ARFID: An interview with an adult with Avoidant/Restrictive Food Intake Disorder

In this blog post, I interview HELEN S. Helen is in her early 50s and has struggled with restrictive eating for much of her life

Background to, and description of my condition:

I have had eating difficulties all my life: from the time I was weaned as a baby and fed solid foods to now, in middle age. For many years I have had great difficulty tolerating a variety of foods based upon their smell, taste and texture. I also have OCD – which manifests in many forms, but mainly as ‘contamination’ fears. I was diagnosed with autism in my 40s. I am currently undergoing therapy for ARFID, which is probably the most helpful treatment I have had to date for my eating difficulties. Being underweight for many years led to me developing many physical health problems – which could have been avoided had I been given appropriate help with eating much earlier in life. The reasons why it took so long for me to access useful treatment include the era when I was born (1960s), misunderstanding of my difficulties and likely misdiagnoses.

As a toddler I could only tolerate bland, soft foods and refused any food other than warm milk, boiled eggs, soft white bread and bananas. My mother’s valiant attempts to introduce me to new foods was met with meltdowns.

When I started school, age 4, I became extremely anxious when in large groups of people and found sitting in a dining room with many other children to eat ‘school lunch’ intolerable. My anxiety led me to reject ALL food that was given to me at school, including the foods that I would eat at home. Sadly, the response of ‘dinner ladies’ and teachers was VERY unhelpful. I was sent to the Headteacher’s office and threatened with ‘the cane’ (a form of punishment permitted in schools in the 1970s…) if I refused to eat my school lunch. This created so much fear within me that I developed a phobia of school itself. Yet, I was a very intelligent child who enjoyed learning and had learnt to read and write even before starting school at age 4 years.

Around the age of 6 I developed emetophobia (a phobia of vomiting). This started after I picked up gastroenteritis, which traumatised me. I fixated on trying to find out how and why people get sick, and when I learnt that hand-washing is important to stop the spread of infections I developed ‘contamination OCD’ which manifested as intrusive thoughts about vomiting, or others vomiting, and was accompanied by repeated hand-washing and avoidance of anyone who I believed to be sick (even when they weren’t sick…). This made tolerating school even more difficult. My mother took me to our family GP who suggested that I was being naughty and feigning illness because I wanted to stay at home with my mother. He threatened me with a ‘nasty injection’ if I didn’t ‘behave myself’ (i.e. attend school and eat at school). That didn’t help me at all.

By age 8, I was significantly underweight. Because the school nurse was concerned about my food refusal in school and my general health it was recommended that I take a packed lunch to school which I would eat alone in an empty classroom while the other children were eating in the dining hall. This worked well. Although I would only eat strawberry jam sandwiches and chocolate biscuits, I did gain weight. I was prescribed vitamin and mineral supplements to counteract my limited diet.  

At age 10-11, when I was starting puberty, I experienced repeated sexual trauma. I didn’t tell my parents (who would have been horrified had they known). My already high levels of anxiety became catastrophic. At this point in time I was a promising child athlete and was engaged in formal athletics training. Because I found this training calming, I started to exercise outside of scheduled training sessions in an obsessional manner. I was too anxious to eat. I didn’t want to lose weight and had no fat phobia or desire for thinness, but my over-exercise and restrictive eating inevitably led to weight loss. I didn’t like this weight loss, both because of the way it made me look, and because my athletic performance declined. However, I was unable to stop either the exercise or the food restriction.

By age 12 I had been diagnosed with Anorexia Nervosa (AN). I had never heard of this illness before and accepted the diagnosis. I didn’t have typical ‘fat phobia’, fear of weight gain, or a desire to lose weight. I was referred to a dietitian and a paediatrician, both of whom I saw weekly with my mother. I wanted to gain weight, but was unable to follow the diet prescribed to me because it included foods that overwhelmed my senses. Therefore, I ate what I felt I could (‘beige foods’: white bread, cheese, pasta, bananas, eggs, milk) – and because I was desperate to get back into my sports, I tried hard to gain weight, and succeeded. By age 14 I was back playing competitive sports and by age 16 I was representing my County in two sports.

From age 14 – 24 my weight was normal and healthy, but other aspects of my life were not so easy for me. I struggled socially due to undiagnosed autism, had unusual, obsessive interests that made my peers think I was ‘odd’ and was suffering PTSD from sexual abuse.

At age 24 I developed extreme anxiety while studying away from home for my PhD. The academic work was no problem, but socially I couldn’t fit in and I felt lonely and isolated. I became too anxious to eat and started to over-exercise to relieve stress. As previously, weight or body image concerns played no role in my urges to restrict food or over-exercise. I lost a lot of weight suddenly and became physically compromised. Although I wanted to go home to stay with my parents to try to get better, my father wouldn’t allow me.

From age 25 – 40 I held down a job, but was significantly underweight and was unable to eat well. I was unable to exercise much, despite the desire to do so. Sport and exercise were important to me because they were an integral part of my identity and things I enjoyed and my life was utterly miserable a lot of the time due to depression. I collapsed physically and was hospitalised due to very low weight and medical instability. This then led to a referral for treatment of AN, a diagnosis I questioned because I my restrictive eating was not motivated by any wish to lose weight, or to be thin; I had no fat phobia and hated my thinness.

