Sonic bombardment, noise hypersensitivity and ethics: A response to Fodstad and colleagues.

Sonic bombardment, noise hypersensitivity and ethics: A response to Fodstad and colleagues: ‘Assessment and treatment of noise hypersensitivity in a teenager with autism Spectrum Disorder’

By Monique Botha, Aimee Grant, Ann Memmott, Damian Milton, Amy Pearson, Gemma L. Williams and Richard Woods (joint first authors).

Abstract

This commentary – provided by a group of Autistic researchers – reflects on a case study trialling a ‘modified Cognitive Behavioural Therapy intervention’ to address the ‘noise hypersensitivity’ and associated behaviours of an Autistic teenager, ‘Aaron’. We identify serious flaws in the evidence base behind the ‘therapy’: including failing to account for divergent Autistic sensory reactivity, aiming to remove ‘stimming’ behaviours and promoting masking. We challenge the lack of informed consent reported as given by either Aaron or a proxy and the absence of any reported ethical approval for this case study. We also strongly condemn the methods of sonic bombardment delivered upon Aaron under the guise of ‘therapy’. We conclude with three questions around the processes that led to the original article’s publication. 

Introduction

In an article published earlier this year in the Journal of Autism and Developmental Disorders, Fodstad, Kerswill, Kirsch, Lagges and Schmidt (2021) report on a single patient case study which aimed to assess whether distress responses to noise sensitivity in an Autistic adolescent could be reduced using what they referred to as a ‘modified Cognitive Behavioural Therapy (CBT)’ intervention. The data reported was taken from a 16-year-old Autistic young person with mild intellectual disability (‘Aaron’), who had been admitted for outpatient clinical assessment and treatment of what the authors termed ‘severe problem behaviour’. This behaviour, demonstrated in the presence of loud or unexpected noise, reportedly manifested in self-injury, aggression towards other people/items, and attempts to escape. The authors report on their initial assessment of noise avoidance (which they label as ‘phobic’), functional analysis to assess links between noise and behaviours, assessment of coping mechanisms, and final treatment evaluation. 

As a group of Autistic researchers, we hold a number of grave concerns around the ethical basis of the study itself, its methodology, and its publication in its present form within the Journal of Autism and Developmental Disorders. We reported these concerns to the publishing journal in June 2021. The (single) peer reviewer and the journal’s editor refuted the merits of our concerns, but failed to satisfy them, allowing us no right to revise and resubmit our commentary. For this reason, and because we still have serious concerns about the ethics of Fodstad et al’s case report, we present the substantive points here for consideration by the wider community of Autism researchers. We hope that this will stimulate conversation leading to more ethical treatment for Autistic inpatients in the future.

In this article we thoroughly consider the paper by Fodstad et al. (2021) and provide an ethics-based critique founded on three substantive points: potential harm to the participant, lack of informed consent, and poor scholarship. First, the premise and method of intervention itself was highly unethical in relation to the potential to harm the patient. There was no solid evidence to suggest that this experimental intervention was the best available approach, and a core principle of ethical intervention-based research is making participants aware of alternatives. This harm occurred in two ways: the first by means of exposing the patient to painful sonic bombardment methods which have the potential to harm recipients psychologically and physically; and the second by means of dehumanising practices.  

Second, we have serious concerns in relation to the apparent absence of any attempt to obtain informed consent from the subject in this case study or discuss the intervention with them in advance. Failure to note whether the patient attended for therapy on a voluntary or mandatory basis is also important and missing. As such, the publication does not meet best practice in ethical reporting as identified by Committee on Publication Ethics (COPE): a body to which the Journal of Autism and Developmental Disorders is subscribed. COPE (2008) state in relation to medical case studies that ‘consent should be sought and a disclaimer added to the effect that patients should accept that no-one but themselves would be able to recognise them and that patients need to understand that, although each is unique, there are many like them who share similar problems’. 

Third, the premise of the treatment was based on outdated research, given that the majority of cited papers are over five years old and also centred around contested theory which was used to justify the allegedly therapeutic intervention. This includes failure to consider relevant research in relation to sensory profiles and overwhelm within Autistic individuals; and aiming for the ‘therapy’ to produce masking, which is known to be harmful for Autistic people (Mandy, 2019). 

