Almost every definition I’ve ever read about Asperger’s Syndrome lists among the traits and/or characteristics attributed to those with it as not being able to feel empathy for others – as not having empathy for others. I have Asperger’s Syndrome. I have tremendous capacity for empathy for others. I have continued to increase my ability to express that empathy. Do Aspies really lack empathy or is it felt, experienced, and expressed differently? Perhaps in ways that neurotypicals (NT’s) do not recognize as empathy or do not experience as being the way they expect to be given empathy.

As I’ve likely written about in other contexts related to Asperger’s Syndrome, it seems reasonable to say that there are many differences in those who have Asperger’s Syndrome (AS). Men and women seem to have differing ability and context as well as understanding when it comes to something like empathy and compassion as well. (Attwood) There is still a difference not only in the way boys and girls are socialized, what those social norms contain, but also in what society expects from boys versus girls. Attwood, in his book,  ”The Complete Guide To Asperger’s Syndrome” talks about this and concludes that females find ways to learn to express and to care-give in ways that perhaps many aspie males don’t.

In my own experience with empathy, as an adult with AS, I know that I feel tremendous empathy for others. That can be someone I am talking to, sitting in a room with, or someone I see on the evening news who has suffered a tragic loss. There is also a very profound sense of connectedness to humanity in its macrocosm that means I experience a lot of empathy and compassion for a lot of world events and things that I see on the news and so forth that aren’t a part of my own life.

A lot of this empathy that I have and feel that is palpable within me there isn’t maybe as much expression of it at times. It depends if I am coaching with someone, or writing. If I am just in my own world, doing my own thing, in the splendor and wonder of my narrow focuses of interest (which are in themselves paradoxically vast) then there is much more that I feel that others can’t know – that isn’t measurable.

The way that Asperger’s Syndrome is defined, like many other pervasive developmental disorders, or even mental illnesses pathologizes and categorizes differences in what are highly divisive and negative ways. There is little if any consideration given to the different ability of many with Asperger’s in and through which things are felt, experienced, processed, and expressed differently. Not being the same as the feelings, experiences, processing, and expression of neurotypicals (NT’s) the presumbed NT’s who set out the defining criteria of Asperger’s Syndrome fail to give consideration to different ability. What is different about those with AS in the minds of those defining it and those who continue to forward that narrow definition of it, despite endless individual manifestations and expressions of AS from all the people who have it, is that there is a tremendous lack of tolerance for difference.

It’s as if there is some segement of society, “professionals” (?) that are charged with defining the ever-illusive “normal”. It’s flawed  logic to begin with. It leaves no room for each to march to the beat of his or her own drummer, to be introverted versus extroverted without scrutiny and/or without penalty of judgment and being patholigzed.

I don’t happen to think there is anything particularly horribly wrong with my brain as someone with Asperger’s Syndrome. Again, the differences between aspie brains and NT brains, see the NT’s pathologize the aspie brains as “dysfunctional”. Why not just different? For all that people with Asperger’s have contributed to this world through the unique genius that is a bonus to our differences, geez, I don’t see that being categorized as negatively as the ways in which we “don’t get NT social”. Who needs it? I mean I straddle that line. I have pushed myself way far to “get it”. However, “getting it” to some extent, and being able to connect socially, feel and express empathy and receive it doesn’t mean that I want or need to be in that “space” that often. I just don’t. I do find myself in that space often in terms of the work I do, writing I do, and knowing what others need from me at times. The rest of the time, time I can have for me, in my splendid aspie world, is time cherised in that world. That is not a statement about egocentrism or being unaware. Again, it’s difference.

The egocentrism of my Asperger’s is something that I am now very aware of. There are ways around it. Do they feel natural – no. Will they ever – I doubt it. Does it matter to me – not any more.

There are also many feelings, such as love, empathy, compassion, and so forth, that are compromised to varying degrees with individuals with Asperger’s Syndrome. This does mean they can’t continue to learn ways to increase understanding  these emotions and their expression. Within the social impairment (so called – I’d say again, different ability) of Asperger’s Syndrome in terms of social relating does feeling or expressing empathy become more challenging or difficult for many with AS, yes. This has to do with the different ways that we process information. It has to do with the NT social context that most with AS, even when we understand it to varying degrees, do not find it to be the way that we engage, the way that we would relate that would be first-nature to us.

