Tag: communication

neurowonderful:

youneedacat:

The words of a group of autistic people who learned to type using the Rapid Prompting Method (RPM) — what Tito Mukhopadhyay was taught by, except it doesn’t involve hitting people anymore (which is actively discouraged by the same woman who did hit Tito in the course of his “training”).

I always notice that parts of the autistic community that are more connected to the general developmental disability community, and are more likely to have been labeled as intellectually disabled as well as autistic, and those made up largely of those labeled low functioning, are far more racially and ethnically diverse than the “AS/HFA communities” (in name or in practice) that I’ve found online and offline.  The diversity in this video mirrors the diversity in my special ed school.  I don’t know what it is about the “high functioning” communities that attract so damn many white people and shut out so many people of color, but the “low functioning” autistic communities don’t have that problem.

Also please note that nobody is obligated to enjoy being autistic, especially if their main experience of being autistic is being trapped and unable to communicate their thoughts for years or decades when they have thoughts as complex to communicate as any “high functioning” person.  Lots of people who’ve gone years or decades with no communication system are highly ambivalent about their autism at best, and with good reason.. Not everyone, mind you, but that is a serious hardship to have to take on, and it’s not the same as having your speech shut down sometimes.  It’s never, ever being able to say anything important, even when it’s super important, even when it’s life and death.  And the people in these videos are the lucky ones for whom RPM was successful.  There are plenty of people who won’t ever learn to type or speak, and some of them are okay with that and some aren’t (judging from the words of people who were once in that category for a long part of their life and then came out of it).

Anyway, I’m glad this video was made.  All the words in the video are printed, not spoken.  They’re either superimposed on the screen, or writteon on boards.  So it’s not blind-accessible, and I don’t have the spoons to make a transcript.

And I’m reminded once again why autistic communities comprised mostly of nonspeaking people and people who’ve been in the DD system, tend to be more welcoming to me than other communities:  They’re more diverse.  Racially, ethnically, class, sexuality, gender, everything.  And that makes it so there’s a much wider space for me to make into my own, in these communities.  Even if they’re still not quite ‘home’.  And even if I still don’t quite fit because my life story isn’t the one people expect of a nonspeaking autistic adult.  But still.  Things like this make me ache for community.

Just where I can fade into the background.  That’s what I wish I could do.  Fade into the background, not be a big name, just be me, just be me around people who can mostly read me even when I’m not typing.  I’d love to find a community where nobody spoke and nobody typed for certain periods of time, whether they were ever capable of it or not, and nobody saw it as “Oh no people are overloaded we have to Do Something about this, it’s bad!”  People would just see it as “Words are tiring and we’re not made of words and we want a break from words.”

Of course RPM often doesn’t allow that, at least during training sessions.  They’re very big on not allowing autistic people a moment to process things, just shoving them to the next level as fast as they can.  And it works, and I know exactly why it works, and many autistic people would gladly take that temporary tradeoff in order to learn to communicate in words.  But many autistic people also need time away from words and that needs to be respected too.

TL;DR:  I like this video.  It’s by several nonspeaking autistic people who learned to type using the RPM (Rapid Prompting Method).  I have my misgivings about the RPM but it does get results and those can be life-changing for those it works for.  I miss communities (like AutCom) that form around autistic people who mostly haven’t been considered ‘high functioning’, there’s a definite difference in diversity and in how welcoming they are to someone like me, versus the less diverse and less welcoming “AS/HFA communities” (whether they call themselves that or not, that’s what they are).  I guess the perfect community for me would be the “I fluctuate between categories and eat their remains for breakfast” community but I haven’t found that one yet.  Love the video.  Keep them coming.  All the words were written by autistic people.  Until someone makes a transcript, this is Deaf-accessible but not Blind-accessible.

I like this video. I like seeing autistics who found a thing that works for them. I like how the video was honest about how unimaginably frustrating and isolating it has to be to not be able to speak at all. I’m functionally verbal about 80% of the time, so even at my most frustrated or in my greatest struggles, I’ve never experienced what non-verbal autistics do.

That being said, I also like that this video also wasn’t a sob story. I love that the actual autistic people were the focus, that even in the scenes where they were working with RPM clinicians/facilitators/I don’t know the right word, there wasn’t that insiduous “able gaze”, no use of camera angles or lingering shots to frame the autistics as pitiable, small, young, or helpless and the non-autistic people as these towering angels acting on the bodies of autistic people. That happens a lot and it sucks, but this video was really good.

