I know I’ve written lots of posts with all kinds of ingenious solutions to the various sensory, emotional, social, spiritual, and logistical challenges of my autistic life. And yes, I’m a very creative person when it comes to thinking this stuff up, and I always live in hope that this time (as opposed to the innumerable other times), my wonderfully ingenious and creative solution will take care of whatever the problem du jour happens to be.
Well, my friends, I’m terribly sorry to have to inform you, but after 51 years of alternating between innocent hopefulness and complete desperation, it’s time to get off the wheel. I am who I am, and my life is my life. Some things will never change. Ready for a list? Of course you are!
1. I am invisible to the average person.
Yes, it’s true. I am just under 5’1″. I weigh almost 110 pounds. I have a head. I have a torso. I have two arms, two legs, ten fingers, and ten toes. I have mass, weight, and occasionally, momentum. I am a carbon-based life form. And yet, most people cannot see me, even when I am standing right in front of them.
Don’t ask me to explain it. I have lots of creative ideas for why it happens—I put out weird social signals, blah blah blah—but those ideas just don’t cut it when you consider the fact that I am actually an incarnate being.
A case in point: Last week, I needed to get a ride to a 6:00 pm appointment. Because Bob was not going to be home, I called a friend a few days before and asked whether he could give me a lift. He was so happy I’d asked! I was so happy I’d asked! He said, “Sure! I’ve been wondering what I could do to help.” So, we planned for him to pick me up at 5:30 on Monday evening.
The appointed time came, and I sat on the porch to wait. It was 5:30. Then, it was 5:35. Then, it was 5:40. Uh oh. Had he forgotten?
I called. He picked up. He said, “Oh, my God! I forgot. I remembered this morning. Then, I forgot!”
To his credit, he got right in the car and came over. He also apologized profusely, and because he is a very nice person, I said lots of things to help him feel better, like “Hey, that’s okay, I have to practically tack a list to my forehead to remember anything!” But inside me, in my heart that broke one more time, I had that old familiar feeling of being invisible. After all, my friend had made lots of arrangements to see my husband for dinner, and he’d never forgotten any of them. This arrangement was the only one we’d ever made, just him and me, and he forgot.
Again, I have no explanation. I appear to phase in and out of people’s memories in the same way that I phase in and out of their fields of vision. It’s one of the great mysteries of creation. Why I’m not included in the Guinness Book of World Records or Ripley’s Believe It or Not! is beyond my comprehension.
2. Most people think I’m strange.
I know, I know. It seems impossible, but it’s true. Inside, I feel pretty goddamned normal, and even a little boring, but most of the world considers me an odd, autistic duck.
Quack.
3. I cannot connect with most people.
I try. I do. Like crazy. Why else do you hear all of those words spilling out of my mouth? Yeah, I know, they don’t help me connect. They tend to make people smile and back away slowly.
And yeah, I know, I could shut the hell up, but shutting the hell up doesn’t help either. I shut the hell up, and then I get to hear about everyone else’s life without getting a word in edgewise. It’s exhausting. And it pisses me off no end.
Now, bear in mind that I’ve read about the path of moderation. I’ve spent a lot of time trying to find the middle ground. I’ve watched so-called normal people operate, and I’ve tried to emulate them. My husband is particularly good on the moderation thing, and for many years, I tried to mimic his rhythm, his words, his affect. Guess what? Are you sitting down?
It didn’t work.
4. People tell me what a marvelous, spiritually evolved, loving, peaceful, giving, friendly, hard-working, and intelligent person I am, but no one asks me to lunch.
How is that possible? Does my spiritual radiance overpower them? I have no idea.
5. People ask my husband what they can do to help, but they don’t ask me.
Isn’t that odd? Oh, yeah, right. I’m invisible. You can’t look into my eyes and ask what you can do for me—I mean, not without looking like you’ve lost it.
Of course, you really shouldn’t be asking anyone what you can do to help an invisible person anyway—unless you are committed to the idea of making the person visible. But then again, if you were committed to that idea, you wouldn’t ask my husband how to help. You’d just pick up the phone and call me, or send me an email, or walk over and engage me in a conversation.
