Interview between Speaker 1 (Meg Ferrell) and Speaker 2 (Dr. Monique Botha, they/them)
Episode 87: Preparing Autistic People for the Lives They Want to Live
[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 Ferrell, formerly Meg Proctor, from learnplaythrive.com broadcasting to you today from unceded Tsalagi territory.
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’, because this is the preference of most Autistic adults. Being Autistic is a part of their identity that they don’t need to be separated from. Join us in embracing the word ‘Autistic’ to help reduce the stigma.
Welcome to Episode 87 with Monique Botha. When I sat down with Monique, I had so much of their research and resources laid out in front of me and I had at least a dozen questions that I wanted to ask. And an hour later, I had asked almost none of the questions I had in front of me, and I had just finished one of my favorite conversations I’ve had about the deeper meaning of our work as providers. I love the conversation that unfolded between Monique and me. We sat and talked for another half hour after the interview and I wish you could have been there for that too.
I’ll tell you about our guest. Dr. Monique Botha is an Autistic research fellow at the University of Stirling who focuses on minority stress, community connectedness, and quality of life in the Autistic community. They’re passionate about equitable autism science and Autistic-led research. In this conversation, we talked about Monique’s identity as an Autistic wheelchair user and what we lose when we try to separate Autistic identity from disabled identity, and our clients’ other intersectional identities. We talked about what exactly providers should look for in research that guides our practice and why this really does matter. We critiqued the societal belief that people are only valuable if they’re productive, and we traced Monique’s own very dangerous encounter with this belief from their medical providers. And then, we explored what it would look like to continually return to the question that is the title of this episode — is the work we are doing preparing our Autistic clients for the life they truly want to live? I love this conversation. I’m so excited to share it with you. Here’s episode 87. With Dr. Monique Botha.
Hi, Monique. Welcome to the podcast.
Dr. Monique:
Hi, thank you for having me. It’s really lovely to get to talk to you today.
Meg:
It is lovely to get to talk to you too. I’m so excited to have you here. And I want to start by sharing a little bit about your story. Can you tell us how you came to do the work that you do?
Dr. Monique:
Of course. So, I am an Autistic psychologist. I’m a research fellow at the University of Stirling. And I sometimes joke that I ended up here by accident in that I didn’t know, when I was younger, I didn’t even really conceptualize that you could be a professor, which sounds a bit silly, but I’m first-generation university educated. So, I kind of, you know, when I went to university for my undergraduate, it was in social care practice. And at the same time, I worked with Autistic people in their families, and also did some palliative care for young and middle-aged adults. And I don’t know, like, my degree was really quite general, we did everything from like social care practice, disability studies, psychology, sociology, politics. And, you know, I was working with these families with Autistic children who were just chronically under-supported or unsupported. Their children were really struggling. And it wasn’t, I mean, all of these families were working really hard to support their children, but none of the services were there. And then, even when they had services, it seemed like a lot of the information that was out there was, I guess, wrong; really inaccurate. You know, it didn’t live up to the everyday experience of working with Autistic children. It didn’t match my experience as an Autistic person. So, there’s this big disconnect between what I was learning at university and what was actually coming into practice.
But I really hit it off with psychology. I fell in love with the discipline, despite all its flaws, and there are many. So, I decided to pursue a master’s in it, and it was a conversion masters. So, I moved from Ireland to the UK to do that. And I don’t know, I started with that and decided that a PhD would be a good idea, and managed to get some funding to look at Autistic people’s mental health in relation to minority stress. And then, after my PhD, I just kind of have stuck it out in academia, which is why I’m now a research fellow at the University of Stirling. So, yeah, I guess what kind of got me into the field was seeing how much, I don’t know, how under-supported Autistic people were in their everyday lives. And then, also seeing the massive gap that there’s all this theory out there, there’s all this research. But actually, none of it translates, none of it really gets to the heart of what Autistic people need, or even what it means to be Autistic. So, I just kind of wanted a chance to shape some of that kind of field. So, yeah, it wasn’t ever, I don’t think ever sat down and thought, you know, this is what I want to do with my life. It just sort of happened step by step.
Meg:
I really love the organic unfolding of that story. And I think it’s really interesting the role of lived experience in folks starting to counter what we’ve always been taught about what it means to be Autistic. In our last podcast episode, our guest who is a licensed professional counsellor, said that — they were non-Autistic — and learned to challenge what they were being taught about autism only after making an Autistic friend who was a colleague of theirs, and then they kind of went, “Wait a second, this isn’t right.” So, in both cases, lived experience, kind of coming up against what we’re being taught professionally. Which highlights, and we know this that’s why we’re all here again and again the importance of being curious about learning from the experiences of the people that we’re supporting, including those with different intersectional identities. So, you’re a non-binary person, you’re a wheelchair user. How have those identities impacted you personally and professionally in relationship to understanding Autistic identity? Let’s start with being a wheelchair user.
