MelowMeldrew

Hi My son is to start full residential at a college shortly, we get DLA for him,CAre Allowances for ourselves, I am unsure bu I suspect some IS as well. What is situation when he starts college ? I think we lose the care allowance/IS and he loses the DLA he claims at home ? we get nothing else. Is it our responsibility to notify the DWP or the SS/LA will do that anyway as they part funded his college place ? It's some time since I filled in any claim for him we didn't have care allowances until he was 17 and we were entitled at age 6. The DWP lied to us and said as he got DLA he we couldn't claim care allowances ! As I write I have been sent JSA and PIP forms, and to be honest Gibberish is a language I never mastered, so I sent the forms back and asked for a form that was relevant to my son's condition Autism. They said there is no such thing, so how does he claim anything ? They also asked me for a medical note although he is still at school and demanded to know why he wasn't employed. His consultant contacted the GP who sent me a 'cover note' which was pretty silly, as it was for 4 weeks only, and irrelevant as he was still in education, the consultant then sent me a proper covering letter but the DWP said they do their own medicals ? As he is off to college looks like the SS will have to sort it out ! How do I stand if they continue to pay his allowances into his account and he is residential at college ? I am assuming neither he nor I should get it for his use ?

But if it means he is in constant pain and constantly isolated is that fair to him ? we need to remember as parents we have to have THEIR best interests at heart. E.G. If an non-autistic has issues we readily support help for that, why would we be viewed nazis for wanting the same alleviation for our AS children. I think Oolong explained it more succinctly.

I tend to agree,the NAS has proven pointless in Wales. The one time the SS paid them to support my son, the NAS rep sat and watched my TV for a couple of hours, never spoke to my son, then left ! After 3 weeks I'd had enough frankly. I'm concerned they are employing/using completely unaware people as support too.

I am wondering now to what degree will banning social services who have been found to have seriously misled the support team for my son with lies basically regarding support they haven't provided but sent letters to others saying they did. I cannot for the life of me understand why a SS dept would do this. They stated my son was receiving weekly weekend care respite when he has never done this and the area they stated confirmed to me he hasn't even been recommended to go there for weekly respite as it is a 'crisis' centre with a maximum stay of just 3 days and doesn't do weekend placements. This follows a catalog of hostility from SS who had one worker removed because frankly, he needed more help than my son did ! and my son would not interact with hi on any level. SS were forced to retract a posting made to a review claiming my son was a thug or something, because the s worker had never met him. They apologized but left it on file, obviously until they retract to match their apology we aren't current;y speaking at all as these things on file get read over the years by people who who don't know our son and will just read what they want to read. This follows other rows between my son's Consultant, and the SS who could not agree on the best form of respite to offer, in the end neither suggestions were followed up and it is a stalemate. I am convinced it is all about funding and our local Authority hasn't any. Is going to the SS ombudsman the next logical step to make a case for SS failing in their duty of care to us and our son ? Has anyone been through the process ? As I understand the system SS have a mandatory inclusion in support care via special needs regardless if they do or not provide an actual service ? SS are now using veiled threats to not support my son's placing in an Autistic college, despite our own area has already acknowledge they cannot meet his need here. They say they won't sign any forms backing up any financial support from them. As it is they refused to help us fill in the application forms and visit the colleges too. I did these myself and the assessments are already ongoing and I have a good rapport with the college already and full support from his current school and consultant. We suggested SS butt out at present until they can get themselves sorted out. We had a 2hr family support thing of a Sunday that last year we decided with advice from the school (who have been brilliant), that this no longer addresses his need, but again SS refused listen, as we understand it if we withdraw ourselves the unnecessary support then there is no service link whatever left between the LA here and our son. We feel that is why SS want to retain that Sunday link regardless if it serves any real purpose of support. Overall we are at ground zero with the LA and SS, is going the legal route now our only option ? Do we need SS included ? I think time to call their bluff and remove the last link to them,we have grounds it is no longer what is needed anyway. Only by exposing SS incapability can we get anything moving, I could run the system better myself frankly.

