Why I'm Not Going Silent Today-Yes, That Too

Reprinted from Yes, That Too because it's relevant.

Trigger Warning: Silencing of disabled people, probably ableism.

Six Degrees has an event. I do believe they think they have good intentions, and I do believe they think they are trying to listen and help, which is different from believing they actually have those intentions and they are actually trying to do those things.
The event runs from 10am-12pm today, and the idea is to not speak for those two hours, "because some people with autism don't have a choice."
But there are real problems with the event.
I think it's pretty straightforward to state that this is a simulation of disability, which means that Autistic Hoya's critique is relevant. You can find it as black on white here, and white on black here. Disability simulations don't create "I get what it is like to have this disability" in my experience. (Yes, I had to do one for blindness in middle school, and I didn't learn much of anything from it.) If done properly and explained properly, you can simulate what it is like to deal with some of the ableism and inaccessibility issues, but you can't really simulate what it is like to actually be disabled.
For example, you could even explain a not using oral speech thing as getting a taste for how people treat those who do not speak, how people don't want to take the time to communicate with those who do so differently. And if that's what you went in looking to learn about, you could get something out of it. Not the full experience of dealing with it day in and day out for a lifetime, but a taste. It would work especially well if you were using an AAC device for that time, because then it would be clear that you weren't just being kind of quiet during that time. Everyone would know that you were using alternate communication, and they would make judgements based on that, and you would get a taste of that piece of our experience, which is the one that actually needs to be fixed.
Or you could explain it in much the same fashion as the days of silence that other groups have done- as a protest of silencing they face. A day of silence to protest ableist silencing (remembering that behavior is communication, all people communicate) would work well.
But that's not what this one is framed for.
This one suggests that two hours not speaking will explain why autistic people who do not speak have outbursts. (No, it won't. Because it's not just a lack of oral speech that causes outbursts. Communication frustrations are part of the issue, but lack of oral speech and inability to communicate and communication frustration are three different things. No, really. You can have a substitution aphasia that means you have oral speech but not be able to use it to communicate. Without some other form of communication, there won't be communication, which leads to frustration. With another form of communication (AAC is a wonderful thing!) there is the ability to communicate, but frustration can still come from people not being willing to take the time to work with an AAC user, and that's still communication frustration. Or you could be unable to use oral speech but capable of typing. That's a pretty common situation for autistic people, and over the internet, you can't really tell who is a typer and not a talker unless they tell you. And AAC users and talkers and part-time-of-each folks can all have communication frustrations from other people ignoring their communication, not just from problems sending the message.
The event is, I think, conflating lack of oral speech with lack of communication (ironic, considering that the event was promoted in a way that doesn't use oral speech and that most of the discussion of it hasn't used oral speech either.) It's conflating the issues that come from actual communication difficulties with the ones from people reacting badly to those who use AAC. I've spent two hours and longer non-speaking before- properly accommodated, it's not that big a deal. Really, it's not.
And of course, there is the question: Who is this event really about? I know they say it's for autism. Everyone doing anything related to autism says it's for autism. But autism isn't a who. It's a nebulous noun form for autistic, which is an adjective used to describe people whose brains and nervous systems are a certain way. Is the event about autistic people and helping them, is it about making would-be allies feel good about themselves, is it about education? What is the purpose? And does it accomplish that purpose.
I think that the organizers are consciously torn between trying to make it about educating and about helping autistic people, but that it has become about making would-be allies feel good, like they are doing something.
It doesn't succeed at educating as run and framed. It's not going to teach people what it is like to be autistic, and autistic people know it. Some have even commented on the event photo, explaining why. (We/they are the ones who are framing the issues with the event in terms of it not actually helping autistic people, not the ones saying things like that participation would get us fired. You can kind of tell who is who by looking at what issues we say there are.)
It doesn't actively provide help to autistic people either. I don't think anyone has come up with a direct material benefit to autistic people that this event could give, and I don't think anyone can. The only way it could help us was if it helped people understand what it was like to be autistic in ways that led them to accommodate us better, and that requires actual education. It's not going to happen as framed.
It does, however, succeed at making participants feel like they are doing something. You can recognize it by the way that they defend it- the people it is supposed to help show up and explain why it isn't going to work and what you can do instead, as Amy did:

You cannot understand in two hours or two days. And the fact that we don't speak is not the problem. The problem is that there is little understanding and willingness to listen to us. Everybody communicates. Spend two hours trying to understand a different way to communicate or listening to an AAC user.

