Autistics Speaking Day

Changing the Name of Autistics Speaking Day

2011-11-15T09:05:00.000-08:00

I came up with the name Autistics Speaking Day rather impulsively, when it was mainly a jab at Communication Shutdown and somewhat towards a certain big-name "Autism fundraising" organization, and when I didn't expect my proposal to be so well received. I kept the name mainly for the history of it and the nifty acronym it created. However, there is an issue with it, an issue that I have been all too aware of from the very beginning.

The issue of the word "Speaking".

The implications of the name has both Kathryn and I concerned. We have tried to make it clear that we consider the "Speaking" part to be figurative, that communication of any sort is welcome here, that what matters is that Autistics who want to participate can do so, in whatever way they feel the most comfortable, to communicate what they want other people to know about themselves, about their lives, about being Autistic, anything at all.

Yet, the issue remains, and the last thing either of us want to do is continue with it unaddressed. We would rather address it now, when we can get the feedback of the community and have the time to make the changes needed in preparation for next year (assuming that people still want ASDay to continue).

So, we ask our community: would it be more inclusive if we changed the name of Autistics Speaking Day? If yes, then what do you suggest we change it to?

Please follow the link to the poll form and submit your response there. Or else leave a comment here.

Juste un Message/ Just something to say

2011-11-13T21:55:00.001-08:00

Ole Ferme L'Oeil has written Juste un Message/ Just something to say on le pays des humains volants

I suppose this text could be considered as a very late contribution to the Autistics Speaking Day.
English version is after the french version.

Français:
Je suis Autiste.

Je préfère être qualifié d'Autiste ou de "Personne Autiste" plutôt que de "personne avec autisme"

Je considère l'Autisme comme une partie intégrante de qui je suis, je ne pense pas que je serai le même sans ça.

Je ne considère pas l'Autisme comme quelque-chose d'universellement négatif, je pense qu'outre mon identité, mes qualités sont intrinsèquement mêlée à mon autisme.

Je ne laisse pas à quiconque le droit de réfuter cet aspect de mon identité, ma perception de moi-même, je suis la personne la plus à même de définir ce qui ce passe en moi ainsi que qui je suis.

Je sais que toutes les personnes autistes ne partagent pas tous les mêmes traits que moi, certains sont même très différents de moi, comme beaucoup de mes amis dans le spectre autistique le disent "quand tu as rencontré une personne dans le spectre tu n'as rencontré qu'une seule personne dans le spectre"

Ces différences n'ont pas seulement à voir avec le diagnostique précis, certaines personnes qui sont répertoriées sous un autre diagnostique sont bien plus proches de moi que des personnes qui partagent mon diagnostique.

Je sais aussi que toutes les personnes dans le spectre ne partagent pas mon opinion.

Et cela n'a pas forcément quelque-chose à voir avec leur diagnostique précis ou si ils me ressemblent ou non.

Certains préfèrent être qualifiés de "personnes avec autisme" d'autres préfèrent d'autres termes encore.

Certains ne considèrent pas du tout l'Autisme comme une partie intégrante de leur identité, considèrent qu'ils seraient les mêmes, ou même mieux si ils n'étaient pas autistes.

Certains détestent leur autisme.

Parmi eux certains n'ont pas la même idée que moi de ce qui constitue l'autisme, d'autres si.

Je ne les contredis pas.

Quand je reconnais le droit à l'auto-définition, lorsque je le revendique je le leur reconnais aussi.

Ce n'est pas à moi de définir quelle devrait être leur expérience de l'Autisme.

Certaines personnes considéreront comme partie intégrante de l'Autisme des traits qui pour moi n'en font pas partie, que je ne partage pas forcément, ce n'est pas à moi de les contredire. (enfin, si, je peux les contredire sur l'universalité de cette expérience de l'autisme, et le ferai probablement si je suis assez en confiance et ai assez d'énergie émotionnelle ce jour là)

Certaines personnes qui partagent avec moi des traits que je considère comme part fondamentale de l'Autisme, ne se considèrent pas comme autistes...

Tant qu'ils ne se considèrent pas comme autistes, ils ne le sont pas, je n'ai pas à les contredire.

Oui l'autisme est un diagnostique, mais oui c'est aussi une identité, je ne laisserai pas des docteurs avoir tous les droits de définition de mon identité, mais je ne contredirai pas tous ceux qui font confiance à leur docteur pour tout ce qui concerne leur diagnostique, ce choix fait aussi partie de leur droit à l'auto-définition.

Je pense que rien de ce que j'ai dit ici n'est contradictoire.

Je ne pense pas que ne pas définir l'autisme comme quelque-chose d'intrinsèquement négatif revienne à prétendre que tout est rose pour les personnes autistes, je sais que beaucoup d'autistes qui comme moi considèrent l'autisme comme quelque-chose de positif ou de neutre et/ou comme une partie intégrante de qui ils sont, vivent des choses très difficiles, voire terribles.

Je crois au fait de différencier l'autisme des injustices et souffrances que la société peut faire subir aux personnes autistes, ainsi que du manque d’aménagements et d'adaptations disponibles

Certaines personnes qui sont d'accord avec moi sur cet aspect politique et social, font partie de ceux qui n'aiment pas leur autisme, ou ne le considèrent pas comme faisant pleinement partie d'eux-même, ou ne se considèrent pas comme autistes (voire n'ont aucun des traits autistiques, nous avons aussi des alliés... d'ailleurs cet aspect des choses est loin de ne s'appliquer qu'à l'autisme).

Ce n'est pas contradictoire, c'est une application du droit à l'autodéfinition

En tant qu'Autiste, Je me considère aussi comme une personne handicapée.

Je préfère les termes, personne handicapée ou personne en situation de handicap, je préfère éviter "personne avec un handicap"

Je me considère handicapé selon le modèle social du handicap*, je n'accepte que cette définition (ou peut-être les plus radicales).

Dans ce domaine aussi je crois à l'auto-définition.

Je crois à l'auto-définition pour tous, peut-importe le niveau de Q.I., l'âge ou que l'on soit verbal ou non verbal**, même si ça ne passe pas par la parole ou même par des mots.

Il fallait que j'exprime cela.

Si vous voulez en savoir plus sur mes opinions sur le sujet, et sur celles de personnes avec qui je suis généralement assez en accord, voyez cet ancien post du Jour de parole pour les autistes.

(Je préviens que je risque de trier les commentaires car je parlais ici d'un droit que je considère comme fondamental et que je ne suis pas toujours en grande forme ces temps-ci)

* J'ai déjà évoqué ce modèle ici et tâché de l'illustrer un peu là

**à peu près à ce sujet, je vous encourage... non, je vous exhorte à lire ce texte de Neurodivergent K. traduit par Benoit

English: (my English is not perfect, Sorry)

I am Autistic.

I want to be called an "Autistic" or an "Autistic Person", not a "Person With Autism"

I think that Autism is part of myself of who I am, I think I wouldn't be the same if I wasn't autistic.

I don't define Autism as something universally negative, I think that in addition to my identity, my gifts and strengths are entirely linked to my Autism.

I won't let anyone refute this aspect of my identity, my perception of myself, I am the best person to define what happens inside me and who I am.

I know all the people on the Autism spectrum don't share all the same features that I have, They are very diverse, some have very little in common with me, as a lot of my friends on the autism spectrum say it "When you have met only one person on the spectrum, you have met only one person."

these variation don't have that much to do with the exact diagnosis I received, Some people who have a different diagnosis than me have a lot more in common with me than some people who share my diagnosis.

I also know that not all the people on the spectrum share my opinions.

And this doesn't have to be about their diagonosis or how much they have in common with me.

Some prefer to be called "Persons With Autism" others prefer others teminologies.

Some don't see Autism as an important part of their identity at all, think that they would be the sames, or even better if they weren't autistics.

Some hate their autism.

Some of those don't have the same definition of what constitue autism that I have, some have almost the same.

I don't contradict them.

When I recognize the right to self-definition, When I revendicate it for myself I revendicate it for them too.

It is not up to me to define what should be their experience of Autism.

Some people will define as main characteristics of autism some characteristics that for me are not part of it, and that I may not even share, it is not up to me to contradict them on their experience and self definition of Autism (but I can contradict them on the universality of this experience of autism... and probably will if I am confident and have enough emotional spoons this day!).

Some people who share with me some characteristics that I think are core parts of Autism, don't identify as on the autism spectrum...

As long as they say that they aren't autistics, they aren't, I don't have to contradict them.

Yes "Autism spectrum disorder" (I loathe the word "disorder") IS a diagnosis, But AUTISIC IS ALSO an Identity, I won't let proffessionals have the right to define my identity, but I won't contradict those who trusts proffessionals (and "experts") to define anything that has to do with their diagnosis, this choice is also a part of their right to self-definition.

I don't think that I contradicted myself on anything I said here.

I am convinced that refusing to define Autism as an intrinsically negative thing IS NOT THE SAME as to impy that everything is o.k., perfect angd happy for all autistic people, I know that a lot of autistics people who, like me think of Autism as something positive or neutral and/or as an important part of who they are, are living very difficults or even horrible things (and in the worst cases are dying of it).

I believe in making a distiction between Autism in itself and the oppression that autistic people experienced coming from society, and the lack of accomodations for autistics people.

Some people who agree with me on this political and social aspect, are part of those who don't like their Autism (or hate it), or don't think it is a full and important part of themselves, or even don't identify as Autistics (or don't have any characteristics of Autism... I mean there are also allies... and these political and social oppressions are a problem for way more people than just autistics people, I think I am not teaching you anything there... well at least I hope so.).

All this is not a contradiction, it's an application of the right to self-definition.

As an Autistic Person, I also consider myself as a disabled person.

I prefer the "disabled person" terminology, I tolerate "handicapped" but I personally hate "person with disability", please, never use it to define me!

I consider myself disabled according to the Social model of Disability only*, I only accept this définition of being disabled (or maybe more radical models!**).

In this domain too I believe in the right to Self-definition.

I believe in Self-Definition for anybody, no matters the results of I.Q. tests, the age or if the person is verbal or not***, even without using speach or even words.

I had to express it.

If you want to know more about my opinions on this subject, and opinions of people I generally agree with, you can try my Autistics Speaking Day post of last year

(I have to warn you, I could moderate comments, I am not doing very well these times and this post express something I don't even want that much to debate on)

* On the social model of Disability: you can read this and if you want a further explication of why I only accept this model try this Wonderful post!

** On the radical models

***Kind of on this subject, I exhort you to read this post from Neurodivergent K very Important to read!

Autism and Wonder: a Celebration in Photos

2011-11-06T06:48:00.000-08:00

Cereus has celebrated ASDay with photographs in a post called Autism and Wonder: a Celebration in Photos on Dreamwidth

Nov 1st is Autistics Speaking Day!

Since I'm not particularly word-based right now and so much of my experience of autism is the world outside of words (and the connections and joys that go with that), today is going to be a picture day.
This is a celebration in photos:

First-class autistic, second-class citizen

2011-11-03T05:23:00.000-07:00

Melanie Yergeau has written First-class autistic, second-class citizen on Aspie Rhetor:

I am running late. Again.

The emails I compose are all the same. I’m sorry for my delay in responding to you, I write. And then I stare at my screen, sometimes for two minutes, sometimes for two days, and try to remember my excuse. Why am I late? Which metaphorical crowbar wrenched its way into my mental machinery this time?

Lately, I conceive of my days as a series of perseverative loops. The new job, the new home, the new and utterly non-autistic community. I cannot pry myself from anything. One egg, one piece of toast, and one butter cookie for every single meal. I read each Facebook status update 47 times before and after posting. “Let’s do something together,” a new friend or a new colleague or a new frenemy will write. And then nine days pass, or 39 days pass, and I’m still working on a two-line email response. Perseverative loop. Lather, rinse, repeat.

I can’t remember the last time I ate a vegetable. I’m not distressed by this — I’m more distressed by other people’s distress. The jokes about anorexia throttle me into monologue mode, and I launch into impassioned rants — sometimes about disability studies, sometimes about feminism, and sometimes about how much I wish the F-word were a tangible object that I could lob at ableist, self-important hacks.

Oh, F-word. Materialize for me now. I repeat this line to myself. 47 times. 47 times.

The days are a blur. I cry most nights, wishing I were somewhere back in time, a time when I could wrench my fingers, rock my body, and speak without inflection. In a bookstore. In public. With half a dozen others who wrench their fingers, rock their bodies, and speak without inflection. I miss this autistic chorus.

this

But I am here, not there. Autistics Speaking Day has come and gone, and here I am — still writing, still perseverating, still ensconced in my words and my tears and my veggie-less existence. My sense and use of time isn’t on par with the mythical norm. I am learning, or trying to learn, to take comfort in my lateness, to interpret my lateness as function without the dys, as function minus the -tio and n‘s. Fuc(k) function.

There are shitty moments on repeat in my head. The colleague who berates me for asking her to repeat instructions. The potential therapist who calls me a “phenomenal woman” for having the “courage” to lead a disabled existence. The internet trolls, plural, who variously tell me that I’m not autistic, that I’m ungrateful, that I lack the capacity to have capacity. The Autism $peaks undergraduates who, in response to me telling them how hurtful they are, claim that I “cannot silence” their “love.”

Perseverative loops, cumulative loops.

What I consider accommodating, they consider unreasonable.

What I consider insulting, they consider complimentary.

What I consider hate, they consider love.

What I consider feeling and compassion and emotion and just plain being in the world, they consider pathology and blight and madness and something just plain worthy of extermination.

And I wake up in the morning, ride the bus, step into a classroom, feign attention with my flat mousy voice and unruly hands. There are lists to make, silences to repeat, latenesses to embrace, F-words to embody. I take this as a lesson in breathing.

Other things than speaking?

2011-11-03T05:16:00.000-07:00

senoritafish has written "Other things than speaking?" on Visit the kelpforest:

So yesterday was Autistics Speaking Day (the autistic response to Communication Shutdown), and while I started this on the day, I'm finishing late, as per usual for me (writing as an ally, although I'm really not sure about myself). I'd asked Angus awhile ago if he'd like to participate himself, and all I really got was a frown; I'd sent him an email with a link about it, but he forgets to check it, friends don't email him like they do his brother, so if there's anything in there, it's probably from either me or his grandma, and what 13-year-old rushes to read those? In teenage fashion - which he is now - I theorize he's just thinking mom is bugging him again about something he's not really interested in. He's really not that interested in social media anyway - he does have a Tumblr account, but mostly likes the "Ask Anything" questions. He writes fairly detailed essays for school (and is praised quite a bit for vocabulary), but to do that outside of school? And not for fun? When he could be coming up with new comic book ideas or making up new piñata creatures for his Viva Piñata game...

Viva Pinata Ideas- Moosesicle by ~datadoggieein on deviantART

... or perusing various fan wikis for every last detail or trivia about the ones he has? Or going with me for a long walk, down to the end of the pier, maybe helping me find a geocache along the way? Coming up with the idea of being a plague doctor for Halloween, or even, finishing his homework - which he actually has been doing first, without prompting, lately (which I'm shocked and thrilled by, even I had problems with that).

Last night while I was making dinner, he did finally read the article I'd linked him to, brows knitted all the while, thought about it a bit, and then declared to me, "I'm not an auto-biographer, Mom!"

Ah well. Maybe in a few years, or in other mediums. Choosing to not speak (or write) when he could is also valid. He's got a lot of pressing issues just being an eighth grader. ;)

Go Listen.

My ASDay by Corina

2011-11-02T20:47:00.000-07:00

(originally posted on No Stereotypes Here)
(Post does contain Trigger-Warnings for images of injuries, but images are under external link, so post has been deemed Safe)

I never did get to finishing and posting the two posts I had planned for Autistics Speaking Day. I was going to explore the link between poverty and disability, as well as take a look at how crisis lines are ableist (aka, why aren't there online crisis chat services, why aren't there mental health services that disabled people who find leaving their homes or picking up a phone to be a challenge?).

But it never happened. There was just a flood of posts coming in that between taking care of them (I read pretty much every single one) and doing my own daily tasks, I didn't have time to write my own!

Luckily, I had a plan in case this happened, and took photographs throughout the day. The ones I posted on Twitpic can be clicked on to see the full photo.

So, I bring you, My ASDay:

First, I started the day at the Sleep Clinic. I have severe sleep apnea and had stayed the night in order to get my CPAP pressure checked. Turns out, my pressure needed to be raised.

my room at the sleep clinic

I woke up at 6am, and made my way home from the Clinic. My monthly bus pass had expired (new month), so I made a mental note to get it renewed. I'm on a Municipal Fee Assistance program, so I get a discount on monthly bus passes. I pay 46$ a month, instead of $60-something (the prices just went up, I used to pay $44).

I got home and noticed that I need to replace my bandaid. I had cut my finger at work. Here is a photo of it (which I'm not displaying here, for trigger warnings)

I also made sure to take my morning medications. I have two main meds that I take, one in the morning and one in the evening. The rest of my medications are as-needed meds, for things like acid reflux or when I need an extra boost to beat anxiety.

my morning meds

I sat down and started working on getting updating the ASDay blog. So many posts!!

ASDay Headquarters no.1!

At one point, I noticed a bit of a crash in the hall. A bit later, I went to investigate. The maintenance guy had been around, trying to fix the small window in our front door that had broke. He's been working on it for some time, and I think that it might be cheaper if the non-profit housing organization just replaced the door. It's an old door, original to the house, and it has quite a few cracks and leaks.

our front door and the glass for our front door

After that I spent some time chatting to my boyfriend, Dave, on Skype while I worked on putting up submissions.

Chatting with Dave aka Noyer on Skype

Then my house-mate B asked whether I'd like to go grocery shopping with him. His case worker came to pick us up and took us to the grocery store. I got some new hair clips, because I am forever trying to find clips that won't fall out of my hair and I just got my hair cut. I also picked up some of the Halloween makeup glitter on sale, and a few treats. I mostly got things I needed, including things for my lunches to go to work.

my groceries, about $60, a tad over budget but I figure I can afford it with a new job!
(stuff on the bottom rack are B's)

Since we were near one of the pharmacies that sells bus passes, I ran inside to renew my monthly pass!! B ran to the pet store for kitten food (for his kitten) and to the bank (to get cash to pay his share of the internet bill). We came home and put our groceries away.

Between semi-obsessional food hoarding and donations from friends, I'm stocked for winter!

I put away my non-grocery items as well, and opened up the hair clips to wear for the day.

Had bigger ones as a kid, I used to pretend they were alien monsters

I got back to work on updating posts, but also got a little distracted by housework. I did a little tidying around my room, swept/swiftered my floor and took out my recycling and garbage. Garbage days are Sunday nights, so I usually take the recycling and garbage from my room after Sunday, about every other week. Garbage/recycling is one of the chores around the house. My chore is to vacuum the carpets, which I try to do at least every other week. Right now, the upstairs carpets are fairly good, but since the kitten's litter box is downstairs, I think I need to do it soon.

Sweeping and taking out recycling

Then, I worked on ASDay posts again, and starting fixing my supper in the slow cooker. I made chicken with a pesto-cream cheese sauce, which I had with vegetable juice and rice. I usually put on these seasonings on my rice, and I'm pretty much out. Next time I'm near the Asian Market, I need to pick up some more. As I started up the ASDay IRC chatroom with the GimpGirl Community I made Apple Crisp for my Dungeons and Dragons group, who came over to play.

Remainder of DnD Apple Crisp

Before I played a quick session of DnD, I did a bit of work on my schoolwork, handing in an assignment due that day, and working on discussion questions. I also have an essay due next week.

Coursework, really!

Unfortunately, I couldn't get a photograph of my DnD group, but we had some fun. Afterwards, people left for home (one slept on the couch though, she was too tired to head home) and I got back to work on ASDay posts. Kathryn and I divided up the rest of the work, based on our strengths, and I managed to get completely caught up with the submission form list!

Caught up with posts! Yay!

By that time, it was kinda late for me, who had gotten up at 6am and had work the next day, plus school to work on. Kathryn had Wednesdays off, so it was mutually agreed upon that she continue on while I went to bed. So I did.

my bed! Bedtime!

Ta-Da! That was my day!

Powersuit: Autistic Self Portrait.

2011-11-02T04:58:00.001-07:00

On her tumblr Powersuit, Karin Mossberg has shared some self portrait photographs for ASDay. Please see her original posts to view the excellent photographs.

Autistic FaceBook Comments

2011-11-02T04:54:00.000-07:00

We had a couple of participants make comments on Facebook. I thought that we should make a post, just for them on the blog.

Facebook Comments

AmyOuellette

I don't have a blog so I'll just post on here :D

I'm 23 and have had Asperger's since I was five years old. I spent years getting Occupational Therapy services when I was younger and Speech Therapy services until I graduated from high school, which has overall helped me in many ways. However, I also feel like sometimes having gotten those therapies had only helped me to learn how to act like a neurotypical when I know I'm not an NT and am never going to be one.
My viewpoint on having AS, however, is mostly a nuetral/positive one :) I have my good days and bad days just like every other person. I feel like having AS has helped me be more empathetic towards other people who feel like they're different from typical people. I feel like my passion for advocacy would disappear if I didn't have AS, which is what I don't want.

Also, since I can't have more than1,000 characters in my wall post, my family and friends who knowabout my disability have been supportive the entire time and amgrateful for them having faith in my abilities even when I don'talways believe in myself :)

Thanks for giving me and otherpeople on the spectrum a chance to share :)

LorrieKoehler

I dont have a blog,but I will just say..Yes I have autism. Sometimes high functioningother times??? There are adults who grew up not knowing what was
sodifferent about them only knew they were different. I am one of them.I
was diagnosed about a year ago. Glad I finally know and can justbe myself.
Physically I am forty something.........Mentality?????? I guess it varies. Just wanted to speak on Autistics SpeakingDay.

JoQatana Adell

What I don'tunderstand is why people who suddenly become affected by autism getso angry with me. Is it because I can speak for myself when theirloved one can't/wont?

GlynSteiner

I do not have a blogeither. My word to others is this: Asperger's syndrome greatlyaffects my decision-making. And finally I have a mentality of ateenager.

NadineSilber

I don't a have a blogso I will need to just post something short. So here it is "onone foot" so to speak - good self esteem is even more importantthan good social skills. Afford people dignity. Do what you enjoy. Behappy with who you are.

DianeMacNaughton

Let us Rejoice in ourAutistic Voices and let everyone know it is Autistic speaking Day!!!And whoever we meet let us tell them of this great day!!! And that weare all different and can communicate in different and glorious ways.

CarolAnnEdscorn

New employee at worklast night. Chatty chatting chattering at amazing speed. I asked forinsight from a manager. Next time I go into work, using my auditoryrecall of topics (mostly past jobs & people SHE knew) I will havea list of topics of my OWN for sharing. Chatting is seldom sharing.But I think I can help this shift. This is a moment when that centralcoherence thing - attention to DETAILS - may help! Do people blatheras a habit or as a result of fear and anxiety? The puzzle pieceapplies to us understanding neurotypicals as well as theirunderstanding of us! Smile--it makes others wonder what you are upto! THANKS

DàibhidhMacNiocail MacAindreais

i have done nothingfor today. my life is in such a bloody mess that it's impossible todo anything. reason for this is the total lack of appropriate actualsupport that one gets in Finland was a foreigner with a disability:the Finnish system hates foreigners and hates the disabled, and ifone is both - then life very soon gets to be a burden more than ajoy.

JohnGreally

‎"I wanted myJohnny to grow up able to communicate for himself and to beindependent of his parents. When he grew up he told me he did notwant me and my husband running the local Autism Group while he wasbeing "provided for" and his "best interests"taken care of by "those who know". I then realized that mytask was not to have raised an independent communicator, but acrushed mute."

Wrapping up ASDay

2011-11-02T01:40:00.001-07:00

It is 3:36 AM my time. Here November 1st is over, but we are still accepting ASDay posts. If you have something to submit today, tomorrow, next week, next month, please let us know.

If we've made any errors or you would like the way your post is displayed on our website changed, also let us know. When I ran across ASDay posts and I hadn't been informed on how the author wanted them shared, I simply linked them. I'd be willing to edit these posts to add excerpts of the post with the authors' consent.

Also, we'd like to how you feel about Autistics Speaking Day. We hope to continue making ASDay better year by year.