Many people with Asperger’s Syndrome have a capacity for empathy. Some more so than others. Some maybe not so much. Again, Asperger’s Syndrome is not the same for each and every person who has it. However, the blanket statement in the pathologizing DSM-IV definition of Asperger’s Syndrome (which by the way is not even slated to exist as such in the up-coming DSM-V professionals now preferring it just be lumped in with autism so that everyone can get even more confused) that people with Asperger’s lack empathy is not all that accurate. It is a statement without explanation. A statemment, black-and-white as it is, that doesn’t take into account each aspie’s individuality, and the reality that people can feel more than you can know. This is especially true when much that can be felt by those with Asperger’s Syndrome isn’t met with the same need for expression, socially or otherwise, often as it is for those who are neurotypical.

This begs the question how professionals can even really accurately assess what someone with Asperger’s feels or has the capacity to feel. How can you know if I lack empathy just because perhaps I didn’t express something that was wanted, coveted, expected or that NT’s define as a “social norm”?

You really can’t, can you?

Should we as people with Asperger’s Syndrome, make up some book and pathologize NT’s who have a greater need and/or desire to relate many things, empathy being perhaps one of those feelings, to others more often than we do because to us that is not “normal” or necessary?

I believe that most aspies do feel empathy. I also believe that they want to experience empathy from others but that often both are lost in terms of expression and reception to the different ways in which we think, process information and to the different degrees to which we feel the need to actually “socialize”.

That does not a lack of empathy make. That makes for difference. More difference that is not understood, not tolerated and that is pathologized by the “powers that be” who decide how it is that we are all “supposed” to relate to one another.

Small box that, don’t you think?

© A.J. Mahari, April 13, 2010 – All rights reserved.

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The intricate labyrinth of this paradox exists within the assumption that a social impairment in and of itself, however that is defined and experienced in each individual (AS) life is tantamount to social disconnectedness   

Gregory B. Yates, in his writing, “A Topological Theory of Autism,” – the website – www.autismtheory.org/topotheory.html explains that the three founders of “autism”, Eugen Bleuler, Leo Kanner, and Hans Asperger, “clearly saw other features of autism as secondary to social disconnectedness.” and emphasizes that this disconnectedness “…is the central, eponymous feature of autism it is the primary feature…”– “it is social disconnectedness that most defines autism…”   

The degree to which there are differences, generally, between autism and Asperger’s Syndrome (AS), more specifically, in terms of this social disconnectedness varies greatly with each individual. It has been my experience that the manifestation of this social impairment and social disconnectedness also varies greatly between those with more classic forms of autism as opposed to those with Asperger’s Syndrome (AS). Even within those with AS the extent to which this paradoxical synergetic syndrome is present depends upon many individual factors including age of diagnosis, intervention, support, counselling and general educational intervention.   

I experience this social disconnectedness, as an adult with Asperger’s Syndrome (AS), in ways that I imagine are more difficult for me and others like me than they may be for those with more classic autism. It is the awareness that one has with AS that often brings with it a more painful lack of connection. Many, like myself, with AS, to varying degrees, have strong desires to try to be as social as we can. This is, however, coalesced with what is an equally strong aversion to being social.   

This paradox of simultaneously desiring and feeling aversion to social connectedness is born out of a lifetime of difficult and painful experiences in the social realm coupled with a lack of understanding and difficulty in truly being able to feel a sense of joining in what others are experiencing as a shared experience.   

I am keenly aware, in the social realm, that while I have learned to do many things that one is supposed to do from all accounts and appearances I do not experience them in the same way that neuro-typicals (NTs) do. There is still this feeling of not totally understanding the feeling experience of the shared social experience. This reality is accompanied by the anxiety and the stress (overload to my system) that much of this activity produces within me. To state it outright and forthrightly, I do not derive joy from anything social.   

My experience of joy is very much a by myself internalized proposition. Knowing this can be, at times, a source of frustration and pain. Even when I am social I am not really totally there. It’s difficult to explain this but as Yates explains, “Autistic people live like Tantalus*, with the fluent social interaction of others suspended before their eyes, out of reach.” I can relate to this. To try to actually join in and feel a shared experience socially is like reaching for forbidden fruit that moves ever so slightly back every time I reach up and forward toward it. I have been in many a social situation where I do just end up observing because the social interaction of others is suspended out there before me and for me is out of reach in terms of experiencing it the way that others appear to be and report experiencing shared meaningful times that fill them up. Trying to socialize, which I don’t mind in small doses, despite the pain of it all, for me is so stressful most of the time that unlike my NT friends empties me out leaving me just wanting to retreat back into my own world.   

