A Devastating Life

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Hello. This is my first post. I find myself traumatized. I am an over 40 female with history of depression with severe insomnia since at least age 14/15. Major changes in my life and environment often set off spells of insomnia, anxiety, and sometimes depression in my teens and 20's. My history also includes a 6 week bout of mononuclosis at age 10 accompanied by sudden loss of vision in right eye for a day. Since eyesight resolved, no one ever knew what was wrong. At age 28, I experienced a neurological attack-numbness from the waist down and slight change in balance on left leg. During the first attack I consulted a neurologist and was given the standard line of denial--"At this point we don't call it Multiple Sclerosis. If you have another attack in the future, then more tests will be done and you may develop MS. I lived in anxiety and frustration over the next 7 years as I endured more attacks but could not get a diagnosis or treatment. Finally I was dx with MS in 2005. I realize, looking back, that the MS did not just begin at age 28. Rather, when I was 10 and had mono, the loss of eyesight was actually optic neuritis, an early warning sign that MS was starting.

As a young child (by age 8) I displayed certain tendencies. I was somewhat quiet. I took school extremely seriously. I was perfectionistic. For example, part of our assignment involved practicing forming letters in both print and cursive. I recall sitting at my desk laboring over my handwriting. I approached it as an art form. I wrote my letters deliberately. I had a concept in my mind of how I believed the letters should look. I would practice and if I did not like the way a letter turned out-if it was not neat enough or attractive enough, I would erase the word and start over. I believe this behavior was a manifestation of obsessive compulsive tendencies. At that age, I did not have elaborate meaningless rituals. However, my approach to schoolwork or any task involved that laser-sharp focus and ability to concentrate for hours. I have recently learned that this intense focus is one of the hallmarks of Asperger's syndrome. Later, at age 10 the episode of mono lasted 6 weeks during which I was homebound. If I wasn't sleeping, then I was doing my utmost to keep up with all my work at home. I had no help and no tutor. After I "recovered" from mono, I think that is when I began a checking ritual. I would lay in my bed at night and worry that the front door downstairs may have been unlocked. I would get up, go downstairs and check the lock. Then I'd go back upstairs and lay down. Then I would wonder if I had somehow missed something-like the chain. I would go downstairs to check the lock maybe up to 10 times before finally giving in to sleep. That behavior did not last very long. It makes me think that having contracted Epstein Barr virus/mono earlier that year may have triggered both the MS and the obsessive compulsive tendencies. Over the years, I channeled my OCD tendencies into learning and achievement. Most of the time, I achieved spectacular results-straight A's. I just had the knack for academics. However, as most perfectionists learn over time, bad things happen. You encounter major losses. Life may throw you overwhelming conditions and pain. Nothing in my youth could prepare me for letting go. My attitudes and way of learning and thought processes are too rigid and inflexible. So, this has led to me REJECTING MYSELF-my entire self. I can no longer find anything good about myself. Some people have a very tough time with just one major health condition. I have three major neurological conditions-likely with some overlap amongst them: Major Depression, Multiple Sclerosis, and Asperger's. I managed to successfully complete my BA at a top university. After that my life just took a downward spiral. It is far beyond disappointing. At this point I cannot take care of myself. Despite taking immunomodulatory treatment for MS, I still have attacks and symptoms. The attacks, for me, usually cause unimaginable hideous forms of nerve pain and I have residual damage.
Before I learned about Asperger's doctors had told me my depression could be treatment-resistant. Now I know what that was about. Over the years, from age 10 to about my 30's, not a single doctor or therapist ever suspected an autism spectrum disorder. Of course, at the age kids are being diagnosed and helped today, I was suffering symptoms of Asperger's but no one in America even knew such a condition existed. The research did not arrive in the US until the mid or late 80's. I went under the radar. No diagnosis. No intervention. High school was pretty nightmarish. I managed to get through it mostly alone. I found a boyfriend, outside of school, with whom I spent a lot of free time for two years. I was ALWAYS anxious and hypervigilant around large groups of people. Antidepressants did not prevent that chronic underlying tension. I realize I have suffered with that most of my life. Now I see how that social anxiety and other aspects of Asperger's have contributed to ruining my life. I have never really risen to the level of functioning I enjoyed during college. For many reasons, I find myself currently in a deep depressed state. I don't care about the outside world. I don't really want to be around anybody. I feel like my apartment is a cave and my life is meaningless. Part of me feels guilty and horrible that I have always been so focused on school and hobbies and obsessed with achievement. It's as if I missed the whole point that other people live for--bonding and social connection, friendship and love. Yes, I have had friends but over the years they disappeared. But there is a wall separating me from other human beings. There are too many things about me I don't want other people to see. Maybe some people with Asperger's are content to master computers and have a job working on a computer all day. Maybe others are content to work from home. Maybe others don't feel the unnatural unbearable pain of being all alone and isolated because they don't have the level of awareness that it is even a problem. All I know is after reading Temple Grandin's book "Thinking in Pictures" I was concerned that so many of her experiences were familiar to me-not everything, but there were some commonalities I shared with her which unsettled me. Then a few years later, I read "Look Me in the Eye" and that was the clincher. So many of John Robison's experiences and thoughts and behaviors matched my own and I just knew. I am completely traumatized. Just knowing I was struggling against a kind of fog and fatigue and the depression and anxiety...and my parents, as well meaning and intelligent as they were, did not see what was happening--at least not until it all really blew up in a major depressive episode at age 16, the first time I became suicidal.
I know this is a lot to take in. I thought I'd try to express myself on these matters. My psychiatrist does not do counselling-she just writes prescriptions. I have attended support groups for depression and for Multiple Sclerosis in the past. I don't know if there would be any point to finding a support group for adults with Aspergers. The groups get old after a while. O.K. I'll wrap up for now. Will check back for any feedback. Best of wishes to you all. Thank you for your time.

