https://mishibone.wordpress.com/2011/08/22/loquacious/

https://mishibone.wordpress.com/2011/08/22/loquacious/.

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atypical: life with asperger’s in 20 + one third chapters

Friday 29 June 2012

the title of a book by jesse a. saperstein, published by perigee. in many ways this is the best Asperger’s book I’ve read thus far.

But before the praise, I have to say that I have a big bone to pick with Jesse. Over and over in his book, he implores the neurotypical world to take the radical step of giving us Aspies a chance. And yet… I’ve sent at least three messages to him on facebook, and he hasn’t answered a single one. Can’t he give me a chance? It’s true that I may not be sending the messages correctly. I have a terrible time navigating 0n facebook. So maybe he’s not ignoring me. But if you are, Jesse, why?

Jesse has many of the obvious, and to many people obnoxious, Asperger’s tics that I myself do not have, and which have made social interactions even more arduous for him than they are for me… and that’s already bad enough. And yet he has also had the good f0rtune, like Grandin and Robison and the others, to have his writing published. No such good fortune has shown up for me or for many other Aspies who are writing. Jesse also has been extremely lucky in his parents, which many of us are not, and he knows this very well. He mentions it many times.

I like this book so much because it talks about rage, and about repeated failures, and about how these things make one feel. He discusses the desperation we Aspies have to be given a chance. He is funny, but also honest. He is positive, but also bitter. He discusses the whole range of emotions that Asperger’s and its consequences have engendered in him. He does not gild the lily. Or at least not very much.

Once again, there are so many great lines I could pull out this book that I’d be hauled to the rack for gross plagiarism. Just read it.

Most of my life has entailed “pushing against a force,” with perpetually frustrating outcomes.

The journey has forced me into quagmires of chronic failure and bitterness that have lasted up to years at a time.

When you have met one person with autism… you have met one person with autism.

Rejection is still unbearable as an adult, and I have never stopped asking the same questions. “What did I do?”

When people fail to understand why someone is different, they will often deny him or her the “radical” courtesy of  a chance.

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read…   Neverending solitaire

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all photos, graphics, poems and text copyright 2010-2012 by anne nakis, unless otherwise stated. all rights reserved.

asperger syndrome — a love story

wednesday 27 june 2010

this is the title of a really good book by sarah hendrickx and keith newton (british couple, book published by jessica kingsley publishers)

Though I was not involved in a romantic relationship when I bought and read this book, I found it more helpful in understanding differences between autistics and NT’s than any book I’ve read to date. There are many, many excellent, informative quotes that I’ve highlighted in my copy, but if I gave them to you here I might get accused of stealing half the book. I strongly recommend that interested people actually read this book.

I was continually struck — and pleased — by Sarah’s willingness to make certain allowances for Keith’s autism, and her final decision that it is both useless and unfair to try to turn him into a neurotypical. This awakening came only after much struggle, but I applaud her for finally reaching it. No one at all in my amerikan life has come to such an awakening regarding me, and I envy Keith his good luck in finding her.

Keith also has made compromises that earlier he could not have made. But the more Sarah accepts him as he is, the more willing he becomes to try some small, cautious ways of adjusting some of  his autistic reactions. Kindness breeds kindness, back and forth between two people. Isn’t that something we’re always told? But how often do we practice it, or find it being practiced on ourselves.

Here are some of the multitude of quotes I cling to in this extremely enlightening book:

(sarah) No two people with AS will display the diagnostic characteristics in the same way or the same degree, due to differences in the condition and also in personality, background and many other factors.

(keith) I couldn’t tolerate the process of looking after myself…  I pretty much shut myself off from the world for about seven years.

(sarah) … some people with AS… simply tell the truth and have no concept of whether it is appropriate or helpful to do so. The truth is all and no one can possibly have any issue with it, as it is an inescapable thing.

(keith) Looking people in the eyes hurts. … I just wish for some simplicity in communication… Frankly, I have no friends… anyway, don’t they just disappoint you and let you down?

(sarah) He views much social conversation or small talk as shallow and pointless…

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read…  Lifelines…    Stolen stars

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all photos, graphics, poems and text copyright 2010-2012 by anne nakis, unless otherwise stated. all rights reserved.

born on a blue day

tuesday 29 may 2012

The title of Daniel Tammet’s famous book, which I’ve recently read for the first time. Daniel not only has Asperger’s, but he is also a mathematical savant. And he is a synesthesiac. This is quite a load of special endowments to land all in one individual. I envy him the synesthesia, to be honest, which I myself only have in an extremely inferior degree. I’m afraid I don’t envy him his mathematical genius, because I’m one of those rather infrequent Aspies who gets both a headache and a stomachache thinking about math. I am an Aspie of the word, and the musical note, and the visual image. But you can keep most types of numbers as far away from me as possible.