Dr. Monique:
Wonderful. So, actually, I think to begin with to answer this, one of the things that comes up a lot is whether or not autism is a disability, right. And you have a lot of conceptualizations of autism as, you know, ranging from everything from disorder to difference disability. And from my perspective, I very much believe in the disability model. I don’t think it’s necessarily down to individual impairments. But I think it’s a mix of things including person-environment interaction. I’m a wheelchair user, which means that there is one thing that I can point to, you know, something that could almost be labelled in individual impairment. Like a lot of Autistic people, Autistic people are more likely to have Ehlers Danlos Syndrome, which is a connectivity tissue disorder which affects collagen. And it turns out that most of your body is made of collagen. So, you don’t, you don’t really want something going wrong with collagen, but it affects everything from internal organs to skin, joints; basically, your whole body. And one of the ways that it affects me is either partial or full dislocations. And that’s one of the reasons that I use a wheelchair because walking is exceptionally painful. I can’t do it — well, I used to be able to do it over kind of short distances, that sort of thing. And actually, when I was younger, I was on a track team. But I was told the whole time that the pain was in my head, I was told that I was making it up, that, you know, I just couldn’t cope with real life. You know, and I actually got told to go do sports, but the joint pain got worse. And then, I also ended up with postural orthostatic tachycardia.
And I reached a certain point. And walking just wasn’t as important to me as not being in pain. And using a wheelchair, for example, is something that means that I can move through this world without experiencing crippling, really debilitating pain. And it freaks some people out. Some people get weird because, you know, they don’t like to frame using a wheelchair as a choice. They don’t like to think that a wheelchair user can be ambulant, you know, can stand up or move, sit down into the wheelchair and use it. You should see the looks I get sometimes when I stand up on my wheelchair. People, like, people panic. You should have the furore on Twitter after the Doctor Who episode here in the UK where there was an ambulant wheelchair user in it. People are like, you know, it really ruined it that she moved her leg. So, people get uncomfortable when they realize that it was a choice for me, that I could continue trying to get around the world in one way and exist in unbearable amounts of pain, or I could use a wheelchair and be in a lot less pain. And actually, there are parallels here that have always informed my work with autism and my approach to autism research.
And it’s one of the reasons actually, that I think it’s important not to separate autism from the idea of disability. So, I am disabled. Like, inarguably I use a wheelchair, I’m Autistic. And they’re not neat identities. They’re not discreet. They’re messy, right? Like, I try explaining this sometimes. And it’s so hard because you have people with physical disabilities who think that the grass is greener on the other side, and vice versa. So, a lot of Autistic people, a lot of neurodivergent people have this idea that wheelchair users have access to all of these resources for this physical disability that is just not true. And a lot of wheelchair users, similarly, kind of think that, you know, Autistic people or other neurodivergent people are getting access to all of these resources that they have struggled to get for years. I mean, when the parking — I don’t know what it would be called in the US. But in the UK, it’s the blue badge. You know, you’ve got to apply to it to get the use of disabled parking in the UK. And a while ago it got extended out to Autistic people in their families, for young Autistic children who might be, for example, at risk of running across the carpark, right. So, the closer you are to the shop, the easier it is if your child is a flight risk, and you’re worried about them getting knocked down by a car. And there was so much anger from like physically disabled people who thought, you know, but why do you need it? And it’s so weird because I sit in this space. I’m Autistic, I’m a wheelchair user, we are fighting the same battles all the time. We are fighting the battles for acknowledgement, for proper resourcing, for making sure that we have our basic needs met. And one of the reasons that I’d be so hesitant to separate autism from disabilities is there is this, you know, few 100 years of activism in making the world a better place for disabled people. And Autistic people need that. These are fights that have then been fought long before we even had a word for autism.
You know, we’ve only really conceptualized autism within the last 100 years. We’ve only had disability rights, you know, in one way or another for 25 years sort of thing, maybe up to 50. It’s all novel. And if you can’t build together, you end up creating systems that only work for one group of disabled people. And they’re not discrete. Autistic people are more likely to have physical disabilities, poor health. You know, there’s an emerging research that shows that we are more likely to have like non-communicable diseases. So, things like high blood pressure, heart disease, Ehlers Danlos Syndrome, fibromyalgia, a bunch of like potentially immune-diseases. If you start kind of separating disabilities out into, you know, these discrete camps, you forget that people exist with both in the middle. And we live in a society that isn’t really willing to make adjustments for any kind of disability. But I think that there is a lot of, like, resource guarding that happens. People think that, “Oh, you’re just extending this up to one or two people who don’t really need it.” And there is that kind of fierce territorialness that comes with years of austerity, essentially. And when people think that they aren’t getting their needs met but someone else is when they fought for so long, it can create that kind of — I’m trying to think of the right word, but almost like a defensiveness.
Meg:
Territorialism, maybe.
Dr. Monique:
Exactly. But the reality of the situation is that I don’t think that there is any group of disabled people, at least currently in the UK, that is having their needs met. And it’s easy to split us off, split us up, and make us each fight individually. But that’s ineffective. And that’s the kind of thing that’s informed my work. I can’t split myself up into small parts and derive any meaning from that. First and foremost, I am, you know, I’m disabled. What you want to name that, what you want to call that, and how you want to name that, you know, is the second thing after that. The first thing is that I’m disabled, and I have needs that aren’t necessarily traditional, aren’t necessarily met by the society. And I’ve had to fight really hard for that and had to have those needs met and have my community’s voices really be given a platform. So, every chance I get, it’s about solidarity bonding. Because I think the same people who fight actively against disabled people, you know, they are the people who are very quick to pit us against each other. I can’t separate out those disability identities because, you know, to me, it’s one umbrella.
