What does it really mean? Part 1

In order to educate others about Asperger's and other Autism Spectrum Disorders I've decided to take the old DSM-IV definitions (DSM-5 ones are online yet) and tell you what it's like from my end. As a reminder, each person with an ASD is different. We all have different levels of abilities and different strengths and weaknesses. Some people have many difficulties in lots of areas of their life and others have just a few...people like me who may surprise you when you find out we have been diagnosed. Just because you've met one Autistic person doesn't mean you've met us all!! So please keep that in mind...what I write here is just from my experiences personally with myself and my son.

Diagnostic Criteria for 299.80 Asperger's Disorder

1. Qualitative impairment in social interaction, as manifested by at least two of the following:

1. 1. marked impairment in the use of multiple nonverbal behaviors such as eye-to eye gaze, facial expression, body postures, and gestures to regulate social interaction

1. 2. failure to develop peer relationships appropriate to developmental level

1. 3. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)

4. lack of social or emotional reciprocity

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Many of you who know me probably think I'm pretty outgoing, sociable, and that this really isn't an issue for me. Surprise!! It is a huge issue! My biggest triggers are new/unfamiliar situations, changes, and large crowds. When I first meet you, I might not talk a whole lot, or look at you when you talk to me much. I was taught to be polite always so I generally will smile, return a greeting, return a handshake, and I can even make small talk. However, when you get to know me and I"m comfortable with you...then you get to see the fun...the outgoing, "driven by a motor" me that comes up with the most random stuff at probably the most inappropriate times. In social situations, I always feel like everyone (even strangers) are either looking at me or talking about me. I try very hard in crowded places to not make eye contact with people and aside from the occasional mosh pit, I really don't like being mushed up to people I don't know. I've found that social situations really do leave me with a great deal of anxiety and I've just learned that if I know one's coming, I take a Xanax and keep on moving. I do have some impairments in using body-language, telling when someone's joking with me, and not interrupting others who are already talking. My biggest issue is tone of voice. I guess I'm like a dog, or so my therapist says. You can say whatever you want to me and I'm probably ok with it, as long as it's said in a calm and gentle manner. If you raise your voice, or it gets an edge of anger to it, I will shut down and general either meltdown crying or have a huge outburst of anger back. I also take everything personally. So if someone (ex: a boss or teacher) tells me I'm not doing something right or I need to change something, I feel like a total failure and that they just hate me as a person. It can be the farthest thing from the truth, but once my brain believes it, then it takes a long time to get rid of it if I ever can. I have over 300 friends on FB and if I look through I can tell you where I know each one from. However, when the crap hits the fan, there's only about 5 or 6 that I would call close friends. I've always been that way...I knew everyone, but only had one or two really good or best friends.  Now I just call them my Partners in Crime! I had a hard time socially in middle/high school. I just didn't fit in. I was different, odd and I knew it. I endured teasing just like many other kids, but a lot of what was said back then still sticks with me and colors my self-esteem to this day. As far as the DSM definition goes, I don't have as much of a problem with the lack of spontaneous seeking to share enjoyment. If it's something I'm interested in then you better believe I'm going to talk about it and go on and on and my Partners in Crime will attest to that. I also don't have much issues with social/emotional reciprocity. I will return a smile, handshake, or respond to a comment made to me or a greeting. I can feel empathy for anyone and I can respond generally appropriately to emotions as long as I'm not in the middle of meltdown. Now this doesn't mean I'm throwing a huge party or going to call and ask you to lunch. I don't do stuff like that. I will generally ask my Partners in Crime first if I'm doing something and I want someone to go...and if they can't I may or may not ask someone else, but more than likely I'm either not going or I'll just go alone (which is an issue in and of itself). I think I've come a long way in this area since I was a child, content to play alone (or with my 2 cousins and 1 or 2 neighborhood kids), preferring the company of adults to other kids my age, and very rigid in the activities I did. I bowled, I played piano...that was it. I know I still have work in this area, but it is by far one of my stronger areas. 

