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Feb21
Autism and Self-Worth
Filed under: Belonging, Communication, Community, Disabilism, Disabilities, Loneliness, Marginalization, Spectrum Pride;15 CommentsWhen I first started therapy (in 1983), I learned that I had to work on improving my self-image. I learned that I had low self-worth, and that if I worked very, very hard, my sense of self-worth would improve.
And it did. I think. At least, I was under the impression that it improved, because I was feeling ever more confident about my abilities as a working woman, a wife, and a mother.
But now I’m experiencing a new phenomenon. I no longer have low self-worth. What I have is no self-worth. At all.
That’s right. None.
I am not exaggerating. Last night, I looked at myself and realized that there is a big empty space where my self-worth ought to be. How my self-worth snuck off without my noticing is beyond my comprehension. But it’s gone. I’ve looked, and it just ain’t there.
Perhaps it went like this: Seven years ago, when I married Bob, I quit my full-time job to become a full-time homeschooling mom; then, a few years later, my daughter went to regular school, and the homeschooling ended. So, in the past seven years, two of the most important ways that I built my self-esteem have gone away: working at a job and homeschooling Ashlynne. During much of that time, I lived in a community that was not very welcoming to me (to put it mildly), and that experience further contributed to my self-esteem issues.
But, you see, I still had “self-esteem issues.” There was some self-esteem with which to work. Now, it’s just up and left.
It’s possible that with working and homeschooling gone, my autism diagnosis set off a massive identity crisis, followed by the realization that my entire way of living had to change, followed by a toxic explosion of internalized disabilism. Whatever the reason, I feel no self-worth at all. I do a beautiful job repairing a quilt, and all I can see are the imperfections in my work. I knit my husband a sweater from the Icelandic wool he spun himself, and all I can see are all the mistakes I made. Everyone in creation is telling my husband what a wonderful sweater he’s wearing, and it has no impact on me at all. People tell me how much they like my writing, and it doesn’t penetrate the dense fog I’m living in.
It’s gotten me questioning how one builds self-worth in the first place. I mean, did I ever have self-worth, or did I just do a lot of things that convinced me I did? Having a job and being a homeschooling mother are both wonderful, but they were always going to end; therefore, I based my self-esteem on impermanent things. That seems like a dangerous move from where I sit right now.
I used to have a decent sense of myself because I always felt that I could fake it well enough to get by. I could make pleasant conversation; I could go to soccer games and act like I belonged; I could chat it up with the neighbors about anything and everything. But working hard to fake it no longer applies. I walk around with a headset and don’t speak or hear very much at all in the outside world. Pretending to be normal basically went up in smoke once I realized that I had to wear a device in public that most people use when mowing the lawn.
Worse yet, my conversations with my therapist seem to be having a negative impact on me. For instance, last week, I told him that I feel like I need to stop talking entirely when I’m out in the world. He kept saying that perhaps it wasn’t all that black and white, that I could be more moderate, check in with myself, and talk more when I wanted, and less when I didn’t. What he doesn’t understand is that for me, moderation and autism do not mix. Moderation can only apply when one has a fairly moderate experience of the world. When one’s experience of the world is extreme and intense, a moderate solution can be worse than none at all.
I’m not sure that my therapist realizes that the minute I open my mouth, I’m already in way over my head. I crave communication. I want to keep talking. So much. But I’m playing catchup with everyone. I’m always a few clicks behind the conversation, and I have to make a tremendous effort to follow what people are saying. When it comes time to speak, I have to call on resources I don’t often have. Plus, I am so used to working hard at speaking that I forget that I’m actually working hard at speaking. It’s always a strain, but the strain is so familiar that I don’t even notice something is wrong until it’s way too late and everything in my body hurts.
