Interview between Speaker 1 (Meg) and Speaker 2 (Dr. Melanie Heyworth)
Episode 74: How to Align Our Work with Our Deepest Values
[Introductory music]
Welcome to the Two Sides of the Spectrum Podcast. A place where we explore research, amplify Autistic voices, and change the way we think about autism in life, and in our professional therapy practices. I’m Meg Proctor from learnplaythrive.com.
Meg:
Before we get started, a quick note on language. On this podcast, you’ll hear me and many of my guests use identity-affirming language. That means we say ‘Autistic person’ rather than ‘person with autism’. What we’re hearing from the majority of Autistic adults is that autism is a part of their identity that they don’t need to be separated from. Autism is not a disease, it’s a different way of thinking and learning. Join me in embracing the word ‘Autistic’ to help reduce the stigma.
Welcome to Episode 74 with Dr. Mel Heyworth. Y’all, a little behind the scenes here. Every time we release a podcast episode, we pull out a few quotes to put on Instagram. And as soon as I finished recording this interview with Dr. Mel Heyworth, I texted my colleague who picks up the quotes and basically just said, good luck picking out only a few because there’re so, so many insightful, impactful, quotable moments in this interview. I could listen to Mel talk about how we can support our Autistic clients more authentically for hours and days. She just takes the things we’ve been learning and drives them so much deeper. In this episode, we talk about a lot of things from research, to the pandemic, to Autistic parents, and how to tell kids that they are Autistic. We talk about supporting passions in a way that respects our neurodivergent client’s autonomy and self-determination. But the theme that I tracked, the theme that Mel brought us back to over and over again in the conversation was aligning our work with our deepest values and desires, which I believe for most of us is the desire to help our Autistic kids become their most joyful, authentic selves in this world.
I’ll tell you about our guest, Dr. Melanie Heyworth. She is Autistic. An autism researcher, she’s the mother to three wonderful Autistic children, and she is working on her second PhD. She’s the founder of the Australian Autistic-run organization ‘Reframing Autism’ which I’ll quote their mission here, it ‘Aims to disrupt the status quo for the Autistic community by providing Autistic-led research resources and educational opportunities’. Okay, I am so excited to share with y’all this interview. In the interview, you’ll hear Mel describe the way we pathologize autism as ideology. Okay, I’m gonna give you a quote from Wikipedia. They’re quoting John Macionis is from a sociology textbook. It says, “Sociologists define ideology as cultural beliefs that justify particular social arrangements, including patterns of inequality.” So, the medical model of autism is something that we are taught and asked in our professional work to basically help keep alive. And those of you here are some of the ones saying, “No, I question this ideology. I don’t want to be the one keeping it alive. It doesn’t align with my values. I want to do it differently.” And I am so glad you’re here.
I also know from experience that it is really hard to practice in a way that you weren’t well trained for. So, before we get into the interview, I want to make sure podcast listeners know about the resources we have at learnplaythrive.com. We have free trainings and continuing education trainings. The continuing education trainings are registered for AOTA and ASHA CEU’s, and we’re applying for ASWBC used for social workers. We have a new training called ‘Let’s UNMASC’ by Autistic SLP’s Rachel Dorsey and V. Tisi, where they teach a totally new clinical reasoning process for understanding Autistic social communication. I teach a very inexpensive and accessible two-and-a-half-hour course where I teach my approach to strengths-based treatment planning. We have in-depth courses in strengths-based approaches, goal writing, and AAC, and we have a Summit coming up with an incredible neurodiverse panel of instructors. So, just go check it out at learnplaythrive.com when you’re feeling ready to really deepen your learning. Okay, here is the interview with Dr. Mel Heyworth.
Hi, Mel! Welcome to the podcast.
Dr. Melanie:
Hi, Meg. Thank you so much for having me.
Meg:
I am glad that you’re here. And I’m glad that we could find a time that wasn’t the middle of the night for either of us across an ocean. I want to start by talking about your story, Mel. Tell us a little bit about yourself and how you came to do the work that you do.
Dr. Melanie:
I mean, you know, it’s a bit of, a it’s a bit of a — how long, it’s a Piece of String question. So, I started off as medievalist. So, you know, when I was little, I, my dad’s English, and we went to England and I fell in love with mediaeval history. And I spent my whole life since I was about seven thinking that I was going to be a medievalist, and it was, this was my — it was what I was going to do with my life. And I knew exactly what I wanted to do. So, I went through my whole teenage years and young adult years with sort of hyperfocus on being a mediaeval, you know, academic and researcher. And then, I had kids. And they didn’t, obviously, hadn’t read my life plan, and hadn’t sort of engaged with my planning document. And so, they took up a lot of, you know, my being and who I was, and my identity changed so much being a mum. And when I found out that my eldest was Autistic, and then very quickly thereafter, found out that my youngest was Autistic, and then that my middle and myself were Autistic. So, within, basically, the span of about a year, I had four, I went from having no one — well, obviously, we’re always Autistic — went from having no Autistic family members to four of us, and of a family of five. I went deep, what I do best. And I thought, well, I can’t keep working in a, you know, and dedicating my life to an academic field that isn’t going to contribute to my children’s lives. So, I went back and did some postgraduate work in autism. And I think, at that stage, I really realized that for the first time in my life, there was a disconnect between my lived experience and research. And so, I sort of fell back into research, but in autism. And I looked at other parents who were also sort of travelling the same journey that I was, and who didn’t have the access to research, and who didn’t have support like I did. And I wanted to change that. So, I sort of also fell into Reframing Autism, which is the charity that I now work with my colleagues. So, yeah, so it’s, I don’t quite know how I’ve got to be honest. But I think I put it down to my kids. It’s a lot, there’s a lot to do with, you know, wanting to make sure that the world is better for them.
