Everything must stop!!

[Brook]

Hi all,

 

have been wanting to post this for some time now, it's a bit complicated really, but I'm praying someone can shed some light on this.

 

My son is seven dx ASD.

Quite a while ago he started to make people stop what they were doing when he needed to leave the room for something, he insisted nobody spoke, he turned the tv off, he also didn't want anyone to move, he basically wanted time to stand still until he returned (which was only upstairs for the toilet, or get something from his room). This didn't come across as so much a controling thing, if he heard you cough whilst he was out of the room he would start to 'cry' and 'scream'.

 

I really have looked into all the reasons it could be, and one that I thought sounded quite feasible:

I read somewhere that some ASD people take alot longer than NT's to piece together what is going on in a room and that all the info that has to be processed can take a hell of alot of effort, ie.. 'what sound is coming from where, who is sitting where, etc etc..'

I started to wonder if my son wanted us all to stop, so that he did not have to re-process all the information again, and this was his way of easing it all for him.

I could be totally wrong about this, but it did make sense to me.

 

Well, it has now turned into a kind of obsession, not only does he want everyone to stop what they are doing when he leaves the room, but if he hears you cough, laugh, shut the fridge door, open the window, etc..

he will come screaming into the room begging you to do it again whilst he is there and the exact same way.

As you can imagine, it is getting really draining on him and us.

 

If a car goes past when we are out in the street and he is not next to me at the time, he will shout and scream abuse at the car and become really upset because he wanted to be in a certain place as the car went past. He is constantly calling you to look at something on the tv and if you miss it he will become really stressed and shout for it to be rewound.

 

I'm just wondering if anyone else can relate to any of this? do you think it is related to his ASD? or does it sound like OCD? I really do need your opinions on this. PLEASE.

 

Brook

[Kathryn]

Wow, Brook, this must be having an incredibly disruptive effect on your life.

 

I'm not an expert on what and what isn't OCD but I think some children with ASD can develop obssessive compulsive tendencies. We saw these emerge in my daughter as she became more stressed at school and they were different to the obssessions she had for example, with wearing red or playing certain computer games (these were and still are, part of her ASD). She would have to shut a drawer or a door if it was open and if she brushed past anything with one side of her body she'd have to go back and do it again on the other side. She had lots of counting rituals that she had to do, and going out for a walk was a major undertaking as she was desperately trying to dodge the cracks in the pavement all the time.

 

Most of these behaviours have all but disappeared now she that feels secure and settled at college. Perhaps the compulsive behaviours and rituals were ways of trying to bring some order and predictability to in a world which was at the time, chaotic and unmanageable for her. They still threaten to emerge occasionally - when she walks across a room to shut a drawer, I know she is anxious about something.

 

I don't know if anything I've said relates to your situation, but I hope you find the answer soon for the sake of all your family, and a way to help your son who clearly isn't enjoying this either.

 

K x

[Zemanski]

he's found a way to make the world predictable - nothing is allowed to happen if he is not there

 

it solves many of his problems with theory of mind, as you say yourself, if nothing is allowed to happen when he is away he does not have to work at figuring it all out

 

unfortunately there is a clash between his brilliant strategy and the way the world works - you simply cannot stop the world.

 

I think you need advice from a specialist who knows your son and I think you need to address any underlying anxiety he has - the more you can stabilise his world for him in other ways the less dependent on this strategy he should become, but it may be difficult to unravel where the stress is and how to support him to reduce it. I would suggest that your son needs an alternative way(s) of dealing with his issues if he is to let go of this strategy.

This is ASD behaviour but taken to extremes it could probably develop into OCD and become all consuming.

 

This is a stunning example of a self-designed strategy for increasing predictability in the environment, it is so clearcut - the strategy is excellent in theory but impracticable in reality.

 

I am currently doing a paper on strategies for increasing predictability and stability - could I quote from your initial post, please? (I would not identify you or your son in any way)

 

Zemanski

[Paula]

Its so easy looking back to see when a certain obsession or type of behaviour started to surface but you didnt realy at the time think was a problem untill it had taken over everything.

 

I know boy do we know weve been there many a time with our AS son.Tiny little behaviour patterns that seem harmless sudenly becomeing more and more elaborate untill its a liveing nightmare.

 

 

Ive not been in exactley the same set up as you.But our AS son went through a very long stage of insisting that i sat in a chaire the same chaire everynight.No harm there.Then he insisted i sat in a certaine way.Then id to wear a certaine thing, on and on it went untill it was a nightmare.If i deviated from it in anyway hed scream the place down.

