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 recently, 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
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 (mostly social and relational) 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
interpersonally 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.
Freedom like a stone. Trapping freedom that frees me from
some previously unknown traps to trap me in known ones at present.
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
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
"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.
Next Article: Facing My Asperger Experience
as of December 24, 2001