Tag Archives: opinion

Ramble on Stimming

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

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

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

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

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

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

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

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That sympathy vs. empathy video

Ok, so I finally watched that video that I’ve been seeing everywhere.

Here it is, by the way:

I’ve been a little trepidatious about it because I was worried it would approach empathy and sympathy in a way that I find icky.

I was right.

So ok, the video made some really good points. The actions they are labeling as “sympathy” really are harmful actions that lots of people engage in, but shouldn’t. It’s true that people shouldn’t try to make it better or point out a silver lining or similar sorts of things.

Regarding empathy, I also agree that it’s true that people should do their best to be with you in your dark place. I mean, I wrote about this.

But then there was that part when Bear goes down into the hole where Fox is, and says “I know what it’s like down here.” And the video lost me right there. I HATE it when people claim they understand. Really. It’s awful. Because most of the time they DON’T understand. Not really. When Bear joins Fox in the dark hole, he’s being a good friend. He’s joining the fox and sharing his experience. That’s awesome. But Bear has a ladder. And a lightswitch. And went down there of his own free will, while Fox had the ground just fall away. And that FUNDAMENTALLY changes the equation. It’s like spending a day in a wheelchair and then claiming to totally understand what it’s like needing a mobility aid all the time. You may be able to temporarily share the experience, but you can always leave it behind and go back to your life where all this, whatever “this” is, is not a thing. Honestly, I really hope you get why this is not a good thing. When you have power over your circumstances, and you can leave whenever you want, it is not the same as it is for a person who is stuck there.

Now, maybe at some point in the past Bear had a similar experience. Maybe he was in a hole with no ladder or lightswitch, and can draw on that memory to have an idea of what the fox is going through. But even then, his experience was different because it was HIS EXPERIENCE, and not Fox’s experience.

Then there was “Ooh… um… want a sandwich” Giraffe. Another thing I’ve talked about over on my blog is the fact that we CANNOT assume that a person’s ability to express themselves is equivalent to a person’s ability to think. Or feel. For all we know, “want a sandwich” lady is, in fact, feeling all of those empathy feelings. She could very well be struck deeply by what was shared, and care a lot. And maybe she just doesn’t know where to go from there, and out comes something awkward. I know I’ve been in that position. I’m sure lots of people on the spectrum have been in that position (look up autism and hyper-empathy if you want to read more on that). All that video did was demonize the awkwardness, and push a bunch of assumptions about her connection or lack thereof based on a few words. So not cool.

Though I also want to add – maybe that wasn’t awkwardness at all. Sometimes when I’m getting really wobbly, a sandwich is exactly what I need, and my bf has “check to see if she’s eaten” high on his list of things to look at if I’m doing badly. And in some situations – not all of them, but some – doing some “at least’s” can be helpful in terms of perspective taking. I mean, if a person is struggling with depression, they might lose perspective. Their time horizon might be really short (this happens to me). For those people, in those situations, giving some perspective can be VERY useful.

I actually like to use the word sympathy (or similar) in these situations. Because I’m not going to go claiming I understand, as though my experiences are the same as someone else’s. They aren’t. So I can say “I have been through something similar and I can sympathize with your experience. I know how much it sucks. I am here for you, and I care.”

But then, maybe I haven’t been in a similar hole. I’ve never personally experienced racism. Occasional bigotry, sure. Sexism, definitely. Ableism and… um… mental-illnessism, totally. But racism? Nope. My ability to understand the experiences of a person who is experiencing racism is far far less than my ability to understand the experiences of another autistic person, or another person who deals with depression or anxiety. I can, however, draw on my own experiences of oppression, believe their experiences, and connect that way. All the while admitting that no, I don’t really understand. I can’t really understand. I can believe, I can sympathize (yep, the dirty word again!), I can care, and to whatever degree I can attempt to connect, but that’s pretty much as far as it goes. I also like it on the other end. The first comment in this here post started with the commenter sympathizing with me, and it was exactly right. It was wonderful. Sympathy is NOT some icky thing embodying harmful behaviors.

So yeah. This video bothered me. I agreed with most (though definitely not all) of the commentary on the basic behaviors, but I hate how it used the word “sympathy” as something dirty and bad. I also hate that it’s supposed to be good to claim to understand. Plus, the fact that it contrasted one person’s actions to another person’s feelings was rather problematic.

