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.

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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.

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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Changed utterly

Page Seventy-three

Saturday 12 December 2009

 by: mishi Posted on: 12-12-2009 @ 10:22 am…………..  Greenfield

 Questions for the solstice:

If I know a song of my cats and me wandering the canal, does the canal know a song of us?

If I know a song of my dogs and me on the riverbank and in a certain woods, do the woods and the river know a song of us?

If I know a song of a romance with the moon, a romance that went on and on with me and with cats and with dogs, does the moon now sing more sadly, now my love has been withdrawn?

If the sun in its standing still at the solstice hour in any way remembers how I honored such times, will it notice at all that my honor is put away under a shroud?

I got this question from Isak Dinesen (Karen Blixen), from Out of Africa: If I know a song of Africa, does Africa know a song of me?

Of course the answer to all of these questions, Karen’s and mine, is almost certainly: No.

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Still Homeless

by: mishi

Posted on: 11-04-2008 @ 10:33 am  ~~  website

 

 

tuesday 4 nov 2008          Peskeomskut Park, Turners Falls

In 7 days it will be eight months of homelessness (courtesy of the DMH), and of all the cloak-and-dagger stuff that Matthew says has gone along with the homelessness. I haven’t been a human being to anyone for quite a long time now.Update 27 August 2009:  Matthew was the one who first told me about the protection, the federal dimension, and people wanting to kill me. I didn’t myself think the FBI would be involved unless we were dealing with organized crime. Certainly cars came to visit the lunatic criminal who lived in my building that I described as “mafia cars” before I was even evicted or ever knew Matthew. But the number of protectors I had and how it worked and when it would be over were details Matthew never gave me. I was living in a park right in the center of Turners Falls. What kind of protection is that? I was still waiting for these protectors to choose me an address, because that was all I ever knew about federal protection: you couldn’t choose your own place to live. I keep repeating this everywhere, because I keep getting asked the moronic question: why weren’t you looking for your own place. I’ve already given my answer to these fools repeatedly.

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why not for us?

Wednesday 2 June 2010                 Turners tarting

Again I’ll break in on my copying of the original Mishi posts to write a new one, starting off with material quoted from Michael John Carley’s book Asperger’s from the Inside Out:

      “Because we are different from the rest of the world, often it takes, not concessions, but a different mind-set in our potential significant others to be able to see past our differences and find qualities they like. Holliday Willey again provides another beautiful example in Pretending to be Normal as she recalls someone she once knew:

                        ‘To him I was a friend he liked to do things with, someone
                         to share life with for a while. He never batted an eye when
                         he saw I lived with two dogs and five cats, instead of a bunch
                         of girls. He never expressed any concern over my weird habit
                         of grilling people for way too much information. He always stood
                         by me patiently when I freaked out from having had too much
                         sensory stimulation. He never questioned me or criticized me,
                         he just let me be. If only everyone could be that gracious —
                         maybe then, we would not even need a definition of Asperger’s
                         Syndrome.’ “

 

And I myself had a male friend like that for a number of years in my life. Not a romance, but we were good friends. Sadly, our families and our lives went in different directions, and we lost track of each other. But after 34 years, his sister has found me again, and we are in touch. I hope he’ll hear through her how good his friendship was.

Carley is discussing these issues in his chapter that deals with Aspies dating and forming couples, but I will apply the material above to all relationships. Why is there so little tolerance of our differences for so many of us with Asperger’s? Why is it like trying to find a needle in a haystack to find friends/partners who will accept the way autism makes us different? I suppose I already know the answers: people are selfish; people want sameness and conformity; what’s different is regarded with suspicion, et cetera. Narrow mindedness, shallow thinking, emotional laziness that doesn’t want to make the effort, intellectual laziness that doesn’t want to learn about the condition.

I want the right not to smile without being disliked for it, lectured about it. And the right not to look people in the eye when I’m not up to it. I’m tired of my autism symptoms making me a bad person in shallow minds: the absence of a smile is malicious. The absence of eye contact means I’m lying. The need for truth and for direct speech is nit-picking. Extreme attention to detail is nit-picking too.

Many people who will go to the trouble to understand diabetes or blindness or the needs of an amputee will not exert themselves one iota to understand mild autism, autism not severe enough to land us in special homes, but still enough to make us “weird” and very much not average.

part of the book Neverending Solitaire

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

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Noli Me Tangere

Page Nine

by: mishiPosted on: 05-30-2008 @ 09:59 am

 

 

May 29, 2008    Greenfield     Smackerlacker, who left a comment on my last entry, thanks for your response. If you have a blog of your own I can go to, I couldn’t find it.Someone else responded to my last entry too. Coincidentally enough, he shares both a name and an occupation with one of the DMH workers who destroyed my life. I wrote back to him. Whoever he is, he’s trying to play my buddy, my cheerleader, for some irrational reason. I told him I despise him, just in case he’s the one I know. If he wants to keep writing to someone who despises him, then he has even more psych issues than I thought.