Meg:
I imagine that’s a great loss to the world of mediaeval researchers. But a huge gain to those of us who want to learn more about how to support Autistic people in a way that is informed by the Autistic community. And you’re doing it differently. So, I want to talk about Reframing Autism; you’re the director, co-CEO, founder. How is Reframing Autism different from other organizations out there that are meant to support Autistic people and their families?
Dr. Melanie:
I think probably the big thing is that we’re Autistic-led. So, we have our leadership team, our whole, our whole team is Autistic. And our board is primarily neurodivergent and majority Autistic as well. And so, it isn’t an organization that is, you know, co-produced or co-designed alongside the Autistic community. It is led by an Autistic community. And, you know, as with all organizations, with all charities, you know, we try and tap into the community, we try and work with our community as much as possible with the diversity of Autistic people to inform the work that we do, and to inform the resources that we provide, and the educational opportunities that we provide. So, I think that’s part of our difference is that, you know, we are Autistic all through and through. But I think the other thing is that I have come from that research perspective as well. So, we have a kind of — we really appreciate and value and respect lived experiential knowledge, which is not often the case, you know, research kind of capacity. So, for us, our lived experience knowledge is of equal, if not greater value than, you know, ‘the research’, you know, so to speak. But I also recognize eyes that paradigms don’t change necessarily on lived experience knowledge alone. And so, we do also focus on that respectful research that is inclusive that has been co-produced. And we try and work with research partners to produce better research about the communities, about our community, and to shape the research questions that are being asked. So, I think that’s our other point of difference, is that we have this combination of lived experience knowledge and research knowledge, and we’re trying to marry those with a really deep focus on well-being. So, we’re not actually about trying to — we’re trying to change paradigms for the well-being of the community to improve quality of life, to improve the way that Autistic people can thrive and flourish, and enjoy our lives and have joyful, happy, good times in life and, you know, be part of our community, our broader communities, and also have an Autistic community as well that’s thriving and flourishing. So, that focus on well-being, the focus on lived experience and research, and the all-Autistic team, I think that’s what makes us who we are.
Meg:
That is so needed. Those of us who are trying to do our work differently but are billing insurance, or justifying to our companies, or I’m applying to professional organizations for continuing education course approval, and they’re saying, “Where are the high-level research studies?” And I’m like, okay, here are the high-level research studies. But here are the outcomes that they’re looking for. And it’s not that those don’t align with our core values. I’m an OT, it doesn’t align with my code of ethics. So, here’s the other research based on people’s lived experiences that says we need to do something different. So, I’m glad that y’all are out there doing it. And you’ve done some interesting research. More recently, you really dove into Autistic parents’ experiences during the COVID-19 pandemic lockdown. Can you talk a little bit about that? What did you find, and how, if at all, was this informed by your own lived experience?
Dr. Melanie:
It was fantastic research. And I, you know, I had a, I worked alongside a group of brilliant colleagues. So, it wasn’t me on my own. There was a big team of us and from, you know, internationally. But as an Autistic parent, when we talked to both Autistic and non-Autistic parents and Autistic young people themselves about their experiences of COVID. And it was, well, we had a particularly Australian focus, obviously, that’s where I’m from. And so, you know, and a great deal of our team were from. So, we did have quite an Australian focus. But I suppose, just taking a step back, one of the overarching things and stereotypes that I find extraordinarily distressing and damaging is that Autistic people don’t want connections, don’t need social connections, don’t feel deep emotions, don’t feel steep social emotions and connections. And whilst that double empathy problem construct that is now, you know, over a decade old is starting, you know, Damien Milton’s work is starting to take hold, I think there’s still a lot of stereotypes out there that Autistic people don’t have good relationships with others. And so, when we were doing this research, what I kept on hearing and my colleagues kept on hearing from Autistic parents — and from non-Autistic parents as well, but there’s lots of stereotypes about Autistic parents — was that, you know, Autistic parents of Autistic children have these profoundly deep and empathetic and loving relationships with our children, which accords completely accurately with my own experiences of my relationships with my children, which I think are deeply connected, and attached, and secure, and loving, and fun, and joyful. And, you know, my kids are my life. And you can hear my voice. I try not to tear up when I’m talking about them.
