Kristy Forbes (00:06):
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 Kristy Forbes. I'm a late identified autistic woman. I'm an educator, I have ADHD, and I am a PDA autistic. If you're not sure what PDA is, it stands for pathological demand avoidance. Ooh. We'll get into that in future episodes.
(00:36):
I'm also a parent of autistic children, and my passion is shifting away from the medical disorder narrative and into a newer awareness and radical acceptance of the social model of disability. Thank you for joining me.
(00:57):
All episodes of the In Tune Pathways Podcast are recorded on Warandary Country. The Warandary and Warungu people are the traditional custodians as part of the Caller Nation. I pay my deepest respect to elders, past and present, and at In Tune Pathways, we are committed to the amplification of First Nation voices and decolonization in our work. Sovereignty was never seeded. This country always was and always will be Aboriginal land. Today I'm speaking with my colleague and really good friend, Kieran Rose. Kieran is a published, mainstream, and academic author; an international public speaker, trainer, researcher, and consultant to organizations all over the world with a specialization in autistic masking, autistic burnout, and autistic identity. Karen was diagnosed autistic in 2003 and is dad to three neuro divergent children, two of whom are autistic.
(02:04):
Kieran and I have been friends for a number of years, and we've worked together in many different areas, but the amount of conversations we've had around our own personal experiences as autistic folks, I honestly couldn't count. Today we're talking about behavior, and I hope you enjoy the conversation.
(02:28):
Hello everybody!
Kieran Rose (02:29):
Oh.
Kristy Forbes (02:30):
Welcome. I'm Kristy, and everybody knows that, but this is Kieran. Kieran Rose is an autistic advocate over at his page, The Autistic Advocate. Would you like to tell the friendly folks a little about what you do here?
Kieran Rose (02:46):
Yeah, I just don't post on my page very much. That's a warning if you ever go over there. That's usually because I'm busy doing other things. I'm a consultant and trainer and speaker, and I'm currently writing a book, which is why there's no activity on my Facebook page whatsoever, because my head is workmanship mode at the moment, so that's me.
Kristy Forbes (03:04):
Let's talk about autistic behavior.
Kieran Rose (03:06):
Okay.
Kristy Forbes (03:07):
So we thought we might have a chat about behavior. Have we talked about this before? We've covered a lot of topics in a lot of different-
Kieran Rose (03:15):
I don't think we, uh, I think we've touched on it, but I don't think we've specifically focused on it.
Kristy Forbes (03:20):
Okay. So I think the first thing that comes to mind for me when we're talking about autistic behavior is that it is not the same as non-autistic, non-functional behavior, or dysfunctional behavior. And I think it's painted that way a lot of the time, so when we look at therapies that are put together for autistic children or early intervention, we love that language. Generally what forms the basis of a lot of behavioral therapies are positive behaviors, what is this unspoken idea that the way that we behave as autistic people, particularly in childhood, is the same as dysfunctional or non-functional, non-autistic behavior.
(04:07):
So someone would look at an autistic child and a non-autistic child, and if they did the same thing, we believe it meant the same thing. But the reality is, it means one thing for the autistic child and a different thing for the non-autistic child.
Kieran Rose (04:23):
It's just heavily pathologized, and we keep coming back to this idea. When you and I talk, we keep coming back to this idea that, when you look at the diagnostic criteria, and when you look at how people are viewed, that there's this ideal perfect human being that acts in a perfect way, they move in a perfect way, they think in a perfect way.
(04:41):
When we're measured up against that, we obviously can't meet that, so we fall flat and they've decided this is how we fall flat. And behavior is one of those things. To huge amount of bias, massive amount of bias, because there's an assumption that because a particular group of people behave in a particular way, and because they're the dominant majority, then they're right. That what they do is the right behavior, that they act in the right way, that everything they do is wonderful and brilliant. And if you deviate that from in any way, you're dysfunctional. You're broken. You're acting out. You're misbehaving.
(05:14):
And a lot of the rules that we have in place reinforce that, a lot of the social rules that we have in place reinforce this notion that there is a right way of doing things and a wrong way of doing things. I mean, actually, if you take a step back and you look at divergency everywhere, animals, plants, whatever, anywhere in nature, there is not only a diversity in terms of how animals or plants or whatever look, even though they're part of the same species.
(05:37):
There's also diversity in how they behave and the things that they do. There's not uniformity everywhere, so why should there be uniformity amongst humanity as well? There shouldn't be.
Kristy Forbes (05:46):
Yes, exactly. (Laughs) We have talked about this, actually. I think it was just the other day we were talking about this. (Laughs) But a classic example is rocking. So, you know, for many autistic people, rocking is a way that we move our bodies, but even in saying that, it will mean something different for so many different autistic people, and not every autistic person rocks, either.
(06:11):
But we have this, um, it's really hard to stay on topic when we're talking about anything to do with autism because there's so much interwoven history and pathology, but when we look at trauma as an example, for a really long time, and I know even now, many clinicians will rule out autism if there is a history of trauma because the understanding was, for a long time, that trauma would mimic autism. And if we look at a physical behavior as an example, rocking is a great example.
