The Legacy of Asperger’s Syndrome and Being Diagnosed As an Adult
There is a legacy left in the wake of childhood and adolescence lived unknowingly superimposed upon what is the foundational hard-wiring of difference and social disconnectedness that are central to the reality and scope of Asperger’s Syndrome and that form different ways of thinking and perceiving that are outside the ebb and flow of the landscape of the stratum of social terra firma. A legacy of defectiveness that my personhood was engulfed in and defined by through the judgment of the NT masses.
A legacy created by the reality of not having been diagnosed and informed so many years ago.
When the way one thinks, perceives, and experiences the world is then challenged and one is labeled weird, bullied by others for their differences as I was as a child, the legacy is one of ominously oppressive observation that leads to a negative association of all that it means to be who one really is. Being who I was as a kid was definitely not okay for so many reasons. Reasons that all these years later are all befuddling and bound together into one heterogeneous conglomeration of massive weighty wearisome foreboding familiarity.
Never mind the underlying reality of the social impairment of Asperger’s Syndrome the obliteration of any competent feelings of esteem and worth for who I was were annihilated. I fell of the wheel of life. Little did I know all those years ago that the wheel of social life that it felt like I actually fell off of was one that I never truly got to ride in the first place.
The reality of the social impairment and disconnectedness of the Asperger’s that existed underneath all of my experience unbeknown to me until I was 40 was formidable and painful and has definitely left in its wake an aching of longing as a legacy in my life. A longing that has been misleading. A longing that really wasn’t ever mine. A longing for all that I was told I was supposed to want, supposed to be, supposed to do and supposed to achieve, learn and be adept at. The longing was driven by how others defined me. It was driven by what others thought was who I should be, how I should be, what I should be interested in, what I should and should not pursue.
This long-enduring legacy in my life – this Asperger reality – cast a wide dubious and damaging shadow over my perception and experience in life and my psychological understanding of myself. There is nothing short of heart-ache associated with the great lengths that I went to try to pretend to be normal. I so tried to be what I thought it was that everyone else was. I failed miserably all over the place, and in each and every stage of life. (socially)
As an aside but also illustrative of the legacy of this hidden Asperger reality in my life, I was a lesbian growing up not knowing that, either, in a world that tried to teach me what my role as a taken-for-granted heterosexual woman was expected to be – that I would grow up, get married, and have children. When none of those things were unfolding in my life in my early and mid-twenties I can liken that experience somewhat to finding out about having Asperger’s and to having been banging my head on my Asperger wall as hard and as often as I pounded my psyche into the wall of sub-par woman for not getting married or having 2.5 children, to say nothing of the dog and the white picket fence.
I have managed the dog but that’s all of that dream that I was told I wanted that I could make come true. After all it was never my dream. It was society’s expectation of me. It meant I was flying in the face of a cultural norm. That’s lonely territory, but barely when compared to being socially clueless at the hands of what was most of my life a well-hidden and totally unrealized and overlooked enigmatic entity – Asperger’s Syndrome.
Legacy handed down from the past. A past in which a neuro-typical world tried to ram this round peg into its square hole over and over again. That took its toll. Legacy, the word, can also pertain to old or outdated computer hardware, software, or data that while it still may well function, does not work well with more up-to-date systems. That’s how I feel in a way. I feel that I do still function and in a way I have always functioned but much like an old computer functions, in a very tossed aside and not appreciated kind of way. I function differently from the NT masses just as an older computer functions differently than a newer one. It may not be adept at all the new bells and whistles of its social and user-friendly software but leave it to its own device, literally, and it will still get its job done, in its own way and its own time.
