Desperation Station!

Hi. I’m not really sure where to start so here goes........ I am a mum of a now 16 year old son who was diagnosed ASD when he was 12 having gone through years of battles, appointments, paediatricians etc etc etc. He stopped attending school when he was 12 years having been excluded 3 times (twice from the Junior School and once from the secondary school he attended).   After further battles I managed to get him an EHCP and a place at a school with an autism resource centre which he still struggled to attend, even with some amazing support and encouragement.  Even without attending school and having massive gaps in his education he sat his maths GCSE and gained a Grade 5. He has now started an Inclusion Pathways Course at college which he was extremely keen to do and had an amazing start for the first half term, attending everyday of his course - he has a three day week, which really suited him at first but then disaster hit the half term holiday in October and he has not really attended since for any length of time - the odd half day here and there. Everyday/ every week is always going to be a better one but the time comes and he just cannot do it, cannot get up, doesn’t want to go, doesn’t like that day or that lesson. I’m just at a loss as to what to say or do to help him? The problem is there is so much more as he can become aggressive/angry/violent. All he wants to do is sit in his room by himself or just be in the house by himself.  I really don’t know what the future looks like for him and it really is making me worry not only for him but also for me and I’m not being selfish as I’m sure i can safely say that as parents we want to see our children grow up and succeed and be happy.  Unfortunately it seems that my son is intent on being depressed and alone. 

Sorry if i have rambled on but I’m getting to the end of my tether with what seems like constant battles. My son has so much potential I just can’t seem to be able to help him find his way.  Any suggestions as to where we could go from here?

Thank you for taking the time to read the above.

Parents
  • I’m getting to the end of my tether with what seems like constant battles

    I can understand why you might feel that way - I may have never been in your situation, but I put my Mum through much the same at times when I was an autistic teenager.

    I'm next going to say something which may seem trite, maybe even very insensitive at first glance, so please bear with me for the explanation - I promise that I'm not being as critical as it might seem, and I don't doubt for a moment your loving commitment to your son.

    Call a truce in the battle, and take a step or two back - you both need a breather before you collapse in an exhausted heap.

    So-called "demand avoidance" is very common for autistic people, and I have some very big problems with it myself. I have a very powerful anxiety about what I'm able to achieve, particularly when it comes to pleasing other people. and a mile-wide streak of perfectionism. If I think that there's even the slightest chance that I might fail, then I cannot face even making the attempt. That way, I at least achieve one thing - I can say "I told you so" when my prediction comes true. The more I feel under pressure to do whatever it is, the more frightening the consequences of failing seem, and just like your son, I go into a kind of lock-down. And again like your son, it hit me the hardest in my mid to late teens (I even ran away from home for a while).

    But he''s obviously an intelligent lad, able to pass GSCEs even after missing half of his lessons, so why on earth would he be so scared? That I cannot tell you - I have no idea why my head works that way, either. The logical, "mathsy" part of my brain tells me that it's completely irrational, but there's just some wiring somewhere else up there that won't let me accept it.

    The words "demand avoidance" make it sound like this is willful defiance, but it's an unfortunate choice of name, because that isn't the problem at all. When "locked-down", the bits of the brain responsible for making decisions and acting upon them ("executive functions"), just won't work the way that they're supposed to, no matter how much effort is made - in fact, the harder you try, the worse it gets. The excuses aren't intended to fool anyone else, they're a kind of psychological defense system intended to fool ourselves (everyone does that a little bit, of course, but here it's very, very exaggerated). The biggest battle that's going on very likely isn't between the two of you, but inside his own head.

    At his age, most of the adults in his life will, quite rightly, be stressing the importance of what he does now for his future. Unfortunately, for those of us with this chronic kind of anxiety, we're very likely to take this message to extremes. If we have even the tiniest fear of failure, even of just dropping from an 'A' to a 'B+' in our favourite subject, our heads can become filled with all of the worst disasters that we can imagine - even that the whole of the rest of our lives will just be one long failure. When that's all that you can imagine, the obvious conclusion is - why bother then? It can also feel like everyone else is trying to decide what we should do with our lives, even if we know that they have the best of intentions - that the only reason we do anything at all is to please everyone else and never ourselves. That may seem ironic, I know, given how selfish his current behaviour might seem; but that's how it feels inside. The wasted potential is as heartbreaking for us as it is for our parents, but it can seem like the only place we'll ever fulfil our potential is in the fantasies we indulge in while we're locked away from everyone else.

    On top of that, all of the social difficulties of autism often reach a peak at around this age. Raging hormones and the transition to adulthood are difficult enough for anyone to deal with, but when you're autistic, they can seem an impossible mountain to climb. Social groups are changing faster than you can keep up with. People's personalities keep changing as they develop their adult identity. There are a million new kinds of behaviour and communication to learn, and there's a lot of pressure to show them off to win the approval of peers. If you have any kind of difficulty reading people, this can be totally bewildering - all of the coping strategies that you worked out during childhood suddenly don't seem to work any more. Everyone else seems to be running further and further ahead, and you can't keep up - as you can guess, this only fuels any anxiety about being a failure.

    None of this is your fault, and you are not being selfish. They are just some of the many ways that autistic brains can think differently than non-autistic ones.

    For your sake, every bit as much as for his, you need to call a truce in the battle. Demand avoidance is incredibly stubborn, and you will just exhaust yourself; because the harder you try to convince him to change his ways, the harder his anxieties, irrational though they are, will jam up his thinking. This doesn't mean just throwing in the towel. Do everything you can to support the slightest improvement that he decides to make for himself, of course - and if you can coax him into seeing a therapist, all the better. But he has to feel that these are entirely his choices, and that if he fails, he is not disappointing or upsetting anyone else - even if that means the odd white-lie here and there. This will not succeed overnight, of course, and he may have a bit of catching up to do later in life. But what really has to be avoided is his current mode of life becoming a long-term habit (as happened in my early adult life).

