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.

@Phineyj yes, NHS paediatric dietician. (We've been before to a different NHS dietician with my other ARFID daughter (DD1) and were significantly less successful that time; but with the DD in question (DD2) we've really lucked out with who we ended up with.)

She also talked a lot about interoception with DD2 again, DD1 is clearly unable to process / understand her own body signals, but it was a useful conversation to have with DD2 who actually has the opposite problem she is hyper aware of everything going on inside her.

As @Airelles suggests might be the case, CAMHS / ED service said they couldn't help us because DD's eating challenges are not "text book" and "she has ASD so it's complicated and we can't help" (not exact words, but that was the drift). It felt very isolating: the message I got was yes, this is complicated and outside anything we have a manual for, so no-one can help and you are on your own -- which is why I wanted to respond to OP. This can feel like you are on your own and it's not clear where to go / what to do next.

@Airelles suggestion of allowing your DS to choose what professionals he works with has also been key for us: I had been suggesting therapy for DD2 for some time, but the one we have ended up working with (££££ eek) was suggested by someone whose advice she really trusts (and who knows someone who worked with her). When I suggested therapy I was met with a brick wall (what does mum know, right?).

Also agree with @Tickingcrocodile DD2 (and DD1 to some extent) are much more likely to do what a healthcare professional says if it is made very explicit (and is something they feel that they can achieve the eat three meals a day plus lots of red meat and green vegetables advice does not land well). It has been the thing that turned it around for DD2 -- she is now working with two professionals she really likes and who she feels get her and she is (to some extent) willing to listen to them and try what they suggest.

And yes yes to A&E if calorie intake doesn't go up.

Please feel you can keep posting here for advice, to share what is happening, or just to moan. The worst thing for me was the isolation. Good luck to both of you x

OP, in the circumstances, could you consider seeking a private appointment this week?

https://www.theeatingdisorderservice.com/drphilippabuckley

My autistic nephew had an episode like this earlier this year. Stopped eating and drinking and withdrew completely from the family. He is late teens.
For him it was the start of a very severe schizo-depressive episode and he ended up in hospital for six weeks.
While that was extreme, I would say in your son’s case based on what you’ve told us, it is a medical emergency and you cannot manage it on your own.

Thesquaremile reading her details it looks like she doesn’t accept complex patients. Which he almost certainly is.

I can only imagine the desperation you must’ve felt Dequin.

Yes a professional (or several) who he trusts and admires would be ideal so the advice is coming from them and he is willing to accept their support.

LapinR0se sadly doesn’t sound beyond the realms of possibility for us. Strong family history of mental illness including schizophrenia. He has been displaying signs of depression for a year but refusing help and has displayed some threshold psychotic behaviours in last 3 months.

Just want a professional to scoop us up and say you need to do this, this and this, in this order.

@Peanutgurgle

OP, I don't think that it's the case that Philippa doesn't deal with complex cases, I think that it's the wider team there who wouldn't take the complex ones.

The website says that, in such cases, the client would need to see a Consultant Psychiatrist, Philippa, for instance.

I think that she is attached to Great Ormond Street.

We've had this before at work and you need to go to A+E

@Peanutgurgle I really hope the Eating disorder team are in touch. A starved brain can’t accept counselling or other forms of help. The body needs refeeding before it can start to process why it’s starved itself.

You either need the GP or A and E to start the refeeding process. It is dangerous to eat 3 meals and 3 snacks without refeeding bloods etc. Please get some professional help immediately. I don’t want to sound harsh but you really do need help.

I would suggest ringing them in the morning on 0203 475 7583 to ask whether it is possible to have an appointment with her this week, OP.

@Peanutgurgle

What is the situation today, OP?

Hi Thesquaremile. We tried Phillippa and another Private option but he is considered too complex and high risk.

Off to CAMHS in a couple of hours.

Pearl97 Yes I understand this entirely. GP can only do the referral to ED clinic which they have done. But this may be declined and will take 2 weeks. A and E will only hospitalise with total refusal. He is currently eating just enough. Certainly he will still be loosing weight but he doesn’t meet threshold for admission.

Believe me I am taking it seriously and we are trying every avenue to get him the support the needs. Unfortunately he is not a simple ED case (if there is such a thing) and therefore finding the right support is extraordinarily difficult.

I know you are not being harsh. I completely recognise the dangers of refeeding and how badly his health is being compromised. That is why I am so terrified.

@Peanutgurgle

OP, why would his referral to the ED Clinic be declined when his need is so great?

