Archive for the ‘Asperger’s In Adulthood’ Category

Asperger’s Syndrome is a journey within the over-all journey of life. For those of us diagnosed as adults the journey may have a few added challenges to it. Life is a journey, not a destination. Within this journey there are as many paths that lead to connecting points, junctures of mutual understanding, as there are people living lives.

This applies whether you have Asperger’s Syndrome or whether you are a neurotypcial (NT). So, you see, we do have something in common after all.

There are many different paths and individual differences among those diagnosed with Asperger’s as well. I believe that along with these individual and personal differences are interwoven the many distinctive ways that AS manifests or is evident in males and females.

Just as there are a plethora of differences between those of us with Asperger’s and those who are NT, there are at least that many differences between each one of us with AS. While we share many traits in common and are thusly identified and diagnosed as having AS this does not make us anymore all the same then all NT’s are all the same just because they are neurotypical.

There are so many paths. There are paths that we choose to take, in life, and there are some paths that are chosen for us. I see having Asperger’s Syndrome as a path that was chosen for me. It is a reality that has taken much but that has also given much and promises to give much more to me in the future. A road or path less traveled apparently. It is a path that encompasses a journey very far from ordinary. Having AS presents challenges that highlight and only serve to strengthen my most inquisitive resolve. Difficult to explain. Complicated to live with and process. Interesting to call upon in all the social/relational situations in which I am impacted the most by it.

I have been told by professionals that AS is actually the source of a lot of my strength and that as I continually seek to profoundly understand myself and how to relate to the NT world better there are ways that I can take this path and have it be an enhancing experience. I am just beginning to tap into this now as my self-acceptance continues to grow. This is a newly formed realization and belief of mine now based upon enough NT input combined with my own AS understanding. This is a testament, for me, to the reality that there are so many paths. I think ever since I was diagnosed I had a mindset that there was only one path or one way and that was the NT way. I had believed that any other way was less than, flawed, dsyfunctional, and abnormal.

It is so freeing to be opening much wider to seeing my path and journey in life as valid in and of itself. I am able to do this now because I can esteem myself for who I am the way that I am. I no longer feel like I have to apologize or make excuses for who I am or how I am. I don’t feel or believe that I am in any way less than because I am not NT.

Finally, the soothingly-sustaining entrance opening up paths not realized in my previously tormented and pent-up existence.

I have also been told by professionals that I am “very high functioning”. Okay, well, I am still trying to figure out if this is a good thing or a bad thing. Truthfully, I realize there are many blessings in being high functioning. It is my experience that there are also considerable challenges associated with this reality, this path, this way of being AS in an NT world. It is not without heart-wrenching pain. The pain of knowing one is other, outside, different, and being profoundly aware of all the times in the social/relational NT context I simply don’t get it. In the past it has been disgustingly devastating to me over and over again that no amount of applied intellectual prowess on my part has been able to ameliorate what I refer to as asperger lostness.

It seems clear right now though that I stand on the precarious precipice of evolving edgy contradiction – correlating my high functioning AS path with the indefatigable paths of the NT world of existence, connection, and communication. I feel compelled to continue to push my limits.

Through this ardent approach to the challenging of my limits I have found that there are a myriad of archetypal paths to be discovered and synthesized as I now consciously travel this barren wasteland, this seeming vacuum of void, this largely collectively unmapped adaptation of paradoxical dualistic survival by creating my own algorithms.

The algorithms that are relevant to my enterprisingly energetic exposure to all that is non-aspie-like are step-by-step problem-solving procedures that I am continually processing and mapping out to assist me in developing a stronger sense of the lay of the land on planet NT. Specifically the lay of the social/relating land.

In my qualitative quest I am now buoyed by my new understanding, and more importantly, my new acceptance of the fact that I, being on the autistic spectrum and having AS, need to acquire my knowledge base and working understanding of socializing and relating cognitively. I am not able to acquire it or understand it through observation, or the trial and error that NT’s learn social skills by. What a pivotal piece of the over-all ever-unfolding puzzle this is for me. It seems and feels strange and yet it is a huge relief to finally get this.

Clearly, there are so many paths each of us can choose to travel that will facilitate our connecting and communicating capacity and capability.

© A.J. Mahari, March 1, 2005 – All rights reserved.

