Individuals with Asperger’s Syndrome are not Sociopaths. Sociopaths are Sociopaths.

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How many of us shudder each and every time there’s “breaking news” of some lone teenager somewhere, (almost always a male), reported to have gone on a shooting rampage, just knowing that sooner or later the initial shock of the rampage will turn to the tried, but oh so rarely true speculation, that the lone teenage gunman in question, has Asperger’s Syndrome?

I know that I sit and cringe, firstly for the harm inflicted, and secondly for the offensive accusations that cause the fear and mistrust of all individuals with Asperger’s which inevitably accompany each and every report of this kind.

And frankly, I’m baffled by the media’s constantly misaligned assertions as there seems to be  no genuine link between Asperger’s Syndrome, in either men or women, and a propensity towards violence.

There is however a genuine link to be made between those individuals who experience sociopathy and a propensity towards acts of violence.

Clinically, individuals who experience Asperger’s Syndrome are purported to share some of the same challenges as those who experience sociopathy, however, sharing the same challenge is in no way the equivalent of sharing the same underlying traits.

So what are the challenges that both individuals with Asperger’s and sociopaths are said to share?

Well, according to a jaw droppingly chilling autobiography titled “Confessions or a Sociopath” written by female author M.E. Thomas, who is herself a clinically diagnosed sociopath, they are, an inability to read people’s facial expressions and body language, difficulty with understanding social rules and most importantly an overwhelming lack of empathy for others.

Um…..well…. yes, to the first shared challenge, yes to the second shared challenge and an enormous NO to the last one.

I’ll admit that there were some parts of Thomas’s book that I could relate to, and dare I say it, even empathize with.

Take for instance the high levels of confusions she describes feeling as her early awareness that she felt as if she were running on an entirely different operating system to other children her own age blossomed , and how these self-identified differences within her were ignored by the adults around her, purely because she had been born female.

Such feelings and challenges are common to many adults with Asperger’s, particularly those diagnosed later in life, and especially women.

So too are Thomas’s descriptions of both being initially unaware of and confused by her inability to automatically read social cues, body language and the facial expressions of others.

Yet this is where any and all similarities end for me as Thomas then goes on to describe how her inability to feel any form of empathy towards the suffering of others empowered her life for the better and made her feel like a superhero.

Thomas openly states that she felt as if her differences, far from lowering her self-esteem, and making her feel vulnerable, actually served to build up her self-esteem to the point where, from a young age, she believed herself to be far superior to those around her.

She felt that she was mentally and physically stronger than other girls because she was not weakened by emotions.

She also states that, despite her claimed lack of ability to read other people’s expressions and body language, she nevertheless became extremely good at “reading people”.

So good in fact, that whilst still in primary school, she was able to pit girls against each other simply by befriending those she viewed as being overly emotional, hence overly trusting, and learning their secrets, only in order to tear them apart by sharing those secrets with others when it either most suited her for personal reasons or at times in which the unleashing of those secrets would cause the most possible harm.

She describes in great detail her relish, both as a child and an adult, in applying her skill set to the ruination of other people’s relationships, careers and basically their lives, for little more than amusement.

As far as I can tell from her descriptions,  for Thomas, unlike those of us with Asperger’s Syndrome, she either learned the social rules extremely quickly with little or no trial and error needed or, she never really genuinely lacked an understanding of those unspoken, but oh so ardently adhered to social rules that so often throw us off-balance.

It seems to me as if she must have understood the rules, how else would she have been able to use them well enough against those she chose too, even as far back as primary school if she didn’t at least have some idea what they where.

Hence, the rational conclusion is that she knew them but just didn’t care enough to obey any social or moral rules, that did not in some way amuse her or benefit her own ends.

For me, this raises the question of whether or not individuals with sociopathy are actually lying about being unaware of body language and social cues in order to down play or “mask” the true level of deceit behind their manipulation of others and in this way garner sympathy rather than condemnation for engaging in their chosen sport of destruction.

As many individuals with Asperger’s Syndrome can attest, we don’t “ignore” social rules simply because we figure we’ll get more out of life if we blunder around annoying, using or offending everyone else.

Far from it.

Our social blunders are never calculated manoeuvres designed to get us what we want as quickly as possible, because if that’s what they’re meant to achieve for us then clearly, we’re doing it all wrong as they often have the opposite effect of seeing us shut out of conversations, friendship groups and even family units.

No, individuals with Asperger’s do not play at being unaware of social rules simply to garner attention or bring about another person’s destruction.

We are not willingly choosing to “ignore” them in order to get what we want; we genuinely do not understand them.

Yet for a sociopath, or so it would seem, “ignoring” social rules in order to gain an often unfair advantage over another is both a willful choice and a tactic, while for individuals with Asperger’s, it is neither a choice nor a tactic, it is for want of a better word a form of “social blindness.”

Due to this “social blindness” there is often a very clear trajectory of vulnerability that flows through our lives as a result of our difficulties/ inability to accurately discern the actions and intentions of other people.

Time and time again we’ find ourselves falling victim to those who are good at lying and deceiving us with their false sincerity and intentions.

In other words, individuals with Asperger’s are more likely to be the victims of the vicious mind games that sociopath’s like Thomas describe playing rather than being the perpetrators of such games.

After having read all that Thomas has to say in her book about living the life of a sociopath, all be it a high functioning one, I hold no doubt what so ever that I am not one.

I do not fit into any of the clinical markers of sociopathy.

In fact, I’m not even close to it.

I do however fit within the majority of the clinical markers for Asperger’s Syndrome or high functioning Autism if you prefer and have been diagnosed accordingly.