Meg:
Thank you so much for sharing that perspective and for taking us all the way through into how impactful it is, not just how it’s dehumanizing and unfair to be asked to compartmentalize your identities like that on a personal level. But then, on a systemic level, the really profound impact that that has. I want to refer people back to Episode 57 with Dr. Mel Houser if they’re interested in going even deeper into the medical issues that Autistic people are more likely to experience and how those are often missed, or ignored, or not properly cared for. Mel Houser is a primary care physician who’s Autistic. So, it’s a great episode. And I was also thinking, Monique, when you were talking about being a wheelchair user who could theoretically walk but you’re making a choice that this is the right way for you to move your body through the world and so clearly is, it reminded me of Alyssa Hillary, who was on Episode 36, who’s a part-time AAC user. And there was a lot of parallels there with “Why are you using this if you can sometimes talk?” And Alyssa is explanation of that was lovely and ran very parallel to your description of being a wheelchair user.
Dr. Monique:
It also makes me think about masking and the expectation. I think there’s a pressure in the world that if you can do something, if you can make yourself do something, it doesn’t matter how uncomfortable or painful, it doesn’t matter the cost, if you can be like other people, there is an expectation that you will use your energy and your time and your resources into doing those things. And it almost upholds this illusion, right, this illusion that the world can be and should be homogenous, that with just a little more effort, pulling yourself up by the bootstraps, by like emptying all your resources in, that you too can actually be normal and that normal is this good thing, this ideal state. And you see that kind of cost benefit because there are — I know that a lot of the time when masking comes up, people like to think of it as black and white, you know, as like, you know, 100% a bad thing. You know, and it’s, I think it’s actually a lot more complicated than that because masking is also survival. Masking is sometimes getting what you need from a situation by playing into something. It’s identity management. And yes, it does relate to things like stigma, discrimination, a lot of really negative things. But actually, I think that Autistic people are incredibly resourceful, and also use it to try and get their needs met in a really hostile world. But you can also reach a point where you decide that actually, the illusion is not worth it.
So, like, for example, for me, the amount of pain that I was in — the first time I ever used a wheelchair, I was in an airport. And we decided that we would use special assistance for me. And instead of walking through the airport, I used one of the airport wheelchairs. And it was like this fog lifted. My partner was pushing me. We stopped at restaurant type thing to eat before getting on the plane. And I could actually have a conversation, right. I was like, you know, most people are doing this. And I don’t think it’s like walking through fog or mud or cement that brain just goes but by not pushing myself, and I’m like — to walk through, I think it was Dublin airport, which has like an endless terminal. Like, it just, it just keeps going. I could actually focus on things that I wanted to focus on, like the act of being upright. When you have tachycardia, so my heart, like when I stand, can go up like 160 or 170 beats a minute, right, just standing. My joints, it’s like they grind on each other. And they’re just about to like the pop out any moment. And the act of buying into that illusion of healthiness, was making me so sick. Just by using a wheelchair, I could move around without my heart rate being like a million miles an hour, without my joints screaming at me, and I could actually hold a conversation.
But it breaks the illusion. It breaks the illusion that we are homogenous, it breaks the illusion of me as, you know, a healthy young person. And people respond really weirdly to seeing like a young person in a wheelchair because it’s almost like, oh, no, that’s, you know, ill health is for old people. And you’re like, you might want to unpack that a bit. But yeah, it really jars with people. And that’s why I refer to it as an illusion. Because I think everyone wants to create this idea of a society where it’s based on meritocracy based only on our decisions. If we looked after ourselves properly, we will never end up disabled. You know, disability is about individual choices. And I think people would rather have seen me on a track in pain without a diagnosis, upholding a notion of what it means to be young, healthy, and fit than in a wheelchair and pain free. Because they’re just, they can’t handle the idea of a young disabled person. That, to them, is the waste.
Meg:
What a dangerous story we have culturally around disability. And you highlight so well the cost is so high. I think, you know, a lot of providers who listen to this podcast are trying to change the bar of where we accommodate instead of remediate. I even think about as a school-based OT, my Autistic first or second graders with lax joints who are struggling to write, and how much pressure there was to focus on handwriting instead of typing, which doesn’t even make sense at this point, right, given how much of a life skill typing is. And you’re layering on to that like, yes, let’s make it more important the person’s use of energy, their life, their resources, their passion; what are we choosing to make important here? And then, on top of it, we have the society level of stigma that that person is going to have to face. And that’s a lot.
