Wednesday, April 1, 2015

Autism Acceptance Month 2015

Autism Acceptance Month starts today! Autism acceptance month is an autistic-led movement "about treating autistic people with respect, listening to what we have to say about ourselves, and making us welcome in the world." Here are some ways you can observe Autism Acceptance Month:

Autism Acceptance Campaigns and Projects

The Autistic Self-Advocacy Network's (ASAN) Autism Acceptance Month Project
www.autismacceptancemonth.com

[image description: a pyramid of three rainbow asterisk stars, to the left of the words
"I signed the pledge! Acceptance is an action. Autism Acceptance Month.]
"April is Autism Acceptance Month. During Autism Acceptance Month, we focus on sharing positive, respectful, and accurate information about autism and autistic people.

"Autism Acceptance Month promotes acceptance and celebration of autistic people as family members, friends, classmates, co-workers, and community members making valuable contributions to our world. Autism is a natural variation of the human experience, and we can all create a world which values, includes, and celebrates all kinds of minds.
"You probably know an autistic person already. Get to know us a little bit better."
Other ASAN April actions


The Official Event for Autism Acceptance Day, 2015

www.facebook.com/events/640472342746324

"AAD has been an ongoing event since 2011. ACCEPTANCE, not "tolerance," not "I accept you but not your autism." Pro-neurodiversity, pro-supports and services, against "cures," AAD was started to counter April "awareness" stunts that demean us. It has expanded to become a way of viewing Autism in a positive and accepting way. autismacceptanceday.blogspot.com"

Use #AutismAcceptanceDay5 to join the conversations!

Mocha Autism Network's
#RoyalBlueForAutismAwareness 2015 campaign is
"Awareness first, then acceptance. There is a reason."
www.royalblueforautismawareness.com

Specifically: "...the lack of awareness regarding education to Communities of Color related to Special Needs. Not only were there not many communities speaking about Autism, most national organizations did not discuss talking about Autism to Communities of Color. The lack of "awareness" of people of color is apparent in reviewing the lack of diversity in organization boards, campaigns and outreach goals.

"Does that mean that we don't understand the importance of "Autism Acceptance?" Not at all.

"Because there are few national campaigns such as this one, where the emphasis is on #AutisticFamiliesofColor, the Mocha Autism Network decided to start from the very beginning, to help our communities learn about Autism and its traits, accept them in our community and gain the resources to assist our communities wholistically. And we're getting there. When this organization was conceived in late 2013, there weren't very many talks of diversity in Autism Awareness."

Walk in Red
www.facebook.com/walkinred

"We want to everyone to post selfies wearing red shoes, socks, hats, nail polish or any other item of clothing (etc) to the hashtags ‪#‎WalkInRed‬ and ‪#‎WalkInRed2015‬ to promote ‪#‎AutismAcceptanceDay5‬ ‪#‎AutismAcceptanceMonth‬ & ‪#‎AutismAcceptance‬ in general. We're promoting a flashblog/tweetstorm for April 2nd to draw attention away from ‪#‎LIUB‬ [Light it Up Blue] and will be continuing throughout the remainder of April. This will be an annual event; please like and share, etc. Thank-you!"


Disability in Kid Lit's Autism on the Page event

disabilityinkidlit.com/2015/04/01/autism-on-the-page-an-introduction
disabilityinkidlit.tumblr.com

"April is, of course, Autism Awareness Month. During a month like this, in a literary community like the kidlit world, it’s logical to discuss autistic representation in fiction. Autistic narrators have been dubbed a trend, and however cringe-worthy that designation may be–more on that later this month!–it’s true that there has been a minor explosion in “autism books” over the past decade. Autistic narrators. Autistic siblings. Autistic best friends. Sometimes those characters’ autism plays a central role, sometimes not.
In all cases, it’s worth discussing. Representation, as we all know, has a huge effect on readers. Good effects, bad effects. Mirrors and windows."

 

Stuff You Can Buy to Support Autism Acceptance

From Aromaleigh Cosmetics
Enigma: A Beautiful Eyeshadow to Benefit the Autistic Self-Advocacy Network

ENIGMA.grid
[image description: Three panels featuring closeups of a
sparkling light brown cake eyeshadow, with the words
"enigma: proceeds benefit The Autistic Self Advocacy
Network in a white font.]
 "50% of this Enigma’s sales for the month of April will be donated to the Autistic Self Advocacy Network (ASAN), an organization which the Autism community collectively would like you to be aware of, and to support- instead of Autism Speaks (learn why!)

The Autistic Self Advocacy Network seeks to advance the principles of the disability rights movement with regard to autism. ASAN believes that the goal of autism advocacy should be a world in which Autistic people enjoy the same access, rights, and opportunities as all other citizens. We work to empower Autistic people across the world to take control of our own lives and the future of our common community, and seek to organize the Autistic community to ensure our voices are heard in the national conversation about us.

Nothing About Us, Without Us!"


And then there's The Autistic Self-Advocacy Network's
Autism Acceptance Month CafePress Shop

Bags
[image description: a beige canvas tote bag featring the words
"Autism Acceptance Month"
then three rainbow-colored asterisk stars, then
"Acceptance is an action
www.autismacceptancemonth.com"]

Autism Acceptance and Awareness Day App Sales!

