Nonverbal Autistic Child cards
Tag: nonverbal
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?
Dear #actuallyautistic and #askanautistic
Talk to me about your experiences with being temporarily and/or partially nonverbal?
I still can’t figure out if I’ve ever experienced it. A lot of the ‘official’ information (e.g. books) about autism doesn’t seem to mention it as a thing that sometimes happens to people who can usually speak – but it seems like the vast majority of usually-speaking autistic people mention it as a personal experience.
The closest thing I can think of that I have experienced is a few different thing:
1. When I get kind of ‘hyper-verbal’ when I’m overloaded, and my speech is very garbled and quick, and isn’t really communicating anything I want to say. E.g. I respond to a question quickly without realising and I say something that is the opposite of my actual opinion.
2. There are sometimes times when I have trouble putting a thought into words or working out how to respond to something (e.g. a vague question), but this doesn’t seem to fit the usual descriptions of being nonverbal? Because it’s normally due to the context and specific to the thing that I’m trying to say (e.g. I can’t explain one specific thing, but I can easily tell the other person that I can’t explain it), rather than a ‘global’ inability to speak.
3. Times when i am very reluctant to speak and it feels like a bit struggle to get words out. In this case its more often to do with the person I’m speaking to- usually when I’m socially tired and I really don’t want to spend the energy on interacting. But it’s not impossible for me to speak – I usually just keep my responses brief to try and stop the interaction from lasting a long time (and I can get irritable if people try to keep going).
So. Tell me about how it feels when you become nonverbal? Are you ever ‘partly’ nonverbal in any of the ways I describe? Would you consider them ‘types’ of nonverbal-ness, or just other facets of autistic communication differences? Is it possible/plausible that I’ve never been ‘fully’ nonverbal? Is it possible to have been nonverbal and not noticed? (infodumps greatly appreciated – reblogs/asks/submissions welcome)
The times I have actually experienced this are:
1. When I’m overloaded/having a meltdown/super frustrated or emotional. It’s like a ‘block’. The words are in my head, or, at least the feeling of what I want to communicate is, but I can’t make my mouth move to say them or translate what I’m feeling and force it out. When the overload or whatever passes, it eases off and talking becomes possible again, though fully unhindered speech may take time.
2. During sex, to a lesser degree. Rather than impossible, I often find forming words really hard when I’ve got all that sensory input, and taking the focus off enjoying myself and putting it into co-ordinating speech is kind of annoying, so I don’t tend to try unless I have to (i’m uncomfortable/in pain, i’m oversensitive, etc), or I’ve been asked a direct question that needs answering, like, ‘am I hurting you?’, ‘do you need more lube?’ or, ‘what do you need? (if something’s not doing it for me)’.
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…
Yeah I mean. ASL would be nice and helpful, but not necessarily any more helpful than AAC. It’s…
Okay to be perfectly honest? Part of it is I don’t feel like I deserve it but most of it is not even that I’m afraid to use it but I am petrified of using it and then someone who saw me use it hearing me talk with Birdie or someone I’m comfortable talking with at the time and judging me for it.
Which is stupid because it’s not just for completely 100% 24/7 nonverbal people and I know that, and usually I couldn’t give a rats ass what some random person would think, but I’m honestly kind of afraid some off-their-gourd allistic is gonna start something when I’m least capable of handling it.
At least with ASL I can just say that I’m hard of hearing and it’s easier in louder spaces to sign sometimes. (Which would both be and not be a lie).
And that is a compromise and it’s OKAY to compromise and do what’s most likely to cause you the minimum of stress which INCLUDES avoiding stupid questions by random strangers. Okay, this probably doesn’t connect (in my head, it does, but that doesn’t always translate), but here goes. I use the word lesbian to refer to myself. It encompasses the fact that I’m in a long-term,committed monogamous relationship with a woman. People sort of get it. It’s shorthand. But honestly? I don’t consider myself a lesbian. I’m ambivalent about the word bisexual, though that’s closer to the mark. Queer probably comes closest, because it’s a general term. The reality is ‘I fall in love with people’ tends to result in a hell of a lot of blank looks, confusion, and demands for clarification, even in the queer community. If I added ‘sometimes I like sex, sometimes I just want cuddles and scritches and petting, and sometimes I really don’t want to be touched at all’, there would be even more confusion. So I use lesbian even though I don’t really click with it because it gives people a label they can understand (even if they’re homophobic, they know what a lesbian is), and they’re happy that they’ve categorised me and can move on.
The point I’m making is this – people, even people who work with autistic people, even some autistic people themselves, JUST DON’T GET that sometimes, some autistic people can’t use verbal language all the time, or at times, it’s so stressful and hard it’s exhausting, or leads us into a meltdown. And to explain all that, when you’re on the edge of a meltdown or exhaustion, is TOO MUCH. And that’s okay. You’re allowed to be too exhausted to be the perfect information resource/soapbox advocate. You’re allowed to think of your autistic manifestations as being disabling. That doesn’t make you a bad autistic person. And if using ASL, or home sign, or signed english means you can use the excuse, “I’m Deaf/HoH, and it’s easier to sign in this situation/when I’m tired/when I’m having trouble keeping up”, then that’s fine, even if the real reason you’re signing isn’t completely to do with the fact that you’re Deaf/HoH. YOU DON’T HAVE TO JUSTIFY YOURSELF HONESTLY AND COMPLETELY. You are under no obligation to. And if the short explanation you give isn’t enough for them to accept and leave you alone, then they’re a rude asshole anyway.