A Question About Autism Speaks
06 Feb 2014, 9:53 pm
CockneyRebel wrote:
When you think of it, Autism Speaks is raping those of us who are on the spectrum of our dignity.
And how is this:_)??? Personally it seems to me that the people who are saying attacking Autism Speaks to the degree of bizarro are making autistic people seem to many in the general population like fools and so respect them even less.
(Is what you wrote a joke? Not asked in sarcasm. I genuinely am not sure. You sometimes have this wonderful sideways kind of humor.)
Anyway, Autism Speaks is composed of individual people. These people, individually and/or as a group surely do NOT speak for me in most ways, but they are helping other people the best they can and I applaud them for what they are trying to do and in many ways succeeding at doing. It's hard to do things and not just rant and rave about what other people do or do not do, and I feel a lot of love behind what they are doing.
ASPartOfMe
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07 Feb 2014, 5:54 am
CockneyRebel wrote:
When you think of it, Autism Speaks is raping those of us who are on the spectrum of our dignity.
Only if we internalize their message. Unlike most victims of literal rapes we have a choice. As of now they are not pointing a weapon at us and saying submit or die.
I do not like rape analogizes. I think it diminishes the both horror of rape and whatever is being compared to it.
_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
It is Autism Acceptance Month
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman
Last edited by ASPartOfMe on 07 Feb 2014, 11:09 am, edited 1 time in total.
07 Feb 2014, 6:39 am
Quote:
To me the point you are making about behavior being on a relative scale not making something good because it is a little less of the previous behavior does makes sense, but applying the analogy of rape to Autism Speaks goes way overboard and skews the entire value.
You're assuming I meant the analogy to relate to the severity of the wrongdoing. I didn't. I do not think that what Autism Speaks does is anywhere near as bad as raping people - but it is harmful, and continues to be harmful.
07 Feb 2014, 12:12 pm
Ettina wrote:
Quote:
To me the point you are making about behavior being on a relative scale not making something good because it is a little less of the previous behavior does makes sense, but applying the analogy of rape to Autism Speaks goes way overboard and skews the entire value.
You're assuming I meant the analogy to relate to the severity of the wrongdoing. I didn't. I do not think that what Autism Speaks does is anywhere near as bad as raping people - but it is harmful, and continues to be harmful.
Ettina, when you use the analogy of rape to make a point about relativity and severity (in that doing something less wrong does not make it not wrong) and then place this analogy of rape next to "Autism Speaks." People are going to assume that you meant the severity of rape to be applied there...and yes, we all know people at Autism Speaks are not actually raping people, but the way you worded it fuels people to react.
So how about the good stuff they are doing??? You conveniently left all of that out, presumably because it does not fit into the way you feel about something, and you want others to do the same.
I think you made an over-emotional choice of language much in the same way Autism Speaks has done in the past and is still being criticized and pounded for to this day. It seems it is perfectly alright to you for you and others to do it to them, but not alright for them to do it to you.
07 Feb 2014, 4:51 pm
Quote:
So how about the good stuff they are doing??? You conveniently left all of that out, presumably because it does not fit into the way you feel about something, and you want others to do the same.
What good stuff? I left it out because I am not aware of anything Autism Speaks has done that is actually helpful.
07 Feb 2014, 6:52 pm
Ettina wrote:
Quote:
So how about the good stuff they are doing??? You conveniently left all of that out, presumably because it does not fit into the way you feel about something, and you want others to do the same.
What good stuff? I left it out because I am not aware of anything Autism Speaks has done that is actually helpful.
http://www.autismspeaks.org/
Maybe you should do some research, then, as many good things are easy to find. When I read the comment above it causes me to wonder about who you are and how you are processing data. It raises a big question about the methodology you are using. Personally I believe in looking at as much evidence as I can find and trying to evaluate it as impartially as possible, and trying to spot and overcome my own bias while doing this is a big part of the endeavor of information gathering.
Let it be known that I never even heard of Autism Speaks until I came to WP and after several months of becoming acclimated began to observe all this sh*t being thrown at them by a lot of vitriolic sounding people. Nor have I ever contacted this organization (though eventually I may, if something of interest comes up for me), and I do not know anyone involved with this organization.. Nor do I consider them to be speaking for me, as I have many opinions about autism that are radically different than their own. I am just interested in all of this hullabaloo around an organization that is obviously doing so much to help people. I find it fascinating the way people here are attacking them, and in such an uninformed and biased manner.
