I know I've written about this before, but for me it's a very important point that cannot be discussed often enough. It's one of those topics that makes a real distinction be known between parents of autistic children and autistic children themselves. It's the topic of 'name-giving', 'definition' and so on.
On an online forum there has been several debates, finally emerging into a thread of its own whether or not one should say 'person with autism' or 'autistic'. It seems to be that the parents are all for the first, while the afflicted themselves prefer the latter.
Instead of trying to arrange the thoughts in my heads, I'd like to refer to the words of Jim Sinclair, which I was just recently made aware of through Coming out Asperger - Diagnosis, Disclosure and Self-Confidence (and if you haven't already, you should pick up a copy). At the same time, it makes me happy to see that he uses the argumentative style as I've done previously, in "Thoughts on words" and online elsewhere, where I've argued that I am, for instance, "a photographer" and not simply "someone who takes pictures".
Monday, July 7, 2008
Sunday, July 6, 2008
Small talk online
Did you know that people with ASDs and other neurological "disorder" have a different way to use IM than NTs? Generally speaking.
After being online for the last 10 years (more so during some periods, but very much so during the last two years), I've had quite a few IM conversations. For a time of 3 years I ran a very active server where I hosted a few hundred GBs of a few shows, one that is impossible to get on DVDs due to the sheer number of episodes. Especially during that time, I was contacted, often several times a day, by people who either had access or by people who wanted access. And they all had one thing in common; how they started the conversation.
As you are most likely able to figure out by now, these people talked to me in a polite and friendly manner. They said hello, asked how I was doing - you know, dragging it out, sometimes for several topics before the real reason why they contacted me came up.
(Of course, I don't know whether or not anyone of these could be diagnosed with a neurological "disorder", and I cannot remember every single conversation)
Then, this year when I came in "closer contact" with others "like me", I've noticed a different way to talk online. Sure, sometimes we say hello to each other, but most of the time there's no beating around the bush; a window pop up and either there's a simple exclamation, a question of some sort or a link to an article or discussion the sender found interested and wanted to share.
Without dissing the NTs in my life, I prefer the latter way of contacting others through IM. This unnecessary talk about everything else makes me very impatient and restless - either you want something or you don't. Online small talk is generally a hassle.
After being online for the last 10 years (more so during some periods, but very much so during the last two years), I've had quite a few IM conversations. For a time of 3 years I ran a very active server where I hosted a few hundred GBs of a few shows, one that is impossible to get on DVDs due to the sheer number of episodes. Especially during that time, I was contacted, often several times a day, by people who either had access or by people who wanted access. And they all had one thing in common; how they started the conversation.
As you are most likely able to figure out by now, these people talked to me in a polite and friendly manner. They said hello, asked how I was doing - you know, dragging it out, sometimes for several topics before the real reason why they contacted me came up.
(Of course, I don't know whether or not anyone of these could be diagnosed with a neurological "disorder", and I cannot remember every single conversation)
Then, this year when I came in "closer contact" with others "like me", I've noticed a different way to talk online. Sure, sometimes we say hello to each other, but most of the time there's no beating around the bush; a window pop up and either there's a simple exclamation, a question of some sort or a link to an article or discussion the sender found interested and wanted to share.
Without dissing the NTs in my life, I prefer the latter way of contacting others through IM. This unnecessary talk about everything else makes me very impatient and restless - either you want something or you don't. Online small talk is generally a hassle.
Wednesday, July 2, 2008
Whoa, feelings
Feelings
Whoa, feelings
Whoa, feelings
Get out of my life
Remember that song by Offspring? I suddenly got stuck in my head this morning while I was lying in bed, pondering on this with feelings.
After the test I took last week, I have started to come to the realization that I am very much not on touch with my feelings. Don't read that as if I do not have feelings, because I do - and lots of them, too. My body knows my feelings, but my mind does not. A recent example is a fight I had with my mom where I stared crying, and I did not know I was going to, and did not really register that I did at first. My body is great at letting the world know what I'm feeling. I can begin to cry without "feeling" anything before it happens. When I am poorly, my voice gets slightly whiny, and I have a hard time controlling it.
