Hope Says 'Yes'

R. Larkin Taylor-Parker writes "Hope Says 'Yes'" on Traveling Show tumblr

Even with open memo breathing down my neck, Autistics Speaking Day is too important to be all reruns.  Forever ago, when it was warm out and I had time on my hands, I wrote about how I saw us facing a decision: we could be a flashover subculture, mostly small bands of Internet rebels, or we could be something lasting, ultimately a people.  The signs as I read them say that enough of us are making the moment-by-moment commitment to each other that I hoped we would.   

One of our own who needs help has gotten a lot of support.  I said we needed more room for dissent and different styles and watched the new follower emails arrived.  we laugh at some of the same things.  The agenda is more than ‘no.’  There are still things to say no to, like eugenic ideas as resilient as fictional monsters and whatever those presidential aides thought they were doing.  Community, society, and culture, though, are more than resistance to whatever is imposed, oppressive, unwanted, or wrong.  The latter is a necessary condition for the former in the long run.  Increasingly, I see people saying ‘yes’ to student groups, writing and disseminating good ideas, writing their elected officials, or chipping in a few dollars toward something worthwhile.  The dream that absorbed so much of so many of our lives was worth it.

I said that a culture is a story.  We won ours somewhere along the way.  Make it a good one.  Between now and this time next year, say ‘no’ when other autistics need you if you can.  Also see if you can say ‘yes’ to something that makes it better, richer, more welcoming than before.  What you do can be as small as including someone or as big as starting a business or nonprofit.  Whatever your gifts, abilities, and circumstances, your contribution is very important.  You can help this thrive and grow.

Communication and Me Updated Version for Autistics Speaking Day 2014

Mandy Klein writes "Communication and Me Updated Version for Autistics Speaking Day 2014" on Tales From An Autistic Family

Today is Autistics Speaking Day.  It was started a few years ago to counter the Communication Shutdown day where people were asked to give up Facebook and Twitter for the day to see what it is like to be an autistic struggling to communicate. 

Those are actually some of the easier ways for us to communicate.  It involves typing and not face to face interaction.  I also don’t think they thought about the fact that communication is more than just typing and/or talking, many behaviours are communication.  Not using Facebook or Twitter are not going to let you know our struggles with communication.

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

Some autistic people compare trying to understand a conversation with trying to understand a different language. 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.  Some of us have trouble understanding gestures, facial expressions, and tone of voice.  Some of us 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. 

Autistic people can be highly verbal but our words may 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!  Of course now she is into Marvel superheroes and is sending me a fact a day because I am not up on all of it.

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 to him.  I have many things to talk to him about but I just can’t seem put it into words.  I should probably get up the courage to start writing things down and passing him the note but I haven’t yet.  Not that I should even have to worry about things like that but that is the way the world is still.

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.   In this case, I’m not sure that writing it down for the doctor would work.

I have the same issue with the dental hygienist not listening.  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 autism, they may 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.  My current autism consultant can do that too.  They always consulted me and ensured it was correct

I don’t know if I will ever be able to communicate any better than I do now.  It can be very frustrating but that is the way I am.  Since all behaviour is communication, I need a translator!  The only problem with that is I hide many of my stims and SIBS.  I also can’t always get what is in my mind.  out in any form.  If I can't get it out right away, there is a chance it will come out another time.

Just because we don't communicate in typical ways, does not mean we don't communicate.  Don't take our ways of communicating away from us.

Is There a Difference Between Autism and Asperger's Syndrome?

Iris Gray writes "Is There a Difference Between Autism and Asperger's Syndrome?" on The Purple Aspie

Often when I tell a person that I am autistic, they immediately ask if I have Asperger’s. Sometimes people tell me that I am not really autistic; I merely have Asperger’s.

One of the most common questions on the various autism or Asperger groups I belong to on Facebook is: “What’s the difference between autism and Asperger’s Syndrome? Is there a difference?” I would say that on paper, there is a difference; in reality, not so much.

