A Minority of One – Words from Magda Szubanski

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“The crucial difference between Lesbian, Gay, Transgender, Bi-Sexual, Intersex and Questioning people and other minorities is this:

In every other minority group the family shares the minority status.

In fact it is often something that unites them.

But gay people are a minority group within the family.

A minority of one.

It means, among many things, that gay children cannot draw on the collective family wisdom about how to deal with their minority status.

No one else in the family has experienced what the gay child is going through.

Worse still: all through our growing up, from the instant we realize we are gay, we live with the gnawing fear that our parents’ love could turn to hatred in an instant.

Intangible prejudice pervaded everything.

Lesbian characters in films or books were creepy, psychotic, jealous, scheming, neurotic, humorless, bitter, barren and died horribly.

In The Children’s Hour Shirley MacLaine hangs herself in shame; June Buckridge gets her ‘just deserts’ in The Killing of Sister George.

The dream of a long gay life filled with love was entirely absent from the culture we consumed.

And worst of all, many of us internalized the bullshit.

We took the loathing into ourselves.

Some of us, God help us, believed it to be true.

Like a greedy parasite this self-hatred attached itself to every other doubt and fear we had about ourselves, amplifying it, extending it, giving it power.

Until we were colonized by our own contempt for ourselves.

A lucky few escaped this scourge.

Some, for whatever reason, never succumbed: for them being gay was not an issue.

I wasn’t one of the lucky few”

Coming out.

It sounds like making your debut.

But for gay people there was no party, no celebration, no welcoming into the bosom of our family and our community.

We came out and waited for the brickbats.

We came out not knowing if, at the end of it, we would still have a family, a community.

Some people were convinced that it would kill their parents.

Some of my friends have been with their partners for twenty years and more, and their parents still don’t know they are lovers.

That constriction, that inability to be open with the people we love more than anything in the world, corrodes the soul.

My generation of gay people are sometimes like the walking wounded.

As teenagers, closeted and terrified, most of us never learned to weather the ups and downs of dating.

Mine was probably the last generation in Australia for whom the idea of widespread public support for homosexuals was unimaginable. It is not so long ago that gays were subjected to aversion therapy – which is to say electric shocks to the genitals.

This is to say: torture.

The best we could hope for was not getting beaten up, being grudgingly tolerated and allowed to form gay ghettos in neighborhoods where the rent was low and the crime rate high.

We were inured to the meagre array of career prospects.

Theatre, hairdressing and interior design for the guys.

Stage management, security companies and social work for the women.

Talents withered.

People led double lives and lived in terror of blackmailers.

The victimization was one thing.

The propaganda was almost worse.

We were blamed for the transience of our relationships, the illnesses we contracted, for pestilence, misfortune and bad weather.

And, perhaps most damaging of all, we were told that we were predatory.

That our sexual desires were not only unnatural but that we were child abusers.

Even before AIDS we were seen as a contagious illness.

In a supreme irony, proselytising Christian missionaries accused us of recruiting.”

The above words are quotes from Magda Szubanski  wonderful auto biography “Reckoning”.

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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.

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 – What will I gain from being diagnosed later in life? It won’t change anything for me, so why should I bother?”

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People often ask me: “What will I gain from being diagnosed later in life? It won’t change anything for me, so why should I bother?”

Well, my answer as to whether or not anyone should “bother” to get diagnosed is this.

Firstly, on a purely personal level, it depends entirely on what your personal circumstances are and what the biggest issues are that you’re facing at any given point in time.

If you’re a person who’s main problem is that you’re always feeling misunderstood or blamed by your family member for being the way that you are, then perhaps receiving a formal diagnosis may help your family members to comprehend and accept that some of the onus for understanding both who and how you are, falls upon them to make more of an effort to accept you as you are, rather than allowing them to continue to always view you as being the one who needs to change.

Secondly, if you find that you may be in need of some form of formal support or assistance, then receiving a diagnosis may help you to better be able to access whatever support systems are in place within your area.

A diagnosis should also, at the very least, help others around you to become aware that you are genuinely more in need of care, understanding and support than they had previously thought.

