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To what extent should I accommodate autism?

(49 Posts)
Eulalia Mon 28-Mar-05 20:50:26

Not sure if that is the right word to use. What I mean is how much should I make allowances for autism affecting ds's behaviour and to what extent should I try and teach him 'normal' behaviour?

After a home visit from the Earlybird team it was suggested that we try some form of discipline on ds for his constant hitting of his sister. We felt that he has to learn that he can't just get away with hitting whenever he feels like it. I am in two minds about this. Firstly I don't know how easily (or if at all) he can control himself. I think he tends to hit and realise straight away that it was wrong. Other times he is CERTAIN that she should be hit because she has done something WRONG and I can't seem to convince him otherwise. I know that he finds her annoying as toddlers are annoying to him. I tried the time out (putting him out of the room) but he kicks the door and screams and I don't know if it is working or maybe I've not done it long enough. She also suggested a reward chart which I've to get round to making up.

The other main question was about expecting other people to make allowances. Was at a soft play area today, one that we often go to but this time ds decided he wanted to stack up some of the soft shapes into an entrance. It was kind of blocking access for other kids but there were other ways to get in. Some boys were helping him and ds was basically ordering them about. Then they decided to take them all out again and ds was furious. As he got more annoyed one of the boys was deliberately doing the opposite thus winding ds up even more. I tried to pull ds away but he was kicking and screaming and I could hardly reach him and it wasn't easy with a 5 month bump. ds kept hitting this boy who was about 7 and he was starting to hit him back. In retrospect I maybe should have asked to speak to his parents and asked them to ignore ds. Do you think this would be best as I don't want ds to stop interacting with others as he seems really keen on talking to people and wanting to 'play'. However if his 'interaction' basically consists of issuing orders to others then its maybe better that they don't 'obey' him thus reinforcing his behaviour.

Sorry for the long post. I am finding ds hard work just now. He seems to be interacting with the world more now which is good ... talking more etc but it's as if his expectations have taken a huge leap and he wants things to be HIS way even more.

Someone tell me this is just a phase please...

Shazzler Mon 28-Mar-05 20:59:13

My cousin is autistic and all I know is that consistancy is the best policy. He needs to know that there are boundaries and consequences for his actions. My cousin is great on a one to one but finds crowds more difficult.

Must be difficult for you, especialy being pregnant.

I'm not sure how you tackle what other people do. Thats a difficult one.

Keep up your good work.

RnB Mon 28-Mar-05 21:06:56

Message withdrawn

coppertop Mon 28-Mar-05 21:11:20

We had a hitting phase here, although to be fair to ds1 it was mostly ds2 doing the hitting. We now have a strictly zero-tolerance policy with this one. Ds1 usually knows that he's done wrong and takes himself off to his cardboard box to calm himself down. (This is a huge box that he likes to retreat to when it all gets too much). On the few occasions that he doesn't take himself off there I tell him to leave the room. He gets upset but goes. Ds2 gets similar treatment. I don't think he fully understands yet as he doesn't have the comprehension but if he hits I say "No" in a fairly neutral tone and take him out of the room. This is usually enough to calm him down. I must admit that a big part of the reason why we extend this to ds2 is so that ds1 can see that "No hitting" is a house rule that applies to everyone. He is very big on following the rules so this seems to be working.

We have had a lot of problems with ds1 policing ds2 and other children but this seems to be improving. At home this has taken a lot of reinforcing of "No grabbing <ds2>" and "Only grownups tell off <ds2>". There are still lapses but we seem to be heading in the right direction at last. The school is also reinforcing the 'no policing other children' rule - although in ds1's case it only seems to get out of control when he's ill or overtired and loses all his tolerance.

We avoid softplay centres like the plague after having a few bad experiences there. Our local support group hires out a softplay centre for autistic children and their families. It doesn't happen very often but it gives ds1 a chance to be himself without having NT children trying to bully him.

