Tag Archives: aspergers

It Isn’t “Just Words”

As I think most of us know, sometimes there is conflict between whether to use person-first language or identity-first language. Just in case you’re new, though, here is a quick rundown. Basically, person-first language means saying “person with autism” when referring to us. Identity-first language means saying “autistic person” or just “autistic” since we can generally infer that we are referring to a person. Now, I have already pretty firmly come down on the side of identity-first, so that’s not actually what I’m here to talk about.

Whenever I see this topic come up in autism spaces and people start to discuss it, inevitably someone comes in to declare that it doesn’t matter, it’s all “just words” and to generally scold everyone for caring about what words we use for ourselves. 

And THAT irks the crap out of me. It irks me more than person-first language, which I find very irksome indeed. See – it isn’t “just words” at all. It’s about what is behind those words. It’s about the intent, the meaning, what we want to communicate. 

Ultimately, we are not simply communicating a diagnosis. We are communicating our sense of ourselves, a concept of our identity. I mean, the entire point of identity-first language is to convey that this is part of our identity. I don’t tell people that my diagnosis is Asperger’s Syndrome (I was diagnosed before the DSM 5 came out), I tell people that I am autistic. 

That matters to me. It matters internally because this is how I think of myself. Autism is part of who I am, so I reflect that in the language I choose to use. It matters externally because I want to be seen for who I am, not for what other people think I should be. Anyone who cares about me or wants to get to know me should also know this aspect of myself, just as much as they should know about my love of cats or how much I craft or really anything else about myself.

Some people prefer to refer to themselves with person-first language.* While I personally strongly disagree with that, I do understand and respect that those people are still making that choice for similar reasons that I choose identity-first language. They are choosing language that reflects their internal sense of self and how they are choosing to view themselves. They view autism as something separate from themselves – a disorder that they HAVE rather than an identity that they ARE.

Ultimately, that is what is at the root of these discussions. Sure, it’s about the words, but it isn’t JUST about the words. It’s about what those words mean, it’s about how we view ourselves and who we are. So maybe don’t try telling people that they shouldn’t care. If you don’t care either way, then fine – I won’t tell you that you should care. I’m sure there are plenty of things you care deeply about and this one just isn’t on that list. That’s ok. But don’t try to tell other people that we shouldn’t care either. I care about my identity, I care about the language I choose reflecting my internal sense of self, and I care about how the people close to me see me. That’s ok too.

*For the purposes of this post I am intentionally ignoring the non-autistic people who try to tell us how we should identify. By all rights they are not a part of this conversation at all. Telling groups you are not a part of how they should identify is appalling behavior that deserves no attention at all.

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Social vs Medical Model of Disability

My favorite lens to look at disability through is the social/medical model of disability. I have recently been reminded that these models aren’t as universally known as I imagine them to be (I mean, I’VE known for years, so surely everyone else knows too, right? Yeah, that’s not how it works) so I just want to talk about it.

So, what does “social model of disability” and “medical model of disability” mean, anyway? In simple terms, the medical model of disability is the idea that disability is something wrong with the disabled person, and the correct solution is medical interventions to fix them. The social model of disability is the idea that disability is something wrong with society, and the correct solution is ensuring accessibility for everyone.

I have met/encountered people who fell hard on both sides of that divide. Personally, I used to be pretty firmly in the social model camp but now I think they both have their uses and their truths. 

Disability is a BROAD category. There are many ways and many reasons to be disabled, and so it seems to just make sense that there need to be a variety of solutions and responses to disability. Sometimes that will look like accessibility – ramps, mobility devices, communication devices, heck even just simple awareness that disabled people exist and are ok. 

Other times it will look like medical interventions. It can look like trying to fix what’s wrong. I firmly believe that it’s ok to be disabled. That disability doesn’t make you have less worth as a person, that the role of society is to take care of each other, INCLUDING those with disabilities. 

I also firmly believe that if you have a disability/are disabled in some way, it is ok to want to be better. It’s ok to seek out treatments and it’s ok to want a cure. 

I firmly believe that both of these concepts can coincide. That they do not have to contradict each other and it’s up to each individual to navigate what the right answer is for THEM. 

