"Autism Speaks" Response to Autistic Input

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That research may not fit well with autism is simply a difference philosophies but yet as a research fundraising organization originally it caters to those specific human rights. It may not put money in my pocket or yours but still research is a focus in the autism community and is very well supported.

Within reporting purposes for the BBB, research is one of many subcategories of programs and services. The programs and services of different organizations vary greatly and entail many subcategories.

I clearly stated that of the 69% percentage that goes to programs and services, approximately 1.6 million dollars goes to direct financial aid for Autistic people, approximately 15 million dollars goes to awareness and educational programs, and approximately 21 million dollars goes to research.

These figures added together comprise the 69% of total programs and services for the autism speaks organization, and again, 39% of total revenue is spent on admin and fundraising expenses in both organizations.

You don't agree that the organization should be spending the money on research, others hold that same opinion as others; that is a reasonable opinion colored by experience and knowledge; obviously someone that disagreed with that aspect of the mission would likely support another organization, whether it through financial efforts, or through volunteer support.

Some websites are populated mostly by autistic people, focused on their individual issues, which is not surprising because that is what it takes to survive in the world.

If one is concerned about the issues of high functioning autistic people and the personal benefits that one is looking for, organizations like the AANE organizations seem like the ones that would make common sense to support, at this time. Particularly if one is looking for specific support for Aspergers.

It's hard for one organization to meet all the needs of autistic people, perhaps with the support of parents, whose children are moving into adulthood, autism speaks will be able to provide a greater benefit there in the future.

The future demographic of autistic people moving into the adult population, will probably in the near future, be seen as highly a pressing issue as research for a cure has been in the past. Particularly if social programs are cut further by the government.

One day in the future, it is possible that some autistic adults may heavily depend on funding provided by autism speaks for basic survival. If so, it potentially could be because of the generosity and support of those that wish to fund a change like that within their mission statement.

It could be some of the same parents that are funding them now in honor of their children, that make the difference in the future for available funding in honor of their children as they become the autistic adults of the future.

The grandchild of the people that started Autism speaks is not going to remain a child forever. People tend to understand and support things differently as their personal experience and knowledge changes.

There are those out there that have the 25 million dollars to donate to jumpstart an organization. If a few of those people get on board with the needs of autistic adults, they indeed can have an influence on the missions of large organizations.

Those are the type of people that many disabled people may count on for support, if and when government money for social programs becomes close to non-existent.

I am sure "Autism Speaks" would love that, then they would have the power of life and death and some of us to use and abuse to their hearts' content, which is why that must be prevented at all costs.

Should it become the case I was wondering if you would yourself provide an alternative instead of consistently predicting negatives. I look to the candle project I created that might in my imagination and hopes provide perhaps living conditions should it happen for myself and others who make the candles. That's just my survival mode that tends to go 7 days a week.. It is my belief organizations seeking to get along and individuals seeing the best interest of others in portrayals they don't necessary feel emotionally like expressing of themselves to social peers when they are themselves included like in college would potentially see the benefits along with the potential downfalls.

I think protectionism is necessary but inclusive progress is part of independent survival. So when an image of autism for the sake of research progress does not necessarily interfere with a persons personal life because they seem so very high functioning I don't really see the great injustice. Organizational efficiencies along with effectabilities I believe is a strong argument for the potential protectionism and enablement of others too.

Have you considered starting your own enabling autism project?

I have seen some people go as far as to say that Autism Speaks should just turn over all the money that is funded by concerned parents over to autistic people because it belongs to autistic people. With no regard, to the fact that the money belongs to other people and they are funding specific missions within a charitable organization, most of which are not direct financial aid to autistic people

Some people complain because not enough of the funds generated by autism speaks goes to the adult autistic population. Some are upset that a small percentage of the funds they receive go directly to the autistic population for services, but yet, you would be upset if the funds did go to the autistic population for aid, because people other than autistic people would be running the organization that you don't trust. Am I understanding you here correctly?

So, as far as you are concerned, is it better that the organization continues to operate as is, so they won't have the opportunity to provide needed subsistence support adults with Autism in the future?

If another organization that large were to replace it, who do you think would be running it? It's not likely that a group of autistic people are going to run multimillion dollar charities, that require high levels of social skills to influence people to donate to a cause.

