Misdiagnosis of Asperger’s Syndrome in Lorene Amet’s son’s life lead to years of dangerous psychiatric medications that caused him to end up being mentally ill as a result of the psychiatric drugs and their side effects. People need to start educating themselves against the medical model of psychiatry – Biopsychiatry nothing more than flawed theory put forth as “real” science when it is “junk” science – Big Pharma money to sell more drugs and the welfare of those in need of help be damned.

Asperger misdiagnosed as mental health disorder from Lorene Amet on Vimeo.

by Lorene Amet

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

 

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

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

 

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.

 

 

 

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

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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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On Monday September 20, 2010, at 7pm EST, Author and Life Coach, A.J. Mahari, herself an adult woman with Asperger’s Syndrome interviewed Taylor Morris, who is a 17 year old woman, with High Functioning Autism, a straight A student, and advocate for Autism and Asperger’s Syndrome.

Taylor is very articulate young woman and she has made several video. She has an incredible following of her videos. Taylor describes and explains a lot about her experience in life as someone with Asperger’s Syndrome in ways that can help people with Asperger’s better understand it and also helped their loved ones better understand. The more we can understand and respect each other across the differences of what it means to be a “neurotypical” or a person with Asperger’s Syndrome the richer all of our lives will be.

Asperger’s Syndrome, as I know from my own life, and as I stress on my own Aspergers and Adults website is a different ability – not a disability. It brings with it challenges, but, also many blessings and gifts. Please watch Taylor’s video below and read the post re-posted here from her blog at Meet Taylor Morris, entitled, “My Social World: Inside an Autistic’s Psyche” You can also watch more video from Taylor on The Psyche Whisperer Blog

© A.J. Mahari, September 20, 2010

 

 

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My Social World: Inside an Autistic’s Psyche

By Taylor Morris

Just before class I hear a necklace jingle around the neck of a pretty girl. She is gossiping with another pretty girl, who is twirling her pretty hair and talking about the awesome party where some other pretty girl ruined her dress with a beer stain. At the other end of the class, I listen to yet another pretty girl complain to her pretty best friend about how her make-up wasn’t done just right — she is not pretty enough. Meanwhile I’m on my own, at my desk, looking at my calloused hands and unkempt nails thinking: “The jewelry, the hair, the clothes and the make–up — it’s all their social games. Their value, their conversations, their lives. How do they devote so much time and money to that? How do they know just what to say to get “groupies” to follow them?” I sigh and shake my head, thinking of how I don’t own a dress, how I wear the same earrings every day, and how I never seem to understand when they speak in what seems like code. With this, I’m once again reminded of how I’m an unwitting member of a social “game” I don’t really know how to play. Having an Aspie mind is a hard-enough social challenge; add to that the complexities of a high school girl’s social world and hierarchy and you have just added insult to injury.

Over the years I have learned to associate the word “social” with scenes like these. I never have understood the social culture people practice. I just don’t have the ability to “sense” like neurotypicals because my thoughts are literal, not intuitive. My mind is heuristic, so I behave in accordance with what I see and directly experience. I can’t “sense” whether or not I’m winning over a person. I have to wait and see how they treat me in the weeks after I have met them. This creates a whole new challenge in meeting people and making friends, especially girlfriends.

However, I have learned to use my style of mind to my advantage. For example, I use heuristics to decide which people I should and should not try to be-friend. I know from experience that girls who hang out in large groups of other girls tend to be mean to me. Because of this, I know to not try to connect with them. Same goes for girls who wear shirts worth more then my earrings, girls who wear more make-up in a day than I do in a year, and those who match their entire outfit a bit too perfectly. This may seem ridiculous because everyone knows someone who wears a mountain of make-up but is still very nice. Even so, over the years I have found that these heuristics work well. Many of the people I have excluded often did end up being the exact kind of people I want to avoid. I know these “rules” in deciding who I will try to interact with are polarizing to an extent, but they are how I have used my mind to find my way through a social game. Using this method, I have successfully identified girls who became my best friends. They don’t judge me for being slightly different and don’t hold it against me for not having the best sense of style. They have judged me by my character, and that is all I ever really wanted.

 

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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.

 

 

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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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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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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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.   

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

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

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

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

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

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

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

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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.   

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

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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    

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•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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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.

 

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(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

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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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