Reblogged: Shopping Expedition gone Awry

Wow. There are so many things wrong in this situation. Talk about deflating! This kind of thing is what many of us autistics experience in daily life. We need to figure out how to educate staff in grocery stores and retail in general, on proper etiquette when interacting with disabled customers who happen to bring friends/support people.

I would love to read suggestions from other self advocates, on how we can educate customer service employees to interact appropriately with autistic people and others with disabilities that might cause them to “appear” less intelligent, for lack of a better expression. Especially those like E who went with a friend, and had the employee talk to her friend rather than directly to her.

My wording is poor, but this has to go out. We have been sitting on this post for a very long time now.

Andrea

The Third Glance

While I know this is really minor compared to some things people go through on a regular basis, and my visible disability is temporary, I just wanted to share a story that happened to me yesterday. Not for reactions, just to point out that things like this happen. All the time.

I’m still on crutches, and as such, need to go with someone to the grocery store. My friend and I have a deal that involves a weekly trip, and we’ve been shopping together for more than a year. I keep him on task (he spaces out a lot, plus, I know where everything in the stores we go to is, and can quote prices, too), and he deals with people for me. It’s a good trade. So anyway, we were on our way out of a store last night, and were about 20 steps away from the register and…

View original post 763 more words

Managing Meltdowns

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…

View original post 1,185 more words

From diaryofamom: she’s not a baby

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

Ann Coulter Discussion Continues

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

Mental Health 2013

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

WHAT THE ACTUAL HELL??? Or, Fuck you, OryCon!

Wow. So apparently Orycon, a sci-fi convention in Oregon that had scheduled an autism panel WITHOUT AUTISTIC REPRESENTATION, said, after being called out for not having autistic representation, that they would cancel the panel discussion.
The advocate doing the calling-out even explained what the problems were with the panel.

What she got for all her efforts and energy and VALUABLE SPOONS was a fake apology.

Yeah. She spends alot of time and energy and that’s what she got. I don’t really understand the entire situation to be honest, but I know enough to be absolutely outraged.

BUT WAIT, IT GETS BETTER! I couldn’t make this shit up if I tried.

THEY HAD THE FREAKIN PANEL DISCUSSION!

Because of YOU, OryCon organizers, certain advocates will probably need days to recover from their frustration and overload and wasted efforts to explain to you what was wrong and how you could correct the situation.

I don’t believe this shit. OMFG, I’m so freaking angry right now.

But I highly doubt this is the first time something like this has happened in the history of autistic self advocacy.

K, and whoever else made such an effort to reach out to these goons on behalf of autistic self advocates everywhere, I am deeply deeply sorry, that your valuable energy was so shamelessly disrespected.

These people clearly had no appreciation whatsoever of the time, energy and stress you may have gone through in order to advocate for yourselves and the rest of us. But I surely do appreciate it. I would never have known about this if K and others hadn’t blogged about it in the first place.

And yes, I used the word goons to describe the organizers of OryCon. Why? Because they fucking lied about having cancelled the discussion panel. Bullshit they weren’t aware of it happening. Read K’s posts I linked to. All of them.

I hope this gets signal boosted into the stratosphere!

Nothing about us, without us!

Ivan, Andrea, and Athena

 

 

 

 

Defining Autistic Culture

I have been extremely depressed for the last several days. Seasonal Affective Disorder really sucks. Reading posts about autistic self advocates not having a voice in autism discussion panels isn’t helping me feel any better either. Another thing that has been bothering me alot is that there are no articles that I can find online, written about autistic culture. Why is that? I found an abstract in an online database written in a paid subscription thing about the subject, but I couldn’t access the whole thing. I am going to check with the library of my university to see if I can get access to the database through there. Hopefully I can. I am so behind on homework and stuff because of depression and lack of initiative and lack of ability to concentrate. I have a special therapy lamp for my seasonal depression, but because of inability to take initiative for much of anything lately, I haven’t used it even though it’s sitting right next to my bed. This is common for us, to lack initiative or ability to take steps to help ourselves when we are stressed out, overloaded, hungry, etcetera. Yesterday, for example, I went the whole day without eating because I just couldn’t figure out how to motivate myself to get food. I also had a lack of desire to eat because I felt like I didn’t deserve to eat. That’s because of the depression. And I didn’t care. Or at least that’s what I thought at the time. It could be a number of things. I just didn’t have the spoons to figure out what was holding me back from doing things I needed to do. Like eating. And doing my homework. I was in a really weird place mentally. At school last week I felt in a weird dark place also.

