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Aug19
Feeling Invisible
14 CommentsI’ve written in the past about feeling invisible when Bob and I run into people who talk to him and ignore me. I know that this experience is not unusual for people on the spectrum, even though I don’t completely comprehend it. I know, for example, that we put out unexpected social signals (of which we’re not consciously aware) and that neuro-typical people find them confusing. I’m also aware that sometimes, because we’re not modulating the conversation with signals that others recognize, we are perceived as being socially absent.
What I can’t comprehend is how people can be so rude. So we put out weird social signals—who cares? We’re still human beings. I don’t get how people can ignore someone who clearly wants to be part of the conversation. On a purely visceral level, it offends me to the core.
Every since I was a kid, I’ve understood the necessity of inclusiveness. Perhaps I perceived my difference early on and saw the potential for being left out. Or maybe I just couldn’t stand the idea of anyone being marginalized. But it’s not just me. I’ve watched my neuro-typical daughter understand the importance of inclusiveness the same way she understands the importance of eating and sleeping. It’s not that she befriends everyone she meets, but unless people are rude or obnoxious, she will find common ground and treat them fairly. It’s not just upbringing. It’s who she is.
Unfortunately, the world is made up of people who don’t seem to get it, so I’m going through another round of feeling invisible. It began when I actually read some of the emails that Bob has gotten about my autism. Bob had told me enough about them to send me into paroxysms of grief over the weekend, but when I actually saw them, I realized that they were even worse than I’d imagined. They nearly sent me through the roof—not simply because people seemed to be working under a whole host of misconceptions, but also because they were questioning our choices and commenting on our relationship.
It was clear that we had to re-draw the sacred circle around our marriage and let people know that they’d crossed a line. So, on Sunday, Bob wrote and emailed a letter to several family members, basically setting limits while explaining how autism really works and how it affects us. He explicitly said that I feel very alone, and he ended the letter with the following statement:
“I appreciate all of your concern for me, for how I’m doing. I really do.
But please know that my part is the easier one: I am not struggling to
make sense of the neurological reality of autism. Rachel has the hard
work here. She’s doing it, and she needs your compassion and support and
empathy. If it’s hard on me, and it is, please imagine how hard it must
be for her!”By the next morning, I’d received a very sensitive and apologetic response from one of Bob’s family members, which was truly amazing. Since then, all the other responses have been directed to Bob. Apparently, my email address has joined me in the land of invisibility. How else am I to explain its absence from the To: line? I’m sure there is a completely rational explanation, but I’m autistic and don’t really understand the mysteries of the universe as others do.
Bob forwarded one of the responses to me, and before he could forward any others, I asked him to stop. I feel unbearably sad when people direct their responses to Bob and talk about me in the third person. It’s the equivalent of standing in the grocery store and having someone direct all of the conversation to Bob when I’m standing right next to him. I’m not sure what part of “she needs your compassion and support and empathy” wasn’t clear to people, but obviously, there’s still a disconnect.
I know that many autistic people are more sensitive than your average person. Slights that another person might not even perceive cut us to the core. It’s hard for me to understand that other people don’t feel things as acutely as I do, and so it’s difficult for me when people don’t respond in the ways I need them to. But I have to step away from these kinds of conversations. Bob and I have had them for years, about so many people. Given the way my soul cries out for understanding and empathy, I’m not sure quite how to protect myself against hoping, every time, that people will just get it, but I’ve got to face facts here. I must detach my energy from people who are well intentioned but essentially blind to how I feel.
Margot Nelles, founder of the Asperger’s Society of Ontario, describes the experience of Asperger’s in the following way:
“It’s like being dropped in the middle of rural China without a guidebook or a language book,
and you go from home to home and feel that somehow you have insulted everyone.”I’ve felt all my life that somehow, despite all my best intentions, I’ve unintentionally insulted people on a regular basis. How else can I explain being left out of so many conversations? Is my difference an affront to people? Is it my honesty? Is it my need to be understood? Or is it simply my sensitivity to all things sensory and emotional that leads people to work around me rather than directly with me? I don’t know, and I suppose, at this point, that I don’t need to know. I just need to look at empirical reality and make some course corrections about where to put my attention, my hope, and my energy.
At moments like this one, my husband says, “You just have to accept the way that people are.” But I can’t accept it. I’ll never accept it, because I know how much better it could be. At the same time, though, in my own life, I have to stop hoping for things to be different. I must stop hoping that maybe this time, if Bob and I say just the right words, with just the right tone, at just the right moment, everything will change. I have to acknowledge the stark reality that as much as I struggle with the acute sensory sensitivities that come with autism, I suffer most from other people’s responses to me, and that I can’t do a thing about it except to place my attention elsewhere and move in a different direction.
