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The Grief Storm of Asperger's Syndrome

By A.J. Mahari

I guess I had other ideas about who I was and where I was in my life, around this time last year. I haven't written anything else in this section since November of 2001. The main reason for this is that I have been very busy -- this is a good thing, most of the time. The other reason involved my evolving and how I needed to take some time to get more perspective on it before I could write some more about it.

I have learned a tremendous amount, generally, in my life in this past (almost) year. I also find that current world events have added to my perspective.

At the heart of my coming to terms with having Asperger's Syndrome, what that has meant in my life, what it has meant over the last year of my life, what it means now and what I expect it to mean in my future, has been some of the deepest grief I've ever felt in my life. It is a grief that goes way deeper than just the grief or mourning that is sadness.

Grief, a longing for something that is lost, whether one ever knew it or not, a prevailing sadness that tinges everything else, is profound enough but, when mixed with despair it can take all the gumption one has to hang in and endure it and find ways to live with it.

Then there is despair. My grief-storm in the wrestling to come to terms with having Asperger's Syndrome has very much been a desolately- determined yet driven dynamic mixing hopelessness with all the cognitive correction I could muster to endure the accompanying abyss of loss.

Despair, unlike grief, is the absence of hope. I have found it very difficult to deal with this aspect of it all because in terms of my relating in any intricately interconnected and consistent way, hope is next to non-existent. I can accomplish this when I choose to more than I used to be able to but not for very long at a time and not without respite from it for sometime thereafter. There is the simultaneous realization that desire does not always meet with possibilty and that what is conceived of, or thought about, cannot always be matched with "average" or "common" emotion. It is the derailment at the intersection between emotion and cognition that gives rise, time and time again, to a familiar (or year old known now) cycle of despair. What I have found in the last year though, is that the despair is not as strong, overwhelming or long-lasting, as the most initial bout of it was last year when I first tried coming to terms with Asperger's.

The "grief-storms" come in waves, now and again. They still bring with them the hopelessness of despair and an urgent angst-filled agitation that I've learned just must be endured. It can not be changed. It abates now and again but it never goes away. I find when I'm busy, at times, that I realize I haven't felt it strongly for a period of time. A key thing for me now is not living in fear of it. I accept it when it comes. I know what it is. I understand it. I grieve because of it and through it.

Even though at base some things aren't changing, my ability to roll with these grief-storms is heartening. Last year, the initial grief-storm of realization felt like it was really going to swallow me whole. My entire life, every minute felt clouded by the reality and starkly stinging surrealism of Asperger's in the face of some collective shared "social reality" of so many.

So, what has changed?

I still have Asperger's. It still sets me a part, if not noticeably to anyone, certainly, noticeably to me, inside. It still hurts. It still isolates me (though not to the same extent has it has in the past). It still leaves me in despair relationally. What has changed is my willingness to accept that this is just a part of my experience. It is a part of who I am -- not the sum total of who I am. It is no more a problem for me than the many other issues faced by others. It's not like I'm imperfect alone. No. It's not like having Asperger's means that I am "less than" anyone else. No. Coming to really understand this has made a tremendous difference for me. I am even more at ease around people. It amazes me.

"People often say that this or that person has not yet found himself. But the self is not something one finds, it is something one creates." - Thomas Szasz

Each "self" regardless of difference must be created. Each "self" has challenges to struggle through. The real proof in the pudding is how we decide to cope with these challenges, not which challenges we are dealt. The difference that I live with, though profound in some moments, is really not that different from the many differences that many others share with each other. I have seen a lot of growth, in this last year, in the "self" that I have continued to create and to learn how to nurture unconditionally.





"If there is anything the nonconformist hates worse than a conformist it's another nonconformist who doesn't conform to the prevailing standards of nonconformity." (anon)

Here I find myself, creating my "self" most creatively. I am a nonconformist for so many reasons, not the least of which, is Aspergers. Okay, so... I don't however, conform to the prevailing standards of nonconformity. By this I mean I keep working to bridge the gaps that exist between my autistic world and the world. Why? Because I can keep growing, learning and coping better. Asperger's means many things. But, I have come to realize it is not a brick wall. No two of us are exactly alike and the diagnostic criteria reads like a manual of the predictable and cliche. I am neither. I am unique. I am not some stereotype that fits all categories or assumption based upon a diagnosis. Figuring this out in the continued creating of my "self" and what it means to be me has given me the freedom to break out of the chains that sought to bind. There is comfort in this.

