Zoe: [00:00:00] Welcome to the Autism and Theology Podcast, brought to you by the Center for Autism and Theology at the University of Aberdeen.

Hello, and welcome to this episode of the Autism and Theology Podcast. I'm Zoe, and it's great that you've joined us this week. This podcast is a space where we engage with the latest conversations in the field of autism and theology, share relevant resources, and promote ways that help faith and non-faith communities enable autistic people to flourish.

This podcast is run from the University of Aberdeen Center for Autism and Theology, which [00:01:00] we shorten to cat. We're currently releasing a series of episodes on the topic of autism and mental health, and today I'm joined by the Center's co-director, Grant Macaskill, to speak about autism diagnosis and mental health.

I'm sure a lot of our listeners already know who you are, Grant from previous episodes and other engagement with the center. But for those of you who don't know who you are, can you share a little bit about yourself? 

Grant: Sure. So, uh, as you mentioned already, I'm the co-director of the Center for Autism and Theology.

Um, I'm also the Kirby Line Chair of New Testament at the University of Aberdeen, although I'm moving at the end of the summer to take up a position at Durham University. Uh, and we're hopeful that once I make that move, I'll still be able to be involved in the leadership of the Center for Autism and Theology.

One of the principles that has been very important to us is that the center is led by actually autistic people. [00:02:00] So I was diagnosed a few years ago, and that's one of the things that we might talk about a little bit further today. Uh, I was diagnosed as autistic, late diagnosed, I should say, uh, because I am now 51 years old.

So I was diagnosed really quite, quite far on in life. 

Zoe: Yeah, thanks for sharing that Grant. And obviously we're gutted to be losing you Aberdeen, but really looking forward to seeing how connections with Durham, um, impacts the center and the exciting things that will come out of that. So Grant, we wanted to do this episode because there's so much conversation around.

Funding cuts to support for autistic people and also conversations around waiting time for diagnosis and also things about over-diagnosis and people having concerns about that. And all of these conversations can understandably have an impact on mental health of autistic people and how they're understood by communities, um, and attitudes towards autistic people and their families.

So could you share a little bit more about the background of this episode [00:03:00] and Yeah. More about why we felt it was important. 

Grant: Yeah, well what you've, what you've just said there I think gives a very good overview. Um, we're in a situation at the moment where some of the local. Autism assessment programs are effectively closing their doors to new referrals.

Um, and if they're not closing their doors to new referrals, then they have extraordinarily long waiting times. Um, and that can create a number of problems on a number of fronts. Uh, one is simply that people who may be dealing with. Uh, stress and anxiety that's related to. Um, their experience of being autistic in a world that's not particularly accommodating of autistic people that stress and anxiety can be building up.

Um, and until they get a formal diagnosis, in many case, [00:04:00] in many cases . The opportunities for accommodation and support may be limited, but also their personal anxiety can be growing in the meantime. Now, related to that is something that I've also just hinted at, which is that many of the accommodations and supports that might be given to autistic people or to the families of autistic people are often conditioned or conditional, rather, on a formal diagnosis, which is an enormous.

Problem. And I think one of the things that many autistic people would say and would recognize is that, uh, for many people, self-diagnosis is the only option that's available to them for funding reasons or indeed because of this landscape where it's becoming, uh, increasingly difficult to get an autism diagnosis within a timely period.

Uh, so we would recognize the, the value and the validity of self-diagnosis and many of the people. Uh, in fact, I would probably say most of the people who [00:05:00] do diagnose themselves do so on the basis, actually have a very informed understanding of autism and of other conditions of neurodivergence. Um, but it remains the case that for external organizations, employers.

Uh, educational authorities and so on. Formal diagnosis is often required to access those kinds of supports. So there's a lot of anxiety. I think, growing about the fact that you might not be able to get a diagnosis when you need it. You might need to wait a long time. You might not even be able to be referred for diagnosis, and that's a really troubling context.

