pleasehelp

Shell I think you may well have misinterpretted what I was saying when I responded to your original post tbh. I was not venting my spleen of anything remotely like that for that matter. The ONLY part of what you said I could really take issue with is the way in which you automatically jumped in assuming someone must obviously be looking for sympathy or wishing only to bleat which I do happen to think is a direct insult to the ethos of this forum which is after all supposed to be a place where people can come for support and information and yes to raise awareness-if you dont think it will make any difference then of course you are entitled to your view on that but I happen to think it will and I'll now explain why because I think it is so very important. I grew up in an extremely politically unsettled poor place-people did not have a pot to p1ss in for want of a better expression. A political regime claiming they had all the answers performed a military coup on the government and imposed their own dictate on the entire populus. Men women and children were butchered in their thousands-slaughtered and culled like worthless animals because they would either not subscribe to the dictate or take up arms and join the militias. I watched as half my family were tortured, victimised and killed. Our animals were killed and our crops destroyed so we could no longer support ourselves. Women had their breasts hacked off with machetes so they could not feed their babies and the babies themselves had limbs hacked off also-all just to terrorise people into subscribing to a dicatorial absolutist view. I did not speak for 4 whole years when those of us left finally fled. Now in that context I would like to suggest that had some busybody do-gooder type ascribed diagnostic criteria to ANY of the people involved I can tell you for free I doubt a single damn one would not have been described as autistic either aggressors or victims (I hate that word but how else can you describe it). As it turns out the select few dictators at the very top were quite happily lining their own coffers and living very comfortable lives while yes you guessed it the rest of the people still starved and lived in yet worse turmoil as time went on. They abused their powers and adopted the 'Im alright Jack' attitude someone described in this thread, took on an elitist superior stance that they were somehow entitled as the place it would seem owed them a living. The country is now at peace it also has to be said and people are now unafraid to go to the polls to elect a democratically chosen government who it is hoped will not rule in such a corrupt way. People have learned to forgive one another and do not centre the entire ethos of the country on profit and greed of the few at the expense of the many but again if those in power decide to take advantage of their situation they could easily exploit their situation and those around them. Soooo while I agree 100% shell that yes death is a part of life I do not agree that adopting a hugely callous selfish attitude (gee isnt that one of the diagnostic criteria after all?) and one where war and violence with no love or forgiveness for fellow humans is king is an acceptable one to take because it leads to only one place. As for altruism-I practice what I preach every day. I do not seek to profit from other folk as best as possible in the consumerist society we're in just now. I forgive others and try not to prejudge anyone at face value and support anyone who asks me for it the best way I can. Shell you seem very angry for someone who claims to be happy and at peace as per your CAPS LOCK rant. So at risk of being repetitive is there anyone else here who can reasonably agree that what they are seeing with their child is in any way related to trauma-Im only asking people to think about it and respond if they choose to.

Hurray we got there in the end :D You could not have summed it up better pragmatic and on that note I rest my case because this is exactly the point I am making We choose to ignore what is painful don't we and I think this is part of the enigmatic puzzle that is AS-is it any wonder sensitive souls tend to withdraw and display symptoms that we see in AS? Not really if you think about it is it. Sorry if I offended anyone initially with this thread-I promise you this wasnt my intention but I hope it helps btw it may interest you to knnow that following this philosophical approach we have seen ADHD symptoms in my oldest dissipate to nearly zero though Im still a little 'up' though I think its more to do with overdosing on caffeine to cope with my new baby than anything lol

Hi pragmatic and yes I know it's quite obscure but isnt that the nature of AS anyways? The reason I opened this thread was because I DO want to see what other peoples opinions are and they dont have to agree with mine-as Ive said its no problem really, as spectrummum has said she is at ease with the way she and her family are and that's cool-for the longest time I wasnt with either myself or my kids and it has been a very difficult journey but now we are and are a lot happier for it. Sometimes though it is very difficult to see the wood for the trees-I merely hope to shine a torch in the right direction and if that helps someone else out then Im a happy person-if not then Im still happy because it has certainly worked for us. Im sorry I have difficulty expressing myself in words-surely some of you understand that that is part of what AS is? Or not..... :S:S:S

I should also like to point out that the statement about our children 'not being ill' was not my own-it in fact came from an IPSEA worker FWIW and at the time I thought WTF as Im sure most of you did too, but on reflection I can see why it was said, I was just wondering if any of you here could see it too. I do apologise because I realise that it may be offensive to some-take it or leave it it's entirely up to you.

