Awareness is not a cure for disability: PDA

I woke up this morning with ‘that’ feeling. The one where I’m already anxious before my eyes open and my brain boots up.

My feet are rubbing together furiously and I’m rocking on my side, my organic autistic movement for regulation. My body is wise and knows what to do.

The first thing I do is attempt to deconstruct it, another natural organic autistic tendency-to dive right in and analyse and process.

“Why am I anxious?” I think to myself. There are no immediate demands of me, of my time, other than Motherhood and being human.

As I lay there, I begin to dream about all the amazing things I want to do today that send excitement through my body..gardening, writing, going for a walk, organising, playing with my children. Enjoying some time off.

I feel the anxiety increasing, and my instinct to hide under the covers kicks in. The anxiety hurts my tummy, I can feel my shoulders and arms are tense.

I reach for my glasses and phone to engage in some early morning scrolling; which often grounds me instantly. Yep, you read that right. Screens bring me back to the moment and focused on what’s in front of me.

But, I make the mistake of visiting my Pinterest account, filled with aesthetically pleasing carefully planned folders of colours, furniture and exterior and interior design. Excitement again! Ohhh the gardens! I smile, and wonder how the newest additions to my garden are going.
Yesterday, my ten year old daughter and I spent a little time at our local hardware store immersed in the sensory delight of plant life in the nursery section. She’s non speaking, has extreme anxiety and significant support needs so a part of our family plan is to engage in leisurely, stimmy, relaxed outings together every week for the next twelve weeks before revisiting the plan.

I digress.

The more I think about all the wonderful things I can do, the more intense my anxiety becomes. I start to become nauseous. And then I realise..

This is demand avoidance. Hello there, PDA.

My PDA neurobiology is perceiving my excitement as danger, as a threat. This happens.

Many families will be confused as to why, after significant time having implemented a low demand to no demand environment, their loved ones are still demand avoidant.

The truth is, we will always be demand avoidant. This is our neurobiology, PDA. Pathological demand avoidance; Persistent, pervasive drive for autonomy.

My inherent nature demands of ME things that I cannot refuse, otherwise I suffer. I shut down, I experience extreme anxiety, I become chronically ill and fatigued and have no understanding of why.

My own joy, my own hobbies are also demands.

My brain misunderstands any type of arousal as a threat and my happiness, thrill, excitement in engaging with my passions is often very quickly shut down due to my neurobiology assessing that joy as a serious risk to my safety.

As a forty two year old woman, my response to demand avoidance now is to get my body moving, to sing, to stim, to jump around, and to let go of any ideas about how my day might go.

PDA demands that I live in flow with it; that I live in the moment when it presents itself as THE MOMENT where I am ABLE to engage, immerse, play, do the thing I haven’t been able to do.

As children, we don’t know this. We live with a raging war within; and the inability to communicate the whys. Why we can’t do the thing, why even after punishment and discipline, after rewards or the threat of losing things important to us, we can’t.

We can’t.

Even when we say we won’t. “NO!”, “Never!”..

It’s not won’t. It’s can’t.

As an adult, I have the privilege of setting boundaries, of communicating my processes and my needs. I have the liberty of saying No without being punished by those who are to love me; to keep me safe.

Children can not. They can’t say No without serious repercussions, consequences that include being rejected, abandoned, placed into care, judgements passed by extended family, names and labels assigned to them.

Imagine your disability being based around the word No. Not being able to do, to function, as a child.

Knowledge, awareness is a powerful thing. But acceptance is key.

As much as knowledge and awareness is wonderful and empowering, it isn’t a cure for disability.

It allows us to put supports in place for ourselves and for our loved ones in order to help them to live in collaboration with that highly sensitive neuroception.

But acceptance means letting go of everything we think we know, in order to be open to a new experience. And this is the real work.

The letting go, the going within, the sitting with discomfort, the challenging our preexisting conditioning.

The being prepared to lose people, but to gain others in their space.

It’s being prepared to potentially experience the stages of grief, related to the world we believe we’ve been a part of all this time having disappointed us in response to our children. It’s about living differently. And ultimately, it’s about finding peace.

PDA is so much more than not doing what we’re told.

What have you learnt about PDA that you hadn’t realised before?

-KF