question on behaviour

[allsetuk]

i would really appreciate any help or advice on coping strategy with a 4.5 year old severe aspergers boy, i am a single parent and i am totally dedicated but i am finding him increasingly difficult, i love my son and have isolated myself from everyone in order to just make it through the weeks . he was banned from friends houses many years ago because he is so busy and full on.he has just displayed odd behaviour since he could crawl i always knew but thought it was my normality and i have remained as upbeat as possible.......He was just diagnoses 2 weeks ago after 2 years of video assessments, reporting , diary keeping , note taking with sever aspergers, add and sleep disorder. I have had this huge news told to me and given a reading list !!!! and left to get on with it ...im not sure where to go from here.

 

I cannot raise my voice without him saying do not speak to me like that over any kind of matter, he argues and disagrees with everything and has a literal response to absolutly everything..... i cannot seem to get through to him that he doesnt need to do everything from morning to night one inch away from my face, or on my knee, he follows me everywhere.......he is totally over aggressive having to bear hug me all the time , punches , kicks and generally leaps on me all the time, sometimes for fun. And just doesnt seem to respond to mummy being upset, he is very bright and clever and has a good command of language way beyond his years yet seems to have no empathy with how much he is hurting me.Ive tried explaining repeatedly , and ignoring or walking off he just follows , ive tried naughty steps, we have star charts ...does anyone have any suggestions on how to connect with him - or has anyone tried social stories ?

 

thanks

xx

[dooday24]

sorry have no words of wisdom but that sounds just like my son whos just been diagnosed with autism, reece is very full on jumping on me he dosnt hug me he strangles me also kicks,hits bites scratches i just keep saying the same thing over and over to him and usually he calms down but can take hrs and a few war wounds on me. i wish i had the answers 4 u goodluck and hope u get some help lv doonnaxx <'> <'>

[allsetuk]

thanks ...althought right now i am not even sure where to go for help or what i am meant to get ...i was given a reading list and told that was it !!

contacted a local group they said they were not even running as not enough members

[JsMum]

From what you have posted it sounds like you have had a very long road to have an actual reason to why your son responds the way he does and that in itself is going to be very overwhelming and though reliefe to now have understanding to what he has which is number of complex conditions you have come along way so priase and admiration to you, and if I had of had as many answers as you when J was four and half I might of done it so differently.

 

he was seven before he was given any definate diagnosis, and we are still going throw the system to get a proper investigation for further suspected disorders.

 

I have read many books on parenting and many just simply dont work with a child with complex needs you may find spersific books much more helpful I have actually just today in a book store came across a book called How to help your autistic spectrum child, by jackie brealy and beverly davies.

 

I have routine planners on the wall, a monthly planner of dates too, like the dentist, dyslexia, care worker, swimming, ect,,,

 

visual displays of evening and morning routines, which can be done with a digital camera taking key tasks of your child and then laminating it onto a chart.

 

having a bath, brushing teeth, dressing into pjs, having a story at bedtime, ect...

 

effective anger statagies have been very useful in our home to reduce the frustration, he has punch pads, and gloves, followed by a release, then calming down with breathing excerises, then a cd of piano music.

 

ensuring that school are following effective calming methods in the days programme, with again supportive measures to enable him to feel calm at school so a meeting with your senco to go throw the diagnosis and an IEP set up to meet his Educational Needs.

 

I have employed a private health care to support my son in the evenings and this has prooved very invaluable and the most supportive, it may be that you could look into possible support at home.

 

there is lots we can do but we can only do it one day at a time to ensure that the changes to unsettle them further, so its about taking tiny steps for the next few days and increasing your awareness of AS and the comlexities of your own child, because what might work with one child may not work with your child.

 

The most effective book that I have read and understands is the Out of Syncs child and this explains why that is so, its to do with the HYPER and HYPO sensitivities of your child.

 

National Autistic Society may be able to offer further support and offer more local services with resources and referals to further support services.

 

It could be there is a AS support group in the next town that could offer you telephone and home visits.

 

JsMum

[krystaltps]

Hi, I can't really offer much advice.... I can only empathise, as we've been there too. It helps to know you're not the only one. <'>

C is 8 now, but when he was 4 he was pretty much as you describe your DS. He was my shadow (and often still is, depending on his level of stress). He loved and hated in almost the same way - violent hugs, while hitting you . He didn't recognise distress in anyone, and all the good-parenting techniques (a la supernanny and her like) did not apply to him.

He was 7 when he was dx, so you have a good start in the fact that your DS has received a dx reasonably early on life.

Star charts, and other reward and sanction systems are useful, but you may find that you need to rotate them, constantly adapting them. We need to change C's about every two months - as he gets complacent about them.

The good news is - it does get better. You're doing the right thing in devoting so much time and patience to him, it all helps. I have to admit that C has learned a lot of appropriate responses from mimicking his younger twin siblings, i.e. mum's upset and they have asked what's wrong and she smiled and hugged them - I'll try that next time. Your DS may pick some of that up when he goes to school/nursery, if he doesn't have siblings he can copy. C has gotten so good at it, that he asks me if I'm okay every 10 minutes .

Stick with the forum, it's the best place to be. We're all here to support each other, and listen to the highs and lows of life with an ASD child. I would be lost without it, and all the members.

<'> to you and your boy.

