Autism AWARENESS is Multi-Faceted

During autism testing when I received a diagnosis in adulthood, nearly 20 years ago now, it was ‘revealed’ that I have a college level understanding of many things involving words, literature, etc. but I have a 5th grade level maths ability. My skills are uneven. I struggle to imagine the difference between 

A  million and 

A billion. (Perhaps lots of us do, because most of us don’t handle these numbers with any familiarity)… 

I ‘get’ that both are numbers, of course. But it’s hard for me to imagine where all the zeros are placed, and just how vastly distinct these large numbers are in comparison to each other. 

I’ve read where a million seconds equals 12 days, 

and that a billion seconds equals 31 years. 

It’s through thinking of the numbers in this different way, from a different perspective, that I get some concept of them.

With the 9th ” #World Autism Awareness Day ” (or is it month long?) coming up on April 2nd, it’s relevant to say that not everyone’s experience with autism is the same; in fact it’s challenging to accurately try and grasp just how disparately distinct– individual experiences are. I can only relate my own.

In other brief news:

The above painting SOLD last month. The remaining artworks I have will go to Hynes Center, Boston in April. I look forward to seeing @ElizabethStringerKeefe and Boston again. I’m participating in NYC Piece De Resistance show too in May. 

When I create “puzzle piece paintings” I feel obliged to state that I don’t use puzzle pieces in mixed media art because they “symbolize” autism. I’m not even sure how I feel about the puzzle piece as an autism ”symbol.” I’m certainly going to respect those who come down on the side of not liking the symbol, (many hate the puzzle piece) and I’m going to respect the POV that so many people like it.

 I’ve thought about it a long time, and I find that I have no strong feelings one way or another as to whether a puzzle piece should symbolize autism.  I use puzzle pieces in art because I find them fun to work with!

Nothing more or less. I have never perceived the puzzle piece as symbolizing we’ve got something missing. But some people do. I use it as a paper source for colorful art. 

That brings me to the “Light It Up Blue” campaign to raise (international) autism awareness. Some people use the color yellow instead –because the Blue campaign is generally an Autism Speaks thing and they’re controversial for completely VALID reasons of which I choose to skim over here briefly. 

Many have said, “Autism Speaks Doesn’t Speak For Me,” but I am not going to be confrontational, stubborn, or judgmental about people who wish to express sincere ‘awareness raising’ with whatever color of choice that may be. Support whomever!

Buy a green lightbulb (that’s blue and yellow put together) for your porch-light if you wish, that’s up to you! I do have strong opinions but my purpose here is not to fan flames.

Perhaps most controversial Autism Speaks trigger points are:

Where funds are allocated. Their support of JRC (Judge Rotenberg Center) even though they were investigated for shock therapy use, harmful restraints and food deprivation among patients. Questionable POV about cure, eugenics, human rights violations. A mindset that autism equals heartache, tragedy, and ruined lives.

I try not to be “political” and my days of online debate with fingers flying over the keyboard are passed. 

I have a safety pin. I sent peace flags to the White House as part of Art of Autism’s peace push. I like to garden. And mind my own business. See how my morning glories have sprouted from seed:

I resist! I crusade from my introverted cat corner. Yes she can. 

But hot, flaming, I-am-right-you-are-wrong-you-will-never-realize-that-my-struggle-is-worse-than-yours mentality makes me feel physically ill and emotionally spent. 

Every year I come across voices (All voices are important) hating “autism awareness” bc they say, HFAs are not truly appreciating LFAs. 

I know the value of having a voice (my writing, my art) bc I know the humiliation, sadness, frustration, and anger- 

of not having one. And being used and misunderstood, overlooked, cast aside and even taken advantaged of, bullied and misused because of it. 

What you focus on grows! Fertilize one plant, ignore the other -and this is a tangible example of how this works. Positivity brings same. Focus  on triumphs, skillsets, abilities (and these look different to every individual).

With Valerie Paradiz, PhD, Jamie T. Richardson, and Stephen Shore, Ed.D. (whom I had the pleasure of finally meeting in person in 2016 after decades of online acquaintance) on board now at Autism Speaks, I absolutely feel strongly that positive changes like accentuation on personal strengths and self-advocacy are going to bring a whole new Autism Speaks into being. I have faith in this. .  .  For all of us, no matter where we fall on the spectrum.

For the record, I’m not anti- NT (neurotypical). Have I felt anger toward many an NT who was unwilling to attempt understanding and to come to a happy medium? Yes. Are many people who neurologically typical, unbending, unfair and rigid in beliefs? Oh yes, and the reverse is true as well. 

