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.

 

Autism – We Share A Label – Not A Life

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Each and every person lives a life that is unique to them. Therefore, even though we may all experience life with Asperger’s / Autism, it does not automatically follow that we also experience every  aspect of  ‘life’ or Autism, or even ‘life with Autism,  in exactly the same ways.

One person’s lived experience, knowledge and truth, is exactly that.

One person’s.

We are all born into different circumstances.

We all have different experiences, learn different lessons and gleam different aspects of knowledge and truth, based on these experiences.

Sharing similar ways of interpreting or understanding the world around us, is not the same as ‘living the same life.’

We share a diagnostic label, not a life.

Please recognize and respect this fact and stop trying to ascribe the understandings, beliefs and personal preferences of one individual with Autism, to all individuals with Autism.

We are not mirror images of each other.

We are all different.

And we deserve to have our differences understood and treated with respect because our differences matter.

For example, the experiences of an adult female, diagnosed later in life, will be very different to those of an adult male, diagnosed early in life.

Whilst one may have grown up feeling ‘lost’, ‘alone’ or made to feel ashamed of her differences, the other may have grown up with all the benefits of self-understanding, self-awareness and being encouraged to take pride in his ‘different-ness’.

While each individual’s experience needs to be understood as being equally valid interpretations  and expressions of what it is to live an Autistic life, they also equally need to be understood as being validly different.

The act of preferencing one set of experiences over the other, leads to the negation of not just one narrative, but to the negation all narratives that do not fit neatly within the confines of that which becomes the preferred story of the‘ Autistic experience’.

Just to be clear on this, there is no correct way to experience Autism.

There are instead, many equally valid, equally real and equally genuine ways to experience Autism.

Yet some within our society continuously seek to preference and promote only one particular version of Autistic life.

We cannot and should not allow either ourselves or others, to fall into the trap of ‘negating’ the many difference to be found within in the Autistic experience, simply because it’s being presented to us under the guise of ‘creating Autism awareness.

All Autistic experiences are valid regardless of age, gender or socio-cultural and economic influences.

To believe that any one experience is any more important or worthwhile than another is to perpetuate both the myth that there is a ‘correct way’ to experience Autism, and that all ‘Autistic people are the same.’

We’re not.

We share a diagnostic label.

Not a life.

Is life easier for Autistic Women than it is for Autistic Men?

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I’ve just read yet another post stating that women with Autism have it easier than men with Autism because they are better at ‘masking’ their behaviors.

This is a gross over statement.

Not all women with Autism are brilliant at ‘mimicking’ others.

Not all women with Autism engage in ‘masking’ behaviors.

The continued, unquestioning, promotion and legitimization of the notion that all women with Autism willingly comply with such stereotypical codes of behavior does us no favors at all.

If anything, one could argue that such ideas do little more than create another rod for our backs as they are fast being employed as yet another diagnostic benchmark to determine whether or not a woman has Autism.

The problem with these ideas is that they avoid or sidestep the simple truth that women were not allowed to express feelings of difference in any positive, meaningful way, prior to the understanding that women could experience High Functioning Autism (Asperger’s Syndrome) right along side men.

In other words, prior to the discovery that women could have High Functioning Autism, Autistic women had to ‘pretend to be normal’ or else risk being labelled with some catastrophic mental health disorder and possibly locked away.

Given the same choices today, pretend to be normal or be prepared to be locked away, most women would choose to pretend.

However, the need to pretend no longer exists and it no longer exists because psychology has finally caught up with our current day reality, and in our current day reality the need to pretend no longer exists because we’re no longer going to be locked up simply for being female and different.

It’s a horribly circular argument, but  the point is that in the past women with Autism may have had a  perfectly logical rationale for pretending to be normal.

Today that same rationale no longer applies.

Many of us don’t feel the desire to ‘mask’ or ‘conceal’ our behaviors.

Some of us have rarely, if ever, intentionally ‘masked’ our opinions or feelings simply for the sake of wanting to appear as though we ‘fit in’.

It is true that sometimes I will choose to remain silent on a topic, but that’s about as close as I get to engaging with, what some might call, ‘masking behavior’.

The strange thing is, that whenever I deliberately choose to remain silent, I’m not doing so to fit in.

I’m usually doing so out of respect for other people’s feelings.

For example, if person A is talking about a topic that I recognize they have a strong emotional connection too, then even if I do not agree with, or fully understand their point of view, I will choose not to say, as I would if we were discussing a topic to which they had no emotional bond, ‘I don’t agree with you.’ Or ‘you are wrong’.

I may still be thinking it, but I will not express it , as to do so would be to challenge, not just their logic, but also their emotional responses to the topic.

I, like most people, do not like having my emotional responses to things challenged.

It hurts.

Given that I know that it hurts, I choose in-turn, not to hurt another by engaging in an action that I know hurts me.

This to my mind, does not provide evidence that I am engaging in ‘masking’ behavior.

To me it indicates that I have the ability to show empathy, respect and compassion for another person.

