Discovering AS - the piece of the puzzle that finally fit...

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Hi all, this is my first post and I look forward to being more involved here in the future. I’m also interested in feedback from others on what I’ve written below. I’m going to try and keep this sort, as I can typically get pretty long winded when I write. So there’s a long and short version of my story, and I’ll post the long version below in this thread.

At present, I’m really just trying to figure a lot of things out... there is a lot to take in. About a month and a half ago I was referred by my general doctor to look into what he believed might be signs of Asperger’s. At first, I sort of dismissed it, but when looking more into it one day I realized it was the very honest answer to explaining my childhood, teenage years, and it even described me through today at 32. For the first time, something just “fit” about the 'label,' and it has led me here where I’ll share my story.

In brief, over the last two years, I’d begun to wonder if my current diagnosis, provided by my psychiatrist a few years ago when I was going through a divorce, was completely accurate. I’ve never felt like the personality disorders they used to describe me were really and truly a good fit with who I am. There have always been too many ‘holes’ that didn’t add up if that makes any sense. I know there's a lot of overlap and that mental concepts are hard to pin point and define, but still - something felt off to me.

So over the last month, I’ve made the rounds with my doctors. I’ve seen my primary psychiatrist twice, my psychologist three times, and I was referred to a psychologist specialist (who I also saw in 2010) for another in-depth evaluation. I told him from the beginning that I was only looking for the truth, so that I could finally understand what makes me, uniquely me. We spoke for over an hour in this evaluation and this time, his initial conclusions lead to a very interesting result and confirmed what I’d already begun to strongly suspect. At the end of the session, he said in all honesty, though it had not really occurred to him in 2010, that I had a very strong case for Asperger’s Syndrome.

I’ve taken several tests since that appointment, some at his request, some I've found online... and will see him again in May to go over the next steps. Below are my test results so far (including some from my wife and immediate family evaluating me):

RDOS (AS) – 158/200
RDOS (NT) 49/200

EQ – 6/30

AAA (Self) – 49/50
AAA (Wife evaluating me) – 41/50
AAA (Mother evaluating me) – 38/50
AAA (Father evaluating me) – 39/50

My wife, mother, and father all scored NT scores when they took the exams individually. My younger brother also took the text and scored in the low 20's.

I’m curious to receive feedback based on what I’ve collected the last few weeks. For once, I feel like I’m on the cusp of discovering something really neat about myself – something I’d always suspected, but never had a “label” for. I won't lie, it makes me a little nervous to put all this out there, but I feel like this is really important.

I’m also concerned that the new DSM-5 is removing AS from the manual next month and how it is combining everything into ASD. I am worried, not because it will include everyone under a single diagnosis, but because a lot of folks with AS might get left out in the cold. I may be over analyzing this, but I’m curious what your thoughts are on that as well.

Many thanks,
John

OK, so having said all of the above, below is the longer version of my story, and some history...

Officially (using a series of tests in 2009-2010) I’ve been diagnosed with Avoidant Personality Disorder Anti-Social Personality Disorder.

I’m being treated by my psychiatrist for a few derivatives thereof, such as:
a.) Clinical Depression
b.) General Anxiety
c.) ADHD

This gives me quite the current cocktail of medications from this doctor, but I won’t get into all those here and now.

All that said - here’s why I’m torn on my current diagnoses. When I began both counseling and psychiatric treatment in early 2009 I had literally just started a divorce from my first wife. To say the least, I was an absolute train wreck and I believe that symptomatically speaking, I was showing extreme signs of depression and anxiety. I’ve faced both of those issues my whole life, and still do, but they were much more prevalent at that time. It took a while, but we finally found a medication that took a bite out of some of that; at least better than other medications I’d tried. Over time, and the years, several other medications have been added. ADHD was the major addition in 2010, and looking back to my childhood that is one of the clearest issues I’ve faced through out life. My doctor had me seek out additional testing, in 2010, from another colleague and that is when I learned about both the Avoidant and Anti-Social Personality Disorders. I had suspected both in some form, but that was the confirmation. I believe Borderline PD was a close third. Still, in another way, I didn’t believe they accurately described me… sometimes you just know something’s “off.”

In mid-to-late 2009, I was very fortunate to meet the woman who I’m now married to, as she was also going through a divorce. In an unusual way, we bonded on our common experience and eventually our relationship turned into a lot more than I think we both initially expected it would. Today I still suffer a great deal from depression and anxiety, but the medication takes care of most everything else. The recent addition of an SSRI has helped with depression, but has left me a lot more apathetic than normal. My work ethic, which is usually on hyper-drive, has been very lagging the last few weeks and this has caused some issues at work, where I’m a senior web developer.

Being innately curios, and still having a strange intellectual intuition that my diagnosis might be “off” a bit, I began doing some research. In the process I started watching some older home videos I was fortunate to have from the late 1980’s and early 90’s from when I was a younger child.

