You are not alone
[00:00:00] I've never been great at BS. I've never been great at being on the receiving end of it. I've never been great with engaging with it. And uh, so I like to speak as honestly and transparently as possible. And I, I credit my PDA nature for that. It's not always received well. I don't always like it. But today I'm talking about the reality for so many of our families when we are raising PDA children or when we're PDA ourselves.
So many people don't know our stories and they don't understand the risk that comes with speaking publicly about our stories. And so today I'm going to share a little bit about that. [00:01:00] about parts of my own story. And I hope that it is helpful because the only reason I share so publicly and so vulnerably is because I feel a responsibility to do so.
I don't want families to think that they are alone or that their experience is not matched elsewhere in the world. Often it's a case of not having the safety to find one another because we're not hearing stories like ours. So I hope again that today is helpful and you get something out of this episode.
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. [00:02:00] I have ADHD and I am a PDA autistic. If you're not sure what PDA is, it stands for pathological demand avoidance.
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.
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.
[00:03:00] Sovereignty was never ceded. This country always was and always will be Aboriginal land.
It is really lovely to be here. I wanted to talk about something that people ask all the time about PDA, and that is what are the right therapies, who are the right professionals, and what are the right approaches when raising our PDA children. How do we get them back to school? I think the way that we are coming at PDA is often thwarted because we're looking at PDA as though it's a choice.
And even in the way that many professionals approach therapy with our PDAs, whether we're children or adults or youth, is from a [00:04:00] framework that assumes The ability to override anxiety, or the threat response, that is, it's just not true. So, there's a, it's a very complex neurobiology, complex. Because it is, it fluctuates from one moment to the next.
In one moment we may be able to complete a task or do something, and then in the next moment we may not be able to. Because we live in a society that operates from a foundation of behaviorism, the assumption that everything about a person's behavior speaks about where they're at is very problematic, because it's not true either.
If we can accept that there are varying [00:05:00] cultures around the world and customs and rituals, it blows my mind that we cannot accept that A particular behavior, whilst looking the same for two different people, can come from very different places and mean very different things. This is a really important aspect to acknowledge about humans.
With PDA, people will often ask, so what do I need to do to get my child back to school? Or what do I need to do to get my child to use manners? Or what do I need to do so that my child will clean up after themselves? And my response to that is We let those things go because if our children are suspended in a trauma response and if we are having challenges to the point where they're unable to do those basic things, then they are probably suspended in a trauma response.
Now, when I talk about [00:06:00] trauma, people often think that what I'm saying is. We've traumatized our children or something has happened, a significant event, but it's not that way. PDA is largely a nervous system disability. And so it's got nothing to do with thinking. It is about the nervous system. So our baseline is to have a nervous system difference.
And what that can look like is a million different things. It's very similar to a person who has experienced significant trauma, however, but there are other aspects to being a PDA that people who have experienced trauma do not have. But if we think about a person who has experienced significant trauma, let's focus on that for a moment.
Would our approach. To a person who is traumatized. Let's let go of autism, PDA, all of that for a moment and just think about a child in [00:07:00] our care who has experienced trauma for whatever reason. Now, imagine that they experienced trauma because they wanted to go swimming in this beautiful lake. The water was shining and all of their friends were already in the water and swimming and they wanted to jump in with them and they did.
But they couldn't swim in the same way as their friends. I'm making this up as I go along. So I hope this works out. Imagine they jump in and they're unable to swim in the same way that their friends do. And over time, a current. begins to pick up in this lake. And it becomes more and more challenging for the PDAR to swim, but their friends seem to be swimming just fine, and they're okay.
So everybody's looking at us, the PDAR, swimming in this lake, and they are [00:08:00] saying, It's easy. Just do it this way. And they're showing us, the PDA er, or the child with the trauma. We can all swim against the tide. Why can't you? What's happening? And the adults are on the sidelines, and they're saying, Christy, watch your friends.
Calm down. Just calm down for a moment. Slow down your breathing. Stop panicking. You're drowning, by the way, because you can't swim like your friends. And you're being dragged away by the current. So you're panicking. A very rational response. But the adults on the sidelines, and the adults are the people we look to as children, they're on the sidelines and they're saying, watch what your friends are doing.
They're okay, so watch the people that are, that are doing it well or properly. And so while we're trying to save our own life, and we don't have any help there, where for our lives, treading this [00:09:00] water while we're being carried out by the current. We're trying to pay attention to how everybody else is doing it, but it's really hard to, to see because their limbs are under the water and we can't see that.
