Function Versus Dysfunction and Asperger’s Syndrome
The very fact that Asperger’s Syndrome (AS) is largely described and defined as being (among other things) an apparently “inflexible adherence to specific, non-functional routines or rituals” is an enigmatic axiom that deduces in a rather disjointed and distorted way that, essentially, there is only one way to be in this world.
Why is that?
So much of who we are is defined and judged upon what we do or what we don’t do and not who we are at all. There seems to be an ever-growing list of disorders that suggest to me most everyone has “something”.
What does it mean to be functional?
Generally, in Neuro-Typical (NT) speak to be functional is to fulfill a specific occupation or role the way that some majority does and decrees it should be fulfilled which is fine if you are NT.
Being functional seems to also mean to have or perform a function that is judged as worthy, desirable, normal often made more valid (apparently) by how much one is rewarded monetarily for performance of said function.
Function also is defined by judged capacity to do certain expected things in some pre-determined and pre-expected ways. For many, especially those who are NT, it seems to me that function and the doing of said function(s) is (are) all tied into a prima facie raison d’etre. For most with Asperger’s being is raison d’etre enough, notwithstanding the often absent patently unquestionably visible apparent self-explanatory intractable impetus to do as everyone else supposedly does.
Asperger’s Syndrome is defined by professionals as being all about “dysfunction” and “impairments” by those who are Neuro-Typical. I don’t think any one of us with AS feels this way inside as long as we don’t allow this NT subjective evaluation to condemn our sense of self, self-worth, and way of being in the world.
When you consider the following definition of Asperger’s Syndrome as outlined in the DSM-IV ask yourself what is wrong with what is described below if you don’t impose your own way of being, your own expectations of others and your own judgment upon it. My point being that what is being described below is fact (as it varies for those diagnosed with AS) and that it is merely a different way of being in the world until you impose your different ways of being or you ascribe your way of being (for example the NT way of being in the world) as being the right way to be, to function, interact, relate, and act.
299.80 Asperger’s Disorder
Qualitative impairment in social interaction, as manifested by at least two of the following:
- 1. marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
- 2. failure to develop peer relationships appropriate to developmental level
- 3. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people(e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)
- 4. lack of social or emotional reciprocity.
(B)
Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
- 1. encompassing preoccupation with one or more stereotyped and restricted
patterns of interest that is abnormal either in intensity or focus - 2. apparently inflexible adherence to specific, non-functional routines or rituals
- 3. stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
- 4. persistent preoccupation with parts of objects
Not everyone is wired the same way. Not everyone is supposed to be the same. Not everyone has the same values or goals or objectives. Not everyone is caught up in the race of all it means to be living life.
Some, like many with Asperger’s, know what it means to be much more fully aware and involved in what life is – not the living of life, but the experience of being in life.
Executive Dysfunction – Is It Really The Heart of Aspie Dysfunction?
In the video below I talk about my experience with executive dysfunction and my philosophy about that.
I have come to recognize this and to absolutely value this about my own experience in my life. Experience that is interwoven abundantly into the tapestry that is how I am, who I am, and why I am as I am. This is functional and acceptable to me. I am not Asperger’s Syndrome. I am not just a person with Asperger’s Syndrome. I am who I am meant to be just the way I am Asperger’s and all.
Being in life does not require any judgment or evaluation of how one functions – what is determined to be the “ideal” in terms of functioning is to most with AS an infringing invading and rather foreign and most unnecessary construct of the masses.
Therefore, is an adult with Asperger’s Syndrome failing to function or is he or she functioning fully according to his or her brain hard-wiring and objectives? Should this be judged? Were we all ever really meant to be the same? I think not. Can those of us with Asperger’s Syndrome evaluate the merits of being Neuro-Typical any more accurately than those who are Neuro-Typical can evaluate the merits and worth of having AS? I think not. I know that what I know about being NT is limited and I don’t have the same experience of life or of living life that NT’s do; just as NT’s do not know the experience of having AS. We need to value every individual for being who he/she is as he/she is whether he/she has AS or is NT. We need not judge what we perceive or some have sought to define as each other’s ways of functioning
The fact is that it is judged daily by those, mostly NT who have a different mind-set, different objectives and have many social and relational values and desires that they hold in common. Such is not always the case with those with AS. In my own experience, I definitely only know one way to get anything done, that is the way that I do things according to what is “normal” and actually “functional” for me. My routine, how I do things or the things I don’t do or have interest in doing are only dysfunctional to those who are different from me, those who are NT and don’t have Asperger’s. It could just as easily be argued from an Asperger point of view that all that makes the NT world or planet spin is dysfunctional.