For me, specifically in terms of autism, I don’t want a cure. I have spoken about this a lot. I want accessibility, I want support, I want a world that accepts me the way that I am instead of demanding that I be someone else. Since my difference is fundamentally about how my brain works, “curing” me would mean turning me into someone else. The “me” who is writing this would no longer exist, and in essence be dead. Instead there would be some other person. I’m not interested in that.

But despite the accusations people have levelled my way, I am still in favor of treatment and help. I mean, not ALL treatment (Just Say No to ABA), but I do need help. 

I ran into a reddit post a while back that I think really highlighted this whole issue. A person with dwarfism talked about a limb-lengthening surgery that can be used to “fix” dwarfism, except that while it does lengthen one’s limbs it’s a very intense surgery that often comes with any number of negative side effects. Apparently in Italy, limb-lengthening is simply considered standard treatment for people with dwarfism, with no real thought given to the idea that maybe it isn’t the best solution for everyone. 

I want to highlight one particular part they ended their post with:

“What I did need was my legs straightened, and spinal decompression surgery – to mitigate pain and reduce numbness in my legs. Limb lengthening to me just seems like a barbaric, extreme measure to act as a band-aid for a society that refuses to be accessible or accepting.”

Here they advocate for both medical interventions AND social supports. For finding the balance between the two. 

Another aspect of this is because I believe we need both, and because I believe that society exists for people to support each other, social supports need to be socially implemented. It’s on all of us, not just disabled people, to ensure accessibility. This gets into a post I wrote ages ago about my own exploration of the concept of disability rights being civil rights, specifically centered around the idea of businesses with signs saying “disabled entrance in rear.” Or rather, about how upsetting all of that was. Basically, every single time I tried to talk to people about it, they were far more interested in EXPLAINING to me about how it just isn’t that SIMPLE and I need to UNDERSTAND and my question wasn’t fair and and and and and somehow my attempt to say “hey, maybe the concept of most people getting the main entrance but disabled people only able to enter from the rear isn’t great” was just never heard. Like, people weren’t even listening to me enough to disagree with me – they just weren’t listening AT ALL. It was a bad time.

I wonder if things have changed enough since then for the conversation to be possible. I’m honestly a little afraid to check. Last time was just so unpleasant. Still, maybe I’ll try at some point. I wonder if fb still does polls. Or maybe use google forms? Hrm. ANYWAY. 

This post has wandered around a fair amount. This is honestly mostly an exploration of my thoughts on the matter, plus just yet another person shouting about these disability models into the void in the hopes that just a few more people will hear. 

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Accountability and Autism

Getting straight to the point here – if you have caused someone (or multiple someones) hurt or harm, you have a responsibility to take ownership, apologize, and try to make it better. Even the purest of intentions does not negate this fact, nor does it provide you with absolution.

When I type it out it seems so painfully obvious to me that it shouldn’t even need to be said. And yet, there are people out there who disagree.

I stumble across people who think that saying “but I didn’t MEAN to hurt anyone” excuses them from any responsibility every so often and it always really bothers me. Recently, though, I came across someone who thought that with an additional specific autism modification. According to that person, an autistic person needing to take responsibility and apologize for any hurt/harm they caused, even if they didn’t mean it or understand, is just demanding that autistic people bend over backwards to accommodate NTs. 

It isn’t. That person is wrong. 

To be clear, autistic people do need to accommodate NTs a LOT. A WHOLE lot. Seriously, just so much. We adapt to NT social norms, we conform to NT body language, we change ourselves to make NTs more comfortable. 

This, though? Apologizing, taking responsibility, regardless of intent? Is NOT that kind of accommodation. It’s just being a decent human being.

And to be clear – NTs need to do this too. NTs are also capable of hurting others or causing harm without intending to or even understanding at the time that what they did could be hurtful. And NTs need to take responsibility and apologize when it happens. And yes, sometimes NTs are bad at doing that and it’s frustrating.

Now, the “understanding” aspect of this is definitely a complicating factor at times. There have definitely been times in my life when I’ve accidentally hurt someone and not only did I totally not intend to, but I was entirely lost as to what exactly it was that hurt them. It’s hard to take responsibility for my actions if I don’t even know what I did that was wrong. And it can be incredibly frustrating when I genuinely want to know – I don’t want to hurt anyone! But I can’t learn how to avoid it if I don’t know what I did! – but people aren’t willing to tell me or just insist that “you know what you did.” No I don’t! That’s why I’m asking!

