A 17 Year Old with Severe Autism and His Six Completed Coursera Courses

http://blog.coursera.org/post/51976868541/not-impossible-the-story-of-daniel-a-17-year-old-with

by alecco • 13 years ago

252 65 13 years ago

blog.coursera.org

aashaykumar92• 13 years ago

Heartwarming read. Glad to see that people with disabilities can truly benefit from online education.

roguecoder3• 13 years ago

As long as there is another person available full-time to caretake and facilitate?

apalmer2• 13 years ago

uhh thats still definitely a 'benefit' if true...

derleth• 13 years ago

In this case, the facilitator was almost certainly doing the work.

https://news.ycombinator.com/item?id=5810711

woofyman4• 13 years ago

Facilitated communication hasn't been scientifically validated.

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.

mattstocum3• 13 years ago

"Not scientifically validated," is being awfully generous. It doesn't work, plain and simple. The facilitator is the one responding in 100% of cases.

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.

woofyman4• 13 years ago

Yeah, I was being charitable.

mamcx• 13 years ago

Because a autistic person don't look directly to you don't mean is not looking at you. Is very common to them of see "away" and pay attention to thing in front or in a side.

The problem is, is VERY hard to decipher what a autistic person is doing and why.

apalmer2• 13 years ago

Didn't know this was facilitated communication, still seems there is at least some limited verbal communication involved.

mattstocum3• 13 years ago

"Even more limiting, he is dependent on an adult to bring him to the task, keep him working on it, and hold his hand while he spells."

It's, sadly, nothing more than facilitated communication.

jdp• 13 years ago

It is hard to judge whether or not this is a case of facilitated communication just by that photo, it could just be that the whole family was posed for the photo for the article.

eatitraw3• 13 years ago

1) The editor(s)/photographer(s) probably wanted a nice photo for this post, like whole family being working together to the same issue. The mother may seem un-involved if both the son and the father would focus on the screen. Or maybe for some other reason it was just the most sweet-looking picture out of the series.

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).

woofyman4• 13 years ago

I believe that facilitated communication is snake oil. People who profit promoting it are scamming vulnerable people.

michaelhoffman• 13 years ago

Given that "facilitated communication" has been shown time and again to be the results of the facilitator rather than the impaired individual, this story mainly underscores how little credibility one should give to completion of a Coursera course as a demonstration of learning.

ppod• 13 years ago

I guess there's a very simple test - get the 'facilitator' to leave the room, show or tell the autistic person a word, bring the facilitator back, and ask the person to spell the word. With the picture, and the lines about 'steadying his hand'... this just reads like a really dark Onion article.

Aardwolf• 13 years ago

"He suddenly learned to answer questions by picking the answers out, one letter at a time, on a letterboard."

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.

mattstocum3• 13 years ago

It is done with a computer, in this case it appears to be an iPad. The problem is you have a facilitator, "steadying" the hand of the person who is communicating. In reality, the facilitator is actually guiding the person's hand, most likely without being aware of it themselves. It's easy to see why parents believe this method works. If you had a non-communicative child, and were suddenly told, just by pointing at this board, your child can talk to you, and his first words are, "I love you dad," you'd want to believe that more than anything else.

VLM2• 13 years ago

"and his first words are"

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.

thinkcomp3• 13 years ago

As someone with an autistic sibling I find feel-good articles like these immensely frustrating to read.

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...

RK• 13 years ago

My take-away wasn't that MOOC's will "save" autistic people, but rather that MOOC's have the potential to offer a lot to people who struggle for various reasons in a typical classroom environment. This happens to be an extreme example.

wyck2• 13 years ago

This wasn't the "media", this post was written by the father of an autistic person about his experience with coursera. I did not read any blanket statements that you are referring too. The fact this is frustrating to you is odd, given this is about a positive and specific circumstance.

tl;dr If it helps one person great, the article never implies it's a magic pill.

thinkcomp3• 13 years ago

Until you have lived with someone with autism I don't think it's for you to judge what I find frustrating about the condition and its wider implications. All of these articles are always about specific and positive circumstances, but they never disclaim that and people interpret them broadly.

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?

btilly• 13 years ago

I agree with you if the stories are taken as "here is what you could have done" or "here is your prognosis". But autism is highly variable. And how it responds to treatment is also variable. Successes are worth looking at because they might be applicable in others.

