My husband and Asperger's

One very good reason for early diagnosis of Aspergers (or high-functioning ASD) apart from better support with school etc, is that it's possible to start early preparing a child for life in the real world in a way they can work with, using their intelligence and reasoning abilities to improve their self-awareness and help them make beneficial choices. Most children really want to please their close adults and to be liked by their peers, and supportive, loving guidance can help them fit in as best they can, as they will need to do to lead a happy life. But it has to be done in the way they can understand and work with, and until an assessment is made, that's difficult to do.

Nelliemoser, I think anyone living alongside these conditions deserves a medal - I don't find it any fun & I realise how much SiLs condition rules all our lives. I could not have stood it for long and really admire my daughter for her patience and understanding. I think people can use & misuse their condition to gain power over others, sink into helplessness or manipulate situations, though I can also understand why they might do this after years of being misunderstood. And I agree there is usually an inability to empathise. I argue with SiL (& some academics) over the 'its all society's fault' stance as I think this ignores the reality that 'society' is slow to change & the person has also to take responsibility for dealing with their condition - I feel SiL does sometimes use it as an excuse, especially when he hasn't taken his medication or stuck to his routines. But then I argue with Mr Gad who feels it is always used as an excuse for bad behaviour. So I suppose I take a middle view.

gadabout I fully understand where you are coming from with the idea of the problem of how society sees an individual with the condition.

I have to say though that in my personal experience of a partner with a long list of very typical symptoms it is very hard indeed and no fun at all.

I am sorry to be so negative but I get the impression that some of those affected who say that it is a problem for society not themselves are, as a result of the very nature of the syndrome itself, less able than most people to empathise with the feelings of others.
I have not put that very elegantly I know. Sorry to be blunt, please do not take that as a sweeping generalisation.

Interesting but understandable that it took so long to diagnose.

We had a lovely but very eccentric friend who said to me a couple of years ago 'I think I have contracted Aspergers Syndrome. I replied that I had always thought he had Aspergers.

His often inappropriate comments, lack of empathy a thousand other reasons.

He was funny, honest to the point of being rude but we miss him so much and his funny little quirks like not being able to pass a garden of iris without planning how to sneak back after dark and in disguise to steal it.

He was a Methodist Minister for years but lost his job, probably because of some inappropriate behaviour or comment.

Differences are what makes this World and acceptance of differences should be the norm.

I was pondering in the bath last night about labels & the apparent increase in labelling people. It strikes me that people with these neuro conditions have always been labelled but instead of medical labels they were usually of the moral & personal judgmental kinds - like stupid, lazy, odd, simpleton, crazy, peculiar, genius akin to madness etc etc ....

Thank you Sue for your article.
One of my grandchildren has recently been ' labelled' Aspergers. At seven she is a delightful companion, her eccentricities are part of family life, and her intelligence and concern for others make her a joy.
I can see that living with her may be complicated when she is an adult, but so far so good.
I hope and pray she meets a partner with the tolerance and sense of humour of yourself.
Loved the cadaver story !

Yes, some illuminating posts here.
One of the big problems with all these neuro conditions/spectrums is that there is a big social factor in them. Many in e.g. the dyslexia/ADHD/ADD world hate the medical model as it is a deficit model & prefer the more positive social model which regards the problems as one for society not the individual. They also prefer the term neuro-diverse to describe themselves. I think we are all on some spectrum or other but society decides which ones, & how far along them, are acceptable.

Personally, I believe you need a socio & medical model as most have no option but to live in this current Society which won't change fast.
I think a reason why there are so many more diagnoses now is that society now (in our culture at least) is less willing to accommodate difference & there's a demand to fit standard behaviours & performance. Those who do get by now without a diagnosis have often found a niche where they can succeed or have good support around them.
Re schools - I know of one where they asked parents to make sure to tell them if their child had any kind of condition because it would bring them in more money!
There's a national ADHD conference on in Liverpool at present. My S-i-L is there & we had fun imagining what it would be like given their particular behaviours. Amazingly he didn't end up in Penzance though he only just got his train because of inevitable confusions.

