Aspergers Syndrome and Adults » aspie

The Pardox of Social Impairment and Profound Social Disconnectedness

A.J. Mahari — Fri, 05 Mar 2010 20:32:32 +0000

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.

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

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.

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

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.

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

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

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

A.J. Mahari — Fri, 12 Feb 2010 05:27:21 +0000

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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Is Self Help Effective For Asperger Syndrome?

A.J. Mahari — Sat, 06 Feb 2010 02:50:22 +0000

Asperger Syndrome is an Autism Spectrum Disorder (ASD). It was first included in the Diagnostic and Statistical Manual (American Psychiatric Association) under the general category of Pervasive Developmental Disorders (PDDs) in 1994. It is named after Hans Asperger, of Vienna, who wrote about this cluster of characteristics as early as 1944. Are self help principles, ideas, and practices effective for people with Asperger’s Syndrome?

“Many individuals with Asperger Syndrome exhibit extensive knowledge of a specific interest and therefore are capable of major accomplishments.
Although Asperger Syndrome can be first detected in childhood, many individuals are not diagnosed until well into adolescence or adulthood.
The cause of Asperger Syndrome is not yet established, but a leading theory at this time points to genetic causes. Many individuals diagnosed with Asperger Syndrome identify similar traits in their family members.”

Source: Aspergers Society of Ontario

You might think well, if Asperger’s Syndrome is genetic and on the autism spectrum and since it is a pervasive developmental disorder that that may mean there’s nothing that can be done to help someone. For those of us diganosed in adulthood there are even more challenges because any chance for early intervention, counselling, psycho-education, social skills training and so forth has been missed. And, once in adulthood there are very few places one can go for this assistance, if you can find anywhere at all that works with adults. Most of the resources used in treatment and managing Asperger’s Syndrome (AS) are in place only for those under the age of majority. So, are you just stuck with it? How can you change anything when there isn’t a way to actually get rid of it? Mind you, most aspies I know, and I include myself here, would not want to get “rid of it” even if it was possible to do so.

Not everyone diagnosed with Aspergers is the same. Not everyone diagnosed with Aspergers has all the traits or has certain traits as strongly as the next person. It is important, if you are an adult with AS, to look at what your strengths and weaknesses are. For many with AS common strengths include a high intelligence and strong interest in a least one area of narrow focus. While this narrow focus can have its drawbacks it can also be harnessed as quite a strength in many ways. An obvious and quite common so-called weakness for those with AS is social impairment. However, I have come to realize that the way that is defined is very genernalized. Each one of us needs to examine our own abilities and challenges in this area particularily. I say so-called because to the degree to which one is socially impaired or not can depend quite a bit on your own idea of what that means for you as an individual.

One of the major aspects of self help that can be of great assistance to those with AS is learning more about self-acceptance and respecting differences, to the degree that you understand the ways in which you are different from the average NT. Even if NT’s around you don’t understand or respect your differences its important to not take on the judgment or misconceptions of those who cannot understand what its like to have AS. NT’s are often very confused by a lot of the ways in which we think. Just as those with AS find many of the ways that NT’s think a little other-worldly too. It is equally important to realize that a lot of what we do differently, or the ways in which we may think differently, can be positively framed in realizing your capability to function in and through what is a different ability.

I have come to realize in my own life that having AS doesn’t mean, for me in my life, that I am disabled. I am differently abled. I may have many differences in how I function – known as aspie lack of executive dysfunction – which I have found through my own self help efforts can really be transformed into different ways of functioning. Again, the key is changing the way you think about difference and being the one that is different. What NT’s call dysfunction can be turned into your own undersanding of many different ways that you actually do function – this aspie functionality is just not well understood by NT’s and of course is not the same as NT functioning.

You really can create change in your life like anyone else – like your neurotypical (NT) counterparts. Change for some with Asperger’s means personal growth and evolution in understanding and learning for many. For some it might be more about finding productive and workable compensatory strategies. Social strategies are also important to explore and implement. They can take practice. However, if you learn to be kind to yourself and avoid judging yourself you will find that what you practice and what you apply from self help philosophy can and will be very helpful.

As a life coach I have learned to apply self help strategies in my work with many clients with Asperger’s Syndrome. I have, of course, also learned to apply much of these same self help strategies in my own life. The first step in ensuring that you can make the most out of the self help you can learn much more about is to have an open mind about how much you can empower yourself to find ways to cope and ways to compensate for what isn’t exactly entirely changeable. Adaptation is a key facet of applying self help to your life journey with Asperger’s Syndrome.

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Help For People With Asperger’s Syndrome?

