On PDA (Pathological Demand Avoidance syndrome) and temporary incapacity and the opportunity to heal
By Kristy Forbes
Autism & Neurodiversity Support Specialist
Many families I engage with around how to work with their demand avoidant children ask me why their children have become so super, super incapable of self care when they’re finally out of the environment that caused them such anxiety and trauma (often school).
And there is a really good reason.
When people are living through something that is extremely challenging for them, they are in survival mode. Sometimes to the point where we don’t even recognise stress, or anxiety at all.
In fact, in many demand avoidant autistics, our anxiety may even come across as cockiness, confidence or ‘harassing or annoying’ behaviour.
Many of us show up, do what we’re meant to do and fawn and mask our way through not even being able to identify how challenging things really are until we’ve had a break (weekend or school holidays or time off work) and then have to return.
Our hypersensitive neuroception, however will kick our resistance into action whether we like it or not.
And herein lies the greatest challenge for us.
Others having the understanding or the belief that we choose to ‘not do’ the things they ask of us.
Because here’s our reality: we can’t even do the things we want to do for ourselves.
Many demand avoidant children, once freed from the demands that come with the school environment, require recovery time.
And this will be messy.
It is a time of upheaval for many families, because it’s when we, the PDAers, stop.
It’s when we stop and rest and the trauma catches up with us.
And herein lies the next challenge; society’s varying understandings and beliefs around what ‘trauma’ itself looks like.
In the case of the PDAer, trauma arises when we are forced or demanded to fit into any system, box, ideal or philosophy that isn’t right for us.
Do we think we’re too good, better than others, deserve better?
It’s actually extremely painful and difficult to be in this very situation, particularly as a child whose family, educators, professionals misunderstand us and believe that we are stubborn, insubordinate, uncooperative.
This in fact, adds to our trauma.
With there being such a gross lack of awareness, understanding and acceptance of PDA at all, the responsibility is left with us, the PDAer, to further internalise our disability alone.
To sit with it, analyse it, understand it.
And many of us just cannot.
We are children.
The average, ‘typical’ child is unable to grasp their own level of self awareness until they’re at least six years old.
And autistic children (of which demand avoidant children are), often take longer to develop our emotional maturity.
It can be a lonely life as children.
And so, when we are finally freed from that environment full of demands, we begin our processing.
And this may be where challenging behaviours begin.
Rage, meltdowns, self harm, running away, violence for some of us.
And, extreme demand avoidance.
Little ability to care for ourselves.
No showering, no brushing teeth, no eating in healthy ways, no following instructions.
Living in our rooms, on our technology, seeking solace, seeking comfort.
For many of us, our trust is compromised, even in those who are seeking to change, to understand us, to love us, to protect us.
We are living through the experience of our parents working through their own trauma, fears, insecurities, rejection, panic.
Often, there is little stability around us because our PDA has not been well received by anybody, often ourselves included.
Our brains step in, and say enough is enough.
It recognises that we have, in the past, done as we’ve been asked and it has resulted in trauma.
And so it says “No more”.
No more anything.
No more basic living skills.
Many families will report that whilst they have always altered their language around requests, they’ve not known their child to be aggressive or completely non compliant.
It’s important to know this: aggression and challenging behaviour are NOT characteristic of autism or demand avoidance.
They are indicators of autistic and demand avoidant children being in an environment that is not right for them, or of trauma as the result of prolonged anxiety.
Families may even begin to notice that their child will also not engage in the things that make them happy and bring them joy.
This is the brain functioning at full capacity to protect your child.
The truth is, feeling the trauma is the opportunity for the family’s introduction to recovery.
It is an opportunity to relearn. To undo. To seek help where necessary.
There will be a period of messiness before any recovery, in any situation that involves trauma.
But this is the point where families panic the most.
It’s not only okay, but it’s extremely important at this point to allow yourselves space, time and freedom to recover.
Nothing is as important as this.
It must be a priority.
Unschool, forget learning for a while.
Forget appointments unless they’re an emergency.
Accept that your demand avoidant child may ONLY connect with their social network via gaming, iPads, text or any other technological means.
This is okay.
This is a period of recovery.
This will be a gruelling and difficult time where families can often be pushed to the absolute brink.
Marriages may be tested, extended family may not approve, friends may drop it.
It is important for us to not force.
No forcing connections, relationships, schedules, routines.
Time will provide healing and recovery.
Be aware of finding a specialist or therapist who is trauma informed and listens to you.
Create space for each of you and allow the process of recovery to unfold.
Recovery begs space.
No blame. We cannot know what we know until we know it.
And please know, you do not have to do this alone.
©2019 Kristy Forbes. All rights reserved.