Dr. Monique:
Exactly. And I think we spend so much time trying to teach disabled people how to look normal that we don’t actually prepare disabled people for what it means when they grow up, right. And that doesn’t change regardless, like, being a wheelchair user, being Autistic. We’re not preparing disabled people for the lives that we actually want them to have because we keep trying to prepare them for the lives that are available to other people. And I don’t mean this in terms of setting. What I mean is we set Autistic people up to fail, right. We get young Autistic children in settings and we try to hammer in these normative skills in the hopes that they can pass, they can mask, they can go out and present their best neurotypical to the world, apart from the fact that that isn’t what’s going to give them a good quality of life, that isn’t what is going to give them meaning, that isn’t what is going to give them any sense of satisfaction. And in the meantime, they are losing out on the ability to learn real life skills. And I’m not even talking about like separating Autistic people and disabled people out and saying, you know, only go for vocations, that sort of thing.
What I’m saying is, for example, when I was a kid, I struggled so much for a while to tie shoelaces. And you see this in Autistic children, you see it in dyspraxic children, you see it with a lot of disabled children. And we get so hung up on it that we pretend that Velcro doesn’t exist. And it’s the same. We get hung up on milestones. We get hung up on these tasks that don’t, that don’t translate. When I was in school, I was terrible. But because I’ve got a PhD now people tend to think that I was like an A+ student, that everything went well for me. But I was, at that point, I was undiagnosed. I think teachers knew that there was something but they didn’t have words for it. And I was a bit of a disturbance, but in a very nice way. As in like I was distractible, but I was laughing, right. I was, I flew under the radar for so long. And I ended up failing one of my leaving studies. I was like, I didn’t, I didn’t get — in Ireland, you get like points for each of your exams. I didn’t get enough points to go to university for like any of the courses that I had applied for.
And I was quiet enough that no one felt the need to really intervene, right. Because they were what you’d call, you know, those troubled kids who were more disruptive or who, you know, weren’t getting the needs met. They kind of were a spanner in the works to like the functioning of a classroom. And I don’t think any of them ended up getting their needs met either, to be fair, like none of us did now that I look back at it. But they would get so hung up on me learning specific skills, not because it would do anything for me, not because I would, you know, none of them, particularly one teacher thought I was good from like the rest. The rest did not. They would teach me the most pointless things, genuinely the most pointless things. And it was a tick box exercise. We were just meant to kind of learn specific things and leave their school eventually. And I see it happening with the Autistic young people in my life now and they will, they’re getting ready to leave schools, but they’re not sleeping. They’re self-medicating. You know, they focused so hard on writing even when they have dysgraphia and it’s painful for them. But no one’s really intervened to give typing lessons or, you know, their friends are kind of growing up in these normative ways and they’re starting to see these gaps. And we do nothing to address it.
And the more that I look back on how I grew up, the more that I see other neurodivergent young people in my life going through the school process, the angrier I am about the fact that we don’t equip disabled people for what it will mean to be disabled in this world. We just try to teach them to look neurotypical. And then, there’s this cliff edge, they finish school and we basically push them off out into this world. We don’t teach them how to advocate for themselves, or that they’ll have to. We don’t, you know, we don’t give them any positive identity to build a sense of self on. We have all these negative images and messages around disability. And then, we basically drop them into the shark tank that is society and pat ourselves on the back, because it’s fine. We got them through a mainstream school, you know, it’s fine. They only failed one of the Leaving Cert exams, it’s fine. They have no real prospects in this world. But it’s okay because, you know, they’re still alive. The bar that we have is so low, it terrifies me sometimes.
Meg:
It is so low. And they’re learning from, you know, from a very young age, from the adults in their life, what matters. And if no one’s making their like basic needs and well-being and self-identity the most important thing, then how are they as adults going to learn to prioritize being well? Rachel Dorsey who’s an Autistic SLP teaches our goal writing course. And she’s in the process of completely rewriting her course after reflecting a lot on how our goals don’t change based on how well or poorly our client is doing inside of themselves. And I love this point she’s really starting to teach, if that person’s in crisis, if they’re in meltdown, if you have to write these developmental goals, make them as small as possible. Like give that person as much time and space in the next year to focus on resting and feeling well. And making that important. I’ll say, as therapists, when we come in and we start teaching someone who’s hurting, who’s struggling, who’s not feeling acceptance, and inclusion, and value, and we start trying to teach them these developmental goals, I think that’s what makes us hate our jobs, too. Because it feels bad. And we can’t always figure out why, and it feels not meaningful. And we feel like part of the problem even though we’re trying to do our job. And then, as a parent, I don’t think I fully recognized the harm of trying to categorize a child in all of these boxes of developmental milestones until my kids got their first progress reports. And I looked at them with their dad, and with my partner, and we all looked and went, I hate this, I hate this. I absolutely hate this. Like this is, this is harmful, period. And my kids are not disabled. And I could still just feel the horror of somebody checking boxes to assess a human’s growth and development.
