Autism Speaks: Turning Around vs PR Tactic

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Article I read today.

What do you guys think?

Is Autism Speaks Turning Around or is it a Public Relations Tactic?

please link article idk what ur talking about

I did put the link. See the words that are smaller than the other ones? It's the last sentence (not the signature) on my first post.

It's PR. A token Aspie, easily out voted by the twentynine other members on the board.

I sttill don't see the link.

That story is a little over a year old, so it might be interesting to see if anything has changed with the organization, since Autistic John Elder Robison has become part of the organization.

It is still early to draw any final conclusions, however they recently redesigned their website and there is vast improvement in the resources available to autistic adults, compared to what was there in the past. The image of Autism there is now one of a very postive nature also. The resources for Autistic adults are under the family services section. One can check it out and judge for themselves here:

http://www.autismspeaks.org/

Here is a link to their Annual report for 2010. It provides a comprehsive listing of the goals that they have met to meet the mission as stated in the report. It also provides information on the organization as to where the funds they raise go.

http://www.autismspeaks.org/about-us

In a similar thread when presenting a poll option about 50 percent of the people that responded felt that the organization is moving in a positive direction to answer the criticism that has been voiced by Autistic people, and about 50 percent of the people that reponded see no change in the organization.

Regarding specific measurable changes in response to criticism of Autistic people, I see some positive direction, in the addition of John Elder Robison to the organization, a change in the marketing campaign away from the darker side of Autism, and a more positive image of Autism on their website.

Some of the other specific things I can think of here recently that you might not see in the 2010 annual report on their website, that have a potential of positive influence on future generations of Autistic people, and those with the condition now, is recent research funded by the organization on a group of 198 twins that suggest now that Autism is more greatly influenced by the Environment, than previous research had suggested with twins, which may eventually lead to the identification of environmental factors to reduce some of the more debilitating symptoms of Autism that some experience.

Some have been concerned about the pitfalls of a prenatal test, this research makes a reality of a prenatal, one that is much less likely now, with this new suggestion of a major role in environment on the development of the severely debilitating symptoms that can be associated with it.

Also, a research study that has led to a prescreening checklist for autistic children as young as age one, that parents can find and use free of charge online, and that physcians can use, in assistance of an early diagnoses, to provide early intervention and the ability for a child with developmental disabilities associated with autism to have the best potential life possible, with the help of that intervention.

Both of these research findings were presented as groundbreaking research in the media.

There have been many criticisms of Autism speaks in the past that still circulate on the internet that have been resolved. The Tshirt about censorship still circulates on the internet, although it has been clarified as a misunderstanding by the individual that first reported it several years ago.

We also still see criticism of some videos that Autism Speaks took off of their website years ago in reponse to criticism; we now see a change away from that darker marketing technique today.

I see more room for improvement in the organization. and that is where autistic people can have an impact on the organization. Identifiy the constructive improvements and let the organization know. It is possible additional improvements may result from that constructive criticism.

It is difficult for many Autistic people to raise the funds to support organizations that help other people with Autism; it is important that we provide our input to these organizations, it is the best support we can offer to make positive changes in the organizations for the good of everyone with Autism.

http://autisticsspeak.wordpress.com/2010/03/17/is-autism-speaks-turning-around/

The link is on the word "turning", and it is, of course a PR tactic every step of the way....a fairly inevitable one. As the voice of Autistic Adults grows louder it has got a lot trickier to explain our total exclusion from the ranks of any Autism Organisation...easier to take on a token autie...

The organization spent over 1.6 million dollars to provide financial assistance to autistic people, as provided in their annual report from 2010 on their website:

One improvement last year was a new grant program that provides funding to Summer Camps so financially disabled Autistic people can attend. These are all positive influences to Autistic people that benefit from these programs as listed in the quote below.

1.6 million dollars is a relatively small percentage of the total money that the organization takes in. If Autistic people believe that a greater percentage should be spent on this type of financial aid for Autistic people, that is a constructive suggestion to provide to the organization.

The link to the 2010 annual report provided in my previous post, is interesting information that details many other services that the organization provides, including interesting information about results from the research they funded in 2010, along with information on all the different organizations, public and private, that they work with to improve life for Autistic people.

Today was the first time, I had the time to really look through the report; the results of their efforts from 2010 to meet their mission were impressive from what I saw there.

I only determined that I have Asperger's within the past two months, but I have been learning about autism for years.

I am suspicious of all 'advocacy' groups as my default position, because I have found that 'advocacy' groups in many other areas tend to exist primarily for the purposes of their founders and only in a small way (if at all) for those they claim to advocate for. They often exist primarily to provide jobs, wealth, soapboxes, prestige, and power to a few, passing through as little as possible of contributions to the intended beneficiaries.

It is possible that I'll change my mind about some of the groups claiming to advocate for those of us with autism/Asperger's, but it will take several years of critical examination before any of them has a chance of becoming trusted by me.

So far, I am not impressed by Autism Speaks. I'll look at them in the next few years and see if they are doing any real good. In the meantime, I'll find my own way to help people.

Whoever is behind that blog seems to have some sort of axe to grind against this site, as well.

Two links:

Wrong Planet assist Autism Speaks in silencing autistic for satire (link)

Wrong Planet’s censorship defense (link)


Very strange, given that there must be at least 1,000 threads on this board all about how "Autism Speaks Sucks!," or "I Hate Autism Speaks," etc. In light of that easily proven fact, which anyone can check in about two seconds, I just don't see that allegation of censorship as having even the slightest relation to reality. Or that blog as one to waste any more time with, personally.

edit: goofed up the second link.

