"I resign my roles at Autism Speaks" John Robison
30 Nov 2013, 6:32 pm
Also, I think if one wishes to be "compassionate" it's generally a good idea to oppose torture, not try to make excuses for it.
You are missing that there are not two distinct groups here. You seem to think that autistic people are neatly separated into "low functioning autistic people who can't work, can't take care of themselves, will never marry" and then "high functioning autistic people who can do all of these things." But it doesn't work that way. There are autistic people whom you might describe as "low functioning" who do work, who do marry, who do take care of themselves and there are autistic people whom you might describe as "high functioning" who cannot work, who do not marry, and who are not able to take care of themselves. There are many combinations of these traits, hence the autistic spectrum.
Note that my argument here is that you cannot "grade and sort*" autistic people so easily into two strictly defined groups. That you cannot easily categorize autistic people like this.
I am high-functioning in terms that high-functioning means being autistic and not having an intellectual disability, a definition that user KingdomOfRats pointed out to be the distinction of high-functioning or low-functioning in other threads.
In spite of being high-functioning I am on disability with a rather bad rapport about self help-skills, taking care of myself, being very prone to abuse by other people, being detached from reality (not in a delusional way, but not being able to comprehend it in a way), sensory overload, low executive function and more = not employable, need supervision from another person.
But my being not able to take care of myself will not be the not being able to take care of oneself of someone really low-functioning eg. wearing diapers in adulthood, not being able to brush teeth.
Still my self-care is not high-functioning, but another degree of dysfunction compared to normal.
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30 Nov 2013, 7:52 pm
Also, I think if one wishes to be "compassionate" it's generally a good idea to oppose torture, not try to make excuses for it.
You are missing that there are not two distinct groups here. You seem to think that autistic people are neatly separated into "low functioning autistic people who can't work, can't take care of themselves, will never marry" and then "high functioning autistic people who can do all of these things." But it doesn't work that way. There are autistic people whom you might describe as "low functioning" who do work, who do marry, who do take care of themselves and there are autistic people whom you might describe as "high functioning" who cannot work, who do not marry, and who are not able to take care of themselves. There are many combinations of these traits, hence the autistic spectrum.
Note that my argument here is that you cannot "grade and sort*" autistic people so easily into two strictly defined groups. That you cannot easily categorize autistic people like this.
I am high-functioning in terms that high-functioning means being autistic and not having an intellectual disability, a definition that user KingdomOfRats pointed out to be the distinction of high-functioning or low-functioning in other threads.
In spite of being high-functioning I am on disability with a rather bad rapport about self help-skills, taking care of myself, being very prone to abuse by other people, being detached from reality (not in a delusional way, but not being able to comprehend it in a way), sensory overload, low executive function and more = not employable, need supervision from another person.
But my being not able to take care of myself will not be the not being able to take care of oneself of someone really low-functioning eg. wearing diapers in adulthood, not being able to brush teeth.
Still my self-care is not high-functioning, but another degree of dysfunction compared to normal.
Yes, I think KingdomOfRats has posted some really insightful and informative comments about functioning labels, autistic severity, what the autistic spectrum represents, etc.
I am "high functioning" in that same sense, but I also have significant problems with self help skills, taking care of myself, being prone to abuse by other people, sensory overload, low executive function, and more. I mean, not identical to you, but many issues that could be categorized similarly and cause me significant difficulties. I tried to make this point earlier in the thread and mentioned that some things I find very difficult to talk about because of associated trauma.
And again agreed about self-care problems not being the same as "wearing diapers" although there are individuals who would be described as high-functioning who do fit some of those descriptions.
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01 Dec 2013, 12:19 am
Callista wrote: ( 0n page 17 you can read the entire message::
And functioning labels are a lovely way to shut up autistic self-advocates you don't agree with, like so: "You can communicate. You're Not Like My Child. Therefore, what you say doesn't matter. And if you can't communicate, of course I have to speak for you, so you don't get a say either." You see what that kind of thing does? It is a great way of saying that anything an autistic person says, feels, or experiences is absolutely irrelevant, and that the only people who can say anything relevant about us are people who aren't autistic.
Sure, I see this, and you have expressed it very articulately.No problem with this. You wanted to included under the tent of autism and not excluded, so you can better get help help.
Do you really want to be silenced like that?
Who is silencing you? I am missing this.
Instead of trying to speak for other people, or letting non-autistics speak for you, work toward establishing universal human rights and making them listen when autistics speak for themselves.
