We’re Women with Autism – Not Mystical Imps, Sprites or Fairies….. Get it right.

Artwork by Devushka

Artwork by Devushka

Sorry to disappoint all of those who wish to believe that Women with Autism are made out of some kind of unique fairy dust that endows all of us with “special talents” or “super powers”, because we are not magical beings.

We are Women Wired Differently…. not Women Wired Magically.

Please stop confusing our different skill sets, ie, our tendency to focus on the finer details of life that often make us more likely to pick up on the inconsistencies that are usually hidden within the bigger picture that people present to us, with being the equivalent of having a “super power”, “gift”, “unearned talent” or whatever else some would like to call it.

The truth is, that for us, our intense focus on fine details, whilst it may have started out as a fascination, has also become a survival mechanism.

Our intense focus is not magical. It’s practical. It’s what we do when we can’t “read” a person’s level of sincerity simply by looking into their eyes, listening for and recognizing the tonality in their voice or knowing automatically whether or not a smile is authentic at a glance.

Yes we may see the world in ways that others do not, but it’s still the same world and we’re still viewing it with eyes that are made up of all of the same biological matter as everyone else’s eyes are.

Yes at times it may seem as if we see more, but that’s not because we’re psychic beings floating about in fairy dust, it’s simply because we look harder and longer at the simplest of gestures, in order to decipher and makes sense of them for ourselves.

When we feel an emotion, we often feel it deeply but that’s not because we’re “super empaths” or somehow magically connected to the pain of another, it’s because we feel in fine detail too.

Yes we have a degree of empathy for others that may run deeper than most, but that’s not because we’re psychic, it’s because we’re focused.

Just as we focus visually and intellectually on the finer points that others may have missed, we can also focus our feelings on the finer points of emotions that others may have by passed.

We feel all of our emotions often simultaneously specifically because we live our lives without the benefit of having the filters that other people apply to their thoughts, their feelings, even their ways of seeing.

Which is why we can become so overwhelmed by our emotions that it makes it difficult for us to talk about or even explain them.

The depth of our feelings does not make us magical beings simply because we can feel that which we cannot explain.

It in no way means that we are magical beings. It simply means that we are unfiltered beings.

We’re not made up of different stuff or fairy dust at all. We just don’t have a way of filtering out the world around us the way that other people do.

I know that some would like to believe that this state of affairs somehow also makes us “purer beings”…. but does it?

Does it really?

And isn’t the idea of “purity” also linked to “innocence”, which is also linked to “children”…. as in the “innocence of a child”…….

Just think about it. We’re not magical, we’re not pure and we’re not children. We’re Women who take in and understand the world differently simply because we see it differently.

Do we really want the realities of our lives as Autistic Women being overlooked and marginalized simply because we’re being linked to the infantile ideals and imagery that being viewed as either ‘supernatural’ or ‘overtly innocent beings’, brings along with it?

 

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?

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.

Acknowledging the Rights of Young Adults with Autism to Feel and Express Love

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Dear Support Services,

It has come to my attention that there’s an aspect of providing support for Young Adults with Autism that you clearly, as yet, do not fully comprehend.

So let me enlighten you.

Young Adults with Autism are first, and foremost, Young Adults.

This means that like all Young Adults everywhere on the face of this earth, they will be experiencing the same confusing hormones, feelings and emotions, that combine together to create the mystic soup called ‘Love’.

Young Adults with Autism are no different to anyone else.

They wish to both give love and to receive love in return.

There is nothing, what so ever, wrong, with their desire to do so.

The only area of ‘wrongness’ in this situation can be found within the barriers, rules and regulations support organizations try to put in place, specifically to ‘curtail’, the very normal responses of a group of Young Adults who all spend time with each other on a daily basis.

Young Adults with Autism, or indeed Young Adults with any form of recognized ‘disability’, are not criminals serving ‘hard time’ for crimes against humanity.

They are Young Adults and just like every other Young Adult in the world, they are simply trying to navigate their way through life.

Their desires to love and be loved do not constitute criminal offenses.

So why do so many support organizations display such an overwhelming propensity towards ‘revoking’, ‘denying’ or ‘banning’ the very human rights of the people they are supposed to be supporting?

And who decided that support organizations should have the capacity to ‘ban’ any and all expressions of a Young Adults need to feel loved?

It is clear to me that such antiquated ‘fear mongering’ in the form of ‘rules that seek to deny Young Adults the right to behave like Young Adults,’ actually do nothing to support the growing needs of the first en mass wave of Young Autistic Adults now entering our society.

For this reason it is crucial that we speak up.

We cannot, either as a society or as individuals, encourage the belief in our Young Adults that they have the same rights as everyone else whilst allowing support agencies to continue to put strategies in place aimed at negating our Young Adults rights to express Love.

It’s up to us to speak up.

To say to those who are working within Support Agencies:

Please stop trying to ‘legislate against’, ‘contain’, ‘remove’, ‘ban’ or in any other way stymie or deny the rights of Young Adults with Autism to ‘Fall in Love’, ‘date’ or ‘fraternize’ with each other, within your organizations.

