this is a title

21 august 2015

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there’s an impediment, a barrier, but I don’t know what it’s made of. is it made only of my asperger’s?

I see you, hear you, but don’t comprehend. I talk about a lot of different things, have lots of interests, but am of no interest. I wander through you, right through you, but am invisible. I speak out, speak up, but it’s as if I never spoke at all. deaf to me, blind to me, unrelenting blocks of ice to me. you have eyes and ears and room for so many who are so little or so warped, but for me only the impediment.

what is anyone’s definition of unkindness, or cruelty, or damage? what is your definition? what is anyone’s definition of conscience, and does anyone have one, a conscience or a definition?

I can’t be like you. can’t smile as much as you, can’t deny the dark, sharp quills that people wear on their backs and wield at the blink of an eye, can’t see things through your rosy glasses, can only be my best one on one. even so, is there nothing? nothing at all of interest, or of value, that seeps through the barrier?

why is it so easy to be ice. doesn’t it ever enter your mind what’s happening, what’s at stake. I suppose it enters but doesn’t matter. what’s at stake doesn’t matter.

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read…  Lifelines…    Stolen stars

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all photos, graphics, poems and text copyright 2010-2015 by anne nakis, unless otherwise stated. all rights reserved.

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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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applying ourselves

thursday 29 december 2011

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Heard yet another provocative radio story this morning. Provocative to me, at least. And I heard it twice. It was a story from our region, from western Mass. Some reporter or writer or whatever (I didn’t care about her enough to pay attention to her name or profession) went to Wrongplanet.net to find two Aspergians who were in a romantic relationship together. Such a couple was found right here in Amherst and Greenfield. This reporter or whatever was interested in seeing how two Aspies navigated the perils of romance.

So she finds these two people and in October she starts spending time observing them and talking to them. When she was describing certain tendencies that many people with Asperger’s exhibit, she pulled out the psychobabble-bonehead terminology and started my blood to boil, as so often happens when someone (unjustly, not very logically, in my opinion) plays the PBB card.

We Aspies, many of us, have the ability (for such I choose to call it) to focus intensely when something stirs our intellect, or our imagination, or our emotions (yes, many Aspies do indeed have emotions). If we suddenly  take an interest in Swahili, then we will study Swahili with great focus and to the exclusion of other pursuits until we’ve learned what we want to learn.  Or if we’re working on a painting, we may not sleep or eat much until it’s done. And so on. These are just two examples. And if we are the emotional type of Aspie, then our emotions are just as concentrated and focused as our interests. Enter the psychobabble.

The female half of this Aspie couple happens to be one of the emotional variety, and when she is sad, she is very focused on that sadness, on every nuance of how it feels and how it manifests itself and what brought it about. I call this attention to detail, both internal and external. I call it feeling one’s emotion with presence of mind, rather than simply stuffing emotions down and pretending they’re not there.

But the psychiatric community has named this kind of intense focus that Aspies (and even some neurotypicals) can level on a task or an interest or an emotion, perseveration. They have taken the word persevere, which in general has a very positive connotation and is considered a good thing, and have butchered it into this new frankenstein: perseveration. A bad thing. Too much. Too much focus, too much attention to detail. A disorder. Not the variety of the human personality, but yet another freaking, stinking disorder.

I obviously disagree. Strenuously. Both as a human being with a quite good brain who happens to be very emotional,  and as an Aspergian, I will rail against psychobabble that is not useful, that is even harmful, that turns the variety of human personality into an encyclopedia of disorders, until I am either dead or in coma.

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read…   Braon...   Braonwandering

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the loquacious brain

monday 22 august 2011

I recently read the book (something I can seldom do anymore) Shadows Bright As Glass by Amy Ellis Nutt. It details the brain injury and aftermath of a man named John Sarkin. It’s a book that’s jammed full of fascinating information about the brain in general and this man’s experiences in particular. I have used one of Ms. Nutt’s chapter titles for the title of this post. And I’ve done this because I myself have one of those very loquacious brains, and have known others with them too.

