For those unaware of ARFID, what are the differences between ARFID and picky eating, and how common is it that ARFID is dismissed as 'just being picky' in autistic children?

Food refusal is on a continuum. ARFID, when seen in young children, is usually a refusal of food based on its sensory properties. That is, if the food doesn’t taste right, smell right, look right, or the texture is difficult to accept in the mouth, then it will not be eaten. We then need to add in high levels of anxiety about foods that do not match the foods that are already eaten (new foods!). "If it doesn’t look like it should, taste like it should, smell like it should, I am not eating it."

All children, at around the age of 2-3 years, will go through a stage like this, when both new foods and foods eaten in the past are rejected - it's called the neophobic stage. This is often called picky eating. But picky eating and avoidant eating are just two ends of the same scale. A child who is very sensory reactive to foods and highly anxious might well get a diagnosis of ARFID, a child who is not very anxious but really doesn’t like food with a ‘difficult texture’ (that is, any vegetable!) will be called picky. 

Those with autism are more likely to have sensory processing difficulties, they are therefore more likely to show food avoidance based on the sensory characteristics of the food. In those with autism, unfortunately, extreme picky eating ( ARFID) is likely to be dismissed as "autistic eating". Sensory-based ARFID is, however, seen equally often in the neurotypical and neurodiverse and the presentation is exactly the same. Very few foods are eaten, and they will often be ‘brand specific’, and no new foods are tried. Food acceptance will also often be context specific. A food might be eaten at school but not at home. 

What needs are there amongst medical professionals for more specialised knowledge and awareness of ARFID?

Gradually health professionals are becoming more aware of ARFID, there are training programmes and even diploma in ARFID. But it is all very "patchy" and parents might well still meet with a health professional who has had no experience of the disorder. 

What difficulties do families face in getting an ARFID diagnosis, especially when it is being diagnosed as a co-occurring condition alongside autism?

There are very few care pathways in place for the diagnosis and treatment of all subtypes of ARFID. The early-onset sensory-subtype is, however, the most difficult to get help with. Who will see a four year old who doesn’t eat many foods, can’t sit with their parents to eat, or sit with other children at nursery or school – but whose weight is fine?

Weight loss is not a necessary criterion for a diagnosis of ARFID, but it is often a criterion for an NHS service to get involved. At the moment all NHS services are stretched to the limit – there are few who can or will diagnose, and very long waiting lists, and no clear intervention pathway for children with ARFID in the early years.

I find that it is often the parents who are better informed than many health professionals, and it is they who have unfortunately to lobby for care pathways and diagnosis.

Dr Harris is the author of a book 'Food Refusal and Avoidant Eating in Children' which you can see here.