Autistics Speaking Day Demonstrates what "Nothing About us Without Us" Actually Means

 Ira Eidle posts "Autistics Speaking Day Demonstrates what "Nothing About us Without Us" Actually Means" on History of the Neurodiversity Movement at Autistic Archive

Autistics Speaking Day is a perfect example of what the term “Nothing About Us Without Us” actually means. An Australia-based organization called the AEIOU Foundation proposed a “communication shutdown” on November 1st, 2010 to represent the supposed frustration autistic people face with communication. This meant spending an entire day off of social media. Autistic people found out about this, and found it to be very patronizing and missing the mark.

As you’ve seen, autistic people tend to find the internet to be a bastion of communication and comradery, a lifeline, even. Two autistics in particular, Corina Becker and Kat Bjørnstad, decided to take action and form a blog. They reclaimed the day to showcase the writings of autistic people. They also wanted to take a jab at Autism Speaks’s name, so it was titled “Autistics Speaking Day”. It’s now observed on November 1st every year.

Let me explain what “Nothing About Us Without Us” actually means. Many people do not seem to understand that. It was a term first used in Hungarian Labor organizing, then again in South African Apartheid protests, and eventually as part of the Disability Rights Movement. It is also ASAN’s slogan. What it does mean is that nothing about a group of people, in this case people with disabilities, should be done without their meaningful leadership. What it does not mean is that people with disabilities literally have to be involved with everything disability-related, including things where they are not in charge and are instead used as tokens.

People use “Nothing About Us Without Us” to justify working with harmful organizations, because they think the statement means they need to be at the table all the time with everything. In an ideal world, yes, this would be the case. But the reality is that many times, when we’re invited to the table, we get nothing but scraps. That is not meaningful inclusion nor leadership, and thus, it is not consistent with “Nothing About Us Without Us”. It also means when something is not done with meaningful inclusion, that the people the cause is about will speak up about it, even if they aren’t at the table. Especially if they aren’t, in fact.

In this case, Corina and Kat didn’t need to join the AEIOU Foundation’s leadership to enact the change they wanted from within. Instead, they formed their own thing where they were in charge and gave a mic to other autistic people. “Nothing About Us Without Us” is inherently a saying of protest, of revolution, and working from within is not protest. It doesn’t mean never try negotiations, just that negotiations are not required for it to be true.

Autistic Out Loud: an essay on Stimming and Autism Acceptance

Devin S. Turk posts Autistic Out Loud: an essay on Stimming and Autism Acceptance

"I can only describe the feeling “fizzy,” like fountain soda under my skin. The sensation starts in my shoulders, and by the time it travels down to my elbows, I’m already in motion. My hands become a blur; they move back-and-forth, up-and-down, in joyous, swooping arcs. After a moment, my arms are still again. The fizz has subsided. I exhale. This is what it’s like for me to flap my hands. I am autistic. And in this busy world of loud noises, bright lights, and complex social interactions, my body and my brain are frequently more overwhelmed and exhausted than that of a neurotypical person. The ways I absorb sensory information from my surroundings, how I interact with other people, and my patterns of self-stimulatory “stimming” movements are all parts of my Autism. Rocking back and forth, spinning objects, vocalizing, attentively listening to certain sounds, etc. are examples of stimming. Stimming is a part of my daily life. For autistic people like me, it can be a reflexive reaction to stimuli (or lack thereof) in our environment, a way of expressing emotion, communicative output, or any combination of those things. Stimming is a natural way for us to be present within the world, and it is essential to the wellbeing of many, if not most, autistic people.  But our Neurotypical society doesn’t see it that way. Obviously autistic or otherwise non-normative body movements are often understood by non-autistics to be demonstrations of everything our society discourages: Other-ness, pathology, and even sub-humanity. As autistics, we tend to get the message to differing degrees relatively soon after birth. Some of us are traumatized in early life by “therapies” that are designed to make us indistinguishable from our peers; to stifle us, to quiet us, and to shrink us down into something more digestible to the neurotypical gaze. Many of us are bullied at school and sometimes even at home. Even if we aren’t ourselves victims of physical or emotional violence for being different, we are often witnesses to such abuse directed at others like us. One way or another, we watch as our world discourages difference at all costs. The world (and all of its loud noises, sudden movements, and complex social interactions) is often too loud, too much, and too exhausting. And on top of it all, suppressing my need to stim feels like more than just resisting an urge to cough or laugh or smile; it feels like a betrayal. I am sending a message to my body and my mind: Your natural ways of being are unacceptable. If I determine that it’s safe for me to stim, (and certain environments and situations are not safe to be recognized as neurodivergent) then I need to stim. As an autistic person, one of the most radical acts of self-proclamation I can engage in during my day-to-day life is as simple as flapping my hands. It doesn’t matter if I’m alone in my apartment or if I'm in a crowded, public space. Visibly autistic movement is one of the most powerful ways that I as an autistic person can claim self-worth in this world. I wish I had grown up knowing that stimming when I need to stim is a way of telling myself that who I am is okay.

Eh, Who Needs A Brain Anyway?

