Dimensionality reduction is something I deal with in math, statistics, and engineering. It comes up in my research. The idea is that when data is complicated, because there are a lot of different kinds of information in it, we can make our lives easier by considering fewer variables. Sometimes we pick from the variables that are already there. Sometimes we smush several variables together and create new ones out of the results, then pick from those. Either way, it can be useful to reduce the number of variables, the number of dimensions, that we need to deal with in a complicated pile of data.
However, we lose information when we do so. Like everything else engineers need to do, there are trade-offs involved, and we need to recognize that. Dimensionality reduction means simplification, which can make large amounts of information easier to deal with. But over-simplification makes information less useful.
Using disability and access needs as an example:
I use a much more complicated thought process to decide what I can and can't do on any given day than people who know me might use to guess what I might and might not be able to do. This includes deciding when I'm just done for the day.
My major professor works with me in an environment (our lab) where my losing speech is most likely due to sensory triggers. If I lose speech due to sensory triggers, I'm leaving the environment where it happened. She knows that if I can't talk I'm probably going home. This is an appropriate simplification for the context.
However, when I was a graduate student in math, I most frequently lost speech in classes where I was a student because I'd already taught that day and I'd essentially run out of mouth-words. Nothing bad was happening, and nothing bad was going to happen because I stuck around and kept doing math without speech. My classmates and professors knew that if I couldn't talk, I was probably going to grab a whiteboard marker and start writing on the board instead. This was an appropriate simplification for the context.
Those are both examples of appropriate dimensionality reduction. In the lab, "can speak" vs. "arrived non-speaking" vs. "lost speech in the lab" was a 3-possibility variable that made a decent proxy for how I was feeling and how well I could work. In the math classroom, whether or not I can speak wasn't an important variable.
Ignoring the variable of whether or not I can speak in the lab would mean ignoring useful information. Using the variable of whether or not I can speak in the math classroom might mislead people into finding patterns that aren't really there. So it's important to choose the right variables to focus on!
And yes, this applies to functioning levels. In addition to being ableist and grading against a neurotypical standard (which is its own, major issue), functioning levels attempt to reduce all the complex information about a persons abilities and needs over time and across a variety of contexts down to one dimension. That's always going to be inappropriate dimensionality reduction, simplifying what we know to the point that it's useless. Talking about low, medium, or high support needs isn't going to fix this problem. Neither will talking about low vs. high masking as if either of those means a single thing. Those still use a single dimension, and you can't shove enough information about what those support needs actually are, or what the specific effects of masking are into a single dimension for it to ever work.
Showing posts with label For Parents. Show all posts
Showing posts with label For Parents. Show all posts
Friday, September 6, 2019
Friday, August 30, 2019
That AAC on a plane story
I want to talk about a thread that's going viral.
My problems are not with Rachel, but I do have problems.
Problem the first:
Rachel doesn't think this kid's been exposed to much in the way of communication therapy. I don't know about therapy with a focus on speech, but given the father's confusion and how fast the kid responded to a low-tech communication board, I'm quite sure he hadn't been exposed to AAC before.
That's a problem. Yes, thank you for introducing communication supports. As an Autistic AAC user doing AAC work, I am appalled and horrified that people are reliant on a chance encounter with an SLP on a plane in order to be introduced to AAC. Communication access is a human right. I'm glad Rachel got seated next to this father/son pair, and I'm glad she introduced AAC. She did the right things in a situation that should never have happened. There should have been communication access years ago.
I'm happy for this family, that they have AAC now. I'm sad for this family, that this is what it took. A chance meeting with an SLP on a plane.
And you know what else concerns me?
People are sharing this like it's a heartwarming story. It's a terrifying story. Imagine how many doctors and therapists failed this family, that communication access rested on this chance encounter. Imagine how many people still don't have communication access.
This is, in fact, an important story. It's an illustration of just how dire the situation is for autistic people and our families trying to access the human right of communication. We are being "served" by people who don't know to consider communication board, who don't know to consider AAC. We are being "served" by people who see a non-speaking person who grabs things and assumes the way to go is to try to control the "behavior" rather than to provide other ways to communicate that they want those things. And we are being "served" by people who presume that non-speaking means non-thinking.
And no, I don't mean people who presume that non-speaking means intellectual disability. Non-speaking people with intellectual disabilities can use communication supports. I mean people who assume there are no thoughts worth trying to communicate, that the primary "service" needed is control over the person. It's a problem whether or not a non-speaking person actually has an intellectual disability.
So, share away. Just remember it's a story about years of communication denied and systemic problems. It's a story about a kid who didn't get to have his communication honored until he was about 10, who had his attempts at communication treated as "challenging behaviors" instead of attempts at communicating sans speech. It's a story about a chance encounter, and it's a story about everything that had to go wrong for that chance encounter to matter. This is no better than the high school robotics team making a prosthetic for a kid whose insurance denied it: good for the team, but remember why it was needed.
Share this story as an illustration of what's wrong in our system, not just as a story of one person who did a good thing.
I just had such an affirming experience. On my 8hr intl flight back from a conference, I sat next to a father/son. In broken English, the father began to apologize/warn me that his ~10 yr-old son had severe nonverbal autism, and that this would like be a difficult journey. 1/— Rachel R. Romeo (@RachelRRomeo) August 28, 2019
My problems are not with Rachel, but I do have problems.
Problem the first:
I tried to see if he was stimulable for a communication board. I started by pulling up some standard images for basic nouns on my computer but I could tell that screens really bothered him. So I summoned my god-awful drawing skills and tried to create a (very!) low-tech board. 4/— Rachel R. Romeo (@RachelRRomeo) August 28, 2019
Rachel doesn't think this kid's been exposed to much in the way of communication therapy. I don't know about therapy with a focus on speech, but given the father's confusion and how fast the kid responded to a low-tech communication board, I'm quite sure he hadn't been exposed to AAC before.
That's a problem. Yes, thank you for introducing communication supports. As an Autistic AAC user doing AAC work, I am appalled and horrified that people are reliant on a chance encounter with an SLP on a plane in order to be introduced to AAC. Communication access is a human right. I'm glad Rachel got seated next to this father/son pair, and I'm glad she introduced AAC. She did the right things in a situation that should never have happened. There should have been communication access years ago.
By the end of the flight, he had made several requests, initiated several times, & his behaviors had reduced quite a bit. The father was astounded – clearly no one had ever tried an AAC approach with him. I gave him the paper & showed him how to use it, and he nearly cried. 6/— Rachel R. Romeo (@RachelRRomeo) August 28, 2019
I'm happy for this family, that they have AAC now. I'm sad for this family, that this is what it took. A chance meeting with an SLP on a plane.
And you know what else concerns me?
People are sharing this like it's a heartwarming story. It's a terrifying story. Imagine how many doctors and therapists failed this family, that communication access rested on this chance encounter. Imagine how many people still don't have communication access.
This is, in fact, an important story. It's an illustration of just how dire the situation is for autistic people and our families trying to access the human right of communication. We are being "served" by people who don't know to consider communication board, who don't know to consider AAC. We are being "served" by people who see a non-speaking person who grabs things and assumes the way to go is to try to control the "behavior" rather than to provide other ways to communicate that they want those things. And we are being "served" by people who presume that non-speaking means non-thinking.
And no, I don't mean people who presume that non-speaking means intellectual disability. Non-speaking people with intellectual disabilities can use communication supports. I mean people who assume there are no thoughts worth trying to communicate, that the primary "service" needed is control over the person. It's a problem whether or not a non-speaking person actually has an intellectual disability.
So, share away. Just remember it's a story about years of communication denied and systemic problems. It's a story about a kid who didn't get to have his communication honored until he was about 10, who had his attempts at communication treated as "challenging behaviors" instead of attempts at communicating sans speech. It's a story about a chance encounter, and it's a story about everything that had to go wrong for that chance encounter to matter. This is no better than the high school robotics team making a prosthetic for a kid whose insurance denied it: good for the team, but remember why it was needed.
Share this story as an illustration of what's wrong in our system, not just as a story of one person who did a good thing.
Monday, December 4, 2017
What if they're stimming with the device?
In response to the fact that it is not OK to take someone's communication device away, ever, apparently it is common to ask, what if the person is stimming and (we assume) that's interfering with communication.
There are a few points I want to make in response to that. Some I've seen elsewhere. Some, less so.
Prizant, B. M., & Duchan, J. F. (1981). The functions of immediate echolalia in autistic children. Journal of speech and hearing disorders, 46(3), 241-249.
Prizant, B. M., & Rydell, P. J. (1984). Analysis of functions of delayed echolalia in autistic children. Journal of speech and hearing research, 27(2), 183-192.
There are a few points I want to make in response to that. Some I've seen elsewhere. Some, less so.
- What would you do if a kid was vocally stimming, with their natural voice, and you thought that was impeding their communication? Still not taking away their voice, right? Even if you think they're doing something noncommunicative with their voice, you're still taking their voice in that example. Never means never. (This is mentioned in the PrAACtical AAC post, but it was also my immediate gut reaction.)
- Or what would you do if you heard me stimming with my AAC device? Cause yeah, I'm an adult and you know I can communicate and all, but I do that sometimes. Would you consider taking my device? I'm kind of assuming it's a no there because the idea that you might try is a bit too scary for me to look at right now, but why wouldn't you do that to me, if you would to them? (This is somewhat an explanation to my immediate gut reaction.)
- Keep in mind that communicative echolalia is a thing. In my experience ... yeah, sometimes repeating words or sounds because it feels good is a thing but there's often a meaning. (pickles pickles pickles pickles pickles resulted in my getting pickles, in college. It was also stimmy, as a side bonus.) For those looking for citations on the communicative functions of echolalia, Barry Prizant did some work on that (Prizant & Duchan, 1981; Prizant & Rydell, 1984). I don't trust him on the whole, remember my reactions to Uniquely Human, but communicative functions of echolalia is a useful thing he did.
- Echolalia, repeating words and phrases is also how a lot of autistic people learn language in the first place. The thing that is how we learn language is not actually a barrier to communication and if this is what's going on, your assumption that this is a barrier to communication is just wrong. Do not pass Go. Do not collect $200.
- Also, is the babbling stage a thing with AAC use? Cause it usually is with oral speech and it's not successful communication yet but it has to happen in order to get to successful communication later. Exploring language and using it in unexpected ways is part of learning language. (This shows up in the PrAACtical AAC post.)
- Stimming is great. I am usually stimming in some way. It's not usually vocal because that's just not what tends to work for me, but I am usually stimming. Hence, fidget spinners and blanket pieces. The fact that a person is, in fact, stimming does not mean you should stop them from doing whatever it is they're doing to stim. Suggesting alternative ways of stimming can be OK under some circumstances, but seriously, "they're stimming" doesn't mean "they should stop." Similarly, "it's echolalia" doesn't mean "they should stop."
Academicy Citations
Prizant, B. M., & Duchan, J. F. (1981). The functions of immediate echolalia in autistic children. Journal of speech and hearing disorders, 46(3), 241-249.
Prizant, B. M., & Rydell, P. J. (1984). Analysis of functions of delayed echolalia in autistic children. Journal of speech and hearing research, 27(2), 183-192.
Saturday, May 20, 2017
"Your taste buds will change"
CN for food and vomit.
That's one of those sentences I read every so often, which is technically true, but which doesn't actually lead to the conclusions I see it used to support. Taste buds really do change with age! This is a thing that happens, and it's part of why there are certain foods kids tend not to like but which adults are more able to tolerate. (I think most alcoholic drinks go in this category, where kids tend not to like the taste anyways?)
As true as it is that tastes change, there's some things my brain has decided I need to explain now about why this doesn't mean getting into a power play with someone over what they eat and how they're "picky" is a good idea.
That's one of those sentences I read every so often, which is technically true, but which doesn't actually lead to the conclusions I see it used to support. Taste buds really do change with age! This is a thing that happens, and it's part of why there are certain foods kids tend not to like but which adults are more able to tolerate. (I think most alcoholic drinks go in this category, where kids tend not to like the taste anyways?)
As true as it is that tastes change, there's some things my brain has decided I need to explain now about why this doesn't mean getting into a power play with someone over what they eat and how they're "picky" is a good idea.
