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.