This is not a tutorial.
It's a question.
At what point does toughness and rugged determination, cross over into delusional stubbornness and perseverence?
I don't have the answer to this, and being autistic, i don't know if ever will to a degree that makes me comfortable. My very nature, like many others on the spectrum is interwoven with the tendency to perseverate. This word has a few different definitions so i'll clarify a bit. One listed from wiki states: "the inability to switch ideas along with the social context, as evidenced by the repetition of words or gestures after they have ceased to be socially relevant or appropriate," ... Which is pretty good, but not an all inclusive explanation.
http://en.wikipedia.org/wiki/Perseveration
More or less, what happens is we get stuck. There is a point at which rational minded people would abandon a cause for one reason or another.
it could be simple disinterest, it could be that the platform has been abandoned and they are following the crowd (like from myspace to facebook ) It often times is because completing the intended action has become too difficult, and also could be that a person has made a reasoned observation that the amount of energy they would expend to complete it would be much greater then the end result (Sure i COULD repair that dvd player.. but a brand new one is 20 dollars at wal-mart.)
These options have never worked for me. It seems without fail, once i am commited to a task in the immediate sense, i am STUCK firmly to that task until it's completion, much to the detriment of my sleep schedule, any appointments i may have to keep, my hygiene, and even my ability to feed myself. I have on many occasions, just forgotten to eat as a result of my level of involvement with whatever i engaged with, and it's not until i feel dizzy, or dehydrated , or deeply ILL that i notice. Occasionally, i have someone remind me, and then i eat or drink before returning to to task, but if i'm alone..
Many examples exist in my own life where i have stayed awake for 3 days to fix something. Usually this has to do with electronics. It could be building, stress testing, and repairing a computer, or last year, dismantling, rebuilding and repairing an X-box 360 that had stopped working by resoldering it and swapping a few parts.
The point is, while in some of these cases, the end result is great. I did fix the xbox and saved 300 bucks. I fixed a dvd player and saved 100 bucks. I fixed a computer and saved someone tons of expense. However the darker side of perseveration starts to drag into interaction with other people, and behaviors that can show potential co-morbidity with OCD.
Giving up on a task is hard enough, with someone who is built more then a little inflexible, but how do you decide when to give up on a person? How do you DATE as an autistic and NOT just spend your relationships treating people like things to fix, never giving up because "you started it, and you have to finish it."
I know, externally, not intuitively, that people can not be dealt with in such a manner, and i know that at some point, you have to let go. I feel as if i lack to insight to be able to accurately identify HOW and WHEN that should happen. It tends to make me more black and white, and less forgiving when i try to create a system for myself.
3 Strikes and your out. I know . What about extenuating circumstances? When if your partner is "going through something" and as a result is uncharacteristically mean towards you? Should this allow for special considerations?
What if the infraction from another party was unintentional or "an accident." How many times do you allow for "Accidents" of this nature before disregarding this distinction? I have always said something to the effect of: "I don't care if it's an accident. If you shot me and aimed at the guy behind me, i'm still shot. I'm not LESS shot because it was accidental."
Who's wrong/right in that scenario?
If you honor all your agreements with a friend/relation and they repeatedly fail to honor theirs, how many "Chances" do you allow them before deciding to remove them entirely from your life? Living up to one's word is very important to me. I am deeply honest, and rely on honesty to communicate with others in a world in which i experience a high degree of social blindness. I rely on my honest communication of my intent and feelings because i cannot reliably read the subtext and social ques of others as a communication mechanism. When others fail to maintain honesty in actions AND in a words, the disconnect is deeply disconcerting for me, and i feel slighted, and disrespected when i am lied to.
You may justify it as a "Small Thing" ("I forgot to pick you up when i said i would. Come on, it's not that big a deal.") but i wouldn't agree to do something, and then "Forget." and THEN be nonchalant about it. If i make a commitment, i stick to it.
I'm still trying to learn, everyday, about how to have better interactions with others in a world that is full of invisible pits for me to stumble into that others see perfectly.
In the meantime, i'll keep asking questions, and carefully analyzing answers. So i'm not being funny, or sarcastic, or rhetorical when i ask you,
"How do i know when to give up?"
Wednesday, October 3, 2012
Monday, October 1, 2012
The unbearable heaviness of being.
I had an odd lucid dream some days ago, and it was transcendently depressing.
I've long experienced a profound frustration with other people. That manifested in my mid teens as a palpable rage about the incompetence and idiocy of others, but grew to be a begrudgingly accepted truth as i grew older.
It was embodied by a phrase i used to describe how i felt about the phenomena,
"You can't fault a dog, for being a dog."
I've read so much in my life between those age goalposts, and seen my initial feeling echoed out in the idea space by pained and tortured scientists, authors, artists and intellectuals throughout time. Expressing a persistent melancholia about being so removed from others.
The issue of autism acceptance can cut both ways you see, with you not wanting to accept me for my unique abilities being the most common manifestation, but also with me not able to connect to yours. Even though my desire to connect is sincerely genuine.
When you are truly gifted at something, be it language or science or art or music or even building a cement foundation, interaction with others attempting that same thing look positively oafish. Co-mingling with them is irritating, there unfinished gangly attempts brushing up against the polished surfaces of your very skin.
The bricklayer who is a true master see's idiots and imbeciles in his fellow bricklayers and takes no joy in it. The initial swell of ego often pursued vociferously by others is long gone for these masters. It's unwelcome replacement is this untenable disappointment that moves in to fill the void.
You want to be surrounded by people of equal competence, not merely accepted but integrated with communication that flows in both directions. However if you are superior at a given thing, that communication is always unidirectional. You are always having to advise, correct, repair, and refurbish the efforts of the average people that comprise the majority of humanity.
It is, in a word, unsatisfying.
And this ANGST, this ineffable thing that i've detected in written works for so long that these masterful sorts express, is a result of an unfortunate conundrum they find themselves embroiled in.
A good person can not HATE or DISDAIN a person of lesser ability simply on the grounds that he or she may be in one or many dimensions, inferior to him or herself.
"You can't fault a dog for being a dog."
You can't fault a human for being, average.
But this offers little to no comfort to the gifted, as now there is no grounds to expect or have hope for the average party to mysteriously metamorphosize into a gifted person. Some abilities and gifts are inborn, genetically encoded, and no amount of push up's or reading of Proust will change that.
