There is an inherent and burdening paradox within the reality of being an adult with Asperger’s Syndrome. Central to the most devastatingly-challenging reality of Asperger’s Syndrome is its synergistic social impairment intrinsic to or juxtaposed to a profound social disconnectedness.
The intricate labyrinth of this paradox exists within the assumption that a social impairment in and of itself, however that is defined and experienced in each individual (AS) life is tantamount to social disconnectedness
Gregory B. Yates, in his writing, “A Topological Theory of Autism,” - the website - www.autismtheory.org/topotheory.html explains that the three founders of “autism”, Eugen Bleuler, Leo Kanner, and Hans Asperger, “clearly saw other features of autism as secondary to social disconnectedness.” and emphasizes that this disconnectedness “…is the central, eponymous feature of autism it is the primary feature…”-- “it is social disconnectedness that most defines autism…”
The degree to which there are differences, generally, between autism and Asperger’s Syndrome (AS), more specifically, in terms of this social disconnectedness varies greatly with each individual. It has been my experience that the manifestation of this social impairment and social disconnectedness also varies greatly between those with more classic forms of autism as opposed to those with Asperger’s Syndrome (AS). Even within those with AS the extent to which this paradoxical synergetic syndrome is present depends upon many individual factors including age of diagnosis, intervention, support, counselling and general educational intervention.
I experience this social disconnectedness, as an adult with Asperger’s Syndrome (AS), in ways that I imagine are more difficult for me and others like me than they may be for those with more classic autism. It is the awareness that one has with AS that often brings with it a more painful lack of connection. Many, like myself, with AS, to varying degrees, have strong desires to try to be as social as we can. This is, however, coalesced with what is an equally strong aversion to being social.
This paradox of simultaneously desiring and feeling aversion to social connectedness is born out of a lifetime of difficult and painful experiences in the social realm coupled with a lack of understanding and difficulty in truly being able to feel a sense of joining in what others are experiencing as a shared experience.
I am keenly aware, in the social realm, that while I have learned to do many things
that one is supposed to do from all accounts and appearances I do not experience
them in the same way that neuro-typicals (NTs) do. There is still this feeling of not totally
understanding the feeling experience of the shared social experience. This
reality is accompanied by the anxiety and the stress (overload to my system) that much of
this activity produces within me. To state it outright and forthrightly, I do not derive joy
from anything social.
My experience of joy is very much a by myself internalized proposition. Knowing this can be, at times, a source of frustration and pain. Even when I am social I am not really totally there. It’s difficult to explain this but as Yates explains, “Autistic people live like Tantalus*, with the fluent social interaction of others suspended before their eyes, out of reach.” I can relate to this. To try to actually join in and feel a shared experience socially is like reaching for forbidden fruit that
moves ever so slightly back every time I reach up and forward toward it. I have been in
many a social situation where I do just end up observing because the social interaction of
others is suspended out there before me and for me is out of reach in terms of experiencing it the way that others appear to be and report experiencing shared meaningful times that fill them up. Trying to socialize, which I don’t mind in small doses, despite the pain of it all, for me is so stressful most of the time that unlike my NT friends empties me out leaving me just wanting to retreat back into my own world.
The fact that most NT's describe socializing as being a "filling up" experience that adds something to them and I know that it is the opposite for me, I don't see this as needing to be defined as anything else aside from a profound difference after its recognition.
Yates continues with the assertion that, “Social disconnectedness is the horse of autism: Secondary features are baggage in its cart.”
Not everything about this social disconnectedness is experienced as baggage. That said, I think it would be highly negating if I were to say that this disconnectedness doesn’t in fact leave an adult with AS with some baggage. It does.
The most difficult aspect of this baggage, which I’m sure varies with each adult
with AS, though having, no doubt, some common themes, is that we are left to fend
for ourselves with it. There are (with rare exceptions) no services for adults with Asperger’s Syndrome.
In my own experience, the mental health issues and co-morbid issues that can
exist with AS and its incumbent or subsequent baggage, are not effectively being dealt
with by traditional Mental Health delivery systems. While there are some therapists
who will assist adults with AS they are not accessible to those without the funds and
even then they are rare as most, if not all resources are currently focused on children
with autism and/or Asperger’s Syndrome.
Today’s children are going to be tomorrow’s adults. The baggage that they will
encounter as adults will still be sitting here, as is mine and that of other adults with AS.