Now, the other thing that's worth saying, and we'll maybe come back to this, is. That there is, uh, a growing discourse around the possibility of over-diagnosis. Um, we might even say that there's a rhetoric around, over-diagnosis, and that's been associated with [00:06:00] some recent publications, not. I would stress research publications or peer reviewed publications, but popular publications that have used the language of over-diagnosis, and that's been widely filtering into public discourse.

And there may be a validity to some of those conversations, but the great concern is that they feed into a narrative that. Supports, uh, or justifies the reduction of opportunities for diagnosis or the defunding of, uh, diagnostic processes in organizations. So there's another element that contextualizes this, and of course the big thing that we are sensitive to with the Center for Autism and Theology is that many of the people who are involved with the center.

In some fashion or other, um, themselves have had the experience of [00:07:00] either waiting for a long time on diagnosis or, um, still waiting for a diagnosis or being diagnosed late in life. And that gives us, I think, an interesting set of insights into what it's like to, to have to go through that process of waiting for a long time to be diagnosed.

Zoe: Yeah, and just while you're speaking, um, so many questions and things that pop up on, but just thing that has come into my head a few times while you're speaking is sort of intersectionality and obviously to receive a formal diagnosis, often you need significant funds to do that. Um, if you're not in education, if you're, um, trying to get a diagnosis later in life.

Um, but then if you don't do that, you then can't access funding to get support. And I was just wondering if Yeah, you could share a little bit more about that side of things as well. 

Grant: Yeah. It, it can become a [00:08:00] really, um, vicious cycle. I mean, I'm, I'm grateful that many organizations. Including universities are, are increase increasingly recognizing that people may need to self-diagnose in order to have, um, uh, or in order to claim the kinds of accommodations that can be provided.

So we are seeing some universities acknowledge that a formal diagnosis is, is not an absolute requirement to have some kind of accommodation put in place. Um, and it's worth saying here that some of the kinds of accommodations that might be put in place relate to sensory environments to the environments in which you might take your exams.

Um, those are the kinds of things that universities can do that that can really help, uh, students going through stressful times to, to manage their stress. [00:09:00] But, um. Yeah. You know, beyond that, the, the bigger issue is that for many people there just becomes a vicious cycle where they don't have the opportunity to get diagnosed.

At least in the uk we have a, a national health service that has historically funded autism assessment. At the moment, this is the big challenge we're facing, is that these pathways to assessment are being closed down, uh, or close to new referrals. But internationally we often, uh, speak with colleagues around the world, people who are involved with the Center for Autism and Theology, who are faced with.

The, the requirement to pay significant amounts of money to get diagnosed, uh, thousands of dollars in, in many cases. Uh, you used the language intersectional, uh, earlier on, and, and the point here is that some of these cycles become disproportionately significant for people who are in particular income de [00:10:00] demographics or particular communities who are more thoroughly excluded from the possibility of diagnosis.

There's also then a related intersectional question, which is that if you, if you don't necessarily belong to a community that already has good representation of autistic people, then you can be dealing with the fact that you are different and perceive yourself to be different, but without anything to allow you to measure that difference or to identify with that difference in a way that doesn't just seem, um.

Marginal or peripheral or excluded. So if, if you come from a community that doesn't have good autism representation, uh, then you will feel your sense of being different in a way that is potentially much more difficult for you to deal with. [00:11:00] 

Zoe: Yeah. And that's such an interesting point. 'cause then you've got all these further barriers to diagnosis.

You've not got people necessarily supporting that or encouraging that or even raising awareness that you might be autistic, I suppose. 

Grant: Yeah. Yeah. This is, and if, if I can say one other thing that's, that's maybe right in our, um, in our awareness with the Center for Autism and Theology, there are generational aspects to this and.

If you are, if you're of my generation, you grew up with particular representations of autism in the media, that perhaps gave you a skewed understanding of what autism is. But also, I think, uh, a skewed understanding of the potential to see it in positive versus negative terms. And what we're seeing quite widely with the center is, is the.