We conclude with three questions relating to the processes that led to the original article’s publication in the Journal of Autism and Developmental Disorders.

Autistic sensory profiles and sensory overwhelm

The ‘atypical sensory reactivity’ (Hannant, Tavassoli and Cassidy, 2016: 2) of Autistic individuals has been observed and reported from as far back as the early descriptions by Kanner (1943), although it has only recently appeared in the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5, American Psychiatric Association, 2013) and the forthcoming 11th edition of the International Classification of Diseases (ICD-11, World Health Organization, 2018).

This inclusion of sensory hyper- and/or hyposensitivities in the diagnostic criteria for autism is based on persuasive modern research recognising the neurological basis of autistic differences in sensory processing across auditory, visual, tactile, olfactory, gustatory, and interoceptive domains (see Proff et al., 2021, for recent systematic review). Consensus is also building around the understanding that these neurological differences may cascade towards some of the ‘autistic particularities of moving, perceiving, and emoting’ (de Jaegher, 2013: 1), as well as behavioural characteristics and cross-neurotype social difficulties (see for example: Belek, 2019; Beardon 2017; Bogdashina, 2010, 2016; Constant et al., 2020; de Jaegher, 2013; Donnellan, Hill, and Leary, 2013; Garfinkel et al. 2016; Hannant, Tavassoli and Cassidy, 2016; Jackson-Perry et al., 2020; Marsh et al., 2013; Milton, 2012; Milton, Heasman and Shepard, 2018; Nicotera et al 2019; Proff et al., 2021; Smith and Sharp, 2013; Tomchek and Dunn, 2007; Williams, 2020). 

Autistic auditory processing differences include, in addition to a typically reduced automatic filtering of concurrent sound streams (Lepistö et al, 2009), an increased tendency to extract local rather than global features from melodies (Bouvet et al., 2014; Mottron et al., 2000) and a tendency towards a reliance on incoming auditory data over habituated sensory predictions (Goris et al., 2018; Hudac et al., 2018). These are potential factors in the distress caused by continued exposure to problematic or loud sounds. Aside from this, two additional co-occurring conditions are common among Autistic individuals: hyperacusis and misophonia (Williams, He, et al., 2021; Williams, Suzman et al., 2021). These factors and co-occurring conditions are both legitimate functional impairments at the level of sensory processing that can cause extreme levels of distress or physical pain when exposed to loud, or repetitive noises.

Hyperacusis is defined as a hearing disorder characterised by an increased sensitivity or reduced tolerance of sound at levels that do not typically cause distress to others (Fackrell et al. 2019; Williams, Suzman et al., 2021). Importantly, hyperacusis is distinct from phonophobia – a phobic response to specific sounds or categories of sounds (Fackrell et al. 2019; Williams, Suzman et al., 2021). In a recent systematic review (Williams, Suzman et al., 2021), hyperacusis was found to be highly prevalent among Autistic individuals, and crucially: across the lifespan. Misophonia, on the other hand, is a ‘chronic condition in which a person experiences autonomic arousal (analogous to an involuntary “fight-or-flight” response) to certain innocuous or repetitive sounds such as chewing, pen clicking, and lip smacking’ that triggers a high arousal response of the sympathetic nervous system (Edelstein et al., 2013). Both of these conditions ought to be thought of more like the potential analogues of stereoblindness (a cognitive inability to merge incoming binocular data to generate depth perception) in the visual domain, or synaesthesia (an atypical fusion of cross-modal sensory experiences, Ward, 2013): not as behaviours that an individual can be trained out of.

‘Challenging’ or ‘problem’ behaviours (Fodstad et al., 2021) arising when an Autistic individual with auditory hyper-sensitivity, hyperacusis or misophonia is exposed to auditory stimuli that provoke a distress response should be understood in terms of biophysical overwhelm or – in other words – sensory overload: in which a person loses some or all of their normal functioning (Bogdashina, 2016: 103). As Proff and colleagues have argued (2021: 31), ‘instead of impaired perception, we need to understand sensory differences as individual facets of a highly diverse and heterogeneous phenotype with equally varying emotional, social, and behavioral implications’. Given the biological underpinning for divergent sensory profiles described above, the utility of any intervention which fails to address the body should be called into question. 

