The reason I don’t like to eat

My beautiful blue eyed girl has recently been diagnosed with an eating disorder. Three years ago she was diagnosed with autism. Last week I sat with her and we talked. This is all her own words. She asked me to share so others understand.

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Sometimes bedtime is the best time. It is the one time people leave me alone. They stop asking things like ‘are you hungry Naomi?’, ‘would you like a drink Naomi?‘, ”are you sure you don’t want a snack?’
Why do people eat and drink so much anyway? I have things I much prefer doing like watching you tube and playing my own games with my toys.
How am I meant to eat or drink when I am doing something else?
Sometimes people even want me to change rooms to eat.
School do that.
Why?
I am comfortable and happy and then you make me move and my brain is thinking about where am I going, did I leave anything I might need, what if things have changed when I get back? What is someone touches anything?
Those things scare me.
You want me to move to somewhere, sit down and eat what you have made.
But I didn’t ask for it. I did not know it was happening. No-one told me I would smell different things, hear different voices and touch different stuff and now you want me to even taste things?
It is too much so I just freeze.
I can hear you but everything is fuzzy.
I am so scared. I am scared that people are looking at me. I am scared everyone is going to talk to me. I feel sick.

Why do people eat funny things? People eat things with bright colours and I can’t understand that. My body is a pinky beige colour. That is a safe colour. Like a light brown sort of colour. If my skin is ok then things that colour are ok too.

You want to know why I still sometimes don’t eat things that are my skin colour? Well it is just wrong. And my brain is all upset about food. When I play with my toys they look the same, they stay the same and they act the same. Sometimes I eat something and it tastes nice, it is the right colour and it fells nice and soft in my mouth. But then some days I eat what you tell me is the same and it isn’t the same. It is not the way I saw it the time I liked it. It does not have the same softness and I get upset. You ruined it. Why do people do that? I order my toys in lines so when I look at them they look the same. I feel safe like that. But you don’t let me do that with food. If I put it in order it makes sense. I want to know it is ‘right’ and I need to check it. What if it is wrong and it goes inside me? That would hurt me.

That is why I have to have one thing then another. My brain tells me ‘this is nugget skins’ and I remember what they taste like. You damage it if it has sauce or potatoes on. Then it is not nugget skins but some weird thing my brain does not know. So all nuggets are dangerous. And I get scared again.

I like soft. When I chew sometimes I get a little tiny bit to swallow and sometime a bigger bit. That means it tastes different and it does not make sense. Nibbling is safer. My teeth don’t want to touch stuff because then it tastes of teeth not what it should taste like. Teeth is not a nice flavour. You know that because no one makes anything teeth flavour do they?

I feel sick sometimes. Mummy says it is hunger but I don’t get it. My tummy makes me feel sick and people say it needs food when it already wants to get rid of what is in there so why add more? That does not make sense to me.

I don’t think people like me sometimes. They shout at me and keep making me eat. I get scared and sad, Please leave me alone. I like it best when mummy puts things I like near me when I am playing so my toys can look at it and tell me it is ok. I know my world is ok then.

All day long people eat eat eat. And I get scared scared and more scared. I eat at breakfast and then you want me to eat again for lunch or snack at school, then dinner, then supper.

I want it to end some days. That’s why bedtime is the best for me.

Mummy asked me if I dream about food when I sleep. No way! I dream about trains. Thomas tank engine is brilliant. He never eats and I like that!

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This article first appeared here

 

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32 thoughts on “The reason I don’t like to eat

  1. Thank you so much for this! My 2.5 year old son was just diagnosed with SPD and speech delays, he used to be an amazing eater and would devour anything you put in front of him and then one day it was like a switch was flipped and I can’t hardly get him to eat anything (except slim jims) I have just learned to let him be and I will just put random foods out in little bowls around the house and let him choose if he wants something but I refuse to force him.

