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.

 

 

“The Extreme Male Brain?” Questioning The Gendering of Autism.

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“In 2005, autism researcher Simon Baron-Cohen opened a New York Times article with the following statement: “By studying the differences between male and female brains, we can generate significant insights into the mystery of autism” (Baron-Cohen). What makes this statement possible, rhetorically, is a process of gendering that has made autism spectrum disorder (ASD) into “The Male Condition”—the title of Baron-Cohen’s piece.”

“Autism is an example of what Judy Segal calls a rhetorical disorder: in the absence of clear biological markers for autism, “discourse fills the space that certainty in medicine leaves unoccupied.”

“in 2010 the APA released working notes for the DSM-V, which offered new criteria for autism and placed Asperger’s syndrome (heretofore a separate disorder) within the umbrella category of ASD. Such a shift would be fundamentally rhetorical, in that it is enacted through language, persuading practitioners to categorize individuals in a new way.”

“Autism is shaped in part by “social meanings, symbols, and stigmas” attached to it. What makes this process unique, in the case of autism, is that these social meanings do not merely demarcate the “normal” (or neurotypical) from the “abnormal” (or neurodiverse); instead, they also differentiate between men and women, in such a manner that the “male condition” is pathologized alongside the autistic condition.

“ In the case of the EMB theory, this commonality stems from the fact that more boys than girls receive autism diagnoses, by a ratio of 4 to 1. These statistical facts, though, are extended to the disorder itself, where maleness is applied to the brains of individuals with autism. In the process, researchers espousing this theory construct a scale, drawing on the rhetorical figure of incrementum, or scale, which positions women, men, and people with autism along a continuum according to the degree to which they possess some quantified trait.”

“An incrementum is simply a scale, but one that can be used for rhetorical purposes. For instance, if we claim that men tend to be heavier than women, who tend to be heavier than children, we have constructed an incrementum, ordering those three groups according to weight. This claim might seem noncontroversial, but imagine constructing a scale in which we measure intelligence, instead, and order individuals according to sex. That type of scale can support a range of unsavory arguments for policies of all sorts, and would be fundamentally rhetorical both in its construction and its use.”

“Sex and gender offer readily available lenses for understanding autism because they are “present” and by referencing culturally specific notions of sex and gender, researchers make those elements hyper present, and, in the process, obscure others.”

“Late twentieth-century rhetorics of technology, gender, and the service economy make it possible to order individuals along new scales, including technological ability and emotional intelligence.”

“ These scales have shaped scientific understandings of autism in ways that direct the attention of researchers to some aspects and deflect attention away from other important issues, including alternative scientific theories, the interests of girls and women with autism, and the issues deemed most important by autistic people themselves.”

This article consists of excerpts from an academic paper written by J. Jack and published in 2011.

 

Asperger’s Syndrome / Autism and Pathological Demand Avoidance (PDA)….Is it a comfortable fit?

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Seeking the opinions and advice of others regarding Pathological Demand Avoidance as it relates to Asperger’s Syndrome has shown me that there is a world of debate out there regarding the  relevance of seeking to apply yet another label to the behaviors of those already defined as being on the Autism Spectrum.

Yet despite this, many now believe that Pathological Demand Avoidance (PDA) is a valid diagnosis that is consistent with an Autism diagnosis.

As the mother of a child who has undergone many of the behaviors described within PDA I’m going to admit that my key point of focus here lays in finding any tools that better enable me to best understand the differences that arise between my own experience of Asperger’s Syndrome and my child’s experiences of it.

But…..having said this, I will only accept those explanations that best explain our differences, if they can accurately explain why my daughter’s behavioral needs are so different to my own.

After all we have both been diagnosed with the Asperger’s Syndrome, yet despite this, our behaviors are as different as chalk and cheese.

For example, I’m an extremely peace-loving person.

I am both opinionated and yet at the same time, a quiet person.

I like rules.

I like knowing where the boundaries of any given subject are.

I’m not an aggressive, nor an explosive person.

When I feel overwhelmed, I tend to withdraw into myself.

My child on the other hand can become both explosive and aggressive when she feels overwhelmed.

And the things that make her feel overwhelmed are more often than not, simply being asked to do something.

Now we both feel the need to question everything, but only one of us feels the need to rage aggressively against being asked to do things.

So why is this so?

In my experience, the use of PDA to better define the way in which some of us experience Asperger’s syndrome, and yet others do not,  is both a worthwhile and a valid one.

I acknowledge that I am viewing the whole idea of PDA form many levels.