(06:47):
So most people who don't necessarily have an understanding of autism, that would probably have an understanding that a traumatized person will engage in rocking. Maybe a child, even animals will engage in rocking if they're traumatized. However, we understand that a lot of autistic people rock as well, and it doesn't necessarily mean that a person is just stressed or upset or unhappy. A lot of people rock because they're experiencing joy or happiness. It is soothing, and calming, and regulating.
(07:25):
Some of us, uh, might rock ourselves to sleep. I'm one of those people, so I will rock myself to sleep in a very repetitive kind of way on my side, and I do that because, the minute I stop rocking, I feel this physical sensation throughout my whole body, like pins and needles, and it's, it's like sensory input. It's very, very soothing. So I guess, that's just one example of what would be considered a behavior that would have different purposes in people.
Kieran Rose (07:54):
I think part of the problem is that when anybody talks about behavior, usually it's a negative context. We don't think about behavior as also a neutral and a positive thing as well. You know, you think about it, everything that people do is a behavior of some sort on a very basic level. So when you, do you have that idealized image of what behavior should look like, and then you have someone who maybe expresses what you deem as a negative thing, you automatically assume it is a negative thing.
(08:23):
And it's the same with, it's like with trauma, as you mentioned there. Trauma amongst neuro divergent people can express itself in a very different way than how it can express itself in non-neuro divergent populations. Um, you, like masking is a perfect example of that, because once you get beyond the coat switching and everything that everybody does, these are human behaviors. When you get to the extremities of autistic masking, when you're adding stuff to that.
(08:46):
All of that is still by trauma, yet for a non-autistic person, you're looking at a traumatized person, but you don't see the trauma because they're acting like you. That is the trauma expressing itself. So wrapping your head around that is quite a complex thing, quite a difficult thing to process, especially when you come from that kind of non-autistic, non-neuro divergent perspective because you only have your own frame of reference for what trauma looks like.
Kristy Forbes (09:11):
Yes.
Kieran Rose (09:12):
And if you're looking at a marginalized group whose voice isn't listened to, and you're, through your privilege and whatever, you're not listening to them, you're only ever gonna apply your personal perspective and your frame of reference to their existence, and that's why we end up with the problems that we do.
Kristy Forbes (09:28):
Absolutely, and it's not just about trauma. It's, like you were saying, it's behavior in general.
Kieran Rose (09:33):
Yeah.
Kristy Forbes (09:33):
And I think you're talking about a global, an international, this collective understanding around behavior, and let's focus on children, because this is where the main focus is. How much of what we've come to understand as good or bad behavior is just social and cultural conditioning? Because you know, it wasn't that long ago that I heard somebody who's been in the media in Australia for a really long time talking about childhood behavior actually s-say to the camera, "You know, I've come to understand that we've got it really wrong with young children and the way that we look at behavior when we're using reward and punishment to address behavior or respond to behavior."
(10:18):
And I just thought, "Thank god. Thank god people with influence are starting to say this." Because, just because a whole heap of people think one thing, it doesn't mean that it's right. And this is half the battle with neuro divergent families. Going out into public, and our children having a moment or our child, or even us having a moment where we need a break or we need to step out or we can feel that we're gonna have a meltdown, or I don't know what it feels like for you, but I can feel a meltdown building for a while.
(10:58):
And for me, I know that if I don't remove myself from the situation, it will happen, and it's like having an out of body experience. I can't guarantee my behavior. I can't guarantee what's going to come out of my mouth. I can't guarantee what I'm going to do with my body. And I'm a 41 year old woman, so I've had a while to work out that when I need to get out of there, I need to get out of there. And you know, I have a toolkit.
(11:24):
Children don't have that, and they don't have, they're not afforded the right to autonomy either. So if you take, as an example, an autistic child and put them into a classroom, and you as a family have taught them, this is okay to do when you feel like you're going to have a meltdown. You ask the teacher if you can step out or you grab, like what I'm using right now, um, a fidget or whatever it is.
(11:56):
Sometimes the children are going to be in a situation where other adults are not going to allow them to employ or implement tools that they need to to be okay because their reference point for understanding behavior is aligned with predominant neuro ties, which is a child who yells and screams and thrashes about on the floor. He's have a tantrum, or is being a brat. I don't believe there is such a thing. I don't believe there is such a thing in a neuro divergent child or a non-neuro divergent child.
Kieran Rose (12:35):
Yeah, and I, it's, it's funny, because I was gonna bring up meltdowns, actually, and this correlation that there's a societal ideal that a meltdown is a tantrum, that the, the two are synonymous, that there's no distinction between them. And unfortunately, I do see many parents that think the same as well, but quite often, when you dig into what they're thinking is, they don't actually think it. It's stuff that they've picked up from teachers, peer pressure, societal pressure, all of those kind of things, and-
Kieran Rose (13:03):
Teachers, peer pressure, societal pressure, all of those kind of things. And quite often, what's really, really common is, "I took my child to the supermarket and they had a meltdown. Everybody was looking. People were totting. And they were giving me," ... And automatically, especially in parent groups, when you see someone post something like that, automatically, the first response is usually, "Oh, I'm so sorry for you. That must've been embarrassing," and, you know, "Why don't people ... why don't people just accept," and stuff like that. And actually, you're thinking, there's a child having a trauma response in the middle of the floor, and who's getting the attention and who's getting that, "Oh, I'm so sorry." It's the parent who is embarrassed by other people totting, you know. There's an argument to say if your child's prone to doing that, don't take 'em to the supermarket in the first place. That- that- that would be the first thing. Like I would never ever take my children to the supermarket unless they wanted to go.
