Random Social Tip #3

Ok, this one is actually not so random. It is, in fact, directly connected to RST#2, but important enough that I decided it deserved its own post.

So! Random Social Tip #3 is: Shut up and listen.

Ok, this particular tip is important in many different contexts (and maybe I’ll write about more of them someday) but in this instance, I mean it in terms of social connection and conversation.

In my last tip, I talked about the importance of asking questions to show interest. Well, after you ask a question, it is equally important to be quiet and listen to the answer. Now, admittedly, this is not universal. There are people out there who like noisy, fast-paced conversations with words flying around everywhere.

Thing is, I am not one of those people. And there are many many people out there like me, who also do not do conversation that way. If you want to talk to us and have it actually be a conversation rather than you just talking away, you absolutely have to take the time to be quiet and listen.

Sometimes I see people talking about how autistic people often need time, time where you are not talking but waiting, to respond to a question or comment. So I thought I would add a little bit about what is going on in my head when I sit silently for a little bit before answering a question someone may have asked me. First of all, as I tend to talk about, words push on me. When a person is filling the air between us with lots and lots of words, I feel pressed upon and shoved away. Before I speak, I need to wait for some of those words to clear so that I have room to speak and breathe. And I’m sure to a person who does those noisy, fast-paced conversations what I am saying here makes no sense. But sense or not, it is my reality and this is what I need.

Also, I can either listen to you, or I can process what you said, come up with a response, and get that response to my mouth. I absolutely cannot do both at the same time. This leaves us with two basic options – either you give me some quiet space while I do that processing so I can answer you, or I tune you out for a little bit while I work on that processing and replying. The second option is absolutely terrible. Not only is it generally considered rude, but it is difficult, stressful, and painful for me to do. If I am in a situation like that, I will often resort to writing what I have to say, just because speaking it is so difficult. Yet for some reason, some people just insist on constantly talking. I’ve even had people be clearly waiting for a reply, expectantly looking at me, while continuing to talk and talk and talk. In the meantime, I was waiting for them to stop talking so I would be able to reply. This is a frustrating situation. Please do not be one of the people who creates it. Remember to shut up and listen.

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The Gruen Effect

I just recently read something about the Gruen Effect (or Gruen Transfer) that got me thinking about how I seem to work, and wondering if the Gruen Effect operates differently with autistic people.

So before I go any further, I want to ask you – what is it like when you go shopping? How well do you stick to your plan?

Ok, onwards to the post. First of all, let’s talk about this Gruen Effect thing. I actually remember learning about it (or, well, an aspect of it) in school back in the 90’s, but I guess until I was reminded of it I didn’t really think about it since. Basically, apparently when shopping, a fairly common thing to happen is to lose track of what one is shopping for, and grabbing extra things that one sees around. Stores now are often designed to encourage this and take advantage of it. When in school, the thing that my teachers talked about was specifically grocery stores – how they are designed in many different ways to manipulate your shopping experience and encourage impulse purchases. I don’t actually know how common it is for people to grab lots of extra things, but various things I’ve read seem to indicate that it happens a lot.

What I do know, though, is how I shop. And this Gruen thing does not seem to apply to me at all. AT ALL. When I go grocery shopping, I do need to bring a written list with me. However, this is because if I don’t, I just won’t get anything, or I’ll only get a very small number of things that I can remember we need, but anything I don’t remember I don’t get. And I don’t get extras.

When I do go in with a list, I ONLY get what’s on that list. I will, maybe, get some things not written that I simply know need to be gotten every week, so I feel less need to rely on the written list to get it. But otherwise, if we need something and I didn’t write it down, I don’t get it. This has actually happened to a fair extreme a few times. Sometimes we need milk, but I forgot to write it down. When going into the store, I might remember that I need to get milk, and make a mental note to get it. If I don’t write it down immediately, though, I ultimately won’t get milk. I will walk right past the huge, impossible to miss dairy display because I am so focused on my written list that I can’t remember anything else that I might need.

What’s really telling to me, though, is what happens when Nee and I go grocery shopping together, as opposed to me going on my own. When we go together, we wind up getting a LOT more than what was on the list. Nee will see things and go “hey, that looks good!” or “we could use this!” or “hey, let’s make a dinner out of that” or whatever else. Also of note, when I am alone I never, ever, grab myself impulse candy in the checkout aisle. When Nee is with me, I sometimes will, but generally only after Nee suggests it, or I watch Nee grab candy for themself.