 

We also went through a stage where leaveing the house to go for the bus was horrendous.At first he insisted we only stepped of the pavemnent at this point,then he wanted me to say ziggy zam (I never knew why) as well as stepping of the pavement at said point,gradually over a month the routine was so complicated it took over an hour for a 10 minute journey.If any part was done wrong wed to start all over againe.Boy oh boy did that take some breaking.Took me three years as gradually i missed out this bit or that and let him scream.

 

 

It is a way i think of haveing things predictable and being able to cope.And in a way i do let him have his little insistances.But unlike when he was smaller and i want has experianced in his behaviour patterns i now dont let it get beyond one or two little rules of doing stuff.Otherwise life cannot be lived out properly.

 

Its a balance between what he needs to cope and get by and enable him to feel safe doing stuff and what us norms can accomadate without getting all angry.

 

 

You know what id do and i know itll be hard.Id try to say alter one little tiny thing each time like i did yes hell sream but when he realises its still safe and all is well with the world itll pass but it could take months.If yer can just get it down to a manageable level then itd be ok.

 

But it wont be easy and it depends how distressed he gets.My son used to scream untill i thought hed burst and die of screaming.Some things arent worth it.Its hard finding the balance.

 

Good luck.

[Brook]

Hi all,

 

Thanks for your replies, I was a little worried I wouldn't get any.

 

Kathryn, yes, you are right these obsessions are not the usual ones he used to have ie.. walking through the door first, being the one to flush the toilet even if he wasn't the one to use it, these have faded into the background and only come back on rare occassions. Also you are right when you say he clearly is not enjoying it. He has often held his head and said 'what am I going on about'.

 

Zemanski, I think that we are on the same lines here. My son was in a mainstream primary up until about ten months ago, he got so close to a complete breakdown, we ended up de-registering him, it was very heartbreaking seeing him in such a state. This actually all started around that time and think it had a very dramatic effect on him which we are still trying to deal with now.

I have had contact with our LEA to try and get him a place at our local special school, we have visited it twice and the structure and calmness of the environment would suit my son down to the ground, it is a MLD school and because my son has some isolated abilities ie.. self taught reading, they have said that it may not be suitable. My argument is, if he cannot access the learning in a mainstream environment because of all the sheer bombardments on him, then should this not be classed as part of a learning difficulty, he also struggles terribly with numeracy. His receptive language is two and a half years delayed, he must have felt like mainstream was pure hell.

For him to be able to function he needs to feel 'safe', and his need for predictability increased rapidly when he was at mainstream.

 

I really do think now, that it was his school experience that sparked this and although taking him out reduced his anxieties to a degree, I think that we needed to go deeper.

I strongly feel that this special school can provide the environment that he needs, they also set work to suit the individual abilities of the children.

Sorry I have gone off topic a little here, but I really am up to my eyes in it at the moment!

 

He has also started to want you to cough, sneeze, again even if he is in the room, I think this is because those things are unpredictable and if he gets you to do it again, he knows it's coming. (does that make sense)?

 

You are more than welcome to use my initial post for your paper, nobody will know who we are.

 

Paula, I too have tried breaking these things gradually, if he wants to turn the tv off whilst he leaves the room, I say just turn the volume down etc.. but he goes hysterical, the previous ones like flushing the loo etc were easier to deal with. Also like you I think his head will burst with the screaming.

 

Thanks again all, I appreciate it.

 

Brook

[Brook]

Forgot to say, we should know the decision about the school, by the end of next month.

In the meantime I am trying to write up a report about the reasons why I think this would be a

suitable placement. It's giving me a headache!

 

Brook

[Zemanski]

does your son have sensory issues? - hearing, vision (not actual eyesight as an ordinary optician would measure it but distortions and difficulty with things like glare, flickering lights) touch, etc

 

you mention he was 'bombarded' in the mainstream environment, this suggests that he may not be perceiving the world in a typical way in sensory terms and it is well worth investigating whether this is a central issue that might be destabilising him.

We discovered recently that Com (13) has prosopagnosia, which means he cannot even see a complete face and nobody was aware of it. The implications for how to stabilise his environment were huge and simply making sure that he has a well known person always in his immediate vacinity is what is most effective for him in reducing his anxiety (he needs no support for academic work, only for social skills and personal organisation). Other sensory differences may obviously lead to different solutions but it is well worth investigating.

