Wednesday, September 24, 2014

Entry 4: Under The Radar, A Little Girl With Autism Gets Missed


Disclaimer A

Dec. 21. 2011

A series of non-coincidentally coincidental events have bestowed self-awareness upon me. It has become both my best friend, and my worst nightmare. It’s like something out of the Twilight Zone, in a way. What happens when everything you thought you knew was tainted by something?
By a difference in perception you were never fully aware that you had? Through this overly intellectual naiveté. I'd come to think that was the way things were until I go back in time and really try to think about it.

I knew I was different on some deep inner level, always. However, like a truly logical person, I couldn't really grasp what wasn't being validated. Then again, in the name of logic, I simply could not accept the labels I was being given. They just did not feel right, or correct. They feel like judgments, and inaccurate ones at that. In fact, it all felt like a total injustice somehow, though I didn't know exactly how.

I may have known who I was when I was very small. I was quiet, careful, and cautious. Protective of my fragility. But as I grew older, I began to feel lonely. I watched the kids at school, in awe.
I watched them talk to each other, then I would carefully approach them, and join in at the right time, perfectly timed. If I wasn't sure of the right time, I would withdraw myself. I was timid in groups, but a bit of a little boss at home.

Controlling my play meant living in my own fantasy world where dolls were fairies, bears were care bears, and horses were unicorns. They were my playmates, mostly. Other than those I was willing to let in, once and awhile. The figurines did not demand to change the script, the plan. This was much more comforting.

The girls in my kindergarten and first grade classrooms mothered me. I was half-dependent on it, and half resentful of it, but I said nothing. I didn't know how or what to say, so I remained subservient and cooperatively dutiful.

After all, I did love my fair few little friends. They were like guiding lights. Still, I had to trust them first, and I preferred play dates be at my house. Unfamiliar environments frightened me. The one sleepover I had at another child’s house terrified me. I did not partake in any more of them, until I was a lot older.

I was always very appeasing and apologetic, if I said or did something I felt was silly. I self-deprecated as young as 7 years old, shyly telling a girl at her birthday party “don't bother with the card, the printing is terrible, and you won't be able to read it.”

For some reason, in second grade many of those kids began to turn on me. It both shocked me, and infected my heart. This was my first taste of true social rejection. As our ages increased, my social idiosyncrasies became more obvious. I couldn't hide them like I had been previously getting away with, and this brought rejection. I began to feel like a failure, a disappointment. At seven, I began to subtly hate myself. I now knew that I couldn't do certain things as well as my peers.

When we began to learn sports in second grade, it was like I'd arrived in Hell. I didn't understand what could be so fun about spontaneously bouncing a ball back and forth to each other! The first thing that came to my mind, when a ball would come at me, was move out of the way. This was to prevent myself from being hit by it. I couldn't stand being hit or bumped by an object, it was as bad to me as bumping into something.

I was pretty weak, I was clumsy, and so I had to be careful in order for this to not happen to me. Sometimes it did anyway. So why, for heaven’s sake would I seek this out? No way! 

I knew I could not catch it, and would end up having it hit me. Yet I was forced to partake in PE until age eleven, when I finally got a doctor’s note in the name of some other random excuse. I still get goose bumps remembering the sheer dread I would suffer before PE class. It was so deep and profound that I felt like throwing up. The teachers called that an attitude.

I dreaded discomfort. Raindrops on my head, wet feet, the cold, rocky beaches, sunlight in my eyes, but I never made much of a fuss as a tiny child. I didn't even know how to, I guess. I barely have any memories of being emotional before the age of 6 other than being physically injured, which was rare, as I was cautious.

In fairness, I do remember many things from being under 6, just not emotions, well… not as much anyway. Later on though, when I was discomforted, I would get behavioral manifestations. I would tantrum or ‘melt down’ after school, when I couldn't take any more of a long, sensory offensive, overloading day.

As I got older, things definitely changed. I felt more restless. I had extremely intense interests, and because I could not understand much of who I was or what the hell I was wanting or feeling I needed them.

It felt weird and overwhelming for me to hug and kiss my family members all the time as they did, so I wanted to talk obsessively about my interests to them, instead. I still do this today with my husband.

If I became interested in something, I would need to know every aspect about this thing, this concept. How? When? What type/s?