And OMG Ive just read the comments by Laz-look at the title of this thread, I have merely suggested that an open mind is a good place to start-how does that make me a hypocrite?? And at what point could you have possibly deduced that I am in any way arrogant or am in any way in favour of neo-nazism because I dared to suggest that there may be more to AS than meets the eye-truly sick and offensive comments if there were any to be found in this thread IMO (or am I not allowed one of those on this forum?) Maybe it suits the agenda of some here not to address some of the issues being faced by some AS families at the moment but it certainly does not suit me or my children that much I do know. There are some truly arrogant attitudes surfacing in this thread and I definitely dont think they are all mine

Well in that case baddad you may wish to reread spectrummums original reply and consider whether some of her remarks might have been considered as a personal attack?? Or maybe I just misinterpretted what seemed to be to me venomous comments for the sheer hell of it. Fine if someone does not understand what I have to say or does not agree that is something I have no problem with, but some of the comments were uncalled dont you think? If she doesnt think anything in this thread applies to her then why the vitreol?

Yes that's right ignorance is bliss isnt it :S I doubt very much you would see it that way if someone decided to take your kids into care or worse would you? Plenty of holocaust survivors could tell you what is wrong with taking the 'it's not my problem' attitude Im sure. Being AS and being ignorant are 2 different things and I dont think it's a good idea to use the one to indulge in the other.

Okay I realise what Im saying may still be a little obscure. Putting all this another way-down through man's ~(and womans) history for that matter we have been controlled by dogma of one sort or another, whether it be from religion eg catholicism, islam etc or communist ideologies-without it society generally tends to descend into chaos-I firmly believe that some of the worst chaos and extremist behaviour comes from ideology as it happens. Fear and greed seem to dominate everything we do. If we don't find a way to exist a little more altruistically then we will always succumb to these swings from one extreme regime to another and all that keeps happening is that social momentum keeps swinging like a huge pendulum from one ideology of how to reach some sort of utopian state to another and so on and so on. If we looked a lot harder for a third way-ie a more altruistic society we could go a long way towards healing ourselves and our children. PS In my previous post I mentioned trauma but this can be applied to many things eg environmental trauma (poisoning our DNA with the toxic cr@p that sits on supermarket shelves in the guises of food and consumables, emissions from cars planes etc. the list goes on but you get the idea), trauma from world atrocities which must then surely end up in our genetic make up (how else does animal instinct develop) and so on. Hope this makes what Im saying a little clearer?

Yes mumble you are on the right track, thank you for your contribution. Now, if our children are in a way more susceptible or naive or whatever you want to call it why then are they so badly persecuted by a system supposedly in place to help them? You only have to look around at what people like onlycrazygal is having to endure to see examples of this. How much of our kids problems do you think are attributable to trauma? Look at the mountain gorilla story-a simple bunch of souls, one of their babies was shot by poachers and now the entire family mistrusts humans and is acting 'odd'. All because they were not permitted to just 'be'. Humans are capable of some truly heinous atrocities, yes? If further proof were needed you only have to take a look at films like the Killing Fields as a great example of this. I for one have no wish for history to keep repeating itself yet it does and society seems to learn nothing-now ask yourself why.