 

Sensory perceptual issues in autism and asperger syndrome by Olga Bogdashina is excellent on this topic and gives a basic assessment profile you can use for an initial investigation at the back - if it shows up anything you can then ask to see specialists for proper assessment and advice

 

Zemanski

[oracle]

I have to agree with what Zemanski has posted but would like to add something which may or may not be relevant as it's just my take on this. We have this to a much lesser degree with Matthew and since you posted I realise that we had this to with David at around that age. At the time he had no dx.

 

One thought here Brook, and it is just a thought, but does your son know that a return to school could be on the cards? I ask because maybe this is his way of freezing time while he attends schools. Your post struck a cord because when David was that age when he came home from school, a place he hated, I had to give him a second by second account of what I had been saying, doing etc all day. I do mean a second by second account. At the time I thought that it was just David felt that he was missing something while he was at school. To an extent I suppose it was but now I feel that if David did miss things he felts that he had been excluded from the family and that left him feeling out on a limb. Does that make sense? I am not good at wording this but David still talks about a sense of reality and how difficult it is for him to understand things that he has not taken part in.

 

As I have said we have this to a lesser degree with Matthew right now. He wants you to stop the TV and freeze it - which of course you can not do if it's not on video. He wants you to stop your conversation until he comes back. I do agree it's a way of being able to predict and I also think it's the only way they feel included and can make sense of other lives that are being lived out around them.

 

If your son does know about school no matter how happy he appears to be, then maybe he feels that if he can 'stop the world' now he can do that while he is at school. Hope some of this make sense?

 

Carole

[LizC]

Hi Matthew is very similar although not as bad lol. If he goes out the room/toilet or even over to the table in the same room, he has to pause the TV, he can't stand it if isn't! he does get upset if anyone goes near the tv and he sees you have when he comes back and no one can have the remote control!

[Guest hallyscomet]

Hi Brook,

 

I read your posts a couple of times and agree with Zemanski where he says

 

I think you need advice from a specialist who knows your son and I think you need to address any underlying anxiety he has - the more you can stabilise his world for him in other ways the less dependent on this strategy he should become, but it may be difficult to unravel where the stress is and how to support him to reduce it. I would suggest that your son needs an alternative way(s) of dealing with his issues if he is to let go of this strategy.

This is ASD behaviour but taken to extremes it could probably develop into OCD and become all consuming.

 

 

I hope you get the support you deserve, it hasn't been easy for either of you, "UP UNTIL NOW" I always say.

 

Up until now things have been difficult, but I hope you get all your questions answered soon.

 

Regards

Hailey

<'>

[Paula]

I think i might have come across as though i was saying these things are easy to stop and solve brook and as we all know there not.

 

It took me absolutley ages to lesson my sons obsessions and routines years in fact.Accompanied with loads of screaming yelling and tears and that was just me !!!!!!!!!!1

 

Its blooeming hard its a nightmare and as quick as i thought id solved finally one little obsession another one took its place.

[Viper]

Brook, just an extra thing to think about. I know you had to stay in hospital with your other son a short while ago. Could this have compounded the problem? He may be feeling insecure not knowing when it may happen again.

 

Ben used to scream when a programme finished and made us rewind it to watch it again. It got to the point we dreaded anything ending, so I know some of how you feel. <'> <'>

 

Viper.

[clintess]

my son can also be like this especially whilst out everyone has to walk in a certain order a real nightmare so i know where you are coming from.the older he gets the harder its becoming regarding isssues such as these which if noone complies turns into a meltdown.

[curra]

My son began having similar behaviour as a toddler, wanting to "rewind" time when things didn't work the way he wanted them to. Every time someone told him, "it's too late for this or that", he would cry with real sorrow and demand that things happened again so he could have them differently. As he grew (now he's 12) this intensifies when things go wrong for whatever reason and although he doesn't cry anymore, he shows signs of anxiety and tells repeatedly me to "stop time". Lately he even says that he "demands" that I stop all the clocks at home. It has been a long process of patiently explaining to him that I cannot stop the Earth from spinning around the sun even if I wanted, and things like that - I'd also would like to turn back time sometimes but nobody can do that - trying to help him feel less anxiety with this reality. When he says, "Let's PRETEND that it's early (for example on a Sunday evening) I go along with him as it's just make believe, and that shows that he is accepting it more and maturing. My son's behaviour may be different from yours but I think that in both cases it has relation to anxiety. SChool demands can be a source of that anxiety.

 

Curra

[Brook]

WoW you lot! Thanks.

 

My son does have sensory issues, he comments alot on the horrible smell when we are outside and I cant smell anything! when we was in the bank once he shouted out 'that lady stinks', he held his nose, in actual fact he was talking about her perfume! He has also said that his nose hurts at certain smells.

