Autism Mental Health

My Eating Disorder

I have an eating disorder.

No, it’s not anorexia, or bulimia, or binge eating disorder. You’ve probably never heard of it. It’s called avoidant/restrictive food intake disorder. ARFID for short. Also known as Selective Eating Disorder. It was first recognized in the DSM-5, the most recent edition, which came out in 2013.

ARFID makes me unwillingly restrict the types of food I can eat, based on the food’s appearance, smell, taste, texture, brand, presentation, or a past negative experience with that particular food. You could say I’m ‘a picky eater’. You could also think of it as a food phobia. It has nothing to do with body image and everything to do with anxiety and sensory sensitivity.

My main diet is pizza, fries, chicken nuggets, bread (with toppings), and mac & cheese. I can eat carrots, broccoli, and cucumber, but only if it’s prepared the way I’m used to.

ARFID impacts every part of my daily life, but especially my social life. I can’t just have dinner at someone else’s house. I can’t go to just any restaurant. I can’t have different kinds of food touching each other on the plate. I have to carefully plan out my day so that I’m never stuck somewhere without safe foods. When friends or family want to eat with me, it has to be on my terms. Usually, that means we go to an Italian restaurant or at least somewhere I’ve been before.

It may seem like ‘just a mental thing’, but I physically cannot eat most food. My taste buds reject it, and I can’t make my mouth chew and swallow without gagging and spitting the food out.
What makes it even more complicated is that I also have a vomiting phobia. I barely try anything new because I’m afraid my taste buds will send a  ‘nope‘ signal to my brain, which makes me throw up just to get everything out. I don’t even have to throw up that often — it might even be years since the last time — but the thought of it makes me scared enough that I won’t try anything risky.

I’ve had ARFID almost my entire life. For me this is all I know, but my mom remembers a time from toddlerhood where I would eat a more varied diet. Over the years, it’s only gotten worse. And before you ask, yes, my parents have tried everything in their power to get me to finish my healthy evening meals, but this is different from just being difficult. It wasn’t until I found out that it was a very real disorder called ARFID, and other people experienced it too, that we realized force-feeding never would have helped me.

People’s perceptions

Before I got my autism diagnosis, I often got nasty reactions from ignorant people around me. They said I was spoiled for only eating the ‘expensive crackers’. They said I was being unnecessarily difficult. They said my mom didn’t raise me properly. They said my parents should’ve force-fed me more.
It’s very similar to the shit parents of autistic people get for just doing their best in a very difficult situation. For the record: my parents dealt with it in the best possible way, in my opinion. They tried and tried and tried, in lots of different ways, but at some point you have to accept that it might be doing more harm than good, and there’s something more serious going on.

Traveling with ARFID

Traveling abroad is not fun for me. The past few years, I’ve only really traveled to England, and only because I was able to bring some safe foods in my suitcase with me. I can’t go abroad for longer than a week, because my safe food will go bad or run out, and there isn’t much I can buy there.
During my last trip to England, I brought smeerkaas (spreadable cheese), which I planned to spread onto a baguette I’d buy there. I had access to an oven, so I didn’t have to buy a fresh baguette every day and could instead just do all grocery shopping in one go. For dinner, we went to Italian restaurants or McDonalds.

I feel awful when my eating disorder controls the plan for everyone involved, but luckily I have supportive friends who efficiently save their ‘unhealthy food days’ for when they hang out with me.

Physical symptoms

You can’t eat the way I eat for very long without experiencing physical symptoms. I have chronic stomach pain, which was recently diagnosed as Irritable Bowel Syndrome (IBS). This could be a result of my eating habits, but it could also be a coincidence since it’s a very common comorbid disorder with autism.

I am also always cold. Again, this could be a result of ARFID, but it could also have something to do with sensory sensitivity to temperature. (I’m mostly sensitive to the cold, but I also can’t deal with heat super well. Heat makes me feel uncomfortable and I prefer to stay indoors in the summer.)
In every season except summer I sleep with two to three hot water bottles, a comforter, a cat, two fleece blankets, and thermal underwear under my pyjamas, and sometimes I’m still cold.

Treatment for ARFID

About a year ago, I’d pretty much given up on finding treatment for my eating disorder, because there is simply nothing for just ARFID that is both covered by insurance and not ridiculously far away. Most treatment centers and even eating disorder clinics only treat anorexia, bulimia, and binge eating disorder. There is no evidence-based treatment for ARFID at the moment.

