MelowMeldrew

We've had nothing this year at all, my son is 15 and they wanted him to attend 'playgroups' with 7 and 10yr olds and kids in wheelchairs, he refused to go, as there is nothing at all for any child over 14 here with autism, like yourself my son goes once a fortnight to a bowling session, with an adult never another child or peer. Another summer holiday like this,and I will need adult support too, he has gone completely hyper and is totally frustrated, and even the NAS didn't turn up when they promised, his 'social worker' has been on holiday all the summer by the look of it ! Unless the 'activity' is totally 1 on 1 he won't participate anyway...in anything. As most 'activities' they do provide are not for his peer age group and centred around 'group' works or sport, it is a no brainer, he won't go at all. One person fine, 2 dodgy, 3 or more he runs to the hills... I cannot think of any activity he could get involved in, we've tried them all. Perhaps long distance running ! then again I would have to keep up and show him the way and I hate sport too lol.............. I think sport terribly over-rated as an ice breaker with autistics, or maybe it is just mine that hates it... I curse the day they invented social inclusion I am sure they are taking the pee out of us.....

They also said "Get him rehab or sorted out so he stops..."

I looked at this site yesterday, however it carries a virus warning ! A grant sounds OK, but will I need confirmation from an consultant it is necessary ? Last time I made enquiries they laughed and then got annoyed at us ! said "Keep him under control..." That's like saying to someone in a wheelchair get a grip and walk instead...

I need to lock 6 taps he will just go one to the other. There is some device they tell me you just fit over the tap which can be locked which sounded ideal but I couldn't find it online. I've had 3 taps replaced in 6 months he has just ruined them, and issues with the hot water tanks, if we get a water meter I've had it, I'd be bankrupt in 3 months ! I am more worried about the hot water taps which he leaves on continuously, electricity bills have gone up third too.... In the daytime I used to put a bowl of water outside in the garden and he would play with that all hours and leave the taps alone, but at night it is back to the taps again, or even ignoring the static bowls of water and messing with the taps anyway, I am getting it 24/7 at present and all hours of the night too. He seems to prefer that to sleeping now. No distraction technique works any more so its direct action via preventing him turning the taps on, or I am running up and down stairs all hours trying to turn them all off. He gets aggressive now if I try to stop him as well. It's pointless locking the bathroom up and the kitchen. I can't control this obsession at all...

As stated before my son's water obsession is costing me very dear, as he turns taps on day and night, sometimes 40 or 50 times a day if at home, and from kitchen to bathroom relentlessly (Even after midnight and at 5am). I need a device or tap that can be locked so he cannot turn the water on at all, it is the only thing that will prevent it at home, I have seen such taps for outdoors but none for indoors, anyone know where I can get either a lockable tap, or a device to prevent him turning it on ? do alzehimers and young children have devices to prevent scalding, these might help ?

If I am perfectly honest explaining why it happens is becoming more irrelevant, unless it can help us and him manage it. I get frustrated by people telling me "This is what autistics do..." then walk away. No autistic displays the same way, so I am not interested in an academic course on Autism, I want support and info to deal with real issues in real time, that's how they are presented to me. I've got the NAS coming here very soon, it will be the first time anyone connected with my son's condition outside school has turned up, I'll let you know how it goes ! It's clear to me I cannot deal with multiple issues all the time, some are being neglected, (I can only do so much), and some need addressing right now and cannot be shrugged off as "this is what autistics do..." I think we all know what our autistic children do... but I don't ant to write a thesis on it... we want our son to experience some peace...

We can just as parents get bombarded with all sorts of reasons for everything, mostly we just try to deal as they come at us. If you are getting multiple issues I try to deal with my son's 3 obsessions, as well as a total no-no on communicating to anyone much and refusing to interact, he also has not sat down for months just relentless pacing up and down or outside running full tilt at everything. I just do not have the wherewithal to address them all simple as that. I just have no time to find out what drives most of it, or even if there is a way to address it, I am pinning hopes on an new assessment soon. I rather fear medication will be suggested, and I have been against that from day one...I've never asked for or considered it. Once you start there is no end is there ?

I know my child doesn't. My child TOTALLY dictates how my family lives, there is no way you could ignore it. We've tried the options, they didn't work and there are no more of them. I am just a bit cheesed off at present sorry, I've had a very difficult 2 weeks with my son, as he is presenting new issues and getting bit aggressive, and very hyper all of a sudden, which we haven't really had at all, it's always been the silent passive nothing response mostly, I had a nurse yesterday, a Dr today, all they say is "This is what Autistics do..." and then go again ! thanks for nothing really, I KNOW what my autistic does ! (I wanted to know what respite I can get, and what will help HIM). What are medical people for anyway if that is all the advice they can give ! I have a referral to cognitive consultant, but the list looks a mile long and then some, so no examinations no treatment no therapy, and no assessments until then. And that has taken 15 years...

