Kristy Forbes

I thank the Universe for the Autistic community - Series 1, Episode 7

In this episode of Queers & Co., I’m joined by autism and neurodiversity support specialist, speaker, writer and creator of inTune Families, Kristy Forbes.

We chat about embracing autism as an identity and culture rather than a disorder, moving away from pathologising behaviour, the importance of being able to self-identify as neurodivergent, the deeply problematic nature of compliance therapies and radical honesty as a form of self-care.

CW: This episode contains talk of ABA and compliance therapy

If you haven't already, be sure to join our Facebook community to connect with other like-minded queer folks and allies.

Find out more about Gem Kennedy and Queers & Co.

Podcast Artwork by Gemma D’Souza

Resources

Follow Kristy on Facebook and Instagram

Find out more about Kristy and her work through her website inTune Pathways

Find out more about Amy Sequenzia via her blog and at Ollibean

Kieran Rose aka The Autistic Advocate’s blog

Tickets for Kristy’s upcoming PDA Perspectives tour are available here

Full Transcription

Gem: Hi Kristy, how are you? 

Kristy: I'm great. Thank you so much for having me. 

Gem: Thank you for being here. I'm really excited. So we've known each other for about 18 months because my family did some work with you. And, and I guess it would be really cool if you could introduce yourself and what kind of work it is that you do?

Kristy: Yeah, sure. So I'm Kristy Forbes. I am an autistic person. I support neurodivergent people and their family. I work in private consultation online, with families because some of them are at crisis point and can't leave their homes. I offer education around the lived experience of autism to allied health professionals, educators, parents. And I also write and I speak about autism.

Gem: Great and what has your journey been to get to doing all these things? I know you say in your work that you were diagnosed at 33 as being autistic but obviously it's been quite a journey to get to the point of actually being a full-time advocate and doing that as your main focus. 

Kristy: Yeah. Oh gosh, what a huge question. It's been one hell of a ride really. When I came into this work, I already had a background as working as an educator in early childhood and primary and secondary schools. And having no clue I was autistic, knowing I was different but thinking there was something wrong with me. So I knew something was going on. I worked in the field because I worked with families, with children who had social emotional and behavioural challenges. So when I came into business for myself because I have four autistic children, and it became difficult for me to work for other people and raise my children and care for them. I kind of hid behind the whole childhood behavioural specialist title. And I didn't tell people I was autistic, and I had been diagnosed by that stage. I still didn't really know what that meant for me so it was something I was still unravelling. But then after some time, I would just see so many things online about autism and just cringe inside and go, "Oh, my God! No, no, no, we have to start talking about autism differently. This is not okay for non-autistic people to continuously observe behaviour, focus on physical expression and then translate it in comparison to theirs, and think that that's enough." I couldn't cope with it anymore. I'm autistic, I couldn't stay quiet for long. So I wrote this post one night, outing myself, and talking about how painful the journey has been and then I deleted it. Then I posted it again and I thought, "Okay, I'm just going to leave it for 10 minutes and see what happens." And I could not believe it, the people just came. The people started to come and they were like, "Oh, my God, yes!" It's because of my community that I've been empowered to stand in my truth and have this voice, and it's just crazy to me. It's surreal to me. 

Gem: And how long ago was it that you put that post up?

Kristy: Two years ago.

Gem: Okay, wow.

Kristy: So it's all happened very, very quickly. And honestly, there's no such thing as a comfort zone for me anymore. It's just constantly – as soon as I get a bit comfortable and go, "Oh yeah, this is nice and cozy now." Someone comes along and goes, "Can we talk about this?" And I go, "Oh my god, how confronting but yes, okay. Let's do it."

Gem: I relate to that so much, that like, "Oh, everything's okay, I can do this." And then oh my god, no, I can't!”

Kristy: I know!

Gem: And, something that I just wanted to, two things actually, that I wanted to share from your website and from a talk that I heard you do. The first thing was that you embrace autism as an identity and a culture and you don't view it as a disorder. And I just think that is such a powerful statement because for us as a family as soon as we experienced that, like, as soon as we knew there were other people out there that agreed that that was a way of being, it was completely life-changing and felt so much less isolating. When everyone thinks there's something wrong with you, or that needs to be changed in some way. Yes, huge.

