loubeeloulou

That's exactly how I feel, like I've become more intOlerant than I was before, like I've become irritable, anxious & easily annoyed!!! It sounds just like what we are going through, he yearns to be the same, to have friends and do things but when I ask him what he wants to do he doesn't know. It's so heartbreaking isn't it? He has virtual friends, of a sort, he plays online on his play station against people and he knew some of them from primary school. He spends all his time on it, most days. It costs me a fortune buying stuff for it but he has nothing else so how can I refuse?! I guess we have to hope for more good days, more strength and patience & a break in the pattern somewhere, somehow. His old school knocked out the self esteem and beautiful happy smiling boy he was out of him, by forcing issues, treating him as naughty mentioning autism yet making no referrals then making it impossible for him to trust then, if things had been moved on faster I genuinely believe that he wouldn't be as low as he is now, or maybe I have to blame someone, I don't know, I've never formally complained as I'm not sure of my reasons for this all! I do crave normality for myself yet I can't leave him and go have a life, he is my boy. Have to hope for hope!

Thanks everyone, it's good to know I'm not living a solitary nightmare! He won't entertain any kind of schooling, even home tuition is a no go right now. His aggression and upset on citalopram was horrific, hence why he has come off it, I'm not sure how he will manage wiThout, but they don't seem to help either! He gets very upset, doesn't communicate how he feels, used to send me Facebook messages, Then I bought him a phone for Christmas so he has a direct cOntact with me when he needs to. Nobody else really seems to understand, sometimes I do lose my patience & walk away but not often. I think he is lost in his own world, deeper and deeper into the unknown, which scares me. I don't have a life. I exist in his solitude at the minute. We seem to have isolated together! I have had to reduce my hours to two days at work just to be home, I don't go anywhere at minute either. My anxiety levels are huge, never understood anxiety before now if I'm honest, now I get it! We don't attend family gatherings nor visit people, cos he won't go, so I won't leave him do we stay here! If I could just get him stable, forget education, he can access that at any age by his own choice, it's never too late is it! Maybe I just don't process it effectively, but I just want him stable so don't force anything at all mostly. I feel so sorry for him, he knows he can't do 'normal' stuff and it does upset him, I don't want normal, whatever that may be, But some semblance of standard would be nice at times. I email the clin psychologist with updates, prob more to let off steam, think she knows and it's ok, but all they ever Ask him is has he thought about hurting himself, whih he always denies, but says his life is worthless all time. I'm praying that's just attention. Some days I've been that manic I've googled emergency mental health services, Not having any clue what I would say, and frightened to death of what they might do to him, He and I are the only ones who know everything, his dad doesn't really get it all and he won't say this all in front of him either. Then I think, stop stressing, he will get stronger, fingers and toes crossed!!! X

He also doesn't bathe, cajoled into it usually every 3-4 wks, and he will keep the same clothes on during that time, I gently try to say please wash, deodorant etc, but he doesn't get the point, often he sleeps on the sofa when he can't get to sleep. He has some irritations with food, some things can't be mixed, some things he won't have at all, he has no other problems.

