Comments on: Toward a New Sense of Belonging, Part 4: What’s Next? http://www.journeyswithautism.com/2009/05/21/toward-a-new-sense-of-belonging-part-4-whats-next/ Ethics, Disability Rights, and Reports from Life on the Spectrum Fri, 03 Feb 2012 16:32:50 +0000 hourly 1 http://wordpress.org/?v=3.3.1 By: Craig Liley http://www.journeyswithautism.com/2009/05/21/toward-a-new-sense-of-belonging-part-4-whats-next/comment-page-1/#comment-63056 Craig Liley Sat, 11 Jul 2009 21:18:33 +0000 http://www.aspergerjourneys.com/?p=2372#comment-63056 I discovered a few years ago that almost all of my most successful social interactions were virtual. A) Online seems to be the only palce I've sound others like me, so far. B) On the internet, conversations can be slowed down considerably. C) Online, nobody can interrupt. D) Online interaction has almost no nonverbal cues to watch out for. Those few that exist, like smilies, are generally very straightforward and simple. There are times, when we are both overwhelmed, that Susanne and I, even though we are in the same room, go onto our favorite online game to "talk" to each other. I discovered a few years ago that almost all of my most successful social interactions were virtual.

A) Online seems to be the only palce I’ve sound others like me, so far.

B) On the internet, conversations can be slowed down considerably.

C) Online, nobody can interrupt.

D) Online interaction has almost no nonverbal cues to watch out for. Those few that exist, like smilies, are generally very straightforward and simple.

There are times, when we are both overwhelmed, that Susanne and I, even though we are in the same room, go onto our favorite online game to “talk” to each other.

]]> By: John Dale Lyons http://www.journeyswithautism.com/2009/05/21/toward-a-new-sense-of-belonging-part-4-whats-next/comment-page-1/#comment-48189 John Dale Lyons Fri, 22 May 2009 20:39:19 +0000 http://www.aspergerjourneys.com/?p=2372#comment-48189 Looking for Belonging in All the Wrong Places (apologies: Waylon Jennings) I've spent a lifetime blogging for you Supermarkets and small talk chatter, never true Playing an NT's game, hoping to win Telling those sweet lies and losing again. chorus: I was looking for belonging in all the wrong places Looking for belonging in too many faces Avoiding their eyes, looking for traces Of what.. I'm dreaming of... Hopin' to find a friend or a lover God bless the day I discover Some special place, where I can belong When I was alone then, no friends in sight And I did everything I could to get me through the night Don't know where it started or where it might end I turn to a stranger, I thought was a friend (chorus) I came a-knocking at the therapist's door Is s/he the professional I've been looking for? No more looking for belonging in all the wrong places Sensory overload from too many faces Sobbing with sighs, meltdown replaces Perfection.. I'm dreaming of... Now that I found a blog and a blogger God bless the day I discover... Chorus WE are all, lookin' for love Looking for Belonging in All the Wrong Places (apologies: Waylon Jennings)

I’ve spent a lifetime blogging for you
Supermarkets and small talk chatter, never true
Playing an NT’s game, hoping to win
Telling those sweet lies and losing again.

chorus:
I was looking for belonging in all the wrong places
Looking for belonging in too many faces
Avoiding their eyes, looking for traces
Of what.. I’m dreaming of…
Hopin’ to find a friend or a lover
God bless the day I discover
Some special place, where I can belong

When I was alone then, no friends in sight
And I did everything I could to get me through the night
Don’t know where it started or where it might end
I turn to a stranger, I thought was a friend

(chorus)

I came a-knocking at the therapist’s door
Is s/he the professional I’ve been looking for?

