LancsLad

But how many of you recognise your children, partners, family, friends when they are in your home with you? Do you walk out the room come back and have to go "woah, who the hell are you?" or not? I was just about to say I am not that bad but then realised. When my eight year old invites his friends around and there are four of them sat there all playing Skylanders or mario cart on the wii, I do have to have a good second look. I have not thrown the wrong kid out yet but you never know. I agree with your systematic approach Darkshine. When I was a teacher it was far more complex than that. Because I would include their work in it and how they behaved because they all had school uniform which was pretty similar, the kids thought I knew them really well and in a way I did because I had to make a big effort. In large secondary schools office staff would come to me and say this was handed in whose coat is it and I would often know, because it was one of the things i would track the kids with. At the time I didn't know I had a condition about face blindness I just new that is how things worked for me. If anyone else with the condition wants a good tip always go for really tall or short partners, I went for a really short one. This is good advice because it stops you from kissing the wrong person at Christmas parties when you are a bit drunk and getting a slap in the face!

Thanks Justine. There is absoulotly no way on earth that the shape and size of someone can possibly indicate that they are healthy. However there are sizes and shapes which would deffinately indicate someone is unhealthy. As soon as we put the size and shape as an important factor what we are doing is prioritizing an aesthetic look over a healthy body. We say form is more important that function. If that is true then go out and buy a good looking sports car knowing it has failed its MOT despite numerous inspections and the experets believe it is a death trap or at best and accident waiting to happen. I doubt many people would put form over function in that scenario just to look cool. So lets have a level of consistency please and not say peoples bodies follow different rules in life as if they have no real inherent value.

I have 'Prosopagnosia' to the extent I struggle to pick out my son when I pick him up from school and there are just two or three kids there. I have lost a battle today because my partner insist he goes for a hair cut on the way home from school. The fact he took scissors to it himself over the weekend highlighted democracy should rule. I really like his 'mad scientist' hair style and he does most of the time because it goes with his cool BMX racer look which he has cultivated. I like it because no one else in his school hasd hair like that. When I pick him up tomorrow I will be stuffed. How I wish we had the 'ginger' gene in our family life would be so much easier. I think the answer is just accept it. When I am stood at the school gates looking blank trying to pick him out he says to his teachers "that's my dad he hasn't got a clue about spotting me". As such the teachers know. In fact a lot of people know. I can go to pick my partner from the train station and decide to stand on the platform and she will be able to walk up to me and be right in front of my face and say "Hi". I will jump a bit then recognnise her voice and thing oh yes you are the one I have been in a relationship with for 27 years! Now I can guess this might ###### off a few people but if you know me its just part of the package. What makes this more difficult is when I say things like I saw you today just after dinner time, and they ask where. "Oh you was driving the other way up the motorway passing a blue lorry in the middle lane at about 1:21 pm". So if you want me to recognise you tell me what car you drive, what shoes you wear, if you have a ring on a finger, have a tatto, and I will find you every time, just don't send me a photo.

As you ask 'all think' I will give you my honest response SmileyK, size 8, size 10 size 18 or size 24 it is all irrellevant. Having said that I will tell you what I think is relevant in my life. I had to go to the hospital about 18 months ago following a serious bike crash and the nurse took my pules and then took it again as she thought she had made a mistake, her response was "sorry but you are really fit (don't think she was talking about my good looks and fancied me by the way) we don't normally get people like you in". I am 47 years of age my resting pulse first thing in the morning varies between 42 and 44 beats per minute. Earleir this year I went through an MRI machine for a body scan. The surgeon explaining the possibilities of a back operation to me said "it would be a real shame having to cut through all that muscle tissue because it is really top rate you can see you exercise really seriously". Last year my GP was concerned I had prostrate cancer and sent me for blood tests and when the results came back he said "I wish they were my numbers they are spot on all except white blood cell count and that is as a result of your trainning regime and would be expecteded". When it comes to things like contsipation and diarrhoea I never have any issues at all. The thing is if I am interested in anything it is not my size or what I look like it is my health and fitness. I could for example post a couple of pictures of my naked body on the forum and ask people what do you all think, but what would be the point. Its not what it looks like it is what can it do. I go to my local gym five times a week to swim I am currently swimming about 10,000m a week. I see loads of people in the changing rooms looking at their bodies trying to make them perfect in contrast my own body is a bit of a shambles. I have skinny arms and muscly stringy legs. There are stupid tan lines and scars all over my body. There area a fair few stretch marks and the odd love handle or two. My face looks battered by the elements and in recent years I have contracted grey hair disease and my hairline is starting to receed and a bald patch forming. In fact it is anything but perfect but I am happy with it and with good reason. The reason my body looks like it does is because it is a product of my life and because I am happy with my life I am happy with how my body looks. I know it may not be up to the standards of the body beautifulls in the gym but what I also know is that when it comes to swimming, cycling and running compared to 99% of them I could completly kick their butts if I had to. But that doesn't matter to me what really matters to me is that I also suspect my resting heart rate, internal body composition, blood levels and digestive systems would kick theirs as well which means when it comes to health and fitness I am pretty much on track. What we see in life all depends on where we stand to look at it. What I would say Smiley is come back and respond to what I have said. When you ask for all opinons dont just then pick and choose the responses which you like the sound of and which agree with your own opinions. If you disagree with me come back and say why because like Mannify I have taken time out of my life to answer your question please respect that. Just a few thoughts.