Oh, and we do this in defiance of typical stereotypes, as I am female and Nee is male.

So that got me wondering if there’s something about me that means I operate differently. Maybe it’s an autistic thing. I couldn’t actually find anything in my initial googling, so I’m left to wonder. Which is why I’m asking you – how does shopping work for you?

How Do I Adult: Large Tasks

In my How Do I Adult series, I do my best to break down tasks that might seem large and overwhelming into small, bite-sized, easily understood portions that can be taken one step at a time. Knowing how to break down tasks like that is a skill unto itself (I know, because it is a skill I have not always had), and it occurred to me that it could make a How Do I Adult post unto itself.

Disclaimer: I’m not sure how this post is going to go. Trying to explain how to break things into pieces is actually kind of challenging, but I am going to do my best.

I’m going to use a couple of examples to walk through this: cleaning the house (which is generally a huge task for everyone) and raking the leaves (which many people consider an easy task to figure out, but not everyone).

So let’s say you have decided that you need to clean your house. This is a huge, overwhelming task. So you try to break it into smaller parts. Thing is, the task of breaking up the task can also be huge and overwhelming. There is just so much involved! How do you put it into smaller pieces that make sense without missing things?

My answer to that is to start with big chunks, which can each be broken into smaller chunks, which can again be broken into smaller chunks, and you can keep going until each task size is manageable. So for a house, the big chunks might be rooms. Bathroom, bedroom, living room, kitchen, etc. Pick one room, and figure out the best way to go about cleaning it.

Some people go by surfaces – clean a desk or a dresser or a bed, and clean surfaces one at a time. Other people might go by type of task – throw away trash, then get laundry together, then put away clutter, etc. For a bathroom, you might go by bathtub, toilet, sink, etc.

So we’ve broken it down to rooms, and items in the room. The task in front of us is cleaning the shower and tub. This can reasonably be called a single task, which we can break down into individual parts. These can be broken down into bringing together the tools needed, actually doing the cleaning with those tools, and then putting the tools away again. For something like this I may try to think through the process of cleaning and jot down the various tools/cleaners needed so I don’t forget anything only to realize I need it halfway through.

Another aspect of breaking down a task into manageable parts is figuring out how much is actually manageable. A friend of mine, Laura M, has a number of autoimmune disorders as well as an arthritis. Much of her life involves figuring out how to make tasks manageable for her, and she gave me a lot of wonderful information. For her, even a “small” task like raking the leaves can be large and unmanageable.

There is also the question of just how small of pieces you need the task to be broken into. Some people do fine with just “rake the leaves.” Other people will need it broken down a bit more, into gather tools, rake, bag, haul to curb. For yet others, it may need to be broken down even more. For instance, “gather tools” might need to become a number of individual tasks like take any necessary medications, put on appropriate clothing, take out rake and bags (assuming you are bagging your leaves).

For all tasks, from “clean the house” to “rake the yard” you need to decide how much you can reasonably do at a time or in a day and plan accordingly. This is not simply a matter of time, either. It is a matter of your physical or mental capacity, of sensory stimulus, of what how much you can do at a time before getting tired or overwhelmed. Basically, it’s about your spoons. So for my friend Laura, who has a number of physical challenges, she might need to break up the yard into quadrants, and then rake, bag, and haul to the curb one quadrant at a time. She may only be able to do one or two quadrants per day.

If I were going to rake a yard, the primary limiting factor would probably be ambient noise. I am very sensitive to sound and would need to either pick a day when it’s quiet, or if I can’t do that, take frequent quiet breaks to recover from the noise. Or, of course, wear earplugs or listen to music. Earplugs bother my ears, but for some reason ear buds for listening to music are ok.

Another thing to consider is the tools you want to use for breaking down tasks. Personally, I like to go into google docs and make lists. I start writing down what I need to do, and what is necessary to do them. I like to do this digitally because while I am in the process of writing, I tend to remember thing in random fragments or flashes of images. It’s helpful to be able to freely edit my lists and add to them as I think of things. Plus, since I never seem to be able to remember a full list all at once, it’s helpful to have it all written down for reference.

Ultimately, remember that figuring out how to do a task is often a task in and of itself, and it can be very useful to treat it as such. Approach this task thoughtfully, and work through it a piece at a time. Remember: big chunks, then smaller chunks.

