Episode Transcript
[00:00:00] Hello, fellow SLPs and OTs and any other allied health or educational people out there. Nurses, welcome. Hello to you all.
[00:00:10] If you're just listening, thanks for listening. And if you want to see my face, you can head on over to Patreon. And for the people on Patreon who are seeing my face right now, hi. It's my face.
[00:00:21] How's it going?
[00:00:24] Parte, I guess up in here. Anyway.
[00:00:29] Yeah, so I did not expect to be coming back on here to talk about these facilitated communication variants after my interviews with Janice Boynton, which you can check it out. They're on my podcast. I have a bonus episode here on Patreon that I might put on the podcast. I'm not sure I just put it as a bonus episode, mostly because I think Janice made some really valid points about like, what happens if an adult who's being facilitated by a parent wants to date and have like, intimate times with their partner?
[00:01:02] Is the. Is the moms or dad still in the room with them? Because that's kind of creepy and kind of gross and I just wanted to put it there because it's, you know, sensitive topic and whatnot.
[00:01:13] Anywho, I guess I just let the cat out of the bag. But no, there were some slightly more disturbing things that she mentioned. So head on over there to hear that one.
[00:01:23] But I did not expect to come over here and revisit this. But given that it's Autism acceptance month, I've been seeing a lot of stuff about spell to communicate and then also because of.
[00:01:34] Is it Woody Brown? Is that his name? I think where there's this, you know, this book came out.
[00:01:41] Mom uses facilitate communication. Mom is the main. Is it seems like the facilitator for Woody and and is now out there promoting this book saying that he wrote it. Although mom is a former English major and apparently was a story analyst for like Hollywood types, including like Steven Spielberg and stuff for a long time. So long little sus about authorship there. Cuz like I don't know a single English major that thought I. Nah, I definitely don't want to write a book. Writing a book. Ew, gross. Who wants to do that?
[00:02:14] Not me. This English major, you know, that's not usually a thing you hear about there.
[00:02:19] So little sus. Um, but I'm seeing a lot of stuff probably because of that and then the confluence of the fact that it's April.
[00:02:26] I'm seeing a lot of stuff on Instagram and stuff about people pushing the spell to communicate. Rapid prompting method letterboard, like facilitate communication Variants, all these different variants out there, but particularly the ones that use a letterboard, that seems to be their big push right now. And what I'm seeing is a lot of these posts around basically saying if you don't believe the parents and if you don't support this despite there not being authorship testing, then you're ableist, you know. And I just want to let you guys know if that seems to like trigger some sense of shame in you and thinking, oh no, am I ableist? No, no. It is not ableist to want to ensure that the communication methodology being used to ideally allow non speakers access to robust expressive language. It's not able us to want that to be validated, to have authorship testing, to have third party blind research based testing to ensure that it really is that non speaker who is communicating using the AAC device and or method that's not ableist.
[00:03:50] Okay, No, I mean can you get more trauma informed than that, honestly? Because like, because communication is a human right. If we can't communicate, we lose access to so many things including self advocacy, telling people when something's going wrong in our life, we lose access to mental health care, we lose access to a lot of stuff if we don't have access to independent communication. Right?
[00:04:15] And we already know non speakers are very vulnerable to having people misinterpret their behaviors, their, their non verbal communication attempts.
[00:04:25] We know that they're already vulnerable and there's already a lot of issues in that realm already, societally speaking. So it is not ableist to want to ensure that these non speakers are gaining independent access to robust expressive language and an robust expressive communication outputs regardless of the modality they're using, whether it's a letter board or what, who cares, right? That's not a big deal. So I want to unpack some of the arguments that I've seen made.
[00:04:56] In particular, there is this one, I believe it's they're an adult autistic of color on Instagram that I started following because I love hearing their perspectives and I want to learn more about the perspectives and the experiences, the intersectional experiences of autistics of color. But this person did post this whole thing about how like if you don't support these things, you're ableist and, and went on this whole slide deck example of like all the ableist research that's out there and the reason why you can't just say like there's no research like that, that's not a good argument or whatever. And I want to unpack that a little bit for people. Because I thought to myself, as someone who's gotten kind of obsessed with social psychology through trauma informed stuff, I've kind of dovetailed more that lately because I feel like that's one of the harder parts of being trauma informed is understanding all these different complex dynamics within like systems and society, societies and dehumanization and bias and stigma and all this sort of stuff. Right. I just want to unpack that a little bit because it sounded. I would not be surprised if some people out there read that slide deck and thought this is a compelling argument as to why I should be considering this.