As an individual with Asperger’s I can tell you that I love and care about people, shed tears of sorrow simply watching the nightly news, and do not try to deceive, mislead or harm anyone.

But that’s just me and I accept that everyone on the spectrum is different.

However, I do believe that after reading Thomas’s book there is an argument to be made that perhaps too many sociopaths are being misdiagnosed at an early age as having Asperger’s Syndrome based purely on the erroneous assumption that because individuals with Asperger’ share the challenge of being unable to read body language and social nuances correctly, and do not respond as expected in social situation, they therefore share the same inability to feel empathy in the same way that sociopath do.

Most professionals worth their title now agree that individuals with Asperger’s do not lack empathy, far from it, if anything they are entirely overwhelmed by it.

Yet despite this the myth remains within the public’s mind that every lone gunman must have Asperger’s and here’s why….

There’s been an indelible link carved into the minds of the public regarding any and all persons who are perceived as having a lack of empathy.

Basically as far as most people are concerned having a of lack of empathy, even if it’s only a perceived lack of empathy, thanks to sociopaths like Thomas, means that people will view you as the kind of individual who has the capacity to kill, harm or maim, any living thing, without remorse.

Hence individuals with Asperger’s, who are merely perceived as having a lack of empathy due to their lack of facial expression or lack of socially appropriate responses to highly emotionally charged situations, are viewed as being as dangerous as a real sociopath, a person who genuinely feels no empathy for others and because of this, is indeed prone to acts of violence regardless of whether they be cold and highly calculated or random opportunism.

Sociopaths like Thomas provide example after example of what a life truly devoid of all empathy looks like and it’s not pretty.

From childhood on-wards her life has been filled with manipulating people, lying to them, winning people’s trust purely for the purpose of betraying, wanting to physically kill people for the slightest of perceived infractions, mask wearing, deceit and corruption, and even the wanton killing of a small animal simply because it had the misfortune of falling into her pool on a day that was inconvenient for her.

Given these examples, it’s little wonder that people would rather not mix with Sociopaths, heck I wouldn’t either.

Which is exactly why I don’t  want either my son, my daughter, myself or anyone else to be even remotely thought of as being a potential sociopath simply because our differences for some prehistoric reason place us in line beside those for whom it’s a well proven fact that a lack of empathy is a marker of sociopathy.

The truth is that sociopaths do indeed lack empathy whereas individuals with Asperger’s are often merely perceived as not showing any outward signs of empathy, whilst feeling such emotions just as keenly as almost everybody else.

Perhaps there is also one last, but very salient reason as to why young sociopaths are predisposed to being diagnosed erroneously as having Asperger’s, and that is the rather inconvenient fact that, according to the strictures of the DSM-V Sociopathy, unless it is extreme, cannot be diagnosed in a child under the age of 16.

Herein lies the problem because according to Thomas, not only did her sociopathic tendencies first emerge during childhood, so too, did her blatant mastery of them to bully, cheat, lie, steal and manipulate those around her.

She even instigated and encouraged a group of girls to make a false sexual harassment claim against a male teacher for her own revenge against him for not receiving  an A in his class.

If you combine the existence of such sociopathic childhood behaviors with the inability of Psychologists to actually diagnose sociopathy in children, along with parents for whom it is much easier to be told that their child has high functioning Autism rather than that their child’s a sociopath, for whom there are no treatments, hence no pharmaceutical remedies, then you are in effect creating a breeding ground for misdiagnosis and confusion.

And people are genuinely confused by all of this and given the circumstances, who can blame them.

There needs to be a much clearer way to discuss and define the intrinsic differences between those who purportedly initially share similar social challenges, yet who have an entirely different etiology and outcome as a result of those challenges.

I’ll end this post with one of the questions that Thomas herself regularly challenges the readers of her book to ponder is over………

“Could you be a sociopath and not know it?”

Perhaps if you are an individual who has been diagnosed with Asperger’s but truly feel you have a complete inability to feel empathy, I challenge you to ask yourself the same question.

You may well wish to consider taking the Sociopath test instead of the Aspie Test.

If you do, be sure and let me know how you go as I’d love to know.

Girls with Autism / Asperger’s Syndrome and Pathological Demand Avoidance (PDA)

Art work by Aegis Mario S. Nevado
Art work by Aegis Mario S. Nevado

There’s wonderful documentary called “Girls with Autism” that’s just been released and in it, for perhaps the first time ever, the  girls themselves, their parents, carers and teachers, all speak openly about the realities of having Autism and the behavioral issues that some of them face within their everyday lives, including the very real and significant impacts that Pathological Demand Avoidance (PDA) has on them.

Pathological Demand Avoidance ( PDA) is real.

And how do I know that it’s real?

Because I live with the consequences of PDA every single day of my life due to my daughter’s experiences with it.

So I am thrilled to see this often debated aspect of Asperger’s Syndrome / Autism finally being so openly accepted and discussed within a format that has the potential to encompass a worldwide audience.

Firstly, let me make it clear that not everyone with Asperger’s Syndrome / Autism, will also experience Pathological Demand Avoidance.

I’m an adult with Asperger’s and I don’t experience it.

My daughter, on the other hand, who also has Asperger’s, does.

For many years I struggled to understand why my daughter’s behavior was so different from my own, when we both have Asperger’s Syndrome.

I mean, surely the fact that we shared a similar way of looking at and experiencing the world, should have meant that we’d be more likely, not less likely, to be able to understand each other.

And yet, it did not.

I simply could not figure out how I could be so peace-loving and routine based, while she could be so explosively unsettled from day-to-day.