6. People tell me that they want to get together, but oftentimes, when I suggest a time, they don’t respond, and I can’t understand why.
Because he is a wonderful person and likes to think the best of people, my husband tries to explain these things. The problem is that every explanation comes down to “That’s just how it is.”
Yeah, I know that’s how it is. That’s why I brought it up in the first place.
7. When I write blog posts and don’t get much of a response, I feel sad and disappointed, and then I kick myself in the ass for being such a baby.
Come on, you other bloggers. Admit it. You KNOW you feel that way. Sometimes.
8. I try really, really hard to accept having only online friends, but I still crave a 3-D friend, big time.
9. I am afraid to reach out to people, because I’ve gotten disappointed so many times, but then I get pissed off when no one calls.
Yeah, okay, I admit it. I want someone to look at me and say, “Oh, my. That person is in distress. I must help. I will ask her how to help. And then, I will actually do at least one thing she suggests.”
You may say I’m a dreamer, but I’m not the only one…
10. I actually have moments in which I believe that if I just explain all of these things to your average human being, he or she will understand.
…I hope someday you will join us, and the world will live as one.
I’d like to accept this state of affairs. I really, really would. I’ve had enough great ideas blow up in my face that my body and soul feel like they’re trying desperately to wave a white flag and surrender. They want to negotiate a truce. They’ll take whatever terms I give them, so long as I stop coming up with Great Ideas That Will Solve Everything. They’re tired of the disappointment. They’re tired of watching my autistic mind spin in circles, trying desperately to find a way out of being an autistic mind.
And I’d really like a truce. I would. I just haven’t written enough hopeful letters to people who can’t understand, or cried enough bitter tears over how lonely I feel.
But I’m getting there. I can’t stay on the wheel forever.
© 2009 by Rachel Cohen-Rottenberg
Rachel,
ok I just read this and couldn’t stand the idea that you will visit back here and see no comment instead of a number. You are not invisible see I saw ya just now. It’s funny I was thinking about you yesterday and what came to mind was that you are good enough and “ya are what ya are” and this post seemed to resonate a bit of that knowledge. I think people have the same fears as you just packaged differently, and so interpretations go a miss. Maybe the trick is not to interpret but to trust what is…is actually what is.
Just some musings from a friend
hugs Suebeedee
I’m a compulsive blog reader and not a great communicator, so I tend to read many and not say hi, but I can sure relate to feeling like I’m blogging into the abyss and why bother ?
I can relate to most of what you say but loled your comment about people flooding you with compliments and then not inviting you any where . Lately, that has not been an issue because I find myself less lonely alone then with humans and am pretty much a “shut-in” , but there was a time before my DX, when this truly confused me and even hurt a little
I’m not always invisible….when I was in my 20′s and had a purple mohawk, I would garner a lot of attention from store clerks who must have thought I was going to shop lift and if I am in great need for rescuing, my family will talk to me but that is about it….I am only visible as a danger or a kitten stuck in a tree . They don’t even answer my emails unless I say HELP !
Really good post.
and ….
I get it completely!
sux donut?
and I like the “quack”
Hi Rachel,
You’re certainly not invisible to your online friends. We take in your thoughts and if I don’t comment immediately, it’s only because I’m mulling them over in my head. Sometimes I get too busy and don’t make it back to comment but that doesn’t lessen the impact. I’m still thinking about it.
I usually save your posts for last in my RSS reader (which prompts me with hundreds of feeds everyday). Yours are last because I want to spend time thinking about them – rather than feeling like I have to rush off to read the next post.
On busy days, I can’t get near your posts.
You’re never blogging to the abyss.
I will admit to liking the fact that I get comments on my blog. They make my day. I don’t expect them though. Some posts get none. I don’t despair though, it just means that people don’t have a lot to say. Sometimes I get comments on posts that are years old. That’s good too. It makes me realise that my thoughts are still having an impact
You will find that too.
