May is Mental Health Awareness Month. We dedicate this issue to epistemic justice, something sorely missing in the treatment of neurodivergent and disabled people’s mental health. Negative stereotypes stifle voices and useful tools. Lack of epistemic justice proliferates harm.
- Neurodiversity, epistemic injustice, and the good human life
- Epistemic justice is an essential component of good psychiatric care
- Academic, Activist, or Advocate? Angry, Entangled, and Emerging: A Critical Reflection on Autism Knowledge Production
- Challenging Behaviour: The weaponisation of Autistic existence
- Intergenerational trauma and the perpetuation of harm
- Abled Arrogance, Not Hearing Fragility
- On Being an Autistic Autism Researcher
- Pursuing choice, not truth: debates around diagnosis in mental health by Akiko Hart
- Negotiating the Neurodiversity Concept
- Thoughts on the root of the double empathy problem
- Towards Reproducible and Respectful Autism Research: Combining Open and Participatory Autism Research Practices
Neurodiversity, epistemic injustice, and the good human life
Much work on epistemic injustice has identified the operation of negative stereotypes relating to gender and race; for instance, when someone’s testimony is dismissed, doubted, or accorded low credibility due to racist or sexist prejudices on the part of the listener (Dotson, 2011; Fricker, 2007; Kidd et al., 2017; Medina, 2013). But in recent years research has drawn attention to epistemic injustice in healthcare generally, and more specifically within psychiatry, pediatrics, and among people with disabilities (Blease et al., 2016; Carel & Kidd, 2014; Crichton et al., 2016; Kidd & Carel, 2016, 2019; Potter, 2015). What has been revealed is the systematic stifling of the voices and interpretive tools available to both ill and disabled persons: in particular, their information providing, testimonies, and interpretations. These types of epistemic injustice have been associated with the medical deficit model that dominates much of medical and psychiatric discourse (Kidd & Carel, 2018, 2019). Moreover, physically disabled persons’ claims that they are happy and living good lives have also been dismissed due to prejudices about the possibility of living well whilst disabled (Blease et al., 2016; Carel, 2016, ch. 6).Neurodiversity, epistemic injustice, and the good human life – Chapman – 2022 – Journal of Social Philosophy – Wiley Online Library
We’ve suggested that autistic individuals encounter testimonial injustice, when they claim to be happy or living good lives, and hermeneutical injustice, seen in the exclusion of neurodivergent modes of flourishing. But it is also vital to consider how these forms of injustice combine and interlock in practice. In day-to-day life, prejudiced stereotypes regarding autistic flourishing and wellbeing culminate in autistic individuals encountering a “catch-22”-like framing, whereby the possibility of being both autistic and living a good life is, to varying extents, unthinkable for many.Neurodiversity, epistemic injustice, and the good human life – Chapman – 2022 – Journal of Social Philosophy – Wiley Online Library
Epistemic justice is an essential component of good psychiatric care
The central message I wish to convey is that the epistemic justice is an essential component of good psychiatric practice and there is no reason for the attitude of psychiatrists toward this framework to be one of antagonism. Medicine and psychiatry, practiced virtuously, are on the side of epistemic justice.
