oxgirl

I used to get like this a lot when I was younger, raging and feeling out-of-control like I just couldn't get a hold of myself and control myself. It would get so bad, I'd smash things and hurt myself and I didn't even know really how it had started or come about but seemed to always stem from some sort of frustration or feeling of lack of control or inability to change something or express myself which led to uncontrollable rage. You don't say how old you are, but with me it certainly got a lot better as I got older. I think you just learn to get a hold of yourself more as you get older and mature. What I found did really help as I got older was that I started to recognise what would set me off and I could learn to stop before I got past the point of no return. For instance, I am obsessed when it comes to hovering, once I start the job I have to complete the task in a particular order and if I should be interrupted or unable to complete the routine, I just could not cope. Once the hoover actually broke down when I was halfway through my routine. I couldn't cope, I didn't know how to cope and ended up having the most enormous meltdown and injuring myself quite badly. I went on for hours and just didn't know how to stop. Now I'm much better at walking away before I get to the point when I know I won't be able to come back and it's just something you have to learn by experience and it does make life an awful lost easier and less stressful when you do learn it. ~ Mel ~

Good news, Jeanne. Hope the good progress continues. ~ Mel ~

Could be that he's just remembering those unhappy days, Jeanne and doesn't know how else to express it other than saying he doesn't want it. Maybe it's his way of saying he didn't like it or he wished it had been different but hasn't the vocabulary to say it that way so can only say it in his own words. Or maybe he worries that he will have to go back to school one day and needs reassuring that he won't ever have to go there again. ~ Mel ~

Hi jan, you've obviously been through an extremely traumatic experience with your son fighting for his life. I think you both need some time to recover from the effects that that has bound to have had upon you both. I personally wouldn't go rushing in with your discussion about possible Asperger's at the moment, give it a bit of time. Concentrate on getting YOUR strength back and also getting him back to fitness. When he is as well as can be expected, then would be a good time to sit quietly with him and talk about your concerns and what you think he needs to do to help himself and the future. You say he spends most of his time in his room. Is he on jobseekers allowance or is he actually looking for work? Could you encourage him to help out in a charity shop for some hours a week to get him out of the house. At the end of the day, it is your house, and presumably you don't want him dossing about indoors all day without contributing anything. You don't say if you yourself work or get some respite for yourself, because it is a strain having a grown up child living with you. It could be good maybe to set some ground rules, in that he does at least help with cleaning the house or shopping or comes out for walks or something, rather than just allowing him to sit in his room all day, which obviously isn't healthy for anyone, as you well know. Does he go out with his girlfriend at all and where does he get the alcohol from or the money for it? Good luck with it. ~ Mel ~

Great news, KezT, well done you! ~ Mel ~

I don't want to see swearing on here, no. Keep your foul mouth to yourself, is what I think. ~ Mel ~

Great news, Paula, that your lad is doing so well, a lot of which is down to your hard work so you should be proud. My lad also voted. He wasn't sure at first, but I encouraged him to be part of it even if he didn't have strong views and I'm proud that he did it. ~ Mel ~

Great news, di30 and well done. ~ Mel ~

Hi penny23465, sorry you've had such a tough time with your daughter for all these years. I can't help with what to expect at the assessment, I'm afraid, as the assessment for my son was when he was 4 years old, so probably very different from an adult assessment. He is 22 now and it has been a tough road, even with a dx. I wish you both well with the appointment and hope it brings all the answers and help that you both need. ~ Mel ~

Reading back through my son's school annual review reports and statement reports I would not recognise him as the person he is today. He has none of the traits that he had as a child, but I guess he has different problems, adults problems with fitting into the adult world. I don't think he would get a dx now, would rather just be seen as shy and withdrawn. He is so much more aware of himself and his behaviour and how they appear to others and understands so much more of the world and is more aware of others, that I guess he has just learnt to 'cope' better in a lot of ways. He is still autistic but just presents differently I think. Interesting. ~ Mel ~

Hi pinebunny, sorry to hear about your daughter's troubles. My son is 20 and in a similar position, in that he dropped out of college and found it very anxiety-inducing looking for work and couldn't face going back to college because of the social aspects associated with it. At the moment we are quite stuck also. A positive is that my son does help out in a charity shop regularly now. It has been good for confidence-building but is not a long-term plan and we're unsure how to move on from this now. Would your daughter consider volunteering, as it is a lot less pressure and a good way to establish a routine and get out and about mixing with people, or at least it's a start? All the best to you both. ~ Mel ~

If school are on board it should be sorted fairly quickly for you, hopefully. Fingers crossed. ~ Mel ~

Hi Kez, is it possible to speak to the driver and get him to tell the LEA that he can't cope with the behaviouir of the students? Would the driver cooperate do you think? ~ Mel ~

