The Opposite of Love

August 1, 2006 at 5:05 pm (Autieparenting, Autism and religion, Autism demonized, Hipocrisy, Perseveration)

Counterintuitive. This is a word that I started perseverating on a couple of years ago. I can’t remember for sure why I started thinking about it, but I think I must have heard it on the radio while driving. I do remember wondering why this word stuck with me above all other words at that time. I thought, maybe it was because it had so many syllables, or maybe it was the meter or cadence of the word that made me want to think it over and over again, like a hit song with a good hook. I soon realized, however, that polysyllibification and rhythm were not necessary for word perseveration to take place, because shortly thereafter the German words schadenfreude and fisslig took the place of counterintuitive. I liked that the name Freud was contained within schadenfreude, and I thought about how deliciously appropriate that was, even though I generally don’t put must stock in Freud’s psychoanalytic theory (except recently I started having a lot of symbolic, very Freudian dreams, and that’s starting to make me wonder a little). Fisslig (which, if I recall correctly, means something to this effect: “a state of flustered incompetence induced by the condescending scrutiny and assumption of incompetence by another”) was offered up by my friend Andrea, who has a knack for finding words (even if she has to borrow them from another language) to describe thoughts and feelings I’ve had that do not have any correponding words in the English language.

Andrea is also the one who theorized that perseverations never die: they just lie dormant. Under the right circumstances (time, money, something that trips that switch again), the potential is always there for the perseveration to be resurrected and enjoyed once again. I can’t prove the theory to be correct, but I have experienced this phenomenon enough times to believe that it is true, at least for me–and Andrea. And if it is true for activities, it must also be true for words, because this morning the word counterintuitive flooded my thoughts again as I was listening to a very familiar song. What happened this morning was a phenomenon that I’ve experienced, for example, when reading a very familiar Bible passage. I will read some verse that I must have read hundreds of times before, when suddenly I will “see” something in it that is completely different, completely interesting and new, as though I had never read that verse before.

I was driving out of the Toyota dealership with my autistic son Ben in the back seat of a rental car. My car was in the shop getting an oil change, and I was not about to wait around for it with Ben in tow. So as I was pulling out of the lot I started flipping through the radio stations and noticed that they had been saved to button numbers by someone else, and I didn’t like any of the stations (all hip-hop and rap, which I can only tolerate about 1% of the time, and a gospel station that was getting bad reception).  So I decided to manually find the oldies station (you know, songs from the sixties and seventies…um, yeah), and a song I really like came on: Let’s Get Together by The Youngbloods. I was feeling upbeat and groovy, and so I started singing along with the song. Ben was in a bad mood, however, and he kept making bad-mood noises that were ramping up and competing with the song. I found myself in the awkward situation of snapping at Ben for making so much noise during my love-in of one.

C’mon people now,

“Eeeahh, ahh, ahh…”

“Ben? What’s wrong?”

Smile on your brother

“Ee-yeeeaaah, aah, eeh, eh!!”

Ev’rybody get together

“Ben! What do you want?”

Try and love one another right now

“Weeeh-aaaaah, ooh, ooh, eee-yeah!!!”

“Ben! Why are you making so much noise? Stop it, already!”

So there I was driving along, feeling guilty and not all that groovy anymore, and thinking about how ironic that whole exchange was, when this part came on toward the end:

If you hear the song I sing,
You must understand
You hold the key to love and fear
All in your trembling hand
Just one key unlocks them both
It’s there at your command

At first I was thinking, “I like that verse. I think I’m going to put that in as a signature in my Yahoo account.” But nanoseconds later, I started thinking: “Whoa. Wait a minute. Did they just say ‘love and fear’? Love and fear. That sounds familiar.” Then I started deconstructing the verse:

There is a single key. It’s in my hand. That key unlocks both love and fear. One key opens up two different doors. Or maybe it’s the same door. Maybe it’s the door to my heart. Why did they not say love and hate? Isn’t hate the opposite of love? Why love and fear? Where have I heard “love and fear” before in the same sentence?

That was when I remembered this verse from–you guessed it–the Bible:

“There is no fear in love; but perfect love casteth out fear: because fear hath torment. He that feareth is not made perfect in love.” 1John 4:18

And that’s when the word counterintuitive started playing in the background of my mind over and over again. I thought, “If anyone was asked ‘What is the opposite of love?’ the answer would always be hate. It is counterintuitive to suggest that the opposite of love is fear.”

