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Aspie Confession – Personal Update March 2010 – to The Pardox of Social Impairment and Profound Social Disconnectedness

This is an up-date to the article I wrote in 2005 entitled, “The Pardox of Social Impairment and Profound Social Disconnectedness”

2010 Up-date

It’s now been five years since I wrote the above article, orginally posted on my website. I am in the process of moving those articles over here to this blog.

I have learned even so much more in the last five years. The paradox of it all, however, continues to be an important and palpable one. Why? Simply because the more I learn about certain aspects of neurotypcial socialization – which is itself somewhat of a continuum – the more I also continue to maintain some levels of still not getting it, exactly.

What Does This Mean?

Well, it doesn’t mean that I don’t understand, to some degree, what most neurotypicals describe their social experience, goals, wants and needs to be. Intellectually, yes, I get that. I have asked many friends about that and what they socially enjoy and why. In fact, they’ve come to be somewhat entertained by this in a loving way.

The paradox that remains for me, however, is that even though my understanding, my exposure and my ability to socialize have continued to increase, what hasn’t changed is that I really am not drawn to do it – according to my friends – often enough. But, often enough for whom? Them. What might seem like not often enough for my friends is often more than I even care to entertain myself. It’s often more than I want to be that connected. And so the journey continues.

Does that mean I am a hermit. No. Would I like to be? In many ways, sure. Maybe I’m part-time hermit?

There is such a rich reality to having Asperger’s and to being blissfully involved in my own world and the pursuits found within that world and my narrow focus of a few keen interests. I am not, however, totally limited to that. It’s just the most comfortable place to be.

I have long-since realized also that the way that I am – ooooh, what does that really mean eh? The way that I am in terms of not desiring a lot of social contact for the sake of socializing means that I have more time to pursue my passions and purpose. My work. I think that is important. And yes, I have found much more balance between my world and planet-neurotypical in many ways. I have found much more balance between my interests and work (one in the same really) and taking time away from that do to other things.

I am left still though with a knowing, if you will. It is okay to have Asperger’s. It can still be challenging, absolutely. But I have come to appreciate the growth that each challenge brings with it. Sometimes over and over again. Sometimes in ways that cannot find freedom from the circle of moving in and moving out and what it actually always mean to be someone with Asperger’s versus those who are neurotypical. It’s much more peaceful than it has ever been.

Yet, there are times when I can still feel the differences. Times when I encounter the stigma or prejudice of those differences. Times when some may think me rather odd when really I am just not sharing some things in common with vast numbers of people who are sharing their social desires, wants, and needs in common.

The paradox is one of a deep and profound connection, a very compassionate and caring connection I have with humanity in the macrocosm and the reality that that doesn’t unfold often the same way in the day to day microcosm that is my “social” or “relational” life. It can when I want or need it to. I just don’t want or need it to that often – or as often as many neurotypicals do. This of course, doesn’t mean I always get my way. No. I am here for the person I am seeing (in a relationship with but don’t live with) and I am here for friends. I like and prefer as much “my world” time as I can have when I can have it.  But, I do not neglect to stay in touch with my friends. They just know what a great thing it is that I finally joined the iPhone universe and we all are grateful for texting. This means they can reach me more often and easier than, say, in person or on the phone.

Is There Room For Me to Be Misunderstood?

I have no control over the answer. The answer to that question lies with anyone and everyone I will ever meet, relate to, talk to, work with or be in anyway known by, to the varying degrees of what being known is and means in various types of relationships. It lies with those who know me personally. It also lies with you, the reader.

Why?

Because understanding and respect, or lack thereof,  for that matter, are dependent  upon where each person is in his or her own thinking. Are you in the pardox? Or are you someone still thinking in black-and-white ways that will lead you to need to have me, in this case, be one way or its opposite and not the mixture of this and that, that I actually am. Do you want to know the humanity, imperfect, like yours, that lies with me, on the other side of the screen that you are reading my words on? Or, is the paradox of “both-and” not as straight-foward to you as “either-or”

Many people may find this aspect of me confusing in the broader context of my life as an author, and life coach. In fact, even up until recently I kept trying to keep my “worlds” separate online. I didn’t realize why. I was hiding. I actually was hiding, in some small way, that I have Asperger’s for fear of judgment. For fear that many in the Mental Health world in which I also work online would judge me as not recovered from the mental illness and abuse issues of my past. Well, I boxed myself in. No more. Will some continue to judge me harshly or fail to understand the pardox I speak of, yes. Is that okay with me? Yes. I accept it fully now. I am now ready to be more fully me in total in every aspect of my life. I will share what I have to share. Write about what I write about. Continue to work with my life coaching clients helping them to achieve their goals and wanted change. I will continue to believe in all the gifts and skills I have. Gifts and skills that are strengthened and broadened because I have Asperger’s Syndrome. There’s that paradox again.

