Jane Strauss writes Autistics Speaking Day on Facebook

Trigger warning for mentions of abuse

Today is Autistics Speaking Day. 

It was instituted in response to an "interesting" assertion that somehow, by going offline for a day non-Autistics would suddenly have a clue of what it is like to be Autistic.  This is a particularly egregious sillyness, given the huge Autistic community that has grown up online based in part on how many non-speaking Autistics, given a keyboard, not only communicate but are darn eloquent about it.

And do we need it?  You bet.

The Big (and Ableist) Difference between Self-Diagnosed and "Professionally" Diagnosed Autistics

Paula C. Durbin-Westby writes The Big (and Ableist) Difference between Self-Diagnosed and "Professionally" Diagnosed Autistics on her blog.

I am tempted to leave the entire post blank.

But perhaps a bit of explanation is in order.

Someone in a conversation suggested that at conferences, Autistics with "professional" diagnoses should "lead conversations," leaving the self-dx'd Autistics as a sort of second tier. Some of the participants in the conversation (including some Autistics) argued that self-diagnosed Autistics are "more extreme." Here's my take, short in the interests of time, which I don't have.

I don't agree with having professionally diagnosed people take precedence. When it comes to opinions about autism, I don't see ANY DIFFERENCE AT ALL, seriously! between the opinions of self-dx'd people and professionally dx'd people. What, the professionally dx'd ones are "less extreme?" I'd need to see a "professional" study on that! That's a stereotype, and a very disturbing one,

In fact, if you are Autistic, you are Autistic, whether or not you have a dx. Many people go through life being Autistic and don't know a thing about autism discussions or autism advocacy, either because they are not in a position to know aobut it or due to low interest, or perseverations (if I may be so bold to use that term) that tend away from autism advocacy.

Now, I think the people in the discussion were thinking about possible solutions to the problem of having NO Autistics represented, on WAY too many panels about autism, at WAY too many conferences. This needs to stop. But to label self-diagnosed Autistics (which is often the only diagnosis that Autistics will get-- self-diagnosed and maybe PEER-CONFIRMED, due to financial and other limitations, and due to the shortage of QUALIFIED diagnosticians [just got yet another email from someone asking me for resources about diagnosing ADULTS]) as "less than" or "not to be given as much weight as "professionally diagnosed Autistics" is troubling for many reasons.

The most important thing I am thinking about is not this particular conversation, which is rather interesting. It is the implications for feeling justified in ignoring the very legitimate views of Autistics who can't afford (in many senses of the term) to get an official dx. Remember, pre-existing conditions has not been decided once and for all, and neither has employment discrimination and a whole host of other discriminatory actions that can be taken against people who have an "official" autism diagnosis.

1. Hierarchy of "more Autistic than you" WITHIN the Autistic Community.
2. Dismissal of Autistic viewpoints of self-dx'd Autistics, MANY of whom have been instrumental in creating the Autistic community (some subsequently receiving diagnoses later)
3. Allegations of "misdiagnosis" or demands (strong requests, then) to show proof of diagnosis, by some Autistics and certainly by non-autistic advocacy groups.
4. some other stuff. I will have to come back to this.
5. Oh yeah, important point! People who might be considered to have "extreme" views (NO CURE comes to mind) could be disproportionately requested to "show their diagnostic credentials" before being "allowed" to speak/communicate/talk/write for events.

The sequestering of self-diagnosed Autistics from EQUAL and MEANINGFUL participation in conferences and other events is ABLEIST. Scary ableist.

P.S. In the interests of transparency, yes I do have a diagnosis. No, I am not going to scan it in and post it. Are you going to scan in your diabetes test results or your blood pressure or your lateral epicondylitis? Me either.

To You, Young Autistic Friend

To You, Young Autistic Friend by Amy Sequenzia

Trigger Warning for the possibility of ableist comments

Autistic advocate and poet Amy Sequenzia's message of acceptance and respect for young autistics for 2012 Autistics Speaking Day. "There is nothing wrong with being who you are. You are perfect in your uniqueness."

