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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

To ask for help from you with how to deal with my son

26 replies

AliciaWhiskers · 22/04/2020 14:25

My son is 11. He has ASD and is really struggling with the lockdown. He has meltdowns quite a bit anyway but since the lockdown he spend most of his time saying he wants to die, asking for me to kill him, hitting himself in the head. He is refusing to eat lunch most days (part of that is an inability to make a decision about what to have), his sleeping is terrible (waking 2-3 times a night), he won’t engage with school work (although will do joe wicks in the morning and likes to go out to do pokemon go).

Today he is refusing to eat because he says he doesn’t deserve to. He thinks he has done things wrong (telling me I had made his breakfast wrong and refusing to eat it) and because of that he doesn’t deserve to eat, doesn’t deserve to play a game, doesn’t deserve anything nice.

I’m at a loss as to how to help him.

We wouldn’t need the threshold for CAMHS here and the community Paeds service have discharged him so we have no support.

I don’t know where he has got the notion that he doesn’t deserve stuff because he thinks he has done something wrong. How do I try and reverse that?

I worry about the lack of school work (although really try to prioritise his mental health) and he has a younger brother who also won’t do his work as he sees that his older brother doesn’t do any of his.

Myself and his dad (we are divorced) are both key workers so the kids have been offered a place at school but we haven’t taken it up as we work opposite days so officially we don’t need it. However I wonder if him going to school would help with some normality. It’s not what I want but I don’t know how to help him.

OP posts:

MT2017 · 22/04/2020 14:27

That sounds so hard for you all . I would try a day at school and see how things go.

blubberball · 22/04/2020 14:27

I hope some one helpful comes along soon with some useful advice, as that sounds very difficult.

MrsWooster · 22/04/2020 14:29

How able are you to gently ask him to explain his reasoning behind being ‘undeserving’?

Sooverthemill · 22/04/2020 14:29

It sounds very tough. Years ago I trained health and social care staff in ways of supporting families with an autistic child and I found the NAS very helpful. They have a leaflet here and a helpline. Please call them. They may be able to,help you or get you more help. Don't struggle alone

Daftodil · 22/04/2020 14:30

Schools often have a set menu for each week. Could you & he make one together so that he hasn't got to make a choice each day?

helpmum2003 · 22/04/2020 14:34

Going to school is a good idea to try. Poor you and him xx

LimitIsUp · 22/04/2020 14:36

Definitely try school. This sounds so hard, I feel for you

Daftodil · 22/04/2020 14:37

Visual timetables are good for asd children too. Do you have/could you make a now-next-later board showing the day's activities (with pictures where possible)?
Now: Breakfast
Next: Joe Wicks
Later: Maths

(And move each thing along once it is ticked off.)

nannynick · 22/04/2020 14:44

I'm on spectrum, so I will try to say what I am finding helps me and then you can decide if you want to try those things with your son.

Getting up:
Routine of having a shower, brushing teeth, getting dressed etc.

Meals:
Do a meal plan with meals that you know he eats, nothing new. Write out that plan and stick to it. This then stops the need to make a decision about what to eat. If eating the same thing for breakfast every day, so what... I have porridge every morning. Try to encourage him to make his own where appropriate.

Exercise:
A regular time to do it. People on the spectrum often like and get comfort from routines, so it's great he is doing Jo Wicks and getting outdoors once a day hunting pokemon.

School work: Has that always been an issue or only since lockdown?
Routine, structure. Set aside a time of day to do it and make it short.
So a quick 20 minutes doing some maths, at 11am.
Then gradually introduce more sessions, so say 2pm spend 20 minutes reading a book, then write two sentences to describe what was happening.

Focus on introducing short periods of time scattered throughout the day on the core subjects. Use a timer and once the time is up he can stop, or he can continue as long as he likes after that time is up.

Does he listen to audiobooks? Headphones on, listen to a book about a topic of interest. Podcasts are good as well.

I don't know if any of that will help but it is what I am finding helps me... having mini-routines and a structure to the day.

Hazelnutlatteplease · 22/04/2020 14:54

Have you had contact with the sleep clinic? Melatonin could help tremendously. In the meantime sleep sounds (amazon music and you tube) can be useful.

Yy to writing out a menu. and serving at set times too. If he doesnt eat it. Thats fine let him keep it or conspicuously put it in the fridge. Dont stress about it. Eating together is great but it can be quite intense (if fact were all finding lockdown quite intense in terms needing to talk to each other). You may have one for whom Tv lunches (!!) Or taking it for a picnic in the garden helps. Anything not to have to socialise or talk whilst you are eating. If he can prepare breakfast himself let him do it (I cant stand people doing my toast wrong, neither can DD and supposedly were the neurotypical ones).

Careful with praise. Praise often assumes a shared frame of reference of what is valuable. Dont be general with praise (that's great) When you praise, recognise the difficulty for him in accepting your values (i know you wanted ..... well done/thank you for doing.....)