[00:06:08] And I'm here to let you know that no, unfortunately this autistic creator missed the mark in my opinion. Despite being an autistic cacahlor, they missed the mark with some of their takes on the whole history of ableist science, of science based on white supremacy. Basically because this person was not wrong about that. Absolutely not wrong about that. Like there, there is a long history of that that is not up for debate. That's not the problem.
[00:06:38] But it was sort of the cherry picking of examples. And the kind of argument that was being built is not, it's, it's obfuscating. The argument of like there needs to be authorship testing, which is the ultimate argument here is that these are untested methods and they seem very, very similar to the original facility communication. And we know what happened with that. We ended up with evidence. And we know that there's this complex psychological thing going on where the facilitator truly believes it's the, it's the non speaker saying these messages. But in reality it's not in reality it's the facilitator doing it.
[00:07:16] Because human psychology can become locks like that. Right?
[00:07:19] So here's the thing.
[00:07:22] When we talk about the history of white supremacy research and ableism within research, okay, it's 100% true. However, this particular creator and I think some other creators out there, I would suspect, who also make a similar argument are ignoring the fact that, you know, two things can be true at once. We can both have that history of research and we can also have researchers who are trying to do better, who are, who are putting out better quality research that's not based in those same ableist views and that are countering those ableist views. Is it newer research? Of course it is. Because research is slow to catch up to social movements. Like research moves a lot slower than the Internet and social movements nowadays thanks to probably social media and the Internet. Right. These things move really slow comparatively so yeah, it's behind, but we do have better research on that. They also seem to ignore that a lot of the research we have in the field of speech language pathology on the use of AAC and like methods used to help teach someone how to become an independent user of their AAC device, to become fluent on it, to become, you know, the master of their own voice. Right.
[00:08:42] The big push for a lot of that was because of the original facility communication, because of the giant mess that made. Because of the, the fact that the original, the original facility communication stuff really set back the public's acceptance and belief in aac.
[00:08:58] That did not help promote AAC use. It did the opposite. I mean, I've seen posts out there on Tumblr. In my private, like anonymous Tumblr account, I remember seeing a post several years ago from like a linguistics major, probably undergrad major, who was explaining to someone that like they, this, the student apparently had heard about the original facility communication and then was trying to explain how like non speakers can't really use aac.
[00:09:25] It's not really, really them using it, it's the person who trained them how to.
[00:09:29] And la la la la. And I was like, wow, that's not true.
[00:09:33] That's a broad generalization from one thing, right? One thing went wrong. And then, you know, I mean, it was a similar argument in my mind to like the, you know, the coco, the gorilla and the, and the use of sign language there and how like, you know, there was all this debate about like, if gorillas can really use language or whatever. But ultimately, at the end of the day, COCO wasn't being taught American Sign Language.
[00:09:56] COCO is being taught a sign approximation, like a visual approximation of English is what they were actually teaching because none of the people there were actually American Sign Language users. And when you get down to the fine motor needed for American Sign Language and the facial expressions considered and the body language aspect considered, gorillas don't even have the physiology to do it. So it's like, you know, can't, can't do that.
[00:10:22] It was like taking that and like generalizing that to mean like, American Sign Language isn't a language is kind of where this person was going with this argument. And I was with like AAC and like the history of facilitate communication stuff.
[00:10:34] And I was like, whoa, that's a real big.
[00:10:37] They made a big leap. And it was a erroneous leap, but it was clearly a leap that they were taught in their linguistic classes or somehow they got that message in their head from their, their time in linguistics that like AAC is all together disproven and it's like it's not because there are differences here. Right.
[00:10:55] So, you know, we have better research in terms of what it looks like and we have AAC experts out there, you know, questioning like, you know, when a student looks like they're just using the device to stem, maybe it's not stemming, maybe it's babbling. Right. Which makes a lot of sense because you're mapping what you see to like what would be the corresponding circumstances speaking child version of this kind of behavior. That makes sense, you know, in lieu of, of a robust body of research to explain it to us, it makes sense to kind of map it to like, okay, if a non speaker was doing this, what would I call it? Maybe it's not really stimming. Maybe it's actually just exploring. Right. Babbling is a type of exploring.
[00:11:40] So maybe that's what it is. You know, which in my opinion, based off of AAC users I've worked with, I think it is, I think it is exploration of their device, which is good. They should explore their device just like speakers explore their voice and their speech as they're learning it.
[00:11:54] So yeah, that's one aspect. The other thing is that we already obviously have the research into the dangers of the original facilitate communication. And these newer variants are not so different. They still seem very highly dependent on the actual person, the, the speaking person being there to facilitate, to hold, hold the board or whatever. They seem to always have to be there. So it's like.