- You probably don't know what the result of "pushing the issue" is going to be. I don't just mean long term results. I mean short term, in the minutes to hours right after forcing the (in)edible object down. Obviously, you don't expect it to be a big deal, or else you wouldn't be trying to force a "picky" eater to eat something they can't eat. How wrong are you ready to be? TMI alert, last time I made myself drink something that was an issue, it came back up. (If it hadn't been something I was medically supposed to have, I wouldn't have tried. It still didn't work, because it didn't stay down.)
- The fact that someone's tastes may change and they may be able to eat a food later doesn't mean they can tolerate it now. The change hasn't happened yet. So even if you're correct about the nature of the upcoming change, you're still trying to make someone eat something they don't currently tolerate. See point 1.
- Also, even if you were going to be correct, you can cause that not to happen by creating an association between being forced to eat the food and whatever sensory issue it's hitting. That can create a new issue with the food in question, besides taste...
- The issue may not be the taste. I can't drink anything carbonated. You might think that's a rather broad category for a taste issue. You'd be correct. It's not a taste issue. It's best described as a texture issue, and you've said nothing about texture sensitivities changing. In fact, most of the foods I can't deal with are texture issues, not taste ones.
- The changes in taste may not be the ones you expected or hoped for. Some foods that were issues before can become non-issues, but it can go the other way too. As a very small human, I could eat mushrooms. As an adult human, I can not eat mushrooms. (It's also the texture, not the taste.) Chocolate pudding was a "safe" food for me as a kid. It's about 50-50 on my being able to eat it now. (Texture again. Also, partially related to times when I didn't get the choice about yogurt, which has never been an OK texture and which is close enough to pudding that making yogurt even worse made pudding a problem. See point 2.1.) I ... actually can't think of any foods I can have now that I couldn't deal with as a kid.
Friday, March 17, 2017
Dear Well-Meaning Autism Mom Looking For A Surrogate Mom For Your Son, Please Don't Assume The Person You Approached Is A Girl Or Straight
Guest post by Elizabeth Rosenzweig.
So I run an autism meetup. Parents of post-pubescent autistics are not invited. There’s a number of reasons why but one of them in particular has been making the blog rounds: well-meaning but misguided parents who, out of concern for their son’s (and it is always a son, isn’t it?) inability to fend for himself, look to set up a trust fund for him in the shape of a kindly woman savior who will cook and clean and pay his bills for him, forever and ever, amen. The guys themselves can be the problem, too; a person who should be a grown-ass man asks you out and is then shocked, SHOCKED, to discover that you’re just as shit at getting A Job, remembering to pay bills on time, and feeding/picking up after yourself as he is, if not worse. (I, uh, may or may not have very personal experience with that one.)
But I’ve already had two very smart friends I admire address that aspect in plenty of depth, so, well-meaning but misguided parent, let me address another one that you may not have considered.
That long-haired, girl-shaped, pretty, kind person you met, the one you think would look so cute on the arm of your precious manchild (or your precious self), might not actually be a girl. Or straight.
That long-haired, girl-shaped, pretty, kind person you met, the one you think would look so cute on the arm of your precious manchild (or your precious self), might not actually be a girl. Or straight.
They could be asexual or aromantic - content and whole within themselves. They might be allosexual but gay. They might use she/her pronouns but feel utterly alienated from femininity as a concept. They might be a genderless android. They might be a trans man. You just don’t know!
It’s almost like that long-haired, girl-shaped, pretty, kind person is… hear me out for a second… a person. Not your personal insurance policy, or your uncompensated PCA, or your romantic-comedy-prize, or your glorified German Shepherd, but an entire human being unto themselves, with weaknesses and feelings and ambitions beyond saddling themselves to some cisgendered guy who wants things done just like his mom did them. *They* might be the one needing a PCA! They might maybe sometimes need someone to hold them while they cry hysterically because they foolishly expended all their energy for the day on folding three-quarters of the laundry. (I, uh, may or may not have very personal experience with that one too.)
How do I even address the sexual side of things with you? You, hypothetical mom, have almost certainly had experience with shutting up and taking it while a male partner got his rocks off inside you. Is that how you want your son treating his life companion? Is that how you would want to be treated? I’m certainly sick of it, or worse, being treated as deranged for exploding in frustration after having my own needs go unacknowledged and unmet for years at a time. I got so sick of it that I quit men and went monogamous with an assigned-female-at-birth genderless android. So far, so good. But how would you know that from looking, unless you saw me and my wife together?
The point is, you don’t consider those things. You think about your own fears, which are visceral and immediate. What will become of my child after I’m gone? When will I have a chance to feel like a person and not a 24/7 PCA - won’t anyone please help me? And those questions resonate so loudly inside your own head that you don’t stop to ask yourself the ones I’ve posed here. That’s not my problem, though, nor is it the problem of any long-haired, girl-shaped, pretty, kind autistic. It’s not fair of you to put your anxieties on us, when we have so many of our own to contend with.
One of the side benefits of running an autism meetup is that you have the opportunity to meet a lot of people of all ages and genders and walks of life. I have quite a few lovely gentlemen who are regular attendees. Let me reassure you, dear, hypothetical mom, that almost all of them have turned out just fine, with the support of agents and agencies who are meant to do the work that you are looking for from that nice autistic at the meetup. It’s actually the ones whose parents have done the most coddling and interfering who are struggling the most.
One of the side benefits of running an autism meetup is that you have the opportunity to meet a lot of people of all ages and genders and walks of life. I have quite a few lovely gentlemen who are regular attendees. Let me reassure you, dear, hypothetical mom, that almost all of them have turned out just fine, with the support of agents and agencies who are meant to do the work that you are looking for from that nice autistic at the meetup. It’s actually the ones whose parents have done the most coddling and interfering who are struggling the most.
So please. Stop putting your cissexist, heteronormative expectations on people you barely know, in the name of providing for your own offspring. You’ll start working on real solutions much faster once you do.
Tuesday, October 25, 2016
Meltdown
Recently, a friend of mine asked what we wished others knew about meltdowns. (She blogged about meltdowns a while back, too. It was good.) This caused me to make words. Many words.
You see, I have experience at appearing to be more OK than I am. (I think a lot of people have this experience.) I have also been taught, in a variety of ways, that I should not show around other people that I am not OK. And the thing about getting around that is … it takes energy to break that, energy I might not have when I'm not OK. Often, holding on to some appearance of being OK until I am alone is cheaper for me than allowing myself to show that I'm having a problem. (I'm not faking overload. I might be faking not-overload.)
You see, I have experience at appearing to be more OK than I am. (I think a lot of people have this experience.) I have also been taught, in a variety of ways, that I should not show around other people that I am not OK. And the thing about getting around that is … it takes energy to break that, energy I might not have when I'm not OK. Often, holding on to some appearance of being OK until I am alone is cheaper for me than allowing myself to show that I'm having a problem. (I'm not faking overload. I might be faking not-overload.)
Now,
there is still a point where I will melt down, like it or not, and
there are limits to how much I can delay this. So it is possible for
me to melt down in front of people. And most of the people I'm around
would want to help, would want to check in to make sure I'm OK, that
sort of thing. There's just one problem: I reach the point where I
can put up an (unusually expensive) facade of OK before I reach the
point where I'm actually
ready to start putting myself together.
What
this means:
If I
look like I'm on the edge of a meltdown, there are a few questions
you can ask me, one at a time. I'm not going to keep track of a bunch
of questions at a time, really do stick to one. And do not
touch me. I know people do light touch for reassurance but this is a
bad idea. You can
point out a spot that's semi-enclosed (corner, alcove, back to the
wall) and ask if I want to sit there1.
I probably will. Don't push it if I say no. You can offer me a
satin-bound blanket or a fidget toy. I'll probably take you up on
either (or both) of those, but again, don't push it. And you can ask
if I'd like you to leave me alone. I might say yes, but I also might
say no – sometimes, especially if I've got another event coming up
sooner than I'd be able to have the meltdown and start putting myself
back together afterwards, I'm going to prefer to keep delaying. I'm
better at delaying than I really should be, but sometimes this
unfortunate skill gets used. But if I say yes, it's time for you to
go away, and not come
back until either I come looking for you or until the next day. Don't
come check on me to see if I need anything. Don't come check on me to
make sure I'm OK. Because your presence would mean my training to
appear to be OK would make me appear to come out of the meltdown
sooner, and because this is actually bad,
doing either of those things is very likely to ensure that
I am not OK. It will cause me to
put the facade of OK up before the actually OK gets going. It does
not matter how many times you tell me I don't need to put that facade
up for you. I will not, in that state, be able to stop myself from
doing what I've been taught I need to do. Stay away.
No, you are not
the exception to this, because there are none.
If
I am actively melting down, that means I'm in bad enough shape that I
can't
hide it. That's not good, but that does mean there are some things
you might be able to do before I've got enough juice to run the
facade (and not enough to stop myself from doing so if there's anyone
around.) First, do not
touch me. Second, if I am not already curled up in a corner or alcove
or with my back to the wall, offer to help me get to one of those
positions. If I say yes, you can lead me to one. (See above: do not
touch
me to lead me.) Third, if there's a soft, satin-bound blanket around
that I am not already in possession of, putting it near me is a good
idea. (Not on me. Again: do not
touch me.) If I don't seem to understand the offer, this is a cue to
leave. Fourth, melting down burns a lot of energy. I am going to be
tired, hungry, and thirsty. If you can put food and/or liquid that is
ready to be consumed far enough away that I won't accidentally hit it
while rocking or flapping, but close enough that I don't need to
interact with any people
to get at it, this is potentially useful. (Post-meltdown, I am even more likely than usual to get lost somewhere in the process of attempting to create and consume food.) Once location, blanket, and
consumable objects are either taken care of or not, it's time for you
to go away. The same rules apply as if you were heading out before I
actually melted down.
Counterintuitively,
if I start showing any signs of being OK again after I melted down,
that's the point where you absolutely must
leave now.
I'm not OK yet, but I'm starting to be able to fake it and you need
to go away so that I can choose not to do so. Those rules from
heading out before I actually melted down? They still apply. You need
to go away.
1 Weird
as this may seem, if I'm going to the corner or grabbing the blanket
on my own, that's a good sign. It means I've caught on to the low
energy in time to drop the performance, which will buy me more time
able to do stuff before I run out of energy entirely. It also means
I'm still in good enough shape that if I felt I needed to just
leave, I could have done so. This is the part where you get to see a
person getting stuff done while visibly autistic. Just like the
times where I'm pulling out a whiteboard marker, pen, or tablet to
go to class non-speaking, I'm actually fine. Appearing to have my
neurotype is not an emergency.
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Monday, October 17, 2016
Plans, Executive (Dys)function, and Throwing Exceptions
I've written before about plans and routines, where a routine can become an implicit plan, and if a plan gets thrown off, I'm going to have a bad time. I've also (really recently!) written about "independent" (as defined by able people, not as defined by the independent living movement) living, supports, and teachable skills not being all there is to it. Now I'm writing about something that connects both of these, thanks to Avi for providing the word to describe it: Exception handling. Thanks to Avi also for the idea of writing these out as scripts. I've done enough programming to write psuedocode for this. Think "vaguely Python-like". The code is intentionally a bit messy because, well, the way my head actually deals with this stuff is a bit messy. So there's exceptions and different kinds of loops mixed together, and sometimes things will just crash instead of doing what you'd expect, even if it's not immediately obvious why.
I've done a little bit with programming, enough to know that sometimes you can break a program by giving it input it doesn't expect. If my program is supposed to take a number between 0 and 100 and convert it into a letter grade, which is an actual simple script they had us write when we were learning, it might not give me an output for a number less than 0, a number greater than 100, or an input that is not a number. It also might, but it wouldn't be especially useful output. (It's not a letter grade for an actual score.) Still, the program just sort of ... stopping ... the first time the input is supposed to get used is a very real possibility if the input is wrong or missing.
Something like that can happen with my change of plans issues, and with my getting things done issues. It's even what goes wrong for me on a lot of surveys and popular online quizzes.
self.eat(lunch);
self.goto(meeting);
Error: meeting not found.
