In early July, I once again took the long train journey to Durham, to spend time with other academics at a workshop based on the Durham Faculty of Arts and Humanities-funded Gender, Affective Injustice and Autism (GAIA) project, which has focused specifically on autistic women and their experiences of late diagnoses.

This project workshop asked how social and medical norms, and the construction of social, technological, and research environments, impact Autistic people’s affective experiences, sense of self, and authenticity. Speakers covered a broad range of topics related to these key themes, which I will reflect on in this blog.

What is epistemic and Affective injustice?

Epistemic injustice is the denial of the opportunity for marginalised individuals and communities to create knowledge and meaning from their experiences. It is based on who is believed and who is worthy of belief regarding their understanding and experiences of the world.

Epistemic injustice reinforces a power dynamic in which some groups and individuals are seen as more knowledgeable about an experience, culture, or identity, even without lived experience.

It creates questions like: who is palatable? What works within the systems that currently exist? Who will be easy enough to ignore or ‘support’ under systems of capitalism, imperialism, white supremacy and the patriarchy?

Stimpunks have a great glossary page for Epistemic Injustice here.

Affective injustice concerns the politics of feeling and suggests a framework for normative emotions and emotional expression. It concerns how our emotional experiences and interactions are socially created and contested. It also considers how these emotional processes create, and sometimes disrupt, normative ideas of apathy and dismissal (see Gallegos, 2023, for more).

Impression Management in Socially Anxious Young People: A Phenomenological Investigation across Gender 

Lucienne Spencer is a Postdoctoral Researcher in Mental Health Ethics.  Lucienne’s talk shared some of the findings from the Wellcome Trust-funded ‘Social Emotions’ project, which aims to understand the experience of ‘impression management’ in socially anxious young people.

Lucienne shared findings comparing gendered experiences of impression management among socially anxious young people across the core themes of intersubjectivity, affectivity, agency, and sense of the authentic self.   

Impression Management was broadly framed as closely monitoring and adapting one’s behaviour to cope with anxiety-inducing social situations. This included rehearsing sentences and planning discussion topics in advance of a conversation, carefully controlling facial expressions and gestures, and censoring what one says.   

What the participants shared was fascinating. One participant said that “The mask falls down on to me” when socialising with others; this gave me the image of a theatre mask falling onto someone out of nowhere and challenged my imaginings of a mask being ‘put on’.

I also loved the idea of un/masking being a way of “Giving pieces of your pie away” to others. Not everyone will get all the pieces of the pie that make up a person, but they may get one or two slices. This talk was really evocative and challenged the ways I have been imagining Autistic masking over the past few years (you can read more on Autistic Masking here).

Imagining Transgender Autistic Participatory Action Research 

I presented the next talk as a researcher who is curious about the power of cisgenderism, trans-medicalism, and neuro-normativity under late-stage capitalism. My presentation was a reflection on the methodological approaches used in my PhD study, which explores the health and social care experiences of transgender and gender-diverse autistic adults living in the UK.

I discussed the issues of epistemic injustice and how this affects research, policy and societal understandings of trans and gender diverse Autistic people and our lived experiences. I presented an understanding of the current use of participatory action research (PAR) with transgender and gender diverse Autistic adults, arguing that such research must be grounded in lived experience to create appropriate, meaningful , and constructive outcomes and to improve epistemic justice.

Epistemic Injustice and the pathology paradigm are inherently connected because they both impose a single ‘truth’ onto us: that our differences are a result of something wrong with us. Under the pathology paradigm, Autistic people are described as unusual, restrictive, having difficulties, deficits, and being a failure, abnormal, and lacking. Can people described like this make their own knowledge? (Words lovingly gifted by the DSM 5 TR, 2022  – sarcasm, always).

Centring epistemic injustice also allowed me to reflect on using PAR with trans and gender diverse Autistic adults, as a trans Autistic researcher. Including the consistent need to justify my positionality, my neurodivergent emotionality and my concerns with safety and slipping into perfectionism. As well as constantly questioning whether academia is the right place for this work.

