...behind us in allyship...

 From our Team:

For far too long, the “role” of Autism Advocate (particularly during the month of April) has been played by individuals who are not Autistic.

While there is certainly merit to advocacy by those outside the community, we need to acknowledge that their reality is that of an ally and to “play-act” at advocate far too often counteracts or even demolishes the exhausting work of true Autistic advocates.

As so many other Autistics have “said” in their own ways I, too, say this:

“You do not speak for me.

You can not speak for me.

Please stop attempting to fit my needs and my divergence into boxes that suit your neurotypical understanding.”

~~~

What I have seen, year after year, is the voice of my community silenced…spoken over…misrepresented…poorly translated…

What I have seen, year after year, is the neurotypical discomfort with the Autistic response because we don’t write-speak-gameplay in ways that neurotypicals understand or value.

What I have seen, year after year, is the righteously indignant rise up in horrifically abusive manner to “correct”, re-write, or purposefully misinterpret the emotional labor of the Autistic community…all in the name of awareness and advocacy.

• The therapists quick to violate Hipaa by volunteering up “evidence” of their patients’ need to be spoken for and infantilized in intentionally heart-warming, self-congratulating posts that always seem to feature a “poor, misunderstood child” and the therapist as the “only person to reach them”.
• The “autism-moms” who offer up their sacrificial lives in humble brags, complete with privacy-violating photos and films of their children in their most vulnerable and overwhelmed moments. Sharing, without informed consent:the faces, detailed diagnoses, locations/schools/doctors’ offices/homes of their “little warriors” with the online world with pleas for “likes” or “mail for the friendless”.
• The corporations and businesses that fund their vacation packages on the bankruptcy filings of desperate parents searching for the easy button, ramping up their fear-mongering posts and using our very expressions and mannerisms against us.
• The “non-profits” that present their empty coffers and empty hands at the end of every checkout line, with a promise that their works helps “Autism Families”.

What I have also seen, year after year…

Is the work of the Autistic community and its many, many members who continue to put time and energy and effort into translating themselves and their actual needs and wishes into something that the neurotypical world will be able and willing to understand:  

Silenced

Spoken over

Shamed

Abused

Ignored

Harassed

What I have seen…

Are the posts and creative work of Autistics pushed back and tamped down by a deluge of non-Autistic “takes” on what the Autistic experience is.

What I have seen…

Is the social media blue-light special telling Us, the Autistics, that we should be grateful that so many want to speak for us. That our words are not enough, and we should be thankful that others are so willing to share their side of our Autistic experience. That we should feel empowered by their “intended allyship” that centers on how hard we make their daily lives.

What I have seen…

Are my own words and my own efforts twisted back on me, as non-Autistics use their situational-translation-services to rework my writing into something that better supports their own ego-feeding saviorism.

What I have seen…

Are my successes and accomplishments broken down into “therapeutic skill sets”...”achievement unlocked”...as desperate parents and caregivers see my work and want to believe that my individual experiences can be glorified as “HOPE” for their own children.

~Full Stop~

My mother wrote recently:

“What a perfect moment in time it is to sit silently, with open ears and open hearts, and to listen to and learn from those who are living in the world we've created.”

That’s what we, the Autistic community, are asking for.

Please listen to us…please focus on our words and our artworks and our emotional output.

Please amplify our work.

Please allow us, the Autistic, to advocate for ourselves.

Through your silence…

your listening…

your accommodations…

your acceptance…

your inclusion…

your open hearts…

your allyship…

Stand behind us and help us defend our own rights to be seen/heard/recognized/believed.

...call to arms...

From our Team:

Now that we’ve gotten April Fools’ Day out of the way, let’s dispel with the foolishness of

Autism “Awareness” Day…

Once and for all!

A day founded by what the Actually Autistic community deems a hate group (Auti$m $peak$), wrapped up in fear-mongering, masquerading as “help” but, in fact, a million-dollars industry whose science is centered not on supporting neuro-divergent brains and their allies, but on research “into the causes, prevention, treatments and a cure for autism” as stated on their website.

(read also: Eugenics;Light)

For those of you still willing to do the work of reading the words of this Actual Autistic, thank you. I know, my opener was brutal, but…in this case, needs must… The month of April is HARD on our community, as we learn/work/shop surrounded by the battle insignia of a group that deems us as both their pet project, and as less-than-human…a puzzle with missing pieces.

~~~

*Imagine, if you will, purchasing your morning coffee and being asked by your friendly neighborhood barista to donate to a group that daily tells the rest of the world that you are broken/deficient/worthy of being infantilized/to be pitied/to be marginalized. Somehow that first sip just went bitter, didn’t it?

