kathyanne

omg..social services have declined help twice last year...however I will have to contact them again if i have too..thanks guys...im getting nowhere fast here!!ive done everything the DWP has asked..filled in and got every medical cert and letter they have requested..nothing...they still have paid him nothing! I have e-mailed His worker from MIND to see if she can help again....

I've done all I can ..appeal in..MIND Complaint in......letter to MP and DWP of complaint..letter to downing street..3 weeks in and still not a penny for him, no rent or even JSA....I'm totally disgusted with them..he cant work because he has the highest form of aspergers and has severe anxiety when in open spaces..the job centre and social services have refused to help him find a job he can cope with due to lack of resources....im at a loss:(

Thanks guys....yes, i have a letter from his consultant saying he cannot work at all as he has the higher traits asbergers.....i have contacted the MP, i am in touch with MIND also, they are trying but as yet, James hasnt had ANYTHING for 4 weeks..im so worried, he cant even pay his rent now i will seek legal action if this continues

Hi...i have done all that... i haven't had a reply off my MP, the minister, downing street, the council..the social security..nobody..they make me sick!

hi..i have just copied this post into this part of the forum just in case someone else reads it..thanks.. Hi..I need some help.. My son who is 23 has lost all his benefits...as I write this I have just sent an appeal form in for him... he hasn't been paid any benefits for 2 weeks , they have stopped his ESA and housing benefit...he has no money for food or rent, we have had to pay this but don't think I can for much longer...... I have rung the help line and they have said there's nothing I can do, they need his appeal pack before they give him anything back... My son has diagnosed High traits asbergers syndrome. I have a report 10 pages long from his clinical psychologist confirming this.... last year the benefits agency took his ESA away... just like this, we appealed, sent a report from his consultant and the decision was overturned..... that was in August 2012... they asked for him to return again for another appointment only 8 months later and did the same again...he saw a DWP doctor who stated in her report, that he could speak clearly, operate a dishwasher and had good eye contact so he was fit for work.....they have stopped it again...... I have been back to his clinical psychologist who was appalled and has written me an in-depth letter.... my question is..is this illegal to put my son through the appeals process so quickly after winning one only in August 2012?? who do I complain to? I have written to the local MP and London but have heard nothing.......what can I do? He is currently in a bad way and very stressed..his flat is is haven and I don't know what will happen if he losses it..... he has thretned to kill himself only last week..im distraught....please help...Kat.

They have all that information, i explain all that and they have three reports from his clinical phsychologist explaining this...what im asking is is there anyone I can go to higher up to complain about his despicable treatment from the DWP doctors?

Hi..I need some help.. My son who is 23 has lost all his benefits...as I write this I have just sent an appeal form in for him... he hasn't been paid any benefits for 2 weeks , they have stopped his ESA and housing benefit...he has no money for food or rent, we have had to pay this but don't think I can for much longer...... I have rung the help line and they have said there's nothing I can do, they need his appeal pack before they give him anything back... My son has diagnosed High traits asbergers syndrome. I have a report 10 pages long from his clinical psychologist confirming this.... last year the benefits agency took his ESA away... just like this, we appealed, sent a report from his consultant and the decision was overturned..... that was in August 2012... they asked for him to return again for another appointment only 8 months later and did the same again...he saw a DWP doctor who stated in her report, that he could speak clearly, operate a dishwasher and had good eye contact so he was fit for work.....they have stopped it again...... I have been back to his clinical psychologist who was appalled and has written me an in-depth letter.... my question is..is this illegal to put my son through the appeals process so quickly after winning one only in August 2012?? who do I complain to? I have written to the local MP and London but have heard nothing.......what can I do? He is currently in a bad way and very stressed..his flat is is haven and I don't know what will happen if he losses it..... he has thretned to kill himself only last week..im distraught....please help...Kat.

thank you guys any help would be appreciated, im hoping to try get some support now for him as no one wanted to know before diagnosis!! thanks again , kat:)

