Asperger's and aloneness
For those of you who saw this post on my Psychology Today blog . . . there is a new story there today. For those who did not see it, I'll repost it here:
For much of my life, I've carried a burden of sadness. It started when I was three or four, with my failures to make friends with the kids around me. At that age, I was a monkey face and a retard. As I got older, the name calling faded away, to be replaced by something else. I became the kid no one chose, when choices were made. Other kids were picked for the baseball time, the debate team, the glee club, or even the journalism club. I watched it all from the sidelines, a member of nothing; an observer of it all.
All kids suffer social setbacks, but for those of us with neurological differences like Asperger's, social failure often proves to be the norm. Through it all, I paid close attention in an effort to unravel the cause of my social failure. I learned to look aloof, and set myself apart, and I made myself popular for brief moments with my practical jokes. I learned enough social skills to get along, though I never really understood other people. In that way, I made it through childhood.
School was an ugly place for me. It was an environment where my failures and disabilities were obvious, and my talents were rendered invisible or worthless. I couldn't wait to leave, and I did so at the first possible opportunity. Some of us are lucky enough to find gifts among our various traits, and as we get older, those gifts can lead to some degree of academic or commercial success. That's what happened to me, as I achieved success in the music industry and later in the business world.
Social acceptance often follows success at work. It did for me, and I found myself possessed of friends as an adult. I've observed the same thing in other Aspergians. To some extent, success breeds success. My first friends gave me confidence and allowed me to improve my social skills. That led to more friends and indeed I'm actually fairly popular today and until recently, I'd have said I was fairly successful too.
When times are good, I can derive security from my work, and enjoyment from my friends. There have been moments when life seemed pretty good. But for someone like me it's all an illusion, as the economic events of recent months brought home in a most disagreeable way.
I realize that what positive self-image I possess is founded on the things I've done. I am, to a large degree, my work and my accomplishments. My self-image certainly is not founded on who or what I am, because the worthlessness of that was made abundantly clear to me from the very beginning. Intellectually, I suspect that worthlessness is false, but I've never been able to shake the feelings. I can't really be sure. I read about positive self image, and how such a thing is desirable, but it's always eluded me.
People are full of well-meaning but useless advice. They say, You must learn to love yourself, and Happiness comes from within. How does that happen? I wonder. How does a retard who's destined for prison or a career pumping gas learn to love himself? I've heard that advice thousands of times, and the answer still remains a mystery.
Here's another bit of trite advice I've heard: You are a human being, not a human doing. You are more than what you do at work. I have a very hard time with advice like that. It's the doing where I've been successful in life. The being part places me back on the playground, by myself, at three years of age. I don't want to be there.
I've thought quite a lot about the reasons for this, and I think in my case they are probably founded in neurology. Thanks to my Asperger's, I have a remarkable insight into machines. I can see what I do with machines, and I know it's real and it works and it has value. The machines may not thank me, but I know I've made them last longer and run smoother. I've made them, in a sense, happier and healthier, and it's something I can feel good about. I feel a sense of accomplishment from my work with machines.
But I also know I am part of the community of humans, and therein lies the problem. I cannot see into people like I see into machines; like a neurotypical person. I cannot sense another person's joy or acceptance. Instead, I must deduce those feelings from careful observation. Most of my opportunities to deduce such feelings with respect to me are in the context of my work. Unfortunately, other people's responses to what I do are driven by more than just me. They are driven by a person's own emotional state, their ability to afford my work, and their own self image. All those things are unknowable to me.
Yet I want to know them. I want to be part of human society.
All I see is this: as the economy collapses, machines are neglected and many humans fade away or turn ugly. I'm fairly blind to individual expressions of emotion, but I now sense new feelings of unease, fear, and worry in the world around me. Today's humans make choices that are bad for machines against my best advice. They become critical. The acceptance that was observable six months ago vanishes. At the same time, my own economic security evaporates, and I find myself terrified and anxious in response.
