8 ms·

I Have Nonverbal Autism. Here’s What I Want You to Know

136 points by AndrewDucker 11y ago

hrnnnnnn 11y ago
That kid is a really good writer for a 12 year old. Very clear and to the point.
- drrob 11y ago
  Indeed, I wasn't writing that solidly until into my 20s.
  - masterminding 11y ago
    Writing also wasn't your only means of communication...
- b3lvedere 11y ago
  The source it came from (http://faithhopeloveautism.blogspot.nl/2015/04/world-autism-awareness-day-2015.html http://faithhopeloveautism.blogspot.nl/2015/04/world-autism-...) is even better.
- lambda 11y ago
  Note that this was most likely written by his facilitator, not by him. It was written via a technique called "Rapid Prompting Method", which appears to be a variant of facilitated communication, a method that has been debunked as simply being the facilitator guiding the child, either consciously or subconsciously, to type things that the facilitator is thinking, not that the child is thinking. See https://en.wikipedia.org/wiki/Facilitated_communication https://en.wikipedia.org/wiki/Facilitated_communication for more information. I also recommend the PBS Frontline documentary "Prisoners of Silence" (transcript: http://www.pbs.org/wgbh/pages/frontline/programs/transcripts/1202.html http://www.pbs.org/wgbh/pages/frontline/programs/transcripts..., video: https://www.youtube.com/watch?v=HXw8Ksvyt5Y https://www.youtube.com/watch?v=HXw8Ksvyt5Y), which does a good job both debunking it, and demonstrating why facilitated communication can be quite harmful; there was a rash of incidents in which facilitators imagined sexual abuse allegations from children, leading to substantial repercussions for innocent parents.
  - DanBC 11y ago
    And there is a comment in the source article that claims it was written using RPM, so we know the exploitative RPM. Method was used. http://faithhopeloveautism.blogspot.co.uk/2015/04/world-autism-awareness-day-2015.html http://faithhopeloveautism.blogspot.co.uk/2015/04/world-auti...
    - mapt 11y ago
      And another comment on the blog that they're not focused on getting RPM working without the mother aiding.
  - smhg 11y ago
    Thank you for the explanation. I didn't know about FC. This should have been made very clear at the beginning of the article.
    - lambda 11y ago
      A lot of people who believe in FC and it's variants believe that there's a big conspiracy to silence the voices of their children. They don't think it's relevant that there was a facilitator who was just "supporting his arm" or "providing contact" or something of the sort. So they are unlikely to do this; they want to promote a notion that the child is producing the text, not the facilitator.
  - ZeroGravitas 11y ago
    I didn't realise this kind of thing applied to people with enough motion control to hold a cup of coffee as seen in the photo. Surely they can type on an iPad themselves at that point, without the need for an interpreter or go-between?
    - Rhapso 11y ago
      it is actually not about motion control. It is a fundamental inability to communicate. I don't know much about this specific case, but it is quite possible he could accurately hit arbitrary buttons, but cannot map those actions to a meaning to be communicated.
- mapt 11y ago
  This is likely above the 95th percentile writing skills for neurotypical twelve-year-olds, and uses anachronistic language to boot. When's the last time you heard a twelve-year-olds using words like "I am weary", or" for causing so much hardship.", or idiomatic abstracts like "another way of being". If you took a neurotypical kid and duct-taped their mouth shut up to age 12, you would be robbing them of the vast majority of reinforcement learning on grammar and wording that we receive as children, and it would knock them down several standard deviations in skill level relative to their peers in constructing sentences, paragraphs, and essays. On top of all this is the blatant wish-fulfillment. Socialized kids, at least, have a some degree of ego, and don't often express sincere thanks for their parents, their disorders, that their "school values them", or describe their behavior as "Then I would have meltdowns.". These are forced reflections that just don't occur naturally. On top of all this is the core of autism: Deficits in the theory of mind. Normal kids start to master deception, pretending, prediction of behavior, and empathizing somewhere between 2 and 5, and get gradually better at it as they get older. Autistics have marked problems in these areas. What they don't do is clearly model their audience, model their audience's ignorance of their own mind, then tell their audience to walk a mile in their own shoes, and describe the novel aspects of their mind from the perspective of a neurotypical outsider. There are recursive layers of social intrigue in this paragraph that people with autism would have a great deal of trouble understanding, much less writing: "Let’s pretend you are like me. You can’t talk, but you have a well-functioning mind and can understand people. Imagine you answer everyone who says something to you, but only you can hear it. Others hear your voice saying things you don’t necessarily mean. They think that’s all you are capable of thinking. People see your repetitive flapping or tapping and they think it serves no purpose. They don’t understand that the minute you stop, the moment is flooded with lights that hum, loud sounds that echo, kids moving too fast for you to keep up with and people trying to engage with you. It is hard on me to put my stimming away, but I try."