[00:12:17] Or to give visual cues or something. It doesn't seem to be the kind of thing where they can take it to anybody in the world and communicate with them using that device. Right. So that's kind of an issue.
[00:12:29] We also know a lot in research about psychological complexity here. We know Munchausen's by proxy is a thing. I'm not saying that's what's going on in all the cases, but it could be a factor. We don't really know because they won't be tested for that. Right. We know about other psychological complexities and disorders and mental illnesses and stuff that can definitely confound all of this.
[00:12:54] If it's, you know, if the person facilitating happens to have some other type of thing going on in their mental health, in the world of their psychology, we know that can confound things. Right. And we also know that from research, research is the thing that helps us to unequivocally that non speakers are really vulnerable to not being able to tell anybody about their own discomforts. Not being able to have their protest taking seriously, not being able to tell people when there's abuse or neglect happening to them because people already default to not really believing what they're saying or to misinterpret what they're trying to say, right? And not really taking a point of curiosity of like wait, what do they mean by that? Let me explore that a little bit more. Like we already have the societal biases. The societal bias against non speaking and the confounding of non speaking with like cognitive ability and like trying to equate the two is already a huge hurdle to overcome. And I understand that it's really appealing if you see somebody who appears to be like a genius that we never would have known about suddenly being able to display their, their liter literary, you know, writing skills at a high professional level. I can see the, the appeal of that.
[00:14:14] But without authorship testing we can't trust it. That's the problem, right? Because they're already vulnerable and because if that person doesn't have access to independent communication without that particular person there or a particular couple of people trained and how to facilitate with them if those people aren't in the room and that person therefore doesn't have access to communicate with people or we will never know, they will never have a voice, that is a problem.
[00:14:41] And in my mind, if there's a.00001% chance that that's happening, I want to know about it.
[00:14:50] I want to know if there's a chance.
[00:14:52] I want testing to tell me and I want testing, I want, you know, evidence to tell me that beyond a shadow of a doubt this is a safe method. That's what I want to know.
[00:15:05] Is it safe? Do these people genuinely become independent of their caregivers even?
[00:15:10] Right. Can they become independent? Not necessarily with motor, sure.
[00:15:14] But can they take their communication method out to like a restaurant and order? Can they go hang out with a same age peers without having an adult there to facilitate? Right? Like that's what I want to know. I want to know they have access to the full range of human experiences without having their facilitator present.
[00:15:35] That's what I want for them, right?
[00:15:38] As much as within reason, as much as their, you know, other medical complexities allow.
[00:15:43] So this also gets at the nuanced argument around current best practice about aac. I feel like from the post I saw and some from other posts I've seen from other purporters of this, it seems like the people who are pushing for these, these facilitated communication methods. They try to spin it like skeptics. Issue is with the device itself. And honestly, that confused me at first too. It confused me as an SLP that I saw these people being like, why do you have such a thing against letterboards? What's wrong with the letterboard? You know, some autistics are hyperlexic. They're really good spellers. Why wouldn't they be able to spell on a letterboard as a communication method?
[00:16:26] But then at the same time, I heard other people saying like, no, this is facility communication. And I was like, I'm so confused. Why would a letter board inherently be facility communication? Well, it turns out it's because it's not just the letter board. They're actually talking about a method. They're talking about the method of having the person there to like move the board around for the person to help them point to the letters instead of holding their hand, which was the original facility communication method. So like they just switched out where the motor help is coming from, which direction. Two sides of the same coin. Right? And it's like, because like, I don't care about letter board. And if I have a student who does really well with like typing out messages using their Chromebook or if they're really good at spelling and using, they could either use a speech generating device on an actual letter, like layout. Right. And get the little keyboard layout for them. Or you can use low tech. You know, letterboards are used in hospitals all the time and like acute care for, for aphasics and stuff. Global aphasia and whatnot. Right, because like, most people don't want to like lose an iPad on an acute floor somewhere. Yeah, it's like, use low tech. It's much cheaper and very easy to replace, you know, and you can make it really big print for people to be able to see really easily and stuff. Right? So like, I don't mind it. Right. It's not the device, though. That's the thing. They try to argue like we have an issue with the device. It's not a. The device isn't the issue. The methodology is the issue.
[00:17:52] The methodology is the issue. And it's also kind of funny because now they're trying to target occupational therapist a lot by talking about the whole body apraxia thing, which is not an actual medical diagnosis. We already have terms for the type of apraxias. We have limb apraxia, we have apraxia of speech. Like, we don't need another term of whole body apraxia. That's okay. We don't actually need that term. It's not that useful. Okay. If they have limb apraxia, they have limapraxia.