In my dream i was a father like figure, teaching someone how to ride a bike, with training wheels. And while i am happy for the person i have taught, and this achievement is certainly worthwhile and significant in their development, i and overwhelmed with sadness at the gulf that this reveals between us.
"You can't fault a dog for being a dog."
And it wouldn't make me feel any better, if i could.
I am "Gifted" this angst, this profound and deep sadness, and there seems to be nothing anybody can do about it.
I wish to be with you. I wish to be like you. I wish to be inside, looking out at the grey drizzle.
And if wishes were horses,
beggars would ride.
I've long experienced a profound frustration with other people. That manifested in my mid teens as a palpable rage about the incompetence and idiocy of others, but grew to be a begrudgingly accepted truth as i grew older.
It was embodied by a phrase i used to describe how i felt about the phenomena,
"You can't fault a dog, for being a dog."
I've read so much in my life between those age goalposts, and seen my initial feeling echoed out in the idea space by pained and tortured scientists, authors, artists and intellectuals throughout time. Expressing a persistent melancholia about being so removed from others.
The issue of autism acceptance can cut both ways you see, with you not wanting to accept me for my unique abilities being the most common manifestation, but also with me not able to connect to yours. Even though my desire to connect is sincerely genuine.
When you are truly gifted at something, be it language or science or art or music or even building a cement foundation, interaction with others attempting that same thing look positively oafish. Co-mingling with them is irritating, there unfinished gangly attempts brushing up against the polished surfaces of your very skin.
The bricklayer who is a true master see's idiots and imbeciles in his fellow bricklayers and takes no joy in it. The initial swell of ego often pursued vociferously by others is long gone for these masters. It's unwelcome replacement is this untenable disappointment that moves in to fill the void.
You want to be surrounded by people of equal competence, not merely accepted but integrated with communication that flows in both directions. However if you are superior at a given thing, that communication is always unidirectional. You are always having to advise, correct, repair, and refurbish the efforts of the average people that comprise the majority of humanity.
It is, in a word, unsatisfying.
And this ANGST, this ineffable thing that i've detected in written works for so long that these masterful sorts express, is a result of an unfortunate conundrum they find themselves embroiled in.
A good person can not HATE or DISDAIN a person of lesser ability simply on the grounds that he or she may be in one or many dimensions, inferior to him or herself.
"You can't fault a dog for being a dog."
You can't fault a human for being, average.
But this offers little to no comfort to the gifted, as now there is no grounds to expect or have hope for the average party to mysteriously metamorphosize into a gifted person. Some abilities and gifts are inborn, genetically encoded, and no amount of push up's or reading of Proust will change that.
In my dream i was a father like figure, teaching someone how to ride a bike, with training wheels. And while i am happy for the person i have taught, and this achievement is certainly worthwhile and significant in their development, i and overwhelmed with sadness at the gulf that this reveals between us.
"You can't fault a dog for being a dog."
And it wouldn't make me feel any better, if i could.
I am "Gifted" this angst, this profound and deep sadness, and there seems to be nothing anybody can do about it.
I wish to be with you. I wish to be like you. I wish to be inside, looking out at the grey drizzle.
And if wishes were horses,
beggars would ride.
Thursday, July 19, 2012
Neurotypicals and you.
SIGH.
I bet i'm more frustrated with you then you are with me. You have to deal with me once, i have to deal with you EVERYDAY AND FOREVER AND EVER.
Communication difficulties are the hallmark of an autistic person's life. It doesn't matter where you fall on the spectrum, if you are on it at all, this problem is assured.
I often find myself sitting in the wake of various histrionic outbursts, pondering the thrashing, hostile neurotypical that has just stormed out.
Sometimes i myself become angry, as i saw nothing wrong or offensive with my response, but find myself being verbally assaulted with vulgarities seemingly out of blue, and i am a grown man. I will not be talked to in such a manner unless it is truly warranted.
I've tried to make sense of this for my lifetime, and it never, never makes sense to me. Some suggestions for neurotypicals engaging in communicative efforts with those on the spectrum.
DO NOT ASK A QUESTION YOU DO NOT WANT ANSWERED
This is paramount. If you are not ready for the full range of possible answers to a question, DO NOT ASK IT. What the neurotypical mind is designed to do, anatomically speaking, is to be a predictive computer. All of our TESTS for intelligence are based on prediction. What word comes next in this sequence? Which order do these images go in, and so on.
So i suspect i understand what is happening here.
You are asking a question, but predicting an answer. If the response falls outside that range of predicted outcomes, it elicits hostility, or a general negative emotive response. I cannot read your mind. I cannot read your face. I cannot read the hundreds of ques that other NT's can read that would allow me to know exactly the thing you want to hear in this instance. You created a loaded situation for yourself, and me, so read the caps-locked-bolded part a few more times. I do not want to hurt your feelings, and i do not take kindly to being yelled at, over reacted too, or treated with great hostility when i do not understand the cause. I am honest, i am different from NT's, this is true. That does not mean i am LESS than, and i will not be ABUSED because you are incapable of hearing certain sequences of words.
SAY WHAT YOU MEAN
If you are the significant other of someone with ASD learn how to do this as soon as humanly possible.
If you come home after a long day at work, and start talking about something that is deeply frustrating for you, and you are VENTING and expressly DO NOT WANT ANY INPUT on the situation you are relaying, YOU MUST START WITH THAT FIRST. If your stress about this day or said situation is profound, and my response, as covered in lesson one, is not what you predicted, or want to hear, you will likely become more agitated and now direct that stress and anger squarely at your partner, whom up until a moment ago, was a confidant, and is now, a punching bag that had nothing at all to do with your stress.
It is considered, i'd like to think universally, EVIL or at the very least, cruel, to hit a pet, or spank a child for it's actions when it cannot comprehend what is occurring. I do not know at what point responding to a statement was grounds for full out verbal nuclear warfare, but had i known, i certainly would have avoided in it entirely. I get no joy from oppressing or irritating others indiscriminately. I am pedantic by design as a result of my brain's biology, not because of my desire to show off my intelligence or make you feel stupid.
BE SPECIFIC
This is a continuation of lesson 2, but important. When you say, "I wanted you to support me."