Even so, even with all that frustration, it’s still on me. If I hurt someone or caused them harm, it’s still my responsibility to take ownership, apologize, and try to be better in the future. Even if I don’t know exactly what I did, I can at least apologize for hurting them. In fact, that’s often a really great step one if I want them to tell me what I did wrong. If I make it abundantly clear that I genuinely am regretful and I truly didn’t want to hurt them, I have found that people will be far more willing to believe me when I say that I don’t understand but I want to. And yes, part of this is deliberately communicating in a way that NTs will understand. The simple question “what did I do wrong?” without any padding will, to NTs, look like excuse-making or dodging responsibility. I suspect that when NTs say that, they really are making excuses or dodging responsibility. That, at least, would explain why they take it that way when autistic people say it. So I add padding. It helps.

I do that because for real – I don’t want to hurt people. If I do something that hurt or harmed someone, I really am regretful. If I don’t understand or know what I did, I want to learn so I can avoid hurting people in the future. You know, because I’m not a jackass. And because it’s my responsibility.

To make the usual analogy – it doesn’t matter if I intended to step on your toes or not. If I stepped on them and hurt you, I need to apologize and maybe look out for my feet better. To extend the analogy – maybe my feet are ridiculously tough. Maybe it never hurts me when someone steps on my toes, so it doesn’t occur to me that it might hurt other people. Nevertheless, it will hurt other people, and when faced with that it’s on me to learn, to do better, and to apologize to the people I hurt. 

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Can Autistic People Respect Boundaries?

Creative commons image by Nick Youngson

Yes.

Ok, that isn’t enough for a blog post. Before I get more into it, though – autistic people reading this will almost certainly already be entirely aware of everything I’m about to say. As such, this post is really targeted more towards allistic (non-autistic) people who might have autistic people in their lives in some way.

Also, I feel like I need a disclaimer here – there will, of course, be some autistic people who just don’t respect boundaries at all, in that there are some PEOPLE who don’t respect boundaries at all. There are many kinds of people out there, and not all of them are kind or respectful. Anyway, moving on.

To put it simply – the problem isn’t that autistic people don’t care about boundaries, the problem is that autistic people often don’t understand boundaries in the way that allistic people do, nor do we necessarily understand what people are trying to communicate to us when people try to communicate boundaries.

For some reason, many allistic people seem to think it’s rude to simply state a boundary in blunt terms. I once read a thread of people talking about how to get guests to leave when they have overstayed their welcome, and not one person had “I just tell them it’s time for them to go” as a suggestion. Instead it was all hints, clues, tones of voice, body cues, and one person even said she’ll get out the broom to start sweeping, sweep around her guests feet so they move, and using this technique literally “sweep” them out the door! I was so astonished by that whole thread! Why can’t you just tell your friends that it’s time for them to go?

In any case, as an autistic person, that is the kind of thing I’m talking about. I really need things stated to me VERY CLEARLY AND DIRECTLY, and that is definitely a struggle for allistic people. I can’t count how many times I have inadvertently overstepped a boundary simply because I didn’t know it was there. I’ve had people try to communicate boundaries to me with small hand-waves, with the way they walked, with the stance they took while standing, with verbal subtext, with eye glances, and really I don’t even know what else. At some point I started directly telling people that I need communication to be very blunt, that I need them to TELL me their boundaries so I can understand. People consistently assure me that they totally get it, they’ll definitely be direct with me, it’s cool.

Next thing I know, they’re incredibly angry with me because I was supposed to understand that a little hand-wave meant “stop hugging me” and really, that was TOTALLY clear on their part, I must have ignored it on purpose. 

Then I am in the awkward position of being both truly apologetic – I really am sorry! I didn’t mean to overstep a boundary! – and deeply frustrated. What happened to just telling me? I TOLD you that I can’t see those subtle forms of communication, and you assured me that you understood and it was ok! IT CLEARLY WAS NOT OK. 

I will absolutely respect your boundaries. I WANT to respect your boundaries, very much. But I have some difficulties in allistic-style communication, and this means I need you to just TELL me. Clearly, plainly, bluntly, even rudely by allistic standards. Because otherwise things tend to go from “so subtle I missed it entirely” to “explosion of anger” and I end up so confused.

