John Robison On Aloneness, Social Failure and Asperger's
Managing Editor's Note: John Robison, author of Look Me In The Eye (now available in paperback) wrote this entry about lonliness and sadness and Asperger's for the Psychology Today blog (Click HERE to read the original post and comment at Psych Today, the verbiage is below.)
If you haven't read Look Me In The Eye, I highly recommend it (click here to purchase) for an intimate and sometimes shocking glimpse into his childhood, teen years and adulthood as an "Aspergian." The text books tell us that people on the spectrum do not have much emotion and that they enjoy being alone. Read this post and see for yourself. John is an elegant writer, and I am proud to call him my friend. Kim
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.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.
a comment from December 10. He will be happy just like anybody else will. This is just the beginning for you to make a big difference in this world.
A difference to help anyone who needs it to be a somebody.
You should seek as much help for him as you possibly can.
Now is the time. As my mentors of my life tell me, "You can do it" like Nike!
Anybody can!
Support, comfort, build on his special interest, social skills, it all helps...
Hope you all have great holidays!
Posted by: Jason Ross | December 17, 2008 at 08:25 PM
my son was diagnosed today with Aspergers syndrome, he is 5 yrs old. Im in shock and disbelief, all i want is him to be happy :-(
Posted by: Graham | December 10, 2008 at 07:08 AM
John,
Thank you for sharing your thoughts! The world is a richer place for your being in it. I lead a weekly support group for college students with ASD at a state university and we have benefited as group from the many insights in your book!
Thanks again,
Rachel Ford
Posted by: Rachel Ford | December 08, 2008 at 09:40 PM
Andrea - I spent some time lookling at that comment. Trust me. And I did respond to Jerry. I agree the comment was terrible. But it gives a glimpse into perhaps another person with Asperger's way of thinking - sometimes it's best to let people expose themselves. John's a big boy - and as I said, I made sure I answered Jerry. I do appreciate your mother bear instincts. :)
KIM
Posted by: Stagmom | December 08, 2008 at 08:48 PM
John,
Thank you for sharing your thoughts and feelings with us. I do appreciate you putting yourself out here for us to learn about what it is like for you to have Aspergers.
Kim,
What purpose does Jerry's comment serve? I can't believe you would post something like that. It's more than a little harsh it's downright cruel. If people on the spectrum are going to come here and write about their most intimate thoughts and feelings I would hope you can provide them with some kind of protection from that kind of abuse. There is nothing whatsoever constructive or worthwhile in Jerry's comment. You should have hit the delete button IMO.
Posted by: Andrea | December 08, 2008 at 07:51 PM
John,
That was beautifully written. Thank you for the insights you always bring to those of us who want to better understand Aspergers. Please keep writing and telling your story. And if you suspect that people like and support you, it's because they do.
(On a side note, I was disappointed to see a bully like Jerry given a bully pulpit on AoA. His sarcastic attack post obviously expressed feelings of inferiority towards John and all that he has accomplished. Jerry, it takes a lot of guts for someone with Aspergers to tell the world his innermost thoughts. If you yourself have Aspergers, then you should know that - and I'm sorry if a lifetime of being bullied has turned you into a bully.)
Posted by: sign lady | December 08, 2008 at 07:05 PM
Here is a better link to the Ullman book. You need to click around on the other website a bit to get to it.
http://www.drugfreeasperger.com/
Posted by: Intellectual Adequacy | December 08, 2008 at 10:50 AM
"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."
You need to realize that you are basing your perception of yourself on what happened to you when you were a child. You are stuck in that particular groove, the trauma of which was so intense that you are unable to shake it off. To move on, you need to release your spirit so that it can achieve its fullest potential. Your spirit is untouched by your "worldly" success because as you said it, it is nothing but an illusion.
I would recommend that you seek the advice of a classical homeopath who would tap into your mental and emotional symptoms to prescribe an appropriate constitutional remedy for you. There have been cures out there, Judyth Reichenberg-Ullman is one well known homeopath who has even written a book on the subject.
http://www.ritalinfreekids.com/
Posted by: Intellectual Adequacy | December 08, 2008 at 10:43 AM
Hi, Jason. Thanks so much for sharing your thoughts here. Friendship and respect - the building blocks of happiness for sure. I'm so glad I've gotten to know you - and I love how fondly you speak of your Mom. I hope my girls feel the same way about me, even though they may not be able to articulate it as well as you do. Although this morning my Mia (almost 14) looked at me first thing and said, "I love you." Made my day!
KIM
KIM
Posted by: Stagmom | December 06, 2008 at 05:24 PM
Hi everybody I am Jason Ross from Rockland County, New York. I am 29 years old working in the medical field. I would like to share my views on Autism Spectrum Disorders. My life with Asperger Syndrome has given me the wealth of knowledge from many mentors who try to help me in my life. Some of these mentors have become intensely frustrated when I feel I want to be right when I am wrong. Asperger Syndrome is a way of life which has its strengths and weaknesses just like any person or thing itself.