(13:46):
But secondary to that, the child's kinda forgotten in all of that as well. And it's kind of ... Sometimes it's picked up on a bit later. And I think that's why lots of autistic people on the internet struggle with the parent narrative because, you know, that's not the parent's fault that they're receiving attention for what hap ... They're the ones that posted. They're the ones that are looking for a bit of support. And rightly so. They deserve a bit of support. Because it is embarrassing and it is awful when people are judging and totting and stuff like that. But the child is forgotten amongst all of that. And if they are remembered, it's usually, "Oh, they're in sensory overloads," or, "They were misbehaving," or whatever. And it's diminished and undermined that they're actually traum ... It's not a controllable response.
(14:29):
What you were saying before, it's the same for me. [inaudible 00:14:32] so I struggle to recognize when I'm getting to the point near a meltdown. Now, I've got things in place that can remind me. And if I'm around people that I know, generally, like my wife and stuff like that, they'll pick up the signs that I am anyway. I might always not always believe them. But there's usually some kind of physical thing that I can connect to to think something's not right so I need to remove myself. But you're right, children don't have that. And especially if they're [inaudible 00:14:59] it's really difficult then for them to even be aware that they're getting anywhere close to melting down and losing control.
(15:06):
But when you do have that moment, it is not a behavior. You are not choosing to do that. It's not something like, "I'm stamping my foot because I want a sweet, and when someone gives it to me, I will stop." That's a tantrum. That's manipulative. That's a child doing something to get a response. But a meltdown is just an uncontrol ...
Kristy Forbes (15:25):
Yeah.
Kieran Rose (15:25):
Your head's ... your brain's popped, and that's it, you're gone. And quite often, there's kind of two trains of thought in terms of many people say it is a kind of out of body experience; you're aware of what's going on, but you've got no control over it. It's a bit like helicopter viewing yourself and disassociating. But other people don't even remember. [inaudible 00:15:43]. And then they open their eyes, and there's just this devastation around them, and they don't even know what's happened. And that in itself is traumatizing as well.
(15:51):
But again, it's like if a school ... You know, oh, you've had a meltdown. Well, go out of the class for 10 minutes, and then we'll bring you back into exactly the same environment where nothing's changed. And then they wonder why it triggers again. It's- it's just so pathologized.
Kristy Forbes (16:05):
It is. And going back to the supermarket example you gave, I think what's really difficult there too is for families, when they're in that situation, or when we're in that situation and our child is behaving in a particular way, it takes a lot of consistent practice and working on ourselves to get to the point where you don't feel bombarded by societal pressure in that moment to turn on your child. And I know that so many parents would experience that in the moment where they feel this unspoken and pressure from the energy of people around them looking and totting and eye rolling and staring. And so in that moment, particularly autistic parents or unidentified neuro-divergent parents who are vulnerable, are likely to go along with the status quo. I mean, I know that was me for a long time. And feel really annoyed with our child for putting us in that position. And then we get in the car and turn on ourselves and feel awful all the way home and live with that forever. You know, that we knew it wasn't their fault in that moment. We knew what was going on. But the- the compounding energy of judgment in that moment forces people to respond in ways that they don't want to respond.
(17:36):
And I think a huge part of that problem is, again, that society just doesn't know enough-
Kieran Rose (17:44):
Yeah.
Kristy Forbes (17:45):
... understand enough about our children and how they respond to people, places, and things. And adults, when we're adults, we get to choose. We get to say, "I'm not gonna do that thing because it causes me to feel A, B, or C." Or, "Actually, I don't do that because it's not for me," or, "I really am very challenged in this area, so I try not to put myself in that position." Again, children don't ... they don't have self-awareness until ... I mean, non-autistic children are usually at least six years old before they start establishing that sense of awareness. And we're on our own timeline of development as autistic parents, so it takes us longer than that. They don't have the communicative skills, particularly if they're non-speaking or situational mutism. Or even if you're hyper-verbal, we still struggle, under moments of stress and de-stress, to communicate. We can't say, "I'm feeling nervous. I'm feeling anxious. I want a break. I need to leave." It's gonna come out like, "I want to go home now," after no warning sometimes. So those times where we expect children to be able to tell us that they can't do something, they won't be able to do something, that this is too hard or they need a break, it's actually unreasonable to expect our children to be able to do that.
Kieran Rose (19:15):
Then it gets wrapped up and painted as challenging behavior.
Kristy Forbes (19:18):
Yes.
