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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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serenity
Phoenix
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Joined: Feb 26, 2007
Age: 30
Posts: 1254
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 Posted: Sun Apr 06, 2008 10:00 pm Post subject: |
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The only way that I can see something like this to be an approach that I can personally accept is if all of the spectrum is appreciated, not just those that are high functioning. All people have value, because they're human, not just becuase they earn a paycheck, or can raise a family, or even speak. If that's the kind of autism awareness that's going to come out this, then leave me out of it. I have a son on the spectrum that will probably live on his own, and hold a job as an adult, I also have one that probably won't do either of those things, or possibly speak. I accept them both just as they are, and I am working hard trying to get society to, too. Can you take a wild guess at which one's future I fear for the most? I'm getting kinda sick of this whole AS haughtiness toward LFA. It's like saying "society should accept us, and not expect us to change, but the ones on the lower end of the spectrum need to change for society." I don't understand this logic.
I'm so mad right now, that I don't even know if I'm making sense, so I need to go calm down for a bit. |
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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 11:23 pm Post subject: |
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And I just learned to be happy as I am. I do not want to be cured and do not want to support anyone that tries to cure me.
That said, I do think I would like to send them my first blog post from here.
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Bill Cosby: Dad is great! Give us the chocolate cake!
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nannarob
Phoenix
Joined: Apr 14, 2007
Posts: 1349
Location: Queensland
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| Posted: Sun Apr 06, 2008 11:26 pm Post subject: |
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My reaction is emotional and I am afraid to be closely aligned with Autism Speaks. I have seen such negative videos of LFA and on other sites I have seen such positive videos of individuals who are also low functioning.
Anyone who denies a human the respect that they are due does not have my vote.
Sometimes I am glad to be wrong and this is one of the times. I wish you well if you go forward with this plan to work toghether with this group to promote a positive image.
Robyn
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NEVER EVER GIVE UP
I think there must be some chronic learning disability that is so prevalent among NT's that it goes unnoticed by the "experts". Krex
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EvilKimEvil
zoo-music girl
Joined: Sep 27, 2007
Posts: 3041
Location: highway to hell
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| Posted: Sun Apr 06, 2008 11:34 pm Post subject: |
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I don't know . . . .
If any changes that would benefit autistics could come about through a joint effort between us and Autism Speaks, then it could be a good thing.
But I'm naturally suspicious. I think there is a lot that could go wrong too. And I would have to question their motivations.
What if they wanted to work with us only to improve their own image, combat recent critical publicity, and increase donations? What if they simply incorporated the idea of working with us into their ad campaigns and did very little with us in reality? We could end up being seriously taken advantage of and when we spoke out against this, people would just say, "But aren't you affiliated with them?" Yes, it could go terribly wrong in more ways than one.
We'd have to thoroughly assess the potential risks, potential benefits, and the approximate likelihood of each scenario.
Good question. |
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NicholasGray
Tufted Titmouse
Joined: Jan 24, 2008
Posts: 46
Location: Phliadelphia
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| Posted: Mon Apr 07, 2008 12:34 am Post subject: wow, great points from everyone. |
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Hi again, everyone. Thanks again for all the insight. There's lots of stuff here I wasn't thinking much about. That's one reason why I thought it important to get your feedback before moving forward.
A couple things I wanted to respond to:
Serenity
| Quote: | | The only way that I can see something like this to be an approach that I can personally accept is if all of the spectrum is appreciated, not just those that are high functioning. All people have value, because they're human, not just becuase they earn a paycheck, or can raise a family, or even speak. If that's the kind of autism awareness that's going to come out this, then leave me out of it. |
That is a really important point. Thank you for bringing it up. I will make it a priority to feature LFAs as well as HFA and AS. I had not consciously meant to exclude half of the spectrum in my proposal! It is particularly important that I don't lose sight of this given the way LFAs have been portrayed as "burdens" in the Autism Speaks videos. And you're right, I can't very well help to fight that image if I only interview people from the other end of the spectrum.