What do I do about it? I cannot derive comfort from other people in the way neurotypicals can, because I can't read their emotions or share my own. That's not totally true - I can share them in writing, here, but I can't exchange them in the ebb and flow of actual personal interaction. Some people say, take antidepressants, but medication does not change the issues for me. Rendering me senseless won't bring me acceptance and it surely won't bring financial security.
It's times like this that I realize how truly alone some of us really are. I see my friends support each other, and as best I can tell, it works. But it doesn't work for me, because Asperger's prevents me from receiving or exchanging the messages of support that keep the others going. It seems unfair at times, because people tell me that my calm and logical demeanor is comforting to them, yet there's no comfort for me. Suspecting that people like and support me is not the same as feeling it, when times are bad. I wish it were, and I hope it all works out ok.
For much of my life, I've carried a burden of sadness. It started when I was three or four, with my failures to make friends with the kids around me. At that age, I was a monkey face and a retard. As I got older, the name calling faded away, to be replaced by something else. I became the kid no one chose, when choices were made. Other kids were picked for the baseball time, the debate team, the glee club, or even the journalism club. I watched it all from the sidelines, a member of nothing; an observer of it all.
All kids suffer social setbacks, but for those of us with neurological differences like Asperger's, social failure often proves to be the norm. Through it all, I paid close attention in an effort to unravel the cause of my social failure. I learned to look aloof, and set myself apart, and I made myself popular for brief moments with my practical jokes. I learned enough social skills to get along, though I never really understood other people. In that way, I made it through childhood.
School was an ugly place for me. It was an environment where my failures and disabilities were obvious, and my talents were rendered invisible or worthless. I couldn't wait to leave, and I did so at the first possible opportunity. Some of us are lucky enough to find gifts among our various traits, and as we get older, those gifts can lead to some degree of academic or commercial success. That's what happened to me, as I achieved success in the music industry and later in the business world.
Social acceptance often follows success at work. It did for me, and I found myself possessed of friends as an adult. I've observed the same thing in other Aspergians. To some extent, success breeds success. My first friends gave me confidence and allowed me to improve my social skills. That led to more friends and indeed I'm actually fairly popular today and until recently, I'd have said I was fairly successful too.
When times are good, I can derive security from my work, and enjoyment from my friends. There have been moments when life seemed pretty good. But for someone like me it's all an illusion, as the economic events of recent months brought home in a most disagreeable way.
I realize that what positive self-image I possess is founded on the things I've done. I am, to a large degree, my work and my accomplishments. My self-image certainly is not founded on who or what I am, because the worthlessness of that was made abundantly clear to me from the very beginning. Intellectually, I suspect that worthlessness is false, but I've never been able to shake the feelings. I can't really be sure. I read about positive self image, and how such a thing is desirable, but it's always eluded me.
People are full of well-meaning but useless advice. They say, You must learn to love yourself, and Happiness comes from within. How does that happen? I wonder. How does a retard who's destined for prison or a career pumping gas learn to love himself? I've heard that advice thousands of times, and the answer still remains a mystery.
Here's another bit of trite advice I've heard: You are a human being, not a human doing. You are more than what you do at work. I have a very hard time with advice like that. It's the doing where I've been successful in life. The being part places me back on the playground, by myself, at three years of age. I don't want to be there.
I've thought quite a lot about the reasons for this, and I think in my case they are probably founded in neurology. Thanks to my Asperger's, I have a remarkable insight into machines. I can see what I do with machines, and I know it's real and it works and it has value. The machines may not thank me, but I know I've made them last longer and run smoother. I've made them, in a sense, happier and healthier, and it's something I can feel good about. I feel a sense of accomplishment from my work with machines.
But I also know I am part of the community of humans, and therein lies the problem. I cannot see into people like I see into machines; like a neurotypical person. I cannot sense another person's joy or acceptance. Instead, I must deduce those feelings from careful observation. Most of my opportunities to deduce such feelings with respect to me are in the context of my work. Unfortunately, other people's responses to what I do are driven by more than just me. They are driven by a person's own emotional state, their ability to afford my work, and their own self image. All those things are unknowable to me.
