A 17 Year Old with Severe Autism and His Six Completed Coursera Courses
blog.coursera.org
blog.coursera.org
As you read them, just keep in mind that there is no agreed-upon definition of "autism" or "Asberger's Syndrome". (Nor does autism exist on a defined one-dimensional spectrum, contrary to popular belief.) Each individual is wildly different. So "severe autism" in one person might mean that person can't talk. In another it might mean they have seizures. In another it might mean they can hold a conversation but can't tie their shoes. The media tends to gloss over this major issue, and in so doing it wrongly connects many poorly-understood discrete neurological disorders.
The upshot is that even though it may be great that this particular individual benefits from Coursera, the vast majority of "autistic" individuals I have come across are not capable of processing anything that might be taught in a college-level course. Coursera cannot help them, although perhaps some more basic technologies might.
For those interested, my father has written about these general points here:
- Autism and the Media http://www.huffingtonpost.com/neil-s-greenspan/autism-and-th...
- Conceptualizing Autism: "Cloud" vs. "Spectrum" http://www.huffingtonpost.com/neil-s-greenspan/autism-concep...
- Major Obstacles for Adults with Autism http://www.huffingtonpost.com/neil-s-greenspan/understanding...
tl;dr If it helps one person great, the article never implies it's a magic pill.
You would also appear to have a rather narrow definition of "media." If a company's post on a public blog for reporters to pick up on isn't media (I think it is), then would that same post being relayed via Hacker News be?
Both of those seem a bit ridiculous to me, particularly given that it's very clearly a story about one kid with a particular set of autism-related symptoms, and no claim or suggestion that coursera is, in general, helpful for folks with autism.
I'm not sure where you're coming from with such an accusatory tone but it's not working.
This particular child does not seem to be able to talk. Completing high level humanities course work really is an accomplishment worth celebrating.
Incidentally, speaking of high functioning autism, I'f long found it ironic that one of the top experts alive today on emotion in animals is herself autistic. See http://templegrandin.com/ for more.
(And what, you ask, is the practical value of understanding emotion in animals? Well one thing that she did was improve a slaughterhouse to would not frighten the cows going into it, thereby lessening how much inefficiency they had from frightened animals trying to escape. The ironies mount...)
I've seen her speak in person at a state fair. She's a pretty good inspirational speaker, would recommend if you ever get a chance. She does better in person than her biographical movie would seem to imply. If she ever gets tired of livestock she probably could 2nd career as a motivational speaker. I'd summarize her state fair speech about her life experiences to something like success comes exclusively from grit, which isn't too far from the original post and/or my own observational experience. For whatever local definition of "greater good" and "success" applies.
(edited because I feel the need to rephrase: I saw a speech of hers in person, which (hopefully accurately) summarizes to its a universal fact of ALL humanity that success is the result of grit. Which I'd agree with. However the friction comes from no universal definition of what "greater good" and "success" means across individuals.)
She will never take part in the debate about whether an 'Aspie' gets to call themself 'ASD' or 'Autistic' or 'HFA', because she is not able to understand or speak about such topics; She will never be able to campaign against the 'neurotypicals' efforts to create a cure or prevent the condition from occurring. She will never be able to read how Jenny McCarthy cured her son of his seizure disorder or decide whether it constituted autism or speculate about thiomersal.
People like her are not able to speak up for themselves, and they've been quietly robbed of a word for their conditions. In some circumstances, this is extremely problematic; Seeking help from the state hinges on such words. The 24/7 caretakers that have been required since my family reached the breaking point has only been possible with a lawyer and a series of lucky breaks in state funding & local politics - with 2013's definition of 'Autism', the planets might not have aligned the same way.
Autism was never a terribly precise syndrome. Mental health is full of '6 out of 10 symptom' checklists; I like to visualize them as 'constellations' rather than clouds, because they exist on their own - we just draw the lines along things that seemed to be clustered. It is the particular looseness of the Autistic Spectrum that's allowed linguistic creep. I don't assert that early-childhood regression, severe cognitive disabilities, barely-lingual, no eye contact, compulsive behaviors, self-harm, stimming, problems with loud noises, and seemingly random inappropriate decisions like disrobing or running into traffic or poking a stranger or trying to enter an interesting-looking house are the canonical Autism. However, they constitute something, something almost completely different than many of the people I meet who claim to be autistic, and the language has progressively failed us in description.
It would be sad.
However, that Daniel's parents are unconsciously inventing his written voice and, therefore, inventing virtually everything we know about his cognition seems to be a huge assertion to make with very little evidence. The article says the parents would "hold his hand while he spells" (emphasis mine). I could see parental bias (a la ideomotor effect) playing a role in guiding the subject when the answer is one choice out of several discrete options, but it seems impossible for that kind of placebo effect to play out in spelling words, where the sequence of letters would have no meaning to the parents until a word or morpheme was already complete or almost complete, let alone sentences. Has research indicated that facilitated spelling can and, as you suggested, normally does just result in the parent talking? I really hope the answer is no...
