jlogan1

hi i too have dd of 15 was diagnosed at 14, and son of 14 who is being assessed also daughter of 11 who is also being assessed,takes a while to get head round and up til she was about 10-11 we didnt even realise there was a problem! then it just snowballed as though she had hit a brick wall and had been acting her life out up til then!this is a good forum to see other peoples experiences and also makes you realise you arent the only one going through it and there are lots of similarities and not alone! regards julia

am just after advise or peoples views,my dd of 15 was diagnosed just over a year ago,but has not been to school since leaving primary,so over 3 1/2 years ago,have ds of 14 who has been out of school for about 1 1/2 years although no diagnosis yet,still working on that one! and dd of 11 who is also being assessed and goes to school as many times as can get her there!!! social services have been involved since about last april as they said because problems with all 3!i spoke to ss yesterday and she is talking about a childs plan,which has been mentioned many a time over the last 4 years,but what does it actually mean?im not sure whether its just for one or all three have meeting on tuesday next week but not sure what im looking for? any advise greatly accepted! regards julia

hi just to let you know it didnt work,didnt matter how much convincing i did the walls came down at 4pm yesterday and decided he couldnt cope with going into school!!! not too surprised,arguement went on well into early morning,him comimg out with any excuse he could find ,worst bit being that when he then says he will go next week and i say yes have heard it before and never happens that is why he should do it now,he then says i am knocking his confidence and strops off!!!so we will see what happens next monday but wont hold my breath,have tried saying go its only an hour and at the end if you cant cope again fone you tried but just wont do it,wouldnt be so bad but he has spent the last 2 weeks since he said he wanted to go enthusing about it ,never mind here goes another day !!

mine chews the sleeve of his hoody,and our situation isnt helped by the fact the home tutor(who he sometimes sees at the local community centre)because he doesnt want his space invaded,is the wife of the head of social work department,who tells me he knows best!but at the end of the day he doesnt have to live with it he goes home!and i'm left to deal with unhappy children,hope things all work out and work on the basis it can get better!

well from my experience i wouldnt let then get involved again,i told our s worker just before xmas why my dd wouldnt see her,had been putting it off for weeks but got so fed up with sw phoning and saying she was coming round for dd to say not seeing her,that took the plunge and said' dd told you something and when she heard you repeat it it was all wrong and therefore you hadnt listened to her'and where as most people would just say never mind dd wont do that ,but sw should know that if she deals with autistic and aspergers,good thing is havent heard from her since ,told her the ball was in her court as to how she was going to sort it because i was fed up with trying to tell dd that it didnt matter when to dd it does matter!so at least we have had nice peaceful xmas and new year but expect phone will ring this week!obviously i want whats best for all my kids but just dont seem to get the help from ss,so will just try and manage by myself,at least the house is happier that way. also my ds has lots of reptiles and lizards ,can you believe s worker told me i should take them put of his room (like i have a mansion and could put them elsewhere!!) and he like you son lives for xbox and his virtual friends in america who are on a different time so he spends tome at night on it sw say we should turn it off at 10pm end of story,my answer would be at least he is communicating with people if we turn it off he wouldnt speak to anyone!funny thing was when we told paediatrician what sw said her answer was 'no way you cant just take away the things that are important to him' so at least we have her on side,but just goes to show do sw really know what they are dealing with?we just live day by day each being different and walking on egg shells at moment because i know if ds gets upset between now and tommorow morning he will not be able to get into school ,so just keeping fingers crossed,at least it will be a step and then perhaps sw will back off!but as you said and i totally agree education is bottom of the list at the moment its just getting through each day and all we want is happy kids not ones that are so miserable because they are being forced to do things that they cant,i just hope that in time things will improve,my dd now goes out in the car 2-3 years ago she wouldnt have even done that so there is light at the end of the tunnel just depends on each child how long the tunnel is!!!with 3 of them our tunnels are pretty long ! when you say it effects on how he walks is that beacuse he you can see lack of confidence,difficult to describe i know but my ds is like that doesnt stoop or anything but just doesnt walk with any confidence,as though he would like to just fade into background and hunch up. i dont know kids what we would do without them? mind you without out my cat i think i would turn doo lally,at least she takes my mind off thngs! regards julia

