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Mental Health is a Universal Human Right: Autism and Eating Disorders

Updated: Dec 7, 2023

As part of our World Mental Health Day Blog Series, Dr Emy Nimbley reflects on this year's theme and shares some of the new research being undertaken by the Eating Disorder and Autism Collaborative here at the University of Edinburgh.

 

Autism is not a mental health problem, however being Autistic may mean you are more likely to experience mental health difficulties. According to a recent survey, seven out of ten Autistic people have a mental health condition, such as anxiety, depression or obsessive-compulsive disorder (OCD), and up to 80% of Autistic adults experience mental health issues at some point in their lives. Why these figures are so high in autism remain largely unknown, although several reasons have been suggested. For example, Autistic people may struggle to make sense of a neurotypical world, which can lead to feelings of anxiety or depression, or they are more likely to experience stigma and discrimination when accessing support services.


Recently, there has been a lot of research interest into autism and eating disorders (EDs), particularly anorexia. In fact, it has been suggested that up to a third of people with anorexia are Autistic. Anorexia has one of the highest mortality rates of all mental health conditions and remains particularly poorly understood in autism. Several Autistic traits have been suggested to be important, such as sensory-based aversions to food, difficulties detecting feelings of hunger and fullness, rigid thinking styles and emotional difficulties.


Autistic people report difficulty accessing and engaging with ED treatments. These tend to be psychological treatments that are better suited to neurotypical thinking styles, such as Cognitive Behavioural Therapy for Eating Disorders, or neurotypical communication styles, such as Family-Based Therapy. As a result, Autistic people with EDs have been found to have longer inpatient stays, use ED services more often and show more severe and longer duration of ED symptoms compared to their neurotypical peers. On top of the significant mental health burden of living with an ED, Autistic people with EDs have also been found to have poorer mental health outcomes, such as higher rates of depression, anxiety and OCD. Therefore, it is clear we are falling short of making sure that mental health is a universal human right for Autistic people with EDs.


A new UKRI-funded research project led by Dr Karri Gillespie-Smith and Dr Fiona Duffy at the University of Edinburgh is looking to solve this. Over the next few years, researchers at the Eating Disorder and Autism Collaborative (EDAC) will collaborate with autism and ED researchers, clinicians, stakeholders and person’s with lived/living experience to advance the field of autism and EDs. At the centre of EDAC is a belief that translatable and meaningful research for Autistic people with EDs should be conducted by Autistic people with EDs. Using co-production and participatory research designs, researchers will look to identify research priorities within the community and conduct co-produced research to further understand the impact of EDs on Autistic people. This research will then be used to inform clinical practice and work towards improving care and support for Autistic people with EDs.


It is clear that more is needed to protect and support the mental health of Autistic people, particularly those with EDs. It is hoped that research projects will follow EDAC and include Autistic people with EDs as researchers, stakeholders and participants in future studies. This will make sure that researchers conduct more meaningful research that reflect Autistic priorities and experiences, and ensure that we are working together to ensuring mental health is a universal right for all. If you would like to learn more about EDAC or sign up to hear about events and opportunities, please sign up to the mailing list through the following link: https://forms.office.com/e/vz1gmyqrp0, or follow us on twitter @EDACautism_ED!

 

Dr Emy Nimbley

Postdoctoral Research Fellow in the Eating Disorder and Autism Collaborative (EDAC), University of Edinburgh

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