On paper, before the changes in the latest edition of the DSM, the difference between autism and Asperger’s was speech. People who had delayed speech in childhood were usually diagnosed autistic; those who had normal or early speech were usually diagnosed Asperger. I say “usually” because this is not always the case. I know one person who had early speech in childhood who was diagnosed with autism. She is very defensive about this because most people assume she has Asperger’s (I imagine these are the people who see autism as requiring some sort of intellectual disability) and may even argue with her about it. I also know one woman who was convinced she had Asperger’s and who was given a diagnosis of autism.

This is one of the reasons I say that in reality, there is no difference between autism and Asperger’s. When I was first diagnosed with Asperger’s, I sought out online support groups because, at the time, I didn’t know any other Aspies in real life. I found most groups had a mixture of those diagnosed autistic and those diagnosed Asperger’s, and while there were, of course, differences among people (because no two people are exactly alike), there were no significant differences between those with one diagnosis and those with the other diagnosis. I also found I had just as much in common with those diagnosed autistic as I did with my fellow Aspergians.

Many people were concerned about losing their diagnosis of Asperger’s when the DSM folded it into autism spectrum disorder. I personally prefer not having a distinction between the two, because Asperger’s has always been considered to be a condition on the autism spectrum. Some people do not consider Asperger’s to be the same as autism and have even argued for it to be a distinct diagnosis, but seeing all that I have in common with people with the autism diagnosis, and knowing that my friend who showed what are normally considered symptoms of Asperger’s was diagnosed with autism, is enough to convince me that Asperger’s and autism are really not different at all.

Speaking Truth to Power

Morénike Onaiwu writes "Speaking Truth to Power" on Just Being Me: Who Needs "Normalcy" Anyway?

This is my very first Autistic Speaking Day! And true to form, I'm writing this  in the evening, the day of (it's all about that time agnosia).  I have no idea if it will be able to be included, but I'll try anyway.) ;)

Several months ago, a non-Autistic mom of Autistic kids (whom I deeply admire) expressed that in some ways, she felt "stuck in the muck" between autism "warrior" curebie moms and Autistic adult advocates...not really belonging in either place.  I didn't speak up at the time, but even though I have known for over a year that I myself am Autistic, I could still understand what she was saying.

Like her, I cannot, and have never been able to, relate to the parents who feel that autism has "stolen" their child and compare the day they received the diagnosis of autism to the 9/11 terrorist attacks.

But then, on the other side, there are some ways that I don't relate to my Autistic brothers and sisters either. I'm not referring to the individual variation you'll find in ALL people. And I'm not referring to racial, religious, gender, or other differences either. I'm talking about something else.

Many Autistics have gained a level of knowledge through their lives experiences, many of which have been painful ones. I am a "newbie" of sorts to neurodiversity and to Autistic activism, but despite that, I am right there with them.

Autistic adults are amazing. I am completely in awe of my community every day. They are NOT without flaws and certainly our community, like any other, has many areas where we could, and MUST improve.  However, even with all of our "warts" the core purpose of Autistic activism and advocacy still has tremendous merit - and it is largely altruistic as well.

Despite being regularly unappreciated, misrepresented, ignored, belittled, and misunderstood, most Autistic adults are primarily engaged in activism because they are motivated by a desire to prevent others from going through the rejection, discrimination, and hurt that they've been through not just from society as a whole, but sadly, often from within their very own families--families that didn't understand them and often didn't accept them.

And that's the major difference between myself and many other Autistics, I think. I've been through a lot of painful things as well in my lifetime. I feel their pain, and their passion. But only to a certain point.

Because all my pain and rejection came from the outside. I fortunately never had to endure any of that from my family. They knew I was different from others, though they weren't exactly sure what it was called or why. They didn't care.  They loved me. Supported me. Accepted me.

I believe sincerely that a lot of the reason that I lived and navigated my life successfully for over three decades as an undiagnosed Autistic female of color is because even though the "real world" was ableist (and sexist, racist, classist, and a whole lot of other "ists" too, but that's another convo), and was brutal, intolerant, cruel, and hateful, every time I walked into the door of my home I walked into a haven.