So, you know, it’s that, and we just saw that again and again. So, I think some of that we found was definitely based in that shared neurology and shared lived experiences. So, there is a sense that, you know, having a shared neurology between parent and child did contribute to, you know, the ways that we could empathize with what our children might be feeling. Having said that, the non-Autistic parents that we interviewed had also very deep empathy, perhaps not necessarily stemming from a shared neurotype but from other, you know, other places. But I think what was really interesting when we did interview so many Autistic parents was that they could see what might be potentially damaging about the COVID lockdowns in a way that they could sort of map onto their own experiences and understand what was going to be damaging and distressing to them, and sort of see the potential impact on their children. And so, what we saw in our parent population was this real focus on their children’s mental health. So, I’m not sure what it was like internationally. But in Australia, we heard a lot of people being — and this was not in our survey, not in our research but outside of our research — you know, there was a lot of media narrative around kids losing a year of education, because we had these extended lock downs that, you know, people had to school from home, and how was that, how are our kids going to manage losing a year of education? And it was really interesting, because the majority of the Autistic parents we spoke with, just weren’t interested in, you know, education is lifelong. So, a year of education could be caught up. But mental health, the mental health implications were now and would be also lifelong. So, if they were not managed appropriately now, they could have these lifelong implications. And so, it was humbling and beautiful to not just witness people’s intense relationships with their children, but this deep focus on what their kids needed to build their mental health and to stay resilient in what was such a distressing and potentially traumatic time for so many.
So, the other things that we learned were, you know, and I think these have been echoed in other studies is that, you know, Autistic parents have particular challenges, we have specific challenges, you know, juggling the expectations of neurotypical neuronormative daily life can be quite a lot. And for many of our parents, the initial lockdowns were quite welcomed, because all of a sudden, we didn’t have to do school drop off, and we didn’t have to interact with people at the school gate. And we didn’t have to juggle a whole lot of things that are just part of, you know, the way that our neuronormative society is kind of built. So, that was often initially, although it didn’t, that relief didn’t last, there was a relief around not having to juggle those expectations anymore. But there were other challenges as well, dealing with sensory overwhelm and managing our own mental health were sort of things that were particularly pertinent for our Autistic parents. But the message that came across was just this clearly one of sort of really connected, loving relationships. And, you know, I think we are often, parents are often cast, and parents regardless of neurotype of Autistic children, are often cast as struggling in parenthood. And that’s very often seem to be put down to our child or to their Autistic identity, and all the things that we struggle with, you know, seem to be located in our children, rather than what we found was that, actually, a lot of it was located in the systems that we have to parent within. And that was regardless of neurotype, you know. And it was, really, it was — it was humbling, but it was also… I’m trying to find the right word, and I can’t. I can’t think of it. But, you know, it was beautiful to hear about parents, it not being necessarily about children and autism, but about systems and about expectations and stigma and all those kinds of things. And that guides my work, is to try and actually understand what parents are experiencing. Because often, I think we assume things that might not necessarily accord to parents’ experiences.
Meg:
That is so important. There’s just so many takeaways from what you just said from, you know, moving past this very dangerous and very misinformed idea that Autistic people lack empathy or lack of drive for social connection, which it doesn’t take much listening to say, you know what, that is — that’s absolutely wrong. If people aren’t familiar with the double empathy problem, we had Dr. Damian Milton on Episode 2 of the podcast to talk about how people of different neurotypes often have trouble understanding people have the other neurotype, and then we as neurotypicals will misconstrue that as a deficit of the other person. It also made me think a lot about Episode 33 of the podcast, if people want to go more into Autistic motherhood, we had Moyna Talcer on to talk about the sensory experiences of Autistic mothers. And a lot of similar themes of like wanting community, having a different experience than neurotypical parents, but this profoundly connective experience with their child that, as you said, it’s not martyrdom, it’s not tragedy, it’s trying to parent in a very, very challenging system. And I appreciate you placing that where it belongs. It’s so helpful and so insightful. Mel, you have so much that I want to talk about. You’ve done so much work. I’m going to shift your book. You have a book called ‘Just Right for You’. It’s a book about autism by you, an Autistic author and researcher, and it is for Autistic kids and their families. Can you talk a little bit now about your book and what the impact of the book has been on you or on your readers?