It is a misguided and dogmatic a sop to political correctness. Basically it is to save money, by using moral blackmail on already pressurized parents, by suggesting WE are the issue, and not the fact mainstream is not equipped with the staff or professionalism to support our children. Even IF support was in mainstream, what we saw of the attempts, showed us, they still segregated our children in 'annexes' and rooms apart from mainstream peers, so it isn't even integration on any equal terms. The image' is still of autistics being kept apart from the rest. Either you can operate an equal access environment or you can't. Just putting our children on the same school site, is NOT integration.

I think integration was just an excuse to close specialized support frankly. I cannot speak for others but my son has no desire or interest at ALL in anything integrational, and has told the system himself he won't cooperate because it is total stress to him.. There were numerous very heavy rows between us and the system, in that they suggested we were trying to keep him apart from others ! This was blackmail of the worst kind, but they refused him special education for years on that basis, until the 3 schools he was shunted to, said they themselves he should not be in mainstream at all. He was to them unteachable. Even when we used the legal aspect and got him special school placing, the extra curriculor support STILL demanded he attend integrated settings or, they would withdraw help. They said they were bound by law to do this, I said tell it to my son ! And went back to a solicitor who said SS could be in court for child abuse. Even at near adulthood residential supported living is based on him 'Integrating' with others, and it simply will not work on any valid level. Sadly there are austistic children for whom integration equals total stress. I threatened my SS AND his Dr with a court case to put a stop to integrated options, lie most parents we always hope our child can function on some level, but there are too some of our children who simply cannot. The analogy is a blind person being made to watch videos all day, but with no sound back up.

Just been told an advocate is coming to our home to speak to our son. It was requested because there was no agreed decision-making direction except from the parents (US), we know what our son needs and the 'system' seems to be at odds with each other and suggesting alternatives they themselves don't mutually agree with. Do advocates have any legal status ? i.e. can they overrule parents or professionals to suggest a different alternative would best suit ? Who are advocates ultimately responsible to ? Are they simply advisers to parents and the system ? with no standing otherwise ? I was told no professionals involved have to take any notice what an advocate suggests ? My son has poor communication and cannot excersize choices at this time, I am puzzled as to what an advocate can add to that, other than hopefully telling the current professionals to butt out and let the parents get on with it, and to support what they think is best. The advocate seems to have been approved not just because of the child involved, but because the system are at loggerheads and ignoring the parental choices and each other. One suspects the prime reason is because the SS/transition people prefer one residential option ,and the Consultant, who rejected the transition suggestion as unsuitable. At the same time parents aer going ahead to get further education sorted out which could possibly mean neither the transition option nor the medical one would be viable. Obviously the parents wants the best they can get, ergo it costs more,maybe here is the real issue.

My son is now 18 and they seem determined to not allow him to go to college but keep him at special school still. Had HUGE rows with the consultant, not speaking at all to social services, and the transition people appear to be at odds with their own policy. We have applied for a special college/residential placing for autistics, transition and Medical suggested residential accommodation locally, and currently we are sitting here with popcorn watching the transition people and the medical side slug it out while we apply elsewhere, it all seems rather ridiculous. We looked at local colleges and even they rejected them as unsuitable. By the time they agree on something I will have arranged it elsewhere without them, so why do we even need these people ? Because they sign forms that's all. They are not trained in autism have no organised program of support either, looks like if you want a job done well, do it yourself here ! We've replaced 2 social workers as incompetent, and now questioning if we need a second opinion medically as well, as the consultant appears to be favoring some private support area against the LA suggestions, and our own preferences supported by his school. . Regardless of the fact we as parents have rejected it already. because we want him in proven specialized education and care area, and not willing for them to experiment with care to see if it works ! The current local set up seems one for 'disabled' and 'special' needs but NOT autism,obviously they have been rejected as unsuitable and we are at an impasse, well they are ! we will carry on without them then argue with them after to sign the forms I suppose.

