The Shocking History of Autism Speaks

(Photo courtesy of Autism Speaks’ website)

On the surface, charities are formed to make a difference. This one doesn’t.

There are a lot of horrible charities out there that actively harm others, whether it be for neglect of their purpose that hurts all parties involved, or supporting things that actively contradict their cause. Charities can have some horrible motives. 

Some of the more well known “bad” charities are “Kids Wish Network,” who are known for spending millions of dollars on advertising for their company, only to spend less than 300,000 dollars on their actual mission- granting kids’ wishes. 

Also terribly well known are the Reynold’s cancer charities, also known as the “sham charities” according to The Federal Trade Commission themselves back in 2016, while the charities founder “James T. Reynolds” wasn’t spending any of the money on raising awareness and helping people with cancer. Instead, using the money on his friends, family, and fundraisers for the charity itself. 

The aftermath of this were the two biggest of the four charities, Cancer Fund of America Inc. (CFA) and Cancer Support Services Inc. (CSS) were to shut down, and Reynold himself couldn’t profit from any non-profit organization in the U.S.

While these charities are just the tips of the iceberg for being considered “the worst” charities, there’s one with roots in scary ad campaigns, fear mongering, and torture methods to “cure” and “treat” their cause. 

This is Autism Speaks. 

For those unaware, Autism Speaks is a non-profit organization that is advertised as “the biggest autism advocacy network.” Maybe to a certain degree, yes. However, as autism acceptance has grown in more prominence, the actions of Autism Speaks have been coming under fire.

Most people know about their horrendous actions, but not a lot know about the formation of the organization, and surprisingly, they came from decent beginnings.

Autism Speaks was formed in 2005 by Bob and Susan Wright. When they first became grandparents for a child with autism, Bernie Marcus donated $25 million to help financially start the organization. 

However, this wasn’t a single effort. Autism Speaks merged with three other autism organizations to jumpstart theirs. Them being Autism Coalition for Research and Education (ACRE), the National Alliance for Autism Research (NAAR) and Cure Autism Now (CAN). 

Keep the last charity name in mind here, because it will come into play for a lot of Autism Speak’s advertising campaigns. Speaking of which, Autism Speaks spends a lot of its money on its ad campaigns and fundraising. 

According to ASAN (Autistic Self Advocacy Network), they’ve graphed all of Autism Speak’s budget, and where the money goes towards.  

(Photo taken from ASAN’s “Before donating to Autism Speaks” flier)

From what they have gathered, almost 50% of the money goes to awareness and lobbying, and less than 30% go to, well, everything else.  

The interesting part is that on the Autism Speaks website, they specifically talk about their “mission,”-especially considering family services. 

Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the lifespan, for the needs of individuals with autism and their families. We do this through advocacy and support; increasing understanding and acceptance of people with autism; and advancing research into causes and better interventions for autism spectrum disorder and related conditions.”                                                                                            

However, we can see from the graph that barely 1% goes to the family services. Instead, it mostly goes to “awareness,” and they often don’t even get that right, because how they spread awareness does more harm than good. 

An infamous method Autism Speaks uses to “spread awareness” about autism is through PSA’s and various advertisement campaigns. But yet, they’re infamous for the worst reasons. 

Take the “I am Autism” PSA from 2009. While Autism Speaks has dissociated from the PSA as of recent, there are countless reuploads of the video, and ASAN has made a transcript of the video as well. 

Such lines from the PSA include:

“I know where you live. And guess what? I live there too.”

“I work faster than pediatric aids, cancer, and diabetes combined.”

“And if you’re happily married, I will make sure that your marriage fails.”

“Your scientists don’t have the resources, and I relish their desperation. Your neighbors are happier to pretend that I don’t exist—of course, until it’s their child.”

“I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness.

I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up you will cry, wondering who will take care of my child after I die? And the truth is, I am still winning, and you are scared. And you should be.”

From the deep, unnerving voice to the over exaggerated language, this ad struck a nerve with a lot of people. Since then, Autism Speaks has shoved this video under the rug of sorts, and doesn’t openly acknowledge it anymore.

However, this isn’t the only thing Autism Speaks refuses to acknowledge. Remember the three other organizations Autism Speaks acquired during its first establishment? One of which was “Cure Autism Now,” or CAN.

Something to note is how Autism Speaks used to label Autism as not a “disorder,” or just a different way the brain is wired, but rather a disease that needs to be cured.

This thinking was one of the many reasons why people hated the I Am Autism ad- because it labeled autism like a horrific disease when it couldn’t be further from that. 

And sadly, they have endorsed certain things that could be quote on quote, “cures” for autism. One of which, being the results of many deaths of many neurodiverse children- shock therapy. 

In 2021, the Judge Rotenberg Education Center, known for using shock therapy to help with “aggressive and self harming behavior” came under fire for its practices being used to physically and psychologically damage their patients, specifically against their autistic patients.  

And sadly, it hasn’t ended pretty. A record of six kids have indeed died while in the Rotenberg Center. 

Worse, it only came under fire recently. It’s been an ongoing issue for a while, after they won a court case in 2018 that still allows them to continue their abusive practices. 

But how does this tie back with Autism Speaks?

Autism Speaks runs these events called “Walk Now For Autism,” which is used to fundraise for the charity’s services (or lack thereof given how they spend their money mostly on fundraising and not for their actual services). Oftentimes, they would have various partners for these walks.

And in 2018, the Judge Rotenberg Center was one of the services that Autism Speaks featured, in front of many family members and autistic people. 

When the story did even come out, people were shocked digging more into it. It dismantled the last remaining bits of credibility Autism Speaks had. 

Nowadays, people are now fully aware of the horrific damage Autism Speaks has and continues to do against the people they claim to “speak” for. However, with such a bad track record, you’d think they’d be one of the worst nonprofits out there.   

However that’s not exactly the case. 

If you dared to look into the worst charities the world has to offer, Autism Speaks doesn’t even make it to the top 50 of those lists. 

Charities such as “Kids Wish Network” and “Youth Development Fund” are top contenders in these lists, with claiming them (as of November 2022) as some of the top 50 worst charities. 

But with the horrific reputation Autism Speaks has gained for themselves, it really is a wonder how people aren’t recognizing their past, and continue supporting them, even with their budget having been made public, and have been proven to not actually help their cause. 

It could be because they are the biggest in their field- autism “awareness,” when it’s just fear mongering. However, are there any better charities to support?

ASAN has been a great source in not only bringing the scummy behaviors of Autism Speaks into the spotlight, but is a charity that actually helps the autistic community, with people on the spectrum themselves on their board. 

AWN (short for Autistic Women and Non-Binary Network) are specialized in helping autistic women and non binary people. They provide support for not just those on the autistic spectrum, but also those who are also in the LGBTQ+ community. has an article about the differences about different types of charities, both good and bad, so you know who to support. 

It really is important to make sure you know who to support. You don’t know who can have a horrible track record of fighting against their own cause, under the guise of it being of fighting for it.

However, you vote with your wallet. It’s your choice who to donate to, but make sure it’s really beneficial, but not just for you- for everybody you want to support and fight for.