To diagnose, or not to diagnose

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[I'm sorry this is so long, but it's been bottled up for a while.]

I'm 35 without a diagnosis, but I have found a lot of the books*, articles**, forums, etc. have proven to be valuable resources for self-improvement. I don't believe I am "clinically detrimental," which is how I look at what kind of assistance I need. I know I'm highly functional. I've suspected for over 5 years now when I first heard about Asperger's and had a diagnosed autistic/photographic memory/synesthete friend tell me, "Oh, you're most definitely on the spectrum," but I left the idea at that.

I was raised as being a bit odd and weird, but otherwise NT. Absent-minded scientist, half alien/half robot, in her own world, OCD-to-a-tee - these where how friends and family have described me, usually in a teasing, but otherwise proud manner. I think I was very lucky growing up, because I had a ton of support, teachers stood up for me in class when other students protested my questions, my parents have encouraged every whim and interest I've ever had (they said I could do anything I wanted, and I decided I wanted to do it all - I have WAY too many interests), and I can count on one hand the number of times I was really teased and made fun of for my weirdness (most of it came from my sister for how I dressed). I otherwise kept to myself and never had issues with bullies. (Although I had two abusive boyfriends in my early 20s, they were abusive of their own cognizance, not because they were picking on me directly - they would have been abusive to any girlfriend that didn't bow down to their wishes.)

I have been enmeshed towards working on my symptoms for the past year, trying to understand how someone could possibly call me an evil, manipulative sociopath to my face, when I knew that wasn't the case. I didn't know where else to start, so I assumed this person was correct, especially when a close friend of mine sided with her and told me I needed to seek psychiatric help (all because I said the wrong thing to person #1's husband and both she and my friend said it came off as though I was trying to sabotage their marriage and steal him from her, which I wasn't).

I started doing a lot more research into improving myself, beginning with the base idea that maybe I was a sociopath and that I was trying to steal her husband on purpose, so what would my purpose have been for doing such a thing? (Yes, I actually had to make those assumptions in order to follow that train of thought.) In her verbose name-calling emails to me, she spelled out many examples of how I had been behaving around others in my new-found (~5yrs old) social circles. (I had only three friends and some school acquaintances prior to getting involved in this huge [easily 50+ people] social circle.) No one had ever told me I was behaving abhorrently before, and I had been completely oblivious. I was later told it was because people were trying to be nice by dropping subtle hints so as not to hurt my feelings - yeah, that didn't work. I gathered just enough additional testimony to realize that everything she said in the emails about how others in this circle considered me was true. One by one I began to look at the examples and extract reasons for my behaviors, assuming that I was enacting these behaviors on purpose. By the way, this is never a good idea.

I started looking into various "remedies" and theoretical modes of thought: meditation, balancing one's self, Tao Te Ching, egoism, victim mentality and related defensive mechanisms, lack of empathy, emotional alarm clocks, cleaning house, fake versus real personality, over-romanticizing and over-active imagination, false expectations, materialism, self-defense class (which I'm still in since last spring and LOVE), and the list just goes on. I have followed each of these paths, finding out more about myself and how I think each step of the way, but never quite reaching a destination.

In early fall I made a second major faux pas social blunder that added fuel to the fire, gave an opportunity for the married woman to state, "Everyone knows about you now. They've all compared notes and discovered that you've been playing them all this entire time.", and has now ostracized me from that entire social group. This has turned into a god-send as I no longer have to deal with such an overly-emotional drama-ridden group. I thought I was getting along with everyone fantastically, but they now all believe I'm a home wrecker. A good friend of mind says this is called "losing the narrative," and I have lost it big time, so I've given up trying to fight it. If anything, I have a good idea of who my real friends are as a result of it.

Is this how people think of me when they discover I'm wearing a mask in order fit in? That I'm "playing them"? I look at them and I can see their masks. I don't understand the difference. Sometimes I wonder if they are not used to seeing what's behind the mask, because they never seem to take their own masks off.

Then, in early October 2011, I finished reading a book called Brain Tricks and picked up The Unwritten Rules Of Social Relationships. The first chapter alone completely floored me. I had been so focused on recent events I wasn't considering the whole of my history. The first couple chapters made me cry because of how many examples Temple and Sean gave that I could either semi-relate to or have direct examples of my own to match. I could see areas where I didn't match, for instance I never threw temper tantrums and I could understand some of the social examples they gave, but all of the thought patterns, including rules lawyer and black-and-white thinking, were there. The 10 rules given fell in line with some of the previous work I had done with the self-help topics I mentioned above.

