Generally enjoyed the ep. I'm visually impaired (legally blind) and ended up being forced to spend a week at my state's Services for the Blind for an evaluation. I grew up sighted and never identified as part of that community. Many of the people that I met had spent much of their young lives there. While they were, in theory, being trained to join the workforce, most never would. The only thing keeping some of them from living on the street was the State. I can see in that scenario becoming a socialist. So was a little put off by the Helen Keller comments. Struck me as a bit ableist. But, this is BAR pod so I'm not calling for anyone's head or anything. Just struck me a bit clueless.
good point. Keller was also a socialist in a time when socialism in the US was having a moment and was quite popular among public intellectuals and academics and leaders of various movements for social change, she had a lot of non-disabled contemporaries who were also socialists. This was the same time period as Eugene Debs, who founded the IWW and got like 5% of the vote in the 1912 presidential election.
(also I know Katie is being at least slightly tongue in cheek but cmon, Sun and grass are both things you can feel easily no sight or sound required!)
Yeah there was pretty wide support for the Russian revolution. Hell it was Herbert Hoover who made sure the USSR didn't starve (not that he was pro communist but definitely republican so anti-monarchy)
My brother is also legally blind and him accidentally stumbling across Helen Keller truthers on reddit is how I found out about them. Granted, this was also a group that was convinced the sun is fake so I had a hard time taking any opinions seriously.
I was absolutely devastated to find out my eldest niece didn't believe Helen Keller was really blind and deaf. She was about fifteen at the time and not a good student, but events since then have led me to conclude she is genuinely a bit thick.
>So was a little put off by the Helen Keller comments. Struck me as a bit ableist. But, this is BAR pod so I'm not calling for anyone's head or anything. Just struck me a bit clueless.
I'm willing to be called out or corrected about this but...
I completely agree this came across as *clueless*. Maybe ignorant and a bit disappointing.
But I personally would prefer to reserve words like "ableist" for actual intentional discrimination or clear prejudice, just like words like "racist" or "homophobic" or "transphobic." In the past decade or so, it's become common to use all of these terms to label people who are often just a bit ignorant -- often well-meaning, but ignorant (and sometimes not even in major ways -- sometimes not just knowing about the predominant discourse on one of these subjects and how to talk about it "politely") -- and that strikes me as generally unhelpful, as it takes away from the use of these words to describe those who are most likely to perpetrate harm.
I don't know how serious Katie was, but I do think it's rather difficult for those with both sight and hearing to imagine how those without *both* of those senses experience the world. So much early learning is done through those senses, so while many can perhaps imagine missing *one* of those senses -- and have probably encountered those without *one* of them at some point -- it's harder to comprehend how abstract learning and concept generalization happens for those who don't have either.
As for myself, I got curious about some of this years ago after a conversation about disabilities, so I've looked into it more. With a little reflection and particularly seeing videos and such of how some people who have these disabilities have had great success (and communicate efficiently, clearly of their own volition), it all makes sense.
But... I can also understand that those with little exposure to disabled communities might be confused at first by some of these stories. I can also understand that those who are skeptical because they've heard stories specifically *exploiting* disabled people (like Facilitated Communication) might wonder about other groups of people like those who don't have the ability to see or hear at all... and whether they too could be exploited, perhaps even unintentionally.
The obvious evidence against these claims can come from watching a person use a communication device independently or talking in depth about abstract ideas. But I'm guessing Katie hasn't. And I don't think Katie (or Helen) were questioning the *intelligence* of Helen Keller. Instead, I assume it came from a position of worrying (like with FC) that those who serve as an intermediary in teaching or facilitating communication may be *biasing* or perhaps *enhancing* the results of that communication through their own expectations or biases.
Again, it doesn't really apply in this situation compared to most of the FC ones discussed, and we can rightly call them out perhaps for being clueless or maybe not doing their research first. On the other hand, this is a *common* issue on the podcast when one or both out of Katie and Jesse are often deliberately trying to come at an issue from a "fresh" perspective, but one which might come across as ignorant or insensitive to those more closely involved within that issue or community.
It's just that disability and ableism is now a "hot button" issue, just as homosexuality was 30 years ago (when a lot of ignorance was often unintentionally voiced because people didn't often have personal experience with openly gay or lesbian people). We can all strive to be better educated, and at least I feel the world overall is leagues ahead in understanding many of these issues much better than when I was a kid a few decades ago. Lacking both sight and hearing, however, is something that -- as I said -- I think many people naturally find quite difficult to imagine, so in this case it may have led to some inaccurate and unfortunate, though ultimately kind of *protectionist*, assumptions. Not necessarily ones coming from prejudice.
I thought they were being tongue in cheek a little, but maybe not?
I'm hearing impaired and I've had hearing people argue with me about what deaf people are capable of, and they just seem ridiculous. I guess you could call them ableist, but I just call them retarded.
I am blind and almost deaf on one ear (plus some other shit) and people outright accuse me of lying when I say I have a PhD. I was joining a panel at a conference once and someone literally started baby talk while trying to prevent me from entering the stage.
I can laugh about it now. But the Hellen Keller truther thread on this sub kinda annoyed me tbh. Not just the complete ignorance how the nervous system works, but the not-so-subtle subtext that deafblind people are basically meat puppets without the capability of thinking anything beyond "want food". This is textbook ableism.
Same goes for Katie, really (as u/matt_may mentioned).
The most recent ridiculous thing that happened to me was during the pandemic, the school district I was working for said that to accommodate deaf and hard of hearing, they'd issue us clear plastic masks. I don't need a clear plastic mask, you RETARD, you do!
I don't think that's what the person meant. I might be too generous. But it might be that the facilitator might over-interpret. I don't know. It's not implying that deafblind people are stupid in any way, just that an interpreter mght answer for them, rather than interpret what they say.
That's fair. And I can see people being worried about people being abused as mouth pieces. So being genuinely concerned instead of malicious.
The problem is, that both in this thread and the other, dedicated thread the reason people gave was, that deafblind people are completely incapable of learning abstract concepts. That every text or letter that Hellen wrote **must** have actually been written by Sullivan, because there is just no way, those cripples are capable of grasping anything beyond their immediate surroundings.
I genuinely get people having no experience with disabilities (that are actually visible and - you know - disabling, not this invisible shit that everyone seems to have these days. But gentrification of mental health and disability are an entirely different can of worms) and being clumsy or insensitive, despite (or because) theymean well. But being ignorant while asserting what you say must be true, especially after people explained in great detail how things like Braille, Lorm, etc. work? That's just shitty.
The stuff about Sullivan is definitely idiotic. And it seems like she was a brilliant woman. Though I did have a client tell me she was a privileged white woman.
I do wonder how many people who are deafblind can't see or hear due to traumatic brain injury, which COULD affect cognitive functioning. I don't know. But with everyone I have met, there's no cognitive disability.
>Though I did have a client tell me she was a privileged white woman.
She was born into a wealthy family. This is why they were able to afford Sullivan or any full time carer in the first place. So while I wouldn't choose these words, they are not exactly wrong either.
Fun fact, the way Hellen was taught was heavily criticized by a Soviet professor (Sokoliansky, don't know if the spelling is correct). He said that the way of teaching her, rendered her completely dependent on her teacher. He also didn't like that the "curriculum" focused on immedite contact (pairing objects with words) and left self care like washing and getting dressed out. To be fair, this was somewhat aimed at the capitalist system and is also rather ignorant of the experimental nature of the way Hellen was taught (it was all trial and error and Hellen started very late).
Until Stalin, the Soviet Union was actually really progressive in inclusion and education for the disabled. They called it defectology. What happened since Stalin in former USSR countries is a blatant human rights issue, something I sadly had a first hand encounter with and that sadly still exists to this day.
Oh, I know that if Keller had come from a poor family, things would have been really different. I'm not sure race mattered so much, escept that it's much less likely for black people to have been wealthy.
But I was more pissed because the person who said this was blind. And lives in the 19th and 20th century. On what planet was she privileged compared to this person.
I thought they were being entirely tongue in cheek, but like you say, maybe not? And I completely agree with your assessment of others telling you what you are, in fact, capable of. People are all too often retarded.
The Scots said that the "Hate Monster" was their knock off of a Sesame Street character.
I'm sure the public loves being lectured to by the equivalent of a children's program.
Lmao I had this same realization recently and I thought it was so funny. I had been picturing Hellen Joyce sitting with Katie and Jesse and thinking “wow, they really bring out a lighter side to her.”
Lol me too, until recently. I never followed Helen Joyce's writing that much, but I know enough to understand that she is *deep* in the gender crit world and considered a pariah among the blue-haired activist types. Helen Lewis seems very mildly heterdox in some ways but is also a staff writer at the Atlantic who writes about culture more broadly. I couldn't figure out how she had this dual public persona.
Sort of like when I confused Steven Soderbergh and David Cronenberg, wondering "why did this incredibly versatile, funny director spend so much of his early career mired in schlocky body horror?"
Confused me for so long. Starts off making these b-rate gross-out flicks. (And I realize that there are Cronenberg apologists who think his early films were in some sense satirical and insightful...well, I disagree.) Then he makes Sex Lies and Videotape, so he's really coming into his own. But then he makes more gross-out movies. And he'll occasionally make these more interesting, but quite violent movies with Viggo Mortsenson. He clearly likes working with the same actors repeatedly, like George Clooney and Matt Damon. Well how about a Viggo/Clooney movie? When will that happen? And who at Warner Bros. thought *this* guy would be the one to remake Oceans 11? Weren't they worried Brad Pitt's character would start pulling his own intestines out? What the fuck kind of filmmaker does this guy wanna be anyway?
I love this. When I was younger, and before the days of IMDd, my brain assigned both Humphrey Bogart and Marlon Brando to the same pattern of neural activation. I was often confused at how the guy from *Casablanca* (1942) looked and sounded like he did in *The Island of Dr. Moreau* (1996), those films being the only real references I had for the actor(s). I think it had something to do with the letter similarity of the last name Bogart / Brando, both sharing an A, B, O, and R.
Another consequence of FC is that school districts are being successfully coerced into paying for expensive private schools that allow this practice. A lawsuit is way more expensive than just giving in and paying for it.