I was born legally blind (ocular albinism) and had weird, over-protective and somewhat abusive parents. With all that, although every one of my teachers had concerns about my inability to "get along with others" and various other issues, no one figured out there was something "wrong" with me. It helped that I was a hyperlexic "genius" who was reading Readers Digest by the time I went into first grade. And this was in the 1960s, when not that many people had heard of autism. (The first time I heard of it was the character of Tommy on Saint Elsewhere.)

Over the years, as I read a few books with autistic characters (Dean Koontz wrote at least one, although I can't remember the title, and The Speed of Dark, by Elizabeth Moon, come to mind) I felt an odd affinity for those characters, but assumed it was just the fact I was weird. The first living being I recognised as a fellow being was my cat, for example, and I used to annoy my parents by pointing out she was born into a world she hadn't made and had no way of understanding. At the time, I didn't guess the reason I could understand this at such an early age. I was always drawn to the outcasts, stories of Jews in World War Two, for example.

Then, in 2006, I found myself actively tracking down information about Aspergers and autism online for someone else. As I read it, I had this odd feeling much of it was describing me - but I also knew of the tendency of anyone learning about a new "disease" (I know autism is not a "disease" - I don't consider it one - but that's the word commonly used when describing this tendency) to imagine they show symptoms of it. So I shoved that idea aside, quite successfully. Fast forward to the late summer of 2010, when several incidents forced me to recall that suspicion, and to actually examine it carefully. I don't have a formal diagnosis, but I've spent enough time learning about autism - and seen enough of my quirks that never made sense explained - that I wouldn't believe an "expert" who told me I didn't have it unless they could provide an explanation of all my oddities that actually fit me better. And I wouldn't bet a corroded penny against a million bucks they could pull that off, either.

So although our experiences aren't nearly identical, I have some idea what you're going through. I've never been quite as alone as you are - or as successful, given some of my traits, and the fact I was fighting what I call an "invisible net" I had no idea was holding me back - but I've dealt with my feelings of alienation by writing, by attempting to express myself and my thoughts in stories and poetry. A blank sheet of paper always accepts what you say and it is also an effort to reach out to anyone who might understand at least a tiny part of me.

I haven't tried joining any support groups, so I can't say how that might work out for you - and your mileage might vary, anyway. But I will warn you, this discovery is pretty likely to touch off an avalanche of new understandings and insights, some healing and some very painful. Over two years later, I'm still figuring things out from my past. I'm not sure I have any more general advice, but if you have any specific questions, feel free to ask them. I'll "watch" this thread so I won't miss them.

Thank you for sharing your response. I do not have home Internet access, but I will try to check in here at least weekly on my laptop at hifi spots or at the library. It is astounding how many people are "out there" in the world who are dealing with Asperger's. Perhaps we will chat again and learn more from each other. Take care theWanderer.

I've been giving a little thought to your question, and although I can't claim personal experience, it does seem there's a chance an Asperger's support group might give you some help. And, if it doesn't, you haven't lost more than a small amount of time. I'm not sure if GRASP has a branch near you, but you could try contacting them to see if they have any recommendations for your area if they don't. (I recommend GRASP since I've read the book by Michael John Carley, Aspergers From the Inside Out, and found it useful. If you don't want to buy a copy, I'd suggest seeing if your library can get you one on ILL.)

http://grasp.org

Welcome to WP, Calaspgal. I hope you find here a group or individuals with which to share, find companionship and commiserate.
- a person who cares

A sweet welkome to WPea.



Mick and Peahawk