I have only read extracts in The Guardian but what he describes is exactly like my grandson. The author also deals with the question why some people with autism speak so loudly and why they repeatedly misbehave when they have been told not to do something. More understanding is necessary for those attending mainstream schools ,I believe, and even more for those who have not been diagnosed.

My grandson is 11. While I was reading the book, I kept thinking yes, that's him, every other page.
www.autism.org.uk has lots of information on it about adults with autism.
It's worrying to think that only 15% of adults with ASD are in full time work.

Yes, that's it.

Sorry, same book but wrong title on my part. In my haste I mis-read it. It is indeed called "The Reason I Jump"

The book is called "Living is a battle": growing up with autism by 13 year old Naoki Higashida.

Quote "why do you ask the same questions over and over ?"

Answer ".........it lets us play with words. We aren't good at conversation and however we try, we'll never speak as effortlessly as you do. The big exception ,however, is words or phrases we're very familiar with. Repeating these is great fun. It's like a game of catch.............repeating questions we know the answers to can be a pleasure -it's playing with sound and rhythm."

Is it 'The Reason I Jump' Jen? I have seen it on a colleague's desk, but don't know the author. As you say, it was written by a 13 year old boy.

Many ASD kids have similar traits.
Lying on the floor with cars and lining them up in the same order.
Watching wheels all the time.
Liking simple faces on toys, such as Thomas the Tank engine.
My grandson fixates on the bullet train, and the last time he stood in front of it earlier in the year, he said it had a face. He looks at utube clips with them all lined up and tells you which ones he prefers because the face is better.
Every time he comes here, which is often, the first video he has to watch is when they bring the bullet train over from Japan to the railway museum. We used to have to watch it every day. I am surprised it has not worn out yet.
We thought he must be deaf as he did not learn to speak until after he was going to a speech therapist. But we knew he wasn't because he could always hear a plane or helicopter going over well before anyone else heard it. He also prefers being in a dark room, and looks at things from the side if the light is too bright.
There are just so many clues to this disorder that it takes ages to diagnose. We did not think he was autistic at first because we knew someone who was, and she used to sit in a corner and rock, could not speak, but ran up and down the house screaming if anyone looked at her directly. That was autism as we knew it. This girl is older than my eldest son.
There is a book, I cannot remember the title and I've lent it to someone, but it is written by a Japanese boy when he was 13. He has autism. It's a series of answers to questions he often gets asked, so he thought he would write it down so people could read his answers instead.
It's worth reading.

Gillybob, it is a spectrum so yes some of the behaviour would be seen in many people. For ASD though, there is normally a "triad" of symptoms. These would include problems with communication, problems with understanding social interaction and repetitive behaviour. There is often raised sensitivity to light or noise. People with ASD cover the whole intelligence range from gifted to very low ability. Some people with severe ASD never speak and their behaviour can be very distressing.

Again, very interesting reading. To those of you who know and understand this much more than I do, I wonder if some of the "symptoms" (can't think of a better, more appropraite word) are not really symptoms at all but just personality traits that we all display in one way or another.

Interested in the traffic light system which is probably appropriate to all children. I remember having a conversation with my two grandaughters after poor little April Jones was abducted and murdered and trying to find a way to explain who were potentially bad people and who were not was particularly difficult. They are very social children and mix with a huge variety of people. How can you explain who's car they can get into and who's they can't for example?

Jen, the traffic light system gives him rules about what he can say to whom. Family and close friends are green, teachers, doctors, acquaintances etc are orange and strangers are red. He can say anything to green, has to avoid certain types of question with orange and nothing to red. They spend a lot of time rehearsing how to apply the rules.
His school in Spain is clueless. I diagnosed it (former SENCO), plucked up my courage to tell them and all the diagnosis and therapy has been medical and/or private. The SEN adviser started by saying that the school would not do anything because he isn't disruptive. They have fought that, but have to start again every year as the school doesn't seem to have an effective system for passing it on. However the education seems to be entirely based on rote learning, so he does quite well!

