Where do we go from here at the age of 20?

I’m mum to a 20 yr old female who was diagnosed with Aspergers when she was 8. Life has always been challenging, yet as a family we’ve managed to cope-until now! I’m sure the covid situation is a contributing factor but many of the issues were there before but I put on a brave face & muddled on through, yet the reality is now I really cannot cope, but don’t know where to turn.  Many issues appear to be pretty standard it would seem-she rarely leaves her room, games all day, resists showering, doesn’t tidy up after herself, over eats, refuses to help with small tasks around the house generally treating the place like a hotel. She can be sociable & chatty towards us one minute then angry & aggressive the next, wanting everything on her terms. She knows the basic house rules but is non compliant and basically does whatever she wants! She was supported throughout her school years with a statement/EHCP & scraped through her A levels and secured herself a place at our local university where her effort is minimal, often needing to re submit work that falls below the required pass mark. She had been in receipt of P.I.P, that followed on from her childhood award of DLA but that was recently ‘taken away’ from her on the basis that she attends university & therefore can manage the rest of her life! I have of course appealed the decision as this is not so!  On a personal level I feel like I’m drowning!! All the support we had in place 2 years ago has been removed bit by bit and I may appear selfish when I say that I really cannot face the prospect of this situation carrying on indefinitely. Her last EHCP stated that she would ‘require substantial support to be able to live independently’ and yet there appears to be little out there that can help me, as I am that substantial support-the unsupported, unpaid carer!  I’m by no means a bad mother, I have supported her & fought for her rights throughout her school years but I’ve reached the point now where I feel I could just turn her out on the street. Even though I feel this way, the prospect of doing so actually makes me cry...... 

Parents
  • It sounds very tough. Tough on you and the current situation may well be tough on your daughter too.

    I think the current covid 'climate' doesn't help. I am setting aside all my hopes and dreams (some of them as simple as just having someone to hug) aside until things finally get back to some level of predictability. The current time, while feeling very samey is also unpredictable. The change is difficult to understand and not knowing when our own normal may return is unpredictable and unsettling.

    However, there is reason for hope. What is happening is a period of uncertainty and, with patience and strength, we can cope with the difficulties of the now and see whether the future offers a better climate.

    When I was reading and then reflecting on your post, I wondered whether your daughter hasn't found her vocation/calling. She's at university but is barely performing.

    Some of us with elements of pathological demand avoidance can be very motivated in certain areas. For your daughter, gaming does provide motivation. (Possibly a touch too much for comfort. I can only imagine how tough it might be to wean someone off gaming if it is one of their few 'safe places'.) There might be other things, in addition to gaming, that motivates her but possibly she hasn't found it/those yet. Sometimes it can take significant time to find one's motivational areas.

    I'm not a gamer but I can 'binge' on certain areas. Put me in front of YouTube and I can spend 6 hours straight watching things (and then may feel either proud of what I've found out or very downcast by what I've not done that I could have been doing).

    As a growing older person, I have managed to find certain useful areas of relative obsession to spend time on in a way that is fairly useful/genuinely productive. For me, that includes history and health (I'm a former -and possibly still future- health writer).

    It could be (and yes, I may be off the mark too) that your daughter hasn't found the area that interests herself enough to pull her away from the gaming. However, there is hope that things may change in time. Possibly with support and possibly her own inertia might come into play.

    Have you noticed any signs that your daughter works more productively in certain situations?

    I ask this because I know that, on my own, motivation is tough. Yet, put me with a partner and, all of a sudden, I have a wonderful surge of energy to work with people on all sorts of projects (including some I wouldn't dare dream of doing alone).

    So I pose this question to see whether your daughter gets motivated in the presence of certain others? Has your daughter had friends that seem to have possibly indirectly helped her with motivation or initiative?

    'Treating the place like a hotel'
    It might seem like your daughter is being unbothered/uncaring/nonchalant but under the surface may be very different. I know that when I am going through hell inside, the little things I 'should be' doing start to slide. This adds to the panic inside me and yet my exterior looks calm ... ... until/unless some trigger hits, which could be a conversation. Then, chunks of the terror and panic comes out of me, the frustration coming out in a way that looks like anger.

    Her anger/aggression and wanting things her way might be her desperation to have a sense of control over her life. Is she very worried about her future? Is she worried about fitting in? Is she worried inside herself about how she's getting on with you and the family? Each of things may have accumulating fear, frustration, panic and a lack of hope and control.