Kristy: It's everything. It's everything. And actually, it makes me really angry, to be honest. It makes me really angry that we live in a society that just consistently pathologises human beings, and that goes for all cultures and all identities. It goes for race. It goes for gender diversity, everything. The labels that autistic people have put on them, like rigid, black and white, I mean, "Hello. We're not giving ourselves these labels other people are," and then they stick to them for 70 years and have the gall to say that autistic people are black and white in our thinking and rigid. My community are the people that have these beautiful expanded hearts and minds and accept human beings as human beings. I don't care about how person identifies but everybody else seems to and it's devastating to human beings and the way that they live their lives. And what changes as we move from a medical perspective of autism to actually understanding it for what it is, an identity and a culture, we give people permission to live in their full expression. Because for me, for 33 years, I lived in this world thinking there's something wrong with me. There's something wrong with me. There's something wrong with me. I don't do like everybody else does. I don't think like everybody else does. I don't feel like everybody else does. When I was diagnosed as autistic, or identified as autistic, it was the first time in my life I stopped thinking there was something wrong with me. That I was a broken version of a non-autistic and a whole and complete version of a particular kind of human being. I thank the universe for the autistic community and those people out there who challenged me because there were... The thing about being autistic is that sometimes the way we communicate with each other is quite blunt and quite confronting, and it comes across as rude and sometimes it comes across as mean. There's so much trauma, so much trauma in our community, and in our intersectional communities because people are only just able to start being who they are, who they were born to be now and people are angry. So when I came along as a parent, and believing I was a non-autistic parents of autistic children, and saying all kinds of misled and misguided things, I was challenged by amazing advocates like Amy Sequenzia, who is a non-speaking advocate. At the time, I was devastated and I thought, "How dare you tell me?" but she changed my life. These people changed my life. They helped me to begin my own healing journey and to be able to identify as who I am. So, identity and culture is everything - telling me that I have a medical disorder it's... Telling anybody how to identify or who they are, is not okay. It's not okay.

Gem: Yeah. And that brings me on to, well, a couple of things, actually. But one of the questions that someone in the Queers & Co. Facebook group asked, which was, there's a massive divide between parents of autistic children, who believe that they're neurotypical and potentially not always. For anyone who can't see this which is everyone, Kristy has a wry smile on her face and actually an autistic adults. So this person has said, “I often find that my experiences as an autistic person and minimised and parents have a negative view of us. How can we get more people to listen to our preferences, refer to the autistic community for learning and education, etc?”

Kristy: Yeah. I guess I'm in a unique position because I've been a professional. I'm a parent of autistic children. I'm married to an autistic person, and I'm autistic myself. And I have experienced believing that I was a non-autistic person who was parenting autistic children. The amount of families I've worked with... When you're autistic, you have a radar for other autistic people, like any kind of identity or culture, and I see it all the time. So with the 12 week online program I run, inTune Pathways, many, many parents get to the end of that and go, "Oh, my God". People need to be presented with information about, actually, this is what autism looks like in real life, get out of the textbooks, and talk to autistic people. Because it's so unfortunate that the initiation process, I guess, when a child is diagnosed as autistic, is that usually that's through a paediatrician or a psychologist or allied health professionals who have training, very specific training. There is a process where parents are then referred on to other health professionals. Sometimes they're referred on to therapies that are harmful, sometimes they're helpful. It begins this path of medical pathology and so they're not exposed. Families are not exposed to actual autistic people. Some of them are actually shocked to know that we exist out here and that we drive cars and that we might have a university degree or not. And so I think the divide is so difficult because there's people coming in also with children who might be non-speaking or have higher support needs, and I identify with that. One of my children is very much in need of constant support, and she's not speaking, and then I have other children who are different than that - we're all very different. But sometimes families believe that if we present like me, then that's not the same as a child, and therefore we cannot be autistic and we don't know what we're talking about. And the thing about the spectrum, it doesn't just mean that we all present differently, it also means that we share characteristics, but they look different, and they vary. So just because I'm sitting here, articulating like this, often this is what lets me down because people think that I don't have support needs or I don't have challenges, or I don't struggle in my daily life, because I can speak fluently. And that is so shallow. It's so shallow, and it's such a superficial understanding of what's underneath. People are surprised when adults present like me, and they assume that we must always have been able to speak fluently, and that's not the case. They assume that we didn't engage in behaviours that their children with higher support needs do, and that's not true either. Just like anybody, autistic people grow and develop at different rates and we learn and our brain changes as we grow because we're still human beings. So making the assumption that we've always been the way we are now, it's so unfair. And the information out there about the way an autistic person moves their body or the sounds they make being congruent with their intelligence is so damaging. It's so damaging, because it means that those people that do have higher support needs, whose bodies don't follow the intention of their mind, whatever it is, they are often… their intelligence is completely undermined. So, everybody right across the spectrum, we have these assumptions made about us that are really unfair. And so then we get into this division with parents. There's a lot of trauma in the autistic community. There's a lot of fear and panic in the parent community about their children's futures and their children's lives. And that's because of the information that's fed to them when their children are diagnosed, unfortunately.

