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.