When the answer to that  is something like this:

WOW !! Can't Even UNITE on Something So SIMPLE !! & This is WHY There will Never be PEACE About ANYTHING !! Its a SAD SAD World WE Live IN !! My Son Was NONVERBAL !! & I WILL DO THIS FOR EVERYONE OUT THERE WHO IS NONVERBAL !! BECAUSE IT IS THE RIGHT THING TO DO !! WE ARE TRY'N TO RAISE AWARNESS TO THE CAUSE !! 1IN 88 !! GET IT !!...

That's how you know that it's about feeling good about themselves, because they are claiming it is the right thing to do for people who are non-speaking and complaining about the inability to unite on it, when the people who are not being united, who are saying why it doesn't help and providing helpful comments on what would be good, are the exact same people that are supposed to be helped by it.  That's a form of silencing and it ties into privilege politics and of privileged groups making things about them when they aren't. It makes it extremely clear that the event isn't really about us, that our opinions aren't mattering here which is a common issue with things "about" disability.
One person did notice that both sides are talking from a me-I standpoint. That person missed a couple important things. One, Autistic people are taught from an early age to advocate about all their issues using I statements and to make it about their feelings because we are apparently impersonal, or something. So it's kind of their own teaching doing that on our end. Two, there is a group that this event is actually about. That group, which is autistic people, should be able to talk about it as me-I stuff, because it's about us. If it's not about us, that's part of the problem with it.
Now, for a comment that illustrates the problems we truly face, we autistic people who have communication issues. "... and would get me fired." Yes, that. Even when we can communicate with AAC and the job we want can be done just fine using AAC, the lack of speech thing can and does get us fired or keep us from being hired. That's the kind of thing that we need to be fixing. Discrimination against those of us who communicate differently.
It's a step up from Communication Shutdown, in that not speaking is a thing we deal with as opposed to staying off the sites we use to communicate in a move that doesn't even relate to how our disabilities work, but it's still not actually helping and it still has the ability to give people the idea that not speaking is the cause of the frustration and push people further away from accepting and including, making the problem yet worse. This kind of misguided attempt at helping and spreading awareness is why Autistics Speaking Day started and is needed. Listen to autistic people, that's how you learn about us and our lives.

Autistic People Should

Autistic People Should is TODAY

A flash blog event reacting to the negative auto-fill when one searches "Autistic people should" and "Autistic people are".    



Autistic People Should  is Today, February 23.  

Autistic People Are is March 2.



Come on, let's show them what really should be in the auto-fill. 

Autistics Speaking Day this year

J. Gray writes Autistics Speaking Day this year

This year for me is very different from Autistics Speaking Day last year.
On the last autistic speaking day I lived about 1,000 miles north from where I do now. I lived with my parents and a sister in a townhouse in a middle-class neighborhood. I had some autistic friends from a local autism group and I didn't have a lot of adult responsibilities to think about then. This year I live in a trailer community, I use the bus for most of my transportation, and live with one other person who is also autistic.

Things have changed over the year though. I attended autreat twice but since then I've missed two autreats and it's unlikely I'll attend any soon do to finance issues. I don't see most of my autistic friends in person anymore, but I have more than ever before online now. Last year I didn't expect much of any of my relationships, and this year I can say I've been happily living with my autistic fiance for over six months.

I've also come to realize though that sometimes being an autistic adult sometimes means it's very difficult or nearly impossible to get married. I live with an autistic man who receives disability. We have no certainty when or if we can ever get married and still afford to pay bills. Even though I get upset by thoughts about being unable to get married, how will I pay for college, or wondering what sort of job would be appropriate for my skills or ability these things are less upsetting than they used to be.