I would get really into countries, cultures. When I did, say for example, get into Hungarian culture, I would need to search my family tree in order to analyze the possibility of having some Hungarian blood. I would want to find it, and relate. I would think back to historical times, and make a fantasy. 

I wanted to understand myself, nobody seemed to like me. I was lonely. Of course, this behavior only caused further bullying, and often words like dork geek and weird were used. Thus I had my escape.

Here's another culture, another world that I have made myself part of,and, I know everything about it.

Dolls--I loved dolls, but not playing with them like normal little girls. I loved collecting them. Examining them. In some of my toddler video footage, I appear to be repetitively examining dolls, opening and closing their eyes over and over. I guess that's the feminine version of lining up trucks? I always say, he loved the wheels on trains, I loved the dress on Alice in Wonderland

Back to dolls. I loved researching what materials they were made out of, and what type they would be, their value. Every month, I had to have a new issue of Doll Maker, and Doll Collector. I loved to look through the back sections of Doll Collector, to see which Antique dolls were being sold at good prices. I never got any of them, of course. But because I couldn't have them, I'd fantasize about the case if I did, and get high from the feeling.

As opposed to getting angry, upset, and hysterical, or ending up having an outburst, I would often resort to this. I'd escape into fantasy. I'd also do things like bite my nails, sometimes until they bled, and twist my hair.

I even occasionally got so frustrated I did have a fit, but I got in big trouble for it. So I'd try my hardest not to. I knew that logically, there was no way I could order a 700.00 antique doll as a child of 9 years old.

I had fancy, proper names for all my dolls, because I read baby name books. I invented personas for each of them, based on all the excessive and (maybe age-inappropriate) TV I was watching. They became my friends when no one else would be, but sadly they were all merely extensions of me and the things that I liked.

People, I picked out certain personalities and looked up to them, idealized them. I wrote and scripted fantasy letter to them, in my head, while pretending that they cared and were interested.

Shirley Temple, I knew everything there was to know about her life. I collected every movie, even the rarest ones. I called every single video store on the island, until I had the original Baby B tape. I finally found a copy, at a tiny little video store called Fireside Video.

I negotiated with the Fireside Guys to just buy it off of them for seven bucks, because it's not a popular tape, so nobody will rent it, right?, And because I had to have it. I remember telling them umm just a sec while I yelled to my mother, they have the tape! They’ll let me buy it! Can we go get it now?

I know it sounds like I was a brat, and that I was hopelessly selfish, but I was just a sad and lonely little girl. In a way, I may have turned out to be a different person, had I not been through what was to lie ahead,

I had odd fixations on many things, and people. One was on the Gabor Sisters, Zsa Zsa and Eva Gabor. They were eccentric, Hungarian celebrity personas that had their day in the 50's and 60's. To this day I do not understand why these ladies fascinated me so much. Maybe it was their contrasted eccentricities. I think maybe it was the fact that Eva Gabor played the voice of my favorite character from The Rescuers, Miss Bianca, and also, I was studying about Hungary. I loved to compare and contrast them.

When Eva Gabor died in 1994, I went on a truly obsessive bender where everything related to Eva Gabor in some way, for months. Considering all this, it does amaze me, that nobody identified me as an autistic child. I realize my precocious way with words, and my little-adult-like brightness, masked it. However, it should have identified it, had anyone actually known what autism is.

I remember reading Zsa Zsa's biography, which was taken away from me because of inappropriate sexual content. However, because she never said I had sex with so and so and rather I made love to I literally thought that's just what she was doing, kissy-kissing her man-at-the-time. I even had a naive little mental picture.

I began to want to act ladylike and imitate Zsa Zsa and glamorous Madonna. I was 9, but I guess it was more of a 5-year-old thing to do. Well, both a five year old, and a grown up thing to go. Goes to show how different autistic development patterns are. I tried to do make up but I looked like a clown. The kids heckled at me, just as they had when I glued pennies to the bottom of my shoes in order to tap like Shirley Temple.

The whole time I was trying to be all these other people, and indulge in all these things, I was just deeply unsatisfied with myself. I was socially isolated. I actually hated myself entirely.

I hated how clumsy I was, how much my teeth stuck out, how messy I was, how incapable I was of doing anything precisely, nicely and right. The way that, ironically, I needed it to be.