I don't know what the fuck your talking about. Seriously. Even if i've known you my entire goddamn life, that sentence means NOTHING to me. It's far too vague, it forces me to make vast amounts of assumptions about what your precise desires are and am not comfortable doing that. I will not undertake to do something i know i will FAIL at, just because you are incapable of more coherent language. I experienced this problem once in a very short job i held as a prep cook. I would be given a list of materials and quantities required of me to prepare for the chef, but no notes regarding specifics. To tell someone, "chop this up." Is woefully inadequate to me. Do you want to onions diced? Chopped? Quartered? Cut into strands? I was NEW TO THE JOB, and in all situations dealing with people, i respond that same way. I will not prepare all the food under the assumption that perhaps, this is how you want it done, only to be browbeaten upon completion because you did not specific the thing you wanted because your inconsiderate or just a complete idiot.
Tell me how you want it done, and I will do it perfectly, comfortable that our communication was flawless, and that i did the job I was supposed to do, not the job I assumed that you wanted done.
Think about it. The whole fucking world runs like this. I feel so excluded from virtually everything that it takes all of my will power to get out of bed day to day, and you could help me so much, by just thinking a BIT more about how you act, what your saying, and by being a little considerate.
DON'T FORGET
That i am on the spectrum.
That just leads into the whole mess repeating itself. You get angry at me for some perceived slight or lack of some vague feeling of support or politeness or social protocol that i did not enact....
and i am depressed and irritated that all the times i explained in great depth, THAT I AM NOT LIKE YOUR FRIENDS,AND THAT MY BRAIN WORKS DIFFERENTLY THEN THE PEOPLE YOU WORK WITH, and yet your still getting angry at me for the way i think and the way i talk, even after spending countless hours carefully explaining how i work to you. I feel twice slighted, for not being listened to, and then being yelled at.
--------------------------------------------------------------------------------------------------
I still don't know if there is any practical way in which those on the spectrum and your average NT can interact in a fulfilling manner without these reactions eventually driving the autistic to live out life like a hermit in a cave due simply to be outnumbered by those that would be oppressive and close minded about different types of people. I'm going to sit in my cave for ANOTHER 10 years, while i think about it.
This structure heaves and sags under it's own weight, and i have no course, but to patiently await it's fall.
I bet i'm more frustrated with you then you are with me. You have to deal with me once, i have to deal with you EVERYDAY AND FOREVER AND EVER.
Communication difficulties are the hallmark of an autistic person's life. It doesn't matter where you fall on the spectrum, if you are on it at all, this problem is assured.
I often find myself sitting in the wake of various histrionic outbursts, pondering the thrashing, hostile neurotypical that has just stormed out.
Sometimes i myself become angry, as i saw nothing wrong or offensive with my response, but find myself being verbally assaulted with vulgarities seemingly out of blue, and i am a grown man. I will not be talked to in such a manner unless it is truly warranted.
I've tried to make sense of this for my lifetime, and it never, never makes sense to me. Some suggestions for neurotypicals engaging in communicative efforts with those on the spectrum.
DO NOT ASK A QUESTION YOU DO NOT WANT ANSWERED
This is paramount. If you are not ready for the full range of possible answers to a question, DO NOT ASK IT. What the neurotypical mind is designed to do, anatomically speaking, is to be a predictive computer. All of our TESTS for intelligence are based on prediction. What word comes next in this sequence? Which order do these images go in, and so on.
So i suspect i understand what is happening here.
You are asking a question, but predicting an answer. If the response falls outside that range of predicted outcomes, it elicits hostility, or a general negative emotive response. I cannot read your mind. I cannot read your face. I cannot read the hundreds of ques that other NT's can read that would allow me to know exactly the thing you want to hear in this instance. You created a loaded situation for yourself, and me, so read the caps-locked-bolded part a few more times. I do not want to hurt your feelings, and i do not take kindly to being yelled at, over reacted too, or treated with great hostility when i do not understand the cause. I am honest, i am different from NT's, this is true. That does not mean i am LESS than, and i will not be ABUSED because you are incapable of hearing certain sequences of words.
SAY WHAT YOU MEAN
If you are the significant other of someone with ASD learn how to do this as soon as humanly possible.
If you come home after a long day at work, and start talking about something that is deeply frustrating for you, and you are VENTING and expressly DO NOT WANT ANY INPUT on the situation you are relaying, YOU MUST START WITH THAT FIRST. If your stress about this day or said situation is profound, and my response, as covered in lesson one, is not what you predicted, or want to hear, you will likely become more agitated and now direct that stress and anger squarely at your partner, whom up until a moment ago, was a confidant, and is now, a punching bag that had nothing at all to do with your stress.
It is considered, i'd like to think universally, EVIL or at the very least, cruel, to hit a pet, or spank a child for it's actions when it cannot comprehend what is occurring. I do not know at what point responding to a statement was grounds for full out verbal nuclear warfare, but had i known, i certainly would have avoided in it entirely. I get no joy from oppressing or irritating others indiscriminately. I am pedantic by design as a result of my brain's biology, not because of my desire to show off my intelligence or make you feel stupid.
BE SPECIFIC
This is a continuation of lesson 2, but important. When you say, "I wanted you to support me."
I don't know what the fuck your talking about. Seriously. Even if i've known you my entire goddamn life, that sentence means NOTHING to me. It's far too vague, it forces me to make vast amounts of assumptions about what your precise desires are and am not comfortable doing that. I will not undertake to do something i know i will FAIL at, just because you are incapable of more coherent language. I experienced this problem once in a very short job i held as a prep cook. I would be given a list of materials and quantities required of me to prepare for the chef, but no notes regarding specifics. To tell someone, "chop this up." Is woefully inadequate to me. Do you want to onions diced? Chopped? Quartered? Cut into strands? I was NEW TO THE JOB, and in all situations dealing with people, i respond that same way. I will not prepare all the food under the assumption that perhaps, this is how you want it done, only to be browbeaten upon completion because you did not specific the thing you wanted because your inconsiderate or just a complete idiot.
Tell me how you want it done, and I will do it perfectly, comfortable that our communication was flawless, and that i did the job I was supposed to do, not the job I assumed that you wanted done.
Think about it. The whole fucking world runs like this. I feel so excluded from virtually everything that it takes all of my will power to get out of bed day to day, and you could help me so much, by just thinking a BIT more about how you act, what your saying, and by being a little considerate.
