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.

 

 

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?

 

Autism – What will I gain from being diagnosed later in life? It won’t change anything for me, so why should I bother?”

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People often ask me: “What will I gain from being diagnosed later in life? It won’t change anything for me, so why should I bother?”

Well, my answer as to whether or not anyone should “bother” to get diagnosed is this.

Firstly, on a purely personal level, it depends entirely on what your personal circumstances are and what the biggest issues are that you’re facing at any given point in time.

If you’re a person who’s main problem is that you’re always feeling misunderstood or blamed by your family member for being the way that you are, then perhaps receiving a formal diagnosis may help your family members to comprehend and accept that some of the onus for understanding both who and how you are, falls upon them to make more of an effort to accept you as you are, rather than allowing them to continue to always view you as being the one who needs to change.

Secondly, if you find that you may be in need of some form of formal support or assistance, then receiving a diagnosis may help you to better be able to access whatever support systems are in place within your area.

A diagnosis should also, at the very least, help others around you to become aware that you are genuinely more in need of care, understanding and support than they had previously thought.

Thirdly, if you want to increase your own levels self-understanding and awareness or further seek to validate your own understandings of yourself as being both true and accurate, then receiving a diagnosis may also provide these assurances for you.

But, if you are a strong-willed person who is confident enough to be able to self-identify with having Asperger’s, without feeling any twinges of doubt about it what so ever, then you’ll most likely feel that either the seeking out, or the receiving a diagnosis, is not for you as it holds little potential to offer you any great benefits.

And that’s okay.

But for me, I have found that those who benefit the most from older women such as myself coming forward and being diagnosed, are the generations of girls who are yet to come and the generation of girls and women who are still today, young enough to incorporate this deeper understanding of themselves as females who are Autistic,  into their daily lives and move on.

At my age, receiving a formal diagnosis offers me purely the ability to understand myself better and enables me to finally ask for the things I’ve known for so long that I’ve needed all of my life, things such as solitude, peace and quiet, but have never been made to feel as if it were okay for me to ask for these things, because I am a woman and women are supposed to love company and to always want to be social creatures.

I had no way of explaining to anyone, let alone myself, why I’ve always felt that I needed so much time alone.

Yet for girls of my daughter’s age, receiving a diagnosis is offering them so much more.

It is offering them the opportunity of being able to grow up with the gift of truly knowing not only who they are, but also understanding how they are, and that they’re okay.

That it’s okay to be different.

And this to me, as both a woman and a mother, is the gift of understanding that I truly believe is worth fighting for.

I am so glad that there were women in the past who had the strength, courage and forethought, to lead the way forward and to lay the foundations that so many of us today are now standing on, by arguing, on our behalf’s, that High Functioning Female Autism is a very real phenomenon.
Believe me when I tell you that I am all too aware that if no woman had ever dared challenge the male based status quo of the understandings of Asperger’s Syndrome of the past, that neither my daughter nor I, would now be diagnosed.

So how exactly does receiving a diagnosis later in life help anyone and what does it solve anyway even if you do get one?

Well, for one thing, it is likely to allow many women to make sense of their pasts.

To knit all of the previously unresolved elements of their lives, their personalities, their characteristics and their traits, into some semblance of a perspective that will finally make sense to them.

So if that one singular perspective that makes sense of your life is the one thing that you’ve been missing, then getting a diagnosis, even at a much later stage in life, can still provide you with a huge feeling of relief.

In terms of gaining greater access to benefits and assistance, if you are already financially secure or successfully working, then no, receiving a diagnosis later in life, may not help you in any way in terms of on the job support training and alike.

But what it will do, is benefit your children, and your children’s children.

And if you’re not a mother yourself, then please understand that your actions and your choices, may end up benefiting your sister’s or your brother’s children.

The knowledge and validity that we as women gain from receiving a formal diagnosis, could well prevent future generations of girls from having to put up with the kinds of constant bullying that are caused by male bias ignorance.