Again, here Is the link to their website where you will find dozens of good things about them. Look it over carefully, please, and press lots of links which will lead you to even more good things.
http://www.autismspeaks.org/
And note the main reason I started this thread was because of this question I have about why there needs to be autistic person on the board of Autism Speaks, and I will be going back to that, but don't mind if the enquiry moves into some other related areas, as long as it actually is enquiry.
Verdandi
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07 Feb 2014, 7:04 pm
littlebee wrote:
As far as sorting and grading goes, you need to try to understand what it means. It is just another way of talking about correlating data by putting this data with other data and omitting some other data assumed and/or perceived to be non-essential. Also, someone or other does seem to be understanding what I am talking about, as a thread I started which focuses in large upon the subject of sorting and grading and has gone into this subject in depth received an average of 1500 hits a day in its first three months, and though it is recently slowing a bit, 2000 hits in the last 24 hours. Out of all these people somebody is understanding what I am saying, which is actually not even that difficult to understand. The human mind works by sorting and grading. You just are not reading carefully. Everything you or I say and think is done by sorting and grading, putting this concept next to this or that one. You cannot negate any argument by saying a person is sorting or grading, as in order to say this, you yourself have to be sorting and grading. It is the way one does it that is significant, not that one IS doing it, as everyone is doing it. I have already explained this to you more than once.
See, the problem is that your explanations about "sorting and grading" make no sense.
For example, in one of these interminable threads filled with your obtuse walls of text, you insisted on dividing autistic people into two strict groups (low functioning and high functioning), and insisted that certain behaviors, traits strictly belonged to the "low functioning" group. And both of your categories made it basically impossible for anyone to fit in them. When other people told you that this wasn't how autism works, you told them to stop "sorting and grading". This does not make sense, and it especially does not make sense in the context of what you were asserting about autistic people, and what others said to you to counter what you were saying.
I do not actually believe anyone understands what you are saying when you say "sorting and grading" but I do think there are probably at least a couple of people whose ideology aligns with yours and are thus less likely to question or critique your rhetoric. But, that's not the same thing.
And now you're criticizing Ettina for using rape in an analogy because it makes things seem worse than they are. You clearly do not understand how analogies work if you think she's wrong for doing so. And your response that Autism Speaks does "good things" is kind of irrelevant, because most abusers do "good things" to their victims sometimes, which creates uncertainty about their intentions at any given moment, and encourages a kind of "walking on eggshells" around them because they could blow up at any moment. This is also why your rebuttal about "only 62 seconds of torture" is pure apologist nonsense.
I swear to god your analysis is about as rigorous as a wet noodle, and you keep tying people up in these nonsensical discussions of yours while never ever saying anything useful or of substance.
07 Feb 2014, 8:15 pm
Hey Verdandi! I was just thinking something along the same lines. While I do agree that rape is a strong analogy for AS - in fact I really don't hate them, I am still looking into them - I understand what these posters are saying. They feel violated by Autism Speaks. I don't agree with that either, I don't feel AS has violated me, but they DO feel that. In that context, the rape analogy does make sense. Of course, it's not really a great use of the word, but I think many of us use it that way and we in no way intend to diminish the severity of literal rapes. A metaphorical rape is just a different thing. When I was burglarized I kept thinking it felt like a rape - clearly not true at all, but true that that's what it feels like.
07 Feb 2014, 8:37 pm
Quote:
And now you're criticizing Ettina for using rape in an analogy because it makes things seem worse than they are.
Yeah, I am:-)
Quote:
And You clearly do not understand how analogies work if you think she's wrong for doing so.
The analogy in itself was okay to illustrate a point. It was the way she used it that imo created an over-emotional and inflammatory affect, and as one person commented, was ill-chosen in that it trivialized rape. If she used the example of the holocaust and said killing Jews was still bad because only one Jew was killed instead of six million and used this to illustrate a point about Autism Speak not being good, would this be the same to you? Would you be saying the same thing if I criticized that? I think not.
