Autism is a World

March 29, 2010 7:46 AM

Being looked upon as feebleminded is something I have been forced to endure my entire life. What an extremely difficult hole to have to climb out of, to fight for your own intelligence.
posted by ExitPursuedByBear (40 comments total)

Sorry, forgot to warn about Youtube links.
posted by ExitPursuedByBear at 7:47 AM on March 29, 2010

I couldn't possibly recommend this more - The Horse Boy.
posted by gman at 8:03 AM on March 29, 2010

the text is gone and I never understand the spoken words well enough
posted by infini at 8:42 AM on March 29, 2010

This is also a very worthwhile link for anyone new to thinking about autism
posted by Blasdelb at 8:59 AM on March 29, 2010

I was glad for the Sue Rubin link at the end or I would not have known what the post was about. YT is blocked where I work. Thanks. I am interested in knowing more about autism.
posted by beelzbubba at 9:14 AM on March 29, 2010

Facilitated communication- The procedure is controversial, since a majority of peer reviewed scientific studies conclude that the typed language output attributed to the clients is directed or systematically determined by the therapists who provide facilitated assistance.
posted by bhnyc at 9:30 AM on March 29, 2010 [9 favorites]

reminds me of a story about a dancer, who fidgeted too much in school
posted by infini at 10:05 AM on March 29, 2010

This is probably confirmation bias at work, but what causes the chubby/flat face effect of so many autistics? I found a bunch of facial shape studies, but none provided a coherent single theory.

Certainly there seems to be a strong tendency to a square face with a button nose and large cheeks.
posted by Phalene at 10:31 AM on March 29, 2010

bhnyc: I have a real problem with so-called facilitated communication, which is really little more than the charlatanry of "communicating with the dead" or the "pet psychic" hucksters on TV. The recent post and subsequent debunking about a comatose man "communicating" really drives the point home about how exploitative this crap can be.

However, this video shows Sue pointing at letters on a keyboard to spell out words and sentences, and I certainly wouldn't say her communication falls into that category. Nobody is putting those words into her head, but her.
posted by The Winsome Parker Lewis at 10:53 AM on March 29, 2010

But in this video, and in other programs I've seen, it appears, at least to me, that the caregiver is the one moving the keyboard around so the 'correct' letter is pressed. Or else the caregiver spells the word, and Sue presses the button a second later.

It all seems like hocus-pocus to me. As I heard Sue do some inappropriate vocalizations in her college classroom, I just felt like there was no way that this young woman is actually getting anything out of the material presented. I assume that her caregivers were reading all of her assignments to her - one of them sat in the classroom and took all her notes - as Sue sat playing with her spoons (they give her comfort).

posted by anazgnos at 10:56 AM on March 29, 2010

However, this video shows Sue pointing at letters on a keyboard to spell out words and sentences, and I certainly wouldn't say her communication falls into that category. Nobody is putting those words into her head, but her.

Can she do it when it's just her and the keyboard alone? If not, the words could still very easily still be those of the facilitator. The facilitator holds the keyboard; she could be subconsciously cueing Sue without even knowing it.

Does anyone know whether Sue has demonstrated independent communication under verifiable conditions?
posted by vorfeed at 11:26 AM on March 29, 2010 [1 favorite]

I don't know. I keep watching the typing parts over and over again and I'm not convinced, from what's shown in the video, that there's anything misleading going on there. Sue points at a letter, then her caregiver says the letter aloud (not the reverse). The keyboard moves a bit as it's being held aloft, but not enough to suggest particular spellings like with a ouija board.

It's possible that editing is hiding the causality here, but from the material as it's presented, I believe it's real. Her web site is written in her voice; it would be interesting to see how that and her personal email are maintained.
posted by The Winsome Parker Lewis at 11:50 AM on March 29, 2010

In the second video, near the end, the woman asks Sue, "Do I get to ask you any questions?" Sue responds, very clearly typing out the words, "Not yet," followed by Sue visibly smiling and laughing. That's just one example that I've seen so far.
posted by Baby_Balrog at 12:03 PM on March 29, 2010

It all seems like hocus-pocus to me. As I heard Sue do some inappropriate vocalizations in her college classroom, I just felt like there was no way that this young woman is actually getting anything out of the material presented.
....

