Tag Archives: aspergers

What you see is not necessarily what you get

There is something that I really want to see more people accept. This is probably true in much broader contexts than autism, but autism is the place where I feel it the most.

That being – what you see when you look at me and what is actually going on do not necessarily line up. People assume that whatever is going on in one’s head will automatically show on one’s face. That it just *happens,* all on it’s own. Which means that if a person has a blank facial expression, there must not be anything going on in their head.

It’s an easy conclusion to reach. It’s easy to assume this, and there may be plenty of circumstances where it’s true. There are, however, also plenty of circumstances where it is not true.

For instance, when I am particularly focused on something, my face tends to go blank. I knew that my face tended to go a bit slack when I was focusing, but up until recently I was not aware of the extent of this tendency. Not too long ago my SO took some brief video of me during my riding lesson. During the time that he was doing so, I was focused and concentrating and actually working quite hard. As it turns out, I did not look that way at all.

I imagine that when people think about someone who is really focused or concentrating on something, they picture something like this:

focused

I, however, look different. I looked blank. Completely blank. I mean, my jaw was slack and everything. Keeping expressions on my face takes a certain constant amount of attention. Usually it’s a small enough amount of attention that I don’t actually have to worry about it. However, when I am strongly focused or really tired, my facial expressions just seem to fall off. I imagine it happens in more contexts than just riding, too.

Sometimes people treat me as though I am, shall we say, not so smart. There are any number of reasons why they might, including that being just their default way of interacting with people, but I imagine part of it is that slack-jawed, empty looking stare I can get sometimes. And when people see me with that blank face, they assume that my mind is equally blank, when, in fact, it’s the other way around.

I’ve had similar “what you see is not what is happening” incidents in my life. For instance, when doing things like card games, I like to sit and visualize moving the cards around before making a move, so that I can get an idea of which moves will work and which moves will not. If someone happens to be watching me, all they will see is me just sitting and staring motionless at the screen. I have had people try to point out moves to me, thinking that I must not be seeing them. What I am doing does not show, but that does not mean that I am doing nothing.

I know that keeping this sort of thing in mind in the moment can be challenging. This is one (of many) reasons why autism advocates say to assume competence. We don’t always look or act the way you expect intelligent people to look or act, but that does not make up stupid. I often listen best by looking away and having a small fidget or stim with my hands. Other autistic people may listen best by flapping their hands or by humming or otherwise doing things that do not look like what people expect listening to look like. Forcing me to look like I’m listening will only result in poorer listening from me.

Instead, I would rather people accept those of us on the autism spectrum as we are, even if we don’t look or act the way you think we “should.”

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Rifts and Divisions

I am only on the fringes of autism communities, but even from way out here I can see that they have some serious problems. In this case, I am speaking specifically in terms of rifts. Huge, gaping chasms between different groups that only appear to be growing. There is tension and anger and hurt between autistic adults, parents of autistic children, various “experts” in the autism field, and sometimes even allistic friends of autistic people. These rifts are volatile enough to have driven at least one autistic blogger right out of autism communities entirely. These problems, and the ways many of us (including all the groups here) seem to be dealing with these rifts is really not helping.

Also, I am not immune. I have my own lines in the sand and I feel hurt and angry and frustrated when I see people cross them. I often feel alienated by parents and by experts and by people who are, in theory, supposed to be on my side – because we are all supposed to be on the same side, aren’t we? But it’s just not working that way. I want this post to be about the divisions themselves and my hope of reaching out and narrowing them, even if by a little bit, and I’m hoping my own hurts won’t impact this goal too much. However, I cannot guarantee that I will be able to keep them out.

Lately I have been talking to a friend of mine about erased and invisible I often feel. After writing Erasure, it came up that, despite so many of us making so much noise, we simply were not heard by much of the general public. People happily went on their way with no idea of what had happened with attitudes about Asperger’s and Adam Lanza. We tried to make our voices heard, but the general public was simply not listening. And I feel frustrated about this and I don’t know how to fix it.

I think that lots of people in the greater autism community feel this way. I doubt that I am the only blogger who feels like I am mostly shouting into the wind, and I have gathered that many parents feel the same way. It feels combative – that we have to fight the “experts” spreading hurtful and damaging information, we have to fight schools that don’t want to give accommodations, we have to fight employers, we have to fight misinformation, we have to keep on fighting and keep on shouting in order to be heard at all.

Only instead of this common frustration being a point of unification, it seems to be a point furthering the divisions, especially between parents of autistic children and adults on the spectrum. It’s like we think all the chairs at the table are filled, and there’s only one chair left, so only one group can have it. Autistic people often feel frustrated at being silenced, at how often people will talk about us without even considering talking to us, and we are trying so hard to be heard. Yet when I see autistic people say “we need to be included in the conversation too, please stop shutting us out” I often see parents reply “stop trying to exclude parents from the conversation! we need to speak for our children!”

It baffles me. Including autistic voices should not automatically mean excluding the voices of parents, so why do people take it that way? Ultimately, I think it comes down to the chair analogy. I think part of it is that feeling that there is only room for one more chair, and parents, understandably, want it for themselves. No one wants to be silenced. Also, I would not be surprised if there are autistic adults who *are* saying that parents should not be heard – and even that, I think, is about the chairs. If there’s only one chair left, it shouldn’t be surprising that autistic people want it, and believe that we have more of a right to it than parents or other groups, since we are the ones actually on the spectrum. And it doesn’t help that there are parents out there who explicitly state that we should not be allowed a voice at all. That we are either too disabled to contribute, or not sufficiently disabled to count.