Hi I haven't really used this forum much, mainly due to being so bogged down by 'life' an it's associated issues, but I'm unsure where to turn next really.... My 14yo has asperger's, fiercely intelligent, big and mature for his age, is having the blackest time. he hasn't attended school since - have to think about this as time is lost on me right now - April 2010, he's had home tuition since June this year, with a useless tutor with no experience of ASD (basically she told him he was rude if he didn't say bye, constantly asking if he understood the consequences of not partaking etc etc etc) We changed from fluoxetine, which he'd been on since Feb 11 to sept 11, to citalopram, in late sept early oct, after we hit a bumpy path somewhat and fluoxetine didn't seem to be doing much. His mood was that low that he was signed off home tuition til he settled. He went on fluoxetine as he was clinically depressed and his anxiety was huge in feb this year, he told me he wanted to kill himself. He has spent much of this year in the house, we go out less and less, we see people less and less, if my other children's friends come here he will often speak to them, but often sits in his room, playing his playstation. His fave phrase is 'I'm bored' - typically. He was on 40mg of fluoxetine, but changed to 20mg of citalopram, which made him massively tired constantly, messed up his sleeping pattern upside down completely, and didn't even take the sharp edges off his down mood. Things got so bad again that he began saying his life was rotten, worthless, there was no point to it. It was decided by the psychiatrist that he should stop citalopram, which we have been clear of for a wk now, to see how he goes meds free (he takes melatonin to aid sleep only) and we have an appointment mid january with him. I have been asked by clinical psychologist, who is lovely, if i need anything, if there is anything they can do more to help, but they can't. I don't know quite what to do anymore. It's affecting my sleep, my mind, everything. All i do is worry, he sends me texts saying he hates his life, he wants the end bit of it, the rest is worthless.... I know, well, I hope I know, that if he meant any of it, he wouldn't be telling me, that he wants this, as he doesn't communicate feelings/emotions usually. It is literally breaking my heart, Im clear moments I 'hope' that this is just a teenage phase of asperger's and that things will indeed become better, as he gets more used to things (he's only been diagnosed since he was 12) but every day is a struggle really, He won't go anywhere at all, so when the bored phrase comes out we sit and talk, well, I do, usually offering ideas, but lately he gets more frustrated with my suggestions that he can't do, so loses his temper quite a bit, even at me, who is the only person who he knows is closes to and is there for everything, but I know he can't help it, then he gets upset too... so people like my mum, who say, tell him he has to snap out of it, take him different places, just don't seem to grasp it, places are full of people, people aren't great! I know folks on here have been through, and are going through similar things, but, does anyone have a magic solution? answers to silly questions; such as how long will this go on for? will it get better??!!!

CBT could help you with dealing with the anxiety that causes these feelings. I don't have ASD, but my son does, and he has lots of what I define as anxiety filled moments, he has yet to learn a system of dealing with them, but I think (as someone that suffers from anxiety and controlling tendencies) once we get into a pattern of anxiety, it is very difficult to get through it, see logically and get people to understand how it feels. Seeking some porfessional help to organise thinking, to learn how to tackle those thought processes and deal with situations calmly and clearly could really make a difference to you, I only deal with child services, so wouldn't know where to tell you to go to, if you don't already have contact with anyone about this, but starting with the GP (albeit possibly futile) requesting a referral to the relevant dept for cognitive behaviour therapy, would be a start. It's terribly difficult to understand for everyone else, especially as it's probably very difficult to explain how you feel. But getting some help/advice about it professionally may really help

I had a meeting yesterday with the proposed statement author, who seems ok I guess. Could be worse she has took my opinions on board and had researched online learning for my boy and has agreed that he should be able to have some kind of mixture of home tuition led by someone suitably experienced in aspergers and enhanced by online learning, which is what is best for him. Couldn't ask for more really! I did have to disagree with a few things such as ...'ultimately, a school placement is our long term goal...' which is I guess, la speak, but I agree in theory, although never see it happening, I've said should he ever request this or feel mentally able to do it, I'll be te first to tell them but for now, home ed paid for by the LA is what is best, dedicated to just one or two subjects, for now, to get him learning something. It isn't an ideal education, but. It's what is best for him, and that's what is best. I know one day, if he wants more he will ask for more or maybe even seek more himself. To get him happier, more mentally stable is much more important than what he is, on paper, capable of achieving but currently unable to achieve, is my goal. Couple more meetings to go, more research needed, but we are heading in the right direction, so it's positive, for once!

