what next for my 29-year-old Aspie brother by desperate sis

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Hello, I´d really appreciate any help anyone can give me on this one.....

Most of the posts on the website seem to be about children with AS but my brother is coming up 30 now and we as a family are having problems figuring out what plans to put in place for his future.
He has many positive features (very loyal, intelligent, many interests) but many problems typical of his condition too (mood swings, periods of intense depression, hatred for everyone at times, rejection of social interaction suggestions, ignoring the feeling of his family etc.)

My parents have been through hell. My brother was young at a time when AS was not recognised in the UK and a lot of the facilites for AS now in our area / education of authorities etc. are actually as a direct result of their hard work. We´ve been let down and let down and let down some more all of my brother´s life. People have said they´ll help, then don´t.

It´s been disappointment after disappointment and despite all the hard work to give him a happy, fulfilled, social, independent life (my parents have sacrificed EVERYTHING to try to achieve this) he´s back at square one now. Living at home, trying to get through a course, working one day a week and having virtually no ´life´.

We have tried employing someone to ´integrate him´ into different social situations, to be a ´friend´to go to groups with for the first time. Theoretically it´s great and he´s done so much great stuff (theatre, music, outdoor pursuits, sport, etc), but the people keep leaving. Last count he´s had 12-as an Aspie he feels like they´re personally rejecting him and now is rejecting ANY social opportunites.

I am 24 and am feeling really desperate.
My big brother has always been in my life and I love him dearly but also, he´s not my kid so I don´t have that protective, all-pervasive love for him that my parents do. I worry about them and get angry when I see how desperately unhappy they are.
They are getting old now and I don´t know how much longer they´ll be able to cope with him. My mum is bitter and angry with the world. My dad is becoming increasingly detached and disillusioned. They are tired from 30 years of fight. They cannot and will not SETTLE-that a partially happy life for my brother is enough. They want him to be ECSTATIC all the time. Out socialising and functioning like an NT-only they believe that every NT is having a life-long party and doesn´t have problems, failures and rejections like Aspies. I totally understand this and want it myself but I cannot imagine a life where my brother is actually happy.

I have found being the sister of an Aspie very difficult. Like I said, I 100% realise that it´s SO much harder for him than me, and I´d swap with him if I could. Having said that though, I´ve always been sidelined, had my achievements hushed up for fear of upsetting my brother, been made to feel guilty for being popular and doing well at school, never enjoyed anything I´ve done for myself because of the guilt of it not being my brother. I´ve simultaneously loved him and hated him all my life and the guilt of everything is engulfing.

I know that pretty soon I will have to assume responsibility for him. Up until now I´ve been trying to make myself the kind of person that could be good at caring for him in the future, by distancing myself from it in a way, moving away, travelling and building a career for myself. But it´s always looming over me. Whenever I call home, I have my mum crying and shouting at me for not ´DOING ANYTHING!´and demanding ideas that I don´t have the answers for. When I´m at home, everything is taken out on me because they can´t shout at him for fear of sparking a tantrum (anger, self-loathing, ´ I´m leaving home! self-destructive behaviour...) I have to be everything to everyone-councellor, friend, idea-maker, anger-vent, hope...etc. and I just don´t know if I can cope. During periods when I live at home, I´m made to feel guilty for wanting to do anything that´s not in the interest of my brother.

All I can picture is me going through exactly the same life as my parents - sacrificing everything, becoming increasingly bitter and angry, screwing up relationships, not actually feeling like I´m helping my brother but wanting to so desperately.
I´m a teacher and I´m trying to use that side of me to create a ´PLAN´for when it does happen. Kind of: steps towards independence...a 6 month programme...where I go through methodically and carefully each and every thing he´ll need to live independently or with a small group of like minded people (WHRE DO I FIND THEM???! !) Like personal care, social interactions, dealing with set-backs..etc. in order to put into place measures for the future. Do you think this is a good idea? Do you think he would be better with me or not?

I want to be a good sister, to understand, to stay calm, to accept my responsibility but I´m also SO SCARED. I want a life. I want a family. I don´t want to go any more crazy. I feel so overwhelmed and am already having problems coping with my own life. I want to look at it positively and with fresh eyes and see all the wonderful things about my brother having AS but at the moment all I can see is a black pit with no hope, no joy.

