Tag Archives: culture

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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Boundaries (again)

creative commons image by amiruddin on flickr

I want to talk about boundaries again. Boundaries are important. Finding ways to express boundaries is important. Responding properly when someone has expressed a boundary – VERY important.

So here is a thing about me – I have trouble explicitly stating my boundaries. I think there are a couple reasons why.

I was raised as a female. In my experience, people who were raised with the expectation that they would become women are raised (at least in the US) to not be clear about their boundaries. Women (or people perceived as women) are typically punished for defending their own boundaries, which leads women (or people perceived or raised as women) to finding other ways to state their needs or desires or boundaries. It leads to being indirect, to phrasing requests as offers, to saying “hey, why don’t you do x?” when they mean “you are doing y and it’s causing me discomfort or worse, please do something else” and expecting the listener to understand that a thing phrased as an offer or a suggestion was actually a request. As I’ve written about before I have an intensely huge problem with this sort of behavior. I find it rude, though for some reason many people seem to believe that it qualifies as “nice” or “polite.” Anyway, regardless of how I view that sort of behavior, I was raised as a woman. I was taught that it’s wrong for me to explicitly state my boundaries.

On top of that, I was on the autism spectrum but undiagnosed. No one knew. There were things that caused me pain that people could not understand how it did, so they did not believe me. I was expected to do the things everyone else did, regardless of the impact it had on me. Sensory overload and can’t cope? Doesn’t matter, I still need to go along with everyone else, smile as though I’m having fun, act the way I’m expected to act. Failure to do so would result in scolding, judgement, and/or punishment, and this continued well into my adult life. Actually, it still continues, though far less so and mostly from people who are convinced that if I just try harder, I could be like them. Happily, I am now at a point in my life where I can mostly ignore those people.

The end result of these two things is that I really have a hard time simply stating my boundaries. However, it’s something I’m working really hard on as I want to be able to do so, and I think it’s wrong to expect people perceived as women to always be passive and indirect about their own needs. Also, I really want people to be direct with me about their boundaries. I HATE having to constantly reinterpret what people say and figure out what they really mean because they’re being indirect. I have actually been actively working on ways to deal with that that don’t leave me angry or resentful for indefinite periods of time (potential script I have yet to use but think might work: “That was phrased as an offer/suggestion. Was it actually an offer/suggestion, or was it really a request?”) Anyway, because I want people to be courteous enough to be direct with me, I’m trying to learn to be direct as well.

So. Let’s say I actually manage to direct state a boundary. Or really, let’s say anyone directly states a boundary. Or even indirectly (arg) states a boundary but you’re lucky enough to know what they mean. What do you do next?

Happily, the thing to do next is the same in ALL instances! It’s a lovely area that does not force me to have a lot of different answers based on small differences in context. The thing to do next is respect the boundary.

So simple! Someone says “here is my boundary.” Then you say “ok! I respect that boundary!” And then, you know, you don’t cross that line, whatever it happens to be. Now, maybe you don’t understand why that’s a boundary. Maybe it seems weird and pointless to you. The right answer is still to respect the boundary. DO NOT demand that the boundary be explained to you first. DO NOT choose to reject the boundary just because you don’t get it. DO NOT say that the boundary is wrong or should be changed.

Sometimes there will be a tricky situation is two people’s boundaries/needs/whatever conflict with each other. I don’t have a pat answer for that situation. All I can say is to negotiate. Respect each other’s needs, believe each other when they express their needs and/or boundaries, and try to work out the best way to accommodate both of you.

It should not be hard to just accept and respect the boundaries people state, but so often it seems that people don’t do that. It’s hard enough for me to just directly say “here is my boundary.” Coming back with “no, your boundary should be something else” is rude, entitled, and personally painful. Don’t do that crap, seriously.

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Expressing Affection

creative commons picture by Tambako on flickr

d’awww

In this case, I actually want to talk about affection in the context of friendship-feelings, rather than romantic-feelings. There is already good and healthy talk out there about romantic feelings, and how different people express their love and affection in different ways, and how understanding that can lead to better relationships. This is good and lovely, but I have not personally seen very much of this concept being applied to friendship type feelings.

Friendships seem to come in all sorts of degrees of closeness. I’ll be honest, I find navigating it all to be difficult and complicated, and I rarely find it worth it for anything short of very close, intimate friendships (though lately I have been experimenting with more casual friendships. it’s… interesting). Anyway, I am wanting to talk about expressing platonic affection. There are ways that I have to express affection or say “I like you” in friendship ways. Things like looking direction at a person’s face for several seconds straight, or giving them a big grin, or deliberately reaching out and touching them. In my language, these are all significant things because I do not do them easily or casually. They are how I express friendship affection.

