Neurodiversity Challenges

post by Jenn Layton Annable (2020 cohort)

Working as an autistic autism researcher can sometimes be a lonely and distressing experience. Daily contact with academic literature that consolidates pathologising or stigmatising beliefs and constructs can be traumatising. Luckily there is a growing community of autistic autism researchers who, although widely dispersed geographically, come together through digital technology and virtual spaces to offer peer support and collaborate in academic writing and work that counter such narratives with alternatives, grounded in our self-knowledge and awareness. This digital network of neurodivergent researchers, activists and thinkers has also crystalised into the academic disciplines of neurodiversity studies and critical autism studies, containing both scholarship and activism in equal measures.

My first published peer-reviewed paper emerged from this need to counter potentially harmful, clinically situated perspectives. An autistic autism researcher acquaintance Nick Chown raised the matter of the paper Neurodevelopmental disorders and neurodiversity: definition of terms from Scotland’s National Autism Implementation Team within an autistic autism research group asking for collaborators to respond to the publication, specifically dealing with a number of flawed assertions contained the text.

These included:

    • An attempt to formalise the concept of neurodivergence within a typology in which those who are neurodivergent fall outside of societal norms and those who did not are neurotypical, when societal norms are fluid and ambiguous at the best of times.
    • The reduction of all other types of neurodivergence (such as different learning abilities and styles, tourettes or other atypical mental and neurological experiences) beyond those of autism or ADHD within the category of “other”, essentially disregarding the original principle of neurodiversity as encompassing the entirety of human experience; a very standard reductionist psychiatric/diagnostic approach to this vast diversity.
    • Crediting of the term ‘neurodiversity’ to Judy Singer (an academic who was the first to use this in scholarship), when it had in fact been used online by autistic activists up to five years previously in the early nineteen-nineties.

The collaborative writing process within a neurodivergent research group can be complex, with much consideration given to the different sensory or communication needs of each individual as well as the ongoing stress they may be experiencing at any time. Often there are occurrences that would be considered rude or inappropriate, such as abruptly leaving a meeting with no explanation, were they to occur in an equivalent neurotypical workspace. Our team of writers and advisors included those who had a range of neurodivergent differences; autism, ADHD, dyslexia and mental health challenges, so as much time went into managing these with compassion and understanding toward one another as the actual writing itself. Although conflicting needs can cause frustration and difficulty, the shared experience of stigma and ignorance from others that neurodivergent people hold together is a strong foundation to work from to overcome them.

Additionally, the neurodivergent status of several contributors is not known publically outside of our research community (individuals holding prominent or senior academic positions would still experience discrimination were they to publically disclose). Others who worked on the response are publically known as autistic clinicians who have to be seen to not be challenging their professional status quo too much. This risk is such, that meeting recordings that included such individuals were transcribed and then deleted to avoid exposure of them to harm, professionally or personally.

We worked virtually using email, and shared documents for writing, commenting and editing, together with the occasional face-to-face video call. These styles of working have of course become much more prevalent since the Covid pandemic, however, their benefits to neurodiverse writing groups extend beyond the convenience of meeting without travel.

Neurodivergent communication preferences span many media and dimensions beyond that of written language. One of our group creates TikTok content incorporating signing for the deaf ADHD/autistic community, opening up lived experiences such as these to others who might be excluded because of intersectional disabilities. There was much lively debate about the inclusion of graphically based examples of neurodiversity and how far we would be able to challenge the publication boundaries of a very traditional medical journal such as the British Journal of Psychiatry and still be considered credible. On this occasion, an alternative format such as this was deemed to be too far to be included. Our work shows how different social and communication styles implicit in neurodiverse/neurodivergent groups demonstrate the value they can add to the democratisation of academic knowledge through variable dissemination, both from within the academy to the outside and from the outside in, via the insider/outsider perspective we hold and express through our output, whatever form it takes.

Overall, the process of containing the very different perspectives and styles within even a small neurodivergent group such as ours can be a challenge in and of itself, ensuring that they are all included in enough substance whilst still creating a coherent narrative. Nick and I worked on this refinement and translation process, with the agreement and ‘member checking’ of the wider team. This is how I came to receive the second author attribution in the writing process.