My mum thinks that him getting a girlfriend is the ONLY thing that will make him happy and is even thinking of going for the ´Thai bride´option. I´m not convinced and think it will only make him more unhappy but he does want someone. He´s never had a girlfriend and struggles interacting around girls but he´s so loving and would be a very caring, sensitive boyfriend. There doesn´t seem to be any opportunity to meet any girls though-the groups he goes to are predominantly male and even if there were a girl there, he wouldn´t have the confidence to do anything about it. How can I help him? Any ideas where and how would be a good idea to get him meeting women?

I´m so sorry this post has turned into a mini epic. I don´t have anyone to talk to about this and feel it so difficult to explain the guilt I feel to people who don´t have a clue about AS. You guys understand it. You´ve lived it. I´d really really appreciate any help from anyone, especially those of you with AS over 30 with any advice on how I can help him, or any other siblings / parents who have any success stories to give me a glimmer of hope.

Thanks x

It sounds like your parents want him to be NT, even going to the point of hiring friends (or mail ordering a bride ) for him. It is possible that it is best for him to live at home. Maybe he does need to seclude himself. Maybe he is capable only of taking one course at a time. Where is the dire harm in all that? Maybe if he felt more accepted, by himself and your folks, as someone with AS who cannot be changed into an NT, everyone might be a little more at peace?

Is he abusive (verbally, physically) to you or your parents at home?

Can he socialize via a computer? A lot of AS people seem to prefer/ be better at that kind of socialization than real life socialization.

I agree with Apatura. It is important for him to find an occupational niche which may be solitary. All the social integration attempts have probably done a great amount of damage to his self esteem, and it is not your parents' fault, but it was simply the wrong approach.

Instead of trying to fit him into an environment, you have to find an environment for him to fit into.

I'm glad that my parents don't want me to be one of the NT Sheeple.

Does your brother draw any income from being disabled? Is there a way to get him in a group home or other situation where he can live independently from the the family but with assistance?
It sounds like he's been set up to be a defeatist. Maybe he just doesn't want to try anymore. The mood swings aren't a symptom of AS, he may need treatment of a mood disorder.

It sounds like a horrible situation, with your parents punishing themselves and you. They should be celebrating their family. Walking on egg shells just doesn't prepare a person for growing up and learning how to contribute to society.
One thing is important for your parents and brother to know; being social isn't a key to happiness. Yes, most people date, marry, work and make friends. Those things don't make anyone happy. They are just things that people do. I have had crappy friends that made me less happy than being alone. I have been to parties and restaurants where I felt bored and lonely. I know NTs that marry the wrong person. I know people who get divorced and lose all their friends.
Being happy is being able to do the things you want to do. Your brother sounds like he needs help equating working and getting along with the "reward" of money and some fun.

Your brother is never going to be an NT. He needs to determine what is going to make HIM happy, and not what is going to make his or your parents Happy.

I would suggest having him read over the general and member boards on this site. He needs to figure out "who he is". I would not be hiring anyone or "ordering any brides", this is just never really going to work.

What are his interests? he must have some?

As for you, life has not been easy for you either. You sound like a great sister, but at 24, you have to give permission to yourself to be happy, and have your own life. Is your brother going to play a big part in that? Yes absolutely, but you should not have to be the one to hold his hand through life, putting everything into him, leaving little for yourself.

By living a hushed life, in an attempt to make your brother "feel better" you are not doing yourself any favours. We are what we are, there is not much you can do or he can do or anyone can do to change that.

Sounds like your parents are definantly pushing your brother into things he doesn't want.

I've read other Aspies on WP who say they haven't been to a party in 20 years and couldnt' be happier because they hate parties.

Others say they only like interacting online because they can withdraw when they feel like it.

Does your brother have any special interests? Can he join a club regarding his special interests?

You need to lead your own life and you should be allowed to celebrate your own successes. I'm sure your brother would be happy to hear and celebrate with you. My 7 year old Aspie says 'wow' when one of his brothers does something special. Mind you he's quick to tell them if they're being 'stupid'!

Has your brother joined WP? He might like meeting online friends. My 7 year old aspie loves WP.

