[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 decolonization in our work.
Sovereignty was never ceded, this country always was and always will be Aboriginal land.
School trauma, PTSD, 11 year old boy, three years since breakdown, been living our lives since no or low demand PDA home life and focused on healing, no school. What's the next step for us to heal, to help him heal from PTSD? His [00:02:00] symptoms are so physical when triggered by anything that reminds him of school.
And has not been able to socialize with other kids since. Thank you for generously asking this question, because I know that you're not alone. This is a really common experience in our families. So I want to start by talking about PTSD and what it is. What trauma is. And it looks different for everybody.
Some people find it hard to believe that our children could experience trauma at such young ages. But I don't think that we think or speak enough about the fact that trauma for our children can begin before they even begin school. Because from the time they come into the world as who they are with that strong spirit, they're constantly faced with barriers and people trying to disconnect them from that spirit and who they are.
And there's pain in that and there's confusion and there's displacement before they even begin [00:03:00] to enter society. I think too that Inside of our own family culture are us, the adults, who are also experiencing our own displacement as human beings, because we are all expected to comply and to conform and to adapt, and that's not always easy for people to do.
So our children notice those things. They notice those things. And In that noticing, sometimes there can be fear attached when we see our protectors and our nurturers and our supporters inside of their own struggles and their own battles. And sometimes as adults, we aren't even aware of those struggles and battles because we're so conditioned and so accustomed to living the way that we do.
So our [00:04:00] children start to notice and they say things. And when children speak up about what they notice, More commonly than not, they're quickly shut down and a lid is put on their noticing because it's a threat to them being able to comply and adapt to a world that values productivity and compliance.
So I think school definitely is a traumatic experience for many of our children, but I also think it begins before that. And I do think there's wisdom that we have, that we carry, and our children have greater access to that wisdom and that knowledge, because they haven't yet been as beaten down as we are as adults.
I know this sounds very intense, but I just don't think I can deliver it any other way anymore, because I feel like we can dance [00:05:00] around the issue of displacement for the rest of our lives. But this is truly what it is. It's human beings coming into the world and being shut down and minimized and rejected for who they are.
And I think it, it makes sense to me that our children experience trauma. They have a wisdom that, that more and more is coming in terms of demands and expectations. And what we perceive in PDA children is. They come into the world, they're fine, everything's fine, nothing bad has happened, everything's okay, and all of a sudden they can't do what we want them to do.
And I think that is such a superficial way of understanding what's happening, because our children come into the world with purpose, they know who they are, and when they try and demonstrate who they are, when they try and express who they [00:06:00] are, they're constantly met with, resistance. And so they learn to start shutting down, but there's a process before the shutdown, there's a fight first.
And so they already know before they get to school, even when they want to be there, because many of our children want, they want to thrive in society. They want to live these lives where they get to participate in all the ways that people do, but they're met with so many barriers that by the time school comes about, They're already halfway there with the predisposal to trauma.
There's that. PTSD is trauma that continues to live on and show up to the point where it greatly impacts our lives, our everyday lives, in really detrimental ways. It robs us of a quality of life. And [00:07:00] I think that these are rational responses to distress. We also as a society have this, this way of looking at things like PTSD.
We're putting the word disorder at the end of that. And I think it's very orderly. Post traumatic stress is very orderly and rational. Because how could we expect anybody, who has experienced what many people have through their trauma to not show up in the world that way. So then shifting into the experience of post traumatic stress disorder, we like to pathologize the wisdom of our bodies and our brains.
And so when we say post traumatic stress disorder, what we're really saying is the body knows. His body knows, his body remembers, his body is wise, and his body remembers. is doing everything it can, his spirit is doing everything it can to protect him from further harm. And it can become maladaptive, absolutely.
[00:08:00] So what we require when we're in that state is long term, consistent evidence that we can trust, That we will be heard, that we won't be forced, and that space will be held for us. In our community, often what we see is families told when their children are experiencing trauma or post traumatic stress to go no demand, low demand, to change our language and to set goals for recovery.