First off great idea for a post Ben but this old dog tends to disagree a little bit and would rephrase your thoughts a slightly different way. What I would say is you have to know when your hand is good enough and take the risks because that is how we learn. I think a lot of people would have a good idea what constitutes a very good hand and they might know what is a terrible hand but the majority of hands in life are simply not that clear cut. I think a big mistake many people make is they believe everyone elses hand is going to be stronger than their own and so they back down far too easily and throw their cards in. I agree that being pig headed and battling away when things simply just do not work is stupid and it makes sense to save your energies and direct them into other projects. A lot of the time I would say my biggest successes in life have often come from a tricky start. Very often we are not too sure what might be involved in doing something at first and as such we fumble around and make mistakes which is never nice. But by doing so we start to understand what the game is about and start to look at the strengths and weaknesses of people around us and learn from experience. If I had to describe my approach it would be even when the hand looks weak I would decide to hang around for a bit change a couple of cards and see what the reaction of the other players is because a lot of them might just fold in that timescale. At that point you may decide a couple of players look very strong and fold. For sure hanging in for another round or two has cost you a few chips. Personally I would not be down on myself rather would say I have learnt important things by hanging in for a bit. The secret of course is not to gamble big in such sceanrios but keep investing at a steady rate. From an autistic perspective this can be difficult because often I think in black an white terms, all or nothing. It takes quite a bit of discipline for me to hold a bit back to try and play the game at a steady rate if I am not too sure. When this old dog was younger he took big risks and would put everything into projects and gamble away, sometimes it paid off sometimes it didn't. As I have got older I wouldn't say I have become risk averse and catious rather I am a lot more calculating and might think a bit more, after all experience has to count for something, but we have to be prepared to do things to get it in the first place.

I have to agree with the previous posters. My parents were asked to fill in a questionarire as part of my diagnosis process as an adult didn't have a clue about As and haven't been interested since. It would have been the same when I was a kid. If you want real answers direct the research at adults with the condition I may be 47 but I can still remeber what I felt like aged 14 to 16 and know exactly what i was doing at the time. If anything I could explain my emotions better today than I could have then.

When I read this I got the impression that the NAS has pulled the ripcord to release the parachute 20 years after hitting the ground! I think that is the best line I have read in ages, laughed my head off and yes I think you are right on that one Canopus. Maybe it is muscle reaction as rigormortis sets in.

Special-Talent I want to say something which in many ways supports your own position but highlights the real issue here. A few years ago we had the concept of 'autism' within our society which as a teacher I understood and worked with. I would go into special schools and work with kids I understood to be autistic. We then moved into a slightly different way of thinking and that was there was in fact not fixed conditions with slight variations but rather a spectrum of symptoms which in varied and often complex ways grouped together in patterns indicated levels of autistic traits in individuals. In effect what I and many understood as autism became 'classic autism' and that was not a point but zonal area on a braoder spectrum. Where I disagree with you Special is that the majority of individuals on the ASD spectrum are in fact Aspies or high functioning autistics, thouth many tens of thousands of them are as yet undiagnosed. When it comes to diagnosis I suspect Aspies may well now be the majority. When it comes to funding allocation they deffinately will not be because the needs of individuals on the classic end of the spectrum are so much greater, or so existing systems indicate. In my opinion if the NAS had focused on simply being a charity which supported parents who had children within the 'classic' range and then supported them with residential care into adult life this debate would be very different. What has happened is they have portrayed the fact they support the idea of a spectrum but that does not really ring true in reality. What they have done is moved their line of support along the spectrum. In doing so it may be the case that the line has moved past the point where someone such as yourself is placed. For you that is a good thing and I am pleased you recieve support from the NAS and believe you get a good service. In reality if that means individuals who would have failed to meet the criteria for classic autism recieve support then it is a good thing and I am not against that. What the NAS should do is simply say we have limited resources and can only do so much and we do so on a needs basis. But it is more difficult than that someone high functioning might be unemployed trapped in a run down bedsit in a neglected seaside town struggling to exist on basic benefits and have serious underlying mental health issues many as a spin off due to AS, so what are their needs. And I suspect in reality there are as many people living that sort of existence on the wrong side of the autistic support line than there are with identified needs on the other. My argument is the NAS do not see it as a fine line rather a mirror to look back at themsleves and that is why there is so much frustration out there. The national association which claims to support all our interests is in denial about the reality of autism in this country diagnosed or not. If you are on the right side of the line you might have a reasonably good experience. The danger is people on that side of the line start shouting about needs and that theirs are greater. Needs are in reality related to the environments we have to survive in. Whilst someone for example may have classic autism their needs might be great in terms of say physical care of themselves but many individuals at the opposite end of the spectrum have needs just as severe through behavioural conditions and mental health issues such as depression. A lot of the time I think the concept of the spectrum isn't working in practice. I know this is the case when people drop the idea and start throwing around badges rather than symptoms they experience in life. I believe we are about to enter into an area of badge throwing and groups such as the NAS will have to decide which badges allow membership to their club and which ones don't. It is my belief they will decide AS will not constitute mebership simply because it is too big a potential group and they would rather remain exclusive in ring fencing finance for their existing professional services. The best many with AS can expect is a bit of old hat information here and there.