I think that, when it comes to verbal autistics, or autistics who would receive a “high-functioning” or Asperger’s diagnosis, there is a real lack of diversity in the community in large part because of the intersection between racism, classism, and inaccurate stereotypes about what autistics look like. Like, many people know that autistic girls/women are under-diagnosed, and the same goes for POC. I have heard from many, many autistic adult and teens who non-autistics would label as “high-functioning”, and if they are any race but white it seems like they are way more likely to recieve a misdiagnosis (I hear ODD or ADHD a lot for brown people, and schizophrenia or schizoaffective disorder for black people quite a bit) or to be shot down entirely in their pursuit of an ASD diagnosis. This is totally unscientific, just coming from what I’ve heard and read others in the community saying and the messages/e-mails of people who contact me, but I think it happens, and happens a lot.

So when an autistic POC can’t talk or they look obviously disabled in “classical autism” way, I’m thinking an ASD diagnosis is more easily forthcoming, since professionals just can’t make that person fit into any other boxes, than in a case where an autistic POC can talk with their mouthparts. Those autistics can be more easily pushed into a category that professionals, influenced by the very pervasive racism and classism in the medical community, can feel better about.

I feel like the other large thing contributing to lack of diversity of in AS/HFA communities is racism coming straight from the community. Just straight up gross sentiment and behaviour from autistics, which is awful. Or thoughtlessness and being unintentionally closed off or uninviting. Like, it is not enough for white autistics to just not be racist, there also has to be an effort towards being inviting and welcoming to autistic POC, and purposefully moving over to make spaces for them.

But of course I’m part white, so I have white passing privilege and all that entails. Any autistic POC please feel free to correct me on anything I said here. And if you want to or feel comfy doing so, please chime in. Why is the HFA/AS community so darn white?

(Source: https://www.youtube.com/)

youneedacat:

“Towards a Behavior of Reciprocity” by Morton Ann Gernsbacher.  Not captioned as far as I can tell.  It mostly goes through a bunch of studies showing the best way to “improve autistic social skills” is to train nonautistic people to behave reciprocally (with give and take) to autistic people.  And how weird this is given that “lack of social and emotional reciprocity” is a criterion for autism, not for nonautistic people — yet it’s the nonautistic people who lack reciprocity when it comes to autistic people, and autistic people show plenty of reciprocity if we’re shown it first.

(Source: https://player.vimeo.com/)

autisticadvocacy:

[Images are of a table with red, yellow, and green stickers as well as a sign on it. The sign explains that they are interaction stickers to let attendees know your interaction preferences.]

LinuxCon added communication stickers to their their con! Thank you for increasing access- we hear it went over well!

This is a fantastic step forward, a great way to help people of all abilities and neurotypes interact safely in a shared space, but, a reminder! The original traffic light badge system piloted by the autistic community involved symbols as well as colours so that people who are colourblind could follow the system too. Since red-green colourblindness is one of the commonest forms, and red and green are polar opposites in what kind of interaction a person wants, please, if you want to do a communication system, remember that colourblindness is a thing and put symbols on your badges/stickers.

actuallyclintbarton:

lowspark13:

I really want to start communicating through text more often, except it wouldn’t make me more comfortable since I can barely stand reading things I’ve written. It gives me the same feeling i get when I listen to my voice on a tape recorder.

Also I’ve never used AAC and I don’t think explaining why I “suddenly” can’t talk would work out very well. I’ve never gone completely non-verbal;I can always mange to force out the words.

I have been thinking about trying to get my wife and I into an ASL class so I don’t have to always talk but I don’t have to rely on text/having my phone or laptop on me.

Plus I can’t hear well anyway so it’d be plenty helpful for loud places or when her voice isn’t very loud.

(Though tbf I have not discussed this with her yet as it’s not currently a viable option due to money – she might not want to.)

I totally understand though – I’ve ALLOWED myself to go fully nonverbal like. Once. Because I was safe and with people who understood. I feel like I’m almost not allowed to use AAC since I can almost always force words out if I need to.

AAC is for everyone, but if you feel ASL is going to be more accessible for you, then, by all means, go for it. Learning another language is never a bad thing.

I often wish I learnt more Auslan. We had a Deaf class at my infants school, but the kid I bonded best with was Shannon, and his hearing with aids was good enough that he hardly used it and got mainstreamed with the rest of us kids by second grade. Now all I remember is how to fingerspell the alphabet.

tardiscrash:

Let’s be real, in a time before the internet people didn’t have more adventures and make more meaningful connections. They watched TV and listened to CDs. Before that they listened to records and read magazines. Before that they listened to the radio and read bad dime novels. Before that they embroidered or some shit.

People have been staying inside and ignoring other people for as long as there have been buildings. 

Seriously, this. I mean have you read Jane Austen? I mean, sure, there are dances and parties and all that shit, but in particular, in Pride and Prejudice, there’s at least one big scene at Mr Bingley’s house where Lizzie’s reading, Darcy’s writing a letter, and the others are all doing their own thing, too, with occasional bursts of conversation. They’re sharing a space, but they’re not constantly engaged with one another.