Edited February 11, 2007 by krystaltps

[reuby2]

I know exactly how you are feeling although luckily I have my husband to help (although he doesn't cope well with it at all). My son is now 8 and still leaps at us, jumps all over us, tries to cover our faces or mouth/nose/ , he will not let me out of his sight (i feel like a bit of a prisoner really, when he is at school that's my time) he will hit out when upset or kick/hit/grap/pinch etc etc. He constantly tells us we can't do things e.g go out etc. he thinks he is the boss and when we grit our teeth and drag him out he is then okay but we are already frazzled. He shouts at us, screams at us, doesn't respond when we are telling him we don't like him covering our faces, or him standing in our faces. He calls my husband an idiot (which really upsets hubby) and when i need to go out (to the doctors or something) he screams "i'm not staying with that idiot (hubby) , he screams over and over again. The other side of it is the reasons for SOME of his behaviour. He is obssessed with me dying, he thinks if he does certain things (even if it is buying a toy he wants) I will die, so he stops himself doing things because he is so frightened of me not being here.

If I aren't there, he can't cope. Although saying that he is very happy at school now and doesn't get frightened about me when he is there. If he sees things on the t.v or reads a story about people having no parents or no mum, he is so upset and needs to watch T.V to "make him forget".

It does get me down (having no freedom even to do small things alone) but my Hubby is finding it more difficult, he is currently really down because my son is so aggressive towards him. But he forgets that sometimes my son is so sweet, drawing him pictures etc.

When your son starts full time school (if he isn't already doing full time) you will have a little bit of time to yourself but concerning the behaviour you are in the same situation as me really, time outs etc have never worked for us. I have been reading about making up a schedule for each day and as yet haven't done it.

I think I may start one and then see how it goes. I really hope things get a bit easier for you <'> <'>

[allsetuk]

hi everyone and thanks so much for the reply , its so great to hear other perspectives, I am a single parent with VERY little in the way of support or help. I am amazed at the response i have seen in my best friend and family who all seem to think somehow that not having a dad around in my sons life has caused this or that i am somehow not hard enough on him or I have not been consistant enough.

 

There are many things i read here that i associate with,I have done charts since he was 2 and i have had to reorganise , change them after a couple of months as they stop having an affect. I need to get hold of a big visual chart i think by the sounds ...my goodness JSmum u sound really really organised

 

My son too is obsessed with me dying and always asks and has done for about a year, where would he go if something happened to me....he seems emotionless though in some respects and is more bothered about the literal "who would drive me to where i am going to live if you are not here anymore??" He asks me these questions alot, especially in bed when we are reading ....he acts as if he is totally obsessed with me but not anyone else.He is my shadow day and night . He cannot sleep alone he requires bear hugging all the time to feel safe, he is scared of dark so much.

 

I feel there is a lot of complex technical jargon and medical information that if i wasnt clued up (by reading websites and talking to people ) and I see you all talk in code on here . DX, DS,IEP, SENCO etc ... i dont know what half these mean but ill fathom it out.

 

My son has done very well at disguising his behaviour in certain situation ,i think becuase he is very verbal he can deflect and be devious to cope with things he cant get his head around and this could easily be overlooked if you didnt live with him.

 

Luckily goes to a good school full time where he is in a small class of 15 with strict rules and he has flourished here after the first term of drama and whilst has been a challenge to teach he seems to have connected well with his teacher who was his nursery teacher too, she moved up with him into Reception Class so he has been there since 3.5. She even came with me to the case assessment and took an afternoon off school to support me. The hospital said i had done an amazing job with him and make it look very easy but they are fully aware that it is not easy...... just my "normality" because i have always been on my own with him.

 

I have very little in the way of family but what i do have is some elderly grandparents who have always insisted my son is just naughty and a show off (when he spends half or more of the visit hiding behind the table/sofa or chair because they have told him he is an idiot !) and that i am not hard enough on him........which in the past i have been but i soon realised the naughty step did nothing but affect his self esteem , also if i touch him ..ie. to move him away from me , he gets very violent and this make things ten times worse and the friends i have told have had an odd reaction and i wondered if anyone else had experienced this? ........people seem almost getting cross that somehow my son has been pigeon holed as a high functioning autistic at a young age and that labelling children is totally wrong. My best freind who is a teacher says that there is nothing wrong with him from what she can see, and does not recognise it at all saying autism should not be diagnosed until they are 8 ...this is what she wrote to me "like are we supposed to think hans aspergers is a genious for suggesting that we bolt shelves to the wall and put cupboard locks in our houses?Well My kids also climb the sofa as do all other kids who come to my house, including those who are older than Your son. They all hate scratchy labels, tight head holes, itchy patterns on the inside of t-shirts, love routine, need bribery to get their hair cut, etc. etc. As for boys whacking each other, this is what they have been created to do, fight for a princess, fight for their country, defend their livlihood, they're BOYS."

 

..........i feel totally bemused and confused by her reaction

I thought surely isnt it better to help him now with social stories and understanding.

 

im feeling fragile after all this external negativity..

[Suze]

<'> ..............GOSH,..........I can only think that in a rather odd round about way your friend is trying to support you.However her comments are doing the exact opposite and I feel very angry and upset for you.As `anyone on this site will tell you, a diagnosis of autism/aspergers isn,t easily acquired, very often it involves years of fighting and appointments with different specialists.No one labels a child for fun, but so that they can be more easily understood and have access to appropriate provision.I would contact your local NAS group and enquire about doing their Help course.You sound a little bowled over by the diagnosis so give yourself time, you may find as time moves on that those people who cannot recognise your sons difficulties or diagnosis , become less important to you .I had friends who I no longer see , their lack of understanding made it impossible to have them around my son.Good luck Suzex.

