Tuesday, November 15, 2011

Changing the Name of Autistics Speaking Day

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.

Sunday, November 13, 2011

Juste un Message/ Just something to say

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


**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!

Sunday, November 6, 2011

Autism and Wonder: a Celebration in Photos

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:

reflection of sky in a little puddlelizard blending in sand
the most beautiful thing we can experience is the mysterious it is the root of all art and science -einstein

Thursday, November 3, 2011

First-class autistic, second-class citizen

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.
A protester holds a sign that reads PROMOTE SELF-ADVOCACY
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?

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.

Wednesday, November 2, 2011

My ASDay by Corina

(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 sleep lab #asday on Twitpic
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.

Morning meds #asday on Twitpic
my morning meds


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

Headquarters 1 of 2 for #asday on Twitpic
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 frontdoor #asday on Twitpic The glass for the front door #asday on Twitpic
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 bf #asday on Twitpic
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. 


Groceries #asday on Twitpic
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.

Share photos on twitter with Twitpic
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.


Used to pretend these were aliens #asday on Twitpic
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 floor #asday on Twitpic Taking out recycling #asday on Twitpic
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.

Remainer of dnd apple crisp #asday on Twitpic
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 on Twitpic
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 in #asday posts on Twitpic
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.


Bed time! Night! #asday on Twitpic
my bed!  Bedtime!

Ta-Da!  That was my day!

Powersuit: Autistic Self Portrait.

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

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


Amy Ouellette
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 than 1,000 characters in my wall post, my family and friends who know about my disability have been supportive the entire time and am grateful for them having faith in my abilities even when I don't always believe in myself :)

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

Lorrie Koehler
I dont have a blog, but I will just say..Yes I have autism. Sometimes high functioning other times??? There are adults who grew up not knowing what was
so different 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 just be myself.
Physically I am forty something.........Mentality ?????? I guess it varies. Just wanted to speak on Autistics Speaking Day.

Jo Qatana Adell
What I don't understand is why people who suddenly become affected by autism get so angry with me. Is it because I can speak for myself when their loved one can't/wont?

Glyn Steiner
I do not have a blog either. My word to others is this: Asperger's syndrome greatly affects my decision-making. And finally I have a mentality of a teenager.

Nadine Silber
I don't a have a blog so I will need to just post something short. So here it is "on one foot" so to speak - good self esteem is even more important than good social skills. Afford people dignity. Do what you enjoy. Be happy with who you are.

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

CarolAnn Edscorn
New employee at work last night. Chatty chatting chattering at amazing speed. I asked for insight from a manager. Next time I go into work, using my auditory recall of topics (mostly past jobs & people SHE knew) I will have a 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 central coherence thing - attention to DETAILS - may help! Do people blather as a habit or as a result of fear and anxiety? The puzzle piece applies to us understanding neurotypicals as well as their understanding of us! Smile--it makes others wonder what you are up to! THANKS

Dàibhidh MacNiocail MacAindreais
i have done nothing for today. my life is in such a bloody mess that it's impossible to do anything. reason for this is the total lack of appropriate actual support that one gets in Finland was a foreigner with a disability: the Finnish system hates foreigners and hates the disabled, and if one is both - then life very soon gets to be a burden more than a joy.

John Greally
‎"I wanted my Johnny to grow up able to communicate for himself and to be independent of his parents. When he grew up he told me he did not want me and my husband running the local Autism Group while he was being "provided for" and his "best interests" taken care of by "those who know". I then realized that my task was not to have raised an independent communicator, but a crushed mute."


Wrapping up ASDay

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

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

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

Tuesday, November 1, 2011

Listen to the Silence

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

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

Liz Ditz's ASDay Posts

Liz Ditz here and here.

More Than Disorganized

More Than Disorganized on ASDay.

On Balance and Tempering

Autistic Speaks on ASDay

Autistics Speaking Day: 13 Myths

Sarah dispells some myths about autism.

How to Find Your Voice

Jason Ross at Drive Mom Crazy.

Stephen Fry on ASDay

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

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

Autisum Speaks Day 2011

Stephen Kelley's YouTube video for ASDay.

Jessica on ASDay

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

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!

Kelly Green at Autism HWY on person-first language.

A Thinking Perons's Guide to Autism on ASDay

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

Daniel's Amazing Words

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

To Be Autistic

(Trigger warning for possible upsetting language)

To be Autistic
Timotheus “Pharaoh” Gordon 

A Simple Wish and Dream

Zoey from Spectrum Times on ASDay.

Autistics Speaking Day by Alexis Yael

Alexis Yael on ASDay.

Finding the Right Planet

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

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!

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

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

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

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

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

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.