Offer from Autism Speaks, please give your opinion

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Here is a link to an article by Cal Montgomery at Ragged Edge, with a particularly interesting section about dependence.

The piece about "dependence" starts almost exactly half way down the page, at the eighth ("sort-of") B in Part II, just before Part III.

http://www.ragged-edge-mag.com/0501/0501cov.htm

Thank you, Belfast, for the ref. On the thread " Producing Space, Producing Disability" in General Discussion, at :

http://www.wrongplanet.net/postt62657.html

Last edited by ouinon on 11 Apr 2008, 3:02 pm, edited 4 times in total.

Very few people are truly independent. The only example which comes to mind is Henry David Thoreau living in a simple shack he built all by himself in the woods, as he produced all of his own food and garments. That's not life in the 21st century US. Moreover, everyone benefits from public services in numerous ways. I know people complain a lot about social services, but should they? To me, the economic way of looking at the situation is inappropriate to begin with--as though people can be reduced to a "net cost." But even if you are going to argue this tract, I think it's pretty short-sighted. I want services to help disabled people to "contribute" in some way, whether in a professional or volunteer position. Disability payments should be available to those who need it, but I think it's tragic that so many people are forced to go on SSDI because of the discrimination and lack of understanding/accommodations which they face. It's the classic parable: you don't give another man your fish, you help him learn how to fish on his own.

Exactly.

But this is not a model of "dependence" that you are describing. More like, "targeted support." Which is a very wise investment.

I vote yes. There is a core of desire to help in autism speaks. It is worth a try to get them to direct that desire a little more intelligently and perhaps with a little more empathy.

ouinon wrote:

Back on the 3rd page of this discussion I wrote the following:


Even if that were not posted already, I would at least think you could offer the courtesy of not attacking something until it exists for you to pass judgment on it. More or less, you are accusing me of being irresponsible in how I'm presenting autism with this project, when in fact I haven't presented anything yet! All I've done so far is ask the community at WP for its input on what you'd collectively and individually like me to include when I eventually do start work on this project. If you consider that irresponsible, then I'm really not sure what you expect from me.

And not that I should have to check in with you for your personal approval every step of the way, but you seem intent on presuming the worst about my intentions....

This afternoon I called an old friend of mine today, Tom, about his family being a potential candidate for interview. Tom is the father of two LFA children, now in their teenage years, as well as one NT son. The mother of these three did not cope well with the added responsibilities of raising ASD children. Joe, the youngest, presented with strongly self-violent stims and other than singing along with cartoons occasionally, remained non-verbal for several years.

The mother eventually gave up and left Tom to raise all of them on his own with nothing more than a school teacher's salary. But because he took the approach of trying to learn their world as much as he could instead of forcing them to fully adapt to his, they have been able to do it, even though they cannot afford almost anything in the way of additional special services.

Neither of his two LFAs will likely ever be able to live on their own without supervision. It's simply not in their future. Joe remians largely non-verbal and Jacquie is happiest making brightly colored paintings while she sings to herself in a language no one else shares. But they all live very happy lives and together they have built a wonderful integrated ASD/NT home. They even added a new mother figure to the mix a couple of years ago who has had to be inducted into their world from scratch.

I consider this a success story worth sharing. I think Tom and Jimmy, his NT son, could offer a lot of insight and hope to NT parents who have just been given the diagnosis. Instead of them finding nothing but horror stories and panic, I think this might offer some encouragement.

And if after you've seen it, you still disagree, feel free to lambast me to your heart's content. But until then, pease kindly refrain from presuming to know more about me than you do. Unless you have some psychic ability you have neglected to share with the rest of us, all you are doing is tossing about speculation that is both hurtful and inaccurate.

ouinon also wrote:


I would also respectfully suggest that people with ASD should probably exercise just as much care not to lump all NTs together as they ask NTs to take such care not lump ASD into one batch. Saying all NTs crave constant chatter and social activity is nonsense. Many prefer solitude and introspection, nice quiet corners to reflect on life, a calm meditative atmosphere and some respite from the wants of other people.

Here's the rub... anyone who can join AS and IGNORE the fact that they are pro-eugenics because of their association with CAN and pro-eradiction because that is all that eugenics can possibly mean, is viewed as that sort of parent.

