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.

Chalk Word Lines of Separation by Judy Endow

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“Sneaky words, said with a smile,
While holding a piece of chalk,
To draw the dividing line,
Made by words,
Sounding alright on the surface,
But laden with,
Otherness.
Less Than
Different
Not US
And sometimes Not Quite Human

We are the people you call

  • Special
  • Low Functioning
  • High Functioning

You say we are in need of a

  • Peer Buddy
  • Peer Pal
  • Good Friend from Mrs. Jones Program

We are the

  • Inclusion Student
  • The community service hours other kids need

We sit

  • At the Peer Buddies lunch table
  • The Special Ed table in the Inclusion Room
  • On the Special Ed bench waiting for our short bus

During the school day you will find us in the

  • Inclusion Room (when it is our turn because they can only take one of us at a time)
  • Cognitively Delayed Room
  • Behavior Room
  • Emotionally Disturbed Room
  • EBD Room (Emotionally Behaviorally Disturbed)
  • Special Ed Room
  • Special Needs Room

We are so doggone “special” that after school we attend

  • Special Olympics
  • Special Arts
  • Special Night at the YMCA
  • Special Needs Social Group

Where every participant is just as special
And those who are not special are our helpers

 When we grow up we live in

  • Special Housing
  • Some of us in Section 8 rentals
  • Some in group homes
  • Some in county care facilities
  • Some of us are so special that there isn’t even a special enough place for us so we stay living with our parents.
  • Some of us are not quite special enough to get on a housing list and yet cannot maintain on our own so we stay living with our parents.

As adults too many of us spend our days

  • In Special Programs (if our county has them)
  • At ARC (if our town has an ARC)
  • At Sheltered Workshops (if one is available)
  • In Supported Employment (if we qualify)
  • Looking for a job (on the days we are able to)
  • On the couch in our parent’s home (because other options are not available)

Because we are so deficient
In ever so many ways
Whenever we do something ordinary
like zip up our jacket, ride a horse, or answer Jeopardy questions you describe us as

  • Awesome
  • An Inspiration

I don’t understand this. If my friends and I are such awesome inspirations to the rest of you

  • Why is it that we are in two distinct groups – US and THEM?
  • Why is it that your group always holds the chalk?
  • Why do you keep using your chalk to draw lines that divide us?
  • Why do you want me on the other side of your line – away from you?
  • And why do you think this is good?”

By Judy Endow

This is just an abstract from her amazing poem, “Chalk word lines of separation”, I encourage you to read it in its entirety on her blog site at http://www.judyendow.com/advocacy/chalk-word-lines-of-separation/

Men face charges over prolonged sexual assault of disabled man

justice

Two Tasmanian men, Adam Maxwell Cox, 34 and Mark Paul Phillips, 25, have been charged with committing several counts of aggravated sexual assault on an intellectually disabled man.

The sexual assaults were described by the Tasmanian Police as being “particularly serious and particularly nasty” assaults that took place over the course of several days.

With the first round of sexual assaults lasting for a period of eight hours.

The second over a period of 17 hours.

According to court documents, the nature of these aggravated attacks included, but were not limited to;

” sexually assaulting  him by penetrating his rectum with a broom handle and a glass beer bottle.”

“Assault by setting fire to the man’s body using flammable liquid and tying him to a punching bag.” 

“Assaulting the man by tying him to a pole for several hours and hitting him with a baseball bat, machete and fists”.

“Loading a double-barrel shotgun to his leg while he was tied to a pole.”

As a result of these attacks, the victim suffered severe internal injuries, particularly to his bowel, which required immediate surgery and will no doubt cause him significant ongoing health problems for the rest of his life.

Despite the heinous nature of the charges against them, both Cox and Phillips refused to enter a plea and were released on bail pending a future court date.

Given the vileness of the crimes that both Cox and Phillips have been charged with perpetrating against this trusting and vulnerable, disabled man, and the undeniable nature of his injuries, one has to wonder why it is, that although they were both charged with aggravated sexual assault, which to my mind should also include, “occasioning grievous bodily harm”, they were both released on bail and allowed to walk freely back into society.

Why are men like these, who have been charged by the police with committing such unforgivable and life altering acts, effectively being allowed to buy themselves a temporary reprieve from jail?

