Why I am Against Autism Speaks (and you should be, too)

Edit 6/20/14 I have updated this and created a new and hopefully better sourced and easier to read document.  Please go here:

https://thecaffeinatedautistic.wordpress.com/new-autism-speaks-masterpost-updated-62014/

(TW: Ableism) Autism Speaks is the most well-known autism charity.  They have the most media coverage and are endorsed by many celebrities, but this certainly does not make them a good organization.

• Autism Speaks does not have a single autistic member on their board.
• Autism Speaks only spends 4% of their budget on “family services”.
• Much of Autism Speaks’ money goes toward research, and much of that research centers on finding a way to eliminate autism, and thus, autistics (which will likely be done through a prenatal test, in the same way that the Down’s Syndrome test is conducted).
• Autism Speaks produces advertisments, small films, etc. about what a burden autistic people are to society.
• Autism Speaks was responsible for “Autism Every Day”, which featured a member of their board talking about contemplating murder-suicide of her daughter in front of her daughter. This has now be removed from Autism Speaks’ Youtube channel.
• Autism Speaks is responsible for the atrocity known as “I am Autism”, a short film produced by the same person who directed the 3rd Harry Potter movie (yes, really) and features an ominous voice saying things like “I am autism…I know where you live…I work faster than pediatric AIDS, cancer, and diabetes combined…I will make sure your marriage fails.”

In short, Autism Speaks is a very large part of the problem; they create a stigma that makes it far more difficult for actual autistic people like myself to be heard, to have our opinions matter, and to fall anywhere outside of the “autistic angel” and “screaming, violent, rocking in the corner autistic” stereotypes. In addition, for them, as well as many other organizations (and the media), autism is considered to be a child’s disorder/disability, and you will often hear people say “where are all the adult autistics?” I can’t tell you how many times I’ve heard that in the past 5 years or so. The answer to that is simple!  We’re right here in front of you.  We may have been misdiagnosed as children with learning disabilities, intellectual disabilities and the like when the diagnoses of autism, PDD-NOS and Asperger’s weren’t as precise (or even existent) as they are now.  We may not have been diagnosed at all and simply treated as though our difficulties are our own doing. We vary in where we fall on the spectrum, though functioning labels are gross and you shouldn’t use them.

For further reading, here are a few resources about Autism Speaks:

• Say No to Autism Speaks
• I’m Autistic, But Autism Speaks Doesn’t Speak for Me.
• An Autistic Speaks about Autism Speaks.
• A Chart Regarding Autism Speaks’ Allocation of Funds
• ASAN’s flyer regarding Autism Speaks (this is easily printable and is good for distributing information quickly).

Here are a few other terrible things that Autism Speaks has done recently.

• This woman’s job offer was rescinded after she asked Autism Speaks for accommodations in caring for her autistic son.  They refused, and she made necessary accommodations for childcare, but they withdrew her offer anyways.
• Autism Speaks shared the news of Google removing hate speech regarding autistics from Google’s autofill feature, completely erasing any mention of autistic people’s flashblogs having anything to do with the change.  It was only after a member of the autism community (and not a parent, but an autistic person themselves) spoke with a reporter about the flashblog and a statement was released to the media that Google decided to make this change.
• Autism Speaks highlighted AAC use, while erasing those those who actually use AAC devices to communicate.  The focus was on the caretakers, not on the autistic people themselves. (The attached link has a link to a rebuttal by a nonspeaking autistic person, Amy Sequenzia).

There are a number of corporate partners — big businesses (for the most part) who align themselves with Autism Speaks. This can take many different forms, but in general, you should consider that a purchase to any of these companies may benefit Autism Speaks. The list is as follows (thank you, austryzor):

• ATA Martial Arts
• Bachman Pretzels
• Bob’s Red Mill
• Build A Bear
• Capital One
• Casey’s General Stores
• Continental Accessory
• Dollar General
• Dover International Speedway
• eTrak
• Fashion Bug
• FedEx
• Fox Sports
• GAP
• Joe’s Crab Shack
• Kid Natural Hero
• Landscape Structures
• Lindt and Sprungli
• Mattress Warehouse
• Med Claims Liaison
• Modell’s Sporting Goods
• Panera Bread
• Pump it Up
• Queens Flowers
• Scentsy
• Shoprite Supermarkets
• Sprouts Farmers Markets
• Stadium NEST Fragrances
• Stella & Dot
• The Home Depot
• TJMaxx
• Total Wine and More
• Toys R Us
• White Castle
• Zales

Some people have contacted me with requests for what organizations actually do help autistic people.  There are a few, in fact, that actually focus on autistic people, and not just autistic children. The final two are actually general disability organizations, and not specific to autism.

The Autistic Self Advocacy Network is pretty much the best choice.

