Why I Keep Trying in a World that Would Prefer I Don’t Exist.

A commenter for my flash-blog called it a rant. Hard to read and so on. I am the first to admit that my writing is nearly entirely generated by just starting and carrying on and in that specific case I gave up when WP restored unedited versions over and over again.

I would call this explanation of why I keep at it an uncomfortable truth but it’s not about climate change so someone might object.

The commentator later said it was her own issue for losing attention but I know there are others out there who I wish could hear my ideas but who can’t wade through them. Both in real life where I either talk not enough or at a frantic pace, and here. It was also too late to keep my deepest inner demon from fully surfacing and concluding only saying that demon is a huge part of what drives me would be honest.

I cry when I admit the full truth of what I see as the danger is in the whole making a label into a global crisis thing. When I was young autism was seen as much rarer but also in terms that set us apart from pretty well every human out there. Our fundamental deficit was seen as an inability to love.

That’s pretty bad science really, getting to a notion of an emotional state or lack of it based on observed behaviour but that the bulk of people identified as behaving autistically back then grew rigid at human touch, screamed and so on if the issue were pressed. It was not seen then as perhaps some sensory issue that made all those things so unpleasant but an inability to love period. Now they dress it up as a deficit in empathy which is just as absurd but maybe a less painful notion for a mother to take in.

I’ve written that my mother improved at unconditionally loving me in the years leading up to her death. What I left out was while that improvement was happening her mind was being changed not by anything I said or did, but by cancer eating away at her brain. I have lived with having to wonder how much of what finally did amount to my experiencing unconditional love from her, was a result of cancer eating up previously held notions and inhibitions that had until recently led to behaviours in my mother that made it obvious while she did love me that love was tinged by shame.

It doesn’t actually diminish how wonderful being with my mother was when her mind was more literally changed was, to understand the brain well enough to know cancer munching away was helping all of what should have been there from the start. It’s less painful to tell myself I came to terms with things and certainly since she is now gone from the planet less painful to not admit this core motivating factor fully.

I’ve seen how ineffective words are in changing people’s opinions about autism. I cannot really live with notions that other parents wind up thinking thoughts that are downright wrong about autism and then more people get to grow up knowing pretty well any second they dare to observe too closely, how much their parents are ashamed of them. I can’t live ethically with not pointing out when a huge leap of logic is being made that could be destructive. I can’t because for me the things people knew about autism caused a complete parental surrender and some pretty horrific things which I will not write about here.

So yes I do tend to ramble. It beats truly facing that very fundamental pain that comes from knowing not that I could not love my mother because of my autism but that she could not, the way love is most fully defined love me. That it ironically took the presence of pathology in her own brain for her to finally look at me with the kind of love a few other people do possess for me.

If I am lacking in empathy for having spent the better part of my life fighting for a better handle on what people meant when they say love then I guess I would prefer to lack empathy than to be so sure I knew what either love or empathy looked like across the full spectrum of people that I said such and such a group is deficient in either.

I don’t think I am actually deficient in my capacity in either case and certainly what I have seen the so called “normal” population do while claiming to be good at empathy would make me wonder about how they define it.

Imagine knowing the people you care most about are often embarrassed by you. Listening as they start explaining you, just in case, before you even get a chance to screw up socially. That’s the less painful present the past was so much more horrible.

In the end I think my mother did experience more unconditional love from me than most. I didn’t hold the pain of knowing what it took to get there against her but more the world that shaped her and that’s why I am passionate about the narrative about autism. I am 45 years old. My life is more than half over. I don’t need to spend time writing things that get summed up in a way similar to my being summed up was. I do it because if society as a whole adopts toxic visions that link autism to horrors that are not scientifically supported, there would be little point in walking the planet. I do it though most of all in the hope that no little human ever is written off by their parent before they even got a chance to show them in a way that made sense to them that they did indeed love them.

It’s not news to me the world views me as strange and bizarre. There are worse fates than not fitting into a world that has some pretty weird values though. The largest good I am capable of is making people wonder if they are right about what autism is so I try. If people can’t find my message in a sea of words I am sorry but I have to try.

The world is a horrible place to go about in any sort of an obvious different way as it is but I don’t really care about changing the world as a whole. I just have to hope some parent of a young child does wade through my clumsy words and question. In real life I have been there to make people question notions they otherwise may have believed in destructive ways, but in theory you can change more minds on the internet. It seems largely a theory right now as I don’t think I have seen one change in a measurable way through my writing on my blog.