This is a HUGE problem. In the end, we all want the same thing. We want the lives of people on the spectrum to be better. We want our futures to include opportunities, we don’t want to be told that we have no chance at happiness or friendships or relationships or whatever else. Yet instead of working together so we can all be heard, we turn against each other and yell our rage and our fear and our feelings of utter helplessness as though it’s each other’s fault.

And if I am utterly honest, I am sure that some of this comes down to the fact that a bunch of people with a social learning disorder are trying to build communities. I certainly don’t know how to build a community. I barely even know how to be IN a community. It’s awkward and it’s difficult and we’re making mistakes along the way.

Personally, I like the idea of building community. I think we have a better chance of being heard, of not being erased, if we can find a way to make noise together. And I think it would be even better if instead of fighting each other for the last chair left, we fought together to have more chairs so that we can ALL be heard. So that we ALL get to have a voice.

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Perseveration

Upon getting my diagnosis of Asperger’s, one of the very first things I learned about was something called perseveration. In fact, I learned about it during the actual assessment. The person who was doing it was able to give a name to something Nee had been describing about me, and helped us get some perspective.

See, I obsess a lot. My brain just seems to like doing that. In some ways I view that as a good thing, such as my defense of obsessions from a while back. However, this tendency is not always good. Sometimes it’s just amusing or neutral, like when a word or phrase gets stuck in my head and I wind up repeating it over and over and over again for several minutes straight. Other times a conversation or event will get stuck in my head for some reason, and I’ll wind up going over it repeatedly.

That last one is what I want to talk about. When something gets stuck and it’s like it’s on instant replay for days, weeks, and sometimes even months on end. Even this is not always bad. I mean, I usually wind up replaying things in my head several times over. It helps me process and it’s part of how I think through things and come up with solutions if there’s a problem.

Sometimes, though, it’s just torment. I’ll be stuck going in these little mental circles going nowhere at all. No processing is happening, I’m not progressing through a thought pattern, I’m not coming up with solutions (sometimes I already have a solution but I still can’t stop thinking about whatever it is). I’m just stuck. That, I have been told, is perseveration.

Learning that there was a word for this and learning what it is actually helped clear up some friction in my relationship with Nee. He would see me go over the same thing again and again and again, he would see that there was nothing to be gained by it, and he would see that it was causing me unhappiness. What he did not see was that I couldn’t help it. He thought that I should just be able to stop thinking about those things and that I was willfully going in circles. So learning what it was also meant learning that it was not a choice on my part, which helped him to adjust to me.

As for me, when I am able to put a label on something, I often feel like I have a better handle on it. This allowed me to identify the behavior pattern much earlier and much more easily than I had been before. It gave me a context to help me understand some of how I worked that I had not understood before. I still needed to sort out when my going over things repeatedly was working for me and when it wasn’t, but now I had a box to use for When It’s Not Working. For me, that is a very good and useful thing to have.

Apparently perseveration is a thing with the autism spectrum. I’m not alone in this, and I wonder how it impacts other people’s lives and relationships, and how different people deal with it. For me, I write. I write both to help me process, and I’ve taken to writing when I’ve noticed that I’m perseverating and not getting anywhere. It actually helps me quite a bit. I’m able to turn it into words and put the words somewhere I can see and read them, and it seems to calm my brain down. Sometimes it means that I can make progress in whatever I’m thinking about, and sometimes it means I actually get to think about something else after days of nothing but the same thing on repeat.

At this point I look at perseveration as one manifestation of an overall tendency to obsess. Obsessing can happen in a number of different ways, and I honestly view many of them as beneficial. Sometimes, though, even a beneficial trait can go sideways and then I need to find some way to handle that.

Do you perseverate? What ways have you found to cope with it?

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Filed under issue, personal

Erasure

I think I want to attempt to talk a little bit about erasure. It is something that has sat around on the fringes of my mind and I’ve talked about subject matters that have been experiencing erasure, but I have never actually named it. Nor have I explicitly pointed at something, called it out as erasure, and said that it is not ok. But I want to do so now.

First of all, it seems worthwhile to talk a little bit about what erasure is. Oddly enough, while the word is used often enough in various activism spaces, I was not able to find anywhere giving a basic 101-level explanation of what it means when people use the word. So I am going to take a stab at it, largely based on how I see it getting used. Disclaimer: this is a very broad explanation coming from someone who is new to activism. Not everyone uses the word in exactly the same way, nor does everyone define it the same way. So as far as I have seen, erasure is basically metaphorically erasing something. Perhaps it is whitewashing history to leave out the parts we would rather not admit to, or quietly pretending that certain groups of people don’t/didn’t exist or matter. It is explicitly or implicitly creating silence around an issue or a history or a people (etc).

I recently read an article comparing people’s responses to James Holmes, Adam Lanza, and Dzhokhar Tsarnaev. By and large, I did actually agree with the article. It talked about how Tsarnaev’s actions have been labelled an “act of terror” while the actions of James Holmes and Adam Lanza were not. It talked about the different ways people have been judging large groups of people. Because Holmes and Lanza have names that American’s tend to find easy to pronounce and belonged to a religion that most Americans find familiar, we do not demonize the race or religion that they belong to. We use different words to describe them and make different assumptions and say different things.

While it would probably be possible to debate various points or conclusions that the article makes, overall I generally agree with the specific points about how we stereotype people of different races or religions. People who look different, sound different, believe different, and have different names.