Kathryn

A special thank you to Liz Ditz and everyone else at TPGA

2011-11-02T00:56:00.001-07:00

You caught a lot of bloggers' posts that I wasn't aware of. Thank you for that. We would have accidentally left out several posts if you hadn't gathered them for us and you were crucial to ASDay's success both this year and last year. I can't thank you enough for that, and I hope you'll continue to be a part of ASDay.

Into the Woods on ASDay

2011-11-02T00:32:00.001-07:00

Jennifer Myers writes on ASDay. Short with effective use of quotations.

Listen to the Silence

2011-11-01T23:45:00.001-07:00

Autism Jabberwocky on ASDay. I disagree with the opinions of the author, since he's using old data that doesn't represent the autism spectrum as it's understood today and we have several people attending who identify as being severely autistic--some even lack verbal skills to varying degrees. (I have nonverbal episodes myself.) A friend pointed out to me that the author does not recognize the difference between speaking and communicating, and I would be inclined to agree with that. Nonverbal autistic people can often communicate very well with text-to-speech software, technology, and sign language.

But I think that it would be dishonest of me not to include a post just because I disagree with it. I also agree that we need to do more to include people who are severely disabled in this community, but I don't think that denying their existence within this very movement is going to help matters.

People using alternate communication methods who are partially verbal or nonverbal may find this triggering, and those who are easily disturbed by hints that their disabilities are not real may find it triggering as well.

Autism From A Father's Point of View on ASDay

2011-11-01T23:36:00.001-07:00

Stuart Duncan encourages non-autistic people to listen to autistic people. Good post.

Liz Ditz's ASDay Posts

2011-11-01T23:31:00.001-07:00

Liz Ditz here and here.

More Than Disorganized

2011-11-01T23:11:00.001-07:00

More Than Disorganized on ASDay.

On Balance and Tempering

2011-11-01T23:08:00.001-07:00

Autistic Speaks on ASDay

Autistics Speaking Day: 13 Myths

2011-11-01T23:07:00.001-07:00

Sarah dispells some myths about autism.

How to Find Your Voice

2011-11-01T22:52:00.001-07:00

Jason Ross at Drive Mom Crazy.

Stephen Fry on ASDay

2011-11-01T22:43:00.001-07:00

Some of you may be aware that the famous actor Stephen Fry tweeted about ASDay last night. This resulted in many more people becoming aware of our event and I want to take the opportunity to thank Mr. Fry for this (and for just existing, because Stephen Fry invented being awesome).

The post read:

Stephen Fry
Today is Autistics Speaking Day, let's hope that the world will listen: autisticsspeakingday.blogspot.com @autisticsSpeak #ASDay

By the way, if you are not familiar with Mr. Fry's work, please search YouTube for some samples of it.

My life with Aspergers

2011-11-01T22:38:00.001-07:00

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

2011-11-01T22:35:00.001-07:00

Stephen Kelley's YouTube video for ASDay.

Jessica on ASDay

2011-11-01T22:29:00.001-07:00

Jessica's original post is here, and it has been reproduced below.

My entire life I have felt out of place. I am Deaf and attended a public school until I was 11 years old. While in the public school, I had no sign language interpreter and could not understand what was being said in the classroom. I felt different amongst my classmates and I knew it was because I am deaf. Kids were not including me in their activities and would tease me that I could not speak "properly". This changed when I attended a school for the deaf. All of the students and teachers could sign. I was more included at that school. However, I still felt different from them. It seemed impossible that I could still feel different and I constantly searched for answers.

I was 30 years old when I was diagnosed with Asperger's Syndrome. Light-bulbs went off in my head and I understood why I felt different in my entire life. One of the most important understanding I gained was why I seemed to struggle with some aspects of American Sign Language (ASL). The language required that I understand facial expressions and body language. Since non-verbal communication is not Aspergians' strongest suit, it helped me to understand my frequent frustrations related to ASL.

Badgering self

Whenever someone pointed out the "obvious" signs of an individual's emotion, I would beat myself up how I could have missed that. I am Deaf and should instinctively be able to interpret the appropriate non-verbal signs in ASL. Sometimes during a conversation a friend would bring up a particular non-verbal sign that seemed to be obvious and I would question myself whether I was incompetent in interpreting the invisible signs without assistance?

Self-doubt

I was constantly doubting myself whether I had shown the appropriate facial expression or body language to communicate non-verbally. Too often I have questioned myself whether or not that I had presented myself correctly and perhaps should have "known better". I wondered why it seemed to come naturally in others while I had to constantly practice by myself in front of a mirror. Occassionally I would have someone give a perplexed look whenever I was signing and I would wonder was it because I shown something facially or physically wrong?

Resentment

Over the years, I started to harbour secret resentment towards the non-verbal communication aspects of ASL. It seemed too complicated and stressful to maintain appropriate facial expressions and body language. Thus, I started to intentionally become stoic in order to keep myself "consistent" at all times. It was just easier that way to have one simple facial expression. No more self-analyzing required and I resented the expectation of using proper non-verbal communication in applicaple situations.

Now that I have been diagnosed with Asperger's Syndrome, I am slowly letting go my resentment towards non-verbal communication and to embrace ASL more. I am realizing that ASL does give me benefits in many ways. If only I had knew about the neurological difference I had all those years. I would have minimize my self-badgering and self-doubt.

Jodie Gray Rosenblum on ASDay

2011-11-01T22:27:00.001-07:00

This is Jodie Gray Rosenblum's post through Facebook. You may not be able to see it if you aren't on her friends list but she has given me permission to paste it here.

Alright, so I decided that I'm going to participate this year in autistics speaking day for those of you who read my stuff. So... I've read some of my friends post already, and I guess in some ways this is a bit of a response.

There's a line in a song by Third Eye Blind, that goes "But we were broke and didn't know." and that sort of will be the basis on my rambling here today. Well... we weren't broke/and we're not broke (though some people think we are, if you don't believe me check your local bookstore), but for some of us we didn't know right away. To quote another song "Some say its a blessing, some say its a curse." might be said for those who got the diagnosis as older children, teens, or adults. Some people feel that if they were diagnosed younger maybe things would be better for them now, some people feel it's a blessing they weren't diagnosed younger and subjected to hours, days, and years lost on therapies in their childhood. I think that I'm one of those who's more of the latter opinion. I really like songs, so bare with me on the heavy song references throughout the post please.The song "American English" by Idlewild says "Maybe you’re young without youth , Or maybe you’re old without knowing anything true. I think you’re young without youth" and "Sing a song about myself, keep singing the song about myself. Not some invisible world." I think that today, some of us are doing that second thing. Not everyone's post look the same, in fact a lot are in different styles from other's contribution. Just like how everyone is so different, autistics, the larger neuro-diverse community, and neurotyicals (and I do really mean everyone).

I know I have some friends who seem to live in a world where asperger's syndrome or PDD-NOS is placed upon some privileged pedestal and I normally don't publicly argue with them about this, but today here in my post I'd like to say: I think your wrong in your pedestal that you've created, I believe in creates a wall of separation that divides everyone.

Finally, the last thing I think I'm going to attempt to touch on here.... are some brief thoughts on autism and empathy. I know that some people believe that autistic people or people with autism (take your pick, I'm not in the mood to talk about this topic today) lack empathy or are incapable of having empathy. Maybe they read it in a book, or heard it from other people. I know some autistic others have contributed to the suffering of others by their own words expressing a lack of empathy. The merriam-webster dictionary defines empathy as "the action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts, and experience of another of either the past or present without having the feelings, thoughts, and experience fully communicated in an objectively explicit manner; also : the capacity for this". I can't speak for others, but I know I cried the year I saw Scott Micheal Robertson's presentation on bullying at a conference back in 2010. One of the images he showed was a drawling by either a child or a teenager of that child going into heaven as an escape from the bullying and struggles of their every day life, heaven was a happy escape. On that day and that moment, I could say I've been like that person in the past. The experience isn't isolated either, I know I've felt the same when I've read stories of gay and lesbian teenagers committing suicide. I'd imagine that some of my friends have felt the same way too.

So, I'm going to end my note here with one final line from the song "Plea for a Cat named Virtue"- "And listen, about those bitter songs you sing? They're not helping anything. They won't make you strong.".

Final comment: For more on autistics speaking day, or to read other contributions, go to: http://autisticsspeakingday.blogspot.com/

Read the Label!

2011-11-01T22:22:00.001-07:00

Kelly Green at Autism HWY on person-first language.

A Thinking Perons's Guide to Autism on ASDay

2011-11-01T22:03:00.001-07:00

Their contribution is here. It includes a list of participants and background for the founding of ASDay.

Daniel's Amazing Words

2011-11-01T22:00:00.001-07:00

Jim Martin's contribution, regarding his autistic previously nonverbal son.

To Be Autistic

2011-11-01T21:58:00.001-07:00

(Trigger warning for possible upsetting language)

To be Autistic
Timotheus “Pharaoh” Gordon

He’s dark sinister, and cunning
Waiting to attack an innocent toddler
Poison the average mind…
Wow! Is that very stunning?
The kid’s still healthy
But is also abandoned, cold-blooded, and silent
Fortunately, he or she is Einstein or Woods
However…does anyone give a damn? Not today!
Professor X will adore him or her
For making a great contribution to Mother Earth
They often make a promise
To protect the mutants from the mob, forever.
On the other hand, it doesn’t matter!
The victim will still be labeled “jackass”.
And worst of all, he’ll continue to scare
And leave the person…battered.
Don’t worry though.
‘Cause it’s possible to defeat him.
When you beat the foe dubbed ‘autism’
Don’t look back! Just let the past go.
That was my philosophy at adolescence. When I, like the rest of the regular humans,
fear its curse. Autism is Pandora’s box: once the secrets’ out it may repel ones who love or give another proof of why the autistic should be excommunicated from
society.
That was my thesis on autism
As fifteen-year-old longshot
From the Chi
Man that’s a false ass statement!
Now that I’m grown
from a naïve prince
to a mighty and wiser
Pharaoh
True! Peers study me as if I’m an E.T.
Wondering how would I fit in the mirage called society
How would he think?
Is he able to please a dime-piece?
Does he communicate like us? Or is he a retarded beast? That’s the survey an autistic may get
It is true that I’m an InuYasha
Isolated from some of my fellow blood
Stereotyped by medical field and celebrities
As if this “disease” is killing me.
It’s true that
Autism might be the reason
That I shy away from the limelight
It may explain why
I had to give up
My doll
I’m guess I’m hyper-focused because of it, right?
But really people,
It’s not like I’m dying
Let’s just say,
I’m granted special abilities
From the heavens that a
Few
May ever have
Abilities that enabled
Einstein to reach for Nobel
Or reason behind
J-Mac’s 5 minutes of ballin’
As far as could remember in Greek etymology:
Autism = autismus (Latin )=
autosismos (state of being one’s self)
= autos- (self) + -ismos (action or state of)
Hence, to be autistic is to be yourself
If that’s so,
Then why some people
Still to this day
Think it’s abnormal to be yourself?
Why research to get rid of uniqueness?
-
Timotheus “Pharaoh” Gordon is from Chicago. He has loved writing since 3rd grade. Timotheus liked to copy poems and read history. Timotheus decided he liked poetry after turning in a poem for homework. The poem was funny and about his routine. Timotheus’s poetry has helped him grow his voice as an African American male with Autism.
Timotheus has been doing poetry for eight years. Timotheus is attending SCAD-Atlanta. Timotheus is studying non-fiction and free lance writing. Timotheus wants his writing to inspire people to do Social Justice and sports.

A Simple Wish and Dream

2011-11-01T21:49:00.001-07:00

Zoey from Spectrum Times on ASDay.

Autistics Speaking Day by Alexis Yael

2011-11-01T21:45:00.001-07:00

Alexis Yael on ASDay.

Finding the Right Planet

2011-11-01T21:28:00.001-07:00

This is Rainbow Goddess's post for ASDay.

One of the ways Aspies often describe ourselves is as a aliens, strangers in a strange land, or simply “Oops, wrong planet!” It’s an attempt to describe how we have a lot of problems fitting into a non-autistic world. I’ve seen a t-shirt on Cafe Press that declares, “Spock was not a Vulcan. He was autistic, with pointy ears.” A book for women married to Aspie men is called Loving Mr. Spock.

I think the problem is that I am actually not an alien. Or, if I am, I am an alien who looks exactly like everyone else. I don’t have pointy ears. I don’t have green skin. It’s as if I’ve landed on a planet where I look and, mostly, sound the same as everyone else, and no one can tell I’m an alien. Most people expect me to act like they do, and they don’t understand why I don’t. They don’t know that I’m on the wrong planet.

It doesn’t take long for people to realize that I’m different. “Hey,” they think, “this woman isn’t quite like me. In fact, she’s not quite like anyone I know.” Sometimes I think it’s that “not quiteness” that bothers people. Maybe if I were completely and totally different from other people, then they wouldn’t expect me to act like everyone else and be so caught off-guard when I don’t. I don’t get their jokes. Maybe I don’t even realize that they are meant to be jokes. Someone asks me how I am, and I answer, “Fine,” but I forget to ask, “And how are you?” in return. The clothes I’m wearing were chosen not because they’re fashionable, but because they’re comfortable. I don’t want to talk about the Kardashian sisters or the Real Housewives or who was voted off what reality show. But if you want to talk about Star Trek…. Unfortunately, not very many people do, unless you’re at a science fiction convention or have the good fortune to work with a lot of geeks. (And where you find geeks, you’ll probably find Aspies.)

When I was going to college a few years ago, two of my closest friends were from Japan and Korea. They didn’t have any preconceived notions of how Canadians were supposed to act. I imagine that to them, anyone not from their home country was “different.” I was no more different than anyone else. Kumiko and Yun Ji were more accepting of me than many of my fellow Canadians have been.

An Aspie friend of mine told me that he had a similar experience when he spent a few years teaching school on a First Nations reserve. Being white, he was automatically considered to be “different.” He wasn’t a native; therefore, he was different. While he was there, he had the freedom to be himself, because he didn’t have to try to pretend that he wasn’t different.

This is why Asperger social groups are important. When I’m at my Aspie group, I can be myself without worrying that I’m saying the wrong thing, using the wrong fork, asking the wrong question or not asking the right question. It doesn’t matter if my hair is a mess or I have a food stain on my shirt. I don’t have to worry that I’ve taken something literally that is not meant to be taken that way, because with Aspies, what other way is there to take something?

When I am with my fellow Aspies, it’s like I’ve finally landed on the right planet. Don’t beam me up, Mr. Scott; I like it down here.

She Has Aspergers

2011-11-01T21:17:00.001-07:00

Penni wrote "She Has Aspergers" on Watch Me As I Fall Apart

The elder of my two half sisters that is. My mother text me today.

“Have I told you that L has a diagnosis at last? She’s got Asperger’s Syndrome, altho scored high enuf to be classed as plain old autistic! Love Mum. XXXX (((Hugs)))”
Now first a little about my family. My mother and father split when I was tiny, so that I could stay with my dad rather than being adopted. When I was about eight my mother remarried and had to children with a man she met in hospital. These children were two lovely girls, named L and N. A few years ago she divorced that man, he was bad for her, and my sisters mental health. They all live with my grandfather Oop North. They used to live in the south near me, but Grandpa offered them to live with him, in the countryside, because he was too old to manage on his own anymore, mum asked me if it was ok with me, of course I said yes, because I wanted the best for her and my half-sisters, but it still hurt, felt like I was being left again.

L, like me has had problems from a young age. I was given a Special Educational Needs label of “Emotional and behavioural difficulties” at the age of six or seven. L’s problems were spotted when she was about eight. She had counselling and stuff through her school.
But there is quite some difference in the way we were dealt with. Eight years difference. A Fuckload of difference.

I was dealt with, dealt with is definitely the correct word, by being taught to shut up and hide my problems. Being told to behave. Being sent to a special school for three days a week. Being given endless acronyms explaining how to control my emotions, nobody asked why I was feeling like that though. Being bribed and punished into not being myself, into hiding all of me. Having a Learning Support Assistant sat next to be all through primary school, made me more a freak. She was helped with some counselling. With people trying to figure out why she was acting as she was. She was assessed for various things. She is borderline dyspraxic. And now has been diagnosed with Asperger’s. She has been helped in situ, not taken out of school, not sat alone in the classroom with a grown up next to her. But helped to cope where she is and tried to understand why she is like she is.

L is exactly like I was when I was younger. Always she has been the mirror of me. Just Eight years in the past.

So I was not surprised when my mother text me this info this morning. So many people seem to think that I’m a bit Aspergersish. L so similar to me, she is basically me with the advantage of the world having eight more years to understand this stuff between us. The description of Aspergers fits me like a glove, so to hear that the girl who matches me so closely has been diagnosed with it makes total sense.

I just hope that now she can get the right help and support, so that she does not end up as mad as me.

Rayn Autistics Speaking Day 2011!

2011-11-01T20:53:00.001-07:00

Rayn, an Emcee, Producer, and Illustrator, posted "Autistics Speaking Day 2011!" on AcidRayn.com and shares some of her experiences as an Autistic woman diagnosed in her twenties, with sensory and social issues. Please view her original post to read.

A Slow Adjustment

2011-11-01T20:46:00.001-07:00

J.C. Saunders posted A Slow Adjustment on Accepting Differences

So two months have passed by since I started graduate school in pure math at one of the best universities for it in Canada and probably North America: University of Waterloo. You want to know how I’m doing? Well, you can either have the short answer or the long answer. The short answer is the following:

Ack! So much work! How can I keep up with it! And how on earth am I supposed to schedule in writing novels and developing friendships and a social life (not to mention that’s difficult enough given that I’m autistic)?!

Okay, that was a bit of an exaggeration. But, yeah, graduate school in math is a lot of work and does take a bit of adjusting to it even for someone who’s good at it like me. While the number of hours I’m putting in is still relatively the same as I put in as an undergraduate, the intensity of the work has increased. While almost all of my undergraduate courses were certainly challenging, the challenge is on a whole new level in graduate school. And while I was aware that a graduate course is more challenging than an undergraduate course, I didn’t realise that that meant I could still get so bogged down in it, given that I’m only taking three of them.

There were ten classes to choose from and during the first couple of days of classes, I sat in on all of them. I remember being really surprised at how difficult a lot of them were to understand. And this was only in the first class as well. I quickly got it narrowed down to four from which I was to choose three. I then felt my passion for philosophy rise again and made a snap decision to take a philosophy course and got permission to take it as part of my degree so I only had to choose two out of the four math. I decided to just sit in on all four of them since the deadline for choosing was still weeks away.

So what happened? Well, I tried doing stuff for each course and then quickly got bogged down. I realized I couldn’t keep up with the work for all four math courses so I decided to audit two of them and continue to work hard on the other two. Well, because I had taken a bit long to decide on the courses, I ended up procrastinating on both the first assignments for the two math courses I chose to take for credit. I seriously worked my butt off in the last two days one of the assignments was due. And for the other assignment, while I did hear it mention in class, I forgot to pursue and only seriously found out about it 4 days before it was due! I did the best I could with it, but couldn’t really get anywhere with a few of the questions and actually went to the professor the day it was due and got him to help me. It turned out I lacked some of the background in algebra that was needed for the assignment and as a result, the professor extended the deadline for four days for me.

While I did get it done in time (and I now have both assignments back and know now I did great on each one), the professor really had to guide me through the solutions (without giving them away, of course).

After the assignment was passed in, I just had to breathe a sigh of relief and immediately dropped entirely the other two courses I was auditing. But lo and behold one assignment from each course I was taking I discovered had been thrown at me. I had developed a lot anxiety at this point. I kept on wondering when the madness would stop. On one of the assignment I actually ended working on it with another student from the Sunday afternoon before it was due until two o’clock on Monday morning in my office!
But then the bomb went off when I actually failed the midterm for the first course. I got 29% on it, although the average was pretty low anyway 63%.

At this point, a whole range of emotions entered my head. I felt fear, anxiety, and dread. Graduate school just wasn’t fun. Certainly not as fun as I had anticipated anyway. I had trouble comprehending that midterm score because of being a perfectionist. The only other time that I failed a midterm was in first year undergraduate, but it was still about 20% higher than this one and the course had an optional marking scheme that completely discounted the midterm. What happened to me just didn’t make any sense at all. I felt like I had fallen through the rabbit hole in Alice in Wonderland.

Having to deal with these issues as well as still getting used to a new place with a bigger university really made me just want to explode. I may have been able to cope with the work better and not get so anxious about it if I was back at my old small university Acadia in Nova Scotia with the same old professors and the same old group of peers. The number of times I got overwhelmed with work there was uncountable, but it rarely felt like anything I’m feeling now.

And because I’m in such a new place, I don’t really feel I’m taking the time to develop any friendships. I’ve developed acquaintances certainly, but nothing that I would call a friendship yet. And everything is still a little overwhelming for me, even though I’ve been without any math assignment for nearly a week until yesterday.

Adjusting to a new environment is certainly rough for me. I think I’m gradually getting the hang of it, however. I’ve just been given another assignment, although I’ve started work on it immediately even though it’s not due for another two weeks. And I’m starting to continue on with my fiction writing passion again as well since that was certainly thrown to the side. So it seems that things are slowly settling down.

I like to compare it to jumping into a body of water for a swim. When you first jump in, the water just overwhelms you and you shiver because of the coldness of it. After a few seconds, however, the water starts feeling warm and comfortable to you and you can enjoy an exhilarating swim.

I think I’m going to enjoy the exhilarating swim of grad school in math.

How Autism Makes Me a Better Parent

2011-11-01T20:41:00.001-07:00

Bridget Allen has written "How Autism Makes Me a Better Parent" on It's Bridget's Word:

I know many people who don’t know autism do not think of autistics as adults with families of their own. When it is mentioned, I bristle at the idea that I, or anyone else, is raising a family in spite of autism, so I thought I’d give a short, incomplete list of reasons why my autism makes me a better parent.

1. I have less expectations than non-autistics.
As a child, I never played with dolls, thought I’d get married, or imagined being a mommy. I didn’t raise children because having kids was what people are supposed to do when they grow up. I did it because I am needed, and parenting is one of the only things to ever come naturally to me. I have never thought ahead to my child’s first day of school, dance recital, football game, or prom. Although all three of my biological children were non verbal or semi verbal in their preschool years, I never felt the need to mourn the child I imagined I would have. I simply made note, got appropriate help when needed, and let them find their own pace.
2. I truly listen.
All the time to each and every word. In all honesty, I don’t have another option. That point where someone is rambling on and on and it all sounds like “blah, blah, blah”? Nope. I hear and process it all. When I can’t hear well enough to process, it makes me so overwhelmed, I have to stop my child and tell them I can’t listen right now, but I’ll come back to them in a few minutes. Anything else, to me, would be dishonest.

3. Gentle, constant honesty
I can’t lie, but that doesn’t mean I run around tactlessly blurting out truths in a hurtful way. My children sometimes don’t like what I have to say. If they have not put in a full effort, I call them on it, and if their actions are hurtful to someone, I let them know. However, my kids never doubt me. Promises are few and far between around here, but they do not get broken. When my children receive praise, it is genuine and not effusive.

4. Lack of embarrassment
The handful of times I’ve been embarrassed in my life, it has always been due to an intellectual slip up on my part. I have sympathy for the parent who is mortified when their child has a public meltdown, but on a personal level, I can’t wrap my head around it. Do I get dirty looks in the grocery store? Sure. I’ve had appalled neurotypical friends point it out to me, but I don’t notice and don’t care. I’m on my third child who has less than ideal public displays. I have been escorted out of retail establishments, yelled at by strangers, and had the police called on me several times all due to my children’s issues. Inconvenient, exhausting, and occasionally heartbreaking? Yes. Embarrassing? No. Therefore, how I handle these issues is not influenced by outside pressure. I handle each one based on that child’s needs, motivations and skill set.

5. Super hearing
Did that child really think they could get by with that without me knowing? Think again, dear one.

6. I don’t rely on my “executive functioning” or lack thereof.
I write things down. On bad days, the to do list includes items like “brush hair”. My calendar contains appointments set for things like renewing prescriptions and which day of the week my older son stays after school (even though it’s the same day every week). I actually remember everything, but everything is too much to keep prioritized. I don’t assume any task is too easy to screw up. When I do screw up, I work hard to forgive my imperfections. (I have a long way to go on that.)

