Archive for the ‘needs of autistic adults’ 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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Reblogged: Shopping Expedition gone Awry

December 16, 2012

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…

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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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Defining Autistic Culture

November 4, 2012

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

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Reblogged: An Open Letter to Ann Coulter

October 24, 2012

More on the response to Ann Coulter’s insensitive tweet! This letter is amazing! I wouldn’t have been able to write something like this completely devoid of anger and harshness. Whether Ann Coulter understands this letter and takes it seriously doesn’t matter one bit. What is FAR MORE IMPORTANT is that many people are speaking out and responding to these kinds of letters from people who write them. People are talking about this issue and taking a stand. That’s how we can effect change.

Bravo, John!

Andrea

The World of Special Olympics

The following is a guest post in the form of an open letter from Special Olympics athlete and global messenger John Franklin Stephens to Ann Coulter after this tweet during last night’s Presidential debate.

Dear Ann Coulter,

Come on Ms. Coulter, you aren’t dumb and you aren’t shallow.  So why are you continually using a word like the R-word as an insult?

I’m a 30 year old man with Down syndrome who has struggled with the public’s perception that an intellectual disability means that I am dumb and shallow.  I am not either of those things, but I do process information more slowly than the rest of you.  In fact it has taken me all day to figure out how to respond to your use of the R-word last night.

I thought first of asking whether you meant to describe the President as someone who was bullied as a child…

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What kinds of apps would be helpful to autistic adults?

October 20, 2012

I am working on putting a call out to iOS app developers asking them to create apps for use by autistic adults. These apps might be of use to people with similar disabilities as well. I am currently working on drafting the post to developers, but I need your help in figuring out what kinds of apps would be useful to us as a community.

Some of my thoughts were:

An app that would help identify current need. For example if I am hungry and unsure what to do because of overload, I would want an app that leads me through steps to solve the problem of being hungry. If I can’t make a decision on something because I have too many thoughts in my mind, I would want an app that would help me narrow down choices. Obviously this kind of app would have to be easily customizable for each individual. Being able to program choices and items would be important.

So, I am asking you, my readers: what apps would be most helpful to you? What should the content of those apps be? What about suggestions for cost?

Please leave suggestions in the comments section, and let your followers in the autistic community know that their suggestions are wanted as well. Thanks!

ETA: Alas, Apple does not accept unsolicited ideas. Therefore, some of us would have to register as app developers. There are different levels of enrollment. The one that would probably be the most appropriate can be found here

Perhaps someone or more than one person can look into less expensive methods of developing ipod/ipad/iphone apps? I should have looked into the Apple Unsolicited Ideas Policy first….sorry!

ETA 2
Actually, upon more careful review of the policy, its not forbidden to blog about suggestions for developers. You just can’t directly submit a suggestion to Apple, I guess because they don’t want to have to pay royalties if your idea is used and turned into something very profitable?

Andrea

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