This will enable them to grow up holding all of the answers to all of the questions that we once, as children held locked inside of our own heads, like fragile eggs, and were too afraid to ask why it was that we were so different from everybody else.

If being diagnosed later in life can help to take away from another child, that awful sense of confusion and self-loathing that comes from knowing that they don’t belong, without ever fully knowing or understanding why, then I’m all for it.

So whilst a formal diagnosis may not seem to be such an important deal individually, in the grand scheme of things, I can see how each and every woman and girl, diagnosed today, can help create a stronger, better defined and more brightly lit path, for our Autistic girls of the future to walk upon.

Unlike us, they won’t have to spend over half of their lifetimes stumbling around in the deep and uncertain dark, and that’s a good thing.

I’m not sure whether holding ideas like these makes me a dreamer, or simply yet another deluded fool.

Either way, the more women and girls who are diagnosed today, the harder it will be for the powers that be, to dismiss the needs of Autistic Women in the future.

I understand that this way of looking at things is not everybody’s cup of tea, but it certainly is mine. So comment and let me know whether or not you agree.

Autism Is Not Gender Specific – Our Society Is….

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The labeling of  Women who do not fit neatly within the confines of society, as being ‘nutty’, ‘weird’, ‘batty’, ‘anti-social’, ‘loners’, ‘reclusive introverts’ or ‘eccentric’, when they may indeed be experiencing undiagnosed Female Autism, creates the kind of life long harm that ensnares Undiagnosed Autistic Women forever, within the confines of an artificially imposed, yet personally experienced prison, of societies making.

It’s high time that  the name calling, isolation and double standards that lead to the abandonment and  misdiagnosis of Women with undiagnosed Autism stopped.

It should no longer be considered acceptable for our society to be encouraged to acknowledge only those presentations of  Autism that fit within the confines of Male Autism.

Autism is not a Male only condition.

Yet still today, if a male exhibits peculiar behaviors, or behaviors that are viewed as being out of the norm for males, they are automatically considered for an assessment of Autism. 

Their behaviors are both attributed too, and understood as being part and parcel of  the presentation of Male Autism, even before that assessment takes place.

As such, Autistic behaviors in males are considered excusable, simply because it’s perceived that they may be on the Autism spectrum.

Yet, when a Female exhibits similar sets of peculiar behaviors, or behaviors that are viewed as being out of the norm for females,  she’s considered by others to be ‘weird’,’ unruly’, ‘unfeminine’,”highly strung’,’ intentionally disruptive’, ‘rude’, ‘bossy’ or ‘deliberately seeking attention’.

The one thing  Women’s behaviors  never seem to be automatically considered for, is an Assessment for Autism.

As a result, most Females on the Spectrum (either diagnosed or undiagnosed)  are often punished socially, emotionally, economically and psychologically,  for behaviors that they themselves may have no idea are unwelcome or are breaching social expectations.

Many girls and women are not even aware that they are on the Autism Spectrum until much later in life.

Nor unfortunately, are the people who often surround them in their daily lives.

Even their families, friends and peers often fall into the trap of  re-attributing or reconstructing,  the traits of Autism in  Women, as personal behaviors that arise due to a perceived lack of self-discipline, ambition, sociability, maturity and in many cases, even sanity.

In short, when it comes to Women and Autism, it still seems that the overwhelming propensity amongst many in society is to perceive Female Autistic traits as evidence, not of Autism as they do in Males, but as evidence of some kind of personal female weakness, fault or issue.

This results in the re-labeling of Female Autistic behavior as being anything but…Autistic.

It seems that it is still far easier for those within our society to re-label Autistic Women with any number of demeaning personal faults, than it is to open their eyes to the possibility that the rates of Autism amongst Women, particularly older women, are much higher than anyone dared previously imagine.

Autism is not Gender Specific and therefore, nor should our understandings of it be.