Indiscreet thanks for the quotes from the NAS. My initial reations are as follows. Autism-specific services that have tended to concentrate more on the needs of children and younger adults are now faced with the challenge of extending their reach to cover older adults. You could interperet this statement to imply that the NAS thinks that adults of say my age need the same type of services as 14 year old and that an extension would surfice. For me if this were true it simply highlights how narrow minded they are and fail to grasp the fact that as a developmental condition we change and develop as individuals whilst at the same time the scenarios around us move on and develop as well sometimes in very complex ways. As such there needs to be different approaches adopted for adults. It also implies a bias towards seervice providers as facing the real challenge not those individuals with the condition who face challenges every single day, so who do they think they serve? create an online support system for brothers and sisters of older people with autism I feel this is another example which highlights and in a way promotes a needy culture where the family is seen as the catalyst for change. Whilst some people on the spectrum may well continue to live with their imediate family I suspect the vast majority will move away at some point. Again this is a reflection of the NAS simply extending their current beliefs and thinking that such approaches would suffice. My final concerns are with these statements; At the moment, the project is in its infancy. There is still a lot of research to be undertaken, and work to be done. However, we will be adding more and more information for adults with autism to this web area www.autism.org.uk/maturity as it becomes available. For me this strikes at setting up work related oportunites for the professional community should funding be available. It comes across that once these professionals have done the work they will be kind enough to provide us with some information. You never know some of us might get lucky and be part of this. We will also be collecting case studies and useful resources. We might get talked to and a nice profile of our lives will be put together by a professional along with a photo I guess. So given that there are now more and more individuals being diagnosed who have massive first hand experience of living for many years with autism in its various forms is this the best the national association can 'aspire' to do with all that experience, a few case studies and put them on the internet? Is it just me or do these people think that everyone with ASD conditions acts and thinks like a child and that they never ever grow up.

The problem with NAS and the government relationship is I believe because of what I highlighted earlier, the evidence is in the annual report. Their core revenue streams 89% of their income is about offering services through professionals. So see them as an agency or a union but they obviously have a massive incentive to safeguard those services. My question is for who? It is very easy to see the NAS going into meetings to make sure that standards are structured so that they are in line with the expectations and skills of the professionals in the sector. If government was to go in another direction there is a massive danger the autistic landscape would be affected. Now people can draw thier own conclusions but whilst that landscape might be altered in a negative way, and the NAS can easily scaremonger it could also alter in a very positive way. From what I see on the forum most people are not happy with how things are, but there is a protectionist culture that we hope it doesn't get any worse. If anything it should be getting better but that requires leadership and an element of risk and reward to try new things. In many ways diagnosis for Aspergers are a pretty new concept and as such there should be innovative thinking everywhere because we are at the early points of a natural cycle where innovators and early adopters should be prevelant. As such I believe the answers Canopus should be focused on smaller projects at local levels not in trying to create a national organisation built on concensus. For me what the NAS is trying to do simply kicks in the face of conventional thinking. If you look at a parallel scenario such as deafness and hearing conditions there were a number of strategies different types of language development, the use of different technologies etc... To me there was more innovation and as such it is a field which has more scope and breadth to include both clinical aspects and social aspects such as hearing dogs. My partner as a SENCO with a wide range of kids and as a language specialist tells me local support groups in that field are far more dynamic, approaches far more positive from charities through to national organisations. In contrast the AS sphere is one of uncertainty and anxiety and often conflict between affected parties. We might say the average kid with As has it so much harder than the average death kid, but is that really true and should we use it as an excuse when it might simply be the culture which is at fault. Personally I think what will happen is that for all sorts of reasons AS will be relegated as a diagnosis but the information will remain in mainstream so lots of people will say the information is there it fits me so where do I go from here. The NAS will then revert back to an organisation focused on individuals with for a better term 'classic autism'. With a reduced market they will have issues downsising their opperations in respect to the professional services they opperate. It might mean they become a better organisation because their focus will come back. As I have said previously I just think things have got too big for them and they have become greedy and seduced by a percieved power position. What I think that will mean is that the AS community will be in a slightly different position and will have to be more innovative in respect to the support it gives each other. I think as such social media and local activism will drive it forwards and that might be the best thing which happens for AS. It will mean that adults with a diagnosis will be driving the agenda forwards in a way rather than parents of children. Whilst that might be a bit difficult for a child who is placed on the AS end of the spectrum because support services will be non existent, for teenagers it might be a blessing. Rather than have their parents acting as a catalyst for information and decision making in their lives, the young adult aspie will have a mature community into which to tap for information, advice and unlitmatly companionship. That community might be better place to pull and guide them into adult life rather than being pushed into it by parents and schools. After all AS is a development condition and pulling is a more forcefull action than pushing and it is more receptive to variable developmental time frames. Just a few personal thoughts about something which I believe should be openly discussed where ideas can be exchanged. I am really not trying to create a monolouge here rather I would welcome an open minded discussion from a wide range of perspectives.