We have many people who have been involved in the church and even particularly [00:12:00] involved in pastoral ministry, where that vocation hasn't actually given them the opportunity to see, uh, more positive normalization of autism, if you like. So autism is treated as if it is a bad thing. And that's, that's the context in which they may have lived much of their life and, and even the context in which they may have ministered for years in, in some, uh, in some capacity.

And, uh, to, to process an autism diagnosis late in life for them is often an opportunity to look back on their, their life and on their career and realize that many of the things that at the time they were made to feel terrible about actually simply represent and reflect their autistic differences.

Um, and the problem has simply been that, that those differences have been manifested in the context of a community that has not [00:13:00] really attempted to understand them, uh, and not really attempted to approach them as, as intrinsically good things rather than intrinsically bad things.

Zoe: Yeah, and I'm just thinking about, um, you mentioned representations in the media, maybe like, um, for older generations where what an autistic person was portrayed as in the media is very different to what we now understand, um, what autism means for different people. Um, and then I'm just thinking as well about, you talked about.

Um, over-diagnosis. And that's also a huge thing in the media at the moment. You see so many articles about over-diagnosis and, um, how a lot of people are feeling that it's problematic and again, it's like we're seeing representations in the media that drive a narrative. And then you mentioned the impact of.

Conversations on over-diagnosis with defunding. Um, and then that kind of gets us into like the vicious cycle of, um, people struggling [00:14:00] and yeah, just, I don't know if that kind of collection of thoughts made sense, but I'm just wondering if kind of going back to that over-diagnosis and the trends that we're seeing in the media of how Autism's presented, just would be interested to hear your thoughts on that.

Grant: Yeah, I'm, I'm glad you've, you've raised this, um. We've seen the, we've seen the rhetoric of overdiagnosis quite widely in the last few months, um, including from the UK Health Secretary. So, um, it, it's been quite widely used. Um, one of the factors in that was the publication of, uh, book. Um, a few months ago by Susan O'Sullivan called the Age of Diagnosis, which explores this idea of overdiagnosis. Um, now that book is not a peer reviewed publication. It's a popular work, although it is a work [00:15:00] published by someone with a, um, with a background in medicine who does have a background as a researcher in medicine. The work itself is not peer reviewed, which is an important point because, uh, works of that kind that are aimed at the general public that haven't been through a process of peer review can sometimes, uh, reflect.

Particular aspects of research and under represent other aspects of research because they're not passing under a peer reviewer's eye who might ask for, for other elements to be incorporated into them. Um, and I want to be careful in what I say. Uh, about the book because I, I don't want to really comment on the book itself.

What I want to comment on a bit more is the rhetoric that surrounded the reception of the book, but also some of the ways in which it connects to our own work in the Center for Autism and [00:16:00] Theology, and also streams of research into autism. Um, and actually also into other conditions that are sometimes.

Alleged to be overdiagnosed, uh, including, for example, long COVID, which is one of the conditions that the book speaks of and categorizes in a particular way. So one of the key things that has been said about the book is that the, the context in which O'Sullivan is speaking. Um, is one in which we've seen the rates of diagnosis of conditions of Neurodivergence autism.

A DHD in particular rise massively over the last couple of decades. Uh, now that's something that, that. Has been widely discussed [00:17:00] and the reasons for it are widely discussed in relation to awareness, but also in relation to the, the shifting understanding of what the, um, what the symptoms and characteristics of these conditions are.

What strikes me in particular with some of the discussion is that, uh, when people talk about overdiagnosis, they, they will often speak of the diagnosis as creating a problematic situation for the person involved. So where too many people are. Uh, being given a label and that it would be better for these people not to have a label attached to their difference.

Um, people [00:18:00] may be given medications for their conditions. Um, and also interestingly, and this is one of the things that I'll talk about, that once people have this label, that it can sometimes. Uh, be followed by their moving out of the workforce. So, uh, people who are diagnosed particularly late in life follow up several years later, and you find that, that they're no longer working.

They've had to retire early, uh, and and so on. Now, what strikes me reading that kind of discourse is that, that first of all, the negativity towards labeling. Represents, I think a, a, a, the residual sense that the condition being labeled is intrinsically bad and that the label is therefore an intrinsically bad thing that doesn't really leave space for the [00:19:00] possibility that, um, to be autistic or to be neurodivergent in some other way may constitute, uh.