Epistemic justice is not something that is outside of good clinical care. Good clinical care is inclusive of our best ethical practices; just as good clinical care cannot be racist or sexist, good clinical care cannot be epistemically unjust. We cannot appeal to good clinical care to justify ignoring epistemic justice because epistemic justice clarifies a vital aspect of what good clinical care ought to be.Epistemic justice is an essential component of good psychiatric care | Psychological Medicine | Cambridge Core
Academic, Activist, or Advocate? Angry, Entangled, and Emerging: A Critical Reflection on Autism Knowledge Production
It is not hard to see the potential utility for the minority stress model when you pause and take stock of how autistic people are treated in society. The minority stress model captures the some of the complexity of existing while autistic. Autistic people are stereotyped—and the vast majority of stereotypes are negative (Wood and Freeth, 2016). Autistic people face employment discrimination, higher unemployment, and underemployment, as well as experiencing bullying in the workplace (Shattuck et al., 2012; Baldwin et al., 2014). Autistic children are more likely to be excluded from schools (Timpson and Great Britain, 2019). In the United Kingdom (UK), one-third of autistic people have access to neither employment or welfare payments (Redman, 2009), while 12% of Welsh autistic adults report experiencing homelessness (Evans, 2011). Statistics show disproportionate use of force against autistic people and those with learning disability in the UK (Home Office, 2018), while a third to half of all incidents involving the use of excessive force by police involves a disabled person (Perry and Carter-Long, 2016)—experiences which will obviously be further compounded by institutional racism (Holroyd, 2015). Autistic individuals are more likely to experience (poly)victimization, including being four times more likely to experience physical and psychological abuse from adults as children, 27 times more likely to experience teasing, and seven times more likely to experience sexual victimization (Weiss and Fardella, 2018). At the extreme end of the victimization—autistic children are more likely to die to filicide (Lucardie, 2005). Autistic lives are marked by an often-astounding excess stress burden across the life span.
Considering the study by Hirvikoski et al. (2016), I chose to study mental health and minority stress because people like me were (and still are) dying to suicide in their droves. To be clear, wanting a better future for my community is a value, and my work embodied it from the very beginning. I was propelled by values. How can you belong to a community who is actively suffering, and not want to make it better anyway that you can?Frontiers | Academic, Activist, or Advocate? Angry, Entangled, and Emerging: A Critical Reflection on Autism Knowledge Production
Epistemic injustice pervades autism research in a way that only ever marginalizes autistic people in knowledge creation while providing an almost all-encompassing blanket of protection for non-autistic researchers—non-autistic people have an assumed objectivity that means they do not have to defend their involvement in the creation of knowledge.Frontiers | Academic, Activist, or Advocate? Angry, Entangled, and Emerging: A Critical Reflection on Autism Knowledge Production
I lean into my emotions because they inform my values, keep me tied to the autistic community, generate my sense of epistemic responsibility to the community I come from. I am open because when autistic students (whether undergraduate or postgraduate) approach me to ask how I handle the experience of feeling and living these accounts, they express a loneliness that silence only serves. I now have a policy of honesty and I tell them: I feel angry.Frontiers | Academic, Activist, or Advocate? Angry, Entangled, and Emerging: A Critical Reflection on Autism Knowledge Production
Frontiers | Academic, Activist, or Advocate? Angry, Entangled, and Emerging: A Critical Reflection on Autism Knowledge Production
Challenging Behaviour: The weaponisation of Autistic existence
Challenging behaviour. It’s a term we have likely all heard. It projects images of violent children, unruly and disruptive to the children who behave in the way expected of them. However, this particular term has been used to frame Autistic experience as an abberation of human expression and justified the use of abusive interventions and use of restrictive practice.
When we consider scales that measure challenging behaviour, you might be surprised to learn that many of the behaviours they target are normal Autistic behaviours. It seems as though merely existing in a way natural to ourselves has been positioned as challenging in its own right. They’re not entirely wrong, of course; Autistic culture is a counterculture, one that stands in opposition to the multi-million dollar behaviour industry that exploits the fear of vulnerable parents.Challenging Behaviour: The weaponisation of Autistic existence – Emergent Divergence
Intergenerational trauma and the perpetuation of harm
There is a greater complexity to this matter than simply the way our parents and other family members treat us. Services and professionals who are meant to support us often compound the pain we are experiencing. When one is more concerned with the law than with ethics, you are almost definitely contributing to pain.
So, now we have a world where harm comes from all directions. This harm is so consistent and resilient to change that we do not realise its lack of acceptability. We are constructed into adults who believe that things should remain the same because “we turned out fine”.
