How to manage ASD behaviour?

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DS2 was dx with ASD 2.5 wks ago and both me and DH are struggling to come to terms with it, although we were expecting it. DS is aged 3.5 and will start school in sept. I need to know how to manage his behaviour? DS is currently receiving help from the specialist early years service, SALT, and autism outreach will start work in school in sept. We are going to be advised about an earlybird course which will be in sept, but we could do with some advice. DS has a CD/DVD obsession and will do anything to get his hands on a CD/DVD. He is obsessed with a portable CD player we have, the stereo, going in the car is a pain as he chooses the CD's and shouts at us from the back if we're not playing the track he wants. We can't go to people's homes as all he will do is mess with CD/DVD. He won't sit and eat at home - he would rather get up and wander but if he can mess with CD/DVD he will. He gets very distressed as soon as we go into nursery as he is desperate to get his hands on all their CD's.

How do we manage this? Do we remove all CD's/DVD's from the house-as far as practically possible, but then he gets very distressed.
He also gets very frustrated and screams a lot as he has speech and language delay. We don't know what to do for the best, and how best to handle this as we're not getting any support with his behaviour.
All advice gratefully received.
Thanks

Predictible from me but get in a behavioural analysist to give you some skills and perhaps set up a short or small programme for behaviour management.

Also predictable from me.. is part of the frustration about lack of lang/communication? what has the SLT recommended are you using PECs or signs or symbols maybe to support communication?

We had a similar obsession.

Very wearing it was too. Got sick of Disney trailers (he only ever wanted the trailers, not the actual films)

We removed them from sight. He didn't like it at first.

His behaviour has improved as his speech and language has. Not perfect by any means! NHS SALT is rubbish round here so we paid privately and it was worth every penny.

We also have the CD in the car issue. We made a new rule which meant all the people in the car take turns to choose a track. Again, he didn't like it at first but he can do it now.

I think the way forward when dealing with ASD stuff without losing your mind or patience is to think like they do. Try to modify behaviour slowly as possible. As your DC's language comes on you will be able to explain more.

I remember thinking when my DS was between 2.5 - 4.5 that it was unrelenting and terrible and all the rest; tantrums, frustrations, headbutting pavements. It was awful. It is a really hard bit you are going through right now.

Keep the faith and get your DC some SALT. Use pictures, signs, anything visual to get through this bit.

We have had some SALT-NHS. An initial observation and then referral to a play group. we went twice and on the third session they gave us a written report with some targets on. They've been very helpful. They have also been into nursery and have given them targets which will be reviewed in April and will continue to monitor him when he starts school. We are using PECS at home to reinforce 'sit' 'eat' at mealtimes, with some slight improvements. His speech is coming on, nursery also use PECS cards with him for some things. Every time we say 'No' to him or tell him he can't have something he will scream for a few mins and usually it's forgotten, but this mornings CD tantrum at nursery took 30 mins for him to calm down. The CD things is very wearing, as he wants each CD/track for 10 seconds each and then on to the next one. We have removed all DVD's, they're all in a locked TV cabinet that you need a key to open and all DVD boxes are up out of his way. We don't know how best to tackle it? Just refuse and don't give in? Also, he stims by making a percussive beat-box noise-frequently. Do we just ask him not to do it when he is doing it, try and distract him etc? He does it frequently. Please help, we don;t know what to tackle first, and where to start really. Also, how do I find an ABA tutor or such like?

No idea about ABA stuff. Someone will be along in a while with something on that I should imagine.

Stimming? I let my DS stim. I see it that he's letting off steam. He tends to do it in the evenings. We also have a rebounder in the front room for extra bouncing. If it provides him some comfort then I have no issue with it.

Can I suggest a personal CD player? ELC do one. He can play all he likes with that one. Comes with headphones. Maybe limit his choice for a while. By the sounds of it, he cannot cope with selecting a number each day.

The NHS SALT you are getting sounds good. We had some too but supplemented it with private stuff.

I hope you've applied for DLA? That can help pay for stuff for him.

As my DS has got older I have used his obsessions to my advantage. Currently his thing about maps is helping him learn a lot of geography...

Thanks, i have tried an MP3 (he also likes the ipod) but he didn;t like the headphones. Think we need to perservere with that one as days out, holidays etc will be a flipping nightmare with DS2 and his CD's in the car. I have my DLA form and have started to fill it in, but will give it a go at the weekend. Not sure if DS's stim, is a stim, but he makes the noise all the time, when happy usually and not focussed on a task. when he's focussed on something he does not make the noise, but it's not just when he's stressed or upset, usually when he's happy and pottering. Will leave it up to the school if they find it disruptive. Thanks for the advice.

I agree with Starlight - you need some practical advice about how to handle day-to-day life. Both for the good of the family, and for ds's benefit in terms of development.

He is still young, which is great as early intervention has a good chance of successfully helping change behaviour.

First things first: if you want to eradicate an obsession (current example being the CDs) you have to ignore it, talk over it about something completely different, or distract from it. But be prepared for some major tantrums when you do so. Persevere with the ignoring/distracting, be prepared for ds trying every trick in the book for getting what he wants, but do not give in, and do not acknowledge his tantrums. If it takes 10, 20, 30, 40, 50 minutes, ignore it. When he has calmed down (which he will, eventually) you can engage him back into the conversation, but not about the CDs but something completely different. The message he has learnt is that you will give him attention, but only if his behaviour is appropriate. If he screams and yells he won't get what he wants. When he is behaving brilliantly, calmly, and is engaging with you in the way you want, reinforce it constantly with attention, praise, affection, food, toys etc.