  - mapt 11y ago
    Take this passage from the blog and consider the tone and language, and ask yourself whether it could come from a twelve year old, much less an autistic twelve year old who'd only been communicating for three years, and presumably had never done things like read novels for fun (which I consider central to my own language skills relative to my peers): "I love to flap my hands. I flap to feel my body in space. No one goes through the trouble I have to feel my body well. Dare to feel each moment floating weightless in space. I am light and my movement is erratic without gravity making my movement steady. Each day I go crazy not knowing how my body will act. Most people have portly muscle mass to feel their own weight. I do not. I often feel like a bird about to take flight and it makes me flap. I love the sensation of my hands flapping. My hands flap when I am happy. They flap when I am momentarily stressed. They also flap to music. Flapping is important to me. I flap like a bird to feel free from my body. My body is naughty. It acts on impulse too much. No one can discipline it. It has a mind of its own. It makes messes. It acts like a jerk. My body feels tension from stress. Many times I can't feel my body. I am unable to do many things people do without thinking. Lastly, my weary lament for my Autistic friends who can’t communicate kills my soul. Living with autism is hard. I sometimes would like to try living without it but I can't. Living peacefully requires me to accept myself, autism included. I mean to make the most of what I have been given. I have been given a strong mind. I have a mission from God. I am trying to educate the world about autism. No meaning comes from being negative about autism. My slavery to negative stereotypes is over. I am free peacefully pursuing my dreams. Moments are still very challenging but I know I can persevere and someday peacefully make a beautiful life for myself." "My weary lament" "I have a mission from God. I am trying to educate the world about autism." "My slavery to negative stereotypes is over." I have trouble understanding how anyone could convince themselves this was legitimately a child communicating. It reads a bit like someone trying to make poetic reflections from the point of view of their dog, imagining what it must be thinking and inserting their own florid prose for laughs. If this woman really believes she's speaking with her son, rather than speaking for her son, that's heartbreaking. It reads more like a cruel satire of people who've found themselves in this situation, but to what end I could not guess. I would have been happy enough having my sister be able to explain that she was screaming because she heard an irritating noise, or tell us what she was getting out of tearing her clothes off, or say she was feeling sad the cat died, or ask us for basic things like not to have to go to the dentist. If we found a way to communicate with her using a vocabulary of ~500 words with simple grammar rather than 5-50 nouns based on immediate wants("cookie", "bathroom", "cheese", "tickle"), all of our lives would have been improved immeasurably... but I wouldn't expect her to start spouting Shakespeare references or Bible verse, and seeing that would cast immediate doubt on whatever method was being used.
deleted 11y ago
[deleted]
ppod 11y ago
Without video of the typing it is difficult to believe these assisted communication methods. It seems harsh but in the long run it isn't doing the child any good. This RPM thing involves a lot of fees, and if it isn't the real deal then it's horribly exploitative. Recent paper: http://www.tandfonline.com/doi/pdf/10.1080/17489539.2014.955260 http://www.tandfonline.com/doi/pdf/10.1080/17489539.2014.955...
- swombat 11y ago
  Your comment is not very clear. Are you saying the article can't be trusted because the method used to collect the contents of it is not representative of what the author is thinking? Or is influenced in some way? If so, wouldn't it be fairly obvious, e.g. the article would seem like gobbledygook? Please elaborate! :-) Edit: This seems adequately explained by another comment: https://news.ycombinator.com/item?id=9563887 https://news.ycombinator.com/item?id=9563887
AaronFriel 11y ago
We need to be very careful with this. And I mean we, the hacker community, we, society at large, and we, people who genuinely want to reach those with communication disadvantages. I'll start with why: this may not be Philip writing to us. I would like to believe it is, and those of us who may be on the autistic spectrum will not find it difficult to believe that this writing is of the ability they had when they were his age. That confirmation bias is but one of a number of cognitive biases that impel us to find Philip in these words. We are, of course, social creatures, and generally when we read heartfelt things like this we will set aside our critical nature. When presented with new and plausible information in the absence of anything that might indicate contrarily, we err to assume that it is true. But it likely is not. This blog highlights the "Rapid Prompting Method". This method is not strongly supported in blind tests. There is little empirical evidence that it allows persons with nonverbal autism to communicate, and in fact, decades of failed trials that suggest that this and other methods of facilitated communication do not work. It tugs at the heart strings, and it pains me to say this, but it is sadly almost certainly not Philip expressing these thoughts. What is rapid prompting? It is a process of rapidly presenting