The first challenge we faced was the rejection of the paper’s original format as that of analysis, instead being considered as a commentary, with a word count and citation limit of half of what we had submitted. We decided as a group to reformat the original writing, to ensure a timely response to the original article with a commitment to submitting an expanded version at a later date. Upon resubmission, we received thoughtful reviewer feedback which improved the overall quality and style of the paper. These included challenges to “better capture the nuance and undoubted controversy in the field of biomedical vs social paradigms of neurodiversity and disability” which we managed successfully, whilst remaining within the wordcount and inclusive of the many different frames of neurodivergent reference included in our authorial group.

The final submission was well received by the BJP, whose editors and reviewers thanked us for our thoughtful and considerate responses both to their comments and the original paper. Although we were disappointed to have to shorten our original writing there was a commitment between a smaller group of those who contributed to further our thinking in a later piece, alongside others who produce and curate digital content for social media to adapt what we had created to make it suitable for audiences in these different contexts. We felt that this would be the best approach overall. In coming together we were able to express and explore a range of different ways of thinking, expressing and depicting our ideas. All are valid and worthy of use, however, the delineated nature of certain specialities like academic publishing means that, unfortunately, certain ways of being and communicating are still valued above others. We hope our work, as neurodivergent academics, will champion a breaking down of these barriers of in/validation between different styles and types of communication, along with greater acceptance of neurodivergent ways of being and knowing.

If you would like to read the full response written by me, Nick Chown, Luke Beardon and Nik Howard, please click here.

 

 

 

Publishing Conference Paper – A valuable experience

post by Keerthy Kusumam (2017 cohort)

I published my conference paper, ”Unsupervised face manipulation via hallucination” in the International Conference on Pattern Recognition. The paper focused on a generative computer vision method to alter the pose and expression of a facial image in an unsupervised manner. I spent several months conducting experiments, analyzing the results, and discussing our findings. I received valuable feedback from my supervisors, which helped us to improve the quality of our work.

After the initial submission, I received comments from reviewers who provided suggestions for revisions. I took these comments into consideration and worked hard to make the necessary changes. This process was challenging as well as rewarding in the end. The paper was accepted to be presented as an oral presentation at the conference. The reception of our paper was quite positive and received several questions and comments from attendees. This was a valuable opportunity for me to network and receive feedback.

The motivation behind writing my conference paper was to explore the current state of face manipulation technology and to identify potential future directions for research in this area. As a 2nd year PhD student, I wanted to demonstrate my knowledge and understanding of the field, as well as contribute to the use of generative AI in face manipulation tasks. My main objective was to present a comprehensive overview of the current state of the field and to identify areas that could benefit from further research, especially behavioural monitoring in affective computing. In these areas, data is limited, and the use of generative AI can synthesize realistic data for further analysis.

I approached the research process by first conducting a thorough literature review to understand the current state of face manipulation technology and to identify gaps in the current research. I then used various research methods, such as conducting interviews with experts in the field and collecting data from various sources, such as academic journals, conference proceedings, and online forums. I also conducted experiments to validate some of my findings.

My key findings showed that the field of face manipulation is rapidly advancing and that there are many promising areas for future research. I discovered that there are various technical and ethical challenges that must be addressed to ensure that face manipulation technology is used responsibly. These findings impacted my original objectives by reinforcing the need for further research in this area and by highlighting the importance of responsible development and use of face manipulation technology.

I presented my research in the conference paper using a clear and concise writing style, and by using various visual aids, such as diagrams, graphs, and tables, to help illustrate my points. I also used a logical structure, with clear introductions, conclusions, and recommendations, to ensure that my ideas were easily understood by the conference audience. I also made sure to clearly state my findings and to provide context for each of the points I was making. The contributions were accompanied by experimental evidence.

One of the main challenges I faced while writing the conference paper was ensuring that my research was comprehensive and up-to-date. To overcome this, I made sure to regularly consult with my supervisors and to gather feedback from my peers. I also took the time to review relevant literature and to stay informed about the latest developments in the field.