Add into this albeit arbitrary discourse at present that in the fullest extent of what it means to be engaged in life, to “be” a “being” in life is, I believe, grasped more deeply and fully by those with AS than it may be for most who are NT. NT’s are fully engaged in living this life as opposed to being in this life.
This difference, while it might seem irrelevant is actually the very cornerstone upon which function and dysfunction are defined by the masses or mental health professionals.
The very ways in which differences between what is labeled functional versus what is labeled dysfunctional are defined and applied are arbitrary and designed, for some reason that is beyond me, to attempt to ensure a defined and adhered to “sameness” that defies logic anyway.
The difference between functional and dysfunctional in many ways is truly in the eye of the beholder. It is in the mind of he/she who would judge. The fact is that we still, as a world, do not readily accept difference without judging it.
If thing or person A is different from thing or person B, who gets to decide which one is better, more desirable, to be more valued than the other?
I have suffered a lot and been very hard on myself with dire emotional consequences for having Asperger’s and subsequently from the negative feelings I have associated with all that is defined to mean from the outside.
If I hadn’t worked it through I’d still believe I was weird, not normal, inferior, less than, stupid, useless, lacking, and I’d still be tearing myself down and labeling the way that I do function as “not good enough”.
I now know that having Asperger’s, is for me, very much about being free of so much that ties NT’s to the “party line” of what life, let alone living life is “supposed” to look like and be about.
The more I bought into the judgment of others — mainly from my family of origin’s expectations of me growing up that I internalized as devaluing of who I was and that I have carried as internalized shame for so many years — the more I was unable to function in what functioning is and looks like to me and for me.
For those with Asperger’s Syndrome if you just accept that you are “dysfunctional” without challenging this it can lead to a very poor self image, very low self-esteem and endless pain and inner-turmoil that can make relating to those on planet NT even more complicated than it may already be for you.
Those with Asperger’s Syndrome function as they are meant to just as do those who are Neuro-Typical. A simple conclusion that circumvents the need to judge, compare, or label one dysfunctional and the other functional. We can learn to understand each other and to celebrate even our most complicated differences.
© Ms. A.J. Mahari June 27, 2005 – additions February 6, 2009 – all rights reserved.
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How Should NT’s Treat Those With Asperger’s Syndrome?
How should neuro-typicals (NT) treat those with Asperger’s Syndrome (AS)? Whose responsibility is it to ensure that communication is constructive and/or clear? Is it all up to those who do not have Asperger’s Syndrome to make things somehow better in relating for those with Asperger’s?
Is it the responsibility of those who are Neuro-Typical (NT) to ensure that the person (or persons with AS) that they are relating to feel comfortable all the time? What are NT’s supposed to do? What NT’s shouldn’t have to do is take full responsibility for any and all relating communicating, or socializing with an adult with Asperger’s Syndrome.
I received several emails on this subject from NTs, that in many different ways were all asking, How should you treat people with Asperger’s Syndrome? What should we do?
Let me respond, firstly, by saying that how those with Asperger’s Syndrome should be treated is not necessarily so different from how each and every one of us would be best served to strive to treat each other generally.
The ways in which we all need to strive to treat each other include being kind, caring, compassionate, understanding, non-judgmental, with respect and dignity, and as inclusive as possible and so on.
With particular respect to those with Asperger’s Syndrome the first thing to consider is whether or not you are interacting with a child, teen, or adult. The way in which you interact with a child or a teen varies
greatly, generally, and this is true of those with AS also.
Of course, relating to an adult, then would differ somewhat (AS or NT) from the ways that we relate to children or teens. Adults, even with AS, have much more responsibility to be a part of the building of the
foundation from which interaction can take place between two adults, whether that’s one NT and the AS adult or two AS adults or what have you.
