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...