I just don't know what is wrong with my son

[Yamashita40]

I have two children. The eldest is doing really well at secondary school. He's been a pretty easy child to be honest.

Our youngest is 5 and in year one. His last report before lock down was really good. He has has the same two little friends since nursery who he thinks the world of and they play together every day. His teacher has no concerns about him apparently. No one ever has mentioned concerns and he's been at nursery since 18 months old so he's been in contact with plenty of professionals.

At home, especially since lock down, we just don't know how to handle his behaviour anymore. He has multiple meltdowns in a day over anything from not wanting to switch the TV off to going to his grandads house (he helps us with childcare). My husband is wfh but is on constant calls so can't care for him after school and work but he would like to just stay at home.

He loves school and missed it so much when it was closed but is so reluctant to do homework. It ends up being a battle to do anything. He used to just like me reading to him but now I'm banned from doing that and he says he hates books.

We've tried to implement a bedtime routine but about a year ago he just refused to stay in his room at bedtime. We tried for months walking him silently back upstairs. He said he was frightened of being on his own. Now I have to go to bed with him at 9.30 or he won't settle to sleep. He still sometimes will not settle til 10.30. He just won't stop talking to me so I don't get any headspace to rest on an evening. He won't let my husband lie with him, it has to be me.
I once had a weekend away and he sat up til 2am waiting for me to come to bed and wouldn't sleep.
So clearly he's tired a lot as he has to get up at 8.15 for school.
He ate anything til he was 18 months old. Now his diet is limited to cereal bars, smoothies, and rubbish like breaded chicken. He stopped drinking milk when I took his bottle away from him. He will have bread and liquid vitamins so I think he survives off that. I told the health visitor this at his 4 Yr check and she said he was clearly growing and wasn't underweight so she wasn't concerned.
He takes the same packed lunch every day and is clearly bored of it as most comes back uneaten. Every morning is a battle to try to get him to eat even a bite of breakfast before school. More often than not he goes in having eaten nothing.

He has sensory issues which some woman diagnosed over the phone when we asked occupational therapy for help. He refuses to dress himself. He's kicks off about how his shoes feel. This is slightly improving though.

So he sounds possibly autistic you would think? Well his teacher says he shows no signs of autism apart from the sensory stuff which is very common she says. He does role play with his toys, acting out the voices. He doesn't line things up, his voice is expressive and he puts on different voices for the different toys he plays with. He doesn't really acknowledge strangers but he's really attached to us, his grandma and his two friends.

I emailed the occupational therapy team again last week to see if we could be referred for further help, maybe a dietician. No reply so far.

I just don't know if he's just really naughty, if we are doing the parenting wrong. We really are trying our best. He's physically strong now and I can barely cope with him when he's running off and ignoring me.

Any ideas welcomed. I can't sleep and I feel like we're failing him.

Sorry to hear you are having a tough time. Unfortunately I have no advice for you as not experienced any of this before. I hope someone is along soon. I didn't want to read and run 💐

Teachers are not usually qualified to diagnose autism which also means they are not qualified to say that he doesn't have autism.

I would wait on the response from OT. I think you absolutely have grounds for a referral / assessment / some investigation. If OT are not able to make this then I would probably go through the GP.

I'm not qualified in diagnosing ASD at all (and nor should it be done over the internet!) but your son does sound like he shares quite a few traits with my 8 year old son who does have ASD.

Sensory issues
Total night owl - would probably stay up until midnight if I didn't prevent him (and over lockdown quite frequently did )
Complete switch around of what he likes and what he hates, even in the same conversation

However, each child and person with autism is different (aren't we all?). My son is very physically and verbally affectionate (except he can be just as violent and verbally abusive as well). He is an awesome mimic and a very expressive reader. He likes to physically act out scenes from films and videos as he's watching them.