Now I do want to put in a very important exception – the dating world. Bluntly rejecting or setting boundaries with men can be very dangerous to women. Sadly, we haven’t yet reached the point where men as a whole understand that women do not owe them their time, attention, or bodies, and women (or people perceived as women) need to be very careful. This means that there are situations where a woman might be trying to extract herself without just saying “I’m not interested” because being blunt like that carries the very real risk that the man will respond with violence. So what should autistic men who want to date women do? Simple – embrace enthusiastic consent. Treat anything less than a “hell yeah!” as a no. Prioritize everyone’s safety over your own desire to date or have sex.

So, in conclusion – yes, autistic people can totally do boundaries. In general, we need them communicated to us clearly, because that subtle, clue-based communication that allistic people like so much is often very confusing for us. Autistic people work VERY hard to accommodate the needs of allistics. I don’t think it’s a lot to ask for communication we can easily recognize, that will help us to accommodate you even more.

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Recognizing Faces

Retrospective

I’m pondering recognizing faces today. Or rather, not recognizing faces.

See, I’m not so good at recognizing people by their face’s. It’s a fairly common thing in Asperger’s. It actually has a name – prosopagnosia, and I have it, if only relatively mildly. I mean, I can recognize some faces, some of the time, but really not consistently and often cannot tell people apart even if everyone else thinks those people look totally different. Case in point – remember those Lord of the Ring movies? And two of the characters were Aragorn and Boromir? I had to watch the entire trilogy through three times before I could even begin to tell them apart, and even now it’s tricky. To me, one brown-hair-and-a-goatee looks like any other brown-hair-and-a-goatee. High school was rough, let me tell you.

This actually popped to mind because I was pondering my cat. Tarball knows me quite well at this point. Probably mostly by scent, but my face seems to have some meaning for him as well. While I stop recognizing someone if they change their hair in some significant way, Tarball seems to have no trouble. I cut off all my hair a while back, and he never even blinked. I find myself wondering – does he notice at all? Does he recognize my face? If so, what about my face is it that he notices? Or is it more my scent, my posture, my voice (those being the things I myself can more consistently recognize people by)?

Then I got to wondering if he does have some form of facial recognition, what does it go by. What does he look at? When I look at faces, I never see a whole face. At least, not in the way I’ve heard it described. I see pieces. Chin, nose, cheeks, forehead, hair. I actually cannot recall whole face in my memory or visualize a face in my mind. Only pieces. I suspect I miss a lot of nuance in faces.

Sometimes I wonder what it must be like to just see a whole face. Apparently for NTs, that’s now it works – whole faces. Not pieces and parts seen a bit at a time, but just… an entire face. I feel like I am not describing this particularly well, but I doubt I can do any better given how foreign it is to me.

I’m not sure why, but it is a bit easier for me when I’m looking at a photograph of a person, rather than the person themself. Though that gets into the trickiness that pictures of the same person photographed from different angles or with different facial expressions will look like entirely different people to me. That’s a little weird.

A face only becomes even vaguely unified once I get to know a person, or at least once I see them enough for their features to become distinctly *them* rather than just a collection of features that could be anyone. I still don’t see whole faces exactly, but I can recognize them against other people with similar features, and their pictures all look like them.

This is another post without much point. I just felt like exploring the concept, since my cat seems to have no troubles here and it popped to mind. Faces are just such strange, tricky things. It’s hard to know what to make of them.

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Science, Culture, and Differences

This is actually two or three different topics that I just can’t seem to separate enough to make them into separate posts. They’re all small enough, though, that I think one post going over the whole thing won’t be too overwhelming. However, I confess, I fear that my thoughts are still too jumbled and mashed up to be able to make a clear and coherent post. I’m going to try anyway. We’ll see how it goes.

Let’s start with culture. Autism culture. Specifically, the “autism is autism” part of the culture. By that I mean, the idea that all the different “types” of autism spectrum disorders are, in the end, simply autism. Classic autism, Asperger’s syndrome, PDD-NOS, are all autism and that’s all. Not everyone agrees with it for a wide variety of reasons, but it’s common enough to be a thing. Many people are quite passionate about it and quite firm in their “autism is autism” stance.

Next, there’s the DSM 5. As it quite well known by now, it merged various similar-but-distinct diagnoses into one – Autism Spectrum Disorder. I’ve been asked what I think of this change, and honestly, I’m not sure what to think. It certainly fits with the ‘autism is autism’ culture we have going on, but does it fit with the science? Well…. there is no science. Not really. Not yet.