Sonic bombardment and dangerous volumes

Furthermore, there are ethical and safeguarding issues surrounding bombardment with constant sound over extended periods of time – as Aaron experienced. In the first case, such techniques are a common to the methods of sonic bombardment, as used by the US military against prisoners in Abu Ghraib, Camp Nama, Guantanamo Bay, Mosul Air Force Base and beyond (Hill, 2012) and by the British army against the ‘Hooded Men’ in Northern Ireland (Newbery, 2009). Continuous white noise, music, or distressing sounds are played in these instances so as to ‘coerce compliance’ (Hill, 2012: 218), and to induce ‘sonic dominance’ (Henriques, 2003; Hill, 2012) over the prisoners’ bodies and bodily responses by virtue of its all-pervasive nature. While the noise was not continuous over many hours, we note that Aaron experienced a form sonic dominance, in a small (4.4m x 4.8m – Fodstad et al., 2021: 1813) padded room where sound (specifically those sounds identified to be most distressing to Aaron – Fodstad et al., 2021: 1814) was used to coerce researcher-intended behaviours. This, when compounded with potential underlying biological mechanisms which generate sensory sensitivity in Autistic people (as described above), create a situation which undoubtedly can cause overwhelming distress.

Moreover, it is important to highlight that the upper volume of the distressing sounds played from five ceiling-mounted speakers (thus increasing the oppressive effect) was set at 85dBs. In the USA (where the study is assumed to have taken place: due to the authors’ affiliations), in recognition of the fact that 85dBs is the threshold level at which hearing can become damaged over time (Royal National Institute for Deaf People – UK, 2021) the federal Occupational Safety and Health Administration Standards (US Department of Labour, 2000) require employers to implement a hearing conservation program when noise exposure reaches 85 dBs averaged over a working day. For an individual with evident auditory sensitivities, this volume may have been experienced as even louder, more dominant and more painful.

Self-Determination

Fodstad and colleagues (2021) report that the aim of their intervention was to increase self-determination through teaching independent coping strategies, aligning their aims with the values suggested in Cheak-Zemora et al. (2019) for increasing self-determination in Autistic young adults. Cheak-Zemora et al. (2019) used caregiver report to assess self-determination in Autistic young people. They found that caregivers rated their young adult’s capacity to engage in self-determination as low in comparison to how they rated the opportunities provided to engage in self-determination in the home. The authors stressed the importance of increasing a young person’s understanding of self, self-advocacy, and self-regulation, and noted the limitations of using parent reports to measure self-determination. Arguably a focus on trying to reduce an external response to sensory distress, and encouraging non-native coping strategies as opposed to providing the opportunity to self-regulate through stimming or the use of assistive technologies (i.e. noise cancelling headphones) is not aligned with increasing self-understanding or advocacy, nor is it conducive with generating agency. Despite Fodstad and colleague’s (2021) assertions that there is little known about how to assess and treat noise sensitivity, Fodstad et al. acknowledge themselves that they did not use a (validated) sensory questionnaire. There is a body of literature on the assessment (i.e. Tavassoli et al. 2014) and treatment (Pfeiffer, Duker, Murphy and Shui, 2019; Pfeiffer, Erb and Slugg, 2019) of noise sensitivities in Autistic people. This research stresses the importance of sensory validation (Landon, Shepherd, and Lodhia, 2016), environmental adjustments, and helping a young person to recognise their sensory stressors so that they can identify and implement coping strategies that allow them to flourish; such an approach is in line with a stress management plan outlook to reducing distress behaviour, as advocated by a person centered Low Arousal Approach (McDonnell, 2019). 

