Lisa40

I think it depends on how your child accepts things. My DD was dxed when she was 15 with AS and we were advised not to tell her. She found out by reading a psychiatrist's report that had come addressed to me. She is now 16 and will not accept that there is anything wrong with her. At 15/16 she is at an age where she wants to fit in with everyone and not be seen as different. We had terrible problems with her when she was at CAMHS, she refused to speak and open up to them, she wanted to control all the conversations and it was difficult to speak freely. She was becoming a total recluse, but in the last few weeks seems to have turned a corner. She is now living with her grandmother (as she never settled when we relocated to the midlands) and has even found a full time job training as a hairdresser - early days yet, but I am so hopeful after all the dispair of the last 6 years. She still won't accept that she has a problem but we are hopeful that as she matures more she will see that she is different from her peers and accept her dx. Had she been dxed when she was younger, it may have been easier but as a teenager, going through all the usual adolescent mood swings which AS seems to enhance, I can only advise you to do what your gut feeling tells you to do. We knew not telling her at the time was right as we really struggled for 12 months after her dx with her and her denial.

From personal experience, I would make him aware as soon as possible. My dh was only dxed last year (aged 15) and will not accept her dx and therefore we have not been able - openly - to get her help. She rejects any help, psychiatrist visits, appointments with camhs and is a virtual recluse. I feel that if this had been dxed when she was younger, she may have been more receptive to help and perhaps been able to deal with the anxiety she now has a little better rather than stay at home and hide in her safe haven.

Any help or advice would be really appreciated. DD's sleep pattern is really erratic again! We go through cycles of her sleeping during the day and being up all night. We finally work on getting this right and then again she reverts back to what she deems to be the norm. We thought we had sorted this out a few weeks ago, with the help of melatonin that CAMHS prescribed, but again the last 5 days (or nights) we have gone back to how she was. This morning, she was still up at 6.30 am and finally went to sleep at 8.00 am this morning and is still sleeping. I have gone in there frequently to try to get her up but to no avail. CAMHS keep telling me that this is an AS behavioural trait and is usually an avoidance tactic as during the day she is sleeping so doesn't need to deal with the world and during the night, when she is awake, she knows it is safe as no-one will be around. It is a little disruptive at the moment as she starts cooking about 3.00 am in the morning with smoke alarms going off and leaves a lovely mess for me to wake up to. Any ideas on how we can get her keeping to a regular sleep pattern?

Hi szxmum Wow reading your messages is like living my story again. My dd (16) was only dxed last September and whilst it was a relief, it has also been a bit of a nightmare. We originally lived down south and when she was 8 the school noticed some problems with her - lack of eye contact, didn't work well in groups, handwriting problems, no eye hand co-ordination - her IQ was tested and came out above average but then her SATs were so low they felt something was wrong but didn't know what. We were recommended to see a specialist and she was diagnosed with NDD (neuro develelopmental delay) and started a 12 month exercise prorgramme which helped her co-ordination problems (all this was done privately) as we couldn't get the help we needed. When she was 9 we moved to Derbyshire and this is where all the problems started. We put her into a small independant school as we knew that she can't cope with change and felt a small school environment would help her. I used to get constant calls from school that she was not behaving (not being rude but refusing to take her coat off or going to the toilets to hide). We then decided to get an educational psychologists assessment and were told she had a visual memory and visual attention problem. After this we managed to get through primary school. Unfortunately all her problems started at secondary. She went to a school for year 7 and 8 and during those years life was very dificult. Constant refusal to go to school, crying at the gate and refusing to go in and always in a state of high anxiety (now I know why), falling out with friends. I kept getting calls again from school about her behaviour (again more refusals to co-operate) and she was constantly dragged out of class and put in isolation as they kept saying they didn't have the time to deal with her. I repeatedly asked for an assessment as I had a gut feeling and in the end saw the educational psychologist associated with the school, who spend her time lecturing me about having sent her to an independent school and who in the end told me that my child was an indulged child and needed to have firmer structures put in place. We did tell her that dd thrived under structure and we were quite structured at home. I went to the doctor and got a referral to CAMHS at this time but dd was refusing to co-operate and used to sit there mute. At the end of year 8 we felt this was not the school for her and she asked if she could go to the school where she knew some people from her previous school, so we elected to go the independent route. She lasted there for 2 terms!! We had sat down with the school and gavae them all the reports we had and stated that she was at Camhs at the moment but she did have a learning difficult and we were assured they would help. As she struggled academically not giving her homework in we were then told that they felt that this was not the school for her and we were asked to leave after she had fallen out with friends. Camhs at this time also said that there was nothing wrong with her. We then had problems getting her back into the school system. It seems that if you take them out to educate privately, they are not keen to help you and take you back. We were given another school, reports were furnished, met with education welfare and again we have problems. She just could not integrate. She was bullied and in the end we had to call the police as she received threatening text messages so as she was too scared to go back to school we pulled her out. We finally found a school that took her in and they wanted to help, but by this time it was her fourth school and her anxiety leves were through the roof. Constant being sick, headaches, tummy aches etc. By this time we were really frusstrated as we knew deep down something was not right. I went back to the doctor and asked to see a someone privately and we saw the psychicatrist over a year and he diagnosed AS last September. As he also works for CAMHS (although Derby City opposed to South Derbyshire) his dx had to be recognised by the authorities. He also spoke to the CAMHS unit that we come under and we have had some really great support now. Unfortunately my dh does not accept that she has a problem and refuses to see CAMHS although dh and I go to see the psychiatrist and she is really helpful. DD has not been in school since September, missed her GSCE's and I am constantly worried about her future. She has become more reclusive by the day, we can't get her out of the house and she has no interest in thinking about work. My dd and I both have to work and she is at home most of the day by herself with the dog for company. Whilst I am lucky that I am able to work from home once a week, she seems to love her own company. I also get frequent calls at work when she gets a panic aattack and luckily I have good employers and am able to go straight home (it is less than 10 minutes away). She does get depressed but it never seems to last for long as she then just plugs herself into her ipod and starts dancing. I know that she would like to go out but it seems when she actually gets the opportunity to go and and see people she makes plans and then cancels them at the last minute. She lives on her ipod and computer. The strange thing is that she loves to dress up and put on her make up as if she is about to go out, then bottles it at the last minute. Her meltdowns are really bad and whilst I know the right thing is to walk away until she has calmed down, I sometimes just can't help myself and shout back and get so frustrated with her tunnel vision. The psychiatrist has prescribed Fluroxotene (sp) and it does seem to be calming her down abit. She is definitely more talkative and is now actually talking about doing a hairdressing apprenticeship, whether she does or not I don't know but she is actually talking about it. She doesn't seem capable of looking after herself at the moment or making the journey into Derby or Nottingham, but I am hoping that in a year or so she may have matured a little more. It has been really tough especially the last 12 months and there have been times when I don't feel that I have been able to cope. This board is a saviour in reading that other people are in the samae situation. The last few months I have felt really down and have been a frequent visitor to the doctor, but now am back on track although there are times when I feel so guilty knowing how school must have been hell for her and making her go through the gates and remembering the tears and her begging me that she didn't want to go in. We also get the middle rate DLA and the lower rate travel. Whew - what a lot ofo my chest - I am so sorry if this is long and rambling, but your story is so similar and all the posts that you have put on is liking mirroring the ones that I would like to post. Lisa x

