Having read my book, a friend from college emailed me to ask if I might consider writing a second.
Write, you say? Me, write again? Well, my interest was perked.
She mentioned that there is a severe lack of reading material on the subject of faith and special needs. The few texts that do touch the subject primarily focus on how parents employ faith to deal with their children who have special needs. But adults with disabilities have been overwhelmingly silent on the topic of fitting into the Church.
I got excited, and oh, the wheels are turning. There's so much to think about! How do I divide the chapters? What topics do I touch upon? With whom do I need to speak to sort out my thoughts, and who might I contact to contribute their own ideas to the book?
If you're interested in answering a few questions that may contribute to the book, shoot me an email at autisticspeaks@gmail.com. Or if you want to tell me of a specific subject you think would be important to include, get in touch with me, and I'll add it to the list (er, I'll... start a list).
Sunday, August 29, 2010
Saturday, August 28, 2010
The aftermath
Forgive me for not going into detail, but you understand, I'm sure. It wouldn't be nice or kind or fair to do so. But I can be general, and you'll get the point.
Bad things happen when I melt down.
In this case, I'm referring to saying things I shouldn't have said to people I shouldn't have said them.
Right now, I get this. In fact, last night, right after the melt down was over, I got it. I prayed, I repented, I fell asleep in peace. But in the heat of the moment, I didn't get it, and now I'm stuck with the aftermath.
I hate that my autism has caused me, yet again, to hurt or anger the people who are most important to me. It's not fair. I completely lose control when I melt/panic, and I say and do stupid things. Leigh even reminded me last night as I was texting her, "Stop now before you say something you'll regret." What she didn't know was that it was too late.
I did everything right with that melt down. Chloe gave me verses of comfort in Isaiah. I prayed. I wrote. I held the kitty. I texted Leigh. And I prayed some more. And still, in between prayers, I managed to screw things up.
I'm starting to lose hope that I'll ever have full control over my words and actions when I melt. Even doing everything right, I made a huge mistake.
Now what? Now I honestly, humbly apologize. Now I promise to try harder next time. Now I hope and pray that the person I hurt can forgive me. I certainly don't deserve it, but I can hope.
And now, I remember this:
Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It is not rude, it is not self-seeking, it is not easily angered. it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. Love never fails.
Bad things happen when I melt down.
In this case, I'm referring to saying things I shouldn't have said to people I shouldn't have said them.
Right now, I get this. In fact, last night, right after the melt down was over, I got it. I prayed, I repented, I fell asleep in peace. But in the heat of the moment, I didn't get it, and now I'm stuck with the aftermath.
I hate that my autism has caused me, yet again, to hurt or anger the people who are most important to me. It's not fair. I completely lose control when I melt/panic, and I say and do stupid things. Leigh even reminded me last night as I was texting her, "Stop now before you say something you'll regret." What she didn't know was that it was too late.
I did everything right with that melt down. Chloe gave me verses of comfort in Isaiah. I prayed. I wrote. I held the kitty. I texted Leigh. And I prayed some more. And still, in between prayers, I managed to screw things up.
I'm starting to lose hope that I'll ever have full control over my words and actions when I melt. Even doing everything right, I made a huge mistake.
Now what? Now I honestly, humbly apologize. Now I promise to try harder next time. Now I hope and pray that the person I hurt can forgive me. I certainly don't deserve it, but I can hope.
And now, I remember this:
Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It is not rude, it is not self-seeking, it is not easily angered. it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. Love never fails.
Thursday, August 26, 2010
Autism is no excuse
Alright; I have to leave for work in half an hour. Let's see if I can squeeze out this post.
The premise is this: I don't think autism is any excuse to be a jerk.
On previously-mentioned message board which I have no longer been visiting, someone wrote a post about a man at his church who was joking around with him. The poster felt that the man was making fun of him, because he laughed a lot. He said that he had tried not answering, but the man continued to try to converse with him. He asked the board for advice about what to do to get the "offender" to leave him alone.
There were four pages of responses, and all but one or two involved things such as the following:
-Call him a swear word and walk away.
-Scream at him, including swear words, and tell him to quit being said swear word.
-Tell one of the higher-ups at church that this man was harrassing him.
-You get the idea.
I posted something like this: "I'm absolutely tired of hearing that people on this board can't make friends, and then this is how you tell someone to deal with a man who may well just be trying to be friendly? Many people with ASD falsely believe that someone is making fun of them; I know I've done it many times in the past. Instead of being flat out rude to this man, try something like this. 'I appreciate that you're trying to make conversation with me, but I find myself not understanding your jokes and it makes me feel as if you're laughing at my expense. I'm guessing that this is not your intent, but it's upsetting me, and I thought you should know.'"
In this case, it was so easy for me to see these people's bad attitude and how it was causing them to act rudely.
Oh, shoot.
You see, that's when I realized something. I'm no better than they are. At work, everyone talks behind everyone else's backs. And lately, when I've been immsensely frustrated, I've been doing the same thing. I talked about J to A, and D to J, and J to D, and C to J, and J to Kand... oh my.
I've been really intrigued by Paul's list of the fruits of the Spirit in Galations 5 lately. To me, they seem like a checkpoint. Are you loving? Joyful? Peaceful? Patient? Kind? Good? Faithful? Gentle? Do you have self-control? You can't show all the fruits of the Spirit without being in the Spirit. If you are in the Spirit, chances are good that you will show its fruits. Some come easily to me... gentleness, for example. Others, like self-control and peace, not so much. So in my prayer journal I wrote down the fruits of the Spirit and how I could demonstrate each one at work, since work seems to be my big stumbling block. Today I will focus on self-control by not speaking words in anger or frustration.
Autism is no excuse to be a jerk, Lydia. Don't forget it.
The premise is this: I don't think autism is any excuse to be a jerk.
On previously-mentioned message board which I have no longer been visiting, someone wrote a post about a man at his church who was joking around with him. The poster felt that the man was making fun of him, because he laughed a lot. He said that he had tried not answering, but the man continued to try to converse with him. He asked the board for advice about what to do to get the "offender" to leave him alone.
