Wednesday, June 22, 2011

What Is It Like To Have Asperger's? The Tween andTeen Years >:p

This is Part II of my series on life as an Aspie.

Part 1: What Is It Like To Have Asperger's? My perspective.
Part 2: What Is It Like To Have Asperger's? The Tween and Teen Years. 
Part 3: What Is It Like To Have Asperger's? Adulthood  

You know? It's not the easiest thing for me to remember and write about my "tween" and teen years. It's not that I have Alzheimer's or anything, but so many of the memories are unpleasant... like getting-bitten-by-a-shark unpleasant.

If I hadn't had access to horses, I can't even imagine how life might have been. Let me start with puberty. Personally, I welcomed puberty like I would have welcomed the plague. I had known the "facts of life" for a few years by age 10, but rebelled by dressing and wearing my hair like a boy. I'm not sure if I believed that pretending to be a boy would somehow prevent my perceived downward spiral into full-fledged womanhood, but to my dismay  I was in 6th grade when I got "it." While I've heard stories about other girls celebrating the arrival of womanhood, I wanted to pretend it hadn't happened.

Because I tend to be very hypersensitive to physical stimulation, I was able to feel... "it." For me it was like wearing undergarments made of live, wiggling earthworms. I don't like the sensation of anything wet anywhere on my body, least of all...   I truly found the entire situation completely unbearable, but knew there was nothing I could do about it. It was hard to concentrate at school, to visit a museum with family, to walk, to ride horses, to live when "it" was present. When I had "it," I constantly thought about it. I didn't adjust to it over the next years, either. In my 40's, I have finally come to terms with it... and the laughable irony that I am currently going through peri-menopause has not escaped me in the least.

Socially the other girls were progressing as girls through the 6th, 7th and 8th grade are supposed to, yet I seemed trapped in a fantasy world of childhood somehow. Tweenage girls are not nice creatures, and just when I thought I was getting the hang of social structures, my understanding of other humans seemed to be pile-driven into the dirt as my peers went through the catty rituals of puberty. I had a few close friends who stuck by me. They told me I was "weird... but in a good way." I was just happy they would still talk to me!

Other girls... I just didn't "get" them. I couldn't pick out the hidden meanings of tone or voice inflection. I knew that in tweenage terms, "Nice sweater!" could mean either "I like your sweater," or "OMG - did you find that in some nerd's time capsule from the '60's?" As a result of my confusion, my responses to people's comments were often very inappropriate. I tried to copy the tones and inflections of other people's speech only to find further confusion when adults were offended in being addressed too informally or without respect, or when peers took offense to my intended compliments.

To this day I find I still sometimes inadvertently offend others. I generally think out everything I am going to say prior to saying it - including the volume, tone, inflection and word-choices... every time. Do you have any idea how tiring that gets in a fast-paced social situation? Is it any wonder I don't belong to the PTA? I still sometimes misjudge how others will perceive my statements... and then I have to go through the acrobatics of trying to smooth ruffled feathers.

Anywhoo - back to junior high school.

As a result of my lack of social skills and understanding, I was often taken advantage of. I was teased and I was bullied. I had my few friends, but I was fearful of making new friends because I knew I wasn't very good at it. I was horribly anxious and also very depressed.

Like many Aspies I was gifted - my strengths are writing and art. Writing... probably because I spent every free moment analyzing language and trying to figure out the magical equation for fitting in with my 7th grade peers, and art because when every word has a concrete picture associated with it, one finds they have a lot of excess and random pictures floating around in their heads that occasionally need to be taken out for a walk across a blank sheet of paper.

One of my favorite poems from that year of hell is:

Little horse of the golden glade,
All except my life is paid,
And now because that is done,
Across the fields of green we'll run.

We will run forever more,
Until we reach the golden door,
And when we reach that door - and through,
Only then life starts anew.

What? Doesn't every 13-year-old write death poetry? Unfortunately, death just seemed easier than dealing with my quickly-wilting social life.