- Inside My Asperger’s Experience Audio Program
- Asperger’s Syndrome and Adulthood From The Inside Out Ebook
Falling Off The Merri-go-round of Life – A Ride I Wasn’t Ever Really On
My childhood was a world unto its own in so many ways as I look back on it. I remember my first day at grade school, kindergarten, I was four, almost five years old. I had been led to school by a neighbour girl after my mother had asked her mother if she would take me to school that day. This girl, who lived down the road was all of five. She was however more schooled in the ways of the world than I was. As we arrived at the school yard I was lost. I felt as if it all wasn’t really real. It was too much. Loud yelling and playing and screaming. Too many voices. Too much noise. The sun was so bright. I felt hot. I felt dizzy. I felt overwhelmed. None of those feelings were foreign to me, even at the age of four. I felt exhausted and the really alarming part of my day was yet to unfold.
With all of this play on the playground, all of the frantic mind-numbing activity, suddenly there was this very loud bell that sent a shrill pain of panic right through me. I didn’t know what was happening to me then or why. I just ran. I bolted. I took off. I ran all the way home and in record time. That was it. I was four and already I had enough of this normal life out in the what was such a foreign world to me. That bell had just blown a hole clear through any sense of being that I might of had. It had assaulted my entire existence.
I was of course dragged back to school, kicking and screaming by my mother. Once the bell was explained to me I learned to live with it. But, I could only live with it after I had made a point of knowing when it would go off and paying particular attention to that. I would worry about it and anticipate it long before its scheduled two rings each day. I managed to survive the bell ringing because I was able to plug my ears and somewhat protect myself from its daily assault on my being.
School, the merri-go-round work of childhood, was for me the very un-amusing ride off of which I fell abruptly, brutally and in many lasting ways. It made little sense to me for so long because I love information and I always loved to learn. I just could rarely go a whole day at school with all the stimulation, noise, and light that assaulted my senses in ways I had no reference point from which to understand.
As l recall from my childhood, while things were never really alright in my world, those shaky anxiety-producing experiences morphed into monumental trepidation of mammoth proportions when it was time, at the age of 12, to go from grade school to junior high school. It was a change I simply could not and did not cope with. I never knew why. From that point on I was on a mission to just opt out of what my imposed daily routine was. I had no way to cope with all the things that inundated me endlessly in all of the chaos that was class after class in sprawling buildings (we moved twice when I was in my two years of junior high) that I could never master finding my way around in.
Ironic that I would often get lost as I did in high school too. The getting lost just added to the reality of the fulility of even trying to be there at all. My school struggles left me feeling so damaged, so less than everyone else. I never dated in high school. I didn’t have friends at school and except for answering the odd question asked of me by teachers most days the whole day would go by and I wouldn’t utter a word. I talked to no one. I was suffering and suffering badly in so many ways. Some ways I found out about in my early 30’s as I dealt with mental health issues but I wasn’t really going to be able to put it all together in a way that imperfectly as hell made perfect sense until, at the age of 40, I found out that I had Asperger’s Syndrome.
- Inside My Asperger’s Experience Audio Program
- Asperger’s Syndrome and Adulthood From The Inside Out Ebook
When It Hurts – And it Does Hurt
Though I did not know I had Asperger’s Syndrome, as I said above, until I was 40 years old there was always its palpable pain present in my persecutory experience of what it meant to just fight to exist. So often so much hurt. The lights at school hurt. The cafeteria noise hurt so much I retreated to eating my lunch alone in the washroom.
I just couldn’t relax enough amid the noise and lights of the cafeteria to actually swallow food in there. The pressure of doing what everyone else was doing also really got to me. The socialization that was everywhere confused and overwhelmed me. I never really knew what to do.
I have lived in a world of hurt. When I could retreat to my own world I could find relief from most of my hurt. I would then only have to endure the enigma of my weirdness. The consternation of the judgment of others that I was beginning to impose upon myself. The reality that I wasn’t cutting it. The fact that all I knew I wanted and needed was my quiet dark room. My own world and to be left alone in it.
When it hurts I wonder, where is it I go? When it hurts I wonder, where is it that I am? When it hurts I wonder where have I always been? When it hurts it puts me in touch with the infinitely infallible precision with which I have always been here. Here, under all of this pain. Under all of the “supposed to’s” and feelings of being different and weird.