Kieran Rose (19:19):
Blame is focused on the child in that regard. I was doing an online conference earlier in the year. And one of the speakers was ... Really struck me, actually. Was talking about a memory that she had from childhood where her parents had taken her to the seaside. And as they got onto the beach, it was like a vast, expansive beach. And the sea was like quite a way away. And they'd walk down. And she said there was this chair, this wooden kitchen chair, like a dining table chair, just sat at the shoreline, literally just sat there. And she said she didn't know whether it was the light coming off it, the shadow, or the fact that it was completely out of context that there was a chair there, but she said she was terrified by this chair. Absolutely was distraught over it. And she melted down. And it went on and on. And her parents couldn't figure out what was going on. And she couldn't communicate it.
(20:04):
And it got to the point where her parents just basically picked her up and they went home. And she said what always stuck with her was her dad saying, "You spoil everything." I wake up sometimes in the middle of the night, and that line is there in my head. But it's so true. From the parent perspective, who's not understanding their child, yes, the child is spoiling everything. But from the child's perspective, she was scared. She was in trauma.
Kristy Forbes (20:35):
Yeah.
Kieran Rose (20:35):
And the parent didn't recognize that, and invalidated her, undermined her experience. Yes, maybe took her away from the experience. But there was no explanation of what was going on. There was no conversation about what happened. It was purely seen as bad behavior. And that ... You know, and then in modern context, as I said earlier, this is now called challenging behavior. And when stuff like this happens in schools and in homes, this is where we're talking about restraint and seclusion and isolation booths and these punitive punishments that children are now put through, children and young adults are put through, because the people that have power over them have no context for what's happening, so they just make assumptions based on their personal bias.
Kristy Forbes (21:22):
Yeah. Gosh, that brought up some stuff for me.
Kieran Rose (21:27):
(laughs) Sorry for triggering you. We should've-
Kristy Forbes (21:28):
No.
Kieran Rose (21:28):
... put a trigger warning at the beginning of this.
Kristy Forbes (21:32):
No. Just brings up memories of actual teachers at high school knowing that I would not be able to respond or react to particular things, and using their power to bait me or to antagonize me. And then if I reacted, I would be sent to the principal's office, and I would be punished. And that's not me not taking responsibility. That's me saying I was a neuro-divergent teenager with no coping skills because I didn't know I was neuro-divergent. Nobody did. And they really do exist, educators and adults in many fields out there who take advantage of that.
(22:18):
So I think, as families, it is really important that we honor our children's neuro-divergence and arm them with language, even if we're teaching them to script. You know, I did this growing up, naturally, actually. I knew that there were particular situations that I would have trouble moving through 'cause I might freeze. I might become mute. I might become aggressive. And got to know particular situations that I was challenged by. And so I would have written down responses that I could use. I would script responses.
(22:57):
So it's important for us to be aware of that for our children as well. I mean, it's sad that we have to prepare our children to go out into a world where they won't be understood. And- and you and I talk about this. We always mention this because this is so important. We are privileged. Our privilege is that we are white. And us talking about the difficulties of us sending our children out into a world that doesn't understand them has got nothing on other people lik the Black autistic community, so many other communities, pockets of the autistic community, who have so much more to deal with than we do when we're sending our children out into the world that doesn't understand them.
Kieran Rose (23:39):
It's terrifying when you look at the diagnostic rates amongst, uh, particularly the Black community, of not just that they are missed for being autistic, but actually the things that they're di- diagnosed with are literally things around challenging behavior. It's like it's an expectation that Black children are acting out and are being defiant. And it's horrifying. The rates of diagnosis of things like oppositional defiance disorder and stuff like that amongst the Black community are huge and out of comparity with autism diagnosis and ADHD. I think ADHD is a little bit more prevalent. But the disparity there is ridiculous. And it is around this societal notion of it's racism. It's blatant racism that if a child is act ... if a Black child is not doing what they're supposed to be doing, if they're not conforming, then that's negative, that's bad behavior. And you can see how that travels through into adulthood and things like that, and then rates of arrest and police profiling people and stuff like that. You can see how that happens. It's obvious to me how that happens. And it all comes down to blatant racism, at the heart of it, that they're looking for behavior and seeing it deliberately as negative.
Kristy Forbes (24:51):
Yeah. My goodness.
Kieran Rose (24:56):
Got 30 comments.
Kristy Forbes (24:57):
Oh, yes. Please tell me.
Kieran Rose (24:59):
You forgot we were live, didn't you?
Kristy Forbes (25:01):
Did I? Yeah, a little bit.
Kieran Rose (25:01):
[inaudible 00:25:03].
Kristy Forbes (25:03):
Lucky I didn't pick my nose or anything.
Kieran Rose (25:07):
(laughs) Joe says, "The medical model of autistics and PDA needs to be bent."
Kristy Forbes (25:11):
Yeah.
Kieran Rose (25:12):
Absolutely agree with that one.
Kristy Forbes (25:13):
Yeah.
Kieran Rose (25:14):
[inaudible 00:25:14] says, "Normalcy is a social construct that is ever-changing, and is also an unattainable myth, yet we are seen as abnormal as we don't meet this imagined normal yardstick."
Kristy Forbes (25:24):
This is why I hate social skills training 'cause the goalposts-
Kieran Rose (25:26):
Yeah.