While there are definite and varied styles and degrees to which socializing, or relating is accepted, understood, or wanted by those with AS, it is important to keep in mind the individual strengths and weaknesses of the person you are wanting to relate to. This would be the case whether someone has AS or not.
While there is no doubt that in most, if not all cases, of adults with Asperger’s communication with others in a relational or social context can be stressful, difficult, and often time-consuming, I don’t believe that those who are NT should be expected to bend over backwards all the time to try to ensure the comfort level of the person with Asperger’s.
Each adult with Asperger’s has to find his or her own way to comfort within a relational context. This can be done. The degree to which each adult with Asperger’s will want to relate or how often or how intensely varies greatly.
Personally, I do know that those who get to know me or who are closest to me do have to learn about what Asperger’s is and what that means and then learn more specifically how Asperger’s manifests in my relating and communicating. I think that just as those of us with AS continue to try to learn more about what NTs want and need and why, the same is true of NTs needing to learn more about what those of us with Asperger’s (individually) need and want and how it is that we process information differently, the reality of social challenges, and the ways in which having Asperger’s does impact relating.
It is important for those with AS to learn how to open up and trust a friend or partner with the vulnerable places where he or she may need to explain more to an NT to be understood and/or ask for help or information about how to best give the NT what they need. I ask those that I relate to if I’m being understood and I listen to them when they give me feedback as to what they may need that I don’t know to give without being cued to do so. Being open to being cued and then doing
your AS best to give is also very important.
Ideally, compromise and openness to understanding how the individual person you are relating to with AS would feel most comfortable is a very welcome and kind thing to keep in mind. Just as those with AS, wherever and whenever possible need to continue to learn how to reach out to those who are NT and try to find some common ground from which to relate. This ensures that both parties have opportunities to be heard, understood, and feel included and respected.
There may well be some concessions that will help make relating to someone with Asperger’s more accessible than not realizing that some more give (at times – yes maybe often) may be necessary on the part of those who are NT. However, that said, I personally believe, as an adult with Asperger’s myself, that it is my responsibility to work at finding and balancing my own comfort level in interaction with others. I do not believe communication (especially in friendships and relationships) will be effective for everyone if only one person is making all the efforts at creating a comfortable interaction.
Often relating to those of us with AS will require more patience on the part of NT’s. It would be counterproductive to apply pressure or to have certain expectations as to how someone with AS will communicate or relate or socialize with you (NT’s).
While that kind of consideration and effort is kind, caring, and compassionate and has its importance for those with AS it is important that NT’s (and those with AS) realize that the NT is not wholly responsible for all things communication-wise and so forth. Bridges must be built and responsibility for interacting must be shared to whatever level of sharing those with AS can achieve. Some with AS will be much stronger at this sort of thing than others.
So, basically, being kind and understanding and accepting are very important. However, remembering that you are not responsible for any entire interaction/communication/socialization with an adult with AS and that treating them like the person that they are and with respect is the most important thing.
Sometimes, for many with AS, the more intense any relational or social experience is the more stress they may have and the more they will have to deal with their difficulties. This is, however, something that most just want to be accepted in spite of for who they are. Most with AS do not want to be treated in such a way that would see the NT denying their own needs and wants and comfort needs and so forth.
We come from different worlds in the relational/social spheres and it is important to be as inclusive as possible and as accepting as possible. Patience always helps too. Require as much reciprocity as the adult
with AS, in your life, is able to give.
Just as those with AS want to feel some comfort level in interacting with others (and this is often difficult and stressful) those who are NT need also to ensure that they can find a comfort zone when relating to someone with AS.
We are different, just as are all individuals different in general too. Each one of us as human beings requires that we be seen for who we are and accepted for who we are. This applies to those with AS and those who are NT. This is common ground upon which to build foundations of communication.
© Ms. A.J. Mahari May 22, 2005 – with additions February 6, 2009 – All rights reserved.
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Reflections on an Asperger Diagnosis In Adulthood
Learning that one has Asperger’s Syndrome as an adult is a different kind of challenge than those who find out with systemic and parental support and guidance in childhood. It gives one pause for much reflection.