Okay I see your point Kathryn-politics has no place in any discussion relating to autistic spectrum disorders OBVIOUSLY Let's try this another way-I think people here should take a look at new scientist this week, its available to view online for anyone interested in what is really going on-please be patient with me and thank you thus far for noone having jumped on this thread and trying to flame me off the forum

BIG BUMP Your children are not ill they were guilty of being born with freedom of thought and expression that is all, I love you each and every one but do not ignore my voice: [Edited by moderator to remove link]

Hi again to all on this board who can recall me and also to those who don't-I hope you are all doing okay and my thoughts are with anyone having a hard time right now. As an adult AS/ADHD person with 1 child same dx and another gonna be seen this month I feel I have to ask you people here to take a look at this link and tell me how much relevance and influence you think it has over the problems we face at present not least in education-your thoughts are appreciated http://en.wikipedia.org/wiki/Social_engineering

From bitter personal experience, I would probably say something along the lines of 'get lost and please refer us to CAMHS where my child stands a reasonable chance of appropriate assessment' though things may be different where you are. Unfortunately our paed was pretty much oblivious to the implications of all that I had observed in my youngest son literally screaming that he's somewhere on the spectrum. Sorry that's a bit on the negative because Im sure not everyone has this experience. Do have a good think about all the things that make your child unusual and likely to fit with an autistic spectrum diagnosis (or any other for that matter as a few other conditions can appear quite similar), just anything you think is pertinent really without appearing like you have made up your own mind already because this it would appear is their pet hate because many have an overinflated opinion of their own expertise and you are after all ONLY the parent and therefore an ignoramus-oh dear there I go again, sorry :S Seriously though list everything in writing in advance to refer to or if you just feel the right questions arent being asked in the first place you can give to them and ask that they please read if all else fails which should help I would think. Good luck anyway and if you dont get anywhere be prepared to dig your heels in for CAMHS referral instead if necessary.

Yep sounds like an Aspie to me alright Actually its quite common for serious drug users to appear like that if they're a) whacked out of their nut at the time and b ) got Hep from using dirty needles-Ive seen a few 'yellow' looking junkies for this exact reason. Stupid b*$&"�$^%s at the BBC!!!!!!!!!

I have to agree that the article can probably be viewed as being somewhat politically incorrect that's for sure. I think maybe the 'Neanderthal' link theory might well be wrong in itself but I do think some of the points made are nevertheless valid especially regarding the way in which some of our own 'autistic behaviours' do bare some correlation to those of earlier man who had in his/her various environments required a quite different range of 'skills' than those required to survive in modern society. Indeed modern society itself is a relatively new thing in terms of the development of human beings. It is for this reason along with the fact that there does appear to be an undoubted genetic factor in the passing along of 'autistic traits' I personally believe that evolution does certainly play a part in the appearance of autistic individuals today and how they can appear so socially different in behaviour to a so-called neuro-typical person. While I think the Neanderthal theory may be barking slightly up the wrong tree the idea that autism is carried in genes is most likely right though it would take some serious detective work on the part of geneticists to prove conclusively which genes are responsible and where they have originated from. Just to turn the political incorrectness thing on its head slightly, if it DID turn out that the roots of autism lie in our anthropological ancestry and in fact it is relative to a link to a certain race or sub-species of human then we would in fact have a very powerful defense of our rights already enshrined in the laws certainly in this country because if there is some 'race factor' involved one might argue that it is as racist to discriminate against someone with autism as it is to discriminate against someone because they are from Africa or China for example. Now that really WOULD set the cat amongst the pigeons if we could all 'do' our LEAs and schools for that lol

http://www.rdos.net/eng/asperger.htm One of the many things in this article which gave me food for thought was the 'Rhesus factor'. I am an O neg person as are most of my family and ESPECIALLY all the ones we now have a very good idea are or were on the spectrum and we are certain in our case that autism is unquestionably passed on genetically in our family-at the very least a lot of food for thought in there even if some of it might not turn out to be the case; its only theorizing for now but science may give us more answers in time

