Who the Frag Am I?

February 26, 2010

On the Love of Change

Filed under: Autism — wtfmi @ 10:09 pm

One of the things that initially convinced me that there was no way I could possibly be autistic is the fact that I really like change. I’d heard that people with autism are resistant to change, but I embrace it — so that couldn’t possibly be me, right?

But I mentioned this one day to my husband … and he snorted.

“You really think you like change? You hate it!”

“What do you mean?” I asked. “You’re the one who hates it. You never want to move, but I love looking at new apartments. You get freaked out when your karate class schedule changes!”

“We’re not talking about me,” he answered. “I know I hate change. But so do you. You won’t even go with me to new restaurants! It’s always Outback or the Greek place.”

I shrugged. “I know what I want is all. Those places are comfortable. But what about moving? That’s a huge change, and you know how much I enjoy it.”

“What do you enjoy about it? Do you like packing all our stuff or lifting the heavy boxes or waiting for the application to clear or worrying about being homeless if things don’t all come together?”

“No,” I said. “All those things suck. But-”

He smirked at me. “So what do you like about it?”

“Well … I like looking at places. I like choosing one. I like figuring out where our stuff will go and unpacking everything in a clean new place.”

“How would you feel if you had to move without having time to plan everything out?”

I shook my head. “That would really suck. I’d hate that.”

“Well there you go. You like spreadsheets. You like maps. You like planning. You like having control over your environment. But you don’t like change.” He paused. “And that’s okay with me. I just wish you’d try new restaurants sometimes.”

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February 19, 2010

On Borderline Personality Disorder

Filed under: Autism, Bipolar Disorder — wtfmi @ 8:02 pm

Yesterday I mentioned that I don’t always agree with my psychiatrist that I have (sub-clinical) bipolar disorder. The criteria don’t quite fit right. There is another disorder with criteria that fit me much better … Truth is, I am afraid that I have borderline personality disorder (BPD).

And I do mean afraid. I’ve been terrified of a BPD diagnosis since I was an adolescent. Being labeled with BPD can be the equivalent of being labeled as a difficult, lying, manipulative bitch. Get branded with BPD and your chances of anyone in the mental health professions believing you ever again go way down. And as it happens, being disbelieved or dismissed is a major sore point for me, perhaps because it happens so often.

(Be aware that I am not saying anything about people with BPD here, only about the attitude of many mental health professionals.)

So yesterday, after posting, I decided to learn more about the underlying intricacies of BPD. I mean, I’d read the DSM-IV criteria before, but I know that the DSM is rather far off when it comes to autism and I assume the same is true for BPD as well.

I spent the next 8 hours reading up on everything I could find online. (The internet contains a lot of iffy information, but by starting with sources you already trust (if available), keeping an eye on your source’s sources, and cross-referencing the information you find, you can at least distinguish patterns in the available information. I also find the net to be a valuable source for the personal experiences of affected people.)

When my husband eventually pried me away from my computer and forced me to eat something, I was awash with new information and new thoughts about patterns of behavior — and I wanted to share it with him. Poor man. I basically brain-dumped everything I’d read on him in a fast-paced thirty-minute lecture, in no particular order, frequently punctuated with the exclamation, “Isn’t this fascinating?!”

But one thing that stood out to me while I was researching — besides the fact that the criteria for BPD are so broad as to be useless, that the shorthand concepts that we often use to describe BPD are not the incontrovertible outcome of those criteria, and that there is precious little actual research on BPD — what struck me was how many of the criteria could just as easily be the outward signs of undiagnosed autism, especially for women on the end of the autism spectrum that appears less challenged with social interaction … well, once you stripped away the whole “difficult, lying, manipulative bitch” thing.

So after dinner I went looking for research on that notion. I didn’t find any (suggestions welcome) but I found a decent number of opinions on it flying around the autism-sphere.

One of the common opinions is that autism and BPD are two entirely separate things that cannot possibly be related, largely because BPD is all about being too sensitive to feelings, too lonely, and too socially manipulative, while autism is all about being insensible to feelings, unable or unwilling to be with other people, and unable to lie or manipulate. Of course, both of these are simplistic to the point of being untrue.

Another opinion I found is that BPD probably contains a number of disorders which are currently all mashed together because we haven’t done enough research to separate out the threads. One of those may be ‘classical’ BPD (although I think we should still take a careful look at the sexist aspects of that definition), while another may be co-morbid with autism or even an outward manifestation of undiagnosed autism.

But the most valuable of the opinions I read was this one: it doesn’t matter. Diagnostic labels are only useful insomuch as they are … well … useful. The BPD label isn’t useful to me while bipolar label is — primarily because it comes with medications which I have personally found to be useful in smoothing out some of my nastier moods.

And the most useful label of all — for me, from my own strictly limited point of view — is the autism label. Because autism has helped me understand myself and my life enormously.

So I’m going to calm down about BPD and stop treating my bipolar disorder as a separate and terrible disease. These are just labels for patterns of behaviors I display, and my behaviors ultimately come from who I am. Sometimes I need help with those behaviors, and sometimes I am happy with them, but in either case what you call them is only useful if it helps me.

February 13, 2010

On Stimming

Filed under: Autism — wtfmi @ 12:12 am

One of my major initial doubts regarding my autism self-diagnosis involved the symptom of stimming. Firstly, I was a bit confused about what stimming actually is. And secondly, I had no idea if it was something I did or not.

The DSM-IV seems to be refering to stimming in the autism criteria when it describes “stereotyped and repetitive motor mannerisms (e.g hand or finger flapping or twisting, or complex whole-body movements)”. Hand flapping sounds like something that would be very obvious (and somehow ominous) and is clearly not something I do, right? (At least not in public, my mind whispers.) And certainly I don’t have any stereotyped and repetitive complex whole-body movements. (Right?)

