When I realized I must have Asperger’s back in 2005, I read one of Temple Grandin’s books, though which one it was has now flown from the memory banks. Because of other things going on in those days, I wasn’t able to do further reading of books by the autistic until 2008, when I was diagnosed.
Since then there have been others. All of these people have Asperger’s, with the exception of Donna Williams, who has a more severe place on the autism spectrum. Here they are, so far:Nobody Nowhere… donna williams Look Me In the Eye… john elder robison Asperger Syndrome, A Love Story… sarah hendrickx and… Asperger’s From the Inside Out… john michael carley Born on a Blue Day… daniel tammet Atypical… jesse saperstein
I write about my reactions to each individual book on my asperger’s blog (www.mishibone.wordpress.com), whereas this page in this book deals with reactions to all the books in general, to the up and the down for me of reading books by other autistic people.
On the one hand, it is a validating exercise to read such books. To see some of my own symptoms and reactions and thought processes jumping out from the pages of these books, to say over and over again: Yes! Yes, that’s exactly the way it is. To think: I’m not the only one in the world, a one-of-a-kind mutant. These books feel like company in my cavern of isolation, almost like sitting and talking with another Aspie (almost, but not quite).
But then there is always that other hand. The hand that says: these people’s books about autism have been published, and mine will never be. These people have received recognition and praise for their various achievements, whereas most of us on the autism spectrum rarely get anything like praise and recognition. Most of these people have been able to support themselves financially, to find spouses if they wanted them, to find one or two niches in the neurotypical world where they could succeed. Most of us, from what I learn when I read Aspie blogs, will never find such things.
I find the other Aspies, the ones like me. I find them when I wander around online, on other websites that I join. I find the Aspies who cannot support themselves, who have no life partner, who receive praise and/or validation about once in a blue moon, who live daily with loneliness, rejection, and despair. I find them. I’m not the only one, not a one-of-a-kind mutant. Unfortunately, I haven’t found one close at hand, here in my community. An Aspie who is an Aspie, but with no psychoses or substance abuse or other aberrations to go along with the autism. An Aspie whose writing is not published and who is not married and who experiences rejection (if not also ridicule) on almost a daily basis. I haven’t found one near enough to be a companion, a friend, a fellow-traveler through the neurotypical meanness of the town in which I live, the darkness of the life in which I live.
all photos, graphics, poems and text copyright 2011-2012 by anne nakis, unless otherwise stated. all rights reserved.
This is something I’ve been chewing for many months: how narcissism and autism come to meet. Because “narcissistic” is one of the traits that the psychobabble-boneheads have turned into something repellant, a disorder, any autistic reading this might immediately get big on the defensive and silently scream at me not to go calling them a narcissist. I believe that the psychobabbles have recently removed narcissism from the DSM (their twisted book of mental diseases), but it’s way too late. They already made “narcissist” (and a lot of other human traits too) a dirty word a long time ago.
So, to any autistic readers who are now screaming at me, please calm down. Know first that I’m not only calling you narcissists, I’m calling myself one too. Because if a person has any degree of autism, a condition in which the neurobiological map inclines the person to a lesser degree of interest in other people and their activities, and to a greater degree of interest in one’s own inner life, how can some level of narcissism, of extra interest in the self (autos), not be present? I go over it and over it, and can never find a logical way out of the conclusion that if one is to some degree autistic, then one is also, ipso facto, to some degree narcissistic.
In reaching this conclusion, I class all autistics as narcissists, including myself. But unlike many others in this world who swallow whatever the psychobabbles hand down without question, I decided years ago, even before I ever heard of Asperger’s or knew that I have it, that narcissism is not a mental illness, but one of many, many possible human personality traits. And a relatively harmless personality trait, to my mind. So let’s not beat ourselves up for being autistic and narcissistic, and let’s try not to let anyone else beat us up for it either. Haven’t we all known plenty of non-autistic people who were dedicated narcissists too? It’s not a trait that shows up only in autistics, but I do think that you can’t be autistic without it.
I don’t have scientific studies for this opinion of mine. It’s simply a conclusion I can’t avoid when I add what I know about the workings of narcissism to what I know about the workings of autism. It’s two-plus-two-is-four thing for me, but I suppose some abstract mathematician will jump up and try to prove to me that somewhere in parallel universe, two plus two is not four. Rotsa ruck.
monday 9 may 2011
Here’s another synchronicity. Sometimes they seem to fall like rain in my life. I read my first definition and evaluation of synchronicities in a book by Deepak Chopra in the early 90’s. Since then I’ve also read Carl Jung’s definition and evaluation of same, as well as those of several other people. I’ve always been very engaged by synchronicities, even back in the days of childhood, when they were called coincidences.
