Asperger's, PDD-NOS, SAD, or something else entirely?

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derbyrolla
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27 Feb 2015, 11:10 am

I'm 30, and here's my story.
I was in the last 8 months of my master's program in general psychology (a useless endeavor professionally speaking, I might add), and one of our assignments was to watch a movie with psychological aspects and write a paper analyzing it. I chose "Max and Mary." Halfway through, I thought it was about two people with social anxiety disorder (which I have), so I began writing bullet points for my paper while still watching it. When Max announced he had Asperger's, my jaw dropped. I identified with so much of him and just assumed he had what I had. I became obsessed.

I have a cousin with severe autism. From my experience with her, I ignorantly assumed that she was the face of the autism spectrum. After watching the movie, I read everything I could get my hands on about Asperger's, watched YouTube videos, visited forum after forum, read books by Temple Grandin and Tony Attwood, among others, and even decided to make the male:female gender discrepancy among those with higher intelligence the topic of my masters thesis. I also took every self-assessment I could possibly find on the internet and scored highly in the aspie range on every single one. I joined this forum because, whether I will be able to obtain formal diagnosis or not, I 99.9% consider myself one and "wrong planet" perfectly resonates with my lifelong inability to feel like I "fit in" with any group, clique, whatever. I am wondering now if I should bother seeking diagnosis, because I feel like if I do get a diagnosis, I will be able to do things like join groups where I might actually feel like I belong with others and won't be afraid to say things and have people look at me weird (or outright tell me that I am), and can maybe get some help professionally where I might be able to find a job where I don't feel like I am on the verge of a nervous breakdown the entire day. Here are many of the things I experience and have experienced throughout life that "fit the bill" of the Asperger's diagnosis.

As a child:
* I had long, stringy, never-brushed hair that always hung in my face, unless my grandma came to the rescue (often met with extreme resistance because pulling out all the knots was painful).
* Looking back at class group photos, I was the only girl with disheveled hair and a sideways smile, hands hanging limply at my side and legs spread apart, dressed in a sweatshirt and frumpy leggings and ballerina flats, among girls in frilly dresses with neat little french braids and fashionable headbands.
* I never understood the "point" of dolls, Barbie's, etc., because they don't do anything and you can only change their outfits so many times before becoming bored. I used to take them out and organize them and then put them away. I became very upset that my brother never trusted me to play with his Transformers (they actually DO things--cool things--like transform).
* I found spinning around in circles until I was dizzy fascinating and did it often. I also discovered at a young age that you could, once thoroughly dizzy, spin around in the opposite direction to become un-dizzy. This was a frequent fun experiment.
* I was reading by age 3 and was astounded my first week of kindergarten to discover that most of my classmates didn't even know the alphabet yet. My parents used to buy me learning activity workbooks--like, practice the alphabet, write the word, color by numbers, etc., way prior to kindergarten and I would go through them very quickly.
* I had to listen to the same educational sing-along tape every night as I went to bed or I couldn't sleep. One night, the tape player ate it and my parents showed no inclination of replacing it. I threw a fit and my dad finally went to the store to get me a new one so I could go to bed.
* I sucked my thumb until I was 9.
* When I was finally heavily pressured to quit sucking my thumb by my parents, dentist, and future orthodontist, I replaced that habit by rubbing my upper lip (which I still do today, at age 30), or twisting my fingers.
* I was always a tomboy who preferred to play outside, doing unorthodox things like catching frogs at the retention pond or wandering aimlessly through the woods behind my house in search of forts or anything else cool.
* Summer day camp at the YMCA when I was 7 & 8 was hell for me because I couldn't identify with the girls who liked to sit in circles, putting on Lip Smackers or making plastic bracelets and speaking in what sounded like pointless babble to me. I was more interested in picking out interesting pieces of grass or talking about My Little Pony, which I collected, with one or two people. When they were absent, I was miserable all day and wandered around by myself.