As a result of writing the conference paper, my understanding of the topic of generative computer vision methods has deepened, and I have gained a better appreciation for the complex and rapidly evolving nature of this field. I have also gained a deeper understanding of the technical and ethical challenges that must be addressed to ensure responsible development and use of face manipulation technology.

The feedback I received from the conference audience was quite positive. Many attendees commented on the comprehensiveness of the research. Some attendees suggested areas for further research, which I have since incorporated into my future plans, especially in using this method to anonymize face datasets.

Overall, my conference paper on unsupervised face manipulation via hallucination was a valuable experience that allowed me to contribute to the field of generative computer vision and gain valuable insights into the complex nature of this field. The research process allowed me to deepen my understanding of the technical and ethical challenges that must be addressed in order to ensure responsible development and use of face manipulation technology.

Paper reflection – Articulating Soma Experiences using Trajectories

post by Feng Zhou (2017 cohort)

Somaesthetics combines the term ‘soma’ with ‘aesthetics’. The concept of ‘soma’ is predicated on the interconnectedness of mind, body, emotion and social engagement, considering all to be inseparable aspects that together form an embodied, holistic subjectivity. Aesthetics here refers to the ways in which we perceive and interact with the world around us. Somaesthetics is a widely used methodology for user study, which plays a significant role in my PhD research. Researchers who have focused on the research of Somaesthetics for many years and have published a number of prominent papers from the Royal Institute of Technology Stockholm visited the Mixed Reality Lab (MRL) of the University of Nottingham (where I am based) and collaborated with researchers here to run workshops on Somaesthetics. It was an excellent chance for me to learn Somaesthetics deeply through the workshop and explore the application of this methodology to my research.

Researchers were split into four groups to explore different applications. The group I was involved in was to explore the boundaries between humans and technology. The skin is traditionally seen as being a critical boundary of the body and one way of defining the bodily self. We can see, i.e. perceive with our eyes, our “external”, fleshy body – our moving limbs and parts, and our skin as the boundary between our “external” and “internal” body –our organs, cells, muscles etc., – which we cannot see, but instead feel or imagine. However, the boundary may be considered malleable. Take the example of a prosthesis – is this a part of our body or a separate piece of technology?

We attached cloth straps to the dancer’s calf and thigh so other members of the team could control them. Participants had to imagine a limb that had a ‘mind of its own’ – an exploration of dance where a part of one’s body was separated from control. The dance experience became one of negotiating control with one’s own body. This could serve as a conceptual stand-in for novice kinaesthetic skills where one’s body is unable to do what is asked – perhaps lacking the range of motion needed. But this was beyond being simply unable to perform the controlled limb; it actually became a separate performer in its own right, creating an intriguing partnership with a part of one’s own body, and encouraging the dancer to question the boundaries of their body and soma.

As we began to dance, our bodies behaved as we expected and we were unfettered. As our group began to take control of our limbs, we lost some agency over our bodies. The external influence started to exert itself in such a way that it restrained us, or actively pulled us. We were no longer ‘at one’ with our own bodies – rather those who controlled our limbs shared control with us. Over time as we learned how to work together, that action could even be considered a part of us (at least as far as the experience goes). It should be noted that the group members pulling on the straps were a stand-in for a ‘disobedient’ prosthesis – so the notion of it becoming part of us, or perhaps beginning as part of us, separating from us and returning might be more tightly aligned to our own body than the group experience – nevertheless the group does have access and licence to control our limbs.

This workshop was one of the user studies to support our final paper. Questioning the boundaries between humans and technology also invites reflection on the boundary between ‘inside’ and ‘outside’: separated by the skin, breathing in and out, ingesting and excreting. Thinking through these boundaries allows designers to redefine them, and thus challenge not only where the soma begins and where it ends, but also where the boundaries of experience lie. This turned out to significantly support my user workshop with disabled dancers to personalise their prostheses.

My job for the final paper was mainly to describe the activity I was involved in during the workshop. This was a precious experience to learn to write a paper collaboratively with many authors. Our final paper has 14 authors from the Royal Institute of Technology Stockholm and Mixed Reality Lab. Each of us wrote a specific part of the paper on Overleaf. We also have regular meetings to discuss writing up issues. This was also the time l started to learn Latex, which helped a lot in my left writing up on papers and thesis.