Hi, y’all! Sorry I was silent for so long…. I just never really had anything to talk about prior to now (or the time to write about it thanks to my very crazy schedule). Brief update: I’ve had issues, I’ve had progress, I’ve had fun. But now’s not the time for the “here’s how my life is” stuff….. There’s something far more important, and far more personal, to talk about, a topic I’m struggling to write articles about for a project I want to put together to change how people perceive it……
FYI, this post is basically addressing the "Autism martyr" parents of the Interwebs that I frequently run into in the comments sections of certain articles. So if you're not one of these "my child is suffering! We must cure them of their autism!"-shouting parents, please don't take it personally; it's just a message and it was way easier than typing in the third-person perspective. So the "you" doesn't apply to everyone.
FYI, this post is basically addressing the "Autism martyr" parents of the Interwebs that I frequently run into in the comments sections of certain articles. So if you're not one of these "my child is suffering! We must cure them of their autism!"-shouting parents, please don't take it personally; it's just a message and it was way easier than typing in the third-person perspective. So the "you" doesn't apply to everyone.
This post’s theme songs are all by Linkin Park: Faint, By_myslf, Castle of Glass, Somewhere I Belong, and Nth th End. (Basically, these are all songs I felt express my frustrations towards the neurotypical people who act like they are supporting us, but are actually supporting causes that make them feel better about us.)
Don't Shut Me Up!
“[I am] A little bit of loneliness
A little bit of disregard
Handful of complaints but I can’t help the fact
That everyone can see these scars
[I am] What I want you to want
What I want you to feel
But it’s like no matter what I do
I can’t convince you
To just believe this is real
[So I] Let go
Watching you
Turn your back like you always do
Face away and pretend that I’m not
But I’ll be here ‘cause you’re all that I’ve got.”
--Verse 1 (Mike Shinoda) of “Faint” by Linkin Park
It’s frustrating to be in my position sometimes, when I try to navigate the Interwebs and come across an article about how “Autism is debilitating,” and that “such-and-such groups and corporations are funding research into the causes in the hopes of curing Autism,” and that “parents struggle with their child’s violent outbursts.” Of course, once I peek into the comments sections of these articles, I see so many commenters repeat themselves in a variety of ways with the same ideas, over and over….. “Vaccines cause autism! Here’s a link to this site I trust more than the CDC’s web site!” and “Hey, the gluten-free diet helped so much that my child doesn’t have autism anymore!” and even negative comments from idiot trolls calling people on the Autism Spectrum (people like me) the r-word and making claims that because of (the oft-repeated not-at-all true claims of) our “lack of empathy,” we would become killers that shoot up schools.
Source: deviantArt |
It’s even worse when I try to say something, because there is always going to be people who not only agree with me, but more often than not, people who say that I’m wrong, that I’m “not an expert” and that I have “no clue what these parents are going through,” and should therefore, “get off the internet and let the parents of ‘severely affected children’ do the talking.” Yes, I have received those comments before, here, here and even here! And they piss me off every time!
I know what they’re doing: they don’t want me to speak up and prove these neurotypicals (NTs) wrong, that people on the Spectrum are okay, that we do have difficulties but with the right supports, can have an actual future and function independently, that despite all the talking about how parents “know more than the doctors about what it means to live with autism,” that I’m a member of a the population that has true first-hand experience of living with an Autistic Spectrum Disorder DIFForder (ASD).
I have a few questions, and the most important one is “WHAT THE FUCK?! Why are you ignoring us? Why won’t you shut up for a few minutes and give the microphone to the people you need to listen to--US?!?!” Sure, it’s three questions in one, but at least the point is made….
“[I am] A little bit insecure
A little unconfident
But you don’t understand
I do what I can
And sometimes I don’t make sense
[I am] What you never want to say
But I’ve never had to doubt
It’s like no matter what I do
I can’t convince you
For once just to hear me out
[So I] Let go
Watching you
Turn your back like you always do
Face away and pretend that I’m not
But I’ll be here ‘cause you’re all that I’ve got.”