*Imagine dragging yourself into first period, already overstimulated by the hallway congestion and the flickering lights, only to have the same students who daily make fun of your symptomology, suddenly sporting puzzle piece bracelets and shirts and hyping up those volunteer hours they’re earning by “helping people with autism”.

*Imagine standing on line at T.J. Maxx with your mom, both your arms full of clearance-tagged items because the bulk of the household finances goes to the therapy/assistive devices/medications/support services that you need to get on in a world that doesn’t make room for you, only to be shamed for not rounding up your purchase to “help autism families”.

Welcome to April, Autistic style.

~~~

“So what’s to be done?”, you ask.

Simple.

Let’s replace Awareness with ACCEPTANCE. Let’s begin by opening hearts and minds…and most important, eyes and ears…to the true Autistic experience. Ally with those who are Autistic:

~amplify their voices

~validate their experiences

~partner/fundraise/support their efforts to find a place in this world

Stop sporting the emblem of a business that harms our psyches, limits our outcomes, interferes with the provision of functional accommodations, and often damages our relationships. Look to the Actually Autistic community and follow our lead.

~~~

Honor and celebrate the absolute beautiful life-affirming and life-evolving gift that is neurodiversity and neurodivergence with the rainbow infinity symbol.

Call out for Autism ACCEPTANCE with the gold infinity symbol, chosen by Autistics as the first two letters of autism and autistic are "Au" which is the chemical symbol for gold.

Or go

#redinstead

and ally yourself with a movement created by Actual Autistics to help bring acceptance and support to autistic individuals and raise awareness against Auti$m $peak$.

This month we’ll be doing a fair bit of writing, and hopefully dispelling some of the problematic assumptions and beliefs surrounding Autism and neurodivergence as a whole. Among things we plan to address are both topics addressed in Johannes' recent TEDx talk and topics we haven’t yet covered, as well as highlighting some other amazing Autistic voices and creators.

So please, check back often and with an open mind.

Let’s ReBoot the day~the month~the movement and create a world where Autistics like myself are treated as equals. 

...march slumbers...

March Slumbers

I watch the wind from where you lay across me,

safe, slumberous, and tangled in my arms.

You breathe a constant whisper in and out,

that lulls my racing mind and winds down time.

An icy blast that streaks out toward the trees,

its snowy duststorm breaking from our sill.

I hear the roar and see the tree limbs dance,

and whisper lullabies to keep you still.

But days ago, the window's open breeze,

brought birdsong to our quiet corner chair.

I drifted in its music as you dozed,

my hair caught in your grouchy fist.

Time slows there as you nestle in my arms,

and branches dip and sway in their own time.

A sudden flutter, black, that weaves and climbs,

a flock of birds just as you start to stir.

I watch the wind, then screw my eyes shut tight,

counting seconds I might rest before you wake.

...happy 2nd birthday...

 How can there possibly have been a time before you?

Every bit of you is so vibrant...so vital. So absolutely, positively part of me and of us and of life.

There simply isn't a time in which you weren't here and part of everything.

You, little one, are a force of nature.

A bright burning spark that sets fire to the heavens each morning, and twinkles across the midnight black.

You, my son, are a miracle.

A wish...a dream...a prayer come true.

But more than I could have ever imagined.

So very much more.

From lilting melodies of babbles and giggles, to the crashing discordant chords of your fury when the world doesn't bend to your will, to the soothing lullabies of your slumbers safe and secure in my arms.

You are the very music.

Happy 2nd birthday, Henri.

...happy 19th birthday...

 Same energy.

Same soulful eyes... windows to unimaginable worlds where creativity and empathy reign.

Same cautious smile... that only ever cracks a grin for me or Henri.

Same quiet reserve... unless you are with your trusted few.

Same limitless creativity.

Same exponential extrapolation.

Same detail driven perfectionism.

Same indomitable spirit.

Same gentle but immovable giant.

Same defender of the weak, teacher of the inexperienced, ally of the ignored.

Same limitless generosity.

Same solution driven problem solver.

My 'make it better for them, than it was for me' hero. My inspiration. My favourite person. My heart.

Happy 19th birthday, Johannes.

I can't wait to see what you have in store for us this year!

...just yesterday...

Just yesterday I picked you up...all wiggly, wriggly you of giggle-fits and toddler-temper.  I gathered up the whole of you into my arms in one swoop -a perfect, easy fit- brushed sweaty curls off frowny forehead, and whispered "I love you to pieces."...

...and you, momentarily snuggled up and docile, scrunched up both fists and lips and muttered "Mami, I don't want to be in pieces!" and launched yourself out of my hug.

Those simple words stuck to you for weeks...nipping at you just before bed, and poking at you in the middle of our morning prep.  In the rear-view mirror, I'd catch glances of you grimacing and hear your whispered "I don't want to be in pieces".  You worried those careless, carefree words of mine right into a nightmare of missing fingers and lumpy, jumbled limbs.  And I, stifling a giggle at your childish comprehension, spent those weeks reassuring you that I would ever keep you intact and, in fact, loved you whole...wholly.

