My daughter has a very rare and misunderstood disability that has turned our lives upside down, and put a complete stop to normal day-to-day living.
Nobody can tell that she has a disability because she looks and can, at times, behave normally to the untrained eye or the casual observer.
by Jane of understandingpda.com
My daughter has a neurological disorder that affects the way she sees and interprets the world in which she lives. Just because you can’t see it — like you could a broken leg — doesn’t mean that it doesn’t exist.
Her brain has developed differently than mine, and so the parts of my brain that are responsible for socializing, empathy and communicating appear to be wired completely differently in her brain.
People are so confusing, scary and unpredictable for her. Because she has a phobia of people, as I see it, she will try to keep herself calm and her anxieties low by making sure that she is in control at all times of other people by either avoiding the demands or requests made by others or by being bossy and controlling.
When these tactics fail, and her anxieties increase, she will lash out in panic as she sees her control slipping away from her. As she has grown older, she now uses a new tool to avoid her phobia of people and that method is self-imposed isolation from the world and the people in it.
My daughter is not naughty! And traditional parenting and behavioral strategies will not miraculously cure her any more than offering a bag of sweets to a paraplegic would encourage them to miraculously stand up and run around a race track, or confiscating a treasured item from a dyslexic would make them spontaneously read and write with ease and without error.
The casual observer will often witness my child swearing, screaming, shouting, kicking, running off and hiding, and he will shake his head and mutter disapproval about ineffective parenting and the lack of discipline in today’s world. But if she looked disabled, then both she and I would receive an empathetic look from the casual observer instead of the disapproving, judgmental looks that both she and I have received time and time again over the years.
My daughter’s brain tells her that she must be in control at all times to make the world and the people in it less scary. Being in control of everything and everyone in her life keeps the anxiety and fear at bay.
When she isn’t in control, she cannot cope and the anxiety rises and explodes in the form of a meltdown. Being in control makes life more predictable, she will know what is coming next, there will be no unpleasant surprises and she doesn’t have to worry about making any social faux pas if she is directing all interaction.
She has told me that avoiding demands and the expectations of society is an instinctive quality in her, and that it often comes naturally without her consciously thinking about avoiding the demands that people place on her.
Trying to make her compliant and submissive because of someone else’s expectations can’t be achieved any more than asking her to change her hair color can. This is her neurological make-up, her hardwiring, her system — and so she can’t just magically change who she intrinsically is because we tell her to do so.
My daughter has a rare form of autism called Pathological Demand Avoidance Syndrome.
- She has an anxiety driven need to be in control at all times of herself and those around her. Failure to feel in control can result in a meltdown, which is best seen as a panic attack.
- It means that she will avoid complying with any requests made by others. Not big or difficult requests just simple ones like getting dressed, having a bath, leaving the house or even doing an activity that she loves if it has been somebody else’s suggestion.
- Her controlling nature and need to be in charge means that she cannot maintain any friendships for long because other children cannot cope with her controlling, explosive and unpredictable personality.
- She can become obsessed with a particular friend, and she will shower her with love in one instant, and then kick her in the next instant if she does not feel in control.
- We have experienced multiple school suspensions due to explosive and violent behavior when she does not feel in control.
- When she cannot cope with the pressures of the outside world and the anxiety of not being in control, she retreats to the safe haven of home. This has led to multiple and long periods of complete school refusal, and also refusal to leave the home.
- In 2013, we withdrew her from formal education and we know home educate her following a philosophy of “Radical Unschooling.”
- She is not being naughty or willful. This is her way of protecting herself from the anxieties of outside life that are beyond her control. She doesn’t want the humiliation of having panic attacks/meltdowns in public, so she refuses to go out.
- Her behavior is very unpredictable and we live our lives walking on eggshells. She can go from happy and cuddling in one second to abusive and punching in the next second.
- It can take hours to get the most simple of tasks completed. Something as simple as brushing her teeth has, at times, taken us days to achieve whilst been sworn at and dodging flying missiles in the process.
- She is very hyperactive, sleeps very little and for most of her nine years has required constant one on one attention.
- Living with a child with PDA is physically and mentally exhausting. You have to learn to have levels of patience that you didn’t know existed, let the mental trauma of being physically and verbally abused on a daily basis by your own child wash over you and learn the true meaning of unconditional love.
- Just over a year following removing her from school and following a philosophy of Radical Unschooling, and we have a much happier child and calmer life. The positive results have been tremendous.
Early studies on children that were identified with PDA that have now reached adulthood were found to be mainly living in residential units. We hope that with early intervention and understanding that this will not be the case for this generation of children identified with PDA.
My daughter has sobbed and sobbed following a meltdown and it broke my heart when she asked me if I could get her a new brain because she didn’t want to have PDA or to spend the rest of her life with it. The one thing that she can’t control in her life is her PDA because it controls her.
Both she and I would give anything to have this debilitating condition taken away, but we can’t. All we can do is to help each other to understand it, and for my husband and I to hopefully give her the tools to try to gain some control over it.
Over a year after originally writing this, Mollie is now learning to live with her PDA, and with self-awareness, a specific environment tailored to her needs, and lots of love and understanding, she has far more control over her behavior and her outbursts.
We are now beginning to be able to positively harness the positive aspects of PDA and to suppress the less-desirable aspects. She is trying her very best — as are we.
Life is hard, and there are no easy answers, but together we are winning the battle, and seeing positive changes in her quality of life.
We no longer wish that we could take her PDA away — we just wish that the world could be more understanding and tolerating of those whose brains function differently, and make the necessary allowance for them.