challenging behaviour

[Jimjams]

Just been to a really interesting seminar run by spectrum- an ASD charity that runs residential homes for adults and has a small ASD school (similar to treehouse I think).

One of the talks was on challening behaviour- and was really interesting. He talked about the importance of reinforcing positive behaviour and not punishing bad behaviour. Also talked about the purpose of behaviour and how it is communication.

Anyway one really interesting thing he said was that if you have an ASD kid - it is really important to "do your stuff first, kids stuff second" (even if your stuff lasts literally 5 seconds). He went on to talk about how with an NT child you let them lead and you give give give because you know that in the future you are likely to get something back. He used a funny example of saying "lets go into the garden to play cricket". then your leg catches fire. The NT kid would worry about your leg, the ASD child would be saying "but you said we could play cricket". So from the beginning do your stuff first. It kind of made sense when he said it.

He gave lots of real life examples of challenging behaviour that they had had to deal with and get round. And it struck me that if you can find a professional who really really understands autism then you can get so much help from them. They understand the reasons behind the behavaiour and have the expertise to draw up programmes to deal with this. So if you get stuck on something tricky then its really worth trying to search someone out. Our autism outreach team are very good as well (they were there tonight) so for school age children they may be worth trying if someone was struggling.

Again thank you all. I'm sorry for hijacking your thread Jimjams

I went to the library to day and picked up several books on autistic spectrum and aspergers (cue ds having a tantrum because i wouldn't let him on the computers )

A lot of his behaviour fits, but in one of the books it had a chart where you had to have a certain number of behaviours in each category for dx. While some of them fitted he didn't necessarily have enough of the behaviours in all of the categories (IYSWIM) so where does that leave me???? Does that mean it isn't aspergers??

He scores quite highly on the scale Maryz posted. For example, he flaps his hands and can't sit still when excited, he has an exceptional memory, he's quite a loner (and does far better one-to-one), he's quite self absorbed, he has obsessive interests, he reads obsessively, although not just non-fiction, there is also lots of made-up language like Scummy mentions above. One of the most trying things is he gets an idea into his head and it is repeated and repeated and repeated. He doesn't seem to know the difference between a gentle 'that's enough now' and a very firm 'stop, now' he can't seem to guage the fact that I'm getting cross. He just doesn't know where to stop.

Scummy, he is a wonderful boy. A loving, affectionate, funny, just nice to be around little boy. But his behaviour has taken a turn for the worse recently and I am finding it hard to cope. I just feel like I'm letting him down with the way I am dealing with the behaviour. Family life at the moment seems to be battle after battle. Lovely moments in between, but just too much conflict.

It's nice to hear the positive comments about overcoming the problems. I just feel a little lost.

anais - come to this discussion a bit late, agree with what everyone has said here... personally I'd say it has made it easier for us to have the diagnosis and for ds too. ds is on the mild end of the spectrum. The thing is that it is a spectrum so at some stage there is no definate yes you are autistic and no you are not. The diagnostic criteria are only there to help to come to a decision. Some cases will be borderline. If you think your son is on the borderline then maybe better to know that than know nothing at all... also have you ruled out any other conditions/problems which he may have? You don't necessarily want to get stuck down the AS route?

Good luck - I was very hesitant about referring my ds at first but I have no regrets now.

Eulalia, I think we've ruled out the other options - I'm pretty sure he's not autistic, and add/adhd don't fit as he has great concentration if he's interested. I have looked through the descriptions of related conditions in the book I mentioned before - could there be any others I've missed?

Anais- I've posted about this on another thread today (see beahviour - and difficult 5 year old thread). I've posted some links to the Sally-Anne test. This might give you a better idea of whether or not he is AS, or whether he just has some AS type traits. Children with AS can pass the Sally Anne test- but probably not at age 5.

Did any of the books give any behaviour strategies- they work well with NT children as well- so don't be worried about using them whether or not he is AS iyswim.

anais - I think some children are just very mildly affected. Apparently it can blend into eccentricness in some people so I can see that you may not want to make an issue of it and make him different but at the same time he wants to feel that he is being understood. It is a tricky one. But as Maryz says you can manage him as though he does but maybe leave off the diagnosis for a year or so as he is still quite young???