Counterintuitive. I agreed with myself that it was, but I didn’t know exactly why yet. I knew that it had something to do with the word epiphenomenon that I started perseverating on the night before, after reading about it on Autism Demonized. I began thinking about illusions and distractions from true phenomena, whereby maybe most people have a tendency to mistake epiphenomena for phenomena, and how that can relate to other things in the world too, but ultimately I was forced to push all these thoughts aside because I found it frustrating that I could not write about it while driving around doing all sorts of mundane errands. Ben needed his allergy shots, my vacuum needed bags, and my other autistic son David needed a bottle of Coke. And I do mean “needed.” I also had to take David to see the psychologist in the afternoon for an evaluation necessary to apply for additional services outside of the school district, and thoughts of having to go through the interview made it hard to think about much of anything else. After that interview was over, I dropped David home so he could resume playing Sonic the Hedgehog on Sega Dreamcast, which had been on pause the whole time we were out. I paid the babysitter and took Ben with me to go get my car back from the dealership. That was when I started thinking again, and thinking so hard actually that I actually got lost, which doesn’t happen very often. I tried to backtrack and find the other road but I ended up on some unfamiliar side streets going in the wrong direction. I hailed a woman on the street, telling her I was looking for Easton Road, and she ended up being very, very Aspie-ish which gave me some comfort for some reason. Her directions got me as far as Glenside Avenue, and I guess the Force led me back in the right direction after that.

If it is true that fear is the true opposite of love, why would “hate” be the almost universal response to the question, “What is the opposite of love?” Could it be that people are mistaking the epiphenomenon for the true phenomenon?

On the Autism Demonized blog, Ballastexistenz posted a quotation, attributed to Dr. Michael Goldburg, from the film Living the Autism Maze:

How can we have this rare misfortune become an epiphenomena [sic] threatening to overwhelm our school and social systems, while destroying families across this country and around the world?

Ballastexistenz looked up the word epiphenomenon and rightly commented that this word does not make sense in this context. Definitions of epiphenomenon:

A secondary phenomenon that results from and accompanies another

A secondary phenomenon that is a by-product of another phenomenon

I believe that the author of the above quotation was trying to amplify the word “phenomenon” by erroneously adding “epi,” instead of “pan” (e.g., the way epidemic is amplified to pandemic). Since “pan-phenomenon” is not a word, the writer fell back to the real word “epiphenomenon,” which is probably not what he meant. (That is, unless he was implying that the phenomenon is the mercury and the epiphenomenon is the autism; but that could be the topic of another, well-worn discussion.)

Could it be then, I wondered, that hatred is “merely” a secondary phenomenon that is a by-product of fear? Could it be that the things people hate about autism, and what seems to be a hatred of autism and autistics, is really at its root a fear of autism and autistics, and a fear of encroachment upon oneself and one’s identity by the misunderstood entity of autism? Could it be that if the uncertainty surrounding something about autism were removed, a lot of the fear, control, and hatred of it would be removed also? I think back to all the things I have ever felt resentment (a lesser form of hatred maybe) about autism, and these are a few things that come to mind: poop all over the place, being pinched and bitten, not being able to go many places or do many thing that other people take for granted, not having any normal experiences with my children’s schools and teachers, stress on marriage. But as these things start resolving themselves one by one, I now think that if only I knew at the time that “poop all over the place” would end on such-and-such a date, I would not have been so resentful at the time. What I needed was an end-date to look forward to, and then I would not have been so afraid that it would never, ever end. The helplessness that comes from feeling like a certain thing will never end breeds fear and resentment; ultimately, if left unchecked, it can breed anger, hatred, and murder. That is why Jesus said if you hate your brother in your heart (i.e., angry with him without cause, feel he is a fool) you are in danger of judgment because you have already murdered him in your heart. Hatred and dehumanization are only one step away from murder.

On this same blog, Gryphyn was criticized for demonizing autistics in a thread called Are You Neurotypical. The criticism was cross-posted back to the thread, and instead of engaging in mature dialogue Gryphyn responded in this way:

[AB] is a fucking moron. I’m not demonizing autism, I’m demonizing people who think having autism is ‘cool’. Get a clue, fucking public school rejects.

My response to this extreme nastiness was as follows:

When confronted with that “bad idea or notion,” those who perpetrate it can be seen to convulse and emit a strange string of denials and ad hominem attacks. This was posted on that site after Ettina posted:

“[AB] is a fucking moron. I’m not demonizing autism, I’m demonizing people who think having autism is ‘cool’. Get a clue, fucking public school rejects.”

He says he is not “demonizing autism.” He is merely calling autistics morons and rejects. There may not be any spiritual component involved here, but the hatred is transparent.

I almost forgot to mention that by cursing and calling ALL (by the fact that he used the plural at the end) autistics morons and rejects, this writer seeks to elevate himself to the status of “cool,” which is the kind of thing he seems to be denouncing.