* My temper tantrums were frequent and often violent. I would go up in the air, stiffen out like a board, fall to the floor, and start banging my head, pulling at my hair and face, screaming, etc., and afterward, would go to my room for hours, often to just stare at the wall or something.
* I always hated crowds and attention. I was a "cute" toddler/little kid, so people looked at me with cocked smiles a lot, at which point I would get angry and ask if they had a staring problem.
* "Go to your room" was never a "punishment" for me, but I never let my parents know that.
* "You're grounded" also had no negative effect on me.
* I used to watch "The Wizard of Oz" and "Alice in Wonderland" over and over and over--sometimes several times per day. They still remain favorites, especially the new Tim Burton "Alice in Wonderland," which I often quote.
* I had a stutter. I still often do when nervous or caught off-guard.
* I often do something called "palilalia," which is repeating the tail-end of what I just said under my breath. This is less frequent now, in adulthood, but happened constantly in childhood.
* I once brought a dictionary to show-and-tell.
* "Look at me when I'm talking to you" sucked. I always found eye contact difficult. This could be sucked up to social anxiety, but really shouldn't apply when we're considering I have the same issue with people whom I know well and trust, such as my mom and trusted teachers. I have since learned that people like to be looked in the eye (never understood why), so I remind myself to do it, although sometimes feel like I'm over-doing it and coming across as more weird than attentive. I consciously remind myself things like, "3 seconds of eye contact followed by 3 seconds looking away. Repeat." I always stare at peoples' teeth when they talk.
In Adolescence
* I would find myself staring at people I admired, especially their hair or feet.
* Getting to school early was terrifying. If it happened, I would search for uninhabited places to hide or sit in a bathroom stall until the bell rang.
* I have no idea how to go up to someone and introduce myself. What do people talk about when they first meet? I have no clue what to say. I'll wait until someone talks to me first.
* This still applies today.
* When I decided I had a "crush" on a boy, I instantly became obsessed. I would talk about him constantly, try to learn his routine so I could "stalk" him from a distance, but would never, ever admit to him that I liked him.
* When I found a subject of interest to me, I would "collect information about categories of things." At one point, when I was 11, I became interested in Wicca. By the time I was 13, I had over 30+ books on the subject and could answer literally any question about it.
* In high school, my obsession switched to classic novels. I had a reading list. I hoard books. I currently have at least 6 80-gallon totes full of them that I have no place for yet cannot bring myself to get rid of them. Now, I have to watch the movie on all those books (Wuthering Heights, Anna Karenina, Great Expectations, Pride & Prejudice, Madame Bovary) and all the more "modern" renditions thereof.
* "Interview with the Vampire" was my favorite movie and I watched it, just like my childhood movies, over and over and over. Today, I can recite every line with stunning accuracy. I still love that movie.
* I quote things a lot, and correct people when they mis-quote anything.
* I used to hand my friends' between class notes back to them, riddled with red proofreading symbols.
* I also read the entire series of Vampire Chronicles in a couple years (had to wait for the later ones to be released). I also wrote fan fiction.
* I was told by a guy I was trying to date in high school that I obviously didn't care much about him because I never ask him questions about himself. That was not true; I was obsessed with him and tried to learn everything I could about him--although mostly from other people who knew him. So I started to ask him more questions, and he told me I was "asking the wrong questions." I was so confused.
* I used to (and still do) read textbooks for enjoyment.
* I did not like scribbles in my class notes. I would re-write the entire page to get rid of one scribble. They also had to be in order, with the same style of handwriting, and color-coded. This constant re-writing of notes, however, kept me from ever having to really "study" for anything. Also, I could see my notes in my head during tests and write the answers verbatim.
* I have always had grammar savant skills. In AP lit & comp in 11th grade, I raised my hand to correct the incorrect sentence everyday and always got it right. I think someone beat me to it 3x the entire semester, and once, I still got to correct the other student's error.
* Despite having the highest grade at the end of my AP lit & comp class, I failed the AP exam because I ran out of time on reading comprehension.