Right now, while we generally understand autism disorders to be neurological in nature, we don’t really understand what is actually happening. We barely have any idea what the differences are, and the research is very new. Diagnosing autism relies entirely on behavioral markers. I really don’t want this post to get too far into the debate about whether or not they are “really” the same or different. Mostly, it seems a little of both. There are differences, there are similarities, and it all centers around a developmental delay in social processing and understanding. So there’s that. Are the differences distinct, above and beyond the similarities? We don’t know.

Then there’s the science. It’s just getting started, and admittedly, I find it fascinating. I rather wish I could participate in a study where they looked at my brain using any number of things (MRI, EEG, whatever else) to see how my brain is distinct, what makes it an ASD brain rather than a neurotypical or allistic brain. That would be so cool.

Anyway, I was going to talk a bit about a couple of studies that I’ve heard of. For instance, there was an EEG study. It was small, too small to really form strong conclusions or change how we diagnose or anything. But it was interesting enough that scientists want to do more. To put it briefly (as I understand it) scientists used an EEG machine to look at the brains of autistic children, children with Asperger’s, and neurotypical children, and compared the results. The results were, basically, that Asperger’s and autism brains are more like each other than like neurotypical brains, but that the two are still sufficiently distinct as to be noticeably different on the EEG.

There was also a small, exploratory study that looked at a small number of autism spectrum brains. To quote the wired article, “Now, a new study adds an intriguing, unexpected, and sure-to-be controversial finding to the mix: It suggests the brains of children with autism contain small patches where the normally ordered arrangement of neurons in the cerebral cortex is disrupted.” This study was very small – it involved post-mortem (which is really sad, right there) brain tissue from 22 children, 11 at varying points on the autism spectrum, and 11 as controls. The conclusion was, basically, that autism brains are distinctly different from neurotypical brains, regardless of “which” autism it was. They were also different from each other, in ways that basically means more study is needed.

I don’t really know what this all means. It’s all very interesting, and I like looking at the neurology, even if I don’t really understand it. I worry about the science of autism and the culture of autism coming into conflict if the scientific results fail to support the culture, just as much as I worry that the science of autism will careen off into an icky, “lets get rid of autism” direction. On both ends, I worry that an insistence on unity OR an insistence on distinct categories will lead us towards failing to see the individual needs of each person. People who are against “autism is autism” will point out that people on varying points of the spectrum need different types of help. This is often true. However, even people within the various categories often need different types or different intensities of help. When it comes to support, it all has to be individualized. When it comes to the science… well, we just really need to know more.

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This or That

So over on the Asperger’s Support Network page on facebook, someone asked a question:

How do you determine what behavior is due to Aspergers and what is not?

Turns out I wanted to answer this question in a blog post, as a comment on a facebook post just wasn’t good enough for me. Actually, the way I first read this question was “what behaviors are due to Aspergers?”

My answer to that one is “all of them and none of them.”

This question worries me. They are always presented without context, unless the anonymous asker included context in their question – which they usually don’t. This one, of course, also did not. So I don’t know who asked or why they want to know or if there is any particular behavior they are worried about. If there is, obviously I am not sufficiently informed to answer.

However, as to behaviors in general… well, here’s the thing. Autism is pervasive. I can’t really put my different behaviors into neat little piles and say “these are the autism behaviors” any more than I can have “female behaviors.” My behaviors are simply my behaviors. Asperger’s syndrome affects everything I do, all the time.

What I really want to say to questions like this is – don’t. What is the purpose of saying “this behavior is due to Aspergers?” What are you hoping to accomplish? Ultimately, I cannot imagine a good reason to do this, and I can think a whole lot of reasons not to.

Before I go rambling away more, I just want to make my point really clear – never, ever, write off a behavior as simply “part of autism.” Never.

I imagine this topic has been coming up a lot since that article about Peter Lanza (Adam Lanza’s father) came out. The writer spent quite some time interviewing Peter Lanza, and wrote a lengthy, rather sad, article about his perspective. There was one bit that is particularly relevant here:

Peter and Nancy were confident enough in the Asperger’s diagnosis that they didn’t look for other explanations for Adam’s behavior. In that sense, Asperger’s may have distracted them from whatever else was amiss.

