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Podcast Episode Transcript

Episode 24

Interview between Speaker 1 (Meg) and Speaker 2 (Kristy Forbes)

[Introductory note]
If you're enjoying this podcast, you'll love my free 50-minute training, ‘Autism-specific strategies that transform OT practice’. In this training, I dive into the places where many OT's are getting autism wrong, why it matters way more than we realize, and four concrete strategies you can start using right away. We even talk in-depth about what we know now about autism learning styles, because when we can shift our perspective and truly consider how autistic kids think and learn, we can start generating more meaningful and effective interventions to help our clients find more joy, independence, connection, and acceptance in their lives. Visit learnplaythrive.com/masterclass to start learning right away.

[Introductory music]
Welcome to the Two Sides of the Spectrum Podcast. A place where we explore research, amplify autistic voices, and change the way we think about autism in life, and in occupational therapy practice. I’m Meg Proctor from learnplaythrive.com.

Meg: Before we get started, a quick note on language. On this podcast, you’ll hear me and many of my guests use identity-affirming language. That means we say, ‘autistic person,’ rather than, ‘person with autism’. What we’re hearing from the majority of autistic adults is that autism is a part of their identity that they don’t need to be separated from. Autism is not a disease, it’s a different way of thinking and learning. Join me in embracing the word ‘autistic’ to help reduce the stigma.

Welcome to Episode 24 with Kristy Forbes. Kristy is an autistic support specialist for neurodivergent people and their families, and professionals. She's the founding director of both inTune Pathways, and The Neurodivergent Co. Kristy is autistic. She's also an ADHD-er, and has a PDA profile. She's the mother to four autistic children, and has an autistic husband. Through her background as an early childhood educator and her own experience, Kristy supports families in raising autistic children to thrive. So, this interview is the second interview in a two-part series here on the podcast on PDA, or pathological demand avoidance. This interview was recorded late at night here in the United States, so that I could catch Kristy across the ocean.

I realized after this lovely interview that my microphone had not been on. So, I recorded the whole interview unknowingly with the computer audio. The audio is fine, it's not as crisp as usual, and it is totally worth it. So, bear with me through my audio in this interview, because Kristy shares so much good advice that can truly transform how we work with PDA-ers and also with any child in any family to support their drive for autonomy, connection, and safety. Here's the interview.

Hi, Kristy!
Kristy: Hi, thanks for having me.

Meg: I'm so glad to have you here, and this is such a nice follow up to our last episode on PDA. We're gonna talk all about your experience with PDA individually with your family and your work, but I want to start by asking you, how do you explain PDA to someone who's familiar with autism, but not familiar with the PDA profile?

Kristy: Yeah, that's a really great question. It's something I think about a lot, because even inside of the autistic community, there has been for me a sense of belonging, but there's also been a sense of dismissal, I guess, to a degree. Because I think just as I thought for a long time that my experience is purely an autistic experience before I knew about PDA, I think there's a lot of people in the autistic community that look at our behavior, or read about things that we say, and relate it back to their own experience. But I guess the best way that I could describe it — which is a really difficult thing, to be honest, because it's a complete neurobiology — is that anything that threatens to compromise my autonomy or my freedom disables me.

And I'm not just an autistic person with extreme anxiety. I'm not an autistic person with demand avoidance. I'm a PDA autistic person. And I think there is a really significant difference between those things. I think that when we talk about PDA as 'demand avoidance', that's when there becomes a lot of confusion inside of the autistic community about what PDA is. And for me, it is a complete neurobiology. So, at my foundation I am autistic, but I have a different autistic experience, with lots of similarities.

Meg: That's so interesting. We hear over and over on the podcast people saying, "It was so important to me to find out I was autistic, because before I thought I was just a troublemaker, a misfit, an outcast. And then I learned this about myself, and I could find my people, and learn to accept myself." And you're saying that even as an autistic person, you had to find your identity as a PDA autistic person in order to find that path to understanding, or accepting, or finding community for yourself.

