scotkaz

Hi Leesome We recently got a diagnosis for our 20 year old son after many years of wondering what was happening. We had been told so many things since he was a child from he is just wanting attention to he is just being spoilt etc. AS diagnosis has made a difference in our lives, it has made many things make sense. I am not AS but it is very possible my other half is, and he knows it too. You sound so similar to my husband. And so I will tell you what I would tell him, which is that there are some things we just cannot change and so we need to make the best of whatever situation we are in. It may sound trite and I do not mean it to. I have always been the positive one and he always see's pitfalls even when there are none. It makes a difference to me if my husband is AS, it makes me understand things he has done over the many years and it also explains how he is with me to an extent. Your wife will feel the same I am sure. For so many years I felt it was something I did wrong because I could not work out his moods, his tone of voice nor the atmosphere he could cause when things didn't go right. You said this. I am sorry you feel like this but you are not doomed. What would you tell someone who felt like you do? If they asked you for help? You are the dude to your son no matter whether you have AS or not. Just cos you are his dad. You are imagining everyone can see what you are feeling and thinking. They cannot honest. But we can all feel this at times. hey you are normal Your wife and your kids love you just as you are. And so do all your friends. You have survived all these years and while a diagnosis may throw you a bit emotionally, it is not the sum of who you are. You are more than this and the people who know and love you already know this. It might take some time for you to realise this but you will get there. I promise. I hope you feel better soon. It takes time I know but you will get there. PS get back to the activities you loved. You deserve to have fun too

I think you said what I tried to say in my worked up state. Thank you for that. You have been fortunate and so have we really, it is just this one woman. We are also very early into diagnosis, my son was only diagnosed a few weeks ago. Well done on getting out to work:)

It matters because of this woman's lack of understanding and attitude towards my son and myself. She started off with a know it all attitude and for someone who works in a job centre to think she knows the ins and outs of people's illnesses and disabilities when she is not qualified really put my back up today. Every time I tried to explain something, she jumped down my throat with her opinion yet she did not have one report about my son on her desk. She was just generalising and that is not her job. If my son gets the help he needs he will be able to go to work or college and get on with it well. It is just getting him to that point. She really just got to me and perhaps I haven't explained it very well how she made us both feel. I will do as Kazzen suggests.

Yes he is on ESA. Thank you very much for this advice, it is something I can see about. Much appreciated.

What a wonderful inspiration you are My son was 20 when he was finally diagnosed but we do believe my husband who is 49 also has AS and he has been wondering about getting tested too. After reading what you said, he said he would go for it:) Now I know a little about AS so many things in my marriage make so much sense. Now I know him not talking is not him being in a mood

