A Delightful Puzzle...
Imagine being dropped in the woods without a map or a compass...dumped off in a foreign country where you didn't speak the language and everything smelled funny...or finding yourself in the cockpit of an airplane with no idea how to fly!! Welcome to my world! This is what everyday is like for me. What seems like an ordinary, everyday situation for you might be totally frightening to me.
I've kind of known all my life that I was different than most of the other people around me, but I was always made to think/feel that it was something unique and special, something to be proud of. Never in a million years would I have guess it was because there's technically something "wrong" with my brain and the way it processes information! At the age of 34, after long years of questions and not a lot of answers, I got my answer...I am an Aspie!! I have Asperger's syndrome, a high-functioning form of Autism. Most people who meet me would never know....now the AD/HD that I also have, yeah they'd guess that one...but not the rest. So how does a kid get so far in life and never know?
I was born in 1979, an only child, and even though my mother is a nurse and my father was a neonatal respiratory therapist...no one had a clue. It's not their fault though. At the time if you weren't the stereotypical Rain Man type character, well you weren't autistic and the idea of a spectrum hadn't even occurred to doctors yet. I read early, picked up a newspaper between the ages of 2-3 and read the headline to my astonished grandfather. I read everything in sight and I did it quickly, I was never taught to speed read, I just do it. I now know I am hyperlexic.
Hyperlexia was defined
by Silberberg and Silberberg (1967), as" the precocious ability to read words without prior training in learning to read typically before the age of 5." I went to a very tiny Lutheran school from Pre-K to 5th grade. When I say very tiny, I mean in 5th grade it was me and another boy! While it was nice in the idea that they could pull me out and let me do 7th and 8th grade language work in 4th grade, it also had it's downsides. I now know that not only do I really suck at math, I actually have a learning disability in math. Explains my all A's through school...except math. School was generally a safe place for me. I was happy there, most of the time. I loved my teachers and they loved me. I worked hard and always wanted more work to do. I was the kid that would show up sick because I was afraid I'd miss something. Socially, I struggled a bit. I preferred the company of adults and had a hard time playing with and relating to my peers. In elementary school I had two best friends and that was it. In middle/high school I still had one best friend and then a few close friends. That trend is a tad different today, but not a lot. I have two best friends, and about 4 other very close friends, and then a circle of good friends whom I adore and a host of others I've met either in school or during my teaching career. I'm great on Facebook or text, but if I don't know you very well, I'm not so good in person. I have to warm up to people and situations. Very rarely do I meet someone and feel an instant comfort or click...I think that's only happened three times in 34 years!
My Daddy was my best friend, probably since the moment I arrived. It was reported to me that when he and my mother called my grandparents to tell them that I was here (they were slightly mad for not getting a call to let them know my Mom was on the way to the hospital) and i was a girl...my Daddy told my Grandpa..."Do you think we can teach a girl to fish?" (They did, however I did and still do refuse to bait my own hook or touch a fish! I sat with my Daddy and watched baseball (Braves ~ in the basement years!) and football (Auburn and Miami Dolphins) and my penchant for words ended up with me collecting quite a colorful vocabulary that I could use correctly at a very young age! We spent lots of weekends together while my Mom was working. Daddy taught me to bowl and at 6 plopped me into our local youth bowling league and was both a parent and a coach. That youth league turned into the best thing for me outside of school and it was how I made friends and even eventually met my ex-husband! Daddy would take me where I wanted to go usually Burger King, the local Mexican restaurant (El Zapata in those days), and the library. As I got a little older he even braved the mall with me because I loved the dollar store (still do!). My Daddy went into the hospital for an angioplasty when I was 15. I think he might have known what was coming because before he went in, he sat with me on the living room couch watching TV and told me that if something should happen, to know that he was always proud of me and always loved me. Being 15, I told him to not be silly of course he'd be fine and could he pass the chips. I remember the night before his surgery I begged and begged my Mom to take me up to the hospital to see him. I remember getting quite angry and mean to her about the whole thing and even though she was tired from working and had already been up to see him, she put me in the car and drove me over because she knew there'd be no shutting me up if she didn't. Daddy's surgery went well. In fact, they were getting ready to move him to a private room the next day. We visited him in ICU the last night...he was sitting up in the hospital recliner in his favorite Simpson's boxers (Who doesn't love Bart?) watching TV. I told him I'd be back the next day since we were on Spring Break from school and I figured my boyfriend (my later ex-husband) would drive me. Last thing we said to each other...I'll see you tomorrow Daddy, I love you....I'll see you later, I love you too. They called my mother later that night/morning to tell her he was having chest pains. She dropped me off up the street with my grandparents and went to the hospital. I waited and waited and waited and heard nothing and no one would tell me anything. I think they knew better than to tell me what was going on because I would have freaked out. Finally I roped my ex into driving me to the hospital. By the time I got there...it was too late. When I got to the waiting room and told the ladies at the desk who I was looking for, they looked at each other and back behind them at the "Quiet Room" and I knew my Daddy was gone. Inside I found my Mother, my aunt & uncle, and I honestly can't tell you who all else and everyone was crying and I knew he was gone. My therapist refers to this as a trigger event in my life, much like PTSD. I don't think it's all that as much as know that I know the truth about myself...I just lost the person who had the road map to my brain. My Daddy knew how to fix the world for me and how to make everything ok again. Suddenly I was in that forest and lost and I'm only now finding my way out.