There were four pages of responses, and all but one or two involved things such as the following:
-Call him a swear word and walk away.
-Scream at him, including swear words, and tell him to quit being said swear word.
-Tell one of the higher-ups at church that this man was harrassing him.
-You get the idea.
I posted something like this: "I'm absolutely tired of hearing that people on this board can't make friends, and then this is how you tell someone to deal with a man who may well just be trying to be friendly? Many people with ASD falsely believe that someone is making fun of them; I know I've done it many times in the past. Instead of being flat out rude to this man, try something like this. 'I appreciate that you're trying to make conversation with me, but I find myself not understanding your jokes and it makes me feel as if you're laughing at my expense. I'm guessing that this is not your intent, but it's upsetting me, and I thought you should know.'"
In this case, it was so easy for me to see these people's bad attitude and how it was causing them to act rudely.
Oh, shoot.
You see, that's when I realized something. I'm no better than they are. At work, everyone talks behind everyone else's backs. And lately, when I've been immsensely frustrated, I've been doing the same thing. I talked about J to A, and D to J, and J to D, and C to J, and J to Kand... oh my.
I've been really intrigued by Paul's list of the fruits of the Spirit in Galations 5 lately. To me, they seem like a checkpoint. Are you loving? Joyful? Peaceful? Patient? Kind? Good? Faithful? Gentle? Do you have self-control? You can't show all the fruits of the Spirit without being in the Spirit. If you are in the Spirit, chances are good that you will show its fruits. Some come easily to me... gentleness, for example. Others, like self-control and peace, not so much. So in my prayer journal I wrote down the fruits of the Spirit and how I could demonstrate each one at work, since work seems to be my big stumbling block. Today I will focus on self-control by not speaking words in anger or frustration.
Autism is no excuse to be a jerk, Lydia. Don't forget it.
Monday, August 23, 2010
Growing up and other stuff
I went to my "other half's" wedding over the weekend. We grew up going to summer diabetes camp together from the age of 12 onward. She's always been one of my best friends, and in touch or out of touch, I couldn't imagine life without her cheerful presence. It occurred to me, and I mentioned to the people we sat with at the reception, that it's truly worth having the lifelong disesase for knowing Katelyn. I wouldn't trade her for "health" (in quotes because who's to say something else wouldn't just be wrong instead?!). She's a true friend.
He was our camp counselor for many years, and they fell in love over a long time (yes, he's about 10 years older than us, but she has quite a mature mind and always has). It's quite the fairy tale, eh?
I got to talk about work, Elsie, and autism at the wedding with our table. They all seemed very interested (I kept an eye out and tried not to talk for too long...). They laughed and smiled and asked me lots of questions. I told them about my book and wrote down the information on napkins for them. One of the men sitting with us reached across the table and said, "I'd like to shake your hand, if you don't mind. I'm so impressed by everything you've accomplished. It can't have been easy." I felt... well, confused, and kind of neat, and kind of embarrassed. No one has ever asked to shake my hand before. All this to say that I'm not sure I minded :)
In other news, Elsie P and I are doing well. We get cable and phone and internet on Wednesday. Now's a good time to mention that my computer got spyware via Facebook and completely pooped out on me. Mom was nice enough to pay the $100 repair bill and get it all fixed up nice for me to tide me over until we can afford a new computer. I'm very grateful. Anyway, I will only go on Facebook now from the library (not in order to infect their computers but because they have super-strong anti-spyware programs at places like libraries), so you won't be seeing me there as much. Oh, well. That's one way to cure a semi-addiction.
I went to the dentist today and got no less than 20 shots (I stopped counting at 20) in my gums. They did scaling and root planing. And they only did the right side! The numbness was miserable, and the scaling and root planing hurt my ears like crazy, and now I'm all sore. Bring on the ice cream, eh? Mom said, "...and yogurt, and baked potatoes, and milk..." and I said, "And ice cream!" Truth be told, I think that since the numbness is gone I'm good enough to eat most foods at the point, although I did get the obligatory milkshake on my way home.
Off to take care of other business online now then go home to Elsie P!
He was our camp counselor for many years, and they fell in love over a long time (yes, he's about 10 years older than us, but she has quite a mature mind and always has). It's quite the fairy tale, eh?
I got to talk about work, Elsie, and autism at the wedding with our table. They all seemed very interested (I kept an eye out and tried not to talk for too long...). They laughed and smiled and asked me lots of questions. I told them about my book and wrote down the information on napkins for them. One of the men sitting with us reached across the table and said, "I'd like to shake your hand, if you don't mind. I'm so impressed by everything you've accomplished. It can't have been easy." I felt... well, confused, and kind of neat, and kind of embarrassed. No one has ever asked to shake my hand before. All this to say that I'm not sure I minded :)
In other news, Elsie P and I are doing well. We get cable and phone and internet on Wednesday. Now's a good time to mention that my computer got spyware via Facebook and completely pooped out on me. Mom was nice enough to pay the $100 repair bill and get it all fixed up nice for me to tide me over until we can afford a new computer. I'm very grateful. Anyway, I will only go on Facebook now from the library (not in order to infect their computers but because they have super-strong anti-spyware programs at places like libraries), so you won't be seeing me there as much. Oh, well. That's one way to cure a semi-addiction.
I went to the dentist today and got no less than 20 shots (I stopped counting at 20) in my gums. They did scaling and root planing. And they only did the right side! The numbness was miserable, and the scaling and root planing hurt my ears like crazy, and now I'm all sore. Bring on the ice cream, eh? Mom said, "...and yogurt, and baked potatoes, and milk..." and I said, "And ice cream!" Truth be told, I think that since the numbness is gone I'm good enough to eat most foods at the point, although I did get the obligatory milkshake on my way home.
Off to take care of other business online now then go home to Elsie P!
Wednesday, August 18, 2010
In the interest of disclosure
It's 9PM, and Mom and I are hanging out at Starbucks so that I can (hopefully!) talk to Chloe and tell you all what's going on. I only have about a half hour, when Mom will take me back across the street and Elsie will watch our rented movie (Molly: An American Girl).