Having Asperger’s Syndrome (AS) and knowing about it in childhood is one thing and being diagnosed as an adult is another. Trying to cope with AS after a life time of experiencing its many challenges and having not known the reason for its impact in my life has brought to the process a lot of reflecting and grief for me.
One of the most difficult challenges of dealing with an AS diagnosis in adulthood, for me, has been the reality that while I was finding all of this out there were no services to help in the necessary transition, adjustment, or understanding of what it will all mean in my life and for my future.
There is much to reflect upon when it comes to my experience of learning that I have Asperger’s Syndrome at the age of 40.
The struggle and process of accepting AS, understanding how it plays out in my life, and affects my life generally is a gradual, still, unfolding one. This is especially true in terms of working hard to meet my partner (NT) in the middle of all that is complicated communication and relating.
One of the biggest challenges, in adulthood, is how to not only further educate yourself, after being diagnosed with AS, but the responsibility of informing and educating friends, family, and significant others so that relationships cannot only be maintained but enriched, viable, and as painless and stress-free as possible.
In my own life I have found that the more I relate in my primary relationship, the more I learn about how Asperger’s actually impacts my ability to relate. This is important to learn, to know more about and understand. However, with each new revelation and this further understanding comes pain, sometimes embarrassment, always grief and tears.
There is a natural tendency to want to protect that which one may feel leaves them so different, vulnerable, weak, or lost and yet for an adult with AS, it is crucial to trust your significant other with this tender and vulnerable area of lack of knowing or understanding relationally as NT adults relate and communicate in order to learn more and be able to push the limits of your ability to in fact relate, communicate and learn to negotiate.
The most difficult area, where I find this really impacts me, in terms of my relationship centres upon trying to learn to be more flexible, to manage the inevitable stress and agitation that result from a lack of unpredictability and/or changeability as well as learning what negotiation is and looks like. I may not always get there but when my partner is patient and I am able to follow through with my own communication process and differences in this area, I find that we can meet in some middle place that allows us to hear and understand each other and results in us reducing the amount of conflict between us.
Generally, then, and to summarize what I am reflecting about here, if you are, like me, an adult who is diagnosed with AS at an older age, it is very important that you give yourself time and space to accept this, to grieve and feel about it and to find ways to bridge the differences and gaps with those neuro-typicals (NT) in your life so that you don’t have to be so isolated.
I am learning through just living this and a process of trial and error that healthy risk, trust in myself, and in those I know, and in my partner mean that I can celebrate my differences, rejoice in the gifts of AS and not lose out in all other areas of NT life. I choose to step off of my AS (autistic) planet and onto the NT planet more often than ever before now. I also, at times, straddle both planets. There are times when just being on my AS planet also is very necessary. Making these shifts isn’t easy but the more I choose them the more I am able to better cope with them.
I have learned, that in fact, to some degree, I can have the best of both worlds. This is not the case without agitation, some stress, and pain. The key here, I’ve found, is learning to tolerate and cope effectively with the agitation, stress, and pain.
Though I can and do reach out to others and to my NT partner in ways that require me stretching and reaching and in ways that don’t feel first nature to me, I also very much have come to accept myself as I am. This acceptance is still growing. It is imporant because I had to come to learn and really know that it is okay to be different. I am still likable and lovable even though for many and for my NT partner I am (at some times more than others) quite different. In fact my NT partner even values some of my eccentricity and quirkiness. There is so much room for bridges to be built. Don’t let the fact that you have been diagnosed with AS (as an adult or at all regardless of age) leave you believing that you can’t learn to find your own way to the kind of communication and relating needed to share time and space and feelings with others.
It is my conclusion, upon this reflection that what I have to endure at times to be in a primary relationship and to have love and companionship in my life is well worth it. There are times I still feel pretty green and fairly lost but if I allow myself to be there and not judge myself I find I can navigate those waters, in time, quite effectively and with positive results.
There are times I really enjoy a lot about space, aloneness, and what it means to live in a more natural AS/autistic realm. However, I don’t have to be totally there.
Even those of diagnosed in adulthood and without services can learn to relate and function in ways (that while they feel foreign) allow us to know what deep connection is about (even if we need respite from it and it is stressful more often than not) and to know what it is to love and be loved.