Unmutably yours

Cindy Funkhouser writes Unmutably yours on Autistic Renaissance

My feminist theories of literature class this year propelled my discovery of Muted Group Theory, which is discussed here on Wikipedia. The idea is that dominant groups identify and mute nondominant groups to maintain power over them. What really interests me is how it’s taboo even to discuss our membership in a marginalized group, especially as disabled people, and how people will attempt to mute us when we do speak.

People appear to mute nondominant groups almost instinctively. For instance, when I say I’m Autistic, people who don’t know me will insist that I am not Autistic because I speak. When I try to clarify my identity as a disabled person, I find I am breaking a taboo.

This is only a small part of her piece; Read More Here

Autistics Speaking Day: The Joy of Stripes!

Original post here
As much as I have written lately about NOT speaking, I will be posting some visual images that I love. I could try to write more, and maybe I will, but let's have something that is non-wordy for a change.

STRIPES!!!!!!!!! Just posting these makes me very very very very very happy!!!!!!!!!!

I once indexed The Devil's Cloth: A History of Stripes and Striped Fabric, by Michael Pastoreau. Whilst indexing this (indexing being lining up all the information... plus a LOT MORE and no, a computer can NOT do it!), I was very happy, and went around saying "Stripes!" at odd moments, which made my mother laugh, because she thought I was being very entertaining. A search on the title yields two different (striped!) covers:

http://cup.columbia.edu/book/978-0-231-12366-2/the-devils-cloth

http://www.amazon.com/Devils-Cloth-History-Stripes/dp/0743453263

From a description of that book: "The medieval eye found any surface in which a background could not be distinguished from a foreground disturbing. Thus, striped clothing was relegated to those on the margins or outside the social order," a place which, not unsurprisingly, Autistics often find ourselves, not necessarily by choice.

STRIPE SERIES I: Striped Clothing with Joyful Happiness!

STRIPE SERIES II: Striped Plates, with Stripey Water, Very Cheery!

STRIPE SERIES III: Numerals That Are Sort of Stripey When Lined Up- 1, 4, 7

This is my room number at my very first Autreat, in 2007!!!!

These odometer readings are from one of my Volvos. I admit to tweaking some of the mileage counter numbers so that they would match the odometer reading, for more number-pattern fun! I got very good at figuring out when to reset the mileage counter so that it would match the odometer, and if I was off by a few numbers, it was really annoying to me. Of course, I had to pull over to do all this; it would be worse than texting while driving. I can even remember exactly where I was for some of these, like the church parking lot (first one), at Carter Mountain (some of the later ones), on Rio Road (one of the middle ones). No, I am not making this up. But I can't remember where I put my car keys most of the time...

And the awesome Alexander the Green Salamander, 1999 Dodge Grand Caravan, currently with over 325000 miles. Here featured with some 1s and 4s.

STRIPE SERIES IIII! :) Stripes n' Pipes

I am fairly sure that I did not become an organist because the pipes, keys, pedals, stop tabs, and rows of keyboards make stripes.

And finally, STRIPE SERIES IIIII! A Lovely Striped Card from My Child

A card my child made for me a year or so ago, with things that he thought I would love, so hearts, and XOXOXOXO and lots of 111111s lined up!

Autistics Speaking EVERY Day

This post can also be found at Yes, That Too's personal blog here.

