non-autistic family members adjusting to newly diagnosed adult family member

HI,

My sister was diagnosed with autism just last year in her late forties. She now feels more able to express her autism and openly displays behaviours she hasn't displayed to us before her diagnosis such as stimming. Her diagnosis is  very important to her.

Our family relationships have recently become very strained recently as she has been angry and has become threatening over various family issues where she perceives she is not being treated fairly. She seems to be struggling with seeing anyone else perspective, and her insistence on her way or the high way is creating a lot of tension in the family. I also feel she has also been quite bullying towards my mother.

Any advice for anyone about how we might move forward in tackling some of the wider family issues in a way that doesn't become confrontational and where we can be respectful of each other,?And any advice on helping her understand that her way might not be the best way, or the most appropriate solution? Do we need a mediator? If so were would be find one?

And what might be the best form of communication to make the next approach to my sister? I really don't want us all to fall out.....

Thanks all,

Parents
  • Hi NAS36250, welcome and thank you for asking for ideas of how you can avoid conflict in your family while respecting everybody's needs etc. I haven't got any answers unfortunately, only my perspective as a recently diagnosed 50 year old. I can relate to what you say about your sister and I even lost it recently with both my mum and dad and I haven't done that in a long time. Something happened the other day though. I was at the home of my neighbours close friends, updating them on how my neighbour is doing, and the lady said something that made me realise something significant. I was horrified by something she said, but knowing this lady is a very caring lady, it made me think a bit harder and I realised, that not only was I judging her by my standards or by what I would have done in a similar situation, I have also been judging other people this way, and most specifically, my sister. I realised that I have been kind of, without realising it, thinking that I was the only caring person on the planet when all along, I was also doing the same things as other people. It's weird, it's not like I was judging them as such, meaning I didn't treat them any different or think any less of them or anything, more like I was kind of elevating my own sense of self or something, but not in a way that I'm better than you sort of thing, more like, different but thinking that my thinking is some how purer or something. It's very difficult to describe in words, but basically, I realised that I do have what could be described as tunnel vision, but I'm not sure how anyone could have pointed that out for me. I'm doing a lot of looking inwards (which I've always done) but with a view of how I fit into the world and I can see how I could be perceived from someone else's point of view and how I have been perceiving others. 

    I think the only way forward is with a lot of patience with the  willingness to be open to see the other person's perspective/world view, lots of open dialogue and the willingness to try and help your sister feel safe and to help her feel that she is being respected and that you want to learn to understand her as much as you want her to understand you. When I 'lost it' with my mum recently, what I was actually doing was telling her and my sister, as best I could, what life is like for me just now. Doing that has always been difficult for me and just because I've now got a diagnosis, it doesn't make it any easier, but I am finding ways of communicating with them more authentically. One thing I would like then to do more often is listen to me talk about my favourite topic of the moment. If they would listen to me and share a little bit in my excitement now and again, that goes a long way. 

    I don't know, it's hard to say but I wish you all all the best. I think it's a matter of understanding that no one particular way is the 'best' but a good way would be if you can all somehow learn to work together. If your sister feels that she is struggling to have her voice heard within the family, there are disability support groups etc who offer an advocacy service, you can even contact your local social services about this. It's a matter that can effect your sister's life significantly, so I think it's a viable option to consider. Also, it is well documented that getting a late diagnosis of autism can take a couple or more years to come to terms with it. Maybe finding out more about autism might be beneficial for all of you and will let your sister know it's as important to you as it is her. I would love it if my family would do some reading about it. I've given them some stuff but so far they haven't made any attempts to find out more. I would feel so much more valued and part of their family if they did this. It would me so much to me. 

Reply
  • Hi NAS36250, welcome and thank you for asking for ideas of how you can avoid conflict in your family while respecting everybody's needs etc. I haven't got any answers unfortunately, only my perspective as a recently diagnosed 50 year old. I can relate to what you say about your sister and I even lost it recently with both my mum and dad and I haven't done that in a long time. Something happened the other day though. I was at the home of my neighbours close friends, updating them on how my neighbour is doing, and the lady said something that made me realise something significant. I was horrified by something she said, but knowing this lady is a very caring lady, it made me think a bit harder and I realised, that not only was I judging her by my standards or by what I would have done in a similar situation, I have also been judging other people this way, and most specifically, my sister. I realised that I have been kind of, without realising it, thinking that I was the only caring person on the planet when all along, I was also doing the same things as other people. It's weird, it's not like I was judging them as such, meaning I didn't treat them any different or think any less of them or anything, more like I was kind of elevating my own sense of self or something, but not in a way that I'm better than you sort of thing, more like, different but thinking that my thinking is some how purer or something. It's very difficult to describe in words, but basically, I realised that I do have what could be described as tunnel vision, but I'm not sure how anyone could have pointed that out for me. I'm doing a lot of looking inwards (which I've always done) but with a view of how I fit into the world and I can see how I could be perceived from someone else's point of view and how I have been perceiving others. 

    I think the only way forward is with a lot of patience with the  willingness to be open to see the other person's perspective/world view, lots of open dialogue and the willingness to try and help your sister feel safe and to help her feel that she is being respected and that you want to learn to understand her as much as you want her to understand you. When I 'lost it' with my mum recently, what I was actually doing was telling her and my sister, as best I could, what life is like for me just now. Doing that has always been difficult for me and just because I've now got a diagnosis, it doesn't make it any easier, but I am finding ways of communicating with them more authentically. One thing I would like then to do more often is listen to me talk about my favourite topic of the moment. If they would listen to me and share a little bit in my excitement now and again, that goes a long way. 

    I don't know, it's hard to say but I wish you all all the best. I think it's a matter of understanding that no one particular way is the 'best' but a good way would be if you can all somehow learn to work together. If your sister feels that she is struggling to have her voice heard within the family, there are disability support groups etc who offer an advocacy service, you can even contact your local social services about this. It's a matter that can effect your sister's life significantly, so I think it's a viable option to consider. Also, it is well documented that getting a late diagnosis of autism can take a couple or more years to come to terms with it. Maybe finding out more about autism might be beneficial for all of you and will let your sister know it's as important to you as it is her. I would love it if my family would do some reading about it. I've given them some stuff but so far they haven't made any attempts to find out more. I would feel so much more valued and part of their family if they did this. It would me so much to me. 

Children
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