An autism research charity have highlighted a link between autism and anorexia and called for the NHS to acknowledge this and adapt their support.
Autistica asserts that study findings suggest that as many as one in five women presenting to UK clinics with anorexia may also have autism and that tailored assessments and treatment from health professionals are vital to ensure that they receive the care and support they need.
The charity’s Director of Science, Dr James Cusack, wants the National Institute for Health and Clinical Excellence (NICE) to update guidance to reflect this.
The current guidelines do not include any references to autism, and Dr Cusack said the issue also requires “more NHS services involved in research, both informing studies and carrying out trials in eating-disorder care settings.”
Former Health Minister Norman Lamb supported the proposals, saying that practice needed to catch up with research, as: “We may well be applying inappropriate care to women with both conditions.”
A tailored approach to eating disorder care could include making simple changes, such as implementing different communication strategies and creating a friendlier environment.
NICE said, however, that, although it was clear that factors such as autism should be taken into account when it came to eating disorders, there was actually “very little” evidence that healthcare approaches would need to be modified in such cases.
The BBC’s Victoria Derbyshire programme spoke to a 24-year-old woman who believes that her anorexia was directly caused by her autism.
Sophie McInnes said she did not have body image worries or issues with weight gain but had instead developed a set of rules for herself about how many calories she could eat and – despite wanting to put on weight – her at-the-time-undiagnosed autism meant she would not let herself.
Sophie explains: “It was all about the calories, all about the numbers.
“I actually admitted myself into the eating disorder unit because I had started exercising a lot and I wasn’t eating anything.
“They put me in a wheelchair and said my weight was so low that if I didn’t eat, I would need to be sectioned.”
Even when Sophie left the unit she continued to struggle to gain weight and it was only last year, several years after checking out, that she was finally diagnosed with autism. She says if the link had been spotted sooner, it would have helped with her recovery.
A leading autism researcher from University College London, Will Mandy, says that the issue is made worse by the fact that female patients are much less likely than men to be recognised as having autism.
He argues that “high levels of stress and anxiety” caused by the condition remaining undiagnosed throughout childhood and adolescence could contribute to people developing serious mental health conditions, including eating disorders.
Mr Mandy added: “If you don’t know somebody is autistic, it becomes quite hard to help them and to adapt treatment to being autistic.”
Meanwhile, Caroline Norton from South London and Maudsley NHS Trust’s Eating Disorder Service says that one-to-one sessions can be held with patients who have autism in order to remove the noise of others in the same space. In these sessions, patients learn to make food with a dietician.
She also explained that one individual would only give limited communication face-to-face but would follow up sessions with a lengthy email – something they learned from.
She concludes: “It’s about meeting the individual at the level that they need.”
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Their health and social care range includes Care Certificate Manuals and Level 1 Core Awards for the induction of new workers, Level 2 and 3 Core, Special Focus and Clinical Skills Awards mapped to the CQC fundamental standards and the RQF units as well as further training for managers, supervisors and assessors.
Their portfolio includes training in subjects such as Introduction to the Autistic Spectrum, Learning Disability Awareness, Understanding Mental Health and Mental Health Awareness, among many others.
A Health and Social Care Trainer at FRT explains: “Eating disorders can be very complex and individuals may have a number of related issues or conditions that require their care and support to be adapted.
“It is clearly very important that all care services are person centred, and this is even more vital when considering mental health disorders and their link with learning disabilities and autism.”
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