People sometimes claim to understand me. They usually don’t. They are drawing from their own experiences – which are different from mine – and then trying to make a connection. Which is fine and good, but it usually comes with assuming that my experiences are like theirs. Which they aren’t. So yes, connect with me. Yes, bring up similar experiences that lead you to be able to sympathize with me. But STOP saying you understand.

Finally – that video never did stop to mention, even briefly, the idea of just checking in with the person to see what THEY need or want. I hate it when people say “I understand.” Maybe someone else loves it. Asking me if I need a sandwich can be incredibly helpful to me, but maybe someone else would find it insulting. Some people find assistance getting perspective really helpful. Other people do not. There is no one right answer, and just finding out from the person in question what they need should be considered very important. That the video didn’t even bother to mention it was downright disturbing.

If that’s what empathy is – pretending to understand when you honestly don’t, and doing what you think is “empathic” rather than actually checking in with the person – I want no part of it.

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OneRightAnswerItis

There is a condition I want to warn you all about. It’s as old as humanity – for as long as people have had a concept of answers, there’s been a concept of right answers. And as long as there’s been a concept of right answers, there’s been OneRightAnswerItis, or ORAI.

What is OneRightAnswerItis, you ask? Well, let me tell you about it!

What is OneRightAnswerItis?

ORAI is characterized by a person’s narrow, limited thinking that any problem can only have one solution, any question can only have one answer, that there is only ever one right choice. ORAI is usually accompanied by an odd lack of confidence around one’s own choices. A person suffering from ORAI will feel personally challenged or attacked whenever someone makes a different choice than they made. Even more so if the different choice was the result of significant thought, or if the different choice had a positive outcome. This is because they believe there is only one right answer, and if someone else’s choice was good or correct, it must mean that their choice was bad or wrong. ORAI seems to make a person blind to nuance, context, and the simple truth that different things work for different people.

What are the symptoms and warning signs of OneRightAnswerItis?

ORAI expresses itself through speech and behavior. A few examples would be:

Responding defensively if you decide to not do a thing that they do. “Why, is my way not good enough for you?”

Insisting that you try the things that worked for them, regardless of context, personal history, or actual need.

Confusion and denial when presented with the idea that different people have different needs with different solutions.

ORAI can also be insidious, and is rarely presented universally in any person. ORAI is very common when it comes to religious choices, yet very rare in regards to job choices. A person can be very open-minded to multiple choices when it comes to treating the flu, yet present severe ORAI when it comes to treating or helping autistic people.

I think I or a loved one might have OneRightAnswerItis!

Not to worry! ORAI is very treatable and with the right approach can be eliminated! The first step to treating ORAI is by far the most difficult – recognizing that you have it. Unfortunately, ORAI comes with firm (if oddly fragile) conviction of one’s own rightness, so it can be easy to say “oh, I don’t have ORAI, I really AM right!”

However, if you see other people making different choices than you are, and doing so with apparent forethought, consider that maybe they are also right. Consider that maybe there are actually multiple right answers.

The underlying emotional triggers to ORAI will stick around even after admitting the problem, but they are much easier to address when you recognize it. After that it’s a matter of learning to feel good about your own choices because they were right for you – not because other answers or other people are wrong or bad. Some people can find this a difficult way to think, but it is very rewarding once achieved.

Be on the lookout for OneRightAnswerItis. It can be a sneaky thing, but it is very disruptive when it takes root.

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Temple Grandin

I recently went to a talk by Temple Grandin while she was in my city. There seem to be many divided opinions about her, but I found the talk interesting enough to talk a bit about my impressions of her.

I have seen some people accuse her of being ablist, because of her focus on getting autistic people working. I am not entirely sure where I stand on this issue, but my sympathies are leaning towards Temple, despite my own lack of a job. Her attitude is, basically, that being on the autism spectrum is not a good enough reason to not work. The basic stance she seems to take on the matter is that a person should find A Thing that they can do, and make a job or career out of doing that Thing. Yes, sometimes it will be boring and just work, but other times it will be awesome, and the more you do it the more likely it will be that you will get to do the awesome.

She talked a little bit about the need for accommodations, though I would have liked more focus on how to get those accommodations in when dealing with bosses who think you are simply being unreasonable, or in the face of disbelief or uncooperativeness. As far as I can tell, she definitely believes that accommodations should happen to make it possible to work, but she did not say anything about how to actually get them.