This will probably be a long post, so grab a coffee or a tea and sit back:) I really could do with some advice on something that happened today. I am really angry at what happened. I will explain the background to it first. My son aged 20 was very recently finally diagnosed with AS. He also suffers from depression and is on medication for this. He is still a very anxious lad in new situations. Our doctor gave him a sick line in the middle of March for 6 months ( to begin with he said) while we waited on the diagnosis and due to the depression. His B12 was also very very low and he gets B12 injections which have helped some. He was on the sick for a matter of weeks and got called in for one of the DSS medicals, which we attended and the doctor to be fair was pretty understanding. A few weeks later, they called him back to do a review of his situation and tell them of the diagnosis. We got a nurse who was very helpful and was pretty knowledgeable on the difficulties he has. She sent us the report of what she has said and it was all very supportive that my son be given time to deal with his difficulties, and to be allowed to get the help he needs from NAS help and Prospects when he is ready and confident to do so. We have not had the report on his diagnosis just yet as the person dealing with it all will not be back from holiday till August, but she came to the house to give us the diagnosis and explain it all. I need to back track a little here. For many years I tried to get help for my son because he was so withdrawn and would not go out, stayed in his room and all the other stuff that had gone on for years. All this seemed to fall on deaf ears until he got to high school and to get there he needed to go on a bus. he did that once and then after that we had to take him and collect him. He has never been on a bus on his own ever since. When he got to third year and began refusing more to go to school due to bullying and just hating school in general, except for drama, which he was always good at, they sent him to a small school with ten pupils only, because they felt he would cope with that better. To be fair he did cope and loved it for the few years he was there. Once he left school he just slipped deeper and deeper into a depression and stayed in his bedroom almost 24/7 playing computer games and watching TV. We only saw him when he came down to collect his dinner plate or have one of his long long showers. We even had to send MSN messages or phone upstairs to him so he would come down for dinner. No friends EVER came to the house not since he was about 6. And he never went anywhere at all. Finally we got a letter to go to this place for help. When I got there I noticed that it was an Adult Learning Disability Centre. I wondered why we had been sent there and wondered even more when all I could see was profoundly physically and mentally disabled people there. The doctor at this place took one look at him and asked why he was sent there? He spoke to my son and spoke to us and told us he does not have a learning disability. I told him I knew that, I already have a daughter with a mild learning disability and he is nothing like her. He referred him to the place we finally ended up at thank goodness. One of the first things we where asked was if he had a learning disability and I said no he doesn't. The doctor we spoke to said she did not think he had one either but was only asking because it was on his records. I told her that he had never once been referred for any assessment for this. Apparently his quietness and difficulties at school had been put down to some sort of learning disability because that suited someone. He got assessed and was diagnosed as I say with AS. On the day he was diagnosed the Dr made sure that she said to us that he most certainly does not have a learning disability. We where told all the help we could access and one of the bits of help was to get my son out on the bus, so they applied for a bus pass for him and the psyc nurse will come out to see him weekly to help build up his confidence on getting about on his own. We were also told about HELP at NAS and also Prospects to help get him into training and possibly work at a later date. We have the forms for HELP and cannot do anything about Prospects until August when the doctor gets back. Everyone has accepted this from the DSS until today that is. My son got called in for a back to work interview. Back to work? he hasn't been out the door for years on his own but anyway we where told he must go or his money gets stopped. Remember he still is on the sick line he got in the middle of March. So him and I went there today and we had Mrs Know it all sitting in front of us. First question. Why are you claiming sick money? I answered because my son just cannot, he sits there with his hands in his mouth chewing his nails and his sleeve and gets more anxious by the minute. I told her he was recently diagnosed with AS and is been treated for depression with meds and counselling. Next question. Why did you not get him help before this? Yes you can imagine I wanted to smack her one. I explained I had tried to get help for my son since he was about 4 and was told he was just a brat. She then asked him if he wanted to be independent and get out and about? he told her yes he does, that is why he is getting help now to learn how to do this. So what type of work do you want to do she asked him. Vacant look and more chewing of fingers and sleeve, then I don't know he said. He told her that he wanted to do drama. Do you go to any drama classes she asked? No he doesn't because he cannot go out and mix with strangers I told her again. Well she tells us, it would help your self confidence but it is not a career, it should be a hobby. Wonder how many famous folk that was said to. So after explaining how it has affected him for so long she tells him that he needs to look on the job centre website and find jobs he would quite like to do and bring a big list to her so she can have an idea of how to get him a job. I felt like screaming what part of he cannot yet go on a bus on his own to get to any job is it you are not understanding, but I said nothing. She then said, so if you have AS then you must be good at either English or Maths. Do you like writing? He said no he did not. So you like numbers then? He said he was okay with them. He told her he was good with a PC and gaming etc. She wanted to send him to college. He began stressing out again, I said the advice we have been given is that when he does go to work or college it has to be with lots of support, a quiet place and part time but first we have to get him able to travel on a bus to these places on his own. Then she said, AS is a learning disability. I said no it is not. Yes it is she informed me. I told her my son does not have a learning disability. She went on a bit about that and told me it was and when I insisted no he did not have one, she said what does he have then. I said he has Aspergers and no he has no learning disability. Well what does it mean she asked, I told her a little but still she went on that it was a learning disability. By this time I had smoke coming out of my ears and my poor son was rocking back and forth and chewing furiously on his hands. She then went on to explain to me that a learning disability was not just someone who had problems with reading and writing. I said I knew that but that my son did not have a learning disability. She then began to tell me that my interpretation of someone with a learning disability is different to hers and that he has one because he cannot function properly or words to those effects and cannot learn. Again I told her she was wrong, my son can and does learn, he can function in his own space, the problem he has is called AS which causes him to have the problems he has not a learning disability. She then informs me that blind people have a learning disability because they cannot learn because they cannot see. I told her she was talking nonsense, that they can learn their problem is they have no sight, they can think and learn. Eventually she could see I was getting very angry and asked about his depression. Did he get tests every 6 weeks due to being on anti depressants, and basically all he had to do was just keep pushing himself and not stay depressed. Seems the office staff at the job centre have got hidden talents and know everything about all sorts of medical conditions. She wants to see him again in September but I really cannot face her without wanting to slap her. sorry for this being so long, I have been livid all day long due to this woman's attitude. My son is now very anxious and he was just starting to come out of his shell a little there. Is there anything I can do about this woman and about these back to work interviews?