(That summer I had a puzzle made from a photograph of you.  Pieces, indeed!  What fun we had putting you together over and again!  And then, of course, we had to make more puzzles...one of me, and one for each friend.  Well into fall, you drew puzzle lines across all your artwork, and used your safety-scissors on every piece of paper you could get your hands on!) 

I write this now, caught up in that memory, with an itch...an ache...in my arms for that whirling dervish of little-boy-you ~ for hugs that burned with your feverish energy ~ for the tug of your hands knotting up in my hair ~ for the snuffles of contentment in my ear as you nestled as close as you could, trying to push right through my skin and into my heart.  How I miss those moments you'd tame...wild child to drowsy cherub...with just a little back scratch.  How I miss the way you shook yourself awake as we rocked back and forth in midday sun~lullabying down into naptime.  And I, arms full of you, thinking all the while...

"I love you to pieces."

~~~

Oh, how I miss him...

...and every other you you've been.

I miss them all...

...all your pieces.

They've scattered through the timeline now.  All interwoven...blending into one another as they swirl about.  Blurry round the edges until a spark...a scent or sound or sight...brings one into stark relief and I daydream my way back.  Pieces of you tumbling back through 18 years and spiraling off into the future.  The collected moments of who you've always been...who you're becoming...and every moment in between:

~dried up sprigs of wildflowers offered from grubby hands

~a treasure box of beads and shells from eagle-eyed wanderings

~faded sticky notes and paper scraps with wobbly lettering

~the faintest mark on the mirror from where you'd daily write "I love you, Mami" in the bathtime steam

~a veritable fortune of masterpieces rendered in colored shaving foam, and a tangle of the finest noodle necklaces

~totes upon totes of school papers and reports...of travel brochures and ticket stubs...of birthday cards and lunchnotes and "I love you because..." scribblings

~photographs and videos and voice memos and printed out copies of google hangouts message streams

All your pieces.

I've saved them all...kept the whole of your life intact in the collecting and storing,  as you shed off remnants and left behind the bits and baubles of boyhood...and grew up.

I have loved you from pieces into this whole.

I have loved you into adulthood.

I have loved you to 18...

...the razzle dazzle...

 Last night bled into this morning as the little one, "weekended" right out of his daily schedule, whimpered his way through sleeplessness.  He dozed, fitfully, by my side, waking frequently for the comfort of nursing and the distraction of tangling up in my hair.  I, for my part, played at contortionist, twisting in pretzels round him as he snuggled first this way, then that.   Somewhere around 2a.m., we finally abandoned ship (or...bed) and made the best of it.  Armed with a hot reheat of the good stuff, and a stack of books, we hit the reset button and cozied up in the recliner.  Soon enough, the cat boarded lapside as well, and we made it through the dark hours.  Round about 4:30a.m., both beasties finally fell asleep in my arms and I dropped them off cribside and crawled back into bed...

...just in time for the alarm go to off.
Raowr!
Or, more accurately...whimper!

Another scalding round of leftover coffee and I was ready to grumble my way through our morning routine. (And did a bang up job, I might add! Encore, anyone?)  Finally, with breakfast served and cleared, appetites sated and arguments silenced, I took "my five"...while big bro entertained little bro.

A quick check in on interwebs for the daily news and noise.
A system-scan of email...delete button activated.
A systematic syncing of calendars...both virtual and tangible.
Then...pause...arms crossed, head down...reboot in progress...

...and as I stretched back up, I caught sight of the glow spreading across the floor from our picture window, and swiveled to take in the burning skies on the horizon.  Sunrise, in the winter months here, is an absolute blaze of glory.  Full drama.  Vivid hues paint the skyline in tongues of fire or hyper-colored rainbow-sherbet layers.  The woods at the front of our property are cast in stark contrast...black boughs against heady intensity of all that sudden color. 

They simmer slowly at the start...just a few sparks of orange cresting in the distance.  Then suddenly, they ignite...dazzling the eye. The midwinter cold is momentarily burned away and the whole world seems to radiate golden heat.  But a few moments of life, joyous and radiant and affirming...and then the flames fade into pastels...muddling into the grey of yet another cold winter's morning.

Oh, but those moments...those precious seconds that tick-tock-tick as the phoenix rises...

Those moments as the barren branches suddenly catch fire and burst into flower once more...

Sunrise, 11. January. 2021

Those moments when I drink in the sunrise...charging up like one solar-powered...and feel (perhaps naively, perhaps obstinately) that I can make it through yet another day on mere fumes.

~Leanna