ASD

Adults With Asperger’s and Too Much Empathy

AsvsNTEmpathy

Very unlike the “traits that define” Asperger’s Syndrome – or more recently – as it is lumped in now in the DSM 5 with Autistic Spectrum Disorder – a lack of empathy is just not an accurate trait to list in consideration of diagnosis.

The first issue is the scales and tests to diagnosis Asperger’s in the first place, especially since what is currently available has lacking measuring ability of attributes (feelings) like empathy. Secondly, there are no diagnostic scales or tools to recognize Asperger’s in its many expressions in females. It’s still thought of being mostly a “male” thing.

As an adult with Asperger’s who was diagnosed at the age of 40, but really, coming to that awareness explained so very much of my childhood and life experience that I had never had a way to truly understand before being diagnosed. I know that I do not lack empathy. In fact, I’ve known for longer than I have known I’ve had Asperger’s Syndrome all my life, that I have too much empathy.

Each person with Asperger’s (AS) is an individual. There are differences in how empathy is felt in those with AS compared to Neurotypicals (NT’s). My sense is that NT’s feel it and fairly spontaneously express it. They express it to each other, relatively speaking, in ways that are easily identifiable and expected and therefore they have a common language of empathy.

That’s what I’ve always believed the biggest difference when it comes to this question of empathy and AS vs Neurotypicals and their empathy lies. It doesn’t have anything to do with people with AS not feeling empathy. It has all to do with how or when or to whom that empathy will be expressed, how and when.

People with AS, and I know this from my own experience, process all feelings and information differently than NT’s. That’s not to say all with AS are the same. Just as all who are NT are not the same. However, people with AS do process information and feelings differently from those who are NT. This means that there may be a delay in expressing what is felt or a difficulty in expressing it coupled with an NT expecting to have it expressed to them the same way as other NT’s would express it.

As an adult with Asperger’s I know that it takes time for me to process information. I do that rather rapidly but I still have to run it all inside first before I start to share it. The same is true of emotions. I will run them inside, feel them, and then express them. I can relate to feeling, as others have described (online youtube videos and blogs) too much empathy interpersonally and an even deeper over-whelming empathy in the context of empathy for things that happen to people or in humanity – feeling as equally deeply empathic about the later as the former. Something that many NT’s don’t seem to feel as much.

For example, on 9/11, when we first heard of the attack on the U.S. others I was with reacted, of course, but were pretty focused on phoning their loved ones. Even though we were in Ontario, Canada, we aren’t really that terribly far away from New York, New York. Nobody knew what was going on as that began to unfold. Unlike everyone else I was with who started running to phones to call loved ones with the sense that they needed to get home, pick up kids from school, get together and do what? Be safe? Be safer? I don’t know to this day. Why not?

Because my reaction was one of experiencing a panic attack because I was overwhelmed with the feelings of humanity that day. All humanity, generally, and specifically those suffering directly, even though at this point, I’d still only been told what was going on and had not yet seen anything on television at that point.

It was a deep extreme empathy that was for all of humanity as all of humanity (and the years have born this out) was attacked that day and that day is a day that has changed our world in ways that are not for the better.

I felt so much that I didn’t think about myself at all. I was not at all thinking or feeling the same things or in the same ways with the same focus as those around me who were all NT’s. I wasn’t thinking I needed to call someone and be with them or run somewhere. I felt the agony of humanity and I felt so palpably the agony of that day and all that it meant in human suffering.

Yes, this is just one example, but likely way more individuals with Asperger’s, feel too much, it’s  not that we don’t have empathy or that we have not enough empathy.

I have learned how to grow and change and push boundaries in terms of how Asperger’s is traditionally thought to be. I know others have done this in their own ways too. We don’t get rid of Asperger’s (frankly I wouldn’t want that at all!) but we can continue to grow and to further extend the bridge of communication to and from NT’s and ourselves.

I experience being an adult with Asperger’s as having a different ability. Yes, at times, it can be challenging. I have also since 9/11 really learned how to have better emotional boundaries with all I feel for others and that are the feelings of others. I still feel it and it can still overwhelm me but I do have boundaries and ways of dealing with it more effectively. I think what I feel that is too much empathy (though I don’t express it as such) I have learned to sit with, feel, process, and move through much more quickly. I wouldn’t trade that for anything even though at times it is quite painful. To me, it’s me. It is also a profound connection to humanity that I have always known and would not want to change.

