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Image is Kristy, from another time. She has shoulder-length dark hair, fair complexion from never seeing the light of day, and brown eyes, looking directly at the camera with a dazed, exhausted, burnt out demeanour and expression. They are wearing a light pink pyjama top, unable to make it to the shower due to overwhelm and full time caring. The background is plain and light-colored, providing a clear view of the individual. The overall appearance is candid and unfiltered, with natural lighting.

I never want to forget.

autism autistic autistic burnout communication community identity parenting trauma Jan 05, 2024

This is an image of me, deep in the trenches, around a decade ago.

My husband would message from work each day and ask how 'things' were.

Some days, I couldn't speak. I'd send pictures. This was one of those days, and I remember and still feel that exact moment. I was in the bathroom, sobbing..again.

I'm just shifting into recovery from that time around now. Lots of therapy, writing, singing, connection with Country.
But back then? For six years, we were unable to leave the home as a family. I could count on one hand the amount of times I went anywhere. There isn't enough time or language or space to be held for the hell it was.

The loneliness. The isolation. I didn't just 'feel' alone; I was.
I was completely alone.

I want to see these pictures. I want to show them.

Why? Because I *never* want to forget.
Why? Because nobody comes into this space and this culture knowing what they do today.


If you're neurodivergent and thinking that your life experience is not valuable to others, I want to encourage you with love to consider otherwise.

When I started out in this space, I was terrified.
I didn't tell anyone I was Autistic for a while. I was frightened that I'd not be believed (that happened, still does), or that people would think I was unreliable in my thinking and doing because I'm Autistic (that happened, still does).

There were a good group of us internationally, writing about our experiences online and the courage that it took, just to show up and write with honesty was also terrifying. My stomach would churn and I was dysregulated a lot, with both the bad stuff, and the good stuff.

But all I did was write.

I wrote about my children and I and how we connect, I wrote about hope and love and change, and the people started to show up.

It has not been easy. Boy oh boy has it not.
But this I know for sure.. it is so worth it.

Families, carers, professionals need to learn from your lived experience.

Your experience, your pain, your joy, can be transformative for others. So many times I get caught in the trap of thinking that what I know is common knowledge, and of no use to anyone anymore. But that's because I move in neurodivergent circles and this is our culture.
We know what we know and it's normal for us to know this stuff because it's our identity and our culture.

Families, carers and many professionals don't know this. They've been told otherwise.

Much of their support is informed by archaic textbook versions of autism written by non neurodivergent people studying us via a biased lens of behaviourism.

Refrigerator Mother theory has not died. It has only morphed and grown into FII (Fabricated or induced illness), professionals engaging in mandatory reporting and falsely accusing parents of abuse or neglect when children can not attend school, the belief that parents are causing their child's disability (think parents being told their anxiety is why their child struggles, etc)..and more.

I'm not asking anyone to save people. This is not saviourism. It is being *in* community. It is showing up, warts and all. It's privilege and not all of us can do it, because not all of us are safe to do so.

Nobody is a leader in this space. Neurodivergence is a human experience, marginalised and pathologised as disorder.
I meet people in my communities and my programs as one of them, because I am.

We are a community.

Decolonising my work means breaking down hierarchies. That model has to go and being a PDA Autistic, I can't engage with people in power imbalances anyway.

Being in community for me means that I share my life. I share my joy, I share my pain and I *know* I don't have all the answers. Nor would I ever claim to, or enforce a generic framework.

I see so many neurodivergent people arguing in comment sections, and getting really passionate about their stance. The passion is wonderful; and it belongs somewhere that will help others.

The arguing is not.

Abusing families and carers is counterproductive to positive neurodivergent identity and culture.
It is counterproductive to helping coming generations of neurokindred.

Many of these families consist of parents who are unidentified Autistic, among other forms of ND and they often don't know. They too, are suffering.
They have lost so much in their bid to support and sustain connection with their child, in their drive to advocate for the right to education, in their courage to live, be and do differently.. keep their child alive.

Some of us are thriving, and some of us are surviving. And many of us move between the two, it is often the nature of this identity when navigating a neuronormative world.

I know we carry trauma. I know we are often abused or trolled or treated awfully by others. I know. Trust me, I know.

I'll never forget my introduction to the Autistic community. I was on a thread, arguing that something 'made' my child Autistic. That there was no family history of Autism 😆 (more like no family history of neuronormativity).

And, an Autistic man said to me, plain and simple:

"Kristy. Your child was born Autistic, and they are meant to be this way. And they probably got it from you. It's highly likely that you're Autistic."

I was not angry, but hopeful. The rest is history.

But there's a difference between being straight up, like we Autistics can be; and piling on a parent who uses a word we don't. Or who doesn't know all the things..

Nobody comes into this culture knowing all the things.
Not even neurodivergent people.

We are on the same team. We are neurokin.

I was in so much denial in my lifetime of masking, I was going into Autistic spaces and asking questions like "Why does my child rock?" and I was made fun of. I distinctly recall someone in the community telling me "OH, we all like to rock on our ergonometric chairs whilst working on maths problems.." and I believed it.

I didn't get that I was being made fun of because I'm so literal.
Because I'm Autistic.

But when someone helped me to realise, I felt so much shame. Just as I did all the other times in my life where I asked for help (agonising to do so being PDA) or tried to fit in.

Sometimes, people are shit. It's true and we all know it.

But there is a significant difference between being conditioned to live one's life from a foundation of lies (capitalism, ableism, racism, sexism, and all the other power imbalances and social hierachies that stem from white supremacy) and having a child that is suffering so much they no longer want to be here, in their primary years. In early childhood.. and the parent that misdirects their struggle and fires off at ND people.

That's never okay.

As parents, we carry our turmoil as energy and we take it home to our children. It riddles our lives and our connection with our babies like a potent toxin and when and if the miracle happens that a parent or professional or carer begins to deconstruct and disassemble that foundation, I want to be here to meet them.

Parenting for many Autistic people (identified or not) often begins with post natal depression. And at times, it's a lifetime of unidentified, unseen, unheard and unknown trauma beginning it's slow and steady trickle into our lives.

It's no longer having the space and down time we used to have.

It's being responsible for not only the needs of another human, but raising neurodivergent humans takes a paradigm shift. It's a shift to ND culture, but it's also often a coming home to oneself.

This is huge. It is life altering. It is grief and relief and joy and pain and loss and excitement.

So I work on myself. I sit with discomfort and I go into it. I mess up. With people in the community, with my writing, with my speaking, with my children and myself. And where appropriate and possible, I make amends.

But families need us.
They need your experience.

Our parents, families and carers; our professionals and supporters need to learn from lived experience.

This community needs you, in whatever way you feel safe and comfortable to show up.

The changes in my own life, my own circumstances, my own unmasking, my own relationships, my own unschooling, my own going solo, my own leaving the teaching profession, my own 'stuff' have been met with community each and every time this year.

Compassion, empathy, love, and passion.

This is community.

- Kristy

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