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Struggling with niece with autism

AliW

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

    I would like to say well done you for taking in your niece - not an easy decision at all and one that, with ASD or not, would have a huge effect on your whole family.  I'm not an expert by any means (my 15 year old daughter was very recently diagnosed with ASD after years of self harm, anxiety, no friends, depression etc), however it does sound like your niece needs some support.  It's no wonder after what she's been through and would be difficult for anyone to cope with.  I definitely think that you should read up all you can on ASD as I am only on my third book and already it's helping, as more than anything I don't feel so alone in my struggles to help my daughter - there are millions of us doing all we can and it is hugely stressful.  Unfortunately, (for me anyway) there doesn't seem to be any structured help at all out there for those diagnosed later on in life.  My daughter has visits from CAMHS, a Youth Worker, a tutor 3 times a week at home, but none of them know about autism or how to interact and get my daughter to engage or to help her interact socially.   I agree with a comment above that it would be easier for you to ask your children to learn how to cope with your niece's looming and for you to relay to them some of the information that you read about ASD so they get a little understanding of what it's like to be her. It can be a lonely place when no-one understands how you feel and you can't tell them.

    Lots of questionning about what's wrong may only confuse her too (my daughter hates constant questionning of how she is and how she feels).

    It's really good that she is happy when working and being with children as she has a purpose.  Children aren't as socially demanding as adults so she will feel more comfortable with them.  My daughter loves animals and younger children but just can't get on with kids her age and never has done.  I do think though, from what you say, that she would be fine living on her own - maybe with a little support.  People with ASD find it extremely difficult to identify and talk about their feelings with anyone.  If she won't go with you, maybe just go in and see your GP yourself in the first instance to see what they can suggest or call the NAS number.  I haven't yet but will be next week as I just need to talk to someone about how I feel.  I'm also going to find some local support groups in my area as I want and need to talk about how it affects our whole family and get tips from other parents and carers on what else we can do to help everyone involved.

    I hope everyone's responses have helped even a little bit.  Sometimes just knowing that you're not alone and talking to someone who actually understands ASD can really, really help.  Take care x

Reply

  • Hi

    I would like to say well done you for taking in your niece - not an easy decision at all and one that, with ASD or not, would have a huge effect on your whole family.  I'm not an expert by any means (my 15 year old daughter was very recently diagnosed with ASD after years of self harm, anxiety, no friends, depression etc), however it does sound like your niece needs some support.  It's no wonder after what she's been through and would be difficult for anyone to cope with.  I definitely think that you should read up all you can on ASD as I am only on my third book and already it's helping, as more than anything I don't feel so alone in my struggles to help my daughter - there are millions of us doing all we can and it is hugely stressful.  Unfortunately, (for me anyway) there doesn't seem to be any structured help at all out there for those diagnosed later on in life.  My daughter has visits from CAMHS, a Youth Worker, a tutor 3 times a week at home, but none of them know about autism or how to interact and get my daughter to engage or to help her interact socially.   I agree with a comment above that it would be easier for you to ask your children to learn how to cope with your niece's looming and for you to relay to them some of the information that you read about ASD so they get a little understanding of what it's like to be her. It can be a lonely place when no-one understands how you feel and you can't tell them.

    Lots of questionning about what's wrong may only confuse her too (my daughter hates constant questionning of how she is and how she feels).

    It's really good that she is happy when working and being with children as she has a purpose.  Children aren't as socially demanding as adults so she will feel more comfortable with them.  My daughter loves animals and younger children but just can't get on with kids her age and never has done.  I do think though, from what you say, that she would be fine living on her own - maybe with a little support.  People with ASD find it extremely difficult to identify and talk about their feelings with anyone.  If she won't go with you, maybe just go in and see your GP yourself in the first instance to see what they can suggest or call the NAS number.  I haven't yet but will be next week as I just need to talk to someone about how I feel.  I'm also going to find some local support groups in my area as I want and need to talk about how it affects our whole family and get tips from other parents and carers on what else we can do to help everyone involved.

    I hope everyone's responses have helped even a little bit.  Sometimes just knowing that you're not alone and talking to someone who actually understands ASD can really, really help.  Take care x

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