I think our general rule is that autistic behaviour is okay as long as it doesn't affect the rest of the household too much. Ds1 and ds2 have to learn that there are limits to what we will tolerate. Ds1 went through a phase of wanting to watch videos over and over every day, for example. This was just too restrictive for us and caused too much disruption. Ds1 now knows that Sunday is video day. The rest of the week the videos stay in the cupboard.

Jimjams Mon 28-Mar-05 21:11:39

I agree with rnb really- and ds1 has a lot less understanding than your ds. I don't think that ds1 will ever live in the real world, but he still needs to understand acceptable behaviour (to make it easier for future carers).

Having said that we're not really managing to get out anywhere with him at all so it's difficult to teach much.

Jimjams Mon 28-Mar-05 21:13:40

ah we have the same rule coppertop- if it affects others it's not allowed.

Jimjams Mon 28-Mar-05 22:26:07

Eulalia thinking about things you can do. if ds1 hits either of his brothers (actually he doesn't hit but he does pinch) he goes out of the room. if he carries on he goes to his room, and is ignored in the process. This week he is trying to make his croothers cry (so he can see inside their mouths I think). I make sure he doesn't see inside their mouth and a put him outside the room briefly.

I think the attempts to control others play is harder to deal with (from talking to friends - we're not at that stage) - I think most friends use social stories or hope that schools will provide some help.

Jimjams Mon 28-Mar-05 22:26:34

croothers? brothers!

Eulalia Tue 29-Mar-05 10:31:42

Thanks very much. My gut reaction is that yes he has to learn for his own sake. They have been successful at school so obviously he CAN learn. I just need to persevere more. He seems to have no idea of the difference between adults and children and if I say "mummy does this", he just repeats it and says "ds does this". He is no fool and needs a reason WHY mummy is in charge. The school I think just try to say We don't do this by example which is easy in a structured environment. I know it will get easier when dd isn't 'in his face' so much and in mine too.

Not sure about the soft play areas - it is one of the few places we can go to. I have to go out otherwise I'd go mad (there is very little to do at home and ds and dd often ending up fighting) and of course it has been raining all week so park/walks aren't possible. Also I have to think of dd. I think I'll just have to go when it is quieter. I met 2 NT friends yesterday and have to go when it suits them as well which may mean it is busier. To be honest I just felt alien the whole time I was out - I don't think they appreciate how hard it is for me (and him) and I feel I can't relate to them or all the other people there. I took hte kids out on my own on Friday and had a great day as I didn't have this constant reminder of 'normality' apart from strangers of course. So if it means not seeing my friends then so be it... at the moment I don't really care. ds loves these places and so does dd so I am unwilling to stop them just yet but will make sure we go at quieter times.

Sorry I am rambling, but thanks RnB I need I kick up the ass. It is all to easy to let him get his own way for the sake of peace but its not helping anyone.

Feeling quite upset about this as for some daft reason I was holding onto the hope that he would get better when he was older but all it does is present fresh problems and challenges. I keep thinking about the original diagnosis where they said he was 'mild' and even seemed to have a problem making the diagnosis.

And thanks coppertop - he doesn't like being put out the room so will keep up with that.

Eulalia Tue 29-Mar-05 10:32:30

coppertop - how do you manage without videos for 6 days of the week?

Twiglett Tue 29-Mar-05 10:46:42

About softplay and interaction with NT children, have you tried explaining to the NT children why your DS is acting / reacting that way

I know it may be very difficult but is there not a way in simple terms that you can explain how he doesn't understand and why he is reacting in that way - I have found that most children understand at a far better level than adults do and adjust their behaviour accordingly quite naturally - my 4 year old DS (NT) totally understands and adjusts his expectations / behaviour around children with Special Needs

Eulalia Tue 29-Mar-05 10:57:29

Thanks twiglett. That's what I meant when I originally said about explaining to the parents. I'd rather the parents said something to their own child. ds generally doesn't march up to other children and demand to play with them, it's usually when they are interferring with something he is doing so it may be better to ask them to keep away. I don't feel he is missing out on learning about social interaction because he gets plenty of this at school and its better from adults at the moment.

