[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.
Hello friends. I thought it might be helpful to take some of the questions I've previously responded to and package them into 15 to 20 minute episodes. So, here's our first one and I hope they're helpful and that you enjoy them.
My six [00:02:00] year old PDA er. Is extremely fixated on my husband and wants his attention at all times that he is not working. We unschool and I am with him for most of the daytime hours. I understand he's wanting his dad's attention. Yet he's extremely controlling of my partner in a way that any human would find difficult.
If my partner wants to go for a walk, even if he has invited my PDA along, but with no expectations, he'll often scream, the child will often scream, I'm not going and neither are you! He'll stand in the doorway and physically try to block him from leaving the house. When he wants something, like to play a game for the fifth time, he'll stand next to my partner and do little micro aggressing punches to try to get him to do what he wants.
Any insights, no matter how much my partner gives attention, it's not enough. This is very normal for [00:03:00] PDA kids. So this falls into when we talk about PDA as It's having a, I think it's described as social obsessions or something like that. I used to know the way that the criteria is worded and I think I've just moved further and further away from that pathologizing language, so forgive me for not remembering it off the top of my head.
So when we're talking about our children, our PDA children, they will develop a preference for one person. Not all children will do this, not all PDAs will do this, but our children will often develop a preference for one person and that preference will be so important to what they consider their survival, their very survival.
This doesn't mean that mum is not a safe person, it doesn't mean [00:04:00] that at all, it might just be that because we're with mum all day. We really need dad and when dad walks in the door, that's where we're at. With PDA come the intrusive thoughts for children. The worse the anxiety or the more chronic the anxiety and particularly in childhood, this can be a very common occurrence.
Things like intrusive thoughts can come up where our children will think if our parent leaves the room, that means we're never going to see them again. Or if our parent leaves the room, that means they're going to die. Um, very extensive, intense, It's anxiety fed thinking, and it can feel like we are going to die if we don't get access to the person or the thing that we want.
Yes, this is a very normal PDA experience for young children. That's my [00:05:00] insight. Having advice around it is tricky because all of our families are so different. I guess what we would be going for here is decreasing the threat response, decreasing the anxiety. Now this is very complex. We cannot take a particular behavior in a PDA child or one particular situation and work on amending that situation.
When we're working with a PDA er, our focus is always going to have to be Decreasing the anxiety first in order to de escalate that threat response and an ongoing, lifelong, evolving approach. So when I hear people talking about PDA friendly parenting approaches, I think that what is most helpful is [00:06:00] parenting the individual that is in front of us because the minute we start to compare our parenting approaches with other people, even other PDA families, we lead ourselves into despair because we might be doing things differently and our interpretation might be that we're doing it wrong.
Some families will be able to say to a child in that situation, sorry, sweetheart, I know it's upsetting, but dad needs time and space. And dad might have to leave the house on his own, and the child may be escalated and upset and have a meltdown and then be okay. Another child in that situation may self harm or harm others.
It's really down to the individual child and the family and what we can and can't manage. If we have other children as an example, then that's a whole other thing. We need to be [00:07:00] managing them as well. When we're talking about working with the child to de escalate that threat response and bring the anxiety down.
This is a whole family approach. It's not just us giving the responsibility to the child. This is why we talk about low to no demand. periods in our lives and in our family homes. This is why we really hone in on our child's current level of capacity before we start reducing or introducing any kind of approaches.
Even starting to implement a no demand lifestyle can and will often exacerbate behavior and anxiety in our children because it's change. And sometimes we forget that at the heart of PDA is autism. And autistic folks, we often really struggle with any kind of change. So anything [00:08:00] we do in our families is going to be a very individual thing.
Over time, As we build capacity in our children, we can then start saying no. We really can tell PDAs, I know this is really upsetting for you, and here's the boundary. Sometimes we talk about regulation and co regulation, which is really important, but we get confused often about what regulation means.
Regulation is not the child being calm all the time. It's not the child being able to hear no and being completely okay with it. Regulation is the way that we respond to our environment in ways that are right and appropriate for us. So my eight year old will often want something like a fifth round of the [00:09:00] game.
And I will say Oh, sweetheart, that's enough for me. I'm, I really can't do any more because my brain's burning out. I'm tired. And I'm starting to feel really grumpy too. And I don't want you to experience the unkind. version of mum. Now I can say that to my child today, and their response is likely to be something along the lines of, Oh, fine.
And they'll walk off and they'll find something else to do. That's where they're at today in terms of regulation. Two years ago, it would have been. You never spend time with me. You don't love me. You love my sisters more than me. It's so unfair. And they probably would have thrown something a year before that.
They would have put a hole in the wall a year before that. I would not have been able. to have [00:10:00] that conversation with them. It takes time to build that tolerance in our children, and we do that through repetition, familiarity, and consistency. Because what we're trying to communicate to the PDA brain is safety.