Which brought up the question, why do I feel so ooky when I read that article? Where is this twisty, turny, unhappy feeling in my belly coming from? Then I realized – in not stating certain things that happened in response to Lanza, the article quietly implied that Lanza was an example of someone who is held responsible for his crimes independently of any group of which he is a part. That people simply did not demonize and hate a whole group of people due to his actions.

In reality, this is not how it happened.

There was very real ugliness in response to Lanza. Ugliness that prompted me and others to write about it in protest. It all seemed to start when news outlets implied a link between Asperger’s and violence, and implied that Lanza’s Asperger’s may have had something to do with what he did. From there, it all went to pot. People freely and happily demonized Asperger’s and aspies, and made ugly, hateful, and scary comments as such. People advocated violence against us. People yelled that we should all be locked away and the key be thrown away. There were people who, when finding that someone they are talking to is an aspie, would respond with “oh, like Adam Lanza?” There were aspies afraid to leave their homes for fear of violence and reprisals against them, for something they had nothing whatsoever to do with. People brought up the tired old empathy arguments, claiming that all aspies have no empathy and either implying our outright stating that this must make us all sociopaths. It was also broadened into demonizing mental illness in general, furthering the stigma and stereotypes.

It happened. It was scary and it was hurtful and it was bad. And this article is simply ignoring that entire history in order to make a point about race and religion. It is a point I agree with, but I am not ok with a very important history being ignored for the sake of that point. I am not ok with it being quietly but completely erased, leaving us with the quiet implication that when it came to Adam Lanza, nobody got hateful about an entire group of people, or implied (or outright stated) that aspies are more likely than others to be violent, or are continuing to do so.

It is true that Americans did not (and possibly could not) Other Lanza based on his race or his name or his religion. But they could, and they did, based on his neurology. If I wanted to, I could easily make my own point that no one is demonizing all allistic or neurotypical people based on Tsarnaev’s actions – but it would be wrong of me to ignore the impact that his name, his country of origin, and his religion is having. It is equally wrong to ignore the impact of neurology and how people will respond to that.

I also find myself wondering about why, or even how, it was omitted. I do not want to assume malevolence, but I am hard pressed to believe that the author was simply unaware of this history. It was not hidden or secret or difficult to find. It was all over the place. Even if it is simple obliviousness and nothing more malicious than that, it is still disturbing to me. Whether deliberate or not, there is still an undertone that the way aspies were maligned just doesn’t really matter. That it certainly doesn’t matter the same way that demonization based off race or religion matters. That we can go ahead and overlook it, even though it would be highly relevant in a conversation about how people will hate anything that is Other in this sort of situation. Regardless of how deliberate it was, there was definite bias here. This is not ok.

Don’t erase me. Don’t erase my history or my activism or my fear or my hurts. A whole group of people was blamed for the actions of one man. Do not forget it.

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Does Sheldon have Aspergers?

I’ve decided it’s about time for me to talk about Sheldon Cooper from The Big Bang Theory again. Specifically, about how he is so completely portrayed as a stereotype of Asperger’s, yet the show never just comes out and says so. Even more specifically, about the reasons the show’s creators have given for why they are refraining from doing so, and how utterly offensive those reasons are.

This is a topic that has been bubbling around in my head ever since I first encountered it, as well as the blow-to-the-gut feeling I had upon first hearing a rough outline of the justifications for not giving Sheldon the Aspergers label. Fair warning – this is an emotional enough topic for me that I’m probably going to have some trouble writing it. Also, I am not always very good at unpacking and explaining why something is problematic and/or offensive, and I’m not sure I am going to have all the words I need to do it justice or fully explain my feelings. Still, I am going to try.

So basically, apparently lots of people have questioned whether or not Sheldon has Aspergers. Enough so that there are multiple articles out there talking about it, and the show’s creators have talked some about why they have not and will not give Sheldon that particular label. The problem is I happen to find all their reasons deeply problematic and offensive. I figure I’ll just go over them and try to unpack their problems in no particular order.

Number one on the list is that if he’s afflicted with a real disease, how can his friends mock him the way they do? [link]

Alright, if that’s what they are going to declare “number one,” then that’s where I’ll start. The first problem that jumps out at me is the fact that they call autism a disease. Autism is NOT a disease, not at all, and it is incredibly offensive to call it that. Autism is a condition, a syndrome, and can also be termed a disorder as well as a developmental delay. It is not, not at all, a disease. A disease is something you have. Something that happens to you, but is separate from who you are. Autism is a difference that is there from the start, and will always be there. It is about how I think and view and interact with the world. For me, and many others, it is an identity.

However, there is another matter deeply problematic in this statement of theirs. One thing more or less everyone I come across in the autism community agrees on regarding Sheldon Cooper is that the Sheldon jokes (very nearly all of them) are autism jokes. Some of us find them funny, others of us find them offensive, but all of us recognize them for what they are. So when I read that sentence up there, it sounds to me like they are saying they want to mock autism and make autism jokes (because, you know, that’s exactly what they’re doing), but they don’t actually want to admit to it. Personally, I am not in the least bit impressed with that. I would much rather people just admit that they are making jokes about Aspergers rather than look away and deny it because, I don’t know, they might feel bad if they own up to what they are doing.

Our feeling is that Sheldon’s mother never got a diagnosis, so we don’t have one.

