A Question About Autism Speaks

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Littlebee, I think you're missing something important here: when people ask to see some good things that Autism Speaks has done, posting links to sections of their site is not showing that.

Any organisation with a web presence will use that visibility to promote a positive corporate image - it doesn't matter if that organisation is Autism Speaks, the JRC, or some company selling furniture: all you'll see are glowing reports and a positive image. There wouldn't be any other way, if the organisation seriously expected people to use their services or products.

So if you want to make an objective evaluation of any organisation's effectiveness, irrespective of what it is they're involved with - you will need to look everywhere except at their own self-promotion.
Use that as a starter, a pointer, by all means - but in and of itself, it can never be a conclusive end result.

Before I proceed any further on this thread and reply to Cornflake in great detail:-)---have already written the message, but not posted it yet as I want to go slow-- I would like to acknowledge this message, which I think is a very good, and will reply to in more depth in the future.

This is imo a minor point in terms of the enquiry here, so I do not want to dwell on it except to mention that many people do feel that the use of certain words applied to more trivial contexts does diminish in people's minds the severity of certain things, so sometime and somewhere on WP in the future this might be a kind of interesting subject to enquire more deeply into..

Thanks for this. I see this as an important point and find it to be very helpful.. littlebee

I spent some more time on the Autism Speaks website too. I think I understand the problems a lot better now. What I can say about Autism Speaks is that IMO they are not evil. I believe that they HATE Autism for sure, but they do not hate the Autistic person.

Yet we (some of us) feel that if you cured us of our Autism, you would take the person that we are away, so we don't want that cure. In a way, to hate Autism but the not the person doesn't make sense because of that, since to cure it you would have to do away with that person that you love in favor of a whitewashed replacement.

There are so many ethical, moral and personal quagmires involved, I don't know how this will ever get worked out. But a cure is going to be a problem for those of us that don't want it (to say the least), yet I still don't think calling AS evil is the solution either.

There is a picture of the AS founders with their grandson on the website, you can tell that kid loves them and they must be very loving grandparents to him. But yet they want to do that whitewashing thing to him. And what will he feel about that when he's older?

So how do we figure this all out - I can understand them wanting their kids to be able to have a career of their own choosing, more choices in life than many of us have had - but then I know a lot of LF Autistics from being on this website and some of them are very happy being who they are.

There is just so much to take into account, even that fact that many adults on the spectrum wish for a cure.

How do you reconcile all of this? Beats me.

I think this is what it boils down to.

Really, I think the easiest thing for them to do would be to simply change their name to something that actually represents who they are. Then there wouldn't be the constant question of who does and does not need to be on the Board.

If it was called "Parents of Autistics United" no one would say they need an autistic on the board. It would be understood that the organization was about the parents of autists, not autists themselves.

FWIW, I am a parent. Not an autist. I see nothing wrong with groups of parents of children with any kind of disability uniting. It's not an easy road and support is needed. But to state that this group of parents, who are unafflicted by the disability their children have, speak on behalf of those who actually have the affliction (sorry, hate to use this kind of term, but it is the one that fits because it expands beyond autism to any kind of disability), is ludicrous. They speak for themselves (and have a right to have a voice), and they even speak for their children (as parents often do), but they do not speak for everyone who shares the same condition as their children.

They chose the wrong name. I think in the beginning, it may have been with good intent because they wanted to give their children a voice. But at this point, I find the presumptuous nature of the name offensive.

believe it or not but autism speaks is an angel compared to the group they merged with some years ago; DAN, better known to many of us as defeat autism now,not surprisingly they kept that quiet after a little mention on their website-they also kept quiet the project they paid everyones favourite disgraced sacked doctor; andrew wakefield to work on,public donations spent on andrew keeping the MMR myth alive,his BS reports in the UK has killed and made sick many children due to their parents still being frightened by his fraudulent reporting.

