The dark side to diagnosis....

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Well, here I am at 36, wading through these rapids with few life rafts and little understanding.....

Whats new? The dx has made little difference and I am insightful enough to know that it would not make a dint immediately in my personal life. It certainly has made things easier between my psychologist and I in terms of direction and her wonderment at making such therapeutic mistakes along the way, which led to her severe discomfort at her error. I do not blame her in the slightest. At least she had the intelligence to question the past and make observations based on what she saw, not what she knew. That she asked the hard questions and dealt with the meltdown responses from me. That she took my frustration and confusion on the chin when trying to fruitlessly teach me "mindfulness"........a concept I still have to push myself through the eye of a needle to practice.

So, I use this dx to understand my process a bit better and work on changing some bad habits of the past, and healing from the grief of a life spent in isolation and emotional barrenness, of being misunderstood and manipulated......... to experience joy.

But I live with 2 other people. My son and my fiance. What does this mean for them? My fiance is afraid that due to my inauthentic life and consequent depression and breakdown, I will change somehow. That me trying all my life to mimic normality, it has somehow been a ruse. He is not accusing me of intentionally misleading him and he is certainly not surprised by the dx. Strangely no-one is, including my parents. But what is the point of a dx, if you do nothing with it, and problems exist? What if I do all this work to improve how I think and feel, only to become some hybrid of myself? To go through some mad metamorphosis? The idea is insane. I am still me, I just want to be a better, more joyful me.

I say to him "Read about it, get some skills to talk to me in a better way, so that we can both use a language we can understand. Help me with this work, for I am not alone. You are here, yet I am still deserted. I still exist as a singularity. Don't you understand that I will no longer stand in a crowded room and feel alone? That I would rather be solitary than exist in a lie?" I will not pretend anymore that I am enjoying this conversation about your friends new motorbike and discussing the suspension or some other two wheeled thing. I can do it for a short period of time and then it means nothing. I am sick of being interested in things I am not interested in so that I can follow the rules of social niceties. I want to think about something!! !!

Which leads me to this......my fiance said to me during a rare argument and a flash of unusual cruelty, "You cannot talk to people about quantum physics because you don't understand it yourself!! ! Stop offending the people who do not share your fixation. Get over it!! !" He was very hurt because I did not want to converse with people about what I consider to be stupid things. Maybe I am offensive. It wouldn't be the first time I have been called that. But that broke my heart. I love atoms. I love looking at atoms and learning the elements. I have a periodic table close to me. So I may not understand Quantum physics, but I am getting there and it is my deepest love. Maybe he feels threatened by my infidelity........that by the very nature of how I think and how I feel, I am being unfaithful to his humanity and others. That by the very nature of my misanthropy and total confusion with human interaction, I have committed the greatest of atrocities........a denial of my humankind.

I am not in denial, It is just too exhausting to pander to it anymore.......I don't have the cognitive stamina to constantly process all the time. That I like peace and quiet......so I can heal and fall in love with myself from the beginning. I am not speaking of conceit, I am speaking of unconditional love for self. That is my journey.......and he is deeply confused and afraid and.......I don't blame him

I have no answer, I just wanted to get this off my chest for fear of it suffocating me. Why do I feel I am standing on this great precipice, terrified of the darkness below?

Mics

Finding out I had AS changed me very little. Temporarily I felt a kind of giddy excitedness that perhaps now I held the philosopher's stone that would transmute my crap life into the golden one I crave. But no. Also, there was a fear of the unknown, and a temporary feeling of not knowing myself, feeling undone. It went away.

Uh, so don't worry, your life will probably remain disappointingly familiar. Ain't I a bag of laughs!

Oh, and the mindfulness really does help, if it's the same thing I call mindfulness.

For me it was helpful to figure out just what the heck is the matter with me. I have been working on my life in general, and now I have a better understanding of what I want to change, what might be changeable and how I might go about doing it.