Gem: Yeah. And I'm conscious of like, not sharing things that might be not my things to share from our family. But I guess from my perspective, one member of our family went through the diagnosis process in the UK and I actually cried when I read their report, because it was just so... The people who did the assessment are very, they were very nice. They seemed very knowledgeable of what they were doing and stuff, but the pathologising language that was used in the report did not describe the person that they had assessed, or the person that I know, and I really hope that that person never ever reads the report because it's horrendous.

Kristy: Yeah.

Gem: And just seeing that stark difference between, say working with someone like you who is all about support and what does the person need rather than what's wrong with them. What needs to be changed? It's just a completely different way of looking at things. It's revolutionary, really, isn't it? Because you think how many people are just resigned to "Oh, well, it will never be any different or there's something wrong with me," and it's just not the case.

Kristy: Yes, and that's devastating to me. Do you know how many adults I come across who are autistic who… This is how we get to the space sometimes where we have chronic health issues, where we have really poor mental health amongst the autistic community. It doesn't have to be that way. And the information that's out there is, "Oh, this is just normal for autistic people. They have really poor mental health." What rubbish! I mean, let's have a look at the quality of life. Let's have a look at the equity around anybody who is differently in our world. Let's have a look at the way that autistic people are considered. Let's have a look at, just the model of disability. So if we compare the medical model of disability and the social model of disability. The social model really is about well, a person's disability fluctuating dependent on their environment, how are they supported? How much is a school, or a university or a workplace or someone's family? How willing are they to make accommodations for this person so that they can join in, so that they can be active participants in their environment and in their lives? Whereas we seem to stick with this medical model of disability where we go, "Oh, yeah, they're just autistic and everything's their responsibility, and we can't really do anything about that because they have a disorder." And it's so wrong, it's so wrong. And it's not just autism. It's any kind of diversity.

Gem: Yeah, and I think that makes me think of consent when you're living as a family in a consent-based way, and actually sort of negotiating, Okay, well, for example, this member of my family finds this particularly difficult, like loud noises, for example, but then this member of my family really likes going to this place because they're familiar with it. And talking to everyone and understanding what everyone needs in a situation. And yeah, it takes a bit longer, but actually, making sure that people are consenting and making allowances for each other rather than one person wants to go and do this, and everyone has to go and do that. And everyone's going to suffer and it's going to be horrible. But just because that one person, generally an adult, decides that that's what's being done. Whereas when you're actually talking, communicating with your children, what do you need? What can we put in place to make that feel easier or more supportive for you? It's just a completely different way of living. And I think it's not from a place of lack. It's more from a place where we all should be living, consenting to things and expressing our needs, whether neurodiverse or not.

Kristy: Absolutely, and especially in parenting, especially in parenting. 

Gem: Yeah.

Kristy: We have this really unfortunate approach to parenting, where children just shouldn't have any rights and they really aren't seen as human beings. And we sit around thinking that by being controlling and authoritative that we're going to teach our children about boundaries and we're going to teach them how to be confident and empowered. But we're taking all that away from them. So when we give them choice, and when they say no and we hear their no, then we teach them that they're valid and they're important and it's okay to say no. And we also help them to feel okay about accepting no from other people and respecting that. And then - I know with my children I have far less panic and fear around them being vulnerable to people who may take advantage of them because they have strong voices and I do not challenge that. I don't. There's just so much fear in society around, condensing people into these packages and particularly children and again, it’s damaging. It's so damaging.

Gem: Yeah, with that in mind, one thing that people, I guess probably quite often ask you as well is that should they seek a diagnosis if they suspect either themselves or a member of their family is autistic or neurodivergent in any way? Quite often, there's this deliberation period where people are thinking, "Oh, it doesn't matter. I don't need to get a diagnosis." And then maybe they swing the other way and think, "Oh, maybe I should. Maybe it helped me understand things better." What would you say to those people? What do you normally recommend in those circumstances?

