Speaking with Us, Not for Us: Neurodiversity, Theology and Justice

Abstract

To belong in the Christian tradition, we must be able to contribute to it. Yet neurodivergent Christians have rarely been enabled to tell our own stories about ourselves as a vital part of God’s (neuro)diverse creation. In common with other autism research, academic theology is framed by pathologizing clinical paradigms of autism; neurodivergent people’s situated knowledge about ourselves has not always been valued in the field. In this aut-ethnography, I use reflections from a decade of engaging with autism theology – often a painful experience of Othering – to frame a response informed by critical autism and neurodiversity studies. Drawing on lived theology from autistic research participants, I consider what our neurodiversity theologies have to offer to academic theology. Finally, I ask how theologians can do justly by speaking with, not for, neurodivergent people.

Keywords:

• Autism theology
• autoethnography
• critical autism studies
• disability theology
• epistemic injustice
• neurodiversity

Acknowledgements

The author would like to thank Krysia Waldock and Fiona MacMillan for advice on an early version of the manuscript.

Ethics statement

The primary data cited in this article comes from a PhD study which received ethical approval from the Department of Sociology, University of Sheffield and the Department of the Study of Religions, SOAS, University of London.

Notes

1 Jemma Brown (Richardson et al., 2022).

2 Adapted from my blog post Safety In Numbers: Autism, Theology and Me (Jacobs, 2022).

3 Neuronormativity is “the performance of the local dominant culture’s current prevailing images of how a so-called ‘normal’ person with a so-called ‘normal’ mind thinks and looks and behaves” (Walker, 2021, p. 53).

4 The neurodiversity movement grew out of the autism self-advocacy movement, but the concept of neurodivergence is used today by people with ADHD, by dyslexic, dyspraxic and dyscalculic people, by those with Tourette’s Syndrome, and increasingly by people with learning disabilities and/or mental and emotional distress (Graby, 2015). Responding to critiques that the neurodiversity paradigm is only relevant to those with low support needs, neurodivergent people have argued that this lacks a nuanced understanding of the neurodiversity movement’s values (Campbell, 2020; Milton, 2019).

5 Writing about teaching disability studies as a disabled person, Campbell argues that disabled experience creates a different perspective in and on the world, but not through any epistemic privilege offered by a fictional “purity” of experience. She focuses instead on the process of subjectivity: “a complex matrix of resources of language, experience and culture… forever in process” (p. 122). Disabled scholars are constructed as subjects, shaped by the material we are teaching or studying about ourselves, as disabled people – an embodied position that sometimes comes with what Campbell calls “seductive power” (p. 122), but which is disempowering in other ways, including in the vulnerability of our positionality, particularly if we are or have made ourselves visible as disabled scholars. The disabled teaching body involves a “performance of disability” (p. 125) as we teach (or, I would add, research) in critical disability studies and related fields. This process of subjectivity is what makes disabled scholars more than just the “objects” of disability research (Campbell, 2009), and why our study and research in disability theology can have a personal impact on us, as this article discusses.

6 Miranda Fricker (2007) writes about two types of epistemic injustice – testimonial injustice, in which the stories told by members of a marginalised group are not believed, and hermeneutical injustice, in which we are not enabled to participate in the shaping of knowledge about us.

7 Williams writes here about her exclusion from charismatic ritual, as an autistic person, but her reflections on being unable to remake herself through narrative after trauma resonate with themes of speech and knowing.

8 Lucy and Anthony are 2 of 14 neurodivergent participants in research for my PhD and a book (Jacobs & Richardson, 2022), from a total of 45 disabled Christians in the United Kingdom. Both were initially diagnosed with Asperger Syndrome, a diagnosis which no longer exists. Their shifting terminology for themselves reflects similar shifts in the autistic community at the time they were interviewed, in 2015.

9 Diagnostic criteria might imagine some of Lucy and Anthony’s interview contributions as a “failure of normal back-and-forth communication” (Centers for Disease Control and Prevention, 2022), but their speech is different from neuronormative standards, not deficient. Longer interviews, more time spent with the data, and participant reflection (Tracy, 2010) helped us to bridge communication gaps together.

10 Rosemarie Garland-Thomson’s theory of misfitting (2011) describes how society is physically designed for non-disabled people and how disabled people misfit against its normative limits.

11 I echo Krysia Waldock in this approach (2021), who writes, “I won’t be listing what Autism is or what the statistics are. Being Autistic and having faith are acutely personal parts of my life; placing them into a rubric of a typical Autism essay would be highly insensitive. I am an Autistic, it is part of my identity in the same manner as being a Christian.”

12 Citational practices are political (Ahmed, 2017); I primarily cite neurodivergent writers in this article.

13 In the US and UK, the vast majority of autism research funding goes to genetic and scientific research into causes and cure (Singh et al., 2009), a bias about which autistic people have expressed concerns (Pellicano et al., 2014).

14 As Milton explains it, “when autistic people and those not on the autism spectrum attempt to interact, it is both that have a problem in terms of empathising with each other: a ‘double empathy problem’” (2017, p. 13); this becomes a serious problem when neurotypical framework is imposed onto an autistic person’s interactions.