Interestingly (to me), she rather explicitly stated that simply opting out of office politics or work social events or such things is a definite option for those of us who simply cannot handle it. That we should be able to do Our Thing, and not worry so much about chatting by the water cooler. In theory, I definitely agree with her. However, I would have liked to see an acknowledgement of the impact refraining from politics and socializing can have on a person’s career, and some talk on how to deal with that.

I was off in a side room for this talk (which, by the way, was awesome. I am so glad that divided people up like that, so I had to deal with a minimum of crowds of people), but if I had been in the main room she was in and had processed quickly enough to come up with questions on the spot, I think there are some questions I would have wanted to ask her:

Having a job consisting of The Thing that I do is a great thought, but how can I do that while dealing with a world in which jobs are increasingly generalized, asking people to do a wide variety of tasks? Specialization seems to be becoming less and less of a thing, at least in terms of hiring.

What is the best way to ask for accommodations, especially if one is dealing with unsympathetic bosses or coworkers?

How should we navigate opting out of socialization and office politics in a world that is demanding so much networking and socialization in jobs?

Moving back into my own impressions, she also stressed the importance of getting children talking as early as possible. I’m honestly not sure I agree with that one. I definitely believe finding a way for children to communicate as early as possible is important, and I can see the argument that talking is the method of communication that most people are familiar and comfortable with, but I think things like tablets or typing  or picture boards and such are also viable options. I am inclined to say that speech should be our first choice, but it should not be the only option. However, while I see people accuse Grandin of focusing on speech to the exclusion of other things, when I looked at her website to find verification, I instead found encouragement to find some way, any way, to communicate. “If a non-verbal child is frustrated because he/she cannot communicate, he/she should be given a means to communicate, such as a picture board or picture exchange.  There are many new apps available for iPads and other tablets for communication.” So perhaps I took her encouragement to speech in her talk too literally.

More generally, she used gestures while speaking far more than I was expecting. That actually threw me for a loop at first. She quite direct in how she spoke, but she still spoke with quite a lot of humor. I noticed that she touched and smoothed her hair rather often, and she also frequently touched her face around her eyes. I found myself wondering if those gestures were a stim for her.

I also took note of a few points of how she spoke. When I watched Temple Grandin, the movie, with commentary on I noticed that her speech sounded rather stilted and almost a little forced. Her speech was smoother in her talk than I remembered from the movie. From both the movie and from the talk I noticed that Temple seems to have various phrases and sentences that she says the exact same way, word for word, every time she says them. I realized that I am accustomed to people finding new ways to say the same things, but not Temple. It gave me the impression that she makes some limited use of scripts in her formulation of sentences. Finally, when she answered people’s questions, it seemed to me that she often did not actually answer the question that had been asked, but answered something related to the topic that had been asked about. That lead me to speculate if it might be related to her extreme visual-based thinking, and if the answers she gave were more about the images the questions put in her head, rather than about the literal interpretation of the words said. Similarly, I noticed that sometimes when answering questions her answers drifted a bit, in an associative kind of way.

Overall, I found the talk interesting and I am very glad I went. My general impressions are positive, but I do wish she spoke in more depth about some things, with more acknowledgement of how much of the world I live in does not seem open to her solutions and some talk about how to deal with that, and the intersections between autism and other issues.. Still, I think I’d be interested in going to another of her talks if she’s ever in my city again.

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Lieutenant Barclay

Lieutenant Reginald “Reg” Barclay

Fair warning – I am about to get my geek on and talk about Star Trek yet again. What can I say, I like Trek.

Not too long ago I read an article on startrek.com that was Jordan Hoffman’s rather negative take on the character Lt. Reginald ‘Reg’ Barclay III, or just Barclay for short. For those of you who perhaps aren’t quite so obsessed with Star Trek (ST) as I am, Barclay was a character first introduced in the Star Trek: The Next Generation episode Hollow Pursuits. Barclay is a very different sort of fellow from what we had gotten used to in ST. Unlike the legions of perfect people, Barclay is flawed. He is shy, he is anxious, he has phobias. He is awkward, he stumbles over his words, he is deeply unsure of himself especially in terms of interacting with other people.

Hoffman views the Barclay character as a Mary Sue; not as an authors wish fulfillment character, but as the writer’s idea of what sort of character ST fans could or would relate to. “whether it was true or not, the whole endeavor seemed like a network exec was making fun of me. By which I mean us – the Star Trek fans. “Oh, those dweebs who never get picked for the soccer team, man, they’re gonna’ love this guy. A holodeck addiction? He’s one of them!” “ He views Barclay as an insult – especially early Barclay, in his first introduction.