If the government fails to fund the subisistence needs of permanently disabled autistic people in the future, how do you think it is going to be funded unless the people you refer to as NT have a part in running the organizations and funding the organizations.

After all, 99% of the population doesn't have a diagnosis at this time. The one percent that needs the help isn't going to be able to provide the financial assistance that is needed for themselves.

We have to face the reality that the autistic population as a whole is going to need assistance from society, other than autistic people, in some way or another in the future to survive, because a good percentage of the millions of people in the world that have been diagnosed with Autism Spectrum disorders are permanently disabled and not able to support themselves. Of course, along with all the people that are partially disabled with autism that need "a step up" in life.

Where is the help going to come from that will satisfy your requirements here, if it isn't the government, and it isn't fund raising organizations staffed and funded by the general public, that outnumber diagnosed autistic people by 99% of the population?

I have a lot to say and can't say it all now, but just very quickly: If I'm understanding ahogday's argument correctly, he's saying that in the future, some autistic adults may be dependent on services provided by Autism Speaks. I would say to that, that would involve them developing services in the first place! Which would be great, actually, assuming that it's well-done and in keeping with the principals of self-determination that are well-established in the general disability rights movement. But why on earth should we support them now for things they might do in the future? It doesn't make sense to me.

It's possible that the Wrights will make the organization more adult-oriented as their grandson gets older, though I believe he is still quite young so that might be a while. But, hey, we can hope. I just don't think it's particularly rational to support an organization on the vague hope that it might change in the future. I'd also note that because the Wrights are extremely wealthy, they're unlikely to face quite the same issues as families who are not. A lot of problems that come with being disabled or having a disabled family member can be circumvented when you have enough money. Many people with spinal cord injuries criticized Christopher Reeve, when he was alive, for using his celebrity to focus so much attention on cure when there are so many accessibility issues that they face right now. But Christopher Reeve was more privileged than most wheelchair users. He could easily make his house accessible and hire personal assistants to help him with the things he needed help with. Not so for most people with disabilities. Hence he could afford to focus on the long-term goal of "cure."

I really urge people who are interested in these issues to learn more about the broader disability rights movement. These problems are not new, and there is in fact no need to reinvent the wheel. I think the parent-run "autism advocacy" movement really suffers from a lack of knowledge of the broader disability movement, and a lack of willingness to engage in joint activism on common issues. How many people here know about People First or Self-Advocates Becoming Empowered? If you did know about these organizations, ahogday, I highly doubt you would make absurd statements about how there are no autistic people able to be involved with Autism Speaks.

I've gone to a few People First meetings. Also Iv'e worked with a parent organization and got them on the local T.V news and we were on the news together. I just don't see parents or people with disabilities as rigid as some of the so called popular online and offline movements that are either new or older. People want to work, have hope and opportunity. Although the People First setting is kind of busy for my brain I will talk to the president again that knows and likes what I do who is also the consumer advocate in the system here. I seem to be able to get parents even when their children are young to think about and even support adult issues when I try. I am not very socially involved however in general other then from a distance but I think I will appoint someone to handle that for me. I have a social networking theory for inclusion. The behaviorist I have is working with me on differing sensory environments and environment changes. But I just don't see the reality accounting for the pessimism with parents other then when poor confrontational approaches result in avoidance in theory. A local parent group invited me to a fundraiser recently and they like what I do for adult advocacy.

I didn't state that there were no autistic people able to be involved with Autism Speaks. here is my statement again quoted below from the last post.

My comments were in relation to Zeraephs earlier statement that autistic people could not tolerate groups well, not even a summer camp designed for autistic kids with other autistic kids.



I state here that I believe there are probably some people with autism that could qualify to run the organization. There are clearly many autistic people that are able to be involved in the organization, like John Elder Robison.

I stated in my last post that it was not likely that people with autism are going to run an organization like this. I'll stand by that statement as a reasonable one, because of the extreme social skills required to run an organization like this; it doesn't mean though, that no one with autism could qualify or would do it. Here is a quote of my statement in that post again:



Zeraeph makes the statement that autistic people can't tolerate groups, and then suggests she would rather have them run a huge multimillion dollar charitable organization that requires a myriad of social interactions with diverse groups of individuals across the country. I don't see those two opinions as ones that match, but again as stated above in my quote from the previous post, I personally don't discount that there are people from the autism spectrum that aren't qualified for the positions or completely discount the possibility that someone on the autism spectrum would want to do it.

