefore someone else was cleaning the bathroom and changing the sheets when that needed to happen. (When I am dealing with my own linens, the wash point tends to be "I have bled on these in two different periods.")
Keep in mind that even with all of this, it was, in fact, still a mess. 

At college, I have a single room, a meal plan, and help keeping the room in some semblance of order+making clean clothing happen. This seems to be the bare minimum of support for "manageable."

And yes, learning how to handle the fact that I can't consistently make these things happen for myself is a thing. It's even a thing where a person who understands the actual problem might be able to help me with. (If you've suggested a life skills class, or if you've suggested anything involving a planner, I have already concluded that you do not understand the actual problem and have discarded your advice as so much noise.)  However, some skill that you can teach me so that I can then proceed to consistently make these things happen for myself is not a thing. 

There are skills I consistently retain, pretty much regardless of my physical or emotional condition. I can (and have) participated in mathematics competitions and done well while sleep deprived from a night in the ER and nursing a focally fractured shin, as well as while coughing my lungs out between rounds. I probably shouldn't have been in school either of those days, if I'm honest. I knew full well I wasn't safe to ride my bike to school (and therefore walked... on said fractured shin) in the first case. But I did, and I was still fine with the mathematics. 

There are other skills that can give out on me for many reasons, not all of which I even know. Speech is one of them. I lose speech pretty regularly, and I still go to class (and do math) while speech isn't working because math is sturdier than speech. All of the skills they talk about teaching as "independent living skills" are of this type. I know how to talk. Sometimes I can't. I know how to cook. Sometimes I can't. Heck, there are times when making use of my meal plan pushes my limits. I remember one day where lunch was Thai chicken wraps. I wasn't that hungry, so I only wanted half a wrap. I stood in front of the table with the wraps on it for a good two minutes trying to figure out how to make this happen before "there are knives" occurred to me. If it takes me two minutes to think of getting a knife which is in my line of sight, I probably shouldn't be using that knife. Thankfully, I was having lunch with a professor that day (no, really, his stopping by my office is probably also why I made it to the dining room at all that day.) He cut a wrap in two pieces. I took a piece. From there I was able to get a cup of liquid and a napkin, and make it to the table. Acquiring and consuming food is not easier for me than graduate math classes. 

If I need to make my own food, it's even harder. Here's an approximate list of the steps involved if I want to make ramen in the microwave at university.
  • Notice that I am hungry.
  • Stop doing whatever I was doing before.
  • Stand up.
  • Do I want tea too? Where is my tea jar? Where is a chopstick to stir the tea with? Is there still tea in the tea jar?
    • Pick up the tea jar.
    • Take the tea jar to the bathroom.
    • Dump the remaining cold tea into the sink.
    • Turn the sink on.
    • Put the jar under the sink.
    • Turn the sink off.
    • Empty the jar into the sink again.
    • Go back to my room.
  • Remember that I want ramen.
  • Grab a thing of ramen. (Do I still have the tea jar and the chopstick?)
  • Go down the stairs.
  • Do I want chicken in my ramen?
    • Take chicken out of the fridge. (actually several steps)
    • Dump chicken from bag to bowl.
    • Put chicken in microwave. (again several steps)
    • Set microwave for one minute.
  • Grab two tea bags.
  • Unwrap the tea bags.
  • Put the tea bags in the jar.
  • Fill the jar with boiling water. (Thank blob we have a machine that dispenses boiling water.)
  • Open the ramen package.
  • Remove the two small bags from the ramen package.
  • Empty the vegetable bag into the ramen container. (Do... something with the spices bag.)
  • Fill the ramen container with boiling water.
  • Carry the container full of boiling water to the microwave (don't spill!)
  • Put the ramen in the microwave.
    • Take the chicken out of the microwave if applicable.
  • Set the microwave for four minutes.
    • Add sugar to tea. 
    • Stir tea with chopstick.
    • Add whole milk to tea.
    • Do something for the remainder of the four minutes. Could be fall over on the couch in the room that has the microwave and fridge. Let's go with that because it means I'm still in the room when the timer goes off and this is long already.
  • Pull the ramen out of the microwave. Hot hot hot!
  • Carry ramen, tea, bag of spices, and possibly chicken upstairs.
  • Add spices+additional cayenne to ramen.
  • Mix ramen (more chopsticks.)
    • Add chicken to ramen, if applicable.
    • Mix ramen again.
And now, finally, I have ramen and tea. Realize that some of these steps could be broken down further. None of these steps are automatic for me. I can (and have) forgotten what I was doing and wandered off between any two of these. When I need to boil the water myself, I forget that I have boiled water for long enough that I need to boil it again an average of three times before I actually manage to make myself tea or ramen. 

