Sunday, April 2, 2017

Humanizing Autism

Typical autism "awareness" does little to shine a light on the very real, very raw humanity of actual autistic people.  We become statistics to memorize, statistics of estimated prevalence data, how much we "cost" society, how many of us have additional conditions such as epilepsy, how many of us are nonspeaking, how many of us have "average to above-average intelligence."  Our humanity is erased in favor of neat, compartmentalized factoids.  With this arrives the exclusion of us from the conversation about ourselves, which, as I shall echo from people who have been doing this much, much longer than I have, is fundamentally antithetical to one of the basic principles of the Disability Rights Movement.

 Autism acceptance is the humanization of autism, because it not only forces one to shift their paradigm regarding how autism is viewed, and in turn, how autistics are viewed, but it actually forces a person to go through the arduous process of gaining our trust.  In a World where we are privy to vices such as bullying, discrimination, segregation, physical and sexual abuse, neglect, and homicide, we need people to see us just as that: human beings, not changelings captured in the midst of the night by an anthropomorphic entity that robbed us of supposedly "normal" childhoods.  

Being autistic is definitely harder.  I don't think any autistic person would deny that.  But demonizing our disability dehumanizes us.  We should be well past that stage of fear, pity, and guilt, but it still runs rampant in most mainstream autism "awareness" campaigns, even if just subtly.  

Want to learn about autism?  See as genuine potential platonic, romantic, and/or professional connections.  Talk to us, even if we do not use verbal speech.  Plenty of us converse in ASL or another sign language, through AAC, through our body language, or a mix of various communication forms.  Collaborate with us on any endeavors that we undertake, but ensure that we are center and front of stage.  Read books, scholarly articles, and essays about the history of the Neurodiversity Movement or the history of the broader Disability Rights Movement.  Reject organizations that do not meaningfully include us in leadership positions with significant executive influence, or only associate with autistics in a patronizing manner.  

 We are everywhere.  It isn't that difficult.

Wednesday, March 1, 2017

National Day of Mourning 2017

This is not a post that I wish I had to do, to be quite honest.  I do not think that anyone in the disability community wishes we had to assert the fact that we are deserving of the same basic civil and human liberties of, that anyone wishes we had to remind people that we are human beings, and that all human beings are deserving of life.

Nonetheless, this is National Day of Mourning, in which we remember the lives of the estimated four-hundred-plus disabled people murdered by those labeled as "parents" and "caregivers" in the past six years, hundreds of more cases dating back to 1980 that can be read about here. 

If you can attend a vigil in your area, please do so.  I was going to be a site coordinator in my own community, but regrettably, home life came first.  I wish that it didn't most of the time, but it did.

I truly wish that I did not live in a World in which #StopKillingUs was not controversial, but sadly, that is not the case.  It is beyond chilling to think that I or my nonspeaking, visibly-autistic cousin could have been murdered as children-- no, scratch that, even now-- and the mainstream media as well as overall society could have such a crass disregard for the lives lost.  

If you are a parent or caregiver of a disabled person, and are SERIOUSLY considering murder and/or suicide, please contact your local authorities or crisis hotline.  For disabled people, parents or caregivers of disabled people, or professionals or educators who work with disabled people, check out ASAN's 2017 Anti-Filicide Toolkit.

Tuesday, December 27, 2016

The Potency Of Autistic Emotions

Hello, everyone.  It's been almost two months since my last post, and for that, I apologize.  Offline writing has required more attention, and a great deal has been going on in my social sphere, particularly in regards to people not in my immediate family-- the few friends that I interact with on a frequent basis.

Speaking of which, that could readily tie-in with the subject of this post: that, of the potency of autistic emotions.  Contrary to the common cultural depiction of autism as being a condition that inhibits one's ability to feel human emotions in a profound manner, all-too often, many autistic people feel far too many emotions, because there is so much to intake in this World (to learn more about this phenomenon, read about the Markram Intense World Theory of Autism.)

The past month-and-a half has been a rollercoaster for me in regards to my emotional state.  For the most part, I was so joyful that I found it difficult to focus (a byproduct of excessive coffee consumption), flapping my hands with such feverish ecstasy, at times, even softly squealing a little bit.  But, of course, life has not been entirely kind to me since I last posted on here, as I have stated in the first paragraph (when is life ever consistently kind to most individuals?), and there have been some days when despair hit me.  And when despair hit me, it hit me hard.  Those happy flaps and squeals became flaps of futile attempts to distract myself from the searing pain deep in the crevices of my soul.  They became anxious flaps of fear, fear of an uncertain future, of things that I cannot ascertain, things that I cannot ascertain that are nothing short of disconcerting to me.  And, just a few days later, after pulling myself out of the darkness of overthinking on matters that do not, per se, require immediate attention, again did I flap happily, squeal slightly, hum, giggle and roar with laughter

Yet, even in my happiness, I struggled to fully comprehend what I was feeling.  Even in my despair, did flickering sparks of joy tease.  Many more times, I did not know what I was feeling at all.  

