Tag Archives: ASD

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

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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Filed under opinion, rant

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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Filed under issue, ramble

DSM 5

This has been on my list of things to write about since I started my blog, but I’m kind of intimidated to write about it.  Plus, it’s a topic that I honestly don’t really know what to think of, and I haven’t properly managed to form an opinion yet.  Also, I apologize ahead of time for the fact that this post is not going to be fully cited – I’ve been reading articles for months, but have failed to save the links and now I can’t seem to find them again.  hrmph.

So, as you may or may not know, a new version of the DSM is due to be coming out in a few months.  The entire process has been surrounded by controversy right from the start, with a large number of people unhappy with how it’s been handled, both generally and regarding specific things.  One of those specific things is the fact that a number of disorders are now going to be consolidated under the “autism spectrum disorder” umbrella, which will have one set of criteria.

Reactions have been varied, but largely negative.  Some people fear that many people will be excluded and will thus not have access to services they need (and others disagree).  Some people fear that having it all lumped together will cause those on the more severe end of the spectrum to be even more invisible than they already are.

I have a hard time figuring out where I stand on it.  Once I was diagnosed, I finally allowed myself to really start researching into Asperger’s syndrome (AS).  I learned very quickly that information about AS was often blended together with information about autism.  Shortly thereafter, I learned that the reason for this was because the line between AS and autism was blurred and confusing, and no one seemed to be entirely clear on where it was.  I have heard a number of different ideas (some say the difference is in language delay vs not, other people in whether or not there is a desire for social contact, etc) but always with the idea that at best, it’s a rough, general distinction.  I cannot directly speak for diagnoses like PDD-NOS or childhood disintegrative disorder, but I would not be surprised if the same thing holds true for them as well.  So it seems clear to me that the distinctions are flawed and as such, probably not very useful.  Plus, people have already been referring to all these diagnoses together as autism spectrum disorders (ASD), so making it official could be useful.

On the other hand, we are talking about a very broad spectrum, which contains people who are very low functioning and people who are very high functioning.  I have a hard time with the idea that one set of criteria will cover everyone.  Plus, people with different levels of functioning will obviously need different services.  I wonder how having only one diagnosis will change how services will work.  I can see the argument that lower-functioning people will have a harder time getting much-needed services, simply because the diagnosis of ASD will not indicate how severe they are.  Will there be a concept of trying to indicate where people are on the spectrum?  Will diagnoses include functional severity ratings?

Ultimately, I don’t think I can form an opinion until I see what happens.  I have always been rather bad at prognostication, so I’d rather gather more data than forecast doom and gloom based on speculation. Though I will admit, on reading over the proposed new criteria, it is rather a relief to me that I would still qualify.

And hey, look at that.  I managed to find most of my links!

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