There is life after the AS diagnosis in adulthood.
There can be relationships and relating. Educating oneself is of primary importance. Also of utmost importance is the realization, understanding, and acceptance of ourselves and the reality that while AS makes many things in life somewhat more complicated it bestows upon us gifts and skills that we must celebrate and fulfill our potential with, through, and because of.
© Ms. A.J. Mahari 2004
Diagnosis of Asperger’s Syndrome In Adulthood
More adults are being diagnosed with Asperger’s Syndrome. More adults are finding out they have Asperger’s in some part likely due to the explosion of information about it on the internet. For some adults, however, they are getting diagnosed with AS after they have a child who gets diagnosed with AS.
An issue that comes up over and over for many adults is why should I bother to seek a diagnosis at my age?
It’s a good and fair question to which there isn’t really any one correct answer or globally compelling reason to seek an official diagnosis.
There are many adults who know that they have Asperger’s Syndrome(AS) inherently after reading information on line or in a book or hearing about the experiences of someone else with Asperger’s. Many do not need or ever seek an official diagnosis.
There is a growing movement within the on-line AS community that supports self-diagnosis based upon peer acknowledgment or validation. This peer acknowledgment and/or validation takes place when an adult who believe they have AS talks (emails, chats) with others who have AS and the commonality of experience becomes irrefutably obvious.
I have experienced both, actually. I have experienced being told I didn’t have Asperger’s Syndrome, then an actual diagnosis, and then further to this I have experienced more peer validation from taking to other adult Aspies who mirrored so much of my life experience and how I have felt through it and as the result of it. Should one way of knowing that I have AS be more important than the other? I’m not so sure.
I believe that many people these days are coming to understand many things about themselves via the internet as well as books. However, online one can do much more than just read information. There are email lists, message boards, and places to actually chat that facilitate the coming together of Aspies who might not otherwise ever cross each other’s paths and learn from one another.
If you can seek a diagnosis because you have coverage for the assessment or you can afford to, then of course, it makes perfect sense to do so. If, however, you can’t access services either due to lack of insurance coverage or trained professionals in your area, I believe that what you know about yourself is more often accurate than not.
The reality of seeking out a professional assessment and diagnosis, for women with Asperger’s Syndrome, is even more complicated and difficult than that of men. Most of the diagnostic criteria have been built upon clinician’s experience of making diagnoses primarily of males. Women with Asperger’s do not necessarily present in the same ways that most men do. It is not uncommon that women are misdiagnosed and sent way more often than there male counterparts into the Mental Health System. Mental Health Systems are not designed whatsoever to facilitate the kind of support someone with AS requires.
Coming to the knowledge that one has AS or being diagnosed with it officially in adulthood does present different challenges than those who find out in their childhoods have to face.
Children these days are benefiting from more and more intervention to teach them how to strengthen certain areas where some skills are lacking. They are being “trained” in how to think and behave like Neuro-Typicals. Some people believe this is a positive thing. I’m sure in some ways it can have positive benefits. However, there are many who wonder about the effectiveness of this approach and also feel that by trying to change so much about a youngster with AS there is not the acceptance level for those who are on the autistic spectrum that there needs to be and should be.
There are definitely challenges to being an adult Aspie. Some can be painful or frustrating and isolating for sure. However, while I might wish there were a few more skills I was taught as a child to manage relating, for example, when I was younger, there is a lot about me that I would feel very sad about having had changed. A lot of who I am has been shaped and molded to some degree by the fact that I have AS. Some of that is not as positive as the rest but I strongly believe that the more I find my way in life, my way, the better off I am.
I am glad that I was diagnosed. I am glad that I know and understand and continue to learn more about what having Asperger’s means in my life and in my relating to the world. Knowing this has increased my ability to love myself and accept myself for who I am and to stop comparing myself endlessly and unfavourably to others.
To this end then, knowing that one has AS is useful information and can be very important in terms of helping an adult with AS learn to make necessary adjustments to cope with the rest of the world and to relate to it in ways that make a little more sense to it.
