A discussion on autistic people in Churches, theology of autism and including autistic people in communities

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Krysia Waldock, Naomi Jacobs and Damian Milton

In this blog, we summarise and pull-on threads from the discussion that three researchers had after our third Tizard Autism Journal Club presentation. The presentation was on Krysia Waldock (University of Kent) and Professor Rachel Forrester-Jones (University of Bath) paper ‘An Exploratory Study of Attitudes toward Autism Amongst Church-Going Christians in the South East of England, United Kingdom’.

The discussants were Dr Damian Milton (Lecturer in IDD at Tizard Centre, University of Kent), Dr Naomi Lawson Jacobs (Independent Scholar and Researcher) and Krysia Waldock (PhD Candidate in IDD at Tizard Centre, University of Kent).

We began by discussing to what degree these findings are applicable to other churches or faith groups, other social groups and communities and how.

Naomi began with mentioning ideology, and how various ideologies frame perceptions of autism in churches, notably suggesting the findings highlight there’s no unified theology of autism. Naomi then suggests what we may be seeing in this study is an uncritical melding of secular and Christian ideologies towards autism, as churches have a lack of theological frameworks to use to understand autistic people. In their PhD thesis, Naomi found that they have more frameworks to understand disability, more generally, contrasting with the limited range to draw on when it comes to autism specifically. This lack of theology, and inserting of theory without question, opens an uncritical space where ableism and deficit models of disability can flourish. This includes participants in Naomi’s (completed) PhD research, which found that disabled people are often viewed as evidence of the fall, or a flawed broken world. This ideology stems from Augustinian theology, and may link to deficit model thinking found in the paper.

Naomi also touched on how applicable these findings are to other churches; ‘Different churches will have different theologies of varying ways of constructing ideology and power and authority. And that’s even more the case when it comes to different religions, and they’ll have different ways of understanding autism as a result of those varying ideologies’. Cultural values also need to be taken into account with different religious groups. They then suggest that research into different denominations of attitudes to autism is needed, and suggest the paper fantastically starts asking the questions as an exploratory study, and starts building some of the models that would be really useful for that research. They also touched on differences between religious and non-religious groups when it comes to understandings of autism, with faith groups having theological paradigms for moral and ethical thought. Naomi ended their thoughts for this question considering other social groups and the Church’s position within society, with: ‘church goers are shaped by the same societal ableism as everyone else and have different levels of familiarity with autism’. The fact that churches are not in a religious vacuum is incredibly important to note.

Damian agreed with Naomi, with his experience of social groups, notably table tennis, which doesn’t have a belief system intertwined with it, but is a community of practice. Damian reflected on how he and his son were treated in that space, and how he was treated as the font of all knowledge and a ‘go-to’ person for other players enquiries regarding anything related to autism. However, Damian did mention one key similarity with religious and humanist groups – the fact there is group leadership and sometimes cliques within the group dynamics; ‘if you can get the training to the leadership in this, it can help set the tone’.

Krysia agreed with the theology or belief system dynamic of the groups as being the glue which sticks them together, and that it is this which can be the sticking point to any change or growth, especially in regards to this field of thought. Krysia and Naomi also both agreed regarding the leadership as having the power, and Naomi also touched on the question of ‘who has the power to define’. This is incredibly key in a field where the slogan ‘Nothing for us, without us’ is central to how power dynamics are modelled in critical disability studies and critical autism studies, which is can be missing within the context of churches (although not always – note the idiosyncratic practice theme of the paper). Certainly in regards to the ‘who’ within church or theological settings, the priest, biblical scholar or theologian having the power to define theologies does take away expert by experience frameworks that exist, for example ‘nothing for us without us’, and the difficulty in questioning some theologies that may be associated with tradition. Naomi also touched on many liberationist theologies being grass roots, and Krysia and Damian signposted to Ann Memmott’s fantastic autism guidelines for churches, linked here: https://www.oxford.anglican.org/wp-content/uploads/2019/03/Autism-Guidelines-2019.pdf. Ann is another key thinker in this field whose work needs further dissemination to all churches and church communities, and not just those who already know the need for such work. It is hoped this discussion will encourage more communities to examine this guidance and engage with autistic thinkers in this field.