Cat Daly, Eh, Who Needs A Brain Anyway? on YouTube


Tagged as both Trigger Warning and Trigger Free due to animation and subjective nature of film.

Florencia Ardon, Why do we teach our kids to "behave"? on Neuroamazing

Why do we teach our kids to “behave”?

Are you teaching your child to “behave” for their benefit? Or yours?

Some behaviors or characteristics of autistic people can be dangerous. Like not sensing danger, and just darting toward a busy street. Or leaning “too” forward on a banister, not recognizing one can actually fall. Some others can get them in danger or can endanger, say, priceless museum pieces. In that category I would put bumping hard into people, which could make the other person respond in anger and actually hit you. Or leaning against a showcase full of antique, glass works of art, in a way that could make them break.

But in many other cases, the behavior is not dangerous, probably makes the person happy, or helps them deal with anxiety. We don’t try to change that behavior for the wellbeing or safety of the autistic child. We do it for us. I participated yesterday in a survey that made this fairly clear. It contained some statements one had to agree or disagree with. Some of the statements read something like this: “We don’t go out in public because my child’s behavior embarrasses me.” “I have to constantly explain my child has autism because of his or her behaviors.”

[six second clip of young child in a snowsuit, sitting in the snow stomping feet and hands in a small tantrum]

This reminds me of the typical scene of a child throwing a temper tantrum in the middle of the supermarket. What many times happens is that the parent (normally the mother) is close to the child trying to control the situation, and looking around to see the reactions of the people around. If there is nobody around, or people just smile and go away, then that’s fine. But if people start lecturing the parent, looking at her disapprovingly, and so on, what can and does happen too often is that the child gets punished: spanked in some cases, yelled at, or carried out of the store while the child is trying to free themselves (which can be dangerous, by the way, depending on the agility and strength of the child). And this is the “approved parenting style” in our society.

One of the problems with this is that that societal approved parenting styleMR does not work (and by the by, “time outs” don’t work either). One response that works in the long run is to ignore the child, though how you do it matters… and note that here I’m considering we’re speaking about a temper tantrum, not a meltdown. For a meltdown, you need to know what caused it and what helps the child the most.

Now, if you do a quick search on YouTube, you will see videos shaming parents who are actively ignoring their kids… and also shaming parents who are physically punishing their children. Meaning, you are never free of criticism. Unless you never ever take your kid out into a public space.

The biggest problem is that you pay more attention to the feelings or to the approval of people you don’t know at all. You put their feelings well above your child’s. And you will never see these people again! They will gladly post a video of you and your child to happily shame you. And you’re supposed to love your child more than anything in the world, yet are more invested in gaining the stranger’s approval than in not harming your relationship with your child.

Is it worth it?

NO.

Just stop paying attention to the other people.

If your child is on the spectrum (or has ADHD or any of the other conditions that could lead to similar behaviors) the “embarrassing” behavior can happen when they are 2-3 years old like it happens with “neurotypical” kids, but it can also happen when they’re 6, or 9, or 12. So what?

Sure, that person is looking down on you. Sure, they’ll get home and you’ll be the dinner conversation. Sure, they’ll feel superior to you because that would never happen to them, because their child behaves. They are raising their child to obey, and respect their parents, not like these new age/hippie/millennials/whatever parents who don’t know how to properly raise a child. They don’t know you, don’t know your story, don’t know what you’ve tried or not, what has worked and what has backfired. How much you slept last night or if you slept at all.

And they don’t care.

You. Should. Not. Care. Either.

Let them think whatever they want. Let them speak about you. You don’t know them and you would not want to be their friend anyway.

Care for your child. Your child is the one waiting for you at home. Is the one having dinner with you. And the one you hug in the mornings, and kiss good night when they go to sleep.

The rest of the world is out there, outside your home, and does not matter.

Does the happy autist have a history?

Adelaide Dupont submits Does the happy autist have a history? from Halfway up Rysy Peak

Trigger Warnings for genitalia mutilations, child marriages, historical mention of cure, historical mention of research, emotional labour, gangs, bullying behaviour, happiness as tool of social control, denialism, oppression, medical mismanagement, pseudoscience, florescent street lighting, and human intentional betrayal

We have no past 

We won't reach back

Keep with me
forward all through the night [Lauper 1980ish].

And there is a chance under these white street lamps and with the maps which got us through to the street.

My question is Does the happy autist have a history?

When I was with you all at #31for21 it was as a guest and with the courtesies observed that would be proper and expected of a guest.

Who do I mean by the happy autist? Of course I mean each individual autist and their happinesses whether or not I know them/you.

I also mean something reified - something abstract. Something you might well have seen in the media and tried to reach.

You might say as you read this, "I am a happy autist. I have a history."

Or: "My happiness and my history was lost, stolen or mislaid at some point or another".

Somatics on the Spectrum

Vanissar Tarakali sends us Somatics on the Spectrum on YouTube


Content Warning for sound quality, length of video (1 hour), and description of alternative medicine (somatics)

Adventures of an autistic business owner

Paula Jones sends us Adventures of an autistic business owner from YouTube

(Content warning for the use of ableist slur)

Force of Habit

Tamsin Parker sends in Force of Habit on Vimeo.