As always, my time is too short with the computer. A few words from wise people:

“the unexamined life is not worth living”

Either Socrates or Aristotle, can’t recall which. So how many people do you know, my fellow oddies, who really examine their lives and conduct and motivations on a regular basis? Jung tells us we need to integrate our conscious and sub-conscious minds, but how can that happen without reflection and examination?

“Human beings are a lot meaner and stupider than they think they are.

Kurt Vonnegut. I think we oddies know better than anyone how mean and stupid the NT’s can be, but they themselves have no idea of it.

Update 4 August 2009: It’s a long time since I first wrote this post, but I stand by my quote from Kurt now and always: Human beings are a lot meaner and stupider than they think they are. If I ever have an apartment again, I’m going to draw a big sign with those words and hang it in a prominent place.

 (the sculpture, in its entirety, is available from www.toscano.com)

 

           

 

 

 

Comment By: Wimbledonski(Posted on 06-15-2008 @ 04:36 am)
Comment: I agree 1One Hundred 0/0Percent that neurotypicals are plain normal LIKE PLAIN FLOUR; not spceials, unlike Ourself’s FULLSTOP.[ Delete this Comment ]

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hodor

Page Three….      mishi  Posted on: 05-05-2008 @ 10:15 am

                                                                                                  

“nature has planted in our minds an insatiable longing to see the truth.” ~~~  ~~~  cicero

well, my mind has that longing in any case, but I don’t happen to see it in most of the minds I meet.

It keeps going…

mon 5 may 2008…    greenfield  thank you, Hodor, for your kind message. it’s only the second cyberspace message I’ve received.

I have never, ever lost the feeling that I am on the wrong planet, and I’m in my fifties. in fact, in the last ten years or so, that feeling has  become even stronger.The Department of Mental Health in greenfield, mass destroyed my life, my whole sense of identity and purpose, and sent my “mental health”, which they were supposed to help, presumably, into the worst condition it has ever been in.

they don’t believe that death from grief is possible, death from too much trauma. they only believe in death from pills and razor blades. they cannot think outside of the prosaic and ridiculous boxes taught to them in their psych courses.

I don’t understand the human code of communication and conduct, or I only understand it so far. animals I understand a great deal more. and they understand me. other humans seem to find me just as bizarre as I find them. I’m tired, depressed, sad, less interested in one breath in, one breath out than I’ve ever been in my life.
the ones I love, who loved me, are gone.

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see the DMH page of my website outline

wed 21 jan 2009, northampton —- what I was hoping for back in may last year, in the early days of blogging, was that people, even just a few, would take an interest. an activist lawyer or journalist turning up would have been ideal, but barring that, even just a couple of regular people who read about the destruction of my life by a juggernaut of an agency and empathized with the situation, felt the same hurt and outrage, would have been a great comfort. especially here, on wrongplanet, where other people with asperger’s would read what had been done to me….. but now it’s ten months, ten days that I’m homeless. now I also know the things about my life that matthew lacoy told me abin july 2008: organized crime trouble and federal protection. and if you don’t believe that, then you are just as dumb as I was not so long ago about the ways in which innocent people can get snared in a mob-world hornet’s nest.

july 2009, turners falls: still trying to fight the delusional label. I suppose I’ll be trying to fight it to my last breath. I didn’t dream up or hallucinate or hear body-less voices to get the thoughts I got about being in protected by one set of thugs on the government payroll from another set of thugs who are not. these things were told to me by a flesh-and-blood human being who is still in greenfield, where he’s been for years. there are no delusions involved. what did happen is that the trauma that had already just happened in my life last year combined with this new information from this man to keep me in a constant state of anxiety and anger, and in this state I pulled many more people and events into my protection situation than probably belonged there.

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read…    Spite and Malice…   The pygmies keep dancing

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all photos, graphics, poems and text copyright 2008-2013 by anne nakis, unless otherwise stated. all rights reserved.

 

 

asperger’s; first wrongplanet post

Page Two

   “beyond myself somewhere, I wait for my arrival.”  ~~~ octavio paz

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friday 2 may 2008    greenfield                                                                    

when I copied today, I goofed up. I’m tired. put the second wrongplanet post as page one and now the first as page two. 

this is my first entry on this new blog on wrongplanet. I haven’t been diagnosed with Asperger’s, but I think the chances are good that I have it. I’ve just been drastically traumatized by the Massachusetts Department of Mental Health, the people who were supposed to help me. I’d like to see if anything similar has happened to any of you in the mental health care system, and to connect with people who might be more like me than anyone in my life has ever been. the name of this website (wrongplanet, the original site of this blog) has a lot of meaning for me, as I suppose it does to many of you. sometime in my teens I began feeling as though I’d been born on a different planet from everyone else and somehow got dumped here. I’d always felt that way, since early childhood, but I didn’t use the planet analogy until I was in my teens.

I realize this might sound very unlikely, all this garbage with the DMH,  but it’s all too grimly true: the DMH allowed my life to be destroyed. though I’ve been traumatized and depressed many times in my life, this is the worst ever.

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the Asperger’s page of my website outline

read…    Neverending solitaire…    Mental hell

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all photos, graphics, poems and text copyright 2008-2013 by anne nakis, unless otherwise stated. all rights reserved.