I haven't finished reading the books, so haven't found the behaviour strategies yet. I think that's going to be the most impotant thing - finding ways of comping with the behaviour. I'm still not convinced that a formal diagnosis will actually make very much difference to our lives. But we do need to find coping mechanisms - ways of dealing with the behaviour. I think you're right about seeing if treating him as if he does have it helps.

anais, sorry to hear you are going through this just now. I have worried about my own DS1 on and off and have to say my thoughts about him are turning towards something on the autistic spectrum again. If there is anything wrong with him he can only be mildly affected as he seems to manage well in nursery etc. What you said about your DS not being able to guage where to stop rings huge bells with me, my DS1 is just the same, it's almost like he has to push me to my limits, it is so hard to be calm. He has also become extremely obsessive about electricity and cameras (security cameras) and even better cameras getting electricity. I don't know how normal this is for a boy of almost five, I had convinced myself he was just an overexcitable kind of child but it gets very wearing. I don't know about a diagnosis either, he has seen a whole string of health professionals who all came to the conclusion that he was 'normal' (this was about 18 months ago), is it me or is it him?

Why do we Mums always blame ourselves??? I know rationally, that I will probably never know why or what caused whatever this is, but still I have been running over all the things I could have done differently...

Demented, what you said about him being 'normal' is what worries me. I suffered from depression as a child, and my parents were repeatedly told I was just naughty, and they really had to fight to get a diagnosis. I'm not sure I have that much fight left in me.

Yeah, ds has that obsessive side. His is maps. He will study maps for hours, and spend hours planning routes to various places and writing them out. He is fantastic at map reading, and if I get lost when we're driving (which I frequently do!) I just chuck the map at him and he tells me where to go!

I often wonder if the obsessive side is just all part of being male (males are a bit of a mystery to me, I am an only child and my dad was a long distance lorry driver often away for 2 weeks at a time so mostly it was just my Mum and I, now I've got three of them in the house, arrrrgh ).

Lol, is there any woman to whom men aren't a mystery???? Completely different species - heterosexual monogomy is a very strange concept, if you ask me

Sorry this is long, I've been waiting to find time to read this thread properly. Jimjams, I've been to a couple of Challenging Behaviour lectures (due to necessity!) and found them very useful. I've got a very good manual about it called, you guesed it, "Challenging Behaviour" by Eric Emerson. Research seems to show that this type of behaviour is usually communication, as you say, but it is necessary to work out the function of the behaviour before deciding how to deal with it, e.g. is it avoidance, attention, trying to express likes/dislikes and choices or even sensory? THe lecturer I saw (Dr Dougal Hare, can't be the same one as he wasn't very funny!) also talked about the sites of self injury coinciding very much with the sites used for acupuncture. There is also the theory that SIB either causes less pain due to increased endorphins being present in individuals with ASD and they can therefore tolerate more pain OR the SIB causing increased endorphins, thus marrying in with Paul Shattock's blood/brain barrier theory. THe problem we've had with SIB is that it is multi-functional and the function can change all the time, therefore it is hard to formulate a consistent response as the response would need to be different each time. I've tried ignoring, redirecting, reinforcing other behaviour but the one that worked best was me loosing my temper and screaming at him! But I don't like doing this and really don't think its a long term solution, as with all kids Ho hum, it is a complicated issue but very interesting. Dr Hare asked the audience (mostly SLTs) what they thought had been proved by research to be the most effective thing in reducing anxiety in individuals with ASD. Everyone came up with various ideas and the answer was..... trampolining! We go once a week and have the ELC mini one at home, highly recommended!
My view of anais's situation is that, whatever dx or label your son has or doesn't have, you need to try out some strategies to help with his behaviour as already suggested on this thread. It sounds like you can't continue as you are now so something has to change to help him, YOU and the rest of the family. Personally I think it's a very hard thing for parents to do alone and dx should give you more support and confidence as a parent. I think doing it alone is just too hard. I hate to be the voice of doom, but my observation is that behaviours and "symptoms" often get worse as a child gets older if you don't try to deal with them as early as possible. I know many people who felt that their child was not severely affected at nursery/pre-school age, but things get MUCH harder and more difficulties can develop as they get older. THey can also become MORE different from their peers without help. IMHO, the sooner you try to deal with the situation, the better placed you'll be to deal with him if he gets more complicated, difficult and different. And who knows, by helping him now he may improve so much that he won't need a dx, it does happen. If you can find out what works for you and your son and become good at it, it will become easier and more natural for all of you e.g. planning, speaking literally ideas already suggested here.
MY AS sister does not have a dx. I think it would have really helped her when she was younger but even now, it helps the rest of us be more understanding about her bizarre and eccentric behaviour (she's 46 years old!).