The Autism National Committee

Autism Network International

Autism Women’s Network

TASH

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Autistic people are…

Last week, we blogged about “Autistic people should…” as a response to Google’s autocomplete suggestions for “autistic people should” and “autistic people can”.  This was a flash blogging event, and there are more entries chronicled here. 

Since then, a number of things have happened.  People took notice. This is a good thing! Google is going to change their search terms. Even large organizations like Autism Speaks noticed! That’s a good thing, right? Oh wait.  Autism Speaks mentioned Google.  They didn’t mention anything about the Autistic people who made this happen.  Comments on their page by Autistic people have gone completely unanswered.  This, on the day when we as Autistics are taking time to mourn our dead, unjustly killed by their caretakers.  Deaths that were caused by the terrible ideals that Autism Speaks perpetuates.  I am demanding an apology from Autism Speaks.

So today, I am going to tell you a little bit about this community of mine.

Autistic people are authors of our own stories.  Too many times, I find an article about an autistic person that makes me think that their voice is going to be adequately represented, that they’re going to be able to tell their own story.  And while that is sometimes true, most of the time it is not.  I’ve gone into the #autism tag on Tumblr on more than one occasion, seeking to connect with my fellow autistic people, and finding nothing more than parents and siblings and educators and so-called “experts” talking about someone they know who “has autism”.

But Autistic people are speaking! Loudly! In many different forums.  I find that I can connect with a great deal of very diverse Autistic individuals online, because it’s certainly easier for most of us to communicate in text-based ways than verbally or in person.  Autistic people are capable of telling our own stories.  While, yes, we may appreciate being backed up by our family members, we don’t need them trampling all over us in order to tell our story for us, as though we cannot do it on our own.

Autistic people are competent.  There’s a saying that goes for all of the disability community, but is especially relevant to autism, as there are many among us who are nonspeaking.  That phrase is “presume competence”.  Assume that regardless of a person’s level of communication, you must presume that they are able to understand you, I’m constantly reminded whenever we talk about presuming competence of Carly Fleischmann, and how her parents were told that she was incapable of understanding.  They were told incorrect information regarding their daughter’s diagnosis, and as such, they assumed that she didn’t have the ability to understand.  That is, until she turned 11, was given access to a computer keyboard and she began typing her thoughts. This is the case with many nonspeaking individuals.  I recall one of the last documentaries I watched (that wasn’t autistic-led, which is hard to find in the first place) was Loving Lampposts.  In it, one of the nonspeaking Autistics said that people presume that he doesn’t have much to say, that there’s little of worth that he will communicate.  This is the problem with in-person communication between neurotypical folks (who are sometimes considered “experts” but really know very little) and autistic folks.  The NT folks see someone who cannot speak, who stims quite a bit, and they think “weird”, “not having anything to contribute”.  However, if these NT folks came upon some of the nonspeaking Autistics I know online, they would claim that there was no way that they could be “low-functioning,” because in many NT folks’ mind, “low-functioning” equals “non-thinking” or “incapable”.  Autistic people are competent.

Autistic people are more than a functioning label.  This is related to point #2, of course.  It’s a little bit ridiculous, but many allistic and NT folks (allistic simply means “not autistic”, whereas NT means “completely neurotypical with no neurodivergences) tend to like to put these labels on those of us who are Autistic.  “High functioning”, “low functioning” — all of these undefined terms that really don’t mean anything.  Laura Tisoncik described the dichotomy best when she said “The difference between high-functioning and low-functioning is that high-functioning means your deficits are ignored, and low- functioning means your assets are ignored.” In other words, it’s a no-win situation.  I’ve had the functioning label thrown at me over and over again.  I’m “too high functioning” to deserve a voice in the debate over a cure, so some say.  But then again, “low functioning” folks don’t get a voice either, because they aren’t able to have coherent thoughts, and opinions and make decisions about their own lives.  I am a person.  Autistic people are people, first and foremost.  We are not functions.  I addressed some of this (and a few other points) in this post.

Autistic people are brilliant. This doesn’t mean “high IQ”.  That’s not what I mean when I say brilliant.  Perhaps it’s somewhat of a throwaway word, overused like “awesome” and “amazing”.  But Autistic people are brilliant.  We are a people who are often treated as though we are not quite human, we are erased, we are dehumanized, we are told we have no empathy, we are monsters, we are not worthy of love or affection, and that in the end, our abusers will be the ones to receive sympathy if we are abused or murdered.  We are told that we are not trustworthy because of our awkward body language and lack of eye contact.  But you know what? We are resilient.  We are survivors, and we fight every single day of our lives to do away with the stigma against people like us.  Not every one of us can be “out” as autistic, because currently, that’s not safe to do.  Despite the fact that autism is a disability covered under the ADA, many of us have been discriminated against with regards to schooling and work, and perhaps it is necessary to hide, to “act neurotypical”.  Autistic people are a community.  We are a community of very different people who share a common experience with the world — an overwhelming yet beautiful place to live.

Autistic people are brilliant.