This makes no sense to me. Are you saying that the leader of Autism Speaks should not be trying to help autistivcs but should be trying to help all humans? I do not know for sure, and I am not even really on her side from the little I do know,, but I am suspecting she has done much more to help people suffering because of autism, whatever level of functioning and however anyone defines these levels, than anyone on this thread except maybe Alex has done..I don't really know for sure, but I am suspecting this is probably the case.
Earlier today I posted on my documentary thread, a link to a video from an ABC TV show , What Would You Do?, and it looks like Autism Speaks had a hand in the making of this episode on autism. Actually I posted it in order to talk about documentaries and how material gets slanted, and will be doing that, but a episode like this obviously greatly influenced the American public, as that show is very popular and people are very impressionable. Though this episode was another example of what I mean by over-emotionalism, it does make an interesting case in point re the discussion on this thread here..
Last edited by littlebee on 01 Dec 2013, 10:48 am, edited 1 time in total.
01 Dec 2013, 3:07 am
What I want is for people who aren't autistic to stop making our decisions for us. I want them to stop assuming that the neurotypical perspective on autism is the only one that matters. When we communicate, we need to be heard. And I don't just mean talking. I mean the little three-year-old who's never said a word needs to be listened to when he screams because his sweater itches.
You know one of the best ways to silence a cognitively disabled person? It's to say, "If you're able to speak for yourself, you're not autistic enough, so what you say doesn't count." Or, "You're speaking, but you sound odd or use a communication device; therefore, you're too disabled to know what you're saying." Or, "You can't speak. I have to speak for you." The Not-Like-My-Child argument is a rhetorical trick that's often used against adult autistic self-advocates to claim that what we say doesn't count. It's a way for NT organizations like Autism Speaks to keep power for themselves.
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01 Dec 2013, 8:51 am
Hi Callista. I've read your message twice and thought about it, and now will be reading it a third time and responding. First, I get your point about the woman I quoted, but I can see where she was coming from and it still makes sense to me.because I am seeing it from her perspective, though I can also see it from your perspective; however to me your perspective appears more nebulous, meaning more difficult to pinpoint and understand, and I think it would be this way for many people, which is why you are having the problem with other people not understanding. I don't know if you have ever tried to turn things around and look at it from their angle. From that angle it may be different It may not be about silencing you so much, but about something else. To me that is the beginning of communication..Also, from what I know about Autism Speaks which is mainly what I read here and some stuff on line after reading here, I do not see how they are harming you. As I wrote in my previous message, it seems to me they are probably opening the hearts of people to be sympathetic to autistic people, and this probably includes people who are visibly not quite like other people and who would previously be scapegoated or misunderstood for being odd. I notice you did not reply to this part of my message in which I mentioned the segment on autism from the tv show, What Would You Do?
My response inserted in bold into yiur message below.
What I want is for people who aren't autistic to stop making our decisions for us.
To me this makes no sense. Though not an exact analogy, it is kind of like the blind person advocating to get a driver's license. ( I know of a blind activist who many years ago actually tried to do this).
I want them to stop assuming that the neurotypical perspective on autism is the only one that matters.
Well, it it is their money or if they're funding a program and doing huge amounts of work and getting other people to donate a bunch of money, I don't see how you can stop them by making this kind of argument. Though there may be some truth to your perspective,, to me it sounds kind of lame.
.When we communicate, we need to be heard.
Everybody does want to be heard and understood when they communicate.
And I don't just mean talking. I mean the little three-year-old who's never said a word needs to be listened to when he screams because his sweater itches.
To me this is way over generalized. Who do you think is not listening? The parent who put the child in an itchy sweater? The teacher? And I would question if the child is screaming merely because the sweater itches. Yes, it could be that, but something else, too. I used to be a preschool teacher and I have had plenty of experience with young children, plus I have raised two children and watched my grandson when he was little..And how do you even know why the child is not talking? There could be all kinds of reasons, meaning the itchy sweater, though uncomfortable, represents something else to the child, also, and this is the real reason why he is crying. I think this child would have a better chance with myself as his parent than with someone who thinks the child is crying just because the sweater itches. Of course this is my opinion and maybe not the opinion of someone else. To me someone who thinks it is JUST the sweater might not really be listening to that child. And, yes, I would take off the itchy sweater.
You know one of the best ways to silence a cognitively disabled person? It's to say, "If you're able to speak for yourself, you're not autistic enough, so what you say doesn't count."
I don't see anyone here saying that it doesn't count. It just doesn't count to them in the same way it counts to you.. Like I said, it is about sorting and grading and into which category various people place certain material in order to get certain results, according to their own subjective context and agenda. Autism speaks does not seem to have the same agenda as you do, which is probably why they are getting better or at least more dramatic results..
