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Autistic son refusing food for a week, what should we do?

154 replies

Peanutgurgle · 28/07/2026 16:13

Our Autistic/adhd son went from eating to eating nothing at all a week ago. He was initially drinking just water. We took him to the GP and he was then referred to ED. Blood was sugar was extremely low but they discharged him on the basis that he was to drink three glasses of apple juice a day and allow us to do his blood sugar once a day. He was also referred to CAMHS crisis team. He wasn’t referred to Eating Disorder Clinic. He is also clearly very depressed.

We are now 7days on from initial food refusal. He is being seen by Crisis nurse on thursday afternoon. We were intending on taking him back to ED last night but he stuffed two mouthfuls of stale bread into his mouth and insisted he was going to start eating and that he was now hungry. He managed a a slice of sweet potatoes and two cherry tomatoes last night. Then two mouthfuls of stale bread this morning. He won’t let me do his blood sugar and he won’t drink apple juice as he is insistent that he is now eating so doesn’t need to.

I am at a loss. His calorie intake is clearly very low. I have no way of monitoring him. What should we do? Thank you for reading and any advice.

OP posts:
Iloveshihtzus · 21/09/2026 15:40

I have just found your post OP. I have been through this with my son. PM me and we can discuss. We have come through but - early days but I hope we are there. Many false starts. I want to give you hope.

Mummyoflittledragon · 21/09/2026 17:15

Thanks for coming back to update us. It’s brilliant that you were able to access the Maudsley privately and your ds has regained the weight. It is very common for anxiety to take hold a year before the eating disorder, so this is something, which will need addressing when he is ready.

If he is eating a decent amount of proteins, fats, carbs, fruit / vegetables and fibre, that will be really great for his mental health and physical wellbeing. However, with his anxiety, behaviours and disordered eating, I would be vigilant as I would think him to be at risk of relapse.

As for his behaviours, it sounds as if these may stem from OCD. It is very common to get OCD when you’re in recovery. And it may well be that he needs to put on more weight. The starting point (presuming there was no disordered behaviour prior) plus 10% isn’t uncommon.

If you are able, I would advise you to talk to the Maudsley consultant yourself for advice on how to tackle the ongoing issues. If you’d prefer to talk to someone else, there are details on the resources thread of people to contact. Dieticians and eating disorder coaches.

We use a very experienced coach for dd and she’s taught me everything I know about ED. She worked in ED for 20 years (in patient) and over 10 years as a coach for mental health and ED, so would be able to help you to address your ds’s behaviours. If you’re interested she’s https://share.google/R1Q5fpGF3VIuvlYYT (this brings you to information on Flourish holistic coaching, Preston btw). She works with dh and me, not dd. Rather like your ds, she wouldn’t engage. We don’t live locally. It’s all done on zoom.

PrizedPickledPopcorn · 21/09/2026 17:31

Nothing helpful to add, just offering a message of solidarity. 💐

Foolish1984 · 21/09/2026 18:41

Peanutgurgle · 21/09/2026 15:34

Sorry. Coming back to update. Mummyoflittledragon he lost 10kg in 2 weeks. We referred staff to the MEED guidelines so many times it was ridiculous. Still no clearer as the why the ED clinic wouldn’t see him. He has been seen privately now by an ED consultant at Maudsley who said ED is a definite component alongside OCD, depression, autistic burnout and early psychosis. I will write a complaint to my trust when I have the energy.

He is now under regular CAMHS though I’m not sure how long for, as he won’t engage with any therapy or meds. They are trying but he is very stuck.

So he now eats food he prepares. Not at regular times but enough that he has regained all of the weight he lost. It is still incredibly disordered and he will only drink from one bottle. He won’t accept any input from anyone on what to eat. I have left a good common sense nutrition book lying around. I think he is probably meeting most nutritional bases.

He is still terrified of sleep. Hasn’t been in a bed since all this started. Won’t go in his bedroom at all now or upstairs in our house or even in rooms other than the kitchen and living room. He still won’t access any tech, even tv. Has a brick phone he will communicate with my Mum and Dad on but that’s it. Hygiene is still a big issue. Won’t use anything artificial eg soap or deodorant but also won’t accept natural alternatives. Remains entirely socially isolated.

He won’t talk to us about he why’s, only about current affairs, science, economics. But definitely not feelings. It feels quite bleak but out of the adrenaline fuelled acute state and now quite chronic.

It sounds like he could benefit from being an inpatient in a long term mental health ward - just temporarily - to help get him stable and functioning. It does sound like, with the best will in the world, that your home (like anyone else’s!) is not equipped to best meet his needs. Neither are you most likely as he sounds like he’s in need of intensive professional help. It must be so so hard for you all.

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