PARC Critical Autism Studies – Winter Workshop 2021, 7th December 4.30-7pm (GMT)

Events

The Participatory Autism Research Collective, in partnership with the Critical Autism and Disabilities Studies Research Group at LSBU, are pleased to present this interactive session exploring a range of issues related to educational contexts with guest speakers.

This follows on from the success of our previous conferences, both in person & virtual, and provides an opportunity to build on shared knowledge & experience through learning, open discussion & networking.

We aim to provide an environment for autistic researchers to present their work relating to critical autism studies and with so many colleagues conducting a wealth of vital research, one annual event was simply not enough. Our confirmed speakers can be found below and we look forward to introducing more of these events in the future…

This set of workshops will focus on the theme of education.

Provisional programme

4.30pm – Introductions – Damian Milton

4.40pm – Accommodating Autism: The University and Its Practices of Inclusion – Mel Ptacek

5.10pm – Deterritorializing Autism in Education: Participatory Research with Autistic Young People around the Transition to Post-16 Education and Training – Michelle Dunne

5.40pm – Comfort break/networking

6pm – A critical evaluation of the statement from Conn (2019), autistic students are let down by mainstream education (age range 11-16 years) – Charlotte Mulcock

6.30pm – “I liked school, but school didn’t like me”: reflections on the autistic mainstream primary school experience – Jo Billington

7pm – Summary & close

This workshop will be delivered via Zoom. We will sent out the joining instructions the day before the event.

To register for this event please follow this link: https://www.eventbrite.co.uk/e/parc-critical-autism-studies-winter-workshops-2021-tickets-194340817617

PARC Critical Autism Studies – Winter Conference 2021, 6th December 9am-2pm (GMT)

Events

Following on from the conferences on Critical Autism Studies (CAS) that were held at LSBU in 2017-19 and our virtual conferences held earlier this year, the Participatory Autism Research Collective, in partnership with the Critical Autism and Disabilities Studies Research Group at LSBU, return with a winter conference with another fantastic programme!

We aim to provide an environment for autistic researchers to present their work relating to critical autism studies and with so many colleagues conducting a wealth of vital and insightful research, one annual event was simply not enough. Check out the programme below to see what we have lined up this time round…

Provisional programme (subject to change)

9am – Welcome & housekeeping – Neil Hudson-Basing, Corporate Events Manager, LSBU

9.05am – Intro & scene setting – Fabienne, Nicki & Damian

9.15am – The Development of Positive Attitudes of Mainstream Teaching Staff towards Autistic Students – Susie Bass

9.40am – Pros and cons of autistic parenthood – Shona Murphy

10.05am – Q&A

10.15am – Implications of inertia for understanding autism – K Leneh Buckle

10.40am –Assessing hypersensitivity to difference in autistic and non-autistic adults – Sophia Christophi

11.05am – Q&A

11.15am – Comfort break

11.30am – I am an autistic researcher not autism researcher- Non-standardised approaches in a standardised world – Daniel Lovesey

11.55am –Defining autistic identity and the role it plays in the Quality of Life of autistic adults – George Watts

12.20pm – Q&A

12.30pm – Comfort break

1pm – Militant Autecologies – Natalie Joelle

1.25pm – Exploring the benefits and impact of participation in improv comedy and autistic lived experiences: a case study – Nathan Keates

1.50pm – Q&A

2pm – Closing remarks & close

This conference will be delivered via Zoom Webinar. We will send out the joining instructions on the Thursday before the event (2 December).

To register please follow this link: https://www.eventbrite.co.uk/e/parc-critical-autism-studies-winter-conference-2021-tickets-194333305147?aff=erellivmlt

Autism Journal Club – Gemma Williams and Sarah Garfinkel, 9th November 2021

Events


Loneliness, ethical loneliness, and loneliness distress in autistic adults

Dr Gemma Williams is an autistic ESRC Postdoctoral Fellow at the University of Brighton. Her PhD research investigated communication between autistic and non-autistic speakers, looking at what has been described as the ‘double empathy problem’ (a way of framing communication problems between autistic and non-autistic people as a two-way problem, rather than as an autistic impairment) from the perspective of cognitive linguistics. 