someone with options until they have produced sensible text. In practice, it looks like someone guiding a person who is stimming as a human Ouija board[1]. The practitioner silently omits incorrect options, just as superstitious teens neglect digrams that don't make sense when they are found with a Ouija board. This may be more than that, I would very much hope so. But the American Psychological Association's position on all forms of facilitated communication is firm: they are fraudulent[2]. Comparing rapid prompting to facilitated communication has already been done, as has been written about in NIH-supported journals[3]. These and other methods are woo, as the skeptical community describes it: not science. This woo is perpetrated by unwitting charlatans[4]. That harsh language is necessary, because we are doing something, I think, much worse than merely mistakenly giving a voice to persons with nonverbal autism. Instead, there are loving, adoring parents and "rapid prompting" experts who are unwittingly casting their voice as another's. Instead of undoing the silence of autism, they are turning people into dummies with a textual form of ventriloquism. What the hacker community should take from this is this: the desire to help those persons who have nonverbal autism is going to be very strong, but you can do great harm by making something that doesn't work. But if you're hacking something together, if you think you have a way to help, be cautious. Don't give in to the desire to "disrupt" this space. Instead, work with the psychological community, work with those who study neurological development. Don't just make something parents and loved ones want, make something that works. What society should take from this is that when people have their ability to communicate taken from them, it is very easy to put another's voice in their place and have everyone be none the wiser. It is very sad, but that is what happens to many of those "assisted" with facilitated communication. And as always, be skeptical of cures and success stories. It's easy to be swept away by what we want to be true. And finally, there are people who want to help those with communication disadvantages of all kinds. For those people working on this right now: Take that desire to make something that works, and rigorously apply the skepticism the public should have - but doesn't - to what you're doing. That is vital, it is key, it is the most important thing you can do. Don't allow wishful thinking to turn a child with autism into a puppet. [1] https://www.youtube.com/watch?v=xp3G8yM2vTg https://www.youtube.com/watch?v=xp3G8yM2vTg - One of many, many similar videos you can find. [2] http://www.apa.org/research/action/facilitated.aspx http://www.apa.org/research/action/facilitated.aspx [3] http://www.ncbi.nlm.nih.gov/pubmed/24102487 http://www.ncbi.nlm.nih.gov/pubmed/24102487 [4] http://www.science20.com/countering_tackling_woo/blog/why_rapid_prompting_method_still_doesn%E2%80%99t_pass_evidencebased_test-68146 http://www.science20.com/countering_tackling_woo/blog/why_ra...
wersplectior 11y ago
>'Let’s pretend you are like me. You can’t talk, but you have a well-functioning mind' I thought that one of the few genuine insights made about autism is that so-called autistic people have difficultly reading intentions (their own, or other people's) or even appreciating what minds and intentions are. Which is why they appear selfish, and why they're unqualified to make such statements. Also sceptical that coercing people to behave in socially acceptable ways is necessary or desirable. People who are basically happy and left to develop autonomously will tend to converge with social expectations as required. Maybe the spontaneous cures of autism are examples of that: happy children, perhaps shielded from bullying, whose parents supported them enough for this lengthy process to occur. Whereas trying to train people like dolphins risks making them miserable and thwarting that development.
- dghf 11y ago
  > I thought that one of the few genuine insights made about autism is that so-called autistic people have difficultly reading intentions (their own, or other people's) or even appreciating what minds and intentions are. Which is why they appear selfish, and why they're unqualified to make such statements. I don't think this is wholly accurate. My understanding was that people with autism commonly have deficient cognitive empathy (they have difficulty discerning others emotions) but not affective or emotional empathy (they get upset if they hear about others suffering). With sociopaths, it's meant to be the other way round: normal (or better than normal) cognitive empathy, but a lack of affective empathy -- hence their purported skills in manipulation.
  - wersplectior 11y ago
    My guess is that if there's no sense of self or other then there's no getting upset about others: there's just upset or 'upsetness' (which others may misinterpret as normal empathy).
- emodendroket 11y ago
  > Also sceptical that coercing people to behave in socially acceptable ways is necessary or desirable. Well that is the only way they could possibly live independently.
nsxwolf 11y ago
Well this took a dark turn. I never would have known about this RPM thing if I hadn't read these comments.
autism_parent 11y ago
