Amplified: Autistics in Conversation with Reframing Autism

Conversation with Dr Melanie Heyworth

January 07, 2021 Dr Melanie Heyworth Season 1 Episode 1
Amplified: Autistics in Conversation with Reframing Autism
Conversation with Dr Melanie Heyworth
Show Notes Transcript

In this first episode Ginny Grant begins by introducing the show and providing context about herself and Reframing Autism. Ginny then introduces Dr Melanie Heyworth, who is an Australian Autistic woman, a self and systemic advocate for the Autistic community, Reframing Autism’s founder and CEO, a PhD candidate, and proud mother and educator to her three Autistic children.  

In their conversation, Melanie reflects on her late identification as Autistic, and how that led her to a growing interest in advocacy. Melanie also discusses the evolution of Reframing Autism from a small passion project to the busy not-for-profit organisation it has become. She talks about her hopes for the future, that there will be no need to 'reframe Autism', that Autism will have been 'reframed', and that Autistic culture and identity are recognised as valuable contributors to the richness of humanity. Melanie also summarises her current research into Autistic-led models of care to support families to understand their children's neurology. And finally, she discusses the challenges of balancing work, study, and parenthood, and how her hyperfocus and passion for learning spur her on.

Transcript of Amplified: Autistics in Conversation with Reframing Autism, Episode 1: Melanie Heyworth

 [Music intro: ‘Winter is here’ by Elliot Middleton for Premiumbeat, a delicate piano melody which creates a hopeful mood]

 Ginny: Hello and welcome to the very first episode of Amplified: Autistics in Conversation with Reframing Autism. 

I’m Ginny Grant, an Autistic advocate, a writer, and Reframing Autism’s Communications Manager. I’m so pleased to be here with my friend and colleague Dr Melanie Heyworth. Melanie is an Australian Autistic woman, a self and systemic advocate for the Autistic community, Reframing Autism’s founder and CEO, a PhD candidate, and proud mother and educator to her three Autistic children. 

For those who are not aware, Reframing Autism is a not-for-profit organisation which is run by and for Autistic people and their families and allies. It is dedicated to creating a world in which the Autistic community is supported to achieve acceptance, inclusion and active citizenship, and we are all about nurturing and celebrating Autistic identity.

We've started this podcast with the aim of amplifying Autistic voices from a diverse range of backgrounds. Over the course of the series, we’ll talk with numerous Australian and international Autistic advocates, sharing their stories and perspectives from lived experience.

Before we get started, a bit of housekeeping: I should mention that at Reframing Autism we use identity-first language. That is to say, we believe that Autism is a neurotype and an identity, and therefore we say ‘I am Autistic’ or ‘an Autistic person’ rather than person-first language. 

So, for our first episode, I wanted to catch up with Mel to chat a little bit about her very busy life and our work together at RA. 

[Music continues]

Welcome, Melanie. Let’s start with your Autism journey. Could you tell us a little bit about when and how you learned you’re Autistic?

Melanie: Thanks, Ginny. It's a pleasure to be here and to be talking on this, our first podcast for Reframing Autism. Like many women, I think in … in Australia and globally, I was, I am a late-diagnosed Autistic woman, and the route that it took for me is, I think, quite usual as well.

I got pregnant, I had my babies. I probably didn't manage as well as a mum, as I might have done, or as I might have imagined I would have. And, as my little people grew up, I realised that they were different, and as those differences became more obvious and were labelled in various different ways – eventually as Autism – I thought that it was probably time to re-evaluate my own experiences and my own life within that frame.