I wanted to tell you about something that happened at work last night that was both good and bad.
We have a new girl at work. I'm not her biggest fan, exactly, because she drops the "f" word around me all the time (no, seriously, like every sentence!) and she's very abrasive. I'll say things to be friendly and she'll completely ignore me and walk away. I have trouble tolerating rudeness, but I have to work with the girl, so I continue to be nice.
Because she was new and it was only 6 months ago that I, too, was new, I thought I would try to help her. For example, when she asked me what to do with the dogs, I explained and then said, "And make sure you turn the lights off when you're done." Or in another situation, I said, "I'm not sure if anyone's told you that we've stopped feeding the cats at 8pm. We just feed them at 6 and that has to last them until tomorrow. I don't want you to get in trouble, in case you haven't heard." I truly just didn't want her to get in trouble and get yelled at, so I tried to help her out. I would have appreciated it, and did, when I was new. She always said, "I know already."
Well, when I got to work yesterday (Tuesday), my boss said, "Lydia, I need to talk to you."
(Insert fear here.)
Boss: How do you get along with New Girl?
Me: She's alright.
Boss: I just want to explain something to you. If I ask you to hand me a pen, I don't care if you hand it to me this way or that way. I just want the pen. When it comes to this job, I don't care how the work gets done, so long as it gets done. So, you might do something one way, and New Girl might do it another way. As long as it gets done, I let everyone do things how they do them best. Does that make sense?
Me: Yes.
Boss: So, if you see New Girl do something differently than you would do it, that's fine by me. It doesn't worry me, and it shouldn't worry you. Got it?
Me: Got it.
Boss: That's my girl.
So basically, she couldn't have been nicer. New Girl is still swearing constantly and being short with me. I try to be nice....
Me: (walking into New Girl's cat condo that she's cleaning)... Do you need cat litter?
New Girl: Yep.
Me: I'll go get it for you. Everyone hates to get cat litter.
New Girl: Yep.
Me: Well, if it's okay, I'll go get it. I like to carry heavy things like that.
New Girl: (Looks up).
Me: Well, I have autism. I have a lot of little quirks, and one of them is that I like to carry heavy things. It calms me down.
New Girl: Yep.
So now, I feel like an idiot. I thought something would click when I told her.... you know, oh, that makes sense. She's autistic. I get it now. But no sign of that. Nothing. Just "yep." My only fear is that she'll go complain to the boss that I told her. Make sense? No. Stupid? Yes. But as nice as my boss was yesterday, I don't want to get called into her office again tomorrow to be corrected, you know?
Sigh.
Mom's tired and Chloe's not online. Gonna take my mocha frap home and watch my movie with Elsie on the arm of the couch.
I wanted to tell you about something that happened at work last night that was both good and bad.
We have a new girl at work. I'm not her biggest fan, exactly, because she drops the "f" word around me all the time (no, seriously, like every sentence!) and she's very abrasive. I'll say things to be friendly and she'll completely ignore me and walk away. I have trouble tolerating rudeness, but I have to work with the girl, so I continue to be nice.
Because she was new and it was only 6 months ago that I, too, was new, I thought I would try to help her. For example, when she asked me what to do with the dogs, I explained and then said, "And make sure you turn the lights off when you're done." Or in another situation, I said, "I'm not sure if anyone's told you that we've stopped feeding the cats at 8pm. We just feed them at 6 and that has to last them until tomorrow. I don't want you to get in trouble, in case you haven't heard." I truly just didn't want her to get in trouble and get yelled at, so I tried to help her out. I would have appreciated it, and did, when I was new. She always said, "I know already."
Well, when I got to work yesterday (Tuesday), my boss said, "Lydia, I need to talk to you."
(Insert fear here.)
Boss: How do you get along with New Girl?
Me: She's alright.
Boss: I just want to explain something to you. If I ask you to hand me a pen, I don't care if you hand it to me this way or that way. I just want the pen. When it comes to this job, I don't care how the work gets done, so long as it gets done. So, you might do something one way, and New Girl might do it another way. As long as it gets done, I let everyone do things how they do them best. Does that make sense?
Me: Yes.
Boss: So, if you see New Girl do something differently than you would do it, that's fine by me. It doesn't worry me, and it shouldn't worry you. Got it?
Me: Got it.
Boss: That's my girl.
So basically, she couldn't have been nicer. New Girl is still swearing constantly and being short with me. I try to be nice....
Me: (walking into New Girl's cat condo that she's cleaning)... Do you need cat litter?
New Girl: Yep.
Me: I'll go get it for you. Everyone hates to get cat litter.
New Girl: Yep.
Me: Well, if it's okay, I'll go get it. I like to carry heavy things like that.
New Girl: (Looks up).
Me: Well, I have autism. I have a lot of little quirks, and one of them is that I like to carry heavy things. It calms me down.
New Girl: Yep.
So now, I feel like an idiot. I thought something would click when I told her.... you know, oh, that makes sense. She's autistic. I get it now. But no sign of that. Nothing. Just "yep." My only fear is that she'll go complain to the boss that I told her. Make sense? No. Stupid? Yes. But as nice as my boss was yesterday, I don't want to get called into her office again tomorrow to be corrected, you know?
Sigh.
Mom's tired and Chloe's not online. Gonna take my mocha frap home and watch my movie with Elsie on the arm of the couch.
Tuesday, August 17, 2010
Settling
Just letting you know that I spent last night in the new house with Elsie. She's being funny... hiding a lot. But when she's not hiding, she's right in my face. She cried for breakfast at the usual time. For a full hour. You see, she usually eats breakfast at 6:30 AM, when Mom gets up, but I'm trying to slide that back to closer to noon, when I get up instead. Then dinner will move from 5 PM to when I get home around midnight. She needs to change her schedule... but she's sure making it difficult!
It's very weird to me in my own place. I'm not sure how I feel about it yet. Ask me again in about a month, k?
It's very weird to me in my own place. I'm not sure how I feel about it yet. Ask me again in about a month, k?
