MelowMeldrew

for me reports HAVE to be accurate, because once one service provider assumes something then that is it basically, nobody listens to parents, you have to keep control over what is said and put down in writing, and if you don't agree rip it up and tell them to do it right. 'Chinese whispers' can make your AS child seem something totally they are not and it just takes one bad assumption to creep through, before the rest seize on it and assume the same, they are ALWAYS looking for negatives, you have to understand these agencies rarely if ever talk to each other at all or cooperate, It is actually very rare they tell the parents the assumptions made by people who have access to all the information, and that ISN'T the parents. Why we don't have full entitlement to all that info is a cause for concern, and civil and legal right. They always hold something back to try to undermine you if you want to challenge their findings. I think it is time parents recorded all meetings so they can refer back, and took witnesses with them. This has been discussed already via DLA applications, a parent's right to record meetings and decisions taken via them. After all as 'agents of the state' the system does not have to tell you anything, and can record you as well !

My son's social worker seems obsessed with paperwork too ! I think he hasn't a clue basically what he is doing, and is trying to do a crash course in understanding autism his own way, I've had to reign him in a few times already as he misinterprets every thing my son says or does, and yes, 'serious behaviour issues' are being flagged up where there really are none that have caused a real problem, simply because he doesn't understand autistic behaviours. And yes he is looking for cause why the autistic IS autistic by looking at the parents ??!!?!? Another parent I know said her social worker wanted to examine his bedroom, his computer games, HER computer, to see if the reason her child was behaving badly, was her allowing him aggressive games, access to the net, or watching violent DVDs and TV programs like coronation street lol.... Just looking to someone to blame really... My son's social worker has been told the bottom line already by me, and he is only 6 weeks in... I give him 6 more before he quits.... or I sack him, he really is out of his depth, and little use at present as I have to keep correcting his notes to other providers. The child support team I use once weekly said they thought the SW had no idea what he was taking about as they supported my son over 2 years and seen nothing to justify half what he was writing.... and were willing to contradict him.

So the mental health assessment means the the child is not living at home ? I ask because my son is due this very soon. We would not be happy at all if our son was asked to live elsewhere.

I use e-mail all the time direct. The SW is not supposed to by-pass you by consulting others, I'd take this higher. Basically it is lazy social work rather than make effort to talk to you direct or listen, they pick up a phone talk to someone else, and then cancel talking to you. I went to my MP when they tried that and the SW was carpeted, unfortunately he then left the service because he said clients were ungrateful. No loss, one less loser in the system. I complained because attending my son's school was being affected, they were by passing parents getting info from schools so, did not have to support us to go to the school for meeting where we could directly access info ourselves, in short it was cost saving at the expense for keeping parents out of the loop. We sent a legal writ to the LEA and SS threatening court action, they soon come around as they were obviously breaking the DDA law. Get tough, your kids get only one chance, it is illegal to prevent a parent being actively involved in their child's education.

SS are stupid and ignorant people mostly, they may know about child issues but hardly ANY are knowledgeable about Autism, I gather in my whole are not a single social worker has ANY knowledge of autistics nor autistic behaviour, I know, because the System advertised for them and none came forward. Only last year an directive from central service said all LA's HAD to set up an effective and viable system of support for autistics and their families, again, barely ANY exist there is no-one to staff these areas. Some SW are coming in, are out of their depth and leave. Some after a few months or even less. This causes huge problems for parents with autistics whose children start presenting issues at school e.g. Any 'problem' is then home based ! they look no further, and have no other reference point. The thing to do is to refuse social worker involvement unless they are knowledgeable about your child's issue, because many are not even referring these kids on to specialists, despite their own lack of experience. If we have chest pains do we see a vet ? Yet we are expected to recognise an amateur psychologist from SS college is an authority... A lot are just assuming abuse to prevent national outcry, cover their backs, it's another sign of the times, they need to get their act together. No wonder SS can't keep people.