I said, “the hatred is transparent,” naming it for what it “seemed” to be on the surface. In the last paragraph I started to unearth what was really going on, but I stopped just short of a conclusion. I see now that what drives people like Gryphyn to post things like this is fear. He revealed his own fear, whether he wanted to or not, by talking about the status of “cool,” which is clearly what he desperately wants to be or else he would not be concerned about other people’s coolness or lack thereof. He cannot maintain his own coolness without insulting an entire population. He cannot even see the self-contridictions in his writing because he is so blinded by his own self-protective, identity-protective fear of losing his cool status. I’d say this way of thinking is a slippery slope, but actually Gryphyn went from zero to sixty the moment he was questioned about his statement, so I guess for some people hatred is felt very easily and very fast.

And yet, even though I believe that the end result of fear is murder, I do not believe that murder can be explained away or excused through a compassionate look at the “trembling hand” of the mothers and fathers who held that key and instead of unlocking love unlocked fear. By unlocking instead of controlling fear, they opened up a Pandora’s box and allowed their fears–natural fears that probably everyone experiences–to spin wildly out of control. They betrayed their faithlessness in doing so. Faithlessness in God first, but also faithlessness in themselves to persevere as parents and faithlessness in their children to grow and mature at their own pace, leaving many of these distressing aspects of autism behind them.

People believe that the opposite of love is hate. Hatred kills, so hatred must be associated with action, power, and strength. Love nurtures, so love must be associated with passivity, meekness, and weakness. In reality, at least for me, the opposite is true: 

For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind. 2Timothy 1:7

The reason killers kill what they fear is that they have a spirit of fear that makes them believe falsehoods. They have no faith, no patience, no perseverence, no longsuffering, no understanding, no wisdom. They allow themselves to be cornered by their own fears, and everyone knows what happens to a cornered animal: they have a fight-or-flight response. Those who fear autism have chosen to fight it because they can’t fly away from it. Some have joined the cause to Deafeat Autism Now and Cure Autism Now, others have chosen to fight with words and images, such as the members of Autism Speaks, who have portrayed autism through their own fearful lens in Autism Every Day. Members of Autism Speaks have not been content to wallow in their own fears about autism. True to the adage that misery loves company, they have sought to envelop the viewer in their own fearful world by projecting their homicidal thoughts onto them. If the viewer identifies with Autism Speaks and the “gut-wrenching” tales of suffering, the viewer will automatically identify with the inner thoughts, now publically spoken, of some of the members. By now this notorious quotation uttered by Alison Tepper Singer is widespread in the autism activist community:

“I remember that was a scary moment for me when I realized I had sat in the car for about 15 minutes and actually contemplated putting Jody in the car and driving off the George Washington Bridge. That would be preferable to having to put her in one of these schools.”

Others, such as Karen McCarron, have taken that last, awful step and have actually murdered their autistic children to “end her pain and her daughter’s pain.” I doubt that, if asked if she had hated her daughter Katie, Karen McCarron would answer in the affirmative. In her mind, I suppose, she was committing a mercy killing. Her fears for herself, her family, and her daughter overcame her and caused her to do the unthinkable.

If perfect love casts out fear, what about imperfect or misguided love? I think it leads to disaster. I leads parents to take all kinds of chances with their children, maybe even kill them, in the name of love. Yesterday I saw a woman with two autistic children interviewed on the first of a five-part series called Inside Autism on CNN. To paraphrase because I can’t find the transcript, she said she has tried everything to help her autistic children, and when something didn’t work, she tried something else. This upset me because it seemed almost like a game of Russian roulette. If the therapy doesn’t work, then fine; no harm done. If the therapy does work, all the better. What if the therapy not only doesn’t work but harms or kills? That is the trouble with “trying everything” out of fear mistaken for love.

The autism activist community has been trying to defeat this Goliath (represented by DAN, CAN, Generation Rescue, and Autism Speaks just to name a few) by using reason and expressing righteous indignation, but Goliath keeps growing bigger and stronger, backed by corporate sponsors, Hollywood, science and research, and some members of the government. Even though I feel like a tiny David in this battle, I wish that I could just lodge one tiny thought-seed into Goliath’s heart, not a stone into its head to kill it. If I hate it and kill it, I am no better than they are, really, and I am just betraying my own fear of it. If I could do anything at all to transform it or convert it, it would be to plant the idea that to truly love is to have true power, and that we already have the means to unlock unconditional love toward our children, if only we will use the keys we are holding in our hands for the right purpose. God gives everyone a free will to choose between life and death, good and evil, love and fear. I would much rather win the Goliaths over to this point of view–to choose love–than to keep answering their fear and hatred with righteous indignation and getting nowhere at all. 
 

Advertisements

21 Comments

  1. Jannalou said,

    You are right.

    There must be some way to get the message out besides blogging, though. We really do need some kind of positive media attention. Jypsy & Alex started it, I think. It needs to keep going and get bigger, though!