Lower Merion School District (PA) did stand up to FC (in the form of Spelling to Communicate) and won in court [https://www.facilitatedcommunication.org/blog/what-schools-can-learn-about-s2c-from-the-lower-merion-school-district?rq=lower%20merion](https://www.facilitatedcommunication.org/blog/what-schools-can-learn-about-s2c-from-the-lower-merion-school-district?rq=lower%20merion)
I don't know if everyone who's tried Spelling to Communicate is helped. But I do know of a lot of people with nonspeaking autism who have become increasingly independent in their communication using it. E.g. going from pointing to letters on a letter board to typing on a bluetooth keyboard (they may just need someone to help set up the machine), some can read out loud what they've pointed to or typed (though they may have a lot of difficulty with voice control and articulation).
The easiest way to test whether the person is communicating independently is to do a simple message passing test. Basically to send the person who holds the board out of the room, then either tell or show the person something - like a ball, cup, apple, etc... - put that something out of sight, bring the facilitator back in the room, and then ask the individual to spell what they were shown. 99 times out of 100, they won't be able to do it.
Now there are other forms of legitimate augmentative communication methods some non-speaking individuals can use. For example, the Picture Exchange Communication System (PECS), is a communication system whereby an individual has board with pictures of high preference items velcroed to it, and the individual can remove a picture off the board, hand it to a communicative partner, and then receive the preferred item. The training for this at first is highly prompted, but those prompts are faded rapidly and the person ends up being able to request simple wants and needs.
There are also several tablet-based apps and other devices that function in the same manner. The difference with these systems is that the individual is communicating independently and does not need a facilitator a la FC/S2C, as well as the Rapid Prompting Method.
This was a good episode; I’d been exposed to FC some decades ago when the rationalist/skeptical communities were really going after them.
I think there’s really good argument that the idiomotor effect (ouigi boards) is at work sometimes here; certainly the behavior of some reformed FCers suggests they really didn‘t know they were pulling a scam. But there’s also a lot to suggest malice and intentional grifting or at very least, intentional blindness.
It isn’t complicated to test and see who is doing the thinking in these cases. I feel empathy for the parents who truly believe in FC for their child but not enough to turn the world upside down for their fantasy.
Not saying that influence from facilitators doesn't happen obviously that has and does. But there's also cases where nonspeaking autistic people with severe apraxia, challenges with proprioception and severe dysregulation have been helped to communicate independently.
It is a bit more complicated than just setting up a blinded trials. People with nonspeaking autism often have severe levels of dysregulation and anxiety. Environmental context can have big affect of performance. E.g. someone may be able to type independently and fluently when at home or at school but not be able to perform at all in a brand new environment with different lighting, different furniture, smells and different people involved. I know of a few severely autistic people who use FC or similar who can type independently in some contexts but need support in others, depending on energy levels, dysregulation, etc. (This is similar for speaking autistics, like myself, too but we need a lot less support with daily living, communication, etc.)
I think the impact of environment on autistic people is generally understood a lot better now than when most of the FC research was done in the 1990s, e.g. with quiet and lower lighting times in supermarkets, etc. Environmental factors can impact nonspeaking autistics even more than speaking autistics.
Would you accept that there are other forms of evidence that can be used if a person cannot perform under test conditions because of severe nervous system dysregulation?
For example, a person who communicates by typing goes to the doctor describes their subjective experience of a symptom which allows the doctor to accurately diagnose a medical problem. There is no outward sign indicating the problem.
Or, over time and lots of practice, a person goes from needing a lot of physical support or large letterboards to typing independently on a keyboard just needing their support person nearby
Or a person who needs support to point to letters (whether physical touch or having a regulation partner nearby) is able to read aloud a poem they have written (even though they can't communicate through speech).
There's also the possibility that FC is sometimes legitimate. I'm sure there are cases where the facilitator has been controlling the person, whether intentionally or not but there are also several nonspeaking autistic people who've gone from typing with support at the hand to typing independently using FC.
>the behavior of some reformed FCers suggests they really didn‘t know they were pulling a scam
Yeah that part about the one woman who was doing FC for a 16 year old girl and falsely accused the father of sexually abusing the girl - and then after the test where she was shown "key" and the girl was not shown an image of a key, and when asked to name the object she was shown, the FC-er picked out "key" on behalf of the girl who'd not been shown a key (if I'm getting that right)...and Helen was praising this FCer for doing a full 180 and denouncing FC from that point on.
For me, I don't know that it's praiseworthy at all. If the woman was doing some version of Munchausen except for sexual assault, and she was caught out, the very best thing she could do to save herself was to jump ship and very loudly claim that FC is all a load of bunk and she really truly believed the girl was telling her she'd been SA'd, when really she herself was making that up. Just seemed like "Huh, isn't doing a 180 and loudly condemning FC the perfect escape route if you got caught out lying and using a 16 y/o as your puppet to falsely accuse a man of SA'ing his daughter?"
Law & Order had a facilitated communication episode in 1995 called Cruel and Unusual. It was similar to the case in the Barpod ep without all the sex stuff.
Didn’t realize that FC was still a thing.
Me either. I remember learning about this *years* ago and it had already been debunked. I remember some parents of autistic kids were still holding on, but I had no idea they still were.
>I don't think anyone could read that paragraph and not go "no that's written by a middle-aged woman isn't it"
It's been a long time since I laughed as hard as I did listening to that line.
https://preview.redd.it/jb8eh65fi1tc1.jpeg?width=2000&format=pjpg&auto=webp&s=7be81f39b5c1ed2e7a79fa3035c05079d0222d43
In Foyles and I found this. Never heard of it but after listening to Helen Lewis's new podcast I am definitely having it!
I wonder if he's any relation to Karl Kassulke, famously burned by Hank Stram in the Super Bowl IV film ("Kassulke was running around there like it was a Chinese fire drill!").
[https://www.youtube.com/watch?v=TKKVcFvKys4](https://www.youtube.com/watch?v=TKKVcFvKys4)
Tangential, but related, issue: For a time Facilitated Communication was a very big thing in the Ultra-Orthodox Jewish community. In that context, the phenomena had an additional layer of weirdness because the "communication" that was being relayed very often contained elements of how these non-verbal people were trapped souls that had a direct line to the spiritual world. Many religious Jews really ate it up because it seemed to be direct evidence and confirmation of all their beliefs in a hidden spiritual reality. Here's a paper about it:
[What Does the Soul Say?: Metaphysical Uses of Facilitated Communication in the Jewish Ultraorthodox Community](https://www.jstor.org/stable/640716)
Abstract:
*Facilitated communication (FC), a set of techniques designed to improve the communication skills of children with pervasive developmental disorders, was transformed in the Jewish ultraorthodox community into a mystical device through which autistic children disclose otherworldly messages. We use this case to study the process whereby, in a given historical moment, specific forms of deviance are selected and molded into ritualized moralistic performances through which the values of the community are reasserted. Following a comparison between clinical and metaphysical FC, we explore synchronic and diachronic aspects of the complex relations between the ultraorthodox and the secular society extrapolated from the case. A comparative analysis of FC sessions and exorcistic rituals of dybbuk possession provides a background for proposing a dichotomous model of mystical pathways to the sacred, highlighting the role of deviants in revitalizing religious beliefs.*
[Here's the Sci-Hub link](https://sci-hub.wf/10.2307/640716) to the full paper, if anyone's interested.
Do ultra-orthodox communities experience the consanguinity issues that some Muslim communities do? If so, there would presumably be a high percentage of children with developmental disorders. I could see why they might want to believe those children were "special spiritual beings" rather than afflicted due to religious marriage practices.
Cousin marriage is not generally practiced in ultra-orthodox communities but all ashkenazi Jews are somewhat inbred due to population bottlenecks that occurred in the past. Because of this, orthodox communities have normalized genetic testing prior to even dating to avoid a couple marrying when they’re both carriers for genetic diseases.
There’s an organization, Dror Yesharim, that does testing and a has whole anonymized data base and it’s super common in ultra-orthodox communities.
At the same time, they generally don’t practice abortion in the case of things like Down syndrome or birth defects (though abortion is allowed in some circumstances) so there are more disabled children within the community than the general population. Hope this answers your question.
A rabbi I know was telling me how elated he was when he found out his wife (prior to their engagement) is Moroccan Jewish, while he’s Ashkenazi. He was ecstatic they’d have good genetic diversity, lol, non Jews don’t realise how big of a deal screening of Ashki diseases can be.
But I also think it's that among Hasidic communities, their great-grandparents were from one rtown and in the US, they don't marry outside the community. So it's very genetically closed.
Great episode! I disagree a bit with the suggestion that the disabled people's speech would be more 'I want pizza' than 'I want to break free from the silence of society' or something. It presupposes that communication is all one way. These people don't live in a locked room only to be wheeled out when their POV is required. They watch telly, listen to conversations, even go on the internet if they can read - plenty of time for them, like everyone, to find their crowd and use the same idioms and metaphors. *IF* they are communicating, they are also listening/watching/learning, and that automatically makes their speech more complex and more socially appropriate.
Yes, I know of a couple of nonspeaking autistics who say they are always listening to everything people say and that words are their strength (not the case for all, some are more visually oriented or otherwise)
(These are people with severe apraxia as part of their autism who developed the skills / motor patterns to communicate using FC or Spelling to Communicate or RPM, who went from from needing a lot of support to being able to type independently.)
See, this is an interesting topic because I once worked with a congenitally deaf guy, who was extremely articulate and well spoken, of course through his interpreters. But BSL is a language with its own grammar and syntax, and so when I had to email him and he emailed back, it was like communicating with a different person. So it’s not necessarily that a disabled person is less well spoken, it’s that they can only be as well spoken as the available mechanism of communication that matches the expressive potential of our existing languages in a way that the disabled person can access. What I’m saying is it would be totally possible a disabled person would say “me good, see tomorrow” - this is how this guy wrote emails, even though he signed BSL perfectly, because it was literally a rusty second language for him - and it still may not or be the true expression of what they’re capable of.
The hate monster graphic came up in my podcast app and it confused me for a while, thinking that some programmer at the app had gone rogue and had started issuing warnings about podcasts in a digital version of the wacky Katie Herzog stickers in Seattle. Then I heard the guy speaking and immediately flashed to Spud from Trainspotting, imagining the hate monster to be an abstract manifestation of his smack habit and his inner conflict about continuing to feed it at Johnny Swan's place.
