Autism with Aspergers

[angse]

My granddaughter is 17 diagnosed with autism with Aspergers, she has never been offered any help, even to help her live in this world taking care of herself, like cooking everyday tasks, she takes good care of her personal hygiene, my daughter or myself she won't listen to or can't listen to, is there anywhere we can go for help for her please, we have taken her to gp but she won't talk to him or answer his questions, so he says he can't do anything, surely he must realise that there is something wrong, she has had this condition all her life, or at least since age of three when we noticed it, diagnosed 4 years ago by nurse who specialises in this condition, and then nothing no help at all, any suggestions on what to do please. Thanks. Annette

[corriefan]

I have found this charity helpful actionforaspergers.org/

[angse in reply to corriefan]

Thanks corriefan will definitely try this out. Annette

[myhealthneeds]

Try the National Autistic Society. My husband has Asperger Syndrome and gets DLA for years as he gets lost and cannot cook or really look after himself well even thought he is very clever in other ways eg Music. You can apply for PIP for her but you have to be very specific in the answers. Can she look after her financial affairs? If she can't then you can fill in a form saying that you do this for her and you can be made her Appointee by the DWP, so you do all the forms and communicate on her behalf. If you ring the NAS they will give you the number for their Helpline via email and you can get answers to all the Qs in about 2 weeks. In your local area contact the Autistic Support Group and ask them if there is a service in the town / area for people with Aspergers or if they have other people in the Group with Aspergers or who are Carers. Specific Groups are gradually being set up. The Government had agreed plans for people with Aspergers as they were being tossed to and fro between Learning Disabilities and Mental Health, neither of which they have, and neither of which would offer a service. You could go to the GP by yourself and say the problems you are having looking after her, and this is causing you a problem and that something must be done to help you to help her!! The GP can listen to you telling her the problems she is causing you, even if she cannot listen to you speaking on behalf of another person!

All the best!

[myhealthneeds]

Also go back to that Nurse who diagnosed, or to that department and say, Look you made this diagnosis, what is now available to support my granddaughter? She needs help and we need help and where can we find it?

[angse in reply to myhealthneeds]

Thank you so much health needs. That has answered so many questions for my daughter and myself, I know know where to go and what to say, thanks to you, for years we have been fobbed of as all authorities kept saying can't do anything as she will not communicate with them , no she won't, I would have thoughtthought that they would have recognised it was part of who she is, now I am going to demand it, my heart breaks she has no friends, stays mostly in her room, she only full communicates with her mum and myself, she does go to college but she will be 18 this august so I think she does not go back in September, and I hate the thought of her isolating herself, but I am going to check out all the options and this time I am going to stick up for her rights until I am satisfied

They will offer her the help she needs, sorry to go on, and many thanks for your kind concern. Annette

[myhealthneeds in reply to angse]

Keep in touch. Will help in any way I can. I have two friend with children of the same age, a girl at college in York who is very similar to your granddaughter and a boy in Cardiff who is brilliant but can't even make toast or tie shoe laces! All the best!

[angse in reply to myhealthneeds]

Hi myhealthneeds

Will certainly let you know what happens, yes my granddaughter Le'sian is also very bright the things she comes out with are incredible, she comes out with things Einstein may come out with, Annette

[myhealthneeds in reply to angse]

Thank you. Hope your search goes well!

Miriam

[lulujames in reply to angse]

Hi Annette I've only just joined this site myself I no exactly what ur saying my daughter is 16 years old and I've always known since she was 2 years old she was different she was diagnosed 3 years ago at 13 with autism aspergers the relief when someone listened but also the heart ache of hearing the words and we also feel like yourself she was diagnosed and that's it. Everyday is like climbing a mountain with her we start reaching the top then something will happen and she will fall again we have to start all over again she doesn't cope with social communication load noises sensory with food she also has obbsesive habits she also stays on her room doesn't cope with the outside world at all its so hard when u have a child that struggles to understand.

[angse in reply to lulujames]

Yes lulujames its so sad when someone you love has this condition, but now I say it makes her unique and special in her own way, my granddaughter is the same they must really suffer emotionally, she has never shown any emotion, but I knew it was there just by looking in her eyes, 2 years ago my husband d died and Lesharne really broke down in tears sobbing I was so glad she was sitting next to me as we do have a strong bond, 1year later her mum my daughter gave birth to a little boy Lesharne also showed so much love and care, so things are slowly changing and she is not on medications although she has severe sleeping problems, so hopefully you daughter will improve to her capabilities !good luck. Annette !!

[angse]

Thank you Miriam, this time not giving in to the medical profession who think they know best, they clearly don't sometimes, they don't know her as we do, she has always had conversations with her mother and I from the moment she could speak, but with no one else not even family members, she has just started to answer their questions the last year or so, my daughter is physically drained due to I'll health so I will do all the talking to these professionals, saying that my daughter has coped brilliantly with my granddaughter, being abused in the streets by people who thought my granddaughter was just naughty, being told to leave supermarkets, amongst other things, sorry for going on, just so concerned, she has turned out a lovely girl thanks for all your kind help. Annette

[trekster22]

Her carers can get an assessment for support if they wish. My gran did this when i was (wrongly) refused a community care assessment.

Does it bother your granddaughter that she doesnt have any friends? Some asperger folk feel ok with being alone and without friends other are upset. This might lift a weight off your mind if shes happy without friends.

[angse]

Thanks for your kind reply, she says she doesn't want friends, its difficult to read her, she will have conversation with me when face to face, should I text her however, answers yes, no, or don't know, but we are used to that annette

[Qwan]

Does she speak to you guys? Maybe she's selectively mute and could do with alternative methods of communication at the Drs. She may just be very nervous or over stimulated there.

Drs places tend to be very bright, and if she has sensitive hearing, all the electricty is loud too. It's not nice if you have autism. Especially if you're being asked questions and you don't know why.

I'd see if you can get alternative ways to communicate with her, as that'd be good both at Drs and elsewhere.

I'm sorry the Drs just shrugged and given up like that, he should try to at least sign post you! There may be autism support groups near by?

But in all truth, there is little to no autism specialist support out there, which is probably why the Drs being so reluctant to help. Charities are the best bet, just research them and make sure they take on the views of autistic people seriously, things like 'Autism Speaks' are very harmful and ableist. But there are good ones out there.

It seems to be much harder getting diagnosed and help for female autistics for some reason too!

Good luck!

[angse]

Thanks qwan

Very good advice, I'm not sure, but she really does seem very selective who she talks to, I get the feeling she feels safe with my daughter and myself, but she does seem to wear earphones constantly, I am worried about that, she obviously has her reasons, she will now only go to gp to discuss sleeping tabs as she can't sleep and has been like this a very long time, which is another worry, I now will get on to some charities, and see what help we can get, although she goes to college, she has no life skills, and my daughter gives in all the time, so my granddaughter does not have to do anything, thanks for advice which I will act on. Thank you again. Annette

[trekster22 in reply to angse]

I was only interested in doing things for myself when I went gluten and dairy free. i also added in supplements 1 a week at a time and had strawberries to help me keep motivated.

Would she try university afterwards?

[angse in reply to trekster22]

Hi Trekster

I really hope she will consider university, will speak about that when I see her, as for food I will ask her but so fussy unbelievable, I will buy her strawberries because she does play

daughter up my daughter meant to say, and sometimes refuses to eat anything prepared for her. Annetge