A good difference, but one that nevertheless needs to be. Accommodated and one that may be accompanied by some distinctive challenges. So we know statistically, uh, statistics can be misleading, but, um, it's still useful, I think, statistically, to recognize that people with autism, people with A DHD, these conditions can often have a higher statistical coincidence with, um.

Mental health conditions such as anxiety and depression, and there's conversation that can take place around what the relationship is. That's certainly the case that a large part of that relationship. Relates to being autistic or [00:20:00] having ADHD or having other neurodivergent conditions in a world that doesn't particularly accommodate these differences.

So I mean, I'll talk actually in a moment about my own diagnosis, which maybe helps to illustrate some of this. Um. Simply recognizing that the condition itself is not an intrinsically bad thing, so the label is not an intrinsically bad thing, so we shouldn't be anxious about someone getting a label of autistic or something else.

And the accommodations then are, are not about, um, accommodating something intrinsically negative. They're about accommodating something intrinsically different so that it doesn't have to be negative. And that's a very different way of thinking about both the label and the accommodation because if the label is effectively saying, I have sensory differences, please take that into account when you're around me.

Um, then that [00:21:00] potentially is something that can help you to thrive rather than simply, um, label the fact that you're not thriving in some way. So I think that that's, that's the first thing. And then the second thing that connects to this is, um, the, the fact that, um, for some people. There, it simply may not be possible to continue and work.

Um, and actually in some cases, this is one of the interesting things. In some cases, the reason for that is actually because they've almost been diagnosed too late. So there's been a pile up of emotional or contextual, uh, problems in their lives. Um, which has effectively caused them to, to burnout. You know, there, there, there's a concept of autistic burnout, which is.

Broadly the same as, as, uh, [00:22:00] neurotypical burnout, but is particularly associated with some of the distinctive qualities, uh, that often go with autism. So sensory overload and cumulative sensory overload, um, anxieties associated with, um, communicative differences or social differences. Um, all of these things pile up.

And that kind of pile up of anxiety and stress can lead to a point where even once you've been diagnosed and even once you have accommodations in place, it's just very difficult to recover because your system has been so traumatized. Uh, I mean this, as I mentioned, you know, this is probably a good place for me to just speak about my own experience of diagnosis because really what prompted that was actually precisely.

The sense that, that I was increasingly struggling to deal with the, the buildup of, um, sensory overload, [00:23:00] stress, and socially related stress that was linked to my working environment and also actually linked to the commuting environment to, to get to work. So I had always had these kinds of experience where certain sensory environments, I mean, for me, the sensory issues are particularly.

Sound and smell. So certain kinds of sounds. Um, it's, it's not that I hear them more loudly than other people, but they are, are physically distressing to me. So the, the way that the. The person who diagnosed me put it is that basically what they're doing is they're pushing a danger button in my brain all the time.

And they're not necessarily loud noises. I mean the sound of someone eating crisps, um, because it's inconsistent. It's, it's always pushing that button. And similarly, certain smells, and it's particularly smells associated with, um, grooming products. So whether it's hand wash or deodorants, or. [00:24:00] The stuff that people put in their hair, um, these smells will, um, will, will trigger me.

Uh, and it's not simply that they smell strong. Uh, I mean, the way that. The only way I can, I can only ever put this is that they smell like a screwdriver being stuck in my head. Um, you know, it, it's, it's really painful and all of that builds up. So part of the context for pursuing a diagnosis was that I was feeling more and more stressed.

I. By having to interact in a world that, that had this, taking the train to get to work and being surrounded by people. And before the pandemic, people didn't really appreciate it when you wrapped your head in a scarf or put on a mask, um, and, you know, had had things in your ears to try and block out the noise.

So all of that was really building up for me. Um, and also some of the communicative differences that I would now fundamentally regard as a strength. [00:25:00] Um, were creating issues in terms of the fact that I was being too direct with certain people and they were finding that quite difficult. Um, so the diagnosis for me was, I felt a really important intervention and it was a, it was a more.