No more looking for belonging in all the wrong places
Sensory overload from too many faces
Sobbing with sighs, meltdown replaces
Perfection.. I’m dreaming of…
Now that I found a blog and a blogger
God bless the day I discover…

Chorus

WE are all, lookin’ for love

]]> By: Rachel http://www.journeyswithautism.com/2009/05/21/toward-a-new-sense-of-belonging-part-4-whats-next/comment-page-1/#comment-48085 Rachel Fri, 22 May 2009 16:47:47 +0000 http://www.aspergerjourneys.com/?p=2372#comment-48085 Wow, you are all so amazing! Thank you to everyone for commenting and sending me emails. Every single comment and message has sent my mind working in all kinds of different directions. It's incredible. What's also incredible is that what we have here is a...a....a.....a group (a group!) of people who understand (understand!) one another. Of course, I knew that in my brain, but all the things that people have said in response to this post are bringing home that truth to a deeper place in my soul. Thank you doesn't even begin to express how much that means to me. And just to clarify (because I'm an Aspie, and a Jewish mom, and I worry)...I hope that no one felt that I was criticizing them for blogging anonymously. I wasn't. Not at all! I was talking about the challenges it raises for me, but that doesn't mean I'd want people to change what they're doing. I unreservedly support everyone's right to protect his/her individual and family privacy. I wouldn't want people revealing any information when it doesn't feel right. That's the *last* thing I'd want. Wow, you are all so amazing! Thank you to everyone for commenting and sending me emails. Every single comment and message has sent my mind working in all kinds of different directions.

It’s incredible.

What’s also incredible is that what we have here is a…a….a…..a group (a group!) of people who understand (understand!) one another. Of course, I knew that in my brain, but all the things that people have said in response to this post are bringing home that truth to a deeper place in my soul. Thank you doesn’t even begin to express how much that means to me.

And just to clarify (because I’m an Aspie, and a Jewish mom, and I worry)…I hope that no one felt that I was criticizing them for blogging anonymously. I wasn’t. Not at all! I was talking about the challenges it raises for me, but that doesn’t mean I’d want people to change what they’re doing. I unreservedly support everyone’s right to protect his/her individual and family privacy. I wouldn’t want people revealing any information when it doesn’t feel right. That’s the *last* thing I’d want.

]]> By: Ben http://www.journeyswithautism.com/2009/05/21/toward-a-new-sense-of-belonging-part-4-whats-next/comment-page-1/#comment-48034 Ben Fri, 22 May 2009 14:54:49 +0000 http://www.aspergerjourneys.com/?p=2372#comment-48034 I send the links to your blog posts to my partner on a regular basis, as a way of explaining things in a way that i'm sure i cannot. i feel the same way some days, about being more than a handful for him, and not being able to give out what i'd like (concerts, easygoing nature, socializing, simpler conflict resolution). i get sad, and frustrated, and sometimes feel like it's all just a bunch of whining, that regular people feel pretty much the same way, but hide it better than us. but then i think, meh. typing back and forth with you often gives me a sense of comfort that i may not have had otherwise. i don't really take a lot of comfort in finding others like me, but in finally feeling like i'm not wrong, not damaged, and some things aren't my fault (so i can concentrate on the things that actually are my fault). i don't feel so bad about my limitations as much anymore. i have better words to describe what i'm feeling, and understand better what my loved one is going through, and the translation from AS thinking to regular thinking is easier. so, thanks. i think you're on the right track, anyway. but then, what do i know? ;) Ben I send the links to your blog posts to my partner on a regular basis, as a way of explaining things in a way that i’m sure i cannot.
i feel the same way some days, about being more than a handful for him, and not being able to give out what i’d like (concerts, easygoing nature, socializing, simpler conflict resolution).
i get sad, and frustrated, and sometimes feel like it’s all just a bunch of whining, that regular people feel pretty much the same way, but hide it better than us. but then i think, meh.
typing back and forth with you often gives me a sense of comfort that i may not have had otherwise. i don’t really take a lot of comfort in finding others like me, but in finally feeling like i’m not wrong, not damaged, and some things aren’t my fault (so i can concentrate on the things that actually are my fault).
i don’t feel so bad about my limitations as much anymore. i have better words to describe what i’m feeling, and understand better what my loved one is going through, and the translation from AS thinking to regular thinking is easier. so, thanks. i think you’re on the right track, anyway. but then, what do i know? ;)