Quote:
And your response that Autism Speaks does "good things" is kind of irrelevant, because most abusers do "good things" to their victims sometimes, which creates uncertainty about their intentions at any given moment, and encourages a kind of "walking on eggshells" around them because they could blow up at any moment.
Verdandi....good people do bad things, too. It is all relative and contextual, though generally there are certain agreed upon standards of behavior, and over time some social concepts seem to be to evolving more toward more compassion and tolerance.
So you are saying that Autism Speaks is an abuser and
Quote:
encourages"walking on egg shells" around them because they could blow up at any moment
???It is easy to see that this is not so. Just go to this link and peruse the extensive material there.
http://www.autismspeaks.org/
It looks to me they they are doing some pretty good stuff that far outweighs any kind of feeble criticism that is being made against them. By the way, I do not see this organization in any way as being perfect,
Quote:
This is also why your rebuttal about "only 62 seconds of torture" is pure apologist nonsense.
Here is the message by bad bad littlebee about torture, though I suspect most if not all of the people participating here have already read it or would have anyway, but I was in no way making a rebuttal of anything or apologizing for any kind of torture. I will talk about sorting and grading over there, maybe.....
http://www.wrongplanet.net/postp5900123.html#5900123
08 Feb 2014, 2:43 pm
Comments inserted in bold, plus a comment after the quote.
zer0netgain wrote:
Maybe because an NT simply CAN NOT understand the struggles of someone with autism like someone with Autism and some level to communicate can understand and convey to others.
When I first read this it made some kind of sense to me, but after thinking about it, it doesn't make that much sense. Personally I am still sorting this out, but I do not see how one person with autism can speak for all people with autism, so do I not see why such a person would need to be on the board. This is a big professional organization engaged in philanthropy, and they do not need to have on their board someone telling them how it feels to be autistic, whatever that subjectively means to this person which is entirely different than it would mean to someone else. This would be obfuscating, imo. I do not see this as the function of the board, and I think it may be short-sighted to see it the way you are describing. Moreover, there are surely autistic people employed in other areas of that organization, and from what I have seen, there does seem to concern about how autistic people feel, lots of concern about that . I quickly read the bios and it seems that people who are parents and relatives of autistic children are on the board.
It'd be like having a whole organization devoted to helping amputees but not having a single amputee in their governing structure.
I don't think it would really be exactly like that, though maybe in some ways.Maybe I will go into more detail on this point later. I am not even sure that the board is what sets the point of view of this organization from an emotional/psychological perspective. Maybe it does to some degree. Probably the Wrights, do, though:-)
It makes me think of the group of high school kids who do something to help refugees in Rwanda because it's the popular thing to do. They know nothing about their plight other than what they've researched, and how many are involved because it's the "in" thing to do?
Doesn't remind me of this at all. Have you even read the bios of these board members? Let me guess--no:-) Plus I am sure the refugees in Rowanda are glad to accept financial aid from any kind of so called do gooders, and I would question if all of these people are doing it because it is the in thing to do. I believe they are doing it because they have to some degree an altruistic motivation, just as the people in Autism Speaks. I do not know if you ever watch CNN people of the years presentations, but a lot of times the most incredible charitable organizations are started by teenagers or even elementary school age children, and these organizations burgeon and help many people..
Ordinary people can want to help those less fortunate, but when they exclude those they want to help from being a member of their team, it smacks of elitism.
When I first read this it made some kind of sense to me, but after thinking about it, it doesn't make that much sense. Personally I am still sorting this out, but I do not see how one person with autism can speak for all people with autism, so do I not see why such a person would need to be on the board. This is a big professional organization engaged in philanthropy, and they do not need to have on their board someone telling them how it feels to be autistic, whatever that subjectively means to this person which is entirely different than it would mean to someone else. This would be obfuscating, imo. I do not see this as the function of the board, and I think it may be short-sighted to see it the way you are describing. Moreover, there are surely autistic people employed in other areas of that organization, and from what I have seen, there does seem to concern about how autistic people feel, lots of concern about that . I quickly read the bios and it seems that people who are parents and relatives of autistic children are on the board.
It'd be like having a whole organization devoted to helping amputees but not having a single amputee in their governing structure.
