is there any help available for us ?? , aspergers

[thriftychic]

since camhs diagnosed ds2 with AS a few months ago , they have put us on a half day post diagnosis workshop and thats it .
it was ds2 aggressive , controlling behaviour that led us to camhs and tbh its more like ODD or a conduct disorder than typical AS

I asked camhs for more help as they appeared to be washing their hands of us now we have a diagnosis and all they have done is refer us to surestart , our local parent and family support . Their behaviour or parenting courses are aimed at typical children and they dont think their courses will help us ( i dont either).

all they could suggest ( they seemed to be clutching at straws) was to get on to school and get help there , thinking it was probably school that was triggering the stress . But , as it stands he doesnt have any help in school because although he hates going ( he says its pointless and boring ) and refuses sometimes when hes had a meltdown over something at home , he is doing ok in most lessons , has a few friends now etc . there doesnt seem to be anything to be done in school .
The lady had some knowledge of AS but seemed to keep looking for things that just arent there , trying to find AS issues when its just that he wants his own way ( I think)
e.g this week didnt want to go to school , ds2 said i should keep him off because of the snow . he finds any excuse not to go , surestart lady thought it could be the snow , sensory issues etc . i knew it wasnt . he refused to go to school in the end but later in the day was out in the garden enjoying THE SNOW.

but , at home hes flippping out regularly , smashing things up , hitting me , parading around the house taunting and intimidating us over seemingly small issues and then being upset vowing not to do it again .

we have tried rewards and consequences , tackled the worst behaviours consistently with written list of rewards/ consequences and stuck to it . IT DOESNT WORK .

we have tried identifying the triggers but it just seems to be anything he doesnt like , asking him to do his homework , telling him no he cant play xbox all day , needing to nip out when he doesnt feel like it or want to etc etc results in a shouting stressing boy who then flips out .

where can we go for help ? who can give us some behaviour management strategies that ARE going to work with an AS child ?

thanks for reading x

I'm certainly no expert but this sounds more like PDA to me than AS. Have you looked at PDA on the NAS website? Others with a helluvalot more knowledge of this than me will be along shortly, I'm sure.

I think school is the cause of his stress and his bad behaviour at home. I think it is likely to be an AS issue because anxiety is the single most obvious feature of AS. All AS children are different but anxiety is what causes the controlling behaviour/bad behaviour in most cases. So you have to tackle what makes him feel safe and calm and then build from there.

A start would be to read How To Talk So Children Listen. Listening is one of those things AS children are especially deficient at, if it doesn't suit them, but also it is simpler...they can't process what you say, unless it is said in a more effective way, which suits their particular mindset. So if I shout at Ds2 to get ready, he will shout back. If I say he is going to be late, he gets upset, and scream and hides. If I ask him to get ready step by step, break it down, without implying there is an alternative, very calmly without any moralising, he tends to do what I say.They will scream to shut out demands they can't make sense of.

We have been having loads of success with this approach in some areas. Definitely be firm, strict, consistent, but in a very AS appropriate way. What matters to him, what does he care about, how does he want to please you? Those are all ways to get through. Empathy is a great help with ASchildren, not just rewards and consequences. How to Talk is anti- timeout and naughty step approaches. They recommend trying to work out what is making your child badly behaved in the first place, rather than just fixing the bad behaviour when it occurs.

Read it! And go back to SENCO and think of strategies to reduce his stress in school, make him feel safe and reassured.

My elder son who is at secondary quite regularily screams and shouts about things. Instead of getting into screaming matches with him, we are tackling this as a) teen hormones b)defusing c) consistently firm over behaviou we want him to show rather than rewarding or punishing. So for example we might come to some arrangment over the telly watching, you can watch this but Spanish first. Telly is nt a reward for the spanish as such,it is a consistent approach that homework must be done. It is not bribery. Or it is "bedtime". Tries to stay up on go on computer. No it is bedtime, and remve computer. That is consistent firm,not "consequence" type approach. Bedtime is always 9.30. And re-inforce with nice chat at bedtime etc, winding down stuff...

My elder son who is at secondary quite regularily screams and shouts about things. Instead of getting into screaming matches with him, we are tackling this as a) teen hormones b)defusing c) consistently firm over behaviou we want him to show rather than rewarding or punishing. So for example we might come to some arrangment over the telly watching, you can watch this but Spanish first. Telly is nt a reward for the spanish as such,it is a consistent approach that homework must be done. It is not bribery. Or it is "bedtime". Tries to stay up on go on computer. No it is bedtime, and remve computer. That is consistent firm,not "consequence" type approach. Bedtime is always 9.30. And re-inforce with nice chat at bedtime etc, winding down stuff...

re-inforcing there sorry...

thanks for the replies , forgot to say that ds2 is a teenager , almost 14 now .

Ds is 15. Asd /hfa
He too would like things his way all the time ( who wouldn't ? And if you can't read that in other people or know that you have to accommodate

Ds is 15. Asd /hfa / dyspraxia
He too would like things his way all the time ( who wouldn't ?) If you can't read other people or know that you have to accommodate others and their feelings, then there doesn't seem to really be much of a reason why you CAN'T have your own way does there? Just other people being deliberately mean and unreasonable ! ;-)

We have to be very ordered and strict with him. we stick to routines. Making him suddenly do stuff would piss him off no end... But he can do it if its handled in the right way . We try to pre-empt any situation with a positive before it becomes a negative . I.E -"You can go on the pc now for 1 1/2 hours before dinner if you want" rather than letting him just go on it and thinking he has free reign ( coz hes naturally controlling) and then arguing about coming off. For this reason , he has no pc of his own.... And he is timed on it.