Individuals with Autism Spectrum Disorders just need to realize our weaknesses which can be strengthened just by listening. By listening and focusing, we can become just like anybody else.
The song which is of greatest influence and hope to me is Blessed Union of Souls song called "I Believe." I think it is beautiful and I really love this song as well as R.Kelly's song "Believe."
People come in different packages and we are all unique in our very special ways. I want everybody to feel this inside of themselves. No body should be ashamed of who they are even though at times in the past I did. It sometimes takes time precious time to achieve the goals we want to achieve. I am still trying to do this. These songs really help me out whenever I am feeling impatient with my life.
Everybody needs to listen to each other to help one another. No body should feel they are too alone and scared of who they are because there will always be somebody who wants to help. If each and every one of us share our lessons like as a mentor, it would be the greatest gift to somebody like myself who needs it.
I have had the pleasure of enjoying many mentors throughout my life especially my mother. Mentors are the greatest gifts life can offer us. There is so much each of us can learn from every individual who plays a part in this world.
Asperger Syndrome and Autism is just a way to see our strengths and have mentors in our life help us with our weaknesses. We may have many weaknesses which bring us down, but as long as we focus on our weaknesses, we better ourselves.
Together we can all make a great world greater. I believe we should believe in every one to achieve their success which will bring positive energy in to the world. The most positive things will help others realize everybody is a contributing member of society whether big or small.
The greatest gift all of us can receive is the gift of friendship and respect. People with Autism Spectrum Disorders need friendship to enjoy learning from other people. I feel Adults with Autism Spectrum Disorders should seek out children on the Autism Spectrum to give them mentorship to teach these children ways to handle life better. It would be a extraordinary experience for both the adult and child with an Autism Spectrum Disorder.
These are my views.
Posted by: Jason Ross | December 06, 2008 at 05:03 PM
John the para in regards to emotions feeling really hits home with me, the not being alone, but feeling so lonely …. a scenario I feel many of us on the with ASD can relate to
“ 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"
the empty void which many not on the autism spectrum find hard to understand, and unintentionally often make the divide bigger, we do not just see and express situations, we often sense and really feel deep inside, but at times it can seem like living in an invisible cage, because those intense emotions are tapped behind a glass screen and ours alone, the connection with the outside just is not there.
I also so agree we sense the unease within this world, the cities have become boiling pots waiting to happen and feel many of us being more aware are more user friendly, we quite possibly consume less than the average person and I feel are more eco friendly, considerate to the world and animals around us… partly I feel this has some think to do with we not only see, but sense the unease, unrest… somehow we seem to hae a deeper connection with the planet, we see details in the small detail and often notice things others may never see… since discovering I had aspergers and many associated conditions not so long ago, my life has become one of self discovery… I have set up a web site and forum and I am now in the process of writing my first book, peple like John remain a inspiration to me….
What ever I do the future is what will happen, while it intrigues me. My anxiety comes from my own complexities, my personality being blurred edges of reality, as diagnosed late in life what part is aspie and what part enforced by none ASD people. As in Oscar Levant quote: "There is a thin line between genius and insanity. I have erased this line." Our complexities of mind, our obsessive tendencies push the boundaries - disorders such as OCD, bipolar maybe they are just extremities of difference. Labels we are given by professionals trying to figure us out, and then feel a need to want to change, conform us to fit into their world - but we will never fit into neat stereo type boxes!. This is not meant as a statement, just a process of thought, just an idea to get others thinking differently, should we in fact label every difference? or allow for more extremities in this world, we can not explain everything - autism, the universe and never will. But until everyone is more accepting and understanding of diversity and difference we will continue to feel alienate from the planet we were born to be. - Alyson Bradley – Aspergers Parallel Planet (Web Site) / asplanet forum www.asplanet.info
Posted by: Alyson Bradley | December 06, 2008 at 04:41 PM
This is a note I received from an adult with aspergers:
"personally want my aspergers REMOVED, it's not a gift it's not additional skills, it's a CURSE.
as soon as genetic cures come out I am removing myself from the list of people with it."
It doesn't sound like a party does it? Hence why we have a lot of work to do. I would rather our children grow to live fulfilling, healthy, happy lives. We have work to do.
I admire this persons courage to email and reach out and Johns continuing courage to provide a window into his world. It helps other folks understand that autism and the spectrum is not always about fun and celebrating individuality but it can be painful on a multitude of levels. I respect, honor and want to help.
Posted by: Lisa | December 06, 2008 at 02:59 PM
John, I really appreciate your writing. It is very beautiful and sincere. Your ideas are so good, well thought out. I too have had some experience of not understanding other people, so from that standpoint, I would say- Just keep going. Life gets better. These things improve and you will find things to do that make your life better. Do you like to spend time with children? There are so many kids of age 3 and up who need people to understand and love them. You might not realise this when you first meet them, but actually out of every 3-4 kids, there is usually one who specially needs someone like you. And we all need people like you to help us tell the world about Aspergers, autism and to help us in this big war against these disorders. Please help us.