My DD 16 AS dxed gets insomnia at times and she also has a reverse sleep cycle in that she will go to bed during the day and sleep until about 7.pm and then be up all night. CAMHS says that this is quite common for people with AS and she is using this as an avoidance tactic because of her anxiety. During the night there is nobody around and she can happily do what she wants without speaking to anyone and during the day she is sleeping to avoid people. There have been occasions when she won't sleep at all. CAMHS have prescribed melatonin, which seems to have helped, but we tend to know when her anxiety leves are at their peak as she doesn't sleep at all.

My dd (16 now) used to shutdown at school. She hasn't been in school since last September and hasn't taken her gcse's and is very reclusive. She was dxed only last year but when things used to get too much at school she would shutdown completely or freeze and not move. All I got from the school was that they had never seen behaviour like this before and assumed that it was a problem at home. Since she has been at home we have meltdowns. I must admit that sometimes I do lose it as sometimes I get so frustrated by the tunnel vision when she can't see the bigger picture even though I know that she can't help it. She still switches off and goes into what I call a daydream mode but not as much and we get more explosions instead.

My DD has a dx of AS and she gets jokes, loves her hair straighteners, is into fashion and makeup. She is very clean herself but her room is a slum, her clothes are all over the floor, her stuff is all over her dresser (from tissues to spilt makeup). The problem is that not everyone ticks all the boxes and whilst she ticked most of them she didn't tick all of them either and in the end because no-one listened we saw someone privately (affiliated to CAMHS) who after a year DXed her. It may also be that some your OCD traits are masking the AS ones. Sometimes I don't feel they look at the whole picture if the ticklist is not complete.

This all sounds so familiar. I have a 16 year old who was diagnosed with AS last year and is in complete denial trying to live a NT life if being reclusive at home and refusing to go out is that. She has obsessions but has not developed any crushes yet which could be due to the fact that she never leaves the house and is still incredibly immature in some aspects. We do have complete meltdowns, the swearing and abuse is second to none (I am learning new words all the time!) and the aggression (thrown objects across the room) is not very pleasant. She has severe anxiety issues and I think she is depressed but can't get her to the doctor and she refuses to see the psychiatrist at CAMHS, although my husband I and see her by ourselves just for support. She did tell me that help between 16-18 is difficult to get and that once she was 18 she could be seen under the adult services but in the meantime we have just been left. It sounds very much like your daughter is having conflicting issues in that she wants to be NT but isn't, can't do the social aspects of NT behaviour and would need some counselling on what is acceptable behaviour. If anyone is able to tell me whether they have experience on being on medication for depression and whether this is helpful I would really appreciate this. I often dispair of what will happen to DD as she is reclusive and we can't even talk to her about her future (ie education, work). I think if we can get through the depression then some aspects may fall into place in that she will listen. Martyn - hope you don't mind me hijacking your thread a little but it sounds so similar in some ways and I can see my daughter behaving this way if she develops a crush. Lisa xx