The problem with the documentation 'Fullfilling and Rewarding Lives' if we want to open up the debate further is its starting position is a centralised view based on public service provision and controlling those outputs through best practice in respect of the consultation documentation. Taking that best practice and pushing a bill through political processes in Westminster will do two things. Firstly it will put another rolled up piece of parchement paper into the vaults of Westminster and secondly it will lay down in law stricter guidelines as to how services should be delievered in this country. Even when in place most people will carry on in the same old way. There will be one or two who will decide to put the effort into fight for their rights, is that how it really should be? That is all well and good as an individual if you have an attatched funding stream which enables public services to spend tax payers money. At a simple level all the bill will do is say how they go about consuming tax payers money. For those individuals with ASD conditions who have none or recieve very little financial provision the bill will do absoloutly nothing. It doesn't matter how many fluffy well meaning statements are in the opening sections, it will fundamentaly change nothing for large numbers of people on the spectrum. In truth we shouldn't need a bill directed at autism what is need is leadership and good quality practical ideas to improve the lives of people. That is what the NAS should be all about not posturing over political processes which really highlight the fact that they along with others have done a terrible job overall in the area of autism in this country. What I feel more people should have done is go through 'Fullfiling and Rewarding Lives' and things such as the NAS annual accounts and reports and scrutinise them in detail, but very few people do and that includes professional who make a living out of autism. The problem we have when people don't do that is bodies such as the NAS get seen as being more or less representitive of the whole autistic community. Individuals such as myself can and do get involved in the governments consultation processes and are critical of some elements and do put forwards suggestions but do they really get listened to? For example Special-Talent when you go to your meetings how much of this independent stuff do you ever get to see. When you sit down as a representitive of the NAS how much of this stuff does get brought forwards by policy makers or is it simply a back slapping exercise and everything is wonderfull in the world of autism. And that is my issue with organisations such as the NAS and central government it is a culture which is insular and self congratulatory. It is so easy for them to say we have had one or two radical views but the NAS is recomending this better go with them. When the reality of autism in this country is tens of thousands of individuals living through a nightmare almost every day. Whilst I would never place myself in that group I am not naive enough to think those individuals don't exist and that we share many elements in our lives, as such I feel responsible for and part of the wider autistic community I just wish out national society would feel the same way. Special-talent please do not take this personally because I respect you will see things from your perspective all I want to do is put things as I see them. This is an open forum and someone from the NAS is fully entitled to come on here and try and shoot me down in flames. In fact I and I suspect others would welcome that exchange and to go through proposed policy documentation and annual reports. And have an open an honest discussion. At the end of which everyone could make up their own minds. All I have to say on many of these issues their silence is deafening

Lying on my back on a woollen rug on grass in bright sunlight which was not pleasant at all. And being aware of a strong smell of damp dog which I quite liked. On reflection I would have been out in the garden of my grandparents and their dog would have been keeping an eye on me. The sensations are what are very vivid and a feeling of angst. I am not too sure if that is a totally valid recollection or something I transposed into a time and space.

Hannah just want to say I completed your survey but I found the first half to be hard work and put out a warning to other people thinking of doing this survey there are a lot of standard questions in the first half which are just regular stuff lifted from typical AS questioning processes. I felt ###### how much more of this patronizing ###### do I have to plough through and was close to quiting on a couple off occasions. I am sure others will feel the same way. However once through this stuff there was a line of questioning which I found interesting but there were two main difficult areas for me and I suspect others might feel the same way. There was no differentiation between family as an extended biological family and those individuals who might constitute the immediate family you live with. Personally I felt because there are very different views between each group it was very diffiucult to give a valid response when there could be polar opposite views present. In a similar way the concept of what might be a close friend or friends in general was not fully differentiated. I raise these points because I think many mature adults with ASD have quite complex social relationships which are possibly far more polarized than NT relationships. As such we might have just one or two people we really trust but can be generally distrusting of wider groups even family and friends and we simply go along with as a coping strategy. I think self-esteem can be very different between these areas. As we get older our lives can develop complex layers which simply are not there at earlier ages and this is very true for adults with ASD conditions. My own view was the survey would have been easier for me to answer 15 years ago as life was more straight forwards, not sure if that reflects your own position in life Hannah or not. Just a few personal thoughts which are offered in a constructive way and not intended to be over critical but take into account this is research for a doctoral thesis and not simply an undergraduate piece of research. As such feel free to take them on board or leave them to one side.

For me the word strategy says it all. It is action orientated, an approach about doing things. As a concept a strategy has within it ideas about reflection and adaptation if needed. In complete contrast the idea of a bill is about locking down a positioned way of thinkg as a rigid reference point. It is a response of the inflexible and over opinionated. Just personal thoughts.

I believe Rolls Royce developed a system on some of their cars where they took the noise of the engine measuring its frequency and amplitude and they played an inverted sound wave through the speakers in the car in effect cancelling out the sound waves emmited from the engine making it appear silent. I have always wondered if the same concept could be applied to snoring and whether the costs involved in product development would be prohibative in respect to a comercial bedside product. So for research purposes how much would you pay for a product which cancells out the effects of snoring in the room, just trying to get a bit a background reaerch prior to my Dragon's Den moment of fame, or are you all saying "sorry I'm out!"

