Hi everyone New to your cocommunity

[angse]

Hi all

Need advice, my granddaughter who is 17 years old was diagnosed three years ago with Autism and Aspergers, very late diagnosis I think after my daughter and myself bringing her to every medical person you could think of for years since she was three years old in fact, they all put it down to behavioural problems, she would not mix or make friends at all, this all from three years old, myself and my daughter would literally have to carry her into school which obviously brought attention to her, my grandson her brother went to same school, he eventually stopped talking to her, and still does not talk to her to this day, which upsets me a lot, he is 18 yes, I did try for years to get my daughter to try and sort this out but to no avail, apart from that my beautiful granddaughter who I love deeply, has no life as I see it, but then I don't have her conditions, she does go to college but speaks very rarely to anyone, she was the same as a child only communicating fully and very well with my daughter and myself, would not talk to any other family members, she would have terrible temper outbursts, and refuse to reason at all, she does not display those outbursts any longer, instead stays in her room, she will only go out with my daughter if she gets something for going clothes etc, she is up all night and sleeps most of the day, I have asked her why she's not sleeping she says she does not know, I have been worried for a long time over this, and I called her at 3pm the other morning to see why she was up, to cut a long story short she wants me to make Dr. Appt: and take her as she will not speak for herself, she never has been offered any form of help or treatment, so apart from taking her to drs. Don't know where to go from here, sorry about length of post but been building up for years, she is very intelligent and so beautiful but no self esteem and it breaks my heart to do nothing, thanks. Angse

[corriefan]

You could try the The National Autistic Society to see if they can help. My 21 year old son (undiagnosed even tho I started taking him to doctors aged 3!) has been helped by this charity. actionforaspergers.org I have found that many GP's don't really understand aspergers and its best to try and find some help from an organisation that really understands the condition. Good luck.

[angse in reply to corriefan]

Thanks corriefan thanks very much for responding, yes I will use that link, thanks again for help. Angse

[Claire133]

Hi Angse

I just read your post and wanted to say I really feel for you all. Your grandaughter sounds very much like me at that ages; I have Asperger syndrome but wasn't diagnosed until I was an adult and Yes, a lot of gp's don't seem to understand and know where to signpost also. I agree with corriefan that i an excellant idea to speak with the National Autistic Society, they may have a branch in your area and are a wealth of knowledge, I have worked with them for my son who has high functioning Autism when I had to fight my local Authority for a special school.

Could I recommend also, that you get a copy of Dr Tony Attwoods book "The Complete Guide to Asperger Syndrome", it is wonderful and the Man is a genius, there is so much in the book that may helped you both. I also met Dr Attwood at his conference in London last month and if you joing some websites like Ambitious About Autism, you will have others like me to talk to on bloggs as well as finding out events, courses and conferences etc that are happening maybe near your area, these website are so useful.

In terms of your grandaughter staying in her room all the time and hardly speaking to most other people, I was the same. What helped me was having a little job on a Saturday when I was at 6th form añd colllege, there was no pressure on me to speak but very slowly at my own pace, I started to come out of my shell and confidence grew as I had responsibility from my job, us Aspies get pride from doing things well and often we have attention to detail and are perfectionists.

I am thinking that you should ask the gp for a referral to NHS SaLT (speach&language therapist) incase she has Selective Mutism like my son has, and I had when younger. Before you visit gp, go on NHS choices website, read about selective mutism and printer off info to Show gp. It stems from anxiety and she may need therapist to do workshops, it maybe the key to her low self esteem. Also I would try to get her brother on board, could they do an activity together like cinema? We often function best when 1-1, we have the desire for friends but have difficulty making and maintaining frendships, you must make sure she is not lonely as if she is, it will make everything worse.

I hope all goes well, Claire x

[Ann4Ria]

Hi Angse,

I feel for you as I also have a beautiful intelligent daughter with very similar problems. Thank you for the long post, it comforted me a lot.

My daughter has no life as I see it, just like you shared about your granddaughter. She sleeps at odd times and gets so exhausted if having to go out of her flat that I don't get her coming home any more. Her brothers try to avoid having to invite her because she needs to have a rest and lie down if visiting. Everyone has given up on her. So she is left so alone. She is so isolated and her talents are all wasted.

I hope you and your granddaughter have got some help by now.

Thank you Corriefan for the useful advice. I will try that for my daughter, too. Something has to be done at long last.

Thank you Claire 133 for your very helpful sharing of the problems you faced and have managed to overcome. It gives us hope.

Thanks and blessings

Ann4Ria

x

[angse in reply to Ann4Ria]

If you could try and talk to the family, and tell them she needs all the support she can get, my granddaughter told me for the first time that she feels different and alone, that's how much suffering they go through emotionally, we feel as people who love someone with this condition that what's normal for us is not normal for them, they think differently, I tell my granddaughter she's special and unique good luck with your daughter. Annette !!

[Ann4Ria in reply to angse]

Thank you, Angse, for your thoughtful reply and advice. I wish the rest of my family would listen to my appeals. The problem is that they have so long simply thought that their sister just wantonly lacks effort. After all, she got BSc done so well that the University gave her a stipend to do Master’s degree. How could she not be able to just shake her oddities off, it was beyond our comprehension? The brothers have taken up saying that their sister is living in a cloud cuckoo land and just should push herself out of there and start facing reality.

Sadly, I too, before I realized how closely her condition fits to Asperger's, just tried to teach her and coax her endlessly. As a child, when pushed she got horrible fits shaking herself and her hands letting out ‘chittering’ noise until she calmed down. As an adult she just looks at me saddened without really understanding what I am about.

The problem is that when I first saw how different she was from others at three years of age in the kindergarten where the teachers started accusing her of lack of effort when they couldn’t persuade her to do sports and games with other children. Her elementary school teachers contacted me regularly ad nauseum complaining about her "avoidance" techniques, when about dropping her eraser and looking absent and when about not finishing her sports tasks like skiing alone through a short forest track in the school skiing competition or not joining in with others. School was initially a constant humiliation to her. And when she rarely found a friend it most surely was one very much like herself. I have had to be constantly ready to defend and to rescue her from arbitrary accusations and displeasure of teachers. Then I couldn't ever believe, that this girl would do so well in school and in higher education! She surprised us all. She loved literature, was mighty reader and writer and loved and knew about book world and IT so much so that her employer mentioned her as a real asset... But then she fell ill and that chronic fatigue started 9 years ago.

When recently finally getting some idea of possible causes to her condition I have been able to stop trying to change her and have tried to persuade her to go to her GP to get diagnosed.

However, she has been too long in her lonely safety at her flat without anyone trying to help or rehabilitate her. I will not be able to go and rescue her forever from her piling house chores, which she just cannot organise. Being a perfectionist she takes a long time to prepare good meals, albeit irregularly, and she then rinses and piles the dishes up in the kitchen for proper washing and creates an absolute overwhelming chaos, which she is not able to clear but partly for months and months.

Thank God I did manage to teach her to organise her money matters, she now meticulously makes sure that she keeps within her budget and even saves in anticipation of another Athos scare.

I already checked on the Asperger’s charity website for assessment possibility and we are trying to get her to accept taking that route. She has difficulty getting even an appointment to her overcrowded GP, so there will not be much help from there. I hope and pray that this will take us forward.

Thank you for listening. It is a great relief to be able to speak of this enormous burden on my heart. Sorry for it being so long.

Blessings

Ann4Ria