Anyone who thinks this is "fake" is my new Biggest Asshole of the Day.

She is typing the f*cking words RIGHT ON CAMERA, being interviewed by experts, surrounded by obviously loving (and frustrated) friends and family...what do you propose, that it's all a RUSE?

That all these people are trying to make someone with a 24 IQ appear to have a 133 IQ and get a f*cking degree?

Isn't it much more likely that you have no idea what you're talking about?

Please take the time to kiss all of my ass, and hers.
posted by chronkite at 12:11 PM on March 29, 2010 [2 favorites]

In the second video, near the end, the woman asks Sue, "Do I get to ask you any questions?" Sue responds, very clearly typing out the words, "Not yet," followed by Sue visibly smiling and laughing. That's just one example that I've seen so far.

The facilitator was present, and could have been cuing that response -- maybe by looking at the right keys, or by tensing up, or by some other unconscious method.

If Sue can pass double-blind tests like the ones in the Frontline video, that's one thing, but her lack of independent communication makes me wonder. Someone who can type "not yet" and then laugh about it should be able to do so on her own, without a particular person present.

what do you propose, that it's all a RUSE?

I propose that it's more likely a case of unconscious influence than either a deliberate ruse or autistic communication. Sorry if that makes me the Biggest Asshole of the Day... but you know what? If this is so damned obvious, then it should be very, very easy to prove that it works. Trivially easy, with one or two very simple tests over the course of an afternoon. If that proof exists, I'll be happy to accept that FC works in this case.

Does it exist?
posted by vorfeed at 12:27 PM on March 29, 2010 [3 favorites]

So, not only does she have to live with crippling disabilities, the derisive scorn of the public, attendant emotional issues, and a whole nest of shit the video doesn't even get into, she ALSO has to prove herself to be an Actual Person to you and any other internet expert.

Amazing.

She's got her family, friends, faculty and classmates all fooled, but NOT YOU!
posted by chronkite at 12:39 PM on March 29, 2010

Coincidentally, I also have just found a new Biggest Asshole of the Day.
posted by scrowdid at 12:44 PM on March 29, 2010 [1 favorite]

Come now, gentlemen, let's not be rude to one another. I agree with chronkite that this seems very real, and I just don't see a way that the caretaker's "looking at the right keys, or tensing up, or some other unconscious method" could realistically affect Sue's apparent message when typing. Just the same, questioning it doesn't make someone an evil pompous fool. In the case I mentioned above, with the comatose man and his "facilitated communication," the most grievous part was that no one did question its veracity. The manipulation of the man's friends and family members was absolutely heartbreaking. I'd posit that it's rather compassionate to try to spare Sue's loved ones the same grief, and that starts by asking questions. I can't fault vorfeed's scientific approach for that.
posted by The Winsome Parker Lewis at 12:48 PM on March 29, 2010 [3 favorites]

chronkite, previous uses of facilitated communication also involved experts and loving (and frustrated) friends and family, but they fell apart.

This certainly doesn't look as "facilitated" as other facilitated communication methods I've seen demonstrated on various tv shows. But at the same time, the concern is an obvious one and blustering about who's the biggest asshole of the day in the way that you just makes you seem ignorant of the past attempts, no matter how many words you throw into all-caps.
posted by ROU_Xenophobe at 12:56 PM on March 29, 2010

chronkite,

Calm down, I don't think there's any call for that sort of language.

Personally I see no reason not to believe what I see, but no-one here except for you is claiming anything about her not being an "Actual Person". Obviously whenever a vulnerable person exposes themselves like this one has to be most careful not to let reasonable doubt shade into mockery or accusations of deceit but I don't think that anyone in this thread has done anything of the sort. The fact that we have to handle criticism sensitively does not mean that we simply have to take as cold, verified fact something that we see on camera, no matter how affecting the subject matter.
posted by atrazine at 1:02 PM on March 29, 2010

I rewatched it, never considering the FC to be an unconscious act of subterfuge by family and assistants. I honestly don't see it. The facilitator seems at each instant to be holding it as steadily as possible, as well Sue snaps the case shut when she finishes her thought, not before mid sentence nor does she try to continue on typing after a thought is complete into gibberish. As well she and the facilitators would also be fooling not only themselves, but also psychologists, diagnosticians and multiple professors, seems unlikely to me.
posted by ExitPursuedByBear at 1:09 PM on March 29, 2010

We really are through the looking glass... every word spoken by politicians, actors, company spokesmen and tv personalities has been written by someone other than the speaker, and we make them stars and heroes.