The T-shirt censorship issue is still posted all over the internet, and was recently posted here as fact, that was disputed and proven to be wrong.

There are indeed statements about the organization that have been presented here, disproven, and refused to be accepted as a fallacious statement by the individuals that expressed the statements. That is a sad situation because it only has the potential of hurting autistic people rather than helping them.

The stated intent of some is the elimination of the organization. While that's not going to happen, the worst that could happen is that someone that actually financially supported the organization withdrew their support as a result of the fallacious statements.

That is particularly sad, because while 1.6 million dollars donated in aid to autistic people is not a huge part of their revenue, potential lost dollars to the organization over fallacious statements are also potential lost dollars of direct aid that goes to autistic people, whether or not someone agrees with their research or awareness efforts that take up the majority share of the organizations funding.

I'm sure the organization sees it that way as well for the most part, in also seeing it sad, and for the most part, better left ignored, in hopes that we can come to reasonable conclusions on our own, identifying misrepresentations of the truth against the organization, and providing constructive criticism for the organization as needed.

At least that is what their new mission statement in bringing the autistic community together to support a joint effort suggests. I don't think they want any money from autistic people and understand for the most part that we don't have it to give, instead hoping for additional voices of support to make life better in the future for people with autism. Constructive Criticism and positive suggestions for the organization is part of that voice that we can all participate in whether or not we agree with all of the stated components of their mission.

But you don't want the autistic community "together to support a joint effort" do you? What you actually want is the autistic community together supporting "Autism Speaks" and giving you more power to do as you darn well please without the slightest regard for what Autistic people really need, and even, to a larger extent, going so far as to distort and misrepresent what autistic people really need and then strive to impose it upon them.

*POWER* is a far more potent drug than any amount of money (of which the founders of Autism Speaks already had an effectively, unlimited supply).

My only suggestion of support to anyone here, as clearly stated in my quote, that you present in this post, is to provide constructive criticism to the organization, to improve it, if they care to. I see that as support that may potentially improve the lives of autistic people.

I am not part of the Autism Speaks organization or any other organization.

You on the other hand have categorically stated the organization does nothing positive for Autistic people, while it is clear and evidenced that they have provided 1.6 million dollars of aid to Autistic people. Do you accept that 1.6 million dollars of aid as a small part of the revenue that Autism Speaks brings in, is a positive action that influences the lives of some autistic people? If it is your personal opinion that an opportunity for a financially disabled Autistic child to receive a scholarship from the organization is not a positive action provided by the Autism Speaks organization, you have a right to the opinion for yourself, but not for the child that is receiving that positive benefit from the organization.

My only significant disagreement with you, is that you categorically have stated that the organization does nothing positive for Autistic people. If you express it as a personal opinion that's fine, but stating it as fact as it applies to autistic people is not fair to the autistic child that is enjoying themselves in the Summer Camp as a result of a positive action of the Autism Speaks organization. I present the facts to refute your statement in support of that financially disabled child that has the opportunity to go to Summer camp.

And it's not to suggest that the organization will not benefit from improvements, otherwise I wouldn't be suggesting that people provide the organization constructive criticism that may lead to more Autistic people receiving benefits, like the scholarships for Summer Camp that are part of the new program instituted last year by Autism Speaks.


This has nothing to do with whether or not the organization is turning around based on the criticisms of Autistic people. That's a subjective decision for each individual to make, depending on their own personal criticisms of the organization.

Whatever...but it would become very hard indeed to explain why you indulge in so much convoluted and manipulative waffle on their behalf otherwise, wouldn't it?

As stated before, I have Autism, and have a difficult time in expressing words in concise terms. Sorry, if I don't have your communication skills. They are different, not the same, among people that have autism. I had a developmental delay in communication, that has created challenge for me my entire life. I think you mentioned you had dyslexia, I have what some people state is an opposite condition called hyperlexia.

I had a child that was severely disabled that had Autism; as stated before that is where part of my motivation comes from to morally support the actions of organizations that I see as positive in the lives of Autistic people. If you haven't experienced that you can't possibly fully understand what it means. I don't financially support any Autistic organization, and certainly wouldn't expect anyone else to.

The voices that I see that count are the voices that lead to the specific improvement in lives of Autistic people. If people here can provide constructive criticism to any organization, that may lead to better lives for autistic people, that is a positive benefit, and one that requires no financial support.

I don't agree with everything Autism Speaks does, but I do see it as unfair to the children that do receive direct benefits, however insignificant you may personally see them, as part of an organization that does nothing positive for Autistic people. And, again holding that opinion for yourself is fine, but it's not fair to the Autistic people that do receive the benefits to categorically state it as fact, when some autistic people are receiving measurable positive benefits from the organization.

It is very possible that some of these children that have attended the Summer Camps provided by Autism Speaks are reading some of the statements that you have presented here that Autism speaks does nothing positive for Autistic people, and that you want to see the organization shut down and go away.

The next time you categorically state that the organization does nothing positive for Autistic people as fact, try to consider those autistic children first, before you state that, if you care to. I could care less about your efforts to denigrate me, but I will correct what I see as misrepresentations of the truth, I'm nearing the end of my life, those children are just beginning theirs.