Kristy Forbes (25:27):
... change all the time. It's so elusive.
Kieran Rose (25:27):
Yeah.
Kristy Forbes (25:29):
Definitely. And what Joe was just saying, it's something I thought about before. 'Cause you do not identify as PDA autistic, I do. And I think too there is, and I am gonna talk about this because I think it's really important to talk about, there are people in the autistic community that refuse to accept that PDA is a thing or that it exists. And when we're talking about behavior and presentation, expression, autistic expression, the thing about a child ...
Kristy Forbes (26:03):
... exploration, autistic expression. The thing about a child who has a PDA expression of Autism is when they, uh, behave in the, the way they are, which is different to a non-PDA autistic. And for those aren't aware, PDA stands for pathological demand avoidance. The anxiety is so extreme that I say to families, when a child is swearing, grabbing knives, whatever they're doing, no matter how extreme the behavior, that's a panic attack. That is a panic attack. And yet we keep calling it aggressive behavior or challenging behavior or problem behavior or concerning behavior. And yes, okay, it's all those things, but there is always something underneath that. And we know for PDA autistics, that anxiety is extreme. That is panic. When a person feels so out of control that they're grasping for those things, that's at the heart of a panic attack.
Kieran Rose (27:03):
Yeah.
Kristy Forbes (27:04):
Sorry, continue.
Kieran Rose (27:06):
No, no, no, I agree completely. I think it's a really important distinction. Bec-, we haven't done any public talking about PDA, really.
Kristy Forbes (27:13):
Mm-hmm.
Kieran Rose (27:13):
And I, probably at one point would have been tarred with data, I believe in PDA kind of brush. But it's never been about that for me. We've talked heavily about this, Christy, haven't we? And it's always been about the narrative around PDA and how misunderstood and how the public narrative of PDA is very different to the private narrative of PDA. And, if from an outside perspective, that's really confusing, and I can see how people have made leaps of, "Well, PDA just doesn't exist, because you're describing my experience." But that's usually because there's a lot of context missing from that experience as well.
(27:45):
And I think, so the conversation about behavior is so important, because although the world pathological is in the name of PDA, behavior of PDA is really pathologized, overly-pathologized as challenging behavior. And really, again, we're talking about extreme anxiety, trauma, all of those kind of expressing in a different way. I mean, in the UK here, there is an organization called the Challenging Behavior Foundation. And there's this whole narrative around violence against parents.
(28:15):
And that's not to say that that doesn't happen. That it does happen that parents have been attacked and things like that, but it's taking away from the whole trauma response of what's happening and the anxiety response of what's happening. And it's focusing on the parent as the most important one in that situation, when in actual fact, quite often, usually, sadly, the parent is very much involved in why that situation happened and the negativity and the lack of understanding and all those things. And I've often said that parents are out of a school environment or out of a work environment, our families are usually our biggest triggers, especially when they don't understand what's going on. That's not their fault. That's because they've been fed narratives that cause misunderstanding, and it's such a complicated beast. And nobody really is to blame for it.
(29:08):
But if you're going to cast blame anywhere, it's the gatekeepers around narratives, professionals, charities, people with power, people who have the ability to change things but don't. And I think that's where all these narratives get bottle-necked behind money and people holding onto their theories and all of that kind of thing. And then at the bottom of it, is us and our families who get impacted the most but get the least proper support. So, that was a lot of unpacking that, wasn't there?
Kristy Forbes (29:38):
I did, this was interesting. I want to say this, and I won't be specific for legal reasons. But, so I was contacted to buy a television station in Australia who are doing a program on ADHD soon, and I shared my experience, and they came back to me and said, "We hope you can understand, but we're actually ..." Basically what they said is that they are prioritizing people who don't know as much about ADHD as I do ...
Speaker 1 (30:08):
[inaudible 00:30:09]
Kristy Forbes (30:09):
And ... Yeah, yeah. Which is so bizarre, and I was like, thinking, and I'm going to respond to them, and all I was left thinking was, I really, really hope ... but I just had this gut feeling, that this is what it's going to be about. "We're going to have a television program again, an open discussion or forum about your diligence. We're going to get a group of people who identify or have been diagnosed with ADHD in this situation who don't know much about it. We're going to have them there, and then we're going to have medical professionals who are going to do the telling and the talking about ADHD while these people are going to sit there and just agree with them and go along with it. It's going to be painted in a really negative light ...
Kieran Rose (30:57):
Mm-hmm.
Kristy Forbes (30:58):
... and that makes me feel really cross. It makes me feel really cross. Not because ADHD is wonderful and rainbow-y and we should celebrate it. It's not that. It's that we are telling people that they shouldn't be celebrating who they are. We are telling people who they are. We are telling parents that who their children are is problematic and needs to be fixed and changed.
(31:25):
The language that we use, early intervention. We keep having this burden, challenging behavior, broken family, divorce rates, negative narrative perpetuated by the media. The media are to blame for so much of what society thinks neurodivergence is. Because when we think about images of autistic children: children trapped behind glass walls. ADHD, children who are on commercial television currently, a program it's ripping the phone out of their parent's couch cushions.
