ASPERGERS, THE LABEL MACHINE, AND LIFE IN THE MODERN WORLD
As the Witch of the West has said, “What a world! What a world!” (and “I’m melting!” … what a relief that might be for us, at times!) To label or not to label (ourselves). What are we to do when we do not quite fit the expectations and requirements of the world? What is one to do? A friend’s suggestions give me pause to think about myself and such questions. How are you doing trying to cope and fit? It is tempting to “stop the world” and get off the merry go round. Should we? Entirely? Partially? Shall we keep trying to make our own little merry go round? Can we? It seems to get harder in some ways as we get older and more tired, or when the world yanks the rug out from under us. Here are some thoughts from Merton who is still trying to make his life fit him as best he can, without completely opting out.
A friend wrote suggesting that he thinks perhaps I have Aspergers. We are close and I value his opinion. He knows me well, intimately, from literally thousands of letters between us. Below this intro is my reply.
It is interesting, contemplating what diagnosis we might have, and people and professionals might have all sorts of opinions. And, diagnosis can help or hinder us with our lives. It depends on how we, how others, how the world, and how the hands of fate handle such a thing as a diagnosis. I am wary of diagnosis, though, and would (I think) rather just stick with being a human being and trying to make a life that fits me.
I have been struggling a lot lately, trying (out of necessity) to recreate myself, once again. There has been no choice, since I rather lost everything in my life about a year and a half ago. I had to jump in the water and swim upstream against the current to a destination that I could only dimly see, rather against my will. But things are smoothing out, getting all worked out, and becoming clearer.
At times like this, we can be very emotional, almost drown, and it is tempting to give up, say we cannot handle it all, turn ourselves over to "professionals" and let them label us (and try to "make it all better"). I did the therapist, psychiatrist, pills thing years ago, whilst trying to stay in the world. It was nine to five, carwash and cleaners on Fridays after work, chores all weekend, etc. It was soul killing.
I made and spent lots of money, racked up lots of debt, was a good debt/money slave for a long time when I was young. Then I gradually took myself out of the world, answering the Muse’s call, pulling further and further away from the world, turning inward and towards creativity, over several decades. I found an art hermit life that fit me and finally all was, pretty much, well.
Then God, the Universe, Fate (whatever one might call it) sort of pulled the rug out from under me about a year and a half ago, taking my entire world away from me: partner, doggie, home, work, etc. And so now I am immersed in the world again, with the money wolf yapping at the door, as he does for so many of us. I am struggling to make a life that fits me and also makes enough money to keep food on the table, a roof over my head. I have a new partner, a busy life of teaching and performing music, a new role as a step parent of sorts, and there are lots of pills and shots for my various middle age physical ailments to pay for and pump into me.
It is a tightrope dance. I will not even go into the incredible dance that the new health insurance system requires. I know you all know about that. I continue to try to make my life and schedule fit me, and avoid therapists, psychiatrist, antidepressants, sleeping pills… all the things which so many need to function in this ridiculous, stressful, misery making world (which still is at times sweet and good, despite big pharma, a crooked, greed based world system, etc.).
It has been hard, but things are working out. Here is a series of letters to my friend who suggests I check myself “in,” get a diagnosis, join the ranks of so many on disability today, and carry on with my art hermit life. While it is tempting (and who doesn’t feel like doing that at times, since modern life is so incredibly stressful and almost impossible to keep up with!), I think this is not for me. Despite my troubles with nerves, anxiety, etc., I do not think that is what I want. Here is my response to my friend, with several letters strung together to make one long-ish and complete one.
No, I have not been diagnosed with Aspergers. I took several online tests and scored as a "normal" person, but on one, I scored just below the line for Aspergers. Interesting. B looked at the qualities of Aspergers adults online and he likes to tease me and say I have it (it is sort of a joke between us, though I know it is not a joking matter, of course). I do see myself when I watch documentaries about Aspergers or read about it, but I think I function in the world or "pass" as “normal” (whatever that is).
There are definitely some of the traits that I have in common with Aspergers adults. However, I think labels are over-rated at times. Again, I would say, as always, it is important to try as much as possible to make our life and our little world fit us, and then all of us function better and are happier.