Dr. Melanie:
So, I never imagined that I would be a children’s author. This was not — it wasn’t in my planning document. And it certainly wasn’t in how I was going to, you know, interact with the world. I always thought I might be an author, but I thought it would be a young adult author or, you know, something like that. When I was in high school, I spent a great deal of my time reading because I had wonderful friends in books. So, I always sort of thought, oh, maybe I could be an author and give other people friends from, you know. So, not a picture book author, but ‘Just Right for You’ came from a place where I had lots of parents talking to me about wanting to know how to talk with their child about their child’s Autistic brains in ways that were going to build them up into their Autistic identity and show them the strengths and the beauties of their Autistic identity. And we often talk about, with parents, you know, parents will say, “When’s the right time to talk to my child about their Autistic identity?” And my answer is always, forever, you know, as soon as you know, your child has the right to know, because it’s their identity. But how do you do that? And how do you do that in an affirming, strengths-based way that’s going to tell them about who they are in ways that they might be able to relate to and are appropriate? And often, you know, we are talking to young kids about these things. And parents are like, “Well, they’re too young to understand.” So, I wanted a resource that wasn’t too young. They weren’t too young to understand. And if they didn’t understand every nuance, it didn’t matter, because you could come back and read that with you. So, ‘Just Right for You’ was my sort of what would I have wanted if I could go back and redisclose my eldest identity and my youngest identity, you know, in those moments, what would I have wanted as a parent to sit down and cuddle with my little person on the couch and read them a book that would set them up for feeling really good about themselves, and their Autistic identity, and any differences that they might be experiencing. And for some children, there’s lots in there that won’t resonate, or that they won’t get on the first reading or the second reading, but it’s one of, I hope, it’s one of those books that you come back to and read to your kids again and again. And certainly, the people who’ve reached out to me about sort of sharing it with their children have talked about that, that this is one of those books that they come back to when it’s a beautiful way of introducing autism and their child’s Autistic identity to them. And it’s written by a parent for their child. So, as I said, that really deep resonance, I suppose, of what I wanted.
And then, recently, I’ve actually, this year, I published another children’s book again. Not in my — was not was not in my plan, which is around Autistic friendships, and called ‘Remarkable Remy’. And Remy is this amazing Autistic character who offers so much in terms of the way they engage in friendship, because I think that’s the other stereotype, is that Autistic people, you know, don’t make easy friends. And I had people asking me, you know, “How do I talk to the siblings, and the cousins, and the class about how to be a good friend to an Autistic person?” And I kept on thinking, I don’t think it’s about how you’d be a good friend, I think it’s about appreciating all the wonderful things that Autistic people bring to friendship, if you have the right framing. And so, I wanted to offer people that ability to frame that with the people, with the young people that they’re working with or supporting. So, yeah, these are both books that I suppose I wanted in different moments in my own life, but also that parents had sort of spoken about, and schools and other places had spoken about the need for. So, yeah, and I think I get some lovely messages. It’s kind of one of the really affirming things for me is I get some really lovely messages from parents saying, “I’ve read this to my child, and it was the best thing for them. And it really resonated with us,” or I think sometimes it can help parents as well to reframe their own thinking, too. And schools and other places, you know, that there are different ways of thinking about any of these things. You know, identity is not a static thing, and we don’t have one sort of ideological frame, so offering people different ways of casting being Autistic and being an Autistic person in a neurotypical world, I think, is really important.
Meg:
If people are about to start frantically scrolling back a few minutes into the podcast to get the names of your books, I want to let y’all know I will link to everything in the show notes for this episode, because that’s a really high frequency request that we hear from therapists, “Okay, parents are always asking me should I tell my child they’re Autistic, and if so, how?” And therapists don’t know how to advise them. We don’t have a lot of guidance on that either. I also, I like to imagine so many parents are discovering they’re Autistic after discovering their child is Autistic. So, it’s interesting to imagine those parents’ experience of reading that book as well, because I think it’s probably the book that a lot of those parents wish had been read to them so much earlier in their life, there’s maybe some healing there.
Dr. Melanie:
I think there’s just such a, I mean, there’s, we know that a lot of parents of Autistic children will eventually, you know, whether they are formally identified, or they self-identify, or they just sort of identify in that sort of broader phenotype or where, there will be many, many things that resonate between a child’s experience and a parent’s experience, and whether that that turns into a full, you know, ‘I’m definitely Autistic’ or not, a lot of us carry that kind of, you know, what we experienced from our childhood, and being able to reframe that is also very healthy. And it is great for our relationships with our kids. So, you know, it’s all of, I think it’s your right, and anything that can be done to support parents to sort of come to a, you know, an acceptance of their own identity is really important, too.
Meg:
It’s so important. So, for folks who are helping parents figure out how to talk to their kids about being Autistic, do you have a few guiding principles that you could share?
Dr. Melanie:
So, I think that the most important thing is that parents always talk about diversity in all of its guises. So, this is something I talk about a lot. Neurodiversity is just one type of diversity. But if we normalize that everyone is divergent in different ways, if we normalize diversity, and that can be, you know, from the very simple things, you know, some people are tall, some people are short, some people like ice cream, some people like soy sauce, you know, it doesn’t really matter what it is, the world is richer because of the diversity in it. And humanity is defined by our diversity. That is, what is the depth integral to who we are as a species. And so, the earlier that parents can just start to draw attention to the beautiful differences in the world, the easier it is to map, then, brain differences and the beautiful brain differences that we need so that we have people who are artists and provide us with stunning things to look at, people who are architects who provide us with brilliant places and spaces, people who are mathematicians, people who are interested in recycling, people who are interested in environmental science. That we have, well, you know, we have, we need a diversity of brains, and we wouldn’t want everyone to be the same. Stuff would be very boring, and it also wouldn’t solve any problems. So, the earlier that parents can bring focus to diversity, however it looks, the easier it is, then, to start to think about, well, your brain is just a different brain. So, you have a different brain. And that’s okay, because everyone has a different brain. And your different brain is different in these ways. And my brain is different in these ways. And that’s okay, because everybody’s brain is different.
