April 30, 2008

  • don't tell me I'm broken

    from my private blog on May 23, 2007
    My psychologist wanted me to read anything I could find by Tony Attwood until our next visit, so I found The Complete Guide to Asperger's Syndrome at the library a couple of days ago.  They say the guy is brilliant, and yes, he's a good writer, but it's such a drag having to go over stuff that I must have intentionally blocked out, and now I'm having all these miserable flashbacks from my childhood.
    But here is a brief summary he wrote.

    From my clinical experience I consider that children and adults with Asperger’s Syndrome have a different, not defective, way of thinking. The person usually has a strong desire to seek knowledge, truth and perfection with a different set of priorities than would be expected with other people. There is also a different perception of situations and sensory experiences. The overriding priority may be to solve a problem rather than satisfy the social or emotional needs of others. The person values being creative rather than co-operative. The person with Asperger’s syndrome may perceive errors that are not apparent to others, giving considerable attention to detail, rather than noticing the ‘big picture’. The person is usually renowned for being direct, speaking their mind and being honest and determined and having a strong sense of social justice. The person may actively seek and enjoy solitude, be a loyal friend and have a distinct sense of humour. However, the person with Asperger’s Syndrome can have difficulty with the management and expression of emotions. Children and adults with Asperger’s syndrome may have levels of anxiety, sadness or anger that indicate a secondary mood disorder. There may also be problems expressing the degree of love and affection expected by others. Fortunately, we now have successful psychological treatment programs to help manage and express emotions.

    That's such a nice little nutshell.  Now, let's see how I'd summarize the rest of the world, from my point of view as a child, now expressed through my adult ability to verbalize these feelings.

    People of any age or size who pick on children who are different from them are greedy for power over others, selfish in their desires to force the world to conform to their own whims, and intolerant of any deviation from the way they believe the world should work.  They have no imagination beyond the stupid little boxes their brains are contained in.  Their obsessions with 'normal' and 'fixing' what's 'wrong' with other people show a lack of anything better to do in their own lives, and their inability to think about the consequences of their own actions beyond the next five minutes are mind bogglingly gauche.  People who think pink is the greatest and yak on their phones all day have something wrong with them.  People who are cruel to animals and little kids have something wrong with them.  People who lie to their loved ones and self medicate have something wrong with them.  People who go to elaborate lengths to get even with other people over trivial emotional issues have something wrong with them.  So don't tell me I'm broken and need to be fixed.  I live in a world of skewed humanity that I loathe to acknowledge, and I ache to escape it and find people who don't expect me to physically respond with a smile and a hug every time a holiday dictates that it's time to love each other.  The horrors of having to constantly self monitor and never relax while I am surrounded by people who frown at every move I make are enough to make me want to run away from everyone for the rest of my life, and I can never tell anyone everything that is in my head because they're too dumb to understand that I'm not the crazy one, they are.

    Please forgive me, on top of having Asperger's, I was raised by a mother with a very twisted form of Munchausen, and ignored by relatives who neither saw the truth of what was going on nor helped me survive it in any way.  Teachers tried to get my parents to get me to a psychologist from kindergarten on up through high school, but I NEVER got help of any kind.  Never.  I survived my childhood because I was able to believe I was the one who was ok, it was everyone else who had something wrong with them.  And that's actually one of the typical Asperger survival mechanisms, according to Tony Attwood.

    So if I seem bitter, it was those last two lines.  "There may also be problems expressing the degree of love and affection expected by others. Fortunately, we now have successful psychological treatment programs to help manage and express emotions."

    That and being picked on and bullied in school all my life.  Whatever this crap is about girls being less inclined to be diagnosed than boys because they are more capable of hiding and blending socially is just that-- a load of crap.  My weirdness was so blaringly obvious that nearly every teacher I had either asked me how my home life was or tried to personally encourage my mother to get me to a professional.  I attracted bullies and mean kids like a wasp trap attracts wasps.  These are true incidences.  A girl in middle school dumped stewed tomatoes off her lunch tray all over my white blouse and then tore my blouse grabbing me when I didn't respond.  A gang of tough girls chased me around the school yard and almost right onto my bus the last day before Christmas vacation.  A boy in high school broke my nose and glasses with a 90 mph dodgeball hit to my head.  Want me to go on?  The list gets pretty long.  And if anyone says any of it was coincidence or just bad timing or whatnot, I NEVER saw another kid go through any of the stuff on that list that I went through.  Not once.  I saw bad things happen to other kids, yes, but not with the consistency and maliciousness of what I went through.  Did my mom care?  I stopped bothering to even tell her.  Her response to ~any~ problem I had was to poke some more nasty junk down my throat.  Sometimes I threw up, sometimes I got fevers, one time I finally figured out I was being poisoned after I broke out in a very sore head to toe rash (that didn't itch at all but hurt terribly) and had to think fast how to make my mom believe I was swallowing those special pills she had to special order through a chiropractor's wife (it was a toxic metal), 2 pills 3 times a day for two weeks.  After one week, I really felt like if I took even one more pill I would die.  I was 14, I was diagnostically considered to have a cognitive disability but no one was aware of it at the time, but I knew my mom was killing me and that if I confronted her about it, it would get worse, she would find someone to help hold me down and force me to swallow those pills.

