Australia Day – Invasion Day

“We lose nothing by tempering our own views in such a way as to be able to incorporate within Australia Day, both our gratitude for being able to live in such a beautiful land our acknowledgement that our fortune came at the loss of our Indigenous population.

Were we personally responsible for the past?

No, of course not.

But we are personally responsible for both the present and the future.”

Vulture Culture

I am truly grateful to live in this beautiful land.

At the same time, I am also honest enough to be able to acknowledge the history of dispossession that shadows our land and hence to seek to understand and honor the feelings of Australia’s traditional indigenous population regarding Australia Day.

In so doing, I offering up my humble apologies for the disrespectful way in which Australia was stolen from its traditional indigenous land owners all those years ago.

I believe that holding the capacity to acknowledge the wrongs of the past does not make anyone a “bad Aussie”.

If anything, I believe that holding the capacity to truly acknowledge our past, whilst also offering up a genuine willingness to pay respect to the true custodians of this land, would make us better Australians.

There is no shame in showing respect and understanding towards those for whom Australia Day is not…

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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?

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’s Syndrome – It’s not how you look, it’s what you see….

Artwork by Brandon Scott
Artwork by Brandon Scott

“You cannot determine a person’s intellectual capacity, personality, political view or personal interests,” based on their appearance alone.

Nor can you accurately “assess a person’s character by noting whether or not they are fit, fat, frail, thin, old, young, able-bodied, disabled, black, white, tattooed, male or female.” Quotes from T. Moss

It is entirely irrational to believe that one can judge the character of another person, based purely on their appearance.

We know this.

Yet there are still so many people out there who believe that they can judge the capacity of an individual with Asperger’s Syndrome / Autism, to feel love, joy, compassion and empathy, based on little more than an observation of our facial expressions or the focus of our eyes.

Please stop doing this.

We’ve already explained to you, that for us, making eye contact can be difficult and that often, our internal feelings do not match our external expressions.

So please stop judging us based solely on your interpretation of our appearances.

Or haven’t you heard?

‘Appearances can be deceiving.’

And we should know, because you’re the ones who taught us that.

When it comes to plastering on a  ‘fake smile’ and pretending that ‘there’s nothing wrong’,  you guys are the experts.

Not us.

Never-the-less, we’re not judging you.

Or calling you cold-hearted liars, simply because you can all smile, without even wanting too.

You see,  life has already taught us that sometimes in this world, it’s not how you look, but what you see, that makes all the difference.

So try seeing us differently.

Please.

Thank you.

 

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.

 

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?

 

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 ❤

 

The Gendering of Autism – How a few deliberately biased questions turned Autism into a men’s only club.

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Since the 1980s, the prevalence of those with Autism associated with science, computing and other hi-tech industries, has once again singled out Autism as being a primarily male condition.

Diagnosing famous scientists, engineers, and computer scientists with autism has become both a parlour game and a cottage industry—Albert Einstein, Paul Dirac, Bill Gates, and Isaac Newton are among the most commonly cited in this category.

Contemporary understandings of geek masculinity have become one of the more common, gendered screens through which autism is now understood.

According to the Extreme Male Brain (EMB) theory of autism, people with autism possess hyper-male brains, therefore the existence and/or severity of their Autism, can be graded based on a scale that views those who are less adept at systemizing tasks (mostly women) as non-autistic, and those with extremely high systemizing abilities (mainly men) as being people with Autism.

To achieve this male and female interests are categorized as either “systemizing” or its opposite, “empathizing,” and then placed along a scale that grades from female to male to the extreme male (or autistic).

In particular, the EMB theory takes the form of a “double hierarchy,” in which an established series (e.g., male-female) forms the basis for a second series (systemizing-empathizing).

In a 2009 study Baron-Cohen co-authored with Bonnie Auyeung, et al., the authors provide these points of evidence for their extreme male brain theory:

-“The typical male brain is heavier than the female brain and individuals with autism have heavier brains than typical males”.

-“The amygdala is also disproportionately large in boys compared to girls … and children with autism have enlarged amygdala”.

Not only does this evidentiary criteria over emphasize differences between those with autism and those without; but it also forces males and females further apart by exaggerating the differences between average women, average men, and autistic people.

Further to this Baron-Cohen claims men are more interested in systemizing tasks, such as engineering, computer programming, and mathematics, or hobbies based on mechanics, construction, and categorizing—metalworking, boat-building, crafting musical instruments, even bird-spotting.

Whereas women tend to enjoy “having supper with friends, advising them on relationship problems, or caring for people or pets, or working for volunteer phone-lines listening to depressed, hurt, needy, or even suicidal anonymous callers”.

Based on these insights, Baron-Cohen devised a series of three tests:

-The systemizing quotient (SQ),

-The empathizing quotient (EQ),

-The Autism quotient (AQ).