My family is NOT perfect. OMG they are SO not. We're all a little "off" in our own way. But all my life from the day I was born to the present I knew, and I know, that I am 100% loved and accepted exactly for whom I am.   That was a powerful, and much needed truth. Sometimes it was all I had to keep me going when everything in the world was falling apart around me. I could rely unequivocally, unfailingly, unquestionably, unconditionally on the love, acceptance, and support of my family. Not in spite of being Autistic/different. Including it.

And this Autistics Speaking Day, and every Autistics Speaking Day afterward, that is my hope, my prayer, my wish for ALL of my people on the spectrum. That even when the whole world is spewing out nothing but hate, they can rest in the knowledge that their family (and for some, "family" will refer to their family of CHOICE, not their relatives) is giving them nothing but pure unadulterated love.

Happy Autistics Speaking Day 2014 to all of us.  Much love from me and mine.

Spoken Word From Shaping Clay (#CRCon #Neuroqueer followup)

Michael Scott Monje Jr. submits "Spoken Word From Shaping Clay (#CRCon #Neuroqueer followup)" from Shaping Clay



Sooooo.... today is Autistics Speaking Day. It's an important day for autistic people, a day created by activists in our community for the purpose of raising our voices and making sure that every conversation about us is with us. And I am just too tired to come up with an essay. That's hard for me to know, because this has been an important day for me for a couple of years now. I mean, I essentially started a new and transformative period in my life with last year's posts.

The fact is, though, that I just don't have it in me. I'm pooped. I mean, I didn't even get Imaginary Friends up this week. It's not that I'm being lazy either--it's just that yesterday, I drove up to Michigan State University for the Cultural Rhetorics Conference. Dr. Melanie Yergeau and I presented on Neuroqueer there, announcing to the conference the forum call and the community goals behind the concept and the conversation that has been generated around it. Sooooo yeah... I don't have a lot of essay in me on Autistics Speaking Day, because I did a lot of it yesterday. And I will have a transcript available on the Neuroqueer blog once I have time to put it together. But I don't have it in me to write a post.

They say that we're literal people, though, so I'll take the prompt literally. I set up my home recording booth this afternoon and put (most of) these spoken word performances together.

Go to Shaping Clap for more. 

Un Lieu pour nous/ A Place for us

Ole Ferme l'Oeil writes "Un Lieu pour nous/ A Place for us" from le pays des humains volants


Un Lieu Pour Nous
français

J'écris ce texte pour l' "Autistic Speaking Day"
Qui a lieu Aujourd'hui.

Cela fait quelques années que chaque été je vais à Autscape.
Autscape en Angleterre tout comme Autreat aux Etats-Unis, a lieu tous les étés, pendant trois à quatre jours.
C'est un événement organisé principalement par des personnes autistes et pour des personnes  autistes.

Et c'est une expérience qui a été d'une importance déterminante.
J'ai eu quelques autres occasion de rencontrer d'autres personnes dans le spectre autistique (plusieurs de mes collègues le sont d'ailleurs).
Mais celle-ci a quelque-chose d'unique d’irremplaçable
Un sentiment de communauté, le sentiment de pouvoir vivre dans in lieu où nous nous sentons pleinement acceptés tels que nous sommes. La réalisation qu'il est bel et bien possible de répondre à nos besoins en matière d'accessibilité et d’aménagements.
Et à présent.
Je jette un œil sur les deux pays qui sont les miens (Je suis Suisse, enfin de la partie francophone,mais j'ai aussi la nationalité française.)
Et rien de ceci n'existe.
Et je sens un besoin, un besoin terrible, tant de gens qui se sentent seuls, de gens qui sentent qu’ils ne se sentiront à leur place nulle part, des gens qui croient qu'il y a vraiment quelque-chose qui cloche chez eux.
Et je veux développer ça, je veux participer à l’élaboration d'un autscape francophone, voir de plusieurs,  mais aussi d'autres lieux de rencontres partout dans les villes de France et de Suisse Romande, pour des rencontres annuelles, mais aussi mensuelles ou hebdomadaires... voire des lieux ouverts tous les jours.
Je veux voir se mettre en place un équivalent francophone à ASAN (autistic self advocacy network)
Je veux voir se mettre en place une communauté autiste francophone ou même un ensemble de communautés autistes francophones, ouvertes à toutes les personnes autistes francophones (qu'elles soient professionnellement ou auto-diagnostiquées) ainsi qu'aux cousins (personnes neuro-atypiques non autistes mais assez proches d'un fonctionnement autiste pour se sentir bien dans la communauté autiste)
Avec un groupe d'amis sur le forum Asperansa nous avons commencé à élaborer le projet d'un équivalent à Autscape en Suisse romande ou France voisine. ( http://forum.asperansa.org/viewtopic.php?f=6&t=5740 ) qui est avec nous ?