Something unrelated-I definitely want to see stuff written by self advocates about autistic culture. I could write about it I suppose but, being a math person and not a writer, I have a lot of trouble with that. I wouldn’t know where to begin. I do think we have a culture. Cultures have traditions and rituals. Autistics have rituals. We have unique methods of communication with each other and with nonautistic people. We have different ways of thinking about things. But I suppose one major difference between autistic culture and other well-defined cultures is that within our culture, because every autistic is different, our culture is more a sum of parts. Of course, every individual within a given culture will be unique (because all individuals are unique of course. Sorry for the Captain Obvious moment there, but as I said before, I do much better with math than writing.)

So all cultures are a sum of their parts in a way. A sum of every individual’s contribution to that culture. I suppose what I am trying to say, albeit not very well, is that autistic culture being the sum of its parts is more obvious than for other cultures, in my opinion. The reason being that we have very different means of thinking about and understanding the world around us. Many cultures have a shared sense of understanding and views of how the world works. Or doesn’t work, whatever the case may be. I would love to see more posts by autistics, about autistic culture. That would help me articulate my own thoughts about autistic culture.

Ivan

Disabled Girl Jailed in Pakistan

Whoa. This is ridiculous and outrageous! As advocates, what can we do, if anything, to help this girl and her family?

At the very least people should write to their elected officials and ask them to speak out about it. We must make our voices heard around the world!

Ivan

cyprusdisabilityforum

Pakistan police have decided to decline requests for bail for the eleven year old Christian girl who is accused of blasphemy on the grounds that releasing her would endanger her life and her family. The young girl is held in a state of shock and has not been able to say much to the police.

Christian human rights groups of Pakistan society are enraged and demand that the girl, who reportedly has Down’s syndrome, is released.

On the other hand, Muslim groups in Pakistan are now insisting she is burned alive for supposedly burning a Koran.

As a result of the controversy surrounding the case, Pakistan law is under scrutiny for imposing inhumane sentences on Christian citizens. Many Christian families who lived in the same neighbourhood as the young girl have also reportedly fled their homes in fear.

View original post

From Kittymama-Spread the word to End the Word(s)

More on the issue of using words to hurt people, this time from a slightly different cultural perspective. It says pretty much the same thing. Definitely a good read and well worth sharing!

Thanks to my headmate-sister for finding this. However, autistics are not all unable to lie. They can fall victim to corruption too. Maybe not to the extent of elected officials (but could that also be partly because few if any elected officials are known to be autistic?) yes we are capable of BEING corrupted! It happens all the damn time! But not in the conventional sense. Whenever we are told we can’t do this or that because of our disabilities, we are being corrupted, if we end up BELIEVING those lies. That will be the subject of another post, eventually.

Sorry to Athena for hijacking her reblog. She asked me to finish it for her.

Athena and Ivan

In 2009, at the height of the campaign for the Philippine Presidential Elections, the word that critics used to disparage then-senator-turned-presidential aspirant Benigno Aquino III was “autistic.” You see, Filipinos don’t like using the R word as much as the A word. Call it a cultural difference, but here in the Pearl of the Orient Sea, we like to insult people with the A word.

As a result, I wrote “To Senator Noynoy (An Open Letter to Senator Noynoy Aquino from a Mother of an Autistic Child)” in 2009. This was my answer to the people who liked to abuse the word “autistic’ and I quote:

If being autistic means not being able to lie, then by all means, I should be proud to say I am autistic.

If being autistic means not being able to cheat and rig elections, then call me autistic.

It being autistic means not…

View original post 818 more words

Seeing the Sparkle in Autism

So I read this post again, not exactly sure why I had marked it for reblogging in the first place. I knew there was something about it that definitely warranted a response, and a positive one at that. Some of it is very difficult to read, namely the parts about being in gloom and doom and the “dark side of autism”. That simply does not exist for many autistic people, our system included. But this is the writing of a parent who is gradually coming to see the light, the great potential. This IS a big moment for her son. Her wording may be objectionable in many aspects (note to author: unfortunately many of us self advocates do find things objectionable about parents’ descriptions of their autistic children at times. But please do not take this necessarily as condemnation. It is just a statement of fact. Just listen and reach out. We have reasons, justified or not, for our “harshness” to parents of autistic children as regards their use of words to describe their children. I will attempt to explain this in a separate post.

wisdomfromthesisterhood

I call this moment my “number one reason to love autism moment” because, truly, it was the first.  This was the first time I realized there is some crazy magical stuff inside of autism and just when you think you understand it all, it will knock the wind out of you.  Yeah, in the beginning, autism is every bit of 100% scary and overwhelming and your moments of hiding in the bathtub become more plentiful as you try to hide from the thing you don’t understand and the thing that is slowly taking over your life.  It is either a dark pit to fall into or to pull yourself out of.  In that very beginning, there is no light, there is no positive and, clearly, there is no magic or wonder to be found.  It is mostly black and sopping wet from the tears that seem to be continually clouding…

View original post 1,231 more words