i have to reply with regards to above comment that social services say they only work with children with learning disabilities,my experience is that we have ss involved because they say because i have 3 children with'problems' ,my eldest dd is comimg up 16 and was diagnosed just over a year ago ,has not been to school for over 3 1/2 years ,ds of 14(sounds very much like the above but without any violence) who has not been to school for over 11/2 years and dd of 11 who is showing the very signs that eldest dd showed at same age,neither of the youngest 2 have any diagnoses as yet but are both being assessed,going back to ss,we were asigned a socail worker about april last year and i must admit all has not gone well and would prefer it if they were not involved,all i seem to get is hassle of ds 'must go to school' and must do this that and the other ,they totally miss the point that he is not in school because he doesnt want to go but because he cant deal with it!( saying that he going going to try going into the schools 'base unit ') special needs dept tommorow for an hour! this is a very big step for us ,as he has often been unable to see tutor and unfortunatly none of the kids like sociall worker and will not see her,the elest says she doesnt listen to her so thinking very rigidly says if sw cant be bothered to listen there is no point in seeing her!ds just cant deal with seeing people,he sees a nurse at camhs( we were told they didnt have any one else)but he is comfortable with her and thats the main thing,but i would just be wary of letting ss involved,they have given me much more stress that i had before and am on the verge of telling them dont want there help.they seem to be very archaic in that with regards to my ds who at 14 is nearly 6 ft at a previous meeting i was told'we deal with autistic children every day,they must do as they are told and if it means making them( phyisicaly)go to school then that is what should happen' so we have had disagreements as they seem to look upon children should be seen and not hear! none of my children have learning problems so therefore at 14 i feel he should be able to say what he thinks and it should be taken into consideration not just 'do as you are told' sorry have babbled on here,just infuriates me so much sometimes. regards julia

my kids inability is not so much the work but the social side,they are unable to even see the support teacher( although of late at least i am getting my son there)we see her at the local community centre because he cant deal with being in the school and will not see her at home because he feels that is his safe haven.but i wish there was more for both of them to do,neither of them are stupid,my dd spends a lot of time scouring newspapers and when she finds something that interests her she will realy get involved,unfortunatly it wont get her any exam marks though! there needs to be more skills building,learning about what goes on in the real world,not just where do you put a full stop and comma,lets face it how often do you use pythagoris therom !these kids dont fit in with the norm but should still have a chance to learn skills,but there is nothing available!

hi i totally agree there is not enough out there i have dd who is now 15,diagnosed with aspergers only last year ,she hasnt been to school for 3 1/2 years,has had virtually no help,and now looks upon it as 'well i'm never going to get a job because i have no qualifications'we have tried so many things ,but due to her being unable to go to school and unable to socialise where do we go?she has been let down so badly on the education front that unfortunatly her way of thinking is ' well they couldnt be bothered to help when i needed them so why should i do what they want when they do finally offer anything' she is very rigid on this although i have explained that it will help her in the long term.we were told we would get a support worker 3 1/2 years ago which they have only just sorted,then to be told it will only be till she is 16 in march,she has enough trouble meeting anyone new anyway let alone only getting them for 4 months! i also have a ds of 14 who has been out of school for 1 1/2 years ,he gets a whole hour a week tuition!!!he is being assessed for the same,but there seem to be no alternatives to the bog standard exams ,its a case of either go to school and get on with it or go without! leaves a very bleak future for kids!!!

hi thanks for all replies,education wise we have been told we have been let down as no she has just had very patchy education for the last 3 1/2 years ,unfortunatly she feels very aggrieved by this and her thinking is very rigid on 'if they cant be bothered why should i when they do do anything'she has just been given an hour a week ,but the teacher ,although dd has got to know her,keeps going on about painting but dd is just not interested she is very much into photography but cant seem to get this over to teacher,so it doesnt inspire dd to see her.she will be 16 in march,the careers advisor came to see her the other week but she ended up in tears and couldnt see him,the last time she saw a male was 3 years ago long before we knew of her diagnosis and he was from SS he took her aside( she had been through a bad spell and had turned on me,only scratches nothing serious)but he was a very large man she was 12 and he told her of she was to ever do that again she would be reported to the police!!!this has terrified her so much that she couldnt deal with the situation. yes i am very concerned for her future,but the biggest problem we have is her rigid thinking,the Social worker said something that upset her so thats it people only get once chance and then thats it she wont see them,not that we have anyone else,social work promised us a support worker 3 1/2 years ago ,they have just sorted it out but have told us this will only be til she is 16 in march,so of course she looks upon it as its taken them this long to sort it what is the point in getting to know someone for such a short time and then ss taking it away again,she has enough problems seeing and getting to know people as it is.to be fair to her she does go out a lot more than she used to but will only now go with me or her dad,she did go a few times with social worker but as said she said the wrong thing so now daughter wont see her.i just feel that social work arent getting it,no one is helping us to help her get over her fears and worries they just expect her to do as told,without giving her any support,but where do we get that support from?