A.J. Mahari — Mon, 04 Jan 2010 22:10:31 +0000

Many people who know people with Asperger’s Syndrome, or have someone with Asperger’s Syndrome (AS) in their families write me exhausted and exasperated as to what to do to help the person with AS in their lives. Can you help someone with Asperger’s or is the help just perceived as too stressful and too intrusive? Do you feel frustrated and like your every effort to help the person with Asperger’s in your life just makes things worse? As a life coach, it has become apparent to me that this is a common experience for many a neuro-typical (NT).

Neuro-typicals need to understand that they really cannot truly know what it is like to have Asperger’s Syndrome. That’s a good place to start. Sound too simplistic or obvious? It is an important distinction to keep in mind because you might think you are offering someone with Asperger’s help based upon what you would experience as being helpful.

What most neuro-typicals find helpful or recognize as support is, more often than not, not the same for people with Asperger’s. If you approach the person with AS in your life from your own perspective without consideration of the differences in perspective, experience, and interpretation of those with AS the results will often yield more frustration for both parties involved.

It is also important to not put your own expectations upon your loved one or friend with AS. For many people with AS the help, caring, and/or support of others feels intrusive to them. It can be experienced as being a major stressor. It can lead a person with AS to retreat more inside of him or herself as a reaction to the ways they know they are different. The very things you may be stressing in trying to help may in fact leave the person with Asperger’s feeling judged or criticized because they do not have a common reference point with you from which to share in the reality that you care and are trying to help them.

As someone with Asperger’s who continues to push all my limits in learning and mapping aspects of life and relating where I have a different ability – commonly referred as “disability” by NT’s, I myself, have experienced others trying to help me at times when there wasn’t any help they could really give me. We didn’t have a shared perspective, understanding, or strong enough commonality in our experience for a meeting of the minds that could prove to be beneficial versus frustrating. I have also experienced people trying to help me over the years in ways that were about trying to change who I am and how I function. That doesn’t anger or bother me but I have learned that I have to point out that what I do and how I do it, just because it is different, doesn’t mean I’m doing something wrong. I’m sure there are easier ways or more organized ways to do many things but they aren’t things that fit the way my mind works – they just don’t jive with how I think and what will work for me.

I’m sure the same could happen in reverse. If i were to try to help out a friend of mine, offering advice let’s say, about something that they do and how they approach it or do it, and gave my NT friend aspie methods of doing things how could I reasonably expect that they would change the way that they think and experience the world to fit my Asperger ways? That would prove frustrating for both me and my friend.

Help and support aren’t the same thing. Support is often met with less stress and anxiety than efforts to help. If you are a neuro-typical and you are thinking about helping the person with AS in your life ask yourself, what your goals are. What are you trying to accomplish and why? Is it for the aspie or more for you? Are you invested, perhaps without realizing it, in having the person with AS in your life be more like a neuro-typical?

This is an example of an unrealistic expectation that will leave you frustrated in trying help and that will leave the person with AS feeling intruded upon and/or stressed out by your efforts to help. Often when you want to help you want to see change from someone else rather than changing the way you approach a person or situation.

Sometimes the best “help” is accepting the person with Asperger’s in your life for who he or she is. NT’s will benefit from education themselves about Asperger’s Syndrome generally. They will also benefit from going one step further in asking the person with AS in their life about him or her specifically because each person with Asperger’s is an individual. We aren’t all the same. We don’t all have every trait or listed manifestation of what Asperger’s is stereotypically described to be and mean.

Differences that aren’t accepted will continue to fuel exhaustion and exasperation. Those feelings are generated in those trying to “help” who are really seeking to change someone into thinking, being, doing, acting like they do – in other words – trying to get someone with Asperger’s to act as if or find a way to be neuro-typical. It just doesn’t work.

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This Aspie Isn’t Quite Getting Online Social Networking

A.J. Mahari — Mon, 30 Nov 2009 01:38:46 +0000

As a woman diagnosed with Asperger’s Syndrome in adulthood, perhaps I am still finding my way in some respects. I don’t know. However, this aspie is not quite getting social networking. I wonder, is it just me? I’d love to hear from other aspies about what they get or don’t get about social networking and social networking sites. What do you like about social networking and what don’t you like and why? Could it be that the word social, even from behind a computer screen, still packs a punch that leads to similar confusion online as it can so easily, socially, in “real life”? There’s something about being in my own world behind my computer screen that leaves me not so enthused about too much interaction what seems often intrusive interaction. Interaction whose purpose is at times not very clear.