So, seeking a diagnosis regardless of age for any adult is likely worth it. However, there is almost equal value in knowing what you know about yourself. Through sharing your experiences and difficulties with others on line you can truly learn to assess for yourself if you fit the AS profile or not. If you are a female, however, please look for other women with AS to talk to and read up on how AS can look and be different for females.
Knowledge is power and this applies to understanding ourselves better. If you can get formally diagnosed it’s a good idea. Knowing that you have AS and learning to understand that and the way that it impacts your relating, relationships, and overall functioning and way of relating to the world in general is a very valuable thing that can only add to your self-acceptance and self-understanding in time, in ways that will enable you to find more peace and contentment in life.
© Ms. A.J. Mahari 2004 – addition February 2009 – all rights reserved.
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Welcome To Asperger’s Syndrome – A Different Ability
Welcome to Asperger’s Syndrome – A Different Ability. I am a woman who was diagnosed at the age of 40 with Asperger’s Syndrome. I think it is important to talk about this. It is important for me to do my part in contributing to more understanding of Asperger’s Syndrome, generally, but specifically in those diagnosed in adulthood and also with a focus on the experience of women with AS.
I think of Asperger’s more as a difference – a different ability rather than a disability. I experience Asperger limitations to be more like guideposts to keep me where I need to be so that I will do what I need to do – what I am supposed to do – contribute from a place that is a place of strength. Strength that comes from the areas in my life where I am not as strong as I’d like to be or as others may well be – strength that comes from continuing to be a student of the lessons of difference. A student in the lessons of difference who has come to realize that polarized thinking about difference is a problem for all of us in general in life and specifically, for those with Asperger’s and those who are Neuro-Typical.
In my experience and philosophy of life as someone with Asperger’s Syndrome I find it important to normalize as much of my own experience as possible. I do not see much positive in pathologizing it. I think it is important for those of who have AS to realize that while we may have certain limitations as a result of AS, even Neuro-Typicals (NTs) experience limitiations of some kind in some aspect or other of their lives. So, again, AS, to me is about difference, not a difference that is less than or negative or to be qualified really, just a different way of being – a different ability.
© A.J. Mahari February 6, 2009 – All rights reserved.
A.J. Mahari is a Life Coach who, among other things, specializes in working with those with Asperger’s Syndrome and their partners, relatives, or friends. A.J. has 6 years experience as a
Life Coach and works with clients from all over the world.
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Being Diagnosed with Asperger’s Syndrome as an adult
A.J. Mahari, is a woman who was diagnosed with Asperger's Syndrome in adulthood. She writes about Asperger's Syndrome from her own life experience, with among other things, a particular focus on Asperger's in adulthood and Asperger's in females.
Finally
adults are being diagnosed with Asperger’s Syndrome as it becomes much
more understood. There is still a gap in professional services between
Developmental Disorders and Mental Health Disorders. These health care
systems are planets that orbit each other but fail to acknowledge their
overlapping universe. The result is a lot of
pain and misunderstanding for too many adults, and maybe more women
than men.
By Barbara L. Kirby, Founder of the OASIS Web site writes:
“Asperger
Syndrome or (Asperger's Disorder) is a neurobiological disorder named
for a Viennese physician, Hans Asperger, who in 1944 published a paper
which described a pattern of behaviors in several young boys who had
normal intelligence and language development, but who also exhibited
autistic-like behaviors and marked deficiencies in social and
communication skills. In spite of the publication of his paper in the
1940's, it wasn't until 1994 that Asperger Syndrome was added to the
DSM IV and only in the past few years has AS been recognized by
professionals and parents."
To read more about Asperger’s Syndrome you can visit my website's
Message Forum and also for the DSM-IV definition you can go to What Is Asperger’s Syndrome.
Asperger’s Syndrome is still diagnosed way more often in males than it is in females.
“According
to Tony Attwood and other professionals in the field, women with high
functioning autism and Aspergers may be an underdiagnosed population.
If this is true, some of the reasons may be attributed to gender
differences.” writes Catherine Faherty in an article entitled
Asperger’s Syndrome in Women: A Different Set of Challenges?
In
recent years, Asperger’s Syndrome is being recognized and diagnosed in
adults and not just in children. Many adults who have been misdiagnosed
with a host of psychiatric labels are finally being recognized as
having this developmental disorder. While AS is not a psychiatric
disorder, it can cause issues to arise that create other
types of challenges that then threaten the overall mental health of the
adult with AS.