hi just wanted to find out if anyone else has been here?my dd 15 was diagnosed last year,she hasnt been to school for 3 1/2 years ,isnt really provided with any education,so generally does her own thing.BUT the social worker is getting funny with me ,my dd doesnt like her and they just didnt click,but she is saying dd has to see someone,she is quite happy by herself she has one friend whom she she perhaps 1-2 a month but is happy in her bubble,i have tried to explain that as she gets older she will need to see people but shes just not interested at the moment,social work are saying she has to!please can someone agree that i shouldnt make her if she cant deal with it,and hope that all will come good in the end!i can try and try but am not prepared to force her especially as she is happy,the last thing i need is an unhappy child( she has self harmed in the past)and i have 2 others being assessed for AS.any one else been her ?julia

hi i have a dd of 15 diagnosed with aspergers a year ago,a 14 year old son being assessed and also a 11 daughter also being assessed for the same,whilst managing to cope with all this social work are involved because the older 2 dont go to school,my dd never managed secondary and hasnt been to school for 3 1/2 years and my son has been out of school for 1 1/2 years ,they just cant cope with the social side and cant be around other people so spend most of their time at home!!! getting to the point(sorry rather long story!)my son has no friends and the only contact he has is with youngsters on his xbox however most of them are in america,leading to the problem of time difference so he stays up late at night just so he has someone to talk to.i can deal with this most of the time as it is the only social contact he has all be it not face to face,it is better than him talking to no-one!!!( please bear in mind eldest daughter also has weird sleep pattern that goes round in a circle ever month where she gradually changes her sleep from day to night and back again)but what has really insenced me is the social worker has mailed me to say we should cut the internet connection to his xbox at 10pm every night and he also has a love of reptiles and has many in his bedroom,social work have suggested we take them all out of his room(where we are supposed to put them who knows?)so impossible. he has just started seeing a teacher twice a week for 1/2 at a time and gets to this so i just feel social should back off and leave us alone,basically if he has an appointment he gets to it,so when he sleeps is rather irrelavant. everywhere i read that people with aspergers have sleep problems but why are social work ignoring it?yes in the real world it would be great to have him sleep at night but he obviously has a problem and surely if this is the only contact he has it shouldnt be taken away from him? has anyone else had any of these problems would be nice to hear? regards julia( who has just about had enough of social workers!!!)

hi i have 15 year old daughter diagnosed a year ago ,a 14 year old son being assesed and 11 year old daughter also being assesed,its a long winding road!!!but learn a lot on here.

hi my dd is 15 and was only diagnosed last year ,she went through tooth extraction last november,she had 7 baby teeth that would just not go,and she ended up so stressed out by it ,wouldnt smile or talk to people etc,if you could bear in mind she hasnt been to school for over 3 years because she finds it so difficult to go out , or go anywhere however we had a wonderful dentist who was attatched to the hospital and originally we were told we would have to wait at least 6 weeks for anyone to see her ,then suddenly it all changed when i explained the aspergers and they fitted her in within 2 days,she went into the hospital on the childrens ward had a general anaesthetic ,and she came out a different girl,she is now happy to go to the dentist( which she hadnt done in years) and got on so well with the staff it was excellent,they made her feel wonderful,she was just in for the day but it solved all her teeth problems in one go,so if he is too stressed go for the general.hope this helps. julia

i too have had a look and am impressed,there is info on there that i have been trying to find for a long time ,hey presto found it!will certainly be having a longer look.