I am an autism parent, who was similarly skeptical of prompting as many comments expressed here. My son, who appears completely uncoordinated with random repetitive behaviors, would fit the typical pattern of many of these kids. Even now, if we take him to a grocery shop, his conspicuous behaviors would cause people to stare at him. Yet, here is an experimentally testable concrete thing he can do: read a complex English passage and answer a series of fairly non-trivial multiple choice questions - for example "What is the tone of this paragraph? a) Irony b) Sarcasm c) Sorrow d) Happiness" type of questions which you cannot simply answer by trivial pattern matching. No prompting would be necessary and this test has been performed without parents being nearby, on totally new material. In fact, he takes these tests often, partly because we could tell he gets some thrill from getting everything right and that test-taking seems one of the rare times he seems completely focused. Originally, he was very prompt dependent (as many people mention here), so even I was somewhat skeptical about his real skills, but now I have no doubt. The reason I mention all this is that no casual observer, not even one who spends hours together with him, would conclude he can do those things. He has no motivation to connect or demonstrate his skills; yet, he now can demonstrate he can do these things independently. These kids are very complicated, so don't be too quick to dismiss them.
- fecak 11y ago
  Even now, if we take him to a grocery shop, his conspicuous behaviors would cause people to stare at him. I sincerely hope you still take him to the grocery shop. My daughter stims, makes loud noises, has OCD behaviors, may hit her head, etc. and I make a point of taking her to the stores several times a week. While it's good for her to practice being in public, I also want the public to see her and that there are others like her. As people with autism being in public becomes less of a novelty, other children and adults will eventually learn how not to stare, or in some situations how to help.
  - autism_parent 11y ago
    Yes, we do take him out, for the same reasons you mentioned. By now, we have lost any sense of shame or suffering about his behaviors. That was the thing we had to master - our own emotional suffering seeing him stared at.
fecak 11y ago
Having a rather severe non-verbal (some single words or rote phrase) 11 year old with autism, our biggest mystery is how much she does or doesn't understand about us or about her own condition. Articles like this (again, hopefully written by the subject) help give some potential insight. Because she essentially has no voice, it's almost natural to talk about her as if she isn't there. As she's grown we've been better about it, but because she doesn't express emotion it's near impossible to imagine what she might be thinking or feeling. I have several dreams a year where she speaks. I'd expect other parents do as well. The strangest thing for me is to have a child that has never asked us a single question. We see other families with 3 year olds that continuously ask "Why?" to everything you say. When you hear other parents complaining that their kids won't stop asking questions, I try not to remind them of the alternative.
- autism_parent 11y ago
  Please don't give up. My son is 16. He still shows fairly severe symptoms of autism. In all these years, I have longed to have one conversation with him, but that has never happened. However, to my surprise, he is also doing well academically through home schooling. He started out with a lot of prompting but now he can demonstrate his independent skill and mastery on fairly complex tasks - for example multiple choice tests in high school Algebra or English. By now, we know he is highly intelligent, but he has so many repetitive and OCD behaviors it is hard for him to function in the real world. He is learning to program and he shows some aptitude for it - he seems to be somewhat good (not yet surprisingly good) at finding bugs in short pieces of code. Our hope is that as he grows older, he will gain control of himself enough to be able to function in some assistive setting.
  - fecak 11y ago
    Thanks for sharing. Giving up isn't an option. We've fully accepted the possibility that we may be supporting her for our lifetime, with the hope we can get her to the point of at least some level of personal independence. I've read several articles related to autism and software testing. We aren't nearly at that level yet, but your son could be a candidate for those programs. Good luck to you as well.
corysama 11y ago
Not the same, but related: a month ago there was a Reddit BestOf'd comment from a self-proclaimed autistic describing his early life and current situation. I found it fascinating. http://np.reddit.com/r/science/comments/33czht/study_of_95000_children_finds_no_link_between_mmr/cqjwxkm http://np.reddit.com/r/science/comments/33czht/study_of_9500...
memossy 11y ago
The book "The Reason I Jump" is another excellent take, translated by the author of Cloud Atlas. He wrote this via independent typing (not RPM) when he was 13: http://www.amazon.co.uk/The-Reason-Jump-silence-autism/dp/1444776754 http://www.amazon.co.uk/The-Reason-Jump-silence-autism/dp/14... It looks as if the ABA provision was sub-standard (RPM debate aside) as modern ABA in the Verbal Behaviour mold should be adaptive and rely less on the intensive table sessions (which are still a part unfortunately). Done correctly it can provide the tools for communication, although not everyone will be able to speak with words. One thing that is interesting is that many of the principals of ABA are used in our mobile apps today, I certainly learnt a lot when reviewing the research and formulating my son's programme and vice versa implementing the ideas and concepts to the mobile sphere..