The explosion of social networking sites like Facebook and others – and I’m not talking about dating-type sites – that’s a whole other thing – has brought with it the idea that the internet experience should be interactive. I wonder why. I truly do. I have been told by NT friends and others on the internet as well what is so wonderful about all of this interaction online. I don’t think I get it. I mean I blog, okay, but I have never been one to blog to get comments or to blog and wait for comments. Not that comments aren’t welcome, they are. It’s just that for me blogging is about saying what I have to say – period. It’s about sharing what I have to share. It isn’t that interactive for me. Ironically most of my blogs are not crammed with comments. I don’t know why.

Social networking sites and even twitter – in terms of personal tweets – leaves me scratching my head. I have thoughts about it, I observe it, but I really must be missing something. I got on Facebook the other day for the first time in months. I noticed in the feed that many of my “Facebook Friends” like apps for sure. They are starting zoos and doing something or other in some place called “Yoville” or something like that. Honestly, when I see these messages I’m like, okay, whatever that’s about. I mean I understand what apps are but the devotion of the masses – nope – that I don’t get? Anyone else? I wonder if my not getting it is just an Asperger thing or if it has more to do with the fact that perhaps many others, even NT’s don’t get it?

What do I mean by not “getting it”? I mean that I don’t see the reason or purpose to be ‘apping’ as a means of what appears to me on my screen to indicate some combination between some kind of “gaming” and perhaps something that is socially pleasing? I don’t know. Do you?

I understand that to some degree social networking for business or web endeavours has merit. I must admit, even that I do very little of. Am I really missing something? Beyond even that however, I the more I get messages from people, from networking sites and apps and stuff everywhere I turn on my computer online, the more I absolutely don’t get it. So, what am I missing exactly? Is this app-networking like a real-life social situation wherein people join in some activity for the heck of it because it’s what everyone is doing? Because it’s the “in thing” – the thing to do?

Okay, I’ll stop guessing. I wonder how many others with Asperger’s Syndrome find themselves puzzled by all this social network app and seemingly endless communication? Is it a world onto itself? This aspie is resisting it becoming a part of my world as hard as I can. I really am. Intellectually I get it but socially or inter-personally, I have to admit I do not get the value or the reason or the purpose.

I long for the good ole online days where I could just write on my sites or blog or what have you and receive email. That was simple. It’s purpose rarely complicated.

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Does The Social Isolation of Asperger’s Ever Push You to Despair?

AJ Mahari — Fri, 08 May 2009 20:49:15 +0000

Adults with Asperger’s Syndrome often struggle with a profound social isolation. Some feel it more than others. For some it is managed but for others it leads to despair and for still others it could factor into feeling like one wants to commit suicide.

If you have Asperger’s, have you ever felt this way? I heard recently from someone with Asperger’s Syndrome who wants to remain anonymous but who asked me to post something they shared with me on this blog.

The person who sent me this email is a 44 year old woman who says she just is at a point of such emotional pain – an emotional pain she described to me as seeming not only endless in terms of her social isolation but an emotional pain that she realized recently she has always felt and struggled with.

This 44 year old woman asked that I just call her E. E and I had a long conversation about the reality and nature of social isolation in Asperger’s Syndrome. I know myself, it’s an isolation that isn’t always felt as isolation as such but it can bring about many different feelings. I think that for many with Asperger’s Syndrome issues within the social realm of life cause varying degrees of emotional pain and bouts of despair and/or loneliness that need to be coped with. They can often come and go. More and more in my life they seem to come rather than go though.

E writes:

“I am not a person who thought that I would ever want to take my own life yet I find myself feeling this way a lot lately. I don’t think I want to take my life. I know that sometimes there is just such a deep pain that I have absolutely no idea what to do with that it pushes me into feeling total despair.

I watch people socialize, as if it was a sport or something – a sport I can’t play, don’t get, and that makes no sense to me. A sport that I sure don’t have the rules to or for. Whatever it is that people are sharing seems important to them. I don’t get it. I really just don’t get it. It is foreign to me. But then I look at my own life and I don’t have any friends. I don’t have any family. I am not connected to anyone, place, or even thing. Sometimes that matters and sometimes it doesn’t. It’s hard to articulate.

All I really know about these feelings of despair is that they come out of feeling like I don’t belong anywhere. I don’t feel like anyone cares about me. I don’t know anyone. And to be honest, at least a lot of the time, I don’t know that I really care about others – not the way it seems you are actually supposed to, if that makes any sense?

I’m writing to you A.J. in the hopes that you can talk to me because you have Asperger’s Syndrome and because you are a life coach. I don’t know who else to even try to explain this to. I don’t want to put my feelings on to you but I figure you must at least understand what I am talking about at some level.