Will do ! I am surprised initially they didn't consider there might be an medical issue involved, especially as he is in the middle of puberty, and no doubt hormones are firing on all 8 cylinders, as hormone imbalance can be addressed. they could be treating result without addressing the cause. However taking on a clinical psychologist and half-educated social service is fraught with issues isn't it, nobody listens to parents, if they had my son would have had all this 10 years ago..... Perhaps we could do with some representation ? Sadly British systems ridicule American surveys and will not accept or even read them. My GP said stop reading online listen only to what I tell you. I am the professional they aren't.

I am due an 'official' visit tomorrow by his social worker who has applied for priority assessment. Pity he ignored the last 14 MONTHS of us asking for that. Always the same isn't it, we voice concerns for ages, they ignore, the school hits a problem everything starts moving ! The system only listens to the system. How many other parents are forced to endure real issues for months and even years on end because of that. I want an medical examination done as well, as I feel there is room to investigate hormonal imbalance too, his GP is useless, when I asked him for referral he didn't even look at the boy, just told his nurse to weigh and measure how tall he was ! If assessment is going to now take place, I am going to demand they do a proper job of it. I read an autistic site however that stated 2 out of 3 autistics do NOT benefit via MH support or therapies (?) Is it still all uphill ? MH teams are not much use unless they have an autistic specialist there ?

SS went to the school, and an clinical psychologist was called to observe my son's behaviours. SS now want to refer him to an local clinical psychologist as a matter or urgency. We had been waiting for an appointment anyway, now my son has forced the issue. I think it is typical of the school, however observations there only give a clue to his reactions in the school, and not at home where his actions are much more serious and an issue. My son must have shocked them there too ! I'm not well up on hormone imbalances and autism, but I tend to think a lot of the issue is there. His reactions the last 6 months are totally different to what we were used to, it is such a difference that has forced the whole thing. From virtually mute, he has gone to shouting and ranting, from very shy and clinging behaviour to his parents, he has gone to an hyper active 'running-man' who has no awareness of other people, and appears not to want to hear what people are saying or totally ignoring them, he has no ability to even sit down or concentrate for longer than 50 seconds at a time, whereas before he would play his computer games for a long time with no issues, now he can hardly get past the opening screen of it. Sudden changes suggest an imbalance somewhere, however sudden change is what he is about, there was never much warning of what he would say, do or react, there was never a lead up to things, one day he would do things, another day he would never do something else again. I warned the school and SS a year and a half ago there were changes coming rather too fast for us to deal with, they and the school looked on them as positive, but he was at home total disruption in action, no matter how well he did at class first. Does a clinical examination cover a medical one ? it doesn't does it ? If there is hormone imbalances he has to be tested first. As we noted 100% increase (!) on his appetite, he would eat literally anything that was edible, he was 'grazing' around the clock, eating raw potatoes, 6 oranges at a time etc.... He has gone from a very fussy eater to someone who will eat anything in a matter of weeks. I'm just thrown by it all..

The primary issue is for my son to find some calm in his life. I thought very long and hard about assessments, as you say you really cannot know what they will find or even assume, given the gross incompetence of 'specialists' I have seen so far.... However 10 years hard slog by us has not resolved the issue, we're running out of diversions and 'containing' the problem. it is seeing him in distress that has prompted my request and not just how hard he has made home life for us. I am quite prepared to go on until I drop, he's my son, but this will not help him. The head has to rule the heart at some point, you are no use if YOU are flat on your back. If it is a matter of some medication or something, he won't be the first autistic even in his class to have had it. If my son gets some calming measure then this will make us calmer too. However until he is properly assessed we don't really know what is driving him. We're in an uneasy silence at the moment... none of us really wanting to force the issue with him. I think the next weeks will see some result or other. The lad has forced that himself. Which is ironic he can make things happen in a week we couldn't as parents make happen in years, nobody listens to us do they ? Of course it may well transpire they will do nowt !