Masking

The ‘success’ of the methods reported in Fodstad (2021) are predicated on the basis of a reduction in distress behaviour displayed by Aaron in response to aversive sounds, including a small reduction in heart rate elevation, and independent use of the ‘coping strategies’ taught during the intervention. The training of the researcher-approved ‘coping strategies’ occurred during sessions in which Aaron was prompted to choose a response in order to elicit praise from the researcher, as the aversive sound was systematically increased. The suppression of a native response in favour of a non-native response is known as masking (Milton and Sims, 2016; Holliday-Willey, 2014; Pearson and Rose, 2021), camouflaging (Hull et al. 2017), compensation (Livingston and Happé, 2017), concealment (Botha & Frost, 2020), and adaptive morphing (Lawson, 2020). Autistic people have reported that masking of a distress response to aversive sensory stimuli, and suppressing associated coping mechanisms such as stimming, have a negative impact (Kapp et al., 2019; Miller, Rees and Pearson, 2021). This is only one aspect of the broader deleterious effects masking has upon Autistic wellbeing (Mandy, 2019). The act of concealing behaviours (including coping strategies relating sensory sensitivities) is itself a form of minority stress which predicts significantly worse wellbeing for Autistic people (Botha & Frost, 2020).

Behavioural interventions that focus on removing innocuous native coping mechanisms like stimming, and replacing them with strategies that clinicians view as more palatable invalidate Autistic methods of self-regulation. Furthermore, it prioritises the ‘gaze’ of non-Autistic people over the comfort of Autistic people. This comes across as particularly disingenuous when Autistic coping mechanisms (i.e. stimming and covering ears as a response to aversive noise) are labelled as ‘stereotypy’, in comparison to behaviour such as ‘singing to self’ and ‘self-hugging’, which were the clinically ‘functional’ alternative coping mechanisms Aaron was trained to use in Fodstad et al. (2021).  We must stress there is no evidence to suggest that non-Autistic ways of being are superior to Autistic ways of being, and vice versa (Beardon, 2007). Moreover, a majority of Autistic persons desire more research into better support and services (Pellicano, Dinsmore, and Charman, 2014). Many neurodiversity supporters advocate depathologising autism, removing it from the diagnostic manuals (Chown and Leatherland, 2018). This begs the question as to why Fodstad et al (2021) replaced Aaraon’s natural coping strategies with ones of their own preference. 

Dehumanisation

We have concerns over the potential dehumanisation and objectification that Aaron experienced, and which this alleged treatment facilitated. Dehumanisation includes the denial of human nature (emotional responsiveness, agency, and individuality), and human uniqueness (rationality, logic, and maturity) to people, or groups of people (Haslam, 2006), while objectification includes the denial of subjectivity and personhood (LaCroix and Pratto, 2015). Of concern is the categorisation of acts of agency, emotional responsiveness, and rationality from Aaron as evidence of pathology. For example, on exposing Aaron to sounds specifically designed to cause emotional distress, the authors then describe the following behaviours as ‘phobic avoidance’:

‘facial grimacing, crying for 3 [seconds] or more (with tears), yelling/screaming for 3 [seconds] or more, nail-biting, covering ear(s) for 3 [seconds] or more, arm/body stereotypy, and trunk contortions.’ (Fodstad et al, 2021; 1814).

Facial grimacing is an emotional responsiveness to an experience of discomfort, as is crying, nail-biting, covering ears, moving the body and arms, and yelling or screaming. In particular, it is noted that none of these behaviours are channelled towards bystanders; they are individual acts of agency, which express subjective discomfort from Aaron involving his own body. Despite covering one’s ears when being exposed to overwhelmingly loud noises (55-85 dBs) being a completely rational act to protect oneself, and one’s hearing, Aaron is ascribed an irrationality and childlikeness, and denied the agency to respond in ways which come naturally to him. The volume range at which Aaron experiences said discomfort should not actually matter, because acknowledging personhood, and a person’s right to subjectivity, means acknowledging the individual range of a person to withstand a certain discomfort – a level which may be lower given there are biophysical underpinnings to sensory sensitivity in Autistic people. To claim that Aaron (or anyone) should be able to withstand certain sounds, at certain frequencies, in ways which hide all emotional responsiveness is inherently dehumanizing and objectifying, by definition. This is of key importance because objectification and dehumanisation facilitate moral disengagement from, and permissible violence against, dehumanised people (Haslam and Loughnan, 2014; LaCroix and Pratto, 2015).