The fact that there is very little theology of autism written by autistic people from a lived experiential position and sensitive to critical autism studies and expert by experience frameworks was emphasised by Naomi, with autistic people often limited by the current power structures, including how we define God. To quote Naomi: ‘We see a rhetorical impulse to welcome disabled and neurodivergent people in order to open the doors to people, but we’re very little examination of who has the power to open the doors and how churches kind of maintain who has the power to open the doors.’ Krysia’s (ongoing) PhD research highlights the impact of power, with Krysia’s current ongoing literature review demonstrating the role that power has in the social inclusion and belonging of people with minority identities (including autistic people), which is ultimately one outcome of the power dynamics at play here.

This also links to how we define ‘church’ more broadly, including how we ‘do church’. Autistic people are often seen as outsiders, yet we are actually already part of it. This related to the first question asked by the audience, around audio sensitivity and has this also been found in this paper. Krysia stated how yes this was reported, and also in her own anecdotal experience too. Certainly, this also links to aspects of tradition, limitations on resources for change and also leadership mindset too in terms of power to change (or not). Krysia then touched on how many autistic people can meet in more meta-physical spaces, and churches can be a part of this (take Disability & Jesus, the Ordinary Office, YouBelong and Creativish as examples of meta-physical spaces to gather for Christians, and Autistic Twitter for autistic people more broadly). COVID-19 has also dramatically shifted the need for meta-physical spaces, with changes in the agency of sensory experience (e.g., you change the volume to suit your needs, but attitudinal barriers remain and other barriers may exist, for example no internet access).

One comment from the audience spoke of how there may be similar findings in in terms of ableism and idiosyncratic ways of working with autistic colleagues and students, which Damian agreed with after many years of working in FE and HE settings. Support available is idiosyncratic, as is the understanding of the people in various organisations, both for the disabled student and the disabled staff member.

One final question was posed to the panel regarding if certain sorts of religious communities might be more likely to attract and retain autistic people. Krysia spoke about the aspect of ‘goodness of fit’ to the individual at hand. Naomi mentioned that a few Anglican priests who are autistic who’ve written about what it is about Anglican and Catholic High ritual that works for some autistic people in the kind of orderly and organized ritualistic setting, something they find helpful themselves, but are aware it won’t be the correct fit for every autistic person. Personality preferences and theological beliefs would also need to be taken into account as part of this ‘goodness of fit’.

The discussion was wrapped up by Damian asking Krysia about some of her ongoing PhD work, and how this links. Krysia spoke about her study exploring the social inclusion and belonging: the views of autistic people, in particular the role of social interaction, agency and the double empathy problem’s tentative link to experiences of social inclusion and belonging. This is relevant to this setting given churches are gatherings of people, which can be defined as communities of practice and are inherently social in nature.

To access the paper follow https://doi.org/10.1080/23312521.2020.1776667 or email kew48@kent.ac.uk for a copy

To listen to the presentation and discussion, follow  https://www.youtube.com/watch?v=XnW8dRfPOSo

If you would like to find out more about Naomi’s research, please visit: http://naomilawsonjacobs.com/

References:

Jacobs, N. L. C. (2018). The Upside-down Kingdom of God: A Disability Studies Perspective on Disabled People’s Experiences in Churches and Theologies of Disability. Unpublished PhD Thesis. SOAS, University of London.

Memmott, A. (2019). Welcoming autistic people in our Churches and Communities [PDF]. Accessed 26th April 2021, retrieved from: https://www.oxford.anglican.org/wp-content/uploads/2019/03/Autism-Guidelines-2019.pdf

Waldock, K. E., & Forrester-Jones, R. (2020). An Exploratory Study of Attitudes toward Autism Amongst Church-Going Christians in the South East of England, United Kingdom. Journal of Disability & Religion, 24(4), 349-370.

Waldock, K. E. (2021). ‘Doing Church’ during COVID-19: An Autistic reflection on Online Church. Canadian Journal of Theology, Mental Health and Disability. 1(1), 66-70.

