Offer from Autism Speaks, please give your opinion

Page 12 of 13 [ 197 posts ] Go to page Previous 1 ... 9, 10, 11, 12, 13 Next

Should we work with Autism Speaks to promote positive images of autism?
Poll ended at 16 Apr 2008, 1:47 am

Yes! This isn't about spite. Any chance to get a positive message across is good. (Besides, if they back out now it will prove to everyone how they really feel.)	40%	[ 36 ]
Not sure... (If this is your answer, please explain why in a Reply Post.)	13%	[ 12 ]
No way! We don't want to make them look like they care while they are still working for a "cure". It's more important that people know we disapprove of their policies.	46%	[ 41 ]

Total votes : 89

NicholasGray
Tufted Titmouse

Joined: 23 Jan 2008
Age: 49
Gender: Male
Posts: 47
Location: Phliadelphia

16 Apr 2008, 11:57 am

Oh, and I just want to clarify one thing:

Quote:

Your film could be a moment of discovery for them like Wrong Planet was for me, and many who cite Wiki, as their point of discovery.
...
There are many other places to market your film.
...
Make your film, stay out of politics.

Burn it to DVD, sell it on Wrong Planet.

I don't want this project being confused with the movie I made. If You Could Say It In Words is a feature film. And frankly, the film company I a part of is interested in licensing and/or selling it to as many people as are interested in seeing it. It features an undiagnosed aspie character not to be political, but because I was writing about that feeling of being alone, even when you're surrounded by other people, and about the feeling of lying to yourself about who you are and what you want in order to escape that isolation. But make no mistake, it was made as a commerical venture, no different than if I decided to make a movie about bank robbers or pirates.

The series of video interviews I proposed in this discussion thread is not going to be sold. It is going to be made available for free. This is meant specifically as an awarenss and advocacy campaign. In fact, the same film company that I made If You Could... with met last week to discuss these videos and basically said: "We don't do advocacy campaigns. We are an organization for arts, not politics. We make it a priority not to comment on the politics of the artists we work with, either positively or negatively." They have, however, offered to donate equipment and legal advice for the project once it is set up with a non-profit.

Just wanted to clarify that the movie and the interviews are two completely separate things, with different formats for exhibition, different reasons for existsing, different teams behind them, everything.

polarity
Veteran
Veteran

Joined: 15 Feb 2006
Age: 47
Gender: Female
Posts: 502
Location: PEBKAC

16 Apr 2008, 1:20 pm

I think really we need to show all aspect of what it means to be austistic, from those who've succesfully integrated into NT society, to those who are happy in their own worlds, and even those who are struggling without support.

Someone posted this on another forum on a totally different topic, but I thought it rather fitting (He's a pediatrician):

Quote:

A newborn infant demonstrates a stereotyped behavior repertoire that is smaller than that of your average insect. In essense, every little cute thing an infant two hours old does is simply reflex. I can elicit almost any available behavior from a newborn with a maneuver specific to that behavior. I can make a newborn wiggle his butt, grab my hand, burp, suck and swallow, and even poop. And it will work >98% of the time and the remaining ~2% of infants probably have some neurological pathology.

By the time that infant is two weeks old, he is fixing on peoples' faces.

By the time he is six months old he is cooing, laughing, interacting, and you can begin to see a little human being coming to consciousness.

At about a year he's walking (+/- 2 months).

These milestones are set in stone. A baby who is not walking by 14 months of age is developmentally delayed. The milestones will all come in pretty much the same order for every baby. In that respect, a good deal of human intelligence is inborn, pre-programmed, and hard-wired.

But over the next 17 years, that child will be exposed to a world in which there are rules, expectations, patterns, and probabilities. By age 5 he will speak a language fluently and as a native. If he hasn't learned a given language by age 10-12 he will *never* speak it fluently and as a native, no matter how good at it he gets.

Without those experiences and inputs, however, that stereotyped pattern of development becomes disordered and delayed. Until a certain age, children can recover those milestones, but after a certain degree of developmental deprivation, they are destined to be mentally ret*d, in spite of having been born with a perfectly good brain.

