Autism

Introduction

What is it like for me to live with Avoidant Restrictive Food Intake Disorder? How does this eating disorder affect me and my diet? How do I live through life with this disorder?

Read on in this exciting blog post to find out why I have an extreme dislike for textured foods.

What is ARFID (short for Avoidant Restrictive Food Intake Disorder)

Avoidant Restrictive Food Intake Disorder (ARFID) is an eating disorder that is characterised by an extreme reluctance to eat. The reluctance may be out of fear of choking on food, fear of certain textures in the food (which is known as tactile hypersensitivity, and this was a big problem for me), and the anxiety from this is why I have fear of trying out new foods. From infancy, I always had a problem with gaining weight and was extremely underweight. Social interactions and daily tasks were also a highly significant struggle.

Individuals with ARFID are different from “picky eaters” (Wikipedia contributors, 2024), where a picky eater (usually from childhood) may outgrow this habit. In ARFID, these selective eating habits are extreme and lifelong. Because of the extremely self-restricted diet, these individuals often miss out on essential vitamins, minerals and other necessities required for the body to grow and function. A “lack of appetite” being a reason for not eating.

Avoidant restrictive food intake disorder is a relatively new diagnosis that was added to the fifth edition of the DSM-5 in 2013, which extended and replaced the diagnosis of “feeding disorder of infancy or early childhood” that was included in editions prior to the DSM-5. This was also later included in the eleventh reiteration of the International Classification of Diseases (ICD-11) that was published in 2022. (Wikipedia contributors, 2024)

Signs of Avoidant Restrictive Food Intake Disorder

The signs of avoidant restrictive food intake disorder are:

• Extreme reluctance to eat.
• Difficulty in trying out new foods.
• Eating only a very small range of foods (for me, these are hot chips (known as fries in America), hash browns, white bread or chocolate for instance. I also have celiac disease, so all of my foods must also be gluten free (GF))).
• Refusing to eat vegetables/fruits/meats or any type of textured foods.
• Only eating foods with certain types of textures or a very uniform texture (like pureed fruits for example).
• Extreme dislike or fear of most fruits, vegetables or textured foods (neophobia).

Comorbidities with other conditions

ARFID is also a common comorbidity with other medical conditions. For example, the following conditions below often include ARFID:

Autism

In 2023, a study was conducted that revealed that autism and ARFID overlap significantly. About 8.2% to 54.8% of individuals with autism present with avoidant restrictive food intake disorder, and 17% of parents who have children with autism also have ARFID. (Keski-Rahkonen & Ruusunen, 2023)

Due to the sensory issues found in autism, the taste and texture of the food is greatly amplified which is also my experience. What is normally an enjoyable cookie to many is basically like eating gravel to my brain, so I avoid this kind of food and many others as much as possible. From my experience, pureed (liquid) fruit seems to work well for me. I am still learning to expand my diet today (almost 30 years on). 🥭

Obsessive Compulsive Disorder

There is evidence that avoidant restrictive food intake disorder can co-occur with obsessive compulsive disorder. In a research case involving 90 individuals with avoidant restrictive food intake disorder, 6.1% of these individuals also had obsessive compulsive disorder. (Patterson, 2023)

ADHD

Attention deficit hyperactivity disorder (ADHD) can also lead to avoidant restrictive food intake disorder. ADHD is a neurodevelopmental disorder that leads to the individual struggling with attention spans, concentration, impulsivity control, which increases the likelihood of developing an eating disorder like ARFID. Individuals with ADHD are 4 times more likely to have an eating disorder like ARFID than neurotypical individuals. (Eating Disorder Hope, 2023)

How does ARFID affect my diet?

In earlier times, I had a diet that fit the criteria of avoidant restrictive food intake disorder. My diet has since been expanded upon to include 1 fruit (blueberries, bananas and mango), vegetables (tomato paste, finely chopped onions, butternut pumpkin soup, mixed garlic, potato in the form of hot chips) and meats (chicken & minced lamb, duck pate, scrambled eggs + flaxseed meal hidden in the food), but I still have difficulty coping with eating anything textured.

An example of how far I went to limit my diet was that I used to eat nothing but smooth peanut butter sandwiches (which I still enjoy), and I only ever drank Coke and chocolate milk, until my early 20s. 🥜🧈 I would happily enjoy this meal for breakfast/lunch/dinner/tea every day. I would still do this, however I am learning to increase my food repertoire through being willing to have a taste (1 teaspoon) of new foods & textures. With this method slowly I am adding new foods to my diet. (It’s a long journey!) 😆

The picture below shows a sample of how limited an individual’s diet could be with Avoidant Food Restrictive Intake Disorder.

Can avoidant restrictive food intake disorder be cured?

Although avoidant restrictive food intake disorder can be successfully recovered from with the correct treatment and ongoing support (Walden Behavioral Care LLC, 2022), to state it can be “forever cured” would be ambitious.

