An autistic Bohemian samurai introduction.

How do you know who you are?

Hi. 

My name is Erik, and i was diagnosed at 30 year's old with autism spectrum disorder.  Throughout my entire life up to now, i have felt, hopelessly out of place.  A man outside of time.  In the world, but not OF the world. All of my experiences have echoed with the emphasis that i do not belong here.   From the start, i was an outcast, felt strange, had unusual interests and unusual talents. And they knew it.   To get information like this, proof of a feeling that has lingered just under the surface of my consciousness for all these years, i didn't just pursue a capable doctor for 9 months (yes it took 9 months to find a doctor and means to afford seeing one) but i threw myself wholeheartedly into the process of researching.  I, like i'm sure some other's on the spectrum, favor facts over fictions.  A lifetime of trying to parse information the way that neuro-typicals seem to had taught me to be suspicious of the answers they would give me, and that ultimately if i wanted true, satisfying answers that considered all the facts and data, i would have to seek them out myself.  

Humans are terribly poor simulators of experience and information, as has been said by research scientists,  and the data bears that early assumption i had out.  Part of the surrealism of my experience has been just that, uncovering absolutes.  While i researched autism in all it's various permutations, i already had a wellspring of knowledge to draw from about human nature.  

You see, being different, and different in a way that gave me specialized narrow intelligence, lead me to understand a lot of things organically before they were explained to me or "Known" to me by ways of more conventional education.  Before i read so many things in books, before years passed and social sciences allowed for diverse and creative research to puts numbers and facts behind my theories and hypothesis's, i knew.  The surreality has been in living on, and discovering, over and over, that the things i suspected about myself, about others, about the world, about our interactions, were all true.  Each time the science caught up to my intuitive understanding, i felt slightly better about myself, it assuaged a bit of my fear that all those others had built in me, to think i was crazy, or just wrong in existing at all. 

Finding a doctor when your poor was the first hurdle. As a result of my status, i've had extreme trouble finding employment of any kind, or maintaining it.  I am a 6 year college graduate with 3 AS. degrees, but after years of failure in trying to find work in my field of study,  (for what are now OBVIOUS REASONS) i was just trying to get any job. Mediocre retail work was to follow, but only a few jobs over 10 years.  It would take me 10 times the amount of time, applications, interviews, to get the same amount of job offers of other people i knew, the primary reason i surmised was the interviews. The resume looked good on paper, and i would get interview offers fairly consistently, but i would never get a call back again after that.   On the rare occasions that i DID get a job, the pay was almost always minimum wage (even thought i consider myself pretty highly educated) and the work was far below my capabilities.  All of these jobs required a high degree of social dexterity. Not only in interfacing with random customers and having to "pitch" to them all (which i could not do, as i have great trouble in lying) but even more so in the regular relationships required of your coworkers.  Herein lies the true challenge.  These jobs all followed a similar pattern that was unavoidable even after knowing what would happen.    Initially, spirits are high, people are relatively positive, a lot of slack is allowed as you are in the learning phase of your job.  You are as a result, given a wider berth to navigate and find your footing.  By the end of the first month, i'd have already irritated most of the staff, or a select few, often due to my unusually uneven performance.  Often i out-performed long time veterans of the job in a very short span of time, mechanically speaking, but in terms of human interactions, i was consistently lousy.  This is around the time i would get my first "Talking To" From the boss or a supervisor, about how i needed to improve my interactions with customers and coworkers.  I would begin to be more and more anxious from this point going forward, starting to have trouble maintaining the facade of normality that i had been trying desperately to maintain up until that point.  Now it was getting exponentially harder. Sounds and smells were starting to bother me now.  I felt intensely depressed and fearful while trying to maintain my performance and would start to isolate myself more and more.  This inevitably heightens awareness of my "Otherness" and now coworkers are beginning to openly display animosity as well as snipe at me behind my back.  I get another talking to from the boss. I explain that i was told as a child if you don't have anything good to say, don't say anything at all, so i had stopped verbalizing with my coworkers entirely. In one instance my boss,  looked at me blankly and said "You can't do that."   I asked why, and she simply repeated herself,. "You just can't."  By now, the employees had banded together in disliking me in a unilateral way,  and began to deliberately make it harder for me to do my job.  Trying to make me specifically do the parts of the job i was worst at or expressed the most apprehension about doing skillfully.  It's at this point to 3 month mark- i have to quit or i am fired.  