So, my eldest was diagnosed first and then my youngest, and my middle child and I were pretty much identified as Autistic at the same time, almost together. We’re like ... we're very similar, so I kind of felt that if they were going to be diagnosed, the likelihood is that I would be or vice versa; if I was diagnosed the likelihood would be that they would be diagnosed. So, we had … we went through that journey together, but given that we were … I was basically looking down the … you know, at having three from three of my children Autistic, it seemed like a genetic component was fairly clear, and so, I thought it was important for me to understand my own identity but also to help me to understand my children's identities as well, so that was a fairly big motivator for me. And, I'm an academic, or I come from a very academic-y kind of background, so when my eldest was identified as Autistic I'd gone to study as well and I think as I studied more and more, I … and read more and more, I think all of those little nuggets from my past made more sense and I think it had … the idea that I might be Autistic myself had been lurking for some time before I actually went and saw a diagnosis.

So, I think it was for … as it is for many, many people, it was a massive … It gave me an opportunity to re-evaluate. And I think it was quite revel– it was quite a revelation, even though I suspected it all along I think, as for many of us, you know, I was thinking I had imposter syndrome and I couldn't possibly be Autistic because I’d done my PhD and I'd managed to get married and have children and have a reasonably successful life and I had played into all of those internalised able– ableism and stereotypes, so that … it really did take me by surprise even though I was expecting it. And I think that took me a long time to … to work through those ideas of … of both.

I kind of always knew I was Autistic, or at least as, as I said, as soon as my eldest was identified. But I also couldn't quite believe that that would be … that I would be able to find an answer for why I was different or, you know, for the things that had happened in the past.

Ginny: Now thanks that’s so … that's so relatable and very similar to my own story. 

So, we'll move on to the next question: how did your interest in Autistic self- and systemic advocacy develop?

Melanie: It's interesting. I … All my life, all I've ever wanted to do was be an academic. When I was seven … My dad is English, and when I was seven, my Mum and Dad and my sister and I went to England. And, as part of that holiday, we went to the Tower of London, and there I met, you know, the classic Beefeater who told the story of … in the White Tower, you know, if you were beheaded and you were a noble you needed to have your portrait painted and, there was a guy, a noble, who hadn't had his portrait taken before he was beheaded, and so they sewed – after the beheading – they sewed his head back on and put a ruff around his neck and painted him. So there is a picture in the Na –  there's a few possibilities for which this painting might be but there's a picture of a very yellow, jaundiced, dead-looking man with a ruff around his neck in the National Gallery in London, and that story captivated me at seven. I just thought that was the coolest thing that ever could be and I just couldn't understand how anybody in their right mind wouldn't want to spend the rest of their life studying that.

So, from a very early age, I knew that I wanted to study medieval history, and that was all I did with my life. I read medieval history. I read medieval fantasy. I worked to that goal with absolute and utter drive for all of my childhood from seven throughout high school. I went to university; I did a Bachelor of Arts, majoring in medieval studies and I went straight into my PhD to do more medieval studies.

And after my PhD I had my eldest child, and I was very quickly faced with a choice: my mental health wasn't particularly good at that point and I needed to choose between whether I would be the mother I wanted to be or the academic I wanted to be, so I'm … have that really deep perfectionistic sort of tendencies, and I had postnatal depression, and a lot of that was around that I wasn't being the perfect mother that I had imagined myself to be – not helped, of course by the fact that I didn't understand my baby's neurology and my baby didn't sleep and didn't eat and wasn't doing the things that other babies were doing – and so that really threw me because I was used to being a really high achiever and when I put my mind to being perfect at something, I pretty much always achieved it – until it came to motherhood. And I also had been so driven for such a long time about my dream to work in medieval studies that I couldn't bear the thought of not being the perfect academic that I had in my head as well. And when my eldest was about six months old, I had the opportunity to teach a course that a colleague and I had co-constructed. It was the first course I'd ever developed on my own. It was everything I'd wanted to teach. I was really interested in sexuality and gender roles across the medieval period and it was all about sex and the medieval times, and I … was just everything I wanted. And it was the hugest disappointment, because I had this little person at home who needed me and I couldn't 100% focus on that little person nor could I 100% focus and give my all to my work as I wanted to.