It is not your job to ‘prevent’, ‘curb’ or ‘deny’ Young Adults with Autism, their very human right to engage in, or experiment with, their desires to experience romantic Love.

It is, however, your job to provide them with the additional supports they require in order to be able to spread their wings and fly independently within every possible area of their lives.

And not just those areas of their lives that support agency staff feel comfortable in acknowledging.

Young Adults with Autism hold the capacity and the desire to both love and be loved.

Isn’t it time we demanded that our support services acknowledge this truth and work accordingly to both accommodate and support our Young Adults with Autism in every aspect of their lives.

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.

Understanding the Calculus of Communication – Counting the Cost of Getting Lost.

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Do find yourself becoming bored when others talk excitedly about ‘sales’, ‘the latest fashion trends’, ‘bargain basement make up prices’ or ‘who said what about whom’?

Do you often feel like you’re the only person in the world who doesn’t understand why family, friends and large pockets of society become excited over minor events or inconsequential trends?

Do group conversations confuse you?

Do you find yourself still pondering the first topic of conversation while those around you move on to talk about other things?

Do you either miss or misinterpret sudden changes in tone of voice, facial expression or body language?

Do you sometimes feel as if you are always the last person in the room to get the joke? Especially if it’s illogical or cruelty dressed as humor?

If you’ve ever felt, even one of these things, then perhaps you’ll be able to understand (or calculate) just how confusing and disparaging social interactions can be for someone with Asperger’s Syndrome.

For many years I used to tell others that I had a low ‘social IQ’.

The problem with trying to explain my social difficulties in such a way were two-fold; either people wouldn’t understand the concept of having a ‘low social IQ’ or they’d assume that I’d tried to make some kind of awkward joke.

I’d often wonder why it was that people would believe that I’d waste my time making fun of, what for me, was (and still is) a very real difficulty.

This inability to stay afloat in social situations, despite working so hard internally to do so, alongside the social expectation that I should always be seen to be able to do so (pretend), or risk rejection as an inept social outcast, still bugs me.

Sometimes it felt as if everyone else has been born with some innate social rule book hardwired into their brains.

Everyone that is, except me.

Yet, whenever I’ve analyzed these feelings of ‘being different’ of not knowing the rules, I’ve found that the analogy is not entirely true.

Because, if the ability to communicate socially were simply just a matter of learning the right rules, which is a task that I am usually good at, then I’d be able to learn those rules, internalize them and move on in much the same way that I’d learned and internalized academic concepts.

Therefore, social interactions are not just about knowing the rules or knowing when to nod in all the right places or learning when to send forth a smile or scatter a frown here or there.

numbersThey appeared to be both so much more complex to me and yet somehow so much easier to navigate, than understanding calculus is, to others.

So I decided to draw on the calculus analogy when trying to explain just how difficult I found social interactions, particularly in group settings, to my family and friends.

I’d ask them if they’ve ever thought of math whizzes as people who have somehow been born with an internal calculator.

One that not only instantly enabled them to recognize what sort of math problem they’re dealing with but also simultaneously provided them with exactly the right formula to apply in order to solve any given mathematical equation within seconds?

Then I’d ask them to imagine how they’d feel if they suddenly found themselves sitting in a room full of math whizzes who are all busily going about their day, solving their respective math problems and chatting to each other about the life of Pi?

How would they feel about their own math skills if they were to find themselves in such a situation?

Would they try and convince themselves that they are just as good at maths as every math whiz in that room or would they admit that they feel like they’re in the wrong room and there’s no way they could keep up?

Most people, I’ve found, seem to be able to relate to the experience of feeling lost, if not awkwardly confused, or completely disinterested in performing or talking about the joys of mathematics.

So, once they’d admitted that they’d feel awkward, lost or disinterested, I’d tell them that I find social interactions, especially in group settings, every bit as difficult as they’d find it to be in a room full of math whizzes, because to me, trying to keep up with the flow of their ideas, as well as trying to interpret the tone of their voice and the meaning of their facial expressions simultaneously, was just like being expected to suddenly solve a complex mathematical equation whilst discussing Pi.

It’s hard work for me.

I can’t instantly look at someone who’s smiling and know if it’s a real smile or a false smile.

I have to work it out.

In just the same way that most people admit they’d be bored witless and unable to participate if they were surrounded by people who only wanted to talk about Pi, I can’t see the point of participating in a conversation that I can’t understand or view as boring.

When it comes to social interactions, particularly conversations, I don’t have that internal social rule book, so to me conversations can be hard work.

As much hard work as it would be for most people to sit a spot calculus exam.

Yet it seems, everyone else still has the advantage because only one of us is being constantly expected to be delighted with both the prospect and the reality of having to sit that spot calculus exam every single day.

Social communication obviously isn’t as difficult as engaging with calculus to most people, if it were; they wouldn’t continue to do it.

Nor would they expect others to treat them differently simply because they lacked the ability to fully understand, appreciate or enjoy chatting about, calculus.

And yet……..

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.