Not only am I a person with Asperger’s Syndrome myself, but I’m also the mother of a child who also has Asperger’s yet who’s behaviors are at times so completely different from my own that they make me wonder whether or not one of us has been incorrectly diagnosed.

So for me, the idea that PDA may be an additional experience that some with Asperger’s Syndrome experience, makes sense to me because it helps me to understand and acknowledge how two females, both diagnosed with the same form of Autism, can respond to the demands of life so differently.

In our situation, my daughter’s diagnosis of AS alone, still does not provide me with enough of an explanation as to why my child behaves so aggressively at times.

Yes children with AS get overloaded with social stimuli, yes they have meltdowns,  yes they can  be aggressive, yes they like to be in environments that they are both familiar and comfortable with, but on the whole, do they willfully  seek to confront or act physically abusively  toward people, when asked to do something?

At the moment having a diagnosis of AS alongside a diagnosis of PDA provides me with a far clearer picture of what it is that  my child may be experiencing.

As a mother my goal is to try my best to understand and help my daughter.

I’m not trying to right the wrongs of the world in one foul swoop.

Nor argue semantics over whether or not PDA, as  a conceptual diagnosis on the whole, is either correct or valid for every individual with AS, as I suspect indeed, it is not.

And I have found that there are many parents out there who find the explanations that PDA offers a valuable way of helping and understanding their children.

So is PDA, as an explanation for aggressive behavior in children with AS a worthwhile path to go down?

Yes, I think it is, because what I do know is this;

It is better, although be it harder, to be a mother who is trying to help and understand her child, than to be a mother who is not.

It is better to be a mother who seeks information and accurate explanations that better fit her child’s experiences,  rather than being a mother who blindly follows whatever the current bells and whistles and ideas of the day, may be.

Especially when, as an adult with Asperger’s Syndrome, I know that there are too many stark differences to be found between my own and my daughter’s reactions to the world around us, to ever be adequately explained away via the use of just one diagnosis or one singular way of understanding Autism.

So I don’t think I’m wrong to question the value of finding additional diagnostic tools or ways of understanding Asperger’s Syndrome that may help to explain these differences.

Nor do I think that it’s wrong to logically seek to weigh up the pro’s and con’s behind an explanation that seems to fit, yet others find irksome.

I don’t think it’s wrong to ask those who have the privilege of knowing the PDA debate from the inside out, how they feel and what they think about it.

I think it would be wrong of me to do anything  otherwise.

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

Art work by Carne Griffit

Art work by Carne Griffit

 

I spent years desperately seeking help for my daughter’s increasingly out of control behavior and, up until recently, found little to no help at all.

One of the biggest problems I’d faced in my efforts to garner any form of professional assistance for her is the genuine lack of belief that a child of her age could act out so violently or manipulatively without cause.

Now when I say ‘without cause’, what I actually mean is that all (bar one health care professional), sought to turn the ‘blame’ for my daughters behavior back on to me as a parent.

Clearly I must have been doing something wrong, like not standing up to her firmly enough, not providing enough discipline or maybe as a parent even failing to impart to her the correct and expected standards of behavior.

Perhaps, if my daughter’s behavior is at times manipulative, abusive and aggressive, then it must be because I, as her mother am also manipulative, abusive and aggressive?

Or so the story goes.

Well,  just for the record, I’m neither abusive or aggressive and probably couldn’t manipulate my way out of a paper bag if my life depended on it.

I’m the kind of person who’d much rather run from a fight than jump up and start one.

As a matter of fact, I’m an extremely quiet person and I love peace and harmony.

I’m also big on following rules, have a strong sense of social justice and adore having a daily routine in place.

For me, having a routine, affords me great peace of mind and comfort.

However with my daughter there is no such sense of routine possible.

She does not always enjoy the same thing today as she found comfort in yesterday.

She flies in a rage whenever she is asked to do anything, even if it’s something as simple as putting her clothes away.

Whenever this happens all bets are off and she can and will do anything to both express her anger and to avoid doing whatever it is that she has been asked to do.

Now I know that she has Asperger’s Syndrome,  but so do I, and we are not the same when it comes to engaging in the basics of life.

Despite this, many involved in the assessment of Asperger’s insist that her ‘meltdowns’ are occurring as the result of her increasing inability to cope with a world that she’s struggling to comprehend.

From my point of view such explanations form a yes but…. no response.

I undoubtedly agree that she has AS, and that she finds the world overwhelming but I had already adapted many of the routines in our life to compensate for that,…. but,….. and here’s the big but,…… she can cope very well with social situations and she can, when she wants too, be very agreeable, happy and easy to get along with.

What she can’t seem to do, or is unwilling to do, is understand and accept that other family members have rights and needs that need to be addressed too.