DON'T FORGET
That i am on the spectrum.
That just leads into the whole mess repeating itself. You get angry at me for some perceived slight or lack of some vague feeling of support or politeness or social protocol that i did not enact....
and i am depressed and irritated that all the times i explained in great depth, THAT I AM NOT LIKE YOUR FRIENDS,AND THAT MY BRAIN WORKS DIFFERENTLY THEN THE PEOPLE YOU WORK WITH, and yet your still getting angry at me for the way i think and the way i talk, even after spending countless hours carefully explaining how i work to you. I feel twice slighted, for not being listened to, and then being yelled at.
--------------------------------------------------------------------------------------------------
I still don't know if there is any practical way in which those on the spectrum and your average NT can interact in a fulfilling manner without these reactions eventually driving the autistic to live out life like a hermit in a cave due simply to be outnumbered by those that would be oppressive and close minded about different types of people. I'm going to sit in my cave for ANOTHER 10 years, while i think about it.
This structure heaves and sags under it's own weight, and i have no course, but to patiently await it's fall.
Saturday, May 5, 2012
Autism Spectrum Disorder and co-morbidity
It's been a bit since i've posted but there is never a lack of things to talk about.
Today i'd like to talk about some of the co-morbid conditions that are commonly present with Autism spectrum disorders, including which affect me.
This is by no means an attempt at a complete list, it's actually fairly exhausting how many different things may be linked, but some do not have enough research yet to be formally included, such as:
Oppositional Defiance Disorder
I was observed very early in my educational life as being an odd duck, being evaluated as early as the first grade. It was recommended that i see a therapist, even at that age, but my mother, fearing the social stigma that accompanies mental illness (and perhaps in part, due to our poverty) did not agree with that accessment. This diagnosis was given to me after several ADD/ADHD diagnosis have already been leveled towards me, but know that this particular co-morbid condition is rare, and tends to be reserved for those the research suggests are "lower functioning."
Bad handwriting? Check. Clumsy as all heck? Check. Inability to hit a softball lobbed underhanded in front of me? check. Another co-morbid condition for those on the spectrum that is very common is called Dyspraxia, or Motor skills disorder. My handwriting to this day is quite awful, but it seems we live in an age where that is of much less consequence now thanks to computers, smartphones, and email usage, but it was a huge stumbling block when i was a kid in school. Many a paper was returned covered in red ink with words circled and question marks written by them. =-/ My inability to be very coordinated also made team sports, and all sports, quite rough for me, ensuring that i was always an awkward and below average performer in every one i tried. And i DID try. I went out for baseball, but had trouble both catching AND hitting. I managed to get on the basketball team, but largely out of pity, and was barely every allowed to actual play at games (unless of course we were getting destroyed or ahead by an absurd number or the coach wanted a laugh.) I did later develop respectable shooting skills in basketball, but could not "move" with the ball very well at all.. still can't. A life of the mind is more in line with my abilities and i'm ok with that. I can play tactical games with uncanny proficiency and skill and that suits me just fine. =-D It does contribute to the amount of bullying and teasing you get in school invariably however. Part of the package.
This is in part related to Sensory Processing Disorder, which is basically over or under sensitivity to a wide variety of stimuli. There are many theories and studies being done regarding this, and many a person with ASD can readily identify with this particular disorder. I myself have heightened sense of hearing, sensitivity to light, and sense of smell, but an under sensitivity to pain in general. This plays a big factor in a pretty common occurrence for many of us which is "sensory overload" or Overstimulation. Sometime's the supermarket seems quiet and bearable, other times, it's packed with people, very LOUD machines are moving and beeping, people bump into you, and then your starting to have a meltdown in the store. It's pretty easy for this to creep up on you before you fully realize it and then you've got a rough day ahead of yourself. People likely won't understand and often will be judgmental and rude but if you have to just run the hell out of a place because your feeling overwhelmed, ignore the peanut gallery and get the heck out of there.
Depression/Bipolar/unipolar disorders.
All dreadfully common co-morbid conditions unfortunately. The depression does TEND to be directly related to the communicative difficulties we all have on the spectrum (you'd be frustrated and depressive too if you couldn't relate to anyone) so thankfully this one tends to be something (at least in my opinion) i think can be best dealt with by having supportive people in your life and a network to make you feel wanted, and valid. I want to be independent, i WANT to have friends and a job and contribute as best i can, but fighting and uphill battle against a close minded and merciless world takes it's toll. I would always advocate talk therapy and the human element over medication first and foremost. This is not enough in ALL CASES of course.
ADHD
Well this was what started me on my journey. I was diagnosed with ADHD as a child, and this is a pretty common co morbid condition. However, after being tried on several medications (including the classic, ritialin) They found no positive effects. I lost weight as a result of the ritalin in particular, and as a very skinny child to begin with, they gave up on the drug route. It turns out that it's a pretty common misdiagnosis, to mistake those on the spectrum who may have accelerated skills in certain areas, or mild savantism, as having a hyperactivity problem. When in fact, they are just completing the standard educational material at a much faster rate then those around them, and as a result, incredibly bored and understimulated, resulting in "hyperactive" behavior.
There are a few others, with scant research to back them up... Like Bowel disorders, or Anxiety disorders (which are often just par for course under an ASD diagnosis) But those are the one i personally have had experience with. For every 100 people that read this, i'd like for there to be a few people that go "YES, that's exactly what i went through!" but if wishes were horses, right?
Hope this helps some of you out there trying to live full, diverse lives with ASD, and the few, the valuable, cool people who support someone who is affected for the right reasons, because they love them, and want to see a more tolerate, intelligent world.
Today i'd like to talk about some of the co-morbid conditions that are commonly present with Autism spectrum disorders, including which affect me.
This is by no means an attempt at a complete list, it's actually fairly exhausting how many different things may be linked, but some do not have enough research yet to be formally included, such as:
Oppositional Defiance Disorder
I was observed very early in my educational life as being an odd duck, being evaluated as early as the first grade. It was recommended that i see a therapist, even at that age, but my mother, fearing the social stigma that accompanies mental illness (and perhaps in part, due to our poverty) did not agree with that accessment. This diagnosis was given to me after several ADD/ADHD diagnosis have already been leveled towards me, but know that this particular co-morbid condition is rare, and tends to be reserved for those the research suggests are "lower functioning."