Gemma is joined by Prof Sarah Garfinkel, a Professor of Cognitive Neuroscience and the Clinical and Affective Neuroscience Group Leader at University College London. Sarah’s research interests are in emotion processing and interoception, particularly among atypical populations.

Article for discussion: “I’m trying to reach out, I’m trying to find my people”: Loneliness and loneliness distress in autistic adults. (Quadt, L., Williams, G., Mulcahy, J.S., Silva, M., Larsson, D., Arnold, A., Critchley, H., Garfinkel, S., 2021- PREPRINT )
LINK: https://psyarxiv.com/7ckeq/
 
Suggested discussion Qs:
·        How do you make sense of the apparent relationship between sensory sensitivity and loneliness?
·        Is the tension between desiring and sometimes needing solitude and also feeling distressed by feelings of loneliness resonate with you? What can we do to support autistic individuals to achieve this balance in the different contexts of daily life?
·        ‘Ethical loneliness’ refers to the experiences of feeling abandoned by humanity – an acute form of minority stress. Is it feasible to address individual experiences of loneliness while a larger marginalisation of autistic people in society still occurs?

To register please follow this link: https://teams.microsoft.com/registration/VvqpUTI_mkSnIT4_Sapemg,78UkvmcrI02FKxbxy5l-rQ,sstEMlKfc0KRE4zCzs9JeQ,ZYrPhhzyV0KWNm5knRq41A,LEqKIfaHE0-UBBHOMQj0-g,1rrE8qJcr06iB2-nlqTNvQ?mode=read&tenantId=51a9fa56-3f32-449a-a721-3e3f49aa5e9a

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?

References

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Aspis, S. (2021) Why are disabled people with learning difficulties being prevented from leading campaigns, projects and initiatives?. Disability & Society, pp.1-6. https://doi.org/10.1080/09687599.2021.1895078 

Beardon, L. (2008). Asperger’s Syndrome and Perceived Offending Conduct: A Qualitative  Study. Doctorate of Education Thesis, Sheffield Hallam University.

Beardon, L. (2017) Autism and Asperger Syndrome in Adults. London: Sheldon Press

Belek, B. (2019) Articulating sensory sensitivity: From bodies with autism to autistic bodies. Medical Anthropology, 38 (1): 30- 43. https://doi.org/10.1080/01459740.2018.1460750 

BMJ (2021). Case Reports. [Patient Consent]. Available at: https://casereports.bmj.com/pages/authors/#consent . Accessed 29 Sept 2021. 

Bogdashina, O. (2010). Autism and the Edges of the Known World: Sensitivities, Language and Constructed Reality. London: JKP

Bogdashina, O. (2016) Sensory perceptual issues in autism and asperger syndrome: different sensory experiences-different perceptual worlds. Jessica Kingsley Publishers.

Bottema-Beutel, K., & Crowley, S. (2021). Pervasive undisclosed conflicts of interest in applied behavior analysis autism literature. Frontiers in Psychology, 12, 1631. https://doi.org/10.3389/fpsyg.2021.676303 

Bottema‐Beutel, K., Crowley, S., Sandbank, M., & Woynaroski, T. G. (2021). Research Review: Conflicts of Interest (COIs) in autism early intervention research–a meta‐analysis of COI influences on intervention effects. Journal of Child Psychology and Psychiatry, 62(1), 5-15. https://doi.org/10.1111/jcpp.13249 

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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

PARC Critical Autism Studies – Autumn Workshop 19th October 2021

Events

The Participatory Autism Research Collective, in partnership with the Critical Autism and Disabilities Studies Research Group at LSBU, are pleased to present this interactive session exploring a range of issues with guest speakers.

This follows on from the success of our previous conferences, both in person & virtual, and provide an opportunity to build on shared knowledge & experience through learning, open discussion & networking.

We aim to provide an environment for autistic researchers to present their work relating to critical autism studies and with so many colleagues conducting a wealth of vital, fascinating and groundbreaking research, one annual event was simply not enough. Our confirmed speakers can be found below and we look forward to introducing more of these events in the future…

Provisional programme

4.30pm – Introductions – Damian Milton

4.40pm – Hans Asperger’s early critique of cognitive theories of autism – Frederik Boven

5.10pm – Intuition of other’s thoughts – Caroline Hearst

5.40pm – Comfort break/networking

6pm – Demand-Avoidance Phenomena: as a biopower identity – Richard Woods

6.30pm – Debating Gender as the Basis of an Autism Typology: A Comparison of Two Kinds of Literature – Robert Manzo

7pm – Summary & close

This conference will be delivered via Zoom. We will sent out the joining instructions on the Thursday before the event (14 October).