Consent

The Journal of Autism and Developmental Disorders is a member of the Committee on Publication Ethics (COPE), and as such it is expected that papers published in this journal will (1) display high ethical integrity, and (2) provide detail about the ethical guidelines and procedures used to conduct research. The World Medical Association (WMA) Declaration of Helsinki (WMA, 2013) outlines ethical principles for conducting medical research with human subjects, including the need for ethical approval prior to data collection, the importance of informed consent, and the consideration that ‘vulnerable individuals or groups of individuals’ may have an increased likelihood of being harmed. The WMA definition of a ‘vulnerable person’ in medical research is unfortunately vague, but is generally argued to include those who may be unable to make autonomous decisions (such as children) or who lack basic rights and freedoms (Zion, Gilliam, and Loff, 2000). Although Fodstad et al. report on a single case where the requirements for ethical approval are less clearly stated, we would expect them to follow best practice guidance. Both COPE (2008) and the BMJ (2021) – formerly known as British Medical Journal: a leading medical journal which publishes case studies – recommend obtaining consent prior to publication.

The ‘Compliance with Ethical Standards’ statement has not been completed in Fodstad et al. (2021), thus it is not clear whether institutional or clinical ethics were sought prior to the commencement of the experimental intervention or publication of this case study, as neither are explicitly reported in the manuscript. The authors also neglected to report on procedures (if any) that were used to gain informed consent, either from Aaron or his guardian and it is unclear as to whether Aaron was provided with the opportunity to withdraw from the intervention. This is particularly concerning given that Aaron’s age, and intellectual disability, would certainly place him under the WMA definition of ‘vulnerable’. Fodstad and colleagues (2021) do not specify any steps taken to minimise any harm that might have come to Aaron during the intervention. Additionally, they do not report on the long term impact of the intervention: a shortcoming that is common in behavioural interventions (Bottema-Beutel, Crowley, Sandbank and Woynaroski, 2021). 

Recent concern has been raised around the lack of conflict of interest (COI) reporting in behavioural intervention research: as a general, more systemic issue (Bottema-Beutel and Crowley, 2021) and more recently, specifically within the Journal of Autism and Developmental Disorders (Luterman, 2021). Fodstad et al. (2021) declare that they have no conflicts of interest, however multiple authors meet the standards for a COI as specified in Bottema-Beutel, et al. (2021) for example affiliation with, or employment by, a clinical provider. There is a lack of transparency about where the data reported in the paper was collected, the connection of the authors to the clinic in which Aaron received treatment, and any gain that might come from publication of this study, financial or otherwise. Multiple researchers have criticised the lack of quality control in autism intervention research, and the relationship that this has with poor quality ethics (Waltz, 2007; Bottema-Beutel, et al., 2021). Furthermore, we have concerns because while it is not unheard of that authors and researchers publish in journals for which they are on the editorial board, this conflict of interest is compounded with the other conflicts of interest, the lack of transparency, and the failure to disclose key consent information to meet the COPE requirements for the journal.

Consulting with Autistic expertise

Given the often markedly divergent dispositions of Autistic and non-Autistic people and the difficulty in mutual understanding that can occur across these dispositional differences (e.g. Brewer et al., 2016; Edey et al., 2016; Heasman and Gillespie, 2018; Hubbard et al., 2017; Milton, 2012; Sheppard et al., 2016), we feel strongly that guidance by ‘Autistic expertise’ (Gillespie-Lynch et al., 2017; Milton, 2014; Woods and Waltz, 2019) is an essential component of any ethical autism research. We strongly believe that for all autism research – but particularly so in the instance of research and case studies trialling new interventions – Autistic consultation should be an integral part of the process: across all stages. This position is in line with the drive in the past decade to move towards meaningful participatory research (e.g. see: Aspis, 2021; Chown et al., 2017; Fletcher-Watson et al., 2019; Gillespie-Lynch et al., 2017; Happé and Frith, 2020; Milton and Bracher, 2013; Nicolaidis, 2012; Pellicano, 2014; Pellicano and Stears, 2011; Woods and Waltz, 2019) and is founded on the ethical principle of ‘nothing about us without us’ (Charlton, 2004).