There aren't many people on the autism spectrum that does what Bill Gates does, but he is evidence that it is possible there are people out there on the autism spectrum that can run a huge charitable organization and do it well; he has his own and it is a very successful charitable organization.

My comments on Autism Speaks and the future, are speculation that is somewhat reasonable considering the demographic trends of autism. Nowhere have I suggested that anyone financially support autism speaks, just provide constructive crticism to the organization to support those that are autistic that may benefit from improvements in the organization; specifically that autistic adults need more improvments from the organization.

I have specifically suggested that organizations that meet the personal support needs of those with Autism are the common sense ones to get involved with, like the Aspergers organization that Zeraeph mentioned in New England.

At least one individual here said they get more moral support on the Autism Speaks website than here, so I can't discount that there are some autistic people that go there for support and find what they are looking for.

Let me say it one more time and I will put in in bold for emphasis. The only action I suggest for Autistic people specifically in regard to Autism Speaks is to provide constructive criticism that may lead to improvements in the organizations efforts to help autistic people. That seems like what many autistic people have done so far, so I don't see anything significantly different that I am suggesting other than a tactful approach that leads to results.

Currently the ideology that John Elder Robison has expressed is that higher functioning autistic people shouldn't wait for the world to adapt to them, rather adapt to the world the best they can because time is passing by.

Meanwhile it doesn't hurt to try to influence the best outcomes possible. But, it is organizations like Autism Speaks that may have a major impact and influence on the outcomes of the future, so I think it's a good idea for autistic people to offer the organization constructive criticism as needed.

In running what I started I have two support workers. One has a degree that is partially having to do with business and the other teaching credentials and directing. Both make just above minim wage and one would make just minim wage to work with me and offered to. I also have a CPA and as far as filing I have help with that as well. I know left to my own I'd kind of fail at running it but that is why in opening a center I found qualified people. I am not qualified but I can write great speeches, do well with media and am very otherwise reclusive and quite rigid in what I do and where I go. That does not mean improvement is not possible. I think while I would personally fail running a large organization as a corporate CEO I instead have vision and motivation that inspires. What some people with autism are not good at the people without autism can help with. What is limiting now can change and I believe eventually I may be good with groups that are otherwise not part of a strict routine or even doing more social interaction randomly outside of routine. Nothing about what limits me prevents progress ultimately for certain unless I tell myself it's not possible to make happen even with help.

I can see however there are people far more disabled then I and I still think creating ability is not impracticable with the right support from society and by means of program design.

Aghogday, the attributions, to me personally, involved in your latest battalion of straw man arguments is so presumptive as to be outright offensive, please desist from the presumption...and while we are on the subject, John Elder Robison may have gained a little wieght recently for all I know, but I doubt if he has succeeded in qualifying as "many", and submission to Autism Speaks is not a recognised attribute of:

*Maturity
*Intelligence
*Fitness to govern
*Sexual Prowess (cos you are bound to try that one on sooner or later)

I do not care whether your are a blind fanatic, or the kind of third rate online PR consultant that Autism Speaks utter contempt for us as people dictates is all we deserve. Your actual argument has always been a very simple one:
We must accept, adapt and submit to Autism Speaks

That argument has no basis in fact, as a result, every single thing you have said on the subject amounts to an invalid premise for your argument. (the manipulative forms of argument you use in lieu of valid premise closely resemble the forms Jehovah's Witnesses are trained from adolescence to use - absent any factual support for their case).

We certainly do *NOT* have to accept, adapt and submit to *ANY* organisation, much less one that is consistently hostile to our best interests, and determinedly ignorant of our needs like "Autism Speaks".

What is more, I do not think we ever really will.

...and I do not think anyone had to have a clear view of how Germany should be run to condemn the Nazis outright, nor a fully formed idea of what religious faith should be to reject the "Children of God" sect.

There is no need to accept a bad thing just because we have not worked out what the optimal thing should be yet.

Autism Speaks is a vanity charity set up by two Grandparents which is now out of control, and determined to exercise invasive, dysfunctional control over every aspect of all of our lives, by hook or by crook, without even lip service to our wishes on the subject.

We would want to be either totally corrupt and well bribed, or completely off our heads, to support that now or ever.