Here, I have always been – here. Way down deep under it all. Under it all. So under it all. Under the constriction of trying to pretend I was normal. Under the negation of not knowing how to be who I really am instead of who everyone has tried to tell me I “should” be.
What kept me so under it all was really not knowing or understanding what “it” really was or that “it” was there and that “it” had so much influence and meaning in my life. It – Asperger’s Syndrome – was defining much of my perception (socially) and my experience in life (emotionally) and I didn’t even know it.
I think I get now, at the age of 50, that when I was flooded with such grief and utter despair that caused me to feel hopeless and suicidal for the better part of my 44th year – a year I spent actually trying to come to terms with having been told I had Asperger’s Syndrome four years earlier – wasn’t as much about all that I’d come through that had to do with mental health issues as I had originally thought.
There was that for sure. There was a sense of loss that I had worked so hard to become mentally healthy and to recover from so much – I wanted to be normal – damn-it – only to come to this brick wall of “you-are-never-going-to-be-normal-period – Asperger’s Syndrome.
Okay I relent, I surrender, I am not ever going to be normal That is finally okay. I radically accept that. I did, however, in reaching to be normal recover and heal from major mental health issues and I can honestly say that it was my quest to be normal that led me to the gift of average mental health – nonetheless. There are truly serendipitous blessings in all things.
Life has taught me so many times the hard way that it is important to note and notice and be grateful for all the times we do so much for one thing, that we can’t have or may never attain, but that in those efforts, there are other rewards. Rewards in the way of increased awareness that answers questions that we didn’t even know we had – the questions that even if we could have more awareness we’d likely be far too afraid to ever ask.
Questions that when understood by the unveiling of their unasked for answers solve the riddles we had yet to even ponder in any consciously-aware way.
This is why I have come to be a firm believer that it is so important to learn to live the questions. Living the questions of our lives and ourselves and our pain leads us to answers that we have no reference point for which to search until our experience in life unfolds in the form of questions. Questions arise when we meet with obstacles.
Obstacles are not stop signs.
In my experience obstacles are detour signs that take us down the highways of life that will yield us the bounty that we really need to uncover in our lives. If I had not been led down the scenic highway of having been sexually abused, raised in a dysfunctional abusive family, and having been diagnosed with a personalty disorder I would not have even been on the car in search of the normal whose yield to me, though it fell short, was not only average mental health but also the revelation of Asperger’s Syndrome in my life.
Asperger’s Syndrome the one remaining piece of the puzzle of my life. The left over lost legacy of what it means to truly be who I am.
But even more so than that dream I had to be normal the despair and the grief had an entirely different layer to it. I have just recently and slowly uncovered this layer. I am still uncovering it and really I may always be in some stage of its further being uncovered. This layer has all to do with the painful experiences of my childhood and adolescence.
Experiences that were enriched through their ability to cause me pain, in retrospect, no doubt, because I have Asperger’s Syndrome and I had no way, then to know that, as I know it now.
I had not yet been formally introduced to my Asperger wall of pain or its unending burdens and blessings in my life. There it was, my Asperger wall, stone cold, thick, inpenetrable, my worst enemy and my best friend.
For years I had no reference point for the foundation of my difference or for this wall that I would slam into over and over again. A wall, my Asperger wall, that I still do slam into with predictable regularity.
It is my Asperger wall that holds the very sacred parameters of my ability or lack thereof to find my way in the social sphere of life. As I continue to push the limits of my own social impairment and social disconnectedness I continue to not only hit my Asperger wall, but I get to know a little better each and every time I hit it. I learn just a little bit more about the nature of the pain of being one way in the world, autistic, and of being constantly expected to be another way – neuro-typical. There are so many lessons that fall to the foot of my Asperger wall where I sit, from time to time, crying and still trying to make sense of it all.
My Asperger wall is a sacred and paradoxical reality. It is the lighthouse of my limitations and the harbinger of all my potential to continue to find compensatory coping strategies that little by little do in some ways broaden the horizons of even my social understanding along with my ever-deepening understanding of who I really am and how okay that really is.