We can see them being okay from the surface level up, but we can't see their body under the water and it gets harder and harder and harder. And people are still on the sidelines. And we're tired. We're getting really tired. And there's no life raft. There's no floaties. There's no life jacket. But there is the expectation that while we're in the water, we'll learn to swim like our friends.
And after a while, we don't have it in us anymore. Our muscles are fatigued, our bodies are tired, our minds are exhausted, and there's no safety because nobody is saying maybe, just maybe, you swim a different way. Maybe there's something we can do to help you. Maybe we can offer some form [00:10:00] of floating device or throw out a rope.
Or jump in with you, nobody's doing that. Sometimes they might say, we'll jump in with you for five minutes and then you'll be fine. So they jump in and we panic because we know they're only with us for five minutes. So we can't come down. We can't calm our breathing. We can't suddenly swim like our friends because now our anxiety and our panic is exacerbated even more so because we know we only have this support for five minutes.
And then we're alone again and nobody believes us about how much we're struggling because they can see that we're able bodied and they think that we should be able to swim like everybody else. So in the end we let go. We float with the current. And then everybody looks to our parents and their focus shifts from us floating down the current.
[00:11:00] Everybody turns and looks at our parents and our carers and says, Did you not give them swimming lessons? What, what have you been doing? Why, why didn't you teach your children to swim like the other children? Okay, well, it's important that you do that now. We can't pull a child who's now exhausted, incapacitated, completely traumatized, feels abandoned, is so burnt out because they've been working so hard to be something that they're not, and their parents now are also burnt out and exhausted because people are reporting them and criticizing them and judging them.
I know this is a really long and drawn out analogy. As adults, we're so deeply conditioned to assume the most unbelievable thing about being a human, and that is that we either [00:12:00] are all the same and have the same capacity and the same abilities, or we should be. Even when we talk about disability, even when we talk about lower capacity, There is still an underwriting determination from so many systems that we will have our children on par with their non neurodivergent peers.
Even after many of our families have been on waitlists for years, spent thousands of dollars to go through an assessment that is often very traumatic, to be told, yes, Your child does have a disability, they are autistic, or they are demand avoidant autistic. And then we ignore that information and we [00:13:00] say, now put them in school and expect them to behave and live and breathe as though they're not.
Now this isn't me saying that we shouldn't. Our children's right to an education or our children's right. to a particular quality of life. We all have a right to that, but there are many pathways to the same destination. And that's what, that's what being a human is about. So sometimes when I come into contact with families who have a child who is at the point where they are, they've let go and they're floating with the current.
Their parents are under incredible pressure from systems and people and being almost harassed and bullied into still trying to get their child to swim after actually witnessing the process of the child not being able to swim. When you think [00:14:00] about this situation, we know what the outcome could potentially be, don't we?
For a child who cannot swim in the water. We don't think about these things when we are raising PDAs. When we experience our children being in crisis, we are still often pushed to override their neurobiology. If somebody's nervous system is incredibly dysregulated, and they are suspended in a trauma response, there is no framework in the world There is no therapy in the world at that time that is going to be taken in by them.
For many reasons, one of them is because when our nervous system is escalated to that point, We are working from primitive responses, survival. We are in survival mode. We cannot access our [00:15:00] prefrontal cortex, the part of the brain that is responsible for impulse control, for calm and rational thinking, decision making, and regulation of emotions and behavior.
Now that, right there, That part of our brain, the prefrontal cortex, if it is offline, we're going to see all kinds of physical expressions of that. But we just simplify it and call it poor behavior. And we focus on those behaviors as being either acceptable or unacceptable, good or bad. And the focus in the way that we approach it is often punitive.
Would we take a child who has experienced trauma from a significant event, like And punish them for how that is communicated. Would we punish a child who is acting out after they have been in a situation where they've been abused? [00:16:00] No, we would not. Do we take, do we take PDA children who experience a very similar process?
And expect them to do better, be better, behave differently, and hold them responsible for that process. And then bully and harass their parents and carers when those expectations we have of them are completely unrealistic. Yes, we do. We do. And it destroys families, and it contributes to intergenerational trauma, and that stuff already exists.
A child who is suspended in that state from their stress response, given goals to return to school, or basically to jump back in the same lake that they started in. Can you imagine? Now, I understand. And completely respect and acknowledge that not every family [00:17:00] has the ability to have their children at home from school.
I absolutely understand that. And we are not all the same. Our families are different. Our children are different. We are all unique, individual human beings. All of our situations are different and we would approach each one individually. But when we ask about what is the right therapy to set goals for a PDAR?
