ARFID – Preliminary Data

For the past few months, I have been collecting field data regarding the patterns and trends of ARFID, who it affects, how it affects them, and the overall experience of therapy and treatment services.

Some interesting patterns and trends emerged, and I’d like to summarise them here. Please be aware that these are very generalised patterns and plenty of counter-examples exist.

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Group One: The Socially Impaired

This group is by far the biggest group, and ARFID is generally characterised for them as being a broad problem covering many food groups. This is the group that has the greatest restrictions in terms of what their “safe” or acceptable foods are.

Most commonly, the social impairment takes on the form of autistic spectrum disorders, notably Asperger’s. But this group may most likely lack the most obvious outward signs and will have a normal appearance, behaviour, and speech.

Emotional sensitivity is high, as will be psychological awareness and empathy.

There appears to be a correlation between the level of food intake restrictions and social impairment.

This group is most likely to have an early onset (prior to the age of 4, commonly before age 2). The generalisation of ARFID refusal across different food groups is rapid and appears nearly instantaneous to parents and caregivers.

The manifestation of ARFID relates commonly to flavour, appearance, smell, and texture. There appears to be a relationship between sensory sensitivity and social sensitivity.

Group Two: The Traumatised

This group reports much of the same as Group One, but with the social impairment arising from childhood abuse and/or a highly stressful childhood.

Causes of childhood stress range from outright child abuse by the parents and persistent bullying at school to parental illness or alcoholism/addiction. The key here is not so much trauma (i.e., car crash and injury) but more about damaged and damaging relationships.

This group tends to have a slightly later onset of ARFID, usually prior to age 7, but nearly always prior to puberty. The generalisation of ARFID refusal across food groups is slower and can continue to develop over several years. This will puzzle parents and caregivers when a previously “safe food” is unexpectedly refused.

Concurrent diagnoses of OCD and PTSD are common.

Group Three: The Phobic

Unlike groups one and two, this group is more likely to be male. The degree of ARFID restriction is less and the onset of ARFID seems evenly spread between ages 0 and 7. Two respondents reported onset at age 12 and 13.

This group lacks the social impairment common to the first two groups.

The manifestation of ARFID is most likely to relate primarily to texture and fear of choking. About 1/3 of this group also report flavour and appearance as additional concerns.

This is the group that is least likely to carry co-diagnosis, though those that do are most likely to be diagnosed with OCD and other common childhood psychiatric labels (dyslexia, ADD, ADHD).

In my therapy practice, I have seen approximately half a dozen young people with texture-only ARFID. All were young males, and all were athletic. Their reason for seeking help was primarily because it was affecting their sports success, and for one patient, his intention was to join the military.

This is the group that can be most readily treated in a single session.

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Therapy for ARFID

Overall, the survey results demonstrated that nearly all psychotherapy and psychiatric services deliver poor results when it comes to ARFID. Most complaints took common themes:

• clinicians with minimal awareness and understanding of what ARFID was, disregarding the client’s experience and instead pushing their own theories and agendas.
• using poorly substantiated and ineffective approaches such as standard one-size-fits-all CBT and exposure/desensitisation therapy.
• over-reliance on medication and counselling approaches.

Of the small minority of people who reported good results from therapists, there appeared to be no pattern in terms of the approach used, and much depended on the personality of the therapist more than any technique employed.

For those who reported improvement in their symptoms, the majority of people reported better results from self-initiated changes with the support of their peers than from any professional help they had received.

Group Support

The most popular “therapy” reported by all three ARFID groups was that for peer group support. These exist on most social media platforms and gather a surprising amount of traffic. The Reddit sub r/arfid tends to attract ARFID sufferers whilst the Facebook groups that I looked at attracted mostly concerned parents and carers.

The benefits reported by users of these groups mostly involve normalisation, including:

• the discovery that they were not alone and that there are many other people with this problem.
• the ability to be able to talk about their issues without being judged or made to feel weird or unusual.
• the permission and opportunity to be able to discuss at length and in detail the smaller aspects of the ARFID issue, which may or may not be shared by other ARFID sufferers.
• the sense of belonging to a group of like-minded people.

Two things that stood out to me in the ARFID sufferer’s support groups.

1. They really are very supportive. Whilst many in the groups may think of themselves as socially impaired in real life, in the groups, they collectively demonstrate exceptional social values. Most are more articulate than is normal for forums, with low use of profanity and high use of social graces.
2. No one expects anyone to be different from who they are. Essentially, the recurring subtext of the forums is, “it is OK to be you.” It is regrettable that for many young people with ARFID, the message that they receive from their families and treatment providers is, “it isn’t OK to be you, we require you to change.”