136 points by AndrewDucker 11y ago

hrnnnnnn 11y ago

That kid is a really good writer for a 12 year old. Very clear and to the point.

drrob 11y ago
Indeed, I wasn't writing that solidly until into my 20s.
- masterminding 11y ago
  Writing also wasn't your only means of communication...
b3lvedere 11y ago
The source it came from (http://faithhopeloveautism.blogspot.nl/2015/04/world-autism-awareness-day-2015.html http://faithhopeloveautism.blogspot.nl/2015/04/world-autism-...) is even better.
lambda 11y ago
Note that this was most likely written by his facilitator, not by him. It was written via a technique called "Rapid Prompting Method", which appears to be a variant of facilitated communication, a method that has been debunked as simply being the facilitator guiding the child, either consciously or subconsciously, to type things that the facilitator is thinking, not that the child is thinking. See https://en.wikipedia.org/wiki/Facilitated_communication https://en.wikipedia.org/wiki/Facilitated_communication for more information. I also recommend the PBS Frontline documentary "Prisoners of Silence" (transcript: http://www.pbs.org/wgbh/pages/frontline/programs/transcripts/1202.html http://www.pbs.org/wgbh/pages/frontline/programs/transcripts..., video: https://www.youtube.com/watch?v=HXw8Ksvyt5Y https://www.youtube.com/watch?v=HXw8Ksvyt5Y), which does a good job both debunking it, and demonstrating why facilitated communication can be quite harmful; there was a rash of incidents in which facilitators imagined sexual abuse allegations from children, leading to substantial repercussions for innocent parents.
- DanBC 11y ago
  And there is a comment in the source article that claims it was written using RPM, so we know the exploitative RPM. Method was used. http://faithhopeloveautism.blogspot.co.uk/2015/04/world-autism-awareness-day-2015.html http://faithhopeloveautism.blogspot.co.uk/2015/04/world-auti...
  - mapt 11y ago
    And another comment on the blog that they're not focused on getting RPM working without the mother aiding.
- smhg 11y ago
  Thank you for the explanation. I didn't know about FC. This should have been made very clear at the beginning of the article.
  - lambda 11y ago
    A lot of people who believe in FC and it's variants believe that there's a big conspiracy to silence the voices of their children. They don't think it's relevant that there was a facilitator who was just "supporting his arm" or "providing contact" or something of the sort. So they are unlikely to do this; they want to promote a notion that the child is producing the text, not the facilitator.
- ZeroGravitas 11y ago
  I didn't realise this kind of thing applied to people with enough motion control to hold a cup of coffee as seen in the photo. Surely they can type on an iPad themselves at that point, without the need for an interpreter or go-between?
  - Rhapso 11y ago
    it is actually not about motion control. It is a fundamental inability to communicate. I don't know much about this specific case, but it is quite possible he could accurately hit arbitrary buttons, but cannot map those actions to a meaning to be communicated.
mapt 11y ago
This is likely above the 95th percentile writing skills for neurotypical twelve-year-olds, and uses anachronistic language to boot. When's the last time you heard a twelve-year-olds using words like "I am weary", or" for causing so much hardship.", or idiomatic abstracts like "another way of being". If you took a neurotypical kid and duct-taped their mouth shut up to age 12, you would be robbing them of the vast majority of reinforcement learning on grammar and wording that we receive as children, and it would knock them down several standard deviations in skill level relative to their peers in constructing sentences, paragraphs, and essays. On top of all this is the blatant wish-fulfillment. Socialized kids, at least, have a some degree of ego, and don't often express sincere thanks for their parents, their disorders, that their "school values them", or describe their behavior as "Then I would have meltdowns.". These are forced reflections that just don't occur naturally. On top of all this is the core of autism: Deficits in the theory of mind. Normal kids start to master deception, pretending, prediction of behavior, and empathizing somewhere between 2 and 5, and get gradually better at it as they get older. Autistics