To me, our differences did not seem to indicate a similarity of diagnosis.

If anything, they seemed to argue that one of us required a completely different diagnosis altogether.

So great were our differences, that I began to feel that we couldn’t possibly both have Asperger’s Syndrome.

Something was going on with my daughter that could not be explained by the outlining of our understandings of Asperger’s Syndrome alone.

I became so bothered by our differences that, back in 2012, I began writing a few articles which sought to explore and explain why I felt the differences between us were so significant and what such differences could potentially mean for many on the Autism Spectrum.

You can find those posts here https://seventhvoice.wordpress.com/2012/11/09/pathological-demand-avoidance-pda-and-autism/ and here https://seventhvoice.wordpress.com/2012/11/11/aspergers-syndrome-autism-and-pda-is-it-a-comfortable-fit/

Yet, when I first discovered PDA and began expressing my view that it might have been something that was affecting my daughter’s behavior, many adults on the spectrum became quite angry with me for doing so.

Many also suggested that PDA had always existed as a normal aspect of having Autism / Asperger’s and that I should leave it alone as all I was doing was simply adding another label to my daughter and in the process feeding the hungry bank accounts of psychologists.

Yet still I persisted and as I did so I began to understand that Pathological Demand Avoidance is both a very real and an extremely pervasive experience.

One that’s not only felt by those who are living with it first hand, but also felt by those who are trying to continuously deal with the fall out of it, second hand.

The level of additional understanding that PDA gave me, in terms of helping my daughter, was and still continues to be, utterly invaluable as it changed both of our lives for the better.

I went from constantly feeling lost and completely unable to understand my own daughter, (even though for all intents and purposes, given that we both have Asperger’s we should have been on the same page),  to feeling far more grounded, less to blame and completely able to figure out how to approach different aspects of her day-to-day life, without making her feel as if any requests I made of her were necessarily demands that she instinctively felt she had to avoid fulfilling at all costs.

Whilst some Autistic Adults still disagree and believe that PDA is a worthless label, I have found it to be quite literally,  a life saver.

To me it’s not just some sneaky little label that healthcare professionals have dreamed up in order to acquire more money, as some within the Autism community have argued, but rather a valid way of explaining why some individuals on the Autism Spectrum love and find comfort within a routine and why some either don’t or can’t find the same level of comfort in it.

Please, if you have the time, watch, “Girls With Autism” as it successfully debunks many of the myths surrounding Female Autism, PDA being just one of them.

 

 

Asperger’s Syndrome – Could the concept of Superpowers be causing more harm than good?

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There’s been a lot of talk about the increasingly popular idea that people with Asperger’s Syndrome possess some kind of superpower.

Indeed, many people seem to genuinely believe it.

Search any website on the topic and you’re sure to find groups of people who freely name their superpower and then describe in minute detail the extraordinary things that whatever their particular superpower of choice may be, enables them to do.

To me, such talk of there being any form of an Asperger type superpower is ultimately harmful as it reflects the misbegotten and much argued against concept that those with Asperger’s Syndrome view themselves as being, in many ways, superior to everyone who does not have Asperger’s.

It wasn’t all that long ago that we were fighting against the claim that all people with Asperger’s Syndrome were arrogant, detached, cold, sub-human, robot type intellectual beings, who were capable of memorizing complex physics equations , but who were also seen as being every bit as humorless , heartless and as incapable of feeling empathy as a toaster is.

Fortunately, we’ve come an awfully long way since those days.

As a society, we are now able to openly acknowledge that individuals with Asperger’s are extremely loyal and loving people who are just as capable of feeling empathy and sympathy as everyone else.

We also know that individuals with Asperger’s Syndrome give as much care and devotion to those whom they love as the rest of the population do.

We simply could not account for the fact that there are so many happily married and/or dedicated and loving parents with Asperger’s if the opposite were true.

Yet it seems that correcting the many myths and multiple misnomer’s that once served to create the image of individuals with Asperger’s as cold, heartless, intellectual machines, is simply not enough for some people.

Now, we are being encouraged, if not told, to believe that we must all tow the party line and admit to having some kind of hidden, yet terribly important, superpower.

A superpower that only those with Asperger’s Syndrome can have.

A superpower that serves , once again, to prevent us from being seen as existing within the realms of common humanity by re-framing us as having powers that go beyond the scope of an average human being.

Given that we’ve spent years fighting for the acknowledgement that we are human beings who just happen to be differently neurologically wired, as opposed to being weird, cold and sub-human beings with a superiority complex, I find it incredibly ironic that there is now a movement out there that is openly seeking to regenerate the whole ‘superiority’ angle by declaring that we have superpowers.

Apart from the fact that such claims are all pretty much bunkum, to what end does it serve to seek to over emphasize a whole range of weird and wonderful , mystical, new age types of manifestations or hidden talents within individuals with Asperger’s ?

Okay it may be good for an individual’s level of self-esteem to believe or feel as if their talents are valued, but as for the rest of the en mass movement toward claiming superpowers as an Asperger’s only thing….. Well I just don’t get it.

Yes we have empathy for others and in some cases we can be overwhelmed by the empathy we feel due to not being able to process it and understand it for what it is, as quickly as others do, but why on earth are some people striving so hard to rename this difficulty in storing empathy and in not being able to release it, as a superpower?

Why are some people now saying that someone who is good at storing information, regardless of whether or not they actually want to store that information, now has an information storing superpower?

Or that someone who has a photographic memory now has a photographic memory superpower.

Should someone who can play a piece of music after only hearing it once now be said to have a music playing superpower?