He will sometimes chase other kids if he sees them running but this very crude play doesn't seem to be a problem.

Better tear ds away from the telly. We are supposed to be swiming today but dd is a bit poorly so not sure what to do... still pissing it down outside. The joys of school holidays!

KarenThirl Tue 29-Mar-05 13:16:03

I'm really pleased this thread was started because I've been thinking about this for a while, and more so over the weekend. I posted on another site about 'conforming' to acceptable behaviour, saying that I felt J was capable of doing so in certain areas and that if he can do it he should be encouraged to do so. One mum posted back advising against this because her own son, now 18, was very late to be dx with AS because his condition was so mild and he was an expert at conforming where it was needed, but as a result he's now far more obviously autistic. She cautioned against forcing a AS child to conform for this reason.

So, I was left thinking ... what's the difference between encouraging an AS to conform to society's expectations, and expecting him/her to abide by 'house rules'? Surely (IMO) most responsible parents' house rules are a reflection of what society expects? Surely we have to continue to encourage positive, dare I say it NT behaviour, in our children because it's NOT acceptable to hit people, or shout at them, or.. or... or.. etc.

I strongly agree with RnB about the world not changing for our kids, and they have to adapt to have a chance of integration. This thread has helped me to see that I'm on the right track.

coppertop Tue 29-Mar-05 13:39:04

The first couple of days of the "no videos" rule were tough but we were lucky to be able to distract ds1 from that. IIRC it was decent weather outside at the time so I organised things for the boys to do outside - mostly involving buckets of water and water pistols.

He soon got the idea that we only watched videos on a Sunday. This also helped during the holidays. Monday-Friday his routine had changed (no school/pre-school) but still watching videos on a Sunday gave him a kind of normality IYSWIM.

dinosaur Tue 29-Mar-05 13:43:45

Sorry I've only just seen this eulalia.

I agree with RnB, Coppertop et al. We've just found with DS1 that we have to keep plugging away at the "no hitting" thing. DS1 does seem to have got better - less controlling, more flexible - as he has settled in at school.

atm the biggest challenge is DS2 who is nt but for some reason going through a sort of belated "toddler tantrum" phase and does provoke DS1 a lot (he provokes me, too!).

Eulalia Wed 30-Mar-05 09:40:41

Yesterday much better, we even went into town and into shops. Probably OK because dd was a bit off colour and sat in her pushchair quietly. ds loved looking at everything, security cameras, mirrors etc. Then I went with my sister to the Maritime Museum and apart from getting 'stuck' at one point and had to be dragged away he was fine.

coppertop - ds does like to play with his toys and we do have videos off in the evening when dh is there. But I have to have them on when I am cooking or doing something out of the room as its the only thing that him and dd will sit together quietly with. They do sometimes play together for isolated incidents of about 10 mins max or will do naughty things together like throwing stuff, running about and so on. We never watch TV except sometimes Saturday mornings.

Must get ds out of bed - his routine has totally gone to pot this week.

coppertop Wed 30-Mar-05 13:19:51

I use CBeebies to keep the little monkeys occupied when I'm busy. The only reason the videos 'went' was because no-one could go anywhere or do anything when ds1 'had' to watch his videos. We're by no means a TV-free house!

I managed to get ds1 out of the house today for the first time in days. It was such a relief to be outside again that I almost didn't care about ds2's meltdown in the pushchair in the middle of a busy shopping centre. Still counting the days till the holidays end though.

Eulalia Wed 30-Mar-05 15:41:34

I don't feel so bad now coppertop

ds's latest is directing my driving. He tells me to drive faster or slower and gets annoyed at traffic jams saying that I can move over to a certain space. Asks why we've stopped if he can't see the traffic lights. Also tells me to stop using that 'clock' (the indicators - he thinks the ticking noise is a clock) and then if things don't happen in the right order goes on about something that happened a mile back for ages. Usually because I have said something at the wrong time and I have to re-say it so he can say his bit at the right time..... he never shuts up and I thought it would be easier when he was talking but so much of it is useless talk ...

