Arfid?

Hi, I have a diagnosis of ARFID. I got that after being diagnosed as autistic. It was important for me because I had been misdiagnosed with anorexia nervosa which was very damaging. It never really fit   but I was not believed that the weight loss was unintentional- the misdiagnosis caused a lot of issues. Only since I have had the autism diagnosis, have I started to make real progress for the first time. For me my issues around food are closely related to being autistic- I have IBS and digestive issues which are exacerbated by stress but I used to mainly blame the food which resulted in very limited diet at times. I love routine too and can get super stuck with a few foods and also have some sensory issues around food plus find it stressful and hard to eat around people or in loud environments.

What you describe does sound like it could be ARFID, which is very common in autistic people. There are a few things to consider with how you move forward. I guess the first question is whether a diagnosis of ARFID would be helpful- the understanding of ARFID amongst clinicians is often quite low, so there is a risk that you could end up with a misdiagnosis of another eating disorder which could be very unhelpful. Even if you did get an ARFID diagnosis there may not be any support available- in my case they essentially said- ok you have ARFID we don’t treat that. And that was it- I didn’t care much that there wasn’t support as by then I had an amazing dietitian supporting me and had really shifted my focus to learning anxiety/ stress management skills. And I had such a bad experience previously with the eating disorder service . For me it was just about getting the anorexia nervosa diagnosis removed. 
I know that in some areas they are starting to put in place treatment for ARFID through NHS - I would encourage you to find out before seeking a diagnosis- and don’t just rely on the GP to find out because my GP was actually very shocked that they didn’t provide support for ARFID- she hadn’t know. 
the other thing to keep in mind is that once you have an eating disorder diagnosis on your record it can make it harder to access other services- i was referred for IBS dietitians to help with digestive issues but then when they saw the eating disorder service referral they refused to see me. I even had to fight to be able to keep my CBT place- luckily the cousellor I saw agreed I would be better off with CBT for stress management  and talked to her manager . So there is a real risk that accessing other services (which are possibly going to be more helpful) could be harder. 

I can highly recommend my dietitian who has a lot of experience working with autistic people and takes a highly individual approach- she’s been an amazing support for me and not just with food. But it is sadly expensive- my university helped fund some sessions so I am very lucky. If you want I can pass on her details? 

also there is a book on ARFID in adults that you might find useful- it explains what arfid is and has questionnaires to give an indication whether you might meet the criteria then it gives concrete exercises and strategies you can try.https://www.amazon.co.uk/Picky-Eaters-Recovery-Book-Restrictive/dp/1108796176/ref=mp_s_a_1_2?crid=1C3JT125E6MTS&keywords=arfid+avoidant+restrictive+food+intake+disorder+in+adults+the+picky+eaters+recovery+book&qid=1686848399&sprefix=arfid+avoidant+restrictive+food+intake+disorder+in+adults+the+picky+eaters+recovery+book%2Caps%2C98&sr=8-2 This book is also one which is recommended by Beat and it seems quite evidence based. 

you could also consider ringing Beat or checking their website- I rang them and they sent some more resources and are able to advise. https://www.beateatingdisorders.org.uk/get-information-and-support/get-help-for-myself/i-need-support-now/helplines/

I am not sure if any of this is helpful- I am also happy to share some more of my personal experiences if that helps- feel free to message me directly! 

Hi, I also just want to say that these things can improve! Only a few months ago I was only eating eggs, 1 brand of whole grain roll. Apples and Carrot. Nothing else. And always in exact same order and amounts. And I’ve been through other phases where I only ate a handful of things. Now a few months later I am able to have things I never thought I could- I cook every meal, i have chicken, beef, prawn, egg, tofu paired with lots of options of carbs (wraps, quinoa, rice etc). Even some sauces, pasta and ravioli, and more variety in fruit and veg and can even tolerate some garlic and onion which I used to really struggle with due to IBS- I never thought I could expand my diet so much without huge digestive issues. I still struggle with some things and have to be careful to not get stuck on eating same meals/ snacks and eating socially or in a restaurant is still not really something I can do. It really helped me to know that I was autistic and to better understand why I was struggling and to just be kinder to myself.

I also found that it got easier to try new things (and even a bit fun) once I got going. 

I also have an autistic friend who had a very restrictive diet due to sensory issues but he now also has expanded this a lot.

