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To not always want to take autistic sibling out?

(37 Posts)
80srockheart Mon 27-Jul-15 08:36:46

My brother is in his 30s (as am I) and is autistic but fairly high functioning.

However a combination of a lack of local support and a certain pig headedness which may or may not be his condition means he has never held down a job, doesn't really have any friends and so on.

So he stays in a dark gloomy grubby house day after day. I feel so sorry for him.

Problem is I can't do anything without feeling he should come - visits to the cinema and shopping and coffee and he always has to come.

Sometimes I want to see my friends without him!

AIBU? Bearing in mind if he doesn't go out with me he doesn't go out.

AuditAngel Mon 27-Jul-15 08:38:38

No YANBU. I think it is great that you sometimes include him as this will certainly impact on your social life when he is there.

How does he interact with your friends?

TracyBarlow Mon 27-Jul-15 08:41:59

Dog course you don't have to take him out with you. It would help him if you encouraged him to make his own friends.

I have an autistic adult brother. Going to the gym really helps him massively terms of managing his condition and also in terms of having other adult interaction. Could you encourage your brother to do something like that? My brother's PIP pays for his gym membership.

TracyBarlow Mon 27-Jul-15 08:42:30

Of, not dog grin

hellhasnofurylikeahungrywoman Mon 27-Jul-15 08:43:19

No, YANBU. It is reasonable to want to do things with your friends without his company. Do the National Autistic Society have a group in his area?

Spartans Mon 27-Jul-15 08:44:24

I think it's great that you include him. But I also think yanbu to want some time to yourself, either.

Obviously I don't know your situation or your brother, but could you always including him make him feel he doesn't have to make the effort to go out on his own. Maybe if you didn't include him so much he may, eventually, decide to get out on his own.

Pagwatch Mon 27-Jul-15 08:46:11

Of course you should not do everything with him.

Your sibling has autism and the way that manifests itself means you feel he has a sad life. You may feel guilty about it and because I'm sure you love him, you want to make his life a bit better.
Put his life is not improved by your life being restricted. It's not improved by your being less than you can be.
It's better that you have a life of your own too - you then bring the other parts of your life when you spend time with him iyswim.

I am married. I would never do every single thing with my DH or we bring nothing new to our time together.

I have this conversation with my eldest son. He is an adult leading a very active, socially full life. He misses his brother who has ASD and will always be at home. But imo he should be with him when he wants to not out of pity or guilt.
Yes ,I'm admire his desire to visit because he hates how limited his brothers life is but I don't want him to live his brother life along with him.

You are entitled to your own life. Visit, go out together but not to the exclusion of your own separate friends and experiences. It does not make anyone happy.

TheHouseOnBellSt Mon 27-Jul-15 08:46:49

YANBU.Why don't you set an amount of outings in your head and stick to that....once a week or once a fortnight...whichever suits you best...and anything else you do is yours alone.

That's plenty! Of course you feel responsible for him and it's lovely he has you...but that's enough.

HuckleberryMishMash Mon 27-Jul-15 08:47:40

YANBU.

You absolutely should have plenty of time with your friends without your brother there.

Is it you that is making you feel you ought to invite him or is it your brother, or someone else.

If it's you, you need to change your mindset. Go to the cinema/for a walk or whatever with your brother a couple of times a month.

He will never make the effort to try and form his own relationships if you hand a social life (yours) to him on a plate. In the long run it will be better for him if you can encourage him to find his only social life. Are there any interests he has where he could go along to an evening class/club of some sort?

I know everyone is different but I believe there are people with autism who manage to have a fulfilling social life by going along to specific-interest clubs.

Lastly, it is never the right thing to do to keep making yourself do something until you resent it. That won't do anyone any good. Find a happy medium where you're still spending some time with him but don't feel he is impacting on your social life so much.

dietstartstmoz Mon 27-Jul-15 08:48:44

Have you contacted the national autistic society to see if there are any groups locally that he could attend? Or does he have a hobby he could get involved in? Does he have a social worker that can help with social activities?

80srockheart Mon 27-Jul-15 09:01:31

Thank you. My brother is very much in denial about his condition - he genuinely feels it's something to be ashamed of (I think our mum and dad were unhelpful in this respect) and so he wouldn't go near anything like the society. It's taken 36 years to get to the point of diagnosis.

My friends LOVE my brother; they are really fond of him and he can be lovely and sweet but he's incapable of focusing on anything that doesn't concern or interest him so visits can be wearing and he has high levels of anxiety too.

