How to cope when one child dictates everything

[Nonie241419]

We have three DCs. The eldest is 9 and has always been high maintenance. We've seen various professionals along the way and they have all supported my feeling that he has Asbergers, although we haven't pursued a formal diagnosis for various reasons.
It's half term, and I have lots of fun plans for things to do with the DC, but DC1 is in the midst of a massively challenging spell. He is being defiant and rude about even the most innocuous requests. He's going out of his way to oppose me and I am feeling that I can't venture out of the house when he's being this difficult. He isn't better out and about - he's the same where ever we are, it's much easier to contain at home. It's not about punishing DC1, it's about minimising the impact of his difficult behaviour.
But it's not fair. My 7 year old deserves to have some fun. Is it better to venture forth anyway, knowing DC1 is likely to kick off/be very rude and confrontational? Or how can I make being at home fun for DCs 2&3 (DC3 is 2).

Can you find something that Dc1 would like to do (eg round at a freind's to play/some sort of play scheme) that he could go to for one day while you do something with the other two.

Is there anything he likes that takes the pressure off, for example, playing on a tablet/phone? Could you plan a day where there are spells of chill with the tablet time eg while dc 2and 3 go on playground?

How about things like swimming? physical exercise tends to help dissipate the negative emotions, and it is less one on one? Or cinema?

I have two with AS and have just about given taking them anywhere on my own because I can't manage the behaviour. We do better in very quiet places or if there are two adults so that we can go in opposite directions. One of them has major anxiety issues so would prefer to be at home anyway but then the other one will have a meltdown because he wants to go out - can't win. I would suggest finding some clubs / sports that your seven year old can do by himself so that he gets to do some fun stuff & then you can do something that your eldest would like. We usually find they are much easier on their own.

I would also recommend from personal experience that it is worth starting to pursue a diagnosis in case problems get worse. At nine my two were pretty much as you describe your son - at eleven they needed specialist schools (to meet social and behavioural needs - they are fine academically). The social demands and expectations at school really increase at this age which is perhaps why he is acting up at home. The behaviour of ds1 at home dramatically improved when his needs were finally met in school.

To be honest it would probably help if you pursue the diagnosis. Children with Asperger’s often have huge issues around change, unfamiliar places, and disruptions to their routine, as well as intense sensory responses to some noises, sights and smells. What seems like a nice day out to the rest of the family may be traumatic to your oldest son. And yes, things like that often have huge effects on the rest of the family and there are no easy answers.

Things that may help are: preparation, such as drawing a timetable for the day so your DS knows what he is doing when; keep to a routine for mealtimes etc; keeping all outings short and simple; just do one thing at a time, so “swim them home”, rather than “swim then lunch out then park then home”; avoid crowded noisy places.

With a diagnosis you may be able to access some solutions such as specialist holiday schemes and respite which will let you go out with your other children; autism-friendly days out so you can all go out together, and even social groups specially for siblings.

Thanks all. There are no holiday clubs running near us. We've ended up pretty much housebound anyway due to poorly toddler and vomiting me. I've been encouraging him into the garden as much as possible to try to work off some energy, and then following it up with 3DS or Minecraft time to bring down the giddiness. We have to go out tomorrow as DC1 has an appt with his clinical psychologist (seeing her to develop anger/frustration management techniques and how to work with authority figures). There's a new soft play place nearby which DCs 1&2 both want to go to, so the current plan is to do his appt then go there. Whether we'll make it is not certain though. He's been more settled the last couple of days, but has ended up today having a big blow up about toothbrushing .
DH is adamant and immovable about not seeking a diagnosis and I can't do it without his agreement. There are few resources around here for ASD support that I can't already access.
He is very high functioning. His sensory issues are fairly minor (he needs seamless socks, doesn't like long sleeved tops, but is fine with loud noises etc). He can cope with changes in routine, it might make him a bit whizzy, but he rarely has a meltdown. His major issues are that he hates being a child and not having autonomy in his life. He wants to be in control of everything, and firmly believes he has all the knowledge/equipment he needs to be able to run his life. He sees me, DH and his teachers as annoyances who should be put in their place. He often speaks to me in an incredibly sneering, patronising manner. He can be very engaging and sweet, but it's been a long time since we've had a whole 'nice' day.

The thing with HFA children is that they can be seemingly very articulate but have a complete inability to express their needs e.g. I am getting very anxious so please get me out of here which then is communicated instead via challenging behaviour.

The controlling behaviour, certainly for ds2, is a sign he is very stressed. It does help us to manage the behaviour if we acknowledge it is due to anxiety rather than naughtiness although we don't always get it right.

Even if you don't want to pursue a diagnosis it is worth reading up about AS and HFA to learn behavioural management techniques to implement at home. Tony Attwoods book is a good place to start and "The explosive child" is always being recommended on the SN children's forum.

Forgot to say - do you have a trampoline in the garden - ds1 spends hours on his every day and it really does help to calm him down & keep the household at peace. So much so that I even got a little indoor one for the winter when it is too cold or wet to use the outdoor one.