But finger flapping? Or in my case, finger tapping? Does that count? Or moving from foot to foot? Everybody does this sort of thing, right? Tapping a pencil, or tapping their foot, or twirling their hair in their fingers … so how can I tell if I am ‘legitimately’ stimming?

To answer that question, I turned to YouTube. I was hoping to find images of stimming in action, both so I had some concrete examples and also so I could see more of the context of stimming.

At first I found a lot of videos of what appeared to me to be perfectly normal young children making perfectly normal excited motions. No help there. So I went looking for videos of adults stimming. Ah, that was much better: I found some really helpful videos by autistic adults explaining their various stims, why they stim in different situations, and how they feel about stimming.

Their descriptions of context and emotions helped more than anything else to help me identify my own stims. And yes, it turns out that I do stim.

I do indeed tend to hand-flap around the house when I’m happily excited, although I had never really thought about it at all. (It’s just a thing, ya’know?) I have a highly ritualized game I play with my wedding ring when I’m in a one-to-many talking situation. And that finger tapping I mentioned? Well, I may have over-simplified a bit. I actually have complex finger tapping routines based on prime numbers that I run through when I’m concentrating.

Oh, and I rock quite a bit, too — foot to foot when I am standing, or front to back when I am sitting. Although when sitting I usually keep the amplitude so small that even my husband says he can’t see it. But  I can feel the muscles moving and my balance shifting, which is the part that matters to me. The part that, yes, calms me. In fact, I do a lot of nearly-invisible rhythmic muscle tensing in complex patterns, especially when I’m feeling anxiety.

I absolutely do not feel that I could possibly tell whether someone else is stimming or not. But I am now satisfied that stimming is exactly what I am doing.

Aside #1: One of my favorite videos was by YouTube user gorramdoll, who also blogs at I’M SOMEWHERE ELSE — a blog which I had, quite coincidentally, added to my blog reader earlier that very day. I watched a great many of her videos on AS/ASD, and then went flapping about the house in sheer excitement because so many of the situations and reactions she talked about felt so familiar to me. This flapping was quickly followed by me shouting at my husband, “Come quick! Come see! I’m hand-flapping!” His response: “Yeah? So? You do that all the time.”

(And this is both inappropriate and perhaps somewhat rude, and so I apologize beforehand even though I am going to follow through with my behavior anyway … But man! Is she attractive or what?)

Aside #2: Had this same question come up ten years ago, it would have been a lot harder for me to see in myself. It’s only over the past ten years that I have begun to be comfortable moving my body, publicly or privately. When I was younger, the notion of — for instance — raising an arm above my head for no particular reason while in a grocery store would have sent me into horrified shock. You don’t do that! You just don’t! But my husband, who has ADD, does it constantly. It took me awhile to get used to his freedoms, and a lot longer to start appropriating them for myself.

I do wonder, though, if these attitudes are left over from a forgotten childhood of being told not to stim. They could be — I’ve forgotten an awful lot of my childhood.

February 10, 2010

On Language: Autism vs. Asperger’s

Filed under: Autism — wtfmi @ 5:52 pm

When I think I can get away with it, I tend to use the word ‘autism’ or ‘autistic’ to describe myself, rather than ‘Asperger’s Syndrome’. There are two main reasons for this:

  1. My research so far has led me to the opinion that ‘Asperger’s Syndrome’ is a description of an area of the autism spectrum. I am generally more interested in emphasizing the similarities along the spectrum than the differences. That’s not a political statement, necessarily; what I mean is that I tend to need to say something about the similarities more often than I need to discuss the differences.
  2. ‘Asperger’ is a hard word for me to say. The ‘sp’ combination, followed by a truly ugly ‘er-ger’, is just distasteful. ‘Autism’ and ‘autistic’ are easy words for me to say. ‘Autistic’ is actually quite fun: the sharp t’s and hard c; the bell curve of linguistic stress; the mutated repetition of the last two syllables. For a long time, I simply wouldn’t say words if I didn’t like the way they felt in my mouth. I had to get used to it in some situations, but when I can I will always choose the fun words.

You’ll note, though, that I qualified my statement with, “When I think I can get away with it”. And there are times when I can’t.

Sometimes I need to specifically refer to the area of the spectrum that is associated with, shall we say, less obvious challenge in passing for neurotypical. ‘Asperger’s Syndrome’ is a shorter way of conveying what I mean, especially to an audience who might need me to explain the concepts lurking behind ‘obvious challenge’, ‘passing’, and ‘neurotypical’.

Sometimes I know that a person very explicitly doesn’t share my opinion that ‘Asperger’s Syndrome’ is on the autism spectrum. In order to avoid pointless disagreement, I will use ‘Asperger’s’ while I am talking to that person. My psychiatrist is, unfortunately, one of these cases.

And when I am describing a person, I try to use the language that they use to describe themselves.

A couple other language notes:

  • I tend to drop the word ‘disorder’ in relation to autism. But because ‘autism spectrum disorder’ is the accepted medical language, I can’t always avoid it.
  • I also try to be sensitive about when I am using people-emphasizing language and when I am not. For example, ‘a person with autism’ is a person; an ‘autistic’ is a statistic. Because I really like the word ‘autistic’, though, I also tend to use ‘autistic’ to refer to myself regardless.

And a final note: I am describing how I speak because I think it illuminates some interesting aspects about how I think about autism and Asperger’s Syndrome. These are not prescriptions or proscriptions for others; it’s none of my business how you use your language.

Of course, I say this here. But when it comes to conversation with actual people, especially strangers, I’m lucky to have any control over what comes out of my mouth. *grin*

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