Self Discovery Through Self Diagnosis
By Laura Nagle
I was rapidly approaching my fifty third birthday, and watching House, M.D. alone in my garden shed of a house. I have spent most of my life wondering what I am, and what is wrong with me and my life. I am possessed of a terrifying intellect, and yet make unerringly poor life decisions. I am simple and honest and always on time, and always competent, yet I am so hard to hire and so easily fired and receive neither raises nor promotions. I can scope out physics just fine and do so absent mindedly whilst pushing one more "Laura Car" - someone's used up jalopy, down the road one costly mile after another. And I am alone in a house literally the size of a garden shed, poor as dirt, and watching my favorite show.
I like House, M. D. Gregory House is an interesting character. Patterned after Sherlock Holmes; House is possessed of a terrifying intellect, keen powers of observation, and has no life whatsoever beyond his job. He goes home to 221B and has one alone night after another. He is unhappy pretty much of the time. His life is a wreck. He is rigid of both thought and behavior, and nearly entirely lacking in social ability. He seems to stay isolated to avoid the effort and pain of social interaction, even though it is obvious that he would like to interact with others, he is lonely. Sort of like the me sitting there in front of the tube, watching his antics. I like Gregory House; I would not mind meeting him.
For those not as addicted to House, M. D. As House is to Vicodin, let me tell just a tad about the show and its usual pattern. The first few minutes, before the opening, is the setup. Someone develops an unusual and sudden medical problem. Soon Gregory House and his team inherit the patient and the problem. The illness is intractable, each diagnosis is in turn found to be incorrect. At some point an incorrect treatment nearly kills the patient; a few times the word "nearly" fails to apply! All the time this front story is playing, we see via interactions between various characters, the long term development of these characters. The show is truly a soap opera, and we experience voyeuristic thrills as we watch the usual cast. Near the end of an episode, something occurs within this back story that would seem to be unrelated to the poor dying patient; but wait, there is that inscrutable look of House' face! He has it: The correct diagnosis, and usually a happy patient (Unless this is an episode wherein the patient dies.).
This night the episode was entitled Lines in the Sand. The patient was a boy with an (of course) intractable medical problem. The boy's plight was made all the worse due to his being non verbal, the boy was autistic. The episode placed Gregory House into juxtaposition with the boy. Several of House' characteristics were highlighted. House is alone, House does not communicate well, House does not play well with others, House is inflexible, and it was not that he did not want to go back into his office after a carpet change - he could not go back. Asperger's Syndrome was mentioned in conjunction with House, before the same Dr. Wilson tells House "You don't really have Asperger's Syndrome, you're just a jerk."
Now, let me add that I do not think that Gregory House is an Aspie! House is a fictional character. He is built to be a medical version of Sherlock Holmes. He has a set of personal characteristics that make him an interesting fictional person. Interesting fictional people break interesting fictional legs. Still, this episode set me upon a quest. . .
Like many, I had no idea of the nature of autism. I had in my mind a piece of the myth. That myth may have some basis in truth but certainly is not the entirety of autism. I find that in describing myself that I must check nearly each and every box on the list, still I fail to meet the stereotype! The inaccurate and limited description available to me had precluded my understanding. I had no idea, none at all, that I might be living on the spectrum.
Whoa! Each specific similarity between House and the boy was a House characteristic that I liked specifically because that characteristic was mine as well. "Hmmm," I think, "I must Google this Asperger thingy." And so I did. Over the next several months I looked up the DSM IV description many times. I went time and time again to sites with scholarly descriptions of autism in general and of Asperger's Syndrome. I took the Simon Baron - Cohen and the RDOS quizzes several times. Then I found sites such as Alex Plank's Wrong Planet - did that site name speak loudly to me! On interactive sites I skulked about for a while reading posts by others, and then finally I registered and began posting. I bared my soul to the citizens there wondering what they might say about my perhaps, sort of, maybe being an Aspie. I was not an easy sell.
Still, during those months of dare I say obsessive study of matters autistic, I saw ever more my own self staring back at me from the abyss. Whether I looked at major issues such as our general inability to read correctly the nuanced output of most people or some small strange and seeming unrelated issue like toe walking; there I was. Whether my learning to tie my own shows at an impossibly late age, or my inability to chord musical instruments, or my obvious lysdexia (yeah, I know), or flapping and spinning; there I was. I made a mental checklist and found that whoever had placed the order for my manufacture had checked nearly every option box within the autism special orders group package (General Motors: Z13). How had all this been missed? Finally I spoke with my sister; informing her that I had come to believe that I had Asperger's syndrome.
After a few talks over a period of a few weeks she confided in me that something related had happened to me whilst I was in fourth grade. Now, I did recall the visits to the school system child psychologist. I had memories, generally warm ones about the child psychologist. I recalled his dimly lit office and the wonderful Abba Zabba bars he would give me there. I had no recollection whatsoever of why I was sent to see him. My sister remembered that which I had not (I think I have had a fifty year out of body experience!). It turns out that I had been diagnosed as autistic, and that I came within a hair's breadth of being confined to the wrong side of a locked door. I had gotten it right, and consider myself a self diagnosed Aspie: I did not know of that diagnosis; that is my story and I am sticking with it.
