does autism speaks actually advocate for autism?

Autism Speaks Inc., founded in 2005 by Suzanne and Bob Wright for their grandson, is a non-profit organization for autism. The goal is to destigmatize and raise awareness of autism. It serves as a pillar of support for families struggling with the diagnosis.

However, if you look closer, most of their actions do the opposite. Autism Speaks is an incredibly problematic organization.

Before getting into the actions of Autism Speaks, one of the first problems deals with the logo, a puzzle piece. The puzzle piece was first used as a symbol in 1963 by the National Autism Society (UK). Autism Speaks adapted this into their logo. The usage of a puzzle piece depicts autistic individuals as ones with “a piece missing,” a concept that is hated by many in the autistic community. 

The idea that an individual should be “fixed” instead of accommodated is harmful because a majority of the time, “fixing” autistic people means forcing them to mask. Masking refers to when autistic people suppress behaviors and actions to fit in. Needless to say, the puzzle piece does not have positive connotations.

 On top of that, the symbol is intended to represent the fact they are searching for a cure. Autism Speaks was founded in the first place to find a “cure” for their grandson, with a large portion of the budget received going toward research. 

 The belief that autism is a disease or disorder that needs to be cured only perpetuates the idea that it is something that is negative and should be feared. 

Autism Speaks has played a huge part in fear-mongering over autism. In 2009, Autism Speaks released a commercial video titled, “I Am Autism”. The video begins with a voice narrating along with low, foreboding music. The video is incredibly alarming, portraying autism as something that steals children's voices, ruins marriages, and causes bankruptcy. All of those claims are from less than one minute into the video. The entire video lasts three minutes and 43 seconds. It was later deleted and issued with an apology, but autistic individuals are still rightfully upset.

Autism portrayed as something to be feared is nothing new. The release of the video only further stigmatizes what others believe about autism. Misinformation such as that only hinders acceptance.

Today, the website is set on advocacy and acceptance for autistic individuals, but that does not remove the original message that Autism Speaks sent out. The current mission statement on the website states, “Autism Speaks is dedicated to creating an inclusive world for all individuals with autism throughout their lifespan. We do this through advocacy, services, support, research, innovation, and advances in care for autistic individuals and their families.”

But from 2005 - 2015, the statement was a little different. “Autism Speaks is the world’s leading autism science and advocacy organization. It is dedicated to funding research into the cause, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorder; and advocating for the needs of individuals with autism and their families.” After 2015, the word “cure” has since been removed from the mission statement. Autism is a spectrum. One thing won’t “fix” all autistic people.

Autism Speaks also has a lack of autistic staff members. As of now, there are no autistic individuals out of 25 on its Board of Directors. Having autistic staff is both incredibly important for representation and understanding. 

They preach awareness, but that’s all. There’s little Autism Speaks is doing other than reminding the world that autistic people exist. Over half of the budget given goes toward “awareness” and lobbying, but a very small amount goes toward families. Autism to them is seen as an opportunity to be praised for “caring.” If there truly was care, more would be done. There wouldn’t just be awareness, but acceptance. Autistic individuals have to fight just to be seen as human, and that is done with almost no help from Autism Speaks.

While little has been done by Autism Speaks, that doesn’t mean nothing has been done. For example, Autism Speaks has increased the global understanding of what autism is. It’s still a very misunderstood disability. In the sum of 17 years, they have raised billions in funding for autism. Autism Speaks has also helped lower the age of diagnosis. 

Despite that, Autism Speaks still isn’t a wholly good organization. That doesn’t mean there aren’t any good ones out there, though. For example, consider donating to: 

• ASAN (Autistic Self Advocacy Network) 

• AWN Network (Autistic Women & Nonbinary Network)

• AIM (Autistic Inclusive Meets)

• A4A (Autistics For Autistics)

Those are just a few. All that’s needed is a little research to find the right organizations to support.

Not being able to donate is fine, advocating is still an option. Share the right organizations and spread the word about Autism Speaks. It’s a large organization, which means a lot of the controversy is hidden and unknown. 

On that note, instead of a puzzle piece, many autistics opt for an infinity symbol with rainbow colors, to show that neurodiversity is a spectrum. Both the rainbow and gold one can be used, the only difference being that the gold is specifically for autism.

There is definitely room to improve for Autism Speaks. A starting point would be to include more autistic staff.  Autism Awareness Month should include autistic people in leadership roles so that Autism Speaks isn’t an organization that speaks over them.