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.

Thanks Lougle. I know. It’s all terrifying. Trying to remain calm whilst watching your child starve themselves to death.

I slept with him this morning. We all had a bag packed for hospital this morning. He came down, filled a bowl with yogurt and fruit and ate it and drank a glass of water. It’s like he knows if he makes it a non emergency situation it pushes it all down the road. I have explained that he must have three meals and 2 snacks a day with me or at least try and he needs to trust me to provide them. He starts trying to negotiate. I am calling GP today for emergency referral to Eating Disorder clinic and we have CAMHS crisis appt tomorrow.

@Peanutgurgle absolutely terrifying. A lot of us here understand it a lot more than we would care to.

I am glad he has eaten, but as you say it’s not enough. The GP must refer you today and the ED team have to see you within a week. Do you know his weight?

We know how lonely this is, I’m glad you have posted here so you are getting some support.

It sounds very much like it could be ARFID or similar.

as hard as it is I would try to remove all pressure and see how that helps. Don’t put in place minimum amounts to eat or mention food at all. Have it available but leave it to him, sometimes the pressure to eat can make it impossible to do so as hard as it is.

Thanks for the update - I was thinking about you all. I hope you get something sorted today for all your sakes. Please keep us posted. I've got everything crossed for you 🤞

I think it will really help to have someone else involved. It is so, so, difficult when you're the parent and also are trying to enforce this.

I'm not suggesting this for now but I realised that my autistic girl can't really tell if she's hungry. She can't seem to feel what state her blood sugar's in and gets extremely "hangry" especially when her routine is disturbed on holidays etc. I have been trying a Libre 2 monitor with her (you can buy them on Amazon - no prescription needed). She likes science and has been enjoying looking at her glucose readings.

I realised she is very reliant on "11am, break time, buy a steak bake from the canteen" rather than "I am hungry".

DH (also autistic) can't tell when he's thirsty...

Part of my autism is a serious aversion to food, I can go up to 3 weeks. I can't stand different textures, flavours etc and if I force it I just become physically sick. Eventually worked out stick to same so I rarely move from cheese sandwiches and mashed potatoes and milk. When I go to family and friends they know I won't eat so never force the issue like they did years ago which sent me into mega stress mode for long periods of time. The Dr prescribed special milkshake drinks when it's bad. I will never walk into a bakery,cafe of shop and look at food and go wow that looks delicious like normal people and pick something...it literally does not bother me..aslong as I stick to my very simple options I'm fine...the worst thing anyone can say is what do you fancy and give me a variety of meals they would like to make me, my head goes in a spin and panic mode and switches off completely to food

I wish when kids were diagnosed parents got info and support with this. It's such a common issue.

I know of two young people who were only referred for the autism assessment AFTER receiving ED treatment.

Take all the help you can from hospital and professionals while he will let you as I’m
a year down the line and she’s not gone near one, it’s been a nightmare. I’ve been too soft and pandered I think, eating or not make him go as this will turn into cat and mouse quickly. I let her do her own Tesco click and collect which helps, as she eats what she’s picked. She wants to move out when she’s 18 in two months but I basically put it straight to her the other day she’s going nowhere on the shit diet and scary low bmi she has and it seems to have triggered an increase. You’re too early a stage for that type of incentivising though no doubt as it’s early crisis. Being left alone seemed to help too, as much as it goes against my instincts. It’s a tough gig op, good luck

Also, the most important thing is to find and resolve the trigger. For my dd it was chronic stress of a court case, she stopped eating altogether when she was finally cited as a witness. Now the case is done I see her improving a bit. Can you ID anything?

He won’t let us weigh him. But he was already very tall and slim with no reserves.

Thank you Pearl97. Yes very isolating. The impact on the entire family is monumental.

Sirzy I really don’t think ARFID. I know quite alit about it and it just doesn’t ring true for him. We have tried the completely taking pressure off and it does nothing but allow him to continue unchallenged. His behaviours generally had changed in the last year and I had assumed Autistic burnout so all pressure on every area of his life had been removed. It’s interesting in that as soon as I give the pressure of potential hospital admission it’s what causes him to eat.

Phineyj I think the introception will be playing a part and hence the need to insist on the regular meals/snacks and make it a habit that we just do.

Justmesimply Yes it does seem to be that actually not giving him the choice is the helpful thing. No negotiations. Just I am making this decision for you. I was engaging too heavily with him being part of the decision making as we are always taught as parents to give choices.

Interestingly I think we have been too focused on the what is causing this, to the detriment of right now we just need to get him ingesting some calories.

I’m really aware that he will be 18 next year.

I have just started reading Anorexia and Other Eating Disorders. Just on the search for immediate, practical advice which is available to us right now.

Sending love, strength and support. One of my DDs stopped eating almost entirely, but she would sometimes consume protein drinks. It's so bloody scary. As you say, focus on getting calories in, any calories. We found a ND-informed therapist to work with her on her thinking about food (she is ASD but doesn't have communication difficulties), and a really really supportive paediatric community dietician (whose daughter is also ASD so really gets it). DD is also 17. She is not out of the woods yet, but those scary days when she would barely eat anything have passed for the moment. In any event, solidarity.

Yeah if I had my time again I’d definitely force the issue more and make her eat. Hindsight!

That sounds really tough @DeQuin .

