How To Support Good Autism Activism

Spring is here! ‘Tis the season for finals and florals, storms and sprouts, Astepro and activism. April also officially rings in Autism Awareness Month (AAW), which itself brings both amazing opportunities for advocacy, but also an intense lack of information and understanding. This is the month where social media and brands become flooded with puzzle pieces, blue motifs, and quotes from Autism Speaks, the nation’s forefront “autism advocacy and support” foundation. 

You may be asking, Jo, why the sarcastic quotation marks? Autism Speaks so many things for the autistic community, you should be thankful for all their work! To that I say… Well, I want to say much meaner things but instead I will say this: Autism Speaks is not what most people think it is.

In honor of AAW, I want to take this moment to inform people on just why Autism Speaks is a terrible source for autism advocacy, despite the many misconceptions about who they are and what they stand for. Autism Speaks wants us to “light it up blue” for AAW, but here’s why we (#actuallyautistic people) say #RedInstead! 

What is Autism Speaks?

Autism Speaks was founded by a (neurotypical) couple, Bob and Suzanne Wright, after their grandson was diagnosed with autism. They were inspired by his story to launch an advocacy organization that helped people with autism as well as those with autistic relatives find the resources they need. 

What’s wrong with Autism Speaks?

Similarly to ABA ideals, Autism Speaks focuses on “fixing” autistic individuals. Meaning, instead of focusing on how to help neurodivergent people navigate an inaccessible world, they are focused on changing the neurodivergent behavior into something more acceptable. Many of their funds go towards research that is attempting to solve something that isn’t a problem. AKA: autism. 

Only 4% of their budget actually goes towards family grants, 22% goes towards fundraising efforts (meaning events), and the rest is presumably pocketed by the CEO (there being no proof of any other funds going towards advocacy work). In fact, one of their biggest sponsored research efforts was attempting to find a way to complete a prenatal autism test (similar to ones that can detect Down Syndrome). This research, while not inherently negative, was done with the intent to let parents know when their child could be autistic so they could choose to no longer have the child. Eugenics aside, it is obvious what their priorities are. 

But why?

One of the biggest reasons that I refuse to support Autism Speaks is the fact that their entire board and all corporate members of the organization are all neurotypical. Not a single person with autism makes any decisions in their company. This completely disregards most of my ideals of practicing Own Voice activism, hence my great disdain for Autism Speaks as a whole. I truly believe to be a responsible and ethical organization, you must be representing those you claim to support properly. And it is also my belief that to do that properly, they must have a decision-making voice that is heard and honored. 

What is #RedInstead? 

Red Instead is a movement that a group of autistic individuals began and that most of the community continue to support instead of Autism Speaks’ Light It Up Blue campaign. The color blue signifies sadness and depression surrounding our disorder, while red represents passion and excitement for what makes us different. Many other autistic networks and organizations raise awareness through #RedInstead, to show the world that autism does not need to be cured, we do not need to feel blue about our uniqueness, and that autism does not need a cure. 

Who should we support? 

There are many awesome organizations and foundations that do great advocacy for autistic individuals and their supporters. You can find a pretty comprehensive list here, but I would like to call out a few of my personal favorites. 

I’ve spoken about them before (and they’re included in my resources page) but Embrace Autism is a fantastic website and organization that does great research into Autism Spectrum Disorder. What’s even better? Embrace Autism was founded by two autistic individuals and most of their research is done by autistic academics! 

Autistic Self Advocacy Network is another fantastic organization who prides themselves on being “for autistic people, by autistic people.” That’s what I like to hear! They provide scholarships for autistic people pursuing further education, host events that encourage and teach autistic people how to self-advocate in the real world, and create safe virtual spaces for autistic teenagers. They do a lot of great work and are just a great resource for autistic people in college. 

Autistic Women and Nonbinary Network is one that is close to home for me. As someone who was raised and socialized as a woman but who, as a result of my autism, identifies as nonbinary, I love this network. They provide support for all autistic minorities, but especially focus on resources for LGBTQ autistic individuals. They help through networking, hosting social gatherings like picnics, throwing autism acceptance events, and holding book readings. They are a really awesome organization if something like intersectionality is important to you (like it is to me). 

How can I be an advocate for my autism/autistic friends/autistic family? 

As a goodbye to this somewhat rant-y, long-winded post, I would love to answer how you can be a better advocate. Whether it be for yourself or a loved one, advocacy is necessary if we want to change this world to be more successful for all. When you show support for a charity like Autism Speaks, you are supporting a system that wants to eradicate us and change us. Choosing to support other networks and organizations is a way to show your support in a more effective way. Something that is also a nice change to your perspective is seeing April as Autism Acceptance Month.

Please comment your favorite organization that relates to your personal experiences. It doesn’t have to be autism related, just any charity or network that you feel represents what you stand for! I hope that you found this article helpful and informative on why you might be seeing #RedInstead around the Internet this April. Stay kind, and keep cooking friends.