Asperger’s Syndrome – People are Not Stereotypes
The diagnostic criteria for Asperger’s Syndrome, like so many other “labels” is so stigmatizing and stereotyping. As if all people with any given “label” or any group of people, regardless of why or how they are grouped together are a) all the same and/or b) all-good, or all-bad – c) acceptable or not acceptable based upon those who would judge others by how much of themselves they see mirrored back to them, or not. Each and every human being is first and foremost an individual human being. Why is it that so many people lump all people with Asperger’s together like we are all the same? We aren’t. We don’t all experience Asperger’s the same either.
People with Asperger’s Syndrome (AS) are different in some ways from Neuortypicals (NT’s). But, so too is each Aspie different from other Aspies. So too is each NT different from the next person. We all have strengths and weaknesses. Life is about radically accepting that and learning that weaknesses and vulnerability are strengths too. Sometimes what one thinks is his or her strongest strength or quality may well not be. Life is about so much paradox. The more we can find a balanced middle-ground the better off we will all be collectively and individually. If we, those with Asperger’s and NT’s meet in the seemingly-impossible middle-ground that stands all around us, in that space and from that mind-set we can learn more about not only tolerance of difference but respect and celebration of difference – an acceptance of difference that does not judge one way of being as better than another.
Make peace with your experience with Asperger’s Syndrome in your life. I have. Self-acceptance and self-love and understanding are so very important. A.J. Mahari, herself, an adult with Asperger’s is also an Author of over 20+ Ebooks, a Life Coach, BPD/Mental Health, Asperger’s, and Self Improvement Coach. Mahari makes the point that no one is perfect and that there is no such things as normal. The construct that neurotypicals are normal and Aspie’s aren’t is a polarized and arbitrary one at best. It doesn’t have to mean anything to you. You don’t have to be defined by this dichotomy or adhere to it either. Free yourself from feeling “less than”. Celebrate who you are and know that difference is just that – different. It doesn’t have to mean anything else.
Inside My Asperger Experience Audio
Asperger’s Syndrome and Adulthood From The Inside Out Ebook
Asperger’s Syndrome, and yes I have Tourette Syndrome (TS) too, which often seems to “go with AS” and is something that I never admitted online before. I guess it took me a bit longer to accept and come to terms with that and to be as okay with and about that as I am anything else about myself. Why? Simply because I am no more defined in the totality of what it is to be human and to be me by Asperger’s or Tourette Syndrome than I am by the sum total of all that makes me who I am.
© A.J. Mahari, March 27, 2011 – All rights reserved.
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Taylor Morris – Autism and Asperger’s Advocate – Interview A.J. Mahari’s Psyche Whisperer Radio Show
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
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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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.
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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