My main reason for voting no, as it no doubt is for many others, is the use of the word cure. I've already made my opinion clear on this, and the above only says the same thing from the point of a professional. Delaying assistance that may help development is the worst thing for autistic people. The sooner they get appropriate help, specific to their condition, the more advanced their development will be.

What I'd like to add is that Autism Speaks are also misleading the parents and others, who do not have a sufficient understanding of what a developmental disorder is to understand how hard it is to change. Giving them false hope and recieving donations based on what is little more than a lie is just wrong.

_________________
You aren't thinking or really existing unless you're willing to risk even your own sanity in the judgment of your existence.

serenity
Veteran
Veteran

Joined: 25 Feb 2007
Age: 46
Gender: Female
Posts: 1,377
Location: Invisibly here

21 Apr 2008, 11:15 am

I would like to apologize for my ranting post a few pages back. I don't know what came over me, I have never exploded on an internet forum before. I took a short break from WP to compose myself. This topic is just very, very close to home for me, so I don't think that I will add anymore to the discussion, because I'm not sure that I can be calm about it. I just wanted to say that I'm sorry. :oops:

(I hope that I haven't interrupted the thread by posting this.)

morning_after
Veteran
Veteran

Joined: 28 Jan 2008
Age: 43
Gender: Male
Posts: 1,041
Location: Arizona

21 Apr 2008, 7:22 pm

serenity wrote:

(I hope that I haven't interrupted the thread by posting this.)

It's okay, serenity, really. We all get a little upset sometimes and need some time away.

_________________
Bill Cosby: Dad is great! Give us the chocolate cake!

santaclautism
Emu Egg
Emu Egg

Joined: 18 Apr 2008
Age: 47
Gender: Male
Posts: 5

22 Apr 2008, 10:58 am

archetype wrote:

When was the last time Autistics crafted subliminal advertising?

I don't know...what time is it, exactly? (Liminal points exist along a spectrum, and differ for each individual.)
This makes it incredibly difficult to define some objective notion of what is and is not "subliminal" for others.

Every time I act, there is some level of calculation involved in that act, either "conscious" or "subconscious".
More rigorously, it's always some combination of the two as they are impossible to separate out completely.
As with everything else, it boils down to balance, not just of intentionality and effect, but consciousness, too.
The same is true for those involved in "marketing" or "advertising", as it is in "producing" and "consuming".
Whether you like it or not - if you participate in the present society or economy, you advertise subliminally.

I would go so far as to say that if you exist, you advertise subliminally. You transmit messages to be read.

Quote:

I do not want any human primate government agencies in my life.
I do not want any human primate corporations in my life.
I do not want any human primate 'machinery' in my life.
I do not want any human primate influence in my life.
I do not want any human primate opinion in my life.
I do not want any human primate government dollars in my life ... nor the unspoken toll that is required for those dollars; I will not enter into that 'agreement' with human primates - I have learned that lesson too many times.

I suspect that you would only be differently unhappy if the phrase "human primate" were replaced by "autistic".

This leaves you (in the same method that you employed with someone else's post above) saying the following:

Quote:

I do not want any ... government agencies in my life.
I do not want any ... corporations in my life.
I do not want any ... 'machinery' in my life.
I do not want any ... influence in my life.
I do not want any ... opinion in my life.
I do not want any ... government dollars in my life ... nor the unspoken toll that is required for those dollars; I will not enter into that 'agreement' with (anyone) - I have learned that lesson too many times.

This does not strike me as a realistically tenable position. Please understand that I am not trying to be mean.
You close this thought with the underlying cause, the justification deriving from negative personal experience.
Your personal experience is not universal. Your focus, however, is universal - but maybe should be personal?

I wish you well.

NicholasGray
Tufted Titmouse

Joined: 23 Jan 2008
Age: 49
Gender: Male
Posts: 47
Location: Phliadelphia

28 Apr 2008, 2:29 pm

Hello all.

Just thought I'd share some updates on this whole topic.