Run a timer for school work. (One hour/45 mins then you can Pokemon). at the start of lockdown we were running timers for everything, (45 mins lesson, 20 min break, 1 hour lunch) look for time apps which have a visual indicator of time passing not just a numerical count down (eg have a sand timer)

Hazelnutlatteplease · 22/04/2020 14:58

Sorry on the praise thing, if you praise something with no value to him without explanation it devalues both the praise and his self esteem. After all if your praising him for something that he sees as worthless you cant value him very highly.
(I know it might not mean much to you but it means a lot to me)

olivesnutsandcheese · 22/04/2020 15:09

I would put them both in school as an interim measure. All his routine has been taken away from him, see if this could help

QuinceSavedMyLife · 22/04/2020 18:01

Schools are open for vulnerable children and he sounds vulnerable so i think it would be appropriate

Charmatt · 22/04/2020 18:06

The vulnerable definition is for children who have EHCPs or social care involved. Schools have been told that they have to be careful in expanding this definition as social distancing measures have to be maintained.

Anyway, the routines at school have been relaxed so it may not be of any use at all.

Charmatt · 22/04/2020 18:14

AliciaWhiskers,

My son is technically and adult but has (among many conditions) ASD. I have found it useful to minimise choice for him over the years, as he is better with certainty.

We've just had a food delivery and it came bang on the start of the designated hour and he was so much better for it - had it not come until towards the end, he would have been pacing and getting wound up about it. As we put the food away he asked what was for tea and when I told him, he was happy - he just wanted to know. Had I given him a choice, he would have found the situation stressful becuase he had just seen all the food being put in the fridge.

Letting him know what we are doing for the day or my expectations of him for the day is helpful - he is at college 3 days a week and has work set for those days. During the other days we give him simple tasks to complete which he enjoys. He knows I expect him to spend time outside everyday (vitamin D) but he finds this time difficult when there is no specific task so I always say, 'You need to go outside - take a book/your tablet, or have a small task ready for him.

Structure has been the key for him. He has an EHCP so he could go into college but he's better at home with us as long as he is happy.

Corna · 22/04/2020 18:18

I think that given his refusal to eat and self harming and talking about ending his life that you need a phone appointment with the gp and ask for a new camhs referral. Camhs are really stretched so you may need to keep pushing but thats where I would start.

Samisaman · 22/04/2020 18:21

Get him in school. My friend has a foster child who has ASD and is really struggling too, she goes to school every day. She too way saying she wanted to kill herself and it’s calmed massively.

Twigletfairy · 22/04/2020 18:23

I would absolutely be chasing a new referral in this situation. This has the potential to escalate even further than it already has. With any luck it won't, but I have seen first hand what happens if it does

reefedsail · 22/04/2020 18:29

He sounds like he is really anxious.

I think nannynick has given some great advice.

Go right back to your autism principles:
Routine and structure
Sensory input
Support for social understanding

With regards to the latter, there are quite a lot of good resources floating around the internet about how to address lockdown with autistic children- social stories etc. Don't assume he really understands why everything has changed or that it will eventually go back to normal. He probably needs to have some really explicit, tailored information.

BlackeyedSusan · 22/04/2020 18:45

A and E when he says it again. Should get more support that way. cahms can be fucking useless for autism.

ChazsBrilliantAttitude · 22/04/2020 19:47

Even for NT DC routine is helpful in lockdown. Mine are better now they have a set school timetable to follow at home. DS2 has stuck his timetable on the wall without being asked.

ZebraSpotts · 22/04/2020 19:49

does he have an echp? my son has asd and an echp, and if he wasnt coping, he'd go straight into school, because that's my plan b.
school offers the routine and people power that is sometimes needed. My best wishes to you @op

MakyJo · 22/04/2020 20:04

Lots of good ideas here. There is also a free app you can download OP that will allow you to create simple visual timetables on a phone. It is called VAST. I use it with one of mine who has SEN. It was created by a parent whose child has AS.

mypoorfurbaby · 22/04/2020 20:14

I agree with setting him a routine. Either together or just you.

We've stuck to a normal school day time.
8:30pm up to bed, no electronics, 9:30 lights out.

7:30 wake up
Get dressed
Breakfast
8:30 school day starts
The kids set alarms for break and lunch.
3pm we finish and go for a walk.
The school are setting them lessons every day.

Make him or get him to make a packed lunch.

My youngest anxiety was through the roof when school finished but sticking to routine really help her.

Good luck op

Original poster

AliciaWhiskers · 30/04/2020 08:51

Thanks all for the replies here. We do have a routine, and on a good day that works really well. Sometimes, however, he just refuses to stick to it and no amount of encouragement seems to help with that.

The planning meals is a great idea and we have started to put that in place and it's helping.

He doesn't have an ehcp - the school wouldn't support us in applying for it and a friend of mine who also has a son with ASD and has far more severe problems, especially with school, has had her application rejected. I'm not sure we would get anywhere with it.

OP posts:

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