New Member - Advice Required

sorry another thing is he probably has a sensory processing disorder which could be affecting his behaviour  there is a wesite that is usefull- just type in sensory processing disorder into google  you should pick up the link- it is worth reading to get a better understanding of why he gets so upset with being asked to use the toilet/ go out etc.  You will understand things from his perspective more and can then adapt what you do with him.

Hi gosh it sounds like you have really been through the mill| With the system I mean.  Its really unfortunate that you had adiagnosis the day before moving health authorities.

With the daily care routines eg washing,bathing going to the toilet etc Ive found using picture cards displayed in the bathroom/toilet really helpfull.  They show exactly what the child needs to do pictorially.  There are web sites listed on this site where you can print them out or easier still you can order ready made ones from ebay for acouple of pounds. 

They have worked wonders with my son who is the same age as yours- they help to reduce anxiety and outbursts.  He follows them and i let him get on with it himself (whilst being on call for help off course)  Lots of children on the spectrum have problems with toileting.   He enjoys playing with the cards also.  You could contact your local childrens centre also as some of them have thew software to produce the picture cards and may be able to do it for you.  Also ask the school for your son to see an educational psychologist if you think he may be struggling at his new school.  You dont need to wait for camhs for that side of things.

Charlied said:

 I have read the Explosive Child but have found it hard to apply. It suggests talking to your child after a tantrum to try and find out the cause but Tom is unable to articulate what has upset and will merely say he hates me telling him what to do or going to toilet. He uses the word hate a lot.

Don't you see he is articulating what has upset him! He 'hates' you telling him what to do, or going to the toilet! That is the problem!

And, regarding the word 'hate', for us, on the spectrum, emotions are often either fully on or fully off - there is no middle ground - so what he feels probably is most accurately described as 'hate', but then, when he's happy he will be 'blissful' and when he feels the love that he almost certainly feels for you, he will 'adore' you.

Hi, thanks for your comments.

Our biggest problem has been the health system. Because our old health authority was understaffed, I was given a phone diagnosis the day before we moved house. When we moved I went to our new GP and asked for help, he said he couldn't help because there wasn't a diagnosis in my son's notes. I went back to my sons old consultant who said she couldn't refer us straight to someone in our new area as she didn't know who to refer him to, she did send us a letter confirming his ASD disgnosis.

The school were very helpful and referred us to CAMH's, we went to see them but were told they couldn't help us as he didn't have a detailed diagnosis. I went back to our GP who agreed to refer us to a paeditrician. We saw the paeditrician last month who finally has all the notes regarding his diagnosis. She is referring us back to CAMH's. 8 months later it feels like we are still no closer to getting help.

Generally Tom is quite happy as long as he can have time on his own and do his own thing. It tends to be if there is something we want him to do that he doesn't consider is necessary, i.e. getting dressed, going to toilet, homework, haircuts, going to places I need to go to. He becomes very agressive towards me and shouts at me. He has a younger brother and directs a lot of anger towards him, he is always telling him to go away and he hates him.

Any instruction I give, such as tea is ready or bath time is met with 'Shush' or 'Never' 'Go away'. I have to just ignore it, if I try and address the way he talks to me it will turn into a violent tantrum.

 I have read the Explosive Child but have found it hard to apply. It suggests talking to your child after a tantrum to try and find out the cause but Tom is unable to articulate what has upset and will merely say he hates me telling him what to do or going to toilet. He uses the word hate a lot.

We just don't know how to cope with his behaviour. Are there any workshops in Kent we can go to that will help us understand? Are there any books or groups that can help? I am starting to think we will pay to see someone to get help, but again I don't know who.

Hi Charlied,

We have similar probs with our son who is six we are currently waiting for a referral from GP to CAMHS for some help.

Have you got a National Autistic Society Group in Kent, they are fantastic and usually offer newly diagnosed parents a workshop.

Only thing I can think of if it is do with his routines being upset is take him round the area making sure he knows where everything is, use visual cards (can give you more info about these if you are not sure what they are) to reinforce new routine.  Make sure he is happy with the way round his bedroom is, maybe put his name on his room door to reinforce it is his new room.

Also whenever I'm stuck just search on this website for information makes you realise your not alone.

www.autism.org.uk/.../challenging-behaviour-in-children-with-an-asd.aspx

Hope something here helps, if not hope your referral comes through quickly or the parent group get in touch :-)

Hi There- I am new to the forum.  It does sound a real struggle that you are having.  I would definately try and make contact even by phone with the support group leader that the paediatrician told you about, they can give a wealth of info to you about how to help your son with the anger he is experiencing, after all its about helping him and in the process helping yourself and siblings.  I wonder if he is struggl;ing witrh his diagnosis does he knows what it means for him? Its hard enough for otherr familly members to understand but it must be worse for those who actually have been given the diagnosis.  I dont know your circumstances but I would probably start at base 1 and talk about the diagnosis with him then move onto talking about the move in away in which he can understand and make sense of.  Then I would look at ways in which you can practicaly help him with routines etc eg. visual aids, social stories, power cards.  Its really about creating an atmosphere in which he feels safe and can talk with you.  There is so much you can do but without knowing your circumstances its difficult.  He may also be struggling if the move involved a school change and then there is the impending secondary school application and puberty to think about.  Basically any or all of these things may be impacting on him.  I hope ive said something useful but if you want any more ideas let me know!  Good luck 

th emove obviously upset him a lot, his routines, everythiing he knows and relys on has been changed, so its quite normal that leads to stress and it might not calm down just because you have been there around 8 months ,those same things might be stressing him even now

so its basically about trying to find out just exactly what it is thats stressing him and causing his frustration, personally i do think the move is still affecting him, but i could be wrong its just another possiblity for you to look into 

hi there  charlied, i dont know what to say to be honest,im a bit overwhelmed myself here by all the people who are being left to cope with all this alone while the government and all related do nothing to help

what did your new health authority say? ( im gonna assume they dont know much about autism and thats part of the problem)

all i can say is the same thing i just said a wee min ago in another post, try to figure out what causes his tantrums because it might not just be his behaviour towards say a rule you put down that he doesnt like, there might be something else, a sound/feeling etcetc that he might associate with that rule or even area in the house you are speaking to him

when my partner is in the midst of an 'autistic rage' the best thing for me is to get out of his road and let him deal with it, so i think it might be the same, as nothing i do seems to make a difference and only seems to add to his frustration/anger, even when he seems calm right after, its not always the case

and when he is calm you sit down with him and try to explain what this rule is why it needs to be followed etc, and find some way to make it positive for him, ie give him something else in replace of that, say if he follows that rule it leaves more time/money for something else, say him getting that new game he wants or whatever

which i think might be more likely to allow him to consider it as he gains something from it in the end