EvilKimEvil
| Quote: | | What if they wanted to work with us only to improve their own image, combat recent critical publicity, and increase donations? What if they simply incorporated the idea of working with us into their ad campaigns and did very little with us in reality? We could end up being seriously taken advantage of and when we spoke out against this, people would just say, "But aren't you affiliated with them?" |
I don't think any submissions I might send them would come from Wrong Planet, or any other group. They would just come from me as a "concerned citizen". I don't carry any official affiliation. I sought the opinions and feedback here because I felt it was important to see make sure I addressed the concerns of the group I am fighting with. This would not make Wrong Planet and Autism Speaks partners in any form.
Might it soften their image to have more posautive elements? Maybe. But if they start promoting a posautive image, shouldn't they get some good feedback for that? It might help them want to do more of it.
And on the flip side, if they make an offer to host posautive stories and no one sends them any, won't they use that to help prove "what a terrible affliction this is" and all the other nonsense they have been spouting?
Thanks again everyone for keeping me aware of what to do, what to not do, and what to watch out for. Please, keep it coming.
Nicholas |
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morning_after
Phoenix
Joined: Jan 29, 2008
Age: 28
Posts: 1041
Location: Arizona
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| Posted: Mon Apr 07, 2008 12:39 am Post subject: |
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| nannarob wrote: | My reaction is emotional and I am afraid to be closely aligned with Autism Speaks. I have seen such negative videos of LFA and on other sites I have seen such positive videos of individuals who are also low functioning.
Anyone who denies a human the respect that they are due does not have my vote.
Sometimes I am glad to be wrong and this is one of the times. I wish you well if you go forward with this plan to work toghether with this group to promote a positive image.
Robyn |
That's the only thing I don't like. So much of their stuff is derogatory.
I still would like to send them my post, anyway. If nothing else, it will show AS people CAN have a sense of humor.
_________________
Bill Cosby: Dad is great! Give us the chocolate cake!
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MJIthewriter
Sea Gull
Joined: Mar 19, 2008
Age: 26
Posts: 207
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| Posted: Mon Apr 07, 2008 1:42 am Post subject: |
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I vote yes, because I believe the best form of protest and activism is done through nonviolence (in this case non flaming).
Regardless of viewpoint, we are all in this together as humans. I've lurked their forums and at first I was appalled by their viewpoints. It would be quick to just judge based on personal values. As I browsed their topics and forum posts, I realized these parents are crying for help. They need a kind sympathetic, understanding voice to tell, them hope is not lost. Autism is not a debilitating disease. After all many of these parents have read many negative articles.
I was googling up and this came with ease:
http://news.bbc.co.uk/1/hi/health/3067149.stm
or they find something like this:
http://www.jonathans-stories.com/Non-fiction/Neurodiv.html
Or this:
http://tinyurl.com/4ffcyh
or whatever else google drags up.
Someone who just had their child diagnosed comes across such rubbish and what are they left to think?
These parents are crying. They need support. They need us even if they don't show it. But they need us to talk about both our strengths and weaknesses. They need us to be brutally honest with ourselves (which I don't think is a problem here). They need to hear the good and bad. The realistic and the hopeful. |
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Smelena
Cure Neurotypicals Now!
Joined: Apr 02, 2007
Posts: 2150
Location: Australia
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| Posted: Mon Apr 07, 2008 2:45 am Post subject: |
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| MJIthewriter wrote: |
These parents are crying. They need support. They need us even if they don't show it. But they need us to talk about both our strengths and weaknesses. They need us to be brutally honest with ourselves (which I don't think is a problem here). They need to hear the good and bad. The realistic and the hopeful. |
Absolutely MJIthewriter.
When I first joined WrongPlanet 1 year ago I was depressed and vulnerable. I was scared about the future of my son who had just been diagnosed. A few weeks later another son was diagnosed. And now I'm quite sure my 3rd son also is Aspie (haven't got around to getting him diagnosed yet).
