Disclaimer: we are in no way are sending hate to anyone at the organization. We recognize that this article may offend some we knew from Autism Speaks, but that is not our intent.
Trigger Warning: The topic of Autism Speaks may be triggering for some readers. If this topic triggers you, this article is not for you.
For the sake of full transparency, we are publishing this article to answer questions we received. We are asked repeatedly why we worked with Autism Speaks and if we support their mission. Therefore, this article will serve as our response to any inquiring minds.
In 2019, we signed on to be volunteer advocacy ambassadors for Autism Speaks. It was a decision we made after reading about the opportunity to advocate at a legislative level. At that time we researched as much as possible about the organization and the controversy surrounding it. We determined that the organization had made a shift in its mission and changes that truly embodied what we believed at the time to be a positive viewpoint of autism.
Throughout our time at the organization, we had positive experiences with the staff. We want to be clear that this is not intended to send any hate towards individuals that are still affiliated with Autism Speaks.
In the beginning, we made a difference by persuading legislators in our city to support autism initiatives. The legislator that we were assigned to during our time at Autism Speaks was not disability friendly nor neurodiverse friendly. It was a big win when they signed autism funding bills and were responsive regarding issues in the community around disability.
We contributed guest blogs and we do not regret it. We shared our autistic views without censorship. We do not regret spending two years working with legislators in our city. The work we did matter and Autism Speaks was the stepping block for some changes in our community.
The Catalyst that Changed Our Mind
We immersed ourselves in the autistic community.
This was not always a positive experience and we were harassed online and in-person for being affiliated with Autism Speaks. We begin to dive into why….why were we a target when the work we were doing was positive?
We extensively researched the history of the autistic community's relationship with Autism Speaks. Also, we spoke with other advocates and neurodiverse individuals to hear their perspectives. In the end, we found credibility in their argument. We took time for self-reflection and decided that our viewpoint must shift.
Therefore, we felt it was necessary to make a statement of where we stand with Autism Speaks.
We left Autism Speaks in March of this year. We were receiving online harassment from anti-Autism Speaks individuals. Let us be clear, harassing people online is not a way to open their eyes to your truth. It causes harm to your victims. The only way to make change is to educate yourself about what an organization stands for and make your choice.
We determined we cannot support Autism Speaks because it does not align with our values as autistics.
We do not support the methods of applied behavior analysis (ABA) therapy.
Physical and emotional harm is experienced by young autistics through the use of ABA. Often, abuses occur during these therapies that leave autistic children in dangerous and traumatizing situations. We cannot support an entity that supports the use of oppressive therapies like ABA.
Research on the autism spectrum is important.
However, we do not support the idea that autism is a problem, affliction or that autism needs to be fixed. Even though Autism Speaks mission does not directly state that they want to cure autism…
Actions speak louder than words and through our research, we determine that the support of any behavioral modification therapies and ignoring the voices of the autistic community is problematic.
They have a platform but speak for us, not with us.
The Autism Speaks message does not embody the voices of autistic individuals. The autistic community is asking to be heard on topics like support, terminology, branding of the organization, and the issues with ABA therapy. Nevertheless, the millions of voices go unheard. As an organization, they are not acting as autistic allies.
A Plea for Change
Let us be clear, Autism Speaks does make a difference. Especially on the legislative level. As persons that experience unavailable resources, lack of awareness, and minimal support being autistic, we believe that advocacy at a legislative level is vital. However...
Autistic voices must be heard.
When an entire community is saying please change your terminology, branding, and actions to show you truly support the community….please listen.
Autism Acceptance versus Autism Awareness, remove the puzzle piece and make the colors inclusive of everyone on the spectrum. Make the effort to show that you stand with the community as allies.
Do not continue to drown out the voices of the people you are trying to support.
We urge you to make the change and listen to autistic voices. Start working as an ally towards acceptance of autism with the autism community leading you.
Next steps for our readers
Take some time to support the autistic community by listening to the many perspectives in the community. Here are some bloggers, advocates, speakers, trainers, authors, and more to follow!