Sunday, August 15, 2010
Thoughts from my now-empty room
It's official: My mom and Bob and the movers got all my stuff settled into my new house (yes, it's an apartment. Yes, I call it a house. Where I live = my house, k? Good). So I write to you from the family room at home (The new house isn't home yet.), minus most of its furniture. I'm at the card table with a rickety wooden chair. My bedroom has my bed (I took the spare room's double instead of my queen, as the new house has small rooms) and my desk, and that's it. It shall be strange until I get moved over... then, it will be stranger.
Anyway, I didn't expect to go to a wedding and learn about myself, but that's sort of what happened. In no particular order...
- Although my emotions are often confusing to myself and the people closest to me, they can also be totally and completely normal. I got teary at the wedding, just like a bunch of other people.
- A weekend with Leigh encourages and refreshes me like few things do. I believe that being myself, as God created me to be, is the reason for this. I feel this way during worship, with my mom, and with Leigh, and pretty sure nowhere else.
- I'm out of practice for being around my peers. This means that I stand out more than I used to. I think that my world has become so small now that I'm not in college that I've forgotten how to "fake it" around my peers. While the girls (Leigh, her college roommate, and a college friend of theirs) hung out and had a drink or two and did I don't know what, I completely tuned out and read the new Jodi Picoult book in which the main character has Asperger's (for the record, it's... decent, but not fantastic), all 542 pages of it, in one evening. I couldn't even follow their conversation, let alone join in.
- Lack of sleep causes melt downs, just like it used to. I don't think I've been truly short on sleep since I graduated, until this past Friday. I went to bed at 2 AM and got up at 4 AM to get on the bus, and I couldn't get comfortable on the bus to sleep, so I was exhausted by the time we got to the hotel. I skipped my Geodon, which could have something to do with it, but Walmart made me feel sick, and then the prospect of people coming over and being noisy made me start to cry. But I tuned out sufficiently and held it together and went to bed by 10 PM.
- It's a bad idea for me to go places by myself. I leave my wallet at the counter in the Macy's (Leigh grabbed it), leave my phone on the stack of puzzles in the Target (several weeks ago, but my aunt grabbed it), and leave my purse in the dressing rooms. I'm so overwhelmed by lights and sounds and movement that I can't keep track of myself at all. I also get lost easily, which means that crying ensues. And I mean lost as in, if I walk out of the hotel room to go get a soda or ice, as I did once in Disney World, it might take me 2 1/2 hours to find my way back, which that time, it did.
Anyway, the wedding was beautiful (brown and gold with lots of sunflowers), and I'm glad I went. Next wedding is in town on the 21st (next Saturday) for my "other half" from camp growing up. She is marrying our former camp counselor who she has loved since she was a little girl. It's a fairy tale! Not so stressful this time because 1. it's in town and 2. Mom will come. Although I must say, I felt much safer and more sure of myself than I thought I would after being away from Leigh for so long.
A wonderful weekend, a beautiful wedding, the best of friends, and now home to my kitty. Can't ask for more than that.
Anyway, I didn't expect to go to a wedding and learn about myself, but that's sort of what happened. In no particular order...
- Although my emotions are often confusing to myself and the people closest to me, they can also be totally and completely normal. I got teary at the wedding, just like a bunch of other people.
- A weekend with Leigh encourages and refreshes me like few things do. I believe that being myself, as God created me to be, is the reason for this. I feel this way during worship, with my mom, and with Leigh, and pretty sure nowhere else.
- I'm out of practice for being around my peers. This means that I stand out more than I used to. I think that my world has become so small now that I'm not in college that I've forgotten how to "fake it" around my peers. While the girls (Leigh, her college roommate, and a college friend of theirs) hung out and had a drink or two and did I don't know what, I completely tuned out and read the new Jodi Picoult book in which the main character has Asperger's (for the record, it's... decent, but not fantastic), all 542 pages of it, in one evening. I couldn't even follow their conversation, let alone join in.
- Lack of sleep causes melt downs, just like it used to. I don't think I've been truly short on sleep since I graduated, until this past Friday. I went to bed at 2 AM and got up at 4 AM to get on the bus, and I couldn't get comfortable on the bus to sleep, so I was exhausted by the time we got to the hotel. I skipped my Geodon, which could have something to do with it, but Walmart made me feel sick, and then the prospect of people coming over and being noisy made me start to cry. But I tuned out sufficiently and held it together and went to bed by 10 PM.
- It's a bad idea for me to go places by myself. I leave my wallet at the counter in the Macy's (Leigh grabbed it), leave my phone on the stack of puzzles in the Target (several weeks ago, but my aunt grabbed it), and leave my purse in the dressing rooms. I'm so overwhelmed by lights and sounds and movement that I can't keep track of myself at all. I also get lost easily, which means that crying ensues. And I mean lost as in, if I walk out of the hotel room to go get a soda or ice, as I did once in Disney World, it might take me 2 1/2 hours to find my way back, which that time, it did.
Anyway, the wedding was beautiful (brown and gold with lots of sunflowers), and I'm glad I went. Next wedding is in town on the 21st (next Saturday) for my "other half" from camp growing up. She is marrying our former camp counselor who she has loved since she was a little girl. It's a fairy tale! Not so stressful this time because 1. it's in town and 2. Mom will come. Although I must say, I felt much safer and more sure of myself than I thought I would after being away from Leigh for so long.
A wonderful weekend, a beautiful wedding, the best of friends, and now home to my kitty. Can't ask for more than that.
Friday, August 13, 2010
Thoughts from the bus
Countdown: 54 minutes until I see Leigh!
My internet is a bit spotty on the bus, and my feet keep falling asleep from crossing one leg up to hold my computer, but let's see if I can't get some frustrations out in order to pass the time as I ride.
I actively participate in two autism/Asperger's message boards; one is a board for parents of children with ASDs, and the other is a highly-popular board geared toward teens and adults, mainly those with Asperger's. The former, I find, is a great resource where I am accepted and can exercise my brain as I try to help parents to understand their children. I love it there.