Maybe part of the problem is the sceptism with which some professionals regard adult diagnoses. There is also the fact that parents - naturally enough - want to believe that with all the support and 'treatment' available their children will be able to move comfortably in the NT world; hearing about the continuing problems/difficulties adults suffer isn't what they wish to hear. In respect to professionals I think there may be a level of sceptism Indiscreet but it is quite handy for them to take that line when it serves their own intrests. I know when were were foster caring there were professionals around recieving nice fees for half hour sessions here and there. They would look at the kids in care and state the ###### obvious "this child has issues", well to be honest that is what happens when you get sexually abused at a young age and left on the streets. At no point did these professionals offer to take the kids into their homes for even a week to observe them closely see what they were like in the real world, far from it, they wouldn't even visit our home for thier infrequent half hour session we had to go to them. In contrast people do take kids in and work with them close at hand and what do they get for it, well the answer is nothing it simply covers expenses for food, clothing and the stuff you would do with your own kids, but we don't complain we just get on with it because the kids matter. And the professionals find that very hard to deal with and I am not surprised. Because in my experience if you turn up with happy smilling kids a few months down the line they are pissed off because their copy and paste exercise for their next report has just gone out the window. But because there is no way they would have the kids they have to accept somebody has to do it. The problem is these people often need tools to maintain their status and those tools are writting a report here a review once a year and another report, it is a cultural thing. And because they are experts the conventional world defers to them. Indiscreet I think you are also very right about parental attitudes and I see it a lot on the forum. There is a reality about ASD and that is it is a life long condition and that is difficult for many to accept. In my opinion that really isn't doing the kids a service. The issue is it supports a culture which is not good. There is for example a fully approved request for undergraduate research on the forum at the moment looking at self-esteem in 14-16 year olds. Which group is being asked to participate in the survey 'the parents of 14-16 year olds with AS'. Why not ask adults with AS what was your self esteem like at 14-16 I am 47 but I can still remember! It is little things like this which make me feel like saying forget it in respect to the forum and ASD in general because to be honest I am ok, I am able to get on with my life.It is not peoples issues which I find challenging it is the background culture. I often ask myself is this about the individuals with ASD or the people around them? In reality many people with ASD lead very unconventional lives because they are unconventional individuals. The problem with ASD culture is it tries to drag the unconventional and make it conventional and that simply doesn't work. When it doesn't the next point of call for conventional thinking is to adopt cliches and find individuals who fit those patterns. It is at that point that professional and parents say "told you so" to people like myself. To answer your points Special-Talent I am not saying the NAS do nothing, given £90 million they are bound to do something, and I fully respect your experiences of the organisation as being valid. In my experience they are interested in individuals who think like them and come from within their culture, they are deffinately not interested in individuals such as myself who do not. As such they are in my opinion not representitive of autism in general what they really are representitive is a section of the population who share their views on autism. The main issue for me is that those views are predominantly NT driven. When it comes to Ambassadors and Champions and I am not being personal here it is easy to draw people from within an organisation's own ranks. That is like recycling a culture and it doesn't really lead to new thinking, radical ideas and change. As you say Special-Talent they have done things for you and I understand that but there is a temptation for you to therefore say do more of the same. I have approached the NAS and I know what my experience was. And what concerns me is that I am a pretty skilled individual with quite a lot of experience in a wide range of areas and I found them to be very dismissive. And my conclusion I have to say was that many people who share my way of thinking have "no chance". I had been told this would be the case by a couple of respected specialists in the area who have published books, run services and seminars etc... they told me not to bother I was wasting my time, I gave the benefit of the doubt to the NAS, I had to contact those individuals back and say you were right!

There are different departments and sections within the NAS, the helpline has been very helpful as has Advocacy. NAS appears to be streamlining but allocating £32m to improving a certain residential home was a total waste of resources IMHO. This was during what was supposed to be a recession. I kind of agree about where the resources are targeted. But I think 'direction' is a difficult area for the NAS an one which they need to think carefully about. To use an analogy of another scenario maybe others might see what I feel the problems are and what solutions might be appropriate. Because of our involvement in firstly Iraq and now Afghanistan the MOD are facing a growing problem. Whilst we hear of deaths on the news what we tend not to hear about on a regular basis are the large numbers of soldiers who are returning to this country after having limbs removed by incendiary devices. We are not talking one or two but hundreds upon hundreds. I live in a city which has a garrison and for the first time in my life I am starting to see young men out and about missing limbs. The problem for the MOD is what do you do about it, what level of support is appropriate? At one level you could say it is just part of a dangerous job, fly them back and treat them in a civilian hospital and at the first opportunity terminate their contract. At another level you might feel an obligation and a level of responsibility to look after those individuals for the rest of their lives. The dilemma for the MOD is if you take the first line of action the perception amongst the general public will be of a callous organisation and recruitment would be even more difficult. If you take the second option the costs would be completely prohibitive and large sections of the defence budget would be having to be spent in a way which is like handing out a fully enhanced pension and compensation to a 19 year old who might be expected to live to say 90. I personally think that the NAS or anybody or group dealing with autism is facing the same sort of dilemma. They simply have not factored in the realities of adult diagnosis. It is an incredibly naive thing to do, it is like believing groups such as Taliban sympathisers are going to come out play fair and fight a conventional war. To believe children and teenagers don't go on to have significant issues in adult life is crazy. To believe there are not 100,000's in the adult population is equally naive. In a way spending £32 million on a project is like the MOD building a super slick rehab home for injured soldiers with 32 beds in it. It is great for the people who work there and live within it. It looks fantastic to people who visit it. But the reality is it's a complete waste of space if you are a soldier lying in your local hospital having surgery to repair shattered limbs and haven't got a cat in hells chance of ever getting into the place. In a similar way you might be a nurse, physio, psychologist or family member supporting that soldier close at home and wanting to do your best, but it is very difficult to know what to say and do to repair some of the real damage which is about self esteem, self worth, hope etc... simply because they, like me wouldn't have a ###### clue what it was like to be on patrol in that sort of environment and experience an improvised incendry device go off in the middle of a patrol group. The people who really know and the ones best placed to deal with things such as this and the rehabilitation of injured service men and women are those who have been through the same experiences. The people who have come out the other side and built a new life for themselves. In a similar way the NAS will be unable to keep up with the growth of ASD diagnosis, predominantly Asperger's in this country. No number of new fancy schools, residential homes or work based centres will ever start to scratch the surface. In many ways I think they are counterproductive because it falsely highlights you need all these special environments and professional expertise to solve basically simple life issues. It is like saying to an injured soldier if you don't make it into the specialist residential centre you might not have much hope, when the reality might be you just have to learn to get by on artificial legs. The answer for ASD is I believe mentoring programmes putting people who have been through experiences in life with people who are finding it difficult to adapt to their existing circumstances. It needs to be way more focused than the concept of a local support group which in my opinion is a collection of parents going through things for the first time it is parents supporting parents not an ASD diagnosed individual supporting another ASD diagnosed individual. A good system would immediately feed in a mentor as soon as the diagnosis was made. When me and my partner were recognised as foster carers we were immediately given an experienced mentor couple who were absolutely brilliant. We thought we were going through things for the first time when kids were great for a couple of weeks and then suddenly it was if a tin of fireworks had exploded. Our mentors just laughed with us and said it is like that nearly every time, and we thought thank goodness it's not just us not having a clue. At a serious level my concern is if AS as a condition and importantly AS in adults is not dealt with in some way such as mentoring schemes but rather is ignored, there is a real danger the issue around it will become really big and out of control. At that point the sensible conclusion might be from a political and economic perspective to strike the condition off the books so to speak, assign it to history. Such an approach I suspect would suit many in the NAS because we would return to a culture based on 'classic autism' rather than one of an 'autistic spectrum'. In some ways such a move would not really affect the likes of myself, but for many younger Aspies diagnosed in the past few years it could be devastating. And at that point questions would be asked of the NAS why didn't you do something to address the obvious issues which were going to be generated as a result in the growth of diagnosis in respect to AS. The questions would revolve around why didn't you put low cost structures in place and tap into the resources of those recently diagnosed with AS who were mature and had masses of experience in real and practical terms. It is at that point where I think they will have difficulty justifying services they have built up in for example the education sector aimed as Aspies in the school age range because the reality will be the diagnosis will be no longer valid in respect to their own funding. At that point rather than anything being in place it will be the equivalent of tough ###### mate you have just had your legs blown off, never mind. The question might be of the poor soldier did you take out a very good critical life insurance plan and the answer might be they don't insure soldiers. The next question might be are you an officer mate because they look after those ranks. In a similar way I think there will be many individuals screaming for promotion to have a classic diagnosis simply to stay in the system. The vast majority of people on the spectrum may well be innocent victims of life who just have to work out where the hell do I go from here. Just a few more thoughts.