Hi Abi, and welcome. Have you spoken to your doctor about changing the medication dose before giving up on it completely? It could be that the dosage just needs adjusting. I would def go back to your GP to discuss alternatives first. Other than that, the key to dealing with the behaviours you're describing is consistency. You need to come up with a plan of action that will work with your particular child, i.e. what does he really love, what could you use as an incentive for good behaviour or take away if behaviour is unacceptable. Once you have worked out what you can use, you need to be very consistent and don't give in no matter what. If you have agreed that such and such will be removed if behaviour is bad, then you have to follow through and not give in even if the behaviour gets worse. If he sees that behaving worse makes you give in, he will continue to behave badly to make you crack. Once he understands that you won't give in, his behaviour will improve, but his behaviour could, unfortunately, get worse before it gets better; ride out the storm and stick to your guns and it will start to work. I would sit down with him and draw out a chart showing what will happen if he behaves badly and what will happen if he behaves well so that he understands before you start. He is still quite young and it is very important that you get his behaviour under control before he becomes too big and possibly aggressive for you to handle so now is a good time to start. Good luck. ~ Mel ~

So sorry to hear about Glen's deterioration, Jeanne. I really hope the hospital can get to the bottom of the underlying causes of Glen's problems and come up with a solution to make him feel better and happier. Very worrying and stressful time for you all. Sending hugs. <'> ~ Mel ~

Sounds positive, good luck with it. ~ Mel ~

Hi di30. We waited nearly a year for a medical assessment for my son, who is 21. We had the assessment but found it hard to explain face to face the difficulties, although we thought we got across most of the issues. Following the assessment he was awarded zero points and told he would not be eligible for ESA and should go to Jobseekers. I was phoned by one of the advisors who said if I wrote some evidence of how he was affected day to day we might be able to get the amount of points he would need to be eligible and he said we'd have two weeks to do it. I didn't bother for a week because I thought it would make no difference but in the end I did write four pages, giving examples and setting out issues based on headings that he'd suggested. We then got a letter telling us he had been unsuccessful and that we had been asked to provide further evidence but that we had not submitted any! I phoned AGAIN telling them about the letter I had sent and they said the advisor had given me the wrong address to send it to so it had gone to the wrong place (*sigh*). Anyway, cutting a very long story short, the advisor in question rang me again to say he had located the letter and it had elevated my son from zero points up to 18, which meant he was eligible for ESA. So, in short, evidence can be in the form of a letter written by yourself, as the parent, setting out exactly how your son's AS affects his day-to-day life. Give examples of things he finds hard and go into lots of detail and it should help with the assessment. Good luck. ~ Mel ~

Hi Carrera74, sorry things are not great at the moment. Haven't got time to reply in-depth right now, but wanted to offer a bit of support anyway. I'll reply fully later when I've got a bit more time. Chin up. ~ Mel ~

Hi Dandy, it's hard to generalise, as, obviously all people with AS are different, but generally I'd say it would be quite anxiety inducing for this lad to be spontaneous and step out of his routines. That's not to say it is impossible, just that it might cause anxiety. I wouldn't expect him to react very well to sudden or unexpected changes but there's no reason why you couldn't suggest a time in the near future to do something for the first time. I would give him plenty of notice to work towards a suggestion of doing something different and not spring it on him at short notice. Maybe if he had a date in his diary that he could work towards it would lessen the stress and then if it went well it could become a routine in itself, say, once a month or something. Good luck with it. ~ Mel ~

Hi, just wondering if anyone has been signed up for the Maximus scheme through the Jobcentre? My lad is on ESA and they want to put him on to Maximus. He would be signed up for it for two years and would need to go up there every month. I'm worried that it might be too stressful for him and just wondered if anyone had experience of it. Ta. ~ Mel ~

Great news, Mihaela. Hope it goes really well for you. ~ Mel ~

This is a problem for me too. I often lie awake in the middle of the night fretting about things that I did or said ten or twenty years ago or things that people said to me. I think it is just that it is impossible to go back to rectify these mistakes that makes me focus on them. If I could resolve the issues I wouldn't have to fret about them but I can't change what happened so I just go over and over tings in my head with no solution in sight and am unable to move on from them. I try to tell myself that, yes, that did happen, but it is not happening now and I should learn from past mistakes and will not make them again, but sometimes this doesn't help. ~ Mel ~

Hi di30 and welcome back. You can apply on-line for ESA and will need to send a certificate from your son's doctor stating that he is unfit for work. Initially we asked our doctor to just write a letter confirming his dx, which we sent. When the application is processed you will have to fill in a medical questionnaire for your son and he will be asked to attend an interview. The waiting time for this is very long but he will be paid up until he gets his assessment appointment. During this period you will have to send three-monthly certificates from your doctor, but we just phoned up our surgery and asked them to make one for us to send. Once your son has had his assessment interview, they will decide whether he is eligible for ESA or not and will then take it from there. He will be paid throughout this period but it can take up to a year to complete the whole process. Good luck with it. ~ Mel ~

Hi Kazjam, I hope you had a nice coffee with your son today. It sounds like you really need a break from it all, you have been carrying all of this on your own and trying your best to do right by your son and it is exhausting. Could you sit down with your son and really spell it out to him? Make clear to him that you love him and will always be there for him, but that you cannot put up with the way that he treats you and you won't allow it anymore. You could continue to meet regularly in public, but as soon as he starts to try and manipulate or bully you, walk away and refuse to allow him to make you do things you don't want to. Is it possible to move a little further away from the situation? Not too far, but just enough to give yourself some distance from your mother? Make clear to your son that how he treats you is not acceptable and that you won't allow it anymore and that if he wants to continue to see you he must change his behaviour. Hope you are feeling a bit better. ~ Mel ~

How does it work then? We're nearly 200 miles from York! ~ Mel ~