The Empowered Parent with Dana Baltutis

Episode 32: Kristy Forbes (Autism and Neurodiversity Specialist) - Creating An Inclusive World for Neurodivergent Children

• Dana Baltutis • Season 1 • Episode 32

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Ever wondered how shifting from a medicalized view of neurodiversity to a more human-centered understanding could transform your parenting journey? Australian autism and neurodiversity specialist Kristy Forbes joins us to unravel this profound shift. Kristy's personal journey of being diagnosed with autism and ADHD at 33, thanks to her non-speaking daughter, is both touching and enlightening. Hear how she navigated the initial grief and relief, and how acknowledging her family's neurodivergence has been a transformative process.


danabaltutis.com, mytherapyhouse.com.au, https://mytherapyhouse.com.au/your-childs-therapy-journey/ https://www.danabaltutis.com/services

Speaker 1:

Hi Christy Forbes, welcome to the Empowered Parent podcast. I'm thrilled to have you on the show today because the work you do here in Australia and internationally for and with neurodivergent individuals and families is incredible and so important. You are an Australian autism and neurodiversity support specialist. You have degrees in political and social sciences, education with disengagement specialisation, literature, film and art. You have a special interest in PDA-related trauma and burnout. You're also the founder and director of In Tune Pathways. You are formally identified, or you formally identify, as being autistic and ADHDer and have a PDA or, for our listeners, pathological demand avoidance expression of autism. As well as that, christy, you are a parent of four neurodivergent children, all with varying, unique neurodivergent experience and expression, including non-speaking experiencing, apraxia, dyspraxia, tourette's and PDA. Wow, what an eclectic mix and wealth of knowledge you have. So, before we delve into your programs and how you support families and individuals, I wonder, christy, whether you could share with us about your journey and how you came to be who you are today.

Speaker 2:

I just want to say the way you just introduced me was so. I've never experienced anything like that. You, the way you used the word you throughout that was like a gift of delivering information to me about myself that cut out the imposter syndrome. It's like you took my experience and delivered it in a way that was so beautifully empowering and reminding me. That was really moving. Yeah, you are christy, you are.

Speaker 1:

You are moving in our community, you're moving in our society, and we need people like yourself, and that's why I'm really excited that you're here today oh, thank you, I'm so excited to be here.

Speaker 2:

My journey that brought me to who I am now. Gosh, gosh, I think I spent 33 years thinking I was made wrong, that there was something not right, that I was a second class or second rate version of a neurotypical whatever that is, and I think, because I had grown up in poverty with a single parent, lots of, lots of intergenerational characteristics of trauma. I always put it down to that oh, it's just trauma, not just trauma, but it's solely trauma. And if I just keep working at myself, one day I'll be a normal person, one day I'll be a typical person and I'll be better and I'll do better and I'll be a better parent and a better wife and a better human. And then I had this gorgeous baby, my third baby, who is 13 now and non-speaking, and I don't know how, but I knew when she was born that there was something very special and different about her presence and our connection, and it was so. She taught me so much, but she led me to the understanding that, in fact, our entire family is autistic. We're all autistic.

Speaker 2:

And so, at 33, I sat in the office of a psychologist who said you are autistic, christy, and I cried and she said why the tears? And I said well, it's a mixture of grief and relief. Grief that I've spent my entire life up until that point fighting so hard in the pursuit of being someone I was never supposed to be, and relief that I didn't have to do that anymore and instead I could explore the identity and culture that came with being an autistic person for me and what that looked like for me, and whether something was dysfunctional or a different culture, a different way of being in the world. And so, from there moving forward, things changed and I guess, along the way, we're learning for all of our lives, aren't we so?

Speaker 1:

did you find that you could put everything in its place once you had that chat with the psychologist, Did everything sort of fall into place? You know your past life visions or images.

Speaker 2:

I wouldn't say the psychologist got me there, though, because I think there are wonderful, wonderful professionals and service providers, but I worked in the field and I didn't know any better.

Speaker 2:

I was supporting families with autistic children and I didn't realize I was autistic, or my own children were, so I think that was really reflective of the professional development on offer and the training that we were having.

Speaker 2:

I was a qualified educator as well, so what I thought I knew about neurodivergence wasn't hitting the mark, because I was looking at a medical, pathology perspective rather than the human perspective, and so it took a lot and I think it continues to take a lot for people to let go of everything we think we know in order to be open to a new experience, and a large part of that, for me, has been really challenging my perceptions of reality around who human beings are supposed to be, and being a woman, identifying as a woman and having that social and cultural conditioning to be a caretaker and to push through burnout and to be the person that resources everyone else in the family and does all the learning and does all the everything undoing that, undoing all the roles that I'd taken on as a high-masking autistic person picking up along the way in childhood.