The fact that most NT’s describe socializing as being a “filling up” experience that adds something to them and I know that it is the opposite for me, I don’t see this as needing to be defined as anything else aside from a profound difference after its recognition.   

Yates continues with the assertion that, “Social disconnectedness is the horse of autism: Secondary features are baggage in its cart.”   

Not everything about this social disconnectedness is experienced as baggage. That said, I think it would be highly negating if I were to say that this disconnectedness doesn’t in fact leave an adult with AS with some baggage. It does.   

The most difficult aspect of this baggage, which I’m sure varies with each adult with AS, though having, no doubt, some common themes, is that we are left to fend for ourselves with it. There are (with rare exceptions) no services for adults with Asperger’s Syndrome.   

In my own experience, the mental health issues and co-morbid issues that can exist with AS and its incumbent or subsequent baggage, are not effectively being dealt with by traditional Mental Health delivery systems. While there are some therapists who will assist adults with AS they are not accessible to those without the funds and even then they are rare as most, if not all resources are currently focused on children with autism and/or Asperger’s Syndrome.   

Today’s children are going to be tomorrow’s adults. The baggage that they will encounter as adults will still be sitting here, as is mine and that of other adults with AS. I continue to not understand the lack of services for adults and for those who are transitioning from adolescents to adulthood with all its more complicated issues.   

I must stress here too that not all that AS brings to my life is about baggage. In the arena of social disconnectedness and trying to navigate the world of social beings however, yes, I have some baggage that I am continually aware of, working through, and trying to come to terms with. In this area, this baggage does impinge upon my self-acceptance, still, though I’m getting through that more now too. This is the reality of a paradox that adults with AS must not only live with but wrestle with in order to not be left feeling less than. This is why I stress that we are differently abled as opposed to the common societal stereotypical assessment that we are just disabled   

Yates also asserts, “While some secondary features of autism are unpleasant, in a social world one autistic trait is truly devastating. That is autism’s defining characteristic itself — social disconnectedness.   

I have found this trait quite devastating. While I continue to make progress in terms of what I have learned about mapping my social efforts I continue to find them often as painful as they are anything else. I am still in the process of dealing with this fact. The fact that I have to live with a high degree of social disconnectedness that I have enough insight about to feel saddened by at times. It is here, I have learned, that my self-acceptance depends upon my ability to continue to learn and grow in my ability to use compensatory strategies to meet my needs in the adult arena of relating.   

Yates states that, “Autistic people vary in their desire for social interaction. However, even those who do not desire social contact can be devastated by its lack, for thriving in human society depends on social ability.”   

I agree totally with Yates here. I have known other adults with Asperger’s Syndrome. I’ve seen vast differences between them and myself in many respects. I’ve also noticed that there are numerous and vast differences between men and women with Asperger’s as well. (More on this in an up-coming article)   

I have been devastated by “its lack”. The lack of socialization in my life. By what remains (or certainly feels like) despite my best and most fervent efforts to socialize, relate, and be available in my primary relationship, a feeling of disconnectedness that often brings me back to a familiar pain that like a brick wall sitting between me and the world of social ability, has and continues to affect my thriving in the way in which most people define and value thriving   

All is not lost here however. I am a great believer that even when diagnosed with AS in adulthood, as I was at the age of 40, we can make progress. I have learned a great deal. I continue to learn to compensate and to let those closest to me know what I need in order to be able to build bridges to them and have them build meaningful relational bridges to me.   

I also believe that despite not experiencing a kind of social ability that clearly indicates thriving to our human society, I am thriving and will continue to build upon this thriving in my own way as defined by my own understanding, needs, wants, and my continued dedication to straddle what is at times a very unforgiving philosophical paradox.   

What is defined as social impairment, again, can be construed as disabled or contrastingly as differently abled. One must take to task the notion that we are all supposed to be the same or that we all must have the same values and capacity in the social realm.   

