Not a Cure

The cure vs. not cure battle seems to be continuing to rage on. Ages ago I made a post with my take after someone accused me of not needing any kind of help, since I am against being “cured.” It seems that to some people, it’s a binary. Either we’re just fine as we are and don’t need help or treatment, or we need to be cured. The reality is, of course, more nuanced, with different individuals needing different amounts and different types of help and treatment.

So, looking at the cure stuff, it seems that there is a pretty big disconnect between the broader autism community, and how some parents think of it. See, to autistic adults, most of us see autism as an identity. As a neurology. To get rid of the autism is to fundamentally change who we are.

I gather, though, that to some parents of autistic children, they see it differently. See, autism is diagnosed by behavior. While scientists are slowly researching how autistic brains are different from neurotypical brains, it’s still an area that we don’t really understand, and we are very very far away from using that kind of information in diagnosis. Behavior is all we have. So “having autism” is, in a sense, synonymous with “being diagnosable.” Of course, there are problems with that logic, and one of the big ones – the one I am wanting to talk about here – is how some people use it for their idea of “cure.”

Basically, for some parents, “curing” their child only means making them no longer diagnosable. And making them no longer diagnosable means making them get rid of the behavior used for diagnosis. And when I think about that, well, it’s quite distressing.

See, I could probably learn to stop stimming. But it would leave me constantly tense and uncomfortable, it would eliminate a huge part of my body language, and I would have to keep a fairly significant portion of my attention dedicated to preventing stimming. Sure, it would reduce how diagnosable I am, but it would not better my life in any way. Quite the opposite.

If there were enough external pressure, I could probably succumb to not showing my sensory issues. I could choke down food that makes me gag (well… maybe. The gagging can get pretty bad). I could sit in silent agony as clothing tags dug their way into my skin. I could learn to not flinch at painful lights and noises (which, actually I did learn that one a little. It’s not a skill I particularly enjoy, and I am working on getting rid of it).

I could take intensive social skills classes. Which, actually, wouldn’t necessarily be bad. My social skills are way behind other people in my age group, and this is very much an area where I need help. As I’m pretty sure I’ve written about before, my ability to handle parties or similar forms of group socialization is approximately nil. I just can’t do it. So teaching me to handle stuff like that would be good.

On the other hand, not all ways of teaching “social skills” are about bettering an autistic person’s ability to actually interact. Sometimes they are about hiding our weirdness. Things like forcing eye contact regardless of the pain involved. Or forcing us to touch people even if it makes us feel sick or panicked.

So if my childhood had included all that kind of “help,” and somehow I learned to cope with that stuff without more or less constant meltdowns, I might have stopped being diagnosable. But the thing is, I would still be autistic. I simply would have learned how to hide my autism. And it wouldn’t even be able to last long term. As life continues, as the challenges of life increase, it would take more and more effort to maintain the facade. My ability to do anything else would diminish more and more. Eventually, the house of cards would crumble. Inevitably.

Making the autism invisible does not get rid of it. All it does is make it so neurotypicals can happily pretend it isn’t there.

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Diversity

So I guess I’m feeling kind of negative. This post could easily be called “things I despair of ever seeing in my lifetime.” These are points about civil rights, diversity, and representation that I would like to see, but are so far from happening that many people aren’t even aware of them, or don’t see them as things we should care about.

~ A politician running for office including disability rights as part of their platform.

~ A campaign to increase minimum wage including special minimum wage as part of the overall issue.

~ A visible campaign that includes politicians backing it to get rid of special minimum wage entirely.

~ Actually getting rid of special minimum wage.

~ A person who is too disabled to work being a protagonist in a tv show.

~ A person who is too disabled to work being a protagonist in a game.

~ A TV show with an officially autistic main character, who is portrayed in a positive light without relying on stereotypes.

~ A main character with a variety of intersectional difficulties. Such as disabled AND female AND a POC.

~ Disability rights being broadly seen as civil rights.

~ A political including marriage equality for people with disability as part of their platform.

Ok, so we do have a few partial wins with some of these. We have Professor Xavier in X-men, who is a disabled protagonist. That’s awesome! However, aside from the wheelchair he is as normalized as possible, being white, male, and straight.