Speaker 2:

Well, okay, I'm a female, this is how I'm supposed to present and speak, and this is what I should be interested in and this is how I should dress. That's just one identity, that's just one part of who I am. So, really, looking at all the parts of me, even the parts I rejected and resisted and going, but really what does it mean for me and what does it feel like for me? And that can be really challenging and scary in the world we live in. That continues to reinforce stereotypes and behaviorism, I guess. So yeah, things made sense, but it's a continual path.

Speaker 1:

And I've worked with so many parents with their children and you know they've come from the medical model. So you know, oh my goodness, my child's autistic. And then there's grief, and then there's suffering, and then there's trying to put that child into a position where they're going to be quote, unquote, normal, whatever. That is, as you say, neurotypical. Um, what could you?

Speaker 1:

and often I see some of the parents that I've worked with, I I think they're neurodivergent themselves, but they don't realise they're neurodivergent, right, because it's almost like a blind spot and you know I've got this thing about perception is projection. It keeps coming back in my mind over and over and it's almost like they're trying to. Maybe they felt like they didn't belong in their childhood. Maybe they felt like they had challenges in their childhood.

Speaker 1:

They don't want their child to go through it and so they're trying to normalize their child so their child doesn't have, you know, they don't have to suffer, as they've've told me, the way they have. Could you talk to that please, and what?

Speaker 2:

would you say Christy?

Speaker 1:

to those parents.

Speaker 2:

I love that human model rather than the medical model, love it. What you've just outlined is I feel like this is the heart of where I work from with families, because we still think that neurodivergence is a medical disorder. And how could we not think that If you're exposed to the world, then that's the first narrative that we have access to when we don't know better or when we're new to a human experience, as in having children who are identified autistic or you know, being closer to autism or ADHD or whatever it is, and what you've just outlined about the parent experience is so important. This is grassroots, foundational work, because I know this might be controversial to say, but I'm not even sure that I've ever met a parent of an autistic child that was not autistic, because for me it's like saying, well, I have Scottish roots or I have brown hair, I'm autistic. And it's not just a child rocking in a corner, as Canna would have us believe, from 1943. We're learning more and more about this, but almost every parent of an autistic child that I've come into contact with will be questioning that about themselves. Yet it often begins with but I have trauma, but I have a background of trauma. My father was an alcoholic. My mother had maybe some diagnosis of a mental health condition and that information right there is culture that is unidentified neurodivergence, intergenerationally, alcoholism to cope with being different, misdiagnosis sometimes, and sometimes dual, or not knowing that we're autistic but being diagnosed with manic depression or whatever it is. Those are really important clues right there that we grew up during a time where no one had a clue what autism was. So how could we know whether we're autistic or not? And nobody is exempt from behaviorism. Nobody that lives in this world is exempt from feeling the pressure from society to show up in a certain way. We all mask to a degree, but when you're a parent of an autistic child, it is very common and very normal and very easy.

Speaker 2:

The first part of my journey was identifying things in my now 26-year-old who was my first child, and panicking about it and constantly trying to control her behavior. I didn't know she was autistic, but I thought, oh my God, they've learned things from me. I'm so messed up. They're anxious because I'm anxious. Oh, I can't let them. Don't talk like that, don't dress like that, don't look at people like that, constant comments about what's acceptable and what's not. Now, that's conditioning, that is trauma as well, and so I was projecting onto my children my own trauma, thinking I would protect them from being exposed to the things that I was as a vulnerable little girl and young woman. But in in turn, I harmed them more than I could have imagined anybody else would. And even that, that's not the worst thing in the world. We get to make amends and we get to recover and we get to reconnect and we get to hash that out together.

Speaker 2:

But that is so common as parents, when we don't know that, it's okay to extend to ourselves the same compassion that we extend to our children when we know they're autistic. Because if we're seeing things in our children that we relate to, like I remember I would look at my non-speaking daughter and think I know why she's lining those up. Oh, that's so satisfying watching her do that. I know why she's doing that. I can't explain it, but I just I get it.

