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My 18 year old Aspergers brother

Hello, new to this ! I am 20 and my younger brother is now 18, we found out he has aspergers when he stopped going to school at age 13. He now just sits in his room all day, unemployed and uninterested in anything but his computer. My mum has done so much taken years off work to try to help but he won’t change until he wants to I think. I have had to move in with my grandparents about 60 miles away as the situation is too stressful for me as I suffer from low mood and anxiety which I currently receiving treatment for. I feel my mum has given up a bit she has tried everything and now in order to keep him happy my family let him get away with murder. This is only because they love him and worry for him. Some how during my absence they’ve allowed a lock on his bedroom door so now his communication has reduced even more. They feel he is an adult now so struggle to tell him what to do as he does not listen and will do whatever he wants to do. Every day he will go out to the shop to buy food and will go downstairs to see the dog but other than that his social life is nothing. I do still find it hard to see it as on the spectrum and not just laziness and I feel bad for nagging him to do stuff because I couldn’t imagine how it feels. But he can’t carry on like this he has no GCSE’s or anything to put on a CV. Does anyone have any advice at all, or any hope that things will get better. Happy to answer anymore questions if you have any. Thanks in advance 

Replies

  • Firefly123Firefly123 Member Posts: 522 Pioneering
    Hi and welcome not an easy situation at all. I have 3 young adults with autism and yes a lot of the time they like there own space but my 17 years old and 21 year old are still at college my 24 year old is not easy to get to go out at all. I've been ill lately so he's had to help me. Your brother has spent so long it seems in his routine that is hard to break. I have always made me go out even though it was so very stressful for me and them. So was he home educated then.? It cant be easy for you I don't think just leaving him in his room actually helps him in the long run. Two of mine can't go out on their own ever and believe me I have tried.. You said he can when he wants something I would be making sure he would have to. 
  • jade_xxjade_xx Member Posts: 2 Listener
    Thank you for replying!! Even to just here there is others in similar situations is so helpful. It looks from an outsiders view that he will only do something if he wants something, it’s hard to explain as he is social when it comes to ordering at a shop and he is always out driving. But he has no friends or social life, he is a little awkward sometimes. They don’t want to push him to do anything in case it upsets him as there was a bad patch where we were almost punishing him for not going to things as we did think he was being naughty but now after diagnosis we understand. I juSt don’t know what his next step will be, and I told so much of the responsibility on my shoulders as my mum is also trying to live her own life as it has taken over so much already. 
  • Firefly123Firefly123 Member Posts: 522 Pioneering
    My oldest son is the odd one out in our house and I try to make sure he doesn't feel responsible for his siblings. So I do understand how hard it must feel to you. 
    The problem is that the spectrum is so vast and no easy answers. As I said mine are also adults but yes I do tell them what they need to do but it has to be done slowly as trying to implement big changes just makes things much worse in our cases anyway. 


  • anistyanisty Member Posts: 171 Pioneering
    Im just wondering, if he goes out driving and will order things when he wants to if you or your mum could 'plant a seed' of introducing a little weekly routine of going out to a cafe or something . Like just him and your mum together. It could be out of town so he could remain a bit anonymous if that is what he prefers and maybe you and your mum could scout out places that are quiet at certain times. Often early morning (though i appreciate that might not be him at his best!) things can be very quiet and you could have a breakfast treat every week of hot pancakes or cooked brekky (if he did agree to this i would just let him eat exactly what he wanted and just make it as relaxing as possible)

    Other quiet times can be around 3 to 4pm after the lunch time rush is over.

    Remember, his need for friends is not the same as yours. He probably prefers to be on his own. Does he connect with others via computer gaming at all?

    I wouldnt worry too much at this point about lack of friends. The main thing is to get him out of the house and into an environment which is social but doesnt pressure him to interact. Otherwise days on end will go by with him not really seeing anyone at all, then he will likely become very anxious indeed about the thought of encountering anyone outside the home.

    This is why i have suggested a cafe. He can go at a quiet time and sit away from others (with you or your mum though!) And do something which could be enjoyable (eat something yummy)

    I know it wont be easy but if you can work towards not having phones/screens out at the table that would be good. He might need it for the first few times if he finds it extremely uncomfortable to be out in public.

    Gradually, very gradually when he gets very comfortable with the routine, you can extend to busier times of day. Or you might stick to quiet times but have a 'no screen' challenge. You would need to go with him, just kind of planting seeds and gently moving him to a position of looking forward to this weekly treat.

    One false move and he will likely storm off! This comes from anxiety. As you know, he will have his own agenda and own way of doing things and any perceived threat can cause the whole thing to de rail. Stressful for all!

    If he wont even contemplate this cafe idea, maybe he wouldnt mind driving your mum somewhere where she nips out and gets a take away? Eat it in the car (if he will allow that!) It is prolonging that time with your mum. Try to pick somewhere that has a sit in option so that in future weeks you can progress to sit in.



    I know it sure isnt easy and can well imagine you are both at your wits' end. 

    Another tip, if he does agree to go out, dont pressure him into conversation. Questions are stressful and could well trigger a meltdown (storm off or withdraw) he might well sit head down throughout, look at the massive positive though as he is out in a public environment.

    Never push.  Hth and best wishes
  • anistyanisty Member Posts: 171 Pioneering
    Ps has your mum heard of these people:


    https://www.autisminitiatives.org/


    See if there is one near your mum. We use the one near us for my son and they have been amazing.  There is support out there for parents (maybe not as much now your bro is 18)

    This is a friendly place so im sure they would be happy for your mum to pop in for a chat, have a look at the place, see what they offer.

    My son pops along once each week and literally sits at their computers. But he has another autistic friend that is next to him and the pair of them get a pizza from dominos and take it along. 

    Even though they are still at the computer, they are out of the house!
  • Chloe_ScopeChloe_Scope Administrator Posts: 9,014 Scope community team
    Hi @jade_xx and a warm welcome to the community. Thank you for taking the time to share this with us and I'm sorry it has impacted the whole family.. Just wanted to check in to see how things are doing. :)
    Community Partner
    Scope
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