You’re always trying to find ingenious ways around the problems. I really respect that. I’m amazed that you try so hard. I’m always telling people to let go and to accept who they are. It’s good advice but at the same time, just because you’ve accepted yourself, doesn’t mean you should stop shouting to the world.
I admire the fact that you never give up.
Hey Rachel,
Ah. Invisibility. I understand exactly how you feel. Exactly.
It really is the oddest of feelings. People don’t talk about you like you aren’t there (so, it could be worse) but it really is like you aren’t there when around other people so much of the time – almost like people have forgotten that you are there standing beside them.
Like you, I’ve mulled over this one quite a bit and haven’t reached any real understanding of why it happens. It’s just plain odd, and very disheartening.
I’ll hold my hand up right now and say that I admit to number seven on your list. I often play a little game in my head. When I post an article, I look at the subject and content and try and work out whether it will be the sort of article that generates lots of comments, or one that generates none. Sometimes I get it right, but surprisingly often, an article I thought would generate loads of comments gets none. And yes, it shouldn’t hurt, but it does.
Part of my Special Interest in my Asperger’s is an attempt to assimilate all there is to know about it. There is a reason for this – I want to tell people that matter all about it, so they can understand. They won’t of course. Not even my wife really understands, and she really tries. Despite of all this, I still can’t let go of number ten on your list.
You are far from alone in feeling the way you do about these things. As I’m sure I’ve mentioned to you before – either here or on my blog or maybe even by email – I miss having real 3D friends terribly. I’m hopeless at making them, and on the rare occasions I do, I’m even worse at keeping them. The online community of friends is great, but something in my head sees non-autistic people having “real” friendships, and of course not having that makes me feel as though I’m a poor facsimile of a human being.
I’m not, though, and neither are you. We just work differently to non-autistic people. And we can have real good 3D friendships – you have a husband, and I have a wife. It can work.
I just did a post on my blog about invisibility. The NTs that responded tried to give all kinds of logical reasons for it. “It’s not you. That person was rude.” and so on. Of course she wasn’t rude, and of course it WAS me.
I get it totally.
Hey, for what it’s worth, I started taking a mild anti-depressant/mood enhancer/anti-anxiety and wow, has it made a difference. I think perhaps, while the input is still there, the amount of anxiety it generates is diminished. I don’t feel like it’s been hidden or pushed down, it just doesn’t bother me as much. It might be worth a try. I know, I went through the purist thing of “This is who I am and I don’t need chemicals to change me.” It’s not changing me, it’s changing how the external stuff affects me. Think about it.
BTW, I have you on my blog roll and read every post. Remember that it’s about your own writing and not other people commenting on it. I go weeks without comments on my blog, but it’s not written for others, it’s written for me.
Very interesting and touching essay. I wonder though, if you realize that so called “normal” people have many of the same thoughts and feelings. There may be a matter of degree here, but seriously those few true friends I feel safe enough to voice these sorts of feelings to all say they’ve had them too.
And Lizzie, whether you believe it or not, it isn’t you, at least not entirely, and she *was* rude, intentionally or unintentionally. I’ve been shut out like that, and I am not autistic. And not just once, either. People tend to shy away from the “different” of any sort, not necessarily because it’s repellent to them but they just don’t know how to relate to it. The differences can be marked, like skin color, or language, or lifestyle, or they can be tiny; just the way one dresses or wears their hair or being overweight, or underweight, for that matter. It makes them uncomfortable, and therefore they tend to ignore it. Douglas Adams in his “Hitchhiker’s Guide to the Galaxy” series called it the “Somebody Else’s Problem” effect.
I’m not trying to minimize your feelings or say you have no right to feel that way, I’m just trying to show that it’s part of the human condition, and we all feel it to some degree.
No one is arguing that our experiences are not part of the human condition, given that we are human and all. However, to say that everyone goes through these things “to some degree” minimizes the intensity and difficulty of our experiences. It ignores:
1) how acutely we experience the sensory and emotional world
2) how difficult it is for us to make friends in a culture that doesn’t understand us, makes no room for us, and stereotypes us as tragically broken
3) how chronically we experience invisibility and isolation
4) how our acute sensory sensitivities often make going into the world an aversive and painful experience
5) how most people have no idea how much work it takes us just to get through a day
6) how difficult it is to just go out into the world, only to feel alone wherever we go
7) how we can’t just hide who we are and pretend to be normal without compromising our physical and mental health
I could go on for several pages, but I’ll stop there.