  2. Ballastexistenz said,

    Thank you for writing about this. I’ve been trying and haven’t been doing a great job of figuring out how. So I’ve been ending up writing about less important stuff, because I just can’t figure out how to get words around the important stuff right now.

  3. natalia said,

    This is a very good post, it made me think a lot.

  4. qw88nb88 said,

    Yea veriy yea, hate indeed stems from fear.

    I have some thoughts on this around somewhere already; I’ll track them down after I get back from summercamp and post them on my blog…

    andrea

  5. Autism Vox said,

    Could it be that the things people hate about autism, and what seems to be a hatred of autism and autistics, is really at its root a fear of autism and autistics, and a fear of encroachment upon oneself and one’s identity by the misunderstood entity of autism? Could it be that if the uncertainty surrounding something about autism were removed, a lot of the fear, control, and hatred of it would be removed also?

    You’ve got a lot in here—these questions stand out. I am also thinking of a quote from George Eliot’s novel Daniel Deronda: “Take your fear as a safeguard.”

    Love and hate are both strong, strong feelings—passions—two sides of the same coin.

  6. Sharon said,

    Thanks for an excellent post.

    Autism appears to be getting lots of coverage in the US right now; what with the CNN and ‘Town and Country’ magazine articles. The dratted Autism Speaks organisation is benefiting from these reports.
    What can we do against such big-time establishments?

    I’m not even close to a ‘David’ in this, more like David’s little cousin whom he allows to hang-out with him 😉

  7. Bonnie Ventura said,

    Lisa, I always find your posts very thought-provoking; as Kristina wrote, there’s a lot in here. Loving one’s enemy is part of the philosophy of nonviolent resistance, and to do it effectively, it is indeed necessary to understand the enemy’s fears.

    Janna, you’re right that we need to do much more than blogging; we need to find powerful allies. But the trouble with that is, although there are successful autistics, many of them are “in hiding” to protect their career and family, all the way up to Bill Gates. The way things have been going lately, I don’t expect to see them coming out any time soon (would you have wanted to be a prominent Jewish activist in the early days of Nazi Germany?) I think Autism Hub is on the right track by appealing to parents whose children have been diagnosed; because these children are already in danger from the mass hysteria against autism, the parents have nothing to lose by joining us, and maybe we’ll attract some parents who have media influence.

  8. Jannalou said,

    So basically, we’re like the Underground.

    Hrm… I kinda like that…

  9. Trudy said,

    In the first hour after reading this essay, I felt incredible – really and truly inspired. But then I went to sleep and woke up the same mediocre fearful blob I’ve always been.
    The fear is a habit of thought – probably it’ll take forever to root
    out. But at least you’ve shown a way forward. Having a name
    for it allows me to knock it down when it comes up (X times a
    minute). Got over a strong visceral response to people that my dad
    once helped me to identify as racism by having a name for THAT
    feeling. After years of response-acknowledgement-correction (X times
    a day), the negative visceral response (what I think of
    as “racism”) actually stopped. Thanks Lisa.

  10. willy said,

    I found that fear recognized holds no power. fear is an emotional response that we are taught and learned. in nature there exists no fear. the gazelle fears not the lion, fears not death, but is aware of danger and responds to danger approppriately under the circumstance that exists at the given moment. animals do not flee out of fear, they flee to survive a danger (perceived or actual) to their life.

    my dog is a hurricane george survivor from the florida keys. he was left by his owner chained to a house trailer and experienced wind, rain, flood, and all fury of george. he now seeks to snuggle into me when fierce winds and storms are about. he seeks the security he feels with me. does he fear the storm ? no. he nows that storms may injure, kill him based on his experience of hurricane conditions. learned response to danger of harm.

    if one teaches fear to children, children will fear. if one teaches the concept and reality of danger instead of the emotional response of fear, our children may better survive the trials and tribulations of life and growth and not succomb to emotional distress in place of thoughtful response to a given circumstance- dangerous or otherwise.
    fear of loss, fear of harm, fear of fear. this is not natural to any living thing. response to danger is natural. response with fear is not.

    fear and I are intimate friends. I know the power of fear is only the power I give it, it has no power over me if I grant it no power to control me, my thoughts, and/or my actions.

    pure love is the absense of fear. acceptence that what comes my way in my life is for me to respond to is the key to knowledge of love and fear. reaction based on fear is destructive and most energy consuming. reaction based on the reality of the moment void of fear (and the emotional responses based on and rooted in fear ) is empowering and energy is used to bring about change of circumstance.

    fear………..I know well, intimately, and completely. I now recognize it for what it is. I do not deny it its own existence and I do not renounce it. it is part of my learned reality except now I know when it is trying to have its way with me and suck energy and selfempowerment away from me. I recognize it for what it is- an emotional response that needs me to forget it exists in order to control.

    fear recognized holds no power.

