A wonderful post by Rachael Cohen-Rottenberg on socializing
PaintingDiva
Deinonychus
Joined: 27 Jul 2011
Age: 71
Gender: Female
Posts: 335
Location: Left coast aka Northern California
21 Feb 2012, 10:13 am
This woman writes well and purposefully about the 'social issues' of life and ASD.
A recent post of hers, sure speaks to me. Link to her blog at the end of the post here:
February 19, 2012 Rachel Ableism, Communication, Community, Loneliness
As many of you know, I’m in Santa Cruz for two months to visit my daughter and, as an added bonus, to escape the Vermont winter. Or, should I say, those were the two reasons, in order of importance, that I got on the train in Springfield, Massachusetts on January 21 and ended up in lovely Santa Cruz three days later.
But now I realize that I came out here for a third reason: to take myself out of my accustomed context so that I could see myself, and the world in which I live, more clearly. In other words, this visit has quickly turned into a spiritual retreat of great intensity — one in which I’ve come face to face with myself, with the ways in which I relate to the world, and with the ways in which the world relates to me.
One of the things that has struck me since I’ve been out here has been a sense of deep loneliness. It’s not the loneliness of missing my husband, my friends, my familiar places, or my routine. It’s a much deeper loneliness, one I’ve had all my life. I’ve always felt as though I’ve been walking through the world alone.
Yes, yes, I know how self-pitying that might sound in the ears of some, but believe me, I have no pity for myself on this score, nor do I blame myself for feeling as I do. And yes, yes, I know that the word autism means self alone, and that someone reading this piece might be tempted to say, “You see, she’s talking about what autism is,” as though that is what I mean to say. Believe, me, that is not what I mean to say, at all.
I’m not talking about what autism is. I’m talking about what happens to autistic people in the world.
Autism is not a condition that, in essence, automatically renders one alone and apart. How could it be? One can only be alone and apart when other people don’t give access, don’t make space to allow you to be as you are, don’t provide a place to belong. And I’ll tell you something else: to say that autism automatically renders one isolated is to let everyone else off the hook for their failures to accept, to engage, and to respect us. I’m not saying that some of us don’t like being alone. I’m not saying that some of us don’t prefer it. I’m saying that for a great many of us, it’s not a choice we make, but a socially constructed condition we can’t escape.
I’ve been looking very closely at my interactions with other people. What I’ve noticed, as usual, is that I have all the same desire for interaction as anyone else. I may need a different kind of interaction, but the desire to connect with my fellow human beings is thoroughly intact. The “problem” (as the society in which I live is quick to tell me) is that my hearing, my information processing, and my communication are atypical. I don’t read neurotypical social signals well at all. I can’t hear what people are saying very consistently when there is ambient sound. I have auditory delays that don’t allow me to keep up with conversations when they go too quickly, and it usually takes me time to reflect on what I hear before I can come out with a verbal response. Put me in an environment with a lot of sensory information coming through my largely unfiltered system, and it’s no wonder that I have been known to either falter over my words, or talk a blue streak before the sensory overload hits critical mass and I have to leave.
None of these things will change. They have always been there, and they will always be there. That is in the nature of my disability. This is neither a gift nor a curse, an adversity delivered to bring me greater spiritual awareness nor a tragedy of epic proportions. It simply is. I have long since left behind the idea that I ought to be someone else. I am who I am. What I’ve come to realize, though, is that my auditory delays, my unfiltered sensory processing, and my verbal challenges are the absolute bane of my social existence. And the question I have found myself asking as I’ve cried myself to sleep at night is, “Why the hell should these things render me so isolated?”
Now, most people would answer that question by saying, “Well, don’t you see? You have a communication disorder, a social disability, a failure to connect in the world of normal people. What do you expect?” And what I would like to point out to such people is that, as David Smukler has articulated so insightfully, communication is a two-way street, in which both parties attempt to understand the other. Unless you’re simply attempting to evade responsibility for your part in an interaction, you cannot locate a communication problem in only one person:
Both communication and social interaction, by definition, require more than one person, and difficulties in either area should properly be located between individuals
and not within one individual. (Smukler 17)
I am painfully aware, more than I have ever been, of the level of social exclusion, impatience, and outright hostility sent in the direction of people with disabilities. We autistic people are far from unique in this, and it comes from exactly the same attitude: Disabled people are just too much trouble. They just hold everyone back. Why should we have to slow down for them? Who cares how they feel?