Or, "You're speaking, but you sound odd or use a communication device; therefore, you're too disabled to know what you're saying." Or, "You can't speak. I have to speak for you." The Not-Like-My-Child argument is a rhetorical trick that's often used against adult autistic self-advocates to claim that what we say doesn't count. It's a way for NT organizations like Autism Speaks to keep power for themselves.
Did you ever try to approach from the perspective that you can't control the way other people think? It took me years to learn this, but now I focus more on myself, and the results I am getting are much better. This approach affects pother people, too, and opens the door to better communication.
Also, I don't think the not like my child argument is a rhetorical trick. I think there are too different kinds of children. If excrement was smeared all over the walls and furniture in my home or if my child was hitting his head against the wall at the risk io damaging his brain, he would probably be getting more attention than my other child---whoops, other child, sorry about neglecting you like that. So eventually the first child would need to be put in a facility, though hopefully not, so I could focus on the other child and give him what he needs, and that would cost a lot of money. I would not expect you to help me with this life threatening condition where I was about to kill myself or knock one of the children around, but I could maybe get some help from Autism Speaks.
Callista, you sound like a nice person, and I wish you and others here the best, and I appreciate you trying to communicate with me, but from my perspective, from what I have read so far, yes, Autism Speaks does not seem to have that much of an idea what being autistic means. What does it mean? Please tell me. Of maybe you can't speak about it, and I am supposed to just intuit? I am autistic, too and have had a life of all kinds of horrible suffering and am still just barely making it day by day and often flirting with despair, but I can tell from reading what you have written you have no idea of what my experience means to me or what helping me would mean. You could help me by listening to me and not thinking about yourself so much. I not saying this to be mean or sarcastic. This is really how you could help me.
Last edited by littlebee on 01 Dec 2013, 1:34 pm, edited 1 time in total.
01 Dec 2013, 9:42 am
Eloa wrote:
In spite of being high-functioning I am on disability with a rather bad rapport about self help-skills, taking care of myself, being very prone to abuse by other people, being detached from reality (not in a delusional way, but not being able to comprehend it in a way), sensory overload, low executive function and more = not employable, need supervision from another person.
But my being not able to take care of myself will not be the not being able to take care of oneself of someone really low-functioning eg. wearing diapers in adulthood, not being able to brush teeth.
Yes, this is what I meant.
Right.
The only reason I have a job is that I luckily fell into this crafts thing and then refined and developed my skill due to a certain fanaticism and workaholism that really was a disorder, imo..In my twenties I was a preschool teacher, but that wouldn't have ultimately worked out in terms of advancement in that profession such as becoming a director because of lack of social skills at the time, though it would have worked out if I was the way I am now. Also I very luckily fell into certain living circumstances where I have a quiet environment in a sophisticated urban area where it is very easy and fun to do everything.This almost didn't work out either, as I had all kinds of problems with noisy neighbors for several years and did not have the social skill to be able to handle it, but now all of that is abated. Still my situation is kind of tenuous and sometimes I am in a state of terror about losing it, but trying to work on that. I am keenly aware that many others are in a much worse situation than myself and that things did not go that well for them. I do not like to talk about my past as it was very difficult, and I went through all kinds of horrible suffering. It's really kind of amazing to me that I survived. People are always saying I should write a book about my life.I want to tell people what I've been through, but its in the past. Another thing, I always sought help and received it and from the age of twenty was taught to focus on myself and take responsibility for my own negative emotions and not blame other people. I had many very unusual opportunities to receive certain teachings, and I understand most people do not have these kind of opportunities.
However, to anyone reading, do not underestimate the power of speech and what can be communicated on a medium such as this. It IS the world.
02 Dec 2013, 1:38 pm
Mr Robison put into words what I have been longing to say for a good many years. The words that I had in mind were much more offensive, and would only serve to further the purpose of those that call us "defectives." This was long overdue, and could not have been put into more concise terms than was written. I thank Mr. Robison for his doing this. It took a lot of guts, and has earned my respect.
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26 Dec 2013, 1:17 pm
Good message. but I don't think it takes a lot of guts to resign from an organization whose policy you disagree with. It would be the natural and intelligent thing to do, but kudos to him anyway for doing that and making an effective public statement of disagreement with policy.
