The Reasons I Don’t Like to Eat

We asked Naomi, the autistic daughter of blogger Miriam Gwynne, to try to write something for our community that would explain why she doesn’t always like to eat, and what causes her to not like certain foods. These are her words:

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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 prefer doing, like watching YouTube 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 does that. Why? I am comfortable and happy and then they 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 if someone touches something?

Those things scare me.

You want me to move to some place, 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 even want me to 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.

But do 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 feels 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 it. 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 like teeth, not what it should taste like. Teeth is not a nice flavour. You know that because no one makes anything teeth flavor, 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, but 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 the Tank Engine is brilliant. He never eats, and I like that.

The Fear: What Will the Future Bring?

Do you feel it sometimes, the fear?

It can creep up at any time, envelop you in its proverbial black cape, and stay there, making you think and worry, fearful for the future.

I’ve been thinking of this since our daughter turned 13 in May. She received her autism diagnosis at 4.5 years, so she’s been defined by this “label” longer than she hasn’t. Scary, eh?

The last few years have gone by in a flash, and she’s heading into year nine in September. Nine will turn into 10, 10 into 11, and then what?

She’s very lucky to be in the right setting for her. It became very apparent that mainstream wasn’t appropriate for D, and once we’d appealed against a statement rejection and had a successful appeal, we were able to get her into SN school within a term.

It felt a tough decision at the time: Do we “stick” with mainstream, recognising that D was finding it all way too challenging and hope for some sort of qualification at the end of a (angst-ridden) time in mainstream? Or do we go with our hearts and choose an SN school, with its smaller class sizes and its focus on “life skills”? It was an easy decision to make after deliberation—we wanted our daughter to be as happy as she could be, and anything else would be a bonus.

And she is—more than is. We listen with absolute joy as she reads, clap as we watch her class performances, and marvel at the fact that she’s there, on stage, when in mainstream she was too nervous to enter a school hall; too full of anxiety to participate in any activity.

But, we know that in a few short years it will all change; she’ll be too old for school. And then, what’s next?

A college placement in a huge sensory-filled building?

What if it all becomes too much? What if she’s singled out? What if someone suggests something and she says “yes,” as she doesn’t have the confidence to say “no”?

What if the bus to college is late and she starts to walk, with zero road sense? Or gets into a car?

What if there’s a job placement and other people don’t understand and accept her?

What if she’s bullied and is told not to say anything? What if it’s a person she perceives as authority? She wouldn’t say a thing, but just twist herself in knots, tighter and tighter.

What if she doesn’t get a job or college placement? What then?

And my biggest fear of all: How will she cope when we’re no longer around? 

At best, she and T tolerate each other. Would they be able to get on (ish)?

I don’t like to think like that, but nobody is immortal. I’d love to be; to always be there for her.

That’s the fear that keeps me awake sometimes.