The Gas-lighting of Women and Girls on the Autism Spectrum

Artwork by Mirella Santana

Of all the traits attributed to Women on the Autism Spectrum, there remains one that not only continues to go unrecognized as a valid trait but has also suffered the fate of being reconstructed by professionals as a rationale for denying Women a diagnosis.

The trait I’m referring to is that of developing a strong sense of self-awareness.

In almost every description pertaining to the experiences of Women with Asperger’s Syndrome there is evidence of the development of an early, inexplicable sense of ‘otherness,’ to be found.

This sense of ‘otherness’ expands exponentially as girls grow older and develops into a keen sense of self-awareness.

Their strong sense of self-awareness in turn, increases their sensitivity toward any and all experiences that suggest or confirm their perceptions of themselves as different.

Undoubtedly, whilst at school, undiagnosed spectrum girls will find themselves showered, almost daily, with an endless array of situations that expose their responses and reactions as differing from those around them.

As a result, many spectrum girls may find it difficult to relate to their peers and feel that they have very little, if anything at all, in common with them.

Given that young girls are not yet bound by the pressure to conform, many will quiet happily choose to pursue their own interests instead of seeking to feign an interest in the activities of their peers.

Early schoolyard experiences can therefore be seen to reinforce and exacerbate the already strong sense of ‘otherness’ that many young girls on the spectrum feel yet do not necessarily view as being an issue for them.

It is not until the teenage years arrive that ‘feeling different’ truly becomes an issue.

During this time, the combined weight of parental, peer and societal pressures to conform begins to bear down on them.

Suddenly they find that any and all previous levels of tolerance and acceptance towards their uniqueness of being, are replaced with the message that their right to happily pursue their own interests, has been irrevocably and irrationally rescinded without their consent.

Now they are expected to act like everyone else and enjoy participating in only those activities that are deemed appropriate for teenage girls to engage in.

These radical and unexpected changes usher in a period of overwhelming personal confusion and sensory overload as the ability to escape into their own comfortable zones of ‘personal interest’ are stripped unceremoniously away from them.

During this time, some Spectrum girls will begin to experience melt downs due to not being able to escape either the sensory or the emotional pressures that surround them.

Often these meltdowns will mistakenly be viewed as deliberate acts of rebellion and punished accordingly.

Some spectrum girls, on the other hand, will set their minds to the task of trying to figure out exactly what the new rules of engagement are in order to seek out any loopholes that may still allow them to continue to pursue their own interests without falling foul of their peers.

This is often a process of trial and error which still has the potential to attract punishment for any and all inadvertent social infractions.

Yet no matter which option an undiagnosed teenage girl chooses the consequence all tend to lead to the same experience of psychological harm.

Psychological harms experienced include:

An extreme sense of personal disorientation

Confusion over what has taken place.

Erosion of their formerly strong sense of self.

Self-doubt.

The onset of the belief that being different is equivalent to being wrong.

Creation of the belief that no one will ever like them for whom and how they truly are.

Acceptance of the idea that they cannot be themselves and still be liked.

The combination of all of these psychological harms explains the overwhelming sense of social confusion, lack of self-esteem, lack of confidence and the propensity for self-doubt that many (both diagnosed and undiagnosed) adult Autistic women report experiencing.

It is worth noting that all of the negative messages that undiagnosed Autistic girls/women experience whilst growing up, produce the same responses that one would expect to find in an individual who has been the victim of prolonged emotional and psychological manipulation or abuse.

Another term that has more recently been applied to describe the way in which this form of emotional and psychological manipulation can be subtly delivered is Gas-lighting.

Gas-lighting is renowned for creating a sense of personal disorientation and self-doubt in those to whom it is applied.

Yet sadly, the process of gas-lighting for undiagnosed teenage girls does not end upon their reaching adulthood.

For many women who recognize themselves within the folds of female Autism later in life, the process of seeking understanding and validation in the form of a diagnosis from a professional, often leads to yet another round of gas-lighting.