[allsetuk]

really enjoying having somewhere to check into everyday ...and see what you are all going through as well....i am bowled over...more with where the hell do i go from here and coping in general , things seem to be getting harder and im getting more isolated ...i cant understand why being in my house is becoming such a horrible experience for my son, its like he is totally manic,attacking me all the time all day long unless i spend every waking second attached to him ....its like extreme boredom ..but ive not a clue how to occupy him as he cant sit still to do anything i give him to , thats fun like arts and crafts .. took him to the deep aquarium today, he went round it in 8minutes flat ...but still managed to tell me everything he had seen ...

madness !!!

[zaman]

I feel there is a lot of complex technical jargon and medical information that if i wasnt clued up (by reading websites and talking to people ) and I see you all talk in code on here . DX, DS,IEP, SENCO etc ... i dont know what half these mean but ill fathom it out.

 

If you don't understand the jargon, all you have to do is shout. There is a thread at the top of the page called jargon buster that may help. My off the top of my head:

 

DX: diagnosis

IEP: Individual Education Plan (it is something that gets drawn up for kids as their eduction targets each term, I think!)

 

SENCO: Special Education Needs Coordinator (at school)

 

Have you got a follow up appointment at the place where he was diagnosed? If not, then perhaps you need to get one to talk about next steps.

Edited February 11, 2007 by zaman

[krystaltps]

The forum becomes alomost obsessive doesn't it? .

I'm sorry you're not getting much support, unfortunately that goes with this dx. I am very lucky in that my family (my parents and my sister) are 100% behind me, and realise and accept C's dx (it's also shed a bit of light on why my father is the way he is - if you go with the hereditary theory). We see very little of my hubby's family, as they simply do not "get it". They visited at Xmas, and Granpa took a photo of C (he knows he hates it)- well, all hell broke loose, we all recieved rather viscious verbal, and he spent the rest of their visit in his bedroom, periodically self-harming.

As for friends? What are they? We don't really have any anymore, just work colleagues.

My favourite quote, read it on the forum a few days after I joined and it has stuck with me as my motto:

Those that matter don't mind, and those that mind don't matter.

[allsetuk]

thanks so much for all your input - i found the jargon buster ..sorry i didnt spot it - im so tired that i am in fairy land most of the time ..had my son off school sick for past week and half and now its half term so its a bit full on.

my freind in the US her daughter has just completed therapy degree she made this suggestion for encouraging good behaviour

an incentive plan.

Beth says autistic children do well with this,

When he does something well he gets something in his hand or jar, like a poker chip, you'd have to always carry them with you though, and if he does not do well a chip is taken away. then after a specific time the chips get turned in for something he wants. she explained it as they need immediate gratification.

 

the only thing about this that bothers me is the taking away i know with my son , pointing out his failings have a terrible effect on him, make things worse

[JsMum]

I have sent you a pm so do check your new messages, on the right at the top of the page.

 

JsMum

[phoebe]

WOAH......................just read all of this , dont know how I missed it before.

 

Welcome to the forum, you will find it a useful resource as well as a way of keeping a bit sane!!

 

So many of the things in your post are familiar to me and to many of us . Reading it makes me want to .

 

It will get better. You have done so well so far by doing what you instinctively knew was the right thing to do. I am worried about your apparent isolation and the ever decreasing spiral that comes after diagnosis. It is so important to find people you can talk to. Glad you found the forum. Also, though, do try the HELP course and do try to find a support group locally.

 

Behaviour management is such a difficult issue. I can well remember trying /trialling allsorts of different BM techniques, both at home and at school. Before diagnosis and even periodically afterwards, you still hold in your head the traditional view of he is a child and he just SHOULD do whatever without question. The reality for our children is that they do not hold any preconceptions about the hierarchy of society or know any of the rules of social etiquette. Also, you do have to evolve the system that you decide on regularly to keep it fresh.

 

Visual timetables and charts will definitely help, but the key is to find something that is important to your child. Something that is his "key". Is there anything that he is obsessed with? With DS, it is his screen time (any gaming media). It could be television time though, anything that is impoortant to him. You say that he is bright, with a good vocab, this helps. As someone else said, you need to make small changes. When our son was the same age as yours is now, we had all the same problems as you describe. We made charts for everything and had a reward system, between home and school that we linked into his screen time. Also, we stopped all squash and fizzies. (this began as a punishment and made such a difference during the week that I have never been inclined to go back to allowing them). We were recommended to follow a system called 123magic (from a book of that name) which is behaviour management technique for not only stopping the behaviour that you dont want to see, but for encouraging behaviour that you do want to see.

 

He is 8 1/2 now and we are just going through the statementing process at school, but we have learned so much about him. I really got to the stage where I was totally exhausted by it all and I did not feel at all close to him. He was just a huge millstone. I was being judged by everyone as a bad parent. It gets you down. Diagnose and dump is so difficult, but in the end, you are the only person who will learn to know your son the best and along the way on this journey there are so many good things that will happen.

 

With each of our children, I believe there is a "list" of things that we would like to change. It has some things on it that are more of a priority than others. Keep chipping away and one day you will realise that you are working on the things that were much less a priority a few months ago.