Dr. Monique:
I think there’s a, there’s a really fantastic book that I highly recommend, and I’m not paid to recommend, but I’d recommend for free. And it’s Robert Chapman who wrote ‘Empire of Normality’. And it’s about the history around the idea of normal, and what function it serves. And kind of it goes into some of the history around like the bell curve, and why we decided plotting people against a bell curve was a good idea. And it has a lot to do with essentially capitalism and making productive people, right. And about the idea that everything is okay as long as you are productive and producing and generating wealth. And this is really important, because it tends to be the — it tends to be the bar that we judge disabled people and Autistic people against. So, instead of thinking about things like quality of life and what will actually be a good life, we tend to think in terms of what is a productive life. And it’s one of the reasons that I’m really anti functioning labels. It’s one of the reasons that I rail so hard against the notion of profound autism. And it’s because people try to separate Autistic people into the good Autistic people, and the bad Autistic people. And it has been since basically like the dawn of the idea of autism. We’ve split Autistic people up into those that we deemed to be productive members of society, and those who aren’t.
Funnily enough, when I was a teenager and I was like flunking in school, and I was going from like, mental crisis to mental crisis, you know, I was melting down. I was in such a bad place. And I was being seen by the mental health services. But that in itself was such a fight. And at that point, one of the psychologists there basically said that I was, you know, I was the kind of person who would probably die to suicide anyway. And it was, there was this idea that, no matter how much they intervene with me, I was just self-destructive, I was this, I was that. And it was, it was genuinely awful to hear. Rather than actually, like, work with me. They gave my parents a choice to either, like, put me on medication. And that was, that was it. And there was a lot of misinformation around medication available to me. So, I thought it would like change who I was as a person and, you know, was like, absolutely not. So, then they made my parents or my mother sign a waiver saying that if I did lose my life to suicide, it would be her fault for not making me take medication.
And at that point, if someone had thought autism, they wouldn’t have put me in the same place on the spectrum as they would now. Because now they see me, I’ve got a PhD, I’m a research fellow. Yeah, I publish, I do research, I do this, I do that, I even get to travel around the world giving talks sort of thing. They’d be like, “Oh, no, but you’re, you’re the high functioning kind. You’re like, you do so much,” right. But if I’d been diagnosed at 14, mid-crisis, if I’d been diagnosed even younger as a child and how I was as a child, I wouldn’t be diagnosed with the same kind of autism that I was even in crisis at 20, right. And you see this pattern. And again, it comes down to wanting to put people in boxes. If people can go out there and essentially be good, normal members of society, then there is a kind of Autistic people that we might be able to afford. But only if you don’t ask too much of us as a society. If you have additional needs, let’s say that you have a learning disability or an intellectual disability, let’s say that you need more help with activities of daily living, you know, maybe you can’t live independently, maybe you need additional help and you will never work a day in your life, for example. There’s a readiness to label that is profound autism. There’s a readiness to say that that is the kind of disability that society cannot afford. Now bear in mind, I live in what is either the fifth or sixth richest country in the world.
The idea that we can’t afford a person or a group of people is, I think, a fallacy, first off. But the readiness to split it is based on what we think people will do for society, right. It’s instrumental. It’s, can I use you as an instrument? Can I objectify you? Can you generate wealth? Okay, great. I like you. And when you can’t, there’s this idea that your life is meaningless or worthless, and that you don’t deserve a quality of life, that you don’t deserve to live, that you don’t deserve equitable participation in society. Because apparently, the goal of all of our lives should be work. And originally when Hans Asperges published in this criteria, and it was only — I’ll say it was only uncovered that there were some of the previous translations of his work had left out a lot of context. What was published a few years ago shows that he himself designated some people as having utility and other Autistic people as not. And this is a pervasive attitude that still exists today. You know, in my research, looking at the attitudes that psychologists have towards Autistic people, the line still gets drawn at those who essentially can work. We like the Autistic people that we think of as savant. We like the Autistic people who, you know, people point to maths, engineering, science. But as soon as anyone needs any additional support, that suddenly becomes a life not worth living. I don’t know if I’ve rambled there and just gone so far past the point.
Meg:
No, it’s so important and such an important point. I think if we try to understand how our society looks at disability without putting it in the context of capitalism and people of means of producing and producing profit, it doesn’t make any sense. We’re like, but why is it like this? Why can’t we change it? Why is this so hard? And again, you’ve tied in this big picture, systemic problem with what it looks like on a personal level. What’s really — okay, your own experience of being told you’ll die by suicide is really disturbing. Compounding that is that you’re the second person on the podcast who’s told me they had that experience. I remember Kim Clairy saying something very similar from young adulthood, I think, as well. So, this isn’t an isolated experience. I imagine this is happening to lots of people. And I really appreciate you tying this in to how we as a society value people who can produce and produce for profit, which is dehumanizing for all of us.
Dr. Monique:
Exactly. And it also, you internalize that capitalism, right? Because when an Autistic person — Autistic people get praised when they manage to perform neurotypicality, and Autistic people get praised when they manage to perform production, you know, you get a job. It doesn’t matter how mindless that job is. I remember sitting in university in, I was still in my undergrad, and they were talking about a scheme where you can employ disabled people, particularly people with intellectual disability or learning disabilities. And the government subsidizes the wage. So, the employer only has to pay like a fraction of that. But they’ll do things like lick envelopes. I was horrified. I’m, like, still am. And it’s been years and I still am. We are so obsessed with work, we are so obsessed with employment statistics, that we will have people do the most boring, dehumanizing jobs, things that they don’t actually want to do, just to be like, “But look, we have this scheme.” We don’t actually slow down and ask people what it is that they want. We don’t, we don’t actually create employment schemes that are tailored to Autistic people, or people with learning disabilities. We don’t actually go out of our way to create pathways to meaningful employment. We do it to mindless employment; we do it to just tick the box. And we don’t look at outcomes in terms of quality of life. We don’t say, you know, we don’t come back to that person six months from now, a year from now, five years from now, and look at whether they are more fulfilled, whether they are happier, whether their mental health is any better. Because we don’t, we don’t care. We don’t care about the long-term implications.