Today is Autistics Speaking Day. (Unless I messed up my queue or I messed up which day it is or blogger is broken. But I'm assuming that none of this happened.) Today is a day when we all (or as many of us as can executive function in time to write/submit something by today, which is why I am actually writing this all the way back on September 21st) write something about our lives, our experiences, whatever as far as I can tell.
And what I have to say is that we speak EVERY day. Not all of us do it by talking, and even those of us who do aren't always consistent about it. Not all of us do it by typing either, though that is how I am speaking today
Having a day when we all get together and speak is great as a community thing. It's great for flooding people with reminders that we speak all at once. It's great for reminding us that we can speak out.
And I want to use that one BIG day to make sure we all remember something important: We all speak every day. When I stim in public, I say that I am not embarrassed of how my brain is wired. When I get done what I want to get done, I say that I am NOT inherently broken. When I smile, I say that I am not purely tragic, that I can be happy. When I decide that I do want kids of my own, I say that no, being autistic is not a horrible thing that I wouldn't risk passing on. It's something I feel perfectly OK with. I say that I am OK with bringing more autistic people into the world. When I melt down, I am saying that something is wrong. Whenever I do anything at all, even just sit there and not really do much, I am saying something about who I am and what I think. We all get to say things like that.
And sure, educating people isn't our job. I know that. I probably do more educating than I really need to because I like to teach, but I am aware that specifically educating is not my job unless I'm getting paid for it (only in math. sigh.) So rather than spending lots of time explaining everything over and over again, I ask: Do I act like I find my life and the lives of those like me tragic? Does Henry act like his life is inherently tragic? How about Kassiane? How about Ari? How about Amy? How about... and I continue. We don't act like we think ourselves tragedies because we don't think ourselves tragedies. We act like we matter because we do, whatever some other people might think. When we act, we speak. Today, what we say is that we do speak. Today we remind the world that we are people with our own ideas and our own opinions, and that we can and do communicate them. All they need to do is listen.

Flapping To Kalamazoo (a poem for Autistics Speaking Day)

Flapping To Kalamazoo (a poem for Autistics Speaking Day) by Rebecca Loggenberg on Autistic-Me

Flapping (also known as: Stereotypy, Stimming and Ticcing): These are repetitive movements such as rocking, hand flapping, head rolling, noise making etc. These are common for people with an ASD, and work by ‘stimulating’ one or more senses. Stims can be the things that I mentioned above, or other more subtle things. Rubbing your foot along a carpet, blinking very fast, rubbing the legs of your trousers when sat down, humming a noise over and over again. They keep you calm, together, help block out the world and help you feel safe. And guess what, you do them too. Biting your nails, chewing your hair, fiddling with glasses or earrings or tongue-studs, flipping a fringe, tapping your fingers. Same thing. They are also a form of communication, bigger than subtle facial expressions. Look to my hands and I’ll ‘tell’ you what I’m thinking and feeling.

*

So here is my poem, spread the word, I mean You! 

And help turn our world into Kalamazoo.

———————————————————————————————————

Flapping to Kalamazoo

A boy flapped his way down to Kalamazoo,

I watched with delight, and so I flapped too.

He flapped at the birds and the puddles and toads,

And he flapped at the cars and the shadows and roads.

‘Cus he flaps when he’s happy and flaps when he’s sad,

Flaps when it’s good and flaps when it’s bad.

*

But as he was walking, a noise he did hear,

A cough, so he turned- saw a man with a sneer.

The man dressed in blue, so the boy had a flap,

The man grabbed his shoulder, so the boy flapped- bad.

“Excuse me young man, but I just have to say,

That you should not show what you’re feeling that way.

You smile with your mouth, or you scowl with your eyes,

Not flap with your hands like you’re covered in flies!”

The man then let go, and the boy moved away,

(Which is good, as no-one should grab you that way)

He flapped with his hands and he ran and he ran,

And tried to forget about the flappy-flap man.

*

He flapped over fields, with the flowers in bloom,

He flapped through the night and he flapped at the moon,

While he flapped with his tiredness, flap he saw light,

Struck out for the village, with all of his might.

He knocked at a door, where he hoped he could sleep,

And a lady came out, but she stopped with a “Meep!”

“Don’t hurt me!”, she squealed, and his flap was now flap,

It didn’t look like he’d be getting that nap.