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...)

thinkcomp3• 13 years ago

Temple Grandin's experience, while interesting, is another example of media hype concerning autism that misleads a great number of people into believing that all autistic people can or should aspire to use their disability in furtherance of some greater good. This is not so; if only they should be so lucky. Her experience is not representative of anything.

mapt3• 13 years ago

As a fellow sibling of a severely autistic individual, I concur on all points. The word, which connoted a depressingly debilitating constellation of symptoms in cognition, communication, and perception when my sister was diagnosed, has been redefined year by year inside and outside of the psychiatric community until it means very little, subject to self-diagnosis based on perceived social anxiety among high-performing, high-IQ individuals who are able to initiate conversations, appreciate comedy, lie convincingly, have relationships, and master smalltalk.

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.

mapt3• 13 years ago

I would add that facilitated communication is one of the most tragic things I can imagine - equally so for the family and the facilitator who realizes they've been speaking the whole time. The picture accompanying the story is a textbook FC pose - we can only hope that's not what's going on. One almost wants to leave a long-time FC believer alone - delusion may be better than the emotional footprint of a debunking. Autism itself is emotionally brutal enough; If I learned I'd been helping my sister communicate desires and express opinions and write poetry for years as some kind of sick puppet master, I'd kill myself.

DanBC2• 13 years ago

> Mental health is full of '6 out of 10 symptom' checklists;

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.

oliverhunt• 13 years ago

I believe that much of the incorrect representation of impaired individuals in the way you are talking about relies on a description of impairments as 'not normal' or as 'less than normal' rather than actually describing how a person is restricted by their impairment or disability (disability defined as social oppression due to impairment).

'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

lsc2• 13 years ago

>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.

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.

roguecoder3• 13 years ago

This happens for lots of syndromes, though. CP can describe someone with a slight limp, if that, or folks with little bodily control who need around-the-clock care and can't communicate verbally. Dyslexia covers everything from fully-compensating children who have difficulty spelling to people who can neither read nor write, regardless of interventions. MS may cause occasional tremors or be utterly debilitating.

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.

baby• 13 years ago

Asperger

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pmelendez• 13 years ago

>"the vast majority of "autistic" individuals I have come across ..."

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.

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shele• 13 years ago

Judging from the photo, that might be facilitated communication* and this raises the question, /who/ completed these 6 Coursera courses.

* http://en.wikipedia.org/wiki/Facilitated_communication

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jngiam• 13 years ago

Coursera's hiring designers and engineers (frontend, infrastructure, analytics, mobile)! Join us in making a difference.

https://www.coursera.org/about/jobs

(I'm part of the team there =) )

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tudorconstantin2• 13 years ago

What's you excuse? - I don't have one - I only successfully finished about 3 courses, while I got 2 finished but with below required percentage and started about 10.

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tsm• 13 years ago

That's awfully condescending and presumptuous, don't you think? I've taken zero Coursera courses (but did take the original AI course with Norvig and Thrun), but have been busy taking max credit loads at school, TAing, becoming the lead dev at a startup, and starting my own startup. I'm sure a ton of people here can say something similar. MOOCs are great--as highlighted by the article--and I intend to take more. But there are other worthy things to do too. "The good is the enemy of the best."

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lmartel• 13 years ago

We're all very proud of you, but to me the OP seems to be making a general statement about achieving goals and productivity rather than specifically calling you out for not using Coursera.

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tudorconstantin2• 13 years ago

I don't want to judge anyone but myself, but when a guy with severe autism is able to finish 6 courses and I am not, it doesn't quite matter that I am full time employed while trying to build 2 startups, being married, having a kid and getting involved into local community by being an active member of the second largest political party in romania

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kqr2• 13 years ago

Also recommend the Frontline documentary which debunks facilitated communication.

http://www.pbs.org/wgbh/pages/frontline/programs/transcripts...

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haberman• 13 years ago

Great read, thanks. The part that most astounds me is how the facilitators could be totally unaware that all of the thoughts were coming from their own heads. It just seems like it would tip you off to notice that everything the autistic person was "saying" was something you were thinking.

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roguecoder3• 13 years ago

This is why Ouija boards are so creepy; it's easier to attribute the behaviors to outside forces than parts of our own brain we aren't consciously aware of. It disrupts the illusion of a cohesive "self", which we kind of need.

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aaron695• 13 years ago

Looking briefly at this it seems this is classic facilitated communication.

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.

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thezach• 13 years ago

Disclaimer: I am on the Autism Spectrum... at most times higher functioning but I have my days where i can be obsessive or sensory issues and other things to the point of not really being functional.

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.

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touristtam• 13 years ago

There is an article with similar thematic in the lastest "new scientist": http://www.newscientist.com/article/mg21829194.300-rise-of-t...

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A 17 Year Old with Severe Autism and His Six Completed Coursera Courses

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