--Verse 2 (Mike Shinoda) of “Faint” by Linkin Park
Yes, there are all of these groups that want to raise awareness of Autism--but they’re doing it all wrong. Basically, the same message is there--“Autism is an evil disease that ruins lives and makes our sons and daughters less than human, and therefore, rob us of the life we wanted originally: a normal life just like everybody else, without Autism and its difficulties.”
See how insulting that is? (Many people out there may be going, “Hey, you’re exaggerating! We’ve never said that!” But you still did--we don’t always read “between the lines,” but when you talk about us, it’s like, we’re the “angry” gorilla in the room who doesn't care what you say!) Yeah, we may not look like we’re listening, but we still are, despite not looking at the people talking. (It’s basic knowledge: we don’t listen with our eyes!!!! Unless there’s lipreading or sign language involved……)
I want to make a few things clear here: we are human beings, we are neurologically different from you, and this world you NTs have built for yourself is baffling and difficult for us to navigate.
It’s time to shut up and listen to us…… Here’s my side of the situation…..
“How’s the Advocacy Going?” “Well….”
I’m angry as hell. I’m furious, I’m frustrated, I’m enraged….. So often, NTs want to be heard, and are willing to figuratively “talk” over everyone else, including their own sons and daughters, to have their concerns and fears be received by the community. They fail to realize that they’re trivializing us in doing so.
Source: deviantArt |
Which is why I ask you “martyr” parents of Autistic people, who violate our privacy by posting videos of our meltdowns and complain about how we’re throwing tantrums “all the time”, despite our being in a vulnerable emotional state; who ignore our cries for help or misinterpret them as whining-due-to-our-not-having-things-our-way despite the fact that shrieking, crying, screaming, etc., is the most basic and primal forms of communication that we’ve inherited from the apes (providing that you believe in evolution; if you’re a hardcore Creationist, listen up: GOD MADE US THIS WAY! Okay?); who force us to act like everyone else despite our need for self-stimulation (stimming) that includes hand-flapping and rocking back and forth, our need for an environment that doesn’t make us experience sensory overload (which is terrifying, in case you’re wondering), our inability to blend in no matter how much you want or even train us to; who don’t want to be ashamed over having an autistic child, thanks to all the stigma that society attaches to being disabled--Who has more experience with Autism: you or us?
This hurts us more than it helps. However, parents, please don’t be dismissive. I want you to know that you are our partners who help us navigate the world we both share, our protectors, and our guides to that world that confuses us. We do need you to be there for us, to be supportive of our talents, our interests (despite how narrow they can be), our dreams and desires (despite how invisible they are to you, who can’t seem to see past the external behaviors that allow us to process the world that we experience).
Yes, this is mine.... |
Also mine.... |
Each of us experience anxiety, and probably depression; some of us have Post-Traumatic Stress Disorder (PTSD) due to the amount of bullying we’re subjected to during childhood (and sometimes not even bullying--there’s a lot of other stressful points that we experience as traumatic). We have co-occuring conditions that have symptoms that either mask the ASD or even are mistaken for ASD. And people fail to realize that we’re a population as well, and that in every group, there are good people and bad people. And yet, what we experience gets trivialized by the neurotypicals (NTs; people without autism, in other words) because we “can’t possibly feel _________” or “know what it means to _________”. Because we’re autistic. And they’re not.
From quickmeme, because FUCK YES!!! |
And what really pisses me off is how many "martyr" parents just prophesy bleak futures for us!
The Dangers and Evils of Stereotypes and Self-Fulfilling Prophecies
In case you've forgotten, yes: we're a minority, and with every minority, there are stereotypes. The rich white (and sometimes orange) assholes (who are fulfilling the stereotype of rich white assholes) are applying stereotypes to everybody who is not part of their population, as part of their compartmentalized sorting system, categorizing each person with a box-shaped image of what springs to mind when this population is mentioned. They'd stereotype black people as "thugs who engage in crime, are dangerous, form gangs, and love watermelon, fried chicken, and hip hop!" and (lately) Muslims are "terrorists who are a danger to our country; they're always plotting something!" They also stereotype us: autistic people, who "can't do anything worthwhile, will never speak, will never use the toilet properly, won't be able to work or take care of themselves...." BLEH!!!!(Does that sound familiar, anybody?)