Bad handwriting? Check. Clumsy as all heck? Check. Inability to hit a softball lobbed underhanded in front of me? check. Another co-morbid condition for those on the spectrum that is very common is called Dyspraxia, or Motor skills disorder. My handwriting to this day is quite awful, but it seems we live in an age where that is of much less consequence now thanks to computers, smartphones, and email usage, but it was a huge stumbling block when i was a kid in school. Many a paper was returned covered in red ink with words circled and question marks written by them. =-/ My inability to be very coordinated also made team sports, and all sports, quite rough for me, ensuring that i was always an awkward and below average performer in every one i tried. And i DID try. I went out for baseball, but had trouble both catching AND hitting. I managed to get on the basketball team, but largely out of pity, and was barely every allowed to actual play at games (unless of course we were getting destroyed or ahead by an absurd number or the coach wanted a laugh.) I did later develop respectable shooting skills in basketball, but could not "move" with the ball very well at all.. still can't. A life of the mind is more in line with my abilities and i'm ok with that. I can play tactical games with uncanny proficiency and skill and that suits me just fine. =-D It does contribute to the amount of bullying and teasing you get in school invariably however. Part of the package.
This is in part related to Sensory Processing Disorder, which is basically over or under sensitivity to a wide variety of stimuli. There are many theories and studies being done regarding this, and many a person with ASD can readily identify with this particular disorder. I myself have heightened sense of hearing, sensitivity to light, and sense of smell, but an under sensitivity to pain in general. This plays a big factor in a pretty common occurrence for many of us which is "sensory overload" or Overstimulation. Sometime's the supermarket seems quiet and bearable, other times, it's packed with people, very LOUD machines are moving and beeping, people bump into you, and then your starting to have a meltdown in the store. It's pretty easy for this to creep up on you before you fully realize it and then you've got a rough day ahead of yourself. People likely won't understand and often will be judgmental and rude but if you have to just run the hell out of a place because your feeling overwhelmed, ignore the peanut gallery and get the heck out of there.
Depression/Bipolar/unipolar disorders.
All dreadfully common co-morbid conditions unfortunately. The depression does TEND to be directly related to the communicative difficulties we all have on the spectrum (you'd be frustrated and depressive too if you couldn't relate to anyone) so thankfully this one tends to be something (at least in my opinion) i think can be best dealt with by having supportive people in your life and a network to make you feel wanted, and valid. I want to be independent, i WANT to have friends and a job and contribute as best i can, but fighting and uphill battle against a close minded and merciless world takes it's toll. I would always advocate talk therapy and the human element over medication first and foremost. This is not enough in ALL CASES of course.
ADHD
Well this was what started me on my journey. I was diagnosed with ADHD as a child, and this is a pretty common co morbid condition. However, after being tried on several medications (including the classic, ritialin) They found no positive effects. I lost weight as a result of the ritalin in particular, and as a very skinny child to begin with, they gave up on the drug route. It turns out that it's a pretty common misdiagnosis, to mistake those on the spectrum who may have accelerated skills in certain areas, or mild savantism, as having a hyperactivity problem. When in fact, they are just completing the standard educational material at a much faster rate then those around them, and as a result, incredibly bored and understimulated, resulting in "hyperactive" behavior.
There are a few others, with scant research to back them up... Like Bowel disorders, or Anxiety disorders (which are often just par for course under an ASD diagnosis) But those are the one i personally have had experience with. For every 100 people that read this, i'd like for there to be a few people that go "YES, that's exactly what i went through!" but if wishes were horses, right?
Hope this helps some of you out there trying to live full, diverse lives with ASD, and the few, the valuable, cool people who support someone who is affected for the right reasons, because they love them, and want to see a more tolerate, intelligent world.
Saturday, April 21, 2012
Mild Savant-ism (why being smart and on the spectrum can be bad.)
Hello. Now that i have twice confirmed my condition i suppose it's time to get on with it.
Trying to find my place in the world has always been hard, and to this point, at 31, i've yet to feel like i have even gotten close. This isn't to trivial a task for others either, as i believe it CAN be hard for everyone to a degree, but being on the spectrum presents a host of challenges that often times i simply CANNOT explain adequately enough to others.
It's not uncommon for those with ASD to occasionally have a gift, or perhaps more than one. One of the odd little quirks of our differently-abled-ness is over-development in some parts of the brain yielding usual skill in one thing or another. This does not occur in all those affected, but when it does it is generally identified as a savant trait. I believe the most common pop culture reference to this was in Rainman, wherein dustin hoffmans character demonstrated extremely unusual acumen with all things mathematical.
Having had more iq tests, personality tests, and various ADHD tests, wasies, mullers, ravens, etc. then most any neurotypical person, i'd been told i had usually high iq scores, and a gift with language.
I come from a poor family, grew up with a single mom largely on welfare. Had life threatening asthma and all the social perils that growing up with ASD provides. I did poorly in school, as most affected do, with the sole exceptions being creative writing, English and anything related to computers. (i was taking apart and repairing apple 2 computers in the 3rd grade.) This is just to give you a little context. I never had special education or attention given to me, most of my schooling occurred before aspergers was even really diagnosed, and being poor and going to school in an impoverished area, there was no budget for me even if they had known. The best they could do, was some of my teachers would spend some out of pocket money to buy me extra books to read, as i was flying through the material i was given. During RIF *reading is fundemental* events, teachers would allow me to pick more books then the other kids, and some teachers would give me THEIR picks as well, which was something i was truly excited for as a kid. I read all the mythology books i could, books about dinosaurs and all the differences in breeds of dogs. But my real skill came from how i seemed to effortlessly metabolize language.
I to this day, find myself using words i don't even remember learning. Often times i will even look then up afterwards just to make sure they mean what i think they mean. Apart from one miss (The word, halcyonic) I'm spot on.
This has been an endless source of irritation for me, for the entirety of my life.
Some people have heard of kids with aspegers referred to as "Little professors" due to this abnormal verbosity, and i was no exception. My mother claims i started speaking at 9 months. When i, as an adult said "why didn't you think something was wrong with that if other children were not talking until 3 or older?"
She said "I just thought you were smart!" Smart, well, sort of, different, most assuredly.