Hi Rachel, have you heard of Michelle Garcia Winner? I just went to a conference of hers (Social Thinking) and it was fascinating, you might like her work. She helps children, young adults, older adults on the spectrum. She’s helped a couple of people through email, including one successful businessman in his 40′s with AS who could not get beyond a first date. Her website is here, if you are interested: http://www.socialthinking.com/
You know, at this point in my life, I don’t need a social skills workshop. I can emulate an NT just fine (though in order to be true to myself and stay physically healthy, I don’t do it unless I absolutely have to). What I’d really like to see is neuro-typical people going to workshops that will help them understand autistic people, relate to us according to our own neurological paradigm, and respect our form of social thinking. We *do* have our own form of social thinking. It just isn’t neuro-typical social thinking.
In general, I tend to feel that majority people in any situation need to realize how little they understand about minority people, rather than trying to get minority people to assimilate and become mainstream. Those of us in minority populations have gone through a lifetime of figuring out and imitating the ways that people navigate the larger culture. It’s time for a little social reciprocity.
Hi Rachel!
I found your blog a couple of months ago and have read all your older posts as well as checking your blog almost daily! I might not comment much, but your thoughts have given me a much better understanding how the world feels from an autistic person’s point of view. My son is on the waiting list for getting a diagnosis. Whatever it is, I can see enough of Asperger’s in him to read blogs like yours to remind myself about his way of experiencing things.I am a NT and so is my husband, although we agree that he has many aspie traits. Even if the books by “experts” can be good in order to understand some aspects of my son’s world, they can never replace the value of blogs like yours. And the most important thing I have taken away from your blog is actually your point 7 on the list above. i am determined to give my son tools to cope in NT world, but also make sure that he understands that he is perfect just as he is and he does not have to “act” to get approval.
Unfortunately I live far far away from you, otherwise I would love to invite you for a lunch in a quiet place!
Hi, I just want to say I’ve been checking/reading your blog every day for several months (I also went back and read through all your old posts when I first found it) and I love it. I never comment though because my anxiety shoots up and I can’t or I decide that what I have to say is pointless or won’t add anything to the discussion. So it’s not that what you’re saying isn’t interesting or doesn’t make me think, I’m just afraid to comment with what I think. I don’t have a diagnosis of AS (my therapist and I have talked a bit about SPD though) but I relate to almost everything you write here.
“What I’d really like to see is neuro-typical people going to workshops that will help them understand autistic people, relate to us according to our own neurological paradigm, and respect our form of social thinking. We *do* have our own form of social thinking. It just isn’t neuro-typical social thinking.”
I am a NT. Last April I went to a panel at my college about autism, and then another on AS. I learned a lot from going to these. I wish there were more opportunities for me and other people to go more events like this. Hopefully my Autism Awarness club that I am in in my school will set up some events. My boyfriend has AS, and I really want to learn as much I can that will help me understand how he thinks about things.
Yes, I would teach you to knit socks and we could remember the good, old days when we were young, full of energy and reserves and could deal with all this stuff.
Sarah, that’s AWESOME.
i’ve always been a lot like Denise Junk, above. i used bright hair colours, comic gestures, and natural eccentricity to elicit a response. i always felt ephemeral and very lonely. people on the interwebs have provided some support and comfort. but i also crave real life friends.
Hi Racheal,
I was reding your post and it made me cry as it described me exactly, not sure what that means? I’m reading up on aspergers because i do believe my daughter is suffering from it I’m gathering as much info as I can before we go back to the clinic again soon, She has already been diagnosed with ADHD but it seems that a small branch of her probelm. Thanks for your posts I’ll try to get back here soon.
Regards,
Louise
Hi Louise,
Welcome! So glad you found us. Keep reading and feel free to ask any questions you may have.
