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.

Just to emphasise, the week before DD1 was admitted to hospital, the GP was still 'going to write to the dietician...'. As soon as I asked them to document that it was ok to care for her at home, she wrote us a letter for the hospital. Once we got to A&E we were sent straight to paeds and admitted. We left 9 days later, were almost readmitted 3 days later, and would have gone down the NG route if the psychiatrist hadn't prescribed olanzapine.

I think you'll find that once someone realises how ill he is, things will move.

Had meeting with Crisis team today. Chocolate tea pot. The most frustrating two hours of my life. All he got was a referral for therapy which will take 12 weeks. Believe me I stressed all that I have told you. There was no minimising. I told the crisis team that I felt I needed to take him back to A and E and the Nurse told me that they would just refer back to crisis team and we would still be in same position.

He ate a few spoonfuls of porridge this morning, a small bowl of greek yogurt and fruit for a snack, three pancakes with some feta at lunch and this afternoon a slice of dry bread and some more greek yogurt. He just refused tea entirely.

I am actually not afraid of taking him to hospital. In some ways it would be an enormous relief. But it feels like he is doing just enough to stay out.

I agree that he is yelling for help which is part of the frustration at the crisis team for being so inept and not recognising his distress. He just kept saying that late teens is a tough time for Autistic boys.

I’ll take him back to GP tomorrow. Insist on obs and if they don’t feel able to complete then ask for a referral to paeds via A and E

F@cking hell @Peanutgurgle if we ever need reminding our NHS is in crisis! This is absolute madness! I’m so angry this is happening to you.

I would still take him to A and E as this isn’t just metal health this is physical health. I wish this wasn’t happening, but I also wish you were being supported.

They wont want to admit someone with ND, thats the problem, there are guidance and policies to prevent admission for kids on the spectrum (also adults on the spectrum to be honest).

At work we have had this a lot, we insist the carers take them to hospital and they are usually admitted to be honest.

I'm sorry for you all. CAHMS is not fit for purpose. I hope you have more support from your GP.

How are things today, OP? Have been thinking of you and your son and hoping you have been able to access some support

Also thinking about you x

me too xx

I hope the lack of response is because you're actually getting some help and haven't got time to check your phone. The fact that you were alert to your DS's needs was brilliant.