Having Asperger’s and knowing it should be a gateway to understanding not some societally imposed label that implies lack and that sees that lack pathologized.   

It is my hope and my intention the more I come to understand my Asperger reality and the more I write about it that my readers will come to appreciate the differences that manifest in many ways that are the indicators of difference in brain functioning. That NT brain wiring is not superior to the brain wiring of those with Asperger’s and visa versa. This is all about difference and more specifically, acceptance of that difference and allowing each group of people to live as they must and flourish as they will.   

To this end, coming out of this most basic difference in social ability and social connectedness or defined disconnectedness it is my hope that the system and parents of children with AS will stop believing and insisting on trying to normalize the autism/asperger’s out of their children. We are born the way we are for good reason. Let society expand its definition and understanding of worth, and change itself, and stop requiring that those of us on the autistic spectrum change or have to fit the NT mold in order to matter, to be functional, and to be able. We are very gifted and talented in our own ways. Who we are needs to be “good enough”. It needs to be “good enough” firstly to parents, secondly to society and equally to each adult diagnosed and left to fend for themselves, with Asperger’s, in adulthood.   

We need bridges of understanding to and from each other. We do not need to be the same. We are all okay as we are, differences and all.   

© 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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• “Many individuals with Asperger Syndrome exhibit extensive knowledge of a specific interest and therefore are capable of major accomplishments.
• Although Asperger Syndrome can be first detected in childhood, many individuals are not diagnosed until well into adolescence or adulthood.
• The cause of Asperger Syndrome is not yet established, but a leading theory at this time points to genetic causes. Many individuals diagnosed with Asperger Syndrome identify similar traits in their family members.” 

             Source: Aspergers Society of Ontario

You might think well, if Asperger’s Syndrome is genetic and on the autism spectrum and since it is a pervasive developmental disorder that that may mean there’s nothing that can be done to help someone.  For those of us diganosed in adulthood there are even more challenges because any chance for early intervention, counselling, psycho-education, social skills training and so forth has been missed. And, once in adulthood there are very few places one can go for this assistance, if you can find anywhere at all that works with adults.  Most of the resources used in treatment and managing Asperger’s Syndrome (AS) are in place only for those under the age of majority. So, are you just stuck with it? How can you change anything when there isn’t a way to actually get rid of it? Mind you, most aspies I know, and I include myself here, would not want to get “rid of it” even if it was possible to do so.

Not everyone diagnosed with Aspergers is the same. Not everyone diagnosed with Aspergers has all the traits or has certain traits as strongly as the next person. It is important, if you are an adult with AS, to look at what your strengths and weaknesses are. For many with AS common strengths include a high intelligence and strong interest in a least one area of narrow focus. While this narrow focus can have its drawbacks it can also be harnessed as quite a strength in many ways. An obvious and quite common so-called weakness for those with AS is social impairment. However, I have come to realize that the way that is defined is very genernalized. Each one of us needs to examine our own abilities and challenges in this area particularily. I say so-called because to the degree to which one is socially impaired or not can depend quite a bit on your own idea of what that means for you as an individual.

One of the major aspects of self help that can be of great assistance to those with AS is learning more about self-acceptance and respecting differences, to the degree that you understand the ways in which you are different from the average NT. Even if NT’s around you don’t understand or respect your differences its important to not take on the judgment or misconceptions of those who cannot understand what its like to have AS. NT’s are often very confused by a lot of the ways in which we think. Just as those with AS find many of the ways that NT’s think a little other-worldly too. It is equally important to realize that a lot of what we do differently, or the ways in which we may think differently, can be positively framed in realizing your capability to function in and through what is a different ability.

I have come to realize in my own life that having AS doesn’t mean, for me in my life, that I am disabled. I am differently abled. I may have many differences in how I function – known as aspie lack of executive dysfunction – which I have found through my own self help efforts can really be transformed into different ways of functioning. Again, the key is changing the way you think about difference and being the one that is different. What NT’s call dysfunction can be turned into your own undersanding of many different ways that you actually do function – this aspie functionality is just not well understood by NT’s and of course is not the same as NT functioning.

You really can create change in your life like anyone else – like your neurotypical (NT) counterparts. Change for some with Asperger’s means personal growth and evolution in understanding and learning for many. For some it might be more about finding productive and workable compensatory strategies. Social strategies are also important to explore and implement. They can take practice. However, if you learn to be kind to yourself and avoid judging yourself you will find that what you practice and what you apply from self help philosophy can and will be very helpful.