Thank you so much for all the support and the suggestions from you all. I will contact HELP, which is what the nurse also suggested. I still feel sorta okay but get a emotional as I think back to certain things that happened with my son. He seems perfectly fine though. He seems to have accepted it without question but I know it is early days xxx

Thanks JSmum. I am sure I will go through a lot of different feelings. The testing itself brought up a lot of emotions which really took it out of me. M is fine, he took it in his stride and said he too is relieved to know what is wrong. Though we have been told to give ourselves a few weeks to take things in. He has felt so different for so long that now he knows it has a name but I am sure he too will need a few weeks to take things in too. I am angry that no one would take us seriously before this time. When I think of all the years when he could have had more support and perhaps some friends. Is the magazine on the NAS site? We live in Glasgow and have been told to contact a family group there. M will also get to meet other people who can help him with some social things, finding work or training etc when the time is right for him. Somehow or another we have coped all these years or adapted in an attempt to cope and it has been hard at times. What the Phsyc nurse found out is that they had M down as having a learning disability. He was never tested for anything let alone a learning disability. I told her weeks ago, he does not have one and one of the places he had been sent to was for adults with learning disabilities, who asked why he had been sent there in the first place. She agrees that he does not have a learning disability and is in fact very intelligent. This angers me that they labeled my son like this without discussing this with me in any way. Just shows that if they cannot cope with a situation in some schools they will take the "easy way" out. I know what a learning disability is, my youngest daughter has a mild one and I knew M never ever had one. Sorry for ranting:) xxx

Today were told that my 20 year old son does have Aspergers. We where asked how we felt about this and I can say in all honestly I feel relief. Total relief. I always knew there was something wrong and I was told so many times that it was a discipline problem, he was just quiet, I am too soft on him, etc etc. We have been fortunate in that finally we got referred to a Phsyc nurse who had experience in Austism and she picked up on it very quickly were no one else ever did. He was tested quickly and we got told in our own home the results. I am only sad that it did not happen when he was younger but I know I cannot do anything about that now.

Welcome Michelle2. My 20 year old who is going thru testing right now clashes a lot with his dad too. I hope you can manage to get out how you feel xx

Well my 20 year sons testing was postponed on the day it was meant to happen so that someone else could sit in on the test to learn about it all. Now I know that learning about tests etc is really important but we where all psyced up to begin testing last week and now it won't begin until 28 April. My son is still not sleeping too well. This is a long standing problem. He is on citalopram and we have got our hands on some Melatonin. Is it safe for him to try it?

he is 20 years old and has been similar to your daughter for many years.He is doing a little better now but still not sleeping good

I agree totally with Matzoball. Tell your friend she hurt you. She might not have a close relationship with her gran and just doesn't understand but it was out of order for her to say these things to you. IT IS NOT YOUR FAULT if someone else says something. you are responsible only for your words and actions not anyone else's. I think it is a lovely way for you to remember your gran and don't let anyone tell you any different.

Thanks Tally.

There is a little boy in my grandkids class who has a problem, I do not know what the problem actually is but it was explained to the kids in the class that he had some difficulties and the kids are good with him. The parents were told that sometimes the little boy hits but that the other kids could not hit him back. That was as far as the explanation went. I think the classmates are more understanding than we think and they are only in Primary 3 and have been together since the start.