siblings

Hi Amy,

Thank you so much, its very difficult as my daughter has a 6 month old baby too, so that draws even more attention to her, my younger daughter feels just like that, I was telling her about the forum, I think she would benefit from taking a look, so i will show her later. As she has got older she has expressed her feelings to me, because Faye can say some quite hurtful things at times, with no idea that this hurts people, and Charlotte takes it to heart.

I dread it when faye wants to go out, as the few friends she has wouldn't be my choice for her, that all goes back to school, she attended a special unit, with her high awareness of 'being different' she was introduced to mainstream school toom late, so she came out of school with no girl friends. Charlotte of course doesn't want to take her with her friends as she says it doesn't feel right. Char is 16, maybe she will become a little more tolerant as she gets older,

I already feel better talking to someone who knows where we are coming from,

Thanks amy x

Hey Sarah, 

I have continued to build a life outside of my sister and her condition, and I am now in a position where I feel I can help her without it negatively impacting my life. As my other siblings have left home and my parents are too busy, I have taken the responsibility of guiding her. I want her to have a good, fulfilling life but I still face resistance from her. She does co operate sometimes but you have to be assertive to really get your own way. It is hard work but to live happily I have to know she is doing ok. I am doing this by getting her work experience with the hope she get a job at some point, and getting her to join clubs so she has an external support network. I am also contacting support groups who can help her more than her family can. Personally I am doing much better now, it is hard work but I have more independence so can escape it more often. It is important for me to have a life that she isn't involved in or I'd go crazy!

I think the most important thing for your daughter in this situation is for her to feel like you give her just as much attention as your other daughter (my parents still don't manage this, I wish they would) and for your daughter to have a fulfilling life outside of it all. Spend time with her, make her the priority because it is so easy to unconsciously concentrate on the vulnerable or struggling child. I'm not sure if you can privately message on this site, but if you need any more advice or anything feel free to ask. 

Amy

Hi Storm,

I wonder if you are still on here as your posting was sometime ago. It sounds like my house, my oldest daughter is 17, she has a baby who is nearly 6 months old, my younger daughter is 16 & it may as well be her writing what you write, she feels exactly the same. How are you getting on now?

Sarah

My older sister has Aspergers and my experience has been that, as a member of a large family, I often felt resentful that she got more attention than me. I was the quietest child, and so my main role was to support my mother and siblings. I also had a sort of role supporting my sister, however this was incredibly difficult at times. As I have grown older (I am 18 now), I have found myself in a way rejecting the role of carer after it impacted quite negatively upon my life in the past few years. While I support my sister to an extent, and try to help her to improve her career and life prospects, I do not deal with the emotional or practical side as much. Being a sibling of someone with Aspergers, I found this to be a very challanging experience and as I grow older I want to be able to experience a normal life. At the same time, I want her to have a normal life too. Its difficult though to support someone who doesn't appreciate it.

Hello to everyone who's posted here.

My sister has autism (26 yrs, I am 28) and in the last few years I've become increasingly involved with supporting her, especially given the fact that her increasingly bad psoriatic arthritis has dealt her a double blow, and which I think is linked to the stress she experiences in daily life as someone with autism.

Being an (only) sibling can be extremely tough... and while it's great that autism seems to be getting a good deal of press at the moment and awareness is improving, I still think that there is a huge amount of work to do in improving our social systems to accommodate and understand the idiosynchrasies of people on the spectrum. (I say this with no judgement - whether neurotypical/neuro-untypical we view the world in our own way and cannot help this).

So being a sibling is difficult, I have increasingly come to realise, (though like you say, sybil, I love my sister more than anything and would never be without her) and I was wondering what kind of interest there might be for the formation of a siblings group in the London area. I would love to meet other siblings of people on the spectrum, hear about their experiences and share mine.

Incidentally, I am training as a counsellor and have been fortunate to be working with a therapist who has done a lot of work with ASD. I have learnt a great deal about how best to 'be' with someone on the spectrum (saying that, my experience has only been with my sister, and I certainly do not claim to have all the answers!) - how to help minimise anxiety, be supportive with communication and creative in problem-solving. I would love to share this with others and just as much hear others' experiences. If anyone is interested, please let me know, and we can discuss it further.

One final word - I think the very fact that we are all on here talking about our lovely siblings is fantastic - they need our support just as we all need ours, and it is a bit overwhelming for me to think of how much support there is available nowadays to help people experiencing difficult times (though happy ones allowed too!). I just don't think the same was available for my mum when my sister was diagnosed...

