Back in 2017, the private thoughts of a little girl with autism who struggled with eating went viral. At the time, Naomi’s mother Miriam Gwynne, a blogger on autism issues, had exhausted all routes to improve her daughter’s severely limited diet and sensory avoidance with food.
Miriam writes that after struggling with food ‘from the moment she was weaned’, by the age of 8 years Naomi ‘only ate a tiny amount of foods’, had a BMI of less than 14 and was ‘dangerously underweight’, with the professionals engaging with her discussing feeding tube options.
A pivotal moment happened for both mother and daughter when the editor of an autism awareness site that Miriam contributed to suggested that Naomi herself write a piece. Naomi was asked to explain why she didn’t always like to eat, and what caused her to not like certain foods. Her response resonated with hundreds of thousands of readers across the world; with her mother who said that it ‘radically changed’ how she fed her daughter; and with therapists who re-committed to ‘listening, really listening’ to the individual they were trying to help.
These are Naomi’s own words, first published by AutismAwareness, and republished here, in full, with kind permission from her mother:
“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 sometimes 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.”
Naomi’s mother Miriam said after she had ‘read and reread’ her daughter’s words she changed how she approached eating with her daughter: “I took meals to where she was. I let her eat in whatever way she felt comfortable. I made sure food never touched. I stopped nagging her to eat. I bought and cooked what she liked the way she liked it. We stopped eating at the kitchen table and let her eat while watching Youtube or TV.”
Seven months after Naomi’s insightful words went global and the ensuing changes introduced by her mother, Miriam reported that her daughter was on the 4th percentile (previously 0.74 percentile) on the chart for her weight and has increased the number of food items she eats from 4 to 20.
“My daughter still has an eating disorder. She still has autism. But we are making progress,” writes Miriam; progress which she attributes to that editor who first asked Naomi to articulate her experience of her eating issues in her own words.