I don't think it would really be exactly like that, though maybe in some ways.Maybe I will go into more detail on this point later. I am not even sure that the board is what sets the point of view of this organization from an emotional/psychological perspective. Maybe it does to some degree. Probably the Wrights, do, though:-)
It makes me think of the group of high school kids who do something to help refugees in Rwanda because it's the popular thing to do. They know nothing about their plight other than what they've researched, and how many are involved because it's the "in" thing to do?
Doesn't remind me of this at all. Have you even read the bios of these board members? Let me guess--no:-) Plus I am sure the refugees in Rowanda are glad to accept financial aid from any kind of so called do gooders, and I would question if all of these people are doing it because it is the in thing to do. I believe they are doing it because they have to some degree an altruistic motivation, just as the people in Autism Speaks. I do not know if you ever watch CNN people of the years presentations, but a lot of times the most incredible charitable organizations are started by teenagers or even elementary school age children, and these organizations burgeon and help many people..
Ordinary people can want to help those less fortunate, but when they exclude those they want to help from being a member of their team, it smacks of elitism.
Not to me, and even if so, it is a minor point compared to all the good they are doing. To me a lot of the people who are making all this noise about Autism Speaks have a bug up their b*tts. I suspect Autism Speaks is a symbol to them of something they are working out in themselves and projecting outward.
I do understand the main gripe and can see it clearly in that the way that organization talks about autistic people there is sometimes a tone of objectifying them, (plus if I were head of that organization I would allocate the funds in a different direction). The tone of objectification is gradually changing, partially due to some of the feedback, but I think the criticism is way over-blown, especially at this point, and more focus should be placed on the positive things they are doing and on communicating. This fight dynamic is to me like Don Quixote fighting windmills and is giving autistic people a bad name with the general public.
What I think is happening is that in many cases (though probably not all), people with psychological agendas are working out their stuff by fighting this organization and projecting their own personal anger and problems onto this organization, and this is not effective, not good for autistic people and actually harming them. And again, I do not agree with the approach of this organization in many ways, but they are doing good work and the best they can and they are listening and changing. I think some people are grandstanding off of what this organization is doing.
None of this is to suggest that people should not give feedback to this organization or that this organization cannot benefit by receiving feedback, as it surely can and already has.
08 Feb 2014, 8:18 pm
Quote:
The analogy in itself was okay to illustrate a point. It was the way she used it that imo created an over-emotional and inflammatory affect, and as one person commented, was ill-chosen in that it trivialized rape. If she used the example of the holocaust and said killing Jews was still bad because only one Jew was killed instead of six million and used this to illustrate a point about Autism Speak not being good, would this be the same to you? Would you be saying the same thing if I criticized that? I think not.
No, I didn't. I've tried to tell you that, but you won't listen. I was not meaning to put any of those rhetoric thingies on it. It was just an analogy. Nothing more than that. I'm autistic, remember? I don't always know what unspoken meanings people are going to infer from what I say. It's part of the condition.
And I've looked at Autism Speaks' website and haven't seen the 'good' they're supposedly doing. Can you tell me what you mean, instead of just assuming I'm being willfully blind? What, specifically, have you noticed Autism Speaks doing that you think is a good thing?
08 Feb 2014, 11:39 pm
Ettina wrote:
....And I've looked at Autism Speaks' website and haven't seen the 'good' they're supposedly doing. Can you tell me what you mean, instead of just assuming I'm being willfully blind? What, specifically, have you noticed Autism Speaks doing that you think is a good thing?
http://www.autismspeaks.org/family-services/tool-kits
If you click on the link above it will take you to one vast section of their even vaster website where you find many tool-kits, the links to only a few of which I have given below along with a few selected snippets describing some other tool-kits you will find there. (The word "more" at the end of the quotes indicates a live link on their website which will take you to the rest of the various articles....)
http://www.autismspeaks.org/family-serv ... s/advocacy
http://www.autismspeaks.org/family-serv ... m-tool-kit
http://www.autismspeaks.org/family-serv ... s-tool-kit
Quote:
Challenging Behaviors Tool Kit
Sometimes the difficulties of autism can lead to behaviors that are quite challenging for us to understand and address. Most individuals with autism will display challenging behaviors of some sort at some point in their lives. Autism Speaks has created this More...