Or what is the right, who is the right professional? Or what is the book I should read? Even for what are considered typical families, I feel like this is a complete bum steer. Because again, we're overlooking individuality. We're overlooking the fact that we are different and we have been conditioned to adhere to this myth.
That everybody should live and breathe [00:18:00] and do and be the same way, and if they don't they are disordered, or dysfunctional, or something is wrong with them. And it's not true. It is not true. So, what do we do when our children are floating with the current? Our children are getting it right. Our children are getting it right.
They are following the wisdom of their neurobiology. And they are letting go. And they are floating. But they also don't have a choice. The conscious brain, what, what PDAs want, and what they think, is completely separate from their nervous system response to their environment. So, we know this because PDA is not exclusive to being told what to do and not being able to do it.
And for the [00:19:00] longest time, we have had our children diagnosed with things like Oppositional Defiant Disorder. If we really pay attention and hear those words, oppositional means doing, being the opposite. Of something that's expected. But what is the thing that's expected? That's not clearly defined. And it's unspoken, largely.
Defiance? I mean, these are children. These are children. The more we learn about PDA, the more many of our families come to see that. It may be PDA that has been missed. And even the language around PDA, pathological demand avoidance. It's so much more than demand avoidance. It is so much more than this. It is not a disordered way [00:20:00] of being in the world.
It's not a great way to be. I mean, there are times where I will say, and my children will say, sometimes being a PDA sucks. Because I want to be able to do this thing for myself and I can't do it. And that is true. We are just as impacted, if not actually definitely more, than the people on the outside who have expectations of us.
When you are a child with a PDA neurobiology, when you are any child, you do not have the insight and the understanding about your nervous system to be able to communicate to people what is happening because we don't understand it ourselves. There were so many moments for me as a young person where I would be in a situation and I would be responding to my nervous system.
So I would say mean things to other children or I would be [00:21:00] physically aggressive. And that stuff is not okay. And I know that it's not okay. And I knew then it wasn't okay. And I self loathed. Because my reality was I could not pull myself out. of that state. I couldn't just stop. I couldn't not target my siblings.
I hated myself as a young person for those things. And I knew, I knew the trauma it caused around me. I knew that stuff. If I could have stopped it, I would. And I believe that of all human beings. I believe that of children especially. We do better, not when we can, if we can. And PDA ers, who are burnt out, who are floating with the tide.
Because they can't swim. That is not the time to immerse them in [00:22:00] therapies. But we're encouraged to do that. We're encouraged to find solutions immediately. Child won't go to school. End of the world. End of the world. We have to. We have to fix this. And we very seldom look deeper than what they're doing.
What they're doing with their bodies, their time. What they're eating. The first things that happen when a child is experiencing trauma or burnout is that their basic needs will change. They're eating, they're sleeping, they're toileting. Their relationships. All of those things will change. Their sensory systems.
When under incredible stress, I cannot hear properly. I cannot see properly. And this has been all of my life. My, my vision would actually blur out if I was under a lot of stress. The ability to retain information when [00:23:00] your threat response is activated consistently is Very low to non existent. The ability to care for ourselves, to get out of bed, to get dressed.
All of these things are perfectly rational responses to stress for a person who is born with a highly sensitive nervous system. These are rational responses. These are not disordered responses. If we view these behaviours and these outcomes via a neuro normative lens, We will think so. We will think this is a disorder.
And that's an incredible insult. It's incredibly dehumanizing and demeaning. For a neurodivergent person, these are rational responses. And this is why it is so important to know the difference between identity, culture, and disorder. Because they are very different things. A cat [00:24:00] doesn't look at a dog and think that it's a disordered cat.
We are the only species. that does not cohabitate in diversity with acceptance. When our children are in that state, they need rest. And sometimes it's really distressing to see what that looks like, because what it will look like is a young person who may have been filled with joy, excitement. They may have had big dreams and hopes and goals.
And they may now be unable to leave their room. They may need to be in a room in the darkness. And that is a normal response. to trauma. We think about, again, a child with a PDA neurobiology. Often there are very little adults or [00:25:00] anchors available to them that aren't also either Not believing in our experience or experiencing their own nervous system dysregulation, as in parents and carers.
Our parents and carers are often under an incredible amount of pressure from extended family and friends, and there's loss and grief there. If only society knew a little more about our stories. I wanted to show up today because If you're listening and you feel completely isolated and you feel like nobody believes you, your experience as a parent or an individual, or you are still trying to fight the reality of where your child is at, I just really want you to know that, first of all, you're not alone.