And then I am done. I don't really have a script to handle that exception, so I crash.
self.eat(lunch);
try self.goto(meeting);
try self.goto(office);
try self.playgames();
while time>5:30 pm;
try self.eat(dinner);
This time the plan for the meeting is tentative, so instead of "go" it's "try to go" and the script does not immediately crash if the meeting is not found. This is why "no plan" or "tentative plan only" is better for me than "broken plan." Also, there can be lines after the attempted meeting about what I'll do if the meeting isn't actually a thing that's happening.
Note that self.eat(dinner) can time out or get lost at any point in this list, and that any of the items used being missing will throw an exception that I may or may not be able to handle.
floor.list(objects);
for object on floor;
try;
self.pickup(object);
location = object.properlocation();
object.place(location);
energy -=5
if energy <=0;
stop;
return false
except object.properlocation()==null;
if energy>=10;
define object.properlocation();
energy -= 10;
except contents(object.properlocation()) != null;
if energy>=15;
try;
object=location.contents();
energy -= 15
self.flop();
And to be clear, this is what the script looks like after a lot of optimization. I did not always have the two except bits that could catch issues. Common places for this program to fail were at location=object.properlocation() because I don't know where something goes, at object.place(location) because there's already something else where the thing goes. These used to lead to a complete crash.
Now I've got some level of exception handling define a new output for object.properlocation() or interrupt and choose a new object to move because location is occupied. That's what the exceptions are meant to handle, but you might notice that they are expensive! (You also might notice that I can get my energy as low as -5 before hitting the stop point if I'm not careful, which is a problem I'm still working on. If I were actually a computer I could just change some numbers around in my if statements, but I am not.)
I can also run through all my RAM trying to list the objects on the floor and never even get started. This is a thing that happens.
for question in survey;
read(question);
if question.type()==TF or question.type()=multiple choice;
answers={true, false};
if question.type()=multiple choice;
answers=read(question.answers());
try answers.choose(correct);
increment question;
if "other" is in answers;
answers.choose(other);
try answers.write();
try self.cry();
crycount+=1;
answers.choose(leastbad);
increment question;
if question.type()==open answer;
try answers.write(response);
increment question
except question.brainbreak==true;
try self.cry();
crycount+=1;
try answers.write(nonsense);
increment question;
try answers.write(nope.explain());
crycount+=1;
increment question;
if question.type()==number rating;
try self.cry();
crycount+=1;
random.choosenumber();
increment question;
self.flop(crycount hours);
So there's two things in there which lead to bad things. It's try self.cry() because I don't always actually cry, but the count definitely still gets incremented and this sort of thing knocks me over pretty badly. I'm done for the day after even a short inaccessible survey. Multiple choice questions where none of the answers are quite right are bad, especially if they don't have an other option. Certain open response questions also break my brain. I tend to think in patterns rather than examples and my episodic memory is terrible, so if you ask for an example of a thing that happened to me we'll usually get into trouble. Choosing a number to explain how much I agree or disagree with a statement is really bad to start, and it's even worse if the statement is ambiguous or one that I only partially agree with. These kinds of problems, by the way, are why I thought the language utilization reports were the hardest thing they asked me to do while I was in China. They were also the first time I managed to ask for help with one of these, leading to the next bit of psuedocode:
Surveys/Quizzes (not required AND/OR can ask for help)
required=read.survey.required(); % Don't need to check help value because
% this script is only used if help is
% available OR completion is optional.
crycount=0 % Initialize the cry count.
for question in survey;
read(question);
if question.type()==TF or question.type()==multiple choice;
answers={true, false};
if question.type()==multiple choice;
answers=read(question.answers());
try answers.choose(correct);
increment question;
if "other" is in answers;
answers.choose(other);
try answers.write();
elif required==false;
return false;
else:
help.request();
pause();
answers.choose(help);
increment question
if question.type()==open answer;
try answers.write(response);
increment question;
except question.brainbreak ==true;
if required==false;
return false;
else:
try self.cry();
crycount+=1;
help.request();
pause();
answers.write(help);
increment question
if question.type()==number rating;
elif required==false;
return false;
else:
crycount+=random(0,1);
help.request();
pause();
answers.choose(help);
increment question
self.flop(crycount hours)
Progress! Crying and flopping are significantly reduced. (So is the likelihood of my getting the survey done, but I'm OK with that.) For timing reference, my language utilization report from my year in China was the first time I managed help.request() for this sort of thing. They, uh, weren't quire sure how to handle that, because these reports aren't the hard part for most people. Their first idea was to ask the residence director to help me. This got the report done, which was some sort of progress, but it involved enough crying (by me) and confusion (by both of us) that she decided to have the program just ... give up. No more language utilization reports for me, it's not worth it. (I agreed. It was really, really not worth it.)
Notice that while someone helping me eliminates the exhaustion cost for a multiple choice or true/false question that is ambiguous or has bad answers, it does nothing about the exhaustion cost for a brain-breaking open ended question, and it reduces but does not eliminate the cost for "rate this from 1-n" type questions. That's part of why the language utilization reports got nixed, and why the survey I was supposed to do for my university after the year abroad was done slowly, painfully, and with help.
And as for things that aren't just teachable skills? Yes, teaching me certain skills (or practice with certain skills that I theoretically have) could have the effect of writing in ways to handle specific exceptions. That's not the same thing as making my exception handling work at a "standard" speed or efficiency, and it's definitely not the same thing as reducing the associated costs for those exceptions.
I've done a little bit with programming, enough to know that sometimes you can break a program by giving it input it doesn't expect. If my program is supposed to take a number between 0 and 100 and convert it into a letter grade, which is an actual simple script they had us write when we were learning, it might not give me an output for a number less than 0, a number greater than 100, or an input that is not a number. It also might, but it wouldn't be especially useful output. (It's not a letter grade for an actual score.) Still, the program just sort of ... stopping ... the first time the input is supposed to get used is a very real possibility if the input is wrong or missing.
Something like that can happen with my change of plans issues, and with my getting things done issues. It's even what goes wrong for me on a lot of surveys and popular online quizzes.
Change of plans
self.goto(class);self.eat(lunch);
self.goto(meeting);
Error: meeting not found.
And then I am done. I don't really have a script to handle that exception, so I crash.
Tentative plans
self.goto(class);self.eat(lunch);
try self.goto(meeting);
try self.goto(office);
try self.playgames();
while time>5:30 pm;
try self.eat(dinner);
This time the plan for the meeting is tentative, so instead of "go" it's "try to go" and the script does not immediately crash if the meeting is not found. This is why "no plan" or "tentative plan only" is better for me than "broken plan." Also, there can be lines after the attempted meeting about what I'll do if the meeting isn't actually a thing that's happening.
Note that self.eat(dinner) can time out or get lost at any point in this list, and that any of the items used being missing will throw an exception that I may or may not be able to handle.
Cleaning my room
self.examine(room);floor.list(objects);
for object on floor;
try;
self.pickup(object);
location = object.properlocation();
object.place(location);
energy -=5
if energy <=0;
stop;
return false
except object.properlocation()==null;
if energy>=10;
define object.properlocation();
energy -= 10;
except contents(object.properlocation()) != null;
if energy>=15;
try;
object=location.contents();
energy -= 15
self.flop();
And to be clear, this is what the script looks like after a lot of optimization. I did not always have the two except bits that could catch issues. Common places for this program to fail were at location=object.properlocation() because I don't know where something goes, at object.place(location) because there's already something else where the thing goes. These used to lead to a complete crash.
Now I've got some level of exception handling define a new output for object.properlocation() or interrupt and choose a new object to move because location is occupied. That's what the exceptions are meant to handle, but you might notice that they are expensive! (You also might notice that I can get my energy as low as -5 before hitting the stop point if I'm not careful, which is a problem I'm still working on. If I were actually a computer I could just change some numbers around in my if statements, but I am not.)
I can also run through all my RAM trying to list the objects on the floor and never even get started. This is a thing that happens.
Surveys/Quizzes (must complete, no aid available)
crycount=0 % Initialize the cry count.for question in survey;
read(question);
if question.type()==TF or question.type()=multiple choice;
answers={true, false};
if question.type()=multiple choice;
answers=read(question.answers());
try answers.choose(correct);
increment question;
if "other" is in answers;
answers.choose(other);
try answers.write();
try self.cry();
crycount+=1;
answers.choose(leastbad);
increment question;
if question.type()==open answer;
try answers.write(response);
increment question
except question.brainbreak==true;
try self.cry();
crycount+=1;
try answers.write(nonsense);
increment question;
try answers.write(nope.explain());
crycount+=1;
increment question;
if question.type()==number rating;
try self.cry();
crycount+=1;
random.choosenumber();
increment question;
self.flop(crycount hours);
So there's two things in there which lead to bad things. It's try self.cry() because I don't always actually cry, but the count definitely still gets incremented and this sort of thing knocks me over pretty badly. I'm done for the day after even a short inaccessible survey. Multiple choice questions where none of the answers are quite right are bad, especially if they don't have an other option. Certain open response questions also break my brain. I tend to think in patterns rather than examples and my episodic memory is terrible, so if you ask for an example of a thing that happened to me we'll usually get into trouble. Choosing a number to explain how much I agree or disagree with a statement is really bad to start, and it's even worse if the statement is ambiguous or one that I only partially agree with. These kinds of problems, by the way, are why I thought the language utilization reports were the hardest thing they asked me to do while I was in China. They were also the first time I managed to ask for help with one of these, leading to the next bit of psuedocode:
Surveys/Quizzes (not required AND/OR can ask for help)
required=read.survey.required(); % Don't need to check help value because
% this script is only used if help is
% available OR completion is optional.
crycount=0 % Initialize the cry count.
for question in survey;
read(question);
if question.type()==TF or question.type()==multiple choice;
answers={true, false};
if question.type()==multiple choice;
answers=read(question.answers());
try answers.choose(correct);
increment question;
if "other" is in answers;
answers.choose(other);
try answers.write();
elif required==false;
return false;
else:
help.request();
pause();
answers.choose(help);
increment question
if question.type()==open answer;
try answers.write(response);
increment question;
except question.brainbreak ==true;
if required==false;
return false;
else:
try self.cry();
crycount+=1;
help.request();
pause();
answers.write(help);
increment question
if question.type()==number rating;
elif required==false;
return false;
else:
crycount+=random(0,1);
help.request();
pause();
answers.choose(help);
increment question
self.flop(crycount hours)
Progress! Crying and flopping are significantly reduced. (So is the likelihood of my getting the survey done, but I'm OK with that.) For timing reference, my language utilization report from my year in China was the first time I managed help.request() for this sort of thing. They, uh, weren't quire sure how to handle that, because these reports aren't the hard part for most people. Their first idea was to ask the residence director to help me. This got the report done, which was some sort of progress, but it involved enough crying (by me) and confusion (by both of us) that she decided to have the program just ... give up. No more language utilization reports for me, it's not worth it. (I agreed. It was really, really not worth it.)
Notice that while someone helping me eliminates the exhaustion cost for a multiple choice or true/false question that is ambiguous or has bad answers, it does nothing about the exhaustion cost for a brain-breaking open ended question, and it reduces but does not eliminate the cost for "rate this from 1-n" type questions. That's part of why the language utilization reports got nixed, and why the survey I was supposed to do for my university after the year abroad was done slowly, painfully, and with help.
And as for things that aren't just teachable skills? Yes, teaching me certain skills (or practice with certain skills that I theoretically have) could have the effect of writing in ways to handle specific exceptions. That's not the same thing as making my exception handling work at a "standard" speed or efficiency, and it's definitely not the same thing as reducing the associated costs for those exceptions.
Thursday, August 25, 2016
#Pokémon Go and #Autism
Like most games that get super popular, Pokémon Go has a lot of autistic people interested and playing. We play games, you know. And enjoy having fun.
Like most activities that have autistic participants, Pokémon is getting attention from autism "experts" and professionals. They want to know why we play (uh, it's fun... why do neurotypical people play?) They want to know what it "helps with", since apparently everything autistic people do (everything we're allowed to do by our all-knowing and compassionate caretakers?) must "help with" (reduce) some aspect of our autism.