Basically I just wanted to say that it is possible to expand diet, even if at the moment it may seem unobtainable. 

and it is also give and take and about priorities - as long as diet is reasonably nutritional, it’s not end of world if it is not the most diverse.
same with social eating. There may be some situations that are just ok to avoid- I recently made myself sit  with my coworkers at lunch- i’ve done it twice now snd I realised I just really hate it. I like the people I work with but I find these group situations with small talk very exhausting and i also don’t like to take such a big break at a set time... i decided going for lunch with my coworkers is just not something I will do regularly as i will otherwise need a break after my lunch just to recuperate from it. I do wish though I could enjoy having s meal or going to a restaurant with friends or family... but I think that might come in future. 

It also probably helps to pick one thing to focus on (eg. variety or social aspect etc). I usually do best with big changes to my diet (as when i make tiny changes it still stresses me out a lot but doesn’t seem worth it and is still to similar to the pattern I am stuck to so I end up just going back to it.) but I think baby steps can work well for people too. I also do best with spontaneously adding something new- because then i have less time to get nervous. At the beginning I had issues even buying new foods... there was this real resistance and anxiety and then I start questioning- what worked best for me is to just grab what catches my eye in the supermarket (within reason). Or if i was thinking about a certain food, i would make sure to buy that - then for me the less pressure I put on myself the better it works- step 1 is to buy new food, ans then i would tell myself- no problem if i don’t want to try it- worst case I freeze it so but then often I would end up being curious and would eventually give it a go (again with no pressure. Try it but no pressure to finish it or have a lot)

sorry if this is completely unhelpful- it’s highly individual and what works for one person may not work for someone else.

It’s trial and error- but most important is to be kind to yourself and take your time. And celebrate the successes.

Hi, I also just want to say that these things can improve! Only a few months ago I was only eating eggs, 1 brand of whole grain roll. Apples and Carrot. Nothing else. And always in exact same order and amounts. And I’ve been through other phases where I only ate a handful of things. Now a few months later I am able to have things I never thought I could- I cook every meal, i have chicken, beef, prawn, egg, tofu paired with lots of options of carbs (wraps, quinoa, rice etc). Even some sauces, pasta and ravioli, and more variety in fruit and veg and can even tolerate some garlic and onion which I used to really struggle with due to IBS- I never thought I could expand my diet so much without huge digestive issues. I still struggle with some things and have to be careful to not get stuck on eating same meals/ snacks and eating socially or in a restaurant is still not really something I can do. It really helped me to know that I was autistic and to better understand why I was struggling and to just be kinder to myself.

I also found that it got easier to try new things (and even a bit fun) once I got going. 

I also have an autistic friend who had a very restrictive diet due to sensory issues but he now also has expanded this a lot.

Basically I just wanted to say that it is possible to expand diet, even if at the moment it may seem unobtainable. 

and it is also give and take and about priorities - as long as diet is reasonably nutritional, it’s not end of world if it is not the most diverse.
same with social eating. There may be some situations that are just ok to avoid- I recently made myself sit  with my coworkers at lunch- i’ve done it twice now snd I realised I just really hate it. I like the people I work with but I find these group situations with small talk very exhausting and i also don’t like to take such a big break at a set time... i decided going for lunch with my coworkers is just not something I will do regularly as i will otherwise need a break after my lunch just to recuperate from it. I do wish though I could enjoy having s meal or going to a restaurant with friends or family... but I think that might come in future. 

It also probably helps to pick one thing to focus on (eg. variety or social aspect etc). I usually do best with big changes to my diet (as when i make tiny changes it still stresses me out a lot but doesn’t seem worth it and is still to similar to the pattern I am stuck to so I end up just going back to it.) but I think baby steps can work well for people too. I also do best with spontaneously adding something new- because then i have less time to get nervous. At the beginning I had issues even buying new foods... there was this real resistance and anxiety and then I start questioning- what worked best for me is to just grab what catches my eye in the supermarket (within reason). Or if i was thinking about a certain food, i would make sure to buy that - then for me the less pressure I put on myself the better it works- step 1 is to buy new food, ans then i would tell myself- no problem if i don’t want to try it- worst case I freeze it so but then often I would end up being curious and would eventually give it a go (again with no pressure. Try it but no pressure to finish it or have a lot)

sorry if this is completely unhelpful- it’s highly individual and what works for one person may not work for someone else.

It’s trial and error- but most important is to be kind to yourself and take your time. And celebrate the successes.

You can do it! Maybe trying to include things you used to like is a good place to start ? Or if there is anything you’ve always wanted to try?  You can do it- it might take time but I am sure you will be able to make some changes :) 

Glad that things have improved for you- that’s great. And thank you, I hope I can improve to the point I can bring back some foods I used to like back into my diet- even if it was still considered restrictive then. I realise that my diet might not ever be ‘perfect’ because of sensory issues but rather focus on what’s best for my situation