My lad has been like that since 5 years of age he is now 15 and no change, does NOT want to do anything with anyone. His own thing not much else. Your mistake (And mine), was thinking we can change that aspect in our autistic child, you can't. If you are trying to get him to be similar to every other child you are for a lifetime of disappointments sadly. Forget all that advice about local area provisions etc, that's the hype for the most able autistic not the rest, our kids won't want to know about it.

Nowt like that here lol I noticed it said "Some children may be unsuitable." Knowing our luck mine won't be. He won't do anything with groups, even small ones, so it has to be a one on one thing. They have tried sport/music and everything he just does NOT want to know. At present wherever you take him he will not join in with anything. We have totally exhausted all current options... I wouldn't mind him doing his own thing, but that 'thing' is nothing but aimless running around and flapping. If they make that an inclusive 'sport' we are onto a winner....

Ah respite ! how lovely that must be lol (Not that we have ever had it but...). School clubs ? it is clear some areas are spoilt for options and others with none at all. Our school is 40 miles away hardly practical even IF they operated a club which they don't. I also need total convincing college is worth him turning up for. I'd prefer he stayed at his present school and slept there 4 days a week to help him with skills we are struggling with, this would offer us respite, and offer him support in an area he is comfortable with, but my local LEA is determined to throw him to the mainstream and inclusive wolves to prove a point. I have the NAS coming here for 2 weeks a few hours a day to look and assess, perhaps to suggest ways we might not have used yet to help the lad manage himself. But it all looks to him and me, like he will always need help regardless what we do. He spends far too much time at home not doing much and we have run out of ideas frankly to keep him amused or distracted from his obsessions. It's a recipe for more meltdowns like we had today, you can't keep an active teen running around in circles at home for long and not feel they will get frustrated by that. I think my lad and us need a break ! There is none offered or ongoing, you just do what you can and hope don't you ?

I got my son a SW day one, they did nothing until he was 14 yrs old ! I am totally dreading the 16yr old thing, College and the rest of it, because my area has no backup systems for autistics and we have never had respite. I do not believe college is a valid option and said so. AS I write my area had no system really set up for teen to adult autistics. It is all make do and hope for the best approach which isn't really encouraging. A recent meeting all agreed socialising and attempting integration etc is now an non-option, inclusive sports/play have been dropped the last 14 months, and only then because my son found the voice to say he wanted nothing at all to do with it. We had been sending him to his personal room 101 apparently, inclusion ! That is why they say there is not much point in providing people to try. Just where DO you go from there ? So long as he has Mum/Dad and people stay well clear of him and he does his own thing, it's not problem to him. I'm just awaiting some bright spark from the equality and access area to say he MUST socialise and attempt inclusion, aint got it have they ? An 'disability sport' event saw my son shouting "I don't want to be with these people !" (Didn't go down very well!).

Since my lad hit 14 years of age, he has increasingly withdrawn from the usual modus of communications we have managed to use with hi, lately we are getting hours at a time where he refuses to communicate on any level at all, and it is a real struggle to get an answer to the simplest of questions. At 4 years old communication was near 100%, at 7-8 yrs old less than 30% now aged 15 struggling above 10%, do others get these things ? is it a phase or signs of something serious, like complete withdrawal on the cards. he is polite, quiet will do what you ask but you get no communications two way at all recently, we have found this very upsetting, there seems no way at present to see why it is happening. I get weekly response from his school "He is OK..." and that is it, which isn't helping me much to understand what is going on. If he continued like this another 2 years we would have lost all contact to him... he now giggles continuously and laughs if his mum gets upset at no answer,now he is doing the same to me. Deliberate ? or regression ? I can't tell at present, I used to be able to know.

Mine was in nappies until 6 yrs old. He would not use a toilet or potty, neither we nor the nurse got anywhere.. He went to school in nappies, they would not change them. It wasn't actually a problem, because my son had tremendous control over his bowels and would never ask for the toilet in school, however he would soil himself the second he left the school gates ! I eventually cured it, by forcing him to go by giving him plenty of food and drink prior to attending school, he was then left with no choice but to ask for the toilet, as he couldn't 'hold it' ! Overnight he just decided to use it. ?%!?

Me Too !

Of course there is no suggestion we withdraw what ability he has gained in FAVOUR of sign, that would be wrong. The issue of home signing is that BSL structures are not using the same grammar as schools do. That is why I wanted him taught appropriately IN school so that there is continuity and he doesn't get faced with an and/or situation, progress/failures could be monitored and adjusted. I felt anything he might learn sign-wise has to be within his educational context, we cannot afford conflict. The school has refused pretty much until now it seems. The other problem is that NO current BSL class in my area would take a child like him, they said his 'needs' would make a class not viable. It would have to be one on one, and none would volunteer.