School is good . He has funding for 15 hours ... But generally has support in most lessons. He would find it too stressful to cope if he didn't have support. We would definitely be seeing more behaviours that we had in primary without it .ie... Either anxiety ... Or it's co-partner -anger.

He is pretty good on the whole... He seems to have an anxiety/ anger scale that he understands .We used anxiety scales to help him identify this. They also use the same scale at school. He knows that he needs sort himself out or remove himself from a situation when he reaches a certain point. A "3" ( out of 5 ) on the scale is a good point for this.Lol...4 is the point of no return!
Ill see if I can find the scales we used and link to them.
Social stories worked well for him too. He was about 10 though... Your boy maybe too old and sophisticated to do them . Either way,I think the main trick was getting him to recognise the stages of anger and anxiety BEFORE he panicked or had a meltdown ... So that he could control it.

Lastly...There are some counselling groups that do a lot of work with kids ... Anxiety and anger. It might be worth seeing if you can find something in your area ?

Lol.. Sorry about that first half reply . Chubster fingers

this was it
Probably lots of other stuff out there now.

We didnt get any help either trifty, Dd3 was discharged from camhs straight after her diagnosis. We were given a leaflet about a course for parentsof children with autism but we have been on the waiting list for 13 months!

All her support comes via her school and luckily the sen team are very proactive. She has done quite a few social skills groups and one about making and maintaining friendships.

I have joined a support group which is very active and organises activities with whole families.

There really doesnt seem to be much out there.

Inthewilderness has given the same advice that I would.
I've found How to talk so kids will listen, invaluable.

I've also had to recognise the enormous impact of anxiety on DS...even in things that are familiar and 'should not' cause anxiety.....but they do.

I agree with handy woman , sounds like PDA to me too. My son is diagnosed asd/PDA , the best help is learning to use PDA methods. If he's PDA being strict, routines with not work at all...believe me we did all that prior to diagnosis, it was disastrous! Take a look at the PDA contact group for great advice and PDA methods.
It's might be worth looking into as PDA is difficult to diagnose.

A couple of ideas

1. http://www.ambitiousaboutautism.org.uk/page/what_we_do/training/training_programme.cfm

These guys do a variety of training courses aimed very unusually at the Aspie/HFA end of the spectrum & are well worth checking out. I'm especially impressed that they are running courses for teens rather than just focussing on the under 5's (not much use to those of us whose kids are late diagnosed!) like so much LA stuff does.

The tutors are from the coal face of working with directly with children, and so have all sorts of practical hints and tips up their sleeves. They make the NAS LA delivered standard one size fits all courses look frankly a bit pathetic tbh. There are reduced rates for low incomes & parents.

1. Also what's your son's receptive language scores like? If a kid is verbal then the fact he or she doesn't process/understand 1/2 of what's said to them is often overlooked by local authorities yet it's as disabling as being deaf in daily life. I've been frankly stunned difference at how much a decent SALT programme aimed at improving comprenhension has reduced DS's PITA tendencies.

1. If your child is a teen then the "incredible 5 point scale" - a programme to help children recognise firstly their own emotions and then identify and respond appropriately to other people's might help. The book is on amazon.

thankyou for the suggestions , i will order the how to talk book from amazon . The 5 point scale book is expensive , cheapest seems to be £50 unless somewhere else has it cheaper ?
I live in manchester so not ruling out the training course but if the only place to do it is London that would be a trek

PDA , i cant seem to find any specific behaviour advice ?? ive looked and cant find anything .i can see explanations of what it is etc but how do i deal with it ?

ds2 will not accept any responsibility for his behaviour , its always my fault for asking him to do something he doesnt want etc etc that has led to him being violent or destructive . Trout what you say rings true . He would not behave like this with anyone else and like i say hes doing ok with his work and behaviour at school it seems , feel like he just doesnt have any respect for us , that maybe were too soft , but then again consequences just arent working and hes the most manipulative person ive ever known .

Hes kicked off today again because i said he had to come off the pc (had gone on it when i had already said no) and then when he had hurled an insult at me and dh had said that meant no tv now ( as agreed and printed on ds2 rewards / consequences chart) thats when he progressed to intimidating , threatening , tipping packets of crisps out all over and breaking my stuff.

£4.99 here thrifty

fabulous trout thankyou

Just realised... There is a new edition ( new improved and expanded) out now ( that is the old one)
New edition is £ 12 ( and a bit) on eBay atm

ok thanks

If you look at the 'How to Talk to Children' they also do a teenager version which might be more appropriate for you and your ds here

There is a book called Understanding Pathological Demand Avoidance in Children, that I bought when I was looking for some new strategies to help with Dd3.

She definitely doesnt meet the criteria at the moment but whether she will as a teen I dont know.

If I hadnt lent it to someone you could have had it. It was off amazon though and not silly money, or try your library they might get it for you.

thanks , ye , i could ask the library.
getting very desperate . think he has finally fallen asleep after another horrific day . had allsorts of food and things thrown in my face , rubbed in my hair, shoved , pushed , followed around being poked in the face etc worse the stuff he says , how he hates me so much and that hes just a fucked up mess etc etc and then the last few hours have been remorse and suicidal talk . I know he wont go to school tomorrow either no matter what i say or do as he will say he feels too sad / angry and i just dont know what to do anymore .

thankyou
i will check it all out
your right we cant go on like this , ive been saying that for 2 years now though and getting nowhere