AIBU to think I should have been able to get help with behaviour of DS(6) before getting to crisis point?

[Sink23]

My DS is 6 and is currently in year 2.

I’ll preface the below (which sounds terrible on re-reading but is all true) by saying or DS is sometimes a very loving and kind boy, usually when he’s getting 100% of our attention immediately and also getting to do exactly what he wants when he wants. We absolutely adore DS and sometimes think we’ve caused this by spoiling him too much when he was younger (he’s an only child and only attended nursery at age 3 for a few months before Covid hit) - with both physical things and our full attention.

His behaviour can be absolutely atrocious at home. He still has frequent temper tantrums and not a single “technique” we’ve tried to deal with these has helped at all, he will scream for hours if we leave him to it and likely become a danger to himself, us or really damage our house/things so we sometimes have no choice but to restrain him (he’ll then try to but us, but usually calms down in 10 minutes or so if we stay silent and effectively hold his arms and legs). He’s a very petit 6 year old but he is getting bigger so I’m worried he’s not learning his owns ways of dealing with these emotions because all of our friends’ kids outgrew tantrums years ago.

He refuses point blank to follow our instructions whether this is related to either “doing” or “stopping” something and if he’s cross he regularly shout in our face (just noise, not words) and also frequently tells us how much he hates us. He seems to have learnt that this gets a reaction from me/DH but we do our best to not show it.

Whilst we’re not perfect, our family is totally normal and I think DS has a “nice” life. DH isn’t DS’ dad but has been in his life since he was 1, bio-dad has never been part of DS’ life and there’s no siblings. DS has plenty of clubs, attention from us and does not have a high amount of tech time (he sometimes plays some games on the computer, usually Minecraft or the games from school, but we decided against allowing him the mindless play on a tablet because it had an immediately negative effect on his behaviour during Covid and he’s never really asked for it since). We have tried so many different ways of dealing with this but nothing has worked and we’re at our wits end.

In school, he’s an absolute middle of the pack child. In reception he was able to attend through lockdown as we were key workers. In reception/year 1 it was always brought up that he struggled to pay attention/follow instructions but the school weren’t particularly concerned by this. However, now he’s in year 2 a few of the more challenging behaviours are also showing in school - as well as not paying attention, he’s answering teachers back and starting to say no to them. Obviously now this is a massive issue to the school and I’m constantly being dragged in to discuss this with various people.

We asked for help via our Council’s families service a few years ago but were told that we weren’t disadvantaged so didn’t qualify, but when we asked for help we could pay for none was offered. We also asked for help from the school last year (hoping they’d be able to signpost, rather than necessarily help) but they pretty much said there can’t be any issue at home because DS is fine at school, and DS was probably just in his “safe space”.

AIBU to think that had there been any help available when I asked for it, it would have been possible to “nip this is the bud” rather than the resultant situation where it’s now a huge problem?

Any genuine suggestions/help/experiences are absolutely appreciated here. Please no bashing me and assuming that we’re bad parents. We’ve definitely done things wrong on occasions, but we’re not awful people or trying to excuse the behaviour. We asked for help when it became obvious what we were doing was t working and hit brick walls - we really have tried and it’s a constant worry that our DS is the “naughty child”.

Thank you.

@Sink23 - he sounds like my son who has autism with Pathological demand avoidance. I really really recommend you get him seen by professionals who understand this condition. Not just any old doctor/psychologist/paediatrician, someone with proper understanding of PDA.

If he has this then non of the normal strategies will help him- pda is basically autism with a panic disorder- he will not be able to control these emotions. Shouting/punishing/naughty step/warnings etc will make his symptoms get progressively worse and cause him to become extremely depressed and anxious.

I would strongly recommend going down the private route for assessment as it does sound like some neuro diversity, possibly asd/adhd.

At some point you will need a CAHMS assessment but this will be years down the line, ours took 4 year’s starting before the Covid upsurge so do keep pushing for this as well.

Some schools may not formally recognise a private assessment but may do so informally if it matches what they experience. So for example, teachers will be at pains to highlight that they can’t give medical diagnosis but will have vast experience on the “normal” behaviour of children at a specific age group so if there is a private diagnosis which matches their own thoughts, then this can help enormously.