Should someone who can sing in a pitch perfect tone each and every time they sing, now be given the title of having a pitch perfect superpower?

Does someone who can draw a perfect skyline based solely on memory have the superpower of drawing, memory or both?

You’ll have to forgive me but not so long ago, we simply called these unique attributes skills or talents.

We certainly didn’t call them superpowers.

And we certainly didn’t ascribe to the belief that only those with Asperger’s Syndrome could do such things and thus hold such superpowers.

There are many people out there who are good at storing information that don’t have Asperger’s Syndrome. Take pub trivia nights for example or quiz shows like Sale of the Century or Who Wants to Be a Millionaire. You cannot seriously tell me that every single person who’s ever won big on any of those shows has Asperger’s.

(Here’s a hint, a contestant with Asperger’s would likely by so nervous or stuck in the midst of experiencing sensory overload due to the bright lights, movement of cameras and audience noises, that they’d have to be working extremely hard on just hearing and processing the questions, let alone getting out all of the answers required to win in that environment).

There are also numerous people who can play music by ear, draw pictures from memory and sing pitch perfectly every time, without ever first holding the prerequisite of having Asperger’s Syndrome in order to have their talents recognized without turning them into superpowers.

As far as I’m concerned, the minute we claim that the skills and talents that have always been apparent within a sub-set of the general population belong only to one particular sub-group, and we then name those skills and talents superpowers, we are falsely claiming a degree of superiority over every other group or individual, no matter how talented, that are not of our chosen ilk.

I believe that anytime a sub-set of the population declares itself to be the holder of superpowers; they are in a very real way, also declaring themselves to be superior to every other group and are therefore actively seeking to set themselves not just apart, but above, all other groupings within society.

I believe that in making the claim toward having superpowers and therefore superiority over the rest of society, some within the Asperger’s community are indeed trying to set themselves both apart and above society.

Which to me makes no sense at all, as up until now, the emphasis for many within the Autism Community has been on creating acceptance via the understanding that we are all, each and every single one of us, equal as human beings, no matter what our neurological status may be.

So please, think about what it is you are actually saying when you say that [insert type of skill here]  is my superpower because when you actually claim this as an individual with Asperger’s, you are effectively adding to the erroneous myth that each and every person with Asperger’s either is or considers themselves to be gifted and talented beyond all normal human measures.

After all, isn’t that exactly what a superpower?

So I ask you, is this really just a harmless way of making individuals with Asperger’s feel better about their unique traits, skills and talents, or is it something that could potentially cause more harm than good in terms of the concepts of equality and acceptance for all within our society?

We’re Women with Autism – Not Mystical Imps, Sprites or Fairies….. Get it right.

Artwork by Devushka
Artwork by Devushka
Sorry to disappoint all of those who wish to believe that Women with Autism are made out of some kind of unique fairy dust that endows all of us with “special talents” or “super powers”, because we are not magical beings.

We are Women Wired Differently…. not Women Wired Magically.

Please stop confusing our different skill sets, ie, our tendency to focus on the finer details of life that often make us more likely to pick up on the inconsistencies that are usually hidden within the bigger picture that people present to us, with being the equivalent of having a “super power”, “gift”, “unearned talent” or whatever else some would like to call it.

The truth is, that for us, our intense focus on fine details, whilst it may have started out as a fascination, has also become a survival mechanism.

Our intense focus is not magical. It’s practical. It’s what we do when we can’t “read” a person’s level of sincerity simply by looking into their eyes, listening for and recognizing the tonality in their voice or knowing automatically whether or not a smile is authentic at a glance.

Yes we may see the world in ways that others do not, but it’s still the same world and we’re still viewing it with eyes that are made up of all of the same biological matter as everyone else’s eyes are.

Yes at times it may seem as if we see more, but that’s not because we’re psychic beings floating about in fairy dust, it’s simply because we look harder and longer at the simplest of gestures, in order to decipher and makes sense of them for ourselves.

When we feel an emotion, we often feel it deeply but that’s not because we’re “super empaths” or somehow magically connected to the pain of another, it’s because we feel in fine detail too.

Yes we have a degree of empathy for others that may run deeper than most, but that’s not because we’re psychic, it’s because we’re focused.

Just as we focus visually and intellectually on the finer points that others may have missed, we can also focus our feelings on the finer points of emotions that others may have by passed.

We feel all of our emotions often simultaneously specifically because we live our lives without the benefit of having the filters that other people apply to their thoughts, their feelings, even their ways of seeing.

Which is why we can become so overwhelmed by our emotions that it makes it difficult for us to talk about or even explain them.

The depth of our feelings does not make us magical beings simply because we can feel that which we cannot explain.

It in no way means that we are magical beings. It simply means that we are unfiltered beings.

We’re not made up of different stuff or fairy dust at all. We just don’t have a way of filtering out the world around us the way that other people do.

I know that some would like to believe that this state of affairs somehow also makes us “purer beings”…. but does it?

Does it really?

And isn’t the idea of “purity” also linked to “innocence”, which is also linked to “children”…. as in the “innocence of a child”…….

Just think about it. We’re not magical, we’re not pure and we’re not children. We’re Women who take in and understand the world differently simply because we see it differently.

Do we really want the realities of our lives as Autistic Women being overlooked and marginalized simply because we’re being linked to the infantile ideals and imagery that being viewed as either ‘supernatural’ or ‘overtly innocent beings’, brings along with it?

 

Autism – Is it really our duty to educate you?

Artwork by San Base

Many within the Autism community seem to feel that we have a duty to help educate ‘professionals’ by exposing our own personal experiences of Autism to them with in Autism specific forums.

