“Walt has five safe foods and he would literally starve rather than eat anything else. He eats chips from McDonalds. We’ve tried frozen fries from a supermarket and putting them in a McDonalds box, using McDonalds sauce, but it doesn’t work. McDonalds chips are exactly the same every single time – cooked to the same temperature, the same taste and texture.

He'll have a ham sandwich, salt and vinegar chipsticks from Sainsbury, Pom Bears and Haribos. We’ve started to introduce sausages and he has tried them, but that’s taken a year. He will only drink water, blackcurrant juice or peppermint tea.

We can’t eat our food in front of him because he really hates it, so we have to secret eat in the kitchen or at different times. It can be stressful. At first we thought it was just a sensory thing, the sound of us crunching. But then he would look at our plates and retch. 

He goes to Columbia Grange, a specialist school in Washington, and they’re on it with allergies and eating disorders. They’ll try him with a different fruit or veg each week but it’s no big deal if he doesn’t have it.

The RVI offered us putting a peg in his stomach if he starts losing weight, feeding him through a little tube. It sounds terrifying to me, but I know people manage to do it. 

McDonalds is just round the corner from us, thank goodness. I don’t want him to be eating it every day, but I pick my battles and as long as he’s eating, I’m hoping he will bored and move onto something else. 

He has lost weight in the last six months but not enough for them to be concerned. It’s another barrier to getting diagnosed, because I think they wait for you to be in a bad position. But the food he does eat is fattening food so we’re in a Catch 22 situation.

It’s really frustrating. You have to plan ahead wherever you go – we have to know where the nearest McDonalds is or take his safe foods with us. You can’t do anything spontaneous or be late for something, you always have to think ahead. It’s draining and difficult from a mental health point of view.

Some of our family don’t understand it, so we only leave him with my parents. Some of them are quite old-fashioned and say ‘he’ll eat when he’s hungry’ – but he wouldn’t.

We were referred by our autism consultant to an eating disorder team, and they rang me for an hour-long chat about what Walt eats. But they haven’t met him or seen how he behaves.

They said that because he’s got so much going on, he probably won’t get diagnosed. Even if he does, it doesn’t mean we can do anything with it. There’s no easy fix but they would support with techniques and strategies.

If we don’t get a diagnosis they said they’d refer to a dietician but I’m worried they will try to force foods on him that he’s not going to be able to eat – they’re not going to be a specialist.

Walt is pre-verbal with limited understanding so I can’t explain it to him about trying a new food. For a stranger to try to do that in an unfamiliar environment would just cause more chaos in our lives.

I wish there was more information, and I wish other people understood. We know what people think of us, they don’t hide it very well. We do what we have to do, at the end of the day. We just have to make sure he eats something.”

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