Autism Speaks Does NOT Speak for Me!

I used to really enjoy April, as the gateway to spring. Now, April is just miserable, and horrible for my blood pressure… I can’t wait for it to be over.

Have you ever logged on to Facebook, just to see a post from a “friend” that advocates for an organization that is raising money to employ the use of eugenics against YOU.. And a lot of your friends?

How about numerous friends… all of whom are actually well meaning?

I have, and so have many other Auties and Aspies. Personally, I’ve taken to just deleting the “friends” who do so, in an effort to keep that crap off my feed. NO ONE should be subjected to the hurt of seeing a “friend” advocate for the extermination of people like them.

The thing is, the root problem here is ignorance, on so many levels. When it comes to a giant “charity”, I don’t think that everyone feels the need to actually educate themselves on the actual details of the organization. If you see the name everywhere, it must be legit, right?

Well, it depends on your point of view. If you’re someone on the spectrum, odds are pretty good that you have nothing good to say about Autism Speaks – and for good reason.

You see, many of us on the Autism Spectrum are intimately familiar with Autism Speaks, what they stand for, and how difficult they’ve made our lives as a result of their supposed “help”. A few key points, as I fear I could rant about them endlessly:

1. Autism Speaks advocates for a “cure”. That right there is my first red flag. I have yet to meet a single autie or aspie who wants a cure. We don’t need a cure. This isn’t a disease, the only thing “wrong” with us is that we are different from the majority.

The fact that they use “cure” language extensively means that they don’t actually care about the emotional well being of us, they just want to see us disappear. (This is a summary of several years of watching their antics, btw). It’s one thing to provide support for those who need and want it, and/or to look to manage certain symptoms / manifestations… it’s something COMPLETELY different to declare us broken/diseased and declare that all of us – and yes, those deemed “high functioning” also count – need to be “cured” of something that has a big part in forming who we are, our personalities, our outlooks, etc.

2. Autism Speaks uses fear and misrepresentation of Autism to line their pockets. This is exploitative at BEST, and is extremely damaging. They put out commercials with ominous sounding music and dark imagery claiming that autism will wreck your family and destroy your marriage, among other things.

This line of propaganda – along with the cure language – DOES have an impact on the lives of people on the spectrum, and it’s nothing positive. This contributes to the demonization of us, to bullying in school, and more. It contributes to the culture of fear against us, leading to such WONDERFUL parenting moves as employing the use of BLEACH ENEMAS in a desperate attempt to “cure” us. (Not just bleach enemas, but also the forced ingestion of bleach!)

Oh, and you know how there is now speculation of the suspect having Aspergers whenever there is a mass shooting? Another fun result of Autism Speaks’ fear mongering.

They claim to want “awareness”, yet all they spread is ignorance.

3. Though their name is “Autism Speaks”, they have no autistic people involved with running the organization, and have actually used their lawyers to intimidate and silence Autistics that speak up against them. They don’t represent us… and I encourage you all to Google “Autism Speaks Doesn’t Speak for Me”.

Oh, and if you want a “fun” example of how out of touch they are… they host a “Walk for Autism Awareness” at the mall of America, encouraging parents to bring their Autistic children. MOA is pretty much hell on earth for many of us on the spectrum… so yeah, torture your poor Autistic kids to “raise awareness”. Awesome.

4. The only “cure” for autism is a preemptive abortion, and they know it. Yes, Autism Speaks looks to employ eugenics against us. That money being raised for “Research”? A lot of it is going towards looking for a way to test for an autism marker in utero. They want to give parents a way out, to prevent people like me from being born. This is disturbing on so many levels, to me. My own mother would likely have gotten an abortion, had she known ahead of time.

I can’t tell you how disturbing and heart wrenching it is to see posts about fundraising for Autism Speaks, coming from “friends”. While not intentional, such posts DO come wrapped up in a theme of “People like you don’t deserve to exist”, “There is something wrong with people like you”, and “I AM ACTIVELY FUNDRAISING to prevent people like you from existing”.

