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| Should we work with Autism Speaks to promote positive images of autism? |
| 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.) |
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40% |
[ 36 ] |
| Not sure... (If this is your answer, please explain why in a Reply Post.) |
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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. |
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46% |
[ 41 ] |
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| Total Votes : 89 |
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Smelena
Cure Neurotypicals Now!
Joined: Apr 02, 2007
Posts: 2150
Location: Australia
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 Posted: Sun Apr 06, 2008 9:07 am Post subject: |
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Flood them with positive stories please .... from everyone .... Aspies/Auties, friends, co-workers, parents etc
Also, is there any data out there beyond the 1 in 150? For example what is the breakdown of the 1 in 150 in terms of Autism vs Asperger's vs PDD-NOS
If only a small portion are LFA then shouldn't their advertising mirror the reality?
Helen
P.S. I think it's ironic that people with Autism are supposed to be the rigid thinkers! Seems to me that some from Autism Speaks are extraordinarily rigid in their view points!
_________________
To see my family and my advocacy efforts: http://au.youtube.com/watch?v=JR03uSFQf6Y and http://au.youtube.com/watch?v=7-ZBxFYFvuA |
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olle
Snowy Owl
Joined: Mar 03, 2008
Posts: 157
Location: Europe
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| Posted: Sun Apr 06, 2008 9:16 am Post subject: |
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Yes, we should do this. This is an excellent opportunity to have some influence, and to give the positive side of autism, that's so often not mentioned.
(We should not speculate about historical or living persons and their supposed ASD. I'm talking about people like Albert Einstein and Bill Gates. Speculating will make us look desperate, as if we couldn't find success stories in real life, and the stories will not be reliable. )
But I'm a little bit confused though. What kind of stories? Is it interviews, articles, or what? And what kind of people? Famous ASD cases, or the random person, or what? |
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Orwell
Outer Party Member
Joined: Aug 09, 2007
Age: 20
Posts: 8369
Location: Room 101
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| Posted: Sun Apr 06, 2008 9:19 am Post subject: |
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Hey, we're not exactly in the position to be a major public presence, so we should take these opportunities where we can, while also making it clear that we are not to be pities or compared to AIDS patients.
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WAR IS PEACE
FREEDOM IS SLAVERY
IGNORANCE IS STRENGTH |
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sartresue
Radical Aspergian
Joined: Dec 19, 2007
Posts: 4601
Location: The Castle of Shock and Awe-tism
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| Posted: Sun Apr 06, 2008 9:52 am Post subject: Re: Offer from Autism Speaks, please give your opinion |
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| NicholasGray wrote: | Hi everyone.
I'm Nicholas. Some of you may have read and/or listened to the interview Alex did with Alvin Keith and myself about our movie If You Could Say It In Words.
I went with Alex's group to the UN discussion on autiusm awareness this week. I got the chance to ask the panel a question and decided to address the way autistics are potrayed in major advocacy campaigns (especially by Autism Speaks). I suggested that too much time is being devoted to showing the worst moments in autie's lives while none was being spent on celebrating your achievements. I believe this contibutes to a message of pity and fear; it furthers the misconception of auties as damaged/diseased.
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.
...sigh...
Still, they have all the money. They have all the corporate partnerships. They have the most influential lobbyists. They have the best machinery in place to influence public opinion and the use of government dollars. If there is a chance to get them to take up the right side of this issue for a change, even if its due to nothing more than public pressure, I feel like we should seize it. Helping to steer their organizatoin, with all its capabilities, in the right direction has to be better than going to war with them, right?
But I would like to get feedback from the folks here at wrongplanet on how you feel about it.
Thanks
Nicholas |
The Devil and the Developer topic
After reading the other members' posts, I think there must be a lot of negotiations and legalities sorted out before the Wrong Planet dallies with Autism Spooks.