As will probably come as no surprise, my take is rather different. Though I will initially admit – I could, right away, identify with Barclay and his troubles. I, too, am shy and anxious and awkward.

A good, though brief, explanation of some of Barclay’s troubles, and mine, can be found in a conversation Barclay has with Chief Engineer Geordi LaForge:

BARCLAY: Being afraid all of the time, of forgetting somebody’s name, not, not knowing… what to do with your hands. I mean, I, I am the guy who writes down things to remember to say when there’s a party. And then, when he finally gets there, he winds up alone, in the corner, trying to look comfortable examining a potted plant.
GEORDI: You’re just shy, Barclay.
BARCLAY: Just shy… Sounds like nothing serious – doesn’t it? You can’t know.

I know what it’s like to feel those things, and I know what it’s like to have people judge me for them. While he was certainly a rather extreme characterization of these things, it was still nice to see something like this amidst all the hordes of Perfect People we had gotten so far. This is a point I will return to later.

Hoffman comments, regarding the first time he saw Hollow Pursuits, “I instantly knew that the episode was going to end by, basically, everyone giving Barclay a big hug and letting him feel good about himself.” While the episode can certainly be viewed that way, I see it as an over simplification. Throughout the episode we also follow the rest of the crew and how they react to Barclay. Mostly, the react with derision and mockery. They call him “Broccoli” behind his back and at one point, Captain Picard accidentally does so to his face. Clearly, no one knows what to do with this guy, so they treat him as beneath them. As lesser, as unworthy of the basic respect and decency they extend to everyone else. If we are going to talk about character flaws, that sort of behavior definitely qualifies. They are being cruel and at some points, outright bullying.

Much of the episode is also, therefore, devoted to various members of the crew needing to overcome their own prejudices, and learn to look at other people with more compassion and empathy. This is shown beautifully in a conversation that takes place between Guinan, the ship’s bartender/listener and the aforementioned Geordi. (If you’re feeling particularly obsessive, you can read the entire conversation here, scroll down to section 14A)

GEORDI: Maybe I didn’t make myself clear… Barclay, he’s always late… he’s nervous… nobody wants to be around him…
GUINAN: If I had the feeling that nobody wanted to be around me, I’d probably be late and nervous too.
GEORDI: *frowns* Guinan, that’s not the point…
GUINAN: Are you sure?

I think that particular bit of conversation really exemplifies what is going on here. Geordi is looking for reasons to judge Barclay. To take his personal dislike of the man and make it “right” and that Barclay is “wrong,” and Guinan is pointing out the problems with that. So while the episode certainly did show Barclay struggling with and overcoming certain select parts of his own issues, it also shows his crewmates struggling with their own biases and reactions to him. And yes, the episode does end with the crew basically giving Barclay a big hug, but the journey to get there took place on both sides and everyone, even the esteemed Captain Picard, had to take a look at themselves and see the harm that they were doing.

Overall, I like this look at anxiety and social awkwardness. I like the open admission that the blame cannot fall entirely on the person who is anxious, that it is only good and right to meet people halfway, and that even “perfect” people can have prejudices that they need to overcome.

And speaking of Perfect People, at the end of the episode Barclay has made steps forward, but he is not “fixed.” He stays anxious and shy and awkward, and while he matures and improves throughout his future appearances on The Next Generation and Voyager, he is always different and somewhat apart from everyone else. He is also, importantly, brilliant at what he does and whether we like it or not, a valuable member of the crew. I appreciate the nod ST gives to the fact that you do not have to be a Perfect Person to be able to meaningfully contribute to society and those around you. You can have a strong society, a strong crew, without it being made up entirely of those Perfect People. There is room for all of us, and we do not necessarily have to be forced to Be Like Everyone Else.

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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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How empathy works for me

Picture by geofones on flickr

Empathy seems to be a fairly popular topic amongst autism bloggers, for reasons which include certain autism “experts” and their opinions on the matter, and certain unfriendly ways that autism is depicted in the media. I’ve written once before about problems in how we use the word and all the things it can mean, but I have yet to opine on autism and empathy directly. I am still solidly in the stage of thinking through how it all works for me and am not prepared to make broader statements about empathy and autism, but I can certainly blog about myself easily enough.

So I pose the question to myself: just how does empathy work for me? Rather predictably, the answer is not short and simple simply because empathy seems to mean so very many different things.