7. Time management
Here is my autistic secret weapon. I have a near savant like sense of time. If you ask me to demonstrate or prove it, you will be met with a blank stare in which you should infer many four letter words are silently being thrown your way. I’m not a show pony or an autism novelty act. I don’t need clocks or watches to know what time it is or how much time has passed. I can accurately estimate the time any given task will take, and I am rarely wrong. In my head is a constant awareness of each second. I have to concentrate to not focus on it. I have no ‘I lost track of time’ moments, but they sound quite tranquil, and I’m envious of yours. Since this internal clock is my tool, I’m going to use it. If I’m late, there’s a good chance I had a meltdown. Yes, I still do that. No apologies, it comes with the territory, and I’m not supermom.

Disability is a Social Construct: A Sociological Perspective on Autism and Disability

2011-11-01T20:32:00.001-07:00

Lydia Brown has this post to offer for ASDay. Here is an excerpt:

Our culture says that to be fully functional and able means that one should be able to attend a mainstream school, complete university or vocational training if desired, obtain housing, obtain and keep a steady job, and marry and support a family if desired -- all without significant outside support or assistance. While it is considered socially acceptable to speak to a college counselor while in high school, see a math tutor for algebra or calculus, and even depend on
one’s parents for financial support through young adulthood (twenties or so), an individual is not considered fully able and functional if he or she is unable to do one or more of those activities without significant amounts of support from others.

By this definition, the definition propagated and permeated throughout the societies in which we live, we Autistic people are disabled. Some of us may be more disabled than others -- as some of us are more able to participate in life activities with less amounts of outside support, and others of us do now and will throughout their lives only be able to participate in some of those activities with significant amounts of outside support.

Don't forget to go to Lydia's blog to read the rest!

Silence and Solitude

2011-11-01T20:27:00.001-07:00

Alianne Sonderling has posted "Autistics Speaking Day: Silence and Solitude" on Authenticity in Communication:

The concept of autistic people having "voices" and 'speaking out" in the world, literally and metaphorically, is discussed at length in the blogosphere today.**

But what of our equally important rights to silence and solitude?

To communicate through pictures, writing, or sign language, if it works better or is more comfortable than speech?

To be allowed to modify our environment, or use adaptations, to defend against sensory noxiousness?

To not be constantly forced to socialize at times when we can't handle it?

To choose to spend time alone, without being insulted, othered, or pitied for it?

To stare into flowers, or fires, or shiny spinny things, or watch raindrops chase each other across windows, or engage with whatever stimuli hold us in silent rapture, and not be made to stop because it "looks weird"?

To, when other responsibilities allow it, spend hours engaged in solitary special interests and projects, without being demeaned for it?

To choose jobs that are quiet, calm, and/or solitary if we wish, and not be underpaid or nagged that we're "not living up to our potential"?

To opt not participate in noisy, overwhelming allistic social situations like parties and clubs - even if "everybody else does it"?

To choose friends and lovers based on actual personal compatibility, on our own timetable, rather than being rushed into socializing with anyone available because others think we need practice?

To not have friends and/or lovers at all, if we prefer that?

To not have allistic modes of social behavior pushed on us every moment of our lives?

In U.S. law, the right to remain silent is there to protect people against self-incrimination, and the right to freedom of association protects your right to spend time with who you want to (including yourself). For autistic people - especially for autistic people - freely chosen silence and solitude are an essential part of self-determination in a world dominated by allistic thought and social culture.

Participate in allistic culture all you want and are capable of doing, of course. It's just different, not bad.

But as we continue fighting for our "voices" and right to "speak out", let us not forget how important it is for us to also be able to say no, to be quiet, to be ourselves by ourselves.

**And, happily, most other days now too.

The problematic Notion of a Cure

2011-11-01T20:21:00.001-07:00

AutistLiam (@AutistLiam) has posted The Problematic Notion of a "Cure" on Facebook:

Firstly, Happy New Year to all pagans who celebrate Samhain, belated Happy Diwali to Hindus, Happy All Saint’s Day to anyone who celebrates that and Happy slightly-late Halloween to anyone who did that last night. And, of course, Happy Autistics Speaking Day to everyone.

Except many people won’t have heard of that last one. Today (1st November) is a day the Autistic community mark by speaking up, by writing, blogging, giving speeches or just talking to our friends about what it’s actually like to be autistic and about the challenges we face because of the unusual way our brains work and the joy that we find in our lives and even what we do all day. We do this because there are a lot of people and organisations out there who would happily talk for us and often talk over us. They make their voices very loud and put a lot of time and effort and money into getting people to believe what they want people to believe about autism – that autism is a “tragedy”, something that children and families “suffer from”, that autism is a fate worse than cancer or AIDS and that autism can be and should be cured.

A lot of autistic people, people like me, don’t agree. We don’t see the way we are as a 100% bad thing by definition. We don’t think it’s autism itself that causes us and our families to “suffer” – some of us don’t think autism necessitates suffering at all. We can see that cancer and AIDS are illness – and that autism isn’t. And we think autism can’t be cured and that it doesn’t need to be.

People often ask me “What is it like to be autistic?” This is quite a confusing question as it is very open and does not get to the point of what the person is trying to ask. Too often I find that what they really mean is the rhetorical question “Isn’t it really awful for you that you’re autistic and really great for me that I’m not?” but for the people who are actually curious I have a few answers.

          If I’m not feeling Socratic enough to ask “What’s it like being neurotypical?” my answer will go something like this: Imagine you’re at a party in a really crowded club. The music is really loud and everyone’s shouting to be heard over it. Lights flash on and off and they’re really bright. Now imagine a fire alarm goes off and everyone has to leave and quickly. But you discover the hard way that whenever anyone touches you a small electric shock goes through you. The lights are still flashing and no one’s turned off the music and all the people are crushing together around you meaning your skin feels like it might burn. People are shouting the directions to get out of the club but even if you can hear them they are talking far too fast for you to understand and you’re not sure they’re even speaking your language... Does that sound like a very unpleasant situation?

Well, being autistic isn’t like that all the time but it can get like that – except the loud music and fire alarm might be just children playing or the sound of rain against the window, the bright lights just fluorescent lighting or too much eye contact, the electric shocks might be caused by a gentle touch and the too-fast-different-language talking might be someone talking at a speed most people understand. My personal experience of being autistic is that some sensory experiences hurt, some of them always do, others only sometimes. And it adds up, the lights on the own might be okay but a loud noise might mean I need to leave the room.

          My experience of autism is of being very highly sensitive (on all of my senses) but not consistently. Sometimes I have no sense of smell, sometimes I find it hard to be in a room that had a person wearing perfume in it earlier. When I’m getting over-stimulated from the amplified sensory input I’m getting, I often wave my arms or twist my fingers together. Sometimes I bite my hands or hit or rub tables and walls with my hands and arms. I might make noises or say some words I like to say. Occasionally, I stamp my feet or hit my head on things. If I can leave the situation, I will.

          But I can’t ask to leave or explain what’s wrong or why I’m behaving strangely because the more overstimulated I am, the less able I am to speak at all, never mind speak clearly enough for most people to understand me.

          People will occasionally stop me here and clarify that they wanted to know about what it’s like to not have social skills. At which point I ask them whether they think it would be easy to learn how to socialise with people if they were trying to keep from getting overstimulated and were often told to stop doing any of the things they could do to keep calm. (I can understand not hitting things or biting myself in public, I can’t understand what people have against arm waving, feeling walls and finger-wringing). It isn’t easy to socialise with people with all this going on in the background, especially when people can’t respond nicely to me asking “Can you speak a little slower?” or “Can you make your question more precise?” and other people point and laugh if I wave my arms a bit.

          I find speaking difficult too as my brain goes much much faster than I can speak so if I don’t carefully say each word of what I want to say, I’ll say several different sentences at once and no one will understand any of them. I have a collection of words and phrases that I find easy to say and I say those often – it’s a short cut to make things easier.

          Because it’s not easy being autistic. But I don’t ever ever want to be “cured” and a lot of other autistic people feel the same way.

          Why wouldn’t I want to be “cured”? I just said that being autistic isn’t easy, don’t I want my life to be easier? Well, yes, I do want my life to be easier but I’m sure we all know that life isn’t easy. And “curing autism” and “making autistic people’s lives easier” are far from the same thing.

          One reason that the “cure” notion is problematic is that many of us find advantages to being autistic. For example, my autistic brain comes fitted with a brilliant memory, intense focus and unquenchable ability to learn. I’ve always had very strong interests and developed very good research skills to find out more about my favourite subjects and now I can use those skills to learn a vast amount about any topic in a short time. The way I think and speak is always very precise and direct which is very good for academic writing in Philosophy and probably in other subjects too. Though my directness can be misinterpreted as rudeness, many of my friends say they appreciate it and feel that socialising would be simpler if more people were as direct as I am. You did just read that, many of my friends feel socialisation would be easier if more people were autistic enough to say “I would like to be your friend. I would like to spend time with you and talk to you and hug you occasionally. Is that okay with you?” and expect a clear answer.

          Of course, a huge problem with the cure rhetoric is that it posits autism as an illness and in our society illness is seen as A Bad Thing That Is Always Bad. Autism isn’t an illness, it’s a lifelong neurological difference (or something very much like that, science may yet change its mind about what it is). Our brains work differently to how the brains of people who aren’t autistic work. We’re better than them at some things and not so good at others and all of us, autistic or not, are just trying to get along with our lives using our brains the way they work. It’s just that the world is a nicer place to be neurotypical than it is to be in a neuro- minority – the human world being seemingly built for people who rarely get sensory overload and can speak and say what they’re trying to say whenever they want to and who pick up easily on unstated social rules without having to study them and don’t need to concentrate very hard to follow them. It’s only ended up like that because there are more people who aren’t autistic than are and they forgot about us when they were making society and cities and religions and stuff. If we were in the majority, we’d probably forget them too. But having been forgotten and subsequently not fitting in is not the same as being ill. Autism itself isn’t painful (though over-stimulating situations are) and autism itself cannot kill you (though ill-advised “treatments” can, frustrated so-called carers can and depression caused by being constantly told you’re not good enough can). Autism isn’t contagious and it isn’t caused by a virus, bacteria or pathogen. Autism can’t be cured because the autistic aren’t “ill”; we just think a little differently and perceive things a bit differently.

          What I think is the biggest problem with the idea of a “cure” for autism though is what neurotypical people have historically and presently conceived of as a “cure”. Therapies, treatments, special diets, drugs and other “cures” have almost universally been measured by their ability or inability to make an autistic person “indistinguishable” from people who are not autistic. There are many problems with this. Most important perhaps is that, due to our differing ways of perceiving and thinking, what is healthy behaviour for a not autistic person can in fact be quite harmful behaviour for an autistic person. For example, if making my behaviour “indistinguishable” from my peers means staying in situations where I’m overstimulated without doing anything to calm myself down, it means withstanding increasing amounts of pain for the sake of other people. This leads to the second problem, a lot of the autistic adults I know have difficulty putting their own needs above other peoples (and yet strangely we are stereotyped as selfish) because they have learnt over the years that not-upsetting-people is so important that we must sit through pain for it, that other people’s desire not to be distracted is more important than our need to fidget, that other people’s disgust is more important than our spinning, flapping and chewing and other people’s need to ask pointlessly “How are you?” when they don’t even want to know the answer is more important than anything I want to say about stamps or trains or the fact that intersex people, conjoined twins, disabled people and people with dwarfism used to appear in Bestiaries. We learn, either explicitly or implicity, that how we are is wrong, is less, that how we think and feel and move naturally is Bad and Wrong and we are Broken. When all we are is different.

When “curing” autism means something different from “making autistic people look like everyone else no matter the cost” I might rethink my position on a cure. But for now I am autistic and I flap my arms and chew things and put my hands on my ears when things get loud. I repeat things I’ve said, I fidget and can’t sit still unless I’m deeply engrossed in what I’m doing, I don’t always understand what’s said to me and I don’t always say quite what I meant to. I can’t always talk and am learning sign language just to be able to keep communicating with my girlfriend when I can’t talk. I know lots about lots of things (though not so much about stamps actually) and I get on with my life. I’m autistic, I’m happy and I don’t want a cure.

Speaking

2011-11-01T20:14:00.001-07:00

@xcoffeezombiex has written "Speaking", found here.

This day means a lot to me, and I hope that in a few years I will be able to look back and see how much it has grown. It means a lot to me because I am autistic.

All of my life, I have felt the expected way of communicating to be a stressful performance because speaking just doesn't feel right most of the time (because of sensory issues around noise). Writing does, and the fact that this day exists makes me hopeful for the day when every way of communicating is seen as acceptable and relevant.
I don't really have much else to add, so here's a final sentence: Happy #ASDay.

Autistics Speaking Day 2011

2011-11-01T20:10:00.001-07:00

thoughtyautie has posted "Autistics Speaking Day 2011" on her blog:

So it’s Autistics Speaking Day, and I’ve been wondering what to write about. I’ve thought about “coming out” on facebook, and I still might. The night is young. But instead of trying to make an “inspire the troops” type of post, I decided to make a list – partly to educate, partly to advocate. There are other days in the year to get that inspirational jump start, so until then, enjoy, and happy ASDay, everybody. Keep speaking up, in whatever amount and in whichever ways you are willing and able.

Please read the rest of this excellent post here.

Raw Emotion

2011-11-01T20:09:00.001-07:00

Laura Eleanor ButLer made this post on Facebook:

My parents are wonderful people. They did not want to cure me, but I did. If I was normal, I would know how to ride a bike and nobody would force me to receive what I referred to as "optional therapy". They wouldn't leave me alone, because my parents were paying for me to recieve this undesired assistance. Why they wished to expose me to cootie-infested peers (by which I mean 'boys who were also recieving OT yet were somehow not miserable') I have no desire to learn. I did not belong among these cootie-ridden children, and whatever it was they were having us do simply made me feel worse because I knew if I was normal I would not be stuck there.

It still hurts, over a decade later. But I no longer wish to be normal. I simply wish for the next generation of autistic girls to suffer less than I did. There is a reason I believe in 'child-directed therapy'. Every autistic is different.

Be sure to read the rest for mroe details.

Speaking of Experts...

2011-11-01T20:04:00.001-07:00

A post from The Accidental Expert at Raising Complicated Kids.

As the mom of two kids on the autism spectrum, I usually have a lot to say. If you've tuned into my blog for any length of time, you've shared in our struggles, our heartbreaks, triumphs and funnies. From what people tell me, this is a valuable perspective, one that most outside the autism community have no real knowledge of.

But enough about me.

Today I am here to put the spotlight on a different type of expert. Those on the autism spectrum themselves. And specifically, those have been so brave and honest to share their stories. I applaud you and I thank you.

You have helped my family more than you know. From each story I read from an adult on the spectrum, I gain new understanding. Not of my world, but that of my kids. You have given me a behind-the-scenes view of their attitudes, their struggles, their strengths. And, on days when I worry about what the future holds, you give me a beacon of hope.

Today is Autistics Speaking Day. It's a call to those on the spectrum to speak out and to be heard. To have a voice, break stereotypes and increase awareness. Go check out what some of the participants have to say here. I think you'll be glad you did.

Autistics Speaking Day for Musical Autists

2011-11-01T20:01:00.001-07:00

CJ Diachenko posted Autistics Speaking Day for Musical Autists on www.themusicalautist.com and has opened the site up for Autistic Musicians to share their music.

In honor of Autistics Speaking Day – Ms.CJ would simply like to express her heartfelt dream and determination that this blog, one day, will be a site where autistics can have a place to share their music. To have an avenue for self-advocacy, without the threat of being exploited by the media.

What do I mean by “exploited?” You know like, the way many NTs can be towards Musical Autists. For example, “Oh look at how musically talented they are, even though they have autism….”

Have we heard that before? Yes. Is it right for them to push the YouTube clips in hopes that it will become viral and give the Musical Autist (99% of the time, this being a cute autistic child) 15 minutes worth of fame? Is that all there is?

What if the Musical Autist had a central platform for self-advocacy?

We are more than just another passing fancy.

Give us time to grow. To get our technology skills in order. You will hear from us. Especially on days like today! These musical gifts are gifts from God. They cannot be ignored, trivialized or infantiled.

Today is Autistics Speaking Day

2011-11-01T19:47:00.001-07:00

Emily on fearthemightyspork.tumblr.com posted Today is Autistics Speaking Day:

Today is a day for both autistic and neurotypical (non-autistic) people to express their experiences with autism.

I have self-diagnosed Asperger’s Syndrome. I’ve known for quite a long time how different I have been from everyone else… Years, in fact. But I never had a name for it, a proper name, until my mother and I watched an episode of House where he treated an autistic boy. We learned a bit here and there and both of us fit the criteria we found for AS. My sister is neurotypical. She does have a pretty big reading disorder (that is as-yet undiagnosed) but she still functions better than both Mam and I did.

My mother died last year on 9 November, and in the last year, I’ve felt lost without her. She and I communicated so much better than I communicate with anyone else. Even now, my boyfriend understands me better than anyone else on the planet, but my mother was the only person who ever understood even the most inarticulate gestures and noises I made when I couldn’t pull the words out of my brain. But she understood perfectly and we would laugh and have so much fun making jokes without making any real words. I miss my mother intensely.

This last year has been so difficult… But when I met my boyfriend, Chris, things seemed to get so much better… No. Wait… They didn’t just SEEM to get better. They became better. Chris makes my life better.

I’ve wished for a very long time that I could be neurotypical. I wrote a story once about a woman who was autistic and who was capable of marvelous artistic expressions. She could play multiple instruments, recreate priceless works of art, and was scientifically gifted. (I modeled her after myself, and I can do things she could, but to a lesser degree. Write what you know, you know?) Welp, at one point, she gets terribly upset and exclaims that she wants to be normal, and her sister explains to another character a little while later that “Luna would give up everything she can do, all the miraculous things that make her, her, just to be able to look people in the eyes as she told them she didn’t know why baking soda and vinegar react when mixed.” Luna meets a man with whom she gets that normalcy, despite still being thoroughly autistic.

I wrote that story before I met Chris, but when I met him, I got what I gave Luna - that normalcy, that feeling of being both different, yet the same as anyone else. Luna and I got our cake and got to eat it, too. (-:

That isn’t to say there aren’t challenges in the story or in my relationship with Chris… I’m prone to having temper tantrums in which I become overly petulant and sarcastic. I had one of those on Sunday last, in fact. And they hurt him a lot. I wish I could flip a switch and turn off those sorts of behaviors, but I can’t. I still feel absolutely awful for being so harsh, and I feel like the worst human being on the planet for hurting him so badly. I don’t want to be a villain; his ex carries that role, and he doesn’t need another person to try to join forces with her, intentionally or not. But I don’t know how to shut that off. Granted, I don’t often get upset enough to get petulant and sarcastic, and when I do, I almost never actually speak what I’m thinking to the person with whom I’m fighting…

I wonder what Chris sees in me that keeps him with me. He’s neurotypical and I wonder what it is about me that drew him in. It isn’t the easiest thing in the world for autistics and neurotypicals to date, simply because of how differently we react to the same stimuli. The sound of glass on glass, ceramic on ceramic, and glass on ceramic hurts my head and ears so badly that I stop what I’m doing and cover my ears with my hands. I can’t do the dishes because of that, and my reaction to that simple sound is, as I understand it, the same reaction people have to nails on a chalkboard. That sound has never bothered me in the slightest. And the sound of dishes clinking together doesn’t bother Chris like it does me. That’s just one example; there are countless more examples of the differences between my wiring and his. I love him with all my heart and I’m so thankful he loves me, but I still wonder why he was ever attracted to me in the first place.

I’m not easy to get on with. My personality is abrasive, my temper tantrums are primarily directed inward but when they aren’t, they’re quite vicious, sarcasm is my native language, I can insult people with words they’ve never heard of because I’ve read the dictionary five times and I can speak like one, too… I’m obnoxious, in a nutshell. I’m obnoxious and autistic… Not a great combination. But I love being like this, so I accept these things about myself. What I just don’t understand is why he accepts these things, too. My family accepts me because… Well, they don’t have much of a choice. We’ll be related no matter what. Chris has a choice whether he stays or goes, but he chooses to stay. It’s a modern mystery for me, but I decided a while back that you know what? I don’t have to understand. I don’t have to know how Chris sees me, I don’t have to know why he loves me, and I don’t have to grasp what makes him choose to stay when he could leave anytime he’d like.

I’m thankful for being autistic. I’m thankful for having had my mother in my life to make my autism something to appreciate and for it being something with which I could communicate with her. I’m thankful for my boyfriend and the level of patience and forgiveness he exhibits with me (he surpasses Christ, and I am *SO* not kidding). And today, I’m thankful for tumblr, because with this outlet, I can participate in Autistics Speaking Day.

Thanks for reading. *hugs*

Decolonizing Our Voices

2011-11-01T19:31:00.001-07:00

Savannah Logsdon-Breakstone on Cracked Mirror in Shalott has written "Decolonizing Our Voices":

Today is Autistics Speaking Day, a day when we are particularly asking our allies and allies-to-be to step back to allow the voices of Autistics ourselves to be heard and listened to.

When ASD started last year (2010) we were in essence protesting an “awareness” campaign that people who purported to be our allies had designed and promoted with heavy pity language. They had asked people not to post at all, to be silent and non-speaking online to draw attention to the communicative issues many Autistics face. I believe our response was pretty understandable not only was this basically online “crip drag,” but it also denied the fact that for many Autistics, online resources such as social media sites have given us a voice.

I myself had great strides in my personal development after getting online. I know a number of people who are Non-speaking Autistics whose ability to communicate was greatly augmented by online resources, and a number whose involvement in virtual advocacy have made the people around them rethink everything about their care. In short, Social Media and other virtual resources have done for us what having a ramp in a public building does for our chair using brethren. (I will freely admit that it doesn’t solve all our problems, and we still face hostility online and off that prevents access just as having a ramp alone doesn’t make your building wheelchair accessible.)

This year, Autistics Speaking Day is taking place at a time when we have people in the streets protesting economic disparity and corruption. For some of the protesters, there are harsh economic realities in their own lives motivating them- Homelessness, lack of accessible health care, and unemployment. Others feel that their voices as citizens have been infringed upon by corporate interests, particularly when it comes to our elections in the United States. Still others are driven by a need to undo injustice.

This movement of protests is popularly called “Occupy Wall Street,” so named for the action of camping- or “occupying”- public places such as Zuccotti Park in NYC or Mellon Green in Pittsburgh, or a wide number of other Occupying sites. However, a number of indigenous groups quickly pointed out that Wall Street has been occupied for centuries- it was originally Lenape tribal land.

So when their site started, Boston issued a solidarity statement with Indigenous Peoples, and were followed by a number of other sites. In light of this, some people have been using the term “Decolonize” rather than “Occupy” so that the voices of marginalized Americans- such as our indigenous populations- can be better respected and more easily centered.

People of Color are especially hard hit by the economic environment, and in a number of places the living conditions on reservations are deplorable. People with Disabilities too are feeling the economic burden our services are being cut, our programs redefined to limit our involvement in our communities, and supports being withdrawn under the excuse of “budget issues.”

After some thought, I’ve decided that there’s too much of a cross over for me in the work of Decolonizing Wall Street and of our voices as Autistics to not write this post today. While people in general are seeing their demands of their political representatives co-opted or diverted by corporations, Autistics routinely have our voices co-opted by our allies and diverted by large “non”-profits such as Autism Speaks. Many of us are frustrated by the lack of Genuine Voice that the general public hears from us. Instead of looking at the things that help us live our lives and improve the quality of it, research funding is sent to projects that could potentially prevent us from being born in the first place.

Indeed, when we speak we are dismissed using logical fallacies so that the voices of those who proclaim themselves working for our “own good” can be prioritized. Obviously, not all of our allies are like this. But some are, be they parents, professionals with pet theories, or Organizations whose bottom line would be effected by what we are saying. Those are the ones we are talking about when we talk about how our supposed allies need to step back and stop centering themselves.

The Protesters in the Occupy/Decolonize use consensus building as a process. This does have flaws by itself- those with pre-existing privilege can still flaunt it- but there are some principles that can and at some sites are added to mitigate those flaws. One of them is the concept of “Step back, Step up.” This means for people who have privilege- white people, straight people, cis people, men, and so on- to take a step back in the conversation, and to encourage those without your privileges to step forward so that they can be heard- something that won’t happen on its own. Without taking this into consideration, the same hierarchies that divide us out in the world will be reproduced in our movements.

This saying is the reason I’m bringing up the consensus process in this post- because the conversations we are having in the Autism and Autistic communities need to utilize the same principles. Otherwise no matter how good natured and well meaning people are, those who have less privilege will not be heard. And to me, this Principle is at the core of what Autistics Speaking Day is about. It is about us being heard when we try to step up, and about our allies supporting us doing that.