Speaker 2:

You know there were so many things like that. Those are clues, they're all clues. So, yeah, I think it's really important for us to, slowly and gently and sometimes it's important to seek support for this be willing to visit the idea of going within and addressing the unseen and the unheard and the unknown, because we've been taught to pack it down, especially when we're parenting. Pack it down, put it aside aside. Put it away, show up for others, be in your carer role, and that will only get us so far before we burn out and then we won't have a choice about what we're unpacking, because it will spill over.

Speaker 1:

So yeah, and, as you're speaking, I'm reflecting on some of the parents that I've worked with, because I've worked in a very relationship based approach. That's where I work from and you know parents come in and they say I don't get play. Why? Why are we doing play? We need to be doing cards.

Speaker 1:

You and I think, yeah, that's there. You know, and and that's the other thing that I keep thinking of about the approaches that the approaches to support that parents choose for their children, it's not so much about their children, it's about them. So if we're looking at the behaviouralist approach I'm not going to have a debate on that today, yes or no but if we're looking at the behaviouralist approach, where it's very structured and the child may be struggling in that approach, but the parent, like you said, when the child's lining up the cars and saying, oh, that's so satisfying, that's so satisfying, that is very satisfying for the parent, because the parent feels like they understand it, they're in control. Their child may not be, it may not be helpful developmentally for their child, but for the parent it is, and often it's about calming the parent so they can be there and present for their child, don't you agree?

Speaker 2:

I would definitely disagree with whether it's developmentally appropriate. It is absolutely helpful for an autistic child to be allowed to play in a way that is appropriate for autistic culture. And this is one of the things we misunderstand we're not neurotypical, we're autistic. So we wouldn't take, say, a Japanese person and say, well, you're not speaking correctly because you're not speaking English. We wouldn't take someone who is English speaking and say, well, you're not speaking right because you're not speaking Japanese. What are you doing? Well, you're not eating Japanese food. What are you doing? And our response would be, well, I'm not Japanese, I'm Australian and I enjoy Japanese food and I'm happy for you to show me it and I'll definitely join you in that, but I'm not Japanese. Or they might say, well, I'm not Australian and this is my culture, which is important to my identity and normalizing who I am without shaming. So autistic play is appropriate and when we are.

Speaker 2:

We had a support worker who actually said to me one day Christy, I don't know how to do what you're asking me to do with one of my children, and I said I'm not asking you to do what you're asking me to do with one of my children. And I said I'm not asking you to do anything. Just spend time and hang out and game with them and go and have fun and access community. And she said all of the other families I work with have me playing games to practice turn-taking. They have me using flashcards for social skills taking. They have me using flashcards for social skills and I get it because I was doing that with my children for a really long time and I get it. We want to avoid pain for our children. We want them to have relationships and we want them to be happy and functional, whatever that means, and we're convinced that if they're autistic, they won't access those things. But I said to this girl, who is just incredible we're not typical people. Our social skills are fine.

Speaker 2:

There are studies, there is research that will show you that autistic people together we understand each other because this is our culture. This is how we talk. We info dump, we line things up, we talk at each other, we talk about trauma and we go deep. Quick Play is better than flashcards for a lot of us because it provides relational safety, helps me to know you and help me to trust you. It helps me to develop and hone my interpersonal skills and all the very things you want me to learn about I can access through play, but it was hard for her to undo that conditioning around. Well, I need to be putting flashcards in an autistic child's face to kind of get them to understand that this is how we greet people and no, they can't not say thank you. We have to get them doing that.

Speaker 2:

When we start out with an autistic child, and that's what we're doing from as early as we do, what is the message that we're giving them? Is it we love and accept you as you are, or is it we love and accept you conditionally and we're going to try and change the way you relate to the world and engage with the world? Now, I'm not saying that from a place of wanting to make people wrong, because I absolutely empathize and understand as a parent myself. But these ideas around having to do everything in life in such a structured way, having charts for everything if it's helpful, wonderful, but it's also just because the word autism is attached to a child, it also doesn't mean they have to have all these therapies and all these things in their lives because they're autistic. We're individual human beings and we're all different. So play is safe and it's great, but I'm going to be the first to put my hand up and say I don't love play as a parent.

Speaker 2:

I don't. I don't love play as a parent, so we do it in a way that I sneakily meet my needs as well.

Speaker 1:

Yeah, and play's not easy, Christy. Even for myself as a speech pathologist it's not easy. Myself as a speech pathologist it's not easy and I think that's why I found it really difficult to do traditional speech pathology, because I found it really hard to do, like I remember when I set up our practice. We had no tables at the practice, we had sensory motor. We had just fun, fun, fun things and people you know, the kids would call it the fun house, the play house, and parents would be like what are we doing here, what are you teaching them? And I said relationship, yes, longing.