I know that my therapist is responding to my upset about my social isolation and trying to come up with solutions, but I don’t need solutions. Unless I happen to run into a dozen autistic people in my local community, my social isolation will remain. So perhaps a better strategy would be to talk about how to handle the seriousness of my disabilities and their consequences for my life. I will never be able to walk through the world as a hearing person. I will never be able to have a relaxed conversation out in public. I will never be able to pass for normal again. I would like some help dealing emotionally with the gravity of the situation, not all kinds of ideas about moderation that simply cannot work for me.
Some years ago, I ran across a book called Shambhala: The Sacred Path of the Warrior by Chogyam Trungpa. The author writes about the spiritual warrior in a way that describes the impulses and demands of my autistic experience. I was drawn to the following words even before I knew about my autism:
“[The spiritual warrior] has no room and no desire to manipulate situations. He is able to be, quite fearlessly, what he is.
[P]aradoxically, the warrior finds himself more alone. He is like an island sitting alone in the middle of a lake. Occasional ferry boats and commuters go back and forth between the shore and the island, but all that activity only expresses the further loneliness, or aloneness, of the island. Although the warrior’s life is dedicated to helping others, he realizes that he will never be able to completely share his experience with others. The fullness of his experience is his own, and he must live with his own truth. Yet he is more and more in love with the world. That combination of love affair and loneliness is what enables the warrior to constantly reach out to help others. By renouncing his private world, the warrior discovers a greater universe and a fuller and fuller broken heart. This is not something to feel bad about: it is a cause for rejoicing. It is entering the warrior’s world.”
I’m not sure I’m ready to rejoice.
© 2010 by Rachel Cohen-Rottenberg
15 Responses to “Autism and Self-Worth”
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Loretta Rietsema February 21st, 2010 at 7:23 pm
Rachel –
Great piece – in the world of recovering alcoholics/addicts, there seems to be a familiar phenomenon which I, with great fear and loathing, call the “what’s it all about, alfie?” syndrome and its even more terrifying cousin, “is that all there is?” (old school alcoholics tend to strongly identify with the old Peggy Lee ballad . . . . ). Anyway, as my kiddos are slowly leaving the nest, I see lots of opportunities for these two spirit-crushing entities to invade my soul and already find myself trying to engage in “evasive maneuvers” – creating a women’s sober living house, exercising more, planning trips, yada, yada, yada. What’s ironic is that now that the time is presenting itself to do all of the things that I had to put on the back burner for so many years during childrearing – reading books, spiritual retreats, quiet walks – I find myself basically terrified of slowing down, taking it easy, and being alone – go figure.
Laurie.
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Liz Aucoin February 21st, 2010 at 8:21 pm
Is there any way that you and your therapist could communicate by keyboard, like an internet conversation (across a desk on laptops–not with him looking over your shoulder)? Some of what you’re going through sounds like empty-nest stuff–but it may be that your daughter was just the best reason you’ve ever had to deal with the world head on, and it may have sidelined your self-esteem issues rather than resolving them. Maybe you’re depressed about having autism, but you have recently been dredging up some very painful childhood traumas, and what you may be doing is just “remembering” what you “learned” from those awful experiences (that Rachel is not worth any effort, because that’s what your parents taught you). Think about that child you were as somebody you need to mother to healing. Ask yourself what you need to do for “her” (yourself) to remind her that she is a good person who deserves the best that life can give her. Because it seems to me that the internal disabilism is just your “proof” that you are “too much trouble, not worth it, too stupid to change, weird” (the child in you who feels so unsure of herself recognizes that the negative perceptions of your autism are an old familiar refrain of the abuse that you left behind.) I don’t know how quickly this kind of healing can happen. What I can offer in the way of hope is the reminder that the brain is plastic, and, based on your history, you have risen to meet tremendous challenges in your life. Each time you were faced with one of these, you probably took time to adjust, gather resources and forge ahead. Many times it probably felt as if you just didn’t have it in you to finish, and yet you did. I don’t know what it will take to get “unstuck,” but you’re not a quitter.
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John Dale Lyons February 22nd, 2010 at 6:28 pm
I feel this piece very much. Many of us, including me, suffer with an absence of self-esteem. Remember that you are a person of worth, even if you don’t feel that way.