What does Alex have to say? He is the Founder and Developer of wrongplanet.net. (I still think he paid too much [$80 million] to acquire that site!   )
_________________
Radical Aspergian
Awe-Tistic Whirlwind
Phuture Phounder of the Philosophy Phactory |
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alex
Developer
Joined: Jun 14, 2004
Age: 23
Posts: 6492
Location: DC Metro Area (No. VA)
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| Posted: Sun Apr 06, 2008 10:05 am Post subject: |
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| I was also at the UN meeting and Suzanne Wright did seem to be open to the possibility of putting positive stories on the site. Although the "positive" stories they showed to the UN were pretty negative. |
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LeKiwi
Phoenix
Joined: Nov 27, 2007
Posts: 2651
Location: The murky waters of my mind...
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| Posted: Sun Apr 06, 2008 10:06 am Post subject: |
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How did she compare ASDs to AIDS victims?!
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We are a fever, we are a fever, we ain't born typical...
New Blog: http://onelittleaspergian.blogspot.com/ |
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Zarathustra
Phoenix
Joined: Oct 06, 2007
Age: 102
Posts: 575
Location: In orbit
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| Posted: Sun Apr 06, 2008 11:47 am Post subject: |
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Unfortunately AutSpks is here and isn't going to go away. They will condesend to give us a platform, while carrying on regardless. Their portrail of autism is skewed and in some places, blatantly false, and they are fundamentally anti-autism. I won't be AutSqueeks pet monkey, rolled out at parties to show the in-laws just how well they've trained me. I don't think you should either. By all means flood them with positivity but found your own mainstream organization and get Alex to have a meeting with Gates for funding... The sooner Das Ubergeek comes out the better.
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"No matter what the facts are, only the Truth matters" |
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NicholasGray
Tufted Titmouse
Joined: Jan 24, 2008
Posts: 46
Location: Phliadelphia
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| Posted: Sun Apr 06, 2008 3:04 pm Post subject: A couple answers to your questions |
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Thank you everyone for the feedback. I hope it keeps coming.
Some people asked about:
1. What was the AIDS patient comparison?
She was referencing my question about a "stigma against autistics" that was being worsened by their ad campaign. Her answer was that Autism Speaks was working hard to remove the stigma through their awareness campaign and that she thought "it's going very well" because "once awareness filters down through our society at all levels, the stigma takes away" (sic). But then she said the Ad Council had never taken on a campaign for "a disease" before, and that "you can well remember the stigma that we had with AIDS... that was a milestone to get over that stigma and I think it's just a matter of time." I believe she meant well by it, but it did reveal pretty clearly the way she sees things currently. I hope I didn't make it sound like something worse than it was.
2. What would I submit to them?
I'm open to suggestions from anyone. My only fixed goal is to find stories that help the parents and people at Autism Speaks -- or any NTs anywhere -- to start seeing a shared human condition. I want to keep as a motto for my team "Atypical, not abnormal." Instead of seeing autistics as "broken" I want to help NTs see how the experience of living can be the same, even if the life lived is very different.
I was thinking short video interviews with auties who are, for lack of a better phrase, well-adjusted in their lives now. Maybe they live independently and have a family of their own now. Maybe some who still require a level of supervision and care, but have found some success in a career. People who have made great contributions to our world because of their autism. And especially, people who were lower functioning as children but who are now thriving. It is critical that the folks at Autism Speaks start to understand that these people are not "cured". Their autism didn't "go away". They learned to embrace it, and others around them learned to accept instead of trying to change.
Alison Singer wrote an article not long ago saying that she didn't see how aspies and autistics could even be categorized together. They don't look at all alike to her. I'm sure there are many many parents out there, who have the same misgivings and are developing the same horrible prejudices she has. It would be great to reach out to those people and help them see that LFA and HFA are not mutually exclusive conditions, but shades of the same condition. Maybe we can help them learn the truth before Mrs. Singer gets her propaganda hooks into them.
Those are the kind of stories I would like to get out there. |
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Smelena
Cure Neurotypicals Now!
Joined: Apr 02, 2007
Posts: 2150
Location: Australia
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| Posted: Sun Apr 06, 2008 4:44 pm Post subject: |
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I have 3 sons aged 9, 8 and 4. My older 2 have Asperger's. I love and enjoy all 3 of my sons.