So, that's a really long-winded way of saying I had a choice and the choice was: do I be the best Mama I can be or do I be the best academic I could be, which really isn't a choice at all, so I gave up my academic career, and I think I grieved so much for that loss of self-identity, because that was, I had always been the medieval chicky and I'd somehow lost that. When my eldest was identified, as I said, the first thing I did was enrol in a uni course to understand better their neurology, because I was really ... it was so important to me to be able to understand what was happening. I only had very erroneous and superficial stereotypes to work with; I didn't know very much about Autism. I probably had been really inappropriate and laughed at some of my colleagues as being Autistic in the universities – which they may well have been – but, you know, I had very little idea, so I enrolled in a course, in a postgraduate course in Autism Studies, and the … for the first time ever it really sat uncomfortably with me. I still wanted to achieve perfection, so I still worked … I worked slavishly hard to get amazingly high grades because that's important to me and I'm not very good at not getting the sorts of grades that I'm used to. So … but, the whole experience challenged what I felt was, in my gut, was important as a parent of this little person, and there were lots of recommendations of evidence-based intensive therapies that I felt uncomfortable with. There was very little acknowledgement of an Autistic voice. So I had that that feeling of unease, and then, when my eldest started school, I think that unease crystallised into an action plan for advocacy – so school has not been kind to my little people – and I realised how very hard it was to get good action and good outcomes for our kids. I realised that it wasn't just my kids that were not getting the outcomes that they deserved, and the more parents I spoke to and the different courses that I did, it really struck me that a lot of parents were so helpless and hopeless – even quite early in their school journeys – that the best they felt they could expect from the education system was that it wouldn’t actively traumatise their children. They weren't looking for the best education for their children; they weren't looking for the best outcomes for their children. They were hoping that school wouldn't do harm. And I think it was that, coupled with, sort of, what I’d learned from the Autistic community, coupled with my unease about the, you know, that academic sort of side of things that I had always been so absorbed into, that really led me to the fact that I wanted to do something about this. I wanted to support families, but mostly I wanted my kids and my kids ... my kids’ friends, and every Autistic child to have the same hope for excellence and huge expectations that any other child had. It just seemed so wrong that we had so ...such low expectations and that this seemed to be just endemic, and then the more I looked, the more I realised that our Autistic community is treated really poorly, and is stigmatised and ostracised, and it wasn't okay. I wanted to make a difference, so, that's how I got into advocacy.

Ginny: Great. Can you tell us about what motivated you to start Reframing Autism and how it evolved?

Melanie: Sure, so Reframing Autism started off, actually, not anything like it is today. As probably you'd expect, it's been an evolution over time, but certainly it started off as an idea – coming from what I just talked about – that families needed an advocate to support them in school meetings, they needed someone who understood Autism and could go into schools and be their child and the family’s advocate, from an Autistic, strengths-based perspective, but that seemed like a grandiose idea at the time and I didn't really know how to action it. There wasn't … I didn't have a next step to that. At the time, I was actually working at an early childhood intervention centre that did OT and speech and those kinds of things, and I was working with parents of newly diagnosed Autistic children but children with other disabilities also. It struck me that those parents could really do with just being told about Autism from an Autistic perspective, that the kinds of messagings that they were getting – particularly from diagnosticians who gave them the, you know, disclosed or communicated their child's diagnosis – were setting these parents up to fail by recommending things that were … could … could potentially be harmful or by just starting out with a hugely deficits-pathologised frame. So parents aren't … weren’t … I felt really strongly that parents weren't being given the opportunity to be the best parents that they could be for their kids, because they were being set up to fail by the very people who should have been supporting them from the moment that Autism was ever mentioned.