Canopus I have looked back 4 or 5 years and things have changed in many ways both on the forum and in respect to ASD diagnosis in general in respect to the make up of the community but not in attitudes in many areas. What I find really frustrating is that the diagnosis of adults with for example Asberger's simply isn't being used in a constructive way at all. Without doubt the adult Aspie population will present a very mixed picture. But within that adult community there are I believe many success stories of people with AS who have gone through tremendously difficult experiences and have come through those so much wiser. There are also many individuals I believe who have achieved many amazing things both by using the condition and by battling against it often all at the same time. I would have thought many such as the NAS would have seen the growth in adult diagnosis as a massive gift and an opportunity to make significant strides forwards in respect to information, strategies and highlighting issues. What I see however is a culture which is locked into children, teenagers and now is moving into the early twenties range. Without sounding disrespectful to individuals or parents of individuals in those range AS is a developmental condition. As a result I believe it took me untill my mid to late twenties to really develop the levels of maturity to reflect on my life in a constructive and positive way to draw quality conclusions. Within the current climate it feels as if we will have to wait another eight or ten years before any of those conclusions even start to become part of mainstream thinking when in reality there are fully loaded trees just ripe with fruit ready to be picked. The problem with the NAS is they seem precocupied with growing seedlings as their core focus rather than take the opportunites offered of a potentially bountiful harvest. In doing so they simply reinforce cliches and seem to feed off a constant cycle of confused parents who are coming to issues for a first time. In contrast individuals who have years and years of experience are completely ignored by them both in terms of needing support and importantly in offering support in the development of knowledge and ideas. As such we have a culture of 20 year olds who think they are experts because they feel they are at the leading edge of AS development or professional who do not have the condition and have a knowledge based on training which really didn't look beyond adolescence as such they are completely patronising.

To be honest if they were really open and said they are basically functioning as a service provider for the public sector targeting a limited number of cases of ASD within a certain area of the spectrum I would have no real issues with them. Likewise if they said they were an organisation offering basic information for parents then likewise I would have no real issues. If you go and look at an area such as deafness and hearing loss, an area my partner professionaly works in and personally supports in respect to charities there is in my opinion a completely different approach, so I believe the issue is one of leadership and direction. I think a danger in life is when people say "I can do that, I can do that, I can do that" and them then realising they have dug a massive hole for themselves. They tend to stand there looking pretty and hope no one notices but if they do the questions come in such as "didn't you say wou were going to do that". They have a choice to either remain silent and hope the questioner goes away or respond with "I never actually said I was going to do anything" at which point people will make conclusions. To be a charity which actually doesn't do anything is a difficult position to take. Now I am not saying that they do 'nothing' but I do question why the NAS is so very quiet when it comes to certain areas which fall outside of its core bussiness concerns. Part of me understands that a few years ago there was a culture of shouting at central government and hoping that large amounts of cash would flow in your direction. As such I can understand the "I can do that culture". The reality is that culture is no longer there if it ever really was and there needs to be a change of direction, whether the leadership within the NAS is capable of doing that I don't know. Time will tell but I am not exactly waiting with baited breath.