The simplest version is the ability to read facial expressions. I’ll be honest, I’m not so great at that. I can determine basic expressions, like smiles and frowns and furrowed brows, but I often seem to miss subtleties. The way I once put it is that when seeing cues and such from other people, I will often see 2+2=4. Unfortunately, it may have actually been 2.3+2.7=5 and I simply could not see that .3 and .7, so my conclusion was off. So this is definitely an area where it could be said that I struggle with empathy.

If empathy is about caring about the feelings of others, than I have no real problems. I care about people a lot. A whole lot. I am not always particularly good at expressing it (actually, I am often quite poor at it, sadly) and I rarely know what to do in response, but I do care. If empathy means caring, then I am quite empathic. On the other hand, if empathy means knowing what to do, then I am not particularly empathic at all.

If empathy means feeling what other people feel then… actually, this one is tricky. I’m not sure. I do not seem to automatically feel what people around me are feeling; at least not all the time. I can and do, however, imagine myself in the place of someone else, and imagine what I would feel were I in their position. This is not an infallible method, though, as what I feel is not always going to be what other people will feel. Of course, it’s not infallible for other people either, and I have had multiple unfortunate encounters with neurotypical people who seem to use this method, but got tripped up when I turned out to be different from them. It does not appear to be only autistic people who struggle with empathy in that way, it’s just that neurotypical people have the privilege of knowing that most people will respond to input similarly to themselves, while autistic people tend to be very much different. That said, I am able to see the world from the perspective of other people; I just have to work at it a bit. So I guess my answer to this one is “sort of” but I am more aware of it’s shortcomings than many neurotypical people.

There is another area that is rather more woo-like, so I’m a little bit hesitant to write about it. That being – that I feel the presence of other people as pressure. Attention of a person is even more pressure, like standing in a stream of water. When I’m in public, I feel all the people around me as though they are pushing on me. This was actually a significant problem when I was younger, and I spent years trying to figure out how to build walls around me to keep that pressure at bay, with mixed success. That feeling of pressure from people around may or may not actually convey useful information to me, and the amount and type of pressure can vary wildly from person to person and situation to situation. If I’m not careful, it can be overwhelming (and sometimes is even if I am careful). I have no idea if this would qualify as a form of empathy or not, or even if many people would be inclined to believe me. Nonetheless, there it is, and it is definitely one of the reasons I pull away from groups and crowds, and sometimes even individuals. It can get intense.

So if a person were to ask me if I experience empathy, the simplest answer would be yes, but after that I would need to ask them precisely what they mean by empathy. It is not actually a simple word.

To anyone who feels like answering a question: how would you say that empathy works for you?

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SIB

This is a topic I’ve been thinking about writing for a while now, but it’s another one that is fairly challenging for me to write about, both in terms of my own history and in the fact that it’s a fairly delicate subject matter, and I hold unorthodox views.  It is also a potentially triggery subject matter for readers, but I will try to write it in as un-triggery a way as I can manage.
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more on labels and identity

So apparently some people out there think that everyone on the autism spectrum should call themselves “autistic” and that words like “aspergers” are harmful and should go away.  I’m still undecided on the whole “autistic” thing, but I do know that I don’t think the arguments for it are good ones.

There are some Aspie supremacists out there.  I’ve run into one of them on the internet.  Once.  And by the time I ran into that person, he was already re-thinking his stance.  Of course, it’s still possible that there are hoards of them out there and I just haven’t run into them yet.  In any case, one of the arguments against the word “aspergers” is that anyone who uses it is, deliberately or not, aligning themselves with these people and reinforcing their point of view.  I don’t buy it.  There are a small number of extremist feminists out there too – the ones who really are the “man-hating female supremacist” stereotype that gets bandied about.  I do not, however, think that everyone who uses the word “feminist” is trying to align themselves with the extremists, nor do I think the the extremists gain power by all the reasonable people who use the word.  In the same way, I don’t think it applies to aspergers either.

I’m just going to quote another point: “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.”

I’ll be honest.  I have absolutely no idea what this point is trying to say, and as such, I really can’t refute it.  I am simply too confused to be able to do so.  I do, however, know that I tend to feel alienated when someone tries to tell me how I should identify.