I hope the softplay went OK! I wouldn’t have tried to do softplay after a psych appointment as my DS was always in a vile mood after anything like that. But, your DS may be different. Can your DH take some time off to be with your DS while you take the others out? One of our friends gets on very well with DS and they share interests, so he used to “boy-sit” for DH and me when we went out. They’d have a great time talking Dr Who or computer games meanwhile. Could you do anything like that for your DS one day so you could take your other kids out?

My DS doesn’t have very many sensory issues either, I just mentioned it because a lot of kids with ASCs do. He does the arrogant thing when he’s stressed. He doesn’t do it all the time and he is mostly OK at school because he is highly intelligent but he finds “not knowing” very scary so he talks as if he what he believes must be true and the rest of us are wrong. DH and I find it funny but heaven help anyone he marries, because he does know a lot and he is often right so it will do her head in totally when he starts talking nonsense as if it was obvious truth! And yes, anxious and controlling go together very powerfully for him. Has anyone recommended The Explosive Child? I found it very useful for managing huge blow-outs over trivia, and quite a few people over on Special Needs like it too.

Given that you’ve had a lot of investigations and professional input already I’m a bit puzzled about why your DH is resisting this diagnosis, but hey ho. Round here getting help without a diagnosis would be like making bricks without straw. So you've done well.

Ds2 has Asperger's and used to be exactly as you describe. The controlling thing isn't anger, it is anxiety.

One of the things that helps ds2 is to have some 1: 1 sports lessons, like tennis or swimming, because he knows what is going to happen (unlike random sport) and it is moderated by an easy going adult who is paid to be nice to him rather than a exhausted mum who is too worn out to kick a football/be bossed around.

1: 1 musem trips or outings by train also were much more satisfying to ds2 than outings which involved a lot of random stuff to do with his siblings, me dealing with more than one child trying to please everyone. We tried to factor these in to the week, dh took ds2 out quite often by himself. Is there any chance to get help with the younger ones whilst you took out the elder.

Over scheduling made ds2 behave very badly too.

Ds2 quite often behaves in a way I would find intolerable if I didn't know he had Asperger's. Arguing with him doesn't help, just accepting I have to have a very firm routine with him, decide in advance what the plan is and stick to it, in a way that SUITS him, rather than trying to fight against the tide. You will never win. But you can work around him if you consider all the things that stress him out and defuse the situation. Also give yourself some slack. Always go for easiest option if there is one I sometimes paid a teenager to take ds2 to the park to kick a football, just so that I could take the others out without upsetting him. If that is a financial option.

Reading Tony Atwood Asperger's book. You can always read it, even if you don't pursue a diagnosis. School need to take on board the stuff which stresses him too, or that will add to your load; namely that your ds is having difficulties at school that aren't recognised or allowed for.

oh and my ds2 absolutely loved softplay. It was a perfect sensory environment for him. He still loves it! Any rough and tumble suits him perfectly, rolling down banks, being sat on etc.
He also loves dressing up (aged 12!), acting, dancing and music when he can listen to what he likes in his own room.

I think that your DH's attitude towards diagnosis is strange tbh!!

A diagnosis has been nothing but helpful for Dd3, we all know now why she wants to be in control and can work together to help her feel less anxious about the world.

She already had a "label" before she was diagnosed, in fact she had several they were: Naughty, difficult, controlling, spoilt, little madam etc

I think your DP should consider which kind of "label" would help your Ds the most both now and in the future.

Good luck.

I think what you said about authority figures and teachers in particular is a massive red flag, if not a red herring. It is not that they are in authority that matters, just that they are telling him to do things he finds very difficult.

I think you and the clinical pyschologist are looking at things from the wrong end of the telescope.

My ds2 has no problem with authority as such, as long as the authority ask him to do things which are reasonable to his skills. I too have used to words tyrannical to describe my ds2, so I am sympathetic to how it feels to be bossed around by someone much smaller and angrier.

However, ds2 gets like this when he feels backed into a corner and no-one appears to be listening to him. There are lots of techniques you can use to get him to engage more successfully. I think breaking the problem into small steps often helps, making instructions very explicit very example or goals very simple, lots of praise for small achievements in the right direction. For example whenever ds2 is polite or chatty I always tell him how much I enjoy his company or how I liked talking to him or the way he listened etc, or I enjoyed walking with him or chasing him. Lots of positive reinforcement, I suppose you might call it ABA. We never do star charts or reward charts as they have made a lot of situations worse or more tense.

Thank you all. You've given me a lot to process, consider and things to try.
Soft play went fine (he does love it), right til the end when he asked DH to buy a plastic sword and stropped when he was told no.
The appointment was interesting. He was clearly stressed about the issues we have been having and was keen to talk to the psychologist on his own. He was much calmer after he'd talked to her, and stayed calm for most of the rest of the day (apart from the blip after soft play). He didn't want to talk about what was said in his appt, other than he's set targets for himself, so I've left him to process it until he is ready to talk to me. We finished the day on a really nice note, playing Cluedo with DH and DC2. DC1 coped brilliantly with making a basic error and being 'out' early, and just helped out, moving playing pieces when needed and rolling the dice for DH. I feel like he let go of quite a lot of tension today.
I'm fairly keen to get a trampoline, I think that would be a hit. God knows where we'll put it though!