Thank goodness I joined WrongPlanet. I was blown away by the intelligence, warmth and nuturing of the adult Aspies/Auties on this website. Talking with these adults has contributed significantly to my recovery from depression.
Things were going well. Then in January I had a 3 week holiday in Europe. I met 8 other adult Aspies in London. 7 on one day, then 1 on the next day.
These meetings were highly emotional and moving for me. I don't think the people I met in London will ever realise what a tremendous turning point this was for me.
I got to hang out with a group of quirky, witty, intelligent, fun and humerous group of adults. I felt like I was extremely privledged. They were so open about their lives and gave me heaps of good advice (which I sought) and ideas for my sons.
I just wish the parents on Autism Speaks could have the same experiences.
I'm not a psychologist but it seems that the Mum's in the Autism Everyday film (or whatever it was called) were depressed. Were they exploited? I don't know. I think their children were, but I suspect the Mums may have been as well.
Depression in Mum's is huge. It is not the children that cause the depression (in my case). It is the feeling of lonliness, isolation, constantly being judged and fear that you cannot do the best for your children.
When I first joined WrongPLanet I was vulnerable. Who knows how I would have ended up if I had joined Autism Speaks first and been swept away by all the negativity and despair.
So MJIthewriter you are absolutely right. The parents do need you!
From a neurotypical Mum
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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EvilKimEvil
zoo-music girl
Joined: Sep 27, 2007
Posts: 3041
Location: highway to hell
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| Posted: Mon Apr 07, 2008 3:10 am Post subject: |
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| MJIthewriter wrote: | I vote yes, because I believe the best form of protest and activism is done through nonviolence (in this case non flaming).
Regardless of viewpoint, we are all in this together as humans. I've lurked their forums and at first I was appalled by their viewpoints. It would be quick to just judge based on personal values. As I browsed their topics and forum posts, I realized these parents are crying for help. They need a kind sympathetic, understanding voice to tell, them hope is not lost. Autism is not a debilitating disease. After all many of these parents have read many negative articles.
I was googling up and this came with ease:
http://news.bbc.co.uk/1/hi/health/3067149.stm
or they find something like this:
http://www.jonathans-stories.com/Non-fiction/Neurodiv.html
Or this:
http://tinyurl.com/4ffcyh
or whatever else google drags up.
Someone who just had their child diagnosed comes across such rubbish and what are they left to think?
These parents are crying. They need support. They need us even if they don't show it. But they need us to talk about both our strengths and weaknesses. They need us to be brutally honest with ourselves (which I don't think is a problem here). They need to hear the good and bad. The realistic and the hopeful. |
I agree with this, but I voted "not sure" because I'm not sure that Autism Speaks would be a good organization to work with. I'm concerned about the techniques they tend to use to solicit donations and the ways in which they spend their money. They come across as a bit sketchy, based on what I've read about them. This does not necessarily have anything to do with the opinions they espouse.
I'm also concerned by their history of refusing to involve autistic people in their organization. I would have to ask, "Are they really ready to involve us or would the involvement be of a superficial nature?"
If it could be done successfully, I think that working with people whose opinions differ from our own could be immensely beneficial. It would be good to present multiple sides of the ASD story in one place so that parents could form their own opinions without being bombarded by a single perspective and the culture created within a group of people who share the same views.
That said, I have to wonder if it could ever be done successfully. In any group, there tends to be a dominant perspective and one or more minority perspectives that are considered "controversial" or deviant, and hence of lesser import. |
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alex
Developer
Joined: Jun 14, 2004
Age: 23
Posts: 6492
Location: DC Metro Area (No. VA)
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morning_after
Phoenix
Joined: Jan 29, 2008
Age: 28
Posts: 1041
Location: Arizona
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| Posted: Mon Apr 07, 2008 9:58 pm Post subject: |
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| Smelena wrote: | | MJIthewriter wrote: |
These parents are crying. They need support. They need us even if they don't show it. But they need us to talk about both our strengths and weaknesses. They need us to be brutally honest with ourselves (which I don't think is a problem here). They need to hear the good and bad. The realistic and the hopeful. |
Absolutely MJIthewriter.