This is where the currently unrecognized condition known as alexithymia comes into play.  Many autistic people report possessing this condition, marked by an inability to identify one's emotions, articulate and express these emotions, and discern between emotions simultaneously occurring at once.  Though alexithymia is reported to affect about 10% of the non-autistic population, an estimated half of all autistic people also have alexithymia, as this one study on moral acceptability shows in its abstract.  

I am sure that anyone reading this has read, at least once, the June 2016 article on autism and alexithymia from the Scientific American's Spectrum magazine on autism research entitled, "People With Autism Can Read Emotions, Feel Empathy." (I will not link to it, because I personally find it ludicrous that such an article exists, as if it were not obvious that we, too, are human beings subject to feelings, no matter how they are expressed.) How is such a notion groundbreaking, I beg to know?  Ever since the deeply-flawed research of Simon Baron-Cohen and his associates in the 1980's was published and univerally accepted as fact by most professionals who work with autistics and by society at large, there has been what appears to be an ingrained prejudice regarding autistic people that has affected the manner in which we are treated and in which our lives and experiences are discussed.  Autistic people, our families, and our allies and friends have been fighting against this dangerous assumption for decades, and it has not even been acknowledged until earlier this year that, "Hey, maybe autistics do feel emotions; maybe they do have empathy for other people."

 I am only one autistic person, so I cannot speak for all of us, but from my own experience, I have been able to sit down with fellow human beings and literally ache to help them with whatever vices were plauging their lives at that time.  It would be inappropriate for me to go into specifics in order to protect identities, but I have lost sleep ensuring that those who struggle live to see the next day, that those who have been harmed know what resources are at their disposal in order to seek justice for actions taken against them, that the working class in my community have something to eat, that small children have access to educational materials that they may otherwise not receive in the education system.  Tears have been shed for so many people on my end, that I have struggled to care for myself with the knowledge that others were enduring situations that I could not provide an easy fix to, if I could intervene at all.  In my opinion, that is what a wicked state of profound love for others does to an individual, as unhealthy as some of what had happened on my end often can be.  The overwhelming care for others and for what they feel can overflow to a point where I nearly drown myself-- and that, is what causes for me to appear distant.
  
When I am happy, this happiness is often, as I have stated above, ecstatic, full of such exuberant energy that it seems as if I cannot calm myself, a feeling that fills my heart with such joy and is one that I adore.  When I am in despair, the darkness envelopes over my head before it feels as if it is consuming my entire body.  Love, when I feel it, I feel it roughly, and become frantic when the recipient of this love is in pain.  Anger, anger is a burning fume, one that usually is suppressed to a point where which is passes, but when is unleashed, can wreck catastrophic consequences upon myself.  I do not hate, but disdain for an individual or for an idea can run deeply into me and can be a disdain that I meditate upon for a time prior to fully articulating it.

It is crucial to remember-- and store it somewhere in the deepest recesses of your consciousness-- that a part of presuming the competence of autistic people is to remind yourself that just because one's emotions may be expressed atypically, does not mean that they do not exist.  Parents of young autistic children may lament over the fact that their child does not explicitly tell them, "I love you," or proffer affection with physical contact such as kisses and hugs, but it is dangerous to assume that simply because it is not expressed through neurotypical social "norms," that it is not there at all.  In all frankness?  It is better that your child first learns to be able to express their pain, their frustration, their happiness, and so much more, before expressing what you want to hear.

I remember being an autistic five-year-old girl.  Though I had an extraordinary vocabulary for a child at that age, I still, as sensitive as ever, would cry tears of perplexion and of frustration when I could not appropriately express these emotions.  Coping skills naturally developed as I aged, but some autistic children may need guidance in developing these coping skills, which could possibly arise via a mentoring program involving interaction with older, more experienced autistic people (a topic for an entirely different post).  These tears may not have been those of a non-autistic five-year-old, but they were still my form of communicating what I did not at the time possess language to do.  

 Because, as I have stated in the eighth paragraph, emotions are profound, they are messy, and while they can be suppressed for some time, that only does damage to my psyche.