(32:06):
And you know, it's not about them coming back and saying, "We want you to be a part of this, but we're only going to ask you if we can't fill the spots for the people aren't self-aware or who have a negative narrative about their diagnosis. That's problematic. That's discriminatory, it's ableist. It's so wrong.
Kieran Rose (32:27):
It's also controlling.
Kristy Forbes (32:27):
Extremely controlling.
Kieran Rose (32:30):
Wh-, what you've described there is basically a TV program that says this is the narrative that we want to project, and we're going to exclude people who don't fall into that narrative. But that's not an honest portrayal of anyone who's ADHD. It doesn't, it's not representative at all. It's just, literally, a controlled narrative, which confirms the negative narrative around ADHD, as well. It's confirmation bias creating more confirmation bias. That's what was happening there. And that's disgust- And people will make money off the back of it. It's like the Netflix show, the relationship thingy ...
(33:01):
I haven't watched it yet, and I deliberately haven't watched it, because I read a few reviews, and I thought, "I know exactly what this is. I've seen it before."
(33:08):
Even things down to, like, this plinky-plonky music when the autistic people come on the screen. And, you know, it's a dating show. So let's get their parents in and talk about their sex lives. You're like, you don't have that on ...
Kristy Forbes (33:22):
Around [inaudible 00:33:25]
Kieran Rose (33:25):
... normal dating programs do you? No neurotypical human being would go on a dating show and let their mum and dad talk about their sex life. So why is it okay for it to be about us?
Kristy Forbes (33:35):
Yeah, they infantilize their subjects, and they are subjects.
Kieran Rose (33:40):
They are. They are literally specimens in a jar that people are observing. That's what's happening there. There's nothing good or right about it. There's no reality, it's not reality television, because there's no reality to it. It's contrived and controlling, and that's, that's the kind of thing-
Kristy Forbes (33:55):
And it scars this thing inclusive and it is exploitive. And the worst part about it ... I mean, it can't be the worst part about it, because there are so many things about it. The, the dating expert was a non-autistic coaching autistic people how to date, and I watched the reactions from the people on Gogglebox, watching the autistic people dating, and it was a whole lot of, "Aww, they're cute." So infantilizing. Really, really awful. Really awful stuff. Anyway. Well, yeah, go to the comments.
Kieran Rose (34:31):
I sometimes wonder if we are constantly mildly traumatized because of our sensory difference in living in a world not designed for us.
Kristy Forbes (34:38):
Yes.
Kieran Rose (34:39):
Yeah, I'd agree with that. I think that the increased focus on CPTSD is so, so important, because we suffer micro-traumas constantly, pretty much every minute of the day is a micro-trauma, especially when you are around other people that are not autistic. We could be seen as being quite disparaging towards non- autistic people, but quite often it's an unwitting process that happens. We're invalidated, undermined, our needs are dismissed, our sensory needs are dismissed. And especially when we're children, what you were saying earlier about, you know, like, "I need to get out of here." The most common response to that would be, "Sit down and shut up. You'll be okay. It's not that bad," you know, "Don't worry about it. It will get better." And that invalidating when you are someone who is in a sensory responsive pain or overwhelm or something that somebody else can't hear or see or touch, just because they don't see or hear or touch it, they dismiss it, because they've got the power and you haven't, as a child. And we don't teach our children to say, "No." That's a really, really important thing.
Kristy Forbes (35:45):
We especially don't teach our children to say, "No," when we engage them in behavioral-based therapies ...
Kieran Rose (35:49):
Yeah.
Kristy Forbes (35:52):
... compliance therapies, because the whole premise of those therapies is to change a child's, "No," to a "Yes."
Kieran Rose (35:59):
Yes.
Kristy Forbes (35:59):
To punish them if they don't go along with what the therapist wants them to do. So that's a good start, to look right in there. Uch.
Kieran Rose (36:08):
Leah Black: "When my daughter was first diagnosed, I was so baffled by the fact that these professionals were telling me her cute little child stims of flapping, twirling, etc., were abnormal. It literally blew my mind. How is a behavioral reaction a lot of people do abnormal? I understand now, but at the time I really got hung up on it.
Kristy Forbes (36:27):
Yeah.
Kieran Rose (36:28):
Again, it's that invalidation. It's absolute invalidation of human behavior, just because it looks a little bit different.
Kristy Forbes (36:37):
It's such ignorance. Inside of ableism is classism, racism and genderism. That's why we say autistic rights are human rights.
Kieran Rose (36:47):
I've just read a comment, and I got really offended just for a second, and then I reread it and realized I'd read it wrong. Chantel says, "I'm in a relationship with an NT. We aren't doing too bawdy," and I thought she was talking about me, just for that moment, but I think she means badly (laughing). There was a flare there of, "You will not criticize my head." But it wasn't my [inaudible 00:37:09] top or anybody else's. (Laughing.)
