What is PDA?

What is PDA for me? I can only share my own experience.

When I was interviewed this year by a national newspaper on PDA, I told them I only care about families who are in crisis and having a hard time not being further vilified by the story. I didn't engage in discussion around anything else. This is my focus.

For me, It is inherent, and not acquired. I was born PDA and when I see people saying PDA is a trauma response, my skin crawls. A trauma response is a trauma response.

PDA for me is not having a choice about whether I can do something or not. It’s not being able to push through. It’s a lot of solitude. It’s also being deeply principled and not being able to shift from those principles even if I want to.
It’s not being able to get through school, even though I wanted to, even though I had many friends and did very well academically.
It’s being boundaried and understanding that non consensual advice giving robs people of their own inner resources to learn on their own terms (I offer advice only when asked).
It’s living as a contrarian and knowing I won’t be understood or liked for it, and not being able to be any other way.
It’s not being physically, mentally/emotionally, spiritually able to shift from what my gut knows, even though I really, really want to and will be punished for it.
It’s being grounded in relationships with others and navigating the world via an equitable lens.
It’s losing relationships due to the inability to change in ways others require me to.
It’s being deeply protective of the people I love and wanting to offer support to all who need it.

It is so many things. 

The landscape of what PDA is ever changing and very confusing for people. There are many elements for consideration:

-We’re still confused about what autism is
-Far more people will be identified as ADHD before Autism
-Many neurodivergent people who are ADHD and other variations of neurodivergence will be unidentified autistic as well as ADHD
-There are different types of demand avoidance, with varying origins such as demand avoidance related to executive dysfunction which is not PDA
-The research around PDA is young and a lot of it seeks to dismantle it’s existence at all, or labels it as an autistic profile
-People read a few things about PDA and are quick to accept it as their own identity without further, in depth exploration

Here’s my truth:

I can’t separate PDA from my autism, my ADHD, from me. It’s inherent to my being and has always been. It’s who I am, how I show up in the world and if it was a trauma response, with treatment the ‘characteristics’ would likely improve if not dissipate.
This past year, I entered into intensive trauma therapy for CPTSD. It blew my brain apart and I am not the same person. At all. My entire life has changed and I am still very much PDA. How do I know the difference between trauma and PDA? My best answer..I just do. PDA is who I am. Trauma is what I have experienced and I am healing from the many ways it prevented me from engaging in my life.

We don’t have a clear picture of PDA because the most common way we’re addressing it publicly is through a disorder lens. Even when we think we’re not. The conversations tend to centre around the ‘impairments’, the ‘deficits’, the challenges and the struggles. We’re mostly focused on early childhood, parents sharing struggles and ongoing dialogue about our PDA children not being able to attend school.
And just like there is such a thing as an autistic person ‘at rest’ and not as represented by the DSM as an autistic person with trauma or in distress, so too are there PDAers who are well, and thriving. We’re not hearing about them because why would anyone be out here talking about that? Social media is where we come to share our struggles and find solidarity.

PDA is a strength for me. It is exceptionally challenging, but it makes me who I am and I like who I am.

What about the research then? Yeah, I see it, I read it. PDA is a complex way of being and doing and I see people inside and outside of the neurodivergent community making assumptions about behaviour based on their own experiences ie “that’s just autism”, “it’s a trauma response”.
No, it isn’t. No, it isn’t.

The thing is, I don’t care to argue about what other forms of neurodivergence it’s tied to.

Research takes time. But let’s never forget the long way back from the research on autism alone. Refrigerator Mothers, eugenics, shall I go on? Parent questionnaires report on parent experiences, or at best, parents guessing what is happening with their children, and I mean no offense..I am one of those parents.

We have such a long way to go. PDA isn’t new. Ask us about our bloodlines and we’ll tell you.

But I exist. And I am a PDAer. I don’t care what part of my neurodivergent profile it is tied in with, and it isn’t a trauma response. 
The term alone has allowed me a framework for understanding myself and designing a life that allows me to be well.

Imagine if we put just half as much energy into helping people destigmatise themselves and their experiences, and providing support to families as we do arguing about what PDA is and who is right and wrong in their understanding of something so underresearched that nobody has the answers.

I’ll be here to help. I can only share my experience, and I’m not interested in arguing about what PDA is.

I can’t think of every single thing to write or say or cover to keep everyone happy, as social media tends to require these days otherwise people are ripped to shreds.

I’m PDA. I care that PDAers understand their strengths and qualities and I care that families are able to engage in relationships with their PDA loved ones that are meaningful. I don't think it's important to know whether PDA is connected to autism, ADHD or a standalone profile. It still exists and the fact is that anything most of us supporting families shares as helpful is good for all humans.

KF