The latter attracts... a different kind of poster. At this board, I find the group mentality to be immensely frustration at best. I'm starting to wonder why I even go there, because my voice is lost among the nearly 40,000 members and certainly not valued as it is at the parents' board. My ideas about ASDs veer from the group mentality, and when you combine people who lack social skills with confrontation of ideas with which they do not agree, you get a whole lot of nasty, sometimes.
What, you might ask, are the commonly-held (I refer to them as "Aspie") beliefs which drive me crazy?
1. The world is divided into "us" vs. "them." Either you're "one of us" (read: autistic) or you're an evil NT (neurotypical, aka, non-autistic). "We" are rational, logical, intelligent creatures. "They" are wildly emotional, confusing, mean-spirited beings who do nothing but wish us ill will.
2. "Us" is further divided into "Aspies," "HFAs," and "LFAs." Basically, the idea of functioning labels. I hate to break it to you folks, but functioning labels, for most of us just don't work. First of all, there is no medical definition of high-functioning and low-functioning. Some say it's based on the absence or presence of mental retardation, some say it's based on ability to communicate verbally, others base it on amount of independence. But then what about people like myself, and so many others, who fall into different cagetories on different days, or who have skills that are all over the place? Yes, I can work and drive to some extent, but I need fairly extensive support just to get through a day and will likely continue to do so for years to come. Let's try to describe people in terms of their individual strengths and weaknesses rather than slapping a catch-all label on them that is likely very misleading.
3. Autism is not a disorder, it's just a difference. I believe that many people on this website are subclinically autistic, but having pushed for a diagnosis, have been labeled with Asperger's. They work, they marry, they have children, and then they speak for the entire spectrum when they say, "We're not disordered, we're just different!" The fact of the matter is that we are significantly deviant from the statistical norm (by definition of carrying a DSM-IV label). The world is not going to adapt to us, therefore, if we're going to function, we must learn to adapt to it. Which brings me to my next point...
4. "NTs" are the only reason we can't function in society. Someone on this message board actually said something to the effect of, "Autistic melt downs are always caused by NT misbehavior." Excuse me? I melt down for many reasons, and yes, occasionally it's due to the actions or words of another human being (autistic or not does not matter), but far be it from me to blame my melt downs on others! Also, it matters not whether I live in a society of autistic people, nonautistic people, or no people at all; I would still need considerable help day-to-day.
5. "Curebies" want to eradicate our existence and should be banned. This one is complicated. See, the fear is that if it becomes possible to detect autism prenatally, that mothers will abort their autistic children-to-be. Also, there is the fear that if a cure is discovered that it will be forced upon us. My belief is that while it may someday become possible to prevent autism, I don't think we'll be finding either detection or cures anytime soon at all. We haven't found either for type I diabetes, which is far, far less complicated than something like autism. I don't think anyone is doubting the positives that autistics bring to the world, but what about the ways in which is holds us back? What about those of us that wanted to be, could have been doctors, but due to our social, communication, and sensory difficulties find it almost impossibly stressful just to work 20 hours a week in our favorite place in the world (the animal shelter!). For the record, while I wish a cure would have been available to me as a child, I don't think that I could accept one now. I've become too comfortable and enmeshed in who I am as a person on the spectrum that I wouldn't know what to do with myself. However, I would never seek to withhold that opportunity from someone who did want it.
There is more, but now that I am sufficiently carsick, I'll leave you with that to digest.
Countdown: 33 minutes!
My internet is a bit spotty on the bus, and my feet keep falling asleep from crossing one leg up to hold my computer, but let's see if I can't get some frustrations out in order to pass the time as I ride.
I actively participate in two autism/Asperger's message boards; one is a board for parents of children with ASDs, and the other is a highly-popular board geared toward teens and adults, mainly those with Asperger's. The former, I find, is a great resource where I am accepted and can exercise my brain as I try to help parents to understand their children. I love it there.
The latter attracts... a different kind of poster. At this board, I find the group mentality to be immensely frustration at best. I'm starting to wonder why I even go there, because my voice is lost among the nearly 40,000 members and certainly not valued as it is at the parents' board. My ideas about ASDs veer from the group mentality, and when you combine people who lack social skills with confrontation of ideas with which they do not agree, you get a whole lot of nasty, sometimes.
What, you might ask, are the commonly-held (I refer to them as "Aspie") beliefs which drive me crazy?
1. The world is divided into "us" vs. "them." Either you're "one of us" (read: autistic) or you're an evil NT (neurotypical, aka, non-autistic). "We" are rational, logical, intelligent creatures. "They" are wildly emotional, confusing, mean-spirited beings who do nothing but wish us ill will.
2. "Us" is further divided into "Aspies," "HFAs," and "LFAs." Basically, the idea of functioning labels. I hate to break it to you folks, but functioning labels, for most of us just don't work. First of all, there is no medical definition of high-functioning and low-functioning. Some say it's based on the absence or presence of mental retardation, some say it's based on ability to communicate verbally, others base it on amount of independence. But then what about people like myself, and so many others, who fall into different cagetories on different days, or who have skills that are all over the place? Yes, I can work and drive to some extent, but I need fairly extensive support just to get through a day and will likely continue to do so for years to come. Let's try to describe people in terms of their individual strengths and weaknesses rather than slapping a catch-all label on them that is likely very misleading.
3. Autism is not a disorder, it's just a difference. I believe that many people on this website are subclinically autistic, but having pushed for a diagnosis, have been labeled with Asperger's. They work, they marry, they have children, and then they speak for the entire spectrum when they say, "We're not disordered, we're just different!" The fact of the matter is that we are significantly deviant from the statistical norm (by definition of carrying a DSM-IV label). The world is not going to adapt to us, therefore, if we're going to function, we must learn to adapt to it. Which brings me to my next point...
4. "NTs" are the only reason we can't function in society. Someone on this message board actually said something to the effect of, "Autistic melt downs are always caused by NT misbehavior." Excuse me? I melt down for many reasons, and yes, occasionally it's due to the actions or words of another human being (autistic or not does not matter), but far be it from me to blame my melt downs on others! Also, it matters not whether I live in a society of autistic people, nonautistic people, or no people at all; I would still need considerable help day-to-day.