I am, of course, less than thrilled about the assumptions involved here. There are plenty of things I do for reasons that differ from why neurotypical people do them, but that's not so much in the area of games. It's more in the area of "I said words because I meant those words, but apparently neurotypical people say those words as code for something else and what do I do if what I actually mean is those words, why do you neurotypical folk need to ruin useful statements with your codes???"
So, why do I play Pokémon Go?
Well, it's fun.
Also, it gets neurotypical people socializing in more autistic ways, which makes it a heck of a lot easier for me to understand them and interact with them. Let's turn the usual social skills paradigm where we assume it's the autistic person socializing "wrong" on its head and make a super popular game that encourages people to socialize autistically, thanks.
Here's what I mean when I say that it encourages autistic socialization:
Like most activities that have autistic participants, Pokémon is getting attention from autism "experts" and professionals. They want to know why we play (uh, it's fun... why do neurotypical people play?) They want to know what it "helps with", since apparently everything autistic people do (everything we're allowed to do by our all-knowing and compassionate caretakers?) must "help with" (reduce) some aspect of our autism.
I am, of course, less than thrilled about the assumptions involved here. There are plenty of things I do for reasons that differ from why neurotypical people do them, but that's not so much in the area of games. It's more in the area of "I said words because I meant those words, but apparently neurotypical people say those words as code for something else and what do I do if what I actually mean is those words, why do you neurotypical folk need to ruin useful statements with your codes???"
So, why do I play Pokémon Go?
Well, it's fun.
Also, it gets neurotypical people socializing in more autistic ways, which makes it a heck of a lot easier for me to understand them and interact with them. Let's turn the usual social skills paradigm where we assume it's the autistic person socializing "wrong" on its head and make a super popular game that encourages people to socialize autistically, thanks.
Here's what I mean when I say that it encourages autistic socialization:
- This isn't random small talk. "Hi, there's an Eevee over here!" makes a perfectly acceptable introduction to a fellow Pokémon Go player. Or when you meet one at a gym, "What team?" Straight to the point.
- It's centered around a single shared interest. That interest is Pokémon (Go).
- Eye contact is not an expected thing on any side. This is centered around a game played on our phones or tablets, so it's completely expected and accepted that we are looking at our phones or tablets, not at the people we're talking too. Great!
- Pokémon was created by an autistic guy. He likes bugs. Why did you think "bug" was a type in Pokémon?
So let's turn that question around: Why do neurotypical people play Pokémon Go? What does it help them with? I welcome input from parents, professionals, and of course, those with neurotypicality themselves. But only when they are self-narrating zoo exhibits. I don't really think those with neurotypicality can speak to the general neurotypical experience :p
(And yes, that's what you sound like when you add a note about autistic contributors at the end of your calls for contributions.)
Tuesday, June 21, 2016
Alyssa Reads Uniquely Human: Wrap-Up
I read Uniquely Human, and I went through it chapter by chapter, plus all that material that's not in a chapter. At the end of it all, here are my thoughts:
- This book is still pathology paradigm/behaviorist model. It's just considering that there is, in fact, some rhyme or reason to the behavior and focusing on the cause of the behavior as a way to reduce it. (Same bad model, just using it to say better things.)
- The descriptions of how and why we act are definitely behaviorizing, or at best partially behaviorizing. See Disability in Kidlit here for the explanation of what I mean by that.
- For calling autistic people experts, he really doesn't pull much that's credited as being learned from "an autistic adult said this."
- What crediting of autistic adults happens leans very white, cisgender, heterosexual, educated, and middle to upper class.
- Even the chapter called "The Real Experts" has very little content that is what we say or how we say it. Most of it is anecdotes in which he shows our behavior.
- He occasionally conflates tantrums and meltdowns. There is, in fact, a difference.
- Dr. Prizant is far more trusting of therapies and professionals in general/by default than I can trust or endorse. He may have shared a parents quote about not being able to trust professionals as far as you can throw them, but his writing indicates that he himself does trust professionals.
- I do not even vaguely trust the reader (or really trust Dr. Prizant) on what the "successes" we celebrate are. The goals described read too much like "acting less autistic" (but by reducing anxiety!) in ways that conflate "acting autistic" with "showing distress in autistic-typical ways."
- This book minimizes some major problems: electric shock and other painful punishments are depicted as a thing of the past, Lovaas as one of the first autism experts (never mind that he's one of the people who used shock,) and similar.
- There are times where a trait he mentions is relevant and makes a "lack of social X" argument redundant or unneeded, but he makes the "lack of social X" argument anyways.
- One case here is a students refusal to complete an assignment that he can't make sense of being explained with not understanding that he should make an attempt anyways to please the teacher, rather than "Ok but this is so inaccessible that there is no attempt I can make."
- Also there's the bit where we have a communication disability, and we're pretty explicitly taught not to express discomfort or displeasure, but apparently our not communicating when things are bothering us is because we lack this social instinct?
- There is an overarching pattern where Dr. Prizant comes up with a good point but doesn't follow his own logic fully.
- He writes his dissertation on functions of echolalia (and does research on functions of scripting,) finding that they have all the same functions as spontaneous language, but then aims to reduce scripted speech. His SCERTS model privileges "spontaneous" speech over echolalic and scripted speech.
- He points out some issues with intervention "for autism" in the introduction but still supports plenty of things that are "for autism" later.
- He points out that "unpredictable behavior" usually means that the person describing or observing us doesn't understand the pattern, but still describes things as unpredictable.
- He points out that we might find different things challenging than neurotypical children. He misses that running out of gas faster under higher stress doesn't imply a lower threshold or a smaller tank.
- He argues against portraying autism as a checklist of behaviors, but then tends to start anecdotes about children by... listing behaviors.
- He talks about trauma but also says that our trauma and flashbacks are not PTSD for reasons that he never explains. (If it walks, talks, and quacks like PTSD... it's probably PTSD.)
- He points out that there are good days and bad days, that abilities aren't static. He still treats selective mutism as if it's definitely not a "can't" talk in the anecdotes where it is mentioned, because the person can talk. I can generally speak, but when I stop it's because I can't flipping talk. Though to be fair, if I were to have a conversation with this guy I'd probably type for reasons other than "can't speak."
At the end of it all, there aren't too many people I'd suggest the book for. I wouldn't give it to a parent whose kid was recently diagnosed and who hadn't learned to be all behaviorist yet. I wouldn't give it to someone who knew nothing about autism and knew it. I wouldn't give it to an autistic person, OMG NO WHY.
I would, however, consider suggesting it to an educator or professional (or maybe parent) who had already learned to view autism as a checklist of behaviors and deficits, and who I didn't think was going to stop doing that any time soon. Maybe. Still iffy because of essentially the difference between 1984 and Brave New World: Yes, only one of these is torturing people to control them, the other is quite a bit more subtle in its control and using what people like (along with many other signs of dystopia), but these are both dystopias. One gets into a wrestling match to force eye contact while the other holds a desired toy between the eyes to induce it. Both are pushing for a neurotypical performance at the end of the day. The first is obvious in its abuse, while the second... it's not as immediately and obviously traumatizing but that could make it harder for people to realize the problems and can lead to trauma that others won't believe even was trauma. Both are still dystopias.
For folks who'd like to go back and read my more specific thoughts, here's the rest of the series. Note that the part number within my reading is always 1 more than the chapter number because I started with everything not in a chapter.
I would, however, consider suggesting it to an educator or professional (or maybe parent) who had already learned to view autism as a checklist of behaviors and deficits, and who I didn't think was going to stop doing that any time soon. Maybe. Still iffy because of essentially the difference between 1984 and Brave New World: Yes, only one of these is torturing people to control them, the other is quite a bit more subtle in its control and using what people like (along with many other signs of dystopia), but these are both dystopias. One gets into a wrestling match to force eye contact while the other holds a desired toy between the eyes to induce it. Both are pushing for a neurotypical performance at the end of the day. The first is obvious in its abuse, while the second... it's not as immediately and obviously traumatizing but that could make it harder for people to realize the problems and can lead to trauma that others won't believe even was trauma. Both are still dystopias.
Dr.
Prizant is teaching people to make a nicer-seeming dystopia and call
it accepting autism. It's not neurodiversity, and it's not accepting
autism. It is sometimes doing things that make us more
comfortable and less anxious, but with the idea that this will make
us appear less autistic because autism gets conflated with autistic
ways of showing distress.
For folks who'd like to go back and read my more specific thoughts, here's the rest of the series. Note that the part number within my reading is always 1 more than the chapter number because I started with everything not in a chapter.
Thursday, June 16, 2016
Alyssa Reads Uniquely Human: Part 11
Still reading Uniquely Human. The series begins here, and the prior post in the series is here.
This chapter is about thinking about the future, cause we grow up and aren't static and such. In theory. To me it looks like four stories that share the similarity of "so we didn't know what was going to happen in adulthood, but adulthood did happen!" Which, just to be clear, is true of literally every child who survives to adulthood. No matter how much parents might think they can predict, and even if they're right about a good chunk of it, we don't actually know ahead of time what adulthood will be like. The future holds surprises for everyone.
Oh hey, a mention of the fact that autistic people have developmental stages and that autism is not some sort of stasis! (Autistic development: it's a thing.) And I like the quote from an autistic adult here, too. (Though I'm fairly sure this one is a case where he used "on the spectrum" to avoid "autistic" for a person who prefers some variety of identity-first language...)
Then we get four stories. In the first: conflation of tantrum and meltdowns, calling autistic traits red flags of something amiss (despite the statement that we shouldn't be looking at autism as a collection of behavioral deficits), personality being portrayed as in spite of disability (wuuuut), and some "will never" assumptions. Seems like eventually a pretty decent position, though we only get to find out directly what the parents think of it.
In the second: Oh, hey, a parent that goes straight to fear, not so much of, what is kid going to be like, but "What are they going to do to him?" (193). I approve. The things they do to us (the things some parents seem to want eventually done to their kids, once they grow up) are actually pretty terrifying, because as a society we're pretty terrible about disability. Matt's definitely still being portrayed in behavioral terms, terms where the behavior makes sense, but still in terms of behavior. Also he's apparently never been told he's autistic? The heck? I mean, yes, you want to interact with the person in front of you and not just the diagnostic label, but that doesn't make it cool to not tell the person about their own label. FFS, you should tell your kids they're autistic. They've apparently given him a good bit of the surrounding info, but there are certain words that it's important to have access to...
Third story: Immediate warning for use your words type scary stuff, yikes! Recognition that it wasn't OK, at least, but I'm shaking after reading about it. Remember folks: If you don't use your words you won't be indistinguishable. (But also remember how terrible of a goal indistinguishability from one's peers is, who else is forced to have "average" as their highest aspiration?) So we need an explanation of why parents would not mourn for an autism diagnosis, apparently? Mourning is some sort of default and not doing it, or only doing it briefly, is the atypical thing that needs to be explained? Not cool. Not cool. It seems they eventually figured out that trying to get rid of "autistic-looking" stuff for its own sake is a bad idea and that when we act autistic it's because we are autistic and this stuff is useful to us.
Fourth story: I don't actually have that many comments. A good chunk of the story has already been told in other chapters, just in different pieces. The intro is just another "oh no!" moment, and the story of dealing with schools that don't get it is familiar. Paying attention to a talent or interest when it appears, as they did, is important. I hope they got his permission to share this story, since he's definitely identifiable.
Part 12 here!
This chapter is about thinking about the future, cause we grow up and aren't static and such. In theory. To me it looks like four stories that share the similarity of "so we didn't know what was going to happen in adulthood, but adulthood did happen!" Which, just to be clear, is true of literally every child who survives to adulthood. No matter how much parents might think they can predict, and even if they're right about a good chunk of it, we don't actually know ahead of time what adulthood will be like. The future holds surprises for everyone.
Oh hey, a mention of the fact that autistic people have developmental stages and that autism is not some sort of stasis! (Autistic development: it's a thing.) And I like the quote from an autistic adult here, too. (Though I'm fairly sure this one is a case where he used "on the spectrum" to avoid "autistic" for a person who prefers some variety of identity-first language...)