Do others with Asperger’s Syndrome, if they are really honest with themselves, ever also struggle with this painful place that can rise up out of nowhere and leave you feeling that you just don’t belong anywhere? Do others feel as invisible, weird, and unimportant as I do? Even sometimes? Are there others out there like me who have no friends and no family and just feel like society sees them as worthless as a result?

I really feel like I want to just quit on life. I have no plan or anything right now but when I get to this place where I hurt so bad, I cry, the tears juts pour down my face. And I know that there isn’t anyone to help me with this. I know that this cannot be changed. I have Asperger’s and what that mainly means, among other things, is that I am lost socially. I stick out somehow. I have been bullied all my life. I am a freak. People see that I am different. I don’t even understand how they figure that out when they don’t even know me. I feel socially helpless and so clueless – just totally lost and that means painful despair for me”

If you have Asperger’s Syndrome and you are reading this and relate, I’d sure welcome your comments so that E can get some feedback other than the feedback I gave to her. I wonder if we don’t all know this place of despair when it comes to the reality of that intersection between Asperger’s and social struggles to varying degrees?

I hope that some readers will share their feelings and/or experience about social struggles and/or being bullied or teased and having Asperger’s and if that leads to feeling so frustrated it ends up going all the way to feelings of despair and/or hopelessness.

I have known 3 people with Asperger’s Syndrome who did take their own lives. Do we talk enough about Asperger’s Syndrome and suicide?

I must say that I strongly identified with most of the despair that they felt, at one point or other in my life. I myself sometimes do feel a significant amount of pain at the difference that I know I own when it comes to social “stuff” because I have Asperger’s. Not that that means the same thing every day or in every single social situation.

I also wonder if there aren’t aspects of socialization, whether understood, cared about, desired, or wanted at all, that still somehow end up effecting us in ways that leaves us feeling less than in the face of what is often a glaring difference. I must admit that there are times when I realize later how unaware of my own glaring difference I can be. And when the awareness arises later I can’t deny that it can be extremely painful. There is something very cyclical about this that continues to unfold in my own social experience, at times, that I may somewhat intellectually understand or have some insight about but that still, in the actual unfolding moments of, I remain mind-blind to.

Does the social isolation of Asperger’s ever push you to despair? If so, what do you do when you reach that place? What do you feel?

If you don’t want to share a comment here on the blog, but would like to discuss this, please feel free to email me at aspergeradults@yahoo.ca

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Asperger’s Syndrome – Living in Another World

AJ Mahari — Sun, 03 May 2009 14:45:54 +0000

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Real Freedom in Asperger’s Born Out of Living Outside the NT Box

AJ Mahari — Fri, 13 Feb 2009 08:54:49 +0000

Adults with Asperger’s Sydrome (AS) really know what it is to live life and to exist, be and differently function outside of the Neuro-Typcial (NT) box which is all-too-often held up as the measure by which we all must be held to standard. It is the measure used to determine value and worth, success and failure. It is the box that traps the NT and those with AS live much richer lives and should not be tarnished with this brush of judgment.

Monism, which is the doctrine that mind and matter are formed from, or reducible to, the same ultimate substance or principle of being, can be assimilated into an understanding of what it is like to be an adult with Asperger’s Syndrome (AS). It speaks to the reality that life is not some “other defined box” into which we must all fit. We, as beings, within this human realm with all of its incumbent nature cannot and should not be reduced to a single principle or way of being.

Human nature to varying degrees conditions human knowledge. Knowledge is inherently derived from what we are taught and what we experience. It can also be postulated that knowledge is also derived from our intuition, our spiritual essence. How we learn, how we process, how we experience concepts, precepts, and datum drive the ways in which we come to a working and ongoing understanding of ourselves and the world around us.

Ashok Tiwari – in “Real Freedom, A Philosophical View”, on his website asserts that, “Monism does not see, behind man’s actions, the purposes of a supreme directorate, foreign to him and determining him according to its will, but rather sees that men, in so far as they realize their intuitive ideas, pursue only their own human ends. Moreover, each individual pursues his own particular ends. For the world of ideas comes to expression, not in a community of men, but only in human individuals. What appears as the common goal of a whole group of people is only the result of the separate acts of will of its individual members…”

So, what I am driving at here is simply this: People with Asperger’s Syndrome (AS) live outside the box of the “whole group”, or society in general. This is seen, viewed, and defined by most as being “less than” and/or dysfunctional. When, in truth, what this really means is that those with AS are living lives that are of a different nature than those who are neuro-typical (NT). What the majority, in this case, NT’s, have in common, is all-too-often (if not always) seen and defined as “normal” leaving anyone, anything, or any difference in values, morals, goals, life choices, paths in life and so forth being categorized as unsuccessful or not valuable in accordance with a monistic view that rejects the metaphysical philosophy of freedom.