Hi, have you tried contacting your local social services team? I know they get bad rap, but they are thee to help and can sign post to Early Help. Also School Nuse can help. Hope you get sorted x

@Sink23 I think the school are a bit perplexed because to them he’s gone “backwards”

This is exactly what you would expect with pda. These children are more ‘pro social’ and ‘normal’ than people expect from autistic children- they are often comfortable with eye contact and have amazing imaginations- this means they can be excellent at masking.

They present a facade of much greater social and emotional understanding than they actually have.

A very very common education trajectory for them is to start out ok in reception where things are more gentle, there is more play and fewer demands to sit still etc. Once they start to move up through the school they find it harder and harder to manage the increase in demands, their social and emotional delay becomes greater and more difficult for them to manage and they become very difficult pupils.

There’s nothing I’d say is a particularly difficult background. His biological dad pretty much walked out but it’s never impacted DS. My DH is his Dad (since he was 1) and DH is absolutely wonderful with him - I’m still stunned he hasn’t walked away from this.

Other than that, we’re definitely not a totally dysfunctional family. No illnesses/hospital stays but there was a few house moves when he was little whilst we sold/rented/bought again.

We have had a private diagnosis of ASD (with much support from school…who were clear that our ‘high flier’ would never get to the top of a waiting list but needed support for social skills). School have treated it in the same way as an NHS diagnosis (we did use someone recommended by the NHS). Worth its weight in gold and has help DS (10) understand himself so much.

I actually laughed out loud from your comment!🤣

Thank you - it’s this kind of real life experience that makes it slightly easier to start thinking it’s not just me.

As far as I’m aware, in reception the teacher basically flagged DS seemed young (even for summerborn boy) and had a practically non-existent attention span but she seemed to have a lot of patience for him.

I think year 1 was also relatively relaxed and whilst less play based there was still plenty of free play time and small group work with no fixed desks. Again, main issue was concentration and immaturity.

Year 2 was the first year that DS had his own desk where he was expected to be all day, so definitely more formal. Loads more issues this year where he’s just generally being a difficult pupil, he’s still not acting out in the same way as he does at home but he’s obviously causing concern at school now too.

I don’t think I’ve mentioned this, but if we do ask our son about his behaviour he acts in way that suggests he genuinely believes he has been trying hard and behaving well (say at his swimming lesson, when he’s blatantly faffed on just dunking in and out the water he’s adamant he was concentrating all the time). He’s a totally terrible liar, so I do think he believes this 100% in his mind.

PDA is frequently co morbid with adhd (my son has both) so that’s worth keeping in mind.

The reception being fine and year 1 being ok ish was my sons experience. His year one teacher just thought he was adorable and used to say oh I could never be cross with him he is such a love… so even though he was struggling he tolerated it.

In year 2 it was a different matter- he just sat at his desk staring out of the window or cried quietly to himself because he was scared. He wet himself because he was scared to ask to use the loo, he screamed and cried when I tried to take him to school, hung onto the furniture, locked himself in the bathroom, self harmed and on one occasion dislocated my fingers desperately trying to hold onto me. The school said he was ‘fine’ and not a problem (basically because he internalises his feelings as much as possible so he wouldn’t be hitting out and flipping chairs). He then started asking about and talking about methods of suicide so I removed him from school to home educate.

The autism/pda was diagnosed when he just turned 4, he is also diagnosed with severe adhd, dyslexia, dyspraxia and sensory processing disorder… but he is like a different child now he is over his school trauma.

I’m so sorry you and your DS have gone through this, it sounds horrific. I’m glad what you’re doing now is working for you.

My DS still maintains he enjoys school most of the time and does seem happy enough to go on a morning.

When he first started reception we had to carry him in whilst he fought against it for more than the first half term and then for a period when the school reopened after lockdown. Again I wonder about whether this is relevant and him showing his real feelings before he accepted internally that he had to hide them because we didn’t care (there’s the alternate line of thought that all kids go through this at some stage and our transition period was just longer than others).

You're writing style is very odd. You sound detached and not practical at all. Are you possibly autistic yourself? So what are you going to actually DO?

