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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  1. Love this post times a million! We are so alike!

  2. Thanks for the insight. I need all of the understanding I can get. =)

  3. This is an amazing post! Thank you so much for sharing!

  4. Thank you for posting...I was in tears as I read because I see my 7 year old daughter...she has not been diagnosed yet but I think I have finally found the answer I have searching for. At least I now have a better understanding of what she is going through. Thank you so much.

  5. Fantastic write up. My husband is an aspie and related most the the things you mentioned. Very entertaining reading too, well written!

  6. I really appreciate your post! My son was recently diagnosed with Aspergers and this gives me so much more insight into his world. Kudos!

  7. I am so glad I found your site. The more I read the more I know I found my issue! To top that off, we are very much alike. I don't remember a lot of my childhood, I did have a few friends but as age advances ( from then to now) I have very few. I remember pretend play with barbies at my grandmas house till around age 7. I played with cars, I was a tomboy. From the time I do remember, as soon as I could read the books swept me away to my favorite places. I was raised as a country girl, we had horses-I've rode all my life till 5 or 6 years ago. Circumstances really suck! Anyhow, The Black Stallion series was my fave and at age 13 I had just been hired to exercise race horses and I couldn't wait!! My dream came true. Then we moved out of state. Yay. Not. My parents reunited ectect, then my mom died in 2000. By 2002/03 my horse riding days seemed done. In 02 I got into a head on car accident and almost lost my foot. Between that and my mom, dad and finances I'm practically horseless now and it pains me a lot. Do you have horses now?

    Its funny how you mention that actual pictures in your mind. I do the same thing. I mean, what doesn't enter my mind? Does it ever shut off? ha! I am lacking in social skills, which I've been noticing over the last couple years. It never dawned on me before. I've pushed everyone away some how or other. I guess that's easy to do with my personality. I even hate myself sometimes. The understanding of it all is what will help all of us in this battle. I wish I could write as well as you, I have a hard time keeping stuff together and getting everything out right! < sigh >

    1. I can't stand buzzing noises, I have to find the source until it's gone. The buzzing and flickering at a Walmart type place..makes my eyes hurt and I can't stand that either. Also, I would say I do not liked to be touched. I can love on my kids but don't sit next to me with your arm on mine, I'll put it back on you pretty quick, same with cuddling. I might, but not long. I do not like to be a passenger-way before my accident-intensified after. For awhile I would feel sick riding with someone else after the accident. I also feel like the way we do stuff is better or more correct that how someone else does it. Like it was common sense and they don't have any. :)

  8. Thanks for the insight! Very helpful when dealing with my 7 yr old Aspie.

  9. Does soft music like Gregorian chanting or instrumental music help you when you are overstimulated? They help me to relax and I sometimes feel as though I am floating in Heaven with a chorus of angels. On the flip-side, death/black metal make me feel as though I am an angelic knight surrounded by an army of demons.


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