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Asperger’s Syndrome

Adults With Asperger’s and Too Much Empathy

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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.

The Stigmatizing of Adults with Asperger’s Syndrome

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There is a lot of stigma about what it means (especially in adulthood) for an adult to have Asperger’s Syndrome. Why is that? There are as many reasons as people who hold stereotypical views about Asperger’s Syndrome in adults. The number one stereotype is that all with Asperger’s are the same and fit all listed criteria (no longer included as such in the DSM-5 as it was in the DSM IV) that you can read about online. This is just not true at all. Firstly, there is are many differences between all who have Asperger’s Syndrome (listed now in the DSM-5 within the “Autism” outline – something that most in the Asperger community do not like) the most obvious one being the differences, for the most part, again, allowing for individual differences, between males and females. Females tend to be less affected when it comes to lack of empathy, lack of compassion, and other aspects of Aspergers than males are (which varies in a wide-ranging way with all adults with Asperger’s anyway) because females are still socialized differently (Reference: “Asperger’s Syndrome” by Dr. Tony Attwood) from males and Asperger’s does occur more often in males than females. Or, because there is only a diagnostic scale for males and not one for females, more females who fit the criteria would be diagnosed if not for this prejudice in the diagnostic process.

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Other stigma producing misconceptions about adults with Asperger’s include the following:

  1. That Asperger’s Syndrome is just a disability
  2. That adults with Asperger’s have no social skills
  3. That adults with Asperger’s get “triggered” by things – that’s not really an accurate statement at all
  4. That adults with Aspergers are difficu
  5. lt to get along with
  6. That adults with Aspergers are people to fear, angry a lot, or often having meltdowns
  7. That if one has Asperger’s is effected by everything attributed widely to it – this is far from true and is very individual
  8. That all with Asperger’s need or even want to be “cured” – there is not cure currently but not everyone feels they want one
  9. That adults with Asperger’s can’t have empathy, compassion, learn to navigate effectively socially
  10. That adults with Aspergers are only interested in narrow focus of interest
  11. That adults with Aspergers are mentally ill – this is not a mental illness at all

 

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1. That Asperger’s Syndrome is Just a Disability: As an adult with Aspergers I happen to know first hand that there are many blessing and a true giftedness that I have in part because I have Aspergers. Many, like myself, with Aspergers in adulthood are very “high functioning” and learn or have learned to use our narrow focus or focuses of interest to our benefit to take the unique and often faster and more efficient way that we can take in information, process it, synthesize it, and move forward with it in many ways, along with an above average intelligence, to pursue University education and contribute to the world in many fields as professionals. In my experience as a person with Asperger’s Syndrome, I believe it has given me a giftedness in many areas (Okay, not socially, but that doesn’t mean I have weaker social skills than the average NeuroTypical). Aspergers, in my experience, is also very much about having a different ability. Why do we have to judge the way “most people” do things then ascribe to that understanding, “normal”, (which is flawed non-existing concept to begin with) to it? Why is this incorrect assumption supported by an “us” vs “them” neurotypical version so supposed “reality”? A supposed “reality” that is lacking in any logic. Why is a different ability and other differences judged or perceived as “les than” or “abnormal” or “undesirable” when really any comparisons are “apples and oranges” type comparisons and do not even have their genesis in any common logical factors from which to draw this conclusion of disability in the first place.

2. That adults with Asperger’s have no social skills: While there are some deficits that are a part of Aspergers and the context of “socialization” is one of them, why is it assumed that all people with Asperger’s are without adequate social skills? The truth about his is that the degree to which people – individuals with Aspergers have or lack social skills is highly individual and therefore it is stigmatizing and stereotyping to think that we are all the same. I have found that one can map and learn from past experience enough to be able to continue to learn to better socialize and to function in social situations in ways that pass as “normal”. The biggest difference I find in this area is that I am firstly an introvert, (according to Myers Briggs test results, actually I am an Introverted-Extrovert) just to make things a little more fun, as in complicated an challenging :) This not withstanding, what I know about my experience as an adult with Aspergers is that I do not have the same “social drive” or “social needs” as extroverted people or as NeuroTypicals generally. However, that is not something that is easy to accurately measure or quantify because there are many Neurotypicals who are introverts and/or lack social skills or a drive to socialize as much as extroverts for many reasons and they aren’t considered “weird” or to have s disability. Though they too, may be judged as “too different” or “weird” by the most social extroverted Neurotypicals. My question for you to consider here is, if you are an extroverted and very socially driven Neurotypical why do you consider (if you do) that this is the only desirable or “normal” way to be? Could it be that you judge based only on your own ideas about how people should be perhaps because you feel uncomfortable or confused by people who are not the same as you?