Yet I want to know them. I want to be part of human society.
All I see is this: as the economy collapses, machines are neglected and many humans fade away or turn ugly. I'm fairly blind to individual expressions of emotion, but I now sense new feelings of unease, fear, and worry in the world around me. Today's humans make choices that are bad for machines against my best advice. They become critical. The acceptance that was observable six months ago vanishes. At the same time, my own economic security evaporates, and I find myself terrified and anxious in response.
What do I do about it? I cannot derive comfort from other people in the way neurotypicals can, because I can't read their emotions or share my own. That's not totally true - I can share them in writing, here, but I can't exchange them in the ebb and flow of actual personal interaction. Some people say, take antidepressants, but medication does not change the issues for me. Rendering me senseless won't bring me acceptance and it surely won't bring financial security.
It's times like this that I realize how truly alone some of us really are. I see my friends support each other, and as best I can tell, it works. But it doesn't work for me, because Asperger's prevents me from receiving or exchanging the messages of support that keep the others going. It seems unfair at times, because people tell me that my calm and logical demeanor is comforting to them, yet there's no comfort for me. Suspecting that people like and support me is not the same as feeling it, when times are bad. I wish it were, and I hope it all works out ok.
Comments
It's interesting to know that you base your self-image on your achievements.
2. "How does a retard who's destined for prison or a career pumping gas learn to love himself?"
To answer your second question: it's probably tough when people keep using words that they themselves find to be insulting.
Today's a bit of a "depressed sounding blog". I can fully relate to what you say about growing up and school versus work but to be honest, my work colleagues are generally not really any more friends than my school "friends" were.
They're only friends because we're all thrown together for a specific purpose and we have to get along to function well together. Pretty much all of them could walk out the door tomorrow and would never look back and wonder what the friendship was like that they left behind.
It's true that work breeds "friends" (acquaintances) but they don't respect you for "what you do" but rather, how you treat them. I'm always careful to be nice to everyone at work - and they respond in kind because we're all grown ups here.
As far as the nonsense advice is concerned. Some is rubbish but a lot is important stuff. The best you can do for yourself is to love and accept yourself. Meaning... in my opinion anyway... that nobody else is entitled to pass opinions or judgements on me because I'm the expert on myself.
The measure of my personal success in life is set by me - by my standards. Nobody else measures up to them because the standards are unique to me. I conquer my depression by accepting it as an aspie thing but it's part of me, like my heart and lungs. It makes me function - so it can't be all bad.
Yeah... I know this is self centred but if you don't care for yourself, how can you expect anyone who loves you to care?
So do I.
God bless you.
But I learned early on that if I got myself into the system I could be included. I was a volunteer peer-educator for students with cerebral palsy in grade 8. I joined the tech committee and help set up dances, and in the end I was the director of the social committee, booking bands for our school. I hated going to dances, but I had a 'job to do' organizing people. I could interact with them because I had an position that allowed me to talk to them, and the rules were clear. I became a school teacher, and now professor , and just got my diagnosis months ago, after working with autistic and aspie children and adults and seeing myself in them. I also realized that ALL my social relationships are based on institutional relationships... because I can talk to people within the heuristic confines of the school or university. I am a prof, so I can talk to people who are profs, students, admin, janitorial staff, very easily, cause the rules of discourse are clear.
I now host dinner parties, where I again know the rules, but with an aspie diagnosis my friends understand that I need to have the activities at my place for stress related reasons. I'm social here, and freak out 'out there'. But it also means I know how to handle 'out there' better cause I know when and why I can do it, with the proper prep.
Anyway, loved the book, particularly for how different your experience is from mine, yet informative. We played with different explosions and I was only a part time roadie. :)
Buying the book for all my family, who pretty must laugh at my diagnosis.
Hope you tour up to Kanukistan!
You are a good person John.
