Desperation Station!

Sam McK said:

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.

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.

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.

You're welcome - it's always nice to hear that a post has been found useful. It's getting a bit late in my life for a big turn around, and I've always known that having kids wasn't for me - the least I can do is pass on a bit of "autistic culture" to hopefully help the next generation.

As with my last post, I'll start with a big caveat... I wasn't diagnosed until I was 45. So I had nearly 30 years of adulthood with absolutely no idea what the problem was. I'd felt that there was something odd about me since primary school; but whenever I struggled to cope, it was always assumed to be just depression and anxiety, and I got some treatments for those that were either no good or even made me worse. So you do need to take what I say with a very large pinch of salt - there are many things that I would have done differently if I had known much earlier what I know now.

Easy one first. I'm unable to drive; but there's a very specific reason for that. My particular brand of autism affects my senses quite severely. The kind of distortions and hallucinations that people experience when they have a migraine are pretty much all the time for me, and vary in strength almost at random. I'm also rather averse to the idea of seriously maiming some poor innocent soul because their car was invisible to me at the time! Many autistic people drive perfectly well, some even more safely than the average non-autistic driver, I wouldn't mind betting. If there's no obvious reason that your son shouldn't drive, a few lessons will soon sort out whether there's likely to be any problem, and an autism diagnosis doesn't automatically exclude anyone from getting a licence or insurance, as far as I know.

Independent living? I've had some support along the way from housemates and occasionally the Citizens Advice people (I am pretty bad at managing money, post, etc.), but since I left home at 18 to go to University, I've always kept a roof over my head, about half and half in shared houses and on my own, and too far away from my parents to use them as a crutch. The first few years were very tough; I fell apart badly at University and flunked out, mostly because I just couldn't cope with the social side of it. However, there's a lot more help for autistic people in higher education nowadays - it was pretty much unheard of when I was there (my condition itself was unheard of in those days too!)

Employment has been a struggle. I would say roughly half of my adult life I've been working, and not at the moment. I've never had a job where I couldn't do the actual work; my problems have always been with the social side (8 hours a day is more time around chatty people than I can cope with), and exhaustion (delayed-sleep-phase insomnia doesn't really allow much more than 2-3 hour's sleep before it's time to get up and go to work again). However, the last job I had, which lasted nearly seven years, I think could have lasted if only I'd been diagnosed a few years sooner. It was a nice quiet workplace at a tech' company, so my colleagues were all fellow geeks, and my employer was very disability friendly and open to making accomodations - but I simply had no idea what kind of help to ask for until it was too late, and I'd already dug myself into a very deep hole by that time.

Do I struggle still? Yes I do.  I'll never stop being autistic, and I still have periods of demand avoidance, and sometimes burn-out because of too much time around people or my sensory issues getting overwhelming. I will probably always need support to help me to deal with anxiety and my terrible executive functioning (I could do with a Mum on hand to keep me organised!) But I deal with it a hell of a lot better now that I know exactly what I'm dealing with.

However...

All of this is only my story. Autism is so diverse in how it affects people, that there is no telling how your son might handle any of these things compared to me - treat it only as a rough guide to what kind of issues you and he need to be thinking about. Things might have worked out very differently if I'd stayed in my home town, taken a gap year before moving away to study, not met such wonderful housemates and friends, or any of a million other different things. The situations we find ourselves in make as much difference as the autistic traits that we have. Take a look around the "autistic adults" area of the forum too, where you'll read a much wider range of stories - but remember, people on support sites are those who are looking for support; those who don't require it are very under-represented, so you'll get a very skewed picture.

And one last suggestion for you. Maybe your son would also benefit from finding a site like this one where he can mix with other autistic peers if he doesn't already. It has been the best therapy that I ever had, and there are a variety of sites out there that you can lurk on for a while to check that they seem suitable. The biggest boost I ever got in my life was the realisation that  I'm "not the only one"!

Best wishes.