However, after my autism diagnosis, many doors have opened for me. Although most autism-related restrictive eating therapy is focused on children, my future therapists (I’m on a waiting list) assured me they could start working with me on this since it’s a common problem for those with autism, so they have experience with it.

Some people recover entirely, and some improve to the point that their body is at least not falling apart completely. I don’t know yet which category I fall into, and although I hope I’ll someday be able to fully recover, I have a feeling I’m never going to be normal when it comes to food.

If you have any questions about this topic, feel free to send me a message anywhere. Hopefully more people knowing about it will mean there will be more studies done and eventually more treatment available.

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4 Comments

  • Reply
    Tony
    March 15, 2018 at 8:04 PM

    Hi Lauren. Your post here about ARFID and Autism is very informative. As you said, it has only been described in the medical community in the last 5 years and so info and treatments are virtually nonexistent.

    My 10 year old son has all the symptoms you describe here and I have long thought he has ARFID, but now I am sure we need to see where he is on the autism spectrum.
    At 10 yrs, he is an intelligent boy, who is now being hamstrung with the physical and mental manifestations of his condition.

    My biggest worry as his dad is that his weight gain is adding to his problems now by lowering his self esteem, being embarrassed . I believe weight loss is usually the problem but he is gaining fo much.

    Talking about it is more difficult. My wife who has stuggled for years with weight problems feels that telling him to lose weight is potentially another mental hang up which he could do without.

    For example, he needs to go on a school camp for 3 days (2 sleeps) . He has been crying and pleading to us to not send him. He is worried about the food . We have involved the teacher and are coming up with strategies to send safe foods with him.
    But he still feels worried and is unwilling to go on the camp.

    I feel desperately sorry for him. All I can do is love him and accept his condition and hope the find some treatment which may help him soon.

    Thanks for your article.

    Ps. I am also Dutch, I have lived in South Africa and now live in Sydney, Australia.

    Groetjes uit Australie. 🙂

    • Reply
      Lauren
      March 18, 2018 at 3:59 PM

      Hello Tony!

      Thanks for commenting! I think checking to see if your son is on the spectrum is a great idea, since some autistic people don’t display the stereotypical traits of autism, yet are still struggling. It’s very much possible for him to just have ARFID, though, I don’t know if he has any other issues. For me, it’s gotten slightly easier to find help for my eating difficulties now that I have an autism diagnosis. There is a lot out there for autistic kids, but even if he’s not autistic, he could probably benefit from those therapies.

      I’ve always stayed the same weight, but recently I’ve been gaining weight because I haven’t been able to exercise due to depression. For me, it’s important to find a sport that I enjoy doing and to have someone to do it with. I know what ARFID can do to your self-esteem if you gain (too much) weight from it, so I make sure to keep a close eye on what’s happening to my body, and exercising regularly. I used to hate exercise but I’ve discovered rock climbing and running which I very much enjoy! I believe there is a sport out there for everyone, you just have to try out some new things!

      I totally relate to his anxiety about the camp. That sounds like my childhood right there! Sounds like you are doing a great job of managing it for him! I personally also get anxious just eating around people, especially back when I didn’t have a diagnosis yet. Try reassuring him that he will have his safe foods available, and maybe see if the teacher can do something to manage anxiety at the camp itself. What makes him feel okay to eat at home? Does he need a certain environment to eat? Distraction, or eating alone? Try figuring that out and see if you can use those methods at camp as well as at home.

      Your son is very lucky to have such supportive parents! I wish you the best of luck.
      (P.S. May I ask you how you found my blog post?)

  • Reply
    Lydia Reeves
    August 8, 2018 at 7:40 PM

    Hi Lauren, I could have pretty much written this myself. It was only about 10 years ago I found my fussy eating had a name, which has changed over the years but now called ARFID. Last year I was diagnosed ASD at 43 (I had figured out a couple years prior), and it finally explains so much, especially the food issues which I am only just beginning to accept as an unchanging part of my make up. It’s not easy, it never will be and restricts so much of my life but it is pointless to keep fighting against it, which just causes stress and depression. At least having a name and an explanation makes it easier to live with.

    • Reply
      Lauren
      August 9, 2018 at 10:58 AM

      Hi Lydia,
      I’m happy that you finally have a diagnosis! It’s so relieving, isn’t it? Personally, I’m still trying to find ways to treat my ARFID. Even though it stems from my ASD, I think it’s possible to at least eat healthy enough to not be in pain all the time. The deficiencies and chronic stomach pain have become too much for me and I’m desperate to change my diet!

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