We also have Alternate Astrid, from the TV show Fringe. A woman of color who is officially autistic, and her autism is simply part of who she is, rather than central to the story. However, she is a very minor character and we do not see her particularly often.

More on Fringe – they have a number of characters with differences, and again, those differences are never a central story plot, but simply part of who they are. That’s awesome. Again, though, they are always side characters. Main characters are still on some plane of “normal.”

Mad Max, the character Furiosa, who is a woman, kickass, and a fetal amputee. Actually, this one is pretty awesome and her existence as a protagonist is a HUGE deal

Diversity and representation are important. Diversity of color, gender, and sexuality are definitely important, but they are not the whole picture. Diversity of neurology and (dis)ability are also important, but are still not really seen as serious issues of discussion. A while I am seeing baby steps in terms of representation, it seems as though issues of legal equality and civil rights are still only espoused by small numbers of people who are not particularly well listened to.

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How functional am I?

I’m told I’m high functioning.

As far as I can tell, mostly this means that for short periods of time I pass for normal. When I’ve saved up my spoons and I’m not overloaded, if a random stranger glances at me they don’t see anything unusual. So, to the people who use phrases like “high functioning” and “low functioning,” I’m high functioning.

Now, intellectually, I know that’s full of bunk. I know that “high functioning” means “we’ll ignore any help you need” and “low functioning” means “we’ll ignore any strengths you have.” I’ve seen it in practice many times, and I’ve had people deny my difficulties or insist that I’m just “quirky” based on nothing more than their idea that I’m “high functioning.”

But turns out that as much as I know this way of thinking is incorrect, as much as I understand that functioning is not linear, it turns out that it has burrowed into my brain deeper than I ever realized. It pops out at me and leaves me struggling with… I’m not even sure what.

A little backstory – I was diagnosed as an adult. People can make some very inaccurate assumptions about my childhood when they hear that, though. Basically, by the time I got into kindergarten, it was unmistakable that something was wrong with me. However, no one knew what. Long story short, things tended to jump between trying to figure out what was going on, and just treating me as though my failings were my fault and I’m just weak. I know now what was going on and why, but those messages don’t go away so easily.

Now, a little while back, after a lot of work and many incremental steps, I reached the point of being able to go grocery shopping on my own. It was a huge accomplishment for me and I’m glad I’m able to do it. This involved a lot of working both on driving independently (very difficult both in terms of sensory input and real-time processing) and on being able to handle the intensity of the grocery store on my own long enough to get the groceries.

This is where it gets rather shameful. Where my rather treacherous brain betrays me. The grocery store I go to employs some people who seem to have intellectual disabilities. They are definitely not the kind of people who can pass for normal the way I can. If someone who rates people by functioning came on by, they would surely say that I am higher functioning than some of those employees.

Yet those “lower functioning” employees are holding down jobs that would send me into screaming meltdowns within a matter of days if I tried to do them. And sometimes, when my brain is being uncooperative, when all that inspiration porn I’ve been exposed to and all those messages of moral weakness I grew up with are echoing loudly in my ears, I wonder why they can do it and I can’t. I think I must just be weak or lazy the way people insist people like me must be. I’m failing to “overcome” my disability the way we’re supposed to in order to be worthwhile.

I know that this is wrong. I know that there are many, MANY errors in my thinking. I know that functioning is neither linear nor one dimensional. I know it’s only reasonable for people who are weak in ways that I am strong, to also be strong in ways that I am weak. I know that this is how it works. But sometimes, on a gut level, it seems I forget.

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Talking about horses again

So where I ride, there’s this one horse I want to talk about a bit. His name is Stitch. Stitch is fairly old, fairly creaky and stiff, and does not have a huge amount of energy. He won’t win any races or fly over jumps, and when riding him you can’t push him too far because he just only has so much in him.

And it’s SO WEIRD to write about him that way. Because at my barn, that’s just not how we talk about horses. We don’t bother to spend time talking a lot about what a horse can’t do, because we understand that every horse has something that they *can* do, and that’s what we focus on.