First, I met this week with two advisors in non-prfit organization and fund-raising about helping me put this whole thing together. After reading everyone's concerns, I wanted to make sure to do these completely outside of AutismSpeaks's purview. We had a long dinner and talked about the specifics of getting some rcognizable names on-board and for how to get some attention to them on a national level.

Second, amusingly enough, I called the office of Special Projects at AutismSpeaks to follow up with them about issues such as "no right to re-edit" etc. The lady didn't call me back. A week later I called again. No response. I made a third call. Still nothing. I am going to try again by email this week.

I suppose she might just be very busy, but it looks more and more like the offer was completely insincere. I wonder what the best way to make THAT fact known might be...?

polarity
Veteran
Veteran

Joined: 15 Feb 2006
Age: 47
Gender: Female
Posts: 502
Location: PEBKAC

28 Apr 2008, 3:24 pm

A follow-up in the youtube comments to the video might be a good start, if they're still unwilling to follow up on it aftyer being informed of your intention to make their insincerity public.

_________________
You aren't thinking or really existing unless you're willing to risk even your own sanity in the judgment of your existence.

MysteryFan3
Veteran
Veteran

Joined: 8 Jun 2007
Age: 68
Gender: Male
Posts: 1,156
Location: Indiana

28 Apr 2008, 4:22 pm

Not entirely unexpected. Her offer was made in a standard "business pretty" delivery. It's hard to tell if someone is sincere when they do that. Most often, they're just shifting the next step to someone else.

Still, they may actually follow though. Having poor organizational skills is not restricted to Aspies.

_________________
To eliminate poverty, you have to eliminate at least three things: time, the bell curve and the Pauli Exclusion Principle. Have fun.

krex
Veteran
Veteran

Joined: 20 Jun 2006
Age: 61
Gender: Non-binary
Posts: 4,471
Location: Minnesota

28 Apr 2008, 8:23 pm

Autism Speaks offer....Could you legally show a clip of her making the offer, (as shown in the meeting)? I did have my suspicions that the comment she made was "off the cuff" and not sincere but meant to present them as "reasonable". I was hoping I was wrong, regardless of how rare that is :wink:

"Autism Speaks is so busy speaking for us, that they don't seem to have time to listen"...would make a good sound bite following the clip of her making the offer and your documented,(always keep a written record of when you call and what their response...or lack of one... was), attempts to contact them for follow-up.

I can't recall if I mentioned this before but if you are still looking for suggestions about your film for this....I would like the point to be made that....

1)There are new technologies that are allowing "non-speaking autistics" to communicate and prove themselves to be thinking, feeling and caring individuals...something that some did no realize until they were given a voice by technology...(thinking of Amanda Brags(sp?).

2)There is a lot of credit being given to various "treatments"...ABA and others...that are given credit for the improvement of autistics kids functioning that could be accounted for by nothing more then "time". Point being....I consider myself developmentally delayed and even without ABA, I improved in some areas over time and life experience. Scientist could learn a lot more about how this happens (what helps and what hinders), if they would spend more time "studying" aspies who were raised before there was a DX. The fact that many are ignoring the reality of their(our) existence is perpetuating the agenda that this is a "new epidemic", rather than the reality that we ave always been here.

_________________
Just because one plane is flying out of formation, doesn't mean the formation is on course....R.D.Lang

Visit my wool sculpture blog
http://eyesoftime.blogspot.com/

CockneyRebel
Veteran
Veteran

Joined: 17 Jul 2004
Age: 50
Gender: Male
Posts: 117,654
Location: In my little Olympic World of peace and love

29 Apr 2008, 6:58 am

I've tried to sign it, again but they only take one signature per person, now.

_________________
The Family Enigma

NicholasGray
Tufted Titmouse

Joined: 23 Jan 2008
Age: 49
Gender: Male
Posts: 47
Location: Phliadelphia

01 May 2008, 2:10 pm

Hey all.

Yesterday I received a call from Autism Speaks' Director of Special Programs. Apparently there were some snafus with their blackberry devices and international travel, so they just got my messages. Or maybe some our grousing got back to them, who knows.