Seems the school is now worried, I have been sent a letter saying they are going to bring in a clinical psychologist into the school to assess his behaviour there. If they listened to us 14 MONTHS ago...

He seems not to be presenting the issues as badly at school as he is at home... yet (But has started) ! which is no help to us of course. But he has a record of duality. School gets Dr Jekyll, Home gets Mr Hyde it's always been that way (I have lost interest frankly in school reports, it just looks like they are talking about a different child to mine). Obviously a special school has very strict 'containment' rules in place and very organised routines, as well as fortunately, a fair degree of small classes and adult support in them. Of course us poor ole parents have no way whatever of matching that type of routine or support and have to teach our child to exist and function in the real world where there are no routines, people are not accepting or willing to make allowances, and he HAS to get used to a lot of things that are not presented on the school front, like issues he has difficulty with not presented there. Schools exist in a vacuum mostly. I can only assume that my son has been conditioned now to the type of support he gets at school and cannot cope when they are not there, and he is outside it, I suggested they were institutionalising him by default and making it more difficult for us. I think the difference in Home/School approach is at the root of most of it, as parents we have to look beyond school, as educationalists they stop taking any further interest when he leaves, a statistic. The problem with all that, is the system then looks at you again, school great, home not so great, what are WE doing wrong. And of course anything that happens is Stress related ! I said no it isn't, he does what he does because he is driven to do it, it's autism, and he gets a lot of fun in his own way with the behaviours he exhibits, sadly not as much fun for the rest of us ! IAfter his entire lifetime, I have a fair idea what stresses him out, and they haven't even examined him yet, I've told school I cannot duplicate what they are doing so they need to adjust their methods, and as there is no back up outside school for us to do that. We can do nothing until the gears move, and as we know they move very slowly. There is a list, at least they said, you are now on it !

What does this really mean ? My son was last examined when he was 4 and diagnosed autistic, he is now near 16 ! Because we have had so many issues recently we cannot cope with, we have asked for this and a full diagnostic examination medically via blood tests etc to see if hormonal imbalances are driving the very chaotic events we are experiencing at present, suffice today, we have informed the social worker we could not handle our son for any extended length of time at present. We are getting waffle and agencies need to be informed, but I did this 2 YEARS ago and they never moved on it, just left us to get on with things. This summer holiday we did not think we would survive looking after and containing his erratic behaviours and called in the Doctor. He just said our son is physically OK and walked away, this we knew already as Autism is not predominantly like a limp or anything ! I've never in my life experienced the full range of Autism as we have this year, it is 24/7 and the only time it stops is when he is too exhausted to continue. I asked for the new assessments and regrettably a need for some respite...am not sure what they involve frankly only that in my view he is very long overdue for having them, albeit they waited for the parents to crack first before they would listen ! Mum has caved in it is just Dad containing what he can. Will he have to stay in some unit and be assessed over time ? they won't get any idea by an odd hour watching him. Who decides on medical interventions (Ritalin whatever ?), my doc won't even talk to us says it is up to the clinical psychologist now, but there are huge waiting times and the SS seem to not understand what they need to do and asking me. I contacted the school myself to send reports to the clinic consultant, I did ask my GP to do so and social services, since they will do nothing until they have all the reports in front of them, the SS are very slow in doing this and I'm getting totally frustrated at their inaction, what do I want with them if I have to do everything ? the issue is medical people need paperwork with their names on it, not ours... yet only we are aware of the full extent of what is going on. We feel very left to get on with it, and reaching a point where we won't be able to soon. They want the balloon to go up before they move... anyone else waited 10 YEARS for their child to be examined properly !