The biggest difficulties I encounter comes from lack of acceptance in the wider community, lack of adequate support, and lack of understanding by medical professionals and teachers.
My sons are aware that there is poor understanding about Autism / Asperger's in the community.
However I am very scared about when they start hearing Autism Speaks messages. We are always working to build their self-esteem, but I am scared about when they start seeing/hearing these negative advertisements.
With regards low-functioning/non-verbal autistics. Nobody knows exactly how much they understand. But they are not deaf! I'm am sure that the negative messages get through and would be a huge barrier to their function/anxiety/depression etc.
Apart from Autism Speaks hearing from a range of Auties/Aspies, I think they need to be aware of the level of heartache and despair their negativity causes.
My Aspie sons don't cause me despair. I think they're amazing and I have learned so much from there. What causes me despair is the negative media portrayals and difficulty accessing appropriate support for them.
There is a posautive youtube group. Here are a bunch of videos by individuals with autism/asperger's and their parents.
http://youtube.com/results?search_query=Posautive+Youtube+group+&search_type=
| Quote: | | I was thinking short video interviews with auties who are, for lack of a better phrase, well-adjusted in their lives now. Maybe they live independently and have a family of their own now. Maybe some who still require a level of supervision and care, but have found some success in a career. People who have made great contributions to our world because of their autism. And especially, people who were lower functioning as children but who are now thriving. |
One of my heroes is CockneyRebel. I don't believe she earns a wage. However her unpaid work is invaluable. CockneyRebel mentored me and my sons when we first joined WrongPlanet.
CockneyRebel is a great friend. Look around WrongPlanet and you will find she is there encouraging and supporting her friends through difficult times. She also has a wicked sense of humour.
If you want to see what a great community WrongPlanet is, and see what great people many Auties/Aspies are, please read some posts by my sons:
1. This one is by my second son soon after he was diagnosed. He was going through a period of extreme anxiety and was attending an Asperger's Clinic 1/week and only going to school 4 days per week. He made this post and we were overwhelmed by incredible kindness, mentoring and support given by members. We printed out this thread and my son looked at it a few times per day for weeks. Free therapy! http://www.wrongplanet.net/postt31775.html
2. This thread is by my older son who was diagnosed after his little brother. The first thing he did when we told him was go to WrongPlanet. Please read the support he was given. It was invaluable to helping him accept himself. http://www.wrongplanet.net/postt34890.html
These are only 2 examples of support and mentoring that goes on at WrongPlanet.
Yes there are arguments. But there are arguments in any community.
HElen
_________________
To see my family and my advocacy efforts: http://au.youtube.com/watch?v=JR03uSFQf6Y and http://au.youtube.com/watch?v=7-ZBxFYFvuA |
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NewportBeachDude
Deinonychus
Joined: Dec 25, 2007
Posts: 355
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| Posted: Sun Apr 06, 2008 6:04 pm Post subject: Re: Offer from Autism Speaks, please give your opinion |
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| NicholasGray wrote: | Hi everyone.
I'm Nicholas. Some of you may have read and/or listened to the interview Alex did with Alvin Keith and myself about our movie If You Could Say It In Words.
I went with Alex's group to the UN discussion on autiusm awareness this week. I got the chance to ask the panel a question and decided to address the way autistics are potrayed in major advocacy campaigns (especially by Autism Speaks). I suggested that too much time is being devoted to showing the worst moments in autie's lives while none was being spent on celebrating your achievements. I believe this contibutes to a message of pity and fear; it furthers the misconception of auties as damaged/diseased.
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.
...sigh...
Still, they have all the money. They have all the corporate partnerships. They have the most influential lobbyists. They have the best machinery in place to influence public opinion and the use of government dollars. If there is a chance to get them to take up the right side of this issue for a change, even if its due to nothing more than public pressure, I feel like we should seize it. Helping to steer their organizatoin, with all its capabilities, in the right direction has to be better than going to war with them, right?
But I would like to get feedback from the folks here at wrongplanet on how you feel about it.
