Who we are

I am an eating disorder clinician at heart and work in a CAMHS setting as a clinical psychologist with children, young people, and their families. I feel very privileged to work with families every day, supporting them at their most vulnerable and seeing young people take steps towards recovery. However about 10 years ago I realised that one way to meet clinical need on a larger scale was to use research and innovation to support our understanding of why some eating disorder treatments work for some and not for others. This led me to join Edinburgh University where I now also work as a Senior Lecturer and co-founded our Eating Disorder and Behaviour Research Group. I feel frustrated at the lack of eating disorder research that has been produced globally in comparison to other conditions, despite a very clear clinical need, and that there are populations that have been underrepresented in the research that has been conducted. I notice this especially with Autistic individuals where there is an urgent need to expand our understanding of the presentation of eating disorders and to develop new eating disorder treatment approaches and techniques. I believe that the only way we can make meaningful change is to work in partnership with Autistic people with lived experience of eating disorders and I feel privileged and excited that EDAC will provide this opportunity.

My background is in autism research, driven by a desire to better understand the internal processes and real world experiences of my two Autistic brothers. I have worked with Autistic groups and groups who have Learning Disabilities for over 15 years, looking at social cognition and mental health. I am passionate (and protective) about the Autism community and I am keen to do research that 1. They find important and 2. Will have real impact in their lives. I moved to Edinburgh University in 2019 and joined the Eating Disorders and Behaviours Research group (with Fiona Duffy and Helen Sharpe). I was keen to understand what caused eating disordered behaviours in Autistic groups. This inspired Fiona, Helen and I to join forces with other key researchers across Edinburgh University, Kings College London and Aberdeen University to do this multi-disciplinary, co-participatory work with the Autism community and communities with Learning Disabilities to co-produce priorities in eating disorder research and improve services and support.

I work in the field of autism and eating disorder for a number of reasons. I became interested in autism research after working with Autistic children during high school and university, with a particular interest in the processing and integration of sensory information. At the same time, I wanted to follow a clinical psychology route, interested in internalising and eating disorders following my own and my peer’s experiences. After learning about the high overlap of autism and eating disorders, I did my PhD looking at the role of sensory, social and emotional factors in understanding this co-occurrence. I am really looking forward to working with you and being guided by you, collaborating and working towards improving the support and quality of life for Autistic people with an ED.

I have a longstanding interest in the factors that make some young people more likely to develop difficulties around eating and body image. I have done a lot of research in this area including through my role co-leading the EDIFY consortium (https://edifyresearch.co.uk/). We know that there are many different pathways into eating disorders and it is likely that the factors that drive eating disorders in autistic and neurodiverse individuals are different to those in their neurotypical peers. I’m delighted to be part of EDAC, working with autistic individuals to better understand their experiences of eating disorders.

Through my roles as a support worker and HLTA, I encountered many Autistic individuals with feeding difficulties across a range of ages, genders, ethnicities and presentations. Despite not being neurodivergent myself, I felt my own experiences of overcoming an eating and feeding disorder meant that I could empathise with all of these individuals to some degree and felt that a career in research would allow me to enhance the utility of this shared understanding. Therefore, I decided to return to university and get my Master’s in Autism Research before being lucky enough to begin my work here at EDAC. I am truly excited to work alongside the neurodivergent community to utilise lived experience and reshape the narrative of research to fit within a neurodiversity framework that serves the needs and wishes of the Autistic-Eating Disorder community.

My research in neurocognitive and emotional processes in eating disorders as well as clinical experience for many years made me to think about links between eating disorders and autism.

With support and help from my research and clinical colleagues we have developed PEACE pathway
www.peacepathway.org with the idea to support patients, families and clinicians working together to make treatment and recovery journey easier for people who have both conditions. We have long way to go but this is good starting point to collaborate more and develop further our research and clinical approach to support autistic community with mental health issues. EDAC is a great team of multidisciplinary professionals and people with lived experience. What an honour to be part of this group and do more collaboration and creative thinking.

Hi, I am Ellen (she / her), I am the peer researcher in the EDAC team and I am also currently studying Philosophy. I am really passionate about bringing together autism and eating disorder research because I have lived experience of an eating disorder and I am a late-diagnosed autistic! I get asked a lot if my autism diagnosis changed the treatment I received for my eating disorder and the answer is “not yet”. My hope for EDAC / the future is that people with stories like mine can say, “yes.”