While I found the stories of Daniel’s astounding abilities fascinating, as almost anyone would, I found his writing style to be one I’ve seen in many other Aspies: somewhat rigid and step-by-step, and not very good at holding my attention, even when the subject matter is highly interesting. That made it a challenge to actually finish the book, because a writing style that leaves me flat — whether done by an Aspie or an NT — is a thing that will very often make me put down a book and never pick it up again.

Literary criticism notwithstanding, certainly everyone with Asperger’s should read this book. And every savant. And every genius of any kind. Learning how the various types of human brains work presents twists and turns and amazement of all kinds.

Daniel says any number of things that resound loudly inside my Asperger’s self, and perhaps in yours too. Here are a few of them:

 

“Predictability was important to me, a way of feeling in control in a given situation, a way of keeping feelings of anxiety at bay…”

 

“I have always loved animals, from my childhood fascination with ladybirds to avidly watching wildlife programs on television. I think one reason is that animals are often more patient and accepting than many people are.”

 

“… depression… is a common issue for individuals on the autism spectrum.” (referring to his brother, who has Asperger’s and serious depression as well)

 

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read…   Mental hell…  Spite and malice

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all photos, graphics, poems and text copyright 2010-2012 by anne nakis, unless otherwise stated. all rights reserved.

be different

tuesday 8 may 2012

Be Different is the title of John Elder Robison’s latest book. I haven’t read it, though I’ve read his first book (Look Me In the Eye), all of his brother’s (augusten burroughs’) books, and have just finished his mother’s (margaret robison’s) book, The Long Journey Home. I also have a book of her poetry. This family spent a good chunk of time living in western mass, where I live. There’s depression in this family, and anxiety, so I have an interest. There’s Asperger’s in this family too, so I have an interest. And like mother Margaret, I too am an artist and poet, so I have interest.

But I can’t read John Elder’s latest book. It’s the title that’s barring the way. There are indeed Aspies out there whose lives have gone the way John’s has (from what I know of it, which isn’t vast knowledge to be sure). While very young he was lucky enough to know people who knew people in KISS, and so he found a great niche there designing special effects and sound systems. Tinkering with machinery is one of John’s Aspie perseverations (most Aspies have them), and by all reports, he is a whiz at such things. He was able to start his own auto repair business. He is, as far as I know, currently married to his second wife, which means he found at least two women in this world who could love him and make efforts to understand/live with his Aspie differences. For him, and for some other Aspies, being different has paid off.

Then there are the others, and I know full well that I’m not the only one. Those for whom being different has only brought repeated failure, repeated bullying of a dizzying variety of methods, repeated doomed attempts to find a human being who can give love, who will stay, who will learn about the condition. There are Aspie success stories, and there are Aspie non-success stories. In this blog and in my book (www.autisism.wordpress.com), I’m here to write one of the bleak, non-cheerleading stories, hoping that in at least some very limited way, I speak for other Aspies for whom being different has not paid off.

So the title bars the way. I fear a book of excessive optimism, a book of happy phrases telling us how great it is to be autistic, what great things we can do, what great, understanding neurotypicals we can find. My fifty-odd years of living have not borne out all this greatness, and I constantly find other Aspies online whose lives have also not borne this out, this laudable, promise-laden state of being different. For those Aspies (Temple Grandin, Jesse Saperstein, John Michael Carley, and many more) who have been able to find the niches and the people in whose safety they could shine, and do shine, optimism I’m sure makes total sense. But from where I happen to sit at age 50+, and from places where other Aspies of varying ages sit, optimism comes very close to being denial.

