NeuroDiving

Introduction

Amelia: Chloe Farahar is a productive irritant. She’s always poking holes in other people’s unconscious assumptions.

Chloe Farahar: …and I used to annoy my lecturers, as you can imagine. I want, I aim to be a productive irritant, like the late Dinah Murray. That is my plan, to be a productive irritant. So I would ask really annoying questions. So somebody would come and present their theory of something or other, and they've got all this funding, they did this research, and it sounded really interesting. I was like,

“That's great. Now what? What are you going to do with it?”

“What do you mean?”

“Well, what are you going to do with it? What's the practical application? Why are we..?”

Because you know, learning for learning's sake, okay, that might be useful for some things, but not when we're dealing with humans, I don't think.

Amelia: When I first met Chloe, I mistakenly referred to them as an Autistic autism researcher. But that wasn’t quite right.

Chloe: I'm not an Autistic autism researcher, I'm an Autistic researcher who's interested in Autistic people and their experiences….

So when I say “autism” it's in quotation marks. Very briefly, to make that make sense (because I will talk, I'll kind of refer to it in other questions). But for me autism doesn't exist. It's an abstract concept. It was conceptualised by non-autistic people as a checklist of sort of observable behaviours that a lot of us in the community would argue are distressed autistic behaviours, not what it means to be Autistic. So when I refer to “autism,” if everyone just imagines I call it in quotation marks, whereas to be Autistic is much more tangible, they're people that you can, you know, potentially interact with or see or what have you.

Amelia: Chloe thinks that the general concept of autism is just an abstraction. And they worry that this abstraction has become a distraction—it distracts researchers from actual Autistic people, and from what would actually benefit Autistic people. So, um, let’s let Chloe introduce herself properly.

Chloe: OK, yeah, so I'm Dr. Chloe Farahar.

Everyone just calls me Chloe, or some people call me Dr. Chloe, which is very strange because I'm not a TV, like, personality.

Um, I am an Autistic academic. And I always say the Autistic part first because it actually changes how I am as an academic and all these kinds of things. So my research interests are around a lot of the things that I'm particularly interested in as a person.

Amelia: Chloe wears many hats. She’s currently a specialist facilitator for the National Autism Training Program in the United Kingdom, which involves training healthcare workers who serve Autistic people. She’s also a postdoc at Oxford, where she’s researching adverse childhood experiences and mental health. And she’s one of the founders of Aucademy, which offers all sorts of free online educational materials about autism. And she’s currently writing a paper about a new way of conceptualizing the autism spectrum. And doing all this work, as an Autistic person in academia, is exhausting.

Chloe: So it's been quite challenging, so struggling with things like being appropriately considered in terms of, you know, I am a disabled person, I'm Autistic, it's a dynamic disability, which means I'm disabled more in certain situations and contexts and days than others. So, you know, I guess trying to get people from other universities, particularly academics who have this idea about what it means to be professional, for instance, and it's like, just trying to ask for, “can we just have the documents in a font that I can read on a non-white background? That's it, that's all I'm asking for.” And things, like, that I think are quite straightforward, quite basic that would actually help.

And it's just, yeah, it's that very neuro-normative sort of abled, if you like, so non-disabled perspectives that impact me, I guess, more. I'm alright, I can have a debate with people if they've got different perspectives on theories or, you know, disciplines and things like that. I think it's the general, just, being a disabled Autistic person trying to work in a field that's exhausting and has particular expectations and standards. I think that's, that a tough one.

Amelia: This is NeuroDiving, a philosophy podcast about neurodivergence.

I'm your host, Amelia Hicks. In this episode, let’s get our bearings. What the heck is going on in autism research?

The Current State of “Autism” Research

Amelia: Chloe’s experience–and her exhaustion, and her frustration–reveals a lot about the current state of autism research. I’ve heard the field of autism research described as a “field in crisis,” plagued by conflict between researchers and the Autistic community. I don’t know whether “crisis” is quite the right word for it, but the field of autism research is certainly at a turning point, because more Autistic people are beginning to do autism research, in spite of how inhospitable academia can be.

Chloe: Largely you've got sort of two camps….

So that would be the non-autistic autism researchers versus the much smaller camp of Autistic researchers who are doing Autistic research.

Amelia: First, there’s a huge camp of non-autistic autism researchers doing mainstream autism research.

Chloe: So autism research typically, it's largely around “why do we exist?” It's, you know, where is autism in the brain, in the DNA, in our genetics? Spoiler alert, everyone, we don't know. After all these years, all the probably millions and millions of pounds or dollars, you know, we don't know because we're complex, we're human and it's not that straightforward. So, yeah, I think a lot of it's around why do we exist? Why do we do the things that we do?

There are, I saw it the other day, they're still… people are doing studies with eye gaze or eye tracking, you know, looking at where do Autistic people look? And it's like, why does it matter?! Why are we so obsessed with eyeballs? It's very strange. You know, studies looking into basically how to intervene in our development and adjust our behaviours.

Amelia: So that’s camp number one, a large group of non-autistic autism researchers, who are working hard to figure out what causes autism, and to figure out why Autistic people do the atypical things we do. Then there’s camp number two.