This is what I do not get with other people - why do they seem so content (which I've learn means 'in a state of peaceful happiness') all the time when my body reveals more or less anything that goes on inside?
To me it seems like other people are not feeling anything at all, and that they are the ones with a "problem" since I have no idea what is going on inside them since their bodies do not act as mine does. I have learned to read body language, at least a bit. I know when my husband has to go to the bathroom, for one. But other than that, I am clueless.
After denying for months that autistics does not have Theory of Mind, and that we do have empathy, I have finally understood it - after lots of reading. I think I have been so dead set against those ideas because I have thought it to mean that we are stupid, or bad people, or... something. But it does not. Just as I have problems understanding whatever is going on inside me, we have problems relating to what others could be feeling right now unless they strongly let us know, either through words or bodily functions like crying. Of course, such actions require that we act, and that is a whole other problem, is it not?
As always, I am unable to follow a blog post through, and offer a conclusion. However, again, that is not really my aim for this blog *wink*
Whoa, feelings
Whoa, feelings
Get out of my life
Remember that song by Offspring? I suddenly got stuck in my head this morning while I was lying in bed, pondering on this with feelings.
After the test I took last week, I have started to come to the realization that I am very much not on touch with my feelings. Don't read that as if I do not have feelings, because I do - and lots of them, too. My body knows my feelings, but my mind does not. A recent example is a fight I had with my mom where I stared crying, and I did not know I was going to, and did not really register that I did at first. My body is great at letting the world know what I'm feeling. I can begin to cry without "feeling" anything before it happens. When I am poorly, my voice gets slightly whiny, and I have a hard time controlling it.
This is what I do not get with other people - why do they seem so content (which I've learn means 'in a state of peaceful happiness') all the time when my body reveals more or less anything that goes on inside?
To me it seems like other people are not feeling anything at all, and that they are the ones with a "problem" since I have no idea what is going on inside them since their bodies do not act as mine does. I have learned to read body language, at least a bit. I know when my husband has to go to the bathroom, for one. But other than that, I am clueless.
After denying for months that autistics does not have Theory of Mind, and that we do have empathy, I have finally understood it - after lots of reading. I think I have been so dead set against those ideas because I have thought it to mean that we are stupid, or bad people, or... something. But it does not. Just as I have problems understanding whatever is going on inside me, we have problems relating to what others could be feeling right now unless they strongly let us know, either through words or bodily functions like crying. Of course, such actions require that we act, and that is a whole other problem, is it not?
As always, I am unable to follow a blog post through, and offer a conclusion. However, again, that is not really my aim for this blog *wink*
Tuesday, July 1, 2008
Parents are always to blame
I am currently re-reading Coming out Asperger: Diagnosis, Disclosure and Self-Confidence. Liane Holliday Wiley has the first chapter, which centers around telling or not telling someone you're an aspie.
A few pages into the chapter, she discuss how you can build an aspie person's self-confidence, and admits to being a little overprotective of her own kids. Instead of doing what she did, she propose a few ideas on how to make children aware of their own potential, that they are capable human beings, from a young age. Some of these are early on to let the child help decide what the family should eat, let the child pick out its own bed covers, try things the AS might prove difficult (for some, dance), and such. All in all she has ideas on how aspies can be well-prepared for the real world with the help of their parents.
My parents never knew I am aspie, and thus I was brougt up like a NT-kid, more or less at least, as you'd imagine. This included that I was expected to be able to do everything my sister did, and maybe even more, as I was the youngest. From an early age, I sliced bread and fed myself. I was early able to dress myself. 7 years old, I came home from school at noon, made two hot dogs (with boiling water) and looked after myself till they came home later in the afternoon.