From a google search.... |
Here's the issue here: stereotypes feed into self-fulfilling prophecies. Yes, it's the brain's way of simplifying things; in fact, your brain loves you......BUT.......it can be a real asshole at times. Some peoples brains are assholes more often than others, even; this is what happens with depression and anxiety (overly-simplified, of course, since we're keeping things super simple). But if you engage in self-fulfilling prophecies that are echoes of the "autistic individual" stereotype, then you're already doing damage before you do anything that you think would help them. It leads to giving up on opportunities that we could have taken to wow the world, to surprise the assholes, to......*Bill Nye voice* dare I say it...... CHANGE THE WORLD!!!!!
So, as soon as we hear, "She'll never be able to ___________," our hopes and dreams are tainted with your despair. It affects us greatly: "She'll never be able to get/hold down a job" leads to us believing that we'll never succeed in the job hunt, so why bother? "She'll never live on her own," leads us to being that 40-year old who still lives in their parents basements, trapped in low expectations land. It's a real effect that has major implications...... But we can learn; we are great at pattern recognition, so why not use that to our advantage? We see a pattern, we figure out what it means, and we apply it to life. "Getting a job means I get money which means I get to move out and have more freedoms!"
Basically, we’re a population of scholars, who learn as we go through life. Our brains are so often on overdrive that it even keeps us awake late at night, running fast with the premium-level problem-solving programs to the point where we have a hard time getting a good night’s sleep. And though we’re more visible, we’re not as audible to you. Wasn’t there a line in Gregory Maguire's Wicked when there’s a poetry scene--one line goes “Animals should be seen and not heard.” We’re not Animals (or animals, for that matter). We’re not victims--so why are you treating us like that? We don’t need your pity, just your support, patience and understanding (especially in the grocery stores; don’t block the aisles while looking at
the shelves! Because I’m behind you, getting impatient!). We crave routine and scheduled events happening when they happen, because the NT world is too chaotic and loud and bright and smelly and full of people who don’t get the concept of “personal space,” even while walking in the same direction as us. (This last one perturbs me a lot; there would be people walking in the same direction as me having a conversation but they get too close behind me to the point where I could poke them with a metre-/yardstick, which is unnerving--mostly for survival self-defense reasons, like, “Why are you so close to me? Do you want to hurt me?!” This is why I let people pass in front of me, so I don’t get anxious. Because anxious autistics/Aspies are unhappy autistics/Aspies.)
Source: Daily LOLcat blog |
There are things that we do that don’t make sense to you, but it makes sense to us. We’re not always right, but neither are you. And we’re excellent at pattern recognition, and can be expressive in ways that aren’t always verbal. You know, “picture’s worth a thousand words” and all that. Perhaps there are members of our population who have thoughts and ideas too beautiful to be expressed verbally???
This is why it does not suit our needs and interests to be ignored. Perhaps if you listened to us in whatever launguage we use (sign language, Morse code, written word, augmented communication, binary, etc), maybe you’ll be more enlightened to what does and doesn’t work, what hurts and what helps; we’re at the center of the meltdowns you so often complain about, so why not try to understand what has us red-lining explosively with all this pent-up stressful energy??? Why not connect with us through our narrow interests? Why not just get to know us?
We’re more than what meets the visual, aural and tactile senses.
In Summary, With Additional Reading…..
So, what do you say? You ready to shine some light on the situation? Or would you rather continue to keep us trapped in the darkness created by well-intentioned ignorance?
Additional recommended reading for more information:
- Jim Sinclair's "Don't Mourn For Us"
- [Growing Up Aspie] on Facebook
- A reply to an exhausted Autism Mom
- A curt reply to an anti-vaxxer
- An important article on tumblr...... (trigger warning: ableism and child abuse; also, NSFW language)
- The book NeuroTribes, by Steve Silberman--highly recommended!!!
So, there you go..... Some food for thought. If you still disagree, then I'm sorry if I have not made myself more clear, or conveyed my message well enough.
Anyways, don't forget to VACCINATE! Aaaand enjoy your tacquito! (If you need me, I'm hiding in my bunker from all the drunk, insane tourists who are in the area for Musikfest.....)
Source: imgur |