  11. burntcherry said,

    This is a superb post, both in content and in writing style. It felt interestingly personal to me, as I have had some of the exact same word ‘obsessions’. But where it got even more interesting is when you mentioned g0ldberg — whom I know only too well and whom I often refer to as …… “Dr. Schadenfreude.”

    When I first read that quote by him on ‘Autism Demonized’, I concluded that he meant “pandemic”, a term he has used recently. He does have a well-known habit of mis-using words. BTW, I did find another example of his using epiphenomena right here –>

    “Perhaps a “new” Herpes related virus or retro-virus may be playing a role in some of this epiphenomena.”

    But what’s most interesting (for me) is how fear and hate played into my (unfortunate) experiences with “Dr. Schadenfreude”. He has been convinced he has “the cure” for well over a decade and he has tried for years to get a private company funded with OPM (other people’s money). One of his favorite laments, whenever he would get turned down by investors for not providing adequate buisness information in order to even begin monetary discussion, was: “THEY MUST JUST HATE KIDS!!” Another telling example is how he nearly refuses to use the word “autism” and when he does use it he always includes the comment: “I JUST HATE THAT WORD!!”

    He is the one who is the “rare misfortune”, not the beauitiful chidren he thinks he’s trying to “save”.

  12. qw88nb88 said,

    P.S. David psychobollox came up with that gem of a word, “disemparentment”

  13. zilari said,

    I think you’re precisely right about the role played by fear in the negativity (and that’s putting it mildly) associated with autism. Many people feel a tremendous need for certainty — certainty that they’ll be able to keep their job, that their child will walk / talk / toilet train by a partictular age, etc. I think that if more people acknowledged their need for certainty they’d perhaps be better equipped to face and deal rationally with fears. There are some things a person can be reasonably certain about, however, I’ve definitely felt more peaceful, self-accepting, and capable since coming to terms with an uncertain universe.

    Perhaps being autistic gives a person a bit of a head start at acknowledging uncertainty — at least in my case, I know that I was born into a world in which everything seemed random and novel, and I never expected certainty anywhere (and hence created it, or predictability and order, in small pockets of my own environment).

    Perhaps in facing the “Goliaths” of which you speak, all of us who seek to interact on the basis of love ought to consider our actions carefully. I would much rather change people’s minds and hearts than seek to hurt them. I do think people need to acknowledge their mistakes and admit when they’ve been wrongheaded about something but I do not think that any good comes from inflicting unnecessary pain or rejoicing when one’s enemy is hurting. (Not that anyone whose blog I read is such a rejoicer!) But of course, this doesn’t mean softening (or seeking to soften) messages that must be transmitted directly and completely. Experiencing a negative sensation at acknowledging a mistake is a good and normal reaction — the key is to let the acknowledgement prompt positive change and reflection rather than the erecting of additional defense mechanisms.

    Altogether, a wonderful post. However, I do think I should point out that one need not necessarily have religious faith or belief in any particular deity to act out of love and exercise good moral and ethical judgement. Not that you were necessarily saying this, but as an atheist who often ends up having to explain to people that no, I don’t need fear of eternal punishment to motivate me to be a good person (and I realize many Christians and other religious persons also reject a “behaviorist” approach to religion and take the position that being a good person is simply in harmony with God’s nature), I do think it’s important to acknowledge that some ethical truths and tenets of rationality are capable of standing on their own outside any specific doctrine.

    From my observation, good people are good people regardless of what they believe about the supernatural, and hate and fear-filled people are just as full of hate and fear regardless of their views on the supernatural. Whenever you have a work of literature that is in any way subject to interpretation, different people will end up with interpretations that reflect back on those people differently — and it is my impression that very fearful people tend to focus on very gloom-and-doom, Calvinistic interpretations of doctrine and that people who are devoted to love and logic emphasize those parts of doctrine that promote positive living and wisdom.

    To me, this reveals far more about the person than about the belief. I think there is plenty of positive wisdom available in most religious texts (and plenty of nonreligious philosophical writings), but only the people who are inclined to use this wisdom toward positive ends in the first place will find it.

  14. lisajeancollins said,

    Thanks to all who have posted thus far. Please forgive me if I don’t address everyone’s points all at once.

    Ballastexistenz,

    [Channeling the voice of a chipmunk] No, really, thank YOU!

    What I mean to say is, without your writings, this post would not exist so I guess you can say we wrote it together. I look forward to whatever you want to write about in relation to this, but in my mind everything you write about is “important stuff.”