An interesting aside: Since Nov/Dec, I have run into 5 sets of parents each raising autistic/Aspergian children. They enjoy getting advice from me because they say I seem to be able to describe their situations better than some of their doctors, and I have excellent resources to share. What have I gotten myself into?!?

So, all of this leads me here.

I'm left wondering what good getting an official diagnosis (all because a couple people misread my intentions and griped me up one side and down the other) could possibly offer me that I'm not already finding out via my own self-directed learning.

[PS - I hope none of this comes off as sounding condescending. I feel especially lucky, but by no means proud.]


*The Unwritten Rules of Social Relationships by Dr. Temple Grandin and Sean Barron has helped me the absolute most.
**Reading articles by John Scott Holman has helped to build my self-esteem greatly. I'm glad he has joined with the WP ranks.
(I like to give credit where credit is due.)

Last edited by NicoleG on 12 Jan 2012, 3:02 pm, edited 1 time in total.

In my experience, there's not a whole lot to be gained from getting a diagnosis.

People don't understand; most of them don't want to learn. You can tell them all you want, they will either tell you you are bullshitting or start treating you like a freak.

While there doesn't seem to be a whole lot of good help out there-- especially for very high-functioning adult females-- there are a whole lot of downsides to having a formal diagnosis. Like the fact that it can (and will) be used against you in hiring and legal situations (at least, if you live in the States; in Europe you might be a little better off).

Asking for professional help has caused me more problems than it's given me assistance. Even the people who didn't screw me up more-- I've posted and re-posted my stupid horror stories-- basically said, "At this point, it's a personality trait. Accept it, live with it, you'll be OK."

Find better friends. Women, it seems, often really really really suck.

But we, here, try really hard not to, and we've been where you are. We can be your friends.

I think I've already come across that, but in much worse terms.

Another quote from the scorned wife: "The only thing you're succeeding at is f*****g over everyone in your life and getting better about justifying your actions in your own mind and heart."

Being called a sociopath while trying to make sense of what just happened around me seems to somehow encapsulate both bullshitting and freak in one fell swoop.



That's more or less how my life was going prior to delving into this social group. Things were okay, and I was fine. I never questioned my odd behaviors.



Indeed.

Thanks for your insightful post. I can relate to your experiences in so many ways. Hope you don't mind if I hit you up for some advice now and then!

Sure. I have to be careful about advice, though, because sometimes I have a lot of insight, but I'll still be far off the mark. I'll come up with logical answers, but they will all be off the wall answers as I might miss the subtlety of the situation and ignore possible lower-level options. I've been practicing trying to preface things ahead of time, which is not easy, because there are times when I very much feel like a know-it-all.

My input on this thread is actually a good example. I feel pretty silly that I didn't think of the more simple possibility, but that doesn't mean my input was a complete waste.

I might, then, ask you to expand on some of your experiences and the things you have learned. Like fake/real personalities and meditation (no relation). No matter what I'm doing, it always lacks a level of realness to me. I'm also interested in trying meditation.

I can talk all day long about this stuff. Feel free to PM or email me, if you'd like.
(trickykty - I've noticed this site is swarming with bots - ick - via gmail)

When I finally agreed that something was wrong with me, I also decided that I would document my journey publicly so as to force me to stay out of, and not hide behind, my defensive shell any longer. Most everything I wrote in my blog related to all of this is tagged AboutMe, Thoughtful, or HeadSpace, with the HeadSpace tag being used almost exclusively for working out the deamons in my head. The first related post starts here (Oct '10), and the first post in which I'm diving 100% into accepting I need fixing is here (Feb '11 - almost a full year now).

All I ask is that you keep in mind I never associated Asperger's to myself as a potential culprit until after I started reading The Unwritten Rules of Social Relationships in Oct 2011. (I still thought that the description of Asperger's was fitting for me, but I didn't exactly see it as culpable for my current predicament. Like I mentioned above, I started off assuming the worst - that I was an emotionless, manipulative sociopath. I attached to the thoughts that others put into my head first and foremost, and then I spent quite a lot of time proving those thoughts false in my own mind, including a lot of input from real friends not part of that social group, before moving forward.)

By the way, meditation by itself sucks if you don't have something to focus your mind. I never sat and just meditated, but instead took my time with helpful books and such, and just spent a lot of time reading a few sentences and then thinking about what I read, how it affected me or how I could use the info to better myself, etc. To me, putting together jigsaw puzzles (one of my biggest interests) is considered "mind cleansing" meditation, and I can do that for hours.

I've been wondering about this too. I have my doubts about doctors' though.