Did you know that more than half the people on this planet are lonely and afraid what the future might bring, others seem to laugh their way through why is that? is it their way to cope with life?
I have many friends who receive their comfort from their pets, dogs, cats and not other humans, maybe they have given up with the human race.
I read that when you are of low spirit to go out and help someone in need, in return you feel good.
I have hope for the future, the road will not be easy but it was not easy for my parents either, my father went through a war and lost most of his friends my mother was moved between 15 different schools, therefore did not make friends.
We are all connected, we are all brothers and sisters, but many people just do not see it, we need to help each other. Your blog is helping countless people. If there were no bad times, how would we know the good times, or can it always be good? No, we are here to learn.
Sending you strength and love
Your European Sister
Just keep doing what your doing and you'll be fine.
I have given this plenty of thought, throughout my life. I still can't figure out why these advices makes other people feel good, while they do nothing for me. In fact, I find them a bit insulting, as if the person giving them means to say: "This is nonsense, but you're probably too stupid to notice." Of course, I realize this is not their intention. Their intention is to make me feel good, or at least better. But when I am concerned with real problems and real difficulties in life, why would empty advice do me any good? Good advice is advice you can actually follow, which predicts good results from certain prescribed actions. It is not some empty cliché that might "sound good", but, in reality, is devoid of content.
Just needed to get these thoughts "on paper", so to speak! Thanks for a very interesting post, by the way.
It sounds like you've tried similar paths. It gets better. One day at a time.
You are widely sought after for your insight and advice, both in the world of machines and by people like me.
Your speaking events are well (and enthusiastically) attended. I had to stand at AANE because the ballroom was full. A ballroom.
You engage a crowd like nobody's business. They ask questions, eagerly lapping up every damn word.
You have a following of devotees of your insightful and entertaining writing. You know that. You've met them. Everywhere.
You are funny as hell. You may have to just take my word for this one. Or listen when people laugh.
From all that you've said, it sounds like you have a wonderful wife. Someone who GETS you. That's big. For anyone.
You have a great kid.
You have a wonderful relationship with your brother.
You built a business out of nothing and it has thrived.
You are an amazing photographer. Your eye is incredible. I cherish my photos. (Most mortal folks don't have an album cover to their credit.)
You can build or rebuild anything and make it work or make it work better. That one I think you know.
You have so many talents - gifts that others would kill for. You have done so much to make the world see past that awkward kid. I wish you could too.
I'm so sorry for the sadness, for the feelings of isolation. We are all there to some degree right now, but I know it's not the same. Perhaps though, it's a little less different than you think.
You are an amazing human being, John. I wish that you could see it.
Times are tough no doubt but here is when you adapt and come up with another "master plan"...as I'll call it, to feed your mind and replenish your lost feelings of success!!! No worries, you can do it..
I'm just going to talk about work and cars.
I think most people view their success and find great happiness through work. Feeling productive and helping people or making things work feels good. Getting paid to do it is validation for your time and effort.
I wanted to let you know my own mechanic has been having a hard time for the past year. He's an independent Volvo mechanic and has kept the Snorting Beast (Volvo V70 1998) of mine running wonderfully. Mark Haltrup of Made In Sweden (and yes, that's a plug) runs the small shop with his wife. Sometimes (most days) she's back there with him helping out.
While the economy is difficult, not getting my car fixed when it needs it terrifies me. I can't afford a new car. More than that, I can't afford to have it broken down in Los Angeles, and because I parent solo, being stuck far away from them is a fate that gives me nightmares.
So I have to make mine last. I hope it'll make you happy to hear that since August I've spent over $1700 getting the Snorting Beast fixed.
Anyway, I am annoyed though. The check engine light went on the other day and I just spend money getting new brakes, a new motor for the rear window, a transmission flush, the AC fixed, and numerous other things. So what shall I do? Why of course, I'll take it in as soon as I can.
Hang in there. Those of us with persnickety cars keep them because they serve us well. We have as much loyalty to these cars as we do our pets.