    Bonnie,

    I think there is a book or something called “How to Talk so People Will Listen.” I’ve had my fill of the angst-ridden ranting of the autism activist community lately. Maybe I’m just in a bad mood or something, but it’s starting to sound like a lot of white noise. If it’s starting to sound like it to me (someone who agrees with the content but not necessarily [or not right now] the delivery), I’m wondering what it is sounding like to people on the other side of the fence who don’t agree with either. I never thought of it as “nonviolent resistance” but I guess it is, but not with respect to the alternative because to my knowledge the ALF is still not a terrorist organization 😉

    Andrea:

    After I wrote it, I was nervously pacing around wondering if it was you or David Andrews who said it, because I did remember the three of us trying to come up with a word. I will have to edit this part out and send the Bolloxman my deepest, most grovelling apologies.

    Zilari:

    Hi, and welcome. I am really so exhausted right now so I’m going to have to answer your comment tomorrow, because it’s long (I’m not sidestepping anything, I promise). What I want to say just for starters is that my posts are really personal and I can’t help at times cross-pollinating my Christianity with my thoughts on autism from time to time. At the time I was writing this, “Faithlessness in God” was all I could come up with, which is not to say that atheists have a greater potential to become killers. My best friend and husband is an atheist, so I have first-hand knowledge of the world “Inside Atheism.”

    😉

  15. zilari said,

    lisa jean: Thank you for your thoughtful response — I just got back from a trip myself and completely understand being exhausted! I actually figured that you were speaking very personally and I do respect that — it was indeed the “faithlessness in God” comment that I was responding to, and I tried to do so respectfully. Hopefully I managed this. I do actually find the Bible quite fascinating and I do think that as a species we are fortunate to have preserved the writings of people who lived so long ago, since reading them can offer quite a bit of perspective on our own lives and insight into the lives of ancient peoples.

    It really amazes me how we have come so far technologically and ethically in some cases, and yet also how some truths and wisdoms about living were indeed discovered prior to the development of most things all of us tend to take for granted (telephones, roads, industrialization).

    Sorry about the tangent, but I actually am very interested in this sort of thing. I don’t mean to clutter your blog but I do thank you for writing!

  16. lisajeancollins said,

    Zilari,

    I’ve been thinking about how I could have worded this differently. I don’t want to change the text, but after “faithlessness in God first” I could add this:

    (or faithlessness in any truth or power bigger than oneself)

    Because, really, at the core of this phenomenon–whether you believe in God or you don’t believe in God–is narcissism. Narcissism prevents a person from stepping outside his or her own needs and views, even for a moment, to gauge them against those of others, or even against a higher power or higher concept. Narcissism prevents a person from seeing a big picture or a different picture, and it wraps people in a cocoon of self-righteousness and pride on the one hand, or “suffering martyr” on the other hand.

    I know that atheists are perfectly capable of believing in powers (a power doesn’t have to be a deity) higher or bigger than themselves, and I know many atheists who behave in more conventionally “Christian” ways than many self-professed Christians.

    For me, since this piece was from my own vantage point, to murder my child out of despair would be equal to “faithlessness in God.” For me it would be saying that God doesn’t care, has no idea what is going on in my life, does not have things under control, did not have anything to do with the creation/life/development of this child, cannot change the things that seem unbearable to me (or to my child), is impotent and might as well not exist.

    Ms. McCarron, we must all remember, freely admitted that she *also* murdered her daugther to end her *own* suffering. She did it for herself, and she tried to cover up the evidence, hoping she would get away with it. Putting the criminality aside for a moment, what happened here is a woman saying that she will no longer put up with suffering in her life. She had the power to remove the suffering, and she did it. I don’t know how atheists view suffering, but most Christians believe that suffering is an integral part of being a fallen human.

    To me there is real suffering (I like the word “longsuffering” because it implies a steady state of things not going well along with patience to bear it and hope that things will get better, rather than some kind of acute tragedy that must be stamped out; but anyone can call it what they will, whether “suffering” or something else) but then there is conflated, narcissistic suffering. Narcissistic suffering is the kind that, as someone put it really well somewhere in reference to Alison Tepper Singer–thanks, whoever you are–makes little madonnas out of mothers of autistic children, and the madonna sucks up a strange kind of veneration from others, and feeds off that veneration.

  17. zilari said,

    I see what you mean about narcissism, and that makes a lot of sense. I definitely don’t hold any illusions that there are no “powers” greater than myself — I can’t even imagine what it would be like to think that way. The “higher powers” I acknowledge are those of ethical principle, of respect for fellow sentient beings, and of the numerous complex systems each and every one of us depends on utterly for the very fact of our existence.

    I attended an ethics conference earlier this year, and one of the speakers began his talk by asking everyone in the room to think about the fact that they were breathing, and of nothing else. The point of this exercise was to demonstrate that nobody exists fully independently of the environment — that there is actually a fairly narrow set of variables in place that permit our existence. A simple concept, perhaps, but one that is definitely illustrative of the fact that everyone is both dependent and responsible as a consequence of being real.