Overall, we do not rely on horses in our society the way we did in the past. We don’t really need horses for our everyday lives. Yet even so, there are still a solid number of tasks out there for horses to do. There are pulling horses, jumping horses, running horses, barrel racing horses, therapy horses, dressage horses, and probably more. Many of those jobs cannot overlap, so a horse that is very good at one job would be terrible at another. We, as horse people, understand that it would be absurd to choose one arbitrary standard by which to judge all horses, so we don’t do that. We don’t even talk about how we should not judge horses that way, because it is a non-issue for us.

So at my barn, when we talk about Stitch, we talk about his strengths. And yes, he does have them. We’ll talk about how he’s sweet and kind and gentle. We’ll praise him for never losing control and being disinclined to spook. We put beginners and brand new riders on him, because he is a wonderful lesson horse, taking things slow and gentle for people who are first learning. He’ll carry disabled riders in his role as a therapy horse. He is very very good at those things.

It just makes practical sense to find each horse’s strength and focus their job around that. To do anything else just be, well, ridiculous.

So why is it so hard for us to do that with people?

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Autism changed my religion

I occasionally talk about autism and religion, but not very often. I tend to believe that religion is incredibly personal – my beliefs are mine alone, and I have no interest in convincing other people to believe what I believe. So while my diagnosis of Asperger’s Syndrome had a profound impact on my beliefs about self and soul, it kind of feels awkward to talk about it here. Nonetheless, I think I’m going to anyway.

So to go over the beginning – it all started with my diagnosis, then with my reading, as I do. I learned that autism is neurological – it’s in my brain. I read about a number of studies showing structural differences between autistic brains and neurotypical brains. To put it simply – autism is physical. It’s right there in the structure of the brain.

Then, not long after, I heard someone in my religious group talking about the (fairly typical, in my experience) religious belief of, basically, “you are your soul, you have a body.”

Suddenly I realized that this common belief, one I grew up with and did not really question, did not fit me anymore. I do not see my autism as something simply attached to me, like a body that a soul happens to be sitting in at the moment. Autism is intrinsic to who I am. Which means my body is intrinsic to who I am. I cannot separate the two anymore.

At first this just caused confusion and some level of angst. I looked for opinions from other people, but I was still struggling to put the concept into words. Also, I was friends with many atheists who simply didn’t believe in souls at all and took the questions as a “nature vs nurture” thing. That was not what I was trying to get at at all.

Now, just so I will hopefully not be too confusing – my beliefs are fluid. They have been ever since I went away from christianity and towards paganism. I have notice that many people find the fluidity of my beliefs confusing, as well as the peace I have made with the fact that what I believe now will change over time, not always in predictable ways. For me, a change in my beliefs is not painful, it is simply part of life.

One of the first major changes was moving from a transcendent view of reality – where the physical and the divine are separate, towards an immanent view of reality – where the physical and divine are together as one. Since I cannot separate myself from my body, perhaps I cannot actually separate my soul from my body either. Maybe that’s not how it works. Maybe I’m not some coherent soul going from body to body through rebirths, or into some kind of afterlife with a deity. But then, what am I?

Well, my body is almost like a wave of matter through time. I am made up of the matter and molecules that I consume (and convert), and those atoms and molecules and cells of my body are constantly rotating through. I am always losing molecules (for instance, the outer layer of skin flaking off, as it does, and my body generating new skin beneath, as it does), and I am always gaining new molecules through my food and drink. Yet while the matter itself is constantly coming and going, the structure of myself remains much, though not entirely, the same. My brain continues it’s autistic structure, my skeleton stays the way it is, my basic layout does not change.

So now I seem to believe that my “soul” (however much I believe in a soul) is much the same. It is simply the current iteration of “me,” made up of… well, I don’t know yet. The current collection of some small portion of all that is sacred and divine. What are souls made of anyway? I also seem to have some version of panentheism going on. Everything is god – including the gods (so yes, I am still a polytheist as well). Everything is sacred, everything carries a portion of the divine. The portion of me that is divine is, basically, my “soul.” And perhaps when I die, my soul will disperse into the greater universe the same way my body will decompose and return to the earth it came from.