Smelena

Thanks everyone for your quick replies. Much appreciated.
In reponse to a few points:

Being withdrawn- the main message seems to be that it´s OK for my brother to withdraw from all contact. If he does though, he seems to become increasingly withdrawn and depressed. At times his depression is all engulfing and it affects the things in life that he enjoys, such as books. He´ll lash out and destoy things.

internet- he does use the internet a lot but not for interacting, but only researching his (many) interests. He spends an absolute fortune printing any page that interests him and cateloguing them (he´s training to be a librarian). He´s not a member of WP because I only found it yesterday but I found a simliar website called ´Aspies for Freedom´which is really good, and I showed it to him and encouraged him to use it, but I don´t think he is. I think he´s scared of being ´dragged into´AS too much. He went to residential college for 3 years and I think it brought him down in a way because although he made some friends he internalised a lot of the things he was told about his condition. For example he´d say, ´I don´t like change, because Aspies don´t like change, therefore I don´t´when he´d had no problems in the past. Perhaps because my mum has alwys encouraged him to do all the things that everyone else has done, he doesn´t want to buy into the Aspie scene. Do you think it´s the best thing for him to do? Can people meet up through these sites? A few years ago he loads of NT friends and got on really well in certain social situation but as he´s had less and less contact with people, he´s becoming more and more against it. It´s really difficult to know WHAT he wants really because he says NO to everything at first, but then after explanations, and time and encouragement, he´ll come round and really enjoy things.

clubs and interest groups - yes, he has a real variety of interests from literature to outdoor pursuits, all of which he spends a lot of time researching. Over the years I can´t think of a single acitivyt that he´s not been involved in(camping, walking, art, music, bands, writing, archery, swimming, cookery, salsa dancing...etc.etc.etc.)He tries joining groups but it usually ends badly, with him being rejected by the group or ´going off it´inexplicably because another obsession takes over. Never does it enrich him or provide him with opportunities for the future.

´´´maybe it´s best that he stays at home´´ - the problem is that I don´think this will be viable for much longer. My parents are getting old, my dad´s ill and they´re running out of energy. This is my crisis. Do I give up my life abroad and my boyfriend and get him to come and live with me or what? I´d love to think he could meet a group of like-minded people and set up home with support, help each other out and enjoy themselves, with me and my family nearby to help and be there too. Have any of you achieved anything like this, and if so how? Where does one meet ´like-minded people´ What have other people done?

girls - where can my brother meet a girl?! he´s desperate to start a relationship but normal social situations where people meet and flirt are a terrifying mystery to him (and most NTs I would say!) the social groups that he visits are predominantly male and I don´t think he would ´make the first move´ even if there were someone he liked. He´s wound himself up about it so much now though I think he has very unrealistic views about girls and relationships from magazines and films. Any recommendations on tips I can give to him? My NT male friends usually just talk ´macho´with him in a social language that he doesn´t relate to.

America - finally, I don´t know if it´s just my perception but things seem to be SO much better for Aspie´s living in America. In the UK if you´re even a touch ´different´from the ´norm´(whatever that is!) there is such a stigma attached to you. Bullies steal confidence before you get startd, Colleges don´t help and are condescending. Supposed social worker do nothing except let you down and there seems to be little, if any, opportunity for fulfilling work. It seems that in the US companies work around the AS employee rather than the AS employee constantly feeling the need to change their behaviour. Is this correct? Do you think a life there would be a good move? My mum´s mentioned it before as when they visited they felt people to be a lot more accepting of differences.

Any practical suggestion would be so so much appreciated. Please don´t think badly of my parents. No-one in this world could love my brother more and try to do more for him. They´re not trying to force him to be NT-they just want him to be happy and it´s killing them that he´s so unhappy.

Thanks xx

I haven't read much of this thread, but: has anyone asked him what he wants? If he cannot express himself that well, have him write it out. The questions you ask him will have to be explicit, i.e., the right question will produce the right answer.

Take a look at me from the outside:
25
Failed every academic thing I've tried; last place average
Rely on mummy dearest for moral support, transport, roof and food
No friends, never had a romantic interest; never had a job
I don't "talk" to anyone other than my ma; who has a severe neurological illness of her own
I get some money from the government every fortnight

Looks distressing right?