http://news.bbc.co.uk/1/hi/education/248810.stm Hi, I found this really quite old article relating to the couple who started their own school in London. They did have to remortgage their own home to do it tho It does say tho that the NAS had involvement which may be a starting point for making enquiries if you are serious. Seems like it would be a lot of hard work to raise funds but if you get lucky enough you might find somewere local to hire the use of a building as a starting point-from tiny acorns and all that...and the red-tape and bureucracy is the same for any school i guess, you will just need to have a head for getting to grips with that kind of thing. It may also be worth contacting some of the larger Independent school 'groups' such as Hesley because it may be that they can offer useful pointers on how to go about things and it may even be that 1 such organisation may be interested in a joint venture for anyone able to prove their own clout and ability to pull something like this off? Who knows but one thing is for certain as with anything especially relating to special needs if you dont ask you dont get; the worst that can happen is they tell you to get lost I have thought about the self-same thing on numerous occasions for our own area as the provision whilst good in some areas is sadly lacking in others especially because though we are lucky enough to have a good range of special schools for those with 'learning difficulties' and who are below the average ability for their age there is absolutely DIDDLY if they are not behind or indeed gifted and way beyond the capabilities of peers and just cannot cope with a mainstream environment-how ironic that some of the brightest people in our community are denied the chance of excelling and achieving their potential because the whole reason they ARE so bright is in part at the very least owed to the fact they are on the spectrum

Oh bless lol Fortunately my 11 yr old keeps his clothes on most of the time these days. In fact he's gone too far the other way and its getting him to CHANGE clothes even for bed sometimes which can be a bit of a task. My youngest son was worse for the not wanting to wear clothes thing than the older saying that though I have to say hes outgrown the worst of it now and keeps his kit on most of the time these days now he's 6 On a practical note have you thought of pursuing some help with sensory integration therapy which might help him cope better with wearing clothes for a bit more of the time? If you are lucky enough to get one a good Occupational Therapist might be able to come up with some good exercises and therapeutic activities to help with this. We had lots of stuff to do like rolling the oldest up in a blanket and unrolling him and lots of different massage of his arms and legs and lots of play involving touching lots of stuff with an array of different textures eg playing with sand, water and squishy dough, that kind of thing. Since as often as not the not wanting to wear clothes thing is related to the not liking of certain feels and textures it could well help him to cope with wearing clothes more of the time. Being on the spectrum myself I can tell you its sometimes very hard as an Aspie to see why a certain behaviour might not be a 'socially acceptable' thing to do and it may take some repeated spelling out on your part that fun as it is for him he cant always do such things as it could get him into trouble one day life being the way it is sadly. Hope this helps some.

Yes, yes, yes. My oldest dx son always walks on tiptoes and he's 11 now. He has always found walking any distance very tiring and difficult. Looking at his feet they are not what one can describe as normal and altho he doesnt appear to be too flat-footed he has what looks like undershot heels and his feet are generally an odd shape. I am undiagnosed but no question of whether I am on the spectrum and comorbid ADD and I suffered the same difficulties walking throughout childhood finding it very tiring and painful to walk long distances-I used to be in tears when my less than sympathetic mother (but thats another story) used to drag me round town at 90mph :| My youngest undiagnosed but equally unquestionably on the spectrum son (pervasive and well-behaved in school so finding any kind of recognition for his difficulties impossible to attain until i win the lottery and go private) also complains a LOT of leg pains and tires easily and again doesnt like to walk long distances. As far as I know it is very common for ASD/Aspergers children to walk on their toes and I have no doubt that there are quite obvious physiological differences between us and neuro-typs besides the usual array of differences in brain function. It will be very interesting indeed to see when someone is actually able to make the correlation between the two amongst the ranks of the medical profession-to those of us living with such things its as plain as the nose on your face yet so many seem to have the same problem even getting any kind of recognition of the fact let alone its relevance in the scheme of things sadly