Speaker 2:

Yeah.

Speaker 1:

Like letting their guard down.

Speaker 2:

Yeah.

Speaker 1:

Because they've had this whole day at school with their guard up, with their masking. They go out into community. They're with the grandparents, they've got to say thank you, they've got to say please, they've got to you know, and then, when they're in an environment where they can be themselves, that's what I want for these kids.

Speaker 2:

I can't resist that.

Speaker 1:

That's how that is their identity. But it's really about still, it's very early days, I think, in this, in this world of the way we are, because even the education system is not like that. So, yeah, we won't go there, but um. So I think it's just really important and that's why I want to interview people like yourself. You know, the message to parents is it's okay for your child to be who they are. It is essential for your child to be who they are because they are part of the beautiful tapestry that makes our world right. Mm-hmm.

Speaker 2:

But it's so much more than that too. It's like, um, you were saying our children, they're masking to be at everything. When you're autistic, everything has a cost energetically, physically, spiritually, mentally Everything has a cost. So when we choose to do things that bring us joy, we need recovery from that. And what we're not talking to families about is autistic burnout, co-occurring inflammatory-induced conditions from prolonged chronic stress that's showing up in more and more autistic children Cannot go to school because of burnout, cannot access community because of chronic anxiety, and I think what we're missing here is letting families know being autistic means we have a completely different neurobiology. We have a different nervous system, so whilst we can do those things, the disability is fluctuating. So in one moment we might be fine to go to school or go out in the community or go to a supermarket or be practicing social skills or whatever it is, and then we might be in bed for three days after because we need recovery time. And the more we push and push and push the way that we're often encouraged to in therapy, therapeutic approaches in any way, we might actually be fast-tracking our children into burnout.

Speaker 2:

And coming back from burnout in childhood is very hard because it means our trust has often been depleted. It means we're internalizing. Well, where is the space in the world for me? Where do I fit? Because everywhere I turn, someone's trying to mold me into something. So the fact that you have those spaces for those children to be and to move their bodies because we need that and to play and to stim, stimming is so important. But it can be embarrassing for families because of our fears about how our children will be received by others. But stimming regulates our nervous system. There's so much information about us.

Speaker 1:

It's soothing. Right, it's soothing.

Speaker 2:

Absolutely, and I think you know when we go to work, if we're in a workplace all day. I know as a mum, when I was a teacher, when I was in social work, whatever, whatever we're doing, I couldn't wait to get home at the end of the day, rip my bra off, put my slippers on, you know, get out some comfort food, all of that stuff we do. If, if we can take that experience and transfer it to our children for a moment, going to school all day, we might have fun. Yeah, we might love connecting with our friends.

Speaker 2:

I used to enjoy going to work. I had some great workmates. We'd have laughs, but there's nothing, nothing like getting home and having the space and the freedom to be who you are, without judgment, without criticism. You feel like you can breathe. Our children must have that as well. It's a basic human need and right. They come home from school and we're straight into flashcards and therapeutic approaches and the belief that the more we do of that, the more normal or adaptive they will be. We don't realize we could be pushing them into burnout and a loss of identity. Like who am I? We get into adulthood and often a lot of us have an identity crisis because we don't know who we are or what foods we like, or we haven't had the opportunity to explore who we are just as ourselves.

Speaker 1:

Because there are lots of structures and expectations put around foods and eating and what is normal. Again, you have to have your three veg and you've got to have this and you've got to have that, and that's so stressful and, like you say, that burnout, it's very real. And I'm just reflecting about you know you mentioning the autoimmune issues and how many people now have autoimmune issues, and you know people are holding they're just holding this energy inside them and they can't be who they are. And then I think about, you know, all the extracurricular activities that children are exposed to. Well, you know they haven't had enough at school. Now they're going to Kumon and they're going to this and they're going to that. And you know, unless the child is definitely interested, if they're interested in, like, a Minecraft group or a computer group or piano, whatever it is, it's there coming from their heart. But when it's again enforced to be more academic or catch up on your work, that would be really hard for children too yeah, I think too that our children bring with them an inherent wisdom.