I look forward to hearing from anyone who's interested in the group, and if you happen to know anyone not on here that might, please do ask them to come and post.

With best wishes,

Jo

There is a website dedicated to siblings of disabled adults and children which some of you may find helpful.

http://www.sibs.org.uk/

Obviously it is not geared specifically towards autism but there is lots of helpful information on there.

Hello. This is something that very much concerns me although my two boys are very young.  They are aged 4 and 3 years. My youngest has ASD, my eldest boy though does not understand, he is too young, he thinks that his brother is poorly. He often says that he wants a different brother as his behaviour appears to be naughty. It is very difficult to try and explain. I know that the relationship will change over time and my elsest boy is very loving to his brother and vice versa. It is just knowing how to explain autism and why he behaves the way he does.

I have two autistic brothers and although I helped out with their care I did not have a significant caring responsibility as my parents took on this role.

I agree with what Sybil said in that I have never talked to anyone with an autistic sibling, which is something I would have benefited from whilst I was younger and living with my siblings.

When I was at school I did not advertise the fact that my brothers where autistic out of fear people would insult them - something which I would not have been able to cope with.  However I explained it to my friends by describing their behaviours and what they liked and disliked.  Now that I am an adult I am able to be open about my brothers being autistic and their is a greater understanding of what autism is from other people.

My siblings are at the stage now where they are becoming adults and this brings with it new dilemmas such as what are they going to do and where are they going to live. I still worry sometimes about the future and what will happen when my parents are no longer around.

My youngest son is autistic and my older son (by two years) has always accepted his brother for who he is and that he is different. He explained to his friends that his brother's brain worked different to ours and that he can sometimes behave different but that he was OK. It is very difficult to explain to children what autism is but the way my son explained it to his friends seems to work and if they want to know more they come to me and I explain that a brain is like a road map, our brain has roads that go one way and Callum's brain has roads that go a different way and that no road goings the wrong way they just go to different places. Don't know if that is the best way but they have all got it so far!

Hi randomgrl

Like you I am very close to and have always been involved in the care of my brother.  He is now in his mid 60s and is severely disabled by autism.  Our parents are no longer alive and we have no other brothers and sisters, so his relationship with me has actually been the biggest constant throughout his life.

Siblings can carry quite a heavy burden, one that changes at different stages in life - coping as a child, as an adolescent, and as a young adult in a family that is 'different' and often with considerable challenges - then supporting parents as they get older and less able to cope with the needs of an autistic son or daughter (even if they're no longer the primary carers) - and then ultimately shouldering all the feeling of responsibility once your parents die.  My parents tried very hard to ensure I never felt disadvantaged as a child by our family circumstances - they were amazing and they succeeded - but I know my mum always felt guilty about the impact it's had on my life overall.

I love my brother and wouldn't be without him for the worId.  He has enriched my life in countless ways.  He is very special.  But I have often wished that I had another brother or sister to be able to talk things through with, someone else as close to my brother as I am. My husband and family are very understanding and supportive but being sole sibling can still be a lonely business at times, so I welcome this forum where hopefully some of our worries can be shared and addressed.  

I know quite a few people who have an autistic child, but I've just realised while writing this that I don't think I've ever met or spoken to anyone else whose adult brother or sister is autistic.   It would be great to hear from other siblings out there.

Thank you National Autistic Society for being there - you're doing a great job!

Hello Randomgirl.

Welcome to the community and thanks for posting.  I have attached a link which may be helpful to you. 

http://www.autism.org.uk/en-gb/living-with-autism/at-home/families-supporting-brothers-and-sisters.aspx

It may contain some information / guidance that may help. 

Hi

Despite leaving home before my brother got his diagnosis, i have always been very involved with my brother and with my mum who is his primary carer. My sister is 3 years older than my brother Robbie and until this year, she lived at home. There were times when she got very angry with him - she had her own life being played out and felt that he was getting much more attention than she was, and she went off the rails for a while. After this, though, she did a bit of growing up and started to understand him more, and nowadays she seems to have an intuitive way of knowing what is wrong with him and what is the best way of dealing with it. My other brother, who is a fair bit older than the other 2 (as am I)  deals with it by sticking his head in the sand, despite living at home for quite some years after the diagnosis!