Do not feel guilty at all, and don't let SS try the guilt trip either. You can do your best you can do no more than that, yes there but for the grace of go, a number of us, we carry on until we can take no more, then still feel obliged to carry on ! A child does not even have to be directly aiming aggro at you, simply their behaviours or and compulsions can get too much. We've had 3 adults here at times just trying to get him back to planet earth long enough to sleep a while. SS say no restraint can be used, and the medical people say he is medically fit, so, no medication either, back to you mum and dad ! My boy is 15 and counting, again "It's an puberty" thing he will grow out of it, erm... maybe not ! especially if nothing is done to help parents to cope with it, and him. We would be in the same boat as you if he ever decided he wanted to step outside the door on his own, I fear we are nearing that decision with him. His confidence is increasing while his self awareness remains near zero and that's the problem.

My son is very direct about this too, if we have visitors he will initially go upstairs and wait until they go, no attempt to interact with anyone, if, the visit exceeds his 'timetable' he will go up to them and ask when are you going ?, why are you still here ?". Takes some explaining, ! and it makes no difference if it is family or our friends. I try to tell people he isn't rude, but the home is his space and he will tolerate you in it only for a short while ! All I get is "He needs sorting out!!! he is a rude young man..." It's just he can tolerate people only for so long then he gets stressed. My sister told me recently our grandmother was much the same, you had a set time for hello, and how are you, then were expected to leave... or she would say goodbye and leave you there talking to yourself lol.......... But I think my Gran was just rude basically ! I value my privacy at home too, I don't really like lots of people about or I get unsettled, however tests show I am NOT autistic, just like the company of a select few !

Stupid advice isn't it ? 'Less stress' sorted.... without support there is little way to avoid stress, unless you emigrate to live on an mountain top or something. I confess the last 3 months I considered that !! We don't want support for us really (I don't), but I DO need support for my son, since if he is calmer and more relaxed, then I am. Mine can stress us out every waking hour of his day, we just get told to 'hang in there' by some twerp of a consultant who must be an failed hippy or something...

We're falling asleep in the day now he is back in school lol. SS are a complete waste of space, it's just not worth my time chasing them up except when I want a form signed. Basically they cannot offer what they haven't got. Most I have got I told them about and still had to lobby for it alone. They ask me how he is doing so their records are up to date and to justify their existence, that's about it. I've been trying to link the school with the SS and with the psychiatric support here, and guess who is dragging ? yup SS again ! I gave them the contact of the support team, who wanted feedback from them, and I just got an e-mail asking, 'what is a child psychiatric support team ?' DOH ! He could not have even read the contact form he was sent or noted the address or anything. The issue is unless these no-marks sign forms I am ignored, and nothing proceeds. It smacks of an archaic SS system that died out 18 years ago.... They won't take a parents concern about anything it has to be 'official' I'd just be happy with PROFESSIONAL ! As regards to medication, it was just one means I asked about along with therapeutic support for my son to handle his issues himself if possible, we cannot handle them 24hrs a day.... 3 at the same time we are getting nowhere. OCD's cannot be cured, they can be managed, and I assumed some form of medication initially might be necessary (Not long term), to slow him down enough to basically listen to what is being said to him, the only time he is static is when he is asleep otherwise he is pacing the rooms, running around the streets or in headlong flight everywhere. I am assuming counselling cannot take place unless they can stop him doing this for a while. Maybe they can fit him with bluetooth in his ears and counsel him on the hoof lol..........

We're virtually house bound already have been for years really ! we've never had a baby sitter, hence we don't socialise of an evening either we did do a haven caravan holiday once we were lucky to get through 5 days, he did nothing but run around in circles threw stones at the other caravans and refused to go with us for meals or anything else. NO thing social at all transpired I hardly was able to talk to the people next door. We found SS totally unreliable, indeed of the 6 we had in his 15 years he has met in person only 2 of them. The others left the job lol..... one, 10 days after being assigned to my son, we waited 9 months for another one.... we cannot talk to other parents except like this, my partner would need extensive communication support charities and 'groups' cannot afford to provide. To be honest we're talked out. I feel I know what is needed and know what our limitations are, we have failed to get anyone to stand still long enough to tell them. The only time I can de-stress is when he goes to bed, that is little respite at present either because 5 am he is up and about again running around the house with lights on. He was up at 4.45am today school taxi didn't arrive until 8am, by 10:30am I was falling asleep in the chair. Looks like I am going to sleep the day shift while he stays awake most of the night again. I told his SW we are reaching a limit soon... even I need to sleep even if the lad doesn't.