So, I think my guiding principle is always being totally open about the fact that difference is normal. We’re all different. And so, instead of pathologizing, or worrying, or trying to find… Sometimes I think we really struggle to find — not struggle, but we strive to find strengths, and we don’t think about challenges. And for most of, or for most Autistic people, for most every person, you know, challenges are part and parcel of our differences as much as our strengths are. So, I think it’s about your differences give you these strengths, and your differences give you these challenges. We don’t have to deny that there are challenges. And it might mean that some people in the world won’t understand you as well because these are your strengths, and these are your challenges, and they’re different. But it’s just that it’s really a discussion about difference in diversity. It’s not a discussion about autism. Autism is just one element of identity, one element of difference in diversity. And so, the more we can just focus on that sense that everybody is different, and that is good. It’s a good thing. So, that when we talk about what are each individual’s unique specific differences and unique specific needs, we can locate that in that basic principle that everything is okay if it’s different, that’s all right.
Meg:
Yeah. And kids have an incredible capacity to understand and accept that. I love that framing. That’s a really nice segue into one of your older works, ‘Manifesto for Allies’, where you described autism as a series of differences. I was thinking about our last episode with two Autistic speech language therapists. And they talked about how we pathologize Autistic people. V. Tisi named that in many fields, there’s this attitude of, “They’re Autistic, they need therapy; there must be something to fix. There’s something wrong with them.” How does the manifesto and your other work push back against this idea that being Autistic means there is something that therapists need to come in and fix or correct?
Dr. Melanie:
I think the manifesto, it is an oldie but a goodie. It’s been around for a while. But again, it was one of those early works that I wrote because I saw that parents were often given an ideological position from diagnosticians and professionals, who in turn had been given that ideological position from their education and their training. And their ideological position was around pathologizing Autistic people, that autism is, you know, is a disorder, and that it’s not around, you know, this disorder versus identity discussion or debate, or, you know, it is still very prevalent. And we still train and educate many of our professionals, our allied health professionals and our medical health professionals, from that pathologized position. And it makes sense, because the DSM is, you know, which, in Australia and the US is, obviously, the guiding diagnostic manual, is pathologizing. It’s a diagnostic manual, right? So, I can logically understand how people get to this position. However, what disturbs me a lot is the idea that we don’t see pathologizing autism as an ideology, because it is. It’s an ideological choice. That we have a choice, as professionals, diagnosticians, allied health professionals, medical health professionals, mental health professionals, educators, we have a choice about what ideological frame we want to give to autism. And that can be a pathologized ideological frame, or it can be an identity-based, neuro-affirming ideological frame. And we have a choice about which one we accept.
And I think that the manifesto was around getting people to understand that there is a different ideological choice, and that this is an ideology. And we tend to think because it’s in the DSM, that it’s therefore a static thing, or that it’s a, that there’s a full stop there, that there’s a truth in that it is a disorder. And we know from other things and the way that the DSM evolves that it is not so; that what’s in the DSM reflects societal norms of the time, and it changes over time. And we have to be really mindful of that, because it allows us, then, to bring our focus to the fact that there is ideology. And as I said, we have a choice. So, the manifesto was all around reframing autism, and taking out what we think we know, and recasting it in ways that can affirm and build up our communities, individuals. And this is really important, because the more research that comes out around that link between when people, adults, and young people understand autism as a personal and a social identity, that builds well-being. There are protective factors against some of the elements of mental illness and complication that seem otherwise to be part and parcel of an Autistic experience, but they don’t have to be, with the right ideological frame. So, we actually have a duty of care if we are committed to building mentally healthy, physically healthy Autistic people, which I think everyone in the field wants to come in feeling like they’re going to, you know, build that kind of a person, that we want to build well-being, physical and mental well-being. That we have to then understand that our ideological choices also have consequences.
And so, pathologizing is not linked to protective factors against well-being. It’s not linked to predictive. And in fact, the more pathologized we are, the more broken we feel, the more and the more we mask, and again, we know about masking and all of the mental health implications of Autistic masking. So, the manifesto was about recognizing that we have an ideological choice, and trying to give people the language to make an ideological choice that is going to build up our community, that is going to foster our thriving and our well-being and flourishing in society, rather than contributing to that mental health crisis that many of us sort of live in because we’ve internalized the messages of ableism and pathologization and things like that.