I starting writing in the 3rd grade, and even HAVE that first journal. I have written ever since. I wrote one of the hallmark things that all aspies seem to feel and have that proof from my youth.
"I feel like an alien who learned human speech."
Turns out, i was right decades before i would know why.
Struggling with this reality, speaking a different language to everyone else, has done horrible things to my self esteem, my confidence, my ability to be proud of myself for who i am, and i'm sure been plenty unpleasant for those whom i've dealt with as well.
Everyone accusing me of being condescending all the damn time. Macho guys telling me i "Talk like a faggot." people staring at me after i spoke with an weird lifeless leer, dead eyed and baffled. Imagine the oddity of being dropped in the middle of any foreign country with just english at your disposal, and you have a fair representation of what it feels like. Now rarify that language, shrink the numbers to a fraction of 1% of the population at large, and THOSE are the people who can understand my native tongue, and whom i can understand.
The tides may be turning, and we may have more supporters for ASD now then ever before, but they are still a fraction of the world, and still in most cases, sadly, cannot communicate well with us, even if they are genuine, and completely sincere.
For everyone else, they think i'm a show-off or an arrogant asshole the second i open my mouth. I'm a know-it-all, a smart-alex. OR,
They think it's a gift. An amazing gift. I've heard equally as many times, "You sound so SMART! I wish i could talk like that." Therein lies the problem. I DO sound smart. I consider my ability a mild savantism. but if you had a person with math savantism or music savantism or could juggle anything in the room, or an eidetic memory, would you think that person was "OK"? Normal? Perfectly able to do all the things that other NORMAL people do?
Now what if that person had unexplainable eloquence and expressiveness through language?
They assume i'm just a REALLY SMART normal person. I should be able to do EVERYTHING they can. Hell, i should be able to do EVERYTHING BETTER! "If your that smart, it must be easy right?" "Geez if your so smart i bet it would be easy to be rich!"
Ableism. Because of how i present, it's my constant companion. But i haven't lived alone for more then a week in my entire life. I cannot drive a car. I get lost walking less then a mile from my home. I have been unable to maintain employment due to constant and inevitable social problems. Even though i completed 6 years of college and have degrees on my wall, i have never had the chance to get a job in the field of my education because i always fail the interview. It takes me 50 interviews just to get a minimum wage job because everyone tells me i'm "overqualified."
What a complimentary way to tell someone to fuck off.
And when i get that job, it takes a week for everyone i work with to despise me. I have difficulty doing so many of the things that neurotypicals take for granted, and yet it is likely i never qualify for any manner of disability due to my verbal savantism making me appear "Competent" in a way that i cannot live up too.
So if no one wants me as i am, and no ones buys me faking as a neurotypical (when i used to try) what kind of life do i have to look forward too?
Maybe when it comes to life, i'm just "Overqualified."
Thursday, April 12, 2012
Double AND nothing (you can do about it)
The testing process, Following the finding-a-doctor-and-money-and-insurance-and-someone-who-would-even attempt-to-diagnosis-a-30-year-old was lengthy, though shorter then the former. This process as of now, has been at least a year, if not 14 months or longer, to get to this point, and that illustrates an incredible problem for those who are affected, isolating fundamental flaws in the architecture of modern health care and Autism diagnosis, but that is a different post altogether.
Only a day ago, did i finally get the absolute last nail in the just barely proverbial coffin.
Yesterday punctuated yet another round of psychological testing, intelligence testing, and various other paperwork looking for markers of my condition. I don't take anyone's word for anything, so i took it upon myself to seek out a differential diagnosis. I had the best practices diagnostic manual for autism in it's most current iteration sent to my apt in it's entirety from the governing state body (Dept of mental health) and it suggested a person of my age invalidates most convention testing, leaving the best course of action to be a comparative approach utilizing multiple doctors and diagnostic measurements. State medicaid doesn't exactly cover that manner of thing, but the loopholes allowed for me to achieve as close to it as i could hope for with such limited resources.
Doctor 1 was a psychologist with 20 years of experience and 3 autistic children herself. While i feared bias, i also recognized that she has more experience witnessing behaviors and symptoms then most anyone i'd ever heard of, so i valued her opinion. She was the first to complete the process, and the one whom initially confirmed me as ASD (aspergers syndrome)
I suppose before that there was the informal evaluation i had from the state to find out if i was eligible for state insurance under a disability diagnosis.. Which confirmed i was eligible for free insurance under disability status, but did not confirm to me personally, WHAT that status was, so that may actually be the FIRST, though it may be something else.... no idea what.
Doctor 2, was more methodical then the first, approaching it first as a clinical psychologist, with a battery of tests, information taken from someone who knows me (rachel) self reporting, iq tests, mortality tests, attention tests, focus tests, motor skill tests, and on and on. My iq tests came out higher then those they compared against (8th grade tests retrieved from old school records) my comparative test of self reporting (i filled out and same questions then filled out ABOUT me by rachel) were relatively similar in curve, however i reported all the effects on myself at 2 to 3 grades higher of intensity then rachel reported while observing me. That seems quite sensible. My experience being more immediate and visceral then a bystanders.
I demonstrated some overlapping symptoms of ADHD (reported restlessness, both self reported, test indicated, and observed) however it is odd in how it manifests based on test data. It appears i have a great deal of physical restlessness (i am figdety and very often uncomfortable) but great visual attention (and ability to process data sets rapidly switching without being confused, with counter indicates ADD or ADHD (the doctor finds this fascinating.) While taking a test that measures attention via sound in concert with visual, my visual performance dominates by a margin of 70 visual 55 auditory, however isolated the scores are similar. This indicates something i had often remarked, that i feel as if ALL my senses are set too high, and if multiple channels of strong stimulus try to force there way in, one input channel may narrow or shut altogether. A great deal of "panic attack" states (states of extreme pain of discomfort) often immediately manifest in situations where this is unavoidable.
This may indicate that, far from ADHD as thought by doctors for my entire life, that rather then being "spacy" as the doctor said or having the problem of daydreaming of inability to focus, i am simply RIPPED away from a primary task if a powerful external stimulus hijacks my attention. A very odd development indeed. I may have a future as a test subject. Which i suppose is the only future i could have imagined for myself years ago without scoffing.
"Yep. That's more likely then me getting married or finding jesus. I'd believe it."
