MelowMeldrew

I Perhaps see things slightly differently as I don't accept Autism is an mental health issue, MH Issue is an further complication that can happen to anyone really, but I don't see autism that way, I accept their difference and the fact autism is their norm, I'm not saying it is easy to manage !! At least some psychiatrist has made some attempt to find out what is going on even if they don't understand joined up thinking, but I haven't seen that yet. As recently as last week at an agency meeting, the school and complained the others never worked with each other, in fact only myself as a parent was interacting with them all, and was having to update them all too...

Mine has been with the psychiatrist since September last year no therapy or counselling or real attempt to find out what triggers things has been done, its just 'are the tablets working ?' Unless we have some idea there is just no way of preventing more issues is there ? Then I find the classic put down being offered aka "Oh lots of Autistics are the same and do that...accept it.." When I've attended the school and found that was NOT The case... whilst some traits are similar every child is DIFFERENT.

This is a worry, increased use of medication with my son is depressing me ! I am not sure if in a permanently state of being zonked out of it is how I want my son's need addressed, are there alternatives to medication ? I was under the impression anti-depression tabs were ONLY short-term until the cause was ID'd or other means were employed to assist the user coping with things, not as the sole solution ? I've asked for assessment and counselling they only seem interested in medication... are the medical people just being lazy ?

We don't USE our GP at all, he is pretty useless, so he just signs prescriptions nothing else, everything is done via the consultant who we now see every few weeks... I will certainly ask about alternatives. I didn't at the time because I had to read up on medications and effects, the medical people do not always tell you everything, Citalopram had a very negative write up from its own manufacturers all sorts of dire warnings and no stated safety data. It raised more questions than answers, in that either the Doc is not reading the manufacturer descriptions, or, our son is a lot worse than she is saying in using medication intended for adults. Either way I see her again next week and she will get the 3rd degree... I won't put stuff in my son's body without knowing why or what it is. As far as home schooling this just isn't an options, I fought 7 years to get him in special school, 2 years time they will all abandon support for us and him. Next week an 'agency' meeting is not going to go as smooth as they expect. I will be asking the school if they will STOP offering care at school so I can ask for clinical care instead. Our son is not receiving anything educational and is being taught in virtual isolation as it is, so whether home education would improve that.... I am grateful for the school help but the medical and SS areas are pushing the school to do their job and this is preventing real help coming in my view. His mum and I are very concerned he is receiving no education at present and they have abandoned further educational options already. I don't fault the school wanting to help, it is a question of is it the right thing they are doing, for us or our child.

Not taking them myself, the Doc has suggested my Son take them because he isn't coping with school the home or outside on the street.. and seems permanently stressed. He is already on Risperidone and there is cross issues with Citalopram isn't there ? He's really bad at present, school seems pointless at this stage and for all intents and purposes just a day centre not an educational establishment, I am quite angry at this situation because it seems to me the Medicos and SS are dumping the care on the school in the day time and medication at night whilst no-one is really attempting to offer therapy or clinical examination to get to the root (If possible), of the problem. The school is doing a lot of care but apparently NO teaching of educational academics. I think it is time I called it... pull him out of school and insist on clinical intervention (Hospital ?). I'm loathe to do this but it DOES seem they want him in a total breakdown situation before they will act or offer real help, which from my view amounts to cruelty. At 18 they will dump us anyway..... I've attended 13 agency meetings since xmas and absolutely nothing has come from any of them, so I refused to attend any more until they start offering..... I've better things to do with my time they keep them in waste paper writing useless reports.... If he quits school NOW (Age 16), what options are there ? all have agreed further education (College etc), is no longer an viable option... the prospect of work is ludicrous.... his social worker is as much use as a chocolate teapot, and is awaiting 'advice' from others who are offering none. Even the NAS has backed off because he will not cooperate on any level with them, so 'respecting' his space I suppose it is one in the eye for the inclusive aspect, it is never going to happen.......