Speaker 2:

They have so much to offer the world that we live in. Here we are, as adults, doing all this lip service around decolonizing our work and unpacking all these harmful ways that we've lived for hundreds of years, and our children show up with these offerings and these opportunities to reframe and to reconsider. And in our own fear and in our own trauma because we haven't unpacked our own stuff, we're so quick to go what? Oh no, you can't do that. No, and being in the business of. A huge part of what I find I'm doing now is working with families recovering their children from burnout, from really mental health crises that I never would have expected children to be experiencing ever, that I never would have expected children to be experiencing ever. But they are, and it's more and more common amongst neurodivergent children. So I'm working with hundreds of families to recover their children and, in that process, recovering families, because we're only doing what we think is right and good and best from what we're only doing what we think is right and good and best from what we're learning, and then we realize that we've contributed to harm and I really feel so much compassion for those families because it's not their fault. It's not. We're doing what we think is right for our children from a space of love, and I think the idea is around what's good and bad, what's right and wrong. Don't let your children access screen for too long. Like you said, the meat and three veg Sometimes, when you are in a situation where it's about keeping a child alive, those things can be put aside.

Speaker 2:

They have to be put aside. We have to reprioritize and this is what we're not teaching families. It's okay if your child's not eating three vegetables. Are they eating? Are? Are they fed, because fed is better than not? Are they having glimpses of happiness? Do they have relationships? Are they allowed to say no and be heard and is there no honored? These are the important things about development for any children and I just don't think that a lot of autistic families or people raising autistic children have access to know that people raise their children as regular children.

Speaker 1:

Christy, how do you know, like if a parent's listening and they're thinking about this, how would they know what would be some of the signs that their child is on the path to burnout?

Speaker 2:

a lot of resistance. I think it depends. It's so individual, but it depends on the safety within the family as well. Are they allowed to say no if they're allowed to say no it If they're allowed to say no, there's probably going to be more vocal resistance, exhaustion, not being able to shower. But what can be deceptive, I guess, in presentation is our children may not say no, they may just not do it, and we're taught as adults that we're supposed to exercise control here and take the reins, and so we might be believing that our children are choosing not to do it because they're trying to take control. Yeah, they are trying to take control, but when you're starting from behind it's not really control. They're trying to access equity and they're trying to access balance.

Speaker 1:

And I absolutely, I absolutely hate the word non-compliant. I absolutely, and I hear this time and time again from more institutional facilities. You know this child is non-compliant. They are non-attentive. They've got attention deficit disorder in this space and then I look at where their interests are and I'm like they've got great attention. It's amazing. Do you find that, christy?

Speaker 2:

I've lived that. I've lived that. It makes about as much sense to me now, finally, as saying to someone well, why are you not painting like Picasso? Why? Well, we have to have a goal for this and we must put together a plan. And that might sound a little bit extreme, but every human being has a spiky profile. We're not all mathematicians, we're not all writers, and the thing about being neurodivergent is we have creative brains. We definitely find different ways of doing things because we are divergent in nature.

Speaker 2:

So the word noncompliant that speaks volumes to me about the people using it. It gives us more information about them than it does the child. Really. It reminds me of the society we live in and there is a lot of really great change happening. But non-compliance or disability, non-compliance or disability, noncompliance or divergence, noncompliance or support requirement I mean, imagine if we felt so unwell as adults. Imagine if we felt so unwell that we couldn't get ourselves out of bed to the shower one morning and we have a team of people come in, no, come on up. You get. No, come on, we've got your clothes for you. You should have done that though. We know you can, but here's your clothes, we've run the shower off you go.

Speaker 2:

This is what we're being taught to do to our children. Now, children don't have the ability always to communicate their internalized experience because they don't yet have the insight to understand it for themselves. So we're making biased judgments based on their external presentation. And the ironic thing there is, if we're teaching autistic children to mask, that's what they're going to do. They're going to pretend they're okay when they're not, and so then we have this confusion around. Well, why aren't they going to school? Why aren't they getting in the shower? Why are they having toileting accidents? They were toilet trained before.

Speaker 2:

These are all signs of burnout and or leading into trauma, because if you can't access safety, if you can't be allowed to rest and we need a lot of rest and a lot of downtime our brain is constantly switched on, processing and making sense of all the sensory input. If we can't have a break from that, it's very dangerous, very dangerous. So when a child can't make it to the shower and I've been through this with all of my children it's us that needs to do the work on what our resistance is about. What am I really afraid of here? What's really going on for me? And I think that's more important than anything.