3. That adults with Asperger’s get “triggered” by things: This is not an accurate understanding, in my opinion. People with Aspergers are not “triggered” in the sense that someone with PTSD may be “triggered”. Rather people with Aspergers have sensitivities to various – again individual – things or experiences in daily life. Rather than being “triggered” we have different ways of coping with stress. We have challenges with “flow” and with quick or seamless transitions from one thing to another. Some have tolerance thresholds that vary. Meaning that if they have to work, they cannot transition from interruptions back to work, or be interrupted in their work for other reasons and have people coming and going who don’t show up and leave at times that are predictable. Aspergers does leave us much more literal than NeuroTypicals. If we are told something will happen at 1pm (even though many of us know better intellectually) we will find it stressful if that literal arranged time is not met. How each person with Aspergers can or cannot cope with this varies greatly. It is also very difficult for many with Aspergers to transition from work to different tasks, to socializing, and then having to transition back to work. For example, if I have to wait for a contractor to come to my home and do some work, and even though I hope for the literal time I was told this would happen (knowing intellectually it’s unlikely anyone arrives on the dot of that literal time) I often have to put off other tasks or work until that contractor arrives and/or his work is under-way. Then I can leave it and go on do my own thing o work while they do their work. Stress can be produced, for example, in my example, when the contractor comes two hours after the literal time given, or when the contractor fails to show up at all on the day specified, let alone anywhere near the literal time arranged. If this continues over a period of time the stress that is causes me increases. While I try to continually de-stress, and often do so quite effectively, a cumulating stress that is on-going for a month plus for example, will become somewhat untenable to continue to tolerate and be able to get my work done and other things I want to do done or just relax and find something recreational to do. The point is that I am not “triggered” by the work of the contractor or unfinished things. It is the stress of managing to deal in and on-going way with a situation (I recently encountered with what is at the time of writing this a still on-going renovation of a townhouse I moved into recently) that feels invasive and intrusive to me. Even though I know intellectually that it’s not intrusive and invasive in any personal way or even isn’t as such in reality. It is the nature of my needing and wanting more time alone to pursue whatever I might pursue in work (writing, caring for my dogs, with friends, or many other things). It is not only an Asperger transition difficulty, it is also an introvert’s need to not be having people coming and going so much and end up with a lot of wasted time if time is set aside and then no one shows up at time I was told they would. (I get, again, intellectually that these things happen) Knowing that others may well not understand any of this if I try to explain it, nor can it be “accommodated” or change a given situation, necessarily, I am left to deal with higher stress than I would normally feel. This is not a “trigger” it’s long-term low-grade stress that builds and it is also low-grade frustration that builds and increases making things more difficult for me in ways others may not be able to relate to. But this is different from the traditional psychological definition and scope of a “trigger” in many other challenges that people face.