5. "Curebies" want to eradicate our existence and should be banned. This one is complicated. See, the fear is that if it becomes possible to detect autism prenatally, that mothers will abort their autistic children-to-be. Also, there is the fear that if a cure is discovered that it will be forced upon us. My belief is that while it may someday become possible to prevent autism, I don't think we'll be finding either detection or cures anytime soon at all. We haven't found either for type I diabetes, which is far, far less complicated than something like autism. I don't think anyone is doubting the positives that autistics bring to the world, but what about the ways in which is holds us back? What about those of us that wanted to be, could have been doctors, but due to our social, communication, and sensory difficulties find it almost impossibly stressful just to work 20 hours a week in our favorite place in the world (the animal shelter!). For the record, while I wish a cure would have been available to me as a child, I don't think that I could accept one now. I've become too comfortable and enmeshed in who I am as a person on the spectrum that I wouldn't know what to do with myself. However, I would never seek to withhold that opportunity from someone who did want it.
There is more, but now that I am sufficiently carsick, I'll leave you with that to digest.
Countdown: 33 minutes!
Wednesday, August 11, 2010
Here goes nothin'
You know that song? "Going on a jet plane..." Except I'm not going on a jet plane; I'm going on a bus. And I'm not getting married... my friend Jen is getting married to another J.
In case there was any doubt in your mind, I don't travel well. In fact, I travel so poorly that Mom doesn't really want me to go on this trip. She's afraid I'll fall apart due to the disruption in routine.
But I figured that while I may regret going and the ensuing falling apart, I know I will forever regret it if I don't see Jenny get married. It's too important. I have to try.
So, we're pulling out all the stops. Mom wrote me a Social Story, basically, about the traveling parts of the trip. She labeled all the bus and hotel papers I need and highlighted the important numbers. I got the next Elsie Dinsmore book at the library (#5), and I'm saving it for the trip. I'll bring Tigger and a couple of cats. I'll bring my daily devotional book. I'll even bring my own pillow (after all, the bus leaves at 6-something AM).
Wish me luck!
In case there was any doubt in your mind, I don't travel well. In fact, I travel so poorly that Mom doesn't really want me to go on this trip. She's afraid I'll fall apart due to the disruption in routine.
But I figured that while I may regret going and the ensuing falling apart, I know I will forever regret it if I don't see Jenny get married. It's too important. I have to try.
So, we're pulling out all the stops. Mom wrote me a Social Story, basically, about the traveling parts of the trip. She labeled all the bus and hotel papers I need and highlighted the important numbers. I got the next Elsie Dinsmore book at the library (#5), and I'm saving it for the trip. I'll bring Tigger and a couple of cats. I'll bring my daily devotional book. I'll even bring my own pillow (after all, the bus leaves at 6-something AM).
Wish me luck!
Monday, August 9, 2010
Change
After an 8-hour work day, I don't look for this to be a very coherent post... you've been warned.
I can't remember, and I'm too lazy to go look up, how the DSM puts it. Something about adherence to non-functional routines, maybe? That's the idea. You following?
Well, to that I say, who's calling the shots? My routines are very functional for me, thank you very much. Without them, I fall apart.
Wake up. Lay upside down in my bed. Devotions and prayers. Look for Elsie. Downstairs. 2 Diet Mt. Dews. TV on. Computer on (check personal email, blog email, look to see if Chloe is online and talk to her if she is, check blog, check personal Facebook, blog Facebook, and message board). Switch cats (everyday, I pick 2 of my remaining 11- Leigh has the 12th- cat figurines to accompany me on my journeys). Then, and only then, the day can start.
So what happens when part of my routine changes?
If my morning routine gets interrupted by a phone call, an unexpected potty break, a mess that needs to be cleaned up, then I can (albeit grumbly) insert the necessary diversion and return to my pattern.
Then there are the more permanent things.
One of my favorite fellow bloggers, a mom, has found that it's time for her to stop blogging. I've learned so much about myself through her child. Honestly, I feel like a friend has walked out or maybe as if someone has died. I'm just not ready for it to be over, gone, no more.
Everyone is saying how they're proud and excited that she is following her own path and listened to herself that she needed to stop. I have a heck of a time with things like that. I can't get past how it affects me to process how it's affecting someone else. I can only see the situation my way. Even when I realize I'm being selfish, I can't get past it. It's something frustrates me immensely about myself, but I'm stuck.
I'm so sensitive about... okay, point taken... about everything, that this one little alteration to my day is going to set me back quite a bit.
I think I need to get a little less sensitive. Practice (all 22 years of it) has proved futile. I'm still wretched at transitions and change. I do better if things are taken very slowly, but like this time, it's not always practical to do that.
Anyway, I wish that were all that were on my mind, but it's not. I'll spare you the rest for tonight...
I can't remember, and I'm too lazy to go look up, how the DSM puts it. Something about adherence to non-functional routines, maybe? That's the idea. You following?
Well, to that I say, who's calling the shots? My routines are very functional for me, thank you very much. Without them, I fall apart.
Wake up. Lay upside down in my bed. Devotions and prayers. Look for Elsie. Downstairs. 2 Diet Mt. Dews. TV on. Computer on (check personal email, blog email, look to see if Chloe is online and talk to her if she is, check blog, check personal Facebook, blog Facebook, and message board). Switch cats (everyday, I pick 2 of my remaining 11- Leigh has the 12th- cat figurines to accompany me on my journeys). Then, and only then, the day can start.
So what happens when part of my routine changes?
If my morning routine gets interrupted by a phone call, an unexpected potty break, a mess that needs to be cleaned up, then I can (albeit grumbly) insert the necessary diversion and return to my pattern.
Then there are the more permanent things.
One of my favorite fellow bloggers, a mom, has found that it's time for her to stop blogging. I've learned so much about myself through her child. Honestly, I feel like a friend has walked out or maybe as if someone has died. I'm just not ready for it to be over, gone, no more.
Everyone is saying how they're proud and excited that she is following her own path and listened to herself that she needed to stop. I have a heck of a time with things like that. I can't get past how it affects me to process how it's affecting someone else. I can only see the situation my way. Even when I realize I'm being selfish, I can't get past it. It's something frustrates me immensely about myself, but I'm stuck.
