Asperger’s Syndrome in Women – Different not less

Art by Igor Mudrov

Art by Igor Mudrov

I have noticed that whenever women with Asperger’s Syndrome try to speak up and share the fact that they often experience greater levels of discrimination,

medically, in terms of receiving an accurate diagnosis at an early age and socially, in terms of having their diagnosis recognized and understood by others,

they are also often accused of suggesting that men with Asperger’s Syndrome must therefore, somehow,  have an easier life.

This is simply not the case and it irks me so that women with AS,

who seek simply to share their truths,

are so consistently having the validity of the expression of their own personal experiences

twisted and therefore,

disregarded in such a way.

Women with Asperger’s Syndrome  – Different not Less.

 

As I see it – Society treats males with Aspergers Syndrome differently to females with Aspergers Syndrome

Art work by Elena Vizeskya

Art work by Elena Vizeskya

I know there are many male Aspies who feel that there are no differences between their experiences of Asperger’s Syndrome and women’s experiences of Asperger’s Syndrome.

On one level I understand this realm of thought because essentially, if you’re only talking about the way in which we experience being socially overwhelmed, yet at the same time feel socially isolated, or being constantly misunderstood, or socially awkward and confused, then, yes these feelings/experiences are the same.

However, where they differ, is the way in which these experiences are being both understood and accommodated for by others and the consequences of that.

In simple terms, women can never truly know what it feel like to experience all of the social expectations that being a male of the species involves just as males can never truly know what it feels like to experience all of the social expectations that being a female involves.

In most areas of life this male/female binary differentiation is understood, accepted and endlessly theorized over as to how it came about.

Yet somehow, when it comes to the experience of living a life with Asperger’s Syndrome within a society in which it is already well recognised that this gender division impacts on such things as financial outcomes, employment opportunities, and still in many areas of the world, civil rights, let alone personal subjective experiences, some still seem to insist that women with Asperger’s Syndrome must experience their Asperger’s Syndrome in the same ways that males do.

From my experience this is simply not true.

My brother, for example, has always been excused from attending family occasions, a friend’s party or any form of public gathering, without a word of criticism.

More often than not, other family members can be heard willingly offering up excuses for him. ‘Oh you know Al, that’s just the way he is. He’s never liked being around crowds (including being in a room with more than 4 family members at one time).

Yet, if I feel that I do not wish to or am unable to attend a family occasion, a friend’s party or any other form of public gathering to which I’ve been invited, I am bombarded by words of criticism.

‘Oh, she’s snubbing us’. ‘How rude of her not to bother to attend.’ ‘I suppose she thinks she’s too good to bother with us,’ or the good old ‘She’s always so disorganized’.

In this instance, both my brother and I may have the same reasons for not wanting to attend whatever it is we’ve been invited too, i.e., there will be too many people, too much noise or we’re feeling too personally overwhelmed to deal with a group of people we don’t know, or we’re afraid of being socially awkward – again, of we’re simply already worn out from having had to deal with other social occasions.

Yet despite the fact that we may choose not to attend these social gatherings for the same reasons, the judgements and criticisms of others towards us as individuals can be and are very different.

My brother doesn’t have to put up with being treated as if he has done something terribly wrong or highly offensive by others if h chooses not participate because of his Asperger’s.

Whereas I, on the other hand, due to my Asperger’s, am continuously being placed in a position in which my integrity as person and my loyalties as both a family member and a friend are constantly being questioned.

I believe that the only explanation for the disparity between the ways in which it’s seen as acceptable for my brother to avoid social gatherings, whilst I experience being berated for the same behavioral need to avoid social gatherings, is gender.

He’s a guy, therefore its okay for him to not always want to be social.

I am a gal, I’m supposed to live for social occasions, to enjoy them, to want nothing more than to celebrate a reason to get all glammed up and engage in chit-chat.

Wrong.

I don’t enjoy social occasions, I don’t want to have to get glammed up just to stand around and have to try too hard to make small talk with people I may or may not know.

I am as socially awkward as my brother,( who incidentally is also never expected to get whatever the male version of ‘glammed up’ is), yet these facts are constantly being ignored and I think they’re being ignored simply because I’m a woman with Asperger’s Syndrome and apparently women with AS are supposed to be able to cope.

We’re supposed to be able to successfully mimic the social niceties of others so well that we can “pass ourselves off as being normal”.

And more than that, we’re also supposed to want to “pass as normal”.

It’s what we live for.

It’s what we take pride in.

