Bonus ITAKOM Blog
The inaugural It Takes All Kinds of Minds (ITAKOM) conference was held in Edinburgh in mid March 2023. Here, I will consider a few of the presentations
Attracting around a thousand international participants at the venue and via virtual technology, the two days encompassed around 50 main talks and close to 100 smaller ‘poster’ presentations. Aimed at transforming understanding of autism and other neurodiversities such as ADHD, the conference brought together some of the ‘rising stars’ of this field of research, and in my view has made an important contribution to improving neurodivergent lives.
Processes in Denial of Care, by Bo Hejlskov Elvén, Clinical Psychologist and part of the Studio III low arousal team.
Focusing on staff attitudes, Bo examines how and why staff teams make their decisions in disability/neurodivergent care settings. Do they support autonomy, or expect obedience? Teams may choose to blame the person they are caring for. Or, they can reflect on their own set of decisions and actions that may have led to that person becoming distressed. The more they focus on the alleged fault being within the person they care for, the less they learn about what’s actually causing the situation. If the solution is not obvious, care teams may try to place the blame on the family instead. Or, perhaps, on their own bosses. The right to care is too often earned by good behaviour, which is believed to be a simple choice by the person. Distress behaviours are often ways to process anxiety from the chaos from teams responding in their own seemingly chaotic ways, insisting on an obedience that the person cannot deliver. Teams that learn a new way of understanding why distress happens also learn new ways of empathising, and improved ways of supporting individuals. Bo provides substantial research evidence to support this approach, and his work & that of Studio III generally are worth deep consideration.
Reacting, Retreating, Regulating and Reconnecting
Florence Neville, University of West of England, presented an academic poster on research into use of quiet spaces for autistic adults. The participants explained that they sought out such spaces as a reaction to the pressures of social masking, and as a way to get away from sensory and social overload. They would use the space and time to regulate via favourite hobbies such as those involving deep interests or fictional worlds. This enabled them to recover and ‘recharge’ their energy levels, ready to reconnect with small groups and with others who are neurodivergent. This type of ‘downtime’ is vital to autistic thriving, and needs to be better understood & provided.
Being able to fulfill oneself or live one's interests: The impact on the quality of life of autistic adults.
The team led by Vicky Caron at the University of Quebec reported on their new research looking at autistic intense interests and the link to better quality of life. 226 participants took part in their survey, reporting that their quality of life was better if they had time to spend on their deep interests, and especially if they could find someone to share that with. This is vital research, given that the historic belief was that autistic deep interests were unhelpful or even harmful.
Neurodiversity & Employment: Where we've been & where we're going
Dr Nancy Doyle presented some pioneering research looking at how workplaces can better understand and benefit from neurodivergent employees. Of particular interest, the recommendations that companies think hard about creating specialist roles, rather than assuming that e.g. autistic individuals should have broad general skills. Wellbeing measures also need adapting to include e.g. checks for avoiding social or sensory overload.
Communicating Distress: A qualitative study considering the language autistic adults use to describe their mental health needs.
Adelaide Beckwith, University of Portsmouth, presented the recent research into this important topic. The study participants reported that they often had difficulties using spoken language to explain how they were feeling. It was common to use gestures, body language and face expressions to show distress, but do so in typically autistic ways that nonautistic healthcare professionals may find difficult to interpret. There is a clear need for training on how to interpret autistic non-speaking communications, so that teams do not miss these. Trusted family members or others closest to the person have a role in advocating alongside them at their request, to interpret and explain where needed. Adelaide also notes how important it was to co-produce solutions with the autistic person.
How do autistic adults describe their interactions with other autistic people? A systematic review. (Team members from the Universities of Stirling & Edinburgh, & Scottish Autism)
George Watts, Catherine Crompton, Monique Botha and other team members are working on this significant aspect of autistic lives and wellbeing. Their early findings show that autistic people desire connection with other autistic people, but find it a struggle to locate venues where they can meet without sensory overwhelm. Where they found good places to share friendships with others, this adds to quality of life. The research is ongoing, but pointing strongly to the need to consider the environment around autistic people, rather than just focusing on whether they can meet with one another. When working well, there is mutuality of understanding, with sharing of experiences and meaningful communication. Given the poor quality of life experienced by so many autistic people, it will be good to see the final results of this work.
Medicine Needs All Kinds of Minds: Autistic Doctors are changing culture in healthcare towards a neurodiversity-affirmative approach.
Dr Mary Docherty presented a summary of the team’s recent membership survey for Autistic Doctors International, which gathered 225 responses, most currently working as doctors. Open disclosure of being autistic is rare at present, with the network pioneering better ways to think about, and talk about, autistic people In particular, the study noted the link between considering autism to be a disorder, and attempting suicide. This points clearly to a need to reframe the narratives around autism. The study results also revealed that few of the autistic doctors recognised themselves from the autism training they had received, perhaps reflecting the ‘deficit and disorder’ narratives common in some of the older training programmes across the world. One participant noted that they felt very disrespected by healthcare professionals, as an autistic doctor. The team note the importance of the role of autistic doctors in understanding autistic communication, and in achieving better outcomes for autistic patients. There are a number of projects ongoing, and I look forward to seeing the results from these.
ITAKOM is hosted by Salvesen Mindroom Centre, Professor Sue Fletcher-Watson is the Director.