I’ve been wondering a good deal over three years why so many children on the autism spectrum seem to have acted out a great deal when young, and I did not. I’ve found it very hard to accept a notion that I would be the only, or one of the very few, who very rarely acted out while growing up. How is it that I was for so many years so contained, and others on the spectrum were not?
Well, lo and behold I hear a story on the radio this morning about an autism study done by two amerikans, a husband and wife team. They were trying to answer the question of why it is that autism conditions are being diagnosed so much more frequently than they used to be. Is it because professionals have just become so much better at recognizing potential autistics, or is it because autism is on the rise? We are a devastating minority in the world, we autistics. John Michael Carley, in his book Asperger’s from the Inside Out, states that only 2 million amerikans (out of 300 million) are on the spectrum. In another part of the book he suggests that a ratio very similar to this holds true worldwide.
So the husband and wife team do their study in South Korea, where the wife was born. They test children who have already been identified as autistic, and then they also test children who haven’t. Children who are in mainstream schools, who get decent grades, and who are not behavior problems for teachers. And among these seemingly average, well-adjusted children, they find a whole bunch more autistics. Beneath their acceptable social veneer, these kids were having a lot of trouble with relationships, and other difficulties usually associated with some form of autism. The couple found 2.6% more autistic children than the school system and other professionals had identified, and they themselves were surprised at this percentage. Since neither this couple nor anyone else has any reason to believe that there are more autistic people in South Korea than there are anywhere else, this study seems to suggest a couple of unexpected answers to those questions they started out with: Is autism on the rise? Maybe. Is it being diagnosed so much because professionals have got so gosh-darn good at spotting potential cases? Milder forms of autism are still being routinely missed. And it seems that the missed children are a lot like I was: obeyed the teachers, didn’t throw tantrums, did school work well, etc. Did I have as many friends as most other kids? No. Did I spend as much time with my friends as most other kids did? No. Did I understand the other kids? Not too much. I isolated a lot, in my room with a book, or drawing paper, and several animals shut in there with me. I was often depressed, often disgusted by people, and often yearning to scream at the top of my lungs.
Well, there might be more of us on the spectrum than those who diddle with these things ever thought. But it will never be enough in terms of numbers to make us anything other than vastly in the minority versus neurotypicals. I am, however, very relieved to know that there are auties and aspies out there who somehow manage to hide all the befuddlement and dislike they feel for the neurotypical world, as I did. Who refrain from acting out and keep as much of their condition out of sight as they can. This has the downside of leaving them undiagnosed, as it left me. Jeeze, I’m so old that for anyone in my day to have had any thoughts about autism, I or any other kid would have had to bang our heads, pee our pants, and slash the teachers with scissors. It just wasn’t on the radar in my day. In a lot of people’s days, as it turns out, because though you don’t get to hear much about it, adults continue to be diagnosed with Asperger’s.
These attempts to fit in, to fit in at least partway. Over the years they have been a source of ever-increasing strain and demoralization. And they have been launched in conjunction with simultaneous attempts to be accepted as I am. Hoping for a 50-50 kind of truce. I’ll fit in halfway, and you accept the fact that I’m odd, and that maybe 50% of the time you need to interact somewhat differently with me than you do with most of the other people that you know, and have different expectations of me, and realize that I have different expectations of you than your non-odd friends and relatives have. Trying and failing, year after monotonous year. Failure after failure to get a worthwhile, meaningful relationship that lasts.
This fitting-in war is something I’m very eager to discuss with other Aspies, but I don’t know any other Aspies. I did meet one guy in 2009 who said he had Asperger’s, but he was also, as far as I could tell, loopy, so he wasn’t going to be any help. Aspies can be loopy, just as neurotypicals can be. If there are any others in my personal acquaintance who have Asperger’s, they haven’t told this to me.
