For anyone working within eating disorder (ED) services, it will come as no surprise that there appears to be a connection between eating disorders and autistic spectrum condition (ASC).
Westwood & Tchanturia (2017) estimate that comorbidity is as high as 37%, with crossover symptoms such as fixed thinking patterns, poor social functioning and high sensory sensitivity, making recovery more complex (Lang et al., 2016; Leppanen et al, 2018; Tchanturia et al, 2012; Tchanturia et al, 2013; Tchanturia et al., 2017; Westwood et al, 2016).
The ‘Pathway for Eating disorders and Autism developed from Clinical Experience’ PEACE pathway programme (@PEACE_Pathway), formed specifically to increase understanding and improve care for patients with a dual diagnosis.
The starting point for the PEACE pathway was conducting interviews with patients, carers and multidisciplinary professionals involved in the treatment of those with a joint diagnosis of ASC and ED. These interviews, alongside background research (Adamson et al, 2020; Kinnaird et al, 2017; Kinnaird et al, 2019) highlighted 5 main themes that needed to be tackled as part of the treatment programme:
- Acknowledgment of how ASC and eating disorders interact
- Address the sensory issues accompanying an autism diagnosis
- Recognise that therapeutic relationships take longer to build due to poor social interaction
- The need for a patient specific flexible approach
- Increased training and support for clinicians in working with a joint diagnosis.
The PEACE pathway research was intended to be active and responsive, therefore a Plan, Do, Study, Act (PDSA) approach was used during the 2-year study with the South London and Maudsley NHS Foundation Trust Eating Disorder Service. This was applied to a number of areas within the programme:
Clinicians from all disciplines were given training on how care could be adapted to better meet the needs of patients with autism. Training was given on diagnostic tools, ‘Autism Diagnostic Observation Schedule-2’ (ADOS-2) and ‘Autism Diagnostic Interview-Revised’ (ADI-R). Feedback at the end of each session revealed that clinicians gained insight and understanding into different aspects of ASC, particularly how girls mask autism symptoms. Further training was provided on sensory and environmental changes helping professionals build up a ‘toolbox’ of techniques enabling treatments to be adapted to the needs of the patient.
Feedback from the sessions revealed:
- Confidence in treating patients with comorbid ED and ASC rose from 48% to 68%
- Confidence in adapting practice rose from 45% to 64%
- Formulation adaptation training led to a 35% increase in confidence
- 92% agreed training had given them increased knowledge, skills and tools, with 97% saying they would recommend the sessions.
2. Staff support
Weekly 15 minute team huddles and monthly multi-disciplinary team meetings were introduced to allow all staff involved in patient care (from clinicians to domestics) to focus on the specific needs of co-morbid patients. This improved communication meant that all staff felt heard leading to more effective adaptations.
3. Patient identification
A challenge facing practitioners was that autism is often viewed as a predominately ‘male’ condition, whereas eating disorders are stereotyped as ‘female’, this alongside a tendency for girls to ‘mask’ their symptoms in order to fit in, means that an ASC diagnosis can be overlooked (Carpenter, Happé & Egerton, 2019).
Bearing this in mind, all patients entering the eating disorder service at the South London and Maudsley NHS Trust, were screened for ASC using the Autism Quotient-10 (AQ-10), this identified patients needing further assessment. The training given as part of the PEACE programme also assisted in helping clinicians spot symptoms of autism, leading to higher identification of patients who may previously have been missed.
4. Addressing sensory sensitivities
The need to address sensory issues was considered essential to the PEACE pathway as research shows that the treatment environment can be over-stimulating for patients with ASC (Tint et al., 2017). By working with the National Autistic Society, NHS Trust Autism professionals and patient groups, it was possible to make a number of environmental changes including:
- Neutral and low stimulating colour scheme with decluttered ward spaces
- Covers for staff keys to reduce the noise
- Predictable meals with commonly bland, soft textured food options
- Development of a 5-week, sensory course, run by occupational therapists (OT) with help to create sensory boxes containing items such as lavender, bubbles or fidget gadgets
- Introduction of a one off sensory workshop for ALL patients, to explore their sensory needs and encourage patients to think about how they can self-soothe to meet these needs
- Introduction of a ward based sensory box with larger more expensive items such as weighted blankets/ vests, ear defenders and essential oils
- Use of huddles to refocus and reflect on sensory issues.
5. Psychological treatments
Qualitative feedback throughout the PEACE programme highlighted that commonly used motivational interviewing was found to be challenging for patients with ASC as the use of open-ended questions and metaphors is at odds with thinking patterns that are fixed and literal. Something that was perceived as less threatening was the use of cognitive remediation therapy (CRT) and cognitive remediation and social skills training (CREST).
Simple yet effective measures taken by the programme was to have a welcome pack with specific information about the ward, routines and what to expect from treatment along with collaboratively completed communication passports, with information about preferred communication styles, sensory needs, likes and dislikes.
6. Carer support
Whilst still in the development phases, this has involved, a monthly workshop to offer psychoeducation, support and feedback for carers on the progress of the PEACE pathway. Something that proved particularly popular was informal coffee mornings facilitated by a psychotherapist as it provided the chance to discuss concerns with a professional and gain peer support.
Implementing the PEACE pathway has highlighted a number of challenges:
- Staff resistance as people initially perceived this as an increase in workload. The use of huddles helped, as it meant all voices were heard, thereby increasing staff understanding of the need.
- The importance of good communication has been highlighted. Adopting a new way of working always has challenges, therefore it’s vital that all forms of communication are accessible to everyone involved in the PEACE pathway.
- Resistance from patients without co-morbid autistic spectrum condition (ASC). This has been addressed by opening up the work on sensory boxes to all patients, and by offering the PEACE menu to all patients 3 times a week.
The majority of the work within the PEACE pathway programme has focused on patients and clinicians. Whilst work on carer support has begun, there are plans to further develop this. It has also been recognised that ASC patients, with a comorbid eating disorder, are not confined to anorexia-nervosa, but are equally likely to have other diagnoses such as bulimia-nervosa or binge eating disorder, so this work needs extending to reach these patients.
It is also worth noting that there is an overlap in symptoms of ASC and “personality disorder”, especially with women (Anckarsater et al., 2006; Hofvander et al., 2009; Lai & Baron-Cohen, 2015; Lugnegard et al., 2012), it would be interesting to see how the PEACE pathway could be adapted to include patients with this diagnosis.
Strengths and limitations
This project was focused on the needs of stakeholders within the South London and Maudsley (SLAM) NHS Trust Eating Disorder Service and the project has adapted and developed in real time according to these needs. Whilst this is a strength as it demonstrates the adaptability of the programme, the findings and application of ideas may differ in other areas/ rusts.
Implications for practice
It is hoped that the information provided from this study will enable other ED services to “give PEACE a chance”. This is very much an ongoing project, but by the ideas and principles being repeated, adapted and mapped in other areas and trusts, it is hoped that the core elements required to make PEACE work, will become evident.
Conflicts of interest
The project was funded by independent charities, ‘The Health Foundation’ and ‘The Maudsley Charity’ in association with researchers at SLAM NHS Foundation Trust, the Institute of Psychiatry, Psychology and Neuroscience, Kings College London, and community organisations.
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