So, to begin with, if my child wanted a fifth round of the game, I would find creative ways of remedying this. So I might say, Okay, No problem, we can definitely have a fifth round. Mum's going to organise tummies are nice and full, and then we can play another round of the game. I, the adult, need to feel out what I am comfortable with sitting with.
So, it's going to be uncomfortable, my child might have a meltdown. What will that look like? Are they going to be okay? Is everyone going to be safe? Because the realistic nature of our families is that our [00:11:00] children are neurodivergent and they have big feelings. bigger than their little bodies can contain.
And until they grow and develop, those coping skills are not going to be there. So it's going to be up to us to teach them about regulation. Now, back to regulation for a moment, looking in, we might see a child rolling around on the floor and screaming and yelling and think that's inappropriate and that is not regulation.
But we might be wrong about that. If that child is rolling around on the floor and screaming and yelling and then they're okay and they're able to hop up and get on with things. That may be how they regulate for now and that can be okay. We don't set goals like our child will never have a meltdown because that is completely [00:12:00] unrealistic for an autistic person or our child will be calm all the time.
No human being is calm all the time. I think sometimes we have to have a really realistic look at what regulation is, because everything I read that people are writing about co regulation and regulation is around calm. It's around balance and calm all the time, and that's not realistic for anybody.
Wanting dad all the time? That's okay. That's absolutely okay. It sounds like dad is their person right now. And dad is going to need time to himself and dad is probably taking on the task of finding creative ways to communicate and work with. our little PDA er. And this can take us time too. Intuitive connection and communicating, finding a way to communicate to the little PDA er's [00:13:00] brain that if dad goes for a walk, he will return and everything will be okay.
It might be that there's something special that we do on our walk. It might be that there is something special that We do with mum when dad goes for a walk. And this might not work either. Every family is going to be different. I was recently diagnosed autistic in my 40s. Congratulations. My oldest teenager of three is autistic.
My experience of autism seems to be very different to my son's. What are your thoughts on being careful when identifying as autistic? Not to assume that others who are autistic must be having a similar experience. I worry about the pitfalls of assuming likeness as we are all different. even being autistic.
I agree. [00:14:00] Absolutely. This is why the diagnostic criteria and the DSM are so problematic because when they were formulated, they were based on young white males and didn't take into account the culture of being socialized as fems. as little girls, the way that we were socialized to show up in the world, to be people pleasing, and other gender stereotypes.
It's, it's really important. I think there are definitely similarities in autistic identity and culture, but we are all different. I'm interested in, as time goes by, whether you might start to identify that your other children might be autistic as well. This is a really common experience. The more we learn about autism, the more we start to see it in other [00:15:00] family members as well.
And there are very different expressions of autism based on our masking. So I think this is really important. There are ongoing conversations in our community about female autism and male autism and I think this is a problematic concept in itself because it almost reinforces that women and men experience autism differently.
All people experience autism differently. However, the way that we mask is something that takes years and years, the rest of our lives, to really understand and undo. And again, gender stereotypes play a huge part in how we develop our masks. Being a young girl, and having very clear messaging from society around how [00:16:00] women are supposed to behave.
And I remember being a teenager and studying Dolly Magazine. I don't know whether anybody remembers Dolly Magazine in Australia, and then Girlfriend Magazine. And as I got older, it turned into Cosmo Magazine and Clio Magazine, so that I could understand how my peers, other girls, thought and felt. I didn't know that's what I was doing at the time, but I was looking for rules.
and very distinct descriptions about how to be, how to be a girl person in the world. Because I didn't intuitively know, because the way that I wanted to be in the world was so different to how my peers were. I shaped my mask based on looking in magazines at how I should style my hair, what clothes I should choose, and how I should do my makeup, how I should [00:17:00] walk, the tone of my voice.
everything, everything. Cultures, where we come from in the world, our race, our family culture, what we do for a living. Being a teacher meant that my mask was also formulated around what I did for a living, how I should show up in the world. My autistic brain was always looking for very clear definitions and rules around identity and how I should behave and that's how I formulated my mask.
So now as an adult, Now I know I don't have female autism, I don't have a type of autism that's different to other people, I just show up in a very particular way because of societal ABA, being trained inadvertently to be the way I am [00:18:00] and masking autism. So yes, absolutely we are all different, absolutely.
And then there are culturing. conditions and neurotypes as well. So some of us will be autistic and ADHD and not know. It wasn't until I started medication for my anxiety that my ADHD became clearer. And then I just went, how did we miss this? It should have been the first thing that we picked up about me.
And then there's PDA of course, which will again be another experience of autism. There will be co occurring autoimmune conditions, and fibromyalgia, endometriosis, premenstrual dysphoric disorder. So many of the co occurring conditions. This is why we say it's not just a neurotype, it's a neurobiology.[00:19:00]