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read…  Neverending solitaire    
       Scealta liatha… 
 

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all photos, graphics poems and text copyright 2010-2012 by anne nakis, unless otherwise stated. all rights reserved.
 

aspie strokes

saturday 30 july 2011

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read…  Neverending solitaire    
       Scealta liatha 
 

     

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within the autos, I

saturday 7 may 2011

In whatever writing I have done online since 2008 concerning my own particular experience on the autism spectrum, I have remained largely on the surface of the thing. I’ve said I don’t smile much compared to most people, and this creates in others an immediate negative: the failure to smile is a negative thing. I’ve said I rock back and forth in anxiety, and this again sets up an instant negative response: rocking back and forth is childish, and weird. If you’re that anxious, have a couple beers, or run around the block, or do anything that we consider normal anxiety relief. I don’t like looking at the human face, for the most part. I do it, but it jangles the nerves. In most cases I don’t find the human face interesting, but rather a shifty, dangerous thing. And these are all important signifiers of a supra-normal (as I choose to call it) neurobiology, but they do not approach what it feels like to need desperately to live in the αυτος, the self. And I feel very strongly that those of us who are on the spectrum and are prone to write, should make every effort to describe as accurrately as we can the experience of being autistic, in the hopes of engendering some real understanding in the minds of neurotypical people.

But I have very little confidence in my own ability to do this effectively. I feel as though there must be other autisitcs who can fulfill this assignment much, much better than I could. And yet for months I’ve been nudging myself to try, and no doubt to produce an inadequate result, and having tried, will discover that no one is interested anyway.

Knowing all that, I still feel obligated to try. Autism is slightly different in each person who has it, so my autism isn’t exactly like anyone else’s. I can only make the best report, the best description I can. No doubt I won’t even get other autistics to come here and read it, much less any neurotypicals. This foreknowledge of futility makes the task even harder to get started on.

I try.                                     

I’m a little kid, three years old. On my bedroom floor coloring. For me the absorption in the picture and the colors I am putting on it are, for the moment, the entire universe. I am totally focussed on and interested in the colors and how they are going to go. Nothing else matters. Enter one of my parents through the door, talking about it’s time for supper or time to go out shopping. Yes, sometimes the parents come to the door bitching about something, but it doesn’t even have to be bitching to totally set me off. Some autistics act out when they are set off, others don’t. I mostly don’t. I get up and leave my colors and my pictures. I get up and leave the universe. But there are internal reactions to this interference from the outside. I am angry that I’ve been taken away from the sheer absorption of color by human voices, and therefore there is yet another reinforcement for my child’s Asperger’s mind that human voices are irriating things. They take me from absorption, they take me from beauty, they tear apart a sphere of bliss I was busy in, and wasn’t ready to leave yet.

Or, still three years old, I am just sitting somewhere, living my newly-devised life in my head. A parallel world I have learned to make for myself, where everything is safe. I make up people for my alternate life, adults and children, and I make up situations. And in every situation, I make the people behave in a way that I understand, that I don’t find confusing, and in that life where I understand, I am safe. I make up sad events and funny ones and all kinds of things to happen in this world I understand. I’m enjoying myself there, I’m energized by this world I understand. And then, again, comes a human voice. And though I usually show no signs, inside me it feels like a tearing, a great ripping, as if pieces of me were being rent from each other when I have to obey the human voices and leave my inner world where all is clear to me. In my teenage years, when I came upon T.S. Eliot’s poem with the line: till human voices wake us, and we drown, I found a line that runs through my head so very many times when a human voice tears me out of my world of the autos, where I am at home, into the sea of society that irritates and hurts and confuses me, and I drown.

There are physical reactions to this tearing, as well as emotional ones. Along with the anger and resentment can come a lurching stomach; or pins and needles in the skin; or a sudden, brief, all-over shudder; or pain inside the ears. Pounding heart, brief chest pain. And so on. Physical responses to being torn from one’s inner world.

Added to the distresses occasioned by Asperger’s, I had a whole other set that were brought about by my serious physical illness in childhood. More human voices piercing into my inner world with do’ s and don’ts and drugs and the words: she’s going to die. All of this resentment of the medical voices fused with the resentment of the ordinary voices that tore me out of my world, so that by the age of three I already regarded smiling as highly suspect and tricky; human voices as scratchy, grating and determined to snatch me from beauty and safety and pleasurable absorption. By the age of three, the human species was already mistrusted, dismissed as mostly unbeautiful and mostly unpeaceful, and impossible to decipher. Why didn’t they understand the way color can completely mesmerize you? Why didn’t they know that I had to stare at the lines of sunlight coming through the window because it was so beautiful that sunlightcould do this, and why weren’t the others completely engaged by those lines too? Why were they too dense to be fascinated by these things?

Most children can get very absorbed in play, but I could get intensely absorbed in almost anything. In watching my parents scream at each other, for example:  the redness in the face, the fire in the eyes, the tension in the muscles, the increasing volume of the voices. This made me nervous, of course, but it also fascinated me from a purely physical point of view to see that the skin and voice and eyes of the angry human could produce all these strange changes.