Them not knowing (although they might have suspected something) has made me the person I am today. I can blame them for all kinds of shit that has gone wrong in my life, but instead of that, I'd like the readers of this post to know that sometimes bringing a child up like any other (presuming you don't know something's "off, etc), is a good thing. I consider myself to be "high-functioning", for the most part at least, and I owe that to my parents expectance that I am able to look after and care for myself.
A few pages into the chapter, she discuss how you can build an aspie person's self-confidence, and admits to being a little overprotective of her own kids. Instead of doing what she did, she propose a few ideas on how to make children aware of their own potential, that they are capable human beings, from a young age. Some of these are early on to let the child help decide what the family should eat, let the child pick out its own bed covers, try things the AS might prove difficult (for some, dance), and such. All in all she has ideas on how aspies can be well-prepared for the real world with the help of their parents.
My parents never knew I am aspie, and thus I was brougt up like a NT-kid, more or less at least, as you'd imagine. This included that I was expected to be able to do everything my sister did, and maybe even more, as I was the youngest. From an early age, I sliced bread and fed myself. I was early able to dress myself. 7 years old, I came home from school at noon, made two hot dogs (with boiling water) and looked after myself till they came home later in the afternoon.
Them not knowing (although they might have suspected something) has made me the person I am today. I can blame them for all kinds of shit that has gone wrong in my life, but instead of that, I'd like the readers of this post to know that sometimes bringing a child up like any other (presuming you don't know something's "off, etc), is a good thing. I consider myself to be "high-functioning", for the most part at least, and I owe that to my parents expectance that I am able to look after and care for myself.
Friday, June 27, 2008
Yes, I am awfully slow in updating about the things I say I'll update about. At the end of the spring semester, I said I had a lot of blog entries in my RSS-feeder, that I'd read through them, and then give my opinion on things presented in those blogs. A few weeks on, and I still have done so.
Masks - oh dear
"Now, I want to get rid of them. Partly because they are so hard to maintain, I have to remember all these masks for so many different people, it gets too tiring, and very stressful when I have to deal with two people who are usually not seen together – I have to mix their individual masks and come up with a super mask that fits both people in that situation."
This rings so true! I've done this for as long as I can remember. A lot of this has had to do with my family. As I might, and might not have mentioned before, my family has never allowed for any feelings to be exhibited, for anything "bad" to be out in the open, and any mental issues or disabilities, like Asperger's, would simply not be accepted. This is why I've never stood up for myself when it comes to all the years I've been, often severely, depressed. Neither have I told my mom about me having Asperger's. I'm not sure I ever will.
More specifically, I've had masks for different people all my life. This has to do with my family situation, as I've indicated above. There's one mask for acquaintances, one for my mom, one for my husband, and so on. It has to be mentioned that my husband is silently and carefully pulling the mask further and further over my head, almost removing it completely. I think this is a good thing, but at the same time, I need these masks in order to function. I've blogged about this previously, a few months back, on how I function very well when it's on "my terms".
Masks are, for me, tightly intertwined with the need to mentally prepare for situations, people and possible conversations. Different people require different masks. If I am to talk to a person working in the uni administration, I need to plan for what to say - in which order should I make my needs be known? How can I best explain what I need help with? This preparation calls for a strong and confident mask.
Preparation for lectures and seminars is sort of similar. It's not good, I know, but I prepare for lectures and seminars by sitting next to someone I know will be prone to throwing their hands in the air to answer questions. Sitting next to someone like that will, most likely, have as a consequence that I will not be asked any questions.
"I have decided that this year, I want to make a fresh start."
This is definitely easier said than done.
After becoming aware of my Asperger's, I've felt more confident in myself than ever before. My entire life, I've kept in the shadows, always being the good girl who does what she's told. I don't think there's anything wrong with that, but this good girl-syndrome has kept me in a place where I've never wanted to stand up for myself.