 

My son will now get himself washed and dressed for school (previously a huge problem) and will put away his bookbag and clear out his packed lunch bag after school. If I want him to do something, anything, I need to give him a reason to do it. This reason is usually a consequence of something that will happen to him if he doesn't do it. He is limitted to 1 hours screentime per day. If he gets a full house at school, he gets an extra 20 minutes, but 1 hour 20 is the maximum. If he is doing something that we want to stop, we count that's 1, thats 2....if he gets to 3 he loses 10 minutes screen time. Either from that day or the next days. Similarly, he will refuse to do stuff if it is not on his agenda and we will count him to get him to do it. He doesn't like it much, but we utilise his "key" to control his behaviour. WE had tried explaining why we want him to do something or why he needed to stop doing something, but for the most part our reasons arent important enough to him to make any difference.

 

At the same time, we try to help him to organise himself and to try to prioritise by using the charts and we try to teach him about the world and social situations by using social stories. It is just a case of keeping chipping away. Always there are new and different challenges cropping up and sometimes, something that he has previously done before he totally takes against for no apparent reason. We try to show him understanding and patience and most of all love.

 

TAKE CARE OF YOU.

Phoebe

Edited February 12, 2007 by phoebe

[Mother in Need]

I definitely wouldn't EVER take away a reward after it was given. Madness for any child, and with an autistic one can only lead to confusion, frustration, anger and aggression.

I used to make those 'chips' on the computer, with the help of my two youngest who chose the pictures etc, then printed them out and cut them. They fit into my purse so I had them on me always, and when they had so many they could exchange them from items out of a small toy box I had made up. This worked for a while, till, as mentioned before, it was time to change things around again.

 

I know how you're feeling, I am often so tired as well, I am also on my own with three boys with no family at all and very few friends, and NO-ONE who is able and/or willing to have my AS son for even a short time.

 

Try to take care of yourself (I know, a lot easier said than done), just think that if you're too exhausted to cope then that would affect your son, and make his behaviour even worse which then turns into a vicious circle (if it doesn't feel like that already that is).

 

Does he like to go out and be active, like going for walks or do sporty things? We discovered geocaching about a year ago, and it has made a huge difference to our lifes, it has taken us out of the prison that was our home as he was now willing to go out, and gave us something to do! We've even managed to go camping (first holiday for years and years) because of a geocaching event. (PS geocaching is like a treasure hunt, where you go look for a container with goodies using a GPS; there's a lot more to it, but this in short). I always have the problem of how to keep him occupied, I only need to go to the loo and he is bored again...someone has to be doing things with him to keep him motivated all the time.

[cmuir]

Hi

 

I can totally relate to what you're saying. My son is 5 and has AS. He's been described as being mild on the spectrum - but there's nothing mild about his behaviour. He's very aggressive, lashes out, trashes things, very abusive, etc.

 

The ONLY thing that I've found so far is to ignore him. This was something that my mum slated me for (she initially said I was being too soft, etc), but even she's came around to my method! Basically when Robert kicks off, I give him one warning. If he shouts at me or hits me, etc, I advise him that I won't speak to him until he calms down. He hates this. I genuinely find that he comes out of it (most of the time) much quicker than if I were to threaten to withdraw toys, treats, etc (which makes him much worse!). I know this may sound soft, but it works for us. There are of course times when Robert is too far gone to be able to stop himself from going into full blown meltdown mode and that's difficult. In addition, there are things which can't be ignored (actions which are harmful to himself or others).

 

I tried reward charts but found them a hit or a miss. One thing that I did find was never to use a chart which takes something away. To illustrate, if Robert behaves he can earn a maximum of 3 tokens per day. By the end of the week, if he's earnt X amount he gets to choose a toy from his favourite toy shop. I found it important to not expect him to be angelic throughout the day, hence 21 tokens by the end of the week was too much to expect. Something like 18 tokens is more realistic for Robert. If he fails to earn the quota, then it's not that he doesn't get his toy, it's just that it takes a little bit longer.

 

Another amazing thing that I found was Tickit sand timers. Robert is obsessed by time and asks "which minutes". In addition, when he was at nursery, he had to time time out and sit on a chair. During which time he had to watch a sand timer - although he couldn't actually understand/comprehend time, he could at least see time passing. These sand timers have been fantastic. They're shatterproof too, so I know on the odd occasion when I've had them thrown at me, they've still been in one piece!!!

 

Another thing that has had a fair bit of success for us it a type of visual social story. We found that the trouble tended to start just before we were going out/before we'd reached our destination. Even when it came to Robert getting a booster injection, I was amazed how well he did. This was only down to the fact that I'd illustrated (little stick men, etc) what we were going to do, when, where, etc. A lot of ASD kids/adults have difficulty processing verbal information (even if you think they understand). That's why visual information is often something that makes a massive difference.

 

It's so difficult. I really hope things settle down soon. Take care.

 

Caroline.

