6 ms·

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 ag

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-the-media_b_560906.html http://www.huffingtonpost.com/neil-s-greenspan/autism-and-th... - Conceptualizing Autism: "Cloud" vs. "Spectrum" http://www.huffingtonpost.com/neil-s-greenspan/autism-conceptualizing-au_b_586546.html http://www.huffingtonpost.com/neil-s-greenspan/autism-concep... - Major Obstacles for Adults with Autism http://www.huffingtonpost.com/neil-s-greenspan/understanding-autism-in-a_b_527697.html http://www.huffingtonpost.com/neil-s-greenspan/understanding...

criley 13y ago
Why only Huffington Post publication? They're widely known for alt-medicine and anti-science, and anyone reading science/medicine should rightfully be wary of anything on HuffPo, which has often lent it's publicity and support to anti-scientific groups. Also, don't you mean it's more than a two dimensional spectrum, as one dimensionality would be a single point, not a line. And, even if you did mean two dimensional, I think you're being unfair to the DSM-IV/DSM-V which does not literally define Autism Spectrum Disorders as falling on a two dimensional spectrum, but just uses the word to figuratively explain the variety inherent in the diagnosis. They include multiple levels to the spectrum which alone make such a spectrum "3d" and thus more 'cloud-like' without ever having to resort to calling the APA and it's Diagnosis manual as wrong. Although, I bet calling the APA wrong garners more page views...
RK 13y 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.
wyck 13y 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.
- thinkcomp 13y 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?
  - TWAndrews 13y ago
    I can imagine it's frustrating, but are you suggesting that the father shouldn't have written it, or that coursera shouldn't have reposted it to their public blog? 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.
  - wyck 13y ago
    Using a blanket terms like media" often implies an agenda, in this case it's just a father's story. I'm not sure where you're coming from with such an accusatory tone but it's not working.
btilly 13y 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/ 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...)
- thinkcomp 13y 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.
  - VLM 13y ago
    "Her experience is not representative of anything." 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.)
mapt 13y 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.
- mapt 13y 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.
oliverhunt 13y 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
lsc 13y 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.
pmelendez 13y 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.

criley 13y ago

Why only Huffington Post publication? They're widely known for alt-medicine and anti-science, and anyone reading science/medicine should rightfully be wary of anything on HuffPo, which has often lent it's publicity and support to anti-scientific groups. Also, don't you mean it's more than a two dimensional spectrum, as one dimensionality would be a single point, not a line. And, even if you did mean two dimensional, I think you're being unfair to the DSM-IV/DSM-V which does not literally define Autism Spectrum Disorders as falling on a two dimensional spectrum, but just uses the word to figuratively explain the variety inherent in the diagnosis. They include multiple levels to the spectrum which alone make such a spectrum "3d" and thus more 'cloud-like' without ever having to resort to calling the APA and it's Diagnosis manual as wrong. Although, I bet calling the APA wrong garners more page views...

RK 13y 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.

wyck 13y 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.

thinkcomp 13y 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?
- TWAndrews 13y ago
  I can imagine it's frustrating, but are you suggesting that the father shouldn't have written it, or that coursera shouldn't have reposted it to their public blog? 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.
- wyck 13y ago
  Using a blanket terms like media" often implies an agenda, in this case it's just a father's story. I'm not sure where you're coming from with such an accusatory tone but it's not working.

btilly 13y 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/ 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...)

thinkcomp 13y 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.
- VLM 13y ago
  "Her experience is not representative of anything." 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.)

mapt 13y 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.

mapt 13y 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.

oliverhunt 13y 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

lsc 13y 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.

pmelendez 13y 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.