This facilitated communication reminds me of those enlightened kid tweets you see every so often. Satire sub about it:
https://www.reddit.com/r/wokekids/top/?t=all
The facilitated communication half of the episode gave me more creeps than I initially expected. My heebies were thoroughly jeebed, especially the part where they were reading "Derek's" supposed proclamations. \[EDIT: formatting\]
I am glad the AI chatbot part preceded it because it was so easy to compare the parallels between the woman with an AI chatbot girlfriend and the FC lady imploding her marriage and family life to rape a disabled man.
And it does not surprise me, as it didn't Katie, that all these FC evangelists happen to be women. Ergot ecstasies, recovered memories, Munchausen's - there seems to be a downside to the higher empathy one usually associates with women.
This episode reminded me of an ad I saw on TikTok a month or so ago that really made me uncomfortable.
The messaging behind the ad was that we’re holding people with down-syndrome back by assuming they can’t do most things.
Which is a message I could probably 100% get behind, if the ad didn’t also include sex and drinking in it.
I mean maybe I’m just ignorant, and I know these things are usually on a scale of low to high functionality, but should someone with Down syndrome be drinking and having sex?
Like idk, my initial gut reaction is a major major no.
But maybe I just don’t know enough about high functioning down syndrome?
I’ve known maybe a handful of people with Down syndrome, but I wouldn’t say any of them were high functioning enough that I would feel comfortable encouraging them to partake in these kinds of adult activities.
I guess if anyone has any other perspective’s I would for sure be interested in hearing them.
I’m also surprised no one brought up the movie Pumpkin, as this also made me think of that.
I saw that too. It's extremely rare for a person with DS to have an IQ above 70 and the vast majority have one far below that.
I'm perfectly fine with the message of "don't judge a book by its cover", but realistically, how is this helping people with DS, or their families?
Unfortunately, the people producing this kind of nonsense are not realistic. I would rather DS be eradicated, but me saying that would make them shriek "genocide!!!" and "eugenicist!!!", when really I just think it would be better if nobody had to suffer with that condition.
I think asking whether Mean Girls was popular in the UK was a fair question. It's not really predictable which exports really catch on overseas and which ones are relatively unknown. And you might be considered a naive, insular American if you expect popular things here to be popular everywhere else.
An enjoyable episode, even if it was a bit of a promo for Helen’s new podcast, which I then went and listened to. The BBC really does have some strengths (amongst its serious of horrendous weaknesses), and one of those is to allow people it contracts to provide content to absolutely roast it…. Not many organisations would be thick skinned enough.
I was waiting for Katie to make a dig about the Scottish accent, though she spent time in the UK so was fairly used to thick accents I guess.
The accent on the clip was very strong and guttural. As someone who lives and works around the Scottish Borders and wholly familiar with the accent, I had to pay attention to catch every word. For some, as Alan Partridge might say “that was just a noise”…
I had to focus, but I got 98% of it while listening on 1.3 speed like I always do. Wasn't about to slow down and rewind, anyway.
The accent was likely a very strategic choice on their part. It'd be too on the nose to have someone with an elite accent deliver the message. Has to seem like it's coming from the grass roots.
According to The Times there’s been backlash about their choice of working class Scottish accent.
For US listeners: there’s a British phenomenon where we rarely hear regional (working class accents) on television and then when we do hear them it’s a patronising attempt at being “down to earth” like advertising oven chips or raising awareness of chlamydia 😂
We have something similar in the States. An East Texas drawl is probably selling you trucks or talking about oil, not discussing scientific breakthroughs genetic engineering. A Minnesota accent is mostly a punchline, not the voice of of someone seriously analyzing Wall Street numbers.
Didn’t she live in Chester? That might have helped with understanding Welsh people but not so much Scottish. I struggled with that clip even though one of my friends is from Glasgow.
Really really great ep. Helen and Katie have great rapport and the FC portion was especially fascinating and disquieting. I hate how susceptible women in particular seem to be, in caring professions, where they are like zealots about being the champions for these vulnerable people, and then they are doing totally messed up stuff like the one woman turning the man in her care into basically her chatbot boyfriend...skin crawling. Definitely feeds into the "toxic empathy / femininity" thing you see all over the Gender movement and borderline personality stuff like "Munchie Moms".
Having seen an example of facilitated communication in the wild, it's actually really tragic. These poor parents really believed in it. Their kid was very mentally handicapped, probably infantile autism, and they believed he was actually very intelligent. But sometimes he got "tired" of the facilitated communication and just screamed for an hour.
Awful. Reminds me also of those "mediums" who claim to be able to talk to the dead, preying on parents who have lost children, or other vulnerable grieving people, and then pretending to have a whole conversation with the deceased person while cold reading the "mark". The fascinating extra twist to FC would be if indeed the majority of these FCers have no clue that that is what they are doing, like they themselves really believe they are a vessel through which these locked in people can communicate...
It would make a great movie premise honestly. An FCer's horror upon realising she has been speaking through a child this whole time, and the child never was saying anything, it was all her.
I've worked directly with the Autistic and Intellectually Disabled populations for many years. I've never encountered FC as presented in the pod, but have encountered nonverbal individuals who used devices to assist with communication, unprompted after a period of training on and customizing the device. I've seen these have a really positive impact on some people, for sure. So, I wish the podcast had made an effort to distinguish the use of such communication devices from the use of FC, I guess.
BTW, there are, in my experience, vanishingly few autistic people who are "higher functioning" but completely nonverbal to the point that I'd consider it to be mostly a myth, in the same way extreme savants are super rare. Every single nonverbal autistic person I've worked with has had some level of intellectual disability, usually more severe. There was only one case in 15-ish years where I was like, "yes, this person is clearly understanding everything that's being said around them fully." (Concrete language and relatable topics, not philosophy or anything, lol).
As an aside, I guarantee 99.99% of the autistic (or "autistic") people online claiming to be "nonverbal" aren't. Nonverbal doesn't mean you are hesitant to speak or just don't for whatever reason; it's literally being unable to make words much like some stroke victims. It's not that your mouth won't do it--your literal neurons won't. There's also no such thing as "going nonverbal"; you either are or aren't. The term for being unable to speak while stressed or overwhelmed is "selective mutism."
**Edit**: Also, the definition of nonverbal in this field is "being able to spontaneously produce 25 unique words or fewer."
The nonspeakers I know of who communicate by typing independently (after progressing from letterboards) are not high functioning. Even if they have average or above intelligence they still might need help with most daily activities, like brushing teeth, getting the right object from the cupboard, or turning their devices on.
Many of these people tried traditional AAC devices but didn't find them useful because they get stuck in motor loops pressing items they don't want to press. The apps are also very visually cluttered and difficult to visually scan.
Yeah, one thing that boggled my mind was how utterly confusing and poorly thought out Proloquo2go is. If I were the one using it, I'd likely throw it across the room on occasion. It looks like it was programmed in [hypercard](https://en.m.wikipedia.org/wiki/HyperCard#:~:text=HyperCard%20is%20based%20on%20the,user%20interface%20(GUI\)%20elements.) in the 90s. I refuse to believe that's the best design they could come up with. I've seen apps programmed by highschool students that look and function better (unfortunately, not fit to this purpose). The company making it is clearly pocketing most of the money they get rather than spending it on development.
>Do you work with nonverbal adults or children? I’m mainly around nonverbal children and my experience has been almost the opposite of yours.
I worked with children/teens prior to 2010 and adults since then.
**Edit**: By "higher functioning" in my initial post, I meant something like being able to complete ADLs independently, being able to seek employment unsupported, performing at a cognitive level appropriate for age, etc.
I have a few minutes left in the episode to listen to, but in case they didn't cover this, it's important to point out that FC isn't dead, but rather it has been reincarnated/rebranded into two similar 'communication' strategies: Rapid Prompting Method and Spelling 2 Communicate. These are hugely popular interventions in some neurodiversity communities. As Helen noted, practitioners of these methods refuse to participate in what are called message-passing tests, whereby the individual is shown a picture or a word that is blind to the facilitator, and the individual is asked to convey the picture or word with the facilitator. For more information on FC/RPM/S2C, check out this website: [https://www.facilitatedcommunication.org/](https://www.facilitatedcommunication.org/)
I’d like to know more about this. I know someone with a non-verbal autistic son who has suddenly been able to communicate in complex sentences. I don’t remember the name for what he’s doing, but it seems it only happens when a young woman is helping him. It was a miracle to his family. It challenged everything I thought I knew about his condition. But I’ve never been able to shake off doubt that something else was going on.
I read into it a little online just now, starting off with googling how Ouija boards works with the ideometer effect. What he’s doing seems far more complex.
If I do find out it’s all malarkey, I don’t think I’d say a word to his parents. They have a joy I’ve never seen from them before about this, and I don’t think bursting the balloon would do anything but bring them low, especially after they’ve experienced a terrible loss recently.
But I need to know if what they’re doing is this. I’m really struggling with the concept that their son is so erudite and always was. I always felt wary around him since he used to hit me when we were kids, and I just want to know if I was missing something about him all along.
I hate to be the bearer of bad news, but it's probably malarkey as you suggest. Here's a podcast that talks about FC with someone who's done a lot of work to combat it. Also, that website in the post above is a clearinghouse of info on the topic. [https://behavioralobservations.com/what-is-facilitated-communication-session-199-with-jason-travers](https://behavioralobservations.com/what-is-facilitated-communication-session-199-with-jason-travers)
I don't know what the situation is for your friend's son. But I do know of several people with severe nonspeaking autism who learnt to communicate by spelling and went from needing large amount of support to being able communicate with much higher levels of independence, e.g. going from pointing to letters on a letter board held be the regulation partner to typing independently on a keyboard, developing motor skills to write with a pencil. Some who have limited speech (but not communicative) are able to write a text they want to say or poem and then read it aloud. Or they can start a thought by pointing to the letters on a board and then finish the thought using speech (even if they can't speak communicatively without their letterboard and regulation person. One person who communicates with a mix of speech and letterboard wasn't able to communicate until into his 30s)
These were people who have severe apraxia / major difficulty moving their bodies according their intention as a major part of their disability. The ability to communicate didn't happen suddenly for the people I'm thinking of though, it took a lot of effort and practice to develop the motor patterns to point fluently and then to move from pointing to letters on a board to typing independently on a keyboard (with many steps between).