Edited February 12, 2007 by cmuir

[allsetuk]

again thank you for your feedback i am really grateful , i know i am not alone, even if it is just through cyber space i can connect with others at the moment ...Cmuir. interesting what you say about ignoring - i have found that threatening to withdraw things seem to mean nothing ...or make things much worse....he thinks nothing of wacking me if i say something in a tone he thinks is not Kind at all times and despite repeatedly telling him its not right like for past 2 years he isnt getting it........yet he seems aware that out of the home he cannot do this, until he gets with the boys from school who are all totally into rough play ..... he actually likes watching programmes like nanny 911 etc ..and really enjoys saying how bad the children are and when they are doing things right or wrong , yet cant apply to himself......ive tried many charts happy or sad over the years but after about 4-6 weeks they dont mean much ..to him so they have to be readapted ..has tons of energy and if i leave the room he follows, if i sit at the computer he sits on me , if i sit on chair he sits on me , everything from going to the bathroom to sleeping he has to be tucked up close , he is so dependant ....and gets mad if i try to get a bit of personal space ...he begs for "huggies " CONSTANTLY and i love him but my goodness do i feel smothered ...

 

The only time i ever see him happy is when we are away from england , everything seems to interest him more..the scenery in italy ,rome especially , he LOVES it .....the language the noise seems to really interest him, he repeats and mimics languages and loves the smiles and interaction from people as opposed to the frowns and growls in UK ....

Best wishes to you all

D

[Mother in Need]

The only thing that jumps to mind is maybe use a tape of italian (language/life, whatever) as a background noise to help keep him calm at times? people in warmer countries are so much more open and warm, aren't they, there is a marked difference.

 

The not-applying is pretty normal I think, my son is 13 and still has serious trouble with that, he knows it in his head, but applying it all is a different thing altogether!

 

You must be so desperate for some space!!!

 

Or maybe a video/documentary on Italy, would he sit and watch that and give you a few minutes peace?

[allsetuk]

good thinking maybe i could try it , he isnt really interested in tv though ....and sitting still is a no no ...he definatly has obsessions and i think im the latest lol!! along with the running order of the backyardigans of course - its not just italy , he has known (as in recognised )the difference and attempted to speak french and spanish since he could talk ..

[taggie]

Hi,

It's really hard sometimes isn't it?

The most useful thing Iv'e learnt over the years, is no matter whats going on to try and remain calm. This

isn't always easy but if I lose it in anyway, my sons behavior deteriates even further and it takes twice as long to sort the situation out.

I found life much easier once I'd accepted that I was going to have to throw the normal parenting rulebook out of the window and interact with and judge this child in an entirely differant way.It really does help to find out as much as you can about ASD's. Learning what works for your particular child though is often a matter of trial and error.

 

In our case motivators work well , i.e you do this, or stop doing that and I'll give you this (something that he really likes). Although there are certain areas e.g eating, where no matter what we do or say he won't budge and Iv'e given up trying.

 

We found visual timetables useful when he was younger, he liked the structure they brought to activities.

We try to keep to a stable routine for him, and prepare him well ahead for changes. He has become slightly more flexible as he's gotten older.

 

It's been five years since our son was diagnosed and although it's still a bumpy journey in many respects, it has gotten easier. It can seem very scary and isolating, more so if family and freinds aren't understanding or tolerant but as time has passed Ive learnt to see that as their problem and not ours.

Good Luck,

Taggie xx

[dooday24]

been thinking of u hope u r feeling abit better its so nice to chat to people who r going through the same things dont know wat id do without the forum and all the gr8 people here keep yr chin up yr doing gr8 lv donnax

[lynyona]

I found with kieran that remaining calm worked better as me not being calm led to confrontation ,yes ive yelled and screamed and felt out of control for doing so ,as it still does with dh as he doesnt know when to say nothing and the argument could go on for weeks.Also nothing i could ever do works with kier like taking his games console away,no tv etc and he had rewards and star charts etc he conformed to them when he was little but hes outgrown them now at 20 and we havent found anything else that works in the same way.Every days a challenge and we play it by ear day by day doing the best we can

 

 

lynn

[allsetuk]

i think ive had this forum on from 7am till 11pm the last few days every day as i try to get my head around everything i have to get on with ...all this and im trying to finish my degree thats going out the window LOL

[krystaltps]

I definitely wouldn't EVER take away a reward after it was given. Madness for any child, and with an autistic one can only lead to confusion, frustration, anger and aggression.

 

 

Couldn't agree more, it can be very damaging. I teach at a mainstream school where the children are rewarded with house points - the rule of thumb is never remove a point for whatever reason. The theory is that if you only reward the good, desirable, positive behaviours then you will gradually start to see more of these and less of the undesirable ones. (Blah, blah, blah )

The system we are currently using (and have been for the past 4 months, as it is so successful) is the assumption system: each child starts off the day with the assumption that they will have a pound at the end of the day. If the child is doing something not acceptable, or in contradiction of pre-agreed rules, then there is a 5/10p sanction (depending on the severity of the incident and the consequences). At the end of the day the child is given whatever money is left. This isn't a sanction system, as such, as the child does not have the money when it is removed, and the message is that "I believe you can earn this pound and I'm going to assume this morning that you can do it". I like to give C the opportunity to recover money that he has lost earlier in the day, if he can show me that he is really making the effort (therefore all is not lost). The biggest rule here, is that the child should never be left with nothing. The next big rule is that you ask them to stop the behaviour, then warn them that a sanction is going to take place, then carry out the sanction if they don't stop.

Children with AS find accumulative systems very confusing, that's why I like to give C the chance to make up for earlier misdemeanors. I did find that the first few times I "sanctioned" him he reacted very negatively, but I stuck with it and reinforced the fact that he could earn it back. He now saves up his coins for a week to a month depending on what he wants to buy.