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As a woman diagnosed with Asperger’s Syndrome in adulthood, perhaps I am still finding my way in some respects. I don’t know. However, this aspie is not quite getting social networking. I wonder, is it just me? I’d love to hear from other aspies about what they get or don’t get about social networking and social networking sites. What do you like about social networking and what don’t you like and why? Could it be that the word social, even from behind a computer screen, still packs a punch that leads to similar confusion online as it can so easily, socially, in “real life”? There’s something about being in my own world behind my computer screen that leaves me not so enthused about too much interaction what seems often intrusive interaction. Interaction that the purpose is at times not very clear.

The explosion of social networking sites like Facebook and others – and I’m not talking about dating-type sites – that’s a whole other thing – has brought with it the idea that the internet experience should be interactive. I wonder why. I truly do. I have been told by NT friends and others on the internet as well what is so wonderful about all of this interaction online. I don’t think I get it. I mean I blog, okay, but I have never been one to blog to get comments or to blog and wait for comments. Not that comments aren’t welcome, they are. It’s just that for me blogging is about saying what I have to say – period. It’s about sharing what I have to share. It isn’t that interactive for me. Ironically most of my blogs are not crammed with comments. I don’t know why.

Social networking sites and even twitter – in terms of personal tweets – leaves me scratching my head. I have thoughts about it, I observe it, but I really must be missing something. I got on Facebook the other day for the first time in months. I noticed in the feed that many of my “Facebook Friends” like apps for sure. They are starting zoos and doing something or other in some place called “Yoville” or something like that. Honestly, when I see these messages I’m like, okay, whatever that’s about. I mean I understand what apps are but the devotion of the masses – nope – that I don’t get? Anyone else? I wonder if my not getting it is just an Asperger thing or if it has more to do with the fact that perhaps many others, even NT’s don’t get it?

What do I mean by not “getting it”? Well, technically, that’s not the problem. I can interface with the actual technology. It’s more the logical purpose part that seems to be missing. I mean that I don’t see the reason or purpose to be ‘apping’ as a means of what appears to me on my screen to indicate some combination between some kind of “gaming” and perhaps something that is socially pleasing? I don’t know. Do you?

What really is puzzling to me in some way is the socialization aspect of social media. From an aspie point of view it seems without purpose to a large extent. However, it is likely not thought of as such by NT’s. I have a very busy and active mind. I am not usually lost for words. Even socially in my life, I keep pushing my limits, and I’m doing okay. The things is though, when I go to Facebook or even Twitter, and I see that little box looking back at me that says, “what’s on your mind?” on the screen, my mind goes totally blank. Unless I am posting to my Twitter or Facebook Pages (re coaching, self help, education, writing etc.) I can’t think of a darn thing to say. I mean why would I want to tell a couple of hundred or more people that I just ate a piece of toast or something? Why would they want or need to know that? Why do people want to know such personal details about or from others. That rat-a-tat-tat of social-chit-chat leaves me with an uncommon stilling of my thoughts – thoughts that suddenly do not seem relevant, social enough, or interactively-applicable. Thoughts that flourish in and from another dimension, world, or planet, as I experience them in the context of all that I read that others enjoy sharing with each other.

I understand that to some degree social networking for business or web endeavours has merit. I must admit, even that I do very little of. Am I really missing something? Beyond even that however, I the more I get messages from people, from networking sites and apps and stuff everywhere I turn on my computer online, the more I absolutely don’t get it. So, what am I missing exactly? Is this app-networking like a real-life social situation wherein people join in some activity for the heck of it because it’s what everyone is doing? Because it’s the “in thing” – the thing to do?

Okay, I’ll stop guessing. I wonder how many others with Asperger’s Syndrome find themselves puzzled by all this social network app and seemingly endless communication? Is it a world onto itself? This aspie is resisting it becoming a part of my world as hard as I can. I really am. Intellectually I get it but socially or inter-personally, I have to admit I do not get the value or the reason or the purpose.

I long for the good ole online days where I could just write on my sites or blog or what have you and receive email. That was simple. It’s purpose rarely complicated.

© A.J. Mahari, November 30, 2009 – All rights reserved.

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Adults with Asperger’s Syndrome often struggle with a profound social isolation. Some feel it more than others. For some it is managed but for others it leads to despair and for still others it could factor into feeling like one wants to commit suicide.

