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.

Would he take drinks instead? Switch him from solids to Protein shakes (he may like chocolate flavour) or get him on PediaSure? Does he like ice lollies? Would he take a smoothie frozen into lolly form?

This must be so hard for you. 💐

I was going to suggest drinks. Milkshakes or anything like that.

Is he able to tell you if he’s refusing to eat due to pain? Has he got any safe foods? If so, I’d probably buy those and leave them in his room and remove the pressure to eat.

I’m so sorry. This must be so tough.

Was there a trigger that you’re aware of? Change of routine, school holidays for example. Or any sickness/ illness?
Is his diet usually restricted (safe beige carbohydrates etc) brand or texture specific?
Agree with PPs try milkshakes, smoothies etc if he will tolerate and have preferred food around no pressure.
If he’s depressed it may be his way of taking back some control.
Hope you get some help soon.

How old is your ds @Peanutgurgle ?

I have no experience with serious ED but some experience with food avoidance due to autism.

You say he is depressed, has anything happened recently? How do his summer holiday weeks look like, does he have any contact with anyone, any plans with friends or family?

Is there anything he is interested in and if yes, could you stat at the end. For example if he loves ocean related subjects (hypothetically) you could visit an aquarium (or similar low-pressure activity based on something he is very interested in) and if that peaks his interest it will relax him perhaps enough to get a favourite save food? Or get a small aquarium!

Alternatively if you don't want to venture out, could you buy an ice cream machine and make ice cream together, he can chose flavour and all that goes in?

If he has favourite characters, try and find foods with packaging that feature these characters (e.g Star Wars, Disney, etc.)

If you have a Ninja you could dehydrate fruit as an experiment and see if he is interested in that. Go and collect blackberries and make a cake or jam with it.

There can be a 100 and 1 reasons for him to avoid food out of the blue. Is he self conscious suddenly and doesn't want to be seen eating? Try and eat in the dark or with the TV on and no one else in the room.

These strategies may be fully unsuitable but in the past we have overcome autistic "stubbornness" (for lack of a better word) with some of these. Try and take the edge off, and reduce his fight or flight experience if applicable.

Sorry initial title said he was 17 years only but the suggested title took it out. He won’t eat or drink anything other than water. Nothing. He won’t countenance nutri drinks, ice cream anything. He won’t engage with anything, even watching TV with me. Even things he usually loves he won’t . I suppose what I am after is practical tips for now. We have a whole load of stuff to work through with CAMHS but that will take a lot of time. His mental health has been deteriorating for about a year and there is masses to unpick. I know that this is a physical manifestation of all of that.

But what do I do now? I can’t physically make him eat or drink when he won’t. Do I take him back to ED? Do I wait for the CAMHS appt on thursday?

I think it is shocking that there is no support available. I wonder if you can self refer to any support services. I wonder if there is a forum with ideas from ED or ASD of where you could go for help. I would be thinking about going back to GP or even hospital. The squeaky wheel gets the oil.

Is he in education? College or 6th form? If yes, does this cause him exam stress and anxiety? Is he on anti anxiety or depression meds?

Sounds like he has tied himself in knots poor boy.

Wishing you and him well.

Yes I think our only option is back to hospital. Earliest review GP would offer is mid august. Yes it is shocking. Feel utterly lost trying to navigate it.

Back to hospital. He can be hospitalised and if necessary Sectioned.

Not on any meds. Won’t take any. In a specialist 6th form. I think many many things are playing into it. But we have removed all pressures completely.

Thank you SummerSally

How much is he drinking? This sounds like quite an acute situation especially as he is unable to comply with the advice you have already been given. I don’t think it would be unreasonable to take him back to ED. Is he fainting or feeling dizzy? Can he climb the stairs? If no to either of these questions then he needs seeing urgently. I’m sorry you’re going through this.

Poor boy

just checking that it has been explained to him what will happen to him if he continues not eating or eating very little, ie he would starve to death so he may have to become inpatient in hospital

Yes he understands what will happen to his body. He is quite scientific and bright. He knows he might have to be hospitalised and have NG feed. He was told that at last visit. He is wandering around and denies feeling faint. He says he is drinking water but won’t even do that in front of me.

I'm sorry but I think you have to take him back to hospital especially if you're not sure how much he's drinking as well.Support for mental health illnesses in this country is shocking. Wish you all the best

Op i have no advice but wish you and your son quick answers and recovery from the situation he is in. I hope you have friends and family support.

I'm so sorry your boy and you are going through this.

I think he needs fairly swift medical intervention.

Name changed as this may be quite outing for me.

Is there a chance he's constipated? I once stopped eating for 6 weeks because of impaction and fully lost interest in doing anything. I barely left my bed for a month.

I ended up having to have it removed under general anaesthetic, and once it was over I pretty much went back to eating normally right away. I do still get very panicky about constipation though.

It started as just a normal hard poo that tore me slightly when I tried to go unsuccessful. So every attempt after that hurt more and more and I got too scared to try and started fighting the sensation to go - almost like an overnight phobia. As it got more intense I had to concentrate so much on stopping my body from trying to push on it's own that I stopped being able to do any activity and hid away in bed for weeks. I was too scared to tell anyone what was happening as I felt so stupid for getting into that state when I was a mostly functioning mid twenties person.

Not constipated prior to this. Obvs no bowel movements now as nothing has gone in.

I am really sorry this is happening.

This happened to someone I know with a similar aged DC who then required 6 months of inpatient treatment (in another country though).

Something to bear in mind is that when he turns 18 you will have less sway regarding treatment.

I'm sure you've already tried the Beat helpline? It would be good to know what inpatient facilities there are in your broad geographical area and what the waiting lists tend to be.

Seconding this.
Seems to be a harm to himself. Can take him to A&E until they get round to admitting him…& @ least it’ll be air conditioned.

I think you're asking what to do right now when you have no idea if he's been drinking in the past 24 hours or so? You can go a good few days without food if you're drinking enough.

Is your gut feeling that he is drinking water without you seeing? If so and he's walking around and (mostly) functioning them I'd stay at home for now, especially if he's going to find hospital stressful.

But if you think he's lying about what he's drinking I'd go straight back.

In the meantime I'd be phoning the camhs crisis line regularly to see if they'll see him earlier. Keep annoying them. Assuming you have a way of contacting them of course.

I would return to hospital personally, although I know that it is difficult. After a period without food there is a danger of re-feeding syndrome, and input from a dietician would be helpful in terms of avoiding this. A dietician should be able to see him on the ward.

I’m so sorry you’re going through this, and I hope help and support is available to you.

I think this guidance may have been superceded now, but it is what we used to use: https://www.stgeorges.nhs.uk/wp-content/uploads/2019/01/Junior-MARSIPAN-Risk-Assessment-Framework.pdf. If he is still eating less than 500 calories a day I would say he is at risk and needs to be seen at A&E rather than waiting for Thursday. I hope things improve soon.

OP, have you spoken to the Beat helpline? It's open at the moment.

https://www.beateatingdisorders.org.uk/get-information-and-support/get-help-for-myself/i-need-support-now/helplines/?