4. That adults with Aspergers are difficult to get along with: This is a stigmatizing stereotype that does not take into consideration differences to which we are entitled and worthy of having respected by others. Just as we have to be willing to compromise with others in situations where, for example one is living in the middle of a renovation, or requires repair work done on something, or things of that nature, others have to be respectful of perhaps different needs that I know can’t always be accommodated but that definitely are worthy of being without disrespecting a person’s difference, wherever possible. There is an inherent and very quick-to-judge a person with Aspergers as “difficult to get along with” if others to not pause to ponder differences and not expect that those with Aspergers or more introverted NeuroTypicals will all handle the stress of certain situations in the same way. I’m not sure that all NeuroTypicals would handle all situations in the same way themselves. When you move into a new place and people don’t know you, as I did recently, they can’t know I have Asperger’s either can they? So beginnings can be more difficult generally for me and for others due to this. Why? Because learning about me as an adult with Aspergers – me as an individual with Aspergers not me as a person with that “Asperger’s” read about online with all kinds of “traits” or things described therein that have nothing to do with me takes time. Also, because people, rather than jump to the judgment or unrealistic expectation that everyone new in a place will know what to do or will be included or assimilated in the same way, need to first try to dialogue and understand differences before they return to an unwelcoming (perhaps by my differences – and we all have them regardless) self-comfort culture of who they know and are comfortable with and then leaving me on an island of sorts. People with Aspergers like all people, perhaps to a somewhat lesser degree, hard to quantify, are not more difficult to get along with for anyone willing to be friendly, welcoming, and take the time to set aside judgment or what have you about differences and get to know an individual who is new and not pre-judge and end up talking about that person as “weird” or “difficult” when in my case, I can say with assuredness, this is just not really the case at all, when people really talk to me and get a feel for who I am. People with Aspergers are not more difficult to get along with when they are given the decency of respect and a chance to be known versus being pre-judged whether others know or not that they have Aspergers. People need to realize that while we all have difference, we still do have a lot of basic human things in common. We need to build bridges and not be in such a hurry to categorize and label and judge people and then just ignore them or as some people do just get their backs up. People who pre-judge and are not welcoming or willing or able to consider differences have their own issues and may be considered somewhat difficult themselves and need not project that on to people with Aspergers.

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5. That adults with Aspergers are people to fear, angry a lot, or often having meltdowns: People with Aspergers, speaking generally, are more  likely to be honest to a fault, perhaps out of “socially accepted convention” in ways that seem or are perceived as blunt. Many with Aspergers have little to no frame of reference of the NeuroTypical “social context” of saying things that they don’t mean or being dishonest – presenting as friendly while not meaning it which a person with Asperger’s will literally believe to begin with and then be confused by as they have to then try to figure out the duplicity. Speaking for myself, I am used to this so-called “NeuroTypical social context” which can be defined as a less than honest way of communicating and handling needs/wants, boundaries and the like effectively. Simply put, not having Aspergers does not mean you are “normal”. What is normal? Normal is a concept thrown around, thought about and judged that I defy someone to actually define. People with Aspergers, just like people who do not have Aspergers (called NeuroTypicals -NT’s) can have meltdowns. Like any individual, the propensity for a meltdown is an individual thing. In my case, it is very rare I have a true meltdown. And not all meltdowns would be the same regardless. There is no reason to fear people with Aspergers. This is especially true when you learn a bit about Aspergers but not without getting to know what is true for any individual with Aspergers (AS) or not because as I’ve said, each one of us is not effected in the same way or the same degree that you may think if you just paint us all with one brush of what you may read online. People with AS are often a lot less angry than their NT counterparts. This notion, stigma and stereotypically uninformed way of thinking that people with Aspergers are to be feared or are angry a lot or are often having meltdowns is prejudicial thinking to say the least. Again, it is highly individual. Not that anyone with AS alone would need to be feared at any point regardless due to having AS. Speaking for myself, again, I experience a tremendous amount of inner-happiness and joy in my life in many ways. I can experience this with others but I experience and to be honest value the quality of the inner-experience more than shared with others experience. That does not mean I don’t like to share with others, work with them, or be social. I do. It just means I will prefer and need more time on my own than I share with others which again is not totally about having AS, it is also a lot to do with being introverted. I think people easily fear what they do not understand. So working to help others understand me as an individual and yes, an individual with AS, as I need to get to know and understand others and often the different challenges they are facing in their own lives is how we can bridge differences in an accepting way and find common understanding, respect, and common ground with each other.