All of which reflect his predetermined, gendered notions of male and female-appropriate activities.

On the Systemizing Quotient Test, testers are asked to rank their answers on a Likert scale to such questions as -“If I were buying a car, I would want to obtain specific information about its engine capacity” and “If there was a problem with the electrical wiring in my home, I’d be able to fix it myself”.

Meanwhile, the Empathy Quotient test includes such prompts as “I try to keep up with the current trends and fashions” and “When I talk to people, I tend to talk about their experiences rather than my own”.

In these prompts it can be seen that stereotypically masculine activities are assumed to reflect systemizing, while stereotypically feminine activities are assumed to reflect empathizing.

Clearly, these questions can easily be seen to reflect socialization as well as biology.

Therefore changing even a small number of the questions to more gender-neutral issues could have easily reduced or removed the sex differences found within SQ scores.

In 2006, Sally Wheelwright, Baron-Cohen, and their collaborators published a revised version of the SQ, the SQ-R, which included a wider range of questions about systemizing.

The original SQ, the authors admitted, “Were drawn primarily from traditionally male domains.” For this reason, the SQ-R included “more items that might be relevant to females in the general population,” a feature that would allow the researchers to determine whether men would continue to score higher on the SQ “even with the inclusion of items selected from traditionally female domains” (Wheelwright et al).

Some of the new prompts included “When I have a lot of shopping to do, I like to plan which shops I am going to visit and in what order” and “My clothes are not carefully organised into different types in my wardrobe” (answering “no” on this prompt presumably indicates an SQ type of brain).

The SQ-R successfully shifted the results. In the original SQ, men had a higher mean score on 86 percent of the questions, while women had a higher mean on only 13.2 percent. In the revised version, men scored higher on 68 percent and women on 32 percent—a rather dramatic shift in the sex ratio.

The SQ-R itself demonstrates that these sex differences may largely be an artefact of the testing prompts and the specific mix of questions applied.

One might therefore, hypothesize that the SQ could be revised even further in ways that would more drastically equalize the scores.

This article consists of excerpts form an academic paper written by J. Jack and published in 2011.

 

“The Extreme Male Brain?” Questioning The Gendering of Autism.

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“In 2005, autism researcher Simon Baron-Cohen opened a New York Times article with the following statement: “By studying the differences between male and female brains, we can generate significant insights into the mystery of autism” (Baron-Cohen). What makes this statement possible, rhetorically, is a process of gendering that has made autism spectrum disorder (ASD) into “The Male Condition”—the title of Baron-Cohen’s piece.”

“Autism is an example of what Judy Segal calls a rhetorical disorder: in the absence of clear biological markers for autism, “discourse fills the space that certainty in medicine leaves unoccupied.”

“in 2010 the APA released working notes for the DSM-V, which offered new criteria for autism and placed Asperger’s syndrome (heretofore a separate disorder) within the umbrella category of ASD. Such a shift would be fundamentally rhetorical, in that it is enacted through language, persuading practitioners to categorize individuals in a new way.”

“Autism is shaped in part by “social meanings, symbols, and stigmas” attached to it. What makes this process unique, in the case of autism, is that these social meanings do not merely demarcate the “normal” (or neurotypical) from the “abnormal” (or neurodiverse); instead, they also differentiate between men and women, in such a manner that the “male condition” is pathologized alongside the autistic condition.

“ In the case of the EMB theory, this commonality stems from the fact that more boys than girls receive autism diagnoses, by a ratio of 4 to 1. These statistical facts, though, are extended to the disorder itself, where maleness is applied to the brains of individuals with autism. In the process, researchers espousing this theory construct a scale, drawing on the rhetorical figure of incrementum, or scale, which positions women, men, and people with autism along a continuum according to the degree to which they possess some quantified trait.”

“An incrementum is simply a scale, but one that can be used for rhetorical purposes. For instance, if we claim that men tend to be heavier than women, who tend to be heavier than children, we have constructed an incrementum, ordering those three groups according to weight. This claim might seem noncontroversial, but imagine constructing a scale in which we measure intelligence, instead, and order individuals according to sex. That type of scale can support a range of unsavory arguments for policies of all sorts, and would be fundamentally rhetorical both in its construction and its use.”

“Sex and gender offer readily available lenses for understanding autism because they are “present” and by referencing culturally specific notions of sex and gender, researchers make those elements hyper present, and, in the process, obscure others.”

“Late twentieth-century rhetorics of technology, gender, and the service economy make it possible to order individuals along new scales, including technological ability and emotional intelligence.”

“ These scales have shaped scientific understandings of autism in ways that direct the attention of researchers to some aspects and deflect attention away from other important issues, including alternative scientific theories, the interests of girls and women with autism, and the issues deemed most important by autistic people themselves.”

This article consists of excerpts from an academic paper written by J. Jack and published in 2011.