It didn't get better when my family moved to a different state and I found myself in a new school with new kids... to my defense, I did make a friend. She rode horses too and apparently never bathed. Then I moved to a smaller school in hopes that fewer kids would mean that there were fewer kids to shun me. I did have a few friends through high school, but my social issues persisted. Since I lived my teenage life trying to be someone else, I'm sure other girls found it more than a little creepy when I was trying to be them. It wasn't that I wanted to be them per say, but from my analytical point of view I could see who the popular girls were. I figured that if I could act how they acted and say the kinds of things they said in the way they said it, that I would seem less socially undesirable. It didn't work, and I became even more depressed, unable to figure out what was wrong with me and why I was so different.

I involved myself with an area college theater group (who embraced me and my eccentricities completely) and with horses. While other teens tested their boundaries with alcohol or what-not, I hung out with a 60-something theater director with the energy of a 12-year-old and the attention span of a goldfish. One of my fellow-actors was a wonderful bisexual black man and the others were just wonderfully accepting of other people's differences. Acting came second-nature to me as I had been pretending to be other people for at least 15 years by that time.

I also developed a deep love for stories of the middle-ages or of fantasy worlds. I devoured the Narnia series, the Lord of the Rings and anything written in Olde English with a mad passion, and would receive some very unusual looks when I would speak or write fluently in Olde English. Apparently that talent won't win you acceptance and respect in the high school lunch room. Who knew? Looking back, I know now why other girls rolled their eyes... but it seemed like such a good idea at the time!

I hate to say I was a show-off, but I was. I was grasping at straws - trying to find something that the other girls would admire in me. I admired them for just being able to socialize and I wanted very much to be seen as talented and therefore (in my mind) as acceptable. I was memorialized in the yearbook my senior year as being "Most likely to write a screenplay called 'My Life At The Barn'."  Mission accomplished, no?

So, while I rode out the storm of depression, anxiety, social ineptitude and a stoically analytical view of the world around me, I did survive. If I had known then what I know now? Who knows? Perhaps I would have had 2 friends through those years! At any rate, college was much better for me both educationally and socially - but that is for a different post.


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Thursday, June 16, 2011

What Is It Like To Have Asperger's? My perspective.

What is it like to have Asperger's? What is it like to be human? Don't you hate it when people answer a question with a question? Oops - did I just do it again?

Well - being in the autism spectrum is a different experience for everyone.

One might think that as a mom with Asperger's I would better relate to my child with Asperger's. Unfortunately that is not necessarily the case. I have a hard enough time trying to understand "neuro-typical" people, let alone someone whose neuro-pathways are just a little misaligned, but in a slightly different way than my own. Iraq is very much an individual, and very different from her mom. Then again, there are Aspie traits we both possess, making it easier for me to relate on some levels.

Let me just start with "Me" and my view of the world, since that is what I understand best. Now, I'm not saying I fully understand myself, but who does? As a kid I had almost NO understanding of myself.



Like most kids, I tried to understand myself in relation to the world around me. The solid world - the objects that I could see, smell, hear, and touch - made sense. Other people were a different matter. My mother would tell you that I had "lots" of friends as a young child. That is true to some degree. Our neighborhood was filled with kids, and we all played together.

It was easy for me when we played games with rules, like kickball or kick the can. It was a little harder when it was time to pretend. My interests were different from those of the other girls. I didn't like dolls. I didn't like playing "house." I felt no enjoyment in the fantasy world of developing emotional bonds and mimicking the social interactions of older girls or adults. A tea party? Really? I didn't like the taste of tea, and some sink water in an old toy teacup that only minutes before rested at the bottom of a dust-filled toy chest... gross! And then to be told by my peers that the point of the game was not the drinking of the tea, but of interacting like a bunch of stuffy "grown-ups..." And WHY are we acting like boring adults?

I didn't see a purpose in pretending to be married, in pretending to have a baby, in pretending to clean a house. In the group of peers on my street, I truly wanted to fit in. I would do and say what I saw the other girls do and say, or I would pretend to be the family cat. That was easier. Cats meow. They rub up against people and they don't have to deal with the intricate social structures of "grown-ups" who talk about going to the ball, shopping, or tea parties. I think I spent most of my make-believe-with-peers time as a cat. It was better than being lonely, though I didn't hate playing by myself.