Hello, my name is Michelle Sader, and I work as a post-doctorate researcher at EDAC. I have a longstanding personal and professional interest in eating disorders (EDs). When I was 15, I was diagnosed with anorexia nervosa - I have fortunately since recovered, but have since been very focused on learning more about how ED-related experiences can vastly differ across individuals or communities, particularly the neurodiverse community. This personal focus has shifted towards the professional, in which I received my BSc in Neuroscience with Psychology at the University of Aberdeen. My PhD, also conducted at the University of Aberdeen, focused on investigating brain structures implicated in emotional regulation, and how these regions are further associated with the regulation of our appetite. My personal aim in working with EDAC is to assist in providing a space where autistic people experiencing an ED can feel adequately supported and heard.

I am interested in how arts-based methods and design research can work well with different communities and individuals. I come from a making background (jewellery and silversmithing) and am interested in how craft as a process might help us think about this. In the past I have worked with mental health service users and with the adult social care workforce using participatory and co-design methods informed by the Person-Centred theory in psychotherapy.

I am a post-doctoral researcher in psychological medicine at King’s College London. My main research interests are autism, eating disorders, and psychopharmacology. My PhD project focussed on autistic traits and social cognition in anorexia nervosa, and since then I have become passionate about improving mental health and quality of life for autistic people.

I have always had a strong focus on trying to understand how things around me work, and this was one of the main drivers for studying physical sciences at University. During my undergraduate degree I discovered I could use physics to understand how the body works too.

Magnetic Resonance Imaging (MRI) was only 10 years old when I began my journey in Medical Physics. I started out with something simple, the heart, but decided that I wanted a bit more of a challenge so switched to the brain. Part of that was seeing that while I like structure, being organised and always being early for appointments, some people are the opposite, spontaneous, in a rush and often late. Our brains are very complicated, but some things are the same for everyone and some things are different, our brains also change as we get older and it is important to know what these differences and changes are so we can support people when things get difficult.

The EDAC project will allow us to better understand the similarities and differences between Autism, Intellectual Disabilities and Eating Disorders.

Bio coming soon...

I am the CEO of SWAN, an autistic-led Charity run by and for autistic women, girls and non-binary people across Scotland and within the SWAN community we see the very real impact of eating disorders for autistic women, girls and non-binary people, combined with issues accessing appropriate support and understanding.

Neurodivergent communities are disproportionately affected by eating disorders for a number of reasons relating to our specific experiences, which require an informed approach to understanding and supporting disordered eating which is often overlooked or misunderstood in mainstream services.

Since 2021, SWAN has been working closely with colleagues in CAMHS services to share and develop our understanding of how best to include, listen to and meet the needs of autistic women, girls and non-binary people experiencing disordered eating. We have also held a multi-agency panel event, spoken at the 2022 BEAT Conference in Glasgow and delivered autistic-led training and consultancy work on autism and eating disorders for outpatient and inpatient CAMHS services, and eating disorder Charities, across Scotland.

Involving and representing our network of autistic women and non-binary people is key to everything we do at SWAN, so we were delighted to be asked to join EDAC in their authentically collaborative and inclusive approach to bringing research into autistic experience and eating disorders together to drive change. The level of interest we have had from our network in getting involved in the various strands of this project is a clear indication of the impact that disordered eating has on the autistic community, and of the support for this much-needed shift towards centring lived experience. We are excited about the potential for positive impact on understanding and support for our community that this project represents.

I have the privilege of working at SWAN as the Projects Lead. Within my role, I oversee our post-diagnosis support services, such as our groups and webinars, which provide peer-led support and create safe spaces for autistic women and non-binary individuals to explore their autistic identity and reduce isolation through community and connection.

It is within these spaces that we see the very real impact of eating disorders for autistic individuals with many sharing their stories around eating, the responses and judgements of others combined with issues accessing appropriate support and understanding.

As Project Lead at SWAN I ensure that our autistic-led training is built on the voices, experiences, and learning of the SWAN community and this is no different for the training and consultancy work we have deliver around eating disorders. Over the last few years this has been a priority for us and we have worked alongside CAMHS services across Scotland, Adult ED services, Eating Disorder charities and as well as speaking at conferences and events.

To partner with EDAC and see the way they authentically work in collaboration from the beginning, taking time to listen and develop shared understanding at every stage has generated such a positive response from those already involved and hopefully go on to drive a much greater autistic-led understanding of eating disorders.

I feel excited to be representing SWAN in partnership with EDAC as for me the importance of understanding the relationship between autism and eating disorders is clear. My own frustrations at society's lack of understanding about autistic relationships with food, sensory experiences, trauma and social pressures that are only then magnified by inaccessible services have been echoed by so many in the autistic community and many attempts to slightly adapt existing neurotypical approaches and services from an outside-in perspective have just been a sticking plaster without an informed consideration of autistic lived experience.

The collaborative and culturally sensitive approach that is being taken to this research by EDAC will I believe create an opportunity for meaningful change and has real potential for a positive shift in knowledge and understanding.

Bio coming soon...