Kristy: I always support people to do what feels right for them and what feel safe for them. There's a lot of... This is a really difficult thing to process for people because many people will say to me, "You know, yeah, I do self-identify, but I feel like a fraud and I feel guilty for saying I'm autistic when there are actually real autistic people out there." And I sort of go, "What is real autism? It's not..." Again, the unfortunate thing here is that non-autistic people have gone away and gone. "This is what we observe the most." And they've written down this checklist of what somebody needs to present like, which means that literally thousands and thousands of people miss out on diagnosis who are actually autistic, because they have spent their lives building a mask. They’ve spent their lives in survival mode trying to appear non-autistic, so they're not targeted, so that they fit in, so that they conform. And so even for me when I showed up for diagnosis, I didn't even know and I've been assessed and diagnosed twice. In my first assessment I was masking. So I look back at that and I go, "masking is both a conscious and an unconscious process" It's such a deeply embedded survival technique that some of us don't even know who we are. Many of us have got no clue who we are. And by the time I was ready for assessment, I had no idea who I was; no idea. So I went into that assessment, answering the questions, having the conversations, doing the five hours of cognitive testing, pretending, just pretending and forgetting, “actually, you're being assessed for autism here. You need to drop these masks”

Well, I couldn't, because I didn't know that I was masking. So the issue there with assessment is if you don't check off the criteria, you may not be diagnosed and people have real fears about that. When people get to the point in their lives where they go, "Okay, I self-identify as autistic but I'm terrified to go for an assessment because if they tell me I'm not autistic” and that happens, “how will I feel? What will that do to me?” Because it's such a fragile thing. It's such a fragile process. So yeah, it's such a personal decision and there's so many risks around it. And there's also really great stuff about it. But I can't recommend anything other than people doing what feels right for them when they're ready for it. And I think in the autistic community, we're very accepting of self-identification. Because the process of assessment, you need to have thousands of dollars to be able to do that as well in my country, and long waiting lists and going to professionals who think, and I mean no disrespect when I say this, this is based on experience, think that they know what autism is, and sit with a person whose entire life, everything they’re laying out on the line in front of this professional who has just met. And this professional, it's within their power to tell somebody yes or no about their identity, and that's problematic. That's really problematic.

Gem: Yeah. I've been in situations where other members of my family would self-identify as being autistic but don't have a formal diagnosis and there's almost like an element of disbelief that, neuro-typical people don't believe. They want proof like they want a diagnosis or they want a piece of paper or something. And why can you not just believe? Why can you not trust the person has been through a lot of research, a lot of reading, learning, understanding themselves and how that fits within the autistic community. Why can you not just trust that that person identifies that way because that's how they are? Like as a queer person for example, quite often you're not queer enough or there's some kind of reason why you're not fully that identity. Why can people not self-identify and just be believed and accepted for whatever it is that they identify as?

Kristy: Yeah. And I think that makes the difference between people approaching autism from a medical perspective, rather than an identity and a culture. The only reason you would need written proof around somebody else's identity is if you believe that it's a medical disorder. And it's fascinating to me how many people even for me... Somebody asked me on a podcast once - "And how did your friends and family react when you told them you're autistic?" And I said, “Well, I didn't and I don't know how they reacted, and I honestly don't care."

Gem: Yeah.

Kristy: I know I'm autistic and I don't need other people to believe me or not believe me. And the thing is, it is so gaslighting. It's so sad for someone to come to a space in their lives where they start to put the pieces together about who they are, and to start processing a lot of pain. It's not just this really exciting celebratory event where we go, "Oh, we are autistic, awesome." 

Yes, there is that. For me there was, but there's also a lot of trauma and a lot of pain and sometimes that comes later. I'm eight years away from my diagnosis and I'm now having a little bit of an identity crisis, because then there's all the intersectional stuff. There's all the gender identity, and there's so many parts within autistic identity that you move through and it's a very slow process. And for one person on the outside to come in and go, "Oh, no, I think you're overthinking it." Or, "Oh, no."

Gem: Punch in the face!

Kristy: It's like, oh, yeah, no. I can't even think about it just makes me feel so cross for people, because it happens all the time. Again, everything you read about autism in a textbook is the same as it was 70 years ago; nothing has changed. Nothing has changed, even though we're updating the DSM all the time about how autism is expressed physically, god, we're missing this whole undercurrent of what is in a person's insides? What's in their heart? How do they think? Not just whether they flap their hands a bit or jump up and down; we're human beings!