But a severely autistic girl finds a tool that proves she's not retarded and uses it to make a meaningful life for herself?

FRAUD!

BURN HER!

Because there's a chance that their assistant might be, you know, possibly, on a subconscious level, sending clues about which button to hit next.
posted by chronkite at 1:50 PM on March 29, 2010

Man, chronkite . . . you really need to step away from the keyboard for a second. Whatever validity your argument has is being completely overwhelmed by the combative tone of your posts. Nobody has said that this woman is not an "Actual Person." No one has insulted this woman. Some people have (IMO rightfully) brought up some of the inherent problems with assisted communication citing past examples that were not what they seemed to be.

We get it, you disagree. But disagree without calling people assholes and lay off of the heavy handed sarcasm. there's really no call for it here, everyone (except for you) has been pretty civil in this thread.

Also, all-caps are not your friend. They do not emphasize your point they just make you seem vehement and kinda take away from your argument.
posted by anansi at 1:58 PM on March 29, 2010 [5 favorites]

Facilitated communication always looks very real and convincing. It also has never yet passed a (very simple) blind test. I don't want in any way to cast scorn or derision on Sue Rubin, or imply that I have any idea what's going on in her head. I don't. Neither do you, though, unless and until her facilitated communication can pass a basic controlled test. Maybe she'll be the one to prove that it is possible -- we can certainly hope. But so far there is zero evidence that FC is anything but wish fulfillment on the part of a lot of really very well-meaning friends and loved ones.

I can understand if she or her family don't want to, or don't feel like they need to, prove anything to anyone. If they're happy, ok. But it would be a shame, if it's the real deal, not to at least try to prove that FC is not always imaginary.
posted by rusty at 2:01 PM on March 29, 2010 [4 favorites]

Facilitated Communication doesn't have to be real for autistic people to be real, full persons. If you're going to choose a hill to die on, make sure it's not a valley.
posted by Pope Guilty at 2:01 PM on March 29, 2010 [4 favorites]

So, not only does she have to live with crippling disabilities, the derisive scorn of the public, attendant emotional issues, and a whole nest of shit the video doesn't even get into, she ALSO has to prove herself to be an Actual Person to you and any other internet expert.

No, she's quite obviously an Actual Person. In fact, as far as I'm concerned, treating people like Actual People involves questioning their extraordinary claims. This is the first thing I'd want someone to do for me if I were Sue, not something I'm doing because I'm an asshole, an internet expert, or whatever.

Like I said before, if Sue has proved under controlled conditions that she can communicate something her facilitator couldn't have been aware of, I'll be more than willing to agree that FC worked in her case... but if she hasn't, then I have to wonder why. I don't know which is the case, and I'm hoping someone here does.
posted by vorfeed at 2:21 PM on March 29, 2010

From Rubin's homepage, emphasis mine:

Using FC, I graduated from Whittier High School in Whittier, California with honors, and am now a student at Whittier College typing independently.

I'm firmly in the 'FC is beyond dubious' camp, but thought it worth pointing out that Rubin now claims to communicate directly.
posted by a little headband I put around my throat at 2:51 PM on March 29, 2010

When I said "Actual Person" I meant "a person to be taken seriously and listened to", and not a two year old.

We are ALL people..even many animals such as dolphins, horses, cats, etc fall under the broadest definition of "people", but only those of us that communicate in the dominant format are considered intelligent.

Speaking and writing are valued and widely comprehended, sign language a little less so, pointing and grunting even less so. It's a hierarchy, and FC seems to be at the very bottom, from what I gather on the internet. Except among people and families like this, who consider it a miracle and have their lives transformed.

The main thing I saw in these videos was that without FC, a trusted friend, and constant reassurance and practice, Sue wouldn't even be in public on any level..she'd be watching water pour over a spoon for the tranquility it offers, and no where NEAR a classroom, horse track, or autism therapist.