[00:18:20] But then we also have ways to get around that. Right. We have head switches and eye gazing and we have all these other ways of accessing AAC because we want people to be able to access it without having to have someone else there to hold things for them and to do the motor planning for them. That's one of the biggest things here. But you know, you can't really say like the board is the thing people have a problem with when now you're wanting to target that. It's not communication you're working on, it's actually the motor planning. That's what you're helping with.
[00:18:49] And Listen, they're targeting OTs because they can't get enough SLPs on board with these methods. Okay.
[00:18:55] They're just going to a different population to try to spurt it around. And it's like, that's sus. In my opinion. That's us.
[00:19:02] Because like if an OT is helping a kid with feeding, is it best practice in OT world to move the plate around to line up with the fork? Or do you want your patient to like actually be able to aim for the food with their fork and handle that on their own? Right. Like. And yeah, there's different adaptations you can do for utensils, different handles. There's electronic things that help to stabilize from tremor and things like that. Yes, but that's the point. That's why those things exist, is to increase independent access. Right. Which is why we have different ways of accessing AACs to increase independent access to AAC. That's our whole point of having head switches and eye gaze and that kind of stuff. Okay.
[00:19:43] It's so people can have independent access. Yeah.
[00:19:47] So that is sus. Okay, to. To quote among us. All right. Suspicious sus, you're getting kicked off the ship.
[00:19:56] I haven't played that in a really long time. But yeah, you know, so like we have that issue. We also have the issue of like they're co opting what independent communication says, which is why I keep redefining it as like independent access to the device, independent use of the device regardless of what adult is in the room.
[00:20:14] Who is in the room, who cares? They can go to a new classroom with all new staff and still communicate with that brand new staff. They don't need the same person there all the time.
[00:20:23] Right. They can go to college and go attend their classes without having to have somebody sitting there and helping them communicate during class because of the original facility communication. That's why we focus so hard on that. But now they're trying to say independent just means like they still need the person to help them move the board because the whole body apraxia. So independent communication just. I forget what it was. It was on the Janice episodes where she described like, what they actually mean by independent, which is basically like they don't need prompts to do it anymore. They'll just start pointing basically. And it's like, that's not independent.
[00:20:59] We wouldn't call that independent if we're still supporting somebody. If you're still having to do hand underhand even though they're voluntarily doing it, that doesn't mean they're independent yet. Right. Like that's not how we would call that. So that's also sus. That's very sus when it comes to pseudoscience, where they start to co opt the terms used by the researchers and then they don't really read. They act like they're using the same definition, but they're not.
[00:21:25] In reality, it doesn't get used the same way.
[00:21:28] It's not practiced the same way. The methodology is the issue. Right. Which is why they want to co opt the terms and not really tell you that they're redefining it. Because then it makes it sound like we're arguing the same thing, but we're not.
[00:21:41] So that's my big takeaway with that piece of it is that it's like, I don't care about the tool. I don't think a lot of AAC proponents like, care about the tool. I think SLPs who are really into a C do. Do we care if they're using low tech or high tech? No.
[00:21:58] What we care about is independent access to robust expressive language.
[00:22:04] Okay. That's what we care about.
[00:22:07] And they can communicate when they want to. Motivation to communicate is a separate thing. That's different than do they at least have access to it. Right. Then we can talk about motivation. But like, anyway, I mean, you have to work on motivation at the same time. Right? But like, yeah, all right. So that's the two things that can be true at once there. Yes. There is a long history of nasty ableism based history research. Okay.
[00:22:35] And there are also researchers who know better and are doing better and there's newer research. And also that like, we're not even arguing about the same kind of research.
[00:22:45] Because if they're trying to argue about like people not believing aac, period, that's not where we're at. We're talking about the best, the best methods to support language learning through via a device as the way to access the expressive language. That's what we're talking about. And we're talking about being able to use it independently, just like a speaker can. Right? Which total side note that also gets it like making sure they have access to be able to very be very specific with their protest. And you know, also honestly, as kids get even younger kids than we think, speakers start to cuss. So like they probably need access to like slang and like maybe some customs the way their peers have access to that because speakers it doesn't get gate. There's no gatekeeping to that. So anyway, that's just a side note that I've been thinking of this little tangent, but that also has a lot of societal bias to overcome because you have the parents, you have the adults who don't think children of that age should use those words, therefore they'll gatekeep those words. So like that's a separate thing. But yes, that's part of the social stigma part that needs to be overcome or needs to be worked on and educated about. Not that doesn't mean bait throw out baby with bathwater.
[00:23:59] Right? We don't want to do that. The other way that people tend to say that people are ableist if they don't completely buy whole cloth. The spell to communicate stuff is because it's not neurodivergent affirming if you're not believing people who like the. In the personal lived experience of people. Okay, like yes, it's anecdotal, but you can't throw out personal lived experience.