As a life coach I have learned to apply self help strategies in  my work with many clients with Asperger’s Syndrome. I have, of course, also learned to apply much of these same self help strategies in my own life. The first step in ensuring that you can make the most out of the self help you can learn much more about is to have an open mind about how much you can empower yourself to find ways to cope and ways to compensate for what isn’t exactly entirely changeable. Adaptation is a key facet of applying self help to your life journey with Asperger’s Syndrome.

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

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The most central challenge of being an adult with Asperger’s Syndrome is self-acceptance. Closely followed by radically accepting what having AS means in terms of being different from those who don’t have AS – neuro-typicals (NT’s).

It is important to realize that as aspie’s it can seem like there is this NT-everyone else out there, as if all NT’s are alike or as if all NT’s have the same abilities or levels of functions – they aren’t all alike and they don’t all have the same level of function at all.

It can seem like you are marginalized if you have AS, and even moreso for women with AS. The truth about that is just that there are more NT’s than there are those of us with Asperger’s. Having a practical radical acceptance of how that tends to create and for some support their stereotypes can mean giving yourself the gift of not twisting yourself into an upset pretzel at that the reality that you are different from someone who is NT. We have to remember that the differences aren’t all stacked against us. In fact, having Asperger’s does mean having some unique skills and in most cases a very high IQ.

©  A.J. Mahari, February 1, 2010 – All rights reserved.

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Neuro-typicals need to understand that they really cannot truly know what it is like to have Asperger’s Syndrome. That’s a good place to start. Sound too simplistic or obvious? It is an important distinction to keep in mind because you might think you are offering someone with Asperger’s help based upon what you would experience as being helpful.

What most neuro-typicals find helpful or recognize as support is, more often than not, not the same for people with Asperger’s. If you approach the person with AS in your life from your own perspective without consideration of the differences in perspective, experience, and interpretation of those with AS the results will often yield more frustration for both parties involved.

It is also important to not put your own expectations upon your loved one or friend with AS. For many people with AS the help, caring, and/or support of others feels intrusive to them. It can be experienced as being a major stressor. It can lead a person with AS to retreat more inside of him or herself as a reaction to the ways they know they are different. The very things you may be stressing in trying to help may in fact leave the person with Asperger’s feeling judged or criticized because they do not have a common reference point with you from which to share in the reality that you care and are trying to help them. 

As someone with Asperger’s who continues to push all my limits in learning and mapping aspects of life and relating where I have a different ability – commonly referred as “disability” by NT’s, I myself, have experienced others trying to help me at times when there wasn’t any help they could really give me. We didn’t have a shared perspective, understanding, or strong enough commonality in our experience for a meeting of the minds that could prove to be beneficial versus frustrating. I have also experienced people trying to help me over the years in ways that were about trying to change who I am and how I function. That doesn’t anger or bother me but I have learned that I have to point out that what I do and how I do it, just because it is different, doesn’t mean I’m doing something wrong. I’m sure there are easier ways or more organized ways to do many things but they aren’t things that fit the way my mind works – they just don’t jive with how I think and what will work for me.

I’m sure the same could happen in reverse. If i were to try to help out a friend of mine, offering advice let’s say, about something that they do and how they approach it or do it, and gave my NT friend aspie methods of doing things how could I reasonably expect that they would change the way that they think and experience the world to fit my Asperger ways? That would prove frustrating for both me and my friend.

Help and support aren’t the same thing. Support is often met with less stress and anxiety than efforts to help. If you are a neuro-typical and you are thinking about helping the person with AS in your life ask yourself, what your goals are. What are you trying to accomplish and why? Is it for the aspie or more for you? Are you invested, perhaps without realizing it, in having the person with AS in your life be more like a neuro-typical?

This is an example of an unrealistic expectation that will leave you frustrated in trying help and that will leave the person with AS feeling intruded upon and/or stressed out by your efforts to help. Often when you want to help you want to see change from someone else rather than changing the way you approach a person or situation.