So there's nothing here about psychology, or asperger's or loneliness. Just reassurance that you'll pull through what's going to be a difficult recession.
Cheers, Your friend, Kanani
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jnnywllms
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Not long after posting my message on your blog I was reflecting on the meaning "aloneness". I know we are not alone but how can I share this with you. By sheer coincidence I came across this video (duration 20 mins.)that I find absolutely fasinating, here's the link
http://www.byronkatie.com/2008/04/of_two_minds.htm
Quote:Neuroanatomist Jill Bolte Taylor had an opportunity few brain scientists would wish for: one morning, she realized she was having a massive stroke.
As it happened—as she felt her brain functions slip away one by one, speech, movement, understanding— she studied and remembered every moment. Her explanation about how our brains define us and connect us to the world and to one another is amazing.Unquote
Would appreciate your thoughts !
Kind Regards,
I have sensed the same, and I don't quite know what to make of it. It seems like there are good reasonable ways to deal with the financial woes the country faces, but that same fear and uncertainty means that it won't be done.
About the aloneness.
There are three of us with AS/Broader Autistic Phenotype in our house, and we are a family. But we do it differently.
When we are together, we get to be alone but together.
We are different, but being different in the same house helps.
And somehow, that is comforting.
You are remarkable in your successes.
I wish I could help. Perhaps a freshly baked cake? :)
KIM
N
I, although not AS, had similar experiences as a child, the exclusion from others. I have a neice and a nephew (much more severe)who both have been diagnosed with AS, and my neice is so much like I was as a kid it's crazy. It also makes it a lot easier for me to be a little more patient in some ways with her. You have to give her logic and sometimes she outfoxes you (at 9. I'm intelligent and that is humbling to say the least). My nephew (14) has turned to home schooling because he was having such a hard time. They are both brilliant kids, and their futures are so bright and frightening at the same time. Human ignorance ignites me. Thank you for sharing your experiences so that those who do not understand exept intellectually, can be sure to not further burden these kids with our own ignorance.
You have described me and my school experiance better than I ever have--Thank You.
At 47 and in University and work it is still that same feeling but I have love at home so I can endure it.
I personally am trying not to focus on all the negative discussions about the economy. Yes, it is scary, but it's hard to know what news sources to trust because most of them have become so dramatic and exploitative rather than just telling the news like they did twenty years ago. The days of Walter Cronkite are over - he'd be out of a job today faster than you can say "Jerry Springer." Unhappy and scary stories sell better than positive, reassuring ones. It makes it hard to know just how bad a situation truly is. I take it day by day, tighten my belt where I can, stay calm because it will all come back around eventually, and stick with my family and friends and people I feel loved by. It helps a lot.
Thank you again for bringing Asperger life to the mainstream. My goal is to have my son be as successful and decent a man as you, Mr. Robison
Thank you
Ray Angely
Charleston, SC
I have not written in a long time, being wrapped up in my own stuggles. What hits me most, is that I do no think your struggles with alone-ness, anxiety, sensing fear and negativity are particularly Aspergian. I think this a human thing many of us deal with and that is partly why there is such need, and success, of spiritual guidance and books that speak to how we cope with this human condition. Your approach to understanding and coping may, however, be very Aspergian, and male. You attempt to apply reason towards understanding and action for regrounding. Actually this is not a bad thing for most of us, although as you note, many do find comfort in each other's company, some solace from physical contact, laughter, community. Ultimately many turn to 'faith' and GOD in those most alone of times.
And then turn to community to help sustain it?
Mostly it seems we humans muddle along.
I hope you found a bit of solace in community at the party for Carlos. I hope you find a bit of comfort from your contact with me. You certainly have provided some and a perspective that at times has helped me too.
With or without Apergers, I too have felt the challenge of 'fitting in' and finding my place. Only I have not measured up to what my own notion of success could be. I also find I do not usually feel competent with machines and managing stuff- so can't find solace there
I can empathize with the woman who is stuggling with mental illness and emotions. The logical, rational mind can be a buffer. When one can achieve measurable success because of one's achievements in the world (be it with things or people) that can also help booster our sense of selves, our esteem, and strengthen our core.