The most immediate thing was a newfound understanding that my need for silence and solitude is genuine NEED and I no longer feel guilty for indulging it.

Little has changed in my life also. It is not like winning the Golden Ticket on Charlie and the Chocolate Factory. For me right now it is something that is in my medical records, and in my records at the income support agency. But my life is more or less the same.

That me trying all my life to mimic normality, it has somehow been a ruse.

Since getting a diagnosis and telling my partner - and giving him some idea of the effect of having AS - I've been left with the uneasy feeling that this is what he thinks and that he's uncomfortable with the idea that inside the person he apparently knows so well is a kind of alien who's only mimicking 'normal' human feelings and behaviour.

I really have no idea how to deal with it. Maybe others who have been successful can give some advice.

I understand everything you have posted and am in that same position regarding my home and family. Who is the real "Dave"? I have lived inside a carefully created construct personality all my life and recently it has cracked apart. I shall make more effort to assist my wife in understanding what is going on with me.

Incidentally..... Quantum Physics. That used to be my thing. Don't you just love "quarks"? And the idea that nothing exists... matter... energy... nothing exists except movement. Wow. I think I bored more than my fair share of people with that one.

When I was diagnosed, I hated it. It took me a while to accept my condition. I hated having it and I didn't start thinking about it till I was 14 and I didn't know what was AS and what wasn't. But I was happy before the diagnoses so why be upset about it now? I was the same person before the diagnoses. It doesn't change anything unless you let it. It's supposed to bring out more understanding and help you understand yourself better and what you need to work on. Nothing changed much after my diagnoses but my mom stopped getting mad at me about my obsessions and expecting more out of me. She thought I was being a brat when I thought she was telling me to stop that teasing. She did say "stop that teasing" and I would do another tease. This was before the diagnoses came along.

I think the label has changed me and I don't know what I would have been like if I were never diagnosed. I wouldn't have been aware of what I am missing and I don't know what kind of therapy I'd be getting from my shrink when I was 16-18. I don't know if he still would have pointed out I don't pick up on social cues and I don't read people. I might have still come across AS online because I was obsessed with mental disorders and I might have clicked on the name just to see what it is and maybe thought "That sounds like me" and shrug it off. I probably wouldn't have read lot about it. I don't know if I would even be here. But I don't think I would be self diagnosed because I would have been unsure and the fact I can hardly relate because they didn't have my life and every aspie is different.

Someone's blog entry (not my blog BTW), called "Who ARE you, anyway?" about the costs
of 'faking it' --

http://cometscorner-clay.blogspot.com/2 ... 5184417316


You also might want to check out the "burnout" and "aging" sections of this:

http://www.autistics.org/library/more-autistic.html

It's actually kind of amazing to me that burnout and 'faking it' (the cost of it) doesn't come up more often, but maybe that's because most dx'ed people are young.

Thanks everyone.......for bearing with me even though variations of this theme seem to come up constantly. And for good reason it seems.

Somehow the deepest fright comes from illumination, the illumination of all the atrocities I have committed against myself. I do not live in regret of performing bad habits, but the cost of it becomes more and more apparent as time and therapy goes on. As someone mentioned their soul, I grieve for mine. I spent so much time ignoring my soul, in order to function, that it became damaged, misplaced and terribly lonely. I feel like I am crying and hugging all the lost and ignored parts of me, and the fact that they are all parts of me, is the only reason they have not left in disgust and revulsion at my mutiny. That my soul, despite my crimes against it, still loves me unconditionally.

I have cried more in the last 2 months, since the dx, than I have in my whole life. Deep, shoulder shaking, racking sobs......that are reminiscent of a little girl trying to physically escape this prison I have locked her in this whole dastardly and inauthentic life. This sobbing frightens me to the core.......for I have never been able to cry. So imagine my terror when I found that at intervals through the day, I could not stop sobbing, so hard that it has physically brought me to my knees. And it is not necessarily the dx that has caused this, it is the understanding, the illumination and the grief of a life spent in robot mode that causes it. I have committed the greatest crime against humanity, and that is my own.