Meg:
That is a really powerful framing. And I believe that you’re right, that at our core, most folks supporting Autistic people want to be doing something helpful, care about how our client feels inside, not just how they perform. And right now, I’m imagining we have a lot of students who listen to the podcast — OT students, SLP students, social work students — this is the piece they’re going to grab and charge into their professor’s offices with and say, “Hey, we’re teaching an ideology, and it’s not the one we should be learning because this harms people.” I appreciate that really, really very direct framing. When you talk about protective factors, I wonder if you could link this in for us to an Autistic child’s passions, the things they love. You have another oldie but goodie called ‘Passions and Motivations’. I’m going to quote you, you have a very powerful passage that says, “Each time we use an Autistic passion to motivate a child to do something they otherwise do not wish to do, we are setting their passion in opposition to their autonomy. We are juxtaposing a child’s desire to access their passion against their desire to decide for themselves about themselves, and that is profoundly concerning.” Can you expand on this a bit, and help us frame, like, what are the possibilities for embracing passions in a way that are meaningful and not coercive or harmful?
Dr. Melanie:
Yeah, look, and I think maybe I’ll start with that, you know. I’ve seen lots of times when passions can be used to engage and to motivate and inspire. And I’ve also seen lots of times when passions can be used to create relationships. So, one of the things that I think we — I talk about it a lot in education, but I think we all have, it’s relevant here as well, is that what builds the best relationships or what’s the best framework for our work with Autistic people is a relational ethics of care, where we deeply care about that Autistic person in front of us, deeply know that person, and that we have shared vulnerabilities and shared experiences, and we are human together in whatever work we’re doing with them. And that’s with children and with adults. And sometimes, I think we have this sort of objective, “Well, I’m, you know, a professional, so I have to have a, you know, particular boundaries,” and things like that. And boundaries are important. But I think we might have got to a point where we have sacrificed that relational ethics of care at the altar of, you know, basically our boundaries and objectivity and science, you know, evidence-based, et cetera, et cetera. So, I think passions are the things that create relationships for a lot of Autistic people. And this is not for all, and I’ve had people who say to me, “I don’t want to talk to a stranger about my passions, because they’re not really genuinely interested.” So, obviously, this is not, you know, I don’t speak for every Autistic person out there. But often, a child who’s invited to share however they choose to share, whether it’s parallel playing, whether it’s just being allowed to do something or whether it’s talking or sharing in other ways, who was invited to share their passion builds an enormous amount of trust and rapport between an adult or, you know, and a child, or an Autistic and non-Autistic, or a professional and a client, or whatever.
So, that invitation to share, to teach, to be given some autonomy over, you know, and some authority and to be valued for that passion and for that knowledge, those are all really important things to create relationships. So, I think there’s that sort of thing. And look, you know, I am not averse to using passions to engage and to motivate in terms of, you know, I think of my — I homeschool my children, and I think of, you know, what I, how I make them, their learning, meaningful and relevant, is often by using things that are meaningful and relevant to them, which are their passions. So, you know, I have a Warhammer — I have two Warhammer themes. And so, you know, Maths is, you know, when you have to calculate. Now, I’m going to show you that I’m really not a Warhammer nerd at all, but you know, you’d have to calculate sort of armies and how those, you know, different points and tally and dice and data. That’s fabulous for Maths. I would never call it Maths, but it is fabulous to sort of teach those things. So, there’s tapping into passions because they make things meaningful and relevant. There’s tapping into passions because they create relationships. And then, there is what I often see, which is when we take a passion, and we use it as a way to motivate — either by promising it or by removing it — a child to do something that they otherwise would not want to do. And by doing that, we remove their autonomy. Because as I said in that quote, which was a good one. I like that one; I’m pleased with that one, like —
Meg:
You can use it if you’d like. [Laughs]
Dr. Melanie:
Thank you. [Laughs]
Meg:
You’re welcome.
Dr. Melanie:
We pitch our kids’ desire to access their passion against the desire to just, to decide what is best for their bodies and their minds, and who they are, and how they want to be in the world. And so, you know, we have this sort of awful place where we put our children in a lose-lose situation. They either lose their autonomy, or they lose their passion. And the thing that that does over time, and to be fair, I’ve seen this in schools, you know, where they’ll say, “Okay, so if you do this, then you can access an iPad and do something about your passion afterwards.” And eventually, that passion, for some, will become sullied; it will become less exciting, it will become less shiny, and joyful, and inspiring. And so, essentially, you know, we take away — a lot of us use our passions for self-regulation. So, you know, by taking, by trying to use passions as a lever for compliance, I suppose, we take away possible avenues for regulation, and for happiness, and for experiencing joy, and for experiencing flow and immersion. And again, if I go back to that, we want what’s best for the people we’re working with and the people we have these connections with, that’s antithetical. You can’t have — passions are so central to those things, and so is autonomy, right. So, we have to protect that as well. Self-determination is a right, and we need to be teaching our Autistic kids who will be discriminated against, and will be marginalized, and will have their autonomy stripped in many, many ways across their lives, likely, unless they’re in an extraordinarily supportive community, that they have a right to self-determination and to autonomy. Because that’s so important that we teach them those things.