As I’ve said really quite often by now, I am a fan of labels. Having words empowers me, gives me direction and coherence that I might otherwise lack. The word “Asperger’s” drastically improved my life. Knowing what’s going on, being able to have a handle on it, having a WORD, that was amazing to me. IS amazing to me. Yet sometimes people respond to labels in troubling ways. Ways that show a lack of insight, of this “theory of mind” thing that allistic people like to criticize us about so much.

Sometimes, some people will see a label and just stop there. An anomalous behavior will be attributed to the label, they will simply say “well, people with [label] just do that sometimes.” and not look further. It’s why Landon Bryce of Thautcast fears “wandering” becoming a diagnosis. Because yes, sometimes autistic children wander, but it’s important to look at why. It’s important to not just write it off as something autistic children do. Sometimes the wandering is, in fact, a matter of self-protection. Of getting away from painful circumstances, whether those circumstances consist of a painful noise, or sensory overload, or gay reparative therapy, or abuse. If we get to the label and stop there, we can’t find out if there’s more there.

A diary of a mom wrote about the same issue. About a child who banged his head in a desperate attempt to cope with constant pain, and no one looked into it because “autistic children do that.”

If a child withdraws, you can’t say “that’s just autism.”

If a child is hurting themself, you can’t say “that’s just autism.”

If a child wanders off, you can’t say “that’s just autism.”

It is SO IMPORTANT to look at why. And yeah, maybe sometimes there won’t be much of a why. I regularly get distracted by shiny things, to the point that Nee tries to keep me in sight when we’re out and about, because he’s never sure when I’ll suddenly feel an intense need to study some random thing. Yeah, it happens. But it also happens that sometimes people need to get away from something that hurts them. Sometimes an autistic child may not be able to say “that hurts!” in any way other than getting away from it. I am quite sure the same is true for some autistic adults. We don’t always have words, and when we do we can’t always use them in the way people think we should.

NEVER stop at the label. NEVER say “that’s just Asperger’s.”

Oh, and please don’t try to split me apart into “asperger’s parts” and “non-asperger’s parts.” Asperger’s is throughout me. I may not be a coherent whole, but it isn’t Asperger’s that divides me.

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How to talk to me

At first I thought about making a “how to talk to introverts” post. Or maybe a “how to talk to anxious people” post, or a “how to talk to aspies” post. However, I really don’t think I’m qualified to speak on behalf of entire groups like that. I may be part of all of those groups but I’m not their spokesperson, and even within those groups, different things will work for different people. So instead, here’s a “how to talk to me” post.

Many, if not all, of the points I make will apply to lots of other people besides me, so this isn’t entirely self serving. They may apply to introverts, or to the socially anxious, or to autistic people, or any combination of the above. Ultimately, your best bet is to get to know people as individuals and figure out what works for them.

So, onwards to what works for me.

One of the biggest is to give me time to process and answer. If I am putting lots of energy into socializing, I can usually process quickly enough that people don’t notice much of a lag. However, if I am focused on something else or not pushing myself to process at top speed, it will take me some time to process what you said, come up with a response, and put that response into words that make sense. Importantly, I really need you to stop talking while I’m working on that. I cannot listen to someone and process my response at the same time, so every time you start talking again I need to begin the process all over again.

Really, any time you are wanting a response from me, it is important to stop talking in order to get it. I’ve noticed that sometimes people seem to just keep talking and talking and talking and just won’t stop, and I’m politely waiting for them to stop talking so that I can respond and it never seems to happen. Eventually I will tune them out (which feels very rude and I don’t like doing it) so that I can come up with a response, and then interrupt to say something. What’s always so odd is they respond as though that is what they were waiting for me to do.

I don’t like socializing this way. Let’s take turns, and please give me the time and space I need. If you want me to be at all relaxed around you, this is even more important. The more relaxed I am, the slower I am to process and respond (Nee would probably attest to that one). So I like it when people are ok with that.

Moving on – this goes against the usual tips I see about socializing, but please don’t touch me without permission. Not even a handshake. I will be far more comfortable with you if you keep your hands to yourself and refrain from thrusting body parts in my direction with the expectation of grabbing one of my body parts. Eventually I might feel comfortable enough with you to engage in social touch, but please let it be on my terms. Beginning an interaction with a handshake guarantees that I will feel tense and icky for it.

