autistic spectrum

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

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

 


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

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

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

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

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

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

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

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

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

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

 Source: CNN Health


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

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

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

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

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

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

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

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

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

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

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

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

© A.J. Mahari, February 12, 2010

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Asperger’s Syndrome – Living in Another World

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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