Pardon me, but I care. I care about how everyone feels. So, I will ask the question: How would a social interaction work to make someone like me an equal partner?
First of all, it would take an understanding that there are many ways to communicate, and that one is not better than another. Losing that Why is she being so weird? look when I’ve clearly missed a signal would be an excellent beginning. So I can’t read nonverbals. So what? So I need a little extra time to find the words. Big deal. So sometimes, my words go up over mountains and down through valleys and around in circles before I know that I’ve made myself clear. Get over it. It’s not going to change, and my inability to change should not mean social exclusion.
Second, inclusion would require someone slowing down for me so that I can process what I hear and come up with a proper response. I do not think this is too much to ask — any more than I think it’s too much to ask that an able-bodied person give space to someone attempting to board a bus in a wheelchair, or that a hearing person take a moment to write back and forth with a Deaf person ordering food in a restaurant. The fact that able-bodied people become impatient and even hostile is appalling. Really, people. Where are you all going in such a damned hurry?
Third, inclusion would necessitate an understanding that there is absolutely nothing required in the way of superhuman patience to actually communicate with a person with a disability, and that stopping to listen to someone with atypical communication, far from being a heroic or charitable act, is an act of bringing a fellow human being into human community. Let me put this bluntly: Social inclusion and interaction, when someone desires them, are basic human rights that no disabled person should have to request, and that no able-bodied person with an ounce of ethical understanding should refuse. Treating people like human beings is not some sort of saintly act of altruism restricted to the most holy among us. In fact, according to Tobin Siebers’ brilliant formulation, it is an act that makes us human:
Humanness is defined by the aspiration to be human but in a paradoxical way that includes as part of that aspiration the requirement that one concede to other beings the status of human being in order to be recognized as human oneself. Conceding someone the status of human being, I note, is not so much a matter of giving them permission as just letting them be as human. (Siebers 93)
Fourth, creating social connection would require people to get it through their heads that however uncomfortable, awkward, or annoying it may feel to deal with someone who puts out unexpected nonverbal signals (or none at all), or who speaks in an atypical manner (or not at all), it doesn’t hold a candle to how excruciating it is to go through the world isolated because people just feel too uncomfortable, awkward, or annoyed to deal with you. The discomfort, awkwardness, and annoyance of able-bodied people may only last a minute, or a half hour, or an hour, and then they go back to their regularly scheduled lives. Please imagine how it feels to keep meeting up with a world full of people who turn away, every day, because their discomfort trumps our longing.
And fifth, it is vital that able-bodied people consider how soul-wearying it is to keep trying until one finds those people who simply accept the awkwardness — my awkwardness, their awkwardness, our awkwardness — and make a connection. It is painful to engage in social interactions in which everything is fine until you show how atypical you are, and then the energy shifts, subtly and unmistakeably, from Glad to meet you! to Oh, I thought you were normal. When I see parents wanting to train their children to “pass,” I just want to shout, Passing only goes so far. Then people find out who you really are.
No wonder disabled people end up socially isolated. It hurts the heart to keep going out and trying. And then we end up being told that we’re narcissistic about our difficulties, that we don’t try hard enough, that we just need to be cheerful and act normal and everything will be fine.
Yeah, right.
So what I want to say to all the folks who have not been diagnosed with a social disability: What is keeping you from extending a word, a listen, a desire for connection to us? And how does your failure to use your social skills to bring other human beings into community translate to a social disability located in disabled bodies, rather than in the able-bodied world?
—
Siebers, Tobin. Disability Theory. Ann Arbor: The University of Michigan Press, 2011.
Smukler, David. “Unauthorized Minds: How ‘Theory of Mind’ Theory Misrepresents Autism.” Mental Retardation 43, no. 1 (February 2005): 11-24. doi: 10.1352/0047-6765(2005)43<11:UMHTOM>2.0.CO;2.