If you have Asperger’s, have you ever felt this way? I heard recently from someone with Asperger’s Syndrome who wants to remain anonymous but who asked me to post something they shared with me on this blog.

The person who sent me this email is a 44 year old woman who says she just is at a point of such emotional pain – an emotional pain she described to me as seeming not only endless in terms of her social isolation but an emotional pain that she realized recently she has always felt and struggled with.

This 44 year old woman asked that I just call her E. E and I had a long conversation about the reality and nature of social isolation in Asperger’s Syndrome. I know myself, it’s an isolation that isn’t always felt as isolation as such but it can bring about many different feelings. I think that for many with Asperger’s Syndrome issues within the social realm of life cause varying degrees of emotional pain and bouts of despair and/or loneliness that need to be coped with. They can often come and go. More and more in my life they seem to come rather than go though.

“I am not a person who thought that I would ever want to take my own life yet I find myself feeling this way a lot lately. I don’t think I want to take my life. I know that sometimes there is just such a deep pain that I have absolutely no idea what to do with that it pushes me into feeling total despair.

I watch people socialize, as if it was a sport or something – a sport I can’t play, don’t get, and that makes no sense to me. A sport that I sure don’t have the rules to or for. Whatever it is that people are sharing seems important to them. I don’t get it. I really just don’t get it. It is foreign to me. But then I look at my own life and I don’t have any friends. I don’t have any family. I am not connected to anyone, place, or even thing. Sometimes that matters and sometimes it doesn’t. It’s hard to articulate.

All I really know about these feelings of despair is that they come out of feeling like I don’t belong anywhere. I don’t feel like anyone cares about me. I don’t know anyone. And to be honest, at least a lot of the time, I don’t know that I really care about others – not the way it seems you are actually supposed to, if that makes any sense?

I’m writing to you A.J. in the hopes that you can talk to me because you have Asperger’s Syndrome and because you are a life coach. I don’t know who else to even try to explain this to. I don’t want to put my feelings on to you but I figure you must at least understand what I am talking about at some level.

Do others with Asperger’s Syndrome, if they are really honest with themselves, ever also struggle with this painful place that can rise up out of nowhere and leave you feeling that you just don’t belong anywhere? Do others feel as invisible, weird, and unimportant as I do? Even sometimes? Are there others out there like me who have no friends and no family and just feel like society sees them as worthless as a result?

I really feel like I want to just quit on life. I have no plan or anything right now but when I get to this place where I hurt so bad, I cry, the tears juts pour down my face. And I know that there isn’t anyone to help me with this. I know that this cannot be changed. I have Asperger’s and what that mainly means, among other things, is that I am lost socially. I stick out somehow. I have been bullied all my life. I am a freak. People see that I am different. I don’t even understand how they figure that out when they don’t even know me. I feel socially helpless and so clueless – just totally lost and that means painful despair for me”

If you have Asperger’s Syndrome and you are reading this and relate, I’d sure welcome your comments so that E can get some feedback other than the feedback I gave to her. I wonder if we don’t all know this place of despair when it comes to the reality of that intersection between Asperger’s and social struggles to varying degrees?

I hope that some readers will share their feelings and/or experience about social struggles and/or being bullied or teased and having Asperger’s and if that leads to feeling so frustrated it ends up going all the way to feelings of despair and/or hopelessness.

I have known 3 people with Asperger’s Syndrome who did take their own lives. Do we talk enough about Asperger’s Syndrome and suicide?

I must say that I strongly identified with most of the despair that they felt, at one point or other in my life. I myself sometimes do feel a significant amount of pain at the difference that I know I own when it comes to social “stuff” because I have Asperger’s. Not that that means the same thing every day or in every single social situation.

I also wonder if there aren’t aspects of socialization, whether understood, cared about, desired, or wanted at all, that still somehow end up effecting us in ways that leaves us feeling less than in the face of what is often a glaring difference. I must admit that there are times when I realize later how unaware of my own glaring difference I can be. And when the awareness arises later I can’t deny that it can be extremely painful. There is something very cyclical about this that continues to unfold in my own social experience, at times, that I may somewhat intellectually understand or have some insight about but that still, in the actual unfolding moments of, I remain mind-blind to.

Does the social isolation of Asperger’s ever push you to despair? If so, what do you do when you reach that place? What do you feel?

