[00:00:00] Oh hello and welcome to inTune Pathways, the podcast. This is the place where we explore autistic identity, culture, and family lifestyle. I'm your host, I'm Kristy 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.
[00:00:37] Ooh 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 inTune 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 inTune Pathways, we are committed to the amplification of First Nation voices and decolonization in our work.
[00:01:27] Sovereignty was never ceded. This country always was and always will be Aboriginal land.
[00:01:38] What if you no longer believe mainstream schooling is the way to go but your teen is stuck on only wanting to go to a particular school? That is, doesn't want to homeschool, no alternative, better supported schools? Just the one she was enrolled in for year seven last year but couldn't go to because of burnout and anxiety at the time.
[00:02:02] And that two of her friends go to, is it worth going with her desire even though there's a high chance she'll hate it, it will lead back to burnout. This is a really common scenario. I always give the caveat at the beginning of any Q&A that I don't have the answers for everybody. And sometimes there are no solutions.
[00:02:25] This is a process. And our children have a lifelong disability. So, PDA being autistic, being neurodivergent is a lifelong disability. Not to be confused with disorder because I resist the idea that I am disordered. We will fluctuate in and out of burnout all of our lives. And this is part of living within a capitalist society really.
[00:02:54] There's no other way to put it. There are times where we will be required to mask. But I teach my children that masking is a tool that we choose when we need to, and where to use it. Your scenario that you're outlining, there are a few things to address around this. So, if your child is in fact a PDA autistic, and if anybody is joining today that doesn't know what PDA is, PDA stands for pathological demand avoidance.
[00:03:31] It's a really unfortunate term, but it basically means that we have an extremely fragile nervous system based disability. And it is primitive, it is not conscious, but our conscious thoughts and feelings and choices are driven by this really fragile nervous system. You cannot be PDA without being autistic; that's what the research currently says.
[00:04:07] So, it's exclusive to autistic people. Now, when a PDAer is suffering in any way, there's often, especially in early childhood, especially in the teen years, there's a disconnect. For some of us, there's a lifelong disconnect between what we believe is our conscious thinking and doing and what's actually primitive, driven by our nervous system. And most of society is completely disconnected from that as well. So what that means is we're held responsible for our behavior whilst nobody has any inside information about our internal experience, even us.
[00:04:41] So when you're a child and you grow up in a world that tells you you're lazy, or you're selfish, or you should be able to do this, or you should clean your room, or everybody goes to school, and there's inadvertent and advertent harassment and bullying of human beings to be able to fit into this society and be a functioning human being. So when you're a child, you observe all of that and you get the messaging loud and clear, and you turn on yourself often. So we can come into our teen years thinking we're no good, we're hopeless. And we will give people what we believe are genuine reasons for the way we are. So if somebody says in the most compassionate, empathetic, caring way, "I think we might look at not returning to school because you're in burnout," or "because you're PDA autistic." For a PDAer, whether they know they're P
DA or not, the first challenge there is, it's really triggering and feels very unsafe and a compromise to our autonomy to be told anything about who we are and what we need.
[00:06:21] Even if we recognize those things for ourselves, even if the other person is right, it's very hard to receive any kind of support that is, um. And this is why I think that things like declarative language, low demand parenting, they're great in theory but they themselves can be really triggering as well.
[00:06:44] So we need honesty and transparency from people, but telling us who we are, telling us what we need is very hard. So even if we know we're in burnout and we're really tired and we really shouldn't be at school, we're going to say things and I cannot speak for everybody, I can only speak about my own experience, we're going to say things like, "I'm only tired because I've been staying up too late. I'll just stop gaming, I'll put the screens down and I'll be fine for school." And we'll throw out all kinds of explanations like that, and we're not lying. We really believe this, and we're really trying so hard to do what is perceived as better. When you were young, you didn't have a disability because there's not a lot of understanding around that when you're young, and whilst we have an adult community that says we're proudly autistic, I am proudly autistic.