have marked problems in these areas. What they don't do is clearly model their audience, model their audience's ignorance of their own mind, then tell their audience to walk a mile in their own shoes, and describe the novel aspects of their mind from the perspective of a neurotypical outsider. There are recursive layers of social intrigue in this paragraph that people with autism would have a great deal of trouble understanding, much less writing: "Let’s pretend you are like me. You can’t talk, but you have a well-functioning mind and can understand people. Imagine you answer everyone who says something to you, but only you can hear it. Others hear your voice saying things you don’t necessarily mean. They think that’s all you are capable of thinking. People see your repetitive flapping or tapping and they think it serves no purpose. They don’t understand that the minute you stop, the moment is flooded with lights that hum, loud sounds that echo, kids moving too fast for you to keep up with and people trying to engage with you. It is hard on me to put my stimming away, but I try."
- mapt 11y ago
  Take this passage from the blog and consider the tone and language, and ask yourself whether it could come from a twelve year old, much less an autistic twelve year old who'd only been communicating for three years, and presumably had never done things like read novels for fun (which I consider central to my own language skills relative to my peers): "I love to flap my hands. I flap to feel my body in space. No one goes through the trouble I have to feel my body well. Dare to feel each moment floating weightless in space. I am light and my movement is erratic without gravity making my movement steady. Each day I go crazy not knowing how my body will act. Most people have portly muscle mass to feel their own weight. I do not. I often feel like a bird about to take flight and it makes me flap. I love the sensation of my hands flapping. My hands flap when I am happy. They flap when I am momentarily stressed. They also flap to music. Flapping is important to me. I flap like a bird to feel free from my body. My body is naughty. It acts on impulse too much. No one can discipline it. It has a mind of its own. It makes messes. It acts like a jerk. My body feels tension from stress. Many times I can't feel my body. I am unable to do many things people do without thinking. Lastly, my weary lament for my Autistic friends who can’t communicate kills my soul. Living with autism is hard. I sometimes would like to try living without it but I can't. Living peacefully requires me to accept myself, autism included. I mean to make the most of what I have been given. I have been given a strong mind. I have a mission from God. I am trying to educate the world about autism. No meaning comes from being negative about autism. My slavery to negative stereotypes is over. I am free peacefully pursuing my dreams. Moments are still very challenging but I know I can persevere and someday peacefully make a beautiful life for myself." "My weary lament" "I have a mission from God. I am trying to educate the world about autism." "My slavery to negative stereotypes is over." I have trouble understanding how anyone could convince themselves this was legitimately a child communicating. It reads a bit like someone trying to make poetic reflections from the point of view of their dog, imagining what it must be thinking and inserting their own florid prose for laughs. If this woman really believes she's speaking with her son, rather than speaking for her son, that's heartbreaking. It reads more like a cruel satire of people who've found themselves in this situation, but to what end I could not guess. I would have been happy enough having my sister be able to explain that she was screaming because she heard an irritating noise, or tell us what she was getting out of tearing her clothes off, or say she was feeling sad the cat died, or ask us for basic things like not to have to go to the dentist. If we found a way to communicate with her using a vocabulary of ~500 words with simple grammar rather than 5-50 nouns based on immediate wants("cookie", "bathroom", "cheese", "tickle"), all of our lives would have been improved immeasurably... but I wouldn't expect her to start spouting Shakespeare references or Bible verse, and seeing that would cast immediate doubt on whatever method was being used.

