Some advice, please?

[SnakeyMcBadass]

I'm going to be fairly vague on purpose, and I hope that it's ok for me to post here.

DC (10) has always been a challenging child. He had such epic tantrums as a toddler that we spoke to our GP about them (4 hours long and violent at times). DC hit all milestones and does well at school. DC has friends, although sometimes makes social mistakes and finds it hard to work out where they went wrong (eg, grassing up a classmate to the teacher for a minor misdemeanour and unable to understand why other child was annoyed). DC still has tantrums, minor issues which erupt in to huge melt downs perhaps every couple of months. DC struggles with change, organising themselves, and taking responsibility for anything (It is never DC's fault if they get into trouble, and DC is often anxious and insecure). DC is, I would say, emotionally immature yet very articulate. DC takes things very literally, and is liable to argue back about just about everything. DC also has some minor quirks, such as wearing certain clothing items in certain ways. DC was assessed at 5 due to the tantrums, and a child psychologist made a preliminary diagnosis of ODD. A paediatrician found DC's test results 'spikey' and wanted to investigate further. At that time, we pulled back as DC was coping well at school and a 'label' seemed unnecessary.

Now to the point. DC is in final year of primary school. DC is still coping well at school (although teacher says DC delivers what DC needs to, not what DC is capable of). DC still struggles with simple responsibilities and frequently lies to avoid them (teeth brushing etc). DC is deeply insecure and frequently accuses us of loving sibling more, of always making DC the 'bad' one, and is often quite unhappy :(. DC refuses to discuss feelings, it's like they don't have the words. They just clam up or go in to a rage. However, DC is now very affectionate. DC is struggling now as Christmas approaches, and their routines are messed up. We are seeing more and more meltdowns, rudeness, argumentative behaviour and what I call 'caving', where DC spends a lot of time on their own in their room just being quiet.

If I am honest, I agree with my GP's assessment of DC when DC was a toddler, that DC is in the shaded area between NT and diagnosable. I want to do what is best for DC, and worry that by doing nothing, I am letting DC down. I also worry that by doing something, DC will be further convinced that we don't love them or think something is 'wrong' with them. I feel stuck, tbh, and just wondered if anyone had any advice? Sorry if any of this isn't clear, I think I might have brain dumped.

Would agree entirely with PolterTurkey here.

How do you think he will manage at secondary school?.

I would be asking the GP to refer your son asap to a developmental paediatrician. A "label" should purely be seen as a signpost to getting more help.

Thanks for responses.

I haven't read that book, Polter, but I'll order it.

I have no idea how he'll cope tbh, Attila. I worry that changing classrooms and different homework will be overwhelming for him. I'm not in any way suggesting that a 'label' is a bad thing, it just didn't seem necessary at the time. Now, though, I suppose I'm wondering if the label would get him access to some social support. But deep down, I'm thinking 'What if I'm wrong, and the HCP's tell me there is nothing to be found, and I'll have to face DC as the mother who thought there was something wrong with them because she was shit at managing their behaviour?'. Not sure I'm articulating this well, but I'm so worried about getting this wrong I feel a bit stuck. It would be an easier decision if he was obviously struggling academically and the teacher had noticed something, but he never melts down at school and manages to keep himself in check. It's at home he can explode and I think we've learned to manage him rather than help him cope iyswim. Is there help for DC in these circumstances? I know that funding is cut everywhere and I assume that money has to go to those that most need it first. In some ways, DC's stuff seems so minor as to be ignorable.

I really don't know Polter. Some aspects of Aspergers leap off the page at me, but by no means all. He's introverted, gets panicky in crowds and finds social events exhausting. Loud noise bothers him, and he has some preferences for certain textures (soft/fluffy). It's all quite vague and hard to pin down. He gets massively anxious if plans change suddenly, but is utterly fearless when it comes to roller coasters. He's funny and sweet and infuriating and complex and stubborn and vulnerable all at the same time. If I voice concerns to family, I'm told he's just a headstrong person like relative X or Y. Yet relative X and Y seem bloody miserable to me.

The things you describe do sound quite familiar to me from my DS, who is a very able Aspie and in mainstream school. He was diagnosed at age 6 because at the time his behaviour in school was scary. He showed a lot of ODD signs – I was using “Explosive Child” myself which was originally focussed on ODD – but his eventual diagnosis was Asperger’s. His coping abilities have increased over time, and I’d say they just about kept up with the demands on him when he moved to secondary school.

Two experiences from my DS’s transition to secondary. First, DS coped very well with the set-up of secondary school once he got used to it. The structure, the formal timetable, worked very well for him. I think that’s because he has a good memory, a good sense of space and time, and relatively few sensory issues so he could understand the teacher’s voice, cope with crowded corridors etc. He did get into some physical bother with other kids in his first year but it settled down. A more forgetful child or one with more sensory issues might find secondary harder.

On the other hand, socially DS has really found it much harder than primary school. He is not bullied and he does chat to other kids in school (he is outgoing, chatty and lively, not always appropriately so) but when he started secondary he lost his circle of close friends who knew since him he was young and it is taking him a very long time to make new ones. The other kids didn’t know how to take him, he found it hard to join in after-school or lunchtime activities, and it took him a long time to find kids with common interests. Choosing exam subjects helped him to find more compatible kids but it’s only now, in his fourth year, that he is starting to meet up informally with school-friends, and that’s still only been once or twice.

Because of his diagnosis, DS did get extra help with his transition to secondary school. He also got access to a specialist club for kids with social difficulties, which helped him get on better with the other kids. He didn’t need a diagnosis for that but it did help that the were school aware.

So… I can see why you feel unsure of what’s best – we never really had a choice, so it wasn’t an issue. But anyway, you don’t have to face your DC with the idea that you ever thought there was something wrong with him/her, or with your parenting either. I have learned new ways to manage my DS, and ways to get on better with him, which are a mix of managing his needs and generally improving my parenting. The various professionals who did the diagnosis asked DS to show them things and never made him feel as if he was doing badly at any tests. Quite often the most important test was alongside a different activity, it was the conversation while he worked on a puzzle as much as doing the puzzle itself. I’ve always presented it to DS as getting help for all of us so he can be happier.