    Sometimes I have treated places a bit like a hotel (without being fully aware) and that's happened when I've lost a significant piece of control of myself.

    If your daughter is told she's being negligent then this can add shame into the mix, lessen confidence further and cause her to withdraw more. It's a bit heartbreaking for all concerned if this does happen. 

    What helps to break the ice? Is there a chance to do something nice? Take a walk in nature and ask your daughter how she feels? Opening up to parents can be very difficult for some of us and sometimes it takes time. However, with patience, finding even a little bit more about what makes your daughter tick and how she feels about her life and things could be helpful and reassuring for you.

    Lots of babble and questions, so I'll stop here.

    I hope things go ok for you all. I appreciate, at least to some degree, how tough this must be.

Reply
  • It sounds very tough. Tough on you and the current situation may well be tough on your daughter too.

    I think the current covid 'climate' doesn't help. I am setting aside all my hopes and dreams (some of them as simple as just having someone to hug) aside until things finally get back to some level of predictability. The current time, while feeling very samey is also unpredictable. The change is difficult to understand and not knowing when our own normal may return is unpredictable and unsettling.

    However, there is reason for hope. What is happening is a period of uncertainty and, with patience and strength, we can cope with the difficulties of the now and see whether the future offers a better climate.

    When I was reading and then reflecting on your post, I wondered whether your daughter hasn't found her vocation/calling. She's at university but is barely performing.

    Some of us with elements of pathological demand avoidance can be very motivated in certain areas. For your daughter, gaming does provide motivation. (Possibly a touch too much for comfort. I can only imagine how tough it might be to wean someone off gaming if it is one of their few 'safe places'.) There might be other things, in addition to gaming, that motivates her but possibly she hasn't found it/those yet. Sometimes it can take significant time to find one's motivational areas.

    I'm not a gamer but I can 'binge' on certain areas. Put me in front of YouTube and I can spend 6 hours straight watching things (and then may feel either proud of what I've found out or very downcast by what I've not done that I could have been doing).

    As a growing older person, I have managed to find certain useful areas of relative obsession to spend time on in a way that is fairly useful/genuinely productive. For me, that includes history and health (I'm a former -and possibly still future- health writer).

    It could be (and yes, I may be off the mark too) that your daughter hasn't found the area that interests herself enough to pull her away from the gaming. However, there is hope that things may change in time. Possibly with support and possibly her own inertia might come into play.

    Have you noticed any signs that your daughter works more productively in certain situations?

    I ask this because I know that, on my own, motivation is tough. Yet, put me with a partner and, all of a sudden, I have a wonderful surge of energy to work with people on all sorts of projects (including some I wouldn't dare dream of doing alone).

    So I pose this question to see whether your daughter gets motivated in the presence of certain others? Has your daughter had friends that seem to have possibly indirectly helped her with motivation or initiative?

    'Treating the place like a hotel'
    It might seem like your daughter is being unbothered/uncaring/nonchalant but under the surface may be very different. I know that when I am going through hell inside, the little things I 'should be' doing start to slide. This adds to the panic inside me and yet my exterior looks calm ... ... until/unless some trigger hits, which could be a conversation. Then, chunks of the terror and panic comes out of me, the frustration coming out in a way that looks like anger.

    Her anger/aggression and wanting things her way might be her desperation to have a sense of control over her life. Is she very worried about her future? Is she worried about fitting in? Is she worried inside herself about how she's getting on with you and the family? Each of things may have accumulating fear, frustration, panic and a lack of hope and control.

    Sometimes I have treated places a bit like a hotel (without being fully aware) and that's happened when I've lost a significant piece of control of myself.

    If your daughter is told she's being negligent then this can add shame into the mix, lessen confidence further and cause her to withdraw more. It's a bit heartbreaking for all concerned if this does happen. 

    What helps to break the ice? Is there a chance to do something nice? Take a walk in nature and ask your daughter how she feels? Opening up to parents can be very difficult for some of us and sometimes it takes time. However, with patience, finding even a little bit more about what makes your daughter tick and how she feels about her life and things could be helpful and reassuring for you.

    Lots of babble and questions, so I'll stop here.

    I hope things go ok for you all. I appreciate, at least to some degree, how tough this must be.

Children
No Data