It’s not okay.
We deserve a world where our fundamental human rights are not trampled daily, and more so, our children deserve the opportunity to construct themselves in love and not the crucible of pain.Intergenerational trauma and the perpetuation of harm – Emergent Divergence
Abled Arrogance, Not Hearing Fragility
This arrogance is fueled by benevolence porn.Abled Arrogance, Not Hearing Fragility | by Not An Angry Deaf Person | Medium
On Being an Autistic Autism Researcher
For me involvement in Autism research is a form of activism. It can be a hazardous enterprise, given how many toxic studies are being done on (not by, with, or for) Autistic people. Whenever I research a new topic, I have to review the literature, which takes me into some murky territory. What some non-autistic researchers say about us can be incredibly damaging. Perhaps they assume we’re not part of their audience, or maybe they don’t care what impact their words have. When I was seven years old, I read a book about a child who was granted a wish. She wanted to know what other people thought of her. As soon as she found out she tried to reverse her wish, but she couldn’t. It is difficult to unknow the damaging things we read about ourselves as Autistic people, without feeling diminished by them. We have to expose ourselves to some toxic research in order to appraise it, and it’s difficult not to be overwhelmed and upset by misinformation.
A substantial proportion of Autism research is quite shoddy. Instead of properly investigating the ways in which autistic people experience the world, some non-autistic researchers simply impose their own frameworks and interpretations. All too often poorly produced research findings go unchallenged and get cemented into the mythology surrounding Autism and Autistic people. Our intolerance of inaccuracy, dishonesty, and dissembling can make this particularly painful. The misattribution of negative characteristics stigmatises us and undermines our identity by portraying us as flawed and ‘other’. Co-production should be standard if Autistic-led research isn’t possible and Autistic people should always be involved in setting the research agenda, and contributing to everything that follows.On Being an Autistic Autism Researcher
Pursuing choice, not truth: debates around diagnosis in mental health by Akiko Hart
However, my main concern is how we’re framing the debate around diagnosis in scientific terms. I deeply respect all of those who have put forward cogent and compelling arguments as to the scientific invalidity of diagnosis. But I’m worried that the logical consequence of this might be that we find ourselves only advancing alternative models to understanding distress and madness which are evidence based. But if we argue that we can only understand distress through a scientific model, albeit a more rigorous one than diagnosis, what does this mean for those who don’t make sense of their experiences in this way? What happens to those who find spiritual meaning in madness? How can we hear and hold the stories of those who have radically different beliefs to ours, which defy current scientific thinking? I worry that stories about aliens, conspiracies and persecution might get re-worded and reframed, just like they have been by psychiatry.
The issue for me is not which story is true – because in a way they can all be true for us individually, and none of them are true for everyone. It feels urgent and important for me to rethink how we argue about diagnosis, to be aware of the consequences of framing the conversation in scientific terms, to explore what we mean by truth and to reflect on how epistemic injustice can be perpetuated.
Choice, not truth
But these arguments do not (just) take place in lecture theatres. They are about people’s lives. What really matters to me is practice.Pursuing choice, not truth: debates around diagnosis in mental health by Akiko Hart – Asylum Magazine
Negotiating the Neurodiversity Concept
In line with Hart’s worries regarding contemporary critical psychiatry, I am similarly concerned to construct the neurodiversity paradigm in a way that avoids the imposition of a single story. Thus for me, once we recognise that the boundaries of health are intimately intertwined with and reflect oppressive power structures, as Meadows rightly notes, we should still not jump to rejecting the very possibility of mental pathology, or of a “wrong” brain, as they conclude. Rather, we must work on allowing more space for individuals and groups to self-define as healthy or ill, different or disordered, perfect or broken, in need of either medical or political intervention, or whatever combination of these.