Arrange an urgent meeting with school and ask them what they are going to do? The irony is that they don't even need a diagnosis to put every support system in place. And you too actually don't need a diagnosis. Every bit of info and recommendations about what to try is available on the internet if you look for it. There are loads of good articles and books. That will give you info, more than an actual diagnosis does. Many people find that after diagnosis the aftercare from camhs etc is almost non existent. You need to be proactive and actually do something to now meet your ds's needs. It
Might be a good idea to also video his meltdown on your phone, as evidence, in case School or camhs dispute how bad he is and try and dismiss you that he is 'fine' when he's clearly not.

This is really good advice. Remove all outside stimuli and focus on sleep, eating and routines for three weeks, then start calmly enforcing boundaries without negotiation.

You sound like an amazing parent OP. My DS1 has ASD. The difficulty in changing settings/task and meltdowns sound very familiar. Do whatever you need to do to get an assessment in your area. Read books/websites for ND kids. It can't do any harm, and may well do a lot of good.

DS is 17 now, and doing really well. Diagnosis was key for him and us to help understand and manage his behaviour.

he can be referred for an assessment through the school and it will make him eligible for more support.

The referral system varies massively between LEAs and the school may not be able to do this. In my area-the referral must come from the GP.

OP, there is a nationwide shortage of EPs, so it’s not as simple as telling the school to get one in as some posters have implied. The LA ones are lately solely focused on statutory work. If you are desperate and willing to pay-I would find a private EP to assess him and ask the school to support you in putting their recommendations in place.

You sound quite rigid about the fact that covid must have affected him negatively in some way. In practise, I don't know any primary aged children without SEN who haven't fully recovered from the effects of covid, except for possibly some mild speech and language needs. Try to stop thinking about how covid is/was affecting his current behaviour because it more than likely isn't.

Just coming from an NHS standpoint... I think the 'private diagnoses aren't taken as seriously' is a myth personally, or an out of date stereotype. Public services are struggling so much that more people are resorting to private routes. I would pursue both - maybe start a thread on the SEN board looking for recommendations. Because you need support and advice as parents, right now.

I honestly have never heard of lots of attention in the early years being anything other than positive for a child. Maybe that's one of the reasons he does so well in so many ways?

Haven't had time to read the whole thread so apologies.

Whether or not he has ADHD, I think there are things you can put in place.

Stop restraining and holding him down. Try and walk away and give no attention to screaming or meltdowns

Give clear warnings for every single transition, as tiresome as it is. My five year old struggles with transitions but I'll say right five minutes and then we need to do teeth and then I'll tell him when it's 4 mins, then 3 (you get the gist!)

Try and over praise and reward good behaviour, give loads of attention when he's behaving and no attention when he's not

Follow through with boundaries and consequences. I'm guilty of giving in sometimes because I can't bear the thought of another tantrum but it doesn't help in the long run.

Read the book how to talk so kids will listen, I found it really useful.

Okay I haven't read full thread so apologies if covering same ground as others.

One of my children is autistic and there is a growing understanding as your child gets older that what they are having are meltdowns - not behaviour issues.

When my 9 year old has a meltdown - discipline is literally irrelevant. It is like a panic attack - the important thing is to help her regulate herself again.

I actually hate reading these threads where people just lecture about boundaries and behaviour. Some children are highly distressed when they are having these issues and it is nothing to do with 'being firm'.

start reading about autism / what used to be known as aspergers OP. If you want to ask questions about how we knew/ how we worked it through and got the diagnosis (my child is what is known as high functioning although this is a misnomer tbh) please message me.

This may sound a bit “fluffy” but little boys IMO have a hard time understanding their feelings. I used to put mine on the step and ask him to come and tell me if he is mad or sad. When he worked it out, he and I could talk about it. I know they’re all different, but I found my little guy needed space and time to work out what was going on. He had either an auditory or language processing problem (not helped by living overseas where a diagnosis was impossible due to language differences.). He was frustrated all of the time. Kids need the words to express themselves and for that to be effective, they need to understand them first.

I agree. My daughter has a diagnosis of ADHD but is almost certainly autistic too.