If a woman expresses the capacity to recognize and understand that she may be Autistic, she’s then told by professionals, that she’s too self-aware to be on the Autism Spectrum and is summarily dismissed.

If a woman expresses feeling that she may have been let down by others or betrayed by a society that only values certain ways of being, she is told by professionals, that she has a persecution complex and is summarily dismissed.

If a woman expresses the capacity to feel love, empathy or even hints at the potential for having a sense of humor, she’s told by professionals, that she can’t be on the Autism Spectrum as Autistic people (according to some) lack the ability to feel any of these things.

If a woman’s married, in a relationship or has children, she’s told by professionals, that she can’t be on the Autism Spectrum as she obviously has both the capacity to maintain a relationship and care for others. Autistic women (supposedly) cannot do this.

If a woman is single, reclusive and/or unemployed, she’s told by professionals, that she’s suffering from depression and that all of her other issues will go away once she begins medication and starts getting out more.

And worst of all, if a woman is educated, articulate and well-informed about Female Autism and why she feels she belongs within it, she’s often told by professionals that she’s making things up about herself in order to gain attention and is instead diagnosed as having either a Personality Disorder or Bi-Polar Disorder.

The tendency of those within the psychological profession to constantly deny the validity of an Autistic woman’s understandings of herself by instead reinterpreting and reinventing her words as evidence that she is too self-aware to be on the Autism spectrum, is in itself, the ultimate form of Gas lighting.

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?

Are Women with Autism evading diagnosis?

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“In the absence of significant intellectual or behavioral problems, girls with ASD-like traits are more likely than boys to evade a diagnosis of ASD.” Spectrum.

Academics, researchers and professionals’ need to stop using terms such as “evading diagnosis” and “masking symptoms” when discussing female Autism.

In essence, what they’re really discussing when they apply terms such as these, are their own inabilities to correctly identify Autism in women.

There is absolutely no value to be found in perpetuating the myth that women with Autism run around wilfully trying to avoid detection simply because professionals have become lackluster within the confines of  their own diagnostic processes.

As a woman with Autism I can tell you that we are not running around trying to avoid detection.

Nor are we, in our daily lives, actively striving to “evade” diagnosis.

In fact, we’d actually quite like it if all professionals developed the ability to recognize female Autism in girls sooner, faster, more adeptly and at a much younger age than say, oh I don’t know, 40.

Perhaps then, the facts that girls and women with Autism experience as many sensory and processing difficulties throughout their lives as boys and men with Autism do, can be openly acknowledged and understood by all.

Perhaps then, there wouldn’t be so many undiagnosed women trying to desperately figure out why they’ve always felt so awkward around other people and berating themselves for being so different.

Perhaps then, we’d also have seen more changes within the diagnostic process had the discussions surrounding female Autism focused less on our techniques of supposed evasion, and more on the inabilities of professional’s to accurately detect and diagnose female Autism in the first place.

No amount of double talk should detract us from the fact that improvements for women with Autism will only occur once the flaws in the area of diagnostic accuracy have been addressed.

Especially considering that we can’t technically diagnose ourselves, regardless of how thoroughly we research Autism or how deeply we ponder the prospect.

The only option left to us, it would seem, is to strive to change the parameters under which knowledge pertaining to Female Autism is currently being collected and constructed.

So it’s up to us to point academic researchers in the right direction when it comes to female Autism because apparently if we don’t, they’ll simply all keep listening to each-others bad ideas and encouraging each-other to see traits that aren’t really there whilst continuing to ignore those traits which really are.

This is a somewhat ironic state of affairs considering that we’re the ones who are supposed to lack the ability to see the bigger picture.

We’re also supposed to lack the capacity for self-awareness, yet all a researcher really needs to do these days, is type in the search terms ‘female + Autism + Blog’ and they’ll soon have all the evidence they need to confirm that we are indeed an extremely self-aware bunch.