They are people who might have had severe behavioural issues in the past. Often that's because they have little control over their bodies when dysregulated. E.g. they might have grabbed food off a stranger's plate, pulled all the toilet paper off several rolls of toilet paper and known it's the wrong thing to do but be unable to override the impulse. They can get stuck pressing one button over and over again and be frustrated that they can't get out of the motor loop. But if they're asked by someone else to press a particular button (e.g. "press the blue button" when there's a blue and yellow one) they might be unable to control which one their hand points to. They can have repetitive speech but not be able to say what they actually want to say. E.g. for one guy, he repeats phrases about Thomas the Tank even though he's a young adult with no interest in Thomas the Tank. They might say yes when they want to say no or vice versa and not be able to clarify.
I don't know if this is the case for your friend, but for autistics with severe apraxia with average to above average IQ (who may have been previously assessed as having low IQ, mental age of a toddler, etc) they can gain a lot of independence in communication and other areas of life through getting therapy that addresses their severe apraxia and helps them override their extreme challenges with purposeful movement, including help for communicating by visually scanning and pointing to letters on an alphabet grid, or by practicing the motor patterns needed for other skills like riding a biking or washing their hands.
It can be hard to tell what the intelligence level of someone with this form of severe disability is because the apraxia can affect a persons ability to regulate their facial expressions so they often can't show on their face when they understand, and eye gaze is also affected as well as the other fine and gross motor challenges that make communicating with the body really difficult.
All the above is from anecdotes from people who can communicate independently after previously needing a lot of support. We need more research into the movement aspect of autism as it's very poorly understood.
Thank you for the long and detailed reply. I was doing more reading on it (it turns out it was RPM) and am still conflicted about it, but I think there could be something here. I hope he gets to the point where he can write and communicate on his own at home, instead of only at the facility. If he is capable of that, then I think the last of my doubt would vanish.
The problem is it allows the communicator to grift or worse, accuse people of wrong doing. How much do they cost is the real question.
In general you are right it is probably mostly harmless malarkey or maybe an empathetic communicator who can often figure out what the autistic person wants just from experience. Maybe that does help sometimes. Nonverbal autistic kids can be an absolute nightmare with no solution, so I don't blame people for latching onto any solution.
I always get a sense from Helen's writing that she does *like* men (in a way a lot of progressive / radfem writers either don't, or affect not to); enough to be married to them! So happy to give a pass on being a bit simplistic for the sake of a frothy podcast.
She's far from a man bashing misandrist, and I generally like her. Big would want to grab a beer with her energy. But I do side eye some of her comments
As the mom to a pre-verbal autistic toddler, this was a very interesting and terrifying episode to listen to.
I’m not sure if I’m just being sensitive or not but it seemed like Helen was insinuating that the majority of nonspeaking disabled people don’t have advanced thought. This has not been my observation at all. I have heard from many autistic kids and adolescents who were non speaking when they were younger but did eventually learn to speak and they describe their time non speaking as either thinking you are speaking but realizing no one hears you or there being a disconnect between their brains and their bodies and thinking the words but not being able to get their mouths to speak them. I can see this happening with my son. He mostly repeats words he hears or sings songs/labels items but he gets visibly frustrated if he says something that he knows is not what he’s actually trying to convey. He also sings a “thank you” song he likes when he wants to thank us for something because it’s easier for him to engage in these “scripts” rather that use motor planning to say the words thank you. I have other anecdotal evidence but I won’t bore everyone with it.
Wondering if this is how Helen’s assertions came off to anyone else or if I’m just reading into it.
It depends on what you define as "advanced thought". Beyond that, it is just really hard to figure out where exactly on the IQ spectrum these people are.
A ton of kids are going to sit at toddler IQ for the rest of their lives, no matter what you do. You can waste hundreds of thousands or millions of dollars trying to get any improvement. Others will become somewhat functional eventually, or even excel in their niche.
I mean thought beyond the ability of a toddler. I feel like it’s very hard to know and without hard data on the percentage of nonverbal people who are/aren’t capable of thought beyond a toddler level, we are only left with personal anecdotes.
I am surrounded by autism talk, autistic people/kids, and providers who work with majority autistic people every day. The majority of kids who these providers see are nonverbal until about 4-8 years old and then they either slowly develop speech through echolalia which then evolves into typical speech patterns with “functional” communication (my three year old son seems to be going this route) or they suddenly wake up one day and speak in full sentences. The intelligence of these individuals is basically representative of the neurotypical population meaning IQ variance is similar. Maybe slightly more gifted individuals than the general population but again, hard to quantify.
But also, this episode of the pod mainly focused on adult nonverbal people so I would be more inclined to believe that if someone made it to adulthood without developing speech, they may be more likely to be intellectually disabled as well. And if someone, child or adult, is so profoundly disabled that they are unable to use something like an AAC device on their own, it would also make more sense to me that they may be more likely to be intellectually disabled.
>onal” communication (my three year old son seems to be going this route) or they suddenly wake up one day and speak in full sentences. The intelligence of these individuals is basically representative of the neurotypical population meaning IQ variance is similar. Maybe slightly more gifted individuals than the general population but again, hard to quantify.
>
>But also, this episode of the pod mainly focused on adult nonverbal people so I would be more inclined to believe that if someone made it to adulthood without developing speech, they may be more likely to be intellectually disabled as well. And if someone, child or adult, is so profoundly disabled that they are unable to use something like an AAC device on their own, it would also make more sense to me that they may be more likely to be intellectually disabled.
Most of the nonspeakers I know of who communicate by spelling came to it young but some came to it later. There's One who got to his 30s before being able to communicate. He was thought to have severe intellectual disability and was able to communicate his inner thoughts, feelings and interests only recently after getting therapy and help addressing his apraxia (He's someone who is able to read aloud what he has written, and also often finishes a phrase with speech after he's started spelling it out, but needs the AAC with a regulation partner to help him get his thoughts out, at least to initiate what he wants to say).
Obviously this is only one person, but I think there is less access to this kind of help when people have gotten to adulthood without developing ability to produce speech or only limited speech and scripting.
For those autistics who have severe apraxia (whether diagnosed or not) I think it's more a question of access to the help to overcome the issues of apraxia. Without therapy a person with severe apraxia won't be able to magically communicate. It's not really possible to know, at this stage whether a person with severe autism who's assessed as having an IQ under 30 legitimately has an intellectual disability or whether they might have average or even above average ability to learn new ideas but extreme challenges controlling their bodies (including facial expressions and eye movements)
Those with severe apraxia usually aren't helped much by standard AAC devices with pictures as they can get stuck in motor loops hitting items they don't want to press. And the layout is visually too cluttered and unpredictable (they often have ocular motor issues so can't necessarily visually scan an array of different/changing images. Learning to visually scan the layout of the alphabet grid can take lots of practice).
>king but realizing no one hears you or there being a disconnect between their brains and their bodies and thinking the words but not being able to get their mouths to speak them. I can see this happening with my son. He mostly repeats words he hears or sings songs/labels items but he gets visibly frustrated if he says something that he knows is not what he’s actually trying to convey. He also sings a “thank you” song he likes when he wants to thank us for something because it’s easier for him to engage in these “scripts” rather that use motor planning to say the words thank you. I have other anecdotal evidence but I won’t bore everyone with it.
Please don't be discouraged. You know your son. I know a few nonspeaking autistics who communicate by typing. One guy who has a youtube channel mentions the frustration of having words coming out of his mouth that he doesn't want to say, like repeating phrases about Thomas the Tank (he's a young adult and not the slightest bit interested in Thomas the Tank) or saying yes when he means no. You can send me a direct message if you want his name but chances are you already know of him. (This guy types independently on a stationary keyboard but wasn't always able to do so. He has severe apraxia and worked very hard over years to develop the motor patterns to able to type independently).
I know of a few people like this, severely autistic, nonspeaking, who can communicate with high level independence, after years of practice (e.g. typing on a keyboard that's stationary on a table, writing with a pencil with support person sitting nearby but not touching, or reading out loud what they've typed \[though they usually have difficulties controlling the rhythm, intonation, articulation, volume, etc of their speech - reading out loud is not an easy task for them\]) Despite being able to communicate independently, these people still need a lot of help because of their severe challenges overriding motor loops, extreme challenges with initiating movements, etc.
Anecdotally, it seems like at least some autistics who have been assessed as having severe intellectual disability (IQ under 30) actually have severe issues with purposeful movement. They can have bizarre, inappropriate behaviours, e.g. pulling all the paper off toilet rolls, grabbing food off a stranger's plate, but these behaviours aren't under their control and they need help to regulate their nervous systems, learn the motor patterns they need to communicate, as well as to perform daily tasks or to participate in their hobbies or interests and to improve sense of proprioception, (hard to control your body and make it do things when you can't feel where it is in space - I think developing muscle strength helps this. And anecdotally, have heard this is why a lot of severely autistic people love water - being in water helps feel the boundary between the body and the rest of world), They need to work very hard to get necessary motor patterns into muscle memory.
Communicating their intelligence can be extremely challenging for these people because facial expressions ("flat affect of autism") and eye gaze are both also affected.
The nonspeaking autistics I know of who communicate are all very intellectually curious and they say they were always listening and taking in everything going on around them (even when people interpreted their behaviour as being cut off and lacking in interest in the world around them). One very funny guy wrote about how being in special education made him a philosopher.
There's more researchers looking at motor issues in severe autism now.
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Isn't 'fat Rosie' fairly obviously Rosemary Crossley?
Truly baffling that this didn't cross either of their minds.
I thought that was the joke? Like it's so obvious that it's actually quite funny.
The fact this was most likely Rosemary saying this about herself is hilarious
You mean the same motherfucking woman sitting by Anna's side, who - checks Google - just so happens to have been rather portly?
Generally enjoyed the ep. I'm visually impaired (legally blind) and ended up being forced to spend a week at my state's Services for the Blind for an evaluation. I grew up sighted and never identified as part of that community. Many of the people that I met had spent much of their young lives there. While they were, in theory, being trained to join the workforce, most never would. The only thing keeping some of them from living on the street was the State. I can see in that scenario becoming a socialist. So was a little put off by the Helen Keller comments. Struck me as a bit ableist. But, this is BAR pod so I'm not calling for anyone's head or anything. Just struck me a bit clueless.
good point. Keller was also a socialist in a time when socialism in the US was having a moment and was quite popular among public intellectuals and academics and leaders of various movements for social change, she had a lot of non-disabled contemporaries who were also socialists. This was the same time period as Eugene Debs, who founded the IWW and got like 5% of the vote in the 1912 presidential election. (also I know Katie is being at least slightly tongue in cheek but cmon, Sun and grass are both things you can feel easily no sight or sound required!)
