...my words > your understanding...

 From our Team:

We’re four days in to April, and I’m already running out of steam.

Reality check:

Consuming the laborious efforts of autistic advocates and then having the audacity to argue with them in the comments section because your neuro-typical self can’t be bothered to “do the research” is 100% equal to silencing the oppressed.

• We have, for far too long, been driven ‘underground’ and run off our own homefield by the very loud voices of the righteously indignant non-autistic advocates.
• We have, for far too long, been hit on all sides by never-ending requests and requirements to reframe our communication to better suit the neurotypical narrative.
• We have, for far too long, been purposefully and with intent exhausted of our own mental energy by the needless nonsense and the relentless justifications of those who insist that the puzzle piece is “doing such good” and that families affected by autism matter so much more than our actually Autistic selves/voices/work.

And for what?

So that we can spend the entire month of April being closed in all sides by blue lights,

and puzzle pieces,

and practical strangers (if not the actual bullies who’ve harassed us in school for years) thinking it’s completely appropriate to barrage us with questions about being autistic.

What is this thing you call privacy?

Oh…it only applies to you.

Got it.

#headdesk

Reality check:

Autism is Neurodivergence.

Neuro-Divergence.

Divergent:adjective

• the process or state of diverging:
• a drawing apart (as of lines extending from a common center)
• DIFFERENCE, DISAGREEMENT
• a deviation from a course or standard
• (of opinions, views, etc.) different; no longer similar

Divergent. The very state of being different.

Autistic. The very state of being different.

My words

don’t need to be altered for you to better understand them.

Your understanding

needs to be altered by them.

...it is also ok...

From the mother:

My quick word to my community?

It's okay to only now realize that your good intentions were ill-advised and doing more harm than good...so long as you willingly course-correct.

It's okay to walk back on things you've said and posted and believed...and, in the light of Autistic truth, disavow those ideologies and delete those posts and shares and photos and videos.

It's okay to apologize.

It's okay to move forward in ways that support and amplify instead of redirecting or muting.

It's okay to learn and grow.

“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.”

...it is ok...

From the autistic:

 Just a quick word of advice to my community during this month of April.

It is ok to be silent.

It is ok to "go dark".

It is ok to walk away from the whole steaming pile and not offer to help put it out.

You can unfollow people in your feed.

You can mute individuals and groups.

You can disable comments.

Do what keeps your heart intact and your soul safe.

...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.