The mortality rate for eating disorders (EDs) is the highest of any mental health condition. They impact people of all ethnicities, sexualities, gender identities, ages, and backgrounds, without discrimination. People on the autistic spectrum, on the other hand, are disproportionately affected by these conditions. The relationship between EDs and autism spectrum conditions (ASC) is an area that is growing in terms of awareness, however, many individuals with this comorbidity are still not having their needs met by the existing treatments and are experiencing poorer health outcomes as a result.
I am a student mental health nurse who has devoted much time into learning about this comorbidity this year after seeing how it can impact people in terms of treatment, and one of my aims for when I begin my career as an eating disorder nurse is to ensure that those who have this comorbidity are receiving adequate support and an equal opportunity to recover.
Those with a comorbidity of an ED and ASC have poorer health outcomes, and both diagnoses can significantly overlap, thus, informing this into our nursing assessments and interventions is paramount. One of our roles as healthcare professionals is to prevent diagnostic overshadowing, which unfortunately, occurs too often with this comorbidity.
Although ED’s can affect anyone, they are mainly seen in females whereas ASC is often seen as a male condition. Although awareness on this matter is gradually improving, the gender stereotypes we may have as health professionals increases the bias in addressing the needs of EDs in patients with ASC, not to mention the problems that are potentially posed by diagnostic overshadowing. A misdiagnosis of this comorbidity can often lead many people with ASC having their needs unmet and feeling misunderstood, which ultimately, can exacerbate ED symptomology significantly. Since ED symptoms are likely to overshadow ASC symptoms, considering and understanding these factors during the initial nursing assessment may help make recovery more achievable and could enhance treatment outcomes largely.
Furthermore, another reason why ASC is overshadowed so often in ED’s could be because the assessment tools are limited that could potentially allow the practitioner to identify any specific needs with this comorbidity, and could assist with giving the patient an equal opportunity to recover as non-autistic people. Given this information, we should, as health professionals, establish a flexible approach that incorporates interventions that are manageable, reasonably adjusted, and person-centred to meet any neglected needs, and to work therapeutically with the individual to understand how the comorbidity is affecting them.
Additionally, it is important to consider that ASC is not identified as well in females in comparison to males, and the evidence strongly indicates that ASC in females is underdiagnosed. From this, many females can spend their lifetime feeling misunderstood and can even be given an incorrect diagnosis and treatment, which can be detrimental on both physical and mental health.
On the other hand, according to research, up to a quarter of those who have an ED are male, which may mean that we need to address any biases we may have as health professionals which could be creating barriers to males receiving a diagnosis and ultimately, treatment. This highlights the importance of eradicating gender disparities and stereotypes with both of these conditions and thinking more holistic and person-centred about what the problems are, how they are affecting the person, and how to address them in order to enable the individual to live the life they desire.
With around a quarter of patients with an ED having underlying ASC, the evidence strongly demonstrates that many patients with this comorbidity have needs that are not currently being fulfilled by the existing interventions and treatments. When this is connected to our role as healthcare professionals in ensuring that people with autism have equal access to treatment in terms of the physical environment, it emphasises the need for more work to be done in order to develop an inclusive and therapeutic environment.
Any healthcare professional working with those with ASC should aim to facilitate autonomy, encourage active engagement in care decisions, support self-management, and maintain individual relationships as much as possible. It is important that we develop relationships with patients with ED’s, and engage in conversations about their strengths and opportunities, with the primary aim of enhancing health outcomes. Regardless of the diagnosis, we need to be able to tailor our interventions in a way whereby any future aspirations, hopes, and ambitions, are considered as strengths, and to acknowledge what the possibilities are rather than just focusing on the barriers they are facing. Above everything else, we should not think of ASC as something that needs to be ‘cured’ or ‘treated,’ because it certainly does not. What needs to happen is to foster an inclusive atmosphere that values equality and diversity, as well as to recognise the gaps in support and the existing barriers.
When it comes to recovery, understanding how ASC affects ED’s can make a significant difference to the treatment outcomes. Those who are having in-patient treatment are usually made to eat meals in groups, which can be loud, stressful, and overwhelming; which makes eating and recovery much more difficult. It may also be problematic that the recommended and evidence-based therapies for ED’s include group therapies, which can be challenging for some autistic people. However, it is important that we do not simply presume that every autistic person with an ED has food sensory difficulties, struggles with social interactions, or needs adjustments made relating to their environment, but by understanding that we may need to make adjustments to make treatments fairer for people with this comorbidity is crucial.
Supporting families and carers is also an area that is often overlooked with this comorbidity. People with EDs, their caregivers, and clinicians have faced a variety of difficulties as a result of the coronavirus pandemic, including difficulty or changes in treatment, a lack of access to preferred food, and social isolation. Many parents and carers have expressed extreme distress because of unmet needs and a perceived lack of carer-focused support from health services when it comes to helping patients with this comorbidity. Since carers and parents have reported feelings of social isolation, hopelessness, and dissatisfaction with current services as a result of a perceived lack of awareness of co-occurring ASC and ED, more family engagement (if appropriate) and more collaborative working during treatment is required as an approach to understand needs and to build up the therapeutic recovery process.
Despite the fact that treatment options and clinical guidance are currently limited, there is some promising research and work being implemented, including the ‘Pathway for Eating Disorders and Autism developed from Clinical Experience’ (PEACE Pathway), which has been established primarily to enhance awareness and strengthen care for patients with this comorbidity. While this is still being developed, this pathway incorporates the current research, promotes inclusion, and supports professionals, families, and individuals with regaining confidence with treatment and recovery. Additionally, there are valuable training courses becoming increasingly available that help healthcare professionals to acknowledge how ASC and ED’s interact, know how to address any food sensory issues, and most importantly, how to make treatment as inclusive and as person-centred as possible.
There is no ‘correct’ way to support this comorbidity, and each implementation phase is a learning experience that will ideally include multiple resources. What is paramount to remember is that all the factors that are preventing optimum health outcomes and diagnostic overshadowing with this comorbidity can be prevented, and even though funding and resources appear to be limited, working with what we do know, engaging in research, and collaborating with all involved is a positive step forward.
Francesca Marina is a third-year student mental health nurse who will be working as an eating disorder nurse from July. You can connect with her on Twittter @Chescamarina.