Freedom like a stone, in the eyes of some perhaps, but freedom nonetheless.

We are only as free, in this world, as our thoughts and understanding will allow us to be. Those of us with Asperger’s are in some ways freer than the average NT who ascribes wholly to the datum which espouses the kind of like-mindedness required to chase the 9-5 definition of both functionality and success.

To live outside of this cherished box is seen as the equivalent of being a failure. To society, it is defined as failing to do what an adult is supposed to do. It is viewed as a disability. I have struggled with this freedom-robbing reality all of my life. I am just now coming to a place of burgeoning freedom, understanding, and personal acceptance. I am coming to truly accept what it means to have Asperger’s Syndrome, the good, the bad, and the ugly. I am now a strong believer in the inherent difference between how I process information, view the world, function, contribute to the world around me, play my part, accomplish, and so forth, as an individual. No doubt that the Asperger way is much more unique (often seen as “weird”) but it is nonetheless totally a worthy and valuable way of being firstly, being in the world secondly, of processing information thirdly, and fourthly of relating.

If some of us didn’t live outside of the box, whatever you define that box to be, how would the rest of you come to know that box so well? I don’t judge those who live in the box so why judge me for not living there?

It is the inability that I have to be a part of the masses in many ways that actually is valuable and makes me tick so to speak. The reality of the metaphysical masses assumes that reality is a unified whole and that all existing things can be ascribed to or described by a single concept or system. A single way of doing things. A single way of being in the world – being social – being driven by a set of common values, morals, and a code of conduct.

Those of us with Asperger’s Syndrome, to varying degrees, live outside of this single way conceiving, thinking, understanding, acquiring knowledge, functioning or being. This reality does not make us any less. In fact, many would argue it makes us a whole lot more. It makes us more individual. We walk to the beat of our own drummers. Not all that is eccentric is negative. Not all that is not part of the main is negative.

Those of us with AS have a different nature. We have to be true to our natures just as NT’s have to be true to their natures. To all adults, like me, with Asperger’s I say, be sure to celebrate your differences and not get caught up in the “I’m supposed to be like everyone else” kind of thinking. There truly is not, despite the rhetoric spouted from so many areas of life, any everyone else, at all.

Gregory B. Yates, in his writing, “A Topological Theory of Autism,” says “Autism emerges as a major feature of brain evolution: It is generally not a disease. Autism has been with humans as long as humans have been and has marked human history.”

Yates makes it clear that the central defining feature of autism is social disconnectedness. Yates points out that, “The name “autism” derives from the Greek word “auto” for self, and proclaims the apparent mental involution or self-absorption of autistic people.”

As one who has to a certain degree experienced (and I continue to experience) what Yates describes as an “apparent mental involution” along with a dose of “self-absorption” I do not agree that how these are from the inside out are the same as how they are defined from those on the outside, looking in and trying to understand.

There is an awesome gift in the form of AS mental involution. I experience that gift in many different ways not the least of which is the way that I crave and process information.

I would also assert that not all that is involuted is negative either. Just as all that is exuded is not all positive or negative.

Just as the words of Ashok Tiwari, in “Real Freedom, A Philosophical View, “…men, in so far as they realize their intuitive ideas, pursue only their own human ends. Moreover, each individual pursues his own particular ends. For the world of ideas comes to expression, not in a community of men, but only in human individuals…” point out self-absorption is not reserved only for those who are autistic of have Asperger’s but is to some degree a part of the human condition.

What then, I ask, is the difference between the pursuits of those with Asperger’s, such as myself, for example, and the pursuits of others? Though some want to make these worlds or realities so different I postulate that there is more similarity than difference.

Being in one’s own world, to whatever degree one is socially disconnected, or different, can be one of the most single freeing experiences that a human being can hope to atta
in. Not all that glitters is gold. Just as not all that appears to be negative or is judged as negative or a lack is in fact the negative lack of anything.

Conversely, what I know about Asperger’s Syndrome from the inside out is that the reverse is actually true more often than not. What professionals and others deem to be such lack of functioning (which is really more to speak to a lack of “fitting in”) is for me the antithesis, of free-thinking, freedom of self-expression, a very strong ability not only to process information but to assimilate it and take things further than most give effort to thinking about in a 9-5 box.