6. That if one has Asperger’s is effected by everything attributed widely to it: This is perhaps the most stigmatizing, stereotyping, disrespecting, painful, derisive, unkind, and inaccurate assumption made about people with AS. We, who have AS, are not all the same at all. The fact that I have AS does mean it is the sum total of who I am. It is not. It is something that is a part of me. Their is much more to me than just AS. I value very much the positive attributes that result in my life and my different ability that is due to being an individual with Aspergers. Unlike what you can read about Asperger’s Syndrome, that would not apply to me, would be that “all with AS lack empathy,” have no compassion, lack personal insight as to how they relate to others or are perceived by others, care only about themselves, “lack social skills”. These do not apply to me at all. They do not apply to all with AS. There is also that vast difference between genders with AS. However, having said that, you still have to consider the individual, be the male or female. Please do not read about Aspergers and then think you know someone and that’s who or how they are. It is pre-judging and intolerant and disrespectful to generalize based on a label that many write about from a “professional” or “academic” perspective (who do not have AS) and who really may not have encountered those of us more “high functioning” as much (if at all) to the degree they encounter those who are much more greatly affected and lower-functioning due to Aspergers. It is just a common sense reality that those who have more of the listed and defined “Asperger traits” than those of who don’t are not the same and need to be considered (all of us) individually and that “professionals” encounter much more often those who need more help and are lower-functioning than those of us who do not need their help and are higher-functioning. People with Aspergers are not going to fit all criteria you can read about and again, each is an individual who needs to be seen first and foremostly as such and not painted with the broad-stroke “abnormal” approach to defining what it means to have Aspergers.

7. That all with Asperger’s need or even want to be “cured”: I would question if Asperger’s Syndrome, now categorized in the DSM 5 under Autism Spectrum Disorders,  should be in the DSM at all. Should it even be considered something that is “abnormal”? I don’t think so. I think it’s about difference. Difference in many ways and also difference in ability. People with Asperger’s or on the higher functioning end of the autism spectrum are not disabled only or that much. Rather we are differently abled in a world that seeks to still judge and understand people based on similarity to self or to group, community, etc. rather than taking each person for the individual that they are and working harder at accepting and differences and learning that in doing that we can then find more common ground similarities after all. As an adult with Asperger’s Syndrome I find it much more a gift than a “disability”. I find it much more to be a part of me then some way of defining who I am as an individual in totality. I don’t need to be “cured” from anything. I believe that Autism, all along the spectrum, is an different way of being, thinking, expressing, (or  not expressing for some) connecting, (not connecting for some) but there is in everyone on the Autistic Spectrum despite what some lower-functioning “classic autism” a quality of life. A quality of inner-life in many ways that those who are NeuroTypical cannot at all understand. There is not need to cure what is simply a different way to be.

8. That adults with Asperger’s can’t have empathy, compassion, learn to navigate effectively socially: Again, this is a stigmatizing and stereotyping notion or cognitively-distorted belief ascribed to those with AS. It is also very important again to keep in mind the individuality of each with AS and not lump us all together. There are people with Aspergers (often male but not limited only to males) more profoundly affected by AS who may not show or express in NeuroTypical ways empathy or compassion or learn to navigate effectively socially. But this is highly individual. And even in those that seem to lack the expression of empathy or compassion, I have written about his on this site elsewhere in detail, this does not mean they lack empathy and compassion totally but it does mean that one would have to be very attuned to the ways that you could glean this from some those with Aspergers who are not going to express it the way that NT’s are used to receiving it. For example, and this does not apply to me personally, (though I do need to remind myself from time to time in social contexts) due to the (and it varies too) literal nature of Aspie understanding and interpretation I have had clients with Asperger’s or spouses (parents) of someone with Asperger’s ask my many times why does their Aspie loved one not tell them they love them? What is often the case, for many, is that they have been told they are loved but some with AS, being much more literal than (I and others) think that if “I told you once I love you, you know I love you, why would I have to tell you again and again”? Many people with Asperger’s (like myself) are quite capable of empathy, compassion and navigating the NT social world.