I say young child not because I am confused about the longitudinal nature of autism but because parental fear and misconception needs to be altered before it can do incredible amounts of damage to both groups. I cannot see as a type as the tears that started when I began this document have been a tad unrelenting. You can come to terms with damage like knowing for most of her life your mother doubted your ability to love but you can’t run a nice scan on your brain the way you can your computer and fix the impact of that.

When groups set out to make me less human for profit, at this point in my lifespan on some level I wish they were correct. It would hurt so much less if I was as completely lacking in common emotional ground. I may show it in different ways but I am very much human. My life is not less valuable and it darn well isn’t something for people to profit off of demeaning.

The uncomfortable truth is I was barely an adult before I had to think that this world could only be made better for the next generation of autistic people. Those of us emerging into adulthood in an era when only the classical looking were being labeled at all were already shell shocked by a lifetime of narrow misses with presumed incompetence making some horrific things possible.

When I see the gains that were made for awhile being erased so that pretty new children are subjected to therapies and views that we keep hoping were relegated to the past, and this erasure isn’t even being fed by science but by unethical fund raising yeah I will rant. I don’t like it when words hard come by are dismissed as one since I know when I have been. I am only sorry my message may get missed in a real rant.

This in case anyone is wondering isn’t rant but my own uncomfortable truth about what it has meant to be autistic. The most uncomfortable truth in my past. The most uncomfortable truth in my present is that people still think these things. I’m not that great at throwing myself into the gap created by different neurology clearly but I do have to try.

I won’t stop as long as there are people anywhere using disability of any kind to justify those people not being allowed to live, or having lived being described in ways more suitable to plagues and natural disasters. I am stubborn that way. My tenacity in the face of what others would take as defeat may be the best gift of my autism.

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3 thoughts on “Why I Keep Trying in a World that Would Prefer I Don’t Exist.

  1. When I get accused of going on and on about something I’m generally using writing to try to process something that was hurtful and insulting and shocking. I am trying to bridge a gap between how I see myself and how another person sees me. But sometimes that can’t be done. Still I find myself writing about the same things over and over again, putting them in different contexts, in an effort to detoxify them.

    I knew a boy when we were both around six who made rockets. Not every six-year-old could put that together. I don’t remember him talking much but the rockets were impressive.

    My mother stopped taking me to visit him for some reason. When I was in sixth grade he turned up in my school with social problems and was widely labeled as “retarded,” by children who could not have made a working rocket if their lives depended on it.

    What you describe of that video is truly cruel. These people sound like they suffer from Munchausen by proxy. The evil demon Autism stealing your children! Let’s make this seem as bad as we can, that’ll really help! Jerks.

    • I don’t have much alternative but to process the world through writing. Actually processing a cruel and mocking world while living in it won’t be happening in my life time.

      I think that’s true for most people who write though just perhaps in my case I know this about myself.

      If the world had improved overall in how it treats people with disabilities I wouldn’t feel any urgency that does, often rob me of eloquence. It hasn’t. The words have changed but the gut level experience of living in a world that values sameness way too much is still horrifying and in many ways getting worse.

      I just don’t really understand the whole reasoning of focus on the negative. Life has enough hurt and joy in it to not increase the hurt without throwing in some joy. I never deny the difficulties inherent with being autistic including the insurmountable barrier of not actually knowing what it is like to be in a typical brain.

      I am thrilled to see groups that promote acceptance on a level a person shouldn’t have to feel thrilled about. That they are often shouting into a wind controlled by the must control the message about autism people, is too bad. No one needs to spend energy on this.

      In a perfect world people would concentrate on how we are the same.

      • Brilliancies seem to come with deficits. We live in an unfortunately competitive culture that encourages envy, and the best way to stick it to a person who has brilliancies is to attack them for their deficits.

        I wonder how many non-communicative autistic people could reveal their brilliancies if they were less judged, and if the culture encouraged more openmindedness about what constitutes communication.

        I much prefer writing to speech, and since I’ve become a hermit and sunk into the Internet, I expect part of my brain has remapped from speech to typing. But why not ASL, if that’s what works for you?

        When I was in my teens, we lived with a guy who had a history of teaching deaf kids and in some cases worked with blind and deaf kids. He would regularly launch off into impromptu hand language at the dinner table, and encourage us to participate in inventing gestures. I loved this because it challenged the idea that there is only one way to do things.

        We should not have to focus on how we are the same, we should just know these things by heart. We should know that they are always there if you only know how to look for them.

        But it is hard to feel similarities with many people, for me, because most people seem to me to be acting. I never can tell whether they are consciously doing this or whether they just think that’s who they are. And I wind up feeling like I’ve been cast in a play without having my role explained, or even asked whether I want to be in this play.

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