I’ve been involved from afar with the Occupy/Decolonize activities at Pittsburgh, PA’s site, working especially with the Marginalized Communities and Allies workgroup. The Safety workgroup took most of my comments about safety concerns for PWD and added them to the safety document. I’ve been encouraged to stay involved in the processes and networks being formed.

Most encouraging to me is that our site’s working groups have been prioritizing ways for people who can’t stay on site to be involved. Instead of the sentiments that if you aren’t at an action you aren’t really committed that have characterized some other movements I’ve tried to be involved with, I have gotten reassurance. Paul O’Hanlon, a protester with disabilities who has been very active both on site and off, told me to remember that they know that every person there is representing people who can’t.

That isn’t to say that there aren’t people who assign high value to people on site. There are still people who fail to recognize that even when we are eliminating our class barriers that our other oppressions and privileges are still intact. There are still people who don’t get the anti-ableism, anti-racism, and so on work is still very much needed. But I’ve seen what feels like great strides. Objectively, perhaps they aren’t that huge, but for someone who has had their voice sublimated repeatedly it feels huge.

Just as as a young teen blogging, instant messages, and other internet resources helped me to gain a sense of community and skills, the internet is enabling me to be involved. I’m someone who has not been able to physically be on site because of a number of reasons. I’m rural, I have to have access to certain services on a regular basis that would not be present on site, and I also have fibro Myalgia, which would make winter camping a mobility and possible safety hazard.

So I’ve been doing support work, editing virtual documents, and organizing accessibility work. I started a cross disability group called “Occupy Disability/Decolonize Disability” for people with Disabilities to network resources on both being on site and working off site. A friend with Multiple Chemical Sensitivities started #Occupy at Home to help people like us find ways to be involved. There’s even an “Occupy Autism Speaks” page to highlight the issues with that organization.

All of these things keep seeming to parallel to me the ways that Autistics have built community online when our physical environments have been barred to us. We’ve worked to create venues to be us in, to see the value of our forms of communication. To be involved as we are, not as others think we “ought” to be.

Today is the day we take back our voices. Now is a time when “The Whole World Is Watching” what is happening. Tomorrow is when we will continue to speak out- so please, keep on listening.

When what is covered demonstrates flawed values...

2011-11-01T19:19:00.001-07:00

Shark-Fu writes a post on insurance programs and their effect on autistic people. She is the sister of an autistic man and frequently posts about problems with support for autistic people in addition to her posts on gender and racial politics. She coincidentally posted this on ASDay and when I asked she agreed to let me link to it here. Warning for mild language.

On Bad Parents

2011-11-01T19:18:00.001-07:00

(Trigger Warning: contains mentions and some descriptions of child abuse, torture and murder)

Alexander Cheezem from A View From the Boundaries writes "On Bad Parents":

Today is Autistics Speaking Day. To follow in the tradition of last year, I'm going to take the opportunity to talk about something that I wouldn't normally blog about. Be forewarned that this is not -- at all -- a pleasant topic. In fact, it's downright disturbing. If you are a parent to an autistic child, this will be particularly disturbing to you. If you are autistic yourself, it will be equally disturbing in a completely different way. Be forewarned.

Towards the end of September, the blog The Thinking Person's Guide to Autism hosted a series of exchanges referred to on-site as the Self-Advocate/Parent Dialogues. If you haven't read it, I strongly recommend you do so -- including the comments. Yes, I know that's ten-eleven (depending on how you count) blog entries, many of which have an inordinate number of comments. I make this recommendation anyway -- and recommend it strongly.

During that exchange, a lot of issues -- many of which are very important -- relating to the parent/self-advocate divide in the modern autism world were discussed. By and large, the parents present were interested in helping their child and were willing to respect and try to understand the viewpoints and interests of autistic people. And, while I can't directly confirm this, I strongly suspect (and have no reason to disbelieve) that those parents love their children and wanted to do what they could to help them. I believe (and have no reason to disbelieve) that, to those parents, their involvement in autism issues was not primarily about themselves or their personal interests and desires, but rather about trying to raise their children.

One fact, however, was not mentioned during that dialogue, and it's a simple fact that while the above can almost certainly be said about the parents who participated in the Dialogues, it certainly cannot be said about all parents. Put another way, not every parent of an autistic child is a good parent.

"Good" and "bad" are relative, of course, and everyone makes mistakes. I'm not trying to demonize or stereotype the parents of autistic children here.

Still, there's an attitude among parents' groups characterized by the presumption that each parent loves their child and is generally trying to raise their child as best they can. There are three real problems with this -- and I've already discussed the first one. Specifically, parents are human and thus fallible. Even if a parent is trying to raise their child as best they can, this doesn't mean that they are.

The second problem with that presumption is far simpler. It simply isn't true.

I know I've repeated myself here. This was deliberate. The point needs to be driven in -- preferably with a metaphorical sledgehammer.

For years, I've been reading coverage of parents doing truly awful things to their children. Take for instance, Marguerite Famolare, as quoted in this article about the Judge Rotenberg Center. According to her, the center's systematic torture of her child is great -- after all, if she shows him the remote control to his shock harness:

He'll automatically comply to whatever my signal command may be, whether it is 'Put on your seatbelt,' or 'Hand me that apple,' or 'Sit appropriately and eat your food,'" she says. "It's made him a human being, a civilized human being.

I have to rather strongly disagree with her definition of humanity. Beyond this, I think that the quote speaks for itself.

Then there's the case of Karen McCarron, who I recently learned is trying to appeal her well-deserved sentence and get a new trial. Her story is, in a way, much simpler to explain -- she murdered her daughter and blamed her actions on said child's reified neurology. According to her lawyer, McCarron believed that Jesus would bring her child back, sans certain reified aspects of how she learned and experienced the world.

I did not select these two cases at random. While I could have picked from a lot more, including many not on that list (which is rather outdated at this point), they serve as illustrations of the fact that there are some phenomenally bad parents out there. Some of said parents have autistic children.

More importantly, however, they serve to illustrate another factor -- the ways in which certain attitudes prevalent in the autism world can be used as justifications for truly monstrous acts towards autistic people. When I object to, for instance, the reification of autism, I am doing so for damned good reason. When I talk about psychosocial stigma, I am not talking about something even remotely close to trivial.

Finally, these cases are public -- they have public documentation which I can link to. Trust me, I have a lot of examples from personal experience. I've spent a surprisingly large amount of my professional life trying to clean up the messes that bad parents and poor parenting decisions (of various sorts) have left behind.

The third problem with the attitude I referenced is central to the attitude itself and not the underlying beliefs. There is an old saying that "sympathy for the guilty is treason to the innocent." The saying -- and the underlying meaning behind it -- apply here. Yes, parents of autistic children often function without adequate support, are stressed, are under incredible pressures, etc. If, however, we choose to allow this to detract even one iota from our condemnation of this sort of parent's inexcusable actions, if we say that Karen McCaron's actions were "really about a lack of support" or some such, we are essentially arguing that the act of torturing or murdering an innocent child is excusable.

I disagree with this in the strongest terms possible.

Such actions need to be condemned. We, as a community, owe that duty to Karen McCaron's and Marguerite Famolare's victims.

I have, at this point, been writing this blog entry all day -- essentially dropping everything else in my life to do so. It is, however, phenomenally difficult for me to do so. As I type this sentence, it is 6:17 in the evening. I have been writing this almost since I finished breakfast.

As the amount of time I've spent on this text implies, this is not an easy topic for me to write about. I don't even like to think about parents such as those two. I originally intended to write far more about them than I did... but gave up on several (actually rather important) points simply because I couldn't bring myself to write them. In fact, I even dropped one major and prominent example of bad parenting from my list -- simply because I didn't think I could stand writing out another paragraph detailing such behavior. I know for a fact that I will regret that decision.

I would love to think that every parent was a good one, that (all) parents could be trusted to act in their child's best interests, and that we could count on parental love to ensure that our parents would be our allies.

Unfortunately, I know all too well that this is simply not true.

From Class ENG 416

2011-11-01T19:10:00.001-07:00

A group of students from ENG 416 at the University of Michigan have written some blog posts for ASDay, and their professor, Melanie Yergeau, has asked to have them posted on the blog.

Hanheeb - This I Believe, An Autism Credohttp://hanheeb.wordpress.com/2011/11/01/this-i-believe-an-autism-credo/

Trisha - Speaking up Amidst Silence: Autistics Speaking Day
http://tkpauleng416.wordpress.com/2011/11/01/speaking-up-for-autistics-speaking-day/

Mistuart - Autistics Speaking Day
http://mistuart.wordpress.com/2011/11/01/blog-post-6-autistics-speaking-day/

Feldjenn - AUTISM SPEAKING DAY! Yell it loud!
http://feldjenn416.wordpress.com/2011/10/31/autism-speaking-day-yell-it-loud/

Acov416 - Autism and Gender
http://acov416.wordpress.com/2011/11/01/post6-autism-and-gender/

Bpesqfish - Blog Post #6
http://bpesqfish.wordpress.com/2011/10/31/blog-post-6/

Alex - Video, soon to be posted
http://eng416autism.wordpress.com/

Autistics Speaking Day Born 2 Be Me

2011-11-01T19:07:00.001-07:00

Bruce from Born 2 Be Me has allowed us to link to his ASDay post from this year. Check it out!

http://born2bme.wordpress.com/2011/11/01/autistics-speaking-day/#comment-803

Community Matters

2011-11-01T18:51:00.001-07:00

Ari Ne'eman wrote an essay for on NeuroTribes, titled "Community Matters":

Community matters. One of the things I always appreciated about my first few weeks in college was the existence of the local Hillel — the Jewish student center active on my campus, and many hundreds of other campuses across the country. I was an out-of-state student going to a university where most of my classmates had grown up within no more than an hour’s drive of the campus. Having an immediate sense of community as a Jew was incredibly meaningful for me — and yet, I always felt a profound sense of regret that I didn’t have the same opportunities as an Autistic as I did as a Jew. Walking into the university disability services office was a far cry from the warmth of Shabbat dinner or outreach by campus Jewish organizations. Instead of being connected to others who could relate to my experiences as someone on the autism spectrum, I and other disabled students were usually greeted by a bored work-study student handing us a card upon which we could check one of a few “standard” accommodations — extended time, alternative print/braille, note-taking and a few others, crafted without thought to the needs of students like me. Anything else required a long wait and an uphill battle.

There are a lot of issues worth unpacking here — the low quality of support offered to disabled students in post-secondary education, the vast gap between programs focused around compliance and those focused around quality of life — but the one that I want to focus on today is the value of community. Being part of any minority group is always a challenging experience. Living in a world built for people who are not like you is alienating, whether it’s because of the way your brain works or because you don’t celebrate Christmas. In the disability world, we use concepts like the social model of disability to explain this experience. Service-provision and reasonable accommodations and any number of other things we fight to receive are intended to bridge the gap between the world as it is and the world as we’d like it to be. Yet, we still have so very far to go to create a more just society. The last few months have seen some heated discussions about privilege in both the autism community (that is, the community of non-Autistic parents and professionals with an interest in autism) and the Autistic community. I think one of the things that makes privilege such a hard topic to discuss with those who are, or would wish to be, our allies is that it continues to exist, even when we get the things we’re advocating for. In the best of all possible worlds we can create, we will still be expected to explain ourselves to others in ways that no neurotypical person would have to do. We will still frequently face assumptions and stereotypes that require us to work twice as hard for the same results.

Please read the rest on the original post, found here.

Something About Us

2011-11-01T18:45:00.001-07:00

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

I don't want to be cured of autism, thanks

2011-11-01T18:35:00.001-07:00

CurlyAutie has written "I don't want to be cured of autism, thanks" on The Guardian:

I am not a savant or genius. I'm no good at maths or science, so I don't meet the criteria of the special gifts that might be lost if prenatal testing enabled parents to terminate foetuses deemed likely to develop autism. But I find it disturbing that no one yet seems to have seen fit to seek the opinion of individuals on the autistic spectrum.

As someone on that spectrum, I strongly oppose any kind of "cure" for autism; I also oppose prenatal testing and the eugenic elimination of autistics, as well as any research that could lead to these outcomes.

The autistic rights movement, which is allied to the wider disability rights movement, believes that people on the autistic spectrum are disabled more by society than by their autism. Like many members of this movement, I consider autism to be a part of natural human variation that should be accepted and respected, as with any other human difference.

Sadly, autism is often portrayed as a tragedy for both individuals on the spectrum (who are often said to be "suffering" from autism) and also their families. Interestingly, the organisations and individuals who disseminate and promote this image tend to be celebrity-seeking professionals who are seeking a lucrative "cure" for autism, or families who due to inadequate support and access provision see autism as the enemy, the cause of all their problems and something that should be minimised or eliminated.

Far more time and attention is given to parent-led organisations (in particular the National Autistic Society) and very little to user-led groups. The autistic rights movement is almost completely ignored.

Professor Simon Baron-Cohen wrote in a recent article:

Caution is needed before scientists embrace prenatal testing so that we do not inadvertently repeat the history of eugenics or inadvertently 'cure' not just autism but the associated talents that are not in need of treatment.

So my autism should be "cured", but the bits that society thinks it can find a use for should be kept? I find this incredibly insulting. My autism is part of who I am. It is not something "extra" that can be taken away from me to suit the agenda of an intolerant society. My abilities, challenges and perception of the world all go hand in hand. If I were to be "cured" of my autism, the person that I am would cease to exist.

To be frank, it makes me quite angry that little has been done to address the challenges autistics face. The world can be a frightening, painful, distressing and confusing place if you are autistic. There are, however, adaptations that can be made to the built environment, to ways of communicating and to society's attitudes that can go quite some way to relieving these challenges.

Despite the Disability Discrimination Act, little has been done to help make society more accessible for autistics. Legislation is mainly aimed at people with mobility impairments and those who are visually impaired or hard of hearing. When it comes to the autistic spectrum, the DDA is only of very limited use.

There are many things that can and should be done: they include changes to legislation to ensure that buildings are "autism friendly" such as a legal requirement for low arousal design, changes to noise legislation to reduce the sensory overload that is often experienced by autistics, especially those with hypersensitive hearing. Less visual clutter, better anti-discrimination laws and a legal right to assistive technology and communication devices would also help us.

The government has done little to improve access for autistics, or to change negative attitudes towards us. Instead, officials, professionals and parents alike are ready to consider eliminating us from existence.

What kind of a message does this send? Conform to neuro-typicality or we will eugenically wipe you out?

Autistics have not been listened to or given a proper chance to be accepted, understood and to thrive. Let's face it, it's much easier (and probably cheaper) to get rid of us than to support, help and (dare I say it) embrace us. So I think it imperative that individuals on the autistic spectrum are involved at all levels in the debate on pre-natal testing.
This should include people at various points on the spectrum, from "high functioning" to so-called "low functioning" autistics such as Amanda Baggs, who also supports the autistic rights movement.
In his excellent and moving essay Don't Mourn for Us, Jim Sinclair writes:

When parents say, 'I wish my child did not have autism', what they're really saying is, 'I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead'.

This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.

Rather than pursuing a "cure", or subjecting autistics to "therapies" whose goal is to make them appear and act as neuro-typical as possible, the government professionals and parents should devote time, effort and funds towards supporting autistic individuals in developing strategies to manage the difficulties they face, to improve their skills and to make progress and fulfil their true potential.

It is also important to work towards curing the sometimes-distressing co-morbidities of autistic spectrum differences, such as intestinal disorders and epilepsy.

Most of all, society's attitude towards autism needs to change. Our communication style and any non-harmful autistic behaviours should be respected and accommodated. The physical environment should be adapted to be more accessible in order to allow us realistic opportunities for inclusion, and to enable us to be as independent as we can.
Listen to us. Get to know us. Respect us. Include us. Don't put all the onus on us to fit in to your world – meet us half way. And most of all, don't eliminate us just because we're different.

25 Things I Know as an Autistic Person

2011-11-01T16:16:00.001-07:00

I'm reposting my old post from last year, 25 Things I Know as an Autistic Person from NeuroTribes. I will be posting my entry for this year later tonight.

25 Things I Know as an Autistic Person
by Corina Becker

1. I know that when I step outside my door each day, I enter a world that doesn’t understand me. To me the world is a wondrous, confusing place that I must work hard to navigate. I often wonder how everyone else can stand to handle existence.

2. I know that if people really want to understand Autism, they should be listening to Autistic people. We are the experts of Autistic experience. Ignoring us won’t make us go away.

3. I know that I do not suffer from Autism. I suffer from a lack of understanding and support.

4. I know that being “high functioning” does not mean not being disabled. It means that my disabilities are invisible.

5. I know that having a disability does not mean inability.

6. I know that Autism isn’t what you think. I dare you to think differently.

7. I know that after the whirlwind of childhood, and the emotional minefield of adolescence, I emerged as an adult — still as Autistic as before, and still an adult, with all that entails.

8. I know that what is normal for me is not always normal for you. I know better than to act upon the assumption that “normal” is the same for everyone.

9. I know that if you meet one Autistic person, you’ve met one Autistic person. The experiences, difficulties, strengths, personality and characteristics of one Autistic person does not reflect upon all of them.

10. I know that there’s a difference between not being able to communicate and not having anything to say.

11. I know that the world is an intense place. It screeches and screams, burns, freezes, and bursts into brilliance. It’s a place where words are too small to express the explosion of emotions flowing out of me — a place where words have yet to be invented to express a fraction of the howling fury of frustration and panic, the aching heartbreak, the stabs of betrayal and embarrassment, the abyss of despair and confusion, the weightless ecstasy of joy, the soaring heights of pure wonder, and the warm embrace of security that I feel.

12. I know there are times when people just don’t make sense, but I try my hardest to understand, even if I’m not very successful. I know that even when I can understand, it doesn’t mean that I know what to do.

13. I know that what’s called a lack of social skills for me — and requires me to undergo therapy when I mess up — is considered being rude for everyone else.

14. I know that lashing out isn’t the right way to handle things, but some days it’s the only way to deal with the thunder in myself. Sometimes it’s only my rage that lets me focus on what needs to be done.

15. I know that no amount of time is enough to fully fade the most intense memories; they stay just as sharp, crisp and clear as the day they happened.

16. I know sometimes the only other people who understand are those like me. But just because we’re similar doesn’t mean we’ll always get along.

17. I know that humans aren’t perfect. That doesn’t mean we shouldn’t try our best, but we should realize that we all have our limitations and we need to put things into perspective. A mistake isn’t the end of the world.

18. I know that sometimes you need to let yourself fall apart so you can pick yourself up again and carry on. Nothing lasts forever — the bad or the good.

19. I know that one smile can go a long way.

20. I know that there’s no force in the universe that can make me give up my interests, my “obsessions” and perseverations. These are my strengths, the passions I breathe through my being. I will not let them go without a fight.

21. I know the deep, dark fear of being alone, the stabbing pain of thoughtless words, and the empowering strength of friends.

22. I know you can have an excellent conversation without saying a single word.

23. I know that best friends are those who stay with you through all sorts of pain and struggle, who you would do everything you can to help without being asked.

24. I know that things don’t have to make sense when you’re having fun.

25. I know that diversity leads to the development, invention and creation of new ideas. Differences in thinking should not be shunned but celebrated and embraced. When we all work together to support one another, we can make a huge difference in the world.

Autistic Speaking Day IRC

2011-11-01T14:57:00.001-07:00

We've gotten permission from the GimpGirl Community to use their IRC channel and SecondLife relay to have a chat this evening!!

If you're on Second Life, follow this link (will open SL). We're in the park, and "Kina Amaterasu" will be near a campfire.

If you use IRC, the channel is #gimpgirl on the IRC network quickfox (irc.quickfox.net)

If you don't use IRC or SecondLife, follow this link to the chatroom relay on the GimpGirl site.

See you there!

The Autistic Freelancer

2011-11-01T14:20:00.001-07:00

Lori Berkowitz on being an Autistic Freelancer on LoriB.me:

I have been running my freelance web development business for over 15 years, the last 8 of which have actually involved a business license, paying taxes, and making money. Each year, I do a little better than the last.

Running a business can be challenging to everyone, and as with most things, can provide extra challenges for autistic people. Also, as with most things, we may have skills and abilities that give us a greater chance of succeeding despite the extra challenges.

In honor of Autistics Speaking Day 2011, I will write about my personal experience of running a business with these challenges and benefits. I have been very lucky and have had a lot of help along the way and would be very happy if I could help someone else looking to follow a similar path.

First, a few words about luck:
I do not have the business skills to run my own business. Before Karen was my billing manager, I often forgot to bill people and could not keep track who had paid even though I use software to keep track of such things. Software is useless if you forget to supply the needed data. Every month, Karen makes sure that clients are billed and follows up when someone has not paid. Needless to say, this has had a huge impact on the success of my business!

I have also been lucky to have a community of web designers and developers that send work in my direction. Most of this community is in the San Francisco Bay Area and I miss them a lot. I have not yet met that community in Baltimore, but I have met some really great developers at local PHP and WordPress meetups. I have been especially lucky to meet one woman who has welcomed me to Baltimore with open arms, sent great jobs my way, and shares her office space with me!

For the most part, when I work with other internet professionals (designers, developers, consultants, marketing people, copywriters, etc.), I have much less client contact than I do when I am working directly for a client. If I had my way, I would have a partner who takes care of the business and non-technical client management side of things all the time.

Challenge/Benefit #1 – Communication
When I was a new freelancer, I did not yet know about the client phenomenon known as “one more thing”. ”One more thing” is when a client thinks a task is very simple, when in fact it may take several hours or days to complete. “Can you just [insert complicated timely job here]?”. I am often expected to do this for free, because it is part of the website that I am building for them. No, I can not just do that. It will add 3 days to the project time and cost $1500.

It is a skill to communicate to clients what is involved in creating the things they are asking for. In most cases, it is best not to be too technical because most people do not understand the jargon of web development. Why should they? By attempting to simplify things into terms that a client can understand and relate to, the amount of time and work necessary to complete a project can seem like it would be much less than it actually is.

I like to have honest relationships with my clients. I do not generally ‘read between the lines’ and I never speak between them. I am autistic. My communication skills are limited, yet for the most part, my clients seem to like and respect me a great deal. Some will become frustrated with me at some point or other due to a communication (or lack of communication) issue, but all have appreciated my honesty, attention to detail, and dedication to giving them the best site possible within their budget.

Challenge #2 – Organization
Every morning, I look at my todo list, get overwhelmed, and start my work day . The list is always long. I use software to prioritize tasks and to view them in very focused ways. Otherwise, I would not have any idea what to do first. If I have to think, I am doomed to spend hours in a state of confusion while rapidly alternating between hundreds of things for 30-60 seconds each. Very bad for productivity to say the least.

Challenge #3, Benefit #2 – Hyperfocus
When I am not serially uni-tasking at rapid speeds, I can usually be found doing the exact opposite, hyper-focusing on one thing for hours at a time, usually code. In general, this serves me well, but sometimes there is a need to come out of the code and attend to something else. I find this very hard to do at times, to the point where I can not give my full focus and attention to something because I can not let go of the code. The amount of confusion that occurs while trying to shift can be very painful and disorienting to me and very annoying and frustrating to a person trying to pull me back.

Hyperfocus can also be a benefit when learning new skills. I work in an industry where there is a need to be constantly learning new technologies and keeping up with older ones. The ability to become so engrossed in something that it becomes all-consuming makes it much easier to keep up.

Benefit #3 – Helping Each Other
At some point, I would like to work with an autistic intern/apprentice and teach them the skills that I have learned in a way that they can understand and in an environment that they can be comfortable in. I have a similar wish to teach karate to autistic people someday.

In the past 5 years, the autistic community on the internet has grown exponentially and brought thousands of people together. This has expanded to “real life” communities, government action, education, and many other areas, but it is still not enough. It is our voices that will lead the way to a better future, whether those voices be vocal or assisted by a device or person. It is our voices that will allow us to reach out to one another, and help each other, and share our unique views of the world with the people who’s world is sometimes a mystery to us. It is our voices that will tell the world that we have voices.

A. Speaks for Autistics Speaking Day

2011-11-01T14:17:00.001-07:00

Devon Alley has her daughter respond to questions on A. Speaks for Autistics Speaking Day:

From @Joanmarie: What should we/society be doing differently?

Good question for sure. Pretty much everyone should know this: America gets to make some books & more movies about autistic people. Because they’re like the stars (or children) of the Leos. And I should know, they will not be dissed.