Gem: Yeah.

Kristy: And so, this is why people look at us and go, "Well, you don't look autistic," because the whole focus is on behaviour.

Gem: Yeah. I've got loads more questions. So I just really want to quickly add to that, that the other thing that people often perceive is that autistic people don't feel things. And, I honestly don't know how autistic people in my experience, I know not everyone's the same necessarily, but how autistic people could feel any deeper. That just is incredible to me.

Kristy: Yes, and I think too, that's fair enough. If we're focusing on behaviour, and how person presents on the outside, I can understand how those perspectives are formed. The thing is, many of us feel so deeply it's painful and we're so sensitive to the energies of other people. And we think about things so deeply. For me, and I can only really speak about my own experience. It's painful and along with the masking over the years is that you develop strategies to survive so you shut yourself off from things. So if somebody passes away, for example, and I'm in a crowd of people - a classic example is when my grandfather passed away last year. He was my favourite person in the whole world and I was with him when he passed. And I had family members there as well. And they were visibly grieving and upset and processing their emotions on the outside and together, and I was stood in the corner, rocking on my feet, trying to regulate myself emotionally. Shaking my wrists as I do, stimming, but nothing, nothing on my face. And while that was happening on the inside, I'm also thinking, "Oh, my God, they're gonna think I don't feel anything," and I'm panicking about that. And I have got anxiety about that. And then I just said to myself, "What do you need in this moment to be okay?" And I said to my family, "Whenever you're ready, do you mind if I have a moment alone with Pop?” because I can't process my emotions in the same space as other people who are emotional. I can't do it. And once they left, I had my moment and I cried, and I did all of that, but I can't do it with other people. That doesn't mean I don't feel anything. It means that other people’s stuff I'm very sensitive to and I take that on. And so I shut down my own experience while in the space of other people, so once they were gone, I was good with it. I could process my emotions but people see that side of me sometimes and think I'm hard, or I'm cold, or I don't feel. But if I could just dip my hand into my heart and pull out the depth and intensity and range of my emotional experience, it's incredible. It's incredible - it's both a gift but a burden, an absolute burden sometimes, painful. So yeah, that is really unfortunate that this is what people think about autistic people. But in saying that there will be people that will be listening and say, "Well, actually, I do relate to not feeling as much as other people." And that is also another expression of being autistic.

Gem: Yeah, absolutely. It's really important. So part of the work that I do is supporting people who are particularly activated around an issue or numerous issues. How do they navigate burnout and burnout is a very real possibility anyway, because of just the energy that it takes to exist within the neurotypical environment. My question is how do you manage navigating burnout whilst being an activist and doing the work that you do as well as being a neurodivergent person?