Hi... Just though Id share my joy with you all! After 2 years on the waiting list and at the age of 22 and many many times being told over the years by doctors that my son was just ignorant rude and no hope, my lovely 22 year old has been formally diagnosed as being on the spectrum. He goes back next week to find out how far along or whereabouts the spectrum he is.. does this make sense, they say probably somewhere in the middle?? He is so relived as are we... we almost felt like we were going mad, but painstakingly we kept on and on at our GP and then got another GP, and another, until we finally got someone to refer him on..... since that referal, james has come on leaps and bounds and is moving forward with life, we hope that his firm diagnosis will give him the help and support he needs to move on futher. all you mums and parents out there,..... plod on and no matter how long it takes , you will eventully find someone to listen and take you seriously. it took me 22 years, and i feel very angry with his school, college and other authorities who just fobbed us off and treated him badly, but we got there in the end..... one happy mum today !!!

hi there.. thanks so much for that, and i found the airport information really good... appreciate it .

Hi... Can anyone help/// we live abroad in NZ and my son who suffers from AS, is coming to visit us for the first time over here in december... hes flown before but only with us when he was younger, now hes an adult, he has communication difficulties and social issues like most with AS, does anyone know if airlines help asbies with airflights.. i.e getting to and from terminals etc... does anyone have any experience or are you an aspie that has flown alone and how did you cope?? i would really appreciate any feedback, kat.

Wow everyone... i did not expect all this fuss...I have just logged back on as been away, at the time I wrote it.. my emotions were high... basically.. he rents our flat and lives in there, there are 4 flats in the building, he was the only person to get questioned, the poiceman said that the woman above belived it was him who stole the mail/ Yes, he did dob his mate in for it! james also said the police were not sympathetic to him when he got anxious and he felt the officer was pointing the finger straight away before he had chance to say anything..... they didnt seem to know what AS was, and he felt hurt and stupid when asked if it made him steal.... i think there is a total lack of knowledge and compassion in this case and also a little predudice in there too... sorry if you dont agree L&P, but sadly the police this time have acted inapropriatly. Kat:)

Hi, i have just come on to have a rant as i know most of you will empathise with this. My son has asbergers syndrome./ He lives in our flat and has been doing really well lately. Basically, some mail went missing from the flat above so the lady who lives there knocked on my sons door and asked if he had seen it, he said no sorry he had not. This happened on his 22nd birthday. About an hour later, the police came to the door and started questioning him. James started getting anxious, so told the police he suffered from asbergers syndrome. The police went onto say........ ............. so , does asbergers syndrome make you steal mail ??............ .......... you can understand my horror and that of my poor son and my family family.... unbenown to james, his birthday cards with all his money in had been stolen too, we know who the culprit is.. unfortunatly it was someone who james let in and thought was a friend.We have been to the police and lodged a massive complaint. James anxiety levels have heightned and he is soo upset.. he is sick of being percived as strage, different and hates people taking him the wrong way.. hes a gentle lad, who keeps himself to himself and this is what he gets treated like.... just wanted to know your views on the situation.. thanks ... kat

Hi, My son is 21, im afraid that i too couldnt cope with the constant verbal abuse he gave me and his two brothers, and i moved my son into rented. for 2 years he tried to cope but just couldnt on his own,however he seems to have turned a corner recently...... we put more family support in place and visits... we also do his finances as he was just drawing his DLA and spending it all on drink... he just couldnt budget himself!!!now he dosnt have to worry about his bills , rent, and can just ring us up and ask us for a fiver here there and everywhere, hes a diferent kid..... he has his independance but support as well...we have managed to get him into college but know the only way of getting him there is for us all to take it in turns and drive him up....wee have tried the let him learn himself and learn to be independant in the past and it hasnt worked!!! we have to go in and remind him to shower, clean etc and ring him every day.... I do sympathise with you..life has been hell for us the last three years too.... everyones experiences with asbergers are different, some seem to cope well independantly, and others dont.... do what you know is the right thing for now.... kat:)

Hi Just thought id give you a quick reply.... my son has asbergers and is 21.... the worst part was when he was 15-16, probably due to hormones too... He seems to be melowing out now and being much more accepting of his asbergers, he also now trys to self help and is much more independant, so as your son gets older , things may get easier.Your message is a little confusing....its so hard to give an answer to your question. I guess, as parents we have to accept their asbergers and know that their behavior is a part of that, just being there, listening, and accepting their views( although these can sound irrational to us!) is so important. your son will thank you in the future for being there and at least trying to understand his world.Good luck.....life is always going to be a struggle, but we can make it easier by being a shoulder for them kat.

