Struggling with niece with autism

Dear all

I'm new here and was after a bit of advice. My niece (who is 20) has been living with us for the last 6 months and we are finding it difficult. Her mum died 2 years ago now and there is no Dad around. Her step-dad couldn't manage financially any more so we took her in to give her an opportunity of a new life with us. She was diagnosed with autism when she was 6 but she thinks she has grown out of it because it was (according to her) only because she had issues with eye contact. Spending more and more time with her it is abundantly clear that the issues she has are much more far reaching. 

Since moving in with us she has managed to find herself (with support) a job and has passed her driving test. She is perfectly capable of going shopping and cooking for herself, although I usually do the cooking as she has no understanding whatsover about healthy eating (nothing to do with her autism - more her upbringing). We have two other children who are younger and clearly this has presented the same problems as introducing another member of the family would in any other situation. 

However, we are struggling with a few things and I was wondering if anyone had any good advice. The first thing we need help with is the fact that she looms alot. Just stands there not saying anything. Why is this? I never know what to do when she is doing this - not sure if she wants to chat about something. She has always done it but she is now doing it to our daughter when she is out at the local sports club - this is really causing problems as our daughter finds it really hard to cope with and very difficult. Our niece doesn't pick up on her unease and just stands there. Is there anything that we can do to help her not do this to people? 

The second thing is that her social interactions with other adults are very very difficult. Socially, she really struggles. She wants to make friends but can't and when she does get friends she rarely keeps them. In what ways can we help to support her in her social skills. How do we encourage her to engage in social activities? She is more than happy when she is working or helping with children but unless she starts to find some friends she will always be entirely dependent on us - which is a daunting thought to say the least. 

The last thing is about supporting her in her bereavement. She will not discuss her feelings (her mother died very suddenly and unexpectedly and I don't think breaking the news to her was handled very well at all). From talking to her, I am convinced that she cannot identify how she is feeling about her mum passing away but she does show signs of strain - overeating, eating in secret and needing far more sleep than is necessary. However, we can never get anywhere at all with her on this issue. She always says she is fine and I think she believes that and is very confused when I say that I don't think she is fine but we never get any further. 

I'm really sorry if this sounds uninformed or selfish. We have taken on far more than we realised and now that the honeymoon period is over, we are finding her living with us more than a bit stressful and it really is impacting on our children as well. Seeing the way she is, there is no way that she will cope with living independently any time soon and I think that the realisation that we will be responsible for her for the rest of our lives is sinking in. 


Thanks

Parents
  • Hi, big changes for all concerned over the last 6 months.  Your neice may "loom" as you put it because she doesn't know what else to do, conversation etc may be difficult for her.  It's likely from the sound of it that she doesn't realise about people needing personal space.  Verbal + non-verbal communication will be issues for her to some degree.  Have you been able to spend some time getting up to speed about autism + how it affects her personally?  If you can, it's something that should be done.  This will help you in understanding her + also help the rest of the family to understand her better as well.   There's loads of info via the home pg + the posts so have a look around.  Taking it in in "bite size chunks" is best.  There's a lot to learn.   You should contact CAB or Welfare rights (council offices) to see about claiming benefits for her, if she isn't getting any or only some.  It is difficult if she thinks she isn't autistic.  Perhaps she doesn't want to be  or genuinely believes, thru a lack of insight that she isn't.  I would also contact social services to see what Adult services they have on offer.  For example she may be eligible for a support worker supplied by an approved agency who could go places with her or help in a number of ways.  Whilst she may be unable to live totally independently, she may be able to live in her own place with a level of support by an agency.  Perhaps she needs another needs assessment via social services?  Also you could claim carer's allowance.  Just a few idea which I hope might help a bit. Smile

Reply
  • Hi, big changes for all concerned over the last 6 months.  Your neice may "loom" as you put it because she doesn't know what else to do, conversation etc may be difficult for her.  It's likely from the sound of it that she doesn't realise about people needing personal space.  Verbal + non-verbal communication will be issues for her to some degree.  Have you been able to spend some time getting up to speed about autism + how it affects her personally?  If you can, it's something that should be done.  This will help you in understanding her + also help the rest of the family to understand her better as well.   There's loads of info via the home pg + the posts so have a look around.  Taking it in in "bite size chunks" is best.  There's a lot to learn.   You should contact CAB or Welfare rights (council offices) to see about claiming benefits for her, if she isn't getting any or only some.  It is difficult if she thinks she isn't autistic.  Perhaps she doesn't want to be  or genuinely believes, thru a lack of insight that she isn't.  I would also contact social services to see what Adult services they have on offer.  For example she may be eligible for a support worker supplied by an approved agency who could go places with her or help in a number of ways.  Whilst she may be unable to live totally independently, she may be able to live in her own place with a level of support by an agency.  Perhaps she needs another needs assessment via social services?  Also you could claim carer's allowance.  Just a few idea which I hope might help a bit. Smile

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