Citalopram, my son has been advised to take this, but after reading the enclosed advice leaflet, which said he shouldn't be getting it as he is under 18 and there is no safety data available, I have decided not to give it to him but to go back to the Doctor for more detailed advice. The Doc said in certain circumstances it is OK to give this medication to a child under 18 (Mine is 16), the leaflet was horrendous reading from my view and all but advised patients not to take it ! HAS anyone here had any experiences of it for under 18s ? ALl the advice stated it would exasperate the symptoms he had already, I'm confused... and worried the medication will actually MAKE him more ill than he is....

I think mum has been in denial since he was born really. I seem to have accepted it immediately, she always used to say when it got hard "He will be OK in a couple of years just learning a bit slower..." as if autism will cure itself when he is older ! Numerous attempts have been made to explain autism (In as much as anyone has an idea what it is), but she seems to struggle with it. I just love my lad as I do his mum, so will do whatever it takes... I am trying to talk her into allowing more outside support, as a way around the situation, but its hard going, and have to be careful not to alienate Mum who may think I want him elsewhere, which isn't the case at all. I explained he will never attain any sort of independent as he is capable unless we unite on the basics. She seems to be doing more for him now than when he was much younger, I am thinking the lad is 16 and she is frightened he will be too independent to want her. It's one for the Mum's to answer I think. In my opinion the day he says "I am off out to play with my friends.." I'd be shouting hooray in the streets... I often feel it is never going to happen at all

Seems clear to me he didn't want the sandwich at all, just wanted to control his Mum. He is quite capable of doing these things himself, but chooses not to. So its a control thing in my view, from his school reports he is manipulating his teacher too, who really should know better, I had a row with her recently about disciplines, she say the guidelines prevent her enforcing it. He has Mum on his side which makes it difficult to lay down the rules because he will go to her and she will do what he wants. There is no balance at all really, he can often adopt the stance of refusing to wash, feed himself, put his clothes whatever now... I find his mum is the weakest link and he knows it... I feel often I am the only one attempting to get some independence from him. Up until 14 yrs of age we never had these issues, all of a sudden puberty kicked in and now we never know what he will or won't do next. He could easily just stop feeding himself and make his mum spoon feed him.

My initial response to it was OK make it your own your way or go without, but his Mum waits on him, so I suspect he was fighting against me by manipulating her. He is 16 and doing this more and more now, so looks like a teen angst thing. He is running the school ragged at present too, by picking and choosing what level of cooperation he will give out or participate in, 60% of the time they are teaching him apart from the rest too. I feel at present I am the only one laying down ground rules, with the school quoting guidelines as to why they have to let him do his own thing.... I believe it is a matter of discipline at the present, and I am the only one taking responsibility for it. He has to learn he cannot always have his own way. It's not about what his autism dictates, it looks like Dad v son... I take my own advice in that I don't confront as this makes the battle joined, but it is made clear basics he is capable of doing, I expect he will do them. He has learnt that a few tears to Mum, Dad is zeroed...

Son of blew up again today, he asked for sandwiches, his mum made him some and he went wild, said his mum had cut them diagonally instead of making 4 squares as he usually likes, except if dad makes them diagonally that is OK, but Mum isn't allowed. She made him another set this time with squares, he went mad again said the plate looked different, so it was put on another plate and then he said he wanted them binned.... who got out the wrong side today ?!!! He cried for an hour after as well...

If being single-minded is Autism most of us are..... It's these blurring of distinctions without further information that casts doubt on Autistic diagnosis. As stated elsewhere Deaf people were said to be autistic because of their lifestyle, when autism had nothing whatever to do with the way they lived. Autism is a lot more than a communication issue.

I was concerned at reading the new way of assessing children with special needs. Whilst having just ONE assessment seems better than dozens (Or even a 100 one woman went through!), the government said they wanted to REDUCE the number of children labelled as special needs. A woman on the BBC news said we NEED the label Autistic to ensure we get support from experienced people. I can echo that, because my child was put in 'special needs' in mainstream school and they gave up after 4 months. There wasn't a single tutor or support with any experiences of autistics. You just do not lump all children with issues in one place. This is presumably another attack on specialised schools and to reduce support in mainstream ones. Autism can progress and make issues worse for our children, if they only have the one assessment, how can we campaign for increased support when things change if there is no continuations of assessment, our children's needs change. It's like an DWP letter sent to a deaf friend of mine, who was born deaf they said "Can you hear now....?" He said "With no ear mechanism, highly unlikely !!"