© A.J. Mahari December 2, 2007 – All rights reserved.
A.J. Mahari is a Life Coach who, among other things, specializes in working with those with Asperger’s Syndrome and their partners, relatives, or friends. A.J. has 6 years experience as a
Life Coach and works with clients from all over the world.
[email_link]
Function Versus Dysfunction and Asperger’s Syndrome
The very fact that Asperger’s Syndrome (AS) is largely described and defined as being (among other things) an apparently “inflexible adherence to specific, non-functional routines or rituals” is an enigmatic axiom that deduces in a rather disjointed and distorted way that, essentially, there is only one way to be in this world.
Why is that?
So much of who we are is defined and judged upon what we do or what we don’t do and not who we are at all. There seems to be an ever-growing list of disorders that suggest to me most everyone has “something”.
What does it mean to be functional?
Generally, in Neuro-Typical (NT) speak to be functional is to fulfill a specific occupation or role the way that some majority does and decrees it should be fulfilled which is fine if you are NT.
Being functional seems to also mean to have or perform a function that is judged as worthy, desirable, normal often made more valid (apparently) by how much one is rewarded monetarily for performance of said function.
Function also is defined by judged capacity to do certain expected things in some pre-determined and pre-expected ways. For many, especially those who are NT, it seems to me that function and the doing of said function(s) is (are) all tied into a prima facie raison d’etre. For most with Asperger’s being is raison d’etre enough, notwithstanding the often absent patently unquestionably visible apparent self-explanatory intractable impetus to do as everyone else supposedly does.
Asperger’s Syndrome is defined by professionals as being all about “dysfunction” and “impairments” by those who are Neuro-Typical. I don’t think any one of us with AS feels this way inside as long as we don’t allow this NT subjective evaluation to condemn our sense of self, self-worth, and way of being in the world.
When you consider the following definition of Asperger’s Syndrome as outlined in the DSM-IV ask yourself what is wrong with what is described below if you don’t impose your own way of being, your own expectations of others and your own judgment upon it. My point being that what is being described below is fact (as it varies for those diagnosed with AS) and that it is merely a different way of being in the world until you impose your different ways of being or you ascribe your way of being (for example the NT way of being in the world) as being the right way to be, to function, interact, relate, and act.
299.80 Asperger’s Disorder
Qualitative impairment in social interaction, as manifested by at least two of the following:
- 1. marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
- 2. failure to develop peer relationships appropriate to developmental level
- 3. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people(e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)
- 4. lack of social or emotional reciprocity.
(B)
Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
- 1. encompassing preoccupation with one or more stereotyped and restricted
patterns of interest that is abnormal either in intensity or focus - 2. apparently inflexible adherence to specific, non-functional routines or rituals
- 3. stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
- 4. persistent preoccupation with parts of objects
Not everyone is wired the same way. Not everyone is supposed to be the same. Not everyone has the same values or goals or objectives. Not everyone is caught up in the race of all it means to be living life.
Some, like many with Asperger’s, know what it means to be much more fully aware and involved in what life is – not the living of life, but the experience of being in life.
Executive Dysfunction – Is It Really The Heart of Aspie Dysfunction?
In the video below I talk about my experience with executive dysfunction and my philosophy about that.
I have come to recognize this and to absolutely value this about my own experience in my life. Experience that is interwoven abundantly into the tapestry that is how I am, who I am, and why I am as I am. This is functional and acceptable to me. I am not Asperger’s Syndrome. I am not just a person with Asperger’s Syndrome. I am who I am meant to be just the way I am Asperger’s and all.
Being in life does not require any judgment or evaluation of how one functions – what is determined to be the “ideal” in terms of functioning is to most with AS an infringing invading and rather foreign and most unnecessary construct of the masses.