Especially if those rights and needs conflict with anything that she wants to do.

So I’ve been left asking myself just what is going on here?

Yes she has AS but is she now so spoiled rotten because I’ve instinctively sought to compensate for that, that she’s suddenly forgotten how to appropriately behave whenever it suits her?

Have I been such a bad parent that by pandering to her needs, I’ve inadvertently created in her the expectation that she should always get her own way?

And does she even know any longer what her own way is because nothing and I mean nothing, calms her down once she’s exploded.

Her behavior has reached the point where the slightest things set her off and there’s absolutely no rhyme or reason to it at all.

Therefore, I can not stop her rages from occurring.

Nor can I bring her out of them.

Nothing it seems can bring her out of her rage until she herself is ready to come out of it.

Any attempts to help her calm down once she’s in a rage are rejected and usually result in an escalation of her bad behavior.

I have quite literally being pulling my hair out trying to understand why she blows up at the drop of a hat and why once she’s up in the air, nothing can bring her back down.

Not even letting her have her own way with whatever it was that set her off in the first place will work.

So it’s not simply a matter of “I’ll misbehave until I get what I want” because she no longer even seems to want whatever it was that set her off in the first place.

There is simply no logic to it all and I doubt very firmly that she is either in control of, nor understands, why she’s doing what she’s doing.

I must even admit that there have been times when her behavior has both scared and confused me.

Scared me, because when she goes off she becomes incredibly violent.

Confused me, because if it were just a matter of her wanting to always get her own way, then why won’t giving her what she wants calm her down?

None of these things made any sense to me at all until I read this post article-from-the-times-on-pda-extracted-from-pay-wall/,

“Children with PDA essentially have an in-built need to be in control and to avoid other people’s demands and expectations, which raises their anxiety levels to an extreme extent…. They all shared an unusual resistance to everyday demands – even when related to things that they would enjoy. The children were superficially sociable but were often manipulative and lacked awareness of unwritten social rules. Their moods could switch very suddenly and they often confused reality and fantasy.”

After reading this my jaw dropped, for this is exactly what I’d been seeing in my daughter’s odd set of  behaviors.

One minute she’s my lovely girl,  and she’s calm and rational, the next minute she’s  blowing up at me over the loss of a hair tie (of which we have a jar full, all the same size and all the same color).

Next I read another blog post called pathological-demand-avoidance-pda/   on Pathological Demand Avoidance  which stated:

“These children are said to resist the ordinary demands of life to a pathological degree using an abundance of tactics. They often have a Jekyll and Hyde type of personality with severe mood swings and can often exhibit severe behavioural difficulties. They may have a troubled educational history and the family may be in severe need of help and support.”

And the pennies began to drop, and drop and drop.

The blog post I’d been reading then went on to say:

“In contrast to most individuals with autism spectrum disorders, individuals with PDA appear to have an anxiety-led need to control, possessing superficial social skills…. They often engage in manipulative, domineering behaviour.”

Can you hear the sound of still more pennies dropping because for the first time, in a very long time, I finally could.

And then I read  a post from yet another blog understanding-pathological-demand-avoidance-by-christie/ which stated that:

“PDA is related to the autistic spectrum disorders (ASD), but varies significantly from most other syndromes on the spectrum. Unlike other ASD children those with PDA appear to understand emotions and communication…to the point of being manipulative.”

This was followed by the additional understanding that:

“These children do not recognize that they are children. And while they may fully understand the societal rules of behavior, they have difficulty applying those standards to themselves. Their deep need to control situations and their environment is born out of the intense anxiety that they experience when demands are placed upon them…even normal every day demands of life and school.”

Got it in one.

Still more pennies  were dropping and then I read this, written by a mother about her young daughter:

“She was totally dictating our lives – what I wore, if I could make a phone call, who could come round.”

For me this was the clincher, the thing that’s making me believe that PDA could be the answer, because these are the behaviors that my daughter regularly attempts to apply to me.

She’s even gone as far as taking away my phone and my hiding my car keys so that I can’t leave the house or  call for help.

I know that to most people it sounds absurd that a child can create so much turmoil, especially a girl, especially a girl under the age of 13, but I’m telling you they can and I know now that I’m not the only parent experiencing this.

There is a term for it.

It’s called Pathological Demand Avoidance.

And it’s real and I am not alone in being subjected to it.

So thank you to each and every blogger out there whose posted on this topic and a special thank you in recognition and gratitude to those amazing bloggers whose words I’ve quoted.

You have all given me a much-needed source of information, hope and inspiration.

I can only hope that in turn, by passing on your information, that this post may one day do the same for someone else.