And the other thing, and I go back to, I mentioned masking before. I think when we start to, you know, use passions, as I said, by their provision or removal contingent on an activity or a thing, we promote masking, we promote inauthenticity. And we know more and more, there is more and more research that’s coming out that links masking with poor mental health outcomes in adults. And when we start that young, when we start that pattern of masking young, we are setting our kids up — we’re not we’re not setting them up for success, we’re setting them up for lifelong mental health issues. And again, if I come back to what our core business is, our core business is well-being. Our core business is outcomes. And so, I worry that we — sometimes it seems a convenience to use a passion because it is motivating, and because it will get us compliance in a moment. But it’s the long-term effects of repeated uses of that. And look, I’m not against a bit of bribery like, you know, if we have to have a blood test, I will say, you know — and I call it bribery, because it is, you know — “You do blood tests, and I will buy you X, which is related to your passion, at the end of it.” And I, you know, that’s my parenting choice, because sometimes there are some things in life that we have to do, that I understand as a parent, that my children can’t necessarily reconcile. And I don’t want to take away their autonomy, but I also understand the really deep need for that. But, you know, I name it and I apologize for it, that I’m using their passion as part of a bribery because I don’t know what else to do in this situation that is, you know, it is a lose-lose situation. And so, at least if you can name some of those occasions that might need to take place, I think that’s maybe mitigating some of the damage.
Meg:
I think there’s a very, very big difference between a parent using some sort of bribe because they need their child to get a blood draw, and a therapist doing that because they want the child to try to write their name. I talk a lot on my platform about not using hand-over-hand, not moving a child’s body, and I usually try to clarify that I am talking to therapists. I am not talking to parents. Like, you have to get your child into the car seat, and you have to buckle the seatbelt, and you have to brush teeth. There’s a lot of complicated and important situations that parents are navigating. But the goals that therapists are setting don’t allow space for that kind of coercion, really. It is way more complicated when you’re a parent, would you agree with that?
Dr. Melanie:
Absolutely. And I think it’s so important to think about those goals. Because if the only way you’re going to achieve a goal as a therapist is through using coercive motivation and using passions, then that goal is not meaningful and relevant to the child. And so, what’s the point? It might be meaningful and relevant to others, but if the child is not, does not see them, you know, we, you know, there was always that stereotype again that Autistic people find it really hard to generalize outside of, you know, they learned a skill in a particular context, and then they couldn’t generalize? I have no research for this, but my feeling is that the only reason we can’t generalize is because we don’t learn that skill properly. We learn it because we’re told to learn it, not because it has any meaningful relevance for us. And when we learn something that is meaningful and relevant to us, we can generalize perfectly fine. But when we learn it superficially because we have been told, or we’ve been coerced, or it’s been given to us as a goal that we have to learn rather than coming intrinsically from us, we don’t generalize because we learn it at the most superficial level possible so that we can move on with something that is meaningful and relevant in our lives. So, you’re not going to get the same outcomes from goals that are not self-directed.
Meg:
That is so interesting. It sounds like sometimes maybe the production of that particular skill might just be a contextualized trauma response that you’re conditioned to do in that context.
Dr. Melanie:
Yeah, yeah. And you kind of, you do what you have to do to get through it and to learn so that you can get what you need to get, which is your passion, or you might, you know, your reward, or whatever. And then, but that’s not deep learning. It’s not learning that comes from a place of safety. It’s not learning that comes from a place of meaning or relevance. And so, what do you do with that? It’s not meaningful or relevant to your life. So, of course you don’t do anything with that knowledge, it becomes redundant as soon as it’s done. So, you know, so making sure that those goals are, you know, I think as a therapist, if you think that you’re going to have to reward a child into achieving this goal, then probably rethinking the goal is the better start. Because that’s probably not a meaningful and relevant goal for that child.
Meg:
Yeah, I think that’s right. And I’ve had so many guests on the podcast, Autistic adults, say, “The thing I wish had been different about my childhood is I wish I’d had more access to the things I was passionate about. I wish I had more time to explore those deeply. Because those led somewhere or they could have fled somewhere important for me as a person and in my life.”
Dr. Melanie:
Yeah, I mean, it’s a bit like you hear lots of people who say, you know, when they retire, “I don’t look back and think that I wish I worked more,” I think it’s the same, you know, I don’t think many Autistic people look back and wish that they had less access to their passions, you know. Like, I think we want those things that will build the joy in our lives and will build the well-being. And, you know, you look back, when you’re looking back, you want the things that are joyful. You want more of the joy, not less of it. So, I think just making sure that we are remembering. And joy doesn’t have to be laugh out loud happiness, you know. I talk a lot about serious fun. There’s a lot of serious fun that goes on with passion, and flow, and feelings around self-efficacy, because we know that this is something that we are good at, and we know a lot about and things like that, you know. So, joy doesn’t have to be a massive smile on your face, and giggling, and spinning, and flapping. There are different ways of experiencing joy. And I think having all of those things in our head as we’re working with kids is so important.