He also doesn't like certain sounds, not all, but some he will immediately cover his ears (especially if his little brother is screaming) he will really get distressed. Sudden sounds send him hysterical too.

I'm not sure about visual, I know that sometimes he rolls his eyes around and looks out of the corner of them, but I'm not sure if this has anything to do with lights etc..

 

Carole, what you said about controlling school really jogged my memory. Thinking about it he did very similar things whilst there. One playtime he had fallen over and had gone to get an ice pack, whilst he was getting it the playtime had finished and all the kids were back in class, when he returned to find them in there he apparently went hysterical, he was screaming 'line up again', the TA said that nothing would calm him so they got all the kids out of class and lined up again! I said that although that was nice of them to go to the trouble of doing that, it actually would do him no favours, as in reality not everyone is as accommodating and he needs to learn how to cope with it for the 'real world'. I think there were many similar incidents like this, but because they could not calm him they would go along with it and it must have been just as difficult for them.

He also could never start from the muddle of things, they were rehearsing a play and something went wrong, he started to get very upset and wanted them to start the whole thing again, the TA said the play had been going for half an hour and they couldn't start again (which was quite right) but he then couldn't stand to participate anymore and never did take part in the play, I had to collect him early on the play day.

 

Paula, I did get the gist of your first post, it didn't come across how you thought it might have.

 

Curra, my sons anxiety levels shot through the roof whilst at school.

 

Thanks all for letting me know we are not alone.

 

Brook

[oracle]

Brook if Matthew is trying to tell me something that is important to him and someone either interjects or interrupts then he has to begin all over again. If he is stressed and feels that he has omitted something he has to start all over again. It's not quite the same as trying to stop everyone in their tracks and making them wait for him to return to the room - but it is a BIG issue with Matthew. Often he will go into a meltdown if he feels he has not told me in a way that is acceptable to me. Sometimes I go into meltdown

 

Life is so hard for our children and saying that they have to learn to adjust just does not help. OK so we know that they do but when they are still so young and we do not have the shared understanding that is needed to help a child adjust how can they adjust without feeling so confused and disorientated?

 

Only today I had to call our SEN dentist and cancel an appointment for David. His appointment was meant to be at 4.30pm today. David is fine with the Dentist and so was fine about going. However at 3pm on Friday afternoon I got a call telling me that due to circumstances beyond their control the appointment had been brought forward to 2pm today. By 3am this morning I had had enough. David was finding the change of plans so confusing that I rang and re-arranged for another day. They were OK but I still got the feeling the did not understand

 

Also we are decorating our bedroom - it's long overdue - and at bedtime last night Matthew who had been very quite all weekend, asked his Dad if he could only make one change in the room everyday as he was finding it so confusing and he thought that he could cope with one change each day I wanted to weep for him.

 

There we have one 18 year old and one 8 year old who are confused by even the slightest change so imagine walking out of a room with everyone in mid sentence and then coming back and finding that not only have they finished the sentence but that they are not even talking about the same thing anymore. How do you find the bits of information that you have clearly missed while you were out of the room

 

I am not saint and I blow quite often but my heart bleeds for our kids and the level of stress they they are all living with on a daily basis.

 

Carole

[Brook]

Hi Carole,

 

I wouldn't say so much that I want my son to 'adjust', but I need to find a way to help him 'cope' with these situations. I feel it eats away at him and causes him so much stress and I know that the outside world is not as accommodating and I wont be here forever.

 

My heart bleeds too, at the level of stress our kids live under each day, so I'm trying my hardest to make sense of it all and find a way to help, but I first need to get to the root of it all, which as you know isnt always that simple.

 

To say that he found the mainstream environment confusing is an understatement and to be honest he finds this whole b****y world confusing. It truly does break your heart.

 

Brook

[Kathryn]

Brook,

 

<'> <'>

 

I really hope your son gets the school place. From what you've described, it sounds exactly the kind of environment he needs.

 

K x

[oracle]

Hi Brook

 

I did not mean that you wanted him to adjust but that society more or less insists on it and from an age when it is clearly impossible for our children to make those adjustments.

 

Although David still has many problems he has managed to adjust by making sure he is in control of a situation. The Dentist proved this to me yesterday. He can cope if he knows what to expect. Now aged 18 he realises himself that in certain situations he either adjusts or stands out like a sore thumb. He hates standing out. I do not think that it will ever feel natural to him to make these adjustments so that he can fit in, but I suppose the important thing is that he 'can' adjust now and knows why he must do so.

 

Carole