Well that doesn’t make any sense at all. It does, however, reflect some ignorant attitudes I’ve seen around occasionally, that seem to assume that Asperger’s has been on the books as a diagnosis more or less forever. In reality, Aspergers only made it into the DSM in 1994, and even then it was fairly obscure. It wasn’t until 2000 or so that it really started becoming a thing. Occasionally I encounter people who believe that if someone did not get a diagnosis in childhood, that must mean they weren’t really challenged and thus their perspectives as adults don’t mean much. This is very far from the truth, and I imagine many adults who are being diagnosed today would have been diagnosed as children, had it been known. Sheldon’s mom not getting him a diagnosis means *nothing whatsoever.* That particular justification sounds, at best, like a bad cop-out. At worst, it sounds like an echo of the harmful attitude that people diagnosed in adulthood must not have had significant problems as children.

Instead of the writers having the freedom to make Sheldon as anal and nerdy as they like, they would be constrained by the nature of the ailment.

Parsons and the show’s writers have very carefully avoided labeling Sheldon as having an ASD, because they’ve said they don’t want to be limited by what an autistic person would or wouldn’t do. [link]

Ok, I’m going to address these two together, because they are more or less the same thing, and have the same problems. Here, they are saying that if they actually labelled him with an ASD, they would suddenly find themselves writing a personification of autism, rather than writing, oh I don’t know, A CHARACTER. As though if you give someone that label, suddenly EVERYTHING they do is about that label or comes from that label.

It’s like they’re saying they would do exactly what ada hoffmann asks writers not to do in her livejournal post here. When you write about autism, there is absolutely no need to reduce the autistic character to only autism, or (even worse) to only the deficiencies of autism. In fact, it is it is a fairly horrible thing to do, because it denies us our humanity, our agency, our flexible, dynamic, and incredibly diverse selves. That is not ok at all. Labelling Sheldon with Aspergers would not suddenly limit him, and it is not ok to act like it would. It really says something about what they think of those of us on the autism spectrum – and what it says is nothing good.

As for “limited by what an autistic person would or wouldn’t do,” well that’s an interesting statement. Exactly what limits are those, anyway? Ari Ne’eman is a white house appointee, and founded the Autistic Self Advocacy Network. Alexis Wineman was Miss Montana and made into the top 15 for Miss America. Jessica-Jane Applegate won a gold medal in the paralympics. If you browse through ThAutcast’s facebook page, you’ll see autistic musicians, autistic artists, autistic people who play any variety of games, autistic people with intellectual gifts, the list goes on and on and on. Tell me, what exactly are these limitations on what autistic people “would or wouldn’t do”?

In reality, there is no reason that Sheldon would lose anything if he were labelled with Aspergers. Not unless the writers decided to do so, and if they did it would ENTIRELY be something they chose to do. Not something they were forced to do because of the label.

But by not defining Sheldon, they’ve inadvertently captured an important aspect of autism, which is that the disorder has common tendencies, but flexible boundaries.

No. Well, yes in that they are showing that “the disorder has common tendencies, but flexible boundaries,” but it is not at all *because* they did not define Sheldon. As I said above, they could still do so if they said he had Aspergers. In fact, it would be incredibly offensive (and downright wrong) if giving him that particular label changed any of that. And really, the author of that quote admitted, right in that sentence, that labelling Sheldon as being on the autism spectrum would not (or at least should not) have lost that aspect of autism.

Not unless the writers decided that they would do it that way. Which would be predictable, but wrong.

In the writers’ minds, calling it Asperger’s creates too much of a burden to get the details right. [link]

You know what… at least this one is honest. Everything so far has shown significant ignorance about Aspergers on the part of the writers/creators, to the point of being really quite offensive. Clearly, they do not know Aspergers well enough to be able to write about it, if they actually believe all the things I talked about above. While I am internally facepalming about their worrying about “details,” there is no question that they would at least need to learn enough to rid themselves of their misperceptions and prejudices. That said, I am disappointed with their decision, as well as their attitude that it would be a “burden” to learn even the basics of autism.

Personally, I would love to see Sheldon get diagnosed with Aspergers (or other ASD). It would not at all need to change the way he is portrayed, nor would it need to reduce him to “autism traits.” He could be just as eccentric, dynamic, and funny (or offensive, depending on your point of view) as ever, with all the randomness he sometimes has.

And really, this post is not purely about the fact that the creators of The Big Bang Theory have said offensive things about Aspergers in their justifications to not label Sheldon. They have simply expressed the same misinformation that already surrounds us. The fact that people seem to so readily accept their justifications just further shows how far the ignorance goes, which is a big reason why I wanted to write this. These attitudes and beliefs are wrong. They are offensive. And they need to stop.

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Navigating sex and relationships

Navigation like whoa!

After I wrote my post about finding boundaries, I thought I’d take a stab at writing about navigating sexual and/or romantic boundaries. I don’t really have any big, magical answers here, but I do have my own opinions (being that I am, in fact, somewhat opinionated).

As I peruse the internet I occasionally stumble across articles purporting to give “universal” rules or “unspoken” rules about how relationships work. I have a distinct tendency to disagree with a significant portion of those lists. I thought about grabbing one (or a few) and deconstructing them, but then I thought that maybe that wasn’t the best approach. It’s one thing to say “I disagree with that rule, don’t do that” and yet another thing to say what I do think would be good. So instead I figured I’d take a stab at making my own list. Though I think I’m going to call them “suggestions” rather than rules, because it’s hard to come up with hard and fast rules for all situations. Also, please note – I wrote this specifically with people on the spectrum or those in relationships with people on the spectrum in mind. That said, I think these have some general worth for everyone as well.