And why are we as a society constantly being expected to put up with the knowledge that the likes of such men are walking around our cities and towns, doing God knows what, to God knows who, just because the justice system needs time to set all of its wheels in motion?

Clearly whatever the bail limit was set at, it wasn’t high enough to prevent either of these perverts from being able to pay their way out of jail.

In instances such as these, one has to question why they were even given the option of bail in the first place.

Clearly the police found enough evidence to arrest and charge them with the crime, so why let them go?

On a more profoundly disturbing level, it also makes me wonder whether or not the fact that the victim was a disabled man and not (heaven forbid) a child or a woman, had anything to do with the rational for offering up bail as an option at all.

Were these maggots somehow viewed as being less of a threat to the community specifically because they had targeted a disabled man and not a woman or a child?

If that was the rational behind furnishing them with the option for bail, then it should be viewed as being an extremely flawed and precarious, one indeed.

For who among us in society could possibly be more vulnerable than the profoundly intellectually disabled?

Cases like this really make me question just how effective our so-called justice system can be seen to operate in either its role of metering out justice or protecting any of us from those who are known to cause harm.

Let alone protecting those who are already the most vulnerable within our society.

Quotes from  www.examiner.com.au/story/2097846/assault-leads-to-

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

can-stock-photo_csp16798247

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.

Stop Expecting Me To Apologize For Being Who I Am

Artwork by Jasmin Junger

Artwork by Jasmin Junger

“I am not “lazy” because I can’t function emotionally or mentally in the general work force.

I am not “weak” because I have a hard time processing emotions and am easily overwhelmed by the emotions of others.

“I am not a “recluse” because I prefer to stay at home where I feel most in control and safe.

I am not “anti-social” because I cannot handle large public gatherings and can only handle one or two friends at a time.”

I am not “stupid” because I cannot understand some math concepts and have a hard time with my handwriting and communicating verbally at times.

I am not what you want or need me to be

I am Autistic and I don’t have to apologize for that to anyone.”

These powerful words  by http://lennemi.wordpress.com represent  the way many with Autism feel about the overwhelming expectations placed on them by a society that refuses to accept them for who they are and instead replaces understanding with often cruel and ignorant  judgements.

lennemi’s words have been reproduced on this blog with the full permission of the author.

They are part of a brilliant post which I urge you to find here   http://lennemi.wordpress.com/2014/07/02/autistic-what-i-am-not/ 

Changes to Disability Support Payments in Australia

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Recently Tony Abbott announced changes to the Disability Support Pension that included differentiating between those who experience a permanent, lifelong condition and those who experience a temporary disabling condition. Personally, as much as I detest many of his policies, I’d have to say that I applaud this one.

I’ve lost count of the number of people I’ve known who are still claiming the DSP for conditions that they no longer have. I grew up with an uncle who, from the age of 30, was on a DSP for a temporary back injury that cleared up over time. Yet even though the injury no longer affected him, (in fact, he used to cut and sell firewood on the side), he still collected his DSP every fortnight. And to the best of my knowledge, all these years later, is still doing so.

Even closer to home the woman down the road, in her 40’s has been on DSP for the last 7 or so years, similarly for a back injury, and yet she can push a lawn mower, work from dusk til dawn in her garden, lug groceries and great armfuls of firewood in winter. Now I’m not saying that she doesn’t suffer pain at times, because she may well do, but what I am saying is, that if she can do all of those things, then she, like my uncle, clearly suffers no permanent disability.

My son, on the other hand,who has several genuine and life long health conditions ( including Autism), which are considered to be permanent disabilities, has to jump through umpteen hoops just to try and qualify for that which I routinely see others receiving for no reason other than the fact that nobody has bothered to check to see if the initial condition, which qualified them for the DSP in the first place,  is still preventing them from working years later.

So I’m all for reviewing and changing the DSP if it means that those, who once may have genuinely required those payments, but no longer do, end up being reassessed for the legitimacy of their payments.

I’m all for supporting people in genuine need and for genuine reasons, but in reality, claiming a Disability Support Payment when you do not indeed have a disabling condition, is FRAUD and it should be acknowledged as being so.