Great post! I am more out of the closet now about being autistic/Aspergian.
This is a fascinating post for me. I have tried to understand it myself and I have interesting field work evidence to share. In my neighbourhood (in my small town), there are a few older people who I take for groceries, and run errands for. One of them has the beginnings of Alzheimers. Sometimes she tells me I’m a dear friend. But sometime she calls me a “good Samaritan.” In other words, without knowing why herself, she sometimes thinks of me as someone she knows and sometimes thinks of me as a stranger who’s kind. In those moments she does not change how she treats me nor has she forgotten my name, but it feels like having my cover busted. I have noticed myself that when I’m having a day where I’m just not comfortable in my disguise (acting neurotypical), she is able to spot it somehow. I have concluded that my body language on those days (when I wish I could just go hide under my bed) says volumes, even when I try my hardest to overcome it. My oldest daughter, who is Aspie, bought herself a book on body language to try to overcome this phenomenon. That helped some. But right now her special interest is dance, and she takes salsa and stays after the lesson to do hours of non-verbal socializing (dance). She says that she finds it very challenging and therapeutic, but that she can’t dance well when she’s upset. It’s also very hard to dance with boys who she is very attracted to. But her dancing is coming along well, and she considers this a proficiency that will at some point become so natural that she will be able to hide somewhat her occasional discomfort at some environmental distraction. That she is so determined inspires me. It breaks my heart to think that sometimes she feels alone like us. I wish one thing for her, that she never give up hope. One of the things that keeps me going is knowing that she will be watching my example. I don’t know if your mother is still alive, Rachel. But if I were your mother, I would want you to keep hoping and trying no matter what. Somedays it will feel impossible, but on those days there will always be tomorrow to start over in. On the days when you just can’t do it, don’t beat yourself up about it.
“You know, at this point in my life, I don’t need a social skills workshop. I can emulate an NT just fine (though in order to be true to myself and stay physically healthy, I don’t do it unless I absolutely have to). What I’d really like to see is neuro-typical people going to workshops that will help them understand autistic people, relate to us according to our own neurological paradigm, and respect our form of social thinking. We *do* have our own form of social thinking. It just isn’t neuro-typical social thinking.”
THANK YOU.
Heh. Just found your blog, and am so happy to make your acquaintance. I, too, am 51 and stumbled thru the bulk of my life before discovering my AS ten years ago. Raising a slightly AS son as a single mother, I wasn’t about to go public until he was in college. Now, more than ever, I need to be a stronger advocate for him, for you, for me, for all of us, and am enthused to do so. I know some will think I am cowardly for not having come forward more 10, 8, 6 years ago, but believe me I tried and only got shot down. Thankfully, these days there are finally a few adult AS groups in my area, but I’m thinking of creating one of my own.
Hi NBinghi,
So glad to see you here, and welcome!
I don’t think anyone here will think you’re cowardly for not having come out more forcefully in the past. It’s a process with which we all struggle, and we’re all doing the best we can. I do my best to make sure that this blog is a positive, safe space in which to share our experiences.
Nice post. i know how you feel about being invisible. On more than one occasion, my husband had been supposed to meet me someplace and kept driving around the block because he can’t see me standing on the corner. I’m nearly 5’5″.
Hi Erica, and welcome to AJ!
I suppose it doesn’t matter how tall anyone is, does it? When I was in my 20s, I had a boyfriend who was 6′ 2″, and I once lost him in a crowd because I was looking for someone at my eye level. When I finally saw him, he’d been standing in front of me for about five minutes! He thought it was really funny, but I was confused as to why I hadn’t looked up. It was probably some deficit with my spatial skills, or maybe I was just overwhelmed by the crowd.
Hi there, while i’m not 5’1 but 5’10 I do know what it is like to suffer from invisibility.
I also have an autism diagnosis and can see so much of myself in the above, I crave real life friendships yet, yet when I try to create them I cannot sustain them. Even though I live with my partner of 5 years I still crave friendships I do not have.
Thanks for writing this post it made me feel good about myself.