When I first joined WrongPlanet 1 year ago I was depressed and vulnerable. I was scared about the future of my son who had just been diagnosed. A few weeks later another son was diagnosed. And now I'm quite sure my 3rd son also is Aspie (haven't got around to getting him diagnosed yet).
Thank goodness I joined WrongPlanet. I was blown away by the intelligence, warmth and nuturing of the adult Aspies/Auties on this website. Talking with these adults has contributed significantly to my recovery from depression.
Things were going well. Then in January I had a 3 week holiday in Europe. I met 8 other adult Aspies in London. 7 on one day, then 1 on the next day.
These meetings were highly emotional and moving for me. I don't think the people I met in London will ever realise what a tremendous turning point this was for me.
I got to hang out with a group of quirky, witty, intelligent, fun and humerous group of adults. I felt like I was extremely privledged. They were so open about their lives and gave me heaps of good advice (which I sought) and ideas for my sons.
I just wish the parents on Autism Speaks could have the same experiences.
I'm not a psychologist but it seems that the Mum's in the Autism Everyday film (or whatever it was called) were depressed. Were they exploited? I don't know. I think their children were, but I suspect the Mums may have been as well.
Depression in Mum's is huge. It is not the children that cause the depression (in my case). It is the feeling of lonliness, isolation, constantly being judged and fear that you cannot do the best for your children.
When I first joined WrongPLanet I was vulnerable. Who knows how I would have ended up if I had joined Autism Speaks first and been swept away by all the negativity and despair.
So MJIthewriter you are absolutely right. The parents do need you!
From a neurotypical Mum
Helen |
Helen, I agree, but the question remains of whether or not they will exploit us.
However, I have decided it still needs to be done, if for no other reason than to reach the people at AS.
_________________
Bill Cosby: Dad is great! Give us the chocolate cake!
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morning_after
Phoenix
Joined: Jan 29, 2008
Age: 28
Posts: 1041
Location: Arizona
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| Posted: Mon Apr 07, 2008 10:13 pm Post subject: |
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Alex, did you feel like they lied to you at all? You were there and I wasn't.
I think the question sounds genuine, and that they would like to see it.
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Bill Cosby: Dad is great! Give us the chocolate cake!
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Orwell
Outer Party Member
Joined: Aug 09, 2007
Age: 20
Posts: 8369
Location: Room 101
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| Posted: Tue Apr 08, 2008 12:19 am Post subject: |
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| serenity wrote: | | I'm getting kinda sick of this whole AS haughtiness toward LFA. It's like saying "society should accept us, and not expect us to change, but the ones on the lower end of the spectrum need to change for society." I don't understand this logic. |
I agree with these sentiments completely. If anyone's changing for society, Aspies can do so more easily than LFA. It's horrible that a lot of Aspies (myself included at some times) assume that, while we are just different, not defective, those lower on the spectrum really do need a cure. Basically, we're practicing the NT-style bigotry that we spend so much time complaining about.
Of course, this is predominantly an AS forum, so a lot of people here don't identify too much with the LFA group. This is a real shame in my opinion, no matter where someone is on the spectrum, they deserve respect and acceptance as a human being.
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WAR IS PEACE
FREEDOM IS SLAVERY
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MysteryFan3
Ex-COBOL dinosaur. roar.
Joined: Jun 09, 2007
Age: 52
Posts: 1358
Location: Indiana
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| Posted: Tue Apr 08, 2008 12:45 am Post subject: |
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As long as the submissions come from NicholasGray there shouldn't be a problem. Associating WrongPlanet with Autism Speaks could give the general public the wrong impression. It could give the impression that WrongPlanet is an auxiliary or subordinate organization of theirs or is funded by them. While I think Ms. Wright means to help, I don't think she has moved far enough away from the view of autistics as simply low functioning autistic children. High functioning autistic adults simply aren't on her radar yet, but we will be. Also, they need to move away from showing mostly images of stressed-out autistic children for their fundraising. Exploitation will backfire eventually.