I do not know much about Autism Speaks, though I am gradually learning about this organization..
http://drugfreeadd2.reachlocal.net/default/
It looks to me like they are trying their best to do some good work and help people, and they are actually succeeding., I notice there is a thread on WP about boycotting this organization. To me a lot of the material being written there is not well thought out. I cannot see the sense of trying to demolish this organization, which it seems these people who made this boycott thread would be happy to do (not that they have any chance of succeeding, as Autism Speaks is in gear and so big and doing services that are actually really helping suffering people). I think these kind of spoilers would need to first give something to replace the services for all these families before they make that organization go away, not that they even really could make it go away.. Also, if you want to change an organization, sometimes, thought not always, the best way to do it is from within.
And yes, dialog will affect what is happening if the people who are being criticized are reading some of the feedback, which they probably are, so it has to some degree probably affected them and given them insight. But what if the people giving a lot of the feedback do not have that much insight themselves? That is all turns into a great big tower of babble, with some affect, but not much, and a lot of it so negative it actually has the opposite result of what is intended.. Feedback was given on the hyperbolic rhetoric and tone of one video which caused them to remove it from their website, so point well taken: http://content.time.com/time/health/art ... 959,00.htm This surely caused them to rethink certain aspects of their organization, and continued public feedback will surely still affect them to some degree, but one thing that is problematic is constant continued reference to this video made in 2009, over four years ago, which has long since been removed from their website. I think some people on Wrong Planet are stuck and not thinking comprehensively, which I guess could be because they are autistic, though actually all kinds of people do not know how to think comprehensively.
I do think public dialog can be a part of changing the world, which is why I am writing here, and I know my opinion will not be popular, so give me some kudos:-) but when the dialog turns into a rant and over-blown rhetoric (not talking about this person's resignation), then it becomes the same kind of thing that is being criticized, so not active thinking, but reactive thinking, circular thinking.
Last edited by littlebee on 26 Dec 2013, 3:10 pm, edited 2 times in total.
26 Dec 2013, 1:38 pm
Ok, you guys, she's baiting you again. If you respond, you feed her.
Also, I think this has something to do currying favor the people she thinks are giving her all the page hits which she keeps mentioning. Does anybody else here count their page hits and then talk about it?
Don't feed her! If you refuse to feed her she might stop bullying and insulting people.
26 Dec 2013, 2:41 pm
Also, I think this has something to do currying favor the people she thinks are giving her all the page hits which she keeps mentioning. Does anybody else here count their page hits and then talk about it?
Don't feed her! If you refuse to feed her she might stop bullying and insulting people.
Well..It's a well thought out.. intelligent opinion..
Your personal attack against her here..does not change that fact at all..
When people address the topic at hand..that is intelligent conversation...
When people attack the person who discusses the topic in a personal way..
That is not intelligent conversation..
At least per the rules of logical discourse...
Personal attacks are at the bottom of critical analysis...
The facts that exist about the organization do back up the claim here made by Little Bee..
The personal attacks against the organization and against people here who simply seek the truth of the situation..are basically just idle chatter....
But i for one am not afraid of the truth..regardless of what the 'herd' thinks....
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26 Dec 2013, 2:53 pm
Well that is a mixed bag. You cannot in good conscience let wrong ideas stand, especially if a lot of people will be reading the material. Secondly, your own ideas might be wrong. That is why we have dialog---to try to sort these things out and dialog does succeed. I suppose an alternative is censorship of speech, but that is way far worse, not to imply that dialoging is even bad..
Also, I think this has something to do currying favor the people she thinks are giving her all the page hits which she keeps mentioning. Does anybody else here count their page hits and then talk about it?
As I recall I did casually mention page hits twice in regard to particular contexts (and it seems you are avidly following what I write, which is fine), but page hits can be interesting and tell you something or other, maybe, and sometime I will write about that....Also, you have no idea who is reading my threads or why. I do have much more of an idea of who is reading than you do, since I have been able to observe various fluxuations according to shift of topic and other factors. So you seem to be saying I went to all the trouble to write this recent message (which actually involved a lot of deep thinking, time consuming research and reading of various material) in order to pick up some readers from Autism Speaks???:-). The main readership of my threads are people interested in having better understanding of what is autism, of unlocking for themselves and possibly also helping others to do so, the profound mystery and puzzle of autism..
Don't feed her! If you refuse to feed her she might stop bullying and insulting people
It is highly questionable whether I am bullying anybody. It was instilled in me as a child not to ever do that and to always stand up for any child that was being bullied. In fact I have never bullied anybody except for one small incident in my life about ten years ago when my older daughter and I kind of ganged up on my younger daughter for a few moments and this still bothers my conscience to this day, but it could easily be construed from your post that you are bullying me. I am participating on WP with a lot of love in my heart and the best wishes for autistic people of any level of functioning and all people in general.
