Autism Speaks - is it good or is it bad?

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I vote bad. The wanting-to-"cure"-autism thing is something that I can tolerate, just because they are focusing on getting low-functioning autistics a chance to live a life filled with better opportunities and outcomes. I am very for better treatments to bring LFA individuals up to an HFA/AS level. What I DON'T like about Autism Speaks are their "odds" advertisements, showing how 1:150 children will develop autism as opposed to 1:10,000,000 being an identical quadruplet, or some other such nonsense. They make it sound like 1:150 is shockingly high. Look at other neuropysch disorders- their odds are even higher. These "odds" campaigns are spreading the fear that autism is "rising" in the population, not bothering to educate people about better methods of diagnosis.
-OddDuckNash99-

I don't like them at all. They don't bring awareness - they do things like sponsor walks, or sell buttons and bumper stickers - which bring them money and make people feel good that they're "fighting autism," but do absolutely nothing to inform people as to what it is. Their explanation on their website as to the definition of autism is, "group of complex developmental brain disorders," then they go on to the autism epidemic scare-tactics, which, from what I understand, are mostly a result of better screening and more people being diagnosed with AS/HFA. It seems like most of their awareness is informing people that autism is some horrid disease that will invades your kid, will ruin your life and needs to be eliminated. No talk of what an autistic child may look like, or may experience, no talk about acceptance or tolerance.

The "cure" stuff is counter-productive in my opinion. We know autism is genetically complex - so this "cure" is highly unlikely - they could be spending their time and effort into looking into ways to make life for people with autism easier - but that apparently isn't a priority for them.

Autism Speaks is definitely not the only group doing research, nor is it the only game in town, much as it would like people to believe it is both. There are many other "games in town," even though Autism Speaks has tried its best to either take them over or run them out. There are also other groups doing research. In fact, Autism Speaks funds research that is not always its own research, so they can't be the only ones doing research. IAN and OAR are two organizations that come to mind immediately as organizations doing a great deal of research.

Putting aside the issue of whether you like the research Autism Speaks funds, and whether you consider their costs of doing business too high, there are many other things that people find unacceptable about how Autism Speaks has run its "business." Two of the foremost objections have been that it has usurped local fundraising efforts in many communities and taken those monies for long-term research efforts, while allocating little-to-no funds for local service provision. The same fundraising efforts used to fund local services, and communities are now left with a marked decrease in funding for services for individuals who need them, while all the money raised locally "disappears" into a black hole of research, which may be useful in the long term (or may not), but meanwhile, hundreds or thousands of children and families are desperate for help and are getting nothing. Their friends and families think they have done "their part" because they have participated in the walks and whatever else.

The other major point of conflict for many people is the insurance battles. Autism Speaks is proudly proclaiming victories all over the country for getting legislation passed so that autism related treatments would be covered by private insurance. Meanwhile, in state after state, Autism Speaks has cozied up to the insurance lobbies and helped pass legislation that has not only failed to help families with autistic children get additional coverage, but in many instances has hurt those families by reducing the actual coverage those children will receive. But because there was a bill passed that sounded like autism insurance, Autism Speaks was able to publicize that it "got a bill passed." Right now in NY, there is a situation where they have turned the clock back and reduced the coverage for autistic individuals, so that coverage that used to exist will no longer exist, and treatments that will be covered will have to have a level of medical recognition unknown or required for any other condition. The hoops families will have to jump through to get their children's services covered will be outrageous, and even the most obvious of services (OT, speech and language) will probably not have the level of medical support to warrant insurance coverage. The other bill, which the rest of the autism community in NY was supporting, has been left to languish, while Autism Speaks and the insurance lobby pushed for this bill which will do nothing for families and children, but will give Autism Speaks another "check off" in their column of states that passed a bill on their watch. Autism Speaks doesn't care whether they get a good bill passed or a terrible bill passed. Their goal is to pass a bill. A similar thing almost happened in Pennsylvania as well - Pennsylvania was very lucky. We were better organized and stronger against Autism Speaks here, and we had an amazing leader in our state legislator to prevent the Autism Speaks version of the bill from passing. There are some very good reasons why people don't like Autism Speaks.

Autism Speaks funds the research study I'm in at the U of Pitt. They're using Cognitive Enhancement Therapy (attention, memory, and problem solving training on the computer plus small groups to improve social cognition) to help adults with autism. One of the researchers told me that they do not seek to cure us but to make our lives easier. I don't think they'll rewire our brains in an 18-month study, but they're certainly not harming us and it just might do some good. Right now the study has 14 people as the pilot, but soon it will have I think 60, and that's the part the Autism Speaks is funding.

Just making a point that things aren't really so black and white, and as such, this organization is not all bad.

BAD. i have no respect for parents who only see their child disorder and or blame every behavior on the disorder. and lose hope for their child. i have no respect for organization that is working on catching in money for research just for prenatal testing cause all thats going to lead to people getting abortion every second. and what the hell are they doing to help people with autism that are alive. i have no respect for doctors who are quick to tell parents your child would never be able to do x y and z, i seen this said about me, and a lot of my family members.

i think that autism speak needs to shut up.

