Autism TV and Autism Speaks

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+1000

John, the vast majority of us are living on disability benefits.
For alot of us, even donating $20 could mean the difference of not having a decent amount to eat for that month

Not to say we're ALL failures though. Some select few aspies out of the already relatively small aspie population actually make pretty good money. Just not that many though.

OK, you are living on disability and Autism Speaks is raising millions every year. The Autism Talk YV project is going to cost a bit of money, to travel the country for interviews, get production equipment, etc. Clearly, Autism Speaks are in a better position to fund the work than you.

So why attack Alex over this?

Why attack Autism Speaks for a gesture that brings something interesting and useful to our community?

Why not give it a chance and see what develops?

i'm not attacking Alex. & although admittedly i'm not a huge fan of Autism Speaks & don't approve of their views, I rather like this site and Alex's other endeavors .
and besides, teaming up with Autism Speaks seems like an almost clever idea in the "keep your friends close, but your enemies closer" kind of way .
Teaming up with them means Alex can't publicly bash them like alot of members here would surely love him to, but it also means they can't say negative things about us either if they're supposedly tied their organization to this site in a friendly gesture in the public eye.
Plus we reap the benefits of their financial support in the case of the funds for the AutismTalk project.
And since we have that current connection with Autism speaks, then with any luck, we might over time be able to get more Aspie/Autie representatives in there to disclaim some of their more damaging propaganda and actually get more of the money going where it needs to be going. ( I mean honestly, for the love of god, there is literally more paid into the combined salaries the of Autism Speaks' president & vice-presidents, etc. than is actually going toward helping people who actually have Autism Spectrum Disorders. That seems wrong to me. They make millions; what are they doing with it all if not helping who they're supposed to be helping?

i just thought i'd jump in and defend the valid point that most of us are poor .

In my opinion, I am starting to get disillusioned with WP and Alex. Siding with Autism Speaks, a corporation posing as a "charity," is something that violates basic ethics. How can a community for those on the spectrum favor a group who seeks to eradicate and undermine us?

Plus: Can anyone explain the title of the homepage? "Wrong Planet - Autism = Good"? I don't understand, and I can't believe this.

The comment that Autism Speaks takes in millions and does nothing to help autistic people is oft-repeate and totally untrue. The more accurate statement is that Autism Speaks does not spend much money for direct support of autistic people. They do not do many grants for community centers, outreach, and the like.

Why?

Because their mission is to fund science to solve the very real problems autism presents us. There are other groups like Easter Seals and United Way whose charter is to do outreach. Autism Speaks has funded millions and millions of dollars in research, and I now have a voice in choosing what work to fund. I can't speak for everyone but I am keenly aware of the need to fund studies that answer why so many of us don't have jobs, and what the secrets of success for others are. We're studying new therapies to help adults with social skills, and many other things. We have some really exciting work going to help autistic people who have severe speech difficulties. You can read about all that on my blogs.

And I know what you are thinking . . . they have funded work you did not agree with in the past, and you may not agree with all their choices today. Fine, but if you don't like it, do what I have done . . . go inside and CHANGE THINGS with your votes and actions

I now have a voice in choosing what work to fund.

NO, you don't John, you are one voice and a kitten's voice at that in a room full of tigers.


I can't speak for everyone but I am keenly aware of the need to fund studies that answer why so many of us don't have jobs

OK KEEP CALM... KEEP CALM...

Arrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrgh! ******* ****** *** ******** URRRRRRRRRRRRRRRRGGGGH!

I just noticed that too.

lau! lau!

where are you? i need you here, now!

New Republic, I know you don't think one person makes a difference but I disagree. I see the difference. I saw it at the National Institutes of Health reviews and I see it here. It's not a "one vote against thirty" situation where I am outnumbered. Rather, it's a situation where the person with the best oratory skills makes the most difference. People do listen at these things and they are scientists, not tigers.

As to the ARRGH about the jobs comment . . . what's up? You yourself said it, and I agree. It's a major social problem for seemingly high functional people.

John,

The ins and outs of the Jobs thang leads on from the ins and outs of the Education thing.

Hans Asperger dealt with the latter point in 1943 in his paper (wrt us Higher FA's):

http://conversationalhysteria.blogspot. ... ne_15.html

And the former:

http://specialisterne.com/ (wrt us Higher FA's)

My Urrrrrg! had its genesis in the fact the the knowledge base to deal with these issues is already stuffed to the gills. We just need to act on it.

The other 20% of the Spectrum is a different matter all together - and certainly needs, deserves and must have research to tackle the very serious issues...

I

We're screwed.

honestly, that was my reaction in a nutshell. i feel a little lost.

i don't understand why alex planck, or john robinson for that matter, would want to have any dealings at all with an organization that seeks to eradicate one of the biggest things that makes them unique.

i find it hard to find pride in myself and in this community when the people at the 'top' of the autism community are aligning with anti-autism charitable organizations.

john robinson,autism speaks does indeed fund research for autism. but the research is designed to find ways to eradicate and treat autism, which is not the same thing as supporting persons with autism to cope.

alex planck and john robinson, you do indeed have the ear of important organizations - research, federal, charitable, etc. please don't forget why you are there. you are there because you are one of us, but with charisma, drive, and the ability to move confidently in the NT world. we are trying to do this too, but we have our own issues we are trying to work through. it's not like we can pull ourselves up by our bootstraps and simply become powerful in the NT world. if you will speak on our behalf, please speak FOR us.

You say "the research is designed to find ways to eradicate and treat autism, which is not the same thing as supporting persons with autism to cope."

If an autistic person can't talk, one "treatment" they would benefit from would be one that helped them speak.

Autism Speaks is funding research that's designed to remediate autistic disability, or otherwise help autistic people living today. They have funded other avenues of work in the past but all I speak to is what I am involved with today. You guys seem stuck on the "getting rid of autistic people" idea and it's just not true, at least with respect to the scientists and management I am involved with. I think you get those messages from a small portion of the parent volunteers

sometimes it seems like the parent volunteers have the loudest voice, in terms of public advocacy on behalf of organizations like autism speaks.

true enough that some treatments may assist people with autism in a way that helps them to cope. however, autism speaks considers autism to be a negative condition overall, which means that their funding is skewed toward elimination, not assistance. according to their facebook page:

At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders. We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society and to bringing hope to all who deal with the hardships of this disorder. [bolding and italics mine]

yes, treatments (the least contentious approach) are included in the list, but it is painfully obvious that eradicating autism is a primary goal. why would you want to do that?

(n my last sentence, i meant to say, "why would you want to be involved with an organization that does that". i do realize you are not the chairman of the board.

I can genuinely understand why people are upset, but it's still a shame to see this argument taking up time and energy when there is so much important work out there that needs to be done for our community. I hope that's something most of us can agree upon, at least.

Last edited by blueroses on 08 Aug 2010, 1:45 pm, edited 1 time in total.