9. That adults (or children) with Aspergers are only interested in their narrow focus of interest:  For many, and especially younger children (“little professors”) with Asperger’s this can seem to be the case. Their is no doubt that each individual with AS has one to two areas of intense narrow focus. And they will want to talk about it intensely, often, perhaps in some cases in seemingly-unending ways. This is not the case with all. Yes all with AS have narrow focus on interest(s) than enjoy talking about them. As adults, however, many of us have learned that relating and conversations can’t always be about our narrow interest(s) focus and that we want and need to listen to what others are interested in to have effective and meaningful relating and communication with others. Having narrow focus of interest(s) is something that many of us get to know a lot about and become “expert” in and then go on to University, get degrees, and make careers in those areas of interest and contribute greatly to this world. Does that sound like Aspergers in that high-functioning sense is a disability at all? While it is true that Aspies have narrow focus interest(s) it is also true that not all will be doomed to only talk or share about them. Many of us will learn as I have learned a long time ago, there is a time and place for this. Making a career out of one’s narrow focus of interest(s) as I have like so many others with AS is an incredibly rewarding part of having AS because we get to work in areas that we truly are totally and deeply interested in. And, just another fact, to dispel stigmatizing stereotyping of those with AS, when you love what you are interested in genuinely and deeply it becomes a burning passion that helps you to be much more effective and skilled in your chosen profession and I know this feels for me like it’s not even really work. It is such a passion and I am freely driven out of interest and love of what I do, know, and have been educated in, to, in my case, help others heal, recover, or become unblocked in goal achievement, identify issues that they want to change in their lives, and help people with personal and on-going self-understanding and self-development. People (certainly in adulthood) with high-functioning Asperger’s Syndrome can and do expand their narrow focus of interest(s) in vibrant, practical, and exciting ways that contribute to our economies and the betterment of humanity and meaningful ways of working with and for people that improve the quality of their lives in wide-ranging fields including engineering, tech innovation, psychology, philosophy, science, research, medicine, law and the list is endless.

10. That adults with Aspergers are mentally ill: This is an absolute false-hood. A terribly stigmatizing stereotype that does not apply to Asperger’s or the Autism spectrum at all. It is true that some people with Asperger’s due to the nature of navigating deficits (to “normality – whatever that is) do develop some mental health challenges. But Asperger’s itself, is not at all a mental illness. This is why I’ve always wondered why it is seen by psychiatry to be fit into (in their opinion/judgment) the “Bible of Psychiatry” the DSM – now with version 5 being in use though being boycotted by many professionals because it has long-since been perceived by many professionals as being a rather arbitrary and pseudo-science at best collection of largely unchallenged pathologizing of humanity now driven primarily by U.S. Big Pharma with an agenda to make more money for all by taking it to such an extreme in the pathologizing and categorizing (by a small unregulated and not peer-reviewed “working group” of psychiatrists) people to the point that as noted Australian Psychiatrist, Dr. Niall McLaren, was quoted on my Psyche Whisperer Radio Show in an interview we did (or he may have said this to me privately – as having said, the DSM is so out of control and pharmaceutical industry driven (prior to the publication of the current DSM version 5) that “you could now diagnose a ham sandwich” with a variety of “psychiatric illness” which biopsychiatry has now since the “decade of the brain” (for what that is worth) in the 1990’s has laid claim to the scientifically un-proven illusion that “mental illness is a brain disorder”. This too is bunk. Abject false “flawed-theory” put forth as if it were proven science, which it is not. The various named aspects of various degrees of autism now included in the DSM-5 under the categorization of “Autism Spectrum Disorders” must be challenged in so many ways because Autism on any point of that spectrum has nothing to do with “mental illness”.

© A.J. Mahari, July 26, 2014 – All rights reserved.

Individuals with Asperger’s Syndrome don’t lack empathy – in fact if anything they empathize too much

boyASpillowA groundbreaking study suggests people with autism-spectrum disorders such as Asperger’s do not lack empathy—rather they feel others’ emotions too intensely to cope.

People with Asperger’s syndrome, a high functioning form of autism, are often stereotyped as distant loners or robotic geeks. But what if what looks like coldness to the outside world is in fact a response to being overwhelmed by emotion—an excess of empathy, not a lack of it?

This idea resonates with many people suffering from autism-spectrum disorders and their families. It also jibes with new thinking about the nature of autism called the “intense world” theory. As posited by Henry and Kamila Markram of the Swiss Federal Institute of Technology in Lausanne, suggests that the fundamental problem in autism-spectrum disorders is not a social deficiency, but rather an hypersensitivity to experience, which includes an overwhelming fear response.

“I can walk into a room and feel what everyone is feeling. The problem is that it all comes in faster than I can process it.”

