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ASPartOfMe
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07 May 2024, 10:52 am

Controversial Autism organization says they´ve changed

Quote:
Many people in the autistic community say Autism Speak is not a great organization to represent them but the organization says they have changed.

“Since Autism Speaks was founded in 2005, advances in research coupled with the lived experiences of autistic people have greatly evolved the world’s understanding of autism spectrum disorder (ASD). This has also transformed our organization, allowing us to learn and grow in our journey. We may not have always been perfect in our representation of autism. What it means for each person in our community, but we have taken steps to become more inclusive and represent the diversity of experiences of autistic people and their loved ones, while making significant strides in creating a world in which all autistic people can reach their full potential,” Said an Autism Speaks spokesperson. “The work we do is largely informed by and driven by those within the autistic community, including autistic individuals on our Board of Directors, in leadership positions, advisory committees and on the front lines of the services offered through our Autism Response Team.”

Many autistic people feel the puzzle piece symbol does not represent them and represents that they are missing a piece or need to be fixed. Even though Autism Speaks still uses it they say they changed their logo to be more inclusive.

“While we did adopt the puzzle symbol when we were founded, we have since transitioned from a blue-only puzzle piece to feature a spectrum of colors and be a better representation of inclusivity and optimism. We know there are people who dislike the symbol, but there are also many who embrace the puzzle piece and want to continue to see it associated with autism, as members of the autistic community have shared themselves.” Autism Speaks said.

Even though many studies show ABA therapy has led to PTSD, Autism Speaks advocates for the therapy because of the impact it has on improving social skills.

“We are advocates for ABA being implemented properly and individualized to each person’s needs, as studies have shown in these instances, ABA can lead to improvements in adaptive behavior, communication skills, social skills and a reduction in challenging behaviors,” the Autism Speaks spokesperson said. “We recognize, just as each person’s experience with autism is uniquely individual and personal, so are the supports they may need; as a result, we respect that everyone will have a different experience with ABA.”

Autism Speaks says not everyone is right for ABA therapy.

“Autism Speaks asserts ABA therapy may not be the most effective option for everyone, though it may be for some. ABA programs should be individualized to each person and are not a one-size-fits-all approach. The goals of ABA, which, if capable, the individual in ABA should be involved in determining, should aim to help each person work on skills that will allow them to become more independent and successful in the short-term, as well as in the future.” Autism Speaks said.


It is very curious that this reply appears only in a campus newspaper. I am not sure if this journalist is the only one to ask them these questions which would be a terrible failure of journalists to do their jobs.

The modification of the puzzle piece is a typical attempt to please both sides, that pleases almost no one.

The organization is not nearly the absolute horror it once was. Their advocacy for ABA remains a major stain on the organization. The “it’s not for everyone” is a pathetic attempt to distract from that they remain a key factor in maintaining ABA’s stranglehold on Autism therapies in America. I recognize that because ABA is a monopoly (in large part due to Autism Speaks) ending it immediately will cause a lot of harm. Nearly every product comes with a warning about possible side effects. Every Autism Speaks mention of ABA should come with a warning that ABA might cause PTSD. The time, effort, and money they put into ABA should be redirected towered research on therapies that are less, harmful, costly, and time consuming so claims about the effectiveness of alternative therapies changes from anecdotal to evidence based.

Speaking of the horror Autism Speaks once was “we were not perfect” just does not cut it. At the time not only did they not listen to Autistic critics in some cases they legally went after them. They should at minimum apologize for their actions at the time. I have always wondered why a class action suit has not been brought against them. Is it because the ND movement does not have enough money or there has been no defamation in a legal sense?


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BillyTree
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07 May 2024, 2:32 pm

I am far from an expert on Autism Speaks but from what I have heard, read and learned about them I find it hard to trust them when they say they have changed. As far as I know, their "skill training" seems to have a lot in common with how you domesticate a dog or a horse without asking said animal about the motive behind it's "unwanted" behaviour.
If they have changed then prove it by kicking out all non-autistics from the Board and change the name to Autism Speaks For Itself.


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JamesW
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08 May 2024, 4:24 pm

It reads like someone asked ChatGPT to write the worst apology it could on behalf of Autism Speaks.

This seems like a good place to (re)post a link to The Great Big ABA Opposition Resource List.



lostonearth35
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11 May 2024, 8:59 pm

Autism $peaks is so full of it.



King Kat 1
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12 Jun 2024, 11:00 am

If I am not mistaken, didn't they spread the whole vaccines cause autism conspiracy? Which if course is total BS but yet many people still believe it.

As far as the puzzle piece, what does changing the color do or achieve? Just dumb. Maybe it's time to 86 it already. The more I think about it, the more I don't like it. To me, it represents the whole idea of " you need to be rehabilitated" " you need to be fixed to act more normal". Same s--t I've heard all my life.

Apologies for rant.


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JamesW
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14 Jun 2024, 7:55 am

Every time I see the puzzle piece, in any colour, I call it out. A lot of organisations don't even realise. Misinformation travels far.