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