Note: I wrote the below yesterday but did not post it as I wanted to reply to Wozeree first, but after reading this message today I have edited out an extensive passage in which I described my personal terror in writing to you, Cornflake because you are a moderator. Here is the original message without the part about terror.

Hey Cornflake...I assume you are writing not as a moderator but just to share these ideas so I can maybe look at things in a new way and learn something.. I must tell you, though, that it is hard for me to respond to this because you are a moderator, and I have fear as in my mind that you will censor me if I disagree with you, or maybe you will get mad at me for saying this
((edited out a very long passage about myself being autistic and my own personal terror which I was feeling yesterday but fortunately am not feeling right now except very mildly.)).

"Cornflake" wrote:

Agreed, any organization or person, for that matter, tries to present themselves and their services in the best possible light, and many, if not even most, will omit possibly relevant data to do that, so good point, but here's where I disagree with what you wrote: On my thread about the JRC and torture there, it has been pointed out to me regarding the picture slide slows of 149 pictures, which I personally found quite impressive, that they selected these pictures to show their center in the best possible light, and if any horrors are occurring there.of course omitted those kind of pictures. That is obviously a very good point, and at this center it seems they previously destroyed videos, had all kinds of secrecy and restraints on their staff to hide maltreatment, used new versions of their shock device that were not FDA approved, etc. So !00% agreed, and to find out what was happening was very difficult, as people were duped, but eventually people did find out by looking past the veil, and that is good. Of course what happened there does not necessarily equate to what is happening now, though there could be some of this same stuff still happening, and I think it is reasonable to be suspicious, especially since so much happened there previously. By the way, it sounds on the JRC thread that I am supporting that center, but actually I am just enquiring into it.


This makes sense, of course, but in this instance I cannot see how it applies, as the material I have linked to is not self promotion, but rather actual services they are providing, such a tool kits designed to help people. If I am autistic or have an autistic child then I have access to this material, and I assume it is genuinely helping some if not even many people, though some other people may not have been helped that much, but I have no real way to find out who these tool kits have helped and how much it has helped or not helped them. If anyone has any suggestions on how to do this I am interested, but my time is limited, and also, I am not really interested in promoting Autism Speaks, but am here more for enquiry into various questions.


Agreed, but this can go either way. For instance whatever ads or videos they made in the past can surely be a starter in discrediting them, but I did not notice you leaving such a message when people used these as evidence, which is probably why responding to your message has aroused so much terror in me (though I am not saying this is the root cause of my tendency to experience extreme terror).

What I find the most interesting about your message, the desire of which to communicate about overrides my personal terror, is the use of the word "objective." This is one of the key principles of my entire life--to try to be objective-- and why I married my ex-husband (now dead) who when I first met him when I was twenty explained to me the difference between the words objective and subjective, which terms up to that time I did not understand, and the minute he explained it I knew immediately that this is what I wanted to be---objective:-). It is kind of sad funny looking back at it, as philosophically I now question if in terms of conclusions people draw there is ever a conclusive end result of being literallyobjective, as different people have different contexts. I think the two things we have to work with are logic and compassion and out of a combination of the two can results the mind of compassion, but people can have compassion without that much logic and logic without that much compassion, and this can create an imbalance. Personally I have felt some people to be angry with me for what I am writing on WP and I think a lot of times it is because they do not understand the logic of what I am saying. However, though, I may be wrong, I believe the approach I am taking will ultimately lead to greater compassion.

As I have said, I think the approach of Autism Speaks is in some ways objectifying autistic people (treating them as objects, so stereotyping them and not seeing them as individuals), but I think this is being overplayed by people who are objecting to this organization, and they are missing the broader picture, but maybe I am missing something, too.