Thank you so much, I know I'm not alone in this, but people experience such levels of difference it's hard to find someone who knows exactly what's happening to you at that time. My biggest area of 'lack of info' came mainly from the fact I didn't have anyone to ask about stuff, he won't ever go into a schl setting, I don't believe. But I won't give up just yet I don't think. I'm going to try for home tutor change, she really is no good the one we have, and I've got him signed off sick for now. I know at yr 9, time isn't running out, but it's not far off, so just getting him something is better than nothing. I know he can access education anytime in his life, it's never too late I know. I can imagine you are immensely proud of your daughter and looking back, wonder how you managed what you did, as at times, I often wonder how on earth I get up some mornings! Some better than others, recently, dip in med levels due to change, have made things cacky! But it's not the darkest time we have had, and I'm more capable of dealing with things now though. He doesn't have any friends, which is bad, he speaks to some people occasionally on Facebk, but he hasn't had a social group of peers since yr 7, the start of, nothing since. He is mature though, and speaks to his 20yo sisters friends, sometimes, when feels like it! I think I have almost become anxious myself, and over worry about things far too much, I won't currently leave him to his own devices whilst I'm at work at the minute, almost over the top I know, but He doesn't have adequeate skills to cook for himself, etc, and his moods are often too low that I feel I can't leave him. I;m sure, one day, things will be ok. I have everything crossed for this anyway x

He doesn't go out, which I agree, isn't what I want for him. He has limited social interaction, with anyone other than his family. He hasn't attended school formal, since May 2010, full time since Jan 2010, he did two days in Jan 11, which were at a new schl, he has had home tuition, finally, from June this year, but she doesn't have adequate understanding of his needs or his personality, just throws comments such as don't you understand the consequences blah blah blah...He is very mature for a 14 yr old, very bright, can be logical, will defend arguments that happen in the house not involving him and can really justify ssensibility lots of the time for everyone else. But he sees no point to most things, which, unfortunately is the hardest thing to bear for me, his Mum, so as far as his future goes, I can't predict that, nor would be forcing him and physically dragging him (all 6ft of him compared to my 5'4 - impossible) to a placement benefit his state of mind or his education...hence my difficulties finding what is best. I think an adapted home tuition program with someone ASD qualified or experienced and understanding with the scope for him to majority of work online is the best option currently. At year 9, we don't really have much more time to waste on appeals etc, so I'm just hoping the meeting with Statement write will prove fruitful in a couple of wks! Thanks

Yeah this sure is tricky.... his assessment results were: recall of designs 42nd percentile average word definitions 38th average pattern construction 31st average matrices 50th average verbal similarities 27th average quantitive reasoning 84th - above average verbal ability 32nd average non- verbal 70th average spatial ability 32nd average BASII results word reading 87th above average spelling 92nd above average number skills 84th above average just trying to work with parent partnership now to. Going to get him signed off sick for a bit,l get a list of all specialised school s within and outside of the LA, but I truly don't think a school placement will work, ever...He is a total recluse now. WHich guts me no end Not gonna de register just yet but it's something that might happen. I'm really more worried about his mental state, he sees no hope for anything in the future...which is horrifying as a parent,but I'm hoping some time away and get his meds right, we will have a better image of what could happen..... I don't hold out much hope though for attending an establishment, the events have had such a bad impact on him, his anxiety and depression is really bad.