Living outside the box has its inherent burdens but the benefits, in my experience, far outweigh them.

As an adult with Asperger’s Syndrome the freedom that exists outside the box is profound and cherished. As I keep pushing the limits of my box-free existence I continue to find more and more to celebrate and less and less to feel inadequate about.

Feelings of inadequacy often arise out of taking on the imposed “should-be’s” of others. They can also exist and be painful if one continues to believe that having Asperger’s and what that means in terms of being different makes one “less than”. Feeling “less than” is often a response to the negative experiences that accumulate when difference is not met with acceptance or understanding.

This process of self-acceptance is very much about not buying into the “party line”. Know that what appears to be the “common goal of the whole group” or a norm of our collective culture is really underneath it all a reflection of a mass mentality that seeks to undo the inherent essence of spiritual being — and our freedom to be as individual and different as we want to be or need to be in what it means to just be who one is.

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Do Aspies Really Feel Love For Others?

AJ Mahari — Sat, 07 Feb 2009 14:36:25 +0000

Neuro-Typicals (NTs) often wonder if those with Asperger’s Syndrome really feel love for others. As someone with Asperger’s Syndrome (AS), in my own experience, I think that what is more at issues isn’t so much what someone with AS feels or doesn’t feel but can they communicate what they feel or do not feel in a way that NTs can understand.

Recola, who has an aspie boyfriend and posted in the discussion area of Aspergeradults.ca Forum describing some difficulty encountered with her aspie boyfriend. She described his not being there for her in times of needing emotional support and understanding when she needs space due to her own stresses and/or his not fully understanding her need for space when she feels this way.

She asked this question: “Do Aspies really feel love for others or do they just stay with people who give them a comfort level?” and described that her aspie boyfriend seems to take leave of the relationship when she is depressed and that things seem to switch from him professing his love for her to him saying to her that “You need a helpful loving person, someone who can get you through those tough times that you have. I don’t have the energy for that”.

The first thing I want to make really clear in response to this is that each and every person with Asperger’s Syndrome (AS) has their own individual responses to life, to the stress of relating. Each individual person with Asperger’s has varying degrees of understanding of “other”. Whether or not Recola’s boyfriend can actually understand what her stresses or feelings of depression are like and what she needs and why or not is not clear. He may well not be able to empathize. Some people with AS lack empathy. Some have empathy and can’t express it. Some both have empathy and express it in their own ways.

It is important to remain cognizant of the fact that each and every situation for those who are involved in relationships with those with AS is somewhat individually different. There is no blanket statement to be made that every aspie will do this or that or not be able to do this or that relationally.

Asperger’s Syndrome is indeed a complication to many aspects of relating generally and specifically in interpersonal relationships for most. I believe that those of us with AS can learn to compensate for
that which we don’t understand very well. We can learn how to meet our partner’s needs, or at the very least how not to stress them more when they are facing emotional turmoil or other life challenges.

To the question posed, “Do Aspies really feel love for others or do they just stay with people who give them a comfort level?” forgive me for sounding like a broken record when I say that it is such an individual thing. There is no lumping us all together generally or when It comes to the ability (or perhaps lack thereof) to relate to a significant other. What it sounds like the aspie described by this poster to the discussion area of this topic is struggling with is lack of emotional reciprocity. This may well be because he, like many with AS, has mind blindness, which is described through the “Theory of Mind”

Theory of mind, or mind blindness is an impairment that those with AS must learn to compensate for to one degree or another in order to maintain heathy and functional relationships with those who are Neuro-typical (NT).

Those with AS may lack the ability to be able to consider, understand, and cope with other people’s thoughts and feelings. There may be times when an aspie may have a degree of understanding but not have found a way to communicate that understanding in a way that an NT would readily comprehend.

This reality can lead to difficulties in the areas of trying to comprehend the intentions, motivations, and subsequent actions and feelings of others.

If you are in a relationship with someone with Asperger’s you must remember that NT’s and those with AS do not share similiar ways of processing information and/or communicating. So to highten the chances of successful communication each must be willing to be patient in hearing the other.

People with AS may also lack understanding of their own emotions and/or the emotions of others. This often manifests as a lack of empathy.

At times any lack of understanding of emotions, one’s own or those of others, can be the result of the time it takes aspies to process information. Sometimes, just allowing the person with AS a little more time will help him or her to identify what they feel or to understand more about what an NT feels.

There are compensatory strategies that can build strength and more understanding to decrease the impact and potential negative effects this impairment. This has been my experience. However, that said, not all aspie’s will be able to make these efforts or even desire to consider making these efforts to learn to bridge the emotional and social gaps between themselves and those who are NT.