[00:24:25] Now the issue I have with that, my response to this and the reason I say it's not able us to question if a parent, if the facilitator is actually the author or not.
[00:24:36] Okay. Because yes, we're talking about the lived experience of the parent.
[00:24:41] But without authorship testing, we don't know if we're hearing about the lived experience of the non speaker. We don't know.
[00:24:47] That's the problem. Are we, are we hearing first person account or are we hearing second person account?
[00:24:54] Right. Are we hearing some other person's account and interpretation of what the first person account probably is like. Is that what we're hearing about? Because we need to know that distinction and there needs to be authors of testing to know that distinction. Okay.
[00:25:06] So the thing about it is, is that this is different from hearing about first person accounts of speaking autistics, adult Autistics talking about the negative mental health impacts of being taught to mask, of being expected to behave normal as much as possible, like, 24 7. Right.
[00:25:27] And those accounts are very in conjunction. They. They kind of coincide with research of other populations who discuss something very similar to masking, which is like, anytime anyone in any marginalized population feels like they have to hide who they are or they start to internalize this narrative of shame around how their brain is wired or who they are in general or their whole identity, if they feel like that's a shameful identity and it needs to be hidden, there's a lot of bad, negative mental health outcomes from that. We have a whole field of research in the minority stress model, which is the research term for this area of research. Okay. So. And we have it for autistic adults now as well. We have newer evidence for that, that it's like, yes, this does have bad mental health outcomes. The queer community, we know about transgender people feeling like they have to live in the closet, gay people having to live in the closet. These things are bad for people's mental health. We also, coincidentally, this also coincides with the other. Another population that gets studied with this is children of color who. Who are adopted to white parents, especially in the US and other white countries, that they can also struggle very heavily with their identity as a person of color, but within a highly white world. And you have parents who aren't really trained to help them understand marginalization and racism and things. Right. So they don't get that same cultural community support sort of deal. Right.
[00:26:59] And that can have negative mental health outcomes. Right. So like, being neurodivergent, affirming by adjusting how we're prompting or how we're giving feedback to autistics for the sake of hopefully not encouraging, internalizing shame around their narrative urgency. Right. That's very different. Okay. And like, teaching social skills in the context of I'll teach you how to, like, go to a professional interview, but these are skills you can use or not use. It's up to you. Here's just. They're just tools. They're strategies. You can use them if you feel you need to. To feel safe or to feel like you can access something that you otherwise won't be able to access without it.
[00:27:38] But also that. And, you know, but. But they're yours to use. Like, you don't have to use them all the time. And honestly, don't encourage people to use them all the time. And don't encourage the message of you have to learn how to talk to people or else you won't have friends. Right. Like that's a really dangerous message to give somebody. I mean, I grew up with that message. I got that message very implicitly and sometimes explicitly from, from certain people. Right. So like being neurotiver, deferment in that way is trauma informed, right.
[00:28:04] Learning how to adjust the way we're approaching, helping a neurodivergent access things, but also self advocate also like understand the world they live in better and what society like the biases society has. This is trauma informed, right? This is helping them unpack that sort of stuff.
[00:28:24] And it is neurodivergent affirming. And yes, it started with anecdotal evidence of adults, but this is concurrent with a broad amount of psychological research.
[00:28:36] The research might not be in our field yet, but it's in psychology.
[00:28:40] And it's very much aligned in parallel with other human experiences of having to hide who you are.
[00:28:47] So it's reasonable that yes, and these are adjustments to like we can just focus more on advocacy and we can focus more on like letting them know that if they advocate and don't get those accommodations, it's likely due to bias that that person who had the power to give the accommodation had and they just, they were going to deny it anyway. And that's part of societal bias. And that's part of, you know, that's why we have the disability rights movement. Right. That's why we have the neurodivergency movement. You know, it's like there's these differences between individual experience and systemic barriers and stuff like that. Right.
[00:29:20] So that's a different way of looking at firsthand accounts and at anecdotal evidence that's direct first person account without authorship testing for non speakers, without knowing that they 100% have independent access to their expressive modality, despite who is there to support them for their motor or whatnot.
[00:29:43] We can't trust that this is a first hand account. It's not even anecdotal in that sense because we already know that there could be so many psychological things going on with the parent that their interpretation might not be correct and it might not be true.