Tamsin was a finalist in the National Autistic Society's Autism Uncut Film and Media Awards. 

Please check it out!

The Heart Asks For Pleasure First

Cyndi (butterflyinthewell on Tumblr) posts The Heart Asks For Pleasure First

This is a music video where I sing a cover of "The Heart Asks For Pleasure First" by Nightwish. Story of the video: Society's stigma shrouds the autistic Butterfly Girl. She tries to pass as neurotypical, yet spends much of her time remembering how it felt to be her truest self. Then she rediscovers the joy of stimming, breaks herself out of society's expectations of 'normal' and vows to never pretend to be something she's not again. Lyrics: Silent night surrounding me On the shore of wistful sea A kindest heart made me believe The world as I wish it to be Wind in the wheat Kiss by a hearth Little hideaways for a lonely heart Passed away in beauty's doom The good in me the child within A cruelest heart made me forget The world as I wish it to be Home inside but lost for life Human heart longing for love Slave to the toil this mortal coil The strife the suffering the void Wind in the wheat Kiss by a hearth A dead calm winter morn Morning birds and a smile of a stranger Frozen moments in time Little hideaways, the marrow of life Little hideaways for a lonely heart Wind in the wheat Kiss by a hearth Little hideaways for a lonely heart Silent night surrounding me On the shore of wistful sea A kindest heart made me believe The world as I wish it to be

Guerilla Aspies on the 2015 Edinburgh Fringe - Preamble

Paul Wady has sent in "Guerilla Aspies on the 2015 Edinburgh Fringe - Preamble" on YouTube

(a little bit of a warning, there's some background noise in the video)

I have been married to Aspie Elizabeth 8 years this December and worked for the National Autistic Society UK for 10 years next January. I wrote the Guerilla Aspies book and am touring a show that converts audiences to autism. I have set up and led social groups for aspies, made training films for the Nas, do training around the UK for Nas and work for the Brokerage department. What else can I do???

We are a subset of humanity and by the end of this century all frames of reference on neurodiversity will be completely different. We will not be a disorder, we will be a different form of neurology that when we are on top of our natures, is perfectly functional and acceptable. it is when aspie nature gets the better of us that we are relatively disabled. Compared to What? Super achievers? Who sets the bar for functionality in the world? Someone get me a universal standard for neurotypicality???

Thoughts On The Spectrum

Ultimate Oddball has submitted a YouTube channel and "Thoughts On The Spectrum" Playlist, specifically the video "My Life So Far".

Youtube Channel: https://www.youtube.com/channel/UCVUqh7VMzHYuAp4G1Qb1Vog 'Thoughts On The Spectrum' Youtube Playlist: https://www.youtube.com/playlist?list=PLo87IJ5XFbKUNrqjdB0Z2VaRKN7b7aJDf Website: http://ultimateoddball.wix.com/home Video Transcripts: http://ultimateoddball.wix.com/home#!video-transcripts/uss92 Guide to Conversation: http://ultimateoddball.wix.com/home#!guide-to-making-conversation/fd2xh


Content Warning for Medical Issues and mental health.

Pride (and Shame)

Amanda Mills (@NaturentheCity on Twitter) presents Pride (and Shame), which is available on YouTube and on Nature Study in the City. From her blog:

Me- talkin bout love, and pride, and shame.

Autistic Vloggers and Autistics Speaking Day- LAFA

khawkgirl presents "Autistic Vloggers and Autistics Speaking Day- LAFA" on her YouTube channel Life As a Feral Autistic.

Autistics Speaking Day 2013!

Rayn posts "Autistics Speaking Day 2013!" on AcidRayn.com. Trigger Warnings for lyrics that describe oppression, violence. (If the music doesn't play properly here, it is available on the original post, so see link above)

In honor of Autistics Speaking Day, I would like to share with the public some of my music, lyrics, performances, and videos as a Hip-Hop artist on the Autistic Spectrum. My involvement in Hip-Hop music stands out as the single most important factor involved in helping me to build the confidence I required to start fighting back strong against my severe social phobia, and finally begin publicly expressing myself as an Individual – from music networks, to social networks, to the stage and live audiences, to my very own website!

Autistics Speaking Day 2013

Autismum posts Autistics Speaking Day 2013 on Autismum.com

The Pwd is a little man of very few words. Of those very few words, this one is my favourite:

My Video Blog for Autistics Speaking Day

My Video Blog for Autistics Speaking Day by Rainbow on Youtube.

Autismum Autistics Speaking Day 2012

Autismum has posted Autistics Speaking Day 2012 on Autismum

Well, the Pwd doesn’t have any words at the moment but he does have an awful lot of soul!

For much, much more go to the Autistics Speaking Day 2012 website.

My life with Aspergers

Ian's video for the event, although I should probably clarify that Autistics Speaking Day is not related to Autism Speaks.

Autisum Speaks Day 2011

Stephen Kelley's YouTube video for ASDay.

Something About Us

CurlyAutie (via jesbenstock) has a video in two parts, entitled "Something About Us" on YouTube (Part 1 and Part 2)