    I'm a big advocate of not 'fixing' the neuro-diverse.  Help, yeah, that's fine.  Not fix.  You wanna cure me, you're gonna hafta cut out parts of my brain.  If I survived emotionally intact (and I've tested out as 'emotionally healthy'), it's because I wasn't obsessed with my emotions to begin with.  If I don't like feeling something, I don't dwell on it.  I walk off and get involved with something else in my head.  For me, that is a functional survival mechanism.  They say Asperger's Syndrome is probably going to turn out to be one of the most common neuro-diverse diagnoses in the world.  Well, maybe that's how humans survived millenia of really tough times.  Maybe Asperger's is an adaptation to harsh and destructive social environments, because humans have been through wars and conflicts and government upheavals since civilization began.  People like me don't die of ennui and depression.  We survive it.

    Ok, enough of that.  I sound so aggressive, don't I?  ha. 

    That post was written during my first month with a psychologist.  He has been very helpful with several things since then, all of them involving how to better socially interact.

    One thing I learned which was very helpful was that aspies are easy to 'lead'.  When my doctor referred me to a neurologist for further investigation into occipital neuralgia, I came away frustrated that she completely bypassed my main complaint and tossed a prescription sample at me after only 5 minutes of quick questioning.  My psychologist helped me break it down, and I can see now that I feel compelled to answer questions, no matter how off track they get, which can quickly make me look wishy-washy and like I'm trying to fish something out of the doctor.  I realized I have been misinterpreted like this many times by other doctors, bosses, teachers, friends, and just about anybody I have to fill a form out for.  I am unable to keep my focus on what I need because the other person interrupts me with a question, and next thing you know, we are meandering around a little forest of misunderstanding because I don't understand the dynamics of social interaction and why they are doing this.

    I would never have been able to see this if it had not been laid out for me by my psychologist.  After that visit with him, I was able to go back to my referring doctor and explain what happened and what my psychologist said, and asked my doctor if she would mind just handling my stuff herself.  She was also disappointed in the neurologist for not spending more time with me getting pertinent information.

    As aspies, it is important to learn things like this so that we can bring up our quality of interaction with everyone around us, especially professionals who are supposed to be helping us.  I'm learning to tell people I have Asperger's.  I noticed my dentist responded immediately by switching to blue gloves and lowering the light, which actually helped a great deal.  I never would have thought that would have made a difference if I hadn't been made aware that I go into sensory overload from smells and light and noise.

    The bitterness I went through last year is nearly over.  I'm much more comfortable now with people.  I am able to handle interaction without becoming defensive, and if someone misunderstands me I am able to laugh about it and quickly correct it before it becomes a problem.  That's a tall order for someone who is supposed to be having the 'defect', but I'm in a position to intellectually understand that I have that defect, self assess, run diagnostics, and find solutions to the problem.  My psychologist seems amazed that it's possible to be on both sides of the fence like this at one time.

    I'm working really hard on learning how to be more social.  No offense to anyone, but I really don't like it.  I like people fine as long as I have a remote control in my hand, but I can't turn people down or switch channels in Walmart.  I can't mute that annoying beep beep at the registers or stop people from asking how I am.  I really don't want to kill anyone, but screaming children and ring tones push a big red hate button in me, and I have nothing to stop that sensory overload unless I'm wasted on a load of vicodin and muscle relaxers.  I'm afraid anti-depressants are counter-intuitive with me, doctors pull me off those real quick.

    I think it's great that kids can get help like this much earlier in their lives nowadays.  I wonder sometimes how different my life might be right now if I'd gotten the help I needed when I was young.  Some people are more kind and patient when they understand I'm challenged with too much going on in my head all at once and having to navigate through it just to interact with them.  I would have appreciated having more kindness and patience in my life as a child.

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