p.s. pour les curieux voici le site d'Autscape (mais il n'existe qu'en anglais): http://www.autscape.org/

A Place For Us:
English


I'm writing this for the "Autistic Speaking Day"
which happens today

since a few years, each summer i'm going to Autscape.
Autscape, in the UK, just as Autreat in the US, happens each summer, for 3 to 4 days.
It's an event mainly organized by  autistic peoples and for autistic people.

And it's an experience that was of a determining importance for me.
I had a few opportunities to meet with other people in the autism spectrum (a few of my colleagues are by the way.).
But this one has something unique, irreplacable.
A feeling of community, a feeling that we can exist in a place where we are fully accepted the way we are. A feeling that our accessibility and accomodations needs are possible to fulfill.
And now.
I'm looking at both my countries (I'm from Switzerland, well the french part, but I also have the french nationality)
And this doesn't exist.
And I see a need a terrible need, people feeling lonely, people feeling like they won't belong anywhere, people thinking there is something terribly wrong with them.
And I want to develop this, I want to contribute to the elaboration of a french-speaking autscape, or a few of them ,  but also other meeting groups all around France and the french part of Switzerland, for yearly, monthly or even weekly encounters... or even places open daily.
I want to see a french equivalent to ASAN happen (autistic self advocacy network)
I want to see the beginning of an actual french speaking Autistic Community  or even french speaking autistic communities, open to every french speaking autistic person (wheter oficially or self-diagnosed) and to cousins (neuroatypical/neurovivergent people who are not autistic but close enough in their functioning to feel better into autistic spaces)
With a group of friend on the Asperansa forum We began the project of an equivalent to autscape in french Switzerland or the neighbouring part of France (link is in french of course: http://forum.asperansa.org/viewtopic.php?f=6&t=5740 ) who's with us ?

p.s. for people interested in Autscape here is the link to their website: http://www.autscape.org/

It's Autistics Speaking Day & I have not much to say

Neurodivergent K writes "It's Autistics Speaking Day & I have not much to say" on Radical Neurodivergence Speaking


Today is I think the third? anniversary of the day some Australian group decided that not using social media was analogous to understanding being autistic. And a couple friends of mine said "ummm how about you listen to us instead?" and it's still going strong.

My first post on this blog was for that Autistics Speaking Day. This post is too. Except I don't have a whole lot to say.

I've been saying the same things for half my life. I've had to say the same things for half my life because people, on the whole, don't listen. I don't have much new to say because that would build on the old. Until the old is heard the new won't make sense.

I dearly love making sense, even though it tends to make angry people who don't want to understand.

If you are a parent, your child still needs to know they are the child you wanted and dreamed and hoped for. That isn't going to change, though I'm sad I have to keep saying it. If you are an Autistic person, you are a person who deserves to be treated as such. If you are my friend, know that I love you fiercely. If you are my community member & I haven't met you yet, welcome.

Maybe next year there will be call to say something new, instead of self echolalia. Echolalia is also communication, though, so it will meet my needs for now.

Image is a beaded bracelet that says YES on one side & NO on the other. It's a way of speaking when mouthwords won't work. 

