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The Paradox of an Inability To Change
Many people who have Asperger’s Syndrome, that I work with as a Life Coach, often report to me that the central thing they hear most often about Asperger’s Syndrome is how it can’t be changed. It is in the hard-wiring and it isn’t going anywhere. While it is true that one cannot get rid of Asperger’s Syndrome (AS) and that it isn’t “going anywhere” does it naturally follow logically then that there is something beneficial to be derived from such strong focus on an inability to change?
Who is it that wants change? Who is it that expects change? Who is it that is conditioned to think not being able to fully change something means that all change is impossible?
Why, do you think, is there such focus on Asperger’s Syndrome in terms of those diagnosed with it as not having ability to change? What is the message taken out of this fact, granted, but focusing extensively or even exclusively on this fact?
Does focusing on the reality that people with Asperger’s Syndrome will always have it leave room for hope? If so, what do you think that hope is for? What could that hope be about? I’d really like to invite you to leave your thoughts below in the comment section.
While it is true that AS is not something that one can recover from or stop having somehow that does not mean that people with AS cannot continue to learn and develop new skills, coping skills and/or compensatory skills – they absolutely can.
Now, of course, not everyone with Asperger’s is exactly the same at all. This means that how each person with AS will think about or even be aware about wanting and/or needing to learn new ways of coping and compensating will vary. And, while not a statement set in stone, it does appear, from my experience, as a Life Coach, an aspie adult, and a person who communicates with many with AS and has read a lot about it, that among all the variables and differences in the ways that all of us with AS manifest it, gender differences seem to have led many to conclude that the way that Asperger’s effects males isn’t the same way it affects many females. Tony Attwood mentions this in his book, “The Complete Guide to Asperger’s Syndrome”. So this isn’t just me speculating.
For those of us diagnosed in adulthood who didn’t have any way to have early intervention or support like aspie children do today, we have to be creative with how we go about coping and compensating. In most areas of the world there aren’t even services for adults with Asperger’s – as if today’s aspie kids won’t be tomorrow’s aspie adults joining the rest of us in this abyss of sorts.
I have come to realize in my life and my journey with Asperger’s Syndrome that there has been a lot that I have continued to learn. I have pushed my own limits and in many ways still do. I think, initially, after being diagnosed at the age of 40, which was 13 years ago now, I was trying to get rid of AS – as if eh?
However, for the last 11 years or so it’s really been much more a journey of gratitude for me. Gratitude for all I have continued to learn and compensate for mixed with an ever-deepening radical acceptance of the paradox of Asperger’s. A paradox that sees AS being both challenging and a blessed-giftedness as well. I continue to experience this rich and profound paradox of what AS seems to take from me, at times, or impose on me at times, and all that AS gives to me, blesses me with most of the time.
Hope lies within this radical acceptance and self acceptance. It lies within the re-framing of society’s penchant for pathologizing difference. Society defines Asperger’s as a disability. I experience it as a different ability. It’s a matter of how we think and what we choose to think about it. In fact, most people I’ve ever talked to and know now or have known who have Asperger’s, like me, wouldn’t want to get rid of it even if they could.
The focus of neuro-typicals and society in general on pathologizing our differences leads to what I would say is an over-focus on what is labelled an inability to change. Who is it that is wanting all of this change? Is it those of us with AS or is it society and neuro-typicals who seem to think that just because we are not “like” them – poor us kind of attitude.
It is from this realization that I continue to hope that parents of today’s aspie kids, with their interventions, services and so forth, aren’t hoping to change their aspie kids from aspie kids into neuro-typical kids. Because that is the one comparison, the one unrealistic expectation that likely is responsible for such focus on how AS is in the hard-wiring and how it cannot be changed.
However, as I will write more about in up-coming blogs, paradoxically, even that which cannot be changed cannot fully limit some change, development, and continued learning. We must be careful not to judge that change or to quantify it based upon neuro-typical expectations or comparisons.
The paradox of an inability to change in an of itself, from the inside out, for this adult with Asperger’s, is realized as an on-going active and engaging invitiation to not invest in or attach to expectations that others want to put upon me. It continues to be a challenge for me to nurture my own nature, regardless.
Change, on-going development, and continued learning that takes place within a positive framework from an awareness and practice of radical acceptance for what is grants a freedom for, and comfort with, difference that does not fight against itself.
© A.J. Mahari, June 8, 2010 – All rights reserved.
Presently Re-Doing This Site
Hi there! I just wanted to add a note in here that I am currently moving all the contents of this site from html pages to this new blog theme I just designed. So please bare with me while most content will be in this new blog’s design, some in the one step back web template I was using and still other pages, one make-over behind that. Such is web work. I have over 10 websites with hundreds, if not more pages. Time is not my friend, let alone organization in all of these changes.
Until I get all the content in this new blog theme in the left hand side bar you can find links to site pages not yet included in this new version of this site.
Hope you like this site. Hope you find things of interest here. I will be much more active on this site from now on. I have kind of left it for too long. I was busy worrying about all that I do online and, to be very honest, worried about being judged from having Asperger’s and having people say (and they do say it, believe, me) that because I have Asperger’s I must not be recovered from the mental illness I had and things of that nature. I have let that carry way too much weight and those days are now over. I am also a Life Coach. Some might think that having Asperger’s and being a Life Coach isn’t possible. This, I too worried about. But, no more! I realized I had been allowing myself to feel shame for who I am in total. That stops now! I believe in sharing all that I have to give on this topic and life experience as well. I guess I’ve been better at writing about and sharing online things that I recovered from, transcended and Asperger’s isn’t something that I can change, fix, recover from, or totally transcend.
I now accept, acknowledge, and appreciate the gift that this in my life as it so is the core of much of my “different ability”. We can empower ourselves, Asperger’s and all. We can take our strengths and do incredible things with them.
Please do share your thoughts. If you have questions or topics you’d like me to blog about please let me know on my new Asperger’s Syndrome and Adults Facebook Page. You can join me there by clicking the “like” button below and/or clicking on the page title below:
© A.J. Mahari May 30, 2010 – 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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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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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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