The journey of trying to be understood, for me, in my life, continues. The journey of further self-understanding as well, absolutely. However, what I care most about, really, is not being stereotyped by all that Asperger’s Syndrome is defined as. So many of those traits do not describe who I really am. I am compassionate. I do care about other people’s feelings and opinions. I can love very deeply.

That contrasts with the amount of time that I am not expressive of that in inter-personal ways. The amounts of time that I love to spend either in my interests and work or with my dogs out in the yard alone. Alone with them. They get me, they really do. No judgment. No stereotypes. No “social” expectations. Just the joy of each unfolding here-and-now moment.

Simply put, what fills up and motivates most neurotypicals (certainly not all) empties me out. That doesn’t mean I can’t be there, interact, socialize when I choose to – albeit with some inherent lack of “getting it” in the actual interactive moments – but that is just my experience, I compensate for it. Some people understand and others don’t. At the end of the day what matters most to me is that I get me. What needs to matter most to each and every person with Asperger’s is that they “get it” about themselves and know that our differences do not make us “less than”. Our differences aren’t even that much about disability. Having Aspergers is that living paradox of understanding so much, being blessed with amazing intellectual and thinking capacity – a very quick mind – and yet, that not mattering, socially at all.

The more I embrace this paradox and understand that for me some socially awkward feelings are “normal”, the more I can accept who I am and be truly free to be me. After all, most of the time, my social awkwardness is mostly unfolding with me because I have learned, as many aspies do, to map out the “social conventions” of interactive reciprocity and mutuality. What I mean by map out these “neurotypical social conventions” is that I do really feel and care but that I am naturally unlikely to show that in “neurotypical social convention-type ways” and so there is effort there that is purposeful and sometimes forced. However, what I am describing is not about being fake or unreal, it’s about giving to “neurotypicals” what they expect and understand, socially. The best way to explain it would be to compare it to you and I talking. I speak “social” English. You are “socially” French. I know some French, you don’t know any English (you if you are neurotypical don’t get “aspie-speak”). So, I as an aspie try to speak your “social” language to connect with you in what is your wheelhouse – your comfort zone. This means that I have to make an effort that doesn’t come to me naturally. Speaking your “social” French, isn’t my wheelhouse or my comfort zone. Therefore, socializing, even though I can enjoy some of it, it can be fun, it can be very interesting, is something that I have learned to map out. This is also why it is depleting to me and not as natural as my own inner-world of pursuing what is natural to me – my narrow focus of interests.

To Those Who Might Wonder – Does this Contradict My Recovery From BPD?

In a word, no. Has this long been a concern of mine in the work that I do online. Yes. Was this easy to admit in a public way. No. It has taken me years to get here, to this day, to this point. I felt this important to express now for me, personally, in my own personal growth. I also hope that it will help others in some way. I am also tired of hiding. And, hey, this has all been in plain sight so perhaps the hiding has really been only how I have been holding myself back, inside. I don’t know.

I do know that many who have Borderline Personality Disorder, and even many non borderlines, (anyone can really) think in black-and-white ways. So, I have long been concerned that this might somehow contradict an “all-good” perception of me – which really wouldn’t be anymore accurate about me then it is about anyone.

There are also those, who for their own personal reasons, out of their own pain, on both sides of  BPD, that do judge me harshly and share it with me in what are most often anonymous emails or anonymous comments posted to my blogs or YouTube videos. These people are few and far between.

There are then others who think that somehow this trait or that of having Asperger’s Syndrome is just like having Borderline Personality Disorder. That’s just not correct. Are there simularities, I don’t know. It may appear so in the definitions. However, then again, what is lost to that narrow way of thinking is the individuality of how Asperger’s effects me or to the degree to which I “manifest” it.

What I’ve learned is that people will think whatever people want to think. What I have learned is that I have no control over that and that’s fine. What I have also learned is that too many people spend too much time trying to diagnose themselves and/or others when really that needs to be left to mental health professionals in the case of BPD and to those who assess people for Asperger’s Syndrome, which for the record is not a Mental Illness at all.