Lessons Learned in Disney

Well...we survived our Disney trip this past week. I must say, even though I do feel bad for getting the Guest Assistance Card it sure does make for an easier time. Yes, we don't look like there's anything physically wrong with us and yes we can get on the ride like everyone else....but after a few lines with wait times over 30 minutes...you'll see that maybe we're not like you. And then the meltdowns start and the tantrums and maybe even a few tears. With the GAC we just avoid the issues that set all that stuff off and everyone has a more pleasant day. That includes all our neurotypical fellow guests who don't have to witness us having said meltdown/tantrum...it really is a win, win situation for everyone! It also makes life easier when eating at the amazing Disney restaurants. My son is almost 13, well in the land of Disney, you are put on an adult ticket at age 10!!! This also means that if you're using the dining plan, they must order off an adult menu!! Now, my daughter (so close to the spectrum if she sneezes wrong she'll be on it), will eat and experiment with food. She enjoyed a lovely salmon, several nice salads, and some awesome chicken dishes and great desserts while we were there. My son, (PDD-NOS), thinks that chicken nuggets, nachos (meat/cheese/chips only), pizza, and hot dogs/hamburgers are their own food groups and the only ones he will eat from. With the GAC, he was allowed to order off the children's menu and not have it affect the dining plan. Now, the places still didn't always have something on the children's menu either that he wanted but he could usually get something closer to what he wanted. I think the two best meals I saw him eat while we were there was a plate of spaghetti and meatballs (all made just the way he likes it) at Mama Melroses's in Hollywood Studios and a hot dog of all things at The Brown Derby in Hollywood Studios. Otherwise he always at his fries and would pick at whatever he'd ordered and the boy just doesn't do dessert even though it's part of the plan. And thankfully we finally found bottled sweet tea in the cafeteria of our resort and brewed sweet tea he could fill up his resort mug with...he's definitely a Georgia boy when it comes to his beverage of choice. We also don't stay for fireworks...I love fireworks very much. My son can take or leave them, but he enjoys watching them from a distance. My daughter thinks they're pretty but hates the noise. Me, I love them and the noise, but I can't stand the huge crowd to leave the park after the show which means waiting foreverrrrr on a Disney bus to take us back to the resort. So, we leave before the show and get on a bus with plenty of room and weather permitting hit the pool where we can sometimes hear/see one of the shows depending on which resort we are at (Art of Animation this trip). We actually braved Magic Kingdom and one day of Hollywood Studios in ponchos thanks to Tropical Storm Andrea...and as freaked out by weather as I get...when a tornado warning was issued for Orange County (I had no idea where in Orange County I was to know if it was headed our way), we calmly ducked into Hall of Presidents for the show until it passed, kids were never aware of the tornado warning so everyone was cool. All in all it was a good trip, but I'm still tired two days later not because of the 20 something miles we walked (thanks pedometer app!), but of having all those people all around me all day for 5 days! Sensory overload for sure! We might take a year or two off from Disney, but they've got some stuff being built that's ready to open in 2014....so thinking summer of 2015 (omg...I'll have a 9th grader then!) will be a good time to revisit. And eventually I'd like to do a solo trip or a trip with just me and a couple of close friends...because I can't always eat where I want to and go where I want...and they just won't stand in line because they think they're too old and thus Mom is too old to stand in line and have her picture taken with Woody and Buzz (::: sadness :::). We've found Disney is one of my focus areas and if that escape from reality via movies, shows, or the parks makes life better for me, then so be it. My wallet may not always agree, especially now I've found pin collecting!!

Book Report ~ Twirling Naked in the Streets and No One Noticed: Growing Up With Undiagnosed Autism

~ Book Report ~

If you are really interested in what it's like to be an Aspie, check out this book by Jeannie Davide-Rivera,
Twirling Naked in the Streets and No One Noticed: Growing Up With Undiagnosed Autism. Like me, Jeannie wasn't diagnosed as being on the spectrum until she was an adult. I read her story in one day!! I couldn't put it down because so many things were so similar. I kept laughing and crying as I read because she was living my life! It's so nice to know I'm not alone! And thanks to the wonders of technology I've even been able to talk with her via Facebook. So check out her page at Aspie Writer and give the book a read! 

Twirling Naked in the Streets and No One Noticed on Amazon

A Delightful Puzzle ~ Where the Name Comes From

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! :-)

Hello World...Here I am!