Tuesday, November 1, 2016

Autistics Speaking Day 2016: The Journey From Self-Loathing to Self-Acceptance and the Forging of Identity

Before I go into intricate details for what I want to say for my first ever contribution to the annual Autistics Speaking Day, I want to apologize for not posting the once throughout the month of October.  I wanted to do a post about the intersection of autism in particular or disability in general and queerness, but I not only could not allocate as many resources as I had hoped to find, I also had a great deal occurring in my personal life that prevented me from a regular update of this blog.  I apologize for that.

My post for Autistics Speaking Day is almost, in some manner, a continuation or an elaboration of the first post that I have ever made on this blog of mine, which was my take on person-first as opposed to identity-first language (which you can find here).  In said post, I made the remark upon how I had received the official diagnosis of "Asperger's syndrome" at nine years of age, something incredible being a female, yet in many ways not surprising due to race privilege as well as relative privilege of class.  

I will admit: it was not until earlier this year, around February or March or so, that I had began to learn about neurodiversity, the neurodiversity paradigm, the neurodiversity movement, and about the social model of disability.  Every single day, I am still learning something, be it entirely new content, or reviewing what I had already read, analyzing it, and pondering upon how I could apply it to both my own life and to the work that I could do in my community to further the message of neurodiversity and of acceptance of those who are autistic and have other neurological differences, because the message must be spread to those who may not know that such an alternative to the dominant conversation about autism or about disability in general actually exists.  

I can reminisce upon my toddler years, and kindergarten.  I had no vocabulary to describe why I cried and screamed in a movie theater, saying, "TOO LOUD, TOO LOUD" when all of the other children my age were perfectly quiet other than whispers, and did not have to leave within fifteen minutes of the film, because the theater was an assault on my sense of hearing.  I had no language to describe why I wrapped the string of a balloon around my finger and bounced it around while staring at the other children playing tag at one of my cousin's birthday parties.  I never knew why, in the first two years of elementary school, I could not join in play or conversations with the other children, preferring to meander among the evergreen trees and think to myself, yet playing with my same-age cousins at home was almost like nothing.  How in those years, I could recite random facts about African and South American animals, or various dog, cat, and horse breeds, or sing an entire song from memory, yet the idea of talking to an unrelated child my own age was either daunting or not on my radar out of a lack of interest.  

I remember the day that I was evaluated.  I was rather confused, given that I was in a hospital, yet the "examination room" was little more than a small office where a psychiatric professional asked my mother and I (but primarily my mother) a series of questions in relation to my development and in relation to how I acted and how I learned at that time.  The diagnosis arrived not too long after, and when my mother had told me what this diagnosis was, she described it as a "mild form of autism."

My nine-year-old self was perplexed.  How was I anything like my cousin, who was only a year younger than myself, yet was nonspeaking and had far more complex needs than I did?  How did both of us have autism?  Society's blatant ableism and the subconscious ableism exhibited by many of my family members made me see him as less of a person, and to view myself as inherently superior to him by virtue of carrying the "Asperger's" label.  As a child between the ages of nine and twelve years old, I had internalized what many have come to dub as "Aspie Supremacy."  And regrettably, I did not begin questioning this until about a year ago, let alone begin to dismantle this mindset until earlier this year.  This piece by Mel Baggs of Ballastexistenz articulates perfectly the harm that "Aspie Supremacy" can and does cause, as well as this piece by Lydia Brown of Autistic Hoya, which echoes a great deal of what Baggs states and what I have personally experienced in my childhood, and reiterates the vitality of the autistic identity and its significance in the foundation of a culture and in society at large.
  
 Cue in the sixth and seventh grades, when not only bullying worsened, but harassment began.  Repeatedly, was I deemed as the dreaded "r-word" by quite a few of my neurotypical peers, and by one individual in especial, who was persistent in their crusade against me in both grades (said individual, thankfully, no longer has any sort of relevance to my life).  The school administration, no matter how many times I reported this harassment as well as the harassment that I endured due to my perceived sexual orientation and my size, did nothing to discipline this individual.  I had began to pinch myself whenever my beautiful hands would flap, whenever my large and strong frame would rock in my seat, whenever my protruding brown eyes would gaze up at the ceiling or at the sky and dance with an excited smile on my face, my hands flapping and fingers flicking, a pencil weaved in-between them, with sheer ecstacy.  I fell into a state of "woe-is-me, why did I have to be born autistic?  Why did I have to be born with an inability to make friends, for people to like me?"  My interests at that age were already mostly different from my peers; being autistic, and also secretly embarking on the forging of my queer identity at that time, only further differentiated me from them.  I began down a path of despair that still strikes me at times, but no longer for being autistic.  

As a result of what I had endured, I decided to do online school in the eighth grade.  Aside from falling into a deeper pit of despair that I do not wish to make accessible in detail, I had lost the first person with whom I had felt romantic affections for.  I further began to hate my autism and myself being autistic, blaming it on all of the turmoil that was occurring in my life at the time.  

