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The image attached is from the view of Kristy. She has her legs up on the couch and is wearing blue jeans and white sneakers. Her legs are crossed. In the background you can see another couch and the rest of the living area of her house.

I have not yet rebuilt.

autism autistic health pathological demand avoidance pda radical acceptance Sep 22, 2023

Hello, I’m here writing. It isn’t easy, and it isn’t complete.

Be patient with me, please, as I figure out a way to communicate this internalised experience, these thousands of thoughts, these physical movements that come along with those things and the way in which I "say" it all.

I am a parent of four autistic children. They are all completely different. And yet, not so different in their residual experiences of being overlooked, forgotten, misunderstood, misjudged, by a society that just doesn't get it.

In our best trying, sometimes we just don't get it.

If it's not our experience, or that of someone we love, we oft overlook the multitude of human experiences that don't touch us.

I don't know all I could about cerebral palsy, or paraplegia as examples because I haven't had to.

In March, I started experiencing pain so incredibly debilitating that it forced me to withdraw from life as I've known it. I had to stop a lot of things, and there has been grief, and pain, and loss, and anger, and frustration.

I've struggled to find my way back, after being ripped by absolute force away from my work, my daily routine, my ability and capacity to be independent and to do all the things I want to do.

In that process, I've been reconnected with life.

My own personal life.

Reconnected with Country, stillness, the utter chaos of raising my incredible children and the really-hard-to-convey-unless-you're-autistic risk and hypervigilance of having to ask for help and then receive it.

And I have learned.

Far out have I learned some stuff.

I have learned how disabled I truly am and have been hiding all of my life, including from myself.

Yes, this is possible.

But it's more than masking.

It's an insidious lifelong learning that begins at birth and instills a level of self loathing with the inability or the struggle to not be able to do things, or the struggle involved with learning things.

Internalised ableism.

The end result is often to pretend, to say, to believe I CAN do all the things, and I truly become entrenched in those lies too.

The nature of this beast is that the rest of society sees us as attention seeking, lazy, stubborn, wilful, headstrong, rude, blunt and even as I've been described 'brutal'.

Brutal honesty. Brutally honest.

When I first became unwell earlier this year with chronic illness and a chronic pain condition, I resisted. Of course.

I resisted rest. I resisted help. I resisted acceptance. I resisted the pain. I resisted support for it.

I tore down my back fence, shoveled out bags and bags of soil, started pulling out shelves, gutted my bathroom, moved rocks.

Yes, I was in agony. On the floor each night, sobbing, crying out in pain. Grunting and breathing through.

I kept tearing down fences in my yard, opening up the spaces, removing furniture..

As a result, I became more unwell. I broke my wrist, and I broke my arm as a result of all the things I was doing.

And, I kept going. For a while, I didn’t know it was broken.

And when I found out, I wore the cast for a day.

I resisted the sling, I resisted the cast.

I kept going and going and going until I couldn't.

This is a result of a number of things.

  1. Internalised ableism.

Carrying on the work of others who have not, and do not understand. Seeing myself through the eyes of others. “You’re fine”, “You can do this”, “Keep trying”..

  1. Fear of services

Growing up, we didn’t tell anyone anything. Fear of human services. Fear of police. We lived poor for a while. My parent was a product of intergenerational trauma and was mostly without parenting and living skills. We had the police at our home fairly regularly for a number of years, all hours. That experience does not leave. Ever. I learned to just get on with doing life as the real people do, or to pretend I was, in order to avoid being targeted. I've been locked in cells, put in the back of police vans and in and out of juvenile court as a youngster never leaves.

  1. Trauma often begins to show itself when the mind and body has the space, time and capacity for rest.

No more survival mode? Ability to rest and not do so much all of the time? Meet your trauma.

Yes, I know you may have been working on it all your life, creating change in your family and breaking those generational cycles, but here’s the stuff..the real stuff that has been hidden underneath it all. Look at it now, or immerse yourself in screens, find some way to be super busy, or sleep to avoid it.

  1. PDA

Pathological Demand Avoidance. Right now, in this moment, I don’t even want to write about PDA because it continues to be so incredibly bandied about and misunderstood. It’s deep. It’s complex. It's an entire neurobiology and it's more than just demand avoidance.

  1. Anger, grief and loss and somatic release

I am learning so much about the importance of somatic release, regulation of my nervous system and building stress tolerance for myself. I have realised that in so many areas of my life growing up, I was so wise and intuitive at such a young age in finding ways to build stress tolerance so that I was able to at least have the capacity to ‘pretend’ I could manage life in neuronormative ways. My body takes on my emotions before I process them cognitively. Hence chronic illness.

  1. Dyspraxia/Apraxia

I have realised my body is dyspraxic, in ways I hadn’t known prior to this pain experience. I have realised the relationship I have and have not had with my body has been largely as a result of this.

At this point in my writing, I am running out of steam. Writing is hard. Cognitive processing is hard. My brain starts to forget.

I don’t like ending my writing before it’s finished and all my thoughts are out, but this is another aspect of life for me now.

Running out of steam. And having to honour that.

The autistic internalised experience is still so overlooked. We, including myself, have and continue to often focus on things that remind others of what they’re doing ‘wrong’ rather than providing alternatives or telling stories about other ways.

This isn’t a criticism. It’s an observation. And it’s fair that we often do this, because when we do attempt to educate, we’re often criticised or our experience challenged and refuted by non autistics which can lead to being more traumatised.

Something interesting to me is that in all of my tearing down physical barriers and boundaries in my yard, gutting the bathroom and the laundry, it was all about tearing down old structures. All the while, people were entering my life to support, connect and help.

I have not yet rebuilt. The symbolism is real.

I don’t do anything by half measures and so I am continuing to allow space and time for the tearing down and letting go of the internalised and often externalised pressure to rebuild. To have my yard looking nice, to decide on tiles and paint, etc.

Nope. I’m leaving it be for now. Seeing what comes up.

This is all I can manage for now, but I’ll be back to finish. Maybe.

KF x


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