14 year old DS- Autism- how much does yours sleep?

[PeachyPoppedBack]

Ds4 is 14, autistic, OCD, hypermobile, anxiety, and has ARFID.

After an absolute collapse medically in 2020 that added all the above to his existing autism dx we made ok progress under the eating disorder team and he is in the safe weight range, although still skinny. No autism school places available so attends a nurture PRU placement 3 hours a week.

He has just started CAMHs OCD therapy and his eating has gone right back. His therapist is continuing with things the way they are and we can’t just walk away as they manage his scripts and medication- max dose Prozac. We waited years for this, there is no other pathway. His therapist has already said we should wait until he’s adult but we know there are no suitable services at that age locally, it’s now or never.

He is now sleeping up to 18 hours some days. He has melatonin in term times but not atm, we don’t know if this is a red flag for eating (he only eats alone and often hides or bins food so hard to monitor), a reaction to the melatonin break or just a sign that a growth spurt is due- he has a lot of growth catch up to do.

I’m not new are autism, third diagnosed son and I am too, but nobody else has had ARFID or his list of comorbids.

Thank you.

How long has DS been on fluoxetine? If it is a recent addition it could be the initial effects of that. If he’s been on it a while it might be worth asking about swapping to sertraline, which is often used for teens with comorbid OCD. It’s unlikely to be the melatonin as that is generally one of the safer medications.

I would be concerned this is related to DS’s ARFID. I think you need to supervise eating more closely. If DS is hitting any of the red markers on the junior marsipan criteria DS needs to go to A&E. Is DS still under the ED team? Did the ED team have experience of ARFID?

How would DS react if you woke him earlier?

As an aside, the LA have a statutory duty to provide a suitable, full time education, and 3 hours a week is not that. If there are no suitable schools an EOTAS package should be put in place. Additional therapies that aren’t typically available via CAMHS can also be included in the EHCP.

Thank you. He has a statement (Wales) and this place is available full time but there is genuinely a complete lack of places; the only suitable school now only takes those with a learning disability. He won’t learn at home, we’re focussed on getting his hours up instead. Because it’s a PRU they won’t deregister him from the mainstream comp he can’t attend either so
theoretically he has two places. His statement is useless as we went through all the sorting then SENCO moved on without completing, meeting to sort in two weeks.

His ED team were good on ARFID, he’s not under them now but still under the lead Clinical Psych. He’s been on Prozac for a few years but max dose for six months. I don’t know why they chose Prozac over sertraline but he asked about changing meds as he’s developed tics and they said no.

He isn’t showing any real concerns elsewhere atm but he has Paed next month and I’m going to ask for a new bloods screen (virtual appt) thank you, someone else being concerned has prompted me to think of that.

The eating with others thing is very much black and white for him and was agreed with the Psych- he could eat alone as long as he ate. It is partly about distracting himself
with a screen to eat and also he has other autistic siblings and can’t stand eating anywhere they eat, one dribbles a bit and it triggers him. I did manage to get him to eat a safe meal
with me in the room tonight though as his brother is at my sister’s for a night (brothers all adults, mixed needs levels).

EOTAS doesn’t have to be at home. The statement should be transitioning to an IDP at some point, when it does, or now if that is going to be a while, it is worth appealing to ensure it includes all the necessary provision. A lack of places does not remove the LA’s duty to provide a suitable, full time education. While working towards increasing DS’s hours at the PRU he should be provided with other provision as well as what he can manage at the PRU, but that doesn’t need to be at home. It could be at a care farm, outdoor education centre, sports clubs/gym, therapies, a community centre, if DS likes gaming it could be Mindjam…

It is worth asking for a referral to Maudsley’s specialist ARFID service. Even if you aren’t in the room when DS is eating you can reduce his ability to hide food by e.g. ensuring there’s no bin in the room, not allowing him to go to the toilet, checking hiding places.

Fluoxetine is often the first time choice due to evidence and licensing.

If you are going to ask for bloods specifically ask for Vit D and B12 as any deficiency can exacerbate existing MH conditions.

Ds is 18 with a diagnosis of ARFID. He was treated by the Maudsley team that lego mentioned. We found getting support for ARFID almost impossible and it was only the Maudsley that have helped him. Now he's an adult we have nobody.

At times he was so physically weak that he could not get out of bed. And his weight for height dropped at its lowest to
75%. When out of education he would often sleep until lunchtime.

Ds does eat alone as he struggles with eating with others, but has never hidden food. He would just leave it on his plate if he can't eat it. In fact his lack of eating often upset him, as he has no body images or need to hide things, just severe restrictions.

Is there isn't any chance that your Ds may have started to develop anorexia or similar? Hiding food would indicate that he wants you to think he's eaten when he hasn't ( I myself was anorexic as a teen and that's what I did) which i know is quite common in anorexics. Ignore me if it's not relevant but might be worth a thought.
Could the higher dose of fluoxetine be causing nausea? This can be really difficult to work through especially for those with ARFID. Prior to treatment Ds would not eat at all when he said he felt sick ( which was a lot).

My Ds doesn't have OCD but is autistic alongside having ARFiD, anxiety and depression. And it definitely can be hard to get help and support. So I can understand your concerns.