I really do appreciate how worrying you must find this. Does the school have a decent SEN department? That would probably be my first port of call, followed by the GP

Honestly, these were my thoughts as I read your post:

• he’s not getting enough sleep, 9.30pm way too late for a 5yo. This probably manifests in behaviour issues
• limited diet not great, but not unusual. Maybe don’t make an issue of it, get him to eat whatever he wants, whenever he wants. He’s clearly getting enough calories, nutritional deficiency can be made up. I never ate breakfast before school, just couldn’t stomach it.
• it’s great he has two little buddies to play with
• kicking off about not wanting to go to grandfather totally normal. No kid likes being shunted around when they’re tired (not a criticism of you, just what my own kids feel towards the end of the school term)
• won’t dress himself also not unusual. My DS is perfectly capable of doing it, just wants me to do it
• he needs consistent and diligent sleep training. At this age, this means talking about it during the day, addressing his concerns, explaining gently the impact on the family etc. He’s old enough to be brave about going to bed. He can have a night light
• why on earth are you banned from reading to a 5yo??? I’d go right back to it, whatever the school says. Complete nonsense
• no child switches off the TV without trying it on. Totally normal. Screen time and its consequences have been the bane of many parents’ lives during lockdown.
• the only thing that rings a small alarm bell is not liking the feeling of shoes on his feet. Is it these shoes? Was he barefoot a lot during the summer? Is this an excuse because he doesn’t want to go out and he knows he needs to wear shoes to go out?

It does sound like hard work for you, but I don’t think this is alarming, personally. Some children are more difficult than others, and they go through difficult phases at different ages. The consequences of lockdown may be manifesting in this way for your second DD.

Sorry, DS.

Sorry, also meant to say that my son finds 'transitions' hard and they can trigger a meltdown.
Obviously lockdown and 2020 has been very hard for everyone.

I suspect the teacher's knowledge of autism is restricted to rather stereotypical -and outdated - examples.

Much of your description would definitely fit autistic behaviours. It's a spectrum so there are many variables - just because he acts out voices doesn't mean that he doesn't have difficulties elsewhere. Sounds like he does: anxiety, eating issues,sensory, unsettled when out of routine etc etc. Those would be enough to make further investigation worthwhile as it sounds like he,and you,could do with some support.

The National Autistic Society website is a helpful resource as a first step for advice etc. It's not great to find out your child has asd ( and yours may not have) but the sooner you can access support the better it is for everyone.

Your teachers diagnosis is an absolute nonsense. Many children on the spectrum can engage in role play with inanimate objects, put on different voices etc. There are a number of famous actors on the spectrum, Bill Murray and Anthony Hopkins off the top of my head. Not all autistic people line things up. It is common for autistic children to mask at school and then things fall apart at home.
Before I retired I was part of an assessment team. I would suggest you go along the diagnosis route via a GP referral.

His 9:30 bedtime really jumped out to me. Is that really the time he's going to bed? That is much too late for a 5 year old.

Off topic, I didn't realise Bill Murray has ASD! Paddy Considine too, incredible actor. I've often wondered whether having to mask in everyday life might lead to better acting skills?

Anyway, sorry OP - derailing thread. But, if - IF - your DS is diagnosed, it's really not the end of the world. I wouldn't have my boy any other way.

You need to get strict about bedtime and get a routine sorted along with reading books. He doesn't dictate to you what happens!
You could lay out four books and say pick two from these and we will read these in bed
You stay in chair, him in bed with night light on.
For him going to sleep what about trying a lullaby musical mobile such as lullaby lambs. It has lights and music and it turns off after thirty mins so he could watch that lights/listen to the music after you've left the room

I understand that having an ASD diagnosis would make things easier mentally/emotionally. But it's also a way out.

All the things you described are perfectly normal behaviour for a 5 year old stemming from not enough sleep and not consistent parenting. I'm sure that you are a wonderful parent, but you do let him dictate your family life and that feeling of power -subconsciously- could be driving his behaviour.
Having said that, going for an assessment won't hurt anyone. But based on criteria in this country both my son and H would be diagnosed with ASD. Neither like socks that have writing on the bottom part of the feet. Otherwise normal people both, but just can't stand it. I think labeling minor things quickly as asd is just as bad as not noticing and not doing anything about it.