Feeling for others, even on the other side of the world, that I don’t know or will never meet, as deeply empathic as I can feel for someone close to me (though the feelings aren’t exactly the same) matters greatly to me.

I wonder, is part of the problem with empathy in humanity that not enough NT’s empathize enough with humanity beyond their loved ones? Not saying they don’t care but it seems that if we are trying to measure this and compare this that NT’s would lag behind many with AS when it comes to empathy for humanity to such a profound level it hurts in ways that are difficult to describe.

We need to give each other room to be who each one of us is. We need to be willing to communicate to understand how each other collectively and individually feel things and express things or feel things and don’t necessarily express them the same way as we continue to honour our differences respectfully.

© A.J. Mahari, January 17, 2015 – All rights reserved.

Asperger’s and Neurotypical People – What do they have in common?

People with Asperger’s Syndrome and people who do not have Asperger’s Syndome, (the majority of people) have among other things, one major thing in common that, I think, is way too often over-looked and that really matters. We need to be much more cognizant of this one major thing in common that spans all differences between those who have Asperger’s (AS)  and those who don’t, referred to as Neurotypicals (NT’s).

So, what is this one major thing that we all have in common, whether AS or NT? No one is normal. That’s right. NT people often look at people or think of people with Asperger’s as not normal. Well, guess what, people without Asperger’s or in comparison to those with Asperger’s as a group are not normal either.

If we shift our way of thinking about differences so that we are not thinking about them in polar opposite black and white ways, then perhaps we can make some in-roads to understanding by more or less leveling the playing field within what it means to be human. We don’t need to judge. In fact, those that do need to judge are insecure about something inside of themselves.

What is we turned this paradigm of NT = normal and Asperger’s = disabled or not normal around to say that Asperger’s = normal and that being an NT = abnormal. Think about it for a minute. Why? Well because for those of us that have Asperger’s Syndrome, it is normal. How we view the world, the way that we think, even some of the social lostness we may experience, is normal for us. Many with Asperger’s think it quite abnormal and maybe even to the point of silly that NT’s like to chit-chat on surface levels about things repetitively talked about whether you know someone or not. To NT’s this is a social thing. To people with Asperger’s the purpose it serves, if there is one, makes no sense. It is not logical. We don’t have a need and for many not desire to be engaged tha t way.

What is all NT’s had to feel judged for what they want, need or desire socially even i ncluding the surface-type social nuance chit-chat that society deems “normal” because the Asperger way of seeing that that small talk as without purpose and therefore lacking in meaning became the social “norm”. Imagine what that might feel like if you are an NT?

Just today I witnessed a neighbour shovelling a lot of snow away from her vehicle as was another neightbour. She and the other neightbour spoke briefly a few times in what seemed like small talk. I was clearing out my driveway and was reminded of how I just don’t feel the need for that type of communication. Do I do it sometimes with some people, yes, but that’s only because beyond what it feels like to me or doesn’t mean to  me it is a “social convention” that the NT majority ascribes to.

Then along came another neighbour, apparently new in our complex, who was passing by where I live and where this neighbour was digging her car our of the snow, he was on his way to the garbage dumpsters. She engaged him in small talk, strangers, yet needing and wanting to talk as if they knew each other. He engaged back, though less enthusiastically it seemed. They yacked for a while. I don’t know what about as I wasn’t paying attention. She talked more than he did. He seemed to want to go and then he must have said something to that effect. I was aware as he was going to passing by me again on his way back to his place, that I turned my back so as not to be engaged in this stranger on stranger, strange small talk.

Well, suddenly I hear, “Good morning!” All nice and friendly. It felt awkward. I was in a middle-ground no-win of sorts. I didn’t want to engage or be engaged in small talk but there he was, and I did pick up the friendly tone and so I said, “Good morning” back as I turned to face him. He then said, “Wow, you’ve got quite the job ahead of you there” referring to all the snow I had to shovel off my driveay including the big huge pile left at the bottom of the driveway by the snow plow. I just said, something back, like, “Yeah sure is a lot of snow.” He resplied, “That’s for sure.” and luckily with that he went on his way and our small talk was done.

No big deal. Doesn’t hurt. But from my Apsie perspective, what was important about that? What was the purpose of stating the obvious to a stranger, me replying with the obvious and then nothing? Herein lies a difference.