You were lucky to find a community paediatric dietician (was that NHS?). I asked our GP to refer us last November which he did immediately. We were offered ONE "dietary sufficiency" appointment which was then cancelled. By June, she'd still not been seen so I had the idea to ask the OT she sees at school for a recommendation of an ND informed nutritionist. She did have a recommendation, which has really helped. Although of course she is private. It costs a fortune trying to backfill all the lacking public services.

I agree OP that just getting the calories in at this stage is more important so he can think rationally. Or it's like trying to drive a car with no fuel in it (or a flat battery).

Thank you for reminding me of the word "interoception". I have a sensory OT report on DD mentioning it multiple times but no-one really applied it to food, just movement.

If the yoghurt and fruit is all he eats I would still take him to A&E. See the MARSIPAN guidance PP posted.

I don't know if it would be helpful for your son but my autistic DD is a rule follower so when a health care professional laid out how often she had to eat, she did listen, even though she ignored me.

Ideas to try. Stop the meals and snacks for now (it could be overwhelming) - put out his safe foods or anything that’s completely non threatening (like sucrose/glucose pastilles) in the open available to him without „coming for a meal” and in bite sized pieces. It is likely at this point he is not feeling hunger at all. Tiny pieces should lower the anxiety barrier but also make it easier for you to say: „just have one” every time you see him. You say ice cream is a „no” have you tried ice cubes? Initially to up his water intake but if he likes them you could freeze juice- many ND people like the feel of crunching ice and similarly people who are iron deficient (which he likely is). Is he taste/smell sensory seeking or avoidant normally? If he’s seeking you could try: baking a cake he likes, opening a chocolate right next to him or a pack of pringles - depending on his preferences - the smell might trigger his hunger. Does he say anything about why he doesn’t eat/drink? If he can when faced with going into hospital and NG tube then it’s likely not sensory - the aversion to the hospital treatment is higher than the block with eating - so what is it? You say he’s been depressed and getting worse is he trying to starve himself- I think the whys are still important because they tell you which way to approach things. But, personally, I’d go with tinies piece of something non triggering every time you see him, I’d be tempted to try with glucose tablets or boiled sweets (high sugar load in tiny package)- once you get over the not eating at all then I’d start looking at protein etc.

Sorry, it's 3 + 3. It's grim but it must be done.

I think the snacks could be e.g. a glass of full fat milk? That's my anorexic friend's go-to.

Yes, DD has tried all sorts of things because the kindly nutritionist suggested them. It really un-blocked the situation. And frankly she trusts her phone more than me saying "you are hangry...'

If you can afford it get private help from a psychologist/psychiatrist as eating disorders services might turn you away if ds behaviour pattern doesn’t match a known eating disorder
Let your son choose the professional he would like to speak to as there will be more chance of success.
Leave the house to do an outing that your son will enjoy and include his favourite restaurant in the outing.
If there is an anxiety /depression element ds may need meds to get through it.
Try and work out what is driving this. Is he unhappy at school?
if things don’t improve go to A and E as even once you get to hospital they may try eating plans for several days before resorting to Ng tube.

@Peanutgurgle you are getting good advice, but I know it can be a very overwhelming. For now, hour by hour. Day by day.

if he’s eating less than 500 calories a day, it’s straight to a and e. Eating something to pacify you isn’t enough.

This is so hard. You need to ask the GP for an urgent referral to ED team.

@Peanutgurgle some basic things that might help:

• This isn't a choice. DS isn't being difficult or stubborn. Something has triggered this and he isn't in control
• The less he eats, the bigger the restriction will become (which is why 3+3 is so important)

There are different approaches. ED units tend to look at a person's former diet and try to resume that with an all in approach. So if they don't eat the whole meal they have to have the supplement drink even if they only left a forkful. I didn't do that.

I focused on what she would eat, then maximised the hell out of the calorie density. But that only works if calories aren't in focus - DD has ASD and LD so calories were never the issue.

For example, she would eat pancakes. So for breakfast I made pancakes that had 1500 calories, so it didn't matter if she didn't manage to eat much for the rest of the day.

The restriction will partly be cognitive and psychological, but also the stomach shrinks, so in the early days getting high calorie low volume food in is key.

Butter, cream, full fat milk, etc., are necessary not only for brain recovery but energy density.

Thank you Lougle. I can’t really tell if calories are the thing or not. I don’t think they were initially but now he is using as a justification.

Pancakes is a good idea. They have always been a reliable for him and easy to pimp up to higher calorie and nutrient content.

Spoke with CAMHS who tried to delay appt as they had double booked. I stressed that it was urgent. They insisted the GP need to refer to ED clinic, which the GP has now done but warned they may not accept.

I feel confident now that if we go down to 500 calories in a day we go straight in. It feels tangible to explain this to DS too. That a couple of mouthfuls isn’t going to keep him out.

On the chance our referral to ED clinic gets refused, does anyone know of any good private clinics in the Surrey/Hampshire region?

And many thanks to all of you. It is intensely reassuring to get advice and support from seasoned veterans.

Residential Eating Disorder Treatment - Priory https://share.google/tDjxJ5JiQ8xlvky9F my anorexic friend received good treatment here. It's not suitable for your son as 18+ but it says they will signpost you to suitable facilities so might be worth calling as I bet they all know each other.

P.S. we've had success with pancakes too. DH makes them with banana and Biscoff spread. I don't know the calories but the jar has over 2,000 calories in, bloody hell, good thing I'm gluten intolerant!!!

It may be the similarity that make them palatable for DD. She certainly complains they're wrong when I make them.