Stressful process itself. And I actually expected it to be. And I also sat in a waiting list for three years. Interestingly, while all of this stress continued to build up, um, but I'm not sure what would've happened if I hadn't been diagnosed at that point because it, it felt like it allowed me to put some accommodations of my own in place, um, and be prepared to say to people, uh, I'm not gonna go into that environment because it will stress me.

This is the reason it will stress me, or, you know, I'm, here's an example. I'm gonna use the disabled changing rooms at the gym because I will be the only person in that room, so I'm not gonna be surrounded by [00:26:00] people spraying, spraying deodorants in my face and, and overwhelming me with that kinda noise.

And I'm not gonna be surrounded by the noise of people talking in, in loud, aggressive tones all the time. So that's an example of, you know, a, a adopting an accommodation of my own. But I was also able to speak to the university to ask for accommodations of certain aspects of the job that were causing me distress.

Um, not because they were bad, but because they, they didn't suit me. Now, I don't think anyone would look at me and say that I have failed to do my job well. Um, you know, and I don't think anyone would look at me. The accommodations that I asked for and see that as someone who is work shy, um, looking for these accommodations in order to get out of doing certain things, um, these reflected a, a very deep sense on my part.

The, the uni, the university [00:27:00] was asking me to do things for entirely good reasons that I couldn't do. But others could. So, you know, this was about managing a situation, but when I look back at it, I think, you know, if, if I hadn't had that diagnosis, then um, I'm not sure where I would be mentally now, because things really were building up.

I mean, interestingly, in, in the interim, the pandemic happened. I was actually diagnosed at the beginning of the pandemic. Um, and lockdown for me was actually a relief. Um, the pandemic wasn't a relief, but lockdown was a relief because for the first time in years, I was able to just inhabit my own sensory space and managed social interactions through screens.

Um, and the whole thing was just so much more manageable. Um, but the diagnosis was a really important part of that, and I think it, it really helped [00:28:00] with my ability to perform my professional tasks. So, you know, that I think contextualizes many of our conversations about the, the shutting down of these pathways because.

When I hear of pathways being shut down, I imagine people who are in the same sort of position I was in and recognize the kind of distress that that can cause them, or in a very different way. People who are parents of autistic children, um, facing the distress of not really knowing themselves how to deal with this situation, wanting input, wanting support, wanting their kids to get support at school, um, and not feeling like those pathways are.

Open to them. So this is, you know, my concern about the Overdiagnosis rhetoric is, is precisely about issues like that. And my concern about Susan O'Sullivan book, and [00:29:00] not so much the book, but the reception of it, is that people are hearing, uh, an eminent, uh, medic raise this kind of concern and it resonates with something with them because they're seeing the statistics, uh, rise all the time, and they feel that there must be something to explain that.

And also, you know, there is a, a genuine question to, to talk about whether certain medications are being overprescribed. Um, and I don't want to comment on, on that at all because that's way outside my own area. But there are genuine questions to be explored there. But the concern is that potentially you have.

One sided accounts of autism that are very reliant on a particular medical model of autism and they don't necessarily understand the other models of autism. Uh, you also potentially have research that is by the [00:30:00] nature of what a popular level book does, landing on one particular study that might indicate one thing.

And not necessarily engaging with the other studies that indicate something different. And of course, as we know with the Center for Autism and Theology, there's a whole area of research into autism and other neurodivergent conditions that is recognizing the distortive effects of particular models on the way that the conditions are evaluated, understood, and represented.

Zoe: Yeah, it's absolutely fascinating and thank you for sharing about your own experience. I'm sure that'll resonate with a lot of listeners as well. Um. I find it fascinating what you're talking about with the labels. It's almost like the ability to name what's going on, whereas a lot of the time in the media it's about like, oh, it gives you an excuse, or, but just that reframing of like, no, like being labeled as.

autistic [00:31:00] means that you can say, this is what I'm experiencing and this is why, and this is accommodations that will change that for me. And obviously what's, what you've shared is so fascinating and really interesting for a lot of people. But thinking specifically in the context of theology as the Ottoman Theology Podcast, what can we say theologically about all of this and how might the church respond?