    Liked by 1 person

    • Same with my guy just stopped eating at age 2. Only drinks milk/chocolate milk (tons), and I put snacks, dry cereal, granola bars in bowels for him to eat when he is hungry. He us now just about 4. I also have s son with spd who is 11 and gave up most foods as an infant only accepting about 5 different things now. They are growing and healthy so I don’t fight them.

      Liked by 1 person

  2. My brother has severe autism. But he just has unfavorite food – uneatable on his opinion (not too much)& we use gluten-free diet (it shorted quantity of meltdowns very much) – all our real difficulties. He chooses time when he wants to eat. He can take food from fridge – pan or saucepan (but it’s necessary to warm, otherwise he’ll eat it cold). I just should prepare some vegetable salad. He’s non-verbal, so I can’t know his thoughts and negotiate with him or explain him smth. If he was like Naomi, i’d try to make 1 hungry day, but she’d know where food is kept and could take it any time body asks.
    Why do we eat so much – we DO feel need it. Yes, people can feel a bit similarly if they’re hungry and if they’re overfed

    Like

  3. Please thank your beautiful girl for sharing this. As someone with insufficient understanding of autism (but personal experience of an eating disorder) this has been eye opening and hugely informative. Sending you both love.

    Liked by 1 person

  4. thankyou for sharing this .My son 7yrs doesn’t eat much food and he is very thin I worry about his weight all the time.He has ASD ADHD and OCD .He thinks theres germs on his food and won’t eat it at school and won’t try new foods ethier.:(

    Liked by 1 person

  5. This is amazing, it explains so much, my son is 10 diagnosed a year ago (finally) ASD and SPD. He will only eat sweet pickled gherkins and icecream at the moment, thank you so much for this, and thank you to your daughter.

    Liked by 1 person

  6. Hi
    I would love to meet you. I have an eating disorder and understand about textures. Also have just completed 2 years of my learning disability nursing degree and have understanding of both aspects of your struggles. Would love to meet you and see if I can help In anyway x

    Liked by 1 person

  7. We have 3 kids, our youngest is 5 and has recently been diagnosed with ASD with demand avoidance and ARFID (Avoidant Restricted Food Intake Disorder). Our middle one is 10 and has Aspergers.
    Your article is a lovely description of our daughters feeding issues. Thank you. It really blessed us! We are praying for you…

    Liked by 1 person

  8. Thank you so much for sharing your beautiful blue eyed girl, she is amazing due to her post I understand better why my son refuses sometimes to eat. He can refuse things that he use to eat them before, now it make sense to me. Lots of love to both of you.

    Liked by 1 person

  9. My son is only 2 and has a severe speech delay. He does eat but usually only things that are beige like rice cakes, potatoes, chicken. He doesn’t like soft or smooth things like yoghurt etc. He has 7 food allergies. He has been diagnosed SPD but not ASD, well at least not yet. Thank you to your daughter for sharing this as it resonates a lot and makes a lot of sense. Hugs to you for being brave and wonderful ❤

    Liked by 1 person

  10. A really important perspective. For similar do read The Reason I Jump. Which equally explains the way the world makes sense from the perspective of a boy with autism, and why us ‘neurotypicals’ are still not really getting it.

    Liked by 1 person

  11. Thank you for sharing this! It really taught me a lot, I do not have kids but have friends with children and some of them have eating issues. This was really helpful. Your daughter is beautiful.

    Liked by 1 person

  12. Thank you for posting this. I have a ten year old daughter who isn’t autistic but does have an eating disorder, this might explain some of her thinking behind why she has eaten the same foods for years on end. It will help me to deal with her in s different way now. x

    Liked by 1 person

  13. eating is a very big issue with autism/aspergers .biggest problem is in years to come it will

    give a lot more health issues.it has my son .try dora pasta ..mr.tumble pasta.

    i have aspergers .my blog http;//mark-kent.webs.com

    Like

  14. Thank you so much for sharing your ideas about eating. I found it most interesting & it made me think. I hope school gets better at providing a safe and happy place for you to be.
    Sending happy smiles 😁 to you, your family & lastly those fantastic sounding toys!!
    Emma

    Liked by 1 person

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