I know what you mean about rigid thinking ! over the half term he insisted we 'go on a bus' every day and even 3 or 4 times a day. The issue for us is he doesn't care where he goes so long as he is on a bus or in a car, any attempt to actually GO somewhere to DO something is met with a rigid no. There is nothing at the end of the journey, as the journey is all he is interested in. As regards to Diazepam he took it for 4 days and it created total mayhem and anxiety as well as anger in him, it was stopped immediately and is not recommended with rispiridone. . Medication was also something I totally opposed, I have never supported medication and insisted on therapies, however, I had to admit defeat when nothing worked and he deteriorated. I'd never advocate myself an easier life by drugging him out of his, the fact was he wasn't coping. Rispiridone IS an anti-psychotic isn't it ? My issue was the Dr had not examined my lad to determine this, he was just responding to the behaviour exhibited, which may or may not be psychotic at all, since he could not define 'norm' to me.

Absolutely no doubt my son has MH issues as well now. As for short term rispiridone usage, his CAMHS Dr said 2 YEARS, it is why I pulled the plug on it. I wasn't prepared to carry on like that until an assessment was done as to WHY he needed medication. All they are doing is trying to treat an effect without knowing the cause, which I said looked irresponsible to me. His Dr also seemed confused about what MH was and what Autism was, there was an assumption they were the same thing. I said definitely they are NOT the same thing. His psyche dr has also avoided actually interviewing my son too, since the first time we tried he exploded and wasn't allowed into the building. He has avoided his responsibility as his Dr I feel, he specialist will also NOT have her own way either I intend to ask very pertinent questions. My son will just get one shot at this. If I can't get the right support, they will just leave him, and us to it. You'd get better help in in the 3rd world and with a witch Dr frankly.

My son sees a specialist next week, Rispiridol was prescribed 8 months ago, today it has no effect at all. My boy may well be referred to hospital for clinical examination, its a nightmare, and he is depressed, angry,not sleeping or sleeping any hours of the day, explodes, talks to mirrors walks around in the dark all night cries for no reason, is in a class virtually on his own even at special school. My first question to the specialist will be why risirpidone was prescribed ? I Know what it is supposed to address, but do NOT know what triggered the whole thing. Is it usual Drs prescribe medication to autistics without a clinical examination ?

There are obvious 'degrees' of autism, haven't we all been cheesed of with the 'rain man' comparisons ? Simply to identify those who are at the high end of dependency would help support and care service provision estimate what they need. So it is in the deaf world anyway. There may be 9 MILLION with hearing loss in the uk but only a few 1,000 who are utilising the services to a high degree. In autistic terms lower percentages need specialised schooling etc. There has always been a pecking order, the NHS/Care system operates no other way, so applying a realistic 'title' helps ID those most in need. It's not widely welcomed even in the deaf world but it IS accepted some have a higher degree of need than others. It's not about saying who deserves support more. Of course the system categorises every day !

Whenever I see labels used I just think... they will run out of jars soon.. the problem will be when they start playing the numbers/statistics game, then we won't know who is deaf or who is blind or who is autistic, everything will be lumped together under 'sensory'. When they did this years ago to the deaf they rebelled and demanded stand alone descriptions, because of statistics just being unfathomable,as well as being counted as many times as there were different 'sectors'. Deaf opted for (D)eaf and (d)eaf, a very subtle difference that redefined an entire sector of people. At least we know who is what now ! Perhaps we will have (A)utistic and (a)utistic..... that is those who need 24/7 support, and those who don't...

The old adage it aint what you know it's how you apply it counts too.... A number of autistics have considerable memory recall, but are simply collecting facts for its own sake, not applying that knowledgeable as such... So some can do the rubic cube in x amount of seconds.... and ?