Then we get four stories. In the first: conflation of tantrum and meltdowns, calling autistic traits red flags of something amiss (despite the statement that we shouldn't be looking at autism as a collection of behavioral deficits), personality being portrayed as in spite of disability (wuuuut), and some "will never" assumptions. Seems like eventually a pretty decent position, though we only get to find out directly what the parents think of it.
In the second: Oh, hey, a parent that goes straight to fear, not so much of, what is kid going to be like, but "What are they going to do to him?" (193). I approve. The things they do to us (the things some parents seem to want eventually done to their kids, once they grow up) are actually pretty terrifying, because as a society we're pretty terrible about disability. Matt's definitely still being portrayed in behavioral terms, terms where the behavior makes sense, but still in terms of behavior. Also he's apparently never been told he's autistic? The heck? I mean, yes, you want to interact with the person in front of you and not just the diagnostic label, but that doesn't make it cool to not tell the person about their own label. FFS, you should tell your kids they're autistic. They've apparently given him a good bit of the surrounding info, but there are certain words that it's important to have access to...
Third story: Immediate warning for use your words type scary stuff, yikes! Recognition that it wasn't OK, at least, but I'm shaking after reading about it. Remember folks: If you don't use your words you won't be indistinguishable. (But also remember how terrible of a goal indistinguishability from one's peers is, who else is forced to have "average" as their highest aspiration?) So we need an explanation of why parents would not mourn for an autism diagnosis, apparently? Mourning is some sort of default and not doing it, or only doing it briefly, is the atypical thing that needs to be explained? Not cool. Not cool. It seems they eventually figured out that trying to get rid of "autistic-looking" stuff for its own sake is a bad idea and that when we act autistic it's because we are autistic and this stuff is useful to us.
Fourth story: I don't actually have that many comments. A good chunk of the story has already been told in other chapters, just in different pieces. The intro is just another "oh no!" moment, and the story of dealing with schools that don't get it is familiar. Paying attention to a talent or interest when it appears, as they did, is important. I hope they got his permission to share this story, since he's definitely identifiable.
Part 12 here!
Tuesday, June 14, 2016
Alyssa Reads Uniquely Human: Part 9
Still reading Uniquely Human. Please let it be over soon. (This is chapter 8. There are 12 chapters. I get to The Real Experts chapter after this.) The prior post in the series can be found here, and the series begins here.
Here I say that you are flat wrong, Dr. Prizant: "All parents aim to be the best providers, the most understanding caregivers, and the greatest supports for their children." (157). No. You are wrong. Plenty of parents see their children as accessories or extensions of themselves, and plenty of parents draw on their children for support rather than the other way around or even the give and take that could be appropriate as a child gets older. Don't pretend that all parents are trying to be the best for their children. Trying to appear the best to outsiders is not the same thing. Autistic adults can tell you all about the martyr parent trope, because it's a thing, and wanting to get as much attention as possible for the extremes your kid reaches is a thing whether or not the parent cares if the kids extreme was good or bad. Plus the general issues re: child abuse and erasure that aren't specific to disability. Stoppit.
Now, a parent turning to this book probably is trying to be all those things. Doesn't make this an OK statement.
I won't argue with the statement that "it can be more difficult for a parent to attend to a child's needs when the child is difficult to read" (158). I will point out that that's not, strictly speaking, an autism thing. Autistic parents often have more trouble reading their neurotypical children and less trouble reading their autistic children. Neurotypical parents often have more trouble reading their autistic children and less trouble reading their neurotypical children. That's, at least partially, a cross-neurotype issue, similar to a cross-cultural issue.
I actually do agree that community can be useful for parents, because community can be useful for basically everyone. I think parents need to be very careful what kinds of communities they seek, because martyrhood seems to be contagious and so does dangerous quackery. I'm not convinced I'm cool with a half-full vs. half-empty metaphor with autism, though if you wanted to tell me my cup is filled with a different beverage... (please not carbonated, please not carbonated...)
I am definitely not cool with the primary problem presented re: "direst prognoses: what the child will never do or accomplish." The presented problem is that it's not tender and that it can affect perceptions of the kid. The frankly bigger problem? We're talking about what a child will supposedly never be able to do based on their abilities in childhood, when we already know for a fact they're disabled in a way that means atypical developmental trajectories are a thing. As in, predicting what an autistic kid will never be able to do works even less well than predicting what a neurotypical child of the same age will never be able to do. It's flat wrong. (Autistic development is a thing!)
From the story given for "Insist on Respect" I think primarily he's saying it's important to respect the parents. And when it comes to parents who really are trying for the best interests of the kid? Sure. What about respecting the autistic person? Seriously, the ways these stories are shared (and with enough info that one of my commenters has figured likely real names for quite a few, since the first names don't seem to be changed...) is not consistently respecting the privacy and dignity of the people being written about. I don't care that the parents think trying to pee in the display toilet is a funny story, I care what the kid thinks of it being shared. (This one hasn't got a name attached, thankfully.) Like, yes, these parents are saying they want to be respected as parents and that they want their children to be respected, but just like I don't trust professionals as far as I can throw them, I don't trust parents of autistic kids to trust what is and isn't respectful of those kids as far as I can throw them. Not while they're making public the stories and videos that they do.
OH FOR PETE'S SAKE. WHY ARE YOU CONFLATING TANTRUM AND MELTDOWN. You should know better. You should know better. You should really know better stop stop stop. Also, talk about listing "deficit" behaviors that a parent gets to stop through, apparently theater? I thought you said you didn't think we should describe autism as a list of deficit behaviors? Follow you own logic.
Also I gotta say I mistrust folks following the "gratification and inspiration that comes from helping others." (172). Inspiration porn is a thing. Also, the state director for Best Buddies was all inspirational and such, and she was also the most condescending of anyone I ever interacted with by typing in person. And special education teachers? There are reasons that I don't trust currently practicing special educators, including the fact that they seem to think acting "less autistic" is a good goal. Come to think of it, that's the same reason I don't trust clinicians, including Dr. Prizant, who despite a lot of nice words on top, is totally still writing about "emerging" and reducing scripts and other things that are at best, code for acting less autistic rather than saying it straight out.
Part 10 here!
Here I say that you are flat wrong, Dr. Prizant: "All parents aim to be the best providers, the most understanding caregivers, and the greatest supports for their children." (157). No. You are wrong. Plenty of parents see their children as accessories or extensions of themselves, and plenty of parents draw on their children for support rather than the other way around or even the give and take that could be appropriate as a child gets older. Don't pretend that all parents are trying to be the best for their children. Trying to appear the best to outsiders is not the same thing. Autistic adults can tell you all about the martyr parent trope, because it's a thing, and wanting to get as much attention as possible for the extremes your kid reaches is a thing whether or not the parent cares if the kids extreme was good or bad. Plus the general issues re: child abuse and erasure that aren't specific to disability. Stoppit.
Now, a parent turning to this book probably is trying to be all those things. Doesn't make this an OK statement.
I won't argue with the statement that "it can be more difficult for a parent to attend to a child's needs when the child is difficult to read" (158). I will point out that that's not, strictly speaking, an autism thing. Autistic parents often have more trouble reading their neurotypical children and less trouble reading their autistic children. Neurotypical parents often have more trouble reading their autistic children and less trouble reading their neurotypical children. That's, at least partially, a cross-neurotype issue, similar to a cross-cultural issue.
I actually do agree that community can be useful for parents, because community can be useful for basically everyone. I think parents need to be very careful what kinds of communities they seek, because martyrhood seems to be contagious and so does dangerous quackery. I'm not convinced I'm cool with a half-full vs. half-empty metaphor with autism, though if you wanted to tell me my cup is filled with a different beverage... (please not carbonated, please not carbonated...)
I am definitely not cool with the primary problem presented re: "direst prognoses: what the child will never do or accomplish." The presented problem is that it's not tender and that it can affect perceptions of the kid. The frankly bigger problem? We're talking about what a child will supposedly never be able to do based on their abilities in childhood, when we already know for a fact they're disabled in a way that means atypical developmental trajectories are a thing. As in, predicting what an autistic kid will never be able to do works even less well than predicting what a neurotypical child of the same age will never be able to do. It's flat wrong. (Autistic development is a thing!)
From the story given for "Insist on Respect" I think primarily he's saying it's important to respect the parents. And when it comes to parents who really are trying for the best interests of the kid? Sure. What about respecting the autistic person? Seriously, the ways these stories are shared (and with enough info that one of my commenters has figured likely real names for quite a few, since the first names don't seem to be changed...) is not consistently respecting the privacy and dignity of the people being written about. I don't care that the parents think trying to pee in the display toilet is a funny story, I care what the kid thinks of it being shared. (This one hasn't got a name attached, thankfully.) Like, yes, these parents are saying they want to be respected as parents and that they want their children to be respected, but just like I don't trust professionals as far as I can throw them, I don't trust parents of autistic kids to trust what is and isn't respectful of those kids as far as I can throw them. Not while they're making public the stories and videos that they do.
OH FOR PETE'S SAKE. WHY ARE YOU CONFLATING TANTRUM AND MELTDOWN. You should know better. You should know better. You should really know better stop stop stop. Also, talk about listing "deficit" behaviors that a parent gets to stop through, apparently theater? I thought you said you didn't think we should describe autism as a list of deficit behaviors? Follow you own logic.
Also I gotta say I mistrust folks following the "gratification and inspiration that comes from helping others." (172). Inspiration porn is a thing. Also, the state director for Best Buddies was all inspirational and such, and she was also the most condescending of anyone I ever interacted with by typing in person. And special education teachers? There are reasons that I don't trust currently practicing special educators, including the fact that they seem to think acting "less autistic" is a good goal. Come to think of it, that's the same reason I don't trust clinicians, including Dr. Prizant, who despite a lot of nice words on top, is totally still writing about "emerging" and reducing scripts and other things that are at best, code for acting less autistic rather than saying it straight out.
Part 10 here!
Monday, June 13, 2016
Alyssa Reads Uniquely Human: Part 8
Still reading Uniquely Human. Still going blarglefeh at behaviorizing descriptions of autistic folks, even when the stuff we're doing is stuff that he's acknowledging has use. The prior post in the series is here, and the start here.
Within the book, I'm now on what he calls Part 2: Living with Autism. I am not even going to try to resist the snark option there. I have a cat named autism and she is soooo hard to live with. And when I was asleep, my autism got away and shaved the dog. Disembodied autism is not a thing. Disembodied autism is not a thing. Disembodied autism is not a thing!
Teachers and aides that we feel safe around or who even help us feel safe when other stuff is going wrong, however, are a thing. One of the teachers who's been like that for me was even a formal special educator. (Emphasis on former here.) She was my residence director in Tianjin, and she was the only teacher or administrator there who didn't panic when I melted down or decide that the meltdowns were tantrums. (She was apparently worried the time that I melted down, was alone, and she was several hours away over a weekend. Which is reasonable, since she had no knowledge of how safe I was alone during/after a bad meltdown. Pretty darn safe, by the way.) I've had a couple others at college, generally mathematics or engineering professors. As in, absolutely not trained in any "therapy" or "behavioral management" stuff "for autism."
What do all these people have in common? They're able and willing to notice both the things that I can do myself and the things I need support with, both my abilities and my needs, at the same time. They're aware that neither cancels out the other.
Concrete example: My ability to speak gives out on me pretty regularly. The first time it happens in front of a given person can be scary, because I don't really know how they're going to react. I'm also a graduate student. My ability to speak gave out on me during a graduate math class with a professor who didn't yet know that could happen, right after he asked me a direct question. (Timing!) I was able to communicate that I wanted a whiteboard marker (standing up and reaching for a marker is reasonably easy to notice, but I couldn't reach it so he asked if I wanted it and handed it to me after I nodded.) I started writing my answer instead. I wound up writing a lot in that class, and the professor was totally able to recognize both that the writing instead of talking was sometimes needed and that I was capable of learning the material. (No, I don't think that should be unusual. But it is unusual.)
