Offer from Autism Speaks, please give your opinion

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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

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.

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

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

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

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.

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-fi ... rodiv.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.

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

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.

Here's the video:

[youtube]http://www.youtube.com/watch?v=hmDzoVYAfEg[/youtube]

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.

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.

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.

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.

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/f ... php?t=5932

Thanks for posting the video Alex..it help reconfirm what I "thought" but was not certain of....The founders of Autism Speak are only interested in projecting an image of "caring" and their real agenda is to make money and have personal influence. How could I know this with certainty? Because they are masters of double-speak and only people who are trying to deceive incorporate such techniques.



"Making deals with the Devil"

Through out American history, out government has made "deals" (most of them covert) with fascist dictators, if we thought it might benefit us in some way..ie...."lesser of evils" ideology. They have all ended badly and soiled the reputation of America (at least for the minority of persons who bothered to educate themselves about the dealings.) Two examples that comes to mind are Saddam Hussein, (who was willing to fight out enemy Iran) and Al Qaeda fighting our enemy (the "Evil Russians")....need I say more?

There have been many other historical examples of minority groups that have joined with more influential or socially acceptable group in the hopes of raising their own publicity or empowerment, to find the opposite effect. I consider this the "Divide and Concure" approach and I think it is the mostly likely thing to happen. If they can divide the AS community into low and high functioning or only present the highest functioning to validate their personal agenda of "society doesn't need to assist people on the high end of the spectrum, cause look how smart and successful they are"....who benefits? Not us.

In my mind the whole concept of high and low functioning is much to complex to make a good poster or 30 sec advertising spot, which appears to be there marketing technique. They are not about in-depth analytical thought, they are about emotion laden double speak to manipulate concerned and empathetic individuals into opening their check books. You really think a few examples of married or employed aspies is going to change their mind set? Did you listen to her words? She can't even wrap her mind around the concept that autism is anything but a disease,dysfunction or disability...this is not a "bright person" and I for one have no trust or respect for her or her group.

I also don't think her offer is based on anything but wanting to create an illusion of being a caring open-minded person. It was spoken in response to someone pointing out how negative their presentation of autism is.....It was not something she thought of her self out of a change of mind or gaining some empathy of autistics experience. It is called "saving face".

I can not say this strongly enough.This is NOT a trust-worthy person who has our best interests in mind. It is a money raising brain-washing organization based on manipulating reality to meet their agenda. To believe otherwise is wishful thinking. Rather then waste one minute on this organization, we are better served to join ones that already respect us as humans or create our own. As more and more adults and children are DXed with aspergers, our strength can grow from within(look at the numbers for WP since it began)...patience not compromise, is called for.

I see. Then I have changed my mind.

Of course, we are brought up to have respect for our parents and people with influence, so its only natural we would initially presume them to be responsible and acting in our interests, but I can see now that being independent from them is probably more wise.

My own suspicion is that unless someone has an official certificate of diagnosis as autistic from their childhood Autism Speaks will say that anyone doing well as an adult was never really autistic.

Perhaps it might be a good idea to submit just a couple of such lifestories, with doctors certificates, so "unimpeachable" by A Speaks, on which no doubt can be cast , or spin put, and see what Autism Speaks "does" with them, before offering more.