Ben

]]> By: James http://www.journeyswithautism.com/2009/05/21/toward-a-new-sense-of-belonging-part-4-whats-next/comment-page-1/#comment-48015 James Fri, 22 May 2009 14:16:18 +0000 http://www.aspergerjourneys.com/?p=2372#comment-48015 Rachel, You're not completely nuts, and you are right in your understandings. Whilst your traits present differently from mine in several areas, I can always empathise with your writing, Rachel. I think this is because I recognise in your writing someone who thinks like me much of the time. I don't come across people like that very often. Coming to terms with things isn't easy, and some weeks and months are going to be better than others. I take comfort in the fact that for me, on the whole I'm far happier and less anxious than I was before I reached my conclusion that I had AS. I have bad days and weeks, but on the whole my journey of understanding has been a fruitful one. From your writing, it's clear to see that on the whole your journey has been a positive one too. Try not to let the difficult days cloud your big picture too much. Rachel,

You’re not completely nuts, and you are right in your understandings.

Whilst your traits present differently from mine in several areas, I can always empathise with your writing, Rachel. I think this is because I recognise in your writing someone who thinks like me much of the time. I don’t come across people like that very often.

Coming to terms with things isn’t easy, and some weeks and months are going to be better than others. I take comfort in the fact that for me, on the whole I’m far happier and less anxious than I was before I reached my conclusion that I had AS. I have bad days and weeks, but on the whole my journey of understanding has been a fruitful one. From your writing, it’s clear to see that on the whole your journey has been a positive one too. Try not to let the difficult days cloud your big picture too much.

]]> By: LizzieK8 http://www.journeyswithautism.com/2009/05/21/toward-a-new-sense-of-belonging-part-4-whats-next/comment-page-1/#comment-47940 LizzieK8 Fri, 22 May 2009 11:53:41 +0000 http://www.aspergerjourneys.com/?p=2372#comment-47940 Been there, done that, have the T shirt.... Yes, sometimes I feel robbed because I can't be like the people on TV. But most of the NTs aren't like the people on TV either. They have a lot more discontent under the surface than we can detect, so the grass is greener on the other side of the fence only when you view it from your side of the fence. Once you get over to the next yard, the grass isn't all that green. If you had a visible handicap, such as a being deaf or blind, in a wheel chair, you'd except your limitations. Yes, we strive to do as much as we can, but my wheel chair bound son, no matter what, isn't going to run a race. As Aspies we have limitations--unfortunately they are almost totally invisible. That's who we are. To accept them and not feel "less than" is the first step towards being comfortable in your own skin. And it's so liberating. Yes, you want to go to the concert. You could go and you'd be miserable. Or you can accept you can't go and just accept it instead of stressing over it. You're taking what enjoyment you have in those few hours and stressing it away. It's not easy, and one has to go through a mourning period for all the things that have to be removed from one's life to avoid meltdowns. But, for me, OMG, it was so wonderful to have a name for why I just couldn't go to any more soccer games that I rejoiced in it instead of being depressed by it. You're really not missing anything by not going to the concert as you couldn't enjoy it if you did go. Yes, you'd like to support your kids and see them perform, but you can't and fussing about it won't change it. Accepting who you are is really the next step. I'm feeling the effects of a new life style change of loosing weight and exercise. I have more energy and think, "I should get a job!" Whoa....why waste all this good energy on trying to pass for normal and stressing out. Just remember what doing all that interaction does to you. Been there, done that, have the T shirt….

Yes, sometimes I feel robbed because I can’t be like the people on TV. But most of the NTs aren’t like the people on TV either. They have a lot more discontent under the surface than we can detect, so the grass is greener on the other side of the fence only when you view it from your side of the fence. Once you get over to the next yard, the grass isn’t all that green.

If you had a visible handicap, such as a being deaf or blind, in a wheel chair, you’d except your limitations. Yes, we strive to do as much as we can, but my wheel chair bound son, no matter what, isn’t going to run a race. As Aspies we have limitations–unfortunately they are almost totally invisible. That’s who we are. To accept them and not feel “less than” is the first step towards being comfortable in your own skin. And it’s so liberating. Yes, you want to go to the concert. You could go and you’d be miserable. Or you can accept you can’t go and just accept it instead of stressing over it. You’re taking what enjoyment you have in those few hours and stressing it away.

