Kinda

Hi Hedders I'm not the best regarding advice on who to go to get your childs problem recognised and others will help with this. I think you are taking on board all the problems of the authorities that should be helping you. The problem lies with them and not you so remain steadfast and keep fighting for help for your child and don't internalise the problem on yourself. Keep banging on the doors until your child gets the help he/she deserves, its not you that is the problem bur their failure to recognise what you have been telling them all along!

Thinking positively then if you think about it your communication problem as related to the immediacy required by telephone calls and perhaps this is a route to negotiate with your supervisor, in other words your communication is fine but need help with telephone calls because of their immediacy and deflecting it away from a communication issue. Hope I've explained it OK and I realise you may think its a mute point but the supervisor may accept this way of thinking about it not being a communication issue but related to say the stress of having to react quickly and that may give you the option of not revealing AS. Just a few thoughts and hopefully it will help you clarify in your own mind how you want to approach it. Take care.

I think you should also make a big issue out of the awaiting report into his AS and explain in a controlled way (I realise this can be difficult) how AS affects him. My son who is older, we agreed a way of dealing with confrontation by way of an escalating scale. If issues couldn't be dealt with at the teacher (lecturer level then it was escalated to year head and after this then myself and head of course. It worked but we still had our disagreements right up to his finals and when I wrote to them all at the end of year to thank them I didn't even get a reply which rather explains to me that they really would rather we weren't there. At the confrontations ( I mean meetings) I would always argue they were being prejudicial to my son as they couldn't meet is special needs requirements and all we ever wanted them to provide was the course in the agreed manner. My son was considered a trouble maker because he questioned their failure to deliver the course to the agreed curriculum and even named and shamed the lecturers who were poor all of which they couldn't deal with. He never attended the degree ceremony and he thought they were incompetant but when he got his higher degree and the standard of teaching was far higher (red brick university) then he was proud to be associated with the university which rather vindicated his and our opinion of the first university. Later on they were named and shamed for rigging the marking to allow students to pass which was another issue my son named and shamed them on. I think you need to try and engage with them and see if you can agree some ground rules and see if you get your son to "buy into" the agreement and hopefully he won't be so frustrated which of course is the reason for his behaviour. Your job is a separate issue and you should not feel guilty about pursuing your own career. Re-read this later and its seems a bit "direct" so sorry for that but for me if you can take the confrontation out of it and try and engage with the school and get buy in from your son it may help and be a way forward. In fact i don't know why schools don't operate a mediation service so the emotion can be taken out of the situation and has empathy with both sides.

Bid Sorry I have just read my posting and realised its your topic. Good luck with your course I spent many years doing an OU course and we used to call it the Loneliness of the Long Distance Learner (for those who don't know its a pun on the Loneliness of the Long Distance Runner which is a famous book). If you need any advice regarding studying I will help as will lots of others on the forum, who are probably a lot more qualified than myself. Good luck and of course be comfortable with who you are, you deserve to be on the course and have every right to let others know of AS or not as YOU choose. Take care.

I'm in Crete and we have heavy wind and rain!!!!

Hi alanm You seem to have a lot of issues around your job so for me I think the disability label is not one you want to go for with an employer. I think the way to think about it is as a NT person but with a communication problem, hope this doesn't upset you but it allows you to see if you can do the job. In other words if its a job that doesn't need face to face then guess that would be OK with you? However if it means lots of fact to face communication then you are not so confident? I guess if I was you I would ask myself can I get a job that doesn't rely on much face to face communication and if not then can I improve communication or is it as good as it gets for me at the moment? My son has some relationship/communication issues but he's in IT and I think he is labelled as a computer geek and so everyone expects him to be different! I know this is a very simplistic suggestion but give it some thought and see how you feel. What you write is excellent communication so for me (mostly NT) I struggle to understand how someone who can comunicate so well in the written form has problems but guess thats the whole AS problem? Take care and don't give up!

