Sunday, September 18, 2016

The Face of The Willingness to Understand and The Face of Fear in One Day

Yesterday was the day where I had crossed paths with both an eagerness to understand and to share ideas with, and also a day in which I bumped into one of the most supreme forms of absurdity, ignorance, and fear.

To the individuals that exchanged the former with me: thank you, thank you so, so very much for listening to what I had to say, as well as for sharing with me some of the present actions that you are taking in your lives in order to make this World a much, much better place for autistic people.  I cannot commend you enough for making my heart surge beyond the constraints of the crown of my head, and for reminding me that there are, indeed, great people in the community that are in fact more than willing to learn about concepts that they previously have never been formally introduced to.

As for the latter individual: though I did not verbalize it to you, I feel that my body language should have conveyed more than enough the fact that as soon as you expressed sentiments of people like myself being "vaccine-damaged," that I was hurt and uncomfortable with you in my presence. My rapid speech in response to your attempt to call me "high-functioning" as a compliment, my rapid speech detailing the fact that I do not consider myself "high-functioning" and that I do not believe in functioning labels for a myriad of reasons should have signaled to you the fact that I was, to be frank, extremely distressed with the fact that you would essentially slander an entire group of people-- in this instance, autistic people-- as being the "bad results" that the young man whose words are mentioned in this link so-succinctly states that those who think vaccines are the cause of autism believe.

Latter individual, it is apparent that you are unfamiliar with the work of many autistic self-advocates and activists who do not want to radically alter their existence with a cure for their autism.  I hope that, as being in the top leadership position of a local nonprofit autism organization, that you would be willing to listen and potentially, to shift your paradigm as so many have done.  I know this, myself.  Before I had learned about neurodiversity, the neurodiversity movement, and the neurodiversity paradigm, I used to loathe myself.  I would blame many of my failures on the fact that I was autistic, that I was inherently "inferior" socially and sensorially because I was autistic, my intelligence not enough to compensate for this inferiority.  I used to perceive one of my nonspeaking cousins as lesser to me, not be able to relate to him due to differences that, in retrospect, were highly-insignificant qualifiers in empathizing with and relating to another human being.

Then, I read the words of so many amazing autistic activists, some of them more like myself, who possess highly-articulate verbal abilities, some of them more like my cousin, who are entirely nonspeaking and were dismissed as "intellectually-incompetent" before learning to communicate via other means, to people who are more like your son, who I unfortunately did not have the privilege of meeting yesterday, and who you described as being somewhere in-between.  

I hope that, as so many have done, you are more than willing to listen and to learn.  I would gladly introduce you to the concept of neurodiversity itself, the neurodiversity paradigm, the neurodiversity and the broader disability rights movements, that is, if you are ready and willing to listen to I, an autistic person, voice her thoughts and perceptions unto you.  Had my anxiety not been particularly aggressive in the moment, I would have told you, "I am not a mistake.  Your son is not a mistake.  My cousin is not a mistake.  No human being is a mistake." 

Because that is what anti-vaccine language inevitably is to us autistic people: hurtful, stigmatizing, and excluding.  As this August 2016 study shows, autistic children in particular are persistent victims of murder-suicide-- and I hold a firm conviction that negative rhetoric about autism, including that of its long-debunked link to vaccinations, contributes largely to it.

 The stigma and the fear against autism and against autistic people cannot end if the myth that we are victims of a vast, petrifying conspiracy to rob children of their futures still plagues the Earth.  Neurodiversity, as this 2014 post by Jess Wilson of Diary of a Mom states, does not mean "giving up."  In fact, it means quite the opposite: to see autistic people as full-fledged human beings with a diverse plethora of needs, wants, likes, and dislikes as any other

I am not a mistake.  Your son is not a mistake.  My cousins, my acquaintances, my friends, we are not mistakes.  

We are women, we are men, we are human beings.  Beautiful, whole, and complete autistic men and women-- human beings.  

Sunday, September 11, 2016

Functioning

"I have Asperger's syndrome."

"Oh, so you're 'high-functioning!'  That's good; at least you have a better shot in life than most other people on the autism spectrum!"

"I am autistic."

"You're very obviously 'high-functioning;' you are nothing alike in comparison to my child.  My child can't speak, groom herself, attend a mainstream school, or interact with anyone, whatsoever.  You will likely live on your own; she never will."

When parents of newly-diagnosed autistic children interrogate on as to what labels such as "high-functioning," "moderate-functioning," and "low-functioning" mean, they are often given answers from other parents of autistic children whom do not subscribe to the neurodiversity paradigm, and define these terms-- in particular, the first and the third of these terms-- as being "those who can talk, and those who cannot;" "those who can attend mainstream education, and those who cannot;" and other blanket statements all-too common in the dominant Autism Community.

 However, "functioning" is far messier than merely being able to utilize language in a manner that most people would understand on a regular basis, lacking cognitive delay, and being able to attend primarily mainstream classes with little to no additional support.  As this comic over on the Art of Autism by Rebecca Burgess shows (this same comic, I've included in my very first post)-- the autism spectrum is more or less a particular level of ability in different areas, one that is not linear nor constant.

Let's take Burgess's comic and apply it to myself, shall we?  In the "Language" domain, I would consider myself to be very close to the outer edge-- sure, I script and I can, at times, be echolaliac, but I primarily use my own language in a novel manner.  I lacked a "clinically-significant delay in speech" as a child, and while, when I was younger, I did not comprehend figurative language quite well, nowadays, one could claim that I practically think and speak in figurative language.  I largely feel that this is in part due to the fact that I have written poetry extensively over the past four or five years, yet I also believe it has to deal with my understanding and utilization of language developing at its own pace.  Too many studies focus on the linguistic deficits of autistic people, yet so few, as far as I have discovered, exploit the strengths in language usage that many people on the spectrum possess.

