Support for ARFID - what to expect

You might like to also look at one of my previous blogs related to the differences between ARFID and picky eating, as well as my blog on picky eating top tips. The picky eating blog has more 'try at home' strategies than this blog, since the crucial thing with ARFID is having the support of an experienced team of professionals and so really my key piece of advice is to ask your GP or paediatrician to refer you to the relevant professionals. In the UK there are some ARFID specialist teams such as Wren Psychology who accept private referrals but you can also ask the NHS in your area to commission them (or a similar service) if your child has ARFID and your local NHS does not have a service. This can be hard to fight for and you may find that you need to seek help from a local ARFID charity. 

In this blog I’ll try to give you an idea of the kind of support your child might receive and some key links for further advice and support. Currently there is not enough research evidence to definitively suggest the best treatment for ARFID, however, there are some recognised approaches and guidance is currently being written in the NHS. The key thing is that the approach needs to be individual to the child and their needs. For example, some older children may benefit from Cognitive Behavioural Therapy (CBT) alongside dietitian support but then for another child with a different set of circumstances, they might require more of an occupational therapy focus to their treatment alongside dietician input. All treatment should be multi-disciplinary and the team should be experienced in treating ARFID. Personally, I would want to make sure any professionals were neurodivergent affirming.

Psychological Therapies
If for an older child, it becomes apparent that there are unhelpful thoughts at the core of their eating disorder then Cognitive Behavioural Therapy (CBT) can help change those negative thoughts and actions. CBT can also support mental health conditions such as anxiety and OCD which can present alongside ARFID. Some success has been had using Dialectical Behaviour Therapy (DBT) which involves identifying and accepting negative emotions and working through them. Hypnotherapy has been found by some to be helpful alongside a desensitisation programme. Eye Movement and Desensitisation and Reprocessing Therapy (EMDR) therapy is well researched as a treatment for trauma and PTSD. There is some evidence that it can be helpful as part of ARFID treatment. Again, I would like to stress that the therapies chosen need to be the right ones for the child’s unique circumstances.

Dietician Support
Nutritional support and advice from a registered dietician is key.  Dieticians can help with nutritional assessment, meal plans, food fortification, safe use of supplements and food chaining. Your GP can check for iron deficiency and anaemia. 

Occupational Therapy (OT) and Sensory Integration Therapy (ASI)
All of our senses and our brain are linked and when they are not working well together then we do not have the strong sensory foundation needed to develop skills such as eating. Sensory integration difficulties can involve difficulties with sensitivity to touch, smell and taste, difficulties with postural control required to be able to sit to eat, difficulties with interoceptive awareness which may mean the child does not sense feeling hungry and difficulty with tactile perception which means the hands and the mouth is not making sense of what is in there and this can lead to difficulties tolerating texture. ASI therapy is usually carried out by an occupational therapist (some physiotherapists and speech therapists are also trained) and they need to have the required level of specialist postgraduate training. ASI therapy is child led and playful. ASI usually takes place in a specialist sensory clinic. You can have a virtual tour of mine if you are interested in what a sensory clinic looks like: click here

Speech and Language Therapy
This is important if your child has difficulties with chewing and swallowing. A therapist may look at muscle strength, coordination and tongue or lip movement to ensure chewing and swallowing are safe. They can help manage swallowing difficulties (dysphagia) or a fear of choking by rebuilding confidence in eating.

Parent Support
Please don’t forget your own needs. Supporting a child with ARFID can be anxiety provoking and stressful. Being part of a community where you can learn more about ARFID and hear the things that are working for some parents can be invaluable. There are lots of groups on Facebook and there may be a local support group in your area so please do join something.

Some general ARFID tips from the NHS:

• Grazing instead of structured meals
• Fortify meals for more calories
• Follow their lead
• Keep safe foods available for backup
• Keep safe foods in rotation (prevent food jagging)
• Introduce new foods through play
• Family-style or “buffet” serving
• Distraction can help
• Experiment with food presentation
• Fun & familiar utensils
• Keep unsafe foods separate
• Keep a “no-thank-you” plate
• Slow exposure, no pressure
• Adjust temperature & texture
• Let them shop, prep & cook
• Use a “taste test scale”
• Reduce mealtime anxiety
• Food first, then nutrition

Further Reading and Support:

• Parents tell me this book is very helpful. It's called Food Refusal and Avoidant Eating in Children, including those with Autism Spectrum by Gillian Harris and Elizabeth Shea.
• BEAT and ARFID Awareness UK have some good information, training and support and you don't need a formal diagnosis to access this.

A I have said, my previous blog had lots of practical strategies to try to support picky eating but I really wanted to make the point in this blog that ARFID is an eating disorder and if your child has this, then proper help from a multi-disciplinary team is required. One of my children is a picky eater and I know how hard that is, but I can’t even begin to imagine what you parents of children with ARFID are going through and what your children are going through; I truly hope you get the help that your child needs.

Hanna