During this entire ordeal, i am a rattling mess of a person.  Amped up and anxious, stimming and experiencing racing mind, and inconsolably depressed. At once i hate myself for not being able to do as they do, not being able to work a simple job and perform, and then again for this being the only option i had, to pretend i was normal, just to try to make a pittance to survive on.  An unhappy life. 

Living in a state where medicaid is only granted to women and children, which was my only means to get insurance as i could not pay for it without a job, i was in dire straights. I was already surviving on someone elses back, and figured i would try to see if I qualified for disability to help pay for my upkeep.  Now i had been researching autism for months at this point, and had already called over 50 doctors to try to even find a person QUALIFIED to diagnose an adult, let alone one that i could afford.  Over and over again i was met by dead ends and brick walls. 

"We only treat children."

"I'm sorry this is a pediatric autism program."

"There are no tests that are currently usable on someone of your age for accessment."

and of course, The catch-22.

Now i need the diagnosis to get the disability but can't AFFORD to get diagnosis without insurance OR the money i would get from disability.....

I found a research study that might help, but the cut off was 27.  I used online resources to contact people at Grasp and other major online autism advocacy websites, the emails i got were less then helpful.  Mostly generic information that i had already found myself, no direct support or assistance in spite of all my pleas.  Months just kept going by, me rotting in this apartment, being paid for entirely by someone else, and so depressed and miserable i couldn't muster any gratitude. I couldn't say "Thank you for paying for me." Because i just feel like a complete and total fuck up.  I just wanted to die. I already un-exist, and i had been trying so hard my entire life to make sense of this, or to get help, and no one has helped me.  It made her angry at me on top of everything else, and i probably deserved that anger. This has gone on too long, and under my best efforts i was still getting no one nearer to understanding or getting the answer or to any manner of self sufficiency.  I ended up over the months i struggled to find a doc accumulating a few local contacts, all women, that would maintain email corrspondence with me as i attempted to track down a solution.  One was a woman who worked at the local pediatric hospital, she had an autistic child. The other was a woman who ws a researcher for another hospital in in the area, same story. The last woman was the head co-ordinator of the state run autism program, and had 2 autistic children.  Over months of accumulation and introducing these women to each other via emails, i had lots more suggestions, but none were panning out. We started to find a few possible doctors but the money problem kept coming up.   The co-ordinator had an idea.  Apply for disability insurance. They will provide a free evaluation to determine in your eligible, it might be a way in. 

I had an odd, claustrophobic experience in a tiny office some weeks later where an "Evaluator" asked me a series of rapid fire questions for 20 minutes while typing furiously.  I came out of it feeling confused, and not at all hopeful. I know based on my age, presentation, history, and all the best practices guidelines to diagnose me would require great expense, differential diagnosis, tests, and interviews with family members, etc.. This felt like nothing of the sort. 

Inexplicably, some months later, i was approved for disability medical insurance.  To this day i don't know why.  They did not list that on the letter i received. Just that i qualify, and that was that. That brought up even MORE questions then answers and i tend to perseverate but eventually i just accepted it.  (*Shakes head*-it will always bug me.)  but NOW i had insurance, and i DID find not one but TWO doctors who were qualified. They had history that i researched that verified 20 plus year experience working in the field,  and had history of adult patients with ASD.   

I got my diagnosis, and with it the proof i had known was the truth all along.  If i had that sheet of paper as a child, i might not have been abused, beaten, neglected, ignored by the education system, and had a constant stream of vile things said to me about myself from the 1st grade onward, but those stories are for next time, for another day.   I was who I SAID I WAS, not who THEY SAID I WAS, and now i had the damn proof. A thousand voices telling you who you are would make even the most confident person doubt themselves. So an entire world full of faces telling me i was wrong, eroded my belief in myself until i no longer had any idea who i was. Was i who i thought i was? Honest, smart, curious, and kind hearted, or was i who they perceived me to be? Angry, stupid, mean, defiant, unruly, overly-sensitive..

I could now know with externally verified certainty that i was right, i had been doomed from the start.

That is my introduction to you internet. To everyone.  I'm 31 now, with all the baggage and weight and damage and trauma that comes with that much life, but i'm also a new born boy, wondering now with forehead wrinkles and a few strands of white hair, where do i go from here?