Personally I’m not at all sure that I agree with this premise, as it all too often holds the potential to place  those of us with Autism,  in the unenviable  positions of feeling over exposed.

Which for many, can also amount to making us feel vulnerable.

The belief that it’s up to any one particular minority group to educate the wider community in order to create the understanding that they have the right to be treated as equals, is an issue that many other minority groups have faced.

And just like those within the Autism Community, many other minority groups have also had to cut their teeth on the harsh reality that not everyone who’s interested in you, is genuinely trying to help or understand you.

For example, back in the late 70’s, early 80’s, a male a researcher who was interested in researching gay males, pretended to be a gay man himself in order to win their trust,  and acted as “lookout” for them in bathrooms and public venues, whilst at the same time recording details of their interactions with each other.

He  then began following them back to their cars, taking down their number plates and with the help of a friend in the DMV, used that additional information to track down their real names and addresses so that he could turn up at the homes of these men, some of whom were married, and proceeded to blackmail them in order to gain more personal information about their lives, habits and preferences, all in the name of  his “groundbreaking” new research.

Since then, it has been widely recognized by governing bodies, that lying, deceiving or in any way attempting to befriend or pretend to be a member of a minority group in order to attain personal information, is not just morally and ethically wrong but also potentially emotionally, psychologically and in some instances, even physically harmful.

Yet despite this, there are still members within the Autism Community who seek to enable and even justify the actions of professionals who routinely intrude upon the privacy of those within our community, by saying that ‘we as Autist’s need to teach professionals the truth about Autism’.

Yet I believe it is wrong for everyone within the Autism Community to constantly be made to feel as if it’s up to “us”  to teach those who are often in positions of power over us, the truth of Autism via the revelations, either intentional or otherwise, of our own personal experiences.

This belief presents many within the Autism Community with a false sense of security because it implies that all ‘professionals’ are trustworthy individuals who are  not only capable of viewing and understanding individuals with Autism as they wish to be viewed and understood, but are also willing to fly in the face of past theoretical frameworks, in order to genuinely present new research.

Yet, the truth is, those of us within the Autism Community, have no way of knowing for sure, whether or not said ‘professionals’ are intending to do either of these things.

Time and time again, it has been shown that those researching Autism often can and do, come up with new twists on the same old theories that many of us have found to be repugnant, simply in order to make a name for themselves.

Whenever such instances occur, we feel betrayed, lied too and let down.

And it is only after the fact that we realize all too late, that we’ve either misinterpreted their ‘professionals’ interest in us, or understand that they’ve misrepresented their intentions towards us in the first place.

Which ever way it goes, it’s always left to those of us who are not too afraid, or who have not been made to feel too vulnerable, to speak out.

Many of us lose friends along the way in doing so, as it can be difficult for others to understand exactly why and how another person may feel betrayed by participating openly within what they had assumed to be an Autism only group.

So insidious has the automatic acceptance of the “right” of ‘well meaning professionals’ to lurk within our groups for the purposes of ‘educating themselves’ become, that many no longer question it.

Yet I don’t believe that research ‘professionals’ have anymore  “rights” to interact with ASD specific groups than a gynecologist  would automatically retain the ‘right’ to interact within feminist groups, simply because they contain women who may discuss their private anatomy.

I think it’s time we took on board the lessons that have already been learned regarding the pitfalls of allowing professionals to engage with us so easily and without restrictions of any kind at all, on the internet.

I think it’s time we stopped thinking about Autism in terms of our perceived duty to try to educate our way into acceptance and equality and instead focused on protecting the “rights” of those within our community to feel safe, to remain free from harm and to not be taken advantage of by others when participating in online ASD groups.

We, as a community, need to keep in mind, that not everyone with Autism is either fully informed of the participation of ‘professionals’ within ASD groups, nor aware of the potential consequences of sharing highly personal information within such groups, should anyone within them hold any alterior motives for doing so.

Wouldn’t it be far easier for those who wish to engage with ‘professionals’ on the internet in order to ‘teach them the truth about Autism’,  to actually do so in groups that are openly and specifically  designed for that purpose?

Rather than allowing ‘professionals’ access to any and all ASD groups without question?

Wouldn’t it be easier, if we as a community, made a stand and decided that ASD specific groups should remain exactly that, ASD specific.

Just a thought.

 

Artwork by San Base

Asperger’s Syndrome’s missing trait

best-life-quote_325404-4 There are many websites, blogs and books that provide lists of traits that are purportedly said to be the common signs of Asperger’s Syndrome in Females.

However, each and every one of these lists has a tendency to focus exclusively on the outward signs of Asperger’s Syndrome in women.

Signs like:

‘difficulties with social interaction’,

‘dislike of small talk’,

‘poor co-ordination’,

‘fixation on special interests’,

‘preference for spending time alone’

I‘m sure by now we are all nauseatingly familiar with the above list of symptoms.

Perhaps we’ve even become so familiar with these lists that we’ve stopped looking for the traits that have been missed.

Well here’s a trait that continues to remain unlisted, although I cannot for the life of me understand why this should be so, as it is a trait that has been mentioned over and over again, by every woman with Asperger’s Syndrome that I’ve ever communicated with.

In fact, it may even be the one trait that is common to every woman with Asperger’s Syndrome.

And that trait is:

The early personal recognition, awareness or sensation that they feel, think and perceive the world differently to those around them.

                “I can’t remember a time when I didn’t feel different to everyone else”.

                “I’m pretty sure I was born different. No two ways about that.”

                “Different is something I’ve always been.”

                “I must have been the oddest child on earth. I know I certainly felt that way.”