Therefore, is an adult with Asperger’s Syndrome failing to function or is he or she functioning fully according to his or her brain hard-wiring and objectives? Should this be judged? Were we all ever really meant to be the same? I think not. Can those of us with Asperger’s Syndrome evaluate the merits of being Neuro-Typical any more accurately than those who are Neuro-Typical can evaluate the merits and worth of having AS? I think not. I know that what I know about being NT is limited and I don’t have the same experience of life or of living life that NT’s do; just as NT’s do not know the experience of having AS. We need to value every individual for being who he/she is as he/she is whether he/she has AS or is NT. We need not judge what we perceive or some have sought to define as each other’s ways of functioning
The fact is that it is judged daily by those, mostly NT who have a different mind-set, different objectives and have many social and relational values and desires that they hold in common. Such is not always the case with those with AS. In my own experience, I definitely only know one way to get anything done, that is the way that I do things according to what is “normal” and actually “functional” for me. My routine, how I do things or the things I don’t do or have interest in doing are only dysfunctional to those who are different from me, those who are NT and don’t have Asperger’s. It could just as easily be argued from an Asperger point of view that all that makes the NT world or planet spin is dysfunctional.
Add into this albeit arbitrary discourse at present that in the fullest extent of what it means to be engaged in life, to “be” a “being” in life is, I believe, grasped more deeply and fully by those with AS than it may be for most who are NT. NT’s are fully engaged in living this life as opposed to being in this life.
This difference, while it might seem irrelevant is actually the very cornerstone upon which function and dysfunction are defined by the masses or mental health professionals.
The very ways in which differences between what is labeled functional versus what is labeled dysfunctional are defined and applied are arbitrary and designed, for some reason that is beyond me, to attempt to ensure a defined and adhered to “sameness” that defies logic anyway.
The difference between functional and dysfunctional in many ways is truly in the eye of the beholder. It is in the mind of he/she who would judge. The fact is that we still, as a world, do not readily accept difference without judging it.
If thing or person A is different from thing or person B, who gets to decide which one is better, more desirable, to be more valued than the other?
I have suffered a lot and been very hard on myself with dire emotional consequences for having Asperger’s and subsequently from the negative feelings I have associated with all that is defined to mean from the outside.
If I hadn’t worked it through I’d still believe I was weird, not normal, inferior, less than, stupid, useless, lacking, and I’d still be tearing myself down and labeling the way that I do function as “not good enough”.
I now know that having Asperger’s, is for me, very much about being free of so much that ties NT’s to the “party line” of what life, let alone living life is “supposed” to look like and be about.
The more I bought into the judgment of others — mainly from my family of origin’s expectations of me growing up that I internalized as devaluing of who I was and that I have carried as internalized shame for so many years — the more I was unable to function in what functioning is and looks like to me and for me.
For those with Asperger’s Syndrome if you just accept that you are “dysfunctional” without challenging this it can lead to a very poor self image, very low self-esteem and endless pain and inner-turmoil that can make relating to those on planet NT even more complicated than it may already be for you.
Those with Asperger’s Syndrome function as they are meant to just as do those who are Neuro-Typical. A simple conclusion that circumvents the need to judge, compare, or label one dysfunctional and the other functional. We can learn to understand each other and to celebrate even our most complicated differences.
© Ms. A.J. Mahari June 27, 2005 – additions February 6, 2009 – all rights reserved.
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Reflections on an Asperger Diagnosis In Adulthood
Learning that one has Asperger’s Syndrome as an adult is a different kind of challenge than those who find out with systemic and parental support and guidance in childhood. It gives one pause for much reflection.
Having Asperger’s Syndrome (AS) and knowing about it in childhood is one thing and being diagnosed as an adult is another. Trying to cope with AS after a life time of experiencing its many challenges and having not known the reason for its impact in my life has brought to the process a lot of reflecting and grief for me.
One of the most difficult challenges of dealing with an AS diagnosis in adulthood, for me, has been the reality that while I was finding all of this out there were no services to help in the necessary transition, adjustment, or understanding of what it will all mean in my life and for my future.
There is much to reflect upon when it comes to my experience of learning that I have Asperger’s Syndrome at the age of 40.
