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May24
Toward a New Sense of Belonging, Part 5: Self-Acceptance
13 CommentsThank you all for your honest and insightful words in response to my last post. I feel so supported and appreciated. In the world of autistic people, I can finally feel comfortable being myself. I can speak from my heart, I can say what’s on my mind, and I can know that it will be okay. After a lifetime of anxiety about saying the right things and wondering whether I’ll ever be accepted by a group of people, your acceptance and appreciation of me is a great gift.
In the process of reflecting on all of your responses, I’ve come upon a new realization. If I feel at home with myself and accept myself as I am, then I can continue to feel at home with other people who experience the world as I do. The key to developing a new sense of belonging is to cultivate a new sense of self-acceptance. As LizzieK8 pointed out so succinctly, “Accepting who you are is really the next step.”
For most of my life, the road to self-acceptance has been part of my spiritual path. I’ve done some good, useful work on this path, but I’ve never felt sufficiently grounded. In these past few days, however, my spiritual path has come down to earth and into my body. Walking that path means paying attention to the minute particulars of what I can do from day to day, understanding the work that I can’t live without, and getting a clearer sense of the kind of help and support I need.
The hardest obstacles on the path are all the negative connotations of the word autism. Like most people growing up in the larger culture, I was told long ago that autism is a scary word. The word suggests so many things that I now know to be false: that I don’t have feelings, that I’m not quite whole, that I’m “less than” everyone else, and that my family is to be admired (and pitied) for putting up with me. I know that this nonsense is all untrue, but undoing it is very hard work. Once a lie comes in and sets up house, it takes a lot of doing to root it out.
So, I’ve been looking at the internalized negative messages about my autistic traits, and I’ve started rewriting those messages. My goal is to empty them of their power to grind me down. Here are a few examples of the challenges that I’ve struggled with over the past few days, and the steps I’ve taken toward accepting who I am:
1. I cannot think clearly when other people are around, especially if I think that people are going to interrupt me.
It’s not just that I need time alone to write my blog posts. It’s that I need time alone to write a grocery list. I have a poor working memory and difficulty sequencing tasks. Both challenges are common and significant aspects of AS.
Regarding grocery lists, I have a strategy for making sure that each member of my family gets what he or she needs. I’ve made two very complete lists of all of our staples. One list is for my daughter’s food preferences, and the other list includes the edibles that my husband and I like to have around. I take the lists, look around the kitchen, see what we need, and write it down. Even by myself, it’s difficult not to get distracted by a hundred other things, but if someone else is in the room, it’s like running a sensory obstacle course. As Saja put it, “It’s like my head is filled with sand or buzzing flies or something, until I’m all alone, and then my thoughts can flow.”
In the past, I’ve figured that I was just plain stupid, hopelessly broken, extremely lazy, or not working hard enough on my therapy. Now, I realize that I have a Pervasive Developmental Disorder, otherwise known as a high-functioning form of autism called Asperger’s Syndrome. Doesn’t that sound ever so much better?! Don’t I feel just wonderful now?! The negative connotations of all these words send up some very uplifting and useful thoughts: Not me. I’m smart. I’m not one of those people.
Well, I reply, I am smart, and those people are my people, thank you very much. My people show care and concern when one of us feels like she’s sinking. My people use their minds to try and figure out solutions to the problems we share. My people say things so straightforwardly that it shocks the less autistically wired. My people are not broken, not crazy, not heartless, and not stupid. My people are…just like me.
So…where was I? Oh, right, the grocery list. When I was writing down the grocery list this Friday, my husband started to ask me about something. I was tempted to try and think about two things at once, because, after all, I’m smart. But I didn’t. Instead, I had the presence of mind to say, in a very straightforward and friendly voice, “I can’t answer a question and do the food list at the same time.”
Simple. No judgment. Just a statement about what’s true. And my husband’s response was, “Oh, right, I forgot.”
What a relief. The more I can articulate what’s going on in a neutral way, the better I do at accepting it as a part of me.
2. I have developed a complete aversion to sweeping the floors and cleaning the bathrooms.
I’ve been doing these tasks all my adult life, and it’s been making me progressively more irritable, grouchy, and generally unpleasant. I thought I was just lazy and immature.
I’m not. Having an AS and an SPD diagnosis, I finally understand the core of the problem. It’s called severe gravitational insecurity. That’s what my OT calls it, and she has a license and everything. The problem is that when I start to move my head through space, I can’t tell where the ground is, so I don’t have a feeling of stability. Moving my head anywhere except in a line with the rest of my body is extremely disorienting.
Sweeping means that I have to bend down to look under the bed. It entails moving furniture and bending over to see what’s behind it. Cleaning the bathroom means bending down into the tub. No wonder I get grouchy and irritable. It’s my nervous system’s way of defending itself. It’s as though my nervous system is saying, ”Um, whoa, excuse me, please don’t do that thing you do with your head in mid-air and a sponge in your hand.”