hi ,i too have son of 13 no diagnosis but older sister diagnosed about 6 months ago at the age of 14 ,she hasnt been to school for 3 yeras my son hasnt been properly for nearly a year ,but is getting more difficult as time goes on ,he doesnt want to go anywhere or see anyone ,the school have recently provided out of school tuition for 2 hours per week ,but he just struggles so much,says he has his reasons but cant say what they are,and sooo sensitive,anyone else have this problem,we end up being too frightened to say anything,like have a shower! he takes it as having a go and the more we say anything the more he just digs his heels in!!but its anything that a 'normal 'kid would just ignore ,anything that could offend he takes so personal and then just clams up ,even his school have said they have never dealt with any one so super sensitive,he very rarely sees any friends but will facebook and talk on xbox but seeing someone face to face he just cant deal with.is even trying to get out of seeing CAMHS,socail work are involved because my dd of 10 is also having social problems at school and all they say are 'you must MAKE him go to see his teacher etc'but they seem to forget he is 13 and 5ft 8 inches ,great if he was 5, was different then,so any advise from anyone on this point would be good,but just take one day at a time.

hi im in the highlands ,just, we have done ADOS for my 15 yera old dd,and have a 13 year old and 10 year old also showing problems,but the one thing we were told was they have to show the triad of traits and the other thing was it had to have an effect on their life,ie my 15 year old hasnt been to school for nearly 3 years now and very rarely leaves the house,but she was only diagnosed 6 months ago,not sure how old your son is but we too are finding not enough help,my 13 year old son has also been out of school for nearly a year,these people come up with lots of ideas but dont actauly have to live with the children,but i would say just keep pushing and keep a diary of the weird and wonderful things that he may do that way you can show them,thats what i do now otherwise you forget.we now have social services involved as it seems all 3 have problems but still cant say that much is being done.

hi i'm from scotland ,round near inverness ,have 15 year old daughter diagnosed about 6 months ago, 13 year old son having problems and hasnt been to school for nearly a year,and things are being looked into and 10 year old daugher whos having problems as well!!!so am still relativley new to all that is going on, but learning fast!

hi have a dd of 14 who has just been diagnosed with aspergers and has been out of school for 2 1/2 years this sounds great have looked at their website,unfortunatley they dont seem to cover scotland!!!

wow 16 hours a week my dd of 14 has been out of school for 2 1/2 years the fist year we got 45 mins 3 times a week at the school, but i didnt work the second year we had nothing ,now finally we were getting 1 hour a week and the teacher txt me yesterday to say we can have 2 hours a week!!!any one any advise how i can get more ? julia

hi just wondered if anyone has any advise my eldest dd of 14 was diagnosed with aspergers about a month ago( had been waiting 3 years since things started going wrong)we have an appointment with autistic unit on tuesday to give us the full details,however also have a 10 daughter who over the last 6 months or so seems to be acting in some of the same ways,feels like deja vu!had her crying her eyes out last night saying she feels as though she is getting shyer with people and doesnt like doing solo talks at school and going up in assembly to collect things infront of everyone,this is how it all started with my eldest daughter,but youngest one cant remember that cos its going back at least 4-5 years ago,and its the silly little things like she has stopped eating her lunch at school ,comimg home starving but wont eat at school,this is what eldest one did and now doesnt eat in front of anyone.the youngest one has also started pushing away dad if he wants a cuddle,she doesnt like being cuddled,with the eldest one it was as though she hit a brick wall and decided couldnt cope anymore as though til then her whole life especialiy out of the home had been a pretence,i now feel as though the youngest is going the same way!!eldest doesnt go out anywhere,not even school and to get the youngest out is sooo hard we went shopping yesterday and i dared to park in a different car park,cant believe how upset she got,didnt have any further to walk but was just a different car park! as though she couldnt deal with the change.sometimes i think im just being paranoid or is it just me? or should i mention something to the autistic unit and her school to get them to keep an eye on things,the thought of having to wait for years on end before anything emerges is quite daunting,sorry such a long post just wanted to see if anyone has any advise is it hereditory or am i just making a mountain out of a mole hill? julia