The communication that's happening is on a much bigger scale and broader frequency than what's being typed on that little pad.
posted by chronkite at 3:27 PM on March 29, 2010

I'm firmly in the 'FC is beyond dubious' camp, but thought it worth pointing out that Rubin now claims to communicate directly.

Yes, I noticed that, too, but why aren't there videos of this independent activity, as it would be earth-shattering?
posted by Mental Wimp at 3:27 PM on March 29, 2010

Using FC, I graduated from Whittier High School in Whittier, California with honors, and am now a student at Whittier College typing independently.
I'm firmly in the 'FC is beyond dubious' camp, but thought it worth pointing out that Rubin now claims to communicate directly.

That site looks like it hasn't been updated since 2005, the year the documentary aired. I can't seem to find much of anything attributed to Sue after that year (there's a 2006 byline for a CBS News story here, but that's all I could find).

Given the end of the documentary (in which Sue loses her facilitator), I question whether that's simply coincidence.

The main thing I saw in these videos was that without FC, a trusted friend, and constant reassurance and practice, Sue wouldn't even be in public on any level..she'd be watching water pour over a spoon for the tranquility it offers, and no where NEAR a classroom, horse track, or autism therapist.

I agree -- I don't think anyone here questions whether long-term, one-on-one care can be good for autistic people. The question is whether FC is what it claims to be: a method which allows autistic people to communicate via keyboard. Helping Sue to enjoy the horse race, to sit still for class, etc. is a laudable goal and a great achievement... but if FC is not the form of communication it seems to be, then perhaps she could have made all of those strides with the therapist, but without the keyboard. And perhaps she could have been in an autistic program which might have helped her even more, rather than the History department at Whittier College.
posted by vorfeed at 4:04 PM on March 29, 2010

Given the end of the documentary (in which Sue loses her facilitator), I question whether that's simply coincidence.

Yeah, after Googling around, it struck me that Rubin doesn't seem to be active anymore, and she's only mentioned in recent years by... I'm treading carefully now... the parents/carers of non-verbal autistic people in the debate with 'high functioning' autistic people over whether we should be looking for a cure for autism.

chronkite: I see where you're coming from (not counting the cats and horses!). I've worked with developmentally disabled children, and, almost without exception, 'a trusted friend, and constant reassurance and practice' helped them to better communicate their wants and needs, sometimes far beyond their supposed capabilities. So you're probably right that Rubin's life has been improved by the attention and help she's received as a result of FC.

But FC (like all miracles) has never been shown to work, and has frequently been exposed as, to put it kindly, not working at all.

I hope I'm wrong, and that Rubin is now typing without needing FC or always was, but given the history of FC, I don't think the doubters in this thread deserve the condemnation you're handing out.
posted by a little headband I put around my throat at 4:33 PM on March 29, 2010

While investigating more on Sue Rubin and the F.C. I found a site, very con-FC, which assumes Sue is not writing. It reports Sue suffers from 2q37 gene deletion, defect. Well, I looked it up, and the effects of this gene describe much of Sue's appearance and behaviors, including autism. That seems to muddy the waters abit.

However FC is not entirely without merit, there have been cases of FC producing independent and free writing, which start with faciltated writing. One of the more stunning examples is Lucy Blackman, a published author.
posted by ExitPursuedByBear at 4:41 PM on March 29, 2010

One of the more stunning examples is Lucy Blackman, a published author.

Lucy Beckman is a published author in that she contributed to Autism and the Myth of the Person Alone, which also featured an essay by Sue Rubin. It was edited by Douglas Biklen, who co-produced the linked documentary about Sue Rubin. He's a big proponent of FC, and a controversial figure, dismissed by his peers in education as someone 'whose record constitutes an argument against rigorous science in research involving individuals with disabilities'.

Obviously those connections don't mean Rubin and Beckman didn't write their chapters in Biklen's book, but, well, it's not looking too good, is it?
posted by a little headband I put around my throat at 5:19 PM on March 29, 2010

It looks like I owe Blackman an apology, and not just for spelling her name wrong - she's apparently also published an autobiography.

Two questions:

How on earth do people using FC know how to read and write, or at least know the alphabet, from the moment they're given the chance to use FC to communicate?

Is it possible that FC could be, in some cases (Blackman? Chandima Rajapatirana?), a laborious method of teaching non-verbal people with poor motor skills how to read and write?

