Is our approach counterproductive_
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[00:00:00] Oh, hello and welcome to In Tune Pathways, the podcast. This is the place where we explore autistic identity, culture and family lifestyle. I'm your host. I'm Christy Forbes. I'm a late identified autistic woman. I'm an educator. I have ADHD and I am a PDA autistic. If you're not sure what PDA is, it stands for Pathological Demand Avoidance.
We'll get into that in future episodes. I'm also a parent of autistic children and my passion is shifting away from the medical disorder narrative and into a newer awareness and radical acceptance of the social model of disability. Thank you for joining me.[00:01:00]
All episodes of the In Tune Pathways podcast are recorded on Wurundjeri Country. The Wurundjeri and Woiwurrung people are the traditional custodians as part of the Kulin Nation. I pay my deepest respect to Elders past and present, and at In Tune Pathways we are committed to the amplification of First Nation voices and decolonisation in our work.
Sovereignty was never ceded. This country always was and always will be Aboriginal land.
Any suggestion for how to encourage a child who is very reluctant to leave the home to go out to engage in the kind of somatic support you're describing or even just do it at home? Or do we just continue to wait for them to show interest and not encourage them to do anything if their reaction is to say no to everything?
We're starting to worry that our [00:02:00] current approach may start to become counterproductive and are wondering if it would be helpful for us to be more proactive. This is something that most families come up against, that, that very fine line and that fear that arises because what we see is that when we start backing off and we start respecting that threat response and that nervous system state, we find that our children's capacity appears to lower.
They start saying no to more things. They might start restricting their diet more. They might start not coming out of their room for a really long time. Somebody asked this in the group actually and said, does this ever backfire? Do our children ever end up worse off because we give them space and we accommodate that nervous system response?
And my response to that would [00:03:00] be before we made the decision to approach things the way that we are now, what were we doing? And why aren't we still doing those things? There have been many times for me throughout that process with my children where I would get into a bit of a panic and I would say to myself, this is not okay.
The screen time is relentless and not coming out of their room, like this is really bad. What, this can't be okay. I'm, I would even think, am I failing my children? But the reality is. So there's a process for me. I say to myself, okay, let's unpack this a bit. Am I failing my child? If so, how do I think I'm failing them?
So let's use the example of a child that says no all the time. How am I failing them if they're saying no [00:04:00] all the time? I'm allowing that process and I'm not being proactive and I'm not being more encouraging. Why? Why am I not being more encouraging? Why am I not being more proactive? Because I tried that.
Because I've tried all the things. I tried bringing in therapists. I tried booking appointments to leave the house, to do it online. I tried engaging therapists just for myself and learning. I tried reading all the books. I tried absolutely everything I could ever think of and then some. And why am I not doing those things anymore?
Because it resulted in a child that won't leave their room. Because it was pressure. Demand pressure. So there's a very fine line. And I think sometimes we see, somebody mentioned in the group the other day, there are other families that their children are going to school and doing things and [00:05:00] There might be, and that's wonderful, but we are all so completely different and at different parts of the process.
So those families whose children are going to school, something that is often overlooked is And it doesn't have to be about school. It could just be leaving the house. Some of those children had a lengthy period of recovery first, and then they were able to feel safe and re enter life in a different way.
But they were able to re enter life. Some of those children have families who don't have the privilege of bringing them home from school and thinking about that for those families is hard, very hard. Some families, their children are mandated into school and they don't have a choice and some [00:06:00] families might believe that their children are PDA and they may not be.
They may be autistic with demand avoidance. which is different. They may be in burnout, which is different. But burnout for a PDA er can take, for some children it can take a year or more to go through that process and come out the other side. So when I do think I'm failing my children or I've ever thought that, I become curious about what it is that's triggering those thoughts for me.
And most of the time for me it's comparison, compare and despair. I think it is so terrifying. I really understand that experience. One of my children really did stop coming out of their room for a really long time. And for a really long time I would prepare food and just take it into their room for them.
They weren't showering for weeks and weeks on end. [00:07:00] And it was, it felt really bleak and really isolating and really lonely. And we were really scared for their mental health. And, our reality was, We'd had them connected with a psychologist. We had them connected with several therapists, and unfortunately, those therapists didn't have an informed understanding of PDA.
And so they were having our child set goals, and every single month our child would go back with heightened anxiety because they felt that they were failing everybody because they weren't able to do it. achieve these goals that were being set. Well, they were setting these goals with a psychologist because they wanted to do those things.
But what we want is separate from what our nervous system is responding to. So that's where we were for a long time and slowly but surely it passed and [00:08:00] they started to re emerge and they had a screen with them all the time, but they started to re emerge. And I think the hardest thing for us as parents and adults for many of us is that conditioning and that, that imagined or that ideal around what it's going to look like.
What is this process going to look like for our child? We can't lose them. We can't let them go into the abyss and never come out. That's a very real fear. I completely understand. Their nervous system is different, their neurobiology is different, and their recovery is going to be different too. And, you know, We can continue to try whatever we think might be helpful.
It is all trial and error. We can continue to attempt to implement being more proactive, and we will learn whether that is [00:09:00] helpful or not by the experience we have. That's the hardest thing about PDA. There's no textbook about this that is a one size fits all. Truly, there isn't for any human, but we've been, again, conditioned to think that we're all the same, especially if you're autistic.
Oh, heaven forbid. The books, it can be a lengthy process. So what I would suggest doing for ourselves as the adults is immersing ourselves in community where there are families who have come through the other side, and there are lots of families who have come through the other side. There are people on social media.
that talk openly about what it was like, what we did, and what it's like now. And the process is exactly what we're talking about. It's so [00:10:00] hard for parents and adults and for the children. It is one of the hardest things many families will ever experience. But on the other side of pushing too much, often will be children emerging that we're not familiar with, and that is scarier than anything.
The propensity for physical aggression, for things to get far worse than they are, is very real. And I don't say that to scare people, I say that because I'm being honest, and I think it's really important to know the difference between what our child wants and what they're capable of in this moment, just for now.
Because I know as a parent, PDA, I panic about everything. Not projecting into the future is really hard, especially when they're so young. If you're wondering if it would be more helpful to be more proactive, The only [00:11:00] way to find out is to try. If a child is already saying no to a lot of things, that is not their conscious no.
That is. their nervous system communicating through them. And we know this because we see our children suffering, because they want to break through that barrier too. So much, so much. And as an adult PDA er, there's nothing I wanted more to stay at school and to be with my friends, and I couldn't. I couldn't.
So the fact that so many families now have this information and implement it in ways that work for their families. is such an [00:12:00] advantage.