(37:13):
Jennifer: "I feel so bad. We thought our 13-year old had anxiety. With anxiety, you work with clients to push through their fears, so you want to help expose them to their triggers. That has just been our approach. We are just learning now to stop. His main trigger is getting into the school buildings. We used to make him push through upsetting environments. Anyway, we had an idea years ago that he was autistic, but he presents like he's not autistic. He finally has been diagnosed, and I feel we were so blind on how to love him better. We've traumatized him by treating it like anxiety and defiance. What can we say to help besides apologize and change."
Kristy Forbes (37:44):
Oh, oh, my heart goes out, because, I, I was that mum. I had my children in APA therapy, and in another life was a trained APA therapist. So, look, I was very controlling and made so many mistakes with my children, and you know, I think it's beautiful that you've been able to recognize this and learn this. A lot of families don't. And I think it's so wonderful that, as a family, you now have the opportunity to make amends and move forward.
(38:15):
And I think sometimes it, I don't know whether there needs to be a sit-down apology, but it's in our actions, as well. We can be sorry, and we can say sorry, but I think moving forward we do differently and, I mean, it sounds like that is happening. And that, that makes my heart expand so, in my chest. I know it's sad for the person who's written it. What was their name? Sorry.
Kieran Rose (38:42):
Jennifer.
Kristy Forbes (38:42):
Jennifer, we are all products of the environment we're in as well. We're all doing what we believe is best at the time with what we know and what we have. And when we're surrounded by ... You know, we move in circles where we're told to, to push our children. But that's a basic human thing, isn't it, Kieran? I mean, at school. If you can't do your shoelaces up or-
Kristy Forbes (39:02):
Thing isn't, Keiran? I mean at school. He can't do his shoelaces up or you can't do something you're told to try and try. So we think we're doing the right thing. So I think intention is everything. And I- I think it's very lovely that you can now move forward as a family and do it differently.
Kieran Rose (39:17):
Yeah I think it very much depends on what your child is like in terms of whether they might need an apology. That might help them. I apologize to my children a lot when I do something wrong because it's an equality thing. I don't see a hierarchy in our house. I mean there is to an extent, obviously, 'cause I'm a dad and they're a child. But I take ownership of my mistakes. I feel for my children it's really, really important that they see that I own my mistakes. Whether that's with them or with others.
(39:43):
But it doesn't necessarily need to be a kind of that you have to subjugate yourself or anything like that. I just think it's important that through positive action and new understanding that you all talk together moving forward. We realize that we made mistakes, we're not going to make those mistakes again. That doesn't mean we won't make mistake in the future, but we're gonna do it together and we'll work through it together. And I think that makes a really strong family unit.
Kristy Forbes (40:08):
And it's an ongoing, evolving-
Kieran Rose (40:11):
Yeah.
Kristy Forbes (40:11):
... family conversation. Sorry, I just realized that it sounded before like I was saying don't bother apologizing just show it in your actions.
Kieran Rose (40:19):
(laughs)
Kristy Forbes (40:19):
What I was saying is not just apologizing, but also-
Kieran Rose (40:25):
Yeah.
Kristy Forbes (40:25):
... being consistent with, you know, change.
Kieran Rose (40:28):
Yes. What's the best advice you can give a parent whose child may receive an AS, an autism, we don't really do ASD, uh, on our channels. But, you know, that's just a language thing. Um, ADHD diagnosis. I wanted to do one for my son who's eight and our family. I'm really enjoying learning from you and I empathize with Jennifer about anxiety. Best advice we can give a parent who may received an autism or ADHD diagnosis?
Kristy Forbes (40:53):
Yeah. So if we- we might just explain why we don't use ASD. And for me, that's because the D stands for disorder. And we say that with gentleness and absolute respect. I think it's just more culturally respectful towards autistic people if we use language that doesn't imply-
Kieran Rose (41:15):
Yup.
Kristy Forbes (41:16):
... disorder in the way we're saying.
Kieran Rose (41:18):
Yeah. This is Sarah that's made the comment. So just to explain, when I was reading that, you saw me trip over my words when I got onto that point. And that's literally because I stopped and was like, I can't even say that because it's triggering for me. So things like ASD, D stands for disorder. C, condition, in clinical terms condition and disorder mean pretty much exactly the same thing. It's all othering, it's all negative and it's all pathological terminology which does not describe who we are. We don't have a condition, we don't have an illness, we don't have a disorder. This is a neurological difference. And that brings with it strengths, weaknesses, challenges, not so many challenges, varies from person to person.
Kristy Forbes (42:01):
For you maybe, for you maybe. Speak for yourself, I'm pretty much perfect. I could probably lose me diagnosis if [inaudible 00:42:12]. (laughs)
Kieran Rose (42:11):
To go back to Sarah's question, best advice you can give for someone who's got a child that's probably gonna be diagnosed?
Kristy Forbes (42:17):
First thing, connect them with autistic mentorship and peers. We often hear professionals saying to immerse your autistic children with non autistic children to learn social skills. However, that others them. And amplifies their difference. So if I imagine, if you can imagine being an autistic person and only having non autistic people around you, it really accentuates how different we are. And if we don't have peers to be able to relate to, we begin to believe that there is something wrong us. So for many of us, it's not until we form or find community with our autistic peers that we feel normal for the first time in our lives.