© 2009 by Rachel Cohen-Rottenberg
14 Responses to “Feeling Invisible”
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The painful part for me here is the realization, once again, that no matter how hard I try to be clear about what’s going on in my life, most family members only see and hear things in terms of their caring and compassion for me. Now perhaps I understand why it’s been so hard for me to reach out to people when I’m in need — because they’re not able to get the real picture. Is that because of their love for me? That doesn’t make sense. I think the thing that gets in the way is the discomfort in dealing directly with the “other” — the thing (or person, in this case) who we don’t understand and therefore can’t easily relate to. This is usually the case in dealing with anyone with any form of “otherness.” So, rather that reaching out directly to Rachel, the people who know and love me reach out to me — completely missing the point that, much as I appreciate their concern for me, I’m not the one who’s suffering here. I love these people — I really do — and I’ve known most of them for most of either my or their lives. I guess we all should know better about the harm that comes from dealing indirectly with people who have a clear need and desire for directness.
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I wish I had something helpful to say. I’ve also been feeling invisible lately, but in my case it’s been because I hang out with people who have some quite serious problems of their own, and so have difficulty relating to others.
I often meet people with various neurological issues, and it’s helped me learn how to socialise because I can look at their behaviour and say “Mmm, I do that too. But I think I’ll stop now because I can see it makes me feel a bit uncomfortable when people do it to me.”
You sound like a very sensitive soul Rachel and I’m sure you’ve already learnt all the social rules you need to know. But for anyone younger reading this, perhaps someone in their early 20s, I’d recommend trying to meet as neurologically diverse a crowd as possible, because you will all learn from each other.
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“I must stop hoping that maybe this time, if Bob and I say just the right words, with just the right tone, at just the right moment, everything will change. ”
i think you hit the nail on the head with that line. i have found it easier as i get older, to not be so angry with the people who aren’t getting me, or bothering to try. it’s not their job to be my friend, or try to understand me. as hard as it is for me (and you) to have the same attitude, being the ones on the outside, we need to remember that it’s not our job to be palatable or understandable, or digestible to anybody. as well, that also means that when people are having difficulty with you, it’s not because of anything you have done, haven’t done or could do in the future.
it’s not their fault that they can’t or won’t understand, and it’s not your fault for not being able to move heaven and earth to get their understanding. it’s not always comforting, but important to remember that each one of us is exactly who we are, and our worth is not tied to anything other than our being-ness, not our smarts, our beauty, our money, our status, our talent or even our compassion or lack thereof.
it’s almost impossible for me to understand why someone would not want to understand someone else, but as the world makes its demands on my senses and my energy, i begin to see why somebody might not want to spend the time or energy on getting to know me, as wonderful as i am
thanks be to Bob
take care, go for a walk, if you haven’t already. smell summer before it’s gone. -
Not accepting it is, IMO, Einsein’s definition of insanity: Doing the same thing over and over and expecting different results.
Once and while a shining star steps into your life and a wonderful friendship is born.
I know it makes you sad people ignore you, but on the other hand, do you really want to be included in the chit chat about the weather, Aunt Bertha’s hospital stay or who is the best on Dancing with the Stars? It’s a dilemma we live with all the time and I really think people insisting we are part of such a conversation is more painful than being ignored.
Different strokes, though, and I understand that.
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I see this along the same lines as Ben. I believe people tend to work thru channels that are most comfortable for them. You no doubt utilize Bob as a proxy for many things. Others are likely to do so in turn. Operating within your Margot Nelles quote as an analogy, think of Bob as a translator that you have on your journey in China. It should be expected that effective communication will need to utilize his interpretive abilities as much as possible. This of course does not resolve your feeling of being an indirect participant, but it at least is a workable model for communicative progress. Blame my view on my stark pragmatism.
On the larger concept of invisibility, I completely share your experience. When out in public, I often find myself wondering if I’m even physically invisible. I am so tired of being cut off or almost walked over while people carry on their rude behaviors.
It would be too much of generalization to have an opinion about the behavior of people everywhere, so I will only relate what it is like around Atlanta here. This is a very “me” oriented local culture. The overwhelming majority of people are completely self-absorbed and regularly show no regard for others. I often talk about parameters. I feel that since we aspies often fail to notice social behavioral cues, that our ability to adapt is very much dependent on rigidly defined parameters. The problem is that if the parameters by which we operate developed in a social environment that has subsequently changed, we are likely operating with the wrong set of rules. Our expectation is that everyone operates within the same parameters and become anxious and confused when we see others not meeting our expectations. The solution is to alter the standards by which we ourselves operate or those of society at large. The latter being completely impractical, it is obvious that we must change our expectations. This is of course easier said than done. Personally, there recently seems to be a disturbing trend of me having to lower my expectations of society.
The only way that I’ve ever found that insures my direct participation in nearly anything, is to literally sort of butt in. This can be done without being necessarily rude, but a certain degree of assertiveness and self advocacy goes a long way with people. I often find myself having to insight a certain level of defensive caution in others to get them to “face me.” Not everyone reacts to this method favorably, but the ones that do, tend to be the types of people with whom I later wind up being socially comfortable, ie. friends.
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When talking to doctors or to insurance companies, I don’t mind Bob standing in as a proxy for me. In fact, I prefer it. However, in this case, the situation called for something much different.