Thirdly, if you want to increase your own levels self-understanding and awareness or further seek to validate your own understandings of yourself as being both true and accurate, then receiving a diagnosis may also provide these assurances for you.

But, if you are a strong-willed person who is confident enough to be able to self-identify with having Asperger’s, without feeling any twinges of doubt about it what so ever, then you’ll most likely feel that either the seeking out, or the receiving a diagnosis, is not for you as it holds little potential to offer you any great benefits.

And that’s okay.

But for me, I have found that those who benefit the most from older women such as myself coming forward and being diagnosed, are the generations of girls who are yet to come and the generation of girls and women who are still today, young enough to incorporate this deeper understanding of themselves as females who are Autistic,  into their daily lives and move on.

At my age, receiving a formal diagnosis offers me purely the ability to understand myself better and enables me to finally ask for the things I’ve known for so long that I’ve needed all of my life, things such as solitude, peace and quiet, but have never been made to feel as if it were okay for me to ask for these things, because I am a woman and women are supposed to love company and to always want to be social creatures.

I had no way of explaining to anyone, let alone myself, why I’ve always felt that I needed so much time alone.

Yet for girls of my daughter’s age, receiving a diagnosis is offering them so much more.

It is offering them the opportunity of being able to grow up with the gift of truly knowing not only who they are, but also understanding how they are, and that they’re okay.

That it’s okay to be different.

And this to me, as both a woman and a mother, is the gift of understanding that I truly believe is worth fighting for.

I am so glad that there were women in the past who had the strength, courage and forethought, to lead the way forward and to lay the foundations that so many of us today are now standing on, by arguing, on our behalf’s, that High Functioning Female Autism is a very real phenomenon.
Believe me when I tell you that I am all too aware that if no woman had ever dared challenge the male based status quo of the understandings of Asperger’s Syndrome of the past, that neither my daughter nor I, would now be diagnosed.

So how exactly does receiving a diagnosis later in life help anyone and what does it solve anyway even if you do get one?

Well, for one thing, it is likely to allow many women to make sense of their pasts.

To knit all of the previously unresolved elements of their lives, their personalities, their characteristics and their traits, into some semblance of a perspective that will finally make sense to them.

So if that one singular perspective that makes sense of your life is the one thing that you’ve been missing, then getting a diagnosis, even at a much later stage in life, can still provide you with a huge feeling of relief.

In terms of gaining greater access to benefits and assistance, if you are already financially secure or successfully working, then no, receiving a diagnosis later in life, may not help you in any way in terms of on the job support training and alike.

But what it will do, is benefit your children, and your children’s children.

And if you’re not a mother yourself, then please understand that your actions and your choices, may end up benefiting your sister’s or your brother’s children.

The knowledge and validity that we as women gain from receiving a formal diagnosis, could well prevent future generations of girls from having to put up with the kinds of constant bullying that are caused by male bias ignorance.

This will enable them to grow up holding all of the answers to all of the questions that we once, as children held locked inside of our own heads, like fragile eggs, and were too afraid to ask why it was that we were so different from everybody else.

If being diagnosed later in life can help to take away from another child, that awful sense of confusion and self-loathing that comes from knowing that they don’t belong, without ever fully knowing or understanding why, then I’m all for it.

So whilst a formal diagnosis may not seem to be such an important deal individually, in the grand scheme of things, I can see how each and every woman and girl, diagnosed today, can help create a stronger, better defined and more brightly lit path, for our Autistic girls of the future to walk upon.

Unlike us, they won’t have to spend over half of their lifetimes stumbling around in the deep and uncertain dark, and that’s a good thing.

I’m not sure whether holding ideas like these makes me a dreamer, or simply yet another deluded fool.

Either way, the more women and girls who are diagnosed today, the harder it will be for the powers that be, to dismiss the needs of Autistic Women in the future.

I understand that this way of looking at things is not everybody’s cup of tea, but it certainly is mine. So comment and let me know whether or not you agree.

Autism Is Not Gender Specific – Our Society Is….