Posted by: Cherry Sperlin Misra | December 06, 2008 at 02:33 PM
By the way - while John wrote this, I can assure you that John is not a doom and gloom kind of man. He is encouraging, knowledgable on so many topics, funny, interesting and intriguing. But we ALL experience highs and lows - regardless of whether we're "nypicals" has he calls we neurotypicals or not.
Posted by: Stagmom | December 06, 2008 at 01:38 PM
Jerry -
I have a B.A. in English from a very good college. My mother and stepfather have PhDs in American Literature from Harvard. I grew up reading lots and lots of books, and all my life, in various situations, people have praised my writing ability.
I don't say this to brag, but to make the point that I know something about good and bad writing. I really dislike writing that does not say what it is trying to say.
I find this excerpt from John Robison's book to be very well written and expressive. This is an excellent description of issues that are difficult to describe.
I don't have time to write more now, but I may write more later.
John Robison, I wish you all the very very best that life has to offer. Kudos to you for continuing to struggle with and express the difficulties of Asperger's. May you find sources of joy.
Posted by: Twyla | December 06, 2008 at 12:38 PM
Jerry - that was more than a little harsh. I think it takes courage to tell the world that you experience difficulties, especially as it related to autism or Asperger's, since many people want us to believe that the diagnosis is wonderful. Reality check? It's not always wonderful. I'm grateful to John for his honesty. The richest man in the world, if he feels lonely and disconnected, is not happy. Sure there's always someone "worse off." That doesn't take away from the genuine feelings of a person who feels down.
Thanks for your comment.
KIM
Posted by: Stagmom | December 06, 2008 at 12:03 PM
That was the stupidest thing I've ever read in my life. Incoherent, rambling, and with no real messge at all. And you're complaining about not having financial security? Cry me a river dude. It's not like you've got Down or Phelan-McDermid. It's entirely your fault that you're in the situation you're in.
Posted by: Jerry | December 06, 2008 at 10:13 AM
When I recently wrote to Monica Robbins of channel three news, to plead with her to please cover the vaccine issue, I was sent a reply from her stating that she’d already done so. When looking at the channel archives on the web, I found nothing at all about vaccines, and when looking up the topic of autism all that I could find was a story about a man who had ‘come to terms’, more or less, with his aspergers. This was, I presume, meant to be the stereotypical, warm fuzzy gee whiz feel good story. The man had a couple of advanced degrees and yet was unable to hold down a job beyond that of a janitor.
Why, I can’t help but wonder, am I supposed to be happy for this man, as I am led to believe from reading these stories—as I am always led when reading these types of stories?
Here is a man who has worked his rear end off to be the very best that he can be, who has educated himself, who has shown a willingness to work hard. And yet he’s relegated to the lowliest of positions. Why? That’s easy. Because he doesn’t schmooze. He doesn’t hobknob. He doesn’t have the social skills that are all that are necessary to be a big success in America.
Look at Monica. I wrote her back asking her to please point me toward the stories she’s done, as a journalist, about vaccines, as I was unable to find any evidence of them. She never did get back to me. That, as I understand it, is her job. To present the facts about important topics to the public. And yet, though she says she has done this, as far as I’m able to ascertain she hasn’t.
Something tells me, though, that she is just a star at the local charity parties. Just a butterfly who gets on well socially with everyone. And so, she is successful.
I remember the day that Oprah interviewed Katie Wright. I remember thinking how lucky most people in the autism community were, because they all had somebody they could call and rejoice with. Of course they also, many or most of them who post to blogs such as this one, have children who are severely affected, and so I have to be thankful that mine are not.
Yet it was only a short time later that my own, officially unaffected daughter, employed for only the second summer of her life, was fired from a job. How do you explain to a child who is doing so very well in college academically, and then gets fired from her summer minimum wage job, how the world works?
You don’t, if you’re an aspie. You just hope they’re able to figure out some way to muddle thru.
I, too, have been on antidepressants, and found that they actually seemed to make me more depressed. I have wondered if I am not unusual in this. I’ve wondered if there might not be a group of people, perhaps those on the spectrum or some related group, who react in this way to these drugs. You see so many incidents where teenagers on them have gone berserk. In my case I was lucky and have only some pretty bad depressing poetry to show for my time on them.
There’s this idea that I have had since I gave birth to my first child, and they kept on sending me home from the hospital saying I wasn’t ready although whenever I timed my contractions I met the criteria that said I was. I got this idea then that we’re all really pretty much alone in the world, when the really scary stuff happens.
Try to keep busy, John. I find that that is the best thing for my frame of mind when I’m feeling down. I know that that is hard when there’s no work to be had. For other people, their interacting with other people is a big part of how they keep busy. I have a large family to care for, but I’ ve never been one to socialize, even at this time of year.
My younger son spends a lot of time with books. Read a lot. Perhaps you could write another.
Posted by: Robin Nemeth | December 06, 2008 at 09:56 AM