Thanks
Nicholas |
You should take her up on her offer. Here's why:
Since I've been on WP, there's countless threads every week with anger/hate in them about Autism Speaks. You'd think folks didn't have anything better to talk about. Be it as it may, if this community really hates the images they see in the media, take Mrs. Wright up on her offer and work with her to change them. Instead of bashing her organization, form an alliance and partner with them to show the world what Aspergers is all about. If anybody can do it, you and Alex can because she strike me as being very intelligent.
However, it's got to be clear that there are many faces of Autism. There are people like Wrong Planet who are functional, Aspergers and able-bodied. Then, you have the mid-to-lower range of Autism where life is very debilitating. That's got to be clear because the public cannot lose sight of the spectrum and those who need help the most. Many people here may not need the services my kid gets, but I don't want some high-functioning dude with a job saying "Autism is okay," and the world not realizing that there are many like us who need the services in order to get our kids to the point where they can be just as functional as everyone else.
In putting yourselves out there, please make sure the world doesn't get the impression that everybody with Autism is high-functioning. Because if that happens, we're back to square one. All the services end and so does respect, advocacy and acknowledgement.
Last edited by NewportBeachDude on Sun Apr 06, 2008 6:20 pm; edited 1 time in total |
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Lene
Phoenix
Joined: Nov 28, 2007
Age: 24
Posts: 833
Location: Manchester
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| Posted: Sun Apr 06, 2008 6:11 pm Post subject: |
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In the context, the comparison between autism and AIDS isn't that bad- it sounds like she just meant that both are incureable and subject to bad press.
Shame she didn't mention that much of the bad press for autism was caused by her foundation!
There are a few similarities between HIV and autism, but by comparing the two, she inadevertently casts autism in an extremely bad light- why couldn't she have chosen another chronic disability? One where people have learnt to live with their differences and portray themselves in a more positive light, for example the deaf community. By associating autism with an incureable fatal viral infection, (one often associated with a search for a cure) she has compounded the belief that autism is horrific and must be eradicated at all costs. Surely highlighting the differences between autism and deadly diseases such as HIV would be a better step towards acceptance?
edit: I voted 'no' in the poll, but I'm kind of changing my mind- I read the person aboves post and it has several good points |
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sinsboldly
Free Range Aspie
Joined: Nov 22, 2006
Age: 59
Posts: 13216
Location: Oregon, USA
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| Posted: Sun Apr 06, 2008 7:08 pm Post subject: |
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| Fuzzy wrote: | | Hopefully Alex will never take money from them. once people give you money, they start telling you what to do. |
wait a minute, Fuzzy dear. I have contributed to WP and I don't get to tell them what to do!
Merle |
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morning_after
Phoenix
Joined: Jan 29, 2008
Age: 28
Posts: 1041
Location: Arizona
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| Posted: Sun Apr 06, 2008 8:24 pm Post subject: |
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I would be all for it, but I am hesitent to say yes.
The reason is that I don't want to come off as if I support their videos and the other stuff they put out.
I think that if we do it, we have to have them agree to saying that we are not in favor of a cure and ask to be respected as we are.
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Bill Cosby: Dad is great! Give us the chocolate cake!
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cosmiccat
Queen of the Zombies
Joined: Apr 06, 2007
Posts: 2331
Location: In my body on my 67th trip around the sun
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| Posted: Sun Apr 06, 2008 8:37 pm Post subject: |
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Keep your friends close and your enemies closer.
It is better to have a camel inside the tent peeing out than outside the tent peeing in.
Proceed with caution.
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" Has 9 lives and intergalactic travel capabilities but is a sucker for tuna on wheat" Apollo 13
First they ignore you, then they laugh at you, then they fight you, then you win.
Mahatma Gandhi (1869-1948)
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Apuleyo
Pileated woodpecker
Joined: Mar 28, 2007
Age: 20
Posts: 194
Location: Argentina
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| Posted: Sun Apr 06, 2008 9:59 pm Post subject: |
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I didn't read all the comments, sorry, but, where do I have to send my history then? Because after a lot of struggle in my teen years now I am happy, have a girlfriend, attend college, everything is good to me now.
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