Apparently there is no greater compliment for a woman with Asperger’s Syndrome than – “oh, I never would have thought there was anything ‘wrong/different’ about you. You don’t look/act like some with Asperger’s Syndrome.”

Wrong.

When it comes to Asperger’s Syndrome and gender, let me tell you that I hold as little interest in having to play the social game of ‘passing as normal’, as my brother has.

The key difference between us on this score is that only one of us is being accepted for the social differences/difficulties that our Asperger’s causes us, and it’s not me.

If you feel that you can offer up an explanation for this binary phenomenon between acceptance of the AS experience in a male, yet not in a female in the same family, other than gender of course, then I’d love to hear it.

Asperger Syndrome and the need for Social Justice – Could Autism be benefiting our society?

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A feature of Asperger’s syndrome that can be advantageous to society is a concern with social justice and discrimination against minority groups.

This can sometimes be strikingly developed in Asperger’s cases, often because of their characteristic impatience with conventional hypocrisy and publicly accepted double standards (not to mention the fact that they sometimes feel the victims of discrimination themselves).

Modern societies have canonized such concerns in law and public attitudes, and a number of famous campaigners for equal rights and social justice have been posthumously proposed as Asperger’s cases.

Autistics tend to be loners, who are poor at participating in group activities of the kind that exploit social justice and anti-discrimination sentiment for self-serving political and social advantage.

Modern authorities on autism have described autistics as “truth-tellers” and, thanks to their bottom-up, devil-in-the-detail style of cognition, are often the first to see that the emperor has no clothes or that the great idol has feet of clay.

Furthermore, they are also likely to be the ones to blurt out the truth, and draw attention to the inconvenient fact, irrespective of what others may think.

I do believe that autistic antagonism to lies and deception of all kinds is not only the most redeeming feature of the so-called disorder, but one which autism shares increasingly with modern societies—and very much to their benefit.” Original Article by Christopher Badcock http://www.psychologytoday.com/blog/the-imprinted-brain/201006/the-big-plus-the-outsider-society-truth-challenges-lies

I have often wondered whether or not the world would be a much better, fairer place, if it were being run by people who felt a burning need for social justice… aka…Aspies.

The above abstract is from a much larger article by Christopher Badcock which makes some strikingly good points regarding the ways in which the strengths of those with Asperger’s could be put to good use within our societies.

So what do you think?

Have your say on whether or not you think the world be a better, fairer place if it were being run by Aspies in the comment section below.

Asperger Syndrome – Grappling and Grasping

Artwork by Linzi Lynn

Something I’ve often noticed about the way Asperger’s Syndrome impacts on my life is the disparity that it creates between my inability to speak or talk smoothly and freely to people in real life, compared with my ability to express myself clearly in writing.

Believe it or not I regularly forget the words I want to use when I’m talking to people face to face.

They simply seem to just escape me.

Like birds that have flown their coop and no amount of trying can retrieve them.

In moments like these I find myself gasping for breath and completely lost, as my inner panic at not being able to find the right words, envelopes me.

More often than not I end up stuttering or just stopping, awkwardly, half way through a sentence.

Trapped in a suspended silence, gazing solemnly at the floor, while my mind continues grasping for that which can no longer be found.

I’m sure at such times I must come across as being an absolutely dim-witted ‘weirdo’.

I guess this is also the reason why most people are surprised to discover that I have two degree’s.

I bet they wonder exactly which cereal box I found my degree’s in.

It’s also why my family insist that I “could be doing so much more with my life….if only I wanted to”.

Hmmm…. Yes…. Right…. Because of course I want to be completely tongue-tied and empty-headed whenever I’m speaking to another person.

I can never seem to make my family understand that I don’t want my words to escape me when I need them most.

Or that the loss of verbal ability I experience when trying to talk to someone, isn’t ‘just a matter of choice’ or ‘obstinacy’.

It’s a genuinely, real, experience.

Yet give me a keyboard and I’m perfectly fine.

I can write for hours and when I do, words just seem to flow out of me.

There’s no grasping or grappling furiously for a language that is no longer there.

There’s no effort, no strain, no awkward silences.

There is only the freedom of expression.

The freedom of being me.

Does anyone else experience this level of disparity between the things you can do in one medium, yet not in another?

People with Autism want real friends too.

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This is true however; friendships can turn out to be incredibly one-sided and eternally complex for girls with Asperger’s Syndrome.

Often girls with Asperger’s Syndrome feel as if they have to hide who they really are in order to fit in and be accepted by their peers.