The fact that I am not so ‘mind blind’ that I’m unable to consider another person’s feelings, regardless of whether or not I share their opinions, does not mean that I am engaging in ‘masking behavior’.

To me, the act of showing compassion is not, in and of itself, ‘masking behavior’.

It’s human behavior.

And to be perfectly frank, the ability to show compassion does not make it any easier for me to understand why people choose to cling to faulty logic in times of need.

Nor does it explain to me the reasons why people become so tied up in their emotions that they fail to follow clear and logical thought process during the very times that they most need to.

So in reality, I’m still just as confused by people’s lack of logic, or their inability to apply logic when it’s most needed, as males with Autism are.

The only potential difference that gender may make in this circumstance is that, as a female, I am sensitive to the prospect of causing emotional harm to others.

This is because I know exactly what it feels like to be on the receiving end of anothers thoughtless ‘emotional harm’.

So too, do the thousands of women who’ve endured the ‘emotional harm’ that the denial of the truth that women, as well as men, experience Autism, has caused them.

Is life any easier for women with Autism than it is for men?

No, it’s not easier but it is getting better.

It’s getting better because we no longer have to pretend to be anyone or anything other than who and how, we are.

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?

 

This is what it is like to live with Chromosome 19 p13.13 and p13.12 Deletions.

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Deletions of chromosome 19 p13, in any form, are rare. Due to this, little is known about their effects on the human body within the scientific community.

Because there’s so little understanding of the effects of these deletions within the scientific community, there’s even less understanding, awareness and support for those who experience them, within the broader community.

My son has two chromosome 19 deletions which are found on the cytogenetic band p13.13 and p13.12.

This makes him a genetic rarity.

But my son would be the first to tell you that being rare is no fun at all when it comes at such a high physical and emotional price.

So this post is aimed at raising awareness of chromosome 19 p13 deletions within the broader community by providing information about their symptoms and the impacts they have for those, who like my son, live with their effects every day.

From the few studies that have been conducted on individuals with chromosome 19 p13.13 deletions, geneticists have been able to accumulate a list of conditions and symptoms that arise as a consequence of these deletions.

Known symptoms and conditions include nystagmus, vertigo/extreme dizziness, ataxia psychomotor delay, intellectual delay, gastrointestinal abdominal pain, vomiting, hypotonia, dyspraxia, epilepsy, and other neurological symptoms and a wide range of developmental and speech delays.

To put this list of symptoms into some form of context, my son has all these conditions.

Several, like vertigo, nystagmus, ataxia, dyspraxia, and abdominal pain, he experiences on a daily basis

Others, such as Migraines, vomiting and other neurological symptoms, he experiences weekly or even monthly.

All of these conditions, with the exception of epilepsy, which ceased affecting his life at the age of 7 for no apparent reason, are expected to affect him for the rest of his life.

In other words, his chromosome 19 deletions create health conditions for him that will never go away.

Which is why it’s vitally important that our society as a whole begin to develop an understanding of the way in which these deletions impact on the lives of all those who carry them.

Yet, I have found, that despite being able to list his symptoms and provide verification of their existence, trying to get others to understand and support my son in his daily life, is another matter entirely.

So, in order to try and increase awareness and understanding, here’s my attempt at providing a few hopefully, easily relatable examples of what it’s like to live a life with chromosome 19 p13 deletions.

Okay, here we go.

Have you ever tried to watch a movie or a TV show when the image keeps jumping up and down on the screen?

It usually ends up making you feel like you have motion sickness, right?

So you either turn the movie off, or fix the tracking so that you can see it clearly.

But, what if it’s not the tracking on the screen that’s the problem but the inability of your own eyes to accurately track everything you see?

What then?

How would you turn your tracking problem off?

Well, you could try closing your eyes and choosing never to look at anything ever again.

Apart from that, there’s absolutely nothing what so ever you can do to try and turn your tracking problem off because although nystagmus affects the eyes, it’s actually a neurological condition.

So, short of wearing a blindfold, you’ll have to accept that no matter what you do, or how much you want it to stop, your life will always be flicking before your very eyes.

This is what it’s like for my son to live with vertical nystagmus.

His world quite literally jumps about on him.

On a bad day, his rapid eye movements cause him a great deal of pain and he’ll often press his fingertips into his eyes until they pop, just to try to relieve the sense of pressure and pain it causes him.

Moving on.

Have you ever had that awful sensation of ‘light headedness’ that you get sometimes when you stand up too quickly and the world seems to swim and spin beneath you?

You know, the kind of dizzyingly disorienting sensation that makes you have to stop what you are doing for a few minutes, close your eyes, and wait until the feeling passes before you can go about your day?

Well for my son, that feeling of dizzy, light headedness or vertigo never goes away.

So on any given day, his vision is impaired; he’s dizzy, feeling light-headed and perhaps just a bit nauseous.

Then there’s the ataxia. The inability to control fine and gross motor muscle coordination.

So now, if you’re trying to imagine what it’s like to be my son, – you can’t see straight, you’re dizzy, feeling light-headed, nauseous and you can’t control your limbs.