From @deograine: What do you most wish non-autistic people could understand about autism?

They can make some more books. If sucessful, they can find how a person’s autism could be wired differently. Let’s all hope they don’t make a cure for autism! They’re special they way they ARE.

From Mom: What is your personal definition of autism?

Well, here’s my defo: Autism - an extremaly rare contition that wires the brain differently. In high-funtioning, you could speak. In just regular, well, might I say silent?

Please read the rest on the original post.

My Life with Aspergers

2011-11-01T14:14:00.001-07:00

Jenn McGrath has written My Life with Aspergers on Facebook:

I do speeches on living with Aspergers from time to time and I want to get into it again. So here is my life story on living with Aspergers. Please pass this on.

Growing up was like a roller coaster ride for me, full of many ups and downs which were very difficult for me to understand. I had struggles not only in my childhood but in my teen years as well. I had a very difficult time in both elementary and high school. I was struggling to be accepted and fit in with other kids but all I got was bullied and abused both mentally and emotionally. I never had a chance to go school dances or the prom. I never went to my graduation because of all the pain that I have endured. I moved from Burlington to Hamilton in 1993 to start my life over again and move into a place called Woodview Manor which was recommend the person who saved my life. A man named Dr. Peter Szatmari and also a man named Rick Ludkin. I was scared at first because my self-esteem was low and my attitude was negative. I was taught how to be strong and live independently like other people. I started to make new friends and gain some new confidence. I now go to the YWCA for my workouts. I do yoga three times a week to learn how to calm the mind and deal with stresses in my life. I also spin cycle, lift weights and volunteer there at least a few times a month. I met some wonderful instructors and met some nice people that workout there. I'm currently working as a receptionist at The Lawson Ministries Autism Centre. It's a great job but it has some struggles and challenges in which I learn every single day. The people there are really understanding of me and they help me out as much as they can. I live my life like everybody else. I go to work, I live in my own apartment, I cook, I bake, I clean, I run errands, I go to concerts and other events, I go to the movies and I travel to places like Chicago, Las Vegas, Toronto which is my favorite city to go to and shopping in Buffalo and Niagara Falls, N.Y. My favorite band is Rush. I find that this band are the most respectable group of men not only with talent but they are like family. Brothers to be saying at least. I feel like my life is like Neil Peart who lost his wife and daughter within 10 months of each other and he went on this journey on his motorcycle to start his healing. I feel like I have Neil Peart's Personality except that I don't play the drums but I wouldn't mind trying. I find that Rush makes me grow stronger and the lyrics keep me going even if I'm having a bad day. I have all their albums and DVD's, plus some pictures and three of Neil's books. I even saw them in concert 5 times and I even went to RushCon. I wished I went to more Rush concerts outside of where I live but it gets pretty expensive. I want to go to more conferences and more places because I want to learn. I want to be involved, and mostly I want to be accepted. Anybody with aspergers, autism, any other type of disability even the "normal" people should all be accepted, join together and welcomed into the world with open arms and not isolated from the universe. I accept all my friends. We stick together like Rush. I have Aspergers and I was born that way. If there was a cure for autism, I wouldn't want it because that wouldn't be real. We are all different and we should be happy with the way we were born. Let us all join hands and raise our hearts to Autism Awareness.

SFARI Austics Speak

2011-11-01T14:09:00.001-07:00

Virginia Hughes at SFARI has posted in the News and Opinion blogs "Autistics Speak"

Today marks the second annual Autistics Speaking Day, which I think should be broadcast not only to the general public, but to autism researchers. Nearly every scientific paper about autism makes a passing reference to the heterogeneity of the disorder. That's beautifully illustrated in the dozens of posts and Tweets written for today's event by those who, despite their communication struggles, speak up.

The rest of the post can be found here.

Ember Nickel Autistics Speaking Day

2011-11-01T14:06:00.001-07:00

Ember Nickel has written a poem "Autistics Speaking Day" on Lipogram! Scorecard!

It’d be nice to keep
Silence. To read the words between the faces;
Words flashing by at their own paces
Not changing blurs, forgotten imagery
Or the fall and rise
Of tolerated lies.

To hear and to prevent
Being taken of context,
Crossing invisible lines,
Driving through invisible signs.

And I keep silence up against the hail
Of flashing buzzwords, fads to deride.
Not combative, not even filled with pride
For something nobody can choose
For something nobody can lose.
Don’t break but bend at the derision.

For I am not myopic vision.
Maybe glasses make me look wise
But I’m myself with different eyes.
And we must face obvious facts;
I’m still myself with less ear wax.
Or if my hair is not as mangled–
But some things can’t be disentangled.

And I suppose it would be nice
To be who I assume I was,
The flippant teenager, because
The flippant teenagers can take
The news of their people’s mistake.
Your race. Your creed. Your land. Your fault
Each pollution and each assault.
And shrug it off, go on their way
And live and hear the same next day
This barrage, current and historical,
Unforgiving and categorical
And do not crack. And do not scream.
And don’t melt down. Maybe not dream–
–Well, everything comes at a price.

I cannot whistle, cannot wink.
My muscles aren’t malformed, I think,
But how to translate, mind to head?
I cannot hear what isn’t said.

I think in abstracts, words and chords and math.
If I were truly the anti-empath
That’d be easier. But instead I care
At least about whether things are fair.
At least when I become attached to text
Whose absence makes me rather vexed.
The voice in the book, or behind the other screen.
The stats for that one pitcher or one batter.
They’re gone and I don’t know why it would matter
Except in the fact that I almost mourn
For the unreal, for what was never born.

So till I learn silence
I sing; no anthems these
But quiet, half-remembered melodies.
The words are new. The words are parodies.
Nothing too modern, fit in a taut line;
If nothing else, at least they’re mine.

Q and A about autism and art

2011-11-01T14:00:00.000-07:00

another from fryfan20, this one called "Q and A about autism and art" on tumblr

Q: how do feel about things like this: brainpickings.org/index.php/2011… Do you think labelling art as ‘autism-related art’ does help the artist, and does provide a helpful context for the viewer? Or does it create a special ‘corner’ for artists w/ autism that, in fact, reduces and limits them to this category? As I know from your writing, it’s not all about autism all the time, and you are not limiting yourself to this topic.

A: these things never feel right because there is no reason why people can’t enjoy the art without the pity part and they don’t need any pity. people who go to those things often have no right idea about what autism is and the general feeling seems to be “aww how good that they can do art too” witch is nonsense, of course we can do art and some of us are very good. those who are good, you will also find good without knowing that they have autism. positive discrimination is still discrimination, we don’t need to be set apart from the rest to impress people. if I ever get a book published then I would never let anyone describe me as a autistic writer, because it will influence people’s opinions about the work and I am worth more then pity and I don’t want to wonder if people really for what it is.

trust yourself

2011-11-01T13:55:00.000-07:00

Britt Kravets wrote "trust yourself" on a bird in the hand:

A major theme in my life has been learning to trust myself. When you’re autistic this can be a hard thing to do. I should start by giving you some background information. I have a very mild form of Asperger syndrome. I was diagnosed two years ago, when I was 26, so I’ve spent most of my life without a diagnosis.

I’ve spent most of my life feeling like something was off, but I didn’t know what it was. This can lead to an incredible sense of insecurity, especially for a young person. I knew that sometimes I did things that other people didn’t like or understand. Once I realized that I was not always acceptable, I started to feel that I couldn’t trust my own judgement. I thought, “other people must know more about these things, so If someone tells me I’m not acting appropriately I should believe them.” I went along in life with this mistaken belief for a long time and it hurt me.

In my adult life I’ve worried about relationships, walked on eggshells trying not to upset people, all the while ignoring my own feelings. When someone else got upset with me I automatically assumed it was because I was wrong and was bad at relationships.
Occasionally this is the truth. We all make mistakes and hurt people’s feelings sometimes. But I was giving away my right to my own emotions. As a result I had low self-esteem, anxiety, and a lingering depression. In fact, it was making myself miserable which in turn had a negative effect on my relationships. It was a never-ending cycle.

Luckily, wisdom comes with time and reflection. I am realizing that I am allowed to feel how I feel. In fact, I should listen to those feelings because most of the time they’re telling me something very important. I have to make a promise to myself that I won’t let anybody else tell me that my feelings aren’t valid. And I have to allow myself to feel these emotions without fear that it will upset someone or make other people uncomfortable. I’m not saying that I should act upon every emotion I have; none of us should do that. But I have to listen to myself and use my own judgement.

This sense of insecurity can happen with any young person, but we must be especially careful with young people with Asperger syndrome or high-functioning autism. The truth is there are certain things that we have to learn in order to interact with other people. Chances are we won’t act in the “socially acceptable” way all the time. We can learn social skills. But, it is imperative that this learning process includes temperance. We have to learn that when something doesn’t feel right it’s okay to say so. I had to learn that other people do not know what is best for me. But that got blurred by my intense desire to get other people to like me and my belief that they knew more than I did.

So, teach us how to start a conversation politely or how to make proper eye contact. But also teach us that we are unique individuals who have as much right as anybody else to express how we feel. It is important to accept constructive feedback from others, but we must not let other people decide how we should feel or what is in our best interest. We must have the confidence in ourselves to make these decisions in order to be healthy, happy people. And, we must stand up for those decisions, even when other people don’t understand them.

You are the only person who knows what is right for you.

Trust yourself.

Unspoken

2011-11-01T13:52:00.000-07:00

Bard has written "Unspoken" on Prism*Song (be sure to check out the original for all the awesome artwork!)

Language is so incredibly complex. It's a true testament to the highly social society that humanity is. Yet we tend to be so narrow-sided when it comes to language and what constitutes as such. We put things in boxes, and over analyze and structure things that don't have a structure.

This is a continuation of old essay called "speaking in Drakk", of course this is playing off the same metaphor of speaking in a complex language that is hard to understand like the fantastic language of drakk. Not all things are spoken, not all things are easily perceived. Not all things are clearly read. Which is why I am writing this, like drakk, the expression of love is not always obvious. Humans don't read gentle grinding of horns or foreheads like a kiss. Nor do they understand why drakkhani would rub their tails against another, or why eye contact is an intimate act. This is flies over their heads, but for a drakkhani it's obvious what those gestures mean. For autists, it's also obvious what certain gestures mean.

Each autists expresses love in unique fashions. Individual to the person expression affection. Some will say "I love you" others will show it and like in drakk, sometimes it's hard to understand it.

I use affection in the same way a dog might roll over on it's back. It's not out of love sometimes it's out of fear. I am afraid of being abandoned or yelled at, so I shower my dad with kisses or hugs and "I love yous" it's not out of tenderness but submission. I just want to make sure, dad isn't mad at me. It's childish, but it's an act that I can't shake. With my boyfriend, I grind my head against his, I squeeze his hand. I growl softly. Most of my more genuine acts are unusual from the traditional displays of affection. Yes I kiss, but french kissing isn't a favorite of mine, I like rubbing against him and being tickled. Those to me are the most intimate of acts next to making love. I also know when he says I love you, when leans on me. When he kisses the top of my head. It gets to the point when he kisses my cheek I say. "I love you too."

I just know and autistic kids know to and despite not showing it in the typical fashion. They do show genuine love. Like drakk, it's hard to read the first time around.

Autistics Speaking Day, 2011

2011-11-01T13:48:00.000-07:00

Julia Bascom has posted "Autistics Speaking Day, 2011" on Just Stimming...

Today is Autistics Speaking Day. It’s an annual holiday of the Autistic community that started last year in response to some ill-advised advocacy attempts, and I hope it continues until someday every day is Autistics speaking day. It’s one day of the year where social media and the blogosphere are reserved for the Autistic community to speak out in a concentrated effort.

Today is Autistics Speaking Day.

Today I am silent.

Part of being autistic is that things do not always go according to plan. Part of being autistic is that I can’t always synch up with everyone else. Part of being autistic is that I can’t, in fact, deliver meaningful content and communication whenever I’d like–or, really, whenever other people want me to. Part of being autistic is that I can go months without anything much to say at all, really.

Part of being Autistic is knowing that that’s okay.

Most of my writing and thinking this past month has centered on the things I’m interested in–Glee, Phineas and Ferb, Community. Mostly Glee. I’ve been doing other stuff, sure, but much of the thinking is still pre-verbal. I have thoughts I can feel stitching themselves together and lining up about college and developmental disabilities, about quite hands, about the power and terror of words like “stop” and “I need help” and “no,” about abuse, about when autistic people are listened to, and about autistic vs Autistic….but they aren’t ready yet. They aren’t even words. Most of my posts here have taken months of patience, of silence, of frustration and catharsis and self-injury and all kinds of “behaviors” and meltdowns and unpleasantness, before I could sit down and everything came together. I’m in that transitional period again now, and it’s quite uncomfortable much of the time.

I’ll wait. I’ll be silent. I’m Autistic–I’m allowed.

Today is Autistics Speaking Day. Some of us can’t speak today.

I hope you’ll still listen, when we can.

autism and education

2011-11-01T13:41:00.000-07:00

fryfan20 has another post, on tumblr, called "autism and education":

@ad_astra30 asked me: Which aspects of your education were good for you/helped you to develop your potential, and what would you do differently when it comes to education for kids w/ autism. Especially when it comes to higher education. What would you have needed/wanted to make higher education more accessible for you?

I have been quite lucky with most of my education, I have been in special education for most of my life, witch was good for me because I would have had a lot more problems in the overcrowded schools. what really helped me was that my tutors really made time for me when I had problems and believed in me even when I didn’t, they gave me time and space to work everything out. when I tried out for higher education my luck ran out, I dropped out after 5 very long weeks. the main problem was that there was soo much to deal with from day one, new class, new people, other system, the classes where with a lot more people where from some where talking during class (I am very easy distracted by sound) and the speed in witch you have to learn things was just too great, especially cause I didn’t learn anything with all the other stuff going on.in an attempt to stay in school, I told my tutor about my autism, who sent me to the dean. I had a small talk to the dean and found out later that he had arranged with my tutor it was a good idea that me and my tutor talked every week, without asking me. with that also came that my tutor thought it was a good idea to trick me into telling the whole class about my autism witch gave me even more stress. he thought I was great, an example for all autistics that we can make it (no pressure ? ). I also tried to talk to the student psychologist as a last try to stay in school but she didn’t know anything about autism and after a half session was it clear that it would be no help.I stopped because my first test where coming up and I didn’t learn a single thing, I decided to keep the honour to myself.
what I think they could have done to help me stay in school is: make sure that there is someone that knows anything about autism in the school. a buddy-system with older autistic people in the school can be good, they know what the problems are and can support the new starting student. give the new student some time to adjust to the new environment, maybe a longer study-time can relieve some of the pressure. a be quiet rule in classes doesn’t seem very strange to me, chatty students can do so outside the classroom. in this school there was a rule that bugged me, if you didn’t have made enough personal growth in the first two years then you can be sent off school no matter how good you do in classes. for me that meant that I could be sent off because who I am after working very hard for two years and that would be heart breaking of course. if a student tells a tutor about any condition then this should be treated as confidential information that can’t be told without their consent.
to make a long post not any longer, this is what I think of it and based on my experiences.

Speak for Yourself: a Call to Action

2011-11-01T13:39:00.000-07:00

(Trigger Warning for Institutional Abuse, mentioning derogatory language [R-word])

R. Larkin Taylor-Parker has written Speak for Yourself: a Call to Action on tumblr:

Autism discourse is dominated by despair. Children and teens are bullied. Adults are unemployed. Bloggers insult political opponents with our label. Schools begrudge us an education. Many who claim to help us shout over us. We are called changelings, inferior replacements for children stolen from our parents. The society that consigns us to its fringes in youth welcomes us, during working hours, if we grow up and gain skills it can exploit. If we are unable to have a conventional career without supports, it calls us useless, accuses us of draining its prolific resources, and throws us away. Those of us who fought through our own deficits, low expectations, parents who misunderstood us, teachers who considered us ineducable, and sometimes violence to reach the professions carry scars nothing can erase. We are the lucky ones.

The less-fortunate are dead, languishing in institutions, living with parents into middle age. We have escaped their suffering by means ranging from our own cleverness to mother tigers. Stripped of those means, we would suffer as they do. If their circumstances are unacceptable for you, they are unacceptable for everyone. They are a sign of change to make. Our rage festering on the Internet would make an anthology, but it amounts to a few things:

Please read the rest on the original post.

What I Cannot Tell You

2011-11-01T13:32:00.000-07:00

Landon Bryce on thAutcast has requested to post the following:

From Niamh:

Please, please wait for me to find the words to say what's on my mind! I can't translate my thoughts into words as fast or easily as you can, and sometimes I just can't retrieve the right words at all. If only I could wire up a projector to my brain and stick it to my forehead so I could show you my thoughts rather than tell you. If you put me under pressure to speak quickly, I'l probably blurt out the wrong word entirely and say something bad that I didn't mean to say at all. I'm verbal, but speech does not come easily!

If only you knew that I can better listen to what you say if I don't look at you. It's not that I don't like you, or that I don't like looking at you, or that I'm not interested - I AM interested and want to hear every word you say, and looking at you only doubles the work my brain has to do. I can only look at you OR listen to you, and forcing myself to do both brings on far too much stress.

Don't get offended just because I can't cope with noisy pubs and clubs and house parties. I would go to them if I could, and occasionally I do, but I would much prefer to meet you in a quiet café or go for a walk with you. I want to see how you are, hear your stories, and enjoy your company. I care about you and want to spend quality time with you, but I can't do that in a place where I can't hear you, can't understand the conversation because too many people are involved, and am too busy trying to stop myself from feeling overwhelmed to be able to relax and enjoy myself.

Stop making such a big deal out of me rocking back and forth, or spinning around in an office chair, or fidgeting with my arms and legs and face all the time. It's not "crazy". It's not harmful. It's not something to be alarmed by. It's just movement. It's movement that I crave constantly. My brain wants to correct its sensual perception of the world around me. It asks my body these questions over and over: Where is my face? Where are my arms and legs? Where is my torso? How big is my torso? How close am I to the objects around me? What's touching my neck? What kind of fabric is wrapped around me? How firmly is my friend hugging me? And the only way my brain knows to find the answers is to tell my body to rock back and forth (Here's where my torso is!), thump myself on the chest, upper arms, and other parts of my body (That's how big my body is!), pull at my face, rub it or scratch it (Found my face!), tug at my clothes (Ah, it's cotton!)... I could go on. My brain keeps forgetting where my body is in relation to its surroundings, and keeps forgetting what's touching me when it's touching me too lightly to perceive it correctly. I self-stimulate even more when I'm in a noisy environment or an unfamiliar one, because that gives me even more sensory information to try to understand on top of all the rest.

Please give me a break if I can't think of anything to say or ask. If there's something you want me to ask about, the likelihood is that I'm not going to pick up on that even if you hint about it. Just say it. I care, and want to hear about what's important to you, but I'm not good at giving you cues to tell me about it, or at picking up on your cues to direct me towards asking you. Just because I don't understand how to do much besides sharing my own thoughts does not mean that I'm self-absorbed and uninterested.

If you need me to do something, spell it out for me. Don't be vague. Don't act all surprised and disappointed in me because I couldn't understand the task, when you gave me no instructions beyond telling me to do it.

Don't try to turn me into you. It's disrespectful and selfish to try control somebody's lifestyle just because YOU aren't able to accept them for who they are. If I enjoy playing music for 9 hours a day, let me do it. I'll be in a far better mood if you do. If I like wearing loose, comfortable clothing instead of tight, fitted feminine outfits, let me, because I'll be completely distracted from everything and everyone around me if I have to wear what you like to wear. Don't think that forcing me to go to house parties will make me magically able to deal with them.

Don't tell me that I'm not autistic when I have been diagnosed officially by a professional with 20 years of experience in his line of work. Stop imposing your ignorance on me by trying to stop me from believing in my diagnosis. Stop telling me I look "normal" and that I don't "look" autistic, because there is no autistic "look", and considering the continuing increase in autism spectrum diagnoses around the world I think autism is actually pretty "normal" these days.

Autism: An Interview With Myself (Autstics Speaking Day Special)

2011-11-01T13:04:00.000-07:00

Karin Mossberg has written Autism: An Interview With Myself (Autstics Speaking Day Special) on Beware the Aspie

What is Autism for you?
It's hard to say because there is no limits between what is Autism and what is me. It's a part of who I am but it's impossible to decide what part it is and how much difference it makes. All I know is that I wouldn't be the same person without it. Just like I wouldn't be the same person if I deleted some of my memories, persons from my past of my own character flaws. They all shaped me and made me who I am today.
In IRL social situations, do you want someone to tell people you are Autistic?
No, I did want that before but not anymore. It's not like I can't represent myself in a conversation. And if a social situation starts off like that it's easy that the new people I meet ignore me from the situation and just talk to my company because I'm "different". And that is totally unbearable! Instead, I want to speak for myself and make a good impression and if I get a question where talking about my Autism is appropriate, I do. I want people to see me as Karin, nothing else. But I won't keep my Autism a secret, that would be unhealthy. I just don't make it a 'thing'.
You are very positive about your Autism but is there anything you don't like about it?
Of course there is! Everybody has things in themselves that they don't like, me included. I have a whole load of things in myself I can start obsess about. One thing that's really hard for me right now is that I can kind of "see" myself from the outside and think "What the hell am I doing? I know better than this". On later years, I have realized that I often get the feeling I'm watching myself from outside, with distance from the situation. Then it's very easy to start criticizing yourself and this can be really tough with time. Especially if you (like me) have pretty bad impulse control. But I try to accept this problem in myself, if I changed it I wouldn't be me anymore. I just wish I had better methods to cope.
You are a very variated person, have you ever thought about that you might have multiple-personality disorder?
Well, I have heard that I'm like "many different people at the same time" but I don't think the cause is a personality disorder. I am just generally very interested in the world around me and try to have an open taste and not lock myself into a certain "style". Even trough I can be very, very different in different situations, I'm always me. I just really like exploring new things and finding new ways to express myself.
In your past, you have been very much against the "fitting in" concept. How do you feel about that today?

I think it's all about finding places and people who you actually can fit in with. Nobody fits in everywhere! Some situations are better for an individual than others. When I walk around on the streets in the town I live in I feel like a complete freak. I think about my Autism all the time because my town can't stop reminding me. But I was to a town recently where I wasn't a freak at all. I could walk around, sit in the park, go shopping for clothes, eat at restuarants and all those things I ususally don't do, without feeling like a freak for one single second. I really did "fit in". I won't move there because then I'll move away from some really good friends and activities I have here but I'll make it a tradition to go there when I want to do all those things. When I'm at friends I might want to talk about that too. I have many friends, some of them are very close and some of them are more networking contacts. I share everything with my closest friends. I can laugh my ass off, cry oceans, get severe nervous breakdowns, bitch about some cyberbully, discuss deep thoughts, discuss music or just plainly exchange some nonsense with them. They will still love me after all this. I trust them 100% and that can be completely magical. But when I talk to my network contacts I of course refrain from saying things that's too personal or might cause offense. I want to make a good impression and be helpful. I hold back on things that's not appropiate to discuss. But I don't think that means I'm less myself or that I sacrifice my individuality just to have success. I just don't do weird things for the sake of doing it. How many people have you heard talking about their menstrual pains at a job interview? Not many I guess. They held that back to make a good impression. That's what I do too. Sometimes I fit in naturally, sometimes I have to work for it.