DH is adamant and immovable about not seeking a diagnosis and I can't do it without his agreement. There are few resources around here for ASD support that I can't already access.

Does your DH have ASD too? Could this explain his rigid thinking?

He isn't doing his DS any favours by resisting the diagnosis and he's denying your whole family access to support which could enhance everyone's lives.

I assume this is due to ignorance and fear so perhaps he needs to have some conversations with parents whose children have diagnoses and some professionals who have seen the benefits of the additional support.

Even without a diagnosis, your DS may be entitled to DLA which could allow you to pay for some support which could be of benefit to all of you.

I think OP & her DH need a neat simple list of the benefits of diagnosis. (Okay, I need this list too). From what people are saying the diagnosis (IF it was forthcoming) would mean several big maybe* benefits:

• greater understanding (maybe, because it's said that some ppl with ASD love loud & rough & tumble & others hate it, so I'm not sure a pattern to help with understanding at all)
• respite care (maybe)
• specialist family outings (maybe)
• special family socialising days (maybe)
• DA (money)
• social groups for siblings (maybe)

Have I missed anything?

*maybe because none of those may be offered in OP's area.

ASD specific school support has been a massive benefit for us because anxieties expressed through difficult behaviour at home usually originate in school for our DDs.

Another benefit for my DD1 has been an understanding of her own difficulties and an explanation of why she always felt as if she didn't fit in with her peers and was missing out on a part of any conversation happening around her.

People often seem to fear labelling their child and professionals also use the term labelling to put parents off the diagnostic process but, having met dozens of other parents of children with ASD, I am yet to meet one who feels that diagnosis was a mistake for their child.

DH definitely has some ASD traits and I'm sure his Dad is on the spectrum. His position on diagnosis is that it will cause issues for DC1 as an adult, leading to him being discriminated against when it comes to getting jobs etc. I assumed he would be wrong, but when I did some research, the employment statistics for adults with ASD are frightening. From memory, it was only something like 13% in full time employment. That frightens me. DC1 is bright and talented, he has lots to offer the world and I'm scared of exchanging his long term prospects for short term benefits.
In terms of the benefits available locally, based on bidibidi's list, there is no respite available, either for him or for his sibs, I can already access family support without a diagnosis, and we wouldn't feel comfortable claiming DLA (we aren't rich but we're ok financially, so wouldn't want to claim from the state). I am pretty well read about ASD, and am always open to learning more, but DH won't read anything and I don't believe he would even if we got a diagnosis. Fundamentally, I think he thinks if he ignores DC1's ASD, it will go away.

What I found was that an ASC diagnosis got people asking the right questions about my son. It doesn’t tell them the answers.

Knowing he had an ASC enabled people who didn’t know much to find out more for themselves, and it meant they were less reliant on me having to tell them exactly what to do in every possible situation. I still had to tell people a lot of things, but at least the diagnosis gave them a framework to fit together what I was telling them about DS and a starting point to find out more for themselves. Or if they already knew about ASCs sometimes they could point me at resources and strategies they knew about and I didn’t.

And the older DS gets the less I want to be the only person who understands him and his needs.

I assumed he would be wrong, but when I did some research, the employment statistics for adults with ASD are frightening.

It isn't the diagnosis that prevents those people from being in employment. It's the condition itself. You don't have to disclose the diagnosis to anyone if you don't want to. You only need to tell future employers if you think you will need some sort of support to help you manage it. This was made very clear to me by a careers advisor when DD1 was diagnosed.

Your son's condition won't go away and, as he becomes a teenager, he is likely to have more problems, especially socially and in school. I knwo it seems like a long time off, but, if you deny him support that he needs, his GCSEs are likely to suffer badly.

The benefits of a diagnosis are long term as much as short term. And you do realise that your fears that a diagnosis will in itself prejudice your DS’s future are unfounded – no-one has to tell an employer, or a university, or anyone else, about a diagnosis. It will be your DS’s choice who to tell (well your choice while he is still a child, though increasingly his own as he gets older) although if he needs extra help or allowances as the result of an ASC (or other condition/disability) then he will need to tell them to qualify. That still doesn’t mean anyone is allowed to pass the information on without his agreement.

As for the stats, well, they probably include many people who function a lot less well than your DS.

Agree with "Goldmandra" it is not the label that lowers employment but the nature of the AS itself. ( although I do think the published figures are very misleading and outdated ). Do also not confuse academically bright with ability to function in society - ds2 is / was Level 5/6 in keystage 2 but has refused to put pen to paper for most of the year. He used to have friends (well a select few anyway) but now he has withdrawn totally and I struggle to get him out of the house most days. No-one even suggested he might have AS until he was Year 4 although the traits were clear in retrospect. I really hope your son does not suffer in this way but ignoring the issues will not help them go away.