If you’ve imagined yourself experiencing all of those things, then you’ll now have some idea of how the first triad of conditions, listed as being symptoms of p13.13 deletions, affect my son every day of his life.

Now imagine how difficult the combination of these symptoms make carrying out, even the simplest of tasks, for him?

Some mornings his vertigo and ataxia are so extreme that he cannot even manage to coordinate his limbs well enough to feed himself.

Given this, maybe you can also begin to imagine how much of a challenge attending college is for him.

The amount of effort and determination required just to be able to walk, talk, navigate and participate in college classes, while feeling this way, is enormous.

Yet every day he says that he wants to go to college.

Even though he gets growled at by staff and laughed at by other students for having to lean against the walls just to get from class to class.

Can you imagine how it must feel for him to be growled at for doing the best that he can?

Can you imagine how it must feel to know that no matter how hard you try, sometimes you just can’t do what’s being asked of you by your teachers because your body simply won’t let allow your limbs to coordinate themselves enough to even pick up a pen, let alone write anything down?

Then imagine what it would feel like if, while experiencing all of these things , instead of being offered any form of compassion, understanding or support, you’re told to go and sit outside, alone, in the corridor, until you feel better?

Great, now perhaps you can imagine exactly how frustrated, confused and let down my son feels every time his teachers respond to his difficulties in this way.

Not only does he have to deal with all of his health conditions, he also has to deal with ridiculous levels of ignorance and intolerance, from those who are supposed to be supporting him.

Yet it’s not just his teachers who show him such a lack of compassion and support.

It surrounds him virtually everywhere he goes.

His classmates accuse him of “bunging it on” to try and get out of school work.

His friends get angry with him for being “dizzy” all the time and ruining their fun.

Strangers stare and glare at him as if he’s doing something criminally wrong whenever he can’t walk a straight line and has to hold my arm for support.

Yet worst of all for him, is the level of constant negation that he experiences at the hands of health care professionals, who know nothing at all about chromosome 19 deletions, let alone understand the severity of the migraines he experiences or comprehend just how draining it is for him to suffer constant abdominal pains, for which, in their ignorance, they can find no cause for.

He cannot understand why the doctors aren’t helping him.

He cannot understand why his eye doctor can’t find any reason for his eye pain, let alone treat it.

He cannot understand why he’s being told that they can’t find a reason for his abdominal pain, when he knows for a fact that his abdomen hurts.

Some days a lot.

He cannot understand why, when he has so many health conditions to contend with, he see’s other people, with lesser issues, getting the help, support, understanding and acknowledgement for their issues, when he gets none.

He gets upset when he see’s reports on TV about children with rare conditions because he wants to know why no one cares about him and his rare condition.

And I, for my part, have no answers to give him.

All I can do is console him and remind him that I am doing my best to help others understand his needs.

But I’m just one person and so far, I’m not making much of a dent in the wall of ignorance, which surrounds his condition.

I am doing my best but progress is slow.

I know that my son is growing ever so tired of constantly feeling like he’s the only one.

So maybe, just maybe, this will help, a little.

Thank you for taking the time to read this and if you or anyone that you love or know, has a chromosome 19 p13.13 or p13.12 deletion, then please feel free to make contact.

Mae

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.”

 

 

Free Community Library – Made by book lovers for book lovers

Books to read

Over the years, like many small towns,  the vacant spaces in our local shopping center have grown exponentially.

Leaving great gaping holes of emptiness that serve only to remind us that this once was a thriving mall. Filled with all the things that we as consumers could possibly need and many that we didn’t too.

To address the yawning gaps of desolation confronting shoppers,  a bright spark at the mall came up with the brilliant idea of turning one of the empty spaces into a community library.

The idea is that you leave a book of your own on the community shelf  for someone else to enjoy and in return you choose a book that someone else has left behind.

There are no sign up fees, no late fees and in fact there aren’t even any requirements for you to leave your name and details at all.

It is a system of book borrowing that is run purely on trust and it’s working brilliantly.

In the space of 8 weeks the community library has grown from having four shelves filled with books  to now having run out of places to house the many books donated.

It is quite literally over flowing with well-loved and good quality books and people too.

It’s become a space in which complete strangers can suddenly find themselves discussing their favorite authors and recommending books to each other.

Many people, like me, have donated entire boxes of their favorite books to the cause.

You know, the kind of books that you’ve loved so much that no matter how many times you’ve moved house, you’ve never had the heart to sell them in a garage sale or donate them to a charity where they’ll be stuck on a shelf and perhaps never loved again.

But then the community library comes along and suddenly you find that you are ready to pass your books on  because you know that you are passing them on to a place where other book lovers are sure to find and appreciate them.

Personally, as a book lover, I find this solution to the emptying out of the mall to be a truly beautiful one and one that shows that people can and will co-operate and share unselfishly with each other without the need for any form of  ‘organizational supervision’.

Lets face it, it’s a great idea.

So if you’re living in a town with a few too many empty shop spaces around you then why not give the idea of creating a community library a go.