However, this difference does not make my NT neighbours normal and me abnormal but one does get the sense of such judgment, in various ways, quite often.

People with Asperger’s are just expected to keep pushing out of what is normal for them to be NT-like for NT’s. Okay, sometimes, sure. But really, why do we have to do this? Is there not some middle-ground understanding that we can achieve wherein each of us takes some responsibility for our differences without judgment and wherein we realize we have one thing for sure in common, neither a person with AS nor an NT is normal.

Normal is a construct that when tried to be applied in reality or real working terms of engagement does not equate to meaning anything objectively. Only in subjective comparison that usually includes judging difference as opposed to accepting it can there be any meaning derived in terms of the construct of normal which is at best a construt without an objective application that it can meet with in the course of what it means for  people with differences to be going about life the way that they see fit.

© A.J. Mahari – February 9, 2013  – All rights reserved.

Asperger’s – Empowering Different Ability

Asperger’s Syndrome is often, like so many other “conditions” pathologized, defined as “not nomal” – what is normal anyway? Most people think normal is whatever they are like or value. There is no such thing as “normal”. It’s all about difference. Author, Life Coach, BPD/Mental Health and Self Improvement Coach, A.J. Mahari, herself, a person with Asperger’s Syndrome firmly beleives from her own life experience that those with Asperger’s need to learn (if they haven’t already) – those with any major and often judged difference from what the mainstream values as “normal” – to empower what is their own different ability.

 

Asperger’s Syndrome and Adulthood Ebook and My Asperger Experience Audio © A.J. Mahari

© A.J. Mahari, April 10, 2011 – All rights reserved.

 

Asperger’s Syndrome – People are Not Stereotypes

The diagnostic criteria for Asperger’s Syndrome, like so many other “labels” is so stigmatizing and stereotyping. As if all people with any given “label” or any group of people, regardless of why or how they are grouped together are a) all the same and/or b) all-good, or all-bad – c) acceptable or not acceptable based upon those who would judge others by how much of themselves they see mirrored back to them, or not. Each and every human being is first and foremost an individual human being. Why is it that so many people lump all  people with Asperger’s together like we are all the same? We aren’t. We don’t all experience Asperger’s the same either.

People with Asperger’s Syndrome (AS) are different in some ways from Neuortypicals (NT’s). But, so too is each Aspie different from other Aspies. So too is each NT different from the next person. We all have strengths and weaknesses. Life is about radically accepting that and learning that weaknesses and vulnerability are strengths too. Sometimes what one thinks is his or her strongest strength or quality may well not be. Life is about so much paradox. The more we can find a balanced middle-ground the better off we will all be collectively and individually. If we, those with Asperger’s and NT’s meet in the seemingly-impossible middle-ground that stands all around us, in that space and from that mind-set we can learn more about not only tolerance of difference but respect and celebration of difference – an acceptance of difference that does not judge one way of being as better than another.

Make peace with your experience with Asperger’s Syndrome in your life. I have. Self-acceptance and self-love and understanding are so very important. A.J. Mahari, herself, an adult with Asperger’s is also an Author of over 20+ Ebooks, a Life Coach, BPD/Mental Health, Asperger’s, and Self Improvement Coach. Mahari makes the point that no one is perfect and that there is no such things as normal. The construct that neurotypicals are normal and Aspie’s aren’t is a polarized and arbitrary one at best. It doesn’t have to mean anything to you. You don’t have to be defined by this dichotomy or adhere to it either. Free yourself from feeling “less than”. Celebrate who you are and know that difference is just that – different. It doesn’t have to mean anything else.

 

 

 


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


 

Asperger’s Syndrome, and yes I have Tourette Syndrome (TS) too, which often seems to “go with AS” and is something that I never admitted online before. I guess it took me a bit longer to accept and come to terms with that and to be as okay with and about that as I am anything else about myself. Why? Simply because I am no more defined in the totality of what it is to be human and to be me by Asperger’s or Tourette Syndrome than I am by the sum total of all that makes me who I am.

 

© A.J. Mahari, March 27, 2011 – All rights reserved.

 

 

[email_link]

 

Do Aspies Have Empathy For Others?

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.

 

 

[email_link]

The Pardox of Social Impairment and Profound Social Disconnectedness

There is an inherent and burdening paradox within the reality of being an adult with Asperger’s Syndrome. Central to the most devastatingly-challenging reality of Asperger’s Syndrome is its synergistic social impairment intrinsic to or juxtaposed to a profound social disconnectedness.   