All that change, from one little (huge) diagnosis.

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There is no wind in my sails

It’s about the Franklin Institute again.

As a quick refresher, a while back I went to the Franklin Institute on their Sensory Friendly Day. Long story short, it went badly. VERY badly. So I wrote about my bad experience and went on with my life.

Until, that is, Adrienne Kimball, listed on the website, emailed me about my blog post. You can read about that email over here. Basically, she addressed some points about the day, and invited me to go back to meet with her and talk about ways to improve the exhibits and better warn people about sensory-unfriendly areas. I thought this was pretty awesome, and decided to take her up on it.

But then… she ignored me. I tried to email her and set things up, and got absolutely nothing in reply. Since then I’ve felt… embarrassed, honestly. Like she lied to me and I was naive enough to believe the lies. I got my hopes up and thought that maybe, FINALLY, someone actually wanted to listen to autistic adults and hear what we have to say, but then it all turned to dust.

Now I feel like I’ve run out of gas. I’m just a foolish, naive aspie who has delusions of actually Doing Something Good. I’ve been trying to remind myself of the times when y’all have told me about how my writing has helped you, which is honestly WONDERFUL to hear, but I still feel really foolish about this whole museum thing. I’m trying to take a deep breath and keep going, but this feeling of being stalled isn’t going away. So I am doing what I do best, and writing about it.

What do you do when you hit something like this?

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When obsessing goes overboard

The image above is of my latchhooking project. It’s the biggest one I’ve ever done – I’ve been working on it for a month, and have at least another month of solid work to go. The day the image was taken, I had done 7,921 stitches and had 8,010 stitches to go. It’s HUGE.

I tend to obsess over my crafting projects. I know that I do this; I am prone to obsessing and I find it very pleasant to get consumed by a project for a month or two until I finish it. That said, until yesterday I did not know just how obsessed I get.

I actually haven’t written much for my blog in that time. I have either written off-the-cuff posts about things that were pressing right then or relied on pre-written posts in my slowly dwindling pending folder. The reason for this is that I’ve been latchhooking. All my “creating stuff” time is spent on that project.

Yesterday* was supposed to be different, though. See, my hands have been hurting. Constantly. For days. I had decided that it would be prudent to take a day off to give my hands a chance to heal.

It didn’t work.

I fidgeted, I flailed, I twitched, I browsed the internet, I watched TV, and eventually I picked up my project and started working. Over 400 stitches later I realized that I had done the opposite of taking a day off. I realized that my obsession seemed to be a wee bit out of my control. I had even kept putting it down, talking about how I meant to take the day off from it, and then picking it back up again.

The reason I am writing this post instead of working on my latchhook more is that last night Nee took it away from me,** because seriously my hands need some time off. Even typing hurts. I washed the dishes today, and that was downright painful. Yet still, it’s challenging for me to think about doing anything else. Even the act of writing this post is kind of a cheat – I’m writing about doing latchhooking, and about thinking of latchhooking.

All of which is to say, apparently I will obsess to the point that it will become an actual detriment to my health. I am 34 years old, and I still sometimes need someone to help me take care of myself, because overcoming an obsession to do something is incredibly challenging. My desire to work on my project is greater than my desire to not be in pain.

This is really quite an interesting learning experience here. I guess at some point I’m going to need to think up some strategies for balancing an obsession to do a craft, and taking care of myself.

Follow up: Ok, today is Wednesday. I am still not latchhooking. My hands are mostly better, but there is still one specific spot on one finger that continues to be painful. I’m thinking I’ll start back up again tomorrow, and anticipate getting consumed by the project once again. Hopefully my hands won’t complain too much.

* I wrote this post on Monday, but am posting it today.

** consensually. Nee does not try to dictate what I do with myself.

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The Dunning-Kruger Effect

So I do a lot of thinking about my social skills. I think about where they are now, I think about where they were in the past, I think about what I want to learn and where I hope I’ll be in the future.

One thing I notice when I look back is that I seem to have been subject to the Dunning-Kruger effect rather a lot.

So before I go further, let’s talk a little bit about what that actually is. Basically, it’s a form of cognitive bias where a person is both really terrible at something, while simultaneously being unaware of how terrible they are at that thing, even to the point of thinking they are good at it.