“Evan as a kid, I felt, I don’t know, just different to my sisters and brothers.”

Given that this sense of personal awareness occurs long before the outward signs of Asperger’s Syndrome appear, it is perfectly logical to hypothesize that the early onset of this awareness may indeed be the exact reason why the outward signs of Asperger’s first appear to others.

“I didn’t like doing the same things that kids my age did, so I used to just go off and do my own thing.”

“I could never understand why other girls wanted to play with dolls. Dolls were boring to me.”

I believe that  this early personal sense of ‘not fitting in’ or of ‘not belonging’ within one’s own family, peer group or circle of friends, needs to be considered as one of the fundamental indicators of Asperger’s Syndrome or High Functioning Autism in females.

It therefore strikes me as extremely odd that researchers, psychologists and other related professionals’ continue to ignore the one experience that, so far, appears to be common to all AS Women, and instead focus on ideas such as ‘masking’.

Imagine how many girls could be helped if all it took to recognize their potential for being on the spectrum entailed the asking of just one simple question.

Do you ever feel different?

Does this post ring true to you?

Have you always felt different?

Asperger Syndrome in Females: An Underdiagnosed Population

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Asperger syndrome (AS) is an Autism Spectrum Disorder (ASD) characterized by significant impairments in social interaction, and rigid, stereotypical, or repetitive behaviours that exist alongside normal language and cognitive skills (Fitzgerald & Corvin, 2001). Researchers often use the terms Asperger syndrome and high-functioning autism interchangeably (Attwood, 2006), and so for the purposes of this paper, Asperger syndrome will encompass both diagnoses, and assume an IQ in the normal range, i.e., > 70. The ratio of males to females with AS is currently about 10:1, and on average, boys are referred ten times more often for diagnostic assessment (Wagner, 2006). Overall, the lack of knowledge about girls and women with AS is mirrored by a relatively small amount of empirical research dedicated to this population (Thompson, Caruso, & Ellerbeck, 2003). Much of the available literature includes clinical observations, case studies, and anecdotal evidence.

Some feel that the uneven gender ratio is a natural reflection of biological sex differences. Jones, Skinner, Friez, Schwartz, and Stevenson (2008) propose a sex-linked genetic cause, and argue that the single X chromosome in males is inherently vulnerable, creating a lower threshold of susceptibility to AS. Alternatively, Baron-Cohen and Wheelwright (2004) hypothesize that gender differences in brain specialization may explain the male-dominated ratio, and contend that while females are naturally better at empathizing, males tend to think in a systemizing way. They conceptualize Asperger syndrome as an extreme systemizing form of the normal male brain that may develop due to high levels of testosterone exposure in utero. The question arises, however, as to what extent sex differences are biological, or influenced by sociocultural factors.

In contrast to the researchers that find support for the current gender ratio, many believe it is inaccurate (e.g., Attwood, 2006; Rastam, 2008). Thompson et al. (2003) claim that a long-standing sex bias in AS research has resulted in diagnostic criteria too dependent on a male prototype, and point out that 80% of all ASD study samples have been male, on average. They suggest further that our present knowledge about ASD is actually knowledge about males with ASD. Nyden, Hjelmquist, and Gillberg (2000) highlight comparable issues in the diagnostic criteria for Attention Deficit Hyperactivity Disorder (ADHD), while Rastam (2008) parallels the development of criteria for clinical eating disorders, based largely on the signs and symptoms prevalent in females. Hully and Lamar (2006) suggest that overdependence on a male prototype means that traits in females must appear exaggerated for diagnosis. Ironically, researchers are finding it difficult to obtain samples on females that are large enough to allow for comparison by sex (Hartley & Sikora, 2009). This paper will explore how psychiatric disorders may mask AS in females, gender differences in phenotypic expression that can cause diagnostic confusion, and the attitudes and behaviour of others toward females with AS that can contribute to a missed diagnosis.

Several disorders have the potential to overshadow Asperger syndrome in females including depression, ADHD and Anorexia Nervosa (AN) (Hartley & Sikora, 2009; Rastam, 2008; Ryden & Bejolet, 2008). Researchers feel that the risk of misinterpreting signs and symptoms is strong, and could lead to misdiagnosis, or failure to recognize AS as the primary disorder (Cooper & Hanstock, 2009; Ryden & Bejolet, 2008). Hully and Lamar (2006) observed that as girls grow older, the presenting problem is less often associated with a developmental disorder, and stress that clinicians must take a detailed patient history to rule out AS in females. Accordingly, Ryden and Bejolet (2008) found that adult women with AS comprised a large portion of the psychiatric outpatients that they studied (39 females and 44 males), and speculate that many females do not receive an accurate diagnosis until they seek treatment for a comorbid disorder.

Although the gender ratio for childhood depression is 1:1 in the general population, by adolescence, females are three times more likely to receive a diagnosis of depression (Cooper & Hanstock, 2009). In fact, Ryden and Bejolet (2008) found a history of depression most often in patients that had not received a diagnosis of AS until adulthood. This could underscore a lack of awareness of how Asperger syndrome looks at different ages, and in females. Symptoms that often cause diagnostic confusion include a flat affect, minimal facial expressions, flat intonation in speech, irritability, and social isolation (Cooper & Hanstock, 2009). Hartley and Sikora (2009) found that girls with ASD, as young as 1.5 years of age, displayed an anxious or depressed affect more often, which lends support to this idea. In addition, Cooper and Hanstock (2009) discovered that Jane, initially referred for confirmation of a mood disorder, had a stable baseline mood over a long period. They concluded that failure to recognize significant social impairments, along with a flat affect and monotone voice, a number of school changes, and normal IQ and language skills, resulted in a misdiagnosis of depression.

