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.