Archive for the ‘autism awareness’ Category

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From Guilt to Acceptance of a Smaller Role in Autistic Advocacy

February 21, 2013

So we have been dealing with many guilty and unhappy feelings lately. Let me be clear first: NO OTHER AUTISTIC SELF ADVOCATES ARE IN ANY WAY RESPONSIBLE FOR OUR FEELINGS. We haven’t, fortunately, read any posts by any advocates we know, that suggest that autistic people who aren’t involved heavily in self advocacy are bad people or not serious about wanting better representation in society. We haven’t been more involved in advocacy for several reasons. We are currently in school pursuing a bachelor of arts degree in mathematics. We have had many difficulties in school which are mostly unrelated to subject matter. Though this semester, we have had trouble with some of that as well.

These guilty feelings are doing absolutely NOTHING to help us. Well duh. They are directly NEGATIVELY affecting our concentration. They pervade our waking thoughts (not all the time, but even a few times is too many!). They are unwanted intruders.

We feel guilty about having arrived late on the scene of autistic self advocacy. This is true mainly because prior to our diagnosis, we had no contacts with self advocates, nor any occasions to learn about the movement. Had we known, we probably would have tried to get involved sooner.

Again, we must reiterate our prior assertion that NONE OF OUR GUILT SHOULD BE BLAMED ON ANY OTHER AUTISTIC SELF ADVOCATE! Our current life circumstances (primarily being in college) mean we don’t have as much time or energy to dedicate to advocacy. We just have to embrace a less visible, but no less important and significant and MEANINGFUL role in the process.
There will ALWAYS be a need for advocacy in the autistic community.
Our advice to anyone feeling a similar sense of guilt,

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Mental Health 2013

November 21, 2012

I found this while perusing through posts in various tags we follow. This is a brilliant idea, and I think autistic advocates should have a theme for next year too! A theme for blogging buttons, not just for topics.

How about tackling one theme topic each week too? We can recycle topics also. And then at the end we could have a “blogthology” like Loud Hands has their anthology of stuff written by autistic people. Which unfortunately we didn’t know about until it was too late to submit something. That’s okay, I am sure there will be more opportunities to submit our stuff.
We are looking for feedback on this idea.
Andrea

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The Problem with Autism Speaks PSA

October 24, 2012

Well said! We autistics already have enough crap to deal with on a daily basis, in terms of navigating through a world not built with us in mind at all, having to educate people one by one, etc. etc etc. I could probably say more but it’s pretty late and I need to start winding down. Thanks for sharing, I found your blog through the tag “autism”

Andrea

Stories from the Sand Box...

If anyone wants to know what has been bothering me immensely lately, it is this PSA (http://www.youtube.com/watch?feature=player_embedded&v=73o3TOh99Es#at=10) that Autism Speaks (United States) has put out to prepare for the upcoming election.

“Autism Families” in the United States do not get much assistance with funding and therapies. I will 100% agree to that but I do not think that Autism Speaks, especially as an advocacy organization, has the right to make people with Autism seem helpless and unable to accomplish things.

I originally experienced this discomfort with them in April when then prevalence of Autism went from 1 in 110 to 1 in 88 (I could go on for hours about that) and Autism Speaks (US) sent out an email essentially warning the public about Autism. “At 1 in 88, let me be clear, the United States is experiencing an autism epidemic.” The definition of an epidemic: “A widespread…

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Call for Proposals for 2013 SDS Conference

October 20, 2012

The Society for Disability Studies has announced a call for proposals for their annual conference in 2013 in Orlando Florida. Location details as well as submission guidelines and specifications for each categories can be found here

Let us make our voices heard! This conference, while not autism specific, is a great way to spread our message of inclusion and let others know what works well in terms of advocating for needs and such.

This is also a good platform to try and break down stereotypes about people with disabilities

I am not the best writer so I haven’t done justice to the SDS in writing this but all the info as well as topics from past conferences are on the site I linked to. Please post any questions in the comments section and I will do my best to answer them.

Andrea

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Please Respond to “Falling”

October 16, 2012

Fellow advocates, we need to have many responses to this play. Just because I reblogged it does NOT mean we support it! I haven’t seen this play, nor do I plan to, but we really need to make sure that people hear what we feel about it. If someone is hardy enough to sit through it, that would be a definite plus. Perhaps there should be peaceful demonstrations outside the theater, much like we do at autism speaks walks. Thanks!

Andrea

ETA: if anyone has seen the play and feels like writing a review for it, please feel free to share it in comments section. Positive or negative reviews. Please explain what you liked or didn’t like and why. Discussion is important.

Beyond Autism Awareness

JULIA MURNEY IS A STANDOUT IN AUTISM DRAMA “FALLING”

Julia Murney Is a Standout in Autism Drama 'Falling'

Josh’s favorite activity is tilting open a cardboard box full of white feathers that’s perched on a wall shelf just above his head and letting the contents fall on his face. It is among the few calm moments in his day. Josh is 18 years old, overweight, autistic, and aggressive in “Falling,” Deanna Jent’s fascinating play being given a stellar production at the Minetta Lane Theatre.

“Falling” focuses on Josh’s effect on his family. The toll seems heaviest on his mother, Tami (Julia Murney), who with Josh’s father, Bill (Daniel Pearce), has developed an endless series of routines, rituals, and little games to distract or entertain her son to get him through the day and keep him from attacking people. Daniel Everidge gives a brave and persuasive performance as Josh, portraying a big, awkward baby who…

View original post 411 more words

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Heated debate with family members

October 14, 2012

I was talking to my sister and mother about autism. Heated debate, ugh, got frustrated. They don’t understand about autism rights. Mom told me that the websites I visit for the real truth about autism, may not be true after all. I think I would know better, thank her very much.

This happened many months ago, and we cannot even really remember at all what exactly the content of the discussion was, except what was written above as a draft. I am pretty sure this is a common theme in the disability community; heated debates with nondisabled family members about advocacy related things. They think they know us better than we do! How many people have been told at some point in life, by family or relatives, that the time spent online seeking out POSITIVE writing about xyr disability, or positive advocacy, is wasted time?

Collaborative, Andrea and Athena

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Response to a blog post on “Autisable”

March 19, 2010

I read a blog post on a site called Autisable. The topic was Autism and Divorce.

I’m way too overloaded at the moment to really go into what I think about this but…….I’m reposting a comment I wrote on the blog, here.

People really need to think through their commitment to one another……and to any future children…..
Special needs happen. It’s a chance you have when you decide to have a kid. I’m autistic myself.
My parents have been married for 30 years (will be 31 years in May) and I’ve been around for 26 of those years. They managed to make it work. Granted I am verbal and have been since age 3, I never smeared poo that I can recall, probably didn’t have massive public meltdowns……I wasn’t connected enough to the world for that……though I did interact with others, I wasn’t “all there” so to speak…..I was the only one who knew that though, or so I thought.
I have heard about financial struggles that can come with bringing up special needs children. Part of this I think can be avoided……don’t spend money on therapies or diets or whatever that are questionable at best……had more to say but now am overloaded and hungry so enough for now.
A marriage is a COMMITMENT. Having children is a COMMITMENT……..
Remember that, folks.
And before anyone says “well what if a mom of an autistic child cheats on her husband, what then..”…well, use common sense. It all goes back to the COMMITMENT part.
If you can’t commit, don’t get married or don’t have kids…….one or more of them could end up with special needs……not only autistic, but perhaps other physical issues also………
The Integral

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