There isn't a gray area. If you want treatments, and aid and support and succor, then say so, if you want to support eugenics and eradication then say so, but you can't support eugenics and eradication and expect those of us who are horrifed by that to be accepting and appreciative that this is an acceptable stance. (I say "you", but I mean "one")

NicholasGray, as you weigh in on opposing views as to whether or not you want to align yourself with Autism Speaks I think you should read/learn/educate yourself on who is propagating the whole idea that the organization stands for the temination of life that is different which is what eugenics boils down to. Not that you need it (you're an intelligent chap), but here is a definition of eugnics:


"eu·gen·ics Pronunciation[yoo-jen-iks] Pronunciation Key - Show IPA Pronunciation –noun (used with a singular verb) the study of or belief in the possibility of improving the qualities of the human species or a human population, esp. by such means as discouraging reproduction by persons having genetic defects or presumed to have inheritable undesirable traits (negative eugenics) or encouraging reproduction by persons presumed to have inheritable desirable traits (positive eugenics). "


Autism Speaks does not support selective reproduction, abortion, selected reduction, family planning or lack thereof of any sort. They do not discourage anyone from having a baby. They do not discourage pregnant mothers to terminate their pregnancies. They do not diminish the lives of any baby that is disabled or sick. They do not encourage (as Hitler did) the reproduction by those they deem selectively superior. The whole eugenics notion is propagated by anti-cure people, primarily high-functioning Aspies, because they are insulted by the idea of a cure and have equated "cure" with the "extermination."

Autism Speaks is seeking a cure of the symptoms that make people Autistic and that is NOT THE SAME as wanting to wipe Autistics off the face of the earth. It is the symptoms, disorder and comorbids that enable Autistics that is what they're fighting against. The very same problems that Aspies get on WP day-after-day and complain about. The Wrights have an Autistic grandhild. Everytime somebody says they support eugenics, it is a slap in the face to that child that they cherish and love so much. These rich, educated people who could be yachting around the world in their senior years have gone on a life mission to battle Autism because of that child. They would never want to wipe that child off this earth because they love that child more than life itself. Just like I love my children more than life itself. Shame on any human being who'd tell parents like us that we support eugenics!

To be anti-cure is one thing. To say that an organization supports eugenics is just as bogus as saying Wrong Planet supports the superioirty of Aspergers. These people are opening the door for Aspies to share their stories. Walk through the door and show them what you've got! Show them the higher-side of the spectrum...that you are respectable people who may have some challenges, but ones that are capable of being business owners, web desginers, IT specialists. Show the positive side of that in order to give encouragement to other high-functioning families. Because that's what they want to do. They want to hear your stories so newly-diagnosed families can see all sides of the spectrum.

Yawn... do you believe what you post, Troll?

http://uk.youtube.com/watch?v=OKYkOo71_8Q

If you're suggesting that the aim of CAN has changed since AS took them over... you'd think they'd have something to say about it.

Just because you say it isn't so, doesn't make it so.

From Wackipedia:



Nuff said.

Pepperfire, you can insult me, call me names, belittle me, accuse me of trolling, whatever you want to do. It is but a reflection of yourself, nothing more.

To others, this is a good thread on an important subject. One that may bridge a gap between two groups (WP and Autism Speaks) and possibly open the door for more advocacy on their part for Aspies. I'm willing to discuss this with anyone who wants to do it respectfully, even if we don't agree.

Ya think?

Remove my name from your tagline and I might feel a little differently towards you, Troll

I do not think that Nick has EVER REMOTELY suggested that he is going to "align" himself with Autism Speaks.

I'm not have a go at you specifically, NewportBeachDude, but people seem to be using this thread for "tub-thumping" agendas.

Can we get back to plain statements of opinion and helpful suggestions?

I can see no objection to making videos. As to whether they do or do not get offered in a form whereby Autism Speaks may host them (non-exclusively)... well, that is maybe worth discussing.

Changing the world isn't guaranteed. Arguing about details and strange ideologies doesn't belong here.

You're right about the word 'align.' I should have said cooperate or something, but you get the gist. I'm just saying it would be a positive thing.

I agree with you about the agenda thing. I don't have one. I just feel if Aspies feel shutout of the Autism dialoge, doing something with Aspeaks can help and possibly lead to bigger/better things with them. It's a start. Peace.

Do you think it might change their minds about us, Newport?

And personally, I believe that we are all connected to each other, anyway, in such a way that if we help someone else, we help ourselves.

Yes. I do. I think the more awareness about Aspergers the better because I think many people out there don't know enough about it. A lot of people have never even heard of it. I think it would be cool if Autism Speaks had separate categories on their site for Aspergers, adult Aspergers and adult Autistics. These categories would have resource links that would help families and adults. ASpeaks is still very young and I betcha that as time evolves, we'll all see more information on there about these three categories, not just Autism. My kid will someday be an adult Autistic and we may look to those resources for information.

Anyway, I hope your kid's doing well, too. Have a good weekend.

Now I would never lower myself to blatant self-promotion but .....

here is a video my sons and I made over the Easter long weekend.

[youtube]http://youtube.com/watch?v=7-ZBxFYFvuA[/youtube]

This is our story. Our story is different to everyone else's story. This is why many, many videos need to be made featuring many, many different families/individuals.

I hope some other WP members will start making their own videos along with NicholasGray. They need to be made and broadcast in a number of forums: Youtube, WP etc etc.

Nicholas Gray sounds like he has a good background with meeting different families/individuals on the spectrum. He also sounds like he is 'street-smart' and can protect his work.

Helen