For me, escaping the trap of the single story requires centering the voices of neurodivergent and Mad people in the continued critique, construction, and reconstruction of the boundaries of health. It requires recognising that these boundaries never are or could be finished; they are always in flux and may differ from person to person. It also requires recognising that they can only be negotiated by deliberative, messy, and complex democratic processes. And it equally requires attempting to boobytrap our deliberative processes so that they neither reflect existing inequalities in our power structures, nor challenge them only to impose a new single story.Negotiating the Neurodiversity Concept | Psychology Today United Kingdom
Thoughts on the root of the double empathy problem
So now we live in a world that not only controls our behaviour and thoughts, but also places conditions on the ways we communicate. The power is removed from the Autistic person through the weapons of normativity that position themselves on a sort of essentialism that implies communication exist as “correct” or “incorrect”.
This is the root of the double empathy in our capitalist society.
Allowing Autistic people to freely communicate gives them the power to potentially undermine those in power. So instead we are positioned as lacking in trustworthy communication. What better way exists of silencing dissenters than to remove the proverbial tongues?
So, the double empathy problem pervades deeper than a lack of cultural competency. It represents the disempowerment of entire groups of people on the basis of normative standards of language. Through the double empathy problem we are able to clearly witness the removal of free communication and the diversity of forms in which it takes.Thoughts on the root of the double empathy problem
Towards Reproducible and Respectful Autism Research: Combining Open and Participatory Autism Research Practices
How do we do better? How do we recognize minority stress and power inequalities, reframe challenging behavior, shed our arrogance, cross the double empathy gap, and reach epistemic justice? By combining open and participatory research practices.
Concerns have also been raised about the quality and rigour of autism research. For example, researchers have highlighted key omissions in the reporting of research, such as failures to declare conflicts of interest (Bottema-Beutel & Crowley, 2021) or the presence of adverse events (Bottema-Beutel et al., 2021). Concerns have also extended to the low standards underlying evidence-based practice (Bottema-Beutel, 2023) as well as replication failures (Gernsbacher & Yergeau, 2019). As Dawson and Fletcher-Watson (2021, p.1) note, the standards of research quality and ethics have not been applied to autism research to the extent that they should, which has “profoundly impacted how autistics are regarded and treated”.
Two potential solutions have been proposed in relation to these aforementioned issues. The first solution regards greater involvement of the autistic and broader autism communities in research: in identifying research priorities, in deciding the design and conduct of research, in analysing and interpreting research findings, and in disseminating research more broadly (e.g., Pellicano et al., 2014). In essence, this solution involves shifting the traditional power balance in research from autism researchers to the autistic and broader autism communities. Participatory approaches such as these are thought to lead to better quality research that is more easily translated into practice (Balazs & Morello-Frosch, 2013; Forsythe et al., 2019).
The second solution regards greater openness and transparency in the reporting of research (Hobson, Poole, Pearson & Fletcher-Watson, 2022). Open research is an umbrella term for several practices, underpinned by a desire for the products and processes of research to be accessible to those outside of the original research team (Munafo et al., 2017). Open scientific practices are closely aligned with efforts to improve research reproducibility, and reduce the risk of grey research practices, such as hypothesising after results are known (HARKing; Kerr, 1998), and over-analysing data (“p-hacking”; Simmons et al., 2011).
In this paper, we discuss how combining participatory and open research practices may go some way toward addressing key issues inherent within autism research. First, we define both open research and participatory research. Then, we outline three key principles for autism researchers striving to make their work more open and participatory: (1) the need for adequate expertise and infrastructure to facilitate high quality research, (2) the need for a greater degree of accessibility at all stages of the research process, and (3) the need to foster trusting relationships between the autistic and research communities. Throughout this paper, we draw on examples from literature both within and outside the autism research field, and we conclude with reflections on how this may foster an autism research culture that better serves the autistic and broader autism communities.PsyArXiv Preprints | Towards Reproducible and Respectful Autism Research: Combining Open and Participatory Autism Research Practices