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Asperger Experts? - Page 2 - Carers UK Forum

Asperger Experts?

For issues specific to autism / Asperger Syndrome.
Treehugger63 wrote:Hello again & thank you for all your thoughts on this. I will follow up all the links and mull things over for a while. My son doesn't seem to be at risk, which was a concern previously, so it seems I have a bit of time on my hands to decide on how best to approach things and support him. One concern is that I am helping him to stay as he is but there are few ways in when someone won't communicate. We're in a stalemate situation.

I've come across hikikomori before as I came across an article and can remember thinking that both of my sons had that. One, however, has gone on to university and seems to be moving on generally (albeit as more of an introvert) whilst the other seems to have broken down completely. I don't know what has made the difference.

I've not contacted the Autistic Society yet but am on their forums, casting about for information in some desperation. I'll give them a call this coming week though. Plus probably join the ASperger Experts FB group too, which I'll report back on here. As with psychosis, though, most of the information I can find is heavily weighted towards the descriptive side, with little on how to help. Problems like withdrawal, lack of motivation and poor self care are referred to, of course, but then no advice or guidance given. CBT or psychotherapy are mentioned but as if there's some kind of hidden assumption that individuals will engage - a huge oversight I think when non engagement seems to be embedded in the very nature of the core problem.

Overall I suspect I'm looking for something that isn't there but I feel as though there's no alternative but to keep trying.
Our situation is slightly different to yours, Treehugger, as my son is younger and hasn't experienced any psychosis type episodes, but what happened very regularly when he was little and still happens now from time to time is that if his system gets overloaded he simply shuts down. It's almost as if someone puts his brain away for the night and there's nothing you can do, other than avoid overloading it in the first place. There is a tendency, and a very natural one, for us to assume that people should be doing certain things in order to be happy and healthy - like going out, seeing friends, working or studying and so on. I've found that my son, with his terribly overloaded system, is at his happiest - and therefore his healthiest - in his room - his domain, his area, laid out exactly as he likes it - with his Lego, his Wii U, his books and most importantly, the door shut with me the other side of it :) But I think for him that's the least stressful and easiest to cope with and therefore the most comfortable for him. So as hard as it is for you as his mum, it might be that, at the moment, particularly as it sounds like your lad has gone through a tough time for quite a long time, he might just need to sit in his cave, not engage and just let his, possibly very overloaded system recover.

I did read a very good book about sensory issues called http://www.goodreads.com/book/show/1023 ... r_Syndrome

It helped me understand how incredibly hard every single thing is for my boy to do; even standing up is more work for him than it is for most other people. I read it when he was about six and suddenly things started making sense. It was also the time I started telling people to bugger off and stop trying to force him to be 'normal', because suddenly it made sense to me that exposing him to thirty kids in a classroom meant all his energy was going into coping rather than learning and his need to carry bags of rocks around was because he needed the extra weight in order to feel his feet on the ground and so on. It might be worth reading if you haven't already (in fact your boy might even want to read it, I think having a light bulb go on and thinking 'wow, this is exactly how I feel' can be very helpful when someone is struggling).

Anyway, what I'm trying to say is that not engaging might be what he needs to do at the minute in order to recover and make sense of a world that, if he is on the autistic spectrum, will often seem complicated and difficult to manage. Having said that I know it's very hard for you as a mum to sit back and do nothing (I've never been able to do that!) but sometimes we do just need to 'let nature take its course' and trust that our kids will come back to us at some point. And do remember that you need a break and need to look after yourself and do something every now and again that has NOTHING TO DO WITH AUTISM because it can just take over your life; I fell into that trap and I'm finding it hard to get out of it again now :)
Thank you for the additional links, Sunnydisposition, & for your thoughts on this MumWhoCares. The idea of the "cave" to retreat to strongly appeals. This is something I've done myself over the years and I wonder about this as a family tendency - a protective, self nurturing thing rather than anything untoward, but something that has run to the extreme in my son's case. I am also working on some ideas around "nidotherapy" (nest therapy), to try to calm things down. Not sure what might be possible but have got to try.
Hi, at school the nurses and teachers thought my son had Asperger's too. My son attended one appointment but refused to attend others. Because my son was intelligent and appeared normal I did not take him to have a full assessment. I really , really regret it now.
He is treated now for mental health and the more antipsychotic they give me him the more retarded he gets. He is unrecognisably fat and no body listens to me when I try to tell them this is Asperger's. This is partly because psychiatric nurses and doctors are not neuropsychologist and will treat the idiosyncrasies as psychosis. My own mental health is badly affected and I feel an absent loss as my son as I knew him is not there. If they stopped and listened I could safe the nhs a lot of unnecessary money spent on keeping him in picu. The way I see it they are paying the hospital to make him unwell and keep him unwell.
They have turned my quiet, gentle self reserved boy into a violent, intrusive fat mad man.
I wish I was dead and am looking for sites that will teach me effective suicide because I do not know how long I can go on for.
Just reading this now. I do hope you have been able to get help from the right source, Monaka. It must be really difficult to watch how your son is being treated. On the other hand, it would have been difficult to get him to further appointments to be assessed if he didn't want to go.

Praying for you both.