Hi Mumble rocks Really good, certainly makes you think and hits home some of the main issues facing Autistic people.

mumofthree I can relate to the accusation of obsession as this is levelled at me by the family! I think others are better suited to responding to this one but for me the school should be providing his education and they should be lobbied regarding this. Have you tried looking into high IQ children and the problems they suffer, see if there is an instituition that covers it and see if they can advise. Maybe the issue is boredom at school mixed in with your other concerns? Worth a try perhaps?

hi all Thanks all for your comments, passed through it now it just seems to creep up on you every now and then. Reading the book brought back so many memories for me. I think the other issue is that our reason for not having any more children was due to the difficulties we had with our first, linked to being told we weren't good parents.

Hi bjkmumy I'm not the best person to answer your question and from what you have said I guess there are other issues that your son has perhaps that you have not mentioned which may indicate better if there are any problems? Its not unusual for parents to suspect AS or autism but the so called specialists do not agree with the parents view. Our son had many tantrums like throwing himself around the floor, head butting windows etc but in the end a health visitor saw there was something wrong and got him help. He has never been formally diagnosed with AS but as parents we are convinced now that he has definite traits. We were also blamed by many for his behaviour as being bad parents.

I'm currently reading the "A Friend Like Henry" which has upset me more than normal, which is due to a terrible feeling of guilt at my failure to spot AS in my son earlier. I know this is a familiar trait with other parents but despite us not being fully aware of the issues he got help from the system which we are very grateful for and he has a job which he enjoys. I just feel had we known more it might have been even better. He's also receiving councselling which seems to be making him more aware that he has to work at being more independant and sustaining friendships and he seems to be working on this. My concern is and forgive me for my ignorance but is there likely to be any connection that any children he may father have a risk of being affected and if so how much of a risk is it. I just feel so stupid asking this question now after 24 years since he was born and I don't even know if its a stupid question. We stopped with only one child because we thought we were bad parents because of our son's behaviour when younger and the book has also has upset me regarding this as that is what Henry's parents suffered from.and it has brought it all back

Lya of the nox It think the reason you have to fight is because they don't understand and they are not emotionally involved in the decisions. From my experience if you are persistant and keep knocking on the door the door opens, sometimes only partly and sometimes opens completely. You must hang in there (I realise you know that and will but you just need others to empathise with your predicament) and keep going at them until you get what you deserve.

Hi Marnie A further thought perhaps they feel they can't cope with trying to understand and then have to deal with the issues your son faces so perhaps just try reinforcing the need for stability with his friends and routine etc in the first instance. I know from my own experience they say they want to know but find it difficult to understand then convert that to how they behave towards situations. I think they thought I was too involved in my son's education and I had an agreement with my son that I only got involved (when he out of his teens and at University when he just couldn't cope anymore or felt they were not responding to his complaints and issues and he felt he had failed when I got involved I felt they tried to fob the students off at best or at worse just ignore them). The point I'm trying to make is they may see you as overprotective but of course they don't realise why you are that way, you are trying to make them aware of the issues your son faces and if they react accordingly your son has less stress and anxiety on them. Perhaps a clear the air when the time is right on the basis of why you have to "guide" them to help them understand your son, obviously put a lot more diplomatically.

Hi Mumble Glad to hear it went OK at university and I think the lack of discussion with your supervisor regarding the health issue is probably down to him not knowing if he should mention it or not and may have decided to not mention it unless you did? Student life is fairly boundaryless and so the attitude generally is if its there I will take it. They never bullied up on you which was your initial fear so all around it was a fairly stress free entry back into academia.

They may make it up again, but guess your daughter hasn't many friends and so of course it has a more dramatic impact on her life and then of course your own. I know this will not help you and even upset you but to protect your own wellbeing you may have to try and distance yourself emotionally when you can. The reason I say this because this was the advice my wife got from the ed psych some time ago. Anyway I hope this doesn't upset you and in our own case it was very difficult to do and I don't think we ever achieved it but we did try!