To answer the question then, I believe that aspies really do love others in their own way. What that way ends up being, looks like or consists of varies. As an aspie who has stretched and grown in compensatory ways in this area myself I know that in my own case I am not seeking to be in a relationship in the search for some comfort level. Comfort is often elusive and over-shadowed by the anxiety that presents when I am relating to my partner. So to the degree that any aspie seeks to be in relationship to another (and especially an other who is NT) I believe that in most cases this would be from a place of love – love as the aspie understands it which may be quite different and much more limited than an NT understanding and experience of love.

When Recola’s aspie boyfriend says he doesn’t have the energy to cope with her emotional state or needs this may be the product to some degree of mind blindness. It may also have a lot to do with the stress that dealing with emotions causes many with AS.

The bottom line here for Recola, or anyone who is NT in a relationship with someone with AS is that you have to decide what you need. You have to clearly ask yourself what you can and cannot live with.

I would encourage each individual NT in relationship to a person with AS to also consider just where on the spectrum their desired significant other is. I say this because I know from my own experience as a high functioning aspie that I can be taught how to respond to what my partner needs. I continue to educate myself and to challenge myself to learn and grow and adapt the best I can. My partner continues to learn how to best cope with the areas that present difficulties for her and then we both work at communicating and understanding each other.

I do not believe that aspies just stay with people who give them a comfort level because the exposure anxiety and general stress involved in relating are often formidable and for most I believe would be (as in my case) motivated by very real feelings of love. The territory that those with AS have to navigate to express love and to cope with relating is very different from the terrain traveled by those who are NT.

These relationships, between those with AS and NT’s require continued effort on both people’s part to address the challenges that will present themselves and it is crucial to understand that all that a couple seeks to mirror to and for each other within a relationship will be two very distinct reflected images presented in very differing styles of relating, communicating, and emotional expression.

It is therefore very important that assumptions aren’t made “facts”. Each person, and perhaps even more so the NT in the relationship need to clarify and re-clarify things in order to accurately understand the feelings and intentions of his or her partner.

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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What is the Impact of Jenny McCarthy’s Autism Cure Claims To Those Adults With Asperger’s Syndrome?

AJ Mahari — Sat, 07 Feb 2009 14:21:10 +0000

What is the impact of Jenny McCarthy’s experience with her son Evan wherein, according to McCarthy, her son is cured? Is he cured? Do people with autism or Asperger’s want to be cured? Is it something that needs fixing?

Jenny McCarthy, a self-professed advocate for her son Evan, who was diagnosed with Autism, and for other children who have been or will be diagnosed with autism, has written a memoir about her experience “Louder Than Words: A Mother’s Journey In Healing Autism“

The main thrust of McCarthy’s memoir, aside from telling the story of a very dedicated mother who has fought hard for her autistic son, centers around what McCarthy terms Evan’s “recovery”.

McCarthy, appearing on The View, Live with Regis and Kelly, Oprah, and Larry King to name the shows I saw her on, in each interview first spoke of Evan as recovered from autism. She would then, later in each interview, sort of back track from the word “recovery” and point out that while Evan does now attend a regular school and interacts much better and so forth, he does still have challenges.

What is the impact, generally, of this on those with Asperger’s Syndrome?

This might be a very difficult thing to assess. However, the specific autistic challenges that McCarthy’s memoir deals directly with the journey that the intervention strategies, treatments, and interventions, of more “classically autistic children” require. While not agreed upon by all professionals totally, there are doctors who support McCarthy’s strategies and results. Though the doctor who was on with her on Larry King was careful to say that results of these treatments vary widely in autistic children and the reasons for that aren’t fully understood. It is agreed, however, that the earlier these alternative treatments are attempted the greater the likelihood of favourable results.

It seems to me that to some significant extent a lot of what is being fought for by McCarthy and others for their autistic children are things that most children with Asperger’s Syndrome don’t ever lose (totally). Things like some eye contact, speech, the ability, (on a wide spectrum that varies in degrees) to be able to relate and be interactive. The question that begs asking here is do those with Asperger’s even require the same intervention? Will they benefit from the same things that McCarthy’s son did?

What is the impact, specifically, of this on those who are adults with Asperger’s?

I know for myself, speaking as an adult with Asperger’s who didn’t find out until I was 40 years old, it personally causes me a little bit of grief. Grief that I didn’t find out I had AS when I was a child. Grief that as a female much of what I was caused difficulty by was even more invisible than it is for most young aspie boys.