Sometimes the best “help” is accepting the person with Asperger’s in your life for who he or she is. NT’s will benefit from education themselves about Asperger’s Syndrome generally. They will also benefit from going one step further in asking the person with AS in their life about him or her specifically because each person with Asperger’s is an individual. We aren’t all the same. We don’t all have every trait or listed manifestation of what Asperger’s is stereotypically described to be and mean.

Differences that aren’t accepted will continue to fuel exhaustion and exasperation. Those feelings are generated in those trying to “help” who are really seeking to change someone into thinking, being, doing, acting like they do – in other words – trying to get someone with Asperger’s to act as if or find a way to be neuro-typical. It just doesn’t work.

©  A.J. Mahari, January 4, 2010 – All rights reserved.

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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”? 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?

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.

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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

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Neuro-Typicals (NTs) often wonder if those with Asperger’s Syndrome really feel love for others. As someone with Asperger’s Syndrome (AS), in my own experience, I think that what is more at issues isn’t so much what someone with AS feels or doesn’t feel but can they communicate what they feel or do not feel in a way that NTs can understand.

Recola, who has an aspie boyfriend and posted in the discussion area of Aspergeradults.ca Forum describing some difficulty encountered with her aspie boyfriend. She described his not being there for her in times of needing emotional support and understanding when she needs space due to her own stresses and/or his not fully understanding her need for space when she feels this way.

She asked this question: “Do Aspies really feel love for others or do they just stay with people who give them a comfort level?” and described that her aspie boyfriend seems to take leave of the relationship when she is depressed and that things seem to switch from him professing his love for her to him saying to her that “You need a helpful loving person, someone who can get you through those tough times that you have. I don’t have the energy for that”.

The first thing I want to make really clear in response to this is that each and every person with Asperger’s Syndrome (AS) has their own individual responses to life, to the stress of relating. Each individual person with Asperger’s has varying degrees of understanding of “other”. Whether or not Recola’s boyfriend can actually understand what her stresses or feelings of depression are like and what she needs and why or not is not clear. He may well not be able to empathize. Some people with AS lack empathy. Some have empathy and can’t express it. Some both have empathy and express it in their own ways.

It is important to remain cognizant of the fact that each and every situation for those who are involved in relationships with those with AS is somewhat individually different. There is no blanket statement to be made that every aspie will do this or that or not be able to do this or that relationally.

Asperger’s Syndrome is indeed a complication to many aspects of relating generally and specifically in interpersonal relationships for most. I believe that those of us with AS can learn to compensate for
that which we don’t understand very well. We can learn how to meet our partner’s needs, or at the very least how not to stress them more when they are facing emotional turmoil or other life challenges.

To the question posed, “Do Aspies really feel love for others or do they just stay with people who give them a comfort level?” forgive me for sounding like a broken record when I say that it is such an individual thing. There is no lumping us all together generally or when It comes to the ability (or perhaps lack thereof) to relate to a significant other. What it sounds like the aspie described by this poster to the discussion area of this topic is struggling with is lack of emotional reciprocity. This may well be because he, like many with AS, has mind blindness, which is described through the “Theory of Mind”

Theory of mind, or mind blindness is an impairment that those with AS must learn to compensate for to one degree or another in order to maintain heathy and functional relationships with those who are Neuro-typical (NT).

Those with AS may lack the ability to be able to consider, understand, and cope with other people’s thoughts and feelings. There may be times when an aspie may have a degree of understanding but not have found a way to communicate that understanding in a way that an NT would readily comprehend.

This reality can lead to difficulties in the areas of trying to comprehend the intentions, motivations, and subsequent actions and feelings of others.

• Inside My Asperger’s Experience
• Asperger’s Syndrome and Adulthood From The Inside Out Ebook

People with AS may also lack understanding of their own emotions and/or the emotions of others. This often manifests as a lack of empathy.

At times any lack of understanding of emotions, one’s own or those of others, can be the result of the time it takes aspies to process information. Sometimes, just allowing the person with AS a little more time will help him or her to identify what they feel or to understand more about what an NT feels.

There are compensatory strategies that can build strength and more understanding to decrease the impact and potential negative effects this impairment. This has been my experience. However, that said, not all aspie’s will be able to make these efforts or even desire to consider making these efforts to learn to bridge the emotional and social gaps between themselves and those who are NT.