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what Liz said.
(really, i couldn’t say it better) -
I consider myself a “Survivor” of traditional psyc, therapists . Knowing now, that I am AS , makes sense of their bizarre misconceptions of my experiences, feeling and thoughts….(I use to assume that therapists were just stupid and now I realize it is just a difference in brain wring and the poor things really can’t help themselves ) .
That said, a few did have a few good points……One was their observation that I judged my own inadequacies much more harshly then I did those of other people . If someone else said the things about other people that I said/thought about myself, I would think they were heartless jerks . I think in part that is from sharing a less then positive response from family and peers towards my weirdness but it also seems ingrained in some aspies attention to detail and desire for “perfection” . We do notice what is wrong because that is the logic first step in making improvements….the trick is not internalizing….Bad stiching=bad me . I certainly don’t do that to others, so why do it to myself ?
I think it must be harder for someone like yourself who has had what people would call traditional successes….marriage, child, adult job . Even if you had to fake your way through social situations you had the illusion of being “normal” . I always knew I couldn’t do things “normal” people did, so had a life time of excepting my limitations and finding other things to judge my value has a human and decided to value myself for what I value in others……”are they nice, non-materialistic, interested in learning ?” Those are all things I value in others and I try and be the best at those I can and forgive myself when I don’t measure up to my own standards just as I would forgive them .
Lord let me forgive myself as I forgive my debtors…works better for me then the Lords prayer .
I would suggest that you look at some RET theories as cognition/perception is important to how we experience hat happens in our lives . or as Shakespeare said….(I think?) “There is no such thing as Heaven or Hell but thinking makes it so”….. . or my interpretation of that….What we think about our experience creates our heaven and hell more then the experience itself .
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Bob Rottenberg February 23rd, 2010 at 12:24 pm
I see “self worth” in the same way that I see the concept of “soul.” Just as I believe each person has a pure soul that cannot be touched, I believe that each person is endowed with self-worth that also cannot be touched by outside forces. It is there — but whether we choose to recognize it is another concern entirely. This is why it’s “so easy” for those outside of ourselves to see all those wonderful things about us — while all we can see are the faults. And the danger, of course, is trying to compare one’s own “worth” to that of others. Always a big mistake! Trungpa has it right: it IS time to rejoice.
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I have been noticing a lot of nevers, always, permanentlys and nones in your recent writing.
I challenge those. Life itself is a state of flux: I disagree that you will *always* be this disabled, *always* find it this difficult to function. Brains and nervous systems CAN heal, albeit slowly. I don’t think you’ve allowed anywhere near enough time for your overworked nervous system to repair itself. I think you will see noticeable improvement in a year or two. Yes, year.As for the missing self esteem, I’m really not surprised. You’ve gone through some major stressful changes…why wouldn’t your self esteem take a dive? In fact, I think it would be *abnormal* just to skate through all these extreme changes all devil-may-care.
I don’t think you’re as stuck as you think you are, really. I do think there’s hope for your future but you need to allow your body time to heal.
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I agree with Liz and Bonnie.
You have had the experience of making sense of a world that did not make sense. You have had the experience of your world turned upside down, inside out. You have had the experience of having to reevaluate most of what you thought you knew about yourself and the world. Don’t you think that any of this can happen again in the future? So, if you can, it may be helpful to replace the nevers, evers, always with “todays” and “this week”. You’ll find out about tomorrow and next week soon enough.
Two other thoughts. First, it seems to be that you are trying to shape yourself to a new “Aspie Normal”. It seems that again you have standards (having self-worth) that you think you are failing. Do you know that you are allowed to not meet any of these standards? That you can allow yourself to not feel any self-worth for today? (Tomorrow will be a new day.) That you can allow yourself to not feel affected by someone’s praise for one’s work (today)?