    Self-respect is a fine thing, but nobody has the right to demand a life free of any discomfort or inconvenience — this doesn’t mean “life is suffering” or anything so maudlin, but rather, that it is important to keep in mind the fact that one needs to be prepared to deal with difficulties rationally and in a manner that keeps the needs and rights of others in mind.

    As a non-Christian, I don’t believe that humans are “fallen” or that suffering is some sort of punishment, but rather, that suffering is a signal that ought to be a call to reflection and action. And the purpose of that reflection should be to make sure that the action taken is loving, rational, and ethically sound. There’s also the fact that often when people think they are “relieving suffering” they’re actually just mitigating a temporary and acute source of discomfort — in the long run, they’re actually making things far worse for themselves and for everyone else.

    Ms. McCarron’s act was so utterly self-serving I can scarcely believe it — she didn’t just deny life to her daughter, but she took it upon herself to take a daughter away from her father, a granddaughter from her grandfather, and a sibling from her sister. Not only is she now suffering more (most likely) with having to live with the consequences of what she has done, her whole family is suffering for Katie’s absence.

    Taking away another person’s right to exist for the sake of one’s own convenience is both irrational and immoral, and these murderous (or murder-idealizing) autism parents are most definitely quite narcissistic in their feeling that somehow they deserve a particular kind of child or a particular kind of life. If someone chooses to have a child, they need to be fully prepared to accept that that child is an autonomous being and not a lifestyle accessory.

  18. zilari said,

    Or rather, the perception of suffering ought to be a call to reflection and action. There are plenty of cases in which someone merely thinks someone else is suffering, but what they’re really feeling is their own discomfort at having to deal with that other person for whatever reason.

  19. Autiemom Speaks Out » Don’t Ruin it For Me said,

    […] As I usually do when I get very enthusiastic about something, the next thing I did was to post the video to my group and to a few blogs. I wanted everyone to see this video, because we were all pretty much still reeling from the hurtful video called Autism Every Day. I felt it was “time for something completely different,” and so it was. Finding this video seemed really nice after just having written The Opposite of Love. It was time for the opposite of fear, and I was ready for it. So were some people on my group. Trudy was calling for “great big propaganda campaign” to promote visual images of autism along the same lines as this video, and Anne was getting her groove on: After seeing these videos and reading [The Opposite of Love], I’m committed to getting into a more positive groove instead of reacting to other people’s views all the time. You can’t really argue people out of fear or hatred. […]

  20. Mary Katherine Day-Petrano said,

    Is this a blog primarily for PARENTS of those with autism? That is the sense I get from reading the original thread and some of the comments here. Are any posters actual people with autism?

    I think there is a real mismatch going on between what posters who appear to be non-autistic parents think and project people with autism think vs. what people who actually have autism actually think, feel, and believe.

    Regarding the belief ascribed to people with autism that “fear is an emotional response that we are taught and learned,” perhaps that is how non-autistic (neurotypicals) predict an autistic person would react. But actually, emotions are quite impaired in people with autism. For one thing, and I can speak firsthand for myself, I do not understand language verbally as a default process, but in pictures of a pattern of letters or sentences or even paragraphs. I do not encode emotions with words, if any of the posters here can try to imagine what that means. I cannot read a majority of emotions I see others express, and even those I do recognize from the billions of patterns I have recorded in my photographic memory, I do not have the ability to predict what reaction will ensue from any such emotion of another.

    I also think far too frequently, educators and therapists rush in to medicate away the few emotions a person with autism does experience as the “best” means to purportedly control the odd behavorial problems inherent to autism; however, by ridding an autistic person of all ability to feel emotions, is a huge obstacle to maximizing the abilities of an autistic person. Have any of your parents actually taken some of these drugs prescribed to autistics, like Prozac or risperdal? A person on these drugs cannot experience any emotion. It is much easier to simply eliminate all emotions to control an autistic person than to work with the autistic person in a relatively drug-free state to teach that person how to control the emotions that are experienced. It is so much like learning to ride a horse — one gets run about somewhat out of control at times before learning how to control a horse. But one who does not mount-up the horse and RIDE, cannot learn to master the control.

    Which brings us back to this rather neurotypical concept that “fear is an emotional response that we are taught and learned.” My response is … not for a person with autism. Not at all, it does not work this way. In the majority of circumstances, an autistic person does not experience emotional fear or understand fear as an emotion. This concept of fear is really seen as one of the photographic pictures of a pattern than matches a certain constellation of facts that indicate danger. In response to which, say a bullet is fired at an autistic, the person would take evasive action to duck, take cover, or flee not out of emotional fear but simply to execute a safety manuever.