Holtmann et al. (2007) found that females, across the entire sample that they studied, had significantly more attention difficulties than males, and similarly, Nyden et al. (2000) established that girls, aged 8 to 12 years, had greater impairment on the Freedom from Distractibility subscale than boys in the same age range. Greater attention difficulties in girls and women suggest that a misdiagnosis of ADHD may occur more often in this population. In accordance with this, Ryden and Bejolet (2008) assert that the lack of common sense and social disinhibition inherent in AS could be mistaken for impulsiveness, further increasing the likelihood of an incorrect ADHD diagnosis.

Ryden and Bejolet (2008) also discovered that adult female patients with Asperger syndrome scored higher on scales measuring borderline and passive aggressive traits, and mood instability, despite presenting with the same core AS features as males. Holtmann et al. (2007) uncovered a similar trend in their analysis of a matched subgroup of males and females.

Although core impairments were also equal in both genders, girls scored higher on scales measuring peer relationship impairments, social immaturity and dependency, as well as compulsive and bizarre behaviour, with older females scoring the highest. Similarly, Cooper and Hanstock (2009) found that Jane’s social impairments and deviance from her peers were more obvious as she grew older.

These findings suggest that if a clinician fails to notice a girl’s severe social difficulties in childhood, the result could be an incorrect diagnosis of BPD later on. Likewise, Ryden and Bejolet (2008) state that undetected AS might exist in a subgroup of older females diagnosed with BPD, which further emphasizes the importance of taking a detailed patient history when considering diagnosis. In addition, they stress that concepts of personality disorder and abnormal personality traits are difficult to separate in Asperger syndrome, and propose that a different model is needed to explain “odd personality” in this population.
Written by A. MacMillan

Yes – Asperger’s may present differently in women – but…

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I’m still not sure what to make of this notion (now being presented to us as an absolute fact), that women with Autism/Asperger’s Syndrome are being diagnosed less frequently, due to their apparently inherent ability to ‘mask’ their symptoms by ‘mimicking’ those around them.

There are just too many assumptions hidden within this concept that have not been deeply analyzed enough for my liking.

It almost seems like once again, we as women, are being told to turn a blind eye to any and all personal experiences that do not match up succinctly to the now, almost biblical accounts being written by psychologists, as to how women with Autism should present.

Accounts that not only seek to define our presentation, but come complete with a rationale as to why our supposedly ‘hard to spot’ tendencies have, for so long been so tricky, that it’s entirely understandable, and therefore forgivable, that we’ve been over-looked by the very profession that has at last finally deemed us worthy of recognition.

Call me a cynic, but I can’t help but feel that there’s something a little too psychologically tidy and self-serving lurking somewhere beneath the surface of all this.

Yes, Asperger’s may present differently in women, but just how differently and why those differences occur, are issues that I believe should still be up for debate.

As it stands at the moment, there are women in their 60’s who are now finally being diagnosed with Autism after living through decades of feeling disconnected and different, rejected and misunderstood by their families and enduring years of being misdiagnosed by professionals.

So how can it be that the same professionals, who have clearly recognized the level of difference, disconnect and/or difficulties with sociability that these women experienced, at least enough to have diagnosed them with depression, bipolar or personality disorders, now suddenly see fit to turn around and make the bold claim that Women with Autism ‘mask’ their symptoms?

If these women were ‘masking’ their difficulties/symptoms so well, then how come they were misdiagnosed with any psychological conditions at all?

The only evidence of ‘masking’ to found within these revelations, comes not from the women, but from the psychologists who were unable to accurately diagnose them due to their own erroneous belief, that women could not experience Autism.

Which of course is how psychologists, via their own actions in refusing to view such women’s behaviors as evidence of Autism, turned the notion that women do not experience Autism, into a very neat and tidy self-validating and self-sustaining psychological fact in the first place.

Only of course, it wasn’t a fact at all. It was nothing more than one profession dictating and reinforcing the terms and conditions under which it would see fit to operate.

By so doing they also set out the definitions and the frames of reference upon which the foundations our understandings of Autism were formed.

Which means that for decades, thanks to psychology, women with Autism were often left out in the cold, alone and confused, and more often than not, grossly misdiagnosed and subjected to harmful treatments.

It’s an incredibly sad but true piece of history and I can well understand why those within the world of psychology would like to pretend it hadn’t happen.

But ignorance, whilst it may be bliss for some, can prove to be incredibly dangerous for others.

I for one, have absolutely no desire to ever see this kind of history repeating itself again.

And yet..

Once again, our understanding of the way in which Autism presents in women is now being crafted in much the same manner.

Psychologists are telling us that women ‘mask’ their Autistic symptoms, hence the majority of the population will believe that this is true.

Yet history has already shown us that this notion of women ‘masking symptoms’ is not a particularly true one.

If, (as has been the experience of many older Autistic women), there has been a propensity within the psychology profession toward misinterpreting and therefore misdiagnosing Autistic women’s symptoms, then they should already have in their grasp, the many well documented cases of older Autistic women who’ve been misdiagnosed with other mental health conditions in an attempt to explain their ‘different’ behaviors.

This in itself, should be enough to indicate that the notion of women ‘masking’ their symptoms may not be entirely true.

After all, one cannot be misdiagnosed with a mental health condition if one is not showing any indications or awareness of having behaviors that would mark one out as being ‘different’ or in need of a diagnosis.