“There are those who say autistic people don’t feel enough,” says Kamila Markram. “We’re saying exactly the opposite: They feel too much.” Virtually all people with ASD report various types of oversensitivity and intense fear. The Markrams argue that social difficulties of those with ASDs stem from trying to cope with a world where someone has turned the volume on all the senses and feelings up past 10. If hearing your parents’ voices while sitting in your crib felt like listening to Lou Reed’s Metal Machine Music on acid, you, too, might prefer to curl in a corner and rock.

But of course, this sort of withdrawal and self-soothing behavior—repetitive movements, echoing words or actions and failing to make eye contact—interferes with normal social development. Without the experience other kids get through ordinary social interactions, children on the spectrum never learn to understand subtle signals.

Phil Schwarz, a software developer from Massachusetts, is vice president of the Asperger’s Associaton of New England and has a child with the condition.

“I think that it’s a stereotype or a misconception that folks on spectrum lack empathy,” he says. Schwarz notes that autism is not a unitary condition—“if you’ve seen one Aspie, you’ve seen one Aspie,” he says, using the colloquial term. But he adds, “I think most people with ASD feel emotional empathy and care about the welfare of others very deeply.”

So why do so many people see a lack of empathy as a defining characteristic of ASD? The problem starts with the complexity of empathy itself, which has at least two critical parts: The first is simply the ability to see the world from the perspective of another. The second is more emotional—the ability to imagine what the other is feeling and care about their pain as a result.

The fact that autistic children tend to develop the first part of empathy—which is called “theory of mind”—later than other kids was established in a classic experiment. Children are asked to watch two puppets, Sally and Anne. Sally takes a marble and places it in a basket, then leaves the stage. While she’s gone, Anne takes the marble out and puts it in a box. The children are then asked: Where will Sally look first for her marble when she returns?

Normal four year olds know that Sally didn’t see Anne move the marble, so they get it right. By 10 or 11, mentally retarded children with a verbal IQ equivalent to three-year-olds also guess correctly. But 80 percent of 10-11 year-old autistic children guess that Sally will look in the box, because they know that that’s where the marble is and they don’t realize that other people don’t share all of their knowledge.

It takes autistic children far longer than others to realize that other people have different experiences and perspectives—and the timing of this development varies greatly. Of course, if you don’t realize that others are seeing and feeling different things, you might well act less caring toward them.

But that doesn’t mean that once people with ASD do become aware of other people’s experience, they don’t care or want to connect. Schwarz says that all the autistic adults he knows over the age of 18 have a better sense of what others know than the Sally/Anne test suggests.

Schwarz notes that nonautistic people, too, “are rather lousy at understanding the inner state of minds too different from their own—but the nonautistic majority gets a free pass because if they assume that the other person’s mind works like their own, they have a much better chance of being right.” Thus, when, for example, a child with Asperger’s talks incessantly about his intense interests, he isn’t deliberately dominating the conversation so much as simply failing to consider that there may be a difference between his interests and those of his peers.

In terms of the caring aspect of empathy, a lively discussion that would seem to support the Markrams’ theory appeared on the Web site for people with ASD called WrongPlanet.net, after a mother wrote in to ask whether her empathetic but socially immature daughter could possibly have Asperger’s.

“If anything, I struggle with having too much empathy” one person commented. “If someone else is upset, I am upset. There were times during school when other people were misbehaving, and if the teacher scolded them, I felt like they were scolding me.”

Said another, “I am clueless when it comes to reading subtle cues, but I am *very* empathic. I can walk into a room and feel what everyone is feeling, and I think this is actually quite common in AS/autism. The problem is that it all comes in faster than I can process it.”

Studies have found that when people are overwhelmed by empathetic feelings, they tend to pull back. When someone else’s pain affects you deeply, it can be hard to reach out rather than turn away. For people with ASD, these empathetic feelings might be so intense that they withdraw in a way that appears cold or uncaring.

“These children are really not unemotional, they do want to interact, it’s just difficult for them,” says Markram, “It’s quite sad because these are quite capable people but the world is just too intense, so they have to withdraw.”

