Archive for the ‘advocacy’ 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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Being responsible versus being given a responsibility (or several)

February 18, 2013

What is the difference between being responsible and having responsibilities? To give someone a responsibility does not necessarily mean that the person is now responsible. The word “response” which means “a reaction or reply” to something, is the word I think of when the words responsibility or responsible come to mind. Actually, a friend mentioned this thought to me at a dinner outing last night…we were sitting at Noodles and Company, close to where I live, and we were talking about that briefly over a scrumptious (boy I love that word!) meal of spicy Indonesian peanut saute noodles. A person may have the responsibility of raising a child, but that alone does not a responsible person make. There are countless stories in news, past and present, of young people and celebrities having children without regard to the kinds of RESPONSIBILITIES they would have to face, and when they do not face them properly, they are not RESPONSIBLE.

A responsibility is an obligation bestowed on someone, and “being responsible” is a character trait usually acquired over a certain period of time. The length of time depends of course on environmental factors such as life experience, age, education level (sometimes, not always) and other things. We may explore some of these other things in future posts. People with disabilities can certainly be responsible. That discussion deserves its own post.

Being responsible is learned behavior. NT people learn it by observation and imitating peers. So too can autistic people, but it can take much longer. First do we understand what a responsibility is? Autistic advocates definitely have responsibilities that they take on themselves. Some of us organize protests against Autism Speaks events. Others organize major events such as the ASAN annual gala. Need link to this. Include more examples)
Others give presentations at Autreat, the annual retreat by and for autistic people.

The advocates who participate in these activities have chosen to take on these responsibilities. They are not forced or coerced by others to do these activities. These are real responsibilities though, just like going to work if one has a job, going to school (in my case) or taking care of one’s children. And some autistic people have children too, but that isn’t all that relevant except it is another responsibility that some of us have.

We will have other blog posts upcoming about things related to this: specifically we have plans for a post about the damage parents/family can do to autistic people by calling them “irresponsible” for not doing certain things. If you have something to say about that, or this post, we would love to hear from you!

Collaborative, all of us (finished by Athena)

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Managing Meltdowns

December 10, 2012

Information about managing meltdowns

I would love to hear from other autistic people, about what methods work for them, to manage overload and self-regulate levels of stress and emotion! Please share yours in the comments section! Also if you want to respond/comment on some of the ones in this reblogged list, please do!

Thanks

Athena

Raising a Child with Asperger's Syndrome

Note: I apologize for this post being late. I had this post completely finished yesterday afternoon and my internet connection glitched and I lost 50% of this post.

 Reading Gavin Bollard’s article, Adult Meltdowns and Problems of Restraint, prompted me to ask several of my Facebook and Twitter acquaintances the following question:

As adults, how do you anticipate/prevent meltdowns? Or handle the situation post-meltdown?

The subsequent responses on twitter and Facebook were so helpful to me, I wanted to share some of my favorites ideas.

First I wanted to share my favorite definition of a meltdown:

When the sensory and neurological system becomes overwhelmed to the point of loss of control. This can look like rage or a tantrum but it is deeper than that. – Lynne Soraya

There seems to be three parts to meltdown control.

Prediction:

#5 – Know your Triggers. (@Sunfell) The first step to any of this is understanding…

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Lilee-Room to Read

December 1, 2012

I found this one day while browsing through the freshly pressed posts.

This is an excellent organization, and it made me think of a similar organization based in Montana, that doesn’t deal with reading alone, but builds schools in very remote, hard-to-reach areas of the world. It is called the Central Asia Institute

Please share this important post with your followers.

I got another idea from this post also, something related to autistic advocacy, but it’s separate from this so I didn’t want to write it here. Also, the words haven’t come out for it either.

Andrea

portraits of addiction

I will always think of 2007 as the year that changed my life.  I was 25 years old, a two-time college drop-out, and in a mentally and emotionally controlling relationship.  I partied a lot, barely saw my friends or my family and had completely lost focus of who I was and what I wanted to achieve in life.  I went to work and I went home.  I was lost in a spiral of depression I didn’t know how to climb out of, that is assuming, of course, that I could even figure out where to begin.  I had completely lost sight of who I was and what I wanted from my life.  The only time I ever felt any escape from the dark hole I had dug for myself was when I picked up a book and began to read.  No matter what was going on in my life I…

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From diaryofamom: she’s not a baby

November 27, 2012

This may very well rub some autistic self-determination proponents the wrong way. I was taken aback the first time I read it. Some truths are harder to accept than others. 2 positive things to take away from this:

1) this mom didn’t want to write about it or admit it BUT SHE DID BOTH! There will be time to dissect all the “why she may not have wanted to admit it” later on. I don’t know the reasons. They are her reasons. But I think this is a big step for her and her family. I say this as an autistic person myself.

2) Her other daughter, an NT, pointed it out to her. This girl has ally potential already. Key word is POTENTIAL.

Kudos to DiaryOfAMom for fessing up and writing this. That was a huge step. One that should be recognized.

Ivan

a diary of a mom

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I don’t like this post.

In fact I hate it.

Its content is raw and embarrassing.

But I’m publishing it.

Because I think it matters. 

~

She was right.

Of course she was right.

That’s why it hurt so much.

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That’s why I got so defensive when she said it — and tried to pretend that I didn’t know what she meant.

“Mama,” she said, “you don’t have to talk to her like she’s a baby.”

*

The words hung in the air — thick, accusatory.

My gut reaction was denial.

“I wasn’t, honey.”

It sounded ridiculous. Like I’d just said that the sky wasn’t blue. But look, Katie, my brow is furrowed as though I’m confused, and I’ve even cocked my head to the side for good measure, so I must not know what you mean.

“Mama,” she said, going along with the game,”ask me the same…

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Ann Coulter Discussion Continues

November 24, 2012

We are very glad that people are still thinking about Ann Coulter’s use of the r-word. Just yesterday I saw that someone had found our blog using the following search phrase: “autistic girl’s letter to Ann Coulter”
We do not know of such a letter, just the one we found and reblogged, written by a young man with Down Syndrome.
Talk is good, as it induces thinking. Now it is time for action.

When we have more time and energy, possibly over either Thanksgiving or (more likely) Winter Break, we will attempt to create a list of bookstores which sell her books, with contact information so that people can call and voice their concerns. We would love some help with that if anyone is up to the task; then it can get done much faster and we can get on with making calls or writing/emailing those bookstores! Seriously, we need to do this. Hitting Ann Coulter where it hurts the most, in her wallet, is the best way to send her and everyone else a message loud and clear: that hurtful and offensive comments do not and will not go unnoticed and unchallenged any longer.

Solidarity, fellow advocates and allies!

Let’s do this!!!!!!

Ivan

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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

talinorfali

Don't ever change yourself to impress someone, cause they should be impressed that you don't change to please others -- When you are going through something hard and wonder where God is, always remember that the teacher is always quiet during a test --- Unknown

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Fries and Men. Two things women can't resist. Warning: Content may contain detailed description of fries consumption. Not suitable for those on diet.

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Life with Twins and Autism from a Dad's Perspective

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