So the thing I actually need, often, is someone who can remind me (but only at the actual time I need to do the thing, ahead of time is worse than useless) about a thing I need to do, possibly walk me through steps (and not in a "this is how you do the thing" way, because I actually do know how to do the thing and being condescended to will only make me mad), and in some cases, just make the thing happen for me because seriously this is not happening right now. Are any of those the skills they're going to teach me? No, because they aren't actually skills. 

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  1. You have so got it. I've been dealing with this more than 50 years.

  2. Yes, this, all of this! Your executive function difficulties appear to be slightly worse than mine, but I'm a LOT closer to you than to a neurotypical, and I always have trouble explaining this. Just because I can do the thing in the abstract doesn't mean that I can do it RIGHT NOW.

    For example, I know how to cook. I'm a good cook! I learned to cook fairly young! And there was a period when I was a teenager when I passed out from low blood sugar on average every other Saturday, because if you leave me alone in a house with a fully stocked kitchen I may or may not be able to feed myself.

    I actually ... didn't really notice that anything was wrong. Like, I'd wake up on the floor, shrug and tell myself I must have stood up too quickly, and go on my merry way without thinking anything of it. I don't know how long this went on, but long enough that I considered it normal and just part of my routine. That ended when Dad happened to be home from work just in time to watch it happen and freak out about it and get me juice and then a sandwich and explain that no, this was not normal, passing out was a BIG HONKING SIGN THAT SOMETHING WAS WRONG, and that we really needed to figure out a way that it wouldn't happen again.

    At the time, the answer was "try harder" because Saturdays were a day I never had anything more than a few chores to do, and usually the only other person in the house was my brother, so I could use my executive functioning on that. And then I went from there to college (dorm room and meal plan) and then back home and working for two years (mostly parents cooking, and when they didn't, they were around to do the prompting thing), so most days weren't really an issue.

    Now I am working full time and living on my own half a continent away from my family. I have enough executive functioning to be able to do my job, or do basic life maintenance tasks. But usually not both. And "try harder" is no longer the answer. I eat a lot of granola bars, trail mix, crackers, and fruit.

  3. Finally someone puts this thing into words. Query could you handle something like a robocall prompt. As in an automated phone call saying something like "Have you put chicken in the Ramen yet?", which would call you back like every 3 minutes until you acknowledged the prompt

    1. I absolutely can't handle a phone call of any kind, ring ring ring, but (because I'm an engineer!) I'd started thinking about designs for prompts that I *could* handle as soon as I finished writing this.

    2. Maybe a tablet mounted on the fridge, or an app on the phone in your pocket, that would go through the steps and give some kind of cue?

      And thank you for describing how EF impairment affects your ability to do the things you know how to do. I was absolutely unable to explain this to my doctor last year. She thinks I am just lazy and faking it, but she fired me as her patient anyway for being uppity. I need to find a doctor who communicates better.

  4. This is such an important post. thanks, thanks, thanks

  5. Actually, I've been learning that there are teachable skills for some of those - how to use a workaround, such as an app. But I doubt they're teaching those skills.


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