I can imagine that it must be very hard to have people telling you how you work all the time. How do you cope with it?
Of course it's hard and I think that the only thing I can do is speaking up for myself. Letting my voice be heard. Nobody knows how I work better than I do (except possibly one of my closest friends) and it's extremely painful to hear so-called experts saying that I lack empathy or that I'm uncreative because I'm really trying my best to be both empathic and creative. And it's even harder to know that whatever I say and however I say it, they will always see me as inferior. I can come there in my powersuit and tell them off like a real powerwoman, but it won't work. Because I'm still just an "Autistic kid having a temper tantrum". Instead, I have to write on here and be informative and hope to change someone's view on me or Autistics in general. And I'm really grateful that I have had the opportunity to reach out to people and change things for them. That really warms my heart.
*Please note that this is NOT an attack to the people working with Autistic children/adults. I know that some of you are completely wonderful. I was just talking about those who are not.
When you started working with "Beware The Aspie" you wrote very differently compared to how you do today. What do you think casued that?
I have evolved so, extremely much the last years. I have gotten out of a very hurtful situation and recovered from a severe mental illness, I have met new people that changed my whole view at the world and I learned more about the sibjects I write about. All these things helped me to be less biased in how I write. Meeting Lottie was a big change. I have been raised hearing that right-side politicians and police officers are evil and dangerous. I had to fight my taught prejudice when I met her. My fear for police officers turned into strong fascination (I think I have always been fascinated really, I just never gave any place for those emoions) and my hate for right siders turned into cautious acceptance. I learned that just because people are from a different group it doesn't mean they are bad for me. We are all individuals and I love my Lottie dearly. I also met a very, very special friend. She also taught me SOOO MANY THINGS. But those are more personal so I won't list them. But one thing she made me realize I can write about here is that IRL neurotypicals that listen to popular music can be the most interesting, funny, supportive and inspiring people in the world!
Last question, if you could describe yourself in one word (you can't say Karin), what would it be?
Everything

Being Proud, Being Present: Autistics Speaking Day

2011-11-01T13:02:00.000-07:00

Shannon Rosa has written Being Proud, Being Present: Autistics Speaking Day on www.squidalicious.com:

Today is Autistics Speaking Day. I hope you're participating -- if so, submit your post to the official site! -- or at least listening. Really listening.

TPGA is participating with gusto: Carol Greenburg is tweeting fabulously via @thinkingautism as -CG, saying things about being autistic and parenting a child with autism that you absolutely need to read, and Liz Ditz is doing her usual fantastic post curation as -LD on @thinkingautism and also at our site, ThinkingAutismGuide.com.

Leo's not much for opining verbally -- but I want you to know that he's here, he's not a boy who lets people ignore him, and I'm proud of him every time he does speak out and tell people what he wants.

Autistics Speaking Day- Reasons I support Neurodiversity

2011-11-01T12:52:00.000-07:00

(Trigger Warning: contains mentions of discrimination and mental illness)

Louise on The Cat's Aunt has written Autistics Speaking Day- Reasons I support Neurodiversity:

Neurodiversity, as a movement, isn't always taken seriously. I've heard everything from people calling it a joke to people calling it a cult. Many seem not to understand, completely mystified by why anyone would want to be 'proud' of a 'disease'. Others argue that it is all very well for people with Aspergers, ADHD, Tourettes and other so-called 'high-functioning' neurotypes to shout for acceptance rather than cure, but they have a child who can't speak, can't sleep, can't read and needs treatment. A lot of people just flat-out don't see it as a legitimate movement, or misunderstand horribly and think the whole point of ND is to take liberties and make neuroatypical people legally and socially untouchable.

I have a lot I wish I could say to these people. I have supported neurodiversity since I was thirteen years old.

I am a woman with mild Aspergers- mild to the point it took them around seven years of dithering to decide that I definitely had it. I can 'pass' reasonably well, and usually just come across as an eccentric NT. I wasn't bullied that badly at school, my family have never abused, discriminated against, or tried to cure me, I have had friends far more often than not and I have only been faced with institutional discrimination once, and that was a mild case. I am, technically speaking, one of the lucky ones- but after battling long periods of depression and very low self-esteem, I certainly don't feel lucky. Which begs the question... if I, one of the 'lucky' ones, can get hurt this badly, where does that leave people who had it worse than me?

I support neurodiversity for those people who had it worse and suffered horribly simply because they were different in a way other's couldn't understand; and I support neurodiversity for other like me, who got off likely in comparison and still had a rough ride.

I support neurodiversity because I am yet to meet a neuroatypical person who has not suffered from stereotyping, bullying, and discrimination at one stage or another, and I support neurodiversity because for many of these people, the discrimination has come from parents and teachers they should have been able to trust.

I support neurodiversity because the rate of mental illness amongst neuroatypical people, especially people on the autistic spectrum, is through the roof, and nobody seems to see it as an issue. Many professionals accept this as 'a natural part of autism', rather than looking for an external cause and trying to treat it, like they usually would with a neurotypical patient.

I support neurodiversity because I believe this high rate of mental illness is caused by the stress of trying to 'pass', and because the amount of pressure placed on people to pass is most likely damaging. Neuroatypical children are not taught to be themselves like neurotypical children are. They are taught to suppress themselves and be someone else, someone more likable, someone more sociable, someone less 'weird'. Neuroatypical children are taught, effectively, to be people pleasers, to place their self worth in how much other people like them, and in turn consider it a fault with themselves if someone does not like them. I support Neurodiversity because this is wrong.

I support neurodiversity because I believe there is space for a massive variety of people in society, and that including those who are different rather than trying to mould them into a prescribed 'norm' is the way forward.

I support neurodiversity because some of the treatments and medications given to neuroatypical children are unfair, have bad side effects, or are downright dangerous. Many children are harmed or denied a childhood by parents desperately trying to change them into something they're not.

I support neurodiversity because the ND movement challenges Autism Speaks, who contribute heavily to this by exploiting the fears of parents rather than offering them genuine help.

I support neurodiversity because neuroatypical people seldom get fair or accurate representations in the media. I know fictional Aspergers characters are virtually interchangeable, and in the media we are often described with patronising language such as 'weak', 'naive', and 'vulnerable'. To name some other examples, Dyslexia is often taken to extremes in fiction for the purposes of drama, Kanner's Autism is seldom depicted, and when it is, it's often in a plucky-heartstrings 'my tragic child' kind of storyline. Good luck finding a depiction of Tourettes that isn't a) focused exclusively on coprolalic tics and b) played for laughs. When the best you can hope for is for your neurotype to be featured in a supercrip storyline or article, or not be too stereotyped or infantilised, you know there's a problem.

I support neurodiversity because neuroatypical people are almost always shut out of decision-making that concerns them. If they get involved at all, it's to tell their story and then leave the important talks to the NTs. We seldom get the chance to suggest improvements or challenge the status quo, and when we do, we often find our input was unwelcome, far more so than if a parent or professor had said it. Even the UK's National Autistic Society, in most ways very good, is guilty of this.

I support Neurodiversity because the current system places 'looking normal' in front of the feelings, desires, personality and emotional wellbeing of the neuroatypical person.

I support neurodiversity because searching for cures takes away from searching for productive workarounds, alternative communication and learning methods, education, and support.

I support neurodiversity because so many neuroatypical children and adults have to battle and struggle when the vast majority of their peers do not.

I support neurodiversity because I care about equality and social justice in general. To me, being in favour of neurodiversity is as obvious a thing to do as being against racism.

And I will continue to support neurodiversity in the hope that with enough time and effort, eventually everything I've written in this post will simply go without saying.

Respect

2011-11-01T12:27:00.000-07:00

In her own words, Amy Sequenzia wrote this poem "as I wrote many others, to show that even autistic people who carry the label of “low functioning” can think independently, even if we need more help to make our voices heard. I am a free thinker and I will not be stopped by awkward looks of pity or by disrespect. I am more than my needs and I am slowly showing my real self. I hope you enjoy it."

Respect

Copyright 2011 by Amy Sequenzia

A moment of sanity in the conversation about respect
Ask me the question, listen to my answer
That’s respect

A moment of love
Look into my eyes

See my soul
A moment of connection

I am who I am and I hope to be respected
I am all my abilities, including my disabilities
I expect to be heard

What you see might not seem much
This is not my fault because
“Beauty is in the eyes of the beholder”

So, be daring, be special and try to see beyond the cover of my being
Wise thoughts lie beneath
Warm feelings waiting to be shared

My 10 year old Aspie tells it like it is!

2011-11-01T12:22:00.000-07:00

Sharon from Mama's Turn Now has posted "Autistics Speaking Day- My 10 year old Aspie tells it like it is!"

I was all prepared to blog about my horrible experience trying to get my boy to take his Albuterol inhaler puffs… oh the nightmare that was, but then I read Spectrummy Mummy’s post about how today is Autistics Speaking Day. So I thought, well my Aspie is home, let me ask him and give him the chance to well… SPEAK. To reach out to you all to offer his pearls of wisdom… which I often try to do every day here but some how I can never really capture. You really got to spend a day with my boy. He is amazing!
So I showed him the following info below which is an excerpt from a different blog about Autistics Speaking Day from The Thinking Person’s Guide to Autism. For those too lazy to click over there, here are the goals for the day:

Goals for Autistics Speaking Day

To raise not only autism awareness, but also acceptance
To battle negative stereotypes about autism
To by advocate for the inclusion of autistic people in the community
To offer a forum to broadcast the messages of autistic people and non-autistic allies to as many people as possible.

So I asked Jay, my 10 year old Aspie, to come in and I showed him the above. He scratched his head and looked at me with his big Hazel eyes and he said…

“Mom… I am not a trained monkey. You can’t get me to perform on command. I can’t just come up with your blog posts like that. Your hurting my head! “

And there you have it folks… I think his words are perfect for today! You see… my son is just like any other boy. He thinks, he loves, he laughs he cries… his head hurts when asked to perform and he is stressed out. Just like you and me.He may not take the same path you or I take to get from A to Z… but he gets there, in his own time, his own way. And not only does he get there… he arrives with about a million observations and facts about the things he saw along the way. That’s the thing… you see he REALLY SEES THINGS… and how sad that others can’t take the time to do the same for him. For if they gave just an extra glance, an extra second, a moment to really look at my boy, talk to him SEE HIM… well their life would never be the same! I know mine is not! As I said before… MY BOY IS AMAZING!

Happy Autistics Speaking Day!

2011-11-01T12:18:00.000-07:00

Stimey has written Happy Autistics Speaking Day! on her blog Stimeyland:

For my own post here, I remembered that it is not Stimey Speaking Day (that's every other stupid day here in Stimeyland), but rather Autistics Speaking Day. So I looked around this morning and managed to locate one of them in the backseat of the car on the way to school.

I took a few minutes and I told him about ASDay and about all the grown ups with autism whose brains work kinda like his do and how they are having a day all about letting people know what it is like to be them.

I asked him what he wants people to know about him. He said that he would want people to know that he likes Lego Robotics. Then he said, "I'm Jack and I am funny. I am also hilarious." (For the record, he totally is.)

Please read the rest of this post here.

Life Without A Label

2011-11-01T12:16:00.000-07:00

Maria Gaskin has written Life Without A Label on her tumblr:

30th January 2011- The day my life changed forever, the day I was handed this completely insincere piece of paper that said “Maria has a diagnosis of Aspergers”. The day of relief, upset, worry, happiness, sadness, confusion, knowledge, learning…I could go on?

I had known for at least 2 years that I had Aspergers Syndrome. People often ask me how I knew and my answer is always “I just did”.

I had spent the first 20 years of my life growing up knowing I was different. Feeling out of place, doing things in a very different way to my peers. I came to the conclusion that it was probably just the rest of the world that was weird, and I was actually relatively normal. Oh the things we trick ourselves to believe….

I’d like to say my journey without a diagnosis was an easy one, but I’m not a liar. It was hard. Really really hard. I was just seen as a daydreaming, shy child with messy handwriting who wouldn’t talk to anyone but I could read a good book! A child that would feel her food before eating it and wouldn’t drink anything purple (I still to this day do not know why, but have come to learnt that purple drinks are actually quite nice!)
I can remember the feeling of utter horror every morning before school- Are we going to do Art today? Am I going to get mucky hands? Who is going to talk to me? Is the teacher going to shout? Will she shout at me!? Well why is she going to shout at me?? Oh… I better not do that then.

This was a ritual every morning, it may seem extreme to a normal “neurotypical” person but to me this was something that needed considerable thought each day.

As I’ve grown up in a neurotypical world, I have learnt neurotypical mannerisms, characteristics etc. I have learnt that actually sometimes it’s not nice to be so blunt about a person as it can hurt their feelings. I have learnt what is appropriate and what is not appropriate and when it is appropriate and so on. I have come to be quite a drama queen, and all of my emotions tend to be fairly over exaggerated, I think this is largely because emotions were always a bit of a mystery as a child and the only real experience I had of them was watching TV. Now anybody who watches it will know that everything is worst case scenario on TV therefore the actors play the emotions out as worst case scenario. Well as a child I did not know any different so I began to mirror these. I am nowhere near as bad as I was and I am slowly realizing that actually- every time I have an argument with someone I don’t have to stomp out of the room!!!

Since diagnosis, I have experienced every emotion you can imagine, some over exaggerated, some not.

It’s eternal answers but eternal imprisonment. Once you know you have an ASD, you cannot go back on that. You can’t erase it from your mind. That took a while to get used to.

You also can’t expect everyone to understand what is going through your head, because if you don’t understand it- how is anyone else supposed to?

Having Aspergers isn’t all bad though. There are benefits to be reaped from it but each of them are a personal journey which anyone with an ASD will embark on. My personal journey is my music, from when I was a kid all I’ve ever wanted to be is a rock star. And I don’t intend to stop that journey now.

Thanks for reading.
MG

Think

2011-11-01T12:13:00.000-07:00

(Trigger-warning: content includes a PSA video addressing bullying)

DIStherapy posted "Think", PSA created by her autistic son about bullying, located here.

Please watch the video through the link.

How Autism Affects Me Now

2011-11-01T11:53:00.000-07:00

Danni Brennand has written How Autism Affects Me Now on Dannilion.com

How Autism Affects Me Now

It’s the 1st November, which means it’s Autistics Speaking Day again. This started last year as a response to Communication Shutdown, which luckily isn’t being repeated again. My post from last year is here, and the website is here.

I was diagnosed with Asperger’s Syndrome when I was 21. Since then I’ve learnt lots of ways to deal with some of the more difficult parts of it, mostly thanks to Interface (the autism unit at South Tyneside College). This doesn’t mean I’m “cured”, though. I was born autistic, and will be so the rest of my life. I still have a lot of difficulties, and the M.E. also makes it worse. Here’s how it still affects me.

Over-sensitivity to noise, light, smell and touch.
That’s all the senses except taste, where I may be over-sensitive a bit (I can’t cope with spicy foods, and much prefer plain foods) but it’s a lot easier to control. My reactions to these are a bit less extreme than they were, but it’s an area where M.E. makes things worse. I normally wear sunglasses when I’m outdoors, I have ear defenders to wear when it’s noisy (which I often have to wear if I go out in public because of the noise of traffic, people and things) and sometimes listen to music to drown out other noises (often with the ear defenders). M.E. in itself causes over-sensitivity, so for me it just means everything feels a hundred times worse when I’m having a bad day. On those bad days, I lie in bed with an eye mask and ear defenders on (because the normal noises around me and all light is too much) and no-one can touch me as even my pyjamas and bedclothes feel like torture. As for touch, I do not like people touching me, but as I’m unable to do things for myself I have to allow it. I am getting better at coping with it when it’s not a bad day, and even let a stranger put make-up on my face a while ago. I also can’t cope with strong smells as they make me feel like I can’t breathe, and some of them make me vomit.

Problems with communication.
Communicating with people uses a lot of energy. It takes energy to listen to people, process what they’re saying, and then respond in a way that they can understand. This is another area that M.E. makes more difficult, as I can no longer just throw more energy into communicating. I am verbal most of the time, but I have more times of being non-verbal than I used to, since I became more ill. I become non-verbal when I’m overwhelmed. With autism it’s from sensory overload, and the M.E. causes it when I’m overloaded because of pain. This can cause problems- when I was in a care home earlier this year I was unable to answer open questions, became non-verbal and wasn’t able to communicate that I needed a drink or the toilet so went without for 19 hours. We have similar problems with the home carers (especially since Johan has the same problem answering open questions) but most at least some of the carers are learning to work around it.

I’m also unable to use the telephone as I struggle to hear what the other person is saying without being able to lip read, have to respond almost instantaneously, and it makes me very anxious. A lot of places still don’t allow communication by email, so I’m reliant on my husband to phone for me. My favourite so far is the National Autistic Society phoning me twice (once on my landline, once on my mobile) and insisting on talking to me. When my husband told them I couldn’t talk on the phone, they asked why, then one of them didn’t understand when my husband said it was due to my autism. They said they were going to write to me about what it was, but so far I’ve not received anything, and it was at least a month ago.

Meltdowns and shutdowns.
This is hard for me to talk about, as I don’t really want other people to know what I’m like at my worst, but since they’ve been happening more than normal recently I should probably mention them. A meltdown is similar to a panic attack in appearance (I also experience panic attacks) but it’s not the same inside. With a meltdown I lose complete control. I say my brain explodes, as that’s how it feels. I’m so overwhelmed by all sensory input, all my internal feelings, all emotions that I just can’t cope. I may scream, may hit, bite or scratch myself (I keep my nails short after scarring myself during a meltdown), and there’s nothing anyone can do to stop it other than wait it out. Unlike a panic attack, I don’t have enough control to end it as I can’t think at all, it’s just a massive amount of badness in my brain. Afterwards I’m completely exhausted, and need to sleep (this was true even before the M.E.). They used to be very rare, happening at most once a year, but they’ve happened a few times this year because of issues with carers and things.
A shutdown has the same brain explodiness, but instead of it being expressed outwards I just stop doing anything. I don’t move, don’t respond to anything, can’t hear, can’t think. I will remain in the same position for however long it lasts, which can be hours. Again, it’s exhausting and I’ll need to sleep when it’s over.

Anxiety and panic attacks.
Anxiety is common in autistic people, and I’m no exception. I do not like change, and though I don’t need a set routine as such, if there is a timetable then I don’t deal well with it being changed. I also become anxious if there’s too much sensory input, as my brain can’t process it properly. An interesting cause of anxiety is related to the dislike of change- I can’t cope if my carers arrive early (though can if they come late). This is because I have to mentally prepare for them invading my personal space, expecting me to communicate with them and possibly touching me. This takes time, so if they come early I’m not prepared and panic. I also panic if my anxiety builds up and I can’t get rid of it, or if there’s a sudden loud noise or someone touches me unexpectedly (especially if already anxious). When I panic I can normally calm myself down pretty quickly if the trigger is removed, but it is very tiring. If people talk to me, touch me or tell me to breathe (for some reason, trying to control my breathing causes me to become very anxious and panicky) then it will last longer. I used to rock, pace or flap to reduce my anxiety, but my M.E. means they’re no longer an option. Most of the normal suggestions (breathing, relaxation exercises, and things) don’t work or make things worse, but distraction sometimes work so I may listen to music (which also has the advantage of blocking out noise).

Lack of body awareness.
This one didn’t used to be a big problem, but since I became ill it’s more of an issue. Most of the time, I have no real awareness of my body. This means I’m not sure where it is in space, what it’s doing, and how it’s feeling. The reason this is a problem is because often I’m in pain (M.E. causes muscle and joint pain, headaches, sore throat and other pain issues) but I’m not aware of it, or if I’m aware of it I can’t tell where it is. I get asked a lot by doctors where the pain is, and it can take a long time for me to figure this out, if I ever do. The doctors don’t really understand how someone can be in pain, but not aware of it or where it is. Luckily for me, Johan is pretty good at telling me when I’m in pain (I tend to get crabby with him) so I can take painkillers.

———–

There are probably other areas where autism affects me, but brain fog means I can’t think of them right now. You may notice that social interaction isn’t there. That’s because it’s not a problem for me at the moment, as I’m pretty much housebound so the only people I really interact with in person (other than my husband Johan) now are doctors and carers, and I have scripts to deal with those situations. Johan understands me very well- he knows if I can’t speak I will type and use gestures to communicate, knows what to do if I’m panicky, in pain, overwhelmed and things. He also has some of the same issues I do, and is currently being assessed for autism.
There are many positives to being autistic, and I wouldn’t want to not be, as it’s a part of who I am. But just because I am able to type well, speak (most of the time) and before getting M.E. able to live pretty independently it doesn’t mean I don’t have my problems due to it, and I still need help to deal with them. I’m getting there though

ASDay: 1 Year Later

2011-11-01T11:48:00.000-07:00

Melody Latimer has written ASDay: 1 Year Later on ASParenting.com:

There is something to be said about inspiring, upbeat blogging. It creates a sense of worth in all who read it. Last year, what I wrote, I felt was inspiring and upbeat looking at all the representations of this thing we call Autism.

What I have lived in the year since then has shown me something new. Resilience.

After a car accident that’s left me crawled up in bed for days… after a move into an apartment… after failed attempts to keep my boys in ‘their’ school… after joining the employed ranks at ASAN… I have continued to drive forward.

For those that know me, it’s pretty plain to see that I’m completely overwhelmed, overworked and over-extended. To those who just take a glance, I appear together, thriving and tenacious. The truth is, I’m both. I must be both. I have a drive and need to be the together, thriving tenacious person, but it will always leave me overwhelmed, overworked and over-extended.

Those who see me as the together don’t question what I’m doing it all for. Those who see me over-extended don’t question what I’m doing it all for. There is a future for us all, but only if people DO over-extend themselves. My therapist says it’s because I’m a Type-A personality, that I have unrealistic expectations of myself. And she is completely correct.

But I ask those who do doubt why someone like me, who really cannot “handle it” all, who needs to take 30 minutes of break time for every 10 minutes of work, would continue to persevere. Why would I have these unrealistic expectations for myself and for humanity as a whole? Because if I don’t, I’m bound to sell myself short. And you would be bound to sell me short. And then my children would be bound to a life of never dreaming and never rising above.

I do it for me, those like me and for those who will come after. Because if I won’t do it, who will? The person that can handle it? That only teaches the disabled and Autistics that they can never or will rise above.

This past year, I have seen many struggles… But I have also seen that I can get through them, with a lot of support… with a lot of effort… and some very high, unreachable expectations.

Spectrummy Mummy

2011-11-01T11:46:00.000-07:00

Spectrummy Mummy wrote this on her blog:

Autistics Speaking Day

Today is Autistics Speaking Day. Autistics Speaking Day is about speaking out and being heard all over the world. Please click >here< to find the collection of posts by advocates and allies at The Thinking Person’s Guide to Autism.
As an ally, I’m taking a day off from writing a post to share my collection of Facebook updates featuring the inimitable Pudding. If this isn’t enough, <here> is another post featuring the language of our resident Aspie. My wish is that one day she’ll be a proud advocate and member of a collective who won’t be silenced. Until then, I still think she has much to say…

Pudding has a crush on an older boy at school. Merely mentioning his name makes her cover her eyes, coyly. I asked her what he is like to figure out her type.
“He is like babies, with a Hello Kitty head.”
Making toast for breakfast, I ask Pudding if she wants jam. She doesn’t. To clarify things…
Me: Do you just want butter?
Pudding: No, I want toast and butter.
Following a paint incident, I let Pudding wallow in the bath as long as she needed. After half an hour, I asked her if she was a mermaid. “No, Mummy, I’m a girl….and a fairy.”
I forgot how many toys the kids have. WAY too many now that they’re sharing a room and we don’t have a basement. A local orphanage will shortly receive a very big donation.
Me: Pudding, do you like having all your toys back?
Pudding: Yes….What is Santa going to bring?
Me: AAARRGHHH
Pudding: “Ooh, my hair is all windy.”
Daddy: Pudding, what did you do at school today?
Pudding: No!
Dadddy: No is not an answer.
Pudding: Yes?
Pudding: “The sky is very high, Daddy.”
Me: Kids, put your toys away.
No response.
Me: I’m running out of patience.
Pudding: You need to get some from the store.
Me: We have to think about what you’re going to wear to school tomorrow.
Pudding: Clothes.
Last night Pudding was coughing and sneezing.
Me: Are you sick?
Pudding: No, I’m not sick.
Me: Have you got a cold?
Pudding: No….I’ve got a warm.
Pudding was “driving” around the house with the GPS (that I mentioned in yesterday’s post). She came to sit down next to me and said: “You have reached your destination.”
“Goodnight Mummy, see you on next tomorrow.”
Me: Do you like your new Hello Kitty bubble bath?
Pudding: Yes, it smells like cats!
I bought a buttercup cake pan this weekend, and Pudding was so enthralled that she made up a story for it. Here it is word for word: “One day Mummy made a flower cake. The End.”
Pudding on the royal wedding: That’s not a princess. Turn it off! Want to watch Sesame Street!
Me: Tomorrow is Easter.Pudding: Shall we make a birthday card for Easter?
Me: Pudding, what are you doing?
(Sound of water being poured)
Me: Don’t tell me that you’re pouring again!
Pudding: I’m not pouring…

>Here< is the post I wrote last year about the importance of social networking, speaking out and being heard.