So, given that my nervous system and I are trying to be friends, I’m about to do something I said I would never do: I am going to find someone to clean my house.
Trust me, this is big. I grew up in a neighborhood in which many people hired housekeepers, and my mother was very proud of the fact that she cleaned her own house. I’ve inherited that pride, and I’ve become a reverse snob about it. But I really have to let go on this one. My husband did the cleaning on Friday, but that just can’t go on indefinitely. He’s 64 and perfectly healthy, but he’s not getting any younger, and I don’t want him shouldering all these responsibilities. Since I’m dealing with an actual, real-life disability, we need to start getting used to the idea that we need assistance. We need to start calling in support now.
3. I’m about at my wit’s end with auditory overload.
I feel so crowded and so overstimulated by sound that my nervous system is regularly going haywire. It happens everywhere outside my house, especially now that people are spending more time outdoors. And at the store, there is a music speaker directly above the jewelry case where I work. At first, I’m rockin’ to the music, but pretty soon, it’s enough to make me weep.
So, given my acceptance of the fact is that I’m autistic and that sound is really hard for me, I’m considering wearing earplugs when I’m out in the world. Yes, earplugs. This weird sister just got a little weirder. I’ll still be able to hear enough to know whether someone wants to speak to me, and if they do, I’ll take out one of the earplugs and listen. I mean, what’s worse—someone thinking I’m odd, or my head feeling like it’s going to explode? Gee, let me see…
I’ll let you know how it goes.
4. I feel really awful and very insufficient when my husband picks up the slack for me.
Luckily, I’m beginning to realize why. Read carefully, because it’s weird: I actually think, and I am not lying, that basic tasks are as difficult for him as they are for me.
Of course, they aren’t. He has his limits, but going to the grocery store and chatting it up with people is fun for him. And he likes cooking, too.
So why do I share Saja’s experience of having such a loving, sensitive, supportive husband that it makes me want to weep? It’s because I’m used to driving myself relentlessly in my quest to be “normal,” all the while denying how much work it takes to navigate through the sensory world. Over the course of my life, I haven’t been as loving, or as sensitive, or as supportive toward myself as I’d like to think.
And then, one day, out of the clear blue sky, my husband comes along and says, “I love you just as you are, and I can help you take care of things,” and it just doesn’t compute. At all. Fortunately, I’m learning that it doesn’t have to compute. I just have to stand there and accept that my husband is actually speaking the truth.
After all, as one reader said to me, neuro-typical people who love, respect, and support their Aspie spouses and children have the same difficulties with belonging as we do. Because families with autistic people are so different from what most people consider normative, our neuro-typical loved ones are left standing apart in the larger world. They support us in ways that ordinary people can’t fathom. They have patience about things that other people consider impossible—like having a spouse or a child who has meltdowns. They try to understand our challenges, they know how hard we work every day, and in the best of times, they don’t expect us to be “normal.” Lots of them don’t even think that something called “normal” exists. And so, they don’t fit squarely in the NT camp, and they don’t fit squarely in the AS camp, either.
But I always feel that they are an integral part of who we are. They’ve freely consented to come with us on this journey. They’ve thrown in their lot with us. They belong here, too.
© 2009 by Rachel Cohen-Rottenberg
13 Responses to “Toward a New Sense of Belonging, Part 5: Self-Acceptance”
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Beautiful. I love all the work you’re doing to accept yourself. It makes me realize I’ve been doing the same thing more or less without putting it into words. I found ways to advocate for myself and my needs while still trying to meet the needs of others as much as I could – but I realized I had to pay attention to my needs even if it’s not always what others want because I figure, what would they prefer, someone who asks to do a certain task in a few hours or a different day and annoys them for 5 minutes, or someone who gets so stressed at pushing herself to do X thing RIGHT NOW that she has a complete nervous breakdown or even a temporary meltdown? Taking care of your needs is not only good for you but it’s good for everyone around you, they will enjoy your company and who you are much better when you’re well rested and taken care of .
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Rachel, you write so beautifully, and once again I find myself resonating so much with your post. I’m okay with cleaning (I get dizzy on ladders, but otherwise no gravitational insecurity like you have), but your descriptions took the words out of my mouth on the other three points.
I’m still wrestling terribly with letting go of what I can’t do (after all, I’ve done it for so long, I *can* do it if I really want to, can’t I?). And the sense of relief and things falling into place that I had right after I discovered Asperger’s and realized it fit, is making way for sadness, frustration, and a different kind of feeling “broken.” Before, I just needed to figure out the perfect schedule, the perfect list, and then my disorganization would be banished. I just needed to get off my lazy butt. Now, there’s something going on that I can’t do anything about, can’t fix, can’t motivate away, can’t plan and schematize into order. That should take away my sense of guilt at sleeping in while my husband does the morning hectic-chaos routine with the kids, the self-accusation when he does the groceries, but it doesn’t. I still feel like I’m “not trying hard enough.”