Hi, how terrible, I came on here new myself with a similar story, i have been fighting the system lately for my son, and getting nowhere. he did very similar things, i hated him as a teenager, he was so nasty to us all, everyone said that he was a bad one and just the way he was, from 16-19 i tried to get him diagnsosed but nothing , he wouldnt go to school in the end he hated it so much and curled up into his own little dark life. grrrrrrrrrrr i am so sick and frustrated, now at 21 we are making slight lee way and he may get assesed, he has seen 1 junior doctor and is due to see a senior phsch at some point.. when>>i dont know.his social worker never sees him because hes too busy ;( i feel your frustration i really do, but dont give in. James is my boy and i wont give in until im listned too and hes assesed and gets the things hes entitled too. Its true, you know your child better than them and gutt instinct says a lot, stick with it, the national autistic society give great advice and help , i am liazing with them at the moment re help and support groups... try them. good luck... your not on your own, ul get there in the end. kat

Thank you

how long have you been waiting for?? what does OASIS stand for as when i google it all sorts of stuff come up?? he went for an appointment today for his sickness benefit with my dad where the doctor said basically im no expert but it dosnt look like u have autism to me, u are just depressed. at least you know your not mad. aghhhhhhhhhhh the man only got an hour with him and dosnt have to live with him, how can he make that assumption ??

Yes, I know, im very angry, he had a terrible time being bullied at school, and teachers always said he was the problem and no one else:( he eventually just refused to go and hes so intelligent too, ill have a look at the links provided in my inbox, thank you, i dont know if ill get anywhere as the social worker i have wrote to has ignored my letter up to now, howeever ill plod on and demand assesement from the GP and support, does anyonre know who i ask to get him referred to for assesement?? thanx, kat:)