I think you may be over imagining the reach of the organization in your life. They are not the government. They are also not a supernatural force intending to posses you. It is their style of advocacy for people that support it and for their goals. I am not member of it nor any other organization but a social service support system. I am not sure why you feel them to be such a great threat they will do something akin to destroying your life. It seems to me you have allot of unreasonable fears and beliefs about the organization with very little facts to prove the fantasy.

Ci, little bit of friendly advice:

I would leave trying to twist people's words until you have mastered the basics of communicating, save you looking quite such a twit...

However, for those of us who do our research out in the real world (rather than with our heads firmly stuffed in a part of our anatomy not designed to receive them), the reach of Autism Speaks useless and/or negative propaganda and influence is is not only disproportionate but a little bit scary.

A high proportion of Autism Speaks $55million budget is dedicated to "opinion making" and they have been throwing a lot of expertise into making unhelpful and downright wrong opinions all over the planet.

Not, I stress, on Aghogday's level, I mean serious expertise...

I have made no personal attacks on you only your statement that I see as a fallacious statement that autism speaks does no positive good for Autistic people that I have provided clear evidence that refutes that statement among your other opinions that I don't agree with.

And as I have stated clearly, I have no problem if it is your personal opinion, I refute it for others that may see a false statement that sounds like a statement of fact, so they will not be mislead by the statement that I have proven to be fallacious. In my opinion I stated it may be a rigid way of thinking, but you have expressed the same to me.

If you find that offensive, I will desist, but if that is your tolerance for offense, I now ask you to desist from personal attacks on me, continuing to suggest that I am part of the Autism Speaks organization as I am clearly telling you now for the third time, that I am not part of that organization for the third time. I have clearly stated time and time again that my only suggestion to autistic people is to provide constructive criticism to the organization for improvements that may make the lives better for autism people.

I have never suggested that anyone must have any association what so ever to Autism Speaks; I find it offensive that you continue to state that I have said that, so I ask to you know to disist from misrepresenting what I am saying when I have clearly identified my position that my only suggestion is that people provide constructive crticism to the organization. That's a suggestion, not a must.

Other than that it looks like you are giving a negative opinion of the organization, here, not stating things as fact that aren't true like the organization does nothing positive for autistic people. I see that as an improvement. And again, if that's just your opinion, while I think it is ridiculous, you have a right to it.

I think what you may be failing to grasp is I was simply doing what you were doing as far as twisting things up. It's a bit of an exaggeration to make a point. The point being if you make a monster out of someone or something that otherwise is not a monster it can be done to you. Autism Speaks has very certain specific focuses and is not the only organization names (condition) Speaks. They have a set mission and they do what they can to complete that mission. Outside of that mission if you want them to do more it's best to approach them in constructive manners. People view autism different and the conflict based on my observation comes down to three primary factors where applicable.

1. Anti-abortion rhetoric and this topics biased invasion.

2. Anti-agenda rhetoric like not viewing autism seriously for the sake of mainstream politics.

3. Autism as a person (autistic) vs. autism as a condition when people get the two confused or simply cannot separate the disability label portrayals focusing strictly on the disability aspects.

These are things I've thought about on my own as far as possibilities. I simply don't go along with Autism Speaks hates me simply because some others with autism want to cram that down my throat. I am a respectable person and if you want me to agree with you and others don't attack me for not agreeing with you, use facts and try not to make mountains out of mole hills to gain persuasions. I don't fall for the most people with autism or many people with autism do not like X,Y or Z organization or that I must because others do not like it or else I am a traitor. I'm an individual first and not a heard mind.

Ci, in fairness, if a fruitbat like you ever agreed with me, I would have to give serious consideration to jumping off a tall building for my own sake.

Aghogday, just FYI, the feedback I am getting is from people who can't understand why I don't have better things to do than stick around watching you play head games, rather badly...

It's hard for any reasonable person to agree with you if all you ever do is socially batter with negativity and represent the small but persistent opposition in such matters if persuasions are made with personal attacks at people unrelated to your specific goals. It's been the tact of some groups and entirely politically alienates themselves. Obviously I'm not the fruit bat just the nut case that has enough self-respect to think outside of the box and consider other intentions, agenda's and possibilities rather then just doing it to Autism Speaks which has gotten old and proven to be not very effective and at other times counter productive to your intents.