Anyway, Ettina said she could not see anything good that they are doing, and I have presented some actual services they are providing. I do not know how I would have found these unless I went to their website which presents a comprehensive picture of their actual services. I do not see any other way I could present something good they are doing except possibly join that organization and then tell about my own experiences or interview someone else who had some good experiences there, but of course all of this could still be slanted. I think presenting that there are these tool kits is technically less slanted as it is easy to see actual information is being given that can help actually help people.

For example there are even tool kits showing how to help autistic children deal with dental self care and getting haircuts, as these are problem areas for some of these children. This and these other tool kits is probably really helping people.

But if we are to go into the angle of Autism Speaks objectifying autistic people and not seeing them as individuals, which I think may be true in some respects though is possibly being overplayed, then to reconcile from both of these angles may not be so easy. This is the major insight for me right now. I think it is possible to change things on the outside of oneself and people should try to interact and change Autism Speaks if they think their approach should be modified, but I also believe that sometimes something external can take on larger than life proportions---and the ultimate reconciliation needs to come from within, and not talking about submission to injustice here.
((Edited out somewhat long passage about explicit and implicit knowledge)).

My original question is why there needs to be an autistic person on the board of autism speaks. I think it applied to this subject of implicit knowledge as expressed by doing. It is the knowledge a person has and which moves him. It is understandable that no one wants to have something they do not understand imposed upon them by people they think and feel do not understand them. However, I believe the subject is more complex than this.

cornflake please stop being so terrifying!

I think the problem really boils down to THE CURE, and the Objectification - except it's not really even just objectifying, but vilifying. I absolute agree with you little bee about their website, I don't see how it could not be a tremendous help to children with Autism and their parents and siblings, but the C&O obscure it or make some people feel AS is still in a negative balance because of the other stuff. So you can quote the website all you want, but it won't change things (I think that's what people have been trying to tell you). I don't have the same horror of them, but I am not diagnosed and so it's different for me, I'm not OUT THERE as autistic dealing with whatever ramifications may be happening due to AS.

And that one voice of JER on the board - he kept trying to tell them that it wasn't a cure that was needed, but a support and education, etc that was needed. That's the point about having someone on the board - Autism is the Enemy (making us the enemy) or Autistic people are just different and can thrive under the right circumstances. And the gap between those two things is just too wide to say, ok it's ok not to have somebody with Autism on the board. I agree with that point, there should be more than one person on the board - but as has been pointed out, it's not really about Autism Speaking, but about getting rid of Autism. SO there you go. What is going to make them change?

Moderation =/= censorship.

So... what you're saying is that you linked to information on the AS website about services that AS provides, but it's not self promotion by AS about the services it provides? That makes no sense.
You're answering the question asking for some good things that AS has done with links to services they offer; you appear to be conflating two different things and presenting it as a done deal.
By that logic, Autism would have been "cured" years ago by magic tea, crystals, chanting and any amount of other wu - because all those sites promoting it offered actual products they were providing.

People posted those and comments on how offensive they were as evidence of a negative effect Autism Speaks has had on them and others; you're posting links to a PR machine (as any promotional website must be) claiming good things will happen in response to requests to see some good things that have been done, and that's the only reason why I commented here at all.

It's not the same thing. You're promoting exactly what the web site is designed to promote: a service - not an evidenced, end result.
In the same way that people have made specific, evidenced complaints about the various videos and the whole AS approach to Autism as an answer to the question "So what's wrong with Autism Speaks?", a body of evidence should logically exist to answer the question "What good is Autism Speaks doing?".
Links to their own web site do not answer that.

This ^

ahaha I thinkI get your point. You want to see results within the Autism community, some way that they have made a measurable (is that the right word?) improvement. And it being somebody besides them acknowledging it. I get you now, that does make sense.

The message is to stop this inflammatory advertising. As mentioned John Elder Robinson tried to tell them. There have been plenty of articles and blogs by autistic and interested parties telling them to stop the inflammatory advertising and statements by the wife of the CEO. You can Google these. They have not listened

If you are totally against a cure there is probably nothing they can do to be a positive for you.
I am not anti cure. I am pro choice in the matter. My choice is very likely to be to refuse the cure if it happens. I have seen there website. There are doing really good things. In my opinion they represent a future danger to a person like me because of the inflammatory messages partially and totally cancel out the positive ones.

