An Experience of EDAC's Knowledge Exchange Event - 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 delighted to share a blog post written by Sarah, titled "Autism and Eating Disorders Collaborative Change (EDAC): Knowledge Exchange Event". A huge thanks to Sarah for their time in writing this piece based on their experience at the knowledge exchange event hosted by our own Emy Nimbley.

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"Autism and Eating Disorders Collaborative Change (EDAC): Knowledge Exchange Event"

- Sarah

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I originally wanted to attend the EDAC event as I had taken part in their photovoice study and found that the research interests of the team aligned with my own personal life experiences as an autistic person with an eating disorder. The knowledge exchange event invited a few different professionals to discuss what collaboration looks like and what the research priorities should be moving forward. Due to a circumstance out with my control my 11-year-old son had to attend the event as well, the organisers were incredible and allowed him to come which meant that I was still able to attend. This did however increase the number of different roles I had at the event from 3 to 4, I was there from a professional aspect as I work with autistic people, a researcher’s aspect as I am a PhD student, a mother of an autistic child and finally an autistic person myself with lived experience of an eating disorder. I feel that each of these roles were important in not only my reason for attending but also the fuel behind the passion I feel with regards to the research priorities and what I would like to see in the future for all people who have an eating disorder but specifically for autistic people.  

Prior to the event I was sent an email which gave a summary of what the event was expected to be as well as the key information, date, and time. The venue for the event was still to be confirmed however I knew that it would be held in Edinburgh, which was verry important to me as it was a face-to-face event. Personally, I am extremely comfortable in Edinburgh and if the event had been held elsewhere, I would not have been able to attend unless a hybrid option was given. As an autistic person I struggle with the unknown and because of this I tend to over prepare for events which at times makes it almost impossible for me to attend things as you cannot prepare for all eventualities. The event organisers followed up once the venue was confirmed with enough notice that I was able to make sure I could attend. The week of the event I was sent a finalised order of the event as well as a map of how to get to the venue. Both were important touches as it meant that I was able to prepare for the discussions as well as plan my train journey.  

On the day other than the unplanned addition of my son, the travel went very well, and I was able to find the venue with plenty of time. The organisers were very welcoming to both of us and had some fidget toys available which my son loved! There was a lunch provided which I had known about in advance, I was able to purchase food in advance of arriving as I was not sure if the lunch would be my taste or that I would feel comfortable eating from a finger buffet. There was a system for the name badges which meant that each participant was able to decide if they were comfortable to engage in networking, if they required assistance in networking or if they preferred to avoid networking altogether. This meant that I was able to indicate that I was happy to network but that I struggle to start conversation.  

Each table was given a schedule for the event with a small description of what was going to happen at each time point. I noticed that there were two workshops which involved small group discussions, I will admit when I first saw this I panicked as I do struggle with small groups, and I also had my son with me. Luckily, the organisers had already thought of this and asked me what the best way would be to support both of us with this. We agreed that another member of staff from my organisation would sit with us as well as a researcher that knew the organiser. This meant that I was in control of who I had in my small group and that it was people I felt comfortable with. I firmly believe that this small step meant that I was able to share my views openly and that my son felt comfortable throughout the event. Each presenter had slides which in the most part was easy to read although slides with a greater amount of information were too small to read from the back of the room. It would have been good to have had the slides sent out in advance of the event however they have since been sent out which I appreciate. Some of the presenters were quietly spoken which did make it a little harder to hear when there was noise outside of the room or outside on the street.  

It was interesting to see that all three professionals agreed that collaboration is not a small token thing or a tick box exercise. That individuals with lived experience are needed at all points of discussion. This was a point that seemed to translate into the small group workshop as well as the fact that research takes too long to translate into practice. The small groups were run incredibly well with the questions being left on the screen and open to interpretation of the groups. This was shown in the feedback session as my own group looked at the question of why we think it is important we collaborate and learn from each other from an overall perspective rather than our own professional practice. This illustrated a greater need for individuals with lived experience to be part of the discussion as it made me feel that my input was valid and important. 

I feel that events like this one are a fantastic way to share knowledge between diverse groups of individuals however without the people who make the decisions also being in the room it feels as though the conversations will not translate to change. The clinical professionals in the room reiterated this point numerous times throughout the discussions which I feel the organisers could use to discuss with parliament to attempt to start the change that is so desperately needed. It is important to have everyone in the same room as it allows for a faster response to points being presented, discussions as to if an intervention has been tried before, did it work or are there other creative ideas that could be tried?  

In the future there needs to be a greater range of professionals invited to the knowledge exchange. I know that teachers, GP’s, and nursery professionals would need the events to be held as part of an official training to be able to attend. There needs to be more discussion of what these events change, an illustration of the impact they have on professionals and how they help make the change that is needed.  

Finally, I feel that a section held by someone with lived experience would be incredibly impactful as it would allow professionals to see why the change is needed. It would also allow, if the person were happy with this, for professionals to ask what people want as well as be able to explain their position on the current course of action. I for one learned that most people who work with autistic people in a clinical environment want change however they are also aware of the challenge to create this change. As a person who has little trust in the NHS this helped me feel hope for the future as it showed that I am not alone in this fight and for that I am incredibly grateful for the opportunity to have attended this event.