Kristy: Yeah. I guess the thing about community is part of my PDA expression — I mean, my wiring means that my threat response is consistently activated. So, my response to people, places, and things always comes from one of the four F responses; fight, flight, freeze, or fawn. And so, for me, my belonging, my sense of belonging and community is that I have connection; that I'm never truly immersed in community because of that threat response. So, like many PDA-ers, I'm always on the periphery. And because there are so many potential triggers that my brain receives as a threat to my autonomy or my safety, it never feels completely comfortable to be too close, or too connected, or too immersed with other people.
And that's got nothing to do with the people and everything to do with my neurobiology. So, my sense of belonging, what community looks like for me as a PDA-er would be different to somebody else who says, you know, "I'm in groups with autistic people, and I'm doing this with autistic people," whereas mine is just knowing. Just knowing that I belong and having connections with that community in my own unique way.

Meg: Right, that makes a lot of sense. I want to track back to one thing you said, because I think fight, flight, and freeze, are familiar to a lot of people. Let's stop a moment and talk about fawn. What is that response?

Kristy: So, fawning is — I guess it's best understood as a trauma response. It can present in a similar way to masking but they're different. They have similar functions though. Fawning is a survival technique. Sometimes it's a conscious behavior, sometimes it's unconscious. But for the PDA-er, fawning is a way of feeling like we're maintaining some form of control, even if that's an illusion. So, an example of that would be for me personally, in Grade 6, we had this new teacher come in and I 'd spent a day with this teacher previously in another grade. And this teacher was scary, and unsafe, and would throw things at the students, and yell, and scream, and swear. And I really struggled in school. I left at 15, I was disconnected, I spent time in isolation and on behavioral modification programs.

But in Year 6, when we had this teacher come in, I knew instantly I was not safe. So, fawning for me meant becoming the teacher's pet. Keeping my enemies — or what my brain perceived as my enemy; in other words, my lack of safety — close, so that I wouldn't be targeted. So, even though, you know, when you hear that story, it's clear that I was terrified. I didn't feel safe. I was not in control at all. But my brain perceived that I was, which allowed me to continue going to school, but I had to fawn, and that was exhausting. I guess it's adapting to an environment or a situation, and pretending everything's okay when it's not, rather than masking which is developing a whole persona and cultivating a whole image to be accepted. So, yeah, masking is more about surviving any given moment by adapting.

Meg: Now I was gonna ask you what the toll of that was, because we know the toll of masking on a person's well-being is profound and it's linked to depression and suicidality. And you said right away that fawning helped you feel in control, helped you maintain a sense of autonomy in the face of something that seemed to be a threat to you, but it was exhausting.

Kristy: Yeah. It is exhausting, and it still shows up in my adult life, even though I've done so much work on being boundaried with people and having a healthy sense of self, exploring my autistic identity. All of those things that I've worked really, really hard at. There are parts of being autistic that are just inherent and the difference is becoming conscious of those things. For me, part of being a PDA autistic, is that I am always conscious of those threat responses, and sometimes fawning will come up. And there are really good examples of that in my life every day where I still pretend that things are okay with other people when they're not.

That's because part of my autistic nature is to be a carer, and to be deeply empathetic and empathic. So, instead of putting my own needs first sometimes, or setting that boundary, I can't do that in the moment so I fawn instead. And it's not until I've had processing time, which is what I need as an autistic person, to come back to the situation and go, "Actually, that's a behavior that is a survival technique for me and that's not okay. I don't need to be fawning. Instead, I wonder how I can actually reframe this and come up with a healthy boundary that feels safe for me, and honors the other person as well." So, fawning still shows up.

Meg: I'd love to learn a little bit more about your journey as a PDA autistic person, sort of through your childhood, and into parenting, and your family life.

Kristy: Yeah. [Laughs] I'm laughing because it's, yeah. Look, I love — there's something so freeing, and exhilarating, and liberating about having PDA children. It's like, in the beginning it threatened to undo — it felt like a huge threat to me because it threatened to undo everything that I had worked hard at becoming, but that was masking and fawning. So, for me in my childhood, I did not grow up in a generation where it was safe to be unapologetically PDA. I was more subtle about it.