Once I started using the internet, I began trying Aspie websites, but never was able to engage any of the people on them in any meaningful discussion of the things that I most want to talk about. Many of the people on the websites that I tried are decades younger than I am, and have, it seems, different things on their minds than I do. But one interesting discussion thread on a forum I went to involved a number of Aspies saying that they have met other Aspies in their own lives, and they don’t like them. So this is interesting, and depressing, at the same time. Is this a picture of alienation that we can’t escape: many of us don’t like or get along with neurotypicals, and they don’t like or get along with us, but when we turn to each other, the same garbage results?
It seems to be the case, thus far at least. I haven’t yet run across Aspie blogs or forums where someone says they have a tremendous, fulfilling, lasting relationship with either a neurotypical or with another Aspie. The few times I’ve read Aspies going on about their non-Aspie spouses, I get a couple of sentences about how wonderful and supportive these spouses are, followed by a couple more sentences about the shortcomings of the spouse, so I don’t know what to think.
And after everything that I’ve been through with people, especially in the last three years, I now find I have no desire whatsoever to fit in even a little. What I want is to be taken as I am, and valued as I am, and respected as I am, and treated with kindness. Don’t harp at me (or quietly resent me within yourself) for not smiling, or for being a depressive, or for not making much eye contact, or for not being huggy, or for not wanting to go where there are lots of people, etcetera etcetera. You, other person in the relationship, say and do and fail to say and do many things that are important to me, and if I can keep trying without getting mean and nasty to you, then you can do likewise for me. Learn something about Asperger’s in general and mine in particular if you’re in a relationship with me, just as I would learn a bit about your bipolar condition or lupus or whatever other incurable issues you bring along. Don’t just sit back on your hiney bitching that I won’t become who it is you want me to be: someone you can be emotionally and intellectually and morally lazy with. That is the resentful, demoralized, worn-out point in which I now reside.
Page Five…. (from the blog)
may 21, 2008 greenfield
So much of my life I strained to fit in with them, the neurotypicals, strained to fit in at least enough to satisfy that primate need for the companionship of our own kind. And I got meanness, viciousness, abandonment, ridicule, and so on. It’s really only since I started learning about Asperger’s three years ago that I began gradually to give up trying to fit at all, began to give myself permission to be neurologically different. But they wouldn’t give me permission. They had to keep up with the aggression until I had nothing left.
Update 27 July 2009: What can I say more than a year later? I want to be away from them, most of the humans. I don’t want to look, don’t want to hear, don’t want to speak. I want only the eyes and ears and bodies of the animals I love, who were stolen and hidden here and there, and lies were told to me about where, and I was never allowed to visit any of the ones they let live a while. I don’t want the humans. I have one human, neurotypical friend now. Her voice I want, the sight of her I want. Otherwise the humans are more a burden than they ever were, because they have traumatized me and stolen from me more than I could bear.
Page Four…. (from my asperger’s blog)
Tues 13 May 2008….. greenfield
Well, thanks again Gonen, for your email. If there are any new ones, I’ll get to them sometime. Right now I’m having a moratorium on email, and paper mail, and the telephone. Couple of weeks ago I met a whole new batch of mental health workers, who turned out to be just as full of flim-flam as the first bunch. The new batch is still emailing me, I think, and I’m not interested in anymore bullshit. I have a very happy fantasy sometimes that all the neurotypical bullshit artists drop dead of some disease, all at once, and only we neurosmarties on the autism spectrum are left. And the animals, of course, who are neurosmarties as well.The dilemma, always: as primates, we need some kind of bonding with other humans (though small doses work best for me), but the other humans are so bloody insufferable, how can we possibly form any meaningful bonds with them? Do you know?
Update 22 July 2009, Turners: The same, the same. I want their world less than ever. I long for the world I had, with a home, with the animals, and I would put my one new human friend in it. Nothing else interests me. I haunt the streets of Turners Falls, where we had our life together, nothing more than a ghost.
In this post, my resentment and anger at the neurotypical world is obvious. It will be obvious many times in this book. I won’t apologize for it, because such an apology would be dishonest. I’m not sorry. Anymore than any of the neurotypicals who’ve harmed me, mocked me, ostracized me, or tricked me in my life are sorry.
I can’t remember a time when I didn’t feel there was some kind of invisible wall, a science fiction force field, that kept me from completely connecting with, or fitting in with, other people. My conscious memories begin at the age of three, and even then I felt this impediment. I never, however, felt this with animals, and this is one reason that so early in my life I developed a preference for animals over people. Another reason is that I trusted animals, and felt I understood them, and could never say those things about any human bein without adding serious qualifying statements and disclaimers. It’s true that I was set apart from those around me by ten years of tedious illness in childhood, but I’ve never believed that the illness was the major element of the force-field. I would get to the advanced age of fifty-two before I would discover a name for the major and permanent component of the disconnect between me and other humans, and that name was Asperger’s Syndrome.