Hi there and sorry to hear you are having so many difficulties in getting what you feel is the most suitable provision for you child. If it helps we have gone down the route of finding a special residential place for my oldest son and found that it helped us no end to actually approach some of the schools we thought would be most suitable and go and look and speak to them too. They usually have a very good idea of the sort of children they provide placement for and can probably help no end in specifying what it is that they can offer your child that mainstream cannot and this is pretty much what you need to be armed with to take the matter to tribunal apart from budgets costs etc because the money side of it should be a secondary issue to that of needs being met (tho we are all too painfully aware it as often as not doesnt work like that). These schools will invariably have a number of children there who's parents have had the same difficulties getting the placement so they will have a mine of useful experience and advice to offer and it will help no end if you can name the exact school you want and pitch for that rather than just saying you want a special school place in more abstract terms. Gabbitas net is your best port of call for finding out what is out there independent wise, look at as many as possible so you know what's available then you can not only see for yourself the alternatives available but you can see exactly what they do that mainstream dont which will hopefully help strengthen your case should it get as far as tribunal which in our case it didnt once the LEA realised we had all this info besides anything else to back us up. Hope this helps and best of luck x x

That bugged me something rotten too. Yes I have to say I found the end quite patronising and wishy washy-more like the Waltons than the Jacksons really, and I can see why Jacqui might be just the teeniest bit miffed by it. Nevertheless it did go someway to shining a light on the kinds of problems we all have as families with autistic children to those who have absolutely no clue whatsoever-however, the worst problems I have ever had to deal with are not from those who have no idea at all NEARLY so much as those with some limited and very preconceived ideas about what autism is and then think they know it all when patently they dont really have a clue, like the preschool manager we encountered who told me 'oh yes I know all about autism-they're the ones that cant talk arent they'

Well I WOULD be watching the original documentary now only my freeview is broken owing to my 2 luvly autistic children-oh the irony lol Have to say i thought the drama was a good portrayal of autism without labouring the issues to greatly-altho i wish i could casually say 'oh another year another round of assessments, as long as they get their statements and XYorZ gets their disability' as tho its somethin you do standing on your head

Ah yes and lets not forget the fossilised turtle sh*t (gawd can i say that-well i just did anyways lol).....truly astounding what people will bid up to ridiculous amounts for and never ceases to amaze me

Thank you all for your replies. Phasmid thanks so very much-having read Nellie's post on this I thought it looked like they might have this 'loophole' as you have rightly pointed out and yes I was certainly not just going to move into a different area without having checked out the education situation for my oldest ds thats for sure because he has had such awful difficulties in the past and I have no wish to retread that path for either my own or his sanity's sakes If I thought for one minute that the unit might be suitable then of course i would gladly consider it especially if it meant that he didnt have to go away to school but sadly i doubt this most sincerely as he has such profound and complex needs which if not met i fear will be the difference between him making a successful transition into adulthood and remaining dependent on help from others for the rest of his days. The really shameful thing is the inadequacies of what the NHS offer in this respect too hence the burden is left instead to parents and LEAs to find answers and appropriate help for our kids too-its a truly woeful situation and i really do realise how lucky we have been in finding the placement he has and gettting the funding for it without having the added trauma of the tribunal in our case too, so I'm not about to throw away all that good work so looks like we're stuck with where we live for the time being-ah well, worse things happen at sea i guess ETA: Am LOVING the stick insect piccy in your avatar-I became an 'accidental' breeder of the infernal creatures as a child and spent many a morning stood on a stool picking little sticks off the ceiling before school, cos the little beggars somehow always used to escape

My son has a statement and a placement at an independent residential school which while not absolutely perfect is probably the best we could hope for given the degree of his difficulties especially in relation to his behaviour associated with ADHD which make him very hard to keep safe and from boiling over in a normal mainstream environment. He absolutely CANNOT cope with mainstream at all and now we are thinking of moving to a different area and LEA they are insistant that they have an 'Autism and Speech and Language Unit' within a mainstream school which is where they would want to place him. Can they refuse to continue funding for his placement even though it has been named on his statement and the evidence included that we have from Ed Psych etc supports his need for a therapeutic environment quite different to mainstream irrefutably?? I am so very worried that this unit would not be able to cope and then we'd have a mammoth battle on our hands getting a place back in somewhere that is appropriate to his needs. Any ideas on whether this is actually legal or not would be very much appreciated indeed.