The State of the Black Autist

Timotheus "Pharaoh" Gordon writes "The State of the Black Autist"

I proud to say that since my initial diagnosis in 1990, society has come a long way from the “dark ages of autism”. Growing up, I had only a few options: be institutionalized, spend the rest of my life with family, or spend my adult life in rehabilitation centers. I dreamed of going to college, not spending all my school years in special education, enjoying independence, and pursuing a career in whatever passion I desire. Only a handful believed that I can actually achieve it. Back in the 1990s, I don’t recall having heroes on the autistic spectrum. Sure you have the savant on films, but that’s about it. There were no real-life autists and aspies in my book. The world seemed unprepared for dealing with people on the spectrum, because they weren’t as many supportive programs.

In 2014, I admit that it’s actually a great time to be an aspie or autist. You can be the IT whiz, writer, professor, artist, activist, athlete, musician…any passion you love, you can do know with little objection. I see more people on the spectrum attend mainstream classes and excel at post-secondary institutions. We don’t have to rely on just Raymond Babbit for inspiration. There’s Stephen Wiltshire, Sondra Williams, Donna Williams, Dr. Temple Grandin, and others who are role models for the autistic community to follow and emulate. More efforts are being made to employ people on the spectrum. We can live independently and even go to groups that are tailor-made for our needs, without relying on parent-oriented orgs like Autism Speaks.

I’m liking the chances that I have today, but I feel like I’m still an outcast to my own community. Perhaps it’s because that not only I’m autistic, but also African-American. I wish my ethnic group can be more supportive of the African-American autists. I don’t why autism can be a taboo subject. Maybe my community was taught that autism is the devil and it needs to be fixed, considering that the African-American community is built on Judeo-Christian beliefs. For some believers, the autist is a gift from God and needs special care. Sometimes for black autists who are capable of independence, this could mean facing constant overprotection from family and friends.

I think this fear also have to do with the notion on trying to “be normal and cool”, like the entertainers and athletes. Or perhaps being autistic can suck for an black person like me because intelligence and geekery equals “acting white”. Talk about your crab in the barrel situation!

Also consider the access to health care centers and schools that can help autistic people. In the inner city, or any area that is primarily of African descent, health and autistic programs are not as abundant, accessible, and adequate as ones in other neighborhoods are. In Atlanta, for example, 40% of autistic children in the metropolitan area were diagnosed at only schools. Basically, you can only afford the school psychologist to try to evaluate the autistic child.

By the time black autists enter adulthood, like me, they are totally screwed. Black unemployment is general is a pain, on top of all the other pressures that the black community already have to face, like lack of education, broken families, drugs, gang culture, etc. Unemployment and underemlpyment is still an issue for people on the autistic spectrum in general. Throw in the struggles to interact with people and the odd reactions to certain mannerisms, and you witness the negative cloud that is over the black autist.

But no worries, it more hopeful for the black autist than you think or see in the media. I thought I have no autistic hero to emulate in the black community, until I read about Maurice Snell. He graduated from college and now holds a position at Easter Seals Metropolitan Chicago. If he can rise up to get the job that he loves, then so can I!

Black people on the spectrum can do it too. But it will take plenty of love, willpower, and support. Families should look more at the positive sides of the autistic spectrum, or matter of fact, accept the autist or aspie more instead of nick-picking at their ways of life. I wish that my ethnic group can buy into more autistic ACCEPTANCE than AWARENESS. Geekery is fine; it doesn’t “strip” my blackness or African-American heritage. We should form self-advocacy groups specifically for the black community.

But more importantly, we, the autistic people in the African Diaspora (including myself) should not worry about those who try to derail our dreams. We can take examples from the Stephen Wiltshires and Maurice Snells of the world, and be shining lights in our community. Furthermore, we should know that the autism community at large has our backs. Besides, we are all bond by a condition that non-autistics still can’t grasp and understand the benefits that comes from it.