Kristy: That's a really great question. Well, I try and be as authentically autistic as I can. So reminding myself, you don't have to pretend anymore, you don't have to pretend because I still get into that. When I'm in environments where there are non-autistic people, I will still by default, just go neurotypical and I'll put that mask on. And it's painful to stand still, because I've practised in the last few years, allowing myself to explore my full expression as a neurodivergent person. So now my body is just singing for joy. It's like, “Okay, yes we're steaming. We're doing all the artistic things." So it's more painful now for me to shut that down. So I remind myself, just stim. Just stim, it's okay. You have a website, people see you talking about this stuff, so you can't really hide it anyway which is great; I love that. I love that I’ve outed myself because now I don't have an excuse. So I can't do a lot of the things that people do for self-care. I need a lot of movement. Part of my neurodivergent expression is that I am ADHD as well and I'm demand avoidant, so I don't really get a choice about being unique. I don't follow trends. I don't relate to pop culture. I don't get on board with the same kind of music as other people. So I do things that feel right for me and that takes a lot of practice. So a lot of movement. I walk barefoot in the bush, and that takes a lot of challenging my internalised ableism as well because that's always there in the background. So I'll be like, "Ah, someone's going to see with no shoes on, that’s so feral. But then the joy that I feel, the energy I feel from the earth that moves up through my body and just invigorates my being, I have to allow myself those processes. Not answering my phone when it doesn't feel right. Saying no to people. Limiting, a lot of limiting. But when I say limiting, I mean, letting go of trying to be neurotypical. So when I am working in consultation, I do three in a day and that's as much as I can handle. And for a long time, I was like, "Oh, I should be doing more than that. I should be working really hard." But that's not my ideal. That's a societal thing. And I don't gel with that, that made me mentally unwell for 33 years. It takes this constant, constant conscious process of challenging my internalised ableism. That will always be there. It will always be there. And embracing the weird, and the strange and the different. Asking for help. Holy crap! That has been hard because I want help but I don't want help, because I have this PDA autism expression. I'm very much wanting absolute freedom and independence. It's just a constant process of challenging myself and my thoughts and my feelings and sorting out what's mine and what's other people's; and God, burn out. I know when I'm hitting burnout now so I know the signs. My eyes begin to get dry and bloodshot. My hearing starts to sound like it's under the water. I feel like I've had a few drinks. I think it's taken me a long time to get to that point though, where I know the signs. And the difficulty there is that because I'm autistic, I don't like to be stopped in process. So, if I'm working on something and I've got a hyper focus on, and I start to feel burnt out, I'm like, "No, I have to finish this thing now! No, I don't have time for burnout!” So I'll often find that I'm in burnout because I haven't listened to myself. It's not necessarily other people putting any pressure on me because I've created a life now where I don't have to contend with that. If my kids don't want to go to school and they need a rest, that's what we do. If I can't do something that I've planned to do, I just don't do it. And in all honesty, I don't make a lot of plans because then I feel restricted and then I'll go, "No, I can't do this." So being brutally and radically honest about what works for me, even when I go, "Oh, come on that's weak. Oh, that's embarrassing. Oh, that's weird. Oh, what would these people think," which I don't often ask any more to myself, but allowing myself to really explore and really be radical in what I need and what works for me. 

Gem: Yeah, that's really powerful. And I was going to say I love how you encourage your children to do the same because that's been a huge thing for us. I can't remember if I heard it first in a talk that you gave online or whether it was through your program, but the idea of - we home educate so my children don't have to go to school. So we do already have more space in the week, but there's quite often times where we cancel stuff or we turn up later for things or we just don't do stuff because before I was aware that we were an autistic family, we just pushed like all the time. We've got to go here and then we're going to go there and then this is going to be fun. Just organised, fun, fun, fun; so much fun that wasn't fun. And everyone's just exhausted and pissed off with each other and need some space and just actually listening to that is so useful and it is life-changing.

Kristy: It is, yeah. When I was a single parent, I remember at the beginning of every school year, I'd say to myself, "Okay," and I didn't know I was autistic at the time. "Okay, I'm going to be so much better this year, I'm going to go to the Parent Association, and I'm going to contribute, and I'm going to show up for this and I'm going to show up for that." And the first day of school would come and I'd be riddled with anxiety and I would go along to things and then I’d burn out for days after. And I look at that now and I go, "Oh, parents, you don't have to do that stuff. There are people who love that stuff and thrive on that stuff. Let them do it, honestly."

Gem: Weirdos.

Kristy: I know, right? We need to be apologising to those people, seriously. It's funny I got this newsletter in one of my children's school bags, and I pulled it out this morning and it was this whole letter about, “Oh, you're going to get your ballot papers soon and vote on the PNF Association. I'm like, "Ah, do people really care about this stuff?"

Gem: Some people really do.

Kristy: No disrespect for people that do love that stuff but that's my point. If there are people that love that stuff, let them do it. I’m happy over here in my hoodie, hiding away from the world, just loving my children.

Gem: Okay, cool. So another question that we had in the group was how do we stop autistic conversion therapy such as ABA and other programs that are harmful towards autistic people? It would be great if you could share about that. 