Unfortunately, I have learned that not everyone sees them this way. I have had these things shrugged off and disregarded, sometimes in ways that I find hurtful. And not necessarily by people who want to hurt me, but by people who actually like me and reciprocate some level of friendship-feelings, but who apparently simply don’t understand what I’m saying when I do those things.

So I figure there are two steps to dealing with this. One is to try to teach them my language, so they know what various actions are saying (this blog post is actually a minor attempt at that). Another is to try to learn their language and use it too.

I like words. Words are fabulous. So it seems reasonable to, at least occasionally, say to a person “I like you.” When I think about it, it’s kind of amazing to me just how challenging it is for me to say that. I can say “I like doing this thing with you” relatively easily, but that is very different. So a personal project that I have been working on is to, here and there, say “I like you” to a person I have friendship-feelings towards. Of course, there is still a high degree of probability that they won’t really grok how challenging it is for me to say. I mean, given how much I like words it seems rather counter-intuitive that I would find saying certain things so difficult. However, it will mean that I will be saying it in a more direct, common-language way, so there will be less chance of my meaning being lost in translation.

In at least one experiment of this, I learned that words can be really quite significant. I have been riding for around four years. In that time, I have grown to have friendship-type feelings at my riding instructor. In all the time I’ve been riding, in FOUR YEARS of chatting, sharing personal stories, and getting to know each other, I had never once actually said “I like you.” NOT ONCE. So eventually I gathered my courage and did just that. I told her that I wanted to consider her a friend, I said that I really like having the chance to just chat and such once a week, and I said “I like you.” She actually surprised me with the strength of her positive response. So in at least one case, actually using the words really turned out to be a good thing to do.

So now I’m experimenting in little ways, here and there, with other people. I guess we’ll see how it goes.

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Let’s all join together and not touch at all

I think the day before Major National Holiday That Clogs Up All The Malls is a great day for a silly, fun post.

Now, as I’ve mentioned before, this blog has impacted my life in various different ways. Here is yet another one.

As of right now, the all-time most popular post I’ve written is Why I don’t like social touch, by a rather significant margin. It got a lot of comments relative to my other posts, and has been shared on facebook over 100 times (that’s a lot for me!). Since posting it, I’ve learned that people are regularly asking google why they don’t like social touch. I’ve learned that it is not just an aspie thing – plenty of neurotypical people experience the same thing as well. I’ve learned that I don’t need to feel strange and alone about this – while the majority of people may be ok with casual social touch, there are still plenty of people out there like me. Who maybe wish there were other ways to build casual social connections with strangers that did not involve getting their sticky on our fingers.

As usual I do not actually have any solutions. However, that does not mean that I cannot speculate! Let’s see what I can come up with on How To Not Touch People.

Warning: no promises that any of these will be good ideas. ^_^

1. Wave instead. Actually, I do this one for real. If I’m not feeling up for touching strangers but am in a situation where I am being introduced to people, I’ll make a point to stand at a sufficient distance that they’ll feel a little awkward thrusting their hand towards me. I also make a point to wave right away, before the usual hand-thrusting part. People are generally willing to wave back instead of grabbing appendages, though I do sometimes get weird looks.

by RedHerring1Up on flickr

You don’t have to wave this much, but you can if you want to.

2. Do the chicken dance. Everyone knows the chicken dance! Surely that would be a great way to connect. Plus, I imagine that it would be challenging to grab someone’s hand while said hand is tucked into their waist and I only have access to elbows.

by soundfromwayout on flickr

*wiggle**wiggle**wiggle*

3. Thrust your hand at them before they get a chance to thrust their hand at you. (also, am I the only person who thinks that people look really pushy when they’re trying to shake hands?) Yeah, you’ll still end up touching, but you’ll also be more in control.

pic by me

GIVE ME YOUR APPENDAGE!

4. Plank. No one will know what to do with you, so hopefully they’ll just leave you alone. Warning: they may decide to poke you instead. Hard to say.

by marcoderksen on flickr

It’s probably ok to plank in more comfortable places

5. Bake cookies ahead of time (if you know you’re going to be meeting people who will want to touch you) and give them to the people you meet. Your hands will be occupied holding the cookie tin, and people will like you because they associate you with cookies. If you want to be as ideal about it as possible, include things like sugar-free, gluten-free, and vegan varieties of cookies, so as to not unintentionally leave people out.

by yevgene on flickr

OMNOMNOM

6. Hunch your shoulders and glare at everyone. I used to do this one when I was younger. It’s a good way to avoid touching people, but it works poorly for helping to connect with people or smoothing social interactions. I recommend this idea least of all.

by edwaado on flickr

This cat knows what I’m talking about

7. Borrow a greeting ritual from another culture or time period. Maybe bow, or nod your head, or tip your hat (if you’re wearing one).

by Narith5 on flickr

This one is Cambodian

Ok, I think that’s enough for now. I would love to hear any ideas you have! Silly, serious, or otherwise – they’re all good. ^_^

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