Finding out about being on the spectrum coincided, time-wise, with having to be on my own for 6-7 months. During this time I have had to be my own advocate. It's been hard, but it's been necessary, both for practical reasons and for becoming the person I am today.
During this time I've made quite a few new acquaitances, and I have tried my best to make them without the help of my masks. I have succeded as well - when my husband returned home and met with a friend I made during his absence, I noticed that there weren't that big a clash between the mask I wear with his and the mask I wear with her. It's strange, but a welcome feeling.
Masks - oh dear
"Now, I want to get rid of them. Partly because they are so hard to maintain, I have to remember all these masks for so many different people, it gets too tiring, and very stressful when I have to deal with two people who are usually not seen together – I have to mix their individual masks and come up with a super mask that fits both people in that situation."
This rings so true! I've done this for as long as I can remember. A lot of this has had to do with my family. As I might, and might not have mentioned before, my family has never allowed for any feelings to be exhibited, for anything "bad" to be out in the open, and any mental issues or disabilities, like Asperger's, would simply not be accepted. This is why I've never stood up for myself when it comes to all the years I've been, often severely, depressed. Neither have I told my mom about me having Asperger's. I'm not sure I ever will.
More specifically, I've had masks for different people all my life. This has to do with my family situation, as I've indicated above. There's one mask for acquaintances, one for my mom, one for my husband, and so on. It has to be mentioned that my husband is silently and carefully pulling the mask further and further over my head, almost removing it completely. I think this is a good thing, but at the same time, I need these masks in order to function. I've blogged about this previously, a few months back, on how I function very well when it's on "my terms".
Masks are, for me, tightly intertwined with the need to mentally prepare for situations, people and possible conversations. Different people require different masks. If I am to talk to a person working in the uni administration, I need to plan for what to say - in which order should I make my needs be known? How can I best explain what I need help with? This preparation calls for a strong and confident mask.
Preparation for lectures and seminars is sort of similar. It's not good, I know, but I prepare for lectures and seminars by sitting next to someone I know will be prone to throwing their hands in the air to answer questions. Sitting next to someone like that will, most likely, have as a consequence that I will not be asked any questions.
"I have decided that this year, I want to make a fresh start."
This is definitely easier said than done.
After becoming aware of my Asperger's, I've felt more confident in myself than ever before. My entire life, I've kept in the shadows, always being the good girl who does what she's told. I don't think there's anything wrong with that, but this good girl-syndrome has kept me in a place where I've never wanted to stand up for myself.
Finding out about being on the spectrum coincided, time-wise, with having to be on my own for 6-7 months. During this time I have had to be my own advocate. It's been hard, but it's been necessary, both for practical reasons and for becoming the person I am today.
During this time I've made quite a few new acquaitances, and I have tried my best to make them without the help of my masks. I have succeded as well - when my husband returned home and met with a friend I made during his absence, I noticed that there weren't that big a clash between the mask I wear with his and the mask I wear with her. It's strange, but a welcome feeling.
Wednesday, June 25, 2008
Another disorder that is often co-morbid with autism is Alexithymia - a disorder where you have a hard time figuring out just what you're feeling and describing feelings to others. A link on a forum led me to a test where you can "check" if you've got it. My score came to 154.
This and That - nothing much to update about
If you are a recurring guest here, in my blog, you might have noticed the stat counter I've places on the right hand side. It's interesting, in a way - the first few days after I added it, the number of visits was to be expected; a few each day. But, after I merged this blog with my other one and changed the name on my profile, or, "stopped hiding", it's gotten quite a few unique hits as well as recurring visitors. The blog also gets quite a few page reloads - and I can say, not all of them are mine...
The question remains as to why.
* I haven't written any new posts since last Wednesday.
* The last post wasn't a comment to any news article about going-ons in the autistic society - it was on Autistic Pride Day, and a short one at that.
* I don't advertise for this blog anywhere. It's linked to from a couple of profiles on a few message boards, but I doubt that's where the traffic is coming from.