You're not making it up. Your child is telling you the truth. If your child is sleeping all day and gaming all night, that is a coping mechanism. [00:26:00] That is. often an inherent neurobiological response. to recovering from trauma and burnout. A PDA brain needs safety before anything else. We are always looking for safety, not consciously.
Neurobiologically, our brain, our nervous system, our body, they all work together to find safety. And sometimes what we've been shown is safety is a little thwarted. If we've been put through a system where we're expected to overcome or override who we are, where we've had to mask and adapt and fawn, where we've had to fight, then our navigation, our compass on what is safe can become thwarted.
And we may find ourselves in really unhealthy relationships. And this is because we often learn that we have to accept whatever is on offer. If you're parenting a PDAer and they're [00:27:00] unable to leave their room, I know you might be fearing the outcome of their future. Because they may not be exercising, they may not be eating well, they may not be drinking enough, they may not be taking their medication.
It might have been three months since their last shower. They may not be able to use the toilet and they may be asking you to support them to do that. I want to relieve some of the panic and fear and shame that you might be experiencing in isolation. And I want to tell you that it's okay to find out of the box Responses to our children's needs during that time because there may not be anything available that is suitable to support them, which places a huge amount of responsibility on [00:28:00] families who are often still carrying trauma from their own upbringing.
There are often partnerships. Where one parent will be the preferred parent. This is very normal for PDAs. Where one parent is more responsive and willing to let things go and learn more, they will become the preferred parent. Sometimes this results, not sometimes, very often, this results in the other parent or the partner increasing their level of demand on the child.
Maybe not believing so much in the child's experience. Maybe insinuating or outright saying that the other parent is enabling the PDA child's behavior. And I want you to know that none of that is true. None of it's true. It's really important to look at those situations and to remember that [00:29:00] PDA is a form of neurodivergence.
It is a naturally occurring variation of human and it doesn't just fall out of the tree or the sky or just show up in our families. It comes from somewhere. And if there is another person or people in our families that are really struggling to get on board with believing in our experience or our child's experience, that may be a form of avoidance.
And if we are following that parent or our partners around and saying, but here's the evidence, read this thing, come to this meeting, listen to this talk, that will potentially exacerbate their avoidance. If you find that that's what's happening, it may be time to think about whether that adult is also a PDA er.
When we're in crisis, prioritizing [00:30:00] Safety should always be the foundation of where we're at. That's really hard for many of our families because the way that many of our families are misunderstood and confused for being dysfunctional neuro normative families rather than living within neurodivergent culture, which looks different.
People call systems and CPS and mandatory report. Many of our families. Because from the outside, they see a parent who is responsive to the needs of their child and they make the assumption that the parent is the problem. And so we stop seeking support, or we're afraid to seek support. And if you have other intersectional identities, such as being a First Nation person or being Indigenous, or belonging to the LGBTQIA [00:31:00] plus community, or being any other form of intersectionality, then the risk of that happening is even larger.
This is a community of families. Some of us are thriving and some of us are surviving. And in our families, we shift between the two. When we view ourselves through a neuro normative lens, we may see ourselves as failing our children, or as having caused our children's struggles. When we understand And reframe that experience and come to see that we are not neuro normative people.
We were not born that way, it is not our way, we were never supposed to live that way. The word divergent in itself means to carve new pathways. Then we get to see that we are responsive caregivers. in a situation where we are under resourced and unsupported. And [00:32:00] sometimes there are not solutions that will be supported in a safe way.
There really aren't any experts on PDA. There is community and there are people sharing their experiences. And our generation is on the crux of developing resources and communities for our families and our PDA children in adulthood, should they wish to become parents, they will have access to more resources.
than we do. For many of our families, there's nothing. There's nothing. And when we go looking for those resources, sometimes we come up against the same information again. You can't do this. You can't do that. This is not okay. This is enabling. And sometimes we believe it, and we carry that, and we internalize that as adults.
And many of us come into parenting PDAs with a history of masking [00:33:00] for survival, fawning for survival, fighting for survival. And a young person showing up in our lives that cannot change in that moment can often feel like an incredible threat that may undo everything the adult has. worked hard for, and there may be trauma there too.
There are so many complexities around raising our children and being PDA, and nobody is exempt from them. There are professionals in this community that do not have solutions or support or resources for raising their children in crisis. And I say this because It's important that we remember we are all human.
It doesn't matter how much money we have, what neighborhood we grew up in, what qualifications we have. We're human. [00:34:00] Nobody is an expert on neurodivergence. We are a community and people are suffering. People are suffering and a lot of that suffering is because of the systems we have to live within. So please know that there is no perfect therapy for a PDAR.