By the time I was about 7, my peers started to notice the differences in me. This added to my challenges. I had a very hard time reading facial expressions or the tones of a voice (I still do today, but not to the extent I did as a child). Interestingly I saw that other people seemed to have this magical understanding of other people's feelings, so I mistakenly assumed (for much of my life) that people would understand how I felt and what I was thinking. I was baffled when others didn't act toward me the way I thought they should behave or treat me the way I thought they should treat me - after all, I always tried to act toward other people the way I thought they wanted me to.

It wasn't uncommon for a peer to ask me, "wouldn't you rather go play somewhere else?" I guess most neuro-typical kids would understand this statement as a blow-off. (duh) Not me. I didn't really understand why someone would be concerned over my desire to play somewhere else. The way I figured it, if I wanted to play elsewhere, I would go elsewhere and they wouldn't need to ask (and I didn't understand why they felt the need to ask me - it was so weird to me). I would answer dubiously with "No. I want to play here with you." I can still feel in the pit of my stomach the uncertainty and anxiety that I would feel when I saw the other children's eyes roll, and hear the barely-masked whispers. If older girls were involved (say ages 10-13) they would often just tell me, point-blank, to leave.

"Why?" I'd ask. You can imagine the annoyance they felt with me then... and I had no idea. I just wanted to know why they didn't want to play with me. A lot of kids would get downright nasty at this point, and I would leave - still wondering what I did that the other kids didn't like.

At age 40-something, I now understand that typically-developing kids know "different" when they see it, and it apparently makes them uncomfortable. I made other kids uncomfortable but I had no idea why or what to do about it. I craved to be around other kids and wanted desperately to fit in, but was clueless as to how to achieve these things.

What did I like? Well, like many individuals with Asperger's, I had one BIG interest. Horses. Horses were on my mind 24/7/365. I wanted to know all there was to know about horses. I soaked up horse-related information like a sponge and would tell anyone who would listen (even if they didn't want to listen) all about horses, from conformation to dental issues as they related to a horse's bit.

Every now and then one of my peers would express an interest in a horse game. Things would turn a bit sour when the girl stated she wanted to play the role of a pink and purple pony with sparkly feet. I would play NO such game! Horse's can't be pink or purple and they're called HOOVES, not FEET! Once again I would unwittingly morph into Mr. Spock from Star Trek... and what "normal" little girl wants to try to play make-believe with a Vulcan?

At age 5 I met Mary M. - a little girl my age who was nearly as obsessed with horses as I was. Mary was my best friend for the next 4 years until her family moved to Connecticut. When we were together, we were horses. We made stalls to "live" in and would trot and canter about our yards, neighing. We would set up jumps and have horse shows. When I pretended to be a horse, I was a horse. I wanted to be a horse. I understood horses, and needless to say, often felt like a prey animal while with my human counterparts.


As with most people with Asperger's, I have sensory issues. My senses act and react differently than those of neuro-typical people. For the most part I am hyper-sensitive. Clothes itched and irritated my skin. Tights were the worst, especially when the crotch would ride down between my thighs, and then the seam would rub me to tears. Avoiding negative sensory stimulation became more important than fitting in or behaving in a socially acceptable manner. While other little girls knew better than to fuss with undergarments in public, I had to. Yup - I was that kid, over in a corner doing the butt-wiggle-dance, oblivious to the looks I was getting from everyone around me.

That statement may sound weird to you if you don't have sensory issues. The best way I can describe it is that it's like getting stung by a bee in a public place. You don't just stand there trying to hide your discomfort - you swat at it, cry out and ask around for ice. The only difference is that your bee-sting explanation will seem far more acceptable to your peers than my tights pain explanation.

Colors are more vivid - sometimes blinding. Light can be painful... and loud! (Yes - the buzz from fluorescent lights can be horribly distracting and annoying for me. Noises sometimes make me feel as if I have knives in my ears. (I have always loved fireworks, but I used to cry as I watched them as a child. The sight was beautiful to me, but it was accompanied by horrible pain. People would wonder at my tears, and I only felt more embarrassed and different knowing that somehow the dazzling spectacle wasn't hurting anyone but me.)  Crowds... crowds are positively dizzying to me to this day. My husband is pretty much the only reason I don't pass out or burst into tears at Disney World.

