A Little Bit of Loneliness, A Little Bit of Disregard

        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.

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....

You might be saying, "You can't speak for everyone! Your to mild and high-functioning!" One--UGGGHHHHH!!!!!! In this case, it's "you're" not "your", and too, not "to". Two--the functioning polarity (which is what I call it) is complete bull and does not represent the true nature of the Autism Spectrum. And three--You might assume that I don't have struggles, but the reality is that I do struggle with certain things, including social cues. I can’t tell you how often that I’ve embarrassed myself for not knowing the subtle messages of “No, thanks,” or “Please leave me alone,” or even “You’re too annoying, go away.”  And these messages do hurt, but it hurts more when these messages are there and I can’t even pick up on them; after all, if it isn’t said, it isn’t being said, riiiiight?  According to the ways I’ve had to learn them, HELL NO!  It’s as if hinting way too subtly was way more acceptable than explaining in a straightforward manner that you don’t want me to contact you so often, or hang around as a friend, or even be nice to you in a way that I thought you’d appreciate.  Nooooo, it’s way more “acceptable” to just cut all ties without letting me know what I was doing wrong, without giving me a chance to learn and change my ways so I can be better at being a friend or coworker or classmate or neighbor!

Also mine....

I do have troubles.  I do have problems, but they’re not all that visible to you--I have depression, anxiety, and even ADD.  And these co-occurring disabilities (Doctors say “co-morbid”, but that’s too negative; I prefer the more neutral term “co-occurring”.) are what I’m struggling with more, rather than my Asperger’s itself--and it all wears me the hell out!  The anxiety is actually causing so much tension that I’m just craving Massage Therapy to undo all the knots I have lurking in my back. (I’m not kidding!  I get knots too!  First time I got a massage from a friend who took classes, he found three knots. Second time, it was four!  So, really, it was frustrating to feel tight in my back after having such great sleep!  I bet I have seven knots lurking about at this point!)

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!!!

But how would they know?  How would NTs who trivialize what we see, hear, feel, experience, think, etc., know what it’s like to be us?  We’re not lying!  And yes, we’re not looking you in the eyes either, because it’s too intense or painful or just plain hard for us to maintain that focus where we’re talking and aiming our eyes at yours!  We’d have to sacrifice an amount of RAM to be able to appear normal while conversing with NTs who like to pretend to be intelligent or courteous by wasting time talking about things that we don’t value all that often or get confused by.  (Like, “Are you keeping up with the Kardashians?  Kim and Kanye did this the other day!”  My response would be, “I don’t fucking care what the Cardassians are doing!  They need to broker a peace treaty with the Bajorans already!”)  Ask us about the weather, and we’ll give you the forecast for the day, totally serious.  We don’t handle small talk well, we don’t have the programming for “social niceties” already installed (that costs extra for our model of “human being”), and we have a hard time distinguishing sarcasm from genuine expression, understanding the meaning behind idioms that are so ridiculous that we’d rather be straightforward by saying what we mean, and, finally, just navigating the script for social interaction is so hard for us that through painful trial and error over the years, there are those of us who have crafted a neurotypical “persona” (an act, really) to allow us to “pass” in a society that not only doesn’t understand us, but would fear us and ostracize, alienate and bully us for not “fitting in” and being “normal”.

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…..

I understand that you’re frustrated, exhausted, scared, confused, lost, and struggling to figure it all out, and I’m sorry you feel this way.  I want to help you and especially help your son(s) and/or daughter(s).  That’s why I’m offering insight, with the perspective of somone “on the inside”.  Yes, I am aware that when you meet one person with autism, you only meet one person with autism; I don’t have all the same problems as your son(s) and/or daughter(s), but I have experienced similar problems and situations, just like everyone else on the Spectrum.  So what worked for me might help your son(s) and/or daughter(s).

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