Also if I leave him in the car at all he opens all the windows, including all those little side ones, switches all the interior lights on, adjusts the mirrors etc... and I wonder why I never seem to get anything done in the house

maddiemo Wed 30-Mar-05 17:17:23

Only five and a backseat driver already

I really feel for you with the consistency issue.
It was driven home to us on our Earlybird how important this is but is so much easier said than done.

It is also so much harder when you are tired or under pressure.
Keep going with time out and rewards, but don't forget to reward youself for a job well done too.

Hope the pregnancy is going well.

Eulalia Thu 31-Mar-05 13:34:06

Thanks maddiemo - yep baby is doing just fine - I am lucky as I have easy pregnancies.

Today was great - as an experiment I took ds to dd's toddler group. Even dd is the oldest one there so most were babies and up to about 2.5 and he was fine. For ages I couldn't take him to these groups as he'd fight with the toddlers but now the age gap is bigger it was much better. He did shout "get out of the way!" a few times and made a lot of noise with the toys and I had to stand in the middle of the room while he pushed this tractor around (still can't peddle) but nothing awful happened. I got a fright as I found his head in a pram of a newborn who was crying. However he was very gently patting the baby's tummy! He also patted this little girl he'd bumped into.

All this gives me so much hope - I know a lot of it was luck and the context and just that no-one contradicted him but it's a good sign that he can be a really nice boy. I want to keep taking him out as much as possible whilst keeping eyes peeled of course as its good that he has as much social contact as possible.

Also time outs are beginning to work - not stopped the behaviour yet but he seems to be understanding why we do them.

Sorry to be wittering on - just feeling much happier today.

And it's stopped raining at last and we got a walk on the beach too.

coppertop Thu 31-Mar-05 13:38:28

Awwwww! It sounds like a great visit to the toddler group. Bless him, patting the baby.

I took my 2 to the local library yesterday. A woman had put her baby on the carpet. Ds2 gave a shriek of joy and shouted "beh-beeee!" (baby). I don't think I've ever seen a woman move so fast to pick up a baby.

MrsFROSTgetful Thu 31-Mar-05 14:38:31

haven't read all this thread- but read your original post- and every day i feel the same at some point....from questioning whether i am 'ignoring' important behaviours which need addressing (is it 'naughtyness...or is it Autism?)....to (on a good day) feeling the DX's are all wrong and feeling a fraud.....to then being given a 'slap round the face' as if to remind me what we are dealing with.....

For me- when we are home i feel i 'get it right' most of the time- i am aware of triggers that start the meltdowns etc and even feel 'confident' enough to even 'test/stretch the boundaries' so that i see if (particularily leigh-age 8) can cope with 1)change to his routines 2)less 'social story' type intervention or 3)tolerate his 'boat being rocked) for a bit longer than before.

However for me- outside the home is still difficult- and Alex-age almost 6 .... probably poses the greatest difficulty here as he quite simply has cr*p social skills.... and like a toddler, i feel i need to watch/assist everything .....if other children are involved.....but if (like at butlins last week) he is 'allowed to just run round in circles....then i have no anxieties....but as soon as someone wants him to 'conform' to 'normal' age appropriate stuff i get stuck.


Sorry to witter on...... just hope some of this is relavent to YOUR thread!!!!XXXX

Christie Thu 31-Mar-05 15:42:50

Message withdrawn at poster's request.

MrsFROSTgetful Thu 31-Mar-05 18:40:53

That is so well put christie.....I've just took my 3 to mcdonalds for tea....and feel like i've been on a 100 mile run!!!

coppertop Thu 31-Mar-05 18:44:56

<peeks round the thread at MrsF>

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