Autistic Pride and What You Need to Know

Kit Mead posts "Autistic Pride and What You Need to Know" on Pagination Imagination tumblr and Paginated Thoughts blog

[TW: Includes links to the abuse of Autistic people and violence against them, as well as "quiet hands" and seclusion.]

Autistics Speaking

Our methods of communication may not be what you are accustomed to. Sometimes we use assistive technology or just flapping intermingled with words to get the point across. But we all have things to say. Listen.

To all my fellow autistic people

Kristin Guin writes on tumblr:



To all my fellow autistic people who believe in God: You are loved fully and completely by God. Your autism is not something God has given you to overcome to prove His power. God does not need His power to be proved by His children overcoming God-given integral, inseparable parts of ourselves. God proves his power by the depth and breadth of the love of ourselves and others because, if we love ourselves, that means we are proud of ourselves, and pride in ourselves is empowering. God made you autistic because He recognizes the beauty and necessity of neurodiversity among His children.

Being an Unperson

Abby posts "Being an Unperson" on Autistic Shark

Being an unperson is being treated as unable to make decisions. Unable to have opinions. Unable to want things.

Being an unperson is having people try to fix you. Having people try to make you human and whole.

Being an unperson is having people talk to a stereotype instead of you. It’s having people talk to your autism, or your depression or your Sad Feelings instead of you.

Being an unperson is people being convinced you have no internal motivation, and they must construct it for you, out of gummy bears and M and Ms.

Being an unperson is being treated as a problem to be fixed, behaviors to be modified, someone else’s woeful burden, someone else’s grand accomplishment.

Read the rest

I'm Tired

Becca has written "I'm Tired"

As an autistic person, a lot of what I see in the world makes me angry. The talks of erasing 

us, the Kelli Stapletons, the constant speaking over the top of our voices. The world calls us 

violent, yet what I see whenever I open my eyes is angering and, yes, incites me to want to 

be violent.

But mostly, I am tired.

I’m tired, because no matter how loudly we shout or how well we explain ourselves, no one 

listens.

I’m tired, because the world only wants to tell us that we are wrong and we can’t possible 

know ourselves better than them.

I’m tired, because all I hear from my autistic friends is the same angry story, halfway 

towards giving up on it all.

I’m tired, because I can’t risk speaking who I am, so I have been forced to be someone I 

cannot be.

I’m tired, because there’s nothing I can do without stepping into a place that was designed 

to be uncomfortable for me at best, deadly at worst.

I’m tired, because when they do acknowledge us, they paint a picture of us that we are not.

I’m tired, because the only time they care about us is to make themselves feel better, 

meanwhile continuing to disregard our realities.

I’m tired, because I have to make up lies to protect myself from a world that wants me dead.

I’m tired, because no one is willing to see that I am me, that I am not something buried 

under what they see as a disease.

I’m tired, because whenever I speak up, my voice is too quiet, too easily drowned out.

I’m tired.

How can I fight for my very life when I’m so tired?

When I hear you say

chavisory writes "When I hear you say" on Chavisory's Notebook

When I hear you say that we have no language,
it’s as strange and sad to me as if you had said
There are no stars, because you’ve never
been out in the country at night. Never lain out
in predawn dark in a frozen roadside field
to see the Leonid showers.

That the pulsing lights of fireflies
are meaningless chemical blips,
not love songs in Morse code.

It makes me think you’ve never known
the easy comfort of reading together,
sharing a porch filled with morning sunlight.

Not known the thrill of the first time
you realize you’re sharing a thought
without even a glance.

Never spent a Friday night looking up
radio interviews for the pleasure
of hearing your own accent,
your own native dialect of metaphor,
spoken for just a few minutes.

It’s like hearing you insist that the feeling of walking
barefoot through soft grass can’t exist
because you’ve never done it.

That you’ve never gotten a letter in the mail, only catalogues and bills.

You’ve never read poetry; your school library had only textbooks.
There are no fairy tales in Icelandic, because you don’t speak it.

Never heard the soft fractal murmur of breeze
in oak and elm and walnut boughs in August,
the heartbeat drone of cicadas.

It’s always been winter.