Over the three years I heard various stories on public radio about Asperger’s, I only felt more strongly with each new story that this condition explained a great deal about my self and my life that I had been unable to coherently explain for decades. And as the decision that I indeed had Asperger’s grew ever more firm, I repeated — demonstrating that lack of common sense that is so frequent in Asperger’s — a mistake that I’d made in 1999 when I was diagnosed with post-traumatic stress disorder. I began sharing my self-diagnosis with a few people, certain that once they knew I had this condition, they would take it into consideration in their dealings with. And of course this didn’t happen, anymore than it had when I shared the PTSD diagnosis. Rather than seeing people respond to my limitations with consideration and some degree of compassion, they did the reverse. They became even more inclined to bully me, lie to me, abandon me, and so on. A lesson that I had learned as a young adult (and yet always desperately hoped would turn out not to be true after all) was that if humans sniff out weak spot, they will, like heat-seeking missiles, go straight for the jugular. In 1999, the response to my PTSD solidified this lesson, and yet in 2006 and 2007, I conducted the same stupid experiment all over again with Asperger’s. No common sense.
And so it stands, now that I am fifty-eight, inscrutable and proven over and over again in my life by the casually and very deliberately cold or cruel or neglectful behavior of those ones that walk on two feet: they will go for any weakness with relish, and without remorse.
Page Two… (from the blogs)
“Asperger’s Syndrome is not a mental illness, and it’s not a disease. It is a neurological condition that sets us apart from most of the people on the planet in both good and bad ways.” ~~~ Michael John Carley Asperger’s From the Inside Out
I began hearing stories about Asperger’s on public radio in 2004. When I heard the first story, I felt it explained a great deal about both me and the way people had treated me in my life. With that first story, I was pretty sure I had it. There were many more stories about it on the radio over the next four years, and I only became more convinced that I was an Asperger’s person.
In the last two years I’ve done a fair amount of reading on the subject, and I remain convinced. I did have a diagnosis, but that diagnosis was arrived at in a way that can only be called bizarre, and the result reported to me by a person who is not any kind of clinician (this is covered in more detail on the blogs). In any case, I believed this person when he told me I have Asperger’s, because I didn’t have much doubt of it anyway. But I was 55 when I got this diagnosis, and am 57 now. Very late in life to find out you have a disorder that has affected, very negatively, your whole life.
Asperger’s is a disorder on what they call the Autism Spectrum, and is the mildest form of autism. Like all forms of autism, it can vary greatly from person to person, both in severity and in types of symptoms.
In several posts on my online journals I’ve quoted from Donna Williams’ book, Nobody Nowhere, and it’s appropriate to do so again. So much of what she describes in that book depicts some of my own behaviors and attitudes, fits so perfectly with who I am and how I react. So, to that end:
” … simple things left such a long-term impact .” ~~ “… a world I found foreign and unreachable.” ~~ “Although I was intelligent, I seemed to lack sense.” And quoting something said to her by one of her friends: ” ‘ One day you were talking to me; the next day it was as though we’d never been friends.’ “ These are reactions and behaviors that I still have. In fact, when my post-traumatic stress disorder began to get much worse in my forties, so did my Asperger’s symptoms, which had previously been rather mild compared to a lot a of people with the syndrome.
This has been a tremendous problem my entire life, and I’ve been castigated for it for 57 years now, by a great huge number of neurotypical control-freaks (sometimes I wonder if all neurotypicals are control-freaks). I wrote a post about it once on an Asperger’s website (WrongPlanet) and hoped that I would get some feedback from the other bloggers concerning their own difficulties with smiling, if they had them. But as I got no feedback, I have nothing to report about other Aspies and smiling. In my reading of articles, however, I’ve come across more than once the fact that being not much prone to smiling is almost a defining characteristic of Asperger’s.
Not only am I not much prone to smiling myself, but I have very negative reactions to other people’s smiling. I very seldom see a smile, whether it’s given to me or to someone else, that appears sincere. Most of the smiling I see going on around me looks (to my eyes) either 1. idiotic or 2. insane. I usually cannot take it seriously, cannot take it as genuine.