While it is not impossible for any given instance of facilitated communication to be actual communication, it is irresponsible to believe so without some pretty solid verification given that even proponents of the technique admit that in 'many' cases the facilitator was doing the communication. I believe that the most recent APA stance was that facilitated communication should be actively avoided.
People doing this kind of facilitated communication, had previously written entire sentences, paragraphs, poems, and so on this way. And it was all, as far as the experiments show, the facilitator, not the patient, who was really writing it. Some of the facilitators had no idea; they really thought that it was the patient writing everything, and they were just helping support the patient's hand. A few of them renounced FC after this, realizing it was just them subconsciously writing for the patent, but some continued to persist in their belief that it really was the patient writing despite the strong evidence to the contrary.
Have you never had an experience where you attributed reasoning to a pet's actions? Sometimes we can tell what a pet wants, and so we can reason about what they are doing; sometimes we might be wrong about it. There are plenty of cases where you have a good guess based on other information, like the pet getting hungry at the appropriate time. If you tried doing "facilitated communication" with your pet, and really believed that it worked, you would probably wind up spelling out things like "I'm hungry" when it was hungry; and then take that as evidence that your pet really was writing that, not you.
In fact, this kind of reasoning is used all the time in research that shows that you can teach animals human language, or sign language, or the like. You get researchers who learn a lot about the animal; learn about its attitudes and ways of non-verbally expressing itself. Then they start reading things into the signs or sounds the animal makes, and present it as evidence that they've taught the animal language. But if you do any kind of experiment that takes that particular researcher out of the picture, or provides a reasonable level of blinding, all of that ability goes away, and you hear them talk about how "well, they can't perform under these kinds of stressful situations."
You might think "well, so what, it's at worst something harmless that makes the family feel better." But there have been cases where via facilitated communication, kids (or based on the above research, their facilitators), have accused their parents of sexual assault. Fathers have had to move out of their houses and fight long legal battles on the basis of an accusation that, most likely, was simply made up by prompting of the facilitator. Believing that facilitated communication works without strong evidence that it's the patient and not the facilitator in control can have some serious consequences.
But if you point this out, especially in relation to a feel-good FC story like this one about someone completing college level coursework through FC, you just sound mean and contrary. I would love to believe that advancing technology and therapeutic methods allow people who cannot learn via a conventional methods to have access to knowledge they never would have otherwise. But given the lack of strong evidence that FC really works, these feel-good stories sound more like people just trying to sell more snake-oil than an actual breakthrough.
Yes. Normally they have to be stable over 6 months. They also have to be affecting the person's life significantly.
It's very frustrating hearing people read DSM on the various personality disorders and saying "lol that's Bob" or "look, I have most of these", and misunderstanding the severity of the symptoms described.
'The history of the portrayal of disabled people is the history of oppressive and negative representation. This has mean that disabled people have been presented as socially flawed able bodied people, not as disabled people with their own identities'.
David Hevey, 25 March 1992
This is what I find so weird. I hear people talking about their autistic child or autistic nephew or something as if they are profoundly disabled. But I've worked with sysadmins and with programmers who had autism diagnoses. And sure, some of them were difficult to communicate with, but they were working with me, and usually fairly competent at their jobs, I mean competent enough that it was worth significant effort to figure out how to communicate with them.
That, and I work with a lot of people who are hard to communicate with; while only a few of them have told me that their psychiatrist has diagnosed them with this or that... (I mean, considering the stigmas involved, generally speaking, disclosing your mental health issues to all but those you are closest to is a bad idea.)
so my assumption was that if a few of the people I worked with /had/ told me, well there are bound to be others who just keep it under their hat.
But then, if I encounter an Autism advocate, they seem to think I'm very wrong in think there are a large number of socially disabled but otherwise functional folks with Autism, and that I'm doing autistic folks a disservice by thinking so.
>The upshot is that even though it may be great that this particular individual benefits from Coursera, the vast majority of "autistic" individuals I have come across are not capable of processing anything that might be taught in a college-level course. Coursera cannot help them, although perhaps some more basic technologies might.
I think there is a /lot/ of selection bias here, for both of us. I put a good bit of effort into putting myself in situations where you could reasonably argue that I'm the dumbest guy in the room, and am usually provably the worst programmer in the room, and I'm not involved in caring for the 'profoundly disabled' - so I am choosing what I see.
On the other hand, most Autism advocates spend time with those most profoundly disabled; they need the most help, after all. Someone who mostly has life under control, likely, would keep it between himself/herself and the shrink, so I would imagine that shapes how they see the world, too.
But yeah, I never understood why they used the same word for the guy next to me that can kick my ass at everything but talking, and the kid who can't talk at all.
Autism is similar. It may be an neurological trait that the individual compensates for or an utterly debilitating condition. It doesn't mean they are different conditions if the only difference is the severity of the symptoms.
That is very relative though.
