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

[Peanutgurgle]

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.

I’m so sorry this is happening, it sounds really difficult for you all. If you’re not sure that he’s at least drinking water then you probably have to go back to the hospital and see if they would admit him. I hope that things improve very soon.

You need to return to hospital. It's very a serious situation and he needs to see specialists. Most likely he needs to be admitted. Good luck.

I would go to A&E. I have an autistic DC who had an eating disorder. I was told by the ED team that if they are eating fewer than 500 calories a day it is an emergency admission.

When she was much younger, she refused to eat for almost a week after injuring her tongue. After repeatedly being fobbed off by the GP we took her to A&E and she was admitted after her blood levels showed she had something called metabolic acidosis which can be very dangerous.

He probably won't be sectioned for anorexia unless his BMI is dangerously low. In women/girls it's below 13. Not sure if same for men.

But he might be able to get onto an outpatients programme. Only if he's compliant though. It's really hard as people fall through the cracks.

I would say hospital. Most people with EDs will drink. My DC will not drink when the ED is very strong. If he will not drink or you have reason to think he is not drinking, then regardless of his weight, he needs to be in hospital.

I think you have to go back to A&E. Or perhaps try 111 as it’s outside GP hours and they might suggest something.
My limited knowledge on eating disorders is that even a few days of very restricted eating can have a massive impact on mental processing which can lead to a further spiral so he gets less & less likely to be able to remedy this himself by starting to eat. Plus his autistic so there is likely to have been some trigger but, if he hasn’t been able to explain that until now, he is less likely to be able to.

That sounds so stressful. My autistic son went through similar issues.

We chatted, very gently, about what food does for us - why we need protein, vitamins, fats, carbs for energy, strength and to improve our mood. I'd ask if there were any things in each food group that he thought he might be able to manage. I'd tell him about the foods that boost our mood - pink grapefruit juice, blue cheese, walnuts (most nuts and seeds) and see if he fancied any of these.

He too would eat two mouthfuls and then just stop, so I made those mouthfuls as calorie dense as possible. Banana bread or brownies made with almond flour and lots of eggs. Two mouthfuls of cake have about 4 times the calories of two mouthfuls of bread. I always tossed veg in melted butter, pasta in olive oil, so even if he ate a couple of mouthfuls, they were more calorie dense.

If he can face drinks, try banana milkshake with vanilla protein powder, some liquid multivitamin drops and a tablespoon of cream whizzed up together. Maybe a teaspoon of peanut butter or almond butter too, if he will tolerate it. Give him a small glass of it, not a daunting huge milkshake glass. If he can face soup, stir in some single cream.

Don't force things. But if he does eat a bit, ask if it has helped him feel a bit more alert in any way.

The resistance to medication is tricky, because, ironically, some antidepressants massively increase your appetite. That happened to DS when he finally started on them.

I really feel for you. It is so distressing.

Another thing we had to do was encourage any eating at all. Some fast foods and snacks are designed to trigger the brain to want more. So if there are any UPF which he has liked in the past, which might switch on a brain signal to have anothe rmouthful, buy them. In the case of autistic ARFID at starvation level of seriousness, eating nothing bit cheesy puffs, Mcfries and Mr Whippy icecream for a while is absolutely fine. Just add a multivitamin.

How old is your son? Apologies, I was reading on the run x

Can’t get through to BEATs even on the chat line.

I absolutely fine with him eating anything at all and even the smallest amount. He won’t. Not ice creams, not calorie dense drinks, nothing. Sorry. I’m not saying this to be rude but just to give proper context.
111 useless unfortunately.

You are right to be concerned. I’d not hesitate in using A and E in these circumstances but otherwise you could try calling your GP first thing tomorrow and ask for an urgent same day appointment or try NHS 111. Good luck OP. Sounds really tough and you are right to seek urgent support.

I would liken this to a hunger strike. He’s not hiding it, he’s refusing to do it.
From google
When someone goes on a hunger strike, the body transitions from burning glucose to ketosis, then begins breaking down muscle and vital organ tissue for energy, carrying a severe risk of permanent organ damage or death within 60 to 70 days. 1, 2]
Physiological Stages of a Hunger Strike