Chloe: Yeah, that smaller number of Autistic led Autistic studies, um, those tend to focus much more on what Autistic community members want, what families want in terms of research. So it's very rare, or not as often, in the UK at least, when I've seen studies that have asked different stakeholders, including families, you know, what research do you want to be done for Autistic people? And the genetics part, the “why we're here,” it comes down very, very low on priorities. The priorities are what do we find adverse (so like, adverse childhood experiences), how can we improve therapies and services so that they actually work for Autistic people (because we're different, so we need those therapies to be different). Issues around employment outcomes, how can we change employment settings. A lot of it's around discrimination and, you know, really interesting pieces of research like the “thin slice judgements”; you know, non-autistic people making very, very quick, unconscious snap decisions that they dislike the person in front of them who happens to be Autistic. And it's like, right, that's a really interesting piece of research, it's really important. How do we now work with what we found to, and that's what a lot of social psychologists might do or community psychologists, how do we use that to not change the Autistic person, but ask those people to just consider their biases when they meet somebody?

Amelia: So in the field of autism research, there are two main camps. There’s a huge camp of people who are doing mainstream autism research, and then there’s a tiny group of Autistic researchers who are striking out and pursuing new research questions, research questions that often focus on how we can change social environments in order to promote Autistic flourishing.

Tensions Between Researchers and the Autistic Community

Amelia: There are real tensions between these two camps. And there are tensions between mainstream autism researchers, and the Autistic community more broadly.

Chloe: So obviously if you've got a group of people who are arguing that the research questions we should be asking are:

“Where is autism in the body and the brain and the DNA and the genetics?” um, you know,

“Does that mean we can create prenatal screenings if we were to find it?” um,

“Why don't autistic people make eye contact?” um,

“How do we change their social skills so that they're more in line,” they don't say it this way, but “more in line with a non-autistic sort of neuro-normative expectation of social skills?”

So when they're then being confronted, particularly some of the researchers who are autism researchers, who’ve been doing this for maybe a few decades, and they're being confronted by people saying,

"That is not what we want. We don't like the research that you're doing. We don't like the research questions. We don't like what it's saying about Autistic humans and how dehumanizing it is and how harmful the narrative is.”

Because it all gets filtered down. It all, you know, research ideas get filtered down and sadly in a very, very simplistic way as well, so you don't even get any of the nuance of the, you know, people who are criticising that literature and saying “why?” and things, and it all gets filtered down into society, and then that dictates a lot of how people are going to treat difference as well. So I think the tensions there are, if you're an autism researcher and you're being confronted by people saying "what you're doing hurts us."

That must be quite hard to hear, I think.

Amelia: Autistic academics, along with lots of other Autistic people, are criticizing mainstream autism research for perpetuating dehumanizing myths about autism, and for pursuing research that Autistic people find threatening.

For example, there’s a project called Spectrum 10K that proposes to get DNA samples from 10 thousand Autistic people in the United Kingdom, and use that genetic data to explore the causes of autism. But the collection of all that genetic data–often from children–is deeply concerning to many Autistic people and their loved ones.

Chloe was involved in a movement called Stop Spectrum 10K, which called for a reevaluation of the Spectrum 10K project.

Chloe: So I think tension comes there from the Autistic community because it's just not the research we want.

So our community goes on social media and tells people that we're not happy about this. And, like I say, then we do things where we come together when we did Stop Spectrum 10K, a small number of us were Autistic academics, a lot of us weren't, a lot of people that you know were part of that are advocates, activists, with their own young people. All sorts of backgrounds just coming together and saying “we're not happy about what you're doing. Why is,” I think it was like “4 million pounds going into a project like this? Give that to Autistic people so we can actually have some services or that we can see research being done that we want to see that will actually help our wellbeing in our lifetimes.”

Amelia: But often, when mainstream autism researchers receive this type of criticism, they double-down.

Chloe: And then those individuals are going to have to either, if we go to cognitive dissonance, so for those who aren't sure or heard of cognitive dissonance before, it's where you hold an attitude or a belief or a perception that's at odds with your behavior, for instance. So if you've been confronted with the attitudes of others saying what you're doing is wrong, you either have to change your attitude or you change your behaviour. So those individuals could stop doing that research. They could shift to doing the research that Autistic people and their families are actually asking for, or they can double-down. And they can say, no, what we're doing is important. It's relevant. This is what we got funded for. All these kinds of things.

Amelia: In response to the backlash, Spectrum 10K was paused for a while. But now it’s up and running again.

But Things Are Changing

Amelia: Still, the world of autism research is starting to change, at least a little bit.

Chloe: But yeah, we're certainly starting to see much more openly Autistic people in academic positions, in research positions. So I would say that's encouraging. It's exhausting, again, it's hard work, it means we're in these areas that are really disabling for us. But a lot of us are doing that because we want to see the change that we need, I guess. And so you're going to be seeing, and we have started to see, much more research into the areas that the community actually wants and needs. So again, around how we get treated, how can we change, potentially, how we get treated and get people more aware of their biases towards difference?