Meg:
Yeah, you’re right, because joy is also when you’re learning something that’s the right challenge for you, being presented in a way that’s meaningful, and you can feel yourself getting better at it, and you want to keep going, you want to keep learning. I experience secondhand joy when I watch children learn the right thing in the right way at the right moment. It’s lovely. I love how you’re bringing us back to our core values over, and over, and over again. Is our goal compliance, is our goal for the child to perform something for somebody, or to make it look like we’re good at our job because now they’re meeting neurotypical milestones? Or is our goal to care about that child as a person, and their experience, and the moments of their life that are that are happening? Is there anything else you’d like our listeners to gain from this conversation or any key points you want to bring us back to before we wrap up?
Dr. Melanie:
You know, I think professionals have enormous power in this space because parents often look to professionals for guidance, and for knowledge, and for the ideological frame for how they’re going to look after their child, for what best interest, you know, we talk about best outcomes and best interest and best practices. And these, again, these are static things. But most parents don’t have, or many parents don’t have necessarily a sense of what the best outcome for the child is. And we have to guide them to understand that the best outcome is to have the best Autistic child that their Autistic child can be, not a child who is not, you know, who is Autistic, but pretends to be non-Autistic. And parents come with very different journeys and very different cultural and contextual factors. And as professionals, there is so much power in walking a journey with parents, and supporting them to choose what ideological frame they want to operate out of, and how they want their relationship with their child to look. So, that’s one thing.
And I think the other thing is, you know, I think in the research and in the conversations, we just sometimes forget that Autistic people really can experience flourishing and well-being. That this is — it’s not anathema to us. We have the capacity to be well, and mentally and physically well, and to flourish and to thrive. We just need people to understand that it might look different for us, and work with us to understand what that might be, and what it might look like, and how we might achieve it. So, I think we all have that duty of care to pay attention to the lived experiential knowledge of the Autistic community so that we can sort of really attend to the aspects of well-being that are unique to Autistic folks. So, I think it’s just, you know, we don’t just want ‘good enough’ for Autistic people. We want, you know, we want the same as for any human, that real deep thriving, and come back to joy and well-being, and all of those words that I think probably, you know, seem a bit motherhood statement-y, but that’s what we should be, we should be striving for that. Not for ‘good enough’, or, you know, it needs to be — we need to have the loftiest expectations for the Autistic community and trust that we have the capacity to go there.
Meg:
Right now, I’m wishing I had heard that and only that in my lecture on autism in graduate school. I just want to start and end there, thank you so much. Okay, Dr. Mel Heyworth, tell us what you’re working on now, and where we can find you online.
Dr. Melanie:
Meg sent me these questions beforehand which is very good for an Autistic person to prepare. And I had a good giggle because I’m not on social media, I’m not on — I have no online presence, truly, because — I’m on LinkedIn. But I’m not actually sure that this is not considered social media. So, I am on LinkedIn if you want to find me, but I’m not active on LinkedIn, I just, I connect with people and then do nothing on the platform. So, I’m very inactive. I have a complex life and lots of different things going on. I’m doing a number of research projects at the moment. I’m doing my second PhD, which is very Autistic of me. And again, that’s in parenting Autistic children and the factors that influence our well-being as parents of Autistic children and as families of Autistic children. So, that’s very exciting. I’ve just finished interviewing 80 parents and having wonderful conversations with the most generous and fabulous participants. So, I’m very lucky and privileged to hear so many journeys. But there are lots of other little research projects around education and well-being mostly. And in Australia, at the moment, we have the National Autism Strategy, which is sort of a government thing. And the NDIS is our disability funding agency. And they’re doing, they’re undergoing a big review. So, there’s lots of advocacy projects at the moment. But as I said, in terms of finding me online, please feel free to go to Reframe Autism, that is the kind of conduit to, you know, a lot of our thinking and the collective community thinking, not just mine, but more broadly outside of just my brain.
Meg:
We will link to all of your work in the show notes. And also, I’m pretty sure that’s all anybody ever does on LinkedIn. You just join and then let it sit there.
Dr. Melanie:
I am pleased because I feel very bad that I never post or do anything. I just, it’s just, it’s just there.
Meg:
Your website is such an incredible resource and we’ll link to it, and your books, and your research in the show notes. Thank you so much for talking to me today.
Dr. Melanie:
Absolute pleasure, Meg. Thanks so much for having me.
[Ending music]
Thanks for listening to the Two Sides of the Spectrum podcast. Visit learnplaythrive.com/podcast for show notes, a transcript of the episode, and more. And if you learned something today, please share the episode with a friend or post it on your social media pages. Join me next time, where we will keep diving deep into autism.