I did look at the criteria for Great Ormond Street and the Maudsley for you, the problem with the first is his age and with the second, where he lives.

I know. It seems ridiculous. I can only assume it is the multi pathology. Neurodiversity, Mental health ED. Completely non sensical and all so intertwined. GP simply said, may well get refused but we don’t know without trying.

@Peanutgurgle you are doing all you can, this is so difficult for you. Did the GP do physical obs? It’s so annoying as like you say private help isn’t available as he’s too complex.

I don’t want you to feel we’re not being sympathetic, just that the whole situation is so hard and help isn’t as forthcoming as it should be. Unfortunately you need to fight your corner which you shouldn’t have to. Is he eating 500 calories a day?

I think we are just about hitting 500 cals. I am offering meals and snacks, he usually exchanges something on there. Weirdly feta and greek yogurt seem to be acceptable. I know him well enough not to keep going with a meal and snacks if there is true resistance. Honestly it is miraculous anything is passing his lips given where we were two days ago.

GP didnt do obs and he wont let me do them now. Not even pulse. He did let me weigh him for referral.

He hasn’t changed his clothes or washed at all for 4 days now. He smells. He just lies or sits, staring. He wont even remove his shoes for bed.

This is how my nephew went which the psychiatric hospital described as a catatonic state. He was admitted as an emergency.

Us too. I used to make a batch with duck eggs instead of hen eggs (130 kcal vs 75), double cream instead of milk (you can mix it if it gets too thick), and then I layered them with butter and golden syrup. 3 thick pancakes came in at 1500 kcal.

But a doctor can feel if he is constipated.

I would say that this is urgent. The longer he gets used to getting no nutrients orally the nearer he is to getting a PEG. Also in a heatwave he needs fluids.

Not washing etc as well as not eating should generate help for you. For the GP to not to obs to someone who isn’t eating or drinking - that is madness.

I am glad you have the weight now so you now if he loses any. A lot of us wish we had weighed sooner.

I am so sorry this is happening to you all. He should be seeing someone medical on such low calories. We may all seem harsh or overly concerted as a lot of us have been where you are and wish we had pushed for help sooner. I just presumed that medical teams always help people, it seems you often have to be a those that shout the loudest. That isn’t my usual behaviour but if I was ever in Your situation again, I would go to A and E and demand help.

OP, it is sounding like the lack of eating is part of a bigger profile of not doing anything. Might you get anywhere with the crisis team if you mention these features too? I am sensing that in patient psychiatric treatment is on his horizon and it would seem that the sooner he is assessed, the better. Is it possible that his behaviour is being seen through the lens of his Autism and that is currently unhelpful? This sounds more like a mental health collapse of a young person who also has Autism.

You sound like the most amazing mum and it is disappointing, frustrating and terrifying that immediate help hasn't come from any of the professionals you have most sensibly sought help from. It is wrong but also true that sometimes you have to keep on making a fuss. Can you ring the crisis team again and describe his symptoms?

Much sympathy and complete admiration for all you have done so calmly and sensibly so far. Many of us would have properly gone to pieces in this situation. Keep banging on the door of mental health services.

I think the above poster has really hit the nail on the head. It really is so wrong how much you have to ask for help, but I really do think that the time has come for the crisis team or for you to call an ambulance.

Hand hold, OP. I have nothing useful to add to the suggestions from other PP, but wanted to add a hand hold. Keep on making a noise.

I think you need to take him to A&E. He sounds very poorly. It doesn't matter if they won't admit him today - they need to do a full set of observations, including lying and standing BP, repeated at 1 minute and 3 minutes, a sit up-squat-stand test (can he sit up from lying without using his hands, can he stand up from squatting without using his hands), heart rate, blood pressure, respiratory rate and temperature. If they are abnormal and they won't admit him, ask what the safety plan is. Tell them that you have been trying to make him eat and drink but that he is consuming less than 500 calories despite this.

2 weeks is 2 weeks too long.

What @Lougle says. @Peanutgurgle think about the advice you would give your best friend if this was happening to them. It’s so hard when you’re living it. You don’t want to be the one to have to make decisions.

All of the above observations need to be made. No medical professional should just be referring at this stage. Two weeks really is two weeks too long. Your son is almost asking for helping with his behaviour, someone needs to listen to you … and quickly.

We are here for you. This isn’t something you ever think will happen to you, but others like me have been there and now have knowledge we wish we didn’t have.