One of the big arguments refers to the DSM-IV (which means the argument may be moot by now, but anyway): “The only current diagnostic difference between receiving a diagnosis of Asperger disorder or Autistic disorder is that in order to be diagnosed with Asperger disorder, an individual must have “no clinically significant general delay in language.”1 There is no other difference in diagnostic criteria”

This is something I’ve heard a lot of.  A WHOLE bleeding lot of.  I finally decided to look it up for myself, and I discovered that there are, in fact, differences beyond the language thing.  The first section, “social interaction” of Autistic Disorder is exactly the same as the first section of Asperger’s Disorder.  Identical.  However, immediately after that autism has a whole section regarding “qualitative impairments in communication” that asperger’s lacks.  It has the oft-cited optional delay or lack of spoken language, but also includes impairments in the ability to initiate or sustain a conversation, stereotyped and repetitive use of language, and a lack of spontaneous make-believe play.  None of those things are in the Asperger’s criteria.

Then there is another section, “restricted repetitive and sterotyped patterns of behavior,” that is once again the same in both criteria.

However, beyond that there are two more differences between the criteria.  Autism requires that there is some sort of delay in functioning with an onset prior to three years of age.  That alone means I likely could not be diagnosed with autism under the DSM-IV.  As far as I know, my social challenges really started to show up in kindergarten, which is definitely too old for autism.

Additionally, along with language delay being contra-indicated in Asperger’s, there must also be no clinically significant delay in the development of self-help skills, adaptive behavior, and curiosity about the environment.  So a person that had significant delays in learning to use the toilet or dress themselves would not be able to get a diagnosis of Asperger’s.

I will grant that the differences are few.  I will grant that the line can be blurry.  Nonetheless, it is simply not true to state that language delay is the only difference between the two diagnoses.

Getting back to calling it all autism, one thing I have wondered about is how those who are diagnosed with autism feel on the matter.  It has been surprisingly challenging for me to find much of anything on the topic, but I did eventually find this:

“I have a classic autism. I was nonverbal when I was young, but learned to verbalize. I do not have Asperger’s Syndrome.”

So I can say that there is at least one autistic person out there who is likely not in favor of everyone on the autism spectrum calling themselves “autistic.”

Finally, I really can’t be in favor of telling other people what to call themselves or how to identify, especially given how murky this area is.  Much as it’s uncool when a neurotypical barrels in and tells a bunch of aspies and autistics that we should really call ourselves “persons with aspergers/autism” (I plan to write more on that in the future), it’s also uncool to tell me that I don’t get to call myself an Aspie, even though I’m diagnosed with Asperger’s and that’s the word that fits me best.

That said, I am increasingly wondering how the new criteria for the DSM-V is going to impact this particular social debate.  I also really wish I could find out more about how people with “classic autism” feel or think on the matter.  As it is, I think I’m going to continue to call myself an Aspie for the time being.

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labels

I’ve decided to just go ahead and be opinionated today.

I like labels.  I like them a lot.  Now, I’m probably biased since I really like words in general – words are such amazing fantastic things, with meanings and layers of meaning and nuance and connotations and all sorts of things.  Words are cool.  There are all sorts of types of words, and most of those types are fabulous, including labels.

I have found that there are many people out there who dislike labels.  The usual reasons given are that labels pigeonhole people, or put people in boxes, or define people and therefor limit them.  Personally, I very strongly disagree with all of that.  Ok, I agree that those are bad things to do, but I disagree that labels do that.  People do that and use labels as an excuse, but in my experience people don’t really need labels to do it.  There are all sorts of excuses; labels are just one of many.

Personally, I find labels incredibly useful.  Using a label to define a person is a stupid way to use it.  Using a label to describe a person, on the other hand, is very useful indeed.  It’s helpful to me personally to have labels for myself – like, for instance, Asperger’s.  My life has gotten so incredibly much better since I got that label!  It has helped me to understand myself better – to give myself a context that helps to explain my oddities.  It doesn’t define me or pigeonhole me or limit me.  Instead, it describes me.

Interestingly, as much as some people claim to be against labels, they only seem to be against some labels.  For instance, I have yet to have anyone complain to me about labels when I describe myself as a crafter.  Or as a cat person.  Or as a woman.  Or as a rider.  Or as any number of words I use to describe myself.  I have never managed to figure out what it is that is suppose to make some labels bad, and other labels not bad.  So instead I just don’t worry about it – labels are good.  Sometimes people use them in bad ways.  That is not the fault of the label, it is the fault of the person who used it.

In other news, TACA has yet to get back to me, nor have they corrected their erroneous “fact.”  Given that it’s been almost a week, I do not consider this a good sign.

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