Apparently there are four main points in play here. Basically, someone who is really incompetent at something will often:

  1. fail to recognize their own lack of skill
  2. fail to recognize genuine skill in others
  3. fail to recognize the extremity of their inadequacy
  4. recognize and acknowledge their own lack of skill, IF they have been exposed to training for that skill

And… yep. That’s me in a nutshell, at least when it comes to social skills. In the past, I honestly had no idea I was so clueless in my ability to socialize, related to others, make conversation, etc. I even, at times, thought I was good at it (I wasn’t. oh gods, I really really wasn’t). I am increasingly finding that the more I learn, the more aware I become of being so utterly clueless, at least of anything beyond the basics.

I am sufficiently clueless that I don’t even know what good social skills actually look like. I mean, I can see some people are obviously socially successful, but I don’t know how to learn from their example or apply whatever they are doing to my own life. I cannot differentiate between good advice and bad advice. Socially speaking, I am extremely vulnerable and I always have been, just because of how much I don’t know. Sometimes I worry about being taken advantage of, because as soon as I am criticized in a social arena I will back off and apologize, no matter what. Because often, I did fuck up somehow and I just don’t know how. But it means that there could be times where I don’t fuck up, where someone else fucked up, and they can blame me anyways because I don’t know the difference. This is something that worries me, because I cannot make myself any less vulnerable than I am.

That it is so possible, so probable, so be so clueless of my own lack of skill really does worry me. So now I try to offset this effect by being as aware as possible of my own incompetence. It’s a lot easier to learn when I know I have a lot to learn and can remain open to said learning.

I’m honestly hoping at least a few of you will be able to relate to all this. And if you can’t, remember that this Dunning-Kruger effect is actually a thing. Which is to say, try to be patient with me, and maybe with others who are like me. I am trying, but it’s super hard.

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Franklin Institute Follow Up

A while back I wrote about an attempt to enjoy a sensory friendly day at the Franklin Institute, and how it turned out Very Badly. To sum it up, since it was over a month ago now, I went to what was billed a “sensory friendly Sunday” at the Franklin Institute. However, it turned out that “sensory friendly day” actually means “sensory friendly morning,” but this information is not necessarily readily available. It isn’t even listed on their website’s page about the event. When I had gone into the electronics exhibit, a large tesla coil went off and, well, that was that. It was painful and horrible and completely without warning.

However, a while after I wrote that post, I actually heard from the Assistant Director of Museum Programs from the Franklin Institute! I wrote back asking permission to share her email in my blog but never did hear back, so I guess I’ll just try to sum it up. Her email covered three basic points.

  1. I had complained in my post that there was only one sensory friendly day every two months, which is not much. She pointed out that there is a lot of demand and competition for different programs and events, and they are happy that they can offer as much as they can. And… point taken. Not exactly delightful to hear (it can sound a bit like “take what you can get and be grateful!”) but honestly, that is sorta where I am at the moment anyway. And it IS nice that they are making an effort – not everyone out there is.
  2. She agreed that the electricity exhibit is a problem. “It is an extremely sensory-unfriendly experience, and based on your feedback, we can begin a conversation internally of how to better inform guests of what they will experience.” That’s pretty awesome, and I hope eventually they are able to make improvements. Heck, I’d be happy to contribute to that conversation, assuming I’d even have anything to add or would be welcome.
  3. The next sensory friendly day (morning) is September 13th, which is only two weekends away. She expressed a hope that I would try again, and if so, email her so she could meet me in person!

That last point is the one that I am most bouncy about. Meet an official museum person? To maybe talk about museum stuff? And sensory stuff? just… wow! I haven’t solidly decided to do so yet, but I think I should. Going on my own is still really hard, but if I can find someone to haul along with me, I think I would really like to try.

I’m writing this for two reasons.

  1. This is pretty cool, and I wanted to share. Yay for hearing from a museum person!
  2. I want your thoughts. What do you think of the points raised? Do you think I should try to meet her? If I do, what sorts of things would you like me to remember or keep in mind or mention?

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