I respect that he was willing to include a parent saying "I just want to tell all of you who are parents of young children that you can't trust professionals as far as you can throw them" (138), considering that he is a professional. I've got to wonder how he'd react to autistic adults similarly not trusting professionals as far as we can throw them, and how he'd react when he is the professional we're not trusting, but I've got no evidence in any direction there.
As far as the traits or instincts he's written for who tends to "get It" go:
Within the book, I'm now on what he calls Part 2: Living with Autism. I am not even going to try to resist the snark option there. I have a cat named autism and she is soooo hard to live with. And when I was asleep, my autism got away and shaved the dog. Disembodied autism is not a thing. Disembodied autism is not a thing. Disembodied autism is not a thing!
Teachers and aides that we feel safe around or who even help us feel safe when other stuff is going wrong, however, are a thing. One of the teachers who's been like that for me was even a formal special educator. (Emphasis on former here.) She was my residence director in Tianjin, and she was the only teacher or administrator there who didn't panic when I melted down or decide that the meltdowns were tantrums. (She was apparently worried the time that I melted down, was alone, and she was several hours away over a weekend. Which is reasonable, since she had no knowledge of how safe I was alone during/after a bad meltdown. Pretty darn safe, by the way.) I've had a couple others at college, generally mathematics or engineering professors. As in, absolutely not trained in any "therapy" or "behavioral management" stuff "for autism."
What do all these people have in common? They're able and willing to notice both the things that I can do myself and the things I need support with, both my abilities and my needs, at the same time. They're aware that neither cancels out the other.
Concrete example: My ability to speak gives out on me pretty regularly. The first time it happens in front of a given person can be scary, because I don't really know how they're going to react. I'm also a graduate student. My ability to speak gave out on me during a graduate math class with a professor who didn't yet know that could happen, right after he asked me a direct question. (Timing!) I was able to communicate that I wanted a whiteboard marker (standing up and reaching for a marker is reasonably easy to notice, but I couldn't reach it so he asked if I wanted it and handed it to me after I nodded.) I started writing my answer instead. I wound up writing a lot in that class, and the professor was totally able to recognize both that the writing instead of talking was sometimes needed and that I was capable of learning the material. (No, I don't think that should be unusual. But it is unusual.)
I respect that he was willing to include a parent saying "I just want to tell all of you who are parents of young children that you can't trust professionals as far as you can throw them" (138), considering that he is a professional. I've got to wonder how he'd react to autistic adults similarly not trusting professionals as far as we can throw them, and how he'd react when he is the professional we're not trusting, but I've got no evidence in any direction there.
As far as the traits or instincts he's written for who tends to "get It" go:
- I'm cool with the way he describes empathy but still twitch at the word because of Simon Baron-Cohen and Theory of Mind associations.
- I feel like the question re: stimming is likely to be for the purpose of reducing stimming by way of reducing the perceived causes, which isn't cool when the stimming is how we're showing happiness or excitement. (And folks who think of stimming as negative/as purely a reaction seem likely to not realize the difference between happy stimming and not-happy stimming.)
- Oh hey recognition that we have body language and that some people (people who "get It" as a subset of this group) can read out body language. That's cool.
- Yay humor! (Make really really absolutely sure that the humor is considered respectful by the autistic person, not just by the family or the professionals we can't trust as far as we can throw them, k thanks.)
- Yay pointing out that strict behavior plans and therapy programs can cause harm by not reacting to the autistic person's reasons for acting.
I think I like this principal, who "understood that it wasn't going to help this particular boy for yet another adult to tell him that he was behaving poorly or that he needed to settle down." (142). Does that help anyone, really?
I also like pointing out that professionals can cause problems through stubbornness and inflexibility. (HEY autistic folks aren't the only ones who can be stubborn. Also, trying to out-stubborn an autistic person is probably not going to go well...)
The problems he points out as far as how people fail to "get It" are pretty good. I'd like to add that it's not just the parents hopes and dreams they are often insensitive to. However insensitive to those goals educators can be, they tend to recognize that those goals exist. The idea that we, the autistic students, could have our own goals that are not the same as those on the IEP or those of our parents seems not to register as even a possibility. Remember whose life this really is. I'm not living my mom's life or my dad's life or my teacher's life. I'm living mine, and at the end of the day it's my hopes and dreams that matter. Not my parents hopes and dreams for me. That is: remember our perspectives and shoes.
Continue to part 9 here.
Continue to part 9 here.
Thursday, June 9, 2016
Alyssa Reads Uniquely Human: Part 6
I continue to read Uniquely Human. I feel like I am repeating myself a lot as I do so. The prior installation in the series can be found here, and the start of the series is here.
Chapter 5 (parts and chapters are 1 off from each other because I did the front and back material first) is titled Emotional Memory. Heads up for discussions of PTSD and of flashbacks. Heads up also that he says this isn't the same as PTSD without really saying why he thinks it isn't.
When Dr. Prizant writes, "Julio suddenly found himself recalling his moments of panic and sharp pain, as if he were experiencing a flashback" (95) I have to wonder how much it's an "as if." A lot of autistic people have PTSD. A lot of autistic people have flashbacks. Some of us have fully immersive memories even when the memory isn't necessarily traumatic (not me, no minds eye over here.) To be clear, I'm not saying Dr. Prizant is wrong to notice the strength of memories. I'm saying that our memories can be even stronger than he's writing.
These memories have effects. I think that the descriptions in "How memories explain behavior" are useful, though there's always that behaviorizing thing. Explanations are given, but it's external detective reasons (he talks explicitly about using detective work to find the explanations) rather than internal motivations, and there's generally an assumption that overcoming whatever the traumatic memory was is a goal. (I think it often is, but sometimes the actual solution is avoid the trigger.)
I like how he discusses that "Anything can be a trigger."
I am very confused by how he thinks "Good job!" and similar praise would be a surprising trigger for anyone who's ever dealt with an ABA or discrete trial type therapist. That's something most anyone who really listens to autistic adults would know. (Unless he's giving it as an example that parents or educators might find surprising? He seemed personally confused as well, though.)
He then turns to PTSD. He says there are differences between what these students are experiencing and PTSD (sometimes I guess) but that there is also overlap (like a lot of autistic adults actually having PTSD!) I guess the "rarely prove as debilitating or intrusive as PTSD can be"(102) leaves space for emotional memory stuff to sometimes be as bad as PTSD, but no mention of the fact that some of us literally actually have PTSD. Which would totally explain why PTSD research is useful for understanding our issues.
Oh hey a mention of avoiding the triggers as a strategy.
Looking at Amy's story, I don't get how the option of going to the theme park without going on rides isn't forcing her to go? It's still making her go to the theme park even if it's not making her go on the rides...
The idea of explaining exactly what is going on and what will happen so that we know what's coming is a good one.
Not calling things "work" -- I get the logic there, but there are also problems! There is, in fact, a difference between work and play, and a difference between free play and therapy. Not giving someone the words to communicate those differences isn't a good strategy for getting them to accept the one of the two that they dislike. (It's going to contaminate the one they like.)
Making a life that has positive memories in it is also a good idea. (No, really, he suggests this in the closing for the chapter.) It's important to keep in mind what we're going to find positive and fun because it's often not what parents and professionals would expect.
You can find part 7 here.
Chapter 5 (parts and chapters are 1 off from each other because I did the front and back material first) is titled Emotional Memory. Heads up for discussions of PTSD and of flashbacks. Heads up also that he says this isn't the same as PTSD without really saying why he thinks it isn't.
When Dr. Prizant writes, "Julio suddenly found himself recalling his moments of panic and sharp pain, as if he were experiencing a flashback" (95) I have to wonder how much it's an "as if." A lot of autistic people have PTSD. A lot of autistic people have flashbacks. Some of us have fully immersive memories even when the memory isn't necessarily traumatic (not me, no minds eye over here.) To be clear, I'm not saying Dr. Prizant is wrong to notice the strength of memories. I'm saying that our memories can be even stronger than he's writing.
These memories have effects. I think that the descriptions in "How memories explain behavior" are useful, though there's always that behaviorizing thing. Explanations are given, but it's external detective reasons (he talks explicitly about using detective work to find the explanations) rather than internal motivations, and there's generally an assumption that overcoming whatever the traumatic memory was is a goal. (I think it often is, but sometimes the actual solution is avoid the trigger.)
I like how he discusses that "Anything can be a trigger."
I am very confused by how he thinks "Good job!" and similar praise would be a surprising trigger for anyone who's ever dealt with an ABA or discrete trial type therapist. That's something most anyone who really listens to autistic adults would know. (Unless he's giving it as an example that parents or educators might find surprising? He seemed personally confused as well, though.)
He then turns to PTSD. He says there are differences between what these students are experiencing and PTSD (sometimes I guess) but that there is also overlap (like a lot of autistic adults actually having PTSD!) I guess the "rarely prove as debilitating or intrusive as PTSD can be"(102) leaves space for emotional memory stuff to sometimes be as bad as PTSD, but no mention of the fact that some of us literally actually have PTSD. Which would totally explain why PTSD research is useful for understanding our issues.
Oh hey a mention of avoiding the triggers as a strategy.
Looking at Amy's story, I don't get how the option of going to the theme park without going on rides isn't forcing her to go? It's still making her go to the theme park even if it's not making her go on the rides...
The idea of explaining exactly what is going on and what will happen so that we know what's coming is a good one.
Not calling things "work" -- I get the logic there, but there are also problems! There is, in fact, a difference between work and play, and a difference between free play and therapy. Not giving someone the words to communicate those differences isn't a good strategy for getting them to accept the one of the two that they dislike. (It's going to contaminate the one they like.)
Making a life that has positive memories in it is also a good idea. (No, really, he suggests this in the closing for the chapter.) It's important to keep in mind what we're going to find positive and fun because it's often not what parents and professionals would expect.
You can find part 7 here.
Wednesday, June 8, 2016
Alyssa Reads Uniquely Human: Part 5
I'm reading Uniquely Human. The start of the series is here, and the previous part here. I've been loving the comments so far -- very informative! Please keep telling me things :D
Somehow the description of Derek's internalizing Dr. Prizant's pattern/rhythym of September visits rather than October ones is reminding me of the description of David's rules in, well, Rules: Derek has an idea of how the world should work and that's a rule, but we don't get to see why it's a rule. It's just a rule. (And David's Rules were given as an example of behaviorizing depictions in that Disability in Kidlit article y'all should really read. Just pointing that out.)
I raise my eyebrow at the idea that autism is a disability of trust. I raise that eyebrow very high, figuratively. Literally I don't raise it much because my eyebrows remain on my face and my forehead isn't that big.
The idea that we can't always trust our bodies I buy -- I can trust that if my body is giving me information, then the information is good, but there's a lot of information I don't consistently get. Am I hungry? Cold? Tired? I don't know. I've broken bones and not known it. This isn't quite the same as the mistrust that Dr. Prizant is describing: he's describing not understanding what minor illnesses like colds are (could it be that no one bothered to explain to us that these things exist and are minor and will pass? Also, look back at the echolalia chapter for the "Do-ahhh" example, kid knew full well what was wrong even if he couldn't say it in the standard words.)
I think "routine changes and unexpected things are hard" is getting framed as being about trust in the world, which, I can kind of get, but I don't fully agree with. A lot of autistic people have funky circadian rhythms, and I know the way mine is funky is that it is tied very firmly to the sun. That is, I don't actually care what the clock is doing for the purpose of determining when I am alert vs sleepy and when I get hungry. I care what the sun is doing. My troubles (or lack thereof this year, when I was able to shift most of my schedule a clock hour when DST started) with daylight savings aren't about trusting when things happen. They're about "uh I don't care what the clock says, I wake up when the sun rises and then I want food" and similar mismatches caused by following the sun.
Similarly, while trust lost in the world could work, approximately, for the other example given, it's not the only explanation possible and just saying "trust in the world" isn't satisfying. Plus the descriptions, even with some level of "trust in the world" explanation given, are at best mostly behaviorizing with a touch of humanizing in there.
Oh god I think the trust in others part is going the Theory of Mind route, though without using those words. Apparently most people are hardwired to be able to predict the behavior of others and read body language and such. Which others? Others like themselves. Most people can't read my body language for beans. If this isn't Theory of Mind itself, it's got the same rhetorical issue: theory of whose mind?