1. Practice active consent.
When it comes to sex, much of the general population seems to use an implicit consent model, where you carefully (or sometimes not so carefully) move forward until someone says no. (and if you don’t stop when someone says no, or otherwise indicates a negative, that is something else entirely) However, I prefer an active consent model, where you get a “yes” FIRST, and then move into whatever it is you’re going to do. No ambiguity. I especially find this important in the early days of sexual relationships. As people get to know each other and learn each other’s dances, it is certainly acceptable to mutually decide to go with a different consent model. But at first? I STRONGLY recommend active consent. Also, The Pervocracy has written about active consent far more eloquently than I did here. It’s good stuff.

2. Be aware of what you need/want.
This seems like it would be obvious, but it’s actually not always an easy thing to do, and not everyone has it down. Also good is if you don’t know what you need or want, try to be aware of that too. This involves introspection and being willing and able to take a good, hard look at oneself. I will admit, I am a very introspective person just in general and I am often befuddled when I encounter people who are not. So there is a lot of bias in this suggestion, but I do think it’s very important, as it is a prerequisite for the next suggestion.

3. Ask for what you need/want.
No one is psychic. Your partner is going to have a hard time figuring out what you need if you can’t or won’t voice it, and this ranges from sex to forms of affection to how you want to structure your relationship. All too often I see people wanting someone from their partner that they aren’t getting (like maybe they view cuddle time as affection, and feel like they aren’t getting enough of that), but refusing to actually ask for it. Instead they say things like “well if they really cared, they would do it anyway!” No. It does not work that way. Maybe they are expressing affection in a different way and simply do not know that you need or want something different. Maybe they would be happy to cuddle more if you just let them know. It is not less “real” because you asked for it.

4. Ask your partner what they need/want.
Yes, there is a bit of a theme here in these suggestions. ^_^ Along with recognizing that your partner is not psychic, also recognize that you are not psychic. Be willing to just ask them what they are needing or wanting, and make a point to do so. This is always important and sometimes I still ask Nee 8 years into our relationship, but once again, it is especially important early on when the people involved are still learning to navigate each other. Just ask. Additionally – you might be worried that these sorts of conversations will be awkward. I can very nearly guarantee you – at least occasionally, they will be. That’s ok. Be awkward together! You’ll get through it, and sharing these sorts of things is worth it.

5. Be honest.
Seriously. I think this is important in general, but is especially important for people on the spectrum or people involved with those on the spectrum. I’m not meaning this simply as “don’t lie.” I crave honest, direct communication. No hints, no needing to interpret what you say, nothing like that. I also prefer to do my own communicating that way, and I get frustrated in situations when I have to change what I say to allow other people to re-interpret my words into what I mean. It’s obnoxious. Can we please just make a point to be straightforward, especially when it comes to things that are already as complicated as sex and relationships?

6. Assume your partner is being honest too.
It’s always possible that they aren’t. Maybe they’re lying, maybe they’re leaving something out, maybe they’re being passive aggressive. However, I have always had the most success when I simply assume honesty and go from there. It is my responsibility to be honest about my needs and desires and whatever else, and is is their responsibility to be honest as well. Let’s assume we’re all adults and can act as such.

7. Don’t be accusatory.
I specifically mean this one in the context of a problem or disagreement happening. It’s easy, oh so very easy, to leap into accusations. Internally, at least, I know that’s often the first place I go. I see things from my own perspective, and it’s easy to read malevolence into someone else’s actions. Which is why I like to sit on things for a while first, think them through, until I can talk about them without those accusations. What I tend to find out is that usually the problem with a misunderstanding or a difference in perspective. Yeah, sometimes people are just assholes. But don’t assume that first, because if you’re wrong you might be the one who behaved like a butt.

8. Don’t share everything.
I don’t actually just mean this about objects and possessions, though it applies there too. I mean in terms of hobbies, activities, friendships, etc. Having some shared interests or hobbies or mutual friends can be fabulous, but they really do not all need to be shared. It is valuable to pursue your own interests and hobbies, regardless of if they are things your partner is interested in as well. Nee takes an interest in my hobbies simply because I do them, but there are plenty that he has no desire to do himself. The same goes for me and his hobbies. I support what he does, but I often have no desire to pick them up myself. This is healthy.

Overall, in general, and applying to most (if not all) of these points? Don’t do things simply because “that’s how it’s done.” It is very easy to do things just because it seems that’s how it’s done, and it can be surprisingly tricky to really look at that and decide for oneself if that’s the best idea for you or for your relationship. Nonetheless, it can be most valuable to put the work into doing so anyway. My relationship with Nee is, in a lot of ways, quite non-standard. It wouldn’t work for everyone, but it works for us. Figure out what works for you, even if it means your relationship does not look the way society tells us relationships should look. If everyone involved is happy and satisfied and enjoying the relationship, then you’re good.

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Finding the Boundaries

creative commons image by ank0ku on flickr

Explicit boundary markers are fabulous.

This is yet another hugemassive topic that goes far beyond anything I’m capable of fitting into a single blog post. So, yet again, I’m going to be going for a more general overview, with the idea that I can do more specific blog posts in the future.

In my post about politeness, I briefly listed a few areas of polite behavior, including finding and respecting people’s boundaries. As a matter of fact, most of what I listed could be considered a form of knowing/respecting boundaries, as this is a really huge deal. In some cases, it could be considered about being polite or otherwise, and in other cases it’s about a whole lot more. There are all sorts of types of boundaries.