A lot of the symptoms of this syndrome, if I understand things correctly, are also symptoms of people in stress, of other diagnosis such as borderline personality disorder, etc. I do not think that I am interested in being diagnosed. It is just somebody’s categorization, anyway, trained or not. I think I function well enough in the world. I just need to not be quite as immersed in the world as the average person, need consistency, calm, rest, and to live a bit on the outskirts of the world, such as the life of a self employed artist, teacher, etc. I just have to figure out how to do that with my new situation and partner.
I do think things are going better with my new life and work partner, B, with the performing and teaching, with my grief process over losing D, M, and my art hermit life. I think that B and I will pull through. We fuss, but I think gradually we are starting to understand each other, how to relate to each other, what our life and routine needs to be. I keep adjusting our schedule, and working out little details. It has just been so surprising to me how many details and things there have been to work out, spiritually, emotionally, money-wise and schedule-wise... and all the little details about living in our present system/society.
I do not think that the psych ward and a diagnosis is for me! I believe I understand that is your suggestion: to enter, let them diagnose me, work out all the kinks, and start the disability process. Admittedly, I have been very frayed emotionally lately, had some outbursts, big crying spells, etc., but who would not having lost everything, having started all over in all respects of one’s life, all at once? I will never enter a ward. I would not be willing to let go of that much control of my life. I would rather end things that do that. I am not judging anyone who does that at all. I just know that I am not willing to do that... and I have already tried pills, therapists, psychiatrists, etc., in the past. These things have their place and in some ways helped me as a young man. But basically, I have decided to try to make my world fit me, rather than utilize them to try to make me fit the world.
I have had trouble with making a new world that fits me since I lost everything (or so it seemed), but I think that ultimately I will figure it out. At present, lots of things have been worked out and I am kind of accepting the swimming along in the current of the world and all that it requires of me. I am swimming along, more things have been worked out, and I feel that B and I are working things out, too. It sure would help if there was more money, but we are working things out.
As for the Aspergers question specifically, let me say firstly that I have greatly enjoyed both my friends here on DA and various students I've taught who have this diagnosis. When I watch documentaries about Aspergers, I see certain things I recognize in myself. But I also know that I function in the world. I can hold jobs, adjust in my dealings with others, sense their feelings and respond to that with ease, give lectures, give live programs which require me to easily and adeptly sense and react to the feelings of others, avoid and smooth out conflict, control my emotions and responses... etc, etc., etc.
I do not think that someone with Aspergers (I may be mistaken in this, please do not shoot me, readers, if I am wrong) could have been a yearbook editor, president of their college choir, section leader in band and choir, a teacher in public school, a private music teacher, a director of education at a theater, write/produce/promote original materials, direct plays, etc. I think I have trouble with my nerves, with depression and anxiety, etc., and that this has gotten harder in some ways and easier in others as I have aged. I think I got a bit agoraphobic when I was an art hermit. Aspergers symptoms have much in common with nerves, emotional l trouble, etc. I am able to function well in the world, IF I am not immersed in it too much in any given day.
As I have gotten older, I seem to need more separation between me and the world. I can do a couple of programs each day and enter facilities and function well with residents and staff. It helps having B along. We help each other. Many people are not meant to be in the world, right in its heart/face eight to twelve house a day. I am not.
I can enter the world briefly a couple times a day and function well. I do not care what the world might want to diagnose me as. I am not really interested in that. I have been given certain talents and abilities, and use them as best I can.
As long as I can work out the finances (and I will continue to try to), then I think it is best for me not to be labeled and diagnosed. I think if I am any sort of diagnosis, then I am probably as one Aspergers test said, in the normal range, but sort of near what might be termed as Aspergers (at least using one test, one way of looking at it). I must remember, too, that several other tests put me squarely in the normal range, and that these are only online tests anyway. I pass and I function in the world, and so, I see no need to dive into a world of diagnosis, disability, etc. I prefer, if I can, to just continue on as a human being, doing the best I can.
The world needs to stop demanding that everyone work and live the same way, and stop expecting everyone to make the same amount of money (and if they cannot, they are sick, not functional, etc.). This is wrong. This is the world’s problem, not mine. And, it just exacerbates anyone's struggles, who is sensitive, a little different, etc.
For now, I just want to be Merton. Let's see if I can do that, make things work, make a life that fits me, make it financially, etc.