If you don’t want to share a comment here on the blog, but would like to discuss this, please feel free to email me at aspergeradults@yahoo.ca

© A.J. Mahari, May 8, 2009 – All rights reserved.

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Many who have Asperger's Syndrome are either described by others or describe themselves as living in another world. What does that mean? Is that true? What is it about having Asperger's Syndrome that leaves us, at least part of the time living in another world?

In my experience I get this "other world" feeling or have this "other world living" experience primarily within the social context of what it seems to mean, to the average neuro-typical, to be "in" the world or connected to the world out there. The world out there meaning the social "world" out there.

I really do not have a problem or issue at core with the awareness that I do often experience living in "another world". It is my inner world. It is the world of my narrow focuses (2 or 3 of them) of interest. It is a world that makes most sense to me. It is a world that holds within it the experience of my purpose, and who knows maybe even "the" purpose for my having Asperger's in the first place.

I think the problem, or the rub, if you will, for many with Asperger's about this living largely in another world comes from the reality that any world other than the neuro-typical "social" sphere such as it is, is somehow a less than way to be or place to be or both.

I think it is important to realize if you have Asperger's Syndrome (AS) that living in another world is part of who you are. It is part of how you are as well. It is part of your way of experiencing life. That doesn't make it less than the neuro-typical way of experiencing or living life – just different.

Different needs to be dissociated from meaning less than. What we do not understand about each other and each other's "worlds" needs to be accepted and validated and not judged.

Living in another world, my aspie world, doesn't mean that I do not have any connection to the "outside world" or to the neuro-typical world. I do. There are many ways and times that I have this connection. It is not a connection that I need per se. It is not a connection that fills me up by any means. It actually empties me out.

I do, however, continue to be most puzzled at the neuro-typical social world and all that entails. Do I connect to that some times? Yes. Do I always get how? No. Do I feel lost in that connection often, socially, yes. Does it matter anymore? No, not to me, not really. How come it doesn't?

Simply because I realize the importance of letting go of ever thinking that I will ever get that neuro-typical social world. I know I won't. So many times I have tried. So many times I thought I did get it, for a few minutes. So many times I thought I was in an experience of it only to come to find that, no, actually, it was its own version of hit and miss. That's okay. It is what is. And actually each and every time I experience the awkward feeling meeting of my aspie world and the neuro-typical social world I think that I do gain more insight and awareness into the differences – the ways in which I am different.

Does that insight and awareness mean anything in the actual unfolding of relating or experiencing neuro-typical social world? Nope. Intellectually, yes. In the unfolding of the relational dynamic, each and every time, no, not really.

I can map out more each time I gain more awareness but the truth is I make some of the same – what neuro-typicals may well think of as "mistakes" each and every time I leave aspie world to connect with their social reality in the not-so-effective ways that I actually do that.

There is a truth, in fact, though about living in another world, living in my aspie world and that is that even when it seems I can unstep it or escape it - it is a painful and often times frustrating type of desired (at times) illusion.

The trick is to first accept living in another world. Secondly, it is important to not allow yourself to feel shame or wrong or less than when you realize later or it is pointed out to you later how you didn't quite get to where you had hoped you had gotten to, socially.

It is what it is. Its meaning is only imposing if we let it be. We don't have to engage the idea (or what can be painful feelings) that we are less than because we aren't the "norm" or the average social majority.

Living in another world is just a part of having Asperger's Syndrome. I as someone with Asperger's Syndrome don't value or need or even really want the same type of socialization that most neuro-typicals seem to want, need, and thrive with. I thrive in different ways.

Have you ever stopped to really think about how many different worlds there really are within our one over-all world? There are likely more than you've ever even thought about. We are divided and sub-divided many times over by what we have in common and more often than not by all that we do not have in common.

It is and will be okay the minute you just accept that for what it is. Accept it. Celebrate who you are. Let go of the idea or concept that we all have to be the same. We aren't and we don't. No one is right and no one is wrong. That's the true beauty of difference.

© A.J. Mahari, May 3, 2009 – All rights reserved.

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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.

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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.

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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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

More adults are being diagnosed with Asperger’s Syndrome. More adults are finding out they have Asperger’s in some part likely due to the explosion of information about it on the internet. For some adults, however, they are getting diagnosed with AS after they have a child who gets diagnosed with AS.

An issue that comes up over and over for many adults is why should I bother to seek a diagnosis at my age?