When I first started thinking about this blog topic, I was thinking about a version of boundaries that fits rather neatly as a politeness thing – that is, knowing when to talk to people and when not to. Knowing how often to talk to or contact people. How much is too much, how much is not enough, that sort of thing. I am terrible at finding a balance on this one, and after many failures in relationships I’ve become somewhat obsessive and stressed about it all. Too little contact with a person and I find myself unable to continue to feel a connection with them. Too much contact with a person and they tend to run away. Trying to balance what I need and want with what the other person needs and wants is something I find terribly complicated and difficult, and I only occasionally bother to try. On this one, if anyone has any magical secrets on how to figure this out, I’d certainly love it hear them. ^_^

There are also other sorts of boundaries. Many of them are very serious sorts of boundaries, with serious consequences for getting them wrong. One of those areas is sexual boundaries. Interestingly, I don’t find sexual boundaries to be all that difficult to navigate. The big thing is that for it to work as easy as possible, there are two things each person needs to bring to the table.

1. a willingness to talk about where your boundaries are. It can be hard to directly talk about sexual things, especially since we have a lot of learned shame around it all, but it’s honestly fairly important to be able to do so. That said, it’s ok if it’s uncomfortable or challenging or embarrassing. It’s just important to do it.
2. Practice explicit consent. I am a huge proponent of explicit consent just in general for everyone (unless you have an established relationship and have worked out other ways to do it), but ESPECIALLY LOTS for anyone on the spectrum. Where it goes beyond “no means no” and into “yes means yes.” Do not assume that things are ok – ask first. It does not have to be terribly awkward and robotic, either. Enthusiastic consent is pretty hot. ^_^

Then there are more general boundaries. Some are fairly obvious (don’t punch people except in certain, very limited, contexts), and others are more about any given individual’s lines (like how I don’t want people to touch my upper arms). In the case of the latter, I strongly prefer (and very much appreciate) people who are willing to be explicit. I have a very hard time with non-verbal communication, and I miss boundaries all too often when they are expressed with gestures or facial expressions rather than with words. This is a difficult area for me – technically speaking, socially speaking, it’s up to me to detect where everyone’s boundaries are. Realistically speaking, while I do try very hard, sometimes I just can’t. I need words. So I tend to be more drawn to people who use words, or who are at least willing to use words with me. Which also means that when I person does use words to express a boundary, I make a point to respect it without making them work or fight for it.

Sometimes I find when I express boundaries to other people, their response is to immediately ask me why I need that boundary, or couldn’t I use this other boundary instead, etc. This both bothers me on a personal level and is a behavior that I find generally problematic, so I make a point to not do it (with the possible exception of if respecting that person’s boundary carries a risk of crossing a boundary of mine. then negotiation needs to happen). If, for whatever reason, I want more information I make a point to agree to the boundary first, and then express my desire for said information.

Overall, I find boundaries are things worth a lot of my energy and attention. I know I sometimes have trouble, but I really do care about getting it right, so I try. I try a lot. And I love it when people are explicit about their own boundaries. It’s fantastic.

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On Being Polite

creative commons image by smithereen11 on flickr

All up in your face!

This is a topic I’ve been meaning to write about for a long time. It also refuses to sit around patiently in the back of my mind like other blog topics, instead regularly jumping out to grab my attention. Of course, this is partly because pretty much every day I get hits on my blog from people googling about autism, aspergers, and rudeness. Clearly, this is a thing.

However, it is also a HUGE thing. The more I think about it the more I get intimidated by the prospect of trying to write about it. Politeness is a large and complicated subject matter consisting of a large variety of social dances, and I have different feelings about different ones. However, it does deserve to be written about, and I am reminding myself that it’s ok to do an overview post and go into more detail about different sorts of things in future posts.

So. The autism spectrum and what it is to be polite or rude. I think I’ll just start with the simplest (to me) area, and what first comes to my mind when people talk about this sort of thing. That is: saying “please” and “thank you.”

I have occasionally run across the attitude that these are just more examples of meaningless social noise, but I disagree with that attitude strongly. Much like other forms of social rituals that help to smooth interactions between people, simple expressions like “please” and “thank you” act as a vital social lubricant between people. “Thank you,” for instance, is a simple, shorthand way of saying “I recognize and acknowledge that you have done a thing for me, and I wish to express that I am appreciative of this and it has not gone unnoticed.” It smooths interactions. It helps people feel easier with each other. This is valuable.

I think sometimes part of the issue with this in particular and people on the autism spectrum is that neurotypicals, I gather, often seem to be able to grasp the value of those types of words and phrases intuitively. Or at least, neurotypicals seem to make the connection between using those words and finding interaction goes more smoothly fairly easily. Us autistic people, though, may have a more difficult time with that. And sadly, while neurotypicals may have an intuitive understanding, that does not mean they know how to fully articulate why it’s important or how it helps. So sometimes you wind up with people on the spectrum being rude (or at least impolite) without really understanding why, and neurotypicals being offended or bothered while having some difficulty articulating why.

Of course, there is more to being polite than simply saying “please” and “thank you.” Oh so very much more. There’s knowing when to talk and when not to talk, there’s knowing what sort of questions are appropriate to ask and what sorts are not, there’s learning to recognize and respect other people’s boundaries, how to enter or leave conversations, when it is or isn’t ok to touch people, and so very much more. Way more than I could ever address in a single blog post. And learning these things is more than just a simple lesson on being polite. They are all different skillsets that often need to be learned independently, and people on the autism spectrum often need to keep many in mind very explicitly and deliberately. It can be challenging. By and large, with few exceptions, I do strongly advocate working hard to learn how to functionally do these things, simply because we do live in a society and unless we are going to be hermits, it’s important to know how to navigate in society.