[00:29:58] You know, so there you go. All right. Also, quite frankly, we also can't pretend that some of these parents who go out there and write books and get a ton of attention and maybe big social media followings and maybe start making a lot of money off of this sort of stuff, we can't pretend like there aren't parents out there who do exploit their children. Whether they consciously do it or not, Right? In this day and age of post Ruby, Frankie, eight passengers, trial stuff and family vlogging and all that, you cannot tell me there aren't parents out there who maybe subconsciously they don't think they're doing any harm. But you know, maybe they do kind of like the perks that come along with all the attention. Right? You can't tell me that. So parents are not infallible because parents are humans is my point. That's my big point there.
[00:30:41] They are not infallible, they are human. And yes, their experiences are valid when it comes to the kinds of struggles they have. But the enemy for the struggle the parents are having is the sister system that refuses to support them as sufficiently as they deserve to be supported. They deserve to have access to mental health support. They deserve to have access to professional caregivers so they can take time off and be a human and go out and do their own things. Right?
[00:31:08] Like being a caregiver to a child with complex medical needs is socially isolating, is traumatic, creates a lot of caregiver burnout, caregiver fatigue. There can be so many things that come from that, that, that in the United States especially, caregivers do not get appropriate support and help.
[00:31:27] Right. There's many pitfalls there. So I'm not trying to attack the parents by any means who say this is the way to go. And I can see the appeal under that much stress, I think I, I don't quite understand the full level of stress they're under because I don't have that experience personally. But you know, in my life, when I've been under extreme chronic stress and fatigue and stuff, yeah. If somebody handed me a panacea and said, here, do this one thing and it'll probably fix all of this.
[00:31:55] And suddenly all this stress about what happens to my kid if something happens to me, where do they live? Can they take care of themselves? I don't even know suddenly that all that stress goes away. I can see, I can see the appeal of that, right. I can see the appeal of having a little quick fix cure all.
[00:32:11] But unfortunately we have to know if that cure all is really actually real and not just pseudoscience or a placebo or something, right? And not potentially doing even more harm. We have to know that because a lot of things, if they sound too good to be true, nine times out of 10, they are too good to be true. Unfortunately, when you're dealing with highly complex situations like this, because every non speaker is a human, every parent is A human. Humans are messy and complex and you know, they got all sorts of stuff going on. And every situation is unique and individual. And so it's like there's so many moving parts here. You have the individual situations, you have society, you have bias, you have stigma, you have a broken healthcare system that doesn't offer sufficient support, like so many issues, right?
[00:33:03] And this kind of gets at sort of my final point, which is we also know from psychology, when it comes to human complexity and human psychology across the board for all types of humans, just because somebody is autistic, like if the parent is an autistic adult or what have you, if they're speaking autistic of say an autistic kid, and they're saying, you better believe me because I'm autistic, so I know autistics are not immune to pseudoscience and grifting, okay? Neurodivergence as a whole. We are not immune to falling for what sounds really good, okay? We're not immune to that because we're still humans, okay? Regardless of how high level you think your reasoning skills are, you are, you are still not immune to being convinced of something that actually isn't true because it seems true or because you want it to be true, right?
[00:33:54] And this is because psychology is complex. And if you're part of a marginalized group, internalized oppression is real.
[00:34:01] Where you start to internalize these biased frameworks around who you are and your community and, and the greater world and how you fit into it and how you have value in this world, right? We all have different biases around that. Internalized ableism is definitely a thing under that internalized oppression where you know, you're not really a worthwhile human being unless you're productive. And you can only be productive if you go to college and write a novel, for example, right? Like if that's the sort of value system or bias somebody is operating under, then that is what they would want this, you know, they would want some way, some avenue for their child to reach that point, right?
[00:34:44] If a parent's operating under the idea that the only way their child will have value is by going to college, going to Harvard or something, if that's their goal, then like offering them some sort of somewhat too good to be true way of having their kid go to Harvard. Pretty dang appealing, right? Easy to fall for that and under internalized depression as well. This also leads to things like identity based gatekeeping, where it's like only people inside this understand it, only parents of non speaking autistic kids understand this only, you know, we're the only type of people you should be listening to. All these other professionals with their credentials, you shouldn't listen to them. Regardless whether they're parents of autistic kids or not, they're still biased with their professional stuff. And it's like that idea that, like, I'm not biased, you should listen to me because I'm not trained, I'm trusting my own eyes and my own experiences.
[00:35:36] Well, your own experiences are naturally biased as well by not only your own values, but also your own fears, your own stress, your own experiences that you've been through.
[00:35:46] Right. Like, we're all biased, basically, which is why we need research. That's why we need, you know, blind authorship testing. Ethically done blind authorship testing. But they're starting to say you can't do that because telepathy and because it means you don't trust their communication, therefore it's unethical. Like, they're starting to find a way to avoid the testing, which is really sus. That's really sus.
