ARFID: two recent publications
Avoidant/Restrictive Food Intake Disorder (ARFID) is a serious eating disorder characterised by extreme food avoidance, sensory based restriction, or fear-based refusal. [1]
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Two important new reports have been published concerning the devastating consequences for children, young people and their families that result from the appalling lack of recognition and support for those with ARFID.
The first, is a report by Dr Benjamin Newton for the Parent and Carer Alliance C.I.C.[2] concerning a severe lack of suitable ARFID services in the Gloucestershire region. The Press Release to the report refers to ‘parents fighting for services that aren’t there, facing ridicule and disbelief from the professionals who are meant to care’.
The report refers to the harm children with ARFID experience, including ‘life-threatening malnutrition’ and of families living with ‘high levels of anxiety, isolation, and distress as they try to keep their children safe without professional support’. The Press Release to this important publication can be assessed by clicking here and the Full Report can be accessed by clicking here.
The report’s findings are reinforced by a posting on the extraordinarily insightful and important georgejulian webpages, entitled ‘Prevention of Future Deaths Reports: autism and ARFID’’. The site records in meticulous detail, Coroners ‘Prevention of Future Death’ (PFD) Reports concerning the deaths of learning disabled and autistic people.
The posting refers to a number of ARFID related reports, but its central focus concerns Joshua Allcock who was five when he died in early 2023. The Senior Coroner’s PFD Report concluded that Joshua ‘died from severe dehydration due to limited fluid intake … exacerbated by his conditions of autism and Avoidant Restrictive Food Intake Disorder (ARFID)’.
Distressing, as is the georgejulian account, it is essential reading – emphasising (as it does) many truths that almost all parents of a disabled child know to be self-evident.
Less than two weeks before his death, Joshua (who was non-verbal) was separated from his mother for the first time and placed with foster carers who were provided with insufficient information about his health and dietary needs.
In the week that followed, Joshua became dehydrated and was admitted to hospital but then discharged. Three days later he was seen by a GP whose examination failed to detect dehydration and on the next day he was readmitted to hospital – severely dehydrated. His condition declined rapidly; he was transferred to Birmingham Children’s Hospital and ‘despite intensive treatment’ he died.
The Coroner’s PFD Report notes, that after his death a Root Cause Analysis investigation by the hospital was undertaken to ‘identify the lessons learned’. In this respect the georgejulian blog comments ‘I really think we need to stop seeing the premature deaths of learning disabled and autistic people as opportunities to learn lessons’. The blog includes the following telling comments and questions:
Given that Joshua was a child in care, he had developmental delay and was nonverbal and his grandparents had raised significant concerns … . Why was there so little interest? Why so little professional curiosity? Joshua was being cared for by people who barely knew him, so why were the concerns of his family, who did know him well, not heeded?
This is such a common finding following the deaths of learning disabled and autistic people, of all ages. That the concerns of those who know them well, family and carers, are often not listened to or taken seriously. As is the lack of understanding of ARFID amongst professionals, even those working with autistic people.
The blog refers to other PFD Reports concerning young autistic people who have died due to complications of ARFID. One such report concerned Alfie Nicholls[3] – who was 7 when he died. The blog notes that the coroner ‘found there was a lack of understanding of ARFID and the dangers of a restrictive diet and that this was compounded by an indifference and normalisation to it’ and that a ‘lack of professional curiosity seems a persistent theme, alongside the failure to listen to families’.
A further inquest report cited in the blog concerns the death of Owen Hinds who was 26 when he died. He was ineligible for specialist support, because ‘his diet concerns [were] linked to his ASD’. Which, as georgejulian observes, is a ‘remarkable statement, yet we see it all the time, autistic and learning disabled people denied access to universal services due to their disability, something that surely must be a blatant breach of the Equality Act.’
The coroner’s report referred to ‘Owen’s Autism’ as being ‘the root cause of his death’ as there was ‘no specialist service commissioned to provide ASD patients with long term dietetic support’. In relation to this extract, georgejulian observation (like all her observations) is particularly acute – and please read her blog – it is so important and ‘direct’.
Owen lived in the Nottingham area – which takes us back to Dr Benjamin Newton’s report for the Parent and Carer Alliance C.I.C. There is no service in Gloucestershire, there was [is?] no service in Nottinghamshire – where exactly in the UK is there an adequate service for ASD patients with ARFID / in need of long term dietetic support?
The georgejulian blog ‘Prevention of Future Deaths Reports: autism and ARFID’ can be accessed by clicking here.
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[1] Dr. Benjamin Newton “There are no services”: Gloucestershire parent carers’ experiences accessing support for restrictive eating and swallowing difficulties calls for urgent national action on ARFID failures (2026, Parent and Carer Alliance C.I.C.)
[2] Ibid.
[3] Georgejulian refers to a ‘devastating interview by Zoe Connor with Alfie’s mum, Lucy in Dietetics Today where she describes her desperation and how no-one would listen to her’.
Posted 2 February 2026.