So doctor 2, ultimately ALSO diagnosed me as having Asperger's Syndrome, achieving my initial goal of double (possibly triple) verifying my condition to assure MYSELF first, that i was not attempting to make excuses for myself, and that rather, this is real, scientifically verifiable, and the truth of things in a way that i am isolated from as a variable.
No bias. No mistake. No self. diagnosis. No bullshit. Goddammit i said it when i was a boisterous teenager and i'll say it now.
"I am the truth."
There is no need to revisit this question and add to my own cortisol and personal anxiety, i just need to go through the stages of grief and get to the end. There is no way around this, or through it, it is, terminal, chronic, unavoidable. All i can do is make peace with it, embrace my original, intuitive model of coping which is, to outlast, to endure, to be made of tougher stuff then everyone else so i can survive this uneven weight that i am forever saddled with.
I am the truth. That is to say, i am myself. I am who i say i am. I am what i have always advertised myself to be. I have never lied about it. I have occasionally overstated myself, as dramatic lisence and the heart of a poet is want to do, but i am genuine.
I am sincere. If that remains to be a thorn in the paw of the everyone i encounter in the world forever, then it must be. There is simply no other path for me.
I should feel freed. one road completely erased. No more perilous fork to ponder. No more time to stand motionless, enrapturing the self in paralysis by analysis. There is only one way to go now. And it's just as i always suspected. Just as i'd FEARED. Now it's just me, walking forward for all time, like the living dead. Imbued with strength of motion, but devoid of purpose, able to shamble on long after the head and heart are rotted through.
Without a house to save for, without a future to hope for, without some feeble dream of a wife and children to sustain my present,
without all the mooring that keep things such as us living.
The 2nd doctor remarked that some of tested revealed a sense of profound hopelessness, and suggested to screen for suicidal ideation. BUT, she remarked "I just don't see that in you."
The paper has no emotions, the human, does.
Something inside me, both sad and petulant smiles.
The paper was right.
Only a day ago, did i finally get the absolute last nail in the just barely proverbial coffin.
Yesterday punctuated yet another round of psychological testing, intelligence testing, and various other paperwork looking for markers of my condition. I don't take anyone's word for anything, so i took it upon myself to seek out a differential diagnosis. I had the best practices diagnostic manual for autism in it's most current iteration sent to my apt in it's entirety from the governing state body (Dept of mental health) and it suggested a person of my age invalidates most convention testing, leaving the best course of action to be a comparative approach utilizing multiple doctors and diagnostic measurements. State medicaid doesn't exactly cover that manner of thing, but the loopholes allowed for me to achieve as close to it as i could hope for with such limited resources.
Doctor 1 was a psychologist with 20 years of experience and 3 autistic children herself. While i feared bias, i also recognized that she has more experience witnessing behaviors and symptoms then most anyone i'd ever heard of, so i valued her opinion. She was the first to complete the process, and the one whom initially confirmed me as ASD (aspergers syndrome)
I suppose before that there was the informal evaluation i had from the state to find out if i was eligible for state insurance under a disability diagnosis.. Which confirmed i was eligible for free insurance under disability status, but did not confirm to me personally, WHAT that status was, so that may actually be the FIRST, though it may be something else.... no idea what.
Doctor 2, was more methodical then the first, approaching it first as a clinical psychologist, with a battery of tests, information taken from someone who knows me (rachel) self reporting, iq tests, mortality tests, attention tests, focus tests, motor skill tests, and on and on. My iq tests came out higher then those they compared against (8th grade tests retrieved from old school records) my comparative test of self reporting (i filled out and same questions then filled out ABOUT me by rachel) were relatively similar in curve, however i reported all the effects on myself at 2 to 3 grades higher of intensity then rachel reported while observing me. That seems quite sensible. My experience being more immediate and visceral then a bystanders.
I demonstrated some overlapping symptoms of ADHD (reported restlessness, both self reported, test indicated, and observed) however it is odd in how it manifests based on test data. It appears i have a great deal of physical restlessness (i am figdety and very often uncomfortable) but great visual attention (and ability to process data sets rapidly switching without being confused, with counter indicates ADD or ADHD (the doctor finds this fascinating.) While taking a test that measures attention via sound in concert with visual, my visual performance dominates by a margin of 70 visual 55 auditory, however isolated the scores are similar. This indicates something i had often remarked, that i feel as if ALL my senses are set too high, and if multiple channels of strong stimulus try to force there way in, one input channel may narrow or shut altogether. A great deal of "panic attack" states (states of extreme pain of discomfort) often immediately manifest in situations where this is unavoidable.
This may indicate that, far from ADHD as thought by doctors for my entire life, that rather then being "spacy" as the doctor said or having the problem of daydreaming of inability to focus, i am simply RIPPED away from a primary task if a powerful external stimulus hijacks my attention. A very odd development indeed. I may have a future as a test subject. Which i suppose is the only future i could have imagined for myself years ago without scoffing.
"Yep. That's more likely then me getting married or finding jesus. I'd believe it."
So doctor 2, ultimately ALSO diagnosed me as having Asperger's Syndrome, achieving my initial goal of double (possibly triple) verifying my condition to assure MYSELF first, that i was not attempting to make excuses for myself, and that rather, this is real, scientifically verifiable, and the truth of things in a way that i am isolated from as a variable.
No bias. No mistake. No self. diagnosis. No bullshit. Goddammit i said it when i was a boisterous teenager and i'll say it now.
"I am the truth."
There is no need to revisit this question and add to my own cortisol and personal anxiety, i just need to go through the stages of grief and get to the end. There is no way around this, or through it, it is, terminal, chronic, unavoidable. All i can do is make peace with it, embrace my original, intuitive model of coping which is, to outlast, to endure, to be made of tougher stuff then everyone else so i can survive this uneven weight that i am forever saddled with.
I am the truth. That is to say, i am myself. I am who i say i am. I am what i have always advertised myself to be. I have never lied about it. I have occasionally overstated myself, as dramatic lisence and the heart of a poet is want to do, but i am genuine.
I am sincere. If that remains to be a thorn in the paw of the everyone i encounter in the world forever, then it must be. There is simply no other path for me.