The constant vigilance related to this trouble predicting people (who are often terrible to us!) is dead-on, though. Oh, my goodness, are people exhausting to deal with, because they're unpredictable and don't think they are.
Fear and anxiety are definitely also things. (Holy wow do I have anxiety. A lot of folks think I don't get scared easily because they don't recognize my body language well enough to tell when I'm scared and because I don't make that much effort to avoid the things that scare me (too many things!) plus I definitely have Gryffindor tendencies anyways. They're wrong. Sensory issues, people having actually been terrible (still no mention of how much more frequently we are victims of abuse by parents or teachers, which would totally cause disregulation and fear) , unpredictable animals, and more.
I like how Dr. Prizant mentioned that things other people might like could be scary for autistic people. I also like that he realized (at least in the case described) that forcing a student to participate in the scary thing would be a bad idea, and said so (plus why!)
I like how he points out that when we try to control situations, there are actual good reasons we might try to do so! Pointing out that professionals often try to seize control is also handy, but can we talk a little bit more about how much of autism therapy is about the therapist being rigid and controlling? Because is it ever!
I know "selective mutism" (or apparently "elective mutism") is the term used, but ugh. As someone who loses speech, and not just from anxiety, I really, really hate descriptors that imply I am choosing to have speech go kaput on me. (Also the kid may well have been situationally not capable of speech in addition to sometimes choosing not to speak. This is a thing that happens.)
The bit on how children exert control is definitely behaviorizing in the depictions. Since the birthday party is for Jose, not sure why the parents and therapists are so stubborn and rigid in their insistence that it be planned their way, as in, expanded beyond the group Jose originally said he wanted to invite :p.
The advice for building trust seems OK on the surface though I don't pretend to trust the ways it'll be interpreted and used by parents and educators. The celebrated "successes" will likely be times where an autistic person acted in neurotypically expected ways. (As a contrast, and illustrate to what else success could mean, one of my big goals this year was switching over to writing or typing as soon as doing so would be more efficient than speaking, rather than waiting until speech was entirely gone.) The choices offered are likely to be superficial things like which sandwich we want or which approved activity we want rather than the choice to not participate in any of the social options or generally to reject all the suggestions and come up with something entirely different. ("When do you want to practice eye contact?" Um, literally never, thanks.) Which isn't a problem with the advice, but it is a problem that I want to warn parents and educators about.
You can find part 6 here.
Somehow the description of Derek's internalizing Dr. Prizant's pattern/rhythym of September visits rather than October ones is reminding me of the description of David's rules in, well, Rules: Derek has an idea of how the world should work and that's a rule, but we don't get to see why it's a rule. It's just a rule. (And David's Rules were given as an example of behaviorizing depictions in that Disability in Kidlit article y'all should really read. Just pointing that out.)
I raise my eyebrow at the idea that autism is a disability of trust. I raise that eyebrow very high, figuratively. Literally I don't raise it much because my eyebrows remain on my face and my forehead isn't that big.
The idea that we can't always trust our bodies I buy -- I can trust that if my body is giving me information, then the information is good, but there's a lot of information I don't consistently get. Am I hungry? Cold? Tired? I don't know. I've broken bones and not known it. This isn't quite the same as the mistrust that Dr. Prizant is describing: he's describing not understanding what minor illnesses like colds are (could it be that no one bothered to explain to us that these things exist and are minor and will pass? Also, look back at the echolalia chapter for the "Do-ahhh" example, kid knew full well what was wrong even if he couldn't say it in the standard words.)
I think "routine changes and unexpected things are hard" is getting framed as being about trust in the world, which, I can kind of get, but I don't fully agree with. A lot of autistic people have funky circadian rhythms, and I know the way mine is funky is that it is tied very firmly to the sun. That is, I don't actually care what the clock is doing for the purpose of determining when I am alert vs sleepy and when I get hungry. I care what the sun is doing. My troubles (or lack thereof this year, when I was able to shift most of my schedule a clock hour when DST started) with daylight savings aren't about trusting when things happen. They're about "uh I don't care what the clock says, I wake up when the sun rises and then I want food" and similar mismatches caused by following the sun.
Similarly, while trust lost in the world could work, approximately, for the other example given, it's not the only explanation possible and just saying "trust in the world" isn't satisfying. Plus the descriptions, even with some level of "trust in the world" explanation given, are at best mostly behaviorizing with a touch of humanizing in there.
Oh god I think the trust in others part is going the Theory of Mind route, though without using those words. Apparently most people are hardwired to be able to predict the behavior of others and read body language and such. Which others? Others like themselves. Most people can't read my body language for beans. If this isn't Theory of Mind itself, it's got the same rhetorical issue: theory of whose mind?
The constant vigilance related to this trouble predicting people (who are often terrible to us!) is dead-on, though. Oh, my goodness, are people exhausting to deal with, because they're unpredictable and don't think they are.
Fear and anxiety are definitely also things. (Holy wow do I have anxiety. A lot of folks think I don't get scared easily because they don't recognize my body language well enough to tell when I'm scared and because I don't make that much effort to avoid the things that scare me (too many things!) plus I definitely have Gryffindor tendencies anyways. They're wrong. Sensory issues, people having actually been terrible (still no mention of how much more frequently we are victims of abuse by parents or teachers, which would totally cause disregulation and fear) , unpredictable animals, and more.
I like how Dr. Prizant mentioned that things other people might like could be scary for autistic people. I also like that he realized (at least in the case described) that forcing a student to participate in the scary thing would be a bad idea, and said so (plus why!)
I like how he points out that when we try to control situations, there are actual good reasons we might try to do so! Pointing out that professionals often try to seize control is also handy, but can we talk a little bit more about how much of autism therapy is about the therapist being rigid and controlling? Because is it ever!
I know "selective mutism" (or apparently "elective mutism") is the term used, but ugh. As someone who loses speech, and not just from anxiety, I really, really hate descriptors that imply I am choosing to have speech go kaput on me. (Also the kid may well have been situationally not capable of speech in addition to sometimes choosing not to speak. This is a thing that happens.)
The bit on how children exert control is definitely behaviorizing in the depictions. Since the birthday party is for Jose, not sure why the parents and therapists are so stubborn and rigid in their insistence that it be planned their way, as in, expanded beyond the group Jose originally said he wanted to invite :p.
By persistently giving the message "You must change," we are inadvertently communicating "You're not getting it right. You're screwing up." (90).Inadvertently? Inadvertently?! Folks, if y'all can't figure out that telling us constantly to change everything about ourselves is telling us not just that we aren't "getting it right" but that we are inherently wrong, then we are not the ones lacking in empathy here unholy pancakes what even is this. You don't get to do this stuff and then claim it was an accident. (Plus I remember Lovaas, there's the pieces but the therapist needs to build the person?)
The advice for building trust seems OK on the surface though I don't pretend to trust the ways it'll be interpreted and used by parents and educators. The celebrated "successes" will likely be times where an autistic person acted in neurotypically expected ways. (As a contrast, and illustrate to what else success could mean, one of my big goals this year was switching over to writing or typing as soon as doing so would be more efficient than speaking, rather than waiting until speech was entirely gone.) The choices offered are likely to be superficial things like which sandwich we want or which approved activity we want rather than the choice to not participate in any of the social options or generally to reject all the suggestions and come up with something entirely different. ("When do you want to practice eye contact?" Um, literally never, thanks.) Which isn't a problem with the advice, but it is a problem that I want to warn parents and educators about.
You can find part 6 here.
Tuesday, June 7, 2016
Alyssa Reads Uniquely Human: Part 4
The saga continues! Part 3 is here, and if you want to go back to the beginning, that's here.
Chapter 3 is titled "Enthusiasms."
I feel a bit odd about the listing of "special" interests, here called enthusiasms, though it's mentioned that many call them "obsessions." (I tend to call my own "Autistic obsessions" but I'm the kind of twit who throws themself into a wall hard enough to shake the stage to protest the idea that indistinguishability/loss of diagnosis is an optimal outcome so take that with a grain of salt.) I've never felt weird about autistic people listing the interests themselves, which is fairly common: there's an entire Tumblr blog dedicated to sharing our interests! I think part of the difference is that when we do it, we get to explain how the interest makes us feel and why we have it and how we expressed it, and here it's just a list. Like in David's article for Knots. (You need to make an account to read the article online, but it is free.) I think that extra detail makes the difference for me between behaviorizing and humanizing when we describe the interest.
I like how Dr. Prizant points out that our interests are a source of, well, interest, plus happiness, and that this is on its own an argument against discouraging them. Yes thank you we have internal thoughts and feelings and what makes us happy matters on its own merit. Glad you pointed that out.
I also like the example of how a teacher was able to use a students enthusiasm in order to design an alternate assignment involving reading and writing that he completed happily because it fit the interest. I like how he points out that most people have interests and hobbies (and admits that we tend to get more intense in ours, because we do, but it's not the act of having an interest that's autism-specific.)
There's definitely a problem with the idea of "splinter skills" or "savant skills" though, in dividing us up into the parts you find competent or valuable and the parts you find worthless, and frankly a problem of applying improper standards when you think the neuronormative "overall profile" or "developmental level" is going to be a useful measure for us to have abilities or support needs that stand out from a "profile" we didn't really fit anyways. I say this as someone who hasn't had a single coherent developmental level (as defined neurotypically) since I was about five months old. Possibly longer. Doesn't mean I'm a savant or have splinter skills. It means autistic development is what happens here, rather than accelerated or delayed neurotypical development.
The "Remarkable" tales of passion are stories with happy endings that come from having encouraged, supported, accepted, and sometimes taken advantage of our interests, which is cool. The accounts definitely lean behaviorizing rather than humanizing (if you haven't read the behaviorizing and humanizing link yet, it's to Disability in Kidlit and the idea applies just as well to describing real autistic people as it does to describing autistic characters.)
The use of an interest, bringing supplies to education meetings so the student can engage with the meeting when they want and engage with their interest when they'd rather do that, is a good idea, and since involving students in their own education is important, I really like that idea.
He does address times when an interest can get us into trouble -- the key is when pursuing an interest could violate someone else's boundaries/consent, we don't get to do that. (He doesn't put it in those words, but it is the common thread between the examples given.) Which is legitimate.
Teaching time and place can be useful, but I'd like to add one more piece: supporting us in our choice, if we make it, to spend most of our time in the places where our special interests are accepted and are how we connect with people anyways. In autistic spaces, taking turns sharing lots of information about our interests is considered social engagement. (The taking turns so that we all get to do it is part of what's great about it.) Plus we can find folks with the same interest. The other thing is that many interests will have clubs or interest groups: heck yes we may want to join those! Arranging to spend more of our time in the places where we already fit is very much a thing.
In the section on teaching time and place, Dr. Prizant notes that a common problem in people's responses to our interests (and how we express them, which absolutely can be in infodumps) is focusing on behavior to the exclusion of motivation. Yeah, that's an easy mistake to make when all you describe is the behavior, even when it's behavior that you think is OK, isn't it? (Yes I'm pointing out that you are narrating behavior over motivation in your book, Dr. Prizant. Please follow your own logic and suggestions better.)
The idea of using interests to support engagement in school I think is useful. I'm a bit wary of thinking a career might come out of these interests, for reasons Dani's expressed well. Turning an interest into work can burn the interest out, and besides, some things just need to be for fun. That doesn't mean it can never work -- he gives some examples where building an interest into a career seems to have gone fine, at least from the outsider perspective, but keep the caveats in mind before suggesting someone else do it.
You can read part 5 here.
Chapter 3 is titled "Enthusiasms."
I feel a bit odd about the listing of "special" interests, here called enthusiasms, though it's mentioned that many call them "obsessions." (I tend to call my own "Autistic obsessions" but I'm the kind of twit who throws themself into a wall hard enough to shake the stage to protest the idea that indistinguishability/loss of diagnosis is an optimal outcome so take that with a grain of salt.) I've never felt weird about autistic people listing the interests themselves, which is fairly common: there's an entire Tumblr blog dedicated to sharing our interests! I think part of the difference is that when we do it, we get to explain how the interest makes us feel and why we have it and how we expressed it, and here it's just a list. Like in David's article for Knots. (You need to make an account to read the article online, but it is free.) I think that extra detail makes the difference for me between behaviorizing and humanizing when we describe the interest.