And I think all of these things can be helpful, but this is such a personal experience. There's no individuality in these approaches. So as an example, what no demand or low demand might be in my home for my children might be something completely different for another family. And so when somebody says to me, we've been [00:09:00] low demand, no demand, I have no idea what that means because I don't know what it looks like for each family.
But I want to talk a little bit more about. the concept of no to low demand, its purpose and what it's supposed to do. A lot of families come away with the idea that if we just give our children space, And we don't ask them to do things and we allow them time to be on their screens or do whatever they need to do, then they'll be okay soon.
And I think there's so much that we're missing out on with this. There's a very superficial understanding of what this might look like. And one thing in particular is burnout. Burnout is really complex. And our understanding of what burnout is very superficial too. When you come out of the environment that is causing you [00:10:00] distress, or that is distressing you, you come out of survival mode, but you may not come out of survival mode straight away.
Because when you experience trauma, you are in fight or flight, consistently. That means that your sleep is interrupted, your eating is interrupted, the way you engage with others and relate to others. is disrupted. Everything about your being is disrupted and survival has kicked in and the threat response does not care for details or affirmations or language.
So it's doing what it knows to do best. It's doing what it's built for and that's to keep us alive. There's life and there's death. And the threat response operates around those things. Safety, no safety. When a child comes home from school, isn't going to school anymore, sometimes it's hard to trust [00:11:00] in that.
Sometimes it's hard to trust in that the people around us can guarantee that we will never have to return. And sometimes we know as children that might be beyond our parents control. And so that might keep us suspended. in trauma. We also know that what we notice in adults is not often confirmed by adults, because as adults we are conditioned to deliver safety to our children at any cost.
That means we're not honest sometimes in order to protect them. PDA has noticed this. And they can sniff out a gender straight away and dishonesty straight away. Now this isn't the same as saying, adults aren't telling the truth and they're bad and wrong. There's no morality attached to it. It just exists and it is what it is.
When a child comes home from school, they're not going to come straight out of survival mode. They're probably going to remain [00:12:00] suspended in it for some time. This means that they may isolate further. And I think that is a rational response to what's happening. They're seeking safety. And sometimes there is safety in isolation.
When we've existed in the world and everywhere we've turned to find safety has been met with barriers. or lack of safety, it makes sense that we would isolate. So then on that pathway in isolation, we might be glued to a screen, we might be reading, we might be sleeping. When our sleep starts to change and we start to sleep, that is often a really good indication that we are actually coming out of survival mode.
And if we can imagine a person or any living being that has been in survival mode, fighting for their life in their primitive brain and [00:13:00] being for extended amounts of time, means that they've experienced prolonged chronic stress, their senses have been heightened, imagine when that starts to de escalate how exhausted it is.
You would be absolutely exhausted, and this is often a time where illness might set in. Things like chronic fatigue, fibromyalgia. It means that our muscles start to relax after being tense. We don't talk enough about what chronic stress does to the body, what trauma does to the body. So we have all this physical undoing over the time that we're coming out of survival mode.
And so we might start refusing to shower, we might start refusing to eat, we might start refusing to do a whole lot of things. And what it can look like to us [00:14:00] as families and carers and professionals, is that a child is still in fight or flight. and survival, and this is not okay. But what's happening is, they may actually be in the next phase toward recovery, and they need incredible, incredible amounts of recovery.
So if we think about the time span that a person has been in survival mode, and then we expect them to be okay, after a couple of weeks, months, years, Rationally, logically, they don't quite match up, do they? If we calculate the amount of time, even before school, because for many of our kids it begins before school.
If we calculate those years, that time span, and then we look at how much time is needed for recovery, it could even outlive the amount of time we've been in chronic stress. So when a child starts to come out of [00:15:00] survival mode, they're going to be exhausted, truly exhausted. It's hard for us as adults to know that we can truly let them be.