Hi Mumble Sorry to hear about your mum and I guess you are asking an NT what they MAY feel. Well it depends on how close you are I suppose, but if you were close then you would probably be concerned as to whether she will be OK after the operation. It depends on the risk, but generally if you go into hospital then there is a risk and depending upon how busy you are then it would be traditional to be there when the come around so long as its not too far to travel. But considering the risk of the anaesthetic then I guess it would be more common to be there for your mum, it would be showing concern (in NT terms) for your mums health as well as signaling your love for her. Having said all that I have not spoken to my mum for some 20 years I don't feel anything for here almost like an emptyness, a void. Hope that helps.

Hi Marnie I think the issue over sleeping in the tent has suffered the teacher's view that parent's shouldn't get involved in childrens relationship issues. But of course what they fail to understand is the problems your child has with AS and how important routine and people he can relate to are to him. Its very difficult unless the teacher understands AS and you may unfortunatley maybe seen as over protective, it just makes me so frustrated to see this behaviour from the teachers and a blank refusal to deal with the issue. I know its been resolved but perhaps a way to approach the school next time is armed with articles from the internet which explains the issues your son faces.

Hi Deedee Thats the spirit "up em and at them" and don't let them grind you down and don't give up! Good luck.

Try this link http://www.optimnem.co.uk/about.php I've read Daniel Tammet's book which makes mention of him being gay and living with his partner but in terms of it being an issue with explanation then its not covered. You could always email him for advice. The book is very good and although he explains how he carries out the mental arithmetic I still don't understand how he does it.

Canopus Love your web site and the work you are involved in, great idea.

Cmuir Wot a brilliant post with lots of great info in there!

Mumbles directions are excellent. I used to work next to Waterloo Station and I used to walk down to the Imperial War Museum at lunch time so its not far at all.

Reading and have enough books to last me for a couple of years if I never bought another book, cycling and more recently I've picked up my saxophone again after 10 years. I've joined a music school that has players aged 6-60 years and there are spin off little bands, quartets and groups. I love the theory as much as the playing.

When I was younger living in Liverpool a posh friend of mine moved to a nice area and I was invited over to stay the weekend. We had a wreck (old unused field with cars on it other stuff dumped) where we used to live and regularly used to set the field alight and if it had an oil drum or car there then so much better. Anway my friends new house was surrounded by forests and fields and so what better place to start a fire except this time we couldn't control it so we ran and looking behind us we saw the vicarage fence going up in flames. When we returned home the firemen where still there and his mum questioned us closely but I'm sure she knew, I was never invited again!

Kernow My 2p worth, someone once told me you love your children but at times you do not have to like them!!!! I think this for me explains what you feel at the moment but as you realise the dislike relates to their behaviour and once that becomes acceptable the like and love merge together. I think the question of what is just your daughter and what is linked to the AS is a question that can not be answered but looking back at my own experiences a lot of it is linked to the frustration they feel with communication and relationship and life in general. Unfortunately I don't think there is any quick fix but rather a journey of trying to find help for your daughter that allows her to understand herself a bit better and to allow her to achieve and raise her self esteem. This is also a learning yourney for yourself of course and you will begin to understand your daughters behaviour better and learn what sometimes makes her react the way she does. We went for years thinking our son's behaviour was due to him going through his teens only to find out years later after his teens that he had mild AS. When we knew this allowed us to understand a bit better why he was the way he was but you are already there. I think if you can find out as much about AS as possible, try and understand what triggers your daughter's behaviour (I realise you have said at this stage you don't know what triggers it but perhaps in the future you will find some links) . For me I think if your daughter can find something that she can do well at this will raise her self esteem which may help. My son played International Hockey and represented England in France, Canada and USA and has just been sent by his company to Las Vegas for a conference. When I took him to the airport he was on a high and couldn't believe life could be so good and said "dad how could this happen to me, who would have thought it?" While I'm obviously very proud of him the main point of the email and telling you a bit of his life is to give hope that AS children can succeed and compete with NT children.