1. start bedtime earlier and slowly shift his pattern of sleep to get more.
2. try giving him power over little things, but no compromise on the overall effect. He can chose have a bath or shower. after or before dinner. Which book to read. Which night light to plug in. (have 2-3 to chose from, but more is overwhelming)
3. having a tantrum over switching tv off is as bog standard as they come. 2 ways to go about this. for my son telling him 10min before switching helped. Other kid: don't engage with tantrum. Let him whine, cry, shout. Calmly remind him that when he is done there is an apple on the counter. Or the toys are waiting. then walk away.
4. chitchat at bedtime. That's a tricky one. The key is to not engage. Read him a book. Then main lights off, night lamp + small lamp for you and you read your own book. Don't play on your phone. In a few days/weeks he'll realize that whatever he does it doesn't matter as you will keep reading your book. Eventually you can say: I'll be reading in the living room and go out.

The thing to bear in mind -and this is based on your values- is this discourages him to share stuff with you in an intimate magical time of day. I always valued that so actually built it into the routine. story, chat, another story and then we are done. At 15 my son still opens up about everything and anything after 10pm when he should be going to bed :)

1. your concept of parenting might be off. There is no situation where a 5 yr old bans you from anything. He is 5, you are many multiples of that. No. Parenting isn't about being your child's best friend or letting them "express themselves freely". The opposite: you need to be the one setting up boundaries and making sure that he learns to function within them. It varies family to family where these are and you have to find out what fits your family's needs/viewpoint. But you are the driving force, not him.
2. I would think -based on what you wrote- that this is about kid/parent power struggle. One of the reasons this happens is that the kid feels powerless in general and becomes "attached" to the routines where he can exert control. I would suggest to look at his day and routines and see where you could enable him with simple choices. Never more than a few options as he is very small.
3. Food. It's perfectly normal behaviour. Breakfast is oversold :) I could never stomach breakfast and still I grew up. My kid won't eat anything else than rubbish cereal (still). And he won't eat anything white either. Look at the big picture: so you really think that he will only eat these foods when he is 30? Unless he quickly develops many other ASD traits it's highly unlikely. Just don't fuss and don't care. Kids feel it if your stomach is in a knot, but your not showing it. And they will use it against you.

Just realised he's only 5. I thought you meant year 5.

Sounds normal to me

To be clear: I am not judging your parenting. I don't know you, so how could I?
I think you managed yourselves into a situation that your son -again, subconsciously- is taking advantage of for his emotional benefit. This is perfectly normal. Probably all kids try this to some extent, but some parents inherently diffuse the situation without it escalating to this.
I would say the key thing is, as long as a parent is trying to do better the kid already won. Because it means mum/dad cares enough to put effort into making it work.
Sorry, I thought I'd clarify because I know that in writing I tend to be quite BW.

Thank you every. I thought I was going to be flamed for being a shit parent.
Yes he does have power over us. We will do most things to keep him happy or it results in a tantrum.
The sleep at 9.30 was a compromise. I tried lying with him at 7.30 but he would still be awake at 9 and I then hadn't had an evening after work so 9.30 was a compromise. He does seem to like the time with me to talk so maybe that is key.

So the route would be to consult our Gp? The OT don't seem interested.

I'll have to get ready for work but thanks so much for replying.

I recognise a lot of the behaviours described in your post in my son. I had wondered about ASD with him too. A friend recommended "1,2,3 magic" for us and it really has worked. It's such a no nonsense approach and does work with ASD children too so no harm in trying. It had honestly revolutionised our home life and I'm a much more confident parent for it. Good luck.

Tantrumming about the tv going off is normal! I would be switching it around though. So he likes the tv, that should be the reward for e.g. reading.
He's five, just dress him. Not worth the stress.

I don't quite get the lunch box. You say he has the same thing every day but doesn't eat it, so why does it have to be the same thing every day. If he's not going to eat it anyway, you might as well try and give him one or two different things to tempt him. Maybe it will confuse him in to eating something!

