Why Autistic People Generally Dislike Autism Speaks

Why Autistic People Generally Dislike Autism Speaks – A few thoughts and a little history on Autism Speaks. #actuallyautistic #neurodiversity



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Hey guys!  So, this week’s video, I wanted to do something just a little bit different.  I just wanted to talk a little bit about what the deal is with Light Up Blue and Autism Speaks, and #RedInstead, and why a lot of autistic people actually do not support (and actually really dislike) Autism Speaks, and why many autistic people ask that non-autistics do not light up blue in April for Autism “Awareness Month.”  I just wanted to talk a little bit about that in this video because I get these questions a lot, and I thought it would just be easier to put it all in one place.  So, if you’re curious about any of that and what’s the deal with Autism Speaks and Light Up Blue and why do autistic people say no to this every April, stay tuned and I’m going to talk about it.

Autism Speaks started in 2005 by Bob & Suzanne Wright.  They have two daughters that I know of, because both of them have come at me on Twitter before … telling me, threatening me, and saying different things, and so I’ve blocked them.  But this was started because Bob & Suzanne’s autistic grandson – and this family has a lot of money … Let’s see, it was estimated that in 2013, Autism Speaks CEO’s salary was $371,000.  Umm, let’s see what else … Autism Speaks spent over $52M in advertising one year.  With all of that, they’re pulling in a lot of money; this family and this organization has a lot of money.  And the problem … well, there’s a lot of problems.

Let’s start with their name “Autism Speaks.”  It is an organization full of non-autistic people who are speaking about autism, and the name implies – Autism Speaks – that they need to speak FOR autistic people.  And ironically enough, as I’ve seen with daughters Katie and whatever the other girl’s name was, when autistic people do try to speak up and say that they disagree with Autism Speaks or the messages that Autism Speaks sends out, Autism Speaks actually seems to be trying to silence autistic people who are speaking.  So that’s an issue, at least from my experience with Katie and her sister.

The other issue is the amount of money they’re pulling in, and the use of that money.  You know they say they’re funding research and helping families – and a very small percentage of that actually goes to helping families and giving back.  A lot of their money actually goes into marketing their organization and, you know, salaries of their CEOs and people like that.  Up until recently – I think it was 2016, correct me if I’m wrong – their mission still included the cure and finding cures of autism.  So, they’re very outdated and they don’t speak for autistic people.  They don’t have autistic people on their board.  They’ve had an autistic person on their board before, but they didn’t stay on their board very long, so it sounds like maybe they weren’t being listened to, because they left.  So, there’s just a lot with this organization here.

They are a big part of perpetuating the stigma that autism is this horrible, horrible thing that families have to overcome because that’s been the Autism Speaks narrative from day one.  If you read around on their website, it’s very … it’s horrible.  Autistic people hate it, but it’s just talking about how bad autistic people are and how hard autistic parents have it when they have to have an autistic kid.  They push ABA therapies, which is essentially abusive dog training for children.  They … you know, there’s all these things they’ve been doing and they’re not listening to autistic people.  And they’re very popular amongst, you know, parents of autistic children – neurotypical parents of autistic children – or, you know, people with young children who are first diagnosed, but they don’t have the support of the older autistics and the adult autistics and the autistic community.  And they’ve done a really good job of showing themselves off to the rest of the world in a way that people think “Oh yeah, Autism Speaks is awesome!  I’m supporting autism by donating to Autism Speaks!”  And it’s like no, none of that money actually helps autistic people.  It helps that giant, massive organization fund more marketing and – a very, very small percentage of their funds actually goes to helping people.  So, don’t support Autism Speaks.  Don’t light up blue.

The next thing is that awfully ugly offensive puzzle-piece logo, which is Autism Speaks’ representation of how the autistic person is a puzzle that needs to be solved or a part of a person, or broken, defective.  It has a lot of different meanings.  It’s also a blue puzzle piece, because they originally thought autism was only affecting boys, so that’s why it’s blue, and that’s why everything is light up blue.  So, a lot of that is also outdated, because we know now that there are plenty of autistic women out there.  So, blue is a problem.  The puzzle piece is a problem.  Autism Speaks is a problem.  It is a problem that Autism Speaks does not speak for autistic people because they cannot speak for us, because they are not autistic.  The stigma and the message of Autism Speaks is a problem.

Those are just a few things, and I encourage you to dig deeper.  I just needed to mention it because I’ve had questions and I want to throw that out there, and this month in April I will be doing what I can to spread and amplify the voices of autistic people during Autism Acceptance/Awareness Month because we really don’t need awareness.  People know autism exists.  They don’t have an understanding of what autism actually is, but we need them to accept us.  We don’t need them to be aware of us anymore.  We’re was past that point, I hope.  So, I will be lighting up #RedInstead this month, which is a grassroots, autistic-led social media hashtag and campaign to kind of counteract all that blue, because red is the opposite of that.  Kind of.  So that’s what I’ll be doing this month.

Anyway, guys, do you like Autism Speaks?  Did you know about Autism Speaks?  Do you have comments on why you don’t like Autism Speaks?  Did you like this video about Autism Speaks?  Give me a thumbs up if you liked the video.  I’ll talk more about Autism Speaks and this kind of stuff in the future.  But anyway, I’d love to hear your thoughts in the comments, okay?  Bye guys!

8 thoughts on “Why Autistic People Generally Dislike Autism Speaks

  1. I never knew that the lighting up blue thing was due to Autism Speaks! I’ll not be doing that again. I never knew that it was blue for that reason either. Disgusting. I did already know that Autism Speaks is reprehensible since I met a friend who has Aspergers. My cousin is autistic, and I’ve cared for autistic children in my job and I’m definitely going to be sharing this message with people in the future now that I know more.
    Thank you for speaking up!

    1. Yes, thank you. I was completely unaware of much of this, in addition to the blue puzzle piece thing. I have an adult grandson on the spectrum who struggles to find worth in himself, despite his completion of college and great work ethics. I feel fortunate that he trusts me when he needs to talk, but sometimes the pain I hear just leaves me with nothing to offer that seems might be helpful.

      I would be so grateful for more guidance from people who are neurodivergent on alternative ways to view autism and to help assimilate these views into our perspectives.

  2. Reblogged this on Surfing the Sea and commented:

    I don’t usually reblog posts from other people as I always strive to create my own content, but this is a special post for World Autism Awareness Day (today) and why Autism Speaks, one of the world’s leading autism charities, is generally reviled by autistic people themselves.

    Instead of mere awareness, we also need acceptance. That’s why, from now on, I will call April ‘Autism Acceptance Month’ rather than just ‘Autism Awareness Month’.

  3. This reminds me of AVEN, the asexual awareness network, which I found a few years ago. By their logo, it says “An asexual person is a person who does not experience sexual attraction”, and to my disappointment, I found out that most of the mods were “sexuals”, and a lot of the participants were trying to figure out exactly what kind of sexual they were and making lists, like “gray asexual”, “demi-sexual” etc and generally talking about sex all the time. The “sexual” mods chided the asexuals if they talked about celibacy. I appreciate this video of yours very much, as I am neurodivergent and asexual, and sick and tired of the butting in and imposing of convention that seems to creep in wherever we try to have a space to breathe.

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