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The labeling of  Women who do not fit neatly within the confines of society, as being ‘nutty’, ‘weird’, ‘batty’, ‘anti-social’, ‘loners’, ‘reclusive introverts’ or ‘eccentric’, when they may indeed be experiencing undiagnosed Female Autism, creates the kind of life long harm that ensnares Undiagnosed Autistic Women forever, within the confines of an artificially imposed, yet personally experienced prison, of societies making.

It’s high time that  the name calling, isolation and double standards that lead to the abandonment and  misdiagnosis of Women with undiagnosed Autism stopped.

It should no longer be considered acceptable for our society to be encouraged to acknowledge only those presentations of  Autism that fit within the confines of Male Autism.

Autism is not a Male only condition.

Yet still today, if a male exhibits peculiar behaviors, or behaviors that are viewed as being out of the norm for males, they are automatically considered for an assessment of Autism. 

Their behaviors are both attributed too, and understood as being part and parcel of  the presentation of Male Autism, even before that assessment takes place.

As such, Autistic behaviors in males are considered excusable, simply because it’s perceived that they may be on the Autism spectrum.

Yet, when a Female exhibits similar sets of peculiar behaviors, or behaviors that are viewed as being out of the norm for females,  she’s considered by others to be ‘weird’,’ unruly’, ‘unfeminine’,”highly strung’,’ intentionally disruptive’, ‘rude’, ‘bossy’ or ‘deliberately seeking attention’.

The one thing  Women’s behaviors  never seem to be automatically considered for, is an Assessment for Autism.

As a result, most Females on the Spectrum (either diagnosed or undiagnosed)  are often punished socially, emotionally, economically and psychologically,  for behaviors that they themselves may have no idea are unwelcome or are breaching social expectations.

Many girls and women are not even aware that they are on the Autism Spectrum until much later in life.

Nor unfortunately, are the people who often surround them in their daily lives.

Even their families, friends and peers often fall into the trap of  re-attributing or reconstructing,  the traits of Autism in  Women, as personal behaviors that arise due to a perceived lack of self-discipline, ambition, sociability, maturity and in many cases, even sanity.

In short, when it comes to Women and Autism, it still seems that the overwhelming propensity amongst many in society is to perceive Female Autistic traits as evidence, not of Autism as they do in Males, but as evidence of some kind of personal female weakness, fault or issue.

This results in the re-labeling of Female Autistic behavior as being anything but…Autistic.

It seems that it is still far easier for those within our society to re-label Autistic Women with any number of demeaning personal faults, than it is to open their eyes to the possibility that the rates of Autism amongst Women, particularly older women, are much higher than anyone dared previously imagine.

Autism is not Gender Specific and therefore, nor should our understandings of it be.

Asperger’s Syndrome in Females – A biased perception.

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Tony Attwood (2006) observed that parents and teachers often send boys for evaluation at the point when their aggressive behaviour becomes a significant problem at home or school. The practice of making referrals based on acting out behaviour, means that overall, more boys will be evaluated, and the perception that aggressive behaviour is significant in AS may mean that parents and teachers overlook children who do not display disruptive behaviour (Attwood, 2006; Wagner, 2006). Girls, for example, may not have tantrums or meltdowns at school, but may instead, refuse to respond to requests or participate in activities (Wilkinson, 2008).

An often present feature in Asperger syndrome is an intense interest in one or more areas (Beteta, 2009), and long, encyclopaedic monologues, often on obscure subjects, are usually recognized as indicating a possible AS diagnosis in boys (Attwood, 2006). Findings suggest, though, that girls tend to have more age-appropriate interests, that generally reflect those of their peers, e.g., horses, or creative pursuits (Attwood, 2006; Beteta, 2009).

Attwood (2006) emphasizes, however, that the dominant role these interests play in the life of a girl with AS is qualitatively different from the role that the same interests play in the lives of her female peers. Attwood (2006) stresses further that a girl’s intense interests can extend well beyond an appropriate age,  and that this can help to determine abnormal intensity and focus.

Overall, these observations suggest that increased insight into how these interests function differently for girls with AS, may help to clarify diagnosis.

The use of social echolalia, i.e., mimicking others through imitation and modelling, exists almost exclusively in girls with Asperger syndrome  (Beteta, 2009; Wilkinson, 2008). In an effort to reduce their social and communication impairments, girls may copy the mannerisms, voice, persona, and behaviour of others, often quite successfully (Attwood, 2006).