It’s not easy, and one has to go through a mourning period for all the things that have to be removed from one’s life to avoid meltdowns. But, for me, OMG, it was so wonderful to have a name for why I just couldn’t go to any more soccer games that I rejoiced in it instead of being depressed by it.

You’re really not missing anything by not going to the concert as you couldn’t enjoy it if you did go. Yes, you’d like to support your kids and see them perform, but you can’t and fussing about it won’t change it.

Accepting who you are is really the next step. I’m feeling the effects of a new life style change of loosing weight and exercise. I have more energy and think, “I should get a job!” Whoa….why waste all this good energy on trying to pass for normal and stressing out. Just remember what doing all that interaction does to you.

]]> By: Kate http://www.journeyswithautism.com/2009/05/21/toward-a-new-sense-of-belonging-part-4-whats-next/comment-page-1/#comment-47747 Kate Fri, 22 May 2009 05:42:30 +0000 http://www.aspergerjourneys.com/?p=2372#comment-47747 There is no such things overdisclosure..... I agree with everything you said as usual. I relate so much. Everything you say about not being able to go out and do things because of AS is how I feel about MCS. Yes, the AS would get in the way too but not a quarter as much as the MCS..... I am so SICK SICK SICK of not being able to go into stores!! I was in town and wanted a bottle of water today and I couldnt go in anywhere to get it. I was so jealous of the me 2 years ago that could walk into any store I wanted, in fact relished walking into any store. When we moved to our house in high school that was by a convenience store I was so happy for the independence and ability to go into a shop whenever I wanted that I would spend half an hour walking around a tiny convenience store. I used to relish any and all shops. They just made me feel good somehow to be in a store , I guess made me feel independent. I used to LOVE grocery shopping. Now like I said.....it might be fun to walk around Newport and look at all the shops and look in the windows and try out 1 or 2 but 95% I can't go in no matter how much I want to, and it drives me crazy if I think about it too much. It drives me crazy to look in the windows and see people sitting and enjoying dinner in a resteraunt I couldn't set foot in even for a minute. And I thought not being able to go into shops because of loud music when I was in college was bad....least I could still go in. It's so hard to be thankful for a life that has nothing in it. I am thankful though that the MCS waited until just about after college to kick in.....so I got almost 4 yrs of being able to explore and be independent..... I'd be much more of a mess otherwise. But 21 was still way too young to be so disabled. I've forgotten what it's like to be able to walk into shops and it hurts so bad sometimes. Sometimes it's amazing how much I don't think about it - like moving to a new town with a million interesting shops I'd love to go into and I don't even really think about in the beginning about the fact that I can't go into them. It's as normal to me as the sky being blue. I focus on the beautiful ocean, and looking at them from the outside, and getting the feel of the city just from knowing what shops are there and imagining I can go in them..... I compensate automatically....and am still thrilled by it. But it's little things like not being able to buy bottled water when I really need it that will really set me off. Other things I can compensate for.....not being able to go into resteraunts bothers me but one can do take out usually..... sometimes one can get people to bring stuff out of stores onto the sidewalk so I don't have to go in, like the candy shop I found in town ..... and natural food stores I can usually do to varying extents.....but it will still drive me to frustration that there is so much I can't do if I think about it. Your blog seems to have brought out a lot of very personal thoughts, wishes and feelings among people. Good writing will do that. I found it inspiring to read the comments of the people above and could relate to them very much to. I am not trying to "one up" you by using my example of MCS but rather sharing