Grant: So I think there's probably two or three things that are worth saying. The the first is a point that. I always, or often at least come back to, which is that, um, if you read fairly through the New Testament and the representation of the churches who are usually on the receiving end of the epistles in the New Testament, you won't necessarily presume that the church is gonna be a [00:32:00] safe space.

So you, you are ready for the fact that the church will be full of all of the same kind of prejudices and all of the same kind of ignorances that are out there in the world. So the, the church is the place where, uh, redemption is working itself out. It's not the place where redemption has been fully worked out.

Um, and I think that's a really important point because. The experience of many autistic people with churches is that churches add to their personal struggles rather than helping their personal struggles. Now, many of us, I think, would attest to something a little bit more complicated where the church adds to our personal struggles, but is also a place that, uh, brings us a lot of blessing and a lot of happiness and a lot of friendship.

I think [00:33:00] it's important to, to make that observation, uh, so that we don't approach churches with a kind of naivety and also so that we don't, if you like, represent or sell our churches with a kinda naivety, you know, it's, it's very easy to talk about the churches and inclusive space. Um, but actually churches aren't necessarily inclusive spaces.

They're often very exclusionary spaces. So I think that's the first thing, and not for that to become a, a message of despair, but for it to become a, a message of diagnosis if we can use that language, uh, a message of diagnosis of the fact that the church is not healthy, um, and as the church aspires to be a place of God's love and a place of belonging for those who belong to God.

Uh, to, to recognize that many, many of the [00:34:00] problems of the world are present in the church. They just have a, a different veneer on them. So I think, I think that's the first point. That also then leads into the second point, which is that if we're gonna be attentive to the ways in which our churches fall short of true ministries of belonging and inclusion, then I.

We need to think seriously about these issues and we need to recognize that um, many of the people who are in our churches, uh, will be experiencing these kinds of struggles. So we'll have many people in our churches who are dealing with distinctive kinds of anxiety that are not necessarily anxieties about the future.

Um, and are not necessarily anxieties about, uh, problems [00:35:00] in the world in general, but are anxieties that emerge from the fact that they're in a world that is full of the wrong sensory triggers, or in a world that doesn't accommodate their sensory needs. Uh, they're full of anxiety because they've had a week where they've been interacting with people whose modes of social interaction are uncomfortable for them to be part of.

So the point is, you've got people who are anxious and actually made doubly anxious because of the rhetoric of overdiagnosis. Because in instead of feeling these anxieties and these differences and having people say it's okay to be different. Uh, you feel these anxieties and these differences, and then there's a rhetoric of, uh, you, you just want to be treated as someone special, so you're, you're doubly problematic.

Um, and I think that's a, [00:36:00] that's a pressure that churches will then experience and in the reality of people within their communities whose. Levels of stress and anxiety are, are often rising massively because of that. And, you know, on that level, one of the things that churches will be dealing with are, are people who are undiagnosed.

Um, and there's a danger of approaching people who are undiagnosed and seeing yourself as the person responsible for making a diagnosis. And that, that I think is a real danger that we've, we've seen quite often. And particularly because that diagnosis is often couched in very negative terms. Uh, so just to put this in very personal terms, you know the, the number of times I've heard people dismissing someone with the expression, while they're clearly on the spectrum, as if by by saying they're on the spectrum, you, you just, you categorize them [00:37:00] as someone whose opinion that you don't need to worry about.

Someone whose actions should just be treated as, as completely inexplicable. Um, that's a kind of, that's a kind of popular diagnosis that is completely unhelpful and completely wrong. Um, so, you know, we need to be sensitive to the fact that for churches are, are full of people who have, uh, or at least contain people who have.

These kinds of experience of being not diagnosed, being undiagnosed, and consequently dealing with, with many of the anxieties and struggles that will go with that. The answer is not to pass your own uninformed diagnosis on them. The answer is to be sensitive to the distinct species of struggle that they may be going through, and you know the answer.