However, Beteta (2009) points out that although girls may seem to benefit from the use of social echolalia, often they do not truly understand the contextual meanings of what they are mimicking.

Ryden and Bejolet (2008) found that adult females also seemed more successful at mimicking social behaviour than adult males, and for this reason, they rarely fit the original description of Asperger syndrome.

This suggests that the use of social echolalia may hinder the recognition and diagnosis of AS, and consequently, access to relevant support (Attwood, 2006), and that girls and women may experience increased stress in dealing with the consequences of mimicking behaviours that they may not quite understand.

Overall, a greater awareness of gender differences in phenotypic expression is vital so that girls will receive an accurate diagnosis, and access to services that could lessen the impact of AS, particularly beyond childhood.

Furthermore, as researchers discover the extent to which statistical gender differences translate into clinical significance, it is likely that support services will need modification to accommodate this new knowledge (Giarelli et al., 2010).

Differences in attitudes and behaviour towards females with Asperger Syndrome may also contribute to a delayed or missed diagnosis (Giarelli et al., 2010; Hartley & Sikora, 2009).

Attwood (2006) noticed that parents were more hesitant to seek a formal diagnosis if their daughters appeared to be functioning adequately, and that clinicians tended to hesitate in making a diagnosis unless the signs were quite conspicuous. This reinforces the observation made by Hully and Lamar (2006) that AS traits need to be exaggerated in females for a formal diagnosis.

In contrast to boys with AS, who are more often teased, ignored, or bullied by their male peers, girls more often experience support and even protection from some of their female peers, which could result in failure to recognize significant social impairments (Attwood, 2006). Beteta (2009) stresses that these friendships rely on the willingness of a girl’s peers, and accordingly, Rastam (2008) found that many girls with AS tended to have only one friendship that was usually tenuous in nature, and few peer relations overall.

In addition, the perception that many girls with Asperger syndrome seem to manage in social situations, can cause others to question the accuracy of diagnosis.

One result may be that when a girl exhibits behaviour common to AS, it is misunderstood as deliberate or wilful (Beteta, 2009), and she may not receive the necessary supports. Cooper and Hanstock (2009) found, for instance, that school staff continued to feel that Jane’s behaviour was “put on”, even after she received a diagnosis of Asperger syndrome.

Moreover, parents and teachers often connect social and functioning difficulties with intrinsic personality traits rather than to a developmental disorder like AS (Cooper & Hanstock, 2009). Specifically, they may misinterpret deficits in social skills, such as poor eye contact, as signs of shyness, embarrassment, or naivety (Wagner, 2006).

Girl’s social impairments, for example, are often misconstrued as stemming from their reserved natures, hence girls initially received an incorrect diagnosis of early onset anxiety disorder (Wilkinson, 2008).

In conclusion, there are a number of possible explanations for the 10:1 gender ratio in Asperger syndrome. Some think that the large number of diagnosed males accurately reflects natural sex differences in brain specialization, or points to sex-specific genetic susceptibility to AS (e.g., Baron-Cohen &Wheelwright, 2004; Jones et al., 2008).

Others believe that the current gender ratio misrepresents the incidence of AS in females (Thompson et al., 2003).

A biased perception of how AS presents may contribute to underdiagnosis (Attwood, 2006; Beteta, 2009), as many emphasize the overuse of a male prototype (e.g., Hully & Lamar, 2006; Thompson et al., 2003). Clinicians may attribute symptoms to psychiatric disorders more commonly seen in the general female population (Cooper & Hanstock, 2009; Rastam, 2008; Ryden & Bejolet, 2008), gender differences in phenotypic expression could mean that core impairments go unnoticed or are misinterpreted (Attwood, 2006; Beteta, 2009; Wilkinson, 2008), and the attitudes and behaviour of others towards females with AS may also contribute to underdiagnosis (Cooper & Hanstock, 2009; Wagner, 2006).

It is clear that one explanation for the uneven gender ratio is not sufficient on its own. The reasons are multifaceted and complex, and it is likely that other possibilities will emerge with additional research.