it because I am sure you can relate to the feeling of not being able to go anywhere or much anywhere even if for different reasons. It does leave you with a hopeless, depressed, worthless feeling, I agree. I am not sure what to do about it. I try to focus on the good in my life, I do. But the bad keeps piling up. I am tending more and more to depression and anxiety lately, mostly about health related issues I'm not sure what to d about it...... Somehow we have to create a framework for our lives in which we can still have meaning somehow, still feel useful.... That is the most important thing of all but I agree it is hard to do. I would love to speak to you on the phone sometime if you feel like you would like to hear how other Aspies "sound." :) Just email me and let me know if you'd like to ( kgoldfie@gmail.com but you probably already have it). There is a great AS support group in Western MA, I don't know you if you knew that, and that is probably what half an hour from you? Not far at all. I have been in contact with the woman who runs it and she sounds quite nice. Wait, I actually went to one of their meetings once when I was in the area.... Okay it was a horrible choice for a venue but I'm sure they're not all that bad. I talked to a couple members on the phone and they sounded pretty nice. You probably know of it already but let me know if you want more information. Kate There is no such things overdisclosure….. I agree with everything you said as usual.
I relate so much. Everything you say about not being able to go out and do things because of AS is how I feel about MCS. Yes, the AS would get in the way too but not a quarter as much as the MCS….. I am so SICK SICK SICK of not being able to go into stores!! I was in town and wanted a bottle of water today and I couldnt go in anywhere to get it. I was so jealous of the me 2 years ago that could walk into any store I wanted, in fact relished walking into any store. When we moved to our house in high school that was by a convenience store I was so happy for the independence and ability to go into a shop whenever I wanted that I would spend half an hour walking around a tiny convenience store. I used to relish any and all shops. They just made me feel good somehow to be in a store , I guess made me feel independent. I used to LOVE grocery shopping. Now like I said…..it might be fun to walk around Newport and look at all the shops and look in the windows and try out 1 or 2 but 95% I can’t go in no matter how much I want to, and it drives me crazy if I think about it too much. It drives me crazy to look in the windows and see people sitting and enjoying dinner in a resteraunt I couldn’t set foot in even for a minute. And I thought not being able to go into shops because of loud music when I was in college was bad….least I could still go in. It’s so hard to be thankful for a life that has nothing in it. I am thankful though that the MCS waited until just about after college to kick in…..so I got almost 4 yrs of being able to explore and be independent….. I’d be much more of a mess otherwise. But 21 was still way too young to be so disabled. I’ve forgotten what it’s like to be able to walk into shops and it hurts so bad sometimes. Sometimes it’s amazing how much I don’t think about it – like moving to a new town with a million interesting shops I’d love to go into and I don’t even really think about in the beginning about the fact that I can’t go into them. It’s as normal to me as the sky being blue. I focus on the beautiful ocean, and looking at them from the outside, and getting the feel of the city just from knowing what shops are there and imagining I can go in them….. I compensate automatically….and am still thrilled by it.
But it’s little things like not being able to buy bottled water when I really need it that will really set me off. Other things I can compensate for…..not being able to go into resteraunts bothers me but one can do take out usually….. sometimes one can get people to bring stuff out of stores onto the sidewalk so I don’t have to go in, like the candy shop I found in town ….. and natural food stores I can usually do to varying extents…..but it will still drive me to frustration that there is so much I can’t do if I think about it.