I'm less alone than I used to be on these problems. I've found both autistic and NT friends online with similar issues. I've expanded a lot on including the entire disability community in finding people with common interest as myself. Things are somewhat easier to handle when other people are around to add affirmation to my feelings. My neighbor is not autistic but has some mental health disabilities and the other day out of some unrelated topic just says "I don't think it's right that some people on disability should have restrictions on getting married (okay- these weren't her words, but that's what she meant)". I wish that things like SS restrictions, bullying and abuse in schools and workplaces, exclusion of autistic individuals , etc. didn't exist and I didn't have any message to tell. For now though things like other people's acknowledge and understanding seem like progress compared to the days I was and elementary school or middle school and had people calling me "psycho".

My History

Nickolas D writes My History on Self- Determine and Independent through Autism

 I am Nickolas Duncan, and I have Asperger's Autism. I was born in January during the early 1990's. I currently work at Earth Fare where I am a courtesy for four years, and I had so much fun working with the best co-workers, and meeting new people. Since then, they were cutting my hours due to economic times and I can't work more hours because of it, so that's why I've been job hunting for 15 months with no success. The interviews I had with other grocery stores wasn't accepted, and the job referral didn't work either. The workplaces I applied to, had no experience working with autistic people.

My story began when I turned two years old; at that time when my parents took me to the doctor, and he said I was diagnose with autism. I always have problems communicating with other people and friends while it was very difficult to learn how to read and combine numbers, but I also had anger issues. I always didn't know what proper behavior was until I got older; it was full of bad choices that took awhile to overcome. During that time, I attended three different elementary schools such as Hunter, Foust, and Pilot. Hunter Elementary was a little OK, but when it was nap time I wasn't used to sleeping at all; however I did learn a little bit along with my former classmates, then we had free time; the same thing with Foust Elementary.

When I attended Pilot Elementary School, this was my most challenging school to cooperate with my new classmates, and my childhood friends from my previous school. We mostly got along really well on certain days, however, there always was a difficult time with behaving very well. Next, when I got to the fifth grade I was finally able to learn on my own behavior and make outstanding grades. The fun thing about this school is participating in Special Olympics like Running and Bowling, where I won many ribbons in first, second, and third place where we compete against other autistic children. 

Continuing the story, I attended Allen Middle School my entire sixth grade year, it was full of bad memories where there was no respect in the classrooms I go to except my homeroom and one encore class. Even though I got many outstanding awards during this school year and making new friends, I was still treated so badly by my mean teachers ( not the best learning environment) despite my hard work. I was very glad to leave that school to transfer to Kernodle Middle School where I reunited with my childhood friend and had the best teachers and friends in the world. That's where I become the one of the most popular students in this school which is my most favorite place to go to because it was one of the honor schools of excellence. We also participated in Special Olympics where this time I won medals.

I'm not going much about high school ( I graduated with honors and as a member of National Honor Society), but more about college I attend called Guilford Technical Community College majoring in Computer Information Systems. I've been attending this school for four years where I enjoyed an incredible learning environment where I reunited with most of my childhood friends, and I even met new friends who continue to support me even if have sad moments in my life, so I want to thank them for always encouraging me to reach my goals. 

I also like to thank my parents who have been with me all my life supporting me and helping me accomplish things, I love them with all my heart, and including my family members, my cousins, and my grandma who is a special woman in my life (if she was still here, she would be proud of me) and I will always miss her.

We all need to help raise autism awareness, and let the entire community know that all of us including our allies are helping fight for our rights to have be treated equally as everyone else. 

Stories Seldom Seen

Squiditty writes Stories Seldom Seen

Trigger warning for ableism, ableist murder, discussion of victims lives

I’ve written here once before about the memorial cairn I tend in my backyard, about the small (and yet too large) huddle of stones that mark the lives and deaths of fellow disabled people who have been murdered.   I’m writing once again because it’s the beginning of November, when I hold my yearly vigil, and because it’s the time of Autistics Speaking Day. 