We always bear the brunt of any frustration or stress, no matter where it is induced at school or elsewhere. Perhaps he does these things because it is one area he can completely control the effect it causes, and the more difficult to address. We are hanging in there and hoping he reverts back to proper toilet usage via prompts and encouragement, we learnt the hard way the worse we can do is pander to it, as he then steps behaviours up a key more ! Why he would need to get more of our attention I have no idea, he gets 24/7 now.

It seems a relatively recent thing and on the face of it quite deliberate. He gives every indication he knows he is doing the wrong thing, but cannot be encouraged to do the right thing again. Having said that toilet issues go back to day 1. He wore nappies until 6 years old, he refused to use a toilet outside the home for 8 years even in school, he has complete control over his bowels and can hold off all day in school but his first port of call when he comes home is 15 minutes in the toilet. It took a few more years for him to use the toilet normally. We were defeated at school who tried to help because of his control over bowel movement, he simply said he didn't need the toilet there. Obviously at age 18 people won't go in the toilet with him to make sure he does things right which is currently the only way to ensure he does. He seems quite happy to see us all frustrated by it.... His current behaviour seems deliberate and aimed at us particularly. We are at a bit of a loss how to proceed....

It's an issue posing problems at present after many years of teaching my child how to use the toilet appropriately, to dress himself etc, he is now regressing to near potty training again and putting clothes on backwards, inside out etc. has all this work been for nothing ? what triggers regression ? He doesn't appear outwardly stressed any more than usual. if we show frustration he giggles and 15 minutes later does it all over again, but I feel it is more than just some sort of attention-seeking.. Unless he is monitored around the clock he will forget everything he has been taught, and appear to need constant reminding every time. As he is 18 the difficulty of attending to his need is now becoming problematic, he has virtually abandoned the normal process of using the toilet.... . I am thinking along the lines he is aware of impending adulthood, will be leaving his special school next year for good which he thoroughly enjoys attending, and wonder if he is consciously regressing for fear of the future ? I think his teacher is priming him for a future after school as are we, with great caution...but is this his reaction ?

I think the term 'disorder' is via the range of issues within autism, in that they don't all follow a set pattern, not that Autism itself was the 'disorder'.

I will NEVER take my son to an NHS hospital again to be honest, when my son had a breakdown they ignored us as parents, they didn't try to treat him, they shouted at us, and then they demanded we leave the building "We mend broken bones here,not minds..." I tried standing ground to get my son help they brought an admin in and they all said leave the hospital now or get thrown out, they told the MH Nurse who I called in to do as he was told, despite him advocating my son should not be sent home without support....so we left with no support and no treatment and were forced to use SS emergency help instead, they hadn't a clue what to do ! Only 3 months after did we get an MH Consultant in and they prescribed medications.....Although my son has a nurse allotted to him via education there is still no viable contact I could use if he had another issue, we can just hope the current medication holds but NHS ? no fear ! I was more traumatised than my son at the end of 35 hours of sheer hell frankly. I've never come across such hostility and ignorance in my life.

I just read this american report, which suggests the 'blame' for more autistic children should be put on older fathers, and advises them, do not have children after 45. As the blog stated, do we now then tell hearing parents not to have children at ANY age because 9 out of 10 deaf children are born to hearing parents. It is the end of life as we know it lol.....

My lad won't have any animal in the house, particularly dogs. We did 'loan' a friends well trained dog while they were on holiday to see if my boy would take to one, he near killed it ! by pushing it out of the front door at every opportunity hoping it would get lost and not come back, as it was he spent hours in his bedroom to avoid any contact with it. In the end and to save the poor animal, we gave it to someone else to look after, it lasted 17 hours in our home. A side issue was his mum wanted an assistance dog as she was deaf, but they refused her because the entire family has to welcome it or you don't get one. No-one but her wanted an animal in the house, and the boy was deemed an danger to it. Successive attempts by the special school to involve him at farms etc were all failures and just stressed him,he doesn't like animals so that is it. There issues between us and the school as they kept trying to get him to interact with animals, it was clearly upsetting him and causing a lot of distress. we called a halt to it, we had no choice.