Don’t try to force eye contact. I might look at your face when we talk, but I will never even glance at your eyes. Even looking at faces is draining and I might more look in your vague, general direction. However, that is draining too, so I might just look away from you. It depends on how much energy I have, and how I feel it’s best to use that energy. I don’t need to look at your in order to listen to you. On the contrary, oftentimes I listen much better when I’m looking away, and don’t need to process lots of visual information at the same time that I’m processing all that auditory information. Respect that.

Mostly what I need is for you to respect my differences. Don’t try to force me to interact like everyone else thinking that it qualifies as “improvement” because it does not. Improvement is being able to interact with people without being unduly stressed or exhausted. Allowing me to be the way I am is the best way to accomplish that goal.

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Bound by my word

I’ve noticed that there are some ways that I seem to use my words differently than other people. I am literal, I am absolute, I tend to take things seriously. This impacts my life in an incredibly large number of ways, and one of those ways is in words and language and how I treat what I say.

Specifically, I am bound by my word in a way that I’ve noticed other people are not. I was having some goofy conversation with a friend of mine a while back, and he was doing something physically goofy as well. It was all very silly. At one point he said that he was done doing the goofy thing for the night, but then he did it more a few minutes later. And my first response was to think that he lied. It was not a big deal or anything, but still. A lie. But then he said that no no, it was not a lie. He had simply changed his mind, which is apparently a totally valid thing to do. I am trying very hard to respect that, and acknowledge that language is apparently fuzzy for other people.

However, it does not work that way for me. Language is rarely fuzzy (though sometimes language is unclear, and it bothers me when it is), and I mean what I say. Or at least, I had bloody well better mean what I say, because I am bound by it. I don’t need to say “I promise” or “I give you my word” in order to set my word more firmly and make it solid. It is simply always like that, by default. If I say that I am done with something for the night, then I am bound by that. My options are to be done for the night, or to make myself a liar. Changing my mind simply is not an option.

I mean, it could be an option. But it has to be put into the words I say. I would have to say “I think I am done with Thing” or “I am probably done with Thing” or maybe “unless something changes, I am done with Thing.” If I wrap my language around my decision not being certain, then I get to change my mind and my decision can be less-than-solid. If I don’t do that, though, then that’s it. If I do not make my words say there is an option to change my mind, then the option is not there. If I do not put an end-time on Thing, then there is no end-time. If I say “I am done with Thing” then I am done forever, because I did not give myself the option to change my mind, nor did I stipulate end conditions. Therefore there are no end conditions and instead it lasts forever.

I’ve started idly speculating where this might be coming from. Some of it might be my Christian upbringing and that bit from the Sermon on the Mount when Jesus says “But I say to you, make no oath at all, either by heaven, for it is the throne of God, or by the earth, for it is the footstool of His feet, or by Jerusalem, for it is THE CITY OF THE GREAT KING. Nor shall you make an oath by your head, for you cannot make one hair white or black. But let your statement be, ‘Yes, yes’ or ‘No, no’; anything beyond these is of evil.” (Matthew 5: 34-37) That was one of the verses I distinctly remember from growing up, and despite my dramatically changed beliefs, it may have stuck with me.

It also might be due to Aspergers and how it reflects in my thinking. As I mentioned before, I am literal. I am absolute. I do not think in shades of gray and I never have. So viewing what I say in absolute, inflexible terms is really only natural. There is also the fact that I have a history of learning to be very careful with what I say simply due to necessity. People who do not have this history may not regularly watch their words particularly closely. Or perhaps the Christian upbringing and my aspie self and history collided, causing some extreme reactions in some of what I say and do.

It is hard for me to remember that not everyone works this way. That people can made a declarative statement with no explicitly stated way out, and still change their minds. That this does not make them liars. I am trying, though, and working on respecting other people’s fuzzy use of language.

Nonetheless, that effort to understand fuzzy language does not extend to myself. Trying to understand that other people are not bound by their word the way I am does not actually change the fact that I am bound by what I say. I wonder if someday this will change, but right now it seems unlikely.

 

Update: Ok, so I wrote this back in August and am only now posting it. That’s sort of how it goes with this blog. However, in that time frame, something changed! Specifically,  I’d added a “not in my right mind” clause for if I make a bad decision at a time when I can reasonably say that my brain is malfunctioning. Then, I’m not bound by it. I haven’t actually managed to test this yet, but it seems to have wormed it’s way into my thinking.