Now take a look from inside:
4
Academia is beyond boring; don't need it (as simple as that)
I do a lot of physical stuff around the house and property (I maintain it; though I'm working on doing more)
Don't need friends, I'm happier than a pig in mud as long as I'm able to do what I enjoy, people around me just distract me
Talking is severely overrated -- no one says what they really mean (they all lie); don't need it
Money? As long as I can buy food, sleep under shelter and walk to the shops; buy some books, pay for the 'net; don't need any more

All I “need” is a better ability to be self-sustaining rather than living off the fat of kings, i.e., self-employment, able to "manage" some social interaction but not seek it out.

Why couldn't your brother live with you (if he had to), whilst still being with your partner; I know we're all different, but sleeping on the floor and having a corner for his reading materials is still a good lot compared to most of the world (I assume you have a corner to spare)?

Being withdrawn- Is his anger and depression when withdrawn because he is withdrawn, or the "reason why" he is withdrawn, like a failed social situation / relationship? It may be with encouragement and coming back out to the "real world" he is forced to forget the prior experiance and move forward rather then excessively dwelling on it. The problem is, as multiple "failures" in the "real world" compound ontop of eachother, it is going to get harder and harder to keep subjecting yourself to something that does not work!

I can really relate to this, his side and your side. Overall, I am not sure that "more socialization" really is the answer, or a bandaid to the problem.

internet- I think that he may revert to more aspie ways, because honestly, he does feel that way, but has been forced in the past to "get over it" or "not buy into it". Initally this may appear better for him, but it does not change the fact that these sorts of situations that the AS label alows him to duck, are potentially traumatising to him and do cause a great deal of stress. The idea that he does not want to connect with others with As I think is sad. it sounds like denial of who he is, that he would rather try to be as NT as he can, in an NT world. I personally have found tramendous satisfaction in being able to connect with other Aspies, and know that I am not alone, a freak, or a blight on humanity. His reluctance to talk to other AS people reminds me of when I was a teen mom, and forbidden to talk or hang out with other teen moms, because they where "slu*ty scummy girls who will drag you down, they are not like you, good girls who just made a mistake, you can "recover your life, but not if you hang out with THEM". So, I did not hang out or make friends with any. I went years experiancing a very difficult situation, with absolutely no one to talk to who could "relate" or "understand". Not to mention that we probably could have gotten along rather well and have done fun stuff, like bring our kids to parks and stuff. Not the way the average 17 year old girl without a baby wants to spend her Saturday evening! I would encourage him to make "contact". We fellow aspies are very accepting and understanding of others, and really have "been there and done that". You can't force him, but just keep suggesting it, maybe start with a book or two written by a fellow aspie. I know my son is nervous to meet other aspies, because he thinks somehow they will be "crazy" or"abnormal" or "ret*d", but this just is not true, it is more like walking into a village of people just like you, and you know what? They are actually very ineresting and a lot of fun!" AS does not make someone defective, I think he struggles with that.

clubs and interest groups I totally relate. All I can suggest is he may need a break from it all. Being rejected over and over and over again, and not knowing why is very hard. Insanity is doing the same thing over and over again expecting a different result. People with AS are typically not "insane". Why would you keep putting yourself out there when it never has worked before?

´´´maybe it´s best that he stays at home Perhaps with his library course, he will find a meaningful job and be able to make it on his own? It really sounds like he is well suited for it! Is it possible to find some sort of assistive living for him? Not a group home, more like a place that has independant living with support if you need it? That may help him transition better if it is available in your area. They usually have common areas too so that opportunities to socialize are available if he wants to. Does he collect disability? It sounds like until the whole library thing pans out, that may be an option to explore.