After repeated failures to help my son access further education and are unable to identify appropriative residential support in my area,I yesterday had to notify them they were redundant and we will no longer be requiring their support. As a last resort they sent me an listing of support areas in FE, then said sort it yourself. I accessed the site and it could only identify 6 areas suitable for supporting an autistic 5 were in England and were rejected outright as we won't live in England, and the relative authorities anyway refused to fund outside my area of wales.. The sole college' available was one we had campaigned for for 3 years anyway, they got nasty (Transition team), and said if you want that option then you have to apply for it, and then come back to us if it is suitable, I had actually pre-empted their reply and applied anyway for an assessment which is the process since local support was viewed and deemed by all as a total waste of time. At present they say even if I get a positive assessment I still have to be nice to them or they won't help and demanded we send them financial details of savings. I responded in kind, "When you can provide or even identify viable service provision, THEN we might consider working with you, but as you have been obstructive, apathetic, and clearly failed to identify a local support area, we no longer feel you provide any useful purpose re support for our son..." Has anyone else ever had such obstructive responses from a transition team ? At present we are not speaking or communicating to each other, and I am forced to do it all myself. Ludicrously a college we were asked to view expected our autistic son to share classrooms with 70-80yr old sufferers of dementia ! maybe the best approach is simply to sue them as incompetent ?

This is why I object to charities. It is obvious such an considerable amount of support and backing parents and children alike require in depth, no charity can sustain such an support system. It is a case where I think the state should stop offloading charities onto us, so they do not have to honour their moral and ethical obligations to us or our children. In effect they are using charity to take the flak away from their utter neglect of us. Charity grossly underfunded and without professionalisms or training, just make a bad situation worse.... a report by the charity commission just out, said 50% of charities didn't know what they were doing basically, and their trustees were making things a lot worse.. I've cut links with all charities now. which means the 'be funny for laughs' TV effort just is rubbing it in, in my opinion.

I found no use for the NAS at all, I had hoped they would interact WITH my autistic child, but he ignored them totally and they made little attempt to communicate, in the end they visited our home to 'observe', my child just went upstairs until they went again, there did not seem any point in them, the person who came to my home sat watching the TV or an hour then went. They were never asked back. I get lots of post re seminars, but have no time to attend any of them, I think charities are a waste of time personally. They are too underfunded to provide support of value or, can maintain it, this is a killer, given our children depend on continuity.

Some do no understand the concept of white lies for sure. I never had to teach my son to tell the truth, he just comes out with it. I said to him once as he was discussing a rather big lady (!) on a bus I said "Don't talk too loud it will upset her, as he was determined to address her as 'The fat lady .." After a while, he said to her "My dad said I am not to call you a fat lady, who eats too much, but you should eat less... then you wouldn't be fat.!" He gets me in all sorts of problems ! he will just say what he thinks..... he gets told in school every day if you eat too much or eat the wrong things you get fat, so that is where it comes from.

I saw my son much the same early, on he would approach people after a while, but struggled to interact, the other kids made fun or pushed him, he never attempted it again. Basically he has no inter-peer skill at all, he isn't shy any more, and can come over a a bit aggressive but he would say boo to a goose really. I was on the bus the other day with him and there was a mother with a child sat opposite eating a burger or something, he leaned over and said "Stop eating on the bus !, you will get fat and die.." the boy responded by stopping immediately and his mother looked totally embarrassed, but stopped short of having a go at him, because so many others approved of what my lad said ! If he wants to say something he just will, he doesn't go with the usual social niceties, he has keep things tidy thing going on at present and will stop people in the street if they throw things away and tell them to put it in a bin, I think a job with keep Britain tidy would suit him down to the ground ! I can only hope what he has learnt from us is the basis of good behaviour, seems he tells other people how to behave as well ! Frankly as a young man, he is far better behaved than some 'normal' peers are, who can be rude, abusive, and respect very few others. Sadly his approach is quite risky, because peers attempt to hit him, and I have to step in. He doesn't understand risk management !