Sometimes it's great; we went to see Jurassic World last week and he loved it (he loves dinosaurs) and it was great; other times it's more forced like when we want a girly gossip and he's there wanting to talk about vanishing planes and serial killers!

dietstartstmoz Mon 27-Jul-15 09:06:30

You sound like a lovely sister and your brother sounds like my youngest son who also has high functioning autism. Are you as a family getting help? Is your brother getting any support with understanding his condition and your parents too? It is certainly not something to be ashamed of, but we all need support when a loved one gets a diagnosis.
And no, you are not unreasonable to want to spend time with your friends, you sound like you include him all the time but he does need his own interests outside of yours. Does he work?

LokiBear Mon 27-Jul-15 09:12:34

My brother is younger than me but has Aspergers syndrome. Your post really resonates with me. Particularly the part about 'pig headedness which may or may not be a part of his condition'. I know exactly what you mean. You need to ensure that you do things for yourself. I can not understand how my brother enjoys living in a tiny, grubby flat, but he doesn't want the same things as me. His brain is wired differently. Try not to feel guilty about having a life of your own.

Rainicorn Mon 27-Jul-15 09:13:31

You sound like a lovely sister. You're entitled to time by yourself, of course you are.

The NAS run a scheme called Befriending which is a team of volunteers who take out people with ASD and help them access the community. It might be worth looking in to.

80srockheart Mon 27-Jul-15 09:19:38

Unfortunately our parents are dead and even more unfortunately in a way I know he wouldn't consider being befriended. He just won't see himself as someone who needs support, if you follow me?

LokiBear Mon 27-Jul-15 09:20:40

My brother thinks that having Aspergers makes him a superior form of being. grin People find him hard to warm to when he is telling them why their thoughts and opinions are ridiculous in comparison to his own. He is hard work but lovely in his own way. I can't change him and I can't change the way he thinks. You sound lovely and so supportive. There's nothing wrong with doing things by yourself though.

Hellion7433 Mon 27-Jul-15 09:23:39

I think invite him to stuff like Jurassic world but not to events where you will want a chat with your female friends.

80srockheart Mon 27-Jul-15 09:25:37

Mine can be a bit like that Yoki and brings up inappropriate topics of conversation (no, DBro, two 17 year old girls don't want to talk about the Yorkshire rippers victims!)

Wishful80sMontage Mon 27-Jul-15 09:27:16

Is the pressure to always invite him coming from him asking or you feeling obliged?
Would he be more up for a interest group meet up?

80srockheart Mon 27-Jul-15 09:28:48

Both I think.

As to whether he'd go for an Internet meet up, I honestly don't know - it's definitely possible!

Mrsjayy Mon 27-Jul-15 09:46:49

Tbh i think most men in their 30s would be bored rigid with girly chats smile I think you need to maybe have things you do with him and things you do with your friends its ok not to take him everywhere you have probably thought of everything but is their a hobby club that he would be interested in or something?

AbbeyRoadCrossing Mon 27-Jul-15 09:55:15

My older brother has autism too and I feel like you, although I've moved away and have mybown kids now which makes it harder.
We do things like the cinema together and coffee and cake but I wouldn't bring him out with my friends as both would be bored. So I think you need to find a balance that works for you.
And he quite likes sitting in his flat too!
He does some hobbies - looking after horses, photography, gym but all quite solo stuff. He wouldn't be interested either in befriending.
Probably not helpful but we've found the NAS to not really get it and not much use. We've used Riding for the Disabled (obviously only good if he likes horses!) and some local charities that organise things.
Don't feel bad for putting yourself first sometimes. There will be times in your life where you have to e.g. if you have to go to hospital, go on business trips, have DCs, etc.

80srockheart Mon 27-Jul-15 09:55:26

He has a couple of hobbies - boxing (against objects not people; he is very gentle really) and swims but these are obviously solitary activities.

ListObsessed Mon 27-Jul-15 10:07:19

You sound like me a few years ago. My sister has a fairly severe learning disability. I used to take her out with all the time - sometimes because I wanted to and sometimes through guilt. It's hard to be yourself when you're anxious that your sibling might do or say something embarrassing (I feel guilty even thinking that, but it's true). I've stopped doing as much with her since having children - I just don't have the patience or energy to deal with her as much now. I still see her once a week for dinner and am just starting to let myself be okay with the fact that she's not my responsibility but I do love her and will always be there for her but not to the detriment of my family or myself. A turning point was when someone said to me, "Why do you feel guilty that you have a marriage, children, job and nice home when she doesn't. If you didn't have those things, would it change anything for her?" There's a closed group on Facebook called SibNet which I've found useful just because it's illustrated that my feelings are normal.

Mrsjayy Mon 27-Jul-15 10:07:23

Thats ok if he swims on his own i dont know that much about autisim but maybe he is content to do stuff on his own terms does he say he is lonely or anything like that ?

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