Following on from our Spotlight on PDA, Caroline Greenwood shares a parent view of Pathological Demand Avoidance (PDA).
If you suspect PDA or you have had this diagnosis for your child, here is my (in 500 words!) point of view from a mother with a daughter who has been diagnosed with PDA.
Like all ASD diagnosed humans, there is a spectrum. Matilda, at the high end of this, goes to a mainstream school. This will change though as the demands of senior school life increase.
Signposts not labels
Firstly, and most importantly, as with all diagnoses, ASD, PDA etc are signposts, not labels. They do not define your child, they are here to help us and others. To arm humans who are ill-equipped for this life with the skills to live beyond basic survival.
Our children are not the problem, the ‘life formula’ that has evolved for generations is. So, our task as parents, is not only to equip them with the aforementioned skills but to chip away at society, until society listens.
Change the name
PDA is an awful name. Can we change it please?! Direct Demand Anxiety (DDA) would that not be a better more useful name?
This is exactly how we should view it. Our children are avoiding the demand because of the anxiety caused by direct questions. If we called it DDA, immediately it gives others a skill – not to ask direct questions.
Parenting a child with additional needs
Additional needs parenting is not for the faint-hearted, you will need impenetrable rhino skin. One of your biggest obstacles will be judgement: from society, from your family, from school. Get over this quickly; the concern of others does not help your child and is, therefore, superfluous.
You are no longer a traditional parent, you are not raising children to ‘fit’. You’re raising humans that need to believe everything they do, every decision they make is their choice.
Your child needs to feel in control
They avoid demand because of their mechanical need to be in ‘control’ or what they portray as control.
The ‘control’ that you were raised with, that other parents have over their children, will not work with our kids.
The hardest part is the relinquishment of that control. If we are to succeed as PDA parents, handing these reins over is terrifying.
Also, how much control is the right amount? It boils down to this. What we are offering them are choices, our parenting skill is about encouraging them to make the right ones.
That said the ‘non-negotiables’ are imperative. Decide early on what those are and stick to them. Their safety, safety of others, bedtime…decide on them and lose them at your peril. That rhino skin I was talking about? That.
Change the world with our gifts
I used to ‘mourn’ the daughter I will never have, but not anymore. Everyone is so concerned with fitting in and all the tsunami of issues that social media brings, and I realise that I have been given a gift. Because that is what they are.
We, the parents, have an opportunity to change the world with our gifts.
All I wish for Matilda and my two sons is peace; the ability to find equilibrium. We must make our focus to arm our children with the ability to live a life of contentment. Between us, we can change the life formula which one day, others will want the code for.
Caroline, also known as Caro, blogs over at Spikey Mama – check her out.