Changing from shame to pride

2011-11-01T11:27:00.000-07:00

Alicia Lile on Moonlit Lily wrote Changing from shame to pride:

It’s very common for autistic people to feel burdensome for our loved ones and for society, common to feel shame of being autistic, it’s sadly expected the existential guilty, there are entire narratives of how we should feel that (and how we don’t feel anything), how bad and wrong our autistic existence is, how who we are can be mourned, but this shouldn’t be happening, no one should feel like this, accepting this as normal is something that should be shameful for all that surround us, since they repeat this about us without feeling the weight of this judgement on their lives.

We also repeat this belief, we accept this shame as something natural, we feel the weight on our lives and the people who are free of this pain continue to hurt us, sometimes they hide this ugly thing in their love for us, they love us but if only we weren’t like that, this makes things worse, because we love too, we want to be loved completely, so that goes against our sense of self, we do our best (or our worse form another perspective) to look like everyone is supposed to be, not to be a better person, but to be a normal person, a non-autistic person.

One thing I need to clarify, many appear to understand something wrongly about being cured of autism, I do not wish to be “cured”, what I do wish is to love me the way I am, I also wish to keep changing to be the best person I can ever be, everyone changes, for better or worse, autistic people too, my changing as a person has nothing to do with being “more or less autistic”, with functional labels, with “symptoms of autism” or anything like that, it means that as a person we all change, I wish to keep being a good person and getting better, an awesome autistic person.

When we argue against cure, we don’t argue against having more skills, having a better life, being a better person, we want that, but we are always going to be autistic, and ultimately the really important part is to know that is a good thing.

Accepting Autism is not a defeat, is a great gift, it’s not the same as not changing or not wanting the best, is starting to love who we are (or your autistic child, sibling, friend, etc).
I think it’s enough of shame and guilty, of burdens, of prejudice, of sacrificing all for normality.

I think it’s time of acceptance, but even that is not enough. We need pride and love, not the type of – ‘I love you but if you were…’, but the’ I love you completely’.

Why do all of us need this?
A few examples of why, I read things from relatives of autistic people who worry me, like a parent of two children saying their typical child is wonderful, how the others members of the family are mentioned one by one as great people, but nothing about the autistic child, on a site about how Autism is terrible, not a single line about the autistic child, while the typical one is talked about with love, the autistic child is just the site theme and family burden, I read how an autistic person had their face lifted by their chin and looked in the eyes and how a parent says that there was no one there, I read how parents lost their (alive) children because of Autism, kidnapped by Autism, on these stories people listen and care about the family, I don’t, I think about those people who are not treated as people, those who ‘lost their souls’, I know they are right there, listening, this is terribly wrong and sad. We are right here and we are treated as we don’t exist.

How many times we must adapt and sacrifice for others? Why are we less of a person than others? Why are we never good enough?

I don’t know.

I am well aware of the difficulties and frustrations autistic people have, I have several of those myself, I’m not saying to pretend we have no difficulties, absolutely not, we can recognize that and feel pride at the same time, one thing does not exclude the other, I accept I have a disability (which is not a fate worse than death as many might think) but I am more hurt because of the guilt and shame, I suffer more because of the so-called normality than because of Autism.

I do not wish to overcome Autism. I’m autistic and I’m proud of it.

While I write this post, I can literally feel my mind fighting me, at the line above for example, I have a terrible feeling of wanting to erase that, because all I was ever told is that I’m not suppose to be proud, I’m suppose to be ashamed and guilty, I don’t know how many times I erased something good I wrote here and tried to diminish what I know is right, I changed from ‘being autistic is a good thing’ to ‘being autistic is not such a bad thing’, I changed so I could make allistic (non-autistic) people comfortable, I changed because my mind is fighting me, but then I decided to keep like I wrote first, because it’s not about allistic comfort, it’s not about the right to see Autism as a terrible thing, it’s about autistic people, all of us, it doesn’t matter how Autism affects you, everyone has the right to feel good being who they are, you don’t need to present arguments on why your existence is worthy, you don’t need to have this great splinter skill to compensate things, you don’t need talents, when I say everyone is worthy it means everyone.

So I am going to start to change how I feel about myself, how I feel about being autistic and disabled, I will start practicing being proud of it. It’s not easy when everyone disagrees, when the expected is something else, when the idea of being autistic and proud is considered ridiculous and sometimes even dangerous, I know all the possible arguments people will say, that I can only feel that because I’m ‘high-functioning’, I’m not and this is not the point, I will read the “what about the severe type of Autism?”, well, guess what, the more affected by Autism need this too, all people need to feel good about themselves, if you can’t talk and people treat you like there is no one there (I know this because of personal experience) you need this even more.

I know that life can be extremely hard for autistic people, I live it, let’s not make it worse, saying Autism makes someone suffers as an argument here doesn’t work, why the person is really suffering? It could be something that has nothing to do with Autism, if other people are cruel to you, it’s not alright to say they treat you badly because you are autistic, they treat you badly because they are terrible people, if you have serious difficulties, feeling that your existence is bad is not going to help you, why make things worse when you can feel better?

Blaming the person or Autism (which can mean the same as saying that something in that person is bad) for every suffering doesn’t help, maybe the person would have more joy, more happiness when feeling that the fault is not theirs, that who they are is alright, that being autistic is a good thing.

We need to accept Autism, we need to feel proud of being autistic, we need to love ourselves.

Pails to the Radio

2011-11-01T11:22:00.002-07:00

This is a prose piece by Kate Gladstone for ASDay.

Pails to the Radio

I forget the man's name (if I ever learned it). He said he was a disability self-advocate with an autism spectrum condition. When he learned that I, too, am on the spectrum, he told me how he was repeatedly refused the legally guaranteed accommodations for his multiple disabilities, which range — he informed me — from autism to a visual disability requiring that everything he is given to read must be provided in large type.

Smiling like an Olympic medalist, he pulled from the pocket of his jeans some documentation he had prepared. He explained that he shows this paperwork to every government agency, organization, and business he deals with, either when he arrives or once they make life harder for him by not (for instance) providing him with large-print copies of forms and brochures.

The documentation — at least eight pages of closely spaced small type, detailing his disabilities and the accommodations he should receive for each — was faded, worn, grubby, and fragmenting at the edges. Several words and phrases were grimed beyond reading. Others had disappeared into holes worn by pants-pocket transport. (He said that he has been carrying his papers around for years, replacing them whenever they finally fall apart or when there is a change in the rules or in his requirements.)

The man with the eight grimy pages complained of irresponsible office staff who ignored his needs. After all, he had bothered to list his requirements, list the applicable laws, then print out new copies whenever the laws changed or his documents fell apart completely.

"Those bureaucrats are breaking the ADA law," he explained — "Most of them won't even pick this up and look at it when I tell them to. The rest take one look and either won't bother to unfold it, or claim they can't read it and say it's my job to put it into a usable format if I want action. Even the ones who do bother taking a look — well, sooner or later they say it would be prohibitively expensive in time and effort for them to meet some need I have. They talk about how the law lets them off the hook if the expense would be damaging."

"About them not looking at your documentation — why not carry it in something other than your pocket, so it can stay safe? Maybe get the next copy laminated? A laminated copy would not need to be replaced so frequently — and office staff would have less excuse to ignore it, because it would be legible."

"No, laminating would make it harder to carry around. Also, I shouldn't have to spend money on laminating because I'd have to do it again each time there was a change in my needs or a change in the laws."

In other words, he objected that it would be prohibitively expensive in terms of time and effort. That exempted him, he was sure — and he was equally sure that other people, if they could benefit him, should not be exempted.

"If it even was necessary to go to such trouble for me to just get my disability needs met"— the self-advocate continued — "then it would be something that should be done for me as an accommodation anyway. I should not have to be the one to make stuff happen."

"Lamination can be costly," I agreed — "When paperwork can't be laminated, another way to protect it is to put it in a zip-lock freezer-bag. That costs much less than laminating, and is simple to replace when needed."

"But you're still suggesting that I should handle my own needs at my own expense. It isn't my job to put out effort and expense for my needs — that's their job."

He cited his need for large print. "Any office with a copy machine can use the ENLARGE setting. I tell them to just take whatever they need me to read, and photocopy it on ENLARGE, and they complain it's too much time and trouble. Do they think it takes time to push buttons? Do they think it costs money to run a Xerox machine?"

I agreed that photocopying is easy (though not free) and wondered if he'd used alternatives when he couldn't get enlarged copies.

"Do you have a cell-phone?" I asked — "You can enlarge things on a cell-phone camera, too. If they won't give you large type, take a picture of whatever's in regular-sized type, and enlarge it. Lots of people do this when they have trouble reading fine print."

"Sure, I could do that, but why? Are you putting the onus on me to meet my own daily needs?"

"Yes," I told him.

That was the first time I'd heard self-care called an "onus" as though it was wrong and stigmatizing. (In my shock at hearing this implied — by a self-styled self-advocate — I failed to reach a better answer: that self-care and self-advocacy were not a burden created by me. The burden was on him already, whether I said so or not.)

"But that's not fair — " he sputtered — "to talk as if I'm the one who must take action to get my needs met! It's supposed to be the agencies making this happen: that's the law! Thinking I should make the effort is a denial of my civil rights!" He frowned, folded away his grimy self-advocacy aid, and shoved it into his pocket as he turned and left.

I recalled a quote from the biography of Viktor Belenko (ex-USSR fighter pilot): "If you want milk, take your pail to the radio." That saying had been common during the Stalin and Khrushchev years: the citizens' way of summing up the frequently announced new laws, new directives, new goals, new mandates, new ideological criteria that (the announcements claimed) meant fairness and abundance for everyone. While production and delivery systems erred, collapsed, or failed to materialize, radio broadcasts and the newspapers fed the public on announcement after government announcement of unprecedented bumper harvests, of supermarket shelves full to bursting, of clothing shops and hardware stores full of marvelous new items which were now to be had because citizens had a right to them.

On the radio, there was milk; at the store, there wasn't — and on the farm, the cow was gone: it had died, or been killed, in the famine concurrent with the previous wave of announcements. "If you want milk, take your pail to the radio."

That fellow with the eight pages of small type, I judge, has been taking his pail to the radio for some years. He resents the radio for not giving milk — and resents anyone who queries the flaws in his milking procedure.

He is not alone. As a person with disabilities, I notice when others with disabilities have been taught to "take their pails to the radio" and, by implication, to ignore other ways of getting what they need.

Take your pail to the radio and wait, because the radio guarantees you'll have milk. If the radio does not give milk — complete more paperwork and twist the dials harder. If someone suggests looking for a grocery store or a cow (or a neighbor with a full fridge, who might be persuaded to share if you fix the neighbor's computer) — condemn the suggester as an opponent of your civil rights.

We people with disabilities are constantly, officially reminded that we are "people first, and disabled second."

People exchange things they have for things they need or want. Often, it's money — just as often, it is at least minimal effort (if you want an enlarged picture, push the ENLARGE button). Other exchanges are less obvious but are still present. (Children, for instance, receive care because of the intangible but real rewards that they bring to their parents.)

But when it comes to people with disabilities ... too many of us have been taught that it is unnecessary, that it is even an "onus," to wonder what we might need to do, or might offer others, as part of gaining the goods or services that we want, that we need, and that we believe we have a right to. We've been taught to "milk the radio" (or to expect others to do it for us) — and wonder why we're thirsty.

Chasing Typical

2011-11-01T11:21:00.000-07:00

Matt Friedman has made the post "Chasing Typical" on Dude, I'm an Aspie.

This is a day for autistic pride. We have so many reasons to be proud. Yet it remains difficult to be as proud as we should. Because for all the awareness we raise, we still feel like aliens on this planet. We do not fit in. It is hard to be proud, when many of us carry with us a sense of shame. If you are a neurotypical (NT), I would like you to understand where this shame comes from. Because every day, however unintentionally or implicitly, you expect us to behave as neurotypicals do. This is an expectation we cannot meet.

I have been told, throughout my life, I have so much potential. I could do so much more. If only I would learn to be more outgoing. I heard it as a child, before anyone knew I was autistic. I still hear it as an adult, from people who know I am an Aspie.

Please read the rest of his post on his blog.

A disjointed ramble on four subjects

2011-11-01T11:15:00.000-07:00

Catsidhe has written a post:

Doubt

There are four learned men on a train travelling through Scotland. As they are looking out the window, they see a sheep.

"Ah," says the first man. "Sheep are white in Scotland."

"Some sheep are white in Scotland," corrects the second.

"At least one sheep in Scotland is white," adds the third.

"There exists in Scotland a sheep which is white on this side," says the fourth man, and returns to his book.

Autists tend, as a rule, to be like that fourth man. So when we are trying to distil what the "Austistic Experience" is like, we tend to qualify strongly: I don't know what the "Autistic Experience" is, because I don't know all Autists. Not even 'most' Autists by orders of magnitude. I know a couple of others, I suppose, but I wouldn't call that "many". And anyway, I don't know what their internal experience is. I am able to speak for exactly one Autist -- myself ... some of the time.

And Autists tend to take people at face value. It takes us effort to consider that someone might be lying, or that they might have an agenda which is distorting their evidence, or that they might, despite their air of assured confidence in their own correctness, simply be utterly wrong.

We doubt. But because of a lifetime of being the odd one out, of being the one quiet dissenter in what appears to be a sea of unanimity, we most of all doubt ourselves. There's always that niggling voice in the back of your head whispering "... or maybe it's just you."

Or maybe that's just me.

Combine that with Alexithymia: the inability to articulate -- even to yourself -- your own internal emotional state, and we find ourselves blown about in the breeze. Maybe that article which says that Autists are like psychopaths is true. Maybe all Autists are characterised by uncontrollable rages and incessant stimming. Maybe Autists really don't care about other people.

And yet... I have learned to control my rages, most of the time. I only stim when I'm stressed... so as I notice, anyway. I certainly think I care about others.

Maybe I don't cope as well as I think I do. Maybe I just think I care about others, but I don't really. I have logical reasons for why I want to be around my wife and my children, but I also have times where I want even them to just go away and leave me alone for a while. I don't know what "Love" is supposed to feel like; how do I know that I'm not just pretending to "love" them... even to myself?

Or else... maybe this is evidence that I'm not *really* Autistic. Maybe I'm just lazy and undisciplined and stupid, like I spent most of my life thinking I was. Maybe those people on the internet are right, and I am just inventing a condition to explain away my failings. Maybe I'm running away from my own broken self, instead of facing it and fixing it. Maybe if my experience of "love" is so different from how it's described, then I don't really-- No. I can't even finish that thought, not even hypothetically.

Is that evidence for or against the proposition? Which proposition?

It's really, really hard to put your own experience to the front, and have the strength of will to assert, even to yourself; "Maybe everyone else is wrong." Especially so when your entire life has been the experience of being the one who is the odd one out, whichever group you are in.

Assumption

“Before a man speaks it is always safe to assume that he is a fool. After he speaks, it is seldom necessary to assume it.”
--- H. L. Mencken

We fight, our whole lives, against assumptions. We all do: men, women, Autistic, Neurotypical, gay, straight, black, white, everyone. We are formed by what we are thought to be, by others, and by ourselves. We are expected to be smart or dumb, base or refined, educated or ignorant, cold or emotional. Other people treat us differently based on these assumptions, and we expect more or less of ourselves based on how we match up to our own expectations of ourselves -- our assumptions of what we should be.

We, all of us, are moulded by society, by those who surround us. For high functioning Autists, this is no less true.

Before diagnosis, this force to conform can cause intolerable stress. There are things which we are expected to do which Autists simply cannot do, or can only do with difficulty. Things which are taken for granted so much as to be invisible until the convention is broken.

People are supposed to like socialising. People are supposed to be able to look one another in the eye, unless they have something to hide. People are supposed to be able to chat in noisy places. People are supposed to react appropriately in a social context. People aren't supposed to freak out in crowds. People aren't supposed to find common and unremarkable sensations to be intolerable. There are all sorts of things you don't realise you assume until that assumption is violated.

And there are assumptions made about those broken assumptions. If you can't hold someone's gaze, you are assumed to be shifty. If you overcompensate and stare, you're assumed to be creepy. If you can't remember what you were supposed to be doing, you're scatterbrained, or undisciplined, or lazy. If you react too oddly, then you're rude.

Awareness

“We live on a placid island of ignorance in the midst of black seas of infinity, and it was not meant that we should voyage far.”
--- H.P. Lovecraft

After diagnosis, the stresses are different. First, there is the stress of re-evaluating one's entire life in the light of this new information. It's not a trivial thing to retrofit such a fundamental and powerful addition to one's very self-identity.

But then you start to pay more attention to what people say about Autists and Aspies. You can't help it: you hear the word "autist" and your ears prick up, you join an internet group to see what people are saying. You discover yourself as a citizen of a new world. And with that, you discover that not all the things said about you are nice.

You discover that people are antagonistic to Aspies, because they knew someone who everyone knew was an Aspie, and he was a rude entitled prick. (Well, I'm sorry about that, but I don't think that person is representative... or is he? How would I know?) They are antagonistic to the very idea of Asperger's Syndrome, because it's an excuse to be a rude entitled prick, and it's not even a real condition, it's just bad behaviour, and those spoiled brats wouldn't even be that bad if their mothers and doctors stopped coddling their
tantrums and gave them more beatin-- discipline. People who get upset with you when you point out that the link between Autism and Vaccines has been proven to be not just wrong but actively fraudulent, as if it's your fault that they have left their children vulnerable to Rubella. You discover that Autists aren't really people, they're more like soulless shells in human form. You discover that you aren't your parents' child, but an empty changeling left behind after the Autism fairy visited and cursed your family. You discover that Autists don't feel emotions: we're like psychopaths, but we're the 'good' kind.

And, every time, there's the Doubt. But -- I'm not that annoying ... am I? I'm not throwing tantrums because I'm an immature entitled man-child ... am I? I feel emotions so strongly that they can tear apart my soul from the inside ... or do I?

Or is it that those emotions are the proof that I'm not really Autistic, that when I present myself as such, that I'm lying. I don't really belong in this community. I don't really deserve to ask for help from that association. I don't really merit accommodations, it's not really an explanation.

Maybe I'm just the horrible failure of a human being I always thought I was.

Maybe it's just me.

Hope

“Learn from yesterday, live for today, hope for tomorrow. The important thing is not to stop questioning.”
--- Albert Einstein

But then... in these communities, even as I struggle against my own instinct to flee them in shame, as a stranger and an alien and an imposter, I find something vanishing rare and precious: people who are saying the thoughts in my mind.

Even in such benighted places as television, there are characters who I actually understand, and who have their own dignity in their difference.

Mr Spock, Worf, Sheldon Cooper, Temperance Brennan. They all find themselves surrounded by aliens who are doing bizarre things for incomprehensible reasons. Where the incomprehension goes both ways, where the people around them don't understand why their passions are so important to them, why they react as they do -- as they must. And these characters must at least pretend to conform. And it is shown -- in Star Trek, and Big Bang Theory, and Bones -- that they are willing to make the effort, but it is an effort, and it's hard, and exhausting, and sometimes you just need to meditate, or fight holographic enemies, or lose yourself in physics, or run away to Paraguay.

We learn, all of us, every day. Not everything comes naturally, though. Muscles grow tired, and not all start as strong as others. Most of us can pass as normal for a while. But it's bearing a heavy load, and all of us need to put it down and be ourselves at times.

Some of us are lucky enough to have found a place, and found people, where we can do that and still be accepted. Where we can put down the mask for a while and stop doing the over-the-top monkey gesticulations which people seem to expect as feedback: grimaces and rubbery faces, where a simple raised eyebrow and long-held look feels more natural. Where it is understood that we get overwhelmed, and not pushed past our limits. That we do get upset at stuff which seems trivial to other people. We know it's trivial, we don't want to get upset -- not least because we know it upsets those around us -- but we do. Giving us warning of change takes some of the sting, else allowing us to hide away and get good and angry until it's out of our system, or else hide away and cry for no reason we can articulate. Where people remember that we hate the telephone with an abiding passion, and don't make us make calls unless we have to. Where we don't have to talk (I'm highly verbal, but sometimes it takes more effort than it seems worth to force the words out, when I don't have the energy to be other than silent).

I've been blessed in finding such a place, and such people.

I hope that in this, at least, it's not just me.

Autistics Speaking Day: For The People Who Speak With me

2011-11-01T10:59:00.000-07:00

Neurodivergent K has posted "Autistics Speaking Day: For The People Who Speak With me" on Radical Neurodivergence Speaking:

This is sort of about allies, but not exactly.

This Autistics Speaking Day, I want to give a shout-out to the people who stand with me while I speak. The word ally works, ish, but that's not their primary role in my world.

They're my friends.

A lot of allies have that ally mentality, where they have chosen a just cause to do right in the world. And good for them-we need people who see the concept and are like "yeah, I'm all for that concept!" and spread the meme. People who speak truth to power in a general sense are a good thing.

But that's not the same thing.

A friend, at least a friend of mine, they have a choice. They'll have to probably make it pretty early in knowing me, because there's a lot of anti autistic and other ableist bigotry that I see every day, & I point it out (and this is why I am always SO. DAMN. TIRED). I see it, I call it, and then they have a choice:

They can minimize, justify, otherwise derail.

Or they can choose to be a decent human being.

As soon as someone starts saying "it isn't that bad" or "you're too sensitive", they have chosen to not be my friend. The ones who choose to be my friend, they consider things and come to a conclusion that ableism or anti autistic bigotry or strobing a light in my face or whatever isn't ok.

And they stand with me. Not like in the abstract "making things uncomfortable for disabled people isn't ok" way (and seriously, keep doing that), but in a bigger way.

In a "that is wrong and unacceptable and don't ever do it again and fuck you straight to hell for doing that shit to my friend" kind of way.

People can be attached to an idea. People are downright fierce about their attachments to people.

And for friends-at least the kind of friends I have-it is personal. Doing something bigoted isn't throwing some vague oppressive vibe into the air; doing something bigoted is directly hurting a real person with real characteristics besides being disabled. You aren't just shitting on "the disabled" when you do that, you aren't just excluding some vague potential people when you don't make things accessible-you are engaging in behavior that makes someone, a real someone, actually in someone's monkeysphere, uncomfortable or unsafe.

It's not really a 'thing' to speak for or on behalf of one's friends, so people doing stuff like leaving a persistently ableist pizza place for good isn't doing a deed for the disabled-it's "FUCK YOU! STOP HURTING MY FRIEND". There's a difference. If someone talks to an ally about how to, say, make people like me understand that they are just concerned about my safety in a rock climbing class, the instinctual response isn't necessarily going to be a condescending "she's right there. Tell her". It's just a different mindset.

So yeah. You want to be a fucking amazing ally? Don't become my ally. Don't work on behalf of me and my community. Become my friend and channel your inner fierce loyalty. It does way more good in my day to day life.

Besides, I am freaking awesome.

(oh, and my friends are pretty ok too).

Jazz Hands

2011-11-01T10:42:00.000-07:00

Autismum has posted this on the blog Autismum:*

Cledwyn, my three and a half year old autistic son, loves Mammy, Daddy, catalogues and his sausage dog KaBoom. Perhaps more than any of these things though, he loves the sound of his own voice.

He had three words that he’d use meaningfully but by the time he was two “Wossiss?” (what’s this), “Daddad,” (Daddy) and “Boob,” (Mammy -yes he was breastfed) were long gone. “Daddad,” never exactly went but became, like “diggadiggadigga” just a sound he would repeat often for some length of time. It’s been a long while since he called me anything at all.

But, love his own voice he certainly does. Even as a tiny baby he’d gurgle and squeak away in his buggy, drawing the attention of anyone in earshot. His sounds soon morphed into songs and I remember him at around a year old, still unable to sit unaided, happily oohing along with any song that reached his ears. Opera was always a favourite. I’m not contending that Cled is a musical savant – nobody who’s ever heard his excited screams whenever he hears a soprano would think that but music reaches him in ways that ordinary language doesn’t.

Please read the rest of the post here.

*post had to be quote-and-link'd due to problems transferring pictures and video media.

He doesn’t look like he has Aspergers

2011-11-01T10:37:00.000-07:00

Randy Brachman on Randy Speaks has written this:

The article that was supposed to be published for Autism Awareness Month:

He doesn’t look like he has Aspergers

When I was a child my dad always referred to me as ‘professor’. “Professor, clean your room.” “How was school, Professor?” I didn’t know why.

When I was 57, my wife told me that her friend thought I had Asperger’s Syndrome. I hadn’t heard of Aspergers. I studied it day and night for weeks, and then I had a neuropsychologist confirm it.HansAsperger, who first identified the syndrome, said the kids he studied were like “little professors.”