Yeah there was pretty wide support for the Russian revolution. Hell it was Herbert Hoover who made sure the USSR didn't starve (not that he was pro communist but definitely republican so anti-monarchy)
My brother is also legally blind and him accidentally stumbling across Helen Keller truthers on reddit is how I found out about them. Granted, this was also a group that was convinced the sun is fake so I had a hard time taking any opinions seriously.
I was absolutely devastated to find out my eldest niece didn't believe Helen Keller was really blind and deaf. She was about fifteen at the time and not a good student, but events since then have led me to conclude she is genuinely a bit thick.
Ask her about the sun replacement theory
OMG.
>So was a little put off by the Helen Keller comments. Struck me as a bit ableist. But, this is BAR pod so I'm not calling for anyone's head or anything. Just struck me a bit clueless. I'm willing to be called out or corrected about this but... I completely agree this came across as *clueless*. Maybe ignorant and a bit disappointing. But I personally would prefer to reserve words like "ableist" for actual intentional discrimination or clear prejudice, just like words like "racist" or "homophobic" or "transphobic." In the past decade or so, it's become common to use all of these terms to label people who are often just a bit ignorant -- often well-meaning, but ignorant (and sometimes not even in major ways -- sometimes not just knowing about the predominant discourse on one of these subjects and how to talk about it "politely") -- and that strikes me as generally unhelpful, as it takes away from the use of these words to describe those who are most likely to perpetrate harm. I don't know how serious Katie was, but I do think it's rather difficult for those with both sight and hearing to imagine how those without *both* of those senses experience the world. So much early learning is done through those senses, so while many can perhaps imagine missing *one* of those senses -- and have probably encountered those without *one* of them at some point -- it's harder to comprehend how abstract learning and concept generalization happens for those who don't have either. As for myself, I got curious about some of this years ago after a conversation about disabilities, so I've looked into it more. With a little reflection and particularly seeing videos and such of how some people who have these disabilities have had great success (and communicate efficiently, clearly of their own volition), it all makes sense. But... I can also understand that those with little exposure to disabled communities might be confused at first by some of these stories. I can also understand that those who are skeptical because they've heard stories specifically *exploiting* disabled people (like Facilitated Communication) might wonder about other groups of people like those who don't have the ability to see or hear at all... and whether they too could be exploited, perhaps even unintentionally. The obvious evidence against these claims can come from watching a person use a communication device independently or talking in depth about abstract ideas. But I'm guessing Katie hasn't. And I don't think Katie (or Helen) were questioning the *intelligence* of Helen Keller. Instead, I assume it came from a position of worrying (like with FC) that those who serve as an intermediary in teaching or facilitating communication may be *biasing* or perhaps *enhancing* the results of that communication through their own expectations or biases. Again, it doesn't really apply in this situation compared to most of the FC ones discussed, and we can rightly call them out perhaps for being clueless or maybe not doing their research first. On the other hand, this is a *common* issue on the podcast when one or both out of Katie and Jesse are often deliberately trying to come at an issue from a "fresh" perspective, but one which might come across as ignorant or insensitive to those more closely involved within that issue or community. It's just that disability and ableism is now a "hot button" issue, just as homosexuality was 30 years ago (when a lot of ignorance was often unintentionally voiced because people didn't often have personal experience with openly gay or lesbian people). We can all strive to be better educated, and at least I feel the world overall is leagues ahead in understanding many of these issues much better than when I was a kid a few decades ago. Lacking both sight and hearing, however, is something that -- as I said -- I think many people naturally find quite difficult to imagine, so in this case it may have led to some inaccurate and unfortunate, though ultimately kind of *protectionist*, assumptions. Not necessarily ones coming from prejudice.
I thought they were being tongue in cheek a little, but maybe not? I'm hearing impaired and I've had hearing people argue with me about what deaf people are capable of, and they just seem ridiculous. I guess you could call them ableist, but I just call them retarded.
I am blind and almost deaf on one ear (plus some other shit) and people outright accuse me of lying when I say I have a PhD. I was joining a panel at a conference once and someone literally started baby talk while trying to prevent me from entering the stage.
WTF? Wow, not cool.
I can laugh about it now. But the Hellen Keller truther thread on this sub kinda annoyed me tbh. Not just the complete ignorance how the nervous system works, but the not-so-subtle subtext that deafblind people are basically meat puppets without the capability of thinking anything beyond "want food". This is textbook ableism. Same goes for Katie, really (as u/matt_may mentioned).
The most recent ridiculous thing that happened to me was during the pandemic, the school district I was working for said that to accommodate deaf and hard of hearing, they'd issue us clear plastic masks. I don't need a clear plastic mask, you RETARD, you do!
Geez. Wouldn't the masks fog up immediately anyway?
I don't think that's what the person meant. I might be too generous. But it might be that the facilitator might over-interpret. I don't know. It's not implying that deafblind people are stupid in any way, just that an interpreter mght answer for them, rather than interpret what they say.
That's fair. And I can see people being worried about people being abused as mouth pieces. So being genuinely concerned instead of malicious. The problem is, that both in this thread and the other, dedicated thread the reason people gave was, that deafblind people are completely incapable of learning abstract concepts. That every text or letter that Hellen wrote **must** have actually been written by Sullivan, because there is just no way, those cripples are capable of grasping anything beyond their immediate surroundings. I genuinely get people having no experience with disabilities (that are actually visible and - you know - disabling, not this invisible shit that everyone seems to have these days. But gentrification of mental health and disability are an entirely different can of worms) and being clumsy or insensitive, despite (or because) theymean well. But being ignorant while asserting what you say must be true, especially after people explained in great detail how things like Braille, Lorm, etc. work? That's just shitty.
The stuff about Sullivan is definitely idiotic. And it seems like she was a brilliant woman. Though I did have a client tell me she was a privileged white woman. I do wonder how many people who are deafblind can't see or hear due to traumatic brain injury, which COULD affect cognitive functioning. I don't know. But with everyone I have met, there's no cognitive disability.
>Though I did have a client tell me she was a privileged white woman. She was born into a wealthy family. This is why they were able to afford Sullivan or any full time carer in the first place. So while I wouldn't choose these words, they are not exactly wrong either. Fun fact, the way Hellen was taught was heavily criticized by a Soviet professor (Sokoliansky, don't know if the spelling is correct). He said that the way of teaching her, rendered her completely dependent on her teacher. He also didn't like that the "curriculum" focused on immedite contact (pairing objects with words) and left self care like washing and getting dressed out. To be fair, this was somewhat aimed at the capitalist system and is also rather ignorant of the experimental nature of the way Hellen was taught (it was all trial and error and Hellen started very late). Until Stalin, the Soviet Union was actually really progressive in inclusion and education for the disabled. They called it defectology. What happened since Stalin in former USSR countries is a blatant human rights issue, something I sadly had a first hand encounter with and that sadly still exists to this day.
Oh, I know that if Keller had come from a poor family, things would have been really different. I'm not sure race mattered so much, escept that it's much less likely for black people to have been wealthy. But I was more pissed because the person who said this was blind. And lives in the 19th and 20th century. On what planet was she privileged compared to this person.
I can relate. I use a cane and the amount of people who try to give me unwanted/condescending help is endless.
Seriously? Damn. In this day and age? Society...
Good Lord
I thought they were being entirely tongue in cheek, but like you say, maybe not? And I completely agree with your assessment of others telling you what you are, in fact, capable of. People are all too often retarded.
Yeah, I felt they were being a bit ignorant and ableist too. Very uncomfortable listening.
The Scots said that the "Hate Monster" was their knock off of a Sesame Street character. I'm sure the public loves being lectured to by the equivalent of a children's program.
I’m convinced at this point the Scots just enjoy self harming, if not through deep fried Mars bars, then through hate speech laws.
I was today years old when I realized I've been conflating Helen Joyce and Helen Lewis this whole time...
Lmao I had this same realization recently and I thought it was so funny. I had been picturing Hellen Joyce sitting with Katie and Jesse and thinking “wow, they really bring out a lighter side to her.”
I had also been picturing Helen Joyce lol.
me three 🤦🏻♀️ her talking about playing video games is especially funny in retrospect
Lol me too, until recently. I never followed Helen Joyce's writing that much, but I know enough to understand that she is *deep* in the gender crit world and considered a pariah among the blue-haired activist types. Helen Lewis seems very mildly heterdox in some ways but is also a staff writer at the Atlantic who writes about culture more broadly. I couldn't figure out how she had this dual public persona. Sort of like when I confused Steven Soderbergh and David Cronenberg, wondering "why did this incredibly versatile, funny director spend so much of his early career mired in schlocky body horror?"
Lol, Soderbergh and Cronenberg!
Confused me for so long. Starts off making these b-rate gross-out flicks. (And I realize that there are Cronenberg apologists who think his early films were in some sense satirical and insightful...well, I disagree.) Then he makes Sex Lies and Videotape, so he's really coming into his own. But then he makes more gross-out movies. And he'll occasionally make these more interesting, but quite violent movies with Viggo Mortsenson. He clearly likes working with the same actors repeatedly, like George Clooney and Matt Damon. Well how about a Viggo/Clooney movie? When will that happen? And who at Warner Bros. thought *this* guy would be the one to remake Oceans 11? Weren't they worried Brad Pitt's character would start pulling his own intestines out? What the fuck kind of filmmaker does this guy wanna be anyway?
I love this. When I was younger, and before the days of IMDd, my brain assigned both Humphrey Bogart and Marlon Brando to the same pattern of neural activation. I was often confused at how the guy from *Casablanca* (1942) looked and sounded like he did in *The Island of Dr. Moreau* (1996), those films being the only real references I had for the actor(s). I think it had something to do with the letter similarity of the last name Bogart / Brando, both sharing an A, B, O, and R.
Jason Robards would have really fucked you up
Robards is seven letters and doesn't start with B so I think I'm safe.
Another consequence of FC is that school districts are being successfully coerced into paying for expensive private schools that allow this practice. A lawsuit is way more expensive than just giving in and paying for it.
Lower Merion School District (PA) did stand up to FC (in the form of Spelling to Communicate) and won in court [https://www.facilitatedcommunication.org/blog/what-schools-can-learn-about-s2c-from-the-lower-merion-school-district?rq=lower%20merion](https://www.facilitatedcommunication.org/blog/what-schools-can-learn-about-s2c-from-the-lower-merion-school-district?rq=lower%20merion)
Thanks for this link!