So yeah, we're starting to see those shifts, which is very exciting.

Amelia: Now, some people might not be comfortable with the idea that Autistic people, many of whom are not scientists, are beginning to shape the way autism research gets done. You might wonder, “shouldn’t we just leave science to the scientists?” But simply “following the science” won’t work here, for two different reasons. First of all, scientists can sometimes be wrong, especially when they attempt to explore the messiness of the human mind. Just think of all the theories psychologists have at one point promoted. Psychologists once told us that a person’s head-shape could give us information about a person’s character. And homosexuality wasn’t removed from the DSM [Diagnostic and Statistical Manual of Mental Disorders] until 1973. Because science is sometimes wrong, we can’t simply “follow the science”---we need to be able to think critically about the science.

And there’s a second reason that we can’t simply “follow the science” when it comes to deep disagreements about autism research. Science can’t tell us what we should care about, what we should study, and which values should drive our pursuit of knowledge.

Chloe: But I feel like, yeah, a lot of researchers, particularly when we're talking about psychology, we're dealing with human beings, will try and maintain that they're being objective and it's science for science’s sake and things like this and I think that's a really dangerous narrative.

It's, I mean, in psychology, it's everywhere. It just, again, it depends on your values and your assumptions and I think the issue is, I'm much more honest about my values and assumptions, I think, I can always try harder, but I always try to be honest about my bias because I have them, I do. My perspective, the questions I ask in research, all those sorts of things, they are definitely coloured by my perception of the world, my experience of the world. But I think the difference may be for me and a few others is that we don't lie or we don't pretend that we can be objective. And I think I'd prefer, I’d have more respect, I guess, for a number of researchers if they were just very honest about what drives them and not pretending that they're being objective because they're not. We're humans. You can't be objective with other humans or about other humans.

We Need Some Philosophy

Amelia: So what do you call it, when you start asking questions about the values that lie at the foundations of science?

Philosophy is the practice of clarifying and attempting to answer these types of fundamental questions. So, if we're going to understand the world of autism research and advocacy today, we need to do some philosophy. Maybe we can all be productive irritants together.

Introducing the “Theory of Mind Deficit” View of Autism

Amelia: To kick off NeuroDiving, we’re serving up a whole slew of episodes about the concept of theory of mind, as well as the related concept of empathy.

For decades, researchers and clinicians have promoted the idea that autism is a deficit in theory of mind. In other words, they promoted the idea that autism, at bottom, is an inability to understand minds—both the minds of others, and even one’s own mind. But this idea doesn’t reflect what many Autistic people report about their experiences, and many researchers now reject this understanding of autism. But even though the theory of mind deficit view of autism has been roundly criticized, it just won’t go away.

The "theory of mind deficit" view of autism offers us a case study in how our values inevitably shape our science, and it illustrates what happens when we don’t carefully reflect on those values.

On this season of NeuroDiving, we're going to dive into the theory of mind deficit view of autism: what it is; where it came from; why it has stuck around for so long in spite of all its problems; and how we can do better, now that we know better.

Chloe’s Autopia

Chloe: In my ideal world, in my Autopia...

So I want to see more novice, you know, Autistic community members and Autistic community members with a learning disability label actually becoming part and central to that research, teaching them the skills to actually be researchers.

Definitely want to see more research for intersectional and marginalised groups. So we need far more research around what it means to be Autistic and Black or an Autistic person of colour because we know that, well certainly in the UK, I imagine it's the same in the States, that they're less likely to be recognised as Autistic. They're more likely, because of systemic racism, to be considered to have behavioural problems compared to their white counterparts and things like this. So what does it mean? What does it look like to be Autistic with the different pressures that they have as a marginalised number of, a group of people?

We're starting to see more queer Autistic research done by Autistic people, but we definitely need more of that as well given that a large percentage of Autistic community members don't identify as, say, cis or heterosexual, like more needs to be done around that. But not around the why. Like, why does it matter? Why we’re more likely to be queer? What we need is, well, how do we adjust healthcare, gender affirming healthcare, or just not gendering healthcare necessarily for Autistic people in general or thinking of the sensory issues when you have to go and have quite, feels like quite personal and quite invasive, you know, check-ups and procedures, all these kinds of things, like that research and what can we do to actually support those people.

And definitely non-and minimally speaking, Autistic research needs to be done with and by those group, those members.

But basically, yeah, all the intersectionality really, because it's fascinating and it's interesting and it can be exciting and it can mean that we can make more tailored, more, and better change than, “oh look, there's autism in your DNA.” Okay, now what? But yeah, so I think that makes it much more exciting, the idea that we could get all that nuance if the funding were given to Autistic researchers.

Credits

Amelia: This episode of NeuroDiving was written, produced, and hosted by me, and Joanna Lawson provided invaluable editorial advice. Many thanks to Dr. Chloe Farahar for talking to me about the current state of autism research, and how autism research is beginning to change. To learn more about Dr. Chloe’s work, I strongly recommend taking a look at her educational platform, called Aucademy—you can find a link to it in our show notes. And thanks to the Marc Sanders Foundation and the Templeton Foundation for their support of the show.