Journeys with Autism » Blog Archive » Toward a New Sense of Belonging, Part 4: What’s Next?

May
21

Toward a New Sense of Belonging, Part 4: What’s Next?

Filed under: Anxiety, Belonging, Communication, Community, Friendship, Sensory Processing Disorder (SPD), Sensory Processing Issues;

What’s next? I have no idea. I’d hoped to say something comforting and insightful about where to go from here, but I’m full of profound sadness, loneliness, and doubt today.

I’m looking back at all the times that I thought, “This time, everything will be okay. I’ll just change my house/neighborhood/community/job/synagogue/therapist/diet/exercise program, and I’ll fit in. I’ll belong. Everything will be all right. All this struggle will be done.”

Onward and upward and all that jazz. Living in the land of hope, where my therapist told me that I was going to soar. She gave me so much hope. I can’t blame her. I imagine it’s worked a time or two for other people.

But it didn’t work for me. And in these last few days, I’ve realized that I’ve spent my whole life trying to be an NT, and that working like crazy at my therapy was part of it. Now that I can’t be an NT, what do I do? I only know what I can’t do. I can’t go to my daughter’s concert tonight. I’d give almost anything to leave the sensory overload at home and be there. She and her best friend are not just in the chorus; they’ll be in front, singing their hearts out.

But I can’t go. The sensory overload would happen in the first five minutes. My stepson is taking a video of the whole concert to distribute to anyone who wants it. So, I’ll get one of those and at least get to see the performance that way, but…still. You know.

Last year at this time, we had just moved to Vermont, and I had all kinds of plans. I was getting dressed up for work, going to the movies, going out for dinner, chatting with the neighbors, and feeling like I was finally standing in the sunshine. I thought that the hard times were over, at least for a little while.

But it didn’t work out that way. Six months after we moved here, I got the AS diagnosis, and its implications are all hitting me very hard right now.

I feel so bad for Bob. He didn’t sign up for this ASD stuff. He didn’t sign up for a wife who goes shopping at the co-op for a half hour and then needs to lie down under 30 pounds of weighted blankets for the rest of the afternoon. He didn’t sign up for a wife who is afraid to try going to the movies anymore because the sensory overload of the sound, the visuals, and the people is so difficult to bear.

He says it’s all fine, that he doesn’t think anything is wrong with me, that he loves me, that he’s so happy with me, and that I do so much for him, even though I can’t see it. He says that he did sign up for all of this, for every bit of it, because that’s what marriage is about.

I know it’s true. And I know that if the roles were reversed, I’d feel just as he does.

But, still, it wasn’t supposed to be like this.

So, where do I go from here? Through the fog and the haze, I can see that there are situations that give me some sense of belonging, although with each of them, I feel very limited in what I can do:

1. Living in our neighborhood.

The positives: I like living on our little one-block road with very friendly, kind neighbors who respect one another’s privacy and don’t play loud music. That soothes me. It’s reassuring that I can have some nice conversations, so long as it’s between me and one other person.

What’s not so great: When a neighbor comes over to chat with both Bob and me, and I can’t keep up. Then, I don’t feel soothed. I feel sad. I watch the whole interaction take place, and I can see that the other two people are connecting in some way I can’t grasp, and that I’m out of sync. It feels truly and painfully awful, like I’m in some sort of invisible time capsule that no one can see but me.

2. Going to my volunteer job

The positives: Everyone seems to be very accepting of quirky people, and I’m becoming quirkier with every new day. People genuinely seem to like me there, even though I feel completely “other” all the time.

What’s not so great: Last year, I went there looking for friends, and somewhere down the line, maybe even paid employment. Now, I just go there, do my two-hour shift, try to be friendly and helpful, feel overloaded, come home, lie down under weighted blankets, and hope like hell that my nervous system calms down sometime before the weekend.