And one of the problems that you continually see with Autistic people is they get pushed into employment for the sake of employment, and then burnout, have mental health crises, you know. And Autistic people are more likely to end up homeless. And the alternative is always this idea that being unemployed, needing to rely on state benefits, whatever it is, is inherently bad. That everyone has to and is motivated by the same goals that we just shove everyone in the door and we don’t actually look at what’s happening to these people in employment. We don’t look at what happens to us. We don’t question it. As long as we get Autistic people through the door, we don’t care what it does to Autistic people’s minds or bodies in those situations. So, it’s not meaningful employment. It’s not happy employment. It’s certainly not employment most of the time that contributes to quality of life. But it makes people feel a bit fuzzy because, you know, the statistics look good.
Meg:
Yeah, I really appreciate you anchoring us throughout this conversation to are we preparing Autistic people for the lives they want to live. And I’ll tell you in my head I have — I really like the poet Mary Oliver. And I have her words in my head as you talk, “Your one wild and precious life.” Are we going to make this about production, somebody’s one wild and precious life? So, thank you for really centering us there over and over again. What people don’t know, Monique, is that I have 14 questions in front of me about all of your writing, which is so impactful and so interesting. And I am loving this conversation so much that I’ve asked you about none of them, which I’m really happy about. And I would be remiss if I didn’t ask you anything about research before the end of this conversation. So, a lot of the folks listening are providers working on the ground to support Autistic people. And we are pushed in so many ways, towards evidence-based practice, research-based practice. And we know by now that that isn’t as harmless or simple as it sounds. I just want to ask you, if you could give us a couple of takeaways about research and what that could look like for us, what to look for, that would be helpful.
Dr. Monique:
I think one of the most important things when looking at research is to look, like, is it respectful? If it’s using dehumanizing language, then you have to bear in mind that language is the tip of the iceberg, right. So, underneath language are ideals, ideologies, and practices. If a paper is steeped in really ableist language, the ideologies that they bring to the table are really not going to be great, right. And that doesn’t mean that language is a fix all, right, but it’s just, it’s a starting point. If you have dehumanizing ideas about Autistic people, you’re more likely to use that dehumanizing language, aren’t you. So, I think that is like a red flag. Always look for either Autistic-lead or really Autistic-informed work. And that can look like, like, there’s some kind of like cursory involvement of Autistic people. So, it might be that they have an Autistic board, or a board, advisory board that has a few Autistic people on it. All the way up to this work has been formalized and led by Autistic people. The opposite end of that particular spectrum is that it’s neurotypical people or non-Autistic people, they weren’t consulted, they weren’t asked. And no one particularly cared about what Autistic people had to say about it. And that’s, that’s a dark literature over there, it’s not great. But there are horrible things. And a lot of it is really deeply inaccurate.
But once you find literature that is led, or deeply involves Autistic people, I think you’re gonna get closer to something that is meaningful for Autistic people. And that’s not to say that there aren’t non-Autistic researchers, or that there aren’t non-Autistic researchers out there doing really meaningful things. There are. Like I could list a whole bunch of incredible allies, don’t get me wrong. But rather, it’s a good kind of triangulation, right. Because one of the biggest problems with autism research at the moment, is that none of it triangulated on to Autistic people’s lives. And what that means is that we’ve had things, theories developed, all of that sort of thing. But when you sit down in front of an Autistic person, you can see that they’re blatantly false or have been translated. And that’s everything from like the idea of empathy in autism to theory of mind. You know, even a lot of the stuff on executive functioning didn’t actually translate well from like lab to real life. But where you have Autistic people working with these teams, including and being involved in things like interpretation of research, or how it might apply to their lives, you can actually triangulate in real time, not 50 years post-publication, not 20 years post-publication. And the thing is, we have a different way of looking at it because the kinds of things that researchers think are important to Autistic people often just aren’t.
So, if an Autistic person is actually working with as a research team from the beginning, they’re probably going to be steered in a bit of a different direction. And they’re probably also going to have results that are a lot more commensurate or make a lot more sense. And that will be, it’ll be easier to translate that into the context of Autistic people’s lives. Because there would have been an Autistic person at the table saying, “This is what matters, you know, this is what is important in these findings.” And you might think that in a field like autism research that there would be a lot of Autistic people involved. But sadly, that is not true. Yeah. I don’t know if that answers —
Meg:
Yeah, it does. That’s really helpful. I was thinking about our second guest ever on the podcast was Dr. Damian Milton, and I was just thinking about the cascading impact of him saying, “Hey, these things people are saying about empathy and Autistic people don’t resonate with me. Let’s study that.” And from there, we get the double empathy problem, which allows us to say, right, like, yeah, research shows that you’re right. If neurotypicals are trying to research Autistic people, we are going to misattribute, misunderstand, misassign, and we’re not going to know the ways we’re doing it. I’ve experienced this over and over and over in my own work, when if I’m teaching, and I’m having my Autistic consultants review things, I never, never would have guessed the places I’m off target without that constant feedback.