You can register for the PARC Autumn workshop on 19th October from 4.30-7pm: available here.

You can also register for the PARC Autumn Conference taking place on 18 October from 9am – 2pm here.

PARC Critical Autism Studies – Autumn Conference 18th October 2021

Events

Following on from the conferences on Critical Autism Studies (CAS) that were held at LSBU in 2017-19 and our first virtual annual conference in the summer, the Participatory Autism Research Collective, in partnership with the Critical Autism and Disabilities Studies Research Group at LSBU, return with our second event of the year due to popular demand!

We aim to provide an environment for autistic researchers to present their work relating to critical autism studies and with so many colleagues conducting a wealth of vital and insightful research, one annual event was simply not enough. Check out the programme below to see what we have lined up this time round…

Provisional programme (subject to change)

9am – Welcome & housekeeping – Neil Hudson-Basing, Corporate Events Manager, LSBU

9.05am – Intro & scene setting – Fabienne, Nicki & Damian

9.15am – Conceptualising belonging: the views of Autistic people – Krysia Waldock

9.40am – The Development of Positive Attitudes of Mainstream Teaching Staff towards Autistic Students – Susie Bass

10.05am – Q&A

10.15am – Critical Realism, Community Psychology, and the Autism: A Philosophy and Practice of Science with Social Justice in Mind – Monique Botha

10.40am –Towards an Autistic Social Psychology – Amy Pearson

11.05am – Q&A

11.15am – Comfort break

11.30am – Money, money money: How to get funding for your autism support project – Anne-Marie Gregory

11.55am –Autism, desirability, and the dis/child within neoliberal education – Jill Pluquailec

12.20pm – Q&A

12.30pm – Comfort break

1pm – The ‘Shared Autism’ project – Clare Lawrence

1.25pm – General discussion on the day and future PARC events

1.50pm – Closing remarks

2pm – Close

This conference will be delivered via Zoom Webinar. We will send out the joining instructions on the Thursday before the event (14 October).

You can register for the PARC Autumn Conference taking place on 18 October from 9am – 2pm here.

You may also be interested in the PARC Autumn workshop the following day on 19th October from 4.30-7pm: available here.

Sharing Participatory Autism Research in the East Midlands – online event 13th October 2021 10-12 BST

Events

About this event

The Lincolnshire Open Research and Innovation Centre at Bishop Grosseteste University are pleased to collaborate with the Participatory Autism Research Collective for a second online research symposium.

Participatory autism research is defined as research where members of the autistic community have control over the research agenda and the analysis of, and reflection on, the data that is generated. It embeds the values of the draft framework for inclusive autism research (Chown et al., 2017), including that autism research should be aimed at improving the lives of autistic people.

Each participant in the symposium is a member of the BGU community and will introduce an element of their current research and which will then be discussed by the group. Comment by audience members will not be supported during the presentations, however there will be an opportunity for delegates to discuss the event in groups afterwards.

Presentations:

Autistic women and university – Sophie, a BGU alumnus.This participatory PhD research focuses on autistic women’s experiences of university, with specific regard to wellbeing. Participants expressed barriers to university and wanted universities to be more inclusive. As part of this project participants created creative pieces such as poems or artwork. Sophie is particularly interested in the use of creative methods as a research tool.

Using the short film ‘Broken’ to explore autism in the classroom – John, a member of BGU academic staff (the film’s co-creator, ‘Fauxparl’, is a BGU alumnus).The short film Broken (Rimmer, 2020) is an artistic impression that aims to articulate autistic pupil dysfluency from an autistic viewpoint. The film has been used a tool to support trainee teachers’ understanding of fluency issues in autistic pupils in the mainstream classroom. The film (6 minutes) will be shown as part of the presentation.