15 (Allison, 2019; Jacobs & Waldock, 2020). To be clear, I am not trying to diagnose a biblical character with any ‘condition’ here. I am retelling the story of one who sparks recognition in me; a resistant reading (Exum, 1993), in defiance of a neuronormative theological “hegemony of the average” (Hull, 2003, p. 22) which represents biblical characters solely as neurotypical.

16 (Barclay, 2008, p. 342).

17 Elsewhere I have compared the approaches of critical disability theory and pastoral theology of disability. The former is influenced by disability theory and disabled people’s perspectives (Jacobs, 2018).

18 Although neurodivergent people choose different ways to describe ourselves, identity-first language – “autistic people” – is the preferred term of a majority of autistic people (Botha et al., 2023).

19 So Hills et al. write that up to half of autistic people have “severe autism” and will never develop “functional speech” (2019, pp. 2–3). But this link is not clear. Low IQ has been over-estimated in autistic people (Dawson et al., 2007); one recent study found 18% of autistic children had additional learning disabilities (Memmott, 2019 [2022]; Roman-Urrestarazu et al., 2021). Dividing autistic people by functioning labels – a poor predictor of support needs (Alvares et al., 2020) – risks obscuring our commonalities (Bowman, 2021) and the social barriers we all face, from unmet health needs and higher mortality rates to high suicidality (Pellicano et al., 2014).

20 “[S]peaking and non-speaking is not dichotomous because autistic people can move between speaking in some environments or spaces and not in others” (Botha et al., 2023, p. 870).

21 So, for example, Leidenhag writes that “attention to those we label ‘disordered’ forces us to interrogate our own presumptions of order” (2022); Macaskill writes “to think properly about autism brings with it a body of further blessings for the church” (2022, p. 435). Autistic people point back to a neurotypical-led church here.

22 One exception is Macaskill, who acknowledges that autistic people have been hurt by the church: “The church is not a safe place just because it is the church” (2019, p. 96). Pastoral theology has more often discussed exclusion in society, following Thomas Reynolds’ disability studies-based theology (2008). Even so, some theologians express unease with concepts from disability theory, such as ableism (Brock, 2022; Swinton, 2011).

23 This is in the context of an “empirical turn” towards theological ethnography (Kaufman, 2015; Marti, 2016).

24 “Nothing about us, without us” is a maxim of the disability and neurodiversity movements (Silberman, 2015).

25 Not all neurodivergent people consider themselves disabled. However, the neurodiversity paradigm is a social model, showing how we are disabled by barriers in a neuronormative society (Walker, 2021).

26 The same pastoral model of disability frames theological approaches to neurodivergent people and disabled people more generally (Jacobs, 2018).

27 These are not uncontested stories. Brock writes, “The practice of telling stories to establish the moral authority of the speaker… needlessly narrows the discussion and excludes important voices” (2019, p. 242). Rosemarie Garland-Thomson (1997) would agree that stories told by non-disabled people to legitimize their right to speak about disabled people are problematic. However, obscuring the difference in positionality between stories about us and disabled and neurodivergent people’s own untold stories of our marginalisation can reinscribe the silencing of disabled and neurodivergent voices in theology (Jacobs, 2018).

28 There is very little theology engaging with ADHD (Barclay, 2008) and almost nothing on Tourette’s Syndrome – one exception is Beers (2020).

29 In their research on autistic sociality, Rosqvist et al. argue that “we need to explore alternative possibilities for understanding friendships, ones that do not necessarily include the dominant NT ideals of researchers” (2015).

30 Anthony did significant emotion work here to compensate for the double empathy problem. Neurodivergent people are often known – and sometimes pathologized – for our strong sense of justice, in defiance of the idea that we lack theory of mind (Russell et al., 2019; Schäfer & Kraneburg, 2015).

31 We all need “the right to participate in the ‘living tradition’ or the reflexive arguments” of a society or institution (May, 2011, p. 368; Shotter, 1993).

32 However, testimony is “mere ‘story-telling’” (Stone & Priestley, 1996, p. 20) without theory about the social conditions and inequalities that produce the situated knowledges of marginalized groups (see also Radford, 2022).

33 Participants in my research critiqued theologies that fail to speak out against harmful approaches to disability, neurodiversity and distress, offering only “lightweight” responses (Jacobs, 2018, p. 215).

34 “Grudgingly opening the door a little bit is not enough,” writes Nicola Martin (2020), identifying neurotypical privilege in an academy that needs to “accommodate a widening range of approaches and thinking styles.”

35 For example, in 2019, the annual ‘Living Edge’ conference on disability and church was themed ‘Thinking Differently About God.’ Neurodivergent people reflected theologically from lived experience of autism, dyslexia, psychosis, learning disability and more, on church, the Bible and faith (Allison, 2019; Hartley, 2019).

36 (Williams, 2022, p. 195).

37 (Williams, 2022, p. 200).

38 (Williams, 2022, p. 199).

39 Adapted from Safety In Numbers: Autism, Theology and Me (Jacobs, 2022).

Additional information

Funding

No funding was received for this article. The article draws on data from a PhD study which was supported by the St Luke’s College Foundation under grant number 011J-13 and Funds for Women Graduates.