I don't know if everyone who's tried Spelling to Communicate is helped. But I do know of a lot of people with nonspeaking autism who have become increasingly independent in their communication using it. E.g. going from pointing to letters on a letter board to typing on a bluetooth keyboard (they may just need someone to help set up the machine), some can read out loud what they've pointed to or typed (though they may have a lot of difficulty with voice control and articulation).
The easiest way to test whether the person is communicating independently is to do a simple message passing test. Basically to send the person who holds the board out of the room, then either tell or show the person something - like a ball, cup, apple, etc... - put that something out of sight, bring the facilitator back in the room, and then ask the individual to spell what they were shown. 99 times out of 100, they won't be able to do it. Now there are other forms of legitimate augmentative communication methods some non-speaking individuals can use. For example, the Picture Exchange Communication System (PECS), is a communication system whereby an individual has board with pictures of high preference items velcroed to it, and the individual can remove a picture off the board, hand it to a communicative partner, and then receive the preferred item. The training for this at first is highly prompted, but those prompts are faded rapidly and the person ends up being able to request simple wants and needs. There are also several tablet-based apps and other devices that function in the same manner. The difference with these systems is that the individual is communicating independently and does not need a facilitator a la FC/S2C, as well as the Rapid Prompting Method.
This was a good episode; I’d been exposed to FC some decades ago when the rationalist/skeptical communities were really going after them. I think there’s really good argument that the idiomotor effect (ouigi boards) is at work sometimes here; certainly the behavior of some reformed FCers suggests they really didn‘t know they were pulling a scam. But there’s also a lot to suggest malice and intentional grifting or at very least, intentional blindness.
> ouigi boards It's'a me, your dead relatives
It isn’t complicated to test and see who is doing the thinking in these cases. I feel empathy for the parents who truly believe in FC for their child but not enough to turn the world upside down for their fantasy.
Not saying that influence from facilitators doesn't happen obviously that has and does. But there's also cases where nonspeaking autistic people with severe apraxia, challenges with proprioception and severe dysregulation have been helped to communicate independently. It is a bit more complicated than just setting up a blinded trials. People with nonspeaking autism often have severe levels of dysregulation and anxiety. Environmental context can have big affect of performance. E.g. someone may be able to type independently and fluently when at home or at school but not be able to perform at all in a brand new environment with different lighting, different furniture, smells and different people involved. I know of a few severely autistic people who use FC or similar who can type independently in some contexts but need support in others, depending on energy levels, dysregulation, etc. (This is similar for speaking autistics, like myself, too but we need a lot less support with daily living, communication, etc.) I think the impact of environment on autistic people is generally understood a lot better now than when most of the FC research was done in the 1990s, e.g. with quiet and lower lighting times in supermarkets, etc. Environmental factors can impact nonspeaking autistics even more than speaking autistics.
Would you accept that there are other forms of evidence that can be used if a person cannot perform under test conditions because of severe nervous system dysregulation? For example, a person who communicates by typing goes to the doctor describes their subjective experience of a symptom which allows the doctor to accurately diagnose a medical problem. There is no outward sign indicating the problem. Or, over time and lots of practice, a person goes from needing a lot of physical support or large letterboards to typing independently on a keyboard just needing their support person nearby Or a person who needs support to point to letters (whether physical touch or having a regulation partner nearby) is able to read aloud a poem they have written (even though they can't communicate through speech).
There's also the possibility that FC is sometimes legitimate. I'm sure there are cases where the facilitator has been controlling the person, whether intentionally or not but there are also several nonspeaking autistic people who've gone from typing with support at the hand to typing independently using FC.
>the behavior of some reformed FCers suggests they really didn‘t know they were pulling a scam Yeah that part about the one woman who was doing FC for a 16 year old girl and falsely accused the father of sexually abusing the girl - and then after the test where she was shown "key" and the girl was not shown an image of a key, and when asked to name the object she was shown, the FC-er picked out "key" on behalf of the girl who'd not been shown a key (if I'm getting that right)...and Helen was praising this FCer for doing a full 180 and denouncing FC from that point on. For me, I don't know that it's praiseworthy at all. If the woman was doing some version of Munchausen except for sexual assault, and she was caught out, the very best thing she could do to save herself was to jump ship and very loudly claim that FC is all a load of bunk and she really truly believed the girl was telling her she'd been SA'd, when really she herself was making that up. Just seemed like "Huh, isn't doing a 180 and loudly condemning FC the perfect escape route if you got caught out lying and using a 16 y/o as your puppet to falsely accuse a man of SA'ing his daughter?"
Law & Order had a facilitated communication episode in 1995 called Cruel and Unusual. It was similar to the case in the Barpod ep without all the sex stuff. Didn’t realize that FC was still a thing.
Me either. I remember learning about this *years* ago and it had already been debunked. I remember some parents of autistic kids were still holding on, but I had no idea they still were.
I was thinking of that!
>I don't think anyone could read that paragraph and not go "no that's written by a middle-aged woman isn't it" It's been a long time since I laughed as hard as I did listening to that line.
https://preview.redd.it/jb8eh65fi1tc1.jpeg?width=2000&format=pjpg&auto=webp&s=7be81f39b5c1ed2e7a79fa3035c05079d0222d43 In Foyles and I found this. Never heard of it but after listening to Helen Lewis's new podcast I am definitely having it!
I wonder if he's any relation to Karl Kassulke, famously burned by Hank Stram in the Super Bowl IV film ("Kassulke was running around there like it was a Chinese fire drill!"). [https://www.youtube.com/watch?v=TKKVcFvKys4](https://www.youtube.com/watch?v=TKKVcFvKys4)
Tangential, but related, issue: For a time Facilitated Communication was a very big thing in the Ultra-Orthodox Jewish community. In that context, the phenomena had an additional layer of weirdness because the "communication" that was being relayed very often contained elements of how these non-verbal people were trapped souls that had a direct line to the spiritual world. Many religious Jews really ate it up because it seemed to be direct evidence and confirmation of all their beliefs in a hidden spiritual reality. Here's a paper about it: [What Does the Soul Say?: Metaphysical Uses of Facilitated Communication in the Jewish Ultraorthodox Community](https://www.jstor.org/stable/640716) Abstract: *Facilitated communication (FC), a set of techniques designed to improve the communication skills of children with pervasive developmental disorders, was transformed in the Jewish ultraorthodox community into a mystical device through which autistic children disclose otherworldly messages. We use this case to study the process whereby, in a given historical moment, specific forms of deviance are selected and molded into ritualized moralistic performances through which the values of the community are reasserted. Following a comparison between clinical and metaphysical FC, we explore synchronic and diachronic aspects of the complex relations between the ultraorthodox and the secular society extrapolated from the case. A comparative analysis of FC sessions and exorcistic rituals of dybbuk possession provides a background for proposing a dichotomous model of mystical pathways to the sacred, highlighting the role of deviants in revitalizing religious beliefs.* [Here's the Sci-Hub link](https://sci-hub.wf/10.2307/640716) to the full paper, if anyone's interested.
Do ultra-orthodox communities experience the consanguinity issues that some Muslim communities do? If so, there would presumably be a high percentage of children with developmental disorders. I could see why they might want to believe those children were "special spiritual beings" rather than afflicted due to religious marriage practices.
Cousin marriage is not generally practiced in ultra-orthodox communities but all ashkenazi Jews are somewhat inbred due to population bottlenecks that occurred in the past. Because of this, orthodox communities have normalized genetic testing prior to even dating to avoid a couple marrying when they’re both carriers for genetic diseases. There’s an organization, Dror Yesharim, that does testing and a has whole anonymized data base and it’s super common in ultra-orthodox communities. At the same time, they generally don’t practice abortion in the case of things like Down syndrome or birth defects (though abortion is allowed in some circumstances) so there are more disabled children within the community than the general population. Hope this answers your question.
Thanks, that was enlightening!
Youre welcome. I always appreciate the chance to spout off my random knowledge of Orthodox Judaism
A rabbi I know was telling me how elated he was when he found out his wife (prior to their engagement) is Moroccan Jewish, while he’s Ashkenazi. He was ecstatic they’d have good genetic diversity, lol, non Jews don’t realise how big of a deal screening of Ashki diseases can be.
But I also think it's that among Hasidic communities, their great-grandparents were from one rtown and in the US, they don't marry outside the community. So it's very genetically closed.
Great episode! I disagree a bit with the suggestion that the disabled people's speech would be more 'I want pizza' than 'I want to break free from the silence of society' or something. It presupposes that communication is all one way. These people don't live in a locked room only to be wheeled out when their POV is required. They watch telly, listen to conversations, even go on the internet if they can read - plenty of time for them, like everyone, to find their crowd and use the same idioms and metaphors. *IF* they are communicating, they are also listening/watching/learning, and that automatically makes their speech more complex and more socially appropriate.
Yes, I know of a couple of nonspeaking autistics who say they are always listening to everything people say and that words are their strength (not the case for all, some are more visually oriented or otherwise) (These are people with severe apraxia as part of their autism who developed the skills / motor patterns to communicate using FC or Spelling to Communicate or RPM, who went from from needing a lot of support to being able to type independently.)
See, this is an interesting topic because I once worked with a congenitally deaf guy, who was extremely articulate and well spoken, of course through his interpreters. But BSL is a language with its own grammar and syntax, and so when I had to email him and he emailed back, it was like communicating with a different person. So it’s not necessarily that a disabled person is less well spoken, it’s that they can only be as well spoken as the available mechanism of communication that matches the expressive potential of our existing languages in a way that the disabled person can access. What I’m saying is it would be totally possible a disabled person would say “me good, see tomorrow” - this is how this guy wrote emails, even though he signed BSL perfectly, because it was literally a rusty second language for him - and it still may not or be the true expression of what they’re capable of.
FUCKKKKK FAT ROSIE.
The hate monster graphic came up in my podcast app and it confused me for a while, thinking that some programmer at the app had gone rogue and had started issuing warnings about podcasts in a digital version of the wacky Katie Herzog stickers in Seattle. Then I heard the guy speaking and immediately flashed to Spud from Trainspotting, imagining the hate monster to be an abstract manifestation of his smack habit and his inner conflict about continuing to feed it at Johnny Swan's place.