So what good might be an Aspergerian diagnosis whether self or official if made at such an advanced age? Surely I am not, in my mid fifties, going to request an IEP! Of what worldly good is this information to me? Let me tell you. . .
. . . Let us go back to that second sentence: "I have spent most of my life wondering what I am, and what is wrong with me and my life." Yes I have. You see, I am not blind. I have seen other people around me attain college degrees, buy houses and new cars, build families, take vacations, earn retirements. . . I have done none of that. I can watch an educational program on distant gamma ray sources and arrive at the correct conclusions about them as did science, taking as many minutes as it took them years; then I sleep alone on a worn futon in a house eight by fifteen feet in a friend's yard because I cannot afford the space rent in an RV park. Yeh, sumpin' is wrong here (See, I need not always be pedantic!). I have wondered about me and the life I live and long ago concluded that I am the most %$#@=+ person to have ever walked the Earth.
Now that I know who I am, in concept - not by word alone, I can understand me and my life. There is a system to this: the system that results from being autistic in a decidedly neurotypical world. I am indeed a mismatch for the society, but with a conceptual reason, there is a systemic principle at work here, and just as says the myth about autism: I do like systems, and things subject to systemization. That there is a system means that my life, although not pleasant, is systemized. I feel better already, having found the central organizing principle. My life seems to follow a formula as rigid and as self consistent as an episode of House.
Further, knowing who and what I am allows me to think better about my specific differences. Sure, I still cannot look another in the eyes; I do not confront people well, even to the point of billing clients for less than my service is worth. I still have meltdowns. I have a limited amount of personal energy with which to face the world. I spend evenings alone with book and my lifelong obsession: Radio. I have so little energy remaining by evening that I am a horrible housekeeper. I study probably too much. I am naught but what I am, but that is okay, being me is legitimate. Just like Popeye; I yam what I yam, and that's all what I yam. And just like for Popeye, that being what I yam is okay. I am not a defective anyone else, but rather a rather decently operating autie of my generation. The central organizing principle explains me quite well.
That is to say that even if there is small way to change who I am, I can perhaps learn to live with myself without self loathing and hatred. Even if I cannot go back fifty years and re live my past with knowledge of who I am, I can make sense of my decisions and actions. In understanding there is some measure of self forgiveness. Even if there is but small ways to change who I am, I can now make some alterations in my actions, and these will make the remainder of my life better. There was no way to properly adjust for self until I understood that self.
I can at this point even demand some adjustment in the world around me. I can indeed go to PDA (Public display of Autism) mode once in a while - at least among trusted friends. I need not entirely hide myself from the whole world behind a costly and ill fitting NT mask. Therefore I can, now armed with knowledge of self, adjust both me and my immediate environment. I wish I could have started this much earlier in my life. I would have wasted far less time and effort; I would have experienced far less pain.
In my mid fifties I am finally upon the road to understanding not only externalities such as maths and physics and structures (Oh my!), but even myself. I am finally walking that path of adventure and self discovery that some people found themselves treading during their twenties. Let me add that it is far better to be late than never.
And then the best thing happened. It turns out that after this misbegotten half century that I have learned. I have learned a lot about being autistic in a world not mine. Certainly most of my lessons have been negative ones, but that is alright too, one can learn a lot at the Universitatum Hardus Knockus. I have learned a great deal there, and can (How I can communicate well these things I do not know: see "Jon von Neuman's Catastrophe of the Infinite Regress.), but I can communicate some autistic issues to people outside my tribe. I have been useful in the construction of a bridge between us and everyone else. I am taking part in the building of autistic culture. I am of use!
That is more important that I can begin to explain. I have been one of the roughly nine percent of high functioning auties who are mostly self sufficient. Yeah me I suppose. But until now I have paid my bills and that is all. I have never been simply useful. I am now, and the feeling I get from a well received presentation is beyond my ability to communicate. I have the wonderful feeling that we spectrumites are on the launch pad and ready for a brighter future than anyone can predict. So I am not aboard the spacecraft, I am happily part of the launch team! Those who follow will profit from the experiences of those so old as I.
All this, because I finally found the answer. With that answer my basal self is unchanged, but everything else has changed and for the better. All this because one television show prompted me to investigate a human condition that defines me. It is never too late to find out who you are; it is never too late for an autism diagnosis.
All photos and content © LauraNagle.net 2011. Contact Laura at Laura@LauraNagle.net
I am now in my mid fifties. Although I was diagnosed as autistic while still in elementary school, I had no memory of this. Until I self diagnosed with Asperger's syndrome several years ago, my life has been a blind exploration of autism. I firmly believe that I might have been able to accomplish more with my time had I been aware of my deepest self and been able to develop a life to fit. However, not all has been bad. I own a small architectural business in Williams, AZ. I am self sufficient-at a low level perhaps-but still living without assistance. My goal is to use my life's experience to assist others on the spectrum to live better lives, and to be part of the founding of autistic culture.