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


 

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

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

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

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

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


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


 

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

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

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

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

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

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

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

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

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

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


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


 

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

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

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

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

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

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

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

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

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

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

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

© A.J. Mahari February 2005    


   

•Tantalus – (Greek mythology) a wicked king and son of Zeus; condemned in Hades to stand in water that receded when he tried to drink and beneath fruit that receded when he reached for it. (Source: www.dictionary.com)   


[email_link]

American Psychiatric Association DSM-V – Asperger’s To Be Put In Same Category as Autism and PDD’s

The American Psychiatric Association wants to include what is currently known as Asperger’s Syndrome in the same category or classification as autism and other pervasive developmental disorders (PDD’s). As a person with Asperger’s Syndrome I felt confused and angry when I first found this out. I found out when I saw a tweet from CNN’s Anderson Cooper.  How in the world can this make any sense? While Asperger’s Syndrome (AS) is on the autistic spectrum there are vast, notable, and important differences between AS, classic autism, other PDD’s, and even autistic spectrum disorder (ASD). What do you think? I can’t understand how this will benefit anyone, least of all those with Asperger’s Syndrome.

 


(CNN)“People with Asperger’s syndrome would be included in the same diagnostic group as people with autism and pervasive developmental disorders, according to new guidelines under consideration by the American Psychiatric Association.

Psychiatrists are in the process of revising the guidelines, known as the Diagnostic and Statistical Manual of Mental Disorders. The manual has implications for how psychiatric drugs are developed and prescribed, what treatments get covered under insurance plans, which approach doctors take in treating their patients, and how patients view their own identities.

Anyone who has received a diagnosis from a mental health professional has most likely had his or her symptoms defined by the guidebook.

The revisions, which will be considered for the DSM’s fifth edition, due in 2013, were made public Wednesday at DSM5.org.

Scientifically, the distinction is correct; the research on people with these conditions has shown that Asperger’s is on the mild end of the spectrum of autistic disorders, said Dr. Michael First, professor of clinical psychiatry at Columbia University, who worked on the version of the DSM that is currently in use.

Of concern is that Asperger’s has been destigmatized and autism has not, he said. Over the past 15 years, communities have formed around Asperger’s, and the condition has taken on more positive tones with the notions that Albert Einstein and other intellectual luminaries may have had it.

Given that Asperger’s has become more acceptable, First favors keeping it as a diagnosis.

“This is a case where the science of the decision and social ramifications of the decision are separate,” First said.

But the DSM does not make diagnoses based on the stigma of one group over another, said Catherine Lord, director of the University of Michigan Autism and Communication Disorders Center, who is on the American Psychiatric Association committee looking at autism.

“Many people prefer to use the term Asperger’s, and we’re not saying that you can’t describe yourself that way,” she said. But the research shows “no scientific evidence that there are separate syndromes.”

 Source: CNN Health


Catherine Lord,(member of the American Psychiatric Association committee looking at autism) quoted above, by CNN, said, “… the DSM does not make diagnoses based on the stigma of one group over another” and that “… the research shows ‘no scientific evidence that there are separate syndromes.’ “ Well, might be too commonsense to actually consider anything to do with the stigma or how it can effect countless lives right? I am not sure that anyone has tried to argue that Asperger’s and classic autism or ASD are “separate syndromes”. I think appropriately the distinction that was made, and I think that needs to continue to be made, has all to do with degrees of the autistic spectrum. After all it has long-since been referred to as a spectrum with understandable reason. That is not the same as trying to say they are separate. However, how on earth can anyone then define them or classify them as the same just because they can say there isn’t any “scientific evidence” to prove they are separate? Say what?

This leads me to wonder what is really behind this. I say that because Lord’s “reasoning” doesn’t seem very sound. To say that AS is the same as autism – or should be classified that way – defined that way – diagnosed that way – because there isn’t any “scientific evidence” that they are separate syndromes flies in the face of the vast differences that have been identified and acknowledged for some time now. Differences that matter. Differences that help people to understand themselves and to learn to cope with all that they have to cope with. Differences that do, I think, negate the sameness that would justify lumping them together or merging them.

What could be helpful about going backwards in definition, experience, and understanding?