It's important to divorce shyness, and depressions and lack of confidence from Autism diagnosis, or even from people with hearing loss, as this too can affect social relationships, and 'fitting in'. I know people who prefer their own company and do not need anyone else's, and appear quite happy with that, not everyone is a party-goer or follower, some just lead, and others follow, and some just like dogs and cats not people, whatever suits their personality, shouldn't be a subject of "Are they normal or not, autistic or not..". Too many judgemental people about determining a norm that doesn't even exist.

Nearest they get to integration, in a mainstream setting. is the school address is the same. I'm fighting them now to prevent them allocating an local college place, it just won't work. he needs specialisation and more support than they could ever give, again, he would just be in some room apart from the rest, so what is their point ? erm.. it is CHEAPER. I am plugging away for an autistic college placement instead, either way I won't agree to integrated college placings. I've told them it not applicable to my child, and unacceptable to me. I won the last placing, I will win the next one too. Let them play politics with someone else.

I think the jury is well out. I have had so many issues with support and educationalists over the years throwing PC garbage at me about 'integration' and 'social interactions with peers' to last me 4 lifetimes, what part of Autism do they not understand ? Some of our kids simply do not relate properly to any other area on a meaningful relationship scale, at best it has to be on THEIR terms not anyone else's. If it isn't they stress or refuse. I think integration is basically the excuse they use to force our kids to take 3rd rate education in bog standard schools with an annex stuck on. Sporting activity was horrendous for my child, another 'concept' they deemed he would benefit from and 'mix with others', using 'team' approaches, of course doomed to failure at day one. My son has never done anything within any team. There were disabled children in wheelchairs, blind, some deaf, others with MH problems, children with no disability issue but problem parents who just ran around yelling at everyone, there wasn't a hope in years that would function for mine, and he went once and refused ever to go again. I had to agree with him. I asked any other brilliant ideas, and they said no, because integrated social areas is a law or something, tell THAT to some of our kids see how far you get. Frankly I don't with the best will in the world, see that putting our children solely in disability mixed areas like that IS integration, it is segregation, but realistically doesn't work.

The problem is no medical representatives now or politicians will back ANY Investigations into MMR or other vaccine issues, we are collateral damage, that's it. The way they plug genetics these days they can blame everything on that undermining any investigation or research, it's our genes, if not, it is our lifestyle/environment.... they have an answer for everything. I prefer the term excuse. It was never about money, we need to know.

It may be genetic it may well not be. Not really wanting to re-hash the MMR issue, but there is NO doubt in my mind MMR was responsible for my child's autism. I've read all the medical suggestions and none identified a genetic reason, when there is no recorded history in the families of it. One day my child was absolutely normal in every respect 36 hours after the MMR a virtually deaf/mute who couldn't follow anything at all. The only factor the GP could find was MMR, but after the furore took place and the medical profession driven by politics and fear of mass withdrawal from the MMR program, my GP clammed up and towed the official line, Having initially agreed MMR was responsible he then went into reverse, to say I felt betrayed and my son was, would be putting it politely especially when they then turned around and started blaming parents instead. Given my time over I would never have MMR again. Certainly not in the same way it was applied. When we asked for proper research into MMR or other vaccinations possibly triggering MMR in some of our children the curtain came down on that too. 4% of children taking MMR will suffer some issue, and a most of it neural and affecting the brain. It doesn't take much of a leap to link autism to some of that. But they will never search it, they fear the results, so concentrate on car fumes,fast foods, and genetics....