So that's where I thought, well, maybe what I do is I talk to the parents that I was already working with, and make sure that they had a good sense of what Autism is from an Autistic perspective. And I was really lucky that the CEO of the ECI I was working at, Sylvana Mahmic, listened to my idea and supported me to set up a group for the families at Plumtree, which is the name of the ECI. I got a small grant from Peers Creating Change Team Up, which was administered by the Council for Intellectual Disability of New South Wales and I started to get Autistic speakers in to come and talk to parents. We started with eight families and very quickly the need was recognised and the … and people started flocking, and it was … it wasn't … it didn't take very long for us to max out what the capacity was at the ECI I was at, and that we were having 50 odd people come – or families – come to our events and really were finding what we were saying –talking about neurodiversity and Autism from an Autistic perspective and how to parent Autistic children respectfully and with joy and with hope for the future – that those things really resonated with the parents that we were, we were working with. And then, as I said, you know, it was just step-by-step. We got funding, funding to become independent. Plumtree was amazing in supporting us with that. The NDIS, which is the National Disability Insurance Scheme in Australia, funded us to expand the project and to become independent. And then, we were just building on success after success and making an impact. We were making a difference to families and to children, and so eventually we got the much larger grant that we're now working with, which has allowed us to employ and contract Autistic people on a much grander scale and reach many more families than we ever, wellI ever, thought was possible when I started out with eight families a few years ago. 

Ginny: Oh, yes, definitely and, you know, that was how you and I met, and those early sessions at Plumtree really, really resonated for me. I was hearing messages from Autistic speakers about all kinds of things – messages that I wasn't hearing anywhere else, so it was just so valuable and it helped me to believe in the concepts that you were developing down the track. 

So, in, in terms of Reframing Autism’s progress to date, what are … what are you most proud of, and what do you hope that Reframing Autism will achieve in the future?

Melanie: That's a really … that’s a huge and hard question. One the things I'm most proud of is around employment for Autistic people. Nationally, the, the, the employment statistics for Australian Autistic adults are really dire, and far worse than those for people with other disabilities – which are shocking, in and of themselves. So … and those employment statistics are not just around unemployment, but also around underemployment – that we're not using Autistic people for the skills that they have or we're not giving them the hours or the flexibility. And one of the things I think I'm probably most proud of is that we have been able to employ six people, five of whom are Autistic and one is neurodivergent, that we have a fully Autistic board or, sorry, fully neurodivergent board with majority Autistic representation, that all the contractors that we hire to help us with our work at Reframing Autism, we always look first for an Autistic person, and, you know, we haven't always been … we haven't always managed to contract an Autistic person but the vast majority have been, and so we're actually doing something. We're doing something really concrete about creating employment opportunities for Autistic people, and showing how very little it takes to be flexible in the workplace, and to have amazing, driven, thinking, engaged, passionate workers, which is just amazing. So ... and that's one of the things I'm most proud of. 

But I think there's also an impact on individual lives, and I don't want to give any details because I don't want to share something that might identify this lady, but one of the ladies that I worked with quite early on ... I will never forget when she came up to me some sessions into the, the work that we'd been doing together and said that, before she’d talked to me and before she’d come along to Reframing Autism, she never had considered her child's happiness. It was always about what he needed to succeed to be normal, and since coming to Reframing Autism, she had started to think about his happiness, and what might make him happy and, since she'd begun to do that and prioritise his happiness, he had begun connecting with her in a way that she thought was never going to be possible, you know, showing his love for her and for that connection that she had built with him around what made him happy. And she had always thought that she would have a child who would be removed and unfeeling because her priority was somewhere else. And, as I said, with … we set our parents up to fail and I think one of my proudest moments is knowing that I had made the difference for that child and that mum to feel the depth of success that should just be … we should be gifting this to every parent. 

As for what I hope to achieve in the future, we have a joke: world domination, but, certainly, my hope is that we're redundant. I hope that there is no need to reframe Autism, that we will achieve that, that Autism will be reframed. I hope that I never have to refer to employment statistics for the Autistic community. I hope that parents have the highest expectation for their children's education. I hope that parents have the ability to empathise and understand their Autistic children's neurology in a way that builds resilient, safe, and joyful people who will then go and be resilient, safe, happy, joyful people into their adulthood. I hope that we start to re-evaluate all the things that we think are important, you know, how we contribute or what independence means or what happiness means, so that it can include our Autistic community in an organic way, so that our Autistic identity and culture are recognised as really valuable contributors to the richness of humanity.