Clearly, I have a ways to go….your blog is definitely a shining, welcoming light on the journey.
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Jennifer May 25th, 2009 at 5:01 am
I really love this blog entry.
You have brilliant insight and a very lucid way of describing things that I would find difficult to explain.
When I read your blog, it helps me to understand my own family a lot. I recognise all sorts of things, and it’s liberating to be able to see things as they really are.In your previous entry, I got the impression that you might feel a tad guilty for not attending your daughters school show.
The truth is that there will be people who will never understand it, but it doesn’t matter because you are being honest with yourself about what you find difficult.
The people who really count are your daughter and your husband – as long as they understand, that’s the important thing. You don’t need to account for yourself to the rest of the world.
People who really love you will have no problem with accepting an Aspie as they are.
It’s not a burden at all- not one bit. I think that Aspies have a particular intensity that some types of NT’s find great. Coupled with that sincerity; it makes for great companions and friends. It’s quality that counts, not quantity. We wouldn’t want to be without our wonderful partners/daughters/brothers/friends etc-they enrich our lives.Another thing that I find great is that you are good at finding solutions.
The cleaner for specific tasks around the house, and the ear plugs- very very good ideas!
Oh, and that time that you asked the doctors receptionist if you could wait in a quiet room (away from other people) – great idea too! Planning escape routes, working out survival strategies, working out how to organise things through making lists (like the grocery list idea)….it’s so impressive. (They’re useful strategies for NT-ers too) -
Jennifer, thank you so much for saying,
“It’s not a burden at all- not one bit. I think that Aspies have a particular intensity that some types of NT’s find great. Coupled with that sincerity; it makes for great companions and friends. It’s quality that counts, not quantity. We wouldn’t want to be without our wonderful partners/daughters/brothers/friends etc-they enrich our lives.”
My husband reassures me often with similar comments, but it really does help to hear it from someone else, too.
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Jennifer May 25th, 2009 at 4:55 pm
Saja, I meant it.
Before the teachers contacted me about my daughters, I thought that there was nothing the matter. When I first heard about Aspergers, I recognised my husband in the description (taking language literally, special interests, physical awkwardness.) He didn’t change after I had read the description, he is the same man I love, and they are the same children that I love.
My husband response when I told him that he might have Aspergers was “you’re probably right, but what difference does it make? I’m happy!”
He’s happy, despite that it’s harder for him to function and deliver under the same working conditions as others.I’m at the very beginning of our Asperger’s journey but I do feel hope. I hope that my daughters can also say that they’re happy, when they’re adults too. I’m reminded of the end of that Tony Attwood book where he gives a possible happy end to the story of the boy with Aspergers.
They call Aspergers pervasive. This means that your husband won’t be surprised that the characteristics are part of who you are. You can trust him when he tells you that it’s no burden. -
John Dale Lyons May 26th, 2009 at 4:17 am
There are many of us out there who still feel unaccepted. When you try to explain this stuff, it’s dismissed as excuses or psychobabble. I hope I can keep working until retirement, but I feel I’m regressing.And I have never had good self-eseem (some people perhaps have too much self-esteem, but not Aspies).
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Jennifer May 26th, 2009 at 5:59 am
To be honest, John, perhaps I too would have been one of those dismissers.
It’s hard for an NT to show empathy for Aspies (it sounds like I’m making a joke- but I’m being ironically serious.)
If there hadn’t been Aspies in the family, it’d be too hard for me to contemplate.Last week, I took my daughters to a theme park, and on the bus back home, the middle one had her fingers in her ears to block out the noise. I paused and listened. All I could hear was the low key murmer/homogenous hum of passenger conversations. There was nothing there that could disturb me. I asked her whether the sound of people talking bothered her (and remember there was no distinct conversation audible) and she said ‘yes.’ I told her to try to relax, and she replied that she was already trying to relax but she couldn’t because of the noise.
It’d be so hard to explain to people that the sounds of the theme park didn’t bother her, but that the background noise of a bus did. It doesn’t make sense, but I know it is so.
Perhaps it’s a matter of time, but maybe one day people will be more clued-up to Aspies.
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John Dale Lyons May 26th, 2009 at 2:42 pm
Thanks, Jeniifer.
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Rachael – beautifully written, as always. Your last paragraph warms my heart.
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Thanks for this. Awesome and spot on.
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Also, consider trying in-ear headphones rather than earplugs. Nobody needs to know you don’t have an iPod at the other end.
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Great idea!
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Taylor Selseth October 26th, 2009 at 10:51 pm
Wonderful post. Until I was diagnosed with AS when I was 15 I was constantly accused of being lazy, a liar, and/or making excuses. it left me with emotional scars that are still trying to heal. Those experiences more than anything else makes me furious whenever I hear the insensitive “you pull yourself by your bootstraps and quit making excuses for your laziness” rhetoric from close-minded people and/or those of a certain political persuasion.
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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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