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Autism Acceptance Month (And Why Autism $peaks Should Stop Talking)

I wrote another article for the paper I edit I hope it doesn’t suck!!! sob

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     Let’s start with the basics: I’m autistic. I’m not Rain Man. I’m not missing any puzzle pieces. I’m not a robot. I don’t “suffer from autism,” and I most certainly don’t need you to help find me a cure or to support the people who have advocated for the murder of people like me.

     I’ve only recently become active in the autistic self-advocacy community, but for many, many autistics April is the longest, most agonizing month of the year due to the house of horrors that is the organization Autism $peaks (stylization emphatically mine).

     Every April, Autism $peaks runs a whole host of “Autism Awareness” programming and campaigns, which at first glance sounds great – except that A$ doesn’t give a damn about actual autistic people. These campaigns are designed to demonize autism/autistic people as well as to seek funding for a “cure.”

     According to their website, A$ is “dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism,” and refer to it as an “urgent global health crisis.” This rhetoric is typical. A$ has frequently associated autism with words like “epidemic,” “hopeless,” and “disaster.”

     For an organization claiming to speak on behalf of all autistics, they don’t have a single autistic person on their board, making policy decisions, overseeing media campaigns, or in consultation in any regard.

     Only about 4 percent of the money that A$ takes in as a “charity” goes towards families of autistic people; the rest goes to lining the pockets of the fabulously wealthy upper executives (according to their 2008 tax returns, Chief Science Officer Geri Dawson was compensated $644,274) and funding research projects like finding a way to diagnose autism in utero – allowing the fetuses to be aborted and effectively implementing a form of eugenics.

     Autism $peaks has defended parents who have murdered their autistic children as “mercy killings.” In a frequently-broadcast, A$-branded video, “Autism Every Day,” their then-Executive Vice President Alison Tepper Singer explains her initial reaction when her daughter was diagnosed as autistic: she seriously contemplated driving herself and her daughter off a bridge.

     The only thing that held Singer back, apparently, was the fact that she had another allistic (non-autistic) daughter at home who needed her.

     The autistic daughter was in the room during the filming of this whole spiel.

     Here’s the thing: I’m autistic, and I’m happy. I wouldn’t prefer to have never been born or to have been driven off of a bridge, but according to Autism $peaks’ propaganda, I’m “the worst thing that can happen to a family.” (I’ll have you know that I just texted my parents and they disputed that claim, thank you very much.)

     Even local organizations like the Autism Society of McLean County parrot this harmful, misleading rhetoric on their “About Us” page, which says that autism diagnoses comprise a “national epidemic” that is “increasing at an alarming rate.”

     The ASMC, like A$, aims mostly at helping to ease the “burden” autistic children and family members place on their allistic relatives and caretakers. The ASMC website claims that they are “made up mainly of parents who have children with autism” and that they “strive to meet the demands” of community members.

     Their “What We Do” page lists the following: parent-centered training, community events for the family, parent support, awareness, sibling support, and recreational opportunities. Nothing reflecting the autistic child/adult as an independent person with their own wants and needs, but rather as something to be compensated for.

     The “Adults with Autism” tab links to a page about their “E=mc2” employment program, further perpetuating the image of the autistic savant like “Rain Man,” as well as denying the fact that autistic adults have many more concerns and support/accommodation needs beyond just being able to be economically valuable. The page links to a statement by Sen. Durbin about how employees with disabilities are “an untapped resource,” as if we’re pieces of machinery or incidental geological features rather than human beings.

     The dehumanization of workers with disabilities is the reason that ASAN has been participating in a boycott of and protests against Goodwill chain thrift stores – one of which is located just a few minutes from Illinois State’s campus.

     “The reason for the boycott (and protests) is the fact that Goodwill Industries employs people with disabilities under a Section 14(c) certification under the Fair Labor Standards Act,” Emily Titon explains in an update on ASAN’s website. “Section 14(c) authorizations, implemented in 1938, are most often associated with sheltered workshops, and those entities that have them can legally hire people with disabilities to work for wages far below the Federal minimum wage. Goodwill pays as little as 22 cents an hour to these employees.”

     I am more than a resource to be put to use. I am an autistic person who likes strawberry ice cream with no strawberries, collecting Star Trek action figures, and watching TV shows like “Community” – created by Dan Harmon, who is both autistic and not a burden on society.

     With this mountain of propaganda and rhetoric against autistic people, the Autistic Self-Advocacy Network has launched an effort to rebrand April as Autistic Acceptance Month. “Awareness” and hatred do nothing to help autistic people like me who already have a massive campaign of misinformation to contend with. (I was irritated to be confronted by a poster for the ASMC’s April Awareness programming and fundraising on the door of Noodles & Company – I just want my pesto cavatappi with tofu instead of mushrooms, not to be confronted with woe-is-me rhetoric.)