The guide to this [00:38:00] that I think we always need to repeat is this point that every person is different. Every person with autism or another neurodivergence is different. Consequently, the anxieties will look quite different in one person to another. So the answer is always the, uh, a caring, loving, and genuinely inclusive.

Approach to someone like that is to actually just talk to them, um, and talk to them without judgment in a way that understands where they're coming from. And it recognizes that sometimes anxiety can make us respond to situations in unhelpful and potentially unhealthy ways that, you know, this takes us back to the fact that the undiagnosis and underdiagnosis of, um, conditions of, uh.

Neurodivergence. It can effectively create a very [00:39:00] unhealthy environment and can effectively create very unhealthy people. This is the irony of this discourse about Overdiagnosis, is that it's actually leading to a world where there are more unhealthy people who are reacting in unhealthy ways to situations because they're not.

Extended appropriate accommodation and support. Um, and from a pastoral point of view, treating people who are in that place with sympathy and care so that if, if they've, if, if they're acting in unhealthy ways instead of judging them, we act with, with care and love. That's helpful and that's supportive.

Zoe: Yeah, absolutely. This is all fascinating and something that I feel we've kind of touched on a little bit, but not really addressed at [00:40:00] all, is the idea of imposter syndrome. And just as you were speaking, that came into my mind and you know, you mentioned the way we sort of like I. Diagnose people ourselves or whatever, and make assumptions about people or, um, language of over-diagnosis can then lead people to question, oh, am I actually neurodivergent or am I just the result of, because I seem to fit in fine in church, I don't fit that stereotype.

And I think that's also a huge issue that we need to tackle in churches and how we value people, how we make people feel when it comes to imposter syndrome. 

Grant: Yeah, it it absolutely is. I mean, there's, if you take. If you take that language of impostor syndrome, um, that has a counterpart if you like, which is gaslighting.

And that's really interesting because, so one of the things that many autistic people will feel, and one of the things that can be what's certainly one of the things that I found very helpful about a diagnosis [00:41:00] is that people can say to you in a. What they consider to be a very supportive and affirming way.

You don't look autistic. I wouldn't have thought you were autistic. I wouldn't have categorized you as autistic. And that from their point of view, that can be a supportive thing to say. The problem is that it can be a species of gaslighting it, it can effectively be, be a way of saying, oh, you're not really autistic, or at least.

You're not autistic in the bad way. You know, whi, which is also connected to this idea that people have a particular mental image that is intrinsically or essentially bad. But that kind of phenomenon of gaslighting can be a real problem, and it can particularly then tie to individuals who are especially vulnerable to a form of imposter syndrome where you do wonder whether you.

Are actually this, and whether your [00:42:00] use of this as an identification is legitimate or not. Um, I mentioned earlier that the over-diagnosis discourses is also associated with Long COVID long COVID for, for some has been represented, misrepresented, I would have to say, as simply a psychosomatic condition, similarly to the history of the way that me CFS, and fibromyalgia have been treated simply as psychosomatic, as, as, uh, physically presenting conditions that have their roots in the, in a state of mind.

Um, now the problem with that is that we have lots and lots and lots and lots of evidence for organic causes to these conditions. [00:43:00] Um, muscle damage, cardiovascular damage, neurological damage. And I use the word damage because these, uh, these effects can be. Detected with the right kinds of testing, physical testing.

Um, the problem is that these tests are not widely available in hospitals. So they're, they're research evaluations that are undertaken. But we've had a long, uh, history of, of a gaslighting approach to, uh, me, CFS, and also to fibromyalgia that has now transferred over to long COVID. And it's equivalent to, um, it's equivalent to what we find going on with autism, uh, and with other neurodivergent conditions where there is a kind of gaslighting, which is particularly difficult for those who, [00:44:00] um, are able to appear.

As if the condition doesn't, uh, create massive differences between them and everyone else. And you know, I think the point there, I use the language of a peer because this is very closely connected to masking. So many of the people who are gaslit are people who have learned to perform a particular identity.