I have had direct conversations with everyone in Bob’s immediate family, and with several people in the extended family, most of which have been quite positive. Bob requested that people acknowledge me directly, and the one person who did is someone I’ve never even met, emailed, or spoken to. If anyone were going to use Bob as a proxy, I would have assumed it would be her. Instead, she defied expectations.
When the day is done, I don’t think that Bob has any more insight into why it came out this way than I do. Everything he wrote in his comments above pretty much mirrors what I was thinking.
However, you may consider my expectations adjusted.
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I totally agree with you. The way people respond to things has me constantly scratching my head and feeling like an alien. I am not in any way condoning their responses. I find myself more and more simply watching from the sidelines and trying to make sense of behaviors I see. This is the main reason for my own increasing isolation. I simply do not like the way people go about things. Their actions too often seem to be unjust and unthoughtful. My only choices seem to be complete withdraw, falling into the same insincere patterns, or carving my own new reality as best that I can.
I also often speculate about the role of modern social networking. It seems that many people favor social interaction via some form of proxy. Facebook and MySpace are huge deals in many people’s lives. Look at the prevalence of blogs. And I am constantly confused by the preference of text messaging over talking on the phone. I mean, here is a person holding a phone in a conversation with another person holding a phone, but neither party is actually talking. So many people tend to favor the inefficient half-duplex communication of texting over quick and efficient vocal communication. Could it be that society has changed such that people only feel socially confident with some degree of separation? Maybe society itself has gone somewhat autistic.
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Agreed…. So agreed…Don’t know what to do about it.
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I totally feel for you, Rachael. I get the impression that when you feel strong you’re a fairly extroverted and vivacious personality. Those e-mails sound like pure murder.
“Our expectation is that everyone operates within the same parameters and become anxious and confused when we see others not meeting our expectations. The solution is to alter the standards by which we ourselves operate or those of society at large. The latter being completely impractical, it is obvious that we must change our expectations. This is of course easier said than done.”
Autistic or not, I’d say the culture thing holds unless you’re really foreign looking / sounding. Being a westerner, I found my social skills (perfectly adequate where I was raised) not just inadequate but “woefully rude” when visiting parts of the South. Yet, both times I lived in the UK these same behaviors were considered quaint even if a local would be looked down upon for doing the same thing.
I guess I’m lucky to have found a community of rather odd people who live by their own retrograde rules and can accept that I’m just Differently Weird.
But even then, I get that invisible treatment all the time from folks I’d reasonably call friends. Being pretty introverted I’ve just learned to work it to my advantage… if Sweetie is being engaged in conversation I can more closely pay attention to the details he’s sure to miss. People will reveal a whole lot about themselves when they forget you’re standing there! (Beyond being a rude SOB.) -
Aside from those people who are deliberately hostile, it seems to me many, many people are anxious and uncomfortable themselves. Just because they are NT doesn’t mean they are self-confident. A lot of NT’s learn early in life how to adapt and conform to such a large extent, that when they somehow pick up that you either don’t quite seem “the same”, or maybe you are just quiet, or that you are anxious or uncomfortable, this may threaten them to their very core. Don’t overestimate their capacity of self-confidence or self-esteem or self-reflection. Their ignoring you may speak to their own anxiety about what to “do” or “say”.
I was thinking of how easy it would be to substitute your story with the story of a African-American. Suddenly, people get quiet. It is not because there is anything wrong with the black person. That person could be a true delight. But many people are caught up in their own fears and discomfort.
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Hi Rachel,
I know that it’s painful being invisible and it’s really, really awful when people talk behind your back.
I’ve deleted the rest of this comment about six times because I really can’t see a way forward. The bottom line is that people don’t change. Not ever. Sure, they can change their outward behaviour but I don’t think they change inside.
You know WHO you are and you shouldn’t try to change to affect others. Just be yourself and those who like you will like you for who you are. As for the others… I doubt that you’re missing much really.
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I completely understand what you mean about feeling like the invisible half. I live in a condo building full of…well, I’ll just describe my neighbors as spoiled kids and leave it at that. When they see me and my husband, I will say hi and they’ll ignore me as if I never said anything. But they’ll fawn over my husband! It makes things worse that I’m a minority and he’s not, so I can never tell if it’s because I’m an aspie or a minority.
It hurts so much to see these people not even giving you the time of day and then being SO NICE to someone else. You know what though? At some point I realized that these are not people whose attention I’d want in the end. The people who are truly worth it value you for who you are and don’t need to hear the word autism to start to pay attention to you.
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John Dale Lyons August 23rd, 2009 at 11:20 am
This entry truly resonates for me.
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Taylor Selseth October 27th, 2009 at 8:51 am
The “being dropped in China” analogy is brilliant.
Often I feel like an anthropologist trying to learn the ways of another culture. I’ve heard that many Aspies do better when they move or visit another country because their social faux pas are excused as just not knowing the little details of local cultural norms.
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