ASD and behaviour - confused!!

[systemsaddict]

Hi all,

I should start this with a thank you ... 2 years ago I posted about my inability to get my son into school on time when he started in Reception, and as a result of the feedback from people here, ended up getting a referral to our local child development centre. 2 years on, we finally started seeing a clinical psychologist, and by the assessments he's done (3Di) and the sessions we've had, he seems pretty sure ds will get an ASD diagnosis (Aspergers - we await results from a multidisciplinary team assessment). If it wasn't for the advice I got on here, all this would have taken even longer!

So we are finally getting input into helping with his behaviour, some of which (token charts, spotting meltdown triggers) has really helped, but some of which I am very confused about and could do with some other parents' takes on.

I still feel like I don't know how to handle things when we do end up in situations where he is refusing to co-operate. I can't work out when it's better to be flexible around him, understand how he is feeling, try and keep his arousal level down by being positive and calm; and when it's better to be absolutely strict, insistent and in control - this is what we do at this point every day and we need to do it now - so his day stays predictable, I stay in charge, he doesn't get to call the shots and he learns the social rules.

Example: this morning, the morning routine was screwed up a bit (ironically because he was doing a drawing for school, which is a Very Good Thing so I didn't want to mess with it). We ended up getting him dressed 20 mins later than usual then leaving the house straight away. Normally he gets 20 mins in between dressing and leaving the house to calm down. So his arousal level was up, he had a fight with his sister, insisted she had to leave the car so he could get in first, refused to get out of the car the other end, refused to walk the 100 yards to school, eventually walked as slowly as humanly possible, we all got there very late.

I could have picked him up and forced him in - but that is a guaranteed screaming scratching meltdown. I could have just stayed relentlessly positive and understanding while encouraging him in - but that doesn't tell him this is not the way we behave. My compromise today was to tell him off as we were going in to the classroom - only to find the teachers (who are great this year) greeting him with a beaming smile and lots of positive talk about what the day would hold, and I could see that was better and they were trying to shift his mood and I felt like I'd screwed up, again.

The psychologist said to log problematic behaviour (Antecedent, Behaviour, Consequence) and make sure that the consequences of a given behaviour were always predictable - but I still don't know what those consequences should be. Also, I'm human and can't be completely consistent all the time! Another friend with a lot of professional experience in child mental health says it's very important that the parent should be in control, and I need to take the power back. But I don't know how to do that, without triggering more meltdowns and more resistance. I just feel like I'm failing constantly, whichever I choose.

Sorry this is so long ...

Yyy agree about the parenting not being about controlling them, being about nurturing etc - the thing which has thrown me off is my friend (who is a professional in this area) saying that for kids with ASD it is especially important that it is clear that it is the parent who has the power (and the associated responsibility), in a predictable fashion, so they always know where they are IYSWIM; so this is itself part of nurturing them, and if he is calling the shots it's too much for him to deal with and that in itself is not helping him. Ie to nurture him I need to be firmer. I'm maybe not explaining it that well but that's the rationale.

But I completely agree that actually once the behaviour has happened, it's too late - he's in the closed-down space then and it becomes pointless. I am partly struggling with (and resenting) the constant mental challenge of avoiding getting to that place in the first place, I think.

Thanks so much for the suggestions, which are quite brilliant! Yes he can understand time (in fact 'if you get dressed now you have 20 mins to play' is one of the few things that works) but I have been surprised how well visual cues have worked so I will definitely try the visual timetable thing - blocks the size of the time things take is brilliant, and giving him choices about the order is a great way to manage both having things compulsory and giving him choice. Wonderful.

What deep pressure activities do you do? We could fit in a bit of sofa cushion squashing!

If you really look closely at your DS behaviour, I'm betting quite a lot of money that you will see most of them are linked to control.

• he wanted to finish his picture (control his activities)
• he wanted to have his usual 20 minutes (control his routine)
• he wanted to sit where he normally sits in the car (control his situation)

So - I'm sure you can see where I'm going with this - if you want to 'take back control' and he wants to 'stay in control' you are both heading for a battle for control, aren't you? (I am saying this with love and bitter experience by the way) So while I understand what your friend says, I'm not sure that taking back control is something that would help you. You need co-operation, rather than control.

What helps me is to look to share control (which is what Polter's suggestions are all about) - giving choices when you can but making some things 'rules'. Understanding that when DS is about to go off on one it's because he's feeling out of control and then bringing him back in with some choices.

So with the picture, you could try something like giving him a countdown / warning when it's time to stop. Then stop, take the picture away but then immediately give a controlled choice and reward. My DS is praise focused so 'Brilliant, thanks for putting that away DS. Now we need to get back to getting ready. Do you want to race up the stairs or do you want to swim (don't ask) ?'

Do you see what I mean?

The final thing in this epic post is we all have days - particularly mornings - when it goes to shit. Don't beat yourself up about it. That's also an actual rule

Mahoosive x post

I would not worry too much about the 'taking control' side of things. You sounds like you are doing brilliantly and your friend probably deals with all sorts of things including dysfunctional families and has, of course, not walked in your shoes......

Before my dd2 got to grips with the concept of time I used to use the Timetracker device which looks like a Traffic Light system to transition between tasks and use visual prompts. I tend to think very carefully about transitions, sounds like you are doing the same. Now that dd is 7yrs 8months she knows what 10 minutes and 5 minutes mean, we have dispensed with the Timetracker and things seem to be a lot easier.

It might help you to start thinking about general principals, things that can and cannot be negotiated, to give you a framework to work within. One thing I would never do (and this is just my own rule of thumb and not a judgement on you) is allow my own dd2 to make dd1 (anxious, dyslexic with her own poor sense of time) late for school. I have been known to drag dd2 to school half dressed before, in order to show that some things are non-negotiable and that siblings need to be considered. But whether you are actually able to do this depends on what would happen if you insisted your ds got in the car when asked.