3. Connecting with people online

The positives: I love writing this blog, reading people’s comments, getting emails from readers, and responding to them. I also love reading other people’s blogs. I have made my first Aspie friends in the past year, people with whom I correspond by email on a regular basis.

What’s not so great: It all feels so…virtual. Except for a few photos, I don’t know what anyone looks like. And I definitely don’t know what people sound like. Although my visual and auditory systems can get overwhelmed, they also help me feel reassured, especially when it comes to belonging. I’m an artist and a singer. I love visuals and sound. They just have to be the right ones.

So, I’m left having to take a very, very big leap of faith that there are people out there:

a) whom I’ve never met in person,
b) whose names, in some cases, I don’t know,
c) who feel just as I do,
d) who accept me for who I am (whoever that is), and
e) who comprise an online autistic community, to which I belong.

Do I have that right? Is that what everyone else is attempting to do? Help me out here. This requires a huge leap of faith for me. I’m not good at those. (It’s the feeling of weightlessness that comes with the leap. So often, it’s been followed by a crash.)

And of course, as I write this, I’m thinking, “I hope these people don’t think I’m completely nuts. Should I even say all this?”

Yes, I should say all this. After all, it’s real.

I’m not the only one who feels these things—am I?

© 2009 by Rachel Cohen-Rottenberg

12 Comments

12 Responses to “Toward a New Sense of Belonging, Part 4: What’s Next?”

Saja May 21st, 2009 at 2:55 pm

I can relate, Rachel.

Bob sounds so much like my husband, and I feel just the way you do. Like I married him under false pretenses (though I had no idea at the time that I wasn’t an NT, either). Both men are so loving, kind, and understanding it makes me want to weep.

I’m on the climb out of a few weeks of enhanced Aspieness, by which I mean it all just got to be too much and I *couldn’t* fake NT very much at all. I barely left the house, tried to avoid everyone other than my family (and, frankly, tried to avoid them most of the time, too), got totally overwhelmed by every sound, and felt like my head was exploding in chaos at the mere thought of basic things that need to get done (let alone anything needing forethought and planning). Now my NT powers have regenerated (as my online-role-playing-game-playing son would say), and I’m not quivering in bed hoping time will just stop for a couple of days, already. It’s kind of a relief, but I know it’s also because my husband pretty much picked up ALL my slack and gave me tremendous amounts of time alone. You know, I can’t think when other people are around. Is that odd? It’s like my head is filled with sand or buzzing flies or something, until I’m all alone, and then my thoughts can flow.

Anyway, I’ve had these meltdowns so often in the past (especially when my children were babies and toddlers–and the youngest is a toddler now), and thought it was depression, but it’s clearly just needing down time. Because every time I get that down time, it goes away, and I’m good for a while. I need to figure out how to structure life within a three-kid family so I get down time every day.

And I also need to move toward dropping some of my massive cache of NT behaviors, because they ultimately contribute to meltdowns. I need to stop jumping in with both feet (as you said) the minute I start feeling stable and sociable again. But after a lifetime measuring my success as a human being by how well I’ve managed to get other people to see me as “normal,” it’s hard to rein in and take a different path.

Oooh, this is all about me, but I hope at least something here strikes a chord for you. I really like “talking” with you, at any rate.
John Dale Lyons May 21st, 2009 at 2:58 pm

Here’s a virtual hug
Jennifer Gardner May 21st, 2009 at 3:28 pm

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.
Intern in Israel May 21st, 2009 at 4:32 pm

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.
millie May 21st, 2009 at 6:49 pm

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
Kate May 22nd, 2009 at 12:42 am

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
LizzieK8 May 22nd, 2009 at 6:53 am

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.
James May 22nd, 2009 at 9:16 am

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.
Ben May 22nd, 2009 at 9:54 am

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
Rachel May 22nd, 2009 at 11:47 am

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.
John Dale Lyons May 22nd, 2009 at 3:39 pm

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
Craig Liley July 11th, 2009 at 5:18 pm

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.