I was constantly preventing emotional meltdowns by disassociating with how frustrated I really was, much of the time. Or, I would go to my room, to cry and rock, by myself. Or I would bounce on my bed, and then trampoline, sometimes throwing myself backwards. I nearly gave myself whiplash, a couple of times. Today, I have an apparent full loss of curve in my neck. It might have been my body safeguarding me from injury.

However, nobody knew of my secrets, and even if they did know some, they didn't know what to make of it. I would let nobody in. Nobody but my current Hamster. I would listen to my music tapes, Charlotte Diamond, Raffi, cultural and rhythmic music 50 times over. This is the way I needed it to be.

Everybody at school treated me like a freak. The teachers didn't understand how I could be so bright, yet having all these problems with neatness, clumsiness and even hygiene.

My peers were usually just disgusted in me, for the most part. They spoke to me in a tone of voice fit for a dog, it seemed. Whenever I would try to say anything to them, the response was usually ‘Oooooookay’’, and this terrible look that signified a desire to stay away from it.

I did eventually acquire a few fellow-outcast school friends, more boys, but a couple girls too. Some of them had diagnosed disabilities, others struggled but had no label. I know they were on the spectrum. I remember becoming a huge bully target after spending quite a bit of time with the two girls in the school who had Down’s syndrome. But for some reason, I seemed to be the biggest target of them all.

Those other geeky/different kids were not as heavily bullied as I was, they were treated more as if they were just not there. Sometimes I felt as though I was not there too. Maybe that’s why I tried to make social moves in order to be noticed. This backfired badly.

So here I was at the end of my elementary school years with this quiescent whammy. My own idealistic, obsessive need for precision, combined with a feeling of pessimistic-doubt-bordering-on-failure that I could possibly meet that need for myself and Win the game.

I developed a self-loathing that made me desire to do everything in my power to stop acting like me, and act/talk like the cooler kids. I did so, somewhat successfully, despite the various prices I paid.

I was from a broken home environment, and I had rudimentary emotions. So I came across some dreadful things that changed me forever. I became introduced to maladaptive coping, eating disorder, substance misuse, and vanity as I prettied up from that androgynously awkward kid. After a while I became neurotic. Script after script, I got better at cute. Better at charming. Better at hiding, though I was festering inside. Eventually I couldn't hide. As I hit walls, I got further hurt, but this was all part of my story. I survived.

So, my adolescence was dark, painful and nasty, and it only secretly continued past adolescence. It was in lieu of my building exasperation as to why. I know that the way I was as a child holds the core answer. Everything else happened because I didn't get help, in my childhood, as I should have.





- Rose Whitson-Guedes

Diary of a Girl Outside The Box is also available as a fully edited/pro formatted PDF, for more info see http://www.girloutside.org/booksall 









2 comments:

  1. can relate to some of this. The bullying part to some extent. After a while my problem wasn't so much the bullying itself but the subsequent social phobia that developed in response. I blew events out of proportion, saw people's reactions with a warped perception, mind-read negative reactions, personalized people's reactions when they were nothing to do with me, and otherwise imagined people didn't like me and reacted negatively. Whereever I went - there I was. Thought I'd mention this in case you may find it relevant. Regardless, whether the negative reactions of others.. and our perceptions thereof... are accurate or imagined, the impact on our self image can be devastating. Unfortunately I don't have any "it gets better" story this time, as have been struggling with a lot of these feelings lately. A recent situation where I met an old acquaintance I had not seen for many years, who later rejected my friend request on FB was triggering more recently, although these things can and often do happen to everybody and I can say honestly is not important enough to lose sleep over. Still , when we are already feeling down, these small setbacks can hurt more than they should. I do think whatever we imagine can become a self-fulfilling prophecy so it's definitely worth trying to keep on top of and seek out or continue to seek help if we don't feel we are coping.

    ReplyDelete
    Replies
    1. I relate with you on the above, Neil, and have been afflicted with similar. There's all kinds of "labels" for it but really, it's simply social-emotional-interpersonal "PTSD". Yes, it is so easy to be re-triggered. It happened to me with some of the trolling and some personal traumas in the past year an a bit, and it affected me a lot. Took a while to "get back up." I get it. Also, I have the same self-regulatory insights. It's good we have this, not all do. It helps to overcome, eventually.

      Delete