• Days 1–3: The body burns remaining glucose reserves. Rapid initial weight loss occurs due to the loss of water and electrolytes. 1, 2]
• Days 3–14 (Ketosis): The liver processes stored body fat for energy. Fat reserves are typically exhausted by the two-week mark. 1, 2]
• Weeks 2–4: The body begins breaking down muscle protein—including skeletal muscles and vital tissues like the heart—leading to severe weakness, vitamin deficiencies (such as thiamine), and neurological or sensory issues. 1, 2]
• Weeks 4+: Profound protein loss compromises bone marrow, immune function, and major organ systems (brain, nerves, kidneys, liver, and heart). Strikers may experience vertigo, hallucinations, and delirium. 1, 2, 3]
• Day 60+ (Critical Phase): Death typically occurs when a person loses 40% to 50% of their pre-strike body weight, usually driven by multi-system organ failure or cardiac arrest. Dehydration without fluid intake can cause fatal kidney failure in just a few days. 1, 2, 3, 4]

Medical and Legal Intervention

• Medical Monitoring: In institutional settings like prisons, medical staff closely monitor vital signs, weight, fluid intake, and mental capacity daily. Resuming eating later also carries the distinct danger of refeeding syndrome, which requires clinical oversight. 1, 2, 3]
• Autonomy vs. Ethics: According to guidelines from groups like the World Medical Association, force-feeding a mentally competent, informed adult who voluntarily refuses food violates bodily autonomy and is considered ethically unacceptable. However, if a striker loses mental capacity or faces imminent death, legal frameworks and medical ethics sometimes clash regarding intervention or palliative comfort care. 1, 2, 3, 4]

I would keep taking him to A&E for your own protection, to document what is going on incase the worst was to happen. With him being autistic and 17 (still a child? I don’t know if it’s under 16 or 18) maybe there is grounds to supersede guidelines before he becomes unconscious and then they could help essentially. GP isn’t going to do much. Really feel for you.

Mental health a&e is the way to go, unfortunately I was on first name terms with many of the staff due to my autistic dd, many an hour with her on drips due to refusing to eat … we each time got her eating again but that was a full time job of coaxing, was 20 the last time it happened and nothing since, 6 years later so much improvement. So take him in, gp’s I found couldn’t help and camhs aren’t really out of hours

You could call the CAMHS crisis line initially if you don’t want A&E. I have found them helpful for DS when he was under 18, but of course it depends if you can get through and who you get to speak to. Otherwise I’d take him back to A&E. Is he going to the toilet to pee do you know?

Mental health a&e hun if you have one.
Otherwise 111 option 2.
Very best of luck x

Yes he is urinating. Dark but there. Unfortunately our CAMHS crisis line is a bit rubbish. I called today.
He won’t go to ED this evening. Point blank refusal. Has said he will come with us tomorrow morning.

@Peanutgurgle this just be so stressful for you all. Refusing to go when you are so food deprived is very normal. Remember is brain etc os starved of the calories that it needs to function, It is common to say and do things that people usually wouldn’t when they are eating.

I would call an ambulance if he refuses tomorrow. Is he close to being 18?

Sendong strength. It is so hard when you don’t feel supported. I think at the moment Beat etc will definitely say A and E immediately.

I don’t know how helpful this is as I’m sure you’ve tried everything but when we had similar with a much younger child, we realised that parental pressure / anxiety wasn’t helping so we just left open bowls of snacks around the home and she ended up picking on them when she wasn’t being observed. Sorry if this is something you’ve already tried, hope it all works out for him x

At one point or another the choice will be out if his hands. He will either collapse or be so weak he won’t be able to refuse anymore.
I hope you get some help and support when that time comes.

Thank you Pearl97. Yes that is our plan now.

How is he this morning? How are you?

will you have him sectioned?

@Peanutgurgle the key is not his BMI or weight, but the change in weight. Rapid weight loss at any weight is dangerous.

MARSIPAN (Management of Really Sick Patients with Anorexia Nervosa) has risk categories. Your DS has a few known red category items:

• Calorie intake 400-600 per day (he's eating less than this)
• Fluid refusal (it's not clear that he's drinking)
• Reduced urine output (his urine is concentrated. It's likely that he's also breaking down muscle).

When people restrict their food intake, chemical changes happen in the brain. DD1's Paediatrician described it as a Cachectic Cycle:

Won't eat, Don't eat, Can't eat

He's not in control. You need to get him to A&E and stay there until they listen.

It took me over 6 months to get DD1's situation recognised, and in the end I phoned the GP and said "She's feeling dizzy when she stands, her heart rate is 143, and her toes are purple...just checking that's ok." The GP couldn't say it was ok (I'd been being bounced from GP to dietician) and sent us to hospital. She was then admitted for 9 days before being discharged to CAMHS and their intensive home service.