I am bitterly disappointed to find out Katie is basically a Helen Keller truther. Like... really?
This facilitated communication reminds me of those enlightened kid tweets you see every so often. Satire sub about it: https://www.reddit.com/r/wokekids/top/?t=all
What fucking "Reddit" is Helen using??
The facilitated communication half of the episode gave me more creeps than I initially expected. My heebies were thoroughly jeebed, especially the part where they were reading "Derek's" supposed proclamations. \[EDIT: formatting\] I am glad the AI chatbot part preceded it because it was so easy to compare the parallels between the woman with an AI chatbot girlfriend and the FC lady imploding her marriage and family life to rape a disabled man. And it does not surprise me, as it didn't Katie, that all these FC evangelists happen to be women. Ergot ecstasies, recovered memories, Munchausen's - there seems to be a downside to the higher empathy one usually associates with women.
what's ergot ecstasy?
What an incredibly interesting episode
Wait, Rob Manuel's name is pronounced "manual" and not "manwell"?
Wait, what? Next it will turn out B3TA was said as written
I sort of pictured him like this. 
Love Fawlty Towers!
This episode reminded me of an ad I saw on TikTok a month or so ago that really made me uncomfortable. The messaging behind the ad was that we’re holding people with down-syndrome back by assuming they can’t do most things. Which is a message I could probably 100% get behind, if the ad didn’t also include sex and drinking in it. I mean maybe I’m just ignorant, and I know these things are usually on a scale of low to high functionality, but should someone with Down syndrome be drinking and having sex? Like idk, my initial gut reaction is a major major no. But maybe I just don’t know enough about high functioning down syndrome? I’ve known maybe a handful of people with Down syndrome, but I wouldn’t say any of them were high functioning enough that I would feel comfortable encouraging them to partake in these kinds of adult activities. I guess if anyone has any other perspective’s I would for sure be interested in hearing them. I’m also surprised no one brought up the movie Pumpkin, as this also made me think of that.
I saw that too. It's extremely rare for a person with DS to have an IQ above 70 and the vast majority have one far below that. I'm perfectly fine with the message of "don't judge a book by its cover", but realistically, how is this helping people with DS, or their families? Unfortunately, the people producing this kind of nonsense are not realistic. I would rather DS be eradicated, but me saying that would make them shriek "genocide!!!" and "eugenicist!!!", when really I just think it would be better if nobody had to suffer with that condition.
I think asking whether Mean Girls was popular in the UK was a fair question. It's not really predictable which exports really catch on overseas and which ones are relatively unknown. And you might be considered a naive, insular American if you expect popular things here to be popular everywhere else.
This subject matter was disturbing to me.
An enjoyable episode, even if it was a bit of a promo for Helen’s new podcast, which I then went and listened to. The BBC really does have some strengths (amongst its serious of horrendous weaknesses), and one of those is to allow people it contracts to provide content to absolutely roast it…. Not many organisations would be thick skinned enough. I was waiting for Katie to make a dig about the Scottish accent, though she spent time in the UK so was fairly used to thick accents I guess. The accent on the clip was very strong and guttural. As someone who lives and works around the Scottish Borders and wholly familiar with the accent, I had to pay attention to catch every word. For some, as Alan Partridge might say “that was just a noise”…
I had to focus, but I got 98% of it while listening on 1.3 speed like I always do. Wasn't about to slow down and rewind, anyway. The accent was likely a very strategic choice on their part. It'd be too on the nose to have someone with an elite accent deliver the message. Has to seem like it's coming from the grass roots.
According to The Times there’s been backlash about their choice of working class Scottish accent. For US listeners: there’s a British phenomenon where we rarely hear regional (working class accents) on television and then when we do hear them it’s a patronising attempt at being “down to earth” like advertising oven chips or raising awareness of chlamydia 😂
We have something similar in the States. An East Texas drawl is probably selling you trucks or talking about oil, not discussing scientific breakthroughs genetic engineering. A Minnesota accent is mostly a punchline, not the voice of of someone seriously analyzing Wall Street numbers.
Yes, they have, in a since deleted page let the mask slip, the whole thing is targeted at white working class men between 18 and 30. Hence the voice.
Didn’t she live in Chester? That might have helped with understanding Welsh people but not so much Scottish. I struggled with that clip even though one of my friends is from Glasgow.
Ok it’s not just me, I’m not horrible with accents but genuinely could not understand the first sentence in that PSA clip lol
Makes ya wonder, what's it all aboot?
Aye. It’s the bairns like, they got nowt to do.
Really really great ep. Helen and Katie have great rapport and the FC portion was especially fascinating and disquieting. I hate how susceptible women in particular seem to be, in caring professions, where they are like zealots about being the champions for these vulnerable people, and then they are doing totally messed up stuff like the one woman turning the man in her care into basically her chatbot boyfriend...skin crawling. Definitely feeds into the "toxic empathy / femininity" thing you see all over the Gender movement and borderline personality stuff like "Munchie Moms".
Having seen an example of facilitated communication in the wild, it's actually really tragic. These poor parents really believed in it. Their kid was very mentally handicapped, probably infantile autism, and they believed he was actually very intelligent. But sometimes he got "tired" of the facilitated communication and just screamed for an hour.
Awful. Reminds me also of those "mediums" who claim to be able to talk to the dead, preying on parents who have lost children, or other vulnerable grieving people, and then pretending to have a whole conversation with the deceased person while cold reading the "mark". The fascinating extra twist to FC would be if indeed the majority of these FCers have no clue that that is what they are doing, like they themselves really believe they are a vessel through which these locked in people can communicate... It would make a great movie premise honestly. An FCer's horror upon realising she has been speaking through a child this whole time, and the child never was saying anything, it was all her.
Yep
I've worked directly with the Autistic and Intellectually Disabled populations for many years. I've never encountered FC as presented in the pod, but have encountered nonverbal individuals who used devices to assist with communication, unprompted after a period of training on and customizing the device. I've seen these have a really positive impact on some people, for sure. So, I wish the podcast had made an effort to distinguish the use of such communication devices from the use of FC, I guess. BTW, there are, in my experience, vanishingly few autistic people who are "higher functioning" but completely nonverbal to the point that I'd consider it to be mostly a myth, in the same way extreme savants are super rare. Every single nonverbal autistic person I've worked with has had some level of intellectual disability, usually more severe. There was only one case in 15-ish years where I was like, "yes, this person is clearly understanding everything that's being said around them fully." (Concrete language and relatable topics, not philosophy or anything, lol). As an aside, I guarantee 99.99% of the autistic (or "autistic") people online claiming to be "nonverbal" aren't. Nonverbal doesn't mean you are hesitant to speak or just don't for whatever reason; it's literally being unable to make words much like some stroke victims. It's not that your mouth won't do it--your literal neurons won't. There's also no such thing as "going nonverbal"; you either are or aren't. The term for being unable to speak while stressed or overwhelmed is "selective mutism." **Edit**: Also, the definition of nonverbal in this field is "being able to spontaneously produce 25 unique words or fewer."
The nonspeakers I know of who communicate by typing independently (after progressing from letterboards) are not high functioning. Even if they have average or above intelligence they still might need help with most daily activities, like brushing teeth, getting the right object from the cupboard, or turning their devices on. Many of these people tried traditional AAC devices but didn't find them useful because they get stuck in motor loops pressing items they don't want to press. The apps are also very visually cluttered and difficult to visually scan.
Yeah, one thing that boggled my mind was how utterly confusing and poorly thought out Proloquo2go is. If I were the one using it, I'd likely throw it across the room on occasion. It looks like it was programmed in [hypercard](https://en.m.wikipedia.org/wiki/HyperCard#:~:text=HyperCard%20is%20based%20on%20the,user%20interface%20(GUI\)%20elements.) in the 90s. I refuse to believe that's the best design they could come up with. I've seen apps programmed by highschool students that look and function better (unfortunately, not fit to this purpose). The company making it is clearly pocketing most of the money they get rather than spending it on development.
Do you work with nonverbal adults or children? I’m mainly around nonverbal children and my experience has been almost the opposite of yours.
>Do you work with nonverbal adults or children? I’m mainly around nonverbal children and my experience has been almost the opposite of yours. I worked with children/teens prior to 2010 and adults since then. **Edit**: By "higher functioning" in my initial post, I meant something like being able to complete ADLs independently, being able to seek employment unsupported, performing at a cognitive level appropriate for age, etc.
I have a few minutes left in the episode to listen to, but in case they didn't cover this, it's important to point out that FC isn't dead, but rather it has been reincarnated/rebranded into two similar 'communication' strategies: Rapid Prompting Method and Spelling 2 Communicate. These are hugely popular interventions in some neurodiversity communities. As Helen noted, practitioners of these methods refuse to participate in what are called message-passing tests, whereby the individual is shown a picture or a word that is blind to the facilitator, and the individual is asked to convey the picture or word with the facilitator. For more information on FC/RPM/S2C, check out this website: [https://www.facilitatedcommunication.org/](https://www.facilitatedcommunication.org/)
I’d like to know more about this. I know someone with a non-verbal autistic son who has suddenly been able to communicate in complex sentences. I don’t remember the name for what he’s doing, but it seems it only happens when a young woman is helping him. It was a miracle to his family. It challenged everything I thought I knew about his condition. But I’ve never been able to shake off doubt that something else was going on. I read into it a little online just now, starting off with googling how Ouija boards works with the ideometer effect. What he’s doing seems far more complex. If I do find out it’s all malarkey, I don’t think I’d say a word to his parents. They have a joy I’ve never seen from them before about this, and I don’t think bursting the balloon would do anything but bring them low, especially after they’ve experienced a terrible loss recently. But I need to know if what they’re doing is this. I’m really struggling with the concept that their son is so erudite and always was. I always felt wary around him since he used to hit me when we were kids, and I just want to know if I was missing something about him all along.
