Odds are, we all know at least one person that is autistic. Currently, the CDC suggests that 1 in every 68 children are diagnosed with autism. These are just diagnosed cases, as autism is one of the most under-diagnosed disorders for women in the US, not to mention all of the undiagnosed cases in adults. Bearing all that in mind, many of us probably want to help our autistic friends, family, or even just our peers, and many of us believe the best way to do that is to donate to charity. This is all well and good, but it's always important to keep track of what the charities real intentions are, and what they practice.
One of the most popular charities for autism is Autism Speaks. Now, for many people, at least with the people I know, the mention of that charity usually results in a cringe or a sneer or just downright disdain. Why? What about this charity could possibly be so bad? They help kids and their families, right? Right? Wrong.
Let's start out small and work our way up. One of the first things about Autism Speaks that you should know is that they don't have a single autistic person on their board of directors. Not one! How do they expect to be a representative for autism when there aren't any actual autistic people to help with the representing?
Mental Health Advocate Gabrielle Hymel has spoken out about Autism Speaks and says the following about their lack of representation:
"A common misfortune in mental health advocacy, and activism in general, is the removal of autonomy from the affected voices. The lack of representation of autism in the executive board of Autism Speaks establishes the message that autism is a burden, and autistic people are to be seen as victims of a disease as opposed to champions of neurodiversity."
The next thing you should know about Autism Speaks is that instead of accepting and promoting neurodiversity, they treat it as though it's a problem that needs to be cured. There's a problem here: you can't cure autism. The best and only thing you can do is to teach the family how to communicate with their children (especially if they're non-verbal) and how to make sure their children are the most successful they can be and reach their full potential.
Autism Speaks treats autism like it's a disaster, like it will completely ruin the lives of the child and everyone involved. In a video called Autism Every Day, Autism Speaks had no problem allowing one of their board members to go on camera and admit that she had a desire to kill her child when she realized that she'd never be able to send her to a normal school. In order to raise money, Autism Speaks often attempts to use sympathy and fear-mongering to get support for their organization. They never put autism in a good light, and often even paint the children as terribly misbehaved and impossible to control.
Autism Speaks also sure does love to call itself a charity, but in 2010, only 4% of their budget went to helping autistic children and their families. Most of their budget did go into "research" (you know, finding a cure) but there's one slight problem there: not only does Autism not need a cure (remember, supporting diversity?) but... you can't cure it. It's a developmental disorder. A person with autism just has a different brain than you. The only thing you can do about that is to accept it and move on.
Further, Autism Speaks "research" revolves heavily on finding ways to do pre-natal tests for Autism and even trying to identify the gene that causes it. This does nothing to help families right now. This does nothing to help get kids that already exist the help and support they not only need, but deserve.
Autism Speaks is smart, though, as they target everything to the parents. If we keep the parents scared and ignorant, then they're going to support Autism Speaks more than their own child. They'll see Autism Speaks as the champion, rather than the children with autism themselves. They often highlight how expensive autism is in order to make it seem like a national pandemic instead of just another way of developing.
So, what do we do now? What can we do to show our distaste for Autism Speaks? Well, there are a few things:
1. We can stop supporting (or at least lessen our support) of organizations that give money to Autism Speaks.
This includes companies like Game Stop, Dollar General, The Home Depot, Lindt Chocolate, Gap, Activision, Mazda, Toyota, White Castle, Build a Bear, Toys R Us, Scentsy, and the sorority Alpha Xi Delta. That's right. Last time you bought something from your "Fuzzie" friend's last fundraiser, you supported Autism Speaks. You can find these organizations on Autism Speaks Website, and from the other sources included in this article.
2. We can donate to charities for autistic people that actually help autistic people.
There are many charities out there that are great at what they do. These include Autistic Self Advocacy Network, Autism Network International, Autism Women's Network, Autism National Committee, ADAPT, TASH, and The Golden Hat Foundation.
3. We can speak out.
Autism Speaks is the #1 most-donated-to charity for autism. People don't know about what this charity does. If we want to step up and stand with our autistic friends, family, and peers, we need to not be afraid to let people know what Autism Speaks does and what companies support them.
It's time to change the way we see Autism. It's time to change the way we talk about neurodiverse individuals. It's time to start listening to autistic people, instead of listening to an organization that's trying to erase them.
Sequenza, Amy. Autism Womens Network, 19 Aug. 2017, autismwomensnetwork.org/is-autism-speaks-a-hate-group/. Accessed 7 Jan. 2017
Small But Kinda Mighty, 2 Apr. 2013, smallbutkindamighty.com/2013/04/02/why-i-dont-support-autism-speaks-which-is-why-i-dont-light-it-up-blue/. Accessed 7 Jan. 2017.
Ask an Autistic #6- What's Wrong With Autism?
