I joined this site a little while back and I've been afraid to post up until now.
But you know what, screw it. I don't know how many of you will read how much of this (I tend to ramble on) but I'm going for broke and writing it all out anyway. I'm going to act for now on the assumption that the significant amount of correlation I've found isn't a product of wishful thinking and be willing to take another look at things if the diagnosis doesn't back me up in the end. I'm tired of feeling alone.
So yeah, where were we?
My head keeps telling me what most other people pretty much always have: you're just making excuses, you could do so much better if you would just quit being so overly sensitive about everything.
I've been smart enough and lightly afflicted enough with whatever it is that's going awry upstairs me that I've always been able to get by in life. Well, to be honest I guess that's mostly if by 'getting by' you mean in the sense that cities which Godzilla has stomped through 'get by.' The devastation isn't complete, there's usually some area's that come through mostly unscathed, life goes on.
Yep, there's been a little cause for concern. But the symptoms haven't been 100% obvious, I also definitely have ADHD which I only recently started getting treated for (wasn't really willing to believe that one was true either until I started taking meds and they worked amazingly well).
The thing is, I'm 41. Neither ADHD or Aspergers/PDD were a blip on anyones diagnostic radar when I was growing up. Hyper, distract-able kids were thought to have been given too much sugar or something and either you were autistic enough that it was impossible to miss or no-one really had a good explanation for you. I've also had problems with drugs and alcohol and I ended up getting sober and doing the 12-step thing for a bunch of years so I had that label to paste on everything.
Now on that front, "Outside issues" aren't really something you're encouraged to talk about in AA. Well-intentioned people in meetings who have no business doing any sort of diagnosis are all too eager to say 'you're just an alcoholic, you're not any different, quit being terminally unique.' Don't take this to mean I hate AA, I don't by any means. The tools I've learned there and the support and patience that have been granted to me are invaluable. I just wish I would have trusted my intuition a little sooner when that little voice in the back of my head kept saying 'hmm, something's not right here. . . one of these things is NOT just like all the others.' Truth be told, I'm not sure I was ready to consider this until I had really beaten the notion that everything would 'turn around and be ok any minute now' well and truly into the ground.
So, why am I here?
Well, although a lot of things fell neatly into place once I finally started taking medication for ADHD, others didn't. In fact, some new concerns came up. Parts of me I hadn't seen for years started coming back to life now that I wasn't beating them into submission because just to get by. A lot of them I'd all but forgotten, I'd been so consumed in chasing after outside distractions that there hadn't been any space for them for years. I also took some time and asked my mother a bunch of clarifying questions about my childhood which brought back more memories and stories I'd never even heard before
I spent some time on an ADHD message board and started reading other people mentioning some of the characteristics I was seeing and they seemed to point towards some sort of spectrum disorder. There's a whole bunch of things that came up that fit but in the interest of not making this a novel I'll keep it brief:
- I don't seem to understand other people's emotions and how to react appropriately very organically. Its almost like I need to run the raw data I get from interacting with them through a translator to understand whats going on. If I can find a way to relate to what they're experiencing its much easier but its like I have to match up what they tell me almost piece by piece with my own experience to 'get it.' It really doesn't seem like most people have to do this kind of jumping through hoops or at least the process for them is much more instinctive/seamless
- Socializing and having friends always been a challenge. I learned in high school how to fake it to some extent but developing and maintaining and kind of real relationship with any but the most patient and forgiving has eluded me.
- My default ways of speaking/thinking/writing are often very clinical and impersonal. I don't have a lack of inflection but I find I often have to put in some effort to make what I say or write more 'other people friendly' and less like a lab report.
- Growing up, I had a sensitivity to physical and environmental stimulus bad enough that my parents gave up trying to get me to wear normal clothes or eat foods/engage in activities I didn't like. They also had to get rid of our tv for a number of years. Having any show on but Mr Rogers tended to make me melt down from over-stimulation. This is a lot less evident now but still definitely a part of my life
- My interests are limited but If I *am* interested in a subject I tend to obsess about it and gather every shred of information I can. This is a quote from an excerpt about Aspergers that fits me to a 'T': "Children with AS want to know everything about their topic of interest and their conversations with others will be about little else. Their expertise, high level of vocabulary, and formal speech patterns make them seem like little professors." Usually this happened as a child and still happens some as an adult with whatever my current obsession is. I've learned the hard way over the years that usually no-one I talk to is ever as interested in the given subject than I am. Its still a struggle to hold back.
- Routines and familiarity are very important, almost more so now as an adult though. For example I usually will find one thing I like on a menu at a restaurant and then order that every time rather than risk disappointment or a bad experience.
That's the basics, I could list another 15-20 more but this is already way long and its late at night.
So, then I took a few online tests:
The Autism Spectrum Quotient (AQ) test (Baron-Cohen et al., 2001).
If you score 32 - 50, you might have AS or HFA.
Score: 42
Your Systemizing (SQ) and Empathizing (EQ) Quotient Test Results
Your Score
(EQ)14
(SQ)95
Extreme Systemizing
The Broad Autism Phenotype Test
Autistic/BAP
You scored 114 aloof, 114 rigid and 110 pragmatic
You scored above the cutoff on all three scales. Clearly, you are either autistic or on the broader autistic phenotype. You probably are not very social, and when you do interact with others, you come off as strange or rude without meaning to. You probably also like things to be familiar and predictable and don't like changes, especially unexpected ones.
Highly sensitive test:
14 or more to qualify
My score: 26
Aspie Quiz
Your Aspie score: 183 of 200
Your neurotypical (non-autistic) score: 29 of 200
You are very likely an Aspie
Maybe this should be sufficient but its like I still can't quite bring myself to just accept it, even though at this point it would be a relief, not a bad thing at all.
I mean, the evidence is pretty strong and I certainly could just proceed with this assumption but more than anything else I feel like I need someone who actually is an authority to agree that: no, I'm not making this up. I've spent so many years being told and then telling myself that the problems are 'all in my head,' I hardly know what to believe anymore sometimes.
Therefore I've been looking for someone who does ASD diagnosis in my area (SF Bay Area). I feel like I can't really relax and be ok with it until I do that. I've sent out a few emails, talked to a former therapist but haven't found someone yet.
So I've been circling here, afraid to land for fear that I don't really belong, that things haven't been bad enough for me in terms of outward symptoms. Or that I've fooled myself again into thinking I have the answer when I really don't. That people won't accept me here because I've made it this far in life without a diagnosis, or that their symptoms have been more severe.
Then tonight I watched the movie about Temple Grandin and although the specific challenges and severity haven't been the same I could identify wholeheartedly with thinking and feeling so differently from most other people, it was quite painful. I certainly don't have a photographic memory but I build exploded diagrams and relational models in my head of how concepts fit together and where the connections between things are. Things that make perfect sense to me are often near impossible to explain to other people, not because they're fabrications but often because people lose patience before I can get to the point or demonstrate how the connections I'm trying to point out make sense. Or I talk so fast and excitedly about my areas of interest that it makes people uncomfortable and less likely to listen even if they might have been interested at first.
So for now, I'm going to act like I belong here, because even if I don't have someone's seal of approval (for whatever the f that's worth anyway) why the hell do I have to keep standing out in the cold, by myself.
03 Apr 2012, 4:33 am
