The Black List - think before you buy

Post Reply New Topic

-.- Yeah you're not getting it. Thats fine.

Ok, explain to me why this is:

Yep I agree however like I do locally I want to argue for more money whether it be service programs or research to go into the actual causes. I want the system to be efficient, cause orientated and find every little mal-productive loop hole and shove it to the side politically.

Autism Speaks being a bad organization simply because some folks make allot of money is not enough evidence for me to hate them. It is enough for me to say on the record with the media like I do with much smaller agencies (organizations) is basically say I want to find a way to not need those people expenses. It comes down to envy basically but also "need". Non-profit status are used for high earning potentials as well and if the folks can be replaced and the organization can still be as effective then go for it.

This issue needs to be isolated, brought forward and resolved without ethically conflicting with the right to treatment advances otherwise politically it can be seen as just an issue brought forth for other political interest. Ethically my conclusion is I feel the same way but despite the bad good is still being done which people with autism agree with and no organization is perfect. The bad seems to be inefficiency that can be bettered to improve treatment research potentials.

That's my assessment and PR recommendation to folks.

Ok so the Ducky wrote this quote:

"Autism Speaks spent over $1.7 million on fundraiser expenses, and made only $142,693 from that investment (that's the net gain, or what's left after that $1.7 million+ is subtracted from the total monies gained from the fundraisers). In total, they spent $17,756,876 on employee salaries, pensions/401ks, benefits, and payroll taxes. By contrast, their grants to individuals and communities totaled a paltry $66,670, not even a drop in the bucket compared to their total reported expenditures. "

This is an interpretation of expenses. We don't know all of the facts. I want to know the absolute facts. People have careers they do there jobs and they make money but sometimes it seems to much money when organizations might find skilled and talented people for less. I know of non-profits that hire family members and pay them very high wages. I don't tolerate that in the name of my disability personally. However a fundraiser could also be an awareness campaign and there was a loss. We don't have the input from Autism Speaks yet to explain this but even if they explained people just don't trust and dislike the kind of awareness.

I want to know the facts. Some organization exist to hand out money to folks and some exist for science reasons. Some exist for research and awareness reasons. Autism Speaks seems to be a PR organization with emphasis on research and people don't agree with that research all the time. It might (maybe) lead to abortion by understanding autism genetically and or in other ways. The tactic has been to not like research and just say hand over the money per say to people with autism and families. I don't think the two go together well and people should start other organizations for this reason and research will be known for the potential of abortion related politics but people with autism have the right to treatment advances research can bring.

The problem is even if they were perfectly efficient, they have several issues that need correcting because the community will accept them. (They're not, 25% is going to salaries, another 20% ish is fundraising and awareness spending)

The first is simply their message. The message is never hopeful, it's disparaging and insulting. It makes us seem beyond real help, so money goes toward unfindable cures instead of viable therapys. What organization does this to the people it's suppose to be helping?

The other is the focus of the organization. After wasteful overhead and advertising, Almost none of it goes to helping those with the syndrome. There are plenty of ways they could help the community. While therapy and special classes doesn't help everyone, it can help alot of us, and AS has the ability to help alot of people but does not.

Instead almost all of it goes to research, including the infamous "do vaccines cause autism?" Studies. Not all the research is bad, but they've made it clear their first concern is to find a pre-natel test. If the pre-natal test does comes out... well that doesn't help anyone. That's just neurological genocide.

Frankly I just don't trust their priorities. They may mean well, but I don't think they understand what they're doing.

Alright so I'm going to spend a good 45 minutes on reply special for you but it will also help others understand. I need for you to read it and I'd like for you to think about saving it on your computer. Neither you or I will be happy with what I say. Yet it's just saying the blunt truth within the spectrum of understanding in public relations I have studied. I will post tomorrow I have to make candles now.

Ok. Awareness derives research funding the more they are known the more it pays off in the long-term. They have invested heavily into awareness marketing and are people with connections to Hollywood and the corporate world. I would have done very much similarly but a little differently with the inclusion of self-advocates. Yet they want the image of autism to be seen as serious and with higher functioning people often people do not see the help needed and hell when it's needed folks at times think your just being lazy. Other-times it seems people are able to do well and well they don't need help. Not everyone is an ARI or a Temple Grandin and of course anti-cure wants to see these folks for their image of autism just as pro-cure wants to portray the most horrid examples. I've said before there is a balance and dammit folks think having a developmental disability means totally incapable and child like. I've confronted this creatively.

Well most with autism I know need help. However as long as we are aware we have self-esteems. This to needs to be balanced in ethics because not everything is going to make me happy and I've learned this. I'd like to think of Autism Speaks as coming from the mentality perhaps of an overprotective mother thinking the worse, wanting the best and perhaps some otherwise.

Yeah well sometimes overprotective mothers do too much and end up hindering their children's development.

Help would be awesome, but they aren't providing it.

I would have loved to know in high school about my aspergers. I would have loved it even more if someone had bothered to work with me on my social skills. Now there are more programs and therapys available to us, but Autism Speaks isn't providing any of them. You basically have to hope for REALLY good health insurance.

Or live in California with the Lanterman Act and have at least Autism but not Asperger's Syndrome. I have HFA and I get allot of help. Autism Speaks is not a direct service organization. You can contact them about advocating about that kind of help.

Yeah I do live in California. I wasn't even blinked at going through school. No one knew what aspergers was back then. There's more help available now, but thats not from AS, thats from good health insurance and state/local programs.

What is blinked at to mean? Blinking has a hidden meaning and (or) to describe the absents of "something"?

I just tried to stay away from the high stimulus and wanted to be left alone so went to the special education office, resource class and tried to destimulate. Whether or not I do socializing the right way when I want I talk is not important to me or having many friends because I do not feel the need to. However those environments were very bad on my mind (mental fog and shut down) but definitely not an anti-people person because I do not hate people. I am not sure about the blinking thing.

I am still working on that writing tonight about the autism abortion issue and will post it in another new post.

Ducky9924---I was like you with the socializing thing in school. I was in grade school in the early 1970s, so Asperger's wasn't known where I live either. Teachers wrote on my report card that I needed to socialize more. Needless to say I didn't. Teachers just didn't seem to understand differences. It was like my huge pencil collection which harmed no one. A teacher took them away from me in first grade. I never forgot that. She just didn't understand my need for pencil collecting.

Ci---Like you, I wanted to be left alone. I used to climb to the top of the monkey bars at recess to have my own space. I also use to walk patterns around the playground by myself. It sounds to me like you are like me---introverted? I always state that I am not afraid of people, it's just that like you, its the stimulation thing.