© 2012 by Rachel Cohen-Rottenberg
http://www.journeyswithautism.com
ghostar
Velociraptor
Joined: 20 Dec 2011
Age: 44
Gender: Female
Posts: 403
Location: Most likely work. Sigh.
21 Feb 2012, 10:59 am
"No wonder disabled people end up socially isolated. It hurts the heart to keep going out and trying. And then we end up being told that we’re narcissistic about our difficulties, that we don’t try hard enough, that we just need to be cheerful and act normal and everything will be fine. "
PaintingDiva, thank you for posting this article/essay. The above quote hit me hardest. To have one's "best friend" or lover tell one that they are just trying to get attention or that they aren't trying hard enough is especially soul-crushing. 
PaintingDiva
Deinonychus
Joined: 27 Jul 2011
Age: 71
Gender: Female
Posts: 335
Location: Left coast aka Northern California
21 Feb 2012, 1:45 pm
Actually the article made me cry...the author so plaintively explains the situation.
Describes my son to a "T" and I have resonance with it too.
It does not mean she doesn't have a life, or a husband, because she does.
It sounds like she is just a bit frayed and beyond tired of over compensating and wondering why oh why the NT world doesn't try harder on THEIR end.
21 Feb 2012, 3:03 pm
Thank you for the article! It is excellent, and so relatable. I can think of a few people outside WP that would appreciate it that I will have to pass it along to.
I too have a husband and children that I know love me, but I still always have that feeling of "walking through the world alone". I suppose that it is good that I have less desire for contact than she does, but it still hurts, sometimes.
_________________
"Meddle not in the affairs of dragons; for you are crunchy and taste good with ketchup."
22 Feb 2012, 2:55 am
Once again, thank you for sharing this piece with us all. Just to sidetrack... Recently, I told an NT that I realized that most people seem to be navigating through their lives on autopilot mode while I have to think every step out. She replied that maybe Aspies' nerves transmit signals at a slower speed as compared to NTs' nerves. I think that what she said might make sense. What do you think?
"I’ve been looking very closely at my interactions with other people. What I’ve noticed, as usual, is that I have all the same desire for interaction as anyone else. I may need a different kind of interaction, but the desire to connect with my fellow human beings is thoroughly intact. The “problem” (as the society in which I live is quick to tell me) is that my hearing, my information processing, and my communication are atypical. I don’t read neurotypical social signals well at all. I can’t hear what people are saying very consistently when there is ambient sound. I have auditory delays that don’t allow me to keep up with conversations when they go too quickly, and it usually takes me time to reflect on what I hear before I can come out with a verbal response. Put me in an environment with a lot of sensory information coming through my largely unfiltered system, and it’s no wonder that I have been known to either falter over my words, or talk a blue streak before the sensory overload hits critical mass and I have to leave. "
Gosh, this is the story of my life.
23 Feb 2012, 2:36 pm
That whole post just described several of my experiences of the past nine years to a pinpoint. I'll highlight a few such events. I'm sure many of you guys might relate to some of them.
1. I remember one day in my senior year of high school when my partner and I were building a house. She would not even let me do any of the work, and yet called me lazy at the end of the class period as if I chose not do do any of the work.
2. On February 17, 2010, an Aspie girl that I was friends with started to treat me like a creeper because I wouldn't talk to her on the city bus that morning. I was in a very bad mood and didn't feel like talking to anybody that day. This went on for three months, and I found other people, mainly guys, acting rude towards me on purpose while I was riding the bus just because of this.
On a positive note, two of my female friends insisted that I hang out with them while on the bus, the college, and the bus terminal. I did hang out with them. That made me feel better somewhat.
3. A girl from high school told me (indirectly) that I was cold and uncaring because I wouldn't go to her house and hang out with her. My mother's car had just died and major cuts to bus service was the reason I didn't hang out with her. This happened around September 2010.
4. I lost a bunch of friends at the college in January 2010 because I had to arrive a half-hour later due to the frequency of the bus route going by my house being reduced from 30 minutes to 60 minutes. That caused me a lot of chaos and stress, since it meant that I had to find a new daily routine.