How do you figure out how to accomplish big tasks?

Ramble on Stimming

This post might be a bit unfocused. We’ll see how this goes.

I’ve seen some disagreement in some of the autistic spaces I’m in around the idea of “stimming is communication.” Apparently some of us are really against that idea. It’s rather made me want to weigh in with my take on the matter.

And my take is – stimming is communication, in the same way that other forms of body language are communication. Some of the arguments against stimming being communication is that sometimes (or many times, or often) stimming is done without the intent to communicate. Apparently to some people, that means it’s not communication.

I disagree. Humans communicate all the time without necessarily putting intent behind it. Over on the neurotypical side, people generally agree that body language is communication. And sometimes NTs will put deliberate effort into their body language, so that it communicates something that they choose. However, many times body language just happens, without forethought explicit choices involved. And when that happens, it’s still communication. NTs like to talk about how up to 75% of communication is nonverbal – and they’re meaning that for themselves. Their own communication is dominated by nonverbal cues. Facial expressions, body language, tone, things like that.

I am firmly of the opinion that stimming is (among other things) body language. When an NT laughs, they are probably not thinking “I wish to communicate my amusement, so I am going to make this particular sound to convey it.” Laughing is simply a natural result of amusement. Same with stimming. Whether I’m flapping my hands because I’m excited or rocking because I’m overstimulated, they are natural results of my mental state. They are also expressions of my mental state, and, among the various things they do, they serve to communicate that to others.

When I say that stimming is communication, one of the things I mean is that NTs should learn to pay the same kind of attention to it that they do to other forms of body language. I am saying that all behavior is communication, and stimming counts too. I’m saying that stimming is another form of body language, and that is one of many many reasons why we should stop trying to stamp it out.

When I stim, I am generally not thinking about communication. I’m excited or happy or stressed or overstimulated or maybe just needing to rock. Frequently I’m alone, so communication doesn’t make any sense. However, I still say that stimming is communication, the same way that facial expressions are communication. I say this because intent or not, they can communicate information to others, if there are others around who know how to read it.

Random Social Tip #2

Continuing in my experimental series of brief social tips!

Remember to ask questions.

I gather many people struggle with this one, including many allistic and neurotypical people. As such, I just want to put it out there – ASK QUESTIONS!

Ok, context might help. Specifically, if you are trying to get to know someone, or even just have a conversation, always ask questions. This is especially true when talking to someone who is on the quieter side. Louder more talkative people seem to be very good at just volunteering lots of information and talking on and on about whatever it is they have going on. Not everyone is like that, though, and if you want to get to know someone who is more introverted or generally quiet, ask them (us. or me) questions!

A good way to accomplish this is to start generic and gradually get more specific. Start with the broader questions like “how was your day?” or “what sorts of things do you like to do?” or “what did you do today?” Based on their answers, ask more questions, getting more specific. So, for instance, if someone asks me what I did on any given day I might say that I went horseback riding, or did some writing, or made something. I make a point to not go into more detail because I know my propensity for monologuing and I try not to unless a person shows interest. So if a person is interested in getting to know me, the best way to do so is to engage me with the things I like. You don’t have to do them yourself, just ask me questions about what I did, how it was, how things work, what skills I need, etc etc. Ask questions, and then ask more questions. For instance, I have not played minecraft in a very long time. Nee, on the other hand, plays every evening. And every evening I sit with him and he’ll show me what he’s built and I’ll ask about what he’s done, ask more questions about what I don’t understand, ask yet more questions to get more detail, etc. This also works vice versa – he engages with me in terms of my writing and my crafting. We each make a point to actively talk to the other one about what we like to do, even if we don’t share that particular activity.

I say this especially because some people seem to think that the best way to get me talking is for them to talk. And if they do enough talking at me, eventually I will talk too. It does not work that way – the more you talk, the less I talk. The end result is that some people will talk at me a whole lot, and even be very happy with the conversation, but ultimately learn pretty much nothing about me even though they claim to want to do so. Really, it’s counter-productive.

I try to ask people questions too. I find it is a skill that gets better with practice and I often need to consciously remember to ask questions, rather than assume that people will talk if they have something to say. People like knowing that I am interested in what they do or say, and one important aspect of showing that interest is to ask about it.

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.

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.

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.

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?

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.