Tuesday, October 5, 2010
I used to read the blogosphere for self-interested self-discovery-type information about autism, in order to find language to articulate my experience as I relate it to family, friends and professionals.
My friend said that she doesn't read anymore about autism because the bottom line is that they don't really know anything. I've likewise lost interest in articles about autism and scientific "progress" on the main, because of this. I don't need to repeatedly read inaccurate descriptions of how autistics have problems with empathy, lack emotion, and don't have theory of mind.
I now read the autism blogs for self-interested sociological intrigue, at a special interest level. That is, autistic people who write about their experience and their struggles with the wider "autism community" (read: people "affected" by an autistic person and continue to use the sledgehammer against autistic people for not representing the tragedy of autism as they see it)...
As I think I've written about before, I'm interested in the sociological development of autism as Identity. In the politics of enacting an identity and how that is politically significant.
In how the power politics of the label play out, in who has the "right" to speak, and how they speak as it relates to wider power politics in medicine, disability movements, and popular culture. As such, I peruse twitter as a representation in real-time, a kind of CB radio of how people are thinking about autism. I read with intrigue the ugly, messy personal politics, that grey area rife with black and white thinking and mud-slinging self-righteousness in pursuit of a Truth which doesn't exist.
My experience with the medico-parental discourse is ALL second-hand, because engaging directly with it is far too anxiety-provoking for me. I read about others' struggles with those people. I feel somewhat guilty for not engaging, for why I'd rather blog about why I don't attend protests [than attend protests] or engage with any but the most open and interested parents. I don't write about my rage at medication or ABA or "Autism S(qu)eaks" or misconceptions, for the most part, because I'm not yet prepared to be attacked for it.
So, I continue mainly to consume first-person accounts of people thinking about autism, and blog about my own navel-gazing and pragmatic difficulties in the world. That said, I want to support the writers of blogs and I have started trying to comment on other blogs, and this has earned me a bit more traffic, which then expands my desire to write more politically, more openly, and more assertively about things, instead of whining about sensory overload and such.
If you are autistic and write a blog about autism, post it in the comments. I follow a lot (more than blogroll suggests) so I'm not looking for particular recommendations of other blogs, but if you personally write online I'd like to support it with readership and discussion.
For example, J asked, "Tell me again what that idea [you shared yesterday] about the weekend was?"
In order to tell him, I will think and say something like, "So, as I was telling you yesterday, because I have been feeling lately that we aren't getting enough exercise, I was thinking about maybe this weekend going bike riding".
This is a theoretical example (and may be understating the way I do this), but it does convey something about my speech and thought process. I actually need to start where I started, and reiterate the thought in almost the same way I shared it before. If I don't do this, I can experience a kind of "speech impotence" where I just. can't. get. words. out.
From the point of view of people with "normal" cognitive processes or speech abilities, I used a whole lot of extra words to take a long time to "get to the point". It may be entirely frustrating to listen to me, with all my redundancies and circuitous speech.
Interestingly, I can be more "clear" with the lights off, and with some grounding physical contact. I've noticed that some people with AS close their eyes when they speak. This could be an adaptive strategy to reduce input. As annoying as it is to listen to someone who has their eyes closed and therefore is taking in no information about their listener(s), I can see how it'd be useful if the words just aren't coming as fluidly as I wish.
I'm not sure what this circuitous language process is called, but my therapist said she has known other people who do this kind of thing, and at this point, I can't change it but can develop strategies to deal with it. In the meantime, I hope the people around me continue to have patience as I take "the long way".
Monday, October 4, 2010
Ultimately, I am seeing how important it is to make choices, set limits, and give myself permission to pace myself.
I have an everyday need, for instance, to shut out the world at the end of the day, to turn off the lights and wrap myself in a blanket. To completely relax. The tougher the day, the more this is necessary. Like each activity or environment I encounter has a certain "debt" level. Some things incur little energetic debt, like going for a hike (in fact this can be beneficial to integration and renewal). A movie on opening night incurs a lot of debt. So does work as a cashier. So does trivia night at the bar.
I choose to not limit myself. I prefer a movie not on opening night, but if my husband really wants to see it and it's opening night, I'll gauge how prepared I am to deal with it, and will often go. I'll sit near the front to minimize the number of illuminated cell phones and other movement in my field of vision.
I'm working on getting parts of my life together related to executive functioning, and am going to be working with a social work student intern on day to day living. I have to be mindful of how much debt I'm incurring, so that I can focus on building skills. It means a bit more isolation than I'd like, but I have to spend my energy wisely.
Sunday, October 3, 2010
I realized after the last few posts I did which garnered comments, that this medium isn't much different from my face to face interactions, in that I have a hard time reciprocating. This isn't 100%, I sometimes do have back and forth conversations with people, but usually I don't.
This is social pragmatic language, and I was recently assessed as having weakness in this area.
When the Autism Women's Network posted my profile mid-September, as part of their Pepsi Refresh campaign (go vote for them!) I got a lot of comments and I didn't respond to any of them. I feel bad about that. But I was overwhelmed. Sometimes when I do respond I feel like my responses are like.. cardboard? Dry and awkwardly bent.