Hi I've just joined this forum, mainly to see what other people have found useful and for advice maybe and to try get my head round what's happening, perhaps a sounding board! My 14 yo son was diagnosed with aspergers back in October 2010 after a drawn out struggle with senior school since starting in Sept 09. It perhaps began when his junior school merged with another in jan 09, things started to go skewy. It manifested by refusal to enter classrooms at secondary schl, then poor concentration in classes, then blatant refusal to go to school. It was, unfortunately, his headteacher, a very stern, obnoxious, aggressive character, who first dealt with this (wrong place wrong time etc) and he was the first to mention ASD. This began in Dec 09 really, and spiralled without intervention until around April 2010, when education welfare and additional needs became involved. No formal assessment was instigated at this point, and attendance of schl was poor at this point. By Summer, after an attempt at a part time timetable, and only being dealt with by in schl special needs teacher, I received a threatening letter from Ed welfare saying I would be taken to court, this was august 10, I rang this ewo in desperation, asking her to help me get him referred somewhere, quick. The upshot of this was a meeting at school with clin psych in Oct (he didn't return to schl in Sept, and was still absent by this point) He was assessed and diagnosed with ASD at end oct 10. He didn't attend schl again, until a series of meetings suggested changing schools due to the lack of progress for diagnosis and support. He reluctantly agreed to this, albeit his mood was very well by now, and we geared up to start a new senior schl in Jan 11. He attended his first day, a miraculous event considering his frame of mind, and his lack of schl attendance thus far. It lasted a day. He hated it, he felt insecure, lacked confidence and self esteem and went one more morning and that was the end of that. We again got referred to EWO team, this time to a different ewo who was more 'in my face' and determined to discover why I wasn't 'making' him go to schl. By the time we got to 7th January, he sent me a message whilst I was working to say he wanted to kill himself... I immediately returned home and tried to calm his anxious tears and shocking mood. He was referred within two wks to child psychiatrist, who diagnosed mixed anxiety and clinical depression. he was started on Fluoxetine medication (anti depressants) to my horror, but he was terribly low and very upset. Basically, to cut out a long bit, he got signed off medically for a while whilst home tuition was suppsoed to be put in place for him as an interim provision. This didn't happen, people didn't communicate, or fill forms in so basically by the time he received tuition at home it was June, he got 4 wks before sumemr term started. The tutor doesn't display any behaviour of understanding ASD, and continually professes her frustration and repeatedly tells him if he doesn't stay on task, or refuses to come downstairs for her, that he should think of the consequences and stop being rude... yet another fail. We ended up changing his meds to Citalopram ten days ago as fluox was not really having much effect, even the psychiatrist struggles with which bit is his Aspergers and which is depression. It's heartbreaking. His mood is very low currently. he doesn't have friends, he speaks to some people he knew from primary or senior schl on facebook, but rearely leaves the house. He has reverted into a shell, a recluse almost. He hates social situations, often refusing to go, he takes no responsibility for personal hygiene and often just plays on his PS3 for periods of time, the rest of the time just declares he's 'bored'. He had to go through the statementing process recently, which upset him hugely being asked if he'd like friends, if he'd like to be 'normal',. which , of course, he is desperate to be, as far as their definition of normal is anyway. I've just had a report back this morning, the propsed statement...saying he should go back to mainstream, have a TA for 15 hours, make friends, learn to communicate, join social skills groups etc etc etc.....this couldn't be more inappropriate for him, personally, and I feel quite stressed and befuddled, for want of a better phrase, as to what to do next. His home tutor has basically alienated him, once he has made his mind up about something, there isn;'t any reasoning, she's a non starter for him now after how she is with him. I feel my only option is to deregister him, focus more on his emotional needs rather than his educational needs. It's more important now. He is high functioning, gaining all level 5's SATS at primary, a little clever clogs But his senior learning stopped in or aorund feb 2010...a year and a half later, he sees no point, to anything, education, anything. I'm completely at my wits end basically. The professionals tell me constantly that people have turned around from this with help. I know he won't manage mainstream, or any stream come to that, even home tuition is difficult for him. Nobody else seems to understand what he is going through and I feel I am his anchor, but even i'm now struggling to be honest. I need some info on deregistering, what that means, what I would have to provide regarding an 'education' ... I'mat the point now after a year and a half of battles and frustrations and heartache, that education has ceased to be the 'be all and end all' .... Im more concerned about his state of mind, his future, that he currently doesn't see... Any info or advice would be hugely appreciated. Thanks Lou

Hello I'm a Mum to a 14 yr old boy who was diagnosed with aspergers at 12 years old, I'm hoping to get some advice and use this as a sounding board probably, hopefully discovering some info along the way! Louise