Due to these, and many other negative events in my life, I find myself becoming more and more anxious when going out alone in public. I am finding it more difficult to make new friends because of the anxiety. I'm sure a lot of you can relate to this statement.
I agree with the post that many NT's are hostile and impatient towards people with disabilities. This is especially true when it comes to those who are on the autism spectrum, since there is often no visible disability. I've experienced it personally on many occasions.
I've been turned down for almost every single job that I've ever applied for. Only two employers so far have given me a chance, one for a country club, and Quiznos. I couldn't work for the country club because there was no bus service on that side of town and I couldn't work for Quiznos, because there was no bus service on that particular bus route on Sundays. With the social difficulties combined with the negative stigma that us Aspies have to deal with, no wonder why many of us are poor and just barely scraping by, if at all.
Many NT's don't seem to realize that by not allowing any accommodations for our social difficulties and our sensory issues, that they are setting us up to fail in the real world, and not just socially.
pi_woman
Deinonychus
Joined: 15 May 2006
Age: 61
Gender: Female
Posts: 301
Location: In my own little world
23 Feb 2012, 3:12 pm
Feeling rejected and inadequate when NTs shifted from "Glad to meet you" mode to "Oh, I thought you were normal" is what hurt me the most before my diagnosis. It didn't even occur to me that they're acting that way because THEY are only comfortable with one narrow type of social interaction, to the extent that they'll make an excuse to leave so they don't have to be stressed out by me any longer.
Now I anticipate that reaction by trying to get a feel for how mature/sophisticated the person is, and if I'm sensing a red flag, I'll save us both time by deliberately saying something non-NT (but not hurtful). If they react awkwardly, I'll make a joke like "Don't worry, being nerdy isn't contagious" to let them know I'm not upset, but I refuse to pretend to be someone I'm not.
01 Mar 2012, 12:07 pm
After about three hours of searching for something about my feeling of remoteness and distance from others, I decide to read just one more article before going to bed, and here it is, someone who describes it perfectly. 'Walking through life alone'. Thanks.
I don't blame other people for the feeling as this article seems to do -- I think it is something inside myself, it has been there as long as I can remember, I remember feeling it when I was four. A sense of detachment and an aloneness that sometimes feels like a safe place, but other times like an uncrossable vacuum. The only thing that helps is when I have an accepting person by my side in an intimate relationship. I don't have that at the moment, although I do have lots of friends. But it doesn't matter how well I'm getting on with people, that alone feeling is always there.
I wanted to read something that would tell me whether neurotypical people have this detached feeling too, in which case it is probably caused by my early childhood attachment issues and not by neural difference. Or perhaps everyone on earth feels this way but doesn't talk about it. I'm still looking for an answer to that. I found something about the dissociation caused by severe abuse but that seems much more extreme than what I feel.
I am in my mid-forties and describe myself as someone with a number of the characteristics of Aspergers or high-functioning autism, with LOTS of learned workarounds and skills. After a great deal of effort, actually initiating a community event that attracts likeminded people, I have finally reached a stage in my life where I have some real friends, people that I know really care about me and that I can rely on. I have had to learn to really be myself to achieve this -- to be open with them about my attitudes and feelings. They are other people who are 'weird' in various ways and accepting of each others weirdness.
I don't really enjoy the company of the average NT person anyway -- I get bored with them -- so I don't really care whether they make an effort to communicate well or whether or not they like or accept me. However I would say I am now better at communicating and empathising than most NTs, because I have deliberately learnt the skills, and as a result I find there are a lot of people who like me better than I like them, haha!
Some things are never going to be easy, though. So when I make a gaffe or can't recognise someone's face when they're out of context, I tell them not to take it personally, that I am slightly autistic and so this happens all the time. I laugh at myself. I sometimes practice workarounds, especially for remembering names, but I don't worry about it so much now as I used to. People will just have to accept it.
I actually like being this way, I wouldn't want to be 'normal', it doesn't look like fun to me. I think Aspergers or high-functioning autism is an ability, not a disability. There's a sense of clarity. But, yes, it can get very lonely. Which is why I am online at 1 am instead of being, for example, asleep next to someone. LOL. I've been reading the articles about dating and all that. Good to know other people have the same difficulties.
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