Um, and that particular identity is a kind of mask that allows them to meet the expectations of the normal people. But those same people, uh, those people who are very good at masking or at camouflaging are also the people who will often feel the greatest toll. By being different in a world that doesn't [00:45:00] accommodate their differences.

So the masking becomes actually part of the problem, and masking becomes one of the things that is almost generative of our, of our anxieties, of our stress, and of our mental health problems because we're, we're able to get by enough that we are in situations that completely exhaust us. We're in environments that completely exhaust us without accommodations.

So that phenomenon of masking as well. This is maybe an interesting point to pick up another time because that phenomenon of masking seems to have often affect women more than men. I. Um, I don't want to be, I don't want to over generalize that, but one of the reasons that there has been such a historical underestimation of the number of women with, um, with autism is because they've often been able to cover it in, in ways that [00:46:00] mean they're more subject to gas lighting.

And that's been through with these other conditions that I've mentioned as well. Women are particularly subject to. A particularly male form of gas lighting. Um, and that, that's very troubling and it's, it's almost baked into certain cultures as well, which I think is a very significant point to observe that, um, it's almost in many, in many contexts, institutionalized.

Uh, and that's something that needs to be addressed.

Zoe: Yeah. And I think again, that's so interesting when we're thinking about churches and how as how churches can be welcoming and understanding of people who are different. It is like, it kinda reminds me of what you said earlier about lockdown allowing you to inhabit your own sensory space and it's different, but I suppose that's kind of.[00:47:00] 

Where churches can start to think of how they can be spaces where people can unmask. We spoke about that a couple of episodes ago where church can be spaces where people are able to be themselves and um, are willing to put things in place that make that easier for people. Um, is a really interesting question and something that yeah, we address again and again on the podcast.

But yeah. 

Grant: Yeah, I mean one of the interesting points that, that this raises as well, which. I thought about a couple of years ago in a lecture that I gave on long COVID, but I think it also relates to other forms of neurodivergent experience is that, um, our underlying ecclesiology, our underlying theology of what the church is as the body of Christ.

Um. Needs to be explored in a very serious way because we, we need to develop a theology that has an appropriately, [00:48:00] uh, distributed or a centered account of the body of Christ. Obviously there is ace a center, um, which is Christ himself, but there's another sense in which the, the body is. Um, instantiated wherever the members of the body are.

But churches and pastors will often have a way of thinking about the church that is essentially centered on their, their particular space and what happens within their particular performative space. You know, IE the service within the church building or wherever the church meets. And there is a tendency to, to identify the church in those terms where we need to recognize the reality of the church [00:49:00] as something that is wherever those who are united to Christ our, and that invites, uh, an a centered way of thinking about the church.

And that's important because for, for many autistic people, for many people with long COVID, and also of course for many old people, um, and for many others physically attending a particular performative space is simply not gonna be possible. So thinking about ways in which we can realize and maintain, uh, the body of Christ throughout the world as the the locus.

The Loki for God's presence is I think, a really important thing for us to, to get our heads around.

Zoe: Yeah, absolutely. And I. That's a really good place to kind of close and allow people to reflect on what that means and what that means individually for autistic people and [00:50:00] non-autistic people for church leaders.

And yeah, I think that's a really good place to, um, close our discussion. Thank you so much, Grant, for coming on and sharing, on this topic and being part of the mental health series. Grant mentioned the long COVID webinar.

I will link the YouTube video to that in the show notes. As always with this series, we'll have resources in the show notes that you can go to if you need a bit of support, if you're autistic and struggling with mental health in any way.

But yeah, thank you so much, Grant, for joining us and thank you to everyone who's listened to this episode. If you have any questions or just wanna say hi, you can message us @AutismTheology on Social Media or send us an email at cat@abdn.ac.uk

[00:51:00] Thank you for listening to the Autism and Theology Podcast. If you have any questions for us or just want to say hi, please email us at cat@abdn.ac.uk or find us on Twitter at Autism Theology.