And it gets worse really, also quoted by CNN on Anderson Cooper’s 360 Blog: “Dr. Charles Raison, psychiatrist at Emory University, acknowledged that “autism” is a “frightening word,” and that moving Asperger’s under autism may pathologize it more. Still, it is more accurate to call it a form of autism, he said.”

So, despite pathologizing those of us with Asperger’s Syndrome more, Dr. Raison believes that being more accurate and merging the DSM definition is more important. Who will this possibly benefit? In fact, I know as someone with AS myself, that many of us actually work with and talk often with parents of children with varying degrees of autism on the spectrum up to and including classic autism and that the fact that Asperger’s has made it somewhat out from under a lot of stigma and pathologizing to be more understood – not just negatives but strong positives too –  long enough to help others understand and to give hope that the autistic world (worlds really) can often, one way or another, to one degree or another, connect with the neurotypical (NT) world.

It’s just that no matter what you classify all of us as, we can’t, and many don’t want to anyway, conform to NT thinking. This means that neurotypicals need to stop trying to change their aspie or autistic kids (adults even) into NT’s. It’s just not in the hard-wiring. Difference needs to be respected. What NT’s define as disability is truly a different ability – perhaps one NT’s still don’t well understand. For all the really brilliant, creative, and innovative people throughout history identified as likely having had Asperger’s Syndrome, NT’s – yes even the people on the DSM-V committee – need to ask themselves where would the world be without the tremendously valuable contribution of many with Asperger’s Syndrome whose brains were, thankfully, wired differently?

I think it reasonable to conclude that this proposed merger of Asperger’s Syndrome with Autism and PDD’s is to serve some function or purpose for those who define things and diagnose things. It can’t possibly be being forwarded to help anyone on anywhere on the autistic spectrum.

The revisions are being considered for the DSM’s fifth edition, due in 2013. They were made public Wednesday at DSM5.org, and are available for public comment until April 20, 2010. I would sure urge anyone who, like myself feels very strongly that this change does not make any sense at all to let this committee know how you feel. Every voice counts.

If they make this change it will cause a tremendous amount of confusion. I don’t think people with Asperger’s Syndrome (AS)  aren’t aware that AS is a form of autism and that it is described as milder and has its own traits. Traits which of course not all people with AS have in the exact same ways or numbers or to the same degree.

However, to think that if these changes are made in the DSM-V that someone like myself would be labelled autistic right along with someone who has classic autism or another form of a pervasive developmental disorder (PDD) (no disrepect meant to these groups of people) the result could only be massive confusion from all who are not professionals. It would also mean that the ground gained in that Asperger’s Syndrome has travelled out of that abyss of stigma would be compromised at best and perhaps lost at worst.

It would mean being even more misunderstood than people with AS are now.  It might also lead people with relatives with classic autism to question why their loved ones are one way and many of us are quite different – if we were all diagnosed or “labelled” the same. It would likely also mean that many with AS will have a much more difficult time finding appropriate services. For adults and women with AS in particular it may just leave us even more invisible in terms of any support or help that many need than has been the case to date.

What do you think? If you have Asperger’s Syndrome, or a loved one with it, does this make any sense to you? Do you want to have to try to explain to people that you have autism? Can’t you just hear it now? Who will understand? How can this be a positive change for anyone?

© A.J. Mahari, February 12, 2010

[email_link]

Is Self Help Effective For Asperger Syndrome?

Asperger Syndrome is an Autism Spectrum Disorder (ASD). It was first included in the Diagnostic and Statistical Manual (American Psychiatric Association) under the general category of Pervasive Developmental Disorders (PDDs) in 1994. It is named after Hans Asperger, of Vienna, who wrote about this cluster of characteristics as early as 1944. Are self help principles, ideas, and practices effective for people with Asperger’s Syndrome?

  • “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.

[email_link]

Help For People With Asperger’s Syndrome?

Many people who know people with Asperger’s Syndrome, or have someone with Asperger’s Syndrome (AS) in their families write me exhausted and exasperated as to what to do to help the person with AS in their lives. Can you help someone with Asperger’s or is the help just perceived as too stressful and too intrusive? Do you feel frustrated and like your every effort to help the person with Asperger’s in your life just makes things worse? As a life coach, it has become apparent to me that this is a common experience for many a neuro-typical (NT).

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.

 

[email_link]

There Are So Many Paths

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.

[email_link]

Archives