Now, before wrapping this up I want to go over an area of politeness that I actually strongly disagree with. Something where what is polite to most people comes across as ridiculously rude to me. Basically, there seems to be an entire arena of politeness that I describe as “politeness via lying.” There is a whole range of such things, all of which vex me to various degrees, but one type in particular that really gets my goat (I wonder what the root of that metaphor is) is phrasing requests or things that one wants as offers. When someone wants something for themselves, but is phrasing it as though it’s for the benefit of the other person. A very simple example is ending a phone conversation with “well, I’ll let you go now.” This one is actually only minorly vexing to me (I find it annoying, but at least I recognize it for what it is). However, people use this kind of phrasing for many things very often.

I really REALLY intensely dislike it, to an extreme degree.

From my point of view, when someone does that they are putting me in a position of being expected to mind read/recognize that what looks like an offer actually is not, and then obligates me to act grateful or like I am accepting something even if I don’t want it. Even if it’s a problem for me in some way. I cannot figure out the politeness of this; it comes across to me as shockingly rude. I have been informed that at least in this type of case, politeness is about obfuscating who the beneficiary is. That’s… interesting. However, I still don’t really understand it. The best I can manage is that it’s about avoiding vulnerability. Nonetheless, I still can’t quite bend myself to this one, and I get very resentful of people who use it with me.

I may write more about other specific areas of politeness and such in the future. As it is, the area is huge. Being polite is not always simple and straightforward, and decoding other people’s “politeness” is sometimes even more complicated. This does not mean that I believe Asperger’s or autism excuses rudeness, especially extreme rudeness, but it does mean that sometimes it really is hard. Sometimes we really don’t understand things that a neurotypical person thinks should be obvious. And sometimes we’re rude when we don’t mean to be.

Personally, I do try very hard.

And sometimes I mess up.

And then I keep on trying, and hope (once again) that people will meet me in the middle somewhere.

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labels, yet again

stock image by littledarksprite on deviantart

Will I ever be done with talking about labels? Probably not.

I want to talk about the autism vs. aspergers label again. I did once before, mostly to talk some about the arguments in favor of everyone on the spectrum calling themselves autistic, and why I disagreed with those arguments. Well, I’ve had some more thoughts on one point in particular that I want to get into more.

“They serve to alienate those of us who do not use that kind of terminology, and those who have never received the “Asperger’s” diagnosis, by separating one group of Autistics from another.”

This was one of the arguments that I talked a bit about. Or rather, I admitted that I did not understand what she was saying. I actually still don’t, but I think it might have something to do with solidarity and/or unity. Which is a worthwhile thing, even if I think the logic showed is flawed (assuming I’m interpreting it correctly). I mean, why are those who use the word “Asperger’s” alienating those who use the word “autistic” but not vice versa? It makes no sense to me.

Jumping a bit (you’ll see why soon), one of the discussion questions on the Asperger’s Support Network facebook page was someone asking for opinions regarding merging autism and Asperger’s into a single “autism spectrum disorder” diagnosis in the latest edition of the DSM. I found some of the replies interesting.

I am not happy. Aspergers has a slightly less negative stigmatism[sic] than the word Autism. It may be out of the DSM, but I will continue to use the term. There are a lot of ignorant people out there who are too quick to slap an overly negative label on a child sight unseen once the “a” word (autism) has been used.

 

 This is tragic. I am now 50. When I was in third grade I was diagonsed[sic] with “a touch of Autism” Everyone wigged out over the word Autism. This can not possibly be useful.

So apparently while some people are possibly seeking out a diagnosis of autism for the services they’ll gain access to, other people want to avoid the word due to a stigma attached to it. I find this unfortunate but understandable – people do react in different ways to the different words. I also find it interesting because it’s very different from how I’ve been finding myself thinking about it all.

Confession time – I have been finding myself increasingly wanting to simply call myself “autistic” rather than an aspie. This is not because of any thought-out logical reason, or for reasons of solidarity or to try to avoid alienating those who use the word autistic. No, this is because I keep feeling that I could gain more legitimacy this way. I keep fearing that by using “Asperger’s” people will think that I don’t really need help, or must not really struggle. And there are the “oh, you have Asperger’s? Well, you’re not REALLY autistic” people. Maybe they’re trying to be supportive when they say that, but I just wind up feeling alienated. And even in my tiny corner of the internet, I’ve run into people who tell me that since I’m “only” an aspie, my voice does not really count among autistic voices. So I want to claim the word autism as a way to claim my place. As a way to not be alienated, to legitimize myself, to say “I count too.”

Additionally, I struggle with feeling worthless kind of a lot. Sometimes I wonder if maybe it would be easier if I could claim the label “autistic.” That maybe it would make it easier to say “I have overcome x, y, and z obstacles to get to where I am now and that is awesome” instead of saying “I have not achieved a, b, or c. That is pathetic.” Rationally speaking, it’s fairly unlikely that a simple word change would make an ingrained thought pattern go away. I mean, getting my Asperger’s diagnosis ranks among the most validating events of my entire life, but the thought pattern is still there.

Once again, I do not actually have an answer to any of this. Only thoughts and rambles. I do, however, think that we would be better off if we worked to overcome the stigma of autism, rather than simply avoided the word because it’s ooky or something. Though I say that, but I must also admit that people need to decide for themselves where their energy should go. If someone is using all their energy just to try to get help and overcome whatever obstacles are in their life, I’m not going to judge them if they haven’t any energy left over to combat other people’s prejudices and biases about a word. If they choose to use a less loaded word because it makes their life easier, who am I to tell them that they’re wrong?