[00:36:11] If you're talking about a vulnerable population, that's super sus. They do want it to be validated, you know, and so if somebody's using their own identity as a neurodivergent themselves or whatnot, if they're trying to use their identity to tell you, you know, you can only believe me and not these other people there, they might be kind of weaponizing the identities they have and their intersectionalities. And that happens. Right?
[00:36:39] And a lot of times people are not aware they're doing it, but at 100 happens.
[00:36:44] And this is part of that deeper psychology and the impact of like, oppression and stuff, this is, this is what it leads to. And like this when societal expectations and values contradict your own identity and like all that stuff that happens inside our heads with this. Right.
[00:37:01] So there's that. And like, it can be a bit of an emotional manipulation to use your identity and to use your knowledge of like, ableist history of scientific ableism to basically say you're ableist. If you don't believe me, see, here's all the evidence. You're aligning with all those people that's kind of manipulative, you know, and it's, it's, it's a logical fallacy. It's not really necessarily true. Right.
[00:37:32] So I've been babbling about this for a little while now, so let's go ahead and review what I want to say about this. Okay, the first point, the biggest point, is questioning authorship of communication messages, especially when that communication is dependent on having a specifically trained person in the room with the kid or the non speaking adult. It's not ableist to question that.
[00:37:56] It's ethical and it's trauma informed. Because if you have this little, if you have this little nagging feeling of is this actually firsthand like what this person wants to say or are their messages somehow being skewed or is the other person, like is the other person really more in charge than that non speaker?
[00:38:15] That is a big concern for safety, right? Because we know they're vulnerable.
[00:38:20] We've been here before, this is in our first rodeo. We know, right?
[00:38:24] We don't really care that much about the actual tools you use for aac. I mean the modality doesn't matter whether it's low tech, high tech, verbal, non verbal, whatever, okay?
[00:38:37] The problem is the method. The problem is the method that relies on that person either holding a board, which is, I haven't seen any videos of someone, not, although there's claims verbally that kids can do it without having someone hold, hold a board. But then it's like in some evidence of that, it's that other person is still there, so there's still visual cues happening, right? So like that's a problem, okay?
[00:39:01] And yes, the history of ableist science matters, but social progress also matters. And researchers out there trying to untangle all that ableism and research and trying to do better and have been doing better, and the fact that there are plenty of autistic researchers out there now who are doing better, we need to respect that as well.
[00:39:23] Science is not just a single thing. Scientists and researchers are also complex humans. And so it's not a perfect system, but it's the best system we have for parsing out what is actually happening versus what could be influenced by a person's own internal biases, right?
[00:39:46] Because non speakers are so highly vulnerable to not being respected as humans who are capable of communication.
[00:39:55] We really need to have that testing because specifically because we're talking about such a vulnerable population.
[00:40:03] Because we're talking about, I mean, the documentaries that come out on Netflix and stuff, right? Like the tell them you love me thing or whatever, right? We know we've been here before and we don't want that to happen again.
[00:40:14] I don't think anyone actually does want it to happen again. But the way to prevent it from happening again is authorship testing, right?
[00:40:22] First person accounts of adult neurodivergence. Speaking adult neurodivergence who advocate for neurodiversity, AFFIRMING feedback and prompts and self advocacy type direction versus compliance or else kind of stuff, right?
[00:40:38] That is, those are. Those anecdotes do count for changing how you're practicing, I think. But it's because they're first person accounts.
[00:40:46] Without authorship testing for these particular non speakers, we don't know if these are first person accounts or not. They might not be and that therein lies the problem.
[00:40:55] I would love to change up what I'm doing and I would love to totally back these methods if I knew for sure beyond a shadow hotel that they are first person accounts and that the non speaker is actually the author.
[00:41:08] Also remember that somebody who's part of a marginalized group, they can also carry internalized bias, internalized shame, internalized ableism.
[00:41:19] They are not immune to these messages of, you know, magical sounds too good to be true type cure alls for certain levels of stress in their life. They are not immune to having their values cloud their judgment, okay? Because this is just an inevitable part of being a human. All right?
[00:41:40] And ultimately research for this authorship research, it's not wanting to control the non speakers. It's not wanting to control or gatekeep who gets to access aac. It is an act of respect.
[00:41:52] It is an act of caution around wanting safety for these kids. And I don't think anybody on either side of this debate wants non speakers to be unsafe. To be very clear, okay, they asked for a show of hands. No one's gonna say, yeah, I don't want them to be safe. Absolutely. I want them to be completely manipulable. Like I don't think nobody wants that. Right?
[00:42:18] But we have to ensure that safety. That safety shouldn't just be a vibe check. It should be data evidence. Evidence that really discounted the all the different psychological complexities and idiomotor type complexities that could be contributing to what we see.