Article written by Maia Szalavitz

Maia Szalavitz writes about the intersection between mind, brain and society for publications like Time online, the New York Times, Elle and MSN Health. She is co-author, most recently of Lost Boy , the first memoir by a young man raised in Mormon fundamentalist polygamy, Brent Jeffs. She is senior fellow at Stats.org, a media watchdog organization.

Asperger’s Syndrome Does Not a Murderer Make

Connecticut Town Continues To Mourn Loss Of 26 In School ShootingThe horrifically tragic mass shooting at Sandy Hook Elementary School in NewTown CT, U.S.A., Friday December December 14, 2012, which took the lives of 20 beautiful and innocent children and six brave adult educators left most people, not only in NewTown, o the United States, but all over the world, shocked and grieving.

I want to extend my deepest sympathies to NewTown, and all who lost loved ones in this senselessly violent and tragic way. May the tragic and senseless murder of these innocent children be the tipping point for change in the United States, not only gun law change, but a change from a culture of violence to a more peaceful culture. These angels need that meaning to be attributed to their short lives and senseless deaths.remembersandyhook Anything less than this will just be another political failure to truly represent what the majority of Americans want, safe schools, a more peaceful society where innocent children and educators are not murdered in mass shootings leaving not only a country, but a world grieving. These children cannot be lost in vain. Remember them with action for change in your culture and your gun laws and mental health system changes so that more can be helped before they end up doing what this shooter did.

What is also very concerning for those of us with Asperger’s Syndrome and our loved ones is that the shooter who perpetrated this horrific violence in NewTown apparently had Asperger’s Syndrome. This has lead many in the media to give a lot of stigmatizing and inaccurate inferences about Asperger’s Syndrome.

Asperger’s Syndrome is not a mental illness. It is also not something associated with planned violence, such as Adam Lanza’s mass shooting at Sandy Hook Elementary School.

Media in the United States, in particular, are now trying to correct some of their errors first reported with the, I think, still unsubstantiated shooter’s Asperger’s Syndrome. However, even in their attempts to make corrections, correctly informing people that Asperger’s Syndrome is on the Autistic Spectrum, at the hightest functioning end of that spectrum and that there is no evidence whatsoever that it is associated with planned violence at all, some programs, like a guest on the Dr. Drew show last week, while making clarifications in one paragraph, then followed that up by lumping (unintentionally I think, but still stigmatizing and the error was not corrected) Asperger’s in with a list of Mental Illness the guest expert was talking about. This is not helpful.

People with Asperger’s Syndrome are not all the same. Nor do they all have every trait or criteria that you may have heard about or read about when it comes to the question, “What is Asperger’s Syndrome”

I have also seen “talking head” experts on a wide variety of shows who have said that while there is absolutely no correlation between Asperger’s Syndrome and “planned violence” they have then said something about people with Asperger’s being aggressive or angry or implying some possiblity of violence but just not “planned”. Without further explanation, this too is stigmatizing and confusing for those who would misunderstand or still think that people with Asperger’s would be dangerous like that shooter in Newtown.

What they have failed to make clear is that some people with Asperger’s Syndrome, due to stress, frustration, over-stimulation (as others on the austistic spectrum can also exhibit) can, at times, have what are known as meltdowns. That’s when one just gets overloaded and stressed out and for some there is some anger or aggression in blowing off that steam so to speak. But this has nothing to do with shooting anyone or attacking anyone. This is a personal push-back against their own frustration which is turned more inward than outward and which is not the kind of violence that a mass shooter perpetrates at all. Not even close or to be associated with planned violence and killing people at all.

Whatever the outcome of further understanding of that shooter or lack thereof, what is very important, right now, is that people understand that people with Aserpger’s Syndrome are not shooters. That shooter in NewTown did what he senselessly did out of much more than a “lack of empathy” and if he has Asperger’s it is not the reason why he make the choices that he did. People with Asperger’s do not “lack empathy” the way that is often stated and that the DSM Criteria lists. And why is Asperger’s, which is not a mental illness in the “Bible of psychiatry” anyway?