The struggle and process of accepting AS, understanding how it plays out in my life, and affects my life generally is a gradual, still, unfolding one. This is especially true in terms of working hard to meet my partner (NT) in the middle of all that is complicated communication and relating.
One of the biggest challenges, in adulthood, is how to not only further educate yourself, after being diagnosed with AS, but the responsibility of informing and educating friends, family, and significant others so that relationships cannot only be maintained but enriched, viable, and as painless and stress-free as possible.
In my own life I have found that the more I relate in my primary relationship, the more I learn about how Asperger’s actually impacts my ability to relate. This is important to learn, to know more about and understand. However, with each new revelation and this further understanding comes pain, sometimes embarrassment, always grief and tears.
There is a natural tendency to want to protect that which one may feel leaves them so different, vulnerable, weak, or lost and yet for an adult with AS, it is crucial to trust your significant other with this tender and vulnerable area of lack of knowing or understanding relationally as NT adults relate and communicate in order to learn more and be able to push the limits of your ability to in fact relate, communicate and learn to negotiate.
The most difficult area, where I find this really impacts me, in terms of my relationship centres upon trying to learn to be more flexible, to manage the inevitable stress and agitation that result from a lack of unpredictability and/or changeability as well as learning what negotiation is and looks like. I may not always get there but when my partner is patient and I am able to follow through with my own communication process and differences in this area, I find that we can meet in some middle place that allows us to hear and understand each other and results in us reducing the amount of conflict between us.
Generally, then, and to summarize what I am reflecting about here, if you are, like me, an adult who is diagnosed with AS at an older age, it is very important that you give yourself time and space to accept this, to grieve and feel about it and to find ways to bridge the differences and gaps with those neuro-typicals (NT) in your life so that you don’t have to be so isolated.
I am learning through just living this and a process of trial and error that healthy risk, trust in myself, and in those I know, and in my partner mean that I can celebrate my differences, rejoice in the gifts of AS and not lose out in all other areas of NT life. I choose to step off of my AS (autistic) planet and onto the NT planet more often than ever before now. I also, at times, straddle both planets. There are times when just being on my AS planet also is very necessary. Making these shifts isn’t easy but the more I choose them the more I am able to better cope with them.
I have learned, that in fact, to some degree, I can have the best of both worlds. This is not the case without agitation, some stress, and pain. The key here, I’ve found, is learning to tolerate and cope effectively with the agitation, stress, and pain.
Though I can and do reach out to others and to my NT partner in ways that require me stretching and reaching and in ways that don’t feel first nature to me, I also very much have come to accept myself as I am. This acceptance is still growing. It is imporant because I had to come to learn and really know that it is okay to be different. I am still likable and lovable even though for many and for my NT partner I am (at some times more than others) quite different. In fact my NT partner even values some of my eccentricity and quirkiness. There is so much room for bridges to be built. Don’t let the fact that you have been diagnosed with AS (as an adult or at all regardless of age) leave you believing that you can’t learn to find your own way to the kind of communication and relating needed to share time and space and feelings with others.
It is my conclusion, upon this reflection that what I have to endure at times to be in a primary relationship and to have love and companionship in my life is well worth it. There are times I still feel pretty green and fairly lost but if I allow myself to be there and not judge myself I find I can navigate those waters, in time, quite effectively and with positive results.
There are times I really enjoy a lot about space, aloneness, and what it means to live in a more natural AS/autistic realm. However, I don’t have to be totally there.
Even those of diagnosed in adulthood and without services can learn to relate and function in ways (that while they feel foreign) allow us to know what deep connection is about (even if we need respite from it and it is stressful more often than not) and to know what it is to love and be loved.
There is life after the AS diagnosis in adulthood.
There can be relationships and relating. Educating oneself is of primary importance. Also of utmost importance is the realization, understanding, and acceptance of ourselves and the reality that while AS makes many things in life somewhat more complicated it bestows upon us gifts and skills that we must celebrate and fulfill our potential with, through, and because of.
© Ms. A.J. Mahari 2004