A few things immediately jumped out at me watching the home videos. I was incredibly loud almost all of the time. During birthday parties and other events I observed, I out spoke by younger brother (and anyone else present, including friends/family) ten-fold in how much talking was done, and at a persistently high and inappropriate volume. I also bounced all over the place, constantly moving and fidgeting (clearly ADD I presume). I also noticed I rarely made eye contact, and if I did, it was quickly with the camera, and then back to something else (sometimes even the ceiling or floor). When in small groups (always with people I ‘trusted’), I still noticed the tendency to keep a bit to myself, within my own space and preoccupation. Overall, nothing too telling, but it was still interesting watching how vocal I was at home. I was also very blunt most of the time – I was not afraid to speak my mind, even when it wasn’t really appropriate. I also took things incredibly literally.

I mention the ‘loudness’ of my youth because at school and other social settings, I remember being the exact opposite. In grade through high school I was very socially introverted and tended to be much of a loner until my late high school years. I always felt different from the other kids, from about third grade up, and I knew something about me was “different.” I was bullied a lot in both late grade and middle school, as I never really “fit in.” I was gullible and trusting and that got me intro trouble more than not. I tried to “act normal” but it seems like I always got along better with adults than I did my peers. In college, I was similar again, until near graduation. As a small child, and even now, I have noticed an intense interest and focus on select objects/ideas. As a child I would often get incredibly absorbed in topics like weather or specific parts of science. I loved dinosaurs and could regurgitate facts about them most people probably could care less about. How many adults or kids at age 10 care about the Latin name of Velociraptor or which era/period they lived in? As I grew older my interests shifted, though things like computers and weather/climatology remained a constant and I eventually graduated college with a degree in Geography focused on meteorology and climatology. It took me five years to get through college, as I spent the first four years in Engineering (Computer and then Civil). As I was not particularly interested in the topic/study of Engineering, I didn’t do very well in that major. Once I switched back to the sciences however, there was a total reversal of my study habits and grades. I went from having a D+/C- average to an A+ average. Ultimately though it was my hobby of web development that began my career, as when I met the woman who became my first wife, I dropped the plan of entering the graduate program I had long been preparing for.

Near the end of college, I was also briefly introduced to Hawaii. That introduction began a decade long obsession/passion (I don’t use that word lightly) with the islands. That passion/obsession continues today. I am fairly positive I know more about the islands of Hawaii than almost anyone on the Eastern seaboard – it’s practically been my life for 11 years now and has spawned many web businesses related to it. I’ve always been fairly entrepreneurial in nature, starting my first online business at age 20 in 2001. In any event, today I still work professionally as a Web Developer for a company near where I live. Developing websites has been a hobby/passion for about 14 years now. I also maintain a deep interest in specific portions of physics, like Quantum Mechanics, where I’m sure I regularly bore my family and co-workers with random facts. I usually have no idea if they are even interested until they tell me otherwise (and usually they aren’t interested).

I mention all of this for a few reasons… it’s lead me to wonder about my diagnosis. While I do believe I have anxiety, depression, and ADHD, I’m also beginning to wonder about some of the more hidden parts of my personality; in particular my tendency to not experience genuine empathy or truly understand things like others apparently do. I am very literal by nature, and I process everything at an intellectual level. I have a sense of humor (often sarcasm), which I believe I picked up over the years by observing others around me. I also like my routine… I get extremely uncomfortable when things generate or cause unplanned or spontaneous action on my part. I have an extreme sensitivity to both smell and sound in particular, though I’m also sensitive to touch and taste too. I literally cannot make eye contact with a person and listen to them at the same time, it’s impossible for me almost. Even with close family or my wife, it’s hard for me to maintain eye contact – unless I’m giving them a stare down when unhappy (usually occurs in what I call one of my “episodes”). These ‘episodes’ usually entail a lot of crying or anger on my part, and the energy can be directed either internally (at myself) or be externally (towards another person) depending on the situation. Once the “episode” runs its course, I’m usually better… they seem to occur when I have a lot of emotional disturbance within; like when I’m overwhelmed with a hard day of work or sensory input.

All this ‘stuff’ got my wife and I doing a lot of personal research and when my doctor mentioned Asperger’s Syndrome, I wisely looked into it. I had never heard of it until that time, but when I started to read more about it, I genuinely felt like for the first time I finally had an answer, a more formal “name,” in front of me that described much of my life experiences. It’s has always occurred to me that much of my anxiety is a side effect of the innate discomfort I have with social situations. My depression typically spawns from my fear of failure, not being perfect, and the like.

Last week I asked my psychiatrist to please have the colleague of hers evaluate me again, this time for any indicators or signs of AS. I had already spoken to my parents, and both very surprisingly said they had wondered about me at times when I was young and whether Autism might be a factor in my behavior. I have no idea why they never looked further into this, but it was the 1980’s, and AS didn’t even exist in the DSM yet. In any event, I was fortunate to get an appointment quickly and saw the other psychiatrist a few days later. By the end of our conversations, having gone over my childhood and teenage years – and into things today, he said in all honesty, though it had never occurred to him in 2010, that I had a very strong case for Asperger’s.

So the test taking has begun, and my scores (including scores from family members and my wife) are included in the post above.

Thanks again for your thoughts and insight,

-John