Speaker 1:

I think it's also the same for toothbrushing. Right, you know, whether it's showering, it's toothbrushing, it's having a haircut, because there will be times that the child can do it when they're in the just right place, when they're ready to do it. But I just love the way you talked about masking and that we are. We are teaching children how to mask, because the other thing is, christy, we as adults have learnt to mask. How many adults in our society can be who they truly are? Not many. It really takes a lot of guts to be who you truly are. That's a great analogy. The other thing I wanted to ask you about I read that on your website, intune Pathways, you wrote that Intune Pathways is passionate about radical acceptance and the celebration of neurodivergence. I would love to know. I know you've touched on it now, but I love that word radical acceptance. I love that phrase. It's not a word, it's a phrase. Could you just tell me what that is in Christy words radical acceptance?

Speaker 2:

It's definitely not what it's often understood as by probably the cohort of families we're talking about a lot today, and that is when people hear the term radical acceptance. I've often been criticized because people think I'm saying just accept whatever behavior is going on for your children. It's not that at all. It's not about behavior at all. It's got nothing to do with that. It's about the humility to be able to say and know and understand that every human being is created not by mistake and to radically meaning what I said before putting aside everything we think we know in order to be open to a new experience or understanding.

Speaker 2:

I used to be an educator who didn't believe in ADHD. I used to think that these children were just engaging with unruly behaviour because they were attention-seeking. And now I think, even if a child is what we term as attention-seeking, so what? There's a reason for that. It's reframing everything we think we know and understanding that there's no, instead of seeing things as good or bad, right or wrong, normal, abnormal, order versus disorder, understanding that we are all worthy of being accepted just as we are. There's a difference between requiring support and needing to completely change who we are just because we're told we're disordered, and radical acceptance is accepting in this moment, just in this moment, what's happening for my child or myself and instead of fighting every single moment, resisting every single moment, fighting what is causing ourselves more stress and pain and our children to be further and further away from being connected to us as parents. It's about having a curious mind, you know, coming at things and asking more questions than projecting more assumptions.

Speaker 1:

Radical acceptance oh, I love that asking more questions. I because radical acceptance to me is the feeling of all encompassing. When I think about it, I just think about my whole, because people can't see me now, but it's like my whole chest opens up and my arms embrace. You know, that is radical acceptance to me. It's not spiky, it's not pinpointed, it's just because it's a we have to. It's desperate because these days everything is so, I feel, is so structured, it's so judged.

Speaker 1:

You know, I can see kids that are even so-called neurotypical but are having burnout over and over because our society is made that way. You know, we are a society that has got high expectations, high goals. This is what we need and even like with the NDIS, which I love, the NDIS because of what it has given our society and at least it's put people who are neurodivergent and other people who have neuroabilities, different abilities, in the picture. But I feel that you know all of that, the goals, the goals around fixing the child, you know, when I look at the goals that we have and so again, it perpetuates the parents mindset and perception, because the culture is like that. It's not about, oh, that little j, little Jimmy, will have a happy life, or that little Jimmy will find himself you know, it's more around that little Jimmy will be able to say two words in, or little Jimmy will be able to turn, take in a social interaction. But nobody's really thinking about little Jimmy as the neurodivergent, unique individual that he is. They're thinking about what we expect.

Speaker 1:

Do you find that?

Speaker 2:

This is where I am so grateful that I am a big picture thinker, which you know, textbooks on autism would have you think. The opposite to that, I'd say I'd get wrapped up in details and I can. But being a big picture thinker means that anytime I ever have to make a big decision or I'm weighing up what's important for my kids, for me, I think in my last moments of being on this being a part of this, you know, experience of living now and being on earth and being alive will I be laying on my deathbed thinking at least I got little Jimmy to speak two words before April, the 21st in 1998. That's what matters, you know. Are we going to be laying this with our children or together, going now? There's something I want you to remember, little Jennifer, after I'm gone Make sure when you're raising your children, let them know that Nana wants them to always remember. Goals about literacy and numeracy are most important, or? You know, I read it breaks my heart. I had a family show me their plan because they were asking can I fit one of your programs in? And we often say, if you need help, we're happy to help. And and the goals on there were. One of them in particular was the child will learn to overcome difficulties with transitions and perform them successfully, perform overcoming transitions.

Speaker 2:

Now I'm 45 years old and I am. I'm still autistic, believe it or not. Haven't, haven't grown out of it, didn't didn't run away somewhere. I will always struggle with transitions because my brain is accustomed to routine predictability, and that's what makes me feel safe, but I know when something's going to be different. The information I need to support me is you have an autistic brain, christy, and so what might happen is you need to give yourself time to get used to the sensory input so it feels less threatening, so it's not as scary, and this will happen over time instead of absolutely no, you cannot have five more minutes to play with the blocks because it's not as scary and this will happen over time Instead of absolutely no, you cannot have five more minutes to play with the blocks because it's time to do this and you must do it now. Where's the safety? How are we really supporting children there? I'm going on a bit of a rant. I'm going all over the place, oh no.