While undergoing treatment, I was formally diagnosed with ‘high functioning’ autism and it was concluded that my eating difficulties were linked to general anxiety, OCD/emetophobia and sensory difficulties tolerating the taste and texture of various foods, as well as feelings of fullness [I associate the latter with vomiting so fullness is triggering to my emetophobia]. My diagnosis of AN was removed, which I considered helpful. This was prior to the publication of DSM V and ARFID being recognised in adults.

More recently I have been undergoing treatment for ARFID. The treatment has three main objectives: first, to ensure I consume adequate energy to gain weight and maintain that weight gain; second, to try to overcome feelings of fullness so that I can consume higher volumes of food; third, to gradually introduce foods I struggle to eat into my diet due to taste and texture so that my diet is better balanced.

Since being in treatment I have progressed with all the aforementioned objectives, although not fully. My depression has largely lifted because I am better nourished, and I feel much stronger because I am eating larger volumes of food, a more balanced diet and am also strength training to gain lost muscle mass. I feel more positive than I have done for a long while.


How hard/easy was it to get the correct diagnosis?

It took 45 years; therefore, very difficult. Being misdiagnosed was very difficult because it didn’t help me to improve my diet or health and I found it invalidating that clinicians didn’t believe me when I denied symptoms of AN.


What have been your experiences as an adult with ARFID in terms of being understood by treatment professionals?

Poor, but this is hardly surprising given that ARFID is a new diagnosis. My experience has been that if you restrict food/diet and are underweight, that you are invariably diagnosed with AN and assigned a list of cognitions relating to weight, body image, fat phobia or ‘moral’ eating that do not make sense of your experiences.


What have been the most and least helpful resources and advice in terms of managing ARFID?

I have accessed a few published papers about ARFID, but in the main, the help has come from a therapist knowledgeable in both ARFID and autism.  

What resources do you think are needed but not available currently?

It is important to recognise that even if they look similar superficially (i.e. restrictive eating, food fears, weight loss, anxiety, depression, OCD-like behaviours) that ARFID is different to AN. People with ARFID do not have the same cognitions as people with AN. Recognition also that some people with ARFID also have OCD and/or ASD, which can complicate treatment, due to rigidity of behaviours. More GPs and ED specialists need to be trained to diagnose and/or treat ARFID.


Any advice for parents/family members of a child with ARFID? And does this differ from advice you would give about an adult with AN?

Don’t assume that re-feeding and attainment of a healthy, set point weight will cure the ARFID. The mechanisms of restrictive eating in ARFID are different to those of AN. ARFID is underpinned by sensory sensitivities – to the smell, taste and textures of various foods; to bodily sensations of fullness; to a traumatic event that makes the person earful of eating (e.g. choking, or vomiting after eating per se, or eating specific foods). If the child denies cognitive characteristics of AN, then believe him or her!


Any advice for treatment providers who may experience patients with ARFID?

Don’t try to fit your patient/client to a diagnosis that fits your knowledge or skills. Listen to what they say and refer them if you don’t know how best to treat them. Consider co-morbid autism and/or OCD. Remember that every ED patient/client is an individual and that no two (or more) patients/clients are the same.   

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What do you think?

  1. I’m the parent of a child who was misdiagnosed with anorexia for the first year and a half, until it was finally changed to ARFID, and much of this echoes our experiences as well. I’m so glad to see an increasing awareness of the differences between the illnesses – finally!

    I am particularly curious about the therapy she received to overcome feelings of fullness, since my child still struggles with this tremendously.

  2. Thank you for this, I can identify with much of this, I too suffered from OCD, emetephobia and am diagnosed on the Autism Spectrum. My food difficulties have been life long and this time, ARFID was finally talked about. My complicating factor is that my ARFID did lead on to the development of a severe and enduring ED that was a mixture of Anorexia and Bulimia. I spent a long in and out of successful hospitalisations and treatment attempts. I was finally diagnosed with AS and last year went into what will hopefully be the last ED admission with a unit that was very accommodating to the difficulties that come with AS. Then I came out and began yet another attempt at CBT, this time though things are very different. The right diagnosis, the knowledge of how the AS changes the way that CBT has to be delieverd and the knowledge of ARFID. The ED behaviours have been largely eradicated but my eating was restricted to just a few types, AFFID was finally mentioned. The AN/BN mindset is lessened but the ARFID has proved to be a lot harder to deal with. My food plan is still the same every day and the food types extremely limited but the mindset is now understood by who I see who gets it is nothing to do with weight/ shape etc but is to do with the AS/ ARFID and has changed the CBT. We are working on chaining foods and I am slowly having a tiny bit of variation. I actually feel I am getting somewhere finally. For years I was told I just must not want to recover or was being non-compliant. I felt like such a failure. I feel I am beginning to be understood and I am really grateful.