Dr. Monique:
Exactly. And I think it’s because people have this idea that — or some people — have this idea that autism can be separated from the person, hence the drive towards like person first language for some people, they genuinely think that it is not everything you are. I remember, during my PhD, when I was interviewing Autistic people, someone literally said, “Autism is me.” That was it. Autism is me. It’s everything. You know, it’s my perspective, it’s how I see the world, it’s how I interact with the world. It’s my body, it’s my brain, it is my way of relating. It is everything. And if we think about how much of a fundamental shift that is between being Autistic, or non-Autistic, you can’t even begin to imagine the way that the other person interacts with the world. And again, the non-Autistic person says something about their experience. And it just, you know, [whoosh] that is the sound of it flying over my head, and I never would have even pictured someone experiencing the world like that. Like, it just, it doesn’t, I can’t compute. And so, when I think about non-Autistic people trying to do especially like experiential autism research, like, bridging that gap must be really, really hard. But if you’re not willing to actually work with Autistic people to bridge that gap, it wants to be like trying to cross a river, and there’s no bridge. And it’s like, gushing, do you know what I mean?
Meg:
I do, yeah.
Dr. Monique:
No matter how much you, like, stretch —
Meg:
It’s a bad idea. It’s a bad idea, actually. Monique, I’m gonna circle back to one thing you said, which was about ideology. So, you said that we as providers need ideology, and are often missing ideology, which I agree with you. And I think a lot of folks may not have considered it in this way before. Can you talk about why we need a clear sense of ideology and what that means?
Dr. Monique:
I think it’s rather than needing ideology, it’s about the awareness of it. So, that there are so many people who think that you can have this view from nowhere, this sense of — actually, I’ve never thought about it like this before, but it’s kind of like people think that their God. They think that they can have a perspective as if they’re hovering above the world, free from the constraints of society and culture and time and place, and just see some objective truth. And the most terrifying part about that is the people who believe that give the least amount of reflection into how they might have created something. When you’re a researcher working with humans, you are creating the end product. I focus a lot on ethical science. And I see us going in the direction of thinking about like replication, open science, putting your data sets up, but we never actually slow down and think that there are so many steps in that process before you reach data, including things like how you frame a question, your interpretation of the existing data, the way that you set up and design a study. For example, the majority of studies into interventions with Autistic people have never measured harm. We don’t measure adverse events. To me, that’s a clear example of dehumanization, because it means that we don’t consider Autistic people to be harmable. We don’t even conceive that they might get harmed in the process. To me, that is a sign, a very clear sign, of a very malicious ideology in autism research.
The opposite of neurodiversity-affirming research isn’t actually this objective thing out there. But we like to, we like to make out that neurodiversity is political. And that the rest of the autism research out there is objective and scientific and non-political. But actually, it’s all political. The choices that we make in research are political. What we fund is political. You know, the way that we frame questions comes back to society and culture. A good example of this is the emerging work on like autism and gender. We live in, really, quite a transphobic society. So, the beginning place is to pathologize Autistic people’s gender. It’s not curiosity around why Autistic people seem to be more likely to be trans or non-binary. Straight away, it is to say, well, being trans is pathology, being Autistic is pathology. It’s, you know, clear evidence of pathology in Autistic people. I remember this study out there that looked at behavior, moral behavior in Autistic people or non-Autistic people behind closed doors and in public. And what it found was that Autistic people were more likely to behave the same in public and private, and are more likely to behave morally. You might think this is a good thing.
Meg:
But we pathologize that, too.
Dr. Monique:
We pathologized that, too. Because, you know, it was a deficit in impression management, because we should be out there being essentially smarmy, or whatever. Like, it’s so gross. That’s, that’s such anevidence, again, of a very malicious ideology in autism science. I think it is about awareness. It’s about knowing what your values are, and what you’re willing to put your name and reputation and resources behind. I don’t think that I am objective, but I don’t think I ever could have been. And I’ve talked about this before. I see people like me getting the worst from society. Autistic people are more likely to die by suicide, are more likely to die younger, are more likely to be sick, are more likely to end up homeless. Of course I’m not objective. I’m out there trying to make something that will help my community. But the non-Autistic researcher who’s out there publishing on genetics or behavior or whatever it is, they’re not objective, either. Because they have an ideology underpinned by this idea that autism is a disorder or a dysfunction, that Autistic people need to be cured, that there is no possible way that Autistic people could be involved in their work. All of that’s ideology, too. It just comes underneath a white coat. And we like to think of it is neat and tidy because, you know, it’s like self-awareness. So, yeah, I think ideology is what leads science but it’s about awareness, and who is aware, and why they are aware, and how willing they are to be transparent with that. Because you can’t unpick ideology from science. It is impossible; they go hand in hand.