But then, in the school system, by the time I got to high school, I was consistently in trouble. I was running away from school. I was doing all the things that teenagers who, I guess, experienced some form of adversity do. I was getting into drugs and alcohol and not attending school. But when I was at school, I was constantly on conduct cards that teachers had to sign and write comments about my behavior and my temperament in every single class. I was taken away from my peers and forced to have my breaks outside the principal's office alone.

I was just isolated more, and more, and more until I was actually put into isolation. Official isolation. I was put into a room in the library. I had a supervising teacher outside the window, and I was not allowed to speak to anybody, I was not allowed to see my friends. I had different hours to everybody else to be there. And it was awful. It was just awful. And for me, in terms of, you know, my self-esteem, and my social network, and my supports, and all of that was all taken away as a form of punishment because people didn't know then what they know now. And it ended very, very badly. So, I didn't even know that I was autistic. I didn't know that I was an ADHD-er, I didn't know about PDA, didn't like any of that stuff. And I look back now and I go, "How could I have been missed? How was I at least not picked up as being ADHD?" But that's because we were gendering neurodivergence, especially ADHD with boys.
But yeah, moving into parenthood. [Laughs] By the time I became — you know, in the last few years when I had my most unapologetic little PDA person, who is loud and proud, and says and does whatever the mood calls for. That was terrifying to me. Absolutely terrifying, because I just thought, "How am I going to explain this to the world? How am I going to—" and I already had autistic children, but they were not like this one little firecracker. But everything about her was mirrored back to me in myself. And so that was very triggering and very traumatic because it was bringing up old stuff for me. But it was also very healing. So, yeah. Our lives have completely changed. I was a teacher. And now I home-educate, and look, our lives are just so different now.

Meg: Your journey is especially interesting because so many autistic people, especially PDA-ers, especially ADHD-ers, talk about how difficult childhood was and how in adulthood, they've been able to shape their life in a way that feels much more comfortable for them. And it's in most regards completely unnecessary that neurodivergent people suffer in the way they do, and that their sense of self is taken from them. You know, we know a lot about neurodivergence now, but autistic kids, I'd say especially ADHD-ers and certainly PDA-ers are shamed, and their sense of self is really destroyed often in school and in childhood. It's really interesting to hear your story, because this it's like now you get the chance to parent this child, or to create the childhood that you probably wish you had. And I'm interested in what that looks like. How do you exist in the world, with all of its demands, but sort of protect your children's sense of positive self-identity, and confidence, and goodness?

Kristy: I had to do a complete reframe on what parenting looks like in our family. Because for the PDA-er, collaboration and relationship that is underpinned by transparency and honesty is so important. Without that it won't work. So, I can't parent from an authoritarian approach. And I, in all of my rich PDA-ness before I knew about it, was very controlling as a parent. And I had this horrendous experience with my eldest child, who's now 23, where we experienced estrangement and complete disconnection because of my grasping for control. As I learned about PDA and as I finally accepted it in myself, it probably was the hardest thing I ever had to do, was to start letting go of things.

And I see that this is so difficult and so challenging for so many families because we are indoctrinated as parents. We are conditioned, we are socialized, we are encouraged to toe the line and conform. And so, for me being autistic, those things were very important to me as well. Being someone who is rigid about needing control over my children and how they present to the world came from a space of trauma for myself, but also fawning for society, masking for society. So, there were layers in there, and my children were responsible for absolutely none of it. I owned all of it, and I had to take responsibility for that and work on healing and exploring that stuff for me, and I continue to do so. But it was difficult to let go.

I was fortunate enough to have this one particular child out of my four who basically energetically presented to me with this life motto of, "It doesn't matter what you do, or what you say, or how you feel, or what the consequences are that you project onto me. I will still be exactly as I am in my most authentic way of being, because this is my birth right." And as much as it terrified me, I knew that this was important. I knew this was going to be healing and powerful. So, you know a lot of people might hear your question and think, "Yeah, how does it look? You know, it must be really exhilarating, and being able to allow your child have the autonomy and the space they need," but it's not always easy to do that because it means that I have to be attuned to the things in the world that can destroy my children, and I have to be 10 steps ahead of that happening.