Because we're also bombarded with a lot of pressure around, you have to do this thing to make them well. You have to get them up and eating these foods. You have to get them up and exercising. You have to take them away from their screen. And that's a whole topic on its own. But the hypervigilance does not disappear.
The survival mode might, but the hypervigilance is always switched on for a PDA er. We hear everything, we notice everything, because we come into the world that way. We come into the world as little beings that notice. We are noticers. And so we are always switched on to that. We are always. always highly attuned to [00:16:00] everything.
So any infractions during a recovery process, someone coming into the home and we hear them in the kitchen, like a grandmother saying to our mother, Oh, don't you think it's unhealthy for them to be in bed for so long? Oh God, we didn't have screens around my time. Anything even like that can set somebody in recovery mode back instantly.
So, it's so fragile and so delicate, and I think we constantly put the responsibility with families. We constantly say, well, you've got to do this thing. You do low demand, no demand, change your language, use a declarative language, do all these things. But the outside world still exists, and it is not trauma informed.
So there are still systems that exist that uphold [00:17:00] oppression and barriers related to what our children face. So this needs to change at a systemic level. So we can do all the things that we can do, and we are still exposed to the same society with the same expectations. And we know this because When our families are recovering our children from trauma, we are still being told by others, we need to set goals.
You need to see a professional. And often we've seen every professional under the sun, and none of them have been helpful. And that's not because they're bad people or they're sinister, it's because we are all system impacted. And so we only know what we only know. If you're here, and you're asking questions about your children, and they're suffering and they're struggling, then that is a family centered challenge, set of challenges.[00:18:00]
And there is hope. What's the next step for us to help him heal? You are doing it. You are already doing it. You are holding space for all of him, no matter how he shows up. And I know this is hard because our children can be very aggressive, and that's the fight in them. That's the fear. That's the response to distress when they notice things.
And that doesn't mean that you're causing that. Because we're only human, and we can only do what we do. And it's okay for us to be imperfect as well, because that is safety for our children. If we constantly are rushing around trying to be something that we're not, trying to sustain something that is completely unsustainable, [00:19:00] then that is perceived by a PDAR as a form of dishonesty as well.
They see us pretending. They see us trying to do something we can't do. And they see us under pressure, and they see us suffering and struggling, and that is a threat to their safety. So I want to say to anyone here today, if you, excuse my language, but if you lose your shit around your children, if you raise your voice, If you cry, if you make mistakes, if you become frustrated, if you become overwhelmed, you are showing your children you're human and there is safety in that.
But we're not told this. Because mothers in particular have been historically abused and pressured to show up in the most perfect ways. [00:20:00] And it's unrealistic and unsustainable. Because what do we do when we exhaust ourselves recovering our children, and then we come out of survival mode? And we know what happens there.
Because we've just held our children through that process. So when our children can't come out of their room, we can rest. When our children are on their screens. Maybe we can join them. In our home we do a lot of parallel living. We might be in opposite rooms on our screens. We might be in the same room.
I might be working on my laptop and my child's minecrafting and they're showing me their creations and that is connection. We're pressured to expect this typical lifestyle. We're not typical. There's no such thing as typical, actually. There's no such [00:21:00] thing as typical. There's only what is upheld as this imaginary social cultural construct that everybody is supposed to adhere to, and it doesn't exist.
If it did exist and it came with ease, there wouldn't be so many people suffering in the world. So you're doing all the right things. And I hear you when you say it's hard, and I want you to know you're not alone. If there's some way that we can reconnect our children with their spirit. If there's some way that we can offer them what is true and what we can guarantee, what, what are those things?
Sometimes I like to write down things that bring us joy. And us, it has to be us. It can't just be our child. We're so fixated on helping our children, but we don't understand that we are all connected. We're not separate, we're not separate. So if I'm suffering, it is [00:22:00] counterproductive to focus on recovering my child.
I am worthy of the same compassion and care as my child. And in fact, I have a responsibility to ensure that I matter and that I live in a way that demonstrates that I matter. Because I can't heal my children if I don't heal myself.