[00:07:48] It's taken me a long time to understand what that means. And I have a lot of autonomy in adulthood. So when our children say that they want to be at school, there's the resistance to other people telling us what we need. There's also being largely socially motivated and this is why a lot of our children won't get an autism diagnosis.
[00:08:17] Even when they're assessed because unless the person's very skilled and has an understanding of PDA as well, our eye contact is better. We are socially adept at surface level. We love people. Most of our interests revolve around people-centric or character-centric or animal-centric themes. So living beings are often part of our special interests; might be psychology, anthropology, athletes, singers, and performers, animals, werewolves, that sort of thing.
[00:08:55] But it is really challenging when we know that the school system may burn our children out again. And you know, knowing that it's a lose situation as a parent, we can say no, "I know this isn't good for you and I know it's not right for you and I cannot let you go," and that will cause distress. And it will also cause a lifelong touch of resentment and injustice.
[00:09:31] "I wanted to do this thing and I was not allowed to. My parents did not honor my need to figure this out, to try this my way." PDA has a wired for being autodidactic and that's not just with our learning, it's with our life experiences, developing resilience. I do this a lot. I hate the word resilience because we are very resilient but anything I've ever learned in life that was worth knowing and learning was through a lot of trial and error and a lot of pain. And I don't wish that on anybody but sometimes it's not a choice either because we like to discover things on our own. Now if we did say "Yes, okay, go back to school," then we are in the position where we're nurturing this child back to health and that's really tough as well.
[00:10:29] It hurts our hearts to see our children unwell and burnt out and suffering. And the flip side of that is that they come to their own understanding, "Okay, I've had enough now. I have had enough now." So there's heartache in either or. Sometimes in the teen years, it's not safe to be different and it's a rite of passage for our children to not want to be different.
[00:10:54] It doesn't mean that it's a rejection of themselves. It just means that they're navigating identity and separation from parents informing that identity. And so when you are in a learning environment or an online environment with peers, there are a lot of slurs and jokes made about anybody that's different unfortunately.
[00:11:22] And so we get the sense that it's not safe to be who we are. And so we mask and fawn for safety because our nervous system disability comes from approaches everything from two spaces, safety or lack thereof. If there's no safety, we cannot proceed. Sometimes that's conscious, most of the time it's not. If there is safety, we can at least be willing to try.
[00:11:53] But it's not something we choose for ourselves. So yeah
, I don't think that there is a solution to this for our children when they want to remain in the school system. Do they know that it makes them feel rotten? Yes. Yes. Do we just want to be a normal kid? Yes. Now when I say normal, I say that from the experience of a young person because many of our children will say that.
[00:12:24] I just want to be a normal kid. And we can. We can be our kind of normal, which is a really common form of normal. It's not rare. We're not superheroes, and we're not disordered. We're just autistic people. But yeah, I think an institution is an institution. And I think that sometimes for our kids, even with all of the most incredible supports, it still may not be the right space for them.
[00:12:51] But this is the double whammy too. Anything we say out loud, anything we think or feel, causes resistance in our children. So we're activating that nervous system and sometimes pushing them further into doing the thing that harms them the most without the intention of doing that. So we're stuck between a rock and a hard place sometimes.
[00:13:13] And we sit back and we watch this process unfold. Yeah, I always say that for us as parents, the best thing we can do is immerse ourselves in support and community. And because I'm PDA and I'm quite anxious, I've learned throughout my life to think about the worst-case scenario and set myself up for supporting that.
[00:13:43] Because anything less than that is manageable. So I think what's the worst thing that can happen? My child's going to be in burnout. They could become very mentally unwell. What supports will we have in place for that? How will I support myself to sustain supporting my child again? What can I start to set up now?
[00:14:05] And it's about having a plan for whatever does happen because I find our lives in our PDA, neurodivergent family culture and lifestyle, it can be two things. It can be supports for sustainability or it can be supports for recovery because prevention is very hard. It's very hard when our children are wired to discover things in life on their own terms.
[00:14:42] And I know that probably wasn't the answer that you were looking for or that might be helpful, but it's the only one I have.
