"Autism Speaks" Response to Autistic Input

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Be fair, *wall to wall* malapropisms are not entirely without merit in their own right (if someone has the patience to count we may even have something for the guiness book of records soon)...just in terms of this discussion.

Each side does it to one another. I've stated my goal was to neutralize it. Rationalizing tends to create mutual understanding. Avoidance of comprehensive understanding tends to be popular with individuals of some agenda's. I can however talk to some parents in greate detail about such issues but having autism myself I can figure out in detail why I would be offended at certain things potentially. It's part of the maturity process I have gone through as an individual as well on certain issues.

I forgot to mention... if you want to look at the accounts of a non-profit that actually DOES things for autistics... have a gander at the NAS: http://www.nas.org.uk
accounts: http://preview.tinyurl.com/CCNASTAR

Though streets ahead of "Autism Speaks" no denying it, far more up to date with their filed accounts, less perfidious and subject to far more independent regulation which is all genuine good...

It would appear that what they do with autistic input (the topic of this thread) is play that time honoured British game called "silly b*ggers" (that came straight from the horses mouth) and they are so hung up on politick (both internal and external) as to be morally paraplegic. A lot of British Autism (and other) politics is currently at a phase the resembles a Kafkaesque nightmare, where nothing is ever what it seems, and you can scratch the surface to a depth of two miles and STILL find hidden agenda that make your hair stand on end.

I have no hesitation in sending people to the NAS site or helplines for basic information...but as far as any involvement with them is concerned - not if I were dragged in chains...

I prefer these guys http://www.aane.org/ ...I have never even checked their accounts...BECAUSE...as soon as you start running checks on their consultants (professionals and others) and executive officers you start to realise that a significant number of them are, in fact, on the spectrum, which sorta explains why the site talks so much common sense.

(PS thank you - Thank You - THANK YOU for giving me the link to a place where I can finally play "check that charity" uk )

That is the U.K. So in the United States there is the ASA. They again seem to embrace more of the whole diversity of idea in autism concept. I am not sure that they are a research organization exactly.

http://www.autism-society.org/about-us/

Autism Speaks forever will be least in my expectation an organization derived of zealous worry with an origination of frantic calling. I still though don't quite find it offensive like some others do. The ideas of autism is a disease and epidemic don't exactly bother me unless someone goes up to me and says your a disease and epidemic which I'd only expect from someone who disagrees with them toward anyone with autism that might not harshly oppose them. In idea iti s my belief to take any established organization as it is and work with them so to derive the best potential outcomes from their works to improve lives. Seeking to destroy organizations doesn't exactly do that.

What a BRILLIANT title for a "Moody Blues" revival album...

The organization provides more details on the website, including specific information on the camps in the following quote and in additional information on the specific camps at the link I will provide in this post. All the issues and concerns that have been brought up here about the camps are fully addressed on Autism Speaks website.

I have already provided information that the amount of money provided as financial aid to Autistic people is a small percentage compared to the revenue taken in by Autism Speaks. My point is, however small, it is a positive influence for some autistic children. That is my assertion here.

If one categorically states that this program is of no positive benefit to the autistic people that are part of the program, in my opinion, that is not fair to the children that do receive benefits from the program.

I've only come across a few people that assert that Autism Speaks does nothing positive for Autistic people, I could just ignore it as a mean spirited comment, but I won't because in my opinion it shows disrespect to the Autistic people that do benefit from the resources the program provides, regardless if it's 2,000 kids or 200 kids.

I have no problem with the opinion that it's not enough, and they should do more; that seems reasonable to me, and an area of constructive criticism that should be provided to the organization, if one would like to see improvement ini this area.

http://www.autismspeaks.org/family-services/grants/baker-summer-camp-program/baker-summer-camp-grants-2010



If you go to this link, cost and descriptions of the camps are listed in the direct links to the camps. It is obvious that much care and attention has been used, to ensure an optimal experience for the children selected to go to these camps.

http://www.autismspeaks.org/family-services/grants/baker-summer-camp-program/baker-summer-camp-grants-2010

I provided the link and summary quote on services provided by Autism Speaks that described the disadvantage as a financial one. I didn't realize I left the financial adjective, in my brief redescription, until you pointed it out. If you think that is a problem I can certainly add it in, but otherwise I'll take your clarification from my original post, if one did not care to look back at the original quote for further details, and you see this as a problem.