I like how Dr. Prizant points out that our interests are a source of, well, interest, plus happiness, and that this is on its own an argument against discouraging them. Yes thank you we have internal thoughts and feelings and what makes us happy matters on its own merit. Glad you pointed that out.
I also like the example of how a teacher was able to use a students enthusiasm in order to design an alternate assignment involving reading and writing that he completed happily because it fit the interest. I like how he points out that most people have interests and hobbies (and admits that we tend to get more intense in ours, because we do, but it's not the act of having an interest that's autism-specific.)
There's definitely a problem with the idea of "splinter skills" or "savant skills" though, in dividing us up into the parts you find competent or valuable and the parts you find worthless, and frankly a problem of applying improper standards when you think the neuronormative "overall profile" or "developmental level" is going to be a useful measure for us to have abilities or support needs that stand out from a "profile" we didn't really fit anyways. I say this as someone who hasn't had a single coherent developmental level (as defined neurotypically) since I was about five months old. Possibly longer. Doesn't mean I'm a savant or have splinter skills. It means autistic development is what happens here, rather than accelerated or delayed neurotypical development.
The "Remarkable" tales of passion are stories with happy endings that come from having encouraged, supported, accepted, and sometimes taken advantage of our interests, which is cool. The accounts definitely lean behaviorizing rather than humanizing (if you haven't read the behaviorizing and humanizing link yet, it's to Disability in Kidlit and the idea applies just as well to describing real autistic people as it does to describing autistic characters.)
The use of an interest, bringing supplies to education meetings so the student can engage with the meeting when they want and engage with their interest when they'd rather do that, is a good idea, and since involving students in their own education is important, I really like that idea.
He does address times when an interest can get us into trouble -- the key is when pursuing an interest could violate someone else's boundaries/consent, we don't get to do that. (He doesn't put it in those words, but it is the common thread between the examples given.) Which is legitimate.
Teaching time and place can be useful, but I'd like to add one more piece: supporting us in our choice, if we make it, to spend most of our time in the places where our special interests are accepted and are how we connect with people anyways. In autistic spaces, taking turns sharing lots of information about our interests is considered social engagement. (The taking turns so that we all get to do it is part of what's great about it.) Plus we can find folks with the same interest. The other thing is that many interests will have clubs or interest groups: heck yes we may want to join those! Arranging to spend more of our time in the places where we already fit is very much a thing.
In the section on teaching time and place, Dr. Prizant notes that a common problem in people's responses to our interests (and how we express them, which absolutely can be in infodumps) is focusing on behavior to the exclusion of motivation. Yeah, that's an easy mistake to make when all you describe is the behavior, even when it's behavior that you think is OK, isn't it? (Yes I'm pointing out that you are narrating behavior over motivation in your book, Dr. Prizant. Please follow your own logic and suggestions better.)
The idea of using interests to support engagement in school I think is useful. I'm a bit wary of thinking a career might come out of these interests, for reasons Dani's expressed well. Turning an interest into work can burn the interest out, and besides, some things just need to be for fun. That doesn't mean it can never work -- he gives some examples where building an interest into a career seems to have gone fine, at least from the outsider perspective, but keep the caveats in mind before suggesting someone else do it.
You can read part 5 here.
Monday, June 6, 2016
Alyssa Reads Uniquely Human: Part 3
I'm now reading Chapter 2. The previous part (Chapter 1) is here, and the start of my reading Uniquely Human is here.
I think I've put my finger on one of the things that's been bugging me. Yes, we go on to (at least partially) reframe the ways the students Dr. Prizant describes are acting, but it's still a behaviorizing (or sometimes partially behaviorizing) portrayal. The behaviorizing portrayal is then followed by investigating motivations on some level, but we're still starting with the standard tropes.
It's part of the general theme I've been coming to, where this is better than most autism narratives (I haven't thrown the book at the wall!) but there's a lot of "has a good idea but doesn't quite follow through on it."
Another example is the big idea of not thinking of autism as a bunch of symptoms/deficits. Yes, this is a good idea. But then, re: echolalia:
Reaction the next: I think original language is what's really meant, echolalia is our language for a lot of us... (see also my echolalic poetry, here, here, and here. Really want to argue the recombinations aren't my own language, even if the pieces are echoed?)
Parents apparently worry that echolalia will mark kids as... quirky. Yeah, I've got a complicated relationship with that word. (Comparative and deceptive) safety, erasure, "soft" disclosure, so many meanings behind that word.
I'm not sure why the part of trying to stop echolalia that is worse is the part where it's on the path to learning more "standard" communication (what I assume he means when he says learning to communicate and connect, since he's said in other spots that echolalia is communcation) as opposed to the part where it's silencing current communication (which he also points out as a problem.)
In this chapter I finally get to see advice from an adult on the spectrum cited as such, where he's learning from us as the experts he says we are rather than from (more humanized than by most clinicians) objects of study. The tendency has definitely been to treat us as subjects that he observes, which, yes there's useful stuff to be gained from observation but it took a while to get to the "actually using information you can get by asking us" for a book that calls us experts.
I really do approve of his pointing out that for none of the children that he worked with was echolalia actually meaningless. This is important! He studied this fairly heavily, it seems, and I would love to grab the citations because as much as echolalia as communication is one of those things autistic adults have been saying since ever, I don't know of too many clinical/academic citations to back it up. Finding that we use echolalia for all the same reasons and functions neurotypical folks use more "standard" language for is a handy thing to be able to cite.
However: If we're going to call echolalia part of language/a language, maybe we shouldn't call it a path to acquiring language, with no modifier on language? Echolalia really can be a path to acquiring non-echolalic or less-obviously-echolalic language, but 1) it's made of words and 2) serves the purposes of language so it's already language, so we should really note what kind of language it can be part of acquiring. I'd like to point you to the last three full paragraphs of "If you don't use your words you won't be indistinguishable" now. Really the whole thing but those last three paragraphs are what's most relevant to my points here: less-obviously-echolalic language is not the same thing as not-scripting or not-echolalic language. It's often a defense to make the echolalic nature less obvious, because folks will often assume the speech is meaningless if they know the speaker is autistic and they recognize that it's an echo/reference. (As opposed to neurotypicals apparently being clever when they make references?) Privileging language that you can't tell is echolalic, whether or not it really is, ties in to that same problem. Stop that.
Similarly, we don't take our "turn" in the coversation by merely echoing and "not really respond" (47). Remember that echolalia as studied and described here is 1) made of words and phrases and 2) serves the purposes of language so it's already langauge and is a response. That doesn't mean it's not useful to break long and complex sentences into smaller chunks. It is. Doing so gives us a larger library of phrases to work with and recombine, if nothing else (and it probably helps with understanding in ways that make recombination easier anyways.)
Then we get a story where Dr. Prizant asks a student why they do something. Yay, asking us. (So when I started reading Folk Psychological Narratives, which I swear I will eventually finish and then poke holes in the places where it doesn't follow it's own logic when applied to autism either.... the point is Hutto repeatedly emphasizes that the best way to get information on why a person acted as they did is to ask them. There are times where that could not work, but autism is not inherently an exception.)
In Justin's story, I think that there is some interesting framing of motivations, or some interesting motivations, even if the actions are good. Justin was getting nervous, and he was scripting (and the script was noticeable because it was not normative for the situation,) seemingly out of anxiety. So:
Continue to Part 4 here.
I think I've put my finger on one of the things that's been bugging me. Yes, we go on to (at least partially) reframe the ways the students Dr. Prizant describes are acting, but it's still a behaviorizing (or sometimes partially behaviorizing) portrayal. The behaviorizing portrayal is then followed by investigating motivations on some level, but we're still starting with the standard tropes.
It's part of the general theme I've been coming to, where this is better than most autism narratives (I haven't thrown the book at the wall!) but there's a lot of "has a good idea but doesn't quite follow through on it."
Another example is the big idea of not thinking of autism as a bunch of symptoms/deficits. Yes, this is a good idea. But then, re: echolalia:
In children who can speak it is often among the first indicators to parents that something is amiss in a child, when, instead of responding or initiating with the child's own language, the child echoes words or phrases borrowed from others. (37).Reaction the first: Uh isn't that describing a symptom or deficit.
Reaction the next: I think original language is what's really meant, echolalia is our language for a lot of us... (see also my echolalic poetry, here, here, and here. Really want to argue the recombinations aren't my own language, even if the pieces are echoed?)
Parents apparently worry that echolalia will mark kids as... quirky. Yeah, I've got a complicated relationship with that word. (Comparative and deceptive) safety, erasure, "soft" disclosure, so many meanings behind that word.
I'm not sure why the part of trying to stop echolalia that is worse is the part where it's on the path to learning more "standard" communication (what I assume he means when he says learning to communicate and connect, since he's said in other spots that echolalia is communcation) as opposed to the part where it's silencing current communication (which he also points out as a problem.)
In this chapter I finally get to see advice from an adult on the spectrum cited as such, where he's learning from us as the experts he says we are rather than from (more humanized than by most clinicians) objects of study. The tendency has definitely been to treat us as subjects that he observes, which, yes there's useful stuff to be gained from observation but it took a while to get to the "actually using information you can get by asking us" for a book that calls us experts.
I really do approve of his pointing out that for none of the children that he worked with was echolalia actually meaningless. This is important! He studied this fairly heavily, it seems, and I would love to grab the citations because as much as echolalia as communication is one of those things autistic adults have been saying since ever, I don't know of too many clinical/academic citations to back it up. Finding that we use echolalia for all the same reasons and functions neurotypical folks use more "standard" language for is a handy thing to be able to cite.
However: If we're going to call echolalia part of language/a language, maybe we shouldn't call it a path to acquiring language, with no modifier on language? Echolalia really can be a path to acquiring non-echolalic or less-obviously-echolalic language, but 1) it's made of words and 2) serves the purposes of language so it's already language, so we should really note what kind of language it can be part of acquiring. I'd like to point you to the last three full paragraphs of "If you don't use your words you won't be indistinguishable" now. Really the whole thing but those last three paragraphs are what's most relevant to my points here: less-obviously-echolalic language is not the same thing as not-scripting or not-echolalic language. It's often a defense to make the echolalic nature less obvious, because folks will often assume the speech is meaningless if they know the speaker is autistic and they recognize that it's an echo/reference. (As opposed to neurotypicals apparently being clever when they make references?) Privileging language that you can't tell is echolalic, whether or not it really is, ties in to that same problem. Stop that.
Similarly, we don't take our "turn" in the coversation by merely echoing and "not really respond" (47). Remember that echolalia as studied and described here is 1) made of words and phrases and 2) serves the purposes of language so it's already langauge and is a response. That doesn't mean it's not useful to break long and complex sentences into smaller chunks. It is. Doing so gives us a larger library of phrases to work with and recombine, if nothing else (and it probably helps with understanding in ways that make recombination easier anyways.)
Then we get a story where Dr. Prizant asks a student why they do something. Yay, asking us. (So when I started reading Folk Psychological Narratives, which I swear I will eventually finish and then poke holes in the places where it doesn't follow it's own logic when applied to autism either.... the point is Hutto repeatedly emphasizes that the best way to get information on why a person acted as they did is to ask them. There are times where that could not work, but autism is not inherently an exception.)
In Justin's story, I think that there is some interesting framing of motivations, or some interesting motivations, even if the actions are good. Justin was getting nervous, and he was scripting (and the script was noticeable because it was not normative for the situation,) seemingly out of anxiety. So:
To replace this unusual greeting with a more conventional one, his parents prepared an index card with reminders of what to say in social situations. (49).So we're doing this to replace the unusual greeting? Not to ... help with the anxiety? (Which could absolutely have a side effect of a more conventional greeting happening.) Interesting priorities there. If we're doing it because of the greeting, that really is trying to get rid of autistic behaviors because they're noticeably autistic. If we're doing it because in this case the script is a sign of anxiety, we're trying to help reduce a source of stress. Rather different goals.
Continue to Part 4 here.
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