Speaking

@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

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

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...

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

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

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

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...

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

(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.

From Class ENG 416

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

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

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

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

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

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

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

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

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

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

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.