However, a greater understanding of gender differences in Asperger syndrome will likely play a large role in balancing the 10:1 ratio, as more females will receive an accurate diagnosis.

Written by A. MacMillan

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.

The problem with the Mask Analogy for Women with Autism

Digital art by Rik Oostenbroek

A mask is a false external covering.

It can be worn to conceal a person’s true identity for better or for worse.

The idea that Women with High Functioning Autism are not being adequately diagnosed, simply because they wear masks, also carries within it the ideation that all women with Autism intentionally try to conceal their true selves in order to ‘pass as normal’.

This in turn implies that all women with Autism willingly engage in the act of perpetrating some form of female deception which, in turn, somehow creates the inability of professionals to recognize them for who they are.

The idea that women are fiendish creatures, capable of deceiving men, is not a new one.

In fact, that particular idea is as old as humanity and has been used successfully over the course of history to deny women the same basic human rights and considerations as men.

Which is why I’m not convinced that the increasingly accepted notion that women with Autism are being misdiagnosed because they “mask” their symptoms, is an entirely valid or correct one.

So let’s look at this concept of ‘masking’ a little more closely.

Women with Autism will often express the feeling that they’ve ‘never fit in’ with those around them and that they’ve always, including childhood, felt somehow ‘different’ to others.

As far as I can see, such expressions are not consistent with the idea of ‘masking one’s true self’ from others.

If anything, most women diagnosed later in life often express a sense of both exasperation and sadness over the fact that no one close to them either noticed or addressed their difficulties as a child.

So what are we to make of these facts?

Are we to say that the inability of those around them to acknowledge their differences and their needs, as children (girls), somehow created in them a desire to ‘pretend’ or ‘mask’ who they were?

To me such rhetorical connections make no sense at all, as it would be more accurate to say that women with Autism experienced having their needs ignored as children, rather than saying that they ‘masked’ their needs under such circumstances.

Whilst, it may be fair to say that as we grow older we learn how to try to ‘fit in’ better, I don’t think it is equally fair to say that we learn how to ‘mask’ ourselves better.

We don’t ‘mask’ ourselves but we do try our best to ‘fit in’.

As far as I know, the desire to ‘fit in,’ to not stand out and therefore become the object of ridicule, is a trait that is common to all humanity and not just those of us who are female and have Autism.

And this is the problem with the mask analogy.

Everyone tries to ‘fit in’.

Not everyone, however, practices deceit in order to do so.

We women with Autism are a profoundly honest lot.

Our honesty, along with our lack of awareness of social cues, forms one of our key features.

We are so honest with other people that our honesty often see’s us labelled as ‘blunt’ or ‘rude’.

Given these facts, perhaps someone can tell me just how it is, that we ‘mask’ our true selves again?

Oh yes, that’s right, we ‘pretend’ to be ‘normal’.

Well obviously we’re not doing a very good job of it, are we, if we’re constantly being accused of being too ‘blunt’ or ‘rude’.

We also apparently make ‘easy targets’ of ourselves because in reality, we are more often than not, the people who are lied too and taken advantage of  by others.

Given all of this, one could ask; just whose perception of ‘normal’ are we applying here and whose definition of ‘pretending’ or ‘masking’ are we using?

A mask is usually used to denote a form of visual perception, a false front, a concealment.

So are we being accused of ‘masking’ our true selves simply because we look so normal?

If that’s the case, may I just point out one simple fact, of course we are going to look like human beings because we are human beings.

Women with Autism are not some kind of exotic sub-species, (demarcated by purple spots or pink hair), any more than men with Autism are.

We can’t change who we are and in all honesty, most of us don’t try to ‘mask’ who we are either.

What we do is try to ‘fit in’ so that we can avoid being ‘easy targets’ for disreputable people to hit.

And what makes us easy targets?

Our trust, our propensity for taking people at face value and our inability to discern when someone is deceiving or lying to us.

Clearly the only things we need to get better at ‘masking’  are our vulnerabilities. Oh but wait, isn’t that exactly the very thing we’re already meant to be so blindingly good at?

‘Masking’ our true selves so well that we confuse professionals?

Think about it.

Is the mask analogy, truly one that  fits, women with Autism?