Hell, I wrote a book on my experience, and still, some people who’ve read it do not get it. Perhaps I need to be better at clarification. 🙂 

 I don’t believe that “us against them” mentalities are positive in the long run. Not in the autism community, and not in the world in general that we share with other humans. 

Sometimes the world makes me sad. My strong environmental concerns have inspired many tree paintings this year… Trees that howl. Scream. Sing. Speak.

I’ve met NTs and autistics too, who all vary in compassion levels, ability to listen to all POVs, and to reason intelligently, and to respect boundaries and limitations without judgment, and I have come to the Swiss impasse so to speak. 

What I mean is, lots of people infuriate me (and I’m lowkey and hard to anger) so while a neurologically “typical” person can NOT understand my cognitive, sensory, social, mental, and neurological human experience, I know I cannot truly understand theirs either. I relate best to open ended people; one on one, that is to say people who aren’t quick to stereotype, who don’t pigeonhole and want to discuss something other than surface fluff. 

Another debate-provoking topic that surfaces occasionally, but especially during awareness anniversaries, tends to be person first language. 

Now, keep in mind I AM a Grammar Nazi. I am pedantic to a fault, annoyingly so. I love words. I bore people with them. As a keeper, collector, lover of language, I get protective of its use. I mean, I’ve lifelong selective mutism, I know what it’s like to have NO voice. That having been said:

Am I an autistic person or a person with autism?

This question I have heard going round since the 90s. In the long run, both ‘sides’ will have a list of why their version is the right one. I wish there weren’t sides. But there are and some folks will furiously defend the case that they are without a doubt a supporter of this or that and they will INSIST you ‘join’ their righteousness. 

If someone still disagrees after I’ve given my reasons, and I’ve considered their argument thoughtfully, I let. It. Go. It simply is not that important overall. 

It’s interesting to note that The Smithsonian has this non-person-first stance:

I personally think “I am an autistic person” sounds better to me, and I am just not in the mood to explain why, nor do I intend this blog to be a catalyst for debate. and yadayadayada

Every year at this time, I understand the importance of autism awareness Day. Or week or month. No one was diagnosing me in the 60s and 70s. They needed awareness then and we need it now too. 

I have to think about autism of course, as do many people I love-

every day of the year.

For those of us who know a child or adult on the less able end of the autism spectrum, there will be Autism Awareness Day Protesting. I get that. A person who is not verbal for example, (like T., a young lady I haven’t seen in a while and dearly love,) will have completely different needs and challenges than myself or people like me, and I am incidentally someone who has tried to function at my best on any given day moment to moment despite the cruel sensory shitshow I know and love as: the world I navigate. I would never minimize the self proclaimed quite real struggle of carers of (for lack of better terminology) lower functioning autistics. I ask that in fairness, don’t minimize my experience either.

When ‘higher functioning’ autistics feel the need to hide or blend like scenery props or to expend energy on passing for normal 24-7,  they are like shadows walking through their lives and they give up pieces of themselves; I know something about that. 

A dear friend Polly once told me that when “I began to meet other people (my people, regardless of function and ability) on the spectrum who functioned at levels different from mine, I would feel a belonging such as I have never known.”

She was right. Autism awareness day, it will come and go, people will give lectures, glue puzzle jewelry art, or not, light up colors of their choice, or boycott the whole thing, create artworks, write moving blogs and protest blogs (this is neither) and so forth. We’ve all got our own reality. I am just trying to make it on the skills I’ve been given in life:

writing.

Art.

I’m not big on self promotion, quite frankly I’m not very good at it, but because I view my writing as a positive form of expression, here’s a passage from my book of my experience:

Chapter Three: Uncle Rooster

I was about five. We were visiting Grandma in Vermont.

Relatives were gathered in the kitchen all around the Formica table; gabbing, laughing, swearing, eating, and smoking. Cousins darted after each other, more boisterous than I dared be. I sat on Daddy’s lap, blurring and staring into nothing; stuck in good between the table’s edge and his stomach. Voices were rising and falling; undecipherable gibberish. I was staring. I didn’t know it was Uncle Rodney’s voice asking me a question until I heard my father explaining me.

“Here,” Daddy said. He tossed Rodney the cigarette pack. It skimmed across the table in a whisper- swoosh! Then Daddy said, “Kimmy won’t pass these to ya.” She doesn’t touch ’em. Never has. She goes way out of her way to avoid ’em. Heh, heh.”

Uncle Rodney looked at me as if for the first time ever.