The meltdowns at home are likely to be a sign that your child is masking at school, leading to overwhelm and dysregulation at home.

I suggest you post in the SEN section.

I had two neurodivergent children. One got in the habit of having nightly tantrums. My husband tried to jolly him out of the tantrums. The tantrums increased. Eventually I lowered the boom and told my husband that his way had not worked and now we were trying my way. We simply ignored the tantrum and walked away. It is quite a lot of effort to keep a tantrum going when absolutely nobody is watching - what with all the screaming, thrashing and writhing. If your son is as manipulative as you say, he is perfectly capable of keeping himself safe. Has he actually ever hurt himself during one of these incidents? If he has, then obviously ignore my comments. Following my approach, the tantrums decreased dramatically. My son is actually a fourth year medical student now which I'll admit is not necessarily a marker of mental stability but at least shows progress towards a goal. My son was one of the very clever ASD children with lots of interests and obsessions - if you want a collection of macarenas we have one.

There may well be something going on here in terms of neurodivergence. Can you organise a private assessment? I am not sure how things work in the UK with that though.

I’ve acknowledged my “detachment” and how it comes across in my writing style earlier in the thread - in short, it’s definitely my coping strategy to be able to avoid me just completely crumbling.

I’d say this is ultimately practical, rather than not practical but I can see why it might look like I’m not doing as much as I can now- it’s been years of being told “it’s normal/deal with it” where we’ve tried everything and made very little progress. It’s utterly exhausting.

I’ve got video evidence, I’ve asked for help/direction and effectively been told not to bother. It’s amazing how much of a know it gives when you’re already struggling to be told “don’t bother, just do I things differently”. You’d be slammed for not giving things a chance to work and looking for an excuse with the insinuation you weren’t parenting properly.

We don’t have infinite funds, we’d have to make cuts to pay for anything private which we would absolutely do but no idea where to go as everyone online just seems to have different opinions and we’re worried about paying for the wrong thing or someone unscrupulous.

There will be a consensus though. If you start asking around among parents, names/clinics will come up regularly.

I think even confidently stating to your son's teacher that this is not typical and you are going to seek both private and NHS help, could begin to change things.

My son is very similar - even down to being very petite and looking angelic! He’s finally on the assessment pathway, but it took a long time for the school to take us seriously. As he’s got older, we’ve been able to understand his behaviour more - he’s likely PDA, and any demands stress him out. Once he gets past a certain point, he gets “stuck” and then we see a completely different character. When he was younger, that would be the shouting, hitting his head on things, out of control type meltdown that you are talking about, but now he can become aggressive and say horrendous things.

Couple of things with my son - his processing is limited. He is incredibly eloquent and has encyclopaedic knowledge on certain topics, but he can’t understand verbal instructions or simple logic. It’s easy for us to think he is being difficult, when he simply doesn’t understand.

Very poor theory of mind. If he knows something, then we must obviously know it too. And if we say we don’t, we are just trying to upset him.

Doesn’t understand consequences- even obvious ones. If we “punish” him for anything, then he thinks we are just being mean to him. That one has improved over the years a bit though.

Sensory issues. Struggles with noise, smells and textures.

Demands can include physical demands - being hungry, tired or needing the toilet can be a huge trigger for him.

Oops - that got long. Sorry! But I would keep pushing with the school and try to get him on the assessment pathway.

There's loads you can do.

1. Ring GP and ask for referral to camhs. Or better still Consultant to deals with ASD and ADHD. Don't be fobbed off, politely insist.

2. Email Senco and ask for same, eg referral for ASD. Ask for urgent meeting. Ask for EP (Educational Psychologist referral).

3. Look up which consultant diagnosis ASD at your local hospital. Ie who your GP will refer you to. Make private appointment. This will cost £250 to £500 to £750. Then when you do see them privately it can assist in fast tracking your nhs appointment.

4. start thread on SN. Your'll be given great individual advice. Which Books to buy.

5)Put into place all the advice you've been given on this thread. You've not been rigid enough and given him enough discipline, and yet you seem surprised that this has resulted in thus set of circumstances.

Pull your socks up and get on with it. There's loads of practical things you should be doing starting this morning.