This thing about The Cure. I'm not sure we have to worry about legislation exactly, not like they're going to pass a law saying all Autistics must take THE CURE. But it's more pernicious then that because your doctor can do it to you without legislation such as that. Think about what they do to schizophrenics and there was no law passed specifically about that. They can just numb a person out if they want. But this issue just isn't about Autism, it's about the coming world of cures for all kinds of things, plus genetics vs. human freedom and personal choice. The deaf community is already going through it. I do find the idea scary and in that regard I'm glad I'm not diagnosed.

If they can pass legislation saying you must have health insurance and what it could contain I don't see why that can't pass legislation. It won't cost as much as calling out the Army, Navy, Air Force and Marines and every member of the National Guard and using every piece of equipment ever made.(last sentence is sarcasm referencing http://www.autismspeaks.org/news/news-i ... all-action)

It's not so much that I think they can't as I don't think it's necessary.

Sorry I don't have much time to be on this thread right now, but there is plenty of interesting material I intend to respond to.

AsPartOfMe, I'm glad you posted this link as I was going to post it here but didn't get around to it yet. This was the straw that broke the camel's back for the one person who resigned from that group. Personally I do not see what is so bad about it. It is over emotional and nothing I would write, but they seem to be doing many services for people,,,actually not just seem to...it is obvious they are. The language is simplistic...they are using hyperbole, presumably partially as a device of fund raising, and the device is probably quite successful from that angle.

I get the point that they are painting autistic people in a kind of negative light and objectifying them. I have gotten that from the beginning as it very easy to see, and that is good to point out. As far as a cure goes, there are different kinds of autism and they seem to be focusing more from one angle I think and now trying to include other angles because of external pressure that has been put on them. Personally I think there are different kinds of autism and it makes it very complex to try to approach by including all people on a spectrum, but this is how it is set up, not only by this organization but also kind of diagnostically---all these different kinds of people are considered autistic because of some similar characteristics, and I don;t think we can change that.

To the person who wrote the message about the solution being for them to change their name, that was a great message. I am intending to respond to that in depth, but for now-- I don't think they will be changing their name. That is the thing---sometimes the way situations are set up and subsequently built upon cannot so easily be changed, as in this instance the public recognizes that name and it has become a trademark.

To Ettina, now that I have posted about the tool kits and you have looked that material over by reading what I wrote and I hope going to the website again, do you see how they are helping people? It is surely obvious. I do not see how you missed this in the beginning when you wrote that you looked there and did not see any way they are helping people. Of course in some ways people can be helping people and in other ways harming them. Sometimes things are not so easy to sort out. That is the problem...actually I think one of the major human dilemmas.

I started this thread not to support Autism Speaks, which I know little about, though now know more, but for enquiry. I think that is the most beneficial approach.For me telling people what I think or think/feel I know is not enough, though for some others it may be enough. I want to learn about myself by observing my own responses as I write here and analyzing my own thinking processes for errors with the help of feedback and input from others.,

I did not enter the Autism Speaks debate until that statement was released in November of 2013. Before that statement I believed a lot of the criticism was dated. The ads as horrible as they were were several years old and nothing nearly that inflammatory had been repeated, and the mother who spoke of killing her daughter in front of her was not with Autism Speaks and John Elder Robinson was. And there was the good things on the website you mentioned. While I was still suspicious and had a very different view of autism then they did there was pretty good circumstantial evidence that they were listening to criticism. It was not only that the original inflammatory rhetoric was repeated but who it came from that convinced me that I was naive to entertain the thought that they had changed.

They are painting Autism in a horrific and I still think Satanic like darkness. That Autistic people are like that is implied.