They apparently portray autism as a suffering for the parents, not speaking about what it is like to be autistic. At least not in videos like Autism Every Day or I Am Autism.
It's almost like it was the parents who should have a diagnosis as "parents-of-autistic-child".
I'm glad we don't have a similar movement where I live. (But the thought of "the parents' suffering" exists everywhere, sadly.)

I do not "like" or "dislike" them.

They have their reasons for doing what they do and it is NOT ALL about money, but you can't fund research on faith and love, so yes it IS about money at least in part. It has to be.

I don't buy into the genocide myth. No one who claims there is this agenda has provided one shred of proof or evidence of it, only claims. Any supposed evidence I've seen so far, is nothing but other claims, and not evidence at all.

I WILL say this though. There is a video posted here from the vice president of Autism Speaks (I think you can find it as a sticky post in the General forum). That video is a response to members here who don't feel that a cure for Autism is the right approach. The entire video, I think, gives a pretty fair summary of why they are seeking a cure. It gives their side.

But here's what I DO think is sad. They DO present Autism as if it's a plague, evil, and pretty much nothing good to say about it. The promotional, videos, and propaganda (because, let's face it, it IS propaganda!), never ever shows anyone with High Functioning Autism. Therefore, it does NOT provide a voice for those of us who CAN actually function and have something good to contribute to society.

Though members here, and elsewhere have been SCREAMING to be heard, Autism Speaks, instead of LISTENING to them, has been ignoring them, and making excuses for not showing a side of Autism that does exist, and helps promote general widespread misconceptions about Autism world-wide.

And THAT is inexcusable.

It's as if they have found mold in a section of the Taj Mahal, taken only pictures of that mold in one section of the complex, presented those pictures to the public, saying, "Look how ugly the Taj Mahal is.

Where are the pictures of the entire complex? Where are the beautiful rooms that are still useful? Where are the pictures of Gardens and wild life?

No, they are not showing the beautiful side of Autism at all. It is dark, foreboding, threatens families, marriages, and, according to them, nothing but evil.

THAT is why you're getting the reactions you are getting here. Is Autism Speaks, evil? I don't think they are, but neither is Autism!

Autism Speaks is misguided, at best.

They NEED to start listening to people here!

They may speak for those who cannot speak for themselves, but they do NOT speak for me, or most of the users here.

So "low functioning" autistic people are "mold" and "high functioning" autistic people are beautiful architecture!?

Besides, they use the 1:150 thing in their fundraising. And yet they turn around and say "we're only talking about low functioning people" when they get criticized by autistic people who <em>make up most of the 1:150</em>. And they perpetuate the myth that "low functioning" is an actual <em>thing</em> instead of a messed-up and outmoded construct.

Uh... no. I was afraid somebody might take it that way. It is not what I meant. But is is a pretty decent analogy to the way Autism Speaks present the picture of Autism. It isn't how I look at it.

Autism Speaks is nothing more than an organization whose agenda is to raise money with he hopes of finding some sort of clinical cure towards all autistic people in the world whereby making everyone normal and not have any troubles..

I think many people here are overly negative towards Autism Speaks. I don't think Autism Speaks is evil. And I don't think all of the negative stuff said about the organization here is justified.

But I don't like Autism Speaks, and this is why:

http://blog.autismspeaks.org/2010/05/29/itow_procor/

It's a blog post titled "In Their Own Words – I Have Autism". Title sounds like it's an autistic person telling their story. Reading it, at first it seems to be. But, continuing to read it, it just doesn't sound like something written by an autistic person. Then at the end: This “In Their Own Words” essay is written by Tonya Procor, a loving mother of a son with autism.

That on the Autism Speaks Official Blog.

I find that appalling. To title the essay "In Their Own Words – I Have Autism" when the words are those of a parent of a child with autism writing as if from the point of the child is disrespectful to those with autism. As is calling the organization "Autism Speaks" when it's an organization by and for parents of children with autism.

It's not that Autism Speaks is all bad. It's that there are some things about Autism Speaks that are very wrong.

P.S. I just realized that "In their Own Words" is part of a series, so... first half, series title, 2nd particular essay that happens to be fiction, but, unfortunately, doesn't indicate it is till afterwards. Still, an example of what's not to like about Autism Speaks.

The people at Autism Speaks are prime examples of the the worst kind of people that exist in the world today. They are putting money in their own pockets by purposefully telling lies and providing disinformation.

Personally, I find those to be awfully strong words, and not anything I would accuse them of without proof.

If it happens to be false, the above really amounts to slander. I'm not willing to agree with what you've said without some pretty powerful evidence.

I don't like some of what they do, but I stop far short of accusing them of lying and stealing.

But, I don't want to be normal. Normal is boring.

...and boring, when you some right down to it, really is evil!

They are the worst kind of of people that exist in the world today. They are not immoral, they are amoral. They are doing nothing illegal. They are not stealing, and the information they present are opinions not facts. My statement is not slanderous because what they present about my life is not true and therefore a lie. All they can do is claim ignorance or indifference about the way many autistic people feel about their portrayals of us.
I find amorality to be as evil as immorality. One is evil and the other is evils accomplice.