Mamie, you will have to let me know about this traffic light system.
My daughter-in-law - the other son's wife - is Spanish and says that in Spain ASD is not recognised nearly as much as it is here. She teaches foreign languages in a school in England. They have autistic children in the school, but she did not have much sympathy for them or for my grandson until a friend of hers had a son diagnosed.

Actually, Dusty, that is quite often the age at which it becomes noticeable,usually when they are beginning to talk. There are a lot of parents who still will not accept that there is anything wrong, which is why I find it intersting that people on this thread say that their daughters,etc., were like that. The autism charity is doing early day motions in parliament to get ASD recognised more in adults so they can get help. We are hoping that it will go through before my grandson leaves school, so he gets a chance of help. If he stays as he is, he will find it difficult to get a job.
My son is reluctantly letting him come home by himself, or rather with a friend. The high school is over the other side of the main road, with an island in the middle, but a 40m.p.h speed limit, but only ten minutes walk from their house. The other day, my grandson came home by himself because his friend had stopped to talk to someone else, so he decided he had to get home rather than talk to anyone. He would not play around at the side of a road because he would be terrified of getting run over to the extent that he would not cross the road until all the traffic had gone. This is a half mile stretch of straight road. Long may it continue.

I'm finding this thread very interesting and very informative as well.
My late sister probably had some form of ASD. She certainly had a lot of the characteristics of it but then so do some other people I know.
With my sister there was something obviously wrong but my parents never admitted any problem and always insisted she was just shy, That's the sort of thing that happened 75 years ago.
It would have helped her so much to have been diagnosed or even if the subject could just have talked about. It might have meant that she wasn't so very lonely in her old age.

I say my parents never talked about it but my Dad did once say, when he was in his late 80's, that she was normal until she was about eighteen months or two years old.

The echolalia was very pronounced early on Jendurham, which was one of the things that made me realise that he was probably ASD. It is much better now, but he still does things like going into a bar, (they live in Spain; he is half Spanish and bi-lingual) and saying, "Why are you all smoking, it is very bad for you".
His therapist (there is no educational support in school in Spain) is working on a "traffic light" system of what he can say to whom!

Yes, Mamie, that's a form of what they call echolalia. You copy what you know gets a good reaction. We have known educational psychologists sit with my grandson for ten minutes and wonder why they are there. Then after half an hour of following him round a classroom, they know why.
He cannot tolerate grown ups talking to him like a child. They have to treat him like a grown up, until he suddenly launches himself at them for a cuddle. He's eleven now and he still does it. It does not fit in with a child who shakes your hand and asks you your name, another thing he thinks is appropriate for all adults.

Thanks, mamie. That's rather different and helps to clarify.

Bags, my autistic grandson asks the same questions over and over again. He already knows the answers, but it seems to be something he does when he is feeling stressed. At good times, he asks questions just like any other child. I think he is probably trying to instigate social interaction, but can't quite get it right.

I am finding this subject very interesting and can reconize may of the traits described in a member of my close family but I agree that there are probably many children who do not fall within the autistic spectrum who also display some of the traits of those that do. For example jendurham, you say that your grandson says he "wishes he was dead in order to be with his grandad". I can recognize this as my grandaughter who continually "wishes she was dead, in order to see her mums horse that died over a year ago". She talks to him constantly and sends messages (via the tooth fairy under her pillow) many times a week. The thing is she does not understand what "being dead" is. She has been told (not by me) that dead people and animals go to heaven which is a beautiful place that all good people (and animals) go to when they die. She doesn not understand what "being dead" really is. Her sister will not eat anything with red bits in it. We think she means peppers but we are not sure, but she will not budge and no amount of reasoning will make any difference. My daughter (not their mother) has never eaten anything that touches something else on her plate. Everything has to be seperated or she will not eat it. She has been like this throughout her life.