jokatodo

My teenage son has AS and ever since I can remember he has been losing things. Have now resorted to putting sticky labels on his drawers and have gone through each one with him so that there is a 'theme' to each drawer. Helps for a while..... He's so heavy handed with everything, I've lost count of the number of things that have broke! He's been wearing glasses ever since he was 4-5 years old and we were always seeing the opticians to get them mended. No idea what he does with them! He's in 6th Form now and it's so hard for me as he needs this routine to get himself out of the door in a morning..and if he's lost something, I'm always the one to blame

Hi again Thank you very much to Bid for your reply to my post. I will certainly see what help I can get in terms of assessing my husband for early onset Alzheimers as I don't feel that all his behaviour is purely based on him having AS. He has been for a 2nd private session with psych today which is positive. Regarding my eldest son's epilepsy; before he was diagnosed with this, his behaviour was the same and he was subsequently prescribed Tegretol which didn't make much of a difference. He continued to have different kinds of fits, including one which caused facial palsy for many hours after. He now takes Tegretol Retard (SR) and Lamotrogine. His paed says she is happy for him to be on these even though he continues to have these massive rage attacks. His eyes are black and evil, and he's not aware of what he's doing. Only when he's come out of it and cries do you feel safe. Paed says a percentage of patients who are epileptic do go on to become AS/Autistic and doesn't want to alter his meds. I too work with children (some have autism) which does help me understand the complexity of their problems. I am a very positive person and so I'm trying to find out as much information as possible on AS. There are no help groups in our area so this will mean travelling a fair distance to go to AS meetings. Do other readers have a similar problem? Lack of support and information is a big factor. Thanks to websites like this, you don't feel as alone with your problems. Thank you for reading this. Best Wishes K %)

Hi I've been married for 22 1/2 years(I'm NT) to my husband who last month was given a diagnosis of AS aged 50.Appx 18 months ago the GP referred him to a clinical psych but the powers that be at the PCT changed the referral to a counsellor. This was no help to him at all. Having recently encouraged him to complete the Quotient tests on line (systemising, empathy and AS) the results showed he was AS, so we went back to the GP and due to the long waiting list, we opted to go private and were seen within 2 days. The 1st appointment confirmed the diagnosis and was a relief to us both as it's been a turbulent time. We have 2 sons, the eldest is nearly 17 (has poor eyesight probs (due to having had uveitis as a 5 year old), streptococcal disease, epilepsy and probable autism/AS, and the youngest is 14 (also has streptococcal disease). We are presently nearing the end of a divorce as I am unable to manage his behaviour or his lack of understanding of the health of our children. My husband doesn't know what is medically wrong with them, or why I have been off work 7 months due to a severe reaction to a drug I shouldn't have had.He hasn't been able to see how I've needed love and support, so I reckon my recovery has taken longer because of this lack of empathy.He doesn't even understand that we are going through a divorce when I talk to him about it. I understand that people with AS can have obsessions and for my husband this is with his work and sport. Our youngest plays sport(encouraged by his dad) and therefore he has always done activities with him, and had no connection with our eldest who struggles with life.He hasn't been a father figure/role model to him when he's needed this more than anyone. Our eldest isn't easy to manage with all his medical issues and has frequent rage attacks that can lead to destruction and physical behaviour. My husband has never coped with this and behaves like him, fuelling the situation to the point of it ending up with our eldest getting hurt.I have had to tell my husband to keep away from our son when he's having these attacks as I know what will happen. I'm now the one getting hurt as our son is 6'4" and very powerful.I feel we haven't been supported as a family in these extremely difficult circumstances. We have had appointments with CAMHS as a family but they have tried to point the finger of blame on us and not investigated or listened to our dilemma. The childrens' paediatrician is aware of our difficulties too. His main difficulties with AS include being unable to socialise (has to leave by a certain time i.e.10pm), change to his routine (therefore Xmas, holidays, etc are very difficult),has no friends, lack of emotion and empathy (very cold emotionally) and has OCD tendencies. We went together to Relate for a while but he couldn't show any feelings or why he'd even married me. I was extremely upset and as we were going home in the car all he could say was 'What are you crying for'? I find this so hurtful. I feel he is definitely getting worse as the years pass and don't know if this is down to the condition itself (does it worsen as a person ages?) or due to other factors. His father, although he's not had a diagnosis, is most probably AS and now also has Alzheimer's. My husband is forgetting how to do things. For example he wanted help on how to put teletext on on the TV handset, he said the microwave wasn't working when it was etc. The National Autistic Society said it may be down to him being stressed or could be due to other factors. I suppose it's difficult enough to have one member of your family with this condition but I don't know of anyone with both a parent and a child having it and the difficulties they face. Our situation may be different to the norm in the fact that our eldest has extra pressures from other health issues. I don't know if his behaviour is due mainly to AS or a combination of this and his epilepsy. My husband doesn't recall having rages and volatile behaviour as a child so maybe its unconnected to AS. I feel my world is going to get smaller and smaller. I have been able to lead a good social life and have many friends and interests but as soon as I'm home the difficulties surface again. Not getting the support is a big factor in this and I don't know if, with help and assistance with the correct people, things can be any different for us all. I would love to hear from others who are in the same situation as me. It's been great to find this website by the way! Best Wishes K %)