I am also finding myself confronting the fact that in this case, my rigidity is not doing me any favors, and there are probably more circumstances where I need to be able to change my mind. On a side note, it feels really weird to type the phrase “change my mind.”

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Asperger’s and Religion

Quite a while ago a blogger I like to read sometimes talked a bit about the intersection of religion and the autism spectrum. He ended it with an appeal to his readers to talk about how religion and ASDs intersected for them. He probably meant in the comments, but I thought I might make a blog post out of it. Partly because I am sooo not his target audience (as he appears to be primarily talking to Christians) and partly because I wasn’t sure I could sum it up enough for it to make a good comment. Since then it’s been burbling around in the back of my head, and I think I’m finally ready to talk about it. Fair warning: there’s going to be a lot of just talking about religion here. It only gets intersectional at the end.

So I want to talk about the use of religion. What is it for? Why be religious? There seem to be two dominant answers to that question – to have a sense of morality, and to explain things that otherwise cannot be explained. I grew up christian, and both of those reasons for religion were drilled into me quite firmly. To me, they seemed to be totally logical and reasonable, even more so since I also grew up a tad anti-science. However, eventually my beliefs crumbled and many of the things I was taught no longer made sense to me. I was no longer able to accept what I was told on face value.

This loss of my christian beliefs had a number of different effects. One was that I realized that even the most deeply held belief can change. End result – my religious beliefs are now fluid. They have a tendency to change over time and I am very comfortable with that. Another effect was that during this transitional period, religion was suddenly no longer able to be my source of morality, or my answer to life’s questions or science’s confusing parts. So what happens then?

Well, I became ok with that. I realized that I did not actually need religion in order to have a sense of right and wrong. My sense of right and wrong comes largely from myself, though I grudgingly admit that the society in which I live has an impact as well. Religion simply is not necessary. In fact, it has gotten to the point that the idea of viewing morality as commands from a god or otherwise entirely external to oneself kind of skeeves me out.

Also, science is awesome. No, scientists do not have all the answers, but the methodology of looking is pretty nifty. Nor am I interested in having a God(s) of the Gaps. I don’t view gods as scientifically necessary and I am ok with that.

What this basically means is that the two primary reasons people seem to want religion in their lives simply don’t apply to me. My gods do not hand down rules to live by in order to create my sense of right and wrong, nor do they challenge science in any way.

So that brings us to the question – why do I have religion?

First and foremost, religion is, for me, something to experience. The experience of rituals, of standing in the rain, of whatever things I do in the practice of my beliefs. It’s about how I feel during those experiences, and the general sense that they are a positive aspect of my life. After I described my religion to someone once, they called it “experiential religion” and I really like that. I think it describes it well.

Beyond that religion is one of my tools for self improvement. This is where it gets a bit intersectional. I highly value the general process of improving myself and growing and stretching in various ways. Also, due to being on the autism spectrum, I am developmentally behind. I just am. So in some ways, my whole life can feel like I’m just running to catch up, only I never actually will. Religion helps me keep going, and it challenges me to be better. It was religion that finally forced me to add nuance and shades of gray to my strict black-and-white worldview. My religion (among other things) tells me that I am not allowed to stagnate. The fluid nature of my beliefs helps me to be more fluid in general, which is useful as I tend to want to be rigid.

Religion and Aspergers has also collided in another way for me – the concept of ‘self’ as ‘soul.’ I grew up with the idea that people have souls, and that our souls are, essentially, ourselves. Our soul is where our personality and identity live, and they are separate and apart from our bodies. However, autism spectrum disorders are, by increasing evidence, neurological. It shows in the very structure and pathways of our brains. There is also an increasing culture that autism is identity – that you cannot separate the “me” from the autism. Which calls into question this ‘self as something separate from the body’ thing. I haven’t figured this one out yet, but I have found my beliefs changing – less transcendent and more immanent.

On a tangential note, sometimes I wonder if this soul problem is one of the reasons why some people (parents) really want to see autism as something separate from personality or identity. That there is a person “trapped behind” the autism or something. Because facing the idea that something as base and physical as neurology can directly impact who we are might simply be too much.

Overall, my religion and my neurology certainly do intersect. I imagine they did when I was a Christian as well, but it’s harder for me to dig out exactly how so. Nevertheless, being on the autism spectrum is pervasive, and it has an impact on everything – including how I experience religion.

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