I would suggest online dating, not sure if these two are in the uk, but Oneandonly.com or match.com are two potential sites. The pool to find someone he is compatible with is much greater then if you just look at the local scene. I don't think the Mail Order Bride is a good idea, the last thing he needs is some stranger who is hooked up to him ONLY because it gets her a visa. I just see it as a recipie for disaster. Online you have a good shot at meeting lots of "quirky" people who share your common interests, or have face to face communication difficulties. It allows someone to get to know you, without judging you on all the non verbal "cues" you give off, what is said, is taken at face value. Usually people who then know eachother pretty well, and have a good idea as to what the person is like, will then "hook up". There is still a superficial element to first contact in the real world, but there is already more depth to the relationship then say a blind date, speed dating, or meeing someone at a bar! I only caution that he better be ready to contact over a hundred women, maybe a thousand women to find "the one", and there will be a lot of potentials that will fall off early on. Generally though, I think that a lot of women online are tired of the mind games and bull**** that mostly occures in the dating world, that your brother stands no real chance of navigating through!

America I know there is a huge UK community of aspies. many of the members here are from the UK. I don't think that america or canada or anywhere else is "better or worse" for an aspie, we all have our social challenges. My son is 12, and does not do any markedly strange or abnormal, yet he has been unable to make a single friend all year in school, because of his social skills, there is just something a little "off" with him, maybe body language does not meet up with verbal expression, or he misses body language from others, or his poor Theory of mind has him not react in a typical way. All I can say, we in N. America struggle too! I am very envious of how geographically small the UK is, the potential for Aspies to meet up is much much higher! I have moved many times in my life all over Canada, one thing I learned, it never solves your problems.

As for you, I really do NOT suggest you give up your life to take care of your brother. You have your own life to live, you deserve happyness too. I know you may feel increadibly selfish and like you have an obligation since you one the "birth lottery" but this just is not true. He may need help from time to time, but you should not be his "caregiver". You need to find solutions that will work for him to live as happy and independant a life as possible that don't require you to give up your persuit of happyness!

I would suggest low doses of anti-depressants (SSRIs only) for depression.

I'm the one who hasn't been to a party in 20 years and am glad of it!

Meeting people: I always met people through my interests without trying. It is the trying too hard and lack of confidence that turns people off. I met my husband through volunteering to work with mentally handicapped people and that was before I knew I had AS. I also have hobbies that put me in contact with people who are not so judgmental. I like to explore caves.

Libriarian seems like a good profession for an aspie.

Yes, I think the US is probably a better place for aspies as there are many places here to live and each place has a different view about accepting strange people. Big cities like New York have niches for all types of people. You can also hole up in an extremely remote place and make your living on the Net. We have more of a "mind your own business" attitude and many of us loathe groupthink.

This may seem rude, crude and tattooed.

I would certainly try the anti depresant route, in my case a mood stablilizer. Touch or two of Bipolar with mine and a couple other freinds, some of which I wouldn't trade for all the tea in China. It isn't always an easy route, so expect some trouble, doesn't always work on the first try. There is only one person that will know the right feel for this part. But finaly after an 11 year grasp at one that hit it and whacked it good and finding this group, man life is gooood!! Notice it hasn't improved my spelling.

There is such a thing as the school of hard knocks, seems he's already met that one. Don't like to think there is, but ask any older aspie and I see a couple of us here. I see a lot of concern in this room and that's good. But!! You can't be everywhere at everytime. To allow the skills to be able to think through things, figure them out, is important. Very often uncomfortable at times, it's just the way it is. So... making excuses why something can't be done, to me is unhealthy for anyone. Where there is a will, there is a way. There is only one person that really knows whats going on and he isn't here and he is sure old enough if he thinks it's needed. It just might not be his time for the need, I don't know. Perhaps going face to face and say something like, Guess what your time here is nearly up, you've got to make a plan and this is why. See what he might come up with and work with him where you can, but ultimtly it is always up to us, like it or not.

Hope I wasn't being too Aspie and missing something that's more important then what I saw or I missed and I miss a lot sometimes. I think it's very cool that you're concerned at all.

Now I remember it was you SeriousGirl! Good on you!

I know you said your brother is reluctant to attend aspie or autie events, but this one seems to be a rather big deal in the Uk, it may be worth checking out! I know I would go in a minute if I was in Europe!

http://www.autscape.org/index.html

just wanted to say a big thank you to everyone for all your amazing advice.I´m going tçhome next week to see my brother and can´t wait. I´m going to try and encourage him again to get into WP becasue there are so many supportive, caring, funny and interesting people. Thanks for you help. Don´t feel so lonely now.

what about looking into an assisted living program ?......