He flapped to say “Please say, ‘Come inside my dear.’”

The door slammed shut BANG, she did not seem to hear.

*

He was so very tired, so he knocked more and more,

But the lady did not come and answer the door,

So all through the village he knocked and would roam,

Flap, flap, flap, flap, flap, he just wanted a home.

He sat on the pavement, lent against a sign,

Took a card from his bag and he started to pine.

The postcard of colourful Kalamazoo,

“The Place For People Who’re Exactly Like You!”

He gave one last flap and he put down his head,

And he dreamt of a sandwich, a home and a bed.

*

He woke to hear whispers and flapped at their frowns,

“What’s wrong with it?”, “Why has it come to our town?!”

“Why is it doing that?”, “We don’t want that here!”

And the boy looked around as he flap-flapped with fear.

The colourful buildings, the trees neat and slim,

And all of the people who were nothing like him,

No, no, flap flap, it just couldn’t be true-

This shouldn’t be, couldn’t be, Kalamazoo!

*

He got to his feet, and again ran and ran,

At worst he’d just get back to where he began.

Then CRASH went his body, and flap went his hands,

And found himself on his back sprawled in the sand.

“S-sorry young man.” Said a voice, through a bruise,

The girl flapped her hands, and she stared at her shoes.

He flapped at her flapping, the first for a while,

She looked at his flapping and flapped back a smile.

“I’ve lived here for years, and I though they were wrong,

There was no-one like me, and it lied all along,

But I am like me, and you are like you,

We’re both like each other, thank Kalamazoo!”

*

So they shared a pink house and the town’s people stared, 

But together they found that they just didn’t care,

As they taught and explained why they were like they were,

The town became open, more friendly for sure,

They knew then that no-one was ever alone,

And with people like you, you would always find home,

It takes people who don’t flap and people who do,

To make somewhere special like Kalamazoo.

*

-Rebecca Loggenberg

Communication and Me!

Communication and Me! by Autiemom at Tales from an Autism Family


I have a significant amount of trouble with communication.  It is an area that is very hard for me. It’s not that I don’t want to communicate:  I can’t.  

My communication challenges are made worse by sensory overload and anxiety.  When these come into play, communication problems make the anxiety worse.  It goes around in a circle!

People with Asperger’s have a triad of social impairments: social communication, social interaction, and social imagination. Some people with Asperger’s compare trying to understand a conversation to trying to understand a different language. Many of us have trouble understanding gestures, facial expressions, and tone of voice.  Some are very literal and have trouble knowing how to initiate, maintain, and end a conversation.  There is also the problem of what to talk about.  Nobody only wants to hear about your special interest time after time!

I can’t properly gauge what emotion people are showing on their face or through the tone of their voice and I can’t always tell if people are joking.

People with Asperger’s can be highly verbal, intelligent, and capable, but our words get stuck. This can happen in any environment-home, school, and work.

Home

At home, it is difficult for me to initiate and have novel conversations with my husband and daughter.  At least with all three of us on the autism spectrum we have similar problems, although expressed differently.  I avoid answering the phone unless it is someone I know and I feel able to talk at that time.  Sometimes I have to force myself to answer phone calls from professionals.  I also struggle with making calls and many times put them off until the last minute.  In both cases, I don’t know what to say and even if I do know what to say or I have a script, it comes out jumbled up and there can be misunderstandings.

Even with my husband and daughter, things come out wrong or I don’t know what to say.  It is easier with my daughter because we both like horses and she likes to talk a lot about them.  Since I like them too, I can keep up!

                    

Professionals

I have a psychiatrist who actually talks with you and doesn’t just ask how you are and send you on your way with your prescription.  I appreciate that, but still, I don’t know what to say or how to say what I do want to communicate.  I have many things to talk to him about but I just can’t seem put it into words.  

With the family doctor, the main problem is calling to make the appointment in the first place. Sometimes, there are things that are hard to explain and I can’t get the point across and so my problem gets glossed over like it isn’t a real problem. 