The problem with errorless learning

realsocialskills:

Content warning: This is a somewhat graphic post about ABA that links an even more graphic post.

There’s a particular variant on ABA called “errorless learning”, which works like this:

  • You break a task down into small steps
  • Then do discrete trials of the steps, over and over (If you want to know more about what discrete trials are, this post by a former ABA therapist explains it).
  • When someone does it right, you reinforce in some way (either by praise or something concrete)
  • When they do it wrong, you either ignore it, or prompt and reinforce a correct response

This is considered by many to be a kinder, gentler form of ABA than punishing incorrect responses. (And maybe in some sense it isn’t as bad as hitting someone, taking their food away, or shocking them. But that’s not the same as actually being respectful. Respecting someone takes much more than refraining from hitting them.)

Errorless learning is not actually a good or kind way to teach someone. It is profoundly disrespectful.

When you ignore responses that deviate from prompts, that means that you’re ignoring a human being whenever they did something unexpected or different from what you wanted them to do. It means you’re treating their unscripted responses as meaningless, and unworthy of any acknowledgment.

That’s not a good thing to do, even with actual errors. When people make mistakes, they’re still people, and they still need to be acknowledged as thinking people who are making choices and doing things.

Further – not every response that deviates from the response you’re trying to prompt is actually an incorrect response. There are a lot of reasons that someone might choose to do something else. Not all of them are a failure to understand; not all of them are incorrect in any meaningful sense.

For instance: they might be trying to communicate something meaningful:

  • They might be putting the story pictures in a different order than you’re prompting, because they have made up a different story than the one you’re thinking of
  • They might be giving you the boat instead of the apple when you say “give apple” because they are making a joke about the boat’s name being Apple

They might be intentionally defying you in a way that deserves respect:

  • They may be of the opinion that they have better things to do than put the blue block in the blue box for the zillionth time
  • They might know perfectly well what you mean by “give apple”, but think that eating it is a better idea
  • They might be refusing to make eye contact because it hurts

They might be thinking of the task in a different way than you are:

  • They might choosing to use a different hand position than the one you’re prompting, even if they understand what you want them to do
  • For instance, they might have discovered that something else works better for them as a way of tying their shoes
  • Or they might want to try different things
  • Or the position you’re using might hurt

People do things for reasons, and those reasons aren’t reducible to antecedents and consequences. People have an inner life, and their thoughts matter. Even children. Even nonverbal children who need a lot of help doing things. Even adults with severe cognitive impairments. Even people who have no apparent language. All people think about things and make decisions, and those decisions are meaningful. All people deserve to have their thoughts and decisions acknowledged – including their mistakes.

When you teach someone something, acknowledge all their responses as meaningful, whether or not they are what you expected. 

Listening to folks whose speech is unusual

realsocialskills:

This happens a lot, especially for autistic folks with a particular cognitive configuration:

  • An autistic person says something in the most straightforward way they can think of
  • But it’s far from the way most people say it
  • And it doesn’t occur to other people that they’re being direct
  • It’s seen as either the autistic person not understanding something, being presumptuous, or being hilarious

For instance:

  • Alice and Nancy walk into a cafeteria, which is overflowing with different food options
  • Alice (wanting a particular kind of food and not knowing how to find it): Where’s the food?
  • Nancy: Umm, everywhere?

In this example, Nancy thought Alice was just being annoying or funny and didn’t understand what she was trying to communicate. This would have been better:

  • Alice: Where’s the food?
  • Nancy: Which food do you mean?
  • Alice: Food!
  • Nancy: Are you looking for something in particular?
  • Alice: Food!
  • Nancy: Your favorite food?
  • Alice: My favorite food! Chocolate pie! Burger?
  • Nancy: They have both of those things. We will see them when we go through the line.

Or: 

  • Nathan is discussing politics with his son, Arthur
  • Nathan: What does the president do?
  • Arthur: Important stuff. Not like you do.
  • Nathan: You don’t think what I do is important?!
  • (Nathan, telling the story later, uses it as an example of how kids have no filter)
  • What Arthur actually meant was along the lines of “The president is a public figure with a lot of power, and everyone pays a lot of attention to what he says; that’s really different from how other people’s jobs work”.

This would have been better:

  • Arthur: Important stuff. Not like you do.
  • Nathan: What kind of important stuff?
  • Arthur: My fellow Americans…
  • Nathan: Important like speeches?
  • Arthur: Yes. Speeches on TV.
  • Nathan: I don’t make speeches on TV.
  • Arthur: You go to the office. 
  • etc etc

tl; dr: When autistic people communicate things, we often sound strange. Don’t assume that we’re joking or being dismissive or cute just because the way we phrase things is very different from what would feel natural to you. Listen to what we’re actually saying.