I went on to finish high school, National Honor Society and all that jazz. Even did a semester of college before my senior year of high school. I got married on my 20th birthday to the only boyfriend I'd ever had...did I mention autistic people hate change?? I had my son Stevie when I was 21. I graduated college, after changing majors at least twice, did I mention autistic people who hate change often have a hard time finding where they fit in the world, and became an elementary school teacher. I had my daughter Madison at 23 and got my Master's degree in Education. By then, my marriage wasn't doing so great. Autistic people aren't great with communication or relationships...we remain friends and we're ok as friends but that's really all we can handle.
About the time we got divorced, I began looking for answers because not only was I having more issues than I was used to, my son was showing odd behaviors. I'd been diagnosed as AD/HD for quite some time so I guessed that would be his problem too. His Pre-K year...we weren't sure Kindergarten was going to survive him! He was tested for the gifted program and tested borderline genius, but his behavior really kept him out of the gifted program and out of the private school I had thought about putting him in. God works in mysterious ways because he couldn't have delivered Stevie to a better set of teachers if I'd handpicked them myself. His K-1 teacher was amazing with him and he made such progress that we began to think well, he's just a boy, he'll grow out of it. Second and third grade were rocky in terms of academics but his behavior continued to improved. Finally at the end of third he was diagnosed AD/HD, but his father was totally against medicine so we ran with it. Stevie continued to make progress behaviorally and socially, but academically it was much slower especially writing and math. To circumvent the school district which can take foreverrrrrrrr to test a child, I paid out of pocket to have him tested. He was diagnosed as PDD-NOS (Pervasive Developmental Disorder - Not Otherwise Specified) basically the old diagnosis of high-functioning Autism. As I was filling out all these papers for him and my students (I was teaching inclusion Kindergarten at that time), I started to stop and say wait...I do that...and I did that as a kid. That's when I started to think...maybe it's something he inherited, maybe that's my problem. So again, out of pocket (my insurance doesn't cover testing), I got tested for a full range of psych issues. They made me do all the tests off of my Adderall, we'd like to retest one day on it because my IQ was 120 and they estimate it's actually 10-20 points higher if I'm on my meds and can focus on the tests. I have a wicked (99th percentile) processing speed so my brain is basically on full speed 24/7 with all my senses wired up and I have a very low perception speed. Basically...I'm taking in info/stimuli 24/7 but my brain has no clue what to do with it and forget trying to retrieve anything. My working memory is horrible even to the point that I can't remember entire seasons of a TV I watched, the good news is, there's always something new on TV for me! I was also diagnosed with anxiety disorder and put on Xanax, but we all knew there was something else driving this train. They kept testing and testing and finally last month I got my official papers in hand. I have Asperger's Syndrome!
Basically I too am up at the high end of the Autism spectrum meaning I am functioning quite well, but I still have quite a bit of difficulty.
Most of my friends/family are just used to me. They know I'm quirky and a little different, but they love me for it. I've been really surprised by all the reactions to my diagnosis. Ranging from...well that makes sense to wow, that's kind of cool...but not a single negative response! (Did I mention I have the greatest family/friends?) The reason I've named this blog A Delightful Puzzle is that what my current therapist has dubbed me. He says I am the most interesting case he's seen yet. He's never seen someone with Autism, AD/HD & Anxiety too function as highly as I do and yet be able to freak out and break down with the best of them. He told me in our third or fourth meeting that I was "a delightful puzzle" that just seemed to get more intricate and interesting just when you thought you'd figured it out. I intend to use this blog to help everyone understand what it's like to be me and through that what it's like to be Autistic. Hopefully that can help to raise awareness and promote acceptance for all of us ASD (Autism Spectrum Disorder...the new label given to all of us on the spectrum in the DSM-V that came out this year) people out there, my son and I included (Madison, by the way, was debated about being put on as an Aspie, but she's functioning so well at the moment she only retains the AD/HD and Anxiety labels, but if it worsens like it did for me, they will change her diagnosis too.).
Don't be shy either!! If there's something you'd like to know/ask about Autism or what it's like to be me...feel free. The teacher in me will tell you that the only stupid question is the one you don't ask! I'm not ashamed to be an Aspie, it's nice to finally know what I am so I can keep working on the who I am. Nice to have a "group" to belong to where everyone is more like me. And I don't let Autism stop me...my ex once told me I used it as an excuse...I promptly told him, no it's not an excuse...it's an explanation. It's why I am the way I am and why I do what I do. And it's not going to hold me back because I've never let it get in my way before I knew so why would I know? I'll be walking in Dec. 2014 with a Doctorate in Education in Curriculum, Assessment, and Instruction so don't ever think someone with Autism can't do something because we can and we will...and if you tell us not to or that we can't...we might even do it just to prove you wrong! :-)
