Sunday, December 16, 2012

On Autistic, Mentally Ill, Godless Evil

I'm struck by how much dialogue and debate here (in the US, where I'm not originally from) spills into illogical and irresponsible use of religion, the constitution, and even the value of letting the real emotions of trauma *be*. Processing events of magnitude (even when they aren't on the news, even when they are and we aren't directly experiencing the trauma) is a process. All the stuff people are saying is necessary. It is heinous, what Huckabee said. But it was said because at the very least he, a person in power who has an audience to say these things publicly, said them, believes them, and then others agree. So it needed to be said and now it needs to be engaged with, and some engagement will change minds, a lot won't, and a lot of hurt will be dredged up. A lot of old wounds from very deep important philosophical debates emerge from tragedy. Fine. Do it.

But I'm very disturbed about how autism coming up as a "reason" and how the reaction of many autism people(?) (not so much self-advocates) are blaming mental illness. And people who have so called mental illnesses or are on psych mess or whatever, are not blaming autistic people, but either way, it's disturbing to me that people need these scapegoats in order to feel safer. Dehumanizing the criminal by lumping them in with the majority of non criminals who have that label, effectively dehumanizes all of us who have that label.

When a heinous thing happens its not about autism, mental illness, a lack of god. None of these things actually explain what a person experienced that led to this.

the best thing anyone can do, as uncomfortable as this is, is to process the fact that we are connected and process the contradiction of that connection as is it bound up with the individual decisions each person makes. Community and individual actions are inextricable. Do not attempt to render the trauma as good vs evil. what if those concepts were removed?

What if a broken system had less to do with the absence of god in them and more to do with the presence of god in them? What if the very reasons people are alienated from community and are suffering further is so bound up a dominant view of God/Satan/good/evil?

What if the way to deal with suffering is to go to it, not alienate it?
What if it were the case that it is only possible for a person to become separate from the web of community when the community breaks them off and convinces them (and they themselves choose to believe) that they don't deserve the caring and regard of humanity?

What happens when, instead of just being victim to a narrative of ones life in which they are a loser who doesn't measure up, a human being who has been traumatized by life and feels angry about that (for whatever reason, autism label, mental label, or other) -- what happens when that person instead chooses to not be a victim but has no outlet for anger?

Anyone in a vacuum can become distorted in thinking.
Germany was systematically cut off from the outside world, fed propaganda, and we Jews became a scapegoat for all kinds of problems, and genocide resulted.

Think about your own vacuums. Those distortions may be privilege in disguise. Or the seeds of your own suffering.

As uncomfortable as it is to process these traumatic events, it can't be done by the dehumanization of the perpetrator(s). It only allows the possibility for the same thing to repeat itself, because we fail over and over to understand the roots of suffering.

Monday, December 10, 2012

Sensory Issues

The abstract for Intense World syndrome is is so incredibly validating to me I just about cried.  I probably teared up. I don't think an abstract has ever made me cry before. The thought was, "finally".

It's not about fidgeting/repetitive behaviour/stimming/flapping/twirling/whatever.
It's not about lack of making eye contact.
It's not lacking emotional empathy.

In my estimation, based a lot on what autistic people have written about themselves, many of the common external signs of autism result from an overwhelmed sensory system.

Not all of autistic stuff is sensory processing, but I venture a guess that a lot of it is. And I venture to say that at least a few people who might sit in the camp of mourning the loss of Asperger's Syndrome might also argue that they aren't like the people who had an autism dx rather than an Aspergers dx. However I often identify strongly in the other direction.

- since autism 'lines' [of severity] can't be drawn around IQ, nor around functioning (google some critiques of the functioning trope to understand that), I propose those lines aren't really possible to draw in any meaningful way.

- sensory processing is a thing we all do, is a neurological and nervous system (or whole system) kind of thing. If a person has a divergent system for processing external information, so much of that is a 'fish in water' kind of experience. My sensory issues weren't at all apparent to me. Until I got tested by an audiologist and had a consult with an OT.

- this is purely speculative, but based on sensory experiences communicated by my peers who maybe also get labeled as more severe than me or whatever -- may other-verbal, or do more stim stuff or self-injury or have more meltdowns and in different ways than me -- that I would be doing those same things if my sensory integration issues had the volume turned up on them. In other words, I can handle some time in a grocery store. But for someone who doesn't handle that as well, I think much of that has to do with being more affected than me by the fluorescent lights or the noises or the smells, temperatures, etc. Even if the experiences aren't exactly the same, there is the same root at play. Sensory. Not behavioral.

- communication frustration is a huge part of why I may self-injure (severe or not, overt or covert), why I may yell, why I may fail to respond to the person I'm talking with. Feeling misunderstood and stymied in communication is so terribly frustrating. I can imagine that if I more frequently got into non-verbal spaces, or was always that way (because verbal speech production and cognitive understanding are not the same thing), I would be even MORE frustrated. I would be less understood. Fewer people would even be making the effort to listen. Especially if those communications weren't even verbal in the traditional way. (I could ASL as a legitimate Lternative to speech, but AAC is probably even more viable, and for in either case where motor skills affect the use of these, assistance with producing communication is a highly viable path to someone having agency with their voice)

- so. The world is a disorganized, highly intense place. What if the emotional empathy Rachel Cohen-Rottenberg talks about is so very present, but the cognitive production of an empathic response being interfered with (by internal sensory and communication challenges) as well as outside disempowerment) --

Then we are less broken than imagined.

and all those parents claiming that kids who are nonverbal and hitting themselves or whatever are so different than those of us who can write, or talk, or have a cogent argument that challenges their -- or rather discomfort with another way of being -- there is no possible chance of helping.

But if there is a way to understand about sensory issues and communication (organization, and the connection between nervous system integration and cognitive organization) -- it may be possible to address some of the side effects that allistic (non-autistic) people cite as non-empathy or the behaviors that manifest in a lack of social support for autistic people.

Having sensory integration issues and communication issues (that are tied to those sensory issues) is difficult for me, and if the volume were turned up on those issues I think I would have the manifestations of what DSM V calls more severe/lower functioning.

Therefore, the DSM change makes sense, insofar as it has included sensory issues in the realm of ASD. That connection was sorely missing before. I think we need to explore (and research the heck out of) what these sensory systems are doing in autism, how these sensory differences can have multiple causation factors including environmental and genetic, and take those of us with perhaps less severe manifestations of sensory issues and challenge/push the sensory system, in research settings, and study what happens. Study what that does to cognitive processing. Understand better how gut and immunity and cognition and communication and sensory integration aren't all separate.

This post is long and not well written or cited or linked or anything. Don't shoot me (that's what the next post will be about). It's just a mash of my thoughts on why its okay there's no Aspergers anymore. Those people who didn't get the privilege of an Aspergers label? They have been more disadvantaged than me, in a lot of ways because of systemic abuse and other barriers, but I'm not so different from them. I can feel that in all the circuits of my highly empathic nervous system.

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