To answer the question then, I believe that aspies really do love others in their own way. What that way ends up being, looks like or consists of varies. As an aspie who has stretched and grown in compensatory ways in this area myself I know that in my own case I am not seeking to be in a relationship in the search for some comfort level. Comfort is often elusive and over-shadowed by the anxiety that presents when I am relating to my partner. So to the degree that any aspie seeks to be in relationship to another (and especially an other who is NT) I believe that in most cases this would be from a place of love – love as the aspie understands it which may be quite different and much more limited than an NT understanding and experience of love.

When Recola’s aspie boyfriend says he doesn’t have the energy to cope with her emotional state or needs this may be the product to some degree of mind blindness. It may also have a lot to do with the stress that dealing with emotions causes many with AS.

The bottom line here for Recola, or anyone who is NT in a relationship with someone with AS is that you have to decide what you need. You have to clearly ask yourself what you can and cannot live with.

• Inside My Asperger’s Experience
• Asperger’s Syndrome and Adulthood From The Inside Out Ebook

I do not believe that aspies just stay with people who give them a comfort level because the exposure anxiety and general stress involved in relating are often formidable and for most I believe would be (as in my case) motivated by very real feelings of love. The territory that those with AS have to navigate to express love and to cope with relating is very different from the terrain traveled by those who are NT.

These relationships, between those with AS and NT’s require continued effort on both people’s part to address the challenges that will present themselves and it is crucial to understand that all that a couple seeks to mirror to and for each other within a relationship will be two very distinct reflected images presented in very differing styles of relating, communicating, and emotional expression.

It is therefore very important that assumptions aren’t made “facts”. Each person, and perhaps even more so the NT in the relationship need to clarify and re-clarify things in order to accurately understand the feelings and intentions of his or her partner.

© Ms. A.J. Mahari April 12, 2005 with addition on February 7, 2009 – All rights reserved.

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Jenny McCarthy, a self-professed advocate for her son Evan, who was diagnosed with Autism, and for other children who have been or will be diagnosed with autism, has written a memoir about her experience “Louder Than Words: A Mother’s Journey In Healing Autism“

The main thrust of McCarthy’s memoir, aside from telling the story of a very dedicated mother who has fought hard for her autistic son, centers around what McCarthy terms Evan’s “recovery”.

McCarthy, appearing on The View, Live with Regis and Kelly, Oprah, and Larry King to name the shows I saw her on, in each interview first spoke of Evan as recovered from autism. She would then, later in each interview, sort of back track from the word “recovery” and point out that while Evan does now attend a regular school and interacts much better and so forth, he does still have challenges.

What is the impact, generally, of this on those with Asperger’s Syndrome?

This might be a very difficult thing to assess. However, the specific autistic challenges that McCarthy’s memoir deals directly with the journey that the intervention strategies, treatments, and interventions, of more “classically autistic children” require. While not agreed upon by all professionals totally, there are doctors who support McCarthy’s strategies and results. Though the doctor who was on with her on Larry King was careful to say that results of these treatments vary widely in autistic children and the reasons for that aren’t fully understood. It is agreed, however, that the earlier these alternative treatments are attempted the greater the likelihood of favourable results.

It seems to me that to some significant extent a lot of what is being fought for by McCarthy and others for their autistic children are things that most children with Asperger’s Syndrome don’t ever lose (totally). Things like some eye contact, speech, the ability, (on a wide spectrum that varies in degrees) to be able to relate and be interactive. The question that begs asking here is do those with Asperger’s even require the same intervention? Will they benefit from the same things that McCarthy’s son did?

• Inside My Asperger’s Experience
• Asperger’s Syndrome and Adulthood From The Inside Out Ebook

What is the impact, specifically, of this on those who are adults with Asperger’s?

I know for myself, speaking as an adult with Asperger’s who didn’t find out until I was 40 years old, it personally causes me a little bit of grief. Grief that I didn’t find out I had AS when I was a child. Grief that as a female much of what I was caused difficulty by was even more invisible than it is for most young aspie boys.

Grief that causes me to wonder, briefly, how would my life have been different – or if in fact it would have been different – if in fact it would have been different – if I had a mother who went to bat for me (which I did not have at all) like McCarthy has for her son. Grief just thinking about the what-ifs which is not a place I recommend any adult with AS stay in long. But it is only human to go there at times.

Self-reflection on these feelings and this grief, I think is necessary at times, for greater self-understanding, and in the end, a greater self-acceptance too.