Representation of Black autistic characters in picture books – Clare, a BGU associate, is undertaking a PhD in children’s literature at Cambridge University. She is supporting three members of BGU’s academic staff with this project.In 1990, Dr. Rudine Sims Bishop published an essay outlining the importance of children’s books as both ‘windows’ and ‘mirrors’: books that are windows enable children to learn about the lives of others, and those that are mirrors support children to see themselves reflected. This project looks at the representation of Black autistic children in picture books – a hugely under-represented demographic. It critiques this representation both from a Black and from an autistic perspective and investigates how these books work both as windows and mirrors.

Bishop Grosseteste University’s ARCH project – Helen, BGU’s Student Engagement Facilitator.BGU has this year started an Autism Resources and Community Hub (ARCH), which aspires to be a one-stop starting point for all members of the BGU autism community (autistic students and staff, family members, friends and allies) to access information about autism at BGU. This community-based, exploratory work aims to build a positive resource that emerges from our autistic community. The initial pages can be found here: https://www.bishopg.ac.uk/about-bgu/what-we-do/autism-resources-and-community-hub-arch

This event will be hosted using Microsoft Teams, as as such the email addresses of attendees may be visible during and after this event. By registering for this event you are agreeing to these terms.

To register for the event click on the following link: https://www.eventbrite.co.uk/e/participatory-autism-research-symposium-tickets-163373401241

Online Participatory Autism Research Collective event: Understanding PDA 20th July 2021

Events

Workshop on Pathological Demand Avoidance (PDA), organised by the Autism Research Team at the University of Nottingham.

About this event:

The Autism Research Team at the University of Nottingham are organising a workshop on Pathological Demand Avoidance (PDA) in collaboration with PARC (Participatory Autism Research Collective) members Damian Milton and Richard Woods. 

About this event

Pathological Demand Avoidance (PDA) has been an elusive term and still remains poorly theorised and understood. While some argue PDA may be a sub-type of autism or even a distinct condition in itself, others view PDA as neither of these and contend that it may be a varied phenomenon. The goal of this workshop is to facilitate discussion on PDA to elucidate a deeper understanding of the key issues surrounding this topic. 

The aims of the workshop will be to:

  • Bring together clinicians, academics, and autistic individuals either working in the field of Pathological Demand Avoidance (PDA) or with an interest in this area.
  • Facilitate discussion about the relationship between PDA, Autism and Anxiety.
  • Develop ideas for new collaborative research projects or professional partnerships.

Invited speakers include:

  • Richard Woods (Autistic scholar-activist)
  • Damian Milton (Chair of PARC; Autistic scholar-activist; Lecturer at University of Kent).
  • Keith Howie (Consultant Educational Psychologist) and Pat Smith.
  • Jonathan Green (Clinical Consultant on PDA, University of Manchester)
  • Harry Thompson (Advocate for PDA and neurodiversity)

Small group discussions will follow the presentations.

Register here: Online Participatory Research Collective: Understanding PDA Registration, Tue 20 Jul 2021 at 10:00 | Eventbrite

Autism Journal Club – Laura Crane and Caroline Hearst 19/07/21

Events

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Laura Crane and Caroline Hearst will be presenting their recent paper:
 
‘Supporting Newly Identified or Diagnosed Autistic Adults: An Initial Evaluation of an Autistic-Led Programme’
https://link.springer.com/article/10.1007/s10803-020-04486-4
 
Following a short presentation, there will be an opportunity for discussion, including:
 
Is peer support useful for all autistic people?
 
This is a small scale programme for a small group of people in one area of England – how do we scale this up so that more autistic people could benefit?
 
19th July 2021 at 16.00-17.00 (UK time)
Online via Zoom
 
The session will be video-recorded and uploaded on the Tizard Centre YouTube channel. To register please go to:
https://us02web.zoom.us/…/reg…/WN_A9-bE3LZTb-ld5CPVePGew

Recordings of Critical Autism Studies Conference 07/06/21 and Autism Journal Club 14/06/21 now available

Events

Recordings from the recent critical autism studies conference held on 07/06/21 and Autism Journal Club 14/06/21 with Amy Pearson and Kieran Rose are now available:

PARC Critical Autism Studies Conference 2021 – YouTube

(6) Tizard Autism Journal Club – ‘A Conceptual Analysis of Autistic Masking’ – YouTube