[image description: a light brown
cartoon owl with its right wing raised,
under the words "Proloquo2Go
50% off on Autism Acceptance Day
~April 2]
From Proloquo2Go's parent company, Assistiveware:
"April is Autism Acceptance Month, and more specifically, April 2 is Autism Acceptance Day! No, this is not a typo. We are shifting from autism awareness to autism acceptance. We need a positive change!"


AAC: LAMP Words for Life

Words for Life will be 50% off on April 2.
iPad Screenshot 1
[Image description: a 12x6 grid of icons with small text labels above each]
"LAMP Words For Life™ is a full English vocabulary augmentative and alternative communication (AAC) language app that combines the power of the PRC Unity® language system with Language Acquisition through Motor Planning (LAMP™) principles and strategies. LAMP™ is a therapeutic approach based on neurological and motor learning principles as well as clinical experiences that address the language development and communication needs of children with autism. "


Personalized Story Making: Kid in Story from Locomotive Labs

On sale for $.99 from 4/2 - 4/5, for Autism Acceptance.

[image description: a stylized photo of a light-skinned child
with brown hair pinching the cheeks of a similar child,
surrounded by three cartoon characters, above the words
"When people are happy they smile.
Here is my happy face!"]
"Kid in Story Book Maker makes it easy and fun to create visual stories to support learning, social modeling, and early literacy with your child as the star character."

What Will TPGA be Doing?

As for the team here at Thinking Person's Guide to Autism, we have archives bursting with profiles of amazing autistic individuals, posted during Autism Acceptance Months past. We're going to be resharing them all month.

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Let us know about any other campaigns or sales we should be sharing by leaving a comment on this page. Thanks. -The Editors

Tuesday, February 10, 2015

We aren’t your scapegoats. End of story.

Chavisory
chavisory.wordpress.com

I am oh so glad to see the anti-vaccination movement finally seeing some serious public blowback, and very, very sorry that it has taken a lot of sick kids to do it. And alternately thankful at writing like this (Vaccines Don’t Cause Autism, But That’s Not the Point. Stop Being Ableist.) being all over my Facebook feed, and ambivalent about some of its logic. (It is still well worth reading.)

If vaccines caused autism, even in some tiny percentage of vaccinated children, then whether the tradeoffs were worth the risk might be an ethical discussion worth having. (In which I would still give a hell of a lot of weight to “Measles encephalitis will straight up kill you, autism won’t.”)

But it isn’t. Vaccines don’t cause autism, period.

A hypothetical situation: If there were some form of medical treatment that carried a risk of turning me non-autistic, I would be deeply hesitant to take it, whatever the risks of not taking it were. Not because I think being non-autistic is the worst possible fate. The experience of the 90% or so of people I know who are non-autistic suggests to me that being non-autistic is not the worst possible way to go through life.

But that’s not why I wouldn’t want to be non-autistic. It’s because, as the neurodiversity movement has gone to great lengths to attempt to communicate to the neurotypical majority, the patterns of how we innately experience the world on a neurological level are intimately entwined with our identities as people.

I don’t know what about being non-autistic is so compelling to non-autistic people. I don’t know how many of them could even articulate what it is if you asked them, but they seem attached to it, and as someone not sharing that experience, I don’t get to assume that they are wrong to be so.

Likewise, if there were some form of medical treatment that carried the risk of turning a gay kid straight, I think we would rightly express serious ethical concerns about that possibility. Not because being straight is the worst possible thing that could happen to a person. But because, as the gay community has spent decades trying to tell us, sexuality for most people is as intrinsic to identity and their sense of personhood as things like gender, ethnicity, language, or spirituality might be.

Try it: If you’re cis-gender, would you readily embrace some kind of medical intervention that, whatever its positive effects, carried the potential side effect of turning you into a member of another sex or gender? Even if you chose to accept that treatment because not dying was worth it to you, would you do it with no sense of fear or conflict?

Why not?

Because the fact that being autistic or not, a man or a woman, gay or straight, cisgender or transgender, isn’t a bad or wrong thing unto itself is kind of beside the point when we’re talking about altering deep-seated characteristics that are so profoundly tied to our identities.

If vaccination could cause autism, even if we overwhelmingly decided for good reasons that the tradeoff was acceptable, that would be something we’d have a responsibility to know. It’s not because it doesn’t. In fact, a great deal of research has been dedicated to finding out whether vaccination can cause autism, and I’m resentful of that not because autism isn’t something that should be feared (though it isn’t), and not because Andrew Wakefield turned out to be wrong, but because he committed fraud and every variety of ethical malfeasance and objectified autistic people in the process, for personal gain, with no remorse whatsoever. Being wrong and eventually discovering that you’re wrong isn’t a sin, scientifically, but that’s not how we got the myth that vaccines cause autism. It wasn’t just bad study design or misinterpretation of data, it was a knowing act of fraud and selfishness that set both acceptance of autistic people, and public health, back by decades.

