PEACE stands for Pathway for ‘Eating disorders and Autism developed from Clinical Experience’. PEACE works together with autistic or suspected autistic young people who have an eating disorder, their families and clinicians to improve understanding and promote inclusive care and treatment for eating disorders. 

Growing research has indicated a high co-occurrence between eating disorders and autism, leading to the development of PEACE. The South London and Maudsley NHS Foundation Trust National Inpatient Eating Disorder Service developed the initial pilot PEACE project for adults with anorexia nervosa and co-occurring autism. Their research reported that, on average, between 20 to 35% of people with eating disorders meet the diagnostic criteria for autism across multiple studies (Westwood and Tchanturia, 2017). Another study of children and adolescents with restrictive eating disorders found that 16.3% of those with anorexia scored above the threshold on a screening measure for autism (Inoue et al., 2021). We saw the opportunity to extend this learning, apply the PEACE model to children and young people in a community setting and improve care pathways.  

This research led to the development of the PEACE BOB project, which supports the treatment and care of young people across Buckinghamshire, Oxford and Berkshire (BOB) children and adolescent eating disorder services.  

The ability to accurately identify autism in eating disorder populations can have a significant impact on recovery, as autistic people with an eating disorder are at risk of poorer treatment outcomes in the absence of reasonable adjustments (Li et al., 2022; Babb, 2021; 2022). The project aimed to learn from those with lived experience and make existing care pathways related to eating disorders more neuro-inclusive from the very beginning of someone's journey.  

We focused on three areas of service development, including early help, early intervention and improved care for autistic young people with complex experiences of eating disorders.
 

Participation and co-production 

In the development, design and delivery of the PEACE BOB project, the voices of autistic or possibly autistic young people with eating disorders and their families have been integral. Individuals with lived experience have been involved in a range of ways, including: 

• providing feedback and ideas in our meetings and participation groups
• contributing to the development of resources and interventions
• co-facilitating our parent support group
• training and presentations. 
   

Screening and reasonable adjustments 

When young people first meet with their local eating disorder services, we know these initial interactions can significantly impact building a good relationship with clinicians and supporting young people to feel more at ease in sessions. This understanding led to the introduction of sensory wellbeing boxes, which include sensory items for young people to use in sessions, in each eating disorder team for clinicians to access.

We also created a reasonable adjustments checklist to support clinicians in making adjustments during sessions. The team also assists the process for autism assessment referrals and provides families with signposting and information about what to expect in their journey towards an autism diagnosis. The PEACE project has also introduced screening tools to help identify possible signs of autism, which can help inform tailored eating disorder care and signposting to further information and resources.
 

Consultation 

Across PEACE BOB, we developed a consultation model, which provides a space for clinicians to discuss cases. Clinicians can consult with each other to develop an initial understanding of the young person's autistic needs, offer advice on reasonable adjustments in treatment and create a clear plan to be implemented. Our consultations are offered in different formats, including individual consultations, groups and discussions where young people are affected by greater complexity. 
 

Low-intensity interventions 

Over the last year, the PEACE team developed a number of low-intensity interventions to support the wellbeing of autistic young people with eating disorders.  

These have been designed to be delivered alongside eating disorder treatment, typically once the young person has restored some weight.

Each intervention involves going through a workbook with an assistant psychologist.   The interventions can be adapted and tailored for the individual – for example, concerning the young person’s communication and learning preferences or needs. We are currently piloting these interventions and using feedback to develop the content and delivery. The interventions focus on various topics, such as ‘understanding emotions and helpful tools’, ‘coping with anxiety’ and ‘sensory wellbeing’.  
 

Direct support 

The team also directly supports cases with a focus on neurodivergence and understanding how autism and other factors (environment, other daily activities, education) are impacting the young person's recovery. This work includes being involved in assessment, formulation and care planning. We also work alongside other agencies and professionals involved in the young person’s care and support cases, escalating towards re/admission or returning to community treatment. 
 

Development of our website, resources and newsletters  

We recently launched a website (Peace Pathway) to coincide with Eating Disorder Awareness Week in February 2024. The website launch has allowed us to share our resources and personal stories from our experts by experience with audiences across the country. Within our CAMHS teams, we also launched a monthly newsletter to share local resources and connect with BOB-wide colleagues. We have shared this newsletter with wider CAMHS teams, which has been especially beneficial.
 

Research  

As part of our goal to better understand lived experience, we are conducting a research project called ‘What I Wished I Knew’. Through this, we are looking to bring together the perspectives of autistic or suspected autistic young people, their carers and healthcare professionals working with eating disorders. We hope to represent a wide range of eating disorder services to better understand their treatment experiences and what they wished they had known or had in place when starting their treatment journeys. We hope to publish the results from this study to further disseminate our learning to other clinicians and teams.
 

Conclusion  

One of the main aims of PEACE BOB was to highlight the need for specialist support for young people who are diagnosed as/suspected to be autistic with an eating disorder. Based on previous research, it was indicated that a significant proportion of young people receiving care from eating disorder services were likely to be autistic. To test this assumption, we conducted a review of the caseloads in eating disorder teams across BOB. Findings suggest between a quarter and a third of young people may be autistic. Nearly 20% have a formal diagnosis. These findings highlighted that many young people under eating disorder services would likely benefit from additional support or adaptation to routine treatment to meet their needs. The outcome reaffirmed our drive towards neuro-inclusive care as integral to supporting the needs of young people under eating disorder services.  

We also wanted to hear from clinicians about their experience of PEACE and the expertise that we provide. Initial feedback around the effectiveness of our consultations was positive, and 90 to 95% of staff reported improved case outcomes. When asked, 77% of staff also reported increased confidence and 95% were satisfied with their experience of consultations. We hope to collect more data around consultations to evaluate the ongoing impact of PEACE.

To further share knowledge on the overlap between autism and eating disorders, PEACE delivers monthly webinars to staff with guest speakers to share their specialist knowledge. The ability to offer a digital training programme, with webinars and workshops, expanded the reach of our limited workforce and enabled flexibility for teams and services to access a range of material and support. Our training webinars have been well-attended, with usually 50 to 150 attendees who have engaged with our content. From collecting feedback from staff, 100% of webinars increased attendees' confidence in working with autistic people affected by eating disorders. Staff describe the webinars as ‘informative’, ‘thought-provoking’ and highlight the value of experts by experience sharing their knowledge.

We have now offered direct interventions to 44 young people across BOB, and this number continues to grow as more young people receive input from PEACE. We aim to continue expanding PEACE’s work by evaluating the project’s effectiveness and disseminating knowledge. We held an online conference in March 2024 to showcase PEACE’s positive outcomes within BOB eating disorder services. 

The development of PEACE BOB has been a brilliant example of using innovation funding to improve evidence-based practice and raise awareness about the overlap between autism and eating disorders, while also embedding lived experience within practice. By increasing knowledge and understanding of autism, eating disorder services can provide tailored neuro-affirmative care that accounts for the needs of autistic young people. We are currently working on embedding learning from the project into BOB CAMHS. This approach has the potential to benefit autistic people who experience other types of mental health difficulty too and we hope to see its expansion into wider mental health care for both children and adults.