deleted 11y ago

[deleted]

ppod 11y ago

Without video of the typing it is difficult to believe these assisted communication methods. It seems harsh but in the long run it isn't doing the child any good. This RPM thing involves a lot of fees, and if it isn't the real deal then it's horribly exploitative. Recent paper: http://www.tandfonline.com/doi/pdf/10.1080/17489539.2014.955260 http://www.tandfonline.com/doi/pdf/10.1080/17489539.2014.955...

swombat 11y ago
Your comment is not very clear. Are you saying the article can't be trusted because the method used to collect the contents of it is not representative of what the author is thinking? Or is influenced in some way? If so, wouldn't it be fairly obvious, e.g. the article would seem like gobbledygook? Please elaborate! :-) Edit: This seems adequately explained by another comment: https://news.ycombinator.com/item?id=9563887 https://news.ycombinator.com/item?id=9563887

AaronFriel 11y ago

We need to be very careful with this. And I mean we, the hacker community, we, society at large, and we, people who genuinely want to reach those with communication disadvantages. I'll start with why: this may not be Philip writing to us. I would like to believe it is, and those of us who may be on the autistic spectrum will not find it difficult to believe that this writing is of the ability they had when they were his age. That confirmation bias is but one of a number of cognitive biases that impel us to find Philip in these words. We are, of course, social creatures, and generally when we read heartfelt things like this we will set aside our critical nature. When presented with new and plausible information in the absence of anything that might indicate contrarily, we err to assume that it is true. But it likely is not. This blog highlights the "Rapid Prompting Method". This method is not strongly supported in blind tests. There is little empirical evidence that it allows persons with nonverbal autism to communicate, and in fact, decades of failed trials that suggest that this and other methods of facilitated communication do not work. It tugs at the heart strings, and it pains me to say this, but it is sadly almost certainly not Philip expressing these thoughts. What is rapid prompting? It is a process of rapidly presenting someone with options until they have produced sensible text. In practice, it looks like someone guiding a person who is stimming as a human Ouija board[1]. The practitioner silently omits incorrect options, just as superstitious teens neglect digrams that don't make sense when they are found with a Ouija board. This may be more than that, I would very much hope so. But the American Psychological Association's position on all forms of facilitated communication is firm: they are fraudulent[2]. Comparing rapid prompting to facilitated communication has already been done, as has been written about in NIH-supported journals[3]. These and other methods are woo, as the skeptical community describes it: not science. This woo is perpetrated by unwitting charlatans[4]. That harsh language is necessary, because we are doing something, I think, much worse than merely mistakenly giving a voice to persons with nonverbal autism. Instead, there are loving, adoring parents and "rapid prompting" experts who are unwittingly casting their voice as another's. Instead of undoing the silence of autism, they are turning people into dummies with a textual form of ventriloquism. What the hacker community should take from this is this: the desire to help those persons who have nonverbal autism is going to be very strong, but you can do great harm by making something that doesn't work. But if you're hacking something together, if you think you have a way to help, be cautious. Don't give in to the desire to "disrupt" this space. Instead, work with the psychological community, work with those who study neurological development. Don't just make something parents and loved ones want, make something that works. What society should take from this is that when people have their ability to communicate taken from them, it is very easy to put another's voice in their place and have everyone be none the wiser. It is very sad, but that is what happens to many of those "assisted" with facilitated communication. And as always, be skeptical of cures and success stories. It's easy to be swept away by what we want to be true. And finally, there are people who want to help those with communication disadvantages of all kinds. For those people working on this right now: Take that desire to make something that works, and rigorously apply the skepticism the public should have - but doesn't - to what you're doing. That is vital, it is key, it is the most important thing you can do. Don't allow wishful thinking to turn a child with autism into a puppet. [1] https://www.youtube.com/watch?v=xp3G8yM2vTg https://www.youtube.com/watch?v=xp3G8yM2vTg - One of many, many similar videos you can find. [2] http://www.apa.org/research/action/facilitated.aspx http://www.apa.org/research/action/facilitated.aspx [3] http://www.ncbi.nlm.nih.gov/pubmed/24102487 http://www.ncbi.nlm.nih.gov/pubmed/24102487 [4] http://www.science20.com/countering_tackling_woo/blog/why_rapid_prompting_method_still_doesn%E2%80%99t_pass_evidencebased_test-68146 http://www.science20.com/countering_tackling_woo/blog/why_ra...

wersplectior 11y ago

>'Let’s pretend you are like me. You can’t talk, but you have a well-functioning mind' I thought that one of the few genuine insights made about autism is that so-called autistic people have difficultly reading intentions (their own, or other people's) or even appreciating what minds and intentions are. Which is why they appear selfish, and why they're unqualified to make such statements. Also sceptical that coercing people to behave in socially acceptable ways is necessary or desirable. People who are basically happy and left to develop autonomously will tend to converge with social expectations as required. Maybe the spontaneous cures of autism are examples of that: happy children, perhaps shielded from bullying, whose parents supported them enough for this lengthy process to occur. Whereas trying to train people like dolphins risks making them miserable and thwarting that development.

dghf 11y ago
> I thought that one of the few genuine insights made about autism is that so-called autistic people have difficultly reading intentions (their own, or other people's) or even appreciating what minds and intentions are. Which is why they appear selfish, and why they're unqualified to make such statements. I don't think this is wholly accurate. My understanding was that people with autism commonly have deficient cognitive empathy (they have difficulty discerning others emotions) but not affective or emotional empathy (they get upset if they hear about others suffering). With sociopaths, it's meant to be the other way round: normal (or better than normal) cognitive empathy, but a lack of affective empathy -- hence their purported skills in manipulation.
- wersplectior 11y ago
  My guess is that if there's no sense of self or other then there's no getting upset about others: there's just upset or 'upsetness' (which others may misinterpret as normal empathy).
emodendroket 11y ago
> Also sceptical that coercing people to behave in socially acceptable ways is necessary or desirable. Well that is the only way they could possibly live independently.

nsxwolf 11y ago

Well this took a dark turn. I never would have known about this RPM thing if I hadn't read these comments.