It works very well for C as he is so material, he loves money and he loves internet shopping.

It may be a little bit sophisticated for a younger child, but it could be adapted - maybe sweets instead of money, target the current obsession. It works for C because his obsession is pokemon, and he loves trawling through ebay for pokemon games, books, figures, etc.

Hope this is of some help.....

[allsetuk]

i wonder if i could work his obsession with me into this lol!!

does anyone know is there a list of all that you should/could apply for to help you out benefits wise..a definative list for a single parent, ive read somewhere about the disabled tax credit premium but that its being phased out. gosh it all seems so scary right now , not have i only got DS to contend with (see I used some jargon !!!) but all the DLA stuff to deal with too...i can see why people are put off doing it the form is hideous...

[Kathryn]

Hi allsetuk,

 

Try the directgov site for starters, you'll find a lot of useful information there.

 

Here's a link to the section on benefits for carers which might give you some idea of what you can apply for.

 

http://www.direct.gov.uk/en/CaringForSomeo...ers/DG_10037637

 

Good luck with the DLA form, it is horrendous but well worth the effort if you're successful.

 

K x

[allsetuk]

got a magnetic reward chart from early learning today 6 pound ..not bad !! and you can write on it what goals you want to achieve ..

[allsetuk]

ok i am going to scream ....i am so on edge i dont know wether to laugh or cry, im really struggling to cope - i kinda of feel like doing both laughing and crying ... having such a bad day in fact bad fortnight...DD wont leave me alone, not for a second ...hes being doing this all week and last week and its getting worse, i cant sit on a chair without him sitting on me, or behind me or wrapped round me in some way, he has to be physically attached or touching me all the time, if he sits behind me he hugs my neck , so hard i cant breath ...then he realises after i say please stop ....and he is like oh sorry , then literally 5 seconds later drifts back into his own world and does it over and over and over and over and over .....i must be saying like 200 times , please can you not do this ...or please dont - he is constantly trying to put his feet or hands up my jumper as crazy as this sounds ...he wants to sit and watch tv ..well not sit..... fidgit for five seconds ...if i walk out the room , he comes, he wants to sit on the cooker if i am cooking !!!!! he wants to do everything one inch away .....i cant escape and im getting totaly overwhelmed ...i cant get any activity up and running as everything i suggest he says he isnt good enough to do it , so can i do it for him .......

[JsMum]

J has seperation anxiety and it sounds very similair to what J was like when he was younger, around 4yrs, he has got much better but he still panics if he doesnt know where I am at all times in the house, its the anxieties that highten when they dont have that connection, its really draining and I have had real difficulties with J especially at nighttimes where his anxieties highten and want to be in the same bed, however he is in his own room now and its very exhausting to have to keep to a tight scedule with ensuring he feels as relaxed and calm as possible with me reasurring him and resettling him as much as possible, I do the 5 min rule, in five mins I will come and check you are ok, and then leave him again, it works now but take real committment but over time the time extends until he is achieving 15 mins where he is in his own bed on his own with me checking him every 15 mins.

 

I recommend some seperation anxiety reading and trying some of the behaviour techneques, which is gradual and slow processing of wheening him of your reliance.

 

school use to go bazerk when he was younger saying I was mothercuddling him at reception time but he would become so glued to me that he was impossible to let go off and I had a real hard time trying to get others to understand why he was so attatched, its going to take patience and lots of rewards for the times he is playing on his own, or sitting in his own big boy chair, sleeping in his big boy bed and eating his meals with mum in his own chair, as time goes by and he gets older he will see the pleasure and praises that he will want to do as much as he can to please you and increase his own independant skills but its the smallest tasks first that need addressing first.

 

please do check out seperation anxiety.

 

 

JsMum

[allsetuk]

my god i dont wether to laugh or cry , right now im crying ...i know ive spoken to you all before about lack of support and the email that came from my best freind whose a teacher and has always been a massive support until i told her about my sons diagnosis and she said children his age (nearly 5 ) shouldnt be pigeon holed and it was disgusting that he had been

 

but i cant find where i posted it ...and im in a tizzy ......becuase i was so upset by her reaction , well now i have another one and im just devestated , i tried to explain to her that my sons diagnosis could be a benfit and help me to help him and that i was a bit hurt by her reaction but all its done is open up the email for more of the same ....in this kind of tone ........i just cant beleive it

 

She said she is totally against my son having a label all along, for a load of reasons but mainly because it doesn't help .!!!! She said she is very angry that i have been told that he has severe aspergers with ADD, Studying children's behaviour, Early Years Education and SEN is 'her thing', and she has reflect and analyse and it makes me look forward to going back to work, She said she read all your emails and attachments with growing passion about the whole issue, even if it's in disagreement! Outside intervention is notoriously difficult to get in a mainstream school, unless the problem really is severe (like a violent child), which is why we would just look at the individual child during the infants. She said There's a risk now that My son will pick up on his title now if you and others talk about it in front of him, like saying he won't do this or that (stand still, stand behind the white line etc.) cos he'll get the message that you don't actually expect him to do it. I am really hurt by this because i woudnt just let him get away with naughty behaviour and say its cool because he is autistic !! But i would like to explain to his teacher why he is saying he has tummy aches everytime he has games becuase he is scared of getting dressed and undressed!!!!!!! or wants to fly round a aquarium at 30 mph becuase the people scare him ...???