Any one of these overwhelming sensations can cause me to become overstimulated.  Here again, think of that bee-sting. Becoming overstimulated can be like getting stung by an entire nest of bees. Overstimulation can cause anxiety, meltdowns, frustration, anger, a complete shut-down... any number of reactions as the brain's way to try to block out some or all of the sensation. I would try so hard to hide it. I usually internalized the deep stress and anxiety I was feeling. Sometimes I would focus my eyes on something very small like a bug or a chip in the paint. By focusing deeply I learned to block out some of the craziness I felt so submerged in. The stress of turning my frustration and pain inward caused me to have regular stomach and intestinal issues.

Honestly, the best thing to do for an overstimulated child is to find a dim, quiet place. Once the pain of overstimulation starts to subside, I was better able to rejoin a situation for limited times. At Christmas parties at grown-up's houses, I remember taking breaks in the bathroom or even sitting in a coat closet for a few minutes.

Many children with Asperger's perform repetitive behaviors like spinning or hand-flapping. I sucked my thumb. While thumb-sucking is a fairly normal habit for small children, I sucked my thumb until I was 13 years old! Yes... really. Of course I never let anyone see me do it. I would also focus deeply on the sensation of rubbing the side of my forefinger across my top lip. This was subtle enough to make me look like I was thinking about something, yet provided enough of a stimulus to allow me to block out the rest of the world temporarily.

I also think in pictures. If you've ever seen the Temple Grandin movie or read her books - yes... that's how I think. You say "Do you have ants in your pants?," I see this:
You say "Hop on over here," and I see an image of a rabbit in my head. You say you have a "smashing headache," and I see a pretty gross image of a half-smashed head. Over the years I have learned what different expressions mean, but I still see those pictures. I think this is why I enjoy word-play and puns. I continuously think of each of the meanings of each word.

I'm going to leave off for now (I worry I may have overstimulated my poor readers), and in the next few days (or the next time I get a chance) I'll post about my experiences in the "tween" and teen years.

Part 1: What Is It Like To Have Asperger's? My perspective.
Part 2: What Is It Like To Have Asperger's? The Tween and Teen Years.
Part 3: What Is It Like To Have Asperger's? Adulthood 

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Tuesday, June 14, 2011

Momentum - Asperger's and Learning to Ride a Bicycle

Learning to ride a bike can be a daunting goal for any kid, let alone a kid with Asperger's. Issues with coordination and balance can get in the way of each little success, and for those who tend to be anxious, the fear of falling, not succeeding, being teased by peers, doing a face-plant off the front of the bike, getting one's shoelaces tangled in the pedals, having a blowout doing 70, forgetting how to use the handlebars, snakes suddenly popping up from holes in the pavement, tipping over and unexpected elephants attacks can add to the worry of clearing such a momentous hurdle.

It's easy when you're a little kid. The chance of wiping out on a 3-wheeler on a flat black top are like, WAY less than for a stylish young lady learning to balance and control a 2-wheeler.

Bike riding can be as much of a right of passage for parents as it is for kids! It's another one of those things... when all the moms are talking about their kids and it comes up that your kid doesn't know how to ride a bike yet at age 8. Do you launch into a lengthy explanation about the psychological and physiological differences in children in the autism spectrum, or do you do what I do and just say, "Eh... the fact that she can't ride a bike yet is a simple reflection of the poor parenting skills we possess. We're cool with it." ??   (You should see the looks I get with that one... )
*insert maniacal giggle-fit here*

The first attempts, while exciting, also proved frustrating...

So Daddy stepped in for a short pep-talk.

And though no snakes popped up unexpectedly from the warm pavement, the task at hand seemed very upsetting for poor Iraq. Her own inability to instantly be able to ride a bike like Lance Armstrong resulted in a fair amount of frustration.

But after a short break to soothe her overstimulated senses... (and after mom hopped on the small "Barbie" bike for a very short, circus-esque trip across the blacktop to the sound of giggles and applause from her admiring audience) Iraq was ready to give it one more try.

The sweet taste of success propelled her around and around the blacktop, and when she was ready to stop, the bike was all but forgotten as she ran to her daddy for a huge victory hug!

And The Skink thought it was pretty cool, too!

May you make lofty goals and far surpass your greatest expectations without becoming too overstimulated along the way!

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