Does anyone else have ARFID?

[Eranzer]

I'm diagnosed OCD, have been since childhood (assuming this is linked), not been to a doctor about my eating (or lack of) but I've done some Googling and I believe the term is ARFID. It's always been 'a thing' for me, just amped up massively the last few years. My list of safe foods is getting smaller and smaller. I'm determined to beat it this year. It's reached the point of interfering with my relationship (DP worried and frustrated over every meal I won't touch) and my children are now noticing it, which is my final straw.

Anyone else out there with experience of this?

Sorry to drop something else in but many autistic people also present with OCD and ARFID. Could the underlying cause have been missed?

Have you had good quality, thorough therapy with a specialist clinical psychologist?

My son does. He’s 10. Some advice that I was given which I tells myself frequently is this - don’t necessarily make it an aim to expand the list of safe foods. Make it an aim for the list to stay the same, and any new food introductions (even if it’s just being around those foods/tolerating them in a plate/licking them/touching them) is a huge bonus.

I feel for you, it’s hard and takes a huge amount of organising and effort.

I have arfid. But despite asking for help from my GP and therapist all I was offered was a nutritionist. I know what foods I should be eating. The problem is that I just physically can't eat them.
I wish there was a pill or something that would help.

It's hard being branded "fussy" when actually I would love to just sit and have a meal with my family and not feel like an outsider. It's affected me my whole life since childhood. Could never accept an invitation to dinner at a friends house etc.
So whilst I don't have advice I can say you're not alone.

@ratatattatt thanks for the reply.
Honestly, I do think autism is possible. It's been suggested to me by family members and friends that have experience with it.

I saw a lot of therapists when I was younger due to my OCD. It's now generally well controlled. I see the ARFID side of it as a 'spin off', I suppose, and haven't yet seen anybody about it. I typically attempt to fix things myself before getting worked up about seeing professionals!

@WellTidy I'm so sorry your son has it too, it's really frustrating! ☹️
That's good advice. I honestly don't know what I'd eat or drink if my list shrank any further!

My son has ARFID, he's now 27, he's had it pretty much his whole life. He was diagnosed with autism before he was three and was already refusing food then. He eats only two things, a certain type of beefburger and Cadbury's Dairy Milk. He's had lots and lots of interventions and support over the years but none of them has made any difference to what he will eat. It's complicated by him not recognising if he's hungry so he will happily starve rather than try any alternative.

Not me but DS has this. There is a FB page which you may find helpful. It's called ARFID support for parents & carers.

DS also appears to have some OCD. Really sensitive to things being wet/dirty. People touching his stuff. He otherwise presents as pretty normal so not sure he has autism tbh

I've not come across anyone saying they have been cured or cured their child.

People can be very judgmental about eating & get worked up about it even if it doesn't really affect them. DS friends parents have luckily always been tolerant. They just make him something he will eat or just accept he will eat when he gets home.

Lots of intolerant people on MN though who seem to find it annoying.

My son had it. For years he would only eat gluten free cheese and tomato pizza, gluten free bread and jam and buckwheat pancakes which we hid everything we could in. He’d also eat walkers plain crisps.

He went to a special school with an excellent first teacher. That teacher sat with him every lunch time. He started with one crisp broken into four pieces. He put a tiny piece of baked bean sauce on the crisp. When son was accepting that he put one baked bean between two crisps. When son was accepting that one tiny piece of mashed potato on the edge of the crisp. Then between two crisps. At some stage son started eating waffles. Then bit of mashed potato with a pea on it. Then mashed potatoes with a tiny bit of casserole. Then suddenly he was eating casserole. It took getting on for a year - but it was the first bit that was slow. Once he could tolerate mashed potato alone things moved quickly.

He now eats a wide range of foods including all good types. Loves fruit & veg. He’s an adult now.

In my son’s case it was sensory (he still smells everything he eats) - but doing it in tiny stages worked for him. I think he just needed to be desensitised to textures (he ate normally until about the age of 2 - food restriction accompanied a regression).

Is it possible that ocd rather than being “treated” or improved was actually transferred? I know this is a very common problem with ocd. If this could be a possibility then could you seek the same treatment for the current presentation as was successful for the ocd?

My daughter - 15
Still not a formal diagnosis but has been referred and hopefully will get an assessment and help
Hers is triggered by anxiety and will not eat if expecting an event (as minimal as grandparents’s visit) but when relaxed has a good variety of safe foods and will try new things

My colleague is involved with this www.arfidawarenessuk.org/ which has lots of help

Me. I'm also autistic. Misdiagnosed with anorexia when I was younger and subjected to all kinds of ignorant nonsense by insanely misogynistic psychiatrists. My earliest memories include school dinners, wherein we were not allowed out to play unless we ate the rice pudding. So I wasn't allowed out to play. I sat there for the entire hour, at the age of five, across from a school dinner lady, without talking or moving. And still no-one twigged I was autistic.

Anyway, I do fine. My diet is very very repetetive but balanced enough. I'm "underweight" but I always have been, and I don't really believe in BMI because I menstruate like clockwork and am not unduly cold, tired, or anything else. I do take a daily multivitamin with iron. I would say I'm a bit better than I used to be in that there are certain places I'll eat out and know what to get. My biggest thing is textures. If I had to eat something that is lumpy and wet I would literally vomit.

As with autism, the biggest problem is other people, specfically other women. They just can't help themselves commenting, observing, implying you have anorexia or bulimia, asking if you're allergic, or suggesting you 'just try' something they consider a treat. Why? Why do they care so much? Its a neurotypical mystery. I'm interested why you consider you have to 'beat it'. I can't beat it any more than I can 'beat' autism. Wouldn't it be a better goal to have a diet that is healthy and you feel comfortable eating, and learn to tell other people to keep their opinions to themselves?

I believe my 18 year old son has/had some form of it.

I can pin point the start of it af the weaning stage - he ate two different types of meal and would refuse anything else completely. He has eaten the same breakfast and lunch for the last 17 years - the health visitor told me to just let him get in with it and he will get bored of the same food and ask for something different - still waiting!

Then as he got older his "safe" list was about 10 items. Sitting down to eat as a family was tricky as he just saw food as a chore and not something to enjoy. When he goes out with mates now to eat he has a bowl of chips and nothing else but they just accept that that is the way he is - going for a curry would be his idea of hell!

I'm not sure he will get better but it has evolved over the years. I've seen people with ARFID on drips and being tube fed - thankfully he has never got this bad and gets by on his safe food.

@greenbirdsong I'm so sorry that you're suffering with this also. It really is one of the most frustrating things I've ever experienced ☹️❤️