The pain of coming to terms with having Asperger's was very real for me. There was a tremendous sense of grief. Grief for all that I suffered through to try to be "normal" and grief for how short of "normal" I always have been. There is also great relief to know that I am not crazy and that not everything can be traced back to an abusive past in the sense that some of what I experience is not choice/emotional but neurons/physical. The greatest challenge I face right now is trying to figure out which is which. This is not easy.
There is a certain amount of relief in coming to know that one has Asperger's Syndrome and that one is NOT crazy. However, being diagnosed as an adult can be a very trying and lonely experience because there just aren't any supports out there.
There is an incredible grief, that I've felt, at all the years of my life that passed by with me having no way to understand so much of what I experienced in my life. All the struggles I had to communicate (at times, especially socially) along with the struggles to try to "share" experiences (again, largely socially) with others. I knew that I was missing the boat for sure in many ways but I never knew why.
All those years of not "getting it" socially and never knowing why. All those years of not "belonging" of being "teased" and "bullied" make more sense now somehow.
As I work to accept this I have looked around for more information and support. I am appalled really at the lack of information out there for adults with Asperger's. Why is there such a lack of it? The extreme focus on children seems to me to be very short-sighted. Children are growing into adults every day and what happens to them when they cross that threshold? I'll bet they fall into the same abyss that so many of us adults live in. What then? Who is going to wake up and start to ensure that those of us who are adults with AS get the help and support - not to mention understanding that we need and deserve?
Coming to terms with this label that explains so much about why I am the way I am brings with it a measure of understanding, but one that so far, that for a time, left me weeping. Yes, weeping. I have found this (as I always have) very painful. The most painful aspect of it is the lack of understanding of so many others. Having to try to explain myself at the same time that I am in such pain and grief is really only adding salt to the wound.
So many people, in efforts to help, I think, go on about how they are different too and how I'm apparently like them. If they only knew. If they only knew what I really feel like inside. If they only had a grasp of some measure of understanding of all that I don't feel that I'm (apparently) supposed to feel, maybe then, just maybe then, they'd get that we are not the same. Why do so many people invest so much in trying to "make me the same" and/or tell me I am the same. They do not feel the what I feel. They do feel what I don't feel. They just don't get it. They don't get my world any more then I get their world.
I have awakened to my loneliness and the despair is overwhelming. I simultaneously experience desire and disinterest in terms of communicating/relating to/with others. Efforts made to "socialize" only end with me experiencing abject boredom and lostness. I have learned also that no one wants to know this and that everyone (if told) takes this personally, just another reality that walls me in even further. I have such disdain for group dynamics, "pack mentality", the seemingly shared commonality of the masses.
Why do people need/want this? This is the place where I can't help but be what others refer to as defiant. I must resist all that is so overwhelming that it leaves me with sensory overload. Sensory overload HURTS! It is aggravating, anxiety-producing and painful. It is the point (if not sooner) at which I MUST get away. I must be alone. I seek out a dark, quiet and low to no stimuli spot to recuperate from the utter assaults to my senses that so much of "average everyday life" is.
In watching others socialize it appears to me that they get something pleasurable and or enjoyable from it. This I do not understand (beyond intellectually). This I have never felt. Still, some try to tell me that I "must have felt it, and that perhaps you just aren't aware of it." Oh please! Whatever! Why are they so invested in trying to invert my reality and make it be what their reality is and what it seems they "need" mine to be? Why? I can sit and watch socialization but it does not make me want to do it. It does not make me feel it. I only feel as I have always felt, alientated, lost, and on another planet.
Three years ago now, however, with a very in-depth examination of this (I went back to therapy) and it awakened me to a sense of loneliness. I think I have somehow managed to put a few toes of one of my feet on planet "social Earth" and this has left me spinning, falling on my own planet, whirling around, lost, and trapped between the reality of the masses and my own reality. Trapped between the sense of wanting to "socialize" and the reality that I can't feel any pleasure from it.
Trapped. Trapped to the tune of trying to be what others want/need me to be to relate to me it seems. Trapped between trying to "act" in ways that bring acceptance as opposed to rejection in what seems, at times, to be desperate attempts to open my world up to others.
I think others connect with me sometimes. I've been told I'm very likeable. Yet sadly, these connecting attempts of mine, for the most part, fail, over and over again. At least I think it's failure? Or I think I'm being told it's failure if I don't FEEL as others feel?
I know people, whatever that really means. People may feel or believe they know me. But truthfully, they know only a part of me, the part of me that sits through agonizing anxiety to share space with them. The part of me that keeps wanting to push as far forward as I can in terms of "relating". The part of me that feels so painfully isolated no matter what I try to do. Isolated by the reality that I cannot and do not feel as others do when it comes to what the essence of "average" connectedness is.
I think the plea of all with Asperger's goes something like this:
"Please don't pull away from me if you know that I am rotely trying to relate to you. Please understand that I want to feel what others share, I just can't get there. This does not mean I am not human. It does not mean that I don't want your understanding. I do. I can't empathize with you - I don't know how you feel. I have a lot of difficulty trying to communicate what I feel or don't feel with and about others. I am afraid you won't understand. Can you allow me my difference? If I tolerate your planet's reality can't you think about tolerating mine?"
Right now I have a strong sense that I am banging my head on a wall trying to push through things that I just may never get to the other side of. And so the struggle to accept my limitations continues. The struggle to fully identify and understand them continues as well.
The paradox of growth, change and understanding, possibly even connection, is such that it is only through the accepting of what we cannot do or be that we can start (again and again) to discover who we are and can be and what we can do.
Being an adult diagnosed with Asperger's is not easy. While it is frought with grief, other emotions, frustrations and so forth there is no denying that Asperger's brings with it also many gifts and blessings.
I am beginning to learn how to celebrate who I am by letting go of who I am not. And, by ending the comparisons from which I suffered greatly for years.
It is okay to just be me. Limitations, gifts and skills and all.
It is necessary for all adults with Asperger's to learn how to best cope with the challenges so that they can get to a place of personal celebration of all that they are, regardless.
Asperger's is not a disease. They call it a syndrome. It is viewed by some as a disorder. Many of us adults on the Autistic Spectrum, including many with AS are now speaking out, as am I, to say that while we may have differences, who and what we are (especially true for children with AS as well) is not people who are defective and need to be fixed or changed. We just need our differences to be accepted and our strengths to be as considered as what some see as
There is a lot to be said for the unique individuality and the unique creative and intelligent difference that Asperger's fuels.
We don't need to be fixed. We just need to be allowed to be and to be supported in fully understanding our place in the world. Each one of us has just as valid a place as anyone else.
© Ms. A.J. Mahari May 2004
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