I've been concerned for some time speech therapy in my son's education was failing. I fact ALL speech therapy he had been given including advice we got to support that has failed. Could it be they are now admitting inclusive policies and intransigent attitudes to communications in my son's case has left my son with even poor communication options than he would have had ? Today the school wrote to me organising a meeting with us and the SS and the S&L therapist to discuss abandoning priority on speech and an emphasis instead on sign language. Both us parents are deaf and familiar with this of course although I lip read very well and my speech has no issues, it is clear for reasons we may never really discover he has no wish or real abilities to talk to people. As parents we were subjected to years and years of advice sign language would kill off any desire by our son to speak, in effect we deferred our own primary means of communication to help our son on that advice. Last year I said enough was enough, you have had your 'time' with your 'theories' on speech and it has failed, so time to try something else. Why hadn't alternatives and supplements been used anyway ? Recent suggestions regarding 'cards' seems to have been dismissed too, I said that would not have much success anyway,and would not enable his communication with his parents either. Was my son discriminated against because of prejudicial views about deaf people by the system ? They were on course to educate my son for nothing at all really, he would be leaving school with little or NO means to communicate at all. A social worker at day one and even recently said "IF we teach him sign language, then he won't be understood outside the school..." I said, if he doesn't speak surely the same is true ? and, if he signs he WILL have people to communicate too, even if it is only deaf adults and deaf children he will have some reference point. what are honest views on this ? If you are faced with the fact your child cannot or will not speak would you consider sign language instead ? I won't be offended if you suggest no. I'd just like a general view. To date I have always found speech and language opinion heavily against sign language. Surely communications come first ? His mum said he would have been better off in a deaf school than an autistic one... since they concentrated more on communications and expressing it...

The problem with medicals is they simply diagnose issues, they don't or cannot effectively state to what degree an issue disables. Mostly the idea of a medical is find what you CAN do not what you can't. That old criteria has gone. What is also needed is an 'expert' who can effectively state the degree and effect on the person diagnosed. You can't leave that to political motivated cost cutters. Can a doctor define how capable a person is of achieving quality of life, or can even define it. They have made a complete mess so far. I expect nothing less than a flood of complaints when this system gets under way. Sharing the debt seems plausible, but it the ones who didn't create it, who have to foot the bill again.

If I did suspect I was autistic, why would I bother with a diagnosis unless I felt it lessened my quality of life or affected others ? That's the only grounds for a diagnosis isn't it ? They say there are 3-4 times as many autistic as are officially diagnosed, it doesn't affect day to day life or they manage it... is there then a point ?

Mine had formal diagnosis at 6yrs of age, he didn't get pro support until he was 11 ! It was a succession of baby-sitters. He will never recoup those lost years. I wasn't in a position of being able to home teach or I certainly would never have sent him to school... on the grounds he wouldn't have learnt anything, since the main reason 'interaction' and 'inclusion' never happened, it still doesn't inside or outside school. It took a very long time to convince people it just wasn't feasible, and they STILL try ! I suss they are scared we will tell them main streaming and inclusion policies do not apply to some autistics at all.

I'm a supporter of counselling and therapies, I don't support drugging our children. It is better if the autistic can learn to manage their issues. America drugs their kids from cradle onwards, I'd hate to see Britain following that line. Most are prescribed simply because the therapy and support is not there... I can understand how difficult it is for parents, but we should be lobbying for the non-drug approaches.

I'd settle for anything... it is the the thought he has no interests at all,and no desire to do anything but flap around, and bite his hands all day when he isn't incessantly turning all our water taps on at all hours. The thought he has no capability to amuse himself even for an hour, and needs to be directed to do anything, when you stop directing him he stops.

NO hobbies, NO Interests, NO Friends, and very little communication. He doesn't lift a pen outside school nor read anything either... we are still looking for that breakthrough of a 'hobby' once we see that we can then move, until that time, it is exposing him with support to anything and everything in the hope something clicks... We are having a talk with the NAS re OUTREACH to see if that can help. I have no idea at this stage what the OUTREACH actually means... if it is all adult support then I fear it won't work, he has yet to play with any child.

My son won't CARRY money. He's like the queen lol in all his life he has never gone to a shop on his own with money and bought something.

Mine to a T lol......... In his cupboard he has unopened Xmas presents dating back 6 years ! we cannot open them for him he won't, go figure..... he plays spiderman endlessly but only one level for the last 5 years, he asks for the comics, then hoards them without ever reading or opening them, when I did open one and started to help him read it, he tore it up and threw it away as 'tainted' because I had handled it, he collects... that's it. He will not eat off any plate but his own, and if someone pinched something off the plate for a laugh, he would not eat the rest of the day....He will enter a cafe, you ask what do you want to eat ? he says nothing... we don't ever take holidays away from home because he would starve ! he won't eat if other people are in the same room as him but his parents... holidays are a no-no of course except a caravan or something, but again if we went for a meal he wouldn't enter the restaurant or eat if we did....his birthday ... Nothing.... for Xmas... nothing.. what would you like to do today ? nothing.......! it's not to do with easy to please, he has no desire for anything much at all... He likes to go bowling, I said would you like to some bowling gear ? NO !!! Nothing you can do... nothing ANYONE can do so far...