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?

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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?

 

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.