Hands up if you remember that amazing movie- Never Ending Story. No, I'm not talking about the adult version aka the laundry basket.
I mean this one.
Yes, of course Bastion is one of us. Why else would we all connect with him so much!
Her name is Moon Child btw. I know you've all been trying to work it out for the last thirty years, so you're welcome.
So what the eff has never-ending story got to do with my PDA brain?
Well I'm about to demonstrate to you what it feels like to have a brain like this one.
First up, if you've never heard of PDA it stands for Pathological Demand Avoidance. There's a lot of us out there talking about it.
PDA Our Way and Kristy Forbes come to mind straight away. I love both those pages and encourage you to check them out.
I don't like the term much in all honesty. It makes us sound like we choose to be avoidant, which is definitely not the case.
Like most crappy explanations written by those who are just looking in instead of actually experiencing this, it lays the blame on our shoulders as always.
I mean, this is the definition: Pathological Demand Avoidance is a condition associated with Autism Spectrum Disorder (ASD). It is a rare behavioural phenotype of ASD that is characterised by an overwhelming or obsessional need to resist or avoid demands, which can often lead to sensory overwhelm causing meltdowns and violent outbursts.
But what is actually happening within those of us who have it?
This is my PDA just chilling away in my brain. It is snoozing, with an ear on what's happening around me, like the Sphynx in the movie.
I like to call it Pervasive Drive for Autonomy though. Because I am not trying to avoid things. My brain just likes to come up with ideas itself.
It's as stubborn as stubborn can be, and so if someone or something else decides things for me, they wake up and start taking notice.
They peek out from under their eyelashes, just to make sure we're still getting a choice here. It is still our decision to drink that water, even though we know that if we don't keep hydrated it's going to throw those electrolytes all out of whack. Right? So lucky it was our choice to drink that whole 2 litre drink bottle, because that's what we wanted to do yeh?
So we avoid the POTS attack today with that cool choice we made. Or maybe we didn't even think about it as the drink bottle was just sitting there by our elbow, so we just picked it up and drank from it over the course of the day as there was no demand placed on us by anyone.
Cool.
Wait, what? I NEED to eat? That feels a bit different then the drink bottle. They gotta sneak a peak at this coz hmmm. Who said I NEED it? I'll decide that one myself, got it?
You can eat what you want though. Choose between these two things.
I know I need to eat. I can't take my meds if I don't. But that PDA in my brain doesn't like to come at it that way. Probably would have been better to just let me know you're going to have your meal, and see if I wanted to have mine too. That doesn't feel like my autonomy is taken from me.
Those eyes won't close again now.
They're watching.
You've woken them up and they're not happy about it. Because getting woken up IS a huge demand.
Just like being told to go to sleep.
So they're watching now and they're pissed. Don't know how many 'got to's' 'need to' or 'have to's' are left in me before this happens.
I have no control over this. It doesn't matter if the demand is for my own good, or is to keep me safe or healthy or whatever.
I'm not trying to be oppositional, it is not as easy as just doing what's best for me. I'm not just trying to piss you off.
Child me was not trying to be disrespectful, or argumentative or all the other things I got called.
My brain just likes to blow up anything that felt like I lost control of my own autonomy.
There's no amount of smacking, or shaming, no begging or reasoning and no shunning or gaslighting that is going to change it.
I'm wired that way.
I need to just roll with it.
Like Atrayu when he beats the sphynx gate.
I mean, it is also what makes me the fighter I am for the rights of our community. It is the non conformist in me. The social justice warrior.
Without out, I am not who I am authentically.
And neither is your child.
Reword things. Take the demand away. Teach autonomy and mean it. We can thrive or just barely survive as the anxiety that courses through us when these needs are not met is overwhelming.
All behaviour is communication so look behind it.
Connect in with those pages above. And others like Reframing Autism and Yellow Ladybugs.
Follow autistic creators and give your children role models they can relate to. Like Chloé Hayden, Summer Farrelly or Hayley Cromer.
I share my own experiences to help in some small way.
Share yours with your children.
It is important for us to unmask ourselves and make sure that we can be who we are.
Authentically, Autistically Ourselves.
Comentarios