I highly recommend reading this article in the most recent Disability Studies Quarterly: "Infantalizing Autism" by Jennifer Stevenson, Bev Harp, and Morton Ann Gernsbacher

This article explains the damaging consequences of representing autism only as a condition affecting children and touches on many of the issues being discussed in this thread. The authors did a systemic study of the images on the websites of major organizations, including Autism Speaks. There is also a useful chart which has figures for annual revenues for major autism organizations. If you're wondering "why focus on Autism Speaks?" your answer is here. The answer is: because they are earning way more money than all other "major" autism organizations combined!

Lau's numbers demonstrate pretty clearly that the "programs" grants financed by Autism Speaks are extremely insubstantial in the grand scheme of things. Consistently copying and pasting Autism Speaks propaganda won't make this program any more significant.

I think there is some truth to the ideas of the opinions put forth. However at the same time if I said I will commit suicide if you don't agree with me and what I wanted resulted in less emphasis on another persons human rights to treatment research funding that then evades their human rights. At the center of this is the public who is either conditioned and or instinctively driven to respond to certain depictions that then support the human rights of other individuals who each have their own views of how to view autism and in relation to themselves. It can be argued which I did not want to mention to easily that more positive projections of autism may result in improved outcomes reducing costs. In the hardened reality of all these politics it comes down to the costs of autism. In the raw reality improving the cost situations can come with both positiveness and potential effective treatment which requires a depth of research to understand just what it is. All of which in what I'd assume as the combating autism rationale beyond quality of life of people with it is the cost effects of autism in society.

I've consistently stated that the direct aid to autistic people is a low percentage of the revenue they take in. But have also, tried to explain why the mainstay of their effort in research is seen as a pressing need by the government and those who fund the program.

The 1.6 million dollars may be a small amount in relation to the other portions of their mission, however the organization, as stated in their mission statement, does not exist to provide direct financial aid to autistic people.

By in large, the government and taxpayers provide that assistance.

My only assertion regarding the 1.6 million dollars that I have repeated several times is that it is a positive action that helps some autistic people. More would be nice, an avenue of suggestion there, that may be acted upon as the parents that have supported the group find their children turning into adults and needing assistance in the adult world.

I agree with the research you presented; the first information that I heard about autism, that had any impact on me, growing up was Rainman. It was an extremely rare condition before the inclusion of the Aspergers diagnosis in the 90's. 1 in 10,000 diagnoses, so it's no wonder it didn't get into the media, until some influential people starting having kids with autism.

Autism Speaks started on the shoulders of a 25 million dollar donation from one individual. Influence pays for a lot when it comes to charitable organizations, but it influences the missions as well.

The problem lies with those that fund the organizations. The organizations answer to those peoples needs, and up until this point the dollars have been coming in from people to support the concerns of parents with children with autism. Research for prevention, treatment, and a cure, are elements that the parents that provide funding and the government agree are pressing needs.

The government is the only resource that can come close to providing the financial needs of permanently disabled autistic people.

Realistically, from a mathematical, demographic, and economic standpoint, at some point the government is not going to be able to provide the assistance either, so while it may seem as cold reality, research for prevention, treatment, and a cure, may be the only chance that future generations of permanently disabled autistic people may have to survive.

There is now, though. a crisis that is becoming noticed as the children of the same parents that have supported autism speaks reach adult age. That's where the money comes from that funds non-profit organizations, so more emphasis may be placed on financial aid for adults in the future, in many of these non-profit organizations that have been supported by parents and families of autistic children.

It seems like now is the time, more than ever that these organizations need input from people that financial aid for support for Autistic adults is important and a necessary pressing need.

I think more than anything, changing demographics of children reaching adult age and concerns for their future from the parents that have provided support to many of these organizations, may change the portrayal of autism in the future and result in changes in mission statements of some of these organizations.

The organizations will not likely significantly change until those that financially support them see and express a need for a mission statement that provides that direct financial support over the current missions that are supported. I see possible areas of change coming in the future, but that is just my opinion.

It seems like the report you stated reflects my opinion as well, and acknowledges the problem I have identified in this thread of the hundreds of thousands of autistic children over the next decade entering the adult world that will need support. In fact, they put the number at 500,000, in the US, in the next 15 years, as referenced from research in 2009.

Quote from the conclusion of the report you presented:

Last edited by aghogday on 16 Aug 2011, 5:07 pm, edited 1 time in total.

Just a note on the AANE organization, I like the organization as well, and wish similiar ones were available to support people with Aspergers in my area. Of note, is that the organization's administration and fund raising percentges of total revenue taken in is exactly the same as Autism speaks, 31%. Revenue spent on program and services is 69% as it is for Autism Speaks.

The difference is they don't provide funding for research and provide a much higher percentage of their revenue for services for people with Aspergers, which I see is a good thing; it meets that particular oranization's stated mission goals.

