Girls with Autism / Asperger’s Syndrome and Pathological Demand Avoidance (PDA)

Art work by Aegis Mario S. Nevado
Art work by Aegis Mario S. Nevado

There’s wonderful documentary called “Girls with Autism” that’s just been released and in it, for perhaps the first time ever, the  girls themselves, their parents, carers and teachers, all speak openly about the realities of having Autism and the behavioral issues that some of them face within their everyday lives, including the very real and significant impacts that Pathological Demand Avoidance (PDA) has on them.

Pathological Demand Avoidance ( PDA) is real.

And how do I know that it’s real?

Because I live with the consequences of PDA every single day of my life due to my daughter’s experiences with it.

So I am thrilled to see this often debated aspect of Asperger’s Syndrome / Autism finally being so openly accepted and discussed within a format that has the potential to encompass a worldwide audience.

Firstly, let me make it clear that not everyone with Asperger’s Syndrome / Autism, will also experience Pathological Demand Avoidance.

I’m an adult with Asperger’s and I don’t experience it.

My daughter, on the other hand, who also has Asperger’s, does.

For many years I struggled to understand why my daughter’s behavior was so different from my own, when we both have Asperger’s Syndrome.

I mean, surely the fact that we shared a similar way of looking at and experiencing the world, should have meant that we’d be more likely, not less likely, to be able to understand each other.

And yet, it did not.

I simply could not figure out how I could be so peace-loving and routine based, while she could be so explosively unsettled from day-to-day.

To me, our differences did not seem to indicate a similarity of diagnosis.

If anything, they seemed to argue that one of us required a completely different diagnosis altogether.

So great were our differences, that I began to feel that we couldn’t possibly both have Asperger’s Syndrome.

Something was going on with my daughter that could not be explained by the outlining of our understandings of Asperger’s Syndrome alone.

I became so bothered by our differences that, back in 2012, I began writing a few articles which sought to explore and explain why I felt the differences between us were so significant and what such differences could potentially mean for many on the Autism Spectrum.

You can find those posts here https://seventhvoice.wordpress.com/2012/11/09/pathological-demand-avoidance-pda-and-autism/ and here https://seventhvoice.wordpress.com/2012/11/11/aspergers-syndrome-autism-and-pda-is-it-a-comfortable-fit/

Yet, when I first discovered PDA and began expressing my view that it might have been something that was affecting my daughter’s behavior, many adults on the spectrum became quite angry with me for doing so.

Many also suggested that PDA had always existed as a normal aspect of having Autism / Asperger’s and that I should leave it alone as all I was doing was simply adding another label to my daughter and in the process feeding the hungry bank accounts of psychologists.

Yet still I persisted and as I did so I began to understand that Pathological Demand Avoidance is both a very real and an extremely pervasive experience.

One that’s not only felt by those who are living with it first hand, but also felt by those who are trying to continuously deal with the fall out of it, second hand.

The level of additional understanding that PDA gave me, in terms of helping my daughter, was and still continues to be, utterly invaluable as it changed both of our lives for the better.

I went from constantly feeling lost and completely unable to understand my own daughter, (even though for all intents and purposes, given that we both have Asperger’s we should have been on the same page),  to feeling far more grounded, less to blame and completely able to figure out how to approach different aspects of her day-to-day life, without making her feel as if any requests I made of her were necessarily demands that she instinctively felt she had to avoid fulfilling at all costs.

Whilst some Autistic Adults still disagree and believe that PDA is a worthless label, I have found it to be quite literally,  a life saver.

To me it’s not just some sneaky little label that healthcare professionals have dreamed up in order to acquire more money, as some within the Autism community have argued, but rather a valid way of explaining why some individuals on the Autism Spectrum love and find comfort within a routine and why some either don’t or can’t find the same level of comfort in it.

Please, if you have the time, watch, “Girls With Autism” as it successfully debunks many of the myths surrounding Female Autism, PDA being just one of them.

 

 

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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?

The gifts of being an Asper Girl – Why obsessions aren’t necessarily a bad thing.

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The Girl who couldn’t seek skin

“She loved him, though no one knew why.

“He is not of her equal; not of her kind.”

But what no one knew,

Was this one thing:

She was the girl,

Who couldn’t see skin.”

Written by Coco .J. Ginger

Whenever I read these words, I instantly think of my daughter and of how Asper Girls just like her, have a tendency to develop such strong passions for people, places and things that often go well beyond the need to see skin.

Whether it be a favorite, toy, an item of clothing, a blanket, a pet or an animated creation  like the digital avatars found on the ‘Sims’, Asper Girls often seem to have the ability to create deep emotional attachments to things that other people find hard to comprehend.

As a result of their abilities to forge such deep attachments to inanimate  objects, their passions are often described as ‘obsessions’.

But I don’t think lumbering Asper Girls with the idea that they suffer from having uncontrollable ‘obsession’ does them any justice at all.

I think instead, that Asper Girls are not experiencing ‘obsessions’ but rather they are forming deep emotional connections to things in ways that others just simply may not be able to comprehend.

For my daughter, the sort of deep emotional connections to inanimate objects that she forms, are to be found within the characters she creates on the computer game the ‘Sims’.

She can and often will, if left unprompted, spend hours and hours, even entire days, creating their avatars, constructing their homes,  their gardens, their pets, their friends, their wardrobes and virtually anything else she can think of that might make them feel more comfortable in their pixellated world.

She talks to them, creates entire personal histories for them and has been known to lament for hours on end over the fact that she herself cannot speak ‘Simian’.

To her, these artificial beings are very much a part of her world and there’s no doubt in my mind that she has formed a deep emotional connection with them.

After all they have become her ever-present friends in a world in which her lack of understanding others, and their lack in understanding her, can often leave her reeling.

So her artificial friends, those silly little avatars that many would consider to be nothing more than brief flights of fantasy, provide her with a great source of comfort and connection, especially on those days when everything just seems to be too much for her.

So I don’t consider the affinity she has with the characters on her game to be signs of ‘obsessional behavior’ at all.

Rather I view the connection she has with her Sims as evidence that she not only has the ability to engage in imaginative play, but that she is also developing that rare skill of being able to take a vision from her mind and make it ‘real’.

In doing so I believe she is displaying the gift of creativity.

And in my book, there’s absolutely nothing wrong with that at all.