My son was diagnosed with PDD-NOS almost three years ago, and for me the vast majority of "autistic" individuals are his mates which happens to be in the high functional side of the spectrum too. I am sure that they will not only take advance of Coursera courses but also they will excel at the college.
http://en.wikipedia.org/wiki/Facilitated_communication
If you look at the picture in the article, he isn't even looking while his father guides his hand.
You not only can see the father guiding his hand, but Daniel isn't even looking at the board. I would challenge anyone to respond to a question by poking at an iPad, without looking, while someone else holds their hand.
The problem is, is VERY hard to decipher what a autistic person is doing and why.
It's, sadly, nothing more than facilitated communication.
IMO, it is easily to get distracted while working in somewhat unfamiliar conditions. I can easily imagine that, if someone takes a photo of me coding in front of my laptop, I will end up looking weird and distracted because I would be nervous about camera.
I am pretty sure that if someone wanted to fake it(even unintentionally), he would pick more "realistic" photo.
2) Just saying it wasn't validated doesn't mean it can't (and doesn't) work. Of course there is a link to wikipedia entry, but there are mixed data, and far from the claim "It doesn't work, plain and simple" (to which you agreed).
30-40 years ago it was mainstream to deny intelligence in non-human animals. But now, there are evidence that animals are intelligent: crowns learning to use tools, dolphins passing mirror test, parrots learning to count objects(and doing a lot of ther cool stuff).
There are some positive data, like: "A study by Bernadi and Tuzzi finding that the communication of FC users displayed the characteristics of valid communication recorded that of its 50 subjects 13 had achieved “full and independent control of the method” while 37 “had reached a high level of independence”"
http://www.pbs.org/wgbh/pages/frontline/programs/transcripts...
I hope that this letterboard is now a computer keyboard instead...
I think online chat must be a fantastic way for autistic people to communicate, at least given what I have read in books about it. I once read about an autistic person who was unable to speak to people but he could write them, but this book was from the eighties (titled "If I could talk to you"). That really made me wonder if that person is posting on the internet today.
One of my kids had some pretty serious medical problems resulting in some speech delays. This is just barely before "all problems must be solved via a tablet" era. So the speech therapists were all into sign language and then pictograms and eventually he started talking when he got around to it. Other people are like "yeah my kid started talking just out of the blue one day" and I'm all feeling that's like throwing lego pieces in the air and they come down full assembled, although supposedly it happens. Anyway I'd be really suspicious of any first words other than "more" as in candy and treats and toys and stuff. Carb addiction sets in early I guess. Basic needs were discussed long before discussions of kissing up to mom and dad.
Watching kids learn language makes me wonder about the standard sci-fi trope of humans and space aliens learning language via math or sharing physics constants. Probably adult human vs adult space alien will learn each others language via sharing pr0n pixs and pixs of junk food. Actually that kinda resembles what I've seen on 4chan. That would make a very interesting sci fi story if the concept were expanded on. For better or worse I think Hacker News is probably not a primary choice location for space alien first contact, compared to say facebook, youtube comments, or 4chan. Presumably space aliens would have their own little weird green space alien 4chan and would come to the same conclusion, thus a realistic tolerance and shared understanding would result.
I suppose this will lead to the inevitable start up idea of creating a space alien attracting social network. Or just buy reddit rather than develop it as a startup.
It's pretty interesting to see what words people pick when their vocabulary is very limited (like, 5 or fewer words). When my son had severe speech delays, we focused on teaching him signs like "hungry", "more", "diaper", and "help".
I was actually quite grateful to have played a game called "Og" where players take on the role of cavemen, typically with vocabularies of that size. We learned, through experience, that words like "I" and "mom" are nowhere near as important as "food". I, too, would be suspicious of first words (for someone with severe delays) that weren't addressing specific momentary needs.
> "yeah my kid started talking just out of the blue one day"
Mine had some very sudden increases in his speech. There was about a month-long period where my list of all of his spoken vocabulary ballooned from about a dozen words to well over a hundred. I wouldn't say it was "out of the blue", but instead the result of quite a bit of intensive therapy, focused communication from all of the adults in his life, and his own growth.
<edit> Both of my kids had sudden rapid improvements in speech at some point, too. I can't remember, when, and I know it happened earlier with my daughter than my son, but I still remember the day my son was answering a question and started with "Actually, ..." and then later on, "Even so, ...". He was two. Close together siblings are fantastic teachers!
So that's one reason for one of the language-jumps.
But it is fascinating. My son has one phrase which he speaks with a local accent, but the rest of his language is different.
Unfortunately this it a form or magic some families of autistic children get tricked into believing and it is quite sad Coursera is perpetuating this awful lie.
https://www.coursera.org/about/jobs
(I'm part of the team there =) )
Autism is a spectrum... sadly the parents of children that have a harder time communicating want to claim those on the spectrum that can communicate aren't autistic or don't know what its like to be a lower functioning autistic. The higher functioning ones get upset at parents who claim they are not autistic.
Its bad seeing so much infighting in the Autism community. If people as passionate as those in the Autism community were to work together they could accomplish a lot. But because of the infighting trolls like Autism Speaks are the ones speaking for the Autistic Community while were all having this private war.