An example of that is school, mainstream school. My child wanted to go to school, and a lot of PDA-ers are socially motivated. So, we want to be at school. So many PDA children are desperate to be in that environment because they love being with their peers. But what happens is PDA is not a decision we make. It's an inherent, powerful, protective force, and it knows when something is a threat or unsafe for us and will not allow us to comply. So, we honor our children choices, and we support them in trying things, but when we see that their sense of self is being significantly thwarted, we have to step in sometimes and say, "Okay, this is enough now," and that can be really hard.

Meg: Yeah, that makes a lot of sense, and I imagine it's a lifelong journey of, "This is what I want — or this is what I want to want — and now here's what's happening, and what do we do next." It sounds like you're really not just doing that process for your children, but doing it together with them. Sometimes as, "I have to protect you now. You're little, and I see this thing happening," but also, sometimes as, "Okay, make that choice. Let's see how it goes," so that they're going to grow up into people who know how to try something, evaluate it, and figure out their next move. Is that really an important part of your process, this problem-solving together, letting them make choices that you think probably won't land, but seeing the outcome themselves rather than having you control that?

Kristy: Yeah, absolutely. I mean, the thing about PDA is, if we are not allowed to experience what we need to, then that can be a trauma. That can be something we hold on to and resent our parents for, or other people for. And when we are children as PDA-ers, for me, personally, I had very little ability to be able to take responsibility for my own actions and choices. And so, my pain felt like an extension of my world. Everything was being projected, everything was happening to me. I didn't feel like I was a part of a big picture. So, I couldn't understand that when I wanted something to happen, if it didn't happen that was the end of my world. And I didn't have a second thought for people outside of that experience or my experience, which is common for children anyway.

But for PDA, I carried that with me for a long time. So, sometimes we risk our children growing up and saying, "You never let me do this thing when I was a child, and all my friends were doing it, but you wouldn't let me do it." So, when it came to time for my child to go to school — gosh, it was so hard because I knew as a professional that's sat in consultation with thousands of families that, you know, I had enough evidence, and my own personal experience, and I'd been a teacher, a primary and secondary teacher — I knew so many different variables attached to the outcome for a PDA-er child who wants to be at school. And very little of those variables end up in a positive space. So, I had to let go, and I had to do the best I could to educate their environment, their educators, everything. And that was all I could do, and support them. But then I also had to remember what the signs of trauma are in children through their behavior, because a lot of children who are autistic, anxious, PDA will not express, "I'm having a really hard time."

Sometimes we don't know we're having a hard time because we're masking and fawning, and we hold on to the parts that are positive, like being with our friends at school. But when I started to see things going on at home that I knew signified real trouble that was being internalized, I had to step up and say, "You know, I think maybe we could have a conversation. Maybe it's time to have a conversation about some alternatives," and I had planted the seed from very early on that if this gets too hard for you, if this feels too hard, then we can think about maybe learning at home. I had to lay a foundation of positive identity.

And that was being — that was being just obliterated in the mainstream system. And the difference was, my child started coming home from school and saying, "I hate being autistic, I don't want to be a PDA-er anymore. Nobody understands me." Now, if my child was in an inclusive environment with autistic peers, the conversation would have been different. They would be coming home and saying, "I'm having a hard time with my friends. I'm having trouble being understood," but they certainly wouldn't be coming home and saying, "I hate being autistic. I don't want to be autistic anymore. I hate being a PDA-er." And those are the warning signs that I had to look out for.

Meg: That's a really useful delineation because we know that kids can do things that are hard, and they have the right to try things and fail, and we don't want to step over into being so protective that we don't let them build their resilience, and learn about the process of setting goals for themselves that aren't quite right, and falling down and making a plan B; but being mindful of when that steps over into trauma or into eroding their sense of self, then we step in and we say, "We have to do something different here, because these things are so foundational for who you are, and for the rest of your life," to really appreciate that sort of balance that you're painting for us.