So are we to believe that these older women were just a rare bunch who were exquisitely bad at ‘masking’ their symptoms, because let’s face it, if they were actually trying to hide their differences and their difficulties, yet still ended up being diagnosed with a mental health condition, they must have been exceptionally bad at?

Or are we to listen to their eyewitness accounts and give ourselves permission to explore these hidden implications?

I for one, am in favor of taking the time to listen to the real life experiences of our older Autistic women, the ones who are only just now, after years of struggling to find answers, being acknowledged and diagnosed with Autism.

If we do, we may just find ourselves questioning the validity of the idea that women with Autism have a history of ‘masking’ their symptoms.

 

Autism – Gender still matters.

Photography by Noell S Oszvald
Photography by Noell S Oszvald

While claims such as:

‘Women with Autism are harder to diagnose than men’

or

‘Women with Autism ‘Mask’ their symptoms and men do not’,

continue to exist, and as long as one gender continues to be diagnosed less than the other,
then, Yes, as far as I’m concerned, when it comes to Autism, gender still matters.

A person with Autism’s gender is still, quite clearly, being applied first and foremost, as the optimal qualifier for either validating or denying not only their Autism….

But also the ways in which they are expected to experience, display and define their Autism.

To me, as a woman, the use of gender as a qualifier for the existence of Autism, has made all of the difference.

So you’ll have to excuse me if I choose not to allow the inevitable, accompanying, gender specific notions of how, as a woman, I’m expected to define and experience my Autism, to over ride my own lived truths.

I will not bend myself in two, simply just to fit into some new, neatly categorized, version of what I should now be.

I am now, as I have always been, simply me.

A person.

Not a category.

Women and Autism – How one woman’s letter to a psychologist finally helped her receive an ASD diagnosis after years of personal invalidation.

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This amazing letter was written by a woman who suspected that she may be on the Autism Spectrum, prior to meeting her psychologist for the first time. Here’s what she had to say.

“Dear Dr L—

I hope in this letter I can give you a more thorough explanation of how I feel, the way these feelings affect me and why I think a diagnosis and continued support would be beneficial to me.

I have an over-active mind and experience high anxiety.

I constantly see things at multiple levels, including thinking processes and analyse my existence, the meaning of life, the meaning of everything continually.

Nothing is taken for granted, simplified, or easy.

Everything is complex.

Being serious and matter-of-fact has caused me many problems and I have been told on numerous occasions that I come across as rude and/or abrupt.

Every year my work progress development report says that I would benefit from some kind of people management course, which to date has never happened.

Making friends or developing relationships has always been and still is very difficult for me.

As a child, I was convinced that I was away the day everyone decided who they would be friends with.

This has always been an area that has caused me confusion.

I still have a constant feeling that I am misplaced, isolated, overwhelmed, and have been plopped down in the wrong universe.

If I had friends, my tendency was to blindly follow wherever they went and to escape my own identity by taking on theirs.

I dressed like them, spoke like and adapted myself to his/her likes and dislikes.

I have had a couple of “friends” in my life for a very long time but I mostly talk to them online as I do not like leaving the comfort of my safe environment.

Even with people I know well I do not like being in their houses as my anxiety levels hit the roof.

I get agitated and uncomfortable not knowing what to say, what to do, if I’ve over stayed my welcome or would it be rude if I left now, have I stayed long enough.

This leads to seriously high stress levels, nasty thoughts in my head, sweating, increased heart rate and a sudden urgency to flee.

When I know I don’t have to be anywhere, talk to anyone, answer any calls, or leave the house, I can take a deep breath and relax.

Even something as simple as a self-imposed obligation, such as leaving the house to walk the dog can cause extreme anxiety.

It’s more than just going out into society; it’s all the steps that are involved in leaving–all the rules, routines, and norms.

Choices can be overwhelming: what to wear, to shower or not, what to eat, what time to be back, how to organize time, how to act outside the house….all these thoughts can pop up.

I struggle when I’m out with sounds, textures, smells and tastes, which in turn creates a sense of generalized anxiety and/or the sense that I am always unsafe or in pending danger, particularly in crowded public places.

There have been times in crowded places like shops where the confusion and anxiety has gotten so high that I have had to just say “I need to go” and have walked out and straight to the car to gather my thoughts and calm down.

Counting, categorizing, organizing, rearranging, numbers brings me some ease and has been with me ever since I can remember.

Over the years I have sought out answers as to why I seemed to see the world differently than others, only to be told I’m an attention seeker, paranoid, hypochondriac, or too focused on diagnoses and labels.

My personhood was challenged on the sole basis that I “knew” I was different but couldn’t prove it to the world.

My personhood was further oppressed as I attempted to be and act like someone I’m not.

I have children diagnosed with ASD and am concerned that I am not doing the best for them due to my own inhibitions.

Still I question my place in the world, even more so now that my son has a diagnosis of ASD and I see so many similarities between what he’s going through and my own personal experiences.

How can I help them to adapt and learn when I don’t know myself how to deal with the situations that are causing them the most problems?

I would really benefit from help in learning to deal with my issues.

Now that I understand the Autism Spectrum and am convinced I am well within the spectrum, the hope is that I will get support and advice can benefit me and allow me to help my children.

My hope is that through diagnosis and the support that should follow; I will be able to work on the areas that I lack the necessary skills for dealing with society, in.

If I can get help for myself it will put me in a better position to guide and help my children.

Apologies for the lengthy explanation, I hope I have given you the information you were seeking. If not please don’t hesitate to contact me.

Yours sincerely

Amanda”

 

Amanda is sharing this letter in the hope that it may help other woman avoid some of the pain and confusion she’s experienced in her own life. Thank you so much for your willingness to help others Amanda ❤