As some of you will know, I’ve been desperately seeking help for my daughters increasingly out of control behavior and, up until recently, finding little to no help at all.
One of the biggest problems that I’ve faced in my efforts to garner any form of professional assistance for her is the genuine lack of belief out there that a child of her age could act out so violently without cause.
Now when I say ‘without cause’, what I actually mean is that all (bar one health care professional), have 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 abusive and aggressive, then it must be because I, as her mother am also abusive and aggressive?
Well, I’m not abusive or aggressive. I’d much rather run from a fight than jump up and start one.
I’ve not failed to impart to her the correct and socially expected standards of acceptable behavior.
As I have said before in previous posts, my daughter knows right from wrong.
Yet when she gets in a rage, or a ‘meltdown’, all bets are off and she can and will do anything to express her anger.
So after having it suggested to me that she may have Asperger’s Syndrome, by the one and only health care professional who took me seriously, and that her ‘meltdowns’ may be occurring as a result of her increasing inability to cope with a world that she’s struggling to comprehend, I thought well, I already know those things about her.
And I undoubtedly agree that she probably does have AS, and I have already adapted many of the routines in our life to compensate for that,…. but,….. and here’s the big but,…… she can when she wants too, 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 is understand that other family members have rights and needs 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 may have AS but is she now so spoilt rotten because I’ve instinctively sought to compensate for that, that she’s suddenly forgotten how to misbehave whenever it suits her?
Have I been such a bad parent that I’ve taught her to abuse others whenever she can’t get her own way?
And does she even know any longer what her own way is because nothing and 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.
I’ve lost the ability to predict or fore see where the time bombs are in her life.
I can’t defuse that which I cannot see.
Therefore, I can not stop her rages from occurring.
Nor can I bring her out of them.
Nothing it seems brings 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.
This 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 way, then why won’t giving her what she wants calm her down?
To me these things just did add up.
And then I read this post from http://bipolar-truth.com/2012/08/15/pathological-demand-avoidance-pda/ on Pathological Demand Avoidance and the pennies began to drop, and drop and drop.
“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.”
After reading this my jaw dropped, for this is exactly what I am seeing in my daughters odd set of behaviors.
One minute she’s my lovely girl, and she’s calmly and rationally, though sadly accepting her father’s impending marriage, the next minute she’s plotting to destroy him or blowing up at me over the loss of a her hair tie (of which we have a jar full, all the same size and all the same color).
And then I read the next part of the post;
“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 and seem to have some but often significantly impaired theory of mind. 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 think I finally can.
And then I read from yet another blog at http://islingtonhomeschoolmom.wordpress.com/2012/04/10/understanding-pathological-demand-avoidance-by-christie/ 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.”
Then from yet another wonderful blog http://alexcparsons.wordpress.com/2011/12/20/article-from-the-times-on-pda-extracted-from-pay-wall/I found the following information.
“
“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.”
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.
Pathological Demand Avoidance.
And I am not alone.
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.
Related articles
- Pathological Demand Avoidance group bids for charity status (shiggs55.wordpress.com)
- Important Publications About The Research and Studies Conducted On PDA (shiggs55.wordpress.com)
- Out of Control (autisticson.wordpress.com)
- Living life on the spectrum (theage.com.au)
- Abnormal Is the New Normal (slate.com)
So glad you’re finding others who know what you are going through. This is where labels and a diagnosis really are helpful. Thinking of you and hoping you continue to find answers.
Thank you so much for your kind words Ariane. I feel like I’m finally starting to get somewhere and the posts by others on this subject with all of the labels applied have made is much easier for me to find the information that I need and have given me so much more hope than I had at the beginning of this journey.
I just came across your posting and comments and wanted to say how wonderful that there is finally information to help open a window into such a little known syndrome. As a nutritionist and one who leans more heavily towards the naturopathic side are you keeping a detail food diary and recording behavior swings within 2 hours of eating? You may begin to see a rough pattern of behavior within the 2 hour post eating magic window. Behavior changes associated with certain food and digestion schedules have been seen in some austistic children. I am not aware of food studies that involved children with PDA but it is worth looking into. Track what your daughter eats and record what type of food, how much food and what her behaviors are for 2 hours after she eats. You may be able to adjust her diet and this may help her not lose control.
I am a big ole fan of food diaries and post eating behavior tracking. You will be surprised at what foods can do to how we respond to stress and how we balance incoming information.
I wish you luck.
carole
Wow. It must feel soooo good to have found this information. So what’s the next step? Do you tell her?