 

Here is the rest of the email She said she used to take "children on school trips, pond dipping and walking in woods, no matter if you have Down's, Aspergers or are just plain naughty, if the behaviour is socially unacceptable or dangerous, the rules are the same for everyone, you can't just say 'it's ok he's autistic'. Nor can you say that time outs/naughty mats etc don't work cos there is a method that works for every child, you just have to be consistent once you find it, consistency is even more important with SEN children, but all kids need clear boundaries. The danger is that parents have a diminished sense of responsibility (especially for social behaviour) once their child has been 'diagnosed'. I'm uncomfortable with the term 'high functioning' as well, it seems like a psycho term for 'has a disorder but isn't thick' or does it mean that he is gifted? Again I'm being blunt and to the point, but in the past I have suggested various things in a bit of a wet, softly-softly way and you haven't taken it on board, that is your perrogative of course. I am trying to be helpful but it may not sound it.Please, please remember that however severe his aspergers is, he is still only little, the stuff about him being devious in making people think he isn't worried - it's proper scary that you would think a 5 year old is capable of this. However intelligent, and I know he is bright, 5 year olds don't have the emotional maturity to think in this complex manner. (this is because i said he has been doing lots of things at school to get out of the things that frighten him like getting dressed/washing hands etc ..he has been hiding ..he does this kind of thing all the time at home and has done for a year ..yet she is telling me he isnt emotionally capapbel ??????) Also most of the stuff you've been telling me suggests that aspergers have difficulty with emotional development and reading emotions in others, but any 5 year old struggles to express anything other than in your face type emotions, nevermind decieve adults about what they think the adult wants them to feel!! Little kids come out with all sorts of weird stuff about random things all the time.

 

 

i must sound like a right worry wart here i know but this is my best bud on the planet and i have very little family and im just blown away by her reaction.....

;(

[bikergal]

If she's your friend she certainly isn't supporting you. Sending you some <'> <'> <'>

[allsetuk]

Thank you for that ....i feel like im being supersenstive or something..as ive already tried to explain to her that as a single parent i feel very vunerable and alone all of the time ......and normally i can talk to her about stuff becuase weve been best freinds since 4 years old and we have never had a cross word about anything ...we dont live near each other but shes like family.....i cant get through to her that i am not asking her wether its right or wrong and i am very much aware what to do and what not to do he is my son ...I live with it!! all the time ........ i tried to explain to her that her manner was very unsettling as constantly telling me all children do the same thing and my son shouldnt have been diagnosed at his age isnt helping ...i cant understand why she has such a bee in her bonnet ..... and to say that he isnt capable of inventing things at school becuase he is frightened of getting undressed or hiding because he doesnt want to wash his hands....he has been capable of forming coping strategies for a long time, im sure all of us see that in our Aspie children ...dont we??? surely 2 years of professional probing and prodding at the hospital ..they wouldnt just diagnose for the sake of it ???

[curra]

<'> Hi Allsetuk, <'>

 

I know where you're coming from as I too have a best friend who doesn't live near me but is like family to me. We've been friends since we were both 18! (and that was LONG ago ) She's a psychotherapist and when my ds was diagnosed, like your friend she was not happy at all. She insisted for a long time that in her opinion my son was not ASD and that he needed only a therapy to sort out his emotional problems caused by my being a lone parent and his dad not around. It came to a point when I felt that she was almost telling me that I was inventing my son's dx for some obscure reason in my mind and I was no longer being helped by her, she was cross with me and I with her. Until finally I wrote a long email to her explaining to her what my real situation is, my difficulties as a carer and most of all, saying to her that I do not need her as an expert but as a friend, ie the same old person who understood and supported me over the years. There are enough experts where I live to dx and say what my ds needs, but I have no support from friends or family with whom I can talk, moan and relax. I told her that I need her as a friend and that I don't want to lose our contact by a difference of opinion between her and the consultants who gave the dx. She got the message in the end. Perhaps your friend also feels that she has a certain duty to give you her professional opinion - as a teacher? If that is so then she also needs a reminder of what friends are for.

 

Curra

[allsetuk]

Thanks for that curra - great explanation ...and i emailed her back .....i explained that what i needed most were supportive emails that to me were like normal and the closest thing to a hug i ever get ...and that she unsettled me by going on about this in such an angry way ...normally she is the most placid person ever ..i have never seen her write like this .....what i cant get my head around is what difference does it make to her ...that my son is diagnosed ....and if she knows so much about it ..how come she doesnt understand the term high functioning ....from what i have read on here many aspie children are more than capable of thinking in the complex way i described to cope at school

[KarenT]

I'm really sorry that this has affected your friendship in such a negative way. Unfortunately it's another example of how nobody can ever really understand what it's like being the parent of an autistic child unless they're doing it themselves. All the 'awareness' in the world, all the training and professional opinion, none of it means anything if you haven't lived it yourself.

 

I'm sure your friend means well, and I expect that she truly believes in the advice she's giving, but her knowledge and understanding of your situation and your son's condition are clearly inadequate for her to do so. YOU are the person who knows your son, YOU live with him and teach him, YOU are the person best equipped to understand and support him, and above all YOU know best.

 

Your friend has let her professional opinion get in the way of your relationship and she's crossed a line. Professionals give advice, friends give support. I appreciate that there are times when the lines blur but it's plain to see that she's let you down because support is what you need most from her and she hasn't given it. I hope you can get her to see that and put your friendship back on track.