There is the argument that Autism Speaks actually provides some decent resources for parents. Well, that’s great. Hitler’s actions also produced some advancements in science…. but I don’t see that as much reason to justify or support HIS actions (Which have a LOT of parallels to Autism Speaks, when you think about it!).

The thing is, there ARE legit organizations out there that advocate for actual acceptance and support of people living on the spectrum. Organizations that don’t make April – or life! – hell for us. They may not have the monopoly that Autism Speaks does, but they have ethics!

I can’t tell you how happy I was to see that Think Geek’s April autism promotion is in support of an organization that is run by Autistics, for Autistics, the Autistic Self Advocacy Network. That they are promoting Autism ACCEPTANCE month, rather than “awareness” month. Really, what we need is acceptance, not Autism Speaks’ ignorant brand of making people “Aware” of us.

So, this month… please research before you support. Sometimes, support is more harmful than standing back and doing nothing.


ThinkGeek encourages you to be fashionably accepting this month!

If I’ve unfriended you on Facebook or unfollowed you on Twitter over your recent posts in support of Autism Speaks, and you’ve had a change of heart after reading this, please let me know. While I can’t be friends with anyone actively supporting the extermination of people like me, I do understand that mistakes happen!

Editing to add:

To the commenter from this morning: You’re right, I won’t be approving your comment, as I really have no obligation to allow such abuse / hate speech to be posted to my blog. I did, however, want to address a couple of your points, as I figure that kind of ignorance should be corrected.

1. Sorry to burst your bubble, but I was first diagnosed around 15 years ago, and it’s been confirmed several times. No “cop out” here! You’re welcome to find me “socially inept, insensitive, annoying, and childish”, but you’ll have to pardon me if I find the opinion of several doctors to be just SLIGHTLY more legit than that of an internet troll.

2. The fact that autism “can be paired” with other neurological and mental issues means absolutely nothing. So can – and frequently DOES – neurotypicality!

3. Regarding “If you’re able to express yourself … you’re likely not autistic.” – What a ridiculous statement! For one, I hope you’re aware of what “spectrum” means. Being high functioning does not necessarily place one OFF of the spectrum. Secondly, there are plenty of even completely non-verbal autistics that are beautifully spoken in written form. Are they similarly “not autistic enough”, in your mind? The idea that we – low OR high functioning! – are somehow so broken as to not be able to form a coherent blog entry is beyond ignorant. That ignorance is EXACTLY why I speak up.

In closing, I’d like to link to a few other blog entries on the subject. Good reads – but only a few of MANY!

Why I Don’t Support Autism Speaks (Which is Why I Don’t Light it up Blue)

Autism Speaks Promotes Hysteria & Ignorance

Offending Autism Speaks

This is So Weird – Autism Group Hates Autistic People

Author:Marie Porter

Marie is an award winning cake artist based in Minnesota's Twin Cities. Known as much for her delicious and diverse flavor menu as for her sugar artistry, Marie's work has graced magazines and blogs around the world. Having baked and designed for brides, celebrities, and even Klingons, Marie was proud to share her wealth of baking knowledge in her two cookbooks: "The Spirited Baker" and “Evil Cake Overlord”. Marie has also authored a book about her experiences surrounding the 2011 Minneapolis tornado: "Twisted: A Minneapolis Tornado Memoir"

10 Responses to “Autism Speaks Does NOT Speak for Me!”

  1. April 11, 2013 at 7:57 am #

    It is unfortunately true that well-meaning people in the general public support Autism Speaks because they don’t know these things. If you don’t know anything about autism – and you hear kids are being diagnosed with this thing that is negatively portrayed – and you hear that someone is doing a walk to raise money for the dx – you think it’s a good thing. Sorta what I used to feel like before I had my child. Or about breast cancer and Komen, for example. I try to remember my ignorance combined with good intentions – and that most people just don’t know.
    Brenda @ MamaBeGood (@mamabegood) recently posted..What It Also Means

  2. betsyl
    April 12, 2013 at 10:21 pm #

    nothing about us without us. i’m nt, and am disabled, and that is a longstanding cry of the disability rights movement. (i assume you’re familiar with the models of disability as being socially constructed?)