Not all of the stones I had to add this year were for autistic people, though many of them were.  There’s a lot of overlap in the issues faced by the autistic community and those facing the disabled community as a whole, and that’s tended to be particularly true here.  For the past five years I’ve marked the night quietly and alone- but tonight, I’m here to speak  their names for anyone who will listen.

Read More Here

Late ASDay post ( or untitled)

Lady Ashmire writes Late ASDay post ( or untitled)



I've wanted for awhile to participate in Autistics Speaking Day, but have not been able to since it falls around holiday time, which tends to mean that executive function and language access difficulties are through the roof for me( not helpful that my keyboard is currently messed up pretty badly). As it is, this post will be late, comprised at least partly of disjointed jottings from other occasions, and made possible only by indulgence in a venti latte, which I do rarely for fear of building up a tolerance to caffeine and losing access to its extremely helpful benefits.


Fragment I:

Discussions overheard lately, being near Halloween, have now got me questioning to what extent my experience of fear is similar to that of NTs, and from there also wondering whether it's really me that has the problem understanding the nature of emotions after all. First of all, many NTs claim to enjoy experiencing fear. This makes no sense to me. I think this may, however, be partly due to the fact that, as far as I can tell, they experience when visiting a spook alley or watching a horror film something like my normal baseline levels( BTW, I don't find most of that stuff scary anyway, just physically repulsive---this applies to "If I did get scared, however"). They also seem to think handholding and cuddles are both comforting and a benefit to this type of experience. At the point when I would consider myself to be frightened worth mentioning, I'm in full-on fight-or-flight mode, and any zookeeper will tell you, a primate( humans included!) in such a state isn't something good or that you want to try holding hands with! Fear, from an autistic perspective, isn't something you F___ around with for entertainment, but a true force of nature in itself. We always assume that Dr. Banner's transformation to Hulk( which BTW, I see as a pretty good fictionalized representation of an Aspie having a meltdown) is fueled by anger, yet anger without fear to drive it invariably fizzles rapidly. In fact, I do not see how it is possible to experience the two independently. In spite of this, I've frequently had NTs claim I'm lying about my reactions because they "See anger, not fear" in my expression. There is no anger without fear, no fear without anger! Fight-or-flight is ONE thing, not two! Even love, that supposed conqueror of all, is basically only an extension of fear, the expansion or dislocation of one's survival instincts onto to another individual. 

Fragment II( taken from a comment I made on another blog a year or two ago---the first sentence may sound a little odd without the context but I'm no longer able to find that): 

My opinion is that echolalia really refers to two different if related phenomena. I DO have times when I get a word stuck in a mechanical loop without meaning( sometimes repeating a single word in the middle of a sentence several times, which sounds odd). I do this mainly when fatigued or in pain. But the other kind( used on purpose to communicate) described happens, too, and I think also gets confused with the phenomenon of scripting. 

Scripting is *definitely* intentional communication( well, some of it might be fun play from some children), at least from me and I suspect from many others. There is an old Star Trek: TNG episode where they meet a race that cannot be understood even with their Universal Translator, because these particular aliens speak almost entirely in literary allusions---to literature that humans have never had the opportunity to read. This is almost exactly what I did as a child and even into my early 20s, though because by the time I was in my teens I was using Poe, Shelley, and Shakespeare I just got the reputation of being a dramatic goth kid instead of the real truth, that I couldn't find my own words quickly enough (if ever) so I just used the approximately synonymous phrases of others. (I seem to recall a very early Gary Numan interview where he seems to describe this as actually a part of his creative process, but no NT I've heard that read this was able to understand what he was talking about).

Where it bogs down is if one person gets a totally different message from the text, also I believe some small/more classically autistic kids may associate unrelated emotions to the words due to outside happenings at the time of listening to them, e.g. they quote a movie that they were watching when they last felt the particular emotion they are trying to describe, but that bit of dialogue has no relation to what was happening to them at the time.