"A bird does not sing because he has an answer - he sings because he has a song." -Barbara Johnson

Just like the bird with a song so too do I have a song. My song is my purpose and I am finding I can "marry" my passion and purpose together with my gifts. Gifts that largely exist because I have Asperger's. It's that old axiom that for every burden there is a benefit. When something is taken away, something is given. When something is lost, something else is found.

The gifts that accompany my Asperger's, the very gifts that drive so much of my difference, once I accepted them for what they are, what they mean, and the responsibility they imply, well, I met with a kind of joy that no socialization could ever hope to provide me.

So, I carry on. I keep working at self-acceptance. I have found the Grace to allow the grief to wash over me. The grief burrows itself deep within me. Regardless, in my own unique way, I rise up and to flow out, creatively, through my connection and service to humanity. This instead of the pursuit of socialization. I accept that I will find my own individual outlets in the singing of my song that will give my life purpose and my soul the 'food' it so hungers for.

If we were all the same, how would we mirror to each other, through our differences, all that we need to teach each other? That's right, there's no complete "normal" out there that is beyond learning. So, while we are all at different places of coping and functioning, all places are worthy ones, and unfolding as they should in the grand scheme of life.

Accepting the grief makes self-acceptance much more possible.

My song is a lot more profound, calm and comfortable of late. I am thankful for that. I have learned much on this journey already. I know there is more to learn. I welcome those lessons. I celebrate my difference. I refuse to be shamed for being different anymore. This is my heartsong. The celebration of my difference, owned and accepted, having been grieved for what seems an eternity.

Each of us has a song. I am learning more and more about my song. My song, no matter how differently it is lived and offered, is still a worthwhile song.

"Hope is not the conviction that something will turn out well, but the certainty that something makes sense regardless of how it turns out." -Barbara Johnson

And oh, the sense of it all. That renewed sense of hope is worth the pain and lostness. It is worth the aloneness, the isolation, the lack of intimates. I have a strong sense now that the despair has profound purpose. The grief is meaningful. Regardless of how it turns out each and every time I cycle through it, there is growth and I am still here. Each and every time I step out of the despair and the grief-storm, I am stonger and I know myself just a little bit better and I get to live the reality that, like the bird, I do not sing because I have an answer, I sing because I am the song that God intended be song through all that is different about me.

I can't explain this last year and how I've managed to survive profound despair to have it melt away to brief storms of grief only to see them evapourate time and time and again and to have moved to a place of much better coping with all that was just too stressful in the past. Much of what I have learned in this past year has revolved around learning to stop judging and comparing. Above all I have stopped competing. I am running my own race. Keeping my eye on the prize that is the fulfillment of my own spiritual purpose. There is untold peace and Grace in this. What a miraculous absence of anxiety. Anxiety that used to be my worst enemy daily until a wise therapist said to me (last year) that anxiety comes to tell us something we need to know, learn or acknowledge. So much that was so difficult has changed. Yet so much remains the same. That is the oxymoron of my experience.

Someone said to me one day, "Stop trying to explain yourself, just let yourself unfold to me. I like you. I want to just get to know you." Wow, simple. Way too simple. The acceptance of this, through Grace again, has lightened the song that I sing because I have purpose, regardless of the fact that I have Asperger's. Creating a "self" that is authentic and being the best me I can be, regardless of difference, has shown me that I can connect with others to the degree that I experience that connection. That is my best. And yes, that is good enough.

I am now able to be me instead of trying to endlessly explain myself. It is in and through my being me that I am actually finding that I can be understood and that I can stretch to understand others in ways that I wasn't sure I'd ever emotionally get. The living of life, like the singing of the song, because, is the way to unwind your wonder.

I now know loneliness in both worlds. I continue to feel the grief, in waves, it comes and it goes. Now, more than ever before, it is mixed with periods of walking through the gate of self-acceptance as it swings back and forth in the storms of my grief-stricken self. I am, however, getting somewhere.

The song that I sing, my song of "self", is not to seek an answer but to express my seeking. The universe is open to each and every way that we, as individuals, seek what it is that we need to find.

© A.J. Mahari, October 11, 2002

The journey, not the destination, becomes a source of wonder.

-- Loreena McKennitt --

A good traveller has no fixed plans and is not intent on arriving.

-- Lao Tzu --

Next Article: Continued Grief and Growth

as of October 11, 2002