Ginny: So, Mel, you've just begun a PhD for the second time. Would you like to tell us a bit about your area of research, and how that relates to Reframing Autism’s mission?

Melanie: Gosh, yes! But I'll be … I'll be quick, I'll be quick. I won’t do a full infodump.

I think, for me, one of the things is that we can't help parents to be the best parents they can be unless we have Autistic-led models of care to support parents, and there are still many challenges in – particularly, I think, for non-autistic parents parenting Autistic children but also for Autistic parents parenting Autistic children – there are challenges involved in that. I think it's so important that we have respectful models of care that support families to be supportive and respectful and accepting of their child's neurology because that's how we get the best outcomes for our kids and our families. And so, I think the research that I'm doing is sort of framed by a lot of different theories around attachment, and interpersonal neurobiology and mind-mindedness, and you could go and search any of those terms up and find them on Wikipedia and be able to access what those mean, but, essentially, one of the big things that I'm doing is taking Damian Milton, who's an Autistic father and academic, talks about the ‘Double Empathy Problem’, that it's not just that Autistics can't empathise and understand non-autistics, but non-autistics find it really hard to empathise and understand Autistics too, in a nutshell. And I think that that is so true for parents and until parents can understand and empathise with their Autistic children accurately – understand what's going on really well – it's really hard to pair it with compassion and kindness, and all the things that are going to build our children to be the best that they can be. So, that's what I want to do. That's, that's the research ... is around making sure that we have Autistic-led models of care to support families to understand their children's neurology, and there's a saying that if you can summarise your PhD in five minutes or less, you're ready to submit, but, given I've just started, I'm going to say I'm not ready.

Ginny: You did well. You did well. 

So, look, your life is just so full, with Reframing Autism, the PhD, homeschooling three children. Can you just tell us how you manage it all? 

Melanie: No, I have no idea! I have a fabulous team at Reframing Autism who do amazing work. We share a vision and we share the mission, and the commitment and the passion. So that's really helpful so the Reframing Autism work is shared among, as I said, my, my brilliant team. I have a fabulous relationship in my family with my kids and my husband, who are also really supportive. But, I suppose, for me the big thing is, I get it all done because I don't see any of those elements as work or hobbies or family. This is ... I am intensely hyper-focused. So, all of these … this is my hobby. These are my passions. My family is my, my life and my work is my life, so I don't really compartmentalise it into saying, oh well, I'm doing these different jobs and they each take so much time. I'm immersed in the whole dynamic as my life.

You know, as I mentioned, since I was little, I just had one trajectory. Now, it's a different pre … preoccupation, and I think it allows me just to … everywhere I look, I see RA … I see potential to do different things.

And I also love learning so none of this is a hardship for me; it's all really joyful and, so, when there's joy, I don't think anything seems very taxing – and I also don't sleep very much, which I think does help a lot.

Ginny: I so agree with you about when you're enjoying something it doesn't feel like work and, equally, I don't sleep very much, so I can definitely relate.

Mel: That's why we make such a good team.

Ginny: So look, thank you, Mel, and thank you to our audience for listening to our first episode of Amplified. 

In our next episode, we'll talk with the highly esteemed Yenn Purkis, an Autistic author, presenter and advocate. Please do join us next time. 

In the meantime, follow us on social media if you're not already following us. You can find us on Facebook, Instagram, LinkedIn, Twitter and YouTube. We also have a website, www dot reframing autism dot com dot au, which is a treasure trove of Autistic-created resources. 

Thanks and goodbye!

Melanie: Thank you.

[Music continues]