In light of the anomalous immune system that created so much severe illness, and the autistic neurobiology, and the non-average high IQ, what chance did I ever have to be average, or to be of any interest or value at all to average people? What chance did I have to be other than at some level a crashing weirdo, and more often than not, a burden to the average? I look back over many, many years, and still believe my chances of being anything like average and likable and acceptable and lovable were already, by the age of three, slim and none. No one knew I had Asperger’s, except me (and I certainly didn’t know what it was called, or that other people had it too), and even if they had, in the years that I happened to be growing up, not much of anyone would have tried to understand or accomodate it.

Has it been this way for scores of Aspie children, especially those of my generation?

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read…   Neverending solitaire

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high-functioning adults with asperger’s

Wednesday 9 February 2011

Sunday I came across a reference to an article discussing the fact that “high-functioning adults with Asperger’s may not understand other people’s intentions.” I didn’t go and read the article itself, as I had other things to do. But boy oh boy, what an understatement: May not understand other people’s intentions. For myself, I would have to revise the sentence to read: rarely understand people’s conscious intentions. Because for myself, I don’t have nearly as much trouble with people’s unconscious intentions. The anger that they’re trying to hide, but you can feel it. Or the jealousy. Or the desire to use you, or whatever else. These subconscious, or conscious-but-I’m-tyring-to-hide-it-from-you, ulterior issues are often easier for me to grasp than the person’s planned intent.

What is their intent? What are their words that they just uttered trying to elicit from me? What is that particular sort of smile intended to make me feel? What does pretending to be fond of me when they really are not do for them, and what is it supposed to do for or to me?  What do they mean? What do they intend? What is their agenda?  Because if there is one thing I’ve finally figured out  — and it took me decades — it’s that non-autisitic people do, in fact, always have an agenda. Every word, every facial expression, every tone of voice is either consciously or unconsciously designed to produce a certain effect in and get a certain response from the person they’re performing for. Neurotypicals are always performing, and trying to manage others, and trying to manipulate others.

And while I can’t speak for any other high-functioning adult with Asperger’s, I can say that for me non-autisitc people’s intentions are a nearly incomprehensible minefield, a constant source of anxiety, a constant source of hurt, a stomach-sickening ordeal that I don’t get free of until I’m dead, apparently.

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(part of the book Neverending Solitaire)

all photos, graphics, poems and text copyright 2008-2011 by anne nakis, unless otherwise stated. all rights reserved.

 

living on threads

 by: mishiPosted on: 02-18-2010 @ 01:19 pm(with this post, the copying of the original Mishi blog from Wrongplanet is FINI! Only new posts from today, being 6 dec 2010. the date above is the original wrongplanet publication date.)

 

 

18 Feb 2010…..   Turners Fails —- This may well be the last post I ever write here on Wrongplanet. Though maybe I’ll come here very rarely and write something. Most of all the online writing I’ve been doing for nearly two years is being moved to WordPress. You can make a blog-based website there, and that’s what I’ve been working at since Jan 21. It’s a big job. Two years’ worth of writing that has to be moved around and knitted together with a seemingly endless gang of links.And that’s my existence; that’s all there is for meaning and purpose in my days now. One little guinea pig and one huge website. It isn’t nearly enough. For 55 years I had families of animals. More than one animal and more than one kind. And the more fool I that I didn’t realize the full extent of the meaning and purpose taking care of them gave to my life until it was all stolen by unprincipled, bulllying, neurotypical human beings.  One guinea pig isn’t a family, and that’s not her fault. And a website full of writng about what was done to us, and by whom, and all the ways in which this human cruelty has changed and broken me… well, it may be a good thing, I don’t really know. But as a meaning and a purpose to living, it’s flimsy in the extreme when you compare it to a lifetime of loving and caring for and being loved by a family of breathing creatures, of full and generous spirits.

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the printed page

 

Saturday 16 January 2010…     Greenfield  by: mishi

Posted on: 01-16-2010 @ 09:57 am

 

 

I’m re-reading Donna Williams’ Nobody Nowhere. There was so much in that book that was true for me too, both as a child and as an adult. I need to review that information. ….. And now much later the update that I wasn’t able to redad her book through a     second time. By January of this year, reading books without animals around me became impossible. I’m only able to listen to audiobooks, and only certain ones. If Donna’s book were available that way, I would certainly listen. I found a great deal of myself — my reactions and perceptions — in that book.

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(clip art photo)

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