For my freshman year of high school, I had returned to my local public school due to being unable to tolerate the alienation of being at home all of the time.  I had reunited with some old childhood friends of mine, which improved my life considerably.  Though this year was not without pain that, again, I do not wish to disclose, it was perhaps the first time that I attentively paid heed to ableism in the public school system: in two of my classes, there was an autistic peer of mine, one of whom I now regard as my acquaintance, who was routinely scolded as if they were a small child, both by peers and by members of staff.  This whole arbitrary nature of "high-functioning" and "low-functioning" came into play for the first time for me, as I registered in my mind that both peers and staff members treated me significantly fairer than them, all because I was close enough to a gross approximation of "normal" as I possibly could be.

It was also that year in which I first conceptualized autism as being part of my identity, as an immutable fragment of my essence, without even knowing it: in a deeply-personal essay that I had written for English class that year, I had seen it in the same vein as my race and my sexual orientation, as a part of myself that just is.  I had written about neurology as identity, rather than as this strange thing attached to me through the neurodiversity paradigm without even knowing that such a term as "neurodiversity" even existed.

I had pondered  upon this further in a series of meditations editationsthat were first written over a month-long period between February and March of that year, which while covering a myriad of subjects, had a focal point of both sexual orientation and of neurology as identifying factors.  This is a work in progress that, at some point, in time, I may publish as a book so as to show my evolution of thinking, as well as my journey of self-actualization and of the realization that my neurology and my sexual orientation are but twt two integrated fragments of a whole.

I had rather discovered neurodiversity, its related terms, the many concepts under its umbrella, and the tireless activists promoting the neurodiversity paradigm and the allies of these activists on accident.  After all, the dominant discourse on autism during the month of April every year is that it is something to become "aware" of, something to fear, cure, and eradicate, something where which people who carry the identity of "autistic" are to be pitied, discriminated against, and maltreated.

It is where I had learned that as an autistic person, an autistic queer woman to be precise,  I am not "broken."   I am whole and complete.  That my cousin, though nonspeaking and having far more significant challenges than me, he, too, is whole and complete, and there are activists out there like him who are doing the tough work in hopes that people like him and his peers can lead as autonomous of lives in the community as possible.

Yet, it is with this new knowledge, new insight, and new self-actualization that I must challenge the dominant narrative within my own family and within my own community, you know, the standard splitting the spectrum in half into "high and low-functioning/mild and severe categories," the support of Autism Speaks and its "Light It Up Blue" campaign, the support of the damaging anti-vaccine myths, the prioritization of neurotypical parents and professionals over the voices of actual autistic people, the infantilization and presumption of incompetence of those whom do not speak... The typical issues that activists who have been around far longer than I have, some of whom were working even before I was born, must combat against. 

To my nine-year-old self, I say: Autism presents itself differently on both a genetic and a phenotypical level in all autistic individuals, so of course the two of you are not the same.  You are also, despite having the same diagnostic label, different significantly from the autistic boy whom you follow around on the playground and crack jokes at lunch with every day, because you are unique individual human beings.  Nonetheless, as you will learn, autistic people have something that transcends all of the barriers that you can possibly think of, oi,  and that "something" is the commonality of traits.  The glorious art of stimming, whether you are anxious, afraid, overjoyed, morose: it is one thing that all autistic people do in some way.  The same ableist rhetoric that you use against your cousin, people will use against you in a few years, so watch out, and clean up your own act.

To my thirteen and fourteen-year-old selves, I say: Shh, Baby, don't cry.  Or, cry all that you must, because I'm not so weak as to silence someone in pain.  All of this self-hatred is only bringing you down.  You don't deserve to go through this.  Though being autistic does make many aspects of your life significantly more difficult, and it shouldn't be sugarcoated, it's also why you are growing as both a visual artist and a poet.  It is why your passion for the liberation of marginalized groups in this society is so fiery, and why you weep when you try to plead your case and defend your beliefs, and it feels as if the people immediately in your life simply do not understand.  One of your latest stims, spitting out the lines that shall soon be stitched into poems and that shall persist into late-adolescence?  That is a peculiar yet all at once spectacularly beautiful stim!  Keep doing itit!  Your awakening is coming soon!

I have no idea of as to who I will be next month, in six months, a year, five years, ten, twenty years, and so on...

... But I do know that I shall be an unapologetically proud autistic woman, no matter the circumstances.

Thank you, all of the autistic activists who have paved-- and still do pave-- the path for the autistic children and youth of today.

Your work is underappreciated by so many.  And that is not how it should be.

Disability rights are human rights.