Sorry for the repeat posting - as I say, I've worked with developmentally disabled children/young adults, and have seen people's ability to communicate improve radically when they're given attention, as well as watching parents and carers desperately 'interpreting' facial expressions, gestures, etc. to match their own expectations and hopes. So, for all that FC is almost certainly bunk and makes me angry, the slightest possibility that it might be legit is disturbing, as it would mean I'd let some people down very badly (the very feelings that drive adoption of FC, presumably).
posted by a little headband I put around my throat at 7:12 PM on March 29, 2010

I first saw facilitated communication in AUTISM: THE MUSICAL - a terrific documentary that, I think, left the viewer to determine the value of the FC session shown. (I concluded that it was absolute bullshit and my heart broke for the boy's mother). It's hard to see what's up in this documentary video, but the wikipedia entry linked from the woman's site says that Facilitated communication (FC) is a process by which a facilitator supports the hand or arm of a communicatively impaired individual while using a keyboard or other devices with the aim of helping the individual to develop pointing skills and to communicate. So - if you're holding the hand or arm - maybe you're legitimately supporting the elbow or wrist of the person while they move on their own, maybe it's like an ouiji board that you *think* is moving on its own, maybe you're a charlatan, maybe maybe maybe, we can't know. But it's more than just holding up a keyboard, and the issue of spelling raised above is a major one.
posted by moxiedoll at 8:48 PM on March 29, 2010

moxiedoll: So - if you're holding the hand or arm - maybe you're legitimately supporting the elbow or wrist of the person while they move on their own, maybe it's like an ouiji board that you *think* is moving on its own, maybe you're a charlatan, maybe maybe maybe, we can't know.

It should be easy to test. If the person has communication, understands the concept of being questioned, has any short-term memory, and comprehends anything about the world at all, a simple test is possible. Send the communicator out of the room, show the individual being tested some piece of information (something as simple as a color or number would work, anything the communicator tells you they can recognize), and bring the communicator back in. Send the original researcher out of the room, bring in another, and have them ask the communicator if they can have the individual being tested describe what they saw. Run replicates to eliminate the possibility of random error.
posted by Mitrovarr at 10:12 PM on March 29, 2010

Send the communicator out of the room, show the individual being tested some piece of information (something as simple as a color or number would work, anything the communicator tells you they can recognize), and bring the communicator back in.

In the Frontline video I linked to earlier, they had an even simpler test -- the facilitator sat right next to the autistic person, as usual (thus ruling out confounding factors like "being unable to pay attention without the facilitator", etc). The experimenter showed the facilitator a manila folder with a picture in it, folded so that the autistic person couldn't see it. Then the experimenter turned and showed the folder to the autistic person, and as he did so he flipped down the photo so it showed something entirely different, unbeknownst to the facilitator. Again, he held the folder so the facilitator couldn't see the photo. Then a research assisstant would ask the autistic person to describe what they saw.

This may have been the research described here, which mentions the manila folder as well as your "ask the facilitator to leave" method.
posted by vorfeed at 11:03 PM on March 29, 2010 [1 favorite]

I think there's a fair amount of faking going on with facilitated communication; I think at its worst it can be out and out charlatanry. But Sue Rubin is the real deal. Her mom used to be on the board of the nonprofit organization I work for. And yeah, from what I undertand, Sue types independently now (I don't know the Rubins personally, but our executive director has been friends with them for years and years).
posted by infinitywaltz at 8:42 AM on March 30, 2010 [3 favorites]

Those are long videos, so I skipped to the "not yet" typing at the end of the second one (from 7:04 onwards). Is that the longest word we actually get to see her type? "Y E T "?

Interviews are often filmed with a single camera, and it's easy to forget that most of what we see has been stages - first they film the interview with the camera aimed at the subject, then they re-film the interviewer asking the questions. So I can expect a few things that don't look right, but there's one bit that looks especially odd.

When the camera shows her allegedly typing the word "not", you see her finger to the left and below the key. But the letters of the word "not" aren't in that area. And she reacts happily as the voice says "not", but that must have been a reaction to something else. So what's actually going on?
posted by Joe in Australia at 7:59 AM on March 31, 2010

april fool? a day early?
posted by infini at 8:26 AM on March 31, 2010