Next step is to wait and see what the mental health assessment team come up with on their own. I don’t know about you but I have found that professionals get quite irked by parents who suggest possible outcomes for their children before the professionals have had a chance to make them. I’ll tell her if and when the diagnosis is confirmed and I will make sure it’s in the presence of a counselor that she knows and trusts. In the mean time I’ll just start applying the strategies for dealing with PDA that have been suggested by other bloggers and see if it helps. Thank you so much for taking the time to comment Hiddinsight.
No problem. I have to admit I look at my daughter every once in a while and try to figure out what’s motivating her, and I am stumped. It was easy for me to empathize with what you are going through, although, of course, I have absolutely no idea. Keep working at it. It will be worth it. You are a wonderful mother.
Thank you so much Hiddinsight.
I’m new to your blog but in reading this post my heart broke for you over and over…you are not to blame for the things your daughter is trying to cope with and I’m sure you’re not a bad mother, considering the love I can feel all over this post. My son is autistic and I know how easy it can be to blame yourself … but I hope you don’t, deep down.
Looking forward to getting to know you and your family better through your blog.
Thank you so much for your kind and supportive words Grainne. They mean so much coming from another mother who is also loving her way through Autism’s maze of experiences. Blessings to you.
I recognize WELL the frustration you have with your daughter, as it sounds like a snippet of my youth if seen from a time capsule. I have AS and I “appeared” bipolar before Asperger’s was recognized. My parents’ friends made them feel ostracized for the behaviors they perceived I “got away” with and looked upon them as if my actions were their fault. Most of what I read here is classically Asperger’s, in that she appears to go from one extreme of conduct to another IN RESPONSE to an assaulting environment. With little or no theory of mind, someone with AS isn’t always aware what sounds, lights, vibrations, etc. place them in distress, nor how to remove themselves from it, if even possible. Then, comes the meltdown! It may “look” like we want to control everything, but what we’re seeking to control are our own inner processes by changing the environment anyway we know how, even if that becomes socially inappropriate.
I’m not much for adding more labels to the lexicon of co-morbid conditions to the upcoming DSM-V, which are mostly manifestations of Asperger not yet understood. As each Aspie is unique, there is not enough known yet about the complete expression of all that is Asperger, ESPECIALLY within girls, as boys have the condition so much more often and aggression is expected of them.
May I suggest ruling out any chemical causes in her body that may be going awry or may be lacking? Have you had her waking Cortisol or B12 levels checked? There is also a difference in Aspergers in the methylation pathway of key amino acids. Plus, if she tends to high or marginal blood pressure, she may be suffering a kind of permanent stage fright, for which a beta blocker drug can be a life-changer/saver. If the brain can’t work optimally, it would explain for why she is fine and social one moment, knowing conduct, and while at other times, it may be difficult for her to think her way out of the proverbial paper bag, so to speak. I used to be that way. One minute I could be chipper and brilliant and another, it felt as if I were trying to think and walk through honey, getting “stuck” on ideas (possibly compulsions). Until the above issues were resolved for me, I was unbearable to be around.
I hope any of this helps. Contact me if you’d like to hear more. I admin an Aspie adult support group (open to parents, too) on Facebook that “may” be useful to you.
BE well,
ZL
Thank you so much for your response and the amazing amount of information you have given me Erron. Your comments make so much sense to me. Thank you. Thank you. Thank you.
I am truly touched by your appreciation. I live to help others like me, especially when I see a parent in as much distress as mine were. Ever since I learned of my AS late in life, I feel driven to help others still captive in their blind spots along with their parents. (I think of mind-blindness like going through life as a racehorse with blinders on, in that only if one turns and looks back at the wake left behind, can one tell the effects one has had on others and events in one’s life. IOW, we have difficulty knowing emotions “in” the moment it’s happening.) This is how I learned EVERYTHING. Make a mistake, see the aftermath, then try not to repeat it the same way. Start again.
That was barely any info on Asperger’s Syndrome, as it is a complex neurological difference in wiring with new knowledge growing daily, making many meds ineffective or dangerous to us. Mostly, it is NOT a disability. It is another way of encoding information. Whereas, words and social cues are the norm for neurotypical people, Aspergers go by what they see, hear, smell, touch and sense. We can make good lie detectors, too, in that we’ve had to study body language to fill in what is lost in ordinary communication and often learn to detect “tells”. On the flipside, we can also be unusually trusting/trustworthy and gullible in situations like recess playgrounds (the bane of my early life until I learned human nature better).
I believe I heard of your plea from a FB friend in the Aspie forum and once reading it, I couldn’t help but respond. There’s so much more to know which could make both your lives easier and I welcome ANY questions you want to pose to me or my forum in the future.
I’m glad I could open a window for you!
BE well,
ZL
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