There is no perfect solution because we're humans. There are no generic frameworks that will work for every child. There is trial and error, and there is intuition. There is that direct energetic connection between a parent and child that is often so worn down and frayed and hanging on by a thread because of those systems, or because of the intergenerational trauma.
And we can recover. [00:35:00] We can, but not everybody has that privilege. And I know that not everybody has capacity to be able to engage in trial and error with their children, or not everybody does feel connected enough or connected at all. And I want to say that that's okay. We do so much harm when we judge others.
And I'm, I'm going to finish up by sharing something very vulnerable, but very real in my own family. For the last, I don't know, however long, uh, I've been quite public recently about being, being unwell and, and I have been significantly unwell. And my, my community is what has sustained me and being a single [00:36:00] parent.
Is a challenge and raising children who cope by not being able to communicate in ways that other people do for whatever reason and using their bodies to communicate is a huge challenge. And in my family, I've had to face that I'm no longer well enough to meet the needs of one of my children who requires 24 7 care.
And so we have split our children between two homes. But we still are a family, and we still spend time with one another, and we still share an incredible amount of love. But it's been hard. And so, if you are a family that faces what feels like an impossible situation, and you look to people on the internet, or you read a book and you think, well they have the answers and they're doing it right.[00:37:00]
They can't have all the answers. Because they are not you and they are not raising your children. Out of the box solutions for out of the box situations. That's what we have and that's what we work with for now and nothing means that it's forever and sometimes it's incredibly painful. I thank whatever the universe that I'm PDA and Alexa Thymic because I'm not ready to feel feelings at this point in time.
But I have experienced many people being angry with me and disappointed and upset and thinking that I don't care about my community when I'm unable to show up. And that hasn't been the case at all. And nobody wants to get on the internet and bear their vulnerabilities. But I feel a responsibility too.
Because I have a level of privilege that allows me to do that. [00:38:00] Many families don't because they would be at risk. Our lives are hard, and they are joyful, and they shift and change from moment to moment. You are not doing it wrong. Letting go of the idea of right and wrong is really important, but there is no one solution for everybody.
And if you are a professional looking to learn more about PDA in order to support families, I really want to urge you to come into space with us. Come into, not as in outer space, although that could be pretty cool, come into our communities and observe our discussions. Be curious and open minded and mindful of the fact that any degree, any qualification that we have.
It's largely going to be a [00:39:00] colonized perspective, capitalist, from a capitalist foundation. And I'll finish there, but please hear our stories and please pay attention. Nobody comes into raising children saying, I'm just going to skip having boundaries. I had this conversation in, in our closed community this morning.
No parents come into parenting with the idea that they just won't have boundaries. And they won't praise their children. Let's just skip all of that, and let our child sleep all day and game all night. Nobody does that. Come on. Nobody does that. We need to be more curious about how and why people are where they are at.
They didn't go there by choice. They're not there by choice. In the end, sometimes we are, because we find it's more peaceful than anything that came before it. This is survival. And scrutinizing, obliterating, analyzing someone's [00:40:00] circumstances through a biased lens that is completely disconnected from our own human experience doesn't help anybody.
It doesn't. Come into our communities and learn about neurodivergence from lived experience. Put away the textbooks. and learn about us. How, how deeply we think and feel and how much we love our children and how much we've been failed by systems. Yeah. And I know this has been quite heavy and I didn't plan this, But we don't have the heavy conversations publicly because we're not safe to, and we need to.
I want you all to know you are not alone, even when you feel you are. There are thousands and thousands of families just like yours out there, too afraid to say that they're one of those families. But we are here, and we exist, and we're doing it. We're doing it rough. Some of us are doing it really well, but [00:41:00] that's because we've done it rough.
for years beforehand. When our children are floating with the tide and everyone else is berating them for not being able to swim, there's only so long you can stand on the sidelines with the people that are telling us That the important thing is to teach them to swim. Jump in the water with them and float.
Hold their hand and float with them. That's the best place to start. And I really sincerely mean this. We are all doing the very best we can with what we have. And what we know. And many of us don't know much. And don't have much. We have to stick together. And stop fighting. And stop judging. There will be families who can put their children in school.
That doesn't mean that you're failing because your child is unable to go to school. We're humans, we're different, we have different experiences, and that's okay. Sending so much love and care to everybody, [00:42:00] and I hope you have a wonderful day of self compassion. Self compassion. Thanks for sticking with me everyone.