Hi Im new on here, im so so sorry this is the longest thing ul probably read if you get through it, i just pray some one is out there that can help?? My son James is 21 now, from the age of 7-8 he would play in his room on his own with his guitar, or paint toy soldiers, some would call him the boy in the attic... I was a single teenage mum so didnt know any different and didnt know he was different to other kids. looking back he did some very strange things but i cant change how i felt and wanted him to be normal. i remember shouting at him in his early teens to open up and talk to me, but he always had a blank expresion and he never confided in me for anything. By 14 he was off the rails, so i thought... he stopped going to school and spent most of his time in his grandmas spare room with the curtains shut and earphones on, he would come out night in his hooded top, and not speak, he smoked a lot of canabis and listened to music all the time, i couldnt communicate with him. His moods were terrible and he always threatned to kill himself, he would fly off the handle and throw knives at the wall, i had two other children , was scared and didnt know what to do ?? when we went on holiday, he would sit alone on a table with a blank expresion on his face, ear phones in, i took him to the doctors, time after time from the age of 15.. he was refered to phsyc who basically told me.. hes just another statistic, lazy, hel be ok when he starts to help himself!! so, i belived that!! by 19, i never saw him, i had asked the authorities for help and he moved into a supported house where they had lots of rules. he was kicked out for breaking the rules 3 months later, he basically wouldnt socialise with the others and take part in the activities with them, he locked himself in his room, his personal hygeine was terrible. I went to the docs again.... he has to want to help himself is all i got:( His gran, whom james calls his guardian angel took him back in to her house, i couldnt cope, we thought he was rude, ignorant and lazy.. infact i thought james hated me.i would ring everyday, hes in his room, he only comes out at night shed tell me, he never talks.. same old story. I was offered a job in ED in NZ, so moved with my youngest son Adam and husband Nick,Perry my middle son was finishing off college and would be following soon to be with us. I saw james before i went, he didnt say a lot but he did turn up to our leaving party... he had the same old coat on he had had for 6 years, we couldnt get him to take it off?? and earphones in at my party.. how rude my dad said, i agreed, he smelt, i felt embarrased as we all had tried to help him... i now belived what the authorities were saying about him. so... i moved to NZ..... i missed him terribly though and would ring his gran every day.. same old story... hes in his room, hes depressed now kath she said, i cant get him out. eventually, evelyn, his gran had had enough and showed him the door, we payed a bond and got him a room in a rented house with some others , we thought this might help him, and he needed a supported enviroment. It was 18 months after i had moved to NZ and I was about to return to visit him and his brother. What a shock i got when i returned. 18 months had passed and i was so pleased to see him, james had turned up at my mums house to greet me, hi mum he said, ive missed you. im taking you away for a few days with grandma i said, a small holiday where we can all spend some time together and have fun, im taking your brother perry too... so we set off for blackpool the next day to go on the merrigo rounds and fair/ rollercoaster etc. when we got there i looked in his case... he had not packed any clean clothes and everything was unorganised. no tooth brush, smelly socks packed, it was terrible, i went out and bought him loads of new clothes but he wouldnt wear them... also he refused to eat with me mum and perry in our hotel... everyones looking at me he kept saying... when i did drag him downstairs to eat one night, he lost his appetite and looked around the room paranoid. lets go to the fair i said. we all went out.. we got to the fair ground and james nearly freaked out, he looked confused and put his hood up around his eyes, ear phones in again... i shouted at him... you ungrateful ###### i said.... then i stood back for a minute and something in my head snapped for the first time in 21 years.... oh my god mum i said.. watch him..... just observe him.... mum was a social worker and i was a nurse.... why hadnt we seen ??? what are you listening to i said on your earphones??? static he said... i opened his jacket and the earphones were not connected to anything.. he was listening to fresh air.....i sat him down, and from that moment on we realised he was wired up different.. he tried explaining to us that he didnt like being there, it was too much of a change and he felt out of his depth, i decided to get him back into his comfort zone and we set back off for our home town... maybe hes got asbergers syndrome my mum said.. i didnt know what that was .. i had 10 days left with him, to sort a doctors appointment out, get him on sicness benefit because he had been warned by income support that he would loose his dole because he refused to work on a busy shop floor as he said he got clostraphobic!!.... i managed to get him a phsch referal.... and my mum has moved him into hers for now. we also have a social worker for him....we have all read up on asbergers ... all the family and everyone agrees that it is ilke reading a book on him... however.... his social worker says he needs to come to appointments on his own and he refuses and stays in his room, he agrees to go with someone but his worker says that at 21 he needs to help himself... his worker has only refered him to an elderly day centre where elderly people go to play bingo... we are all bemused... a junior phsychologist saw him and assessed him and told him a senior phsychologist might assess him futher, but we havent heard a thing and that was 6 monts ago.. i have written to his social worker, gp , and phsych doctor and have got no where. James has no friends, cannot do simple tasks on his own, my mum is getting old and needs support with him, i cannot cope with him again as hes such hard work and cannot find a job to go back to in the uk to support us. He now very seldom comes out of his room, he always has the light off.he does play on the play station.. my mum says maybe 1 in every 4 days hell come down stairs to socialise. he steals alcohol when he can and gets out of his head, he dosnt know when to stop drinking, hes sensitive to light, noise, has few motor skills and gets confused with washing dressing personal hygeine, he cant operate a cooker and cant go shopping. hes very lonely and tells my mum hes a social misfit with no one to turn to. he feels totally unloved.......i speak to him every 2 days on the phone.. he says he wants to study, but college wont take him seriously.. he lost a job for weraing earphones at work when he was 17, and now hes lost all confidence....... What can i do.. where can i go to get him diagnosed... we need to know that there is something we can do for him as a family....this is turning into a nightmare... any help would be so much appreciated,Kat.