I am fortunate that my dd2 is very petite and easy to 'chuck' into a car, even mid melt-down (she tends to freeze with anger over time restraints rather than hit out). Ultimately it is for you to decide which 'Important Things' to 'insist' upon. Every parent needs to pick their battles. You seem to be doing what every responsive/caring parent does ie what doesn't go well we reflect upon, forgive ourselves for and learn. The cycle never ends!

Honking for you!

Handywoman xxxx

YYY about 'choices' and 'rules' ASD kids are very 'rule' based which can be used to your advantage. You can do the choices thing, but then there are also 'rules. Which was what I was saying in a v v v v v v roundabout way.

xx

Thank you all do you know, talking to people who are dealing with this is SO much more helpful than all the professional input in the world. I'm not dissing the professionals, but they are not the ones who have to get both kids to school in one piece every day!

Wilson - yes - co-operation rather than control. Yes! Sharing control, and making sure he gets a controlled choice the instant he feels it's slipping. That is definitely a strategy I can adopt. And your last paragraph made me feel a whole lot better

Handywoman - yes - on working out which things are non-negotiable. And you are right about siblings. I think I am going to talk to him when he is calm and make it clear that making other people late for school is not an option, and then we can work out together how we are going to make sure that doesn't happen. Poor dd (who is only 4) is NT to the extreme (making her the odd one out in our household ), very grown up for her age, very flexible, hugely people-focused and articulate, and as a result, I am conscious that she gets asked to share much more of the load than most 4 year olds - eg if ds is having a bad morning she finds her own way to the classroom while I get him to his, etc. We are lucky that she copes so well - but it isn't fair. It is tricky, as what happens if I physically force him is a violent meltdown - many times I have gone into work bleeding, which is not a good look! So it's about avoiding it in advance. I will look into the Timetracker thing too. Thanks for the support!

Polter - that would be ds' perfect start to the day too. Including the spinning. I need to think about how to introduce it to him, as it will be a change in the routine, but I think it will help.

Thank you all I should have posted here months ago!

Keep posting, we're free and we sometimes have too. You just don't get enough wine from those professionals, I find.

Google pathological demand avoidance for ideas about anxiety/control/behaviour connection and how to apply the theory. Helps you spot what is compulsive refusal and what is just pushing boundaries.
Trying to do normal parenting isn't going to work so you need to let go of the NT thing that makes you feel your kids' behaviour makes a statement about you. Ie not caring what others think. When you do this you can choose your battles and find there is actually a lot less argue about than you think. The less confrontation there is, the more he can observe and learn from others - self motivated learning rather than imposed lessons.

Keep posting, we're free and we sometimes have too. You just don't get enough wine from those professionals, I find.

I vote we put that as the header for the MN SN board

Great posts wilson

Ah yes SilkStalkings, at my first Googlings around, PDA seemed like by far the best descriptor of his behaviour! and indeed his whole developmental trajectory. His Reception year in particular was characterised by complete refusal to do anything he was asked to do - violently at home, passively at school. He has got somewhat less demand avoidant over time though and I think probably it was intensified by the trauma of starting school . The psychologist seems surprisingly sympathetic to PDA as a diagnosis - I think he has had some dealings with Elizabeth Newson - and I wouldn't be surprised if it ended up being at least part of ds' profile. Dp is very good at getting ds to do things without directly asking him to; I am less good at it.

"The less confrontation there is, the more he can observe and learn from others." Thank you. Very helpful. I am going to copy some of the key quotes from this discussion into a notebook so I can remind myself of them in tricky moments!

Systemsaddict we have changed our whole parenting style since we heard of pDA in April and it described DS2 (4) to a tee. It has made such a difference avoiding conflict, he is no longer the angry Tasmanian devil and our other kids are happier too, they're liking him more and have nothing to rebel against themselves. I haven't been punched for over a month, things are now very relaxed and optimistic.
We're lucky to have caught it this young as we have trained his Reception teacher and they are making huge progress. Official dx is autism with traits described by PDA. Psych said if behaviour starts to get worse we can try anti-depressants to try and sort the underlying anxiety. That Might be worth asking about in your case?

Things I have let go with all my kids: whether he has breakfast or wears a coat, trying to get apologies out of ds2, 'attitude', bad language, answering back, scenes in public (panic attacks really), anything that regular parents would see as reflecting badly on them eg looking smart.
He kicked off in a cafe today (sickie) and I heard everyone in it jump out of their skins at a particularly loud sudden yell from him. Knew everyone was watching and possibly judging, I restrained him til my friend sat down with coffees. Then I let him go and turned round to face friend, ignoring him while chatting BRIGHTLY. Worked a treat, the pressure was off him and he sat up and helped himself to his drink.

I agree with silk, sounds like PDA methods would be spot on for you too. You do get used to it, be negotiative, indirect and the best for us is to use humour and back off if you see him getting too stressed , sometimes giving a request and then leaving him with it can work well. PDA is about extreeme anxiety , if you treat his behaviour as such it becomes easier to understand him. I would also say that to keep trying to use traditional discipline methods could not only be ineffective but could make him worse . I speak from experience, rewards , sanctions etc do not work if PDA describes you're son.
Good luck.

Yes humour is the one thing which can get him out of a spiral, I only realised this after doing the behaviour log for the psych, and it is one of the reasons dp (Scouser) can work much better with him than I can.

I also realise that my friend, whose reaction first threw me off, was talking about 'typical' autism - ds is definitely more atypical with PDA traits. It is hard to see the anxiety when what we are getting is "you stupid idiot" [punch, kick, scratch] but I need to remember that is what is going on.