I’m continuing my typical all-consuming, comprehensive, look-at-it-from-every-angle approach to my exploration of an official autism diagnosis, with new information. And new thoughts and insights.
There’s always new information. And new thoughts and insights. Not quite enough for me to make up my mind, but I’m getting there.
I’ve known I’m on the autistic spectrum since early 1998, when the AQ test first showed up. I believe I first took the “paper” test — the PDF version without any sort of online form capabilities. If memory serves, I printed it out, filled it in, and tallied everything up… and came out around 32 or 34. A German version showed up online at http://www.autismusundcomputer.de/aqtest.html, and since I speak German, I believe I took that one, too. I could be mistaken, but I could swear there was an English version of this online, as well. But it may have been updated in the meantime, so it got subsumed by a more recent version — and the date of last change shifted beyond the 1997-1998 timeframe I’m searching in.
I’ve take a number of tests a number of times, and the results have always placed me on the autism spectrum. I wish I could find my results from way back when – I’ll have to dig around in my archives and see what I can come up with, because I actually collected a lot of data over the years.
I’ve also reviewed many, many of the criteria, and I fit them so well. It’s a little eerie, realizing that A) I’m not the only one, and B) that a misfit like me actually “fits” so well into a pattern of behavior and experience that I always thought was unique and “disordered”, so therefor needs to be hidden away from plain sight.
Finding this out has been incredibly freeing. Everything makes so much more sense now. And I want to believe that others are as thrilled as I am, to find that there’s an actual explanation for why I am how I am. I’m also thrilled to find that others don’t actually believe this way of being is a “disorder”. Actually any way of being can be disordered, when it’s so extreme that it keeps you from living your life and turns you into a vexation for the rest of humanity. People on the autistic spectrum don’t have that market cornered, by any stretch.
And that thrill has also been accompanied by the certainty that others will be thrilled, as well. How could they NOT share my elation at having an explanation for why I am how I am? How could they NOT be as overcome by inquisitive exuberance as I am, and NOT want to explore just what this means — for me and for everyone I interact with? I assume that having this information about me will of course help them make better decisions, to consider my situation more broadly and in a different light, than they would if I were neurotypical. I assume that they will factor in my autism in all their dealings, modulating their speech, being more straightforward / plain-spoken, being more detail-oriented, taking less offense at my manners, and taking time to explore the vagaries and intricacies of every decision, in order to choose the best route possible for interacting with me, with the least amount of harm.
I just assume that people like doctors and lawyers and police officers and other professionals share my same burning curiosity to understand the world… a world that includes me. And by extension, I just assume that they will take the time and have the ability to process the breadth and complexity of information I like to deal with, looking under every rock and overturning every possible stone, in order to suss out the best and most useful version of the truth that will serve us all best in our quest for knowledge and truth.
And as an extension, I assume that an official diagnosis of autism would help them better understand me, better factor in my situation, and provide them with valuable details about the most effective way to interact with me. That’s why I’ve been thinking an official diagnosis makes sense.
Maybe that’s yet another sign of being on the spectrum — that I believe other people can figure out what I’m thinking, and that they “get it” like I do… that they actually want to get it. Maybe it’s me being uber-autistic, thinking that people have the capacity to take in all the details and sort through the complexity, and take the time to consider and fully understand before leaping into action. Maybe I’m being naive again. Gullible. Far too trusting for my own good.
My standard assumptions about what people can and will do with information about autism, I’ve found, seldom hold true. Just because someone is in an advanced profession, with a ton of specialized education in their proverbial rear-view mirror and degrees hanging on their office wall, doesn’t mean that they have that same orientation, that same desire, that same unquenchable thirst for knowledge that I do.
And even if I had an official diagnosis, would they even know what to do with it? Would it work in my favor, as I’ve been thinking, or would it actually work against me? Would I get labelled as “disordered” by a clueless provider / official, looking for a quick and easy way to categorize and pigeonhole me? Would I get slapped with a diagnosis — and another — and another, because “that’s how autistic people are”… and then become an insurance risk in the process? I have to think about my future, my context in society, the well-being of those who depend on me. I have to look past my desire for official validation, and consider that getting an official autism spectrum diagnosis might actually dis-able me (in a social sense), rather than enabling me.
It might work in my favor with HR, if I check the “autism” box on my profile, but it might work against me when I’m dealing with others on a person-to-person basis.
It might work in my favor with service providers who could use a little more insight into why I am “insulting” them and realize I mean no harm. Or it could work against me by putting them on high alert around me… or they might even start treating me like the village idiot.
For that matter, what will it do to my chances of being adequately insured, later in life? Will I be turning myself into an insurance risk? Will I have a black mark put against my name in their rosters, flagged as a potential problem — a future mental illness patient… a future violent offender… an added strain on an already overtaxed and inefficient healthcare system? What will that do to my chances of being employed? Will I even be able to pick and choose the way I do now? Or will I be flagged by HR and hiring managers and recruiters as “one of those people”, and politely shown the door when their trepidation gets the best of them?
Anything could happen, really. And by my own admission, I give neurotypical people (and their institutions) a LOT more credit than they’ve earned. I expect that they’ll do the right thing, because it’s the right thing to do. I expect that they’ll be considerate and treat me with respect and welcome additional information about me as yet another facet of my character that will help them better relate to me.
I just have to laugh. How often do I need to be disappointed (and harmed) by neurotypical folks, before I get it? My expectations always outstrip their capacity, and I’m the one who suffers as a result.
An official diagnosis, while it might help ease some of the lingering doubts in my mind and give me a stronger basis for asking for assistance, should I need it in the future, is no silver bullet. And now that I think about it, it might get me in more trouble than I can currently imagine.
So, the proverbial jury in my head is out, yet again.
They’ve asked the proverbial judge their set of questions to get clarification, and they’re back in sequestration. Pondering. Weighing. Debating. And still not 100% sure of the verdict.