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 ways of reacting

ischemgeek writes Autistic ways of reacting
 

November 1st is Autistics Speaking Day.  I have been trying to write something, but unfortunately my words have been giving me trouble for a few days, a result of a relatively-minor-but-traumatic incident earlier this week that I can’t talk about owing to privacy reasons (I will reassure you that I’m physically unharmed and not in danger) that for now seems to be the only thing I can write about with ease. Autistics Speaking Day is important, though, so I am writing something even if I won’t be happy with it. Since I need to be done this, I’ll tie it into earlier this week tangentially because it’s something I’ve been thinking about a lot.

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Ever since I was a kid, I’ve seemed to have this emotional delayed reaction to big things – good and bad – that happen in my life. My routine being disturbed might not result in a meltdown right now, but in a few hours or tomorrow or three days from now? Oh gosh yes.

This has resulted in people alternatively calling me an emotionless robot or telling me I hold grudges and need to learn to let things go. Often the same people at different times. How I can be both emotionless and prone to holding grudges and being unforgiving, I’m not sure, but that’s what they called me.

The fact is, I do have emotions. Often very powerful ones. Sometimes ones that overpower me. But I have a few issues: The first is low emotional self-awareness. The second is an apparent time-delay in my emotional reactions to things, and the third is of course my autistic difficulty with finding my words in the heat of strong emotion. Add in autistic shutdowns, and it’s kind of a recipe for mis-communication and being baffling to neurotypicals.

Low emotional self awareness means that i can be – often have – building up to full meltdown without even knowing it. On a really low self-awareness day, I can be crying or raging over something and not even know that I’m crying or raging, let alone why. Tears will be streaming out of my eyes, and I’ll insist I’m fine, it’s just my allergies. Not because I’m lying, but because my conscious brain is genuinely unaware of how upset I am.

The time-delay of reaction is I think associated with processing time. I need time to absorb and think about what just happened before I can/do respond to it. Don’t assume that just because I haven’t reacted badly to something yet, I won’t. A few years ago, when a friend of my family died, I did not react for a month, and then I had a 3-day meltdown. In a less-extreme example, I did not react emotionally for the better part of a day after the incident earlier this week. I was brainfrozen, talking when prompted an reacting to things, but not really processing much of what was happening. In both cases, people who’d been congratulating me on my strength or deriding my apparent lack of feeling were both completely taken aback. I don’t get emotional – I’m an emotionless robot, remember? I’m supposed to not react emotionally to anything ever, and when I do it doesn’t fit with their thinking of me as an emotionless robot and so they tell me there’s something wrong with me that I don’t feel in the first place, but then say it’s my fault when I do react in my own time, I’m “being manipulative,” or “need to let go,” or “putting on a performance.” I wonder how many of these things people would believe of me if I was a man and not a woman, but that’s not the way my gender developed.

And, of course, like many autistic  people, I lose my words when I’m emotional or upset. In fact, for me, increased difficulty with talking and writing is one of the most reliable signs that something’s off with me emotionally. I notice I, um, I. I-I, uh.I’m talking, uh. Talking like- talking like this. I notice that stringing words and sentences together is like trying to herd cats while wading through a chest high vat of molasses. I notice that words I know and I know I know seem to have gone missing, and I have to talk around them. I notice all these things and more, and it tells me something’s off and that I need to go somewhere away from others so I can process and figure out what it is.

Unfortunately, when I’m having trouble with words is the worst time to try to talk over stuff with others, but it’s also when others want to talk it over. Good communicators will accommodate me accordingly, while bad communicators assume that not being able to string the right sentence together and say it is the same as having nothing to say.

All of this brings me to my point: I am certain I’m not the only autistic person to react non-neurotypically to big stressors in my life. We need to discuss and raise awareness of autistic ways of reacting to things, so that people know that not seeming to feel is not the same as not feeling, that not reacting immediately is not the same as not reacting at all, and that not being able to express oneself is not the same as having nothing to express. We need people to know about autistic ways of reacting, and to support us in our own stressful times.