This guy worked for spectrum davros. The really nice thing is that they run houses for adults- and I found it very reassuring to discover that there are adult care facilities where autism is really understood.

Yes he made the point about working out why they are behaving in a particular way- and he used the example of someon kicking out when too stressed and then being given time out and them being relieved because they were then alone- so you actually reinforce the bad behaviour.

I know you'\re sceptical () but ds1's absolute worst instance of SIB was completely stopped by removing peanut butter from his diet (I don't avoid all peanuts now but I do avoid lots of peanuts iyswim). That certainly seemed to give a good demonstration of leaky gut. Honestly I have never seen anything like it (or so much). Even my friend with an autistic dd who can be quite "challenging" couldn't believe it when she saw him smashing his head against the car window. How he didn't manage to out his head through a window in that time I don't know. It went on for about 3 weeks until I cottoned onto the fact that he gone from eating peanut butter once or twice a week to having it twice a day. Took it - and 2 days later his brusies started to get a chance to heal Honestly I don't know what that stuff did to his pain receptors but he would just drop to the floor and whack is head on concrete as hard as he could- he used to glance around for somewhere hard before starting headbanging. Now he just hits himself reasonably gently on the chin when he's cross- much better.

Anais- it might be worth checking to see whether you have a behaviour support team near you. My friend's HV referred her little boy (who I think shows sime signs of AS) and the advice they gave her was all stuff that would have been said tto someone with an AS dx anyway.

I was very interested to read Davros saying

'I know many people who felt that their child was not severely affected at nursery/pre-school age, but things get MUCH harder and more difficulties can develop as they get older. THey can also become MORE different from their peers without help. '

I also think that things get a lot harder when children move from the security of Primary to Secondarty school. Having lots of different teachers, who have different expectaions of behaviour seems to make things a lot harder for the kids. To my mind the behaviour of almost all kids gets worse in secondary, add a pinch of Hormonal Angst and off we go!

Added to that kids get so tied into all wanting to be the same, that it makes it so much hadder for the 'square pegs' in the school. Any difference is seen as being 'wrong' by so many kids at the age of 14. And then many secondary teachers have a poor grasp of conditions like ASD/ ADHD. There is also less supervision of diet at lunch time and that makes such a difference to so many kids. Lively and fun before lunch, post lunch a Panda Pop fueled tornado hits the classroom.

I've been speaking to my DH today and he has been doing some research on the net about Aspergers, we both looked at some stuff and I think we agree that he probably doesn't have Aspergers just displays alot of the behaviour at times but his motor skills are fine and his social skills are vastly improved. However there are times when we go to friend's houses and he has lots of little playmates but instead of playing his spends his time examining the light switches in every room, he also has a thing about sockets and whether they are switched on or off. There are certain buttons on things that he always has to be pressing and will choose to do these things instead of socialising, the nursery have noticed this as well, although he will socialise sometimes freely and sometimes with a prod in the right direction. Amusingly one of the websites DH looked at had a list of obsessions and he recognised both himself and DS1 in the list so perhaps it's a family thing. Perhaps what I am seeing in my DS1 is a boy thing, all my close friends with children the same age have girls so I have nothing to compare him with (which is good at times). Anyway sorry for rambling it's just something that worrys me from time to time and Anais' post rang bells with me.

BTW I did the Sally Anne post Jimjams posted on another thread and my DS1 (almost five) failed although I realise that this is probably just an immaturity and probably not unusual considering it was not all that long ago he was considered to have a speech delay.