Kieran Rose (43:01):
Yeah. Yeah. And be very careful about social skills narrative as well. Because it's designed to normalize us, it's designed to make us appear not autistic. It's designed to make us fit in which for some perspectives that might feel like a good thing. But it isn't necessarily a good thing. It's really important for autistic kids and ADHD kids to understand why non autistic and non ADHD people are behaving the way that they are. So just to understand that narrative of why they do the things they do. But it's really important that they don't take that narrative on for themselves and feel like they have to act that way, or are made to act that way. Because they have their own way of socializing.
Kristy Forbes (43:40):
Yeah and the other thing about having a child identified as autistic is there goes everything you think you know about parenting in order to be open to a completely new experience.
Kieran Rose (43:53):
How do you pish back against people who think that it's just bad behavior or bad parenting and want to deny a diagnosis?
Kristy Forbes (44:00):
I think this is a process. I think there's a starting point. And that is we sit with the discomfort within ourselves because a lot of the time it's about us being uncomfortable with being disapproved of. Feeling like we will be isolated or an outcast if we don't take on board everything everyone else is saying. And I think it takes practice and somebody was asking me inside the members site the other day, for ITAS, how do you get started? And I often say to families, just by repeating yourself.
(44:33):
So if I were to say to you, Keiran, oh we don't speak about our children in their presence. And you continued to do so, I might feel terrified inside and full of anxiety, riddled with anxiety. But I would slow down my breathing, and I would say we don't speak about our children in their presence. And if he continued to do it, I would continue to repeat myself. Because then it would just get awkward and weird and embarrassing. So I think repetition and like I was saying before, sometimes we can have scripts. We can sit down in a safe space, on a weekend or something, you know, have a really good think about what would feel comfortable in terms of responding to those people. And having a script and practicing it.
(45:23):
But also over time with practice, what happened for me was it strengthened my relationship with myself. So I started to feel more confident and more empowered. And also knowing in the back of my mind that my loyalty is with my child. I am their parent, their guide, their protector. And so I'm modeling to them as well how to self advocate. So when they see us doing that, they learn to do that for themselves.
Kieran Rose (45:54):
No, I completely agree with that. It's that shift between, um, as a parent advocating for your child, and the child advocating for themselves. And that transition's really, really important. That doesn't mean that there will come a point where you're not needed, because as a parent, children always need their parents. Even when we're grown up we still need our parents. And we still need that support, and that love. And sometimes we do still need them to talk on our behalves as well.
(46:16):
But what Christie said about repetition, reinforcement, but also knowledge as well. Knowing your stuff. Going out and finding information which is useful to us and pertinent to you so that you're confident enough to be able to say it and say it with authority as well. And all those things do come with time. You can sit here and say, oh we just stand up to people. But it's not that easy, it really isn't that easy. And especially because of power dynamics. Again, this isn't just neuro divergent people. So many people fall when they're in the presence of professionals. Because we've been conditioned to accept what they say because they're experts. So-
Kristy Forbes (46:49):
Yeah.
Kieran Rose (46:49):
You kind of, you become a child and they become an- an adult. So it's really, really, important to just arm yourself with as many tools as possible and just keep gently pushing, and gently pushing, and gently pushing. And it will come, it will change.
Kristy Forbes (47:01):
And another thing for me was with school or with kinder or daycare, it we arrive to collect our girls and their educators would straight up say, oh this happened and this happened. I kind of nipped that in the bud by saying to them in private, when I arrive to collect the girls, I would really appreciate you speaking positively about their day in their presence. Here's a communication book. Anything else goes inside the book. I take it home and I read it in a private moment and I chose how to address that with my child.
Kieran Rose (47:38):
Yeah I completely agree with that. I think that's so important. I mean even putting aside the not doing it in front of your child and things like that. But that also give you time to go home and process it.
Kristy Forbes (47:50):
Yes.
Kieran Rose (47:50):
And to think about the context in which it might have happened to frame a positive response back. Because when you are told things like that on the spot, your child did this, this, this, and this today, they've been really naughty, they were really negative. Again, it's that power dynamic, you do become the child at that point, or you become defensive. Usually one or the other.
Kristy Forbes (48:08):
Well it's not celebrating who the child is.
Kieran Rose (48:11):
No.
Kristy Forbes (48:12):
It's having a primary focus on what gone wrong.
Kieran Rose (48:17):
And in the process of doing that, disempowering both the child and the parent as well. It's completely messed up.
Kristy Forbes (48:23):
I was about to say it'd be like my husband coming home from work and walking in the door, and I tell him all the things he's done wrong. Like you didn't take the bins out today, you left your dirty socks next to the bed. But I do, I do do that. I'm guilty of it.
Kieran Rose (48:37):
(laughs)
Kristy Forbes (48:38):
Right, we might need to finish up soon.
Kieran Rose (48:41):
Let's finish up then. (laughs)
Kristy Forbes (48:43):
I'm not being very professional. Sorry everyone.
Kieran Rose (48:46):
Thank you very much, everyone.
Kristy Forbes (48:48):
Bye.
Kieran Rose (48:48):
Bye.