In between, I led what seemed to me to be an ordinary life: Career, two marriages, daughter, granddaughters, retirement, and hobbies; except, in a million ways, I wasn’t like anyone else.

Although I didn’t know it at the time, I spent my entire life trying to learn the rules for behavior that most seem to know intuitively. In fact, somewhere along the way I found I had to follow the rules I knew. Lying is nearly impossible. It makes me totally nuts when someone doesn’t follow the rules, whether they be the rules of criminal law or a card game. But following the rules keeps me looking pretty normal.

Ask me about my life, and I will usually talk, like most people, about relationships with family and friends, spouses and children. But actually, I don’t think of relationships as the measure of my life. For many years, I told people, “I hate people.” That always got a laugh. I think I even thought it was funny. But only because it was true. People are a problem. Not just the clerk or the customer service operator or the driver who didn’t signal, but also my mother, my wife, my daughter, my brothers, my sister. Also the friends I have had, though they were few and far between. All people are a problem.

Interacting with another human being is just hard. Experts say this is because those on the autism spectrum can’t read body language or have face blindness or just are not able to communicate effectively in social situations. For me, however, the truth is that when interactions lead to unpleasant experiences often enough, you must avoid them or somehow learn what the rules are. But the rules are unclear and they change based on who and where and when and a dozen other variables. Most people don’t even seem aware of the rules, and just interact without concern. When they occasionally cross a line, they can implement a different set of behaviors to undo the damage.

When I am in the presence of another person, my mind goes into high gear. I am trying to watch and listen for anything that seems … wrong. Out of context. Unexpected. A red face may be okay, after a day on the beach or a few drinks or some physical activity. A loud voice is OK in a noisy bar, or to make a point, or from across the room. A loud-voiced red-faced person may be any combination of those. Or it may be someone who is about to hit you or maybe a person in distress trying to get your attention or maybe something else.

Now go to a small party with 10 people, each with 10 or 20 or more behaviors to be watched and calculated and my anxiety level raises and maybe a drink helps calm that but makes me less able to do all that calculating and … I’d rather be home alone.

In fact, that is the journey: Learning the rules of behavior of a foreign culture. Each day you get a little better. Each mistake teaches you a little more. Your foreign accent fades a tiny bit. You are better integrated into the NT (neurotypical) culture, but it will always be a foreign country. The language in NT land is always a second language, the customs still strange.

So how can I describe this life in my terms? It is not about relationships. It’s about who I am and what I know and how I think. It’s inside my head. That’s where I live. It’s those conversations I have with myself every waking second. It is all the thoughts I would talk about if someone were listening. It’s the awareness of the parts and pieces that make up the universe, and a lot more. All together. All the time. Perhaps everyone has dozens of thoughts at once. Nobody I know seems aware of them all at once.

Another feature of life for me is the desire – the need even – to focus my attention on a single thing. For me it is usually a hobby (scuba-diving, flying lessons, radio controlled model cars, paragliding, golfing, etc.). When involved, I am immersed in my subject, absorbing all I can, sometimes 15 or 20 hours straight, sleeping a bit and starting again. That focus allows me to learn more than most. It’s hell on any life outside of that focus. My interest can stop as suddenly as it starts, weeks or months or years later. Then I can be more engaged with the world for awhile.

Since being officially ‘diagnosed’, I have been more aware of how I differ from the average guy. For example, I was surprised to find out that I have no storage of faces in my memory. I know people from their voice and context and activity and conversation. If I close my eyes, there are no faces. I didn’t know that before. Also, I now see why I turned down jobs that required supervising others and I see why I prefer text messages to voice calls. I get why I love computers. I always know what to expect from them.

Luckily my wife knows what to expect from the rest of the world and keeps me out of harm’s way, mostly.

My Name is Sean and I have Asperger's Syndrome

2011-11-01T10:34:00.000-07:00

Sean Kelly from Sean Patrick Kelly's Little Corner of the Web has written this post:

I didn’t really hear of the term Asperger’s Syndrome (or Autism Specturm Disorder) until I was suspected of having it about 5 years ago.

For most of my life growing up, I thought that all I suffered from was extreme shyness. I didn’t think I was Neurotypical per-se, since I was already diagnosed with a learning disability and ADHD, however I thought my difficulties with social skills were just something I could learn to overcome.

I was officially diagnosed with ASD in February 2008 - two months away from my 26th birthday. It’s tough finding out you have a form of Autism in your mid-20s. While it helped to explain my bad social choices over the years (especially in High School), it was not news that was easy to cope with.

In the years since I was diagnosed, I mostly kept my ASD secret from everybody, except my close friends and family. I didn’t want my ASD to overshadow the fact that I was a very intelligent person, who excelled academically and has a lot to say (when I find the means to say it).

I started to slowly come to terms with my ASD earlier this year when I saw John Elder Robison speak at the Royal Ontario Museum about his experiences with the condition. It inspired me enough to buy his books, as well as any other self-help book about ASD that I could find.
Sadly, it seems recently that ASD/Asperger’s is slowly replacing ADHD as the “it” disorder to be misrepresented by the media. There are some media representations that get the disorder right to a point (such as the 2009 film Adam). However, many other media representations either make fun of it or get it totally wrong.
Sometimes, the joke is small and excusable (such as on the show Community, in which a character says he has Asperger’s only to be made fun of because of the pronunciation - “ass burgers”).

However, there was a more recent (and insulting) misrepresentation of the disorder on the television show Glee (which I used to consider myself a fan of). The third season premiere introduced a villainous character named Sugar Motta, who described herself as having “self-diagnosed Asperger’s,” which “allowed” her to say whatever she wants. Her gimmick was to say something rude to someone, only to excuse it with the phrase “Sorry, Asperger’s.”

Not only was this depiction insulting to me, it also insinuated that Asperger’s is a fake disorder that bratty kids use as an excuse for their behaviour (which apparently really happens - shame on them).

It was that misrepresentation of ASD on Glee (which I have since stopped watching) that resulted in me to take a stand and write this blog post today. This is my first public acknowledgement of my ASD, but I felt it was necessary to describe how ASD affects me.

It’s called Autism Spectrum Disorder for a reason. The symptoms differ from person to person and no two people with ASD are exactly alike.

For me, my ASD hinders my ability to properly communicate with people. I rarely ever initiate conversations and often have trouble finding the right words to say. I tend to avoid talking on the phone whenever possible and I prefer written communication to verbal. I prefer to keep to myself and try to avoid loud and crowded places, which makes me feel uncomfortable. I have the habit of always expecting the worse out of situations and its hard for me to become optimistic about something. This is especially true when it comes to my current job search, in which I am constantly frustrated by my lack of success. I tend to get the most chatty and excited when I talk about my favourite subject, which is movies.

I am still trying to come to terms with my ASD, especially since I was diagnosed as an adult. I am slowly inching towards acceptance and I believe me talking about my experiences today is just one part of that journey.

P.S. Even though the character Sheldon’s ASD-like behaviours on Big Bang Theory are officially labelled coincidental by the producers, I believe he is the best (and most hilarious) media representation of the disorder out there right now.

Autistics' Speaking Day: My Sense of Humour

2011-11-01T10:30:00.000-07:00

Julian Edward Frost has written this, which can be found here:

Autistics' Speaking Day: My Sense of Humour

It’s shortly after Midnight on November 1st in South Africa (timezone GMT + 2), which means it’s All Souls’ Day and, more to the point, Autistics’ Speaking Day 2011. This is my Autistics’ Speaking Day post.
First, some background. Last year, an autism organisation decided to label November 1st “Communication Shutdown Day” in support of autism. People who joined were supposed to stay off the internet for the whole day. While many celebrities including Miranda Kerr, Steven Seagal and even Edwin Aldrin endorsed the day, many autistic bloggers and self-advocates were opposed. They pointed out that the internet is a boon to many people with autism, and that not using the internet for a day would not give insight into the communication problems autistic people face. In response to the shutdown, autistic bloggers Kathryn Bjornstad and Corina Becker set up Autistics Speaking Day as an event on Facebook. I had a post ready to go, and shortly after Midnight on November 1 last year, I became the first of many bloggers to post in support of the day.
Autistics Speaking Day was a huge success. Over 500 people attended on Facebook, almost 100 bloggers posted, Twitter hosted a 24-hour chat session on it, and numerous curious people came to the blogs of the attendees, and read and commented. So successful was the day, it was decided to repeat it again this year. My post will be about my sense of humour.
My mother was raised in the UK although she was born in South Africa. From her, I developed a taste for the British style of humour: sarcasm and witty wordplay. My all-time favourite comedy series is “Red Dwarf”. I also enjoyed “The Brittas Empire”, although I thought its last two series were very weak and shouldn’t have been made. I particularly enjoy Terry Pratchett’s excellent Discworld Series. Tom Sharpe is also a favourite, but I find his more recent books (Grantchester Grind, Wilt in Nowhere) a bit of a let down.
Because of Hollywood’s dominance of the Television and Film Worlds, I’ve seen a lot of US films and series. It took me a while to “get” sitcom humour. I was in my teens before I really started enjoying it. I never could get into “The Cosby Show”, but I enjoyed, among others, “Benson”, “Wings”, “Mad About You” and “America’s Funniest Home Videos“. Best of all is “The Big Bang Theory”, but I don’t always get to see it.
The comic strip “Dilbert” I find hilarious because it rings true. A few years ago, there was a fight in “The Star”, which runs Dilbert. Somebody wrote in asking that it be dropped. Others wrote in in support of Dilbert staying. One letter writer even claimed that he and his colleagues were convinced that Scott Adams eavesdrops on their company meetings to get ideas. Garfield is another strip I enjoy. As a cat lover, I find Garfield’s attitude totally believable. The long-running strip Andy Capp was also engaging. Reg Smythe based the characters of Andy and Florence Capp on his own parents. However, there was a weakness that occurred more and more often in the later years of the comic. Smythe drew Andy Capp for literally decades, and towards the end he ran out of new ideas and started recycling old scenarios. The now sadly defunct “The Far Side”, created by Gary Larson, was another strip I never missed. Lastly, my all-time favourite cartoonist was Carl Giles, who drew cartoons for over 50 years. His most famous creation was “Grandma”, matriarch of the Giles “Family”.
MAD Magazine, the famous satirical quarterly created by William Gaines, was a great read for me as a child. Its humour ranges from the cutting to the absurd and frequently shows great insight. The parodies of films and television shows are often better than what they’re mocking. MAD’s signature item is the fact that the last item in an article is usually a dig at MAD itself.
Two things that I enjoyed at first but eventually disappointed were the television series “Frasier” and the “Adrian Mole” books. “Frasier” started out as very witty, but towards the end it became very anti-intellectual. Frasier (Kelsey Grammer) and his brother Niles (David Hyde Pierce) were both degree-holding psychiatrists who were regularly outsmarted by those around them, particularly their father Martin (John Mahoney), an ex-policeman. In one episode, a person drops dead in Niles’s flat during a party, and the brothers try to get him out without anyone noticing. That did it for me. Adrian Mole, Sue Townsend’s most famous literary creation, first appeared in “The Secret Diary of Adrian Mole aged 13 3/4” and then in “The Growing Pains of Adrian Mole“. There have been several more books, but I think those two were the best. Townsend’s mistake was to not grow and develop Adrian Mole. A review of “Adrian Mole and the Weapons of Mass Destruction” in the now sadly defunct SL South Africa Magazine summed it up perfectly. Adrian is permanently 13 and three-quarters old, and attitudes that are funny, even touching in a teenager are cringeworthy in an adult. In “Adrian Mole: The Wilderness Years“, a now-adult Adrian is sent to a psychiatrist who is female. He then “falls in love” with her. I didn’t find this in the least bit amusing. I just found it creepy, very very creepy.
I’ve smiled at “The Man Song” and I find the performances of Guy on “Tourette’s Karaoke” fun. In both cases, the “victim” is in on the joke. Internet memes, especially the Joseph Ducreux meme, are something I find entertaining because of their often excellent wit.
In general, I enjoy humour where I can “laugh with”, and I squirm when it demands I “laugh at”. I suppose that sums my sense of humour up best.

The Belin Wall for Autistic People

2011-11-01T10:14:00.000-07:00

By StrangerInGodzone on A Stranger In Godzone:

The 'Berlin Wall' for Autistic People

A while back, I wrote a post on some of the reasons why it’s difficult for autistics to articulate our experiences, most especially the lack in the English language of words with sufficient power to describe them. Today however, in honour of Autistic Speaking Day 2011, I’d like to explore another block to our speaking – that of the attitude of others that precisely because we are autistic, what we say has no worth.

The process is one of invalidation. Because we are autistic, it’s presumed we can’t speak for ourselves, don’t know what we want, can’t articulate it if we do, and if we can and do speak, it’s presumed (and we are told) that what we’re saying isn’t valid, because “that’s just your individual opinion” (even when we make plain we’re speaking for a group), and “we know what you need” (better than you do, is the implication), or even that “if you can talk, you’re not really autistic” (despite our real and ongoing difficulties with life).

The resulting practise is one of patronisation. This can happen anywhere with anyone not on the spectrum, but is appallingly common in many disability or autism organisations, I am not going to name names here, but we all know the sort of organisations I mean. The ones who are reluctant to engage with other organisations run by and for adults on the spectrum, who have few - or none - of us on their boards, and who won’t allow us to help in any meaningful way, even when we offer. The experiences quoted below are fairly typical –

“[I was] told to hurry-up and develop resources to encourage employers to employ adults with autism... while at the same time being belittled daily as the token autistic employee of the same organisation and experiencing micro-management because of "fears". Offering to review contract submissions valued at $x million only to be rejected as not having any relevant inputs or experience, then immediately afterwards getting to be (sadly and unfortunately!) the casting vote on repeat [government] panels that fair-handedly rejected those same contract tenders, and because they lacked precisely the input offered.”

“I've had this happen with [x organisation]. "We want your input, help us make the (preschool, adult vocational center, etc.) better for the autistics we serve, we'd love to have your input and have you work with our kids." Uh-huh, 3x at various meetings/conferences, not so much as a call back. But boy, do they know how to hand out my number when they get a call they don't know how to handle, like moms looking for group homes with openings or social groups in rural areas...”

“Still laughing at [the leader of an autism organisation] using the example of their having "employed" me… [yet all the while] forbidding me from talking to people about AS [when they came in to the office]. But she uses it to say "we are an aspie-friendly organisation".”

“I have been ignored twice by a Job Network that assists PWD into employment.. well they say they do.. but I would like to see proof of their ability. I had some good success when. I worked with one Job Network with helping PWDs… but yes I have been ignored, even when I explained what I used to do. Maybe I sounded too eager or something rather than just crunching people out like numbers…”

Additionally, when some aspies challenged members of one autism organisation committee on their claim to speak for adults on the spectrum, they were told ‘we know best’, and that, even they weren’t on the spectrum, the members considered themselves ‘qualified’ to speak for autistic people, and ‘not in need of input from autistic adults’.

I should note here that these aspies are mostly past forty years of age, some have advanced degrees, all have relevant life experiences or skills, and are articulate and self-aware. I’m not entirely sure what’s going on in the heads of the members of such organisations, but it does seem obvious they see us as ‘incompetent’ and ‘defective’ somehow in our capacities, and in need of their ‘help’ and ‘management’. This generally without looking at the individual spectrumite’s actual abilities or experience – regardless, they saw them filtered through the lenses of their perceptions of autistic people, rather than the reality in front of them. We are objects of pity, ‘lesser than’, someone to be ‘assisted’, but never, ever their equals. And certainly not fit to have an equal voice or (for the most part, there are some exceptions slowly emerging) to play a substantial or meaningful role in their organisations. Note – ‘their’ organisations – because so far, despite their claim to ‘speak for’ us, we are certainly not fairly represented in their management structures – and in many cases, not at all.

This is the ‘deficiency’ model of autism, which many of these organisations are still actively promoting – and given that they are seen as the ‘experts’ on autism, where they lead, the general public, and governments, will likely follow, in how they perceive autism. So they have a huge influence on how we are seen, how we are reacted to, how we are ‘handled’, what rights and opportunities are granted to us. This model has become a brick wall, a blanket to smother us and keep us helpless and silenced. It is I believe our own personal Berlin Wall, and like that ghastly symbol of oppression, it needs to be torn down.

And the only way to do it is to keep on keeping on – keep speaking, keep thrusting our truths and our realities forward whenever we can, keep pushing at that Wall till it crumbles to dust, in the face of the manifest and undeniable truth – that we are human beings, with the same feelings, the same rights, the same capacity for humanity, the same range of abilities, as everyone else. Only then, when this truth is known, will we be accepted as the equals we are.

Tudor Acid

2011-11-01T10:12:00.000-07:00

Richard Wigglesworth has shared his music, Tudor Acid, and his song Glass in particular, for ASDay. You can listen either here or here.

Free to Be… You and Me (Autistics Speaking Day edition)

2011-11-01T08:06:00.000-07:00

From Sarah Schneider on Kitaiska Sandwich:

My kids have become slightly obsessed lately with Free to Be… You and Me, the Ms. Foundation’s 1972 book / album / TV special. I have not discouraged this obsession because when I was a kid I liked these stories and songs for their own sake, without much conscious analysis of the message.

Free to Be… You and Me is all about being comfortable with your identity, as long as your identity is entirely defined by your place on a one-dimensional gender continuum: it’s OK to be a boy who cries or a girl who plays sports and doesn’t marry. It has nothing at all to say about being OK with your sexuality, race, class, ethnicity, ability/disability, or neurology. And it’s hard to read or sing it to my kids now without thinking about all the things it leaves out.

“Mommies can be almost anything they wanna be. (They can’t be grandpas, or daddies).”

I suppose an acknowledgment that transgendered people exist is too much to ask of a children’s book published during the Nixon administration. But each time I sing this song to the kids while reading along in the book, my son asks why I skip the line (They can’t be grandpas, or daddies), and I fumble through an explanation about some people being called boys but they don’t really feel like boys on the inside… and usually end up just drifting off awkwardly before skipping to the next verse. My kids are 2 and almost 4, and their understanding of gender identity at this point is limited to occasional questions about whether or not ______ (insert name of person, snack food, or home appliance) has a buh-gina.

Of course, I can’t depend on a children’s book to cover all of this. And I am grateful for the parts that Free to Be… You and Me got right. My kids have never even heard anyone say “dolls are for girls” or “boys don’t cry” outside of this book, and I know I have second-wave feminists to thank for that. Our culture has changed in the last 40 years — not because of the book, but because of the social movement that created it. The magnitude of that cultural shift is apparent when I notice how tame and outdated much of the content in Free to Be… You and Me sounds today, no matter how radical it may have seemed in 1972.

The Neurodiversity movement is just gathering steam, and has a long road ahead of it before it produces a Free to Be… You and Me of its own. Autistic activists are still fighting for some pretty basic things (such as universal recognition of their humanity and right to live in dignity), and they’re starting in a much deeper hole than the white middle class women who were the primary beneficiaries of the relaxation of gender role enforcement of the 1960s.

November 1 is the second annual Autistics Speaking Day. The event is both catalyst and distribution channel for a new body of writing about what it’s like to be autistic. The participating writers and activists are building a civil rights movement, and they’re also stockpiling cultural capital in the form of blog posts, books, interviews, art, videos, music, and comics. Some of them will, without question, write the Free to Be… You and Me of the Neurodiversity movement one day. But most of them have bigger things on their plates right now, like fighting for the right to self-determination; or advocating for access to employment and housing and medical care and education.

Like every other movement for civil rights, the Neurodiversity movement will make progress over time. One of the best things that I got out of the Parent/Self-Advocate Dialogues hosted last month by the Thinking Person’s Guide to Autism was a list of concrete things that neurotypical parents can do to be allies to that movement and make sure that progress happens sooner:

Make it our job to learn about autism. Avoid assumptions. Ask questions.
Remember that behavior is communication. It is just as important for us to learn our children’s language as it is to teach them ours. When neurotypical people engage in conversation with someone with a communication disorder; the burden should be on us to meet them more than halfway to make communication work.
After we listen to and absorb what autistic people have to say, boost the signal. Demand a seat at the table for autistic adults when we participate in disability rights organizations. Don’t sit back and allow parent voices to dominate.
Correct misinformation and stereotypes about autism and autistic people every time we have the opportunity.
Identify and work consciously to eliminate ableist thought patterns and language.
Question autism therapies for our children, and reject any that prioritize modifying our children’s behavior only to increase the comfort of neurotypical people.

For those whose primary source of autism information is the mainstream media, a lot of today’s writing by autistic activists will seem radical, or even shocking—because it challenges the dominant narrative about autism so profoundly. But by the time my kids are my age, I hope the writing that seems radical today will sound as quaint and outdated as Free to Be… You and Me does in 2011. Non-autistic allies can help that cultural shift happen by listening, advocating, and speaking out.
Some of my favorite posts by autistic writers (writing not connected to Autistics Speaking Day)

The Self-Advocate/Parent Dialogues, Day 8 by Amanda Forest Vivian
Why I Dislike Person First Language by Jim Sinclair
Neurodiversity, Self-Determination, and the Magic Pill by Rachel Cohen-Rottenberg
Don’t Mourn For Us by Jim Sinclair
Am I More Than My Autism? I Refuse to Answer the Question by Rachel Cohen-Rottenberg
Dear “Autism Parents” by Julia Bascom
Quiet Hands by Julia Bascom

Some of my favorite writing from last year’s Autistics Speaking Day. I’ll update this list with new posts after November 1.

Speaking My Mind and Heart by Rachel Cohen-Rottenberg
Autistics Speak Day by Kassiane Sibley
Autistics Speaking Day Post by Amanda Forest Vivian
Autistics Speaking Day 2010 by Elesia Aschkenasy
Reflections on Autistics Speaking Day by Ari Ne’eman
ASD: Autistics Speaking Day by Melody Latimer
Autistic Speaking Out Loud by Corina Lynn Becker

Asperger´s Syndrome in Women

2011-11-01T08:01:00.000-07:00

From Sabine Kiefner on Asperger's Syndrome in Women:

We are not silent.
We have a voice and we want to speak.
Listen to us.

High School Jungle

2011-11-01T07:34:00.000-07:00

A poem from Nicole Nicholson found here.

High School Jungle

I am tired of the clichés.
Laughter does not roar. It rises
in walls of sound, evil surf, pouring ocean:
walls of Moses to steal away your sun.

Laughter does not roar; it rises,
grows teeth, when you are not looking.
Walls of Moses to steal away your sun.
And you, dog-bellied, an unstripped bone.

Growing teeth when you are not looking,
the locker room legends learn to use their teeth –
and you, dog-bellied, an unstripped bone,
you are their prey for practice.

The locker room legends, learning to use their teeth,
empty surf from firebrand throats.
You are their prey for practice.
It wraps its arms around your body.

The emptied surf from firebrand throats
casts itself down, digging its fingers inside your belly.
It wraps it arms around your body.
Reaches in, ties your insides into doubled sailor knots.

Casting itself down, digging fingers into your belly,
the surf has entered you, become you, wall of sound.
Inside, you are tied into doubled sailor knots.
Dam up your eyes to stop the tears.

The surf has entered you, become you, wall of sound.
Flooding in the cafeteria, fifth period lunch.
Dam up your eyes to stop the tears.
During cleanup, the only body found is yours.

Flooding in the cafeteria, fifth period lunch.
Cast away your heart as mere offal.
During cleanup, the only body found is yours.
No one pauses to say a prayer.

Cast your heart away as mere offal.
This is how you survive high school.
No one pauses to say a prayer,
and I am tired of the clichés.

First Gay Aspie

2011-11-01T07:12:00.000-07:00

For Autistics Speaking Day, Tony has put up his entire website! Check it out! (some sensory warning for the background)

ASDay on Washington Times Community

2011-11-01T06:37:00.000-07:00

Jean Winegardner (aka Stimey) interviewed Corina for a piece titled "Autistics Speaking Day broadcasts autistic voices" on the Washington Times Community section, Autism Unexpected. Go check it out here.

Twitter post: Matt Walters

2011-11-01T06:32:00.000-07:00

Matt Waltersemailed in his tweet: Don't undervalue those with autism. Instead, try to understand them.

He also said:

Never have I felt the desire for a "cure" for my disability, even
during the toughest of times - it makes me who I am; it's me. All I
have ever wanted is for others to support and understand me which
without, wouldn't make me who I am today. I'm sure this is case for
many (if not all) with autism.

Keep supporting those with autism.