* I haven't posted a comment anywhere, linking to it.
If you're one of these visitors (which you must be since you're reading this right now), please indulge me and tell me how you found me. Do you follow me on a regular basis?
In other news, there are no other news. Life is slowly going by and nothing much happens. We (my husband and I) attended a wedding last Saturday. I'd been a bit anxious about the dinner and party due to social issues. They pretty much came true - I had a hard time "small talking" when my husband wasn't there (he had a flu and came and left the room "as it pleased" him - bless him, he wasn't feeling good), but that was to be expected. My initial problems making social is when no one initiates it. I can small talk, but only if someone talks to me first. The conversations usually die down pretty fast, as they did on Saturday; someone asks me how long I've known the bride, we talk a bit about that. Then they ask what I study in uni, I tell them. And then it goes silent. I have no idea how to ask something back. They usually leave at that point. I don't blame them.
At Aspies for Freedom, there is a new thread on recommendations of books on autism. So far non-fiction books were recommended, but today when I checked the thread, someone had recommended The Speed of Dark, which is a sci-fi book set somewhere in the future where a cure for autism has been found. It can only be used on babies, but a cure for adults are about to be found, and the main character is given the opportunity to take it. I've added it to my wishlist there as I am in desperate need for something to read and because it sounds very, very interesting. And, since I'm rude and all that, here is a link to my wishlist. If nothing else, I have a wide range of autism books on there - maybe you'll find something you want to read. Although the book is no longer on my wish list (since I got it), I can highly recommend Unstrange Minds - Remapping the World of Autism. It offers a "history" of autism - from when it was first "discovered" by Kanner and Asperger, how it was viewed as a form of schizophrenia, how autistics were treated, but also a good insight into how a few selected countries view autism today. It also explains why there is no "autism epidemic". A good read. Get it today.
The question remains as to why.
* I haven't written any new posts since last Wednesday.
* The last post wasn't a comment to any news article about going-ons in the autistic society - it was on Autistic Pride Day, and a short one at that.
* I don't advertise for this blog anywhere. It's linked to from a couple of profiles on a few message boards, but I doubt that's where the traffic is coming from.
* I haven't posted a comment anywhere, linking to it.
If you're one of these visitors (which you must be since you're reading this right now), please indulge me and tell me how you found me. Do you follow me on a regular basis?
In other news, there are no other news. Life is slowly going by and nothing much happens. We (my husband and I) attended a wedding last Saturday. I'd been a bit anxious about the dinner and party due to social issues. They pretty much came true - I had a hard time "small talking" when my husband wasn't there (he had a flu and came and left the room "as it pleased" him - bless him, he wasn't feeling good), but that was to be expected. My initial problems making social is when no one initiates it. I can small talk, but only if someone talks to me first. The conversations usually die down pretty fast, as they did on Saturday; someone asks me how long I've known the bride, we talk a bit about that. Then they ask what I study in uni, I tell them. And then it goes silent. I have no idea how to ask something back. They usually leave at that point. I don't blame them.
At Aspies for Freedom, there is a new thread on recommendations of books on autism. So far non-fiction books were recommended, but today when I checked the thread, someone had recommended The Speed of Dark, which is a sci-fi book set somewhere in the future where a cure for autism has been found. It can only be used on babies, but a cure for adults are about to be found, and the main character is given the opportunity to take it. I've added it to my wishlist there as I am in desperate need for something to read and because it sounds very, very interesting. And, since I'm rude and all that, here is a link to my wishlist. If nothing else, I have a wide range of autism books on there - maybe you'll find something you want to read. Although the book is no longer on my wish list (since I got it), I can highly recommend Unstrange Minds - Remapping the World of Autism. It offers a "history" of autism - from when it was first "discovered" by Kanner and Asperger, how it was viewed as a form of schizophrenia, how autistics were treated, but also a good insight into how a few selected countries view autism today. It also explains why there is no "autism epidemic". A good read. Get it today.
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