  3. Thank you so much for sharing your story, Helen (and Tabitha for the interview!!! I am so glad I stumbled across you website this week!!!). I am in a similar situation where I have more similarities to ARFID but being underweight automatically gave me the AN diagnosis and my disorder seen through that lense. I am constantly having to defend myself and the challenges I experience and therefore my treatment has been insufficient and largely made me worse. I am glad that it is being recognized more now as a distinct disorder and they we get our own DSM label – ha ha. I hate labels, but hopefully this will help clinician understand that our thought process are different around the challenges we face eating. Again, thanks so much for sharing. I hate that you have to struggle with this experience as well – but I it is helpful for me to hear about your story as I often feel very alone. I wish you the best of luck in your journey and I hope that your happiness continues to improve. Reading your story has certainly increased my positivity greatly and I can’t thank you enough for that bump in morale. You are a true inspiration!!!

  4. Thank you for this. It mirrors my adult daughter’s distressing experience of being inappropriately labelled and ‘treated’ by MH clinicians. She is on the autistic spectrum and has well documented, lifelong food allergies/intolerances and ASD related food sensory issues (taste, texture, smell). The trigger for her weight loss was her poorly managed depression and I believe she was purposefully (mis)diagnosed with AN because it is easier to section people (under the Mental Health Act) with an AN diagnosis rather than an EDNOS or ARFID one. Her experience was truly horrendous: Just eight weeks after the AN diagnosis, and even though she did not meet the inpatient care pathway criteria (BMI<13 or medically unstable) she was told she would be sectioned under the Mental health Act if she did not accept inpatient treatment; and (even though she was an informal patient who has no history of violence or self harm) she was, without any forewarning or discussion, surreptitiously admitted to an acute medical ward where she was put under 1:1, 24 hour RMN observation and not allowed to leave the ward, a situation she found unbelievably distressing. For 12 days she had no access to fresh air and she was observed at all times: using the toilet, showering, sleeping, and when visitors were present. Her dietary needs were not catered for. Ironically she suffered 'Underfeeding Syndrome' as she lost 4lbs in the first 7 days (having successfully maintained her weight for two months before her admission) and became medically unstable as a direct result. Her BMI fell to its lowest ever level so they inserted an NG Tube to feed her. It was only after she transferred to an out of county hospital (weighing 3lbs less than she had on her admission to the first hospital) with a specialist ED Unit that she gained weight, but still her lifelong dietary needs (dairy free) and ASD related issues were not accommodated: we had to purchase and provide many food items (soya milk, yogurts, custard desserts) directly; and she was even 'sanctioned' by staff for refusing to eat a sandwich with a known allergen (cheese) in. She was treated like an irresponsible child. And we were treated with distain because we were her advocates. They even sought advice about how to remove us from our (potential role) of Nearest Relative (a really important safeguarding role under the MHA). Unbelievable treatment in the 21st century. She self-discharged as soon as she felt safe to do so without being sectioned, and she refused further input from local MH services. During her inpatient treatment she was given an independent ARFID diagnosis from a professional who specialises in working with women who are on the autistic spectrum and who develop eating disorders. The hospital ignored this alternative diagnosis. ED services (in the UK at least) need a complete overhaul. The ignorance and arrogance of the NHS clinicians we encountered was staggering. IMO my daughter suffered emotional abuse from staff because of the trauma she had to go through because of their boot camp mentality and one size fits all approach. Completely unacceptable practice in this day and age. Things have to change.

    • Wow! How traumatic for your daughter and your whole family

      Thank you for sharing this. Stories like this absolutely have to be heard. Things have to change.

  5. Interesting interview. I am a 50 yrs old woman with ARFID. My father had it as does my niece and nephew. Obviously the medical field is very misinformed. For me and my family, it is a sensory sensitvity. We are super tasters to the point that we can taste everything in the food and because of that, it is not pleasurable. It doesn’t taste good. So in turn, I have no desire to eat it, it is that simple. This disorder is not anorexia (perhaps there are rare cases where the diagnoses are mixed), it is not austism, it is not socially dysfunctional people….I really wish the medical field would stop trying to categoriced it. The biggest issue with ARFID is peoples’ misunderstanding which can create anxiety in social situations. Most with ARFID avoid social events where eating may be challenging. We live in a world obsessed with food, let’s face it. We are normal people with selective palettes. We marry, we have children, we live normal lives…society needs to stop the stigma that because we are different we are weird or unhealthy. I am normal weight, I work out 3-4 times a week and at 50, I am pretty healthy. Society should be more concerned with the obsession over food nowadays and how overweight people are. I am glad to see more attention on this issue being brought out as I am hoping it will lead to more understanding on the disorder. Because it is other people’s discrimination against me that affects me the most.

  6. The lack of research into eating disorders is unbelievable. I have been diagnosed with AN by more than one doctor, but they had no explanation as to why my eating problems had nothing to do with body image. To read this, after a lifelong struggle, is such a relief. Now I know other people suffer from the same disorder. I feel whole for the first time. Thank you so much.