when and what to do?

[SqueakyCat]

After a stressful evening with a wired little boy, I feel the need to know I'm taking action / the best action. My DS1 (age 3) has 'social communication difficulties' (EP says "can't diagnose, but if you were reading up, look into Aspergers") and while we began the process what seems like a long 3 months ago, we have nothing but a date of an initial SALT assessment, and have had an EP assessment.

What should I be doing for him? And what can I do to:

• reduce frequency of violence still further?
  
• reduce defiant behaviour? (increase frequency of him doing as requested)?
  
• improve social interaction?
  
• improve toilet training / other self-help?
  
• improve willingness to do things?
  
  He's a pretty able boy in many ways (delightful, intelligent, communicative, affectionate, happy, creative), and the frequency of me being at the end of my tether has reduced dramatically since the summer, but I still feel as if I'm trying to dress a cat.
  
  Now we're in the system, should I continue waiting till he's had more assessments, or should I .. well, what? where do I start?

[SqueakyCat]

sorry, ridiculous self-indulgent post - please ignore.

[SoBlue]

My ds asd 5 main problem is this although its improved alot from when he was 3. I found reducing any outings to the minimum so that he can calm down as once anxiety/frustration set in so did the violence and that still applies. I broke down everything into small sub sections and set small attainable targets ie going shopping only 1 shop, no browsing then building it up to 2 and a distraction such as a drink etc. Calming the atmosphere at home, visitors kept to min, restricted time of activities that over excite, near bedtime no bright lights(lamps only), no tv (too stimulating), story tape instead, bath etc. This all has been extended as he learns to manage better judged by calmer behaviour. I did do timeout on the stairs when he hit out with a 'no hitting' even if he didn't understand it was a quiet place to calm down for both of us. Where communication is involved i kept it very basic and describe what i want as they only take the first few words in.ie no running in the road its dangerous. 'hold hands or no running ' etc. Reinforcement and turning things into a game are the only incentive that makes him follow my wishes can be toy, sweet or simple 'good playing, walking etc'. We do alot of racing ie first to put socks on or i do what it is i want him to do and make it a secret/fun so he wants to do it. The main thing is to take the tension out of things so you can enjoy your time together sometimes that means picking the really important stuff and just leaving the rest till other things improve and they are more able to cope. This obviously is my experience but hope some of it helps.

[SoBlue]

Didn't think it self indulgent, i remember tearing my hair out wondering what to do by 3. However i do still have a full head of hair now he's 5 lol!

[jenk1]

Im still tearing my hair out over my ds who is 9!!!

He is at home full time atm as school has made his anxiety levels shoot through the roof, atm i do some workbooks with him in the morning and let him do what he wants in the afternoon.

I too keep visitors to a minimum and outings are practically non exixtent, took him to costco the other day and he was awful so not taking him shopping for a while, interestingly on NAS website they do a pamphlet about taking ASD kids out on trips/shopping etc its only £1 i am going to order it.

HTH

[jenk1]

Meant to add understand what you are going through, my DS when he was 3 was AWFUL and i put him in full time nursery when he was a toddler as i couldnt cope with him, i still cant really....

[coppertop]

If you haven't done so already then I would probably start with looking for general info about AS/ASD. I found in the early days that I often recognised the behaviours/difficulties described and it gave me more of an idea about why ds1/ds2 did the things they did. I would stay away from the heavier stuff for now though.

With the violent behaviour I would try to keep a short diary of times and events, noting wherever possible what happened just before the behaviour. You may start to see a pattern developing. Ds2 (2.11yrs) has rages that can be caused by sensory difficulties, frustration , tiredness - or they can be a complete mystery. If you spot some of the potential triggers then it may be possible to head off the violence before it starts or before it gets too bad. Removing ds2 from the situation and putting him into a quiet area helps him to calm down and avoid a complete overload. It's not 100% successful but it works a lot of the time.

Visual timetables have been a big success here too. You can use simple pictures and velcro them to a strip of card to let ds know what will happen next. Start with just one or two pictures at a time, eg "car" then "shops". Later you can add more. Knowing what is happening next has helped both of my boys to feel calmer about outings and activities. Just trying to leave the house in the mornings used to result in ds2 having the most horrific meltdowns. The first day I showed him the visual timetable the screaming stopped almost at once. I could repeat the words "pushchair then pre-school" until I was blue in the face (and ds2 was red in the face ) and it made no difference. As soon as I showed him the pictures it suddenly 'clicked'.

Ds2 is still in nappies as he has no interest in toilet-training. With ds1 it all seemed to click into place when we used a Social Story with him. He was a bit older though (just over 4yrs) so I don't know if that would be too much for your ds?

With self-help skills it can help to start at the end of a task and work backwards IYSWIM. I think it's called back-chaining? Eg if you wanted him to put his own trousers on you would put his legs in for him and pull the trousers almost all the way up, and then encourage him to do the last bit of pulling up himself. When he's got the hang of that you try it by this time only pulling the trousers up halfway and letting him pull them up the res of the way. The next stage would be for him to pull them up from the ankles. Keep working slowly backwards (with rewards) until eventually he is stepping into his own trousers and pulling them up all by himself. It can take weeks/months depending on progress and how keen your ds is but it often works.

Apologies for the loooong post.

[SqueakyCat]

CT - thanks for the most incredibly useful post!
And SoBlue and jenk1 for your advice and important reassurance that it's not just me.

I've read a bit about AS, and understand - in fact, I 'understood' quite a bit of his behaviour before I even knew he had a 'disorder', as a lot makes sense to me.

I usually know why he's being violent (stress and refusal triggered by frustration and not getting his own way) - I think I need to find a way to help him react in a non-violent way. I'm trying to train him to say "I'm feeling cross" rather than acting violently and sometimes he does (I can see he's very tense and he says "I'm feelign very cross" (which is actually ever so cute) and I praise him for 'telling me with words').

I think visual timetables and social stories should be my next action. As he's so verbal I'd thought that visual timetables wouldn't help, but perschool repotrs that they work well with him (they started using them for another little boy there). He's fine with going shopping, but if I could do one for our bedtime routine (current stress point) it might keep him going.

i started toilet training before I knew he had a problem, and he's very successful if we just take him through the day, but he doesn't tell us if he needs to go very often. We have a period when he does start telling us, then something happens (who knows what) and we're back to not being told.

And top stars for telling me what "backward chaining" means - the EP suggested it (she called it backward training) but absolutely could NOT explain to me what she meant. Not sure if it's what he needs - e.g. he can put on his jumper, and will when he wants to (about once a month) but simply won't on a daily basis.