  3. JR
    April 13, 2013 at 8:36 am #

    I found your blog in an internet search for “making banana wine” because I got a wild hair and decided I wanted to do that (long story as to why).
    I started flipping through the other entries and found this.
    I think I am now “in love” with you, in that internet way 🙂
    I have become so aggravated about the above issue I just clamp mouth shut and grit my teeth through April because no one ever gets what I’m trying to say to them. My son is the first person in our family to be formally diagnosed with autism, but after initial disbelief I began to realize that about half of my mother’s side of the family is autistic, including me. I finally talked to my mom about it (we aren’t close) and she said my grandfather didn’t talk until he was four. So we’re all weirdos. And we’ve just muddled on with our lives being weirdos. So – Autism Speaks thinks my entire family is tragic and shouldn’t have been born? I know I risk Godwin’s Law here but isn’t that a little Nazi-ish?

  4. Will
    April 13, 2013 at 1:23 pm #

    Stumbled upon this enlightening blog while searching twitter feed, and am pleased that I did. I have an 18 year old high functioning son on the spectrum, and am about to share this with him and many others. I enjoyed your perspectives. Regards.

  5. May 12, 2013 at 11:41 am #

    cause marketing is the end result of – and everything that’s wrong with – the privatization of the health care industry

    i just saw this film about Susan G Komen For the Cure about breast cancer this weekend. it blew my mind.

    http://www.youtube.com/watch?v=3QPZfcYTUaA

    i really hope someone else can make such a hard hitting documentary about autism speaks one day. i’m afraid it wont’ happen though.

    autism speaks reminds me of scientology. they seem relentless, but there are some resistance movements out there.

    thanks for spreading the word.

  6. LMcNulty
    June 1, 2013 at 9:19 pm #

    I am SO GLAD to see this! I have always disliked the tone of so many “Autism Awareness” items, but not known how to put it into words. I have a son with ASD and people always ask me about the Autism walks and similar events, which I do not go to. I would never want him to think that I would want him to be “cured”. He has lots of challenges, but I would never want him to be different. I love him the way that he is.

    I just wish other people would be more understanding.

  7. Ilovemyauties
    June 8, 2013 at 6:31 pm #

    Thank you. I always knew my grandbabes are just who God made them to be. He only make the best.

  8. April 5, 2014 at 8:35 pm #

    Awesome post! I’ll be spreading it around.

    Cheers.
    Sarah Levis recently posted..Thoughts About Disability Awareness Days

  9. Lilbitz
    April 5, 2014 at 9:31 pm #

    As a teacher of students with autism, I appreciate Autism Awareness month because we need resources. I will certainly look into your claims, I never had anything to do with the charity and assumed perhaps incorrectly that we had the same goals. I try to help my students learn to fit into a world that is not quite ready for them. I try to help them communicate with others and to explore and express their wonderful imaginations. I try to be someone they can trust who will help them through the experiences life throws at them without being overwhelmed. I try to educate them in a meaningful way that can broaden their interests. I certainly wouldn’t want any of my students not to exist or to change who they are but I would really like them to live up to their full potential. If what you say is true I can see why you would not support this charity but if some philanthropist sees something ‘lit up blue’ and decides to fund purpose built schools with a less sensory-overloading environment than the unsuitable regular school buildings built decades ago that we are forced to operate in, I for one would appreciate it and I think my students and their parents would too.

  10. Chrystal
    April 6, 2014 at 3:08 am #

    As a teacher to elementary age students, quite a few who are on the spectrum, and as a friend of parents with children on the spectrum, I appreciate this post. Could you share organizations that you do support? Ones that seek only to provide resources and support to those on the spectrum?

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