My daughter only eats pizza. AMA

[IThinkILikeThisLittleLight]

She has ARFID

Posting to give some insight into what life with ARFID is like

At the same time however i wonder if ARFID is like a type of autism, especially with it lasting so long into adulthood and people with it 9/10 having autism. DD9 is not autistic

it’s not a type of autism it’s a co-morbid of autism and in my sons case it was overwhelmingly caused by sensory issue. However it’s very interesting that the few things he did eat were always guaranteed to look, smell and taste the same each time he’d have it. People who are on the spectrum don’t like change and by only eating the same few foods from particular manufacturers or the likes of McDonalds you can almost guarantee the item won’t change on a day to day to basis.

That must be very difficult, I'd imagine it can get mentally exhausting.
The human body and mind fascinate me, it's just so complex how they work so differently for many people.

I follow this account who is doing really well

www.instagram.com/myarfidlife?igsh=MXAxY29zZXZ3bDVwMg==

To be honest I get it
If you bite into a grape it might squirt juice or not, it might be sweet or bitter, it could have hidden pips in or soft bits or hard bits
If you bite into a Pringle, they taste exactly the same, every time

It is. Extremely. And the sameness is important too

For example I can eat chicken nuggets from McDonald’s, but I can’t eat them from anywhere else.

Chips is usually a safe option anywhere I go, so there’s usually that at least.

Really respect all the parents dealing with this - it sounds incredibly difficult.

I get frustrated with my 20 year old who is still annoyingly fussy but it's nothing at all like this.

Hi OP,

I'm sorry you're going through this.

My question is, what are her energy levels like? Can she concentrate in lessons at school, for example?

Also, has the limited diet impacted her physical/mental development that you are aware of?

How do her siblings feel about it, particularly in terms of the restrictions it puts on their lives (limited holidays, eating out as a family etc)? You sound like such an amazing, supportive mum btw, so level headed and rational about what is obviously a complex and difficult issue. Also so happy to read that her friends are supportive, she is lucky to have them and you!

Sorry OP. Didn’t mean to hijack a bit there but you always get people saying children will outgrow fussiness. It’s not fussiness. It’s a genuine condition that I still suffer from at 35

One of the first books ever written about ARFID before it actually had a name was called Can’t Eat, Won’t Eat? and it was one of the best books I’ve ever read over the 33 years I’ve been mum to my son. It’s probably still available to buy and it’s from the perspective of contributors who were on the spectrum and explained what was going on food wise with them. One young woman said she couldn’t eat crisps because the noise they made when trying them was like explosions going off in her head.

No question but just to say this must be really hard for you and her. I hope that in time she's able to introduce other foods and if not I hope you are able to manage it as best you can. Stay strong

Is she small for her age ?

Probably plain things like bread, potato, rice?

Anything plain and easy to replicate each time.

Safe foods vary massively, it's not always convenience food.

One child's safe food in our group is smoked salmon.

Feel sorry for that mums wallet 😅

I appreciate reading about it from an adults perspective!

It’s interesting that the foodstuffs she gravitates towards are not particularly healthy quite a few are UPFs. I wonder why that would feel safer than other types of food. And you wouldn’t think the texture of chips or waffles or pancakes would be safer than anything else.

She does struggle with energy, she loves to sleep.

She struggles hugely with school and I often wonder how much is ASD, how much is the other stuff she has going on and how much is down to her eating habits.

Oh I do have a question actually - how is she with handling food that she's not expected to eat? Like, would she help prepare a meal for her family that's not one of her safe foods if she knew she wasn't expected to eat it?

DH's cousin had an extremely restrictive diet growing up. He ate cheese and tomato pizza (one brand only) or pasta with tomato sauce (one brand only). No Arfid diagnosis as it was sa few decades ago, but something changed for him in his mid to late 20s and his diet slowly changed. He's still quite a beige eater and avoids any new foods or strong flavours or spice. He isn't autistic either. But I strongly suspect he'd have received an Arfid diagnosis had it been better understood. He would have starved himself if the preferred foods weren't available. He ate nothing else for 25yrs. The changes coincided with marriage and raising his own children but I'm not sure how the two link.

Right and why would convenience food not be suspect?

I guess they just ate peas and potatoes.

I’m really pleased she doesn’t get judged and has a lovely friendship group.
As this is AMA; do you think it would be the same if she was overweight? I’m glad it’s not the case but it just made me curious.
(if it’s not an appropriate question please report me, I was just thinking about how weight is one of the things society feels it can still ‘judge’ about people)

I don't have ARFIS but I am autistic myself and I can 100% understand why it would feel safter to eat a pancake than a chicken breast. It feels startlingly obvious to me but maybe that's because I might share some of those characteristics on a much lower level.

Because they're easily replicated and always taste the same, with the same texture.

Blueberries can be soft, hard, juicy, sweet or sour and yet they all look the same on the outside and come from the same tub. A Birdseye chicken dipper will be the same regardless of what packet you get it from.

No.

In fact she doesn't do any cooking at school either in DT.

The other day she did come up whilst I was making a curry and she took the spatula and stirred the food for a while.

She does make her own pizzas and stuff.

I'm not sure how she will navigate that in adulthood

It's so much uncertainty

My son was born into a home where all meals were prepared from fresh ingredients everyday. He ate everything and it was all homemade. Over a couple of years as his autism worsened or took hold of him he gradually dropped foods one by one, or he’d eat the same meal for weeks on end - until he got to the stage he was living on fresh air and desperation meant we then let him have McDonalds for eg.

when he reached his teen years his mental health deteriorated and he was given further dx of Tourette’s, Epilepsy and Bi-Polar Disorder. The medication he was given improved his sensory issues no end and his diet improved. As did his need for sameness and routine. He still has a very limited diet but he can eat and enjoy the same three home cooked meals served in rotation along with 5 portion of fruit and veg a day - which is nothing compared to the amount he rest of us eat but for him is an absolutely remarkable achievement.

I hope all of the above goes some way to helping you understand what ARFID is and that your cowardly and loaded question says more about you than it does about anyone else here.

I want to know where all these mcdonalds are that make the fries the same all the time! Ours are sometimes anaemic looking and luke warm, and other time's crispy and hot