Collaborative Change Event and Outcomes - EDAC Blog Post

At EDAC we are committed to highlighting the voices of Autistic people with lived/living experience of an eating disorder. EDAC is happy to share a blog post written by one of our post-doctorate researchers, Emy Nimbley, titled "Collaborative Change Event and Outcomes". A huge thanks to Emy for their time in writing this piece based on their experience hosting a knowledge exchange event.

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"Collaborative Change Event and Outcomes"

- Emy

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On Thursday 13th June, we had the unique opportunity to bring together a range of people in the autism and eating disorder field. Thanks to funding from the Economic and Social Research Council (ESRC) Impact Acceleration grant, received by myself and Dr Fiona Duffy, we were able to run an afternoon full of activities that sought to improve the identification and support of Autistic people with an eating disorder. This final event was the third in a series of knowledge exchange workshops run in collaboration with Autism Initiatives and SupportED. The first two involved researchers from the Eating Disorder and Autism Collaborative (EDAC) and staff and service users from both organisations sharing insights into the identification (event 1) and support (event 2) of Autistic people with an eating disorder. By engaging with a wider audience for the third and final workshop, we aimed to improve communication between different sectors and stakeholders. A well acknowledged limitation of the field is that there has been a lack of communication between autism and eating disorder spheres, as well as a lack of communication between research, clinical services, third sector organisations and lived/living  experience. By bringing a range of researchers, clinicians, charities and organisations, parents and carers and those with lived/living experience, we wanted to build relationships, promote new collaborations and begin to make collective meaningful change.  

Getting ready for the event took a lot of work and organisation. It was important to us at EDAC that lived/living experience was at the heart of the event. We were able to fund five Autistic people with lived/living experience to attend the event, as well as further two funded spaces for writing a blog post about the event and for working with us after the event to make a short, animated video (hopefully to be released around September time!) It was also important to bring together a range of perspectives and to ensure that we created a safe and inclusive environment for all. Following a lot of research, we decided to host the event at the warm and welcoming Summerhall in Edinburgh, who also offered a quiet space. Thanks to funding, we were also able to fund local travel and offer an optional lunch. Another important consideration when preparing for the event was communication. A draft agenda was circulated a month before the event, and more in-depth details were circulated a week before. This included a map with directions on how to get to the venue, different travel options and details about the lunch with nearby options should they not want to have the buffet. It was also communicated that there would be a traffic light system for name badges when they arrived: should they want to chat with anyone, they were asked to write their name in green; should they want to chat during breaks but would like someone else to initiate the conversation, they were asked to write their name in orange; and should they prefer not to chat during breaks, they were asked to write their name in Red. All of this was done to ensure there was as much transparency about the event and what to expect, as well as to adjust for any communication preferences. 

On the day of the event, around 30 participants joined us at Summerhall. The first session focused on the importance of collaboration. Myself, Fiona, Iona MacTaggart from SupportED and Matthew Day from Autism Initiatives reflected on the benefits of knowledge exchange from a research, clinical and community perspective. We then asked attendees to share why they thought exchanging knowledge and experience was important. Ideas included reducing stigma, removing hierarchy, the development of new approaches underpinned by multiple perspectives and the quicker implementation of change and good practice. The second session involved splitting the room into small groups, asking attendees to discuss a strengths-based approach to change; specifically, asking them to share what has worked in their practice to improve support for Autistic people with an eating disorder. Each group then fed back to the whole group. Suggestions included person-centred and individualised care, longer and more flexible treatment timeframes, transparency and adaptations for communication preferences, advance notice of change, taking time to develop trust and a connection with the Autistic person, and, importantly, to have lived/living experience at the heart of research and support.  

Following a quick break, our guest speaker Isabelle Hutley from the National Autism Implementation Unit (NAIT) give an insightful talk about how to develop and implement autism-affirming care within services. This was an incredibly informative talk, offering a range of tools that can be quickly implemented, such as language use, sensory and communication adaptions, education on Autistic traits (e.g., masking, stimming) and prioritising predictability. We are so grateful to Isabelle for coming along as our guest speaker and her talk was very well received by attendees. Finally, to reflect on what we had discussed so far and to think about moving forwards, we ended the day by setting our priorities for future collaboration and change. We discussed the need to have more events like this one, with a more diverse range of perspectives such as GPs, teachers and social workers. We also discussed the importance of supporting community services and developing support for younger Autistic people with an eating disorder than is currently provided. Finally, the importance of collaboration between ‘on the ground’ services and academia was emphasised, sharing and generating funding for bold, collaborative research to inform improving services and support.  

It was a joy and a privilege to have such a diverse range of experience in the room for this event. It was a fantastic opportunity to meet new people and hear new perspectives, and we received very positive feedback from our attendees. This ranged from the clear communication about the event, to the environment, to the collaborative nature of the event itself. Building on this, we must make sure to continue and extended these collaborations. Over the next few months, we will co-produce a report on the event, including joint statement from ourselves, SupportED and Autism Initiatives on the benefit and impact of knowledge exchange. We will also release a short, animated video, narrated by an Autistic person with lived/living experience of an eating disorder, reflecting on the event and the importance of continued collaboration. Finally, a companion piece to this post is another blog post written by an Autistic attendee with lived/living experience of an eating disorder, which can be found here. It is hoped that ourselves and others will continue to host events like these, generating spaces for new conversations and collaborations that will promote the awareness, identification and support of Autistic people with an eating disorder across community, clinical and research contexts.  

I would like to extend a huge thank you to the ESRC IAA, who gave us the unique opportunity to host this event, encouraging new and exciting partnerships. I would also like to thank my collaborators at Autism Initiatives and SupportED, as well as Dr Fiona Duffy and the rest of the amazing EDAC team. Finally, and most importantly, I would like to thank the attendees at the event. I am truly grateful that you took the time to come along and share your experience, and I hope you got as much out of the event as I did. I hope we can continue to work together, and to open up our growing community to more people similarly committed to creating collaborative change.