BTW davros- trampolines- we have a little one at home which ds1 loves- and asks for several times a day. Where do you go trampolining? Not to a class surely (sorry bad experiences of "oh yes we can cope wth a child with speech delay ion our class- poh no sorry we can't- this was pre dx so the gao is even bigger now!). I would love to take ds1 but know that the whole waiting thing etc would be difficult.

Possibly learning maryz. There was a discussion on one of my autism list recently. Quite a few of the adult autistics said that they could pas the sally-anne test as they had learned how to do it, but they were still caught out at times when they forgot that people didn't know what they were thinking. It sounded as if they had to remember that people couldn't read their mind- rather than just knowing that iyswim.

Agree that transition to m/s secondary is a very, very difficult time. I'm not sure how LSAs are handled, if they're allowed at all which, if they're not would surely be discrimination? All this talk of Inclusion, how is it going to work at secondary level with getting from one classroom to another and different teachers for different subjects? I'm just hoping that some of the parents I know whose kids are a couple of years older than mine will crack this but we are talking about special school here and its still a big worry
We go to a special needs trampolining session every week at a fairly local sports centre. They have 6 BIG trampolines and a specially trained instructor. Once a week its first come first served which we can't cope with as there have been times when its full, aagh! But they also run a weekly session that can be pre-booked so we stick to that. Its also great mother therapy as we get to see each other each week, jump on the trampolines and make fools of ourselves! Sadly they had a long break in the sessions due to an instructor leaving and we had to kick up a stink, using the "D word" (discrimination) and it seems to be back on track now. I also take my son to a special swimming session each week, aromatherapy at an SEN charity, Saturday morning club (ASD charity) and horse riding (riding for the disabled)!!!!
Jimjams, you're right, I am a sceptic about a lot of biomedcial stuff but not all of it and not for all kids. I really think it helps some kids but mine "doesn't fit the profile". As you know, I do think that I know lots of kids who are on complex regimes which are managed with great difficulty by their parents (usually mother) and it becomes harder and harder to evaluate as new and different things are tried. However, I really do respect some of the mums I know who follow biomed regimes for their children and some I think are barking! You seem to be quite a scientific person and pretty clued up so I'm sure you'd be in Davros's group A

cheers davros. I try to keep an open mind. SI think I do- because for example casein seems to make absolutely no difference to ds1- or at least not one that is worth keeping him totally away from all milk for. Must be the way his brain works (or the way his gut leaks- his Sunderland results said they couldn't see any problems with casein). Apples were fine with him as well- even though i know some children have problems and he seemed to crave them. We tried him apple free for a month- no difference- he has one every day now. The peanuts thing was amazing though- even had me gobsmacked.

I do know what you mean about too many changes. I think the trick is to do one thing at a time- give it a month (not a year!) and then review. The SUnderland protocol makes the point that there's absolutely no point in removing food if it doesn't make a difference. Something people can lose sight of I think. (And I can understand why- there are so many different diets and things to avoid it can get very confusing).

oh and yes I do agree- some children it makes absolutely no difference to. My friend's ds falls very much into that category.

Davros. I think I have ruled out dx - certainly for the time being. I think the key is behaviour management strategies - can anyone point me in the direction of where I might find some???? The books weren't all that helpful on that front - the only things that seemed (potentially) relevant were a suggestion of increased vit B6, and the idea of positive reinforcement and consistency. Positive reinforcement is something I have been trying to do as a standard anyway, but much of his bad behaviour cannot be ignored (I try to remove him if possible) and some days the praise itself causes more trouble (he seems to have trouble accepting praise ).

I will keep looking.

Demented, your post made me smile - the 'buttons' thing, is another of ds's little 'quirks' he can't see a button (cash machine, doorbells etc) without pressing them! And the thing about your dh - I think I have answered at least one of my questions here...reading through one of the books it was describing symptoms of adults with As. It could have been describing me....obsessions; inability to form and maintain relationships; (mis)diagnosis as depression etc. So now I guess I know where it came from.

anais, I'm sure you've made the right decision for now as you've made it based on really considering dx and not just avoiding the prospect. I'm sure I can recommend some books on behaviour management/techniques but need to give it some thought. Jimjams got one I suggested a whlie ago but I don't think it would be the right book for you. ALso, I'm not dealing with AS so you must take advice from those here who know more about AS kids, and there certainly seems to be a few here or should I say