***

And don’t get me wrong—I am really appreciative and glad to see so many of my friends, so many writers and bloggers that I respect, going “You know what, I would really rather my child be disabled than dead. I would really rather have a living autistic child.” Because it’s still commonplace for parents not to feel that way, and it gets kids mistreated and killed.

But the thing is, the two things aren’t connected. You’re not risking your child becoming autistic by getting them vaccinated, because there is no relationship between the two things. And I’m honestly a little uneasy about reinforcing the link in people’s minds at all by saying “Of course I’d take the chance of my child becoming autistic to protect them from life-threatening disease,” because you’re not taking that chance.

Vaccinations don’t cause autism. And autism isn’t a death sentence. And those facts are unrelated.

And whether autism is a horrible affliction or an expression of human diversity with advantages and disadvantages like any other, has nothing to do with whether it’s okay to make autistic people boogeymen or rhetorical pawns, because the answer is “no” regardless.

Let’s take another example, of something that is generally agreed, including by the people who have it, to be pretty awful, like ALS, Parkinson’s, or Alzheimer’s disease … all of which are also not caused by vaccination. Would it be any less wrong to fearmonger about vaccines by using a popular fear of something that is pretty awful in its own right?

No—the people coping with that condition deserve just as much as autistic people not to be made pawns in an ideological skirmish, to not have their lives and struggles be made the symbols of somebody else’s irrational fears.

Would it make any sense to say, “Vaccines don’t cause Parkinson’s, but anyway, Parkinson’s isn’t the worst thing in the world?”

Because here’s another thing—you can run the risk of being ‘splainy to someone who has less positive feelings about their own condition. Autism isn’t a degenerative and pretty much universally loathed condition like Alzheimer’s or Parkinson’s, but there are autistic people who really hate it. Who attribute a great deal of the pain in their lives to autism, who wish they weren’t, who would take a cure if one were available, who really feel that it is the worst possible thing to happen to them.

Usually when I talk to these people, I have to question whether it’s the difficulties of autism itself that makes them feel this way, or years and years of being mistreated for being autistic, which can be a very difficult distinction to make when you have no standard for comparison. But sometimes it is the former and not the latter of those things, and ultimately people have a right to feel the way they do about their own lives. I hope that they come to a better place eventually, but they also have a right to do that on their own time and in whatever way they need to, not by being told by someone who doesn’t know anything of their experience that they should just accept it.

And they still deserve not to be made objects of fear in the wholly irrational campaign against vaccination…because whether a subjective experience of autism is the worst thing in the world or not, is logically, factually disconnected from whether or not vaccines cause it…and they don’t.

Something else that actually happened: A few weeks ago, after the release of a Danish study purporting to establish a link between circumcision before age five and development of autism, a Facebook friend of a friend said something along the lines of (I’m paraphrasing) “Obviously it’s totally ridiculous, but if it scares people out of circumcising, I’m all for it.”

Which to me was actually far more offensive on its face than the persistence of fear that vaccines have anything to do with autism. Because that’s not just an irrational fear; that statement expresses a conviction that it’s okay to choose a group of people and use our existence as a scare tactic for your own ends. That if a group of people is presumed sufficiently voiceless, you can strip them of agency and the right to self-representation and use them to promulgate a falsehood that’s convenient to your own beliefs just because it’s easy.

(I don’t actually have a lot of blame for people who admit to still being afraid even though they rationally know that the connection is unfounded. Certain people and certain organizations have spent a lot of time, money, and effort to make them afraid.)

In this, it doesn’t matter how sympathetic I am to the cause of pushing back against routine, medically-unnecessary procedures on newborns. It doesn’t matter how good I think that or any other issue is. We are not your rhetorical props. We are not your scare tactics. Our wellbeing and acceptance as full and not defective or broken human beings are not your pawns for whatever your own pet cause is, no matter how good unto itself it might be.

There is one more way in which the anti-vaccination movement puts autistic people at risk that I rarely if ever see mentioned, and it’s this: Vaccination protects autistic children, too, not just non-autistic ones. Non-autistic children are not the ones who need and deserve protection from preventable disease while autistic children are the risk we run to do so. Further, most people at this point know that autism involves communication difficulties by definition, but what is less well-known is that autism often involves particular difficulty in communicating about pain or illness or other things involving body awareness. Also that pain or illness can take a particularly high toll on the communication and coping abilities of autistic kids compared to other kids. Autism is a complicated disability, and one thing that an autistic kid doesn’t need on top of everything else that they are dealing with—is the measles. The anti-vaccination movement treats consequences to autistic lives of preventable, serious illnesses as a non-issue (and the lives of immune-compromised and medically vulnerable people as utterly disposable, but that’s a whole other essay).

I actually find “Vaccines don’t cause autism, period,” to be a perfectly acceptable assertion. If you do feel the need to add an “and furthermore…,” some things to go with could be “Vaccines don’t cause autism, and vaccines also protect autistic people, whose lives count as much as yours,” or “Vaccines don’t cause autism, and autistic people are not appropriate scapegoats for your fears, so stop it.”

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Previously published at chavisory.wordpress.com.