    I am not saying a person with autism has no ability to experience fear, but it is not experienced in the same manner as a neurotypical. For example, if a personw ith autism gallops a horse down to a 6’x6’6″ spread oxer jump at the rate of speed, impulsion, and forward direction known to be theoretically necessary to enable a capable horse to clear such an obstacle, there IS one split second about two stides out from takeoff where the jump is a greater height than both the horse and rider towering over and the thought crosses the mind “can a horse really go over, clear, and safely land on the other side of this enormous jump?” At this moment, there is no possibility to change one’s mind, because to chicken out would result in certain potential death for both horse and rider; rather the thought is more questioning one’s belief than fear, and requires the person to exercise mind control over the doubted belief. Generally, because an autistic person does not experience fear as an emotional response, an autistic person does not freeze like a deer in the headlights of a car like most neurotypicals.

    So I think when so many posters who appear to be parents of people with autism are expressing their understanding of fear as an emotional response of a verbal-style thinker, such neurotypicals should recognize this is not at all the away the autistic person sees the issue.

    Having said this, leads to the viewpoint of people with autism that does not regard fear as the opposite of love. Autistics do experience love, and as adults many can even fully experience intimate sexual relationships like marriage IF they are allowed to work with and understand the emotions they do feel and learn to enhance them.

    Regarding the idea narcissism is bad, perhaps for parents of people with autism, and surely in the examples given. However, it is actually advantageous for an autistic person to feel a little narcissistic, because to feel such confidence is to be secure in and like the person an autistic is for what they are. People with autism hear such a constant barrage of whines, complaints, and drivel from neurotypicals who *just don’t like* their autism, that a little autistic narcissism helps people with autism realize that a bully is a bully and it is okay if there are people who *don’t like* autism just as it is okay for a political conservative to *just not like* the politics of a liberal. It is a big diverse world out there, and people with autism deserve to fit in, which will never be accomlished if the autistic person him- herself does not inherently believe they can have hopes, dreams, and security in their own worth.

    On the issue of Christians vs. athiests, this is really not helpful to people with autism who have to personally struggle with having to overcome such disabiling conditions, no more than trying to make distinctions and pick sides between Republicans and Democrats, men and women, blacks and whites, or any other arbitrary division would *help* the success of a person with autism. A person with autism can come amongst any of us. The only distinction is autism itself.

    If there are other neurotypicals, whether they are the parents of a person with autism, a competitor, or a conglomeration that wants to “Cure” or eradicate autism, the problems is not the autistics but instead that of those who cannot learn to express healthy coping mechanisms for whatever it is that really turns them off about autism.

    Autistic people don’t want to be “cured” or eradicted. And we certainly don’t want our parents, caregivers, assistants, teachers, peers, or anyone else to take self-help upon themselves to stamp us out. I strongly believe that autism is one of two divergent evolutionary brain structures, and has a place in this world for all the incredible things only an autistic thinker can accomplish. Without the highly logical unemotional autistic prototype envisioned in Dr. Strangelove or Vulcan Spock, to quote another famous autistic, Temple Grandin, the rest of the neurotypicals would still be sitting around chatting in caves.

    And what about the BIG corporate push … well, imagine the cash cow profits that would be made by doping the HUGE numbers of autistic Americans with pharmaceuticals to “cure” them. Capitalism is what it is. Turning the millions of autistic Americans into drones of mediocrity to labor in factory sweatshops would make any capitalist salivate. But this is not the highest and best use of the many talents of people with autism.

    Finally, I think it should be pointed out that it is unlikely fear is the reason CAT, DAN, and so many neurotypicals resist autism in all its glory. The REAL reason is envy — the majority of neurotypicals KNOW they would not be able to compete for employment, power, or fame if they EVER let the autistic savant genie out of the bottle, level the playing field, and accord autistics equal opportunity to achieve the American dream.

    Some of you parents really need to talk TO your autistic children, not talk about what you think they feel, believe, and want. It would be an epiphany.

  21. David Brown said,

    I am an adult with Asperger’s syndrome, and I am posting in response to the suggestion of “ENVY” of autistic “savants”. I probably at least come close to savant status, and I have had many people (usually without knowing my diagnosis) say how smart I am. But I, myself, have never bought into it. What I have long suspected is that there is nothing I can do that an “NT” couldn’t do as well or better if he simply used the concentration and effort that I HAVE to employ. As for the prospects of savants, two things must be kept in mind: First, savants are specialists, just like scientists and professional athletes. It is as unrealistic to expect a savant’s abilities to extend to multiple areas as it would be to ask a biologist to design a nuclear reactor or a sprinter to play rugby. Second, savants, like autistics in general, are very sensitive to their environment. Any irritating or distracting stimulus (my “kryptonite” has always been tapping noises) could render one of us non-functional. (The film Rain Man egregiously glossed over these problems.) Expecting miracles from us is in the long run almost as harmful as ignoring our abilities.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: