Tuesday, October 6, 2015

Why I Wasn't Dx'd as a Kid, and Why I Was Now

It's funny, there are so many things I figure I'll end up writing about but when I sit down and think "let's write a blog post" it can be difficult to decide which story to go with.

I say "story" because right now, only 6 days after being diagnosed with Asperger's at the late age of 42, the majority of things I've been pondering lately are anecdotes from my childhood that turned into symptoms/reasons for my diagnosis upon recollection and sharing with Dr. M.

It's funny, I always knew I didn't fit in and was different, always knew people generally don't like me, but never knew there was a diagnosable issue, and certainly not one that wasn't an outright mood disorder (I've had problems with depression and anxiety since I was a teen but the other problems have been around much longer, so I always figured the depression and anxiety were legit reactions to the stress of school and of having other kids not like me.. and surely in part that's true. But it's not the whole story, turns out).

It was easy to be confused about it, I think, even for my mom (a single parent after the death of my father when I was very young). After all, I talked at a typical age, and despite being a toe-walker who tended to constantly have bruises and not have a very good sense of where my body was in space, I was generally a flexible and active little girl. In fact, I was so "precocious" that I even largely taught myself to read and grew up hearing the story of how, when I was about 4 years old, I read the Charlotte's Web chapter book all by myself. (I didn't actually know what the word "precocious" even meant until I was an adult, I only recall my father telling me I was precocious and me being so young that I replied "yes Daddy, I petty-coshus!") All of those facts combined meant that I seemed ready for preschool at an early age, and since we'd just moved here from another state I'm sure it also seemed like a good opportunity for me to meet other kids, so I was enrolled in "nursery school" when I was only 3.

I recall crying terribly when Mom left me that first day. Nobody asked me why I was so upset, the teacher just assumed (I guess) that I was afraid to be separated from her, but really I had an itch on the bottom of my foot and was wearing mary janes with a buckle on them and couldn't remove my shoe to scratch the itch, and it was driving me so crazy that I was crying. Crazy the stuff kids remember.

But anyway, I have always had a knack for reading and tossing stuff around in my head and regurgitating it in writing, which meant that I was always pretty good in school at almost everything since almost everything had a textbook that I could read for info even if the class time was spent with lecturing or chalkboard demonstrations (which also worked for my learning style as long as I could write down what I was hearing / seeing - the act of my eyes taking in written words is how I make the best memories, personally). Whether I read a textbook or write something and read it as I go, either way works. I had no issues whatsoever in elementary school because this was understood about me, I guess.

Middle school was a pain in the ass because of my accelerated English class teacher (I was always in accelerated english - reading/writing, ya know).. anyway that teacher would get angry at me if I was looking at my paper and writing on it while she spoke. She would go over the test or homework and I would write the correct answers if I had made a mistake, or I would rewrite the whole test question as a statement that contained the right answer, and she would call on me randomly in an attempt to catch me not paying attention... one day in particular she got really angry and asked me what I was doing when she kept calling on me and I kept answering correctly, yet seemed so distracted looking at my paper with my pencil moving the whole time. I explained that's how I learn best, and she hollered at me in front of the other kids about following her rules and being rude. It was the only time I ever cried in school, itchy foot aside. Well no it happened one more time MANY years later in college, but I'll save that story.

Anyway, let's see if I can back track from this tangent... ah yes, reasons why nobody picked up on the Asperger's. Well I was born in 73 and was in the class of 91 and so basically there was no Asperger's back then.

But to break it down even more, it's pretty simple - my dad died when I was 4 and everyone at nursery school knew it, and the teachers started right then with making excuses for my behavior on my behalf - the shyness was because I was a girl whose dad died in an age where nobody's parents were even divorced, let alone dead. The moodiness - girl whose dad died. The seclusion - girl whose dad died. Resistance to change - girl whose dad died. Later, the cutting - girl whose dad died and who didn't process it properly back then. Later, the constant stream of boyfriends - girl whose dad died and didn't process it properly back then. The real reasons - aspie, aspie, aspie, aspie. (edited to add: I'm not saying cutters are all Aspies, or Aspies are all cutters. But the depression and anxiety and overwhelming need to concentrate all the pain to one central sensory-based location I think do all have a tie-in.)

Even the boyfriends - the reason was so simple to figure out but everyone assumed it was a daddy issue, or just teen hormones. Nope. It was because I was a very symmetrical girl with pleasing physical features, which prompted boys to pay attention to me. It was the first time anyone ever paid any attention to me. The first time anyone seemed to like me. First time anyone showed real interest in me (family aside of course). I thought I was finally making friends. I didn't understand that when each "friendship" didn't pan out, the boys were going back to other boys and alternately making up stories which probably revolved around sexuality, or else were going back and saying I was a bitch. So high school was complete hell for me, as the "stuck up slutty bitch" (who hadn't actually ever even had sex when the rumors began, and whose "resting bitch face" was what she thought of as a poker face, having been created in first grade on the day when everyone in class had the assignment of making a Father's Day card and I didn't have a father and I didn't want anyone to see me upset, so I tried to come up with a neutral face that became default and which I only learned was "bitchy" when I was in my 30s).

I just went off on a tangent again, didn't I? This will happen. May as well get used to it with me.

Anyway, since Asperger's wasn't a "thing" yet until after I got out of school, and since I pretty much immediately got together with the guy who I ended up marrying, got pregnant at 19, had my oldest at 20, and promptly was diagnosed with severe post-partum depression and treated with meds that gave me anxiety as a side effect, my entire experience with doctors from age 19 to 42 was colored by the idea that my "problem" was anxiety and depression. Since I was married and sometimes disgruntled with the relationship, people made it a habit of telling me that the only other thing wrong with me besides anxiety and depression was a bad relationship and "stockholm syndrome" which always baffled me. Of course now I realize they were probably referring to my extreme resistance to change even in the face of a difficult relationship, and misinterpreting it (once again, the real reason was: ASPIE. Don't like change, and shockingly loyal - that's me).

My oldest son had some issues around age 4, during preschool, which prompted us to have him assessed for ADHD. Part of that assessment was to see if he was acting out because of being bored, so they IQ tested him. Turns out he's incredibly bright. But there's the ADHD tie-in which is probably part of why I asked myself so many years later if that might be part of "my problem", which became more obvious to me once I hit the age of about 35 and my hormones began to change and I became more self-aware. By that point I'd been diagnosed with depression for about 12 years, had been on meds for over 10 years, and then had been off meds for a few and felt that I finally had a handle on recognizing my emotions and knowing whether I was sad ABOUT something, or depressed due to a chemical imbalance, or both, at any given time. So it became easier to sort out the fact that there was still something else going on that wasn't quite right.

It likewise became clearer and clearer to me the more my husband would say things like "what's your mental problem??" and "why can't you just be normal for once?!" and one time we were on a plane to Florida and I had asked the flight attendant something and then replied to their response by telling a short anecdote from when I was little, and the flight attendant gave me a strange look and then my husband interrupted to say "I know, she's something else, isn't she?" with a terribly disgusted look and a tone of voice that made me feel like I was a five year old trying to give someone a handful of poop as a gift or something.

But honestly, even then, I assumed he was just being a dick. I didn't realize that maybe it really WAS me that was the problem.

I didn't actually figure out that I might have Asperger's until about three years ago (or rather, the wheels weren't set in motion for me eventually figuring out that I might have Asperger's until about three years ago), when I found out that an extended family member was dying of cancer. My dad had died when I was barely four years old, and my mom gradually had let ties to his extended family sort of fade away, so I hadn't grown up knowing that side of my family but I did have clear memories of this family memer (who was dying of cancer) being someone who I loved very much and spent a lot of healing time with just after my dad died, so I wanted to reconnect.

One of my siblings was a big facebook user, and had reconnected with many of them through facebook (since he was older than me, he had memories of cousins and aunts and uncles and things that I had no idea about, and sought them out). He encouraged me to find my old login information (I had made a facebook when it first came out but then had never used it) and reconnect to family like he had. I did, and once I knew this family member was dying of cancer but was going to the upcoming family reunion several hours from my home, I decided that I would go to this reunion as well and represent my dad's branch of the family tree while getting to see this family member one last time.

But I was really nervous about it, knowing that I get overwhelmed with stuff pretty fast and always really need to have time alone to "decompress" (a word I thought I had invented for this purpose - I would find out later that it's actually a pretty common expression among Aspies). I expressed this concern to a cousin who I was chatting with on facebook and she laughed and said "you really don't know much about this family, do you?" ... long story short, I was one of over a dozen relatives who spent most of the reunion in "the quiet room", which they specifically set aside at reunions for all of us who are "like me". And there are TONS of us in the family. We all sat there on our iPads and computers doing our own thing while watching each other out of the corners of our eyes, and often we were actually texting and chatting on facebook while sitting in the same room as each other, after some of us flew for hours from other parts of the US to be there together. LOL. I didn't know then that any of this was decidedly Aspie behavior, I just felt like I was finally HOME. Comfortable. At ease in my surroundings. With people who "got" me.

I figured it was because my dad was a computer programmer with IBM, and so were some of his siblings and some of their kids, and heck I had a degree in computers as well, so thought we all had similar personalities, that's all. Yep. That is sort of accurate, anyway. Most of them probably don't cross over from eccentric personalities into Asperger's, in fact. But I kept having a nagging feeling that mine did... but I didn't know what it was that was nagging at me quite yet, or rather - didn't know what the name for it was. Just that this felt right and the rest of my life felt wrong.

The tipping point came many months later when I found out that four separate children of three separate cousins all had been diagnosed with Asperger's, autism, or PPD-NOS. (There is another child of another cousin who I really believe is an Aspie as well - like I think his parent/my cousin probably is - but what do I know? It's definitely NOT my place to say so, and I'm not into armchair diagnostics anyhow. Armchair DETECTIVE, sure. But missing persons cases are one of "my" subjects, and so I will not get started on that subject. You're welcome.)

Anyway, I wanted to know about autism before spending time with one cousin's children, because I wanted to be understanding of the child and not cause any sort of distress or issues unknowingly, so I read a bit about it and realized "oh this is what Rain Man had in that movie, and what the little boy had in the book that my best friend and I loved in school". (In that book there was an autistic boy who was nonverbal but communicated via ESP. It was a mystery story for younger kids; I have never been able to remember the name of the book). A year later, after another family reunion, I decided to read about Asperger's as well since one of my (extremely shy) kids had really hit it off with one of my cousin's kids, who is an Aspie. I figured, let's learn about this so that we can be sensitive to his needs when we see him next.

Well, when I read something I don't just read a bit. I'm an all or nothing kinda girl. So I read, and read, and read some more. I found videos by someone I'd never heard of before (but came to love watching) named Temple Grandin. I watched many. I started to realize that I had some things in common with this kind of thinking. Around this time all of those facebook quizzes (which Disney princess are you? what color is your aura? what country should you have been born in? etc) were becoming popular and were all over and somehow I came across one that said "what is your AQ?" and I clicked it and it said it was about Asperger's. I thought "huh, interesting, let's take it!" .... that led to looking for every single quiz I could find online, and checklist, and questionnaire. I kept getting results that said I was very likely an Aspie. But some stuff didn't feel right to me. And other parts of my personality didn't match up quite right.

Then I found some blogs and articles about FEMALES with Asperger's.

Lightbulbs started going off. So, so many lightbulbs.

One page even had a  list that sounded 98% like it was written about me. Meanwhile, my social anxiety was flaring up again in more debilitating ways that in the past, and the depression was creeping back in. I felt like maybe after 12 years off the meds, maybe it was time to get some help again. But I didn't just want to go to my GP and ask for the baby dose of liquid Prozac that was the only thing that ever helped me all those years ago, after trying all of the new meds that became so popular throughout the 90s, when I was first diagnosed and medicated for depression. I wanted some real answers, some help to not be a person who everyone hates. So I asked for advice on who to see about an Asperger's assessment/diagnosis on Diary of a Mom's Community Outreach page. (You wouldn't be here if you didn't read her already, I'm sure. Nobody would ever read me before/instead of her, she's awesome. But if somehow you didn't know that, her link is in my list of Blogs I Love over on the right of the screen there. Or maybe it shows up someplace else if you're on a smartphone - I don't have a smartphone, so no clue there.) Anyway, I got some good advice, spoke to my GP about who could assess me, came home, called the person he suggested, and the rest is history as they say.

And I've gone on long enough with this post. Which is funny because I'm not sure when I switched over from "I don't know what to post" to "this post is too long". But, again, that'll happen with me. You just need to buckle up and sit back and enjoy the ride. Hope you'll stick around.

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