How it impacts me, as someone on the specturm, who has Asperger’s is that I wonder about the quest to normalize autistic children. It’s a catch-22 of sorts. It hits at the question, are we all supposed to be the same? How does this desire and/or quest to make every child “normal” effect the way that we value or fail to value inherent differences? Does it send a message that what is perceived and defined by
many as a disability is a less than way of being. This is an attitude that leads to discrimination and marginalization of inherent worth.

McCarthy’s memoir, “Louder than Words” does tell a compelling story. It does offer hope for a growing number of parents and their autistic children. The statistics now say that 1 in 150 children will be diagnosed with Autism. Those numbers keep rising. Autism, in all its forms, is an epidemic, in North America for sure, and perhaps also in other countries.

As an adult with Aspeger’s Syndrome, however, it feels like a catch-22 of sorts to me – this entire issue of getting the most autism out of a child type of thing. For me being on the autistic spectrum continues very much to be an on-going paradox.

It has its amazing aspects and it has its challenging, frustrating, and still at times, painful and/or emotionally difficult aspects for sure. The question that comes up for me is would I really want to be changed now if that was possible or ever to be possible? I think, in spite of everything, my answer is – no. I have come to value my differences. I have come to find ability from the depths of what are challenges and inherent differences between myself and those who are neuro-typical (NT). In other words I am finally finding peace with being who I am. I am who I am in all that means. Asperger’s is not the some total of who I am but it is an important part of who I am.

I know that the important distinction (perhaps among many others) between Asperger’s and more profound manifestations of autism – or classic autism – has a lot to do with the differences that those of us with Asperger’s have in terms of being verbal, being able to communicate and not being “classically trapped” in a separate totally internal and separate world. However, I will make the point that there are times in my life, even now, when while I might know differently intellectually, there are times when being an aspie, primarily in the social arena, leaves me feeling like I know a little bit about what it might like to be that more classically autistic child. Socialization, is still, at times, and in many ways, for me, not at all like I’ve heard it described by NT’s and it can still cause frustration, pain, and lostness. But, as this is my own personal journey through this life, I take it that there is great purpose, even in that.

I do at the same time very much recognize the battle and the validity and important of this battle for these more “classically autistic children” however. Many of them are reported to seem rather normal until a certain age (or set of circumstances – some believe after vaccinations for example) when suddenly they withdraw inward and they stop communicating, stop making eye contact and more and more are lost inside of themselves in more profound forms of “classic autism”. To be saved from being trapped within I think is huge and important. To be helped to be able to communicate and to interact – to whatever degree – can make a life with autism much more liveable, especially for those around that child who love and want and need to interact with them.

• Inside My Asperger’s Experience
• Asperger’s Syndrome and Adulthood From The Inside Out Ebook

The interesting thing in all of this too, in my opinion, is that much of what McCarthy talks about has having helped her son Evan, the wheat and gluten free diet, and addressing the yeast in his system, for example, along with the other methods used to “rehabilitate” him, referred to still as alternative treatments, do not work the same for all children with autism. Even all the children who are now able to take advantage of what McCarthy did for her son, the results vary widely. I wonder what information, if any, this fact, may well yield that may shed more light on the issue of whether or not what McCarthy’s son and others like him have actually experienced. Is it recovery? Does it have to do with the degree to which they were autistic? Can this be measured? It seems in many ways, for me, to raise more questions than this held out “cure” actually provides.

And another question that crosses my mind is of course related to causation. Can autism really be cured without knowing what causes it? What leaves one child classically or more profoundly autistic and the next with Asperger’s Syndrome, for example? Is it a case of different causes?

Is Jenny McCarthy and her son Evan’s journey revolutionary? Is it more typical than is known? Will it become more typical? Is it too cost prohibitive for way too many families?

And of course, I have to add here again, that there needs to be services and supports put in place for adults no matter where they fall on the autistic spectrum. Not every parent as McCarthy’s fortitude, reserve, or even financial choices. Not all autistic children treated like Evan will have the same outcome. Therefore, it is not just adults with AS that need services and supports because today’s aspie kids and  autistic kids will be tomorrow’s invisible adults on the autistic spectrum for whom service is only a wished-for thing and certainly is not, in reality, tangible in any meaningful way.

© A.J. Mahari October 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.

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