Your blog seems to have brought out a lot of very personal thoughts, wishes and feelings among people. Good writing will do that. I found it inspiring to read the comments of the people above and could relate to them very much to. I am not trying to “one up” you by using my example of MCS but rather sharing it because I am sure you can relate to the feeling of not being able to go anywhere or much anywhere even if for different reasons.

It does leave you with a hopeless, depressed, worthless feeling, I agree. I am not sure what to do about it. I try to focus on the good in my life, I do. But the bad keeps piling up. I am tending more and more to depression and anxiety lately, mostly about health related issues I’m not sure what to d about it…… Somehow we have to create a framework for our lives in which we can still have meaning somehow, still feel useful…. That is the most important thing of all but I agree it is hard to do.

I would love to speak to you on the phone sometime if you feel like you would like to hear how other Aspies “sound.” :) Just email me and let me know if you’d like to ( kgoldfie@gmail.com but you probably already have it). There is a great AS support group in Western MA, I don’t know you if you knew that, and that is probably what half an hour from you? Not far at all. I have been in contact with the woman who runs it and she sounds quite nice. Wait, I actually went to one of their meetings once when I was in the area…. Okay it was a horrible choice for a venue but I’m sure they’re not all that bad. I talked to a couple members on the phone and they sounded pretty nice.

You probably know of it already but let me know if you want more information.

Kate

]]> By: millie http://www.journeyswithautism.com/2009/05/21/toward-a-new-sense-of-belonging-part-4-whats-next/comment-page-1/#comment-47587 millie Thu, 21 May 2009 23:49:05 +0000 http://www.aspergerjourneys.com/?p=2372#comment-47587 well...my personal view is you should say these things and if others who are not ASD see it as overdisclosure...then so be it! i get great solace and identification from this blog and from the info you provide. take care and speak soon, rachel. from millie x well…my personal view is you should say these things and if others who are not ASD see it as overdisclosure…then so be it!

i get great solace and identification from this blog and from the info you provide.
take care and speak soon, rachel. from millie x

]]> By: Intern in Israel http://www.journeyswithautism.com/2009/05/21/toward-a-new-sense-of-belonging-part-4-whats-next/comment-page-1/#comment-47545 Intern in Israel Thu, 21 May 2009 21:32:30 +0000 http://www.aspergerjourneys.com/?p=2372#comment-47545 I understand. And while I've never met you, and you don't know my name (!), I'm here. And you know what? It feels really good to type that and not say it to someone whom I don't know very well that will then likely ambush me every day by stopping by and being too needy/friendly which would simply exhaust me. It's good to know that there are others out there that want contact and relationships, but also need lots of space and downtime. I understand. And while I’ve never met you, and you don’t know my name (!), I’m here. And you know what? It feels really good to type that and not say it to someone whom I don’t know very well that will then likely ambush me every day by stopping by and being too needy/friendly which would simply exhaust me. It’s good to know that there are others out there that want contact and relationships, but also need lots of space and downtime.

]]> By: Jennifer Gardner http://www.journeyswithautism.com/2009/05/21/toward-a-new-sense-of-belonging-part-4-whats-next/comment-page-1/#comment-47522 Jennifer Gardner Thu, 21 May 2009 20:28:39 +0000 http://www.aspergerjourneys.com/?p=2372#comment-47522 Rachel, I talk about you all the time to my hubby. I enjoy relating your feelings to him. You both have so much in common! Not long after his diagnosis I asked him if he felt dissappointed that his "ways" were not unique in the sense we once thought. He answered "No, because I at least know now that I am not crazy". hehe I am a woman who has been providing financially for my family for the last 7 years. I have successfully pushed my hubby through college (trust me when I say, he agreed with your blog about academia) and he is now ready to get a job doing what he loves. Guess what he did while I worked? He took care of our son from birth to 4, cooked dinner, kept me sane & went to college full time. I must brag that he is a degreed Biochemist! And he was the one that didn't feel worthy sometimes. There is a reason you need time to unwind, reset and create. You spend so much time adapting, loving and helping that you need to rest. I can't speak for your husband but I can bet that what you think is troublesome for him is actually one of the driving reasons that he loves you. Rachel,

I talk about you all the time to my hubby. I enjoy relating your feelings to him. You both have so much in common! Not long after his diagnosis I asked him if he felt dissappointed that his “ways” were not unique in the sense we once thought. He answered “No, because I at least know now that I am not crazy”. hehe

I am a woman who has been providing financially for my family for the last 7 years. I have successfully pushed my hubby through college (trust me when I say, he agreed with your blog about academia) and he is now ready to get a job doing what he loves. Guess what he did while I worked? He took care of our son from birth to 4, cooked dinner, kept me sane & went to college full time. I must brag that he is a degreed Biochemist! And he was the one that didn’t feel worthy sometimes. There is a reason you need time to unwind, reset and create. You spend so much time adapting, loving and helping that you need to rest. I can’t speak for your husband but I can bet that what you think is troublesome for him is actually one of the driving reasons that he loves you.

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