Sometimes the difficulties of autism can lead to behaviors that are quite challenging for us to understand and address. Most individuals with autism will display challenging behaviors of some sort at some point in their lives. Autism Speaks has created this More...
Quote:
Employment Tool Kit
Autism Speaks would like to help you with your employment search by giving you tools and tips while you look for a job. As an adult on the autism spectrum, you have strengths and abilities that employers are just beginning to understand. We have written More...
Autism Speaks would like to help you with your employment search by giving you tools and tips while you look for a job. As an adult on the autism spectrum, you have strengths and abilities that employers are just beginning to understand. We have written More...
Quote:
Family Support Tool Kits
Family members and friends of individuals with autism are presented with many joys and many challenges throughout their lives. Learning that a family member or friend is affected by autism is a powerful moment. People respond with a wide array of More...
Family members and friends of individuals with autism are presented with many joys and many challenges throughout their lives. Learning that a family member or friend is affected by autism is a powerful moment. People respond with a wide array of More...
Quote:
First Concern to Action Tool Kit
If you have a concern about how your child is communicating, interacting or behaving, you are probably wondering what to do next. The First Concern to Action Tool Kit can help you sort that out. The purpose of this tool kit is to provide you with specific More...
If you have a concern about how your child is communicating, interacting or behaving, you are probably wondering what to do next. The First Concern to Action Tool Kit can help you sort that out. The purpose of this tool kit is to provide you with specific More...
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The Postsecondary Educational Opportunities Guide is designed to help you and your family explore the different opportunities and learning environments after leaving high school. With only about one third of youth with autism attending college in young More...
Quote:
School Community Tool Kit
A tool kit to assist members of the school community in understanding and supporting students with autism. The purpose of this kit is to provide helpful information about students with autism and tools and strategies to achieve positive interactions and More...
A tool kit to assist members of the school community in understanding and supporting students with autism. The purpose of this kit is to provide helpful information about students with autism and tools and strategies to achieve positive interactions and More...
Quote:
Download the Transition Tool Kit here! The Autism Speaks Transition Tool Kit was created to serve as a guide to assist families on the journey from adolescence to adulthood. Anyone can download the Transition Tool Kit for free! You can More...
Go to the website and see it all to be amazed and feel gratitude toward this organization which you and all of us should be thanking, imo....I never realized how much they are doing...I was just kind of dipping my toes into the water of enquiry about this organization until now and never really investigated their website....
ASPartOfMe
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09 Feb 2014, 6:03 am
A toolkit won't do me any good if a potential employer sees one of there ads describing my condition as demonic. I won't need any toolkit if I am forced to take a cure they help find based on legislators they influenced with there money and advertising. A toolkit won't do another person any good if she or she is institutionalized or killed based on the view of autisim as a demonic condition the use in fundraising.
Fair or not a person or organization can undo all the good they do with one action. And they have repeated the action multiple times despite being told not to.
_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
It is Autism Acceptance Month
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman
09 Feb 2014, 9:38 am
ASPartOfMe wrote:
Quote:
A toolkit won't do me any good if a potential employer sees one of there ads describing my condition as demonic.
What are you talking about? I have not seen such an ad if there even is one, which I doubt, so it is questionable if an employer ever will see it.
Quote:
I won't need any toolkit if I am forced to take a cure they help find based on legislators they influenced with there money and advertising.
Do you need such a toolkit now? Also, I do not believe anyone is going to force a cure on you.
Quote:
A toolkit won't do another person any good if she or she is institutionalized or killed based on the view of autisim as a demonic condition the use in fundraising.
So you are saying these tool kits will do no good if someone has such a view but will do good if someone does not have such a view? What if a person these tool kits are helping doesn't see whatever it is you are talking about?
Quote:
Fair or not a person or organization can undo all the good they do with one action. And they have repeated the action multiple times despite being told not to.
What exactly is this action IS this they have repeated multiple times?Told by whom not to do it? Whatever this action is, if it even exists, what if most of the people those tool kits are helping (and I just listed a few of these wonderful tool kits) do not even know about this action? Would the help still be undone? Makes no sense to me.
(I find your message interesting,)
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