Shaking, I dared see his face. A long man who tended to dart about quickly, he had a gravelly voice that tumbled out of a pasted-on Cheshire cat grin. My father’s word for him was “cocky.” I thought of “rooster” when I heard that word and so my father’s word seemed to fit Rodney.

“That so? Doesn’t touch ’em?” said Uncle Rodney. He shoved the pack across the table toward me as if we were playing some game together. I jerked my hand away in time. From the missile. The pack skidded across the table right to where my hand had been moments before!

“I asked Kimmy to pass ’em,” Uncle Rodney said, grinning. Yikesyikesyikesyikes. I couldn’t breathe.

“Let it go, Rod. Heh, heh,” My father laughed. “She won’t. She never has. I don’t know why she’s like that.”

Good. It’s all explained. Get on with playing, cousins. I tilted my head to see into my father’s face and saw the stubble there. He was smiling cockeyed lopsided at me. What was worse, Daddy was averting his gaze from everyone. An outgoing man, he always looked people in the face. When we were out in public together and he held my hand, I wore his essence like a familiar mitten. The aunts and uncles were looking at me now too, not just Daddy. Even the cousins had ceased their darting about to glare at me. The humming voices stopped.

I tried to make my get-away but I was wedged in too tight. My throat felt constricted. It happened so fast! Uncle Rodney leapt up, the sound of his metal-legged chair screaming the way I should have. He rubbed the crinkle of that pack all over my arms and face. Bits of tobacco, the antithesis of the flower stamens I loved to dissect, were sprinkling out and tainting me. I whipped my face from side to side to avoid contact with the cigarette pack. He towered over me, grinding it into my cheeks. And my hair. My ears. Soon my face was wet with waterfall tears. The sound of the pack crinkling in my ears was more than I could stand. I dared not swat at it for fear of touching it.

“Gonna git you! Bad ciggie gonna git you!” Uncle Rodney taunted. I willed the cousins and aunts to swarm him like a mad sci-fi thriller plot and reveal hidden stingers from their backsides. No one heeded my thought vibes. Then nothing. Grandma’s rooster clock made a startlingly loud click. Click. Click.

Uncle Rodney sat down and leaned back against his chair, lighting a bent cigarette from the wadded pack he’d terrorized me with. He smoked like a cartoon villain. Silence reined in the kitchen except that I could hear his amusement. He was laughing. It was high-pitched like a shriek. He asked my father something then, quite seriously, “How long she been like that, Joe? If that ain’t the damnedest thing.” Always the wonder in the voice when the people tried to figure me out. I did not hear my father’s answer if there was one. I managed to wriggle onto my feet at last. I could hear no more and see no one. I spun in a slow circle with my soiled arms held straight out and I cried with no sound.

 

I was

a deaf,

mute and

blind kid.

((((((((END OF BOOK PASSAGE.))))))) 

I chose that passage because

It’s an example of me being able to have compassion for Uncle Rooster’s inability to be sensitive to my sensitivities. 

It demonstrates two very different people, he and I and our different ways to perceive the same world. 

April autism Awareness also has a unique kaleidoscope of people who see situations their own unique ways. 

My book is available on Amazon at the link at the end of this blog post. 

In recent news, I was able to meet some very interesting students at a collage workshop I “instructed” in Massachusetts @GoodPurposeGallery. In one photo is me, with students and Trish. In the other picture I am trying to decide if the beautiful plant in the window is real. It certainly was!

 Have you heard of SugarArt4Autism? Last year, cake artists at an international level, for April’s awareness day, selected artwork by autists and reproduced them on cakes. Imagine my surprise when I was contacted  out of the blue yesterday with the news that @Enrique, of #HaveSomeCake, Birmingham England, selected one of my paintings as inspiration for a cake creation this year. 

I’m so flattered and can’t wait to see which painting he chose. I’ll share as soon as I find out- on April 2nd when the cake is revealed. I elected to be surprised. I only wish I could taste the finish cake. 

Whatever your experience, your views, your voice, it’s relevant. 

I’ve never seen a million dollars. I’ve also never seen a billion$, but that doesn’t mean they don’t exist just because I have never physically seen that much money. 

I am very different from a lot of my peers (who I respect and admire very much) who are able to give TedTalks, orate fluently, and give speeches with confident clarity. My voice is in paintings and books and essays. 

I am not a public speaker, yet, and I focus on the possibility that that type of voice exists within me, in fervent hope that it will manifest one day.

IT COULD HAPPEN.

MY BOOK available here:

https://www.amazon.com/Under-Banana-Moon-Living-Aspergers/dp/150572886X