I think the sleep is a huge issue, my two are foul without enough sleep. Is he genuinely talking for the whole hour? Could you go to bed earlier and give him a limit? So you go to bed at 8, but at 9 (or 830) he must be quiet else you'll leave. Take your phone, play some music and read a book. "No, mummy's reading, time to sleep." on repeat.

Has he always been like this about being away from you? Is he missing you at school? 5 is around the age when mine started to ask about death. Is he worried that you might die or not come back?

Would he drink soup from a mug?

I think, and hope, I must be way off line here, as no one else has even hinted at this, but to me your DS sounds like he suddenly became scared of male adult figures in his life. He sounds like a very scared and confused little boy to me, but really hope that your son's behaviour is just a normal thing that his little character is going through, or even that it is Autism or something similar. However, if it ls at all possible that a male figure in his life is abusing him in any way, not necessarily sexually, please give it some thought, investigation, then if you are at all worried, report it. I think his GP might be a good place to start, as his GP could get things rolling for various different scenarios, including Autism.

Also I remembered other sensory things he does. He used to be awful to have his hair washed until he started swimming lessons and scream the place down. If I run a bath he will scream that's its too hot even if it's barely luke warm.
The shoes thing is mostly when shoes are new. He mostly prefers to wear wellies.
When the OT rang to go through the sensory stuff they did a checklist for autism and she said no we definitely don't think he's autistic.

He will only eat his bland meals if he's sitting alone at the table. There are no big family meals as he wouldnt eat. It has to be peaceful. When we do eat out he won't even glance up at our food.

The reading thing. We literally have hundreds of children's books. My older one loved them. I think it's really important to read to kids. He will sometimes let us buy him a new one and read it but then he won't want to look at it again. We do enjoy where's wally together though.

My son has autism.

The playing can be misunderstood by those who don't understand.

Is he playing a shared and joint attentive game with his peers? For example is he acting out role play and changing his ideas as a response to the situation or is he playing alongside friends and acting out "scenes" he's learnt or situations he's observed.

That's very important. My son could play Thomas the tank engine with all the faces and expressions. Except what he did was simply react scenes from his dvds.
If another child played with the track his play was always alongside and simply - for example - they moved cranky the crane in a way - would be him directing the scene and who does what.

You need an expert SALt to observe the play and how it's embedded.

Please feel free to PM me.

How do you deal with the meltdowns? I’m just wondering if he has worked out that he can get his own way by tantruming.

With the food I would try not to make a big deal out of it and turn it into a battle. I watched a Supernanny episode on dealing with a fussy eater and she got the family to sit round the table together and make conversation about everyday stuff (not food related). There was no pressure put on the child to eat but no other options offered than what the rest of the family was eating. If he doesn’t eat his food that’s fine, but there’s nothing else. Work with him and offer healthy variations using ingredients you know he likes. But no pudding unless he eats his main course.

I have a difficult four year old who likes to say no to everything and shares some of the same sensory issues as yours (dislikes hair washing, won’t dress himself, dislikes shoes etc). God knows I get it wrong a lot. It can be so tiring having all the arguments. But I think you have to lay down some boundaries and not be afraid of the tantrums. I back off now and let mine stew for a bit as he works himself up so much there’s no point trying to reason with him. Then eventually he wants attention again and I can ask him to say sorry. Hope things get better for you x

Thanks for all the replies. There are definitely no risk of abuse happening. He goes to his grandads once a week with his older brother and his grandad also has a partner who is there all the time. He is strict with him though so I think that's where the opposition to going comes from.

Yes he does very much run the house. Our neighbours are lovely but they probably don't want to be hearing him scream now they're in their 80s so the aim is to stop him screaming ASAP. They've had their house up for sale twice now.

I have ordered that 123 book and will read that to give me some ideas hopefully. I think we need to shake things up.

He doesn't mimic scenes he's seen when he plays. I often play with him and I'm allowed to come up with a storyline and we can go off on different directions with the play so it is definitely imaginative play. He does much prefer when I play with him than on his own.

I'm off tomorrow so will ring the doctors.