autism_parent 11y ago

I am an autism parent, who was similarly skeptical of prompting as many comments expressed here. My son, who appears completely uncoordinated with random repetitive behaviors, would fit the typical pattern of many of these kids. Even now, if we take him to a grocery shop, his conspicuous behaviors would cause people to stare at him. Yet, here is an experimentally testable concrete thing he can do: read a complex English passage and answer a series of fairly non-trivial multiple choice questions - for example "What is the tone of this paragraph? a) Irony b) Sarcasm c) Sorrow d) Happiness" type of questions which you cannot simply answer by trivial pattern matching. No prompting would be necessary and this test has been performed without parents being nearby, on totally new material. In fact, he takes these tests often, partly because we could tell he gets some thrill from getting everything right and that test-taking seems one of the rare times he seems completely focused. Originally, he was very prompt dependent (as many people mention here), so even I was somewhat skeptical about his real skills, but now I have no doubt. The reason I mention all this is that no casual observer, not even one who spends hours together with him, would conclude he can do those things. He has no motivation to connect or demonstrate his skills; yet, he now can demonstrate he can do these things independently. These kids are very complicated, so don't be too quick to dismiss them.

fecak 11y ago
Even now, if we take him to a grocery shop, his conspicuous behaviors would cause people to stare at him. I sincerely hope you still take him to the grocery shop. My daughter stims, makes loud noises, has OCD behaviors, may hit her head, etc. and I make a point of taking her to the stores several times a week. While it's good for her to practice being in public, I also want the public to see her and that there are others like her. As people with autism being in public becomes less of a novelty, other children and adults will eventually learn how not to stare, or in some situations how to help.
- autism_parent 11y ago
  Yes, we do take him out, for the same reasons you mentioned. By now, we have lost any sense of shame or suffering about his behaviors. That was the thing we had to master - our own emotional suffering seeing him stared at.

fecak 11y ago

Having a rather severe non-verbal (some single words or rote phrase) 11 year old with autism, our biggest mystery is how much she does or doesn't understand about us or about her own condition. Articles like this (again, hopefully written by the subject) help give some potential insight. Because she essentially has no voice, it's almost natural to talk about her as if she isn't there. As she's grown we've been better about it, but because she doesn't express emotion it's near impossible to imagine what she might be thinking or feeling. I have several dreams a year where she speaks. I'd expect other parents do as well. The strangest thing for me is to have a child that has never asked us a single question. We see other families with 3 year olds that continuously ask "Why?" to everything you say. When you hear other parents complaining that their kids won't stop asking questions, I try not to remind them of the alternative.

autism_parent 11y ago
Please don't give up. My son is 16. He still shows fairly severe symptoms of autism. In all these years, I have longed to have one conversation with him, but that has never happened. However, to my surprise, he is also doing well academically through home schooling. He started out with a lot of prompting but now he can demonstrate his independent skill and mastery on fairly complex tasks - for example multiple choice tests in high school Algebra or English. By now, we know he is highly intelligent, but he has so many repetitive and OCD behaviors it is hard for him to function in the real world. He is learning to program and he shows some aptitude for it - he seems to be somewhat good (not yet surprisingly good) at finding bugs in short pieces of code. Our hope is that as he grows older, he will gain control of himself enough to be able to function in some assistive setting.
- fecak 11y ago
  Thanks for sharing. Giving up isn't an option. We've fully accepted the possibility that we may be supporting her for our lifetime, with the hope we can get her to the point of at least some level of personal independence. I've read several articles related to autism and software testing. We aren't nearly at that level yet, but your son could be a candidate for those programs. Good luck to you as well.

corysama 11y ago

Not the same, but related: a month ago there was a Reddit BestOf'd comment from a self-proclaimed autistic describing his early life and current situation. I found it fascinating. http://np.reddit.com/r/science/comments/33czht/study_of_95000_children_finds_no_link_between_mmr/cqjwxkm http://np.reddit.com/r/science/comments/33czht/study_of_9500...

memossy 11y ago

The book "The Reason I Jump" is another excellent take, translated by the author of Cloud Atlas. He wrote this via independent typing (not RPM) when he was 13: http://www.amazon.co.uk/The-Reason-Jump-silence-autism/dp/1444776754 http://www.amazon.co.uk/The-Reason-Jump-silence-autism/dp/14... It looks as if the ABA provision was sub-standard (RPM debate aside) as modern ABA in the Verbal Behaviour mold should be adaptive and rely less on the intensive table sessions (which are still a part unfortunately). Done correctly it can provide the tools for communication, although not everyone will be able to speak with words. One thing that is interesting is that many of the principals of ABA are used in our mobile apps today, I certainly learnt a lot when reviewing the research and formulating my son's programme and vice versa implementing the ideas and concepts to the mobile sphere..