It’s a good and fair question to which there isn’t really any one correct answer or globally compelling reason to seek an official diagnosis.

There are many adults who know that they have Asperger’s Syndrome(AS) inherently after reading information on line or in a book or hearing about the experiences of someone else with Asperger’s. Many do not need or ever seek an official diagnosis.

There is a growing movement within the on-line AS community that supports self-diagnosis based upon peer acknowledgment or validation. This peer acknowledgment and/or validation takes place when an adult who believe they have AS talks (emails, chats) with others who have AS and the commonality of experience becomes irrefutably obvious.

I have experienced both, actually. I have experienced being told I didn’t have Asperger’s Syndrome, then an actual diagnosis, and then further to this I have experienced more peer validation from taking to other adult Aspies who mirrored so much of my life experience and how I have felt through it and as the result of it. Should one way of knowing that I have AS be more important than the other? I’m not so sure.

I believe that many people these days are coming to understand many things about themselves via the internet as well as books. However, online one can do much more than just read information. There are email lists, message boards, and places to actually chat that facilitate the coming together of Aspies who might not otherwise ever cross each other’s paths and learn from one another.

If you can seek a diagnosis because you have coverage for the assessment or you can afford to, then of course, it makes perfect sense to do so. If, however, you can’t access services either due to lack of insurance coverage or trained professionals in your area, I believe that what you know about yourself is more often accurate than not.

The reality of seeking out a professional assessment and diagnosis, for women with Asperger’s Syndrome, is even more complicated and difficult than that of men. Most of the diagnostic criteria have been built upon clinician’s experience of making diagnoses primarily of males. Women with Asperger’s do not necessarily present in the same ways that most men do. It is not uncommon that women are misdiagnosed and sent way more often than there male counterparts into the Mental Health System. Mental Health Systems are not designed whatsoever to facilitate the kind of support someone with AS requires.

Coming to the knowledge that one has AS or being diagnosed with it officially in adulthood does present different challenges than those who find out in their childhoods have to face.

Children these days are benefiting from more and more intervention to teach them how to strengthen certain areas where some skills are lacking. They are being “trained” in how to think and behave like Neuro-Typicals. Some people believe this is a positive thing. I’m sure in some ways it can have positive benefits. However, there are many who wonder about the effectiveness of this approach and also feel that by trying to change so much about a youngster with AS there is not the acceptance level for those who are on the autistic spectrum that there needs to be and should be.

There are definitely challenges to being an adult Aspie. Some can be painful or frustrating and isolating for sure. However, while I might wish there were a few more skills I was taught as a child to manage relating, for example, when I was younger, there is a lot about me that I would feel very sad about having had changed. A lot of who I am has been shaped and molded to some degree by the fact that I have AS. Some of that is not as positive as the rest but I strongly believe that the more I find my way in life, my way, the better off I am.

I am glad that I was diagnosed. I am glad that I know and understand and continue to learn more about what having Asperger’s means in my life and in my relating to the world. Knowing this has increased my ability to love myself and accept myself for who I am and to stop comparing myself endlessly and unfavourably to others.

To this end then, knowing that one has AS is useful information and can be very important in terms of helping an adult with AS learn to make necessary adjustments to cope with the rest of the world and to relate to it in ways that make a little more sense to it.

So, seeking a diagnosis regardless of age for any adult is likely worth it. However, there is almost equal value in knowing what you know about yourself. Through sharing your experiences and difficulties with others on line you can truly learn to assess for yourself if you fit the AS profile or not. If you are a female, however, please look for other women with AS to talk to and read up on how AS can look and be different for females.

Knowledge is power and this applies to understanding ourselves better. If you can get formally diagnosed it’s a good idea. Knowing that you have AS and learning to understand that and the way that it impacts your relating, relationships, and overall functioning and way of relating to the world in general is a very valuable thing that can only add to your self-acceptance and self-understanding in time, in ways that will enable you to find more peace and contentment in life.

© Ms. A.J. Mahari 2004 – addition February 2009 – all rights reserved.

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Welcome to Asperger’s Syndrome – A Different Ability. I am a woman who was diagnosed at the age of 40 with Asperger’s Syndrome. I think it is important to talk about this. It is important for me to do my part in contributing to more understanding of Asperger’s Syndrome, generally, but specifically in those diagnosed in adulthood and also with a focus on the experience of women with AS.

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