karenann68

hello, my daughter is 20 and was diagnosed about 2 years ago, she does nothing all day but sit either on her laptop writing stories or drawing manga type drawings. my concern is over the weekend she went with us and her sisblings to my dad's birthday, my dad's lady friend's granddaughter was there, she is 3 and was making lots of noise and my daughter was very distressed by this, normally in this situaition my daughter will ask to come home, i asked my dad if she could have some paper and pencil and she sat there drawing the rest of the time, she still wasnt 100% happy but she didnt demand to come home, then yesterday she went to a friend's house, i do have issues with her friend (more on that in a moment) she was round there and some younger children were firing foam things at everyone, which deeply distressed my daughter and then these children were throwing things, she started shaking and crying, in the end she came home. she hasnt really "done anything" since leaving college two or three years ago and recently was in a self help thing set up by this lady who was an intensive support worker and helping my daughter, she met this girl there who is VERY LOUD and has ADHD, this girl is my daughter's only friend, but when this girl comes round she is reluctant to leave and as i say VERY LOUD, my husband works nights and if i am there i have to keep saying to keep voice down, as a result i have said she can come round once a week. when my daughter phones this girl, the girl's dad has called the friend a lesbian to my daughter and they often wont pass on the message my daughter has phoned, they have also said that my daughter cannot phone more than once a week. my main concern is about the 2 recent episodes where my daughter has paniced and the fact we are due to attend a wedding at the end of the month, my husband has already said we WONT be coming home when she demands to go, and my biggest fear is she will have an episode there in front of everyone

thankyou for your help and kind words, i am finding it all very difficult at moment and hadnt known where to turn to for help, as i say when i saw the GP he wasnt much help, i did think once they get a couple more doctors in at the surgery later this month, about popping back and seeing if there is anywhere they can guide me for help, as it feels like i am fighting in the dark the money side of things worrys me too, all she gets is DLA lower rate for both parts, we get no more family allowance or tax credits, i did think about taking her down the job centre but i honestly dont think she wants a job, so we are supporting her, the DLA goes into her bank account. what also hasnt helped is the place that helped her get diagonosed there is a lady that works there that has been most helpful, and is a counselor at connexions too, she keeps saying that my daughter cant do certain things because she has AS and she shouldnt be doing certain things but she was doing them before she was diagnosed ? once example is getting the bus home from the art club, my daughter was doing it perfectly fine, i would send her brother down to meet her off the bus if it was dark but this woman is saying she shouldnt be doing it. also i suggested that my daughter do once morning a week in a charity shop just for confidence etc, and this woman has again said that my daughter "couldnt cope" the other problems i have is eating, she will only eat certain things and clothing as a 19 year old girl she should love shopping, but she refuses to go, or if i take her as soon as we go she wants to come home straight away, same with any visiting-- although we rarely see any of my husband's family, and if we are going to see any of them, because of the cruel comments they have made in the past she refuses to go, and i cnat say i blame her. with her clothes she will only wear the same sort of clothing ie tracksuit type bottoms and t shirts i have tired getting her jeans etc but she wont wear them, another problem is because of her lack of motivation and excercise she has put on alot of weight, i suggested she does wii fit, or goes for a walk just round the block once a day for fresh air, but she just sits there either on the pc, or watching tv or drawing it is very sad to see her like this, and as i say it gets me down, specially as i have to keep reminding about personal hygine, she will change her clothes okay, but it doesnt enter her head to wash brush her teeth etc, and i have to TELL HER to wash her hair, or that i think she may need a shower, and dont get me started with her managing her periods

hi my daughter has just turned 19, she was recently diagonosed with aspergers. it took over 18 months to get the formal diagnosis through, through her entire school life she suffered chronic bullying and would always be reluctant to go anywhere, and if we did as soon as we arrived she would want to go home straight away. i put these down to just the way she was, alot of people including most of my husbands family made cruel and unkind comments about her saying she was "sub normal" or "there is something weird about E" the diagonsis came about by an art thing she used to go to with a boy at school, it was a young centre that dealt with many young people many with housing or homelife problems, one of the ladies that worked there suggested my daughter saw a child psychiatrist who mnet her and then us and did this question and answer thing, and comfirmed that she did have aspergers and said we should apply for DLA, it took nearly a year to get the report from him, in which time my doctor, who was fabulously understanding and very good took early retirement, so i took her to talk to another GP as they were short i couldnt choose a lady GP and we saw another doctor that she didnt know, she really didnt like it, but i was with her to reassure her, he was not at all helpful, i explained the fact that my daughter didnt want to go out etc and he didnt really help in any way. my daughter was hoping to enrol on a childcare course at college, but they said she couldnt do it due to her aspergers and when she was on her other course, they would quiet often change things at the last minute and she would get upset, when i explained why this was happening they said "your daughter is using it as an excuse" so now she has no college course, i dont get any family allowance for her since she is 19, she does get the low rate DLA for both parts, until 2012 my main concern is she just doesnt do anything, she will just sit there all day, i run around like an idiot getting housework done then go out to work and she just sits all day mainly drawing or on the computer playing games she complains if i want ti listen to any music, she waffles on all the time and as she has been at home since april i am finding that it is getting me down, i leave for work early just to get a break from the situation. she isnt even going to her art thing anymore, she does have an intensive support worker and we are due another meeting with her psychatrist, but as she is 19 she is no longer under the child services (which is what he does) and they are trying to get her seen under the adult services i just dont know where to turn for help, and worry desparately for her future, i have only told my sister and the college about her diagnosis as that is what both her and i want--- she also seems to have got alot worse since the diagnosis, both myself and my husband notice this