Meg:
I love that, Monique. And I imagine that the folks who listen to this podcast are the people who are willing to engage in the process of self-reflection in an ongoing way, of what is my ideology? Is it aligned with my values? What is the impact of it? And I think it’s really useful to name that process. Before we wrap up. Is there anything you want to add or bring us back to?
Dr. Monique:
Just actually that last bit about reflection. I think reflection is meant to be messy. And we’ve covered so much in this short time between like quality of life, what we’re willing to afford to Autistic people, about bridging that gap between being non-Autistic, doing like work with Autistic people. But I think when it comes to reflection, people need to hold on to the fact that it is a messy process. And if it isn’t disruptive, it’s not doing its job. I have people who, after reading some of my papers, come back, and always feel the need to apologize to me, even though they haven’t done anything individually to me. They’ve taken part in a system sometimes that they then come to realize is destructive, or, you know, damaging or painful. And the process of that reflection, I think, for people often is painful, it’s uncomfortable. You know, even me. I’m Autistic, doing autism research, and a lot of the time I question myself, because it’s such a horrific system. There’s a lot of violence in the background. You know, Autistic people have been exploited and hurt repeatedly by research in the 100 years that we have like conceptualized autism. It’s a community who has been essentially repeatedly brutalized by researches. So, a lot of the time I question whether or not I’m even doing the right thing by contributing to the system.
If it doesn’t hurt, if reflection isn’t messy, if it isn’t complicated, if it isn’t in relation to all of the people that we interact with, then I don’t think it’s doing its job. And I see a lot of people think that by listing characteristics on papers, or by simply saying, you know, “Well, I’ll hold my hands up and say I’m non-Autistic,” or even just by being Autistic, but not really putting in the legwork for reflection, that I think we’re not really going to get anywhere, because we’re not really unpicking the social and cultural messages that we are taking into our work. It’s not only about our identities, which I think we’re getting more comfortable with like listing off. But it’s really about things like power structures, what we’re adding to, what we’re not adding to. And I think that that’s a lot less comfortable as conversation. People are less likely to really delve into some of those power structures because then it doesn’t become, or because then it isn’t as simple as thinking that because you have an identity, you have an ability to talk about something. I don’t know if that makes sense.
Meg:
It does. Yeah, it does. And I get emails from people who are like, I’ve been listening to the podcast, I’ve been thinking about my school’s practices around something like restraint and seclusion. I’ve been trying to challenge it. And now I’m so scared, like, people are mad at me, I’m in trouble. They’re making me question if I’m doing the right thing. Everything looks worse and worse to me, and gets more and more confusing. I just really appreciate you making space for this being a messy process, an ongoing process, a process that’s going to get pushback, that’s going to feel confusing, and it’s going to leave us questioning ourselves over and over again. And I hope that we can all have the courage to keep engaging in that process. I’m going to link to a lot of your work in the show notes because it’s excellent. So, that’ll be at learnplaythrive.com/podcast. But tell us what are you working on now? And where else can we find you online?
Dr. Monique:
I’m working on quite a bit, actually. But one of the things that I think I’m actually most proud of at the moment is that I’m working with a colleague, Dr. Amy Pearson. And we’ve been doing research into Autistic people’s experiences of intimate partner violence, and how services can be better shaped to support Autistic people. And given how much more likely Autistic people are to experience things like intimate partner violence, I’m really glad that I’ve been able to kind of do some work and be part of that work. And some of that work will be forthcoming in the next few months. And then, as well as that, I’ve been working with a colleague of mine, Dr. Eilidh Cage, and we set up the — and Dr. Catherine Crompton, actually, sorry. And we set up a Participatory Autism Research Network in Scotland called STARTS, which is the Striving to Transform Autism Research Together Scotland project. And we have a website, I don’t know that there’s particularly much on the website, but we did a study looking at Autistic people who live in Scotland, what their priorities are for autism research. And lo and behold, it does not match the research that’s been published at all. And over the next year, we’ll be doing some more research that kind of matches what Autistic people want from research. And then, aside from that, I’m continuing to do work on how psychologists or researchers — or researchers, more generally — view Autistic people as part of my fellowship and work. Well, it’s not necessarily the most like uplifting topic, because I don’t think researchers like us very much. But again, work will be forthcoming from that over the next few months and well into the next year and a half. I’d love to say that you can find moniquebotha.com. But all you will find is a slightly outdated website. And that’s kind of about it. I’m on Twitter. But I think we all know that’s also very contentious right now and not the best place to be, so yes.
Meg:
Thank you so much, Monique. I’ll link to everything in the show notes. And I would love to have you and Dr. Pearson back on the podcast to talk about intimate partner violence at some point. It’s such an important topic.
Dr. Monique:
Absolutely, it really is. And I think that there’s, yeah, that is an entire show in and of itself.
Meg:
Absolutely.
Dr. Monique:
There’s a lot to unpack.
Meg:
Yeah, thank you so much for all of your work and for your time today.
Dr. Monique:
Wonderful. Thank you.
[Ending music]
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