I want to shift a little bit. One of the things that you talk about is a family-centered approach to PDA in your work. And you just mentioned the thousands of families that you've sat down, and talked to, and coached through things similar to what you've been through with your kids. What does the family-centered approach look like, and why is it important for PDA?
Kristy: Yeah. So, I think a family-centered approach is so important because we are looking at the needs of every single member of a family unit. Too often I see all of the focus placed on a neurodivergent child or the person who is struggling. And whilst that's really important, if our focus is only on that person and creating an environment that works for them, then the balance is off. We are engaging in something that's counterproductive because then we have parents whose needs aren't being met, whose cup is always empty. They have nothing to pour from. No energy, no sleep, no time for basic needs to be met. And then we have siblings who sometimes feel like they're not getting the best of their parents, or not getting enough of their parents’ time. So, I really hold space for people to understand.

Because, you know, as parents we're taught that it is selfish to look after our own needs, or we feel a lot of guilt around doing that. But I think it's important for people to understand that it's a responsibility. Essential care, for every single member of the family, is a responsibility. And we know this because we see it consistently reflected in the data in all of the journal articles around family life when raising neurodivergent children, or being neurodivergent parents, that people are not doing so well. So, giving parents’ permission to meet their own needs as well, looking after siblings, and this can be really, really hard to do. It's about finding ways that work for them. It's about tuning out all of the information that society throws at us about what we should be doing to achieve great mental health outcomes, and physical health, and how much we should sleep and how often, because in neurodivergent families, it's not going to look like that. And people consistently beat themselves over the head about not fitting this generic framework for human beings. But that's because we're neurodivergent people, we need different things. So, this is why a family-centered approach is really important.

Meg: That is such a useful shift. I am very focused in my podcast, in my work, on helping non-autistic neurotypical people like myself better understand the perspective of our autistic clients, and stop asking them to do all of the work, and I think this other piece that you're describing can get lost when we are moving in this direction of what does the family need, what do the parents need, what do the siblings need too. So, yes, how can we stop asking the autistic person to be the only one learning new skills, compromising what they want, and changing, growing, perspective-taking, all the things autistic people are working so hard to do. The other family members are going to do those things too, but not at the cost of anyone's health and well-being, ideally.

Kristy: Yeah. And having different needs. Like, for me, my essential care as an autistic parent is no different to my essential care as an autistic person. So, that means for me that on some days my, my noise-cancelling headphones are going on at 6 o'clock and I'm saying to my family, "I know you need me right now, but I am no good. I am not in a place where I can be kind and fair. So, you can continue yelling at me, but my headphones are on and I cannot hear you." And sometimes that means that other people are not going to be happy in the family but I — those are the moments that I want to prevent from happening. I want to be sure that I am looking after myself across the day so that I can be fun, I can be fair, and kind, and balanced in my approach, but not feeling like we're failing as families if we're not engaging in five hours a week of social networking or taking our autistic children to, you know, copious amounts of therapies.

It's about tuning into what works for us as individuals, and what has our family members feeling comfortable and safe. We don't have to live life like everybody else, and we don't have to live life like everyone tells us to. It's important for us to give ourselves permission to work out what feels right for us.

Meg: I love that example too, actually, of you putting on your headphones and saying, "This is what I need right now," because you're modeling for your daughter that you as a mom are still a person who has needs, and that they matter. So, we can, I think, impact the next generation of parents in demonstrating self-care, and boundaries ,and not disappearing as people when we're parents. I think that's a really nice reminder to those of us who are providers working with families to remember the autistic child is our client, and they exist within the complex web of their family, and their family’s needs. What are some of the tools that you teach to families whose kids are newly diagnosed as autistic PDA-ers?

Kristy: I think the most important things are prioritizing some form of emotion, however that looks for the family, with autistic community. So, I'll often point them in the direction of writing by autistic adults. Some groups where autistic adults hold space for non-autistic parents to learn about autism and to be able to ask questions about autism. I think it's really important for parents to be open to the possibility of exploring their own potential for neurodivergence, because this often goes unnoticed more often than not. And I guess the importance of that comes back to what we were talking about earlier on when I was describing the layers of complexity within my own life experience that I was projecting onto my child; and that doesn't make me bad or wrong, it just means that often, if we have trauma, or if we have challenges or difficulties as human beings, when we have children, a lot of that stuff comes up because we see it reflected back to us in our children.