Note that you did not respond to any of the idea material in my message, but are basically making a personal attack, and note, I have and always do put real idea content in my messages, whether you disagree with that idea content or not. I know it is a form of Work to respond to ideas that disagree with own ideas, as sometimes one just feels that ones own ideas are right, much in the same way one is criticizing other people for feeling autistic people are inferior or whatever. I think there is another level of interacting that involves dialog and deep thinking that will help sort things out..
The reason I have come back to this thread just now, though I always intended to when things cooled down, is because of this message written on a thread I started with the best intentionsin order to look at the Judge Rotenberg Center, which I became interested in after reading about the shock treaments on this thread. And you can see that this thread is well designed and with the intent to impartially enquire into this subject matter. What Vernandi has written is so untrue that I felt this would be a good time to begin participating here again.
http://www.wrongplanet.net/postp5815367.html#5815367
Note, the message previous to this one is intended to be kind of introductory and get the ball rolling on this thread again in the direction of enquiry.
I do not really know much about you except I am assuming you are a very sensitive person who cares about other people and is suffering in some way, much like us all, and what has happened is that I have come to represent something very big and important to you that maybe you are thinking is causing your own suffering. I think this kind of thinking and exaggeration can happen with any of us, and especially with people who are autistic. I have surely seen it in my self.
I do not have much time now, but I will go over my previous message with a fine tooth comb and see if I can find any flaws in it, and I would surely be greatly for any kind of feedback.
26 Dec 2013, 3:24 pm
As long as we're all in fervent agreement that anybody on the other thread who objects to Autism Speaks has no insight, we're ok. There was nothing inflammatory about that comment.
Ironically, I'm not really even against AS or a cure. I don't agree with the way they describe Autism, but I am all for a cure for whomever can be cured and wants to be.
And yes you do use bullying tactics - kicking people out of threads, demanding they remove language that you don't approve of. What do you call that if not bullying? People on this forum can be really vulnerable to those kinds of tactics, which I think is why you do it here.
26 Dec 2013, 4:03 pm
What I actually wrote:
Any chance your own way of processing data is kind of missing the mark and over generalizing and exaggerating in this and some other instances? And then certain experiences are feeling and seeming very intense to you? I think you may be enabling and encouraging other sensitive people to think and feel they are being bullied when they are not, and even turning some of them into into bullies, not to imply that real bullying does not exist here and many other places or to suggest that it should not be addressed..But what you are doing seems to me to be more a form of enabling which is quite unwholesome. People who enable do it with good intent, I realize, and they do feel they are helping people, but that kind of behavior is dysfunctional and does not lead to healthy relationships, especially when it turns into a form of vituperation which can eat people up from the inside out like poison.
26 Dec 2013, 4:17 pm
wow you clearly edited it out (in fact after my first post, you edited it twice). You do know we can see that, right?
I'm just curious, did you go find all those other posts I mentioned too?
Can you not admit that you wrote what I said you wrote and you took it out and then pretended you didn't say it? I love the condescending spin you put on your denial. how I'm enabling and helping people feel like they're being bullied. C'mon admit you deleted it.
If you want I can go find those other posts you made also, or do you want to deny you did those things too?
26 Dec 2013, 4:51 pm
I edited out of a couple of double words and one sentence run into another without a space after the period. I do that when rereading my own message and I catch a typo I missed in the beginning..
I'm just curious, did you go find all those other posts I mentioned too?
Yes, though I did not have to, as they are both clear as a bell in my mind, and they are there for anyone to see and most people reading here already have.
Can you not admit that you wrote what I said you wrote and you took it out and then pretended you didn't say it?
No. I do not do that. To me that would be immoral and against my conscience. It would cause me suffering if I did something like that..
I love the condescending spin you put on your denial..
how I'm enabling and helping people feel like they're being bullied.
There is truth in that
C'mon admit you deleted it.
No I did not delete any kind of idea content, and you are getting scarey..
If you want I can go find those other posts you made also, or do you want to deny you did those things too?
Re these posts, just about everyone reading here has seen them, and imo you are trying to divert the topic from enquiry for whatever personal reason. I have compassion for you..Next time just quote the message. I always do that in any situation where I am disagreeing with another person. think most people do. Then if there is opposition your comments are covered in case the person you are responding to edits the message. Most everyone here does that.
I think you are trying to get this thread closed down, and I hope your tactic doesn't work..There are important ideas being discussed here and with the best of intention on my part..
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