[00:42:34] Right?
[00:42:35] We want genuine like cause effect here. Right? They have aac, therefore the effect is they get independent communication. That's what we want to see. Right?
[00:42:46] So hopefully that helps to unpack that a little bit. For people out there that like, you're not ableist to want that sort of authorship testing. It's incredibly important for that. You're also not ableist in recognizing complexity and nuance within this debate.
[00:43:04] We really don't want to settle for uncertainty, right? We want genuine access to independence because that's the best chance they have at safety and empowerment in the world. Best chance they have at attaining the highest quality of life and the most independence possible. You know and you know, non speakers are human and the parents of non speakers are human, which means they are all just as diverse and messy and complex as any everybody else's.
[00:43:33] And we have to ensure communication independence per not being dependent on a person because independent communication is a human right and I would argue a human necessity.
[00:43:47] All right, so I hope that that helps to unpack some of that here on this great Autism Autism Acceptance Month.
[00:43:57] I hope that helps to unpack some of that because there is a tangible difference here. Neurodivergent affirming stuff in my mind has a lot more to do with trying to stave off the potential negative mental health impacts of chronic internalizing shame around who you are and chronic discrimination and dehumanization and bias that all narrative versions are going to face in this society. Because we still have that. The actual enemy is that bias. And also a medical system that does not provide adequate support to families, just period. Especially in the United States. And so the answer is unfortunately, the long continuing progress toward more equity and more inclusion for people with all disabilities across the spectrum of whether of severity when it comes to whether they're apparent medical disabilities that need a lot of support or whether they're more non apparent and being affirming is more about unpacking our own biases and trying to ensure that what we teach is empowering our clients.
[00:45:06] Right?
[00:45:07] Empowering them to find their own safety in life.
[00:45:11] That's like the big takeaway here. And having access to independent communication and robust expressive language is a key part of being able to access safe spaces.
[00:45:24] Right? It's a key part of being empowered in the world.
[00:45:28] All right, thanks for listening to all of this.
[00:45:32] Just so you know, I do have a new Google form that I made for topic suggestions and also I might do more off the cuff stuff on the Patreon videos there that are just more like off the cuff answers. But there are. I already had a response which is amazing. After one day I got a response. Woohoo. That's so cool. Awesome. I might. I'm gonna go ahead and record the video for that now that's just more off the cuff. But some of this is also probably gonna give me ideas for things to go into deeper research to do more like broad public audio podcast and or interviews about so it's going to be awesome. I think it'll be great for me to know more of what's out there and what people really want and what they really need to hear or what they want. My perspectives on possibly or what's the Trauma informed take on this, you know, kind of a thing, at least as far as I can see it.
[00:46:23] So go ahead. If you have any ideas for that, go ahead and fill out that form. And especially, I'm really, especially talking to, like, new SLPs, SLP students, like, people who, if you're, you know, if you're early enough to this field, that, like, you struggle with some of these sort of messagings out there, like, let me know. I want to be here to help you guys into some support and to give you a little more mentorship in this area. Because I get a lot of feedback at talks and trainings from younger clinicians who really kind of just want some validation for, like, hey, my instinct is to focus more on client safety, but my supervisor says I shouldn't be right. And it's like, I would say your instinct is good. Personally, I would validate that instinct, you know, so sometimes it's just nice to hear that sort of stuff, right? So you don't feel like you're going kind of crazy, especially for the kind of person who, like, depending on where you live, depending on the kind of community you're in, you might be the only person really doing work this way, and you might feel like you're going a little bit nuts. So I'm here to let you know, hopefully to hopefully validate that.
[00:47:27] I mean, you might still be nuts, but you're not nuts for this. Okay, that's what I would say, because it's actually a good thing. All right, well, go ahead and fill out that form if you have any ideas for me. And thank you so much for listening so far. And I said, super appreciate all of you, and I love all my listeners, and thank you so much.
[00:47:46] I love just getting to see that even just one person is listening to an episode on my little analytics. It's just nice. It's just such a nice thing to see. It gives me so much validation when I feel like I'm just kind of throwing things out into the world and having no idea if anybody's really. If it even really matters. So it does really help a lot. And I hope you all to, you know, have a good week or two, as much as you can.
[00:48:10] Take a lot of deep breaths right now because the world is really freaking scary at the moment. And so, you know, you can acknowledge the tragedy, but you can also find joy and humor, because that is an essential part of human experience. And so it's an essential part of finding community and safety and some level of healing, even in the face of adversity and strife. So hope you all have a good week or two. And, yeah, I forget how I signed this off, but anyway, thanks for listening, and until next time. Okay, bye.