From my experience, the disorder can be managed by slowly introducing textured food or by making the fruit/vegetables smooth and not crunchy, although this may vary from individual to individual. Here’s a an example of how I have managed my avoidant restrictive food intake disorder that I have found that works for me.

Dietary strategies for managing avoidant restrictive food intake disorder

These are strategies that I have had some success with below. However, these strategies may not work for every individual.

Strategy 1: Puree the fruits and vegetables

Pureeing fruits and vegetables is a good strategy in my experience for managing ARFID, because much of the original texture will disappear. As I have tactile hypersensitivity in the mouth, pureeing food allows for a more uniform liquid that still contains the original vitamins and minerals.

With pureeing, you can help mitigate the fear of texture in the mouth for the individual. If using seedy fruits, (e.g strawberries, raspberries, watermelons) try to remove the seeds first or strain the puree to smooth out the texture. This can also be applied to vegetables. Another strategy is to puree fruits and vegetables together for a sweeter taste if preferred. 🍒

This process may need to be done over time to gradually adjust to the texture changes. Another idea would be to dilute the pureed fruit and vegetables from undiluted form.

After some time, slowly reintroduce less diluted versions of these drinks to get the individual used to the taste and texture of the pureed fruits and vegetables. By gradually expanding the variety of fruits and vegetables, you will also have expanded the individual’s dietary nutrition.

Example shown below:

The above video clip shows an example of fruits in a pureed or liquid form.

Strategy 2: Introduce fruits and vegetables gradually

This strategy will take much longer, and your level of success may vary from individual to individual. With encouragement and perseverance, this approach will succeed for most individuals. Once this has been achieved, increasing the serving size can start. The next step would be to begin eating the fruits and vegetables gradually in their original textures with small portion sizes, gradually increasing to a regular portion size.

Never try to rush this process, as it can cause distress and cause the individual’s fears of these foods to intensify. Instead encourage the individual throughout the process to complete the meal. 😊

How I live with Avoidant Restrictive Food Intake Disorder

You might also be asking: “How do you live with this disorder?”. Read on to find out.

Avoidant restrictive food intake disorder makes eating outside the home extremely difficult unless it has my favourite foods. I find being a guest in other’s homes difficult with ARFID due to the social expectation to eat the food I am served, regardless if the texture is compatible with ARFID, due to this condition. Many people think I’m being difficult, but this is really ARFID, because the condition causes an intense amount of irritability due to fear when I am expected to eat a food I find difficult to process. This is a sensory issue, not a choice.

ARFID can result in a phobia of taste and texture – this is a food-based form of neophobia. Neophobia is the fear of new things or changes. (Wikipedia contributors, 2024)

My main carer will cook a healthy meal for me to eat which is an adult-sized portion. I am served scrambled eggs which I like as a nutritional alternative to solid meat, and I have gradually progressed since eating only scrambled eggs (for meat) to chewy chicken, which is now enjoyable to some degree for me. Due to my extreme reluctance, I usually leave foods with difficult textures for me, for the dog to enjoy. 🐶

Avoidant restrictive food intake disorder makes eating healthily a struggle for me, and it is very real! 😆

Princess Lilli Lilac

Although Princess Lilli Lilac doesn’t have anything much to do in the context of avoidant restrictive food intake disorder, she does help to keep me calm and relaxed. We have been inseparable since the day we first got her in 2011, and we love her very much.

Conclusion

I hope you have learnt a lot about avoidant food restrictive intake disorder (ARFID), and how to manage it. This post has shown how the disorder impacts my life. If you would like to share any of your experiences with ARFID, please write in the comments section near the end of this post! I look forward to reading them. See you on the next blog post! 🗞

Disclaimer: This information is from my experience with avoidant restrictive food intake disorder (ARFID), and is not to be taken as medical advice. If you think you or anyone else may have ARFID, seek proper advice & diagnosis from a qualified professional.

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References

Keski-Rahkonen, A., & Ruusunen, A. (2023). Avoidant-restrictive food intake disorder and autism: epidemiology, etiology, complications, treatment, and outcome. Current Opinion in Psychiatry, 36(6), 438–442. https://doi.org/10.1097/YCO.0000000000000896

Patterson, E. (2023, March 21). Food aversion & ocd. Within Health. https://withinhealth.com/learn/articles/food-aversion-and-ocd

Wikipedia contributors. (2024, July 27). Avoidant/restrictive food intake disorder. In Wikipedia, The Free Encyclopedia. Retrieved 05:50, August 3, 2024, from https://en.wikipedia.org/w/index.php?title=Avoidant/restrictive_food_intake_disorder&oldid=1236906318

Eating Disorder Hope. (2023, April 6). Connections between adhd & avoidant/restrictive food intake disorder. https://www.eatingdisorderhope.com/blog/connections-adhd-avoidantrestrictive-food-intake-disorder

Wikipedia contributors. (2024, August 4). Neophobia. In Wikipedia, The Free Encyclopedia. Retrieved 00:42, August 23, 2024, from https://en.wikipedia.org/w/index.php?title=Neophobia&oldid=1238577424

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