Given
the reluctance of many professionals to recognize Asperger’s in adults
many adults have suffered needlessly. There still is a gap between the
Mental Health delivery system and the Developmental Disorders delivery
system where there should be a healthy over-lap so that adults who were
misdiagnosed with a host of psychiatric issues until their AS was
recognized and diagnosed have some recourse to work through the damage
that is done when one is misdiagnosed and not properly treated. In many
areas of the world, there is still a lack of professional counselors to
help adults with this diagnosis and the challenges that they face in
their lives.
The
greatest sources of damage for adult Aspies who are diagnosed only
after nightmare involvement with Mental Health Systems results from the
false-hope given, the inappropriate, unhelpful and often damaging
medication that they are saddled with, the unrealistic expectations
placed upon them for change along with the pathologizing of what is for
“normal” for those with AS. Unlike many mental health disorders,
Asperger’s with its etiology in physiology is more intractable than
disorders based in the emotional realm psychologically.
Kicking
around in the mental health system, as many adult Aspies have, can and
does do its own type of damage and has for many adults only added
insult to injury. Most adults who are diagnosed with AS, no matter what
process they have to work through in understanding and self-acceptance,
find the diagnosis a meaningful revelation in their lives. Substantial
enough in scope, is this diagnosis, that it can mean the difference
between a life of self-recrimination, self-loathing, self-hatred,
isolation, alienation,
or an increased understanding of self that enables those diagnosed with
AS to make much more sense out of their lives and experiences.
This
leads to a much greater chance for self-acceptance, self-worth,
self-love and esteem. With this insight and understanding as to why
socialization, communication and relating are often so challenging
adults with AS can learn to “join in”, learn to feel less alienated as
they learn new and different coping strategies that allow them to
compensate for the areas in relating that can make
life very difficult and lonely.
Inherent
in each of most of us is a desire to love and be loved. Connection is
just as vital for an adult with Asperger’s as it is for those who are
Neuro-Typical (NT) and don’t have Asperger’s. It may not look the same
as most NT’s desire for, or ways of, connecting. Those with Asperger’s
also have a wide range of emotions. What is substantially different
from the feelings of NT’s is the compromised ability to express those
emotions.
The
parents of children diagnosed with Asperger’s now, are able to find
support and services for their kids that can teach the Aspie Kids a lot
of skills and compensatory strategies that most adult Aspies have not
had a chance to learn or have any support around.
To
come to a diagnosis of Asperger’s Syndrome in adulthood, as I did, at
the age of 40, can initially be both a relief and a nightmare. The
relief, as I experienced it, had all to do with finally understanding
so much about all that was so difficult and painful in my life.
The
nightmare was the process it took to integrate how much I had suffered
without an understanding of why I had been so alone (always felt
different) most of my life and why trying to relate to others or be
social was extremely difficult most of the time, if not impossible, for
me at other times.
Without
any understanding of what was really behind most of my relational
difficulties I was left to feel, time and time again, like I was “less
than”, like a failure. I experienced this as being “unlikable and
unlovable” Feeling this way lead me to feel very alienated. I had spent
most of my life frantically searching for what was “wrong” with me. My
family, peers, and society at large gave me endless messages that I was
not okay.
Not
understanding this very pervasive aspect of myself left me unable to
really understand who I was. Without this knowledge of my “self” I was
lost and in a great deal of pain for much of my first 40 years of life.
Not knowing why I was the way I was, the way that I am, still, caused
me to try to be whatever others told me I “should” be. This was
torture. This is the epitome of being lost. I was alienated from my
very self by the expectations and judgments of others.
My
lack of being “what others expected me to be” along with my lack of
knowing what others have always expected that I “should” know based
upon my age or intelligence was literally crazy-making.
I will be sharing a lot more of my personal experience here in future articles.
I
am still in the process of evolving as I continue to attempt to reach
the kind of self-acceptance that allows for consistent hope and
optimism and a meaningful personal peace.
© Ms. A.J. Mahari February 2004 with additions February 6, 2009 –
All rights reserved.