Facing My Asperger's
By A.J. Mahari
I was told that I had Asperger's Syndrome almost four years ago now. I took a respite holiday commonly known as denial from this reality for most of that time, until last week, Friday October 12, 2001.
I don't know why.
I could not deal with this reality until I once again exposed myself to group therapy and then in this process I received feedback but also became aware in a much more insightful way of my own patterns and what they meant especially when compared back to being told I have Asperger's Syndrome.
I have had a lot of others things that I had to heal before I was ever going to be able to face and deal with Asperger's. It sat, undetected under everything else that I had to heal from first. So, now here I am. It was only one week ago that I hit this brick wall called insight (with feedback from group therapy members) and it was strong enough and painful enough for me to look beyond my shame and embarrassment and to end my denial. It is very tough to hear how intelligent/bright/genius etc you are and then to have to admit to not being able to do/get/ or understand things that my intelligence level alone usually indicates to others that I would get. However, there IS freedom and relief in finally admitting this to myself and to others. The real trick now will be to find a way to be myself without totally alienating others who try to relate inter-personally with me and visa versa.
After a week of seemingly constantly surmounting grief, (tons of tears shed) and deep heartache which picked up where it left off when I was told of this diagnosis, there is finally room to breathe and to feel like I'm still a good person and that I will be okay. I do not have to be sentenced to a life of isolation or alienation. I have choices to make and many new ways of coping to learn.
I feel the shame melting away. What a gracious gift this is! I have always been a believer that if we face what hurts us most or what seems to have us stuck or lost most we can re-claim our power. In the case of Asperger's I'm sure I can partially find a way to do this though I fully-well understand that "cure" is not a possibility. But hey, there's the beauty of the challenge. Where we cannot fully change or eliminate something we are pushed harder to learn to cope in new and different ways and to compensate.
Coming back to this reality has meant finding a home within myself while simultaneously grieving and finding comfort. I can already see the up-hill climb that educating professionals (those I'm currently dealing with) and others will be a sizable task. I am who I am. I am now in the very early stages of forgiving myself for so much that I thought was my fault. I thought it was all my fault because I thought so much of my difference was based in my emotional inability to relate which then left me feeling less than and defective. I am now letting go of SO much shame. Shame that I held and carried based on believing that I was supposed to be able to be "normal" or like everyone else. This is now so silly to me. Now I understand the neurological reality to a lot of why I am the way I am. This is freeing, no matter how trapped I may still feel, it is freeing.
I always knew that I was walking to the beat of a very different drummer. I just didn't know why. In not knowing and understanding why I was left to feel inadequate. I have lived 40 years of my life with this and never known, just never known. I have so resented the way that my parents and then extended family and finally society have continued to tell me over and over again that I need to change. NO I DON'T!!! Just as society (except for being more educated about things like Asperger's doesn't need to change either.) What kind of a world would this be if we were all the same? I am experiencing a new-found sense of joy at the differences that I own. Sometimes they really can and do hurt. No doubt about that. But, I do have a lot of hope that the more people that can be educated about the fact that there are many people (like those of us on the autistic spectrum) that don't process information or view the world that way that the "masses" seem to. If we can listen to each other with respect for our differences we can make our differences add to the world, to the society and communities that we live in rather than have those differences be cause for further separation and damage.
What intrigues me to no end is how I prefer to be inside myself more often than not just as most others (not on the autistic spectrum) seem to experience it as normal to be out of oneself and connecting with others so often. I can't imagine this really. I watch it, I can identify it but I'll be damned if I can get it. I can be there sometimes but it doesn't take much for me to go into sensory overload and to need to pull back inside.
I'm learning that what I lack is a volume control. So where as others may turn the volume up or down around others and in the process of socializing I can only choose between my on or off switches. Choosing my off-switch to take care of myself and my sensory over-load is what the helping professionals define as egocentricity or narcissism as if somehow I want to be that selfish and as if it means that I never care. I'm not sure, at this point in my life where I am on the empathy scale but I do know that I intellectually compensate for any lack of empathy and that in my own way, within my own limits, I try to care about others as I can. However, since I do not express this (often) in the "ways of the world" I am often judged as uninterested and uncaring totally.
Now for the tough part. The part where I am so bored and disinterested in so much. I haven't quite figured out a way, yet, to explain this to others without seeing them sort of back up with the inference that if I'm that stuck on myself, screw me. Like it's some callous choice I've made when it's not. Being honest about this does not win friends and influence people, that's for sure. It is not that individuals are boring as such. It is more about the fact that I see patterns very quickly from one person to the next and assimilate what that means in a much bigger and broader picture than the converstation or interaction is referencing and this leaves me feeling bored or disinterested because I have moved on from whatever reference point of communication that may have briefly been held in common.
I realize that my "moving on" in this way is likely another reflection of my egocentricity but to me if feels very much about survival. To not move on is to end up agitated and over- stimulated by repititious cycles of communication that are intolerable to me.
Facing my Asperger's is a monumental mix of emotion for me. It is a living experience and study in contradiction. There is both the desire to be "normal" and the desire to be me. What is most important to me, is to be me, to accept myself for who I am with the hope that some others will understand enough to do the same regardless of our differences. I was struck by the following quote:
"it is no measure of health to be well adjusted to a profoundly sick society" - Krishnamurti
So, the question is what is normal about wanting to be well adjusted? What is the prize that you get at the end of the day for fitting in? Just as some people eat the "Cracker Jack" for the prize, others, like myself, would eat the "Cracker Jack" for the "Cracker Jack" and want nothing to do with the prize, and would find that prize rather boring and uninteresting.
As I face who I am with a much deeper understanding of what that means I am relieved. Yes, relieved. I hope to continue to try to connect with people for short periods of time here and there and with some measure of consistency that as of yet I have not been able to master. That said though, I will grieve for what I don't share with the majority and learn to celebrate me for who I truly am. I can make no apologies for being different. I will celebrate the gifts that the universe has bestowed upon me to compensate for what many would describe as the handicap or undesirable difference that I have. I would not describe it in those terms though simply because the trouble with normal is that it actually does not exist. So as so many of you go about trying to continue to fit some concept of being that really isn't real and as you perhaps wish that for your kids, think long and hard about what it is you are seeking and why. Then ask yourself what is it that you think is so wrong about the way that some of us are just different?
I am determined now to use my strengths where they can do the most good and to focus on them instead of focusing on all that I don't do very well in the realm of relating, connecting and socializing. There is a silver lining in every cloud and I think I am now seeing mine much more clearly for the first time in my life. So, hope grows out of despair, after all.
as of December 24, 2001
This page is © Ms. A.J. Mahari 2001 - last up-dated May 5, 2002