I believe they way to understand the NAS is to go to their website do a search and look at their annual report and accounts. From my understanding the NAS is an organisation who have an income in the last year of £90.5 million. Now many may see that as a lot of money. But the question is what are they really all about. 89% if that income comes as a result of fees paid by boddies such as local authorities for services the NAS provide. As a result they employ over 3,200 people every year. So does that sound like a charity or a staff agency to you, I know to me this is sounding more and more like a bussiness involved in providing services at a professional level. As a result they also need to keep an opperating reserve of around the £5 million mark. Now where my problems start to appear with the NAS is all about foucus. The question has to be who provides the income because that is where the focus starts to come into play and the answer is people with a diagnosis who recieve funding streams from boddies such as local authorities. In effect the people who bring the money in and take it out. Now I have no issues with people from within the autistic community who are part of that process. I have no reason to start to question the levels of funding they recieve in respect to their needs what I do have some issues with is the culture it creates and one which is perpetuated on forums such as this. The problem is that those people on the inside of this process believe everyone with ASD diagnosis are somehow part of the autistic community in this country. The truth is that community in its loosest terms is completely two tiered in respect to the haves and have nots. The issue is that the reality of this fact is not been rightly examined and reflected on. In the same annual report the aims of the NAS are laughable. Even if we took all of their income and dividued it up between projected figures of who may be on the spectrum in this country that would only lead to a figure of £130 for all of us. Then look at the aims of the NAS and you would see it would be impossible for them to even begin to be met. The truth is the NAS is not reflective of the wider autistic community nor is it really a charity. It is a bussiness with a focus on a small sector of the community the one with public money attatched to it. It does little to try and change that basic dynamic and so does the vast majority of us a massive disservice by positioning itslef as the national all encompassing charity. It claims the expertise on autism is within its ranks but to be honest I have found nothing new or of real interest on its website which i didn't already know after reading two or three good books whilst I was going through my own diagnostic process. To someone who knows nothing about autism it might all look impressive but to anyone with the slightest clue the information and depth is increadibly weak. To give an example of this there are conflicting views about anti-depressants and the autistic mind in current research a really important topic which you would expect there to be opinion on, or at least the evidence, try and find it? The issue for me is that because the NAS has a monopoly in the sector it sweeps up any public money as a greedy animal saying we can do that and government departments oblige. In effect it completley kills off grass routes level activism. I know if I won the lottery and wanted to put say £100,000 in an autism project I would be far better served setting up something which was focused on one aspect of autism and spending the money directred at that and in doing so possibly move understanding or good practice a step forwards. Give that money to the NAS I suspect it would just get lost within the system and would go towards supporting some administrative sallaries. I think we have to simply see the NAS for what it is, if we simply imagine it to be a national charity which is there to support us all many of us are going to be really disapointed and that is not healthy. I don't think we want to create a dependency culture within the autistic community where it need not be there. As such it is important to recognise needs but the answer is not going to be the NAS regardless of what their aims are. For many it is not going to be the NHS either. I think that often leaves us with friends and family and where they are not there we have to take responsibility ourselves and many people fit that last category. The thing that is upsetting for me is not that many people are in that place but rather there is a national denial by groups such as the NAS simply because it highlights how far off the mark they are in achieving some of their own aims, there is a massive amount of denial in the organisation and that is pretty sick when the individuals concerned are sat in a nice air conditioned office recieving a reasonable sallary whilst adults with ASD are in cold unhealthy bedsits barely making ends meet with little or no help for all manners of secondary mental health issues. Those individuals don't own a computer so would never have a voice on this forum yet a group claiming to be a national charity doesn't even recognise they exist, rather they are happy to recycle their values which origonate from a group of parents who came together. I am not disrespectful of those values and origonal aims, it is the fact the NAS claims to have expanded its thinking which worries me. I am sure someone from the NAS will come onto the forum post and correct me because with £90.5 million you would think they might take a look every now and again and add to these message boards.

I can remeber a few years ago saying to someone I had never ever seen a single eppisode of a soap series, the closest thing I had come to was watching some of the early eppisodes of Casulty. I was then told they are really good you don't know what you are missing. My response was ok pick the one which is the best and when you think the story lines are at a good point I will sit and watch it. The point came along where I sat down to comments such as "this will be really good because.........." I sat there and watched it without comment and could sense everyone in the room was a bit uncomfortable besides me because it was only 30 minutes of my life and no big deal. It finished and I said "so do you want me to comment on the quality of the script writting, the acting, the genral production quality, on its strentgths and weaknesses as entertainment?". The answer was "no not really it was all pretty poor wasn't it" and I simply said "yes". There are some really good things on TV but the standard of the vast majority of it is dire. I believe that if you watch a lot of TV through non selective behavioural patterns you actually loose sight of how bad much of it is. To sing it's praises I watched the three part thing on BBC2 where they did an autopsy and reconstruction of three of our ancestors starting at neanderthal man and working back which I thought was brilliant. So there are highlights but I find they are harder and harder to find my once favorite programmes Question Time, Newsnight, Antiques Roadshow, Grand Designs, Top Gear, This Week etc... all seem to be on a downward slide into drivel. I would much rather watch something which was designed to start at that point such as Red Dwarf on Dave these days at least there is a level of honesty there.

What's X-Factor? Isn't it some kind of cosmetics brand!

If I was to base this on personal experience I would have to put a foot in both camps. A lot of that would be based on experience of foster care and being involved in some pretty unconventional situation because a lot of our work was about integrating kids back into family scenarios rather than holding on to them up to the age of 17. On one side of the argument biological ties are imensly strong in a lot of individuals. No matter how destructive and abusive relationships have been family is still family and that means something because there is often no real alternative. A lot of people would be surprised that even after being on the recieving end of a lot of pretty severe abuse of all kinds and severe neglect kids can still be very loving to their family members even when they facilitated the abuse. So I would have to say there is a massive biological element in our coding in respect to familly. On the other hand I see the very same kids as being survivors and part of survivability is adaptation. They can have a very transient approach to what is family and even for a short period of a few weeks or months they can be a very real part of a meaningful social group. Because we had places and a place might be two siblings and we were involved in emergency care the structure of our family was very often changing on a monthly basis, the only constant being me and my partner and very often one of us was out in respect to work or other responsibilities. As a result social positions were changing all the time and the role of the oldest child might for example not be based on age but on occupancy of a bed as that entailed knowing where food was, what the local area was like, giving the low down on the two adults etc... So I can see family very much as a flexible social construct. I believe at the end of the day we see what we want to see as our family and I believe a lot of that decision making is based on serving each others needs. When out needs might not be met by biological associations we often turn to something within our existing social scenarios, who is to say what is wrong or right just as long as things work for both parties.