Yet as you note this sense, based on outer feedback will need refilling- it is temporary, illusory.
While it is true that our Being is way more than our Doing, it is obvious that the strokes people get from their Doing effects their sense of Being. And when one has economic means or returns from one's efforts, one is not necessarily going to be happy, but certainly can choose to do a lot more to provide comfort to oneself and /others towards happiness. At least one can tend to problems more easily, buy help and healthcare, besides clothes or TVs :)
Anyway I am not sure where to go with this. My father used to say Rich or Poor it is good to have money. And then all the older folk said what is important is that you have your health. Be thankful for that and help all of us towards maintaining that.
My name is Lisa, and I can't look people in the face when I talk to them.
Your friend.
If it helps any, your book has really helped me. I thank you for writing it. I had never heard of you or your book when I found it. I just happened upon it at Barnes and Noble on a "date" night with my husband not long ago. The cover grabbed me and low and behold it was about AS...something I had been suspecting I had.
After reading Chapt. 20, it was pretty much certain I have some kind of neurological problem...most likey AS. Because of your book, I don't hate myself so much as I did a few weeks ago. Thank you for that.
I hope the economy picks up and your business too. You are doing a great thing with your car work. We had a Saab once. We had a pretty good guy, but would loved to have had someone like you to work on it. We'd probably still have it. Brought our only child home from the hospital in it.
We got it new and it was our favorite car ever. We've never been able to afford another one.(Our only daughter has cystic fibrosis...lots of medical expenses). We gave it to my sis-in-law. At least it's still in the family!
My husband loves English cars and has a GT6 and an old Spitfire. The GT6 is a beauty. Neither are running very well though and we won't be fixing them very soon.
Like you said, the cars...no matter how loved...can go unloved when finances get tight. At least for a lot of men, they are high on the list as soon as things pick up in the economy. Just hang in there and it will get better.
Sending a ((hug)) for your sadness.
Kat
But those appoints and experence from someone that spring - I realize that I did and it because of others I beginning to speak and desired to help others.
I don't know if others are like myself and did desired to do thing with others - but when they try to do it - they just seam like others couldn't understand. Maybe it because I just could not stop thinking to think about others feelings.
So what happen to me is that I would discard my feelings and just find something technical to amuse me and sometimes I would have to find another. But deep down there are emotions that grew and hurt. But I still linger on with technical stuff as my friends and such. But deep and down something was burning.
So Spring of 2007 came along and I was touch by someone. I started changing and eventually led to loosing 25 pounds and taking professional dance lessions. One way to get by fear of touch is to take dance lessions. Dance lessions are way too expensive and now I am doing step aerobics which I believe is extremely helpfull for Asperger's. Why because it make you not think about things. It also gets you out with others and you do a lot of different things.
Any way I also took a mission trip to Costa Rica and while I was there I had a Swetish Massage. I quess my fear of touch is solved.
But my fear of aloneness is still hear - I still find myself watching TV alone with dog or on the computer. But I desired that to change and it will change. I am hoping one day that I can help others with Asperger's hopefully with my success. Giving others hope will make the many years of my aloneness worth it.
I am starting to speak out on my Asperger's and I believe that one day my personal life will never be alone again.
My son, who will be turning 8 on the 23rd, is currently being tested and evaluated for Aspergers. For the longest time I've been in denial that he may have it. As a mother, it just breaks my heart to watch him struggle and seem so alone. Mother's hold a great many fears over what they're children may or may not have to deal with growing up and this is just something more that brings all those fears to light. But, thanks to your blog, I'm learning a lot on how to help my son (hopefully) and lessen some of those fears. Thank you.
~Lisa~
The only good part about it is that my experiences seem to help me understand and help my oldest son with autism and my second son with sensory issues due to PANDAS.
Be of good cheer if you can.