I'm so sensitive about... okay, point taken... about everything, that this one little alteration to my day is going to set me back quite a bit.
I think I need to get a little less sensitive. Practice (all 22 years of it) has proved futile. I'm still wretched at transitions and change. I do better if things are taken very slowly, but like this time, it's not always practical to do that.
Anyway, I wish that were all that were on my mind, but it's not. I'll spare you the rest for tonight...
Thursday, August 5, 2010
Myths about autism: #1
MYTH: I'm the one that lacks social skills.
On Thursdays at work, I work with two women in their early 60s, J and D. For probably 3 1/2 of the past 5 months, I've had it worked out in my head. Both are nice to my face, but D is mean because she tries to dump all her work on me, and J is nice because she stands up for me.
So much for that.
I can't remember what started it, but J got really, really mad at D and now, anytime it's just the two of us, she "confides" in me, which is really just venting her anger. Although I really do agree with most of her frustrations about D, I try not to agree with her to her face because I try not to talk badly about people behind their backs. To be honest, over the past few weeks during which she's been mad, the venting has gotten really old. I avoid being alone with her, because all she does is complain, and I'm uncomfortable with the bad-mouthing.
That was one thing, but now that D has figured out that J is angry, she's started to get angry back. They won't stand in a room together, but every time they have an encounter, both come running to be to complain about it, separately, of course. Sometimes they both run in at the same time, see the other, and run back out...
I hope it doesn't ruin it to say that I do this, but I enjoy doing random acts of kindness at work and other places. For example, I might see D's mop buckets (4 of them) sitting out in the hall so she can come back and dump then refill them with clean water. While she's off doing whatever she's doing, I might take said buckets to the janitor's closet, dump them out, and fill them back up, putting them right back where I found them. When asked about the buckets, I might announce, "The bucket fairy did it." True story, from last week. Because it is D that was driving me nuts, I made sure that D was on the receiving end of my kind acts most often. It puts my heart back in the right place.
The problem is that both J and D have started to slyly push extra work on me. They might do something like chat with friends for an hour, then find that they can't finish their work at the last minute, knowing that I'll help them. I refuse to stop being kind altogether, but I might have to make a rule that I will do my work and only my work. Any extra things I do must be of my own violition, and not because I was asked.
The simplest solution to all this is to sit down with my boss, explain it all, and let her take care of it. Being that she enjoys screaming at people, this is not the route I want to go. That's one way to lose friends, having the boss scream at them for their wrongdoings.
The other, slightly more complicated, possibility, is to
(Insert major melt down that requires waking Mom up at midnight when she has to get up for work the next morning here, due to frustrating evening at work, frozen computer, and slightly incorrectly memorized/copied 10 times bible verse...)
Anyway. The other possibility is to confront J and D with something like this: "I know the two of you are the best of friends, but I happen to like you both. In the future, I would appreciate it if you would refrain from speaking badly about the other person in my presence. It makes me uncomfortable." The bad part about that is that it's unlikely that I'll speak anything nearly so coherent when it comes down to it, and I may well end up confusing them, getting frustrated, and crying.
Still up in the air about what to do about work getting dumped on me. Mom's thinking about what to do with that. I so badly don't want to stop being nice, but I want to do it of my own violition and not because people are backing me into corners about it.
Anyway, that melt down wore me out. Back to copying my bible verse (correctly this time); it's very relaxing.
"I will lie down and sleep in peace, for you alone, O Lord, make me dwell in safety." Psalm 4:8.
On Thursdays at work, I work with two women in their early 60s, J and D. For probably 3 1/2 of the past 5 months, I've had it worked out in my head. Both are nice to my face, but D is mean because she tries to dump all her work on me, and J is nice because she stands up for me.
So much for that.
I can't remember what started it, but J got really, really mad at D and now, anytime it's just the two of us, she "confides" in me, which is really just venting her anger. Although I really do agree with most of her frustrations about D, I try not to agree with her to her face because I try not to talk badly about people behind their backs. To be honest, over the past few weeks during which she's been mad, the venting has gotten really old. I avoid being alone with her, because all she does is complain, and I'm uncomfortable with the bad-mouthing.
That was one thing, but now that D has figured out that J is angry, she's started to get angry back. They won't stand in a room together, but every time they have an encounter, both come running to be to complain about it, separately, of course. Sometimes they both run in at the same time, see the other, and run back out...
I hope it doesn't ruin it to say that I do this, but I enjoy doing random acts of kindness at work and other places. For example, I might see D's mop buckets (4 of them) sitting out in the hall so she can come back and dump then refill them with clean water. While she's off doing whatever she's doing, I might take said buckets to the janitor's closet, dump them out, and fill them back up, putting them right back where I found them. When asked about the buckets, I might announce, "The bucket fairy did it." True story, from last week. Because it is D that was driving me nuts, I made sure that D was on the receiving end of my kind acts most often. It puts my heart back in the right place.
The problem is that both J and D have started to slyly push extra work on me. They might do something like chat with friends for an hour, then find that they can't finish their work at the last minute, knowing that I'll help them. I refuse to stop being kind altogether, but I might have to make a rule that I will do my work and only my work. Any extra things I do must be of my own violition, and not because I was asked.
The simplest solution to all this is to sit down with my boss, explain it all, and let her take care of it. Being that she enjoys screaming at people, this is not the route I want to go. That's one way to lose friends, having the boss scream at them for their wrongdoings.
The other, slightly more complicated, possibility, is to
(Insert major melt down that requires waking Mom up at midnight when she has to get up for work the next morning here, due to frustrating evening at work, frozen computer, and slightly incorrectly memorized/copied 10 times bible verse...)
Anyway. The other possibility is to confront J and D with something like this: "I know the two of you are the best of friends, but I happen to like you both. In the future, I would appreciate it if you would refrain from speaking badly about the other person in my presence. It makes me uncomfortable." The bad part about that is that it's unlikely that I'll speak anything nearly so coherent when it comes down to it, and I may well end up confusing them, getting frustrated, and crying.