His issues have been deteriorating by degrees a year at least, last summer holidays was a hard time, but this year !!! It's not all bad news some communications and confidence has emerged.....He is in his world more and more now, and likes it. I will see the NAS in 11 days after 8 years trying to involve them. I really do not have much idea what the NAS does to be honest, I've no doubt as its a charity continuity may be a problem and that is an extra worry. I asked for peer support for my son basically, and somewhere he can go to develop a hobby or interest, as he has none at present. I am chicken to ask for respite, I'd fear we would lose him (Silly I know!), but his Mum is not coping well and the reliance totally on me is putting me under pressure as after 15 years I can really do with 5 minutes on my own, or even with his mum if it comes to that lol Without her supporting me it could have been worse. His care is totally consuming and there is little or nil time for anything social or holidays or things others may assume as normality. I'm not even sure what I or Mum would do IF we had respite, it's been so long... what if we like it ? I'd feel awful again... However there are signs he is wanting to do his own thing, it is what teens do after all, it's a matter of us finding out what that is, and hoping it is not total immersion into his own world, or we lost him already.

I'm holding fire at present on the psychiatric team until they actually do something I have no way of seeing if it has a point or not. I'm not put off by titles, if the results are no good I'll soon let them know, life is too short to listen to them rambling on about theory. They asked me "Would you like us to help you understand what autistics do ?" after I finished laughing on the floor, I said "After near 16 years I have got a fair idea thanks !" I KNOW what mine does, what I want to know is how can he and us as parents help ? I don't want a load of bumpf about it, or sit there being told to be 'patient' I said my patience has been pretty good despite considerable pressures, and listening to experts drone on doing nothing practical. I told them if there is no concerted effort to support I am going to be a very real pain his posterior. You have to fight for your kids don't you ? it's a lifetime of fighting really... I'm surprised you are abandoned at 16 with your child ? mine is staying in special school until 19 and then college after, although I am unsure a college is practical, as he resisted reading and writing and communicating at present as well as totally avoiding peers or inclusive aspects, he refuses sport too,just what he will actually DO at college is a mystery. I am watching the LEA to see if it is just a ruse to pull him from special schooling to save money. If it is a choice between special school or college I'd go against college. I'm totally unimpressed with present 'FE support' options. I feel awful I want a break, but we are increasingly needing one if we're honest.

I'm probably the only one (Not !), who is entirely relieved their child is going back to school, my lad is 15 and I have had the hardest 2 months of his entire life this holiday, and worried I wouldn't cope with such a long holiday again on the terms I have had this time. I've got stress headaches and head pains related to it all. I love my son to bits, I am just about on my knees now though ! I have everything including NEXT door's kitchen sink thrown at me this year. His appetite has doubled overnight, and he is grazing food 24/7 (why ?), his street behaviour completely out of control, and I was cautioned by the police last week to 'restrain' him in case he injures someone running about. I said have YOU tried to hold on to a 15yr old teen bigger than you all the time ? His OCD's (He has 3 currently), have intensified as well and meltdowns are becoming more common. All this has been on a 24/7 basis and at 2am in the morning 5am he is hyper and running about, the doc just said he is physically OK and then...left ! after he almost collapsed with the sheer exhaustion of running around for 3 hours solid ! His mum has retreated from interaction and just cannot cope with it and leaves it to me. I have consulted the child psychiatric team locally, they are making me wait months and asking for reports and the delays are not helping at all, I have campaigned constantly since my child was born and still the agencies will not talk to each other. I might have to consider medication despite a total NO from me up until now, I don't want a zombie for a son, and would look on that as a parental failure on my part. Who would I ask about it ? the GP said not his dept ?!?