Since we had our autistic son I've not met a single medical 'expert' who has any idea what we are dealing with, even dispensing medication without ever examining for an reason. "Oh that's autism..." what is ? Seems everything they don't understand is down to Autism and then, they can't describe what it is.... they are refusing to look further for other aspects that may trigger serious issues we have to face, not everything that happens is down to Autism... It's become an excuse to do nothing, and worse some opportunist parents are using autism as an excuse for their spoilt child's poor behaviour and their own non-extant parental skills... Nursery schools are reporting children turning up unable to speak properly, or communicate or relate to others properly, are violent and aggressive, because from day one they were sat in front of a TV and left to it... these children are NOT autistic.

I think the current tendency to attribute faulty gentics as a cause of everything, is unhelpful and useless without fact to back it up, whilst DNA has been ID'd the gene interactions HAVEN'T. There is an concern everything is being written off as 'in the genes'.... to take away concerns environmental and immunisation issues may also contribute. Indeed may be the sole cause, not genes. I'm constantly astounded at the flood of imminent cures once they can mess about with the genes and put them in the right 'order'. Who is going to decide which is the right order ? Forget someone dropped you on your head when you were small, your great great grandad 50 times removed was very single minded....DOH ! If everyone was autistic bar 2 people who would have their genes altered ? yup the odd two....

Where is the proof of inherited Autism ? is there a DNA link ? what ? as I am aware GP's don't do that test, what would they be looking for ? I do family history for a hobby and have done for many years and NOT found any relative with autistic symptoms, whilst I haven't fully researched my partner's history so far nothing there yet either. What ARE the symptoms anyway ? most have been shot down as far too vague... aka 'loners', 'shy', 'single-minded', tick whatever box you think you are in and it can apply to everyone. If they knew what caused Autism there would be more research into alleviating the worst aspects of it based on a fact... not on an assumption. No one cause... whatever, if they include any more guesses (Or read the tripe from America), the whole area of research will be meaningless.... We are all autistic.

Many cases of issues with vaccinations are accepted by the medical profession, there is no 100% with no side effect and collateral damage is accepted risk.... Some people WILL react badly to MMR or any other vaccination, NONE should be given without at least ascertaining the risk factor. I find the program of vaccination is haphazard and blindly undertaken at the GP, the swine flu jab e.g. was panned by doctors and nurses alike at the onset, 40% of nurses in the NHS refused it at the time. Mainly because they weren't convinced it was trialled enough, but they still demanded we take it. IF MMR triggers autism in some children then we need to ID the factors that do it, that means proper research without state hysterics no-one will then take it up, so shoot the messenger, and halt the research. We have to be grown up about addressing concerns, and grasp the nettle, perhaps if the media didn't enjoy scaremongering and acted irresponsibly we could do that. It is medias that are preventing advance in research,b y their Frankenstein column inch approaches...

This MMR link rumbles on doesn't it ? I read recently the system has again gone at the Dr who suggested a link and determined to prove he is a fraud and all sorts. Methinks they protest too much personally. Even the flu vaccination has many detractors and a lot of non take up, people have lost confidence in vaccinations, mainly because side effects are rubbished, and concerns not listened to, but people do not just take the word from the medical profession like sheep any more and will question, if these questions are ridiculed it invites non take up, silly and dangerous too. Sorry Doc you are going to have to spell it out....

Since my son developed problems for increased anxiety, he has ceased to use any game computer system, they set him off so have been removed from use. We now use an ipod with quiet music on and that seems to help immensely, but games are now out. We were told it was thought he was developing an fear of animated characters or colours !!! I've never heard of this before...

My son has no actual desire to interact with anyone, it's not an 'issue' to him to not form relationships, but his norm. Why must we assume people who don't want to form multi-relationships with more than one or two people are lacking in something ? If you can mange as I do, to do it for years on end with 2 or 3 people, that's more than most isn't it ? Some are party animals some aren't ! The danger as always is to try to equate what your child does with what 'normal' children do. At least my teen age son is NOT on drugs,getting young girls pregnant, spraying graffiti on walls, bullying others, or getting drunk every week... let's count our blessings...