There are many different ways of engaging with Autistic expertise: some more meaningful than others (see Fletcher-Watson et al., 2019). We would like to argue, however, that any (even tokenistic) engagement with Autistic expertise would likely have highlighted grave concerns around this approach. For example, in an informal poll – conducted over Twitter and carried out in a personal capacity by a trusted autistic advocate – respondents were asked ‘whether they believe autistic people should be trained to cope with noise instead of wearing noise cancelling headphones’ with the option to answer ‘yes’, ‘no’ or ‘not sure /maybe’ (Memmott, 2021). Of over 4500 responses, 93.3% answered ‘no’. While informal polls do not share the same rigour as formal academic research, and are limited by potential bias of sampling, at over 4500 responses we believe this lends a good indication of whether the researchers were engaging in actions that would be supported by many in the autistic communities. We firmly believe that all autism research should involve meaningful engagement with Autistic expertise in the form of genuine co-productive methodologies. However, where this is neglected, a simple litmus test like this online survey could save a lot of difficulties for researchers, and potentially a lot of distress for autistic individuals. 

Conclusion

In the above we have outlined some of what we consider to be extremely serious ethical and methodological concerns surrounding the case study reported on by Fodstad and colleagues (2021). We have addressed three substantial issues: (1) potential harm to the participant (by means of sonic bombardment, the enforced suppression of native coping mechanisms such as stimming, and the promotion of masking behaviours); (2) apparent lack of informed consent; and (3) poor scholarship. 

While the focus of this response paper is directly levied at this specific case study report and the processes within the Journal of Autism and Developmental Disorders that led to its publication, our essential message is universal. Research – including case studies – involving Autistic participants must be undertaken in a humane, ethical manner, respecting individual needs and ways of being and informed by the expert guidance of Autistic stakeholders. Academic journals whose remit it is to publish autism-related research (or case study) findings must rigorously uphold the ethical standards of the papers they select to bring to the attention of a wider audience. 

Finally then, we consider the following questions to be of great importance and would appreciate hearing the Journal of Autism and Developmental Disorder’s response: 

  1. Why have no details been published regarding the ethical guidelines and procedures surrounding this case study, as per COPE standards (to which this journal subscribes) and the WMA Declaration of Helsinki (2013)?
  1. How has this paper progressed through peer and editorial review without identification of the clear (yet unstated) conflicts of interest (COIs)?
  1.  As a reputable journal and a community of peers, we have a joint responsibility to ensure that research is not endorsed (by its publication) which (a) does not meet ethical standards; (b) presents a serious risk of harm to participants; and (c) is inherently dehumanising. How will the Journal of Autism and Developmental Disorders remedy this present shortcoming and prevent future reoccurrences?

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Authors:

Monique Botha*; Division of Psychology, University of Stirling, Stirling FK9 4LA, UK; ORCID: 0000-0002-5935-9654;

Aimee Grant*, Centre for Lactation, Infant Feeding and Translational Research, Swansea University, UK. ORCID: 0000-0001-7205-5869;

Ann Memmott*, National Development Team for Inclusion, UK. ORCID: 0000-0002-9608-6704;

Damian Milton*, Tizard Centre, University of Kent, UK. ORCID: 0000-0003-3825-6194;

Amy Pearson*; School of Psychology, University of Sunderland, Sunderland, SR1 3SD, UK, ORCID ID: 0000-0001-7089-6103;

Gemma L. Williams*, Centre for Resilience and Social Justice, University of Brighton, Brighton, BN1 9PH, UK; National Development Team for Inclusion, UK. ORCID: 0000-0002-5162-0440;

Richard Woods*, School of Law and Social Sciences. London South Bank University. 103 Borough Rd. London. SE1 0AA, UK. ORCID: 0000-0002-8292-632X

*Joint first authors

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