People with Aserpgers do have empathy. They feel empathy. They are often very sensitive and emotional and respectful of people’s pain and feelings. What is vastly different for many with Asperger’s than Neurotypicals is the lack of expression of that empathy often and/or the reality that one with Aspergers can express empathy often in ways that are unlike the ways Neurotypicals understand it. Therefore, it is often not recognized.

Much of what you might read about Asperger’s on the web, does not fit all people diagnosed with it. Each person with Asperger’s is an individual. However, what we do know is that people with Asperger’s do not plan and execute violence.

To make the mistake of associating people with Asperger’s with that NewTown shooter, even if it turns out that he had Aspergers, it was likely just one of what is likely other diagnoses, or severe issues/problems that he had. None of which justify in any way his actions.

The media needs to stop running with labels that can have a very damaging effect on the lives of countless people, in this case with Asperger’s Syndrome, and stop giving us “expert” explanations of Asperger’s from Neurosurgeons like CNN’s Dr. Gupta, or doctors like Dr. Drew, who is a medical doctor and an addictionologist but not a psychiatrist or psychologist and instead here from learned experts – neuropsychologists, who can speak much more clearly about what Asperger’s Syndrome is and that it is not correlated whatsoever with planned violence.

It must also become more of a talked about reality that these mass shooters do not just “snap”. They cannot “snap” one minute and have all those guns, bullets, body armour, oh just ready to go now can they?

Does the media ever stop to consider that they need to stop sensationalizing these criminals, these (mostly in the U.S.) mass-killers who often, regardless of issues, reasons, etc, are firstly, not always mentally ill at all, as was pointed out by Dr. Michael Welner, a Forensic Psychiatrist on The View and a couple of other shows. He talked about how these shooters make a choice to avenge their grievances or failures in this manner because they can go from feeling invisible and unknown – uncared for or not cared about and unimportant (ways he says they often feel in their lives) to infamous in seconds with endless media coverage and they leave in the wake of their senseless (selfish) violence lost loved ones, many grieving loved ones, and a media-driven notoriety that lives on and fulfills their desire to be seen, to gain power when they feel helpless, to avenge what they are angry and/or depressed about – not that any of that is reason for killing anyone.

It is high time also that the media realizes that  not all of this violent behaviour is the result of mental illness. They talk a lot about psychotic breaks (not a symptom of Asperger’s by the way) and maybe for some of these killers (many are psychopaths don’t forget) they may well have a psychotic break and for some that psychotic break is actually the result of just having started or suddenly stopped psychiatric medications – or perhaps, there might be side-effects and damage being done to the brain by these drugs which many professionals say are the basis for chemical imbalances in the brain – not mental illness – it’s not a chemical imbalance in the brain, it’s the psychiatric meds that upset and wreak havoc on the chemcial balance, thus creating a chemical imbalance in the brain. A great book on this topic is Robert Whitaker’s “Anatomy of an Epidemic: Magic Bullets, Psychiatric Drugs, and the Astonishing Rise of Mental Illness in America.” (A rise in mental illness that several professionals associate directly with the rise in biopsychiatry, the notion (unproven psuedoscience) that “mental illness is a brain disease” that requires “psychiatric medication”.

I have not seen one U.S. media interview with an actual expert in Asperger’s Syndrome to provide a comprehensive understanding to people about why even is this shooter had Asperger’s it is not the reason he made the choice, that’s right, choice that he did to senselessly and selfishly murder those 26 people, may God rest their souls and be with their loved ones as they grieve the loss of each victim, gone to soon, and gone at the hands of a person who wanted to be known more for something unthinkable, tragic and heinous – someone who just didn’t care about anyone or anything but that – not even himself.

© A.J. Mahari, December 22, 2012 – 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.

 

 

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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.

 

 

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

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

2010 Up-date

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

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

What Does This Mean?

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

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

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

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

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

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

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

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

Is There Room For Me to Be Misunderstood?

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

Why?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Lesson I hope all will take from this

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

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

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

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

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

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

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

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

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The Pardox of Social Impairment and Profound Social Disconnectedness

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


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


 

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

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

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

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

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


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


 

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

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

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

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

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

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

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

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

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

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


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


 

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

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

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

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

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

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

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

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

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

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

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

© A.J. Mahari February 2005    


   

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


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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.

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AS - Executive Dysfunction

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