So, having the conversations with families about healing, about exploring the unknown that exists within them, and not being afraid of that. Knowing it's okay to say, "No," knowing that when your child is identified autistic, PDA, any form of neurodivergence, there are going to be — the initiation process is generally that families are going to be told, "Go and get a good psych, a good OT, and a good speechie, and maybe some other form of therapy." And I want to say to those families — I always say to those families — "Let's shift away from the generic framework that comes along with the word autism, and remember that this is a child. This is a human being, a unique individual. An autistic individual, yes, but they are a unique individual. And we tune in to their needs across their lifespan. So, they may not need a psych, they may not need a speechie or an OT every single moment." And I think, remembering that the process of engaging supports is not to treat autism or to overcome it.

The autism is not separate from the child, they're an autistic child. So, looking at how can we support them in their skill building, in whatever they want to be doing, what we identify as their needs in any given moment, because those needs fluctuate. So, not coming in at it like, "Whoa, autism! Get on to that, we've got to get all these things in right now," because that's what families experience more often than not is this panic, this alarmist — I mean we're calling characteristics of autism 'red flags' in children. If that's not telling us something I don't know what is.

I mean, yeah, I think it's important to tune out a lot of the stuff we're reading in textbooks and connect with the autistic community to learn from lived experience, and to find therapists that will actually be interested in what you need as a family, what you want for your children. How your children respond to that therapist is really important.

Meg: That's wonderful. I'll link to some of the types of things that you mentioned in the show notes as well for therapists who are looking for ways to connect parents to autistic voices and autistic adults. I remember as a therapist, as an OT in a clinic, getting a number of kids who would come in, and I would do an evaluation. And I just had to ask the question, "What's the problem here?" and often the parents would say, "There's no problem. The pediatrician told me I needed to go to OT because he had to autism," is what they would say, "He was autistic." And I would give them permission to not get OT. And I didn't have any goals to write, I just saw so many kids who they didn't need whatever support I could give to engage in the meaningful activities in their daily life.

And there were so many better things that family could have been doing with their Tuesday afternoon than hanging out in my clinic. So, I think that's great advice. Take what is useful to you in that moment in time for your family. So, of everything we've talked about today, if there's just one shift or one takeaway you hope people listening get from what we've discussed, especially thinking about their work with autistic PDA-ers, what's that one takeaway?

Kristy: Suspension of disbelief is really important. It's easy for us on the outside to observe behavior and to make assumptions about what it means. We do that, generally, with autistic people anyway, but with PDA-ers, our behavior can look the same as autistic non-PDA autistics and mean a completely different thing. And understanding that what your perception of a demand is will not be the same as what our brain translates as a demand for us. It surprises us sometimes. If I get too excited about my own hobbies, my brain mistakes excitement for threat, and I cannot engage with those hobbies until I've communicated back to my brain through my sensory systems that it's safe.
So, when a child says in therapy, or with any professionals, "I want to, but I can't," they're telling the truth. If a PDA child says that they can't do something, then they are telling the truth. It may look like they can just get over it and do something in any given moment, but their brain is engaged in the threat response and is doing everything it can to prevent that child from dying. That's the one job that threat response believes it has to keep a person alive. So, to believe the child.

Meg: Thank you, Kristy. Tell us what you're working on now and where we can find you online?

Kristy: What am I working on. Wow. So, I've just launched a 12-week program, 'inTune with PDA™' actually for families raising PDA-ers. Registrations closed at the moment, unfortunately, but I run that three times a year. I also have a monthly membership where we hold space. I say 'we hold space' because I am one of those families, and we come together, and hold space for one another, and support one another for families who are raising neurodivergent children. And I also run 'inTune Families' for families raising non-PDA autistics, which is a 12-week course. And of course, The N. D. Co., The Neurodivergent Co., which is a membership platform full of autistic adults that bring a varied background of experiences talking about neurodivergence.

Meg: I will link to all of your wonderful projects in the show notes so people can just dive in and get really familiar with all the wonderful work you're doing. Thank you so much, Kristy!

Kristy: Thank you so much for having me.

[Ending note]
Thanks for listening to the Two Sides of the Spectrum podcast. Visit learnplaythrive.com/podcast for show notes, a transcript of the episode, and more. And if you learned something today, please share the episode with a friend or post it on your social media pages. Join me next time, where we will keep diving deep into autism.