I think it depends on what you mean by taking part in society. If for example you have a kid with ASD who is well balanced holds down a paid job in say a supermarket and is an accepted part of thier local community, where do they stand? If they have not sought a formal diagnosis, been to a special school, recieve formal support and don't aspire to a univesity education are they missing out on society? Some people may shout "but they have rights" but is this right or wrong? And in many ways this completely highlights my point. As someone with AS I fully understand what the condition can entail. As a teacher who has also spent time in special schools and with a partner who is a SENCO with over 25 years of experience I have some undesrstanding of things, I have aslo been a foster carer in that system. I am not diminishing the condition in any way. What I am passing comment on is the culture which has been built around it and asking the question is that culture in the best interests of the majority of kids with AS in this country. I think the responses so far say it might not neccesarily be so. In trying to find answers to why that might be so one conclusion might be that it is self serving to certain sections of our society. One approach might be to ask why do those sections of our community seem to need more support and in other sections kids with AS for example may well do better in respect to contentment and self esteem? I think we have developed a white middle class culture where there is a lack of individualism and in effect those parental groups are petrified if their child is different and so want society to compensate for that difference in inappropriate ways. Personally I think what this post shows is that 10, 20, 30 or more years down the line that difference is still there, yet people are still having issues. A lot of those issues are about acceptance and a feeling of "life is not fair". That is a basic desire for compensatory measures to be put in place. But put simply life isn't fair rather it is what it is. I agree as humans we need moral support and when sections of society have gone down the line of living very insular lives in an attempt to seek their fortunes then should we be putting in lots of moral support? Personally I believe the culture of Aspergers is not sustainable and a lot of it doesn't work anyway. In many ways it is an extension of a white middle class culture which is also unsustainable. As a broader society we are going to have to realign many aspects of our lives to a more sustainable model and that will be a shock for some sections of society. Some sections will be far more resiliant than others and will adapt quickly others will find it very difficult. In many ways our house values have become vastly inflated, the level of salaries in the service sector are often rediculous given the amount and nature of the output. Our use of energy and other resources is well beyond the planets means to deliever. And sadly our cultural expectations around Aspergers are misplaced. I think the way forward is to understand we can't manufacture some corporate solution when it comes to peoples lives. We have to take responsibility look at our own localised environment and find a role within that scenario which works for us. Things will not be perfect but they might well be sustainable and that should at least offer a level of comfort in a complex world. Just a few personal thoughts.

In response to Aspergers and ethnic groups. I have worked in a variety of schools and where there hads been strong ethnic mixes. I would say I have seen what I consider to be cases of AS type behaviour across all groups predominantly boys but not exclusive at all to white children. When it comes to special needs my feeling is that in ethnic groups a lot of kids who are from ethnic groups (non white) tend to recieve a diagnosis following moves by the school. I would say that is also the case with lower class groups. In contrast I believe white middle class society has grabbed hold of the notion of 'rights' and embraced it as a cultural phenomenon. I for example have known a lot of British Pakistani/Indian families through playing and coaching a lot of cricket with them. Their cultural notion of schooling for example is to send them to the local primary or comprehensive. If they work hard and can afford it they would consider a private education. In my experience what they are not interested in is exercising rights to choices around the state sector. Interestingly I was out running this morning and went through an area of town which is in the main a Pakastani origin community. The was a boy of about 10 to 12 out on the street in his pyjamas having a controlled meltdown on a street corner first impressions were he was autistic. He was making loud gutteral noises and spinning and arm flapping to let off a bit of steam, completely oblivious to anyone around him. He was being supervised by an older lady of around 70 years of age and a girl of around 14 and was perfectly safe. There were other people out and about and they were not paying a single bit of attention to him rather it was a controlled and very accepting scene. The odd one out was a white middle aged man in his running gear. Personaly I believe ASD is there in all sections of society and to a large extent in the female population. A lot of the time though there are issues, they can be accomodated and assimilated into community living. I think some social groups are far better at doing this than others. Those same groups are also less likely to exercise rights to external support rather they have a culture of self sufficiency. The concept of 'rights' has grown in line with the growth of the white middle class. In many ways I think it could be read as a sign of insecurity and the fact we have moved away from communal models of living. I was brought up in a run down white working class town surrounded by low living standards and deprevation. I knew i was different at the time and I can see now a lot of that is because of a condition called AS but I never felt disowned by my local community rather everyone had a place and was accepted. For example I was rightly suspended and expelled from my local schools but they always found a way of taking me back in, I was never completely rejected, but then again I never thought they were not good enough for me which might have helped. I think the reality is that a diagnosis of the condition is all about access. And if we traced the origin of every diagnosis I suspect an overwhelming majority will all start out with white middle class individuals be they parents, GP's, school teachers or educational psychologists etc... If there is a question to be asked it is not about the scope of ASD in our society but it is about percieved access to a state system from what appears to be one main group which is possibly self serving and not too interested in cultural groups which is different from their own.