I should feel freed. one road completely erased. No more perilous fork to ponder. No more time to stand motionless, enrapturing the self in paralysis by analysis. There is only one way to go now. And it's just as i always suspected. Just as i'd FEARED. Now it's just me, walking forward for all time, like the living dead. Imbued with strength of motion, but devoid of purpose, able to shamble on long after the head and heart are rotted through.
Without a house to save for, without a future to hope for, without some feeble dream of a wife and children to sustain my present,
without all the mooring that keep things such as us living.
The 2nd doctor remarked that some of tested revealed a sense of profound hopelessness, and suggested to screen for suicidal ideation. BUT, she remarked "I just don't see that in you."
The paper has no emotions, the human, does.
Something inside me, both sad and petulant smiles.
The paper was right.
Monday, April 9, 2012
Expository Exhaustion
One of
the biggest reoccurring problems in my life having to do with my disorder, is
directly related to having to talk about it.
If your similar to most any sort of person at all, chances are you have run into the problem of having
to explain something to someone that just does not understand. I feel like it's a relatively ubiquitous experience.
Most of
the time, when it comes to social things ("You shouldn't say that.")
That guy is me. But all the other times,
for ME, that guy/girl is YOU.
It
happens to everyone. You try to explain your political position to someone who
inquires, but they really only asked to be polite and wish you would shut up.
You get dragged into a discussion about finances, or politics, or pop culture,
or *sigh* RELIGION, and feel sweat beading and rolling down your forehead and
that familiar warmth in your throat that reminds you of your growing
exasperation.
No manner
of explanation seems to be good enough. Be it carefully thought out and rigorously fact
checked, or emotional and profoundly felt, or hastily babbled out over too much
caffeine in one of many government approved meth dens (starbucks) dotting the
landscape.
I hate
the cliche' of it all. I HATE that the incredibly STUPID cliche' comes back
around here and dominates.
"You
just don't understand."
The
statement is a non statement, a non sequitur. By itself, it means nothing. It
is tendering your resignation to the futility of trying to codify the
ineffable. It is a face contorted by
depth of emotion and words reaching it's finale via burst blood vessels in the
temple and both eyes, achieving nothing, before the curtain falls, and the
audience shuffles out, irretrievably vexed, and there is nothing either of you
could have done to achieve a better result.
Imagine
my side of this. Try to empathize with someone who has an obscenely heightened
grasp of language, trying to explain WHY that does not mean i am a NORMAL
person who is slightly smart with words and what it means to be on the autism
spectrum to a person who has a one dimensional understanding (or no understanding at all) of what autism
means.
You would be welled served to walk away from that conversation 10 times out of 10. It's valueless for both parties. However social convention dictates i at least
try, otherwise it is perceived that i am being some condescending holier then
thou asshole, even if i already know the end result. If you know nothing good can come of it, the
logical course is to abstain from the conversation is it not? I am trapped within illogical precepts that
bind me up.
A
lose-lose situation for me. How can this
be remedied? How can i hope to make
lemonade from this particular cart of lemons?
I have not yet come to a conclusion. Thus far it seems as though i have
two equally unappealing choices:
Disengage
utterly. Avoid interaction that leads me into having to have this conversation
(lie) to achieve that end (which i am exceedingly bad at, almost completely
unable to do) which leaves me feeling sad, lonely, hopeless,and burned out.
Ram my
head into a brick wall. Which leads me to this end... "The definition of insanity is doing the
same thing over and over and expecting a different result." -Albert
Einstein (note this quote is widely attributed to Einstein, but that is controversial) So. I can keep trying. As my
perseverate nature tends to favor, knowing that there is no appreciable end in
store for me. If the numbers are right,
then i am .1% and i cannot reasonable expect, as a scientifically minded man,
to run into that in my daily travels. It is far more reasonable to assert that
i will NEVER run into like minded people, ensuring my two equally unfavorable
options remain as my only options.
This is the difference between someone on the spectrum, and let's say just an antisocial personality. I WANT friends. Honestly. I enjoy good conversation, it's one of my favorite things in the world. To be challenged, to be stimulated, to have an open and unfettered dialogue and peer into the minds of others. I don't WANT to be alone, don't strive to be cooped up in my apt and have no friends (which at 31, i still have no lasting friends.) but my condition seems to impart some odd characteristics that disallow these kinds of relationships to form for me. Of course i have tried my hand at faking, many, MANY times, but those relationships are unfulfilling and ultimately fail. Eventually the real me coming beaming through the cracks in my expressionless mask and then it always comes back to "I don't like that guy.." why? "I don't know."
While having tried a dizzying variety of masks and techniques over my life, when the faking gambits work, they only allow me safe passage so long as i keep my mouth mostly shut. When i'm honest, and i TRY to explain, well... it gets old for me is all. The hope, the effort, the disappointing conclusion. Being fired from every job, being dumped by every date. All the while just reciting a memorized catalog of what you need to know about me before you know me. Exhausting. For others too, i'm quite certain. It's not as if i'm completely unaware after all this time. I know i have that effect on people. The word they always used to describe me was "Intense." Which is to say, a catch-all for quite a few veiled negatives. More accurately i surmise the words they meant were "Overbearing. Frighting. Intimidating. Condescending (i get that a lot), talks to much, asks too many questions, relentless." To name a few.
I don't mean to be, "intense." very little of personality is intentional. My mind is ME, there is no separating them. I AM my brain, and i don't believe otherwise. I don't believe in free-will these days, i believe your conscious mind is a tiny pinhole of light poked into black shades over your eyes and the rest of what you do, want, say, feel, is already decided for you. I could write 10 pages on the illusion of free-will, but that is another topic. My girlfriend said to me outright "Can you be a little less "You"?"
The philosophical implications of that request are staggering! Well.. "If you consider the teaching of.,,," but seriously, I don't think i can. I am 1, and i cannot subtract from that. I cannot compartmentalize or meter my personality. I can not be, 80% me or 45% me. I cannot even wrap my head around such a question. She of course wanted me to be less "Intense" but alas, i am who i am, and i have already spent my entire life having to defend that, having to defend my brain, my personality, things i never had control over or asked for. I can't keep apologizing for what i had no hand in creating, and i'm not sure i can keep explaining.
I know that to stop, is to give up all hope. Admit defeat once and for all, and cut my losses from the human race. How much longer can i make it in this marathon before falling on my face and being dragged until it's finally over?
..........
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