Still up in the air about what to do about work getting dumped on me. Mom's thinking about what to do with that. I so badly don't want to stop being nice, but I want to do it of my own violition and not because people are backing me into corners about it.
Anyway, that melt down wore me out. Back to copying my bible verse (correctly this time); it's very relaxing.
"I will lie down and sleep in peace, for you alone, O Lord, make me dwell in safety." Psalm 4:8.
Wednesday, August 4, 2010
Close to my heart
I try not to write about people on my blog without their express permission. I guess I never asked Mom if I could write about her, but she knows I do. Dad knows I blog but seemingly doesn't care. He's certainly never asked me about it, or even what I blog about, so thus far, we haven't talked much about it.
I've mentioned in passing that I have two little half sisters. K is a little bird of a blonde 9-year-old, and M is a slightly more apple-shaped, brunette 7-year-old who is the spitting image of me. Both are absolutely as sweet as can be. I love them more than life itself and would do anything for them. They think I hung the moon in the sky.
K came to church with me from the ages of 2-5 but hasn't in recent years, since I went to college and then switched home churches. I decided that it's time to see if she (and M) want to start coming again, so I emailed my dad. I also included a very important second paragraph, which was as follows:
"I also wanted to tell you the biggest reason why I don’t come over more. K is going into 4th grade, and my 4th graders that I student taught asked their teacher why I was weird, what was wrong with me, etc (and that was when I was putting forth every drop of energy I had into acting “normal”). I think kids that age are becoming socially aware and start to notice even slight differences… things that adults just blow off and accept as eccentricity, you know? I’m afraid K will notice and wonder and think I’m weird. I would like to explain to them why I am the way I am, but I don’t know if (stepmom) would like that, because she doesn’t even think Asperger’s is legitimate, and I don’t want to go against you guys’ wishes for your own kids. Not my place. I’d like to explain to them by saying that I have autism, which means some good things (like that I’m obsessed with cats, and that I write really well, and that I’m a good rule follower), but also some bad things (like I get overwhelmed by people and need quiet time and I worry a lot). That’s all. Let them ask questions if they want, but nothing that’s a big deal. Anyway, what do you think? I just would feel more comfortable if I didn’t worry about what they think…"
I called him when I woke up, and he said that while they might notice that I'm different, they won't care and they'll still think I'm the greatest thing since sliced bread simply because I'm their big sister. While I see his point, I don't understand why I can't explain to them why I'm different. Then again, maybe I do. I know that my stepmom doesn't "believe in" mild autism; she thinks that my mom spoiled me and "ruined" me. Don't worry, I don't believe her for a second. Still, I think my dad has listened to her for so long that he also doesn't believe that I have autism (if he even believes that it exists).
I don't know where I'm going with this. Nowhere, I guess. I'm just extremely frustrated at the whole situation...!
I've mentioned in passing that I have two little half sisters. K is a little bird of a blonde 9-year-old, and M is a slightly more apple-shaped, brunette 7-year-old who is the spitting image of me. Both are absolutely as sweet as can be. I love them more than life itself and would do anything for them. They think I hung the moon in the sky.
K came to church with me from the ages of 2-5 but hasn't in recent years, since I went to college and then switched home churches. I decided that it's time to see if she (and M) want to start coming again, so I emailed my dad. I also included a very important second paragraph, which was as follows:
"I also wanted to tell you the biggest reason why I don’t come over more. K is going into 4th grade, and my 4th graders that I student taught asked their teacher why I was weird, what was wrong with me, etc (and that was when I was putting forth every drop of energy I had into acting “normal”). I think kids that age are becoming socially aware and start to notice even slight differences… things that adults just blow off and accept as eccentricity, you know? I’m afraid K will notice and wonder and think I’m weird. I would like to explain to them why I am the way I am, but I don’t know if (stepmom) would like that, because she doesn’t even think Asperger’s is legitimate, and I don’t want to go against you guys’ wishes for your own kids. Not my place. I’d like to explain to them by saying that I have autism, which means some good things (like that I’m obsessed with cats, and that I write really well, and that I’m a good rule follower), but also some bad things (like I get overwhelmed by people and need quiet time and I worry a lot). That’s all. Let them ask questions if they want, but nothing that’s a big deal. Anyway, what do you think? I just would feel more comfortable if I didn’t worry about what they think…"
I called him when I woke up, and he said that while they might notice that I'm different, they won't care and they'll still think I'm the greatest thing since sliced bread simply because I'm their big sister. While I see his point, I don't understand why I can't explain to them why I'm different. Then again, maybe I do. I know that my stepmom doesn't "believe in" mild autism; she thinks that my mom spoiled me and "ruined" me. Don't worry, I don't believe her for a second. Still, I think my dad has listened to her for so long that he also doesn't believe that I have autism (if he even believes that it exists).
I don't know where I'm going with this. Nowhere, I guess. I'm just extremely frustrated at the whole situation...!
Tuesday, August 3, 2010
Shave and a haircut
1. Goodness knows I've been asked about this at least daily since May (I know; you're just interested, but I really do get asked a lot, both online and in real life). I'm supposed to get the key to my apartment on or near August 11th. So far, no staff, so it should be interested to say the least, for a while. Leigh and (and presumably a hundred or so other people) are going to a wedding from the 13-15th, so I can't move that weekend, and I have a wedding to go to with Mom on the 21st, so we're not exactly sure when/how the actual moving will go, but... we'll figure it out.
2. Autistic Speaks is on Facebook! If you look to your left (I mean on the screen, you silly duck), you'll see a badge that will take you to my Facebook page. You can "like" the blog on Facebook, and I'll do my best to start updating on there when I post on here, so you'll be notified. Ta da!
PS- does anyone get the reference of the title to the post, or is it just me? I hope it's not just me...
2. Autistic Speaks is on Facebook! If you look to your left (I mean on the screen, you silly duck), you'll see a badge that will take you to my Facebook page. You can "like" the blog on Facebook, and I'll do my best to start updating on there when I post on here, so you'll be notified. Ta da!
PS- does anyone get the reference of the title to the post, or is it just me? I hope it's not just me...
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