As a consequence of this, they often find themselves enduring conversations and situations that they really, don’t want to be in.

This is how my daughter describes the sense of complexity that friendships create for her.

“I like being with my friends ….

Sometimes….

But sometimes being with my friends just means that….

I have to do my hair,

And put on clothes that aren’t all that comfortable….

Just to listen to them talk about boring things…..

Or do things that I don’t really want to do…..

In places I don’t want to be….

Just to fit in….

Sometimes…..

I’d really like it if my friends could just come to my house,

Where I can wear my comfy clothes,

And do the things with me,

That I want to do,

I wish they’d just simply try,

Letting me be who I am,

How I am…..

Without judging me for being different……

So yeah, sometimes….

I like being with my friends…..

But I guess sometimes….

I just get so tired of always having to try,

Not being me,

Just to fit in.

I wish that they could see how boring fitting in,

Is to me.

Someday ….

I hope I have friends that want to fit in with me,

Instead of it always being the other way round.

That’d be really nice.”

 

 

Women with Asperger’s – Are We Victims of our own success?

Art by Jason Limon

Art by Jason Limon

How is it that we can be so gifted,

Yet  so challenged at the same time?

We see the details others don’t,

Yet can’t seem to find the right words

Or ever be sure of what to say,

Sometimes, because of this,

Life becomes nothing but a struggle.

Whether it’s a struggle to physically speak,

Or a struggle to interact,

It takes painstaking work for many of us,

To get even halfway close,

To appearing “normal.”

Sometimes when this struggle drains us,

Others judge us for being  weak.

They tell us to just “toughen up”,

“To get over it”,

And everything will be Okay.

It’s  as if the better we do,

The more people forget,

Or don’t register,

Our challenges.

How ironic it is,

That we should become the victims,

Of our own success.

WASP Women’s Asperger’s Syndrome Awareness Page – For those who understand

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For many women, the process of beginning to  suspect that their feelings, thoughts and ways of experiencing the world are somehow  different to that of  those  around them, can be a painful one.

Many women, especially those who discover later in life that they are on the Autism Spectrum, have often lived lives  filled with a quiet sense of desperation and confusion over their repeatedly unsuccessful attempts at living up to the ‘kind of life’ that societal expectations demand of them.

On the surface they may appear  to be shy, odd, home body types.

Or alternatively, come across as individuals who are rude, blunt, cold and determinedly goal oriented women.

When in reality they are often women who  have found that they do not easily make small talk with others  or possess a desire to gossip, read fashion magazines or obsess about their hair, make up, finger nails, shoes or any of the other supposedly ‘natural female interests’, that seem to come so easily to others.

As a result they may be women who have given up on pretending to be enamored by the social niceties of life, but, that does not mean that they themselves are not warm, caring, empathetic and highly intelligent women.

They are.

In many instances women on the Autism Spectrum are both highly creative and sensitive poets, writers and artists.

Yet because of their inability to ‘fit in’ socially,  they have also more often than not, endured years of being placed in the ‘too hard’ basket by health professionals, family and friends alike  simply because others have been unable to take their experiences seriously.

Many, especially those who are older, have experienced the utter lows of being misdiagnosed with damaging mental health conditions and have suffered the agony of being given up on as lost causes and  thrown on to the scrap heap of  humanity for doing what others perceive as ‘failing to willingly change their peculiar ways’.

Sadly, the practice of misdiagnosing young women and teenage girls on the Autism Spectrum with unnecessary and erroneous mental health conditions, is one that is still occurring today.

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As a consequence, many women who suspect that they may be on the high functioning end of the Autism Spectrum, the end formerly known as Asperger’s Syndrome, choose not to seek out a formal diagnosis.

Instead they seek to walk a path that allows them to discover their own degrees of awareness, understanding and self acceptance without feeling the need to have the inner truth of who they are and what they experience, validated by a diagnostic criteria that has already served so many women and young girls on the Autism Spectrum so incredibly poorly.

WASP Women’s Asperger’s Syndrome Awareness Page is a place for both those who are starting out on their journeys of self discovery and those who, after many years,  still find themselves walking along it.

It is a place where those of us who understand what it’s like to be at just about every point along the trail, can share, discuss, laugh and commiserate with each other over the many joys and misery’s that AS brings to our doors.

It is a place where no explanation is needed because we already understand.

You can find WASP Women’s Asperger’s Syndrome Awareness Page at http://www.facebook.com/waspwantsyou