This is the basis of ABA. It is a pretty intensive full-on approach which, if you want it to have the best results, you have to be prepared to do consistently and whole-heartedly. It is full-on and hard work. But if you do, you are almost totally guaranteed to see a major improvement in his behaviour, communication, and development. The major downside is that it can be expensive. Consultant/tutor costs add up. But you can do lots yourself (starlight could tell you more about this).

Can you tell we're doing it with ds?

My ds is coming up to 4, was dx with asd when he was 3.5. We started ABA about the same time, and it was the best thing we could have done. We have had offers of similar support to you (SALT playgroups, early intervention officer supporting at nursery etc) but none of this has had any effect whatsoever on ds in terms of day-to-day behaviour management, or development of communication ability.

I can happily wax lyrical about the benefits of ABA for ages, so let me know if you want to know anything more.

Bialy-yes please. We can look into ABA tutors but I am worried about the cost, although if we get DLA it could contribute towards it. I will probably be reducing my hrs at work in sept once DS2 starts school so that I can pick him up, but need him to go to breakfast club at school or childminder before school (another story!!).
Bialy-how did you start off, did you read any useful books to get you started. I understand the basic principle but it's how to do it in day to day living at home. I agree, DS2 is getting intervention but it's not making any difference at the moment, but he is young and we need to do something that will make a difference.

Headphones can be a sensory nightmare for a good number of us on the autism spectrum. They really hurt. Worth having a look round for very soft ones, or seeing if he will wear a soft pull-down hat and put the headphones over the top so they're not directly against his ears.

Not sure how much use this wll be but DS1 had / has a bit of an obsession with CDs and DVDs (4.4, ASD and speech delay). He likes to spin them, both in the box and out of it, also put them in and out of the machine, turn the machine on and off again. So for us it is as much about the machinery of it as the actual content IYSWIM? First of all he would listen to only one CD and then expanded his interest (all nursery rhyme ones really).

So things we have done; he's told there are "playing CDs/DVDs" and "watching" or "not playing" ones. So he can play as much as he likes with old CDs where he often likes the colours as much as anything. Means there are often CDs all over the floor but hey, that's okay! With "watching" or "not playing" he has learnt that he has to ask mummy or daddy to put them in / out (to avoid scratches). He has an old CD player in his room which he can play with, he likes to spin them himself (a dj in the making!)and one which we use to play the CDs he likes. We found this also helped with him making choices about which CD he wanted and requesting certain tracks (one man went to mow) was one of the first improvements with his speech. He likes to bounce on his bed whilst listening to these and I am fairly sure his mattress is well on its way to complete failure but it let him expend a lot of energy this winter. We also got a portable DVD player and again he could request that and play with it and it didn't interfere with anything we were doing.

He's less interested at the moment and now prefers throwing things down the stairs.... God I miss the CD days.

We've never even hinted that he could play his CDs in the car. My mum suggested it once but I shusshed her pretty fast! Does taking his own CDs to play with help if you go anywhere? And in extremis, most people usually have one or two they don't mind losing.

I think I'd try to give him a set CD time - with a timer and everything, where he can do what he wants and then any other time it isn't CD time so he can't have them

that way you're not stopping it completely and he knows he will get to play with them, but there are strict rules in place to stop it being a pita, lol

The book, 'Let me Hear your Voice' by Catherine Maurice (available from Amazon) is brilliant on the basics of ABA. We have started a programme of ABA for DSS who is 8 and I wish, wish, wish his parents had have started it years earlier (which, for a myriad of reasons didn't happen) as the earlier the intervention, the better the results.

Robert Schramm - Educate Towards Recovery is good, though is full of terminology which you have to get your head round (once you do it all makes sense).

It's on the Verbal Behaviour approach of ABA (which we're using), which is a newer approach and focuses on teaching within the natural environment. (Eg at the moment we're teaching ds how to use appropriate language with his peers such as 'what are you playing', 'can I play too' etc through dressing-up and role play such as doctors/firemen/superheroes. It is brilliant fun for ds and he doesn't even realise he's being taught!)

You can work on anything - reducing tantrums or other inappropriate behaviour, aggression, obsessions, repetitive play, expressive/receptive language, toilet-training.... whatever you want the programme to focus on.

We have a programme run through a consultant, who sees us every three/four months, a supervisor (appointed by the consultant) who sees us every few weeks, and tutors who we employ ourselves. We have about 25 hours a week with tutors, both at home and nursery.

It is a bit daunting setting it up if you do it yourself, but once it's up and running it just sort of runs itself.

The organisations Peach and UKYAP will set the programme up for you, but I don't know too much about them (others here will do - search old threads for ABA). Maybe start a new thread about this too.

Funding - we've been totally self-funding so far, but are int he process of statutory assessment for a statement, and are asking for full funding. Doubt very, very much we'll get it and are anticipating a tribunal, and even then don't know if we'll be successful!

Have you thought about applying for a statement yet? If you do, and want to ask for ABA funding you'll need to gather all the info very thoroughly to prove how effective it is, So you may have to prepare for paying for it yourself, at least initially, so you can demonstrate how it's worked compared to any other strategies employed by other agencies (SALT, nursery, outreach etc). Everything is recorded in minute detail so you can clearly show the progress made on specific targets, which is good evidence to show that it's working.

HAve to rush off now but can give you more info about costs etc if you want.

Where do you live? Might be worth joining local NAS group to meet other parents - I've met a few locally who have also done ABA so it's a good way to exchange information.