Waldock, K. E., McCarthy, M., & Bradshaw, J. (ongoing). The social inclusion and belonging of minority identities in Christian, Muslim, Hindu and Humanist spaces: A systematic review.

Autism Ideas Café and Participatory Autism Research Symposium

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Bishop Grosseteste University’s LORIC Autism Ideas Café and the Participatory Autism Research Collective (PARC) held a joint Research Symposium event 24th March 2021.

The event saw four participatory autism researchers showcase their research via short presentations and discussions with other researchers in front of an audience of over 70 attendees (many of whom were autistic) who comprised of individuals, allies, professionals and academics from around the world.

Recordings from the event can be found here:

Research topics discussed were:

“The Precariat” is a good name for a band: Autism, employment and the creative industries – Examining the experiences of autistic individuals as they transition from university into employment within the creative industries.

Parents’ stories involving autism diagnosis for their child – Exploring the advantages and disadvantages of having an autism “diagnosis”.

Autistic Teachers – The lived experiences of autistic professionals as they enter, manage, stay in, or exit the profession

Exploring classroom literature from an autistic viewpoint – How lenses of perception can impact on emotional interaction with a text. 

Dr Clare (Kate) Lawrence (Senior Lecturer in Teacher Development at BGU, East Midlands Convener for the Participatory Autism Research Collective (PARC) and L.C.C. Autism Champion) explained that she wasvery excited by our first event as part of the Participatory Autism Research Collective (PARC). This symposium showcased how BGU is embedding participatory autism research into our work through interesting and innovative projects that will further enrich and widen understanding of autism”.

This event was funded by the Research England Strategic Priorities Fund.

Connecting and networking online

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1st December 2020 

Following the postponement of the PARC conference and other face to face activity, we would like to encourage members of PARC, and those interested in attending PARC events, to comment or contact us with their areas of research or wider interest. We would like to put people in contact with others in a similar research and wider interest area. We are aware some people may already know each other, and this would support the aim of us connecting and networking online together. 

Our hope is these groups can meet, have discussions, encourage each other and possibly work together if the occasion arose (e.g. funding bids, research projects). Another possibility is for these groups to meet to discuss research in the form of a reading group. In the current climate, this is likely to be online, however in the future we hope to be able to convene these on a face to face basis.

We would like this to be as organic and natural as possible, so people can meet via the software or communicative means which is best for them. 

One of these groups that will be starting is a new Journal Club. This Journal Club will be hosted by the Tizard Centre and PARC in partnership, focusing on autism, participatory research and critical autism studies. This will take the form of a reading and discussion group. People who have attended PARC events in the past are welcome, as are people who have not attended before. Both academics and those not currently in academia are welcome. It will run for the first time on the 16th December 2020 at 4pm on Zoom. We hope to run it bimonthly. Further information will be posted about this first event soon. 

We hope we can bring people together who may not have met otherwise, and create communities which encourage their members, and develop creative and new ideas. 

Krysia Waldock and Damian Milton

Meanwhile, in America: From “Combating Autism” to “Autism CARES,” The Language Has Evolved. What About the Substance?

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By Alessandra Suuberg

This fall in the United States, the federal government allocated $1.8 billion to autism research, authorizing a five-year extension of the Autism Collaboration, Accountability, Research, Education and Support (CARES) Act[1]. Continue reading

The Neurodiversity Reader – Call for Submissions

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The Neurodiversity Reader – Call for Submissions
Twenty years on – tracing the influence of the neurodiversity movement on theory and practice.

This is a call for submissions for an upcoming publication with Pavilion Press in association with PARC. Deadline for submissions of full drafts is August 30th 2019. Selected submissions will be taken forward for the published reader, whilst others will be published on the PARC website in a series of blogs (providing they do not contain material considered offensive by the editors).

Submissions should be between 1500 and 7000 words. Submissions do not have to be academic in nature and we would suggest to authors to write in an accessible style in order to be of value to a broad audience. Please send submissions to damianmilton.sociology@yahoo.com Continue reading