Does life with PDA get easier with changing circumstances

Autism and PDA: Life with PDA

Does life with PDA get easier with changing circumstances? Autism and PDA or Demand Avoidance is a huge topic right now. We are running our next live webinar on Autism and PDA soon. Each session we run on Autism and PDA brings new questions. “Does life with PDA get easier with changing circumstances?” was a question posed recently at our autism course online on PDA.

Possibly. Possibly life with PDA get easier. It depends very much on what circumstances change, and in what ways they change. That feels like a non-answer but it is important to appreciate that ‘changing something’ is a good goal but we absolutely need to be clear what we are looking to change, in what ways, and crucially, understand what we are looking to achieve and how we expect that to come about. To do that effectively, we have to be very sure of how the complex cause-effect chains connect for an Autistic person with PDA, and how seemingly helpful changes can be read as the opposite.

At the heart of the problem is an impossible knot – knowing someone is making a change in order to reduce triggers can itself be a trigger because by so doing you are kind of saying the person cannot control themselves. This is life with PDA. They may agree. But that does not alter the fact that this can feel like further proof if incapability.

Control is the most important concept in all this. Without digging too much into theories about the nature of Self and so on, we each live in a model of the world which we construct in our heads. Levels of significance and meanings are attached to certain things based on past experiences and imagined futures. Essentially, it is our best effort to make sense of this impossibly complex world. Within that, certain things are tagged as ‘should be within my control’ or ‘should be outside my control’ and ‘is in my control’ or ‘not in my control’ as well as ‘this matters to me’ or ‘this doesn’t matter to me’ and from that collection of tags there’s always going to be a few things that get tagged ‘should be within my control,’ ‘not in my control’ and ‘this matters to me’ and we could see that as a form of motivation to engage in activities to do something about it.

Here’s an example based on something from the February Autism and PDA webinar chat:
You want the curtains pulled (this matters to me)
There’s no rules or impediments to pulling curtains (this should be within my control)
They are out of reach so you get up from the sofa to pull them (this is in my control)

Now, you’ve felt in control of this, been motivated to act, and have proven (surprise!) that you were correct to feel in control of this. It is a tiny thing, but validating.

This is all perfectly everyday and commonplace. But when an experience gains huge meaning in your mind, an action becomes terrifyingly transgressive or shameful, or requires gigantic physical or mental effort, and so on, apparently (and actually) trivial actions and events become more than themselves, and take on symbolic roles for us. Doing something or experiencing something gets linked to great effort, great achievement, or great distress, pain or shame.

This happens because our read of how much we feel we should be able to control this is raised in importance, and the consequences of not controlling it are equally raised in importance. Failure looks catastrophic to the Autistic person’s life with PDA. Losing choice over what, where, when, how… these become life-changing crises in ways that, looked at dispassionately, seem bizarre and illogical. 

This is the skewed mental world model that generates what we call PDA (Pathological Demand Avoidance). That does not mean the person is flawed or twisted or defective, just that they are injured, scarred and in crisis.

Making a change… can make it worse. Or it could begin a (very slow) process of regaining a sense of control, recalibrating the crisis thresholds in that world model. So, yes change of circumstances can make things better. But the change has to be carefully chosen, setbacks need to be expected, and above all the Autistic person experiencing PDA has to feel they are in control of every step. They need to own the decisions. You, as an outsider, need to become their servant, their trusted counsellor, soaked in humility and patience. Not something our society trains us for by any means. In fact it is something we are taught to recoil from.

Place the person experiencing life with PDA at the centre. Seek their wisdom (after all, they are the only person who can access their inner world model), let them know you are there to support them in seeking a way out, their servant almost, and that as and when they have made a decision about some change, they need only summon you to notify you and issue instructions.

This seems bizarre. Wrong. But it is like a role-play where you each adopt characters and perform a ritual. Nobody is fooled. We all know where ‘power’ lies, but in our roles, we assume supporting positions in the relationship. This may be the first time ever your PDA person has experienced a real sense of control over serious decisions and it’ll take a bit of time to get used to operating the controls but they’ll get there. This is, after all, what they (and all humans) crave for – some sense of control over the course of their life.

Can changing circumstances bring positive results to life with PDA? Yes. But this is not something we can do to a person. It is not the case that any change will magically bring progress. It is something they need to be in charge of, and trust those working with them.

by Stiof MacAmhalghaidh

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