* We took a pre-test on the first day of that class and I failed it miserably because it was about naming the parts of speech. I didn't know what the parts of speech were called; I just intrinsically knew how a properly-written sentence is composed. I left class in tears.
Adulthood
* Dyscalculia: My first stats test in college, I memorized all of the formulas correctly, but almost all of my calculations came out wrong.
* It took me 4 years to complete an AA degree because I kept taking unrelated classes just because they looked "interesting." 80+ credits in, at 21 years old and still not fulfilling the gen ed requirement, I finally saw a degree audit counselor who set me on the right track.
* Continuing on for my BS took yet another 4 years because I changed my major 3x.
* Now I wish I'd majored in computer science, and am thus taking free courses on Coursea and am obsessed.
* I have no clue what to do with myself when I'm not learning. I literally pace around the house with no idea how to spend my time. That's when I discovered Coursera.
* My boyfriend often comments on my still monotone voice, gets mad at me when I don't act "surprised" or "enthusiastic" enough when he gives me gifts, and tells me I am inconsiderate often. He also frequently asks me "what's wrong?" when nothing is and refuses to take "nothing" for an answer. Something MUST be wrong; you're acting weird. I am ALWAYS acting weird, dude! Get used to it!
* I still throw things and pull at my hair when I am frustrated or overwhelmed.
* I have difficulty describing my emotions and absolutely hate being pressured to talk about them. It usually results in me getting frustrated and doing the above...
* I absolutely detest everyones' current taste in music. And seriously--America needs no more frickin' idols!
* I get distracted by a single thing on the tv screen and totally miss what else is going on. My bf will burst into laughter and ask me about something that just happened, and I'm like, "What? I didn't see anything."
* I cannot work or concentrate when people are standing near me.
* I become anxious and overwhelmed at work when there are more than one conversations going on around me, or someone is using the printer, shredding documents, vacuuming, etc. This is causing serious productivity problems. If someone comes in and stands behind me, I freeze.
* I am extremely conflict-averse, which makes working in customer service a continuous living hell.
* I stutter when faced when an un-scripted question and start to feel very anxious when a patient (I work front desk in a dental office) approaches me for "small talk" while waiting for their appointment. I probably come off as rude or unfriendly because I don't know what to say and usually just smile and laugh nervously, then make an excuse to go fill my water bottle.
* I can't dance. I have tried to learn, but couldn't make it past 4+ steps. I forget and feel totally embarrassed. I will not attend any event where I think I may be expected to dance.
* I am abysmal with directions. I get lost frequently (although thank the heavens for GPS on all smart phones). I had to GPS my bf's parents' house the first 15 times I drove there alone, and they live one neighborhood away. I get lost in buildings, and I got so lost my first day of college at UCF that I wandered around, sunburnt and very upset, for 45 minutes (found myself in the intramural field surrounded by people wearing scrubs; not my place to be since I was, at that time, an English major) until I found someone in a golf cart and begged him to drive me to wherever the hell parking garage G is located (about a 30-minute walk from your current location, he replied, laughing).
* I made not one single friend the whole time I was in college. I was once invited to a Halloween get-together, but I panicked and didn't show up because I was terrified I would say something weird.
* Frequently, when I say things, people look at each other and laugh.
* Frequently, I am ignored when I talk. I am unaware if this is because I am speaking so quietly that they can't hear me or if they consider the things I say unimportant.
* I have this lifelong tic where I laugh/giggle after nearly everything I say when nervous, or just in general conversation. It's embarrassing, but I can't control it.
* If someone is not smiling, I assume they are angry and start to feel nervous.
* If someone in the room is angry, I feel very nervous and my skin gets hot. It doesn't matter if I am not the reason for their anger. Sometimes my face even starts to shake.
* My facial expressions are often inappropriate for my current mood, such as smirking when I am angry or upset. I can feel while doing so that my muscles are doing the wrong thing, but I have no idea how to correct this. What makes it worse is that it is pointed out to me often. It has happened more than once while breaking up with someone, leading to being called "cold and callous" when I was in no way trying to come off as not caring about their hurt feelings.