I continue to not understand the lack of services for adults and for those who are transitioning from adolescents to adulthood with all its more complicated issues.
I must stress here too that not all that AS brings to my life is about baggage. In
the arena of social disconnectedness and trying to navigate the world of social beings however, yes, I have some baggage that I am continually aware of, working
through, and trying to come to terms with. In this area, this baggage does impinge upon
my self-acceptance, still, though I’m getting through that more now too. This is the
reality of a paradox that adults with AS must not only live with but wrestle with in order
to not be left feeling less than. This is why I stress that we are differently abled as opposed to the common societal stereotypical assessment that we are just
disabled
Yates also asserts, “While some secondary features of autism are unpleasant, in a social world one autistic trait is truly devastating. That is autism’s defining characteristic itself -- social disconnectedness.
I have found this trait quite devastating. While I continue to make progress in terms
of what I have learned about mapping my social efforts I continue to find them often as
painful as they are anything else. I am still in the process of dealing with this fact. The fact that I have to live with a high degree of social disconnectedness that I have enough insight about to feel saddened by at times. It is here, I have learned, that my self-acceptance depends upon my ability to continue to learn and grow in my ability to use compensatory strategies to meet my needs in the adult arena of relating.
Yates states that, “Autistic people vary in their desire for social interaction. However, even those who do not desire social contact can be devastated by its lack, for thriving in human society depends on social ability.”
I agree totally with Yates here. I have known other adults with Asperger’s Syndrome. I’ve seen vast differences between them and myself in many respects. I’ve also noticed that there are numerous and vast differences between men and women with Asperger’s as well. (More on this in an up-coming article)
I have been devastated by “its lack”. The lack of socialization in my life. By what remains (or certainly feels like) despite my best and most fervent efforts to socialize,
relate, and be available in my primary relationship, a feeling of disconnectedness that often brings me back to a familiar pain that like a brick wall sitting between me and the
world of social ability, has and continues to affect my thriving in the way in which most
people define and value thriving
All is not lost here however. I am a great believer that even when diagnosed with AS
in adulthood, as I was at the age of 40, we can make progress. I have learned a great deal.
I continue to learn to compensate and to let those closest to me know what I need in order
to be able to build bridges to them and have them build meaningful relational bridges to me.
I also believe that despite not experiencing a kind of social ability that clearly indicates thriving to our human society, I am thriving and will continue to build upon
this thriving in my own way as defined by my own understanding, needs, wants, and my
continued dedication to straddle what is at times a very unforgiving philosophical paradox.
What is defined as social impairment, again, can be construed as disabled or contrastingly as differently abled. One must take to task the notion that we are all supposed to be the same or that we all must have the same values and capacity in the social realm.
Having Asperger's and knowing it should be a gateway to understanding not some societally imposed label that implies lack and that sees that lack pathologized.
It is my hope and my intention the more I come to understand my Asperger reality and the more I write about it that my readers will come to appreciate the differences that manifest in many ways that are the indicators of difference in brain functioning. That NT brain wiring is not superior to the brain wiring of those with Asperger's and visa versa. This is all about difference and more specifically, acceptance of that difference and allowing each group of people to live as they must and flourish as they will.
To this end, coming out of this most basic difference in social ability and social
connectedness or defined disconnectedness
it is my hope that the system and parents of children with AS will stop believing and insisting on trying to normalize the autism/asperger's out of their children. We are
born the way we are for good reason. Let society expand its definition and understanding of worth, and change itself, and stop requiring that those of us on the autistic spectrum change or have to fit the NT mold in order to matter, to be functional, and to be able. We are very gifted and talented in our own ways. Who we are needs to be "good enough". It needs to be "good enough" firstly to parents, secondly to society and equally to each adult diagnosed and left to fend for themselves, with Asperger's, in adulthood.
We need bridges of understanding to and from each other. We do not need to be the same. We are all okay as we are, differences and all.
•Tantalus - (Greek mythology) a wicked king and son of Zeus; condemned in Hades to stand in water that receded when he tried to drink and beneath fruit that receded when he reached for it. (Source: www.dictionary.com)
To read more about my experience of this paradox of social impairment and
profound social disconnectedness juxtaposed with my continued efforts to be more social and relational in spite of the stress and pain involved in stepping off of my
AS world to put a foot on your NT world please order my up-coming ebook The Paradox of Asperger’s and Relating
© Ms. A.J. Mahari February 1, 2005
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