Then, of course, there’s this view:

Although my son has Aspergers the specialist put his diagnosis as high functioning autism so he would get easier access to services than with an aspie diagnosis so this should actually really benefit people x

Autism means better services. This is also sad, but unsurprising given the all too prevalent attitude that Asperger’s shouldn’t or doesn’t really count.

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We are not like this

Today I was going to post something light-hearted and silly, but that no longer seems appropriate. As I’m sure you know, on Friday there was a terrible mass shooting at an elementary school in Newton, CT. My heart aches for the victims, for their families, for everyone who was at the school at the time. For everyone who was is or now scared. It’s heart breaking, and the aching and sadness I feel is both overwhelming and hard to express.

As I read the updating news reports, I found myself wondering how long it would take before someone speculated that he had some form of autism, as it seems to be the thing people do now.

Sadly, it did not take very long at all. A snippet from a fox news article:

Ryan Lanza, 24, brother of  gunman Adam Lanza, 20, tells authorities that his younger brother is autistic, or has Asperger syndrome and a “personality disorder.”  Neighbors described the younger man to ABC as “odd” and displaying characteristics associated with obsessive-compulsive disorder.

And if you’re inclined to dismiss it because it’s coming from fox, I have bad news for you. This particular snippet is being repeated, more or less verbatim, all over the internet, from many different news outlets. I honestly have no idea what the original source was.

Personally, I don’t know if he was autistic or not. I don’t know if he was on the spectrum, or if he had a personality disorder or OCD or anything. Maybe he did and maybe he didn’t. Thing is, though, it does not actually matter if he did or didn’t. It’s irrelevant. The shooter committed a terrible crime, hurting many people. I do not know why he did it, but to blame it on autism is to tar an entire group of largely innocent people.

I have found a number of quotations by people demonizing everyone on the spectrum, or everyone with mental illness. I thought about quoting them here, but honestly, it’s too upsetting for me. Suffice to say there are far too many people claiming that there is a link between autism and violent behavior, and that no one on the spectrum, or with any kind of mental illness, should be allowed access to firearms, that everyone with mental illness should simply be locked away and other such things.

One I will quote came from a supposed expert talking about autism:

Amador, in discussing the possible role of mental illness in this tragedy, pivoted to Lanza’s alleged autism. “With his autism, his roommate Alex Israel mentioned that he chose not to… he preferred to stay alone,” Amador began, referencing an earlier segment with a longtime classmate of Lanza’s. “Well, actually, a symptom of Asperger’s, and this is one report coming out which may or may not be true, is something’s missing in the brain, the capacity for empathy, for social connection, which leaves the person suffering from this condition prone to serious depression and anxiety.”

Here I am, aching for everyone who was hurt by this criminal, and yet here we have people claiming that I cannot experience empathy. I can, and do, experience empathy. I may not experience it the way everyone else does, and I definitely do not express it in the commonly accepted ways, but that does not mean that I lack it entirely. That “something is missing in [my] brain.” To say so is an insult, is wrong, and is entirely inappropriate in the wake of such a tragedy.

A diary of a mom wrote an eloquent post on empathy and autism on Friday morning, and on Friday afternoon wrote another post about what happens when people demonize those on the autism spectrum:

My post this morning about how dangerous it is to allow society to dehumanize our children? To allow the misperception that because they don’t necessarily express empathy in the way that we expect to see it then it must not exist to stand unchallenged?
Here it is, my friends.
This is the result.
Our children — our beautiful, delicious, and yes, challenged children — are something to be afraid of.

The real point I want to make, though, and I really hope I have not taken too long to make it, is that any supposed link between autism and/or mental illness and violence is simply false. It’s terrible misinformation, damaging to everyone (not just us autistic people, I really mean everyone), and it hurts me personally to see it.

The Autistic Self Advocacy Network (ASAN) released a statement on the subject, here is just a snippet:

Autistic Americans and individuals with other disabilities are no more likely to commit violent crime than non-disabled people. In fact, people with disabilities of all kinds, including autism, are vastly more likely to be the victims of violent crime than the perpetrators.

To back up ASAN, I found a blog post with some stats on crime and mental illness, which again I am not going to quote here as I find them distressing. Still, it is worth a look if you’re interested.

I also found a scholarly study on the topic, which found:

based on the low number of violent patients with Apserger syndrome estimated on the basis of the above studies and the relatively common occurrence of violence in the general population, we do not believe that any true association exists between the two conditions.

Also in the study, the rates of violent behavior they found ranged from only 2.27-5.58% for individuals with Asperger Syndrome. Importantly, the rates for the general population range from 6-7%. Which means if anything, we aspies are LESS likely to be violent than the general population, not more. Yet people continue to perpetuate the idea that people should be scared of us. That we are violent and dangerous and should not be let out in polite society.

Finally, even if we broaden this beyond autism into illnesses that are, in fact, linked to violence, it’s still wrong. Maia Szalavitz put it really well in her article here:

And yet most mentally ill people — even those with conditions that have been linked to violence, such as addictions and schizophrenia — are no threat to anyone other than themselves.

the majority of people with schizophrenia (about 1% of the population) never commit acts of violence.

Schizophrenia doubles your odds of becoming violent, but being a man multiplies your risk by a factor of nine. Yet we don’t stigmatize or reject men for this risk factor; similarly, we shouldn’t treat the mentally ill that way.

No, we really shouldn’t treat the mentally ill that way. Yet all too often, we do.

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