* My bf and I went to the Pentagon Memorial while on vacation. I totally forgot that his grandfather had died in the plane that crashed there. He became very emotional at his memorial, and I no idea what to do. I started sweating profusely and darting my eyes around as if seeking escape. I was totally mute and felt awful because I had no idea what to say. I can't even describe how elated I was when we left and he started acting happy again, but I literally skipped a little while his head was turned, eliciting weird looks from the somber-looking visitors passing by.
* The 9-11 memorial was almost as excruciating. By the time we were done walking painfully slowly past the outrageously long wall of names, I was so mentally exhausted from trying to maintain a sombre expression and refraining from pointing out names and excitedly saying things like, "I went to school with someone with that name!", all I wanted was to get a big beer and sit down for a few hours.
* I am very naive and do take things literally, although I also tend to be a sarcastic person. Regarding expressions, though, if I haven't previously heard them and had them explained to me, I am perplexed. I had an ex tell me once that he was "wearing his heart on his sleeve" and I had a picture in my head of a t-shirt with a heart patch sewn on--or worse, his actual heart. I called a friend and asked her if she knew what that meant before replying to him. "Open mouth, insert foot" just makes me feel queasy. Feet are gross. I can't think of anymore right now, but I always have to ask what they mean.
* My current boss is extremely sarcastic and I can never tell the difference between him joking or being serious.
* I have a hard time approaching authority figures or people who seem "important;" they all make me very nervous and sometimes elicit my stuttering problem.
* I also have a savant skill for remembering how to spell--and correctly pronounce--obscure last names. When people call my office and automatically start spelling their names to me, I become quite literally pissed off. Like, do you think I'm a moron just because I answered the phone? I usually cut them off and say, "Yeah, I already found you and am reading your account notes as we speak."
* Just a week ago, while cooking pasta, I became so frustrated by this stream of questions my bf was asking me that I threw the wooden spoon, sat on the floor, screamed at him to "shut up!" and covered my ears. He got all pissed off and told me to "act 30, not 13."
* At work meetings, I can't stop putting my arms out to stretch. I also tend to point at people randomly and giggle. Another thing I can't control even though I realize I look like a frickin' weirdo while doing it.
* My voice also can get uncontrollably childlike when I'm put on the spot in front of a group. And while talking, I start doing the outstretched arms thing again.
* Hyperfocus: I took a creative writing class my first year of college. I had to write a 10-page short story. Turns out I can't write fiction, so it ended up just being a memoir in disguise. It took 4 weeks of all-day writing where I would lose track of time and forget to eat. I would spend all day on one paragraph... By the time I was finished, I weighed 10 pounds less and abruptly changed my major.



JulieClare
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02 Mar 2015, 9:54 pm

Hi, my name is Julie. I have very similar traits as you! I am 20 years old, and I was diagnosed with PDD-NOS when I was 17. Life is constantly a struggle, as I was told that I was not "doing things the right way" and that I was "weird." I struggled to keep friendships when people couldn't understand me. I had a hard time doing things that most people thought was easy. All through my life, I have visited doctors who diagnosed me with "anxiety." That wasn't the full issue. Finally, after 5 stays at the behavioral health hospital, my case was given to a neuropsychologist. I was tested for 2 days. They made an 11 page report about my diagnosis but the big one was PDD-NOS. It's something I've had all my life. I go to college, have a part-time job, and have a supportive boyfriend and family. I couldn't ask for more. I finally accept myself that I have Asperger's and I look forward to helping people on the spectrum when I'm a psychologist. It was a hard road to be finally diagnosed, and doctors don't always have the most up-to-date information. The most important opinion that counts is your own and your loved ones. Going to a specialist may help in getting diagnosed, because regular doctors still don't understand women on the spectrum. Feel free to talk to me anytime, if you have questions about the diagnostic process. Thanks for allowing me to share!