- Samantha
Thank you for this well-written and illuminating post. I am not autistic, but it really helps me to understand what it’s like. Over the years I have grown closer to my nephew and I have learned new ways of connecting with him. At first we were both afraid of each other but we now get on really well. He has taught me so much.
I think many people are afraid of anyone who they see as being “different” and they are terrified of change, and of learning something new, i.e. that the non-autistic view of life, that they are used to, is not the only view. The more autistic people we have as friends, the richer all our lives will be.
If it’s any reassurance, this feeling of social rejection is also experienced by many non-a/a people, my family for instance will only respond to a desperate “help” email or message otherwise they’re just too busy obsessing with their own selves. Even when they DO respond, they’re not much help. And I never get invited to lunch, I think it’s because I live in the wrong area and I like to do my own thing.
I get what you’re saying though, even though you’d probably be bored having lunch with those people, it would be nice to be invited.
cheers and keep up the great writing,
deb
Hi Deb, and welcome to AJ! What you say is true: I might not end up wanting to have more than one lunch date with someone, but it’s the being asked that would make all the difference.
I thought of another reason people may honestly say “yeah, let’s get together” & then fail to follow through. It came to me when I was thinking about having to shuffle people with whom I correspond, rotating where I place my attention from person to person.
Noticed that I have lists of tasks, social & non, and the highest priority gets done while whatever is at the bottom often remains undone. All the tasks-or contact with individual people-matter to me, but what happens is that some items trump other ones merely by (inadvertent yet necessary) elimination. In economic terms, “opportunity costs”: if I do this, then I won’t be able to do that.
As in, I plan to reply to all these people, but I only have so much energy/attention-”juice” (vernacular for my resources of whichever sort). As a result, some errands-or people-get neglected. Not because I don’t want to attend to them, but because I used up my “juice” already, on more pressing needs.
For instance, when I’m hanging out with someone, I’d genuinely agree to another meeting in future. What distinguishes that interaction from the rest of my life is that while spending time with an individual, there’s no other competition for my attention/energy-so it seems reasonable & realistic of me to say “yes, let’s do this again”.
Once the isolated interaction with that one person is over, I’m thrust back into the teeming sea of multiple people/things vying for me to take action (write, call, visit, etc.) upon them. That can displace the slot I’d expected to have free/open for another occasion with the previous person (or task). The “yes” response of the present is true-right up until it collides with the myriad other “yeses” in one’s life, and then something ends up “falling by the wayside”.
So, it’s not an intentional slight nor an aware deception-it’s that I can’t predict how a single commitment will interact with (and which will take precedence over) the multitude of commitments I’ve made in the rest of my life. In good faith, I’ll go along with-or suggest-a future meeting with someone, but I can’t forecast whether I’ll be willing/able to do so, “for real”.
Also, I often am unsure of how an interaction made me feel until quite awhile after it’s ended-because I’m so nervous & overwhelmed in the present moment while with the person-so I only know what I think about it much later. When in the present moment with someone, I’m focused on that-to the exclusion of most other people/things, and my overall sense of myself isn’t available to me until I’m out of that situation-with plenty of time & space to figure out how all these phenomena/stimuli “rate” in comparison to all the possibilities on my plate (choice to consider).
I’ll anticipate having more “juice” than I end up having later-suppose it’s a universal human problem, of one’s “reach exceeding one’s grasp”: not realizing my limitations, because I want to please others & because I want to be able to do more than I can.
Belfast, your description of your reaction in the moment versus your reaction later on describes my process perfectly, and I can definitely see the way it operates in other people. I have to try to remember that when people say “Let’s get together again,” it’s an intention, not a promise. Sometimes, the intention is so important to the person that getting together stays very close to the top of their priority list; at other times, it just gets lost in the maelstrom. For me, the key is to find friends for whom getting together is at the same level on both our priority lists.
Rachel, I wonder if your rural location may be part of the problem. I grew up in a rural small town and had that same experience of invisibility. When I moved to a good-sized city with several universities it has been much easier to find other “eccentric” people that were willing to accept me.