hi and welcome,i too have a dd of 14 and she's just been diagnosed in the last month,although it has taken 3 years from when things all started going wrong,up til that point she had masked her situation and the weird and wonderful things she did we just put down to 'her being her'we had never realy herad of aspergers until a year ago.we are due a appointment next week to hear the full results of ADOS that she did a few weeks ago,but she doesnt go anywhere and hasnt been to school for 3 years!we get a whole hour a week schooling !!! but at the end of the day even with a diagnosis she is no different,hopefully it just means we can learn to deal with things and now know what we are dealing with,saying that she did come out to a xnas shop on friday( first time out for months)and and was very panicy,and although very confident at home reverted back to like a small child and held my hand the whole time but was still great to get her out.anyway good luck with everything and at least you may know what you are dealing with which i find helps.regards julia

hi i have just started recieveing careers allowance,and yes to begin with thought how can i get paid for looking after my dd of 14 seemed silly,but saying that she doesnt go to school so she is at home 24/7,i work self employed from home but if she were at school i could get a full time job and earn more so i decided to go for it.took about 2 weeks i applied online and then got a phone call saying it had been accepted and they will backdate for 3 months( nice lump sum especilayy with xmas loomimg)all i have to do id if my wages go up substantially i have to let them know,and thats £53.50 per week,i then phoned tax credit yesterday and although its taxable they say it wont affect tax credits this year and just include it in total income at next review next year.yes i do feel guilty taking it but it also gives me a bit extra to be able to get things for dd to do whilst at home as she only gets 1 hour of education a week!so my advise is apply on line and go for it,good luck. regards julia

hi glad you dont feel so alone,at the end of the day i found fighting didnt help i spent my dd first year that she should have been at secondary school fighting trying to get her to go ,and yes she did for 45 minutes 3 times a week but looking back she was more stressed and i was spending 24hours a day fighting,now ive let go, ok her eduaction has suffered but shes clever and if she wants to will get her self sorted later in life,but she is so much happier and that makes me happier,although saying that her being at home 24/7 is very hard,especialy when she is awake at night and that means she can wake me anything up to 8 times a night just to come and rattle in my ear about her favourite music or film!!!but whilst we were trying to get her to school we went through self harm( only once but that was enough)and now we dont get that and there is no way she is depressed.hope things work out ,most people will probably say i'm wrong but her happiness is a big factor and if that means staying in her room ,not going out and not socialising well thats it for now regards julia

hi i have dd of 14 who has just been diagnosed 2 weeks ago with aspergers,she hasnt been to school for 2 1/2 years and very rarely goes out and if she does it is only to go walking through neighbouring fields,she spends the majority of her time in her room and even changes her sleep pattern to be awake at night when no one will bother her(she has brother of 13 and sister of 10)and will then come out of her room,we havent seen psycologist for over a year because dd wont go out,but one thing we were told was to lower out expectations for dd and at the end of the day if she is happy that is what matters,this was very hard at the time but over the last year i have accepted this and it has made my life a lot easier,she now sees a school tutor for 1 hour a week( this has only been sorted this term,previuosly to that she hasnt realy had any education for 2 years)but it helps that she gets on with teacher,so although it is hard i think sometimes it is better to not fight them,if they want to be alone and it makes them happy perhaps try to accept it,always hoping that things will turn around and change.a year ago my dd wouldnt see anyone now she does see teacher,so although it is small it is progress,and something that she can deal with.i know this may not solve any problems but just to let you know it helped me and dd,still a long way to go. regards julia

twilight books .we are onto our second set because the first are falling apart and dare i say my dd has even changed her name to 'demetria'after demetri in the book!!!however i only use that if shes in a bad mood when she informs me my name is not lauren!!and yes as with you she had no real friends i remember seeing her 5 years ago wandering the playground at lunch time by her self,it was heartbreaking ,but 'shes shy,quiet,likes to be by herself',she would even refuse to go up in assemblies to recieve certificates and would even avoid being given housepoints so that she couldnt win anything,she has one friend who she sees perhaps once a month,but has never been to academy( she should be in 3rd year)and doesnt really go anywhere apart from walkies during the night we are pretty remote luckily.academicaly she was and is bright but all the school have managed to come up with is 2 exams and a city and guilds online.mind it is very difficult to get her motivated,because she just wants to waffle on about her own thing when she does do some work she does pretty well,but we only get 1 hour a week tuition.sorry new to all this still what is CBT? and hey look 84% wouldnt that be great i have dd 24/7, so i woudnt worry about that( i can wish)right off to get younger one ready for school! regards julia