Already an issue here, the LA wants to pull disabled kids out of all specialised schooling and put them in mainstream here, as my son commutes out of the area daily they wanted to pull the taxi service to save money. I said if they did I'd pull my son out of school altogether and demand home tuition which would cost them more. Mainstream is totally unsuitable for my son. He's never going to go back to it. I fought 6 years to get him out. I look in real envy at those who have services for Autistic children and things to do, we have nothing and it's getting worse, they want them out of special school, for what ? children First ? only parents believe that... then they said once my son hits 18 "You are on your own..." I said what's new.... it's never been any different. I'd move to where services are, but I can't afford to.... Like most parents would be, I'm worried silly what is going to happen. There's is no light and not even a tunnel to enter...

I'd love my lad to do it too, but there is no way anyone can convince him, his school failed, the inclusive play failed, the adult support is failing. We have accepted it isn't going to work, it's finding out what will. 1 on 1 and no other people sort of thing ! He was offered a free day out at a theme park with 3 other children and refused outright unless the other children weren't there. When we took him on our own, he ran screaming from the noise and too many people and we came straight back home, sensory overload, £150 wasted, so no holiday this year again unless it is in a field and miles from civilisation, which isn't our idea of a holiday really ! We live in hope 'something' will suddenly click and he will want to do it... I was suggested fishing, but I cannot see him sitting or standing still for more than 50 seconds... which is an issue if you are sea fishing lol.. It has to be a solitary occupation. I'm not pandering to it, it's just this is what he wants and needs. People he don't.

Last time we tried that he emptied the water feature all over the floor and turned it on and off at 3am of a morning ! It isn't a stress thing, he just likes doing it it may be the sound or something he likes. The worst part is he will turn the cold tap off when he stops but will ALWAYS leave the hot water tap on. He did it at 4 years of age and never stopped. I've had new ceilings put in where he left the plugs in and flooded the bathroom, he has done that twice in the past, what I did was hide the sink plugs so he couldn't leave them in, he doesn't do that now thank goodness but still turns the taps on. I put bowls of water out in the garden and he will play with that OK, but I'm back to square one if it rains or he is indoors, night time etc, then it's taps on again any time of the nigh or the early hours, he starts around 5 am onwards..... Nothing short of turning the supply off will work. Then maybe he WILL get stressed because he can't do it. An average day with my autistic child lol... but my utility bill has gone up a third and I dare not apply for a water meter ! He is attending a re-assessment in the next 2 weeks, hopefully they can help him address this compulsion, we have totally failed. If we get the taps sorted it won't address the compulsive aspect.

Wonder what the autistic response is to the new government policy of 'social inclusion' lol I'd like to see Clegg or Cameron convincing them.. My son says no, end of debate... political correctness isn't his thing really... What do you do, for a child that doesn't want to participate in anything ? It's quite a concious decision on his part, and he'll take what action is necessary to prevent you including him too... his social worker gave up, said as he is of 'age' and said no, there is nothing can be done... which leaves us where exactly....

My son is a walker too lol anywhere where there are NOT people (Parks etc), I should be fitter than a butcher's dog,but I'm tired mostly. Another aspect is travel, he will go on a bus or train anywhere, when we do that he sits on his own at one end and me the other lol.... he couldn't make it more clear he DOESN'T need people, and has no truck with anything inclusive which seems to drive the support system via it's politically correct credo, obnviously when some think tank suggested we will all lock jolly hockey sticks together and render a united chorus of 'I'd like to teach the world to sing..' no-one though about autistics or what they think about it, which mostly it's an alien concept to stress them out. They are still convinced the poor old parents are just not trying hard enough ! what part of no way jose' do they not understand ?