Burnout.......I keep coming back to something that happened at the end of 2007. I had been working for about 3 years in a job that I loved. I worked in the Pathology dept. of a major city hospital. It was stressful and busy, but the process was wonderful. It required all my accuracy, ethics, patient care, rules, procedures, and attention to detail. I loved the responsibility of making sure that sick people got the best out of me. That I did the right thing so that there were no diagnostic glitches along the testing line. That I treated the tissue, the blood, the parts of the body that I handled with the upmost respect and care. I was good at my job. The scientists liked me, the doctors liked me and I always gave the occasional patient that visited our dept. for specialists testing, a comfy chair and a magazine to wait. I understood their fear.

I was promoted to Training Supervisor. It was deemed that I would be a good teacher, and I was. But it was people that undid me. The daily grind of emotional response from staff in my immediate dept. Their bitching and moaning. Their inevitable airing of their personal lives and lack of commitment to the team. Their basic and fundamental misunderstanding that THIS was a workplace......not a bloody morning tea!! ! I became so angry over time that I was worried. I started to have mild "hallucinations" like putting my fist through these silly mean people, while I was talking to them, or biting them, or annihilating someone. I have a history of reactive violent behaviour, so you can imagine my deep fear at having these feelings surface. There were multiple reports of harassment and bullying from many staff members. Morale plummeted. People were sick a lot.......and I desperately tried to function, to contain the deep fear of the unpredictability and general meanness of these people. That they seemed to thrive on interpersonal conflict, while patients lay on beds in ICU, fighting for their lives. Perspective, people!

So, my point.......I lost my mind at the end of 2007 and ended up in my favourite psych unit for 3 weeks. I walked and walked and walked......with my trusty psych nurses around that hospital like my life depended on it and then depression most foul hit with nuclear ferocity. My consultant psych and my team in hospital disagreed with my GP that it was Bipolar. They said " You are suffering huge burnout." But they couldn't explain why. One of those familiar anomalies I have had all my life.

Due to my terrible fear, they put me on valium, anti-depressants(which made me worse, so I came off them) and them lithium. I was on 1000mg of lithium a day plus anti-psychotics to try and control this steam train of a mind. I could not work, I could not study, I could not read......I could not function. I spent 6 months after hospital in a total fugue. 2 years later with my shiny new shrinks observing me all this time, it has been declared it is AS and has been all along. I am off the drugs and healing my battered soul.

I am sorry for rambling on, and thank the ones who had the "concentration fortitude" to read this......it is good to get it out, for I still grieve about my job, and the wonderment I experienced as a result of it. If only I could have gotten rid of the people, and run the lab myself........

Mics

Sounds like you're doing some healing work. Just let it happen, eventually you'll feel better. I did the whole crying for a month thing a while back. You need to process that stuff, especially if you've been repressing. Don't worry about your soul, they are pretty elastic things.

OMG, that article was SO descriptive of me (the blog). "Those of us who have been able to "pass", have done so at a tremendous cost to the soul. Always pretending to be someone we're not, it's very easy to lose track of who we actually are."

I have often lost track of that. Too often. I "pass" quite well in a professional situation but my personal situation is a royal mess. Countless times I've wondered who I really am and has that been lost...and at the same time convinced that if I really got at that and was open about it, I would be rejected. I have spent TONS of energy in "acting normal" so that I could get where I wanted to go with my life, and I got there, and for my effort and hard work I get my husband telling me I'm "just lazy" and "don't try" and that when I say I can't do something it's just that I really don't want to. He doesn't believe me when I tell him I'm exhausted at the end of a 'normal' day.

I haven't been officially diagnosed, and I'm still deciding whether to go there. I don't think it will help, except to confirm what I already know, as my husband is only interested in me "changing". Apparently I have let too much of the "real me" through over the past 27 years and he's decided it's not good enough.

It sucks.

~Kate