Kristy: By speaking up about it and this was really hard for me to do for a long time. And do you know what? It triggers trauma for a lot of people, it triggers trauma for me. I have this experience of being a parent, before I knew I was autistic, and taking my child to ABA therapy and I did that because I looked for an evidence-based therapy. This is back when I was into the medical pathologising of autistic people. Thought I was doing the right thing. I was taking her along and because she was so young it was “play-based” but then it got to the point where we were beginning to be asked questions like "Is it unreasonable for us to push through when she's distressed?" Now, there's a problem when you're a parent, and you don't know the answer to that question and I didn't. I didn't know the answer to that question. My intuitive process was, this is really wrong and there's something very not okay with this. But I was so disconnected as a parent through the process of medical pathology, through the process of believing that all of these professionals knew far more about autism and my child than I did. And this is another problem with medical disorder syndrome. I would drive home every day sobbing, saying to my husband, “Something's wrong here. Something's wrong, I don't feel good about this.” And I still didn't know what it was, that's how insane it got for me. It only lasted six months, but in saying that, that six months meant that it took six years after that for my child to feel enough trust and safety, that she would demonstrate her intelligence ever again because she'd been exposed to this compliance therapy. And it's still touted as evidence-based - and please can we have a look at what evidence-based is? Evidence-based is when we're building on research that's already there or we're taking information that was already there. This is so problematic. The most common line around compliance therapy is - and it has a lot of names Applied Behaviour Analysis, Behavioural Therapy, so many different names - the most common line is that it will

make your child indistinguishable from their peers. Does it get any more boring than that? Honestly, robotic its robotic, but that's what I wanted as a parent because I was scared for my child's future. The problem here is that the evidence is focused on the behavioural outcomes of these children. Now, if you look further into the future of these children, there is also a body of research, and it's growing, to support the voices of those children that have become autistic adults are still autistic, who have post-traumatic stress from being put into situations where their no was changed to a yes, where they had no rights, where they were made to do the same thing over and over. And if you really want to know about the origins of compliance therapy then you need to go back to the 70s and look up Ivar Lovaas, where it started. And I would recommend you don't do that because it's the most traumatic reading that you will ever do about the treatment of autistic people. And I don't care when people say, "Oh but ABA is not all bad." I'm sorry but if you've created a therapy to change a human being into what everybody else is, enough said, enough said. If we can't just think about that for a second and think about how damaging that is, then there's something very, very wrong here. Supportive therapies over compliance therapies, taking a human being and going "Okay, yes, let's have a look at how they can be supported. Let's have a look at their sensory profile. Can they possibly be helped with wearing headphones or having stim toys or a weighted blanket? Or do they need more rest in their day? Or do they need more movement?" There’s so much more value in supporting human beings to live in their full expression, to have safe and trusting connections with other people instead of taking a child, taking away everything from them, because compliance therapies even involve taking away their favourite things and using them against them in order to get them to comply. And these are often the same families who say, "Okay, but we don't want our children to be exposed to predators."

And my response to that is, " They're being groomed for that." And I know that sounds really confronting and controversial and I, honestly Gemma, I feel so much love and compassion and empathy for these families. And I care so deeply. It's not about judgement. It's not about wanting to tell them what to do. It's about being an autistic person. It's about being a human being. I trained in ABA therapy. I know what goes into it and I wouldn't ever wish that for any human being, especially children. Children, we're talking about children here. This is how we're setting them up for life, teaching them that they can't say no, using their favourite things to get them to do what we want them to do. How are we empowering them by doing that?

Gem: No, it's horrendous

Kristy: It's really, really sad.

Gem: It really is. Thank you for talking about it because I know it’s a really painful thing to talk about. So, with that in mind, you're doing all this amazing work and I know that you're touring this year; it sounds so cool, you're going on tour with Kieran Rose, the Autistic Advocate. And I wondered what next? Did you ever think that you'd be doing a tour and what else?

Kristy: I didn't think I would have a social media page. I still can't believe people are interested in anything I've got to say. A lot of the time I say things I just assume everybody, maybe that's because I'm autistic, I don't know, that I just assume everybody already knows what I write or say or everybody feels the same. I get literally hundreds of emails per week.

Gem: I bet you do.

Kristy: And I'm still, I'm always confused by them. Sometimes it makes me really uncomfortable, to be honest. I don't like words like mentor or leader, it makes me so uncomfortable. It really does because I like equality and equity and I like an even playing field and I don't like social hierarchies. So it's really exciting to be going on tour and Kieran is - I just couldn't love him anymore. He's an incredible autistic person and we're so similar, and conversation just flows with us. We had a business meeting last week, it was meant to go for half an hour, and three and a half hours later we're still talking. So I'm excited about that because we are going into communities that are pretty much riddled with medical pathology around autism. And we're talking about the experience of how we got to where we are and what needs to change. So going beyond that, my year is pretty full, my calendar is really, really full. I'm really heavily booked with consultations, which is always lovely because I love my work with families. It's so healing for me. It's such an honour and a privilege to sit with people in their most vulnerable state. And even six months ago, that experience was so different to what it is now for me. It's so humbling, and powerful and beautiful. I'm going on tour twice to talk about autism in a different capacity. But I'm launching this year, something really exciting that I haven't talked about before. It's a social enterprise and creating employment opportunities for the neurodivergent community. It's going to be a fantastic online resource. So I'm not going to say a lot about it right now, but that will be launched further in the year and I'm really, really excited about that. 

