Making relationships visible in autism support services

Joe Long, Research and Policy Lead and Joanna Panese, Practice and Community Development Lead, Scottish Autism

Historically, social care and education services have been informed by a deficit-based view of autism that has often seen support focused on ‘social functioning’ or ‘social skills’ development, usually informed by normative models of social interaction. In this presentation, we consider what a focus on positive social relationships looks like in autism support services.

Scottish Autism’s practice research on friendships and sociality in services revealed the importance of the relationships between supported autistic people and the social care practitioners that work alongside them. Yet these relationships are often occluded in research and practice literature. This has led us to consider the relational aspects of support in our research programme and increasingly in our models of support provision. We consider that positive relationships occur when services are able to support autistic preferences for communication, interaction and sociality, rather than push normative models of social skills.

In this talk we will make the case for the visibility of relationships in practice discourse, introduce Scottish Autism’s current research on this topic, and advocate for a more relational understanding of practice in public policy. We will consider what positive support relationships look like in our own services, and the way these can be nurtured and recognised through reflective practice and practitioner learning opportunities.

Reflections from research on relationships... flourishing lives and so much more

Sara Ryan, Professor of Social Care, Manchester Metropolitan University

Here I reflect on recent NIHR funded research projects 'Flourishing Lives' and 'Growing Older, Planning Ahead' which involved people with learning disabilities, autistic people and family carers as research partners and researchers. I draw on Amartya Sen's Capability Approach and Martha Nussbaum's list of 10 basic capabilities to think about how we can live good lives and what can be done to improve current practice.

Siblings Matter: How professionals can support young siblings

Georgia Pavlopoulou, Associate Professor University College London Brain Sciences, Founder and Director of Group for Research in Relationships and Neurodiversity (GRRAND) and Director National Autism Trainer Programme

Sibling relationships have the unique potential to be the longest-enduring bond, with the potential to create shared experiences that last throughout the life course. It plays a central role in family life and is the first and most intense peer relationship that humans may experience and serves as the child's first social network. Although sibling relationships are an important context for development, they are still often ignored in research and proactive support schemes of autistic family members. By engaging in research, educational and clinical practice 'with' siblings, rather than doing research 'on' or 'about' siblings, we can learn more about family mental health and neurodiversity affirmative ways of support across the lifespan.

In this talk, I will give examples of recent research looking at what we may learn from siblings' experiences, moving away from a medicalised deficit narrative in families caring for one or more autistic people. The talk may be useful to health and education professionals supporting autistic and non-autistic siblings to live happier and healthier lives.

“A certain magic”: Autistic adults’ experiences of other autistic people, a systematic literature review.

George Watts, Autistic self-advocate and PhD researcher, University of Stirling

This talk will share ongoing doctoral research on how autistic adults experience contact with other autistic people and the impact this contact has on wellbeing. In contrast to deficit-based perceptions of autistic social-communication, Damian Milton’s Double Empathy Problem suggests that social-communication difficulties result from a mismatch of social-communication styles between autistic and non-autistic people. Building on these ideas, recent research suggests that autistic people often experience better communication and rapport with other autistic people in comparison to with non-autistic people. Little is known about autistic people’s own perceptions of contact with other autistic people, therefore this review looked for qualitative research where autistic people had described these experiences. This talk will describe the analysis of 52 research papers and the insights they provide into what happens when autistic people spend time together. It will explore the resonance of shared experiences, autistic culture and communication styles and the impact connections with other autistic people have on wellbeing. It will discuss the practicalities which facilitate access to other autistic people and the role of attitudinal factors such as stigma. Reflecting on what is currently known within the research literature and what we have yet to discover about this phenomenon, we will consider the implications of these findings for research and practice.

This talk will describe the analysis of 52 research papers and the insights they provide into what happens when autistic people spend time together.It will explore the resonance of shared experiences, autistic culture and communication styles and the impact connections with other autistic people have on wellbeing.It will discuss the practicalities which facilitate access to other autistic people and the role of attitudinal factors such as stigma.Reflecting on what is currently known within the research literature and what we have yet to discover about this phenomenon, we will consider the implications of these findings for research and practice.

Autistic perspectives on autistic social communication

Holly E.A. Sutherland, MPhil, Doctoral Candidate, University of Edinburgh

“Persistent difficulties with social communication and social interaction” is one of the diagnostic criteria for autism. However, increasingly, both research and self-advocacy are challenging this framing. The neurodiversity paradigm and the double empathy problem are two powerful new frameworks for understanding autistic social communication, suggesting that difficulties are not just due to the autistic person, but due to mutual misunderstanding between autistic and non-autistic people. To understand why these misunderstandings occur, we have to first understand how autistic people experience social communication – what their expectations are, what they find difficult, and what they wish non-autistic people would do. In this talk, Holly Sutherland will cover some key concepts from two focus groups that asked autistic adults these very questions, and how these can be used to improve communication with autistic people.

Confronting interpersonal violence against autistic people

Amy Pearson, Senior Lecturer in Psychology and Kieran Rose, Consultant Trainer, The Autistic Advocate

Autistic people experience violence and abuse at an alarming rate, and to date there has been very little consideration of how to a) prevent this, and b) support those who have felt its impact. Historical discussions have framed violence towards autistic people as a personal failing to spot manipulative behaviour, driven by a lack of social understanding and individual vulnerability.

In this talk we will present findings from multiple studies that I have conducted in collaboration with other autistic academics and community partners. Across this body of research, we asked autistic people themselves about how they perceive and make sense of the experience of violence, and what we can better do to support them.

The aim of this research was to transcend the notion of ‘individual vulnerability’ and resituate heightened risk and negative outcomes within an ecological framework which acknowledges the wider role that stigma and ableism have to play in the outcomes of autistic people. I will reflect on my position as an autistic researcher working in an area for which I have lived experience and talk about how we can take action across multiple levels to provide more effective support for autistic people who have been victimised, and importantly, create a better society for autistic people to prevent these experiences in future.

How to support those born without autism

Joe Wells, Writer, Comedian, Podcaster

Autistic writer and comedian Joe Wells will present a short comedy speech about how to support those born without autism.