I've been watching a lot of YouTube videos, both of Aspie people and of child development tools for autism. What I see is that the doctors are really good about providing tools for behaviors, but really poor at providing tools for thinking patterns. What this equates to is a lop-sided person who comes off as closer and closer to normal in behaviors, but still having a hard time processing through social situations (like myself). This is, I think, why people that don't know how my mind works thinks that I'm trying to put on an act and fool them into thinking I'm normal. They think I'm trying to manipulate them into accepting me when really I'm trying to manipulate myself to fall more within their rules of social conduct. This is what upsets me the most when I still get "caught", and instead of getting praise for being able to go so long acting normal, I get yelled at for trying to manipulate others.

I'm at the point that I question if there is a difference, and if not, then how much should I really be trying to fit in. Maybe by trying so hard I really am also, in the process, trying to manipulate them into seeing me how I want them to see me, and nobody wants to be manipulated. This is where having a psychologist to talk to might help, but I feel like I'm smart enough and have enough understanding of both cognitive psychology and my own makeup that talking things out with like-minded folks will be more beneficial for me.

I agree with find better friends..........but I am a woman and I am pretty much done with women as friends. I am NT and can not seem to get things right. I can't be feminist enough, say words that use to be except-able. Guys will clue me in, the ladies have kicked me a lot.

Diagnosed: definitely. Thinking you're AS because you fit a list of traits isn't the same as knowing. Y'never know, you may be something else or there may be other things included "in the package".

Nicole,

Reading your post here causes me to feel what I would self-describe as empathy towards you. Does that mean I'm not a "real Aspie"? Or does that mean I don't understand what "real empathy" is? Who knows!!

Either way, Aspie or NT, we are designed to be deeply connected with other people. Superficial friends aren't worth wasting your efforts. Ask God to direct one or two people across your path with whom you can be real with each other.

Bob
Your Aspie score: 94 of 200
Your neurotypical (non-autistic) score: 90 of 200
You seem to have both Aspie and neurotypical traits

Nicole: first off, a lot of what you posted resonates for me....second, it's been my experience that if you do share "aspie-ness" with the people who are attacking you, the actual response is "Oh, an EXCUSE. Which I'm sure must be a LIE."

Knowing that I'm an aspie helps me to make sense of my life. I spent over 50 years being told that I was obviously being deliberately contrary and evil, by clear choice, for no reason, because nobody could have those kind of verbal skills / history or a high IQ and be as socially clueless as I purported to be. CLEARLY, I understood all the social code and deliberately violated it because I enjoyed being an a**hole.

Inside, I always knew that wasn't true, of course. But when you have a father, two husbands, and a number of other people in your life spend that many years insisting to you that it's true, it's mind-boggling how nearly you believe it - and you don't realize that you've bought into the BS until you fall into description after description of being an aspie and you could swear that whoever wrote this up had hidden cameras on you since birth.

And you realize that you are NOT crazy to believe them all wrong.

I started out, toe-in-the-water-ish, tentatively putting Asperger's out there with some of these people. And got a toe-in-the-water sort of "you're making up excuses" response.

And I figured something out. *I* know I'm aspie. I don't need a doctor to tell me that. I don't need other people to buy into it to make it true. It doesn't matter if they believe me or not - and it doesn't matter if they know I'm aspie or not. *I* know. And it's made a major difference in my self-esteem and my sanity.

And I guess I have to cut my dad and at least the first spouse some slack - nobody'd heard of Asperger's when they were dealing with me. Faulting them for not "getting" that I was aspie when none of us had a clue "aspie" existed is just as unfair as the way some of the other folks treat me. (Besides, both of those people are now dead: there's no opportunity to discover whether they'd be jackasses about it or accepting. So why not give them the benefit of the doubt and believe they'd be accepting?)

Yes, I've been told that I was deliberately saying mean things. "You're smart enough - you should have known better." I can't tell you how many times I've heard that in my life. Sure, if I said something then I intended to say it, but I wasn't intending the consequences of it. The "joke" didn't play out that way in my mind, so I was dumfounded by the results. I've learned that trying to reason out things out loud is what gives others the impression that I'm trying to justify my words/actions, when it's just me trying to make sense of it overall. I've found a couple people with whom I can work on reasoning things out without it seeming like I'm trying to come up with excuses. It requires someone who truly understands that I just don't get it and I need help figuring it out.


While I know it's not an excuse, I also know that it's better to simply say, "I'm sorry, but I just don't understand," regardless of the reason as to why I don't understand. I've only found a small handful of people that are accepting and accommodating of a reason. Others view giving a reason as meaning that I'm not interested in fixing the problem and making it better for in the future, which is incorrect.

I finally got my diagnosis today, and it's SO nice to know for certain, rather than spend the rest of my life wondering if maybe I'm just imagining it. If you can afford it, I think it's worth doing.