But they are going to make good on their offer to create web space to host the videos (meeting next week about how/where on their site) and at least sound genuinely enthused to expand upon the messages they are putting out. I am cautiously optimistic right now.

When I talk with them next week, I will bring up all the concerns you guys have expressed to me before moving forward. And I will make sure to keep everyone on this board in the loop.

Nicholas

krex
Veteran
Veteran

Joined: 20 Jun 2006
Age: 61
Gender: Non-binary
Posts: 4,471
Location: Minnesota

01 May 2008, 5:45 pm

_________________
Just because one plane is flying out of formation, doesn't mean the formation is on course....R.D.Lang

Visit my wool sculpture blog
http://eyesoftime.blogspot.com/

auntyjack
Sea Gull

Joined: 2 Feb 2006
Age: 74
Gender: Female
Posts: 217

03 May 2008, 3:20 am

NicholasGray wrote:

Suzanne Wright, the co-counder of Autism Speaks, responded with a public offer to promote positive stories on Autism Speaks' website if I provide them to her. This was, of course, right after she claimed her orgainzation is making a ton of progress to make autistics feel more accepted. She then promptly compared autistics to AIDS patients.

..
Nicholas

The only way that I would support Autism Speaks would be if they were to reform their management team to include 50% autistic representation. I would then expect them to rework their website with regard to an evaluation by the autistic board members. I would expect them to insist that all research funded by them be subject to a member of the autism committee on the review team so that only proposals which meet an autism friendly protocol be funded. I suggest that fundraising no longer be promoted in a manner which demeans autistic people as damaged beings in need of fixing.

I suggest that as they clearly demonstrate a limited understanding of autism (the comment about Aids shows that) that autistic adults should boycott the organization until they are prepared to accept us as equals.

auntyjack
Sea Gull

Joined: 2 Feb 2006
Age: 74
Gender: Female
Posts: 217

03 May 2008, 3:24 am

The_Cucumber wrote:

Well, I suppose we could if we do it right.

Simply showing someone why they are wrong without actually saying "your wrong" can be far more effective then telling people they are wrong and backing up your argument.

So I think we should send them as many success stories of people with autism as we can. Preferably, it can be inferred that if the person did not have autism they could not have succeeded in the way they did.

If we send them materials to use on their site, we are supporting them. We give them validity. By our actions we say that they are ok.

The best thing that we can do is to refuse to support Autism Speaks until they accept us on our terms and let the world know that we do not support them and why.

Speckles
Toucan
Toucan

Joined: 2 May 2008
Gender: Female
Posts: 280

03 May 2008, 10:57 pm

I say yes. No progress can be made without communication and compromise.

autistican_beauty
Tufted Titmouse

Joined: 20 Apr 2008
Age: 45
Gender: Female
Posts: 34
Location: Between a rock and a hard place

04 May 2008, 2:59 am

Quote:

I say yes. No progress can be made without communication and compromise.

I will extend Speckles words to my opinion. If we as Aspies and NT's are EVER going to come together, it must be done with respect. The anger and attacks have to stop. We have to be better than politicians. Nobody likes getting slapped across the face Aspie to Aspie, Aspie to NT, NT to NT, etc...if a system doesn't work after employing this simple but all-too-forgotten strategy, then cut it off like a limb with gangrene. Hate isn't healthy. I'm so disheartened to see the way it spreads like wildfire on social networking sites. I sent AS a poem for their World Autism Day writing contest. I did it in the hopes of enhancing adult awareness, an issue I find greatly ignored and lacking in terms of support and services. They did choose to publish it. I was glad because I achieved my goal and yes, it was good to see my work in print again after several years. My point is, let's agree to disagree, be respectful and work with the Wrights and AS. If they choose to cooperate, a gain for all. If not, we as the autism community cut our losses and move on.

_________________
D. Plainview

I DRINK YOUR MILKSHAKE!! !! !! !!

Page 12 of 13 [ 197 posts ] Go to page Previous 1 ... 9, 10, 11, 12, 13 Next

Jump to:

Offer from Autism Speaks, please give your opinion Post Reply New Topic

Offer from Autism Speaks, please give your opinion