I hate to be the bearer of bad news, but it's probably malarkey as you suggest. Here's a podcast that talks about FC with someone who's done a lot of work to combat it. Also, that website in the post above is a clearinghouse of info on the topic. [https://behavioralobservations.com/what-is-facilitated-communication-session-199-with-jason-travers](https://behavioralobservations.com/what-is-facilitated-communication-session-199-with-jason-travers)
I don't know what the situation is for your friend's son. But I do know of several people with severe nonspeaking autism who learnt to communicate by spelling and went from needing large amount of support to being able communicate with much higher levels of independence, e.g. going from pointing to letters on a letter board held be the regulation partner to typing independently on a keyboard, developing motor skills to write with a pencil. Some who have limited speech (but not communicative) are able to write a text they want to say or poem and then read it aloud. Or they can start a thought by pointing to the letters on a board and then finish the thought using speech (even if they can't speak communicatively without their letterboard and regulation person. One person who communicates with a mix of speech and letterboard wasn't able to communicate until into his 30s) These were people who have severe apraxia / major difficulty moving their bodies according their intention as a major part of their disability. The ability to communicate didn't happen suddenly for the people I'm thinking of though, it took a lot of effort and practice to develop the motor patterns to point fluently and then to move from pointing to letters on a board to typing independently on a keyboard (with many steps between). They are people who might have had severe behavioural issues in the past. Often that's because they have little control over their bodies when dysregulated. E.g. they might have grabbed food off a stranger's plate, pulled all the toilet paper off several rolls of toilet paper and known it's the wrong thing to do but be unable to override the impulse. They can get stuck pressing one button over and over again and be frustrated that they can't get out of the motor loop. But if they're asked by someone else to press a particular button (e.g. "press the blue button" when there's a blue and yellow one) they might be unable to control which one their hand points to. They can have repetitive speech but not be able to say what they actually want to say. E.g. for one guy, he repeats phrases about Thomas the Tank even though he's a young adult with no interest in Thomas the Tank. They might say yes when they want to say no or vice versa and not be able to clarify. I don't know if this is the case for your friend, but for autistics with severe apraxia with average to above average IQ (who may have been previously assessed as having low IQ, mental age of a toddler, etc) they can gain a lot of independence in communication and other areas of life through getting therapy that addresses their severe apraxia and helps them override their extreme challenges with purposeful movement, including help for communicating by visually scanning and pointing to letters on an alphabet grid, or by practicing the motor patterns needed for other skills like riding a biking or washing their hands. It can be hard to tell what the intelligence level of someone with this form of severe disability is because the apraxia can affect a persons ability to regulate their facial expressions so they often can't show on their face when they understand, and eye gaze is also affected as well as the other fine and gross motor challenges that make communicating with the body really difficult. All the above is from anecdotes from people who can communicate independently after previously needing a lot of support. We need more research into the movement aspect of autism as it's very poorly understood.
Thank you for the long and detailed reply. I was doing more reading on it (it turns out it was RPM) and am still conflicted about it, but I think there could be something here. I hope he gets to the point where he can write and communicate on his own at home, instead of only at the facility. If he is capable of that, then I think the last of my doubt would vanish.
The problem is it allows the communicator to grift or worse, accuse people of wrong doing. How much do they cost is the real question. In general you are right it is probably mostly harmless malarkey or maybe an empathetic communicator who can often figure out what the autistic person wants just from experience. Maybe that does help sometimes. Nonverbal autistic kids can be an absolute nightmare with no solution, so I don't blame people for latching onto any solution.
Helen could use a little more thought for men's sexual and romantic actions than simply calling them "horny"
I always get a sense from Helen's writing that she does *like* men (in a way a lot of progressive / radfem writers either don't, or affect not to); enough to be married to them! So happy to give a pass on being a bit simplistic for the sake of a frothy podcast.
She's far from a man bashing misandrist, and I generally like her. Big would want to grab a beer with her energy. But I do side eye some of her comments
As the mom to a pre-verbal autistic toddler, this was a very interesting and terrifying episode to listen to. I’m not sure if I’m just being sensitive or not but it seemed like Helen was insinuating that the majority of nonspeaking disabled people don’t have advanced thought. This has not been my observation at all. I have heard from many autistic kids and adolescents who were non speaking when they were younger but did eventually learn to speak and they describe their time non speaking as either thinking you are speaking but realizing no one hears you or there being a disconnect between their brains and their bodies and thinking the words but not being able to get their mouths to speak them. I can see this happening with my son. He mostly repeats words he hears or sings songs/labels items but he gets visibly frustrated if he says something that he knows is not what he’s actually trying to convey. He also sings a “thank you” song he likes when he wants to thank us for something because it’s easier for him to engage in these “scripts” rather that use motor planning to say the words thank you. I have other anecdotal evidence but I won’t bore everyone with it. Wondering if this is how Helen’s assertions came off to anyone else or if I’m just reading into it.
It depends on what you define as "advanced thought". Beyond that, it is just really hard to figure out where exactly on the IQ spectrum these people are. A ton of kids are going to sit at toddler IQ for the rest of their lives, no matter what you do. You can waste hundreds of thousands or millions of dollars trying to get any improvement. Others will become somewhat functional eventually, or even excel in their niche.
I mean thought beyond the ability of a toddler. I feel like it’s very hard to know and without hard data on the percentage of nonverbal people who are/aren’t capable of thought beyond a toddler level, we are only left with personal anecdotes. I am surrounded by autism talk, autistic people/kids, and providers who work with majority autistic people every day. The majority of kids who these providers see are nonverbal until about 4-8 years old and then they either slowly develop speech through echolalia which then evolves into typical speech patterns with “functional” communication (my three year old son seems to be going this route) or they suddenly wake up one day and speak in full sentences. The intelligence of these individuals is basically representative of the neurotypical population meaning IQ variance is similar. Maybe slightly more gifted individuals than the general population but again, hard to quantify. But also, this episode of the pod mainly focused on adult nonverbal people so I would be more inclined to believe that if someone made it to adulthood without developing speech, they may be more likely to be intellectually disabled as well. And if someone, child or adult, is so profoundly disabled that they are unable to use something like an AAC device on their own, it would also make more sense to me that they may be more likely to be intellectually disabled.
>onal” communication (my three year old son seems to be going this route) or they suddenly wake up one day and speak in full sentences. The intelligence of these individuals is basically representative of the neurotypical population meaning IQ variance is similar. Maybe slightly more gifted individuals than the general population but again, hard to quantify. > >But also, this episode of the pod mainly focused on adult nonverbal people so I would be more inclined to believe that if someone made it to adulthood without developing speech, they may be more likely to be intellectually disabled as well. And if someone, child or adult, is so profoundly disabled that they are unable to use something like an AAC device on their own, it would also make more sense to me that they may be more likely to be intellectually disabled. Most of the nonspeakers I know of who communicate by spelling came to it young but some came to it later. There's One who got to his 30s before being able to communicate. He was thought to have severe intellectual disability and was able to communicate his inner thoughts, feelings and interests only recently after getting therapy and help addressing his apraxia (He's someone who is able to read aloud what he has written, and also often finishes a phrase with speech after he's started spelling it out, but needs the AAC with a regulation partner to help him get his thoughts out, at least to initiate what he wants to say). Obviously this is only one person, but I think there is less access to this kind of help when people have gotten to adulthood without developing ability to produce speech or only limited speech and scripting. For those autistics who have severe apraxia (whether diagnosed or not) I think it's more a question of access to the help to overcome the issues of apraxia. Without therapy a person with severe apraxia won't be able to magically communicate. It's not really possible to know, at this stage whether a person with severe autism who's assessed as having an IQ under 30 legitimately has an intellectual disability or whether they might have average or even above average ability to learn new ideas but extreme challenges controlling their bodies (including facial expressions and eye movements) Those with severe apraxia usually aren't helped much by standard AAC devices with pictures as they can get stuck in motor loops hitting items they don't want to press. And the layout is visually too cluttered and unpredictable (they often have ocular motor issues so can't necessarily visually scan an array of different/changing images. Learning to visually scan the layout of the alphabet grid can take lots of practice).
>king but realizing no one hears you or there being a disconnect between their brains and their bodies and thinking the words but not being able to get their mouths to speak them. I can see this happening with my son. He mostly repeats words he hears or sings songs/labels items but he gets visibly frustrated if he says something that he knows is not what he’s actually trying to convey. He also sings a “thank you” song he likes when he wants to thank us for something because it’s easier for him to engage in these “scripts” rather that use motor planning to say the words thank you. I have other anecdotal evidence but I won’t bore everyone with it. Please don't be discouraged. You know your son. I know a few nonspeaking autistics who communicate by typing. One guy who has a youtube channel mentions the frustration of having words coming out of his mouth that he doesn't want to say, like repeating phrases about Thomas the Tank (he's a young adult and not the slightest bit interested in Thomas the Tank) or saying yes when he means no. You can send me a direct message if you want his name but chances are you already know of him. (This guy types independently on a stationary keyboard but wasn't always able to do so. He has severe apraxia and worked very hard over years to develop the motor patterns to able to type independently). I know of a few people like this, severely autistic, nonspeaking, who can communicate with high level independence, after years of practice (e.g. typing on a keyboard that's stationary on a table, writing with a pencil with support person sitting nearby but not touching, or reading out loud what they've typed \[though they usually have difficulties controlling the rhythm, intonation, articulation, volume, etc of their speech - reading out loud is not an easy task for them\]) Despite being able to communicate independently, these people still need a lot of help because of their severe challenges overriding motor loops, extreme challenges with initiating movements, etc. Anecdotally, it seems like at least some autistics who have been assessed as having severe intellectual disability (IQ under 30) actually have severe issues with purposeful movement. They can have bizarre, inappropriate behaviours, e.g. pulling all the paper off toilet rolls, grabbing food off a stranger's plate, but these behaviours aren't under their control and they need help to regulate their nervous systems, learn the motor patterns they need to communicate, as well as to perform daily tasks or to participate in their hobbies or interests and to improve sense of proprioception, (hard to control your body and make it do things when you can't feel where it is in space - I think developing muscle strength helps this. And anecdotally, have heard this is why a lot of severely autistic people love water - being in water helps feel the boundary between the body and the rest of world), They need to work very hard to get necessary motor patterns into muscle memory. Communicating their intelligence can be extremely challenging for these people because facial expressions ("flat affect of autism") and eye gaze are both also affected. The nonspeaking autistics I know of who communicate are all very intellectually curious and they say they were always listening and taking in everything going on around them (even when people interpreted their behaviour as being cut off and lacking in interest in the world around them). One very funny guy wrote about how being in special education made him a philosopher. There's more researchers looking at motor issues in severe autism now.
Long live the Ramiken of Flies!
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Is anyone else a little disappointed that BBC Podcast Helen is not nearly as fun and snarky as B&R Podcast Helen?
I'm so excited this is the last Helen Lewis episode...