As a young child, my gross motor skills were uncoordinated, at best.  I can clearly recall throwing my arms before my chest whenever I ran, and in retrospect, it was not solely because I often was pretending to be some sort of four-legged mammal: I was granting my body a sense of integration with my environment.  I no longer run like so, yet one thing that I still do in order to feel at one with my surroundings is to occasionally touch the walls or a large piece of furniture when I am navigating the indoors, or to flap my arms while I am out for a run or a walk outside.  My fine motor skills, too, improved as I aged, yet one thing that I still am not fond of is using my body to execute movements in the likes of flips and handstands-- the prospect terrifies me, as I feel this sense of weightlessness overcome my being when this occurs.  After more than a decade of trying for the first time, I can still not ride a bicycle without feeling a wave of panic overcome me. I feel that this is solely pertains to me, as an individual, perhaps, as I have read of quite a few autistic gymnasts, and there are plenty of autistic folks who can ride bicycles.  Using Burgess's conception of the autism spectrum, I would fall perhaps one-third away from the outer edge of the circle.

 My overall perception of this World is very decidedly "autistic," I believe.  I thoroughly and utterly denounce the age-old claims of a "lack of Theory of Mind" of Simon Baron-Cohen and his associates, yet this does not mean that I often struggle to identify the motives of neurotypical people, or people who are otherwise not autistic.  This factor is less disabling when it involves an individual that I have a stronger relationship with, but nonetheless, I sometimes still do not always fully register in my mind what the individual is feeling, thinking, wants, or needs.  I am highly-emotional, yet I am also, at times, a highly-analytical thinker-- analytical thinking being a trait commonly associated with autistic people, emotional thinking perceived to be almost nonexistent in us autistics.  To blow Baron-Cohen's claims of a "lack of Theory of Mind" out of the water, read this brief 2014 article from Psychology Today, which makes note of the "Intense World Theory" of autism, which has been studied as early as 2010 and states that autistics are more empathetic and feel more than they are accredited for being able to.  On Burgess's conception of the autism spectrum, I would place myself about three-quarters away from the outer edge of the circle, closer to the center.  

 My executive functioning skills would be placed about halfway between the outer edge and the center of the circle, I feel.  For the most part, when I compel myself to do something, I will spend as much time on it as I need; however, enjoying to listen to often loud and energetic music while I work, I can, at times, cease what I'm doing to rock, pace, or flap my hands or flick my fingers.  In locations such as school, I can quickly snap out of focus due to the excess stimuli of the other students confabulating among one another and being otherwise distracting-- yet, I can gain focus, once more, fairly quickly.  Many would claim that my stims are what can be distracting, but in fact, they, after a considerable amount of time, get me back into what I am supposed to be doing; many fellow autistics have reported this.  Other factors-- such as how bad my anxiety is that day, or if I had a considerably large amount of coffee-- can either enhance or hinder upon my executive functioning skills.  I also feel that I can multitask better than some autistics that I know; but, again, other factors come into play and determine how well I can multitask on a specific day.
  
My sensory issues!  Ah, how autistic that they are!  According to Burgess's conception of the autism spectrum, I would place myself perhaps two-thirds away from the center of the circle.  Loud noises, on many days, can prove themselves to be obnoxious, if not petrifying; I can wear little more than sneakers with cotton socks, and shirts and pants or shorts that are primarily or exclusively cotton (and they cannot be tight-fitting); the only flip-flops in the summer that I enjoy wearing are of the Rainbow Sandals brand, crafted of hemp and in a men's size; and, when an individual who is only a mere acquaintance touches me, I grow tense.  I would, overall, characterize myself as hypersensitive to a great deal of sensory input most of the time; yet, there are indeed days where this hypersensitivity can prove itself to be better or worse.  Many autistics can be more hypersensitive to certain input than I am, and then there are many sensory-seeking, hyposensitive autistic people.  Whether an autistic is hypersensitive or hyposensitive, this lack of sensory integration with the environment can prove itself to potentially be, at the very least, frustrating, if not painful.  I tend to have shutdowns more than meltdowns, but I know of autistic people who are the opposite of this.

In sum, the autism spectrum is not this straight, flawless line ranging from "low-functioning" autism to "Asperger's syndrome:" rather, it is, as I have mentioned above, a collection of traits across a myriad of areas, some traits being more stereotypically "autistic" than others.  One of my autistic cousins-- who is nonspeaking and also has intellectual disability--  has more confidence in approaching other people than I do, the supposedly highly-articulate and intelligent "high-functioning" autistic.  An autistic acquaintance of mine who is considered as "low-functioning" is a terrific artist, though they have difficulty with motor coordination.  And, yet another one of my autistic acquaintances, though their language capabilities are highly-comparable to my own, has poor social skills and sensory issues, and their executive dysfunction can prove itself to be as frustrating to them as mine are to me.  

I think that a great summary of this debate between "low-functioning" and "high-functioning" can be found in this May 2015 article on Respectfully Connected, an online parenting magazine that is all about raising autistic and other neurodivergent children with the neurodiversity paradigm.  

"High-functioning" denies aid.  "Low-functioning" denies agency.  Let's focus upon the needs of autistic people, no matter their specific diagnosis, no matter how they communicate, and no matter what their level of "intellect" is, and build upon their strengths while at the same time addressing their weaknesses.