However, you seem to think that 31% of revenue spent on fundraising and administration costs is a problem with Autism Speaks. Is this also a problem with AANE? It seems this organization too is in alignment with the norm of other non-profit organizations, regarding percentage of administration/fundraising expenses to general revenue.

On which planet does a couple of million (depending on how you add it up) constitute "69%" of $55million?

Oh and there is the minor, insignificant fact of AANE having such a high proportion of staff and consultants on the autism spectrum, and "Autism Speaks" having John Elder Robison as a token.

More diversity employed the better.

Hi lau,

I find it a bit unfair to compare the first year of a new program with the overall need. Yes, the need is larger, but working things out takes time, and a lot more work than just cutting checks. Then there is the follow up, what were the problems and benefits? How can this become better, larger, calls for a lot of study of what happened.

Sending kids to camp is part of the research project, questionairs about what was enjoyed, what was not, gives a guide to what type of camp best fits autistic children. This is just a test, work out the problems first on a small scale, then grow the program based on feedback.

Some will come from autistics, some from the camps, and guidlines will develop.

It was a few but where do you find people willing to deal with a whole camp of children during Autism Week? This was about six per camp, and that spread over a summer, so perhaps one at a time.

When people are moving in the right direction, we cheer them on. The view that nothing you do is good enough, reminds me of my mother.

Camps for children are being researched to see how they benefit autistic children, not as a payoff for those who complain. The grants were for low income families, but many more can pay their own way and want to know what the best camp experiance is.

Autism Speaks does research into quality of life issues. Many people have questions, this is just a research on behalf of parents who have asked, what camp would be best for my child?

There are many issues to study before rounding up all autistics and confining them in permanant camps.

Here is the whole sentence from my post:



The numbers are available on AANE's website, and also available through the same guidstar organization, that you used to find out details on the expenses of autism speaks.

Programs and services as a percentage of total revenue must meet at least 65% of revenue to meet BBB standards. Both AANE and Autism Speaks have a 69% percentage of total revenue taken in for programs and services, and 31% revenue for Administration and fundraising.

As already stated research is not part of the programs and services of AANE, whereas that is a critical aspect of Autism Speaks mission, and the majority percentage of program and services expenditures at about $21 million dollars. Other programs and services equate out to about $15 million dollars, of which direct financial aid to autistic people is 1.6 million dollars or less than 4 percent.

Your issue was with the percentage of administration and expenses of total revenue taken in by Autism Speaks as well; again the percentages of total revenue for AANE are the same for administration and fundraising expenses: 39%, so if you are satisfied that these percentages are fair with AANE, they should be fair with Autism Speaks as well.

You have also clearly stated that Autistic people don't do well in groups of people, which I agree is sometimes the case but not always the case. Autism Speaks is a huge organization that requires social interaction among hundreds of people to administrate; is the board of an organization like this a place that autistic people would be comfortable in?

This issue was brought up by Kfisherx in another discussion on the subject. Why is it a problem with Summer Camp and not a problem with an organization that interacts socially with representatives from the country as a whole. It is more than twenty times the size of the AANE organization.

It's likely that much less social interaction is required in an organization as small as the AANE organization and other small advocate organizations, as compared to the huge Autism Speak's organization.

Have you ever considered this aspect of it? The social interaction in groups of people is required to raise funds, and make decisions, there is no way to avoid it in an organization the size of Autism Speaks.

Do you think many Autistic People would want a job like that? Autism Speaks certainly can't make any qualified Autistic individual take the job against their will, can they?

And again, the experience required in running an organization the size of Autism Speaks is years of experience in interacating with the general public, and specialized education. It's not nearly the same kind of organization as a small ASAN chapter, or small regional groups that focus only on a narrow area of programs and services.

I think that there are probably some people on the spectrum that could qualify, but since you don't seem to believe that Autistic people can even tolerate a one week long summer camp together with other autistic people, I'm not sure where you make the personal jump to running a multimillion dollar charity, that requires almost constant interaction among different groups of people from the entire country.

I listen to your criticisms but they seem tailored significantly different depending on if it is an organization you support or don't support.

I think AANE and Autism Speaks both serve the purpose of meeting their mission. That is what their contributors expect, and who they answer to as organizations. If Autism Speaks dropped their research at this point of time, they would lose that segment of support that funds it as a pressing need. The view that it is a pressing need would remain the same, and the funding would simply be provided to another organziation that researches autism.

But Autism Speaks do not spend it on "programs and services" do they...just on largely unspecified "research".