The second thought was more like an impression: Your piece reminds me of someone who is surprised that months after a personal loss they still can not go on with their “life as usual”. So I am wondering which of the seven stages of grief you are at, whether you still allow yourself to grieve (e.g., for the loss of your old self-image) and stay within the realm of incredible sadness, and whether you have allowed yourself to let it go (by whatever ritual suits you).
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“moderation and autism do not mix”
Thank you for saying this. It is huge.
I think it must be something in the air because I am feeling all this right now, too. I feel completely deflated and useless.
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Jennifer February 24th, 2010 at 9:52 am
I think that Hillel’s formulation: don’t do to another, what you wouldn’t want done to yourself” is better than the love another as you love yourself. If there wasn’t any self esteem there, there couldn’t be the empathy that you have for others. You try to understand others and accept them. I really respect that. I’m sorry that you sometimes don’t get understood or embraced in return. That’s why you’re feeling down, perhaps.
I’m sorry if I didn’t give you enough understanding, when I knew that you are doing the best for yourself, and you have every right to love (the autistic) you, and give you the same contentment that everyone deserves. -
Thank you all for your love and wisdom. So much to meditate on! I’m very grateful.
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you don’t know what effect you have on others just by being how you are, and honest about what you face each day. thank you for all of it.
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Thank you, Bluedancer. It means a lot to me.
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A lot of very thought provoking questions there. I love how deeply you think, and how similar your thoughts are to mine. I would base self esteem more on what kind of a person you are than what activities you do. That is much more permanent. You are thoughtful, insightful, wise, and you CARE about people. That’s big.
On another note I want to apologize. I have been very negligilent in not repying to an email, or several emails, you sent months ago. I felt overwhelmed by the request for reasons I will explain later and I had to simply not think about it. But I felt very guilty, and never stopped thinking about you. I know this is better said in an email but I have this mental block where I start to panic when I think about that subject too much so I thought this was better than nothing.
On a third note, I was thinking about you tonight, when I was writing a blog about self advocacy. No one I know advocates for herself better than you; you are an inspiration to me and so many. I mentioned you in my entry. If you’d like to see it, it’s at http://aspiefrommaine.blogspot.com/2010/04/self-advocacy-conundrum.html
Thanks
Kate -
Hi Kate,
Thanks for your comments! When you are ready, please send me an email so we can chat.
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About Me
I'm Rachel Cohen-Rottenberg, and I publish this blog, Journeys with Autism. I'm a wife, mother, writer, singer, artist, photographer, community volunteer, and the chapter leader for the Vermont Chapter of the Autistic Self Advocacy Network (ASAN).
At the age of 50, I awoke to my place on the autism spectrum and discovered a world of gifts, struggles, and life-changing possibilities. My latest book, The Uncharted Path: My Journey with Late-Diagnosed Autism, was published in July of 2010. My work has also appeared in Shift Journal of Alternatives: Neurodiversity and Social Change and in the Disability Rights and Neurodiversity section of the ASAN website.
My Memoir
"The Uncharted Path is an autism autobiography unlike any I’ve ever read.....I’d recommend The Uncharted Path to anyone on the spectrum, to anyone who has friends or relatives on the spectrum, and to anyone who cares for people on the spectrum. Her book is written straight from the heart.” —Gavin Bollard, author of Life with Asperger’s
“Cohen-Rottenberg is emotionally honest and skilled at relaying the stories from her childhood and adulthood that made her the person she is today....A highly recommended read."—Kate Goldfield, author of Common Scents: Adventures with Autism and Chemical Sensitivity
“What Rachel has written, few others would be able to....An enlightening journey."—Jon Gilbert, author of Same Child, Different Day
My memoir The Uncharted Path: My Journey with Late-Diagnosed Autism is now available in paperback for $17.95 and in PDF format for $8.95.
To purchase the book, please contact me by email. I accept payment via PayPal, by check, or by money order. You can also find the book for sale in paperback on Amazon.com.
Thank you for your interest in my work.
Rachel Cohen-Rottenberg
rachel@journeyswithautism.com
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