 

Karen

x

[allsetuk]

thanks for that ....you are all making such sense ...yes i hope i can get her to see that too

[Noetic]

Although the NAS disagrees that this is a separate disorder, the concept of "pathological demand avoidance" might be helpful in understanding some of this behaviour, as that level of "devious" (manipulative, not naughty as such) behaviour is not usually the norm in autism.

 

This is a site that explains the concept, according to the NAS those traits can occur in people with autism, but Newman found that there was a subgroup where they dominate and these children respond very differently and need different kinds of adaptations than most people on the spectrum. In particular while kids on the spectrum often thrive on routine and strict rules, kids with this tendency will not benefit from this as much (often feel more under pressure, thus they play up deliberately to get out of what they perceive as undue amounts of pressure and unreasonable demands) and often tend to actually disrupt the structure for everyone else as well. http://www.pdacontact.org.uk/

 

This is the article in detail: http://adc.bmj.com/cgi/content/full/88/7/595

 

I believe Digby Tantam has also written about a subtype of ASD that is often misdiagnosed as Asperger, that shows more callous behaviours and a heightened ability to manipulate others, sometimes even delighting in hurting others.

Edited February 28, 2007 by Noetic

[allsetuk]

this is very interesting and thank you for taking the time to explain and point this out

[Noetic]

this is very interesting and thank you for taking the time to explain and point this out

You're welcome. I'm still in two minds as to whether I agree with Newson on this being a separate PDD but I guess if some bits fit it can't hurt to try a slightly different approach and to perhaps help understand some aspects of his behaviour in a different light (aspects that might make less sense if viewed solely in the context of more classical autism/AS).

[Bullet]

As someone who was only diagnosed officially with Aspergers last year, I'd like you to pass the following onto your friend, regarding some of the impact being on the spectrum without any support or any diagnoses can do:

Imagine being a toddler who is so hyper and who can have such a temper that your mum is looked upon pitifully at a time when things like hyperactivity are not known. Imagine being able to talk but struggling to initiate, imagine being able to hear and understand but sometimes you can't get your hands to move, or you can't get the words to come out of your mouth. So you can't let go of a ball to throw it at nine, you can't tell the teacher at 11 you need the toilet, you can't tell your mum you need the toilet at 13, until it's too late. Your headmaster at one of the primary schools notices you different but doesn't know why, all he knows is that you won't cope with the 11 + even though you are academic. Paediatricians assessing you for your height and weight note you are different and your parents both know but your mum doesn't want a label so she brushes things aside. Imagine being academically ok but practically, emotionally and socially behind those of your peers. Imagine going into town and finding the noises and crowds are too much, but you can't tell anyone so you just go quiet. Imagine going to university because you've passed all your exams and yes, people have noticed you're unco-ordinated and that you're rather scatterbrained and you don't have any friends, but you're academic, so that's all that matters, right? So you go to university and you can't cook or organise a proper meal most of the time and you end up eating your bf's toast and pudding in his meals for an entire term. You go home and your mum has to cut and comb your hair at 19 because you couldn't remember to brush it each day. Then you leave university and you get married and you've got this lovely dh who is the same bf who shared his breakfast with you. People grumble to your bf that you've ignored them when they've said hello, or say how a lot of the time when they see you outside you're in a world of your own and as the years go by they note how you never seem really relaxed with them. But you're academic and can speak, so what's the problem? You get jobs but you can't cope at the thought of teamwork, of thinking of other solutions to problems, of a job where you might have to be assertive and confident so all your jobs are very low level, but they're paying the bills, so that's all that matters, isn't it? You go through each day with not much sense of hunger so you often forget to eat and drink until it's nighttime and when you do eat it's not properly. You like everything to be done in a set way, you find yourself regimenting your walk to work with the time it takes and you have always liked counting in your head, patterns of numbers over and over. And you've stopped doing the handflapping and the pacing up and down and the banging of the elbows in public. Not in private, it still carries on there.

And then you have a child and he's having problems and difficulties which are picked up on early and a diagnosis is given. And you realise that what you've been strugglign with your entire life, little things you thought were just you, turn out to be part of something and you read the words of those parents with AS children and you realise that what their children are going through is what you went through, what you're still going through. Because somebody didn't want a label on you. But you know something? Lables only tell you what something is, they're not the product itself.

 

As for not labelling a child until they are eight, well, my Ds1 is now 3.5. He is verbal, but doesn't use language to communicate. He knows numbers, colours, shapes and some letters and can name objects in front of him if you prompt him by saying "that is a ..." Sometimes he forgets the objects, or just says "uhhh" in which case he's starting to use Makaton signs. He has the expressive and receptive language of a 21 month old (well, just under). He has said "mummy" maybe three times. He asks for things by dragging me over to the object and putting my hand on it. He has yet to verbally ask or sign for what he wants (including pointing). He will spill drinks on himself and not be able to say he's wet. He appears to have very little understanding of what words mean, or that they are used to communicate. He has a lot of delayed echolalia and some immediate echolalia. Potty training is a no-chance as things stand. He is getting more prone to dashing off and whilst very passive and happy has rituals and routines that do impact. In less than a year he is eligible to start school and I shudder to think he would be taught by someone like your friend. The one thing I will agree with her is the need for structure and discipline. However, there is a world of difference between a child being naughty and a child reacting to environmental stimuli.

Edited February 28, 2007 by Bullet