I did recover from BPD 15 years ago, 1995. Ironically, as life would have it, just as I was consolidating that recovery, in 1997, I found out I had Asperger’s Syndrome. Irony and paradox. I’ve written about this on my website (from 2001 on – so guess i wasn’t really totally hiding right?) and will be posting those articles to this blog as I get to moving them. It felt like I was robbed at that time. To have recovered from BPD and to feel as if I had finally achieved the long-coveted “normal” – it doesn’t exist by the way – cool after all really. But, to have worked so hard to recover from BPD with the idea that I would then be “like everyone else” only to find out I had Asperger’s and then slowly learn what that actually meant and to realize what it had always meant in my life that I had no way of understanding or knowing prior to finding out was not easy to cope with.

I did, however, come to find, over those first few years of learning to cope with Asperger’s after recovering from BPD, that there really is no such thing as “normal” and there really is not an “everyone else”. It’s really all about the journey of self-discovery and being connected to authentic self. From there, I am just who I am as is anyone else.

So in conclusion on this issue, I am a paradox for sure. It is from that rich paradox in my own life that I believe I have been blessed with the ability and desire to help others. It’s just that profoundly-simple.

The Lesson I hope all will take from this

Each and every one of us has the right to be who he or she is. There is not one of us that must be the same as everyone else – again, whoever everyone else really is – do you know? I sure don’t.

Society’s need to have its masses conform doesn’t have to intrude upon each person’s right and need to be individually who they are, differences and all. Each of us has the birthright to be who we authentically are.

A diagnosis of any kind is just that. It is not the sum-total of who any individual is. It is not the single determing factor in what our skills are. It just is not who anyone is. It is just one aspect, one label, one truth about someone to varying degrees too by the way. We can make the best out of anything if we are open to doing so. We can do this when we empower ourselves by valuing more what we know and what people who know us, know about us. We empower ourselves when we stop letting other people’s judgment or lack of understanding define us or hold us back in any way. Unburden yourself of shame that really isn’t even yours. You may just have let someone else dump it on you. Or taken on the shame someone else left you with when it actually belongs to those who judge and those who refuse to tolerate difference. It’s not yours. You can let it go. You really can.

I for one, tired of whatever hiding I was doing, (even though I’ve have had my website about Asperger’s and videos up now since 2005 and articles on another site of mine since 2001) though I was inside myself, hiding to some degree, it feels so freeing to just open up to this paradox and actually just write about it and put it out there. Whatever comes as a result comes. Whatever others think they think. I know my own truth. I honour it. I tell the truth. I share what I have to share from all that has made me who I am today, from all that has and that continues to teach me on my own personal journey of enlightenment and personal growth. Change in many areas of my life and compensation and coping other areas.

And what a great teacher Asperger’s has been and continues to be in my life. As was Borderline Personality Disorder, when I had it, a teacher in my life when I let it be. I would not be on the journey that I am on in my life now if not for Asperger’s, having had BPD and recovered, if not for having been sexually abused and recovered. Yes, you see, I, like you, have been wounded. Most everyone experiences some woundedness. I like you, am not at all perfect, thank God! I hope that I embody and share the wisdom of many a wounded-healer. All that I do and share comes from my heart to you.

Know this, you are worthy. I am worthy. We are all worthy, whether you have Asperger’s Syndrome or Borderline Personality Disorder, (or something else) or not, and apply it honestly and openly in and to your life in full appreciation of what is a living breathing paradox within you.

Our challenges and our pain are sacred. They seek to show us the way to heal – ways to continue to grow. We can heal even that which we cannot change. In the case of Asperger’s I can’t fix it. (Wouldn’t want to fix it by the way) I can’t recover from it like I did BPD and sexual abuse. However, I can continue to change, learn, and grow in spite of it and often because of it. I can value the contribution that Asperger’s makes to the sum total of who I am.

© A.J. Mahari, March 5, 2010 – All rights reserved.

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The Pardox of Social Impairment and Profound Social Disconnectedness

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.   


A.J.’s March 2010 – Aspie Confession – Personal Update – CLICK HERE to read it.


 

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.   


A.J.’s March 2010 – Aspie Confession – Personal Update – CLICK HERE to read it.


 

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.   


A.J.’s March 2010 – Aspie Confession – Personal Update – CLICK HERE to read it.


 

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.   

© A.J. Mahari February 2005    


   

•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)   


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AS - Executive Dysfunction

Executive Dysfuntion is, in my opinion and experience, a different way of functioning.