I have the same issue with the dental hygienist.  My daughter needed an x-ray and told the hygienist that the film hurt her mouth.  She has problems with the tooth x-rays because the film makes her gag.  The dentist usually comes in to do it because he knows exactly what to tell her. The hygienist kept trying and told Micah that it didn’t hurt, which I didn’t agree with.  I told the hygienist that it hurt me and Micah has sensory problems and it does hurt her also.  I didn’t have the verbal ability to ‘get into it’ with her and the x-ray didn’t happen.  I told my husband about it and our torturous cleanings (our usual hygienist didn’t do our cleanings) so he emailed the dentist who said he would go back to cleaning our teeth himself.

Educators/Teachers

Teachers have an abundance of power (at least they think they do) over people with disabilities. It is important that parents know the laws and requirements of special education.  As a parent, I know what they are required to do.  However, because of my communication difficulties, I cannot make my knowledge known to those in charge of teaching/helping my daughter, and so they think they can push us around.  This has happened in previous schools. I may not be able to get my point across to them or defend myself verbally but I always find a way:  I can do it through email or through my autism consultant who, after talking to me, knows what I want to say.  This way, she can talk to the teachers, principals, and Special Education Resource Teachers (SERT) on my behalf.  She helps them understand what I want for my daughter so that school goes better for her than it did for my husband and me.

Relatives

I struggle with initiating conversations even with my extended family and in-laws.  I have four siblings.  I grew up with my slightly younger sister and although we lived in the same house until she left home when I was about 18, I still have trouble initiating and maintaining a conversation with her!  At family gatherings on either side of the family, I usually just sit back and observe or attend to Micah if needed.  I can answer a question but I don’t go into detail unless it is something I know a lot about and the words don’t get stuck.  My side of the family, when all the aunts, uncles, and cousins are together, likes to loudly ‘debate’, especially at the dinner table.  I just sit even if I have an opinion because if I put my opinion out there, I won’t be able to defend it.

My communication difficulties are made worse by the sensory overload from the loud noises, smells, and being in new situations.

If people take the time to really get to know me and they understand Asperger’s, they should be able to get a sense of how I would like to respond.  When I am comfortable with someone, I am able to tell them if what they think I want to say is right or wrong.  I can’t always just tell them what I want though.

I had an autism consultant who helped me for several years.  She was not on the autism spectrum and did not have a child on the spectrum but she was good at knowing what was going through my mind and she was able to put it into words for me. 

In the winter, her job changed and I was given a new consultant.  I was scared because there was no transition time so the new consultant and I could get to know each other with my old consultant present.  I was hopeful though because the new person has a child on the spectrum so she might be able to ‘get’ me.

It turns out she does get me and is starting to really know the way I think.

I don’t know if I will ever be able to communicate any better than I do now.  It can be very frustrating but I still wouldn’t take a cure for autism if there ever is one!

University Radio York Reading

Hey all!!  We've gotten an email from Tess Humphrey at the University of York.  Tess is the Documentaries and Features Editor at University Radio York and would really like to make a small feature on the radio about autism awareness and Autistics Speaking Day!!

If any one would like to have their some of their work read on air, you can contact Tess at tmh503 @ york.ac.uk

Participation Buttons!

As requested, I've made some participation buttons.   I've also included a textless version of the logo, in case anyone wanted to design their own.  Please, feel free to design your own if you don't want to use these.


So for not getting them out here sooner!

Autistic Speaking Day Tumblr

Alright, so we have an ASDay Tumblr set up!!!  If you're on Tumblr, go check it out and would like to submit through their, go check it out!



Also, we're getting requests for participation buttons to put on people's blogs.  Um, working on that.  But feel free to make your own if you have ideas.  We're not going to restrict anyone's creativity in this.  It's your event, it's your day, we're just here to try and keep some resemblance of order.