     AutismAcceptanceMonth.com explains that “[a]utism is a developmental disability that effects [sic] how an autistic person thinks, learns, uses their senses, moves their body, communicates, and relates to other people. Between 1 and 2% of people in the United States are thought to have an autism-spectrum diagnosis. As we learn more about autism, more people are diagnosed. Experts suspect that the real number of autistic people is a little bit higher.

     Autistic people are sons and daughters, husbands and wives, mothers and fathers, coworkers and employees, students and teachers, friends and relatives, neighbors and community members. You probably know an autistic person. Autistic people have different abilities, different needs, different interests, and different personalities.”

     For me, autism means a lot of things. It means that there is a marked difference between my written and verbal command of language (one professor noted on a paper I’d written that the difference was “striking”). It means that I have issues with sensory processing, so I sleep with a pellet-filled, 25-pound weighted blanket. It means that I have trouble with multi-step instructions, and that I often misinterpret sarcastic statements as literal.

     It means that I engage in motor stereotypies like flapping my hands, rocking back and forth, chewing my fingers/the insides of my cheeks, repeatedly pushing my hair behind my ear, shaking my legs, or tapping on my sternum when I’m excited, anxious, trying to think clearly, or otherwise trying to regulate my sensory input. This is also known as “stimming,” and stims differ for every autistic person.

     It means that I have poor proprioception, or a sense of where my limbs are in space – so I frequently trip, run into the corners of walls and lose my balance. It means I often mix up left/right and get lost constantly, even with a map. It means eye contact is extremely difficult for me. It means I get annoyed when I can’t use the third stall in the bathroom, and it means that while I love strawberry ice cream and milkshakes, if there are actual strawberries in it, I’m going to gag and feel like throwing up.

     What it doesn’t mean is that I am a sociopath. It doesn’t mean that my opinions are invalid. It doesn’t automatically mean that I’m a savant, nor does it automatically mean that I’m intellectually disabled. It doesn’t mean that I cannot communicate with other people (as a matter of fact, I recently got a great opportunity to become ASAN’s newest Community Engagement intern). AutismAcceptanceMonth.com has a .pdf dispelling these and other myths about autism, as well as more information about what autism is and how it manifests itself in different people.

     So what should you take away from this? AutismAcceptanceMonth.com also has an excellent page about why “acceptance,” rather than “awareness,” and how you can put acceptance into practice, which has been reproduced in the following paragraphs.

     What is autism acceptance?

     Autism acceptance means embracing and valuing autistic people as autistic people instead of being afraid of us, having low expectations, or trying to find a way to make us not autistic.

     Why should I accept autistic people?

     The Americans With Disabilities Act of says “disability is a natural part of the human experience.” Autism is a natural part of the human experience, and autistic people are members of our community, citizens, friends, family members, and fellow humans. Accepting autistic people is about honoring human diversity and making sure that everyone and is included, valued, and contributing in our society.

     Why should I care about autism acceptance?

     1 in 88 people are autistic. You probably know an autistic person. Autism acceptance means you want us around.

     What does acceptance look like?

     Autism acceptance looks different to different people in different contexts. At its heart, autism acceptance is about accepting autistic people, instead of being afraid of us, having low expectations, or trying to find a way to make us not autistic. That might look like:

  • inclusive education

  • helping your child or your friend learn to use their AAC device

  • fighting stigma and stereotypes about autism and autistic people

  • hiring an autistic person to work for you at the same wage as a comparable non-autistic person

  • snapping your fingers instead of clapping for applause so your autistic coworker isn’t hurt by the noise

  • or making sure autistic people are included and respected in your community and that your community is accessible to us.

Acceptance is not passive tolerance. Acceptance is an action.

     Doesn’t acceptance mean no therapies, no education, no intervention, just letting my kid stay where they are forever? Isn’t acceptance passive?

     No! Acceptance is not passive. Acceptance is an action. Acceptance means doing everything you can so that your autistic child will grow up into the best autistic adult they can be, supporting your autistic friends in a world that is not designed for us, and working to make our world a better, more inclusive, safer place for autistic people of all ages and abilities.

     I am an autistic person, not a person with autism. You cannot separate me from my autism as though it were just an incidental negative trait to be downplayed. It is not something to be minimized, nor do I succeed “in spite of” my autism. I’m autistic when I fail and I’m autistic when I succeed. You’re already aware; now I’d like your acceptance. Autism $peaks doesn’t speak for me.

     You can learn more about autism, self-advocacy, and autism acceptance at AutismAcceptanceMonth.com. Autism Acceptance Month is sponsored by the Autistic Self-Advocacy Network, which can be found online at AutisticAdvocacy.org. 

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    I’m signal boosting this~ ~Mod Mepphy
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