Among many other things that happened to Sarkin was this: after his brain damage was finished happening, and it was a process, he had an absolutely compulsive need to write and paint and draw. This stays with him still, as far as I know. He really can’t do much of anything else. He writes and paints and draws wherever he is, with whatever materials happen to be lying around. He cannot stop.

One of the specialists whom Ms. Nutt quotes in the book is Alice Flaherty, a neurologist at Harvard, and one who worked with John Sarkin. Here are some samples, all taken from the book.

1.  “In many ways, Flaherty said, Sarkin was a classic case of Waxman-Geschwind syndrome, a personality disorder characterized by excessive verbal output, an intensified mental life, and an obsessive preoccupation with detail.”

2.  “Psychologists have retrospectively identified hypergraphic writers, painters, and scientists, including Fyodor Dostoyevsky, Vincent van Gogh, Agatha Christie and Stephen King.”

3.   Flaherty believes it is the limbic system, the seat of our emotions and our most primitive drives, that kicks creativity into hyperdrive in those artists, writers and thinkers who exhibit hypergraphia, and it is suffering and pain that pricks the limbic system into life (italics mine). “…..   “Some scientists, in fact, believe that the act of compulsive writing and art may be an attempt to understand or manage the deep complexity of existence.”

I’m not saying that I disagree with any of Ms. Flaherty’s insights, which I happen to think are very keen. What eternally bothers me about psychiatrists and some neurologists is that every single bloody thing in this world that does not  conform to an arbitrary definition of “normal” (who the hell made that definition anyway? freud? jung? who?) has got to have some loopy label put on it and be classified as either a syndrome or a disorder. If you wash your hands more than somebody or other wants you to, you’re obsessive-compulsive. If you have trouble with small spaces, you’re claustrophobic. Whatever happened to things being just part of the huge variations in human personality? Where did that go? It used to be: Joanie always likes to have clean hands. Walter doesn’t do well with heights. Mary gets her really down periods. Mike is a good guy, but he’s got a hell of a temper. The wide range of possibilities in human personality. Not anymore. Joanie is OC, Walter is acrophobic, Mary is depressive, Mike needs to go to anger management classes. Why isn’t it that just the most extreme examples (like poor Sarkin) get the labels thrown onto them, and the rest just be the way we human beings can be.

Certainly in John Sarkin’s case, his need to create is very extreme, and maybe because of that it deserves labels and syndromes. And then I look at myself. Since the horrifically traumatic events that occurred in my life in 2008, I’ve been writing much, much more than I ever wrote before. Do I have hypergraphia, according to the psychobabbles? Do I have Waxman-Geschwind syndrome? If any psychobabbles would show up here and leave me a comment: yes, anne, you have one or both of those disorders, I might just answer them this way: So what. Who does it hurt that I write a whole lot? I’m doing the best Ican after a fatal blow to my psyche, after everyone I love was stolen and killed, after the worst trauma of my trauma-filled life. I’m not able to kill myself for some reason, so I write. I have no family to take care of anymore, so I write. Just as John Sarkin is doing the best he can after devastating injuries to his brain, I and many others are doing the best we can after equally severe injuries to our psyches. Leave us alone to get on with it.

I myself have always had an extremely loquacious brain, and I’ve known a few others who were that way too. I’ve always had a need for stimulating conversation, reading, writing, drawing, music, making things. The writing and conversation parts have become many times stronger since the events of 2008. So what. I have no one to talk to most of the time, no one to have stimulating conversations with, so I write even more. My brain has a huge need to communicate, in one way or another, and so does John Sarkin’s now. Maybe one of you reading is like that too. Why do we have to have so many labels slapped on so many things. This is the infinite variety of human brains, and human personality. If you paint pictures all day long, so be it. I bless you in your painting. You’re not hurting anyone, as far as I know. Maybe people like us are simply trying to “manage the deep complexity of existence,” and the deep complexity of the pain we’re in.

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read…  Lifelines…    Stolen stars

 

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aspie strokes

saturday 30 july 2011

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read…  Neverending solitaire    
       Scealta liatha 
 

     

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