My talk was well-received, and I connected with another autistic researcher, Chloe Huang, who is using PAR approaches to explore the experiences and conceptualisations of friendship among autistic adults, with a particular focus on older adults (aged 45+).

“Life is masking, masking is life”: autism, AI, and authenticity 

Joel Krueger is a philosopher at the University of Exeter. His current work focuses on philosophical issues raised by autism, as well the ways some Autistic people use AI companions for social and emotional purposes: to love, grieve, and cope with loneliness.

Recent work on AI and autism has been largely critical. It shows how emerging proposals rely on a “deficit model” of autism, such as AI-powered smart glasses designed to “fix” alleged empathy deficits. This use of AI is both ableist and stigmatising, and perpetuates neurotypical biases and excludes Autistic voices from the relevant discussions. Joel asked, “Is there a more empowering role that AI may play in the lives of some autistic people?”

Joel considered how Autistic people use AI chatbots for companionship and connection, and the distinctive benefits and harms that may follow from this use, particularly regarding authenticity. Drawing on first-person reports and debates about the extended mind and extended virtues, Joel argued that while AI systems lack authenticity, they can be integrated into extended systems that help some users achieve authenticity. AI companions may prompt some Autistic people to realise authenticity-expressing traits and capacities that might not otherwise emerge. 

Joel concluded that we ought to maintain a critical perspective on the role of AI and the intentions behind Big Tech’s constant advocacy for it, whilst remain open to the potentially value-adding prospects of these digital technologies for Autistic people.

I find Generative AI to be fraught with ethical issues, most notably the environmental damage caused by data centres. Joel did cover these issues and he mentioned those who cannot easily access other social support, therapies, ways to share their feelings, or a judgement-free space to trial socialising. Ultimately, a question remains: Can and should gen AI be accessible to these people despite the devastating environmental issues?

“And that’s just about gender…I’m doing all of that, feeling like an alien in a human suit”: Exploring the lived experiences of masking in autistic women  

Amy Pearson is an Assistant Professor in Psychology and specialises in interpersonal relationships, victimisation, social identity, and stigma among neurodivergent people. They shared work created with Sophie Hoggets and Sumeer de Alwis. Sophie Hodgetts is an Assistant Professor in Psychology who focuses on our understanding of sex/gender differences and mental illnesses that are directly affected by sex/gender-related factors. Sumeera de Alwis is a Durham Psychology graduate with a keen interest in investigating and developing practical and educational support for vulnerable groups.

Amy shared that autism research is often androcentric and that the experiences of Autistic women have historically been underexplored. Their study aimed to explore the lived experience of masking among Autistic women from their own viewpoint, guided by feminist perspectives on epistemic injustice (Fricker, 2007) and standpoint theory, which emphasise social power and gendered norms as driving factors in how experiences are understood and validated. Within this work, they conducted semi-structured interviews with six late-diagnosed Autistic  women, and identified three themes:

• ‘Reconciliation of Two Identities’, 
• ‘Interplay of Masking and Individual Notions of Womanhood in Society’, 
• ‘Autism, Masking, and Interpersonal Relationships’.

Their findings highlight how gendered expectations can influence self-knowledge, shaping motivations to mask and the experience of masking. This work is very close to my own, and Amy was a delight to listen to, as usual. There is a real need to push back against gendered understanding of autism and Autistic experience, even if those are also trans inclusive (I have written about de-centring ‘the male’ autistic experience via Aucademy).

Final (?) thoughts

I have only ever been to Durham twice (the first being at a Queer Methodologies PhD school, which the other attendees and I share about here in The Polyphony). This event was less intense than those rambunctious few days, but no less valuable. It was another opportunity to challenge everything I thought I knew about Autistic authenticity (or, as one participant suggested, “Auticity”). It allowed me time and space to continue reflecting on my practice as an Autistic researcher and human being. As with many events, this one left me with more questions than answers, but that is the joy of knowledge; we never know everything, not even close.

Thank you to Kathy Paddifoot, Roslyn Malcom and the Institute of Medical Humanities for hosting me in your lovely city.