Fragment III( from a forum post I made):

I would never have met any of my real-world friends and would have been completely isolated as a teen without online socialization. Being around people physically does not lead to meaningful interaction for me. It's not shyness( though sometimes I can feel shyness if I particularly admire someone or need their approval for external reasons), as I don't really fear rejection or think about it much. I just...can't process in that way. For many years I thought I got hangovers from alcohol or from tobacco allergy or was staying up too late. By process of elimination, however, (i.e., it happens even if I don't drink, no one is smoking and I still get normal sleep time, but does not happen if I drink alcohol by myself or stay up till the wee hours absorbed in a special interest) I discovered that, actually, being forced to socialize in person, especially in a group or without other purpose than socialization itself, directly causes physical pain and exhaustion( symptoms almost identical to what is described for alcoholic hangover) and lowered functioning/increased autistic issues( such as mutism and intensified sensory issues) for the next 1-3 days. Sometimes I do want to see my friends or at least support something they are doing, but it requires a LOT of planning and acceptance of downtime.


Fragment IV: 
I don't think I could ever describe to any NT the soothing rush of sensory happyOMGYAY!! I felt at the sight of this display in the store today:

Edited to add: No idea why the link does not work, but the pic is here:http://www.freeimagehosting.net/sad2l 
I know nothing about this line of toys, but I wish it had been around when I was a kid because I would have gone nuts collecting these! Blue and gray and SOFT! My newborn pics have me in blue instead of the expected pink, not because my parents wanted to buck tradition, but because it was immediately obvious from birth even without ever having heard of sensory aversions that I would cry and freak out self-destructively if wrapped in a pink blanket, yet was as calmed and fascinated by blue things as I was distraught by pink. I did get somewhat desensitized over the years (won't get far in life if you can't stand the sight of your own skin), but still often have to leave an area of a store with Valentine or Breast Cancer displays due to overload---it feels almost like the achiness of oncoming fever, and still feel so, so blissful with pronounced amounts of cool blue tones around me!

Upon Tomorrow

Kai writes Upon Tomorrow on The Next Ten Words

I am a triad of impairments.

My early years were happy ones as there was so much joy to be found and experienced in the quiet of life. Moments were captured and as the film developed, I learnt to interpret the world through my senses. I could happily spend hours absorbing the frames of life, searching out patterns and being sure to feel every detail. Ever longing for information, I would seek out more and more until I exceeded an ever changing threshold and would end up sobbing and exhausted in my mother’s arms.

What a marvelous life. How lucky are we who get to experience this?

But I was not considered to be the lucky one. I didn’t understand that others were not sharing the same experience as me. It seemed silly to say out loud the things which I found so obvious. Why look someone in the eye when there were many more things to look at which resulted in me feeling considerably less ill?

I did not think to join in the games of others. As I grew older, I have vague memories of being herded towards different groups of children and told to “play” with them, that they were my “friends.” If only the memories of the merciless teasing or being drawn into talking about my interests only to be mocked about them later were the vague ones.

It’s lucky that I was smart. I soon learnt that I could make alienation happen on my terms. Life becomes much more calmer when you can control the hate that is directed at you.

High school revealed that I was more than just introverted. I had a brain that would latch on to an interest and treasure it to an extent that I still do not have the words to describe. In fact sometimes there are no words to describe a concept and only a flap of the hands will suffice. The rule based dance that sent words back and forth between people alluded me. I found the conversation of others to be a thing of wonder.

I now realised that I was not as they.

Later I would read that there were words for people who demonstrated traits such as mine.

I displayed a qualitative impairment in social interaction.

I displayed a qualitative impairment in communication.

I displayed restricted, repetitive and stereotyped patterns of behaviour, interests and activities.

I was Autistic. I am Autistic.

This is okay.

It is true that I often have to try significantly harder to complete tasks or engage in activities that others can do subconsciously.  There are some opportunities that will not be open to me.  This does not mean that I am less likely to be happy than those who fall within the norm.

Knowing that there were people on my side helped greatly. Understanding and accepting family, friends and professionals can make a world of difference to those on the spectrum who at times can feel so alone. I now strive to be that someone.

The word that encompasses the triad of impairments fits me well.

I am not ashamed to be Autistic.

I am not ashamed to be me.