Suggestions are made for showing exceptional autistics. How about a day in the lives of autistics who do everyday things? Raising families and holding jobs. Day-care workers, teachers, truck or cab drivers, chefs, IT workers, etc. See if the hopeful messages are allowed on the Autism Speaks site. If so, it's a step forward. If not, it's business as usual.
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To eliminate poverty, you have to eliminate at least three things: time, the bell curve and the Pauli Exclusion Principle. Have fun. |
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bikermark
Yellow-bellied Woodpecker
Joined: Aug 07, 2007
Age: 50
Posts: 63
Location: NW Pennsylvania
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| Posted: Tue Apr 08, 2008 12:56 am Post subject: |
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| MysteryFan3 wrote: | | Suggestions are made for showing exceptional autistics. How about a day in the lives of autistics who do everyday things? Raising families and holding jobs. Day-care workers, teachers, truck or cab drivers, chefs, IT workers, etc. See if the hopeful messages are allowed on the Autism Speaks site. If so, it's a step forward. If not, it's business as usual. |
MysteryFan3, I posted this at the Autism Speaks website, and it's still there:
Free Range Aspie and Working for Bob Wright
I'm Mark, I'm 49 and was Dx'ed with AS last summer. I have been an employee of General Electric for over 18 years.
The first four years were in the General Electric Machinist Apprentice program, a 40 hour a week hands on training program, requiring very good math skills (still have my slide rule), as well as requiring year round night school at Penn State. I attained a Mechanical Engineering Technology Degree with a 4.0 GPA in that time, paid for by GE.
During that time GE recognized my contributions to the Company with two separate "Managerial Awards." It is extremely rare for someone not in management to get one, I got two. I was the first of only three Apprentices to go to GE's Corporate Entry Level Course at the Company's Crotanville facility.
After graduating from the Apprentice Program, I knew my people skills were ill suited for a management job, and joined the work force on the floor as an NC and CNC programmer and a "second hat" duty as a Material Controller for the Heavy Fabrication building. These jobs were normally filled by salaried people, but I was among a small test group to try something new, highly skilled and highly educated union employees doing those things.
After those positions were eliminated, about the same time Asperger's made the DSM IV in 1994, I was laid off for a year.
While unemployed, I taught myself HTML on a text editor, created a commercial website for a local company for a fee, and got a job at the Gertrude Barber Institute www.barberinstitute.org/ repairing computers. The funny thing about life is that the Barber Institute is primarily for the autistic youth of the area. This was 13 years before my Dx of AS.
I was recalled to GE in 1995, and worked a few different jobs that were what would be called "semi skilled" positions. My senses of social justice and moral integrity lead me to become an occasionally vociferous union steward. Eventually my senority and skills got me back to skilled positions, and now I am an inspector and auditor in QC at GE in Erie, PA.
While at GE, I was sort of active in the community also. During that time I have been a T Ball assistant coach, Den Father for the Cub Scouts, on the Board of Directors of ABATE of Pennsylvania http://www.abatepa.org/index.html for four years, and custodial parent of a son with Social Anxiety Disorder after my divorce.
Since my Dx, I have taken on the challenge of restarting the local chapter of GRASP http://www.grasp.org and am ready to "come out of the closet." My desire is to improve people's perceptions, and am willing to announce to the world "Look at me, I'm an independent self supporting community asset with an ASD."
It would also be nice if GE decided to recognize neurodiversity as part of the extensive diversity policy in place now. Sometimes my autistic behaviors are misunderstood, and my union http://www.uelocal506.org/ has come to bat for me more than once.
Perhaps enough faces and stories will get us recognized as different, because the only thing handicapping me is society, in all it's facets.
Mark
For those that may not know, Bob Wright is Vice Chairman of the Board at GE
http://www.autismspeaks.org/community/forums/showthread.php?t=5932 |
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