Speaker 1:

You're a woman after my own heart. I am smiling from ear to ear and I just think, oh only smiling from ear to ear, and I just think, oh only if I had met you earlier, christy, and and I just feel so blessed that you know we're having this conversation, because I think you know you are so right. We need and I'm I'm a big picture thinker as well and I always ask questions as to why. What's the purpose of that? Who is this serving? What you know we've got all this money. You know like the ndis is a lot of money, and what are we really investing in? You know we're investing in these, these children, some of the children you know on this, um, what are they called? The? The circle that the mice run around and around, that they've got to do all these therapies, to do this, this and that, rather than because I would love.

Speaker 1:

I would love that more money is invested in parents, because when we invest in the parents, I've seen it myself through. You know the training and the coaching and the support I give parents. When parents are okay and they feel like they can stand for themselves, they can advocate for themselves, then they can advocate for their children. They're like the pillars of the children's development. So, you know, at the moment that's still not. I think it's coming. More and more people are realising that the parents are the ones that need support. And you know, like we always say, it's about the oxygen mask. Put the oxygen mask on yourself first and then, you know, help your child. But yeah, it's really, really interesting.

Speaker 2:

The oxygen, though, isn't it? I mean, where's the oxygen coming from, exactly?

Speaker 1:

Yeah, as long as it's not carbon dioxide, Anyway, we're not going to go there. That's my quirky sense of humour. Okay, so I just want to just quickly touch on I know there's no such thing as quickly. I want to quickly touch on PDA. And is it recognised in Australia? And if not, why not? Why not yet?

Speaker 2:

It's definitely recognised by some people. It's not a diagnosis. Usually it would be added to an assessment for autism. So it might be autism with extreme anxiety. It might be autism with demand avoidance. People use different language. It depends on who you're asking. Is it recognized? A lot of people will say it is. I mean, it's one of the most challenging profiles to believe because of its presentation, which is someone who just says no, a child that just says no, I'm not doing that. Very wise, switched on, connected children who know themselves. But what an incredible way to come into the world, but what an incredibly painful way if everyone around you says you're wrong and you know you can't say no. So it's recognized by the families and a lot of professionals. Often those professionals have personal experience as well, though, and it's undeniable. I think it's finding community and and the pockets of that we'll be able to support.

Speaker 1:

How would a parent know if they've got PDA? What would be some of the telltale signs? They have it themselves. Yes, the parents.

Speaker 2:

Yeah, that's hard because there's so much overlap. I mean, you cannot be PDA if you're not autistic. That's what research currently states, right, but then we don't even know enough about autism. Lots of adults walking around not thinking they're autistic. When they are PDA, you might struggle to be able to do things you want to do and you might have reasons for that. You might think that it's executive functioning. You might think, well, I'm ADHD because that's more socially acceptable. For some reason, pop culture, whatever it is, I don't know I'm ADHD as well and it can be very debilitating. But a lot of people I meet will say, well, my child's PDA, but I'm not. I have trauma and ADHD. Okay, cool. When you have a conversation with an adult with PDA, often they'll cover all bases, so you don't get an opportunity to make them wrong or give them unsolicited advice or give them a recommendation, unless they ask If you are an adult and you're questioning whether you're your PDA, I would always recommend paying attention to the feeling that you experience when someone gives you advice you don't ask for.

Speaker 2:

When someone tells you you have to do something could be something as innocuous as paying a bill. Do you struggle to pay bills? But you, financially can do you struggle to pay bills, but you financially can Do you struggle to brush your own teeth or get to the shower, but you're not in burnout and you don't necessarily have executive functioning challenges. I think it's really a process of unpacking. Why am I struggling to do this thing? What do I feel when people give me advice? That's the biggest one for me If someone says, well, what you need to do, praise.

Speaker 2:

How do you feel about praise when someone pays you compliments? Yeah, because often we'll be aware of those things, but the world has provided different reasoning for it. Oh, it's just my ego, or oh, it's pride? It may not be. Because a PDA actually, no matter how we present, we have a drive to be like this with people, places and things and us being above is just as uncomfortable as a loss of autonomy so you, you pda, is like to be um equal, but not above or below yeah, yeah, people think we're trying to be above, but what that is about is, if we feel below, we're going to behave in a way especially children that compensates for being down here.