Grief that causes me to wonder, briefly, how would my life have been different – or if in fact it would have been different – if in fact it would have been different – if I had a mother who went to bat for me (which I did not have at all) like McCarthy has for her son. Grief just thinking about the what-ifs which is not a place I recommend any adult with AS stay in long. But it is only human to go there at times.

Self-reflection on these feelings and this grief, I think is necessary at times, for greater self-understanding, and in the end, a greater self-acceptance too.

How it impacts me, as someone on the specturm, who has Asperger’s is that I wonder about the quest to normalize autistic children. It’s a catch-22 of sorts. It hits at the question, are we all supposed to be the same? How does this desire and/or quest to make every child “normal” effect the way that we value or fail to value inherent differences? Does it send a message that what is perceived and defined by
many as a disability is a less than way of being. This is an attitude that leads to discrimination and marginalization of inherent worth.

McCarthy’s memoir, “Louder than Words” does tell a compelling story. It does offer hope for a growing number of parents and their autistic children. The statistics now say that 1 in 150 children will be diagnosed with Autism. Those numbers keep rising. Autism, in all its forms, is an epidemic, in North America for sure, and perhaps also in other countries.

As an adult with Aspeger’s Syndrome, however, it feels like a catch-22 of sorts to me – this entire issue of getting the most autism out of a child type of thing. For me being on the autistic spectrum continues very much to be an on-going paradox.

It has its amazing aspects and it has its challenging, frustrating, and still at times, painful and/or emotionally difficult aspects for sure. The question that comes up for me is would I really want to be changed now if that was possible or ever to be possible? I think, in spite of everything, my answer is – no. I have come to value my differences. I have come to find ability from the depths of what are challenges and inherent differences between myself and those who are neuro-typical (NT). In other words I am finally finding peace with being who I am. I am who I am in all that means. Asperger’s is not the some total of who I am but it is an important part of who I am.

I know that the important distinction (perhaps among many others) between Asperger’s and more profound manifestations of autism – or classic autism – has a lot to do with the differences that those of us with Asperger’s have in terms of being verbal, being able to communicate and not being “classically trapped” in a separate totally internal and separate world. However, I will make the point that there are times in my life, even now, when while I might know differently intellectually, there are times when being an aspie, primarily in the social arena, leaves me feeling like I know a little bit about what it might like to be that more classically autistic child. Socialization, is still, at times, and in many ways, for me, not at all like I’ve heard it described by NT’s and it can still cause frustration, pain, and lostness. But, as this is my own personal journey through this life, I take it that there is great purpose, even in that.

I do at the same time very much recognize the battle and the validity and important of this battle for these more “classically autistic children” however. Many of them are reported to seem rather normal until a certain age (or set of circumstances – some believe after vaccinations for example) when suddenly they withdraw inward and they stop communicating, stop making eye contact and more and more are lost inside of themselves in more profound forms of “classic autism”. To be saved from being trapped within I think is huge and important. To be helped to be able to communicate and to interact – to whatever degree – can make a life with autism much more liveable, especially for those around that child who love and want and need to interact with them.

The interesting thing in all of this too, in my opinion, is that much of what McCarthy talks about has having helped her son Evan, the wheat and gluten free diet, and addressing the yeast in his system, for example, along with the other methods used to “rehabilitate” him, referred to still as alternative treatments, do not work the same for all children with autism. Even all the children who are now able to take advantage of what McCarthy did for her son, the results vary widely. I wonder what information, if any, this fact, may well yield that may shed more light on the issue of whether or not what McCarthy’s son and others like him have actually experienced. Is it recovery? Does it have to do with the degree to which they were autistic? Can this be measured? It seems in many ways, for me, to raise more questions than this held out “cure” actually provides.

And another question that crosses my mind is of course related to causation. Can autism really be cured without knowing what causes it? What leaves one child classically or more profoundly autistic and the next with Asperger’s Syndrome, for example? Is it a case of different causes?

Is Jenny McCarthy and her son Evan’s journey revolutionary? Is it more typical than is known? Will it become more typical? Is it too cost prohibitive for way too many families?

And of course, I have to add here again, that there needs to be services and supports put in place for adults no matter where they fall on the autistic spectrum. Not every parent as McCarthy’s fortitude, reserve, or even financial choices. Not all autistic children treated like Evan will have the same outcome. Therefore, it is not just adults with AS that need services and supports because today’s aspie kids and autistic kids will be tomorrow’s invisible adults on the autistic spectrum for whom service is only a wished-for thing and certainly is not, in reality, tangible in any meaningful way.

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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