A diagnosis at last

[DAS999]

My girlfriend (early 20?s) has been diagnosed as having Asperger?s. I am happy she has been diagnosed but where do I go from hear? The problems are still there. She still has outbursts and bites. Last Tuesday was a very bad day. She spent 4 hours curled up on the floor with her hands over her ears screaming and humming. Every time I went near her I got bitten or hit. It took my friend (who works with children with similar problems) 2 hours to get her to even move. She did not talk till the following day but would only talk to my friend through symbols and signs. Luckily it happened at home this time and not when we were out. She still has no common sense and will do things like get in to the shower without taking her socks off! Communication is the hardest thing for her. Where can I get help and support from now I have a diagnosis?

What does the diagnosis mean? I am having trouble understanding Asperger's and how it effects her.

Any help or advice will be appreciated.

[nellie]

It's good to hear your girlfriend has got a diagnosis. Your girlfriend is still the same person she was before the diagnosis, although support is very difficult to get, it does make it easier.

 

She can claim DLA. Find information here http://www.asd-forum.org.uk/forum/index.php?showtopic=455

and here

http://www.asd-forum.org.uk/forum/index.php?showtopic=119

and a free DLA guide here

http://www.bhas.org.uk/

 

There's lots of useful information here.

Adult Provision ? Forward Thinking., Post 16 Provision.

http://www.asd-forum.org.uk/forum/index.ph...t=0entry17139

look at Taking Responsibility Good Practice guidelines for services

 

That's the practical stuff, you will also have all the emotional fall out that a diagnosis usually brings. Take your time, it often feels a relief at first but it can often hit you later. This forum is a great place for support, you are not alone.

 

Well done, you seem to be doing a brilliant job.

 

Nellie <'> <'>

[Zemanski]

Tony attwood's book - aspergers syndrome, a practical guide for parents and professionals has some really sound information and ideas as a starter

 

there are lots of good books in the resources section

 

Zemanski

[Blue-Kat]

hi DAS999

 

you and GF might want to consider getting a care package from Social Services.

 

It may be possible to Direct Payments so that your GF can use the money to employ a personal assistant to help ( in whatever way suits you both ). Also ask for an assessment of your needs as a carer.

 

best wishes

-

Katya

[streamdreams]

She spent 4 hours curled up on the floor with her hands over her ears screaming and humming. Every time I went near her I got bitten or hit. It took my friend (who works with children with similar problems) 2 hours to get her to even move. She did not talk till the following day but would only talk to my friend through symbols and signs.

 

This is classic AS distress, what the Americans call melt down. Whilst I am not as Dr. I have been there. The key, as hard as it may seem, is to leave her alone just so long as she is not harming her self or breaking up the place.

 

This level of distress requires help. I don?t know the British system very well, but my bet is the best place to start to get help is with the Doctors that gave her the dx. They need to know about these bad days, especially the physical manifestations i.e. the biting. As you say it?s a good this happened at home, but it might not and other people may be less inclined to accept a �physical assault�.

 

A DX in adults can make things worse, it did in my case, many people with AS refuse to believe that any that anything wrong with them and it?s every one else fault, others just refuse to think about it, either way its denial. Then when the DX come through, there is no escape and it all comes out. AS adults, especial those diagnosed as adults, can suffer from a multitude of secondary problems depending on their personal circumstances and experiences. These can range fro a crash in self esteem, chronic guilt, depression, anxiety and even post traumatic stress.

 

I wish you all the best

 

J

[streamdreams]

The is a new book "Coming Out Asperger: Diagnosis, Disclosure and Self-confidence" dure to be relased on Nov 1 by Jessica Kingsley Publishers that looks very promiceng.

 

Synopsis

"Coming Out Asperger" explores the complexity of diagnosis for Asperger Syndrome, the drawbacks and benefits of disclosing a diagnosis of a "hidden disability," and how this impinges on self-esteem. The contributors include some of the best-known and most exciting writers in the field of Asperger Syndrome (AS) today, and include individuals on the autism spectrum, parents and professionals. The broad range of the chapters, which draw on anecdotal, professional and research-based evidence, make this book a comprehensive and highly original consideration of the implications of an AS diagnosis.The ever-difficult question of who to tell and when once a diagnosis has been confirmed is discussed in great depth. Liane Holliday Willey and Stephen Shore examine the dynamics of disclosure, its risks and the possible effect on self-confidence. Jacqui Jackson looks at how a diagnosis impacts upon family life. Tony Attwood provides a clinician's view of diagnosing adults, and Lynne Moxon, Wendy Lawson, Dora Georgiou and Jane Meyerding discuss adult issues surrounding disclosure, including how to deal with relationships and sexuality, and disclosure in the workplace, as well as social and disability issues.A unique and fascinating insight into the important issue of diagnosis disclosure, this book is an essential guide for people with AS, parents, teachers, professionals and all those who have ever felt confused about revealing a personal issue.

[ceecee]

Streamindreams I think some people with aspergers are unaware how they come across to other people and the things they do.

Edited December 3, 2005 by ceecee

[streamdreams]

Streamindreams

I believe my bother to have aspergers but he is in complete denial.He cannot see the things he does claims he doesn't do them, isn't like tha, it isn't him, I'm making it up.Like you say he sees the problem as being  everbody else rather than him.He feels everone is nasty to him, when in fact it is often where he has misunderstood.He says he knows himself but he is completely unaware of the communication, social difficultie,emotional, poor memory,clumsy etc.The only thing he is aware of is his eye contact but he says its because he wears glasses!He is kind of aware he has obsessions but he says their not they are just interests.I just don't mention it any more but it's hard because what he does often has a really bad and upsetting impact on me!Oh well I keep on going... :

You have my sympathy. <'>

 

The best things about My DX, months down the line, is that it prevents arguments. First I can pridict when I am likely to have problems, (so can my wife), I now know to voice my dificultes before and as they arise, but esentualy before they over come me. When when I embaris her she calmly tels me with out it becomingan explosion, because she KNOWS I am inocent.

 

We are winning

 

we have come along way from the night she said "your not human, your autistic"

 

She meant NT

 

 

 

J

Edited October 25, 2005 by streamdreams

[DAS999]

Thank you all so so much for your help and advice. I guess these are things I am going to have to look in to. I love her to bits and I will never never leave her. I will stay in contact with the site and who knows I may even beable to offer advice to other members when I have some more knowledge.

 

Thanks again.

 

<'>

[ceecee]

Streamindreams

 

Just caught up with your reply to me apologies.!!!The only thing I would say is at least your aware of how you can be.You are not in denial.I am aware of how I can be I have mild aspergers.I cant always stop myself from doing it though!!!

Edited December 3, 2005 by ceecee

[mum22boys]

Hi and welcome,

 

Not sure if you saw it but there was an adult on 'This Morning' with Aspergers (think it was on tuesday). He has written a book which I think is called 'Survival statergies for people on the Autistic Spectrum' The info was on the This Morning website this week so I expect it is still there. Not sure if the book will help or not .

Also agree with getting the Tony Attwood book - it is invaluable.