Gem: That sounds amazing, and that's Australia-based?

Kristy: It will be accessible to everybody everywhere, but it will involve neurodivergent people all over the world, not just autistic people, people from the queer community and LGBTQI community, ADHD, Tourette's, just everybody really.

Gem: That's so exciting. I feel like I could just go on, but... So, as you know, whenever I have someone on the podcast I ask them to recommend or share something that they're really enjoying at the moment and I just wonder what that is for you?

Kristy: ASMR

Gem: Oh, maybe we should do something in our microphones.

Kristy: Some people find it so creepy. I went to bed last night and I said to my husband, Gem is going to ask me tomorrow something to share that I really love and this is so weird to say, but I don't really love anything. How weird is that? I don't have a favorite book or I don't watch a lot of television. So, if anything, the one thing that is something I use every single night to get to sleep is ASMR or Binaural Beats. I love Binaural Beats. So, ASMR is this really strange online community of sounds that invoke physical experiences in the body that are just so relaxing and beautiful, for me. There are lots of people that just makes their skin crawl like my husband, I tried to get him to listen to them.

Gem: Oh, no you can't listen to it together.

Kristy: "Oh, boy, yuck!" I love it. I absolutely love it, and you can listen to it for free on YouTube. Sometimes it's people just saying really beautiful affirmations in a really lovely, soft, supportive tone. Sometimes people get into the whole ear eating thing. Look, I'm getting really... just come out with that with no context. There’s been a lot of argument in the ASMR community, everything I'm saying about this... It's not something I know enough about but I know people get annoyed when people say it’s a sexual thing, but there definitely are ASMR sound pieces that do have a sexual quality. That's definitely not why I listen to it. I like the tapping sounds or the scratching sounds. It's like when somebody draws pictures on your back with their finger. That's the feeling that I get from ASMR so it puts me to sleep. 

Gem: That's amazing. I’m going to try it out more myself. And talking of fun, I really wanted to say that if anyone doesn't follow you on social media already, whilst a lot of your content is incredibly hard-hitting and really to you it's normal. But not everyone thinks that way. Not everyone is aware of these things. So totally go to it for the hard-hitting content, but also, it's fucking funny. You had me in stitches this morning. Well it was my morning, I guess it was your evening but those videos of you and your husband in the background and you just with a suspicious face. They are hilarious so I'd really recommend for good combination of like...

Kristy: I feel so sorry for him.

Gem: I'm sure he doesn't mind?

Kristy: We are so different and that's why I tease him so much. He is so...I guess still in the masking process. We all have very different journeys. It’s so funny because one half of our family, my eldest daughter, my youngest daughter and I are very aggressive and very annoying and we're all ADHD so we jump around and we yell and scream and we have really, you know, loud laughs and we make funny noises and get in people's faces. And then there's my husband, my 14 year old and my 8 year old, completely passive, really quiet, really reserved and shy and lovely and considerate. And you put us all together and it's just… for us ADHDers, it's a hoot. It's so much fun. It's torture for them. It's traumatic for them. I also think my poor husband must be traumatised by me. I will literally stand outside the toilet when he's in there and ask him questions about what's happening because I know it grosses him out.

Gem: Oh my goodness. Maybe you have a future in reality TV.

Kristy: Oh, that could be quite incriminating.

Gem: Thank you so much Kristy, it's been...

Kristy: Thank you for saying that

Gem: Oh, no, everyone should definitely follow you and obviously that will be in the show notes as well as the links to different things we’ve talked about. And also if anyone's watching this and thinking that they want or listening to this rather, and thinking that they want to learn more about things like masking anxiety, whether or not to get a diagnosis, I know you've got videos and webinars on your website about those subjects. So people should definitely go and check that out and work with you because it's amazing. 

Kristy: Thank you so much.

Gem: Thank you.

Kristy: Thank you so much for having me. I'm so excited that you asked. It's been so much fun. 

Gem: Yes, it's been really fun, thanks for joining me. And thank you for sharing your lovely bird sounds as well.