It depends on what level you want to work at, whether you are going for GCSE's, A Levels or a degree. When we tried home schooling we used Oxford Home Schooling. My daughter had ideas that she wanted to take at lest 5 GCSEs. Unfortunately, she wasn't motivated enough to learn from home as I also need to work, but the materials are very good and they do up to A levels. They have tutors that you can speak to over the phone and I found them extremely helpful but she didn't last the course! The link is below if you want to have a look. http://www.oxfordhomeschooling.co.uk/

My DD, when at school, frequently lost her kit, her rulers, her pens, etc. She was always accused of doing this on purpose. Unfortunately she had not been DXed at this point and was always put in detention for not having her equipment. Everyday I would ask "Do you have your ....." and always the response was yes, but she always managed to lose something during her day at school. Unfortunately her organisational skills at 16 have still not improved.

I can understand your frustration. My DD is 16 and was only diagnosed last year, which we had to do privately in the end. Since she went to secondary school her behaviour was not like others and all I got was "I have never in all my years as a teacher seen this kind of behaviour". I begged the educational psychologist for an assessment but was told she was an "indulged" child and needed more structure. Naturally as I was remarried it was the family dynamic that was at fault. For 4 years she struggled in various secondary schools, with refusals to go to school and camhs saying she didn't have a problem. SHe wasn't bad at school but refused to cooperate and would often ask to be excused and then hide in the toilets to avoid lessons. She was always insistent on going to school late, after others had gone in and there were days when she was in hysterics at the school gate that she didn't want to go in and I would be losing my rag telling her to pull herself together and get into school. If only I had known and the guilt I feel now for having put her through that. We have had the excuses from stomach aches, feeling sick, etc, all through her high stress levels and high anxiety levels. In the end we begged the doctor for a private referral and after assessments she was finally daignosed with AS and I actually felt quite relieved. Although the dx has brought up other issues. She was referred back to camhs after the dx, which they have accepted and whilst the psychiatirst has been extremely helpful (aiding me in getting our DLA) she doesn't really have much to offer in way of support. Says that DD now falls into the category of not being a child and not quite being an adult and that the options for help between 16-18 are quite limited. DD has been at home since last September and not gone to school and is a virtual recluse at home. She is quite happy at home all day on her computer and plugged into her iPod. THere are times when I am so angry and have felt so let down by the system. I just wish the original school she was at would have taken my concerns more seriously instead of taking the easy route and putting it back to the family dynamic and a spoilt child not wanting to go to school. So I understand your frustration and I have so been there and still am. Lisa xx

I am so sorry. <'> <'> Did the lad give a reason why he didn't want to be friends anymore with your son?

My dd of 16 has been off school since September and previously to that for months on end at other schools. No assistance from welfare officers and no assistance regarding home tuition. We are in limbo at the moment as she is in denial about her dx of AS and thinks her behavriour is perfectly normal and that of the "typical" teenager yet she won't hear of going to college when Connexions came round to discuss her options. The psychiatrist at camhs has dxed her with extreme anxiety. She is also a virtual recluse.

I haven't really found any support groups locally but am quite new to all this as we only got the official dx last year. The NAS is running a seminar on Managing Anger in Young People with AS. I went on the course in Birmingham and made contact with some people there in the same situation but it is difficult for me to get to Birmingham, but they are running the same course in Derby in a couple of months time and I have asked if I could attend that one so that I could possibly meet people in the same situation that live locally.

Hi Louisa My daughter sounds very similar to yours. Whilst she makes friends quite easily and was always popular at school she can't maintain friendships and like your daughter is extremely rigid in her thinking and if something does wrong with a friendship that is the end, she won't try to fix it. She also has a rigid sense of injustice. If she perceives an injustice against her she wants me to phone up the parents and tell them how to punish their children. She is also a good avoider. SHe hasn't been in school since September and will not be taking her GCSE's next month. She can't stick at anything and lacks confidence although she will maintain she is a confident person. We had Connexions round today and they were talking about a programme to get her to college to do her GCSE's and whilst she pretended she was interested and she did listen and ask some questions, as soon as they went she said I'm not doing that. Connexions also have an appointment for her to attend at meeting at their office on Monday for a taster session and she is already making excuses. Like your daughter, ours has no close friends or anyone to go out with or start college with and R is very reclulsive. Home, computer and iPod are her life at the moment. At least I don't feel so alone knowing that this appears to be the norm for the teenage years. Am hoping that as she gets older and through adolescence, which seems to be heightened by AS that perhaps she will be able to cope a little more with things. Lisa