    My sincere apologies if reading my post has upset you at all - I guess that it was probably not quite the kind of advice which you expected to receive. I really do wish only to help you to find some relief from your struggles, and to help your son's transition to adulthood to go rather smoother than mine did.

    Best wishes to both of you.

Reply
  • I’m getting to the end of my tether with what seems like constant battles

    I can understand why you might feel that way - I may have never been in your situation, but I put my Mum through much the same at times when I was an autistic teenager.

    I'm next going to say something which may seem trite, maybe even very insensitive at first glance, so please bear with me for the explanation - I promise that I'm not being as critical as it might seem, and I don't doubt for a moment your loving commitment to your son.

    Call a truce in the battle, and take a step or two back - you both need a breather before you collapse in an exhausted heap.

    So-called "demand avoidance" is very common for autistic people, and I have some very big problems with it myself. I have a very powerful anxiety about what I'm able to achieve, particularly when it comes to pleasing other people. and a mile-wide streak of perfectionism. If I think that there's even the slightest chance that I might fail, then I cannot face even making the attempt. That way, I at least achieve one thing - I can say "I told you so" when my prediction comes true. The more I feel under pressure to do whatever it is, the more frightening the consequences of failing seem, and just like your son, I go into a kind of lock-down. And again like your son, it hit me the hardest in my mid to late teens (I even ran away from home for a while).

    But he''s obviously an intelligent lad, able to pass GSCEs even after missing half of his lessons, so why on earth would he be so scared? That I cannot tell you - I have no idea why my head works that way, either. The logical, "mathsy" part of my brain tells me that it's completely irrational, but there's just some wiring somewhere else up there that won't let me accept it.

    The words "demand avoidance" make it sound like this is willful defiance, but it's an unfortunate choice of name, because that isn't the problem at all. When "locked-down", the bits of the brain responsible for making decisions and acting upon them ("executive functions"), just won't work the way that they're supposed to, no matter how much effort is made - in fact, the harder you try, the worse it gets. The excuses aren't intended to fool anyone else, they're a kind of psychological defense system intended to fool ourselves (everyone does that a little bit, of course, but here it's very, very exaggerated). The biggest battle that's going on very likely isn't between the two of you, but inside his own head.

    At his age, most of the adults in his life will, quite rightly, be stressing the importance of what he does now for his future. Unfortunately, for those of us with this chronic kind of anxiety, we're very likely to take this message to extremes. If we have even the tiniest fear of failure, even of just dropping from an 'A' to a 'B+' in our favourite subject, our heads can become filled with all of the worst disasters that we can imagine - even that the whole of the rest of our lives will just be one long failure. When that's all that you can imagine, the obvious conclusion is - why bother then? It can also feel like everyone else is trying to decide what we should do with our lives, even if we know that they have the best of intentions - that the only reason we do anything at all is to please everyone else and never ourselves. That may seem ironic, I know, given how selfish his current behaviour might seem; but that's how it feels inside. The wasted potential is as heartbreaking for us as it is for our parents, but it can seem like the only place we'll ever fulfil our potential is in the fantasies we indulge in while we're locked away from everyone else.

    On top of that, all of the social difficulties of autism often reach a peak at around this age. Raging hormones and the transition to adulthood are difficult enough for anyone to deal with, but when you're autistic, they can seem an impossible mountain to climb. Social groups are changing faster than you can keep up with. People's personalities keep changing as they develop their adult identity. There are a million new kinds of behaviour and communication to learn, and there's a lot of pressure to show them off to win the approval of peers. If you have any kind of difficulty reading people, this can be totally bewildering - all of the coping strategies that you worked out during childhood suddenly don't seem to work any more. Everyone else seems to be running further and further ahead, and you can't keep up - as you can guess, this only fuels any anxiety about being a failure.

    None of this is your fault, and you are not being selfish. They are just some of the many ways that autistic brains can think differently than non-autistic ones.

    For your sake, every bit as much as for his, you need to call a truce in the battle. Demand avoidance is incredibly stubborn, and you will just exhaust yourself; because the harder you try to convince him to change his ways, the harder his anxieties, irrational though they are, will jam up his thinking. This doesn't mean just throwing in the towel. Do everything you can to support the slightest improvement that he decides to make for himself, of course - and if you can coax him into seeing a therapist, all the better. But he has to feel that these are entirely his choices, and that if he fails, he is not disappointing or upsetting anyone else - even if that means the odd white-lie here and there. This will not succeed overnight, of course, and he may have a bit of catching up to do later in life. But what really has to be avoided is his current mode of life becoming a long-term habit (as happened in my early adult life).

    My sincere apologies if reading my post has upset you at all - I guess that it was probably not quite the kind of advice which you expected to receive. I really do wish only to help you to find some relief from your struggles, and to help your son's transition to adulthood to go rather smoother than mine did.

    Best wishes to both of you.

Children
  • Describing my childhood, to a T.

  • Thank you for your reply, I have found it extremely informative and have in actual fact reread it a couple times and probably will do again to make sure I take in every point. Your points do make sense to me, I am really struggling with where/ how/what the future will hold for him.  We do talk a lot about the fact that it is his own thoughts in his head that hold him back and I try to reassure him that the only thing I want to see for him is that he is happy with whatever he is doing but that obviously he has to do something, regardless of how long it takes and how many attempts it takes, as we all need to do something to be able to live our lives - nothing comes for free these days.

    May I ask - do you work? Live independently? Drive? I’m mainly curious as I do believe that my son could achieve all of that over time, if he wishes to do so. 

    Thank you again for your response and time.