Speaker 2:

So I always provide this image with my hands holding them together, to show us being equal with people, places and things. Because if someone says, all right now you got to go and brush your teeth, then I'm down here, I'm below. There's a power imbalance, a perceived, and it's separate from our consciousness. We don't go. Oh, you're trying to. There's, there's a power imbalance. Like a two-year old isn't going to say, oh, I'm sensing, my nervous system is sensing a power imbalance. Right now they're going to throw something at you. Yes, yeah, sibling, target their sibling, because that is compensating for perceived power imbalance. It's very complex, but it's very real. Yeah.

Speaker 1:

Just finishing off today, christy, what would be three recommendations you could give parents that are struggling with their, I guess, understanding where their child's at, being really worried about their child's future? Because being really worried about their child's future because they might be listening to this and go yeah, but the school wants this and grandma wants this and I need them to be going to university. What's going to happen? Oh my gosh, I'm not a good parent. You know, what could you say to someone like that? What would be your words of wisdom?

Speaker 2:

Well, if we're trying to have our children become less anxious, we're not modelling that. First of all, because if we're living in the future of what will become of them or us, or what's going to happen, we're completely escaping the now and all we have is the now. So I would say to parents the most helpful, most practical thing that we can do is access lived experience community. There are autistic adults who are ready and willing to connect with you, to welcome you with open arms, to share their lived experience, so you can reframe, so you can ask questions. The other thing I would say is, if you like making a list, like I love a good list. How good is a good list really? I've got one here.

Speaker 2:

I've got a thousand.

Speaker 2:

I love making a good list, but God knows where it ends up. I find them years later in boxes and drawers. It's the ADHD I know. When I say, if you like making a list, I'm speaking to probably 98% of the parents, if their children are not neurodivergent.

Speaker 2:

I used to do something as simple as writing down what's disturbing me and being brutally honest with myself. What am I really worried about? And one of mine was my child will end up in residential care in the future, like I've got big stuff out there in the ether and reminding myself you know what, as much as I see a lot of painful stuff in the world, there are also the most beautiful, incredible, wonderful humans that exist, and the world is changing all the time, and I can control what's within my control. Control what's within my control and I can't do anything more than that. If something's bothering me on a daily basis, like getting my child to school by 9am, what am I so worried about with that? Why can't we have an arrangement where I actually share with the school?

Speaker 2:

Well, this is hard for my child. It would make our lives easier if we could get there when we get there, and if they're not okay with that that's not our stuff to worry about. That's not, and I understand privilege and I understand that sometimes we are under a lot of pressure with that stuff, but it's prioritizing, like what? What really is important? Can we find advocates to support us to fight for our needs and our children's? Because when we take away our own stress, when we relieve the pressure we feel, our relationship with our children does a 180. I mean, a lot of this stuff is about the stress we are living with. So accessing a different narrative and finding spaces where we have a sense of belonging, that is, safe, and accessing support for ourselves most important things.

Speaker 1:

Christy Forbes. I loved this conversation. I am just my heart is fluttering. I'm hoping that we could have more conversations about stuff any stuff in the future, because I think it's so important for parents to have these perceptions, have these words that come in, because there's so many that are not like that. You know, this is like it's coming more and more, but we also understand that we live in a society that is quite far from what we were talking about today. So thank you so much for coming on the podcast and you are a beacon of wisdom and hope and just so refreshing for so many people.

Speaker 1:

I know for me and it just validates to know what I'm doing is on the right path and I know that other people are. The people that are working this way are definitely on the right path and we just need more and more people um, doing that. What's really interesting? I'm just gonna, um, let the listeners know I'm looking at Christy. She's in her car and there's little saplings that are planted at the back there of trees and that, to me, is so symbolic because it's like we have planted these little ideas and those little saplings are going to grow to be beautiful big trees for our environment. So, yeah, can.

Speaker 2:

I add to that.

Speaker 1:

Yes, definitely.

Speaker 2:

On the other side is a cliff edge.

Speaker 1:

That's where you're looking. I'm looking at the saplings.

Speaker 2:

There's two pathways. We can stand on the edge of the cliff and hope we don't fall off it and feel like we're stuck, or we can plant seeds to um move into a new pathway, a new narrative you know, yeah, and I I love the work you're doing and thank you so much for for today's conversation thank you, thank, thank you so much.

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Dana Baltutis

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